7 Years Post Transplant

Every milestone I reach I still can’t believe it, I can’t believe I’m here. Each year seems to get better than the last, despite navigating a global pandemic. I have slowly been weaning off Ruxolitinub for cGVHD and have noticed certain areas becoming more stiff and pigmented than others. I feel the musculoskeletal pain creeping back, which is very hard to explain. Overall I feel good, I do feel stronger. I am taking the least amount of medication I have in years. But I feel as though it might not be time to discontinue the medication.

I have continued to practice yoga regularly for it’s physical and mental benefits. I am maintaining my flexibility and strength. Visits to my Hematologist have decreased to every 3 months or so. The Nurse Practitioner I have been seeing has taken another position. There was always comfort in seeing the same person month to month. Someone who knows my history, my story, and remembers the little details. Financially I’m in a good place. I’m able to work full time. Being able to take care of myself this way is important and I really didn’t know if I would be able to get there. To not have to rely on anyone else. For so long I had no choice, which I believe explains my strong desire for independence.

I am fortunate to have received 2 doses of the Covid vaccine including the booster, with no crazy side effects might I add. I know this is not 100% protection from the virus but none of this is making sense anymore. More and more people who have been fully vaccinated are ending up in the hospital. Some days I worry more than others but overall I feel safe and am provided with the appropriate PPE.

I recently came across a book called Between Two Kingdoms written by Suleika Jaouad. I highly recommend this book to anyone going through a blood cancer diagnosis, or any cancer diagnosis for that matter. I related to her story as our experiences were quite similar. She was diagnosed with AML at 22 years old. She received a stem cell transplant and remained healthy until a few months ago. Now at 33 years old, about 10 years after her transplant, her Leukemia has come back. It’s extremely unsettling to think that relapse is still a possibility after so many years in remission. I know that every situation is different and no two people are the same but this news hasn’t been sitting well with me.

I’ve had this post saved in my drafts for quite some time. Earlier this week I unfortunately slipped on the ice and landed on my left wrist. I bruised my right knee pretty bad too. I tried to sleep it off hoping it would feel better the following day. I brought myself to the ER the following morning for an X-ray. Broken wrist. And just like that I’m off work for the time being. Not ideal financially, but I will survive. So much for being independent. I almost feel like this is a sign for me to get out of the COVID filled hospital where I work. Couldn’t be worse timing as far as the staffing shortages go. I see an Orthopedist in a few days so I’m hoping no surgery is needed. In the mean time I’ll be resting while trying to keep myself occupied. Last thing, be careful on the ice!!