one silly mama

Popping out of the foxhole

2012-01-06T23:31:00.000-05:00

I didn't realize just how long it has been since my last post until just now. Wow. I miss writing here; I am constantly thinking of things I'd like to talk about but never force myself to do it. I hope you all had a happy holiday season and are enjoying the new year.

Tonight on Facebook I saw a link to a story and video clip of US presidential candidate and former senator Rick Santorum, talking about how people should be charged more for health care coverage if they have pre-existing conditions. The link is here.

Blaming people for their health issues is ludicrous - there is often no way to know why they have the issue they have. I'm not even speaking for myself here... it's entirely possible that I have kidney cancer because I am fat - therefore it is my "fault", since obesity is widely considered a risk factor for many cancers. But while I would be charged more for insurance - or even be denied coverage - what about another cancer patient, who has always maintained a normal weight, has always eaten a healthy diet, has exercised regularly, never smoked, and did all the other "right" things? Would they get to pay less than I would, even though we would both be costing the insurance company the same large amount for our treatments?

Let's say the answer is no, they would also pay an increased premium. OK, well then, what bad choices did they make that justifies a higher premium? Nobody can point to anything, so the good-choice cancer patient is going to complain, and rightfully so, that they are being penalized for something that they didn't cause.

Now think about the other answer... if the good-choice cancer patient doesn't have to pay a higher premium, how is this saving the insurer any money? It isn't. Sen. Santorum says it's all about charging more to those who cost the system more. But by adding the whole notion of assuming that high cost medical issues are in large part a result of poor personal choices, what he seems to really be saying is that we should penalize people who do "bad" things to their bodies. Now it's no longer about having those who receive more benefit pay a larger share, but about punishing people. And punishing them for issues that can't be easily proven to be directly caused by their actions and choices.

After I read the story above, I read another article where in explaining why it would be okay people with pre-existing medical conditions to be denied coverage, he compared health insurance to car insurance. He states that it's not fair for people to only buy coverage if they are sick and know they are going to use it. He also thinks that maybe insurance should only cover large-ticket care and we should all pay for our own "maintenance" costs. OK, this would make insurance cheaper. But would it save money in the long run? I don't believe so. If people don't have coverage for well visits, prescription drugs, immunizations, etc. then many of them are not going to pay out of pocket for those things. Then what happens? If they get REALLY sick, they incur huge health costs. We see this daily in the overuse of emergency room care in the US. Maintenance care can catch things early and keep complications from happening. Ask any dentist about this - if you go for your exams and cleanings regularly, problems can be caught early so that you might not need really expensive work later.

Sen. Santorum also stated that

"insurance rates shouldn’t pay for your general maintenance any more than they should pay for the general maintenance of your car. [...] Should they pay for the operation, well just as much as they should pay for the car accident."

Wait a minute... a car accident is something that happens unexpectedly. Do most accidents occur because drivers didn't get regular oil changes, fluid checks, and other maintenance? Of course not. But accidents aren't the only high costs that can be incurred by car owners. Engines and transmissions break, brakes fail, lots of other things happen, none of which car insurance will pay for. So the argument doesn't really hold up to me.

In another video clip, Sen. Santorum makes fun of the idea that everyone should be able to be covered by the same high level of health insurance. Meanwhile on his own web site, he says "Every American should have access to high-quality, affordable health care". I guess it's okay to have access to it, even if I can't afford to actually purchase it, in his world.

I work for an employer who offers excellent health care coverage at a very reasonable premium. I feel extremely fortunate to have this coverage. My insurance plan has spent an enormous amount of money on me over the last almost seven years. However, during that time, I've been able to maintain full time employment, pay my taxes, and generally live my life. The idea of having lesser, or no coverage, scares the bejeezus out of me.

I totally agree with everyone on both sides of the political spectrum that we have an enormous health care problem in the United States. I just don't think that Sen. Santorum's ideas are going to solve anything.

Guest post - Finding the Right Cancer Support Network for You

2011-10-19T21:58:00.002-04:00

Recently I was contacted by someone who happened upon my little blog, and who wanted to share some information that some of my readers might find helpful. David Haas is a guest contributor to the Mesothelioma Cancer Alliance blog and maintains his own blog. I feel honored that David asked me to post his article. Here it is:

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Finding the Right Cancer Support Network For You

Cancer is not only a threat to one’s body; it’s also a threat to one’s emotional integrity. Family and loved ones can be sympathetic and supportive, but how can they really know what you’re going through? Peer support can be a vital resource for cancer patients. A new form of cancer patient peer support group has emerged in recent years, facilitated by the Internet, that help cancer patient’s support one another. These are online cancer support networks.

Cancer support networks can be formal groups affiliated with hospital and cancer centers, administered by medical cancer specialists; they can be informal networks, put together and managed by survivors; or they can be anything in between.

While some of these groups are geared toward emotional support alone, others are oriented more practically and offer support for both the practical and financial aspects of cancer survival that can sometimes be overwhelming, things like how to find assistance with transportation, food preparation, laundry, cleaning and even childcare if you’re in a situation where you don’t have a support system to help you with those things. Cancer support groups can also point you towards financial resources in case your insurance is inadequate to meet your medical and transportation needs. Cancer support groups can help you find 24 hour cancer support lines and medical information; they can even help you formulate questions to ask your health care providers that will yield the most useful replies.

The results of several research studies suggest that finding the right cancer support group can help patients cope better with all aspects of their disease which can actually help them live longer. Online support groups may be particularly useful for people who live in rural areas or who are immobilized because of their disease. There are even cancer support groups for patients with rare cancers like mesothelioma that can help these patients feel less alone.

How do you find an online cancer support group that’s right for you? Begin with talking to your doctor, your nurses or your hospital social worker. The American Cancer Society (ACS) maintains a registry of literally thousands of cancer support groups nationwide as well as of other cancer advocacy organizations that maintain online support groups. The National Cancer Institute maintains a similar database. Affiliated with the ACS, the Cancer Survivors Network is a sophisticated Internet forum with bulletin boards and live chats. There’s a cancer support network that meets your needs waiting for you to find it.

By: David Haas

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To add a little to what David has said, another place where I have found support, as have many other cancer patients and families, is through the Association of Online Cancer Resources. ACOR adminsters over 150 mailing lists in support of people affected many different cancers. As I have said here before, being on the ACOR list has been wonderful for me; without them I would not have known about HDIL-2, much less had the treatment. And while it was not ultimately successful, the positive effects of it are likely still taking place in my body. The people I have met on the list are wonderful; willing to share information and truly caring about other listmembers.

The Ballad of Tom and Jerry

2011-10-11T22:46:00.000-04:00

Once upon a time there were some little frogs. African Dwarf frogs they were, though they found themselves, along with a couple dozen other frogs, in a third grade classroom in the United States. They heard that they were part of some sort of science experiment, and that frightened them. Fortunately, they weren't forced to wear any makeup, eat 12 times their body weight in aspartame daily, or have tumors grafted onto their wee bodies. Instead, they were only present in the classroom for "observation". This observation consisted of the little frogs being placed into small tanks in groups of 2 or 3, and some children looking at them every day, along with feeding them and keeping their tank clean. All in all, it wasn't too bad a gig.

After a few weeks though, the gig was over. What would become of these dwarf frogs? The teacher in the classroom placed them for adoption with some of the students, ones whose parents had signed a form agreeing to take care of them, students who had to explain in writing how they would care for these miniature amphibians. And so it was that two of these frogs found themselves joining the family of a girl named Rebecca. Rebecca, you see, loved frogs, had loved them ever since she was a toddler. When the teacher said that the frogs could be adopted out, Rebecca pleaded with her parents to let her have one. They agreed, though they would need to purchase a home for the new family member, as well as food. When the adoption day came, not one but two tiny frogs went home with Rebecca. African Dwarf Frogs are social frogs, and prefer sharing their home. Having a buddy in the tank would make their latest transition much easier. As soon as they arrived at Rebecca's house, she and her dad set them up in their new tank. Soon everyone in the family was captivated.

Naming of the pair was a hotly debated subject among Rebecca's family. Many names were suggested, and just as many were rejected by the adoptive mom. After watching the frogs chase each other around their watery home, Rebecca settled on Tom and Jerry. One frog was noticeably larger than the other, so it was easy for the family to distinguish between them.

They lived on Rebecca's family's kitchen table and life was good. They swam, they rested, they observed Rebecca and her family while the family observed them. But then Black Monday struck. That evening, Rebecca's sister noticed Tom floating on his back, not at the surface, but closer to the bottom of the tank. Distraught, Rebecca lovingly fished his lifeless body out of the tank. She wanted to bury him in the yard, but her parents insisted on a burial at sea instead. So Rebecca took Tom's body into the bathroom, locked herself in, and held a private service for him. Rebecca was very sad about Tom. She asked why did he have to die? Her parents couldn't give her an answer, so they just comforted her as well as they could.

The next day, when Rebecca came home from school, she found Jerry lying at the bottom of the tank. In a panic, she called her mother and left her two increasingly sorrowful messages, before reaching her mother on the phone. Jerry had joined Tom over the Rainbow Bridge. Rebecca was heartbroken. Her parents told her that once she felt better, they could get more frogs, or maybe some fish, which improved her mood.

Goodbye, Tom and Jerry. We're sorry to lose you; you fascinated and entertained us. Thank you for letting us share our home with you, however briefly. Your time here was so short that we never had the chance to even take your pictures.

Still kickin'

2011-10-04T22:04:00.001-04:00

Finally done with leg ulcer healing time, which means it's back to Sutent time. Last Thursday I was officially discharged from wound care and took my first capsule of cycle 9. Since I had been off treatment since late July, Dr. Rini wanted me to be scanned again so that the next scans would be compared to now, rather than where I was two months ago. The rationale is that in the last two months we expected progression of the cancer. I was a bit nervous about what they would find, though I am no longer nervous at all about the scans themselves. It's interesting to learn that what I once thought I couldn't tolerate, is now just a minor event in my life. I had my first MRI scan in 2005 when they still didn't know what lurked in my kidney. It was brief, only 10-20 minutes or so, because of my pregnancy at the time. But to me, it was an eternity and I felt very trapped in the tube. Once it was decided in 2009 that I should have MRI scans of my abdomen and pelvis rather than CT scans, I had mixed feelings. I still felt anxious about being confined to that narrow, loud tube, anxious enough that Dr. Rini gave me a prescription for Xanax to take prior to scan appointments. On the flip side, no more CTs below the chest means I no longer have to drink the oh so flavorful and delightfully slimy Redicat contrast drink. I am now able to go into the MRI without drug help and for the first time last week, was relaxed almost to the point of sleep while in the tube. I can't in fact sleep in there because I have to hold my breath during several images. Now, the only rough patch in the scan procedure is getting the IV inserted; my veins are too shy for the average nurse or tech to find easily.

Back to last week's scans. The results were as follows:

CT of chest - detail of lungs

RESPIRATORY SYSTEM: Multiple bilateral pulmonary nodules, many of which have decreased in size. For example, 2-mm nodule in the entry site of the right upper lobe (SP 145) previously measured 4 mm. Additional interval decrease of 8-mm poorly marginated right lower lobe nodular opacity (SP 50), previously measuring 10 mm. No new pulmonary nodule, parenchymal consolidation or foci of cavitation.

In plain text - I have multiple little dots in my lungs. Many have shrunk, including one going from 4mm to 2mm and one from 10mm to 8mm. No new dots seen. Bottom line:

IMPRESSION:

1. IMPROVING BILATERAL PULMONARY NODULES, REPRESENTING FAVORABLE RESPONSE TO THERAPY.2. NO INTRATHORACIC ADENOPATHY SINCE 25 JULY 11.

OK, that is great news, and surprising given my time off treatment.

My abdominal and pelvic MRIs are read and reported together. Here are the Cliff's notes:

Abdomen:

Previously identified ring enhancing lesion in hepatic segment VIII (series 21, image 36) is stable in size measuring 1.2 x 0.9 cm, but demonstrates increased central enhancement. Additionally, there is a new hyperenhancing lesion in hepatic segment VI, which measures 1.1 x 1.1 cm (series 21, image 70).

This is a good news/bad news scenario. Bad news - there is a new spot in my liver, joining the one that remains. In truth, this could be a lot worse, considering that I had four of these spots prior to starting Sutent. Good news - I'm told that the "increased central enhancement" of that tumor can mean that it is dying off.

The spleen, right kidney and right adrenal gland are unremarkable. There is no hydroureteronephrosis. A small splenule just distal to the pancreatic tail is unchanged.Previously described L2 vertebral body hemangioma is unchanged. No new osseous lesions are identified.

This is the spinal thing that they saw earlier this year. I am having a lumbar MRI and seeing the neurosurgeon next week for a 3 month follow up to hopefully confirm that it is just a hemangioma.

Pelvis:The previously identified pelvic omental nodule is stable in size, measuring 1.7 x 1.4 cm (series 8, image 46). There is no new pelvic mass oradenopathy.

So, the one spot in the pelvis is still there, still stable, and most importantly, has no tumor friends that have joined it.

Wow. This was better news than I could have hoped for. Well, in truth, I could hope that everything just disappeared since July, but I know better than to hang my hat on that hope. Clearly though, Sutent was still kicking some cancer ass even while I spent my summer letting my leg heal, and getting very sluggish as a result. I need exercise!

So that is the latest medical update. Like I said in the title, I'm still kickin'...

Where do I begin?

2011-08-25T22:34:00.000-04:00

No idea... I can't keep up with myself, much less spend time documenting it or analyzing it. I think I'll just write about whatever pops into my head first and see how that goes.

Summer is officially over at our house. The first day of school for Rebecca was yesterday. It was a glorious day for her, as she was already happy with her teacher assignment, a happiness that was multiplied exponentially after spending a day in her new classroom. She's excited about the school year... 3rd grade. I remember that grade pretty well, and it's funny to see my little girl in that same place.

Carly has decided that for school, she wants to be known as Caroline. Just like her sister, she has chosen to use her full name at school. Yesterday she, Jim and I attended a one-hour orientation for Kindergarten where we got to meet her teacher, see her classroom, and even ride around the block on a school bus. Her teacher is new to the school, though not really... she was a long-term substitute last year for a teacher on maternity leave, so she's familiar with the school and the other teachers. She's young and enthusiastic and I can see Caroline having a great year with her. Today C went for her first full day of school, and seemed to really enjoy it. Having that short visit yesterday really put her mind at ease about going to this new school full of new kids. Nobody from her preschool is attending our school, so she would know nobody except that one of our neighbors is in her class. Kind of nice for both of them, to have someone in the room that they are already familiar with. Though knowing our Carly, I anticipate she'll be making herself social pretty quickly.

The fly in our ointment right now is the school bus. Because we live less than a mile from our school, Rebecca does not have a seat on the bus. The district provides busing to all students in grades K-2 but for grades 3-8 it's only guaranteed for kids who live more than a mile from their school. We were officially notified that Rebecca did not have an assigned bus about a week before school started. The district allows us to request a spot on the bus if there is space, but those assignments won't be made until mid-September. So for now, Rebecca will be either getting a ride with one of us, or a neighbor in the same situation, or will walk. If I were home during the day, I would walk the girls to school and back, as a way to get some exercise. However, Jim is the one home during the day, and I'm not sure he wants to start that much walking right now! I did find him some fabulous walking shoes from New Balance (go to http://www.joesnewbalanceoutlet.com/ for great prices!) so lately he's been wearing those instead of the work oxfords he got so used to years ago. So maybe he'll be inspired to walk one of these days.

My health is okay these days, despite some bumps in the road. I completed my 8th cycle of Sutent in July and had scans which showed everything stable. Dr. Rini was happy about the results, well, as happy as Dr. Rini gets about things, since he maintains a definitely cautious attitude in general, as I think many oncologists do. I mentioned in a previous post that prior scans showed 'something' on my L3 vertebra, so I got to meet another Cleveland Clinic doctor and have an MRI of the lumbar spine in late June. The MRI showed that the lesion is likely a hemangioma, so nothing to be concerned about. My neurosurgeon (how weird to say that!), Dr. Angelov, wants me to have another lumber MRI in September to compare, but she feels pretty confident that we won't see anything bad. That was definitely great news.

Other parts of my body are still causing trouble, however. Despite being surgically post-menopausal, I've continued to have occasional spotting. At first it was thought that a polyp was the cause, so we hoped the D&C I had in February would take care of it. Of course that didn't happen, so I went in for a 3-D ultrasound and an endometrial biopsy. My endometrial lining is thicker than it should be, though not 'scary thick' in my doctor's words, so most likely I am having bleeding due to 'peripheral estrogen' in my body (aka that stored in my plenteous fat tissue!) causing my body to think it needs to cycle. Much discussion among several doctors took place to decide how to deal with this. There were 3 options put on the table:

Have me take progesterone orally for 12 days each month to trick my body into cycling without bleeding so to speak. Pro: non-invasive, easy to do Con: might not work for me
Have an endometrial ablation - in laymen's terms, burn out the endometrium so there is nothing there to build up and slough off. My gyn was concerned that my 2 C-sections would preclude this option from being feasible. Another gyn she consulted with thought it would be a bad idea because later there would be nothing to biopsy if I had no lining any more. The surgeon who did my ovary removal last year thought it would be a good idea, and Dr. Rini had no problems with it, other than planning it for the middle of a Sutent break so that I could heal before going back on cycle.
Complete the hysterectomy by removing the uterus and cervix. Pro: This would sure take care of the issue! I would also no longer have to worry about either metastases to the uterus or cervix, or developing uterine or cervical cancer. (Yes, Virginia, you can have multiple primary cancers. Fate does not care that it would be unfair.) And I would never have to have a Pap smear again! Con: Surgery. Major surgery. Sure, they can do this less invasively than in the past, but my gyn in particular was concerned about putting my body under more trauma right now. It would also mean a longer break from Sutent, and I would have even more internal scarring from surgery than I already have.

I decided to go for door number 1 for now. There is no harm in trying the progesterone first; if it works, then I can just carry on as usual until my 'peripheral estrogen' passes out of me, whenever that might be. And if #1 isn't the right door, I think I will go for an ablation. Part of me would love to get rid of the rest of these troublesome organs, but the rest of me really does not want to have a surgical procedure that could possibly be avoided. I start progesterone at the beginning of September and am hoping for the best.

As if this wasn't enough, the wound in my leg that started as a likely ingrown hair in April, turned into a full-blown ulcer. In my quest to meet even more Clinic physicians, in June I added to my list a doctor in the Clinic's lower extremity wound clinic. At first he decided that I should remain on Sutent, but the ulcer just grew. Dr. Rini told me when I saw him in July that I definitely would need to take a break from Sutent for this thing to heal, as Sutent will stop wound healing. As of now I am two weeks beyond my usual break, and the hole in my leg is finally shrinking. I had two weeks of Bactrim, 1 week of Cipro, tried 3 different anti-microbial things to put on it, I have to keep it bandaged with gauze and tape, AND, I get to wear an elastic 'sleeve' on my leg that starts at the knee and goes to my toes. (Trade name: Tubigrip) The Tubigrip is to keep my leg from swelling; it's surprisingly NOT hot to wear, which is a relief. I was also told to keep my leg elevated when possible. It's been a drag not being able to get active over the summer, and I've gained some weight because of being even more sedentary than usual, but I didn't have much choice. I was seeing the wound clinic folks weekly until last week, when we saw definite improvement. I got an appointment reprieve for this week and I hope that by next week it's really much smaller. I want to get back on Sutent, despite the lovely side effects. And I want to do water exercise at our local rec center, which I am forbidden to do until the wound is closed.

So that's the medical report of what I did during summer vacation. Next installments will be about more fun things, hopefully!

Relay for Life

2011-07-28T12:43:00.002-04:00

Before last year, I had never attended a Relay for Life event. Every spring a Relay event is held at the high school my oldest nephew, Will, and my niece/Will's sister Allison, attend. Last year Allison was performing at the event with her show choir, so the girls and I went to hear her and to support both of their Relay teams. We ended up spending several hours there, playing games and in Rebecca's and my cases, getting totally sunburned. Will told me that they honored survivors at the event each year, so I could attend next year's event more formally. I was so impressed and touched by everything these high school kids had done to raise money, and so I agreed that I would attend the 2011 event as an official survivor.

Will was a member of a Relay team again this year, so Jim and I donated to his team and I signed up as a survivor. On the morning of Relay, we arrived at the high school track in plenty of time for the opening ceremonies. A few people gave some touching speeches about their experiences with cancer, words that moved both me and Jim.

As a survivor I received a special purple t-shirt advertising Relay on the front with the words "Celebrate Remember Fight Back". On the back of the shirt it says "I'm living proof".

After the opening ceremonies concluded, I joined a number of other purple t-shirted people on the track to walk a "Survivor Lap". The experience of that one quarter-mile lap was more emotional than I had anticipated. As we walked the track, people, mostly the students on Relay teams, stood along the inner edge of the track, where they applauded and cheered us as we passed. On the back side of the track I saw Allison, who had cut across the football field to see me. She was crying, which really touched me, so I jogged over to give her a hug as the purple wave rolled past. After the lap, survivors and caregivers were invited into the high school cafeteria for a luncheon provided by Outback Steakhouse. I located Jim and the girls in the crowd, and my sister-in-law Melissa agreed to entertain the girls while we had lunch. At the cafeteria we found seats at a table with one other couple. We enjoyed chicken caesar salads and cheesecake slices, along with very pleasant conversation with our table mates. All survivors received a small backpack filled with several gift items; it was a nice surprise. After lunch we met up with the girls and hung around for a while. While there we got to enjoy the cooking of Will's team, the Man Burger Squad, and some roasted sweet corn. Yum...

Along the outside edge of the track they began to place luminaries which were "purchased" in honor or memory of a cancer patient. Allison had told me that she decorated a luminary for me, so I was eager to find it along the oval. As we began to walk around the track, I saw a luminary with my name on it, but no decoration, so I knew it wasn't the one Allison had mentioned. My nephew Marty was at Relay with his Boy Scout troop, and he told me later that he had donated money to buy a luminary for me. What a kid... I gave him a hug to thank him for such a sweet gesture. It was both sobering and heartening to see all of the luminaries there. There were a few names that appeared on multiple luminaries; I wondered who those people were who had so many people donating in their names.

On the back side of the track we found my Allison-donated luminary. She included on it a quote that I had found on Facebook and added to my profile:

I had purchased luminaries in memory of my dad and my friend Deb, but I hadn't seen either of them as we came around the homestretch of the track. Will explained that they were still putting out luminaries and that by the end of the day, they would have luminaries lining both the inner and outer edges of the track. I gave up on the idea of finding my two donation luminaries, but then there they were, next to each other.

There was an official lighting ceremony scheduled to take place at dusk, and I hoped to return to see it. Unfortunately, my Sutent-induced foot pain had been aggravated by my afternoon of walking, so I stayed home with my feet elevated instead. Hopefully next year I can see the beautiful light of all of those luminaries.

Some of the fun the girls had:


The girls meet up with the Energizer Bunny


The battle of cousins - Marty and Rebecca

Caroline airborne

First Holy Communion

2011-06-19T21:32:00.000-04:00

Official portrait - love the tongue!

On May 7, Rebecca received the sacrament of First Holy Communion. She prepared for this event over the last several months, attending weekly religion classes (known as PSR classes). She also dreamily anticipated wearing a lovely white dress and having a party to celebrate with our family and friends. She was selected by her teacher to read a bible passage at the Mass, and did a tremendous joy. During the weeks leading up to the ceremony, I asked her if he wanted to practice her reading with Jim and me. She declined, saying that she had practiced at PSR class and that she liked to read at loud at school, so she wasn't feeling nervous about it. I thought that she would experience some nerves that day but she didn't - she told me that she was only afraid that she might start to laugh as she walked in the entrance procession, just because she was so excited. What a great attitude she showed - I was really impressed by her composure.

In front of church before the Mass; afterward with the celebrant, Fr. Eric

The dress that she wore that day was indeed beautiful, simple yet princess-like. We had gone dress shopping back in February, finding one at a local department store. It was an A-line dress in a heavy satin, with some embroidery and a shrug jacket. The style of the dress didn't match my mental image for Rebecca's First Communion, but when she tried the dress on, she beamed, so I agreed to buy it. Unfortunately Rebecca grew between February and May. She tried on the dress the week before the ceremony and while it was possible to zip it up, it was clearly not comfortable for her to wear. I felt a mild panic as I considered our options: See if the store has the same dress in a larger size? See if the dress could be altered quickly? I called the department store to ask about the dress but nobody answered the department phone. It was during the dinner hour, which I figured would mean fewer shoppers at the mall, so I gathered up the dress, Rebecca and our sidekick Carly, and headed for the store. In the girls' dress department we received some bad news. Rebecca's dress was sold out of all sizes except one much smaller. But the good news was two-fold. There were still several styles available, and because many churches' First Communions had already taken place, all dresses were 30% off. Rebecca picked out two dresses to try on and we both were thrilled by her first pick. It was a sleeveless white dress with a beaded waistline and a puffy skirt. This dress was in the style that I had originally though would be most flattering on Rebecca, and I was right. She tried on the other dress that she had selected, just to see it, but there was no contest - we had found THE dress. Back on the sales floor we selected a shrug sweater, then found a sales associate. He processed the return of the original dress and the purchase of the new items, which thanks to the sale, totaled about $30 less than the first outfit.

As the kids gathered before the ceremony that Saturday, Rebecca and I noticed two girls wearing the original style she had picked out, so she was even happier that she'd found another dress. My initial panic was replaced by a feeling of satisfaction, that the right thing had happened after all.

The Mass itself was very nice and all of the kids were very cute receiving their First Communion. The parents were asked to come up to the altar with their child, and because Rebecca was a reader, our family sat in the front row of pews. This meant that Rebecca was the first in her class to receive the sacrament; we were able to then just observe as every one else took their turn.

No idea what was going on here, but glad that my brother-in-law Shaun captured it

The Mass took place at 1:30pm and we had planned an open house at our home afterward. Unfortunately, just before Easter I developed a small infection on my leg, which required antibiotics, and which caused me to delay the start of the next cycle of Sutent for about 10 days. I was instructed to keep my leg elevated as much as possible to help it heal. Jim's mom was concerned about me spending a lot of time on my feel preparing for the party, so she graciously offered her house as the venue. We agreed, and it turned out to be a really fun party. We were able to visit with family and friends, the kids had a chance to play, and everyone enjoyed a lot of good food. I am forever grateful to Jim's parents for the gift of their home for the party.

Delicious cake made by a local baker - our friend Deanna.

The only sad note was that I realized after the day was over that we had never gotten a photo of Rebecca with Jim and me. I'm not sure how that happened, and it certainly didn't ruin the day, but I wish we'd gotten some sort of family snapshot. Oh well.

I think I enjoyed the whole experience of Rebecca's First Communion as much as she did. Her experience was far different from my First Communion in 1973. At that time, my parish did not do First Communions by class groups, instead each child's ceremony was an individual one, held during a regular Mass. For some reason , Palm Sunday was chosen ans the day for my First Communion. Unlike Rebecca, I was very nervous, and it was difficult to sit through the reading of the Passion, waiting for my time to be stared at by the congregation. Despite my fears I survived the Mass with no problems. I wore a dress of white dotted swiss that my mom sewed for me; she was a good seamstress and money was tight, so we didn't shop for a fancy dress. Instead of a veil, I wore a hair comb with a white ribbon attached, which didn't bother me. However, I was very much bothered by the fact that my mom would not buy me white shoes for the occasion. Instead I was forced to wear my black patent leather shoes with my white dress and tights. My mom told me that white shoes were too expensive to buy for just one day. I didn't agree with her at the time, though now I understand how frivolous a purchase they would have been. During my childhood there was no Payless or Target where we could get inexpensive shoes. I am grateful to have those options now so that the girls can have a little "bling" sometimes without breaking the bank.

I didn't have a large family, so my First Communion celebration consisted of my nuclear family, along with my paternal grandmother and uncle coming to our house for Sunday dinner. The large family is something I am happy to have acquired by marriage - I enjoy the happy chaos at our celebrations and I love that my girls have aunts, uncles and cousins whom they see regularly.

I like this shot even better than the official one, dandelion and all!

Playing catch up

2011-06-09T21:54:00.000-04:00

I have wanted to post updates here since my last post, but just haven't "felt" like writing. I feel like my attention span is nil these days, despite ADD medication. I think being on Facebook doesn't help; I can update our status pretty much any time. On the flip side, it's not a medium conducive to introspective expression of the lengthy variety.

But I'm going to try to add some events and thoughts from the past few weeks, hopefully over the next few days.

Surgiversary number 6

2011-05-10T22:54:00.001-04:00

Six years ago today I was relieved of one kidney, one adrenal gland, and one big tumor. Six years... it's really receding into the past. The scars from that procedure are barely visible on my skin anymore. I have newer scars to look at instead, but those marks are preferable to not being able to see anything anymore.

The last couple of months have been very low-energy for me. My last two cycles of Sutent have caused more fatigue, and brought along with them foot soreness. I have a couple of spots on each foot that get very sore about midway through the cycle, and which return to normal during the first week off cycle. The foot pain is not unbearable, but has definitely slowed me down a lot; to the degree that I have gained some weight due to the decrease in activity. It also prompted me to ask my oncology NP, Shari, for something I didn't ever think I would need... namely to help me to apply for a handicap placard for my car. So far in this journey I've been grateful to not feel like a cancer patient, to go about my life with only the disruptions caused by surgeries and scans. However, the combination of fatigue and really painful feet really made me feel differently, emotionally. For once I didn't feel like "mind over matter" could make me forget what is going on inside my body. Instead, when the symptoms are at their worst, I just feel... well, kind of run over, and more pessimistic. Don't worry, I am not giving up on myself by a long shot. But, even at the level of fatigue I felt, a level that is far less severe than that experienced by people I know, I felt like I could understand why people let go of the fight at some point in their cancer battle. If they feel like it's never going to get any better, they just want to stop suffering. My dad came to that realization a few months before he died. He had been participating in a clinical trial, not because anyone thought it would cure his lung cancer, but just to try something, to have hope. When the results weren't stellar and he felt like crap, he decided that was it. I remember supporting his decision vocally while inside wishing he could find it in himself to keep fighting. But he knew that it wasn't going to help and wanted to enjoy the time he had left as well as he could. He was admitted to the hospital for pain med adjustment, and went home with hospice care for his last two months. During that time he was relatively comfortable, and was lucid (and fun!) up until his last week.

