Treatment Progress Check: As I write this, I’m on day 12 of a 21-day treatment cycle. I’m in the 4th out of 5 cycles. I’ve only got pills for today and tomorrow, then I get some time off, and I’m feeling…pretty okay! This weekend I was able to put up Christmas decorations, go with my family through an interactive Nativity thing in the park, and Lori and I did a Christmas Shopping day in Winnipeg yesterday. I’ve got a short list of tasks to do during my Feel Good week coming up, and then it’s one more IV Chemo treatment and the side effects thereof. Still trying not to overdo things, but as always, I’m grateful to be up and about.
A nice, bright bush at our church.
Something that I often think is that I’m doing this journal wrong. Nobody has told me this, of course, and there’s no concrete reason to think so, but I am indeed my own harshest critic and that hasn’t stopped just because of a little thing like having cancer. I may write as though I’m becoming enlightened, and perhaps that’s true in increments, but as a human being on planet earth there’s still a lot of work to do on myself.
Anyway. This journal. I ask myself, and sometimes Lori: “Is it too honest?” or “Is it not honest enough?” or “is my tone too serious? I’m not that serious” or “maybe the tone is too light? this is a difficult subject” and on, and on. I’ve rarely felt entirely happy that I’ve said exactly what I want to say, in exactly the way I want to say it. Thus, I tell myself, I’m doing it wrong. I think I must somehow be misrepresenting myself or my journey to my readers. I’ll be outed as a liar, a fraud. By whom? Don’t know. The Journal Police, I guess. Somebody. It isn’t a rational line of thinking, so the details aren’t always as important as the broad strokes.
When I read this back to myself, of course it sounds ridiculous. There isn’t an objectively correct way to journal one’s way through a cancer experience. There are tips, and guidelines, but I think I’ve got to make my peace with the idea that whatever I write is the thing that needed to be written at the time I wrote it. And, there’s no Journal Police, slowly building a case against me, waiting to pounce.
So, to my inner critic, I say, silence! Even if you think I’m doing it wrong, I’m still gonna do it.
My boy helps decorate our rather eclectic tree.
Anyway, that’s all for now. Thanks so much for reading this, and to everybody who leaves lovely comments. You’re all doing your best out there in the world, I’m sure.
Treatment Progress Check: As I write this I’m on Day 4 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. I think I’ve gone and confused myself as to when a cycle is done or not, and I’m sorry if I’ve confused you too. I am currently in the midst of the 4th cycle. I’m getting a little better at understanding the rhythms of when I’ll feel good and when not; for instance, the first day after IV treatment is a Day where I Feel Great But It’s A Lie. For the first three cycles I’d feel really good on that second day but overdo things and my energy levels would crash the next day. This week I’ve seen it for what it is and made sure to take it very easy on myself that day — I really think it helped. It’s a little too bad that it’s taken this long to understand the rhythms, but right now it feels like most things in life change when you’ve just started to truly understand them.
There’s something I’ve been a little obsessed with for most of this journey, like since May. It’s the opening to the show Mad Men:
I haven’t actually watched the show in years and years, but many times, as I’d be lying in bed trying to sleep, the song or the image of the man falling would show up and play out. Over and over.
I’m not going to try and pretend this goes any deeper than you’d think, just by looking at it. The man has his life seemingly together, and then everything collapses and he falls seemingly endlessly. Sort of like having the rug pulled out from under you with a diagnosis. It makes sense that my mind would latch on to that as a way of visualising how I was feeling. (It also helps that the drums are great — but they’re not part of the metaphor, I don’t think)
I just note it because it’s interesting to me that my brain pulled this out of storage and chose to dwell on it, again, not having watched Mad Men in at least a decade.
Serenaded by my lovely family with ukuleles for my birthday. I’m not asleep, just drinking it all in haha [Photo posted with permission]
This cycle I’ve been trying to focus on what I still have. Looking around the chemo treatment area during my last treatment really drove home what I can still be thankful for; hopefully not in a pitying way of the others, but like I said, as a reminder of what I’ve got going for me even now. I get to keep my hair, for instance! I feel slightly vain every time I say it, but my thick hair has always been a point of pride, and it would’ve just added more mental weight to the adjustment of treatments.
Also, I can move under my own power, and in a pinch, I could even drive myself to and from appointments. Not everybody can say that. I spend a pretty decent amount of time napping (especially in the past few days) but I’m not absolutely wiped out by sickness or fatigue. I even got to lead a song in church this morning and feel good about my voice. It was a bit challenging to move around — I do feel weak these days — but I’m pleased that my voice and mind are still in working order.
(At least — I think my mind works? Maybe this is all rambling nonsense lol)
A pic from a tabletop game called “Shadows in the Woods” — we’ve still never really managed to play it ‘properly’ but Cassidy and I enjoy messing about with it.
