Name: Tori Zimmerman
City: Edmonton, AB
What was/is your diagnosis? Acute Myeloid Leukemia, MLL mutation
What year was it? What was your age at the time?
I was diagnosed on December 15, 2017; I was 23.
What is something you’ve done that you’re really proud of?
- I started playing piano when I was five-years-old. My grandfather had a beautiful wooden carved piano from 1878 that I inherited the year before. My dad was a musician and I looked up to him, so I wanted to learn to play music, too.
- After my dad passed away in 2016, I learned to ride a Harley. I’ve been on a Harley since I was six-months-old and it was always a dream to ride one on my own.
- I participated in the Light The Night walk for the fight against blood cancers on September 29, 2018 and my team and I raised over $3,500 for the Leukemia & Lymphoma Society of Canada to go towards research.
What is a top item on your life to do list?
To make a difference in the world.
What are your hobbies?
I love live music. There’s something soul touching about seeing a local band play in a grungy old-timers’ pub.
What was your life like before your diagnosis?
Busy. I was working full time at a law firm. My husband and I were planning on applying for a mortgage to buy our first home together.
How did you find out you were sick? What led to your diagnosis?
I was sick with the flu, then on December 14, I started to have chest pain from so much coughing. This became a major concern as my dad died from a major heart attack. I left work early and headed to the hospital. They did chest X-rays and bloodwork. After reviewing the bloodwork, the doctor told me I had to be transferred to the hematology unit at the University of Alberta Hospital. I had my first bone marrow biopsy the next morning and had my diagnosis within hours.
What were your first thoughts when diagnosed?
I was heartbroken for my mother. She just lost her husband of 40 years a year and a half earlier, and was now about to face a whole new world of hell.
I was heartbroken when I was told I’d never have children if I do survive. Not only was having children taken away from me, but it was taken away from my husband, Jacob.
I was heartbroken for my older brother, who couldn’t protect me from this.
In which hospitals were you treated?
University of Alberta (Edmonton)
Cross Cancer Institute (Edmonton)
Tom Baker Cancer Centre (Calgary)
What did your treatment consist of?
Four bone marrow biopsies. Four rounds of intense, heavy chemo. Two rounds of full body radiation. Allogenic stem cell transplant.
I was an inpatient at the U of A hospital for 29 days before I was discharged to out-patient status.
When it was discovered I needed a stem cell transplant because of the MLL mutation, my brother, Matthew, was first to be tested. With less than a 25 per cent chance of him being a match at all, we completely beat the odds and he was a perfect 10/10 match.
I spent 102 days in Calgary for my transplant and recovery. I lost over 35 lbs. I was literally just skin and bones; there was no fat left on my body. My face started to cave in. I couldn’t do anything on my own. I had GVHD of the skin. I had horrible and excruciatingly painful mouth and throat sores for months on end. I puked all day, every day, even when there was nothing left in my stomach.
I stayed positive during my battle, and I continue to stay positive. I had cancer, cancer did not have me. I refuse to lose this battle.
What is your current medical status?
Life after cancer:
How is life different for you now post diagnosis?
Different. I’m learning my new “normal” for my life. I took cancer for what it was. I don’t want people to feel sorry for me. I want to bring more awareness to leukemia and to educate more people on it.
I’ve been exercising and eating properly finally, so my weight is back to what it was before I was diagnosed.
I’ve learned who my true friends are throughout this journey. People leave when life gets ugly.
What is the toughest part about having cancer as a young adult?
Seeing other people continue to live their lives carefree, and now being treated differently by people.
What really helped you to keep going while you were sick?
My support system.
What kept you busy during treatment?
Reading. I like to keep my mind moving.
How are you connected with Young Adult Cancer Canada? How did it happen?
Found it online on Facebook.
Do you feel isolated from your peers since your diagnosis? If so, how does that affect you?
Yes and no. I know I’m unable to do certain things that my friends do, but my real friends make sure I’m always included and not isolated.
Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
From when I first went into the hospital to when I started chemo, it was less than 36 hours. There was absolutely no time for fertility options to be discussed. If I wanted the chance of survival, chemo needed to be started immediately.
Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
My husband and I have faced hurdles because of the cancer, but it has also made us stronger than ever.
It has also brought me closer with certain family members and friends. Some people leave when life gets ugly, some people invest themselves into you more.
How has your cancer experience affected your body image, and your relationship to your body?
It did at first when I lost all the weight. I was completely and utterly disgusted with the way I looked, especially when I lost all my hair. I hated myself. But I’m working at putting my weight back on; I’m happy with my body image now, and my hair is regrowing.
What are some lifestyle changes you’ve made since your diagnosis?
I invest my time with those who invest time in me. I realize life is too short to be pissed off all the time. People often ask me, “Are you angry?” My answer is simply, “No.” I’m being the best person I can be.
The most important lesson I’ve learned is to not let anything make you cold. Life isn’t fair, but I absolutely refuse to quit.
I focus on myself and my health. I focus on my relationships with the people who matter to me. I exercise, I eat healthy. I am happy. I was given a second chance at life, and I’m not going to waste it being pissed off.
Resources and recommendations:
Which books/movies/podcasts/TV shows/etc. would you recommend?
-The Perks of Being A Wallflower
-Tweak/We All Fall Down
-Any books by Ellen Hopkins (Everyone tells me these are depressing books, but I enjoy them.)
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
I attend Wellspring Edmonton.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
Expect nothing and appreciate everything.
Are you interested in helping others facing cancer challenges?
If you are interested in getting in touch with Tori, send a message to [email protected] and we’ll be happy to forward it along!
Visit Tori on Instagram: @tori.zimmerman