MDS is a bone marrow failure disorder
MDS is a blood cancer
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My Story - Connie e. Connely

“Your doctor thinks you have cancer!” my mother exclaimed. “I have some of the signs of multiple myeloma, so we are ruling out the possibility“, I explained. “The office will call to set up the bone marrow biopsy”. They x-rayed my full body. I can now tell people that I’ve had my head x-rayed! I also had to collect my urine for a full day. Yes, we were able to rule out multiple myeloma. It turns out that I had something else.

I had my bone marrow biopsy on May 17, 2017. Waiting for test results is always hard. June 2, 2017, my oncologist pulled up her chair next to my mother and me and said, “I was surprised by the results.” Oh, no! What’s wrong? I thought. I learned a new word, myelodysplastic syndromes. Doesn’t that sound like something written for a Star Trek episode, maybe something Mr. Spock would acquire? I had to learn how to pronounce it, spell it, and explain it.

“It’s a good thing you retired from teaching,” my mother said. I had planned to teach for forty years. I made it thirty-nine years, so that’s still an accomplishment. Fall 2016, I felt like fatigue hit me like a ton of bricks. I would wake up tired in the mornings. The stress of state-mandated achievement testing for my third graders with learning disabilities affected my health, so I knew it was time to leave the profession.

June 2017, started a new chapter of my life. My oncologist gave me a list of trusted websites about MDS, so I immediately contacted the MDS Foundation. They sent a packet of information within a few days, and I even received a phone call from them! Learning makes you hopeful.

I feel like I have been studying all my life. I did a ton of homework from elementary school through college. As a teacher, I was always learning about my students’ medical conditions or learning styles. Now, I feel like I”m studying to save my life.

Fall 2017, I made a trip to MD Anderson in Houston, Texas, for a second bone marrow biopsy. Not awful, but not a walk in the park either. Luckily, my MDS is considered low risk. I learned about blasts in my bloodstream. These are immature cells causing my blood counts to be lower than preferred. I have 5q deletion MDS. I am glad that I obtained a second opinion because I would be in denial if I hadn’t. If the percentage of these blasts gets too high, I will begin a cycle of Revlimid. Presently, I am on Watch and Wait. Come on, all you brilliant people! We don’t need any more apps for our phones. What we need is a cure for cancer or at least some new treatment options. Invent that!

Shortly after my trip to MD Anderson, my cousin Scott called and said, “I’ve been reading about what you have. If I’m a match, I will donate bone marrow for you.” Tears came to my eyes. The same cousin that I gave a black eye to when I was eight years old had just offered me bone marrow as nonchalantly as if he were letting me borrow his lawn chairs for the weekend. I knew our grandparents would have been proud of him.

Scott’s older brother, Richard, has also been sweet to me. Despite his health issues, he has been kind to visit my mother and me when he is in the Tulsa area. I lost contact with these cousins after my father passed away in 1983. We reconnected through their mother in 2010. I think God had a plan for us to get back together.

Most days, I feel fine, but I have to pace myself and get plenty of sleep. When I retired from teaching, my friend Linda said, “People think a retired teacher is capable and has a lot of time on her hands, so you will have to learn to say no when asked to do too much.” Linda was right. I have to advocate for myself. I can help with Meals on Wheels, but don’t expect me to come running when someone cancels at the last minute. The low red blood counts cause dizziness when I try to hurry

I like to keep busy. I have traced my ancestry back to the Revolutionary War, so I am a member of the Daughters of the American Revolution (DAR). My state of Oklahoma honors those citizens who reach the age of 100, Centenarians of Oklahoma. They put me in charge of mailing out birthday and Christmas cards. I like to help with Meals on Wheels when it’s my turn, but I remind them that I can’t hurry.

My favorite volunteer job is reading aloud to second graders in Catoosa, Oklahoma.

As a teacher, I submitted articles to teacher magazines and had a few things published. I also took some writing classes during the summers. In 2019, I contributed two stories to the website Blood-Cancer. I received lovely comments about both pieces. January 2020, I started writing for them monthly. They say when life gives you lemons, make lemonade. I say, when life gives you blood cancer, start writing.

PERSEVERANCE IS A GREAT WORD TO USE. I WILL BE PROACTIVE, NOT OBSESSIVE ABOUT MY HEALTH. I WILL READ A LOT, BUT I WON’T TRUST DR. GOOGLE.

I have always believed that a positive attitude helps us achieve. In the classroom, I saw students who grew up in challenging homes still thrive. Perseverance is a great word to use. I will be proactive, not obsessive about my health. I will read a lot, but I won’t trust Dr. Google. Someday, I will throw darts at those lifeexpectancy charts. I plan to live for many more years. MDS is along for the ride.

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