Tag Archives: Breast cancer

My first tissue expander fill is tomorrow,

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and I’m SO EXCITED!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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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!

 

A recap of Splash for Pink

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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?!

Rachel’s visit to the Playboy Mansion

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Before I start telling my story, can we all take a moment to appreciate the irony of the fact that I managed to make it all the way to the Playboy Mansion with only one boob? Some girls spend thousands on plastic surgery to get there—but me, I don’t even need to have a complete rack!

Okay…who am I kidding? When this is all said and done, I’ll have spent thousands on plastic surgery, too.

Onto the story:

As I mentioned in my teaser post, I received an email a few weeks ago from a young woman named Trisha who had gotten my contact info from my genetic counselor at UCLA. Trisha is 27, BRCA2+, a volunteer at the Revlon UCLA Breast Center, and a girlfriend of Hugh Hefner’s.

Um…wow! In her first email, when she mentioned she lived in the Playboy Mansion, I thought it was a joke. I really thought that someone was screwing with me. So I looked her up…and found the Twitter account of a girl named Trisha Frick who lives at the Playboy Mansion. I then emailed my genetic counselor, who confirmed that she had given my contact info to her.

“SHE’S REAL!” I squealed to myself when I saw the confirmation email. I was pretty excited.

But then I had to stop myself and take a step back. Yes, it was awesome that someone who lived in the freaking PLAYBOY MANSION wanted to talk to me. But she didn’t want to talk to me about that—she wanted to talk to me about my experience with a prophylactic mastectomy. Even though she was totally beautiful and lived in a kick ass house and went to awesome parties, she was also very much like me: a girl with a BRCA mutation who was trying to make sense of her high risk of breast cancer and figure out the right plan for her!

I emailed her back, trying not to sound too giddy or star-struck, and we soon started exchanging emails about our experiences with breast cancer and the BRCA mutation. After a few messages, we decided to meet up. And much to my delight, Trisha invited me to visit her at the Playboy Mansion for Sunday Funday!

Dear readers, please take this gem of wisdom to heart: if you ever find yourself in the fortuitous position of going to the Playboy Mansion, check your GPS twice. Please.

I left my boyfriend’s house in Glendora at 12:45 pm with the goal of being at the Playboy Mansion by 1:30 pm. Using the street address Trisha had emailed me, I plotted a route on my iPhone’s GPS and took off.

35 minutes later, I exited the freeway in an extremely seedy looking part of Eagle Rock. It really didn’t seem like the kind of place the Playboy Mansion would be located. For those of you who are familiar with the USC area, it looked like Vermont Avenue, with little taco stands and barbershops and cop cars everywhere.

After driving past the red destination marker on the iPhone map and still not seeing a luxurious mansion, I called Trisha. Trisha had never even heard of Eagle Rock.

…I was temporarily lost.

Trisha did mention that the Playboy Mansion is around UCLA. Hahaha, yep, I know where that is! Just for kicks, I manually entered the Mansion’s street address into my phone instead of clicking on the address through an email. And sure enough, a location in Holmby Hills near UCLA showed up.

I’m not sure why my iPhone’s navigation was being so rude, but it didn’t deter me from reaching my goal. I managed to arrive at the Mansion around 2:15 pm.

My first reaction upon seeing the Mansion as I drove up the steep driveway? “HOLY SHIT.”

The front of the Playboy Mansion

Most of you know that I am obsessed with castles. The Playboy Mansion looks like a European castle. It was love at first sight.

I parked behind a group of other cars and a valet took my keys. I stared around at my surroundings for a moment, dumbstruck and trying to take it all in, and then Trisha came to retrieve me.

It was really nice to meet Trisha in person. She is so sweet and so pretty, and I felt quite comfortable around her. She immediately took me out to the pool to meet some of her friends and Hugh Hefner.

Yep, I met Hef. And he was very kind and welcoming…he even posed for a photo with us! You gotta love his swag.

