Category Archives: Prophylactic mastectomy recovery

I had a mastectomy before it was cool…#hipstersofmastectomies @AngelinaJolie

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My Medical Choice by Angelina Jolie

Last night, actress Angelina Jolie went public in the New York Times with her decision to undergo a prophylactic mastectomy. She revealed she carries a BRCA1 mutation, and that her mother passed away from cancer at the age of 56.

In her piece, Angelina writes about her children wanting to know if she would succumb to the same fate as her mother. She talks about the cancer risk associated with her BRCA mutation and the various steps of the surgery. These sentiments are all familiar to any woman who carries a hereditary breast and ovarian cancer risk, but what resonated with me the most in her writing was this:

“But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.“

Thank you, Angelina, for sharing your story. Every time a woman is brave enough to open up about her experience with hereditary cancer–from Angelina Jolie to Giuliana Rancic to Christina Applegate to my dear friend Trisha to ME!–there is limitless potential for making a difference. How many women will opt for BRCA testing because of Angelina Jolie? How many high-risk women will be more inclined to consider preventative surgery? Even if just one woman takes action, Angelina Jolie’s revelation will be worth it.

You go, girl. Thank you for joining the ranks of selfess women who have opened up about their mastectomies.

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Bye Bye Boobies: One year later

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One year ago today I was lying in a hospital bed at UCLA Ronald Reagan Medical Center, extremely groggy and extremely happy. Part of it was from the pain medication, I’ll admit, but most of that happiness was caused by an overwhelming sense of relief.

aftermastectomy

Some women wait years between testing positive for a BRCA mutation and having a prophylactic mastectomy. I waited 140 days. 140 days of discontent. 140 days of suspicion. 140 days of self-loathing. 140 days of feeling like a stranger in my own body.

I went into my mastectomy on the morning of March 13, 2012 with anxiety and excitement, not knowing what would come next. I woke up in the afternoon without my breasts, but with the wonderful feeling of peace. A weight had been lifted: I wouldn’t have to think about breast cancer all the time, and I could get back to loving myself again.

One year later, I can say with confidence that I am once again glad to be me, Rachel Joy Horn. I don’t feel broken anymore, and I’m not living in fear of my body.

It’s been an interesting year, but looking back on it, certain moments that at the time felt awful were just hiccups along the way. Those Jackson-Pratt drains were horrendous, they really were–but whatever. My family didn’t care about them. My boyfriend didn’t mind them. My friends didn’t think they were weird. Despite them being a huge inconvenience to dressing like a normal human being, they didn’t stop me from having fun and being social.

At the time it was playing out, it felt as if the cellulitis infection and subsequent tissue expander removal would ruin my life. I literally sat in the hospital bed, Googling freezing-cold places I could escape to so I would never have to be seen in a swimsuit. But then I found a cotton prosthesis, and my mom made me a kick-ass mastectomy bikini with a waterproof falsie. And so I had One Ugly Summer…One Fun, Sunny, Active, Flat-Chested-on-the-Left-Side Ugly Summer.

One Ugly Summer…

Over the last year, I’ve learned that I have horrible veins and that I have fabulous friends. I’ve discovered that narcotics can give you migraines and that social networking can give you an incredible support community. I’ve realized that talking to doctors is crucial, just as talking to strangers is–you never know who understands and how they can help.

Sometimes I miss my breasts, or more specifically, my breast tissue. It’s a rare moment that I get jealous of another girl’s rack, but it happens. (I’m looking at you, Sports Illustrated cover Kate Upton.) My new boobs are not perfect…but then again, neither were my old ones. They are, however, mine, all 800 ccs and 14.2 cm of them, and they fit me. There are even glorious times when I think that I am the luckiest girl in the world for having them, like when I can wear a backless dress without a bra and not worry about sagging.

dress

Okay, so I’ve never actually worn this dress…but just knowing that I CAN wear it is what matters.

For all of the women going through breast reconstruction right now, I ask you to please be patient. I know that it can seem very disheartening, what with all the scars and the weird shapes and the rippling. But things will look better, just wait…and maybe ask your plastic surgeon about some nipping and tucking.

