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Breast cancer changes their lives but not their strength and courage
Laurie Davis is a photogenic calendar girl for '09 -- but not by choice.
A diagnosis of breast cancer on March 4 catapulted her into a special sisterhood called Beyond Boobs!, a local support group for young women diagnosed with breast cancer before menopause. Like Laurie, many of them posed for the group's annual fund-raising calendar.
In recognition of October as National Breast Cancer Awareness Month, Beyond Boobs! co-founders Mary Beth Gibson and Rene Bowditch and several members share their stories about denial, acceptance, strength and courage -- all mixed with healthy doses of humor.
"My first thought was, 'I'm too young to die,' '' says Laurie, 36. She's a former Air Force nurse and now a Newport News stay-at-home mother of three kids: Alex, 9; Rebecca, 7; and Mary, 4. "I still have too much to do! I don't have my scrapbooks up to date."
"I was alone with my four-year-old, playing Barbies, so I couldn't totally lose it. I cried later in the shower where no one could hear me."
Our thanks to Laurie Davis and the six other local women -- Tracey Dickson Scott, Carol Downey, Charmaine Jackson, Margaret Stockton, Terri Harris and Alice Caldwell -- who so graciously shared their stories in the following interviews.
Residence: Yorktown, VA
Family: Married to Chris with three children: Alex, 9, Rebecca, 7, and Mary, 4.
Pastimes: Sewing, reading, crochet and writing.
Career: Stay-at-home-mom (formerly a registered nurse in the US Air Force before having children)
Education: Bachelor of Science in Nursing from Auburn University, Al.
What keeps you together? My family and friends. They are constantly checking on me and making sure I have everything I need, giving me a shoulder to cry on, and giving me their prayers. I pray a lot and try to focus on the good things in my life, especially my husband and children. They amaze me every day with their wonderful spirits. They have definitely learned and grown through this experience, too. It's a part of their childhoods now, and although I wouldn't have wanted it, they have learned some valuable life lessons.
When and how did you find out you had breast cancer? I was diagnosed on March 4 (everyone remembers the exact date of diagnosis!). I found the lump myself, and my family doctor sent me to the Dorothy G. Hoefer Breast Center thinking it was probably nothing. I had a mammogram and ultrasound and the radiologist immediately ordered a biopsy for that week. When the results came in the next week, I received a phone call from my doctor's nurse. That was when my life began to change!
What was your first thought and action? My first thought was, "Oh, Crap! I'm too young to die! I still have too much to do! I don't have my scrapbooks up to date!" I was alone with my 4-year-old playing Barbies so I couldn't totally lose it. (I cried later in the shower where no one could hear me.) I called my husband and my best friend to come be with me. She brought chocolate and watched my kids while my husband took me in for the appointment that day. The doctor and his nurse explained everything and were very compassionate and supportive, even referring me to a support group for younger women with breast cancer called Beyond Boobs.
What has been your treatment and where did you go? Did you get a second opinion and why? So far, my treatment has consisted of eight rounds of chemotherapy every two to three weeks. I will undergo surgery on September 12 to remove the tumor. After four weeks of healing, I will undergo radiation therapy for five to six weeks (Monday thru Friday!). I DID get a second opinion from a medical oncologist, because every book I read advised doing so and it helped me to know that my treatment plan was the right one. I got a different point of view from a third party. We didn't even let him see the first doctor's notes so as to get his unbiased opinion.
Breast reconstruction, type and why you made that choice? I have not had surgery yet, but am scheduled for a lumpectomy on September 12. I will not need reconstruction.
What have you not gotten from people you wish you had gotten? My friends and family have been awesome! I think it is important to let people help you through this ordeal. It is a gift and a blessing to both you and them. It gives people the chance to feel involved and helpful. If they offer help, accept it. Every meal and babysitting offer will show you just how much you are loved. For those who want to help, JUST DO IT! Don't take "no" for an answer. Just take a meal or insist on a babysitting session. Also, keep in touch! Keep calling and e-mailing and sending cards! Don't worry about disturbing her. She can always call you back, but at least she knows you are thinking about her.
What would you do differently in treatment or anything else if you found out today you had breast cancer? Nothing, so far.
How has breast cancer changed your lifestyle and your daily thinking? I think I live more in the moment. I am much more likely to advocate taking a vacation or buying something we want NOW rather than saving and waiting. I am more likely to do something spontaneous with my kids or husband. I also try not to sweat the small stuff. Things that I would have fretted and worried about doing or not doing are just not that important any more.
What do you wish you had known before your diagnosis that you know now? More about cancer! When I was diagnosed, I knew nothing about cancer. I immediately became the acting president and CEO of my own cancer. I read every book and credible website I could find with information about breast cancer and its treatments. I joined a support group, Beyond Boobs, for young women with breast cancer and compared notes with other survivors. I made lists of questions to ask my doctors. I feel it is important to know what you are dealing with and be able to discuss it with your doctors intelligently rather than just blindly following whatever the doctor tells you. I challenge my doctors with lists of questions and make sure I understand everything before I agree to any treatment plan.
How did it impact your career? I am a stay-at-home mom of three young children so it was really hard to go through chemo with them at home. My family comes for every round of chemo to help with the kids and the house. I hired a young lady to be my mother's helper for days that I don't have the energy to chase the kids around. She has been a big help! I also hired a housekeeper to come every two weeks. At times, I feel guilty for not being able to do the things I'd like to do with my family, but I try to remember, "this too shall pass." I have to come to peace with letting my husband pick up the slack when I need help.
