Since my diagnosis, my mission has been to fight back

My journey with MDS (myelodysplastic syndromes) began in December 2007 when a game of volleyball with my youngest daughter left my arms bruised from wrist to elbow. This along with frequent headaches and fatigue prompted me to schedule an appointment for a physical. Little did I know my life was about to change forever.

We were getting ready to depart on a cruise to Cabo San Lucas, Mexico to celebrate my in-laws’ 50th anniversary; however, my hematologist hematologist: (hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs. wouldn't allow me to go until a bone marrow biopsy bone marrow biopsy: A medical procedure to remove a small piece of solid bone marrow using a needle that goes into the marrow of the hip bone. The solid bone marrow is examined for cell abnormalities, the number of different cells and checked for scarring of the bone marrow. was done. After receiving the results, he suspected a vitamin B-12 deficiency. B-12 injections helped for a short time, but then my counts began to slowly decline, especially my platelets.

After six long months and numerous tests, I was finally referred to a hematologist at Stanford University Hospital in Palo Alto, California. I was told I had MDS, and a bone marrow transplant bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… was the only known cure. It was a lot for my husband and me to absorb. We somehow managed to hold it together through the appointment, but as soon as we got to our car, we just held each other and cried. I was only 47! I couldn't help but wonder if I would ever get to see our youngest daughter graduate from high school or even hold our first grandchild. I couldn't bear the thought of leaving my family!

Because I was in a higher risk classification (intermediate-2) and my only sibling was my half-brother, the search for an unrelated donor unrelated donor: A donor that is not a sibling or other familial relation of the patient (recipient). match began. At the time, our youngest daughter was 14, and Stanford was four hours away from our home in Redding, California. We had so much to do to prepare for the transplant, so I left my job as a registered dental assistant. My counts then stabilized. I was able to hold off the transplant for nearly two years. Then another chromosome aberration (monosomy-7) appeared.

I was admitted to the bone marrow transplant unit at Stanford University Hospital on May 17, 2010 to begin the preparative regimen for transplant, and on May 25th, I received the stem cells stem cells: Cells in the body that develop into other cells. There are two main sources of stem cells. Embryonic stem cells come from human embryos and are used in medical research. Adult stem cells in the body repair and maintain the organ or tissue in which they are found. Blood-forming (hemapoietic) stem… of my 47-year old German donor. I encountered a few setbacks that kept me in isolation longer than expected. A blood infection (sepsis) sent me to the ICU for three days. I watched the days pass by on a giant calendar that showed my daily blood counts and words of inspiration from the nurses. I had hoped to be out in time to spend the Fourth of July with my husband, but that date passed.

On day +44, I was released to the apartment we had rented nearby. At first, my husband took me to the infusion treatment area daily for blood draws and to receive needed transfusions. When he returned to Redding to prepare for my homecoming, I was moved to my parents' home, about 30 minutes from Stanford.

Eight months following my transplant, I was given the devastating news that I had relapsed, and I was given a prognosis of a few weeks to maybe a few years. I had not even recovered from my transplant and was now facing chemotherapy chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… . I began receiving azacitidine azacitidine: It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Azacitidine is approved by the U… (Vidaza®), but my counts were having a hard time recovering. I remember being so sick that I didn't even want to get out of bed. I was nauseated and had no appetite. My family was begging me to eat. At times, I had no desire to continue living, but they refused to let me give up.

I was giving myself insulin and G-CSF (Neupogen®) injections and taking countless medications. I received numerous blood transfusions blood transfusions: A blood transfusion is a safe and common procedure. Most people who have a bone marrow failure disease like aplastic anemia, MDS or PNH will receive at least one blood transfusion. When you receive a blood transfusion, parts of blood from a donor are put into your bloodstream. This can help some… and over 100 platelet platelet: The smallest type of blood cell. Platelets help the blood to clot and stop bleeding. Also called a thrombocyte. transfusions. Eventually, things started turning around. Our second granddaughter arrived in February 2012. I started pushing myself to get better so that I could be present at our youngest daughter's high school graduation and our middle daughter's wedding a few months later. My family kept dangling these carrots out in front of me to keep me fighting.

I recently completed my 34th cycle of azacitidine and have not needed a transfusion in over 2 1/2 years. It has now been four years since my relapse, and on May 25, 2015, I celebrated the fifth anniversary of my stem cell transplant (re-birthday). I tolerate chemotherapy pretty well now and take medication to mitigate the side effects. When it is no longer effective, we will have to look at other options, but I am trying to remain optimistic.

I would not have made it this far without the support of my family. I am also extremely grateful for the incredible gift of life that I received from my donor, Michael, and the outstanding care I have received from all of my doctors and nurses at Stanford University Hospital, Mercy Oncology Center, and Mercy Medical Center in Redding.

Since my diagnosis, my mission has been to fight back. For five years, I led a Relay for Life team called The Marrow Mob, and this past November, I participated in a Be the Match 5k Walk/Run in Sacramento. If my good health continues, I would like to become involved in Hope, Steps, and a Cure. I will not let MDS get the best of me. Every day may not be a good day, but there is something good in every day.