Health Update: Physical Therapy and Port Surgery
For background: I had a pulmonary embolism in February 2023, as told in these articles: Part One, Part Two
The bleeding I’d had before that meant I’d already scheduled a colonoscopy to look at it (which was going to happen in May), but my colonoscopy got moved up, as told here.
The bleeding I had already scheduled a colonoscopy to look at (which was going to happen in May) got my colonoscopy moved up, and it happened last week as told here.
That resulted in a cancer diagnosis , and I saw a colorectal surgeon as told here. Then a cardiologist, as told here. Then I was nearly tortured by an MRI, as told here.
Then I had to offer a blood sacrifice to a CAT scan, got a massive kidney infection, and was rediagnosed as having late Stage 1, rather than Early Stage 2 cancer, as told here. That led to my case being presented to the shadowy and mysterious Tumor Board, and the decision to start me on three months of Chemotherapy, as told here.
All caught up? Okay then.
So, the decision to engage in Benevolently Poisoning me almost immediately had implications. First, I was assigned to physical therapy, both to increase my stamina to help reduce the impact of chemo, and to train me to move my larger-than-life body around if the chemo makes me weak. I’ve done four sessions in the past week, and it’s exhausting. It’s especially exhausting since I got surgery for my port in the middle of that, and am anemic and on blood thinners.
None of that means it’s not a good idea. It’s just an exhausting good idea. Those happen. Like, I dunno if I could climb 50 feet of cargo netting. But if I was drowning in a sea covered with burning oil and a ship threw a cargo net over the side and told me to climb the 50 feet up to the railing so I could survive? You can bet my exhausted ass would be climbing, because that would be a good idea.
Well, metaphorically, there’s a section of oil-covered burning seas in my colon trying to kill me. (And no, this is not a joke about spicy food. Or, at least it wasn’t until just now. I guess it is now, which belabors the point more than just a little, but I mean you’re reading a blog about someone’s cancer and if I don’t do these silly little asides now and then it’s going to be too grim for me to want to write it, much less ask anyone to read it. Or, for that matter, be so inspired by it as to pay me for it — see “Support,” down below to see what I mean.)
So, the point with the cargo net story was supposed to be that I am fighting for my life. So I don’t have to like physical therapy, I’m doing it as told, when told.
In the middle of this run of physical therapy, I had to get my chemo port installed. This is a little silicon injection site, inserted just under my skin (it makes the surface skin swell by about the same size of the last joint of my pinky) with a tube connecting it to a vein that feeds directly into my heart. Because if I’m going to have to make a Save Vs Poison to beat my body’s cancer cells, I’m making sure the poison tracks down every last one of the little fuckers, wherever they hide.
We happened to have the same anesthesiologist for my port as my wife had for her hysterectomy last month. He walked into the ready room, looked at me in the surgical gown, looked at my wife in the visitor chair, and said “Y’all switched seats! So, second verse, same as the first.”
I like him.
And he took my pain, breathing, and anxiety very seriously. Due to my breathing issues and anemia, he decided to put me all the way under (he normally does twilight for port surgery), and be in charge of my breathing. Which is scary, but he talked me through every step, made sure we have the exact mask he wanted, my head at exactly the angle he wanted, and so on.
Once I was in the OR, he told me medicine was flowing, and I should feel tingling and burning. I didn’t, so he stopped absolutely everything, and checked every connection. It was all fine, I just had no reaction to the first medication. Then he began the second, and I grunted “Oh, THERE is the tingling and burning!”
I also want to say that I was wearing an overglorified napkin at this point, and it’s neither dignified nor warm. to help with both, I was laired in nice, warm, heated blankets. But my hands and feet get cold fast, and one of the nurses took it upon herself to lean over and hug me, rubbing my arms and flank until I warmed up. And… it was nice. Comforting.
Then, the anesthesiologist told me we were beginning the third medicine, and someone put an ice chip into my mouth and asked me how I was doing.
