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

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.

 

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A helpful tool for assessing cancer risk

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

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

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…

…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

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,

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.

 

Rachel’s interview with BRCA+ Playboy-girlfriend Trisha Frick, part two

As promised, here is the second part of my interview with Ms. Trisha Frick, girlfriend of Hugh Hefner. I received very positive feedback regarding the first part. As you can tell, Trisha is very open and insightful. She explains her opinions and decisions and is honest about the situation. I am so grateful that she has decided to share her story, and I encourage other readers to do the same. You never know who you’re helping!

And again, I have to note that this interview was very spontaneous and all over the place; it was more of a conversation than anything, hence the random topic jumps. Enjoy!

Rachel: When you got tested for the BRCA mutation, were you worried about insurance?
Trisha: No not really. By that time, the law had passed that it can’t be held against you. I know a lot of women out there are still worried about getting tested because they think their insurance will go up. I got tested through one insurance company, and then I got on my own insurance with them knowing I had the gene. So it is possible. My rates didn’t go up, my deductible didn’t go up.

Rachel: Hopefully in the coming years, more and more people will start to learn about the gene itself and learn about the insurance laws. Do you have any ovarian cancer in your family?
Trisha: No, thank god. But I still get tested every six months.

Rachel: How do they test for that?
Trisha: They use ultrasound and the CA-125 blood test.

Rachel: When you’re older do you think you’ll have an oopherectomy?
Trisha: Probably. It depends. The chances of ovarian cancer are increased, but not as alarmingly as they are with breast cancer. Especially BRCA2 versus BRCA1—it depends on which one you have. When it comes to that point, I’ll probably be married so it’ll be easier to make that decision. Just the whole going into menopause right away is a huge thing to think about.

Rachel: That’s a good point, I never even considered that.
Trisha: My aunt had her boobs done because she had breast cancer, and then when she was done she immediately had her ovaries out. And so she went through menopause, and it was hard on her to go through menopause at an early age.

Rachel: So do a lot of people—at the Playboy Mansion and your friends in general—know about the BRCA gene and your mastectomy decision? Do you talk about it with them?
Trisha: My friends in general know it, and the people that I’m close to—the core group at the Playboy Mansion—know about it. And they’re very supportive. They just say, “whatever makes you happy. Whatever you need to do in life, do it.” I don’t think that everyone outside of the BRCA community understands it completely, but they understand the generalization of what you need to do and they’re very supportive which is good. I came to the Playboy Mansion with Hef and others knowing I had this. And they still accepted me.

Enjoying Sunday Funday at the Playboy Mansion…many thanks to my gracious host, Mr. Hugh Hefner, and his lovely girlfriend (and my tour guide) Trisha Frick.

Rachel: Oh interesting! So you were open about it?
Trisha: Yes, I was open about it before I came here. I told them that at some time, I’m going to have a mastectomy done. I didn’t say when exactly, but I said that at some time in my life I’m going to have this done—and they were very accepting of it.

Rachel: That’s great. I’ve learned that most people are accepting of it. I think the oldest generations are the most freaked out by it. Sometimes they say, “why don’t you just wait to see what happens? They could come out with something!”
Trisha: I’ve heard that, even from younger people. But I don’t want a recall on a drug and still have a chance of cancer. I don’t want the side effects from a recalled drug.

Rachel: I agree. I think my peace of mind is more valuable than waiting for some sort of miracle drug to be produced.
Trisha: They’ve been trying to figure out cancer for years. I don’t see them, in the immediate future, saying, “Oh, here’s the miracle cure!”

Rachel: Nope! So, back to your surgery. Is there a time frame you’re looking at?
Trisha: It’s just really when the insurance starts moving and I know I have approval, and then, when can I fly my mom out here?

Rachel: That’s so smart. I don’t know how I would have done it without my mom.
Trisha: The insurance is the big hurdle for me. You have to deal with the after-math of the prophylactic mastectomy too, more than just the physical and mental issues; the financial issues, the billing issues.

