Thursday, October 16, 2014

B.R.A. Day Big Reveal

"The BRAve Faces of Breast Cancer"
I was hanging our 2014 bra art in preparation for the next day's big reveal at the Breast Reconstruction Awareness Day event here in Central Minnesota. This year the venue was the atrium and lobby of the plastic surgery clinic that has sponsored the awareness day for the past three years. One of the gals from the clinic, Laurie, and I spread the 40-some bras on empty chairs in the waiting room, so we could survey the scene and decide how best to group them on the walls.

As the self-described curators of the bra art collection (we now have over 100 bras), we take the installation of the exhibit very seriously, bordering on obsessive-compulsive, actually. And so we found ourselves running up against the end of the lunch hour, with patients beginning to filter in for their afternoon appointments.

"Groovy Woman"
We always get a big charge out of the responses to the bras. They elicit plenty of smiles and laughter and even conversation between total strangers—which doesn’t often happen here in Minnesota, with so many of our forefathers and foremothers hailing from Northern Europe, which tends to make us rather reserved people.

As it happened, two of the women in the waiting room were there to see the doctor about DIEP flap breast reconstruction. Unfortunately they didn’t meet each other, since one was called into an exam room before the other arrived. The bras had inspired the first gal to offer to create one next year (when her chemo would be over and she’d have some energy)—and out of stained glass, no less. Can’t wait to see that one!

"Take Time to Touch the Ones You Love"

The bras also broke the ice between a second and third woman, as one revealed to the other her own plans for breast reconstruction. She’d had double mastectomies ten years prior and had finally decided it was time to replace the girls. Yet there was no hiding that she was nervous about her decision. It absolutely killed me to be overhearing this conversation, yet not have time to reassure her and offer a look-see in the bathroom. But Laurie had to be getting back to work, and we still had half the bras to hang.

The event went great – we had a good turn-out and awesome food. Also a panel of speakers, including the DIEP doc, a nurse navigator for breast cancer patients, a gal who’d had implant reconstruction, and a woman who’d tested positive for the BRCA 1 gene and opted for propylactic surgery and DIEP flap recon (in the course of her prophylactic oophorectomy, they found she had stage 0 ovarian cancer – boy, did she make the right decision). Then we awarded prizes for the most artistic bra, the most inspirational bra and the people’s choice. In addition to education, there were tears, laughter, and the great sense of comradery we breast cancer survivors and previvors always share.
"Triple B: Buttons, Bows and Breasts"

I’m hoping that part of next year’s program can include some private viewings—not of the bra art, but of the reconstruction art, if you know what I mean. Studies show that the vast majority of women facing breast reconstruction want to see actual results before making decisions. I really hoped that could be part of the program this year, but the powers-that-be nixed the idea. Maybe next year I can convince them—no matter how reserved we Nordic types may be. I guess unless someone’s been through breast cancer themselves, they can’t quite understand the need for the big reveal.

"Get Screened"
"Looking for a Cure"
"Stitching Together Survivors"
"C Goddess"
"Just Bead It"
"Save ZE BReAsts"
"The Chosen One"
"Country Strong"

Tuesday, June 24, 2014

Using Humor to Cope with Cancer

This month I'm honored to welcome multi-talented and world famous entertainer, singer/songwriter, stand-up comedienne, one-woman-show writer and performer, master limericist, self-described mutant BRCA positive previvor, educator, and Huffington Post blogger Eva Moon!

I believe I first became acquainted with Eva via some limericks she posted on I've never been a big connoisseur of that poetry form, but I'd never read Moon's before. I was seriously impressed. I think comedians are some of the most intelligent people there are.

Eva is also an alum of the same breast reconstruction clinic in New Orleans that I am, so we meet-up in cyberspace from time to time. Maybe sometime we'll meet-up at that NOLA showboat I wrote about back in that April 2013 blog post! Anyway, Eva is one funny and intelligent lady and has even released a DVD of her one-woman comedy show, "The Mutant Diaries: Unzipping My Genes: A Musical About Telling Cancer to Take a Hike." You gotta love her! I can attest that the show is great, and it left me laughing, crying, and more impressed than ever. 

Eva has packed this blog post so full of helpful advice, I am definitely going to try applying it immediately to my own life. So without further ado: Heeeeeeeres Eva!

