Recently I was interviewed by Fox Small Business Center as a spotlight interview in recognition as a company that is making a difference in women being treated for breast cancer. We like to think of our company as one that cares and it’s always nice to be recognized for those efforts. Read more here…
Teppi Jacobsen is a blogger for Chicagonow.com. In honor of breast cancer awareness month, she is highlighting the stories of women affected by breast cancer. Here is her highlight about my story.
“Susan Beausang comes from three generations of breast cancer survivors. She also suffers from Alopecia Areata, or total hair loss. She has two degrees; one in Fashion Design and one Political Science after her career path deviated to the world of financial markets.
After coming to terms with her hair loss, Susan put her fashion design education to work and designed her own solution, a head scarf that unites the worlds of fashion and medical head wear. With strong personal connections to many women who have lost their hair to either Alopecia or cancer treatment, Susan knew she had to share her solution. The BeaubeauR, “Beautiful Scarves for Beautiful Heads,” was born and Susan founded her business, 4Women.com, both to make them available to women and girls worldwide and to advocate for a deeper understanding of the emotional impacts of medical hair loss in society at large and among the medical professionals that serve women and girls.
Today, Susan Beausang resides with her spouse and labradoodle in Sarasota, FL. With five grown sons spread out across the country, she dedicates herself full-time to women in need of emotional support, an advocate, or a fashionable head scarf. Her website is www.4women.com”
Written by Susan Beausang
Before there was Alopecia, there was breast cancer.
As a little girl, I knew that there was something unnatural about my grandmother’s upper body. It was never talked about in front of me or my siblings, but having had a super-radical mastectomy, her disfigurement was hard to hide.
Having undergone an aggressive breast cancer treatment that removed her breast tissue, lymph nodes, chest wall muscles and part of her rib cage, doctors were able to extend my grandmother’s life. Then it was my maternal aunt, still in her 30’s and diagnosed with breast cancer. She underwent the same radical procedure, resulting in the same disfiguration. Reconstruction was not an option in those days. Ultimately, both my aunt and grandmother had recurrences and eventually died from the disease.
It didn’t end there. At the age of 62, my mother was diagnosed with breast cancer. This was the 1980’s. Mom’s breast cancer diagnosis was not openly discussed in front of us, but we knew. She had a modified radical mastectomy without reconstruction.
Then came my younger sister Mary, diagnosed at the young age of 29. Then Paula at age 45, then Mary again, this time in the other breast. Needless to say, I was convinced that with me, it was simply a question of when, not if. I was desperate to do something other than wait for that day.
I convinced my 7 siblings to enter a study at the University of Pennsylvania Hospital, one of the first to test for genetic mutations that predispose us to breast and ovarian cancer. We learned that 5 of us (4 sisters and 1 brother) had the BRCA2 mutation, which translates into an estimated 85 percent chance of developing breast cancer over a lifetime. Those were odds I just couldn’t live with.
I opted to have both my breasts and ovaries prophylactically removed, as did my one sister who had not yet been diagnosed with breast cancer. I wish that were the end to our cancer story, but it seems cheating, living and beating cancer is in our genes.
In between, there is Alopecia Areata. Just 10 months after my prophylactic surgeries, my hair started falling out at a shocking pace. In just 3 short months, I was bald, but not just bald. My eyebrows were gone. My eyelashes were gone. All of my body hair was gone. I cheated cancer, but you wouldn’t know it by looking at me. All my efforts to avoid cancer and the subsequent side effects (hair loss) were for naught.
Alopecia knocked me down for a while, and I’ll forever be a passenger on the Alopecia roller coaster, but once I designed the beaubeau®, life as a woman with hair loss improved greatly.
So whether you’ve come to 4Women.com raw with the emotions that come with Alopecia areata, female pattern hair loss, or unexplained hair loss, or you’ve come to 4Women.com with the fear and pain that comes with facing, fighting and beating cancer (and losing your hair to boot), I understand what you are going through. If I can validate your feelings and help you to feel more self-confident, pretty, stylish, or joyful, then all that’s come before in my life has value.
Susan M. Beausang
President and Founder of 4women.com
Each month 4Women.com chooses a beaudiva of the Month. Meet Betsy - Our October Beaudiva of the Month!
