It’s now late October 2024. I apparently have a diagnosis. It’s a lot to wrap my head around. I feel overwhelmed most days.

My first round of treatment is scheduled Thanksgiving week. I wish I could start sooner, but there are other patients with a variety of serious illnesses waiting in line ahead of me. We’re all equally important and desperate. I try to stay calm, but I worry about my disease advancing while I wait for my infusions. It’s an uncomfortable limbo.

I’m back on high, daily doses of prednisone. I don’t sleep anymore and feel constantly manic. I worry my bones are dissolving. I worry about becoming diabetic. But, I don’t really have a choice, so I do what I must.

I worry about the infusion treatment’s impact on my immune system. I’ve read that I will be immunosuppressed for up to 18 months after I finish treatment. I also know that treatment may be two rounds or it may be many repeated rounds. I may reach remission. I may not. Remission may be temporary. Whatever happens, my life is permanently altered.

I’ve been invited to participate in an official support group, I’m doing a mind-body wellness and yoga series for women with similar diagnoses. I’m also attending the international patient education conference this weekend. All of this support was made possible through the UNC team. It’s wonderful to feel less alone, but it’s also staggering to have my life change so dramatically.

It’s like not having solid ground under my feet.

I feel like I’m standing on the edge of a crumbling precipice. I think I’ll feel more settled once I start treatments. I think I’ll feel hope again when and if the treatments start working.