Category: Uncategorized

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)}

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 ↩︎

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!! )}