A little bit about you:
Name: Ryan Blenkiron
City: Fergus, ON
What was/is your diagnosis?
Non-Hodgkin’s Lymphoma (Diffuse Large B Cell)
What year was it? What was your age at the time?
August 2017, age 33.
What is something you’ve done that you’re really proud of?
I’ve re-prioritized my time and energy so that I’m (much more) happy with how I spend them.
What is a top item on your life to do list?
Do something cooler than beat cancer. Spread awareness and community to others, especially in the young adult cancer space.
What are your hobbies?
As a working parent to three under 10, I don’t have a lot of time for hobbies. However, I do enjoy creative things like photography, writing, and art. I could spend a lot of time just discussing and talking, though. I love it.
What was your life like before your diagnosis?
I was living what I refer to as a “template life” wherein I hit several typical milestones and was allowing my career to occupy a rather large part of my life. I was happy enough, though, and pretty oblivious to anything different.
How did you find out you were sick? What led to your diagnosis?
I had several concurrent issues — back pain with flashes of abdominal numbness, intense exhaustion, hot flashes — and I was building a case to bring to my family doctor to hopefully get to the bottom of it all! My youngest was about 16-months-old, so many things could have been simply motherhood “symptoms.”
My body had plans to expedite the process and I landed in the ER with very limited lung capacity due to pleural effusion since 1.5L of liquid had semi-collapsed my left lung. I was put on antibiotics (in case it was pneumonia), an inhaler (in case it was inflammatory), and had a CT scan scheduled for a couple days later (in case it was something else).
Soon after, the results were in and the netting of my thoracic lymph nodes were cancerous and had created a mass that wrapped around my aorta from lung to kidney. The liquid in my lung cavity was my body’s natural reaction to the tumour, and the pain in my back was actually a branch of the tumour growing into one of my vertebrae and pinching the nerves.
What were your first thoughts when diagnosed?
I’m too young to die.
In which hospitals were you treated?
After tests done in a variety of places in southwestern Ontario, I settled into seeing a hematology oncologist and having treatment at the Grand River Regional Cancer Centre in Kitchener, ON.
What did your treatment consist of?
An exact diagnosis was difficult for my oncology team since my cancer looked and behaved uniquely in some ways. So, before even knowing what chemo regimen I was going to do, I was put on a session of high dose steroids that took a lot of the pain away. Soon after, I started R-CHOP chemo protocol, and because Rituximab can cause tumour lysis and holds the risk of acute allergic reaction, my first infusion was elongated to eight hours and included a five-day stay in the oncology ward to be sure I could handle it without adverse reaction. From there, it was a four-hour IV drip in the chemo clinic every three weeks.
I had been looking forward to reading or drawing during those visits, however the anti-histamines they gave me at the beginning would make me drowsy for the rest of the day. As well, since day one to five of R-CHOP calls for high-dose steroids, sleep eluded me and my brain went a mile-a-minute.
On day six, I crashed for a few days. Nausea, joint pain and neuropathy accumulated with each session. Between rounds four and five, I ended up with neutropenia and started taking Neupogen, which caused incredible bone pain. I also had supplementary treatments throughout for symptoms like a sharp increase of liver enzymes, insulin intolerance, gut issues, clots around my PICC line, etc., etc., etc.
There was one chemo day that I had 16 pills, four IVs, and four self-injections. I won’t even get into how many X-rays and scans (ultrasounds, CT, MRI, MUGA, nuclear bone) I had over that year or so!
I spent a lot of time resting and passing the time with anti-cognitive activities like watching TV, cell phone games, and listening to music. There were countless frustrating times when I wanted to do something “bigger,” but ended up with complete exhaustion or sensory overload or a complete lack of cognitive ability to do it.
All of my energy was focused on surviving and on keeping track of my kids’ emotions and education. Watching my husband and in-laws take on heaps of responsibilities I couldn’t manage gave me a lot of guilt. There were days I let myself go down the dark roads into what cancer might mean for me, and what might change for me afterwards. There were a lot of unknowns to process during treatment; it was harder than the actual treatment itself.
What is your current medical status?
I’m in remission. For my cancer, I’m told two years in remission is a big milestone and significantly improves prognosis. After five years, it’s considered cured.
Life after cancer:
How is life different for you now post-diagnosis?
Since treatment ended, I’ve gone through ups and downs with my body. An exercise program called Well-Fit at the University of Waterloo was able to help me regain control and respect for my body. Otherwise, it’s been liver disease monitoring, gluten and dairy intolerance, high cholesterol, pre-diabetes, cognitive recovery, sensory overload, a neurovisual midline shift, and Polycystic Ovarian Syndrome. Not to mention the fatigue that is still woven into my day-to-day two years later.