I feel lucky that there are more options for me, should Sutent stop working. Fortunately, we're not at that point yet, though my cancer continues to throw curve balls. I had scans a couple of weeks ago, which showed some good and some not as good news. On the chest CT report it was noted that the one nodule that they thought was necrotizing (dying) in February has in fact decreased in size. On the other hand, a few tiny (2mm) nodules were noted for the first time. Shari explained that these tiny dots may have been there already but weren't seen in previous scans because the cuts on the CT are 3mm so they could have been sitting in between cuts previously. At any rate, 2mm is nothing to get excited about at this point.

The MRI of the abdomen and pelvis. Among the pieces of good news: "No definite enhancing liver lesion identified." There were at least four lesions in there before Sutent. So very good! As for the mass in the pelvis, that Dr. Drake couldn't get to last year without really opening me up, "Soft tissue mass located superior to the uterus does not enhance centrally and is further decreased in size measuring 2.0 x 1.8 cm previously 2.1 x 2.1 cm. There is decreased central enhancement." Oh and I still have gall stones. No news flash there.

But then there was this: "Marginal increase in size of minimally enhancing 1.8 x 1.4 cm lesion L3
vertebral body". In non medi-speak, that means there is a lesion on my L3 vertebra - lumbar, or lower back area of the spine. Here's what's weird about this... a L3 lesion was never mentioned before. Last August there was mention of something on L2, but that was never mentioned again. I jokingly called it the 'floating lesion' but only I found that amusing. Shari and Dr. Rini asked another doctor, a neurosurgeon who works with oncology, look at my scans to see if she thought it would be a good idea to treat this L3 thing with sterotactic radiosurgery. Picture a really strong beam going right into the tumor to blast it away, and you have the idea. The surgeon, Dr. Angelov, wants to wait and see what happens over the next couple of months, so I am scheduled for a lumbar MRI and a visit with her at the end of June.

Right now I should be almost through my first week of Sutent cycle #7 but another monkey wrench has been tossed my way. Shortly before Easter, I developed a small red bump on my shin which turned into a large, angry looking red bump. I had it looked at and was put on antibiotics, which shrunk it a lot. Unfortunately, the damn thing still is a little bit open and so hasn't healed completely. I can't take Sutent with an open wound because the Sutent will keep it from healing, so I am deferring my return to the 'good stuff' by at least a week. I've been checking in with Shari every few days, hoping that soon I can tell her it's no longer a weepy little sore. Hopefully I won't have to go back to the wound clinic, where I was treated so well and so kindly in 2009, but where I hoped never to need to return. This delay makes me nervous but I am trying not to think about it.

Next up - the rest of my life aka non-cancer stuff.

The old switcheroo

2011-03-31T21:12:00.000-04:00

I know I'm due for a health update here, and will get to that, but for now just wanted to post about a funny experience today.

Rebecca is on spring break this week. I don't have enough PTO time built back up to comfortably take a whole week off, but I did take off today (Thu) and tomorrow so that we could all spend some time together.

R was going to have a sleepover this week at her friend E's house. E's sister is buddies with Carly (who is starting to use her given Caroline these days!) and there was talk that both of my girls would go to their house for the sleepover. Then E got sick and her mom decided that while she's much better than a couple of days ago, an overnight wouldn't be a good idea. We decided to take all 4 girls to see Mars Needs Moms today instead. My girls and I stopped off to buy snacks to smuggle into the theater, as those prices just kill me. We met our friends in the parking lot, got our tickets and went to the designated theater in our 16-plex. The previews started with the new Fast and Furious movie, which I found an odd choice for a kid movie preview. Next was the new version of Arthur starring Russell Brand. Better, but still a bit off. I don't recall what else was shown but then they played a preview of a movie called Hanna. This movie is in no way appropriate for kids, especially my 5yr old or her 6 yr old friend. Finally it looked like the movie was starting. Next thing I know, there is a scene of an apartment filled with moving boxes and Bradley Cooper standing on the edge of the roof. Wait a minute... is this a preview for Limitless, which is showing in the next plex-box? While we were trying to understand what was up, a few dozen people streamed in. We were told that the prints were switched, and Mars Needs Moms was playing in the theater marked for Limitless. Super... we gathered ourselves and along with the others in our theater, traipsed next door. MNM had already started! It was still early in the film but we definitely missed a bit of it. Turned out not to be crucial to the plot but the final scene probably would have been a bit better set up had we seen the full beginning. The kids were flexible per usual and just enjoyed. At no time did a theater employee come into either of the theaters we were in.

After the movie, the other mom and I decided to approach an employee about it. He apologized, saying that the prints were not moved as they should have been from the day before. It sounded like his apology, which was only expressed after we solicited it, was going to be the end of the story. But then he looked at all the girls and asked, "did you see all of the trailers?" "YES, we did," we said, in a frustrated tone. He told us to wait while he got us some passes, so we walked out with a free movie coming to each of us.

The girls want to go back tomorrow to see Hop on its opening day but I'm not sure I want to brave any crowds. Our girls did learn however, that sometimes it pays to politely complain about bad customer service.

Is it spring yet?

2011-03-03T22:51:00.000-05:00

March already... wow. Time to start fresh and see what can be done with this month. Hopefully we won't see the snow or rain in the amounts we have so far this winter. It's been a real mess here.

I'm starting the month recovering from my latest medical adventure. On Monday Jim and I braved torrential flooding rains to get to the Clinic by 5:30 AM for my gyn procedure. We almost didn't get there in time; it seems someone (your intrepid blogger) set the alarm for 4PM instead of 4AM. Luckily Jim happened to wake up around 4:40 so we were able to fly through what we needed to do. It wouldn't have mattered if we were a bit late anyhow, as Dr. Attaran, my gyn, was having trouble getting to work, due to various flood-related road closures. The procedure itself went like clockwork and I found myself waking up in the OR by 9:30. My doctor was still there, and told me that it went well, mentioning that she removed something other than the polyp that was originally found. When I met up with Jim in recovery, he explained. She told him that there were some 'fibers' in my uterus that she also scraped away and sent for pathology. At first I just shrugged about this, but then thought, now what? What bizarre thing are they going to discover in the lab? Despite that worry, I felt really good, with just minimal cramping and no other pain. I was able to leave the hospital at lunchtime, so was home well ahead of Rebecca's arrival on the school bus. I've had no pain since, and returned to work today (Thursday).

Dr. A told Jim that pathology would take about a week to get results. Instead they only took a day! My onc nurse, Shari, called and left a message saying that the pathology came back benign, so we're back to our usual treatment and schedule with Sutent. I was able to access the pathology report on my electronic medical chart and saw the official results: "benign endometrial polyp" and "disordered proliferative endometrium". Wow, even my uterus is cluttered; no big surprise! I'll see Dr. A at the end of the month for a follow up, and will see Shari in a couple of weeks for my usual end-of-Sutent-cycle visit. Now that I've gotten this out of the way, my next idea is to visit the Clinic's Genomic Institute to see if we can learn anything about my cancer, if there is any hereditary component, etc. I'm concerned for my girls, my sister and my nephew, who are the only close blood relatives I have left. I'm thinking that since my dad, his oldest brother and their father all had some kind of cancer, that maybe there will be *something* that can be learned. It should be interesting at any rate.

And the rest of life moves on.... Rebecca will make her First Reconciliation this Saturday... her First Communion is in only two months. We got her dress a couple of weeks ago. I'd started doing some looking online and we saw one we both liked at a local department store. They had one in her size so we went there to try it on. Once on Rebecca, it wasn't as pretty as we'd anticipated, so we looked at the racks. She picked out a different style of dress, one that I would not have thought would flatter her, but once she tried it on, she was in love with it. I couldn't resist, so we got it. Now we just have to decide what to do with her hair. We're not sure if we will get a veil, or maybe just a headpiece of some kind. She recently got her hair cut into a short bob, so something simple will look best. I'm excited to see her on her big day; it's just one of those events that I've been looking forward to since she was a baby.

Carly is moving toward a big event as well. Yesterday I officially registered her for Kindergarten at our school district. As of next school year, our district is offering full day Kindergarten. YAYAYAYAY! As you may recall, we were faced with the K dilemma for Rebecca, since only half-day K was offered in our district, yet we needed care for her all day. We ended up enrolling her in a private K, and keeping her there all day rather than having her go to the public K and then back to the private school for the rest of the day. Many other parents do this, but we didn't want to worry about Rebecca being on the bus, shuffling back and forth, etc. Plus, she was able to participate in all of the private K's enrichment activities. However, now that we can send Carly to K for the full day for free vs. about $175/week, there's no decision to make... Carly will be attending the same school as Rebecca next year. The only person upset about this is Rebecca. She finds it incredibly unfair that her sister will get to ride the bus a whole year earlier than she was able to. I explained that I wasn't going to spend thousands of dollars on tuition just for school bus parity; she understood my point of view but is still angry about it. Carly is thrilled, of course. Every morning she comes out for the bus with her sister and the neighbors. Next year she will actually get to ride on it with them. This week I had to bring all the official forms and documents to the Board of Education office to get her registered. She couldn't understand why she wasn't supposed to accompany me to this appointment, even after I explained that I was just going to be doing paperwork with them. So, since the appointment, for which I signed up back in January, was at 7:45AM, I told Carly she could come with me, then I would take her to school. It worked out well; they had coloring papers and crayons for kids to use while parents dealt with the mundane details of registration. Carly now has an appointment for an afternoon next month to have an assessment done, so that they will know what she knows before the school year starts. I showed Carly the appointment paper, and explained what we'll be going there for. She responded, "I need to talk to Miss Tiffany (her preschool teacher) and have her teach me more stuff before then!" Miss Tiffany found that very amusing too, and told Carly that she definitely knows plenty for Kindergarten.

And that's the story from our piece of the world, for today.

Brief check-in

2011-02-22T23:28:00.000-05:00

Life has been space-y lately. By that I mean that *I* am feeling space-y. I get through my days fine, for the most part, but notice that my brain is a bit "off". I forget little things, or don't think through them thoroughly or something. For example, in December I ordered tickets to a concert for the girls and me, and tickets to a different concert for Jim and me, as holiday gifts. I was excited because both shows were on Saturday nights - the perfect night for going out. As the date of the first show approached, I happened to see an ad for it that gave the concert date as the next day. Well that can't be, I thought, because I know I wouldn't have bought tickets to a show on a Sunday night. I got the tickets out to confirm and yes, the show was on Sunday night... I had the date of the day before in my head. Fortunately the show time was 6:30pm so it wasn't a late evening.

Then Jim was on the phone with his mom and she was asking about taking the girls to a play. I looked at the calendar and realized it was the same day as our show tickets (for Jim and me). I told Jim to ask his mom if the girls could just stay over after the play. Exciting... a real date night with Jim, on a Saturday night! Something told me to look at these tickets and much to my surprise, they too were for Sunday night, the day after I thought they were for. It finally hit me that when I bought the tickets, I must have been looking at a 2010 calendar. Wow. This is not the way I used to operate! I was always on top of our schedule and knew when everything was happening.

I've noticed other instances like this, but nothing that is major or that affects our life adversely. In other ways, my brain seems to be working pretty well. At work, I have flashes of inspiration about how to retrieve or manipulate data, that I haven't had before; that is pretty gratifying. And my skill at some of the games I play on Facebook and on my handheld game system have improved. Maybe these skills have pushed my organizational skills right out of my brain.

My health is good otherwise. I had scans last week and again, there was shrinkage of all lesions. There was one small lesion in my lower right lung which apparently shows necrotic (dead) tissue at its edges. Very good! The liver mets have all decreased in size as has the pelvic mass. So I am currently cruising through cycle 5 of Sutent. Each cycle is a little different in terms of side effects. Last cycle gastric troubles were my main complaint; they have continued but are responding pretty well to immodium. My tongue really swelled up in spots but that has receded too, leaving just the sensitivity to heat and spice that I have become accustomed to. I am noticing soreness in my feet, in the spots where I have calluses, that I suspect are not sore because of any shoes I wore but because of the medication. This is disappointing in terms of doing any real walking but I am hoping the soreness levels off. Fatigue is still part of my days too but not keeping me from my daily activities.

However, my body is fond of throwing me curve balls, and has done so again. A few weeks ago, I had a few days of menstrual type spotting. I should have no spotting now that I am ovary-less, so I dutifully reported this to my Gyn and my oncology nurse. The Gyn ordered an ultrasound, which discovered a polyp in my uterus. Any growth is concerning when one has metastatic kidney cancer, but this could just be a benign growth; they aren't rare. Unfortunately, to remove it, I have to have an outpatient surgical procedure, next Monday, the 28th of Feb. When I first learned of the need for surgery, I actually cried, tears of frustration mostly. I had so hoped that I would make it through one year without undergoing any invasive procedures, so this was a huge disappointment. The up side is that it is outpatient, and I should only have to take off work for up to 3 days. They will send the polyp for pathology, but even if it proves to be RCC, I will still continue with Sutent since my response has been otherwise very positive.

It's always something...

Still here!

2011-01-24T05:33:00.000-05:00

Two months since my last post... ugh. There are lots of thoughts flying around in my head, all the time, but it's just exhausting to even consider expressing them here. Working full time, taking care of two kids, trying to find some quality time with husband and with friends, doesn't leave a lot of time or energy for much else.

Physically I am feeling pretty good right now. I am just finishing my 4th cycle of Sutent; I have scans scheduled for mid February so we'll see if the shrinkage continues. The side effects from Sutent have stabilized somewhat. My tongue no longer sports so many different levels and hues, though my mouth continues to be quite sensitive to heat, cold and spice, and my sense of taste remains somewhat off. My digestive system continues to work at light speed, though fortunately it gives me enough warning that I am rarely in panic mode in terms of finding a bathroom. I do get more tired than I remember being pre-Sutent and I am trying to get more sleep, which I need anyhow. That being said, I woke at about 3:30 this morning and couldn't fall back asleep, so here I am. Last week I started trying to get more physical activity; wearing my pedometer and trying to get more steps in. I did a little walking during the day at work; one day walked a mile with two of my coworkers and was just exhausted that evening. I'm hoping that since I am starting on my 2 week break in a few days that I can get the walking going more consistently, so that once I am back in Sutent's clutches, I'm already in the physical and psychological habit of exercise.

Our holidays were good; the girls had a wonderful Christmas and we all enjoyed ourselves. I was able to take the week between Christmas and New Years off from work, to spend with them. That was the first time in my adult life that I've been on vacation that week; the only other times I have been home over the holidays like that I was on either maternity or medical leave. It was really wonderful. We did something each day, nothing major but some kind of outing or activity. By the end of the week at home I was thoroughly sick of listening to sisterly bickering and of brokering screaming fights, but that is life with kids.

Recently I've started to shift my mind set a bit about 'things'. I don't live with a conscious daily fear of dying soon, but on the other hand I don't want to keep waiting to do or have things that would make me happy. One example of this shift is that in December I bought a new office chair for my home office. The chair I was using was pretty old and while not exactly uncomfortable, not very plush either. For a long time I've told Jim that 'one of these days' I was going to save up to buy a new office chair. Shortly after Thanksgiving he mentioned a sale on a particular 'executive' office chair at a local office supply store. Part of me said, no, don't even look at it... wait until you have money saved up for it. But then I thought, why? Why should I not be comfortable now? So I looked the chair up online and saw that it had very positive reviews. I stopped at the store on a snowy night after work and tested it out; it was lovely... The salesman was very knowledgeable, and very nice. He did try to upsell me to another chair that was a bit more expensive, but didn't push me. For a small fee he could assemble the chair for me, which I knew would make Jim very happy. (Ask him about the mini Jeep we got the girls last year...) I picked the chair up a few days later and have enjoyed it ever since. Now I really want to redo my office configuration, so I'm thinking about exactly what I want to do so that I can get started. The girls like to sit in the office with me when I am at the computer, and so I'd really like to put a loveseat in here so that they can both relax here. I also need to reconfigure my computer desk because I want to get a second monitor. We have two monitors at our workstations at work and I have fallen in love with that second monitor. When I work from home I feel somewhat handicapped by having only one! So that's on my home bucket list as well.

First though, we need to get our house in order, in terms of all the clutter and junk we have filled it with. Rebecca's first communion is in May, so that is our target for getting ourselves together. It's going pretty slowly right now, but we're working toward it. At this point I wouldn't mind renting a dumpster and just tossing a ton of stuff... really... just to be rid of it. I just need to work up the energy to really tear through the stuff.

Looking ahead, I want to see what we can handle in terms of a bit of traveling. Money is still tight, as Jim has had no luck in finding a new job, but I still want to find a way to do some things we've wanted to do. And while I am not expecting that I will be feeling less healthy (or worse) soon, I still feel the sense of urgency to enjoy what we can of life now. I have some money put aside that my dad left me, money that is primarily intended for either our retirement years or to be left for the girls. Recently I've started thinking about using some of that money now, for travel, for our house, for things that would make our lives richer and happier now. If my time here is short, then it will be a good investment in our family's life together. And if, as I hope and anticipate, I'm here kicking around for decades to come, then we'll have even more happy memories to share.

Eight already

2010-11-26T22:39:00.000-05:00

My darling Rebecca,

Eight years ago today you entered our world, and changed it, for the absolute better. I'm still wrapping my head around you being eight years old. I can still vividly remember sitting in my hospital room on our first Thanksgiving, when you were two days old. As I sat there, I calculated when your birthday would actually fall on Thanksgiving, and figured that it would happen on your seventh birthday. I couldn't conceive of this tiny baby that was you, ever being seven. And now that is a year ago!

Your birthday celebrations were quite fun. Like we did for your sister, we had your family party at the cabin at one of our local parks. This time it didn't rain, so you and your cousins were able to play at the nearby playground. The next day, you got to have a 'friends party'; we hadn't done one of those in a few years. This year was a good time to have one, since there are a lot of girls in your class at school this year who you didn't know from first grade, and I hoped a party would help you all to get to know one another better. You chose to have the party at a local paint-your-own-pottery place, and everyone had a blast. Your friends each painted an animal figure from a few choices you had pre-selected - an elephant, a giraffe, and a ladybug. As the birthday girl, I let you pick a larger figure for yourself, and you picked an angelfish, which you worked very hard on. For refreshments, we served cupcakes, which you and I made that morning. We'll be able to pick up your birthday item tomorrow; I can't wait to see how your fish came out. Last year you attended a birthday party at this same place, and while there, you painted a small fish figurine for me, as a welcome home gift since I had just returned from Columbus and my final week of IL-2 treatments. Your aunt Sherry took you to the party so that I could stay home and Daddy could deal with Carly, and she paid for the fish so that you could give it to me. It is beautiful and has pride of place on top of our china cabinet.

Today we went back to paint more pottery, since we'd had such a good time, we wanted to make some Christmas ornaments, and they were offering half off on studio time for Black Friday. Aunt Sherry came with us, along with Aunt Barbie and your cousin Marty. We had a great time making lots of items... some of which have to remain secrets for now as they are going to be gifts later. It was a fun way to spend part of your birthday.

Second grade has been a change from first grade for you, but you've adapted very well. Your teacher this year started out the year with a stricter attitude than your teachers last year showed, but as the year has gone one, and as I predicted, you've gotten to know one another better and so you are enjoying being in her class. At your recent parent-teacher conference, she gave you glowing reviews, telling us that she had nothing bad to say about you, and that she wished all her students were like you. She told us about the work you're doing and gave us examples of how well you're working in class. One neat example was about you wanting to search online for recycle facts during recycling week. You didn't know how to spell the word 'recycle' to enter it in the search bar. One of your classmates was laughing about that, but you thought about how you could find out the spelling without asking your teacher. You remembered that the word was written on the side of the recycle box in the classroom, so you went over to the box to memorize the spelling. Your teacher was impressed with your resourcefulness; so were Daddy and me. We are constantly amazed... well not really amazed, knowing you as we do, but impressed by the way your mind works. You are a big note writer, and your notes are well written. You use notes to start conversations with us sometimes, and it's a great idea. You adore reading and have really started to embrace chapter books. As a lover of reading myself, I am thrilled to see you loving books so much.

Dance is still a passion of yours. For a while you preferred your jazz class to your ballet, but now you seem to love them both equally. I got to watch your whole ballet class this week, something I don't normally get to do given my work schedule. You are focused and you remember a lot. It was great fun to see how much you've learned and how well you apply it. You'd like to try tap dancing as well, but it's not been easy to fit into our schedule so far.

You branched out into some team sports this year too. During the summer you played softball for the first time, and really enjoyed it. You are a good fielder and a better hitter. We all enjoyed going to your games. Then this fall you tried soccer and found that you really like it. Even though some of the girls have played in prior seasons, you got up to speed quickly. At your practices I could see again your focus and your desire to "get it right" when practicing different moves. During the season you found your niche playing defense, and prevented many points from being scored against your team. Your coaches had lots of praise for you, and Daddy and I were really proud to watch you play. One Saturday your league had a 3 on 3 tournament. Your teammates were girls you didn't know, but you did fine with them. At one point two moms I didn't know were standing behind me talking about a really good player on the field. I realized that they were talking about you! That made me feel extra proud since they didn't know you, didn't know me, and so were merely noting your skills. You are excited to continue soccer in the spring, and so I am happy to go be a soccer mom while you play.

This fall you got your first pair of glasses, as we discovered that you are a bit nearsighted. You've adjusted to them very well. I told you that I was envious that you had such cool choices of frames; when I got glasses for the first time at age eight, the choices were all ugly! You can see so much better now, especially when reading, and so I am glad that you have the glasses.

You are truly a light in my life, Rebecca; I am so happy and proud to be your mom. Tomorrow I will post some photos of you. :-)

Where to begin...

2010-11-19T07:00:00.000-05:00

... when you've been avoiding writing? Admittedly, my days have been so full, and my thyroid tanked (again) so I was pretty fatigued until my medication was adjusted (again). But more than that, I think I've just felt at a loss for words at times, and too full of them at others. A few of you have kindly reminded me that I haven't posted in a while, and knowing that you care makes me feel all warm and fuzzy... even while I'm apologizing for not keeping up to date here.

I'll begin with good news. I finished my second cycle of Sutent at the beginning of November, and had scans two weeks ago. Chest CT, abdominal and pelvic MRI, blood work and a doctor visit all in one day. Amazing how tiring that was... of course I was still hypothyroid at that point but didn't know it. My appointment with Dr. Rini was at 1PM. Unfortunately, at that point he had results of my CT (clear, still, excellent) but the MRI results had not come in yet. Since I'd taken the day off from work, I had no problem waiting, so I sat in the exam room reading and playing on my DS. He checked in once, then Shari, his NP, checked in once, both offering me the option to stay or go. At about 2:30 I thought, maybe I will just go, but then a few minutes later the door opened to a smiling Dr. Rini. He was smiling because the news was good. There was shrinkage of all masses in my liver, shrinkage of the mass in my pelvis, and two masses in my right kidney, which I hadn't realized were there, disappeared. So, the Sutent is definitely doing its job. The plan is for for me to go through two more cycles, and be scanned again around late January. As long as the Sutent is still doing well, and I am still tolerating it, we'll then go three cycles before scanning again. It was wonderful news that was well worth waiting for.

The side effects of the Sutent are not fun, but I am soldiering through. This time my mouth sensitivity was pretty pronounced, and at the end of the cycle I had a bump in the middle of my tongue toward the back that was super annoying. I am very sensitive to temperature and seasoning while on the drug... one night we were eating meatloaf for dinner and I thought, crap, I put in too much of the seasoning I normally use. However, I noticed that Jim and the girls were all eating without complaint... the girls would definitely speak up, and loudly, if the meatloaf was "too spicy". I asked Jim, "is the meatloaf too seasoned, or is it me?" It was me. One day I went down to the cafeteria at work with a couple of my team mates. We were wondering what one of the soups was like, so two of us tried a spoonful. I immediately burned my tongue, and had a red spot on it for the rest of the day. That will teach me... and the soup was not all that great anyhow. Probably a good thing, because if I'd bought it, I wouldn't have been able to enjoy it anyhow.

You'd think that with such tongue and taste problems, that I'd be withering away due to some amazing weight loss, right? Not so much... I realized late in the cycle that I was eating even when it wasn't comfortable to my mouth, trying to soothe my feelings, I think. Now that I am on this targeted therapy, I am definitely more aware of the potential for this cancer to not just go away, to not just be able to be cut out of me as it's done in the past. I am getting back on top of things lately, so hopefully I can overcome that bit of panic and not sabotage my health further.

These feelings of terror/sadness/mortality have been heightened by the recent deaths of a few people in the kidney cancer community. The passing of my friend Angelo was the most upsetting, as he and I shared the bond of being parents to young children. When I first started investigating treatments for metastatic renal cell, I happened across Angelo's blog. At that point he was undergoing HDIL-2, and I read his story with great interest. The IL-2 did not work for him, but he was able to get into a clinical trial that did wonders for his mets. Unfortunately he had brain metastases, and while they were able to be treated, swelling in his brain causes seizures, and the steroids used to treat it suppressed his immune system. He had so much optimism about beating his cancer, and the next thing anyone knew, he was gone. It really shook me to learn of his death. We'd never met, we'd never spoken on the phone, but his death hit me like he was someone I saw daily.

Angelo's story also brought back memories of my friend Deb, who was another victim of brain mets, in her case, from breast cancer. The first anniversary of her death is coming up in a few weeks, and I still miss her a lot. I keep in touch with her husband and her daughter, which has been wonderful. I can only imagine how hard this last year has been for them. She still guides and mentors me; while I don't consciously think "what would Deb do?", I notice that I've internalized advice that she offered over the years. She was also the most optimistic cancer fighter I have ever met. I feel that she's up in Heaven keeping an eye on me and telling me to keep fighting.

Lots more to spill, but I need to get up from this keyboard or I will never get my day started. This weekend will be cra-zee... Rebecca's family birthday party is tomorrow, and we're having a party for her school friends on Sunday. Hello fun, goodbye weekend! So, the rest of my random thoughts will have to wait before they can be revealed... I'm sure you're on the edge of your seat, no?

A good read

2010-11-14T11:23:00.000-05:00

Chris is a fellow member of the kidney cancer online community, and a fellow member of Club HDIL-2. This article which he wrote for Arkansas Life is both hysterical and informative, so check it out:

http://app-hosting.net/ackc/Fat_Man_of_Cancer.pdf

And yes, Minnie, I promise an update of my own soon... it's been too long!

Thank you and quick update

2010-10-14T22:00:00.000-04:00

I want to publicly thank my coworker or coworkers who recently donated unused Paid Time Off hours to me. I recently received a nice check that was very much appreciated and will be put to good use. The pundits who say the economic recovery in the US is here don't live near us, that is for sure. Jim is still looking for a job and the pickings are very slim. Bleah. If something doesn't give soon, Carly will have to leave her preschool. That would be a shame because she is doing so well in her new class, and really enjoys it there. We will see...

I'm a week into my second cycle of Sutent. So far, so good... my tongue has an interesting line of demarcation on it; from the line to the tip it's more sensitive and the surface is bumpier. It's sensitive to heat and spice, as it was last cycle; I'm just waiting to see if it gets more pronounced as the level of drug builds up in my system. My digestive system is also a bit wonky again, but fortunately so far nothing major. This afternoon I was looking in the mirror in the restroom at work and noticed that my eyebrows look very white. The light in the lavatory is horrible so I wasn't sure I could trust what I saw. So, I marched into my coworker Patty's cubicle and asked her what she thought. She confirmed the whiteness... I'm not a makeup girl most of the time but I might start back up now...

I think I have more to say, but I've been interrupted a number of times already, so I'll have to try to regroup later. Ta ta...

Out of the mouths of babes

2010-10-09T21:23:00.000-04:00

So tonight I was ~~feeding my addiction~~ playing a few games of Bejeweled Blitz on Facebook. At the beginning of each game, a voice says, "One minute. GO." I responded to the voice, saying "Don't tell me what to do, guy." Carly was sitting by me looking at a book and heard the exchange. She piped up with, "yeah, you can't tell her what to do. She's the boss here."

Wow... she actually admitted it! Yeah me!

Of course she then amended that statement to say "Mommy and *I* are the bosses here." Not so much, but funny anyhow.

The best was the other day... First the quote from Rebecca:

"You know, it's not all about you on top of her."

Before you start wondering what kind of house we're running here, I will explain. Bailey, our older, larger, male dog, wants very much to be the alpha dog in our house. Unfortunately for him our other dog, Trixie, was a breeding dog in a puppy mill for about five years before she was rescued. Because of this, she doesn't really know how to be a dog most of the time. This even extends to pack rules. For example, if Bailey is eating or drinking from the communal bowls and and she wants to eat or drink, she will just come up to the bowls, and slide in under his head. He doesn't contest her movements, instead like a gentleman he lets her in, but it bothers him. Also, when they receive treats, he will usually bite his in half and eat the pieces that way. Trixie has been known to run up and take the half treat that is on the floor, having already gobbled her treat. Poor Bay is left standing there kind of stunned.

But he tries to be dominant, by mounting her at various times throughout the day, especially in the kitchen. Rebecca was getting something in the kitchen and found her path blocked by Bailey and his attempt to attain alpha status. Her comment was not heeded by Bailey, but Jim and I fell over ourselves laughing.

Never a dull moment around here.

