Cancer Selfies

VLog: July 24, 2023

I visited Mt. Sinai for a surgical followup (things are going great)

Return to Mt. Sinai

Today I made the journey to Toronto, to return to Mt. Sinai for what I hoped to be the final time, I had a followup appointment with the surgeon who preformed my aborted HIPEC surgery.

The surgeons were very happy with how my incision was healing. My home care nurse in Elliot Lake had been updating my surgeon, so it wasn't too surprising, but it's still great news. The area that seperated, that is still healing, is where my belly button was. My belly button was removed during the surgery (the only cancer that was removed), so there was some lost skin here. I hadn't made the connection, hadn't realized that I was missing skin, and this allows me to cease worrying that I could have done more for healing. I also hadn't figured that the belly button was the source of my pain all last year, so when pain returns, it can't be the same source.

I no longer have any physical activity limits. I can work my way up to any sorts of exercises I'd want to do (weight lifting would still be out, but I've never had interest). I was told that what I really want to do, gradually increasing my walking endurance, is exactly the sort of thing I should be doing. Which is fantastic, I'd love to recover some strength and a lot of endurance before I restart chemo, which is going to hurt both of those things. I should have a chemo rest period before the cold weather sets in, so I can recover more, but I remember how cold I was all winter, that will be a season of atrophy (I have Ring Fit Adventure for Switch, which I hope will help mitigate the winter losses).

This week I have to get a CT scan, and ensure its summertime hot flash, and visit the cancer centre at the Royal Victoria Regional Health Centre in Barrie, and then next Thursday I meet with my medical oncologist in person to discus the results and come up with our Summer/Fall treatment plan. My surgeon thinks that if we can afford to delay (the CT scan shows minimal change from the CT scan I had back in March at the end of my second round of chemo), we should allow the incision another few weeks to heal, but that it's healed enough that we could start chemo sooner. That's ultimately a question that only the medical oncologist can answer, and while I have some say in the matter, I fully intend to defer to her.

From the comments

James Petrosky: As is traditional when non-Torontonians from rural Ontario visit Toronto, we got food that's hard to get in Midland (dim sum, in this case) and took a stroll in a walkable neighbourhood with fun stores (Chinatown, it's almost always Chinatown, especially because it's minutes from the hospital). We stopped at a Chinese bakery, many bbq pork buns were enjoyed (also a good selection of other tasty treats, but the pork is my favourite)

I really wanted to visit the Art Gallary of Ontario, Couch Monster is just outside the AGO), but the 600m walk from the hospital to the AGO took a lot out of me. But there will be future trips, hopefully planned far enough in advance that I can invite others.

Discharge day!

Discharged!

From the comments

James Petrosky: You can really see where my beard was shaved for the operation

Hospitalization is coming to an end

Ten days hospitalized. I'm back on solid foods as of this morning (although the order came down too late to save me from anything but jello for breakfast again) and I'm on track to be discharged tomorrow.

It's weird, but being here has been kind of like a vacation. Very slightly so. It didn't save me from thinking about my own health obsessively for two weeks, as I have for the most of the entire year before, but I was thinking about normal things, like healthy organ function, my nose and throat, and getting my bowels to work right. Yes, cancer is the reason I'm here, and yes, I'd much rather be fretting over the alternative reality where we played golf rules organ counting games and I always won, but I haven't thought much about that. But instead I've come up with increasingly elaborate and stupid ways of counting laps of the floor (always do them in sets of two, proper breaks after five sets, at least two proper breaks between meals, etc.), done some top tier people watching and enjoyed the view over University Avenue.

Being a cancer patient is a full time job, and this is the weirdest sort of break I can imagine from it while still being actively treated.

I have a copy of the surgical report. Tomorrow, I'll have an opportunity to speak to one of the surgeons who was in the room to clarify any details and ask any questions I might have. One of the big ones is what surgical options, if any, exist for me. I'll coach you all the exact way I've coached my family on the subject: there are likely none. Chemotherapy still exists, though, and I'm in high spirits. I'm excited to overshare about this report, but I need to speak to my surgeon, oncologist, and family before I do.

