Facebook reminded me that today is the one year anniversary of my first trip to the local Emergency Department to figure out what was wrong with me and my butt.
At the time, I really thought it was just hemorrhoids, maybe a fissure. At the time, the ED was packed with masked people waiting to be seem, some in a state of great pain covered in blankets and rolled into a corner to wait for a bed that was hours from becoming available. At the time, I thought my situation wasn’t worthy of keeping these people from their turn.
My wife and I stayed 12 hours in the waiting room before they took us back for a quick look-see up my bum. They didn’t see anything in their superficial exam. They didn’t go more than a fingertip deep. By the time I got back into an exam room, I hadn’t developed any new symptoms or demonstrated any of the things that brought me into the hospital in the first place. I was given the option to wait there for several more hours and check into a room for more examinations and tests or go home. If the symptoms returned, I was instructed to come back.
Fredonia was a kingdom so poor they could not afford the second “E” in their name. In liberating the nation, I restored that second “E”.
I post on Reddit every so often. Every so often, I’m serious. Someone posted to the colorectal cancer subreddit that they had just been diagnosed with colon cancer and was terrified. They were asking for reassurances. So I offered the following:
You will feel more confident once you know exactly what you’re dealing with. Once your cancer is “staged” it will guide your oncologist and surgical team to a course of treatment. It will likely be a combination of radiation, chemotherapy, and then surgery to remove the mass.
Knowledge is power. This thing will knock you on your butt and give you some rough days and weeks, but you will find strength inside yourself you never believed you had. You will find friends and allies everywhere. Look into local organizations that will help you with legal, financial, transportation, and psychological support. They exist. Look into them now or have a caregiver (partner, friend, family) start lining up resources. Your job will be to beat this.
I was encouraged by family and friends to keep a diary of my cancer journey. Aside from updates on my daily progress on Facebook, I really haven’t had much to say in this forum. But there is good news.
As of 1/10/2023, I am unofficially cancer-free.
I say “unofficially” because I am on the second wave of chemotherapy which is designed to eliminate any pesky cancer cells left over after my Halloween surgery to remove 16 inches of my colon and rectum. Pathology reports indicate no cancer in the samples taken from my body.
To quote my surgeon, “We got the bitch.”
The second wave of chemo is also the result of having to stop my first wave four weeks short due to nearly dying. Twice.
Swap the chair for a toilet and you have a typical 3AM for me these days. Sorry for the lack of updates.
A hard rain is a-comin’. I mean that literally. Thunderstorms and heavy rains for the next 24 hours.
Over the past 96 hours, I’ve felt like I’ve been laid out on a hotel bathroom floor after forgetting how many glasses of wine I had at the ex-girlfriend’s wedding where I was in the bridal party.
I know these entries have not been consistent, but it is hard to write anything that makes sense when my fingers keep hitting the wrong keys and my thought process swings wild from “ow, my ass” to “what am I neglecting to do today?”
The good news is that everything I’m experiencing is normal.
The bad news is that everything I’m experiencing makes me tired and uncomfortable. I am more than halfway through the radiation/chemo treatments in Phase 1. The cumulative effects are fatigue, cranky butt, stomach cramps, yelling at clouds, yelling at my asshole for being an asshole, and intermittent spells of uncontrollable yodeling.
The most nausea I’ve felt this entire time was waking up this morning to the knowledge that Dr. Oz may have won his primary for US Senate. Ugh. At least I have medication.
The details of my treatment are not the stuff that attracts a mainstream, “PG” rated crowd. Suffice to say this is the life of a toddler with the stomach flu on one side and the life of an old cat whose only passion left is for the elusive sunbeam.
Today was “consult day” with my radiation onco and my nurse. I rolled out the list of things wrong with me and they commiserated before saying, “Yep. That’s part of the deal.” At least Trogdor is having as bad if a worse experience for it. So I walk from the house to the car and back like Bill Bixby at the end of a tragic episode of The Incredible Hulk.
After posting yesterday’s update, my body decided it was time to evacuate all hands. I spent most of the day in bed or in the bathroom feeling like a misfiring rocket.
I did not sleep. I couldn’t work from bed. I watched a lot of videos and enjoyed the extra attention granted by our cat, Cleopatra. And my wife knew something was up so she made sure I had water and meds throughout the evening. I spent most of it drifting toward sleep before rolling next door to the bathroom.
This morning, I had my radiation treatment without needing to rush to a men’s room so things seem to be simmering down in Trogdor’s occupied territories. This was a special treatment day as I’m halfway through radiation and pill chemo. Yay. Throw a party. Kiss a random nurse.
