Wednesday, October 19, 2011

Guest post - Finding the Right Cancer Support Network for You

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:


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


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.

Tuesday, October 11, 2011

The Ballad of Tom and Jerry

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.

Tuesday, October 04, 2011

Still kickin'

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:


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:

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'...

Thursday, August 25, 2011

Where do I begin?

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 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:

  1. 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
  2. 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.
  3. 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!

Thursday, July 28, 2011

Relay for Life

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

Sunday, June 19, 2011

First Holy Communion

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!

Thursday, June 09, 2011

Playing catch up

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.

Tuesday, May 10, 2011

Surgiversary number 6

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.

Thursday, March 31, 2011

The old switcheroo

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.

Thursday, March 03, 2011

Is it spring yet?

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.

Tuesday, February 22, 2011

Brief check-in

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...

Monday, January 24, 2011

Still here!

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.