Month: October 2024

Treatment Progress Check: As I write this I’m on Day 12 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. Things generally tend to improve once I’m at least a week out from the IV treatment, although they can still go up-and-down on a daily basis. Like for instance, Friday I felt good enough to go with Lori to The Show That Goes Wrong at the Royal Manitoba Theatre Centre (and we had a great time). Then yesterday I felt pretty wiped out again, and making a short trip to the grocery store was a challenge.

A big thanks to everyone who reached out in the last week to encourage me and us! It means a lot to have you folks in our lives 🙂

This past week I joined a Mindfulness practice course put out by CancerCare Manitoba. I have some experience with mindfulness meditation in the past, but I thought the refresher would be good. Also, doing it all through the lens of being a cancer patient (or support person) would perhaps be helpful and feel more relevant now. We meet Tuesdays via Zoom, and started out doing your usual things like a body scan, holding a raisin in your mouth, and some breakout rooms of conversation with other course participants.

We were asked to discuss amongst ourselves why we’d chosen to take the course, and I chose to share something that had come up in my counselling sessions as well; I’m not sure I’ve let go of being “pre-cancer Nathan” again. Intellectually I know things are different, that time marches on and we can’t go back, but some part of me is hoping against hope that everything will go back to ‘normal’ and I’ll carry on being the guy I was at the beginning of the year. I get pretty emotional when I think hard about how that…won’t really be possible, and so I know there’s more to unpack there but I haven’t really taken the time to do it.

I thought a Mindfulness practice — a course about practices that help ground you in the present moment and experience things as they are — would help me not to dwell on a version of me that no longer exists. We’ll see if that turns out to be the case.

Two other things I noted from the Mindfulness session; for those who’ve never done a practice like this, the instructor helpfully clarified that this is not meant to be a ‘spiritual’ practice that changes or replaces any beliefs we currently have. I think that’s still a fear people have; the word ‘meditation’ can have some connotations for folks that put them on edge. In my experience it’s more about slowing down, and finding a restful place to check in with yourself and what you’re currently feeling, both physically or emotionally.

The other thing I found interesting was that the instructor told us not to ‘fix’ or ‘help’ each other. We’re more than welcome to share things that have worked for us, but we’re not welcome to try and foist those on to other people, as we’re all coming from different treatments, experiences, diagnoses, and backgrounds. As somebody who still struggles to just ‘listen’ to another’s problems without trying to jump in with a solution, this was a valuable reminder.

On a more practical note, my hands and feet were really tinglin’ this week as the weather got colder. It turns out my gloves are not adequate, and I’m probably going to have to wear one of those face/neck warmers soon, even though we’re not below zero yet. At least I can drink things that aren’t hot these days — warm water is…not very refreshing.

Everybody hang in there this week!

Treatment Progress Check: As I write this I’m on Day 4 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. At this moment I have a bit of a head cold, which is making the first week of post-IV-treatment a bit tougher than it really needs to be. I’m still quite cold-sensitive, and as another fun side effect I’ve lost a lot of my ability to taste food. Combined with a general diminishing of appetite, I find myself in a real “food is fuel” place where I’m just sort of…putting things into my body because I know I need the energy, and not because I enjoy it. Which is sad! I like food! I want to enjoy it!

I think I struck the work/life balance this week a little better than before, which was good. However this weekend I’m really suffering with this cold thing I mentioned, on top of trying to keep the kids enriched while Lori works. I’ll get through this, I know it.

I didn’t have a lot from this week to talk about in terms of my personal journey, so I decided it was time to share my cancer journey playlist. It started on Spotify as something I’ve been slowly adding songs to since basically the beginning of this in May, and while most of them may be obvious choices, some of them are maybe not, and I wanted to highlight a few entries. Maybe it’s something you can find a bit of inspiration from as well.

Note: If you don’t have Spotify you can try this YouTube alternative I made just for you 🙂

I invited Lori to listen to it early on and one song in particular that has stood out for both of us is called Look At The Sky by Porter Robinson. I know the lyrics are about being creative and finding your spark again, but I can’t tell you how many times I’ve looked up while outside and said, or sang: “Look at the sky, I’m still here / I’ll be alive next year”. This has become a meaningful…prayer? Request? Mantra? Statement of intent? Something along those lines.

