Wednesday, July 29, 2009

The girls

I realized later that in my last post, I didn't come back to the subject of what the girls know, understand, have been told, etc. about my situation. It came up in the car on Saturday, and was a fairly natural conversation. Still I have not read the book about talking to the kids, but I think we did okay. I ended up explaining that I have two new "spots" according to my last scans. Since there are two, the doctors don't want to do surgery, so they want to give me very strong medicine instead to try to make the spots smaller, or go away. The girls understood this pretty well. Then I explained that I might have to go to Columbus for a week or two in the hospital to get a particular strong medicine that I can't take at home. Carly didn't get it, which is understandable, and okay. Rebecca was upset about my leaving her and the family for a week. "But I don't WANT you to go to Columbus, mom!" "Well sweetie, if my doctors decide this is the best thing for me, I have to do it, but you can talk to me on the phone every day." "Can I visit you?" "Probably, we'll figure that out later." More like probably not, but we'll cross that bridge later.

This morning we were discussing my spots as we got ready for school and work. The subject came up because I had my final appointment at the wound healing center - I am healed! I still need to wear the special bandage if I will be sitting a lot (like at work) or sweating, etc. but don't have to wear it at night anymore. This is to keep the skin from macerating until it heals more completely. The hole is closed but the doctor said that the skin is not at 100% yet. But it will be... At any rate, somehow we decided to name Mommy's spots. The ovary spot is of course a girl, and the liver spot a boy. Rebecca decided the ovary spot's name should be Sabrina. Carly said the other spot should be Joey, which I vetoed. If one of the girls had been a boy, he would have been named Joseph Thomas after Jim's grandpa and our dads. So Joey is a special name to me.

When I picked the girls up this afternoon, Carly had a cute little caterpillar figure in a little nest, that they had put together today. She told us that the caterpillar's name is, you guessed it, Joey! That was okay in my book. I ran into one of her teachers in the parking lot. The teacher told me that Carly had a name for her caterpillar right away, while the other kids had to think about it. I didn't go into the back story with her, but I got a good chuckle out of it.

Our other good news tonight was that our new patio furniture was delivered today. So we got to eat supper outside for the first time this summer! I am happy with the set, and made sure to use the fancy cover we had bought for it to make sure it stays nice. The only problem was the bugs. Now, if you were my new PartyLite candle holders, with citronella candles purchased to accompany, where would YOU be? Actually as I am writing this I think I remember exactly where they are, so we can use them next time. Now I just need to get our power washer unearthed from the garage and set up so I can clean the deck; it looks worse than ever with something new on it. I had hoped to get this done before delivery day, but it wasn't to be.

