Myelodysplastic Syndromes – I Am Not Making This Up!

Do you remember how "The Tonight Show" host Jay Leno would preface a funny story by saying, "I am not making this up!"? Although it isn't funny, that's how I feel when explaining myelodysplastic syndromes (MDS). Since my diagnosis in 2017, MDS sounded like something made up for a Star Trek episode. It sounds like something Mr. Spock would acquire.

I needed to learn about MDS

"Myelo" is a Greek word meaning marrow. "Dysplasia" or "dysplastic" is a medical term for abnormal shape and appearance. MDS (myelodysplastic syndromes) is a group of cancers affecting blood and bone marrow. Bone marrow is inside some of your bones. It's where your body produces all of your blood cells. When you have MDS, it causes your marrow from making enough healthy blood cells. In other words, your bone marrow is falling down on its job!¹

I wondered what caused my MDS

I get this question a lot. At first, I was in denial about my diagnosis because I had heard about secondary MDS. People who had radiation or chemotherapy for previous cancer can develop secondary MDS. So why would I get MDS? I thought.

Most of the time, doctors don't know what causes MDS. Nine out of 10 people have de novo MDS, meaning no explanation exists for its development.²

A blast is not a party!

MDS makes you sick because it stops your body from making enough healthy blood cells. Unfortunately, when you have MDS, you have too many immature (not fully developed) cells called blasts.^1,2

According to the American Cancer Society, MDS is divided into subtypes based on blood and bone marrow tests, along with a few other factors.³

Symptoms of MDS

Low red blood cells (anemia) can make you tired and run down. Low white cell levels (leukopenia or neutropenia) raise your risk of infection, and low platelet levels (thrombocytopenia) can make you bruise or bleed easily. I have communicated with other people with MDS through some Facebook groups, and fatigue is a common shared symptom. We are sick and tired of feeling sick and tired.^1,2

Who gets MDS?

More men than women get MDS. It is also more common in people over the age of 60 and among people whose ancestors are from Europe.²

"Does MDS run in your family?" a friend recently asked. It typically does not run in families and cannot be passed on to your children. You can't catch it from someone else.²

Our future with MDS

A cancer diagnosis is not good news, but it isn't always a death sentence. Some people die with blood cancer, not because of it. When I visited MD Anderson Cancer Center in Houston in 2017, my oncologist told me that more treatments for MDS are available than 2o years ago. That's great news!

The only cure for MDS is a bone marrow transplant. However, not everyone is a candidate for a transplant. So we have to figure out how to live with MDS. I retired one year earlier than I had planned because of fatigue. I might have prolonged my life.^1,2

Self-care is not selfish!

Remember, taking care of yourself is a good thing! So first, plan your work, then work your plan.

• Refrain from overworking. Your health is more important than any job.
• Tell people how they can help you. For example, you may need help cleaning out a closet. After you and your friend finish the job, you might treat yourself to lunch. It could be a fun day.
• Don't be afraid to say no when someone is asking too much of you. Sorry, friend, I can't get up at 4:30 am to drive you to the airport. They might be angry, but a true friend will understand.

I have learned a lot about MDS. Some people say they don't want to know about their disease. I can't imagine. Others, like me, read like they are studying for their college finals. MDS was foreign to me when I was first diagnosed. I had to learn how to pronounce it (my-uh-lo-dis-plastic), spell it, and explain it. I am not making this up!