Cognitively, I was a stranger to myself. I had work hardening sessions at occupational therapy to help me get ready to return to work. It really came down to practice. I’m not sure I’ll ever get back to where I was, but I’m doing ok. This was an emotional toll for a long time; a huge part of my identity was wrapped up in my brain’s abilities, and it felt impossible to get back.
For a long span after treatment, my family was upended and I was utterly emotionally lost. My marriage was going the wrong way, I struggled with owing a debt of gratitude to my supporters that I would never be able to settle, and I was only able to handle a fraction of the “life” I could before. My social life changed as I was too tired and too overwhelmed and cognitively slower than I felt comfortable with. The babysitting and cleaning offers dried up when I needed them the most. Finances got tight. I wanted to run away and be off-grid and on my own so often, but I couldn’t leave my kids and leave my husband hanging like that. But I needed to talk about it and deal with it.
This is where YACC really started to play a role in my life. I went to therapy, too. I’m in a much different place now because of these two things.
What is/was the toughest part about having cancer as a young adult?
Parenting, and having to redefine what “success” means to me.
What really helped you to keep going?
My husband and I planned a road trip through the States for when treatment was done. It was nice to have something exciting to look forward to. My kids were the highlight of my day and I got to spend more quality time with them than I had leading up to cancer.
What kept you busy during treatment?
Steroid days were spent business-planning and going 100mph. The rest, I slept and watched TV and sat outside. Chemo fog meant I couldn’t focus long enough to read a book or listen to a podcast, and my fingers were too numb from neuropathy to do handicrafts, so things were fairly dull and quiet. Lots of sleeping!
How did you get connected to Young Adult Cancer Canada?
A mutual friend connected me with a YACCer, then she added me to the private Facebook group. Since then, I’ve attended a Survivor Conference and am in the YACCtivist program.
Do you feel isolated from your peers since your diagnosis? If so, how does that affect you?
I did, and I do still. Since returning to work, I’ve had practice socializing again and speaking about anything-but-cancer with coworkers. As well, the friends that have stuck it out treat me fairly “normally.” The days I feel isolated in my own thoughts and sadness and grief, I turn inward and I only speak to other survivors.
Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
Boiled down, I don’t have the energy for all of the relationships I had before, so if they’re not invigorating or maintained, I simply let them go. It took me a while to get to this point. When you’re diagnosed, age-old friends come out of the woodwork and it’s overwhelming. Then, I think a lot of friends felt helpless and uncomfortable so they fizzled out. Budgeting my energy was key from the beginning. Thankfully, because of being a parent, this isn’t an entirely new concept!
How has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
The hardest part of diagnosis was making sure I told my oldest before he heard it from someone else. He was six at the time, and inquisitive, and increasingly scientific. It ended up being a conversation that was fairly matter-of-fact and although it scared him at first, it wasn’t long before we had an understanding. I’ve kept him in the loop since, and have answered all of his questions. My middle son was three and utterly confused all the time about my sudden inability to coddle him! He does remember me without hair, though. My daughter was only a little over one, so she had/has no idea.
I was able to get a photographer friend to document a few things for me so I can put a book together. I’d love to have it for myself, of course, but I’d love it as a tool for explaining my experience to my kids later.
My parenting has changed in that I have changed my expectations of my kids in a big way. I don’t measure them by academic, athletic, or even social achievement, but by their kindness and resilience. I peel back life’s mysteries any chance I can get, and encourage more “discourse” on everyday topics. I try to nudge them to know their mental and emotional needs.
I also have much less stamina for parenting. I believe parenting during recovery prolongs your recovery. During treatment, I was still the custodian of their emotions and advocate for their needs at school. My husband would defer to me often on parenting decisions. I hold a lot of guilt for my physical absence during that time.
How has your cancer experience affected your body image, and your relationship to your body?
I’ve been “let down” by my body quite a lot over my 35 years, so I simply roll my eyes when something else pops up. However, my cancer journey was the first time in a decade my body wasn’t “on loan” to babies. I like being more in charge now, and more importantly, I have realized I am not my body.
What are some lifestyle changes you’ve made since your diagnosis?
I try to be less busy, I’ve made some diet changes to help some symptoms, and I’ve started meditation and breathing. Still working on it!
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
It sucks! Connect with others who “get it.” Connect with them in-person if you can.
Are you interested in helping others facing cancer challenges?
- My Instagram Feed: https://www.instagram.com/girl.named.ryan/
- My Facebook Group: https://www.facebook.com/groups/adjustingmysails/
- My YACCtivist Profile: https://youngadultcancer.ca/yacctivist-ryan-blenkiron/
[Editor’s note: If you would like to get in touch with Ryan, send a message to [email protected] and we’ll forward it along!]