Who else could pull off that captain hat?

Trisha brought me over to a lady who handled logistics to sign in and order food. There was a set lunch menu with quite a few yummy-sounding options. I ordered the grilled cheese and a salad.

We then embarked on the grand tour. If you ever get the opportunity to take the grand tour of the Playboy Mansion, I highly suggest it.

First there’s the zoo! There are koi fish, peacocks, parrots, bunnies, and three species of monkeys…three! It’s insane. Just insane. That’s all I can really say.

Then there’s the game house. The game room itself has a pool table and tons of pinball machines and arcade games. Then there are a few small rooms and bathrooms off to the side, including a room with a very VERY squishy floor. (I wonder what they use that for? ;) )

The inside of the game house

From there we saw another small house that was more like a green house than anything. I guess the proper term would be “aviary” because there were birds galore in there. My favorite was the toucan.

As we walked along the grounds, I also saw the tennis courts and a few different statues and busts that looked Grecian. The flowers in the garden were beautiful. Whoever takes care of the grounds does a wonderful job.

Near the pool is a building with bathrooms, a gym, lockers, and a sauna. Outside of that building, directly next to the pool, is the bar. The bartender whipped me up some kind of fruity rum drink—delicious!

For a while we relaxed by the pool as I snacked. The grilled cheese was petite and well-made—it really hit the spot! It was a good time for me to talk to Trisha and meet some of her friends. All of the girls I met were very kind and interesting. When Trisha and I explained how we knew each other, they were genuinely curious to know more about the BRCA genes and the mastectomy. I even passed out a few blog business cards!

After I was done eating we got ready to swim. We ordered a few beers (Heineken for me) and headed into the grotto. It was awesome. Seriously, if I’m ever rich and decide to build a pool at my house, there will definitely be a grotto!

Half of the grotto is a hot tub, and the other half is normal temperature. There are two large cushioned areas outside of the water, and there’s a speaker system. In between some of the rocks on the ceiling are stained glass decorations.

Me and Trisha, inside the grotto…so legit!

The water was very pleasant. I really like the idea of a grotto; you can enjoy the water without being exposed to the sun. Now that I’m trying to prevent cancer in all forms, I worry about that stuff!

After spending half an hour in the grotto, we got out and changed back into our clothes. Then Trisha and I took her dog Denny for a walk around the neighborhood and down to the park. Denny is soooooo cute. He’s a Husky/Shar-Pei mix. During our walk, Trisha let me interview her for the blog. We talked for over 25 minutes, all about the BRCA mutation and her mastectomy plans. I’m really excited to transcribe the interview from my phone for you to read!

Trisha and me before dinner inside the Mansion

Dinner was around 5 pm. It was buffet-style. I was quite pleased with the selection of vegetarian-friendly items, especially the entire platter of sliced tomatoes! The food was delicious. The dining room seemed to me to be crowded; there were quite a few girls there (some who lived in the Mansion, others who were visited like me) and some older individuals who were friends of Hef’s. Bandleader Ray Anthony was there, and apparently he is 90 years old but he didn’t look a day over 75! (I think that’s a compliment, right?)

Another one of Hef’s friends was passing around a riddle for people to solve. I don’t know how I did it, but after looking at just the first two lines I was able to solve it. He seemed quite amazed that I guessed it and asked me what my IQ was! Ha. He even told Hef’s brother that I was the only one who answered it correctly! I guess all of that Jeopardy pays off?

Hef came into the dining room around 6:15 pm and took a few pictures with Trisha and the other girls. Then he announced that it was time for the movie. The last part of the Sunday Funday festivities each Sunday is a movie; on this particular occasion, they were screening the new Snow White and the Huntsman with Charlize Theron and Kristen Stewart.

I decided not to stay for the movie, so Trisha walked me back out to the valet to get my car. We exchanged hugs and goodbyes and she promised to keep me posted about her decision regarding a prophylactic mastectomy.

