Myeloma Dispatches: Mirror, Mirror On The Wall
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 (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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
What an inspiring story. As I have begun this battle against multiple myeloma in caring for my husband, I have been labeled by one friend as "the patient without the scar." Yet I feel that to onlookers, my husband who was recently diagnosed with multiple myeloma could also be labeled as such. Although, I am new to this type of caregiving, I liken it to the same amount of energy and expertise I once needed to rear four children and now occasionally care for four grandchildren. I loved your story! What a great reminder for everyone to age gracefully and defy the enemy in so doing. After all, you have earned every scar in the battle of multiple myeloma. Wear each scar proudly, both seen and unseen. It takes a lot of courage to fight the never ending battle.
Beautiful tribute to your mom – a wise lady and a real trooper! ❤
Thank you for this beautiful and heartfelt column. Spoken like a true warrioress! God bless you.
Maureen, your story was so heart-warming. I know the battle with myeloma is a hard one, yet alone having to deal with other medical issues that arise, such as your facial surgery. If I remember, you have the del 17p that makes your myeloma high risk. I also have del 17p and I am wishing that one of the newer drug therapies will be effective against the myeloma to slow the progression. Thank you for your wonderful story about your mother. Just a personal note to you – I adore your blue eyeglasses and bright blue top in your photo. (Your mother would be smiling, as you wear the "Bright blue".)
Yes, an inspiring story, indeed. And, it so reminded me of my mother (who passed away at 97). As she aged, she didn't like having her picture taken any more or looking in the mirror. It was very sad to see her lose her self-confidence - you are to be admired for your can-do attitude! As I approach 70, I will look to you as an inspiration to try to incorporate your positivity (is that even a word?) into my daily life.
P.S. I grew up in Colorado and spent many, many hours in the mountains near where you live. I still miss them after having left 31 years ago. My husband was diagnosed with multiple myeloma in 2011. We enjoy very much reading your columns.
What a lovely story!
Maureen - what an inspiring story. I would have loved your mother! My mother is nearly 87 and sounds a lot like your mother. She still shops for new clothes, she still goes to the gym and still tries to look her best all the time. I need to learn a lesson from both your mother and mine. So glad you are healing from your surgery, and I hope you continue to benefit from the daratumumab. I look forward to reading future columns on your condition, treatments, and experiences.
Beautiful story Maureen! So much like me and my mother. She never went out without being "made up", cute outfit and makeup, just like your Mom. Must be that era! Sadly, awful Alzheimer's stole her life away, and she passed in February 2010, just a a month and a half after my multiple myeloma diagnosis in December 2009. I too, refuse to let multiple myeloma steal what's left of my "appearance". Like you, multiple myeloma has changed my body in ways I dislike (thanks to 40 mg dex steroids), but I muzzle my mouth most of the time and have only gained 10 pounds since diagnosis. I don't like what has happened to me, but on the other hand, who knows how much time I have left, so when on roids, there are those days I allow myself to "eat the entire menu" lol.
But because I take pride in my appearance, and never go out without makeup, etc, like your story of you and your Mom, multiple myeloma has become an "invisible" illness to those external to me. How many times do we hear, "But you look too good to have cancer", blah blah.
Your Darzalex story is crazy! So glad you "survived" that, along with your incision finally healing. What an experience, wow! Scares me to try Darzalex, as I hear many have infusion reactions! I think we are both IgA?
Thank you so much for sharing such a wonderful Mom story, and your crazy one. Hope you continue to heal in all ways!
Thanks for the column about your stylish mother and how she always put her best foot forward, even when she went out to get groceries! Also, I am glad that the surgery on your cheek healed up well, and that the children that you volunteer for see you for the kind person that you are! You have a busy life with your exercising and your volunteering, let alone the medical treatments you have. Hope you have a good year, 2017!
Hello Hosanna, Thanks for the encouraging words. I can not express enough the power of my husband, my caregiver in my life. Yet I also know how stressful it is for him being in that role. Do not underestimate what you are the doing and the energy this job requires.
Dear Lois, Thank you for the positive words. These cheers do keep me writing.
Dear Cheryl, I do believe that Darzalex is the right drug to slow down my high-risk multiple myeloma. Thanks for noting my bright colors. I agree that my mother would approve.
Dear Joy, Thank you for the compliment. Writing for the Myeloma Beacon keeps me fighting.
Dear Jan, I am saddened to read how aging whittled away at your mother's self-confidence. I remember my Mom beginning to experience this particular loss at 83. I hope your husband is doing well, since he was diagnosed one year after me.
Dear Victoria, Thank you for your positive words.
Dear Patty B, What a lovely tribute to your mother. Yes, we need to keep learning from our elders.
Dear Julie, Thank you for sharing some of your multiple myeloma story with me. What a cruel sequence of losses for you, with the death of your mother and the new diagnosis of multiple myeloma. You brought up the strange challenge of also "looking too good to have cancer." The disease and the treatment may be invisible to the casual acquaintance. Close friends do know the wounds.
Dear Nancy, I read your column faithfully and eagerly each month. I hope your current treatment is progressing smoothly and it is working. Happy New Year to you and your family.
Thank you, readers, for all your comments, and here's to a new year with new celebrations for all of us.
Hi Maureen, what a great story! I think it's cool how you are able to find lessons both in what your mother did and in what the children you interacted with did.
Thanks a lot for sharing.
Mike
Aloha Maureen,
I love you describing your mother as defiant. I like that word as it pertains to how we deal with our declining bodies. I know its different for men, but I once heard and have always kept in mind that our wrinkles, warts, and scars are all earned and represent wisdom that we have gained.
From your writings, I see you as defiant as your Mom. Wear your markings with pride. You earned them!
Much Aloha,
Tom
Maureen, You're so beautiful on the inside, I never think about how you look on the outside. But I respect how you feel about yourself, and I want to think like the library kids--what fun things are we doing today and when can we start? It's great to hear how much pride your mom had in her appearance, too. Thanks for an insightful article, it helps me to know the right things to say and do. And you ARE defiant, and strong, and brave, and inspiring! I hope you're planning some triathlons this summer, so I can try to keep up in the swim!