Two years ago today I was told my transplant was a success, and the resulting GVHD had put me into remission, I was officially cancer free. I still am.
A year ago today I was told I had CMV for the 9th time and it had become double drug resistant; If we couldn’t find another drug option I would likely die from CMV. A drug called maribovir was in the middle of trials in the states. I couldn’t get in the trial, but they compassionately granted me use of the drug. They flew me up two bottles that said ‘Experimental use only, not FDA approved’. It worked. It got rid of my CMV once and for all.
This week, that drug finished trials with flying colours and I was damn lucky to get to go along for the ride. Eight months ago I had guillain barre syndrome. I was unable to stand, let alone walk or write. A mechanical lift moved me to a wheelchair and two people helped me get to my feet. Every inch, every step was like a baby learning everything all over again.
Six weeks ago, I had my first hip replaced. Last week my husband and I completed our first fitness challenge and walked 42km together in less than a week. I walked 6km in one day!
A year ago I weighed almost 250 pounds. Today I weigh 155. All things are time… and time is all things. The wait sometimes feel infinite- especially for my transplant friends when we are awaiting our gvhd to burn out. I am so infinitely proud of how far I have come. One slow, painfull, staggered step at a time I made it to today and today is so beautiful and I am so grateful. I am so very lucky.