No matter how hard we try, I think we’ll always be defined somewhat by our transplant. It seems like when people beyond our family and close friends find out, we’re treated differently. So I can certainly understand your reluctance to share your medical history with your new employer. But I can imagine it really does present some obstacles when you’re exhausted, having a GvHD flare up, taking meds, finding time for medical visits and such.
My AML-transplant life all started the day after my 65th b-day. So I’ve not had to worry about leading a normal life in a work environment…and then toss in Covid for good measure. I’m pretty much a homebody though I certainly get out in the world. Not living in fear, just educated caution.
For me, since I was retired 15 years before AML hit, I’ve pretty much slowly morphed back into my former existence. My GvHD is calm now, my energy has returned to full. I just took my last (hopefully) Tacrolimus capsule Monday after several months of taper. My transplant doctor feels very optimistic this time that I my new immune system and I have reached a peaceful settlement. LOL. But now it’s new territory because not having the suppressant in my system, GvHD is always lurking in the background.
Anyway, there’s been a recent paradigm shift in my mental thoughts. I no longer feel like a patient. Maybe it happens at the 2 year point? Those first two years were really rough.
It hit me when I went for local blood tests a couple weeks ago, pulling into the parking lot of the cancer center, driving there myself like a normal person. I saw patients with their caregivers walking along with faltering, but determined steps who looked like me 2-ish years ago. Bald, emaciated to almost skeletal, sunken eyes trying to hold light and promise. I was almost late for my appt as it took time for me to get my tears under control. Not sure what happened but the flood gates opened for the first time since this all began. I think it was gratitude and relief and acceptance that I’m truly over the worst of this. It was all very cathartic and I’ve just felt so differently ever since!
So, while I don’t have the same situation of trying to cope in a working environment I’m really empathetic for what you’re having to handle daily. And as a fellow SCT cohort, I’m can’t help but smile thinking about your bravery and accomplishments! You’ve achieved some enormous goals over the past 5 years.
There are always unexpected challenges with a SCT. I still think we’re pretty darned brave and a bit like a Frankenstein baby. We need a sense of humor and a sense of adventure to get through this new life with someone else’s DNA coursing through our bodies.
Hopefully more SCT and other transplant members will write in and share their stories of how they’re back in the workforce with their super powers!