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Grading

Radiation Day 15 of 35. Chemo 3 of 7.

This week’s Treatment Tuesday kicked off with a massive headache and a scratchy throat. That was before I even got out of bed.

I asked my counselor for an ice pack during our session today, just so I could get through my therapy. Talking today felt like trudging through knee-high snow, just laborious and seemingly pointless. Until the end of our session, when he asked me how I would grade myself at this point.

My first instinct was to say a “C” or “D.” And as I tried to step back and look at my performance objectively, I told him I was going to give myself an “A.”

I have been doing everything the doctors, nurses, and my family have asked, and more. The jaw and tongue exercises. Constant mouth treatments at home. The eating when I don’t want to eat. Drinking fresh green juices that Erin painstakingly makes and presses for me. Quitting drinking. Isolating as much as possible. Raising money.

So despite my inclination to grade myself harshly, I have to say that I’m doing everything required, and more, so I’m going to give myself an “A.” It’s the assignment that sucks.

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13 of 35

I’m a third of the way through radiation treatments. The left side of my head hurts constantly. Calling my throat sore would be an understatement. My voice is gone, like a thief in the night. Energy seems like a foreign concept to me right now.

I have my magic mouthwash, MuGard, Rick Simpson oil, Tylenol, and all of the other goodies on hand 24/7. I’m re-watching Seinfeld from the beginning. My ever-watchful wife protects me from the world and listens for my inaudible whispers.

My radiated saliva glands are hyper-active, causing so much build-up in my throat that I’m constantly coughing up excess aspirated saliva.

I am winning this fight. I am pushing on.

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Treatment Tuesday

One of the hardest things I do is to prioritize myself in my daily life. It’s how I got myself into this mess in the first place.

Tuesdays have become a de-facto me-day. It’s my longest treatment day, and the one that has me see the biggest variety of caregivers. It starts with mental health counseling, and goes on to radiation, chemotherapy, and some others get thrown in during the long chemo infusion process.

It’s like a weird 6+ hour day at the spa, all about me. Only with less pampering.

My caregivers all empathize with my long day at the hospital, but inside I silently grin. This is the most time I’ve spent on me.

I realize I may sound like a crazy person trying to draw a silver lining on this dark cloud, but it’s how I choose to see it. The process and the treatments are what they are, and aren’t what they aren’t. I get to choose how to experience it, and I choose joy.

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Covid + Chemo + Cancer

“Have you had a cough? Feeling fatigued? Nausea?”

Yes, yes, and yes. I had chalked all of it up to chemo & radiation side effects, especially after speaking with my radiation oncology nurse last week, who brushed off my nascent cough.

Now, speaking with the medical oncologist, this was more likely to have been Covid. The side effects were not likely to have been as dramatic as these symptoms, this early on in treatment. However a mild case of Covid, combined with a newly-weakened immune system, would easily explain that. Occam’s razor, and all.

I do not take anything back however. I am still grateful for my breath, my cuddles, my wife, etc. This second Covid infection of mine kicked my ass all weekend. I had small, random bouts of feeling “okay” mixed with feeling like absolute shit. Eating, drinking, managing medications, it was all a challenge and now that I’m starting to feel better I know I can handle it. Well, Erin can handle it. I’m just along for the ride.

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Cuddles

This week really smacked me in the face. All of my best intended plans got thrown by the wayside. Exercise, diet, energy… all gone.

How I’m doing? changes by the minute. I’m being carried by the current and right now the seas are getting rough. Will they get rougher?

Instead of boring you with details of a painful existence, let me tell you about what’s going right in my life.

My youngest loves to cuddle with me. I know the age window for this behavior is closing soon, but right now he cuddles like a champ. I can call him with my raspy, barely audible voice from across the house and he cheers me up, even if for just a moment.

Daddy is going to feel better soon, I tell him.

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Uninsured

When the Orlando theme parks shut for the pandemic, I was laid-off from my position almost immediately afterwards. It made economic sense, as they were my main clients, and they would certainly not be re-filling their wine cellars anytime soon.

Thankfully the Medicaid lifeline was there for us almost right away. They responded faster than the unemployment folks did! (Don’t even get me started on them, we are still owed unemployment from nearly a year ago!)

The coverage, while not great for offices and doctors in the “nicer” areas of town, was perfectly fine for our mostly-healthy family. It helped Erin get through some medical issues of her own, and healed Kai’s broken elbow. It also covered countless medication refills for my hypertension, etc. All at 100%. For the nearly 18 months I was unemployed, it was an absolute life-saver.

When I did return to full-time employment in Aug/Sept of 2021, I notified the state and found private insurance through the ACA website. I later found out that due to the pandemic, the state wasn’t dropping anyone from Medicaid due to the public health emergency. How thoughtful of them! So I canceled my private insurance (right as I was diagnosed with cancer), and happily stayed on Medicaid.

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Everybody has a Plan

“Everybody has a plan until they get hit for the first time.”

The quote has been shortened, twisted, and transformed over the years, but the original quote from Mike Tyson in August of 1987 before his fight with Tyrell Biggs is still true, and succinct.

There are many aphorisms about the value (or not) of planning. I don’t think most of them bear repeating, the one I often refer to is attributed to Werner Erhard, an infamous guru-type, who supposedly said:

“It’s easier to ride the horse in the direction it’s going.”

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Ode to Erin

I read somewhere that we marry a version of our partner, who they are in that moment in time. We’ve known each other for nearly 20 years, married for almost 16 of them. People and personalities evolve over time. My validation-seeking, social butterfly, partying-to-fit-in self would rather cuddle with my youngest and watch Star Wars spin-offs and David Attenborough nature shows.

My life-of-the-party socialite wife has traded the glasses of wine and cocktails for chamomile tea on the couch and a sensible bedtime. Post-shift after-parties until dawn have given way to boho decor and yoga schedules.

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