Dating After a Mastectomy: DOs and DON’Ts, part two

Welcome to the second installment of Rachel Joy Horn’s tried-and-true-and-possibly-resulting-in-a second-dinner-invitation DOs and DON’Ts of dating post-mastectomy. Since writing my first post in November, I am still single. So maybe I have no clue what the hell I’m talking about.

A perk of being single is bringing my best friend to the company holiday party.

At least I had a really sexy date to the company holiday party…my best friend Jennifer.

Moving on…let’s start with a don’t:

DON’T get into the nitty gritty details of your BRCA mutation, of your surgery, of your breast reconstruction—whatever it is you’re discussing. I’m not encouraging you to avoid it and I’m certainly not asking you to lie, but there are some details you can share, and there are some that you might consider keeping between yourself, your family and your doctors.

If a guy wants to know about my BRCA mutation, I give him a quick overview of how I came to be tested for the mutation. I don’t focus on the exact meaning of a BRCA2 6056delC mutation (which I’d be lying if I said I fully understand), nor do I obsess over the statistics associated with a BRCA mutation. Instead, I try to deliver the details that make the most sense to understanding why I’d elect to have a prophylactic mastectomy.

When it comes to talking about the actual mastectomy surgery, I start with a basic “I replaced the stuffing on my boobs.” I then elaborate with a much more scientifically backed “I took out the potentially bad tissue and replaced it with implants.” (I think that’s what they write in the medical journals, right?) I avoid discussing the thrilling experience of emptying the bloody goo out of my Jackson Pratt drains, the pathetic feeling of not being able to lift myself up out of bed to shuffle to the bathroom, and the crippling fear of “Oh my god, are my nipples going to make it out of this alive?!”

As one might expect, the breast implants are what usually interest guys the most. Often they assume that I could pick any implant size I want, so I politely correct them (read: laugh in their face–hahaha, you dumb fool!) and let them know that there is a sort of science involved with selecting, based on factors such as a woman’s natural breast size and chest width. They then usually want to know if I “upgraded,” so to speak, at which point I say that I wear about the same bra size I did before my mastectomy.

And this is what a silicone implant looks like.

Ooo, implant. Squishy squishy.

Most of my concerns about oversharing stem from not wanting a guy to think I’m fragile or broken in some sort of way. I also worry about encountering queasy types; call me old school, but I wouldn’t want a date to pass out in the middle of appetizers. So instead of getting too detailed, I make an effort to highlight certain information about my surgery:

DO stress the positives. The biggest and most obvious positive is of course the dramatic reduction in breast cancer risk. But in my experience, there have been additional perks (bahaha pun) to the mastectomy and breast reconstruction.

Before my mastectomy, my wardrobe decisions were dictated by an evil overlord known as The Bra. Support was the name of the game, and if an outfit couldn’t be worn with a bra, it wouldn’t be worn at all. I was often forced to pass up halter tops and strapless dresses, or worse: I’d have to decide between chunky bra straps sticking out of a backless dress, or concealing all of it with a sweater. Talk about a Sophie’s Choice. These days, I can wear backless dresses and halter tops like it’s nobody’s business. My wallet sobs, but my wardrobe has never been happier.

Look Ma, no bra straps!

Look Ma, no bra straps!

If a guy has a sense of humor, I don’t hesitate to bring up the tummy tuck possibility. Using my mom’s mastectomy and breast reconstruction as an example, I talk about how, if I gain enough weight in the future, I could replace my breast implants with stomach fat. This is definitely a glamorization of a DIEP/TRAM flap procedure, and I don’t mention the arduous recovery process, which I saw firsthand with my mom, but hey—it could be seen as a positive. My mom is living proof of this, what with her new boobs and flat tummy. Where I notice a guy losing interest is when I mention “having fifteen kids and completely letting myself go so I gain enough weight to have big ol’ jugs.” Apparently guys don’t like that? Who knew?

Geez, Mom, put those things away before you take someone's eye out.

