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| Teri Smeija |
This month, I asked my friend, Teri Smieja, if she would agree to write a guest blog. In a previous blog post, I wrote about the topic of prophylactic mastectomy and the role breast reconstruction can play in the difficult decisions some women must make, including those women found to carry the BRCA mutation. Teri was one such woman. She has become an outspoken advocate for education, research, and action for breast cancer survivors and pre-vivors, especially those carrying a mutation on the BRCA gene. I was fortunate to meet her online, several years ago, on the breastcancer.org discussion boards, under the topic of Breast Reconstruction, on the "NOLA in September" thread. A couple of weeks ago, Teri was in Minnesota to visit her son, in his final semester at the U of M. It was great to get together with her and also discuss the exciting news of the recent publication of a book she co-authored! But I'll let her tell you about that herself:
It was the year 2009, soon after the birth of my youngest son
that my world was turned topsy-turvy when I learned that the ovarian cancer one
of my aunts had passed away from likely had the BRCA mutation. My mother, who I
was estranged from at the time, sent me a piece of paper with her test results
on it, showing that the ovarian cancer she had been battling was a result of
testing positive for the BRCA1 mutation.
I had a lot to learn, and at the time, I was still living in
Ridgecrest, CA. Out in the middle of the desert, I felt like a lone coyote with
no one to guide me in the right direction. When I went to see my ob/gyn for my
post-having-a-baby checkup, I showed him my mother’s test results and asked if
I could be tested too. I was his first patient ever requesting genetic testing,
and we sort of fumbled our way through the process, and we didn’t do it quite
right. How could we have? There is no real standard operating procedure yet. It
took two tests and fifty-two days for me to get my BRCA results back. I knew in
my heart that I would have a deleterious mutation, like my mother, and her
deceased sister, my Aunt Benita and my mom’s other sister, my Aunt Lita.
Knowing the answer in my heart, didn’t really prepare me for the
onslaught of the journey in front of me when I saw my own test results and got
confirmation, in black and white, that I too had the BRCA1 mutation.
The anguishing journey that followed is what led me to start my
blog, Teri’s Blip in the Universe, one of the very first successful BRCA blogs,
as I openly made my way through the terrible choices I faced.
I met with genetic counselors at Cedars Sinai in Beverly Hills,
CA and learned that it wasn’t just my incredibly high breast and ovarian cancer
risk I had to worry about. There are several other cancers associated with BRCA
mutations, but these two are the most common cancers. Not only did I have to
worry about the up to eighty-seven percent life-time breast cancer
risk, and a forty-four percent chance of ovarian cancer, the risk of recurrence
is unusually high in those that have a mutation on their BRCA gene. Cancer is
relentless in people like me, and while one case of breast cancer MAY be put
into remission (remember, there is NO CURE for breast or ovarian cancer)
through chemo or radiation, the case of recurrent and metastatic cancers is
through the roof high.
According to current recommendations by genetic experts, the best way to
survive breast and ovarian cancer is to fight it pro-actively by having a
prophylactic bilateral mastectomy and a hysterectomy and oopherectomy. In
layman’s terms that means the best chance for survival that women like myself
have, is to undergo a double mastectomy and to have our ovaries and fallopian
tubes removed while those organs and tissue are still healthy. We have to
strike out at the cancer, before the cancer strikes out at us. Oh, if only it
were as simple as eating more broccoli or doing extra yoga. Unfortunately at
this time, our choices are few and far between.
I blogged extensively through my emotionally charged journey.
For me to have to make that sort of choice, and having to make it out in the
middle of the Mojave desert, where no other known mutants dwelled was
incredibly difficult. I was scared. I was terrified! I had one son in his last
years of high school and one son who was just a few months old while I was
trying to navigate this world along with my husband, and neither one of us had
any real prior knowledge of what any of it truly meant.
(Eve here. I came across the following video post by Teri, just before her first prophylactic surgery. The poem she reads is "Invictus" - Latin for 'unconquered" - by William Ernest Henley. After that, her narrative continues.)
(Eve here. I came across the following video post by Teri, just before her first prophylactic surgery. The poem she reads is "Invictus" - Latin for 'unconquered" - by William Ernest Henley. After that, her narrative continues.)