I have pretty unique, extremely light blonde hair. It became clear to me early on that there was no chance I’d find a wig that came anywhere close to my actual hair color - so I started look for alternatives. I was excited when I discovered the beaubeaus because they’re honestly - pretty- not just “good enough” or “not ugly” or “ok if you have cancer” - but actually cute. I’m a school leader responsible for 500 teenagers every day and I take pride in dressing well to set a good example. I’ve actually enjoyed the challenge of coordinating my school outfits with my beaubeaus and the kids love them too. I get lots of compliments. You know your style is on point when a 15 year old girls take notice.
The experience of totally unexpected cancer diagnosis at age 36 and all that comes with that has been challenging and just plain weird. The hair loss had the potential to be pretty awful for me…But it just hasn’t been so bad. I think the beaubeaus have made a big difference because I don’t feel like I look sick, therefore people don’t react awkwardly to me. I can just be myself.
I guess the other part of my story I’d like to tell is that I finally figured out how to respond to all the lovely, sincere offers to help. I didn’t really need anyone to make me dinner or drive me anywhere. BUT I did need more beaubeau options. I gathered the courage and made a wish list for my friends. Fifteen beaubeaus later - now I have options for every day.
Teppi Jacobsen is a mother of 2 daughters, 25 and 23. She works as a women’s accessories representative and has been married for 27 years. She has been writing for chicagonow.com for 2.5 years. She tested positive for BRCA1 genetic mutation and is enduring her second round of breast cancer, the first being 10 years ago. This is her second time losing her hair. This October she will do a guest post series from women who have or have tested for the BRCA mutation.
For the past six weeks I have found it very difficult to write. Actually, it’s just been very difficult to write about subjects other than the fact that I have been dealing with CANCER. I have thought about other subjects, written short drafts but I just haven’t been able to focus. So, rather than force myself to write about something else, I am going to write about my hair. Yes, a whole blog will be devoted to my hair. Because in about four weeks, it will have all fallen out
Write only about hair you say? HOW BORING. IT’S ONLY HAIR, it will grow back. If you know me do not ever say that to my face. Because it is not only hair. And if you really believe that, I want you to shave your head the day I do. Which will be the day I wake up with a huge chunk of hair on my pillow. The day I will run my fingers through my hair and a handful will just come out. You see, for those that don’t know me, I’ve already been there once. I’ve already done that.
I have twelve days until I start the poison drip. Because that’s what it is. Yep, it will save my life. And in the process I will become bald and sick. So strange that right now after I’ve had my surgery that I feel great. Now I have to feel and look sick to get healthy. I do believe that everyone that experiences this has a right to some self pity. A right to feel sorry for themselves. Right now, I do.
The first time I went through chemo I did not know what to expect. Now I KNOW what to expect. On the upside I only (I say only like it’s a huge deal) have to endure 4 treatments v 16. This is a huge plus. So rather than having absolutely not a stitch of hair on my entire body (yeah, there too) for nearly a year, I may have some growth by the end of 2013. Yippee!! But I have to lose it and that is making me sad, angry, crazy and depressed.
You see, my hair has always been a symbol of who I am. As a nerdy child in grammar school, my mom always insisted that I wear my hair in a short pixie cut. Basically, I always looked like a boy (totally flat chested). As I got older, I finally let my hair grow. And grow. And grow. No longer dictated by my mom’s strange desire to keep it short, I just let it go free.
Over time, I did cut it and went from short to long to short. But ten years ago, just before I had my first bout with cancer I was starting to grow it out. Then BAM. Chemo followed by baldness followed by years of trying to grow it out again. When it first came back, it was quite similar to a brillo pad; thick and course, curly and a strange ashy tone. I kept is short despite wishing for long hair again. In 2008, I decided it was time to go for it, let it grow long again. I felt superstitious but I wanted my hair back.
So since then I have let it grow ( I wanted long hair once more before I was deemed “too old”). I’ve gone through the pain in the ass of evening out layers and the waiting. Waiting for it to get to my shoulders. Waiting for it to hit my back. Now it’s halfway down my back. And in four weeks it will be gone. And I am not dealing with this well. Bad hair days are bad enough. No hair days just plain suck.
