The portrait of the young girl hangs on our living room wall for as long as I can remember. In her old-fashioned dress, she smiles demurely.
I assume she's another knock-off print from the Green Stamp Store like Pinkie and Blue Boy. Mom has us kids licking stamps at the kitchen table like a small assembly line, and that's how she triumphantly acquires our living room decor. A self-absorbed child, I am never once curious about the girl on the wall - not until after I've left for college. One weekend, home from school, I find myself curiously studying the young woman from another time. At once I feel a spark of recognition.
"Who's this girl, Mom?" I ask.
She looks up, surprised at my sudden interest. We've lugged basket after basket of laundry through the living room when we abruptly collapse on the sofa.
"My grandmother," she sighs, sinking into cushions.
Stunned, I notice for the first time the girl's cheekbones - so like Mom's. Not once have I ever heard my mother speak of her grandmother.
Mom shifts the basket beside her. "She died before I was born - when my dad was young."
The girl, I learn, is Luella. In the picture, she's just graduated from high school. Later she will marry and give birth to two boys - the oldest is Allen, my grandfather. Luella is 39 when she learns she's dying of breast cancer.
"Allen," she says steadily to my twelve-year-old grandfather. "I need you to watch out for your baby brother. And your dad. He'll have a hard time."
Allen nods solemnly. Then he does something that later will cause him great shame. He lays his head on his mother's lap and cries like a baby. But for the rest of his life he will keep his promise.
The story I hear that day for the first time is tragic for another reason. My own young mother, who is beautiful and funny and escapes to her beloved piano on days my dad and all of us overwhelm her for attention, has herself been diagnosed with breast cancer. Wordless, she and I stare at each other over laundry baskets.
"It won't happen to you, Mom," I finally say.
But it does. Just 18 months later. At one o'clock in the morning in cold April darkness, Mom leaves us forever. I am the oldest of ten, and my youngest brother Jeff is seven-years-old. Our giant of a father puts aside his own grief to make us feel safe, and my siblings and I depend on him and each other as we never have before.
After Mom's death, I study the picture of Luella intently searching her face. For what, I don't know. But I desperately wonder if my sisters and I, like Mom, will share Luella's fate.
Not long after Mom dies, my 12-year-old sister Terri comes to me, her eyes wide with fear.
"I have breast cancer," she says.
"Terri," I say, "you don't have cancer."
Her eyes fill. "I do. I have a lump."
I examine the lump which turns out to be a bone.
"Everybody has it," I assure her. Relief fills her small face.
So closely connected are we to Mom that my sisters Deb, Mary, Terri, Carry and I feel certain we will all die as young women. We schedule our mammograms and then plan our funerals as we wait in agony for the results.
"My brother Tom should deliver my eulogy," I blurt out of the blue to my husband one day. We've been strolling around the lake together chatting about our son's elementary Christmas program when I make this sudden declaration.
My husband John patiently sighs. "Don't tell me. It must be mammogram time."
This is the way it is. I live one year at a time - from mammogram to mammogram.
My sisters and I make deals. If one of us is lying comatose in the hospital, it will be the responsibility of the others to sneak into the room to shave any unwanted facial hair. We prop each other up for every mammogram, biopsy and suspicious ultrasound. Then one day, Terri calls me from the Walmart parking lot in Lincoln.
"The doctor just called!" she sobs. "I have it! I've got breast cancer!"
Now 44 and the wife and mother of six kids, Terri is diagnosed at the same age Mom was. I cannot take away her fear the way I could when she was 12. Nevertheless, my sisters and I rush to Lincoln to accompany Terri and her good husband Paul to every appointment. Doctor Janet Grange, a much respected breast cancer surgeon in Omaha, tells Terri the cancer is caught early.
"You're a perfect candidate for a lumpectomy," she assures Terri.
But quaking with fear, Terri decides to have a double mastectomy and put her fears to rest forever. I think I have never seen my little sister so brave.
Only two weeks after Terri's surgery, my sweet sister Deb's mammogram reveals atypical hyperplasia, a pre-cancer of the breast. Once again, my sisters and I sit shoulder to shoulder in the small examination room as Dr. Grange tells us something is off in our genetic makeup.