Most of the rest of the songs are about acceptance and meeting ones circumstances as they are, about not being afraid to ask for help, and about knowing that there can be something good beyond your present experience. I’ll highlight two others:

• Times Like These by Jack Johnson – this one’s notable because the radiation technicians started playing it as one of my treatments started, and while I still don’t like to think about that machine, it was a lovely song and reminder that “what will be, will be” as I went through those treatments. I’m not the first person to encounter hardship and I won’t be the last.
• All Together Now by OK Go – this was actually written and recorded while the band sheltered-in-place during that global pandemic we had a few years back. So a lot of the lyrics are about who we plan to be on the other side of a life interruption like this. Our best selves? Our worst? The line that strikes me each time goes “Nothing changes until one day it does / and there’s no going back”, which is, you know. Pretty relevant.

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An unexpected side effect of something I’ve been putting in my body — who knows which thing exactly — is that in the past few days my dreams have become quite vivid. Not scary, just very real-to-me and difficult to separate from reality on waking. For instance, just this afternoon, while napping, I dreamt of stumbling on to a huge supply of free canned mushrooms. I was excited because I felt it’d be something we would use in our household. Even as I woke from my sleep I couldn’t wait for Lori to get home so I could show her how good they could be, and it took a long time of lying awake to realize they didn’t exist. I could even picture the packaging! I had been chopping them to saute some!

There was a lot more to the dream but the point is that it felt very real and natural in a way that I’m not accustomed to outside of being ill. Actually, my fever dreams are a lot less coherent and more repetitive than these. I guess we’ll see if they back off, or if I can trace it to something in particular over time.

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The last few days haven’t been easy. None of this really is, but I don’t need to belabor the point. I’m technically over the halfway mark of this treatment plan but the rest feels uphill from here. If you can spare a prayer or vibes or whatever, please; ask for a bit of hope for me and for us. I’d really appreciate it.

Treatment Progress Check: As I write this I’m on Day 22 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. At this moment I’m on the ‘medication break’ portion of my cycle, and actually I get a few extra days of no meds because I had my next treatment postponed until this coming Tuesday. Aside from one or two symptoms of a personal nature I’m feeling pretty normal these days — feet don’t really hurt, and I can have ice cream for the moment. Which I did today 🙂

Let’s start with the elephant in the room — yes, I missed last week’s update. It turns out that if I don’t sit down to write on the weekend, I will not have the time or brain-space to do it during the week, not really. So please rest assured that it was not because my symptoms had taken a sudden turn for the worse! It was actually that things were pretty good and I wasn’t sure what to write about.

There was one thing to write about, and then another one cropped up yesterday, so let’s talk about those things!

Some time ago I wrote about trying to thank my pills because I resented taking them so much. I was trying to turn my attitude around and see the good in what they were doing. Well, that worked for a while, and then it slowly started to feel rote. A friend of my wife’s heard about this and made a new suggestion; when Lori conveyed it to me, I got emotional and said “yes, that’s it, let’s try that.”

The suggestion was this: with each pill, name somebody that I’m taking it for. “This one is for Cassidy”, so that I can stay in her life longer. “This one is for Avery,” same thing. And so on. Each pill gets a new focus on the reason I’m taking them, and I have to say, even though it came late in my treatment cycle it felt really effective and I’m going to start again on Tuesday.

The only minor issue was running out of ideas on the sixth pill, so the first time I tried this exercise, I dedicated that pill to my enemies. I figured, surviving out of spite is a good reason too. After all, living well is the best revenge!

(Editor’s note: I am genuinely unaware of having any real enemies)

Now let’s talk about being a flag bearer at the Winnipeg Blue Bombers game!

We drove to Winnipeg and took a shuttle bus to the stadium. I was impressed by the place, having never even been near it. I was told to take the Media entrance, and we confused some security personnel because we were the first ones there. After some walkie-talkie calls and a bit of “stand here, no wait, over here” they got it sorted and Lori headed off to find her own seats as the other flag bearers and our minder arrived. There were about 18 of us, mostly women. We were gathered and ushered down into the bowels of the building, past one of the main entrances to the field.

