When I moved a month ago, I left my old health region. This means finding a new primary care physician, palliative care physician and oncologist. I'm still working on a GP and waiting on a referral for a local palliative care doctor, but today I met my new oncologist.
In the past month, my symptoms have gotten noticibly worse. The pain in my kidney is more severe, and more common, and the other one has joined in, too. Plus, lots of random pelvic pains. Codine is controlling it well, but this is the first time since diagnosis I've needed regular pain control.
We'll be restarting chemo as soon as we can because of this. There are tests and paperwork to get out of the way first, but my doctor would like to have it going in the next couple weeks. Between the first and second rounds of chemotherapy, I had six months (most of which were spent recovering from surgery), this time I'll have around two. I'm doing well, given the situation, and am in good spirits, but the disease is progressing, it cannot be stopped, and the outcome has never been in question.
And as a way to show how completely this experience has changed me, I confidently, and completely without anxiety, asked how much time I have left. And the answer didn't phase me. Human beings can adjust to, and become skilled at, anything.
A year.
Which is an upgrade over what I thought this morning.
Killing time in Sudbury before my appointment
There's a lot more green at the Northeast Cancer Centre compared to the Simcoe-Muskoka Cancer Centre, but otherwise they're very similar. I didn't miss hospital waiting rooms, but they come with the territory
Outside the thrift store, after learning that the one I actually wanted to visit was closed (its moving and will reopen soon, which didn't help me today)
One of my favourite bridges! Highway 17 at the Spanish river. Just look at those beautiful trusses.
From the comments
James Petrosky:I share a lot, but also don't talk about a bunch of things. January and February were very hard for me, having a birthday that was poorly marked (chemo's fault, it was celebrated eventually) when you know, with low but significant, certainty that it will be your last is one of the most difficult things I've ever had to do. I'm not excited about doing it again.
No, you (everyone) couldn't have done anything to help, or I'd have asked. I almost never talk about it, but the cancer centre does have some mental health support. I've made extensive use so far.
I think, through culture and experience, we all understand that cancer brings a lot of pain. Friends, they don't lie, but I've never seen anyone talk about how weird that pain can be.
This message brought to you by my body interpreting skin stretching, of the regular sort that might happen if you were laying on your side, as somewhere between discomfort and pain.
From the comments
JamesP:
In some people and cases, constipation can register as back or hip pain. For me, it's every time I need to use the washroom.
JamesP
And, just for fun, I get random stabbing pains throughout my pelvic region. I suspect this is an impacted nerve. It can happen any time, but generally comes in clusters and usually with other sources of pain
Christine Otterman: I guess it's got to be an all around unnatural experience. It would be hard to not be suspicious of what it is and what it means. It's probably difficult to articulate, therefore no one talks about it!
Janet Dorion That sucks. I can't imagine. You are so strong!
James Petrosky It's a bad situation, but I'm usually feeling okay much of thday, although the evening is devoted to pain management so that I can enjoy the next day as much as possible.
Brennan Moline: Susan Sontag, in writing about her own cancer, once discussed how pain tests the limits of human language. That it becomes incredibly isolating because it's impossible to truly explain to someone else.
Anyone else find that opening and closing curtains is one of the most surprisingly mentally taxing things you do daily?
This post brought to you by ADHD
From the comments
James Petrosky: I have no choice here, my apartment faces the enterence and I have no desire to flash all the retired people, but at my last place I think I touched them once every few months, more to track the sun than anything else.
After eight days the tap water is officially safe again!
From the comments
James Petrosky: Which is great for us, but a week is not a long term advisory, and at least 28 First Nations communities are still under long term (over one year) advisories. A week sucked, a month is unimaginable to me, and I have no words for what a long term advisory would be like.
We're on day five of a boil water order and it's rough on regular people, but between my kidney and the cancer I need to drink so much more, and the whole process is exhausting.
From the comments
James Petrosky: 5 days is a lot, but it's also fucking nothing. Neskantaga First Nation has been doing it for 29 years pretty much only because we suck and are racist.
Was up half the night trying to decide if I should visit the hospital because of a new, exciting and particularly spicy pain. Thankfully I don't remember much, but I fell asleep eventually and woke up with regular levels of pain.
From the comments
James Petrosky: It didn't feel anything like another obstruction. That was distinct. I think it sometimes just really sucks to be conscious for no good reason.
James Petrosky:I have chores and hotels to book and I just can't get enough give a fuck going to do any of it. If I don't soon I'm going to ruin my whole trip and I just can't care.
We've given up on unpacking for today, and are going to take tomorrow off to lay around and do nothing. We've earned it.
From the comments
Brennan Moline: How is Thomasin adjusting? She looks comfortable
James Petrosky: Brennan Moline she was overwhelmed the first day of packing, and at the hotel during travel, but has been excitedly exploring and plotting escape into the hallway for days now. She's probably doing better than I am
James PetroskyIt helps that the bed and bedding are the same, and she still has her cat tree. The constants are safety when overwhelmed
Did a lot of work today, and am very happy with progress, but the best part of the day was the 15 seconds I got to pet a golden retriever
From the comments
James Petrosky: His (her?) name is Sadie and I've been trying to pet them for years, but they've always preferred to play with the poodles, and honestly I can't blame them
Moved into my new apartment! Lots of unpacking done! It's a very nice place, except there are no overhead lights and my phone charge socket is switched.
I'm at a hotel in Sudbury, my destination for the day. A few things:
Thomasin is enjoying exploring the hotel room, I also let her out on the car while I was taking bathroom breaks and she loved exploring there, too. She's only left my apartment once since I adopted her, so today is a very big day
There is a pagent going on in the hotel for adult women. I didn't know those were a thing. It's pretty cool. I chatted with someone I assumed was a judge but who was actually a really enthusiastic participant
A lot of the tv stations I can receive are American. I will never, ever get used to drug ads. But they're a price I'll pay for The Fifth Element, which is easily the best thing I've ever seen in a hotel
From the comments
Kate Lux: Yeah, there are "Mrs ___" pageants (25-40, I think) and I think ones for seniors too.
James Petrosky: Kate Lux the world can be a strange and beautiful place. It does explain the women my age in prom dresses I saw when I arrived, though.
James Petrosky: Even in a strange place like Sudbury, you don't have weddings on a Thursday. Which was the only reason I could think of
For a few months now, I've been taking lorazepam daily to help treat insomnia (no idea the cause of it, chemotherapy and several of my side effect drugs can cause it, and while I don't consciously experience the stress of my situation, it is extremely stressful). Last night I thought I was tired enough to go without. I was not. And, at this stage of disease and chemo, no sleep means nothing gets done in a very literal way.
And I have a lot to do. I've been thinking about moving to Elliot Lake (where my parents live, and much nearer my brothers and extended family) for months now, and now I have an apartment and move in date. Tentatively I'll be moving May 1st. This round of treatment is done on April 9th, which should work out fine. So long as I only spend 4 or 5 days every cycle in bed.
This isn't the reason I wanted to move back home (for a very regional definition of home), but I'm still happy to be doing it.
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 😮
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
