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?

National Cancer Survivors Day is today!

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:

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,

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!

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,

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.

 

What would you do if you knew you were going to get cancer?

What would you do if you knew you were going to get cancer? You don’t have it, yet—but it’s coming for you! Could be in twenty years; could be in ten. Could be in fifty years; could be in six months.

That was my situation. After my mom was diagnosed with breast cancer for the second time in September of 2011, she was tested for genetic mutations of the BRCA genes, a class of tumor suppressors that work with reproductive tissue. She tested positive for the BRCA2 gene, which is linked to an increased risk of breast cancer. As all good students who were awake for at least one Biology lecture should know, genes are passed down through parent to child. There was a 50% chance I had inherited the same BRCA2 gene mutation.

Even before I made the decision to be tested for the mutation, I knew there was a higher likelihood that I would be diagnosed with breast cancer at some time in my life. My mother was diagnosed for the first time at a relatively young age, which made me more susceptible. Since my outlook was already somewhat pessimistic, being tested for the BRCA2 mutation wouldn’t change much.

I waited almost two weeks for the results of the blood test and finally heard back on October 25th, 2011. Yes, the results were positive: I had inherited the same mutation as my mom. I was not surprised by the news but that doesn’t mean I was not upset, either. The numbers are pretty daunting:

  • The BRCA2 mutation means I have a 56-87% chance of developing breast cancer by age 70
  • It also means I have a 27-44% chance of developing ovarian cancer by age 70
  • I have a slightly increased chance of developing other cancers, such as pancreatic and stomach
  • I have a 50% chance of passing this genetic mutation onto my children

So pretty much, I realized I was going to get breast cancer…that’s how the numbers played out, and my mom’s history of breast cancer confirmed those numbers. Yep, I was pissed. For a few days there I felt like nothing in life was “important” anymore, that school and work didn’t matter because I had much bigger issues to deal with and I couldn’t possibly be bothered by the mundane, menial tasks of everyday life!

Right, clearly that’s a stupid attitude. After moping around a bit I realized I needed to get over myself and stop acting like a little drama queen. I needed to take action!

My options were as follows:

1. Do nothing now. Start routine mammograms around age 40. Hope that there aren’t any cancerous cells lurking in my body.

2. Begin yearly MRIs and mammograms at age 25, which would (most likely) catch any cancer early, making it easier to treat.

3. Opt for a prophylactic mastectomy to remove all of my breast tissue, dramatically reducing my chance of getting breast cancer

Well, you guys all know what I picked! A prophylactic mastectomy. It seems so drastic, I know, but it’s the only active route. Why would I wait for cancer to strike me when I could kick its ass right now? Although the yearly MRI and mammogram option is a smart one, I believe that it’s too passive because I would just be waiting for a cancerous lump to appear. When that lump did appear, I would end having a double mastectomy anyway, in addition to chemotherapy and radiation.

By opting for the prophylactic mastectomy, I’ve essentially lowered my risk of breast cancer to almost 0%. And there are more bonuses: I won’t have to go through chemo or radiation; I won’t have to put my career on hold; I won’t have to explain to my kids why I’m bald; I can pick the best time and place for me to have surgery; I’m still covered by my parents’ insurance; and most importantly, my mommy will be there to take care of me after!

My surgery was on March 13th, at Ronald Reagan Hospital at the UCLA Medical Center. I know, I know, I’m a USC traitor—but these doctors are incredible. I am so confident in them. Plus, my plastic surgeon was also my mom’s plastic surgeon when she had her mastectomy back in November, and he did a great job with her reconstruction.

Oh yeah, that’s something I forgot to mention: reconstruction! I’m not going to be flat-chested, woohoo! I’m going to be getting silicone implants. But first, in order to prep my body for the implants and to make sure they are spaced correctly, I have tissue expanders. Tissue expanders are pockets of saline that are placed underneath the chest muscle. Over time they are gradually filled up with more saline. Once they are at my “ideal” breast size, the tissue expanders will be switched out for the silicone implants.

I’m using this blog as a way to shed light on this issue. It’s a pretty niche topic; not many resources exist for women like me. Throughout my posts I’ll be documenting my progress after the surgery. I’ll also backtrack and give background on my family history of breast cancer and how its presence in my life led up to my ultimate choice to have a prophylactic mastectomy.

Thanks for reading!

September 2011–How it all started again

A lot happened between December 2000 and September 2011: middle school, high school, summer camp, boyfriends, proms, driver’s license, first job, traveling to Europe, going to university, sorority, internships…”the usual” for many girls.

I started September with a really positive attitude. I’d spent the summer in Europe, traveling around with my best friend and then taking classes at the University of Cambridge for a month. I returned to an exciting job as an Editorial Assistant at a web company in Santa Monica, a loving and genuinely fun boyfriend, and my parents’ new apartment right near the beach. Senior year at USC was about to start and I couldn’t wait to see what was in store for me.

