The Devil You Know

In “What it feels like...” and “36 things you ask…”, my best friend and my father provided their accounts of the contradictions that accompany a cancer diagnosis. As I read their posts, it gave me some comfort to know I’m not the only one plagued by a constant internal tug-of-war-- even if my specific struggles look a little different.

So, from my perspective:

I’ve never felt more full; I’ve also never felt more alone. I’ve never laughed as hard or cried as often. I’ve never been more me, and I’ve never felt more unrecognizable. I feel so desperate to understand my role in other people’s lives and yet I feel self-absorbed and conceited and gross for thinking that should matter in the grand scheme of life. I’ve never been happier with how I spend my time, and I’ve never felt more terrified of time (or more accurately, the fragility of it).

The juxtaposition of my emotions has perhaps never been more clearly illustrated than in my feelings about Immunotherapy.

Chemotherapy disturbs me deeply. The idea of poisoning my body every three weeks is a tough pill to swallow. And still, I find comfort in my dates with Nila. When I walk through the doors of VOA and I wait 30+ mins for my port draw, or when I ask Nila how her mom is doing after a tough few months, or when we get an update from Chantel about her never-ending couch saga, or when we talk to Dr. McGaughey, and I catch a glimpse of Dean.  

Even my symptoms provide me with some sense of peace. I can tell you exactly how Etoposide and Carboplatin will make me feel and (roughly) what my scans will look like in six or nine weeks. I can prepare myself for the nausea or the discomfort that comes with “firefly”, the injection I get to help keep my labs solid.

Losing my hair was decidedly hard. But when it started to grow back, so did a list of questions about the efficacy of my treatment. I wasn’t ready to welcome either of these things into my life again.

“The Devil you know…”, I guess.

And why am I willing to live with this “Devil”? Because at the end of the day, I can say confidently that this course of treatment is buying me more of my most precious commodity: Time. I remember countless conversations walking along East Beach (pre-Bindi), chatting with my father or my mother or John about how I would spend the winnings if when we won the lottery. I feel like for the last year, I’ve won the lottery. And I’m really proud of the way my whole family (Mayer, Rhoden, Ohio State, Smithfield, Girl Scout, Fisher, etc.) has chosen to cash in.

But at the end of the day, there is no hope in chemotherapy. I’m never going to walk in and have Dr. McGaughey tell me my cancer has been cured after the 21st round of the exact same treatment. So my hope comes from getting another day, another week, another month, or when I’m dreaming big, another year.

Knowing what I’ve gained through chemotherapy has made the idea of changing treatments overwhelmingly scary. New treatment means new symptoms, new routine, potentially a new team, new scan expectations, a new timeline.

My dad has articulated this as succinctly as humanly possible:

“Immunotherapy may work... It may also fail completely.

For the first several months of this journey, I was pretty fixated on the second half of that sentiment.

“It may also fail completely.”

I was happy in the comfort of my known enemy and I could not and would not allow myself to give up the promise of a little more time for the hope of what might be. It felt selfish and greedy.

In August, we had our first scare that my cancer was starting to advance and I really had to face the idea of Immunotherapy. I had been trekking along for six months. At the end of a weird and emotionally grueling week, I decided I was ready for the next step, if it was ready for me. But it was a false alarm.

Since then, I’ve gone into each post-scan appointment with Dr. McGaughey ready, and secretly hoping, that the decision would me made for me the way I thought it had been in August. That the chemotherapy stopped working, and that it was clearly time to move on to the next line of defense. But every time, I’ve gotten the incredible!/ disappointing? news that the chemo was “relatively stable” and that I was able to cash in a few more Bonus Days with my family and friends. Every time it felt sticky and gray and muddled. But it also felt definite and reassuring and maybe, just maybe, a little miraculous.

Today, I walked into my appointment with Dr. McGaughey ready to ask more questions about where we draw the line on “enough” troubling progression to make a change-- again, looking to find a black-and-white, easy-to-spot turning point for when to end the chemo. But before I had a chance, he looked me in the eye said to me clearly

“I’ve been thinking about you, I spoke to the radiologists again, and I’m ready to move on from this regimen.

He gave me his informed perspective on the benefits and side effects of immunotherapy. We talked frankly about the risks. Worst case, it fails completely. Even then, Dr. McGaughey thinks the risk of switching is small - that it’s unlikely (albeit not impossible), that the disease will progress that far in four months we experiment with Immunotherapy. And in that event, we can always go back to chemo - the Devil we know.

Worst case. It’s a place that I don’t love to live. But it’s feels tenuously safe.

There are still a few more boxes to check (working through insurance, discussing with Dr. Saltz at Memorial Sloan Kettering, taking some time to think through additional questions we have about what Immunotherapy will look like for me and for us). But as of right now, I plan to walk out of treatment on Thursday for my last chemo for (worst case scenario) at least four months.

That sentence makes me cry tears of relief.

Today, I’m letting myself nestle into the most hopeful place. The place where I’m one of the rare and inexplicable cases where Immunotherapy cures cancer. Where the radiologist can’t find a trace of disease anywhere in my body on my next scan.  Where I can finally look in the mirror and confidently proclaim I’ve witnessed a miracle.

Today, for the first time officially, out loud, I’m putting all my Easter eggs in a new basket.

“Immunotherapy may work.”