I am going through my blogs here as on my old community page on LotsaHelpingHands. The account below of my side effects 5 weeks after I started chemo in 2022 stayed on draft. I wrote it, reviewed it, decided it was too whiny, and published a gratitude post instead. Which I was…I am… grateful. But I realize that even early on I was curating a “model cancer patient” narrative. This is a notion I am still trying to dispel in my own personal dogma even now 2 years after I became breast cancer NED (no evidence of disease) and rang the bell.

So here’s a candid, not so grateful chemo account rescued from draft 4 years later…

My next (3rd or almost halfway!) chemo cycle is this week. The last 2 weeks were pretty miserable following my 2nd infusion cycle (9/28) it was all I could do to not let myself to think about how I was feeling. I was not writing, journaling or talking much about it with friends. We made like hermits pretty much all of last week just dealing with my not feeling fantastic. Doing what needs doing.

The worst of my side effects lasted a bit longer this cycle. Whereas on the 1st cycle by day 6 I was back at work, tired, but generally functioning, this 2nd cycle was a tougher nut to crack (i.e. it really sucks). I lost 11 lbs in less than a week. This was only partly because I wasn’t eating. I was also losing fluids because I had pretty bad diarrhea for 2-3 days which was preceded by bad constipation. I was back at work, but it was rough. I couldn’t concentrate, I needed a lot of bathroom breaks and I was feeling really weak, emotional and frustrated.

I called my care team on Tuesday and they seemed concerned. They said that if I couldn’t keep the diarrhea and the nausea (more on that later) under control I’d have to return to the infusion center the next day so they could keep an eye on me and pump me with IV fluids if need be. They were also adamant I max out, if I needed to, the prescription medications I was given to manage my side effects.

I haven’t mentioned before, but yes I have been stingy with the prophylactics. Mostly because the side effects of these medications also need to be managed. For example, to prevent nausea and vomiting, I have 3 prescriptions: the first one causes constipation and severe headaches (the headaches are bad enough that I have to take the strongest prescription NSAIDs I have); the second one causes drowsiness which I wouldn’t take during the day because I’m meant to be at work instead of, you know, asleep, and the third one is typically indicated for anti-anxiety which when I take puts me in a really blue (depressive) mood once the medication wears off. I told my care team all my reasons, but they strongly suggested I take them. Suggested I try switching back and forth.

Another side effect I’ve been is managing is this confounding bowel movement. I am alternating between taking senokot and loperamide. Speaking of the latter, my care team said I could take 8 doses in 24 hours. I was barely taking 2 (the IFU says 6). They reminded me of what they told me before chemo started: do not let yourself suffer or be miserable. Mind you, this wasn’t why I wasn’t taking the medicines. I am not that much of a martyr. And like I always say I am about as hypochondriacal as they come and I will self-medicate if I felt I needed to. It just seems like with this treatment I’m on, I’m just playing whack-a-mole with my side effects and medications.

I did pill-pop OTCs and prescriptions on day 6 until the worst of my chemo side-effects were kept at bay and I could eat, work, somewhat function. Of course at some point over a 24-hour period I think I’d taken 15-20 pills. On a normal day, I only have 2 prescriptions tablets I take regularly which includes managing my now burgeoning high blood pressure.

I am ok. The worst is past for this cycle. But since I am documenting, this is usually when I am most aware of the more “benign” (haha!) side effects. They’re not life threatening, but they make life feel a little less “unthreatened”, nevertheless.

There’s the dryness — everything is dry: my throat, my nose, my skin. I have biotene mouthwash I use for when my mouth feels very dry. I spray saline into my nostrils regularly otherwise it gets quite dry in there and bleeds. I also diligently moisturize my skin with Aquaphor. Those nice-smelling lotions I favored in my former life just won’t do.

I also continue to get sores in my mouth and throat. It hurts a bit to swallow and they do make it challenging to eat food with texture. I have peroxyl mouthwash I use to help with this and I stick to soft foods when I can. My gums bleed fairly easily too. Ask me how much I loved to floss. It’s sad I can’t floss right now. Nurse suggested I use water-pik. I told her but that’s not the same, it’s not <I mime flossing> which is so satisfying.

My taste buds are also on some hiatus. All food tastes bitter, sometimes, metallic. I still pretty much put vinegar on everything (even spaghetti). I can’t explain why it works so I can’t much recommend it to any chemo patients. It just works because I’m just weird enough to think it does. Thankfully, sweet is often just sweet. Not necessarily delicious, mind you (delicious is probably next year when chemo is over), but let’s just say those 11 lbs I lost ain’t staying gone not when there’s mango ice cream from Mitchell’s, red bean moon cake at 99Ranch, and Dynamo Donuts is my neighbor.

I’m nearly but not yet completely bald. It’s patchy. I still have areas of buzz-cut hair. These parts are really sensitive. Which why I can’t really wear wigs. As had been advised in some of my readings, I’ve been massaging my scalp with a soft cloth (in circular motion) when I’m in the shower and afterward with coconut oil. I don’t know if it’s right, but it certainly feels good. Don’t ask me about how I feel about being bald because I honestly don’t have an answer. I have an almost clinical relationship with my balding head at the moment. I rarely look in the mirror, and when I do, again, clinical. I’m afraid if I looked with kinder eyes, I’ll break.

My peripheral neuropathy is also getting a bit more pronounced on my fingers. I haven’t lost sensation there, but it’s tingly and looks perpetually prune-y. I hope it doesn’t get worse. It’s an annoyance right now, but I’ve heard cases when it’s serious and can cause balance issues or complete loss of sensation. I am keeping my prune-y fingers crossed they stay just in the annoying state at the worst. I’d been told that there isn’t much data on the efficacy of ice-ing fingers and toes to prevent neuropathy. I’ve only done it — with my fingers — when they hurt. I don’t have the patience to do so on other times.

I’ve also started to notice areas of hyperpigmentation. I have been looking for some information, reports, articles or studies on dermatological adverse effects of chemo. I found some that mention drugs like taxane have been correlated with some form of pigmentation, but I’ll have to read up &/or ask my oncologist if this is truly to be expected. It feels like a “are you really allowed to be vain right now?” side effect. It feels like, as with the hair and the neuropathy, this is a “when you’re done with cancer treatment” December-problem.

Then there’s the nausea. I am perpetually nauseous and constantly needing to dry heave (nothing ever comes out), bent over the sink, (not) crying in frustration. I do take medications prescribed when possible: not Zofran (terrible headache), not Ativan (makes me too sleepy), but usually Compazine (my go-to but makes me sleepy so I don’t take on days I work at least until the evening). Dr H (medical oncologist) added a new medication for me to try which could also make me sleepy but its anti-emetic effect is more long-acting that should I take it at night I may still enjoy the benefit through the next day.

“Enjoy” really is a strong word.