All in all, it was a fabulous day. I am so grateful that Trisha invited me, and I’m also really happy to have met her. I admire her confidence and respect her decision to pursue a prophylactic mastectomy, and I’m excited to post my interview with her because I hope that other BRCA+ and high-risk women will gain some insight from what she has to say.

Check back in a few days to read the interview!

You have to admit that I look pretty good at the Playboy Mansion, right?

National Cancer Survivors Day is today!

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Today is National Cancer Survivors Day, and I’m reminded today of how fortunate I am to have some special people in my life who have kicked some cancer ass: my mom; my boyfriend’s father Tim; my cousin Robbie; my friend Teresa; my dear friend’s mother Natalia; all of my wonderful blogging buddies and forum friends. And I’m sure there are more people I’ll remember as the day goes on!

Watching all of you inspired me in part to go through with my own prophylactic mastectomy. I am amazed at how many cancer patients turned their own painful struggles into stories of hope, courage, and success. You guys rock!

I think it’s time to deal with the big bad question:

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Why? Why would I have a mastectomy, as a perfectly healthy 21-year-old?

I’ve been avoiding this post for a while–not because I didn’t want to answer the question, but because I didn’t know where it would belong. It seems like something I should have written about a long time ago, before my surgery. And I did write about it, for myself, to justify the decision. But now I want to “go public” with my thought process, because people are right: removing all of my breast tissue at a young age is absolutely ludicrous.

This time last year I was driving home from work, anxiously awaiting the debauchery that would be the following evening: my 21st birthday. At that moment, I was just a normal college student. I was so excited to finally be free of my crappy fake ID, but before that magical first legal drink, I would have to make sure my camera was charged, my hair was straight, and my clutch was packed with the necessary lip glosses and eyeliners.

Celebrating my 21st birthday last April. From left to right: Marissa, Danielle, Rachel, Katy.

Six months later, everything was different. I felt nothing like that girl who was excited to go out to bars with her sorority sisters to celebrate another year. My BRCA test results were in, and it seemed that I would never be the same again.

I was suddenly resentful of my body. I felt so betrayed! My relationship with my body had never been perfect; there were certainly a wonky few years during high school. But since starting college, I’d finally become comfortable being me. And then, when things seemed to be going great in life, my body just threw me under the bus. “Oh hey! You’re gonna get cancer!” No, I guess it wasn’t my body–it was my DNA. That’s what made it even worse, at least at the time: the very essence of my being was flawed.

Oh no…not an awkward photo from high school!

No one could see that I was broken, but I knew it. I just didn’t know when it (cancer) was going to strike. My breasts were–you guessed it–ticking time bombs (oh so that’s where the name comes from!) Every time I caught a glimpse of them in the mirror while changing, I shuddered. I hated them. I didn’t trust them. What if there was a cancerous cell lurking in them already?

The BRCA test results felt like a death sentence. But maybe that’s the wrong way to describe it…I never thought I was going to die…but I never thought I was going to live, either–at least not happily and cancer-free. It was a death sentence for my normal, relatively simple life. It was a sentence for cancer. I read up on the numbers, and I knew how BRCA had played out in my own life: my mom had been diagnosed with breast cancer twice. The fact that I, too, was BRCA positive meant that I was going to get cancer. There wasn’t hope that it would skip me or that I could diet and exercise my way out of it. No. If I lived long enough and had enough breast tissue, I was going to get breast cancer.

These two thoughts–resentment toward my body and belief that I would eventually have cancer–were what drove me to my decision to have a prophylactic mastectomy.

I really hate being depressed. I hate hating myself. I wanted, so badly, to get back on track with my self-esteem and self-image. You can only truly love someone if you love yourself first, and I really hated myself last October when I found out about my BRCA mutation. Imagine how poor Bryce felt?

