The FORCE meeting, another fill, and the Pan-Mass Challenge Teen Bike Ride

Is it really Sunday evening already? Where did the weekend go?! (Note: It’s now Monday and I am posting this while at work since I don’t have access to the Interwebz at home!) Well, now’s the time for reflection…starting with last weekend!

Last Sunday I attended a FORCE meeting in Agoura Hills. FORCE (Facing Our Risk of Cancer Empowered) is an organization focused on hereditary breast and ovarian cancer. There are chapters all over the country, including a few in Southern California. Until last week, I’d never attended a FORCE meeting.

There were about twenty women present, as well as a few brave husbands. We spent some time mingling and getting to know one another. Trisha was there and since I felt like the awkward new kid, I stuck to her. But I did make some new BRCA friends, too! Finally the guest of honor arrived: Dr. Karam!

If you’ve started reading Ticking Time Bombs recently or you’re a veteran reader who hasn’t been taking copious notes on every post, you might need a quick lesson on Dr. Amer Karam. I always talk about Dr. Festekjian, my plastic surgeon, but he is only half of my mastectomy dream team (I bet you didn’t know there was such a thing!). Dr. Karam is the breast surgeon who performed the first part of my mastectomy in March, removing all of my breast tissue. His official title is gynecologic oncologist; he performed my mom’s oophorectomy in February. We Horns really do like to keep things in the family.

With Dr. Karam’s arrival, we started the actual meeting. First there was a round of introductions; most people shared their name, family history of cancer, BRCA status, and if they have had or are planning to have any surgeries. There were a fair number of women who had already undergone prophylactic mastectomies and oophorectomies, but there were also quite a few who were just beginning to consider surgery.

Check out Dr. Karam’s red shoes…he’s a breast surgeon with impeccable fashion sense. (Photo borrowed from Trisha.)

The Q&A with Dr. Karam was very random and tangential. It seemed that one person’s question would inspire a new question from someone else, and we sort of bounced around the room for a few hours going from question to question. To be honest, all of the talk about breast cancer bored me—it’s really not on my radar anymore since my mastectomy! But I did find the discussions about ovarian cancer and breast reconstruction very useful.

Dr. Karam is a fantastic resource and I think he helped a lot of women at the meeting. He knows how to explain complicated scientific concepts in much simpler, easy-to-follow ways. I felt very proud to tell people there that he was my breast surgeon! It was almost a sort of “hahaha my breast surgeon is better than yours neenerneenerneener sticking my tongue out at you” moment.

The best part of the FORCE meeting was the breast reconstruction “show and tell” at the end! I felt relieved that my tissue expanders looked similar to those of other women at the meeting. And I got to see someone’s “finished product” which made me even more excited for my implants—hers looked amazing! A few of the ladies who are considering prophylactic mastectomies were very impressed by what they saw…my tissue expanders included. I think it’s very helpful and reassuring to see that the final outcome of a horrendous surgery can look so fantastic.

On Wednesday morning I had a tissue expander fill with Dr. Festekjian. I’m now up to 650 ccs of saline on each side, and I can certainly feel more tightness. We talked about what I want in an implant. I am most concerned about projection. Dr. Festekjian mentioned that style number 45 gives the most projection, but those implants are more narrow so they usually look best on people with a small chest. He said the next best option is style number 20, which my mom has.

Just for reference, this is what a tissue expander looks like.

And this is what a silicone implant looks like.

I know for sure I will have one more tissue expander fill, putting me up to 700 ccs on each side. I could go up to 750 ccs, but I think that might be a bit too big for me. These tissue expanders are starting to get pretty bulky! Plus, I want to have the implant exchange surgery on November 19, so the final tissue expander fill needs to be six weeks before that date.

Dr. Festekjian said that he will order a few options for implants. During the actual surgery, he’ll “try them out” to determine which looks best. Gee, it sounds like we’re shopping for prom dresses!

OK, now for something completely different: I want to mention the Pan-Mass Challenge Teen Mountain Bike Ride, an event organized by my niece and nephew.

First, a bit of background on the Pan-Mass Challenge: The Pan-Mass Challenge is a bike-a-thon held every summer in Massachusetts. 100% of the money raised by riders is donated to the Jimmy Fund, a cancer research and treatment center at the Dana-Farber Cancer Institute.