To my friends and family, thank you for the flowers, the pillows, the sweet treats, the fuzzy elephants, the magazines, the nail polish, the phone calls, the text messages, the cards, the hospital visits…the love.

To acquaintances who have reached out to me with words of support and encouragement, thank you for your courage to speak up.

To my work colleagues, thank you for understanding my circumstances and for accommodating me with such graciousness.

To the wonderful ladies online going through something similar, thank you for your bravery and for your willingness to share your experiences to help me and others like me.

One year has gone by so fast, and I know part of that is thanks to all of you. Before I know it, I’ll have had my implants for ten years and it’ll be time to replace them. But let’s not rush that. =)

 

Wrapping up 2012 and welcoming 2013

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Hi friends! I hope you all had a great holiday, whatever you celebrate. Over here at the law firm of Horn, Horn & Horn, we celebrate Hanukkah and Christmas.

It’s been more than a month since my implant exchange surgery, and I am much happier with how the implants have settled in. There is still some difference in nipple height, but I think the breasts have evened out  in size and look much more similar.

People have asked me what size I am now. The answer? 14.2 cm 800 cc–duh, obviously.

Don’t worry. I get it. Unless you’re Dr. Festekjian, that means nothing to you. It doesn’t really mean much to me, either. While Christmas shopping at Target a few weeks ago, I bought a cheap bra on a whim. I tried on three different sizes: 36C, 36D, and 38D. The 38D bra fit the best, so right now that’s my size, but I will go to a professional to be fitted soon. (And FINALLY use the Victoria’s Secret gift card my dear friend Anna gave me right after my mastectomy–whoohoo!)

I’ve been dressing up a lot and I love it. If you know me offline, you know that I prefer comfort over style. My weekend uniform consists of yoga pants, a tank top, and sneakers. Sometimes I shake things up with a sweatshirt if I’m feeling daring (or cold). But since I have these brand spankin’ new boobs, I’ve been looking for an opportunity to show them off! Luckily, this holiday season did not let me down.

At the beginning of December, I went to Vegas for my sorority sister Cami’s bachelorette party.  My favorite thing about going anywhere with sorority sisters is that we all share clothes. On Friday night, I wore one of Jennifer’s dresses and I actually had CLEAVAGE for the first time since March! Sorry, Bryce.

The next weekend was my company’s holiday party at the SLS Hotel in Beverly Hills. It was amazing. There were EEL TACOS. EEL FREAKIN’ TACOS. I used that magical Forever 21 gift card to buy a cute strapless dress for the party, and I even got to wear my giant heels because Bryce is 9 1/2 feet tall!

SLS hotel party

“Hey Bryce, how’s the weather up there?”

AND THEN…Cami and her fiance Nick got married this past Saturday! Their wedding was at the Balboa Bay Club in Newport Beach. It was a small, intimate ceremony. Cami looked beautiful! Nick is a lucky man.

I wore the pink dress I wore to my graduation dinner in May. The only difference was that this time I had two boobs! Last time I had one tissue expander and one falsie. I think I prefer the two boobs.

Sorority sisters! From left to right: Jennifer, Marissa, Cami, Danielle, Rachel, Nora

Sorority sisters! From left to right: Jennifer, Marissa, Cami, Danielle, Rachel, Nora

Clearly, I’ve come a long way in my crazy mastectomy journey. But it’s not over yet. I like my implants now. I think they are a good size and they look and feel natural. However, I’m not in love with them.

Should I go back to Dr. Festekjian and ask him to do more work on them? Maybe. Probably. But even then, I won’t be IN LOVE with them. Because I am not IN LOVE with the rest of my body! Until I am completely happy with how everything else looks, I’ll never be 100% satisfied with my implants.

So 2013 is going to be about changing my body the difficult way…without plastic. I’ve struggled with my weight all my life. (Literally, all my life. I learned over Christmas that I weighed over NINE POUNDS when I was born. HOLY SHIT.) Anyway, 2012 was one of those struggle times because of the mastectomy. Now it’s time to get back into shape.

