Living with my Star Trek Illness: Understanding Myelodysplastic Syndromes

June 2, 2017, I learned that I have myelodysplastic syndromes (MDS). Doesn't that sound like something written for a Star Trek episode? Maybe something Mr. Spock would acquire? Myelo is a Greek word meaning marrow. Dysplasia or dysplastic means abnormal shape and appearance. I have a type of blood cancer because my bone marrow is falling down on its job.

Receiving a MDS diagnosis

They say diagnosing MDS can be difficult. A sign is a change in the body that the doctor sees in an exam or test result. A symptom is a change in the body that the patient can see or feel. My blood work had shown low white counts and low red counts for years, but I felt okay most of the time. I did look pale, but I always thought that was my Swedish heritage. Finally, in 2016 I told my doctor that I didn't feel well. I think I must have one of the best doctors because not only did she listen to me and study my blood reports, but she also sent me to a very fine oncologist.

May 2017, I had a bone marrow biopsy done in my hometown of Tulsa, Oklahoma. Six months later, I had another one at MD Anderson in Houston, Texas. A bone marrow aspiration is when they stick a needle in your bone to withdraw some of your bone marrow. Not awful, but not a walk in the park either. I learned that I have blasts in my bone marrow. Blasts are cells that are not mature. I have immature blood cells. Go figure. I had to learn to live with my Star Trek illness.

Making adjustments while living with myelodysplastic syndrome

I decided to retire from teaching in 2017 when I felt my energy was drained. Actually, just a week before I received the bad news I checked out of school for the last time. "You have taught 39 years!" a young teacher said. "Why not make it 40?" she suggested. I had to explain that the stress of the job felt like it was killing me. Schools were being graded on things we really couldn't control and there was too much pressure for all students to perform proficiently on the state achievement tests. Even my third graders with severe learning disabilities were expected to score satisfactorily on reading material that was on their frustration level. As much as I loved teaching, I made the decision that my health was more important.

I never thought a lot about what my bone marrow does. Now, I visualize the activity in my bone marrow as the stem cells produce and push their way into my bloodstream and hope for enough white cells to fight infection, enough red cells for energy, and enough platelets for my blood to clot and not have so many bruises on me. I have stopped wishing my dress size was smaller and started praying that my bone marrow would work correctly.

But you don't look sick!

Cancer or the treatment of cancer is not one size fits all. There is no quick fix. Yes, it's great that your sister-in-law treated her breast cancer by eating healthy. God cured you of your tumor because you asked him to? How wonderful! Yes, of course, I pray. No, I don't believe God wants to punish me. Cut out all sugar and eat lots of blueberries, you say? Sometimes this unasked for advice makes me feel stressed. Darn! I guess I drank too many Dr. Peppers and didn't eat enough broccoli.

Don't you hate receiving a backward compliment? Women will know what I mean. Example: You're not as fat as you used to be is not a nice thing to say. "You don't look sick!" is not a compliment. So you want me to look as bad as I feel? Make-up and hair dye help. Remember, we never know what a person's struggles are.

I feel like I have been studying all of my life. I did a ton of homework from elementary school through college. As a teacher, I was always learning about students' medical conditions or learning styles. Now, I feel like I'm studying to save my life! One day I read and feel hopeful because new medications are being developed. Another day I read about how someone lost their battle with MDS. Hey, all you brilliant people, cancer is the second most common cause of death in the United States! We don't need any more apps for our phones. We need a cure for cancer! Invent that.

Finding my bone marrow donor

Since my retirement and diagnosis, my relatives check in on me more often. Shortly after my trip to MD Anderson, my cousin called and said, "I've been reading about what you have. If my bone marrow is a match for you, I will be a donor." This is the same cousin that I gave a black eye to when I was eight years old! Lesson learned: Be nice to your kin.

I meet with a group of mostly retired teachers each month for dinner. We are like the Red Hatters without the hats. I have known many of the ladies for thirty years. Everyone has challenges in their life; we support each other.

Live long and prosper!

I keep busy. I attend Tai Chi classes. Tai Chi is a slow and gentle form of exercise. I volunteer for Meals and Wheels and Centenarians of Oklahoma. I mail out birthday cards for those over the age of 100. I often wonder if someone will address a card for me in the year 2057. It could happen. My favorite volunteer job is reading aloud to second graders once a month. When I keep a schedule and have places to be and things to do, it keeps my mind off of my MDS.

My treatment plan is called "Watch and Wait" and I have blood testing every three months. I always study my blood levels the same way I studied my students' reading test scores. If my blasts increase, I will begin a cycle of Revlimid. I try to be proactive about my health, not obsessive. I am careful about what I read on the Internet regarding MDS and I won't trust Dr. Google. I am living, not dying with my Star Trek illness. As Mr. Spock would say, "Live long and prosper!"

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