Personal life and relationships: My husband and I have a great marriage. This experience has definitely changed us. Just when I thought he could not be any more caring, he turned it up to maximum intensity! He goes to every doctor's appointment and every chemotherapy session. He makes sure I take my medicine and drink enough water and get enough rest. He makes sure the kids do all kinds of fun things over the summer even if I don't feel like participating. He also loves me even with no hair and a swollen face. He leaves me love notes and cards hidden around the house and in my car. He tells me I'm beautiful every day. He has always done that and now I know he always will!! As for friends, I have seen how wonderful mine are through this ordeal. Close friends and far-away friends have showered me with support and encouragement. I've had a Hat Party, cards, flowers, meals, babysitting, yard work, kid transportation, and lots more from my friends and family. My mom and parents-in-law have been coming to my home to spend a week after each chemo session. I don't know what I would have done without them. They have done all of my laundry and dishes and cooking when I couldn't muster the energy to do it myself.
How you view yourself? Sometimes, I view myself as ugly and weak. I am bald and usually have a swollen face from the steroids and chemo. I have gained weight due to the steroids (and the comfort foods!). I don't have the energy that I did and can't work out or run around with the kids as much as I'd like. It is hard to look past the image in the mirror at times. BUT, most of the time, I see myself as strong. I know that I have not had it nearly as bad as many women and that my prognosis is excellent, so I am blessed and thankful. I try to keep a positive attitude knowing that this is all temporary. I've made it through chemotherapy so I feel like it's all downhill from here! I am bald, but I don't mind it too much -- it's especially nice when I'm having a chemotherapy-induced hot flash! I have had many funny experiences through going out and about without a wig or scarf. I am an oddity for sure, but so many people have approached me with words of encouragement ("You go, girl" or " I admire your boldness"). It has been an interesting experience. My kids and husband actually prefer me without a head covering. Strange!
Please feel free to share anything else you would like. Some helpful things for the newly-diagnosed: To inform extended family and friends without making hundreds of phone calls or risking missing someone, I sent a mass e-mail to all of those I thought should know and included a link to a blog that I set up to update them on things. Setting up a blog is free and easy to do on many websites and it allows you to update people without calling and it allows them to check on you and leave you messages. Even my mom's friends, whom I do not even know, check in on me. I have been contacted by long lost friends, as they were linked to my blog through mutual friends. It has been really great.
TRACEY DICKSON SCOTT
Family: I recently married a wonderful man, Lorne, in June of this year. I have one stepson, a fabulous mother, father, sisters and brother.
Pastimes: Running, working out, doing voice overs, journalism, shopping, and now being involved in breast cancer support groups.
Career: I am a flight attendant for Southwest Airlines and have been there for 12 years.
Education: I am a graduate of the Art Institute of Atlanta.
What keeps you together? Prayer, hope and encouragement from the amazing people I have met along this journey.
When and how did you find out you had breast cancer? I found this lump in January of this year. I had scratched my right breast and noticed there was a lump there. I finally got in to see my gynocologist, Dr. Kathy O'Connell, who examined me for the lump and told me just by feeling it that it indeed felt like cancer. She got me in for a mammogram a few days later, and when I was asked to stay for an ultrasound, I knew I was in trouble. The radiologist told me that I needed to be seen the very next day for a biopsy and that she was certain it would come back positive for breast cancer. That was April 1, and on April 4, I was diagnosed with Stage 2 infiltrating ductal carcinoma.
What was your first thought and action? My first thought and question was is this a death sentence??? The radiologist, Dr. Alison, looked me straight in the eyes and I will NEVER forget her words. She said "No BUT you are gonna have to jump through hoops to get free of this, but WE will get you there." My second thought was okay, just tell me what I gotta do to start jumpin' through hoops!! The first action I took was making all the phone calls to let family and friends know the outcome of the test results and that I indeed had cancer. I remember screaming with hurt and pain on the inside but putting on a happy positive face while delivering the news. I knew I had to be strong for them so that I myself wouldn't fall apart. Because I thought if they break down, then so will I.
What has been your treatment and where did you go? Did you get a second opionion and why? My first treatment was a few weeks after my diagnosis. I first had to get a port installed above my breast to deliver chemo to my body. I then began receiving treatment at Virginia Oncology Associates under the care of Dr. Harden. My surgeon, Dr. Hoefer, thought it best to get chemo going before surgery and Dr. Harden agreed. So in April, I began a dose dense regimen of Adriamycin and Cytoxan every other week for four treatments, followed by Taxotere once every three weeks for four treaments. I will also be given a drug called Herceptin for a year to lower possible reoccurrence of this aggresive HER+ type breast cancer that I have. Herceptin will lower my risk of getting breast cancer again by more than 50 percent!! I am currently getting a second opinion on radiation or no radiation and what type of reconstruction would be best. I am doing so because I want to feel solid in my decisions.
Breast reconstruction, type and why you made that choice? I am leaning towards a bilateral with hopefully immediate breast reconstruction. The expanders would be put in at the time of the mastectomy and filled each week until the skin is stretched and the desired size is reached. Then weeks later, the expanders would be removed and replaced with silicone implants. Nipple tattooing would also be a part of reconstruction.
What would you do differently in treatment or anything else if you found out today you had breast cancer? Well, first of all I would have had every body scan known to man done up front to put my fears of spread at ease. For me, I did not get all the scans because chemo began so quickly. I also would have been sure to drink the tons of water that all my breast cancer sisters kept telling me to drink. But in the begining, I felt so sick that the thought of drinking water made me want to throw up. But I think it actually would have made me feel better.
How has breast cancer changed your lifestyle and your daily thinking? Breast cancer has made me a MUCH better person. I can actually see my blessings. I feel like before breast cancer, I was going through life with sun shades on and now they have been removed and I can see ALL the fabulous blessings that God has given me. Now I don't sweat the small stuff and like someone once said before, it's ALL small stuff! I also didn't realize how wonderful and strong the man in my life was. My husband, Lorne, who had been with me for nine -- yes, nine -- years showed me unconditional love and continues to be a rock for me through this journey. I also didn't realize what the love of a mother and father for their child can do. I feel the love of my family every day, and it heals my soul!!
