oops, I (over)did it again
a lot is happening!
It’s been a good few months since I published anything, but I promise, it’s all been for good reasons!
That being said, I girlbossed a bit too close to the sun in the past two months and have collapsed into a puddle of exhaustion with a single brain cell floating along the surface. My body keeps trying to get sick (I keep getting what feel like “half colds”) and my post op pain from my hysterectomy has unfortunately gotten worse. I’m trying my best to slow down without braking so hard I flip over my own handlebars.
I have a lot of writing planned out for the rest of the year, but for now, please enjoy a list of all of the cool and wonderful opportunities that have come my way in the past few months. That sentence feels strange to type- I am not often blessed with genuinely good news, and I promise you the novelty is not lost on me.
1. Terry Fox
In late April, I was invited to give a talk to the Terry Fox Foundation & Terry Fox Research Institute’s marketing teams at their annual meeting, and it was really, really wonderful. I quite enjoy working with like minded, down to earth people, and that’s exactly what I got the opportunity to do.
I presented my story, talked about what it was like to be diagnosed with “The Terry Fox Cancer”, and had a few slides on the negative effects of cancer on my career. I felt incredibly listened to, and we had some really in depth conversations about the importance of sarcoma specific research & funding. I got to keep my leg (unlike Terry), but I did unfortunately receive the exact same chemotherapy protocol he would have in the late 70s & early 80s. Things are changing, but sarcoma research still deserves so much more.
I’m starting to get a little more picky with who I spend my time and effort on when it comes to advocacy, and I’m always overjoyed to work with any of the multiple Terry Fox organizations. I’ve been a patient working group member for the Marathon of Hope Cancer Center Network for the past nine months or so, and have really enjoyed getting to work on projects related to patient advocacy and precision medicine in Canada. I’ve written a story for them that you can read here about my story, and my experience with having my genomes sequenced after my recurrence.
2. A Fresh Start
In early May, my partner & I (and our two cat-children) moved into a new unit within our same apartment building on a bit of a whim. We were offered the space, which is bigger and includes an entire yard, because our old unit needed a lot of work done. As sad as it was to leave our first place together (and Edward’s first place by himself), a fresh start has been really good for us.
The actual move was a lot of work physically, but I really surprised myself with how much I was able to do. I definitely pushed myself too far some days, but I’m getting a better idea of what my physical limits are, I’m happy to report that they’re increasing slowly as the months go on.
I’ve been spending a lot of time in the garden, and soaking up the sun which has been incredible after so many years without our own outdoor space. The sun hits our patio perfectly every afternoon, so I’ve been indulging in what I have deemed “lizard time” (sitting in the sun silently without my phone).
We’re growing a lot of herbs, some tomatoes, some pretty flowers and got ourselves two really cute red huckleberry bushes. I’m excited to dive into the world of gardening for the first time as an adult, and not just as a child weeding machine for my mom & grandparents (love you, mom). I’ve had a lot of fun reading up on native plants, painting little labels, and getting my hands into the dirt with my pals.
3. A Casual Organ Removal
I also finally had my hysterectomy, which had a bit of an unexpected outcome.
They found no evidence of endometriosis, a disease I’d been told I “almost positively have” for about a decade. Instead, they predict that the pathology will come back with Adenomyosis instead- a condition where the uterine lining grows within the muscles of the uterus itself. It’s cured with a hysterectomy, so if that does end up being my diagnosis, we’ve cured my pelvic pain, which still feels crazy to say. Endometriosis isn’t curable, so I had spent a good amount of years trying to prepare myself for a life full of chronic pain, and now there’s a really good chance that I won’t have to face that at all.
There’s also a chance that the pathology comes back perfectly normal, and that my pain continues with no known reason. It’s a small chance, but it’s not impossible, and would result in me having to go to a pain specialist, which I really don’t want to do. I have enough doctors on my roster as it is.
