Month: November 2024

Treatment Progress Check: Right now I’m nearly finished my 4th cycle, with the 5th and final IV treatment set for Tuesday. As always this will be followed by: a week of feeling kinda bad, then a week of feeling only a little bad, then a week of feeling pretty okay actually. And then I’ll be done, and hopefully feeling fine in time for Christmas! What a gift for me 🙂

First of all, thanks so much to everyone who goes out of their way to comment on the blog here or on the various social media platforms where I share this. As I’ve said before I may not respond to everything but I do read it all, and y’all were wonderfully supportive after my last post. Much love <3

What’s on my mind this week is: surgery. I haven’t talked a lot about my impending surgery because I still really can’t think about it too much. As in, I feel incapable of focusing on it for very long; either my brain slides off of topic and on to something easier, or I get overwhelmed by information I don’t need yet. But, to face facts for just a moment: I’ve been told I will be having a colostomy. The nature and location of this cancer is such that the operation will be permanent (or at least, permanent until medical science advances to the point of being able to reverse my situation somehow). This will also mark another change in the story I tell about myself, from A Guy, to A Guy With Cancer, and then A Guy With A Disability.

None of this is the end of the world. In fact I keep telling myself that it’s vastly preferable to the alternatives, and if it allows me to see my kids graduate then it is the best way forward. I know that people in very similar situations to my own have gone on to lead healthy, fulfilling lives. But it’s also a lot for me to process! And since we’ve been so focused on just doing the Next Thing in terms of treatments, I haven’t really had the space or need to do so. As of now I’ve done very little processing. The closest I’ve gotten is that in the past week or so I’ve started to form questions in my mind about what life will be like on the other side of surgery, but I’m still not to the point of being able to actually doing any research.

(Folks in the comments: this is not an invitation to share resources, blogs, etc. I will almost definitely not look at them.)

It’s gonna be okay. I’m stronger than I tend to think I am. It’s just…[long, dramatic sigh here]

What’s been good this week? I’ve been feeling really well and gotten to see some friends from out-of-town. The very bothersome tingling in my hands and feet has gotten much better. And I got a lovely vinyl LP of Star Trek themes from an internet Secret Santa exchange. Lastly, I’m relishing cool tapwater. I’m sure I’ve mentioned this, but in the days after IV treatments I cannot drink anything even a little cold, or my throat feels weird and starts to constrict. And hot water is not very refreshing. So when I go to the sink in the middle of the night for a quick drink, I stop and feel grateful for being able to just gulp it down.

Enjoy the little things, folks!

Treatment Progress Check: As I write this, I’m on day 12 of a 21-day treatment cycle. I’m in the 4th out of 5 cycles. I’ve only got pills for today and tomorrow, then I get some time off, and I’m feeling…pretty okay! This weekend I was able to put up Christmas decorations, go with my family through an interactive Nativity thing in the park, and Lori and I did a Christmas Shopping day in Winnipeg yesterday. I’ve got a short list of tasks to do during my Feel Good week coming up, and then it’s one more IV Chemo treatment and the side effects thereof. Still trying not to overdo things, but as always, I’m grateful to be up and about.

Something that I often think is that I’m doing this journal wrong. Nobody has told me this, of course, and there’s no concrete reason to think so, but I am indeed my own harshest critic and that hasn’t stopped just because of a little thing like having cancer. I may write as though I’m becoming enlightened, and perhaps that’s true in increments, but as a human being on planet earth there’s still a lot of work to do on myself.

Anyway. This journal. I ask myself, and sometimes Lori: “Is it too honest?” or “Is it not honest enough?” or “is my tone too serious? I’m not that serious” or “maybe the tone is too light? this is a difficult subject” and on, and on. I’ve rarely felt entirely happy that I’ve said exactly what I want to say, in exactly the way I want to say it. Thus, I tell myself, I’m doing it wrong. I think I must somehow be misrepresenting myself or my journey to my readers. I’ll be outed as a liar, a fraud. By whom? Don’t know. The Journal Police, I guess. Somebody. It isn’t a rational line of thinking, so the details aren’t always as important as the broad strokes.

