Clinical trial update: The slightly embarrassing thoughts swirling around my head four months in1March 22nd, 2016
Last year, my sister Melissa (a two-time hodgkin’s lymphoma survivor) got a chest X-ray for a particularly nasty cough, and her doctor saw a spot she didn’t like. She suggested Melissa go to Sloan Kettering to have her oncologist check it out, which sent Melissa into a major panic spiral. She called me right away, told me she was certain her cancer was back, then sent me this text late that night:
“You should never go off your meds Erin. Maybe this is all happening so you understand how awful it is to always wonder when it’s going to come back. You are so lucky you take a pill to keep it away. I wish I could!”
The spot turned out to be nothing—the oncologist took one look at the slide, knew it was scar tissue, and told Melissa not to worry. Still, it was a reality check. And a reminder that once you’ve received the call where your life comes screeching to a halt, you’re never quite the same. You get a whiff that something could be wrong and your mind immediately skips to “shit’s gonna hit the fan” mode because you’ve lost the ability to not assume the worst. Because the worst has happened before. In our case, more than once. I’ve tried to retrain my brain but it isn’t so easy.
As you know, I went off my life-saving cancer medication despite Melissa’s plea. Last November I joined Sloan Kettering’s discontinuation trial to see if my remission will hold without treatment. I have been off Gleevec for four months—and am now in the exact place Melissa warned me about: Wondering if my cancer will come back. I’m particularly concerned since my last two blood tests were slightly positive (very slightly, which you can read about).
Am I lying awake at night obsessing about the results or cataloging all the what-ifs and worst-case-scenarios? Not at all. Trust me, I already did that while I was weighing the pros and cons of joining the trial in the first place. Good times. As a writer, I often find myself thinking in headlines—usually the click-bait kind you see splashed across your homepage. The ones I drafted during my decision-making process: “Cancer survivor makes risky decision that costs her remission, possibly her life.” OR “Mom of three dies of cancer…because she ‘didn’t feel like’ taking her medication anymore.” (I was writing a lot for Yahoo! at that time, what can I say?) I imagined my friends and family reading about me and it was almost too much to take. But that’s not where my head is now, I promise.
Once I’d done all the research and officially joined the trial, I quieted those melodramatic voices. Truly, deeply, I do not feel like I’m putting my life in danger here. Nor do my doctors. As I said in a previous post, I don’t want my cancer to come back simply because I like how I feel off my medication and I don’t want to have to go back on it. But, of course, it’s more than that. It’s about feeling like a failure. Crazy, right? Well it’s not just about my own need to succeed, it’s that I don’t want to let down other CML patients who have been following my journey, hopeful that they may someday be able to enjoy a treatment-free remission. And I don’t want to let down all of you, the people who have been rooting for me for so many years. I put myself and my story out there in a major way and I don’t want to disappoint, or to look like a fool for trying. Even if the headline is a benign “No biggie, back on your pills you go” it will make me feel like I couldn’t hack it. Ridiculous, I know, but it is a biggie to me.
And then there’s this: For the past decade or so, as test after test came back undetectable, I’ve felt like I don’t really have cancer. No one can find it! And if it starts to really come back, even though we can control it again no problem, it will be a reminder that I do have cancer, and, hey dipshit, cancer is serious so stay on your damn medication this time, OK?
My father, who was an air traffic controller in the 80s, always told me to “make a decision and make it work.” I have taken that advice on so many occasions. And I thought about it a lot when weighing the risks of stopping my medication. I made the decision and I have absolutely no regrets. But in this case “making it work” is out of my control and for a control freak like me, that just may be the scariest thing of all.
1 responses to “Clinical trial update: The slightly embarrassing thoughts swirling around my head four months in”
Wow, you are my twin, nicely said and I feel the exact same way. Thank you for this xoxoxoxoxoxoxoxox