Category Archives: Prophylactic mastectomy recovery

Bye Bye Boobies: Two Years Later

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Today marks the two-year anniversary of my prophylactic double mastectomy at 21 years old. Last year I had a lot to say about my one-year anniversary; this year, I’m going to let photos do the talking.

Let these photos–organized in chronological order starting with March 13, 2012 and ending with last night–serve as evidence that my life has been full, happy, and pretty much awesome since my mastectomy. If you’re considering a mastectomy or you’re in the middle of breast reconstruction right now, I hope these photos  give you confidence and encouragement for your own journey.

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Dating After a Mastectomy: DOs and DON’Ts

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

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

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

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

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

The actual conversation went a bit differently:

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

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

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

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

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

It baffles me that I'm still single.


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

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

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

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

“I could have sworn she had boobs!”

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Last night I had a very unusual, albeit humorous encounter with a coworker.

Here is some background on the incident: My company moved offices this week, from our location on Third Street Promenade in Santa Monica to a larger space a few miles away. To help us properly bid farewell to our old home, the company hosted a karaoke party at one of our favorite locales, the King’s Head. There was liquor involved.

In general, most of my coworkers know about my mastectomy and reconstruction. Last year I shared a bit about it during a “Think Pink” party, a fundraiser for a breast cancer charity walk the company sponsored. And a few months ago in a team meeting I gave an instructional presentation about running a blog, which focused on how exactly I run this blog. I made the conscious decision before my mastectomy to tell people about it, coworkers included, and they’ve all been extremely supportive and flexible, for which I am grateful.

When a coworker approached me at the bar yesterday and sheepishly mumbled “I have to tell you something,” I didn’t know what to expect. We do not work together closely, and I don’t know him particularly well, but we had talked the week before at a party, so I assumed it was related to that.

“I saw you on HuffPo Live,” he confessed. I was not expecting to hear that. Two days after Angelina Jolie’s announcement in the New York Times, I participated in a segment on HuffPost Live about my decision to have a prophylactic double mastectomy.

“Were you browsing yourself or did you see a tweet about it?” I asked.

“No, I go on the Huffington Post all the time. I saw something about Angelina Jolie and then clicked and said…’Whoa! I know her!’ and it was you!”

And now for the kicker:

“I was watching it and I stopped for a moment and thought, I could have sworn she had boobs! Last time I saw her, she definitely had boobs…And I looked around behind me but no one else was around the office but I wanted to ask them, ‘Doesn’t she have boobs?'”

I lost it. I started cracking up. After howling for a bit, I explained to him that I’ve really “always had boobs” and that I just “replaced the stuffing inside.” And I also said that my plastic surgeon obviously did a good job because he wouldn’t have known had he not watched the HuffPost Live segment.

I must applaud his courage to approach me about it. It was certainly an unusual way, but hey, why not? I’m glad he did.

But on that note, I am finally posting the links to all of the interviews I did following Angelina Jolie’s prophylactic mastectomy announcement. The morning after AJ’s New York Times column went live, I received a very early phone call from a sorority sister at ABC News, asking to interview me for a story. A few minutes later, I spoke on the phone with a woman at the UK’s Daily Mail. Then later that morning I saw an email from a friend in Germany who had written an excerpt for a newspaper about me.

The days following AJ’s announcement were pretty crazy for me. I received an enormous amount of traffic to the blog and quite a few media inquiries. Here’s a round-up of all of the publicity:

It was pretty freakin’ sweet. The on-air interview for Australia’s Weekend Sunrise was interesting; I was at the Beverly Hills studio at 3 pm on Friday, streaming live to Australia, where it was already Saturday morning. Here are a few pics:

Here I am waiting to stream into Weekend Sunrise. Notice the great "view" of Los Angeles behind me.

Here I am waiting to stream into Weekend Sunrise. Notice the great “view” of Los Angeles behind me.

