I had big news a couple weeks ago. Astonishing news, really. I told a close circle of friends immediately, and posted to Facebook and Twitter later in the day. With each hour that passed, talking about it became more and more difficult. It was almost a week before I said anything public about it at work. And then I pretty much stopped talking about it altogether.
I got the results of my first post-treatment PET scan. There are spots to keep an eye on, which my radiation oncologist believes are inflammation. That makes total sense because I have a rough cough and can’t catch my breath, which are also after effects of radiation to the lung(s). Other than that, though, there was no sign of cancer anywhere. It was the magic word NED–No Evidence of Disease.
At first I thought my sense of reluctance was rooted in disbelief of the news. I mean, the main mass was big–6 cm X 5 cm and growing quickly. Complete immediate response in Stage III lung cancer is rare–most instances where there’s complete remission seem to happen with continued shrinkage over the months after treatment. Even though I remained optimistic, I wasn’t expecting news that good.
Logic kicked in and reminded me that, in my case, it makes sense. It was the same type of cancer I had in 2012 (HPV positive squamous cell carcinoma), and that type of cancer is known to respond very quickly and completely to chemo-radiation. In my specific case, it responded the first time with remarkable speed. My radiation oncologist for this second go-round even commented that, since it was the same type and it never returned to the original location, there’s a good chance it will never return to my lung either.
And yet the reluctance to talk–or even think–about it grew. That’s new for me. I’ve been speaking openly about facing cancer since 2012. People were congratulating me, friends and loved ones were so happy… and yet I felt like I couldn’t completely share that joy. I even had a great idea for a game that would in many ways be about the experience of standing close to your own mortality… and I couldn’t bring myself to even start on it.
“Why?” I asked myself last night, when a friend commented that it was all recovery and normal life from here on out. “Why?” I asked myself again today when I heard a friend telling someone else with cancer my story to give that person hope. Why was I so reluctant to participate or do more than try to smile?
The answer was the same, in both cases: it’s too soon. I came out and said that to Charlie earlier in the week when he commented that I’ve survived cancer twice. “Well, let’s wait and see,” I said. “Give me a few more clear scans and I’ll call myself a survivor.”
When I was going through diagnosis and treatment the first time, I couldn’t sleep. It was my first time ever dealing with insomnia. Part of the solution was to get disposable earplugs, to cocoon myself in dark and silence. I went through the first pack of ten sets in a couple weeks, so I bought a giant box of around a thousand bright orange earplugs from Amazon. The first night I opened that box, I had a single immediate thought: Will I live long enough to use all of these?
Every few nights when I reach into that same box for a fresh set of earplugs, I remember that moment. I remember that question. Will I live long enough to use all thousand earplugs?
I still don’t have an answer because the box isn’t empty yet.