The surgery itself was very uncomplicated, and I’m left with four small scars the diameter of dimes on my tummy. I only had to stay in the hospital for one night, which feels crazy short to me after all of my other procedures.
I’m still (supposed to be) resting a ton, even though I feel better now than I did going into the surgery. I’m not supposed to lift anything over 10 pounds, not supposed to push or pull anything heavy, and can’t swim or submerge fully into water for another few weeks. I’ve been trying to take it slow, but I am notoriously bad at taking a pause.
I’ve been feeling a lot better and lighter since surgery, though. I feel like someone removed a large, heavy grapefruit from my abdomen. I no longer feel like I’m being stabbed in my bladder when I need to pee. I’ve been bloated, which is normal, but nowhere near the amount of bloated that I was before. I’m not feeling insane pelvic pressure constantly. I feel so much more free. Even if I don’t end up with an Adenomyosis diagnosis, I’m really happy with the fact that I had this surgery done- judging by the way my body feels now, it was an incredible decision no matter what.
4. A Last Minute Radio Interview
I also was invited to do a CBC Radio interview with Young Adult Cancer Canada, which was such a unique experience. We discussed the realities of being diagnosed with such a life altering disease so young, and how peer connection has been a really important part of my healing. You can listen to the recording here, if you’d like!
It was my first radio interview, and it was a really enjoyable experience. I’m glad that I’m comfortable public speaking, because I think it would have been very nerve wracking otherwise. I’m happy to see larger Canadian news outlets giving space to the stories of AYAs experiencing cancer- if I would have seen representation like this when I was diagnosed, I know I would have felt much less alone.
5. A Gift to 2022 Me
I also was given the opportunity to speak about my experience as an Orthopedic Oncology Reconstruction Surgery Patient at Vancouver General Hospital last week.
This opportunity was such a gift (as much as it was also a lot of work). I got to talk about my experience staying on orthopedic recovery floors as an oncology patient, and how orthopedic oncology patients are a lot different than the usual orthopedic patients. I discussed the best ways to treat oncology patients, some of the specific hardships we face, and some of the experiences I’d had on the orthopedic floor at VGH specifically.
The presentation itself was really well received- even though I was the last presenter of the day, everyone was engaged, respectful and grateful to hear my perspective, which is all I can ask for. I had a lot of nurses come up to me afterwards to ask additional questions or thank me personally, which made me feel really valued, and I’ve been invited back to help with other ortho education activities in the future.
This was the largest presentation I’ve given yet (roughly 80 people) and it was so much fun (which I know sounds crazy to say). I really enjoy getting to work face to face with the people directly in charge of caring for cancer patients, and present them with an opportunity to engage with a patient outside of a hospital setting.
All of that aside…
Not everything is perfect over here; that would just be unsettling at this point. My thyroid has decided to grow another nodule that’s big enough to need a biopsy in late June. I’ve had one before, and the biopsy itself was miserable, but the prognosis was great. Thyroid nodules are super common, and most people don’t know they have them, but I know *way* too much about my body from my quarterly CT scans, where a lot of benign lumps and bumps tend to show up. The last biopsy came back totally fine, and we expect this one to as well, but we do unfortunately still have to stab a huge needle into my neck while I’m fully awake, out of an abundance of caution.
I am ready for a nap (and then a meal, and then probably another nap). Managing my chronic fatigue after treatment has been really difficult, especially when it worsens after surgery. Add on the fact that I’ve been presented with so many exciting, time sensitive opportunities, and it’s a recipe for a sore, noodle-legged, exhausted disaster.
Taking on interviews, presentations and writing opportunities gives me a little taste of normalcy; a nostalgic sliver of what it was like when I was well enough to work- but it also is a stark reminder of how much more healing I have to do.
I have a few more (less pressing and less time consuming) opportunities lined up for the rest of this year, but for now I’m forcing myself to sit still, indulge in lizard time, and try my best to enjoy things while they’re good.