I have been floating in a haze of fatigue since my Halloween infusion. This cycle, the notable side effects are fatigue and brain fog. I’ve felt this combo before, during radiation and prior chemo cycles, but never quite like this. I simply don’t remember large portions of the last four days.

Here’s the good news: I’ve actually been able to sleep (a lot!) and thus I have escaped the trauma that afflicted me during the prior chemo cycle. I believe three things have helped:

• My mom gifted me with a reading pillow, which my friend James graciously delivered to me last week. It looks like this and allows me to sleep in a propped-up position. This helps address one of my chemo side effects: intermittent issues with lying down completely flat.
• I prepared very thoroughly for this chemo cycle. This involved a lot of work tasks (I’m taking this entire week off, for example), and non-work stuff, such as voting and bills. This freed me up to fully rest when the fatigue hit in full force.
• I was smarter about using lorazepam (Ativan) when I felt the bad signs coming on (basically the mix of anxiety-inducing symptoms I described in this post). Arguably, I’ve been too cautious about using lorazepam in past cycles. My prescription is a low dose (0.5mg), with instructions to take “1-2 tablets by mouth 3 times a day, as needed for anxiety.” In the past, I’d been hesitant to take it during the day, but this cycle, I’ve found that two tablets are incredibly effective in helping me bypass the bad stuff, via a solid daytime nap.

It is odd, and unsettling, to have barely any memory of such a recent period of time. I do recall a very strong craving for mashed potatoes (but literally I don’t remember the day or time when this happened). I didn’t have the energy to make any, and instead I opted for “The Gobbler” — a magical vegan Thanksgiving feast in sandwich form, from the good folks at Next Level Burger. It was very very tasty, and hopefully helped me in the weight-gain department (it’s 500+ calories).

Also on Sunday afternoon, I took advantage of a period of lucidity to make up a batch of chili — mostly based on this fine recipe, but I added lentils, kale, corn, and went for a sweet (instead of spicy) flavor, with some maple syrup and cinnamon. Really hit the spot.

Last night I was blessed with a very happy dream — no scary nastiness — it involved me in a filmmaking class, working on a project with fellow students. Lots of fun and laughter, with a sense of hope and discovery. I woke from that dream feeling calm and well-rested. I’ll take it!

Even though I am currently feeling peppy, I’m sure this will change in the coming days, so I’ll keep following my playbook-of-sorts and resting when I know I need to rest.

Onwards and upwards.

This round has hit me the hardest — particularly the last few days. Interestingly, the actual infusion day (last Thursday) was pretty uneventful. I felt surprisingly coherent as my friend Dorje gave me a ride home that afternoon. Pump disconnect day (Saturday) — which sometimes has been one of the more challenging days — also wasn’t too bad. The following Sunday and Monday, however — wow. Hard days, filled with periods of abject suffering: the typical mix of constantly-changing chemo effects (numbness, tingling, queasiness, sore throat) with some new elements: headaches, chest pain, and a weird extreme sore throat sensation that extended to my chest.

Cold sensitivity has increased, but that’s manageable and it’s the least of my worries. I have a system now where I always have a few glasses of water set out, so that they are at room temperature. Drinking water straight from the refrigerator is very unpleasant (feels like there are extremely cold shards of ice going down my throat). Also, I’m always wearing gloves when I head outside.

There’s a point where physical suffering is so extreme that you cannot distract yourself from it; it completely commands your attention and you’re just waiting for it to end. I was in that zone, over the last few days. Last night, I woke up at 1:30am and stayed awake through the remainder of the night. Lying down made things worse for me (I’ve had this before, a few times) — when I was lying down, the side effects were more extreme, especially with my throat (it felt like it was tightening). So, I couldn’t sleep until the side effects calmed down, which was 10 or 11am. It was a horrible night.

I know I have said this multiple times, but it strikes me how during these periods when I’m suffering through the effects of chemo, I do not feel like myself. My normal self is very planny, always striving, ticking through mental to-do lists. That self completely disappears, and is replaced with a zombie (as I often describe it) — prone to periods of staring, doing nothing. Also, certainly weirdly emotional. For example I read this article about Jenna Fischer and her experience with cancer, and that made me cry. I spend a lot of time just looking at art (in Facebook groups). I do not generally remember much of these days.

This afternoon, I believe I turned a corner for this cycle, and once again, started feeling like myself again. Still not 100%, but much better than the past few days. I am planning on returning to work tomorrow, unless I get hit with another sleepless night. My Mom recommended trying to sleep in a recliner (if I have more of the issues when I’m lying down); a good idea that I may try out tonight.

Only two more infusions to go! Next one is on Oct 31 … hmm, should I wear a costume?