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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: GVHD
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
In the world of bone marrow transplants (BMT), everything is measured in terms of how many days have passed since my “new birthday,” the day I received the life-saving stem cells from my anonymous donor who we affectionately call “Mr. … Continue reading
It’s been 46 days since my bone marrow transplant at Stanford Hospital, a procedure that has saved my life. As I’ve reflected further on my journey to heal from acute myeloid leukemia over the past seven months, it’s become clear … Continue reading
Deb is doing well. She is now Day +38 and her energy level is better. She is not napping as much as she was in the beginning. Her rash from the Graft vs Host Disease (GVHD) is almost gone, but … 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
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