An Unexpected Journey

I got some good news this week and it is this: as far as we know right now I am Cancer Free, Babyyy! (you should click play on the sound below)

My surgeon phoned me while I was following my boy through a grocery store. It was right around supper time and there were very few customers, and at this particular store there are child-size shopping carts that Avery just loves. We had our list covered and were meandering toward the tills when my phone rang.

The surgeon informed me that the pathology report had come back on the growth they removed in surgery, and the news was good. He said the tumor showed signs of being reduced by the treatments last year, and had “good margins”, which he explained but I also looked up at home; it turns out that when excising a tumor you take a layer of the healthy tissue surrounding it as well. When the mass is examined later, this layer is checked, and if cancer cells are found, there’s a chance it wasn’t all removed in surgery. In my case, the healthy tissue layer was intact.

The surgeon also removed a suspicious lymph node that was near the mass and showed up as a bit enlarged on scans. This node was worrisome because — as I understand the human body — the lymph nodes are like Super Mario-style Warp Pipes for cancer. If a node is infected, the cancer can get into the lymphatic system and pop back out basically anywhere. Thankfully, that lymph node was found to be clear as well! Hopefully I can do without it? It doesn’t seem to have been load-bearing, in any case.

_{[Editor’s note! Another quick search reveals that people have, on average, 600-800 nodes around their body. Removing them is not without risk, but for me, the benefits greatly outweighed those risks. And overall I’m probably not going to miss it.]}

I’ll admit that the excitement of the news did not occur to me right away. I was happy that the results were good, but it wasn’t until I started getting really excited reactions from others that I realized “Oh, this is like, really good news. Great, even.” In part this is probably because I received the news while half-distracted by my small child going this way and that through the produce department. But, as I’ve thought about it over the week, I think that part of my subdued reaction is because that it just hadn’t occurred to me that the surgery would not have worked. (Not bothering to think of negative outcomes is a theme that has definitely come up before on this blog.) I think in my mind I was irrationally convinced that all the pain and suffering guaranteed a positive outcome — otherwise, what was it all for? Nothing?? Impossible.

In any case I’ve been spreading the news all week long, and now I spread it to: you, dear reader! Thank you again for coming along on this journey with me.

In other post-surgery news, my recovery is still continuing, and even though not every day is easy they are getting easier on average. Also, I’ve gotten Good Enough At Colostomy that my home care visits have officially ended. This is good because I can now change bags on my own schedule. Lastly, I know I threatened to slow down at posting a few weeks ago, but I still feel like I’m coming up with things to talk about, so we’ll see you here again next week I guess.

Last Thursday was exactly a month since I went into the hospital! It feels like ages ago, and also yesterday.

At this point I’ve also had a couple of weeks of regular visits by home care nurses. They’ve been very encouraging and tell me I’ve made great progress on learning the colostomy bag replacement process. Actually, the last time or two I’ve basically done it myself, while the nurses supervise and offer tips and suggestions. It’s a little time-consuming, but not terribly complicated.

The physical process may be coming along well, but the psychological side of things has been going more slowly. At first, while still in hospital, I wasn’t even able to look at my stoma. Once I could do that, it was another hurdle to be able to touch and interact with it. Again, even though it’s a bit of your intestines on the outside of your body, there’s no actual nerve endings there. The most you’ll tend to feel is a bit of pressure from the skin around the stoma rather than any feedback from the thing itself. But there it is, a roughly 1.25″ red thing on my stomach that looks for all the world like a gaping wound. When a nurse or myself would interact with it I kept trying not to flinch away. My mind kept telling me that it should scream with pain, like any other wound would.

But, over time, I’m learning that it’s okay. I mean, don’t be rough with it, but it’s not going to hurt, either. And so I’m heading toward the next hurdle: just…sort of generally being very unhappy about the whole situation. I actually did change my bag myself today (with Lori giving things a quick look over before I started, and being nearby for questions / concerns). While approaching completion, Lori happened past the bathroom and I said aloud what my mind was repeating to me: “I hate this.” Not said in anger, just unhappy resignation.

