Author Archives: Jonathan

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About Jonathan

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Off week

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Quick note here to say the last several days have been great. This last week was my off week (no infusion). It’s an on-again / off-again schedule. I was pleased to see that I felt basically all back to normal around Wednesday last week — that was one week after pump disconnect day. Energy level, appetite all back to normal. It is very nice to get a break!

It was great to see my sister Katy over the weekend. Katy introduced me to a product category I had never heard of before: hop water. This is just sparkling water, flavored with hops of various kinds. It seems many major beer brands have jumped on this bandwagon. I do find it most refreshing — thanks Katy for the tip!

In other news, we have been binge-watching Stranger Things (Katy and Daniel joined us for an episode!). Such an exciting show necessitates lots of popcorn. Our dog Sunny has a total obsession with popcorn. As can be seen here; he’s looking at the microwave with maniacal anticipation, as the popcorn pops away…

My next chemo infusion is tomorrow, and I’m sure I’ll be back to the world of fatigue at that point.

Memory lapse

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As I look back and try to recollect last week, it’s mostly a blur: I don’t remember much. I understand now what chemo fatigue is. For example. Sunday morning, I woke up feeling pretty good; I decided to take the dog out for a walk. After five blocks, I was wiped out, and needed to head home. I collapsed on the couch and couldn’t get up for three hours.

This is my “off week” (the infusions are every other week). I’m back at work this week, which is challenging, as I certainly don’t feel awesome. While the fatigue has diminished, it’s still a thing: I need to lie down often.

The olanzapine they prescribed (mentioned in my last post): me no likey. Yes, it knocked me out at night, but I was still a zombie from it well into the next day. And that was just half a pill. Not taking that anymore.

Not everything is bad. Chemo seems to enhance my sense of smell; I’m noticing various smells that seem new to me. Also, it gave me a strong craving for sautéed mushrooms. I cooked up mushrooms, garlic and greens over the weekend and it was unusually satisfying.

I’ll tell you, the worst thing is when I just can’t explain what’s going on. Such was the case last night, when I had a puzzling mixture of sensations: sore throat, watery eyes, blurred vision, numbness in legs. And no appetite. None of this made sense, and I ended waking up at midnight in a full-scale panic attack, struggling to describe any of this and wondering if it was serious.

I eventually got back to sleep, and I’m ok now. I’m realizing this is part of the process. Chemo causes a lot of intense stuff to happen in the body. And the side effects aren’t always easy to explain.

Over the past week, I switched my phone background to this 1904 painting by Diego Rivera. I’ve been staring at it a lot and finding it comforting — something else I can’t really explain. So be it; I’ll embrace the mystery.

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…