This post was written by one of the women we serve:
I was 19 years old and life couldn’t get any better. I was going into my junior year in college as a teaching major, had a wonderful boyfriend, and a new family who loved me. I was two weeks away from my 20th birthday, and I was so excited to be done with my teenage years. But a routine yearly exam with my doctor made my life come to a stand still… or so it felt. On May 28, 2008, I was diagnosed with Stage IIIA breast cancer.
From my doctor, I went to the hospital where an ultrasound was performed. The following day I was sent to a bigger hospital for a biopsy. (Living in more than small town USA you have to go away for anything other than ordinary medical care.) Six days later I was laying on an operating table in the middle of a lumpectomy. Over the course of the next 18 months I would have four more lumpectomies. May 28, 2008 changed me as a person and as a human– to me there is a very big difference. I thought, wait… this can’t be happening to me. I’m an athlete and a healthy, happy, young woman.
I remained numb for about 3 months. Through chemotherapy, and 2 more lumpectomies I refused to take on the role of cancer victim. I was so angry at life and at everyone around me because I was in a world all my own; a world no one around me could understand or wanted to understand. August came and I went back to college. I have remained in school through the entire 18 months of my battle. I am now 21 years old.
This past summer, two days before I turned 21, I found out the cancer had metastasized to my ovaries- a very rare location for this cancer to spread to. Since then, I have gone through six months of targeted therapy with strict diets and exercise routines. I was told on November 19, 2009 that my cancer had gone into remission. I went last week for my first PET scan, and the cancer was back with a vengeance. I already have two new tumors. I skipped the depressed state and went straight to angry. This quickly turned to constructive anger and I became proactive in getting treatment.
I am scheduled for a complete hysterectomy on Friday, February 12th. I am very scared. The mastectomy has to wait until school is out. I am currently in my student teaching and am set to graduate in May 2010. The hysterectomy will leave some sense of peace in me I hope. I am determined to be back into remission by graduation.
There are so many people who have made this journey possible. They added humor and joy to each day. They carried me when I thought tomorrow would never come. I lost many people through my diagnosis, but found others who truly are the best of friends. Don’t ever give up because when you see only one set of footprints, because it means you’re being carried when you no longer have the strength.
Can you identify with this story? How did your diagnosis change your life? Share your thoughts below or on our Facebook page.
Happy Friday! We’ve put together a list of interesting breast cancer-related blogs to check out…enjoy!
“Choosing to live breast-free also reflects my belief that our culture is far too obsessed with youth and beauty…” Read more
“I am choosing to take my life back from cancer and the negative emotions that come with it…” Read more
“I am amazed at how different my life may end up looking now that I am cancer-free and my hair is growing back…” Read more
We are amazed by these women! So strong and positive…we plan to honor many more like them at our 8th Annual Yoga Unites for Living Beyond Breast Cancer (YU4LBBC) on Sunday, May 16. We’ve set a goal of raising $200,000 for the nearly 200,000 women that will be diagnosed with breast cancer this year. It doesn’t matter where you live–everyone can get involved by forming a fundraising team. Check out the excerpt from the YU4LBBC blog below and learn more about the breast cancer survivors we’re raising money for.
“After getting the clean results of my mammogram for the 7th year in a row, I felt euphoric. And I wanted to express my gratitude in a tangible way…” Read more
This entry was written by Jeanne Egan, a breast cancer survivor:
I was diagnosed with breast cancer at age forty-four, when my children were just seven and four. It was 2007 and we had recently moved from Washington, DC to a suburb of Philadelphia. I was a newcomer in my community; I could literally count the number of women who I would have considered to be a friend on one hand. Needless to say, I was overwhelmed. How would I manage? My parents didn’t live nearby and they were burnt out on children with cancer. They had just been through my younger brother’s battle with colorectal cancer. Of course there was my husband, but he had a very demanding job and was traveling quite frequently. I knew, from the moment I was diagnosed, that he would not be available to provide all the help I would need.
To whom would I turn? I am not the kind of person who is comfortable asking for help from others. I have always been “in control” of my life. But the idea of trying to take care of my children, managing a household and going through treatment was daunting. I quickly realized my only option was to ask my girlfriends, both old and new for help. In spite of my resistence to do so, I called my closest and dearest girlfriends one by one and told them of my diagnosis. Then I sent an e-mail to all of my friends, new acquaintances and family explaining my plan.
