Category Archives: Breast cancer

Dating After a Mastectomy: DOs and DON’Ts, part two

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Welcome to the second installment of Rachel Joy Horn’s tried-and-true-and-possibly-resulting-in-a second-dinner-invitation DOs and DON’Ts of dating post-mastectomy. Since writing my first post in November, I am still single. So maybe I have no clue what the hell I’m talking about.

A perk of being single is bringing my best friend to the company holiday party.

At least I had a really sexy date to the company holiday party…my best friend Jennifer.

Moving on…let’s start with a don’t:

DON’T get into the nitty gritty details of your BRCA mutation, of your surgery, of your breast reconstruction—whatever it is you’re discussing. I’m not encouraging you to avoid it and I’m certainly not asking you to lie, but there are some details you can share, and there are some that you might consider keeping between yourself, your family and your doctors.

If a guy wants to know about my BRCA mutation, I give him a quick overview of how I came to be tested for the mutation. I don’t focus on the exact meaning of a BRCA2 6056delC mutation (which I’d be lying if I said I fully understand), nor do I obsess over the statistics associated with a BRCA mutation. Instead, I try to deliver the details that make the most sense to understanding why I’d elect to have a prophylactic mastectomy.

When it comes to talking about the actual mastectomy surgery, I start with a basic “I replaced the stuffing on my boobs.” I then elaborate with a much more scientifically backed “I took out the potentially bad tissue and replaced it with implants.” (I think that’s what they write in the medical journals, right?) I avoid discussing the thrilling experience of emptying the bloody goo out of my Jackson Pratt drains, the pathetic feeling of not being able to lift myself up out of bed to shuffle to the bathroom, and the crippling fear of “Oh my god, are my nipples going to make it out of this alive?!”

As one might expect, the breast implants are what usually interest guys the most. Often they assume that I could pick any implant size I want, so I politely correct them (read: laugh in their face–hahaha, you dumb fool!) and let them know that there is a sort of science involved with selecting, based on factors such as a woman’s natural breast size and chest width. They then usually want to know if I “upgraded,” so to speak, at which point I say that I wear about the same bra size I did before my mastectomy.

And this is what a silicone implant looks like.

Ooo, implant. Squishy squishy.

Most of my concerns about oversharing stem from not wanting a guy to think I’m fragile or broken in some sort of way. I also worry about encountering queasy types; call me old school, but I wouldn’t want a date to pass out in the middle of appetizers. So instead of getting too detailed, I make an effort to highlight certain information about my surgery:

DO stress the positives. The biggest and most obvious positive is of course the dramatic reduction in breast cancer risk. But in my experience, there have been additional perks (bahaha pun) to the mastectomy and breast reconstruction.

Before my mastectomy, my wardrobe decisions were dictated by an evil overlord known as The Bra. Support was the name of the game, and if an outfit couldn’t be worn with a bra, it wouldn’t be worn at all. I was often forced to pass up halter tops and strapless dresses, or worse: I’d have to decide between chunky bra straps sticking out of a backless dress, or concealing all of it with a sweater. Talk about a Sophie’s Choice. These days, I can wear backless dresses and halter tops like it’s nobody’s business. My wallet sobs, but my wardrobe has never been happier.

Look Ma, no bra straps!

Look Ma, no bra straps!

If a guy has a sense of humor, I don’t hesitate to bring up the tummy tuck possibility. Using my mom’s mastectomy and breast reconstruction as an example, I talk about how, if I gain enough weight in the future, I could replace my breast implants with stomach fat. This is definitely a glamorization of a DIEP/TRAM flap procedure, and I don’t mention the arduous recovery process, which I saw firsthand with my mom, but hey—it could be seen as a positive. My mom is living proof of this, what with her new boobs and flat tummy. Where I notice a guy losing interest is when I mention “having fifteen kids and completely letting myself go so I gain enough weight to have big ol’ jugs.” Apparently guys don’t like that? Who knew?

