The picture on the left is when I was still bald during my radiation treatments of May 2010. The picture on the left is me enjoying the outdoors cancer-free in September 2010.
Hometown: Winnipeg, Manitoba, Canada
What school did you attend? I graduated from Sisler High School in 2004
What is your occupation? General Insurance Agent
What is your career goal? To own my own business one day.
Your Cancer experience:
How did you find out you were sick? What led to the diagnosis?
It started out as a harmless cough that I could drink tea or suck on cough drops and it would take care of it for a few days. In July, it was becoming apparent to me my stamina was beginning to decrease. I did group fitness and I was struggling to keep up with the class. By August, the cough grew to an ugly hacking fit, but nothing would come up and nothing could sooth it. I also noticed bruising across my chest from armpit to armpit that looked like blue spider-like blood vessels. At this point the lymph nodes in my neck were so swollen you couldn’t see my collar bone anymore and they pushed out like two painless veins. I couldn’t walk up two flights of stairs without being short of breath.
By September, I was getting frustrated with the coughing so I went to my GP and was told it was asthma, and to take a Spirometry test (where you have to blow as hard as you can through a tube so they can measure how much oxygen passes through your lungs). They gave me an inhaler and prescription, and said, “don’t worry about it, the results will be back in three weeks.”
The moment I took the test, I knew it wasn’t asthma. I had a lung capacity of 60 per cent, at 23! The inhaler didn’t even make a noticeable difference. At the end of September I started getting these daily headaches. I wake up, it’s there, go to bed it’s there. No pain killers could make it go away. At this point I could no longer lay flat on my back, and I had to sleep on my side, otherwise I couldn’t breathe and would start a fit of coughing.
On Sunday, October 11, I finally couldn’t take it and I checked myself into the ER. After 20 minutes of waiting calmly, the triage nurse measured my vitals and noticed my heart rate was 110 BPM and my oxygen saturation was in the low 90s. After another spirometry test and arguing it’s not asthma, they sent me for a chest x-ray to rule out pneumonia. “OH!” they said, “That HUGE mass in your chest doesn’t belong there!” The ER doctor thinks it could be thymoma or lymphoma at this point he needs to send me for more tests. After the chest and head/neck CT scan, I saw a thoracic surgeon that night and he had me in surgery within 36 hours for a biopsy (It would have been the next morning but it was Thanksgiving holiday and he needed his day off). Just by looking at me, my symptoms and the scans he was almost positive it was lymphoma. When he was describing that from the biopsy he needed to determine whether it was Hodgkin’s or non-Hodgkin’s, I knew right then it was cancer but he would not use the C-word. I vaguely knew what lymphoma was when he said it but sure enough I found out very quickly the next day from the Internet.
What year was it? What was your age at the time?
It was October of 2009 and 23-years-old (Just celebrated it the month before)
At what level of education were you at diagnosis?
High school graduate, I have multiple insurance licenses
What was your diagnosis?
Stage II Non-Hodgkin’s Mediastinal Diffuse Large B Cell Lymphoma
What were your first thoughts when diagnosed?
I was still recovering from the biopsy when they told me. At first I was sad but then I wanted to know what I can do to beat this. It wasn’t until a few days later when it started sinking in that I HAVE CANCER. I was shocked, sad, confused and angry. How could this happen to me? Why me? What did I do to deserve this?
How did your family react?
My husband was very upset as he had just lost someone very close to him from cancer in August. This was the first time my dad cried openly. My mom and sister did what they do best: they hugged and loved me and found as much information on this thing as possible because that’s what I would’ve done. They were with me in the hospital everyday and because of them, I made it through.
How did your friends react? Were you treated any different?
My best friend who also worked at the hospital visited me every day for lunch and provided some much-needed comic relief. Most of the people who visited me were curious and had questions about what had happened.
Others said they would visit but never did. Those ones made me feel like some juicy piece of gossip. They would ask and be concerned but once they got the story I never heard from them again. Unfortunately, I still haven’t heard from most of the latter kind and it’s been a year and a half since I was diagnosed.
What did your treatment consist of?
The day of my biopsy and the day after, I had a high dose of radiation both days, which helped it shrink the tumour considerably so I can lie on my back, again. While in the hospital I had a battery of tests done, including: MUGA, CT scans, x-ray, bone marrow biopsy, spinal tap, daily blood tests and I was on blood thinners due to my inability to walk anywhere. I was admitted to the hospital for 16 days (my first ever overnight hospital stay) after the biopsy that was supposed to be day surgery. The mass measured 15 centimetres by 18 centimetres and most of my left lung had collapsed and was threatening my right lung.
After they made their first incision, I started going into cardiac arrest and as it turns out the tumour was squeezing shut the main artery to my brain (causing the headaches and blue spider like veins on my chest) plus, my heart was slowly being crushed by the pericardium (protective sac around your heart) because it was full of fluid.
I had eight cycles of R-CHOP every three weeks. Just before my third chemo treatment, I had a PICC inserted in my right (dominate arm). They tried inserting it while I was hospitalized but the swelling was so bad that even after 90 minutes of trying to thread the PICC in, the IV nurses had to give up. As of my sixth chemo treatment, I was switched to rapid, since my first treatment of Rituximab caused an anaphylactic reaction. The sad thing was the rapid only shortened my chemo time to six hours instead of eight hours.