It’s true that I could have waited one year, five years, ten years–any period of time, perhaps–before having a mastectomy. And I think that if I had waited a few years, I still would have been doing it by choice, not by necessity. But I know that I would have felt so much self-loathing during that time. I was not prepared for those feelings. The drama of my teenage insecurities was hard enough; I did not want to repeat any of that. The sooner I got on with my mastectomy, the sooner I would have reconstruction. The sooner I would have reconstruction, the sooner I would love my breasts–and myself–again.

A mastectomy and reconstruction would give back what the BRCA mutation had taken: my self-esteem. But it would also give me peace of mind. Many women who are at high-risk for breast cancer opt for the surveillance option instead of surgery. They are diligent about their mammograms, MRIs, and breast exams and join special hospital programs for high-risk women.

This was certainly a choice I could have made, but it was too passive. Yes, I could screen the heck out of my breasts, but that wouldn’t stop a tumor from forming. And let me tell you: I’m a worrier. If something hurts (my eyes, my ears, the space between my toes), I go to the webMD Symptom Checker and diagnose myself (and it’s always terminal). Imagine me at a yearly MRI or mammogram? I just know I would be freaked out for days waiting for the results.

Remember when I thought I had esophagus cancer? Thanks, webMD Symptom Checker.

And the way I saw it–again, based on the numbers–was that eventually one of those MRIs or mammograms would come back with a spot. I would get the spot biopsied, and then a doctor would tell me that I have cancer. The doctor, knowing that I have a BRCA mutation, would then strongly suggest a double mastectomy, followed by chemotherapy and maybe radiation.

I would not get to pick when this happened. Cancer would not care if I had a career and children to think of; it would just strike. I would have to halt my life for surgery and a very difficult treatment; I would have to explain to my family what was wrong with me. My mom didn’t get to pick when she was diagnosed with breast cancer. It just happened to her, and at a really sucky time.

When I found out that I had a BRCA mutation, I was given a choice–the choice my mother never had. I could choose when my life would be inconvenienced. I could decide if I wanted it to be because of cancer, or because of me. I decided to stop my life for a few weeks because of me–because of a decision I made myself. If I had decided against a prophylactic mastectomy, I would have to have one at some point, anyway…and it wouldn’t be prophylactic anymore. It would be because I had breast cancer.

My brother Michael put it best in an email to me a few days before my surgery: “Doing this [a mastectomy], or not doing this, are each big decisions.  One choice is potentially fatal, and one is just fucked up.  You chose fucked up, which is clearly the right choice.”

He’s right. It is “fucked up.” It’s ridiculous. It’s upsetting. I was distraught for weeks before my mastectomy, and sometimes now, even after, I get angry and sad and insecure. But it was the right choice. I didn’t cause the stop codon that screwed up my BRCA2 gene. Nothing I ate, drank, said, watched or smelled affected it in any way; it just happened. I couldn’t control it. But now I am in control of my body and health again, and I have my prophylactic mastectomy to thank for that.

I know blogs are supposed to be concise…and that certainly wasn’t. But I hope it made sense. I hope that at least one person out there understands my decision a bit more…I hope it doesn’t seem so crazy and extreme.

I want YOU to get tested for the BRCA mutation in 20 years so you can take control of your health again, future self!

Tomorrow’s my 22nd birthday, and I’ve given myself the gift of life! So cheesy, and so true.

 

Since my previous recognition post was so well received,

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I think it’s appropriate that I write another one! It’s also quite relevant.

This one is dedicated to everyone’s favorite (okay maybe I’m just a bit biased) person: my mother, Shirley Horn! Yayyyyyy.

Here’s the backstory on why I’m writing about her today: Bryce left this afternoon around 1 pm (after cleaning the apartment and bringing me lunch, what a sweetie) and I sat around in bed for the next six hours. My body ached. Maria, the RN I have been emailing at Dr. Festekjian’s office, told me that I should rest my upper body this weekend. But the lack of movement is making everything hurt! I feel like the way I felt three days out of surgery. Meh.

