A Series of Miracles (or Reasonable Facsimiles)

My last week has been insane and terrible and great and perfect. The headline is, I’m in the Sutent trial at the National Cancer Institute. My journey to get there, of course, has been circuitous and unpredictable and affected by the most amazing strokes of good karma.

Backtrack to last week. I knew my white blood cell (WBC) count was too low to get me in to pretty much any trial at the NCI. At this point, I was considering compassionate use of Sutent (not awesome) or paying for it out of pocket (even less awesome). Then, out of the blue last week, I got an email from Dr, Giuseppe Giaccone, one of the gurus of Thymic Carcinoma. He has a trial, starting this week, for PD-1 and Thymic Carcinoma. You may remember that PD-1 was my trial of choice back in the fall. It’s an immunotherapy, triggering your own immune system to fight the cancer cells. Also, I loved Dr Giaccone. At this point, I’m thinking it’s providence. Karma. The Universe letting one get by for me. And, I have an NCI visit already planned for this week so I can meet with Dr Giaccone immediately. I’m feeling Saved.

Then, since I (and Patrick) couldn’t bear to wait until my NCI visit to see if my white blood cell (wbc) count had improved, I called in a favor from Dr. Max Testa and got a blood panel done in Park City. I needed at least a 3 (of whatever measurement it is) wbc to start the trial. I scored a 3.3 and was feeling better and better. I have options again.

It came crashing back down again Tuesday, when I got another blood panel done at the NCI. My number came back as 2.3. The lowest yet. We were all dumbfounded. How could my count have dropped an entire point in 6 days? But all is not lost, I have Dr Giaccone. We met with him Tuesday afternoon and he told me all about his trial, which has limitless potential to me.  It’s brilliant. His PD-1 trial hasn’t started yet, but will any day now. Even though today, my blood values aren’t good enough, he believes that I am in.

Dr Rajan at the NCI hadn’t given up. He scheduled one last Hail Mary blood test for Wednesday morning. Linda, the research nurse, had already cancelled all my other tests since it looked like I was out of the trial. I had the blood drawn and was waiting in Dr. Rajan’s office for what I thought was confirmation of the denial, when he and Linda walked up with huge smiles on their faces. 4.0. My WBC count had nearly doubled since yesterday. Why? We don’t really know. This time before the test, I ate breakfast (since there was no need to fast for a CT scan) and Sheryl (sister-in-law) and I ran on the treadmill before the appointment. Was that what made the difference? Maybe. Dr. Rajan said whatever I did, keep doing it.

So now, I had a choice to make. It was a hard one, and I am still torn, even after committing to the Sutent trial. My reasoning for choosing this trial is that I can start it tomorrow. Obviously, my blood values are volatile and inconsistent. Today, I qualify for the trial, so I’m going with it. Who knows what might happen next month? I do believe immunotherapy is the wave of the future, but that trial hasn’t started yet, and I could have the same WBC problems with that trial. I am taking this gift from the Universe and know I’m blessed to be able to have a bird in the hand (what does that mean, anyway?)

So sometime tomorrow, I will take 50 mg of Sutent down the gullet and embark on a new adventure. There are potentially some yucky side effects and there is a reasonable chance that it won’t work. But that is all for another day. Today I Livestrong. With hope. And options. And a sweet bird in my grubby little hand. Life is good.

Here we go.