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.

I'll never really get to use my licence

I was pretty pleased about passing my licencing exam last year. But we now know that I did it with excruciating cancer pain AND some pretty bad intestinal panic. Also I did extremely well.

Couldn't have been prouder of any other accomplishment to end my career on (even though it traditionally marks the beginning of a career)

The following was originally posted July 23, 2022

This week refuses to quit with the ups and downs

From the comments

James Petrosky: You can sad and care react if that's what feels right, but I'm genuinely pleased with what I accomplished, and am comfortable with it being an ending. I am at peace.

VLog: July 23, 2023

From now on, I'm displaying my PICC as well as I can.

VLog: July 22, 2023

Half in Elliot Lake, half in Balm Beach. Either way, I look exhausted and have intestinal distress.

I'm going home

Today I left Elliot Lake and returned home to Balm Beach, Ontario. Since we departed early in the morning on June 8th, I've only seen Thomasin for around half an hour. I adore Annie and Bessie, my Poodle Pals, and don't know how I'd have handled the last month without them, but I'm overjoyed and relieved to be with my cat again. And she's never been this affectionate. I know I'll eventually have to leave her again, but until that day we're together.

From the comments

James Petrosky: My incision still has a lot of healing to do, and I'm still restricted on how much I can lift, and the motions I can make. If I were planning on returning to work, I'd still be off for two months.

VLog: July 21, 2023

Last day in Elliot Lake, tomorrow I travel home (and get to see my cat)

Moving towards a normal

When I woke up from general anesthesia late in the day on June 9th, the equilibrium I'd grown comfortable with over the course of my treatment was shattered. End of life planning is a complex thing, there's a financial component, there's a kitty cat component, there's a what do I do with all my junk component, and obviously a fairly major medical component. And there's a surprisingly profound psychological component.

Obviously the biggest part of this is the sudden mandatory mortality salience. I think we do our best to ignore it much of the time, but there is no escaping the inevitably of it. And there's especially no escaping it when you hear or read the word palliative, in relation to yourself, several times a week. Or similar, more euphamistic phrases, such as "someone in your condition" or "with your diagnosis". The subject is inescapable.

(Most of the time I'm actually fine with this, and would like to talk more openly and directly about it. I have an appointment with my cancer centre social worker coming up, and this is the main thing I'll discuss)

Another mental thing I did was give up on a bunch of things. Not things I loved, I didn't stop playing with the poodles, or seeing the friends I'm able to see, I still play video games and watch trashy shark movies. I gave up reading the news, because at that point I thought I has 3-6 months, and 3-6 months is just too short to be concerned about anything that didn't affect my circle of friends (everyone reading this is included), I'd still read things people shared, but I quit checking the CBC and APTN daily. I paused all podcasts, and considered moving some of the more upsetting ones (news and atheism podcasts, mainly, the latter because they cover a lot of heinous behaviour directed at queer people).

This last few days, my mental state has improved. I'm not at my old equilibrium, I had a treatment and the possibility of ten years then, but I've spent the year gazing upon death's terrifying face, and am seeing that it's just misunderstood, and there is comfort in that. A comfort that makes me want to remain in contact with the world as much as I can. I'm reading the news again, and while the stories are horrible, I feel like a more responsible citizen when I stay informed. And I'd forgotten how important those atheist podcasts were to my feeling of being part of a larger community. Being a good citizen and being part of community are extremely important values to me, I'm glad to have them exercised again.

From the comments

James Petrosky: The moustache wants to stick straight out instead of connecting to the beard and I just might do it and go villian look

VLog: July 20, 2023

Gang, I'm dying, and all I've got is paliative chemotherapy.

VLog: July 19, 2023

The weather is nice in Elliot Lake, and I have decided that I'm not cutting my hair again.

VLog: July 18, 2023

There's not a lot to do in Elliot Lake when you're recovering from surgery.

VLog: Introduction

A short video catch-up on my situation, intended for people who haven't been following me the whole time.

About accents

Demonstrating a little bit of Northern Ontarian accent. Poorly.

(aboot vs about vs aboat)

The staples are gone

Surgical recovery remains frustratingly slow. My trip to the hospital on Thursday resulted in all the staples being removed (each hurt somewhere between a mosqueto and a needle, closer to the needle, except those in the open area which were extremely unpleasant). This changes the treatment plan for the incision, but surgical stuff continues to elude and confuse me, so I cannot say more. What I do know is that we've given up on the skin at that point joining back together again, instead new flesh will grow to protect the opening. I do not know how long this will take, but I suspect my body will be slow at it.

The chemo restart has been scheduled fast (although a date won't be set until August 3rd). I have another CT scan, so we can see how much the tumors have been able to rebound since I ceased chemotherapy three months ago. We're hoping for very little change, but I'll be honest, it's been a lot of bad news recently, so it's hard to he hopeful. There's also blood work, because there's always blood work. If you ever require chemotherapy, I hope you can get over your aversion to needles quick, it's a lot easier that way.

