Karisma’s Story

October 13 2004, exactly two months after my 18th birthday, my life, which I thought was just beginning, was in danger of ending.Ready to take on the world.

I had just graduated from high school and I was ready to take on the world. I had a wonderful summer and when university started, I was pumped. One month into classes, I had my yearly medical check-up, which involved a blood test I requested. I don’t even want to think of what might have happened had I not asked for one. I didn’t think much of the test because I’d had plenty of them before and nothing ever happened. How was I to know that this time it would be different? Three days later, a phone call changed my entire life. The test results were in and they told me that along with my parents, I would have to go to the hospital immediately.

Cancer strikes: why me?

My thoughts were racing as we raced to the hospital. I can’t be sick. No one in my family has ever had cancer, and besides, I can’t stay in the hospital: I have school. I’m sure you all remember the homework pileup and cram time of university days. But the most obvious question running through my mind was, “Why me?” I had so many things I wanted to do and so many places I wanted to see. Eighteen years on God’s green earth wasn’t enough for me.

When we arrived at the hospital, the doctors told me I had acute lymphoblastic leukemia, cancer of the blood and bone marrow. Seventy five per cent of my cells were affected. They placed me in the high risk category because of my age. I didn’t know at the time but my parents later told me that if I didn’t’ react positively to the chemo, there was absolutely nothing more that they could do. To this day, knowing that I almost died still scares me.

Hospitals, needles and IVs

During my 10-day stay at the hospital, I had two surgeries and so many needles and IV insertions that both my arms bruised like crazy. But the nurses and doctors were so nice to me. They tried to make the pain a little more bearable. They treated me the same way they would treat a five-year-old. The only time I forgot about being sick was when my friends visited. After they left, I envied them because they were healthy and were able to go home and here I was stuck in room 14 with cancer.

Radiation

After 10 days in the hospital, I was finally able to go home. But it was far from over. The next couple of weeks were even more hectic. However, the nurses’ in the clinic helped make my visits more bearable and easier by helping me feel comfortable and loved. Even though the induction stage of my treatment had killed most of the cancer cells, 0.5 per cent of the cancer cells were left in my bone marrow. They told me I needed radiation. I have never been so nauseated, or experienced such painful headaches in my entire life.

Losing my hair

It was during this time that my hair started falling out. I’d wake up in the morning and my pillow would be covered in my long black hair. That moment was one of the most depressing moments ever. I knew it would grow back but each time I thought my hair was there for good, it started falling out again. In total, I lost my hair three times. The third time, I was completely bald and my head was really shiny. I know it may not seem like a big deal, but I was always afraid it wouldn’t grow back and I’d be bald for the rest of my life. There were days I couldn’t even bear to look in a mirror. I’m not going to lie to you. Most days I was depressed and angry. I hated being stuck at home while my friends were out having the time of their lives.

Isolation

For six months, I was isolated from the world. The only time I went out was to go for chemo. Fun! Fun! Everything I took for granted, like going to movies, eating out, going to school, shopping (oh my god, I missed this the most!), I could no longer do. My only communication with the outside world was through MSN and the phone. Let’s just say I learned how to type real good and fast and the phone bill was quite expensive. Because I didn’t have a lot to do, I watched movies, a lot of movies. I think I pretty much rented every movie from Blockbuster.

Connecting with family

From the start, my family was at my side. It may seem strange, but to me, cancer was actually a blessing in disguise. It brought my family closer and improved our relationships with one another. Even when I was cranky, unbearable, moody and throwing up all over the place, my family was there to cheer me on and help pick up the pieces. They never stopped encouraging me to keep on fighting and to keep on living.

Connecting with God

God also became a bigger part of my life. Praying with my family brought me comfort when I was at the hospital. It also helped me to feel safe and calm.

Thank goodness for doctors and nurses

And the nurses and doctors in the Q-cluster at the Alberta Children’s Hospital literally saved my life. I’m here today because of them. They are wonderful, compassionate and full of love. They never treated me any different even though I was 18. In fact, they babied me and took care of me like I was their own child.