My sister Wendy has participated in the Pan-Mass Challenge for twelve years, raising over $127,000 for the Jimmy Fund. This year, my niece Nicole (age 14) and my nephew Matthew (age 16) are stepping up their game by organizing the first Pan-Mass Challenge Teen Mountain Bike Ride, for 13-18 year olds.

The Teen Mountain Bike Ride will be held on October 13 at 9 am in Westwood, Massachusetts. If you know of any teenagers in the Boston area who are in need of community service hours, please let them know about the ride. It sure beats picking up trash on the beach!

Needless to say, I’m very proud of Matthew and Nicole for taking the reins on this idea. The Pan-Mass Challenge is a well-respected event in New England, and there is a similar bike ride for younger kids. Matthew and Nicole saw the need for a ride aimed at teenagers, and they’re making it happen.

Matthew and Nicole, the founders of the PMC Teen Mountain Bike Ride. Just a side note: aren’t they ridiculously good looking?

They’ve always been very receptive and caring kids. This past April, when they came to visit for their spring break, Nicole pulled me aside and asked how my boobs were doing (her words, ha!) Okay, I know that’s not a huge deal, but she’s only 14. (Actually, she was still only 13 at the time!) I was so touched and impressed that she not only understood my choice to have a mastectomy, but that she wanted to check up on me. It’s not exactly a light topic for anyone, let alone a teenager.

For more information, please visit the official page for the Teen Mountain Bike Ride, as well as this article published by a local newspaper. I wish I could be there in person to support Matthew and Nicole during this great event. There’s always next year!

 

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My first tissue expander fill is tomorrow,

and I’m SO EXCITED!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

One week after the tissue expander placement

It’s been one week since my tissue expander placement surgery, and I feel great! I went back to work today and spent a long day (9 am-7 pm) in the office, sans pain medicine.

I’ll recap what last week was like:

After my parents and Trisha left on Monday, I did a bit of reading and then decided to go to bed. Sleep, however, did not come very smoothly. The pain pump that had earlier been my best friend turned against me by making me itch. It wasn’t the same awful head itching I felt when my Vancomycin IV started in April. It was more of a general body itching, but enough to wake me up every twenty minutes or so.

The nurse gave me Benadryl but that didn’t seem to help, so around 3 am we made the decision to switch from my pain pump meds (not sure what these were) to the painkiller Percocet. I was finally able to fall asleep for a few hours around 4 am.

By 6:30 am, Mom was in my room. Unlike at Ronald Reagan Hospital where discharge is 11 am, the Outpatient Surgery Center discharge for the special overnighters like me is very early (at 6:37 am! That’s a joke for Mom). And sure enough, Dr. Festekjian was in the room by 7 am, ready to kick me out.

He gave me instructions for the week, such as when to take my antibiotics and when I was okay to shower. He also cut off my stylish ace bandage bandeau bra and took out my PICC line. And he even agreed to pose for a photo, since he’s a blog celebrity and all.

Even early in the morning, Dr. Festekjian looks dapper…unlike me.

I spent most of Tuesday sleeping since I got little sleep the night before. Bryce did come over and we lounged around watching movies. On Wednesday evening my friend Kim visited after she got off work. We had dinner and went on a walk. I started switching from Percocet to regular Tylenol on Wednesday.

On Thursday I worked from home. Luckily my manager Jerri is very understanding of this strange and often complicated medical situation, so she helped me create a work project that would be doable from home: scrapbooking.

That’s right, I was paid to scrapbook. I work as an Associate Editor at eHow.com, and one of our new products is called Spark. It’s sort of like a bulletin board for the web; you can clip photos and text from around the Internet onto one space.  My Spark boards give instructions for creating scrapbook pages in a more visual format. You can see one I finished, How to Create Graduation Scrapbook Pages.

I also took a shower on Thursday. Aw, the first shower after surgery—pure bliss. I could have showered on Wednesday, but my PICC line bruise made me nervous, so I waited an extra day to be safe.

The bruise is horrendous. It looks like I was punched in the arm by someone very large and very angry. When I had a PICC line on my right arm in April, the bruising was minimal. When I first took a good look at this bruise, it really did freak me out. But I consulted Drs. Horn and Horn and they assured me that it was perfectly normal. And sure enough, the bruise has gone down.