When I read this back to myself, of course it sounds ridiculous. There isn’t an objectively correct way to journal one’s way through a cancer experience. There are tips, and guidelines, but I think I’ve got to make my peace with the idea that whatever I write is the thing that needed to be written at the time I wrote it. And, there’s no Journal Police, slowly building a case against me, waiting to pounce.

So, to my inner critic, I say, silence! Even if you think I’m doing it wrong, I’m still gonna do it.

Anyway, that’s all for now. Thanks so much for reading this, and to everybody who leaves lovely comments. You’re all doing your best out there in the world, I’m sure.

Treatment Progress Check: As I write this I’m on Day 4 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. I think I’ve gone and confused myself as to when a cycle is done or not, and I’m sorry if I’ve confused you too. I am currently in the midst of the 4th cycle. I’m getting a little better at understanding the rhythms of when I’ll feel good and when not; for instance, the first day after IV treatment is a Day where I Feel Great But It’s A Lie. For the first three cycles I’d feel really good on that second day but overdo things and my energy levels would crash the next day. This week I’ve seen it for what it is and made sure to take it very easy on myself that day — I really think it helped. It’s a little too bad that it’s taken this long to understand the rhythms, but right now it feels like most things in life change when you’ve just started to truly understand them.

There’s something I’ve been a little obsessed with for most of this journey, like since May. It’s the opening to the show Mad Men:

I haven’t actually watched the show in years and years, but many times, as I’d be lying in bed trying to sleep, the song or the image of the man falling would show up and play out. Over and over.

I’m not going to try and pretend this goes any deeper than you’d think, just by looking at it. The man has his life seemingly together, and then everything collapses and he falls seemingly endlessly. Sort of like having the rug pulled out from under you with a diagnosis. It makes sense that my mind would latch on to that as a way of visualising how I was feeling. (It also helps that the drums are great — but they’re not part of the metaphor, I don’t think)

I just note it because it’s interesting to me that my brain pulled this out of storage and chose to dwell on it, again, not having watched Mad Men in at least a decade.

This cycle I’ve been trying to focus on what I still have. Looking around the chemo treatment area during my last treatment really drove home what I can still be thankful for; hopefully not in a pitying way of the others, but like I said, as a reminder of what I’ve got going for me even now. I get to keep my hair, for instance! I feel slightly vain every time I say it, but my thick hair has always been a point of pride, and it would’ve just added more mental weight to the adjustment of treatments.

Also, I can move under my own power, and in a pinch, I could even drive myself to and from appointments. Not everybody can say that. I spend a pretty decent amount of time napping (especially in the past few days) but I’m not absolutely wiped out by sickness or fatigue. I even got to lead a song in church this morning and feel good about my voice. It was a bit challenging to move around — I do feel weak these days — but I’m pleased that my voice and mind are still in working order.

(At least — I think my mind works? Maybe this is all rambling nonsense lol)

A quick summary of the events ahead; I’m scheduled to do my last IV chemo treatment on December 3, taking pills until the 17th and being able to stop all this treatment stuff just in time for Christmas. Nice! A recent phone call with my surgeon indicated we’d do another round of imaging in mid-to-late January to see how the treatments did; however, regardless of how it looks I’m hearing that there’s still going to be a strong recommendation for surgery. They explained that imaging isn’t perfect and your *ahem* ‘back door’ is really not a place you want cancer to reoccur, so, the suggestion is likely to be that we throw the baby out with the proverbial bathwater.

That will create a whole ‘nother series of challenges that will keep me blogging well into the next year, I expect.

At least I won’t have to take a dozen chemotherapy pills daily!

Treatment Progress Check: As I write this I’m on Day 26 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. My next IV Chemo treatment day is set for Tuesday. As you’ll recall, I got extra days in this cycle because my platelet count was too low to continue. When I went for lab work on Thursday, I was told my platelet count was still low! But they reached out to my oncologist in Winnipeg and got the ‘all clear’. Well, not ‘all clear’ exactly, more like, ‘it’s probably fine???’ At least, that was the tone I felt. So on we go!

Personal Progress Check: As I write this, it is also: my birthday! I’m 42 years old today. When folks have asked my age in the last while I’ve already been thinking “42” and then correcting myself. So, mentally I feel prepared.

