Year 11 Post Transplant

It’s been 11 years since my stem cell transplant to treat AML. About a year after no longer taking Jakavi my cGvHD is at its worst just as I feared. The Rezurock alone is not enough to manage this flare up. Each flare seems to be worse than the last. I tried to tough it out as long as I could but when it started to affect my joints and range of motion, I knew I had to see my Hematologist. I let it get to a point where I was unable to get myself out of the bath and simple tasks like getting dressed were causing me excruciating pain. My ankles and knees swelled up making it difficult to get through a day at work. Being in the sun even for a few seconds feels like my skin is burning from the inside out. I wish I could crawl out of my own body just for a few moments of relief but I’m trapped. I delayed seeing my doctor for over a month because I knew what this meant for me…prednisone. Of course prednisone does wonders for inflammation but the side effects can be very hard to manage at times. I don’t love how I feel when I’m taking it, I feel like a completely different person. I’m hoping this time around will be kinder since I’ve been prescribed a lower dose than normal (25mg/day). Even at this dose it has been affecting my sleep. I’m up at all hours of the night more often than not. My appetite is through the roof and I feel “wired” and full of energy despite my lack of solid sleep. I’m back on all the preventative medication I was so happy to be rid of. I’ll be considered immunocompromised for the months to come so I must take extra caution at work and in general to make sure I stay healthy. Just in time for flu season.

I had a skin biopsy recently on a lesion on my stomach that turns out to be basal cell carcinoma. As far as skin cancer goes this is a slow growing type but with my history, it needed to come out sooner rather than later. The doctor removed a mole on my hairline as well that turned out to be basal cell. They were unable to remove it all so in the new year I will have to have the procedure repeated. My family doctor has referred me to a Dermatologist in the area to keep a closer eye on my skin changes in the future. My Hematologist appointments are back on a monthly basis.

On a more positive note, I have accepted a permanent full time job as a Lab Technician at the Niagara Falls hospital. I will finally receive all the perks of being full time including benefits, paid vacation and sick time. This is a huge relief and something I’ve been working towards for the last 8 years.

When I first started writing about my experiences it was a way for me to keep track of all that was happening. There’s something therapeutic about putting your negative emotions into words and trying to make sense of it all. Over the years it’s helped me keep track of dates, timelines, appointments etc. It’s helped me keep track of the progress or lack of with my cGVHD. Eleven years ago I came to the internet in search of some sort of guideline or any relatable information on what my life may look like after my stem cell transplant. I find there is a ton of information on what to expect in the first 100 days post transplant but very little beyond the 2 year mark. I am grateful to be this far out, but sometimes feel as though my demographic is forgotten about. I feel helpless at times after exhausting all the possible treatment options. I’m currently working with my Hematologist to get me back on Jakavi but I need to fail first line therapy first, or wait until I can be enrolled in yet another clinical trial. Of course I know no two people are alike and everyone’s journey is different but I hope someone who is in a similar situation can find some sort of peace from my writing. Though it may not always be positive, it’s real.