Thursday, November 29, 2012

Still here... kinda sorta

Physically here.  Mentally, emotionally, not as much.  The past few months have been a whirlwind to say the least.  And I for one am exhausted.

Health first... as of October, there was still not a slot open for me in the BMS936558 trial that I hoped to get into.  And my scans showed growth of both liver mets, along with a new one sprouting up.  The pelvic met grew a little.  The lungs were more indeterminate, since they are tiny and hard to catch at that size on CT.  So Dr. Rini felt it was time to let go of the trial and start taking Inlyta.  He said that if he knew there would be an opening in the next four weeks or so that he would be okay with me waiting it out a little longer, but that he didn't want to end up in February or so, still not in the trial, but with a lot of progression of disease.  I agreed with him; I was jarred enough by the growth of one met from 2cm to 5cm.  My tumor load is still low, relatively speaking, but I definitely don't want it to continue to increase.

***EDIT 11/30/2012  I forgot something about the trial when I was writing this, but remembered it later based on a friend's comment on Facebook.  I recently learned from another RCC patient that the investigators are no longer enrolling new participants to receive the combination of the trial drug and Votrient.  That would have been the side I would have been on, since I've already had Sutent.  Apparently too many liver toxicities were found.  Learning this fact made me feel better about missing the trial; it told me that this was not the trial for me after all. END EDIT ***

So, I started Inlyta. I had a delay of a couple of days while my insurance decided I was approved for it.  I had to laugh; I got an approval letter from them about five days after I actually started taking the drug.  At that point I knew it was approved because I had to pay the standard "high tech" copay for it, rather than thousands of dollars.  

I'm taking 5 mg twice a day; oh the joy of having to remember to take it two times.My thyroid TSH level also went sky high, so I saw an endocrinologist who increased my Synthroid dose and changed it to twice a day.  I'm supposed to take the Synthroid alone, on an empty stomach, with nothing after it for 30-60 minutes, so I can't take it with the Inlyta tablet.  My phone has turned into a medication reminder alarm, which has been super helpful.

The side effects of Inlyta are similar to those I experienced on Sutent.  I've had some diarrhea, fatigue, and mouth sensitivity.  Unlike Sutent, Inlyta is taken continuously; no two week break periodically like I'd been used to.  So I've felt the buildup of effects now that it's been almost two months. My mouth is becoming much more sensitive to heat and spice, and my tongue is tender, so hard and crunchy foods are no longer that appealing.  The good news is that effect keeps me from snacking on salty stuff, which is my downfall.  I've kept off the weight I lost while on Afinitor.  That weight loss helped me to meet the goals set by my employee health insurance to earn the 'gold' level of premiums, which is the lowest amount.  So for next year I won't see an increase in our premiums... yay!  If I hadn't made the goal it wouldn't have bothered me since the insurance pays SO MUCH for my tests and drugs now that frankly the premium is a huge bargain to me. But it's still nice to make that goal.  

The "new" side effect is actually an old one in a new place. Hand and foot syndrome is pretty well documented among cancer patients on some drugs.  While on Sutent I got painful red calluses on my feet that made walking painful.  That hasn't happened so far now.  However, a couple of weeks ago I developed a sore spot on the pad of my left thumb, just above the crease at the knuckle joint.  At first I thought it was a paper cut, but then it started to look like a blister.  It wasn't until I started to develop smaller sore blistery-looking sores on the same spot of both of my middle fingers that I realized it was HFS.  It actually hasn't been too bad; still able to use my hands though sometimes opening a container is difficult.  I use lots of lotion on my hands now and hope that I don't continue to sprout these things.

Then there are my legs.  A few weeks ago I noticed that my calves were both really sore; if I sit for a while, when I get up they are very tight and I have to limp around until they loosen up.  Dr. Rini felt them, and could tell where the pain was, I think because they are a bit swollen.  I'm back on blood thinner shots (oh yeah, have to remember to give myself two injections every day too... poor me! ha ha), plus it's exactly the same pain in both calves, so we're not too concerned about blood clots.  By the end of the day my hamstrings are also really sore and sometimes my feet.  I did a little searching on Google to see if there was a connection to Inlyta, but didn't find much.  I'm now wondering if the bad thyroid level is contributing... and if so, hoping that  the higher dose of synthroid will soon relieve the pain.  It really sucks, and gives me a new insight into people who live with chronic pain.

So yeah, I'm kind of a mess right now, though still trying to push through.  Work is insanely busy and stressful right now, as we learn on the fly how to use our new system to get the data out that people want from us.  I always felt a good level of confidence in my skills and knowledge at work, but that has evaporated.  The rest of my team feels the same way, as we're all struggling.  We are all learning, and definitely know more than we did two months ago, but there is a lot more to learn before we feel comfortable.  It is a decidedly "un-fun" place to be right now. Of course, the fatigue and other side effects I'm experiencing are not helping my attitude.  If I can get rid of the leg pain, that will help my outlook tremendously.

