Hometown: Riverview, NB (currently living in Calgary, AB)
What was your diagnosis?
Hodgkin’s Lymphoma Stage 2a (bulky, nodular sclerosing)
What school did you attend?
St. Thomas University in Fredericton, NB – Journalism & Communications
What are your career goals?
To help others through writing and communications. Publish a book (someday!).
What is/was your occupation?
Writer, Researcher, Web Content Specialist
Your cancer experience:
How did you find out you were sick?
It started with a pain in my neck. Yes, my cancer was a literal pain in the neck. I thought it was a kink, but it got worse as the days went on. The pain moved towards my throat, swelled the skin on my neck, and made the veins in the left side of my chest pop out. I showed the weird veins to my mom and she freaked out and made a doctor’s appointment behind my back because I was outwardly refusing to go.
Upon first touch to my throat, the off-hours doctor said she felt something unusual. A CT scan two days later showed the pain and swelling was caused by a blood clot in my jugular vein. They sent me to the emergency room and another CT scan of my chest showed a 14 cm mass filling up my chest cavity, squeezing a main vein that leads out of my heart. I was in the hospital for four weeks until they got a proper diagnosis–it took a needle biopsy in my chest, mediastinal scope down through the throat, and surgical removal of a lymph node in my armpit to get enough active cells to make the official call of Hodgkin’s.
When was it?
June 2011; I was 25 years old.
In which hospital were you treated?
Moncton Hospital in Moncton, NB.
At what level of education were you at diagnosis?
I was two years out of university, and seven weeks into a brand new salaried office job.
What were your first thoughts when diagnosed?
“It all makes sense now.”
How did your family react?
They were completely and utterly horrified. A few months prior I had been working as a personal fitness trainer in Toronto. Everyone thought I was the image of health and fitness. My parents were both beside my bed when my family doctor, a long-time family friend, said there was a large mass in my chest. The first thing I remember is my dad jumping to his feet and grabbing my shoulder. I’m the youngest in my family, so I just got babied even more. In retrospect, their hysteria was a sign of their love for me, but at the time, the intensity of their stress and emotions had a negative effect on my well-being.
How did your friends react?
I had a group of friends that really stood up to the plate during my illness and I’d be lost without them. I’m a naturally social person, so it was a huge hit to not be able to go out and party anymore. There were a lot of Friday nights spent in bed feeling sorry for myself. Many people just cut off contact with me because they knew I couldn’t go out to the bar with them, and that’s the only social interaction we really ever had before diagnosis. However, that core group of friends were there for coffee dates on my good nights. They still invited me to every party regardless, and were genuinely excited to see me on the rare occasion that I showed up–wig and all.
What did your treatment consist of?
I did six months of chemotherapy–the standard procedure for Hodgkin’s–and no radiation. Thanks to a PET scan after chemo, they were able to identify a three-centimetre residual mass as non-cancerous, so they didn’t bother radiating. It was also deemed too risky as it would have gone through breast and heart tissue.
The first three months were ABVD–a classic Hodkgin’s cocktail of four different drugs. In all honesty, with the 10 days of self-administered Neupogen shots, and regular Zofran and Maxeran, I didn’t feel all too bad. Just incredibly fatigued and gross the week of chemo, and then fine in my week off. I was in the chemo chair every two weeks for treatment. My hair only thinned a little, and I was able to maintain a decent weight even with the Dexamethasone steroids.
THEN, exactly three months in, I got pulmonary toxicity from the Bleomycin chemo. It started with a small dry cough on the Friday of Thanksgiving weekend, and by Monday I couldn’t get off the couch without wheezing. Thankfully, I was already scheduled to see my oncologist that Tuesday, and he had me on Prednisone right away. I was switched to a harsher AVD/COPP cocktail which threw me on my butt. My hair fell out right away and my stints stuck in bed were much longer.
What is your current medical status?
Cancer-free since January 30, 2012! Wahoo! My last clear chest X-ray came back just two weeks ago.
How is life different for you now post diagnosis?
Everything is different. Everything. Physically, my energy is still up and down. Some days I feel 110 per cent, and the next day I’m flat in bed all day with that familiar feeling of fatigue. I have to be more careful about over-exerting myself. Naps are my new best friend.
Emotionally, I’m kind of a mess (haha). I’ve seen a therapist who believed I have post-traumatic stress. I’m on anti-anxiety medication. All of this sounds bad, but I’m still proud of myself for taking the steps to get help and find ways to feel better. It’s really hard to step out of the dark cancer hole that many of us find comfort in.
Socially, I’m fantastic. Having to stay at home for months really pushed me out the door once I started feeling better. I hardly ever turn down invitations now and I’ve made really good friends as a result of all I’ve been through.
What is the toughest part of your challenge?
Losing the sense of invincibility I had before. I often miss that blissful naivety. Not a day goes by that I don’t feel the lymph nodes in my neck and wonder which one could be cancerous.
What was the best lesson you took away from your challenge?
The big picture. It’s hard to get wrapped up in the minute problems of everyday life when I am so happy to still be alive. I really don’t care if the bus is late or if I drop an egg on the floor. I also appreciate personal relationships so much more. I think relationships are the richest part of our existence here on earth.
What really motivated you to keep going while you were sick?
Laughter. No matter how sucky things get, there is always a comedian out there waiting to make me laugh.
What are your thoughts and feelings about your illness now? Have they changed since before your diagnosis?
When I was going through treatment, I heard a lot of people say “chemo is the easy part.” I didn’t quite get it, but in retrospect it makes perfect sense. Living in the cancer bubble was safe–even enjoyable, at times. But being thrust back into the real world having gone through this traumatic experience, and then being expected to act “normal” again, is really hard. I guess if anything, I recognize that illness can be a life-long struggle, that cancer can be a chronic disease, and that belief in a “normal” is just a sham.
What are some preventative measures that people can take to lower their risk of having an experience like yours?
Be honest. If you feel crappy and don’t want to take visitors, say so. A lot of the stress and fatigue that resulted from my experience came from my bowing down to the demands of others when I should have been more forthcoming about what I needed.
Also, don’t eat any foods you enjoy in the infusion room. Once you eat a food while receiving chemo, you’ll never want to eat it again. I miss donairs.
Did you attend any support groups during your challenge?
Unfortunately there were no support groups that applied to me in Moncton, BUT THERE SHOULD BE!
How are you connected with Young Adult Cancer Canada?
I attended Retreat Yourself East 2012 in Cape Breton. It was life changing. Really. I went six months after treatment during one of the hardest periods of my recovery. Everything changed for the better after that retreat and I have YACC to thank for the good place I like to think I am in today.
Email email@example.com if you want to connect with Susie!