An Unexpected Journey

Treatment Progress Update: I was supposed to have started my fifth and final cycle this week but there was a slight complication — more on that in the body of this post. I’m feeling really well and drinkin’ cold stuff right out of the fridge. Not looking forward to losing this ability again come Tuesday, but I am looking forward to it being the last time I’ll lose it.

Something I’ve generally tried not to do is ‘play the cancer card’; Meaning, I try not to demand special treatment or status because of my illness. I think I’ve written a bit about this before.

This last Monday, however, there was the complication I mentioned. I met with my family doc in the morning to do a pre-op checkup regarding the surgery that is likely to happen early next year. This wasn’t a physical exam in the sense that I expected — mostly just a big questionnaire that we both had to fill out. While I was there I asked for a flu shot, as I am immuno-suppressed and cold/flu season is in full swing. They gave me a High Dose and I went away satisfied.

Well. That afternoon I developed a persistent cough and started shivering uncontrollably for several hours straight, while my temperature climbed into the (low) fever regions. We wondered aloud if it was just me reacting to the flu shot, but here’s the thing: when you have cancer they will tell you that if you have even a mild, low-grade fever, you need to get yourself into the E.R. immediately. It could be nothing, but it could also be a clue to a more serious infection happening somewhere in the body that could greatly complicate matters. Then, they give you a pink card that has your name and treatment details and some instructions for the attending E.R. physician. One of the instructions is that you are to be seen as quickly as possible.

So it’s a literal cancer card.

We called in Lori’s folks to watch the kids and off we went to the hospital, which was already having a pretty busy night. And yes, I brought the card, and showed it to the triage nurses. I was whisked in and put through various tests (blood, urine, X-rays of my chest) with relatively little wait time between stops. As a people-pleaser it did not necessarily feel good to be shuttled past folks that looked like they’d been waiting a long time, but all along I was assured by staff that coming in was the right call and that I wasn’t abusing the system in any way.

We did still end up being there for a couple of hours in total, what with waiting for test results and talking to the doctors & nurses. Still, I definitely walked out past people in the waiting area who had been there when I came in. In the end I was prescribed a short course of antibiotics, which ended up delaying the IV chemo treatment I was supposed to have had the next day. They didn’t want to overlap the chemotherapy & antibiotics, apparently. This was disappointing, as I had been looking forward to being over my treatments by Christmas Day and now…I’ll still be feeling a bit yucky.

Still, I get a good New Years’ 🙂

(As an epilogue: the cancer ward called me a few days later and said they’d talked to my family doc and learned about the high dose flu shot. We agreed that it was probably the culprit. “That wasn’t in the notes from the ER”, they said, and I am not sure because I feel like I definitely mentioned it? But anyway, they said I could stop the antibiotics immediately and get ready to get treated on Tuesday next.)

The kind of person I am is one that historically has not liked to make waves or take up too much space. My illness makes that mission much more difficult. I needed rides to the city in summertime, I need to take more downtime to look after myself, I need time off from work for appointments. Even getting priority access to the E.R.. All of these things, I start to tell myself, increase the burden and workload of people around me, and how dare I do that? But I would happily do what I could for family and friends in the same predicament. Maybe one day I will have an opportunity to pay it forward. Maybe I will not, and will simply have to accept the kindness and generosity of those who carried me when I couldn’t walk on my own.

Either way, I’m continuing to try and convince myself that I can take up space in the world. The work will probably continue well after this ‘cancer’ business is behind me. C’est la vie!

Treatment Progress Check: Right now I’m nearly finished my 4th cycle, with the 5th and final IV treatment set for Tuesday. As always this will be followed by: a week of feeling kinda bad, then a week of feeling only a little bad, then a week of feeling pretty okay actually. And then I’ll be done, and hopefully feeling fine in time for Christmas! What a gift for me 🙂

First of all, thanks so much to everyone who goes out of their way to comment on the blog here or on the various social media platforms where I share this. As I’ve said before I may not respond to everything but I do read it all, and y’all were wonderfully supportive after my last post. Much love <3

What’s on my mind this week is: surgery. I haven’t talked a lot about my impending surgery because I still really can’t think about it too much. As in, I feel incapable of focusing on it for very long; either my brain slides off of topic and on to something easier, or I get overwhelmed by information I don’t need yet. But, to face facts for just a moment: I’ve been told I will be having a colostomy. The nature and location of this cancer is such that the operation will be permanent (or at least, permanent until medical science advances to the point of being able to reverse my situation somehow). This will also mark another change in the story I tell about myself, from A Guy, to A Guy With Cancer, and then A Guy With A Disability.

None of this is the end of the world. In fact I keep telling myself that it’s vastly preferable to the alternatives, and if it allows me to see my kids graduate then it is the best way forward. I know that people in very similar situations to my own have gone on to lead healthy, fulfilling lives. But it’s also a lot for me to process! And since we’ve been so focused on just doing the Next Thing in terms of treatments, I haven’t really had the space or need to do so. As of now I’ve done very little processing. The closest I’ve gotten is that in the past week or so I’ve started to form questions in my mind about what life will be like on the other side of surgery, but I’m still not to the point of being able to actually doing any research.

(Folks in the comments: this is not an invitation to share resources, blogs, etc. I will almost definitely not look at them.)