Nine Steps to Keeping your Sense of Humor in a Disaster
by Eva Moon
Excerpted from Eva Moon's workshop on "Using Humor to Cope" at the FORCE Conference on Hereditary Breast and Ovarian Cancer in Philadelphia, June 2014.
If it weren't for the brief respite we give the world with our foolishness, the world would see mass suicide in numbers that compare favorably with the death rate of lemmings." -- Groucho Marx

We've all heard that "laughter is the best medicine" and studies support it. But what do you do if your sense of humor abandons you in times of trouble?
Here are nine steps to keeping your sense of humor when the going gets rough:
  1. Seek out things that make you laugh. Everyone has a unique sense of humor and you're the world's foremost expert on what you find funny. Pay attention to what makes you laugh and look for patterns. The more you understand your own sense of humor the better you'll be able to access it when you need it. Start a collection that suits your taste so it'll be there for you when you need it.
  2. Seek out people who make you laugh. Laughter is contagious. Simply reading or watching humor is passive -- it's something you're taking in but not taking part in. We are social animals -- the benefits multiply when we share. Think about a time when you were out with friends. One tells an amusing anecdote and it reminds you of one you want to share and pretty soon everyone is in hysterics, right? Start a list of topics that will spark this kind of sharing. Here are a few suggestions to get you started: Biggest cooking disaster. Worst date ever. Funny pet stories. Most embarrassing moment.
  3. Avoid wet blankets. Wet blankets are great for putting out fires, but they don't keep you warm. Who are the wet blankets in your life? One, some people in your life are just plain downers. You may not be able to avoid them altogether if they're relatives, co-workers or people who depend on you, but minimize your contact with them as much as you can. Two, some people just can't resist sharing every horror story related to your situation. Don't let them! If someone launches into one, stop them immediately and ask if the story has a happy ending. If it doesn't, tell them you'll pass. Finally, you can be your own worst enemy. Of course you need to keep yourself informed enough to make smart decisions, but if reading or talking about it is becoming compulsive, take a break! Disaster won't strike if you stop for 24 hours.
  4. Look for the funny around you in everyday life. Incidental humor - the things you notice around you as you're going about everyday life are like humor super vitamins. Noticing them changes the way your brain works. There are two main reasons people miss the funny stuff. One, they're not in the habit of looking and two, they're so caught up in their own heads that they go through the day on autopilot. The trick is to get OUT of your head. That's where play comes in. Play helps you let go of the past and the future for a little while and experience the present moment. It doesn't have to be complicated. Try this: Next time you're in the grocery store, turn the all boxes of pineapple-upside-down cake mix upside down on the shelf. It's a stupid little prank but it will leave you feeling like a rebel.
  5. It's not a funny bone -- it's a funny muscle. Exercise it! Finding humor in everyday life might seem hard at first, but it gets easier and more automatic with practice. Don't wait until you're in crisis. How far do you think you'd get in the Tour de France if you didn't start learning to ride a bike until race day? If I asked you to find five funny things a day, would that be hard? Maybe. You'd probably forget and suddenly it would be 10 p.m. and you'd only found one one thing. But what if I said I'd pay you $100 for each funny thing you noticed? Do you think it would get easier? Yes. Because you'd be actively looking. Even if you have to force it at first, set up reminders and do it. Eventually it becomes a habit.
    From there to here and here to there, funny things are everywhere. -- Dr. Seuss
  6. Fake it 'til you make it. In a recent study people were asked to look at cartoons while repeating different vowel sounds. People who said the long "e" sound rated the cartoons funnier than the people who said the long "o" sound. Their bodies fooled their brains: The long E sound activates the muscles associated with smiling and that actually made the cartoons seem funnier. You don't have to be in the mood to start using your sense of humor. Sometimes it's an act of faith. Just start and it will catch up. I do this with sex too.
  7. Change your point of view. Sometimes you're too close to a situation to see what's funny in it. There's a technique called "reframing" where you try to step back from a personal situation and look at it as if it were a movie, in the past or happening to someone else. There's a great story about a woman who'd had a double mastectomy. One day when she went out and bent over to pick up the paper, one of her prosthetics fell out. Before she could pick it up, the dog got it and ran off. She started chasing after the dog yelling, "bring back my breast!" At some point she realized how ridiculous it was and ended up doubled over with laughter. It was a turning point in her recovery.
    Comedy is tragedy plus time. -- Carol Burnett
    What are the funniest anecdotes from your own life? I bet most of them were disasters at the time. But now, in hindsight, they're hilarious. Remember a disastrous period in your past. Did you go on to feel better later? The same is true for things happening right now: Some day, it will be in the past. Make this your mantra in times of stress: "I'm going to laugh about this some day." Maybe you will and maybe you won't. But I bet there is some small part of any disaster that will be amusing to share in the future. And if you're going to laugh some day, why wait? Don't feel guilty for laughing in times of tragedy. It's a sign of your resilience and will to survive. And it IS good medicine.
  8. Face your triggers. We all have things we're sensitive about. But you may have a trigger that makes you feel uncontrollably defensive. Do you ever wonder how some people can just come up with smart comebacks to insensitive comments? Do you believe you could never manage a cool reply like that? Planning and practicing alone or with a trusted friend can defuse some of the emotion and help you feel more in control. Whatever it is that really gets to you, at a quiet time, think about your triggering situation. Brainstorm responses. Google "witty comebacks to insensitive questions about X" and find a few that work for you. Practice them out loud to yourself and role play with a friend. Then, when you encounter it in real life, you'll be ready.
  9. Be gentle with yourself. I would never suggest that you need to be a clown all the time or you're doomed. Or you're doing something wrong if you go on a week-long crying jag. Experiencing and accepting grief is part of healing too. Laughter won't make your problems go away, but neither will tears. All I want is for you to have the tools to find a little relief.
A note to friends and caregivers: You can't force someone to laugh. Take your cues from your loved one, but don't be afraid to try some gentle humor and see how it goes. I was shaken out of a spell of grief by a silly limerick a friend shared.

