Author Archives: Rachel Joy Horn

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About Rachel Joy Horn

In October of 2011, I found out I had a genetic mutation that increases my risk of breast cancer by up to 87%. In March of 2012, I had a prophylactic double mastectomy. I'm 23 years old. Read my story to learn more!

Rachel’s visit to the Playboy Mansion

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

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

Onto the story:

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

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

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

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

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

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

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

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

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

…I was temporarily lost.

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

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

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

The front of the Playboy Mansion

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

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

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

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

Who else could pull off that captain hat?

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

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

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

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

The inside of the game house

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

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

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

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

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

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

Me and Trisha, inside the grotto…so legit!

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

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

Trisha and me before dinner inside the Mansion

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

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

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

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

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

Check back in a few days to read the interview!

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

My day at the Playboy Mansion–a preview!

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WOW. What a day.

I was very fortunate to spend the afternoon and early evening at the Playboy Mansion today. And what’s great about it is that I was there…drumroll please…because of my BRCA2 mutation!

Proof that I was really at the Playboy Mansion: me, Hugh Hefner, and Trisha!

A few weeks ago I received an email from a woman named Trisha. In her email, Trisha wrote that she is also BRCA2 positive and that she got my contact info from my genetic counselor at UCLA. She said that she volunteers at the Revlon UCLA Breast Center during their high risk patient days, and is in the process of getting ready to do her own prophylactic mastectomy.

Oh, and she’s one of Hugh Hefner’s girlfriends and wrote that she lives in the Playboy Mansion.

Trisha and I exchanged quite a few emails about our lives and our experiences with breast cancer and BRCA. When she invited me to visit her at the Mansion for Sunday Funday, I was ecstatic. First of all, it’s such a fun opportunity, and additionally, I was eager to talk to her more about her thoughts regarding the prophylactic mastectomy.

In the next few days, I’ll be writing more about my afternoon at the Mansion. I’ll also be transcribing and then posting an interview I did with Trisha in which we discussed breast cancer, BRCA, mastectomies, body image…everything!

Check back soon to read the interview about my awesome day at the Mansion!

Blog redesign

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I’m extremely pleased to present to you my blog redesign!

When I started this blog and came up with the name Ticking Time Bombs, I always had an image in mind of a bra made out of bombs. That is, after all, how I felt about my breasts: they were deadly bombs waiting to explode!

As the blog grew, I realized that I needed to develop more of a brand. Many times in my daily life I strike up a conversation with someone who ends up having a personal connection to breast cancer or genetic testing or who knows someone who does. I usually end up scribbling my blog URL down on a scrap of paper and hope that they don’t lose it!

I needed blog business cards to give to the people I met. But If I was printing business cards, I’d need a better URL; the generic WordPress URL is difficult to remember. So I purchased http://www.tickingtimebombsblog.com.

Then I realized that if I started giving out business cards, they would need to match the look of my blog. But I was not exactly proud of the look of the blog. Sure, it worked…but honestly, I threw together the banner in about fifteen minutes. It could be a lot better.

Through ifreelance.com, I hired a wonderful freelance graphic designer based in the UK. We emailed back and forth about all of my requests and ideas, and soon, a logo was born.

From that fabulous logo came my business cards, and finally, my banner. (Yes, that’s supposed to be me in the logo. Originally the illustrated girl was a lot skinnier; I had to ask my designer to throw on a few pounds!)

I’m very excited to get my blog business cards printed this weekend so I can start giving them out to people who might want to visit the blog.

Thank you all for supporting me throughout this journey with my mastectomy and reconstruction and the development of the Ticking Time Bombs blog. Please keep passing on the link to anyone who could benefit from reading my story!

National Cancer Survivors Day is today!

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

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

Memorial Day weekend and the completion of my bikini!

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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.

 

Bikini top update and a time frame on my tissue expander replacement

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Hey yo!

I just woke up to a beautiful morning in Southern California. After I finish this post I’m going to hop on a bike and ride along The Strand up to Manhattan Beach.