Geez, Mom, put those things away before you take someone's eye out.

Geez, Mom, put those things away before you take someone’s eye out.

My final perk is, you might have guessed, visiting the Playboy Mansion. (It seems I rely on this topic a lot when dating…thanks, Trisha.) It certainly is a rare experience, and I’ve found that for some odd reason, men have a lot of respect for Hugh Hefner. I’m not sure why. Now unless you’re all holding out on me and you’ve been visiting El Mansion with your glorious implants, too, I’m going to assume that we don’t have that story in common. But that doesn’t mean your mastectomy hasn’t come with any unexpected perks. Were you interviewed by a news station and you’ve achieved a degree of local celebrity? Did you get a kick-ass new tattoo in honor of your surgery? There might be a silver lining to share after all.

Welp, it’s late and I’m tired, so I think I’ll sign off now. Must log into Tinder and remind myself why being single might actually be a good thing. #guysinLA #areallactors #wouldyouliketoseemyheadshot #crazycatlady?

Dating After a Mastectomy: DOs and DON’Ts

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So, Bryce and I broke up. Eight months ago. It didn’t seem like particularly crucial information to anyone’s life so I didn’t feel the need to shout it from the rooftops (and by that I mean, post about it on the Interwebz). But lately I’ve received questions from other women about dating after a mastectomy, so it’s time to come clean about the break up.

Now, before I regale you with my dating experiences as of late, I want to make sure all of you ladies out there know that Bryce and I did NOT break up because of my mastectomy, my breast reconstruction, or my BRCA mutation. In fact, Bryce was 100% supportive throughout the entire process and showed a great deal of maturity, for which I’ll always be grateful. We broke up because at 22 years old, two+ years with the same person feels like a lifetime.

Sometimes I miss that Abe Lincoln lookalike, it’s true. And I definitely miss his puggle Hendrix. But I have, for the most part, been enjoying the single life. And it does make for some interesting reading material for the ol’ blog. So in order to report back to my loyal readers and answer your question “How do you tell someone you’re dating about your mastectomy/implants/BRCA mutation?”, I’ve been doing some research. And I’ve learned some DOs and DON’Ts of dating post-mastectomy. Over the next few months, I’ll be posting my findings…starting with:

googlestalkecard

DON’T ask a your date if he or she has Google stalked you. Just don’t. I met a guy at a web developer meetup event, and we went out a few times. During one date, I decided I would tell him about my BRCA mutation and mastectomy, and since he was a computer programmer and had previously told me to check out his personal website, I assumed it was safe to ask him if he’d seen mine. In my head, this is how I imagined the conversation would play out:

  • Rachel: “So, did you Google me and find my blog?”
  • Guy: “Why yes, yes I did.”
  • Rachel: “And what did you think?”
  • Guy: “I thought your decision was brave and understandable. You are very smart and wise. I am in awe of your courage and good looks. Also, your writing is hilarious and the simple WordPress.com layout on your blog is not at all outdated. I would like you to meet my rich great aunt who owns the largest book publisher in the world. Oh and would you like to get married?”
  • Rachel: “OH…um…okay…”

The actual conversation went a bit differently:

  • Rachel: “So, did you Google me and find my blog?”
  • Guy: (confused) “…No…”
  • Rachel: (not convinced) “Are you SURE?”
  • Guy: “…I didn’t see it…” (Probably thinking to himself: Oh my god what is her blog about? Is she a serial killer? Porn star? Cult member?)
  • Rachel: “OH…um…okay…well it’s about breast cancer and stuff…”
  • Guy: (Runs away, screaming.)

OK, so he didn’t really run away screaming, but the horrified look on his face made it pretty obvious that I had made a fatal boo boo. Since I write this blog and I’ve received press coverage for it, I assumed that the guy–being well versed in the ways of the Internet–had already run a Google search of my name and had come across the blog and articles about me. I thought it would be an easy way to cheat and deal with the subject without having to explain it myself.

