I have developed a lot of superstitions after getting sick. I never say that I’m cured. I bristle when I think about the word “remission”. I never let my brain dwell too hard on relapse. If any of these thoughts cross my mind, I feel like its going to come back. You see this in those with OCD – thinking that mere thoughts can cause large scale actions.
So when I thought I was relapsing, I did what made sense to me. I didn’t tell anyone.
If I was a better blogger, I would have blogged as this happened. Details get lost as time passes and the acute observations caused by an adrenaline overload fade. This is all in retrospect of what I can safely say was my worst week ever. Even worse than the weeks around when I was diagnosed. Relapse is far more frightening than cancer itself, for many reasons. Tougher treatment, guaranteed time out of work, almost-guaranteed fertility loss, the horrifying idea of a stem-cell transplant (which is quite similar to a bone marrow transplant if we’re talking on levels of severity).
Hodgkin’s relapses are tricky. For people like me who never had what are called “B” symptoms (fevers, night sweats, large unintended weight loss), a relapse can come up as silently as the first occurrence. When I discovered the swollen lymph node in previously cancered armpit, I shut the thoughts up in that dark corner of your mind where you repress memories that later manifest as a 57 year old with a hording problem. And, like those memories, you never really seal them off completely.
The anxiety grew with every day – and anxiety is a tricky monster. It mimics the exact symptoms a large scale relapse with growing tumors would cause – shortness of breath and breathlessness, pressure in the chest, extreme fatigue, phantom pains in my lymph nodes, abdominal pain, stress hives, and back pain.
Oh the back pain. Alcohol induced back pain is my baseline. Within a few sips of alcohol in the past, my lower back would erupt in spasms. Eventually, as the tumors pressed against my spine, this became a nightly occurrence even without any drinking.
Alcohol was not causing the back pain this time, and the back pain was no where near as severe, but it’s easy to make yourself think anything when you go into crisis mode. Fear elicits the most primal of behaviors and thought processes. For me, this involved regressing to the higher thinking levels necessary only to provide food, water, and sleep. Remembering to put my car into “park” was a challenge.
Who knew a little mass the size of a small marble could cause so much damage?
Friday night through Tuesday, fears simply mounted. Finally on Tuesday, Valentine’s Day, I broke and told the boy, who immediately came over and made me call my doctor. On the upside, my room was spotless for his first introduction to my apartment.
PET scan happened on Friday. They always happen on Fridays. That means they’re not read until the following week. At this point, I had crossed from the denial stage to the preparation stage. I started to tell people that I thought I was relapsing. I got coworkers mentally prepared and well-connected people ready to fundraise. Then I moved into emotional diarrhea and told EVERYONE.
Scan was read on Tuesday. Of course, fine. Though I had every reason to believe it wasn’t fine. Luckily I have an oncology team that never belittles my fear. My oncologist even apologized to me that I could feel the node – as if he had control. It’s either more cell die off or my body fighting off illness. What a body not riddled with a cancer of the lymph nodes is designed to do.
After I got the clean results, the boy looked at me and said very simply, “You just got great news. Why don’t you seem happy?” The fact of the matter is, it was much easier to be happy and feel like an active participant in my health when I was in treatment. I knew that by going to the cancer center every other Friday, something was actively being done to kill the cancer cells. Now, I feel like I’m waiting for it to come back. (Cue the “Buy my aloe/acai/goji berry/obscure Middle Eastern herb and it will kill ALL errant cancer cells!” bots. Except they’d never say “errant”.)
I’d like to say that “Survivorship gets harder before it gets easier” falls under a thing that no one tells you is going to happen after you are done with cancer. But in fact, it’s something that everyone tells you. You just can’t believe it until it actually happens to you. The human mind simply cannot anticipate the complex range of emotions, fears, anxieties, stresses, and, dare I say, level of PTSD, that you can experience after such a trauma.
But after two relapse scares in 6 months since ending treatment, you learn how to dust yourself off and keep moving. What else can you do?