Drowning

The inevitable has happened: eating has become a challenge. While I was hoping that this possible side effect would miss me, it has hit me square in the mouth.

It began several weeks ago when water started to taste funny. Then things began to taste under-seasoned. In the past week or so, the radiation and chemo have begun to irritate my throat to the point that it’s now hard to swallow food. I sneezed this morning and it felt like I had been shot in the neck. I’ll never skip my allergy spray again.

And now the search for foods I can actually eat with minimal pain is in full effect. Taste and flavor is no longer a priority — I can literally put a pinch of salt directly on my tongue and it barely registers. I’m in search of soft foods, like a teething baby.

It’s really made meal-time difficult for me. I feel like an outsider in my own home. I get a separate meal from everyone else — whereas I normally cherish our family dinner. On top of that my severe headaches and fatigue keep me physically isolated as well. I’m alone, stranded, while the world goes on around me. Like drowning in a crowded pool.

Balancing Frugality

Radiation 18 of 35. Chemotherapy 3 of 7.

Frugality is in m blood. My nature is to make sure my (and my family’s) needs are met before sharing resources. This comes from my upbringing, as my parents were poor immigrants to this country to had to fight and scratch their way through life. I remember my mom clipping every coupon and saving those green stamps (remember those!) that I think you got as loyalty rewards.

In college, my mom worked in a McDonald’s where she got to keep the sandwiches that were too old to serve. We got our hair cuts at a cosmetology school. Eating in a restaurant was definitely a special occasion. It’s my nature, and I’m trying to do better.

Over the years, Erin has tried to pull me out of my penny-pinching shell. She regularly donates to NPR, the Human Rights Coalition, gives micro-loans via Kiva to poor folks in Africa or wherever. Once, she met a (probably homeless) man that was shoeless, got his size, and went back and gave him a pair that were sitting in our closet unused. We are the yin and yang of this equation.

If I learn nothing else from this experience with cancer, it will be generosity. We recently wrapped up a fundraiser auction to help with the coming onslaught of bills, and I was absolutely floored at the spirit of giving I witnessed firsthand. Many items in my auction sold for more than the actual value! This makes no sense to my logical, linear brain!

I’m going to do better. It’s not much, but I took the first step yesterday and donated a non-trivial amount of money to a stranger hospitalized with a liver issue on GoFundMe. For you generous, giving souls out there, this may be no big deal. But it’s a big first step for me.

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.

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.

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.

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.

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.

Side Effects

I had to do a double-take at the container in my hand. I must have just picked up someone else’s god-awful concoction of metal and bitter aspirin tannins and taken a giant drink. But the tumbler in my hand was mine. A Father’s Day gift that has proven the test of time — who in their right mind would spend this much money on a goddamn cup? — and is almost always by side.

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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.”

Continue reading “Everybody has a Plan”