Bleah - that was just a big dump of whine, wasn't it?  Oh well, it's not always sunshine and roses on this path.  I'm still fighting and still hoping for better days ahead.  But pain and fatigue make those days seem less likely. It's easy to keep your spirits up when you don't "feel" like a sick person, which has been the case for me for a long time.  I still haven't adjusted to the difference.

More later, as I am past my bed time.  

Monday, November 26, 2012

Ten years of parenthood

A decade can feel like a long time and a short time, depending on whether you are looking ahead at a stretch of ten years, or reflecting on ten that has passed.  Ten years ago today, Jim and I became parents to our sweet Rebecca Grace.  Her entrance into our lives held a little drama, as which I wrote about here when she was four.  We've had our moments of drama since then, as parents always do, especially when raising a sensitive and sweet girl like our Rebecca.  But it's been an overwhelming joy to be her parents.

At ten, she's growing close to 5 feet tall, making it hard for me to remember the tiny girl I used to hold in my arms.  She loves fashion, using her wardrobe in creative ways to show her idea of style daily. In the summer she plays softball, and all year she dances.  Rebecca has been taking ballet classes since she was four, adding jazz classes a few years later.  This summer she tried tap dancing and discovered a talent for it, so those classes continue as well.  Nancy, her dance teacher/studio owner recommended that she try a contemporary dance class this year; it's been a great new experience for her.  The teacher is a young woman who was a student of the studio owner, and the other girls in the class range in age from 11 into their teens.  Rebecca is the youngest in the class but really holds her own.  The class is challenging but she really enjoys the movements; I was relieved to see that she doesn't feel intimidated by being around students who are older.  She hopes to become a student assistant for her Nancy when she is a little older.  Nancy has already had Rebecca "fill in" a few times as assistant in Carly's ballet classes, and she loved it.  This summer her bike riding skills really took off, and she spent a lot of time tooling around the neighborhood.  In the fall, we allowed her to ride to school several times with our next door neighbor, who is a fellow fourth grader.  It was a leap of faith on our parts as parents, balancing our desire to keep our kids safe with wanting to give them some deserved freedom.  They both loved being "bike riders" to and from school, and I'm sure that in the spring they will be doing more riding instead of taking the bus.

Music is another passion of Rebecca's.  She has discovered pop music and plays the radio in her room daily.  That reminds me of myself at her age.  What is different is that Rebecca can also log on to You Tube to see her favorite performers, and to read lyrics that are posted with some of the videos.  Jim and I often hear her singing along to her favorite tunes ("If I Die Young" by The Band Perry is one she loves) and she has even recorded herself on video singing her songs.  She showed me some of the videos, which were great.  I admire her self-confidence in sharing them with Jim and me; as a kid I would NEVER have shown that kind of thing to my parents.  It wasn't that they would have been critical, but I always worried that I was somehow lacking in everything I did.  It makes my heart happy to see that Rebecca has more self esteem than I did.

This school year will be her last in her current elementary school, as next year she will go to our district's one intermediate school.  She's enjoying this year of being in the highest grade in her school.  Her teacher is wonderful and Rebecca adores her; we've been blessed with great teachers at every grade so far.  Rebecca is a great student, which is no surprise to Jim or me, and works hard to do well.  Her school work is one area where she does falter in her self confidence sometimes, especially when it comes to math.  I think the issue is that math doesn't come as easily to her as reading has, but she is clearly a great math student; we've pointed out to her that on standardized tests, her math scores have been even better than her language scores.  I have encouraged her to not dismiss math as "too hard" so that she doesn't limit her opportunities later on.  It's sad that at such a young age she's falling into the "girls can't do math" pattern; I am determined to keep her above ground on that one!

At home, Rebecca loves to read, or as her teacher encourages all of her students to do, to "get lost in a book."  Early in the year she started reading the Harry Potter series and ended up reading all of them in less than two months.  I had never read HP so I decided to get the audiobooks from our library to listen to on my daily commute.  Doing that provided us the opportunity for some great conversations.  This spring she wanted to read The Hunger Games and I decided it would be okay, as long as she stopped reading if it bothered her, and talked to me about it.  She wasn't fazed by the book but rather fascinated by it.  I took her to see the movie when it came out, with the caveat that if she couldn't handle some of the scenes, it would be okay to leave the theater.  Her only negative reaction was to complain about parts of the book that were glossed over or omitted in the movie.  She has since read the rest of the Hunger Games trilogy and we're looking forward to seeing the films of those books when they come out.

Rebecca is a typical tween in that her television tastes run to the tween shows on Disney and Nick; fortunately we restrict TV viewing to weekends to keep the number of hours of being as Jim calls it "mesmerized and hypnotized" to a minimum.  She's not a complete angel, but a regular kid who can be very silly at times and who has to be reminded more than once to do chores sometimes.  And I like it that way.

Looking forward to the next ten years with our wonderful daughter...