The drain site on my left is also looking really infected. It’s an angry red and it’s oozing. I think it might have just gotten too loose, and so excess fluid (that should be suctioned through the drain tube) is now exiting on the outside of the tube. When I move, it hurts; it feels like the tube is stabbing me.

I lost it about half an hour ago and just started crying. I felt lonely and angry and I was in pain and I wanted to eat something but I didn’t want to get out of bed because it would hurt. I wanted to go on my computer but my eyes hurt from watching movies and being online so much these past few days. My roommate Danielle is away this weekend, and Bryce couldn’t come back over since he has to watch his dog. So I decided to text my mom.

I begged her to come over and told her she could bring Madeline (the doggy) and said that I wanted her to go with me to see Dr. Festekjian tomorrow afternoon. I was so scared she would say no, she can’t come over. I knew she was making a really nice dinner for my dad and was probably tired from the past few days (we had house guests visiting).

Imagine how happy I was when she texted me back and said “Absolutely. We’ll leave in fifteen minutes.” But then I stepped back for a minute–was I really that surprised that she agreed to come take care of me?

I know she’s supposed to be there for me because she’s my mom, but she always goes above and beyond. Last April when I had to go to the emergency room, she drove all the way down from San Francisco to be with me–even though by the time she arrived, I was already out of the hospital!

When I had my prophylactic mastectomy on March 13th, she volunteered to sleep at the hospital overnight with me. It had never even occurred to me during her surgery in November that someone should stay overnight with her at the hospital. I ended up telling her not to sleepover because I felt well enough and had good nurses who responded quickly to me, but it was still a thoughtful gesture.

The two of us before Mom’s surgery on November 9th!

After I left the hospital and returned home, she had transformed my bedroom into the perfect healing unit, moving her pillows and bedside table in so I wouldn’t have to reach far for anything. She constantly kept my water refreshed and brought me snacks in bed. Every time I showered, she helped me deal with the dressings on my drain site before and after. It’s a yucky job, but she’s always up to it!

This all coincides, you know, with her helping to take care of my dad and the blind diabetic dog! Whether she’s changing dressings on my drain sites, changing the dressings on my dad’s foot wounds, or giving Madeline insulin shots, it seems she has earned the title of Dr. Horn.

Dad has always wanted a doctor in the family–it seems that, without even realizing it, he got one!!! And she’s the best one around. She probably couldn’t have performed Dad’s cardiac surgery last February or improvised as Dr. Karam or Dr. Festekjian during my prophylactic mastectomy, but the fact that she can provide emotional support as well as medical help should make up for that. Dr. Shirley Horn is the best!

Mom and Maddy, out for a bike ride in Redondo Beach last summer. Maddy the Blind Diabetic Dog is lucky to have such a fun person!

 

OMG I took a shower!

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Most people probably don’t understand how freaking MONUMENTAL it is that I, Rachel Joy Horn, at approximately 11:40 am on Wednesday, March 21st, took a SHOWER. (This day is also awesome because it’s my best friend Danielle’s 22nd birthday…happy birthday Danielle! Now back to the shower.)

After I got my hair washed last Friday at a salon, I posted a Facebook status about how happy I was. My cousin Robbie responded with: “Next great feeling is a shower!” Boy was she right!

This is me after the shower! Note the drains attached to the shoelace around the neck.

There are two camps on showering with drains in: shower, and don’t shower. I don’t think one particular group is right; it is really a decision that needs to be made with the individual in mind. I’ve done a lot of Internet research on the topic, but I wanted to get specific approval from my medical team before I did it. I emailed my plastic surgeon’s office about it, and received approval along with some tips for showering safely:

  • Make sure the drain sites are covered with plastic completely.
  • Safety pin the drains to a shoelace and wear the shoelace around your neck so you can use your hands freely.
  • Keep the water on relatively low pressure.