We ended up in a small area off a hallway, where some highly experienced volunteers dumped a lot of information on us about how the flag ceremony is supposed to go. If I recall correctly, the flag is 30′ x 60′ and cost around $5,000. As such they were very keen that we don’t let it drag or expose it to rain. There are labelled handles all the way around the outside and we were assigned spots, and taught the particular way to hold the flag before unfurling it.

Myself, another cancer patient and two volunteers from CancerCare Manitoba were placed at one end of the flag, so we were sort of the head of the dragon as we marched the flag back through the hallways, past the big entrance to the field, and toward a smaller one. We stopped and waited in order to let the Toronto Argonauts pass very nearby and get to their change rooms; one staff member informed us, being the closest people to the passing Argos, of what our dialog options were:

• “Hi”
• “Have a good game”
• [say nothing]

Mostly the players only gave us passing glances. Certainly nobody tried to engage with us, even though I did my best to smile and kinda wave at a few. What! They’re just a buncha (pretty big) guys.

Once the Argos had passed by we marched to the smaller entrance to the field and waited for some pre-game entertainment to wrap up before we headed out. Some kids excitedly yelled to ask if that was The Flag and if they could carry it, to which I cheerfully shouted back “No! I am!”

From there we got to head onto the field, and at last we were able to pull our handles and pull the flag apart to spread it out. Fortunately the wind was calm and it was not too difficult. Then we hung out there and sang the anthem along with the designated singer, and before I knew it we were closing up shop and heading back the way we came. I was surprised at how soft the turf was, actually? Overall, what seemed complicated and very front-loaded with information was actually not too bad at all; just follow the staffers!

It was a thrilling experience and I was beaming the entire time. As always, we wish the circumstances surrounding an experience like this were better, but I’m so grateful to be healthy enough to seize a unique and fun opportunity like this.

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Tuesday is Feel Worse day, come round again. I want to hold on to these extra days of rest and remember that I won’t feel bad forever. And, I don’t want to take the ‘good’ days (like yesterday) for granted either.

Treatment Progress Check: As I write this I’m on Day 11 of a 21-day cycle. Currently I have completed 1 out of 5 cycles. Last week I wrote that I knew things got easier from the treatment onward, but my body’s been a bit slower to recover this time. For instance, in the first cycle, the cold sensitivity mostly went away after a week. Yesterday, 10 days in, handling eggs when making breakfast still feels like I’m holding ice cubes. Still, I’m getting through the days.

My keywords this past week have been “slow down”.

This is a weird thing for me, because I’ve never considered myself a particularly “fast” or “industrious” person. But in big ways and small I’ve been noticing the way I push myself to do as much as before, or at least as much as I possibly can in that moment, before feeling like I’m ‘allowed’ to take a break and rest. I want to walk as fast as I normally walk, but my feet are getting much more tender, and my body is working through some pretty serious medication, so I have to remind myself that I can’t. Yeah, sure, I want to rest, but first there’s just this quick thing to do in the house, and that thing, and oh Lori would appreciate it if I just did that thing, and so on. I want to spend as much time in the office as I normally did, but is there really any point to sitting at my desk with my head in my hands, unable to work up the resolve to start a task?

And like I said, it’s surprising to see myself in this light! I look at people in my life that seem to be constantly in motion and unable to just sit and be, and I tell myself “hah, couldn’t be me!” But it turns out it’s more complicated than that, and there are ways I push myself that I hardly register.

So this past weekend, while Lori was away at her work and it was just me and the kiddos, I said to myself: you are going to move at a slower pace. Physically and mentally, slow down. Set your expectations of yourself low, and be happy if you hit them, but fine if you don’t. Now I’m about to brag that I accomplished a “surprising amount regardless!” but now that I write it out it seems like I’m still not quite taking the right lesson away from my experiment.

As with many things I’ve written about in this blog, it’s something I get to keep in mind and keep working on.

On a much less serious note, I recently had to change the notification sound on the medication reminder app I’m using. The problem was that, twice a day, the default sound was a little flute melody that happened to sound just like the opening notes of Welcome to the Black Parade by the band My Chemical Romance. After a week or so, my family was becoming very tired of me singing 🎵When I was / a YOUNG boy / my FAther 🎶 at breakfast and dinner.

_{(Drop a note in the comments if you felt compelled to go listen to the song again after reading this)}