I haven’t updated my blog in quite a while. I haven’t been posting to Facebook or tweeting much either. In fact, I’ve been pretty quiet even on Skype and Slack. It feels like I’m in stasis and I think my instinct to be silent is a part of a desire to make that stasis quiet and dreamlike instead of anxious and emotional.
In some ways, this feeling of suspended animation probably comes from the fact that things haven’t changed much. I’m used to cancer treatments changing over time, as the radiation and chemo either begin to take effect or begin to have their effects finally start to wear off.
In this case, I feel pretty much the same as I have for the past few months, with the exception of some pain in my right side and chest. I was on steroids for almost two weeks to try to stave off the rash and other side effects, then I went back into the trial at a reduced dose of epacadostat. Both Dr. Ani and I were concerned that the rash was a true allergy to either the epacadostat or the Opdivo… but at the reduced dose, the rash continued to fade and, as of a second lower dose treatment week, has never returned.
The crazy parade of side effects reduced overall, and I’ve settled into a pattern. I have treatments on Tuesdays, and for a few days after I feel like I’m getting a flu, with body aches, a sore throat, and a general feeling of illness. For around a week after that, I have the aches off and on and a general loss of appetite or mild nausea. Then I have a week where I feel fairly normal, before starting another week of treatment. The only part that varies is my breathing and cough, which seems worse this treatment cycle versus last. It’s something to keep an eye on, since pneumonitis is an uncommon but serious side effect of Opdivo, especially in combination treatments like I’m getting.
So the feeling of stasis partly comes from the fact that things are genuinely staying the same… but I think it also comes from the fact that I don’t know if the treatments are working. I have that pain in my chest… but the pain goes up and out to my shoulder and sometimes down to my elbow, which has happened before when I’ve been using a mouse for way too long while sitting in the same position. This specific pain is most likely a WoW-related injury but on the other hand, my new Alliance rogue is up to level 92 now!
Leveling Elzpeth to 91 is a symptom for how much I’ve been putting myself in stasis, intentionally. It’s a distraction from worrying about whether the treatments are working. I have my first CT scan on Monday and I get the results when I show up for treatment on Tuesday. I know it’s unlikely to answer the question of whether the trial works for me–and even if the cancer has progressed, we’d stay on the trial for another 6-8 weeks at a minimum because Opdivo can take up to three months to show results.
So I know the answers are probably not close at hand. I’ve also gotten confirmation that my cell line is complete and ready in the Houston trial, so I have my second line of treatment ready as needed. It’s still hard not to think about possible outcomes, though, and I try to avoid the kind of short-term negative thinking that I know is not only bad for my mental state but also flat-out untrue. When I find myself thinking things like, “I should order fewer of those because who knows how long…” I stop, take a deep breath, remind myself that there’s no way to know what’s going to happen or how long I’ll be here. And then I look for a new distraction to put me back into stasis.
I don’t want to spend the years I hopefully have left in stasis though. There will never be a definitive moment where I feel “safe” from cancer. Even if I have the unusual result of being declared “cancer-free” for a third time, it’s always just another remission of undetermined length. This isn’t a short-term situation. This is my “new normal.”
It won’t happen overnight, but I’m coming out of stasis soon, like waking from a long, strange slumber filled with sometimes frightening but more often lovely dreams.