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.
Last Thursday, the 3rd, I met with my oncologist to plan when I'd restart treatment. My blood counts have never been particularly useful (even though I have advanced disease, they've never been above the cutoff point where we'd start to worry about them), but they're still lower than when I started treatment a year ago. The CT scan showed no new tumors in the scan area (I think head and legs are outside, and we know the pelvic area isn't imagable), including in lungs, liver, and bones. The existing appendix tumor remains, but is still around the size it was. It's difficult to image the diffuse tumor on the fatty layer that protects the abdominal organs, so there are still unknowns, but we've decided to delay our decision for a few months. This means they in late September and early October, I'll be doing the same round of tests again to see if I need treatment then. This is fantastic news for my incision, which will get the time to heal properly for sure now.
Over the weekend my partner and I traveled to Elliot Lake to attend a family reunion/baby shower in Espanola. Nearly everyone was there, including the enormous and adorable baby, and it was a fantastic time. I didn't realize how much more recovery I had to do, though, I've never been so tired from sitting in the shade all day.
This need for further recovery was repeated Sunday, when my partner and one or my brothers had a tourist day in and around Elliot Lake, and Monday at Science North. Eight months of treatment that saps your strength, followed by a surgery that steals your endurance, and two months of lying around trying not to harm an incision take nearly everything out of you. At least I have two more months to recover.
Traveling North on Highway 400/69, north of Parry Sound, where the good outcrops are.
Bear friend at the North West Trading Company in Espanola, Ontario
Bear friend likes the same things that poodles like
Additional bear friend, at the Trading Post on Serpent River First Nation
Deer also like what poodles like, tourist centre at Elliot Lake turnoff
Baby deer
My first giant roadside statue. By far the largest, in terms of magnification, I'll ever see. Elliot Lake's Atom Statue, on Highway 108 in Elliot Lake
A miner, next to the atom statue
The view from the lookout point in Elliot Lake
The wiring on this old tower is suspect, but probably fine
My brother and I, not entirely sure what we're doing in the art though
Inside the Science North dinosaur exhibition, Sudbury, Ontario
I forgot what sort of skull this is 😮
Triceratops so big
I loved the lighting almost as much as the dinosaurs
Carnotaurus's face so flat
T-Rex is perfection
Science North is built into the bedrock of the Southern Province of the Canadian shield (2.5 billion years old) and shows evidence of the impact that created the Sudbury basin. These shatter cones are visible as far away as Espanola, Ontario
Porcupine in the tree ❤️
Another view of the bedrock
Beluga whale Skeleton. Beluga whales are surprisingly small
I really liked this porcupine, and the beaver was resting in its lodge for most of my visit
I don't have a lot of heroes, but Chris Hadfield is about as close as it gets
Fin whales, however, are huge (this Skeleton covers three stories of the building)
Moose cosplay would be exhausting
I just really like rocks, okay?
My brother's new cat, Ollie
From the comments
James Petrosky: Anyways, this trip crossed The Atom, three trading posts and Science North off my todo list (which is a physical list on real paper in an actual notebook now (it has a dog in a doughnut on the cover). Meeting the baby was the purpose of the trip, but some light multitasking is good
I did not hold the baby because I was exhausted by the time I arrived and he likes to kick, which would have been bad for my incision. I hope I'll be able to rectify this soon
James Petrosky: I forgot to include the best dinosaur 😮
One year ago today, I recieved a somewhat unexpected call from a surgian I'd been seeing about a mysterious, but monstrous, pain I'd been having on the right side of my abdomen. She had figured out the likely cause of my pain. It was cancer. I don't remember much else about that day, don't remember when doctors started using phrases like "stage four" and "high grade". I know that instead of waiting weeks for an ultrasound and months for a CT scan like I had for the diagnostic stage, I had both scheduled by the morning of the 5th to confirm what we now all feared to be true. August 2nd of that year was one of the worst days of my life (September 2nd of that year, when I first met my oncologist is also pretty bad, and June 9th of this year is worse).
August 2nd, 2023 is not like 2022. I've come much too far, underwent way too many unpleasant, painful and nauseating procedures, for that. I'm not here to tell a story I've already told, to dwell in much worse times. We're here to continue our stories. To live, be joyful, experience whimsy, to pet cats. To live in the best way the fates allow.
August 2nd, 2023 is my First Cancerversary. It's an idea that's been rattling around in my head since late June that was as fun to do as I hoped it might be. It's a celebration of life, of survival, and of joy. With the surgical recovery and a few other things going on in my life, I couldn't have a real party with human guests. But I've got big ideas for next year, because birthdays may feel less impressive and meaningful every year (they aren't though), marking time with cancer becomes exponentially more important and noteworthy with every passing year.
I don't want anyone to think this is just making the best of a bad situation, or that I'm putting on a smiling mask, or anything like that. I am genuinely joyous and excited about this. I did originally intend it as more of a silly joke than where I ended up, which is physically, mentally and emotionally exhausted after two long days of work. I'm left with a bittersweet feeling, which feels right, and feeling anything after over a decade of mental health struggles is fantastic.
From the comments
James Petrosky: Part of the reason this took so long is that there's a video, too. I'm happy with the result. I've been making short daily videos for a few weeks now, too. It's nice to have something to pass the time.
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.
Hanging with my main poodle, after my parents had returned me from Elliot Lake to Midland
I have too many pushes, every time the nurse comes (daily) I move them to one side, then back again at night. It's exhausting.
Down by the bay (Georgian)
Elmvale, Ontario, assisting in fetching dinner for a games night
All cats are fun to annoy, Thomasin is the best cat to annoy
Royal Victoria Regional Health Centre, home of the Simcoe Muskoka Regional Cancer Program, where I receive my treatment
This is the third time in my life eating Taco Bell. We'll never know if it's the food or cancer that makes me sick
Lilly and I, enjoying our garbage (being good raccoons) after a day of medium yard work AKA cutting back weeds that went crazy when I was in Elliot Lake for a month
Hanging with my goose friends
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.
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.
Traveling (inside downtown Toronto)
Hanging with the Couch Monster
Mt Sinai doesn't have any signs or letters on buildings to take photos with. It's very frustrating for my naritive project here
Outside Mt. Sinai
Turns out half a day is all I can do right now
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.
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.
Suspicious berries in Elliot Lake (actually just mountain ash)
Northwest Trading Company, Espanola, Ontario
French River Trading Post, French River, Ontario
Home!
She doesn't like being held, but endured it for me
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.
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
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.
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.
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.
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.
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.
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.
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
I can noo longer guarantee this, but it seems unlikely it was you ↩
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.
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.
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
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.
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.
