When I was first admitted to the hospital, a nurse told me that I was lucky to have my kind of cancer. Half of me said “Screw you!” and the other half said, “You’re right.” Today, I am nearing the 2 ½ year anniversary of my chronic myelogenous leukemia (CML) diagnosis. My blood is in remission from the disease, and my bone marrow is almost there, too. Cancer feels very far away from my daily life—when I take my pills, I don’t think “Ho hum, taking my oral chemotherapy!”. The most obvious effects of the disease today are in my early bedtime and my refusal to accept the tequila shot.
I am very lucky in this respect. I did not have to undergo a bone marrow transplant or lose my hair. I often ask myself, “Out of the thousands of types of cancer, how was I so fortunate to get one of the mildest and most treatable kinds?” I am filled with gratitude each time I think about it. People tell me that I am brave or strong, but all I have done in my “fight” is show up to appointments and swallow a pill. Billions of dollars of Novartis’ R&D are more responsible for my health than anything I’ve done.
With this gratitude, however, comes a feeling of inner conflict. I don’t have a “traditional” kind of cancer. I never will have an inspirational moment in which I am told my fight is over. I live from pill to pill, knowing that if I stop taking this drug my cancer will almost certainly cause my death. I am able to comfortably ponder the fragility of my own existence, held in limbo by a red pill (very Matrix!).
A chronic illness is challenging due to its indefinite nature, and chronic cancer is even more befuddling. Who knew there were cancers treatable by pill before getting sick or knowing other sufferers? It makes one challenge the traditional definition of what constitutes an illness. There’s always some stigma attached to being sick, and many see a certain mental image when they picture “cancer.” I still fear telling employers or colleagues about my illness—will they see me as weak or broken? What if they don’t want that liability on their insurance bill?
Thus, for a long time, I kept my cancer a secret because I did not comfortably fit under its label. Until I was diagnosed, I had never heard of a “mild” strain of leukemia—many people haven’t. How do you succinctly explain to someone that you have leukemia, but it’s not that bad? The weight of so many peoples’ sadness, loss, and ugly fight with the disease lies behind the word “leukemia.” I never felt I could take ownership of the words “cancer” and “leukemia,” and I didn’t want to have to explain myself. I’m just not what comes to mind when people think of a cancer patient, and this confuses people.
These days, I feel much more comfortable embracing myself as I am—a healthy young woman with an invisible chronic illness. Life can sometimes seem like a certain set of steps one is supposed to follow. When we inevitably stray from the seemingly proscribed path, it can feel like you are missing out, behind everyone else, not living “right,” and so on. We all experience hardships that cause us to miss a step or even forge a new road, whether they be cancer, physical disability, or other illnesses and emotionally trying times. To pretend that anyone lives life with no stumbles along the way is absurd.
It is critical that we promote a culture of transparency and understanding surrounding our hardships. No one should have to feel like they will face adverse consequences in their personal relationships or work for sharing the experiences that make up the core of who they are as an individual. Fighting and winning against cancer is something everyone should recognize as beautiful, powerful, and impressive—not something to hide! Why should we only reveal our hardships sheepishly, and our successes (i.e., new promotion, new house) loudly? The difficult things we have (and will continue to) overcome are what make each and every one of us unique.
I hope that sharing my story will help other young and chronic cancer sufferers start to feel they can share their illness more openly. The lessons and personal strength gained from coping with and surviving cancer can be extremely powerful when harnessed. Let’s challenge the definition of sickness, promote understanding and empathy, and use our survivor strength to reach for the stars!
Visit The Leukemia & Lymphoma Society's discussion board for young adults, join an online chat for young adults, watch a video series on young adult survivorship, or check out other resources.
Read Isabel's first blog post, "Barely Legal, Barely Leukemic: My CML Story," here.
Isabel Munson is a writer and economics student at Northeastern University. You can reach her @isabelmunson or www.econogist.com