In a heartbeat we know what we will do. Deb, Mary and I will undergo preventive double mastectomies. We're tired of living in fear, and Terri has made us brave. That year of 2010, Deb undergoes a mastectomy in November, I go next in December, and Mary follows in January. Carry, our youngest sister recently divorced, refuses to have the surgery.
"I'll be careful!" she promises.
We respect her choice. Barely in her 40's, Carry is young and attempting to date again. I understand her reluctance. But when she flips completely and opts for breast enhancement surgery rather than a mastectomy, I hit the roof.
"What is she thinking!" Too angry to speak to Carry herself, I rail at my sisters instead. "You wait! She'll get cancer underneath all that boob job and expect us to drop everything to rush to Omaha and take care of her!" I shake with fury.
"And we will," Deb says calmly. Because Deb's the nice one.
Our words are prophetic. When Carry is diagnosed with breast cancer, we immediately drive to Omaha. I am with her when our heroic Dr. Grange must gently inform Carry that her cancer is aggressive and must be treated with a double mastectomy and chemo.
"But it's early!" Dr. Grange comforts my sobbing baby sister. "Your breast implant pushed the tumor up to the surface and made it possible for us to catch it right away. It probably saved your life!"
So what do I know? God works in mysterious ways.
Carry is the last of us to lose her breasts. After months of chemo, she is healthy and happy and a fearless advocate for breast cancer awareness.
It's been eight years since Terri was diagnosed. We are all free of breast cancer, and the relief should be nothing short of liberating.
Except that last July, my darling little sister Deb is diagnosed with an aggressive form of endometrial cancer. Even though her cancer is caught early, Deb fears for her life and the lives of her three daughters.
"You will promise me now," she sits down with her daughters Nikki, Brandi and Sydney, "that you will find out what's going on in this family and do what you have to do to protect yourselves."
That's the rub. The next generation of daughters is coming of age, and the nagging question persists. What about our genetic makeup is determined to take down the females of our family?
Brandi, Deb's daughter and a new mother, decides to take the bull by the horns. It's time, she tells us, to be genetically tested. She and all my nieces deserve to know what they're dealing with.
That's how all of us - a large family of females - happen to be in my living room on a warm afternoon last month with another Brandi, Brandi Kay Preston. A 27-year-old dynamo who at 22 undergoes a double mastectomy herself, Brandi Kay is a genetic advocate determined to help other women at high risk, a promise she makes to her own young mother before she succumbs to breast cancer. Founder of the Hereditary Cancer Foundation based in Omaha, she travels the country urging women to advocate for themselves and to explore their genetic makeups. She very much wants to study our family. Even if our own insurance companies will not cover the cost of genetic testing, Brandi Kay promises her organization will foot the bill.
My sisters and I are astounded at the courage of our daughters. Kelsey, my brother Tom's youngest daughter, is too young to be tested. Karley, Tom's oldest, and Nikki, Deb's oldest, are not yet ready to know. How can I blame them? For so many young women, the truth is a terrible burden. Yet, my other nieces are desperate for knowledge. They plan to be wives and mothers soon. For them the uncertainty is worse than the burden of knowing.
"Growing up," my niece Brandi confides to us, "I remember how Mom would mark all your mammogram appointments on the calendar. Then she'd pray like hell and shake in fear every time the phone rang. I knew that would be my future, too," Brandi's luminous blue eyes fill, "and I've decided there's nothing else to do but be as proactive as I can."
All by herself, Brandi has organized this gathering and persuaded almost every one of her 18 girl cousins to be tested. Now they huddle together in my living room with three women who will deliver to them the fate of our genetic makeup - genetic advocate Brandi Kay Preston, physician assistant Skyler Jesz, and the pleasant nurse who will draw our blood.
Each of us and my beautiful nieces submit to the blood test. Then we wait.
In a matter of weeks, we receive the results.
While none of us tests positive for the BRCA1 or 2 mutation, the results reveal VUS - (Variance of Uncertain Significance). In other words, scientists haven't identified every mutation for breast cancer. Three of my nieces, Deb, Carry and I are all carriers. With the single exception of my niece Emily, however, every other niece is at a moderate or high risk for breast cancer, even if they don't test positive for VUS.
