Cancer Selfies

Trips & Treatment

This set of photos was taken over the past month.

I can't remember if I've said anything about the CT scan I got a few weeks ago, or the blood work I had done before I left for Bancroft, but that has happened, and it's time to see my oncologist. The appointment is tomorrow afternoon.

I don't have a good understanding of how people think I'm doing. I know I've been pretty vocal about how the surgical recovery has been going (very well, overall, but further gains are likely to be small, although its possible I don't yet know my capacity in some regards). But I have been less vocal (I think) about cancer symptoms.

I haven't been able to sleep through a night in weeks. I'll wake up, with my guts feeling like their solid, in the middle of the night. Sometimes water makes me have to use the bathroom with urgency. Sometimes it makes me throw up for a half an hour. Either way, sometimes I can get back to sleep, sometimes I doze until noon.

The list of things my dietician recommended I avoid a month or two ago has become largely mandatory. The small amount of coleslaw you get with fish and chips is usually fine, but salad or a helping of broccoli is a mistake. Fish never seems to be a problem, chicken is fine unless fried, and most red meat should be avoided. These rules must be followed exactly when far from home, or if I want to travel the next day, but can still be relaxed a bit if I'm staying in the Midland area.

The combination of chemotherapy and sleeplessness, at least, have left me extremely forgetful, clumsy and sluggish. I keep losing my keys. I've forgotten how to do basic computer stuff I've known for decades (or have tried to do it the Windows 95 way). I cannot focus on books, even though I got a fun adult book about dinosaurs from the library. My cooking abilities, long atrophied by years of deep depression, can't manage with my boring diet, tiny kitchenette and lack of energy to do dishes or other chores.

There are pains. Pains in places I especially don't want them, places that might indicate tumor growth (but probably not spread). But are they the sort that predate all this? I can't remember. I'll bring them up.

I'm extremely tired. I'm not particularly jazzed about continuing to do this. I've grown more and more convinced that the Bancroft trip is my post surgery peak, and that it's slow decline from here on. Those sort of thoughts are the way of madness, but the nature of the recovery and the disease means there will exist a peak or plateau.

Two weeks ago I was pretty certain I would not be restarting chemotherapy this time. The CT scan report only reinforces this conclusion. But the last few weeks have been rough, and I'm a lot less sure now.

<figcaptionHuntsville sculpture forest

From the comments

James Petrosky: When I started, I had many reasons to take my selfies, but I was pretty certain they weren't for me. I have no idea if they were then, I don't have access to that brain state. They're absolutely, in part, for me now

James Petrosky: I took a drive, ate a shawarma, almost ate some additional Taco Bell (the line was too long), had a nice drive until I met a raccoon, found a potential corn maze that's very close, and feel a bit better. It's hard to make yourself eat when your stomach is off, even when you know it'll make you feel better. And I need to try harder to get out of the apartment every day, even for a little walk, even if it's hard once the October storms come and it's always so rainy. None of these steps solve anything, but it isn't about solutions, it's a about comfort. For that reason, I'm happy to see my oncologist tomorrow. I get to do a trip to Barrie, I get to talk to people and be around people who, sadly, understand my situation. I get to go for pho after, which is damn near the perfect food for if you're chronically underhydrated like me.
I don't like chemotherapy, but I like trips and cats and people, so if it's time for it, then I look forward to quiet days laying in bed watching old noirs.

Pre-paliative CT scan #2

I have a CT scan in an hour.

I've had anxiety about CT scans before. But treatment reduced or eliminated symptoms, so in my memory I wasn't too worried.

I have no confidence about this one. Symptoms are tolerable, but measurably worse. And the source of the agonizing pain, the primary symptom that told me something was wrong, has been eliminated perminantly twice over.

I'm in the dark. I don't talk to my oncologist until after Thanksgiving.

I'm tired. I don't want to be a professional cancer patient anymore. I just want this to be over.

But that's not available to me.

From the comments

James Petrosky: Thanksgiving is October 9fh. I see my oncologist on the 11th.

James Petrosky: It went fine. My physical reaction to the machine and the contrast was the same as always. I think my anxiety spike is getting worse each time, but I don't really remember the scan I had in the spring very well now, and my anxiety has been much worse post surgery.

