Infusion the Fourth

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This past Thursday, the 19th, my 4th chemo infusion finally happened. (It had been rescheduled, and then rescheduled again).

Learning my lesson from past infusions, I was all bundled up, and a lovely blanket (thank you, Aunt Donna!) kept me nice and cozy.

This infusion went .. dare I say it? Not bad. Certainly, much better than the prior two infusions. There was no nasty mania to contend with (which was the problem with infusion #3).

I believe much credit for this is due to the changes that I requested through prior negotiation: no antihistamines, and the inclusion of lorazepam (Ativan) up front. While they didn’t completely avoid antihistamines this time, they left out the Zyrtec, which was clearly the culprit for me going crazy last time. They still insisted on my taking Pepcid (another type of antihistamine), and fortunately I didn’t react to that. And, lovely lorazepam helped keep me calm.

So – lesson learned: cancer patients, advocate for yourself during the treatment process! Consider approaching the discussion like I did — as a negotiation. For me, this really worked.

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Assume positive intent

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I’m grateful to my neighbors who, after learning about my diagnosis a few months back, have coordinated on sharing home-cooked meals with our family. At this point, six different households on our street have given us meals. That is really cool actually, just to reflect on this generosity and kindness.

Tonight, as I ventured out on a walk with the dog, I ran into the neighbor who orchestrated all the meal-sharing, and I heartily thanked her. I felt self-conscious about being out and about, acting so healthy and … non-cancer-y. (Like, wait, was my “serious illness” just a ruse, to get a bunch of free food?) I explained that my chemo infusions have been on a bit of an unplanned pause … that my next infusion will be this Thursday, and after that I’ll be properly incapacitated for several days. (Seriously, I have cancer .. I swear!)

I am eager to get back on track with the treatment plan. I’m all done with whatever was bothering me last week. My appetite has returned with much intensity; I’m happy to see my weight going back up again, day by day.

G.I. No

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Wednesday before last, I went through an abrupt gastrointestinal shift. Two and a half weeks after the preceding infusion, I started experiencing nausea, diarrhea, and considerable loss of appetite. I hadn’t experienced any of these symptoms (other than minor nausea) with chemo, previously.

The following night was a tumultuously sleepless gastropocalypse with intense, recurring bouts of diarrhea. Nausea got increasingly worse, until I eventually vomited multiple times, in rapid-fire succession. I don’t vomit very often (it’s been years), but I just don’t recall it ever being this … extreme. I got hot and sweaty, and my eyes and nose were both streaming. My throat was sore for hours afterwards, like everything had been chafed raw inside.

Non-FB link

Delirious at 4:30am, desperate for a distraction, I stumbled upon “Believercise.” And verily, it didst suffice to bemuse me, and my soul was calmed. Somewhat.


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I had a calculator watch in the 1980s

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If you remember the 1980s, do you remember calculator watches? I remember I used mine so much that the tiny little buttons wore down. I also had a Frogger watch; it was tons of fun. It looked like this:

I was apparently so obsessed with these ‘80s technological wonders that I even dreamed about them. For example, this dream from Feb. 11, 1987 (I was in 7th grade):

Me and some other people were being held hostage by these crooks. The crooks had all these weird gadgets that they had stolen at different times.

One of the gadgets was a calculator watch. It could compose music! It could save up to 37 songs that a person made. In the directions, it said that the button that controlled the volume looked like this: 1/2.

I never could find that button.

Pivot

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I headed to Fred Hutch yesterday for chemo infusion #4, accompanied by my sister Katy. Lo and behold, after they drew my blood, they determined my white blood cell counts were too low for me to proceed with an infusion yesterday. They went ahead and rescheduled the infusion for next Wednesday, allowing time for my body to naturally build back up its white blood cells.

(By the way, check out Katy’s latest blog post about hiking, here!)

My care team is also going to have me increase the number of Nivestym shots that I self-administer, from 5 daily shots up to 7. While I don’t particularly enjoy sticking a needle into my belly (and the subsequent mild flu-like sensations, which last for 30-60 minutes), I understand the reason for doing this. I don’t want any future infusions to be canceled and rescheduled, if at all possible. This makes trying to maintain a work schedule incredibly difficult — not to mention the fact that Katy traveled up from Eugene, OR, for yesterday’s canceled appointment. Fortunately Katy was able to find a train south yesterday afternoon, but I still feel bad about the inconvenience of the cancellation.

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A marketer’s take on mortality

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I have a unique combination of a philosophy undergrad degree, coupled with an MBA. After earning the MBA from University of Washington, I spent several years in various marketing roles. Given my background, it’s perhaps no surprise that this article, published today, deeply resonated with me: Creative directing my cancer.

