Month: September 2024

Treatment Progress Check: As I write this I’m on Day 2 of a 21-day cycle. Currently I have completed 1 out of 5 cycles. Friday’s IV treatment landed on me a little harder, and I felt a little weaker and more sensitive to cold & things. At least I know it gets easier from here.

Housekeeping

• The photos in today’s post were hand-selected by my daughter.

This Past Week

This was a week of mostly no pills and relative normalcy. In fact, in quieter moments it becomes easy to wonder if this cancer thing was all real and still happening. I’ll count that as a blessing.

Thursday I did a routine blood test and checkups with the nurse & doctor, who seemed to think things looked good for continuing the Xelox treatment. And so, on Friday, we did. Another two hours of IV chemo. This time I mostly watched the movie Tremors (1990) and had a nice bite of lunch midway through. Lori kept me company again, though she had to leave for a little while to be home for Cassidy at lunchtime.

For reasons, the site around the IV spot in my arm becomes extremely tender and sensitive near the end of the treatment and for a couple of days afterward. This meant that the tape they used hurt a lot to peel off, and I’m uncomfortable even putting my arm through the sleeve of a sweater at first. It’s Sunday as I write this and I’m still aware of the spot, though less so by degrees. I know from the first round that things will slowly get better and hopefully loop back around to where I was in my first paragraph — “is this even real?”

In an earlier post I mentioned the hiccups. On days two and three I take a pill called Dexamethasone to prevent nausea, which also appears to be the source of the hiccupping. I’ve been keeping count, and yesterday I had the hiccups 9 times. Today I’m at 8 but the day’s not over. I’d brought it up with my care team on Thursday and we discussed options; apparently there are more serious cases that last over nights and well into the rest of the week, and while backing off on the anti-nausea medication is an option, I then get to choose which side-effect I’d rather deal with.

I chose hiccups over nausea. The hope is that, like last time, once I’m out of Dexamethasone they’ll go away.

The thing about me and hiccups is: all my life I’ve hated them, to an irrational degree. When I was little, my brothers would do everything in their power to make me laugh so that I’d hiccup and interrupt myself, which made them laugh even harder. That I didn’t hate so much, but for some reason, as an adult, I came to strongly resent the interruption and loss of control, I think. I don’t like my body doing an annoying thing that I have no control over, and I had almost no patience to wait them out. I’d furiously guzzle water and hold my breath until they were gone, or get angrier by failing. I get how petty that sounds compared to other, more serious conditions. But it was me for a long time.

In the first cycle and in this one, I’ve actually come to surprise myself at how patient I’ve learned to be. They were very frustrating at first but I also quickly realized that my usual remedies had no effect. Nor did some of the other, slightly quackier ones suggested by one of Lori’s Google searches (sit with your knees close to your chest? okay sure???) . There really seems to be nothing for it but to wait them out. But I recognize that, in terms of what I can tolerate, they’re better than the alternative (feeling sick) and I do believe they’ll go away as soon as tomorrow.

And I think: I can do that! I can make it through a couple of days. Now, if I’m wrong and they persist, we’ll have a real problem and explore alternatives. But I’m learning that I have more a capacity to wait them out than I would’ve ever guessed beforehand.

Looking Ahead

Pills, pills & more pills. I have to remind myself not to look at the whole pack at once. Just take the ones in front of me. And like I said, hopefully I feel better by degrees each day. Sprinkle in some followup appointments with various doctors as we go.

Housekeeping

• I just wanted to say again how much I appreciate your comments. I don’t respond to many of them but I do read them all. I particularly enjoy anyone that compliments my “perfect grammar” (thanks Auntie Joyce 😂)

Treatment Progress Check: As I write this I’m on day 17 of a 21-day cycle. Currently I have completed 0 out of 5 cycles. This is a resting week for me, so I was able to stop taking the chemo pills last Thursday. That felt nice! Weirdly, I’ve had some more foot soreness this week than before, and there’s still the odd wave of nausea. But I got to finish the leftovers of my ice cream cake last night!