I think this is the first time I posted about cancer

I really wish I better understood why this is a symptom, probably something to do with the pain.

Anyways, we didn't know it, but I've now been talking cancer for two years. I have no idea what to think of that.

The following was originally posted September 9, 2021

Super glad my body has decided that hunger is boring and unhelpful and instead goes all in on confusion and irritability

Science News: More people under 50 getting colorectal cancer

I was never a joiner, why'd my stupid body think this was where the cool cats were at?

Science News: Why are more people under 50 getting colorectal cancer? Scientists have some clues

From the comments

James Petrosky: The tldr is that they're recommending¹ you talk to your doctor if you've got two of the following²:

• Abdominal pain
• Rectal bleeding
• Diarrhea
• Iron-deficiency anemia

I had pain and diarrhea, but the pain came much too late, and my digestive system has always been a bit unideal so I never thought much of it.

Trading normalicy like currency

I have a few ideas that I don't see a lot in cancer circles. Nothing off the deep end like dubious treatments, faith healing or denial (but then those ideas are everywhere across the internet, you'd have to try to avoid them). Simple things, analogies. My favourite is cancer as a siege, rather than a battle. When I pass, I won't be because I lost the battle to cancer, I lost that battle up to a decade ago, years before most of you knew me, and well before anyone would ever do any screening (possibly, although not likely, before my oncologist was even a doctor). Cancer is a well provisioned army, giving seige to your body. Without help, you will sucumb. There is no dishonour in that (which I feel is an unintended implication of losing a battle, you may differ, that's fine).

I think this is the first time my second favourite analogy comes up (it comes up in the comments, not the post). I think it applies to any big change in your life, at least so long as you can accept the implications piecemeal. Those days are completely blocked off to me, they're just a haze of belly button pain, a new, sharp, existential terror, anxiety and a complete lack of sleep. I don't remember what it all felt like, but I do know that I needed those pain killers, and that by needing them I couldn't do a huge part of my job anymore. And that put a timeline on telling my boss about the situation, which put a timeline on letting HR know, etc.. And I know that doing preparation for a colonoscopy at 35, in a maintenance shop with several middle aged men, was only going to beg questions I did not yet want to answer. And that once you've taken a couple of days off for medical testing, even the youngest guys start to get wise.

Every medication, test and appointment brought more scrutiny, and how could they not? People care, they're curious. And when all you want to do is have eight hours a day where you can pretend everything is normal, each bit of that attention spoils your ability to pretend. Until you can't, and you tell everyone how dire the situation really is.

I am glad to be well beyond this stage. I love the currency metaphor for the period in my life between diagnosis and chemotherapy. But I'm beyond that chaotic mess of emotions and personal ignorance. I cannot say I am happy to know everything I've learned in a year, but as best I can remember not knowing anything was much, much worse. Its come up a few times in conversation, but we all genuinely wondered if I'd make it to 2023. And that uncertainty felt much worse to me than knowing that I have between 400-600 days.

The following was originally posted August 26, 2022

Good news! I have something for the abdominal pain now.

Good news! It works really well!

Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.

From the comments

James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)

James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.

James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.

What they don't tell you is that normal is the currency you pay along the road to treatment.

And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.

That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.

I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)

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.

At the risk of oversharing

Cycle 6, Day 10

The bone pain was excruciating, second worst continuous pain I've ever felt in my life, but fortunately only lasted two days. And I was able to be active, it really only hurt when I tried to rest. I did all my Decemberween projects during the worst of it. Don't recommend, but I know what to expect next time, so I'm not afraid or anxious about facing it again.

I'm pretty open about almost everything I'm going through. For reasons I cannot explain, sharing extremely private information about my diagnosis, prognosis, etc., is second nature to me. It would feel strange for me not to share. But the fact that I'm stuck inside my apartment several days a week because of diharea (colloquially, although much of the time medically) seems to embarrassing or crass to share. But I'm feeling spicy today, so here's the facts: bowl cancer, chemotherapy, and more than a few of the other medications I'm on really screw things up, I keep immodium on my person at all times (and have since the spring). I've made it work, but I've missed out on a lot of stuff I've wanted to do (nothing planned, but nice days for walls and such).