I was obviously wrong. I still had to explain it all to him–the BRCA mutation, the family history of breast cancer, the mastectomy, the implants–but I had to do it while fighting to convince him that I wasn’t hiding something really bad. Oh well. Lesson learned. Instead of asking guys if they’ve Google stalked me, I now try another tactic:

DO look for ways for your date to indirectly mention it (BRCA mutation, mastectomy, whatever “it” is) without knowing…I call these “topic triggers.” A few weeks after the failed date (which was also my LAST with said guy…hmm, I wonder why?) I went out with another guy, who I had met online. In my dating profile, I mentioned that I blog (in addition to other exhilarating hobbies, such as scrapbooking, playing with my cat, and being a grandma). A fellow writer, he was curious about my blog.

I explained to him that my blog is about hereditary breast cancer and preventative surgeries, a seemingly niche topic with a surprisingly big audience online. I mentioned that yes, I had undergone a prophylactic mastectomy and now had breast implants, but most of the conversation was focused on the blog and the actual writing of it. It ended up being a very valuable conversation for me, because he helped me sort through some issues I’ve been having as a writer.

It baffles me that I'm still single.


With a witty OKCupid profile like this, it’s a wonder I’m still single.

This tactic of subtly sneaking topic triggers into the conversation has worked well for me multiple times. For example, I’ve used my visits to the Playboy Mansion as a segue to my BRCA mutation and mastectomy. Guys are usually so excited that I’ve met Hugh Hefner that they don’t get freaked out by the big scary mastectomy topic.

Now I realize that not all of you run your mouth on a WordPress blog or frequent the Playboy Mansion, but there are other ways to sneak in topic triggers. Do you volunteer with any high-risk breast cancer groups or participate in charity walks for breast cancer? Those are hobbies to discuss. Maybe you’ve taken some time off from work for your surgeries and you’re preparing to go back? Talk about your return to the office.

If you try this and it backfires horribly…well…sorry. 5-carat diamond engagement rings are not guaranteed with this method. But stay tuned for more DOs and DON’Ts, and maybe you’ll find a gem after all.

Two big wins for the high-risk breast cancer community

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First, Facebook clarified their stance (link NSFW) on mastectomy photos:

“We have long allowed mastectomy photos to be shared on Facebook, as well as educational and scientific photos of the human body and photos of women breastfeeding,” Facebook said in a prepared statement. “We only review or remove photos after they have been reported to us by people who see the images in their News Feeds or otherwise discover them. On occasion, we may remove a photo showing mastectomy scarring either by mistake, as our teams review millions of pieces of content daily, or because a photo has violated our terms for other reasons. As a reminder, our terms stipulate that we generally do not allow nudity, with some exceptions as laid out above and here, consistent with other platforms that have many young users.”

This is great news for everyone in organized Facebook groups such as Young Previvors, the group I have come to regard as my safe haven throughout (and even after) my surgeries. One of the most valuable aspects of these communities is being able to see what to expect following surgery, and it’s wonderful that women–some of whom would otherwise have no access to post-mastectomy photos–can share with each other as a means of support.

And in other big news, today the United States Supreme Court ruled against the patenting of human genes in the case Association for Molecular Pathology v. Myriad Genetics, Inc.

From the SCOTUS blog: “The Court held that a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but manmade cDNA is patent eligible because it is not naturally occurring. The case involved the well-known BRCA1 and BRCA2 genes, which can involve mutations that increase the likelihood of breast cancer.  The ruling is significant for a variety of companies (including Myriad) that hold important DNA patents.”

This decision will result in lower costs for testing for gene mutations such as BRCA1 and BRCA2, making it much easier for women (and men!) to access the test. It will also mean more money and motivation for research.

I’m a happy camper!

