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Myeloma Dispatches: Mirror, Mirror On The Wall

By: Maureen Nuckols; Published: January 6, 2017 @ 8:11 am | Comments Disabled

My mother, at age 83, dressed up to go to the grocery store. She chose her tops with an eye for a bright color, such as tangerine orange or scarlet red, to contrast with her black trousers. Her everyday jewelry was beautiful south­western tur­quoise and silver. She applied her makeup behind closed doors, to not give any secrets away.

In her 80’s, Mom was tiny, only 4 foot 10 inches (1.47 m), yet she walked tall with her head up high. When my friends commented on how cute she was, she re­plied with irritation, “Poodles are cute, not older women.”

Now, several years later, I am ashamed of how I teased her, saying things like “Mom, we are just going to the market.” She never argued, just smiled at me. I thought she was vain.

I remember her now as I struggle with the changes aging brings to my body. My hair is gray, my eyebrows are disappearing, and no matter how much I exercise, my middle is thicker.

Another insult to my body is osteoporosis. Its rapid advance was one of the clues for my myeloma diagnosis. Although I have lost height, frequent infusions of Zometa (zoledronic acid) have halted further bone loss.

My mother died suddenly 14 years ago at the age of 83. She lived independently and traveled to Canada, Hawaii, and Colorado every year to spend time with her daughters. She was terrified of becoming old and dependent. I believe her sudden death was how she preferred to leave this world.

I am trying to learn from her and how she fought aging and self-image.

Most of my life, I have taken little notice of my appearance. My haircuts are designed to be easy, and makeup for daily use is little or none. Already, I accept that as I get older, I am taking more care with my appearance. When I look in the mirror, sideways, I can see my Mom.

Last September, my face took a beating and with it my self-image.

I had a squamous cell carcinoma on my right cheek. A surgical procedure (Mohs surgery) was recommended to remove it. This was not my first facial lesion, and I’m more at risk because of the multiple myeloma and all the treatments I have received for it. The oncologist, the dermatologist surgeon, and I agreed that I needed the surgery. The lesion was growing larger.

As a precaution, I was given a platelet infusion before the procedure because I was low in platelets. Platelets are the part of the blood that is vital for clotting. For the first few days after the surgery, the incision was sta­bi­lized by a bulky dress­ing that covered the entire right side of my face.

Four days after the surgery, I received my first dose of Darzalex [1] (daratumumab). I experienced severe in­fusion reactions. Besides fever, chills, nausea, and vomiting, my recent facial wound began to bleed pro­fusely. In a daze, I remember many nurses trying all kinds of dress­ings with pressure to stop the bleeding. What finally stopped the bleeding were more platelets at the end of the Darzalex infusion.

As a result, I had a large hematoma that started under the eye and traveled down to my neck. The bruise was swollen, dark blue, and covered half of my face. For two weeks, the incision was covered with layers of dress­ings. I had to look in the mirror each time for my husband and me to dress the wound. I felt ugly.

The first time I went to the grocery store, I had five people ask me what happened. By the sixth person, I sent an SOS to my husband, who rescued me by finishing the shopping for me. This is what happens when you live in a small town.

For the next six weeks, I didn’t do much socially. I spent time with close friends but avoided large crowds. By Halloween, the bandages came off, and the bruise transformed into a purple stain that covered half of my face. The dermatologist promised me the stain would fade and disappear eventually.

During this challenging time, I continued to volunteer weekly at the local library. Three of us worked with ele­men­tary and middle school children in an after-school program that included crafts and snacks.

I was worried the first time I came with my big, bulky dress­ing. How would the children react? How would they treat me?

We gathered the children and I gave a brief explanation of what had happened to me. The only question I received was “Does it hurt?” After that, we started our project. Each week, a few children would encourage me by stating the bruise was getting smaller. What I loved was my face was no big deal to any of them. They wanted my attention, my humor, and my help on their craft. They didn’t care how I looked.

Now the stain is almost gone. I am the only one who notices it, but I may be the only one looking.

Is there a lesson here? What would my Mom say?

“Maureen, put a little makeup on. Choose a fun outfit with bright colors. For goodness sake, put your head up and smile.”

I used to think my Mom was vain. Now I know she was defiant. I would like to be like her in this fight against this cancer.

Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [2].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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[1] Darzalex: https://myelomabeacon.org/tag/darzalex/

[2] here: https://myelomabeacon.org/author/maureen-nuckols/

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