Chemo potentially affects all your hair. You don't grasp how much your eyelashes do to keep stuff out of your eyes until they're gone.
James Petrosky: Had to pull off the road today (on the way to my chemo disconnect) because I was tearing up so bad. It happens a couple times a day, normally not when I'm driving, though.
If I refuse to get out of bed, maybe I can call in sick to chemo?
I did manage to get to chemo
I love talking most cancer stuff, but heck do I hate bowel movement stuff. So I'm going to talk about it so I can get over it.
I had a BM around five hours ago, and it still hurts enough that sitting is uncomfortable. My oncologist and nurses are aware, there's nothing to be done for now (asside from pain killers, which I did forget about until just now). This is just my life much of the time now (and has been for weeks).
The cancer in my prostate has spread to my rectum at the time of surgery, June 2023. I have no idea how related that is to my pain, but it certianly plays a role in some of my other plentiful BM problems. At least all the results I got today were neutral-positive.
James Petrosky: While I'm here, I've had diharea basically every day since I started chemo in November, probably for a month before but it's just not possible to remember all that. Imodium works, but it's expensive and you've still got to go sometime.
James Petrosky: In the hour after I woke up but before I got up, I had five BMs. They were all uncomfortable and hurt for the next ten minutes. This is the worst I've had, but is pretty normal for late in my chemo cycle these days. Early in the cycle is all chemo diahrea, which I think is as good as it gets now
Exciting new development: goosebumps so intense that they're nearly painful
James Petrosky: I'd be okay if it meant the geese would be my friends, but I don't think they'll care about my suffering
The take home chemo bottle line has a clamp, which I'm to use to shut off flow if the line becomes disconnected, and a pump that has to be taped against my skin, because temperature controls rate.
Back in the PICC days, holding the pump in place was pretty easy. My forearms aren't particularly sweaty, so the silicone tape the nurses use holds pretty well, and I had my burn mesh securing everything in place. In the sixteen cycles I had with the PICC, I never had problems with the pump.
I have to wear a shirt to protect the port and line from Thomasin, and my torso is naturally pretty sweaty. The tape is constantly coming unstuck. The burn mesh acted as a strain relief, and I have nothing like that now, so on top of less effective tape, everything gets pulled out of place regularly. I should be fixing it every few hours, to ensure I receive all my medicine, but I make do when I wake up, or when I notice a problem.
The port is better in every way, much better for quality of life, but more annoying for actually receiving treatment. Which is pretty silly.
I leave for chemo at 1230 (4.5 hours from now). I have several chores to complete and two meals to eat and all I want to do is kitty cat nap time.
James Petrosky: Anyways, no matter how hard I procrastinate I need to clean the litter box, it's much, much safer for me to do it when my immune system is stronger rather than tomorrow, when I'll be at least lightly immunocompromised.
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.
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.
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.
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)
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.
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
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
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.
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.
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.
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.
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.
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).
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.
I'm so cold all the time, I wish I had more cats
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
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.
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.
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.
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
Based on itching intensity, I'll soon have no hair remaining on my face. RIP my bushy intense eyebrows
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.