I had a mastectomy before it was cool…#hipstersofmastectomies @AngelinaJolie

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My Medical Choice by Angelina Jolie

Last night, actress Angelina Jolie went public in the New York Times with her decision to undergo a prophylactic mastectomy. She revealed she carries a BRCA1 mutation, and that her mother passed away from cancer at the age of 56.

In her piece, Angelina writes about her children wanting to know if she would succumb to the same fate as her mother. She talks about the cancer risk associated with her BRCA mutation and the various steps of the surgery. These sentiments are all familiar to any woman who carries a hereditary breast and ovarian cancer risk, but what resonated with me the most in her writing was this:

“But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”

Thank you, Angelina, for sharing your story. Every time a woman is brave enough to open up about her experience with hereditary cancer–from Angelina Jolie to Giuliana Rancic to Christina Applegate to my dear friend Trisha to ME!–there is limitless potential for making a difference. How many women will opt for BRCA testing because of Angelina Jolie? How many high-risk women will be more inclined to consider preventative surgery? Even if just one woman takes action, Angelina Jolie’s revelation will be worth it.

You go, girl. Thank you for joining the ranks of selfess women who have opened up about their mastectomies.

A reflection on Mother’s Day

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I woke up this morning thinking about my mom and everything she’s given to me. She gave me heart-shaped chocolate cakes every year on my birthday. She gave me hand-sewn Halloween costumes, from the Little Mermaid to Marilyn Monroe. She gave me Harry Potter books, shipped to me at summer camp on the day they came out.

She gave me a love for painting and a thirst for writing. She gave me the drive to make everything I do just a bit more special. She gave me confidence.

She gave me blue eyes. She gave me hips. She gave me big feet.

She gave me a BRCA gene mutation.

textfrommom

“I have always wanted to give you everything and it makes me sick that i gave you something so awful without even knowing it. i love u babe.”

That was the text my mom sent me on October 25, 2011, after I told her over the phone that I had tested positive for the BRCA mutation. We had gone out to lunch earlier that day; I knew the results during lunch, but I couldn’t muster the courage to tell her. So I waited until that evening.

I guess she was right; she did give me “something so awful.” But she didn’t intentionally give it to me…she didn’t handpick my genes. It just happened.

And you know what? Whatever. It’s awful, she’s right, but in a way…it’s not.

She gave me a BRCA gene mutation, because one of her parents gave it to her. But by testing for the mutation and sharing her results with me, she gave me an extra shot at life, too.

Without her positive test result, I would have never heard of the BRCA genes, and I would have never been tested. What could that have meant for me in the future? Well, my mother has had breast cancer twice because of her BRCA mutation, so you do the math.

She gave me a BRCA gene mutation, but she also gave me the ability to control something about my future.

It’s Mother’s Day, and I feel fortunate to have such a wonderful mother. I love to see the universal appreciation for moms. Moms are awesome.

I hope that no other BRCA-positive (or genetic mutation-positive) mothers ever feel guilty the way my mom did when she found out about my mutation. It was heartbreaking to read that text, to know that my mom felt as if she had done something to hurt me. My mom has given me and continues to give me so much–surely this one hiccup could do nothing to diminish a lifetime of love.

Happy Mother’s Day, everyone.

Working for a living, living for a cause

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I write this blog post as a very proud daughter and as a very excited member of the breast cancer prevention community. I’m so pleased to share with you the good news that my mother, Shirley Horn, is the new Director of Marketing & Communications for the Dr. Susan Love Research Foundation.

Shirley Horn

Founded in 1983, the Foundation’s “groundbreaking research is focused on finding the cause of breast cancer and stopping it before it starts.” When my mom was diagnosed with breast cancer for the first time in 1999, Dr. Susan Love’s Breast Book was a key resource to navigating the difficult road to recovery. The book is now in its fifth edition, a testament to its value to the breast cancer community.

imgActWithLoveNew

The Santa Monica-based Foundation is a small group of people dedicated to supporting breast cancer research. Its Army of Women program boasts over 371,000 women to participate in cancer-related clinical research, and its Health of Women study is an actively-growing online medical research study.