"Stop right now, ma'am! Put the spoon down and back away slowly."

“Stop right now, ma’am! Put the spoon down and back away slowly.”

Here are some of my goals for the new year:

  • Develop some upper body strength. If my arms look toned, my implants will look better. I am going to keep seeing my physical therapist Jenni to learn how to do this safely.
  • Get my abs back. Believe it or not, for the first half of high school, my stomach was really toned. I did Pilates all the time and it really worked! Then, for whatever reason, I stopped. And on came the flab.
  • Get back into spinning. It’s my favorite workout, because it’s effective, and everyone looks like shit afterwards. I know that sounds harsh, but I’m a sweater; no, not a cardigan–someone who sweats a LOT. I hate working out at the gym next to girls with immaculate hair and makeup who look amazing the entire time. NO ONE looks good after 45 minutes on the stationary bike at a spin class.
  • In addition to spinning, I want to try more cardio. I am going to join a local gym, probably the YMCA, and I plan to take advantage of the classes offered. Dance Aerobics and Zumba both sound pretty fun to me.
  • Eat out less and cook more (good for the waistline and the wallet!). I need to learn how to cook and be more adventurous with my meals. A few weeks ago, a friend made Bryce and me enchiladas for dinner. He put spinach and mushrooms in mine because I’m a vegetarian. They were DELICIOUS. I would have never thought to put spinach in an enchilada…it was life-changing
  • Buy a castle.
  • Appear on Jeopardy.
  • Win Jeopardy.

I’m not sure yet how I am going to measure my success. My friend at work, Garineh, had a similar New Year’s resolution for 2012.  She wrote a blog post on eHow with tips for keeping a resolution. I’ll develop my actual numerical goals based on some of her advice.

One thing is for sure: once I meet my goals, I will have Michelle Obama’s arms, Gwen Stefani’s abs, Wolfgang Puck’s skills, and Warren Buffett’s wealth. (Yeah, that’s how often I eat out now and how much I plan to win on Jeopardy!) Oh and this castle.

What are your goals/resolutions for 2013? Happy new year, everyone!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Back to spin classes

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The interview with Trisha Frick is coming along shortly, I promise! I didn’t really account for how long it would take me to transcribe it…we talked for over 25 minutes! But I swear I’m working on it.

I just wanted to let you all know that I finally returned to my beloved spin classes. Last Thursday I went for the first time to YAS in downtown LA. I always go to the same instructor, Elizabeth. I explained to her before class started that I was a few months out of a major surgery and that it was my first class back. She gave me some tips for pacing myself. The great thing about spinning is you are always in control of the workout, because you can adjust your resistance and speed. Plus, Elizabeth is a motivational instructor who always pushes you to do YOUR personal best–I know, that’s cheesy, but it works and it feels awesome.

I was really shocked at how well I did during that first class. I lasted the entire 45 minutes and only took a few breaks. And I felt no soreness during the days after!

This morning I woke up bright and early to make Elizabeth’s 6:15 am class. I felt great after, and I’m so glad I went. Finally, my spinning days are back!

I think it is important to note, however, that I’m glad I waited a long time before returning to spin classes. Yes, I resumed exercise only five days after my mastectomy, but walking and hula hooping (two of my other favorites) are more low-impact and less strenuous. They’re easy on the mind and the body. If I had tried to get back into spinning after only a month or so, I would have suffered a lot. My body was just not ready for it.

For other women who are recovering from surgery or considering a mastectomy, make sure you have conversations with your doctor about when it’s safe for you to resume exercise. I was annoyed with Dr. Festekjian because he kept telling me to hold off on spin classes, but I’m glad I listened to him.

And now I have some big exciting news I want to share with you all: I GOT A JOB! A REAL JOB! Okay yes, I had a job before, but I was a contractor. As of Monday I will officially be a permanent employee of Demand Media, working as an Associate Editor. To get an idea of what sort of work I do, check out this slideshow I wrote a few weeks ago for eHow.com, a property owned by Demand Media: Preparing for a Mastectomy.