My baby girl is five

2010-10-06T22:05:00.000-04:00

Dear Carly, today we celebrated your fifth birthday. On this day five years ago you joined our family and made it complete. Everyone was so happy and excited to meet you, especially your big sister.

Looking at your ever growing self, it's hard for me to remember that I could rest you on my chest, like I did at the hospital, gazing at your thick head of hair and your tiny features.

There's no way you would sit still like this today!

After a few days, we were all home together, where I could enjoy being with my three favorite people.

It's been a joy watching you grow up from that tiny baby. At age two your baby face was still evident, even though you considered yourself quite the big girl.

You went through your 'terrible twos' as a very defiant, very loud, very stubborn little girl. Daddy hoped that once you were three you would revert to the sweetness of your babyhood. A full tantrum you threw on the morning of your third birthday disabused him of that notion immediately. However, you could also be quite sweet and loving, then as now.

By age four you had developed a swagger, along with an extensive vocabulary and immense observation skills. Nothing escapes your notice!

This year, it was hard for you to say goodbye to the friends who left for kindergarten. Your October birthday makes you a bit too young to join them this year. Luckily, you've made many friends in your new class, Pre-K 2, and you love your teacher, Ms. Tiffany. You told Ms. Tiffany all about how Rebecca has homework to do every night, and how you wished you did too, so she sent home some papers for you to work on at home. You started playing soccer this year, on a team called the Greyhounds, and you have been having so much fun there.

Carly, you are a girl of many interests. Along with soccer, you are learning ballet, and at school you have the opportunity to do gymnastics and karate. The gymnastics in particular is a natural for you and your high energy level. I love that you have all of these opportunities to try so many fun activities. At home, you like making art and playing with your dolls and toys, especially your mini veterinarian office, where you and Rebecca spend many hours together treating your stuffed animals. You've gotten good at using the mouse on the computer and so computer games and activities have become a lot of fun for you. At Webkinz you have a dog named Hugger who has the most elaborate rooms I have ever seen, all decorated by you using your imagination. Sometimes you and I play some of your Webkinz games together, because (shh, don't tell anyone) I think some of those games are a lot of fun too!

Finally you're starting to slow down some, in terms of your need to be a blur of motion and sound. You and I have spent some wonderful evenings cuddled together reading, watching TV or just talking. You have matured enough to understand that you need to be gentle with Trixie, our skittish rescue dog, and so now instead of hiding from you, she welcomes your gentle petting and the "relly bubs" you give her.

My sweet Caroline, I love you with my whole heart, and I look forward to sharing with you all the adventures of being five years old.

Love,

Mama

Calling Dr. Rebecca

2010-09-26T21:14:00.000-04:00

This afternoon the girls were playing with the Barbie(tm) vet station that Carly got for Christmas last year. (And yes, it is bright Barbie(tm) pink). Rebecca created a medical chart for one of her patients, a stuffed animal named Sprinkles:

In case you can't read it:

P's name (patient's name) Sprinkles (note the fancy lowercase k - a second grade handwriting convention)

Pane: apparently bad, as she drew the Wong Baker faces pain scale and circled the second to last one

Sicknis: brokein leg

Doc's name Rebecca Monahan (looks like she attempted a cursive signature)

Anamil: cow (Sprinkles is actually a hippo but I'm not telling)

Cards: 24 (I didn't know what this meant. Rebecca said that is how many get well cards Sprinkles has received. In all my hospital stays I have never had anyone log my cards!)

Blood presher: 100 (Seems to be missing part of the equation so I'm not sure if that is low or high)

room: 147

cuyer: surgrey (I didn't know what this was - it is cure: surgery)

Later she and her sister were playing with a Lego set, building houses and cars and such. She told me that she made a wheelchair for one of her patients, who has cancer. Wow. Luckily apparently the cancer only caused him to be in a wheelchair; from what I heard he was pretty active otherwise.

Currently on break

2010-09-26T18:20:00.000-04:00

... though it seems like I've been on break from this blog for a while. I have wanted to write, but in fact have just been too tired. My energy level picked up immensely once my increased dose of thyroid medication kicked in, but by the end of the day I am just worn out. Toward the end of this Sutent cycle my digestive problems seemed to ease off, and my mouth sores never bloomed to full sores, which was a relief. On the other hand, food just doesn't taste quite right while on the medication, my tongue is very sensitive to heat and spice, and water tastes funny. That last one is bad, because I need to make sure I keep drinking my water. My last pill of this cycle was Tuesday night, and as of this weekend my mouth felt much better. We're having Carly's birthday party for the family next weekend, so the timing is perfect in terms of how I feel.

We celebrated my forth-sixth birthday yesterday. It started out like the usual Saturday, with running around to soccer games and dance lessons. Jim and I had to split up this week because the girls' soccer games were at the same time. I was with Becky and on our way to her dance class, we noticed that a local garden center was having a fall festival, with a number of activities including meeting some adoptable dogs and cats from the Animal Protective League. We decided we'd stop at the festival after class, and I texted Jim to let him know what we were doing. He and Carly were off on some birthday errands but joined us afterward. The weather was cool and breezy but otherwise nice; the girls had fun with activities and games. We picked out a couple of pumpkins for our front step and also bought some flower bulbs to plant for next spring. It's been years since I've planted bulbs, and I don't think I have planted any since moving to our current house. Last fall I wanted to plant some but didn't have the energy after my first two cycles of IL-2. This year we're doing it though. I really want to see some color in our yard in the spring. We got some tulips, hyacinths and windflowers. It should look nice, as long as the local critters don't dig up my bulbs. I am not a natural gardener by any stretch but I do want to work on making our yard more beautiful... while at the same time not making a lot of work for myself. In the spring I hope to pick out some perennials to add to the color-fest.

Another reason I haven't written recently is that I just don't know how to describe my feelings right now. My last post touched on it, but there's more under the surface that I find hard putting to words. Part of it is an increased sense of my own mortality, for sure. Also, I feel that my faith has been shaken by the progression of the cancer. It's impossible for me to understand how my loving God would be okay with me dying while trying to raise young daughters, children who I wanted for so long and whose lives I thrive on being part of. Funnily enough, I am going to mass now, where I didn't much during the spring and summer, mainly because Carly has Sunday School during mass which gives me the push to go. While I am there, I talk to God and ask him to please let me have more time with my family, so that I can be with them and they don't have to function without me. I know many people can rationalize all of this, but I'm having a hard time with it right now.

I also ask God to help Jim in his job search. There has just been so little out there to even apply for. He did get a call based on a resume he'd sent out a while back, and had a terrific phone interview. They had him come in the next day for an in-person interview and he could tell it wasn't going to work out, based on the questions the second person in the interview asked. Sure enough, he got a rejection letter this week. He said that the experience wasn't a loss, since interviews are always good experience, but he's really tired of looking. And it seems that everyone wants some experience or certification that he just hasn't gotten, or gotten to. Very depressing. He'd like to do something else that he would enjoy, and I'm all for that, regardless of what the salary level would be. Unfortunately, neither of us knows what that would be.

Kid speak - 09/10/10 edition

2010-09-13T16:36:00.000-04:00

Last Friday I tried to call home a few times while on my way there from work, but the line was busy. When I arrived at home, Jim told me that nobody had been on the phone, and sure enough, when he tried to call the house phone from his cell, he got a busy signal. We have two corded phones in our house. One is in my office and gets knocked off the hook every so often. Rebecca went upstairs to check it but it wasn't the culprit. There is another corded phone in the 'toy room' where the girls keep their playthings. Carly disappeared down the hallway as Jim and I talked. I called out to Rebecca to go check the toy room phone. Carly could hear my request, because she called back to me, "I'm already on it!"

She'll be five next month. Five. Did you know the meaning of the phrase "I'm already on it" at that age?

Taking it day by day

2010-09-13T16:31:00.000-04:00

Going back to work and starting drug therapy... it's an exhausting combination. Combine that with the beginning of a new school year and new fall activities schedule and it becomes a merry go round spinning ever faster. Not really a fun place to be, especially when said drug therapy's side effects include nausea.

I'm in the second half of my first cycle of Sutent; 9 pills to go and I get a 14 day reprieve. The first couple of days were fine, since it was just starting to build up in my system. And while I haven't experienced anything debilitating, I have definitely had effects. My tongue started to develop sores after the first week, causing me to call for a prescription for Magic Mouthwash, my old nemesis of IL-2 days. I HATE HATE HATE that stuff, but I know that it helps, so I have been using it, though not as frequently as I should. Fortunately the sores never became full-blown, but my tongue is definitely sensitive. Hot foods or remotely spicy ones hurt. I have an odd taste in my mouth as well, not exactly metallic, but different. I notice it most when drinking water.

My digestive system is in a bit of an uproar because of the drug too. I had one bout of diarrhea early on, and took something for it, on the advice of my nurse practitioner; luckily it didn't return. Instead I have gas that often feels like it is trapped deep inside me, painfully so at times. It sits low in my abdomen, causing a sensation not unlike menstrual cramps. This is a particularly unfair situation, since the loss of my ovaries was supposed to exempt me from such feelings! And as the time on Sutent passes, I have felt increasing fatigue. I had bloodwork drawn last week and discovered the reason for my fatigue was that my thyroid is moving ever more hypo-... a common side effect. I had my T4 level drawn the day I started treatment; the reading was 4.54, with the normal range being between 0.4 and 5.5uU/mL. My reading on September 8 was 12.46. Wow. No wonder I've been feeling like I am dragging myself around. Hopefully a few days on the higher dose of thyroid medication will put me back to feeling pretty good.

I try not to comment too much at home about how I'm feeling from Sutent so as not to keep the girls' focus on it. Both had transition at the end of August; Rebecca started second grade and Carly moved to a new room at preschool. They restarted dance classes this week and both are playing rec league soccer this season. Next to add is PSR classes starting next week. So much to do; Jim does a lot of the running around but I am the schedule tracker so I need to make sure we're all aware of who needs to be where, when, and with what

"stuff". In private moments, I do comment on/complain a bit to Jim about side effects I'm experiencing. He's good about listening to me and I know that's what he's there for, but I also sense his increased worry about me. This is the first time I'm really "feeling" like a cancer patient. Obviously I felt pretty crappy during and directly after my IL-2 treatments, but we knew those side effects wouldn't last, and that I would feel better the farther from the treatments I got. This is different. I'm on this drug for the foreseeable future; until either it stops working or I can't tolerate side effects from it, in which case I would be put on a different drug. I think that the reality of my situation has hit me in a new way. Despite all of my surgeries, and my IL-2 treatment, a part of me has been in denial that I actually have this disease. I think that I've been hoping all along that I would be "cured" by either a surgery or the IL-2. And I have never felt like a "sick" person... after having my kidney out, I have never felt unwell due to the cancer. The side effects of the Sutent have changed that, making me feel like someone who is chronically ill. I do understand that I am on my first cycle, and that in time, my side effects can decrease. And I know that while I feel like crap at times, I am still functioning far better than many people I know, even those without cancer. But sometimes when I'm in the middle of feeling unwell, it's difficult to imagine that I might feel better one of these days. This is so hard to describe, and I'm not sure I'm doing a very effective job of it right now, but it's been on my mind.

Moving along

2010-08-27T23:45:00.000-04:00

It's been a busy week, for someone on medical leave. On Monday I saw Dr. Drake for my post-surgical follow up. In his words, "Girl, you heal fast!" I always seem to from surgery, with one notable exception that was not my body's fault. He cleared me to start systemic treatment, and told me I was okay to go back to work the next week. What a wonderful man; very concerned about me, told me that he'd even consulted with the surgeon who performed my nephrectomy in 2005. At the end of the appointment he gave me a big hug.

Wednesday was Rebecca's first day of second grade. She was very nervous the night before, to the point of making herself sick, with worries about whether her teacher would be nice or mean, and if she would be able to do second grade work. Fortunately, she woke up with a much sunnier attitude and was all smiles as she got on the school bus. I missed seeing her get off the bus in the afternoon (see below) so she called my cell to tell me about her day. It sounds like her teacher is pretty strict, pretty serious. I hope that the atmosphere loosens up once the school year is well underway. Several people have mentioned that this is a good teacher, so maybe she's one of those who isn't as friendly as some teachers, but really gets the kids to learn... the most important thing. Getting off the bus at home is new for Rebecca; last year she went to the after care program at the same place Carly attends preschool. We decided that while Jim is still unemployed, Rebecca will just come home directly, saving us that tuition. Hopefully we can keep Carly enrolled because I think she can really benefit from the program; it will depend on our bills and on how long Jim continues to receive unemployment. Carly moved to a new classroom this week; she is now officially in Pre-K 2. It's a smaller class, 12 instead of 25 or so. Carly started there Wednesday as well, and that morning was very tearful about it. As we talked about her anxiety, I learned that she was upset because her new class is in the basement at her school. She was afraid that if they were to have "a real fire drill" (aka an actual fire) that she would not get out of the building in time. I mentioned this to her teacher, who told me that this was one of the subjects she was planning to discuss and to reassure the students about. Sure enough, that afternoon Carly was all smiles when she came home, announcing that she LOVES her new class. Here are both girls on their first day:

On Wednesday afternoon I saw my oncologist Dr. Rini about starting systemic therapy. Quick lesson for newer readers: renal cell carcinoma (kidney cancer) doesn't respond to traditional chemotherapies, that is, drugs that work to kill the cancer cells in the body. For many years, the only treatment was High Dose Interleukin-2, which is extremely toxic and has a low response rate. In the past several years, a number of drugs have been approved to treat kidney cancer via anti-angiogenesis. These drugs stop the growth of new blood vessels, thus cutting off the 'food supply' to tumors. I remember when my dad was being treated for lung cancer in the late 1990s, he read something about the then experimental idea of anti-angiogenesis and was fascinated. Who knew that more than a decade later, this process would become very important to my life? Dr. Rini and I had pretty much decided at my last visit that I would try the first and most popular drug, Sutent. It's a pill that I am to take once a day for 28 days. I then have 14 days off the medication, then start it again for 28 days. After two cycles they will re-scan me to see if the drug is helping me. The scan reports were unclear about exactly what we're looking at; they mentioned possible new mets in my liver, though they were comparing the MRI to a previous CT scan, which means that they were looking at apples and oranges, basically. The mesentery mass still exists of course, and a left adnexal mass by the uterus was noted as still being there. I had been under the impression that they were removing that mass in my surgery but I guess not. There was one sentence on the MRI that scared me, however. I don't have the exact wording right now; I didn't get a hard copy of the report at the appointment, and so I need to have my results put into my electronic medical record. At any rate, something indeterminate was noticed at my L-2 vertebra. It could be nothing, or it could be the start of bone metastases. I asked Dr. Rini about it and he said that there is really no information about it at this point, so while it's not an area that will be looked at in terms of assessing whether Sutent is halting progression of the cancer, it is something that will be watched in future scans.

I feel so out-of-control about my situation right now. How did I end up here? Statistically I wasn't supposed to have any recurrence once the kidney was removed. But here I am now. It baffles me and it scares me more than I want it to, though I will continue to throw everything I can at it.

Thursday was open house at Rebecca's school. Yes, on the evening of the second day of the year. What is that all about? The teacher was polite but had little to say. She did ask Rebecca if she had told us of her 'big' award that day, which Rebecca had... if a student is behaving particularly well, they get an "Emmy Award" to place on their desk for that morning or afternoon. Rebecca earned the Emmy that day, which didn't surprise me at all. As we walked out of the classroom, Jim asked me what people were signing up for on the wall. Turns out it was the conference schedule; had Jim not noticed it, I would have completely missed it. The teacher hadn't mentioned it to us. Luckily since we were there right at the start of open house, we got a desirable slot for us.

Then today Jim and I got a chance to do some real clearing out at home. He's been working on clearing out the garage, and earlier this week we were able to get two boxes of stuff into the trash. We found an item of my dad's that my sister had been looking for, so she was able to get that, along with some other items; two more boxes' worth... yeah! Then Jim's brother's family was having a garage sale this weekend, and my sister in law (SIL) had asked me if I wanted to bring anything to sell along with their stuff. We have a stroller that nobody in our circle of family or friends needs, that my SIL knew I wanted to get rid of. I could think of a few other candidates to try to sell too. So, this morning after the girls went to school Jim and I loaded up the van... along with the stroller were a sump pump (bought new for my dad's house but dissed by the inspector hired by our buyer, so Jim ended up re-installing the old one!), a deep fryer, some various electric decorative items that were never used, and a light therapy box. I then went into the kids' stuff and got out a riding toy that Carly is too big for, a set of squishy 'tiles' that have cutout alphabet blocks, and some unopened buckets of sand toys. In the garage Jim found a toddler seat that straps onto a chair, and a plastic easel that he'd pulled out of the trash at some point. We put the stuff out at the sale and sold over half of it in four hours' time. In fact, as I walked up the driveway with the first load of stuff, a lady stopped me and bought the package of squishy tiles right there! We had to leave the sale before it closed for the day, but I think my SIL sold the stroller for us after we left. There is almost a clear wide path now from the garage door to the back of the garage now... so we're on our way to getting a car back in there... my car, thank-you-very-much.

The girls have been pestering us for a hamster for the past several weeks. We had told them that they need to really clean out their bedroom before we would consider it. Today I discussed it with them and we decided that if they could pick some toys that they could part with, we'd see if those toys would sell at the second day of the garage sale. Any money we make from the toys will go toward hamster expenses. It will be interesting to see what they decide thy don't need any longer!

I hope we can keep up this momentum once I get back to work next week. I like having clear, open spaces in the house and we've had too few of those for too long. And right now the house is not company-ready at ALL. I really want to have people over more, to spend as much time as we can with the people we care about. Maybe as we declutter the house, my body will declutter the cancer. That would be the ultimate.

Sneaky mama

2010-08-17T22:35:00.000-04:00

Tonight Carly was very angry with me for not letting her do something she wanted to do at bedtime. I laid down in bed with her as she fell asleep. She told me that she doesn't like me. I understand, I said, but I still like you.

Then, to get more of a response, she said, rather quietly, "I hate you."

"Well, I can't stop you from hating me, but I still love you anyhow. Even if I were mad at you, I would still love you."

Hm, that didn't work on mama... let's try another tactic:

"I'm not going to sleep here anymore."

"No, sweetie? Where are you going to go?"

"The woods."

"Oh, okay. Will you just sleep outside or will you have a tent?"

"A tent"

"Good idea, Carly. You wouldn't want to get bit by the bugs." Our windows are open tonight and we can hear all the night sounds.

"Also the thunder, mama."

"Oh true, you'd need a tent to stay out of the rain."

"Or maybe I will live by S (friend from preschool)."

"Ok, will you live in her house or just by her house?"

"In her house. And I will eat their food if it is okay with her mom. I wonder if I will like what they have to eat. Maybe they will not have some things that I like, like lasagna. They definitely won't have Cinnamon Toast Crunch."

"Yeah, it's hard to know. I wonder if they have enough beds for you. Maybe you will need to sleep on the floor in your sleeping bag."

"I will take my sleeping bag."

"Well, I will miss you... I hope you come back and visit sometimes, Carly."

"You can come visit ME, mama."

"True, maybe I can, if it's okay with S's mom. But I will still miss you a lot."

"You're trying to make me fall in love with you, mama!"

Sutent Nation welcomes Liz

2010-08-13T23:27:00.000-04:00

Back in 2006, when I was still statistically supposed to stay cancer free forever because my kidney tumor was "caught in time" I attended a kidney cancer patient support meeting at a local cancer support center. The speaker was a young doctor from Cleveland Clinic named Brian Rini. (cue foreshadowing) He spoke about the newest advances in drug treatment for metastatic kidney cancer. At that point one drug, Sutent, had been approved and a couple of others were close behind in the FDA approval process. He explained how the drugs were meant to work - they are anti-angiogenesis agents, which means that they stop the creation of new blood vessels to tumors. No new blood vessels = no nutrition for tumors to grow. The patient survival statistics he gave didn't sound all that great to me; I didn't know at the time that so early on in the drug's life, they just didn't have long term results yet, and didn't stop to think that many of the participants in the clinical trials were probably people who were very sick, looking for anything to try. I remember coming home that evening and telling Jim that I sure hoped I would never need drug treatment because Dr. Rini's talk had scared the bejeezus out of me; there was no 'curative' chemotherapy available and so the choices sounded frankly pretty crappy.

Fast forward 4 years... in that time I had a lung nodule scare, which caused my uro-surgeon to send me to an oncologist... the first appointment available being with one Dr. Brian Rini. The nodule turned out to be nothing and I enjoyed another 2 years of NVED status. That joy was blown away by finding single metastases in July 2008 (surgically removed), Nov 2008 (surgically removed). July 2009 scans brought the motherlode - multiple lesions in the liver and a lesion on the ovary. Goodbye surgery, hello High Dose Interleukin-2. The IL-2 appeared to do wonders for the liver mets but the ovarian mass continued to grow, decided to balance things out by appearing on the other ovary, and just for fun, adding a mass that attached itself to my colon. Last week's surgery caused me to go through menopause in 3 hours, but while my surgeon was able to remove the ovaries and their masses, he chose to leave the abdominal one behind. His thinking was that I was going to need drug therapy, so opening me up to remove that mass would have caused me a much longer recuperation period before I could begin drug therapy. (Oh and there's that pesky little business about how I would have had a temporary colostomy to deal with.)

Dr. Rini and I met today, to truly discuss drug therapy for the first time. He was in agreement with Dr. Drake's surgical decision. At this point it's clear that as much as we chase the cancer around my body and pluck it out, there are still cells in there, waiting for their chance to be "alpha dog". A couple of years ago I would have been willing to continue the chase, but even thick-headed me sees that it's never going to be the 'last one' removed surgically. So, the question became, what drug would he recommend? When we first talked about drug therapy last year, he recommended either Sutent or a clinical trial of two other drugs. Prior to today's visit, Jim and I discussed what options I might be offered this time, and Jim said what I was thinking... no clinical trials right now. Dr. Rini didn't mention trials this time anyhow. He felt that my best options right now would be Sutent, which is considered the gold standard for renal cell carcinoma, or a similar but newer drug called Votrient. Votrient is believed to maybe have fewer side effects than Sutent, but because it's so new, there's not much data on whether it's also more effective than Sutent. Dr. Rini started off by saying he had no real leaning toward one or the other, but it became clear as we talked that if he had to pick for me, he'd pick Sutent, which is what I did choose. He did also mention that since the liver mets are stable (except for the one that shrank, yay!) and the abdominal mass left seems stable, I could wait 3 months and re-scan before starting treatment. He and I both shook our heads "no" at that idea. Drugs are inevitable, and waiting 3 months might be okay, or might be a fertile breeding time for my cancer cells. After all, I had clean scans in April of 2009, and all hell broke loose as a result of July's scans.

I need to do some more healing from my surgery, as stopping my body from creating blood vessels might not be a good idea while it's trying to mend. Next week I will be going for scan-o-rama day on Tuesday... CT of head and chest, MRI of abdomen and pelvis. When we talked in May, Dr. Rini told me that he'd probably have me do MRI of abdomen and pelvis from now on, and a chest xray. I was surprised by that, and folks I know in the kidney cancer community were insistent that I should be having CT of the chest instead. I asked him about it today and as I suspected, he's mostly concerned about the amount of contrast I'm having to take (not good for kidneys!) but agreed that we'd get a CT this time for a baseline. I'll then see Dr. Rini on 8/25 and we'll decide when I start taking the Sutent.

It's an orally administered drug, so no having to go to the cancer center and be hooked up to an IV periodically. The dosing schedule is 28 days on, and then 14 days off. After two of those cycles I will have scans for comparison. If side effects make me too miserable, we'll look at changing the dosage. I asked Dr. Rini if it was reasonable to be able to keep working throughout treatment. He said absolutely, that was the goal, and that having the drug help get rid of the cancer isn't worth it if you are too sick. I was glad of that. Another thing I thought was cool was that as soon as we decided on Sutent, he paged a financial counselor to look into what my health insurance copay will be for the drug. I like that he was concerned about that aspect of the treatment; these drugs are EXPENSIVE. I'll find out next week just how expensive for us.

The side effects are just lovely; from the Sutent site they are listed as follows:

Common side effects

Patients who take SUTENT have these side effects more often than other side effects:

The medicine in SUTENT is yellow, and it may make your skin look yellow. Your skin and hair may get lighter in color
Tiredness
Weakness
Fever
Gastrointestinal symptoms, including diarrhea, nausea, vomiting, mouth sores, upset stomach, abdominal pain, and constipation. Talk with your healthcare provider about ways to handle these problems
Rash or other skin changes, including drier, thicker, or cracking skin
Blisters or a rash on the palms of your hands and soles of your feet
Taste changes
Loss of appetite
Pain or swelling in your arms or legs
Cough
Shortness of breath
Bleeding, such as nosebleeds or bleeding from cuts

I know many fellow kidney cancer patients who have had various combinations of the above; there's lots of information they have already and will share about combating these effects.

Sounds like a treat, doesn't it? I'll admit, I'm a bit scared that we've arrived at this point. But I also feel hopeful that we'll see good results with the treatment. And 5 other drugs have been approved since Sutent, so there are other avenues to try if it doesn't work for me.

Royalty

2010-08-09T21:51:00.000-04:00

After having surgery, many people rest, relax, take it easy. Not many are lucky enough to be able to spend some of their downtime making themselves into royalty!

The girls stayed home today; and while playing found a tiara making kit that Carly had received for her birthday but never opened. There were three tiaras included; perfect for our family since Jim is not into the bejeweled thing. So we girls sat at the kitchen table busily gluing bling onto our cardboard forms, then took them outside to photograph.

Bailey, King of Dogs, was not too impressed, but enjoyed the attention while also enjoying the sunshine.

48 hours ago

2010-08-08T12:41:00.000-04:00

48 hours ago I was deeply asleep, while my surgeon probed my pelvis. He found that both of my ovaries needed to be removed; we knew the right one was going but the left was questionable. He could tell by the sight of it that both had been invaded by renal cell carcinoma... so while that was not good news, it was far better than if they'd found ovarian cancer. Two primary cancers is something I don't need in my life! I have a hard time fitting one primary into my busy schedule. So, 48 hours ago I was a woman with eggs, old as they were, still inside me; now I am in menopause. But the removal of the cancer is far better - I wasn't really using the eggs anyhow. The hormones produced by the ovaries I will miss, but that can't be helped. Hopefully my transition into post-menopause land won't be harder on my family, friends and coworkers than in will be on me.

48 hours ago I had hope that all viewable cancer inside me would be removed in my surgery. However that wasn't meant to be. The one mass away from the pelvis seems have to communed with my colon, so the surgeon chose not to remove it. Removing it would have meant converting to an open procedure which would have a longer recovery time, thereby delaying the start of drug therapy. My sweet sweet husband, after talking with the surgeon, immediately called my oncologist to make an appointment to talk about systemic (drug) therapy. We'll see him on Friday, the 13th... hopefully not an omen of a date!

48 hours ago I assumed I'd be spending the night at the Hotel Cleveland Clinic; something I hate doing but knew was a necessity. It was hard on the girls when I told them I'd have to spend the night in the hospital, so we'd be apart two nights. But I told them that they could come with Daddy to pick me up, a small consolation but one that helped a bit. When I was in the PACU (post anesthesia care unit or what we used to know as recovery room) I started to find out that maybe this wasn't the plan. I asked the nurse when I would see my family, since I expected them to come into PACU to see me. She told me that once they moved me to the outpatient area, I would get to see them. Outpatient area... huh? Sure enough... after I'd been in PACU about an hour and a half, and my pain was under control, I was sent down to the same area I'd been in for pre-op... in fact only 3 rooms over from where I'd been just about 7 hours earlier. I was told by the nurse that once I was able to get up and use the bathroom, that if I wanted to go home, I could. I did have the option to stay overnight if I wanted to or felt that I needed to. I had actually convinced myself that an overnight stay would be okay, so that I would have the use of the moving bed and bed rail to get in and out of the bed that first night. But on the other hand, I would likely have the leg compression cuffs on, and an IV attached, which would mean I would still need assistance to use the bathroom. And the hospital is noisy and hot, and you never know who your roommate will be. So I chose to go home.

48 hours ago my girls thought they wouldn't see me until Saturday. Jim had called the day camp after surgery to let everyone know I was okay. On Carly's side the teacher relayed the message to her, which helped her feel better because "I was worried about you all day, Mama". My poor baby... On the 'big kids' side of the building, the teacher let Rebecca talk to Jim. He explained that Mom "might" come home on Friday or on Saturday, but that he would be the one picking her and her sister up that afternoon. Jim and I left the hospital around 3pm, after I had done the requisite peeing, gotten dressed, and received a dose of percocet for the road. We stopped for a small bite at McDonalds, dropped of my prescription, and went to pick up the girls. I of course stayed in the car. Rebecca about flew out the door of the school and into the car, where she lapsed into a stunned, happy silence. Carly was equally happy to see me. After that, we stopped at my sister's house (less than 2 miles away) to pick up the girls' overnight things, then to the pharmacy for my drugs, and were still home by 5 pm. So in less than 12 hours we were back home. Amazing.

48 hours later, I am sore, but the medication is very helpful. When awake, I feel good, very much like myself. I am napping more, and having the longest, weirdest dreams... fortunately not a bizarre as the ones I had during my IL-2 treatments. Friday night I slept in a recliner in the living room, with Rebecca in the room with me in case I needed help. Last night I slept in my own bed, and was able to sleep on my sides; what bliss. After the nephrectomy it was a good 3 weeks before I could do that, and I never properly appreciated how good it feels to sleep in bed until then. I have been good about taking it easy, though last night before I went upstairs I felt compelled to empty the dishwasher. Hm, maybe this surgery will turn me more domestic? Wouldn't that be nice! After I see Dr. Rini on the 13th, I'll have my follow up with Dr. Drake on the 23rd, which is Jim's and my anniversary. Hopefully at that point I'll be feeling well enough to go back to work. I will not push myself back too soon, but on the other hand, if I can do it, I'm not going to laze around the house for extra weeks of leave. We just can't afford that, since my short term disability pay is only 70%of my pay. But it will all work out, because it always does. I plan to remain here to pester my loved ones for quite some time still.