Rachel: Okay wrapping up…do you have any words of wisdom?
Trisha: Don’t second-guess yourself and go with your gut!

…Well, you heard the girl! Go with your gut! Don’t let other people make your decisions for you. You are your own advocate!

Rachel’s interview with BRCA+ Playboy-girlfriend Trisha Frick, part one

Last month, I had the pleasure of visiting Trisha Frick at the Playboy Mansion. Trisha is one of Hugh Hefner’s girlfriends and has lived at the Playboy Mansion for almost a year. She gets to go to awesome parties and dress up all the time; she has access to a gorgeous swimming pool and what seems like an entire zoo at the Mansion; and she has developed quite the fan-following on Twitter and the Internet in general (I KNOW some of you have found my blog by typing “Trisha Frick” into Google!)

But beyond all that, Trisha is something more: she is a young, BRCA+ woman with a strong family history of breast cancer. While her daily life seems glamorous and fun, she struggles with the same troubling concerns that many other high-risk women face. Breast cancer has affected her life in ways to which many of us can relate. And like many of us high-risk women, she is taking the initiative to undergo a prophylactic mastectomy.

During my visit at the Playboy Mansion, Trisha was gracious enough to let me interview her for Ticking Time Bombs. I apologize for the lack of organization in the interview; I didn’t come prepared with questions, and so we ended up having more of a conversation than a real interview! It’s over 2,000 words, so I’ve divided it into two parts.

This interview isn’t meant to be about Trisha as she relates to Playboy; it’s meant to be another BRCA+ woman’s story. It’s another opinion, another perspective, another experience. We can all learn about our own health struggles by hearing from other people. So, without further ado, I give you part one of my interview with Ms. Trisha Frick!

Trisha and me before dinner at the Playboy Mansion the evening of the interview.

Rachel: Tell me about your family history of cancer, more specifically breast cancer.
Trisha: My great-grandma, grandma, and aunt died of breast cancer; and my other aunt had breast cancer. One first got breast cancer when she was 34. My aunt who died of breast cancer had the BRCA gene mutation but she didn’t want to get tested until she died, because she didn’t want to find out. So we all found out after she died, which was sad.

Rachel: So even though she had breast cancer, she still didn’t want to get tested?
Trisha: She didn’t want to get tested…and I find that out a lot, through talking to other people. Even though they have breast cancer, they don’t want to find out for their family. And it’s really weird to me; you’d think you’d want to find out for your family. That way they can get help and prevent themselves from being in the same position.

Rachel: That’s interesting. I know when I find out I was positive for the gene mutation, my mom texted me saying how sorry she was…and I was like, “chill…you didn’t have the choice.”
Trisha: My mom was the same way. She feels very guilty for me having it, even though it came through my father’s side. A lot of people don’t understand that it can come from either the mother’s side or the father’s side.  And so even she feels guilty for me having it, and I’m like, it’s not your fault, forgive yourself. And I think a lot of people don’t want to get tested because they don’t want to feel like they gave it to someone else.

Rachel: I know you had said to me before that you don’t want to pass this gene on, so are you really against having children?
Trisha: Until they figure out whether they can isolate the gene, I’d rather adopt a kid than have my own child. I’m not against children at all, I just don’t want to pass this gene on to a kid because I know all the worry that I’ve had to go through and my family’s had to go through. If I stop it, it stops in my family.

Rachel: How old were you when you found out about the gene?
Trisha: I found out I had the gene when I was 21. I wasn’t surprised because I knew my family history, so I figured that I had to have it. I found out I had it and it wasn’t a big deal to me. I lived in San Antonio, Texas where medical places and people weren’t as big on BRCA genes as they are out here in California. And so I was like, the first patient, the only one…the guinea pig for all of these places. So coming out to California to UCLA Medical it was like, finally, they know stuff! I’m not the only one! It was a big relief.