I have a date

And Jim is coming with me. Kinky! Ok, maybe not. The date is on 8/24, in Columbus, with Dr. Olencki at James Cancer Center, or, The James. I always thought my Jim was The James but the title has already been taken. And if you are an Ohioan, and know anything about OSU, "The" is an important word, since after all, it is THE Ohio State University.
The backstory... we met with Dr. Rini on Friday. In the morning I got a call from my gynecologist, letting me know that she had talked with him about my case, and had also consulted with a gyn-oncologist in her department. The consensus was that the abnormality in my ovary is most likely RCC and so they did not feel it was in my best interest to have a biopsy of it now. If systemic therapy were to cause my liver met to shrink but not my ovary met, then a biopsy would be indicated. I am in agreement with this thinking; my instinct tells me that while it is possible something else of a sinister nature could be happening in my ovary, it just feels like it's RCC.
In the afternoon I trekked down to Taussig to meet with Dr. Rini. Jim and my sister came with me, so I had two additional pairs of eyes and ears for the appointment. Dr. R explained what he believes to be my best options for systemic therapy at this time; they are the two options I described in my last post. There is nothing that pushes one of the options ahead of the other to a great degree, so deciding may be difficult for me; after all, I am a Libra and we're famous for our indecisiveness.
So then I presented Dr. R with the $64,000 question - what about HDIL2? He was absolutely fine with me investigating HDIL2, despite the concerns of some of my RCC friends that he might not be. We talked about the fact that the treatment has a low response rate, but he feels I am a candidate so it is worth a shot. W then discussed the "where" part and his two recommendations were Ohio State University, or Beth Israel Deaconess Medical Center in Boston. He said that if it were him or a family member in my situation, he would go to BIDMC. However, he did note that OSU has a good program, while BIDMC has a bigger national and international reputation. Dr. R said he'd be happy to contact Dr. Olencki at OSU or Dr. Mc Dermott at BIDMC and to get my records to them if I made an appointment. It felt good to have his support; I acknowledged that the likelihood of the HDIL2 working is not high at all, so most likely we'll be back to our original plan. But I feel like I have to try it, and now is the time, if I am going to do it.
I spent the weekend doing a lot of thinking, soul searching, talking with Jim about it, as well as some new good friends form the RCC community. We decided that going to OSU feels right for us, for a few reasons. The two main ones in my mind are the fact that it's only a couple of hours away by car, so the disruption of our family life will be lessened; that is huge to me because I HATE the idea of being away from the girls and throwing them into this turmoil. (More on them later) Also, Dr. Olencki is a former Cleveland Clinic doctor, which comforts me for some reason! Probably because the specialists that I have encountered at the Clinic have mostly been top-notch. Anyhow, in my heart I feel that if HDIL2 will work, it will work regardless of where I receive it. My Boston-area friends all deserve a big hug and Thank You though, because many of them emailed to offer to visit, help with the girls, or do anything I needed done if we went to Boston. These are all, except one, women whom I have never met in person... they are friends from my various email "mommy lists". We all read and hear stories about the evil Internet, luring kids, scamming people, and so on. But the REAL power of the Internet, for me, anyhow, is in connecting with people, finding people with similar interests or circumstances, who grow to care about and for one another. It amazes me every day to experience it, and to see what people will do for people that they only know by words and photos on a computer screen.
Anyhow... I called The James this week and got an appointment with Dr. Olencki for the 24th. Why so late? He's on vacation for the first two weeks of August. While part of me wanted to get in to see him ASAP, part of me is relieved; we can enjoy the rest of our summer as a family without the possibility of me spending part of that time in the hospital. Rebecca starts school on 8/26 - the big transition to first grade, in a new school, and riding the bus. I need to be here for all of that, and I will be.
Lots to investigate and to think about. If for some reason the IL2 doesn't pan out, then we're back to systemic therapy and the decision of Sutent vs. the Avastin/Torisel or Interferon trial. In the mean time, I'm in fight mode right now and trying to stay positive,which is working most of the time. I sent an email update to my work colleagues that included a couple of jokes, which caused a a few people to comment that they were surprised that I could be so upbeat. I definitely have times of feeling very downbeat, trust me! I just try not to show them to the world when I can avoid it. And I want to make sure that my attitude is as helpful to my medical situation as possible; so having a constant pity party is out of the question. I'm more worried about Jim, who doesn't express his feelings; he needs to let them out and not keep them bottled up. I understand him not wanting to express his sad feelings to me, of all people, but I hope he can find some outlets to help him cope, and help him to enjoy our time together.

Thursday, July 23, 2009

The waiting is over

I finally talked to Dr. Rini late this afternoon; the preliminary results of today's pelvic MRI are in, along with the final results on the abdominal MRI. For those of you who hadn't heard, I was supposed to have both MRIs on Monday but a communication snafu at the imaging center caused me to have to have the tests on two different days. Maybe the tech liked me so much he wanted to see me again, I don't know. :-) At any rate, Dr. Rini thought he'd have results for me on Tuesday, but I didn't hear from him.

My anxiety waiting for his call was huge by Wednesday afternoon. Thanks to some calming words from a friend on my kidney cancer email list, I calmed down last night by considering that maybe I hadn't heard from him because Wed is not a clinic day for him. Turns out he was on service on Wed and this morning, so this afternoon was the soonest he could call.

Unfortunately, the wait did not provide good results. Both the liver and the ovary are abnormal. So, it looks like I get to join the systemic therapy club; if only that group could be far more exclusive, darn it! :-) Jim and I are going to see Dr. Rini tomorrow afternoon. He gave me a brief overview today or as he called it "the view from 30,000 feet" of his thoughts on my options at this point.

