Cancer Selfies

Cycle 8 Day 14

Carcinoembryonic antigen (CEA) is a blood marker important in diagnosing and monitoring especially colorectal cancer, but also can be meaningful in other cancers. A blood test messing CEA level can be an important part of diagnosis because the test is easy to do (simple blood test with no preperation requirements). It is also useful for monitoring for reoccurance post treatment, for the same reasons. It's part of my regular bloodwork because it can also be used to monitor if treatment is working. In all these cases it isn't used alone, because things as diverse as smoking, autoimmune diseases and liver diseases (because of the cancer, I have fatty liver disease).

My CEA level has been within the "normal" level throughout my treatment. I'm under the impression that, until today, it hasn't been particularly useful to my oncologist. Or, more likely, it hasn't been useful to her in explaining my condition to me. Liver and kidney monitoring numbers have been discussed much more this round of treatment.

Until today. In the last two weeks my CEA level doubled, putting it comfortably over the "abnormal" level. My understanding is that the number itself can tell you that tumors have grown, but cannot tell you how much. For that, you need other tests, in my case another CT scan. I know, from experience, that in a critical situation, you can get a CT scan same week. Mine is scheduled for mid March, after two more chemo cycles and at least one more blood test.

Because it's a couple weeks until the CT scan, at a time we were already planning to have a CT scan, I'm not particularly anxious about this news. This could be the point where my current chemotherapy is no longer effective, which would be unfortunate, but is also inevitable. It's served me well for a year and a half. There are more chemltherapies available to me.

I'm not anxious or losing sleep over this, it's not good news, terminal cancer is all about inevitabilities and I've had countless hours to process this. I share a lot, but no one wants to read about diahrea, so you never hear about one of the most important symptoms/side effects. I've had diahrea continuously since October, except when I take Imodium. It's impossible to tell how much is the cancer and how much is the chemo, but it's been getting worse, slowly but continuously. I'm not happy to hear this, but it's not terribly surprising.

For now, this doesn't change anything. I'm still getting my regularly scheduled chemotherapy. I'm still going to live my life as best I can. I'm not more anxious than I was yesterday.

From the comments

Tara Kraft:i really appreciate this information. I have genetic risks, and friends and family dealing with cancer, and often i think people want to make the progress info generic to spare us details but (even though I now every person is different) this just helps me understand the kind of decision making and analysis that is happening.

Nap Calculus

I have to do groceries (or at least visit the pharmacy) today and I want to do bedding. Bedding is risky because you can't take a nap mid way, and mid way naps are how I do everything.

From the comments

James Petrosky:Great victory if I succeed. But such fantastical risks. And cancer fatigue has teamed up with the worst depressive episode I've had post 2019. I'm no longer built for these adventures.

James Petrosky:I sat down to put socks on and now I have a cat on my lap (and no socks on)

Pre-Chemo Prep Work

I have to leave for chemo in an hour, and like always, I feel a profound dread about it. I have to eat and I have to clean the litter box (yesterday would have been better) but I can't get out bed.

From the comments

James Petrosky:The force of responsibility will have me take my medications and will get me to the appointment on time. Of that there is certainty and no choice.

James Petrosky:Other than the dread, I feel great. In six hours, I'll feel as low as I ever have. It's not a choice, really, but if it were it would be a difficult one every time

Post-Birthday Recovery

When you're recovering from chemo on your actual birthday, the cake has to wait until you can handle it.

Not pictured: the pad Thai I had in Wasaga Beach (way better than you'd expect from Wasaga Beach in the off season) and the short walk I had at the marsh (cut short because it was too muddy for my foot ware)

The present contains a heated blanket that Thomasin has already been eyeing

Birthday #37

Thank you, everyone, for helping me mark my 37th birthday. It's always been important to me, but I'm terrible at doing anything about it. At least this time I have the excuse of recovering from chemo on Tuesday this time . Fear not, I'll visit the mall for overpriced chocolates as soon as I'm able, and when my immune system allows there will be sushi. Just because I didn't get to everything today doesn't mean it isn't happening.

Also, Thomasin had a great day, we slept in until 130 and then she got some fresh catnip (that she went for over treats). She's still recovering on the cat tree.

Pre-Chemo Anxiety

Until now, I've come into chemo week with a sort of grim determination. It's not something I want to do, but it was fine. This week I'm filled with a sort of dread. I feel sick about it, and anxious enough that I'm having a hard time sleeping and doing my preparation chores. And this is cycle six, there are six more after this one.

I'm not at the point of refusing treatment. I don't know if I'll ever get there. But I absolutely understand why people refuse chemotherapy, even if that has harsh consequences for their prognosis.

From the comments

James Petrosky:I'm trying a stronger medicine this cycle. It should help with nausea. I hope that it will have a effect beyond the three days I take it, but we'll see.

After cycle six I get a CT scan, and we learn how the cancer is progressing. I feel really sick most of the time, but I think it's all side effects and not symptoms. Eventually there is going to be bad news, though. Disease progress is inevitable, and we're only trying to slow it.