Rachel: Did you start doing surveillance?
Trisha: Yes. I did surveillance back in San Antonio where I had the yearly mammograms. I’ve had mammograms since I was 21, but I’m so young and I have dense boobs so mammograms don’t show so much. When I finally went to UCLA, they said that I should do an MRI instead. They only do MRIs on me once a year and forget the mammograms since my boobs are so dense they can’t see anything anyway. But going through the process of an MRI is scary, and it’s not a cheap thing. That’s my main decision to get a prophylactic mastectomy. Why go through all this surveillance and spend all this money when you can have new, perky boobs at the price of an MRI? And then the worry is gone.

Rachel: That’s how I saw it too. I either do surveillance and then I do the surgery anyway [because of cancer] and then I have to do even more and pay for even more, or I do the surgery now and not worry about any of that stuff.
Trisha: Exactly it’s like, why wait to get cancer? When you do it prophylactically, it’s on your time frame at your pace…everything is convenient for you. Versus when you get cancer, it’s like, “Oh we gotta do this and this and this now no matter what’s happening in your life.” I saw that with my aunt, and it’s overwhelming, even more than it would be if you do it prophylactically.

Rachel: When did you start seriously considering doing the prophylactic mastectomy?
Trisha: When I was at a place in life where I was comfortable with it. I didn’t want to do it before I was comfortable and before I had the right time schedule. I didn’t have cancer yet so I could postpone it but I knew I’d probably get it at sometime in my life so I might as well get it done sooner than later. It was on my time frame, not cancer’s time frame.

Rachel: How do you feel about your body image, knowing you have the gene mutation? It really messed up my body image for a while, that’s why I ask.
Trisha: I’m happy to have the surgery, per se, because then I get perky boobs again! I have double Ds now and they started to sag a long time ago, so I want them back up to where they’re supposed to be, as high as they’re supposed to be! As the years go on, they sag and sag…so in the way, it’s a good thing!

Rachel: Right. It’s like you get insurance to pay for a boob job! That’s what I tell people sometimes.
Trisha: I’ve met some women who are scared about losing sensation in their breasts…and it surprises me, because really, that’s the biggest worry, losing sensation? Are you kidding me, you might get cancer! Who cares if you lose sensation in your boobs? Mine grew too big too quickly so I don’t have that anyways. It’s not a big aspect of worry for me.

Rachel: And the way I see it given the statistics is that either way, you’re probably going to have the surgery. So you either put it off and wait to have the surgery, or you do it now.
Trisha: Exactly, and if you wait, then you’ll have to go through chemo and radiation and you’ll lose your hair. When I had my MRI done, I had an abnormal lump that turned out to be a lymph node. But during that time between finding out it was a lymph node and not a lump—the anxiety was horrible. That was the big push for me to get proactive: “oh shoot, I may have a lump.” And even though it was just a lymph node, I realized that I don’t want to feel that ever again in my life.

Rachel: I can’t even imagine how that felt because I’ve never had that feeling, but I’m so scared of it.
Trisha: Right. And once you have the prophylactic mastectomy, your risk goes down so much, back to the normal population’s. You don’t have to worry about that feeling.

Rachel: It’s not at zero, but it’s so much lower than it was before, and it’s lower than the average woman’s risk, too. Have you thought about what kind of mastectomy you want to do, nipple-sparing, skin-sparing…?
Trisha: I want to try nipple-sparing if I can. When you get cancer, you might not have the option to do it. You do what they tell you, versus, doing it prophylactically and having the choice. (Note: Trisha emailed me a few weeks after our conversation to say that she is now thinking of a skin-sparing mastectomy instead: “I have now seen a plastic surgeon who says with my family history and the size of my boobs it would be hard to save the nipple. It would be more aesthetically pleasing if he took them off. He does a really good job of rebuilding them at the end, it’s a third surgery but so worth it because when they save the nipple there is still a small risk of cancer because they have to save some of the breast tissue there.”)

