Yesterday, 9/11/12, was a day of remembrance for our nation. Eleven years ago our country experienced our most egregious attack and thousands of people mourned the loss of loved ones, stolen from their lives forever. Our losses and their effects have forever changed our lives.
September is annually a time of grief for me for another reason. It was 19 years ago this month that my mother was taken from me, my family, my children and our lives, forever. The cost of this loss of her precious life is incalculable, and try though I may, I will never get beyond the heartache of life lived without her.
Monday night, I attended a class of a group of women who have met together monthly for a year, learning and preparing to help navigate women through the maze of information and procedures involved with breast health and breast cancer treatment. The program is called the Community Breast Health Navigator and Cancer Support Program.
We were sharing stories of women we’ve spoken with, advocated, navigated, and encouraged. Sadly, nine times out of 10 it seems, regardless of the information given them, these women opt for a mastectomy even though in most cases the much less invasive lumpectomy would take care of things. We were discussing two causes for their poor decisions: Fear and Ignorance. Ignorance not only on their part, but quite often on the part of the doctors these women choose.
These are topics for future discussion, but what struck me last night was the heart ache that we all carry, but seldom reveal.
I was chatting with a friend I was sitting next to, I’ll call her Sue, and casually asked her about her mother. Sue shared how her mother had fought and won a battle with esophageal cancer. Stupefyingly, in the myriad of doctors appointments this woman had, no doctor ever checked to see if she’d had a mammogram. So at the age of 69, sixty-nine, she got her first mammogram. And wouldn’t you know it, there was a lump which later she learned was breast cancer. In less than a year, Sue’s mother had died. This is a tragedy of negligence in medical care – slipping between the cracks. A hero who fights and wins an impossible nearly incurable disease, falls prey to a very curable one afterwards. It was September when she died.
I asked my friend if she feels the grief every September. She said she didn’t think so, but that every time she heard the National Anthem sung, she’d lose it. Her mother had a beautiful singing voice, and was always the one asked to sing the anthem at various events. As my friend told me this, her eyes welled up with tears and she said maybe it effects her more than she realized. September is a difficult month for her, and hearing a song sung that used to bring her delight, now brings only sorrow and the reminder of her loss. Untimely, wrong, death by oversight.
Another friend was standing across the table from us. She said September is a very difficult month for her, and it showed in her face. She told us that her mother had died of breast cancer at the age of 39. Unbelievable. That’d mean my friend, let’s call her Jill, was probably in middle school. There were 4 sisters, all left without a mother. Sadly, that’s not the whole story. These girls grew up motherless, yes, then one died of cancer, young. This prompted Jill to find an excellent doctor who encouraged her to get genetic testing. All the sisters were tested. Jill was the only one who tested negative for the gene. Unfortunately, Jill’s sister didn’t have as good a doctor. He wasn’t as aggressive or quick to respond. Her sister listened to his advice and died of breast cancer within the year.
Jill told us how she’d teach Monday through Friday then catch a plane to spend each weekend in September caring for her dying sister; her eyes welled with tears, but she held them in check. This is the second September since the death of that sister and she grieves her colossal loss. She’s angry, and rightly so. She’s angry at the disease, and she’s angry at the lackadaisical ineptitude of some doctors, particularly the one treating her sister. With hardened face and red-rimmed eyes she swore under her breath as she walked away from us. “Damn waste.”
My mother died at the age of sixty. She’d gone to the doctor several times over the course of a year complaining of a ‘fullness’ in her abdomen. Her doctor told her to lose some weight. He told her she was imagining it. He finally relented and ordered a test – by that time the tumor on her ovary was the size of a grapefruit. During surgery, they accidentally broke it open, spilling the toxic waste throughout her entire abdomen. They ‘did their best to get it out’ and sewed her up. Rounds of chemo and hours of pleading with God for her life, she made it through – for almost five years. Another situation with that doctor finally motivated my mother to find another doctor who mis-interpreted her scan results. She picked them up and took them to a third doctor who gave her the news she’d suspected. Yes the cancer was back, and it was bad. Too little, too late and a husband and five children and 8 grandchildren were left without the warmth and love of the only wife, mother and that special one-of-a-kind grandmother they’d ever have.
My son had just turned 5 and my daughter 1 when we attended my mother’s funeral.
I think about the twinkle in her eye they’ll never see again and the warmth of her soft skin that they’ll never feel and I ache.
If all the stories of bad medical care were recounted, we’d have a murderous mob rioting at hospitals around the country. But most of us suffer our sorrows silently, doing nothing to promote change.
Don’t get me wrong. I’m extremely thankful for medical professionals. I’m indebted to a great many myself. If only every doctor was like the excellent ones I’ve found throughout my own cancer journey. Kind, compassionate, extremely intelligent, full of integrity. It isn’t these doctors I have a problem with. It’s the ones who are proud, ‘comfortable’ underachievers, willing to continue practicing using an outdated formulaic approach. The status quo is their friend.
I have met three doctors in my 50 years that I would nominate as “Best” doctors. Dr. Edibaldo Silva, Dr. Nagi Ayoub, and Dr. Jimmy Khandalavala. They don’t have an attitude of arrogance or complacency. They are learners. (To be a learner, one must be humble, because wanting to learn automatically expresses the acknowledgment that they know they don’t know everything there is to know. I’ve met some who actually believe they do know it all and I should feel lucky to be in their presence!) Best doctors are always reading, studying, keeping current on the latest studies and procedures, pioneering new methods and treatments. That’s the reason they get amazing results. These doctors are continually striving to improve, to hone their skills, perfect their practice and challenge the status quo. If only all doctors could be so excellent.
That’s why the medical profession is called a practice. It’s a place where they are learning and growing and practice is supposed to lead us toward perfection. Sadly, many doctors, once they get their credentials rest on their laurels. The women who go to them for treatment don’t receive the best care and consequently don’t experience the best outcomes either.
That’s why my friend ‘Jill’ is angry. That’s why Sue is sorrowful. That’s why we are a part of this fledgling group trying to advocate for women and bring about positive change.
We want to educate women before they find a lump. Before they’ve made up their minds (because of fear) to ‘just get them cut off and be done with it’. Our country has a campaign encouraging women to regularly examine their breasts and get a mammogram, but what is a woman to do once she finds a lump? Subject herself to an unknowledgeable or unscrupulous surgeon who will be happy to remove those problem breasts?
There are new procedures. New options! Mastectomies aren’t even necessary most of the time any more!!
I have said it before, and I will say it until I have no more breath. THE RIGHT INFORMATION + THE RIGHT DOCTORS = THE BEST OUTCOME!
Please, tell the women you love, think before you cut. Become informed, ask questions, challenge your doctor, and get a second opinion, or a third if necessary! It’s their life at stake. And it’s your future, spent enjoying the women in your life, or grieving their loss.
And stay tuned in here as we will bring articles and information that will empower you and those you know to make the best decisions and receive the best care possible.