My mom and I were driving to Costco to buy supplies for my upcoming Oktoberfest party when she mentioned that her usual yearly mammogram wasn’t so usual. There were some spots on her breast, but she said they were most likely harmless calcifications. She seemed nonchalant about the subject, so I didn’t think about it too much.

September 27th was a Tuesday, my day for classes. At the time I worked in Santa Monica about 30 hours a week and managed to schedule all of my necessary classes into one day. I was in ITP 411, Interactive Multimedia Production, when my mom called.

She left no voicemail, so I called her back when I got out of class around 1 pm. I was headed to a friend’s apartment for lunch.

“I got the results of my biopsy today. My breast cancer is back.”

felakfjewlfjel;waj 3249 vjaldsjafl jl;fjr9124012-4012 dakl;fjdal;fjl;ds jfalwejfeljaflewjflkewj; That was my reaction.

Everything she said after that was a blur. I choked back tears on the phone and eventually hung up. I had nothing to say to my mom at that point.

I was pissed. SO pissed. Mad. Angry. Livid. Whatever.

I spent an hour stewing at my friend’s apartment. She turned on an episode of Friends and I let a feeling of numbness take over. But after a while, I felt antsy. My next class started at 2 pm…there was no way I was going. I sent the following cryptic email to my professor:

I just wanted to let you know that I’m not going to ITP 300 today. My mom decided to call me right after ITP 411 to tell me some pretty shitty family news and I really don’t feel like staying around USC right now. Anyway  I just thought you should know so that you don’t think I’m just skipping class for fun. This is a pretty awkward email so you don’t have to respond to it. Sorry. I’m not feeling very articulate right now. see you next week.

I walked home and jumped in my car. I know, I know–you’re not supposed to drive when you’re emotional. But what the hell was I supposed to do at USC?

I had told my boyfriend earlier in the day that I would drive out to see him after class, so I got on I-10 East and headed toward his house. As a sort of warning I sent him an even more cryptic text message:

My mom’s breast cancer is back. I don’t want to talk about it. Just letting you know.

If it had been my choice, I would not have told him. I would not have told anyone about it.

I drove and cried. Cried and drove. Screamed, yelled, cried. Snarled even. Drove.

Somewhere along the way, the song “Walk” by the Foo Fighters came on the radio. Dave Grohl is speaking to me in this song, I thought to myself:

A million miles away
Your signal in the distance
To whom it may concern
I think I lost my way
Getting good at starting over
Every time that I return

I’m learning to walk again
I believe I’ve waited long enough
Where do I begin?
I’m learning to talk again
Can’t you see I’ve waited long enough?
Where do I begin?

The song “Walk,” besides helping the Foo Fighters to win Best Rock Song at the Grammy Awards, would become my anthem for the next few months. September had suddenly taken a very, very bad turn.


Rachel does the 3-Day

When I was nine, breast cancer didn’t mean much to me beyond knowing that my mom was sick. But as the years progressed, I started to understand more about what cancer was and how lucky our family was that my mom was healthy again.

Part of this understanding was developed from my mom’s participation in the Avon (and later Susan G. Komen) 3-Day walks: sixty miles of walking over three days to raise money for breast cancer. By 2005, she had either walked or crewed five different events.

The minimum age for participation in the 3-Day is 16, so by the time I was 15, I knew I would be participating in a walk the following year. We formed a team of walkers called 4H: Horned Hoofers for Healthy Hooters. The team consisted of me, my mom, my mom’s best friend Arlene, my best friend Lindsey, Arlene’s daughter Erin, and a woman named Barbie who worked with Arlene.

A training walk in San Francisco…Arlene got our team Hooters shirts, and we ran into some of Mom’s walking buddies along the way! (L to R: Lindsey, Rachel, Arlene, Shirley)

It was so nice to have an experienced walker (my mom) to organize all of our training walks. Our schedule was pretty consistent: during the week, Lindsey, Mom and I would try to do at least two short, local walks. On the weekend we would meet as a group to do longer walks. The location of these longer walks often varied: sometimes we would walk around San Francisco and across the Golden Gate Bridge into Sausalito; other times we’d go on hikes around nature preserves in the Bay Area.

Besides training, I also had to fundraise. In order to walk, I needed to raise $2,200. This was the tricky part, but I made it work. I wrote letters to friends and family giving information about the event and discussing how breast cancer had impacted my life. People who wished to donate could either do so via snail mail or online. My friends and family came through with flying colors, graciously helping me to pass the goal of $2,200.

The actual Susan G. Komen Breast Cancer 3-Day was in San Diego in November of 2006. At the start of our training a year earlier it seemed like walking twenty miles a day for three days was an impossible goal to reach, but by the time we made it down to San Diego, it was reality. Five to seven mile training walks had been replaced by sixteen to nineteen mile treks, and we were ready to go!

