When I was finally done with my Rituxan treatments and my doctor declared it a success, I was so relieved. Finally I felt like I had some control over ITP. Then I inquired about how long my remission would last. I was warned that after about 9 months, my body will start to produce new working cells that Rituxan had disabled. I referenced my calendar and saw that it would be close to my 29th birthday. Now every day I wake up, I think about this upcoming date.
The thing about remission with ITP is that unlike cancer, anyone can fall back. I know people who were in remission for 20 years and woke up one day covered in petechiae. Every day since being diagnosed I obsessively check for bruises. I count the minutes it takes for cuts to clot, I stress over how heavy my periods are. It boils down to a sort of PTSD over ITP, and it is hell. Not knowing when my platelets will drop again and what the first sign will be is frustrating. I don’t want to suddenly drop and subject myself to prednisone. I’m more worried about those stupid pills than I am doing Rituxan again!
Also hanging over my head is law school coming up. I am worried that my first few weeks in I could have some severe complications. Then there is the concern that I might have trouble getting my insurance to cover another round of Rituxan. This keeps me up at night and elicits a sort of panic I cannot adequately describe. I can’t find a way to calm my fears and anxiety, simply because there is nothing that anyone can do to keep ITP at bay. Until we have a cure, the fear of remission ending will still haunt me.