What school do you attend: University of Calgary
Career Goals: Work in dance therapy with cancer survivors, and become a certified yoga instructor (would love to work with pre/post natal women and with survivors in this field as well!)
How did you find out you were sick?
I was never a very healthy child or teenager. I always got colds and my lifestyle choices were very poor. When I was 18, I began to lose weight rather easily and I noticed some lumps on the side of my neck. I decided to ignore them and (sad as it sounds) hoped they would just go away. Six months later, the lumps had multiplied and were becoming painful. I finally showed my mom, who immediately took me to a doctor. It took them another six months or so to figure out what was happening. Throughout this time, I began having night sweats and dizzy spells. We went from doctor to doctor trying to figure out what was causing all of this. Finally we ended up at a walk-in clinic, and the doctor we saw ordered a biopsy. The results came back as Lymphoma. After another open biopsy, I was diagnosed with Stage II Hodgkin's Lymphoma. I went through treatment, was assured the cancer would be resolved, and ended up relapsing just shy of four months after my last round of chemo.
At this point, I opted for naturopathic therapy instead of continuing on with further treatment. This worked well for me for a time. I had more energy and when I returned to my doctor, he couldn't find any signs of the cancer. I continued on like this for five years. By fall of 2007, I began to notice I was getting more and more exhausted. I attributed it to university (I was a Dance major). A few months later, I had dropped 10 pounds (I was already pretty small at this point so the drop was quite noticeable) and I started to get an intense pain in my back. I thought I had injured myself in dance class, and continued on as usual. A week after finishing my fall semester, I got extremely sick. The doctors thought I had pneumonia. Very soon after that diagnosis, I lost my ability to walk. I went through a barrage of tests. On New Year's Eve 2007, I went to the emergency room, since I could no longer sleep due to the pain, and the feeling in my legs was quickly going away. I was diagnosed with Stage 4B Hodgkin's Lymphoma. The cancer had spread to my chest (fluid was built up around my heart) and spinal cord. The surgeon told me that if I had waited a week longer to come in, I would have been paralyzed.
What year was it/age at the time/education level?
My first diagnosis was in 2002, I was 19 and in my second year of university. My second diagnosis was in 2003 and I was 20. My third was in 2007, I was 25 and in my third year of the Dance program.
What were your first thoughts when diagnosed?
All three times I was in total shock. The first time I couldn't really comprehend what was happening. The first thing I asked the doctor was to explain what Lymphoma was. The second thing I wanted to know was what was going to happen to me next. The third time I was in complete denial. I felt like I was in a nightmare. I had often wondered what would happen if I relapsed again, but I never actually dreamed it would be happening. I didn't believe the doctors and I made the surgeon show me images of my MRI so I could see exactly what was happening. I didn't have much time to get used to the idea though, because I had to get ready to go into emergency surgery.
How did your family react? My mom was incredibly supportive; she was (and still is) my rock!
How did your friends react? Were you treated any different?
I was absolutely treated differently. A lot of people don't realize that you're still the same person. I lost all of my friends after my first relapse. I met some new people afterwards, and one woman in particular became my best friend. During my second relapse where I lost my ability to walk, she was incredible. She stuck by my side when everyone else left; she came to my chemo appointments and brought me cupcakes when I was up to eating. I truly believe that in times of crisis you will find out who your true friends are and I was so lucky to have one who stood by me.
What did your treatment consist of?
During my first diagnosis I went through six months of chemo as an outpatient. After my 2007 relapse, I had a laminectomy (spinal surgery), outpatient chemo, and a stem cell transplant, which was done as both an inpatient and outpatient. I also had extensive physio to recover my ability to walk.
The first time I had chemo, it was rough. I could barely make it home before I was throwing up. The anti-nausea medication I had didn't work well for me and I was so nervous before my treatments that I was prescribed Ativan. My veins were collapsing and I was exhausted. I dreaded chemo. The second time I went through treatment, I knew I had to get in a better state of mind. I realized that in order to get better, I had to become more positive and believe I was going to get well again. I journaled and started visualizing the cancer getting smaller. I thought of chemo as a medicine that was going to help my body instead of hurting it. My mom and I bought beautiful things for my room where I spent most of my time healing. My first chemo was a breeze. I didn't get any side effects. However, I did get a nasty case of shingles about a week afterward which prevented me from receiving my next chemo. I didn't let that stop me. I had days where I let myself fall and cry, but I always did my best to get back into a positive frame of mind afterwards.
In which hospital(s) were you treated? First time at Peter Lougheed Hospital, second time at Tom Baker Cancer Centre.
What is your current medical status? Totally and happily cancer-free and in remission!
How is life different for you now?
My life has completely changed. I do my best to put myself first and take care of myself. I am huge on living a healthy lifestyle. I believe that we create our experiences in life, so I try my best to keep a positive frame of mind. I also realize that as human beings, we need to fall and regroup sometimes, and I allow myself the space to do that as well. I've learned that spirituality has a big place in my life.
The treatments have been really hard on my body. After my transplant, I developed an under-active thyroid and went into a depression. I refused medication for both conditions, since I had done some research on the side effects, which were astounding. Instead, I changed my diet, made exercise a big focus and worked on improving my outlook on life. It took some time, but my thyroid went back to normal, and my depression lifted. Yoga was instrumental for me in this change. My lung capacity is taking some time to return to normal, and I do get tired more easily, but this is all improving with time!
What was the toughest part of your challenge?
Losing my mobility was by far the toughest part for me. As a dancer, it took away a part of myself. Learning how to walk again was incredibly challenging, but I'm lucky I had my dance training to help me recover that ability. It was really hard to be treated differently because I was using a walker or a cane. People acted as though I had a mental disability.
What was the best part of having your challenge? There are so many blessings that came out of my experience. One of the highlights is realizing that I now have the tools and the desire to help other people going through the same journey!
What really motivated you to keep going while you were sick? My mom was my biggest supporter, and she kept me going on the days I felt like giving up. My best friend was such a key part of my motivation as well; I don't know how well I would have done without either of them.
What lessons or messages have you taken away from your experience?
Positive thinking has a huge impact on your recovery. It's okay to acknowledge the bad feelings too; in fact, it's necessary in order to move forward with your fight and with your life afterwards. There will be a time period where you have to grieve the loss of your old life, because your life won't be the same after this experience. Moving forward after that is key. Take what you can from this experience and use it as an opportunity to learn, grow and become a better person.
What are some preventative measures people can take to lower their risk of having an experience like yours?
First off, maintaining a healthy lifestyle is so important! Eating well, exercising, all of that is vital. Also, keeping yourself in good emotional and mental health is crucial. If there is anything that you are unsure about manifesting itself in your body, get it checked out immediately! Always have control of your body and your life!
Did you attend any support groups?
I tried to attend a support group while I was recovering from my transplant. It was a terrible experience. All the women there were over 40 and all kept dwelling on what had happened to them. I really wished there was a group around for people my age that focused on how to deal with what had happened and move forward successfully.
How did you connect with Young Adult Cancer Canada? One of my nurses had given me a flyer for Retreat Yourself. I wasn't at a point in my recovery where I could attend, so I held onto it. I'm so glad I did! I'm really excited to be connected to a community of people who have been through similar experiences.
If you are interested in connecting with Naaz Ali please email firstname.lastname@example.org.