Geez, Mom, put those things away before you take someone’s eye out.

My final perk is, you might have guessed, visiting the Playboy Mansion. (It seems I rely on this topic a lot when dating…thanks, Trisha.) It certainly is a rare experience, and I’ve found that for some odd reason, men have a lot of respect for Hugh Hefner. I’m not sure why. Now unless you’re all holding out on me and you’ve been visiting El Mansion with your glorious implants, too, I’m going to assume that we don’t have that story in common. But that doesn’t mean your mastectomy hasn’t come with any unexpected perks. Were you interviewed by a news station and you’ve achieved a degree of local celebrity? Did you get a kick-ass new tattoo in honor of your surgery? There might be a silver lining to share after all.

Welp, it’s late and I’m tired, so I think I’ll sign off now. Must log into Tinder and remind myself why being single might actually be a good thing. #guysinLA #areallactors #wouldyouliketoseemyheadshot #crazycatlady?

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A reflection on Mother’s Day

I woke up this morning thinking about my mom and everything she’s given to me. She gave me heart-shaped chocolate cakes every year on my birthday. She gave me hand-sewn Halloween costumes, from the Little Mermaid to Marilyn Monroe. She gave me Harry Potter books, shipped to me at summer camp on the day they came out.

She gave me a love for painting and a thirst for writing. She gave me the drive to make everything I do just a bit more special. She gave me confidence.

She gave me blue eyes. She gave me hips. She gave me big feet.

She gave me a BRCA gene mutation.

textfrommom

“I have always wanted to give you everything and it makes me sick that i gave you something so awful without even knowing it. i love u babe.”

That was the text my mom sent me on October 25, 2011, after I told her over the phone that I had tested positive for the BRCA mutation. We had gone out to lunch earlier that day; I knew the results during lunch, but I couldn’t muster the courage to tell her. So I waited until that evening.

I guess she was right; she did give me “something so awful.” But she didn’t intentionally give it to me…she didn’t handpick my genes. It just happened.

And you know what? Whatever. It’s awful, she’s right, but in a way…it’s not.

She gave me a BRCA gene mutation, because one of her parents gave it to her. But by testing for the mutation and sharing her results with me, she gave me an extra shot at life, too.

Without her positive test result, I would have never heard of the BRCA genes, and I would have never been tested. What could that have meant for me in the future? Well, my mother has had breast cancer twice because of her BRCA mutation, so you do the math.

She gave me a BRCA gene mutation, but she also gave me the ability to control something about my future.

It’s Mother’s Day, and I feel fortunate to have such a wonderful mother. I love to see the universal appreciation for moms. Moms are awesome.

I hope that no other BRCA-positive (or genetic mutation-positive) mothers ever feel guilty the way my mom did when she found out about my mutation. It was heartbreaking to read that text, to know that my mom felt as if she had done something to hurt me. My mom has given me and continues to give me so much–surely this one hiccup could do nothing to diminish a lifetime of love.

Happy Mother’s Day, everyone.

Memorial Day weekend and the completion of my bikini!

I’m sorry it’s been over a week since I’ve written. Not much happened last week, besides going to work each day.

HOWEVER…last weekend…well, that was awesome!

On Thursday I left the office at 1 pm and met Bryce, Danielle, and Danielle’s boyfriend John at my house at USC. Bryce’s best friend (also named John) and his girlfriend Wdee also met us there. Around 2 pm, after packing the cars, we all got on the road to head up to Camp Horn in Northern California.

Camp Horn is our home away from home, our sanctuary in the Sierras, our lair by the lake. It’s located in Pine Mountain Lake, a gated community within the town of Groveland that’s situated just 26 miles west of Yosemite.

The Memorial Day trip to Camp Horn had been planned for over two months, but after my tissue expander was removed, I started to really dread the idea of going up there. Sure, Danielle and Bryce said that we didn’t have to go swimming or kayaking in the lake, but I just knew I would be miserable staring at that beautiful glassy water.  I was almost ready to call off the trip. That was until the idea for my bikini was born!

