So I’ve been gone for a while. Three weeks, in fact, the longest I’ve gone without posting a column in the last decade and a half.
I had a good reason; I was in the hospital. It’s been scary and it’s probably going to get scarier.
Here’s what happened. In the interest of keeping it simple, I’m just going to reprint the updates as I posted them for friends and family over the last couple of weeks. It started with me going in for the second covid shot, and then I’d promised Julie I’d go over to Urgent Care to see about the difficulty I had been having swallowing, since we had finally managed to switch over our insurance. But then….
Feb 15: Well, I guess I am getting admitted since that’s the shortest distance to an endoscopy. At least I brought a book.
I should add that I feel fine and I am not in pain. I just have difficulty swallowing solid things. But I am not dying. And the insurance and Julie’s disability is squared away so we can address this without risking homelessness. Which is why I waited, so save the lectures. If we were Canadian we could have handled it a month ago. But we live here so we never can just “go to the doctor.” It has to be gamed out like a military campaign.
Feb 17: Okay. My internal clock is all screwed up and I am only allowed to sleep two hours at a time before someone else is in here doing a blood draw or taking my vitals or something. So I thought I would update everyone.
First of all I have no idea how long they are keeping me, and actual doctors are in short supply. The nurses are all very chipper and upbeat… and they’re black belts in deflection. So I have no sense of what comes next.
What happened was I went in for my second covid shot and then we went over to the clinic because of my difficulty swallowing. This set off all kinds of alarm bells and they admitted me because they wanted to do an endoscopy.
Well, that procedure was yesterday. They found a tumor in my esophagus roughly the size and shape of a banana slug; about eight centimeters long. It has ballooned up to the point that the esophageal passage is almost completely blocked. Eating solid food is out of the question. Even liquids are problematic because sometimes they go into my lungs and there’s much coughing and trauma. So I am on antibiotics in case of pneumonia. I’m about to be transferred to a unit that will put me in a room with negative pressure because they are terrified of me getting something airborne and screwing up my lungs even more, since they are already a little tender.
So that is where we are. They are going to have to do some kind of surgery but when, what kind, whether or not it is included in this hospital stay, etc., no one is telling me. The one thing that everyone seems to agree on is that I’m not getting out of here soon.
I wish I had better news and I really wish I could sleep. I am trying not to be bitter, but honest to God it’s hard not to feel persecuted. We got Julie’s cancer dealt with and her disability payments squared away and the insurance transferred…. and now this. I guess I should be grateful we got all that stuff handled but I keep thinking about how if we lived in Canada it would be a non-issue.
Anyway, apart from not being allowed to eat or drink and my mouth feeling as nasty as the floor of a movie theater, I’m hanging in there.
Feb 18: I really have only the vaguest sense of time. I guess it’s early evening Thursday? I’m in this limbo of napping between shots, blood draws, getting the IV fluids changed, and occasionally getting a pep talk from one of the six doctors working on my case.
Here’s the thing. The tumor is in one of the most inconvenient places it could be because no matter what plan of attack they decide on, I can’t eat. They do the resection now and the esophagus still has to heal, so they are trying to work out a plan B for how to feed me while they go after the tumor. GI specialist, cancer specialists, thoracic surgeon and his posse, and possibly a player to be named later are all trying to figure it out. They were each in and out of here several times already this morning.
Here’s where they landed. I think. Feeding tube for sure, probably going in Friday. There was talk of a stent to wedge open the esophagus enough for liquids but that has its own set of complications. The terror driving all of this is infection. Turns out the fever and chills from Saturday were from what is called aspiration pneumonia, meaning stuff meant for the stomach got into the lungs. That’s been knocked down, though I am still in isolation.