When breast cancer reared its ugly head again in 2011 with her second diagnosis and the news of our BRCA gene mutation, my mom felt empowered to take a stand. This is the perfect opportunity for her. She writes: “In my new role, I’ll be spreading the word about this amazing organization and the visionary Dr. Susan Love, promoting participation in the Army of Women and Health of Women study, and seeking high-profile marketing partners to help the Foundation further its mission.” I am thrilled that she will be able to contribute to the fight about breast cancer.

Please join me in congratulating my mom on this stellar achievement by signing up for the Army of Women and the Health of Women study. When you join the Army of Women, you will gain access to information about all sorts of breast cancer-related research studies, such as a study about the effects of certain types of birth control on breast tissue. And the Health of Women study consists of a series of questionnaires that are completed entirely online. You don’t have to have a personal or family history of breast cancer to participate in either effort, and heck–you don’t even have to be a woman! So why wouldn’t you join?

Congratulations, Mom, on your wonderful new position. I can’t wait to see the difference you make.

 

Feeling downtrodden today, but I need your help to get back up!

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My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.”

Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”

29 years old.

Frances and Rebecca’s deaths are just two of many breast cancer-related losses I often hear about, but the news NEVER gets easier to swallow. Frances could have been my mother; Rebecca could have been me. I thank my lucky stars that my mother and I are both healthy and thriving, but two families are hurting right now, and though I did not personally know either woman, I am hurting, too.

These amazing women did not have the chance that I had to say “NO WAY” to breast cancer before it could come knocking. My BRCA mutation robbed me of a lot: the ability to be carefree, the trust I had in my body, and of course, my breasts. But it gave me something too: the chance to save my own life.

I’m a previvor. I survived my predisposition to breast cancer. If you’ve been following my blog, you know it hasn’t been an easy road to walk. I would not wish it upon anyone, especially a young woman like me. But it was necessary.

As more women learn about the BRCA mutations (and other rare genetic mutations linked to breast cancer), they are faced with the difficult decision to undergo prophylactic surgeries. They have questions. They have concerns. They are scared. And sometimes, they feel like they have no where to go, because there is no one who understands.

There is, though. There is a whole community who understands–you just have to turn on a computer.

Yesterday, Emperor Zuckerberg and his droids over at Facebook shut down part of that community. Young Previvors was a group of nearly 200 women just like me. It was a safe haven away from judgment and fear where high-risk women could ask questions, voice concerns and share stories of hope.

Young Previvors helped me when I was initially shocked by the unevenness of my new silicone implants. I shared my photo, and was soothed by the outpouring of support from women who had over time seen improvement in their own implants.

I helped women on Young Previvors, too. I described the early signs of my cellulitis infection and how I finally got my Jackson-Pratt drains taken out. I reached out to other young women, college students who were just learning about their cancer risk.

Now we need your help.

We don’t know why Facebook shut down Young Previvors. The group was not at all public; on the contrary, the privacy settings were very intense and all members were pre-screened by the group founder/moderator. Only group members could view posts from Young Previvors.

Please “like” our new page on Facebook. Share the page with your friends and ask for their “likes” too. On Twitter, tweet the hashtag #SaveYP and retweet the message from Young Previvors. You could even email Facebook directly: disabled@facebook.com.

We hope that these efforts from the public will show the people over at Facebook that this group is crucial. Isn’t the point of social networking to connect, to form a community? We did that. Why did Facebook punish us?

If just one young women like me does not find the support she needs because Young Previvors is gone, then it will be a huge loss.

Thank you so much for your help. I will keep you all updated on the progress of the group’s restoration.

 

A helpful tool for assessing cancer risk

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Good morning, everyone. I just wanted to pop in and share with you all a nifty little tool from Stanford University, called the BRCA Decision Tool. If you are BRCA 1 or BRCA 2 positive, this calculator could help you assess your cancer risk.

