Cancer Selfies

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.

Pain overwrites everything

While the level of pain I'm in does hurt like a mother fucker, the pain's ability to block out other signals (mainly hunger, thirst, and need to use the washroom) where its true villianous nature is revealed

Recovering from major surgery

Surgical recovery is such a painfully slow process. Recovery from major surgery even more so. And although you might think and hope I'd get some kind of discount on time required because nothing was actually done internally, that is sadly not the case. Major surgery is major surgery.

Since I've been eating solid foods, I've been on a special low fiber diet. It's extremely similar to the one suggested in oh so many cancer pamphlets. All raw vegetables are forbidden (I prefer most vegies raw), anything with tough skins (apples, peaches and many other fruit, tomatoes, peppers, cucumbers) is forbidden, anything with seeds or nuts (crunchy peanut butter, tomatoes, cucumbers, sesame seeds, poppy seeds, etc.) are forbidden, anything that can cause gas (the whole cabbage family, carbonated drinks, many others) are forbidden. I've eaten a lot of mashed potatoes (pealed, obviously) and very well boiled carrots and green beans. All meats are okay, so long as their easy to digest, and while I'm off chemotherapy my restrictions on runny eggs and rare beef have been lifted (sushi is technically okay, but so many have seeds and raw vegitables that it's still essentially forbidden, also I'm in Elliot Lake, Ontario, so it's a moot point).

We're starting to reintroduce other foods. Yesterday I had chip truck poutine, with skin still on the potatoes (my preference). I'm finishing up a box of Cheerios (2g of fiber per serving, which was allowed) and will move on to Shreddies (6g, previously forbidden). I'm also going to start eating peppers again.

Internally, the recovery is going wonderfully, considering that colon cancer is the whole reason for this mess.

The physical incision is where my real challenges lie. The top ~10cm have healed well, and the staples could probably be removed. I don't get to see the bottom ~10cm quite so clearly, I'm fat and my belly is in the way (~5 of those centimeters are also below the belt, so my angle is bad) are similarly healed, but the staples and the closed incision are more painful to me because of how pants sit on your waist. These sections have both looked pretty good since I was discharged two weeks ago.

The middle section is not so good. This area is where my belly is widest, and where all the muscles for twisting and supporting yourself are. The incision has pulled apart a bit somewhere in the past couple weeks (possibly even in hospital, but more likely after discharge), although it doesn't seem to be getting worse right now. The staples are in place, so there's no danger, but it does complicate healing.

Part of the reason this is taking so long is that some chemotherapies can slow your body's wound healing capability. One of the drugs I was on (and discontinued in March) is also a powerful blood thinner, for example, and I really noticed how much more I bled after Thomasin scratched me even weeks after I was off it (which is why we discontinued it so much earlier than the other drugs, it has to be out of your system to get surgery). And who knows what the cancer itself has done to these functions.

My new terror revolves around chemotherapy and wound healing. Because it can harm your ability to heal, you're generally not put on chemotherapy while you have a major wound like this open. And once I start, further healing will be dramatically slowed. So I can't even start chemo until I've healed, but every day without chemo, statistically, shortens my expected life. And, regardless of all that, I'm likely to be in a physically weakened state for months. Right now I don't have an updated prognosis (July 12th, hopefully, but with dread), don't know when I can start chemo again and don't know if I'll be physically able to do any of the things I was hoping to do.

The situation is frustrating, I'm exhausted, often in considerable pain, and I can feel my mental health tumbling. I have excellent support, my parents are wonderful, the poodles are goofy, and my home care nurse is everything you could ask for. But it's just not going to be enough if this goes on long enough.

From the comments

James Petrosky: Anyways here's a Bessie, the creature most devoted to my mental health right now

James Petrosky: I don't know how to talk about surgery this way. I've gotten good at talking about cancer - I've spent months voraciously reading about everything I can think of. Surgery is something entirely different, I know about the operation that was aborted, can explain what it meant to me as a cancer patient, but I just have no context for surgery in general. And, now that my time on the operating table has passed, I just don't have the motivation.

James Petrosky: Also, all these photos were taken within five minutes of each other. Elliot Lake is quite nice with the greenery, I'm not allowed to take the kind of walk required for this photo spread back in Midland.

PICC emergency

Its taken ten whole months, but I finally have a PICC emergency. I don't think it's going to require a visit to the ER, but it might. My PICC runs from my left upper arm, through a vein, to a point just outside my heart. Keeping the site where the line enters the skin sterile and clean is very important, as an infection has a direct path to the heart.

Today, in the heat, half my dressing peeled off my skin, exposing the opening in my skin to the air. In the grand scheme of emergencies, this ranks, but low. There are many other seemingly minor things that are emergencies for me - a fever or constipation for more than a couple days are what spring to mind, but this is the first I've had to deal with.

While writing this, the nurse has come and gone and the crisis has been averted. I've been instructed to stay out of the heat and sun, to try and keep the new covering in place longer. Our heatwave is supposed to end tonight, so hopefully this isn't going to be too restricting.

Death and dying

This one's a bit different. It isn't about surgical recovery (it's going very slow), nor about cancer treatment (I'm waiting for the 12th for my oncologist appointment), but it is about death and dying, something I imagine every cancer patient spends a lot of time thinking about, specifically it's about religious/philosophical beliefs surrounding death. So if that isn't something you can deal with right now, maybe go find some geese to watch or whatever else makes you happy. Also, please read the whole thing before commenting, I specifically do not want certain kinds of discussion.

