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.
Avery watching TV in a pose that does not look at all comfortable.
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.
The cat and dog decide whether they should allow me back into the house.
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.
Our dog, acting in his capacity as Neighborhood Watch.
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.
A picture of the family waiting area at St. Boniface Hospital. Every surgery patient is assigned a number and well-wishers can track progress with a timeline displayed on a monitor.
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.
The windows of my ward actually had a nice view of downtown Winnipeg, though I wasn’t always in a headspace to really appreciate it.
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 🙂