A quick summary of the events ahead; I’m scheduled to do my last IV chemo treatment on December 3, taking pills until the 17th and being able to stop all this treatment stuff just in time for Christmas. Nice! A recent phone call with my surgeon indicated we’d do another round of imaging in mid-to-late January to see how the treatments did; however, regardless of how it looks I’m hearing that there’s still going to be a strong recommendation for surgery. They explained that imaging isn’t perfect and your *ahem* ‘back door’ is really not a place you want cancer to reoccur, so, the suggestion is likely to be that we throw the baby out with the proverbial bathwater.
That will create a whole ‘nother series of challenges that will keep me blogging well into the next year, I expect.
At least I won’t have to take a dozen chemotherapy pills daily!
Treatment Progress Check: As I write this I’m on Day 26 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. My next IV Chemo treatment day is set for Tuesday. As you’ll recall, I got extra days in this cycle because my platelet count was too low to continue. When I went for lab work on Thursday, I was told my platelet count was still low! But they reached out to my oncologist in Winnipeg and got the ‘all clear’. Well, not ‘all clear’ exactly, more like, ‘it’s probably fine???’ At least, that was the tone I felt. So on we go!
Personal Progress Check: As I write this, it is also: my birthday! I’m 42 years old today. When folks have asked my age in the last while I’ve already been thinking “42” and then correcting myself. So, mentally I feel prepared.
I don’t have a lot to say for myself this week. Having another week off was lovely, and I’ve been savouring cold drinks and ice cream treats before I have to put them away again. What else? I recently changed pharmacies due to communication issues with the last one, and the new pharmacy has been lovely so far. It’s also kind of incredible that my pills always say $0.00 on the tag when I leave with them; I’m taking a lot of medications during this time and they’re all paid for by the provincial government already. My tax dollars at work!
It’s also been just over six months since I got my diagnosis and started this journey. It’s been quick and not quick at the same time. Lori asked me today what I’d tell my past self, if I could, and I decided I’d say that every time you feel really bad, in your body, know that you’ll feel better eventually. Maybe that goes for my mind as well. But it’s the best advice I could come up with.
Anyway, be kind to yourself and others this week, and we’ll see you on the other side of treatment day.
Treatment Progress Check: As I write this I’m on Day 19 of a 21-day cycle. Currently I have completed 3 out of 5 cycles. I’m in the ‘break’ part of the cycle where I don’t have to take pills and can just recuperate, so I consider this cycle to be complete. However! I was set to start a new one on Tuesday and that’s been pushed back a week because my blood platelet count was too low. Nothing I can do to get more, so I just have to wait before Feel Worse Day comes around again. Aw, nuts 😉
Fun fact! Platelets are the things in your blood responsible for clotting up a cut when you’re bleeding. So, don’t attack me with a knife right now or anything, okay?
My black cat has become powerful enough to be an actual shadow creature and is now unstoppable from stealing chicken off the table
My radiation doc is funny. I can’t remember, but I may have mentioned his bizarre confidence earlier on in this journal. I mention him now because we had a follow-up phone call with him recently, and the confidence is still there, and makes us chuckle. He’s a good doc, and trustworthy I think, but he just has this belief that his branch of oncology is the superior one, and we kinda love him for it.
One of the first things he tried to do was establish that whatever bad side effects I experienced were the result of the chemo pills I was also taking, not the radiation, obviously. I may even have laughed a little in the meeting before realizing he was serious, but in my mind I’m thinking the chemo docs are gonna say the same thing, but reversed.
During our phone call recently, he surprised us again by saying, with complete confidence, that the cancer was in fact already gone! The radiation had saved the day, and things were now totally fine in there. (This without any follow-up imaging of any kind, which may only be in January). Also, any negative side effects I was still experiencing were, again, due to other treatments. Then he wished me a Happy New Year and hung up. And we laughed again.
I just love how sure he is. He may or may not be right! But it’s funny, months after radiation has ended, to get a call saying “yeah, you’re probably fine now, no worries, bye” in quick succession when he really doesn’t have hard evidence to back that up. At least, we thought it was funny. It’s that or get frustrated about it, but nyeh, no thanks.
Pictured — my hastily assembled Rock Star costume for handing out treats on Halloween.
I’ve been feeling surprisingly good this week, and really enjoying the simple pleasure of a chilled glass of water, because right now it doesn’t make my nerves freak out and my throat close up. This new delay in my treatment schedule means I’ll also get to spend my birthday (one week from today, as I write this) in the Treatment Break Zone, and maybe I do get to have an ice cream cake on the day after all. I may not. I haven’t decided. I actually haven’t decided anything about what I want to do for my birthday. I left it all up in the air because I didn’t know where it would fall in my treatment schedule and how I would feel when it came around, so I didn’t want to make any elaborate plans that I might have to give up on.
