Note: this is the second part in a series about what it feels like to undergo FOLFOX chemotherapy. You can read part one here.
The Terrible Threes
I’m typing this from home while I have my take-home chemotherapy infuser pump on. I was in the chair receiving IV chemotherapy yesterday, which went smoothly.
Many of the folks in the cancer community have told me that the third time is when you find out how chemotherapy will really go. The reason being that the drugs build up over time. Anyone who takes long-term prescriptions will be able to relate. You take your drugs daily and build a maintenance level—an amount of the drug persists in your system—in order to receive the benefits.
It seems that’s where I am now in all of this.
My mind was much more at ease going into the chair for my third cycle. With each infusion, there is chance for severe and immediate side effects: respiratory or cardiac arrest, severe and immutable nausea, or an instant headache. Luckily, I didn’t experience any of those.
It’s a less daunting task to walk into the cancer centre for chemotherapy that it’s ever been as I’m growing comfortable with the routine.
More side effects
Between my first and third treatments, I’ve been keeping a paper journal of side effects so that I can share them with my healthcare team.
Fatigue is still the killer, but it’s also mixed in with some insomnia, which makes it extra annoying. I’m being treated for my anxiety and depression now, which should help on the sleep front since I won’t be buzzing so much at night.
The neuropathy—tingling in my hands, feet, and throat—has established sort of a baseline. Between cycles one and three, it’s become more predictable.
For my hands, I have a pair of gloves that help me get cold things out of the fridge and freezer. On a worse day, grabbing something cold feels like I’d imagine it does to grab a log from a fire. It’s an intense burning sensation. On good day, it feels like my fingertips are asleep.
My feet, against the wood floor, feel like they’re asleep. Occasionally, they feel warm and numb. Between thick socks and some indoor sandals, I’m able to keep this at bay.
Drinking anything other than room temperature beverages results in a feeling of numbness and a sharp pain.
The upside so far is that these are minimized a bit by the middle of the week after my treatments. So, when I receive treatment Friday through Sunday, I’m back to a lesser version of the above by Wednesday or Thursday. On those off weeks from treatment, I’ve really been enjoying popsicles and ice cream.
A new way to play
This Wednesday, I’m having surgery to get a port-a-cath installed in my chest as a more permanent way to receive IV drugs. At that time, the PICC line in my arm will be removed. Since the port-a-cath is placed under the skin, it means that I’ll be able to get it wet. I’m looking forward to getting in the water a bit throughout the summer and to being able to shower without having to keep my left arm dry.
It’s a routine procedure with minimal risk, but I will be sedated for it, so I’m planning to take the day of to recover.
Chemo still sucks
It still sucks, but it feels as if it’s becoming more predictable to receive chemotherapy. My side effects are well-managed.
I’ve sought help in dealing with the mental health aspects of my diagnosis. I’ll have more on that later.
But, in closing, I truly feel that I’m doing everything I can to focus on being the patient and working toward getting to the always desirable NED status (no evidence of disease).