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| Teri and Dr. Herman |
The success of my blog, and the "BRCA Sisterhood", a Facebook group that I co-created with my Canadian friend and BRCA2 mutant, Karen Lazavoritz, and being featured in an issue of Wired magazine after the executive editor came across my blog, gave me the confidence to agree to write this book along with Dr. Jonathan D. Herman, a BRCA advocate like myself (he’s been in many Public Service Announcements and was even on an episode of The Doctors), a practicing ob/gyn who lives in New York and travels all over the country giving BRCA lectures to other doctors.
It took us a few years, I went through a few more surgeries and
some nearly deadly complications, and we changed our focus more than once, but
in the end we decided to write our book in the style we used, compiling letters
and quotes from Previvors and survivors that we’d both met along the way. The
letters in our book are full of advice, gripes, kudos, stories and experiences
of patients written to their doctors, in a way that will be able to help
doctors understand the importance of genetic testing, and to help those in the
medical community truly understand what sorts of things a person living with a
BRCA mutation go through. Men can have this mutation as well, but their
implications are not always as obvious. Many doctors still think that men can’t
get breast cancer, or that women can’t get the BRCA mutation from their
father’s side of the family. Many doctors are discouraging genetic testing (for
various reasons) or missing obvious red flags in their patient’s family history
forms.
Our hope with this book is to literally change the way the
medical community treats all of their patients. This book has the ability to
save lives. Not theoretically, but it actually has the power
within it to save lives.
I’m incredibly proud of how far I’ve come. I remember being six
years old and chasing the boys around the playground in elementary school, long
ago. I made my way through high school, barely. I went through life, lacking
focus and thinking more about myself and my son, and our own needs, wants and
desires than I did about anyone else’s. Not that I didn’t care about other
people, I just didn’t realize I had any ability to do anything about the
injustices in the world. I suppose I felt removed from a lot of it, and didn’t
understand that ONE person CAN make a difference in the world. And if I did
believe that, I certainly never thought that ONE person could be ME.
Two and a half years ago my husband was offered a job at the
Pentagon in Washington, DC, and here we are now, living happily. I’m not the
same person I was, all those years ago. Learning of my BRCA mutation changed
me. It turned me into a caring, giving, loving philanthropist type of person
who my family can be proud of, and who I can be proud of. I genuinely care
about the world, and know that there are things in it that can and should be
changed, and to simply complain about what’s wrong, without at least trying to
do something about it, is not who I am anymore.
Accomplishments:
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BRCA Sisterhood on Facebook, started in November 2009 and today
it is the biggest BRCA support group on Facebook with over 2000 members and
growing daily. As this is a closed group, only women with the BRCA mutation are
allowed to join (I recently facilitated the start of a companion group on
Facebook called BRCA Brotherhood, moderated by Dave Bushman). I can be emailed
directly on facebook for admittance upon approval. Teri.Smieja@facebook.com
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Featured in Wired magazine February 2010 http://www.wired.com/magazine/2010/01/ff_decisiontree/2/ or
pdf file: http://www.wired.com/images/press/pdf/decisiontree.pdf
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Featured in a chapter on genetic testing in the book The
Decision Tree by Thomas Goetz (author is also the editor of Wired),
February 2009. http://www.amazon.com/Decision-Tree-Control-Personalized-Medicine/dp/1605297291/ref=sr_1_1?ie=UTF8&s=books&qid=1264196543&sr=8-1
·
Spoke on the radio station IROC 102.7, July 2010 as
FORCE’s (Facing our Risk of Cancer Empowered) social network coordinator. Link
to that audio file: http://myblip.files.wordpress.com/2010/07/1-teri-smieja.mp3
·
Featured in a chapter of a book titled Pink Moon Lovelies:
Empowering Stories of Survival, by Nicki Durlester, April 2013 http://www.amazon.com/s/ref=nb_sb_ss_i_2_9?url=search-alias%3Daps&field-keywords=pink+moon+lovelies&sprefix=pink+moon%2Caps%2C550
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Co-author of the newly released book, Letters to Doctors; Letters to Doctors: Patients Educating Medical
Professionals through Practical True Life Experiences. The BRCA Mutation and Hereditary
Breast and Ovarian Cancer Syndrome Edition, by Dr. Jonathan D. Herman, and Teri
Smieja. Available for purchase through amazon, Barnes and Nobles,
and a bookstore near you will be able to order it for you.
