Patient Blogs | Multiple Myeloma
After 24 Years With Multiple Myeloma, I Have a Lot to Be Thankful For
photo of man carving turkey during holiday meal

I want to be thankful. I am thankful. Thankfulness restores the soul. It helps take us out of our own selfishness. It gives us a place to count all of those blessings that we have been ignoring. Holidays can take us out of that selfishness box and remind us of what we have truly been given and how thankful we should be.

Holidays can be hard as a multiple myeloma patient. We often don’t look sick but feel horrible, or we feel fine and look sick. So, it’s just best to ask how we’re feeling and not make any assumptions about our condition.

One thing that’s hard for me at holidays is that I can’t be as helpful as I was before. I remember when we used to host events at our house. I could help cook and clean and play with the little kids. Now it is too hard to stand that much or lift babies. So now I sit on the sidelines and watch a game on TV or watch everyone else do the work. I am thankful because I don’t feel like anyone holds it against me or is grumbling behind my back. After so many years, friends and family understand that I have only so much energy to spare. Sitting and visiting can be exhausting.

I heard a story once that a woman, sitting with her friend, piled all of her spoons in the middle of her table. She told her friend that these were all the spoons she had to spare for the day. These spoons represented energy and the ability to accomplish things throughout the day. She held up three spoons and said this is how much making dinner costs today. But some days it takes 10 spoons. Putting on her socks costs one spoon and some days she spends all her spoons just getting ready for the day. This is my truth any day of the year, even on holidays. There are some predictors as to how much spoons might be worth depending on medication routines or how many spoons were spent the day before, but most of the time we can be at one extreme or the other without any explanation at all.

Another difficult thing is that sometimes it is important for us to stay away. Travel can be difficult. The wear and tear on our bodies is tremendous. We worry about blood clots and dizziness and germs. I so want to give that big ol’ sloppy kiss to my adorable nephew who has had a bad cough for two days, but that could mean the hospital for me. Spending time with family and friends is such a joy, but it may be full of dangers. I read a lot of online support group forums for myeloma patients. So many of them have become estranged from their families because they have been told that they are “faking it” or “if you won’t help, don’t come.”

I am thankful because, the day after Thanksgiving this year, I will have been fighting multiple myeloma for 24 years. Over time my friends and family have come to understand, with disappointment, that sometimes we just can’t come to things. But when we do, they accept the little help I can give, if any. They know I do better if I take a nap before the festivities and they are OK with that. I still struggle to take my own advice though, I end up exhausted because I’ve pushed it a little too far, even if it was really fun.

Holiday time can be filled with difficult memories for us with cancer. I was diagnosed the day before Thanksgiving and lost my hair the day before Christmas in 1997. 1997! I am so thankful for each and every day of those 24 years. I fought through them, I enjoyed them, I lived them. I think about special holiday times like when church friends brought gifts for each day of the 12 days of Christmas, or when our oncology center brought us a full Thanksgiving meal. Holidays can be hard for everyone; there is just that extra layer of hard for those who have cancer.

I need to remind myself to get out of my selfish little box and remember what I have been given. I need to be thankful. I AM thankful. I am thankful for my family and my friends. I am thankful that I’ve been able to meet 3 of my grandchildren so far. I am thankful for my doctors and my nurses that treat me like family. I am thankful for the best caretaker in the world and how he provides for me. I am thankful that I have a house, food, clothing, and access to excellent medical care. I’m thankful for mountains, and sunshine, and beautiful fall leaves. I’m thankful for each opportunity to talk to someone else who is going through this alongside me. I am thankful for holidays. I am thankful.

 

 

Photo Credit: Maren Caruso / Stone via Getty Images

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Beth Ayen

Beth Ayen

Diagnosed since 1998

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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