What do you wish you had known before your diagnosis that you know now? I wish I had known that a swollen node can be a sign of breast cancer because I went to the doctor for the same node last spring and was told it was normal. Had I known it could have been a symptom of breast cancer, I would have insisted on a mammogram, but who knew, I was only 39 at the time.
How did it impact your career? Since I am a flight attendant, which requires being closed in on a plane with sometimes very ill people, I have been pulled from work by my doctor. The possibility of me getting sick could delay my treatment.
Personal life and relationships: I know that I value them more. The love from my husband, Lorne, my mom, dad, sisters and brother are priceless. Also my friends have been unreal. I don't let very much time go by before I tell them that I love them. The support I have recieved from total strangers is UNBELIEVABLE!! This illness brings out the good in people, it's amazing!! For instance, just last week I was in the grocery store and the cashier and I were talking about my treatment and what was next for me. As I was getting my change and leaving, the lady behind me said, I'm glad they caught it early and I'm gonna pray for you. My response was thank you so much because prayer is better than medicine. Her sincerity and warmth blew me away!!!
How you view yourself? Stronger than I ever thought I was.
Family: Husband, Bill; children Elizabeth, 21, Robert, 17, and Anne Talbot, who will be 16 in October; and two Golden Retrievers, Riley and Gracie!
Pastimes: My family would say that my pastime is "tilting at windmills" (a la Don Quixote) while trying to solve all of the problems in the world! But I really enjoy most anything! I love traveling, watching all sports, and the beach -- anything but cold weather!
Career: Wife and mom
Education: Bachelor of Science in Computer and Information Sciences, University of Florida.
What keeps you together? That's easy- Faith, Family and Friends! (And my pups help!)
When and how did you find out you had breast cancer? I was diagnosed with breast cancer (Stage 2-A) in October 1998. I was living in Roanoke, Va., at the time. I truly believe there was divine intervention in creating the circumstances that allowed my cancer to be discovered early: At my annual physical my doctor insisted I have a screening mammogram sometime in the next year. She had ordered one for me at my previous yearly exam because I was turning 40, but I had promptly forgotten her recommendation and never followed through. Having no incidence of breast cancer in my family, coupled with a clean mammogram at age 35, I had the sense that it was really unnecessary. But, I called for an appointment as I was leaving her office, and, as divine intervention would have it, they could take me that afternoon! The rest, as they say, is history. Inconclusive micro-calcifications appeared in my right breast. My doctor felt even though it could be nothing, we should make sure. Fortunately for me, she did not take a wait and see approach! The pathology report confirmed I had breast cancer.
What was you first thought and action? I think everyone's first thought is," I don't want to die!" This feeling of panic was even stronger in me, because my only sibling died of Non-Hodgkin's Lymphoma seven years prior. I absolutely dreaded telling my parents even more than telling my children. But after the shock of the diagnosis, I think you then feel as if you have to get this horrible invader out of your body. I went into "take charge" mode, trying to learn everything I could about the disease and any factors that I could control to help fight it. But it was so frustrating! I felt I had been doing all of the "right things" prior to my diagnosis. I had no real risk factors: I had no family history, did not smoke, breast-fed all of my children, tried to eat right, exercise, and didn't drink excessively.
What has been your treatment and where did you go? Did you get a second opinion and why? My diagnosis and initial treatment took place in the Roanoke area at Lewis Gale Hospital. I think most women feel like their doctors are "the best," and I am no different. My surgeon was especially compassionate, inviting us to bring a tape recorder to our initial meeting since the emotion of the moment would likely make us forget some of the conversation. He encouraged us to seek a second opinion, which we did at the University of Virginia. Both surgical teams recommended a lumpectomy, which is the surgical procedure I chose. This was primarily due to our sense that it was caught very early and the tumor size would be small. As luck would have it, the tumor was somewhat larger than we could assume from the mammogram, so I ended up having a "chunk-ectomy"! (Not hard to do when you are barely a "B" cup!) After surgery and tumor typing, chemotherapy and radiation were recommended. Again, my oncologist referred me to Duke University for a second opinion, and again, fortunately, everyone was in agreement on the protocol. I opted to throw the "big guns" at my cancer because I was a mother of young children, and I wanted to hit it hard. I had four rounds of "A/C" (Adriamycin and Cytoxan) and 33 radiation treatments, followed by seven years of Tamoxifen. Why did I get second opinions? Treating cancer is based on risk vs. benefit decisions. Although I strongly trusted and respected my physicians, they certainly function from their own bias based on their experiences. A second opinion from physicians completely independent of mine gave me a fuller understanding of the risks I was taking and the benefits I would hopefully gain. I appreciated my team offering this, and I would counsel anyone to push for it for their own peace of mind and more complete understanding. After my initial treatment, we moved to the Tidewater area, where I continue to have the best care possible through Peninsula Cancer Institute and Riverside Healthcare System. Since I am still considered somewhat young (ha!), my doctors are always on alert for reoccurrence or metastasis. And, as the ranks of young survivors grow, there are new approaches that we constantly review. The state-of-the-art care gives me real peace of mind.
Breast reconstruction, type, and why you made that choice? A lumpectomy is designed to preserve as much of the breast as possible, so I did not have any reconstruction. Again, this method was chosen since we assumed my tumor was very small. Outcomes for lumpectomy plus radiation were considered equal to a mastectomy. In retrospect, because the amount of tissue removed was greater than expected, I probably should have considered scar repair immediately following my surgery for cosmetic purposes.