This one will probably take a bit more time to deal with. Probably quite a while, if I’m honest. At least I can begin to deal with the mechanics of my situation. And, I get to put on some good music when I do it myself.

Otherwise, my healing slowly continues. I keep being surprised by hitting my limits in a day, and feeling exhausted and uncomfortable as a result. We did get to attend church in-person for the first time in ages, and I had a lot of wonderful folks tell me I “looked great” and give hugs. I never used to be a hugger, but tbh it meant a lot today.

People! They can be pretty nice, it turns out! And sometimes they bring you delicious baking that’s shaped like the first letters of your family’s names:

“Progress! Why can’t you be linear!” I have said aloud, to nobody in particular, many times.

The good news is that I’m healing well. I’ll have a gnarly scar from my navel to about my waistband area, but my mobility is getting better and better. My stitching is still uncomfortable to sit on, and my current office time tops out at two hours before I really need to change position and have a lie-down.

Yes, I have returned to work during this time! Or at least, in a limited capacity. I’ve probably mentioned before that people are consistently surprised that I’ve been continuing to do my job in the past year, and especially post-surgery. I have been fortunate to have work-from-home options and an extreme amount of time flexibility with my job. As long as I’m making sure the critical stuff gets done in a timely fashion, the rest of the Jelcan Inc. management team is willing to give me a lot of freedom to come and go as needed.

The problem with this arrangement these days is a problem of my own making: setting boundaries for my self-care and healing is hard! More than once I’ve been sitting unsteadily in my home office chair, sweaty and uncomfortable, pushing myself “just a bit further” so I can finish a particular task and then go lay down. If I had just taken complete time off from my job I might be able to relax more easily. As it is, I might sometimes cut my resting short because of a to-do list hanging over my head. Again, this is a Me Problem; nobody else is pressuring me to get back in the saddle as soon as I have been. (In fact, we had a backup plan in case I was incapacitated by surgery for much longer than I was, but we never used it.)

I’ve gotten a little better at taking care of myself over the course of this journey, but you know. Progress there isn’t linear either. Progress! Be more linear!!

The above leads me back to something I’ve been wondering about this week, which is, how has this journey changed me? Lori and I were chatting about this the other day. I’m sure it has changed me, and possibly still is, but I also think I’m still too close to it to know how. It’s not something I’m worried about or spending a lot of time on, more of an idle curiosity. One day I’ll look back and see it.

We’re gonna talk about hospital, surgery, and a bit of bathroom stuff in this post, so if that makes you uncomfortable or squeamish you can definitely skip this one. It’s okay!

Hello. We have some catching up to do, don’t we?

…but where to even begin?

Okay. At the time I began writing this post I’ve been home for a week. My recovery progress so far has been slow and nonlinear, but there has been progress. I’m still uncomfortable a decent amount of the time, but I think it’s better to be uncomfortable at home, where at least I have a dog and cat to pet. I am not in serious pain.

My surgery lasted about six hours that day, and in total I spent nine days in the hospital, well more than we’d anticipated. The surgeons were very happy with their work and assured me they got ‘everything they could see’ of the remaining cancer. Of course, there will be followup testing in the coming weeks and months (and years?) to see if they were right, but it was very nice to hear that they were so confident. I’m also now the owner of a new stoma, an angry-looking but harmless red blob of my actual intestines sticking out of my tummy. And lastly, my uh, original “exit point” has been removed and closed up.

So if the original estimate was 4-6 days in hospital, what took me so long to come home? Well, I suppose there are a lot of factors they watch after a major abdominal surgery, but from what I’ve understood the major points of interest were these: 1.) is my system adapting to the new colostomy bag and 2.) have my midsection and muscles healed enough that it’s safe for me to navigate my own home.

