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Since 2005, B4BC has been encouraging you to “share your story” as a means to connect with, inspire, and inform our community at large. Breast cancer has touched many of our lives…Tell us why It’s Personal for you by sending us an email with your story and a photo here.
August 14th, 2009. That date will be with me forever. It's not my birthday, or my anniversary, or the day I got my first puppy...it was the day I heard the "C" word directed at me. I was 27 years old and was just told that I had breast cancer.
Like many people on this site, I thought of myself as a "healthy" person by every definition of the word. I watched what I ate, I don't smoke, I was training for a marathon...but still I was struck by this terrible diagnosis. I spent many nights cursing my body for betraying me, but I didn't know just how strong I was.
I went through two surgeries. First a lumpectomy with sentinel node biopsy; then a lumpectomy revision (since the surgeons were unable to get a clear border on the first pass due to the fact that my cancer was stage 1 grade 3 DCIS making the tumor border "hazy") and a port placement in anticipation of chemotherapy. I underwent fertility treatments for egg harvesting so that I could hold on to the hope that some day I will be able to have children. Then I started the chemo...dreaded chemo. Since I was a pediatric oncology nurse for three years prior to my diagnosis I knew enough about chemo to be really terrified by it. I knew I was going to lose my hair, lose weight, get nauseated and not look forward to my favorite foods. What scared me most about chemo was not being able to do the things that made me "me". I decided that cancer was not going to take the things I loved away from me, so I continued to snowboard through it all...even throughout radiation. Some days I would wake up, look outside and fight with myself to get out of bed. The chemo just made me feel miserable...but after my first run of the day I would feel renewed; as if the cold air and sparkling snow forced a giant breathe of life into me. It was hard to be sad when all around me was so alive and beautiful.
During my treatment I was given the opportunity to participate in the B4BC ReTreat Yourself event at Beaver Creek, and I can honestly say that event changed how I look at life. I am forever indebted to those women I met and rode with. I am now cancer free, my hair has come back (darker and curlier), and I continue to snowboard, skate, run and bike. If there is one thing I can pass on to other women, it would be to follow your instinct. The moment I felt that lump in my left breast I knew it wasn't right...and I could have easily been patted on the head by my physician, reassured that I was much too young to have breast cancer, and sent on my way. If I hadn't followed that gut feeling that this wasn't just a fibrocystic lump, my story could have been much different.
As a cancer survivor and a nurse...I ask all women to be their own advocate; do self exams or have someone do them for you (you'd be surprised how well your husband or significant other knows your boobs). And if it doesn't seem right, it probably isn't.
Thank you to the B4BC community for continuing to give me the strength and encouragement to keep surviving and living life to the fullest!
James' Brush With Breast Cancer
Being a man, I would have never thought that one day I would need a mammogram. So you can imagine my shock at discovering a strange lump under my right nipple. I can remember the very moment, fifteen months ago, that something was wrong.
As I picked up my surfboard that day, it brushed across my right nipple and felt as if a razor blade had sliced it off. Although the pain continued to feel unimaginable, I wrote off the lump beneath my right nipple as scar tissue from all my years of serious surfing. After ignoring the lump for several months, my girlfriend convinced me to finally have it checked out. The doctor insisted that there was something there, and proceeded to order a mammogram. As I sat in the waiting room, surrounded by nearly a dozen women, I couldn't help but suddenly to feel deeply connected to their feelings, their thoughts, and their fears.
When it came time for the biopsy, the procedure went completely awry. The doctor couldn't stop the bleeding, but he also refused to give me pain medication. Because the tumor was so hard, the needle kept slipping out of it. They ultimately resorted to a puncture biopsy, a procedure that requires pain medication. Almost seven hours later, I was rushed to the emergency room -- the bleeding still hadn't stopped. It took a couple stitches and a fair amount of pain medication before I was released. While the experience was more than excruciating, I'm incredibly fortunate that the tumor came back benign and today I am in fact cancer free-- but from today forward I am forever changed. I have compassion, understanding and most of all I want to be a part of the movement. I want to raise awareness in whatever way I can be it surfing, traveling , showing up to a benefit or sitting next to someone who is walking through this disease.
