Cancer Selfies

Treatment on pause

This isn't even an anniversary I remembered, but on this day in 2022 my partner and I sat with the surgeon I'd been seeing for my abdominal pain and had all our worst fears confirmed by the results of test after test. And you know what? It's fine. I forgot. My partner and I went to the Toronto Zoo, not to mark time but because it's a fun way to spend a summer day.

Apparently the beaver at the zoo has passed away, and that hit me much harder emotionally than August 17 ever could. The beaver wasn't the fattest or roundest of the fatrounds, but they slept right against the glass window that opened into their lodge, so you could always get a good view. The beaver was probably my favourite exhibit.

I have no appointments in the next month. I've grown used to seeing someone every week or two. It's honestly become part of my identity. I'm not upset about it, obviously, but it's still weird. I've been busy, and my strength has been returning, which is also nice.

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.

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.

Toronto Zoo and chemo fatigue

Cycle 13, Day 6

Gang, I hadn't realized how bad my fatigue had gotten until yesterday. In the full summer heat I used to be able to see twice as many exhibits as I did yesterday. It wasn't cold, but I had a chill much of the day. The immediate chemotherapy side effects aren't too bad (but I think they're getting worse), but these slower acting side effects that build cycle after cycle are really draining. Fortunately, the seasons are changing and its getting easier to do things.

From the comments

James Petrosky: Bonus fact no one wanted to know! Pretty much the only hair I have left on my whole body is on top of my head or in my dramatically depleted eyebrows. This fact occupies a lot of my brain time but never comes up and this feels like the place to share.

James Petrosky: Yes this includes eyelashes. Strongly recommend not removing your eyelashes, I get so much more stuff in my eyes now

James Petrosky: Another bonus fact! I adore sea horses. They're one of my favourite animals (most of my favourites are what I like to call "fat rounds" - beavers, wombats, capybara, not long delicate fishies) and I was super happy to be reminded of this statue

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.