It’s gonna be okay. I’m stronger than I tend to think I am. It’s just…[long, dramatic sigh here]

What’s been good this week? I’ve been feeling really well and gotten to see some friends from out-of-town. The very bothersome tingling in my hands and feet has gotten much better. And I got a lovely vinyl LP of Star Trek themes from an internet Secret Santa exchange. Lastly, I’m relishing cool tapwater. I’m sure I’ve mentioned this, but in the days after IV treatments I cannot drink anything even a little cold, or my throat feels weird and starts to constrict. And hot water is not very refreshing. So when I go to the sink in the middle of the night for a quick drink, I stop and feel grateful for being able to just gulp it down.

Enjoy the little things, folks!

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.

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.

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.

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 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 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.

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 🙂

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.

Everybody hang in there this week!

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.

Note: If you don’t have Spotify you can try this YouTube alternative I made just for you 🙂

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.

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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.

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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)

Now let’s talk about being a flag bearer at the Winnipeg Blue Bombers game!

We drove to Winnipeg and took a shuttle bus to the stadium. I was impressed by the place, having never even been near it. I was told to take the Media entrance, and we confused some security personnel because we were the first ones there. After some walkie-talkie calls and a bit of “stand here, no wait, over here” they got it sorted and Lori headed off to find her own seats as the other flag bearers and our minder arrived. There were about 18 of us, mostly women. We were gathered and ushered down into the bowels of the building, past one of the main entrances to the field.

We ended up in a small area off a hallway, where some highly experienced volunteers dumped a lot of information on us about how the flag ceremony is supposed to go. If I recall correctly, the flag is 30′ x 60′ and cost around $5,000. As such they were very keen that we don’t let it drag or expose it to rain. There are labelled handles all the way around the outside and we were assigned spots, and taught the particular way to hold the flag before unfurling it.

Myself, another cancer patient and two volunteers from CancerCare Manitoba were placed at one end of the flag, so we were sort of the head of the dragon as we marched the flag back through the hallways, past the big entrance to the field, and toward a smaller one. We stopped and waited in order to let the Toronto Argonauts pass very nearby and get to their change rooms; one staff member informed us, being the closest people to the passing Argos, of what our dialog options were:

• “Hi”
• “Have a good game”
• [say nothing]

Mostly the players only gave us passing glances. Certainly nobody tried to engage with us, even though I did my best to smile and kinda wave at a few. What! They’re just a buncha (pretty big) guys.

Once the Argos had passed by we marched to the smaller entrance to the field and waited for some pre-game entertainment to wrap up before we headed out. Some kids excitedly yelled to ask if that was The Flag and if they could carry it, to which I cheerfully shouted back “No! I am!”

From there we got to head onto the field, and at last we were able to pull our handles and pull the flag apart to spread it out. Fortunately the wind was calm and it was not too difficult. Then we hung out there and sang the anthem along with the designated singer, and before I knew it we were closing up shop and heading back the way we came. I was surprised at how soft the turf was, actually? Overall, what seemed complicated and very front-loaded with information was actually not too bad at all; just follow the staffers!

It was a thrilling experience and I was beaming the entire time. As always, we wish the circumstances surrounding an experience like this were better, but I’m so grateful to be healthy enough to seize a unique and fun opportunity like this.

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Tuesday is Feel Worse day, come round again. I want to hold on to these extra days of rest and remember that I won’t feel bad forever. And, I don’t want to take the ‘good’ days (like yesterday) for granted either.

Treatment Progress Check: As I write this I’m on Day 11 of a 21-day cycle. Currently I have completed 1 out of 5 cycles. Last week I wrote that I knew things got easier from the treatment onward, but my body’s been a bit slower to recover this time. For instance, in the first cycle, the cold sensitivity mostly went away after a week. Yesterday, 10 days in, handling eggs when making breakfast still feels like I’m holding ice cubes. Still, I’m getting through the days.

My keywords this past week have been “slow down”.

This is a weird thing for me, because I’ve never considered myself a particularly “fast” or “industrious” person. But in big ways and small I’ve been noticing the way I push myself to do as much as before, or at least as much as I possibly can in that moment, before feeling like I’m ‘allowed’ to take a break and rest. I want to walk as fast as I normally walk, but my feet are getting much more tender, and my body is working through some pretty serious medication, so I have to remind myself that I can’t. Yeah, sure, I want to rest, but first there’s just this quick thing to do in the house, and that thing, and oh Lori would appreciate it if I just did that thing, and so on. I want to spend as much time in the office as I normally did, but is there really any point to sitting at my desk with my head in my hands, unable to work up the resolve to start a task?

And like I said, it’s surprising to see myself in this light! I look at people in my life that seem to be constantly in motion and unable to just sit and be, and I tell myself “hah, couldn’t be me!” But it turns out it’s more complicated than that, and there are ways I push myself that I hardly register.

So this past weekend, while Lori was away at her work and it was just me and the kiddos, I said to myself: you are going to move at a slower pace. Physically and mentally, slow down. Set your expectations of yourself low, and be happy if you hit them, but fine if you don’t. Now I’m about to brag that I accomplished a “surprising amount regardless!” but now that I write it out it seems like I’m still not quite taking the right lesson away from my experiment.

As with many things I’ve written about in this blog, it’s something I get to keep in mind and keep working on.

On a much less serious note, I recently had to change the notification sound on the medication reminder app I’m using. The problem was that, twice a day, the default sound was a little flute melody that happened to sound just like the opening notes of Welcome to the Black Parade by the band My Chemical Romance. After a week or so, my family was becoming very tired of me singing 🎵When I was / a YOUNG boy / my FAther 🎶 at breakfast and dinner.

_{(Drop a note in the comments if you felt compelled to go listen to the song again after reading this)}