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I'm blessed with a beautiful life, wonderful family and friends, and had an exciting career. But, in October 2013, I was suddenly stricken and diagnosed with acute myeloid leukemia (AML) following a two week illness not unlike a flu. My life changed immediately.
I was treated by Kaiser Permanente Hospital in San Rafael, California for months where I received multiple rounds of chemotherapy. This treatment did not knock out my AML and my only hope for a cure was to go to Stanford Hospital for a bone marrow transplant (BMT) in March of 2014.
The BMT was very intense and painful but I made it out of Stanford alive. I was doing great and growing stronger until November of 2014 when my blood counts again dropped. I am now being treated for a rare bone marrow condition called serous atrophy, which keeps stem cells from functioning/multiplying properly in my bone marrow. I lost a significant amount of weight and have intense fatigue, must avoid public places (due to infection risk), and as a result spend much of my time lying in bed.
I deeply want to live but desire to have a quality of life that includes dance, community, working for environmental/social causes, being able to enjoy time in nature and spend quality time with my beloved newlywed husband Andy Peri.
I am surviving on blood transfusions and am in a place of yearning to survive. I am also open to letting go of this life with grace should my options fade away. What carries me more than anything else is the dramatic, soul-enriching love of family and friends and my own love and acceptance of change and all that has come to pass.
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Monthly Archives: March 2014
Despite the pain and other side effects that Deb has suffered, the doctors and nurses continue to tell us that she is doing really well. The side effects are to be expected, and mean that the treatments are working as … Continue reading
Thursday was Day +8. Deb’s doctor had told her that this process would be tough, and he’s right, it is. Deb had a rough night Wednesday night, not much sleep. Her platelets were down to 6 so she had a … Continue reading
The worst days after transplant are Day +4 to Day +14. Side effects from the heavy doses of chemotherapy are starting to occur. Deb is also on two medications to help prevent Graft vs Host Disease (GVHD), and these cause … Continue reading
On Day +2 I was moved into a private room, and on Day +3 I wrote this poem. There is a tree outside of my hospital window, Green with light dancing through its gentle leaves. I watch it against the deep … Continue reading
Deb is now at Day +3 (Saturday) and in the recovery stage, which begins after the stem cell infusion. Her blood counts have dropped as her existing cells are dying off and her body is not yet making new cells. … Continue reading
Today was an intense, emotional and wonderful day. Deb began receiving her donor’s stem cells at 1:23 pm PDT, and the infusion lasted just under an hour. Andy and I were present along with three of Deb’s closest friends. We … Continue reading