With that approval, I was off! My drain sites are already protected with a plastic adhesive dressing, but Mom helped me to wrap that part of my torso in plastic wrap. This was a fail. When I got into the shower, the plastic wrap filled with water in all the loose crevices, essentially weighing everything down. I ended up taking the plastic wrap off halfway through because I was afraid water would pool up around my drain sites.

I had no trouble lifting my arms to wash my hair, which was a relief.

After the shower we decided it would be the safest idea to change the dressings around my drain sites. They seemed fine–there was no water around them–but we wanted to be sure anyway.

I feel soooooooo much better now that I’ve finally showered. Seriously awesome.

I do have to stress though that I’m glad I talked to my plastic surgeon’s office. Any potential infections in drain sites can be lethal. Getting the approval and advice for how to shower safely took away anxiety about it. If you’re in doubt about whether you can or should shower after your mastectomy, ask your doctor!

 

Dear Jackson-Pratt drains,

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I hate you.

It’s been one week exactly since my surgery, and I can say with complete confidence right now that I hate these stupid drains.

But hey–if that’s the biggest complaint I have, maybe things aren’t so bad.

What bugs about these drains is that they’re just so…limiting. For those who aren’t familiar with the nuanced terms of mastectomy, Jackson-Pratt drains are used to remove excess fluid buildup from the surgical site. On each side of my chest, about halfway in between my armpits and my hips, I have a plastic tube sewn into me. The tube attaches at the bottom to a plastic bulb that uses suction to “swallow” liquid. This is the drain.

JP drain diagram from drugs.com
This is not exactly where mine are located, but it’s a decent illustration.

Every twelve hours, I empty each drain and measure how much fluid is expelled. Once I am below 30 ccs of fluid per 24 hour period, I will be able to have the drains removed. Right now I’m at about 80 ccs per 24 hour period…so I’ve got a while to go . =(

I thought that emptying the drains would be a tedious, disgusting task. The fluid is pretty gnarly: it’s a translucent red/orange and I can see when blood clots pass through. But no, emptying them is really easy and I don’t get grossed out.

They are just annoying to live with! You can’t hide them. I have two mastectomy bras, soft bras that use hook-and-eyes to snap closed in front. Each bra has areas for attachable drain pockets, little white pockets with velcro where I put the drains. At home I usually walk around wearing just the mastectomy bra and drain pockets, or I wear a zip-up or button-up jacket with pockets and stick the drains in the pockets.

It’s going out that’s difficult. Yesterday I decided I wanted to go for a walk–but what do I wear? Do I wear a jacket and just deal with the fact that fellow walkers and bikers will think I’m some kind of mutant with bloody tubes running out of my body? Do I stuff the mastectomy bra and drains into a zip-up jacket and risk looking like a pregnant teenager? Do I wear an oversized flannel shirt and look like a hobo who hasn’t showered in a week? (Oh wait…that last part about showering is true.)

Yesterday, before my walk. I opted for the mutant alien look. P.S. look at how flat-chested I am LOL boobs.

That’s another downside. I can’t shower with these things in. Water is not supposed to get near the drain site to avoid infection. MEH. I’ve had my hair washed and I’ve been using nifty little pre-soaped disposable wash clothes to keep clean. (FYI, the Horn residence is pretty much its own pharmacy. Between me, my mom, my dad, and my diabetic dog, we’ve got every drug, gauze pad and bandage, and medical instrument you could ever need.)

I’m also scared I am going to pull them out in my sleep. For some reason, the drain on the right is different than the one on the left: the tube is not attached to the bulb with anything other than pressure from the suctioning. On the left, there is a nifty little device that keeps the two attached. Already once the tube on the right has become disconnected from its bulb. Nothing big happened–I realized it immediately and put it back together. But I’m scared that it’ll come out in my sleep and leak all over my nice clean sheets.

Leaving you with that nice image and my fears, I am going to attempt to go back to sleep. In a few hours I’ll post a really informative, well-rounded “One week out” post and we can all forget about my hatred for drains.