Remember a few weeks ago, when I was sitting in the hospital, bitching and moaning about how much my life sucked because I had to get my tissue expander removed? I was really, REALLY over living in Southern California at that point. I even started researching summer jobs and apartment rentals in places like Oregon, where I was convinced I would not feel any pressure to don a bikini or any kind of revealing shirt.

The view of King’s Harbor in Redondo Beach this morning from the balcony at my parents’ apartment.

Ha. Good one, Rachel. Like I could leave all of this beautiful weather and sunshine?

At the time, getting that awful tissue expander removed seemed like the end of the world. And can you blame me for feeling that way? I’m 22…I work at a fashion and beauty website…I live in Southern California. Appearance matters to me a lot, I hate to admit it. The prospect of having only one breast for an entire summer seemed AWFUL!

But it’s all about learning what works and what doesn’t. Adjustments are necessary…change isn’t all scary, I’m realizing. Okay, so I can’t get away with wearing clingy fabrics because the outline of my prosthesis will show. Well maybe that isn’t too bad…I’m finding styles that are more flattering for me. And while I used to run away screaming at the thought of wearing clothes from the women’s department instead of the junior’s department, I have to accept that I am not sixteen anymore and I have NEVER been built like a twig. Some of the clothes in the women’s department (and more importantly, in my wonderful mother’s closet!) just work so much better for me!

Which brings me to the update on my awesome bikini top (purchased from the women’s section of Target). On Tuesday, Mom and I met up for lunch after her oncology check-up at UCLA. Two miles from my office in Santa Monica is a mastectomy/breast cancer boutique called Intimate Image, so we stopped by to see what they had in terms of waterproof prostheses.

Perfect timing, because apparently they had just received a shipment of a new type of waterproof prosthesis. Its full name is the Trulife AquaFlow Triangle 630 (I think I’ll just call it “The Waterproof Falsie.”) Here are some of the fun little selling facts from the website, with notes from yours truly:

  • Molded, fast-dry spacer (…no idea what that means)
  • Breathable foam for support and structure (…ooo…support)
  • Lightweight beads do not absorb water and dry quickly (hahaha, no sponge for me!)
  • Flattering, natural profile, whether active or lying down (I like flattering)
  • Water resistant satin drawstring bag can be used to carry a wet swimsuit or other damp items (and the color of the drawstring bag is just sooo pretty)
  • Satin garment loop can be used to pin into a garment (…k…)

They only had two sizes at the Intimate Image, a 5 (equivalent to about a B cup) and a 7 (more of a C cup on me). The 7 was a tad bit too big, but since I knew I would be getting a saline fill on my right side on Thursday, it was the best option.

I also tried on a silicone breast form to do a comparison, but the AquaFlow was better for my needs. And the best part? It was less than $50, which is a steal in the mastectomy world!!!! The silicone form I tried on was over $300! It does make sense, however, since the silicone form lasts longer and so women who decide against breast reconstruction would opt for this sturdier prosthesis.

The tan object is The Waterproof Falsie; above it is the inside of my bikini top. It’s really happening!

In addition to buying The Waterproof Falsie, we also bought a little pocket. Mom is going to sew the pocket into the left side of my bikini, and then I’ll be able to insert The Waterproof Falsie when I want to go swimming. We were going to originally just sew in the prosthesis, but using the pocket instead will not sacrifice the integrity of The Falsie (I don’t want little beads falling out if a seam rips).

So now the bikini top, pocket, and my dear little Falsie are up with Mom at our vacation home in Groveland (near Yosemite). She is going to use her sewing magic, and next weekend when I’m in Groveland for Memorial Day, my bikini will be ready to go! I can’t wait to try it out and post pictures.

Moving on: on Thursday I saw the wonderful Dr. Festekjian again. He removed the stitches from my left side and did a saline fill on my right side. My right tissue expander is now at 550 ccs. I’ve decided to hold off on getting fills for a while, since my right side is now about even with both my cotton prosthesis and The Waterproof Falsie.

