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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: engraftment
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
It was one year ago today, on October 17, 2013 when I got a call that changed my life forever. Dr. Lori Kim, an amazing Oncologist from Kaiser Permanente called me at 11:30 AM to let me know that the … Continue reading
Happy Easter everyone! It’s another lovely sunny day in Stanford. Since we’ve been here, day after day has been beautiful and cloudless, one of the things that people love so much about California … unless, that is, you cannot be … Continue reading
This is Deb’s Mom again, Mary Lou, and I am happy to say that Deb is improving a little every day. It’s truly amazing when I think of Deb’s anonymous donor, a 32 year old man from Europe, whose blood-making … Continue reading
Today is Day +25 since Deb’s stem cell transplant – she is a quarter of the way through the 100 days that she is required to wear the HEPA mask whenever she goes outside. The mask is bulky and uncomfortable, … Continue reading
I am happy to say that Deb was discharged from Stanford Hospital late Tuesday afternoon. She was so glad to come to the lovely townhouse we are renting, and not be disturbed with beeps, taking vitals every 4 hours, etc. … Continue reading
It’s hard to believe, but we are actually starting to talk about when Deb will be discharged from the hospital! The doctors had said she would improve quickly when her white blood counts came up, and so it is. However … Continue reading
We were thrilled this evening when Deb’s blood counts came in and we learned that engraftment has started! (Engraftment is when the stem cells she received from her donor start growing and developing, and her bone marrow and immune system … Continue reading