Month: August 2024

This Past Week

Well, the big news is that we met with the chemotherapy doctor again, and learned about part two of the chemo treatments. There are five three-week cycles planned, taking me from this Thursday until about the middle of December. Each cycle will start with about 2.5 hours of IV chemo at our local hospital, alongside twice-daily pills of the same kind I was taking during my first treatment. I do the pills for two weeks and then the third week is a break before we go again.

Common side effects are hand/foot dryness and soreness (again), diarrhea (again), and nausea (again). A new thing is that over time I may develop an extreme sensitivity to cold — something about my nerve endings being all worked up — and I’ll have to avoid cold foods and touching cold things. Easy to do, heading into a Manitoba winter and all. No problem! The guidelines even mention wearing gloves to get food out of the fridge or freezer. Definitely no cold water, as it may cause throat spasms.

On the plus side, I’m still not likely to lose my hair.

If the side effects become too harsh we have options to move to an easier form of chemo that unfortunately does mean more time in hospital, and there’s also some flexibility with the timeline.

I’ve written before about trying to remain optimistic, and meet the challenges presented to me with calm determination. This time, I’m really not doing so well with that. I’ve been pretty open with folks in my life that I don’t want to do this. I’m going to, of course. Maybe as I settle into this new routine for the next three months I’ll find some measure of inner calm and strength. But right now I’m harrumphing and crossing my arms and pouting like a child. “Don’ wanna!” And, honestly, everyone I’ve expressed this to has said “You know, that’s understandable,” which is actually kind of nice.

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It hasn’t helped that the week surrounding this appointment and new schedule has been very difficult in our house. I mentioned last time that Avery was sick — well, later that night, after finishing my post, Lori and I both got walloped by the same bug and spent Monday lying around feeling sorry for ourselves. (Blessedly, we were able to find places for the kids to go for the day).

We’ve spent the rest of the week playing catch-up on sleep and energy, and then on Wednesday we absorb a big emotional impact. I mean, I knew this second round of treatment was coming, but actually getting a schedule and going over side effects makes it more real somehow. I spent much of the week in a low place. It’s all been a lot! Fortunately this weekend has gone pretty well, and I’ve made some good memories with both of the kiddos.

Looking Ahead

Well, like I said, I’m starting the new treatment this Thursday. I’m also awaiting a followup call from the radiation doctor in a couple of weeks. Also, since I probably won’t be able to have an ice cream cake for my birthday in November, I’m thinking of getting one this week to celebrate just a little early.

This Past Week…

…was relatively uneventful. I worked at my job, I did some family stuff. My side effects are sort of holding steady now; not really improving anymore. Bathroom trips are unpleasant and uncomfortable but mostly not painful anymore, which I’ll certainly take. And! The frequency of my trips has backed off somewhat — I was able to go for a decent-length walk with Cassidy and our dog yesterday.

My little boy was sick starting Friday night and throughout Saturday, throwing up everything he had, and then some. He’s doing better today, but the initial going was intensely stressful, even with Lori here to share the load. As I realized when emailing back and forth with a cousin (hi Joel!), a big part of my frustration and stress comes from the repeating wish that things could just…stop happening for a minute. But underneath that is the belief that I’m the only one that’s allowed to be sick right now. In the cold light of day I know that’s not reasonable to expect, or fair to my family. I wish I could have caught the thought sooner. Maybe the next Event will be easier to handle.

One sort of interesting wrinkle this week was a phone call from my mother’s cousin, a medical doctor with a strong interest in something called Lynch Syndrome. This is a genetic condition that increases the chances of getting certain kinds of cancer, and he’s been working with another doctor on tracing it specifically within my family tree on my mother’s side. He said I’d probably get a genetic workup as part of my treatments, and with my consent they were quite interested to get the results for their research. I said yes, of course. If I can contribute to something that helps early detection and removal in somebody else, I’m all for it. So! If anything more comes of this I’ll probably put it here.

One last quick thing, and it might seem silly, and it is! But I wanted to note it here. Today is the 19th anniversary of They’re Taking The Hobbits To Isengard.

After showing my kids and jamming out, I went into the comments on YouTube and noticed a lot of people saying RIP to the original creator Erwin Beekveld. On digging further it turned out he died of cancer two years ago. Reader, I don’t mind telling you this was something of a gut punch. An unwelcome surprise, one that made me tear up for a moment.

Again, I don’t have a wider point to make here, I just wanted to note this. And say that it won’t be me.

Looking Ahead

My counselling session was postponed, so not much to tell there, yet.

More unnerving is the appointment with my chemotherapy doc this Wednesday. I’ve had almost a month to recuperate from the first round of treatments, but I feel like I’m not physically or emotionally ready to feel worse again.

Housekeeping

• PostHope finally came through with an explanation, and the ability to access my old posts! I’ve copy-pasted and back-dated them here, so the complete journal is now in one place. You can read their side of the story, if you’re curious.
• My post about the Harp Lady made it all the way to the actual Harp Lady, and we exchanged some pleasant emails 😊

This Past Week

I’ve done almost the entire week without painkillers on board! Bathroom trips, while certainly not comfortable, are at least not burningly painful anymore. The side effects are diminishing; things are healing. An answer to prayer. My mental health has been reasonably well also, though I did make an appointment to chat with a counselor in the coming week. I’ve been working more full days at my office job and a few nice people from church told me I look “great”. So nice!