My e-mail was straightforward about my diagnosis and surgery. I explained that I would welcome any and all help. Quickly, quietly and with great stealth, a small “army” was formed. Sara was “Mess Sergeant,” coordinating all of our meals. Katie was designated “Chief Correspondent of the Breast Cancer Campaign,” taking responsibility for all correspondence and setting up a Care Page. Barbara was appointed “Lieutenant of Fun,’” a role she took very seriously as she organized lunches and events for me to attend with my girlfriends on the weeks I was off of chemo.
As I went through my surgery and prepared for chemotherapy, I noticed that I was slowly being enveloped by a virtual “web of caring.” Each women gave of herself so I could rest, plan and focus on my health. Reinforcements came each day. Whether it was talking to me about my treatment options, taking my children home for play dates, making a meal or taking me to doctor’s appointment, my girlfriends always had my back.
My oldest and dearest friends moved in to our spare bedroom, each leaving their families for a week to take care of mine. They shuttled my children to and from school, they painted my toenails and they did my laundry ( I know for a fact that my friend Laurie doesn’t even do her own laundry, so you can imagine my surprise when she brought a pile of clean clothes into the room where I was infirmed). At night, they fed my children the meals that had been provided and read them bedtime stories. I also enlisted the help of three Villanova University students right after my diagnosis. They were all roommates and basically spent every afternoon at our house as the year wore on, becoming “big sisters” to my children as the year wore on. They played many a board game and numerous hours of red light green light in our basement after school.
Every one of the women who helped me during these months shaped the decisions I made throughout my breast cancer journey. Whether it was which type of surgery to choose what type of wig to buy or what foods to eat during chemo, they would inevitably provide me with an answer. Because of their caring and consistent support I felt a responsibility to get well and try to stay well.
Jeanne and her children
Want to learn more about Jeanne? Check out her blog!
If you need to talk to another survivor, call our Survivors’ Helpline at (888) 753-5222. Visit lbbc.org to learn more about the programs and services we provide. And of course, continue the conversation & network with others on our Facebook Page.
This entry was written by one of our volunteers, Phyllis Allen. Phyllis is a volunteer for our Survivors’ Helpline.
When I first started volunteering at LBBC, I became aware of an alarming statistic. When African-American women are diagnosed with breast cancer, they have a 38-40% higher mortality rate. If you add in the fact that triple negative breast canceris more difficult to treat and more prevalent among African-American women (39% are diagnosed), the survival rates start to frighten women of color. As an African-American breast cancer survivor, all of the stats above concern me.
When I was diagnosed with breast cancer, I decided to learn everything I could about the disease so I could talk to my medical team about my treatment and my chances of survival. There is still the perception in the African-American community that being diagnosed with breast cancer is a death sentence. Women are afraid of losing their breasts and worry about the side effects of chemotherapy, I.E., losing one’s hair. Some women are just afraid of any surgery, period. All of this leads to some African-American women delaying seeking diagnostic tests and treatment. As a result, African American women are less likely to be diagnosed at an early stage of breast cancer. Once we seek treatment at a later stage of the disease, it’s harder to get a positive outcome, and thus feeds into the perpetuation that a diagnosis of breast cancer is a death sentence.
My grandmother was diagnosed with breast cancer in January and passed away the following February. Granted this happened in the late 1950s, but a number of families have relatives who have waited too long to seek treatment. I took it upon myself to discuss my diagnosis and treatment with friends, family and colleagues so that we all could learn about breast cancer and hopefully, would be less fearful about the outcome. Women of color must be encouraged to be more proactive in preventing a late breast cancer diagnosis. This means conducting breast self-examinations every month and having regular mammograms depending on your age and family medical history. While women complain that a mammogram is painful, it’s a lot easier to deal with that discomfort instead of having to tell your family that you have breast cancer.
African-American women must be able to afford health insurance that encourages preventative care. As women we tend to put our needs last, but if we’re sick we can’t attend to the needs of our loved ones. It also means providing information to hospitals, health clinics, medical care and social service professionals who come in contact with African-American women who are at risk for and/or have been diagnosed with breast cancer. LBBC provides a lot of literaturethat people can read and understand so that they can have meaningful discussions with their health care team.