What have you not gotten from people you wish you had gotten? My friends and family were amazing! But it's an odd situation because you really don't even know what you want or need at the time -- you are basically in shock. I will say, though, that I think it's really helpful to have a friend with whom you can vent. Chemo does some really yucky things to your body, and to be able to talk about it (and find that it is normal) is key. That's why groups like Beyond Boobs are so important. Now with blogs and e-mail, it's easier to share information than when I was treated. I would advise women to take advantage of that type of community. When I was treated, the American Cancer Society sent a sweet older survivor to meet with me, armed with some simple exercises to help with recovery. We could not have been more different! She could not relate to my needs or circumstances.
What would you do differently if you found out today you had cancer? That's an interesting question! The treatment options have become more refined in the last 10 years; more tumor-type specific. So it's possible my course of treatment would have varied slightly. I had a port-a-cath implanted for chemo infusion -- I would definitely do that again. But it's like childbirth -- you DO forget the pain! So I can't really think of anything significant.
How has breast cancer changed your lifestyle? Life has changed in several ways. First, you never finish being a patient. Every blood test, every pain is looked at differently when you have had cancer. It only takes one blood value change to bring all the fears and feelings slamming back! Secondly, your attitude is forever changed. "They can't bother me -- I went through cancer" is often my mindset. It has given me a confidence I did not have before. Plus, it's a great excuse! There are all kinds of mental and physical things that can be blamed on chemo! (Smile!) You have to develop a sense of humor, too. I had lots of fun with my wig! While I was in treatment, I wanted to keep the impact on my children to a minimum, so on the advice of a friend, I purchased a wig that closely matched my hair before I started chemo. I worried that the sight of me bald would be troublesome to my kids. It was a great wig, not too expensive and synthetic, and I wore it all the time to appear as normal as possible. It was neat -- I just threw my hair in the washer with a little woolite and whatever other laundry I had and voila! Clean hair and clean laundry at the same time! I found out the hard way that it didn't stay on too well -- I was working out with my trainer, and the first time I lay on the bench, my hair fell off! I swam with other women on an adult /child swim team. Afterwards, I'd take my hair off the shelf, put it back on and for the first time in my life, I was the first one ready to go!
What do you wish you had known? The one thing I wish I had known was that you need time to mourn. Cancer is a true loss (and not just of cleavage!) and should be treated as such. It has taken me years to try to work through my feelings. I think I was so worried about maintaining normalcy when in reality, nothing was normal! Again, this is where I think a support group of people in similar circumstances is so important. Being able to share the anger and fear in a safe setting is so important to working through the loss.
How did it impact your career? Personal life? As a stay-at-home mom, I can't say it affected my career directly. But I do feel like I lost the best part of a year in my children's lives. I certainly didn't participate in their activities as I normally would. I guess the good news is they have very little memory of me being sick, so it didn't scar them for life! There is no doubt that my relationship with my husband and several friends grew stronger. My husband is rather stoic, and I hadn't realized how much my cancer had impacted him until my five-year mark, when he threw me an amazing surprise celebration! I have had experiences that I would not have had if I hadn't had cancer, such as participating in the Avon 3-Day 60-Mile Walk in San Francisco. We walked from San Jose to the Golden Gate Bridge, which was an amazing experience. Watching thousands of survivors in various stages and ages cross the finish line together was incredibly moving! But I must add, I have always felt a little guilty when people applaud (such as the survivor lap in Relay for Life), because I don't really feel like I have done anything applause-worthy!
How do you view yourself? It's hard not to think of myself as a victim, but really, cancer is a gift in many ways. I have had to come to grips with my own mortality and the meaning of life and let go of vanity and conceit. I view myself as smarter and stronger for having had this experience. I guess my biggest message to women facing this disease is that there is life on the other side! You can get through it and you will be OK. I was lucky because I had relatively few setbacks, side effects or complications. I know women who have suffered much more that I did! But attitude has a big effect on outcome. Again, that is why the support groups are so important. You can vent, but get uplifted by women who have been through it. I feel so fortunate; I feel like I need to do something special with my life to repay the gift of good health that I have been given. And that is why I am always tilting at windmills!
Family: Three kids (his, mine, ours), one cat, one husband
Pastimes: I enjoy running/walking, reading trash novels (you know what I mean: Nora Roberts...), and making glass beads
Career: Science teacher
Education: Bachelor of Arts in Biological Sciences, Southern Illinois University, Master of Education, The College of William and Mary
What keeps you together: Some days, duct tape. Particularly after all these surgeries... I have a pretty healthy sense of the ridiculous and try not to take myself too seriously. I found this saying once on a tee-shirt that aptly describes my situation and attitude about it, which simply says, "Hell yes, they're fake! The old ones tried to kill me!" My husband, in addition to being wildly cute, is also uber supportive. (He even does laundry. No, he's not for sale!)
When and how did you find out you had breast cancer? I found a lump right before I went out of town for a glass convention (It's called the Gathering, but when I say that, everyone thinks I'm wiccan..) and it didn't go away, so immediately when I got back I had my general practitioner (Dr. Eric Obie) look at it. His mom is a cancer nurse, so he's very in tune to these irregularities. Turns out there were some other weird things going on that I noticed but didn't really consider that it could be cancer. I'd been having those "hmmm" mammograms for years, had several biopsies because of calcifications, so I kind of knew that one day, all the "it's nothings" would run out. What's really scary is that the mammograms AFTER the lump didn't show up anything all that interesting. I had this thickening under my breast that I now know was something called peau d'orange, because it resembles the dimpled skin of an orange, that my GP thought I should have checked out. When I asked the ultrasound tech about it, she said it was probably something that developed from wearing underwire bras. (Would I make that up?) Hello? That's CANCER.