The next step is to temporarily move in with my parents, because I can't drive or carry groceries for the next month, until I've recovered enough from surgery to move back home. Hopefully, we start that 550km trip tomorrow.

A lot of updates, but not about cancer

Thursday

One week hospitalized. I have no further information on the cancer for now.

I've learned that, pretty much what you'd expect for a bipolar person, if you give me as much morphine as I want, I will want way too much. I haven't been in pain since I woke up, but I was really not in pain for those first days. I don't even know when the epidural delivering it came out, even though I'd largely stopped using the on demand function by that point. I had a couple restful nights under it, and a couple with wild and crazy visions of the sort I cannot possibly explain (there are several hospitals right here and to heal and be discharged you must defeat all of their celestial forms? In an extremely literal kind of way)

I had a nasal-gastric tube in my nose all week. I know I said some pretty harsh things about them under opiates, and they are bad, but not nearly that bad. There's a 30cm long suture in my abdomen, and that is objectively way worse. The tube drains your stomach before your bowels have reengaged, so you aren't throwing up all the time. Which is another thing opiates make worse, but at least you barely remember.

For now, my recovery looks like most other major surgery recoveries. Because even though I did not get the procedure I wanted, I still got a procedure. That means a lot of nurses monitoring my bowel movements, and a lot of little walks around the floor to encourage the bowels along.

While I'm here I can have visitors, but since I barely have an idea where I am within Mt Sinai, I'll have to ask in the morning. But check in with the rules for visitors, and let me know your coming

From the comments

James Petrosky: I didn't want to post with the tube in, I thought it too gross, and if it has to go back in I'm canceling the invitation until it's gone again. This is apparently my limit of sharing.

Fucking morphine, I can't say never again but I hope never again

The seige could not be broken

They found an inoperable tumor when they opened me up and were forced to cancel the surgery. I have not had the opportunity to speak with the surgeon yet, so I don't have the details. I'm recovering well, all things considered.

Also I no longer have a belly button (good riddance)

From the comments

James Petrosky: This probably worsens the prognosis, but I need to speak to the surgeon and my oncologist to know where I stand.

To the walls

I reflected on this on June 9, 2024

Months ago I expressed my distaste for the cancer as a battle or fight metaphor. It might represent some people well, especially those with stage 1 illness, but it doesn't reflect my experience. For me, cancer has been a seige. And today, friends, the relief forces have arrived, and we're going to do our damndest to break that seige. We done everything we can to ensure success, and now it's all in the hands of the fates.

Tomorrow is surgery day

In twelve hours, I'll be in a hospital gown, enduring what I expect to be the longest two hours of my life. I didn't really sleep last night, nor the past few, and don't expect to tonight. I've been overwhelmed by questions and forms and information (guess who didn't think to have his insurance information ready). The weight of it all overwhelms.

I've known this was the path I wanted to take for many months. I've thought about the outcomes, likely and unlikely. About the costs and complications. I know I've done my due diligence, but still this feels like a decision I'm unable and unready to make. I don't think any amount of information and time would change this. But I know I've taken the time, and I know that whatever part of me is voicing these doubts is completely ignoring the horrors that abandoning treatment would mean. I'm ready to make this choice, and have been for a while. I don't have to like being forced by the cancer into this position, but I do want to try and make the best of a terrible situation.

I may not write again for many days. You're all important to me, and I hope to have someone update you all, but please be patient, my family rightfully respects my privacy much more than I do. The procedure often can run as long as ten hours, it's going to be a very long day for everyone but me.

Laproscopy day

I'm in Toronto, at Mt. Sinai, waiting to be called in for whatever preop activities are required before my laparoscopy at 11:30. I'm exhausted and haven't slept right in a day's and haven't eaten since Monday. But I'm excited.

End of course one CT scan

Cycle 6, Day 6

Today I visited the Midland hospital for a CT scan. Next week I should hear back about the results. This is how we're going to learn how well the treatment has been working.

I'm excited, and cautiously optimistic, for the results. I need to remind myself that I'm on a palliative chemotherapy cocktail. That the goal is quality of life, not to rid me of the cancer. The best case scenario, the scenario I hope for, is that existing tumors have shrunk and that no further spreading has occurred. None of that is guaranteed, but I feel good, physically and mentally, and I'm allowing myself the risk of disappointment on this.

