It occurred to me this week that I recently passed the 2.5 year mark since my last rituximab infusion, a form of chemo that was used to treat my autoimmune disease in 2017.
I haven’t been as open about my health lately. Some people gave me “advice” that I should be more private about my health challenges – that being open could limit my future opportunities or negatively affect someone’s perception of me. I’ve thought a lot about that, and I think they’re right.
The other reason for my silence is compassion fatigue. Our feeds are filled with more health updates than we can handle. Sick people. Death counts. Infographics. Controversial government conspiracy theories. Sitting down and writing about my health is not easy when so many others are worse off or bombarded with bad news.
That being said, I don’t actually have any bad news to share.
It’s a weird time to be in remission. I know quarantine protocol well. It was my life during treatment. I would avoid crowds, wear a mask, carry hand sanitizer and refuse to shake hands. Thankfully, that’s not the way I’m forced to live anymore (except when we’re in the middle of a pandemic).
I’ve been in remission since mid-2018, meaning my platelet counts are steadily holding at or above a specific threshold. Since then, my counts have very, very slowly climbed and hovered right at the edge of being “normal.” I haven’t needed any additional treatment since then, but I have continued living with caution.
My body has never really bounced back from 15 months on high doses of steroids. Losing the weight is equally a physically arduous journey as much as it is a mental one. Prednisone certainly saves lives but it destroys so much more in the process. An optometrist noticed damage to my eyes from the steroids and I finally had to get glasses last year. And my own skin has felt foreign to me since the first day of treatment. Life certainly did not go back to normal because of remission, but stability and peace of mind–not worrying my headache is a brain bleed, for example–is a wonderful thing.
The pandemic has reminded me of those days in treatment. It also presents a danger. Most experts agree that contracting the virus doesn’t worsen ITP, but it can certainly create complications. ITP patients cannot take common medications for fever and body aches because they lower platelet counts (e.g. NSAIDS like Advil). And while the jury is still out on what exactly causes ITP, most doctors believe it’s triggered by a virus. Could getting another virus cause my immune system to relapse and start attacking my platelets again?
There are no answers to my questions, only educated guesses. The best course of action is always caution. So if you don’t see me at church for a few months, you know where I’ll be.
(Safe at home.)
Convergences of Reverie 