Tuesday, May 13, 2014

This Video Could Save Your Nipple!

I am so excited to have stumbled upon this! The following video is the best illustration -- easily accessible to the general public -- that I’ve seen of advances made in breast reconstruction, short of visiting photo galleries of top notch reconstructive surgeons (which the general public is unlikely to do) or happening upon the rare photo in the general media of women willing to bare all for society’s collective edification (I only know of one women who had the chutzpah to do that).

Now I’ll shut up, hoping if I write no more, it will make you more likely to please watch this (while I continue writing up for next month what I was working on for this month). Nothing scary in this 8-minute video, only the beauty of women and modern medical techniques. Please share with the women you know! Thank you!

Thursday, April 3, 2014

What's All the Flipple About the Nipple? (Part One of a Trilogy)

When I was diagnosed with breast cancer back in 2006, I remember asking my surgeon here in Minnesota if there was a way they could just remove the insides of my breast, while saving the outside, and then re-stuff it with something else. I guess I was thinking implant, since I didn't know that you could use your fat to rebuild your breast. I wince as I remember actually comparing it to a purse. Even to me, that sounded pretty dumb and desperate, and I figured he thought so, too. He looked at me like I was one bulb short in the attic and replied with one word, "No." Only later did I find out that my purse metaphor wasn't that far-off, nor was my question stupid. In fact, turns out the surgeon was the ignorant party in that conversation.

Someday I'll blog about skin-sparing mastectomies. But today I feel compelled to zoom in on a particular sub-area of the skin envelope (or purse)--and the part I was truly the most worried about when I asked my surgeon that question. This part of the breast can often be spared, as well, but it's not talked about a lot, even though it isn't nearly the fringe procedure it used to be a few short years ago. And again, as with so many issues involving reconstruction, a big part of the problem has been so many surgeons lacking training in newer breast recon techniques. So they decide not to inform their patients about alternatives they, themselves, don't happen to know how to do.

Maybe a woman not being informed that her nipple(s) could be spared doesn't rate up there in seriousness with other issues--such as docs recommending breast recon procedures best relegated to the surgical dark ages. But still, nipples are super important. I know lots of women who have suffered additional surgeries and procedures in the nipple quest to replace those lost to breast cancer--and it turns out they're not that easy to reproduce. I don't know exactly why this small, circular bulls-eye of pigmented skin emanates such strong juju in the context of the rest of the breast, but it's not difficult to imagine why. I'd guess part of it is mammalian hard-wiring.

After my lumpectomy (that was later followed by a mastectomy), what I feared most about removing my bandages was that my nipple would be gone. No one told me whether that was part of the "lump" they removed in the lumpectomy. And I felt embarrassed to ask the question, "Excuse me, nurse, do you know if I still have a nipple on this breast?" I was so happy to later find it there, in the middle of my bruised and battered breast, that I cried.