According to the Stanford website, this tool: “calculates the probability of health outcomes for women ages 25-69 who carry a BRCA1 or BRCA2 mutation, and who have never had the following: 1) cancer; 2) screening mammograms or magnetic resonance imaging; 3) preventive surgery to remove breasts, ovaries or fallopian tubes; 4) preventive medications such as tamoxifen or raloxifene.”

Obviously, you should NOT take this tool’s information as the final word in your cancer risk, but it’s sure helpful and makes it a bit easier to understand your individual risk. I found it very beneficial when thinking about my risk of ovarian cancer. I am BRCA 2 positive and honestly didn’t know too much about the correlation between BRCA 2 and ovarian cancer. I know that my mother had a prophylactic oopherectomy at age 58, but I had no idea when I should start thinking about my own preventative surgery. Obviously I’d wait until after I have kids, but at what age would I be pushing the envelope?

BRCA Decision Tool

The above screencap shows my results. The age minimum is 25 but I am only 22, so I just went with it and pretended I had my mastectomy at 25. I’m breathing a small sigh of relief seeing those numbers. While I still plan to be diligent about screening starting around age 25, at least I can enjoy knowing that my ovarian cancer risk is much lower than what my breast cancer risk would have been had I not done the prophylactic mastectomy.

This tool was brought to my attention at a recent FORCE meeting in Santa Monica. It was a great meeting–the Young Women’s group met for the first time. And I got to see Trisha as well as a few of my blog readers! Incase you’re all wondering, Trisha looks fantastic.

On Thursday I have my two-month post-op appointment with Dr. Festekjian. Details to come, but for now–off to work!

 

Talking to your kids about cancer

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This is a guest post written by mother, two-time breast cancer survivor Shirley Horn. I don’t have Internet access in my new apartment, so I haven’t been able to post lately. But I’ll update you all soon! For now, enjoy my mom’s writing.

Decisions about parenting are like decisions about breast cancer treatments:  only YOU know what’s best for your children and yourself, regardless of what any of your close or not-so-close relatives or friends have to say about it.  When you’re faced with a disease as daunting as cancer, how to tell the kids is one tough part of the process.

My husband is Jewish and very traditional in his cultural and secular views. “Don’t tell the Kinder,” is a phrase I’ve often heard in our 24 years of marriage. (“Kinder” is Yiddish and German for “children”.) With my husband and his generational peers, it’s a deeply held belief that children should be allowed to keep their innocence as long as possible, unburdened by the woes of the world. When Rachel was very young, it seemed a good mantra to uphold and I wanted to protect her from everything that was bad or sad.

Shirley and Rachel in 1990 in England

We had just moved from Massachusetts to California when I was diagnosed the first time.  My daughter was 9 and she was settling down in our new neighborhood and making friends in her new school. Although she was a bright and precocious fourth-grader, we chose not to share the news with Rachel until we knew as much as we could know about my cancer and treatment plan. Since I had a lumpectomy rather than a mastectomy, it was an outpatient procedure and although we told her I was going to have an operation, I was home when she got home from school that night and functioning fairly normally. A couple of weeks after the surgery, we were off to a family reunion to celebrate our old uncle’s 80th birthday.

Chemo is, of course, a different story, and one not easily hidden. If the sight of Mom going bald isn’t enough to scare the wits out of a child, watching Mom with her head in the toilet heaving her guts out several times a day for a couple of days every week will certainly do the trick. (Or at least make your kids think twice about eating Dad’s cooking!)

