“I’m going in for chemotherapy.” That was my response when people inquired about my treatment plan.
“But you don’t have cancer.” That was the reply I got from most of them. “So it can’t be that bad. I mean, it can’t be real chemo, can it?”
How do you determine what “real” chemotherapy is? Did you know that the treatment is not just for cancer, but it’s also used as a therapy in autoimmune conditions as it suppresses the immune system? That approach aims to restore normal functioning. Since my diagnosis, I’ve been on at least three different types of chemotherapy to try to get my myasthenia gravis under control. I have battled with side effects, relied on my inner strength, and pushed through.
This last round of chemo was my toughest yet. The regimen was part of my stem cell transplant treatment and my doctors had warned me that it would be hard. I was in isolation for five days while I received a cocktail of chemotherapies over 24 hours every day via my port. I was connected to my little friend, the drip stand, for the entire stay.
My immediate side effects were nausea, vomiting, and diarrhea — often at the same time. I was very grateful to be alone in my little room. I lost my appetite, though I had to try to force food down to take my other medications and keep my strength up. The poor catering ladies at the hospital tried their best to bring me a variety of foods to stimulate my appetite, but knowing that it would come straight back up prevented me from relaxing about eating.
I then gained over 10 kilograms in water retention. I looked like a puffer fish and could barely open my eyes. I had big chubby cheeks, and pajamas that had fitted me perfectly upon admission were so tight that the seams threatened to cut off my circulation. Fortunately, the retention lasted for just a few days, but it was excruciating as my skin stretched to accommodate the extra weight and I developed a nasty rash because of a reaction to the chemicals in my body. My skin began to peel off and little red dots spread from my feet to the crown of my head.
Perhaps the most challenging side effect I’ve had to deal with is hair loss. I had experienced hair thinning during my previous chemo treatments, but not hair loss like this where clumps of hairs fell out when I ran my fingers through the strands. Within two days I had visible bald patches, so I decided to shave my head. You may think “it’s just hair,” but when you’re feeling severely ill, hair loss is like the straw that breaks the camel’s back.
So, the next time someone says to me, “Well, at least it’s not for cancer,” I may ask them to explain to me the difference between chemo for an autoimmune condition like myasthenia gravis and chemo for cancer. My doctors can’t distinguish between the two and neither can I. For now, I will keep fighting and never give up because life is amazing!
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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