I know, I should be in bed...

2010-08-05T22:22:00.000-04:00

... seeing as how I have to be at Cleveland Clinic at the eye-rubbing hour of 6AM! I guess I'm the first procedure of the day. I'm actually glad of that, so that Jim can spend time with me then go home to the girls. They're at my sister's house tonight; he'll pick them up from day camp tomorrow. They took the news of my surgery better than I'd anticipated, mostly because I don't have to travel to another city this time. I told them they could come with Daddy to pick me up on Saturday, assuming that I'll be only staying the one night, and they liked that.

Today I felt anxious about the surgery; I can't put my finger on my specific thoughts but I just didn't feel confident that things will go well. Late this afternoon I decided that maybe I should take a xanax to help me sleep (since it worked so well last week!) But now I'm feeling more optimistic about it, and thinking that maybe my positive thoughts will influence what happens tomorrow. This idea shouldn't be a new one for me; in fact, it's a good outlook to have in general. However, I think I've been afraid to think positively in case something negative happens, so that I won't feel so crushed. That happened to me 2 years ago, when I had my first met removed. I'd been sure it was just an oversized lymph node; when they told me that it was in fact RCC I was stunned. But now that I'm firmly on Stage 4 Street I can handle this kind of news a little bit better... maybe not much better, but a little bit.

I took the day off from work and it's been a lazy one, other than catching up on laundry. I took Rebecca to Dick's Sporting Goods for her first pair of soccer cleats and shin guards. She is signed up for our local rec soccer league this fall, and I had enrolled her in a four-day skills camp to get her up to speed. Carly will be playing soccer this fall as well, but a group comes to her preschool every week and has a soccer class, so I'm not too concerned about her. Rebecca was pretty excited about the new shoes, and is looking forward to the season.

Afterward, we went to the library, so that I could stock up on reading materials for next week. She wanted to look for books too, now that she has become a real reader. She just finished her first chapter book, Beezus and Ramona. Her interest was sparked in the upcoming movie, but she really enjoyed the book and is now started on another Beverly Cleary book. I am so excited for her - there are so many good books out there! I told her that I had read Beezus and Ramona too, as well as a lot of other books we looked at today. We wanted to look something up in the library catalog so I coached her as she learned how to search on their computer system.

Carly chose not to come on our errands with us, so we had some nice one-on-one time.

Carly had something to say...

2010-08-05T21:59:00.000-04:00

Last night at Target, she kept asking me, Mom, what about the roast beef and the pea soup? I had no idea what she was talking about, and she kept asking me, not using different words, but talking louder, like volume would help. Finally she said, "Anyone can roast beef, but nobody can pea soup."

Pause...

Then I started to laugh... Oh my.. where did she hear this one? She proudly announced, "On iCarly!"

Thank you Nickelodeon, well played.

After I finished laughing, I did explain how to set the joke up better, by asking, "what's the difference between roast beef and pea soup?" So tonight she tried that out on my sister and her family.

It's a proud mama I am today... (shaking head and laughing)

Cleared and ready for takeoff, or should that be take-out

2010-08-02T20:09:00.000-04:00

Last week I had my pre-operative appointments at the Clinic... came through just fine, though I didn't think there would be much of a problem. My blood pressure was a touch on the high side, just the upper number, which the internist I saw commented on but wasn't concerned about. I met with Dr. Drake's nurse practitioner, a super-nice woman named Barb. She went over what I need to do before surgery, which is the dreaded bowel prep (aka clean out your intestinal tract quickly with the use of chemicals). Now I know why I scheduled PTO for the day before surgery... I had somehow had the crazy idea of doing something fun on Thursday! Silly, silly mama. We talked about what he'll be removing, and I got some clarification from our conversation.

The right ovary - gone. It's in the middle of this mess so it's out. The mesentery mass - gone, unless it's too close to a major blood vessel, as Dr. Drake had explained. Left adnexal mass - gone. I've been thinking a lot about the left ovary, which has the mass close to it but not on it. The idea of leaving the ovary in has been bothering me, given that while small, the chance that we are looking at ovarian cancer is there. So I asked Barb if he shouldn't just take it out. She explained that they will look at a sample of the mass right away while I'm in surgery so they will know if it's ovarian cancer or not... and so if not, and he can spare the left ovary, he will. That was reassuring news; both in terms of my ovary and in not having to wait so long for answers.

If Dr. Drake is able to do the whole procedure with laparoscope, then I'll stay over one night in the hospital and go home Saturday. That is my big hope, so I'm sending positive vibes to my mass, telling it to get the hell away from my intestines! As many of you know, staying in the hospital is torture to me. I know it's no picnic for anyone, but I am just so uncomfortable there, and can't stand not being at home where I can relax. Wah wah wah... I feel truly grateful that in comparison to many other people, I have it quite easy... however, it's my blog so I'll whine if I feel like it.

Now I will tell a shameful tale about myself. On Thursday I felt pretty sleepy, going in to the hospital for my tests. Friday I was also really sleepy in the morning. A friend drove me to work Friday because she had meetings in my building and Jim and the girls were picking me up to meet some folks for dinner. I tried to stay awake and perky during the commute, but my friend was on to me... in a nice way. Both days coffee and activity at work got me going after a bit. Then on Saturday I just wanted to sleep and sleep again. Jim asked me if I'd taken my morning meds, one of which is a stimulant for ADD. I told Jim that I had, but maybe not having any coffee was really knocking me out. In the early afternoon I finally roused myself enough to do some chores. In the kitchen I stopped to refill my morning pill minder. Each day along with the ADD med, I take an anti-depressant and blood pressure med. A couple of my meds look different lately because one recently went generic, and the other is a generic from a different company than it used to be from. So, I'm still getting used to how my pills look. As I refilled the daily boxes, I came to a horrible realization... for the past few days, instead of my hypertension pill, I was instead taking a Xanax. NO WONDER I WAS ASLEEP!!! And now it made sense that my blood pressure reading on Thursday was a little high. I am now back on the right pills and the Xanax is tucked away in keeping with its 'as needed' status. Another bout of spaciness... chemo brain, overwhlemed brain, aged brain, combination? Who knows.

Heavy

2010-07-19T21:52:00.000-04:00

This evening Rebecca came up to my computer because I had promised her she could play games on Facebook. She began hugging and kissing me, professing her love, and said, in a happy, light-hearted way, "I hope you never die, and I hope I never die." I laughed, and told her that we'll all die someday, but hopefully not for a long, long time. I was reading email, specifically from my kidney-onc list. She saw what I was reading, and asked me the following:

"Do you like having cancer?"

It was an honest question, asked without any agenda or motive, just simple curiosity. I told her no, I don't like having cancer. I wish I didn't have it, but since I can't "un-have" it, I just deal with it.

Then she asked me,

"Is there anything good about having cancer for you?"

It was on the tip of my tongue to say no, nothing. Then I glanced over at my monitor, where my email program sat open, filled with messages from my kidney-onc friends. I told Rebecca that she had just asked a very good question, and that I wanted to say no, there's nothing good about having cancer. But actually, I have met a lot of really nice, really wonderful people because of my cancer. These people are willing to share information with each other to help all of us. And I am glad I've met them, so that is something good.

I asked her if she is scared about my having cancer. She said, "Nope!" which was an excellent answer. I told her that I was glad to hear that. As she knows, I reminder her, I get treatments when they find something, then I just get to live my life when I don't need treatment. It's just how it is right now, I told her, and she seemed to accept that. I hope that when we tell her and her sister that I'm going into the hospital, that she can be this calm about it. She is maturing, for sure, though.

At least I'm doing better than THAT guy

2010-07-17T12:33:00.000-04:00

On weekday mornings, I generally wake first and take a shower before waking Jim and the girls. The other morning, I stumbled into the bathroom and started the shower. As it warmed up, I idly took a look into the toilet bowl to see if it needed cleaning. (Rebecca is learning how to clean toilets among other chores to earn rewards.)

Imagine my surprise when what I saw in the bowl was one small dead mouse floating on the surface of the water.

Yes, he was dead, and yes, I was still way creeped out anyhow. I ran back up to our bedroom and woke Jim. He stirred a little until I said "I have a problem and I need your help." THAT sat him up quickly. He looked at the mouse and laughed. We decided to get the girls up to see the spectacle before getting rid of it. They both have that kid-fascination with dead things and animal things, so we knew they wouldn't be too grossed out. Carly wanted to know if he was still alive, and we explained that he wasn't. "Why are his eyes open then?" Fair question.

Jim gave our rodent buddy a burial at sea and we all moved along with our day. Not a typical morning at our house.

Back to life

2010-07-13T21:12:00.002-04:00

Thanks to all for the nice comments here and on my Facebook page; I really appreciate them.

While I wait again for the next chapter in this story, life goes on. Work is work, home is home, never enough time to get done what I want or need to do. As I was afraid, the girls' enthusiasm for earning marbles by doing chores has totally waned. Tonight Rebecca sat with me at my computer bugging me to let her play games on some site the kids at day camp play on in the late afternoon. I told her that she should go downstairs and unload the dishwasher to earn a marble while I finished what I was doing online. She doesn't have to put away anything she can't reach; all of that stuff goes on top of the stove. No dice... she didn't want to go downstairs. I just had a talk with both of them and reminded them that if they want special items they have to work on some chores, and that if they aren't going to do any chores for marbles, then we'll start making a list of chores for them to do just because! I also think we have too much TV time going on; it's time to limit that and then the TV goes off. Because when they get into the mode Jim and I call "eyeballs glued to the TV" there's no talking to them. I've been assured by other parents that my kids are not the only children in the world who have this affliction, but it's still pretty sad to see.

I've been thinking of up-sides to my upcoming surgery, to cheer myself up. Here is a list:

- I get to stay home and take naps

- When I'm not napping, I can go onto Facebook and hone my mad Bejeweled Blitz skillz

- If they take out my ovaries, no more pesky periods! Ironically, I just bought a big box of tampons at Target the other day; if that doesn't seal my fate, I'm not sure what will.

- Maybe if they have to resect some of my small intestines, it will have the effect like a weight loss surgery... without all the co-pays. Okay, that actually wouldn't be a good thing, but shhhh... just looking at the sunny side of the street here

- If they have to do an open procedure, and I get to be a guest of the fabulous Cleveland Clinic, Jim can bring me asiago bagels from Au Bon Pain in the hospital

- Get well cards! Need I say more?

- I can feel like I'm REALLY getting my money's worth out of my health insurance... as if I didn't already get that satisfaction from how much they spent on my IL-2

Is there anything else I'm forgetting?

Speaking of sensitive subjects

2010-07-12T22:05:00.000-04:00

This weekend I learned a lesson. As a person with stage IV cancer and a young family, watching a movie that includes the death of a parent is not wise. I watched a movie that has been on my Netflix queue for a while, a movie that will remain nameless so as not to provide any spoilers. However, in the film, the main character dies, leaving a spouse and a young child behind. The movie was based on a book that I read a few years ago, pre-stage IV-ness, when these situations would make me sad, but not overwhelm me. That is what the film did... I was overcome with emotion while watching it, thinking that this might be me before too long. It's certainly a fear that lives in a piece of my brain all the time, but a fear that I try to calm whenever I can so that I can remain positive and focused on if not defeating this cancer, at least beating it back so that I can enjoy life. I decided that for the time being, I will not seek out films that I know have this kind of subject matter... there is plenty else out there to watch. I do enjoy dramas but I think that laughter would probably be my best medicine right now.

Two years to the day

2010-07-12T21:58:00.000-04:00

I have a date... for surgery. Today Jim and I met with Dr. Drake, who will be performing the surgery on August 6. That happens to be two years exactly from the date I had my first resection of a metastasis,or in other words, had kidney cancer removed from another part of my body.

He plans to do the surgery via laparoscope if possible. I will most certainly have the right ovary removed, as that is the side where the largest mass is. The mass might be involved with some loops of my small intestine. If that is the case, he may have to "open me up" to remove some of the small bowel and repair it. He will also get the mass by the left ovary. I have a cyst on the left ovary and it's possible he might remove the left ovary as well. If that happens, I officially will be in menopause... weird thought. Lastly, there is an additional mass in the mesentery, that Dr. Olencki had mentioned in Columbus, but nobody in Cleveland seemed to see until now. Dr. Drake will try to remove it, as long as it's not attached to a major blood vessel or anything. If that is the case, he'll take a sample for pathology.

If everything goes well and I don't need to be opened up, I could go home that day. On the other hand, if it becomes a more invasive, major procedure, I could be in the hospital for 3-5 days. Oh joy; how I so love being an inpatient. But, I do what I have to do... and the more he can get out, the better. I'm not thrilled about possibly losing both ovaries, though there are upsides to that as well as downsides, and being alive and well while hormonally challenged beats many alternatives.

We will not be telling the girls about my surgery until that week, so that they don't freak out and obsess for weeks about Mommy being gone. It's been a great several months and we've gotten used to being together again. Carly is showing some signs of her difficulty with my hospitalizations, more so than she did when they were going on. She is more lovey-dovey with me, telling me often that she loves me, and wanting to cuddle more than she used to. Rebecca still likes to come up for a hug at random times, but has been overall more accepting of everything as she has matured. Carly continues to talk to us about death. Over the weekend she has mentioned that she thinks Jim and I will die before she grows up. I asked her if she was afraid that was going to happen, and she said she was. We talked again about the idea of trying to be as healthy as we can so that we don't die for a long time, and she accepted that. I might just be extra sensitive to this topic, while for her, asking these questions and considering these possibilities may just be a part of her growing up process.

Beat off my feet

2010-07-10T21:25:00.000-04:00

Whew... it is nice to be off my feet. I spent the day on household chores like laundry, picking up, a couple of errands. There's one load left in the dryer, after which all clothes not currently being worn, or hidden away somewhere, will be washed. I don't mind laundry, except my energy peters out toward the end with the "putting away" phase. Not sure why that is, and it is annoying to have a basket full of clean clothes blocking my path in the bedroom. Apparently it's not annoying enough for me to put everything away most of the time, though I am working on finishing what I start. (Now there is a theme I could take off and run with, but not tonight.) The girls were very helpful earlier today, and so the first few loads are all hung, folded and put where they belong. We're trying a system of earning marbles for various chores, with the goal of getting some special treat (toy, outing or some such) once the marble jar is full. Unfortunately their desire for marbles didn't remain high all day, but hopefully they will pick up a little steam. I think I need a marble jar, now that I think about it. Jim will have to help me decide on what would qualify for how many marbles!

My plan for today had been to work on really clearing out and cleaning up our living room. I also wanted to work on washing our deck with the power washer Jim bought a while back. Didn't get to either of those things but I am still satisfied that I didn't waste my day. Tomorrow we have an early birthday party for my niece, then grandma wants us to go to a local art show with her. I am seriously considering having her take the girls and I would stay home to work. Not only do we have the two projects above, but we decided this evening to take the rest of the d@mn mulch pile and put it under the girls' playground set. That should go fairly quickly, but still needs time. We'll see though; I do enjoy walking around an art show. I think the weather is supposed to hold for most of the week, so I could defer the outside stuff until a weekday evening.

There is a part of me that really wants to get all our home projects done, so that if at some point I am not feeling well for an extended period of time (like if I have drug therapy) then I will be able to rest comfortably and not stress about my house. It also occurs to me that if the worst happens, I don't want to leave Jim with a cluttered home to deal with on top of everything else. But really, I hope and plan to keep living life like I am now, and want to have a nice, comfortable space in which to do that. Rebecca has commented a few times that we should try to get on the program Clean House. Uh, not... we're not as bad as some/most of those folks, but I would die of mortification to have all my crap displayed on national television! I certainly don't plan on applying to be on the program. A while back she and I were watching The Biggest Loser, and she was aghast at the thought that if I were to apply to be on that show, and be accepted, that I would be away from her for more than 2 months. So, she kept telling me I couldn't go on that show. It was never something I really considered, as I kinda need to keep my job and so forth, but I will admit, the idea of getting to just focus on myself for an extended period of time is very appealing!

Calmer

2010-07-09T22:08:00.000-04:00

This breathing stuff helps... it really does. Whenever I start to feel nervous or fearful about what may lie ahead with my health, I try to remember to focus on my breathing. It's keeping me calmer and saner than I might otherwise be. Imagine what some actual meditation might do for me.

Despite the stress of the day on Wednesday, it was also a wonderful day. We have a new nephew, born to Jim's brother and his wife. He's the second boy of eight grandchildren in Jim's family. The first grandchild was a boy and then we've added six girls to the clan over the last seven years. The new parents didn't find out the baby's gender before he was born, so it was a fun surprise for everyone. Yesterday I stopped at the hospital after work to visit with them. He is so cute and tiny, with a full head of hair. When I held him I realized that I've forgotten just how small a newborn is. For a while after Carly was born, seeing a baby like this would have given me a dose of baby lust for a while. We knew that we were finished with our family after Carly, but as she got older and bigger, I longed to have another baby in the house, someone tiny to hold and to cuddle. It took a while, but finally I stopped feeling so nostalgic around babies, and now I just enjoy them when I'm with them. Seeing photos of the girls at younger ages still makes me wistful at times, but I'm focused more on enjoying them now and on looking forward to more adventures with them as they continue to grow.

Facing fear and anger

2010-07-07T22:41:00.000-04:00

Today I went to see the therapist who I have seen at various times over the past couple of years. I hadn't seen her since last fall maybe... but realized recently that it was time to get some perspective, to help me get back to mindfulness.

What brought me to wanting to reconnect with her is my eating habits of late. One good thing about being sick from my IL-2 treatments was the weight loss I achieved during that time. Of course it isn't a diet I recommend, and it wasn't lasting, once I got back to feeling more like "myself". Then in late March I was given a weight loss goal to meet by October 1 in order to lock in a lower premium on my family's health insurance for next year. Unfortunately, they based the goal on the last recorded weight in my medical record in 2009, which was about 10lb lower than when I was in March. Since then I've gained 10 more, and it was just the other day that I realized that I've been unconsciously sabotaging myself. It's why I don't join any organized weight loss programs; I've been there before and I always feel pressure, which leads to over eating, and then feeling even more hopeless. I did join our "shape up and go" program at work, but made sure not to commit to weight loss as one of my goals, instead focusing on positive things I can do. That is working out well; I feel good and healthy and while I am still more sedentary than I would like to be, am definitely getting more exercise than I used to. But still I find myself eating by myself, eating things that I shouldn't (usually salty stuff, a big no-no for a hypertensive one-kidney wonder) and more than I should. At one point I was in the car, desperate to stop for some kind of snack, when I heard my therapist from a previous session... asking me what would happen if I didn't eat during that commute, what would I feel? what would happen? Good questions, those, and when I was more mindful, I was able to use those questions to stop myself. But when I heard them in my mind's ear recently, I said, eh, screw it.

These were the things I was planning to discuss this afternoon. But as therapy goes, we ended up not talking much about my eating at all. Instead we talked about how I am doing, and how my family is doing, at this point in my cancer journey. I got teary talking about it, and finally R, my therapist, pointed out to me that I am keeping track of Jim, and of the girls, but not myself. She asked me if I am angry at myself about my situation. At first I didn't think I was... I don't feel like I did anything in particular to bring about cancer, but I am angry that the cancer could rob me of my life with my family, which is so precious to me. R told me straight out that I need to get off the "anger train" because all it is doing is feeding my fear. How true that is... and how draining the anger can be, even when I didn't know that was exactly what I was feeling. We talked some about meditation, which is something I am becoming increasingly interested in, and happens to be something R teaches. I want and need to let the anger and fear go, and replace them with kindness and grace. This is important not only for my personal state of mind, but for my immune system. I've been reading more and more about the importance of building up one's immune system, whether you are currently sick or not, and I know that I want to be kinder to myself, rather than as critical as I tend to be. A life filled with fear is not what I want for myself.

I got an opportunity to face my fear and anger shortly after my appointment. Back at my office, I got a call from my gynecologist, who had received the results of the pelvic MRI I had last week, in preparation for my consult with the gyn-oncologist next week. I don't have the written results yet, and probably won't until tomorrow, but three masses were noted. The first and largest is at my right ovary, and is the one we've been watching. It was unclear from the MRI write-up whether the mass is involved with the ovary or just next to it, but there also may be growth into loops of the small bowel. A second mass was noted in the mesentery; this was something that Dr. Attaran had read to me last week from the CT scans in May, but we didn't see any mention of it in prior scans. As she read the word "mesentery" I remembered Dr. Olencki in Columbus mentioning this mass last fall. OK, so that wasn't really new either. But there was also a small mass noted on the left side of my pelvis too. Great... super news. Dr. A. said that it would be up to Dr. Drake and me as to how we proceed since there is not just the one mass to deal with. I don't know what to think... and am consciously trying not to think about anything in particular. Shortly after I got this call, I had to attend a meeting, one in which I really didn't have anything to contribute. Because I could be silent, my mind was able to wander to bad places. Then I recalled R telling me today to keep noticing my breathing, so I did that, and kept taking deep breaths. Before too long the panicky feeling dissolved and I was able to focus on my meeting a bit more.

How lucky was I to have that experience so soon after my therapy appointment????

Question

2010-07-06T21:21:00.002-04:00

What, if anything, does it mean when your four-year-old walks around, singing to herself,

"Bow-chicka-wow-wow..."

Granted, she's not singing it in THAT way, but where the heck did she get it?????

Yikes!

2010-07-06T10:52:00.000-04:00

I lost a day in the long weekend at home. It was nice to have an extra day without work, commuting, etc. even though it was incredibly warm. Very hot weather is not my favorite; I tend to hibernate indoors when it gets too warm. My lack of heat tolerance seems to have increased since I went through two full hot summers while pregnant... the bad luck of having fall due dates. We did end up going to see Toy Story 3, and luckily I had bought our tickets online on Sunday, because the show was sold out when we got there. Since we are never early for anything these days, while we did get to the theater before the show started, we were relegated to sitting in the second row. It wasn't as bothersome as I had anticipated, though. The girls were delighted by the movie and Jim and I really enjoyed it as well. I did cry at the end, as many other parents have mentioned doing... whenever I think ahead to when the girls will leave for college it makes me really sad. It's a natural part of life, having your children grow up and move out on their own, but it is still sad. I remember how hard it was for me during my early days of college, and that feeling makes me more apprehensive for my girls, even though college is years away... and who knows, they might just go to school locally and live at home... and I might just want to kick them out by then... it could happen! Rebecca has already told me that she doesn't want to go away for college. This is her separation anxiety talking, but is still king of sweet to hear. These are the moments I plan to cherish when she is a teenager and seems to hate me.

Rebecca had a softball game last night, so we all got to brave the heat to see her play. Her grandparents came to see her play, so we sat in a row under the shade of a big tree while the girls played. It's almost the end of their season and we can really see their improved skills. Rebecca had two good hits and made a nice play at first base. After the game, Grandpa invited us all out for ice cream. I didn't think we would be able to go at first because as we left the field, Rebecca started complaining that she felt sick to her stomach. I decided we should at least drive to the ice cream parlor and see how she felt then, after some time in the air-conditioned car. She started to perk up in the parlor, and when she announced that she wanted cookie-dough ice cream I knew she was feeling better. Grandma noted that she had drunk the entire juice box she received at the end of the game in record time, so she was probably feeling the effects of gulping down a lot of cold, sweet liquid when she was pretty hot. I was relieved that she felt better because when she first started complaining about feeling poorly, I was a bit concerned that maybe she had heat stroke or something of that nature.

For once I went to bed right at 10:00, which is something I always intend to do, but never actually follow through on. It was strange though... I had vivid dreams all night and so every hour or two, I woke up. I was able to go right back to sleep, but why my sleep was so broken is a mystery to me. My dreams didn't have any particular theme that I could discern, so I guess they were just indicative of the tangled mess that is my brain these days... too much to think about.

Holiday... eh...

2010-07-04T20:17:00.000-04:00

Feeling very low-key today. When I woke up this morning, my legs, feet and especially my ankles, were pretty sore from yesterday's labor. Moving around helped and I am not feeling like a cripple anymore.

We have done very little today, lots of laying around watching tv or reading. The girls went outside to run through the sprinkler for a little while, and we decided to go to see Toy Story 3 as a family. I checked to see where it was playing and we took off for the theater. Unfortunately when we arrived at the box office, the attendant told us there was a problem with the projector, and they weren't sure when it would be fixed. He suggested we go to another theater in their chain, but that place is 20min away, and includes a freeway trip, so we nixed that. The other theater near us showing TS3 is in a shopping center where they were having a bunch of July 4th festivities, so that would be a zoo. So plan B became "let's go to the movie tomorrow, and just go get dinner now".

The girls and I are going to leave in a bit to see our local fireworks. I have no interest in trying to go to the park where they are actually putting on the display, as it will be extremely crowded... we would have to be there already if we wanted to be at the park, I'm sure. Instead we'll do what we did two years ago; we'll camp out in the parking lot of a close business and watch them from a distance. We had a nice time when we did that, and were able to get home without any traffic nightmares. Last year the girls and I went with family to a summer orchestra concert where fireworks end the show. It's a really nice display but Carly was terrified. It wasn't the noise that bothered her, but the optical illusion that the colors were going to fall onto and burn us. She has agreed to go see the fireworks tonight, but isn't convinced that we'll be far enough away for safety. I've had to promise to hold her hand, and if she gets too scared, to go sit in the car with her. Once we're there she will see that we really won't be that close. When I was a little girl, we sometimes viewed the Independence Day fireworks from the side of a road, at the top of a big hill, where we could see across the city, and therefore view more than one community's display. Other years we sat on bleachers at various local high schools to catch a show, depending on who was having them.

For myself, I don't really care if I see fireworks or not. I enjoy them, but if I missed them, it wouldn't bother me at all. Jim hates the noise, so much so that he refuses to go to any event where he knows fireworks will be included. Pre kids, it was our tradition to go to a movie during the evening on the 4th. But, the girls want to go, so Mommy is the one to take them... and that is okay with me.

Weekend wars

2010-07-03T21:32:00.000-04:00

I wish I enjoyed working in the yard. I do enjoy nice landscaping and I love flowers. But the work that goes into creating and maintaining the outdoors has never appealed to me.

Of course, I'm particularly biased today, because I spent a long time this evening trying to conquer Mount Mulch in my driveway. Two years ago, we had landscapers spruce up our yard, and last year we didn't put down fresh mulch. I wanted to order the mulch from a local company, because we need quite a bit, and I know it's cheaper overall than buying bags of mulch. Unfortunately, I had no clue how much we needed. So I volunteered Rebecca to go outside with me and a tape measure, so that we could measure the area of each bed or spot. To that, I added a strip on the north side of our house. For some reason the previous owners never did anything on that side of the house, and more mysteriously, it never occurred to me to have the landscapers put a bed in on that side in 2008. I added the square footage for a bed there to my total, and the girls and I went to the earth company to place our order on Saturday of Memorial Day weekend.

The woman at the counter didn't know how much we would need either, but did some calculations on her adding machine and we agreed on an amount. They were so busy with other deliveries that they couldn't bring the mulch until Memorial Day itself. It was a huge mountain, sitting nicely on the tarp Jim had laid on the driveway. I hoped to get it knocked out that day, but... he has a cart that attaches to the back of the tractor that we use as a wheelbarrow. He had to fix something with the wheels of this cart, and so we did not get any mulching done. The next weekend we went outside and managed to cover the three front yard beds before the heat drove us indoors. Since then some family members have come over to help out, and got the south side of the house completed. All along the south we have burning bushes that I just love. The previous owners had rose bushes all along that side. I love roses but definitely didn't want to have to deal with them, so one fall Jim and his cousin pulled them out and planted the burning bushes, which have flourished.

We still had to put mulch down around the deck and in the back bed. It seemed like either weather, softball or other scheduling conflicts were always in the way. Today we decided that once the sun had passed overhead, Jim and I would see what we could get done. Unfortunately, he got caught up in applying for a couple of jobs online, so I went out by myself to see what I could get accomplished. Mind you, I don't drive the tractor, never have, so it was manual labor all the way. I shoveled mulch into a wheeled garbage can and pulled it to the back yard, over and over. I learned quickly that working with a full can of mulch is very difficult, and so filling it no more than 2/3 full was much more productive. I kept plugging along, and eventually got all of the back yard done. Then I surveyed the remaining mountain of mulch in the driveway. There is still a LOT there... damn. Apparently I ordered WAY too much. Before I petered out for the evening, I dragged mulch across the front yard into one of the previously mulched beds, because I decided that we didn't put enough down in the front beds initially. I think if I re-mulch the other front bed, we'll be in better shape, and then we can store the remaining stuff in the back yard until we get the north side bed built.

My pedometer has passed 10,000 steps today, but I fear that tomorrow I will feel all of those shovel-fuls of mulch in my arms and shoulders. The heat is supposed to be intense here the next couple of days, so I won't feel too guilty about not working outside. I'm actually hoping we can go see Toy Story 3 as a family.

But, this work has to get done and since I was the one with the bright idea to mulch, I feel that I need to make sure I am doing the work, as much as possible. Time for physical work is short for me, since after surgery I will likely be on restrictions of some kind. Next I need to turn my focus to my house, which is in abysmal shape inside. If anyone came by for a visit right now, I would probably die a thousand deaths. So we need to at least get the public areas in order so that we can have folks in at some point. Good luck with that, as they say.

Maturing... questions are coming...

