Cancer Selfies

Chemotherapy is life

July 31, 2023 - The tests are all done. There weren't that many, two passes through the CT scanner and three vials of blood (no urine, I sat uncomfortably for nothing). From these my oncologist (with the assistance of the radiologist, who I've never met but has had a tremendous impact on my life) will be able to tell how aggressively my cancer has bounced back in my four months without chemotherapy. A slow recovery for the cancer is obviously ideal, that gives me my best chance at a better quality of life, but that would also mean we could delay a few more weeks to allow the incision to heal more fully. But, in a less ideal case, we could start chemo sooner, and accept a longer healing period for the incision. The first case is preferable to me for many reasons, but since most of my physical restrictions were lifted last week when I saw my surgeon, most of my anxiety about the situation has lifted.

I recieved my diagnosis around this time last year. I barely remember any of it, things moved so fast, there was a new appointment every few days, I was in so much pain. Starting chemotherapy was terrifying. You can lie to yourself, pretend a bad thing isn't real, for a long time. It wasn't the CT scan, booked in days when before it took months. It wasn't the biopsy, which somehow hurt more than the tumor in my belly button. It wasn't the PICC installation surgery, even though seeing the little tube next to my heart on the scan screen was the grossest thing. Or even my first conversation with my oncologist. It was when they started the chemotherapy infusion that it became undeniable. Those chemicals are poison, the only excuse to deliver them is cancer. After then I had no choice but to live in the cold light of that fact.

A year gives us opportunity for a tremendous amount of change. Not always the way we want. Today, on the night of the final day of July, I am excited to restart chemotherapy, tobegin my third course of treatment. Excited like I was for Christmas when I was seven. Because I've fully accepted that, a year ago, I was given the death sentence of high grade, stage four appendectal cancer. I can never change that. I am at peace with it. The totality of it. But I still have time, and I won't get to everything I want (but wouldn't no matter what age I lived to), but through the scientastic magic of modern medicine, the chemotherapy will help me do more of those things.

I'm lucky, my mental health has so far allowed me to choose the sort of hope that I'd available to me. The call to despair hasn't been compelling most of this adventure. I rolled my eyes at radical acceptance when I was doing DBT years back, but it's helped free me from the perminant existential crisis my situation would otherwise require of me. I'm calm. I'm joyful. I'm at peace. I'm not putting on a show. I'm very excited for the next year, and for the medicine that's going to take me there.

From the comments

James Petrosky: At this point, I think the losses in cognative ability are probably perminant. I'm fine comversarionlly, was never particularly skilled with the written word and maybe even improved over treatment from practice, but I notice I'm worse at abstract thought. Last week I got so confused I couldn't recognize that a set was obviously countably infinite (more relatably mental arithmetic is much harder than it was a year ago, and I need pencil and paper for things I've been able to do in my head since grade 9). This sort of stuff has been a pretty important part of my sense of self since around grade 6, when math became fun, and this change causes me more mental friction than my own mortality these days. This, too, must be accepted, and perhaps the joys of pen and paper geometry rediscovered.

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.

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.

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.

Exhaustion is bad for mortality salience

Cycle 16, Day 12

Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.

I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.

For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week

From the comments

James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.

James Petrosky: My personal nurse has been a tremendous help, though

Cathy:

We're moving on to surgery!

Cycle 12, Day 12

Yesterday I spoke with the surgical oncology team. The CT scan looks great, we're officially moving on to the surgical stage of treatment. While I'm waiting for a date, I'll keep doing chemotherapy (modified, we're discontinuing one of the drugs for now), I'm very excited for this development. For now, I'll have a lot of paperwork to do and a lot of anxiety to cope with, and there's a chance I'll be on chemotherapy longer at this stage than during the first stage, depending on how scheduling goes. But it's a new day, and I'm more sure now than before that the light at the end of the tunnel isn't an oncoming train.

From the comments

James Petrosky: I'm going to note again that this first surgery, a laparoscopy, is entirely to help decide if the full surgery is an option for me. If the cancer is growing in vital blood vessels or nerve clusters then that's the end for surgery. Making it this far is fantastic news, but the real hurdle is a good result on this first operation.

I'm cautiously optimistic.

