Sandy’s son Greg here with sad news. After a life well lived, an inspiring fight, and a comfortable final week surrounded by loving family, my mom is at peace, having passed in her sleep the afternoon of Sunday, January 30. She was ready and not afraid, and she asked me to thank you for your friendship, love and support.

Hi I’m Sandy, and in January ’09 I was diagnosed with Myelodysplastic Syndrome at the age of 62. I’ve been through a year of chemo which stabilized me, but the disease was progressing so this February of ’10 I’ll be undergoing a bone marrow/stem cell transplant. I want to share my experience as a way of keeping my friends and family members up-to-date, and also to inform and hopefully inspire others dealing with MDS.

“Life isn’t about waiting for the storm to pass,
life is about dancin’ in the rain.”

There are some times quotes I randomly see that are especially appropriate for that time in my life. Whenever I have challenges, I know I will get the strength to persevere, adapt as necessary, and conquer. Then there is a rest period and another challenge presents itself. During this year of diagnosed MDS, this quote gives me strength and makes me smile as I run in the rain. I picture this happening in Hawaii!

I’ll be blogging regularly, and you’re welcome to join me as I “dance in the rain” and pursue my journey with a bone marrow transplant.

MDS and Me

Myelodysplastic syndromes (MDS) occurs when the bone marrow and stem cells malfunction. This results in the production of too many defective blood cells and not enough normal blood cells. Patients with myelodysplastic syndromes have low blood cell counts in at least one or more of the three blood lines: red blood cells, white blood cells , and platelets. Their bone marrow is usually hyperplastic, meaning there are too many poorly functioning blood stem cells in the marrow, but in some cases (like mine) their marrow is hypoplastic which means there are too few blood stem cells in the marrow, making the disease look similar to aplastic anemia. My marrow is hypoplastic. I have too few WBC’s and platelets.

  • Symptoms: Nearly half of people with MDS have no symptoms at time of diagnosis. When symptoms do occur they can include anemia, weakness, fatigue, headache, bruising, increased bleeding, rash, fevers, mouth sores and lingering illness.
  • Incidence and Diagnosis: MDS occurs at an increasing frequency in older people, but it can occur in children too. In less than a third of patients, MDS progresses over time to become acute leukemia. Diagnosis will be confirmed by first getting a Complete Blood Count (CBC) followed by a bone marrow biopsy. The average age of diagnosis is 70 years old, so I’m a little ahead of the curve but that’s good because it means I’m eligible for more kinds of treatments. MDS is diagnosed in more than 10,000 people in the U.S. each year.
  • Subtypes: There are several subtypes of MDS, mainly based on the percentage of immature blood cells, called “blasts,” in the marrow and in the bloodstream. I’ve got subtype refractory anemia with excess blasts (9%) and have a IPSS score of 2, an intermediate stage of the disease.
  • Treatment: Treatments for MDS vary considerably, ranging from supportive treatment of continuous transfusions to aggressive chemotherapy and the transplantation of bone marrow or stem cells. The latter is the fun ride that I’m on. : /