Living a healthy and active lifestyle and spreading a positive message goes far beyond just my love for snowboarding. A few members in my family have struggled with cancer, one being my father, who passed away from lung cancer when I was 14. Having so many of my loved ones go down this disease stricken path, helped me realize that I needed to take care of my body now, in order for it to stay strong longer. Teaming up with B4BC has given me an opportunity to spread a positive message about staying active and living a healthy lifestyle. I love the outdoors and when I am not snowboarding, I am doing yoga, hiking, biking, running, rock climbing, and pairing that with a well- balanced diet. By treating my body good now, I hope I am giving it more longevity later.
The diagnosis of breast cancer is devastating news at any age. When I was diagnosed at 23 every part of me changed. Facing a life threatening illness before I ever graduated from college threw my life into overdrive. I knew that this disease affected thousands of others, yet it was hard for me to relate to the other women at my clinic because all of them were twice as old as I was. I found a strange independence through learning how to deal alone with a bald head or reassuring myself that my peers would not think any differently of me because of the physical changes I had been through. I could talk to family and friends during this strange time, but it was more like telling a story instead of talking to someone who really understood.
I discovered B4BC two years after my diagnosis. I picked up Tina’s book in a bookstore and opened it directly to the chapter about Monica’s story and the creation of B4BC. Since I live in Aspen I called B4BC to see if I could do anything when they were coming in town for the Winter XGames. Justine and I became fast friends and I enjoyed every minute spent with each person associated with the organization. Discovering B4BC has helped me to continue my path of healing by educating and helping other young adults. The mission is so simple, yet so essential to helping women and men understand the importance of being proactive about their health. It’s important for other young adults to be able to access an organization that can put you in direct contact with people who may also feel your pain. I have always told others that the surgery and chemo took the cancer away, but maintaining a positive attitude has helped me to continue to stay healthy physically and emotionally. There are many people that have taken me to the next level of healing. B4BC remains at the top of that list. My dedication to B4BC is beyond what it was 2 years ago and I am confident that soon there will be young survivors that won’t have to start their journey alone as I did.
To me, cancer is one of the most unfortunate afflictions in the world. It’s devastating and I wouldn’t wish it upon anybody. About two years ago, my aunt was diagnosed with breast cancer. It had a vast effect on my family. But when she stayed strong, pushed through and became a cancer survivor, we felt such overwhelming relief. I saw the strength that was needed to get through the hardship and it made me realize that I wanted to do everything I could to help prevent myself from cancer. When I was introduced to B4BC, I was very glad to join the team. Now, I can use my passion for skateboarding as a way to help myself stay healthy and active to help prevent cancer.
I still remember the day, over a year ago now, when I was diagnosed with breast cancer at age 31. It was the Monday of midterm’s week in my second year of business school. I was over $100,000 into debt to pay for school and then this cancer?
After two second opinions, including a trip to M.D. Anderson in Houston, I opted for a lumpectomy. Two days before Thanksgiving I had my surgery, coordinated so I could take the least amount of time off from classes and interviews. My surgery results were good, and chemo was imminent. Before chemo could begin, I completed egg harvesting (13 baby Katie eggs on ice). In order to finish chemotherapy before graduation, I had to start my first chemo cycle before I had the results of my Oncotype DX test. That ended being okay, though, because the test confirmed the need for chemo. I had a total of six chemo cycles and then 37 days of radiation. I just barely pulled it off, but the treatment was complete just three days before graduation, phew!
For some survivors, certain specific days are etched into their minds. I remember diagnosis day 10/16, surgery 11/21, first day of chemo 12/11, New Year’s Day with no stamina, my birthday, when chemo was cancelled by an ice storm 1/17, last day of radiation 5/15, etc. As a young adult, I also had unique concerns. How could I continue to finish my MBA? Would I need to cancel my semester abroad? Would my friends stand by me? Could I date, even when bald? How could I keep my parents from treating me like a baby, but also ask them to look after me? Could I still have my own babies? What about my job interviews? One of the hardest things was balancing my desire to continue leading my life and the need to treat my cancer.
I did need to cancel my semester abroad (chemo in another country seemed just too complicated, though I would have loved to be the bald girl who conquered Europe). As a result, I was determined to participate in a two-week intensive business course in China, which took place between my fifth and sixth chemo infusions. One of my favorite photos is of me, bald, at the top of the Great Wall of China. My oncology nurse loves that you can see my pollution-filtering mask hanging around my neck. (She and my oncologist had lobbied hard and convinced me to wear the mask, especially in Beijing.)