What was your first thought and action? I think the radiologist (who apparently isn't all that great at reading mammograms) was thinking I was going to have a meltdown, because they call you in, and there's Kleenex on the table and it's all so melodramatic, like an episode of ER, but my initial reaction to the diagnosis was, "Well, it finally happened. What are we going to do about it?" I really didn't get all that emotional about it, at least not at first, though my mother was freaking out a bit.
What has been your treatment and where did you go? I talked with my doctor about treatment options, and since we were all of the opinion that it wasn't anything extensive, but a mastectomy was probably the best course of action, we lined up a plastic surgeon to do the immediate reconstruction at the same time. When my surgeon (Dr. Elizabeth O'Neil, who incidentally, walks on water) opened me up to remove what she thought would be a simple encapsulated mass (as per the genius diagnosis from the mammogram), there was cancer everywhere. The peau d'orange? Cancer. I had 13 lymph nodes removed but cancer was only in three of them. The worst part was for my husband, because Dr. O'Neil came out of surgery and said that they had to do all this digging out of the cancer, that my treatment would now involve chemo and radiation, and reconstruction? Not today. So he got the job of having to tell me that I was in for a bumpy ride, and that what I thought I was going to look like after surgery was not going to come to fruition, and that I'd better get used to the unicorn look, because it just became the new "normal." After the mastectomy, I had the ACT (Adriamycin, Cytoxan,Taxol) chemo treatment every 21 days, which started out not so bad, but ended pretty badly. I ended up having to take about 10 weeks off from work because I kept getting these secondary infections which were just knocking me flat. The York County School Division was very supportive, particularly the Tabb High School staff. Mr. Zanca was amazing, allowing me to have a flexible schedule so I could manage doctor's appointments without missing student contact time. What I really hated about chemo was the constant, 24-hour nausea and the exhaustion. I had been a marathon runner, and during chemo, I could barely walk up the driveway. The hair thing? Well, yeah, that was pretty awful, though I discovered that I have a big birthmark on my head that no one had ever seen before. (Born with a headful!) My dad suggested that I have flames tattooed on my head -- how is that helpful?? I was scared that my hair would come back in a different color or texture -- even Dr. O'Neil said it sometimes comes back in really grey. It was curly for about two months but reverted back to it's original boring brown color and style, though nowhere near as thick. Since my hair was thick enough for three people, to look at me now, you'd never know there was anything wrong with it, but I can tell how much thinner it is. That's why I keep it short.
Did you get a second opinion and why? No, I would trust Dr. O'Neil with my life. (And did) She's awesome!
Breast reconstruction, type and why you made that choice? I went around with one breast for a while (the unicorn phase) and had the BRAC genetic test done but did not test positive. Because the cancer was nasty (Stage 3-A), my oncologist said it would be a good idea to have a prophylactic mastectomy of the left breast, which I did about six months after finishing chemo and radiation. I went through some really bad plastic surgery experiences. He went on and on about his vast experience, but I don't think he really worked on that many women at all. I asked for references, or to be put in contact with people who've had the surgery done, and he said something to the effect of, "Well, women who've had normal breast augmentation are always proud to show off the work, but reconstruction, well, they're not that eager to talk about it." You know how people who try too hard to convince you that they know what they're doing set off all these alarm bells? I did not ever feel confident in his care, and was concerned from the very beginning that I was getting substandard care, and I feared that my reconstruction was going to be a big scary mess. (If you don't believe me, look on the Internet for breast reconstruction pictures. The "after" pictures are sometimes worse looking than the "before.') Unfortunately, I was right. I was in excruciating pain after having surgery to try a tissue expander on the radiated side, plus, he added a new incision for God knows what reason, since I already had one from the cancer surgery/mastectomy. About two weeks after the surgery, I got an infection on that side, and made the decision to have him take it out. I was literally living on Percoset and Ibuprofen, the pain was that horrendous. He continued to try to get me to stick it out, but I had had enough pain for one lifetime. Even after the "surgery" to remove the expander, done in his office to presumably save on expenses, they had no pain pills for me, (I was supposed to bring my own, who knew?) so I left his office literally crying I was in so much pain. All my memories from this guy are pain, agony and disfigurement. My skin healed by attaching to my chest wall, creating a double "dent" that cannot be repaired. I was told that Williamsburg is just too conservative and insular to sue a bad doctor, so I'm just out of luck. After all of this drama, he wanted to try an abdominal flap reconstruction, (and would only consider the lat-flap reconstruction as a last resort), though two other plastic surgeons since have assured me that I was not a good candidate for this surgery, because I'm not overly fat in that area -- there wasn't enough fat and tissue to create a breast. So I shudder to think what would have happened had I not had the courage to give this guy the heave-ho and seek out another doctor. Luckily, I did some research and found Dr. Helena Guarda in Suffolk, whose specialty is breast reconstruction. She's hilarious, extremely dedicated and a very talented plastic surgeon. She advised the lat flap for me as really my only option, since my skin was so damaged from radiation and poor treatments. I had the surgery in June of last year, which involved taking skin and my latissimus muscle and adding them to the radiated area, then inserting a tissue expander to make room for the silicone implant. Every time I went in for the expansion, I would hold my breath, waiting for the pain, but it never really came. I had a prescription for Percoset that I never had filled, that's how little pain I experienced from the expansion. I've had one surgery to straighten things out a little, and now I look pretty normal (with a dent) even in a bathing suit.
What have you not gotten from people you wish you had gotten? I wish I had known the Beyond Boobs ladies in the beginning of this whole process. I didn't go to support meetings, because I always found that every one's experience with this disease is so different, I felt like I had to find my own way through it. These ladies, I'm sure, would be a real lifesaver during all the beginning stuff, where you're so scared (57 percent chance of survival to five years -- tell me that doesn't scare you when your baby is only 5 years old?) I also didn't get advice early enough about lymphedema, and since returning from a plane trip, I have been dealing with the swelling ever since. The gift that keeps on giving. I'm always amazed at how bold people are when you're wearing a sleeve or glove on your arm. "Did you burn yourself?" Wow, if I did, my arm would be twice this size, so no. But many people have it way worse than me, so I'll not complain.
