It’s been so long, I’m not sure where to start.
I haven’t written because I’ve been in a hole, and to write about it would have made it more real, and I felt ashamed about what was happening to me. I was ashamed at how deep I had fallen.
My last round of intensive chemo finished in early October, and my oncologist told me I could consider stopping early and not finishing the last round (since the protocol I was only was four months longer than what is typically done for someone with my cancer at Stanford).
I thought about it, discussed it with family and friends, discussed it with other doctors, and decided it was time to stop. I intuitively and intellectually felt my prognosis was excellent, and to do any more would do more harm than good.
I thought I would be thrilled to be done, but instead felt terrified. (Let me take this opportunity to correct any misconception you may have about what it feels like to finish long stretch of cancer therapy. It does not feel exciting. It feels anti-climactic and scary because the main thing structuring your life for as long as you can remember has now ended).
Then there was the night, a few weeks after I finished chemo and days before my parents were leaving the country on a trip they had planned before I got sick, when I had the scariest moment of this entire cancer experience.
It was around 9pm and I was eating a popsicle. I started to notice that something felt wrong with my mouth and I couldn’t quite get a grip on the popsicle. I threw it away, and then my mouth started to tremor, and then over the next few minutes my jaw muscles tightened into a spasm and my mouth clamped shut.
The force was so great I thought I would bite right through my face, or that my teeth would chip, and I shoved my fleece into my mouth to mitigate any damage. As each minute passed my jaw twisted tighter, and tighter, and tighter. I felt like I couldn’t breath. I didn’t know what was happening or when it would end.
My mom drove me to the ER, and thankfully we got in quickly. There are only so many things that cause this kind of reaction, and the doctors thought it could be from a low calcium level. They told me it would take an hour for the ionized calcium level to come back, and they might as well have been telling me it would take days, because every minute felt like torture. I made bargains with myself, like if God took away my pain I would never complain or be unhappy ever again. I closed my eyes and tried to calm myself, because the panic attack I was simultaneously having was twisting my jaw even tighter. I cried to my mom that I thought I was going to die.
I kept begging for medications—anything to make me feel like I wasn’t being tortured—and at some point the doctor mentioned Benadryl. For the first time my physician brain kicked in and I realized I had taken a nausea medication hours earlier that can cause this kind of reaction, called dystonia, for which Benadryl is the treatment. They gave me Benadryl and my jaw immediately released. The whole thing lasted a few hours. It was not a new medication and I hadn’t taken more that day than I usually took; the side effect was rare and would have been impossible to predict or prevent. So how could I not be terrified that something else bad could unpredictably happen to me?
The first effect this experience had on me is that I became afraid to be alone—especially bad timing because a few days later my parents left the country on their scheduled 3-week vacation. They arranged to have me stay with family friends, but their absence made me very, very uneasy.
A few days later I was supposed to fly to San Diego myself for a conference I had planned months earlier. Unfortunately, the second effect this experience had on me is that I became afraid the fly. I panicked the day before the trip was scheduled, but pushed through my anxiety and went anyway. I spent most of the flight having a panic attack and crying. And then I got to the hotel, where, sitting alone, I spent most of my time having a panic attack and crying (this was my birthday, by the way. Cue the world’s smallest violin playing the world’s saddest song just for me). I flew home the next day. I felt like a failure that I couldn’t follow through with what I had planned.
Unfortunately, getting home didn’t stop the panic attacks. The idea of doing anything—waking up, leaving the house, interacting with people—felt terrifying. Even when all I was doing was sitting on the couch, waves of panic would rise up and drown me.
When I was first diagnosed almost a year ago, I was under the delusional impression that I would get some chemo, be cured, and then move on with my life. Now I see it’s not that simple. I have experienced pain I can never un-experience. I will never go back to being the same person I was before. That Elana is gone.
If you can believe it, it never really occurred to me until recently that I could die. I’m sorry if pointing that out makes you uncomfortable (Don’t say that Elana! Stay positive! Cue me gouging me ears out so I don’t have to listen to such nonsense). Contrary to the belief of some, talking about death doesn’t make it more likely to happen. You can spend your whole life never considering death—I assure you you’ll still get there like the rest of us.
After all, how could I process the experience of having a life-threatening illness without thinking about death? Without considering how fragile life is? Without understanding how mortal I am?
I now see, though, that while we all face death, and pain—our natural state of being is wholeness. I was shattered into a million pieces, but over the past days and weeks, slowly but surely—and without having to do much but be patient and let time pass—I have started to come back together again.
I’m not having panic attacks anymore. I’ve started to drive, a little. Sometimes when I think about the future, instead of feeling terrified I’ll never be normal or capable again, I get excited about the possibility of working, living on my own, falling in love, experiencing joy, living.
I had chosen not to finish my last round of chemo, but after getting some conflicting information at a recent appointment from my oncologist, that decision is now up in the air (yes, this did kind of feel like I was being mind-fucked). So I may be done with chemo, or I may have the hardest round ahead of me. I will make a decision after doing some research with my family and doctors and considering the risks of putting more poisons in my body versus the potential benefits of having a greater chance at survival. Either way, my job right now is the heal as much as possible, so that if I do complete the last round, I will be in the best state to handle it.
I have learned I am strong. I have gone through one of the hardest chemotherapy regimens that exists and come out on the other side. I am resilient. I have fallen into the lowest pit of despair and crawled out. I have been broken, but someday I will be whole again.