I confronted Dr. Festekjian bluntly about when I’ll be getting my left tissue expander replaced. When my infection was running wild and he first suggested that the tissue expander be removed, he said it would need to be out for at least two months. Of course I was shooting for two months, but at the start of Thursday’s appointment when I asked, he said “three to four months.” Bummer.

I wanted a more concrete time frame in order to plan my summer, so after he completed my fill, I pushed him for answers. He said three months was his final decision, and calculated the date based on when I got my the tissue expander removed. Three months from April 30 is July 30, which is a Monday. I can work with that. Three months is better than four!

In the coming weeks, Jeani (his assistant) and I will nail down a date for the tissue expander replacement surgery. Luckily it’s an outpatient procedure and I probably won’t have to stay in the hospital overnight. AND I won’t get a drain!!!!!! (Fingers crossed Dr. Festekjian doesn’t change his mind about that one!)

Well that’s all the update for now…The Strand is calling!

Graduation, my return to work, and a bikini top!

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Wow…what a weekend!

On Friday I graduated from USC. It seems like only yesterday my parents dumped me in my freshman dorm with a pile of stuff, and now eight semesters, 128 units, a few scholarships, and quite a few dollars later, I am officially a graduate!

Here’s just part of that pile of stuff from my freshman year. I think I cut out that picture of Michael Phelps and put it on my binder.

Graduation, or the Dementor Convention as I like to call it, was a long affair. The first half was the main ceremony in which the graduates were recognized “en masse.” Christiane Amanpour was our commencement speaker. She did a good job, though the speech could have been a tad bit shorter. Honorary degrees were bestowed (if you donate enough money, you too can receive an honorary degree from USC!) and we heard from the valedictorian (“Well I didn’t vote for you!”). At the end all of the dementors (read: graduates) were shooed away to their satellite ceremonies.

I dun gots me an edumucation!!!!

My satellite ceremony was held on the football practice field. Since the USC Dornsife College of Letters, Arts & Sciences is so big, we were split up into four random groups by major. My major, Narrative Studies, is really new and no one knows about it (I think there were like, five of us graduating with that major) so we were clumped in with the English department.

The satellite ceremony was short and sweet, even with the reading of each graduate’s name, so we were done by 12:45 pm…just in time for lunch! My parents and I piled into the car (which Mom had sneakily parked in a NON-EXISTENT SPOT, that trickster) and headed for Canter’s Deli…om nom nom!

At Canter’s we grubbed on everything in sight. I did stay true to my vegetarianism by avoiding the corned beef, but it was difficult. Corned beef from Canter’s is sooooo delish. During lunch we were interviewed for a Travel Channel show called Food Paradise. Apparently they are producing an episode about famous delis, and anyone who knows my father knows that he is a deli EXPERT. They got quite a few good sound bites from us.

My graduation dinner was on Saturday evening at Baleen, a restaurant in Redondo Beach. What a great event…my mom did a terrific job organizing it. There was so much food and everyone had a fun time. On Sunday we celebrated Mother’s Day with a family brunch and then some nice long naps. I gave my mom a Magic Bullet, the most sentimental and heartfelt gift EVER.

And the award for Greatest Mother’s Day Gift EVER goes to…

Today was my first day back at work. I work as an Associate Editor at Demand Media in Santa Monica, if anyone was wondering. I feel like I’ve had quite a few first-day-backs recently. I was actually excited to return since I’ve been pretty bored at home…but of course the Internet died around 2 pm and I had to go home early since I couldn’t get anything done without teh Interwebz! Hopefully it doesn’t crap out again tomorrow and I can actually get stuff done.

Now, I’ll address what you’re all dying to hear about: A BIKINI TOP. To be specific, MY NEW BIKINI TOP.

That’s right…I, Rachel Joy Horn, the boobless wonder, purchased a BIKINI TOP. That I will be WEARING. THIS SUMMER.