2010-07-02T16:45:00.000-04:00

Jim and I have always been open with the girls about bodies, bodily functions, health and the like. We've never used euphemisms but instead used the real names for body parts. We have matter-of-factly answered the girls' questions as they've asked them. They both know that babies come from mom's body; their only confusion being that I gave birth to both of them via Caesarian section, though I have pointed out that most moms don't give birth that way. Recently Carly, who has repeatedly told me that she never wants to have a baby, asked me the following: *if* she did have a baby, would they have to cut her open like they did to Mommy? I explained that they probably would not, that instead the mom pushes the baby out. Out of where? Her vagina, I answered. GROSS! exclaimed Miss Carly. She is starting to wonder how women have babies, in so far as how they have them when they want them, and don't have them when they don't want them... but she doesn't ask further questions so I've let it go until she does.

Both girls have been told all their lives by various people that one of them looks just like me, and one looks just like Jim; which child favors which parent depends on the person offering the opinion. Last night at supper Rebecca asked me why everyone says she and Carly look "so much alike", I answered "because you DO look alike! More so than other siblings you know" and gave some examples of families we know in which the siblings share very little resemblence. Rebecca sees the differences between herself and her sister more than their similarities, so it's hard for her to see how much they do favor one another.

Later she was looking at a Lady and the Tramp Golden Book and asked me a question. On the last page of the story, Lady and Tramp are sitting with three of their puppies. Two of the puppies are miniature sized Ladys, and one is a dead ringer for Tramp. Rebecca wanted to know why one of the puppies looked like Tramp. Because Tramp is his dad, I answered... waiting to see what she would ask next. She considered this, and then said, "OK, but Lady gave birth to him, right?". Yes, I responded. She looked thoughtfully at the page, then shrugged, saying "that's odd..." and went on to something else.

So, we may be having a more in depth talk before too long. Maybe it's time for me to invest in a book or two to help out. I will note here that I have had more in-depth conversations of this type with my kids at this point, than I had with my mom during my entire lifetime. My mom was not open about these kind of subjects, not at all. She bought a book for us to read, and left it on a shelf on her nightstand for a long time before actually presenting it to me. Being a nosy kid, I had already read it when she wasn't home... having a lot of trouble understanding the mechanics of sex given how it was described in the book. When one of my friends got her first period, my mom gave me some supplies for when it would happen to me; lucikly pads with adhesive backing had just come out, because I was aware of her wearing the elastic pad belt and did not want to deal with that. She never showed me or discussed tampons; in fact when my sister was a teenager my mom refused to buy them for her, saying she was "too young" to use them. Anyhow, after presenting me with the pads, my mom handed me the book and told me to read it. And that was it for our discussion of sex and babies. I'm glad that things are more open between me and my girls.

New month, new promise

2010-07-01T22:33:00.000-04:00

So I joined NaBloPoMo. I like the idea of pledging to post daily, to get me to actually DO it rather than make excuses that I'm too tired, too scattered, too whatever. This isn't the first time I have thought about joining NaBloPoMo but is the first time I have remembered it at the actual beginning of a calendar month. They don't forbid bloggers from enrolling mid-month, but I'm just compulsive enough to have to do it the "right" way. So here goes, the first of hopefully at least 31 days in a row of posts.

Let's start with my latest health update, since that's one of my recurring themes here and elsewhere. On Monday I had a consult with my gynecologist about the ovarian mass that isn't shrinking. She went over my recent history with me, beginning with an ultrasound she performed in the spring of 2009 for other reasons, but during which, nothing unusual in the area of the ovary was detected. In April I had a clean CT scan, but by July this thing had appeared, along with the 'spots' in my liver. Those spots seem to have responded to the IL-2 while my ovarian friend has actually grown, and apparently has picked up a new friend, according to the last CT, which noted a second lesion on the uterus. ??? She and I discussed what plan of action makes most sense at this point. A biopsy seems like a waste of time, since whatever is in there, needs to come out; she and I agreed about that. Besides, a biopsy can have misleading results, whereas they can do better pathology on the whole mass. Dr. Rini is convinced that ths mass is not RCC since it has not responded to IL-2 in the same way as the other lesions. If he's right, then what is it? We don't know right now and none of my medical professionals has offered an opinion, not that I have asked. I have already given some thought to the fact that it could be ovarian cancer, or another cancer; unfair though it seems, it is possible for people to have multiple cancers, not only within their lifetime but sometimes at the same time.

After we talked, the gyn took the information and hunted down a gyn-oncologist on the floor, to get his opinion. He wanted to know if I was willing to have surgery, rather than a biopsy... great minds think alike, I guess. She told him I was, and he asked for me to set up an appointment for a consult at his next available clinic day, which is July 12. He told my gyn that he believes these masses ARE RCC, because he has seen RCC metastasize to this area of the body before. So now in my head I picture these two doctors in a battle of the Pathologies... who will be the victor? Of course in my fantasy, the masses turn out to be benign, though in reality I know that's not really likely.

So again I wait... get a little bit of information, and wait for the next step. I am so not looking forward to another abdominal surgery, even though he does these procedures laparascopically. I assume that I will have to stay at least one night in the hospital, which I dread, but I know it's necessary so I will get through it as I always have. The girls do not know about this surgery yet; we are not going to tell them until we know when it will be, and even then, I think we will wait to tell them until close to the actual day, so that they don't have to feel the all too familiar upset about Mommy for any longer than necessary.

Lately Carly has death on her mind as a topic. It's probably just a stage of her development, but the timing feels weird to me. The other day she asked me if Jim and I would be dead before she is big. I told her that I hope not, that I plan to be here for a while yet. That answer seemed to satisfy her. Then last night after her bath, she asked me if she will die some day. I explained that we all will die some day; she asked if she could live forever, and I very lightly told her no. But, I said, we want to life a long and healthy life, so that's why we try to eat healthy foods, and get exercise... like a walk around the block I was able to persuade everyone to take that evening. I told her that our doctors try to fix us up if we have anything wrong. How do they know something is wrong? - she wanted to know. I said, well, when we don't feel well, they figure out why. Like when Mommy had blood in her pee, and the doctor figured out that it was because of Mommy's kidney and took it out. Again, Carly accepted that answer as what she needed to hear, and changed the subject.

It's important to me to not make any promises to the girls, to tell them that I promise not to die. If something does happen to me while they are young, I don't want them to remember some promise and feel the ultimate betrayal by their mommy. On the other hand, I try to keep conversations about my cancer minimal and light; they both know I have cancer, but both see me living life fully and seem to believe that cancer is something families can live with.

What a shitty lesson for little girls to have to learn, eh?

My friend Deb

2010-06-26T15:01:00.000-04:00

In early December, my long time friend Deb lost her battle with breast cancer. She endured a double mastectomy, chemotherapy, gamma knife surgery and two open brain surgeries. She died right after I came home from my first week of round 2 of IL-2. Jim and I attended her funeral, and I wrote a long rememberance of her life and our relationship, that unfortunately was eaten by the internet before I could post it.

We met in 1990 when Deb came to work for Cleveland Clinic and I was assigned to her workgroup. She was a wonderful boss, very supportive and sharing. I had just been moved to the benefits department, which terrified me... I didn't know anything about employee benefits! I learned though, and we went through many changes together with our team... a new computer system, benefit changes, a less-than-successful attempt at telephone enrollment for annual changes, etc. In 1996 Deb moved on to another company and I was sad that I would not be working for her any more, but we remained friends. I got to hear stories of her kids, as they grew up from the small kids I met when we first worked together; she shared in my happiness when I met and fell in love with Jim.

A couple of years later, she returned to the Clinic, to a different part of HR, and eventually moved back to the building we had worked in together.Even though we didn't work directly together, we were both involved in some of the same projects, and we made time to have lunch together more than occasionally.

Our respective cancers were discovered within a year of each other, which we used as a bonding experience. Even though we had different cancers, the feelings we had were similar and it was nice to be able to talk to someone who understood those feelings, someone who didn't try to make me feel like I should just "think positive" and "don't dwell on the bad things". Not that Deb wasn't a positive thinker - she inspired so many people with her attitude. It was a life outlook that she had prior to her illness; one in which she saw the good in people. She was a very hard worker and was always thinking about what would be in the best interest of the Clinic. If I made a cynical comment about something, she would laugh, but she didn't often let the politics of corporate life get her down. She was realistic about those politics but didn't let them harden her.

It was the same way with her illness. She wanted to fight as hard as she could to live; she loved life and wanted to continue it for a long time. But she knew that it was possible that she might not be able to kill the cancer. We had a talk early last year, while she was still working, about death. She had gone to the funeral of an elderly relative. The priest, in his eulogy, spoke about how we all feel that it's good to live, but that it's also good to be in heaven with God. Deb really took that to heart. I think she felt comforted by that thought; on the other hand, she was sad about leaving her family behind and about the heartache they would endure. I totally understood what she was saying, as my big worry is dying young and breaking the hearts of my family, most especially my girls. It's easy to say that we, the patient, shouldn't worry about that, because our loved ones will survive and move on. It's not so easy to not feel guilty or sad about being the cause of their sadness, however.

I always had hope for Deb, always thought that if anyone could beat the odds, it would be her. Maybe I was in denial, I don't know. But it didn't seem right that someone who knew so much about her disease, who fought so hard and was willing to try anything to get rid of it, would be unsuccessful. I miss her still... having good talks, listening to her vent about some work or life issue, hearing her say "hey, lady!" upon seeing me in the morning. She gave me good advice that I continue to use; every so often if I struggle with wording an email or some such, I will wonder "what would Deb say" and know what to do. She was always so concerned about me; checking in to see how I was doing when I was recuperating from surgeries, etc. When we went to Columbus last summer to meet Dr. Olencki's team to see if I qualified for IL-2, Deb called me that morning to wish me well and let me know she was thinking of me and praying for me. Meanwhile she was at home on long-term disability, losing her eyesight because of her brain tumor. But she worried about me and took the time to let me know. Our last conversation was just before Thanksgiving; we only talked on the phone for a few minutes because that was all she could handle, but while she had difficulty with speaking, I knew that Deb was still there, just inside her head, having trouble using the body that was being taken away from her.

Deb supported Susan G Komen for the Cure, with her time and efforts. In 2007 we both signed up for our building's team for Cleveland's Race for the Cure. I decided to bring the girls downtown with me, and recruited my friend Sherry to come with us. It was a cold morning, and I forgot my cell phone, but managed to talk to Deb when we got there, as we were planning to meet up for our team photo. Nobody else from our team made it there early enough to be in the team photo:

The girls were very young; Rebecca was 4 1/2 and Carly was not quite 2. Sherry and Deb's husband Jeff are the other adults in the photo. Deb was rocking the Energizer bunny ears!

Jeff has taken up the mantle of raising funds for Komen in Deb's place. She was a top fundraiser for our area, and while Jeff doesn't feel he can do as well, he'd like to try, in her name. You can click here to support him in raising funds for Komen. I am hoping to walk the 5K but will settle for walking the mile in her memory.

Grumble

2010-06-23T14:31:00.001-04:00

Jim took the girls to Rebecca's softball game last night and I stayed home for some "me" time. Usually I go to their activities unless I have a schedule conflict, or when I was in treatment and wasn't feeling well enough to go. However, I am almost never home alone, and the past several days have been particularly busy, so when Jim suggested I skip the game, I agreed.

Needless to say, I spent part of that time doing dishes and laundry, and going through the mail. I promised myself that if I did a little housework, I would be able to go spend some time reading or web-surfing relatively guilt-free. I was able to do that, but spent more time on chores than I had planned.

To top it off, Rebecca came home holding the game ball, which her coach had awarded her for making two outs in a row at first base. The one game I missed, and I wasn't there to see her great play.

ARGH!

Summer already

2010-06-16T22:37:00.000-04:00

We're getting into summer mode here at silly mama central. Rebecca finished first grade last week and started day camp this week. Both girls like wearing their swimsuits outside, even if they aren't going to be swimming or running through a sprinkler. And both are taking swimming lessons this summer... thank goodness for their daycare/camp, where we can pay for lessons and the camp folks take the kids one morning a week. While I would like to be able to watch their progress, I am glad they can have these additional activities without further disrupting our family schedule. This weekend is the biennial dance recital at the girls' dance studio, so once we get through Sunday we won't have those 3 one-hour blocks of dance time filled for a couple of months. The recital itself will be fun though; Carly will dance for the first time, and Rebecca is in two dances - one ballet, and one jazz. I volunteered to be a "class mom" for Carly's ballet class, so I get to sit with 12 3-5 year olds. Rhw other mom who volunteered had to back out, so I may be flying solo, though I'm not too worried about it. I think the experience of being there is magical enough that the girls will behave pretty well.

Rebecca is playing softball this summer for the first time, so we have games a couple of times a week, always at 6:30. The coach pitches, they don't keep score, nobody strikes out, or is tagged/called out at all. Basically they play 3 innings and each girl gets to bat each inning. They are all learning the fundamentals of softball and they are having fun. This was the first time Rebecca has been interested in playing an organized team sport; when I have asked her in the past about signing up for a sport, she has been unenthusiastic. But now that she is in school, she hears positive things about team sports from her friends, some of whom are also playing softball, and many of whom play soccer. Carly participates in soccer, through another program that is brought into her day care, but Rebecca has never formally played. That will change this fall, because both girls are now registered to play soccer in our local rec league... And thus, my transformation into a mini-van driving soccer mom is complete.

I am actually okay with that, because I want them to enjoy movement and activity. They both do ballet and Rebecca started jazz this year, both are learning to swim. Carly takes soccer and gymnastics at day care and Rebecca does karate. Sounds like a lot of fun, doesn't it? It costs some money, too, but I'm working to stretch the dollars to keep up with these activities for their sake. The only activity I have vetoed recently is a seven-week cheerleading session that is coming to the daycare/camp. It is $70 plus $20 for a shirt. I'm not against cheerleading but thought that was a bit steep, especially right now. Both girls were a little disappointed that they aren't going to participate, but not badly so, which made me feel better about saying no to it.

Jim is still looking for work, and so money is still pretty tight here. He's seen a couple of promising leads in the past week or so, but I have learned not to get too excited about them, since we've been down that road before, more times than we'd like to recall. I'd like to have a garage sale this summer, to get rid of some of the excess stuff that fills our house, and would also like to try to sell a few things on Craigslist, but my security-conscious husband is not in agreement. He is against having people come to the house from CL and doesn't want me meeting them elsewhere. Okay, so let's at least have a garage sale, says Liz. Well... that might be okay, but then there are those people that come around (referred to as gypsies, which always makes me sad, as I like to think of gypsies as magical carnival people) and try to scam you out of your stuff. I learned from Jim's mom that they had experienced someone trying to do this at a garage sale she held when he was a kid. So okay, I can see why he'd be worried... but I am tired of being buried in stuff and just want it OUT. Frankly, if someone scammed me out of some of my garage sale goods, then great... less stuff to have to pack up for charity. So if any of you has any reassuring words for Jim that will help me, please pass them along!

Through it all, I am in personal waiting mode, as usual. I have an appointment at the end of the month with my gynecologist to discuss this ovarian "thing" and see what we're going to do next. Impatient me wants to know, since life is busy, what will I need to plan for... biopsy? Surgery? We don't know.

AAAAHUUUUGGGGHHHH!

Most of the time I'm able to put it out of my head, but when I stop to think about it, I'm not scared so much as annoyed... and tired of not being able to make plans for more than the immediate future, "just in case" I may be undergoing some kind of treatment. But it is the way of my life these days so I just work on accepting it.

In the mean time, I'm trying to work on my body and health. I joined a friendly competition program at work, where we form teams and track things like exercise minutes, pedometer steps, water consumed, etc. over the course of 12 weeks. I've been faithfully wearing my new pedometer every day and was pretty sad at first to see just how sedentary I have been. But wearing it is inspiring me to move more, whether to make that extra trip to get something, or to take the stairs at work more, etc. My office is four floors up from where I park. Last summer I got into walking up all 96 steps to my floor. Now, I stopped at least once on the way up each day, and felt ready to pass out at the top, but I was doing it, up until I got my scan results last July, at which point I gave up... then when I got back to work, I didn't have the stamina at first to tackle it. I'm still not going up all four flights in the morning, but I am trying to do 1-2 flights. In the afternoon I usually take the stairs down all the way to the basement. A friend told me once that she had read that walking down stairs in particular is good for your blood pressure. I haven't found anything online to support that, but it can't be bad for it. Some of my co-workers and I are getting back to taking regular walks during the day as well. It's good for all of us, and nice for me to have company AND peer pressure to keep up with it.

My eating has not been too great however; I've been far too mindless and not mindful enough. I hope to work on that next. However, I am trying to do things that are positive, rather than set myself up to feel deprived or punished. I'm trying to get into a self-love mindset in the hope that more healthy eating patterns will follow. Each day is a new start but some new starts seem to go downhill rapidly... but enough about that, I 'm not going to criticize myself.

My mixed bag of results

2010-05-29T23:47:00.000-04:00

On Wed (5/26) I had CT scans and saw my home oncologist for the first time since my IL-2 experience. I'd had scans in February that showed everything stable after two rounds of two weeks of IL-2, so I was on 'reprieve' for 3 months.

The areas of concern are my liver, where several mets were seen, and my right ovary, by/on which a mass appeared last summer. At that time my oncologist (Brian Rini at Cleveland Clinic) felt that the ovarian lesion was not RCC so he consulted with my GYN. They decided to treat it as if it were RCC; nobody was in favor of biopsying it at that time. I decided to try IL-2, which as of now has brought me stability.

The current scans showed good news on the liver mets; according to Dr. Rini they were the same or maybe a bit smaller than they were last summer. The ovarian mass is, however, larger. He still thinks that while it is certainly possible that it is RCC, that it also could be something else. He didn't have copies of the films from the MRIs I'd had in February, since they were done at OSU Medical Center, and wants to get those to compare.

So, for right now Dr. Rini's plan is 3-fold: 1) he will consult with my IL-2 oncologist, Dr. Olencki at OSU to get his impression of the ovarian mass as of February, 2) he is requesting a copy of the Feb scans for him to review, and 3) he will consult with my GYN to see how she wants to proceed.

At the appointment I was at first disappointed, then started to feel pretty upset and scared. Of course, my mind went to 'bad places' about the ovarian mass. A night of sleep helped me to put things in perspective though. The liver results are Good News. So I am celebrating that. If the ovarian mass is found to be RCC, then we're just on to the next step in treatment. If it is not RCC, hopefully whatever it is, can be removed, and whatever treatment I might need, I can handle... I've handled everything so far just fine, relatively
speaking. :-)

With the holiday weekend here in the US upon us, I don't expect to know much more until the middle of next week, and so I choose to put it into the back of my mind so I can enjoy my 3-day weekend. I will update again when I do know more.

Au revoir adenoids

2010-05-28T10:48:00.000-04:00

We finally got to the day of Rebecca’s adenoid surgery, after two reschedules. She was pretty calm, after having been really afraid for the last few weeks. A couple of talks with her school guidance counselor really helped her out; I am so grateful to the counselor for taking the time to work with her.

We had to report to the surgery center at 11:00 am, with the surgery being scheduled for just after noon. This wasn’t great news for our poor hungry girl, since she wasn’t allowed to eat after midnight. We agreed that I would wake her at about 11pm for a snack, but when I tried to rouse her, she was too deeply asleep. At the surgery center, Rebecca put on a cute gown and pants, put her hair in a cap, and hospital ‘grippy-bottom” socks on. She was delighted by those socks; she kept commenting about how they felt “funny” to walk on. Then we waited… as is normal, things were running a bit behind. At one point the anesthesiologist came in to see her. He showed her a face mask and IV gear and asked her which she would like for her surgery. Surprisingly to him and most of the other staff, Rebecca chose to have an IV in her hand. She didn’t like the plastic smell of the mask, which I can totally understand. The anesthesiologist gave her an injection of lidocaine, then put the IV line in, which fascinated Rebecca once she got used to it.

Finally at about 1PM they were ready to take her to the OR. One of us parents was allowed to go into the OR with Rebecca, to be with her until she fell asleep. I had asked her which of us she wanted to come. She said she couldn’t decide, so she wanted Jim and me to decide. Of course we couldn’t pick either, so we ended up using the old rock-paper-scissors method, with Rebecca playing for Jim. Jim won, so he donned a gown and a hair cap and went with her. When he came back to the waiting room, he told me that she wouldn’t count backwards out loud; instead was counting in her head! Despite her fears, she fell asleep quickly and easily.

Jim and I popped down to the mini-cafeteria in the building for some lunch. We got back upstairs at about 1:30 and literally had just settled into seats to read the paper when the surgeon came to get us. The whole procedure only took about a half hour! The surgeon told us that everything went well, gave us some instructions for Rebecca’s after-care, and took us back to the PACU to see her.

Our poor girl looked just miserable. She was lying on her side in bed, with a bit of blood trickling out of her nose, while a nurse talked closely and gently to her. When we arrived, Rebecca was still feeling dizzy from the anesthesia, and was very disturbed about the blood oozing from her nostrils – it was not a lot of blood and we’d been told to expect it, but she was shocked and unhappy. She told the nurse that she hurt, and the nurse brought over the pain scale to have Rebecca rate her pain level. She pointed to the face that corresponded to a 6 on the 1 to 10 scale, so after consulting with one of the MDs in the room, they put some medication into her IV. She continued to hurt, so they then gave her a dose of oral medication. That seemed to bring her medication up to a therapeutic level. When the nurse asked her a bit later if she felt better, Rebecca said “a little bit”. On the pain scale, she pointed to the face that corresponds to a 2, which made both the nurse and me chuckle. Once the dizziness wore off, Rebecca was hungry and thirsty, so the nurse brought her apple juice, cookies and graham crackers. Rebecca continued to be upset about the blood coming from her nose, using a tissue constantly to blot it away. They tried a couple of times to tape some gauze like a sling under her nostrils, but she didn’t like how that felt. In general though, she perked up before our eyes and was ready to head home. Her nurse told her and us that Rebecca was the best patient in the surgery center that day, child or adult – everyone was really impressed by how brave and cooperative she was. Jim and I were very proud of her. We would have understood completely had she complained or cried, but she kept herself together really nicely.

At home she continued to keep a box of tissues with her, along with an emesis bucket they’d sent home with her to keep her bloody tissues in. She had been advised to eat what she wanted and felt she could eat, but to avoid things that could scratch her throat at first. I made her some macaroni and cheese, which was a big hit. I went to pick Carly up from day care and reminded her that she needed to be gentle with her sister, to not jump on her, or otherwise bother her as she recovered. The nurses at the surgery center had said that Rebecca deserved a nice gift for being such a good patient, so I had suggested that we could go to pick out a Build-a-Bear at the one store somewhat near us. Rebecca readily agreed – in fact, I think knowing that she was going to get a BAB perked her up more quickly. In the interest of sibling parity, I told Carly that if she could be gentle with Rebecca, that she too could have a BAB. This was a good enough bribe for Carly to be quite solicitous with her sister.

The next day, Carly went to day care as usual so that Rebecca could rest in a more peaceful environment. She was ready for action, though… already feeling much better. We gave her a dose of pain medication at bedtime the night before, and that ended up being the only dose she needed. Surprisingly, she didn’t bleed at all that night; she just had clear discharge from her nose, creating a trail of “crust” on her face. That crust alarmed her at first; she came into our bedroom in the middle of the night complaining that something was wrong, but was easily calmed down once I cleaned her up with a wet washcloth. Right away on Thursday morning she wanted to know when we were going to BAB; could we go tonight? I told her we should at least wait until Friday. She did however talk Jim and me into taking her to lunch at Cici’s Pizza; we then browsed Half Price Books, where she picked out a book for herself and one for Carly.

On Friday Carly stayed home and we all slept in. That afternoon the four of us stopped by Jim’s parents’ house so he could help his mom with a quick task. His dad had knee surgery the same day that Rebecca had her nasal surgery, and while Dad was also doing fantastically well, he was not able to help out. We had a nice visit with them, then headed for the one shopping mall in our area where they have a Build A Bear “workshop”. The girls loved it; both had to really ponder their choices befor deciding on animals. Rebecca chose an owl which she named “Snowy”; Carly picked a panda who was christened “Kayla”. Of course we had to pick out an outfit for each, including shoes, but were able to escape without additional accessories. BABW has a new animal, a tropical Hello Kitty. I have always had a soft spot for HK and might have given in to that spot to get myself a stuffed one… but they were tan in color, I guess as part of the “tropical” theme. I guess I am a HK purist because I didn’t really like the tropical kitty enough to get it.

We had supper at the food court while we were there, just sandwiches from Subway but the girls were entranced by the food court. It is an attractive space, much better than the food court at the mall by our house. As we headed home it looked stormy but we arrived safely. The rest of the weekend was pretty routine; Rebecca’s need for tissues diminished by the day. Her worst annoyance at that point was the antibiotic she had to take to ward off infection; she is so ready to start taking pills instead of liquid medications. She returned to school on Monday and feels great. She’s still a bit stuffy in the nose but I think that as she continues to heal, she will notice a big difference. She is so glad the whole episode is behind her, and so are her dad and I.

How much am I worth?

2010-05-02T14:36:00.000-04:00

Oh wow… Thanks to my Kidney-Onc friends for alerting me to this story and providing this link. Last week CNN aired a story called 'the high cost of dying' featuring the story of a man who had kidney cancer. The story made some good points, but made more points that gave me a headache. Watch it and see if you agree with my thoughts.

Before you even watch the story, read the summary below the video clip. The woman did NOT spend $618,000 on her husband's cancer treatment. That is the total of what was CHARGED to their insurance. And that doesn't mean that was even what the insurance paid... if you have ever studied an explanation of benefits form from insurance, you can see that there is the 'retail' charge for a service, then the rate that is negotiated by your insurance company. Many times it is much lower. That is the amount your co-insurance is based on. Of course, if you have no insurance at all, you are being charged 'retail'; you'll either never pay it off, will go bankrupt trying, or you won't go for treatment at all because you can't afford it.

Drug costs: drugs are Very Expensive... we are all aware of that already. Especially new drugs. All kidney cancer drugs are new drugs, except for IL-2. And again, the prices quoted in the story are noted as what was 'charged', not as what anyone paid for them. It's mind boggling what drugs can cost, but slanted reporting to inflate the costs by the use of the charged amounts in the story.

The wife states at one point that the money spent on her husband's last hospitalization was to 'confirm that he was dying'. What is she trying to say? Were they forced to put him in the hospital? Was he not there to hopefully feel better, even if only for a while? It sounds as though that hospitalization came in his final stage; if they really thought it wasn't going to benefit him, perhaps they could have opted for in-home hospice treatment or no treatment at all. Or is she upset because they expected the hospital treatment to extend his life? If it had, would she now be talking about how expensive it was? With terminal illnesses, hindsight is 20/20. At the time a family is facing and making treatment decisions, they don’t have the luxury of foresight to say, well, this isn’t going to help the patient, so it’s not worth the expense, much less any pain or discomfort the patient may have to endure. The family makes the decisions they think best at that time.

The reporter asks if the husband would have wanted to be 'saved at any cost'. What kind of question is that? If a person thinks that a treatment has the possibility to either cure them, or to extend their life with some quality of life intact, how often is that person going to say "oh never mind, this treatment is too expensive. I'll just lay down here and die. It's been nice knowing you all." I am very aware that in the future Jim and I may have to face some high costs, depending how things go with my disease. So far we have been very lucky and I feel very grateful for having excellent insurance; I get very nervous about the thought of being without that insurance. But it would take a lot for me to give up on my life just because of the cost of treatment. I realize that because I have insurance, and good insurance at that, that thought is a luxury some other people don't have. And that makes me really sad.

Then, after the wife says that her husband would have been appalled at the total cost of his treatments, she notes that their total out-of-pocket was about $10,000 and that she'd do it again in a heartbeat. So now they've acknowledged that the patient's family didn't spend over $600K. And, after making all the earlier shocked comments about costs, she basically says that she wouldn’t have done anything differently.

The last comments of the reporter, as well as the title of the report, bothered me a lot. "Did all those expensive treatments actually help her husband live longer? Not even his doctors can say for sure." No, they can't say *for sure* but they thought that they might, right? Otherwise they wouldn't have offered them as options. Despite what some cynics believe, I don't think that most doctors are in the business of giving people lots of useless treatments, just to run up a high bill. Is there inflation of services in the medical business at times? Absolutely. But the tone of this final comment, along with the title "the high cost of dying", makes me think that the complaints about the costs are because the patient did after all die in the end. Had he lived and gone on to do great things, or even live a productive life, would this story have aired?

So there is the point, after all... should we as a society spend so much money on medical treatments for people who are just going to die anyhow?

Well, there's the thing... who knows if the patient is going to die anyhow? Take a look at this patient. He was free of visible cancer for two years after his nephrectomy. Then he had IL-2 treatments, and went 3 more years before needing more treatment. So there are three years he could spend with his family and friends that he might not have otherwise had. He was gracious enough to participate in a clinical trial, which he likely hoped would benefit him. Without these treatments, when would he have died? Nobody can say, just as nobody can say that the treatments were useless because he died anyhow. I know a number of people (some reading this right now!) who have battled stage IV kidney cancer for years, if not decades. They have been through a myriad of treatments and drugs, some of which worked well, and others which failed miserably, along with various results in between. Not only are these people still alive, they are LIVING lives of quality. They are also sharing their information with others who are newer to the journey, to give us perspective and hope. They are my inspiration as I plan to be another person who holds on for more and better treatments, in the hope of a cure one day, and if not a cure, then the ability to keep my disease at bay so that I can continue to live my life.

The cost of health care in the US is an enormous and enormously fraught topic right now. I totally agree that costs need to be contained somehow. But I also fear that people like me will not get the option to fight to live our lives if decisions are not made carefully. When I read or hear the thoughts of someone who has insurance and has never had to deal with a serious illness, I understand a little bit why they feel like they don't want to have to pay for everyone else. It's easier to feel like others have bad luck and will just have to 'suck it up' when you've never had to face it yourself. It's true that a lot of our circumstances are out of our control. But having the choice to have medical treatment shouldn't be.