I have an appointment with the surgical oncologists at Mt. Sinai in early January, they are much more experienced at interpreting this sort of scan than the medical oncology team in Barrie is, so even though I'll learn a lot next week, I'll still have to wait another month before I'll learn a fuller story.

First visit to Mt. Sinai

Cycle 2 Day 8

You know those days that feel like overwhelming victories because they went fine rather than catastrophic? I'd file today with those days.

The news is generally good. Mt. Sinai has similar procedures as Royal Victoria does. My case will be presented to the surgical oncology team, who will decide if and when surgery may take place. Typically there are two rounds of chemo (each of six two week blocks, for six months total) before you become a candidate for the surgery.

Tomorrow I visit Mt. Sinai

Cycle 2, Day 7

Tomorrow I meet the second oncology team. I cannot possibly express how anxious I am. If I am accepted for surgery (which i won't find out tomorrow) and if it goes exceedingly well, I could be free and have an almost normal life. But that's a lot of ifs. And I'm terrified that I'm not going to be a good candidate. And everything that entails. But I'm trying to stay hopeful, and if absolutely nothing else I'll know a lot more tomorrow by this time.

(What I don't need or want is any false assurances right now. I don't need to be told to stay positive, my moods are stable and toxic positivity is as dangerous as negativity. The best way to show support for me over the next day is with photos of adorable or delightful things and creatures. Please respect my wishes in this, but also please don't come down on anyone who doesn't see all this right away or interprets it differently. I'm an adult and I'll engage as I feel the need to. I love you all)

From the comments

James Petrosky: I edited the one photo I said I wasn't going to and now I really like it so I'll just shove it here

Phone Anxiety

Fun fact! Phone anxiety only gets worse when it's literally a matter of life and death

From the comments

James Petrosky: Okay I whine but I think it's all done. Turns out the trick is to short circuit my worry circuits with the care circuits by putting "order flee medication for Thomasin" last because I will always put off stuff for me but cats are much too important
James Petrosky: To anyone worrying, it's important but not iminant. I need to get some CT scan results to someone at another hospital, but apparently the best/only way to so that is a USB drive.

James Petrosky: It's not like I'm not calling an ambulance because I'm too nervous, is what I mean.
Stefanie: James Petrosky really in this day and age they can’t send the files over in a better more accessible way? That’s really unfortunate
James Petrosky: Stefanie patient confidentiality is the killer, I think
Stefanie: James Petrosky it makes sense but it’s unfortunate given you probably can’t like mail it
James Petrosky: Stefanie I think it's a USB drive, so I might be able to mail it. Once I have it I'm calling and asking how they want it sent
James Petrosky: It's a CD/DVD. What is this, 2005?
I can't even look at the files 😆
Stefanie: James Petrosky damn that’s really old school (says the nurse who was still sending out patients with CDs last year 😆) yeah you probably can’t because of software needs and they put some super security measures on them for confidentiality
James Petrosky: Stefanie no I can't because I haven't owned a CD drive in almost a decade

Two oncology teams

I reflected on this on August 30, 2023

Good news! I have appointments with two different oncologists!

Bad news! I have appointments with two different oncologists.

From the comments

Ron: Because two different cancers or...
I wanted to say it's good to talk to different professionals about something this important but then it occurred to me.

James Petrosky: Ron two different treatment styles, I think. My understanding, the first is a traditional surgery and chemo option, the second is a more aggressive hybrid approach. The first is at a regional hospital and the second is one of the major hospitals in Toronto
Ron: James Petrosky Given the unfortunate delay in your diagnosis I suppose aggressive might be called for, but honestly cancer scares me enough that I definitely just reflexively equate aggressive with good when it comes to dealing with it. I'd nuke it from orbit if I could
James Petrosky: Ron Bedison I'm fortunate that otherwise my health is still fairly good, so going off absolutely no information I'd also opt for the more aggressive treatment. But more than anything else I'm so in the dark and I just want information.