A few weeks before my chemo began, I sat Rachel down one afternoon and explained.  “Mom’s sick.  I’ve got something called breast cancer. That’s why I’ve gone to the doctor a lot lately and went to the hospital last month. I’m going to be OK, but I’m not completely done yet. Soon, I’m going to start taking some medicine that is really strong and powerful.  The medicine is going to make me sick, too, but just for a little while. It’s even going to make all my hair fall out, but it’s going to make me better so the cancer doesn’t come back.” I think I said a few more things and then I asked Rachel if she had any questions. She said, “May I have a cup of tea, please?” That’s when I knew she’d be OK, too.

Rachel went wig shopping with me. We made a day of it and went to a cool shop that had a large selection of wigs and hats. She had fun helping me try on the wigs and she even got to try on a few. Together, we selected my wig (which I ended up wearing only once) and we each picked out a cute hat. She was part of the discussion when I decided to get my “G.I. Jane” haircut before chemo began, and she defended my honor when the kids at school teased her about having a bald mom.

We were fortunate to have several wonderful friends (mothers of Rachel’s friends) who pitched right in and drove carpool, brought over meals and invited Rachel for sleepovers during my treatment. Rachel herself maintained a cool and calm composure; I don’t ever remember her showing fear or being upset. If she was, she never let me see it. Even at 9, her protective instincts were there.

How old should a child be before you suspend the “Don’t tell the Kinder” rule when it comes to something like cancer? Not every 9-year-old child is capable of handling the Big C with the poise and maturity that Rachel showed. Your 7-year-old may absorb the news and deal with your illness by becoming Florence Nightingale and never leaving your bedside. Let your motherly instincts and intrinsic understanding of your child’s disposition guide you.

I found that being straightforward with my daughter and involving her in the process was the best course of action then.  12 years later, when my cancer returned and I discovered that I carry the BRCA 2 gene mutation, it was still the best course of action.

Shirley and Rachel at graduation in 2012

Shirley Horn is a retired marketing professional living in Redondo Beach, CA. She is an avid paddler for the Los Angeles Pink Dragons, a breast cancer survivor dragon boat team. She is also an artist and sells her work, along with custom-made mastectomy drain pockets and pit pillows, on her online store Precious Survivors.

The FORCE meeting, another fill, and the Pan-Mass Challenge Teen Bike Ride

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Is it really Sunday evening already? Where did the weekend go?! (Note: It’s now Monday and I am posting this while at work since I don’t have access to the Interwebz at home!) Well, now’s the time for reflection…starting with last weekend!

Last Sunday I attended a FORCE meeting in Agoura Hills. FORCE (Facing Our Risk of Cancer Empowered) is an organization focused on hereditary breast and ovarian cancer. There are chapters all over the country, including a few in Southern California. Until last week, I’d never attended a FORCE meeting.

There were about twenty women present, as well as a few brave husbands. We spent some time mingling and getting to know one another. Trisha was there and since I felt like the awkward new kid, I stuck to her. But I did make some new BRCA friends, too! Finally the guest of honor arrived: Dr. Karam!

If you’ve started reading Ticking Time Bombs recently or you’re a veteran reader who hasn’t been taking copious notes on every post, you might need a quick lesson on Dr. Amer Karam. I always talk about Dr. Festekjian, my plastic surgeon, but he is only half of my mastectomy dream team (I bet you didn’t know there was such a thing!). Dr. Karam is the breast surgeon who performed the first part of my mastectomy in March, removing all of my breast tissue. His official title is gynecologic oncologist; he performed my mom’s oophorectomy in February. We Horns really do like to keep things in the family.

With Dr. Karam’s arrival, we started the actual meeting. First there was a round of introductions; most people shared their name, family history of cancer, BRCA status, and if they have had or are planning to have any surgeries. There were a fair number of women who had already undergone prophylactic mastectomies and oophorectomies, but there were also quite a few who were just beginning to consider surgery.

Check out Dr. Karam’s red shoes…he’s a breast surgeon with impeccable fashion sense. (Photo borrowed from Trisha.)