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And here’s a pic a coworker snagged of me during my HuffPost Live interview, which she tweeted. I promise I was not bored, just intently listening!

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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.

Bye Bye Boobies: One year later

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One year ago today I was lying in a hospital bed at UCLA Ronald Reagan Medical Center, extremely groggy and extremely happy. Part of it was from the pain medication, I’ll admit, but most of that happiness was caused by an overwhelming sense of relief.

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Some women wait years between testing positive for a BRCA mutation and having a prophylactic mastectomy. I waited 140 days. 140 days of discontent. 140 days of suspicion. 140 days of self-loathing. 140 days of feeling like a stranger in my own body.

I went into my mastectomy on the morning of March 13, 2012 with anxiety and excitement, not knowing what would come next. I woke up in the afternoon without my breasts, but with the wonderful feeling of peace. A weight had been lifted: I wouldn’t have to think about breast cancer all the time, and I could get back to loving myself again.

One year later, I can say with confidence that I am once again glad to be me, Rachel Joy Horn. I don’t feel broken anymore, and I’m not living in fear of my body.

It’s been an interesting year, but looking back on it, certain moments that at the time felt awful were just hiccups along the way. Those Jackson-Pratt drains were horrendous, they really were–but whatever. My family didn’t care about them. My boyfriend didn’t mind them. My friends didn’t think they were weird. Despite them being a huge inconvenience to dressing like a normal human being, they didn’t stop me from having fun and being social.

At the time it was playing out, it felt as if the cellulitis infection and subsequent tissue expander removal would ruin my life. I literally sat in the hospital bed, Googling freezing-cold places I could escape to so I would never have to be seen in a swimsuit. But then I found a cotton prosthesis, and my mom made me a kick-ass mastectomy bikini with a waterproof falsie. And so I had One Ugly Summer…One Fun, Sunny, Active, Flat-Chested-on-the-Left-Side Ugly Summer.

One Ugly Summer…

Over the last year, I’ve learned that I have horrible veins and that I have fabulous friends. I’ve discovered that narcotics can give you migraines and that social networking can give you an incredible support community. I’ve realized that talking to doctors is crucial, just as talking to strangers is–you never know who understands and how they can help.

Sometimes I miss my breasts, or more specifically, my breast tissue. It’s a rare moment that I get jealous of another girl’s rack, but it happens. (I’m looking at you, Sports Illustrated cover Kate Upton.) My new boobs are not perfect…but then again, neither were my old ones. They are, however, mine, all 800 ccs and 14.2 cm of them, and they fit me. There are even glorious times when I think that I am the luckiest girl in the world for having them, like when I can wear a backless dress without a bra and not worry about sagging.

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Okay, so I’ve never actually worn this dress…but just knowing that I CAN wear it is what matters.

For all of the women going through breast reconstruction right now, I ask you to please be patient. I know that it can seem very disheartening, what with all the scars and the weird shapes and the rippling. But things will look better, just wait…and maybe ask your plastic surgeon about some nipping and tucking.

To my friends and family, thank you for the flowers, the pillows, the sweet treats, the fuzzy elephants, the magazines, the nail polish, the phone calls, the text messages, the cards, the hospital visits…the love.

To acquaintances who have reached out to me with words of support and encouragement, thank you for your courage to speak up.

To my work colleagues, thank you for understanding my circumstances and for accommodating me with such graciousness.

To the wonderful ladies online going through something similar, thank you for your bravery and for your willingness to share your experiences to help me and others like me.

One year has gone by so fast, and I know part of that is thanks to all of you. Before I know it, I’ll have had my implants for ten years and it’ll be time to replace them. But let’s not rush that. =)

 

Wrapping up 2012 and welcoming 2013

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Hi friends! I hope you all had a great holiday, whatever you celebrate. Over here at the law firm of Horn, Horn & Horn, we celebrate Hanukkah and Christmas.