Rachel: It’s interesting to hear different women talk about it. People will get emotional and defensive about their choice. But I understand the different arguments. Some women really care about getting their risk reduced as much as possible, while other women (like me) still want a little bit of themselves left. Dr. Karam [my breast surgeon] gave me the option of doing the mastectomy cut at the inframammary fold or across the nipple. And yes, I really wanted to do it at the inframammary fold because it’s prettier, but he basically told me that because I was about a D-cup, I had a lot of breast tissue so there was a risk that during the mastectomy he wouldn’t be able to remove all of the tissue. I decided to do the nipple-sparing because of the aesthetics, but I needed to suck it up and give Dr. Karam as much room to work as possible, so why wouldn’t I do the across-the-nipple scar? Yes, I’d have a scar, but I can deal with a scar. Scars fade.
Trisha: Exactly. People ask me, “Aren’t you worried about your future boyfriend not liking it?” If he doesn’t understand, I don’t want to be with him! If he can’t understand that part of my life—and that’s a huge part of my life—he wouldn’t be worth it to me.

Rachel: My boyfriend has been great. I can’t imagine how he feels about all of this. He has been amazing, and I think part of it also is that he’s had cancer in his family. He knows he’s at risk. And there are so many people like that who have a family history so they’re more aware. I really don’t think someone in the future who you start dating will be like “ohmygod you have a scar there!”
Trisha: And especially nowadays, breast implants in general are so common. And they’re typically done the same way. You have a scar no matter what you have: prophylactic mastectomy, mastectomy, or just breast implants.

Well, there you have it–part one of our interview! Check back in a few days for part two!

Trisha and Hef at the Playboy Mansion, celebrating July 4–looking good, guys!

 

A recap of Splash for Pink

Long time no post—I’ve been busy! The trip to Oregon last weekend was a great success.

My dad picked me up from work around 4:30 pm on Thursday and I was at LAX by 5:15 pm. Security was a breeze. I headed to the airport bookstore to pick up some reading material and after 25 frustrating minutes of not finding a decent title, I struck up a conversation with another traveler. He was from Australia and was headed home from a study abroad program. He recommended a book to me and we started to chat, and for some reason, we ended up on the subject of health insurance. He told me that his family has a strong history of breast cancer and that his sister might get tested for the BRCA gene.

How random, really! I gave him my blog card and asked him to pass it on to his sister. Of course I told him he was welcome to read the blog too, but his sister would probably benefit from it! (Sam, if you are reading this, thank you for the book recommendation. I finished “Life of Pi” in about five hours!)

I arrived in Portland around 9:30 pm, and Bryce’s flight arrived shortly after. My mom and her friend Arlene picked us up and we drove out to Hood River to my aunt’s house.

On Friday we went on a hike near the foothills of Mount Hood. It was beautiful—so green and lush, a welcome change from Los Angeles! I haven’t been hiking in quite a few months, so I was happy to stretch my legs.

For dinner we went to Everybody’s Brewery in White Salmon, Washington. One of the cool things about the area in which my aunt lives is that it’s on the border of Washington and Oregon. Technically she actually lives on the Washington side, but Hood River, Oregon is just a few miles away. We hopped back and forth between the two states all weekend.

On Saturday morning we drove out to Maupin, Oregon for Splash for Pink! Maupin is a tiny town on the Deschutes River that is best known for white water rafting. My uncle Pat used to be a rafting guide there. I’ve never seen the town that crowded—there were so many people there for the event!

After checking in and receiving our pink t-shirts, we met up with my cousin Justin. I haven’t seen Justin since the early 2000s, so it was a happy reunion. We ate lunch at the event barbecue, which was held at the Imperial River Lodge, a hotel next to the river.

Me and my cousin Justin. Don’t you love his pink shirt?

