Fast facts (if you don’t have time to read the full post): I’ve been on my new nemesis of a drug Verzenio for one month and it has been a shitty time, both literally and figurately. Cancer is truly the gift that keeps on giving. My blood work showed today that I am not making up feeling like crap. My white blood count, platelets, and absolute neutrophils have dropped. All it took was 30 short days to return my body back into a fatigued, sad landscape. Womp womp.
Countdown to last day of Verzenio: 699 days
Countdown to reconstructive surgery: 133 days
TO THE LONG VERSION!
To my sister who most likely will read this… I am so sorry but I promise to treat this story with dignity. This story has haunted me on my Verzenio journey.
My memory has always been poor, now further amplified from chemotherapy and all the drugs I take. Memory recall takes great effort and focus, especially my short term memory. However, there is this core memory I have as a young sprout, sitting in my mom’s maroon mini van with my sister. It is pitch black out and my mom left us in the van as she ran inside a store to get something. Cassidy’s stomach was upset which was a regular occurrence but that night… oh that fateful night something was truly amiss.
If you have decent instincts, you might understand the feeling of knowing that something is about to happen. You don’t know what or how, but you know something is looming. I think I had that feeling that night. I don’t remember much that happened leading up to the climax of this story, but country music was playing softly in the background and we were wearing velvet pants, a perfect scene of two millennial girls in the early 2000’s. Suddenly, a weird scent filled the van and my sister started to cry. I was sitting behind her in the three row van and I peered over the seat to get a look. To my absolute horror, she had pooped in the car, but it was not just any poop. It was severe diarrhea and it was EVERYWHERE.
As the older sister, I panicked and debated whether or not to go into the store to shout for my mother to come back to the van to help. I ultimately stayed in the stink. The next entry of the memory involved arriving home in a state of chaos. My sister was lifted out of the booster seat from her yellow-orange puddle. She was whisked off to the bathroom and I just stared at the mess. I was horrified. How did this happen?
Fast forward to June 26, 2024 and I learned how that night might have unfolded for my sister and I now fully understand the agonizing feelings that those struggling with IBS or other bowel-related issues face on the daily. After starting my new oral targeted therapy on May 31 (read more about it here), I have learned some incredible life lessons: You cannot trust a fart, always know where a bathroom is, and never leave my poop bag at home (the fond name I have given to a repurposed makeup bag that carries Imodium and kaopectate to help when the urge of shitting myself strikes.)
At this point I bet you thought you were going to read a story about me shitting my pants and I am really happy to report that although I have been too close to such fate, I have yet to ruin my leased vehicle (or anyone else’s for that matter.) But the danger of a cramping stomach on the road, the inability to find a bathroom safe enough to hunker down in, is a new fear I live with daily. Yes, you may mock me and laugh (or close out of this tab and cringe in disgust) but diarrhea haunts me in the same ways that tortured ghosts do in haunted homes: always lurking and always a surprise.
I made a grave mistake joining countless Verzenio support groups and forums before starting the medication. I tormented myself with so many stories of patients shitting themselves, losing all of their hair, and their inability to function due to extreme fatigue. The trauma I have from chemotherapy began to claw its way out of the depths of hell that I had buried it in. I had promised myself that I would not allow myself to endure two years of extreme side effects. I don’t think I have the mental fortitude to do it right now. Everything I read just wreaked of violence on my body and I was having extreme anxiety over it.
I started Verzenio May 31, a week before my 32nd birthday, days before a big Pride event in Pasco that I was photographing, and just two weeks away from graduating from my leadership program. No better time to fuck up my intestines and colon than when I am busiest! Everything went well the first couple of days. But by June 3, the day I had my monthly labs and check in with my oncologist, things began their slideway decline. After my morning appointments, I went to a luncheon for work and ate a slice of greasy ass Domino’s pizza. I mean first mistake was eating that pizza when I have been eating so clean, thanks to my nutrition coach. Second mistake was thinking that I was going to be fine. No more than 15 minutes after gobbling down the pizza slice did I find myself releasing a higlighter yellow liquid into the wild. Okay, so pizza was going on my no go list. No biggie. I got this.
But as the month has dragged on, the frequency of what I politely call GI attacks began to evolve. It went from triggered from certain foods, to a pattern of every couple of days I could expect a flare up. But now I have learned that my flares just happen and I cannot figure out what is triggering them or why. I was content knowing I could avoid certain foods and drinks. I even went a strong 5 days without an attack! And then something changed and now I am at the mercy of the universe. I bargain with my body daily to let me be free of the sudden diarrhea and cramping for a social event or outing in favor of a time that I am at home and less vulnerable but do you think my body cares or listens? No. I mean it isn’t really my body’s fault. It is Verzenio holding my cells captive, ruining my immune system and deleting the power I once had over a strong colon. Clenching used to be my super power. I am now a pooping machine and nothing can stop me.
So yeah, June was really shitty and it shows no signs of stopping. Verzenio has diarrhea as the #1 listed side effect, followed by nausea, stomach pain, fatigue, anemia, and leukopenia. There are more, but those are the ones I am currently dealing with. I have noticed I bruise easier and for longer as well, but thank fucking god I have not experienced hair loss. I’ve suddenly gained weight quicker than normal, even without shifting my diet. I dream about napping all of the time again. My immune system is returning to its nonexistent status. Oh, and my hot flashes are way worse now.
But other than that I am… fine. I am alive.
In the grand scheme of things, these are small prices to pay for remaining NEAD (no evidence of active disease.) The goal of this drug is to kill off cancer cells that might be too inconspicuous to detect on a scan, but have the ability to be extremely dangerous if left to their own devices. The longer I go as NEAD, the better outcome, statistically speaking, I have long term. I hate the things I have to do sometimes, but I will always choose the path that give me the best outcome. Life is too great to not.
I have the option to lower my dose, but I do know my oncologist wants me to ride this high dose as long as possible to see if my body can acclimate. I have agreed to go another month raw dogging the toilet bowel in the name of experimentation, but if things continue to escalate (and if I poop myself in any vehicle) I will be asking to lower my dosage. It is preferred for me to stay on this high dose because I am high risk for recurrence so I am trying to negotiate that with my emotional side. You want cancer again or five trips to the bathroom within an hour? I will gladly wear the porcelain throne crown for now.
As I settle into my new temporary normal, I have noticed I am returning back to some of my old habits from my first round of oral chemo: I am not as responsive to texts and calls, I want to nap more, and when I am really feeling well I only want to do things I feel strongly invested in. My energy is so limited. Cancer is literally the best excuse for me to not do things. I hate using the cancer card but it is back in full effect. My body only has so much energy these days. Please forgive me for being a shitty friend. I am trying my best right now to keep my shit together.
Literally.
Today’s song lyrics of the day are brought to you by Teddy Swims.
“Something’s got a hold of me lately
No, I don’t know myself anymore
Feels like the walls are all closin’ in
And the devil’s knockin’ at my door, whoa”
madisonhatescancer 