two thoughts

I can finally rest. It’s taken over a year without alcohol, and many months now without opioids, to get to the point where I can actually fall asleep and get a decent night’s rest, unassisted.

Alcohol was my sleep crutch for many years, and then opioids came along and helped me through the worst battle of my life. I’m thankful that the cancer is gone, and that I did not have to fight an opioid addiction, but I do miss that medically-induced sleep. Not anymore. At the risk of jinxing myself, I can finally sleep.

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Grossly Unremarkable

The title of the post was how my PET scan looked to the pathologist. No evidence of disease. We did it!

Anyways, in the nearly three months since the good news, my life has seemed like a non-stop victory tour and recovery mission. Mountains, rivers, and beaches — we’ve been on a mission to carpe diem, and it’s been a successful one so far.

My physical recovery has gone mostly well. Well enough that I have pangs of guilt when I hear about other survivor’s stories. My physical strength has returned, and with the 10ish pounds that I’ve lost, my physique is in a really good place. I look good for my age. I look great for a cancer survivor — I don’t have any physical signs of the trauma at all. Is that normal? I don’t know but I know I’ve worked my ass off to get here.

My voice has not recovered, and is the most frustrating side effect that remains. Nobody knows if it’s permanent or not, but I’m trying to get used to it. I’m fairly sure my kids are glad that I can’t raise my voice at them, or anyone else for that matter, any longer. It’s a win-win.

My first post-cancer surveillance scan is approaching. For years to come, the doctors will be checking my CT, PET, and other tests regularly. I’m a high-risk candidate now.

For me it means that there’s no time like the present.

PET Scan

Tomorrow is the 6-months to the date since I was cast, involuntarily, into this fight. Coincidentally, it’s also when I undergo my 12-week post-treatment PET scan, from eyes to thighs as they say, to determine the results of my fight so far.

In this give-me-convenience-or-give-me-death world of instant gratification, having to wait 12 weeks for anything seems absurd. The fact is, everyday brings a new wrinkle to the post-treatment fabric — I never know how my body is going to be doing every single day.

Today, after a normal, hearty breakfast, my system crashed hard. Fatigue set in after breakfast and never really let up. Water tasted normal today. My muscles still inexplicably ache, and headaches still make surprise appearances. And it was a great day, overall. I won’t bore you with details of the highlights of my life, but it was a great day.

I’d be lying if I said I wasn’t nervous about my scan tomorrow. But like every other day in this journey, I have to surrender to the moment and see what my care team and I have accomplished.

If another round of battle is necessary, I think I’m up to the task. The first fight seemed impossible in the thick of things, but with the benefit of elapsed time and mental distance, it is doable. It has to be.

Whatever tomorrow brings, I know that I’ve fought like hell. I’ve left no stone unturned and investigated all possible avenues.

CT Scan

It’s been exactly six weeks since the last time I’d laid on a motorized tray, waiting to be inserted into a machine, and here I was again. As the days and weeks have passed, it’s gotten easier for me to relax and forget the pain and agony of the past weeks. But today, at my first follow-up I’m confronted with those memories by the place I’m in and the process I’m undergoing.

Recovery has been progressing nicely. My taste buds are working again, mostly, and the pleasure of eating has never felt better. Every meal is a discovery adventure, to see what works and doesn’t.

Oddly enough a new fatigue has settled in over the last couple days. Add it to my very scratchy left throat on my list of lingering symptoms. For some reason, I have started to hit a wall right around 5-6pm — my energy just runs out.

Post-exercise soreness has taken on a new meaning as well. While my muscles have atrophied and my body mass has decreased, I had started to begin some light exercise like walking, cycling, and light rock climbing. I even did some time on the rowing machine. It was too much. My muscle aches, post-treatment, are debilitating. And of course it doesn’t really manifest until I stop moving and lay down for the night.

Great timing.

As I’m in the last days of 24/7 opioid delivery, I’ve discovered a new pain.

I guess I’m going to have to be patient with my recovery, and ease back into reality a little slower than I’d prefer.

One Month Down

It’s strange what my mind remembers. Viscerally, I know that there were moments and long spells of intense pain, searing headaches, and tons of various comforts. A month ago I was on a vegan, liquid diet, thanks to my throat getting cooked like a microwave.

And yet, a month past my last treatment, those memories seem long ago, as if from a past life. They don’t dominate my mental story of this journey. It reminds of how many mothers report the experience of childbirth as an overall positive experience, and the memories of the intense pain fade quickly afterwards. Perhaps my optimistic, positive worldview of this entire experience helps my memory focus on the recovery, and not the pain of the past.

Week 4 post-treatment has added on to week three’s progress. My energy continues to improve (chemo-induced anemia must be improving!) and I’ve added some light exercise back into my routine. My new Apple Watch steadily reported my walking pace progress, as it went from snail’s pace back towards my before-treatment speed.

My liquid diet is behind me, thanks to powerful pain management and my body’s fast healing response. I do still drink Orgain vegan protein shakes, but thankfully it’s a supplement and not the main course. Certain tastes are starting to return, slowly, and it’s anyone’s guess as to what I’ll be able to actually enjoy with every meal. Every meal is an adventure!

On to the next few weeks of recovery. Who knows what adventures they will bring?

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.


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…

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.

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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.