“…WHAT?!” I know, you’re shocked. Believe me, I was too. During the pity party I threw for myself after my tissue expander was removed I vowed that I would NOT appear in any sort of bathing costume this summer. It would just be too embarrassing and ugly, I thought. Instead I would wear a ridiculously oversized t-shirt like the fat kids wore during summer camp, because that would not draw any unwanted attention to me whatsoever.

Well, things changed when I started wearing my cotton prosthesis. I realized that I could trick the world into thinking I still had a left breast. So on Saturday morning I bravely ventured into Target’s swimsuit section, ready to break that vow.

I pulled out every bikini top that had adequate coverage (e.g. not triangles) and good straps. My mom, the expert seamstress, gave me guidelines for what kind of top would work best to support a prosthesis. I had brought one of the cotton forms with me and tried it on with each bikini top. At last I zeroed in on the perfect top: it had thick straps and a sturdy hook in the back, and it provided good coverage that could hide the prosthesis.

My new bikini top…yeahhhhh!

My job now is to actually find a waterproof prosthesis that my mom can sew into the bikini top. She said she could just use one of the cotton forms, but my concern is that I will become a human sponge. I’d rather find a gel insert that doesn’t absorb water. Does anyone have suggestions?

 

Calming down and getting on with life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

The BRAT diet? No, I prefer the BITCH diet.

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I’ve been home from the hospital since Wednesday afternoon, with one Jackson-Pratt drain, two antibiotics (recently reduced to one), and no left breast or tissue expander.

Let me first say that I am the only person in history who would gain three pounds from no eating and constant diarrhea while cooped up in the hospital. After what felt like hours of hearing my father’s loud chorus of, “You’re going to lose weight in the hospital! You’re going to drop lots of pounds!” I almost started to believe him. He, in fact, does lose immense amounts of weight when he’s in the hospital. Considering my recent hospitalization was very much like his last few (intense IVs of antibiotics and barely eating), he almost had me sold.

Expecting that one silver lining from this hospital stay, I excitedly hopped on the scale on Wednesday…and NOPE. LET’S ADD ON THE POUNDS INSTEAD. MAMA NEEDS A NEW LAP BAND!

(For those of you who don’t like sarcasm, leave now.)

I am slightly depressed by this. But I am even more depressed by the fact that I can’t eat anything. I mean, if I’m going to be fat, I might as well enjoy the process of it, you know? Okay, that’s not true. I can eat everything in sight (of which there is plenty of sight.) But I am NOT because of what happens fifteen minutes after I eat. Let’s just say, what goes in, goes out really really fast because the antibiotics I am on have killed off the good bacteria in my system. Eating is not fun at all and is inconvenient unless I am basically sitting on the toilet.

My mom and dad have been pushing probiotics (apparently these have helped Dad with a similar problem) but Dr. Festekjian’s team want me to hold off on those. They want me to try the BRAT diet first: Bananas, Rice, Applesauce, and Toast.

Check out the picture that comes up on the Wikipedia page for the BRAT diet (hahaha when I first wrote this, without proofreading, I accidentally wrote “BRAT die”!):

Well that all looks disgusting. Seriously. Let’s take the most bland, ugly foods we can find and throw them together to make a cute little acronym that describes the annoying and spoiled patients who need to eat this crap!

The thing about the BRAT diet, I’m learning, is that it’s not actually limited to BRAT. Jeani said I should just try to eat this gross stuff with other stuff: like, eating a sandwich with bread…or eating rice with some chicken (not happening.) The banana-in-a-smoothie suggestion didn’t make me want to vomit, so I think I might try that.

In other news, my left breast is still missing. Dr. Karam, my very kind and caring breast surgeon, sent me a nice email about an hour ago to see how I was doing. Since I’ve had a heavy helping of the BITCH diet, I sent him a rather cheeky response that included the following lines regarding my appearance:

“On the left, I look like a nine-year-old boy who was once very, very fat but then lost a great deal of weight in a very short amount of time. On the right, I actually look normal. HA. This tissue expander breast is now what I consider normal.”

