Category: Uncategorized

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!! )}

Housekeeping

– I’ve done a quick recap post to cover the period of time that used to be on PostHope. It’s back dated to before my first post here. You can read it if you like. August Update: PostHope restored access to my first entries so they are on the site instead, and the recap post has been taken down. — NF

This Past Week

I completed my first round of chemotherapy and radiation treatments, and I got to ring the surprisingly heavy bell! I’m feeling great and everything will be fine forever.

Well, no. While I was pleased to be done with my daily radiation trips, I can’t quite exhale yet. I’m still dealing with the side effects (painful and bloody bathroom trips, mild nausea, fatigue) and I expect I will for another week or two before things start to heal. I can’t think about the future too much; my focus has come down to just getting through each day.

Which isn’t to say that my days are entirely miserable — in between the trouble I’m still able to find moments of joy and connection. Or even just normalcy, like having energy to fix something around the house. And! At the moment I write this it’s Sunday night, and I don’t have to ride to Winnipeg tomorrow, and I don’t have to take nasty pills tomorrow morning.

But, like I said, I can’t quite exhale. Yet.

Something else on my mind this week has been the very common way we talk about dealing with cancer: that it’s a Battle or a Fight. You might have noticed that I’ve tended to avoid talking about my own situation that way, choosing more often to say ‘journey’ or similar.

I’ve preferred ‘journey’ since well before my own diagnosis, after my mom died seven years ago. I didn’t like the implication that she was a ‘loser’ in the battle, or hadn’t ‘fought’ hard enough.

I think the language we use is shifting and a simple Google search turns up a lot of articles about this change, but Battling is still something I have had mentioned to me more than once. And like, no shame or judgement on those folks! If that is the metaphor that seems appropriate to you, go for it. Tell me to “kick cancer’s butt!” and I will happily accept the support. But I look at my day-to-day right now and think — this doesn’t feel like a Fight to me, it’s really just surviving.

And: I think the Fight and Battle imagery downplays the role of family, friends, and community in getting through something like this. I’m not the only person affected by this, and I’m not facing it alone, as a fighter might face an enemy.

Anyway. Sound off in the comments if you disagree, or don’t, because I don’t need that kind of drama in my life right now lol

Looking Ahead

From what I understand I’ll have until mid-September to recuperate, and then chemotherapy round 2 will begin. What will look like I don’t know. There may be more visits and testing between now and then as well. For the moment, I get to just be.

Fundraiser News

The Lemonade Stands for Hope fundraiser we participated in was a smashing success! Click here to read a little more and check out a photo.

This Week

When I started my run of radiation treatments, I was sad and upset on the first day (Monday) rather than the fourth day as I’d described last post. The drive into Winnipeg was good, but as soon as I stepped out of the car, a cloud came over my mood.

There was only one other person in the treatment waiting area. The TV in the corner burbled away. Trying to distract myself from my foul mood, I put in earbuds and started playing a video game. A moment later I heard a ‘clunk’ a few seats away, and when I glanced up, and elderly woman with a harp was turning down the volume on the TV.

Where had she come from? I didn’t think I’d been so immersed in my game that I’d miss someone moving near me with a large harp, of all things. But I wanted to hear, so I put the game and my earbuds away to listen.

She began to play something soft and pleasant, and reader, I don’t mind admitting to you: I started to cry. Eventually the other patient was called in, so for a few minutes it was just us. And I continued crying. The thought that kept repeating in my mind was: “This isn’t normal,” and because of that, maybe because of all the weirdness since May…I sobbed.

(if I’m being completely honest, my actual thought had more profanity in it)

Eventually I was called in. Before I left, I managed to thank the harp lady for her playing. I dried my eyes as I walked, and collected myself as I lay on the table being irradiated again. And of course, when I came back out, she was gone.

Make of this story what you will. I’m not going to try and make some grand point out of it. I just wanted to remember the Harp Lady. Thank you for making a difficult day more bearable.

The rest of the week continued as the others have. Rides to Winnipeg, chats, chemo pills, radiation. My potassium’s a little low, so I’m knocking back two bananas a day now. The real trouble has been– well, this is where things might get unpleasant to read, so you can skip to the next heading if you want.

So we knew going in that the radiation was going to irritate the areas it was hitting, and since the area is my rectum, it’s meant that in the past few days my bowel movements have become burningly painful. I can mitigate this with medicated wipes and warm baths, but those aren’t clearing away the irritation entirely, and I’ve been stopping to make odd faces and sounds of discomfort as I’m just moving around the house.

I’ll admit that I’m increasingly anxious about the next few weeks. I’ve come this far and I will keep going, but I can only hope things don’t get much worse.

Looking Ahead

🎵One week more!🎶
Once again, if you see people having a huge multinational celebration in, say Paris for instance, that’s a party for ME because on Friday I’ve completed my first round of treatments.

21/25 radiation treatments done and 168/200 chemotherapy pills taken. As 80’s new wave band Wang Chung once sang, “Let’s Go!”

We’re so excited by how much y’all showed up to support CancerCare MB! I’ve written a little update on the fundraising page:

Click here for the update! And, it’s not too late to give online!