Monthly Archives: November 2024

Goodbye Nivestym shots!

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I’m back! My last of the Nivestym shots (self-administered, to my belly) was last night. I will not miss that unpleasant evening ritual AT ALL! Really, the worst of it was the smell of the isopropyl alcohol as I applied the antiseptic wipes to my belly, before the shots. I started to associate that smell with the chemo infusion process (much isopropyl alcohol is used, as your IV port is accessed), and it made me nauseous — I had to hold my breath while I dashed off to stuff away the wipes in a trash can. All done with that!

And yes, I am done with chemo (for this year). It’s been a surreal experience, going through these biweekly hibernation cycles. My sis Katy was up for this last round; she got there on the afternoon of my last infusion day. I was already descending into the “zombie zone” at this point:

Katy helped out in innumerable ways while she was up here (thanks Katy!). She was staying at a nearby Airbnb and got me set up there for a few blocks of time in which I was really able to rest up (and sleep in) – a nice treat! The fatigue was deep again for me this last round; there was much horizontality.

And, plenty of chemo thinky thing (I saw this pic recently in a post in the Colontown online forum — I love this):

The cognitive effects of chemo — I found those to be really frustrating, and I wonder to what extent these resemble early-stage dementia. Ordinarily, I believe I’m a pretty decent communicator — I enjoy expressing myself, in talking and writing. But in the days after each infusion (especially the last few), communication became this stressful, difficult experience. I couldn’t remember what I had said before. Words escaped me. I got frustrated.

For example, one night last week — when all the stormy weather was happening, with the power outages all over the Puget Sound area — I had some of my worst side effects ever from chemo: throat pain, tight jaw, waves of dizziness. I got worried when I tried eating a bit and it felt like my throat started constricting. I ended up calling Fred Hutch to check on this — but I felt like I was making no sense in the phone call. I remember being embarrassed when, after I had rambled for a bit, they asked me if I could, um, summarize for them. What was the primary reason for me calling them? I apologized and explained it was my throat constricting — I was worried about an allergic reaction, to the oxaliplatin. They helped to put me at ease about that, explaining to me that it was too late after the last infusion for there to be an allergic reaction like that. I guess it was just more of my reactions to chemo — as anticipated, hitting me the strongest at the end.

At any rate, I have returned to the land of the lucid. Now, there’s a big question whether I will need surgery or not. Likely it’s a yes, but I don’t think I’ll get an answer on this until Dec 9. This Wednesday, I’ll be at Fred Hutch for an MRI and CT scan — those results, along with a sigmoidoscopy from the surgeon on Dec 9, will determine whether or not surgery is happening for me, come January.

In the meantime, I’ve got to say, I’m really happy to take a break from treatment for the time being. I get to enjoy the holidays this year! I don’t seem to suffer from scanxiety — I’m honestly excited to find out what the heck is happening, via the scans this week, and I’ll post updates here about that, in the upcoming weeks.

Fog

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I’ve been recovering from infusion #8; the last of this series of chemotherapy appointments that have been occurring since July.

Just a quick post here, as I’m still dealing with brain fog. Communication in general has been challenging for me since last Thurs, but hopefully things will get better here in the next few days, and I’ll get more of an update posted.

Ready for liftoff

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Fortunately my neutrophils are looking good today, moving in the right direction due to my nivestym shots. This means I am cleared for takeoff and can safely do today’s infusion. The neutrophils (a type of white blood cell) typically get reduced significantly due to chemotherapy. If they are too low — as was the case for me back in early Sept — they have to postpone the chemo appt. So, very glad to see that.

On a completely different note, I must thank my sis Katy for introducing me to Brooklyn Nine-Nine. I just finished the first season of this wonderful comedy. Highly recommended — I am finding that anything that helps you laugh during a serious illness and treatment stuff — is a very good thing.

Island of lucidity

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Today is number 8, the final infusion in my chemo treatment process. Very exciting! I am here at Fred Hutch; just got my blood drawn and am waiting to do the pre-infusion consult session.

No smoothie this morning (made one yesterday), but I had plenty of fresh fruit and berries. When I have a chance, I like to make the fruit look nice and pretty, to entice my 9-year old into eating some in the mornings.

Just like last time (in the days before infusion 7), I had a flurry of activity at work over the last three days. It’s like an island of lucidity that sits wedged between a big lake of fatigue on either side. Got to take advantage of it while it lasts!

It was honestly a positive thing for me being back at work, albeit briefly, this week. In the week prior, I was dogged by feelings of guilt and inadequacy — feelings that I am failing both at my role as a parent, and my role at work. I suppose all of that is normal for folks dealing with a chronic health situation.

But this week — this island of lucidity — I’ve had some wonderful quality time with my kiddo, and at work I feel like I was on my game and contributing in meaningful ways. All of which is very validating.

So. Central Rain

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Good news in the scheduling department; I’ve got some key appointments recently confirmed:

  • Wed. Nov 27 (Thanksgiving eve): Doubleheader with MRI and CT Scan. I’m happy these scans are actually happening this month, instead of December. As I’ve been quite anxious to learn what this long slog of radiation & chemo has accomplished.
  • Mon. Dec 9: Sigmoidoscopy and prep discussions with the surgeon. I’m assuming at this visit I’ll learn if I will indeed be undergoing surgery, or not. There’s a chance — they said around 20% — that the radiation & chemo may have completely wiped out the tumor (and affected lymph nodes), thereby rendering surgery unnecessary.
  • Fri. Jan 3: If it needs to happen, surgery will be on this date. This is a Low Anterior Resection (LAR) surgery.

This past week has had its ups and downs, basically as I expected. I am thankful (again) that I took the entire week off from work. In my down periods — which don’t really happen on a set schedule — the brain fog continues to mess with me.

I did have a chance to get out for a couple walks today; that was the most exercise I’ve had since before Halloween. Seattle in Autumn is a time steeped in sweet nostalgia for me, always bringing me back to my first year in college in 1992. As I was out and about today, I listened to music that was on heavy rotation for me in that time period. R.E.M. — particularly Reckoning — was in my ears likely every single day throughout the early 90s. Today, So. Central Rain really took me back:

And the Sundays … I’ve waxed nostalgic about them before, way back in 2012. Although I do espy one little white lie in that post: I didn’t have an actual Walkman — not the name brand version, too expensive! I think my portable cassette player was made by Sanyo or some such brand, and was suitably low-cost. The classic Sundays track for me will always be Here’s Where the Story Ends –

This song vividly evokes those Autumn 1992 memories for me, those solitary walks up and around Queen Anne hill in Seattle. Those first months of college were so exciting, and thoroughly formed the foundation for the rest of my life — but I recall it was also a very exhausting time, and I found refuge in music. As I still do, to this day.

Sleep is good

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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.