On the way to the bathroom or kitchen I almost always catch a glimpse of myself in the mirror, usually hoping that this time there is actually a boob there. Instead of a boob, however, I’ve noticed that my rib cage and stomach are now officially bigger than my chest, a fear I’ve had for many years.

I can hear Madeline playing with her squeaky ball quite viciously in the living room. I’m going to go ask her if she’d like to play with my brain instead.

 

Cellulitis 2012: Out Goes the Tissue Expander

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Hi everyone. I apologize for not writing in a few days. While it’s true that I am insanely bored at the hospital, by the time I actually have a free moment to sit down and type out a blog post, I am usually exhausted and my eyes hurt too much so I nap instead. This one, however, is going to be exceptionally long. Get ready!

The last time I posted was Friday morning. My IV port had to be changed again since the Vancomycin beat up the first one too much. A new IV was put into my right hand.

Around noon I had an ultrasound on my left breast to check for fluid pockets. Images from the ultrasound revealed that there was one big pocket (I think about 5 cms) and possibly two smaller pockets. A few hours later, I was taken back to radiology to have that pocket aspirated. The radiologists inserted Lidocaine into the area to numb it up then used an ultrasound to locate the exact location of the fluid pocket. They then inserted a big ol’ needle into the area to extract it. In reality, the needle wasn’t very big at all, but since the ultrasound video magnified it it seemed like an eight-inch needle was poking around my body.

The fluid from this pocket was sent for a gram stain and a culture. The initial gram stain did not reveal any bacteria; however the culture could still grow into something after a few days.

When I returned from the aspiration, I noticed that the infection seemed to have spread around my breast. It all seemed very red. I was nervous. Friday was a very emotional day for me; I spent a lot of time crying and wallowing in self-pity.

My parents finally found out I was in the hospital on Friday evening. They had been on a road trip to the Grand Canyon since Tuesday April 24. I did NOT want to ruin their vacation by telling them about my hospitalization. I know, I know…I’ve heard from plenty of moms that it wasn’t MY choice if my parents wanted to come back early, and that parents want to know everything no matter the circumstances. But honestly, my family has had really bad luck when it comes to family illnesses and vacations and they deserved to see the Grand Canyon. Plus, I knew that my parents were planning to head up to our house in Yosemite after visiting the Grand Canyon. I wasn’t overly fussed about them not missing the Yosemite portion of the trip, since they can go up north another time. Instead of leaving Barstow to head north on Saturday morning, they stayed south to get into Los Angeles.

By noon on Saturday they were at the hospital. It was nice having them there, because they are medical-savvy and know how to talk to doctors. Having been through her own double mastectomy, my mom is familiar with the terms, processes, and side-effects. My dad, on the other hand (or should I say “foot”…wait for it!) , spent quite a few months in and out of UCSF in 2011 due to an infection on his feet. He had an IV of Vancomycin, too.

My friend Kaitlin stopped by the hospital on Saturday afternoon. It was such a pleasant surprise. She brought with her a book and an adorable little stuffed animal elephant. I immediately latched onto the fluffy gray creature. His name is Kapow and he’s my lucky elephant.

Kapow transfers some of his luck to me, trunk to nose.

On Sunday my infection did look better, and my veins were feeling even worse. The Vancomycin is so harsh that it burns my veins. Every time a drop went through the IV port on my hand, I could feel it sting. We had to take that IV port out. A transport nurse tried to place another IV; he poked me one more time and it still didn’t work. At that point, he made it clear that I couldn’t be poked anymore because the risk of infection was too high. If they wanted to put in any more antibiotics or draw anymore blood, I would need a PICC line, but the staff members who put in PICCs don’t work on the weekends.

