My journey began in March of 2014. Will it ever end?
Before I had my full CBC blood test, my husband, Bill, and I flew to San Diego and then I remember not feeling very well, but I went to dinner and then bed, hoping a good night’s 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 searched for tickets for the day sessions.
After he left the hotel room, I realized I could not get out of bed. I googled altitude sickness as I self-diagnosed the sudden onset of my fatigue. I slept all day and was on the bus to the stadium to meet Bill for the night session to see Rafa play.
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 Full CBC Blood Tests and bloodwork. A week or so later, I received a letter that my full count test result was showing signs of anaemia, 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.
Could My oncologist have been nicer or more honest?
After additional CBC blood test 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 leukaemia.
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 Full CBC Blood testing and bloodwork. As long as my numbers stayed within a certain range, I would not qualify for any available medical treatment protocols for MDS, which was good. 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. I was a mother to a beautiful 24-year-old daughter, Carly. And also to two precious King Charles Spaniels. And I was a daughter to two wonderful ageing parents. I was CFO of a nonprofit called Mending Hearts, Inc., a residential treatment facility for disadvantaged women. I have also been a competitive tennis player for 20 years.
Do you want to learn more about this disease?
I found the MDS Foundation Full CBC Blood test online. And I requested information, and they sent me the Building Blocks of Hope, which I still use as a resource today. However, 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 also searched for alternative treatment options in an attempt to improve my health. AI began seeing a doctor of naturopathy in January 2015. I still see her twice monthly for lymphatic massage, O2 therapy and Bemer mat sessions. She advised me on nutritional supplements and regular Full CBC blood tests 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 helping my MDS symptoms? I can say that I have more energy when I adhere to the regimen.
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 he 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; I’m most grateful for that.
My husband and daughter have been my rock and are why each day is a blessing for me. They encourage me to do all I can but are supportive when I need to slow down. MDS has positively affected how our family chooses to live our daily lives. The Full CBC Blood test and, thus, 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 doctor’s orders to “go live my life”. I realize I’m one of the luckier ones with an MDS diagnosis and that my prognosis is better than most people in the MDS community.