Tag Archives: BRCA

At last, a surgery I can actually call “cosmetic”

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Greetings!

First off, I want to thank all of my readers for supporting Young Previvors after our Facebook trouble a few weeks ago. Our original group has not been restored yet, nor have we heard anything from Facebook about why the group was deleted. We have, however, started a new Young Previvors group. Our admin, Liz, continues to do a phenomenal job of screening all potential new members, so if you are a previvor or a high-risk young woman, consider joining us.

Things have been uneventful in my world of breast reconstruction, but they’ll pick up a bit in a few weeks. My final-final-final-last-one-I-seriously-promise-you’ll-never-have-to-read-about-it-again-unless-it-looks-ugly surgery is on Monday, February 25. Dr. Festekjian will be doing some minor cosmetic adjustments.

When I saw Dr. Festekjian at my two-month post-op a few weeks ago, I was still concerned about the difference in height between my nipples. Although they’ve certainly improved since my initial implant exchange surgery, the right nipple is still noticeably lower than the left.

At the appointment, Dr. Festekjian asked me point-blank which side I like more. I told him the left side, and to my relief, that was the acceptable answer. He can make my right side match my left side, but because of the extensive work he did on my left side during the implant exchange surgery, he can’t make the left side match the right. Unless, he joked, I get an infection on the right breast. Har har har. Funny.

In the outpatient surgery, he will lift up the right nipple and put some internal stitches in place so it sits higher. He will also add a layer of alloderm underneath my skin, to cover up the rippling. I plan to take a few days off work, but given my quick recovery from the past surgeries, I expect to be back in the office by Thursday. Watch…now that I’ve said that, I’ll have some horrible allergic reaction to the ice cubes in the recovery room and be bed-stricken for the next two months.

Okay, moving on: I have some very important and exciting news to share with everyone. I’d like to introduce you to Chester Frito Horn, my new furry child.

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He’s an 18-week-old American medium hair. I officially adopted him from the animal shelter at 11:30 am on Saturday morning, then promptly sent him across the street to the vet surgery center to have his balls removed. Sorry, bug…YOU’RE IN MY WORLD NOW.

I picked him up this afternoon and he seems to be doing just fine. Here he is, Cone of Shame and all. He is now, in my parents’ words, a consultant.

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Cat people: how can I get him to stay off of the kitchen counter? I’m scared he’s going to set his tail on fire with the pilot lights on the stove!

Have a fantastic week, everyone. Happy Valentine’s Day!

 

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!

 

My implant exchange surgery is on Monday!

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That’s right. You read that correctly: I GET MY SILICONE IMPLANTS ON MONDAY.

I’m going to be honest with you–that’s something I never in a million years would have expected to ever say, write or even think in my life. Me? Breast implants? Nah, never, not for me…but it’s happening! I’ll eat those thoughts with a fork and spoon (just not after midnight on Sunday).

After more than one year since finding out about my BRCA mutation and more than eight months since my original mastectomy, I am finally going to be done with surgery.  I almost don’t believe it’s real, but it is–two breasts, four Jackson-Pratt drains, three tissue expanders, one cellulitis infection, two falsies and many wireless bras later.

I had a pre-op appointment with Dr. Festekjian on November 8. He told me my implants will either be 700 ccs or 800 ccs, most likely Natrelle style 45 silicone. A few posts earlier I said that I probably wouldn’t get those implants because they’re very narrow, but Dr. Festekjian knows that I am most concerned about projection and they offer the highest projection. The total size of the implant (700 vs 800 ccs) depends on the width he needs to cover (13.5 cm or 14.2 cm).

At this point I’ve really stopped worrying about what size my implants will be. I trust Dr. Festekjian’s judgment completely. He did such a good job with my tissue expanders; people are always surprised to find out that my tissue expanders aren’t actually my permanent breast implants.

The night before my surgery I plan to take some photos of my chest with tissue expanders. I really want to create a visual of the different “stages” of breast reconstruction. The final stage photos won’t be ready for a few weeks since there will be swelling after the surgery.

Sigh. It’s happening. Finally.

Final fill update and implant exchange surgery scheduled

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I’m the worst blogger, I know. I’m sorry. I moved into my new apartment in September and I still don’t have Internet, but I don’t want to get it until I get a TV, which should be around November 10. For now, I have to mooch teh Interwebz off of work and my friends. But it is really awkward to post a new blog entry at work, when all of my blog posts have pictures of my boobs. It just doesn’t seem like the best idea, you know?

Let me update you on my breast reconstruction status: I had my final tissue expander fill with Dr. Festekjian on October 4. He filled each expander up to 700 ccs of saline. My expanders can hold up to 750 ccs, but Dr. Festekjian discouraged me from filling anymore. He said that the expanders already felt very firm and that the skin was tight, so more saline could be painful for me.

Stopping at 700 ccs was fine with me; I’m (at last) happy with the projection of my tissue expanders. You can’t see much of a difference between 650 ccs and 700 ccs, but here’s a comparison:

My implant exchange surgery is set for Monday, November 19, which is the Monday before Thanksgiving. I’ll be taking Monday, Tuesday, and Wednesday off work, then Thursday and Friday are vacation days. I should be back to work the following Monday.

Here’s me and my 700 ccs of saline on each side!

Last Wednesday was Breast Reconstruction Awareness (BRA) Day at UCLA Medical Center. I went with my mom and Bryce to show some love for Dr. Festekjian. I’m actually really glad we went; I didn’t think I’d learn much, but I asked Dr. Da Lio (another plastic surgeon) about the differences between silicone implants and “gummy bear” implants.

I’ve been hearing a lot about gummy bear implants lately, and I wanted to know what was so great about them. Dr. Da Lio told me that UCLA does offer gummy bear implants (a form of very dense silicone implants), but they are not yet approved by the FDA so patients who opt for them must participate in a study. He said they’re firmer than silicone implants and that they retain their shape when cut. But the negative is that they are not a perfect circle (unlike other implants); if they flip around under the muscle, the breast shape will change. They are not guaranteed to flip, but Dr. Da Lio said that upper body exercise could make it happen. I like to kayak and I want to get into weight lifting, so the risk of gummy bears flipping is there for me. Silicone implants it is!

I’ll be going in for a pre-op appointment with Dr. Festekjian on November 8. I already know that he is going to order a few different sizes of silicone implants for me, but hopefully he’ll give me some idea of the actual numbers and sizes.

Once my implant exchange surgery is done, I should be finished with surgeries. Since I had a nipple-sparing mastectomy, I don’t need to worry about nipple tattoos. But when I was at BRA Day, I met a tattoo artist named Ruth Swissa who does medical tattoos for breast reconstruction patients. Her work was AMAZING! She had a bunch of temporary 3D nipple tattoos. They looked SO REAL. She had one on her arm and if I didn’t know anything about mastectomies or breast reconstruction, I would have been really freaked out by it because it really did look like she had an oddly-placed nipple! To any of my readers who are going to have nipple reconstruction: email me if you want a few of the nipple tattoos! I snagged some and would gladly mail a few to you.

OK, I’ve been mooching off of my friend’s Internet for too long. Happy Halloween, everyone! I leave you with this picture from Saturday evening of Bryce and me. Can you guess who we are?

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!

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

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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!