No further forward motion is going to happen until they do another couple of tests. I have truly come to hate the words “we are waiting on the biopsy results.” So far that seems to be the answer to almost every question about what happens next. The biopsy, in case you were wondering, happened on Monday. So the pathology guys are clearly completely overwhelmed and it’s a long line. I guess. No one seems to know… and honestly the CIA could learn a lot from the American nursing profession about how to block a questioner trying to get information out of them. The next item on the agenda, I am told, is a sort of video x-ray where I swallow vile contrast fluid and they watch on a monitor. That is scheduled for tomorrow morning. Friday morning, I guess. Then, probably Saturday but possibly Sunday, the feeding tube opening valve thing gets inserted which is a surgical procedure that involves knocking me out. There is also the equivalent to an endoscopy on deck but this is for the trachea. That will probably be Saturday or Sunday as well. The issue is the possibility that this tumor has also finagled its way in there.
The actual resection of the esophagus is not going to be happening anytime soon. They are going to be doing chemo and radiation first with the idea of shrinking the tumor to a more manageable size. That sounds like science fiction to me but these are the guys that went to school for this for twelve years so I’m going to defer to that.
So that’s where things stand. Julie and I are so moved and honored by all the things everyone has said and how wonderful everyone has been that I just don’t have the words. I wish I had the energy to reply individually to everyone but honestly I’m feeling pretty wrung out and I am cheating even doing this; using the voice software which I almost never do. But I know everyone is concerned and I wanted to let people know where things stand.
I have to add that my employers are being amazing. I bit the bullet and called the boss today and explained that this is not just a couple of weeks, this is long-term. Like, medical leave long-term. Seth was fine with it and told me that my job is waiting for me as soon as I get well. This is extra awesome because it means our insurance is not threatened. Which was something hugely terrifying for me. I have actually been more scared about the insurance and our income than I have about the actual goddamn cancer. And Ron and Rob at Airship 27 gave me a shout at the top of the new podcast which was hugely gratifying. It made us giggle a little because Ron had me in Oregon and he thought it was covid, but he referred to me as “a talented gentleman” which is going to keep me warm at night for quite a while.
I am too tired to really read, although I am kind of picking at the book I brought with me, but mostly what I’m doing is listening to old time radio on YouTube. Old school Dragnet is awesome. It is totally noir. If you only know Joe Friday from 60s Dragnet then you don’t know Joe Friday. There’s serial killers and running gun battles and all sorts of mayhem.
Also the New Adventures of Sherlock Holmes and Lux Presents Hollywood.
It’s almost as soothing as having someone read to me, and about the level I am at.
The projected arc of what they’re doing as of tonight is they finish the tests, get the feeding tube in and make sure that we know how to use it and safely manage feeding me, and then I go home and we start chemo and radiation on an outpatient basis. Seth said that at least I will get a lot of reading done. If he only knew. But it’s good to be employed by people who understand me.
So that’s the update. I am going to try once again and get some sleep, in the hope that maybe I can manage a couple of hours before they wake me up again. My understanding is that over in Afghanistan sleep interruption is one of the ways they break prisoners. But here at Swedish it’s just healthcare. I am getting minor revenge by snarking a little if they come in chipper and ask me how I’m doing. I have been saying well, I have fucking cancer so not so great….How are YOU doing? But it just makes the girls giggle. I guess they get their share of grumpy old guys up here.
Feb 19: Okay. I have successfully completed the swallowing x-ray test. I am going to be burping barium for the rest of the day. Good times. But in cheerier news, I did manage to successfully shower. First time in a week and it was almost a religious experience.
That is the extent of today’s official agenda. Stent/tube surgery is tomorrow. That includes the trachea probe. They are just going to knock me out and do it all at once. The surgical resident was in here this morning giving me a pep talk like before a big game. I know everybody means well but sometimes it feels a little ridiculous and I am having to work really hard at not snarking off at them. What I wanted to say was “You are giving me all this encouragement, but you understand I’m going to be unconscious for this, right?”
Sometimes I think I can cope with anything if I’m only allowed to bitch and be snide about it first. It’s the way of my people.
