Posts Tagged ‘breast cancer’

pink torrent

September 22, 2012

Today I’m going to volunteer my time in a local mall sitting at a table for two hours. (Westroads Mall – my shift is from 2-4 if anyone wants to come by!) The Komen people are hosting some kind of event there and have allowed our group, the Community Breast Health Navigator and Cancer Support Program to have a table to introduce ourselves and our services to people. The event will be held from 10am til 7pm I believe, but we’ve only got three of us to cover three two-hour shifts today. We’ll be there from 10-4.
I’m hoping that women and men will stop by and ask questions or share their stories. I’m hoping that I can be living proof that there is hope for people diagnosed with breast cancer. I’m hoping that our name will become well known so that when a woman finds a lump in her breast, she’ll call us for help before going to see a surgeon!

I’m hoping that this one small act on my part will become a droplet which helps form a flooding torrential movement that rescues women from unnecessary fear-based surgeries.

You see, most women when they find a lump, if they get the proper kind of needle biopsy, will find that they don’t have cancer, but a cyst of some sort. If they do find it is cancer, most surgeons won’t tell them that having chemotherapy first to shrink the tumor will allow for a relatively simple outpatient lumpectomy, saving the patient physical trauma, expensive hospital care and their breast.
Having chemo first will allow for two important things to occur. First, it will show the doctor and the patient if the chemo is effective. If the tumor shrinks, they’ll know that it’s working! Then, if the tumor shrinks, that means that the breast won’t be completely disfigured and she can save herself all the discomfort of a mastectomy and subsequent reconstructive surgeries, (not to mention time and money and her own body part!)

Yah, yah, I know, nobody wants chemotherapy. Believe me, I get it. I’ve had it twice! I’ve been bald twice and have lived through both times and now have long lovely hair. What I don’t have is my breasts. Hmmmmm, hair or breasts. Hair that grows back or breasts that don’t.

Let me tell you also, that despite what you may think, reconstructed breasts, no matter how close to the real thing they might get are still not the real thing. They have scars bisecting them. They don’t have the same feeling/sensation ability. They look pretty good under clothes, but that’s about as good as it gets. Don’t fool yourself into thinking that it’ll be the same. It isn’t.

Well, I got off track a bit. There I go again, getting passionate and running with it!

Hope to see you at the mall!



September Sorrow

September 11, 2012

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 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.

farmers market for a cure

July 15, 2010

It’s a hot night in Waleska, Georgia, as it is most places the country right now.

This evening my husband and I were heading back to our borrowed sabbatical home near a lake in the foothills of the Blue Ridge Mountains when we passed by a small farmers market being held behind an old Baptist Church with a ‘for sale’ sign at the corner of Hyw 5 and Hwy 108. Les asked if I’d like to go and I said, “Why not? What else do we have to do tonight?!” That’s one of the beauties of sabbatical, not having any thing you have to do or any place you have to be! He swung the car into the gas station caddy corner to the church to run in and get cash from the ATM.

We turned the car around and drove the 300 or so feet across to the church and parked our car. Man, it was hot!

There were maybe 10 booths arranged in a U-shape. First we came to a man selling his self-proclaimed famous BBQ sauce and home-made jams. He offered us a taste of the sauce as well as his Meyer-lemon marmalade with vanilla or blueberry jam with nutmeg and some other unusual ingredients. The next tent-booth housed a woman selling candles. We tried to pass by unnoticed but she hollered out, “Do you burn candles? Do they smell? I’ll tell you why you can’t smell them!” And she proceeded to tell me why. I smiled and said thanks and kept walking.  Burning anything was not a pleasant thought right then! If she’d been selling ice cubes she might have made a sale!

Next, there was a booth with stuffed animals made from socks – my favorite item so far. The creative little critters looked happy and friendly like characters in a Dr. Seuss book.

There were booths selling delicious looking watermelon, cucumbers, tomatoes, okra, potatoes and other vegetables. One man had rose bushes and another tent had a table loaded with jewelry. We just browsed and smiled and sweated and walked. Man it was hot! The thermostat said it was 93 but that wasn’t counting the heat radiating up from the cement. It had to be at least 100, maybe hotter.

We rounded the last turn in the U past another booth selling BBQ sauce (we might have shown some interest if we hadn’t just eaten dinner!) We smiled at the man as we passed him and approached the next tent. It had colorful cupcakes arranged on a white metal cupcake stand and a hot pink boa strung along the top of the awning. Two attractive women in their late 50’s sat within and one began to explain that the flyer I saw was for a catering business her daughter owned, but that she was here raising money for the Komen Foundation. Her daughter, Natalie, was going to be walking 60 miles over 3 days and was wanting to raise $5,ooo.oo. She was up to about $2,100.00. Her mother was telling us that she thought her daughter was being a bit extreme. She’d never had cancer and about that time her daughter walked up and introduced herself to me and further explained what she was trying to do.

