My journey with MDS began in March of 2014. My husband, Bill and I flew to San Diego and then took a beautiful drive through the San Bernardino mountains to Indian Wells. We had tickets to the Indian Wells professional tennis tournament. I was especially excited because we were going to get to see Rafa Nadal play. We arrived on a Friday night exhausted from a long day of travel. I remember not feeling very well but went to dinner and then bed hoping a good nights sleep was all I needed. Bill was up bright and early the next morning. Although we had tickets to see Rafa play that night, Bill went in search of tickets for the day sessions. I realized after he left the hotel room that I literally could not get out of bed. I googled altitude sickness as I was self diagnosing the sudden onset of my fatigue. I slept all day and forced myself up and on the bus to the stadium to meet Bill for the night session to see Rafa play. This was a bucket list moment for me and I wasn’t going to miss it.
Upon our return to Nashville, I had an appointment for my annual physical with my general practitioner. I told him about my episode of fatigue while on vacation. He said everything checked out but he would be in touch with lab results from bloodwork. A week or so later I received a letter that my blood was showing signs of anemia and I needed to return for more specific testing for vitamin deficiencies. A few days later, I received a call that changed my life. He said I didn’t have a vitamin deficiency and that he was referring me to a blood specialist for further testing. I googled the specialist and my heart almost stopped when I saw he was sending me to an oncologist.
My oncologist couldn’t have been nicer or more honest. After additional blood work, a PET scan and a bone marrow biopsy I was diagnosed with primary MDS. The fear that I experienced at that moment still resonates with me today. I learned that I was young at age 58 to have this rare form of blood cancer. My SF3B1 mutation with ringed sideroblasts put me in the low risk category of MDS which meant that I was not at risk for developing leukemia. It also meant there were currently no treatment options. So l left the oncologist that day in May of 2014 with a diagnosis of bone marrow cancer with a plan to return every 8 weeks for bloodwork. As long as my numbers stayed within a certain range, I would not qualify for any of the available medical treatment protocols for MDS which was a good thing. The best advice he could give me was to “just go live my life”.
My life at that time was very busy and blessed. I was a wife to a very special man, mother to a beautiful 24 yr old daughter, Carly, and two precious King Charles Spaniels as well as a daughter to two wonderful aging parents. I was CFO of a nonprofit called Mending Hearts, Inc. which is a residential treatment facility for indigent women. I also had been a competitive tennis player for 20 years.
I needed to learn more about this disease. I found the MDS Foundation online. I requested information and they sent me the Building Blocks of Hope, which I still use as a resource today. I have attended three of their patient forums and participated in both Boston walks. The staff at the MDS Foundation is a group of incredible women who have given me support and hope and I’m so very grateful to each of them. I’ve tried volunteering for MDS research studies but so far I’ve not qualified since I’ve not had any type of treatment. Instead of focusing on my illness, I’ve been trying to focus on educating myself and connecting with others in the MDS community. I’m so excited that Nashville will be hosting a MDS Awareness Walk in the fall of this year! It’s so important that we bring awareness to this devastating disease.
I also searched out alternative treatment options in an attempt to improve my health. I began seeing a doctor of naturopathy in January 2015. I still see her twice a month for lymphatic massage, O2 therapy and bemer mat sessions. She advices me on nutritional supplements that address my suppressed immune system. She also encourages me to eat healthier. I have added Pilates and weight training to my exercise regimen. Are any of these things actually helping my MDS symptoms? I can say that when I adhere to the regimen I have more energy. I have succumbed to just one or two infections a year and my blood levels have remained about the same since 2014. I believe that being proactive about my health has given me a feeling of empowerment and it’s been a way for me to actively manage my disease.
I have tried not to change my life dramatically following my diagnosis. I experience some fatigue most days and shortness of breath when walking if the terrain is not flat. I’ve found that I’m more susceptible to infections. I’ve gradually learned what I need to do to manage these symptoms. I did quit my job in the summer of 2014. My parents’ health was beginning to fail and I wanted to be able to devote more of my time to them. My sweet mom passed in 2016. I miss her so much. My dad celebrated 93 years in October of last year. He has multiple health issues and is now living in a skilled nursing care facility but has the greatest attitude and I treasure every minute I get to spend with him. I am still playing competitive tennis, although not at the same level I played when first diagnosed. My visits to the oncologist are still just every 8 weeks for bloodwork and for that I’m most grateful.
My husband and daughter have been my rock and they are the reason that each day is a blessing for me. They encourage me to do all that I can but are so supportive when I need to slow down. MDS has had a positive effect on how our family chooses to live our daily lives. MDS was a huge wake up call that life is short and each day is a gift not to be taken for granted. I keep my bucket list close by and am constantly updating it. It keeps me hopeful and focused on looking forward. I still experience the fear that comes with having MDS, but that fear does not keep me from following my doctors orders to “go live my life”. I realize I’m one of the luckier ones with a MDS diagnosis and that my prognosis is better than most people in the MDS community.