Rules of the cancer game

After the first six months, my health started improving. Sometimes I was able to go out. However, there were strict rules around this because chemo and radiation compromises your immune system. The rules were: 1) I had to wear a mask; 2) I had to bring Purell with me, everywhere; and 3) I had to carry wet naps everywhere. The last two were easy. But the mask? Not only did I look like a freak but it also fogged up my glasses. Once, when I was at Ikea and I was wearing THE MASK and little kids ran away the second they saw me. When I went to movies, my mom made me wear a mask at the theater. So whenever I saw a cute guy, all he could see was my fogged up glasses. Even now, when I go out to eat, I still have to tell the waiter about my condition and I bring my own cutlery. I feel like Jack Nicholas in As Good as it Gets. So you can see just how drastic the changes in my life have been. The fact is, I couldn’t risk getting sick, and if I wanted to go out, I had to follow the rules. But I am very happy to say now that my immune system is stronger and I no longer have to wear the mask.

Even though I was able to go out, I was still really depressed and self-conscious about the way I looked. My parents constantly told me I was beautiful but I still felt ugly. I avoided mirrors and anything that would reflect my image for a long time. I wore a hat everywhere I went.

KCCFA: finding my self-esteem again

The one thing that helped me to regain my self-esteem was the Kids Cancer Care Foundation of Alberta (KCCFA). A social worker at the children’s hospital encouraged me to go to a weekend retreat for teens and young adults like me who had or were going through cancer. At the weekend retreat, I slowly regained my self-esteem. I no longer thought I was ugly. Then, later on, I experienced something that changed my life forever: KCCFA camps. From the moment I stepped off that bus I went through a revelation. I saw so many kids there and I realized that there were survivors and that I would probably beat this. Camp was exhilarating and it was a week I will never forget. Of course I don’t think the counsellors forgot me either. You know that commercial with the kid and the good toilet paper? Well, I was the camper who brought food instead. I was the only one there with a 12-pack of water, two packs of juice boxes, countless fruit bars, Oreos, and crackers. I made a lot of friends. Every day was a new adventure. I went river rafting for the first time and it was so amazing. We also had a huge mud fight and all I can say is I really appreciated the fact that there were showers there. I rode the giant swing and I swear it’s even better than the Drop of Doom at the Stampede.

I also earned myself a nickname: CRASH. Not a day went by without me falling or tripping or cutting my fingers. The team medic was pretty much my best friend and he was constantly by my side. When he couldn’t be there, he’d give me a bag of band-aids just in case I hurt myself. At the end of the week, I had six band-aids on my fingers, two on my knee and one on my toe.

The freedom of camp

The best part of camp, though, is that for six days you feel absolutely free. Free from the treatments, free from overprotecting parents (not that it’s a bad thing, but sometimes it can get a little overwhelming) and free to do a lot of stuff and get away with it. Well, almost. But mostly I felt FREE knowing that I would probably beat this cancer.
At camp everyone treats each other with respect and dignity. The counsellors take the time to get to know each and every camper, no matter the age. We share jokes, along with secret laughs and smiles. We form a special bond that can never be broken. You have to understand, kids who are affected by cancer are forced to grow up faster and so many of them miss out on their childhood. They know medical terms that would make your tongue twist. Camp is a place where kids can be kids again, where they can forget about all the crap they’re going through.

Thank you

I would like to thank all the donors, volunteers and community partners of KCCFA. Because of your generosity and time, some 400 kids will be given a chance to feel normal this summer. I can’t tell you how much this means to all of us.

A new perspective

They say that in a brief moment everything can change. But that change doesn’t have to be bad. Cancer does suck. But please don’t feel sorry for me. I’m glad I got it. I may have lost a couple of years but I have gained so much more. I gained a better relationship with my family. I got to know them again and they are the reason I want to live. I gained a best friend, Anna Dabrowski, who also went to my high school and was diagnosed with cancer about the same time I was. We are pillars of strength for each other. I also gained a new perspective on life: I realize life is precious and that every moment is a blessing. I’m thankful for all that I have in my life and I try not to take things for granted anymore.

I am proud to be a survivor and I am proud to stand here in front of you representing this wonderful organization. I want all of you to know that what you do for KCCFA will never be forgotten by the Foundation or the kids they help. The money you raise will help fund research or clinical support at the hospital or send many kids to camp. Thank you and god bless.

Karisma was the 2006 KCCFA spokeskid. The above story is taken from the speech she gave at fundraising events around the province that year.