Fun with FOLFIRINOX

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.

Calm before the chemo

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

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

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

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

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!

a little thing

One thing I’ve learned thus far, with cancer treatment, is how rewarding it can be to just focus on one small thing that you can accomplish.

For example, I nursed this tiny aloe plant — which my kiddo picked up in after-school care, a few months ago — back to health. When I first saw it, it was totally brown, and basically appeared to be dead. I moved it into a new pot with different soil, and I have been periodically watering it (taking care not to over-water).

Now, I’m pleased to see that all the brown has been replaced by green, and a new leaf is appearing.

Admittedly, this is a little thing. But for me, it means a lot. I take a few moments with this plant every day, and I just appreciate it. I look at it as a symbol of my own cancer treatment journey. This would be one small piece of advice I can offer to others starting out on treatment for cancer, or other big scary diseases: find a little thing to feel good about.

Quick notes on my current status:

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Please consider your local food bank

As I was en route to daily radiation appointments over the past month, I passed by my local food bank every day. And I noticed lines of people waiting there … really, really long lines. I’ve donated to this food bank before, typically at the end of the year, and so I’m on their mailing list. They recently shared the following:

March, April, and May were the busiest months in the 41-year history of the University District Food Bank and due to this we’re facing a $200,000 budget shortfall.

I’m assuming they (like all other non-profits) receive fewer donations outside of the holiday season, so I just sent them another donation.

I encourage everyone reading this to please consider donating (either your dollars or your time) to your local food bank. Alternatively, another worthwhile charity to consider is Feeding America.

Penultimate is a great word

My sister sent me a text this morning, congratulating me on this penultimate day of my scheduled chemoradiation sessions. Indeed! Just one day to go. Well. Of Act 1. This play isn’t over yet — Act 2 (chemo) starts in about a month. That second act will be four months long, with new and more intense side effects.

But, I am looking forward to a nice break between the first and second acts.

While this first act has had its challenges, it’s also been teaching me things.

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Out from the hobbit hole

[editor’s note: I just realized I didn’t give this post a title, before. Fixed this, the day after posting.]

I was honored to virtually meet Brianna Mercker and Natalie Phelps today. They have both experienced their own battles with colorectal cancer, and are committed to raising awareness via their leadership and extensive volunteer involvement with the Seattle Walk to End Colon Cancer.

This was my first time speaking with others who are acquainted with my specific cancer diagnosis; it was very helpful and inspiring. I’ve also been appreciating recent connections with my friends who have other experiences with cancer — my colleague Matt (as a caregiver), and my friend of 25 years, Kari (she went through a different form of cancer, eight years ago).

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