“It’s not cancer, but it’s kind of like cancer. It may as well be cancer.”
This is a phrase I’ve used more often than one would expect.
I had a rare blood disease, caused by a complication of juvenile rheumatoid arthritis, called Hemophagocytic lymphohistiocytosis (HLH). With this autoimmune disease, cells that are supposed to fight infections instead destroy healthy cells, rendering the body’s immune system useless. An infected bug bite once landed me in the hospital for 3 nights because the infection progressed so aggressively. Once or twice a year, I’d spend a week at a time in the hospital for fevers that may have started as a common cold but now threatened my life.
It’s not cancer, but I received chemotherapy and a bone marrow transplant.
In the summer of 2015, after years of on and off hospitalization, I met with a team of oncologists. The disease does not include any cancerous cells, but it’s similar to leukemia, as it’s a disease of the blood. According to this HLH support site, “When HLH patients are initially being worked up for a diagnosis, they often hear from their doctors to hope for leukemia because it has a higher survival rate of 80-90% while HLH has a survival rate of 30-50% at best.”I became so disgusted with my own body that I wouldn't shower. I didn't want to see myself. Click To Tweet
It’s fair to say I know what it’s like to be a cancer patient. I lived in the pediatric oncology ward for 5 weeks, followed by 100 days of reverse isolation at home. My hair began to fall out in clumps. I had weird bruises and discoloration all over my body. I was so weak that I couldn’t get out of bed and roll my IV pole to the bathroom, causing me to pee the bed on more than one occasion. I became so disgusted with my own body that I wouldn’t shower.
I didn’t want to see myself.
I’ve received support from cancer patients who have gone through surgeries and chemotherapy. Both online and in real life, I’ve made friends who I’ve commiserated with about the nightmare that is being sick. I have friends I keep in touch with to this day who I can discuss the lasting emotional impact of this type of health crisis with.Both online and in real life, I've made friends who I've commiserated with about the nightmare that is being sick. Click To Tweet
My friends with cancer have given me full permission to ‘play the cancer card’ whenever I need to. (Example: “Sorry, I’m late for work. I had cancer.”) To use the word cancer basically communicates the health crisis I have been through. Yet, it doesn’t quite feel right. My main reason is that there’s really no chance of me having a relapse. Technically, I’m in remission, but I’m essentially considered cured because of the chance of a relapse is so small it’s practically nonexistent.
When I say have cancer, I can only think of my friend who I lost to cancer in February.
My journey to health was fairly straightforward and my time in the hospital had an expiration date. Hers, however, did not. She never knew if she would ever be done with treatment. When she received test results, she was terrified. I had confidence that I would be okay in time, and she did not. I’ve always felt like my use of the word “cancer” to describe my illness co-opts the phrase. Sure, it’s an easy way to shine a light on what I’ve been through, but it’s not exactly accurate.
When I think about my friend who lost her life to cancer, it feels wrong for me to use the word. It’s similar to my experience, but not quite the same.I've always felt like my use of the word 'cancer' to describe my illness co-opts the phrase. Click To Tweet
I’ve been given the greenlight by other cancer patients and survivors to freely use the c-word. To my loved ones who supported me and sat at my bedside while I vomited during chemo, it didn’t matter what you called it. Their experience, their emotions, and their fears were essentially the same as they would’ve been if it were cancer.
So, maybe I’m just afraid of the word myself. Maybe I don’t want to use the word because it’s so heavy, scary, and intense.I've been given the greenlight by other cancer patients and survivors to freely use the c-word. Click To Tweet
Still, the word “cancer” isn’t totally accurate. Rather than describing it as cancer, I’d prefer to take the time to have an open conversation about my personal experience.
Who knows – maybe speaking out about my experience could help another HLH patient feel less alone.