What would you do differently in treatment or anything else if you found out today you had breast cancer? I truly think I scared myself by over-researching my options and prognosis. I think a positive attitude is the most important thing, and though it sounds trite, you really do need to just live each day, one at a time, and stop sweating the small stuff. I think it's very important to surround yourself with positive thinking people, and do whatever you can to educate yourself on treatment options, nutrition, and healthy living for the rest of your life. I also would have sought out support groups to discuss doctors and treatments. The best part about the Beyond Boobs group is that you don't ever have to explain yourself, because they have all been there, done that. Another thing, trust your instincts. You are going to be with your doctors for a long time. If you don't completely have faith in them, get another one and fast.
How has breast cancer changed your lifestyle and your daily thinking? The lymphedema thing is annoying. I'd really like to NOT have to wear this stupid glove every day, because it draws attention to my condition, not me the person. I have to make different wardrobe choices, but it's not that big of a deal. My fake boobs actually look better and fuller than the ones that tried to kill me, so why complain? I will tell you something that IS true and hilarious: In my unicorn phase, some days I would think, "Perhaps I can just wear one of my old forgotten bras and put the prosthesis in the pocket." A logical, and yet, tragically flawed plan. It was fine when standing upright, but when I went to bend over to pick something up off the floor, the prosthetic boob plopped out of its moorings, onto the floor. Now if you can't laugh at yourself at that point, you are truly taking yourself too seriously. On a more serious note, every time I hear that someone has died from breast cancer, I feel guilty and scared that I could be next. I know that three years out is a good milestone for me, but I'm hoping I have a lot more years to go, and I know that I am never truly out of the woods.
What do you wish you had known before your diagnosis that you know now? That there are a lot of resources out there for people with cancer, and that just because someone doesn't experience exactly what you're going through, they still "get it" more than the average person who just feels bad for you. I wish I had made the effort to get some support from other survivors early on. I never felt that I was going it alone, as my family has been super, but even they don't get it when you're making decisions about having fake nipples tattooed on your fake chest. It's a weird world, let me tell ya. I also wish I'd known how hard it would be to breathe after having part of my lung radiated. I'm a runner, and it still is really difficult for me to breathe when it's humid outside. I did, however, just complete my first 5K in four years this Fourth of July. (Ok, I didn't win or anything, but I finished, so yay me!)
How did it impact your career? The Tabb High faculty and administration were amazingly supportive. People rushed to my aid by donating personal days to me when I had to take off work from the affects of chemo and had no sick days left (they wouldn't let my husband give me any of his days). Mr. Zanca, who was principal at the time, could not have been more supportive, arranging my daily schedule so that I could leave for treatments. Parents of my students were not as supportive. One mother even told me how inconvenienced her child was in my absence. (Truly!) But I did return after 10 weeks out and finished out the school year without incident, going for daily radiation treatments and patiently waiting for my hair to grow back. For so long, though, the disease and treatments define you -- everyone sees the bald head and thinks of you as a "cancer" patient first, then as a person/teacher/artist. I was glad to get my hair back so that I could be me again. The nice thing (if there is one) about breast cancer is that once you're done with the hair loss thing, no one can tell that you have cancer, unless you're really Bohemian and go around braless. That's why I hate this lymphedema thing -- it is always a reminder that there's something wrong with me, and everyone can see it.
Personal life and relationships? Nothing really changed in my personal life, though I'm sure my husband was appropriately freaked out by my health issues. He just didn't dump on me with his issues, as I was having a few of my own. My husband just keeps saying that this is the "new normal." I think my daughter gained a new insight into what strength and determination mean, but I don't think my kids were ever scared that I was going to die, because I just never thought that I would. I looked at the treatments as something to endure while it was happening, and then it would be over, and life would go on. And I'm not saying this because I am some sort of tree-hugging Jesus freak, I just believe that there is no point in living your life as though you're going to die. I had things to do, and this cancer thing was pretty darn annoying. If you're living your life, just do it. And live out loud because, face it, you've earned it.
How you view yourself? I am extremely laid back, probably more so since this happened because so many people get completely freaked out about the stupidest stuff. I just can't sweat the small stuff anymore. I don't even get road rage, I just try to keep a book in the car for traffic stops and doctor's offices. My doctor laughs at me because I always bring some trashy novel to appointments, but hey, if she didn't overbook, I wouldn't need it! I used to think of myself as fairly sexy, nice (HA!) rack, good legs, and then it all went to hell in a handbasket and my self esteem really took a beating. I mean, who would find me sexy? After a while, though, I got used to this new patchwork body and discovered that sex appeal is a state of mind. That and the older I get, the less I give a **** what people think. My advice to women who have had their guy-magnet parts chopped off? The boobs were going south anyway, did you really need them? I wouldn't want to have to stand in line for St. Peter at the pearly gates and have to tell him that my boobs killed me, because truly, you can live without them. Oh, at first, you'll be sinking in a giant pity party, but when you get your act together and stop defining yourself by your body parts, you'll be a much happier person in the long run.
Age: I was born in Alberta, Va., 66 years ago.
Family: My father was a sawyer at a saw mill. My mother was a homemaker. I have one sibling -- a brother two years younger. I met my husband, Carlton, at Saint Paul's College. We were married on Saint Paul's Campus in the Chapel 44 years ago. We have a 36 year-old son who is a graduate of William and Mary. He played professional soccer in Brazil and Chile. He played in the states for eight years. After 10 years of professional soccer, Khary retired after he met and married Susan, who is a native of Costa Rica. They were married in the Wren Chapel on the campus of William and Mary in 2006.
