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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: graft vs host disease
Andy and I and Deb’s friend Christopher went with Deb today to Stanford, where she received her donor lymphocyte infusion (DLI) as an outpatient. The lymphocytes, a type of white blood cell, were collected from Deb’s original donor, Mr. International, … Continue reading
Deb has been out of the hospital for a month now, and I know an update is long overdue. Deb was extremely weak when she came home, and is still struggling to do basic things like walk up stairs alone. … Continue reading
On July 17, I had an awesome visit with my Stanford bone marrow transplant doctor, Dr. Robert Lowsky. The date of the appointment was exactly nine months since I was diagnosed with leukemia; now the cancer is gone and the … Continue reading
June 27, 2014 was the magic mark of 100 days after my bone marrow transplant! This means that I made it through the most difficult phase of healing from leukemia, but my doctor keeps reminding me to take it easy … Continue reading
Good news! The plan is that I’m moving home soon! I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April … Continue reading
Sunday morning, May 25, Deb woke up with a queasy stomach. She didn’t have much appetite and couldn’t finish her breakfast, which is usually a fairly substantial meal for her. Andy was here, and they had planned to go to … Continue reading