Hometown: Tillsonburg, ON (now London, ON)
What was your diagnosis? GIST
What schools did you attend?
Lakehead University, York University, Western University, and Fanshawe College.
What is your occupation? I am an ESL Teacher and a professional artist.
Your cancer experience
How did you find out you were sick? What led to your diagnosis?
I had been feeling tired for a few months. I was frustrated with my performance in soccer that summer, and sadly so was my team. I just couldn’t seem to keep up like I should be for a 19 year old. No matter how much extra training I did, I couldn’t seem to improve my endurance.
I headed off to Thunder Bay in the fall for my second year at Lakehead University. I loved res sports and signed up with my friends to play Ultimate Frisbee. On our way to a game one day, my sight went blank and I fell to the ground in a heap. I could still hear everything, but I couldn’t move or speak for a few long seconds. I had never passed out before. I remember thinking, “Am I dead?” Finally I was able to tell my friends I was okay. They carried me home and convinced me to go to the hospital. I would have rather gone to bed and tried to sleep it off, but I heeded their advice.
Well, it turned out that “sleeping it off” would have meant not waking up the next day. My hemoglobin was so low the nurse could not understand how I was still conscious and got really angry when I tried to go to the bathroom by myself! I got two pints of blood that night that saved my life.
After a stomach scope they found the source of the internal bleeding. A large bleeding ulcer in my stomach had formed. After five days in the hospital not eating or drinking anything, the ulcer healed enough for the doctors to do another stomach scope. This time they saw something “abnormal” and took a biopsy. They scheduled me for a CT scan later in the month and released me on the pretense that I was to keep to a clear liquid diet for another few weeks. Beef broth and Jell-O had never tasted so good!
The results from the CT Scan and biopsy were presented to me in November by a doctor with very poor beside manor. The result: A Gastrointestinal Stromal Tumor the size of my fist had grown inside me like a giant, unwelcome alien.
What year was it? What was your age at the time?
The diagnosis was in November 2006, and at the time I was 19 years old.
In which hospital(s) were you treated?
I was diagnosed at the Thunder Bay Regional Health Sciences Centre, surgery at University Hospital in London, and oncology at London Regional Cancer Center.
At what level of education were you at diagnosis?
Second year of university.
What were your first thoughts when diagnosed?
I was shock. Stunned. Taken completely off guard. Inside I was also pissed at how nonchalant the doctor was. He told me the news in the same tone of voice as ordering a pizza over the phone. “Obviously you need to have surgery. Would you like it done here or where you’re from?”
How did your family react?
At first, my mom FREAKED OUT! My dad did in his own quite way, too. And my poor younger brother’s brain just couldn’t handle it and literally couldn’t talk for two weeks.
Once the initial shock of it was over and we moved into the treatment stage, my mom became my amazing nurse, my dad became my advocate, and my brother became my in-house comedian. It really brought our family together.
How did your friends react? Were you treated differently, or did things remain the same?
Some friends hit the road so fast they left their shadows behind! Others slowly drifted from view. A few really stepped up to the plate and continued our friendship as if nothing had changed. Cancer has a way of helping you figure out who your real friends are.
What is your current medical status?
How is life different for you now post diagnosis?
Physically I will never be the same. Living life with half a stomach has some complications that they don’t warn you about beforehand. The lower portion of the stomach was removed with the tumor, which is where most of the stomach acid is secreted. The upside is that without much stomach acid, vomiting doesn’t burn, but the downside is I am not able to digest food well. This has led to a lot of life changes. My diet has changed completely. I used to live off of dairy products, but now I can’t tolerate them. I used to love meat, but I can only eat it in small portions otherwise I get really sick. I’ve decided to go modified vegetarian and just eat fish as my meat now, because it is much easier to digest. High fat and high sugar foods are really tough to absorb as well so I usually get sick from them. I take probiotics and PanOx (pancreatic enzymes and ox bile) to help (PanOx is also known as the “magic pill” in our house), but I still avoid those foods.
