Coping with Life Changes and MDS

On December 7, 1941, my grandparents were on their way to see a movie at the Coleman Theatre in Miami, Oklahoma, when they discovered that the Japanese had bombed Pearl Harbor. They turned around and went back home because they knew World War II would start. They planted themselves by the family's radio for the rest of the day. My grandparents were thinking about what would happen to their teenage son (my uncle). Their world and thousands of other families' worlds were going to change.

November 22, 1963, I was a second-grader when the principal of McKinley Elementary in Tulsa, Oklahoma, announced on the intercom, "Boys and girls, give me your attention, please! I have some sad news. President Kennedy is dead." I learned a complicated word that day for a seven-year-old: assassination. I remember thinking, How awful! Caroline and John Jr. had lost their daddy because an angry man in Dallas, Texas, had murdered him. Their world was going to change. Our country grieved along with the Kennedy family.

On June 2, 2017, my oncologist pulled her chair up next to mine and said, "I was surprised by the results of your bone marrow biopsy." At the age of 61, I learned two new words: myelodysplastic syndromes, or MDS. My world was going to change.

What is MDS?

Myelodysplastic syndromes (MDS) refer to a group of similar blood cancers. Two standard features characterize each of these disorders. First, the bone marrow cannot provide enough normal blood cells into circulation.  Second, in all MDS subtypes, the marrow produces misshapen blood cells. In other words, my bone marrow is not working correctly.

The bone marrow carries out several functions, including producing the three significant blood cells. Red blood cells transport oxygen from your lungs to your body's tissue; the white blood cells fight infections, and platelets help form blood clots to stop bleeding.

When you have MDS, a blast is not a party!

As a teacher, many of the students that I taught were immature. I am not insulting them, it's just how things were. Besides, it's not a crime to be immature when you are only nine years old. Complete blood counts (CBC) tell me that I have too many immature blood cells called blasts. These cells show up in my bloodstream as not fully developed. Go figure.

Some people have asked me why I have MDS. How should I know?! When they ask this, I feel like they think I did something wrong. I wasn't a smoker, and I didn't abuse drugs. Did I drink too many Dr. Peppers, or maybe I didn't eat enough broccoli? I have read that in most cases, the cause for MDS is unknown.

How does MDS affect my life?

MDS makes me tired. I can't rush because I get dizzy when I hurry and I need a lot of sleep. So I sometimes fall asleep when I shouldn't. Example: church, waiting room for an appointment, watching a movie. You get the idea. Yes, MDS has turned me into one of those people who sometimes sleeps in church. Not good.

Pacing myself is the key to a successful day. Luckily, I was able to retire from teaching. So I select a few chores or an errand to take care of daily. My friends know to call the night before if they want to plan an outing. These days, I can't hurry to get ready.

I have Complete Blood Counts (CBC) monthly, which feels like I am taking a test that has no study guide. If my hemoglobin is below a specific number, I receive an injection to boost it. If this treatment fails, I will begin Revlimid. From what I hear, you almost have to be a millionaire to afford that drug!

Life is full of changes. No one escapes some disappointments and challenges. For generations, families have dealt with disasters, trauma, and health issues. We cannot control what happens to us, but we can control how we react to it. Best of luck to you!