I don’t have a lot to say for myself this week. Having another week off was lovely, and I’ve been savouring cold drinks and ice cream treats before I have to put them away again. What else? I recently changed pharmacies due to communication issues with the last one, and the new pharmacy has been lovely so far. It’s also kind of incredible that my pills always say $0.00 on the tag when I leave with them; I’m taking a lot of medications during this time and they’re all paid for by the provincial government already. My tax dollars at work!

It’s also been just over six months since I got my diagnosis and started this journey. It’s been quick and not quick at the same time. Lori asked me today what I’d tell my past self, if I could, and I decided I’d say that every time you feel really bad, in your body, know that you’ll feel better eventually. Maybe that goes for my mind as well. But it’s the best advice I could come up with.

Anyway, be kind to yourself and others this week, and we’ll see you on the other side of treatment day.

Treatment Progress Check: As I write this I’m on Day 19 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. I’m in the ‘break’ part of the cycle where I don’t have to take pills and can just recuperate, so I consider this cycle to be complete. However! I was set to start a new one on Tuesday and that’s been pushed back a week because my blood platelet count was too low. Nothing I can do to get more, so I just have to wait before Feel Worse Day comes around again. Aw, nuts 😉

Fun fact! Platelets are the things in your blood responsible for clotting up a cut when you’re bleeding. So, don’t attack me with a knife right now or anything, okay?

My radiation doc is funny. I can’t remember, but I may have mentioned his bizarre confidence earlier on in this journal. I mention him now because we had a follow-up phone call with him recently, and the confidence is still there, and makes us chuckle. He’s a good doc, and trustworthy I think, but he just has this belief that his branch of oncology is the superior one, and we kinda love him for it.

One of the first things he tried to do was establish that whatever bad side effects I experienced were the result of the chemo pills I was also taking, not the radiation, obviously. I may even have laughed a little in the meeting before realizing he was serious, but in my mind I’m thinking the chemo docs are gonna say the same thing, but reversed.

During our phone call recently, he surprised us again by saying, with complete confidence, that the cancer was in fact already gone! The radiation had saved the day, and things were now totally fine in there. (This without any follow-up imaging of any kind, which may only be in January). Also, any negative side effects I was still experiencing were, again, due to other treatments. Then he wished me a Happy New Year and hung up. And we laughed again.

I just love how sure he is. He may or may not be right! But it’s funny, months after radiation has ended, to get a call saying “yeah, you’re probably fine now, no worries, bye” in quick succession when he really doesn’t have hard evidence to back that up. At least, we thought it was funny. It’s that or get frustrated about it, but nyeh, no thanks.

I’ve been feeling surprisingly good this week, and really enjoying the simple pleasure of a chilled glass of water, because right now it doesn’t make my nerves freak out and my throat close up. This new delay in my treatment schedule means I’ll also get to spend my birthday (one week from today, as I write this) in the Treatment Break Zone, and maybe I do get to have an ice cream cake on the day after all. I may not. I haven’t decided. I actually haven’t decided anything about what I want to do for my birthday. I left it all up in the air because I didn’t know where it would fall in my treatment schedule and how I would feel when it came around, so I didn’t want to make any elaborate plans that I might have to give up on.

Anyway, I made my elaborate plan last year and almost gave up on it like two separate times because of sheer anxiety and self-doubt, which was when I declared that even though the party ended up being a great time, I was done with birthday parties. So right now the plan is, and will continue to be, nothing.

It’s a little tough because my b-day, being a Sunday, is just two days from the next Feel Worse day when I get the fourth IV chemo treatment. It’s not often in your life that you get to know the exact day that you will feel bad, like if you could predict a nasty flu with utter certainty. I know I’m working on this ‘mindfulness’ and ‘being present’ thing but I think it’s going to be at least a little tricky to celebrate, knowing that some fresh suffering is coming two days later.

Okay, that last line sounded a little over-dramatic when I read it back to myself. The treatments are surely not the worst thing a body can be subjected to. But the point remains that I still dread them. They cast a shadow on the days leading up to them, and I think that’s probably normal.

In any case I’m resolving right now to try and notice, and fully enjoy, all the normal things I get to do while I’m in the Treatment Break Zone. Let me gently encourage y’all to notice and enjoy the good things in your days as well, even if it’s as simple as a refreshing glass of water.