Sometime after the CT scan, we're going to take a week off (have a 21 day cycle), and hope the extra recovery time will help me through the final six cycles of this treatment plan. I'm really looking forward to it, it'll allow my white blood count to recover (I'm in pretty rough shape right now, but not critical) and I'll be able to catch up on some chores I haven't been up to. It will be nice to be able to properly take care of myself again.

James Petrosky:My oncologist, and oncology team, has been extremely understanding. I don't know if I could continue if I had a less capable and kind group of people.

James Petrosky:I haven't been taking pictures. I want to, on one level, but I just haven't been feeling like myself for months. And it's hard to be excited about representations of yourself when you aren't feeling like yourself, and especially when you don't look like yourself. I've had plans for a video I'm really excited about doing for over a month, but I can't do it. This is really hard on my mental health, and it might be okay if I wasn't so sick all the time, but it's all really starting to add up. I'm really excited about that 21 day cycle coming up.

Pre-chemo anxiety part 2

I'm doing a lot better today. I solved a problem with my drug plan that was killing me with anxiety and actually ate. I don't want to chemo, because who would, but I'm ready.

From the comments

James Petrosky:I had my regularly scheduled call with my social worker from the cancer centre today. This is the third consecutive time where had the appointment been a day earlier, I'd have had something major to work through, but instead I've been able to deal with my problems on my own/with friends and family's support. I'm not complaining, I just think the timing is pretty funny. Plus I'm proud of myself for being able to work through my problems pretty effectively.

Junk Store Journey

A friend and I visited some antique stores today. I was genuinely surprised I could handle an outing this intense (several hours of winter driving, lots of walking, not being near a bathroom at all times) but it went great. So great that I forgot to get more pictures (although there weren't many truly cursed items, and there were no fun hats to try on). I also tried Faygo, because a grocery store had a bizarre selection of drinks (it was fine).

From the comments

James Petrosky:I found three art prints I'd have loved to buy, one of my #2 or 3 favourite Tom Thompson painting and to Benjamin Chee Chee goose prints (one is the goose design on my goose hat and toque, the other was another in that particular series). I'm going to think on the goose prints, I'm not really buying stuff anymore but it might bring me enough joy that I can break that rule this once. I try not to go there, but had I been healthy right now I'd have picked up all three and been so delighted by my new decorations, very personal to me and way more Canadian than I ever expected of myself. It was a delight to see the prints, but they acted as memento moris I didn't want to deal with today.

More Cat

I'm so cold all the time, I wish I had more cats

From the comments

James Petrosky:It's still 22 in here (73ish), but this cycle has been really hard on my ability to stay warm. Also to eat. I lost 2.5kg/5lbs in the last two weeks, and I'm terrified about that becoming a trend. My oncologist and nurses had some great ideas, though, so hopefully next cycle will be a bit easier

Curried Soul

I made a curry! The first real meal I've made in over a month. It's so incredibly hard to find the energy, but stop gap measures (eggs, canned food, etc.) only work so long.

From the comments

James Petrosky:It's extremely good, but I made a few grocery shopping errors, so I look forward to following things more closely in the future. https://www.wellplated.com/instant-pot-lentil-curry/

James Petrosky:I genuinely do try to take care of myself, but I'm tired all the time whether I do or don't. I generally don't feel the sensation of hunger, which complicates things way more than you'd expect. And I generally can't tolerate fast food anymore, which may not be great quality fold, but is Big Mac meal is 1000 easy calories I no longer can easily access.

James Petrosky:Since day one of treatment, my mass has been 115kg or within 2kg above it. I'm terrified of the prospect of losing any. That's a one way trip that leads to a skeletal look. I spent the last week worrying that it was finally my time, but now I'm not worried. I can still eat. I still want to eat. I can still get through this.

Cold and Comfort

Spent most of the day cold, knowing that I just needed to eat anything to solve the problem, but still finding everything unapatizing. I eventually made frozen dumplings, which helped.

From the comments

James Petrosky:This is what chemo recovery looks like for me now. Knowing what I need to do, but completely lacking the motivation to do anything about it.

James Petrosky:We're in cycle 5, 7 to go, and it's so much harder this time.

James Petrosky:By cycle 7 or 8, it'll be warming up, and that's going to be nice

James Petrosky:The heating loaf has been deployed

Eyebrow Update

Based on itching intensity, I'll soon have no hair remaining on my face. RIP my bushy intense eyebrows

2023 Year in Review

Gang! I not really a resolution person, but I found mine for 2023 and frankly I couldn't have done a better job in achieving it.

I spent a lot of time with family (the most since I moved out for university), hung around with Thomasin nearly continuously, except for when I got to visit my poodle pals, got to pet lots of friends' pets, saw so many water fowl (including swans this week ❤️), and had more meaningful interactions, in number and in depth, with all of you than I can count.