One of the more distressing things I have learned as a volunteer for LBBC is that a number of African-American women tell me that they refuse thetreatment plan recommended by their medical teams. The main complaint is usually that they want a more holistic treatment of their breast cancer. I always ask the women if they have a medical degree and, if they don’t have one, I insist that they speak to their medical team about their concerns. More and more physicians are listening to their patients’ requests for a treatment that is not so toxic, but it must be discussed in terms of each woman’s case. No two women are alike in every respect. I strongly believe that knowledge of treatment options is key to the woman committing to finishing the treatment plan that she and the medical team decide is best.
Bottom line: if there is mutual respect between medical care professionals and the women they serve, I think it could make a dent in the higher mortality rate of African-American women diagnosed with breast cancer.
This entry was written by Lynne Goldstein, a photographer & breast cancer survivor:
When I tell people that I have had five different cancers (not including a brain tumor which was benign, yet surprisingly inconvenient), I think I perform a service for them. Maybe for a second they feel better about themselves after hearing my history.
As for me, I’m still struggling. I guess I always will. Sometimes when it occurs to me that I actually have had cancer multiple times, I stop and think, “That can’t be. I must be mistaken.” Even after six years of being cancer-free, the shock still hits me – and this is after years of psychotherapy … Twice a week. Every week. For six years. (Not including national holidays.)
My lovely therapist has told me that I am, indeed, moving on. So I believe him. After all, he is the one with the degree hanging in his office.
“Channel your creativity,” he tells me. So I have decided to fall back on my photography, my passion. For years I have been taking pictures of animals, flowers, architecture, fluffy clouds, even family members (though they keep confiscating my camera). I never thought about putting photography and cancer together. It seemed too much of a cliché.
But I was wrong. Though telling the story about my illnesses through the camera lens has been painful, exposing, maddening, emotional, and, finally, ‘almost, yet not-quite-accepting,’ it has also provided a way for me to create a visual for my feelings. The result, and for want of a better title, is my ‘cancer series.’ It begins with chaos, transforms to anger, and finally goes from a blackness to a more hopeful palette. However, it remains, and will remain, unended.
When you look at a few of the photos in the series that I have included below, you may see different things. The shapes may be recognizable and yet a little off-center, not true to nature. You can focus on what seems to be the subject in the photo. Or you can search for what might be represented in the negative spaces in order to gain a different perspective. No matter what you see, I hope that they evoke some personal response. Or even just an aesthetic one. Regardless of your experience, I am just happy to share them with you.
Whatever your state of mind, whatever your history, whatever your situation…
To see more of Lynne’s work, please visit her official website. If you’re interested in purchasing a copy of the photos, please email Lynne or leave a comment below.
What do you think of Lynne’s work? What emotions are conveyed through the images? How do you express your struggle with breast cancer (or any disease for that matter)?
If I could do it all over again, (not that I would!) here are some things I wish I had known before going through breast cancer treatment. I hope these are helpful.
• Side effects won’t last.
There were times when I was hit hard by the unpleasant side effects, and it seemed as if I would feel that way forever. But I didn’t. To the extent that I was able, I distracted myself by trying to focus on something outside: TV, reading, visiting.
• Accept help from people who want to help.
In some ways I tend to be an independent person. My mother told me the first words I spoke were “Do it myself!” So during treatment I tended to tell people I was doing OK when they offered to help. But then I learned that, when I did let others do something for me, it made them feel great and it did help me, too!
• Give yourself time – if you need to rest, rest.
The surgery, chemotherapy, radiation, going to see doctors, getting tests – all of that took a lot out of me! I tried to keep up with everything I had planned, but guess what? It was too much. I needed to plan for time to rest.
• Be nice to the people who are taking care of you.
What a great group of people they have giving treatment. I imagine that some people who endure weeks of radiation and months of chemotherapy can get very grumpy with the nurses, technicians and other staff who administer the treatment. Early on I realized that these incredible people were helping to save my life. I was so grateful to them and let them know it often. Looking back on it, I realize they probably would have been just as nice to me even if I had been grumpy. Common sense tells me that their time with me was a lot more pleasant because I made the effort to be pleasant to them and to show my appreciation of how well they were taking care of me.
• You have to be your own “case manager.”
It turns out that the process of getting treatment for breast cancer can get very complicated. There’s so much going on and someone has to keep track of all of it. I learned that lesson about halfway through chemotherapy. A clerical person called me to change an appointment because my oncologist had to go out of town that day. During the phone conversation I realized that I could probably go get treatment even if he was not there. So I asked. And yes, I kept the appointment. Someone else saw me that day and I did not have to postpone or interrupt my treatment schedule.