This Past Week

One way I’ve been sort of monitoring my brain fog and cognitive abilities is with those daily NYT Word Games. I fell out of touch with them for a long time, but this year my wife and I started exchanging our Wordle results again, and we’ve since branched into Connections and Strands. I really recommend doing something like this instead of making the news or social media the first thing you look at in the morning. Also, a fun thing to do is to include the Smug emoji 😏 when you’re sharing particularly good results.

I’ll pick on Connections as an example. If you’re not familiar, it’s a game where you get sixteen words which you must collect into four themed groups of four. The themes linking the words range from obvious to remarkably obscure. On the first day after my IV treatment, I remember sitting at the breakfast table and just staring at the words for ages. My brain wasn’t even starting to try and make links or even interpret meanings, they were just…symbols on a screen. But, given enough time (and a bit of coffee) I was able to pull together the answers for the puzzle. That honestly convinced me that I was okay to go to my office that day.

The office work that day was similar; slower, with lots of windup time needed and a re-centering “what was I doing again?” every time I’d get distracted. But I made it, and decided: if there’s a day when I can’t do the puzzles at breakfast, I’m going back to bed.

During the past week I had another appointment with my new counsellor as well. As before I won’t share every detail of our visit, but she did tell me something that I want to share. I had been talking about a deeply frustrating experience I’d had involving my kids, and she was trying to help me re-frame the experience so that next time I can try to see the good in it as well. (And maybe not get so mad.)

I suggested that I could try reminding myself that there are people who’d gladly take the challenges of raising kids if it meant the good things as well.

“We don’t need to bring other people into this,” she told me.

Okay, fine. I tried again. This situation is frustrating now, but there will probably come a day when they’ll be out of the house and I’ll miss having them around.

This next thing was the important bit for me: she told me to change the “but” to an “and”. She explained that we don’t have to try and throw away or dismiss the frustration and negative feelings we experience. We can hold two truths at the same time, where we acknowledge the challenge of the present moment while also finding something positive or worthwhile in it.

The situation is frustrating now, and there will probably come a day when they’ll be out of the house and I’ll miss having them around. See? One little word change. Now, all I have to do is remember it.

Looking Ahead

This Thursday I do some testing and checkups to see how the chemo landed on me, and then Friday we continue IV treatments and pills. As always I’m not looking forward to feeling worse again, but we gotta do it.

On the brighter side, CancerCare Manitoba reached out with an opportunity to take part in a Winnipeg Blue Bombers football game! I’ve agreed to be one of 15 people carrying the flag during our national anthem at a game in October. Afterward, we get to stay and watch the rest of the game. I’ve never seen them play in their new stadium, so I’m really looking forward to the experience! _{Hang on, I’m being handed a note here…apparently they’ve been in their current stadium since 2013, so it’s not exactly “new”. Well, alright then.}

Treatment Progress Check: I am on day 10 of a 21-day Xelox cycle. Currently I have completed 0 out of 5 cycles. Side-effect wise, the cold sensitivity has backed way off and I’m doing much better most days.

This Past Week

I take a lot of pills these days. Six at breakfast and six at dinner for my chemotherapy, not to mention anti-nausea, vitamins, and Immodium as needed. Every day, just looking at or interacting with the chemo pills makes my stomach turn, just a little, and I found I was really coming to resent them. Partly I think it’s understandable, because it’s hard to take medicine that you know will make you feel noticeably worse throughout your day. I decided I needed to try and focus on the long-term good, or this is bound to be an extremely long and needlessly difficult next few months.

So! A few mornings ago I decided to try something new. I looked down at the little bowl of pills I had set out for myself and I said, aloud, “thank you, pills.” I felt a bit silly doing it, but I tried to mean it, and I’m going to keep saying it or something in the neighbourhood. I gotta keep up the hope that these things are making me feel a bit worse for a good reason. But! Even trying for positive vibes, I still find I put off taking them a little bit every single time. Of course I get to them eventually, so maybe my pill-crastination is the next thing to work on.