If you want to see another story with a slanted comment, watch this clip from CBS news. The story itself is intriguing; it discusses the use of a vaccine to treat prostate cancer. The statistics they report on survival of people on the study don't sound great, but they are likely to be better in real use when they are not just being used on people in clinical trials, who tend to be those for whom nothing else has worked. In the kidney cancer world, the first statistics on the newer drugs didn't impress me. I remember the first time I attended a kidney cancer patient meeting, at which Dr. Rini happened to be speaking - this was before I was his patient. The progression-free and survival times for the patients in the studies didn't sound very long. It wasn't until later, when I met people who have had true success, that I understood that the patients in the trials were much worse off than people taking the drugs once they were approved. Listen to the comments by Katie Couric at the end of the piece. Thank goodness the reporter explains what I have above. I wouldn't disagree out-of-hand that tens of thousands of dollars is a lot of money to spend for a small increase in a lifespan. But again, they are looking at this with the benefit of hindsight... and since these are experimental trials, nobody knew what might happen. But do most people watching and reading these news stories understand that? Probably not.

Possible future irony

2010-04-25T16:11:00.000-04:00

So Rebecca is having her adenoids removed in 10 days. Not her tonsils; they were regular size and have not given her trouble. Everyone keeps asking if she is also having her tonsils removed and is surprised when we say no.

I on the other hand am on my second bout of strep in 3 weeks! I woke up yesterday morning with a soreish throat. The day was packed with activities and I made it to everything just fine, but by late afternoon I was toast. During the evening my temperature reached almost 102 degrees. I sweated my way through the night and by morning was back down to 100 degrees but knew I needed to have someone check me out. The urgent care-type place we went to was blessedly empty when we arrived shortly after 11AM. The LPN who did my intake looked in my throat and commented on how red it was. Then the nurse practitioner came in, and was very concerned because my right tonsil is close to touching the uvula, I guess. I'm now on a new 10 day course of antibiotics and was told that if my breathing becomes difficult, to head right to the ER.

Hopefully either the last antibiotic didn't quite kill all the germs, or I somehow reinfected myself. When I was a kid I would get tonsillitis every year until I was about 11 or 12. At that point the pediatrician told my mom and me that if I got it again, they would need to take my tonsils out. Suddenly I stopped having sore throats! Now I need to put that same 'scare' into my body so that a tonsil surgery isn't in my future.

My sweet girl

2010-04-21T23:12:00.000-04:00

First, thanks to you all for following me still... I am not the most consistent of bloggers, though I want to do this more often to stretch my creative muscles. I appreciate the comments you leave for me.

Which leads me to number two - Sherri, you left a GENIUS idea in the comments on my last post. Rebecca and I went to the Build A Bear Workshop web site last night and found this: http://tinyurl.com/26aunj6

Is that not the cutest? It may be a little big for Froggy but we will make it work. I ordered it online; even if the closest BABW has the outfit in stock, it would cost me the same in gas that they charged for shipping, plus the time it would take to go there and back. AND... if I went in person with the girls, of course they would want to buy something(s)... hell, if I went alone I would want to buy stuff for them! And money aside, the last thing we need in this house is More. Stuffed. Animals. Rebecca is excited about the outfit; we will post a photo once it arrives and we suit up our friend Froggy. Using Rebecca's camera that is; my camera decided to die this week. Jim checked online and the repair cost is at least $100 through Canon, with no guarantee that I wouldn't get some other refurbished camera back. So, I will be saving up for a new camera. Wah.

Over the weekend Rebecca was really expressing a lot of upset about her surgery. I asked her if she maybe wanted to talk to her guidance counselor at school, Mrs. E. At the beginning of the school year, I contacted R's teachers and Mrs. E to give them the heads-up about my then upcoming HDIL-2 treatments. Mrs. E has talked to R a few times since and been a great help to her. I also suggested that maybe R would like to talk to the therapist I was seeing recently; at my therapist's suggestion, R came with me to a session once to talk about how upset she would get if I went somewhere without her (like date night with Jim, to a store by myself, etc.) Rebecca said she'd like to talk with Mrs. E and decided to write her a note. I wish I had scanned it before she took it to school. It was cute - she told Mrs. E that she will be having surgery for her adenoids, that she is very worried and that she and Mommy thought maybe talking to Mrs. E would be a good idea. Rebecca gave the note to her teacher on Monday morning. The teacher promised to put the note in Mrs. E's mail box, but explained that due to testing in another grade, Mrs. E might not be available to talk to Rebecca this week.

Well, Mrs. E came through - she had Rebecca come to her office this afternoon. She reassured R that she will in fact fall asleep so she doesn't need to fear that. They talked about other aspects of the surgery as well; it sounds like Mrs. E said many of the same things Jim and I have been telling Rebecca, but since the words came from her and not us, R is considering them differently. That is fine with me; she's smart enough to know that her mom and dad want to comfort and protect her, and she sees Mrs. E as someone who will tell her the truth. She said that at one point Mrs. E said something to the effect of "if I were your mom, I would tell you that this will all be over soon and it will all be fine." So I said those words right back to Rebecca. And I will keep saying them.

I realized that I do have fears that something might go wrong, not on a major scale, but some complication might happen, and because of that, maybe I haven't sounded as convincing as I should when discussing the surgery with my sweet ladybug. Maybe some of my medical experiences are coloring my words and inflection; also, Rebecca has seen me through a lot of medical crap and knows that strange things can happen, like your incision can come open and cause you to have to have a wound packed. She did seem a lot more calm tonight, and didn't get teary talking about any of it.

I'm so grateful to Mrs. E for helping Rebecca out, and I am extremely proud of my girl for asking for and receiving the help she needed. I could do better at that myself, so will take a lesson from my sweet daughter.

Bullet points

2010-04-20T10:06:00.000-04:00

I'm not sure how it is that I have found myself in the second half of April, as though I was just set here. The past several weeks have been a haze of daily activity, and of plans made by me but not exactly followed through on. Lots of thoughts are rattling around in my head but I haven't been able to bring myself to write, blog or otherwise express them. Here are some of them, in no particular order:

While I am extremely thankful that the HDIL-2 treatments have brought me stability, at least until my next scans (May 20), I am still annoyed at the effects of the resulting hypothyroid condition I am experiencing. Namely... hair loss. At first I just noticed the loss of hair on arms and legs... good stuff as far as I am concerned. But then it started falling out of my head too. It is now seriously thin on top, and looks more baby-fine than usual all over. I *think* hair is starting to regrow, now that I am on a higher dose of synthroid, but it's going to take a while. Wah. Next week I am scheduled for blood work to see if the increased dose is helping; fingers crossed that it is.

I was doing great at walking several days a week and getting more movement and exercise into my day in general. Then, just before Easter, I got sick with what I thought was a cold. The morning after Easter, I woke up with my throat feeling very 'thick', like I could feel it touching itself when I swallowed. Fortunately I was able to get an appointment with one of the doctors in my doc's office that morning. She looked into my throat and exclaimed "Yikes!" Ok then, at least I felt validated that I wasn't faking anything. She had me cultured for strep; the rapid test was negative but she prescribed an antibiotic anyhow. Good thing; on Friday the results of the culture came back positive for Strep A. Luckily I was the only member of my family to get it.

With the strep entering my body, all my self-care ambition seemed to flow out. Only over this weekend did I feel like I was kind of 'waking up' to myself again. This week I am trying to eat better (read: less) and was able to get a walk in yesterday with two of my coworkers. At home I am annoyed with my inability to finish projects that I have started, but at least I have made some headway. By this weekend I should have a bunch of the girls' clothes boxed and put away in the attic, freeing up some precious hallway space.

Speaking of the girls, Rebecca is agonizing about her upcoming adenoid surgery. Every evening she talks about it and shares one or more fears with us. Most of her fears are centered around the thought that the anesthesia might not make her go to sleep, or that she will wake up during the procedure. We've done our best to explain how it works, but she's not convinced. She was concerned that "nobody will be there with me" even though both Mommy and Daddy have assured her that we will both be there. She asked her Grandma to come and Grandma agreed. But, she said to me later, "nobody else will be there". I guess she had visions of the whole family around her... She is also afraid of the pain after the procedure. That is understandable, though I've talked to her about not focusing on it ahead of time. My poor girl has taken to carrying her beloved Froggy around the house, and has been keeping him in her school bag too. She wants to make him a surgical gown of his own to wear on the day of surgery, so we will need to start (and finish!) that project pretty soon. I have my own fears about her procedure of course, but I know it will be fine and I am looking forward to her being able to literally breathe easier. We're T minus 15 days now so we don't have a whole lot longer to wait.

Pink Flamingos

2010-03-26T17:03:00.000-04:00

At Carly's preschool/daycare, the kids have a playground just outside the door of their classroom. The focal point is a large climbing structure that looks like a fort/treehouse. When the kids are in the top portion of the structure, they can see over the privacy fence that borders the playground. There is a small wooded area just past the fence; shockingly, somehow nobody has developed that land as of yet.

Since last fall, Carly has told us several times about the "flamingos" that are in the woods next to the fence. She says she can see pink flamingos in the woods. Since flamingos are not native to northeastern Ohio, I always chuckled at these stories. I figured the kids must be looking at a tree stump or something resembling a flamingo somewhere among the trees.

During the winter there were no sightings of the pink birds; I guess they migrated south to escape the snow. Then last week Carly mentioned them again. But this time the story was more sinister... she told me that the flamingos didn't have legs anymore. I asked her why not, and she told me that "the bad men" cut them off. When I asked how she knew that, she said that her classmate S had seen "the bad men" perform the amputation. Wha?????? Carly and I agreed that one day when I picked her up, she would take me out to the playground to show me these legless birds.

The kid has a good memory... the next day when I arrived in the afternoon, she asked if we could go outside to see the flamingos. I told her teacher why we were going out to the playground and received a puzzled look in reply. After I followed Carly up the steps to the top of the play structure, I looked back at the glass classroom door, where I saw several small curious faces peering back at us. I could almost see the question "Why is Carly's mommy up there?" hanging in the air.

Carly pointed out into the woods and said, "See it, Mama?" At first I only saw a discarded basketball, but then... sure enough, there was a pink flamingo! It appears to be a plastic lawn ornament, laying on its side in the leaves. I could only laugh... she wasn't making things up, she wasn't seeing what she wanted to see... there really is a flamingo in the woods. I asked her if the flamingo used to be standing before S told her about "the bad men" and she said no, it was always laying down. As we walked back toward the steps, Carly pointed out a second flamingo. It was actually the original flamingo, just viewed from another angle, which I explained to her and she accepted.

When we returned to the classroom, I explained the situation to Carly's teacher. She was a bit surprised about the "bad men" story but otherwise laughed about it with us.

And so concludes The Mystery of the Pink Flamingos.

The last 3 weeks

2010-03-23T21:08:00.000-04:00

It's really been that long... since I've been here. Wow. I think of things I'd like to write about constantly but never seem to have the time or energy to actually commit them to words on the screen. Each week that passes shows me that I am definitely recovering from my IL-2 experience, but that I am not fully recovered. My energy is pretty much back, and so I've been able to start walking again, more regularly. The exercise helps to energize me, so it's an 'unvicious' circle. I'm definitely not going to win any speed or distance awards any time soon, but am able to comfortably walk a mile and a quarter in a 30-40 min period. It helps that I have coworkers who also want to increase their exercise level, so I have people to walk with, and others who have offered. Maybe I need to set up a schedule and my work friends can slot themselves in for different days; that would force me to stay on a regular schedule!

I'm still in a hypothyroid condition since IL-2. I finally got around to contacting the endocrinologist who treated my hyPERthyroidism last fall. She requested new blood work and I saw her today; as she thought would be the case, she increased my medication dose. I learned that I've been taking it wrong anyhow. I take it in the morning along with my other meds and multivitamin. Big no-no according to the endo! She told me to take the synthroid first thing, and not to eat for an hour after taking it. After breakfast I can take my other meds, but the multivitamin needs to be taken at least four hours after the synthroid. Dang... I'm going to have to remember to take stuff at two different times a day! These instructions were not mentioned in Columbus, where I started on the medication. I told the endo that MAYBE they had given me these instructions at the time but I was too out of it to remember them. But no, Jim confirmed that there were no big special instructions given then. That made me feel better, since I have had definite periods of spaciness all year; really for the last six months, actually.

The spaciness is odd; I just forget things that I used to remember. One really odd thing is that I can't remember where I park my car in the garage at work. It's not a large garage, so it's not a big problem, but when I walk out to my car at the end of the day, I can not remember which row I parked in. Some of you are probably saying "that's nothing, I forget things all the time too" or "eh, that's age creeping up on ya" or things like that. Yes, I did forget things before but this feels different. And sometimes I just forget to do part of a usual routine, like when paying bills. That lapse has caused problems with a few late payments, though on that issue I seem to be back on track. Each week I feel stronger mentally as well as physically, and realize that the previous week, I was more 'spacy' than I realized at the time. My parents would call me Dizzy Lizzy as a joke sometimes, just because of the rhyme, but I have definitely felt like a dizzy ditz in the past few months!

Speaking of medications, I discovered last week that my ADD medication really does help me. I know this because I ran out of pills and went a day without it. I really had trouble concentrating on ANYthing all that day. I made it through the day, but made sure to pick up my script for it that day so that the next day would be better... and it really was. It's no miracle drug; I can still lose interest/attention for a project halfway through, especially at home. At work it's harder to judge whether the feeling of not getting things accomplished is due to ADD or more likely, because like everyone else there, I'm being pulled in many different directions, with competing priorities. I'm absolutely not un-grateful to be employed, but there is just too much going on to be able to really focus hard on anything. Because of course as soon as I focus on one project for a while, I am suddenly behind the eight-ball on several other things. That is true at home too, but I'm not at risk of being fired by my family, so it doesn't feel so critical most of the time.

Throughout this time of my health issues, we've been gathering information about Rebecca and an ongoing issue. She has long complained of having a stuffy nose, being unable to breathe through her nose, etc. When she's felt really stuffy, we've sought medical help and as a result she has tried several allergy medications (over-the-counter). At her last annual exam, her pediatrician agreed that it was time to do allergy testing, so we consulted with a pediatric allergist. He is a wonderful man; great with Rebecca and very good at explaining everything. She had to have the patch testing done, which she wasn't thrilled about but got through just fine. According to her back, she only has slight reactions to maple and cypress trees (neither of which were in leaf in January!) and nothing else. The allergist thought that her adenoids might be the issue, so he referred us to an ENT, while also prescribing Nasonex spray. The spray did nothing but annoy my ladybug, even after using an extra month as recommended by the ENT. We followed up with the ENT earlier this month and got to watch on a computer screen live video as the doctor put a tiny camera up Rebecca's nose. Sure enough, both adenoids are enlarged, particularly the left one. She also has an enlarged turbinate in her left nostril. It was decided to go ahead and remove the adenoids, as well as shave the turbinate. This procedure will take place on May 5, a Wednesday. The ENT works out of a suburban surgery center on Wednesdays, so we won't have to brave the madness of Cleveland Clinic's main campus. The procedure itself should only take about 40 minutes, and we'll be able to take our girl home that day. The doctor says she should be ready to return to school the following Monday. We are all a little nervous, as anyone is when facing anesthesia, but I know it will be fine. I am looking forward to my girl being able to breathe better. We have noticed her snoring more at night lately, so the timing of this surgery is definitely right.

Lots more going on, both in my life and in my head - will have to try to dump more out later.

Winter... blah...

2010-02-27T18:16:00.000-05:00

January and February seem to be making up for the mild weather we had early in the winter season. We've had over a foot of snow here in the past day or two, which is far less than other areas of the US have gotten but is still no fun. And our snow blower is on the fritz, which doesn't help. Well actually, our snow blower decided to find a copy of Financial Times that the delivery person tossed haphazardly into our driveway, and got covered with snow before we picked it up. So now this stupid paper is jammed between one of the blower blades and the wall of the blower. Jim has been sawing at it with a micro blade and gotten some of the paper freed, but not enough... Stupid free subscription... On the other hand, while working in the garage on the blower, Jim organized a bunch of other stuff and really made a big difference. Our garage is jammed full of stuff, for lack of a better word, and so our cars reside outside. But maybe not forever; he has made some good progress. We were blessed with angels who started the good work for us while we were in Columbus in December for my treatment. One of the things blocking our path in the garage was a new set of attic stairs that had been purchased but not installed. Two of Jim's brothers and his nephew came over and installed the new stairs, without us knowing about it until we got home. So not only did a needed job get done, but we gained back some garage real estate which enabled Jim to work on some other stuff. In general I feel like our house is a big chinese puzzle - any time we want to work on getting rid of/organizing stuff in one place, we find that the space it should go to is also full. So this feels like quite the breakthrough.

I hope to keep the energy going inside, myself. My energy level seems to have finally increased to the point where I am feeling like myself again. Now to translate that energy into action at home...

One of my goals for this year has been to get back to walking regularly. On Thursday of this week I did my first full 30 minute walk since coming back to work from my medical leave.

I had been walking with coworkers fairly regularly during the week , but then spending the autumn having to be out of work and have lots of yucky chemicals poured into my body messed all of that up. I have been wanting to get back into walking; I want to do regular exercise. Plus, as part of a rebate program at my employer, I signed up for a 'coordinated care' program for hypertension. I talk to a nurse monthly; I am supposed to take my blood pressure daily, eat a low-salt diet, and get 30 min of exercise 3-5x a week. If I stay compliant with the program they will reimburse me for my blood pressure medication copays later on. I really signed up though to push myself to exercise, and because if I stay compliant with my care program and I go have an annual physical this year, at the end of the year they will refund the difference in our health plan premium between the 2009 and 2010 rate. That is about $200; would be nice to have, though frankly, our health plan has spent so much on me in the past few years that I think they are entitled to keep that money.

Anyhow, I've been back to work for 6 weeks now. I've walked a few times during my lunch time, but didn't have the stamina to do more than 20 min or so. But in the past week or so I have felt my energy level increase quite a bit. Every day this week I planned walking time in my schedule and every day either something got added to my schedule or I blew it off because I was "too busy". On Thursday, I told myself I had to do it! As I was lacing my walking shoes, one of my officemates popped her head into my cube to ask a question, and offered to walk with me. That turned out great - with the distraction of company and good conversation, I was able to last a full half hour. Sadly, I walked exactly 1 mile in that half hour... so not too swift, but that is okay... I did it. I just need to keep doing it. It remains my goal to walk the 5K when Race for the Cure comes to Cleveland this fall; I still have plenty of time to build up to walking 3 miles comfortably. Rebecca wants to walk it with me, so once the weather is better we will start to train at home. I know Carly will want to do it too, but I don't think she can make it that far and there is no way I am either pushing a stroller or pulling a wagon containing a then almost 5-year-old for 3 miles! So she will just have to hang with Grandma or whoever we know down there - I'm sure we will have company among our family and friends for the event.

I have recommitted to using the stairs in my building at work more, too. I park in the basement garage which is four floors below my office. Last summer I worked up to climbing all four flights each morning...
it sucked, but was a good workout. (As long as nobody in my office needed to converse with me for the first several minutes after I got to the top of the stairs!) When I learned last July that I had multiple metastases, I gave up and quit doing the stairs in despair. The IL-2 really zapped my stamina; throughout the time of my treatment I gauged my energy level by how difficult it felt to go up the flight of stairs in my house. Since I feel more energetic lately, last week I started getting off the elevator a floor early and taking the last flight of stairs to my floor. This next week I will do two flights... once that feels a bit easier I'll have to start climbing all four flights - it would look pretty stupid to take the elevator up one floor! Our wellness folks at work have a little spreadsheet program on our intranet where we can log our stairs taken each day. The program keeps track of my total stairs (up only) and as I get to certain totals, I get a little notice that I have reached the equivalent of the top of some landmark. I have reached the top of the Empire State Building as of this week... next up is the CN tower. Last year I wanted to make it all the way to the summit of Mt Everest so that is my goal again this year.

I have to try to get these bits of exercise in where I can; it's so hard to have time to work out these days. Most week days, I am gone from the house for 11 hours. In my waking time at home, there are so many things that need to be done that I find it hard to even imagine fitting in exercise time. Through my employer I could join Curves for free, and there is a Curves around the corner from my house, but they aren't open either early enough or late enough for me to fit in a workout before or after work. Oh dear Clinic, please move forward with a formal work from home policy! If I didn't have to go into the office 5 days a week, some of the time I would save could be used for working out - wouldn't that be nice? (Not to mention the money I would save on gas; it would be a pay raise of sorts) I have been lucky to have worked for supervisors who have allowed informal work-from-home days but something more official would be really nice. Moving closer to my workplace is not a consideration; we really like where we live and we like being near most of our family, both for general visiting and for childcare coverage. Jim got a tip on a possible job, which unfortunately is even farther from our house than where I work. A job is a job, sure, but being on the road for so long each day is really not conducive to a good quality of life. Of course right now having a job at all would be a good thing... he keeps sending in resumes and completing applications, and has gotten a few interviews, but not been successful. He is officially unemployed now, waiting for unemployment compensation to kick in, and still looking. Bleah.

Fortunately the girls have been dealing with all of our changes pretty well. Both are enjoying school; thanks to the generosity of the owner of Carly's preschool/day care, we are able to continue to send her there as they are waiving her tuition while Jim is looking for work. Thank goodness for that, not just because being home with Daddy all day would drive both Daddy and daughter insane. Carly is getting closer to being a reader; suddenly letters make more sense to her and she loves to fill pages with words that we spell for her and she transcribes. Rebecca is really enjoying first grade; doing really well and trying hard. One of her friends recently called here to talk to her and left the cutest message on the answering machine. They have had a few conversations on the phone, which cracks me up since they are in the same class at school and both go to after-school together, so it's not like they don't see much of each other.When her friend (E) calls, Rebecca carries the phone around with her as she talks, and Carly trails behind. E has a sister in Carly's preschool class, so Carly wants to talk to her as well. Unfortunately Carly hasn't mastered the art of phone conversation yet; as her grandma well knows... whenever C gets on the phone with Grandma she talks about things she is looking at, which of course Grandma can't see through the phone. It makes for a confusing conversation!

Some more IL-2 prayers please

2010-02-08T21:51:00.001-05:00

A fellow warrior, Chris Battle, just started IL-2 today at Duke. You can read his story here - http://www.caringbridge.org/visit/chrisbattle - and you should; he has a good sense of humor. Let's send some PVs for a great, that is complete, response for him!

The next chapter of the story

2010-02-08T12:33:00.000-05:00

When I left you, dear readers, I was busy crabbing about the miscommunications surrounding my MRIs. Ugh. A lot of that emotion was being driven by fear, mainly fear of the unknown. I did make it through the week, though I kept wondering, am I going to Columbus? Am I not? What is next?? On Thursday I carried my cellphone everywhere I went so as not to miss a call from them. I got home a bit later than normal and discovered that the NP left a message on our answering machine at 6pm. ARGH... the curse of having more than one phone number listed in my record!!!

On the message the NP told me that everything remained stable from my November scans. So, again, nothing new, nothing grew. She said that Dr. O had not yet read the reports so she would be talking to him on Friday, and instructed me to call back on Friday afternoon. Upon hearing this, I burst into tears... more waiting! Jim came over to comfort me. He had heard the message when she left it and he was reminding me that "stable" equals "good news". Of course he was right, but at that moment all I could feel was the stress of still not knowing what was going to happen next. At that point (Thursday night) we hadn't done any of the things that need to be done if we are going to be away for several days. The list includes: getting laundry done so we can pack the girls' things for staying at Grandma's and packing our own things; stopping mail service; making a reservation at the dog kennel; etc. etc. etc. Throughout the evening I collected myself and did see the good news in the message. Of course I was a bit disappointed that there was no shrinkage; I had hoped that with all the immunologic symptoms I've been experiencing (low thyroid, joint pain) that shrinkage would follow. It's possible that these lesions are just dead or dying tissue though, so that is what I am visualizing and hoping for at this point.

On Friday I called Dr. O's office to let them know to call me on my cell phone, so I wouldn't miss a call, and that is where the NP called me at midday. She told me that Dr. O didn't think I would benefit from any more IL-2 at this point. As we talked, she was very apologetic, but I reassured her that I understood and agreed. If the scans had shown any positive change, I would have gladly gone back for more treatment, but I just couldn't imagine putting myself through it again if I've remained stable all this time, especially given the toxicity of the stuff. She explained that they would send the results up to Dr. Rini here and that Dr. O would call him to discuss.

So, that chapter is closed. I had already emailed Dr. R and HIS NP, Shari, to ask if by chance they had received any of my results yet, before I even heard back from OSU. They had not, though Shari confirmed that my brain MRI was normal. (so there, I still haven't lost ALL of my marbles yet) Dr. R was traveling but was gracious enough to email back and forth with me a bit. According to him, "I would propose no treatment until your disease worsens. Often pts can have many months of stability after IL2. We should see you in 3 months with CT scan." I am hopefull that the word "until" becomes "unless" over time. But at any rate, this buys me some time... time to continue healing from the IL-2. Time to work on projects at home that I have had mental but not physical energy for. Time to spend with the family and with friends! Time to refocus my energy at work and work on some things I have wanted to accomplish.

People make me crabby

2010-02-02T17:45:00.000-05:00

So yesterday was a "big day" for me... post IL-2 scan time. These scans were scheduled back in December when I was on my way in to the hospital for round 2, cycle 2. Just to recap, these are the tests they want to do:

- MRI of brain - just checking to make sure there are no mets because if there are, I can't continue IL-2

- CT scan of chest. Have not had chest mets to date, keeping watch

- CT of abdomen and pelvis - they can do these all at one time. Since the results of the abdominal CTs I had in Cleveland in July vs Columbus in Sept were interpreted differently, that leads to

- MRI of abdomen. The liver mets are what caused all the flurry in Sept - Cleveland saw them on CT, Columbus didn't, but then did when they did MRI. Since I have metastasis by the ovary, they like to MRI the pelvis too.

My IL-2 onc strongly prefers (requires) that the imaging be done at his facility to control variables of machine and interpreter. OK, not optimal for the patient who lives 2-3 hours away but understandable and do-able.

Back in November, I was scheduled to spend 3 days in Columbus having these tests. The reason given by the radiology folks was that with one kidney, I couldn't have more than one dose of IV contrast per day. We want to protect that kidney, so okay. I didn't like that schedule but planned around it. The day before these scans, my IL-2 doc's office called to ask why I've spread my tests over 3 days; I told them that radiology insisted on that schedule. They explained to me that I could be hydrated to flush my kidney so that I can in fact have more contrast in one day. OK, didn't know that, and apparently neither did the radiology scheduler OR the appointment person at the IL-2 office. Doc decides that instead I will have a pelvic CT so they can shave a day of travel for me . Good.

Now back to December. Onc decided that for Feb scans, I could have the brain MRI in Cleveland, since they don't need to compare that film to previous films. Good news! The rest of my tests were scheduled for one day, Feb 1. CTs at 4:20 and MRIs at 5:00. So Jim and I made arrangements for my sister to take care of the girls after school, and headed down to Columbus well in time.

When I arrived, the tech briought me back to do a finger stick to test my creatinine. They do this every time and I like it - again they are making sure to protect my kidney. She told me that there was a note in my chart to be sure to do this since I left the hospital with a creatinine level that was somewhat elevated. back in December. Well, it's still elevated. So she had to call the doc's office to see what they want to do. It was decided that I would not have IV contrast for the CT scans. (I still got the "joy" of drinking my very favorite "berry smoothies" but oh well) I did still need contrast for the MRIs so they needed to arrange to have me hydrated by IV after the test. Due to the lateness of the day, they couldn't get me in to be hydrated at the chemo station there at the same facility as the imaging office. Instead, I would need to go to the hospital and to an immediate care unit where they could do it. OK, again, not how we planned our day, but we dealt with it... we had planned to have dinner with our Columbus friends and had to scrap this, but my kidney comes first.

CT went fine. Then I was brought back for the MRIs. The tech told me that I could only have the abdominal one - again because of the extra dose of contrast. She said they wiouldcall my onc's office about it in the morning and that I should check in with them too. Maybe you can come in Sunday to have the MRI, she suggests? I'm thinking, what's the point... if the abdominal MRI shows bad results, it's moot. Or, if the pelvic CT shows bad results, it's moot. But no point in discussing this with her. I got through the MRI... sans Xanax these days though I always feel a wave of panic upon being slid into the tube... keeping my eyes closed the ENTIRE TIME is the trick for me.

Jim and I then headed to the hospital, where a super-nice nurse got me hooked up. Fortunately, the MRI techs had accessed my port, so she didn't have to - I still had the needles inserted so I was good to go. The MRI folks led me to believe I might be at the hospital for hours. No way, the nurse cheerfully informed me; your order is for a half liter over an hour, then you're out of here. All right, better news than I 'd had in the past several hours! She brought Jim and me each a bottle of water to drink while we waited ,and I spent the time playing with my DS... CrossWords and other word games. Friendly nurse came back to check once or twice and at the end, saw how little was left in the IV bag. She told me to take a big swig from my water bottle as that would more than compensate for the remnants of IV bag, so she could disconnect it! I like the way she thinks!

My lovely husband drove our weary selves home, with a stop at a Subway along the way where the girls at the counter were not thrilled to see sit-down customers 15 min before close, but okay with it. Less okay after I dropped my full drink over the side of the table... but luckily she was already mopping so the equipment was right there. We picked up the kids, got home and all fell into bed.

I was feeling so wasted this morning that I let my team know I would be working from home, to save me from having to make my long commute. I called the onc's office and left a message to talk to his NP. She called back and I quickly learned that radiology had not talked to them. She was upset that they canceled the pelvic MRI without consulting my doc or her. She apologized for the miscommunication and told me that she would talk to the doc then call me back.

I heard back from her around mid-afternoon. Doc was unhappy too but thinks it will be okay to use the tests I did have. She tells me that if I do need the pelvic MRI that I might have to have it in Cleveland "which wouldn't be optimal". I thought, WHEN??? I asked her when we'd have results of the Monday scans. Not until Thursday, so she plans to call me late in the day on Thursday.