Yes, I took that picture today, and yes, it does still look awful after a week. But you should see the other guy!

On Friday morning, Mom and I hopped in the car and drove up to Los Angeles to the Playboy Mansion to pick up Trisha to go shopping. This, however, was no ordinary shopping trip: we were in search of mastectomy bras and cotton breast forms! After giving Mom a quick tour of the Mansion, we headed to Miss Stevens, a lingerie store.

Mom was definitely a fan of Mr. Hefner’s digs.

Miss Stevens is a store known for its wide array of undergarments to fit unusual sizes and needs. My mom bought her mastectomy bras there and the one that I eventually wore, so no doubt the ladies there are well-versed in mastectomies. However it still felt surreal for Trisha and I to walk in–two young girls in their twenties–and ask for mastectomy bras and breast forms.

The lady at the counter did not miss a beat, and immediately shooed me to a fitting room. I further explained my situation to her, and finally unbuttoned my shirt to show the differences in size. The exact current measurements are 250 ccs of saline in the left tissue expander, 550 ccs of saline in the right tissue expander.

She presented me with various options, ranging from adjustable silicone forms to small bra cup inserts. The silicone forms are always nice, but man! were they expensive. The one she showed me was at least $250! I love myself and I want to look my best, but I am not going to spend that much money just to be even-chested for a month.

I opted for two cup-like inserts. Layered one on top of the other, they give enough shape to match the 550 ccs on the right. Once I am filled up a bit more, I will only need one of the inserts. And then soon (hopefully by mid September) I’ll be even on both sides!

The inserts ended up totaling only $12; pretty good compared to the silicone option. Trisha graciously paid for my inserts as a “thank you” for taking her shopping. Her search for a mastectomy bra was a bit more difficult.

Since she has such a small frame, even the smallest sizes of the mastectomy bras would end up being too big for her after her mastectomy. Sure she could pin them to keep them tight, but that would require constant adjusting…not fun or practical!

After much debate, she ended up buying a mastectomy bra that also works as a compression bra. I think it’s Amoena #2161. My mom used the same kind after her implant exchange surgery, and I have used it too, though it can be a bit itchy so I prefer my softer mastectomy bra. But it opens in front and the stretchy fabric will stay tight on Trisha; plus it has Velcro at the bottom for drain pockets to attach.

Of course it doesn’t actually come with drain pockets, which is so bizarre to me. Drain pockets are probably the cheapest thing to manufacture; they are just little scraps of fabric with Velcro on one side! But for whatever reason, many mastectomy bras don’t actually come with them. Luckily my mother the seamstress has some ideas in mind for Trisha’s drain pockets!

On Saturday morning I drove for the first time, up to the bagel store. Later in the evening I drove all the way to Bryce’s house, which is about an hour away. I definitely favor my right side when I drive so I didn’t feel much strain.

The pain meds finally caught up to me yesterday morning. I’d been mostly taking Tylenol for pain, but sometimes at night I did take a Percocet. I ended up having a splitting headache that started around 10:30 am. I rarely get headaches that are more than just a dull pain, so this one really took me by surprise. I called Mom, almost in tears, and she told me to try to sleep it off in a dark room with a cold compress on my head. The headache was gone by 1 pm (thanks Mom!) and I am officially OFF of Percocet because that was just too painful.

It’s funny how pain medication can sometimes cause more problems than the actual pain is worth.

Today I scheduled my post-op appointment with Dr. Festekjian. I’ll be seeing him on Thursday at 3:45 pm. Hopefully he’ll give me the all-clear to start my tissue expander fills the following week!

I leave you with this picture of me this evening with the two cup inserts in: WHICH SIDE IS SMALLER THAN THE OTHER?! It’s an optical illusion oooooooohhhhoooooh! (OK cut the crap, Rachel.)

 

Tissue expander placement surgery update

Well, it’s official: I am back on track with my breast reconstruction! My left tissue expander was placed this morning.

I spent all day yesterday chugging water; I must have consumed two gallons! I hate not being able to eat or drink after midnight the night before surgery. Since I was scheduled to receive a PICC line, I knew that drinking all of that water would make no difference for my veins. It’s just a mental thing.

