An Unexpected Journey

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!

(Editor’s note: I’m still sort of figuring out my ‘voice’ when it comes to writing about my journey, so please forgive any wild swings in tone between posts)

This week I did the radiation simulation to prepare for my treatments later this month. After arriving at CancerCare Manitoba in Winnipeg, I was told to use the bathroom and then drink a fairly specific amount of water with a bit of contrast fluid inside. The amount of water — 325ml — will be a part of my daily treatments, as they want my bladder to be roughly the same size each time they irradiate me. After waiting an hour in their (comfortable, spacious) waiting area for the contrast to settle in, I was brought in for one more CT scan.

These images will help them shape the radiation beam when treating me, and it was also a trial run at aligning my body on the table. You can see laser lines in the second image that were for this purpose, but also, I got my first-ever tattoos; a tiny dot, the size of a freckle, on each hip. These are permanent, and will make it easier to get me lined up perfectly each day. 

Everyone we’ve met has been patient and gracious so far. I’m trying to reflect those qualities back!

In other news, folks can sign up to drive me to treatment appointments in Winnipeg! I’ve added a bunch of dates to the Calendar area of this site, and though June is covered, there are still several open days in July. If the promise of sparkling conversation isn’t enough, South Central Cancer Resource reimburses clients for mileage and parking, so I can pass that benefit along and offset some of your costs. Thanks One Million to them, and to the volunteers who have reached out to us so far! I’m honored!

On May 3rd, I underwent a colonoscopy that found a growth in my lower intestine, very near the exit. The doctor was extremely confident it was cancer, and the test results on the sample taken would later prove her correct: rectal cancer, stage 3.

While I had been experiencing relatively mild symptoms since the beginning of the year, this discovery certainly came as a shock. Our plans for travel, for home renovation, even for summer activities were upended as we faced a new reality of tests and treatments. We still grieve that other version of 2024.

As it stands, I am scheduled to begin radiation and chemotherapy simultaneously on June 20th, followed by another round of chemo and ultimately bowel surgery in which they will remove what remains of the growth. I’ve been told this cancer is serious but treatable, and we are aiming to eradicate it completely. 

A lot of new information has come at us pretty quickly, and it has been challenging to keep up and keep others in the loop. I knew right away that I didn’t want to take this journey alone, so this site is intended to have regular updates so folks can follow along with us as we go through this. 

These last few weeks have been a flurry of tests and consultations. Lori and I have treasured the moments of joy, calm, and connection in our home as we awaited a more definite treatment plan. We are continually humbled and encouraged by the words, deeds, thoughts, & prayers of folks supporting us. Thank you all so much!