I am a 20-year-old student from Gatineau, who is currently studying molecular and translational medicine at the University of Ottawa. I was admitted to the University of Ottawa at age 16, and this is when my symptoms began. Let me explain…
I remember always having back pain down my left side ad it was difficult to walk around campus with my heavy books and laptop. To help, we changed the chair at my home workstation, my school bag with a sturdier knapsack… but nothing eased the pain. I was exhausted and lacked energy. I associated all of this with the stresses of starting university at the age of 16, and with trying to integrate with the older students. Everyone else was so motivated and I was not. I just didn’t understand it, especially since I was thrilled to start university.
Every morning I woke up at 5:30 am to go to school. At night I had difficulty falling asleep because as soon as I lay down, the back pain became more intense and even breathing hurt. I would hold my breath for as long as I could to have some relief and not feel the pain as frequently. In a nutshell, it hurt to walk and to breathe. What was going on? The clinic at the university suggested I take Advil and rest. So, I took a week off from school to rest exactly as I was told by the physician, but in the end I returned to the clinic.
I was seen by a different doctor who gave me a requisition for a chest x-ray. I also visited a chiropractor without success, and then a massage therapist. They discovered that my neck was swollen. Given that there was no pain accompanying the swelling I was not alarmed. The massage therapist believed in chakras and told me that something wasn’t right. Following the visit, I was diagnosed with strep throat then developed a cellulitis in my left leg. The antibiotics that were prescribed did not remedy the situation…
By October, I was admitted to CHEO and was scheduled for an intravenous antibiotic. I benefitted while on-site, as I could discuss the severity of my back pain and the difficulty I had breathing with the physician. While there, for a scheduled MRI to examine my leg, I noticed that my neck was swollen and clearly had a lump. I panicked. The staff told me to remain calm, but I was really scared.
I never would have thought that the lump could be caused by a cancer. The possibility of “cancer” was brought up by the specialist, and the world froze. I cried. My family was in denial. It must be something else.
A biopsy was performed and I was diagnosed with Hodgkin lymphoma on October 16, 2015. Shortly thereafter, I found out that it was Stage 4, and that my organs were affected. Following the devastating news of my diagnosis, it was time to be released from the hospital. Before leaving though, I remember going to the washroom, looking myself in the mirror and saying, “I am that girl with cancer… Cancer? The infamous illness that the world is raising funds for. Money is being donated to research this for me, and others like me. Am I going to lose my hair? Am I going to die?” Although, I do remember worrying about school before my health.
My family was in such shock, and my friends didn’t know how to act or what to say. My family was very supportive. They prepared healthy meals for me, took me to restaurants, and to my cousins to cheer me up. On social media, messages of encouragement were being posted, so I decided to go online to post about my diagnosis. I received messages from those who I had not heard from in a long time: “If you have a cancer, then this is the one you would want to have,” “I heard the survival rate was high, you will be ok”, “You will see you will be ok.” These are words of support that I did not want to hear. Don’t talk to me about the statistics of survival. I could have been the other percentile that did not get a cancer diagnosis. Not another victim who will die of cancer. How can you tell me I will be ok? Can you predict the future? So, my replies were: Thank you. It’s never easy being the patient. Truthfully, others don’t know what to say, except to give words of encouragement.
Those who knew me best, said that it’s ok to be angry, worried, that it is the worst news ever, but that they will be there every step of the way.
Before I started my treatments, I learned that there was a high risk of losing fertility. My radiation therapist was only able to salvage one of my ovaries and keep it out of harms way during treatment.
I had to stop school, and then work.
My father would accompany me to the hospital during my treatment and say to me, “Do you know how we eat an elephant? One bite at a time.” We will both be jumping over many hurdles, but we will be able to get through it together. I joined a Facebook group dedicated to lymphoma patients and survivors. Many of them shaved their heads before they started loosing it during their treatment. They told me that I was the one in control and to not let the cancer take control; it’s your choice. When I saw my hair on my pillow it was very painful to see, so I cut it off. I had a vey low self esteem during my treatments – putting on weight, losing my hair. I got a wig, which was very uncomfortable and during this time, all I wanted was to be comfortable.
My first chemo cocktail made me very tired, but thank goodness the anti-nausea medication worked for me. When I had the second chemo “cocktail” (which was milder) my hair started to grow back. During the15th day of this cycle, my knees were in pain. I needed to be on morphine and used ice packs to numb the pain in order to sleep. I went back to work for a change of pace. Then between my chemo and the beginning of my radiation treatment, I bought my dream car at the age of 17: a Mini Cooper. My radiation treatment went very well, but I didn’t like putting the mask on that was used to covered my face. I am a little claustrophobic, and it made me scared.
Finally, I finished my treatments. To celebrate, I had grapefruit. During treatment this is something that you are not allowed to eat. I also had a party with my friends and family. I always thought that I would never want to relive or speak about my experience. I wanted it to be in the past and to not be the girl with cancer. I was embarrassed.
So many things changed :
I lost relationships with friends, and grew stronger connections with others. Closer to the end of my treatment, my relationship ended because we were not seeing eye-to-eye, and I wasn’t easy to deal with. Pre-treatment, I was a happy and outgoing young lady. During treatment I became insecure and unhappy. I felt that I was taking up too much time of others. I was angry at my cancer diagnosis for changing my surroundings, my friends and my way of life.
However, after a few months, I realized that I learned a lot from this experience. I now listen to my body and know to appreciate the little things in life; even smal things like eating a grapefruit. I feel like everything in my life is a little extra special. I can put things more easily into perspective by comparing them to my cancer diagnosis. For example, the screen saver on my computer is an image of a lymphoma cell. Once I become stressed about school, I look at my computer screensaver and I know it could be worse. I learned how not to get upset when someone complains of having a cold, because good for them that that is the worst thing they must deal with. Before, I used to get so angry when someone said, “oh I have such a bad cold,” I was like “really you’re saying this to a girl who just finished a chemo treatment and doesn’t even know if she is going to live.”
Today, I am more mature, resilient, and can accept that this is now part of my past, present and future. I am capable of managing difficult situations, like knowing I am infertile. I can appreciate the field of science even more, since surely would not be here sharing my story today if it wasn’t for the latest innovations. When I walk around campus, I still remember seeing myself sitting on the stairs, not being able to get to class and calling my father to come get me. Now, I am happy that I’m no longer in pain. I want to go into the medical field to be able to save lives and compare all obstacles to the elephant that you eat one bite at a time.
To all the newly diagnosed patients, those who are currently in treatment, the survivors and the caregivers that are supporting a loved one, I have one word for you: COURAGE. If there is one thing you can take away from my journey, it is that it’s normal to be sad or angry during these difficult times. Fighting this battle is not easy. Tell yourself that this will probably be the most difficult time in your life. Because of this, other obstacles may not feel “so bad”. Cancer can destroy your “outer shell”, but it will build your “psychological shell”. It takes strong individuals to accept their fight against cancer.
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#LifeBeyondLymphoma #NCSD2019 #ForOneAnother