Anyway, I made my elaborate plan last year and almost gave up on it like two separate times because of sheer anxiety and self-doubt, which was when I declared that even though the party ended up being a great time, I was done with birthday parties. So right now the plan is, and will continue to be, nothing.
It’s a little tough because my b-day, being a Sunday, is just two days from the next Feel Worse day when I get the fourth IV chemo treatment. It’s not often in your life that you get to know the exact day that you will feel bad, like if you could predict a nasty flu with utter certainty. I know I’m working on this ‘mindfulness’ and ‘being present’ thing but I think it’s going to be at least a little tricky to celebrate, knowing that some fresh suffering is coming two days later.
Okay, that last line sounded a little over-dramatic when I read it back to myself. The treatments are surely not the worst thing a body can be subjected to. But the point remains that I still dread them. They cast a shadow on the days leading up to them, and I think that’s probably normal.
In any case I’m resolving right now to try and notice, and fully enjoy, all the normal things I get to do while I’m in the Treatment Break Zone. Let me gently encourage y’all to notice and enjoy the good things in your days as well, even if it’s as simple as a refreshing glass of water.
Treatment Progress Check: As I write this I’m on Day 12 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. Things generally tend to improve once I’m at least a week out from the IV treatment, although they can still go up-and-down on a daily basis. Like for instance, Friday I felt good enough to go with Lori to The Show That Goes Wrong at the Royal Manitoba Theatre Centre (and we had a great time). Then yesterday I felt pretty wiped out again, and making a short trip to the grocery store was a challenge.
A big thanks to everyone who reached out in the last week to encourage me and us! It means a lot to have you folks in our lives 🙂
Another pic idea that Cassidy suggested would make good content for this blog.
This past week I joined a Mindfulness practice course put out by CancerCare Manitoba. I have some experience with mindfulness meditation in the past, but I thought the refresher would be good. Also, doing it all through the lens of being a cancer patient (or support person) would perhaps be helpful and feel more relevant now. We meet Tuesdays via Zoom, and started out doing your usual things like a body scan, holding a raisin in your mouth, and some breakout rooms of conversation with other course participants.
We were asked to discuss amongst ourselves why we’d chosen to take the course, and I chose to share something that had come up in my counselling sessions as well; I’m not sure I’ve let go of being “pre-cancer Nathan” again. Intellectually I know things are different, that time marches on and we can’t go back, but some part of me is hoping against hope that everything will go back to ‘normal’ and I’ll carry on being the guy I was at the beginning of the year. I get pretty emotional when I think hard about how that…won’t really be possible, and so I know there’s more to unpack there but I haven’t really taken the time to do it.
I thought a Mindfulness practice — a course about practices that help ground you in the present moment and experience things as they are — would help me not to dwell on a version of me that no longer exists. We’ll see if that turns out to be the case.
Two other things I noted from the Mindfulness session; for those who’ve never done a practice like this, the instructor helpfully clarified that this is not meant to be a ‘spiritual’ practice that changes or replaces any beliefs we currently have. I think that’s still a fear people have; the word ‘meditation’ can have some connotations for folks that put them on edge. In my experience it’s more about slowing down, and finding a restful place to check in with yourself and what you’re currently feeling, both physically or emotionally.
The other thing I found interesting was that the instructor told us not to ‘fix’ or ‘help’ each other. We’re more than welcome to share things that have worked for us, but we’re not welcome to try and foist those on to other people, as we’re all coming from different treatments, experiences, diagnoses, and backgrounds. As somebody who still struggles to just ‘listen’ to another’s problems without trying to jump in with a solution, this was a valuable reminder.
On a more practical note, my hands and feet were really tinglin’ this week as the weather got colder. It turns out my gloves are not adequate, and I’m probably going to have to wear one of those face/neck warmers soon, even though we’re not below zero yet. At least I can drink things that aren’t hot these days — warm water is…not very refreshing.
Treatment Progress Check: As I write this I’m on Day 4 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. At this moment I have a bit of a head cold, which is making the first week of post-IV-treatment a bit tougher than it really needs to be. I’m still quite cold-sensitive, and as another fun side effect I’ve lost a lot of my ability to taste food. Combined with a general diminishing of appetite, I find myself in a real “food is fuel” place where I’m just sort of…putting things into my body because I know I need the energy, and not because I enjoy it. Which is sad! I like food! I want to enjoy it!
I think I struck the work/life balance this week a little better than before, which was good. However this weekend I’m really suffering with this cold thing I mentioned, on top of trying to keep the kids enriched while Lori works. I’ll get through this, I know it.
I didn’t have a lot from this week to talk about in terms of my personal journey, so I decided it was time to share my cancer journey playlist. It started on Spotify as something I’ve been slowly adding songs to since basically the beginning of this in May, and while most of them may be obvious choices, some of them are maybe not, and I wanted to highlight a few entries. Maybe it’s something you can find a bit of inspiration from as well.