Team 4H: Horned Hoofers for Healthy Hooters (L to R: Lindsey, Rachel, Shirley, Barbie, Arlene)

The 3-Day was amazing. Seriously, if anyone is considering walking you should do it, it’s so much fun. San Diego was a great location; the walking route was beautiful! And the community embraced us…there were supporters on the sidelines, handing out popsicles, pins, beads–even wine! At night, we camped out in tents. Hot meals were provided for us, and there was even a shower truck!

Lindsey and me, keeping clean near the shower trucks.

Even though my feet hurt and I developed blisters, I kept walking throughout those three days because of the rush of adrenaline I got:

  • People were cheering me on everywhere I turned.
  • There were cute bike cops from San Jose riding alongside us.
  • If I really wanted a break I could hop into a “sweep” vehicle that was decorated with boobs and would drop me off a mile further along the route.
  • The snacks were delicious.
  • Sometimes we’d walk by the beach and see shirtless surfers…Lindsey and I always cheered.

All in all, it was a pretty good deal: raise a couple thousand dollars in order to have the time of your life!

Just chilling with some San Jose bike cops along the route!

Our team loved it so much that we decided to walk again in 2009. This time it was a bit less organized; I was at USC, Lindsey was at UCSB, and Mom and Arlene were in Northern California. We didn’t have the luxury of a consistent training schedule, but we made it work! Our new team name for the 2009 event was Doppelgangers.

Team Doppelgangers, posing with some fans along the route.

Throughout all of the 3-Day events my mom and I have participated in, our combined contribution to breast cancer research has been over $40,000. We couldn’t have done it without the support of our friends and family. All in a 3-Day’s work!

 

Mom goes for a walk

Within one year of finishing chemotherapy and radiation, Mom decided to go for a walk. A really, really long walk. (No, not a long walk off of a short pier–we didn’t drive her THAT crazy!)

In July 2001 she completed her first Avon Breast Cancer 3-Day walk. Surely everyone knows about these type of events now: if you’re one of the few people in the world who hasn’t been on the receiving end of a fundraising letter from me or my mom, you have to at least know that organizations like Susan G. Komen, Avon, Nike and Revlon are really into these “Race for the Cure” and “Woman’s Marathon” events to benefit cancer research.

For months, she trained and trained and trained. The actual walk in San Francisco was three days and 60 miles long. To put it into perspective for those non-walkers: that’s a helluva lot of walking!

She also fundraised. For every 3-Day walk (at the time it was sponsored by Avon; now the Susan G. Komen Foundation organizes the 3-Day) participants must raise a minimum amount of money that is put toward breast cancer research; in 2001, it was $1,900.

She joined a team of walkers in the Bay Area. They met twice a week to train, completing walks all around the Bay Area. At first the walks were short; 5-7 miles. But as the months passed and the 3-Day became closer, the training walks lengthened; 15-20 miles. That’s a lot of water, blisters, and pairs of socks.

The 2001 3-Day officially started on Friday, July 27th in Menlo Park, California. It ended on Sunday, July 29th at Marina Green in San Francisco with a 5 pm closing ceremony. My dad decided we would go into the city that Sunday to cheer on Mom at the end of the walk. I remember how amazed I was by the number of walkers. There were just so many people!

“The Journey Begins” photo from http://www.abekleinfeld.com/Avon%20Walk1.htm

The most memorable part of the experience was definitely the Survivor Circle. At the start of the closing ceremony, each walker was given an official 3-Day t-shirt; most were blue, but the breast cancer survivors received pink shirts. All of the survivors walked into the closing ceremony together. I knew my mom was one of them! A touching moment for an eleven-year-old.

After that first 3-Day in 2001, my mom was bitten by the 3-Day bug. For the next four years, she was either walking or crewing an event:

  • 2002: she crewed the San Francisco 3-Day
  • 2003: she walked the Santa Barbara 3-Day with my aunt Jackie
  • 2004: she walked the San Francisco 3-Day with her friend Skylar
  • 2005: she crewed the San Francisco 3-Day

That’s a lot of walking, and a lot of fundraising! Crew members don’t walk (they handle all of the behind-the-scenes work that makes the event fun for the walkers), but they still have to fundraise. Between all of these walks (and the two she did with me; see the later blog post), my mom raised $35,000 for breast cancer research!

You can put a number on the amount of money raised, but the memories a 3-Day walker has from the event are priceless. Aww, cheesy, I know.

For further reading about the event, take a look at these two articles from 2001 in which my mom is quoted:

Training together for 60-mile trek from the Pleasanton Weekly

Sole mates band together for breast cancer walk from the SF Chronicle (I see what they did there with the title hahaha)