I’m ecstatic about this opportunity for two reasons: First, I enjoy working at Demand Media (I started as an intern there in May 2010) and look forward to learning more about web publishing; second, I GET HEALTH INSURANCE.

My health insurance coverage will start at the beginning of July, meaning there will be no gap in coverage for me (my current insurance ends on June 30–will elaborate more in a future post). This is perfectly timed for my upcoming tissue expander replacement surgery.

Health insurance companies and their policies are a headache and I’ve definitely learned a ton about them recently. My mom is a wealth of knowledge when it comes to dealing with health insurance companies, and I’m definitely going to pick her brain for a post about BRCA, mastectomies, and health insurance.

Have a fantastic weekend, everyone! I’ll be in San Diego with some girlfriends, (hopefully) enjoying the sun.

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!!!

 

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. If you want to see what the infection looked like before my surgery, please email me. It’s not a pretty pic, but I’m happy to send it to you if you think you have an infection.

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.

Cellulitis 2012: Back in the hospital!

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Yesterday I went to my 3 pm tissue expander fill at Dr. Festekjian’s office, which I was pretty sure would not actually be a fill since my left breast looked so swollen and red. Maria looked at it and agreed that Dr. Festekjian should definitely check it out. He came in, asked me about the time frame of what happened (I slept on my tissue expanders on Saturday night, felt pain on Sunday morning, etc.), and then examined the area. He then looked at me and said, “You have to go to the hospital.”

For a second there I wasn’t sure if he was trying to like, joke with me or something. I just kind of stared at him. He didn’t ask any questions or do any tests, just–”hospital!”

Then I started to get pretty upset. He mentioned the word “cellulitis” and said that I needed to get an IV with some heavy antibiotics. I asked him how often he sees this; he said each year, typically three or four patients will have cellulitis after a mastectomy…which is out of about 140 mastectomy patients. SWEET. Of course it would happen to me, the “young and healthy” patient.

Here’s a picture of my cellulitis…I’m not posting it directly in the blog because I know some people can get a little queasy from medical stuff!

He said he would take care of the arrangements to get me admitted next door at Ronald Reagan UCLA Medical Center (the hospital portion). After about 15 minutes, Maria came into the room and told me they were ready for me at admissions.

Now it’s lucky, I guess, that I am constantly driving from home to home (my apartment, my parents’ place, Bryce’s house) and half of my life is in my car. We walked down there and I was able to grab my laptop and charger as well as some clean clothes. The car itself presented a new problem: what was I supposed to do with it? UCLA is not very flexible with their patients when it comes to parking. Maria said I could leave my car there overnight, but unless someone took it out of the parking garage, went back in to get a new ticket, and parked in a new spot, I would get a parking ticket. Luckily my friend Kate said she’d help figure out the parking situation.

As we walked over to the hospital, I asked Maria what the next few days would be like. She said I should expect to be at the hospital for the entire weekend since Dr. Festekjian would be the one to make the ultimate decision to discharge me. She explained that over the course of the next few days, I would be given an IV drip of antibiotics in order to try to fight a broad range of bacteria (cellulitis, I’ve since learned, is just the name for a general bacterial skin infection.) If the antibiotics work successfully, the area will be monitored and given a few weeks to rest before my tissue expander fills continue.

If the antibiotics don’t work…well, this is the fun part of which I am really terrified: the tissue expander will be removed for at least two or three months.

I think we can all agree that the latter option sounds awful. Given those two choices, I definitely support the IV antibiotics route! (Though it’s not like I have an actual say in this…what Festekjian wants, Festekjian gets.)

Around 4:15 pm I completed admissions papers at Ronald Reagan UCLA Medical Center. I was finally assigned a room on the sixth floor (6347 West) around 5:00 pm. There’s a view of UCLA’s football field, and I can see the helipad–pretty cool.

To the left is the UCLA football field; to the top right is the helipad.

For the next few hours, I sat around…doing nothing. My lovely roomie Danielle showed up around 6 pm with salads and GIANT chocolate chip cookies. I was ravenous, and that meal hit the spot!

