14 & 3
Sounds like pretty good stats, right? Maybe for a baseball team, but not so much for a cancer survivor.
2021 was a complete blur, so I had all these grand plans to finally share about finishing treatment last year after 731 days, ringing the bell my amazing husband bought me (since there are no “celebrations” for oral treatment ending), and living life in remission on this 2022 National Cancer Survivors Day.
Instead, I get to share about sitting in the same room where we made the decision to start my first round of chemo back in 2014 and hearing that my cancer is back.
Again. Yes, if you are keeping track, that is the third time I have heard those words in 14 years.
14 & 3
I’m not surprised. I mean I literally have the word CHRONIC in my diagnosis, my fatigue has gotten worse, my recovery time from physical exertion has gotten longer, my night sweats are more frequent, and the random bruising has been back for a couple of months.
But DAMN, I’m angry.
When we made the decision that it was time for me to start treatment for the second time back in 2019, I was given a few different options and we chose to do the more aggressive targeted therapy route of Venetoclax+Rituxan. I couldn’t wrap my head around the thought of starting Ibrutinib and having no end in sight. Ibrutinib is usually given until disease progression or unacceptable toxicity occurs. Venetoclax+R on the other hand was 2 years of oral Venetoclax and 6 months of Rituxan infusions. It was a newer treatment and showed great promise. We hoped that even though it was a harsh drug (plus as we found out during my first round of treatment back in 2014, I am allergic to Rituxan) that it would get me into a deeper remission.
I started treatment in March 2019 and by December 2019, I was NED (no evidence of disease), my MRD (minimal residual disease) testing in December 2020 was negative, and I finished treatment in March 2021. We were off to a great start!
Or so I thought.
My April flow cytometry test results squashed that thought. Once again, I got only roughly 2.5 years between NED and my cancer being back. I went though 2 years of HELL; several ER visits for GI side effects, 60 pounds of weight gain, a new dx of ischemic colitis, months of cardiac testing, and now yearly cardiac required follow ups for about a year of “normal” life (or as normal as life can be for a cancer survivor during a pandemic).
So, excuse me for a bit while I feel all the feels. I’m sad. And mad. And frustrated. And tired.
But don’t pity me and don’t tell me to look on the bright side.
I know everything will be okay, my faith has not wavered but for the moment, I want to be human.
I’ll go back to being the BADASS that I am, soon.
And, since it is National Cancer Survivors Day, here are a few facts.
Plus a link if you would like to learn more about my diagnosis.