The second part came more easily than the first. There’s a real emphasis on getting up and about after surgery, however briefly, and over the course of my time I went from white-knuckling a walker to shuffling around the hallways on my own power. A physiotherapy nurse also tested my ability to handle stairs. However, I’m still to take things easy at home; for the next 6-8 weeks I’m not supposed to try picking up anything that’s very much heavier than my cat.

The part about the colostomy, well, that’s had ups and downs. I will try not to be too graphic here. A couple of days after the surgery my bowels started to move again, slowly, and the bag began to be filled. Then, on Tuesday night, my body started filling the bag with brown water, over and over. The body’s typical daily output to a colostomy is supposed to be about 1.5L; overnight, I managed 6. (When the doctors made their daily rounds that morning I heard them curse in surprise at my chart — not the reaction you want). So, dehydration became a serious potential issue, and we course-corrected the next day with medications and supplements to try and slow things down. Those worked! Too well! And then acid reflux became a problem, and more sleeplessness ensued.

Things began balancing out toward the end of the week, but each day I was told to stay just a little longer. The logic was that if I went home too soon and things took a turn for the worse again I’d be in the E.R. and then back in hospital after a lot of wasted time. Here, I’m already in the system, settled in, and being minded by medical staff; why not take a bit of extra time now to make sure things are as normal as possible?

I understood this rationally, but it was often difficult and demoralizing to continue being away from my family and home. Lori moved heaven & earth to visit me nearly every day of my stay — love her so much — but mentally I just hadn’t been prepared for “4-6 days of recovery” to stretch into 9. Looking at those numbers now, with some distance, I get that it doesn’t seem like so much more, but my sleepless nights had a bad way of compounding the sadness and anxiety of it all. I went to some dark places in my mind, but I’m working with my CancerCare counselor about it these days.

It wasn’t all bad news. Like I said, Lori visited nearly every day, and other folks stopped by or sent messages of support. Maybe my favourite surprise came from my daughter’s 3rd-grade classroom, who all made me Get Well cards that I got to read when my kids came to visit one day. Most of her classmates don’t really know me, but Cassidy supplied a list of my interests and the cards were very sweet and funny. One of them gave me my new favourite knock-knock joke in the world, and I’m not writing it out here. You’ll have to ask me in person sometime 🙂

The ward of the hospital that I stayed in had been constructed some time ago, and air did not move easily throughout. I am naturally a warm sleeper and this led to some sweaty nights until Nurse Jane found me an oscillating desktop fan. Oscillating Desktop Fan was my BFF, a true sign that things were improving for me. If you ever read this: Thank you, Nurse Jane. Actually, the entire medical staff at St. Boniface were excellent and caring.

I briefly had two different roommates, and actually ended up making a local connection with the family of the second roommate. After that roommate was moved to his own room and I had my room back to myself, I’d frequently see the family in the hallways and we’d remind each other of our prayer support for each other. They were all going through a difficult time together, and I hope things continue to improve for them.

I returned home to three delightful surprises by my daughter; a stuffy from the Super Mario Bros. games, a vase full of handmade paper flowers, and a large, busily-decorated Welcome Home banner. Since then, I’ve been trying to: rest, recuperate, slowly catch up on office work, and contribute where I can in the home. Speaking of the kids, I’m told they were total champs through all of this, and I believe that the prayers & support of our family and communities had a big part to play in holding the household together while I was away.

Going forward: we’re still being very careful about my diet as my system continues to adjust. I need to continue to be careful about my physical and mental limitations as well; after all, I’ve only been home a week. And, just adjusting to this new lifestyle meant I didn’t even want to leave the house until I felt more confident, but I can feel that slowly starting to change. Progress, as I said, is slow, and not in a straight line, and most of all I need grace and patience through setbacks and difficulties. I’ve borne a lot of the events of the past year with courage and good humour, but I have my limits, and the past few weeks have taken me to those limits at times. This isn’t said to inspire pity; I know that there are many in this world who would rather have my circumstances than theirs. But I think it’s also okay for me to say: things have been tough, and will continue to be challenging for the immediate future.