No, don’t do that. That’s a felony. Don’t listen to me. I’m a scatterbrained dillweed this morning.
And I am also exhausted. I might be able to sleep a chunk this morning as I looked through my mail and thought I might be reading Latin.
But it is (nearly was by today National Nurses Week). So act accordingly.
Today also marks the anniversary of my first wedding to my wife. We’ve been together since Christ was running our D&D sessions. She’s been my rock, not only through this but the greater part of my life. My greatest gifts have come from being with her.
Wow, that came out almost like a reasonable thought-made-sentence!
But it is time to sleep. I need to call work and let them know, then email some people about things and hope the emails don’t accidentally summon demons with their horrid grammar and word choice.
No treatment or pills on the weekend. So I got that going for me.
The “Trogdor Killer” Varian 21ix, is a $3.5M machine similar to the one where I am face-down-ass-up for treatment each weekday for six weeks.
Still not married to a format or a title. Screw it, I’m not getting paid for this and I have about a buck fifty worth of energy left in a life that costs $10 a day to get shit done.
Yesterday, I met with my oncology team lead who was happy to hear I have not lost any weight and that I continue in my lack of alcohol consumption. I have tried to offset that “comfort” with food that will keep my weight up, but it caused my glucose numbers to spike in my bloodwork, despite my diabetes (T2) treatment. Carbs and I are old friends and if my old pal beer and I can’t see each other anymore – Carbs and me? We are gonna have the random bender once in a while, okay?
But the rest of my bloodwork is in the expected range after three weeks of swallowing poison and having my ass lit up for five minutes a day by 1.8Gy (gray) of radiation. I am glad to report that I suffer only fatigue and catlike napping from the laundry list of progressively horrible side effects I was provided by a nurse at the top of this process. That’s not to say it’ll be worse down the line, but I’ll take what I can get.
Of course, the actual war zone down at the junction between my colon and rectum is delivering a daily dose of havoc on me to the point that I consider a work station set up in the bathroom at least once per day. But that’s not a “potential” side effect. That’s the reality of my life at the moment.
Today, I had my weekly check-in with the radiation onco, who is a great guy. He listens and has a great manner about him along with a good sense of humor. I am where I should be in terms of the treatment and he’s there to address any concerns or problems. As I have few, our meetings are short. I like short meetings.
And I will always restate that I have a mountain of blessings and fortune to offset the slightly waning sense of existential dread I feel every morning when I sit in the waiting room of the radiation center. I am fortunate that the professionals at the Hillman Cancer Center have been all the good and positive things that I need to get through this. They are professional, upbeat, kind, personable, patient, and deliberate in their action. They know this is serious work and deal with far more severe cases than mine. I am so in awe of them that I do my best to be respectful and pleasant. Plus, these people are literally saving my ass.
Friday will mark the halfway point of my first stage of treatment. There’s no way to track Trogdor’s demise in real time, but I’m definitely feeling different. It is hard to explain that clearly, but aside from the feeling that I just woke up after an hour nap and three days of constant wakefulness, I think this is progress.
Day 115 of the overall journey, Radiation Day #9. Still not King of Freedonia.
I don’t have treatments or take my chemo pills on Saturday or Sunday, which – as week 2 comes to an end – gives me a slight “age of Aquarius” feeling about the weekend. My stepdaughter graduates from college tomorrow so I’m looking forward to that event.
Nausea is minimal through last night and today. I was able to eat though I still don’t have much of an appetite.
I will spend a blog post talking about the things I’ve enjoyed while on the couch.
Day 114 of the overall journey, Radiation Day #8. Still not King of Freedonia.
A quick Google search will reveal that “Trogdor” isn’t mine. It is a character in a long-running, awesome cartoon series called Homestar Runner. I won’t go into detail on it, but you can look it up and wrap yourself in the warm glory of its wackidoodleness. You’re welcome.
Yesterday was my first day of inconvenient nausea. I had to spread out at home and relax. I took one of my anti-sick pills and worked out a story problem from the couch. I watched two of my favorite YouTube channels – RedEye Reviews and So Bad It’s Good. After about four hours of hydration and whining to myself about it, I was able to get up and go get ice cream with the family.
And then I went to sleep listening to a marathon of Johnny Dollar and Pat Novak radio shows.
