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...breast cancer involuntarily reorganized my life
When Barbara Parker was pregnant with her first child in 1969, she looked up LLL and found an “interest group” of women looking for someone to be accredited so their group could become official. The woman who finally met the criteria led the group for a couple of years, until health problems forced her to retire. By then, Barbara was a Leader Applicant, but not yet ready for leadership. To provide support for local women in Raleigh, North Carolina, she and others began an independent group, Nursing Mothers of Raleigh (NMR). Meanwhile, says Barbara, she was a “true blue” LLL mother and continued her work toward leadership. In 1974, she was accredited, two other LLL Leaders moved to town, and LLL of Raleigh was reborn. Since then, the group has grown extensively and continues to coexist with NMR.
First, tell us a bit about your family.
I have been married for 38 years and George and I have three children:
Elizabeth (and John) Grovenstein, the parents of our first grandchild, Michael, who lives in Raleigh; Jonathan (not married) who also lives in Raleigh; and William (a senior in college) who is in Greenville [eastern] NC for the next year. George is semi-retired from the Physics Department at NC State University. Elizabeth is a senior budget analyst in the Governor's Education section. Jonathan is a civil engineer who works for the Dept of Transportation as a transportation manager for the largest metropolitan area in NC. William is majoring in Health and Fitness and is also a certified Personal Trainer. When George retires completely I will as well and then we plan to do a lot of traveling in our RV.
I had read Karen Pryor’s Readers Digest article about LLL years before and had tucked that information away in my mind for when I was expecting a baby. That’s what led me to look for LLL. What I enjoyed most as a Leader was learning “stuff.” I was always the local “expert” on new information. (For example, I remember being completely in awe of this fact: the mothers’ milk of premies was different from the mothers’ milk of full term babies in such a way as to be able to meet the unique needs of premies.) I was also very organized and conscientious in day-to-day things—traits which stood me in good stead in my various jobs. I was a capable writer, too, very handy in the ACLA, ACL, and RA jobs I held!
Absolutely! I felt protected because of my life style choices. I breastfed three children a total of 10 years, exercised, maintained a normal weight, ate a low fat diet, and drank little/no alcohol. But after I got over my shock, anger, and sense of betrayal, and started to learn more about risks, I realized that the top two risks—being female and growing older—were ones I have no control over. The other things I listed above can reduce risk, but are no guarantee.For instance, at least a year of breastfeeding can reduce risk of developing breast cancer in pre-menopausal years by about one third, but two thirds of the risk is still there! And we cannot tell any individual woman what her specific risk is, we can only give aggregate information: “Out of 100 women who have breastfed at least a year, one third of them are less likely to be diagnosed with breast cancer pre-menopausally.”
Partly, I suppose. I was a Regional Administrator for LLL when I was diagnosed and continued in that capacity for a couple of years. What happened was that breast cancer “involuntarily re-organized my life.” I was faced with a life-threatening disease and it seemed more important than breastfeeding and mothering—things that had been the highest priority in my life for 20 years.
I was very “pissed” that cancer had changed my life—without my consent!
I imagine others who are faced with unforseen things like accidents, natural disasters, “downsizing,” etc., have the same reaction. Some people cope well from the start (probably few), some people cope poorly (probably more of these) and some people cope eventually (that was me—eventually turning lemons into lemonade!).
My curiosity for learning led me to what I am doing now. First I was interested in understanding the medical aspects of breast cancer. The short hand explanation is that as long as the best medical science had to offer me was an educated guess, I wanted to be one of the educated ones making the guesses about my life. I was diagnosed in 1990 about the same time the national breast cancer (NBCC) advocacy movement was born (1991) and was encouraged to go to Washington to lobby for increased breast cancer research. It was educational, exciting, and very empowering.When we were successful, leaders of the NBCC decided we needed to have a rationale for how much money we lobbied for so they invited the leading researchers to present information on what good science there was waiting to be funded and how much it would take to get that done. That was my first introduction to scientific presentations on breast cancer and it whetted my appetite. (We lobbied for the specific $ that was recommended and got it passed.)