Dr. Galanis, the Chief Plastics Resident at UCLA, came by to say that he was putting me on an oral antibiotic for the day and night and that I should be prepared to go into surgery on Monday morning, which meant no eating or drinking after midnight. Nothing was for sure yet, but the fact that my infection was getting worse was an obvious bad sign.

It was very relaxing not being connected to an IV at all on Sunday. I could shower and actually use both hands (during the first shower I had a plastic glove over my hand to protect the IV) and I could move around without worrying about accidentally pulling out the IV. I spent a lot of Sunday reading the book Kaitlin brought over, called Bitter Is the New Black by Jen Lancaster. It was a quick and somewhat mindless read about a former sorority girl turned business exec turned unemployed mess. I breezed through the entire book in one day, and was pleased by the happy ending, in which the writer gets a book deal! (Oh please let that be MY happy ending!)

On Sunday at midnight I started my eating and drinking fast. Not eating was easy. The heavy antibiotics have temporarily killed my taste buds and ruined my digestive system; whatever I eat comes out the other end pretty quickly. That doesn’t give me much incentive to eat. Drinking, however, is difficult; since I’m so used to being poked for veins, my natural reaction is to drink as much water as possible in order to plump them up. But I had to avoid the water so I wouldn’t be sick if I needed anesthesia.

On Monday morning my parents came over early, as did members of Dr. Festekjian’s team (Dr. Galanis included). They said it was highly likely that I would have the tissue expander removed, but they would leave the ultimate decision to Dr. Festekjian. He came in about an hour later and told me it would have to go because we were “fighting a losing battle.” At that point, I didn’t care anymore. I had read online about many women who stayed on some awful antibiotics for weeks, suffering the side effects, only to have to remove the tissue expander anyway.

Around 11 am I had a PICC line installed. A PICC line is a central venous catheter, a more permanent form of an IV; it goes through the arm and hooks up with a major blood vein near the heart. It can withstand the beatings from tough drugs like Vancomycin, and it can also be used to draw blood. While I’m here, I’ll never have to be poked again! Whoohoo!

Around 1 pm I was taken down to the OR to have my tissue expander removed. I woke up later in the recovery room and demanded ice. Whatever anesthesia they give me at UCLA is great; I am never nauseous after waking up and can guzzle water like it’s my job.

I was moved back up to my room about half an hour later. Someone from Dr. Festekjian’s team (I was still kind of out of it so I don’t remember who) came by to tell me that they had found some additional spots of infection near the tissue expander. They are culturing those right now.

In order to give me some nourishment, I’ve been hooked up to an IV drip since yesterday. There was also a drip for pain meds.

I felt fine when I woke up today. In the afternoon Dr. Galanis took a peek at my left breast (or total lack thereof at this point!) and said it was still red but it looked better. I have only seen the top of it through the tight bandage; it looks like a wrinkly skin crater. Ewwwww.

My parents visited in the morning, and then I was surprised by two friends from work, Garineh and Mia. They came with a card signed by everyone who sits around my desk and a Jamba Juice…perfect! Jamba Juice is the only food I’ve been eating. About an hour before they arrived, some beautiful yellow flowers were also delivered from my team at Demand Media.

Mia (on the left) and Garineh (right) came to visit me from work! Please note my lovely halter bra and drain. Yep, I have another drain.

And now I am going to tell you all the highlight of today…drumroll please…

I got to see a doggy!!!! After hounding (bahaha) the UCLA People Animal Connection for three days, we were finally successful in getting a real live dog to visit me. His name is Scout and he’s 10 1/2 years old. He’s a German Shepard mix and he is so sweet. He sat on my bed and let me pet him for half an hour. His owner, Beth, told me about the strict requirements for volunteer dogs. It was very impressive–she should be proud that her dog was accepted at UCLA!

Scout was so friendly!

I hope that I can continue to bother the People Animal Connection in order to receive visits from more of my four-legged friends. Animals brighten my day so much. I must figure out a way to sneak Madeline inside. Let me know if you have any ideas! Now off to bed.