• Treatment is easier when you know what to expect.
Going at the beginning of radiation and chemotherapy was strange and different. After a few times it got more familiar. I now recommend that people facing treatment ask others who have had it what their experience was like. Remember the old saying: “Be Prepared!”
• Plan for something pleasant to do after treatment and after the side effects diminish.
When I realized I had to get radiation every single day for more than 6 weeks, it seemed like a big chunk of my valuable time. I resented it. But then I decided to find something to enjoy. After each treatment I took a little walk and explored the area around the hospital. I made such interesting discoveries! With chemotherapy, I had to wait for the side effects to lessen before I could consider a treat. But I managed to find something pleasant each cycle. Once I figured that out, it gave me something to look forward to and helped me tolerate the yucky times.
If you have any questions about treatment or need to talk to another breast cancer survivor, call our Survivors’ Helpline at (888) 753-5222. Trained volunteers, who are all breast cancer survivors, are waiting to talk to you. Take advantage of this resource.
Do you have any other tips or suggestions to add for women going through treatment? Leave a comment below!
This entry was written by Gina Peracchia, who’s formed a fundraising team for Yoga Unites in honor of her mother:
I know of many people affected by breast cancer in some way. I’ve known friends’ mothers, grandmothers, etc. who were diagnosed with the disease, but never in my life did I think it would hit so close to home.
My mom was diagnosed with breast cancer on January 16, 2009. It took awhile for that fact to sink in, and myself, my dad and brother were constantly going through the motions. My mom was physically and mentally suffering, and none of us knew what to do. I believe she felt alone throughout much of the beginning of her diagnosis, but when she found Living Beyond Breast Cancer (LBBC), everything changed.
LBBC has become a huge part of my mom’s life. This organization undoubtedly gave her a new perspective on life and how to live for tomorrow. After hearing her talk week after week about LBBC, and learning that she started volunteering for them, I wanted to do something to help as well. She told me about Yoga Unites for Living Beyond Breast Cancer, and how she was planning on participating in the event this spring. Because I knew she’d be busy preparing for my wedding in April, I offered to help form a team for her. A few weeks ago, the 2nd Base Brigade was born.
Yoga is an amazing form of exercise, especially for our mental well-being. Besides being a great way to fundraise, I think it’s the perfect way to bring family and friends together, along with breast cancer survivors, to show them how much they mean to us. We want them with us for a long time to come, and Yoga Unites is a special way of helping to make that possible. I am proud to be a part of the 2nd Base Brigade, and I know my mom appreciates all of the support from her family and friends who will be participating in the event as well. My mom is looking forward to Yoga Unites, and I am happy to say that she will be participating as a one-year breast cancer survivor.
Everything I do that involves LBBC is not only for my mom, but for others living with breast cancer. Yes, it feels good volunteering and participating in an event for a good cause, but it’s different when you’ve seen firsthand what this disease can do to a person. Their will to live can sometimes fade, but LBBC helped my mom’s will to live grow. I’m hoping others will find that peace on May 16th as they climb the stairs of the Philadelphia Art Museum and engage in a little one on one time with their inner, vibrant spirit.
This entry was written by Erin Pianko, a breast cancer survivor who attended last year’s Annual Conference for Young Women Affected by Breast Cancer:
Erin is on the left
I was diagnosed with breast cancer when I should have been worrying about planning a wedding and starting a family. Suddenly, I found myself swimming in an ocean with hungry cancer sharks. As well as being desperate for comfort and guidance, I also looked for humor and the glimpse of hope that my life would somehow return to normal. It didn’t take me long to learn of organizations like Living Beyond Breast Cancer and the Young Survivor Coalition. For many women, it takes time to warm up to the idea of attending a survivor conference. But, hungry for information, I applied for a scholarship to attend the 9th annual Young Survivor’s Conference in Dallas. It was only four weeks after my diagnosis.
This disease takes an aspect of control out of your life and my way of dealing with this loss was to attend the conference to meet other survivors, share my story, learn as much as I could and get involved.
Starting the Journey
The day I left for the conference I was excited and nervous. I put my wig on and went to the airport, not knowing what to expect.
When you wear wigs you start to spot them a mile away. I learned this when someone approached me at the airport asking if I was attending the conference in Dallas.