But sure enough, as soon as I woke up this morning, I was thirsty. My mouth felt like the freakin’ Sahara today! Just knowing I can’t drink water makes my body trick me. Argh!

I arrived at UCLA around 7:30 am and had my PICC line placed at the radiology area of Ronald Reagan Hospital. The nurse who put in the PICC, Jessica, was very sweet and approachable. We talked the whole time she was working on my left arm, making it go by quickly. The pain was minimal, just a bit of a pinch from shots of numbing medication.

After she placed the PICC line, Jessica walked me back to the check-in area and told me what I couldn’t do with the PICC line in. The best “no-no” was scuba diving…she actually told me I couldn’t scuba dive. I laughed it off, but she said that she once had a patient go scuba diving with a PICC and it got infected. I mean, really? Come on! How thick can you get?

Needless to say, I have NO plans to scuba dive.

Mom and I walked from Ronald Reagan Hospital to the 200 building and headed up to the Outpatient Surgery Center around 8:50 am. I’m quite familiar with that area since Mom had her oopherectomy and implant-exchange surgery there in February. I checked in and was brought back to the pre-op area almost immediately.

I spent the next hour sitting in bed with my attractive blue hospital gown and hair net as nurses and doctors bombarded me with questions. “Do you have any allergies?” Sulfa. “When was your last surgery?” April 30. “Did you get a PICC line?” Yes, notice the strange tube coming out of my arm.

Finally, my best friend, the man of the hour, the genius himself Dr. Festekjian came to see me. He marked up my chest like a ninth-grader graphing in Geometry class. Symmetry is good, so he wanted to give himself the best markers for placing the tissue expander! Hey, it works for me. He’s the artist and I trust his judgment!

Next I was given some calming medication through the PICC line, and then I was wheeled back into the operating room. Things get blurry from there, but I do remember thinking that the OR was very cluttered and bright. Doctors and nurses were all around me, covering me in blankets and poking me with monitors…

And then I woke up!

That’s one happy camper! Notice my stylish bra.

I think I was out for about an hour and a half. Since my procedure was outpatient, they did not give me a pain pump. BADDDDD idea. Of my now three surgeries (initial mastectomy, tissue expander removal, and today’s tissue expander placement) this was by far the most painful! My entire left side felt very heavy and there was a lot pressure. The nurses kept giving me pain meds through the PICC line, but I was not having it.

Finally, Mom took action. “How long does she have to be a 10 out of 10 on the pain scale before she can get an order for a pain pump?” You go, Mom! As soon as she asked that, Dr. Festekjian was paged and a pain pump was installed.

Once I got the pain pump I felt infinitely better.

Dr. Festekjian has me on IV antibiotics for precautionary measures, so I’m staying overnight. My room is very small and has a stunning view of a parking lot. Unfortunately there is no bathroom in my room (unlike the rooms in the actual hospital) so I have to walk into the hall to use the bathroom, but that’s okay because I want to be as mobile as possible. Lying in bed all day can get very boring and even a bit painful.

I’ll be discharged early tomorrow morning (by 7 am) and Dr. Festekjian will send me home on oral antibiotics. If all goes smoothly, he’ll start my tissue expander fills in two weeks. I think he filled me up to 200 ccs when he placed the expander, but I have to wear my lovely ace bandage bra for a while so I can’t really tell.

Trisha came to visit me around 6:30 pm. It was so nice to see her! She brought me beautiful purple flowers. Purple is my favorite color. We chatted for about half an hour and then my parents showed up with dinner for me, so we all sat around talking for a while.

Aren’t they beautiful? Thanks, Trisha!

Talking to Trisha was great because she understands what I’m going through. Her prophylactic mastectomy is scheduled for August 15, so it’s been on her mind a lot. I must brainstorm what I can give her for a pre-surgery care package!

I look like a giant compared to Trisha, she is so petite!

Trisha and my parents left about 45 minutes ago. I’m going to try to get some sleep now since I haven’t slept much today.

Thank you all for all of your support. I really appreciate the suggestions you left on my last post for evening out my tissue expanders–I’m definitely going to try some of them out!

P.S: Guess what I don’t have…DRAINS!!!! Oh, happy day!

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Rachel’s visit to the Playboy Mansion

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?