Fortunately, I can try to learn from recent experience that the night eventually ends, and in the cold light of day you’ll wonder how things ever seemed so bad in the first place. And sometimes the right person will come along with a metaphorical oscillating fan that changes everything for the better.

One final note: As far as we know, the main part of my Cancer Journey is now…over! Hooray! But, that means I’ll be reconsidering how often I post. I’ve never had a definite endpoint in mind for this blog, but it’s possible there won’t be much to say for the next couple of months except “still recovering lol”. For now, I’ll still check in with you all next week, but posting frequency may start to slow down after that. I’ll make sure to warn folks 🙂

I just wanted folks to know that as of last night I’m home from the hospital, and recovering.

As I write this, there are just five days to go until my surgery. Also, I have two black circles, drawn in permanent marker, on my tummy. They’re a short distance from my navel and covered with a sort of transparent medical sticker. These circles are potential places for my ostomy, and they were put there during a big pre-op meeting I had at the hospital earlier this week. So, while I count down the days, I also have this to continually remind me of what’s next.

(One circle is just above the other, like this : and I was saying to Lori that there’s a ‘colon’ joke in there somewhere. I just haven’t figured it out yet)

So yes, we met with various folks at the hospital in Winnipeg about what’s coming. There was the usual re-checking of my vitals as well as weight and height. There was a questionnaire about my general health. Side note: I love that they keep re-checking my height. I feel like, at 42, I’ve done about all the growing I’m gonna do. (I’m sure when Lori proofreads this post she’ll tell me why it’s necessary). We also met the NSWOC or Nurse Specialized in Wound, Ostomy, and Continence. She was very positive and understanding, and walked us through what life would be like on the other side of surgery. I’ll get a lot of ‘in-house’ training in the days after surgery, and afterward some visits at home by a home care nurse.

I’m sure I’ll have a lot more to say about life with a colostomy in the weeks to come. The NSWOC also added, as an aside to Lori, that maybe she’d be willing to learn these care procedures as well, in time. We grinned at each other, because, well, Lori already handles this kind of thing professionally. As a home care nurse! But, we’d agreed at the outset of this journey to keep her status as a medical professional quiet. We certainly aren’t going to lie, but for the most part there’s been no need for it to come up, either. When she’s in the room with me for a meeting or consultation she wants to be my wife first, and not accidentally change the way we’re spoken to or dealt with.

(I have some experience on the other side of this scenario, from when we went into the hospital for Lori to have our babies; at the time, the other nurses were her co-workers, so they tended to slip into work lingo with one another and leave me completely out of the loop with what was going on)

After the NSWOC we met the anaesthetist, who got more into the mechanics of the surgery itself and what they’d be doing to knock me out. I’m talking in sort of a casual, offhand way about these meetings but the truth is that I was pretty tense for good chunks of them; obviously all of this was a lot to process (how many times have I said that in the past ten months?) and some of the information I could barely face directly.

So. Things are more-or-less in place for this coming Thursday. I’m feeling calm-ish, but also sighing heavily every few minutes because I’m thinking too far ahead and trying to reset and come back to the present.

I want to take this moment to once again thank everyone who goes out of their way to comment on the blog, whether online or in-person; thank you all for the encouragement you’ve offered. Kindly spare a prayer or a thought for me as I embark upon this difficult leg of the journey, and please do the same for my family as they support me and we all try to figure out life after surgery.

Oh, and uh, don’t expect a blog entry next week.

As I write this there are eleven days remaining until my surgery. I’ve been preparing by reading materials from the Manitoba Ostomy Program, which addressed a lot of common questions and went over daily life in a plain, matter-of-fact kind of way. I’ve also been preparing by downloading movies and TV shows at 4 a.m., because I had a nasty head cold and couldn’t sleep. I’ve had at least one moment of total, overwhelming “I can’t do this” while emptying the cat’s litter tray. And we’ve been making logistical preparations for the kids and the dog.

(I’ve just realized that there’s an entire day where nobody is looking in on the cat. I better get that sorted!)

