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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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Monthly Archives: March 2014
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
On Day +2 I was moved into a private room, and on Day +3 I wrote this poem. There is a tree outside of my hospital window, Green with light dancing through its gentle leaves. I watch it against the deep … Continue reading
Deb is now at Day +3 (Saturday) and in the recovery stage, which begins after the stem cell infusion. Her blood counts have dropped as her existing cells are dying off and her body is not yet making new cells. … Continue reading
Today was an intense, emotional and wonderful day. Deb began receiving her donor’s stem cells at 1:23 pm PDT, and the infusion lasted just under an hour. Andy and I were present along with three of Deb’s closest friends. We … Continue reading
Please join me in putting energy into my intention (detailed below) for being cured from acute myeloid leukemia. On Wednesday, March 19 at about 12-Noon PDT, I will be receiving a bone marrow (stem cell) transplant at the Stanford Cancer … Continue reading
March 19 is Day 0, which is often referred to as a new birthday for bone marrow transplant patients. All that we know about Deb’s donor is that he is 32, a male, and international. Well, I guess we do … Continue reading
On Sunday Deb began to receive her second chemo drug, Cytoxan, which is given on Day -3 and Day -2. This is a strong chemo drug, and Deb was feeling tired and out of it all day. Saturday we took … Continue reading
The day Deb receives her stem cell transplant is referred to as Day Zero (Day 0). The days prior to Day 0 are “minus” days, and these are the days when the preparative regimen is given to prepare the body … Continue reading
Hi, this is Mary Lou (Deb’s Mom). Yesterday Deb and I moved out of the hotel where we stayed for Deb’s outpatient procedures. Deb was admitted to the hospital, and I have rented an apartment in the HOME Apartments, which … Continue reading
After thinking for months about the day I would be admitted to the Stanford Cancer Center for my bone marrow transplant, it has finally arrived! I feel as if I’m going on a long journey into the unknown, and I … Continue reading
Deb and I spent Wednesday and Thursday at Stanford Cancer Center for pre-admission appointments. Deb and Andy had been here several times already, but this was my first visit, and my first opportunity to meet Deb’s bone marrow transplant doctor, … Continue reading
Hi everyone, this is Mary Lou (Deb’s Mom), and I’ll be writing most of the health updates. We appreciate all the love and support you have given Deb so far, and know that it will continue through her bone marrow … Continue reading