In May 2010, I finished treatment with another 15 rounds of low dose radiation.
Describe the non-medical side
Only the first chemo caused me the worst discomfort and pain. I had a mind-numbing headache on the left side of my brain for days. I took Codeine but all it did was help me sleep away the time. By the time I left the hospital, I could barely walk a block without being short of breath, and walking up stairs was exhausting. They say your body changes on you, without telling you. I was neither hungry or full for almost a month. The only time I knew when to eat was to look at the clock. I had to portion out my meals and not grab second or thirds because I couldn’t tell when I was full.
The doctors told me it may be until the second or third treatment before my hair gets noticeably thin. The nurses said it could be right after the first one. Did I ever know! There was hair everywhere; on my pillow, in my bed, on my clothes, on any sort of hat I wore, it was especially thick on any comb I used, and the shower was torture. When I would massage my scalp with the shampoo I could feel my hair in a whole new way and when I would pull my hands away to rinse them, they would be covered in my hair. There is nothing worse than feeling your hair run down your back during a shower and knowing there is only one solution, shave it off. It was harder to cut 14 inches of hair to donate to CancerCare in 2008, than it was to shave it off because I had cancer. By then, I had come to the resolution that hair was just hair. It grows back and it’s replaceable.
The other hurdle to overcome is the day to day muscle fatigue. Doing laundry requires an incredible amount to strength and determination now. I’ll be sore and in pain for days after doing four loads of laundry. I can’t work at a full time job now; 20 hours a week tires me out.
One of the drugs I was put on was Prednisone. When I took it, I was superwoman. It felt like I had my strength and energy back! After the five days of 100mg it would be a slow, painful crash and burn. I would be so excited to be “normal” I would over exert myself and be in worse shape than before. The other side effect was the weight gain. Most people end up losing weight while on treatment, I gained about 30 pounds and I haven’t been able to lose it since my body is still recovering.
In which hospital were you treated?
MacCharles CancerCare of Manitoba, Health Sciences Center
What is your current medical status?
Successfully finished treatment and moving on with life
How is life different for you now post diagnosis?
I want to accomplish more in my life. An entry level position isn’t good enough. I want a career—heck, I want to run my own business. I was angry for a very long time and some days I still am. I would joke about the things that bother me and try to downplay how it was making me feel, it helped but what I really needed was to let myself grieve; to grieve for what I had and who I am. I loved myself and my life before cancer, now that I’m on the other side of treatment I need to embrace the new me. I try to remind myself, the grass is green on my side, even if I have to use a little paint.
Before I was diagnosed, I couldn’t name one person who was close to me that had cancer, it was barely on my radar. I was so confident it could never happen to me. It crushed me when I was diagnosed but I was able to make it through to the other side with only a couple scars (quite literally).
What is/was the toughest part of your challenge?
Being “sick.” Knowing I am 23 and I can’t do what a 23-year-old should be able to do. I can’t go traveling, let alone camping for fear of an infection and not being close enough to a hospital that will be able to adequately treat me. I have to wait until I’m almost 30 before I can even start thinking about kids. I can’t work full-time, I am just able to work 20 hours a week and even that is tiring. I’m exhausted after simple things like doing dishes, laundry, vacuuming, and mopping. I took my health, body, and strength for granted when I had it.
Then there is the fear of never being cancer-free. In some people cancer never leaves and they will spend the rest of their life fighting, in and out of chemo. However, I still believe I will be the kind that has one battle and never again will cancer come back.
What was the best part about your challenge?
I became so much closer to my husband and my family. I’ve seen the goodness in people that I didn’t see there before—maybe it was there all along but because I didn’t look for it, I didn’t see it. It’s shown me that I can do great things; I am determined, stubborn, and I can persevere. It reinforced who I am: a fighter.
What really motivated you to keep going while you were sick?
My husband. I want to have his children, whether naturally or adopted. I want to buy our first house together, get our first pet, and have a life. I want to see our 80th wedding anniversary in 2087 (we’ll be in our early 100s). I’ve always believed I am destined for great things; I want to be here to make these great things happen!
What lessons or messages have you taken away from your experience?
Life changes so quickly. Do what you planned to do yesterday today, because tomorrow may never come. It’s not always easy to live by, but you get a lot more things done!
What are some preventative measures that people can take to lower their risk of having an experience like yours?
Be your own doctor. You know your body best, do the research. If something doesn’t feel right, it probably isn’t. Just because one, two, or maybe even three doctors don’t agree with you, find a fourth who will put the time and effort into figuring out what is causing the issue. Doctors are not created equal and they do not read minds, we must help them keep us healthy.
Did you attend any support groups during your challenge?
Yes, at first I didn’t because I wasn’t ready. After three months, I started getting very lonely and isolated, as if I was the only one. I went to a number of groups. One was an art therapy group, I really enjoyed being able to express myself in the art but everyone was two or three times my age. There was a group that was based on the similar type of cancer but again everyone was older than me. I went to one for young people, and that was wonderful because I was able to see how they are dealing with the same issues I’m facing (career changes, family).
How are you connected with Young Adult Cancer Canada?
Someone told me about the YACC retreat and so I found YACC online. I think it’s a wonderful site with loads of information and support.