Until the CT scan I remain with my parents in Elliot Lake. I'm hoping I'll have recovered enough by then to be able to go back home, but this process is just so slow and, again, it's hard to be hopeful.

Oncologist update

I never write these ahead of time. I tried once or twice, but I could never get the tone right. I almost always plan in my head, but I end up finding something that feels better while writing, and I've been happy with the results. Today was different, I've been writing today's update since I woke up from surgery. Instinctively, I knew what I wanted to do. And I'm very happy with it, and someday you'll all get to read it.

But not today, because it was a piece that came from a doomed place. And I don't feel doomed, immenantly at least. Today I spoke to my medical oncologist, my prognosis has not changed in light of the failed surgery and newly discovered tumor. The surgical oncologists had given us a much shorter estimate, which is why I was so sure and have been so defeatist as of late.

Surgical oncologists see a lot of cancer, and surgically treat a lot of cancer, and read the notes and examine the imaging results for a lot of patients, but they don't do the day in, day out work of treating cancer. That is the job of the medical oncologist. And the surgeons told us as much, but you work with the best information you have available, and until 13h00 today, that estimate was as low as three months. I was 35 when I was diagnosed, in an instant half my life evaporated. One year is a tiny fraction of that, but it's so much more than mere months.

With cancer, things always move fast. I'll have a CT scan in the next few weeks, to see how much the tumors have regrow over the past three months. I'll have to have blood work done. And then I see my oncologist on August 3rd. It's possible for chemo to start the following week.

The way I did chemo last time was not the typical way that particular cocktail is done, because we were aiming to get to the HIPEC surgery. The surgery may have failed, but our treatment plan was a success. But I now have no surgical options, just chemotherapy, and we'll likely be following the more typical treatment plan of three months of chemo (six cycles), three months rest. This will continue until FOLFIRI+Avastin is no longer effective against my cancer. We haven't discussed what happens then.

Prognoses are probabilistic in nature. And probability is a thing many of us have difficulty with. If I only make it to ten months, or if I make it to two years, it doesn't mean the prognosis was wrong. My cancer is extremely rare (literally one in a million), so everything, from treatment plan to prognosis, is based off of colon cancer information. Not only is my cancer rare, I am decades younger than the average person at diagnosis, and my cancer is more developed than the average case at diagnosis. 1-1.5 years is the best estimate I've got, and I'm running with it and planning around it, but it isn't a guarantee.

From the comments

James Petrosky: I didn't really make something as clear as I wanted to. I've been very stressed about not being on chemo the last month. But I was off chemo for two months before the surgery, and now one after, which is the length of the three month break from chemo that's typically part of the treatment plan. So I haven't actually missed any yet, I've lost no ground to the cancer that isn't part of the plan, and therefore part of the prognosis. So not only is this (qualified) good news, it's good news and I can stop worrying for a while.

Oncologist anxiety

My new emotion for is anxiety coupled tightly to existential dread.

Send cute stuff plz ¹

A trip to Espanola

There is no desernable improvement in my incision healing over the past few days, but I've learned that's the wrong time scale to measure it. Since it isn't infected, or seperating to an alarming rate (we have a home care nurse three times a week, monitoring it), it's best for me to really look at it once a week. You can see the improvement on that timescale.

Much more importantly and excitingly, the reintroduction of previously forbidden foods continues. Tomatoes and pickles are still out, but I enjoyed a bacon cheeseburger with the works, less those toppings, today. It was magnificent. Relish was the major addition, but onion was also forbidden until recently. Photos are from the lunch spot in Spanish, Ontario, at my favourite chip truck north of the French River (aka in Northern Ontario).

Today my mother and I visited one of my cousins (with his parents), which means that today officially kicks off me working through my activity list. He's got some ducks and chickens, two delightful dogs and four wonderful cats. Genuinely, the sort of life I'd have loved to have. I've got no pictures, and forgot all the names but one, because there was a mighty orange cat named Doug, and I spent most of my animal time with him. We'd all be lucky to have a cat as aggressively friendly as Doug.

Given my limitations and situation, which is going to be a caviet implicit in anything I say from here on out, today couldn't have gone better, or been more enjoyable. I saw people I wanted to see, ate one of my favourite sorts of food, pushed myself as hard as I have since the surgery, and pet lots of cats.

The appointment with my oncologist, like the sword of Damocles, hangs over all this. I'm starting to build anxiety about it. I tell myself that anything I learn doesn't suddenly become true by me learning it, and that whatever my fate is has been true since the evening of June 9th, after we all learned the surgery had been cancled, and realistically, also true on the second of August, last year, and perhaps further back, depending on how you feel about free will and cosmic determinism. August second is as far as I dare go.

I look forward to becoming more forward facing, hopefully the appointment will help for that.