It might be because I played for the varsity drinking team in college that I have a higher tolerance for nausea and hangover symptoms than most. Since I was told to stop drinking, it’s like the bad parts of it without the fun. At the same time, my overall health is much better. I don’t miss drinking except on days where I used to equate drinking with “I AM DONE WITH THIS BULLSHIT, TIME TO CHILL!” Since I won’t be done with this “bullshit” for several more months, I’m good with not adding to the list of variables. A friend of mine turned me on to sparkling water called LIQUID DEATH which is really good, expecially when ice cold. Somehow, it tricks my brain into thinking I’m drinking beer and, as I am already tired enough for sleep, night patterns of emptying a couple tallboys and drifting to dreamless sleep are uninterrupted and I am able to make my early morning appointments without feeling like I am crawling out of a freshly dug grave.
Speaking of appointments. When I’m in the waiting room, I try to say hello to everyone and hold a conversation where it seems natural. Those of you who know me are probably wondering who the hell I am and what the hell I did with the real Jay. But it passes the time and keeps things in perspective. Some people like to chat. It take their minds off the wait. The wait, and the treatment, are boring. The technicians are polite and keep things light, but the rest of the time is either introspection or watching the inoffensive DIY shows playing all over the center. The biggest conflict is if Diane and Chet have the money in their budget to fix the unexpected electrical issues that the hosts REALLY should have spotted in their initial inspection of the house but now means they’ll have to choose between Diane’s sewing room, Chet’s bowling alley, or the custom chef’s kitchen they both LIVE for…
Sorry. I just hated that Diane and Chet had to choose how to spend their $3 million remodeling budget. I hope they were able to keep Little Hemoine in prep school…
Sometimes, there’s no one to talk to. People can be wheeled in and just need to be with their caregiver until it’s time for treatment. Others bury themselves in their book or phone. And then it’s time for someone to meet the big machine.
Yesterday, I was up three pounds from my last weigh in. Must be the ice cream. My diet has changed because Reese’s peanut butter cups have lasted in my house for 2 weeks unopened. Some bagels don’t make it past the expiration date when, at one time, they wouldn’t make it through the weekend. I still have frosted animal crackers and other snacks I bought weeks back as comfort food. So I’m doing okay.
I have additional conditions to work on while dealing with all this. My blood pressure is under control with meds. My cholesterol is down for the same reason. My blood sugar is within reasonable levels. Still no cure for old person joints. AND I am not drinking anymore. Putting it all together makes this a complex journey so far.
Day 113 of the overall journey, Radiation Day #7. Still not King of Freedonia.
According to Dr. W, I am at the quarter-way point of my radiation therapy. This morning, the technician put Tom Petty on the radio, which is fitting since I’ve been listening to Tom Petty Radio on Sirius XM for the past month. I’ve been digging his work with the Heartbreakers, Mudcrutch, the Wilburys, and the Dirty Knobs. I’ve also been meditating on similar acts and those Petty throws out on his channel as blues and heartland rock acts.
His songs are quirky and catchy, sinister and innocent. I love songs with stories and narratives that connect with us as people. I have a selective taste for love songs or those lyrics that amp up the “pompatus of love” to Jim Steinman heights. I guess that’s why I tend to gravitate toward the 70s legacy of Laurel Canyon rock – The Eagles, Jackson Browne, Neil Young, James Taylor, Frank Zappa, Warren Zevon, Linda Rondstadt, the Mamas and Papas, Joni Mitchell. It’s why I still have a soft spot for Jimmy Buffett, especially when I’d have a few drinks in me.
His anthems for the common human, You Don’t Know How It Feels, Learning to Fly, I Won’t Back Down, Refugee, and Even the Losers are perfect rock songs to me. The ballads like Last Dance with Mary Jane and Into the Great Wide Open are among the great rock stories of the genre. He has so many great tracks by himself and with his bands that I’ll miss something you might love even more than his Top 40 hits. What do you listen to?
Of course, there are times when only Zeppelin or Metallica or 90s-era Queensryche are necessary to get through the hour. Just between you, me, and the Zuckerbugs, there are moments when the amygdala requires 100ccs of “Break Stuff” by Limp Bizkit to calm my man-tits. I guess that’s a lot like chemotherapy drugs. It blasts the whole body to destroy the bad seed growing inside.
I know, that was a stretch to bring the subject back to cancer, wasn’t it? I didn’t mean to. But like a lot of things in my life these days, everything comes back to the big battle for control of my ass.
Oh, if I REALLY wanted to drive the point home, I would describe the battle waged down there yesterday led by General Ducolax against the battlements of Fort Trogdor and the hours of raging assaults that left the battlefield crushed and bloodied. Is he being metaphorical? No one but Jay and his butt can say.
What songs get you through the rough times? What do you do to stay sane in an unsane world?
THEunJAYdedBOOK 