Someone came in to draw blood around 6:30 pm. FAIL. My veins are awful, I know. Everyone tells me how nonexistent they are. In the past, however, I’ve never actually had a problem getting blood drawn. He stabbed my left arm and a few minutes later dumped the vials into the toxic waste bin, saying “I’ll have to call in someone else.” He hadn’t gotten any blood!

I started chugging water. This was my first “surprise” blood test; usually I know it’s coming so I drink a lot of water the day before and morning of in order to plump up my veins.

Another woman came in about twenty minutes later. She continued to poke and prod me, looking for a good vein. Nope.

Bryce and his mom showed up later in the evening, which was a pleasant surprise. I had told Bryce not to worry about visiting me the first night since he was planning on spending the night at the hospital on Friday. My friend Kate, who goes to UCLA, also dropped by…with snacks and tampons! AND she was able to find a parking spot for my car–what a lifesaver!

Another phlebotomy specialist came in. He looked much more serious than the first two…he meant business! I explained that I really hated needles and would appreciate if he could apply some numbing cream before poking me. He spent a good deal of time lifting up my arms and using a tourniquet to try to find a vein. Finally he settled on a vein on the side of my left wrist. He applied the cream, and about fifteen minutes later, stuck in the needle. And…there was nothing. He poked around with the needle, trying to strike gold with a vein. NOPE.

He had to call in the big guns: an ICU nurse. Together, they poked and prodded even more. Finally, the ICU nurse (who was hilarious, by the way; a Londoner who my dad would have loved) zeroed in on a vein in the elbow crevice of my right arm. He slapped at it for a good three minutes, and as soon as it popped up again, he went for it…and there was success! We all clapped. At least not all of the efforts were in vain! (…pun…hahaha)

They took two vials of blood and also used that area for my IV port. Around 10 pm my nurse hooked up the antibiotics to the IV. Finally, treatment!

I know one of the antibiotics was Vancomycin, and boy, did it make my head itch!!! I learned online that an itching scalp is a common reaction from Vancomycin and that Benadryl should help it. My nurse injected some Benadryl into my IV, the itching stopped, and I finally got to sleep.

Members of the plastic surgery team (Maria included) woke me up bright and early at 7 am today. I don’t know when they arrived at work, but I’m still amazed at how happy and put-together they all were. Give me a break! I’m lying in bed with hair like Einstein’s from all of the itching, and  then these beautiful, smiling people suddenly surround me. It was a sneak attack!

Maria checked on my left breast and said that it already looked to be improving. YES!

Cellulitis, you are EVIL. I need to do more research on the topic, but I’ve gathered the following from WebMD:

“Cellulitis is a skin infection caused by bacteria. Normally, your skin helps protect you from infection. But if you have a cut, sore, or insect bite, bacteria can get into the skin and spread to deeper tissues. If it is not treated with antibiotics, the infection can spread to the blood or lymph nodes. This can be deadly.”

“At first, the infected area will be warm, red, swollen, and tender. As the infection spreads, you may have a fever, chills, and swollen glands.”

Well, that all sounds accurate to me: I had a major surgery involving a cut, the area is definitely red and swollen, and I really started to feel sick when I developed a fever.

Today I will have an ultrasound of my left breast to make sure there isn’t any fluid buildup. If there is, it will need to be drained. Fingers crossed there’s no fluid!

Well, that’s it for now. My nurse just started another IV drip. Check back for more updates on Cellulitis 2012!

 

Fear

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I know the title of this post is not very SEO-friendly, and I don’t care. This is probably as stream-of-consciousness as I’ve ever written.

I’m scared. On Monday I wrote about the pain in my left breast when I lifted up my arms; I stayed home from work to rest. On Tuesday, it got worst. I stayed home again and developed a throbbing headache. My parents left for a trip to the Grand Canyon that day, but I still drove over to their apartment in Redondo Beach because I knew it would be more peaceful there and I would have access to the vast medical supplies of The Horn Pharmacy.

I slept for a lot of the day but my head really, really hurt and I felt kind of nauseous too. At first I thought it was because the only thing I ate during most of the day was sour gummy worms (…you mean you wouldn’t consider half a bag a nutritious meal?) But it just kept getting worse. Nausea for me seems to occur in the form of burps. I know that’s weird, but I’ll have a burp stuck in my throat and it just won’t come out and it’ll make me uncomfortable and almost sick until it’s belched out.

