Even as I wrote it, I knew I was asking for it, and as usual, the universe did not disappoint. On day 11 of 14 of my drug cycle, I was feeling pretty good… a little sluggish, occasionally queasy, but well enough that I started running before I actually caught the pass. And on Day 2 of my OFF-week, I fumbled the ball. Big. I bobbled it, didn’t look where I was going, and ran right off the field and over a cliff, where I dangled for a long 24-hours. My neck, shoulders, back, hips, and knees felt like I had been hit by a truck. I could not stay hydrated (still can’t), so very familiar symptoms of dehydration (I’m familiar with these… dehydration is usually self-inflicted for me) appeared–the massive headache, nausea, parched skin, bleary thinking. But it was the fatigue that was the most impressive. It’s not an unfamiliar place to me. The I-Can’t-Even-Reach-For-My-Water-On-The-Table-Next-To-Me-Even-Though-My-Throat-Feels-Like-The-Sahara fatigue. I know better than to fight it (you can’t anyway). I just waited it out, determined that I was NOT going to cancel my massage with Gavril, even though I had to bail on lunch, a ski date, home-cooked dinner, and more. I made the massage. It was one more little victory.
The most affronting and appalling fact of this detour to me was that it happened in my off-week. I fully expected the side effects I had at the end of the drug phase to lessen on Thursday, which was my first full drug-free day. (I qualify that. I have had to abandon the Aleve/Advil/Motrin regimen that keeps me going because of possible interaction with the Sutent. I am deliriously glad to be back on NSAID island.) But like the radiation days, the first couple after treatment were the worst. Even my blood pressure didn’t start coming down for 3 days.
I did rally enough to swim, lamely ride a Computrainer class (late arrival, early departure), and ski a tour at Deer Valley after I clawed my way back up the cliff. And now I’m in the Salt Lake Airport, about to catch (hopefully) my direct flight to Maryland. Tomorrow is just a blood panel (C’mon whites!) and a consult with Dr. Rajan. The tumors aren’t remeasured until my next visit in 3-weeks. Then we’ll know if the Sutent is even working. Depending on who y0u ask, the “effectiveness” rate is somewhere between 25 and 90-percent. But that’s for another day. Right now, I’m hoping that the big snow we’ve all been praying for for weeks and which has finally arrived will stop for an hour or so, so we can take off.
And The Bad
De-ice, de-lay, but no de-tour. I made it (late) into Baltimore. Sheryl and I did everything we did before my last CBC in hopes of getting those WBCs up, but this time, we failed. Dr Rajan says my white blood cells (Neutrophils, to be more accurate) are only a little off the mark, but truly, I whiffed by about 25-percent. I should have started my second drug cycle today, but I’m in Limbo Land again. This wasn’t unexpected and has happened to others in the trial. Dropping white blood cell numbers and platelet counts are from the drug. And my numbers aren’t low enough to cause any alarm among my team, but I have to wait til more of my whites wake up.
Thanks to the reliably awesome Terry in Dr. Akerley’s office, I have an appointment for a repeat CBC in Park City on Monday morning. (Weirdly, the NCI can’t order a blood panel done outside its walls. Something about insurance. Ludicrous. Ludi. <–Only 3 people on earth will get that.) If I hit my numbers on Monday, the NCI will overnight the Sutent and I’ll only be a week behind. If not, I wait another week.. and then another. But if I am still low after 20 days, I, once again, am out. Dr Rajan says that’s a long way off, and if we even come to that, he’ll help me get Sutent. But it’s so early in the trial, we don’t even know if it’s working for me. The long, strange trip continues.
And, I should also mention, that I should be on my way to BWI to fly back to Park City, but I’m sitting on the couch at my brother and sister-in-law’s house. I was on hold with Delta for a collective 4 hours before I finally was able to change my flight to tomorrow in anticipation of Winter Storm Thor. Now, of course, it looks like my original flight is probably going to make it out, despite 10 inches of snow. So here’s how I spent some of my day.
I think it’s been 15 years since I last swung a snow shovel. I’ll probably be crippled tomorrow. Which these days will be the least of my problems. Onward.