The Q&A with Dr. Karam was very random and tangential. It seemed that one person’s question would inspire a new question from someone else, and we sort of bounced around the room for a few hours going from question to question. To be honest, all of the talk about breast cancer bored me—it’s really not on my radar anymore since my mastectomy! But I did find the discussions about ovarian cancer and breast reconstruction very useful.

Dr. Karam is a fantastic resource and I think he helped a lot of women at the meeting. He knows how to explain complicated scientific concepts in much simpler, easy-to-follow ways. I felt very proud to tell people there that he was my breast surgeon! It was almost a sort of “hahaha my breast surgeon is better than yours neenerneenerneener sticking my tongue out at you” moment.

The best part of the FORCE meeting was the breast reconstruction “show and tell” at the end! I felt relieved that my tissue expanders looked similar to those of other women at the meeting. And I got to see someone’s “finished product” which made me even more excited for my implants—hers looked amazing! A few of the ladies who are considering prophylactic mastectomies were very impressed by what they saw…my tissue expanders included. I think it’s very helpful and reassuring to see that the final outcome of a horrendous surgery can look so fantastic.

On Wednesday morning I had a tissue expander fill with Dr. Festekjian. I’m now up to 650 ccs of saline on each side, and I can certainly feel more tightness. We talked about what I want in an implant. I am most concerned about projection. Dr. Festekjian mentioned that style number 45 gives the most projection, but those implants are more narrow so they usually look best on people with a small chest. He said the next best option is style number 20, which my mom has.

Just for reference, this is what a tissue expander looks like.

And this is what a silicone implant looks like.

I know for sure I will have one more tissue expander fill, putting me up to 700 ccs on each side. I could go up to 750 ccs, but I think that might be a bit too big for me. These tissue expanders are starting to get pretty bulky! Plus, I want to have the implant exchange surgery on November 19, so the final tissue expander fill needs to be six weeks before that date.

Dr. Festekjian said that he will order a few options for implants. During the actual surgery, he’ll “try them out” to determine which looks best. Gee, it sounds like we’re shopping for prom dresses!

OK, now for something completely different: I want to mention the Pan-Mass Challenge Teen Mountain Bike Ride, an event organized by my niece and nephew.

First, a bit of background on the Pan-Mass Challenge: The Pan-Mass Challenge is a bike-a-thon held every summer in Massachusetts. 100% of the money raised by riders is donated to the Jimmy Fund, a cancer research and treatment center at the Dana-Farber Cancer Institute.

My sister Wendy has participated in the Pan-Mass Challenge for twelve years, raising over $127,000 for the Jimmy Fund. This year, my niece Nicole (age 14) and my nephew Matthew (age 16) are stepping up their game by organizing the first Pan-Mass Challenge Teen Mountain Bike Ride, for 13-18 year olds.

The Teen Mountain Bike Ride will be held on October 13 at 9 am in Westwood, Massachusetts. If you know of any teenagers in the Boston area who are in need of community service hours, please let them know about the ride. It sure beats picking up trash on the beach!

Needless to say, I’m very proud of Matthew and Nicole for taking the reins on this idea. The Pan-Mass Challenge is a well-respected event in New England, and there is a similar bike ride for younger kids. Matthew and Nicole saw the need for a ride aimed at teenagers, and they’re making it happen.

Matthew and Nicole, the founders of the PMC Teen Mountain Bike Ride. Just a side note: aren’t they ridiculously good looking?

They’ve always been very receptive and caring kids. This past April, when they came to visit for their spring break, Nicole pulled me aside and asked how my boobs were doing (her words, ha!) Okay, I know that’s not a huge deal, but she’s only 14. (Actually, she was still only 13 at the time!) I was so touched and impressed that she not only understood my choice to have a mastectomy, but that she wanted to check up on me. It’s not exactly a light topic for anyone, let alone a teenager.

For more information, please visit the official page for the Teen Mountain Bike Ride, as well as this article published by a local newspaper. I wish I could be there in person to support Matthew and Nicole during this great event. There’s always next year!