It started as a bad day. Two weeks ago, I woke up to the remains of an Emmitt Smith Projectile Vomit Episode, all over the carpet, of course. Then, I dropped a glass out of the cabinet… a glass that, as I put it away the previous night, I thought, “There’s a pretty good chance this will fall onto the counter.” And I balanced it in there anyway and was rewarded with a shower of glass shards. Bad things come in threes, as you know, and when I came in from my run, there it was on my phone: 407-898-5452. A message from Dr. Shroff at Florida Hospital Cancer Institute. I was relatively sure she wasn’t calling to say hi. I was right.
As it did last fall, my MRI detected something suspicious. Small, but big enough for Dr. Shroff to pick up the phone. Yesterday’s CT scan confirmed: The cancer is back. Or maybe it never left. Maybe despite my miserable winter with radiation and chemo, The Beast was just lurking there, waiting for me to gain some traction in my life so it could come roaring back out.
There are 4-5 small tumors in my chest wall (could be worse… could be in my lungs. How ironic would that be, for me, ME, to get lung cancer?) that weren’t there in April. I only half-heard him say it then, but now, I vividly remember my Huntsman oncology quarterback, Dr Akerley telling me in October that if the radiation/chemo didn’t kill this cancer, that’s all he had up his sleeve. We were hoping the ghastly treatment would buy me more time, but it didn’t.
I have no symptoms of anything bad, except that it’s still hard to breathe and I still have that annoying cough which no longer can be blamed on Kilimanjaro. Dr. Akerley says that’s left over from radiation and probably from the crap that’s been in the air since the weather turned here. You can bet that every new little tickle in my throat, cramp in my calf, or upset stomach is going to send me screaming back to Terry (Dr. Akerley’s nurse). It would be better for everyone, particularly Terry, if I get into a clinical trial sooner rather than later.
So now what? We are holding off on systemic chemo, because I feel pretty good. And I guarantee chemo would make me feel pretty bad. Instead, I am calling in every chip I have ever thrown out, trying to get in to a clinical trial called PD-1 or PD-L1. These are for drugs that are basically immune system inhibitor inhibitors. They turn off the governor that causes an immune system to stop working. Merck, Genentech, Medimmune, and my good friends at Bristol Myers are all running trials on this therapy. For me, it won’t be that easy to get in to one of them, though. Thymic Carcinoma is not part of the description for any of the trials because it’s so rare. The drug company would be admitting me to the trial knowing it won’t get any good data from me, really. They’d just be doing it to try to save my life. Now’s the time to call your friend/relative/ex-husband if they work at one of those companies, to convince them to let me in.
And what else? I’m not changing any of my many plans for the fall. I still have Lake Tahoe 70.3 on my schedule for September 21, although I won’t race it hard. I plan to go to Austin for the Ride for the Roses on my birthday weekend, to the PPD Beach to Battleship weekend to promote clinical trials the following weekend and more. I just have to be flexible about adding and canceling things. And I need to be ready to hop on a plane, if I get admitted to a trial. You know me: I’m always ready to hop on a plane, even if it’s United.
Three weeks ago, everything was fine. Today, I’m looking for a Hail Mary pass. I’d say this is a fairly graphic illustration of the fact that you have to live EVERY day like it could be your last. Luckily, I’ve been doing that for a while. And I feel pretty good… no REALLY good, that I’ll get into a trial for a drug that will extend my life AND let me keep my hair.
I have been a huge advocate of clinical trials for more than a decade. Now, I’m hoping it’ll be a clinical trial that saves my life. Not to be morbid, but at this point, it looks like that’s all that will. I am filled with optimism. And as you know, attitude is everything. Livestrong.