Life as a myelodysplastic syndrome survivor: New beginnings
The day before Easter, my husband Wade and I were outside doing yard work. Thanks to the drought, there was plenty of dirt from dust storms and the plants and grass were suffering. It wasn't a pretty sight.
The following morning I noticed one lonely, lovely purple flower growing along the driveway. For me, it was a sign of new growth, hope, rebirth and new beginnings. The sort of the thing we're mindful about on Easter. It was a sign. I was in awe.
Two days later, Wade's daughter gave birth to a girl named Ella. It was another new beginning. Since then, there have been new beginnings everywhere in my great, big, wonderful family and families of friends. There have been relationships mended, old friendships renewed, new friendships nurtured, new jobs and new opportunities and school graduations.
And for me, there has been a rebirth in my health. At my appointment at MD Anderson a couple of weeks ago, everything was good. I had my blood checked and received the most normal blood test results I've had in years.
As a result, my doctor Chitra Hosing, M.D., is letting me try to slowly wean off my immune suppressant drug, sirolimus.
When I tried this last fall, it didn't work well and Graft Versus Host Disease (GVHD) set in quickly. I had liver issues and was put back on the drug.
Recovering from my a stem cell transplant
May 24 was my second birthday. Exactly two years ago, I received stem cells from my donor, Robert. What a journey it has been.
During those two years, I suffered temporary blindness and migraine headaches from drug reactions to tacrolimus and cyclosporine, terrible side effects from busulfan and anti-thymocyte globulin therapy (ATG), weight loss of 40 pounds, GVHD on my skin, in my upper GI and lower GI tracts, liver and gums, muscle weakness and foot-drop from the steroids for GVHD, deep vein thrombosis in my left leg and a rare virus that we stem cell transplant patients are extremely unlucky to get -- the dreaded BK Virus.
Then there are all of the emotional issues I dealt with. Some of the most difficult were friends that moved on without me, chemo brain and dealing with depression and forgetfulness.
But, I'm not griping. With my wonderful husband, Wade, constantly by my side, I devoted all of my energies, which were mostly spiritual rather than physical (fellow survivors will relate to lack of energy), to getting through, getting by and getting well.
Each step brings new hope
Each baby step offered new hope. Baby steps turned into more normal steps and sometimes even happy feet.
Now that I'm two years old, I want others recovering from a stem cell transplant to know that all of those trying times are worth it.
Be steadfast, hopeful, positive and kind, appreciating each day and turning baby steps into happy feet. We can have positive outcomes when we have positive attitudes.
Speaking of all of these new beginnings, Robert, my donor, is my life saver. Without the complete and selfless act of love and compassion with which he gave me -- a total stranger -- his stem cells and a new chance at life, I wouldn't be writing this post.