Also, if you're reading this, you are not the one who did this¹, nor are you likely to know the people who have. You've all been very respectful, and I really appriciate that.

I'm an essentially lifelong atheist. I'm secure in my beliefs and feel like I've given a fair shot to many of the competing systems out there. I think that most people reading this, atheist or one of the various sorts of theist, probably have as well. And, up until my cancer diagnosis, I've enjoyed discussions with reasonable theists (basically, if your denomination doesn't think I deserve eternal hell fire for being bisexual).

But that did change with the diagnosis. I spent the time I had exploring ideas and strengthening my own, now it is time to reap the comforts that come from such beliefs. In time, I'll get much more into this, but I believe that there is nothing after we die. We simply cease experiencing and existing. I get that this is a terrifying prospect to some, which is why I don't go around to palliative care patients and say things like this.

So, my question is, why do some Christians have the audacity to not return that respect? If praying for me gives you comfort, have at it, but I don't need to know your praying for my soul. I don't want to hear of heaven and hell, thoughts of annihilation bring me peace, bringing hell into the mix just gives me anxiety, not because I secretly know it's real (frankly, no one really knows any of this stuff), but because I grew up in a very Catholic town and some ideas osmos even if you never enter a church.

(I do know the answer, when you throw infinite punishment into the mix then any tactic can be justified to avoid that outcome. It's just that this version of Christian love is abhorrent to me. It doesn't threaten my beliefs, it can't because there's no argument to it, just an emotional appeal, but in the dark of the night, when the sads have set in (and they always do), it can force me to spend some of my precious few remaining moments in stress and anxiety, instead of in hard won peace and serenity)

So here's my request: do whatever feels right to you, pray, so rituals, pet cats, honk at geese. Help yourself feel better, and if you think there are powers in the universe which can help, then have at it. But only tell me that I'm in your thoughts, or that your praying for me (without adding more detail). Because it does mean a lot to me, but I'm fragile, and I want to hold onto the peace I've built over my unfortunately short adult life.

NOTE this is not an invitation to debate my beliefs, to say not all Christians (I know it isn't all Christians), or even really to roast the mystery people I'm vaguely talking about. I will answer good faith questions, though

What I learned from the surgeons and their report

By now, last year, I had met with the surgeon who I had been referred to for abdominal pain. On the 30th I'd get the first CT scan, the one that missed or miss characterized everything, ultimately delaying treatment for a couple months.

Which doesn't matter. Those months would have only saved me pain (which would have been nice, obviously) but would not have changed any of the treatments or the outcomes, or anything else about my diagnosis. I'd long wondered if this was the case, or if these months were critical time lost.

Friends, I have read the surgical report for my unfortunate cytoreduction and HIPEC procedure, and it's doom was assured months before I ever sought medical attention for pain.

Going into the laparoscopic surgery a few weeks ago, we knew of a large (2.6x4.6x3.8 mm) goblet cell adenocarcenoma on the appendix, another infiltrating the umbilicus, which had been mostly destroyed by chemotherapy, and a bunch of small tumors on the peritoneum. The laparoscopic surgery found further small tumors on the small intestine and confirmed what the CT scans had indicated. All of this was extremely operable and I had genuine reason to believe I could be in the roughly 10% of patients who never have the cancer return, although I was still much more likely in the roughly 70-80% of people who get a good result from the surgery (this is where the prognosis of 5-10 years came from). For me, the hard part, the part where I'd get rejected, was in the lead up to the operation. Once I got onto the table, I was set.

The deep pelvic area, with its collection of renal and reproductive organs, is apparently very difficult to visualize through CT scans. Ultrasounds are better, but you need a reason to do an ultrasound, and they're still not perfect. And I'd even gone to a urologist, we did a cystocapy, and from the inside my urethra, prostate and bladder looked perfect.

But I still had a tumor growing there. It's infiltrated my rectum (no symptoms yet) prostate (restricting urethra some of the time, making urination difficult) and seminal ducts (a variety of sexual symptoms, none catestrophic). Possibly more. There was no way to cleanly and safely remove it. They tried. Which puts me in the roughly 10% of HIPEC patients who are found to be inoperable during the procedure. I've still not properly processed this fact.

One of the things that makes appendix cancers so dangerous is that you almost never find them on purpose, like you might with breasts or testicular cancer. A large number of cases are found during appendectomies (which is actually the treatment for stages 1-3). But if it doesn't happen to inflame the appendix, you'll go years, maybe even a decade, before its noticed. Which, for me, means there are no surgical options. There's only chemotherapy.

I don't know when I start again, apparently you heal your surgical wounds before you restart, and I don't know my prognosis, but I know it isn't 5-10 years. But I do know I'm still here, now, and intend to have a very good summer.

From the comments

James Petrosky: I missed the come back around - my doom was assured because the pain (naval, spread from appendix) and difficulty urinating (spread to prostate region) predate me asking for help by many months. By the time I had my first symptom, it was already too late for HIPEC. Sometimes we can do everything right and still lose. I'm still going to try and do it right, though, statistically that'll work out for most of us.

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