Now, yes, objectively I am aware things must have happened between third medicine and ice chip. (Even Star Trek transporters aren’t THAT fast.) In fact, when I took that ice chip, I was aware that it was not the first ice chip I’d been given, and that I was in the Recovery Room, but I had absolutely no memory of anything after “third medicine” was said.
I think that’s what the Gap, in Starfinder, must have felt like.
And, I don’t remember anything ELSE in Recovery either, though I was in there for an hour. My next memory is being back in my prep room, with my wife and a nurse, aware that I hurt a little. I didn’t CARE about the pain, but I knew I hurt, Except for my throat. It felt like I had the worst case of strep ever. Which I’d been warned to expect, as a result of the breathing tube. But it still sucked.
Then, the nurse offered me a selection of drinks. I have no memory of anything but hearing “hot chocolate,” and knowing that was what my throat needed.
So, here’s a piece of advice: If you’re coming off full sedation and painkillers, still so groggy from surgery you feel the room swaying back and forth, and the nurse offers you a drink for your throat, do not select hot chocolate.
Because you’ll have no hint if you’re burning your mouth as you drink it, until hours later when painkillers begin to wear off.
My wife assures me I sounded and looked quite clear-headed. So when the nurse warned me the hot chocolate was very hot, and I just happily sipped away through a tiny stir straw, my wife figured I knew what I was doing.
Things are a blur again for a while after that. I was magically dressed (again, my wife Lj assures me there was no magic involved, just hard work on her part), and teleported to the comfy chair at home. Then food materialized, and disappeared, and then my wife and housemate faded away and I was left snoozing in the comfy chair, in the quiet.
Or, that’s how I remember it.
It took me two full days to really recover, and even now a third day later my incisions hurt like heck, I suspect due to the blood-thinner-induced bruising (as I had to go back on blood thinners the day after surgery).
But I’m okay. Which is good, because tomorrow my chemo begins.
Save vs poison!!
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So, it’s a day later, and it hasn’t been a great day.
I went to go begin my chemotherapy today. I had port surgery last week so I could have infusions.
But chemo did not start, and I can’t get infusions.
See, my normal care goes through the Norman Regional Health System, who take my insurance. But they won’t treat my cancer. I’ve seen them, and my case is too complicated for their facilities and the staff they can put on it.
So, instead, my cancer is being treated by the OU Health Stephenson Cancer Center. They have the tumor board, cancer teams, and facilities I need.
It was Stephenson who decided I needed to begin with 3 months of infusion chemo, then referred me to Normal Regional for the port surgery, which happened last week.
But when I went to go get my chemo infusion today, my oncologist saw me instead, and told me Stephenson doesn’t take my insurance, so I can’t get an infusion through them. (Also, I may be racking up thousands of dollars in bills with her, since her health system doesn’t take my insurance. She doesn’t know.)
And Norman Regional only has a tiny infusion team, and my oncologist can’t get them to schedule me for weeks.
We can, of course, argue with both the insurance company and Stephenson to make a deal for my case. That will also take weeks.
I have cancer right now. I can’t wait weeks.
So, despite having undergone general anesthesia to get a port, I can’t use it.
Instead, we will be going with an oral chemo treatment — which is not my oncologist’s preferred treatment, but at least we can start… soon. Or, at least, soonish.
We don’t know how soon. My oncologist called it in to the two specialist pharmacies that handle it locally… one of which is the Stephenson Pharmacy. Which may not take my insurance, which may leave me out of pocket for a few grand to pay full price for my own poison.
But we’ll see how fast they can get that in, and what they’ll charge me.
AFTER chemo, Stephenson expects that most likely I’ll need two surgeries, likely months apart.
Surgeries that, right now, Norman Regional *won’t* perform, and Stephenson will not accept insurance for, leaving me tens or hundreds of thousands of dollars out of pocket.
But that’s a tomorrow problem. Today, I just need to change all my prep from 3 days of infusion every 2 weeks, to oral poison twice a day every day nonstop. And different side effects, like possibly the skin peeling off my hands and feet.
I am not happy right now.