Chemo was a low point of treatment. My clothes no longer fit me; my stomach was bloated from the steroids. Some nights, as I cried in my bed, I wished I could just sleep the night through. My saviors were my friends and family who stuck strong by me, sometimes even too strong! Yes, at times, I needed to push back and ask for my space. But after having cancer, traveling, finishing my MBA, and exercising even when weak, I realized one of the most comforting things: I am not alone. While each of us is unique in our battle with cancer, I am ever-thankful of the companionship I have found amongst other cancer survivors.
My Essay: The “Benefits” of Cancer has taught me so many things, but these are the three that resound most:
I have always been a bit of a control freak, and often planned my life down to the last detail. When cancer struck, I was in the midst of interviewing for a new career and completing my MBA. Control was taken away from me by my diagnosis, and, for a while, I did not know what each day would bring, making it impossible to plan ahead. This has relieved a huge amount of stress in my day-to-day life. I no longer feel the need to plan every detail, and I am more accepting of the fact that I cannot control everything.
Before cancer I never really felt passion, not for a person, not for a cause. Now I am starting to understand what it means to feel passion: passion to learn more about cancer, passion to improve my own health and body, and passion to find ways to help other young adult cancer survivors. I hope to gain a better understanding of how my mental strength can be transformed into physical strength and wellness.
One of the best things I have gained from cancer is my network of new friends. In Austin, Texas, where I was in graduate school, I became a member of the Pink Ribbon Cowgirls. I met other young women who faced breast cancer, and we shared stories, advice and support. I learned even more about cancer, about how differently each person faces cancer, and how no two experiences are the same. When I moved to California, I met a similar group in the San Francisco Bay Area. I’ve also met casual friends and acquaintances in many places, from the bookstore to an airplane, who share their own stories with me. One time, while shopping, a random woman stopped me (I was bald at the time) and asked me about my story; we talked for a while. My friend came up to me later and said how annoying she thought that must have been. But it wasn’t. I cherish any opportunity I have to share my story with others and listen to what they may have to say. This past summer I was fortunate to be able to spend six days with the First Descents program, learning to white-water kayak with other young adult cancer survivors. Together, facing a challenge of a brand new sport, we found quick support in each other and the varied intensities of each other’s stories.
There are other benefits as well. My list grows longer all the time. Even so, I would never wish this upon anyone. It is a challenging battle and it one I am happy to be through.
I think Breast Cancer is personal for everyone now-a-days. As I stride into my 30’s I’d find myself hard-pressed to find someone who hasn’t been effected themselves in some way; whether a mammogram scare, a family member, friend or co-worker who survived or didn’t. My story seems to leave people wishing they didn’t ask so I often don’t tell the whole story.
When I was seven my mom was diagnosed with Breast Cancer; she was 45. I initially grew up living an “alternative lifestyle”, when I was born we didn’t have electricity or running water. My dad ran a co-op and my mom raised me in a home my parents built in rural upstate New York. My dad used to brag I never had an ear infection as a child as I was weaned on goat’s milk, brewer’s yeast and black strap molasses. Once I had kids myself I realized the reason I never had an ear infection is because I probably never went to the doctor. Early detection was not on my mom’s radar. She had previously had breast cysts and assumed the one on her left breast was a cyst as well. It wasn’t. It grew and festered until it burst through her skin resulting in what looked like to my seven year old eyes a raw and oozy puss filled volcano coming out of her upper breast. She changed bandages daily and went for radiation treatment. By this time we had moved to the nearby city of Rochester, NY where I went to school, my parents separated and my mom sought treatment locally and abroad.
Before my mom’s last trip to the Bahamas for treatment I remember screaming and crying for her not to go on this trip. Something bad was going to happen. I was certain and I was right. My mom came home in a wheel chair after contracting pneumonia and was bed ridden for the remainder of the winter. My mom chose to do at home hospice and we were truly blessed that our closest family friends and neighbors provided most of her care. I never had to sit in the nauseating stench of hospital rooms and be told to be quiet. My friends and I played while their moms cared for her and wondered what would become of me, a girl without a mother.