It’s been more than a month since my implant exchange surgery, and I am much happier with how the implants have settled in. There is still some difference in nipple height, but I think the breasts have evened out  in size and look much more similar.

People have asked me what size I am now. The answer? 14.2 cm 800 cc–duh, obviously.

Don’t worry. I get it. Unless you’re Dr. Festekjian, that means nothing to you. It doesn’t really mean much to me, either. While Christmas shopping at Target a few weeks ago, I bought a cheap bra on a whim. I tried on three different sizes: 36C, 36D, and 38D. The 38D bra fit the best, so right now that’s my size, but I will go to a professional to be fitted soon. (And FINALLY use the Victoria’s Secret gift card my dear friend Anna gave me right after my mastectomy–whoohoo!)

I’ve been dressing up a lot and I love it. If you know me offline, you know that I prefer comfort over style. My weekend uniform consists of yoga pants, a tank top, and sneakers. Sometimes I shake things up with a sweatshirt if I’m feeling daring (or cold). But since I have these brand spankin’ new boobs, I’ve been looking for an opportunity to show them off! Luckily, this holiday season did not let me down.

At the beginning of December, I went to Vegas for my sorority sister Cami’s bachelorette party.  My favorite thing about going anywhere with sorority sisters is that we all share clothes. On Friday night, I wore one of Jennifer’s dresses and I actually had CLEAVAGE for the first time since March! Sorry, Bryce.

The next weekend was my company’s holiday party at the SLS Hotel in Beverly Hills. It was amazing. There were EEL TACOS. EEL FREAKIN’ TACOS. I used that magical Forever 21 gift card to buy a cute strapless dress for the party, and I even got to wear my giant heels because Bryce is 9 1/2 feet tall!

SLS hotel party

“Hey Bryce, how’s the weather up there?”

AND THEN…Cami and her fiance Nick got married this past Saturday! Their wedding was at the Balboa Bay Club in Newport Beach. It was a small, intimate ceremony. Cami looked beautiful! Nick is a lucky man.

I wore the pink dress I wore to my graduation dinner in May. The only difference was that this time I had two boobs! Last time I had one tissue expander and one falsie. I think I prefer the two boobs.

Sorority sisters! From left to right: Jennifer, Marissa, Cami, Danielle, Rachel, Nora

Sorority sisters! From left to right: Jennifer, Marissa, Cami, Danielle, Rachel, Nora

Clearly, I’ve come a long way in my crazy mastectomy journey. But it’s not over yet. I like my implants now. I think they are a good size and they look and feel natural. However, I’m not in love with them.

Should I go back to Dr. Festekjian and ask him to do more work on them? Maybe. Probably. But even then, I won’t be IN LOVE with them. Because I am not IN LOVE with the rest of my body! Until I am completely happy with how everything else looks, I’ll never be 100% satisfied with my implants.

So 2013 is going to be about changing my body the difficult way…without plastic. I’ve struggled with my weight all my life. (Literally, all my life. I learned over Christmas that I weighed over NINE POUNDS when I was born. HOLY SHIT.) Anyway, 2012 was one of those struggle times because of the mastectomy. Now it’s time to get back into shape.

"Stop right now, ma'am! Put the spoon down and back away slowly."

“Stop right now, ma’am! Put the spoon down and back away slowly.”

Here are some of my goals for the new year:

  • Develop some upper body strength. If my arms look toned, my implants will look better. I am going to keep seeing my physical therapist Jenni to learn how to do this safely.
  • Get my abs back. Believe it or not, for the first half of high school, my stomach was really toned. I did Pilates all the time and it really worked! Then, for whatever reason, I stopped. And on came the flab.
  • Get back into spinning. It’s my favorite workout, because it’s effective, and everyone looks like shit afterwards. I know that sounds harsh, but I’m a sweater; no, not a cardigan–someone who sweats a LOT. I hate working out at the gym next to girls with immaculate hair and makeup who look amazing the entire time. NO ONE looks good after 45 minutes on the stationary bike at a spin class.
  • In addition to spinning, I want to try more cardio. I am going to join a local gym, probably the YMCA, and I plan to take advantage of the classes offered. Dance Aerobics and Zumba both sound pretty fun to me.
  • Eat out less and cook more (good for the waistline and the wallet!). I need to learn how to cook and be more adventurous with my meals. A few weeks ago, a friend made Bryce and me enchiladas for dinner. He put spinach and mushrooms in mine because I’m a vegetarian. They were DELICIOUS. I would have never thought to put spinach in an enchilada…it was life-changing
  • Buy a castle.
  • Appear on Jeopardy.
  • Win Jeopardy.

I’m not sure yet how I am going to measure my success. My friend at work, Garineh, had a similar New Year’s resolution for 2012.  She wrote a blog post on eHow with tips for keeping a resolution. I’ll develop my actual numerical goals based on some of her advice.

One thing is for sure: once I meet my goals, I will have Michelle Obama’s arms, Gwen Stefani’s abs, Wolfgang Puck’s skills, and Warren Buffett’s wealth. (Yeah, that’s how often I eat out now and how much I plan to win on Jeopardy!) Oh and this castle.

What are your goals/resolutions for 2013? Happy new year, everyone!

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!

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

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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!

 

Back to spin classes

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The interview with Trisha Frick is coming along shortly, I promise! I didn’t really account for how long it would take me to transcribe it…we talked for over 25 minutes! But I swear I’m working on it.

I just wanted to let you all know that I finally returned to my beloved spin classes. Last Thursday I went for the first time to YAS in downtown LA. I always go to the same instructor, Elizabeth. I explained to her before class started that I was a few months out of a major surgery and that it was my first class back. She gave me some tips for pacing myself. The great thing about spinning is you are always in control of the workout, because you can adjust your resistance and speed. Plus, Elizabeth is a motivational instructor who always pushes you to do YOUR personal best–I know, that’s cheesy, but it works and it feels awesome.

I was really shocked at how well I did during that first class. I lasted the entire 45 minutes and only took a few breaks. And I felt no soreness during the days after!

This morning I woke up bright and early to make Elizabeth’s 6:15 am class. I felt great after, and I’m so glad I went. Finally, my spinning days are back!

I think it is important to note, however, that I’m glad I waited a long time before returning to spin classes. Yes, I resumed exercise only five days after my mastectomy, but walking and hula hooping (two of my other favorites) are more low-impact and less strenuous. They’re easy on the mind and the body. If I had tried to get back into spinning after only a month or so, I would have suffered a lot. My body was just not ready for it.

For other women who are recovering from surgery or considering a mastectomy, make sure you have conversations with your doctor about when it’s safe for you to resume exercise. I was annoyed with Dr. Festekjian because he kept telling me to hold off on spin classes, but I’m glad I listened to him.

And now I have some big exciting news I want to share with you all: I GOT A JOB! A REAL JOB! Okay yes, I had a job before, but I was a contractor. As of Monday I will officially be a permanent employee of Demand Media, working as an Associate Editor. To get an idea of what sort of work I do, check out this slideshow I wrote a few weeks ago for eHow.com, a property owned by Demand Media: Preparing for a Mastectomy.

I’m ecstatic about this opportunity for two reasons: First, I enjoy working at Demand Media (I started as an intern there in May 2010) and look forward to learning more about web publishing; second, I GET HEALTH INSURANCE.

My health insurance coverage will start at the beginning of July, meaning there will be no gap in coverage for me (my current insurance ends on June 30–will elaborate more in a future post). This is perfectly timed for my upcoming tissue expander replacement surgery.

Health insurance companies and their policies are a headache and I’ve definitely learned a ton about them recently. My mom is a wealth of knowledge when it comes to dealing with health insurance companies, and I’m definitely going to pick her brain for a post about BRCA, mastectomies, and health insurance.

