My first self-administered subcutaneous shot

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That’s a winning blog post title right there …

Yesterday was pump disconnect day; I went in to Fred Hutch and they removed the pump that had been slowly injecting 5FU chemo into my system. I read a lot of stories about how pump disconnect day can be really hard; many in the Colontown community said they requested IV fluids to help ease the process. I didn’t request any extra fluids and I didn’t really have any problems. My main issue was fatigue and brain fog — no doubt caused by steroid-induced lack of sleep.

After they removed the pump, another nurse taught me how to self-administer Nivestym shots. These shots help keep white blood cell counts up (counteracting the chemo process, which drives them down). These shots go in subcutaneously — into the fat below skin. After losing weight earlier this year, the only extra fat I have to work with is in my belly. My instructions are to give myself the shot 5 nights in a row (starting tonight), but you need to do it in different places each time. I used a little mole down in the bottom right side of my belly as a starting point; I’ll work around in a semi-circle on subsequent nights. I have never given myself a shot before, but it wasn’t too bad.

I’m keeping track of these shots on the kitchen whiteboard, along with other chemo quick reference. Really hoping I can actually memorize how to pronounce some of the chemo drug names.

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Post-infusion day: recap

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I’m copying a summary I just shared in an online forum (Colontown – highly recommend this to all colorectal cancer patients!):

– I got very little sleep last night (like maybe one hour) due to the steroids. 

– I was surprised to find I wasn’t tired this morning (perhaps I was still artificially “energized” by the steroids). 

– I’ve had no diarrhea, which is surprising, given the irinotecan (aka “I run to the can”) that I received yesterday. Instead, I’ve been more on the constipation side.

– didn’t really have any notable nausea today, but I did notice a decrease in appetite.

– I’ve had some intermittent difficulty swallowing. 

-No other noticeable signs of neuropathy. 

Around 7pm this evening:

– Felt tired and dizzy after walking my dog. 

– felt brain fog / confusion, and fatigue. Tried running  quick errand to the grocery store, and that was overwhelming. 

Hoping to get more sleep tonight. 🤞 Not sure if I will take tomorrow off from work as well. That feels overwhelming to think about right now.

Fun with FOLFIRINOX

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Just a quick status here as I am somewhat out of it — bullets are easier for me when my brain is tired:

  • The on-site infusions wrapped up today around 3pm, and they then got me attached to a pump, which is slowly administering another chemo drug to me over the next few days.
  • I have the pump in a fanny pack strapped around my waist — the pinnacle of style!
  • I am doing the FOLFIRINOX chemo regimen via the Janus clinical trial.
  • The chemo drugs are delivered via sequential infusions; all via my port that was installed a few weeks ago.
  • I’ll write more about the first two injections in a future post.
  • Current side effects are not bad. No serious nausea (yet). Main thing I’ve noticed is jitters and an unpleasant “amped” feeling, which I believe is due to the steroids that were part of the “pre-chemo cocktail” I received today. The purpose of this cocktail is to stave off the side effects.

I’ll be off work again tomorrow as I understand that side effects can get more pronounced on the day after the infusion day.

Chemo day 1

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Here we go! Pre-meds are going in via my port now (anti-nausea, anti-diarrhea — to proactively prevent most common chemo side effects). Actual chemo infusion will start shortly.

I started off the day with a smoothie that included three ingredients from my mom’s garden: chard, kale, and green beans. Thanks Mom!!

Calm before the chemo

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We are on vacation this week in Westport, WA: a family tradition. Perfect timing, as my radiation side effects subsided about a week ago.

On this vacation, I’ve been focused on a healthy diet, exercise, and minimizing stress. I think I am mostly succeeding 🙂 although I did get pretty angry the other day, when I was trying to get a clear answer about billing for upcoming chemo (I think I have this question mostly answered now).

To answer Kurt’s question from my last post, I have indeed been making smoothies, every day! I’ve been tinkering with the ingredients. This one had spinach, almond butter, avocado, frozen banana, strawberries, blueberries, protein powder, and oat milk.

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A good problem to have

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Since I lost so much weight earlier this year, I’m in a position currently where I actually need to gain weight, if at all possible, as I prepare to start chemo a week and a half from now.

Nuts of all kinds are a great way to get protein, and some studies indicate certain nuts may be particularly effective at suppressing growth of cancer cells. But, nuts can be difficult for rectal cancer patients like myself; everything we eat comes with an “exit cost” — especially as I just finished up radiation treatment, everything is very inflamed and sensitive around the location of my tumor.

So I have been opting for nut butters. I have been putting nut butter in oatmeal and smoothies. I actually tried making nut butter in a blender. I used a “paleo mix” (walnuts, macadamia, cashews), some more cashews, and even threw in some roasted lentils.

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Chemo port implantation complete

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The IV port was successfully embedded in my chest yesterday. I am now a cyborg! The craziest part was when they shaved my chest ..

Fortunately, my chest-shaving experience was painless, nothing like a certain classic scene. Just like everyone else at Fred Hutch, the nurse who did this demonstrated masterful skills of distraction-through-conversation. He has many food-based tattoos, and that gave us plenty to talk about. The PA (who performed the implant operation) came in afterwards and introduced herself — I noticed she had tattoos on her arm as well.

The overall procedure was quick and painless. I was technically awake and aware of what was happening, but I was heavily sedated and happily daydreaming throughout the process. After the pain meds wore off yesterday, I was aware of the port inside my chest — it’s definitely an odd feeling. There isn’t really pain, per se, but I can see why they restrict you from any strenuous activity for 3 days after the procedure. My job now is to watch the area and make sure it doesn’t get infected. There is a visible bump where the port now lives.

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The view from Fred Hutch

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My first time in this waiting area on the 5th floor of Fred Hutch, building 2. It’s a nice peaceful morning as I await the port placement procedure. This is a new building, just opened last year. I love the thought that went into this building — my compliments to the architect! Lots of natural light in here, with visibility to Lake Union, and Gas Works park. This would have been a prime spot to watch the fireworks.

Well… it is peaceful no more. Someone sat nearby and they are blasting news on their phone, sans headphones. How do people not realize how rude that is? I need to start bringing my noise-canceling headphones with me more often, to help preserve my sanity in moments like this…

Initial chemo sessions confirmed

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I now have the schedule confirmed for my first three chemo infusions, and I’ve got these added to our trusty kitchen whiteboard.

Starting on July 22, I’ll be heading in to Fred Hutch every other week for a full-day chemo infusion appointment. There will be eight of these sessions, occurring over four months.

In preparation for the chemo, I’ll be at Fred Hutch tomorrow to get an IV port implanted in my chest. More about that in future posts!