Systemic therapy is medical therapy, like chemo, except that standard chemos do not work on mRCC (metastatic renal cell carcinoma). Fortunately for us current patients, several new drugs have been approved by the FDA in the past 3-4 years for use in cutting off the blood supply to RCC tumors. These are what you may have heard of as "anti-angiogenesis" drugs. Different drugs target different pathways, so if one drug doesn't work or stops working, they move you to another drug. I have "met" online a number of people who are battling RCC and finding that
it is more like a chronic disease than a life-shortening one.

We will be talking in more detail tomorrow, but these are the main options Dr. Rini is considering for me:

1. Sutent, one of the first "new" RCC drugs and right now, the gold standard for treatment of metastatic RCC. He referred to it as "the first line of defense" and it was an option that I expected.
2. Clinical trial of Avastin and Interferon vs Avastin and Torisel. Avastin is approved for treating both colon and breast cancer, and will be approved for RCC officially shortly. Right now it is combined with Interferon, but the clinical trial involves combining it with another new RCC drug, Torisel.

I will be asking about looking for another opinion about another option, which is called High Dose Interleukin 2 (HDIL2 for short). This used to be about the only treatment for mRCC. It is a very rigorous and toxic course of therapy, which involves being hospitalized and receiving a bit dose of the drug every 8 hours for several days, or until your body can't take it any more.It has a a lower response rate than the newer drugs... BUT... it is the only drug that for some people has a complete response, meaning it kills all the cancer forever (or for many years at least). Cleveland Clinic does not offer HDIL2 as a treatment for mRCC. I have heard that Dr. Rini is against it, but I have also heard that he has told at least one patient I know to go for it so that they know they've tried everything. The timing of the treatment is important. If I were to go on Sutent first, subsequent HDIL2 could cause heart problems. Yikes! Plus, if it works, I wouldn't NEED the other therapies. It sounds like hell to go through but if I can do it, I am up for the challenge. I have heard that James Cancer Center at OSU does it, as well as somewhere in Pittsburgh (not sure where but would guess UPMC) and that one of the best places to go is Beth Israel Deaconess hospital in Boston. So I will ask about it all.

There are lots of thoughts floating through my head right now, a mix of despair, sadness and disappointment along with hope. I recently bought a book about talking to your kids about your own serious illness. Haven't cracked the spine yet; I think subconsciously I was hoping that if I didn't read it, I wouldn't need it, you know? I think now is the time though. The very thought of anything keeping me from watching my sweet girls become adults is what tears me up inside
the most, but which also provides me with the biggest motivation to fight.

Wednesday, July 15, 2009

Hoping for a hemangioma

Yeah, you read that right... sounds weird, especially if you know me and know about the hemangioma on my temple that looks like a big purple mole. I had it mostly removed via laser about 5 years ago but it grew back. At this point it's not really top of mind though, and isn't the kind of hemangioma I am hoping for.

This afternoon Jim met me at the cancer center for my appointment with Dr. Rini, to go over the results of the CT scans that were done on Monday. I was running slightly late for my appointment, since I'd left work a bit later than I should have and encountered multiple slow drivers on my way to the Clinic. Then my usual luck in the parking garage did not hold, so I had to park almost on the roof. But they were running a bit behind at Taussig (cancer center) anyhow, so I had a chance to relax for a few minutes.

When Dr. Rini came in, I could see the paper in his hand showed a printout of an image from my scans. Not good news, that... never good news. As he started to explain to me the two areas of concern that were noted by the radiologist, I could feel the sick buzz run through me... this can't be happening again! I am supposed to be NED again. I could feel the tears welling up as he talked. The disappointment and fear welled up for a while, though now I am feeling calmer and in fight mode.

First up was my right ovary. The radiologist noted that it is enlarged "with abnormal enhancement, increased from prior examination of 1/13/09". What happened to the April scan? I was scanned in April, but apparently the radiologist who read that film didn't see anything of note. Dr. Rini told us frankly that he didn't see any increase either, and that in his words, of 2,000 patients he's seen, he's never known RCC to go to the ovary. I like his opinion better than the impression noted on the CT results: "possible ovarian mass/metastasis should be considered." I'd had ultrasound in March when I had the endometrial biopsy done, but unfortunately nothing about the ovaries was noted in that report. Dr. Rini is going to follow up with my gynecologist to get her opinion. He mentioned that the radiologist may have "overread" the scan. Hopefully that is the case, but now I'm probably going to have to have some more testing of my girl parts. *sigh*

The second part of this one-two punch was the more upsetting. "There is an apparent enhancing lesion in posterior medial segment left hepatic lobe measuring 2.4x2.1cm". In other words, there's something showing up in the middle of my liver. Super. Just super. The recommendation of the radiologist was to follow up with a MRI. Even more super. Guess who has had one brief MRI in her life and who quietly freaked out the entire time? Guess who has hoped and prayed never to have another? Yes, that would be yours truly. But the MRI is a must. Bless his heart, Dr. Rini prescribed some Xanax for me to take before the test. And I need to remember to keep my eyes closed when I am in that damn tube.