In fairness, part of the reason sparing the nipple is not universal practice yet is because there have been no large, longitudinal studies--as there have been in comparing regular to skin-sparing mastectomies--to determine the risk of nipples harboring or being potential incubators for breast cancer cells. Because of this, some women, even if offered the alternative of nipple-sparing mastectomies, decline. I've heard many women who've undergone prophylactic mastectomy due to their BRCA status, for example--which makes their risk of getting breast cancer sky high--say that if they are already going to such lengths to avoid cancer, they sure aren't going to take any unnecessary chances just to save their nipples.

But there is still a significant amount of research that strongly indicates nipple-sparing mastectomies are a safe alternative under certain circumstances, at least. And those circumstances may be expanding. That research has led to a greater understanding of where cancer cells seem to start-up and hang-out in the breast and the structural make-up of the nipples themselves. Since breast cancer often begins and dwells within milk ducts, and milk ducts reside in nipples, it's not a leap that nipples could give birth to breast cancer. Yet the cancer literature does not report any breast cancers originating in the nipple, so if one did, it would be a pretty freak occurrence. Instead, studies of actual nipples and breasts removed in mastectomies show that cancer starts out in very tiny ducts or the lobes that produce milk. But the ducts in the nipple are significantly larger, and the very few lobes in that area are found only where the nipple meets underlying breast tissue, nowhere near the nipple peak.

There is so much fascinating information about nipples that this warrants at least a nipple blog trilogy. So I'm going to close Part One with the list of factors surgeons now use to determine if a woman is a candidate for a nipple-sparing mastectomy. But I will be writing more about some new research--and there have been some relatively recent, exciting findings--so stay tuned!

1. At least two centimeters should separate the cancer from the nipple. Some docs think four.

2. Cancer tumors in the breast should be less than three to four centimeters, whether invasive or non-invasive.

3. No lymph node involvement.

4. Cancer should not be present in more than one quadrant of the breast.

Tuesday, February 25, 2014

"Winged Victory" or "The Birth of Venus: Women Restored After Breast Cancer"

I would love to curate an art show of an unusual sort. One that would travel to various museums and venues around the country. I have some pretty good ideas for titles for the exhibit. In my mind’s eye, I see a sign mounted under plexiglass on the clean, white entrance wall to a large exhibit room. Maybe at the Minneapolis Art Institute. Some cities might not have a venue with such panache. But I would relent and let it be shown in other spaces, too, as long as the lighting was good and the location classy.

The art I’m thinking of deserves to be showcased. And the public needs to see it. The artists who work in this medium are extremely rare. Even if you count those who—to be honest—are not very skilled. But those unskilled artists would not be part of this exhibit. The art form is so little understood and so little seen that most of the population has virtually no standard by which to judge what’s good and what’s not; who are the masters and who are the charlatans. The ignorance must end. This exhibit could help.

Many people are impacted by the successes and failures of these artists. Their work adorns the most intimate space in which women live. Women see it displayed every day of their lives, so they deserve to know what they’re buying. They deserve to know what they can aspire to have. They deserve to know what excellence is and when “good enough” is really good or really enough. Because when we women settle, we'll only get more of the same—mediocrity at best, disaster at worst. We deserve to know enough to demand better—better training, better techniques, and—okay, you guessed it—better surgeons.

The art of breast reconstruction has advanced far beyond what most women know. Is every result a masterpiece? No. To mix metaphors, even Babe Ruth only batted 340. But let’s get past words and let some pictures do the talking. 

The Birth of Venus by Sandro Botticelli
These pictures would be very different from those that make the rounds of the Internet every so often—the single photos, or links to photo galleries, or notices about traveling exhibits. These wouldn’t be the same as the ones used for raising awareness of the malevolence of breast cancer and our need for a cure. Not like those showing how inexorably breast cancer hunts down all women—not even sparing those in the bloom of youth, some with babes at their sides. These would be exhibited not to shock or to scare, but to soothe. To educate. To empower.

To begin, we need the artists—those who sculpt in flesh, as well as those who can photograph women at their most vulnerable. And we need the women who offered themselves up to be healed. Who put their faith in the hands of God and the hands of their surgeons—the most talented, the most skilled, the most dedicated to excellence.

