Category Archives: Breast cancer

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.

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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.

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“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.

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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!

 

Today is National Previvor Day…

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…and I want SO BADLY to blog about it, but I am so freakin’ exhausted from work–it was an almost twelve hour day! And I loved pretty much all of it, that’s the great part. Because really, how lucky am I to be able to spend my time running around like a crazy person, worrying about getting the proper tools and wrapping paper for a video shoot instead of worrying about chemo drugs and hospital visits?

That is really the essence of being a previvor for me: not taking the little things for granted. Because even those long, hard days that make me collapse on the couch are just reminders of LIFE and how fortunate I am to enjoy it all!

Check out more information about National Previvor Day and learn what it means to be a previvor.

And I promise that once this crazy work week is over, I’ll have a fresh blog post with updates about my first FORCE meeting, an amazing fundraising event for cancer research, and my latest tissue expander fill. (Just a teaser: I’m already up to 650 ccs of saline on each side!)

Expander fills resumed, Making Strides, and a bit of promotion

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Last Thursday I had my first tissue expander fill since having the left expander inserted on July 30. It was AWESOME–simple joys, right? I was so excited and anxious that I told myself I was going to let Dr. Festekjian do the fill without numbing me up. Of course I reneged on this decision, since I am a baby when it comes to pain and just the sight of the syringe and needle scared me into the numbing cream.

The numbing cream only delayed the process by a few minutes so it was totally worth it; I could barely feel the needle go in. Dr. Festekjian filled up the left side with 75 ccs of saline. We are going to let the left tissue expander “catch up” to the right tissue expander before we resume fills on that side. Right now my left side is at 325 ccs and my right is at 550 ccs. Each tissue expander can accommodate 750 ccs of saline. I anticipate I’ll need about nine more fills (at 50 ccs each) until I reach the maximum capacity.

On Sunday morning, Bryce and I woke up bright and early for the Making Strides Against Breast Cancer 5K walk in Santa Monica. I stayed up late the night before preparing my talking points for the survivor’s speech (or in my case, previvor). Bryce and I both wore Demand Media team t-shirts for the event and pink sunglasses; he looked very sexy in his pair, I must say.

Team Demand Media–I’m so proud to work with these people!

The event was small (compared to the 3-Day walks I’ve done in the past) but very successful and well-organized. There were at least 100 people there, and the sponsors included Demand Media (whoot whoot represent!), Equinox gym, and Go Country 105—my favorite radio station!

My “previvor” speech came after the address by an American Cancer Society rep. Since it was rather toasty outside, I tried to stay concise and upbeat. I ended up ditching my page of talking points as soon as I got up on stage. I mean, who am I kidding? This is MY story—I know it by heart!

I talked about my mom’s multiple cancer diagnoses and how I reacted to each one. In terms of her second diagnosis, I mentioned how angry and frustrated I felt and how many questions I had, and that those questions were all answered when we found out about the BRCA mutation. Then of course I talked about my own decision to have a prophylactic mastectomy, and though I’m fortunate to have that option, hopefully research will make it possible for my future children to have another more “civilized” option. I really wanted to connect a story about breast cancer to the walkers and their fundraising efforts, to let them know that the money they raised was going to help someone in a tangible way.

I walked in honor of my mom and my cousin Robbie.

After my speech, the walk started. We marched around a local park for about an hour; apparently four laps around said park is equivalent to a 5K. Once everyone was back from the walk, Kate (the Demand Media employee who helped plan the event) announced that we’d raised over $18,000! I was very impressed.

Kate did a stellar job organizing the event. It must have been very stressful for her to plan a charity walk while keeping up with her full time job. But she pulled it off and I’m proud to work with her. Good job, Kate!

Thanks for organizing the event, Kate!

Now, onto that product promotion I mentioned in the title of the post. I don’t do this very often so I feel that I’m allowed to include it now!

First off, my fabulous and talented mother Shirley Horn has decided (after much badgering from me) to launch her own online store, called Precious Survivors. What is she selling? Well, that is a good question! CUSTOM DRAIN POCKETS AND MASTECTOMY PILLOWS AND HAND-PAINTED ORNAMENTS! (Gee, that sounds swell!) Inspired by Trisha’s mastectomy and her hunt for a mastectomy bra, Mom created some adorable drain pockets. They have velcro attachments to connect to a mastectomy bra, and they are so colorful and cheerful. And they’re only $6 a pair!

Mastectomy pit pillows made by Shirley Horn

She is also selling handmade post-surgical “pit pillows”, heart-shaped pillows to rest under your arms after a mastectomy. My friend Kim gave me a pit pillow for my mastectomy, and it was perfect; it wasn’t too hard or too soft and my arm rested in the crevice without any pain. The pit pillows currently listed are Hello Kitty print, but Mom will take custom orders for a different fabric.

A portion of all of the sales from Precious Survivors goes towards breast cancer programs, such as the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. Dragon boat racing is a great way for breast cancer survivors to prevent lymphedema, which can be caused by lymph node removal.

