I’m a chemo failure.
It was 2012 when I was diagnosed with chronic myeloid leukemia. I soon found out that fighting leukemia is complicated. For me, this disease is always changing, which left me to change with it.
I tried the first line of defense, a TKI oral chemotherapy. My body reacted severely. I changed to the second line of defense. Dosages were increased. My body reacted. Dosages were decreased again. It was a moving target.
It put my family through uncertainty and their own pain was mirrored in mine. It left my employer using words like “unreliable” when speaking about me. My finances were taking a hit. I forged ahead and followed the advice of my healthcare team.
A full molecular response
Then in 2017, I got a phone call from my oncologist. I achieved what he called a “full molecular response”! Five years of leukemia and it was now undetectable. I was off chemo!
I celebrated! I shared it on social media. I drank in all that positivity and I was over the moon to give this shred of hope to anyone and everyone I knew. I felt free again!
I took all this newfound energy and applied it to my work and my household. I played just as hard as I worked. I included as many people as I could. I opened my world again.
Three months later, I received another call from my oncologist. I was experiencing an “aggressive relapse” of the condition. I was stunned.
I was a failure. A chemo failure.
I felt like I let people down
I heard the urgency in my oncologist's voice over the phone. He told me to go back to the meds I had safely stored in the back of my medicine cabinet. He thanked me for not disposing of them. He talked to me about how common this relapse is in the world of leukemia.
My oncologist said he was so sorry. I felt like he was the first person I let down. I said that I was sorry too.
I had told everyone I was ok. I had said that I was not only on the mend, but fully mended! Everyone was happy and comfortable. Everyone trusted that things were better now. How could I take that away?
I felt like a fraud, like I had hijacked our collective peace. It felt so bad. I kept it low-key. I peppered apologies here and there. I said very little. It felt like I had failed at life’s biggest test. For just about everyone, I could see that disappointment in their eyes. I could see hope turn to sadness and that need to be well, just well.
For some, what I saw was a palliative care mindset. Especially in the faces of my healthcare providers. It was as if that one test defined my life expectancy. For others, I felt like they kinda gave up on whether I would ever be well again. I saw what seemed like exhaustion. A need for it just to be done.
You know that look in someone’s eyes when they declare the match over? They throw in the towel. They walk away from the ring. Round One over. It’s excruciating.
I am not defined by leukemia
Then there were the cheerleaders. The ones that reminded me that I am not defined by this illness. I am bigger and badder and there is so much more to me than messed up chromosomes that suddenly turn on. These people suggested that if it can be turned on, it can be turned off! They reminded me of what I can do, and disregarded what I couldn’t do. They saw this as a learning experience rather than a setback. I leaned on their support.
Back to tests, and chemo, and nausea, and fatigue, and rashes and infections, and the financial burden of it all. Back to that uneasiness, and pain, and neediness, and unpredictability.
I decided to use my brain this time. To take control of this leukemia mess somehow. I put a noose around its neck and dragged it around angrily. Enter Round 2. It was quieter, fiercer, and unapologetically raw. Blow by blow, the whole match was in slow motion. I had something to learn. The lesson was huge.
“It is possible to commit no mistakes and still lose, that is not weakness. That is life,” Jean Luc Picard. Star Trek New Generation.
Check out Part 2 of this series!
Do you experience brain fog?