This week I was thinking about something I heard more than once in the earlier days of this journey; that before long I’d notice who my true friends were. You’ve probably heard conventional wisdom like this as well. In a crisis, they say, the fairweather people in your life will melt away and leave you alone. It’s the real ones that step up to help.

Well. If you’re reading this and you’re worried or feeling guilty, don’t. I’ve reflected and realized that I have absolutely no idea who those fairweather people are for me. Either I’m oblivious, or everyone I know is wonderful, which is what I’m choosing to believe. But, honestly, it takes a lot of mental energy to create and maintain a list of people you feel could have ‘done more’, and I’m not interested in doing it.

There was a bit more to this thought but it got into heavy low-self-esteem stuff that starts well before my diagnosis, and I’m not ready to unpack all of that, here. Maybe that’s what the counselor will be for!

Looking Ahead

Almost the same as last week; we’re in the kind-of-nice, kind-of-difficult Between Space. It’s kind of nice not to have appointments and schedules to keep and weird procedures to do. But the difficult part is the waiting, again. We want to act normal, and we’ve had good times where everything felt normal again, but underneath, it isn’t.

This is a rabbit trail, and it might sound pedantic, so I hope I’m not in the wrong here. Here goes. So, I get up at least twice a night to use the bathroom. Sometimes I accidentally wake my wife, who would ask if I was okay. The question kind of bothered me, because as I explained one morning; in the moment yes, sure, I’m all right, go back to sleep. But the circumstances, the reasons I’m awake? No, I am not okay. None of this is okay. But she’s being concerned, and I don’t want to be mean and throw her concern back in her face, so I don’t. Once we talked it over she changed the question to “do you need help?” which I think is much better.

Anyway, that’s the rabbit trail. I’m okay, but also not okay at all. As I tell everybody, I’m hanging in there. (yes, like that kitten)

This Past Week

As expected, the side effects continued at more-or-less the same levels. In between I was able to spend some full days at my job. I will say that last night and today my side effects, by which I mean my trips to the bathroom, have been slightly easier than before. I’m trying to be patient and not over-eager for improvement, without sliding into outright pessimism. I’m not always doing that balance well.

On that note, Friday night and Saturday morning were actually a very low point, emotionally. So far in this journey I’ve maintained a fairly healthy optimism for the most part. I think that comes across in my writing here and interactions with people. I’ve had sad and low moments of course, but what I experienced the other day was enough to convince me to reach out for counselling this week; it was real hopelessness and anger, snapping at my family while simultaneously feeling guilty and burdensome. It lifted over the course of the day yesterday, thank God, but I think I’ll want some help strengthening my mind before it happens again. Especially before surgery and a potentially major overhaul of my self-image and capabilities.

Something I heard this week was about being open to trying things, without letting your own perfectionism get in the way. This is particularly timely advice when, as I mentioned, I’m approaching probable surgery and a change to what I’m capable of and what life looks like for me. This idea came from a really helpful conversation I heard this last week, suggested by my lovely wife, who is a fan of Kate Bowler’s writing. Kate has had immense struggles with her own cancer diagnosis and health journey, and seems like a pretty wise and compassionate person generally.

She also talks about the mistake of using bucket lists and goal lists to ‘solve’ the problem of a limited life, as though we ourselves, finite that we are, are problems to be solved. She suggests trying to find the richness and beauty of the moments we exist in as an antidote to feeling “claustrophobic” in bodies that decay and break down over time. That isn’t to say we should abandon goals and hobbies, but what I heard was not to aggressively pursue these things as though they’ll fix everything. I’ve commented to Lori that in the waiting between my first diagnosis and the start of treatments we were noticing a lot of small moments of joy, love, and connection within our families and lives; I think I’ve gotten away from that in the past weeks and it’s probably worth trying to notice those again.

One other thing that I wanted to note in this entry: I’ve already found that some things have become too closely associated with my radiation treatments, and now they turn my stomach a little just to be near them. These include:

• The little water bottle that I drank 325ml from, before every treatment. My son is fascinated by it so I’ve given it to him, because I realized I never want to use it again.
• The Fun Socks that I wore are definitely not the first ones I’m reaching for in the drawer anymore.
• I was listening to some music, and in a song I’ve listened to dozens of times, a buzzing tone midway through reminded me too much of the radiation machine and I had to immediately skip to the next tune.

Maybe this is what trauma is, I don’t know.

Looking Ahead

I have a follow-up with the chemotherapy doctor in two weeks, presumably to discuss how things went and what to expect in Chemo Part Two. And, I’ll probably write about how counselling goes. Meantime, I’m just tryna have some normal days and watch my comfort shows while never straying very far from a bathroom.

^{(if you’re wondering, my current top two comfort shows are Star Trek: The Next Generation and an anime about volleyball called Haikyuu!! )}