If you’re looking for a gift to give a loved one who is about to have a mastectomy, check out the Precious Survivors storefront. Mom created these products based on both of our experiences with mastectomies, so they are definitely patient-approved!

Now onto the other promotion. A few weeks ago I received a lovely email from a woman named Ann Victor, the president of PerfectCami, a fashion company. Recently Ann has designed a line of camisoles aimed at the post-mastectomy crowd. She graciously sent me a few to try out, and I LOVE them.

The camis attach to your bra straps and therefore stay in place when you bend over. I am always worried about people seeing the inserts on my left side; the camis prevent any accidental insert flashing! They also work nicely to cover bra cups and straps. The bras I wore before my mastectomy were underwire and the cups did not extend high up on my chest; the soft bras I use now have more fabric, so it’s difficult to wear any relatively low-cut shirts or dresses without the bra peeking through. The camis hide the bra perfectly.

If you’re interested in ordering any of the camis, visit the PerfectCami website. They come in a variety of colors and styles (I’ve got red lace, black lace, white striped, black striped, leopard and a few more!) and five sizes.

OK, signing off now. I have to get ready for my trip to Vegas this weekend! Have a great weekend everyone.

 

My first tissue expander fill is tomorrow,

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and I’m SO EXCITED!

Okay, so it’s not my first fill ever–I’m already up to 550 ccs on my right side–but it’s my first fill after losing my left expander to an awful cellulitis infection! I’m just feeling grateful that my reconstruction process is finally underway again.

Last Friday at work we had a “Think Pink” party to raise money for Making Strides Against Breast Cancer, a 5K walk in Santa Monica this weekend. We have a Demand Media team for the event! Needless to say, I’m pretty proud of my company.

The Think Pink party was a great success. There were pink ribbon cupcakes, bottles of rosé wine, pink cookies, raffle tickets and more, each for a $1 donation. We raised over $600 in just an hour.

The coworker who organized the event asked me to share a bit of my story, as a way to remind people that no community or person is immune to breast cancer. I am obviously very open about my BRCA mutation and my mastectomy, so I was happy to speak. The strangest part was revealing my age to my coworkers! If they didn’t already think I was a baby, now they know for sure.

Reflecting on the last year as I told my story was a great reminder to myself about why I made the decision to have a prophylactic mastectomy. I talked about my BRCA mutation, my mother’s cancer diagnosis, my mastectomy, my infection…and then I remembered what my brother said about the choice between “something fatal” and “something fucked up.” I quoted him, and everyone laughed, but it’s such an accurate description.

I closed my spiel by saying that hopefully in the future, the money raised for breast cancer research will make it possible for women my age to not be faced with such drastic choices. Hopefully there will be another option out there.

I didn’t have another option, but I am still grateful that I had some kind of choice. Because even though the last few months have been very trying–especially with the infection–they have been cancer-free. They have been on MY terms. And I am so very fortunate for that.

My amazing coworker Kate organized the party and is also an organizer for the entire walk.

The Making Strides Against Breast Cancer walk is on Sunday, and I’ll be speaking again at that event. I’m very excited to participate, especially since it’s been more than two years since my last charity walk!

When I found out Demand Media was participating in the event, I was ecstatic. It gives me a very warm feeling to work at a company that backs this important cause. My coworkers have been so supportive of my entire situation.

It’s crucial to be a part of an understanding community. I am realizing that more and more. On Monday evening, my mom and I had dinner with Trisha and her mom Linda. Linda flew out from Texas for Trisha’s surgery (which is TODAY–will get to that soon!) Chatting with them over dinner was relieving and comforting. We were able to connect and speak honestly without any judgment. I am so thankful to have them in my life!

I am also happy to be a member of a blossoming web community of BRCA-positive individuals and young women who are taking their health into their own hands. Being able to post random questions (about surgery, mastectomy bras, drains, scars–anything!) and get fast and honest responses is priceless. Social networking is a miracle! If any of my blogger friends are interested in joining these Facebook groups, please send me an email (rachel@tickingtimebombsblog.com) and I’ll add you.

Now, an update on Trisha: her prophylactic mastectomy was today at noon! I haven’t heard from her mom yet, but I’m assuming that no news is good news and that everything is going well. On Sunday I visited her at the Mansion and we spent the afternoon by the pool. I wore my mom’s new kick-ass pink one-piece bathing suit. (Side note: I’m pretty sure I am the only person in history who has ever worn a one-piece at the Playboy Mansion.)

Trisha has such a positive attitude towards her mastectomy. She introduced me to quite a few people at the Mansion on Sunday, and told all of them that I’d already had a mastectomy. That seemed to relieve them a bit; she is well-loved, so people worry about her. In a way, I’m visual proof that a woman can still have a very full and active life after a mastectomy.

Here’s Hef and all of the girls at Sunday Funday. Hef and I matched! He has good taste.

Hopefully I’ll get to visit Trisha in the hospital. I’ll try to at least post an update about her surgery and recovery, so check back for that!

UPDATE: I talked to Trisha on the phone for a few minutes around 7:15 pm! Besides sounding very groggy, she seems to be doing well. When I talked to her, she had been out of surgery about an hour and a half.