Such a project would require a tremendous joint effort. If I'm serious about this, I guess I'd have to launch the raft to see if it can float, see if it can catch a current. The tide is heading out, and there's no time like the present.

The Little Mermaid by Edvard Eriksen

Wednesday, January 29, 2014

Battle Lines Drawn

One of the lovely New Orleans "Steamboat" Houses

If you’ve been reading my blog, you’ll remember being introduced to Wendy in December, 2012 (Ready to Be Restored). She’s the young mom diagnosed with breast cancer two years ago. You met her soon before her first stage of breast reconstruction, and she was raring to go! Especially after many months of chemo, surgery, radiation, and more chemo. Then we visited with her again in March, 2013 (On Her Way or Laissez Les Bon Temps Rouler). She’d completed her first surgery, the results of which she described as “amazing.” She felt a self-confidence in her appearance that she’d been lacking for a long time and was excited for the next stage of reconstruction. Her second stage went equally well—her results are beautiful. All she needs now are her nipple tattoos, and she will be able to join the “All Done” club!

Chalmette battlefield
So on my annual October pilgrimage to New Orleans, and after all our e-mails, messaging, and phone conversations during the course of the year, Wendy and I were determined to finally meet up in person. I was excited! She also thought it would be a great idea for our husbands to talk as well, since guys usually don’t have much of a support system when dealing with breast cancer. But I was worried after she e-mailed that she wouldn’t be having her nipple tattoos done that month, as planned. I knew that anything interfering with those finishing touches on her breast reconstruction must be very serious and probably bad. Which it was. She’d had a second occurrence of metastatic breast cancer in her bones.

Wendy and her husband picked us up in the French Quarter, in front of Muriel’s restaurant. Wendy is an absolutely lovely young woman. And not just by virtue of her youth and vitality, but literally quite beautiful, with brown hair, clear blue eyes, and an engaging smile and personality. She and her husband drove us on a fascinating tour of New Orleans sites we’d never seen before, including Chalmette National Monument, where the Battle of New Orleans—the last great battle of the War of 1812—was fought against the British. Andrew Jackson and his men earned the statue and the Square in the French Quarter for prevailing in the face of a much larger and more experienced army.  Wendy also showed us the Versailles live oaks in St. Bernard Parish, the magnificent "Steamboat" Houses at Lizardi and Egania Streets, and the WWI memorial on Burgundy. We topped off the tour with a delicious BBQ lunch at The Joint in the Bywater neighborhood, after which she and I enjoyed our extended show-and-tell in the ladies room, while the husbands had some alone time. She is still so happy she had her breast reconstruction. And I can personally attest to her fabulous results. I mean seriously!
"The Joint"

Fortunately Wendy has some very good news to report, too. She was accepted into a clinical drug trial at M.D. Anderson that shows lots of promise. This does require that she and her husband make a monthly drive to Houston to receive the medication—in pill form—and for monitoring. Unfortunately with clinical trials, some of the subjects do not receive the experimental drug, but instead, just a placebo. Wendy was told she had a 2 in 3 chance of receiving the treatment. But as it turned out, it appears that she is receiving the drug! In Wendy’s words: “It is just so crazy and wonderful that this clinical trial fell into my lap at the right time. I know I will overcome this, as I do have faith that there is a cure for this disease."

Wendy's January report was very good. Her scans show her cancer is stable. She will continue the trial, returning to Houston monthly, with new scans in April. As a postscript, I have learned some new lingo, which I passed on to Wendy. The ladies on the Stage 4 cancer threads on say - when their cancer is stable - that they are "dancing with the stable boy." When their cancer status is "no evidence of disease," they are "dancing with NED." Here's hoping that Wendy and her new drug artillery find her as successful as Andrew Jackson at Chalmette, and graduating from dancing with the stable boy to dancing with her husband far into their golden years.

Thursday, December 5, 2013

Teri's BRCA Story or Unconquered!

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 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.) 

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.

·         The Doctors episodes are here:

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.

·         Teri’s Blip in the Universe, launched in March 2009.
·         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.
·         Featured in Wired magazine February 2010 or pdf file:
·         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.
·         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:
·         Featured in a chapter of a book titled Pink Moon Lovelies: Empowering Stories of Survival, by Nicki Durlester, April 2013
·         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.