I really didn’t want to call my parents but I wanted to make sure I didn’t have a fever. I was slightly concerned that the pain associated with the tissue expander was linked to the headache and nausea.

Called Mom; she told me where the thermometer was located. 99.8 degrees. She told me that if it was worse in the morning, I should call Dr. Festekjian’s office.

Bryce came over in the late afternoon and took excellent care of me. He even bought chicken noodle soup and removed all of the chunks of chicken because I’m a vegetarian (yes, I’m aware the broth itself is made from chicken stock–I don’t care.)

I took some Tylenol and that really helped my pain. My temperature was down to 99.1 degrees when I finally went to bed.

This morning when I woke up my temperature was even lower, I think it was down to somewhere in the 97 region. Score! I felt that was a good sign. But I felt even more nauseous today; every time I tried to rest my head on a pillow, it was uncomfortable because there was a burp waiting to escape.

I had hoped to drive back to USC earlier today, but since I felt queasy it seemed like a bad idea to drive. So I stuck around Redondo Beach and realized that my limbs were really sore. It was the same sort of dull pain I felt during my hospital stay and after that awful weekend of “hunkering down” while waiting for my drains to be removed. I knew I needed to move my legs a bit, so I went on a walk.

A VERY short walk. I don’t know if it was the fact that I wore my Northface jacket and that made me hot, or if I really was starting to burn up from a fever, but I could barely get a quarter of a mile without feeling sticky and dehydrated. I turned around, went home, and chugged water.

My temperature started to rise after that. First back up to 99 degrees, and then throughout the evening it got progressively higher. When I went to bed it was 100 degrees.

Sleeping was awful. My head hurt and it seemed that every pillow made it throb. I was also freezing when I crawled into bed but by the time midnight hit, I was drenched in sweat.

So that’s where I am now: sweating, awake, and with a 101.1 degree fever.

That’s why I’m scared. I thought, for a while, that I had the flu. I know it’s going around and a few close friends have had it during the past few days. But why would my temperature be so high?

I am so worried I have an infection. After showering today I looked at my chest in the mirror and realized that my left breast is bruised; the skin has a slight purple tinge to it, and it’s not just in one spot–it’s everywhere.

At 3 pm on Thursday (which I guess is actually technically today) I have another fill appointment with Dr. Festekjian. I texted Maria yesterday to clue her into the fact that my left breast didn’t look too good and to make sure Dr. Festekjian himself would examine it. I am so scared for that appointment.

First of all, I doubt I’ll actually get a tissue expander fill. The first time I had a fill, only the right side was filled up with more saline because the left side was “still a little pissed off.” The left side now doesn’t just seem “a little” angry–it looks like it needs to meet with an anger management therapy group. If my fills are delayed, that means that my exchange surgery will be delayed, and I NEED to have my exchange done by June 30th.

That’s just the first problem; if that is the only thing that’s wrong, then I’ll take it.

But what if I do have an infection? Infections are not good. At all. What if Dr. Festekjian tells me I have to start over with my tissue expander? I don’t know what I’d do. God, I really don’t know. There’s no way I would have my implant exchange by June 30th, I know that. And I just don’t know how I would deal with my lopsided appearance. I’m fine with having smaller boobs; people know I had surgery. But if I had a B cup on the right and a flat chest like a nine-year-old boy on the left, I don’t know. I wouldn’t be able to leave the house. I wouldn’t go to graduation. I wouldn’t go to my grad party. I wouldn’t go to work.

It’s fine that I am sick right now. It’s the shittiest timing ever: I missed the senior goodbye banquet at my sorority tonight; I’m not going to be able to participate in tomorrow’s Fountain Run; I probably won’t get to go to my last sorority invite on Friday. But those things I can accept if my tissue expander survives. Missing them would not be in vain.

So that’s it I guess. The 3 pm appointment with Dr. Festekjian will hopefully soothe my worries.