Torture Chair

I finally finished chemo not too long ago, and finally feel up to writing about it.

I have journaled daily via paper and pen (and still will, there’s more to go) about my experience. Two surgeries, a week apart, are up next at the end of the month. It’s gonna suck. I’ll be getting a DMX and then a DIEP flap reconstruction. Parts of me will look 25, albeit like Sally from Nightmare Before Christmas.

Many people didn’t have horrible issues with treatment. I, unfortunately, did.

Any one of the symptoms that I had (with the exception of partial hearing loss and neuropathy) by themselves aren’t that bad. But add them together all at one time and it makes for a miserable experience.

I’ve written a list of the side effects and other things I experienced, so that I don’t forget what I’ve made it through. They were:

• Random, sudden, unexpected bloody noses
• Nearly constant runny nose – drip, drip, drip
• Flaky, dry skin
• Constant ear ringing
• Temporary loss of hearing – high pitch sounds
• Rashes – chemo rash, Dex rash, adhesive rash.
• Eyes hurt from dryness
• “Fuzzy” teeth sensation, later determined to be mouth dryness
• Fatigue X 100
• Loss of all body hair (Except on my head, thank you Paxman)
• Chemo cough
• Needing multiple naps a day, even after 12 hrs of sleep
• General malaise
• Mouth sores
• Essential tremors of my head
• Greasing my privates from my pubic bone to my tailbone with ointment, to protect my skin from the chemo waste that burned my skin
• Nose zingers – like getting soda up your nose as a kid
• Lack of sleep, jitters, and arrhythmia from Dexamethasone
• Bone pain, sometimes severe
• Anemia
• Severe low white blood cell counts
• Dizzyness and headaches
• Neuropathy in my fingertips, probably permanent, but hopefully not
• Heartburn
• Nausea
• Stomach pain
• Dehydration
• Mucositis
• My once long, strong fingernails are breaking off and peeling
• Toenails breaking
• Diarrhea – sometimes 10x a day
• Muscle aches and spasms
• Everything tastes like dirt, no pleasure in food
• My beloved coffee tastes awful
• A 20 lb weight loss and the inability some days to choke down more than 400 calories in a day
• Each day of chemo lasted about 7 hours from arrival to departure
• ER visits and hospital stays for neutropenic fevers, viruses, and arrhythmias
• Echocardiograms every 10-12 weeks
• Multiple MRIs, Xrays, CT scans, bone scans
• Installation of a port and then blistering reaction to Tegaderm
• Metapneumovirus and then pnuemonia a week later, due to no immune system to fight anything off

I’m not one who likes to take medications, even for a headache. Yet I found myself being pumped up with all kinds of toxins designed to save my life or to counteract the side effects of those drugs. I don’t know how I will ever detox from all of this. The drugs that I had to take together, all overlapping at the same time (for the most part) were:

• Docetaxel
• Paclitaxel
• Carboplatin
• Herceptin
• Perjeta
• Nuelasta
• Kanjinti
• Benadryl
• Dexamethasone
• Dexthomorphan
• Levothyroxine
• Augmentin
• Benzonatate
• Zithromax
• Immodium
• Claraitin
• Prilosec
• Diphenoxylate
• Phesgo – which I’ll be on until Feb 2025
• Possibly Kadcyla – if my biopsies come back with residual cancer

I am grateful for being able to keep most of the hair on my head. Although, because I didn’t look sick, people expected me to act as if I wasn’t sick. I could have used some sympathy, this was tough to go it alone.

I am also grateful for a handful of women I met at a cancer retreat in March 2023. If it weren’t for their guidance and suggestions, I don’t know that I could have made it this far without losing my mind. This was a different type of cancer this time, compared to my first go-round. Their experiences with HER2+ cancer helped guide and reassure me.

I am thankful for my youngest son who went with me to three of my chemo, so that I didn’t have to always go alone.

I’m thankful that I met my deductible on Jan 3rd. All my treatments this year are covered.

I am thankful that I was spared (mostly) from “chemo brain.” While I do struggle with word recollection and memory issues, they don’t seem as bad as others have complained of. (I do have my moments!)

I am grateful to my neighbors for bringing me food when I didn’t have the energy to cook, for sending texts of encouragement, and the rides to/from my appointments when needed.

As an introvert who would rather hide and shy away from others, I am grateful to those extroverts and motherly types who insisted on helping me out in anyway possible, despite my insistance that I was okay (I was not).

As I mentioned, two surgeries are next. I’ve read most people have someone to help them 10-14 days after. I don’t know that I will have anyone, except for maybe the first 2-3 days home. Maybe I’ll write about it, maybe I won’t. I’m just glad to have chemo done and no more torture chair.

I don’t know what good will come from this bad. The will to keep fighting… it isn’t that easy anymore.