The lower portion of your stomach is also where you process B12. Without it you can become severely anemic. This we discovered the hard way about a year and a half after the surgery. Now I have to get B12 shots monthly to keep up. Sometimes this isn’t enough. Lately I’ve been experiencing B12 “crashes” where I have episodes of anemia between shots. I now have a B12 oral spray (because you can absorb Methylcobalamin — aka B12 — through the tissue in your mouth) to carry me between shots.
I’m also missing my pyloric valve, which regulates food moving from the stomach into the duodenum and small intestines. This means I have to be constantly aware of how I’m eating, what I’m eating, and what I’m planning to do after I’m eating otherwise I’ll get Post-Gastrectomy Syndrome or “Dumping Syndrome.” If I eat too fast, if the food is too liquidy, if I’m drinking too much with the food, if I’m eating the wrong kinds of food, if I’m eating too much food, or if I’m doing something physical after I could get really sick. What happens is undigested food moves into the duodenum and small intestines too fast and your body freaks out. The most notable side effects for me are extreme nausea and fatigue. This could happen 30 minutes after eating, or even four hours after eating. Magic recipe for dealing with it: PanOx, candied ginger, and rest. Works every time.
I am not able to do physical activity as much as I used to because my body does not recover as fast due to malabsorption. I used to identify myself as an athlete, but now physical activity is a weekly thing, not a daily one.
However, there are some benefits to the partial gastrectomies. I received two super powers: I don’t get hunger pains anymore and I can stop my hiccups just by thinking about it! Crazy, eh?
Emotionally I spent years not really dealing with it. It was easier to just keep moving and set short term goals. Also, I hated when people would pity me or look at me as if I might drop dead at any moment. I’ve learned to be strong for everyone else, removing the emotion from the facts when explaining my situation. I’ve gotten really good at making it sound like it’s not a big deal. What’s tough now is being discharged from the cancer clinic. Making long term goals is hard, debilitating at times. Now I have to deal with it, because somehow I made it out the other side and I wasn’t expecting that.
Spiritually, God used cancer in a really powerful way to bring me closer to him and make me a better person. He was with me through it all and still is.
What is the toughest part of your challenge?
Feeling isolated. Every cancer is unique, but this one is rare in people so young. I didn’t fit in at the cancer clinic where most people were much older and going through chemo or radiation. GISTs can’t be treated with chemo or radiation, so I didn’t have that in common. Being younger brings other kinds of life complications too that older cancer survivors wouldn’t understand. What if I never get married? Can I still have kids? How do I push through university if I’m not sure I’ll live to graduate?
I also felt isolated because most young people haven’t had to deal with a life changing medical catastrophe happening to them. My friends’ biggest worries at 19 were getting through exams, boyfriends/girlfriends, and what to do for a summer job. It was hard for them to know what to say, do, or think.
It was also isolating when the doctors weren’t helpful with my new post-cancer body. I was having all kinds of complications eating, but my oncologist, surgeon, and dietitians were no help at all. Through two different naturopathic doctors and my own research I was finally able to figure out how to live with a partial-gastrectomy.
What was the best lesson you took away from your challenge?
Life is short. Be thankful for every day you get.
What really motivated you to keep going while you were sick?
God, a family who cared, good friends, the Food Network, and Survivor Man.
What are your thoughts and feelings about your illness now? Have they changed since before your diagnosis?
Cancer isn’t just a “blip” in the span of your life; it affects you forever, but it doesn’t have to only affect you negatively. I am thankful for my experience with cancer. It has changed me, but mostly changed me for the better.
What are some preventative measures that people can take to lower their risk of having an experience like yours?
Even if you are in a small town or in university and there doesn’t seem to be anyone around who can relate, seek out help from a councilor, social worker, etc. You need it more than you know. I thought I could handle it, but now I’m dealing with the consequences of bottling it up, being strong for the sake of others, and pretending all was well in the name of “normalcy” for far too long. It would have been helpful to have someone to talk to through all those years.
Did you attend any support groups during your challenge?
No, because I wanted so much to be normal and move forward with life as if nothing had happened. And also no one encouraged me to seek out help. I think they thought I didn’t need it because I was so young.
How are you connected with Young Adult Cancer Canada?
I recently discovered them while on the web.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Absolutely! I would love to help out in any way I can.
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