Friday April 7th, the day before my 9th Birthday my mom passed away at home. Sunday April 9th I had my 9th birthday party at our neighbors. That was the least painful celebration. I didn’t know at the time that losing your mom at such a young age meant you were embarrassed to tell your dad when you got your period for the first time. You went first time bra shopping alone while your dad explained the situation to the nice lady at the mall and then sat outside, coming in only to pay. I went prom dress shopping with a friend and a credit card. I went bridal dress shopping by myself. My mom missed the birth of her first grandchild and her second. I missed asking her, “How did you do this with no electricity or running water? What were you thinking?”
But losing my mom at such a young age was also a blessing. It made me, me. You have to be strong. You have to figure out how to do it on your own. You have to know what to say to your friend whose breast cancer has returned and now she is dying in the hospital with her 10 year old daughter playing in the waiting room. I suggested she write letters to her daughter for each of her major life milestones. Her daughter would then have a letter to open on her prom night, her wedding night and then birth of her first child. I would have really liked to have that. When I started dating my husband he said, “We’ve got to get you snowboarding”. So we did. He taught me and I fell in love with the whole experience; our time driving to the mountains together, being outside and the thrill of riding down a mountain together. I love knowing it’s a mountain day so french fries and hot chocolate totally count as lunch. I really love that all the girls I know who ride totally support each other and no one rags on anyone because they are last down or bit it off a rail. When I first heard about a B4BC event at our local mountain, I was so proud. Here were two things dear to my heart all rolled up into one great package. As B4BC grew, so did a close friend’s involvement in the organization. Of course I was happy to write a short piece about why it’s personal to me.
It became even more personal last year when the hospital called back after a mammogram screening caught something and asked me to come in for a biopsy follow up. “Really?” I thought, “Already?” I was expecting follow up appointments later in life but not at 30. The biopsy came back normal but I have more frequent screenings now. One of my favorite things about B4BC is their emphasis on early detection. Breast cancer effects women of all ages and all women should know how their breasts feel and what is normal. Could early detection have saved my mom’s life? I don’t know, but I do know it’s personal to me and I am proud to support B4BC.
April 29th is just another day for most people, however for me it is filled with crazy emotions. Two years ago my life and body changed forever when I had two cancerous tumors removed, both breasts, and 13 lymph nodes. I am grateful for each day that I get to walk on this earth, however, I will never be the same again. I mean it’s not like I’m wallowing in grief every minute of every day or anything, but cancer is ALWAYS with me and ALWAYS will be with me.
Here are a few things a cancer survivor wishes you knew:
* I didn’t grasp how difficult the treatment was while it was happening. After 5 surgeries in 11 months, I am only now able to realize the extent of the trauma that my body and mind went through
* My left armpit will always feel like someone is sticking me with a coat hanger
* I am constantly reminded of my double mastectomy every time I take a shower and cannot feel the water on my chest
* I cannot open jars or do pushups because I have no tissue or muscles left in my chest
* Just because you see me laughing and carrying on with my life as ‘normal’, doesn’t mean I’m not scared shitless that bad cels will start to grow again and I won’t get to see my kids graduate high school
* I like to hear success stories, not horror stories. Please don’t make a point to tell me about your nanny who had a double mastectomy at 42, only for the cancer to come back two years later and now she’s dead. It’s not that I don’t care about your nanny… I really really do… it’s just that this is my worst f-ing fear, and I simply don’t want to go there
* On the other hand, if a friend of ours is diagnosed and we’re talking about it in a group, don’t go silent and weird when you realize that I’m there. Honestly, I can take these conversations, and going silent makes me feel as though you think I have the plague and that you are all part of the non-cancer club who can freely talk about this, but I’m part of a cancer club. Which I’m painfully aware that I am, I just don’t need to be reminded
* Sometimes I’m so nervous when I go to my oncology appointments, I vomit in the bathroom of the waiting room. But I put on this brave face when you ask me how my appointment went as though it’s no big deal
* I no longer have control over my body and emotions. The chemicals that I take on a daily basis are totally running this ship… some days I barely feel them, and other days I don’t even know who this bat-shit-crazy person is. None of this is deliberate. Please don’t take it personally, and please forgive me. I’d love to not take the drugs, but you see, those same chemicals that sometimes turn me bat-shit-crazy, are the same chemicals that are supposed to keep me alive. Cool.
