Category: Uncategorized

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!

Housekeeping

• There may only be two weeks left in this course of treatments but I’ve added a calendar thing to the right sidebar. If you’re driving and you have questions or need clarifications, feel free to reach out!
• PostHope (the site where I had started journaling, which shut down unexpectedly) has been updating their farewell page to say backups of our journals should be available soon! When they are, I’ll repost them here.

This Week

The first treatment of the week was set for a very early time in the morning, so rather than get up even earlier, we decided to drive in the night before and stay at a nearby hotel. Very nearby — it’s connected to the hospital complex and walking from my room to the radiation therapy area took less than ten minutes. We found a place elsewhere for my daughter Cassidy to stay the night, because she found out the hotel didn’t have a pool and immediately lost all interest in coming along. Priorities 😂

This week I also crossed the halfway point for my treatments! “It’s all downhill from here,” said Lori, before we both realized there must be a better way to phrase that. The side effects of the chemo/radiation have still been surprisingly manageable, and between treatments I’ve been up and about much more than we expected by this point. This is what I’m dealing with, and I do hope it doesn’t get too graphic:

• Low-level nausea most days, for which I take tiny orange pills that help.
• Fatigue, as mentioned in the previous post. This one is worst in the evenings, when I feel I could just lie down wherever I am in the house and have a nap. Kitchen floor? No problem.
• The radiation is known to soften the contents of your bowels, and there have been a few days where Imodium has become very necessary to take. Things have also become itchy and uncomfortable the rest of the time.

Overall I’m upright and generally chatty while I drive back and forth to Winnipeg with people! What’s my secret? I don’t know! If I put up a pie chart of contributing factors, it would contain Diet & Nutrition, which a wonderful dietitian from my church helped me get a strong start on even before treatments began. It would also contain Natural Defenses, I suppose. Maybe Positive Mental Attitude? But I believe a big chunk would be The Power of Prayer; so many folks have let us know that I and my family are on their minds. I wouldn’t know what exactly the proportions would be, and I wish I could sell my One Weird Trick that Doctors Hate and make a million bucks.

(My One Weird Trick is showing up on time to scheduled appointments and following recommendations by experts, I guess.)

Because things seem to be going well and we’ve crossed the halfway mark, it can be easy for to start thinking that if I just get through the next couple of weeks, this whole crazy experience will be over and things can all go back to normal. I’m trying to remind myself, not unkindly, that this is still a marathon, not a sprint. Once this treatment course is done I’ll get a few weeks to recover — side effects are supposed to be at their worst about 10 days after treatment ends — and then there’s likely to be even more chemotherapy. Months of it. And then of course, probably surgery and the whole recovery/adjustment period afterward.

There’s a lot left to do. But, that doesn’t mean we won’t celebrate the milestones and achievements and good things along the way. I’ve seen that bell in the radiation treatment room, and I’m gonna be glad when it’s my turn to ring it.

Looking Ahead:

It’s a week of 5 treatments, then my final week of 4. I’ve noticed that the 4th treatment in a row is always my toughest mentally. The fourth day is the one where I start out grumpy, crossing my arms and muttering “this sucks and I don’t wanna”…and then going anyway.

16 of 25 radiation treatments and 128 of 200 pills down. As The Ramones once sang, “Hey! Ho! Let’s Go!”

Housekeeping

• I’ve restored one older post that I still had a draft copy of, and I’m working on a quick recap post that will sum up the other journal entries that I lost.
• I’m also planning to put a calendar page back in so folks can glance over the upcoming treatment list, and double-check times if they signed up for something.

This Week

I had a nice long Canada Day weekend away from treatments and pills. Any buildup of side effects I was feeling seemed to go away — aside from being tired. Assume at any given moment I am at least Kind Of Tired, all the way up to If I Stop Moving This Will Be Where I Sleep Tonight.

I continue to have great chats with wonderful drivers, getting to know some folks much more than I might have otherwise. I’ve complained already about the monotony of the drive, but it turns out there are plenty of little things to notice along the way. Like a creek being full when it was previously empty, or a graffiti tag on a mural where there hadn’t been one the day before. Or my personal favourite from the last week, a large drone hovering over a field and spraying the crops. Felt like we’d hopped forward in time.

