I haven’t posted anything here in a bit because as I near the end of chemo things have gotten more routine and telling the same stories about side-effects and poop is sort of boring.
I just finished my penultimate treatment, and only have one more cycle to go in a couple weeks before I switch to surveillance and hope I don’t have to go back under the knife/laser/gamma rays.
The routineness of chemo as you get further along is sort of weird in itself. I am always on a knife-edge of wondering if I am going to pop another surprise neutropenic fever that puts me in the hospital again or if something else is going to go wrong, but at the same time I am more and more numb to being numb and the weeks of feeling like absolute hell. This has been the hardest time of my life so far, but human beings can get used to almost anything and I am so incredibly lucky to have shelter and safe food and water and healthcare and the only thing that is actively trying to kill me is my own body.
The neuropathy has gotten bad enough that we quit the Oxaliplatin for these last two cycles. My feet are on fire a lot of the time when they’re not just two lumps of dead meat on the end of my legs. My hands are getting worse and worse, and considering that once you get past 75% of the treatments there’s not a statistically significant change in survival rates, and if I am lucky enough to live another 20 years to fight in the water wars I need to be able to use all my digits, it was a safe bet to knock it off and get some recovery of feeling before things are permanently offline. It takes me about 4x longer to type up a post like this than it did in the beginning.
Because of the changes in chemo we made over the course of treatment, dosages, drugs, etc, I think from a physical standpoint I have had an opposite experience than a lot of folks with CRC. Physically, chemo has gotten easier for me as I near the end. Instead of the 8-hour long endurance infusion days where I lost the ability to speak or control my limbs and felt like I was about to die, and week-long struggles just to get up and move from room to room without being out of breath, I have slowly moved to a mode where Infusions are a boring morning and I feel like I have the worst hangover ever for 5-6 days. Still not great and very draining, but given the cumulative effects of chemo on most folks, I am kinda experiencing it backwards.
Mentally it’s still soul-crushing to wake up on chemo days and know I am going to go in to get poisoned and feel like hammered dogshit for a week. I fully understand why some people quit treatment early, especially if they are going from “This fucking sucks” to “This feels like it’s killing me more than the cancer.” I think the super-aggressive start with slowly tapering after surgery made it a lot easier on me, even though I have still felt like knocking it off the past couple months.
My last cycle is 3/14 and if I win the cancer lottery I should be able to say goodbye to the pump for good on 3/16. I am not naive though and actually spend a lot of time preparing myself to move back to a variant of the scary level of uncertainty that a cancer diagnosis starts with as my focus starts to revolve around scans and blood tests that are less frequent than what happens during treatment.
I am working on myself physically to help myself mentally. I am hopeful that the kidney tumor doesn’t turn into another emergency that ruins my summer and I can ride my bike to Madison or just anywhere and keep my shit together for whatever comes next. Fear is the mindkiller and all that. Pedalling is a nice distraction, even if I am slow and steady more than in the past. One nice bit of trivia: my muscle memory is still good enough to slap my feet into pedal retention even if I can’t feel them.
Anyway, there’s the rumors. You’ll start seeing me outside more in April and beyond as I get my body back online. Don’t ask me to lift anything heavy though, my flabdominals are fucked.
I hope everyone reading this is well, and I hope you all know I love you.
Love you Ttam!!!