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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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Tag Archives: ICU
Deb was released from ICU last week and moved back up to her regular floor of the hospital. The care in ICU was excellent, but it is comforting to be back where we know all the wonderful nurses so well. … Continue reading
It’s been a tough week for Deb — and Andy and me too. Saturday morning Deb’s breathing tube was removed and she is completely off the ventilator and breathing on her own. However she is still experiencing labored breathing and … Continue reading
Last night the doctor lowered the sedation level for Deb, and she became fully awake and alert and communicated with us by writing questions. This morning they did a spontaneous breathing trial by turning the ventilator off and allowing Deb … Continue reading