Career: In 1998, I retired from Fairfax County Public Schools. I was a Human Relations counselor and a teacher of Accounting and Information Systems. Prior to Fairfax County, I taught in the New York City School System and in Royal Oak, Mich.
Education: I received a Master's in Business Education from New York University and a program of specialized study equivalent to one academic year beyond the Master's Degree in Administration, Planning and Social Policy from Harvard University. Although I received certification in Secondary Administration, I decided that being a classroom teacher enabled me to have a greater impact on students learning.
What keeps you together? During my early childhood, I was very involved in the church. I was president of the junior choir; I attended Sunday school regularly and every summer Daily Vacation Bible School. My family was always a very vital part of my development. My grandparents lived next door to my elementary school, therefore I went their frequently for snacks after school. Sundays after church, we always ate together as a family.
When and how did you find out you had breast cancer? I was diagnosed in August 2007. After my routine breast imaging examination, I was called to return for a retake on the right breast. Initially, I thought it was just similar to the previous few years because I have had lumpy breasts. After the second examination, I received a call to come in for a consultation. Immediately, I suspected that the outcome was not good. At the moment I was told that I had cancer, I was not shocked, but I had lots of questions.
What was your first thought and action? My first concern was what is the suggestive course of action? How do I tell my son? My husband called me on the phone after I had my consultation on my way to the car. He asked "How did it go?" I paused and said I have cancer. It really took him by surprise. He had an appointment but waited until I arrived home. When I entered the door, he embraced me and we had a moment of emotions. It was more difficult to tell my son. His best friend from college lost his mother suddenly from a heart attack and I knew this would be difficult. When I told him he said, "Mom, how could you get cancer? You eat right, you take a handful of vitamins and you exercise." He immediately drove down from Alexandria to see for himself and to look at all the information from the doctor. Death was never a concern for me; my faith is very strong. I believe in the power of prayer. Throughout this entire ordeal, I was positive. When I was told that following surgery, I would have radiation five days for six weeks, I thought what an inconvenience.
What has been your treatment and where did you go? The most difficult experiences were the MRI and the preparation before the surgery. Before the selection of the surgeon, I researched the choices between Williamsburg and Richmond. Prior to the MRI and the surgery, we traveled to southwest France for 17 days. During this trip, I think Carlton and I bonded for a time of crisis and were able to enjoy the trip. Of course, I was able to enjoy more than he because I did allow myself to think about the breast surgery. I am not too sure about Carlton; I could tell the anticipation of fear. Dr. Terryl Times was an outstanding surgeon and I had all the confidence in him that I was going to be fine. I had a lumpectomy. I was very blessed in that the cancer was non-invasive and zero level. My radiation treatments were a very professional positive experience at Williamsburg Radiation Office Therapeutic Radiology with Dr. Chisam's staff. My oncologist, Dr. Kerbin, is with the Peninsula Cancer Institute. Two of my maternal aunts had breast cancer, as well. My mother's oldest sister died at 50 from breast cancer and her youngest sister was diagnosed two years ago. She had a lumpectomy, as well. She has been the person that I have talked with a regular basis. She continues to tell me I am going to be fine. My family and friends have been wonderful. I am in a support group in Governor's Land. The first Thursday of each month, we have lunch with speakers and sharing experiences. I also have a buddy who visited me and brought books and materials to help me along in my understanding cancer and what I need to do. I have been making contributions to the Susan Komen, Relay for Life and Kettering Sloan Cancer Center. Since I have been diagnosed with cancer, I have increased my involvement and donations.
How has breast cancer changed your lifestyle and your daily thinking? While my surgery and the radiation treatments were not negative experiences, it's only now that I feel more tired. I don't feel as if my live style has been altered. My activities seem to have increased. I have a greater desire to spend more time working with nonprofit organizations to help others, for example, Meals on Wheels and Hospice House Support of Williamsburg. I realize that there is a Supreme Being and that I have been very fortunate and blessed to be a survivor. Prayer is very powerful. I think that there is much more that I need to do to help people. We are both active at Bruton Parish Church.
Family: Husband, Allen; daughter Randi and her husband, Christian Kidd; daughter Maggie Harris, who will be 12 in November; and 4-week-old granddaughter Ellie Lynn Kidd. My mother, father and in-laws are all local from Williamsburg.
Pastimes: Boating, fishing, traveling and family time
Career: Owner/Vice President of A.B. Harris, Inc.
Education: Graduated Lafayette High School 1982 and Kee Business College in 1985
What keeps you together: Family and friends
When and how did you find out you had breast cancer? I was 42, and it was found during a routine mammogram; however, they had been watching a calcification for the previous two-and-a-half years. I was getting a mammo every six months for 18 months -- they then said it looks good -- we'll see you in a year. Guess what they found a year later!
What was your first thought and action? I actually had my youngest daughter with me. I had been called back for "more pictures" from the previous week's routine mammogram. I went in thinking -- no biggie. Cancer was nowhere in my thoughts! When they asked if they could take my daughter to the waiting room -- the sinking feeling set in. I was right then given an ultrasound and the tumor was pretty much confirmed that day. Biopsy was done a couple of days later; followed by an MRI and then another biopsy on the opposite breast (that one was fine). I had already planned "beach week" with my daughter and friends -- so I went and got the "confirmation" call while I was on vacation. I remember only crying in the shower!!! But I cried hard!!!