Humans will adjust to damn near anything.

From the comments

James Petrosky: In case you're wondering: it's as delightfully soft and squishy as it looks. 10/10 strong recommend

Signs of winter

Cycle 3 Day 4

Its been over a year since the then unknown pain stole my preferred sleeping position (on my side, body pillow between knees to help with my back) from me and forced increasingly elaborate pillow piles to prop myself up to find rest. And today, today I successfully had the most restful nap in that old position. Because of the PICC, I can only lay on one side, and I can't do it while I'm receiving chemotherapy, but this counts as a major quality of life win. I'm choosing not to read anything more into it, but I am excited to share the news with my oncologist next week.

They've closed down the beach for the season, and left me with a forest of signs. Two of three restaurants are closed until the spring, and I plan one more takeout poutine from the last if it's still open this coming weekend. The normal cycles of ends and restarts are always a thing I like to mark, to notice, but they seem especially bittersweet right now. Fortunately there are these small victories (and the fact that the best poutine in the area is open year round)

Things are already going better after one cycle

Cycle 1, Day 12

I haven't felt this good in months. My pain levels, while still much higher than my pre cancer baseline, haven't been this good in months. I have energy, apatite, drive. Chores are caught up, projects are being done, hobbies being perused. But there's so much to do before Cycle 2 starts Thursday.

From the comments

David: So you can do this ?

James Petrosky: David I'm going to keep going for sure. It's not a war or a battle, it's a seige. I'll hold as long as I can.

James Petrosky: I saw my poodle pal today ❤️ It was almost too dark for her goofy face

Another morning squish

Early morning, with Felexine. I haven't really slept well at all, the pain has been too intense. I don't think anything has changed with disease progression since last week, I think it has to be behavioural. I'm pretty constipated from the T3s, and that is at least part of it. I need to call my nurse practitioner about work paperwork regardless, so I'll ask then.

I'm going into work this morning to hand in my short term disability paperwork. And to tell the final people who don't know what's going on, and telling them I'll be away for at least six months. I was dreading this all last week, but after Friday it doesn't seem nearly as bad. The benefit of perspective, I guess. Everyone's going to be supportive, but it's still going to be an exhausting morning.

Evening squish

Maurice and I, exhausted at the end of the day. Turns out the 5km and the agonizing pain of the drive home (just 20 minutes, but a 20 minutes that stretched forever) was overdoing it. I've barely been out of bed since, except to be bad at labour solidarity and buy some pizza.

The fatigue has crept up on me so carefully and quietly that I only noticed after it became completely overwhelming.

I still experience happiness and joy, and am still driven by hope, and these things aren't failing. But I'm just so tired now.

Thank you, everyone, for your kindness and your words and your attention. It's so much easier to stay hopeful when I feel noticed, seen, wanted. You're all amazing ❤️

Afternoon squish

Afternoon. I over did it on the walk. I nearly pulled over several times during the drive home because sitting is one of the worst positions to be on, but walking is fine, and helps a lot in the short term. I want to be able to drive myself to most of my appointments, but if it keeps up like this, I'm not going to be able to. Long term I have significantly more existential fears, but short term it's all about losing normal, and I'm terrified of losing the normal of mobility in my life. I have enough friends and family to get me through this if I do, but it would be devistating for my mental health.

A morning squish

Morning. I'm a side sleeper, and I haven't been able to side sleep for months and months because of the cancer pain. Even now I'm still not good enough at sleeping propped up that I can reliably get a good night's sleep. Last night I did not sleep well, which is fine, I'll just need a nap later.

Nessie and her soft soft corderoy belly is mg favourite Squish. I set them up on the other side of the bed, but she's always within reach if I need a quick squish. I should have gotten something like this years ago, it's so pleasant and comforting. Don't be too adult or manly or whatever for something to squeeze.

I finally have painkillers!

Good news! I have something for the abdominal pain now.

Good news! It works really well!

Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.

From the comments

James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)

James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.

James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.

What they don't tell you is that normal is the currency you pay along the road to treatment.

And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.

That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.

I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)

Hunger

I reflected on this on September 8, 2023

Super glad my body has decided that hunger is boring and unhelpful and instead goes all in on confusion and irritability