It isn’t the only thing on our minds but it’s also never far away. As with other times in this journey, I’m trying to focus on the things I can control, and stay present for the other moments of my life. This journal actually makes that slightly more difficult — while outdoors with my kids this afternoon, I kept falling into a mental loop. It went like this:

1. “Whoops, my mind’s wandering, but it’s probably better to pay attention and stay present for their fun and enrichment.”
2. “Hm, what if I wrote about that struggle in my journal later? I could say…”
3. [return to 1]

---

The CancerCare Manitoba Foundation donation blitz that used my story and pictures seems to have wound down. (That link probably won’t feature me forever, so if you’re reading this in the future it likely doesn’t feature me anymore. But right now it does!) Overall, I’m happy with the experience; they made good use of what I supplied and were very attentive to our feedback on drafts of the fundraising emails. Because I am on the CCMB mailing list already, I was also part of of the mass-mailing of my own story; it was a little funny to get messages like this:

Other opportunities to help the Foundation may come along in the future and I’ll definitely consider them as they arise. Right now, it’s a little tough to think beyond this month. I keep saying I want to help the next person with a diagnosis, but what I’m specifically thinking of is…medicated wipes. When I was undergoing radiation treatments last summer, trips to the bathroom became very painful. Some of the discomfort was mitigated by these nice medicated wipes that the radiation techs started giving me before I’d head home. They weren’t stingy with the packages either; I’d get a couple every time I asked.

Look, it’s minor and might sound silly, but it was a way that helped me feel like I mattered to the folks looking after my treatments. It was something above-and-beyond the reason I was there each day. The Foundation talks a lot about your donations funding research in the province, and that’s great! But I also know those packages of wipes have got to come from somewhere too. Someone somewhere paid for them, and I was very grateful to get them for free to make my own journey a little easier.

So, if my story gets someone to chip in even a few bucks, and those few bucks turn into a package of wipes that makes someone else’s journey easier — I’m all for it.

What a week!

On Monday I got a call from my surgeon’s office, wondering why my Sigmoidoscopy was so late in the month. “The endoscopy people said February 18th was the next available date,” I said. That’s too late, I was told. We have February 20th set aside as your surgery date.

Whoa, okay. That was news to me. The person on the phone said they’d see what they could do about moving it up.

Tuesday, they phoned back. Could I possibly get to the Victoria General Hospital in Winnipeg at 7:15 a.m. Friday? Well, back in the beginning of this whole journey, Lori and I made an agreement that we would Make Whatever Work and that I should accept dates as they come, even if I’m not quite sure. So I said yes, fine.

And so, Thursday night, I said goodnight to the kids and my wife and hopped in the car to drive to a motel in Winnipeg. (Yes, I have family in the city who are probably reading this, but to my knowledge none of you are very conveniently close to that hospital, and anyway, I had some preparations to make that I didn’t want to do in someone else’s home.) I’ve booked and checked into hotels plenty of times in my adult life but I realized that this is actually the first time I’ve ever done it alone. I’ve always been with someone else when I’ve travelled overnight, OR I’ve been on a bus and just slept in transit. The quiet in my room was unnerving. I kept the TV on for the noise.

Early the next morning I made my preparations and then made my way to the hospital. Sedation is optional for a sigmoidoscopy and I chose not to have it, on the grounds that I didn’t have anyone to drive me afterward so I couldn’t have sedation anyway. It was a lot of hurry-up-and-wait, and then I was being wheeled into the room. Suffice it to say that the procedure was very uncomfortable but mercifully brief. Then, while I was still collecting myself, my future surgeon hit me with the rest.

• The CT showed the cancer hasn’t spread (hooray!!) but there is a lymph node in the region that’s concerning.
• The MRI showed an “incomplete” response to treatments, which sounds bad but just means the treatments didn’t completely eliminate the cancer on their own. It’s common.
• The scope that was just done confirmed that my cancer is, still, sitting right next to the *ahem* ‘exit muscle’. So the whole thing’s got to come out and get closed up. They’ll also take out that troublesome lymph node I guess.
• So it’s confirmed: I’m getting a permanent ostomy in just a couple of weeks.