It is possible that the liver spot is a hemangioma. If so, then I'm still in NED status and will have follow up CT scans in October. My sister told me, and I later remembered her mentioning it at the time, that when she saw a gastroenterologist about some issues, he noted that she had several hemangiomas, which he referred to as being as common "as dirt". So maybe I'm just spotty like Barbara? Hope so, anyhow.

If the MRI shows that this is not a hemangioma, then Dr. Rini says we will look into having it removed via Radio Frequency Ablation. This was one of the procedures that had been considered when we were looking to remove Spot earlier this year, but based on Spot's proximity to my intestines, it was ruled out. As we discussed before, Dr. Rini says that you can't keep chasing the cancer around, taking it out over and over from the body surgically. And if I keep having things pop up as frequently as I have, then it will be time to look at systemic therapy. However, he says I am not yet at that point. Yay for that! He and I will talk on Tuesday to go over the MRI results, and will talk about whatever the next steps might be.

In good news: my wound closed completely over the weekend. On Sunday morning I removed my bandage and realized that the Hydraferra was no longer in place. Oh my god, I thought, the wound closed around it. Great... now they will have to open it up to remove it. I called Jim into the room to take a look. He noticed the Hydraferra sitting behind me on the bed. Apparently it popped out when the bandage came off. RELIEF! Tomorrow's medical journey is to see the nurse at the wound center. I am curious to see what she will say about it. It is definitely closed; there is no drainage any longer. The only thing on the bandage surface is bits of the silver nitrate stain on my skin, which looks like gray dead skin flakes (because it probably is?). So yay for that.

In general, my health is good, I feel good, I just keep growing these extra "things". I cried some at the appointment, and told Dr. Rini that this wasn't the news I was hoping for, but that I am so grateful that he is watching me so closely. Later I told Jim that if Dr. Rini ever leaves Cleveland, we are moving to follow him. heh heh

So let's see, what am I waiting for at this point, medically?
- MRI and results so we see what we are dealing with hepatically
- information from my gyn about my ovary, and possible future appointments
- information from my PCP about my hypertension medication. I probably need to have the dose increased. For the past 3 months I have been taking low estrogen birth control pills to control my PCOS. I had to have my blood pressure checked to make sure the pill is not causing it to increase. Well, it was elevated. The nurse took it in both arms, sitting and standing. (Never had that done before) I had brought my wrist monitor and it was way off. She told me that the wrist monitors are not very reliable; mine seemed to be for a long time. Maybe it's too old? At any rate, I need a new monitor, and I need to find out about the hypertension med so that we can decide what to do about the pill.

So it seems I may be very busy in the upcoming weeks. Not really the summer plans I had dreamed of, but all things considered, they could be far worse. While I am absolutely upset and disappointed, I know how lucky I really am.