From the comments

James Petrosky: If any of you ever find yourself traveling the north shore of Georgian Bay, in a little town called Spanish, right on King's Highway 17, is a chip truck called Lucky's. Extremely strong recommend from me.

They use chicken gravy for their poutine, which is unconventional and not to everyone's taste, but it's the best chicken gravy option I know.

Nancy: Doug

What to get for a person with cancer

Hank Green is also dealing with cancer, and exactly as you'd expect, has been vlogging his experiences. I love this video, I learned a lot from it. If you know someone with cancer, consider taking ten minutes out of your day to watch it. It's fantastic.

From the comments

James Petrosky: I got a lot of soup in tupperwear at the start. It was very kind. But I don't like soup, and couldn't eat some of it because it had apple sauce in it and I had a bad chemo-applesauce adventure. And the added dishes were not much, but more than I wanted to deal with.

Early on, after I'd had a month to process but was just starting to tell people, there were a few coworkers (no one who can read this, won't ask, I won't tell) who it felt like I had to do the work of emotionally comforting over my diagnosis with a ter… See more

Being told "ask if you need anything", unless you're my family or partner, is just asking me to become a manager for my own care. I already use all my management capacity between the four doctors I regularly see, home care visits, pharmacy trips, blood… See more

It's a shame it took a full course of treatment to get to this point. In a better world, I'd be done treatment right now, maybe to need it again in a year or so. But that's the way of things.

All this being said, if you've done anything for me - even as simple as animal photos when I've asked, thank you. I couldn't have made it here, with my mental health largely intact, without you

Jealous of Hank Green, but not for the reason you'd think

Is it weird that I'm kind of jealous that Hank Green gets to try radiation treatment for his cancer and I won't get to? (yes I got to do surgery and he probably won't but shhhh)

(I'm mostly joking but it's an experience I won't have (and probably don't want) and could have had if mine was caught at an earlier stage)

(this video isn't essential viewing, just a jumping off point for a weird emotion I had)

From the comments

James Petrosky: He also did so many fewer cycles than me, but his chemo sounds a lot harsher. It's curative, though, so patient comfort is less of a concern than with a palliative treatment like mine. It took ten cycles for me to have similar side effects to what he had after two.

Pain killers and anti-clotting needles

Pain. Pain is something I deal with a lot right now, with luck I'll have some pain free time after the surgical wound haa healed and before the cancer pain returns, but I know better than to hope for luck after the last year.

Just before I take my medicine (hydromorphone, 1mg), I know I'm feeling pain, but it barely registers as hurt. It's not a soreness, a burning, or a stabbing (cancer was stabbing for me), it's difficult to describe. But it is so intense that it blocks hunger and fullness completely, the need to use the washroom, thirst, even itchiness.

I the first ten minutes after taking pain killers, the numbing effect disappears. I begin to be able to tell what my colon and bladder are up to, but the main feeling in this stage is pain, in the traditional sense. When I was in the hospital, in the days following the removal of my epidural and pain pump, I didn't realize that the indescribable feeling was pain until the pain doctor (his words) told me so. The first time I recieved a hydromorphone dose, rather than continuously, the traditional pain at this point was unbearable. I nearly called for a nurse and doctor, I thought the cancer has done something terrible. My abdomin felt like a tangled mess, and each strand burned and stabbed independently. One by one they untangled, and with order came relief from the pain. By the end of twenty minutes, these new pains, the ones hidden by the numbness, are mostly gone.

Finally, I'm left with the pain that is most directly associated with the incision itself. This is mostly a soreness in the direct vacinity of the opening. By now, I can feel all body signals that are originally blocked. If the staples (I think there are 46 of them) have any discomfort to them, it's blocked by the numbness and the pain killers. By now I'm also as high as I'm going to get, which isn't a lot, but enough that I won't drive (I feel comfortable driving on T3s, but won't operate the forklifts, scissor lifts and booms at work) and I may have a nap. I take my one dose a half hour before bed to time it for this. After my experience in the hospital, it's not a high I find particularly enjoyable.

If you ever receive major surgery, they'll give you a shot to prevent blood clots. I've never liked needles, but lithium requires monthly serum level monitoring, so I've gotten over it. Which works great in the hospital. But I needed to take it for four weeks. I had to eject myself once a night for eighteen nights and I genuinely didn't know I had it in me. I may have had no choice, but I was still able to face and defeat one of my oldest fears. I don't feel a lot of accomplishment in this, but I do know I've promised myself a bacon cheeseburger at my favourite chip truck on Highway 17.

From the comments

James Petrosky: It's weird, I actually experience more pain on the hydromorphone than without it, because without it I don't feel much of anything, but with it I feel regular stuff. But the pain I experience is regular stuff, the creaking knees, the strain of stretching too far, Bessie stepping on your feet (she really likes doing this for some reason). Normal things. Human things. I don't want them to go numb for as long as I can hold off.