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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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Compared to most of Deb’s hospital stays, this was a short one … but any number of days in the hospital is more than we want. Deb was released on Saturday after her latest chest x-ray came back clear. She … Continue reading
One thing Deb really hoped to avoid was going back into the hospital. For the past 7 weeks at home, Andy and I have done everything we could to keep that from happening. We’ve made sure that Deb receives all … Continue reading
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
Thanks to everyone who has been sending me positive energy toward healing my asthma and leukemia. Many of you know that I nearly died on the CT SCAN table at the end of January. I was brought back to life … Continue reading
People have been asking me (Mary Lou) why there haven’t been any recent updates, and the answer is simply that we have been very, very busy. The happy news I have to share is that Deb and her sweetheart Andy … Continue reading