Living with Myelodysplastic Syndromes for Seven Years

Seven years ago, I learned that I have myelodysplastic syndrome (MDS). I didn't know what this strange-sounding disease was! I had to learn how to pronounce, spell, and explain it.

Here is my elevator speech. (An elevator speech is the shortest way to explain your illness. Yes, brief enough that you can tell it to people while riding on an elevator.) Myelodysplastic syndromes are a group of disorders caused by the bone marrow not producing enough healthy blood cells.

Numbers do not predict the future!

The day I learned I had MDS, I asked about my life expectancy. My oncologist showed me a chart. Low-risk MDS patients usually live ten years after their diagnosis. WHAT?! I left that office thinking I'd better update my will and make final arrangements. I thought I was going to die in 2027.

My oncologist gave me some helpful information from the MDS Foundation. Their support was exceptional, and their staff went above and beyond, even calling to check on me. It was a comforting reminder that I was not alone in this journey.

Getting a second opinion

To determine my diagnosis, I had a bone marrow biopsy in May of 2017. Having a needle stuck in your hip bone is not a walk in the park. I'd call it an uncomfortable necessity. The first one I had in my hometown of Tulsa, Oklahoma, an anesthesiologist put me to sleep. I was wide awake for the second one at MD Anderson in Houston, Texas. The young nurse was friendly and competent. "You did very well, considering it was only your second one!" she said. Oh, my goodness! How many bone marrow biopsies will I have? So far, only two.

Blasts are immature blood cells usually found in low numbers in the bone marrow. My oncologist at MD Anderson explained that I had too many of these immature cells or blasts coming from my bone marrow. In other words, my bone marrow was failing to do its job. No wonder I was often tired!

First, watch and wait

Watch and wait is often used when MDS is considered low-risk. For four years, I had complete blood counts (CBC) every three months and saw my hometown oncologist to review the results. This approach involves closely monitoring the disease without immediate treatment. For the past three years, I have been having CBCs every month. When my hemoglobin is below ten, I receive an injection to boost it.

These injections delay transfusions or chemotherapy. From what I hear, you almost have to be a millionaire to afford some of these medications for treatment. I am glad to avoid transfusions or chemo, at least for now.

Retirement as self-care

I thank my primary care physician for being proactive regarding my annual blood counts. Although my counts had been low for years, I didn't have symptoms. Finally, in 2016, I told my doctor that I wasn't feeling well and I had some dizzy spells. That's when she referred me to an excellent oncologist. I was in my 39th year of teaching elementary special education students in 2017 when I decided to call it a career for the sake of my health. I have never regretted it.

A friend recently told me, "You still look the same from our teaching days. You don't look sick! You even still dress the same." If I thought I looked sloppy, I would feel worse! Even though my energy might be low, I still wear make-up, fix my hair, and dress for the day. It's one of my automatic routines that has helped me function.

Life will change

What would I tell someone newly diagnosed with MDS? Life will change, but for most, this isn't a death sentence. (I no longer believe I will die in 2027.) The good news is that they are developing new treatments for MDS. So, take care of yourself physically, mentally, emotionally, and spiritually. Just because we have MDS doesn't mean we have an expiration date!

This Bible verse has always helped me. Do not be anxious about anything, but in every situation, by prayer and petition with thanksgiving, present your requests to God. Philippians 4:6