And I found out there's no more treatments for me, that I get a short amount of time and that's it, and somehow wasn't crushed under the weight. Mentally health wise, I'm still doing better than almost any time in my adult life.

In a year featuring the worst personal defeat I can imagine, I still did fantastic (given the situation at hand). And I'm taking that, and giving myself credit for a good resolution well kept.

New Year's Eve 2023

Happy New Year, from Lady Thomasin and her caretaker. May the coming trip around the sun bring you health, adventure and as many corgwen as you'd like to pet.

The rest of this is going to be pretty serious. Check out here and enjoy a cat in a hat she hates (she stole it and attacked it after this photo) if that isn't for you.

Based on my prognosis, and basic math (you can't do math on a prognosis, though), I am very likely to see another New Year's Eve, but only one more. Which is crushingly sad and upsetting, but being sad and upset isn't going to change that hard fact.

My resolution for my final year is to live deliberately and with enthusiasm.

I practice, I want to celebrate holidays, attend festivals, visit cool places, work through my long todo list, and hopefully, finally, get to meet a corgi. I'm not going to let missing things bother me too much, though, because my focus is on doing cool stuff, not dwelling on lost opportunity (dwelling on things is the way of madness, I'm glad I no longer have the impulse).

My January plans are lots of little adventures with friends I haven't seen in a few months. My first exciting plan is for my birthday/Groundhog's Day, I would love to see Wiarton Willie and partake in Wiarton's Groundhog's Day festival. I've literally wanted to do it since I was four or five (it's day 4 of my cycle, which is rough, but I drove to Sudbury on day 4 so it's not impossible, but we don't dwell on missed opportunities).

My secondary resolution is to try and take even more photos of myself, especially with other people, and record more videos. I'm really excited for this one, and I want to get more confident about doing both in public. Even now, in the situation I find myself in, self improvement and working though fears feels really nice, and I'd love to get that experience a few times.

Everything I've resolved is a natural extension of what I've been doing, so I'm confident I'll be able to hold to it, and excited to try. I hope everyone has similar hope and excitement for their coming year, and if anyone in Simcoe county can introduce me to a corgi I'd be greatdul for the rest of my life.

Chemo Cold Update

My apartment is a very comfortable 23C (73ish F), but I'm still wearing a sweater and a toque, and have three warm fluffy blankets on. Chemo cold sensitivity is extremely real

Hair Forecast

My head is very itchy, which is how I know I'll have very little hair by end of week

Breaded

I just kneeded some bread dough (Thomasin was off doing Important Cat Stuff aka yelling at songbirds) and that much effort genuinely pushed me past my limit

From the comments

James Petrosky:I'm having a go at making my own bread again. I enjoy working with dough a lot. This is the third consecutive time and I'm pretty happy about it.

Also this is my recipe, it's fantastic (as named) for sandwiches, but also as toast with eggs and as garlic bread, which covers 100% of my needs.

https://www.browneyedbaker.com/american-sandwich-bread/

Hair Deforestation Update

At this rate there will be no hair on my head by Decemberween (if not sooner)

Beard Deforestation Update

Can't tell what's happening with head top hair and body hair yet, but the beard is not going to survive too many weeks

From the comments

James Petrosky:I'm sad about this, but you can't wear a mask properly with as much beard as I currently have. And my immune system is already as bad as it's ever been, so it's just as well

Excitement and Mania

Something about recovering from a hypomanic episode that I can't remember being talked about is how it's hard to trust yourself again after.

I was making my plans for today over breakfast, and got excited that I think I'm going to finally make it to the end of a long chore chain today. And I had to stop and reflect whether this was a healthy, normal excitement, remnant mania (chores, even the completion of, don't usually cause me joy), or normal excitement retriggering an episode (no idea if this is possible, but I would take great pains to minimize risk).

This morning, based on the speed of my thoughts and the fact I've seen everything I've started through to the end, I'm confident it was normal and healthy. But I have to second guess every elevated state for at least another week because, for me, the real risk comes from having an episode and not knowing it's happening, damage control has so far been simple for me if I'm able to reflect, but that requires a tremendous amount of vigilance.

And it's really hard to enjoy moments of genuine excitement if you have to constantly second guess your own mental state.

From the comments

James Petrosky:The task I'm going to get to is eliminating a box I've kept on the floor since April 2020 as overflow pantry storage. My apartment is shit and has no storage, so this has been the only option until now. Today I will

-sort through some more records, freeing up some living room shelf space -sort through stem ware to see if anything is worth saving or giving away, placing remainder in opened up space in living room -move food into space where stemware was -possibly rearrange kitchen gadgets to fit in remaining food -fill entire trunk of car with two weeks of donations

Is it realistically that much? No, but I no longer have a lot of energy so it's pretty ambitious for me

James Petrosky:Moving anything in this places cascades down several other levels of bullshit, but getting rid of a perminant floor clutter is a major victory that makes all future tasks have fewer cascades. Especially because everything in today's cascade is either getting a real home or getting donated.