Each picnic table had a decorative bra for a centerpiece. The bras were designed and donated in honor or in memory of loved ones. I wish I’d known about that in advance, because I would have put together a pretty freakin’ awesome bra for my mom!

I met some representatives from the hospitals and organizations in Oregon that would be receiving proceeds from Splash for Pink. They were armed with quite a few informative pamphlets about breast cancer and breast health. I passed on my blog business cards to them to give to their patients.

I also met a lady named Deb Hart, who is a breast cancer survivor and motivational speaker. She spoke for a few minutes during lunch about her experience with breast cancer, so I found her later to chat. She was sitting with a few other women. I mentioned that I just had a double mastectomy, and all three of them jumped up and started hugging me.

It was great! I felt like a celebrity or something. I explained to them that I did my surgery prophylactically and they were very impressed. One of the ladies, Sandy, even gave me a beautiful tote bag as a gift! Sandy sells hand-woven totes made by craftsmen in Oaxaca, Mexico. My bag is pink and silver and I love it—I’ve been hauling around shoes, my laptop, my makeup, my brush, and my hair products in this bag for the last few days, and it’s very sturdy. It’s waterproof so I’ll be using it at the beach and the lake. It was a really gracious gesture on Sandy’s part! (On a sidenote, if you’re interested in buying a tote bag like mine or just want to check out the other merchandise, the company is called Abrazo Style and the website is www.abrazostyle.com).

Check out my awesome tote bag!

Once lunch was over, it was time for rafting. For the record, our official rafting crew consisted of: my mom, my mom’s friend Arlene, Bryce, my cousin Justin, my aunt Jackie, our guide Lynn, and me. We really wanted Uncle Pat to raft with us, but he has a bad back so he drove the van instead. This worked out well because he stopped and took tons of photos of us.

From left to right: Bryce, Rachel, Justin, Arlene, Pat, Shirley, Jackie

I haven’t rafted on the Deschutes in years and had forgotten how much fun it is—and how wet you get! Next time I go rafting I am definitely skipping the mascara. After just one rapid, I looked like a raccoon, so during a calm section of water I jumped into the river to wipe my makeup off.

One of the best things about rafting on the Deschutes is “riding the bull.” During some “easier” rapids (i.e. not Oak Springs, the class 5 rapid with “meat grinder” and “cheese grater” rocks everywhere), one person sits at the front of the boat, legs out over the water and hands holding a small metal ring. I’m not sure if it’s unique to my uncle’s rafting company or if everyone does it, but I love it. It’s quite an adrenaline rush (albeit a short one) and it really gives meaning to “hold on for your life!”

Everyone on the raft rode the bull at least once. I was lucky enough to do it twice. =D

Yeehaw! Riding the bull through the Elevators rapid.

Just a few minutes after we finished the last run on the river, the rain started. Perfect timing! It poured for about 45 minutes, but luckily the Splash for Pink organizers were prepared for rain. The festivities were moved under a tent. There was a live band, food, a bar, and a raffle. I really wanted to win the pink .22 rifle, but someone else got it. =( Oh well.

Splash for Pink was just a one-day event, so the next morning we headed back to my aunt’s place. We spent the afternoon relaxing and recovering from the rafting. I was definitely sore!

On Monday, Bryce and I flew home to Los Angeles while my mom and Arlene (and Madeline, the road-tripping doggy) drove back to California. Save for a long delay (three hours) at the airport on the return flight, I’d say the trip was a major success.

It was very touching to see an entire community unite in support of such a great (and personal) cause. I am certain that everyone in Maupin, Oregon participated in Splash for Pink. Many local businesses donated auction items, and other sponsors, like the rafting companies, helped make the event a reality by donating their time, space, and resources.

I certainly love my breast cancer charity walks, but hopefully my future will be filled with other innovative fundraisers like Splash for Pink. Does anyone know of any?!