Feb 21: Day two after the surgery. The FIRST surgery that is… this is all essentially prep for attacking the tumor, but that’s going to be at least a month down the road. All of this is just about getting me fed and finding a workaround so they can safely cut the damn thing out.
Still no real sleep since getting admitted over a week ago.. This is far and away my biggest complaint–well, apart from, y’know, having cancer. They want me to sleep, they encourage me to sleep, but then they bounce in and out of here, very chipper, every two hours to take my vitals, to check my blood sugar, or to fiddle with my IV. It’s frustrating. I feel like I’m in this semiconscious twilight place.
But apart from that, things appear to be going well. I mean, I’m just the meat sack in the bed that everyone else is orbiting,so my perspective is perhaps not clinically sound. But I feel better. The stent, which has its own drawbacks, nevertheless has allowed me to swallow some water for the first time in a week without incident. No roiling around, no spitting back up, nothing. It is a measure of how small my world has gotten that this feels like Christmas morning. I would do a victory lap if anything worked. Nurse said maybe later.
I am supposed to walk later but for right now I am doing my first feed bag through the new tube. It is almost but not quite as bad as what they gave Peter Weller in Robocop. You may recall how appetizing that looked.
This is a little bit better; it looks like a bag of latte. However I am told that it’s full of nutrients and in particular lots of vitamin D. The downside, and this is hugely frustrating, is that I must, must, must ingest this sitting up. Now I’ve been told to try and sleep. This is about the same thing as trolling if they only knew. Julie can sleep sitting up. Julie can fall asleep at the drop of a hat. Julie is much better suited to this than I am. For me to sleep, I have to be lying down in a quiet place. And once I’m up I am up for a while; I can’t just roll over and drop off again. Now please don’t get me wrong, I certainly don’t wish this on her. But damn, I am really envying Julie’s sleep skills right now.
But on the whole I feel pretty lucky and everyone is being so sweet that I can’t even bring the full grumpy old man. Mostly I’m glad that they seem to have a handle on it. Of course that could be the sleep deprivation talking.
But anyway, that’s where we are post-surgery day two.
Feb 22: Despite a couple of gastric episodes over which we shall draw the veil of discretion, I am on track to go home tomorrow.
Where we learn all about feeding by infusion, chemo, and radiation. Julie is being really awesome like she always is. I guess it’s just my turn. I have this wistful dream of a day where we don’t have to worry about cancer at all, hers or mine… But today is not that day.
Feb 23: Finally home. Thinner and looking like a hobo but I’m here.
Enjoying my brief moment of freedom before getting hooked up to the home IV. At least we made it in time for the new Superman.
And that brings us to today. Say hello to our new constant companion. Something between a mechanical nanny and my new robot overlord.
Thankfully, since this picture was taken we figured out the portable backpack arrangement so I have considerably more freedom of movement.
We are adjusting. Being home is a huge morale boost; my hospital stay was the longest Julie and I had been apart since we were married and I missed her painfully. (Covid precautions in full force; no visitors, no exceptions.) I’m still not good for much but I am starting to get a handle on the new normal.
What’s been something of a shock is the change in perspective. I’m used to being on the other side of this. It’s always been me looking after other people. I’m trying to get my head around the idea that I need to let people look after me. There’s no John Wayne medal for being self-sufficient, though I’m learning to manage the IV without constantly having to ask Julie to help.
And I’m reclaiming the pieces of my life that I can. I intend to keep up with the column as best I can now that I’m back home, though I can’t promise to be here every week. But books continue to arrive for review and I am hoping to be able to catch up. Finally.
And I did another thousand words on the new Doc Fixit story. Speaking of, the first one, “Henching It With Dr. Fixit,” is now available as an audiobook from Radio Archives.
So, you know, baby steps. But steps, nevertheless.
See you next time with something cool. And lighter. But I did kind of feel like I owed readers an explanation, and now you have it.