On the upside, I sprung for a killer wig. A “virgin” human hair wig. No, not a virgin girl with great hair, hair that has never been color treated silly. But I don’t sleep in the wig. So, when I wake up in the morning and catch my reflection, I don’t recognize the person staring back at me. I don’t want to be her. I’ll want to be the woman with the hard earned, well fought for head of long hair.
Just wait until I start writing about my boobs.
September is Alopecia Areata Awareness Month - it is also the 13th year of the onset of my struggle with this disease. Alopecia is a relatively unknown disease that remains mostly misunderstood. One in 100 people in this world are affected by this disease in varying degrees. The “awareness” calendar is filled with causes and diseases - October and Breast Cancer being the most prominent but Alopecia Areata does not get the recognition of other diseases or the research funding. It is not a household word and it continues to carry a stigma to all those affected. Certainly if you are flying Delta Airlines this month, you will not be offered blue drinks - but next month you see pink drinks being passed around for Breast Cancer Awareness Month.
What can we do to change this? Here are some simple rules:
1. Do not assume that a someone that has lost their hair is being treated for cancer.
2. If you MUST approach a bald person and ask about their hair loss, please take the time to listen and learn when they explain their disease
3. Take that knowledge and share it with others so that they may be educated as well.
If we all do our part to eradicate the misunderstanding about this disease, think how much easier the lives of aloepecians would be! We can all do our part to educate the public about alopecia, one head at a time.
Once again, cold caps (caps worn during chemotherapy to prevent hair loss) are making headlines. These caps have been used in other countries with some success which has helped spread awareness about cold cap therapy. Chemotherapy drugs act by killing cancer cells that divide rapidly (such as hair follicles) which leads to hair loss. For some women, it’s one of the most dreaded side effect, even causing some women to by pass treatment in order to keep their hair. I know to some, this may sound like excessive vanity but more and more, our medical professionals are beginning to recognize the impact hair loss has on a women’s self esteem.
These caps work by reducing blood flow to the scalp with near-freezing temperatures which makes it more difficult for chemotherapy drugs to reach the scalp and harm hair follicles. Before an FDA approval is possible, US researchers need to put this experimental hair-preserving treatment to a rigorous test.
Cold cap therapy may become a part of chemotherapy treatment. Hair loss due to cancer fighting drugs could very well be eliminated. How do you feel about cold caps? Would you be willing to endure the caps during your treatment in order to preserve your hair?
Susan M. Beausang
Angelina Jolie shocked the world with her announcement that several months ago, she had undergone prophylactic mastectomies after learning that she carried the BRCA1 gene mutation. Jolie’s mother died from ovarian cancer in her mid 50’s which undoubtedly led to Jolie being tested herself. My 3 generations of breast cancer history sent me for genetic testing more than a decade ago as well. After testing positive for BRCA2, I elected to have prophylactic mastectomies and an oophorectomy. I became a “pre-vivor”, a term often referred to those that take surgical measures to prevent cancer from occurring.
Now that this news is being discussed everywhere from tabloids to medical professionals I am wondering about the aftermath of such a public announcement by such a visual personality. Certainly her disclosure has sparked a new interest in breast cancer risk and prevention - and that is a good thing - but I can’t help but wonder if her actions will be interpreted by women who are not in the very specific risk category leading them to feel an over exaggerated sense of personal risk and consequently make decisions that may not be in their own best interest. For those that do carry the mutation, this public decision may also challenge them to take action. In my own family this news has started an email chain discussion about other risks associated with our BRCA2 gene.
Removing healthy breast tissue is both a medical and psychological decision. Surgery does not come without risk. I carefully weighed my own personal risk and made a bold decision to remove my healthy breast tissue. It was the right decision for me. Jolie’s announcement seems to be educating the public about the BRCA1 and BRCA2 genes and the subsequent risks associated with it. A downside to this awareness is that genetic testing can cost more than $4,000 and if not always covered by insurance. The upside is that in 1998 a law was enacted that requires insurance companies to pay for breast reconstruction for mastectomies.
This aggressive approach to breast cancer prevention has been around for awhile but there is no question that a person which such star power as Jolie brings awareness to a new level. Facing your risks and taking control is empowering and it’s my hope that this news does increase awareness but not panic. Personally I thank Jolie for going public with her bold decision. I feel I will be explaining my genes and my treatment decisions less often and may not have to answer why I call myself a “Pre-vivor”.
