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The Home Stretch

Radiation Day 31. Chemo week 6 of 7.

Since November 17th, my life has been ruled by cancer. Preparing for treatments, fundraising, scrambling to find insurance, treatments, side effects, etc. As I near the end of the treatment phase of this journey, mixed feelings have emerged.

I will have to find a new way to fill my days. There’s only so much streaming I can watch, Wordle I can play, and naps I can take. During the first few weeks of recovery, the only thing that will really change, at least as far as my schedule is concerned, is the five-days-a-week treatments. I’ll still be immunocompromised, weak, and fatigued. And now with even less activity!

In a weird way I’m going to miss the daily radiation routine. Giving the technicians my full name and birthdate each and every time, even though we are close compatriots by now. The daily zen practice of strapping into the tomotherapy machine, head restrained in the rigid plastic mask, was therapeutic, in a weird way. Maybe I’ll try those sensory-deprivation floatation tanks that people on the west coast have been talking about for ever.

I’m also going to miss the weekly chemo days. It was my “spa-day” in another cruel twist, almost an entire day focused on my wellness and health. I’ve got to find another way to incorporate that self-focused wellness into my routine. I think we all do.

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Steady

Radiation day 28 of 35. Chemo week 5 of 7.

After another couple tweaks to my pain management, things are mostly stable now. The headaches have become far less frequent, and thanks to my ridiculous-looking gel pack head wrap contraption, easier to address.

The doctors and nurses have warned quite clearly that we are not out of the woods. When active treatment ends, the pain and side effects can linger on for weeks. And we will not have any conclusive results for at least 12 weeks afterwards. Three months of hopeful waiting and recovery, keeping my mind off of the nagging elephant in the room.

Keeping my weight up is the current challenge. My milk allergy precludes me from utilizing all the usual tools in the kit — the Ensures, Boosts, Benecals, and more all have milk in them. Nature’s most calorie-dense food, evolved to get newborn calves up to a healthy weight as quickly as possible, are off-limits to this human. How tragic.

Plenty of non-dairy substitutes exist, but none pack in the calories like glucose-fortified milk fat products. I’m back to what I used to weigh in my 20’s. There’s only so many of these plant-based smoothies I can tolerate in a day…

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Chaos Rules

Not even an hour had passed since my last entry before all my blabbering about pain management became obsolete. Something irritated the back of my throat and nasal passage, and the headache immediately kicked in. My temporary bravado to coat my throat with magic mouthwash and try new things became this weekend’s downfall.

Continue reading “Chaos Rules”
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Management

Radiation 23 of 35. Chemo 4 of 7.

The pain was not under control. In retrospect, this has become blindingly obvious, but in the fog of war it was not clear at all. For about two solid weeks, the only predictable thing about my condition was chaos. Everything was touch and go, moment to moment.

Pain management has changed everything.

Upon hearing that I was not able to keep my eating consistent, my oncologists intervened. I had been resisting taking the narcotics prescribed, as I didn’t want to become another strung-out opioid addict that we all read about in the New York Times —yet another statistic. By Tuesday this past week, I finally gave up all pretenses and asked about a feeding tube. I thought if they could just feed me through the tube, I wouldn’t have to endure another searing migraine brought on by trying to eat.

Dr. M had other ideas. He asked me to try a different approach: a skin patch. Over the course of 72 hours per patch, the little sticker affixed to a fleshy, fatty part of my skin would deliver a steady dose of a powerful pain medication, as opposed to the “peaks and valleys” nature of taking pills. The pills are still part of the regimen, but they now fortify instead of reconstitute.

Now, it’s not all quiet on the western front, but the chaos has been reigned in. While I can’t drive, and I still have to limit my in-person interactions with people, I can reasonably expect to feel somewhat normal most of the day. Pain while eating is still present, but switching to soft foods & mostly liquids has helped. The daily migraines have dialed down from a 10 to a three or four. Not great, but way more manageable.

With the pain finally under control, I am optimistic again. With a clearer mind, the coming challenges will be far easier to confront.

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Patchwork

Radiation day 21 of 35. Chemo week 4 of 7.

I’m on the patch. One of my oncologists heard about my difficulty eating, and has put me on a pain medication skin patch. It’s only been 24 hours since it was first applied, but the pain is already much more tolerable. Combined with my new, disgusting diet of “Very High Calorie” Boost shakes (530 calories in 8 ounces!), pudding, ice cream, and other calorie-dense, easy-on-the-throat foods, hope abounds.

The Boost has the viscosity of motor oil, and is about as pleasant to drink as that sounds. The odd thing about my malfunctioning taste buds is that I can still smell all the food I’m consuming, with none of the physical taste. It’s the La Croix of food.

The patch is applied to my lower back where it should keep me in a mostly catatonic state. I’m also not to drive or operate heavy machinery while under its influence. It definitely has slowed down my typing and accuracy. It’s like bubble wrap for my brain.

But at this point the doctors say it’s about pain management and weight maintenance. So I’m patched up and ready to go. 3 weeks left, then recovery. If I can beat this cancer, getting off of the opioids will be the next step. One thing at a time…

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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.

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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.

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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.