Sometimes, your scans come back with less than good results; “progression” is occurring, which means your cancer is growing or has spread elsewhere.
In the case of my own journey, I was quickly flunking out of chemo regimens! My response from the first regimen of chemo – FOLFOX – was fantastic after the first six infusions. I remember feeling on top of the world when my oncologist walked into the room with a huge grin telling me “Good response!”; my eyes were wide open and dilated in ecstasy!
At the time, both myself and the oncologist agreed to continue with the same treatment plan with no breaks or reductions in strength. However, an additional six treatments later my scans showed a result that chilled my body to the bone.
“It looks like your cancer is progressing aggressively.” Meaning my tumors in my liver and colon were no longer responding positively to my current treatment.
“How the hell does that happen,” I remembered telling myself, “Everything was perfect a few weeks ago.” These are infamous words that many cancer patients will hear.
Cancer is relentless, while it responds often to chemotherapy, it has a nasty habit of finding ways around inhibiting cocktails.
One silver lining was that the grows were contained within the same organs and they did not grow more than my baseline scan when I was diagnosed.
One of my most hated words in the cancer community is “progression”. Before cancer that word had a positive meaning; things were moving along at a great pace – “My career is progressing towards a raise”. However, when you are in a cold empty room with your oncologist, that is the last word you want to hear!
Another word that you may hear in conjunction with “progression” is "mutated."
“Your cancer has mutated and is no longer responding to your current treatment” is something I heard on top of the word “progression”. In this case the word “mutated” is misleading and not referring to something out of Dr. Frankenstein’s laboratory, but in fact that your cancer now has a defensive pattern against some of the toxic substances known to the human body. This is certainly not the end, or a reason to give up. While this was not the end of the line for me, it was a huge wake up call for me to plan in advance. I doubled down and decided to focus on my offensive plan. The oncologist recommended the next standard chemo regimen – FOLFIRI.
Even pronouncing the word FOLFIRI makes it sound intimidating. Not to mention another lesson I learned: that chemo bioaccumulates in your body, meaning over time the toxins are negatively impacting your blood counts, enzymes, and even mentality too.
You’ll come across the phrase “chemo brain” which is a recognized condition that occurs in many individuals on chemotherapy. It’s hard to describe how it affects everyone, but in general problems there are with memory, concentration, and multi-tasking.
This condition can resolve fully after a year or more off chemotherapy. For me, I think it went deeper. Since I am still on standard regiments (10/2021), my chemo brain is still present. After 110 rounds of that toxic crap, I have been known to forget things mid-sentence, I commonly refer to that as “team pretty”, a phrase that I embrace laughing it off.
More seriously I think that my diagnosed condition of ADHD also contributes to my mental exhaustion. I’ve noticed that my body has huge swings of positive and negative energy, that is sometimes often hard to control. Due to previously used drugs years before my cancer diagnosis, like Vyvanse, I swore off drugs after terrible experiences. Instead, I used meditation and healthy eating habits to control my ADHD, harnessing a great outcome. Once the chemo started flowing through my veins, that’s when that control turned off and my symptoms started to gradually grow.
Switching to a new treatment plan sounded terrible, especially when I knew the cancer was “winning”. I remember telling my oncologist “I’m taking a chemo break!” she shook her head in disbelief. Thanks to incredible friendships and my openness to my needs, a friend of mine invited me to Grenada, a tiny island nation in the southeast Caribbean, where his uncles owned a beautiful house. This weeklong trip was MUCH NEEDED; never realizing the power of “Treat Yo Self Days.” This was my first break since starting chemotherapy – mistake #1.
There was a trade off in switching to this new regimen; the replacement of Oxaliplatin which caused my extreme cold sensitive pain from neuropathy with a new drug called Irinotecan. This was sort of exciting!