It would appear that my journey had begun before I even boarded the plane! The survivors I met at the airport and while I was at the conference have been so important to me in this last year. You can not put a price on that kind of support.
9th Annual Conference for Young Women Affected by Breast Cancer
Giving Back
The organizations represented at the conference gave me ideas of how to get involved to help end this disease. I have felt an obligation to give back since research done in the past is currently keeping me alive. Six months after the conference I participated in the Susan G. Komen 3-Day Walk for the Cure and raised over $11,000. Participating in this event was one of the most rewarding experiences of my life.
At last year’s conference, I felt the need to embrace ‘being in the club’, the club that none of us ever wanted to join. Sure it is ‘pink’…but think about what this ‘pink’ stands for: …
a united front to live life to the fullest and end this disease forever.
I have a different focus in attending the 10th Annual Conference for Young Women Affected by Breast Cancer this year. My goal is to seek out women who have recently been diagnosed and be their cheerleader. I want them to have hope that they will get through treatment and be healthy again–words I needed to hear a year ago. Whether you have just been diagnosed or are a twenty-five year survivor, think about attending the conference this year!
Learn more or register for the 10th Annual Conference for Young Women Affected by Breast Cancer.
It really isn’t funny, you know. It’s serious. The whole thing. Life-threatening. So, no laughing. Cut it out. Be serious. Just wipe that smile off of your face.
Except we can’t, can we? Not always. But be honest: aren’t there times when you look around and think, “I’m in the middle of a Mel Brooks movie except no one knows but me!”
Now this is the important message. YOU MUST LAUGH.
Photo credit: Laurie Beck Peterson
You’ve already cried way too much. It’s time to find the laughter. Sometimes the laughter stays hidden for a really long time and sometimes it shows up at the strangest time.
When I was first diagnosed with breast cancer (22 years ago), my husband and I were sitting in my breast surgeon’s office, receiving the bad news. A few days before we had learned the results of the biopsy, but this was the “what do we do now” appointment. The tone was quite somber, of course. Before the doctor outlined my choices he asked how my general health had been. I told him I felt fine, but that I had recently had a head cold. And then the moment arrived! A slow smile spread across my face, the first one since “this” began. And I said, with a big smile on my face: “But I guess it went to my chest!”
Ok, maybe not the funniest line ever, but that was the moment I knew I could be ok. I knew if I could find a joke (feeble as it might have been), then I could find more reasons to smile and to laugh. And I did. I even found a doctor who understands my sense of humor and who makes me laugh. This past summer I found out I had a 2nd recurrence, a 2nd time with bone mets. The first had been 18 years ago, so this really knocked me down. And I stayed down for a while. But by the time we got to my wonderful, funny oncologist (a funny oncologist??) the stress lifted and we laughed through the entire appointment. We laughed at cancer, at the absurdity of all of this…we even laughed at our laughter. And you know what? It felt really good.
Sometimes I have to get out of my head, out of the wondering, worrying, wishing. Treatment pulls me back to those difficult places: I start to resent the familiar smells, the look of the waiting rooms, even the nurse’s nail polish. I hate belonging where I don’t want to be. So I make a conscious effort to look for something that will at least make me smile. I watch old funny movies (may I recommend “The Producers”-the old one and any Marx Brothers movie), I talk to my funny friends (they must promise to be funny and not quiet and “sensitive”).
And occasionally in the waiting area at the doctor’s office, I find a kindred spirit, someone who is able to pull me away from the awful reality of this for a few minutes. Have you had these moments? Care to share them? We can all use a good laugh.
“If breast cancer teaches us anything, it teaches us how to be our self. “
That may sound strange, since many feel like anything BUT themselves after a diagnosis of breast cancer. But Kathy-Ellen makes the point that we have to truly be ourselves to live through breast cancer, or cancer of any kind. See what else she has to say here…
Another blogger, Kerry Osborne keeps a list of what she learned in 2009, the year she was diagnosed with breast cancer. She says,
“Life is short. Enjoy every moment. Every day you wake up feeling good and can do what you enjoy is a privilege.”
Living Beyond Breast Cancer (LBBC) is a national, nonprofit organization located outside Philadelphia. Our mission is to empower all women affected by breast cancer to live as long as possible with the best quality of life. Want to learn more or get involved? Give us a call at (610) 645-4567 or email us at mail@lbbc.org.
