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Incurable. That’s what the man said.
I was in the bathroom mirror, putting on my new MAC lipstick. In the background, the soft, monotonous hum of CNN newschatter kept me company as I applied my war paint. A news anchor’s voice, soft and reassuring, announced that Geraldine Ferraro, former vice-presidential nominee, had Cancer. I paused a moment—-paused the way people do when they hear the C word. Then the voice said that the Cancer Ms. Ferraro was diagnosed with was a blood Cancer called Multiple Myeloma. This time my body shook with fear and recognition. The tube of “Lady Danger” I was holding, fell through my trembling fingertips and into the porcelain bowl below, making a waxy crimson mess.
I remember scurrying into the living room on legs which felt about as sturdy as two lo mein noodles, then standing in front of the television, transfixed. I watched as the anchorman’s lips moved up and down, and listened intently to the familiar litany of scientific medical mumbo jumbo. The voice said that Multiple Myeloma was extremely rare. I knew this. He said that it usually affects people 65 and over, and could be extremely painful. I knew this, too. Then in a dramatic finale, the voice said that the disease had NO….KNOWN….CURE! I did NOT know this. I did NOT know this. Why didn’t I know this?
I took a deep breath and crumpled into the old, worn cushions of the ancient sofa beneath me. Immediately, I had the answer to my own question. It was obvious. The only reason I hadn’t known that Myeloma was incurable was because I didn’t want to know. When my mother was first diagnosed, I was a scared college sophomore who didn’t ask questions. I knew better. The looks on her doctors’ faces told me stories I wasn’t ready to hear….EVER. And I wanted to believe, NO, I needed to believe in the fairytale. The one where my mother couldn’t possibly die when I still needed her. The one where she’d never up and disappear off the face of the planet before I’d graduated college, had children of my own or even finished figuring out who I was. So, when her oncologist mentioned that people with Myeloma could “live for years,” I ran with it like a track star rounding the final turn. I chose to believe that by “years” he meant 15, 20, maybe more.
My mother did “live for years” after her diagnosis. Three. After she died, I felt completely outraged, as if we had been scammed out of the time that was supposed to have been hers. What happened, I wondered, to those decades I thought the doctors had promised us? But today I know better. It took hearing that one little phrase, “No Known Cure,” on the television that day to force this ostrich to finally take her head out of the sand and start educating herself about the bogeyman that took my mother. After pouring over articles, websites and medical journals, I know now that the 3 years she lived after her initial diagnosis was actually pretty typical for a Multiple Myeloma patient at that time. I have also learned many other things about the little known disease. Like the fact that studies have shown a linkage to certain occupations, and the fact that the disease takes a staggeringly disproportionate toll on African-Americans, yet doctors still can’t figure out exactly why.
It’s not like I’m an expert on Multiple Myeloma or anything, but at least I have begun to open my eyes and confront the fears which had been paralyzing me for so long. For too long, I had allowed ignorance to reign, terrified of finding out there might have been something more I could have done to save her. Some drug I should have known about, some symptom I should have caught earlier. And along with my guilt, I’ve also learned to face those nagging little fears about my own mortality; fears which whispered to me that if I’d inherited my mother’s stubborn temperament and her strong West Indian cheekbones, maybe I had inherited her BAD BLOOD, too!
But we’ve all got monsters we’ve got to face at one time or another, be they a family history of Cancer, or long hidden away secrets of childhood abuse. The monsters don’t go away if you ignore them, they grow and fester and eat into your joy. Life is about staring down these bogeymen and slaying them one dragon at a time.
I’m not sharing this story so that everyone can run out and become some big expert on Myeloma. It’s still rare enough that most of you reading this will probably never come into personal contact with its’ devastating effects. But we’ve all got monsters we’ve got to face at one time or another, be they a family history of Cancer, or long hidden away secrets of childhood abuse. The monsters don’t go away if you ignore them, they grow and fester and eat into your joy. Life is about staring down these bogeymen and slaying them one dragon at a time.
I ask questions now, although I still don’t always like the answers. There are some things I’ve come to understand which, had I known them when she first became ill, may or may not have made some tiny difference in her suffering. I just have to live with that, and forgive myself for it. And, as it turns out, a few of the concerns I had about my own health were actually well-founded. There is a clear genetic component to this disease, and the fact that I am both an African-American and a person with a family history of Myeloma does put me in a greater risk category. But, gathering all this information has also freed me in a lot of ways, helped me to calm some of my more irrational fears. Now, I know that even with my added risk factors, Multiple Myeloma is still unusual enough that the chances of my ever having to come face to face with it again are pretty remote (so much for the days when a severe back pain, one of the first symptoms my mother exhibited, would have had me completely convinced that I should get ready to kiss my ass goodbye).
It’s good to know. That’s all. Knowing helps me to take better preventative care of my health and maybe, one day (pleeease God,) my children’s health, too. Knowing allows me to live without a thousand “what ifs” constantly running through my head. Now, when I think of my mother, when I touch the “G” pendent I made out of her key chain, or trace my fingers over the few, cherished images I run across in old shoe boxes, I’m not thinking about what I should have done. I’m not thinking about what may or may not happen to me one day. All I am thinking is what I should be thinking….I MISS MY MOMMY.
For Greta.
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A.C. – great tribute to your mother. I know the concerns of the monsters lurking. We all suffer with them. But I agree, when you face them, you live a little lighter. Thanks for sharing. And here’s to hoping that your life becomes continually lighter by encouraging us all to face our monsters.
this was extremely poignant for me. my grandmother died from multiple myeloma on 4/18/06. before she had it, i had never heard of this form of cancer. unfortunately, my immediate family has a history of cancer. both my grandmother and aunt had survived breast cancer. i had already made a mental list of the screenings i would need to get but the depression i slipped into while watching my grandmother die was paralyzing. watching one of the strongest, most vocal people i know deteriorate was one of the hardest things i ever had to do. but i know my grandmother would want me to be proactive, especially since i now know. essence does a good job of listing the various screening and tests women of every age range should get. i encourage everyone to take care of themselves and their loved ones. it starts with making that doctor’s appointment.
**even though i have disagreed with ms. ferraro lately, i am sorry to hear about her diagnosis and i wish her well. a.c., thank you for sharing.
Well written AC! I am always glad to see when cancer gets some attention, because it is too often forgotten in the media. It seems like cancer has a direct or at least indirect on everybody I know, but the semi-annual plane crash and the occasional abduction gets all of publicity. I can personally relate to your article. Thanks.
Thank you for sharing… and educating… Well appreciated…
one word….wow!. very honest and intriguing
Thank you for sharing. That must’ve taken so much for you to do. I appreciate it.
Awesome article. Thank you so much for sharing!! i knew nothing about this.
I watched both of my grandfathers die within three years of their diagnoses from Multiple Myeloma. I can relate because just like you… I didn’t want to know. I didn’t want to know the details or the pain they were in. My mother is currently battling kidney cancer.
Thank you. You’ve given me that extra push to ‘get my head out of the sand’ as well.
:)