The author, Nathan Phillips, explores how a cancer diagnosis can open one up to deep insights, which I agree with:

Cancer connects us to our values, to what’s important and ultimately can shift our perspective so we appreciate living. Without cancer, it’s easy to forget. Cancer doesn’t just kill you, it makes you live. It increases your life experience by reducing your life expectancy. 

One key difference between this author’s situation and my own is that he received a “death timeline” of one year (maximum!) which he has now exceeded. To be clear, I received no such timeline; in my own kickoff discussion with my cancer care team, back on May 2, the message was upbeat: this is Stage 3 and it’s treatable.

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There’s also other things

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A cool thing about being 50 years old is that there are a lot of years to look back on and appreciate. I find it helpful to realize that, although cancer absolutely defines my current life experience — and is in many ways similar to massive, complex project management initiatives I’ve worked on — it does not define my entire life.

I was up to other things in past years. Fun things! For example, 14 years ago, I lived in Manhattan, and one time hiked the length of it. Looking back at the post, it’s surprising that the free map app I used at the time is still around; the map of my route is still in there. So many other free apps I used back then have long since died. I’m actually surprised my old blogspot blog is still around (with a link to a posterous blog, that long since died).

So, I may indulge in nostalgia now and again, to add a little variety to this otherwise cancer-focused commentary.

As a child, I was an obsessive chronicler of life’s mundane moments. Seriously, I have hundreds of pages of journal entries describing meals, what I learned in school that day, who was present at youth group, etc. Fortunately, I also kept a dream journal, and that’s a lot more interesting to review.

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Back to the land of the living

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I am feeling normal-ish today for the first time since last Monday morning. This past week involved, I believe, the most intense fatigue I’ve ever experienced. One way to describe it is simply that you’re not fully alive. For example, I worked (as well as I could) this past Friday, and I was in a meeting with many participants. In the meeting, I felt like a ghost, peering into a gathering of alive people: people whose brains function normally. It was similar to the experience on my diagnosis day — everyone sure seemed to be talking awfully fast. And normally, I am one of those people.

But this past chemo week, I was a ghost who spent much of the time in bed. Ordinarily my brain moves quickly in a multi-threading fashion (maybe everyone’s does?); there are usually a few things going on in parallel, one idea sparking another. All that shuts down when I’m a chemo ghost.

So, high level observations from chemo cycle 3:

  • The on-site infusion experience was so godawful BAD. That feeling of my jaw clenching, and the manic jitters all day long… holy hell, what a nightmare. I am all about medically mitigating these horrors in future infusions, via my friend lorazepam (aka Ativan).
  • As noted, much more fatigue this time, over the subsequent days.
  • As with cycle 2, pump disconnect day was hard. I drove myself to that appointment, but in retrospect, that was unwise. I was way too brain-fogged to be operating a vehicle. I’ll be enlisting chaperones for the remaining pump disconnect visits.
  • More nausea this time. It’s still not something bad enough where I feel I need to take the anti-nausea meds they gave me, but if it gets worse in future infusions, yes, I may give those a shot.
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Chemo-hibernation

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I was super-wired during the infusion on Monday. That feeling got pretty intolerable near the end of the irinotecan infusion. I was exhausted, yet very jittery. The nurse checked on me and seemed concerned. After someone else came in and they noticed my slurred speech (this did happen for me at the end of my first irinotecan infusion), they decided to give me something to alleviate that (can’t recall what it was).

I slept ok that night, and then the past two days have really been all about major fatigue. It’s like I crashed from the weird all-day mania that happened on Monday. Yesterday and today, I’ve been too exhausted to do really anything. Haven’t checked social media, and have had a hard time replying to anyone. Pretty dense brain fog — particularly today. Went in and got the pump disconnected this evening — that’s a wrap for infusion 3.

Currently on the fence about returning to work tomorrow AM. If tomorrow is anything like today, I won’t be able to function at work. Will see in the morning.

Today’s smoothie

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I am still at Fred Hutch, although due to the late time, I have been transferred to another building, where I’m now doing the irinotecan infusion. This part is 90 minutes and this started at 6pm. With some stuff to happen after this. Long day.

No big side effects currently, another than ongoing jitteriness apparently caused by my pre-chemo cocktail. And, fatigue and brain fog to the max, but … now sing it with me … “That’s what chemo’s all about!” (Sung to the tune of Hokey Pokey!).

So, let me leverage my current delirious chemo-addled condition to describe for you: this morning’s smoothie. I know people are curious. At least you, Tad! :). So here we go – try and guess what’s in there. All the ingredients revealed below!!!

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