Have a fantastic weekend, everyone! I’ll be in San Diego with some girlfriends, (hopefully) enjoying the sun.

Calming down and getting on with life

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Well, immediately following my previous post I lost eight pounds. I guess that will be my secret to weight loss…bitching on my blog!

I’m also happy to report that on Friday evening, Jeani told me to stop taking the Clindamycin antibiotic because the culture from my infection was only responding to the Doxcycline. This was good news because man, was that Clindamycin harsh! I know you all are completely over reading about my digestive patterns, but I’m pretty sure that the Clindamycin was what gave me such bad diarrhea.

Eating a real meal again is so wonderful! Om nom nom!

Not wanting to repeat the Crazy Drain Incident of 2012, I decided to lay low for the weekend. No walks or exercise, just hanging around the house being a lazy bum. I watched lots of movies and TV to the point that my eyes hurt. And let me tell you, all of that hard work paid off, because on Monday morning I got my drain removed!

What a great appointment. Really. Is it sad that a follow-up with Dr. Festekjian can make me so happy?

First he removed my drain. Then he removed my PICC line! AND he gave me permission to swim this summer!!! He said that my infection looked to be completely cleared up and that the following week he would remove the stitches on my left breast. He also did a fill on my right tissue expander, bringing it up to 475 ccs.

I’ve been going back and forth on the question of what to do with my right tissue expander: should I just let it be until I get my left tissue expander replaced, or should I keep getting my saline fills? What do you all think? I’m curious to get the visual on my chest’s potential size, but I don’t want to make this flat-on-one-side situation even more awkward.

I had him do a fill on Monday because the prosthetic boob I’m using on the left is too big…I want to even things out with the right side. It’s just a soft cotton-stuffed pillow shaped like one of the “chicken cutlets” you might use to add a bit of va-va-voom to your cleavage. It came in a pair with the mastectomy bra I bought before my surgery. I didn’t think I’d be needing either prosthetic…good thing I saved them!

Notice the prosthetic boob poking out there! And yes, my iPhone case is a photo of Madeline.

My graduation is on Friday. I was really on the fence about attending. When I first went back to the hospital following my infection I was pretty pissed about missing some senior events (Fountain Run, sorority formal). During that week of moping I tried to talk myself out of going to graduation, citing that I “missed everything else” so “why bother” going to graduation? Danielle brought up a good point, however: it’s my graduation. I’m never going to graduate from USC as an undergraduate again and though it might not seem like a big deal now, would I regret it in the future if I missed it?

OK, so she’s right, and she convinced me to attend my graduation. What I then had to worry about was my graduation dinner the following evening. What the hell would I wear?!

Dressing for my small boobs was hard (see Shopping for the Post-Mastectomy Patient). Dressing for a boob on the right and nothing on the left? OY VEY! Obviously I’m going to be using the prosthetic, but that still presents challenges with dressing. I need a dress that will enable me to wear a supportive bra to keep everything in place. It can’t be low-cut and it either has to have very thick straps or it has to be tight for a strapless bra.

After visiting what seemed like every store at the Camarillo outlets, I finally walked into J.Crew and found heaven in the form of a pink strapless dress. It’s tight enough to support a strapless bra and a prosthetic, and the fabric is thick enough to hide awkward lines or lumps from that bra combination. I feel like a ballerina when I wear it because of the color!

Hey…wait a minute…I thought you were missing a boob?!

So now it seems that things have calmed down around here. Having my tissue expander removed last week really felt like it would be the end of the world–at least the end of MY world. I was dreading summer, especially living in Southern California. But now I realize that hey, it’s just one summer. One Ugly Summer. I can deal.

Now, for all those who are wondering what I ACTUALLY look like, sans prosthetic…here are some fun pictures! Isn’t my bra great? Freakin’ optical illusion.

P.S., if you’re reading this: HI DR. KARAM!!!