So, here is what could happen:

1 - the tests I did have show clearly that the IL-2 is working, so I go back to OSU on Monday 2/8 for round three of IL-2.

2 - the tests show clearly that the IL-2 is NOT working so no more IL-2. Whether I would still be expected to see the onc in Columbus on 2/8 is an unanswered question, but I don't see the point if this is where we are.

3 - the tests are inconclusive without the pelvic MRI. I can't imagine I'd be able to get that scheduled, and results down to them, by Monday to start round 3, but who knows what they are thinking.

As I think about all of this, I can feel my heart rate increase and the stress build up, so that I have to focus on shaking it off to calm down. I absolutely HATE not having a clear plan, not knowing what is going to happen until the last moment. And that is what this feels like.

Assuming I WILL be meeting with the doc next week, I WILL make a suggestion that the clinical onc folks, the appt folks and the radiology folks all need to GET ON THE SAME PAGE. No patient needs this kind of stress, and I can tell you that I DEFINITELY don't.

Next update hopefully Thursday, with hopefully some good news.

Eh...

2010-01-19T22:47:00.000-05:00

Back to work, as of last week... six weeks away and by the end of the first day I felt like I'd never left. That can be good as well as bad. January is a particularly busy time. Even though I no longer have official responsibility for our benefits computer system, I do still have knowledge and have been helping to figure out the scenarios where what people elected for this year, is not what they ended up getting. The percentage of these employees is small, but when you are talking about upwards of 40,000 employees, even 1 percent is a lot of people. My head is pretty "swimmy" by the end of each work day but we're slogging through it and seeing some patterns that should help us to avoid a lot of these errors next year.

Last week by the end of the week I was toast. My stamina is definitely not at 100%, even though I believe it is good enough to work. I felt very sleepy on my commute home Friday, though I caught a bit of a second wind once at home. On Saturday though, forget it... I took Carly to her 9:00 ballet class. When we got home I puttered around a bit then told Jim and Becky that I was going to lie down, and so "just in case" I didn't get up in time, not to forget Becky's 1:00pm dance class. I fell back into bed and that was all she wrote for a good 3+ hours. On Sunday I catnapped, but probably should have taken a real nap. I will have to ask about how long I need to be on medication before my thyroid is checked again; I wonder if my fatigue is more from the cumulative effects of the IL-2 or if the hypothyroid is contributing.

All in all, I'm awake and aware, and I can concentrate at work, which is easier because there aren't all the distractions of home. Actually, when I work from home I can tune the distractions out, too; just not so much when I am not trying to do paid work. Lately I have been full of ideas of things I can do to re-organize and simplify different areas of the house, but just don't have the energy to put any of my plans into motion. I know, all in due time, but it's a weird feeling to want to be active but not be able to get my body to comply. And I've had lots of ideas I'd like to explore here, as well as experiences to share, but have lacked the energy to write them out. Last month my good friend Deb died, I wrote a lengthy post about her life and its impact on me, and then watched as my PC imploded and sent it into the black hole. I just haven't had the heart to do it again, but one of these days, I will.

I did go for a walk today at lunchtime. Walking is something I have been good about at times, then let go of for long stretches of time. In theory I should be able to get two days of walking in over the weekends. Unfortunately, between our busy schedule of weekend events and errands, and my desire to spend time with the girls, it's difficult to fit in. They aren't old enough to walk with me at a good pace yet; besides, I would benefit from some quiet, head-clearing alone time. Anyhow... I used to walk semi-regularly when we were at our old building, which was located on acres of wooded trails. It was a corporate HQ building that was donated to us, and the walking trails were a point of pride there. Then we moved to our current location, which is in the midst of an office park block in the suburbs. There is a measured mile around the block, doable, though it doesn't feature the interesting scenery my coworkers had gotten used to. We also have a skyway between the two buildings we use; it's a nice place to walk when the weather isn't conducive to being outside. Plus it has the advantage of being a quarter mile round-trip... very convenient for measuring.

I have a goal, to be able to comfortably walk 5 kilometers (3.1 miles) in time for the Race for the Cure when it returns to Cleveland in the fall. I have done the 1 mile walk before, but have been thinking about doing the 3 mile walk instead. First my motivation was to push myself to get more exercise so that it would be an easy thing to do; that motivator is definitely still there. But then when Deb died of metastatic breast cancer, I wanted to do it for her... she would be proud to know that she continues to inspire me even after her death.

Today I finally got myself to take a walk at midday. I've had walking shoes with me every day since I returned to work last week but today I actually put them on and left for a bit. I only ended up walking for 18 minutes, with a 2-3 min break in the middle, when I ran into a co-worker who didn't know I was back from leave. I walked a total of a half mile... smokin' fast, eh? I'd call it pathetic but I really was tired at the end of the time. But it's a start; hopefully tomorrow I can log another entry on my walking chart. RFTC is still about 8 months away so I'm not panicking... yet! I am usually nowhere near that slow, but then my legs never hurt the way they did by the end of the 18 minutes. It's the same thing with going up stairs. My department is on the 4th floor of our building. Last summer I had worked myself up to going up the four flights from the basement garage; 96 steps in all. It wasn't fun, or easy, but I was doing it. Now, I can do one flight but the backs of my legs aren't happy; frankly they aren't thrilled by the 13 stairs at home either. There is improvement, for sure; "not thrilled' is much better than when I felt like I was pulling myself up the final few steps here just by the railing. So it's progress, and I will take it. But you know, 90-some9% of the time I don't think about cancer, feel like a cancer patient, etc. in my head. So having physical limitations is just... startling.

Oh, and to finish my whine (no cheese though; I am trying to get back to NO SNACKING after supper), I'm sick of winter and cold weather already. Last week we had snow and brutal cold. This week has been milder and melting but I am still cold. We so need to move... only we don't want to move away from our family, which we have a lot of here. Oh family... maybe the rest of you want to migrate south with us???

1969

2010-01-04T13:14:00.000-05:00

From reading here recently, one would think that cancer is pretty much the only subject on my mind these days. Sure, it's right in the forefront, as expected; I mean, it would be odd if it wasn't, given that I am in treatment right now. And since I use this blog partly as a communication tool to my family and friends, I've tried to make sure I keep my story up to date reasonably well.

However, when I started out, I hoped to also write about come of the other contents of my brain, for various reasons. One of the areas I'd like to spend more time on is memories. I'd like to record things I remember from my childhood and even young adulthood so that I can share them with my kids, as well as with those of you who were a part of my life back then. I recognize that these memories may not be particularly interesting to some of you, so you'll just have to bear with me when I wend my way down Memory Lane. Heh.

During 2009 there was a lot of attention paid to the year 1969. That year was a big one in my life, and probably the first year I was aware of the world around me, at least a bit. I turned five in September of that year and it jars me a little to realize that the 1960's are now 40-plus years ago. Yes, Virginia, I am middle-aged now... even if I don't feel like an adult lots of the time. Wow.

I recall the Apollo moon landing; my parents of course followed it on TV and had me watch with them. We had one TV in the house... imagine that... the TV came with only VHS channels so we had a "Finco box" on top, which was a little box that allowed you to tune in to channels above 14. Needless to say, this was a black-and-white TV. Anyhow, I remember seeing the grainy images.

Next on the TV was a new show that my mom wanted me to watch one day. She sat me down in front of the TV to have me watch this show called "Sesame Street". I thought the name sounded unpromising but then the program started and I was in love. What a great show! Great characters! Fun stuff going on! How ever did my mom know about such a thing? I liked to watch TV at that age but my tastes ran more to reruns of Bewitched, which was my favorite because not only was Samantha a good witch, but the actress's first name was Elizabeth, like mine. I also loved the Dick Van Dyke show; my mom said I had it pretty much committed to memory; also Dark Shadows, which scared the heck out of me but I loved, until my mom would make me shut the TV off. So this Sesame Street program was really special. And my then baby sister could watch it with me. I was scared of Gordon once; he was showing us how to do push ups or something. I didn't feel like trying so I just sat there watching him. Suddenly his face got close to the camera and he barked, "Don't just sit there! DO IT!" Oh my, I was sure he was talking directly to me!!! I ran around the back of the TV, easy to do when your set is on a rolling stand, and hid until the segment was over. I didn't like Gordon much for a long time after that.

1969 was the year I started school. At the time, we were living on the south east side of Cleveland, on a street called Prince Avenue. We were in the "old Slovak neighborhood" just a few streets down from the street where my dad grew up and my grandma and uncle still lived. My mom registered me for school in the Cleveland public school district, at Paul Revere elementary school. She prepared me well for going to school, telling me how much fun I would be having, and I wasn't afraid to go. She also taught me how to tie my shoes because I would need to change shoes for something called "gym class." Besides, there were lots of kids on our street, mostly older than me, and I was dying to go to school like they did. My "best friend" Michelle lived two doors east of us and was in the magical second grade so I couldn't wait to have school stories of my own to share with her. Mom and Barbie (little sis) walked me to school each day and picked me up to walk home each day. I can't remember my teacher's name, just an impression of her as young-ish with short brown hair. I do remember playing a lot, learning "hi ho the dairy-oh" and such. Once I saw Michelle when her class and mine were both in the "labratory" (lavatory) at the same time!

Then my parents rocked my world by looking for a new house. We were indeed part of the "white flight" out of the east side of Cleveland of the 1960s and 1970s. We would go with the realtor in her nice car and look at different houses. I remember going to see the house we ended up buying;, mainly because in the family room they had some kind of doll house sitting on the window seat and I thought I would be able to play with it if we moved there. The house was a small ranch in Orange Village, a southeast suburb. It sat on an acre and a half of semi-wooded land. There were 3 bedrooms, one bathroom, a two car attached garage, and a family room that had been added on the back but was not really usable in the winter because it had no heat! But the big, big deal about this house was an in-ground swimming pool, 32 x 16 feet, in the back yard. It was just the coolest thing as far as we kids were concerned. My parents ended up buying the house and we moved in a couple of weeks before Christmas. By looking at a 1969 calendar online I am guessing that we moved on about December 13 because I know it was a Saturday. I wasn't allowed to help move, but instead spent the day with my sister at my Grandma's house until my parents were done and came to get us. Our first night there, I can recall sitting on the couch and watching Green Acres on TV! Bless my poor parents, they managed to get a Christmas tree up that year. I can't imagine trying to move and do Christmas for 2 kids at the same time.

Moving of course meant switching schools. On my last day at Paul Revere I was very shy and declined to take my art projects home with me though my teacher had them ready for me. I was registered for a new school, Moreland Hills elementary. To get there, I had to take the school bus! Kindergarten was half-days so we had a special bus run for just the K kids. My teacher was a veteran teacher with white hair named Mrs. Doll. She was the nicest lady. We had more "work" to do at MH than we'd had at PR; we did a lot of worksheets which I had never done before. Of course we always had to write our names at the top of each page. I was not fond of this practice because I had to write "Elizabeth" rather than "Liz" in those days. Mrs. Doll had this funny habit of writing my name again above where I wrote it on all my papers and at first I couldn't figure it out. A boy named John with big green eyes sat across the table from me and would stare at my papers and a me when this happened. Finally I looked at his paper, then mine, several times and realized... she was showing me how to write my name using both upper- and lower-case letters. At PR we used all uppercase but at MH were expected to use both cases. And sure enough, all of John's papers said "John" while mine said "ELIZABETH". I decided to give Mrs. Doll's way a try and suddenly she stopped writing my name above my own version! Breakthrough!

Midway through the school year (getting in to 1970 here but it's my blog so too bad) we switched from Mrs. Doll's class to the class adjoining. The teacher in that room was also older, and named Mrs. Fitzismmons. She was nice too, though I really loved Mrs. Doll. I spent the rest of the K year there loving school a lot. One day we went on a field trip, on the bus. I have no memory of where we went, but Mrs. F sat with me that day. As we drove, I read the street signs to her. "speed limit 35" "yield" etc. She was amazed - how did I know how to read those signs? I shrugged; I had learned to read at home before starting school and assumed everyone could read. Turns out not so much... and one day every week I left my class for a while to work in a little room with a teacher and a few other kids, both in K and in first grade. It was the start of a school career during which I felt a mixture of pride for doing well, and embarrassment for being "too smart" or different from a lot of kids. Later additions of body fat (second grade) and glasses (third) made my discomfort grow immensely, but those are topics for other days.

CTTS - Carly edition

2009-12-25T23:06:00.001-05:00

We had Christmas dinner at my sister's house. All day Carly (age 4) barely ate anything, thanks to her extreme excitement over CHRISTMAS!!! I predicted to Jim that once we got home from my sister's, she would be very hungry.

Sure enough, a short time after we got home (about 8:30pm), she came into the kitchen and perused the refrigerator and pantry cabinet. She then went into the laundry room, where we have a second fridge, mostly for when we have parties and for the additional freezer space. There is also a shelving unit of canned goods and boxed goods in the laundry room.

Carly emerged from the laundry room and set a can of Progresso Chickarina (official soup of the Monahan girls) on the kitchen table, where Jim and I were sitting. Jim warmed up the whole can up which he brought to the table in a large bowl, and dished out a small bowl. She ate some, then went off to play with the CHRISTMAS!!! loot some more. Later Rebecca came in looking for some sustenance and had a small bowl. Then Carly returned and polished off the can. Upon asking if she would like the soup reheated, I learned that she likes her soup cold, as in "no mom, this is cold but I like it that way. I don't want you to heat it. Next time we have soup, can you give it tome without heating it? I prefer it cold."

As she finished eating, I complimented her, telling her that soup was a good choice since she hadn't eaten much today. She replied, "I didn't see anything I wanted there (pointing to fridge) or there (pointing in direction of second fridge) So I said to myself, 'hey buddy, how about some soup?' "

I love my kids...

Asking for your help

2009-12-23T19:48:00.000-05:00

I have a hand out asking for some financial help, folks. It's not for me, but for ACOR, about whom I have written before. ACOR sponsors a Kidney-Onc email list that I have belonged to since my diagnosis. At first I couldn't bear to read the messages there because they were all about treatments and drug side effects and even a couple of messages announcing the death of a member. I remained a member of the group but didn't have the emails sent to my box. As my disease progressed, I came back to the group and have become more active there. From the other list members, I have learned so much that will help Jim and me make the best decisions possible for any future treatment. And I have made friends there, people from all over the world who are smart, funny, inspiring, you name it. This list has been a lifeline not only to me but to many others. Kidney cancer isn't prevalent enough to have a lot of attention paid to it, lots of big fundraisers, etc. but the ACOR list is one place where a true community has been built. I'm willing to bet that there are folks on many of the other lists there for other cancers who would say the same.

This week all ACOR members got this message via email from ACOR's founder, Gilles Frydman. It is truly terrifying to think that the lists are in danger of closing down; the loss would be felt by so many, and it would be criminal to see all the hard work of Gilles and others slip away so quickly.

If you possibly can, please donate whatever you can to ACOR to help save it. If you live in the United States, it's important to note that ACOR is a recognized by the IRS as a 501(c)(3) nonprofit organization. So, you can add to your tax deductible charitable contributions for this year. And if finances don't allow you to donate before the end of the year, you can certainly donate in January and get a good start on your 2010 taxes. :-) There are so many places out there that could use our support and they are all worthy. But more and more, I have come in contact with these "little guys" who despite shoestring budgets and a lack of household name recognition, have done so much good for so many. And just because they aren't a "name" charity, they don't get the support they deserve.

Thanks for your support. I know my fellow Kidney-Onc'ers will appreciate it too.

Round two is history

2009-12-20T13:15:00.004-05:00

and I feel like history right now, LOL. This time I made it through 6 doses before the side effects pulled me down. Each and every cycle is different... two weeks ago I had rigors almost every dose. This time I had none. This time, my blood pressure flirted with major decline but behaved; my creatinine flirted with outrageous heights but behaved, enough that I could have gone for seven or more doses but I just couldn't do it. And I will admit, being away from home and the girls this close to Christmas made it all the harder. We left for Columbus this time from a party at Jim's cousin's house on Sunday evening. For the first time, Carly sobbed at our departure. I know that the late hour and her fatigue from a busy day played into it but it was still heart wrenching to walk down the street to our car, listening to both of my babies cry while their grandparents and other family members consoled them. I of course cried too, telling Jim how guilty I felt for making my babies cry. Yes, it's temporary. Yes, it's for the best of reasons. That doesn't make it any easier to endure at the time though.

We were able to go home on Thursday, which was better than the hoped-for Friday and MUCH better than the dreaded/expected Saturday. Of course, we once again had to wait HOURS for the discharge papers to be finalized; I was told at lunch time that I'd be able to go home and we didn't head for the elevator until about 4PM. It was a rough ride home; this time I gained 15lb of fluid in about 3 days and my joints were screaming at me, from the major ones like knees and shoulders, to all of my fingers; I couldn't fully bend or flex those until Saturday. The water is coming off pretty quickly even without taking the Lasix that was prescribed; the joint soreness is much improved but I have a ways to go before I don't feel like a creaky body. My sister has Rheumatoid Arthritis; on Friday I told her that I think I can understand how she feels when her meds aren't working, and that I cry for her. It is beyond awful.

Oh, and this time I leave the hospital in a hyPOthyroid condition, with a prescription for Synthroid. I am not sure how long this is expected to last but will check into it. Like the hyperthyroid episode, it is a "good sign" because it's considered an immunological response. In those 6 doses they gave me over 500 million total t-cells; at least some of them have to be working, right? And they had better be... I am scheduled to go back to Columbus on Feb 1 for one day (yes, you read that right, ONE DAY) of scans. Dr. Olencki decided that I could have the brain MRI done in Cleveland since they don't need to compare the current scan to prior ones; it's just the check to make sure that I haven't developed any brain mets along the way. I am tentatively scheduled to be readmitted for Round 3 on Feb 8 and Feb 22. I asked Lori, Dr. O's Nurse Practitioner, what exactly are we looking for this time? Since my case has been such a gray area, I wanted clarity on what would be necessary to continue, given that I have stability everywhere but the one area where they feel the "growth" is actually cancer attacking activity. She said that these scans need to show "measurable shrinkage" of my lesions. That is fair and understandable to me. If I continue to have stability, then that means I am at the end of the line with IL-2. Now, if I have shrinkage but not complete response, (all tumors disappear) then that sets me up for not only a Round 3 but also a Round 4 (AAAAAHHHH!!!) which according to how I count on the calendar, would start about April 19. I also asked how many total rounds will OSU do on a patient. I have heard that it is four rounds, most places. She said they have done up to five *gulp* but that has been rare. So right now we need complete response by Feb 1. Go IL-2 Go! CHOMP THOSE CELLS. Use all of what Ellen calls the "Cancer Killing Goodness" possible, please. I will gladly do a third round if I need to but man, I sure don't like thinking about a fourth. That being said, I will do what I have to do, right?

So for now I am hoping to get my strength back, so that I can work on exercise; that is my next big target. I am looking into using one of the couch-to-5K programs available online to help get me motivated, such as this one. I am not really interested in jogging or running at this time, but at getting in a good walking workout, so I think I can adapt these to help me do that. And if I don't get there in two months, I do it again until I do. My body NEEDS the exercise. My immune system DEMANDS it. I have to do it and I want to do it. I'd go out and walk around the block right now, if making it up the stairs to my bedroom wasn't such a damn hardship right now! I have another motivation, based on recent events that rocked my December. I wrote a long post about all of it during my break week but in my post IL-2 delirium, didn't notice that Blogger was not auto saving, then you guessed it, my hard drive crashed. Haven't had the energy or heart to re-write that post yet, but I will. Lots of ideas are floating around this crazy head of mine but I have yet to commit them to space here. Whether they are worthy of that space remains to be seen.

Home - and loving it

2009-12-06T14:35:00.005-05:00

Well folks, I made it through 9 doses of IL-2 this round, breaking my record of 7. As usual, this experience was not the same as either of the others; it's always different, which is really funny given that the protocol is so unvarying.

We got a late start with doses, in spite of my best attempts to get us there in time for the 2pm dose. We first have to go to Dr. O's office in a bldg about 5 min from the hospital, for bloodwork at 7:30 and to see him at 8:00. We ended up arriving at the office closer to 9 both of the first two cycles. First you have to go through registration where they verify your insurance and info, and give you a patient bracelet. Patient bracelets are de rigeur for any outpatient tests, procedures, etc. but are the same as the inpatient bracelet to at that point I am properly "tagged" to be in the hospital. This past Monday Jim and I pushed ourselves to get on the road early enough to if not be there at 7:30, at least make it close. I drove since I know the landscape a bit better by now, and when we arrived, he took the car to the garage while I went inside for regi, figuring we'd meet up in Dr. O's waiting room on the 10th floor. Much to my surprise, the lobby was full of people, in all of the seating, standing around, leaning on walls, etc. Hm, maybe they are all here for a class, I thought as I approached the reception desk. The receptionist asked me to sign in. At that point I noticed that I was signing at the top of a page, she was holding the previous page, and she was only maybe a quarter of the way through that page. I knew I'd better find a seat because I would be in that lobby a while (25 min in the end). Eventually I learned that most of the folks waiting were chemo patients who were scheduled for treatment on the 11th floor that day. Usually they come in, sign in with the receptionist, and she gives them a bracelet that has already been printed for them, so that they can go directly upstairs. The frequency of their visits allows them to not have to register each and every time they are there. BUT! On this particular Monday morning one of the regi ladies didn't make it in to work. All of the day's bracelets were printed and ready to go, in her locked desk drawer. Of course they couldn't find another key that would open the drawer. Most people waiting were of a similar attitude as mine, thinking "oh well... I'll get upstairs late but they will have heard why and will understand it's not my fault." A few people were freaking out legitimately, and a smaller few were kicking up a fuss, asking to talk to a supervisor, etc. When I finally got into registration, I told the rep that it looked like today was providing them an "Opportunity" to improve on one of their department's processes. He laughed and agreed.

So we got upstairs, then had to wait awhile to get my labs drawn - they do this after inserting my port needles, which helps me to be ready to go at the hospital. After that we waited some more and didn't get to see the doctor until after 9:30. He explained that he wasn't sure whether it would be a good idea to treat me again and had actually consulted with the doc who had started the HDIL-2 program at Ohio State. (Wow! That's kinda cool.) The reason for his hesitance was this... the liver mets were all stable. The ovary met was stable too. But the mesentery met had grown, as he'd told me over the phone the week before. This is where I got confused, as I had never been told about the mesentary met until these last scans were in and it was mentioned in comparison to my September scans. It turns out I have met in the middle of my abdomen, not far from where the omental lymph node was removed in Aug of 2008. So this thing has grown, but, I have also had two immunologic reactions to the IL-2 I've received this far; 1) the hyperthyroid, and 2) my eosinophils have been elevated. He thinks that they are causing the mass to appear larger, when in fact they will cause it to shrink. So this maybe good news after all, and made the docs agree that more IL-2 is in order.

We said goodbye to Dr. O, and made our way to OSUMC, arriving in admissions about 11:30. As usual our wait was short, and were being taken up to a room. For the first time, I got a private room immediately, so I was able to get settled in right away, knowing that we wouldn't be moving again. So for the first time I got to put up the motivational posters that I made prior to my first cycle, along with a beautiful poster that all of the Monahan cousins made for me in secret on Thanksgiving. As soon as I get things on my new phone figured out, I will download a photo I took of the poster in my room, or else take a snap of it here. It is gorgeous and every one of the medical folks who came into my room commented on it, so I got to be proud of our family's kids over and over, even one nephew who couldn't be with us on Turkey Day but who was represented on the poster anyhow.

So then we sat, and we waited. We waited, and we sat. We met our PCA, RN, NP and housekeeper. Jim and I both napped. Why all the waiting? They needed the doctor to sign off on approving the treatment to begin, before pharmacy would mix and send my first bag. Needless to say, that didn't happen in time for the 2pm dose. They couldn't get in touch with Dr. ____ (whoever was attending that day) to sign off on the order. She didn't actually sign it until sometime in the evening, when the 10pm dose was starting to look questionable to me. Oh well.

We started at 10pm Monday and I took 9 straight doses. After about 6 the NP would ask me each time, "are you ready for the next dose?" After dose 9, I felt pretty much like "stick a fork in me, I am DONE." I had rigors 7 of the 9 doses; they weren't as bad as the ones I'd had in cycle 1 because I recognized them coming on sooner than before so I was able to get my demerol sooner. But they still exhaust a person, and I was always worried that they would come on sooner than I would recognize them, or that the nurse would not be available right away, or something. I didn't eat while I was there; I had no appetite and the food was not appealing. Plus, my tongue and mouth dried out quite badly, so when I did taste food, it hurt to pass through my mouth. This side effect was bad enough that I actually asked for Magic Mouthwash which makes me gag just about every time I take it. It helped a little; being off treatment and out of the dry hospital air helped more. I had diarrhea again, though that has improved significantly since arriving at home. So after 9, when the NP said, "do you want to do the next dose? It's up to you" I realized that she meant it. I initially told her okay but then discussed it with Jim and he backed me up on my decision to stop. I kind of felt like I wasn't seeing effects that made me feel like additional doses were being beneficial, instead just an accumulation of the toxic effects. I discussed it with the NP and she was really cool about it, agreeing that we'd done well this time but that there was no issue with not continuing. That was on Thursday afternoon; on Friday morning after having not received 2 doses I was already starting to feel more "with it". And for the record, I didn't receive any Ativan this time; I didn't know I'd gotten it last time until long after my hospital stay. So while I felt 'out of it' and did sleep a lot, I always had the sense of time passing this week. On the other hand, the last cycle is just a blur of me being sleepy and sick sitting up in bed, then me being sleepy and sick laying in bed with nobody letting me sit up. At that time I really didn't understand just how low my blood pressure had gotten, so I didn't comprehend that my desire to sit up in bed could have disastrous consequences. Ah well, it turned out fine and was better that I wasn't aware.

Friday morning; the fellow on the floor told me that they would be working on my discharge papers but I probably wouldn't actually leave until about 2 pm. That was okay with me and Jim. This doctor had made me laugh sarcastically back on Tuesday when we met. She assumed I'd had the Monday 2pm dose and when I told her that I'd started Monday at 10pm, her reply was "Oh, you arrived too late for the 2?" Imagine her surprise when I told her "no, I was here in this bed but Dr. ___ couldn't be found to sign off until that evening." In Your Face, lady! HA! She probably didn't mean anything by her question and I answered her politely but felt a bit vindicated inside, petty person that I am. Then the NP came in to talk, discussed what she'd be giving me RX for (magic mouthwash and a lab draw for Monday). And then we waited... had lunch, napped again, kept being told "we're just waiting for final signoff" and waited some more. I broke down that morning and turned on the TV, the first time I'd done so all week. When I started to hear hub-bub in the hall I realized by also consulting the clock, that they were doing "report" at shift change. It was a bit before 3 and I knew better than to check with the desk at that point. Once it quieted down, Jim went out personally to the desk but everyone ignored him. So weird... FINALLY when I hit the call button to ask about my papers, one of the nurses came flying in with them. He had some excuse that sounded like "the NP didn't sign off and we can't track HER down". Not his fault; I'd met him in December but he never cared for me during this stay. But finally we were on our way, after a slow start caused by me giving Jim bad directions to the pickup area. In the end we arrived in Cleveland close to 8:30 so we picked up the girls from their grandparents' house and headed home.

Jim was again wonderful company and made me feel more comfortable by his very presence in the room. He discovered that a cot brought into the room is actually more comfy than sleeping in the recliner, so he was able to get some good sleep while we were there.

Getting ready

2009-11-28T23:35:00.002-05:00

So, when you're about to go on vacation, what do you do? You pack, which of course involves doing lots and lots of laundry. You clean up around the house, you make lists of things not to forget to take or do. You go to the post office to request to have your mail held, you ask your neighbor to bring in your paper, you arrange to have them put out your trash for you. You make sure the dogs have a place at the kennel and that their things are packed up. And lots, lots more...

And I have done most of these things, in preparation for our trip to Columbus. So how come I won't get to have fun while I am there? If I am preparing for this out of town trip, shouldn't I get to at least enjoy it??? Okay, so it's not a pleasurable experience. But having another set of scans in two months that read "stable" or better, will be. So I guess we'll go after all.

I've been trying to make up an itinerary for the girls' grandparents, who will be hosting them for both weeks we're in C'bus. I had Rebecca review the cafeteria menu so we know which days she'll buy and which days she'll pack. Of course, payday falls on Monday the 30th. I need to figure out what needs to be paid from this paycheck so that I can have Jim do that from his laptop... it is usually something I do on payday or right after but I know I won't feel up to it. And then I will have to do it again for the next pay, which falls during my second cycle of treatment. That one will be a little bit tricker, because while Jim's check is the same, mine will be cut by 30%. We have a good short term disability plan at work; it pays 70% of your salary after an initial waiting period of one week, which you use your PTO (paid time off - all of our time is in one pot that we use for vacation, personal, sick and waiting period days) to cover. Luckily for me, this leave is considered an extension of my leave in September, so I don't have a 40 work hour waiting period to fulfill again. But... I also no longer have a nice bank of unused PTO to bridge the gap between the STD pay and full pay. I used to have a nice balance in my PTO bank all the time. During both of my maternity leaves, I was able to use PTO to bridge most of my unpaid time, even for the FMLA weeks I took after the medical part of my leave ended. But then I used a week plus bridging in August of last year when the first met was resected. Then in February I used another week... I was lucky to be able to come back to work after only a week but there went 40 hours. I took a week in the spring and one in the summer as planned, to spend time with Jim and the girls. But then all the trips to Columbus for pre-IL-2 testing ate up a lot of what was left, and I used 40 hours for that waiting period when I first entered the hospital. The rest of it went to bridge me but it wasn't much and I had one seriously sad paycheck. Since I was back to work for just about 3 full pay periods, I was able to build up a tiny cushion, but had to use 8 hours of it for Thanksgiving, and the rest will go toward bridging again. Christmas and probably New Year's Day will fall while I'm out. Since those are designated holidays, guess what? I'm supposed to take PTO for them. So there's two more holes in the payment schedule. *sigh* It's certainly not the end of the world, and we'll figure a way through it. I would probably be a bit less stressed about it if we weren't facing the end of pay for Jim at the end of January, should he still be jobless at that point. I keep saying that January is when he will find a new job; that God, or fate, or whatever, planned this so that he could come back to Columbus with me, but my confidence in that assertion is still a bit shaky.

