cancer – dad perfect

February 21, 2022

Nemesis

My never-ending rotation of side effects presents a new combination of villains every day. It’s like a new Avengers movie every time I wake. This past week’s nemesis has had a common denominator among the cast of bad guys — a new nemesis: phlegm.

When one’s neck is exposed to intense, daily, DNA-disrupting levels of targeted radiation to kill a malignant tumor, one of the major side effects is that one’s phlegm-factory goes into overdrive. In a healthy person, the normal amount of phlegm just goes away or something science-y like that, but it’s not like that for me.

Did you know your throat is divided into two paths? Apparently, there are two passages back there, called pyriform sinuses. In my case, my left tunnel is mostly blocked due to Mr. Tumor McTumorface, and its current severely inflamed status, thanks to radiation. Right now it’s so blocked up that I’ve gotten spaghetti noodles and pills stuck there. The other thing that gets stuck there? Phlegm. Especially when I sleep.

For the last seven nights, I’ve been training myself to sleep on my right side, so that the drainage is assisted by gravity. It mostly works. But for my entire life, I’ve slept either on my left side or my back. Neither of those two options are good for my phlegm issue. Do I get an award for the amount of times I use the word phlegm in a single post?

Retraining myself to sleep on my right side just feels weird. It’s like wearing joggers backwards. It really shouldn’t matter, on the face of it, but it just does.

I’ve met my nemesis, and it’s name is Phlegm.

January 25, 2022

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.

January 19, 2022

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.

January 17, 2022

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.

January 14, 2022

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.

January 13, 2022

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.

January 8, 2022

Mr. Brightside

As much as humanly possible, I try to look at every situation from multiple perspectives. Perhaps it’s from my photography background, or my high-school journalism days, or some other combination thereof. Regardless, I often ask myself what can I learn from this? Call me hopelessly optimistic if you want, but I look for the silver lining. If I’m able to (and I’m certainly not able to 100% of the time) disassociate from the emotion of the immediate situation, there is almost always another angle to approach it from.

Cancer is the situation now. This is the darkest cloud to ever form in my sunny skies.

January 7, 2022

Alone. With Friends.

I’ve never felt more alone.

The path I’m on is mine alone. I know I have many, many people who love and support me, but even if they could, they can’t do this with me. I’m reminded of this every morning when my amazing nurses place my rigid plastic mask over my face and lock it into place. My eyes are held shut as I’m held into millimeter alignment for the radiation beam. The many daily jaw and tongue muscle exercises. The list of solitary activities goes on.

January 6, 2022

Sobering Thoughts

I caused all of this. My cancer is my own creation, a consequence of years of smoking cigarettes and working in smoke-filled bars, nightclubs, and restaurants. Hell, I used to request to work the smoking section of restaurants when I was a young server, because the smokers tended to drink more booze and run up larger tabs.

Alcohol is another major risk factor associated with my type of cancer. I’ve had alcohol nearly every day since I was 21. I can probably count on two hands the number of days that I abstained. It’s been my sleep crutch ever since I first discovered its sedative effects. (I know, it’s not the same as sleep, save your comments.) It used to take me hours to fall asleep, but with booze I could reliably get unconscious on a regular time table.

Plus, I liked it a lot. I was good at drinking.

January 5, 2022January 5, 2022

Radiation Begins

I’m strapped onto a motorized table. My hands grip adjustable holds that are meant to help align my upper body to millimeter accuracy so that the powerful, invisible radiation beam hits its intended target: my tumor. Red lasers find my alignment tattoos. My entire head is encased in a custom mask that was molded to my face during my simulation just two weeks ago. The mask is securely attached to this motorized tray, which will immobilize my head and neck.