In order to learn more, I began to attend research meetings when and wherever I could and realized that there is a vast difference between clinical research (medically focused on people) and basic science research (with test tubes, cell lines, genes, proteins, etc.). While I could somewhat figure out clinical research, I had no clue about basic science. I came to the conclusion that whatever eventually benefits patients probably passed through a lab somewhere in its journey to effectiveness and use. So I needed to understand basic science as well.
I asked a researcher if he would help me identify articles that would answer some of my questions. He and I did what amounted to a private tutorial for about a year. (I recently learned that his experience with me convinced him that untutored but interested people could learn to understand some basic concepts about science. He was one of several scientists who developed an intensive five day course to introduce breast cancer advocates to cancer biology, genetics, epidemiology, and research advocacy strategies which is still going after 10 years.)As a result of all this learning, which I did out of pure personal curiosity with no expectation that it would lead to anything, I was in the right place at the right time when the research community
began to open up their discussions to participation by patient advocates.I began working in a breast cancer research program at Duke Medical Center in the mid 1990s, writing a newsletter for them and participating in their monthly scientific discussions. It also led to my name being passed around in the research community as someone who wasn’t afraid to bring patient issues into scientific discussions, so I have done a lot on the national level as well, such as National Cancer Institute committees, grant reviews, etc.
Most recently I have been doing three things in research advocacy:
1) leading a working group in NC focused on educating the medical community about lymphedema, a swelling caused by a back up of lymph fluid in part of the body. For women with breast cancer, it occurs in an arm affected by removal of or radiation to lymph nodes in the arm pit. It can also affect a leg if lymph nodes in the groin are similarly treated.2) developing and leading a patient advocate committee in a clinical trial cooperative group. The one I am affiliated with (there are nine) is focused on developing clinical studies involving surgery. For instance, a study in head and neck cancer is looking at whether adding a lymph node dissection in the neck improves the outcome for patients (longer life or longer time before cancer returns) compared to standard surgery.
3) I am still working in the breast cancer research program at Duke where I was first paid to do what I have come to love as much as I loved LLL! (I often think of the title of a book I read twenty years ago, Do What You Love and the Money Will Follow.)
Right now, in addition to the newsletter and monthly scientific discussions, I sit on two Data Safety Monitoring Committees and The Executive Committees of both the research program and the Cancer Center at Duke. I also participate in a weekly cancer genomics discussion group giving my two cents worth on patient issues whenever it is relevant in the scientific discussion. I will be concentrating this year on recruiting other advocates to participate in this program so when I move on, someone else will be there to carry on.
Oh Lord, yes! Through LLL I developed a comfort level with being assertive and communicating with members of the medical community. I learned about group dynamics, how to recruit volunteers, how to lead a group, how to delegate, how to be organized, and how to write effectively and clearly. Something perhaps more important to me than to other Leaders was my interest in and curiosity about new breastfeeding information. The way I learned in the LLL context translated easily to learning medical and scientific information.
A group of us retired Leaders have been meeting monthly for twenty years! First it was to provide support for each other in mothering teenagers with LLL philosophy. Inevitably, we supported each other through various other crises. Eventually our teens all grew up and the primary motivation became just enjoying the company of like-minded friends. We usually take a long weekend trip together at least once a year. I’ve also spoken at LLL Conferences.
Our mutual, unspoken assumption—that we won’t get breast cancer because we have used our breasts the way nature intended—is, sadly, not true. At least three other Leaders in my state were diagnosed in their 30s while nursing toddlers. It can happen to you. Although about one in four women with breast cancer are diagnosed under age 50, the peak age of diagnosis for women is in their 60s. (With baby boomers approaching this decade, I expect a lot more diagnoses in the coming years.)The risk of a breast cancer diagnosis is rare at a young age (about 1 in 25,000 for 25-year-olds), becoming more common as a woman grows older (about 1 in 50 at age 50), only reaching 1 in 9 for women in the ninth decade of life. That said, the prognosis for those who are diagnosed is getting better all the time because of earlier diagnosis and better treatments. Women are less likely to die from breast cancer today than at any previous time in history. Although breast cancer changed my life in ways that were not welcome at the time, I am alive and thriving 15 years after the diagnosis of two breast cancers in a single year. Life goes on!
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This interview first appeared in Continuum, Vol. 18, No. 3, 2004