Once I realized I could still enjoy the water even without my left breast (thank you, Waterproof Falsie), I was so excited for our trip. And really, it was everything I wanted it to be.

The first thing I did when I unlocked the door to Camp Horn on Thursday night was try on the bikini…and ohmigawd, it was perfect. Seriously, my mom is a genius. I was so so so so so so happy with how it looked that I wore it around for the next hour.

Here’s me in my awesome bikini! Can you even tell that I’m missing a boob?!

The thick straps on the bikini were very supportive so the Waterproof Falsie didn’t sag, and you couldn’t even see the pocket it sat in because my mom did such a good job with the sewing.

When I went in the hot tub, the Waterproof Falsie bubbled a little bit (tehehe) but only as much as any bikini might bubble from air build-up. And once I hung it up after getting out of the water, it only took a few hours to dry! The bead system on the Waterproof Falsie works very well. I highly recommend it for any post-mastectomy ladies who are looking for an inexpensive waterproof prosthesis!

Hot tub time!

The weekend was filled with lots of food (the boys love to barbecue), some gambling at the local Indian casino, a visit to Cover’s Apple Ranch, tons of karaoke (“A Boy Named Sue,” anyone?), a few games of beer pong, daily hot tub soaks, a rifle shoot-off, five caught fishies, and my favorite activity: kayaking!

Look at me, kayaking like a mad woman on Pine Mountain Lake!

For the first few days, the weather was rather cold and drizzly. But on Sunday the clouds broke, the sun came through, and the temperature got hot! We threw the blue kayak (named Prospero) into the truck and brought it down to the beach. My mom’s pink sit-on-top kayak was already down there. Bryce and I kayaked around the lake twice on Sunday. I spent almost an hour and half on the water.

I’m very happy to report that my arms and upper body didn’t hurt at all from the kayaking. I was concerned that the mastectomy would limit my range of motion for paddling and that it would affect my stamina. Much to my pleasant surprise, I was fine out on the water, and the next morning I had no soreness in my upper body. Yay!

All in all, the weekend was awesome. The only downside is that I have a wicked sunburn on my stomach and thighs. Naughty Rachel! I really need to start taking sun protection seriously. Does anyone have a recommendation for spray-on sunscreen that is high in SPF and non-comedogenic? I have oily and acne-prone skin, so I need to find something that won’t clog my pores. I have a good sunscreen for my face, but I want to find a product that is easy to apply for body coverage.

On a closing note, I want to take a minute to speak to any ladies out there who have lost an implant or a tissue expander after a mastectomy. I know it looks super awkward right now, being completely flat-chested on one side—but don’t let it stop you from doing what you love and being who you are. Get creative with your appearance and your solutions. If I hadn’t remembered how talented my mom is at sewing, I bet my awesome weekend swimming and kayaking would have never happened. If I hadn’t explored my options (such as visiting the kind ladies at Intimate Image who set me up with the Waterproof Falsie), I would still be cursing at the idea of putting a cotton prosthesis into a bikini top.

It sucks right now, I know. But remember that this struggle is really just a little hiccup, and you’ve got to do what you can to make it better for yourself.

Here’s what the bikini looks like from the inside, with the pocket sewn in and the prosthesis inserted.

 

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!

 

November 2011: Mom’s mastectomy

Following Mom’s second breast cancer diagnosis in September 2011, she was tested for a BRCA mutation. She tested positive, explaining why she had been targeted by breast cancer twice in only twelve years.

Twelve years ago, in 1999, she was given the choice between a mastectomy and a lumpectomy. Twelve years ago, she didn’t know about the BRCA genes; not many people did, since the BRCA genes had only been discovered about five years earlier. Why have a mastectomy when the cancer tumor could be removed, and any remaining cells could be attacked with chemotherapy and radiation? A mastectomy meant losing her breast and dealing with even more surgery; a lumpectomy seemed like a much easier solution. So she had a lumpectomy.