Susan M. Beausang
I’ve been an avid runner most of my adult life. It’s only recently that my knees have said “no more” but it hasn’t lessened my desire or my keen interest in watching races such as the Boston Marathon. I’ve been that runner crossing the finish line, exhausted, exuberant and energized by a throng of strangers cheering me on. I’ve also been at many finish lines watching runners accomplish their dream of running a marathon. The atmosphere of these events is electrifying and something to remember. Never once did I even imagine that evil would be lurking in the crowd to inflict pain, suffering, maiming and even death on the on lookers - until last Monday. That’s when two horribly evil men changed lives forever.
When I read and watch horrific stories such as this, I often wonder if people are born evil or if evil develops or if they are predisposed to evil. I’m sure this is a debate for the ages and for which there probably does not exist a scientific answer but I do know that what occurred in Boston is pure evil.
My heart goes out to the victims and their families and my praise goes out to all first responders and the resiliency of the residents of Boston and surrounding areas. Yes, this act was evil but I am willing to bet the 118th running of the Boston Marathon will show solidarity and true meaning to the newly coined phrase “BOSTON Stands AS One.”
As a mutation carrier of the BRCA2 gene I am tuned into the case going before the US Supreme Court this week as to whether human genes can be patented. Just repeating those words seems awkward and science fiction like. After all, I hold two US Patents on my scarf design. I can wrap my head (no pun intended) around that notion but to think a company can patent my genes? The awarding of patents on human genes is not a new phenomenon, the US Patent and Trademark Office has been awarding patents on human genes for almost 30 years but the case that is up for debate is very specific to Myriad Genetic Inc’s patents on two genes linked to increased risk of breast and ovarian cancer (BRCA1 and BRCA2).
Trying to understand the complexity of the case has the Supreme Court justices breaking down the argument to laymen terms by discussing items like chocolate chip cookies as an example. Justice Sonia Sotomayor was quoted as saying “if a new way was found to extract the ingredients of a cookie, a company still wouldn’t be able to patent flour, eggs and salt.” She also went on to say that “in isolation, it (gene) has no value, it’s just nature sitting there”. Myriad definitely gets kudos for isolating the gene and it’s use but perhaps not the gene itself.
At the crux of the matter is that Myriad is trying to patent an isolated portion of the DNA with “markedly different chemical structure” from DNA within the body. Opponents fear that If Myriad is able to patent the BRCA1 and BRCA2 gene it may slow down valuable research for life saving measures for those diagnosed with breast cancer. Myriad argues that without the cash flow that comes from these patents, that necessary scientific discoveries to combat diseases won’t happen. Then there is the fear that companies like Myriad may one day decide that this isn’t profitable enough for them and abandon that line of work.
Myriad currently owns the only BRCA gene test. They developed the BRCA analysis that looks for mutations on the breast cancer predisposition gene (BRCA). I’ve been told that having this mutation increases my risks of breast, ovarian and other cancers. This knowledge and my family history of 3 generations of breast cancer, caused me to take a proactive stance with prophylactic surgery. I’ve not looked back on those decisions and am thankful for that knowledge.
The Supreme Court will rule on this by the end of the summer. Surely after this case is debated our Supreme Court justices will feel that they have just completed a crash course in biology! There is no doubt that I will be following this case with special interest. How do other BRCA mutation carriers feel about this case?
Wedding planning (my son) has kept me blog silent for a few months- but I’m back with a vengeance. I’ve been playing the Alopecia game for 12 years. The disease has toyed and teased with my emotions during that time with several re-growths, coincidentally for two of my boys weddings! It was only natural that I thought I would have hair for this wedding as well. Not the case. Several months before the wedding the tell tale bald spots began to surface. I tired to keep them under control with steroid injections but when the last one appeared right smack in the front of my head, I knew Alopecia was going to win this time.
What is the big deal? I have an arsenal of beautiful beaubeau scarves to wear and even a wig or two. The big deal was that I was being held hostage by the Noggin Gnomes - those little critters that creep into your mind and convince you that no matter what you wear you won’t be yourself. For me, they surface occasionally and unexpectedly. They eat away at my self esteem and bring me right back to the early days of my diagnosis.
Yeah, once again I was temporarily held hostage by Alopecia, but now that the wedding is behind me, I am free to be me! Bye bye Noggin Gnomes….Until next time.