... when you've been avoiding writing? Admittedly, my days have been so full, and my thyroid tanked (again) so I was pretty fatigued until my medication was adjusted (again). But more than that, I think I've just felt at a loss for words at times, and too full of them at others. A few of you have kindly reminded me that I haven't posted in a while, and knowing that you care makes me feel all warm and fuzzy... even while I'm apologizing for not keeping up to date here.
I'll begin with good news. I finished my second cycle of Sutent at the beginning of November, and had scans two weeks ago. Chest CT, abdominal and pelvic MRI, blood work and a doctor visit all in one day. Amazing how tiring that was... of course I was still hypothyroid at that point but didn't know it. My appointment with Dr. Rini was at 1PM. Unfortunately, at that point he had results of my CT (clear, still, excellent) but the MRI results had not come in yet. Since I'd taken the day off from work, I had no problem waiting, so I sat in the exam room reading and playing on my DS. He checked in once, then Shari, his NP, checked in once, both offering me the option to stay or go. At about 2:30 I thought, maybe I will just go, but then a few minutes later the door opened to a smiling Dr. Rini. He was smiling because the news was good. There was shrinkage of all masses in my liver, shrinkage of the mass in my pelvis, and two masses in my right kidney, which I hadn't realized were there, disappeared. So, the Sutent is definitely doing its job. The plan is for for me to go through two more cycles, and be scanned again around late January. As long as the Sutent is still doing well, and I am still tolerating it, we'll then go three cycles before scanning again. It was wonderful news that was well worth waiting for.
The side effects of the Sutent are not fun, but I am soldiering through. This time my mouth sensitivity was pretty pronounced, and at the end of the cycle I had a bump in the middle of my tongue toward the back that was super annoying. I am very sensitive to temperature and seasoning while on the drug... one night we were eating meatloaf for dinner and I thought, crap, I put in too much of the seasoning I normally use. However, I noticed that Jim and the girls were all eating without complaint... the girls would definitely speak up, and loudly, if the meatloaf was "too spicy". I asked Jim, "is the meatloaf too seasoned, or is it me?" It was me. One day I went down to the cafeteria at work with a couple of my team mates. We were wondering what one of the soups was like, so two of us tried a spoonful. I immediately burned my tongue, and had a red spot on it for the rest of the day. That will teach me... and the soup was not all that great anyhow. Probably a good thing, because if I'd bought it, I wouldn't have been able to enjoy it anyhow.
You'd think that with such tongue and taste problems, that I'd be withering away due to some amazing weight loss, right? Not so much... I realized late in the cycle that I was eating even when it wasn't comfortable to my mouth, trying to soothe my feelings, I think. Now that I am on this targeted therapy, I am definitely more aware of the potential for this cancer to not just go away, to not just be able to be cut out of me as it's done in the past. I am getting back on top of things lately, so hopefully I can overcome that bit of panic and not sabotage my health further.
These feelings of terror/sadness/mortality have been heightened by the recent deaths of a few people in the kidney cancer community. The passing of my friend Angelo was the most upsetting, as he and I shared the bond of being parents to young children. When I first started investigating treatments for metastatic renal cell, I happened across Angelo's blog. At that point he was undergoing HDIL-2, and I read his story with great interest. The IL-2 did not work for him, but he was able to get into a clinical trial that did wonders for his mets. Unfortunately he had brain metastases, and while they were able to be treated, swelling in his brain causes seizures, and the steroids used to treat it suppressed his immune system. He had so much optimism about beating his cancer, and the next thing anyone knew, he was gone. It really shook me to learn of his death. We'd never met, we'd never spoken on the phone, but his death hit me like he was someone I saw daily.
Angelo's story also brought back memories of my friend Deb, who was another victim of brain mets, in her case, from breast cancer. The first anniversary of her death is coming up in a few weeks, and I still miss her a lot. I keep in touch with her husband and her daughter, which has been wonderful. I can only imagine how hard this last year has been for them. She still guides and mentors me; while I don't consciously think "what would Deb do?", I notice that I've internalized advice that she offered over the years. She was also the most optimistic cancer fighter I have ever met. I feel that she's up in Heaven keeping an eye on me and telling me to keep fighting.
Lots more to spill, but I need to get up from this keyboard or I will never get my day started. This weekend will be cra-zee... Rebecca's family birthday party is tomorrow, and we're having a party for her school friends on Sunday. Hello fun, goodbye weekend! So, the rest of my random thoughts will have to wait before they can be revealed... I'm sure you're on the edge of your seat, no?