The only thing we understand, geneticist Brandi Kay explains, is that almost all of us, even those who don't carry the VUS abnormality, still have a strong familial risk.
So we continue to wait for the pieces of the puzzle to fall into place. Hopefully our extensive gene pool will help to provide researchers with a few more clues. In the meantime, my courageous nieces are talking. And planning. Preventive surgery may well be in their futures, and they're mentally preparing themselves for the day they will protect themselves against breast and reproductive cancer.
But who knows? Ultimately, perhaps a cure or vaccine is just on the horizon. That's our fervent prayer. However it plays out, these gorgeous girls will figure it out, and they will never let cancer take them from their families.
Mom would be proud of them. I feel her close. She's watching out for her granddaughters. So is their great-great grandmother Luella, the girl on the wall, who had no inkling of the powerful force she would become throughout the next one hundred years in the lives of 24 women - her many daughters. Thanks to Mom and Luella, we will all live long lives.
How I wish now that I could know the girl on the wall. That I could sit close and ask about her little sons, her terrible fear of leaving them, and her eventual and helpless surrender to breast cancer.
How I wish I could hold her hand - and tell her thank you.
 |
| Steph, Katie and Jess, my sister Mary's daughters |
"Who's this girl, Mom?" I ask.
She looks up, surprised at my sudden interest. We've lugged basket after basket of laundry through the living room when we abruptly collapse on the sofa.
"My grandmother," she sighs, sinking into cushions.
Stunned, I notice for the first time the girl's cheekbones - so like Mom's. Not once have I ever heard my mother speak of her grandmother.
Mom shifts the basket beside her. "She died before I was born - when my dad was young."
 |
| Morgan, my sister Carry's daughter |
"Allen," she says steadily to my twelve-year-old grandfather. "I need you to watch out for your baby brother. And your dad. He'll have a hard time."
Allen nods solemnly. Then he does something that later will cause him great shame. He lays his head on his mother's lap and cries like a baby. But for the rest of his life he will keep his promise.
The story I hear that day for the first time is tragic for another reason. My own young mother, who is beautiful and funny and escapes to her beloved piano on days my dad and all of us overwhelm her for attention, has herself been diagnosed with breast cancer. Wordless, she and I stare at each other over laundry baskets.
 |
| Samantha and Emily, my brother Rick's daughters |
But it does. Just 18 months later. At one o'clock in the morning in cold April darkness, Mom leaves us forever. I am the oldest of ten, and my youngest brother Jeff is seven-years-old. Our giant of a father puts aside his own grief to make us feel safe, and my siblings and I depend on him and each other as we never have before.
After Mom's death, I study the picture of Luella intently searching her face. For what, I don't know. But I desperately wonder if my sisters and I, like Mom, will share Luella's fate.
Not long after Mom dies, my 12-year-old sister Terri comes to me, her eyes wide with fear.
"I have breast cancer," she says.
"Terri," I say, "you don't have cancer."
Her eyes fill. "I do. I have a lump."
 |
| Sydney, Brandi and Nikki, my sister Deb's daughters |
"Everybody has it," I assure her. Relief fills her small face.
So closely connected are we to Mom that my sisters Deb, Mary, Terri, Carry and I feel certain we will all die as young women. We schedule our mammograms and then plan our funerals as we wait in agony for the results.
"My brother Tom should deliver my eulogy," I blurt out of the blue to my husband one day. We've been strolling around the lake together chatting about our son's elementary Christmas program when I make this sudden declaration.
My husband John patiently sighs. "Don't tell me. It must be mammogram time."
This is the way it is. I live one year at a time - from mammogram to mammogram.
 |
| Kailey, my brother Joe's daughter |
"The doctor just called!" she sobs. "I have it! I've got breast cancer!"
Now 44 and the wife and mother of six kids, Terri is diagnosed at the same age Mom was. I cannot take away her fear the way I could when she was 12. Nevertheless, my sisters and I rush to Lincoln to accompany Terri and her good husband Paul to every appointment. Doctor Janet Grange, a much respected breast cancer surgeon in Omaha, tells Terri the cancer is caught early.
"You're a perfect candidate for a lumpectomy," she assures Terri.
