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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: anonymous donor
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
I am posting this lighthearted, healthy photo of me, as I fully aim to be healthy and cured of cancer forever! I encourage you to think of me this way – thank you. Unfortunately, my road to the cure for … Continue reading
Dear Friends, As you know we’ve been waiting for news on my bone marrow biopsy which was done twice because of inconclusive test results. Unfortunately, on Tuesday the Stanford doctor told me he is 99.5% sure that my condition is … Continue reading
My bone marrow biopsy information came back today, and unfortunately the results were “inconclusive,” so the sample now is going to Stanford for further study, and I need to get additional tests and another biopsy at Stanford next week. While … 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
Some people watch the stock market, examining each up and down and analyzing what it means. I watch my blood counts… During my last visit to the Stanford Clinic, Dr. Lowsky said that I don’t need to have any more … Continue reading
Hi everyone, this is Mary Lou, Deb’s Mom. I haven’t written in a while since Deb has been feeling better and able to write her own blogs. The updates that Deb writes appear under the “Deb’s Blog” tab, so be … 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
I’m honored that the Marin County newspaper the Pacific Sun published a cover story this week on my recovery from leukemia and my environmental and health career since the 90’s — improving walking and bicycling in Marin and nationwide. You … 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
I heard the absolutely best news ever on Wednesday, June 18 – which was exactly eight months after I was admitted to Kaiser Permanente to start chemo for acute myeloid leukemia. My Stanford doctor, Robert Lowsky, MD, met with my … Continue reading
I must say that my daughter Deb is a very brave gal. I was queasy just watching her procedures yesterday, but she handled everything amazingly well. Even with morphine, ativan and lidocaine, there was still pain. Luckily Deb has a … 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
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