Twelve years later, it was obvious that a mastectomy would be the smart choice for dealing with this second case of breast cancer. Her BRCA mutation meant that any breast tissue could turn lethal; having a lumpectomy might only be a temporary stop to breast cancer.

On November 9, 2011, we drove over to UCLA Medical Center at the crack of dawn for the mastectomy. Mom had showered and braided her hair the night before and was in all around good spirits. The three of us (Mom, Dad, and me) waited in a small pre-op room. Throughout the next hour, various people popped in to say good morning and explain any last minute surgery details: We saw her breast surgeon, Dr. Helena Chang; her (and later my) plastic surgeon, Dr. Jaco Festekjian; and many members of the anesthesiology team.

Here we are before Mom’s mastectomy…notice her braids! Smart choice.

Mom’s breast reconstruction, done by Dr. Festekjian, was a combination of a DIEP Flap procedure and a tissue expander insertion. Fat tissue from her stomach was used to create a left breast (the DIEP Flap procedure). This was necessary because her left breast, which had been radiated twelve years before, could not support an implant. Some women are able to use the DIEP Flap procedure to recreate both breasts, but Mom was too skinny for that! A tissue expander (like mine!) was inserted under the muscle of her right breast.

Dad and I sat in the hospital waiting room for hours during her surgery. A television screen monitored the progress of each patient, tracking if they were still in surgery or if they had been moved to a recovery room. After more than eight hours, Mom was moved from a recovery room to a hospital room. We were finally allowed to see her.

As expected, she was very drugged up and was also having problems with nausea. But she’s a trooper, and the next few days were easier. I tried to visit her each day after work or school, bringing her food or small gifts. One present was a 20 Questions electronic game. We had a lot of fun with that one, and her nurse was delighted because she had recently purchased the same toy for her grandson but had no idea how to use it! It’s a good thing I was there to teach her. =P

The 20 Questions toy!

After Mom’s mastectomy, her breast tissue was sent to a lab to be biopsied. Since she already had breast cancer, they studied the tumor to determine the next course of action. We were all delighted when Dr. Chang called to say that the tumor was very small and contained, meaning that chemotherapy would be optional! Yahoooooo!

Since it was Mom’s choice and she had already gone through the trauma of chemotherapy and radiation once before, she opted to forgo the optional extra treatments.

Mom, relaxing at home in bed in the days following the mastectomy. Note the Stuffed Usurper, a stuffed animal version of our dog Madeline, who was on vacation in San Diego with her auntie and uncle.

Over the next few months, Mom returned to Dr. Festekjian to have saline inserted into her tissue expander. She also started to see Dr. Amer Karam (my breast surgeon…isn’t he cute?!) about having a prophylactic oopherectomy. Dr. Karam is a gynecologic oncologist and breast surgeon–a true Renaissance man!

A BRCA mutation is not just about breast cancer; it also means an increased risk of ovarian cancer. Since Mom went through menopause already, removing her ovaries (an oopherectomy) was a practical decision.

The timing worked out that Mom’s oopherectomy could be at the same time as her implant exchange surgery, on February 27, 2012. Dr. Festekjian swapped out the tissue expander on her right side for a permanent silicone breast implant. He also took care of a few aesthetic issues associated with the DIEP scar. Dr. Karam performed the oopherectomy.

Since both surgeries were more minor than the mastectomy, Mom was able to come home later that afternoon…and I was able to go to Vegas with my girlfriends the following weekend without worrying about her, whoohoo!

Her recovery has been great since both surgeries. When she regained strength in her upper body, Mom joined the LA Pink Dragons, a dragon boat team of breast cancer survivors. She rows with them twice a week in Long Beach, and she loves it!

Physically, she looks HOT. The DIEP Flap procedure was in essence a tummy tuck, and her reconstructed breasts are slightly bigger than before, making her a large B cup/small C cup. If you’re going to get cancer, you might as well reap the benefits of fighting it off…get a rockin’ bod!