Natalie has two sisters. She told us that statistically, one of the three of them is likely to get cancer at some time in their life. Her mom cut in trying to say that was highly unlikely and they talked back and forth, not arguing, but trying to convince each other of their opinion. Natalie said, “Mom, you aren’t always going to be here for us. I’ll need to look out for my sisters, and I need to start now.” Wow. That was really precious.

Les and I stood there in the sweltering, sweat inducing heat taking it all in. All of a sudden I heard myself say, “I’m a two-time breast cancer survivor. I have two sisters as well. I think it’s great that you’re doing this.” I told them the cupcakes looked gorgeous, which they did, but that we just wanted to contribute to her fund as Les handed her the money he’d taken from the ATM.

Tears welled up instantly, ready to overflow their eye-lid border. Emotion that I’d apparently lost touch with jetted to the surface pressing to be released.

Natalie and her mom and the other woman sitting there were shocked and surprised and I could tell they were touched by my brief story. Natalie said she wanted to give me a hug but she was so sweaty that she shouldn’t so she sent me one across the table flinging her arms out toward me.

I thanked her as I tried to keep the emotion-controlling dam in place – wishing it would hold back the rush of tears and wails that were pressing to be released. I could feel the wall bow and just hoped I wouldn’t ‘lose it.’ All that emotion would tsunami its way out and it could get messy.

Les asked if I’d like to get a picture of us and I said that no, it was ok. I’d just remember it. I wanted to make a quick exit.

We got to the car and my face was wet with tears. They were no longer spilling but were rushing and washing and I was still fighting back the sobs. What was going on? What button got pushed? What was that all about?!

I regained some composure and said that maybe I’d like a photo with Natalie after all.

We climbed back out of the car, onto the griddle-hot pavement and walked back to Natalie’s tent. They were happy to see us and said how they were all talking about me and were still crying, wiping their eyes and sniffing. Natalie’s mother said, pointing to the giant of a man in the BBQ tent, that even he was crying! He nodded at me in agreement. Well, that got me crying again!

Natalie came around the table to get her photo taken with me under the hot pink boa and we hugged, sharing our sweat with one another and more importantly our kindred hearts for women who face this dreaded disease. Les asked if he could pray for her and she said yes. We put our arms around each other and he prayed. We said our goodbyes again and walked back to the car. We could hear them saying what a good prayer that was and all I could do was cry.

Natalie and Kris

As we were driving away, other than my sniffing we were silent.  My precious treasure of a husband just drove and didn’t press me to explain or unpack my feelings. He gave me space to sort them out, which I am still trying to do.

I think the reasons for my rush of tears are many. Some of the emotions come from the bumping open of ‘boxed-up-to-be-forgotten’ memories – those experiences so painful and sorrows and griefs so numerous that resulted from both encounters with cancer. I’d just rather leave them alone and keep moving on. But in situations like this one, those boxes get their lids bumped off and I see once again what’s inside. It’s painful to remember.

Then there are emotions that come from a two-tierd humility. The humility of having gotten cancer twice and that of having survived. It’s hard to explain, but for me it was almost like a kind of shame I had to deal with. I got the dreaded disease. I was marked with the pink ‘C’. I was one of the unlucky ones. That’s a negative type of humility.

But then there is a humility born from the gratitude of making it through, twice, when so many don’t. Like me, they fight so hard, but for whatever reason, they don’t win in the end. It makes me sad. I know that I wasn’t the reason I survived. I’m keenly aware that the prayers and fasting of thousands of friends I know and those I haven’t met yet made a difference for me. I am indebted to them as well as to my doctors who fought hard with and for me, and to my husband and children who endured with me and cared for me and pampered me. I couldn’t have survived without them. I’m a debtor. That humbles me.

Finally, there is a wave of emotion which comes from meeting people like Natalie who whole-heartedly give themselves to working hard to make a difference for the sake of others. They bake cupcakes and decorate them beautifully and sit outside for hours in the sweltering heat and sweat and sacrifice to help other people, people like me. That kind of selflessness touches me deeply. It reminds me that beauty and goodness really do still exist in the world. It makes me feel loved and cared for even though we’d only just met. There is a sense of family and acceptance and belonging. That, too, is humbling.

I never would have guessed that we’d stop serendipitously at a farmers market on a hot evening in Waleska, Georgia to idle away some time together and I’d end up finding a new friend and maybe not the cure for cancer, but at least a salve to continue healing my heart and a source. A source of hope for countless women as we link arms in solidarity to raise money to find a cure and fight it and win.

(Oh, by the way, I thought I’d include a link to Natalie’s website. If you’d like to help Natalie reach her goal and also contribute to the Komen Foundation as they continue funding to find a cure, click on the Komen 3-day Race box at the top of her page and it will link you to a secure page with the Komen Foundation. Thanks from the bottom of my heart!)