Then he rattled off a series of potential complications from the surgery, and while I was still reeling from all this information I had a consent form dropped into my lap to authorize that I wanted the procedure done. I was stunned. I mean, I’ve said all along that if this surgery is what’s required to continue living, I’m going to do it, but it’s another thing to have it go from hypothetical to reality. I would have really wanted a minute to just sit with the decision, but I really, I was always going to sign the paper. So, I did.

I was promptly wheeled back out so I could get dressed again, wait for the scope report to print, and have a cry while I texted Lori updates. It was a heavy time.

So, that’s happening. I expect to get more details soon about surgery prep, and of course Lori and I have to figure out family logistics for the 4-5 days I’ll be in hospital. I’ve written before about being unable to really think or learn about life with a colostomy bag, but by degrees since Friday I’ve been having more questions and getting acquainted with the idea. We also had a good chat with Cassidy so that she had plenty of time to come up with questions or concerns of her own, which she has. Her processing has helped my own as well.

Relatedly, something about me is that I tend to get stuck on a particular image or idea for weeks or months at a time, like when I couldn’t stop thinking about the Mad Men intro. It’s not that I’m constantly obsessing, it’s just a thing that my brain will drift toward when I’m bored or have an idle moment. Lately it’s been retro video games. It’s no secret that I love games, and I enjoy keeping up with modern ones (the new Indiana Jones game is great!) But when I’ve been unable to play for a period of time I start fervently wishing I was in front of my old CRT TV playing PlayStation or something. The picture above was taken at home after returning from my trip to Winnipeg on Friday — I needed, just for a little while, to play something familiar and comforting.

So that’s obviously a part of why this idea appeals so much — I’m treading through so much unfamiliar territory in my life that it makes sense I’d be drawn to something where I have control of what’s going on. I’m also pretty sure that it appeals to me because the time in my life when “Retro” was “Brand New” — i.e., the mid-90s-to-early-00’s — seems so much simpler in retrospect. Go to class, see my friends, come home and relax in the warm glow of a tube TV and Final Fantasy IX or A Link To The Past. I know I’m never going to get that back, and I thought I was at peace with that. Maybe I’m not, or maybe every previous chapter of your life seems less complicated than your current one.

Still, I read a great post the other day by a terminally ill person saying that you don’t actually have to stare at the horrors in your life all the time. Confront them as necessary, but make sure that between those times you are improving your own life or the lives of those around you. So that’s why it gives me so much joy to look at this picture I took, on Saturday, of Avery feeding my Dad’s neighbor dogs:

Today, a shortish update.

This week I had my follow-up CT and MRI scans done. The CT was on Monday and done locally. The MRI was on Friday and done in Winnipeg, at the St. Boniface hospital. This is the hospital my surgeon works out of, and he was adamant that the MRI be done there as well. Not sure why! We plan to ask him later.

If you’ve never had a CT scan, allow me to offer a brief description! First you are asked to get down to your undies and socks in a small change area, and put on a hospital gown instead. I’m not thrilled about the gowns because I can never tie them up properly. Then you’re led into the room and made to lay on a table in front of a smallish, ring-shaped machine. The tech starts an IV with a “contrast fluid” that’s meant to make certain parts of you show up more clearly on the imaging. Also, they’ll warn you that it will 1.) make you feel kinda warm and 2.)make you feel like you’ve peed your pants when in fact you have not.

Then they leave the room and the table moves to put the parts that need imaging into the centre of the ring. A pre-recorded voice instructed me when to breathe, hold, and exhale. And in just a few minutes it was done! Really, just when I was settling my mind in for the long haul, so I was quite surprised when the tech re-entered the room and said we were all finished.