I invited Lori to listen to it early on and one song in particular that has stood out for both of us is called Look At The Sky by Porter Robinson. I know the lyrics are about being creative and finding your spark again, but I can’t tell you how many times I’ve looked up while outside and said, or sang: “Look at the sky, I’m still here / I’ll be alive next year”. This has become a meaningful…prayer? Request? Mantra? Statement of intent? Something along those lines.
Most of the rest of the songs are about acceptance and meeting ones circumstances as they are, about not being afraid to ask for help, and about knowing that there can be something good beyond your present experience. I’ll highlight two others:
Times Like These by Jack Johnson – this one’s notable because the radiation technicians started playing it as one of my treatments started, and while I still don’t like to think about that machine, it was a lovely song and reminder that “what will be, will be” as I went through those treatments. I’m not the first person to encounter hardship and I won’t be the last.
All Together Now by OK Go – this was actually written and recorded while the band sheltered-in-place during that global pandemic we had a few years back. So a lot of the lyrics are about who we plan to be on the other side of a life interruption like this. Our best selves? Our worst? The line that strikes me each time goes “Nothing changes until one day it does / and there’s no going back”, which is, you know. Pretty relevant.
The pizza wanter
An unexpected side effect of something I’ve been putting in my body — who knows which thing exactly — is that in the past few days my dreams have become quite vivid. Not scary, just very real-to-me and difficult to separate from reality on waking. For instance, just this afternoon, while napping, I dreamt of stumbling on to a huge supply of free canned mushrooms. I was excited because I felt it’d be something we would use in our household. Even as I woke from my sleep I couldn’t wait for Lori to get home so I could show her how good they could be, and it took a long time of lying awake to realize they didn’t exist. I could even picture the packaging! I had been chopping them to saute some!
There was a lot more to the dream but the point is that it felt very real and natural in a way that I’m not accustomed to outside of being ill. Actually, my fever dreams are a lot less coherent and more repetitive than these. I guess we’ll see if they back off, or if I can trace it to something in particular over time.
The last few days haven’t been easy. None of this really is, but I don’t need to belabor the point. I’m technically over the halfway mark of this treatment plan but the rest feels uphill from here. If you can spare a prayer or vibes or whatever, please; ask for a bit of hope for me and for us. I’d really appreciate it.
Treatment Progress Check: As I write this I’m on Day 22 of a 21-day cycle. Currently I have completed 2 out of 5 cycles. At this moment I’m on the ‘medication break’ portion of my cycle, and actually I get a few extra days of no meds because I had my next treatment postponed until this coming Tuesday. Aside from one or two symptoms of a personal nature I’m feeling pretty normal these days — feet don’t really hurt, and I can have ice cream for the moment. Which I did today 🙂
Let’s start with the elephant in the room — yes, I missed last week’s update. It turns out that if I don’t sit down to write on the weekend, I will not have the time or brain-space to do it during the week, not really. So please rest assured that it was not because my symptoms had taken a sudden turn for the worse! It was actually that things were pretty good and I wasn’t sure what to write about.
There was one thing to write about, and then another one cropped up yesterday, so let’s talk about those things!
Some time ago I wrote about trying to thank my pills because I resented taking them so much. I was trying to turn my attitude around and see the good in what they were doing. Well, that worked for a while, and then it slowly started to feel rote. A friend of my wife’s heard about this and made a new suggestion; when Lori conveyed it to me, I got emotional and said “yes, that’s it, let’s try that.”
The suggestion was this: with each pill, name somebody that I’m taking it for. “This one is for Cassidy”, so that I can stay in her life longer. “This one is for Avery,” same thing. And so on. Each pill gets a new focus on the reason I’m taking them, and I have to say, even though it came late in my treatment cycle it felt really effective and I’m going to start again on Tuesday.
The only minor issue was running out of ideas on the sixth pill, so the first time I tried this exercise, I dedicated that pill to my enemies. I figured, surviving out of spite is a good reason too. After all, living well is the best revenge!
(Editor’s note: I am genuinely unaware of having any real enemies)
We were told that under no circumstances were we allowed to have our phones out on the actual field. We weren’t told why…
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.
Look at those kids, having a nice time
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.
The world’s largest Van Gogh reproduction, which we went past on a little weekend drive with the kids.
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.
A snap from a Saturday outing to the library with bonus nearby park exploration.
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)
A little gift from a lady in my church. It fits nicely in the center of my palm.
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.
Cassidy X Daddy DJ Collab shot. We played loud dance music and pretended to adjust knobs and spin records. It ruled.
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?”
Our dog and his incredible capacity to make himself comfy and immovable
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.
If Gideon Fits, He Sits
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.
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.