* When people say “You’re all good now right?”…. what I want to say is that I’m all good unless these f-ing cancer cels in my body decide to grow and take a tour of my body again. You see this is how it works for me now. If my cancer returns, it’s not because I did or didn’t do something… it’s because those are the cards I’ve been dealt
* My heart breaks when I tell Julian that I have a doctors appointment, and he looks at me with fear and asks me what’s wrong. You see, he is constantly afraid that cancer is going to sneak up on us from nowhere… like it did the first time… and there is nothing more heartbreaking than your little boy making you promise him that you are not going to die
* I wish people would stop using the term ‘cancer free’ because you are never truly ‘free’ from cancer. Back to an earlier point…I’m cancer free unless those f-ing cels decide to explore my body again
* I remind myself every day that I am not DYING of cancer, but LIVING with cancer, and I remind myself every day that I’d rather have this life than no life at all.
I was at my parents’ house in my old room on my old bed when I got the call. I was too nervous to hear the results of the biopsy to go back home alone so I stayed at my parents’ house and the radiologist called me the next morning and gave me the news over the phone. It was the day before my birthday!
Were you surprised? (Had you had a feeling something wasn’t right before you were diagnosed?)
I was not very surprised. My doctor had told me that the lump was something else over a year before my diagnosis. It started growing rapidly over a year after I originally got it checked out so I knew it was not normal at all. I also always had really irregular and painful periods so I knew something was out of whack relating to my hormones and the “normal” lump started growing shortly after I got back on birth control which was even more reason for me to believe that.
Metastatic ER+ (positive) breast cancer with mets (metastasis) to my bones and liver. I have a very serious type of cancer, but people can’t tell by looking at me. That is something that I really have been struggling with lately.
Current treatment plan?
Hormone therapy- three (painful!) shots in the butt and one (also painful!) shot in the arm once a month and a chemotherapy and hormone blocker pill every day.
Anything you have found for yourself that was not suggested by your doctors?
Yes! There are so many resources out there that doctors have limited or no knowledge of. I take CBD capsules everyday, completely changed my diet, incorporated a bunch of supplements, and started exercising way more frequently. I also had to do my own research on insurance and employment issues (how to take time off while getting some form of income and not losing my insurance, etc).
Do you see a naturopath?
No, I have not found one as of yet. I do see a great nutritionist at UCLA who works solely with cancer patients.
Do you use or have interest in medical marijuana or CBD’s?
Yes, marijuana definitely helps level out the side effects of my treatment. It helps me with my appetite, anxiety, pain, and insomnia. And I take CBD pills every day.
Any particular supplements that you take?
Vitamin D, turkey tail mushrooms, turmeric, blue-green algae, probiotics. I also make smoothies with plant protein powder, spirulina, and bee pollen mixed in.
How do you balance your treatments, family/friends, job and play?
Oh man- this has definitely been the roughest part of my whole cancer journey and I am still trying to figure it out. I have a full time job as an event coordinator that is very demanding, but I love it. However, I just can’t keep up with it like I used to, at least for now, so I will be transitioning into a slightly more relaxed position with the same organization soon. I have had to miss a lot of work, and some people in the office understand and some don’t, but I have had to drill it into my head that there are laws in place to protect me and people have fought very hard for these laws and rights. Incorporating more of what I love (travel, the outdoors, snowboarding, the ocean, hanging with my dog, music, cooking) into my life is one of my main goals now and a huge part of the healing process. My friends and family have mostly kept me sane. Certain relationships have definitely shifted- some for the worse and some for the better. I have had a couple people step out of my life who I never thought would, but I have also had people step up who I wasn’t even close to before all of this. Dating is also a whole different ballgame now. Most guys my age get scared away, but I’m still hopeful. One of my good friends told me in the beginning that with all of the bad, there will also be good- which has held true throughout my experience.
Yoga or meditation?
Both! I did yoga occasionally before my diagnosis, but am now doing it at least three times a week and it has changed my life. My treatment makes my whole body hurt and I feel like I have the bones and joints of a 90 year old woman thanks to medically induced menopause, but yoga has helped alleviate those symptoms. I don’t even want to know how I would feel right now if I wasn’t consistently practicing yoga. I am still able to snowboard and surf and I think it is largely in part thanks to yoga. Meditation is really hard for me but something I am working on and hope to master one day.
Daily ritual or mantra or both?
Remember to BREATHE! And to always look out for number one….me