Good days pay for the chemo days

Cycle 3 Day 10

We're getting what's likely to be a final reprieve before the winter descends upon us, and I intend to take best advantage of it.

Back at the start of this, I said the currency you spend is the feeling of normal. We left normal behind months ago. The new currency is the little experiences I can jam into my good days. Seeing a raccoon, petting a dog, talking to someone I haven't seen in a while (or have, and want to talk to again), interacting with all of you. Little things. And I need to save up enough so I can pay the toll and make it through The Chemo Days.

Ending cycle 2

Cycle 2 Day 14

I spent a few hours at the cancer centre today, having my once per cycle checkup with the oncologist, and getting blood drawn to monitor a few things, most importantly to me immune system counts (mine are pretty good, given my situation). While there I once again browsed the library of pamphlets. I counted twenty five different specific cancer type pamphlets, only four had photos of people who might have been my age. Three of the four were reproductive cancers. The remainder, including colon, featured people decades older.

I'm very tired, my mood has fallen a bit, but I'm ready to start Cycle 3.

Sweater weather forever

Cycle 2 Day 10

Its Thanksgiving weekend in Canada, and we're having our turkey dinner tonight. We rarely have it on Monday, the day Thanksgiving actually falls, because you have more non work days to eat delicious leftovers. This time, it's not work, but the start of Cycle 3 on Thursday, that motivates celebrating early.

To my Canadian friends, I hope you have the Thanksgiving you dream of.

To my non Canadian friends, have a wonderful weekend.

From the comments

James Petrosky: Another of the poodles on their own

James Petrosky: The menacing October sky of Lake Huron

James Petrosky: Thanksgiving dinner round these parts (this little cottage, specifically, and not necessarily anywhere else) is a roasted turkey served with fresh (never canned, canned was served at a family gathering once years ago and that faux pas is still talked about), mashed potatos, dressing (no stuffing is served), gravy, boiled turnip and steamed green beans. Peas often replace the beans, but we found some fresh ones this week.

Unfortunately neither of my brothers, nor my partner, could make it. But we do the best with who we have (namely, my parents and the poodles)

James Petrosky: In case you were wondering what we watch on tv during and after dinner, is the United States National Park Service Alaskan bear cam and a collection of webcams in Siberia.

James Petrosky: Sunset at Woodland Beach

First Thanksgiving after diagnosis

Cycle 2 Day 9

Today is the first properly cool day yet, we've had a some chilly mornings, but days have made it to the double digits. Not so today. Today I learned I'm going to need to get used to wearing a lot more sweaters than I've ever had to before.

I'm choosing to take this as an opportunity rather than a setback, because sweaters are quite nice and I adore cardigans.

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

PICC install day

The PICC line, for those (like myself) who were unaware, is a line inserted into a vein in my non dominant forearm that extends to the heart. I'm glad I was ignorant until minutes before the procedure, because that is the stuff of nightmares for me, even if the actual result felt, at worst, a bit weird

On the types of chemotherapy

There are many sorts of chemotherapy. Which makes sense, cancer is a collection of diseases of various tissues.

There are many sorts of chemotherapy. Which makes sense, different tumors and different cancers are going to have different vulnerabilities.

There are many sorts of chemotherapy. Which makes sense, side effects are an important consideration, and the risks must always be balanced with the benefits of the drugs.

There are many sorts of chemotherapy. Which makes sense, some are used to prepare for surgery, or to remove the cancer completely. Others are palliative, used to prolong life and minimise pain.

Friends, my chemotherapy is palliative. Which isn't to say my oncologist has given up on me, this round of chemotherapy is simultaneously the correct standard of care and the necessary first step to get a more advanced treatment.

The PICC goes in tomorrow, and the first round of chemo starts the day after. I've never been more tired and overwhelmed in my life.

My parents are visiting this week, which is a great comfort, and they've brought my best poodles, Annie (golden labradodle) and Bessie (black standard poodle). I've saved this post for the day I got lots of good photos, maybe it'll help lighten things a touch.

I told my parents today

This was written on September 4th, 2022

With my best gal, Bessie. Annie instinctively overcame her weird anxiety for me when I arrived, which was wonderful, but Bessie has always been this sort of delight for me ❤️