But quaking with fear, Terri decides to have a double mastectomy and put her fears to rest forever. I think I have never seen my little sister so brave.
 |
| McKenzie, Whitney and Jamie, my brother Mick's daughters |
In a heartbeat we know what we will do. Deb, Mary and I will undergo preventive double mastectomies. We're tired of living in fear, and Terri has made us brave. That year of 2010, Deb undergoes a mastectomy in November, I go next in December, and Mary follows in January. Carry, our youngest sister recently divorced, refuses to have the surgery.
"I'll be careful!" she promises.
We respect her choice. Barely in her 40's, Carry is young and attempting to date again. I understand her reluctance. But when she flips completely and opts for breast enhancement surgery rather than a mastectomy, I hit the roof.
"What is she thinking!" Too angry to speak to Carry herself, I rail at my sisters instead. "You wait! She'll get cancer underneath all that boob job and expect us to drop everything to rush to Omaha and take care of her!" I shake with fury.
"And we will," Deb says calmly. Because Deb's the nice one.
Our words are prophetic. When Carry is diagnosed with breast cancer, we immediately drive to Omaha. I am with her when our heroic Dr. Grange must gently inform Carry that her cancer is aggressive and must be treated with a double mastectomy and chemo.
 |
| Karley and Kelsey, my brother Tom's daughters |
So what do I know? God works in mysterious ways.
Carry is the last of us to lose her breasts. After months of chemo, she is healthy and happy and a fearless advocate for breast cancer awareness.
It's been eight years since Terri was diagnosed. We are all free of breast cancer, and the relief should be nothing short of liberating.
Except that last July, my darling little sister Deb is diagnosed with an aggressive form of endometrial cancer. Even though her cancer is caught early, Deb fears for her life and the lives of her three daughters.
"You will promise me now," she sits down with her daughters Nikki, Brandi and Sydney, "that you will find out what's going on in this family and do what you have to do to protect yourselves."
That's the rub. The next generation of daughters is coming of age, and the nagging question persists. What about our genetic makeup is determined to take down the females of our family?
Brandi, Deb's daughter and a new mother, decides to take the bull by the horns. It's time, she tells us, to be genetically tested. She and all my nieces deserve to know what they're dealing with.
 |
| Clare, Sarah and Patti, my sister Terri's daughters |
 |
| Cathy |
"Growing up," my niece Brandi confides to us, "I remember how Mom would mark all your mammogram appointments on the calendar. Then she'd pray like hell and shake in fear every time the phone rang. I knew that would be my future, too," Brandi's luminous blue eyes fill, "and I've decided there's nothing else to do but be as proactive as I can."
 |
| Deb, Mary and Terri |
All by herself, Brandi has organized this gathering and persuaded almost every one of her 18 girl cousins to be tested. Now they huddle together in my living room with three women who will deliver to them the fate of our genetic makeup - genetic advocate Brandi Kay Preston, physician assistant Skyler Jesz, and the pleasant nurse who will draw our blood.
Each of us and my beautiful nieces submit to the blood test. Then we wait.
In a matter of weeks, we receive the results.
 |
| Carry |
The only thing we understand, geneticist Brandi Kay explains, is that almost all of us, even those who don't carry the VUS abnormality, still have a strong familial risk.
So we continue to wait for the pieces of the puzzle to fall into place. Hopefully our extensive gene pool will help to provide researchers with a few more clues. In the meantime, my courageous nieces are talking. And planning. Preventive surgery may well be in their futures, and they're mentally preparing themselves for the day they will protect themselves against breast and reproductive cancer.
But who knows? Ultimately, perhaps a cure or vaccine is just on the horizon. That's our fervent prayer. However it plays out, these gorgeous girls will figure it out, and they will never let cancer take them from their families.
 |
| Our mother, Patti Brown. 1930-1979. |
Mom would be proud of them. I feel her close. She's watching out for her granddaughters. So is their great-great grandmother Luella, the girl on the wall, who had no inkling of the powerful force she would become throughout the next one hundred years in the lives of 24 women - her many daughters. Thanks to Mom and Luella, we will all live long lives.
How I wish now that I could know the girl on the wall. That I could sit close and ask about her little sons, her terrible fear of leaving them, and her eventual and helpless surrender to breast cancer.
How I wish I could hold her hand - and tell her thank you.