Friday, July 10, 2009

That time again

It's coming... scan time. I am scheduled for CT scans and bloodwork on Monday (7/13) and will see Dr. Rini on Wednesday (7/15). I have no reason to believe my scans won't be clear, but then I never did. So far my "scanxiety" isn't too bad; I've been so busy with life that I haven't really had the time to worry. It's easy to say '"don't borrow trouble" but man, is it hard to put into practice all the time.
Plus, my good friend D's ongoing battle with cancer has taken another bad turn. This incredibly strong woman has been fighting breast cancer for 3 years. Mastectomy and chemo were hoped to cure her, and it looked good until she had a seizure in the fall of 2007, and they discovered a brain tumor. Radiosurgery seemed to knock it out and gave her respite throughout 2008, when the damn tumor came back. In 2009, she's had two neurosurgeries and 1 radiosurgery so far. Recently, she has had a few episodes where she kind of "loses" her speech to a degree, and can't read words reliably. At first the doctors thought that her anti-seizure medication dosage needed to be adjusted. But now a MRI has shown "something" in the area where the tumors have been. She had a spinal tap a couple of weeks ago that was clear, but had another yesterday and will get results next week. It is just so unfair that she has to keep going through this. My heart is broken for her and her family. She still has hope, as well as faith, and so do I, though she knows that the situation is not at all good. Fortunately, she left today on a previously scheduled vacation that I pray will be a balm to her and her family's souls. She is planning to continue fighting this beast that has invaded her body, but she absolutely needs a break.
So, this has been on my mind a lot this week. I'm not drawing any parallels between our situations, but it's frightening to witness how something we have no control over can take over our body and life, as well as the lives of our loved ones. I am slowly working on making consistent positive lifestyle choices, but what if they aren't enough, or what if they are "too little, too late"? This kind of thinking wages war in my brain with my persistent sense of hope that somehow I can get rid of all cancer cells in my body. If my scans come back clear, I will buy 3 more months to work on myself, both physically and emotionally. If I get bad news, I will still work on myself, though, I promise.
In other body news, I *still* have a small opening in my incision from my February surgery. It had mostly closed and I wasn't diligent about putting a bandage over it on a daily basis, thinking it didn't need it. A coworker let me know that one of our hospitals (and the closest to my office) has a new wound healing center. I made an appointment and saw them for the first time last week. They were absolutely wonderful. The doctor, who is a plastic surgeon, is very personable, and was really kind. He very tactfully let me know that in his opinion, my surgeon should have put a drain into the wound when they did the surgery, and that would have kept me from being at this point. *sigh* Oh well. At any rate, they gave me a cool purple dressing to use, and a wonderful bandage, that I barely notice. It is silicone based, and doesn't irritate the skin around the area. I went back to the center this week for a two week follow up, to learn that the hole is now healing "too fast". The center is coming up so quickly that the skin will not grow to cover it. They used silver nitrate to "burn it back" a bit, and I will go back next week to be checked and have it done again if needed. If you click on the link for silver nitrate, you can click on a link within the article to 'granulation tissue' that will explain it better; however, if you are squeamish you may not want to linger on the example photo on that link. There is also a photo of a hand with a silver nitrate stain - I have this in my side too, and it looks weird. Hopefully, the whole thing will be closed by the end of the month. The doctor is concerned though, because the incision was made on the very innermost part of a skin fold on my side - not a good place for healing since it's moist and dark. He thinks that I should continue to wear the bandage for a few months after it heals, to give the skin more time to completely heal. This plan sounds like a hassle, except for two things. One, the bandages are truly very comfortable, and if the wound is totally closed and no longer exuding, I can wear one for up to a week. Two - and more important - if the wound opens again, the best way to fix it is surgically. YIKES!!! That is an option I would really, truly, like to avoid if at all possible. The only surgery I would welcome at this point is my fantasy surgery, to remove excess skin upon losing a lot of weight. Like I said, fantasy... But if it happens that way, of course, I will do what I have to. This just gives me yet another reason to lose some weight, so that I don't have so many of these nooks and crannies on my surface.

Saturday, July 04, 2009

Verbal snapshot of Rebecca

Rebecca has been reading to Jim and me (and Carly when she'll sit still for it) a lot lately. I listened as she read an Amelia Bedelia book to me, and realized how much progress she has made. She's been able to read since before she started school, but she has come a long way in terms of vocabulary and comprehension. The last time she read AB, she tripped over the name of the Rogers family, as well as a number of other words. This time, she barely stumbles. And her inflection as she reads aloud is wonderful, so I know that she understands what she's reading. I've noticed lately that when she reads aloud, if she doesn't read a sentence with proper inflection, she'll go back and re-read it aloud, so that it makes sense to her. I smile inwardly every time she corrects herself. I remember having to read and reread aloud to teachers to get the inflection correct; it blows me away that she has already figured that out.