No long-term side effects from the contrast fluid, though I was advised to drink plenty of water over the next day or two in order to flush the contrast from my system. I’d meant to take myself out for breakfast that day (to reward myself for being a Big Brave Boy). However, I needed to get back home because my sister-in-law was watching the kids who would otherwise have been unsupervised (not ideal).

If you’ve never had an MRI before, allow me to offer a brief description! It’s a lot like the CT, only the machine is a lot bigger, noisier, dangerous, and slower. Because you see, it works with extremely powerful magnets! I was asked three different times — one paper survey, two nurses — about any potential metals in my body as the result of injuries or implants. It isn’t rational, but I start to worry that I might secretly have metal in my body that I just haven’t remembered (I don’t). The process of preparing and imaging took quite a bit longer, not to mention the drive time. But the nurses were very pleasant and it turns out I have very little problem with confined spaces, so the experience wasn’t particularly stressful.

You have time to let your mind wander in an MRI, and in this one there were two things I really wanted to know, but I’ll sadly never get the answers. One was: how did that small dark smudge get on the inside of the machine? It almost looked like a fingerprint. What was the story there? And the second, which I noticed midway through the imaging, was: how did that tiny ball bearing get there? It was stuck to the inside of the machine because of magnetism, but where is it from? Is it important? Who knows.

In both cases I was assured that my doctors would get the results in less than a week, but I don’t think I’ll know any more until either the chemo doc visit in early February, or meeting the surgeon after that. So we continue to wait and hope for good outcomes. In the meantime, like I’ve said before: we try not to let our minds wander to dark places, and instead do things that bring you calm and joy, like LEGOs.

This week, we found the waiting to be difficult. The days have been full of normal things; work, school for the kids, pickups and dropoffs at extra-curriculars, etc. And they haven’t been bad at all. But Lori and I have both found, in the quiet moments, a tendency to worry.

It actually hadn’t occurred to me to worry about my test results before this last week. I’ve probably written before about my over-optimistic tendencies — the belief that things like this will just work out. The treatments worked, I tell myself. Why wouldn’t they have? And it wasn’t until this past week, spurred on by a minor but persistent sort of ache in my core muscles, that I finally had the thought:

well, what if the treatments didn’t work?

Or they did, but not enough, and things have spread. Or any number of other worrisome scenarios. It wasn’t a shattering thought, but it is difficult for me to acknowledge and face some of the bad outcomes that might be in my future.

The tummyache went away, and I’m still optimistic overall. Mostly we’re kind of at a place of wanting to get on with it. Which I will, with a CT scan tomorrow morning, followed by an MRI at the end of the week.

It’s probably gonna be fine. I’m sure it will. Well, mostly.

Changing the subject; sometimes, since my diagnosis, people have asked if I’ve ‘lost weight’. It’s meant as a compliment but I don’t know what folks are seeing — I mean, you looked at the comparison photos a couple of posts ago, and the scales at the hospitals always come out pretty much the same. I appreciate that folks are trying to be nice! But actually, as I would reply to people, I’m not supposed to be losing weight during this time. Visibly losing weight would actually be concerning; the doctors and my dietitian agreed at the outset of this journey that losing weight should not be a goal as my body will need its reserves of energy to help in getting through treatments.

I will never get upset to anyone’s face about this comment, but let’s be honest; if I’d lost my hair and looked ‘sicker’ it would not be something folks would offer as a compliment. And I’ll be honest again and say I’ve definitely stepped in this one myself; a few years ago I ran into an acquaintance after not seeing them for some time, and since they were noticeably thinner I asked, as a compliment, “have you lost weight?”

“Yes, stomach cancer will do that to you,” came the reply. And I felt…not very good. They weren’t upset with me, but their tone was so resigned that I got the sense this was something that came up a lot for them. And it wasn’t anything to celebrate.

So! Let’s agree not to comment on the body sizes of cancer patients! Actually, let’s go one step further and agree not to comment on the body sizes of other people, like, at all. We don’t really know what journey somebody’s on, and it just doesn’t seem like a helpful thing to focus on!