Something else that Lori and I were discussing is whether or not all this — and I’m gesturing to like, everything that’s been happening to me since May — is easier or not with small children in our lives. It’s a little bit impossible to know. We only know the waters we’re swimming in right now, and can’t peer into other timelines…yet. So the discussion is purely academic, but I found, like the pills, I was stuck on the ways in which things were more difficult. Having to expend energy parenting when I want to rest, or (like I wrote about last time) having to endure squabbling when I feel my problems eclipse theirs.

In talking about it, though, Lori reminded me if they weren’t around we’d miss out on the good things too; moments of sweetness, light, and levity. My daughter’s artwork and encouraging notes. My son’s pure, gleeful laugh as I tickle him on the living room floor. The way that trying to enrich their days means I can’t just sit around and wallow in gloom; I get to get up and go outside, or do arts and crafts, or just see things from another perspective than my own, and get out of my own head for a minute.

Okay so yeah, “parent says kids are good, actually” isn’t headline news. Fortunately I’m not trying to convince anyone other than myself.

Looking Ahead

In a couple of days I get a weeklong break from the pills before diving into the next cycle, which I’m looking forward to. The break, not the cycle. Also, I got asked about a pretty neat opportunity that I won’t describe just yet because I need to make sure it can actually happen. (If not, I’ll mention it next time, anyway).

Housekeeping

A bunch of readers have let me know in different ways that they appreciate my honesty and vulnerability while writing about this journey I’m on. I’m flattered and glad that this is valuable to someone other than me! To be honest I’ve often wondered, while writing, whether I’m oversharing. And to be even more honest, I haven’t shared everything, because I do want to retain just a little bit of personal dignity and privacy! But I don’t see the point of writing this all out if I’m not able to be at least a bit Real with y’all. So, thanks for your feedback 🙂

This Past Week

Well, the big news was starting this new round of treatments on Thursday. The various combinations of chemotherapy drugs seem to be named after bosses from video games, and mine’s called XELOX¹, or CAPOX. This page has a pretty good rundown of the stuff I’ve heard from the medical professionals I’ve spoken to. I assumed the side effects would ramp up slowly again but nope, that cold sensitivity hit right away. If I drank room-temperature water I’d feel my throat start to constrict. If I washed my hands with cold water it felt like grabbing a metal railing in winter. And hiccups! I’ve had so many hiccups in the past couple of days. Stuff like that. It’s not intolerable (except the hiccups), but it just makes things…weird, for lack of a better term. Something to do with my nerves being all worked up from the treatments.

I was also able to get time with the CancerCare counsellor this week, which was good to do. We mainly had a kind of ‘getting to know you’ chat where I occasionally went off on tangents. I was glad for the outlet and I look forward to future visits.

I won’t go into a lot of detail about the session, but one thing I did admit to was the desire to Play the Cancer Card sometimes. By this I mean; I want to shut down complainers around me (*cough*mykids*cough*) when they’re being too noisy about problems that I deem to be minor. Like, a real sarcastic, “Oh, your monster truck is broken? That sounds ROUGH, but at least you don’t have CANCER”. Obviously this isn’t helpful — other people’s problems are real to them, and as the saying goes, just because I have a broken leg doesn’t mean you don’t have a sprained ankle, you know? It’s a difficult impulse to rein in.

I will say that I’m proud of one occasion where I was able to find common ground between our problems. Lori and I were going to a doctor’s appointment for me, and Cassidy wasn’t thrilled about where she was headed for childcare that day, so, she was complaining as we got ready to leave. My first impulse was to try and shut it down, but instead I found a place of empathy and said “You know what, this isn’t fun for any of us right now. Nobody wants to be doing what we’re doing.” And I think it helped! It helped me, anyway.

One More Thing

I got the ice cream cake the night before starting treatments again 😄

Looking Ahead

Like I’ve said, I’m currently doing five rounds of this Xelox. Right now I’m just learning the ups and downs of how these next few weeks will feel. Every day’s been a little different so far. But, for the most part — not worse.

1. “Xelox” sounds like something large and armored that you’d encounter in the Legend of Zelda, for instance ↩︎