This summer she is attending a day camp at the facility where she attended Kindergarten, and where she will go for after-school care beginning in the fall. Their activity schedule includes trips to the library as a regular activity. Rebecca has had a library card for a while now, and is extremely excited about being able to use it on a regular basis. I remember how much I loved going to the library and it’s so gratifying to see my daughter begin a love affair with reading as well. The other day she was telling me about a “log cabin” book at school, about a girl and her sister. As she described the story to me, I realized it sounded a lot like Little House in the Big Woods. I got excited, geeky reader that I am, because I have been looking forward to her reading the Little House books, and getting a chance to re-read them along with her. I had pointed them out to her a year or more ago and at the time she told me they sounded “boring”. This crushed me for a moment; Little House boring? No way! But now that she has discovered them for herself, we are looking forward to reading them. I remember so well going to the library and getting each book in sequence. Then the TV series came out and I was beyond excited, since the books were so new to me. I HAD to watch every week, but none of the rest of the family was interested. Back in the day (1970s) we had two TVs, one in the living room and one in the dining room. The big TV was color, something we didn’t get until I was 10. The little TV was of course black and white. But every week I would sit on a dining room chair and watch my beloved Laura Ingalls.

Rebecca’s school participated in a week of standardized testing this spring. She talked about it throughout that week, describing to Jim and me the kinds of tests they were taking. She was not concerned or anxious about them at all. We tried to encourage this lack of concern by telling her that we were proud that she was doing her best and that we only ask her to try her hardest. I suspect that her teachers did the same, because she found the whole week to be easy, if a bit dull compared to her usual routine. A few weeks ago we received information about her scores, and they were off the charts. Her vocabulary got the highest grade-level equivalent, which doesn’t surprise anyone who knew her as a two year old, describing to her toddler room teacher about her dog having Hip Dysplasia. Her score for listening was the "lowest" equivalent, but was still listed as being consistent with a second grader. I don't put all my stock in these tests; to me her scores say that she's a good test taker, like her mommy. On the other hand, she has learned a lot this year and is capable of learning much more. I do have concern about her being bored next year when she enters first grade at the public school. Our school district has some information online about their programs for gifted students, and Jim picked up some info as well. When school starts we can talk to her teacher about seeing if she should be evaluated.

Rebecca is maturing in other says, as well. Finally, as far as she was concerned, she lost her first two baby teeth in May. Many of her classmates had lost teeth during the school year, which disappointed her, especially since she was one of the older kids in her class. Her bottom front two teeth had been somewhat wiggly for a long time, and finally one got really loose. She came home from school on a Friday with the tooth hanging by a thread and a message from her teacher that she expected Rebecca to return on Monday without the tooth. She couldn’t bring herself to pull the tooth out. I showed her how she could use a tissue to get more “traction” and ended up pulling it out. Her excitement was enormous! She is disappointed that she hasn’t lost the top two teeth yet, since she knows so many kids who have. But at least she had her first tooth to present to the TF, unlike her mom. I started losing teeth at about the same age as Rebecca, except that when I was six, I was in first grade. Since my birthday is in September, I was always one of the youngest in my class. I was truly desperate to lose a tooth. At our elementary school was a kindergarten teacher, Mrs. Doll, who was famous for pulling loose teeth for kids. Gross, right? But the kids all wanted her to perform this public service. One afternoon when our class was visiting the library, Mrs. Doll happened to stop in. I immediately showed her my wiggly tooth and begged her to pull it out. She obliged, and I immediately started bleeding. My teacher took me next door to the teacher’s rest room to get a paper towel; I didn’t even care that I was bleeding, since I had just lost my first tooth, AND got to enter the mystical world of a staff lavatory. My teacher put my tooth in a small envelope so I could take it home. As soon as I got off the school bus, I took the tooth out of the envelope to show my mom. Unfortunately, I did this at the end of our gravel driveway. The tooth disappeared into the gravel and I searched frantically for it. Panicked, I ran up to the house to get my mom’s help. Of course, I had no idea exactly where on the driveway I’d dropped the tooth, and my mom told me I should have left something, like my lunchbox, by the spot I’d been standing in, so we’d know where to look. Six year old kids unfortunately don’t usually possess that kind of thinking, so of course I hadn’t done that. I was distraught that I would have nothing to leave for the Tooth Fairy, but my mom told me to write her a note. I did so, and was rewarded the next morning with some change – a dime, maybe? And that was an exciting amount of money at that time. That summer my parents had the driveway paved with asphalt, so my baby tooth is entombed forever in the driveway.