What has been your treatment and where did you go? Did you get a second opinion and why? The Sentara Imaging Pavilion was wonderful with scheduling everything! I was scheduled for a lumpectomy with sentinel node biopsy (I was kinda bummed about that because I really wanted them both gone) with Dr. Terryl Times. Once the results came back -- I had two positive nodes -- and the pathology report from the breast tissue showed not only was there invasive ductal carcinoma, but also lobular carcinoma in situ. It was then decided that I would have a double mastectomy along with axillary node removal. At the same time, tissue expanders would be implanted for future reconstruction. No additional nodes were positive! Before chemo, I had a "port" inserted. Surgery was followed by eight rounds (dose dense -- every two weeks) of chemo. I received my chemo from Dr. Mark Ellis at Peninsula Cancer Institute. I am now on Tamoxifen. I do not carry the BRCA gene. In June 2008, I started physical therapy for lymphedema I never got a second opinion. I trusted my doctors and loved the fact that they were "local" and I could receive my treatment locally, where my friends and family were. Plus -- my doctors all had great reputations and I felt fortunate to have them. I still feel that way! Love my docs!! I have since changed my OB/GYN doctor. I am seeing a doctor in Richmond (Virginia Commonwealth University Womens Center) who is a GYN oncologist -- I feel she understands my needs better and feel she is more qualified for future treatments I may need.
Breast reconstruction, type and why you made that choice? At surgery, tissue expanders were implanted. I had a couple of fills shortly thereafter but once chemo kicked in, my white cells bottomed out and I had to wait for further fills until after chemo was finished. Once my fills were complete, I had silicone implants and tattooed nipples. I chose implants over "flap" type surgery because it just seemed less invasive. As for me, I was done with surgery.
What have you not gotten from people you wish you had gotten? I honestly can say -- nothing! I have one of the best support teams anyone could ask for. Being a "hometown" girl does have its advantages!
What would you do differently in treatment or anything else if you found out today you had breast cancer? I can't think of anything. We tried to do everything possible the first time around.
How has breast cancer changed your lifestyle and your daily thinking? Unfortunately, the worst part is you do think of dying every day. They do say that gets better the further out you are. My last chemo was December 2007 -- not quite far enough out, I guess. I don't want to leave my family!! I can't help but think that often; however, I still live life as I did before -- to the fullest! I am definitely more involved in a mission -- to make everyone aware that it can happen to anyone! Beyond Boobs has given me that outlet.
What do you wish you had known before you diagnosis that you know now? The only thing I wish is that they would have biopsied the "calcification" upon detection. That could have eliminated a lot of this. I don't think there is anything else I really could have done differently. I was getting routine mammograms before I was 40 because of my dense breast tissue. I was not very good at self-exam; however, once my tumor was found, I still had a hard time feeling it for myself.
How did it impact your career? It really didn't. Being self employed, I was able to go in on my good days and do what needed to be done. My husband, Allen, ran the day-to-day business as always.
Personal life and relationships: I am very blessed. I live a great life, full of family times and lots of friends!! We travel often, spend time at the beach, time on our boat in Hatteras and love Florida. I love going to my daughter's sports games and cheering her on -- I can't imagine not being there for her!! I knew I loved my husband, Allen, but now I KNOW why!! I am a brand-new grandmother and am so proud of my daughter and my new granddaughter -- experiencing her birth was a thrill, and I can't wait to see her grow-up!!! My mom and I are very close, and I worry about her, too. Dad's great. My in-laws are the best. Brothers and sisters are close. Friends are the best.
How you view yourself? Blessed. Happy. Smart. I hope -- or so I am told -- that I have inspired others. (I just hope not in vain!)
Please feel to share anything else you would like. I'm glad I am able to share my story! I am a local person who knows a lot of people! I hope that my experience will touch them and "make them aware!!!"
Family: Husband, Greg; daughters Jennifer, Amanda. and Emily: and grandchildren Everett, Violet and Lucette.
Pastimes: Golf, reading and medical mission work. I also love my flowers.
Career: Nursing -- I was a school nurse and also worked in a doctor's office
What keeps you together: My faith and my family.
When and how did you find out you had breast cancer? Four years ago during a self-exam, I felt a lump in right breast.
What was your first thought and action? Well, I was going on a spring break vacation with my 20 year-old daughter to the islands, and I wanted that to be special for her, so I made an appointment the week I got back from the get-away.
What has been your treatment and where did you go? Did you get a second opinion and why? Lumpectomy and chemo (recommended because of the size of the lump), followed by radiation for seven weeks. I did not get a second opinion, because the doctors that I went to were my friends and I trusted that they were giving me the best treatment.
Breast reconstruction, type and why you made that choice? No need for me.
What have you not gotten from people you wish you had gotten? I was very lucky, as I had a wonderful husband who took early retirement so that he could tend to my needs. My daughters were wonderful and very attentive, and last but not least, my church family and friends were a great support for me. I would not be able to have peace of mind without my faith. Since I had my faith and family, all my needs were met.
What would you do differently in treatment or anything else if you found out today you had breast cancer? Well, to be completely honest; I would have gotten a mastectomy. I hate saying that when I have a pain in that breast, I say please don't come back and don't show up anywhere else. One has to realize you cannot second-guess your decisions.
How has breast cancer changed your lifestyle and your daily thinking? Well, I have always wanted to be in the mission field, so my pastor got me in touch with this group called Health Talents International. It is a wonderful group of 45 nurses, doctors, surgeons and anyone who can help. We go to Guatemala twice a year and provide free medical care to the Mayan population. I love it, and I felt it was necessary to give back. I plan on doing this the rest of my life.
What do you wish you had known before you diagnosis that you know now? I realize now that life is so precious and that every moment is so very important. Live as if it is your last, and never take anything for granted. The way you live impacts so many people.
How did it impact your career? Not at all.
Personal life and relationships? Stronger
How do you view yourself? I feel my life is worth living, and I hope and pray that I can help others
Online: National Breast Cancer Awareness Month at http://nbcam.org