The nausea slowly ramped up over the course of the week again but like other side effects it’s still at very manageable levels. I met a Nurse Practitioner during a midweek checkup who called me a “superstar” for the way my body was handling this whole thing so far.

That felt nice! However, I noticed that rather than experience gratitude in that moment, my mind went forward to the next week and immediately said “sure it’s good now, but it’ll get way worse before this is through.” I even said something like that out loud. And the NP cheerfully reminded me: there’s no reason to assume that! Why not be optimistic?

Which I’ve been rolling around in my mind, because I always thought I WAS an optimist! Unfortunately I’ve also noticed myself idly wondering if the treatments can really be working because, wouldn’t I be feeling worse if they were? Does the fact that I’m coping well mean that things aren’t progressing as they should? I know that isn’t logical, don’t worry. These are all just thoughts I’ve noticed.

Anyway, let me say for the record that I’m glad I’m doing as well as I am. I’m grateful. Thank you again to everyone who’s prayed or sent good vibes our way. We need them.

Looking Ahead

The last week was only 4 days of treatment, and this week we kick a 5-day week off with a Monday morning treatment at 7:35 a.m. Ouch.

11/25 radiation treatments, and 88/200 pills down. I’ll cross the halfway mark this week! As Mario (of the Nintendo Marios) is so fond of saying, “Let’s-a go!”

Today, my first round of treatments officially began. I took the first dose of chemotherapy medication after breakfast (4 pills down, 196 to go) and we got ready to head back to the CancerCare building near the Health Sciences Centre in Winnipeg. This will be where I go every weekday for the next month-and-a-bit.*

Once there, I did a quick check-in, a brief wait, and before I knew it I was on their table while they used my tattoos to align me with the lasers. The staff are efficient but pleasant and they complimented my socks, which had Game Boys and Tetris blocks on them and were indeed pretty great. Next, they left the room but monitored me through cameras and microphones in case I need anything, but in general I’m not to move for the next few minutes.

The machine buzzed and slowly rotated around me, and as promised, I didn’t feel a thing. Some music by Jack Johnson floated in from a CD player elsewhere in the room — a little out of place in a place of high tech and serious diagnoses, but still nice. And then: we were done!

I went back outside into the bright day, and then we were off to grab lunch and pick up my brother for a ride back to Winkler. We talked about cats and computers. After supper I took my second dose of chemo meds.

I feel almost no different, as expected. I know the effects of these treatments are cumulative and things will probably get worse before they get better. I’ve had some dark and anxious times in the past few weeks, but today was actually a good day and I felt cheerful and optimistic throughout. I had several messages of support this morning, and I know people are praying for us and thinking of us often. I’ve said it before and I’ll say it again: thank you all.

Just twenty-four more radiation treatments and a hundred and ninety-two pills to go!

*The opening ceremonies for the 2024 Summer Olympics happen to take place on the same day as my treatments end; I am going to pretend they are celebrating in my honour.

This week, we went on a road trip. Earlier this year we had been planning a trip to an indoor water park / resort in Minneapolis, called Great Wolf Lodge. When I got my diagnosis it seemed like we wouldn’t be able to go anymore, but suddenly we had a couple of weeks with no tests or consultations on the calendar. With the support and encouragement of doctors, nurses, and our kiddo’s teacher, we embarked on a compressed version of the trip we’d planned. 

It was exhausting and sometimes overwhelming, but totally worth it. Lori and I wanted some happy experiences for our family before things change due to my treatment schedule and its potential side effects. 

I’ll set my griping about theme resorts and capitalism to one side so I can talk about my picture. That’s me on a ropes course at the Lodge, in the middle of (slowly) making my way across a wobbly rope bridge. My daughter challenged me to try it after she’d gotten across herself. My balance is not great so my heart was racing. I had to focus on controlling my breathing. But I wanted to know that I could do the scary thing, and in the end, I did! 

(Epilogue: The upper level of the ropes course had trickier elements that neither of us were ready to try, so we called it quits after that. Do the scary thing, but know your limits, too 😅)

In less than a week I start daily radiation and chemotherapy treatments. It is also a scary thing and I cannot know how it will go for me, as everyone responds differently. But hey, I got across the rope bridge; a fancy flashlight and a couple of pills should be no problem! 

Well, I can hope so, anyway!