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What Friends Should Know About My MDS Journey

Last updated: December 2022

I was diagnosed with myelodysplastic syndrome (MDS) in 2017. Yes, it's a real thing. I've always thought it sounded like something from Star Trek, maybe something Mr. Spock would acquire. My oncologist explained that my bone marrow was not working correctly. My bone marrow was producing immature cells called blasts. This causes fatigue and difficulty fighting infection.

Life does not stop because of cancer. Bills have to be paid, laundry done, the house cleaned, and the yard mowed. Luckily, I had just retired from teaching when I received my diagnosis at the age of 61. The day I received the news, I kept thinking, so this is why I was supposed to retire. Teaching can be exhausting.

What I wish my friends knew about my life with MDS

1. Give sincere compliments when you see me, then stop. I never get tired of hearing, "You look great, Connie!" Please don't add, "You look better than you did; you aren't as pale." I hate that!

2. Don't assume because I look well that I feel well. I had a lady scold me at a luncheon because I wasn't visiting with people. Really? It was an effort just to be there.

3. If I tell you I don't feel up to doing something, believe me. Don't scoff when I say I need to rest. I am trying to stay well.

4. Ask what I need. Here's a good example. My mother was turning 88 years old when I made my first trip to MD Anderson. My friend and her husband took Mother out to dinner so she wouldn't be alone on her birthday. Great friends! It was the best thing they could have done for me.

5. Please include me in your plans. I want to come to your party. I might not stay the whole time, but I will try to be there. Don't assume I can't make it.

6. Keep in touch. A card in the mail is lovely, but a text message will cheer me up too.

7. There are more than 200 kinds of cancer! My cancer will look very different from your neighbor's, so we can't compare. There is no one size fits all treatment or a quick cure.

8. Don't give advice unless I ask for it. I know you mean well, but your advice might sound judgmental. Your sister-in-law cured herself by eating healthy? So you think I don't eat enough broccoli or I drink too many Dr. Peppers?

Every cancer journey is different

Everyone has a different journey with cancer. We have different reactions to our challenges. We need people in our lives who bring joy. I am blessed with many friends who do just that! I hope you are, too!

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