Side Effects
Source: Justin Owens, Unsplash
Nobody ever said chemo would be fun, but no one also prepared me for the side effects I’ve experienced.
Initially they started me on a drug called Folfox which is a combination of two different chemo drugs. The first drug, 5-FU, generally creates annoying side effects like bland taste buds and a general feeling of exhaustion and weakness. This was largely my experience during round 1. 5-FU is also a really commonly used drug for a lot of cancers. The second drug, Oxaliplatin, is where I fell into less than 5% of the population who experience the side effects I had last week.
In a nutshell, my nervous system got angry…. like, really, really, really angry. It didn’t happen immediately either. Like a song, the effects came on one by one and crescendoed into what amounted to me being trapped fully in my body by Tuesday. As the week has gone on and the toxins have worked their way out of my system, so too have the side effects. One by one and day by day each has started to feel quieter and less painful.
It started over the weekend. I couldn’t sit upright without drooling profusely. This wasn’t normal drool either. This was the type of drool where I would have to carry a napkin to speak because I couldn’t control the liquid coming out of my mouth. The only way to get reprieve was if I laid down so starting on Sunday I was on my back anytime I wanted to communicate.
Gradually Troy started to notice the trembling. It too started small but grew to reach a point where even laying down my fists were clenched up like a bug at either my face or chest. I would sit up and my legs would shake uncontrollably. This was terrifying because it made it impossible to do simple things like sit still, respond to texts, use the remote control for the TV, or even use my arms to get the strength to prop myself up. On Sunday, after almost a full two week round of chemo I should have been getting better but instead I kept getting progressively worse. It was at this point on Sunday that I was terrified enough to check into the ER. I had no idea what the hell was going on.
At the ER they did what they typically do which is treat me like a new case, run a bunch of tests (this was my first stroke test), and keep me there for hours. My vitals were healthy. The levels in my blood were actually better than they were two weeks ago and long and short I was fine. Apart from my aceites bag aching terribly and annoying me more than words can express I was clinically fine. By Sunday at 9:00 PM I had to beg the ER to let me leave because they still wanted to do more tests. To go I had to agree that leaving might mean I risk dying, sign a form, and get the MD to sign off. We were on our way home by 10 PM.
Monday. Speech starts to go. The tremors and the speech kept coming on more and more and getting simple sentences out was difficult. I couldn’t laugh or smile or even cry without extreme difficulty. I also had lockjaw and couldn’t eat solids. It is the weirdest feeling in the world to take a bite of food, know you know how to swallow it, and still not be able to do it. At this point Troy had confirmed with the oncologist that what I was experiencing, albeit rare, were side effects of the drugs so we made an appointment to come in on Wednesday and I was told to go in for an MRI on Tuesday to confirm I didn’t have brain damage or something else going on.
Tuesday was the MRI. Under normal circumstances MRIs suck. I would say the only silver lining in this was I could lay back and stop drooling for 40 minutes. We were home for maybe an hour or two when the oncologist called to let us know they found something in my brain. On Tuesday night our heads were in worst case scenario mode and my mind immediately went to more cancer and Troy, my Mom, and I just started sobbing. Well…they sobbed, I weakly sobbed and cried out no. There was nothing to do until tomorrow. So while I am not someone who generally relies on prayer, that night I prayed for some relief and something better than where the week was going.
Wednesday morning started with my first acupuncture appointment. I was still at my worst, barely able to speak or smile but by the end the decrescendo started and for the first time in days I started to feel relief. The drooling hadn’t stopped entirely but it slowed. My speech was still broken, but I could talk again. The bag was still hurting but I can’t control that so best not dwell on it until I could. The best of all was that I had energy, a small amount, but enough. I had slept for an hour the night before and in the middle of the night I had scribbled down a priority list for my oncology team -
CT Scan - I don’t want to do more without confirming with data that something, anything, was working.
Quality of life - This state isn’t living. It is a nightmare and needs to change.
Ascites bag needs to go.
Chemo break - I’ve lost 20% of my body weight in two weeks and was too weak to start another round of hell next week.
Figure out what the hell is in my brain.
I rattled off my list during my appointment and was happy to hear they agreed with most of it. They booked me for a CT scan that afternoon as well as an appointment with an Internal Radiologist to get my bag checked out. They also agreed I needed a break, confirmed my side effects were rare, and agreed to switch me to a different chemo cocktail after my break. Fortunately the new drug also addresses #5, which may or may not be a false positive because it’s so tiny and barely noticeable on the scan because it crosses the blood brain barrier.
The CT scan was uneventful and confirmed no new growth or shrinkage so on that end it was a positive outcome. The IR appointment was the highlight of the day. The bag came out and I got my freedom in exchange for agreeing to come back to get paracentesis (basically manually drained) if the fluid comes back which I happily agreed to do. The rest of the week, like the start, has been like a decrescendo of side effects. Every day has been different and each morning I wake up feeling better little by little. I’m by no means feeling back to myself but I am slowly getting there with each day.
My smile is back and I’m back to solid foods as of yesterday so I am feeling a lot of gratitude for that and the time off to rest and heal.
-Brynn