You have WHAT? Explaining MDS

Just my luck to get something no one understands! "You have WHAT? MDS? Don't you mean MS?" people have said to me.

No, I have a type of blood cancer called myelodysplastic syndromes (MDS). "I heard you have bone cancer," an acquaintance said when she saw me. I knew why she thought that. MDS is a type of blood cancer caused by bone marrow failure.

I explained MDS to a friend over the phone, and I told her it used to be called preleukemia. "Oh, well, it's good you don't have cancer yet," she said dismissively. I explained that I did have blood cancer because my bone marrow did not produce enough red and white cells. I read that one in three patients, MDS can progress to a rapidly growing cancer called acute myeloid leukemia (AML).1

MDS explained

On June 2, 2017, my oncologist told me the bone marrow biopsy results two weeks earlier. A bone marrow aspiration is when they stick a needle into your bone and draw out a bone marrow sample. (Marrow is the spongy tissue located within the middle of certain bones.) Not awful, but not a walk in the park either. I had never heard of myelodysplastic syndromes. I had to learn how to pronounce it, spell it, and explain it. Myelo is a Greek word meaning marrow. Dysplasia is a medical term that refers to the abnormal appearance of cells when viewed under a microscope.  Myelodysplastic syndromes are some conditions that can occur when blood-forming cells in the bone marrow become abnormal.2

You don't look sick!

I can't fault people who act like they don't believe me when I tell them I have cancer. I had a neighbor years ago who had cancer, and poor Wanda looked like a walking skeleton wearing oversized clothes. There are more than 200 different cancers. So consequently, our cancers will look differently. In the movies, they always show cancer patients as skinny and bald. I haven't been thin since I was eleven years old, and I have thick hair.

A young lady said to me, "I guess the worst thing about having cancer would be losing your hair to chemo." No, the worst thing would be losing your life! Hair will grow back. However, when I was young and had long blond hair like Hannah Montana, I would have thought the same thing.

So when are you going to get well?

I have had people ask me if I were in remission because they haven't heard me discuss treatments. They, of course, think I look healthy. "I thought your cousin was going to donate bone marrow to you," one of my former coworkers said. Yes, he did offer, but I'm not a candidate for a bone marrow transplant. There is no magic pill or quick fix for MDS.

Watch, wait, pray, and learn

Symptoms for MDS may include:3

My current treatment plan is "Watch and Wait." I have complete blood counts done every three months. Needles don't bother me anymore.

"Aren't you scared?" a young person asked me. Sometimes, yes. I try to remember to pray when I am afraid. The MDS Foundation sponsors webinars that have helped me learn a lot. I remind myself that I am living with MDS, not dying with it.

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