On the other hand, this treatment is supposed to help lengthen my life and keep it at the quality of life I have been enjoying, that is, fully active and without any medical restriction. And that, my friends, will be worth any hand-wringing about paying some bills.

Act Two

2009-11-25T22:31:00.004-05:00

I headed down to the state capital last week for my 8-week post HDIL-2 scans. I was scheduled to be there for 3 days, since I needed to have 3 MRIs and the radiology folks said that my kidney could only handle one dose of Gadolinium per day. While not thrilled about having to be away for 3 days, (and I wasn't about to commute there and back more than once) I planned to make the best of it, staying at the Frank B&B (my friend Ellen's house) and using a laptop to work from her house. That way I could keep up at work and not have to use up the precious little paid time off I've earned since returning to work. The plan was to drive down on Monday evening. Late Monday afternoon I got a call from a nurse at Dr. Olencki's office. She wanted to know if I had wanted to schedule my appointments this way. After a bit of discussion, it was determined that I could have been hydrated via IV so that I could have multiple doses of Gadolinium... but trying to reschedule the appointments to be together would probably be impossible at this late date. The nurse promised to talk to Dr. O and call me back. The decision was made that a pelvic MRI, scheduled for Thursday, could be changed to a CT scan, which could be scheduled concurrently with the chest CT I was already having on Tuesday. So I was able to shave a day off the trip.

On Tuesday I had the MRI of the brain first. Afterward I was sent out to the waiting area to drink my berry smoothies before my CT scans. The room was full of people of all ages, from elderly folks to families with children. A TV on the wall had been broadcasting Dr. Phil when I went in for the MRI. Now Oprah was just starting. And she was interviewing Jenna Jameson. Talk about uncomfortable silences in the waiting room... it was pretty funny, though. She and Oprah discussed her book, titled "How to Make Love Like a Porn Star" and her life. There was one family I was embarrassed for, as included in their group were two tween kids there. However, they were siting basically under the TV and seemed to be ignoring the TV altogether. I wasn't all that interested (and she was pretty orange-y toned, not sure if that was from being over-faketanned, or from the TV) so I read magazines instead.

I came back the next day for an abdominal MRI, and the techs poked my veins several times to try to get an IV line before finally deciding to use my Power Port. Finally! It got it full use, LOL.

One of the techs told me there should be results on Friday. On Friday afternoon I called to see if they knew anything. I talked to one of the NPs who read what she could from the reports, but said that Dr. O hadn't weighed in on them yet, nor was she able to locate him. We talked about the fact that I wanted to know as soon as possible if I was going to be traveling back to Columbus. She promised to call me on Monday. On Monday, I wanted to call her first thing, but held off. Finally mid-afternoon I called. The woman who answered said to me somewhat snottily, "she's been trying to call you all day!" Odd, that... my cell (which I had given her the number for) was on and working all day. Plus I know they had my home and work numbers. The woman took my cell number again and told me she would give the NP the message. I was pretty angry at this point... feeling like I was being made out as the guilty party by the woman on the phone. When I got home I checked the answering machine in case there was a message there that Jim hadn't heard, but there wasn't.

On Tuesday morning, we got the girls ready to go to day care; Rebecca didn't have school but was going to day care for a "play day" mainly because we had to go to her school for her parent-teacher conference. I picked up my purse and pulled out my cell, where I saw that I had two voice mails. Both were from Monday evening, one from the NP and one from Dr. O. DAMN! I have a new phone and had changed the ringtone to beeps because the tone I had been using annoyed me and I haven't had a chance to download something I would like. Dr. O said he would try to call me first thing in the morning.

Jim and I went to the conference, where I got to meet both of R's teachers. She has two teachers, who job share; one works until lunch and the other takes the afternoon classes. The conference went wonderfully; they had no weaknesses to discuss but lots of praise for our girl. We were both very proud. I crack up when talking to teachers though, because they always talk about how mature R is, and never seem to believe that she can be a very silly childish nut at home. These teachers did believe it and laughed. I'm glad she saves her silliness for at home. As we were wrapping things up my cell rang so I went out to the corridor to take the call.

It was Dr. O, as promised. He told me that all of my mets are stable, so there was no growth of any of them, and that there were no new nodules. When I had talked with the NP, she had mentioned that the abdominal MRI mentioned a nodule in a different region of my liver, but that the radiologist interpreting the MRI noted that the region the nodule was in may not have been scanned in September. There is something in my mesentery, which the pelvic CT mentioned as having "slight growth". The NP had told me not to be concerned since Dr. O had not mentioned this to me previously, and likely it was something he was unconcerned about. That turned out to be the case. He mentioned it to me but said something about some kind of blood cells likely causing the growth, so he was disregarding it as a trouble spot. I didn't really catch what he said in full, so when we see him on Monday I plan to ask again and write everything down. At any rate, he told me that he wants to see what another round of IL-2 will do for me. We agreed to see each other on Monday, and signed off.

Wow. When I had first talked to the NP, I was happy that there was no mention of a lot of new growth, and that it sounded like everything was stable. A part of me was disappointed, hoping for shrinkage or the magic words "complete response", as remote as that possibility can be, especially after just one round. But the more I thought about it, the better I felt. Lots of people get IL-2 and have growth continue. I didn't. Right now here is what I am picturing, which I told to Rebecca this morning:

The first round of IL-2 has knocked the "spots" to the ground, off their feet. They are dazed and confused so they can't eat or grow. Now we're going to send in a bunch more T-cells to smother the spots and make sure there are no tiny cancer cells floating around! I told R that I can't promise anything but that is what I hope will happen. She liked that explanation and I hope it will help ease her pain at our leaving her and her sister for two one-week periods next month. I told the girls about it on Tuesday evening. Being just four, Carly just kind of brushed off the news and went about the business of playing. Rebecca, on the other hand, was reduced to tears. It's hard on all of us, and especially this time of year, but getting through this will make Christmas all the sweeter for us.

So the schedule is: Jim and I will go to Columbus on Sunday (11/29) and stay at the Frank B&B, so that we can be at Dr. O's office by 7:30 am. There the nurses will place the needles in my port and take blood, and I will meet with Dr. O. Then, as usual, we'll drive over to The James, get admitted and get a room. If we get settled in time, I'll be able to start with the 2pm infusion. The question in my mind is, will I start in a semi-private room and then move, like I have done the other two times? Probably, though I am hoping not. I want to get settled while I feel good, put up my photos and inspirational signs that I made last time but never put up... not that I would have really seen them in my fog last time. But, whatever will be, will be, and my sweetie will be with me so he can tape up posters for me. :-)

I should be home sometime that following weekend, and recover at home for the next week. Then we will return to Columbus on 12/13 and repeat the cycle. Barring any serious complications, we should be home the weekend before Christmas. I've done most of our holiday shopping, and am hoping to get it wrapped in the next couple of days, but still have more to do. Somehow what needs to get done, will get done, and I know that if I don't have energy to do some things, as long as I can communicate them to Jim, he will take care of them for me.

Bedside notes

2009-11-10T16:50:00.010-05:00

Carly likes to climb into bed with Jim and me from time to time. Sometimes it will be several nights in a row, then she'll go a few weeks without a night time visit. When she was a toddler it was a pain because she would move around so much and end up perpendicular to us; she would be the only one sleeping comfortably on our king size bed.

On a recent Sunday morning, she came in shortly after dawn. It was the first morning after the time change so I think her bio-clock was a bit confused about the light peeking in from the edge of the blind on her bedroom window. We cuddled a little and fell back asleep, woke up and cuddled a bit more then dozed off again. When I awoke fully and sat up, I happened to look through the bedroom doorway. I could see Rebecca sitting at my computer desk in my office, writing on a square of paper from a memo pad I keep there. As I turned to get off the bed, I noticed two more squares of paper on my nightstand. As I picked them up, Rebecca walked in, gave me the paper she had just been writing on, and with a forlorn look, left the room. These are the notes she left:

I didn't know whether to cry, laugh or roll my eyes. So I did a little of all three, inwardly. To Rebecca I said that she can come and cuddle any time; I was cuddling with her sister because she had come into the bed. Rebecca doesn't visit us at night anymore - why would she when she has a full size bed to herself? But she now knows that she has a standing invitation.

Weekends too short

2009-11-08T23:16:00.002-05:00

Another busy one over with too soon, and too many of my plans unfinished... or unbegun!

On Saturday we attended an ice skating show, which was a benefit for the Scott Hamilton CARES initiative. Through CARES, many lives have been impacted positively through its 4th Angel mentoring program, which matches new cancer patients with survivors to provide information and the kind of moral support that only another cancer warrior can provide. They also fund research. Young researchers have a hard time getting funded because get funding, you have to have already gotten funding. It's kind of like the old employment conundrum - you need to have experience to be hired for the job you're applying for, but nobody will hire you to give you that experience. So CARES funds these new researchers, which gives them the credibility to successfully apply for additional grants. This is so important for all of us who are touched by cancer or who may find ourselves in that place in the future. The initiative's latest project is a new website, chemocare.com, to help patients and their loved ones through the chemo experience. What a great idea... and a resource that is definitely needed.

I have long been a fan of Scott Hamilton; my mom was a huge figure skating fan and I would watch events with her. When he was diagnosed with cancer I was really sad for him, and then really happy for him when he was declared cancer-free. I had not been to any of the previous shows, partly because I miss having my mom to share them with. But this year, it was announced that at age 51 and after over 5 years off the ice, Scott himself would be performing. So I got tickets for us and invited Jim's parents to come.

We all really enjoyed the show, even the girls, who have never really watched figure skating for any length of time. Scott did great on the ice - he did fall once but later did TWO back flips on the ice. Pretty damn good for any skater, much less someone of his age. When he spoke after the show, he talked about how he needed to get in shape to do this, as he had let himself get out of shape. He has two young sons, and he has decided to continue to work on maintaining and improving his health, and continuing to perform in the annual benefit. This was a good message for me to hear at this time. I have had in front of mind my need to get regular exercise. I really want to walk more, to the point of really getting some mileage in, and who knows, maybe someday even jogging or running. My dad would smile at that, since he was a distance runner who only took it up in his 40s because a coworker invited him to join a lunchtime running group at work. So I seriously need to make the time for some walking. I should be able to get in three weeks' worth before my possible return to Columbus; if I have to take a break from it for more IL-2, all the better; if not, then I will be getting in shape for whatever systemic therapy is next for me. I want to be the healthiest cancer patient I can be, so I need to cut out the excuses and get my butt moving.

So that was Saturday, enjoyable and inspirational. On our way out of the arena, I ran into my friend Deb and her family. I believe I have mentioned her here before... she was my supervisor for two periods of time, and has been a wonderful friend and mentor over the past almost 20 years. She is currently on long term leave from work because the breast cancer that invaded her brain two years ago is still growing, despite gamma knife surgery and two neurosurgeries, as well as radiation treatments and a brief time on a chemo trial that didn't help her and made her too sick to continue. The cancer has now spread to her abdomen and her husband told me this week that she has something in her arm that they will radiate. She was at the show on Saturday, even though in a wheelchair, with sunglasses on since her vision has been severely compromised by the brain tumor. But she gave me a big kiss and pronounced me 'fantastic' when I came up to see her. I am so sad for her and her family, and so very angry that this monstrous disease is taking her away from us. She is one of the very best people I have ever met, and she had a lot of life left to enjoy... having that cruelly taken away is beyond unfair. So for Deb I need to work harder on making myself as healthy and fit as possible, too. She has always been an inspiration to me, and I want to be worthy of her praise of me.

Today (Sunday) our little family took on a secret assignment, doing something I can't talk about now but will be able to by the end of the year. It's nothing huge or momentous, just something that I have wanted us to do for a while and finally got it going. We also did some errands and got home in the later part of the afternoon. I was determined to get the front flower bed cleaned out, and annuals pulled, while it was nice weather. And it was soooo nice today, temps near 70... I worked outside in walking shorts. The girls came out with me and were a big help - while I raked leaves, they pulled the dead flowers and Rebecca clipped the dead blossoms off our hydrangea. We then cleared leaves off our deck and I was able to get the cover on our patio set for the winter, all tied down and hopefully secure for the season. It was a great feeling to get it all done, but man I was tired afterward. Either I am really out of shape (yes!) or I am not yet at 100% recovery from the last IL-2 and resulting hyperthyroid episode... or perhaps a combination of the two. But no matter, it's a good kind of tired and the girls and I had fun while we worked.

Now it's time to start another week of work and obligations, then next week I'm off to Columbus to be radiated and magnetized, with the big reveal soon to follow... response to the IL-2. I want to know NOW so I can know what December will look like for me and the family. But I want my immune system to continue to do its magic if indeed that is what's happening, so I can wait another week so that we give it optimal time to work. I feel hopeful, but I know that statistics aren't in my favor, so I will be okay if I don't get good news. There are fortunately some choices now for a next step, something that couldn't be said just five or so years ago for RCC. But with a bit of luck, maybe I won't need to make any of those choices.

What a weekend...

2009-11-03T20:49:00.003-05:00

It was a whirlwind of activity this past weekend at our house. On Friday night the girls were invited to a Halloween party. Jim and I took the opportunity to go out to eat by ourselves. I had used a serious discount code on restaurant.com for a nearby restaurant that we'd never tried... I got a $25 certificate for $2! We really liked the food and will go back even without a GC. The only annoyance was the noise level... being Friday they were doing a perch dinner as their special and I think every older couple on the west shore was there! For dessert we brought home a slice of killer chocolate cake, which we all shared... very rich and fudgy.

On Saturday morning we went to our niece's birthday party - she is an actual Halloween baby. The party was held in a meeting room at a library close to their house. The kids had a lot of fun and the family got a chance to catch up and chat. After the party we relaxed a bit, then headed to a neighbor's house for our little development's Halloween parade. One of the families used to organize this event each year, along with a 4th of July parade, but now that their kids are teenagers, their family has "outgrown" the event. So another family, one with small kids, stepped in to organize. We all trekked around the 1/2 mile block, kids in their Halloween regalia, back to the organizer's house. There we all went inside for pizza and snacks. It was a perfect way to get some actual food into the kids before Trick or Treat began. The parade was at 4 PM, and ToT started at 6, so we had just a little time at home to finish getting ready.

And then we were off... I walked with the girls while Jim handed out treats. We went farther than we ever have - to the corner on the north end of our street (we are about 12 houses down) and most of the way to the east end. We probably would have covered the whole street if it were up to Rebecca, but Carly was getting tired and frankly, so was I. I weighed one of their bags at home and it was almost 3 1/2 lb... way too much as it is! There was about a half hour of 'official' ToT time so Carly stayed at the door to assist Jim while Rebecca sat at the kitchen table organizing her loot. She was proud of herself - one of the neighbors handed her a bag of Skittles, while asking her if she likes Skittles. She doesn't but very happily and politely said yes and accepted them. (Mommy likes Skittles so all is not lost!)

On Sunday Jim and I had hair appointments - our salon is a long drive, but we keep going there because we can't quit our stylist (Hi Kim!). From there, Jim dropped us off at the party center where we were meeting Grandma for the American Girl fashion show. (It was a charity event for the cancer center at the competing hospital system here in Cleveland... shhh... Though if these funds help them to find some cures, we all benefit.) Last year Rebecca and I went with Grandma to the show; this year she decided Carly was big enough to go. We had a nice time there, though both girls were disappointed that we didn't win any raffle prizes. (Last year Rebecca was lucky enough to win a Bitty Baby with a ton of stuff.) One of the new dolls this year is named Rebecca Rubin and our Rebecca really wants her. They were raffling two of them at the show, then had a quickie raffle during intermission for another, but no luck. Grandma advised R to add the doll to her Christmas list.

However, it won't matter because a brand new Rebecca Rubin is sitting at my sister's house waiting for Becky's birthday! This year R's birthday falls on Thanksgiving Day. Last year we celebrated her birthday at Thanksgiving dinner at Jim's brother's house. It was fun and she enjoyed the dual celebration. She told us last year that she'd like to celebrate her birthday at Turkey Day again. However, times have changed. We had a birthday party for Carly last month at Chuck E Cheese and let her invite her classmates. We'd done the same when Rebecca was four so it worked out nicely. Everyone had a good time at the party, except Rebecca, when she stopped playing games and realized that her sister was the center of attention. It didn't help matters that some of the gifts Carly received were things Rebecca herself wants. There was much wailing and gnashing of teeth on her part for a couple of days after the party... mostly in the vein of "she gets everything and I get nothing." Therefore, Rebecca decided that she wants a family party separate from the holiday, and that she wants to have it at Donato's pizza, where they have a party room we used last year for Carly's family party. So the girls and I went up the street to our local Donato's and reserved the party room. I had to pick either the weekend before or after her birthday; the weekend after is not feasible if I will be returning to Columbus for round 2 of IL-2. So we picked the earlier weekend. I told her we'd get some balloons, etc. to decorate. And today she called me at work (she had the day off from school, ostensibly for Teacher development day but really because it's Election Day I think) to ask if I would help her to make a birthday crown for her party. Carly got an inflatable crown at CEC so of course sissie has to have a crown too. My dear, dear girl...

Both of them are so precocious and crack me up all the time, when they aren't bickering and smacking each other, that is. Seriously, I need to keep a notebook or recorder with me to log these gems so I don't forget them!

Yah, I'm lame...

2009-10-30T00:28:00.003-04:00

... since I haven't been here in far too long. But no news is good news, I guess. I'm right back in the swing of things at work, and busy documenting the stuff I didn't document before I went on leave, as well as clarifying documentation that wasn't as clear as my coworkers needed it to be. If I am lucky enough to go back to OSU for round two, I will hopefully leave things in better shape than I did in September. It's not that I left things a mess, but I like to make it as easy as possible for them to keep up with my assignments.

Today one of my coworkers gave me a file of some info she thought I should have as backup, which is a good idea. She commented that when she was looking for similar stuff while I was on leave, she had a hard time finding anything. Later when I was looking for a file I realized just how crazy my file drawers look to other people, and indeed they are a mess. I made a mental note to spend a bit of time tomorrow getting rid of stuff and reorganizing a bit. So I found it amusing that tonight Google Reader recommended The Clutter Diet Blog and the entry that I opened to is titled "Oh, Goody! It's National Clean Out Your Files Month!" A sign for sure! The author is talking home files as well as work ones. Well, my home files are in a very sorry state, and the last two days of NCOYFM would only put a dent in what needs to be done. But I will now DEFINITELY get to work in my office tomorrow. I only have two file drawers, for cryin' out loud, so it shouldn't take that long to make it much nicer. So, that is my goal and pledge to you, my readers... that I accomplish something with this little project.

Lately I have actually had more energy to work on decluttering in our house, and on keeping up with house tasks in general. At times I will watch myself moving from one chore to another and think, wow, who is this fairly efficient person who hasn't retired to her PC yet? Real progress has yet to be made, except on our kitchen table, which was a paper/toy/odd-item-that-nobody-can-identify-the-source-of magnet. I got it clear down to the wood, which was then cleaned with Murphy's Oil Soap and we enjoyed our first clutter-free meal as a family in a while. There has been a bit of backsliding over the past two days but I plan to nip that this weekend. I will admit that the fair amount of stuff that was Jim's went into a box, but he dealt with that graciously. I have this crazy goal to get our first floor common areas all tidy enough that if someone drops by unannounced, I won't die of absolute mortification. Sadly that goal is a bit off, and I am kind of embarrassed to be admitting this here, but if I'm not going to be honest, then this isn't much of an outlet for me.

In a prior post, I mentioned that my bout with hyperthyroidism caused me to lose quite a bit of weight. As my appetite returned, I figured some weight would come back, and it did, about 6 lb or so. Even though I wasn't surprised, I was a bit dismayed, as the weight loss was a wonderful side effect. I now have several pairs of work pants that I can no longer wear. And I have been able to wear several items that looked horrible on me not long ago. So in a typical for me head-in-the-sand reaction, I avoided the scale for several days. I think I was afraid that seeing it go up would dishearten me to the point that I would give up altogether on trying to eat more healthfully. This morning I finally bit the bullet and climbed aboard the Tanita. Lo and behold, no horrible news awaited my downcast eyes; in fact great news did, as I am a pound down from my lowest weight of two weeks ago. AWESOMENESS! It would appear that mealtime portion control and once again quitting nighttime snacking (mostly) has paid its rewards.

So, this energy that has arrived in the wake of my incapacity has been good for me in several ways. I want and plan to get some exercise going on a regular basis. I can walk at lunchtime at work, or on the treadmill in our basement that right now holds boxes, or do a walking dvd. It is hard with my schedule to have a block of time to devote to exercise, so for the time being I am going to have to squeeze in little bits of it here and there.

My diet itself is more under my scrutiny than ever before. Several people have recommended the book Anti-Cancer: A New Way of Life by David Servan-Schreiber. He is a doctor and researcher who developed a brain tumor, and decided to research how he could boost his immune system to fight the cancer. I have owned the book for a few months but only recently picked it up to actually read, in my ostrich way. I have only read the first few chapters but have found it interesting reading. At this point I am not up to the food chapter, but I have skimmed it and while the information in it is not new, it resonates more than ever; maybe I am becoming more ready to embrace change? Maybe I am also scared that if I don't make some changes, I will certainly regret those decisions as they impact my health? Maybe a good dose of both. And I am certainly aware of the impact on the girls of me modeling healthy eating habits. Not that they may take hold any time soon, what with the utter pickiness that goes on at mealtime! But I will keep trying; I remember hating as a child a lot of things I like to eat now.

Back in the swing

2009-10-21T21:28:00.002-04:00

I started back to work on Monday. It felt odd to make the commute but my car and I remembered the way. I got lots of warm greetings from my coworkers, and my supervisor gave me a bunch of orange and red-and-orange roses, which were just beautiful. Getting back in the groove of work didn't take long at all; by the end of the day Monday it felt pretty much like I'd never been away.

Tuesday I worked in between trips to the Clinic for my thyroid testing. I had to visit Nuclear Medicine in the morning to get my dose of radioactive iodine. To my great relief, the iodine was in capsule form... no poking my veins! I had to return four hours later for the scans themselves. So I went back to work for a couple of hours. After the scan, I had to go to the endocrinologist's office, in a building across campus. The nurse doing the preliminary questions made me a bit nervous. She said, "If the doctor decides to send you for a treatment today, we will give you a pregnancy test first. Otherwise you'll get over there and they will send you back for one." Huh what? Where? She explained further that I might have to go back to Nuc Med for a radioactive iodine treatment. She left me on that note and then the appointment scheduler came in, apologizing for something but I had no idea what she was talking about. As she talked, I figured out that she had given a sheet of instructions to another patient who had an appointment for testing at Nuc Med, only the sheet was outdated and had the wrong location code on it. Apparently the patient had called the chairman of the Endocrine Institute to complain. Ouch! Fortunately, I wasn't that patient, and I had looked up the appointment in MyChart (the Clinic's online medical record system for patients) and so I knew that Nuc Med was in a different location from before.

As I sat there shaking my head, the doctor came in, with very good news. I had a case of thyroiditis, which has pretty much resolved. By Friday my T4 had dropped from >7.8 to 2.0, so by now it's likely further dropped into normal range. She instructed me to stop taking the beta blocker medication and said that she would like me to do repeat blood work in a month, but otherwise didn't need any more follow up with her unless I had another problem.

So, Very Good News! I was extremely relieved. I came home and pretty much collapsed, partly from the relief, and partly because I had done a TON of walking at the Clinic... the parking is NOT close to Nuc Med, so I hiked a fair bit... twice. But it was worth it to know that nothing sinister is going on in my neck.

Imelda's closet

2009-10-13T09:09:00.002-04:00

You know how they say that when something bad happens, you are waiting for the other shoe to drop? Well, I have decided that my family must be residing in the closet of Imelda Marcos, since shoes just keep dropping.

Since I have been home this time, my appetite continued to be non-existent. I have also been dropping weight like crazy - like 27 lb in 2 1/2 weeks. I can definitely stand to lose that weight and then some, but it's too fast. Plus I have been feeling nauseated all the time, and have had to force myself to eat a little bit. The not eating resulted in weakness, which then made me more nauseated, so it has been a vicious circle.

Not that I have been up and about much... getting up and standing for any period of time was causing me to feel lightheaded and dizzy. One night last week Jim suggested that I take my blood pressure reading - genius! I did so and it was quite low. After that I quit taking my hypertension medication so that it wouldn't go TOO low. And my pulse has been high, running in the 110s and 120s at rest and up to 130 if I had just been up and about.

I tracked my bp readings all day last Wed and called Dr. O's office on Thursday. Lori, 'my' NP was not available, but the NP I spoke with was very helpful. She asked me a ton of questions and was very concerned about my rapid weight loss. She recommended trying to eat small amounts of food every couple of hours, and wanted to have a bunch of lab work done. She offered to fax an order somewhere here in Cleveland, but instead I wrote down all of what she wanted done, and emailed the list to Dr. Rini. He had his nurse enter the order so I was able to go to have the blood drawn.

On Friday I was still waiting for results when Jim called me from work. He had bad news - he'd just been informed that he was laid off from his job. He couldn't spend time giving me details since he had to clear out his office, so I had no real information about the situation until he got home. I was stunned by the news and then really upset. What happened was that some of the work his group does, to do with data security and storage, is being outsourced. So it was decided that four people are no longer needed in his group, and Jim had the least seniority of the four. Luckily they are being generous with severance pay, and he has leads out already, so I am trying to tell myself that something better will come of this. It's been a big blow to his self-esteem but hopefully he'll pull himself out of it soon.

While I waited for him to come home, I got a call from Dr. Rini's office. They had my bloodwork results and my thyroid was off. I have been told since I was pregnant with Carly that my thyroid has been low-normal and that eventually I would be hypothyroid. So imagine my surprise when I was told that my number was extremely high! They made me an appt with an endocrinologist for this coming Friday, 10/16, the first they could get. And they sent my results down to Columbus along with information about my appt.

I went online to look up hyperthyroidism and wasn't sure what to think... one of the causes could be a nodule, either benign or cancerous, on my thyroid. This was an upsetting notion to me, of course. My mother in law had hyperthyroidism as well, and told me that it can also be caused by a big stress to the body, which I definitely have had. I understood that but still felt nervous... then one of my kidney-onc list members told me that HDIL-2 can cause thyroid changes. So let's hope that is what it is.

By Saturday I was feeling worse... really shaky on top of everything else. Jim was really concerned so we called the Clinic's advice nurse line for help, late Saturday afternoon. The nurse was very kind and helpful. She agreed that it looks like hyperthyroidism is my problem. According to my symptoms, she recommended we go to the Emergency Room at the Clinic - she thought maybe there would be an endocrinologist on call so it would be better to go there than to one of the closer community hospitals.

So, we packed up the girls to have a sleep over at Grandma's and headed downtown. We got to the ER at about 8:30 pm. They told us they were "slammed" and the waiting room was busy. We were called back to a room at about 10:00 pm and the true waiting began. The first person to see us was a resident from Neurology - must have been on an ER rotation. He asked me what was going on, then decided he should go read my history first. Took him a while to come back; Jim commented that after reading everything, his head exploded! But he did return and said that they would draw blood. After that it's a dull blur; I told him that I have a medi-port so I didn't want an IV or blood draw from my arms. Next thing I know, a clinical tech comes in to do venipuncture. She went to tell the nurse about my port. Then another tech came in to do venipuncture. Finally the nurse was free and she was wonderful. She took care of everything efficiently and with kindness. In the mean time we had been told that they were going to give me a beta blocker to bring down my pulse. Then I was told I would be hospitalized until an endo could see me. This upset me a lot - how come the day before I was basically told I would be fine for a week until I saw the endo, and now I needed to be admitted? After consulting with hem/onc and endo, it was decided that the beta blocker should help me enough to go home. So the nurse infused my line with a beta blocker and sure enough, we watched my pulse go down right on the monitor. The nurse said she'd be back shortly to check on me but then wasn't. At some point around 3 am Jim noticed that my IV fluids bag was empty, so I hit the call button. It took like 10 min for them to answer!!! I have never had that happen. I told them I needed my nurse because my IV was done and was told "no problem". As of an hour later, she still hadn't appeared. I hit the call button again, and again 10 min later. It was incredibly frustrating. What if I was in that room alone and had coded? At some point they replied to my call, by shutting off the call light!!

The 4:00 hour brought some activity. I had sat up at this point and noted that my pulse was back up to 120 on the monitor. Then someone came in and said they were preparing my discharge papers. What the hell?!? The supervising doc came in and explained that because my pulse had initially gone down, the beta blocker was successful. They would be giving me a prescription for a higher dose of beta blocker to take at home. She also explained that our nurse had been tied up with a particular patient situation for a couple of hours. We told the supervising doc that we weren't upset with the nurse, but with the fact that nobody answered the call light. She agreed that was a problem and noted that there were several issues that had come up that evening that would need to be addressed.

My nurse came in to take the line out of my port, etc. and was extremely apologetic. We felt bad for her; she was wonderful with us but we understood that she couldn't be in more than one room at a time. However, this is why I LOATHE going to the ER. Bleah.

We finally got out of there at about 5am and went home to sleep. The girls were brought home by Grandma about 11:00, after PSR, so I didn't get a lot of sleep.

I started the beta blocker prescription that evening and it has helped a lot. As of this morning, my pulse was 78 and my bp was 105/67. And, I am getting my appetite back. Now, if I can get my energy and stamina back, I will be ME again.