Bye Bye Boobies: Two Years Later

Today marks the two-year anniversary of my prophylactic double mastectomy at 21 years old. Last year I had a lot to say about my one-year anniversary; this year, I’m going to let photos do the talking.

Let these photos–organized in chronological order starting with March 13, 2012 and ending with last night–serve as evidence that my life has been full, happy, and pretty much awesome since my mastectomy. If you’re considering a mastectomy or you’re in the middle of breast reconstruction right now, I hope these photos  give you confidence and encouragement for your own journey.

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

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.

Bye Bye Boobies: One year later

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.

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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.

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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. =)

 

Ten days after my implant exchange surgery

It’s been ten days since my implant exchange surgery. I admit that I originally planned to post about it much sooner, but emotions took me by surprise and I decided to wait a bit longer. Details about that to come later in this post.

My implant exchange surgery was at the UCLA Outpatient Surgery Center. I was told to arrive between 9:30 and 10 in the morning. I got there on time and completed the necessary paperwork after changing into the lovely surgery garb. Then I waited. And waited. And waited. By 11:45 am, Mom and I were rather annoyed. We were told that Dr. Festekjian was still in surgery from an earlier case.

It’s frustrating…but there’s nothing you can really do in that situation. If some sort of complication happened during my surgery, I’d want Dr. Festekjian to care about fixing it instead of trying to rush so he could get to his next case.

Finally Dr. Festekjian came by around 12:30 pm and drew all over me in marker. My chest looked like a game of Connect the Dots. Then the anesthesiologist stopped in to ask me a few questions and to start my IV. If you’ve been following my blog, you know about the IV drama. Well, the saga continued with this most recent surgery:

I mentioned to the anesthesiologist that I have very bad veins. After much prodding and examining, he informed me that “whoever said you had bad veins was wrong; you have NO veins.”

Well, shit.

He first tried my left hand. The needle went in and he poked around for a while but couldn’t get into a good vein. Ouch. Then he got wise and gave me a numbing shot, got down on his knees and poked my left wrist. After a few minutes he struck gold. Rejoice! No more poking. After he finished, he remarked that I could now put it on my CV that I “bring doctors to their knees.”

My veins really piss me off. Let me just rant for a minute: WHY ARE THEY SO AWFUL?! The day before my surgery I drank more than 80 ounces of water just to plump them up. And it was all for naught, because I still had to get stabbed multiple times! BLEHHHHH.

After the IV fun, I was wheeled into the operating room. That’s always a strange experience, because the anesthesia sleepy medicine has just been administered so I start to feel a bit giddy but I’m still coherent. Also, the operating rooms are never what I expect them to look like. I guess I’ve seen too many dramatic operating room scenes on TV.

Well I guess I conked out, because a while later I woke up in a recovery room to the sight of my friend Dustin, a first year UCLA medical student. Dustin and I went to high school together. He stayed with me for about 45 minutes, which was nice because it forced me to stay awake and to come out of my loopy state.

I was discharged around 4 pm and at my parents’ place in Redondo Beach by 5:30 pm. Bryce had a nice cold Jamba Juice waiting for me, and my mom whipped up some tomato soup. Yum. (I could really go for that right now, actually…)

All in all, the surgery process and immediate recovery was very reasonable. I did not take any narcotic pain meds (Tylenol was fine), and I could move around the house with relative ease.

Wednesday morning was the “big reveal,” the first time I would see my implants after surgery. I woke up early, excited to see them. I stood in front of the bathroom mirror, eyes closed, while Mom helped me cut off the ace bandage bra. The bandages were removed…I opened my eyes…and…

bleh. Bleh bleh bleh. I was not happy. My new breasts looked completely uneven. The left side was small and tight, while the right side seemed large and droopy. The nipples were no where near even. North and South Pole!

I stared for a while and then started to get emotional. Mom snapped some pictures and fired off a distraught email to Dr. Festekjian. I texted Bryce a very cryptic “my boobs look bad I’m sad leave me alone” kind of text, posted a quick “OMG” message to the Facebook previvor group, then cried myself back to sleep.

A few hours later I woke up to a reply from Dr. Festekjian and a bunch of comforting messages on Facebook. Apparently I was the only person in the world who did not know that you cannot judge the implants’ appearance immediately following surgery. Things are swollen, bruised, tight, uneven. They need to settle, and that takes time–weeks to months, even.

In addition to his email reply, Dr. Festekjian called later that day. He explained in detail that my left side had more scar tissue from the infection, so he did much more work on that side. Over time that side will drop and adjust to match the right side.

Well…that makes sense. The more he explained, the more I understood. He said he was still very happy with the results and could see symmetry in the breast folds. I don’t particularly know what that means, but a happy Dr. Festekjian is never a bad thing.

The reason I didn’t post on my blog that day or even the day after is that I didn’t want to be too emotional and scary. Emotion is good–and it’s honest–but I didn’t want my uneducated, post-surgery freakout to worry someone else who might be having the surgery. I hope that makes sense.

Yesterday I had a post-op appointment with Dr. Festekjian. Already he can tell that the left side is settling more. He said I should give it about eight weeks to relax into place, and that my right side will not drop anymore. We discussed options for after that eight weeks is up, incase I’m still not happy with the results. Fat grafting could be done to fill out “bumpy” areas (such as underneath the breast) and nipple alignment could also be adjusted. Insurance will cover those procedures since they are still a part of breast reconstruction.

I’m very pleased to know that I have options in the near future if I’m still not happy. But for now I’ll try to give it a rest and let nature take its course. Dr. Festekjian advised me to “stop thinking about your breasts for a little while.” I’m not so sure I’ll ever be able to do that, but I’ll try.

For now I leave you with these two comparison shots of the tissue expanders and implants. The implant shots were taken this evening.

 

My implant exchange surgery is on Monday!

That’s right. You read that correctly: I GET MY SILICONE IMPLANTS ON MONDAY.

I’m going to be honest with you–that’s something I never in a million years would have expected to ever say, write or even think in my life. Me? Breast implants? Nah, never, not for me…but it’s happening! I’ll eat those thoughts with a fork and spoon (just not after midnight on Sunday).

After more than one year since finding out about my BRCA mutation and more than eight months since my original mastectomy, I am finally going to be done with surgery.  I almost don’t believe it’s real, but it is–two breasts, four Jackson-Pratt drains, three tissue expanders, one cellulitis infection, two falsies and many wireless bras later.

I had a pre-op appointment with Dr. Festekjian on November 8. He told me my implants will either be 700 ccs or 800 ccs, most likely Natrelle style 45 silicone. A few posts earlier I said that I probably wouldn’t get those implants because they’re very narrow, but Dr. Festekjian knows that I am most concerned about projection and they offer the highest projection. The total size of the implant (700 vs 800 ccs) depends on the width he needs to cover (13.5 cm or 14.2 cm).

At this point I’ve really stopped worrying about what size my implants will be. I trust Dr. Festekjian’s judgment completely. He did such a good job with my tissue expanders; people are always surprised to find out that my tissue expanders aren’t actually my permanent breast implants.

The night before my surgery I plan to take some photos of my chest with tissue expanders. I really want to create a visual of the different “stages” of breast reconstruction. The final stage photos won’t be ready for a few weeks since there will be swelling after the surgery.

Sigh. It’s happening. Finally.

Final fill update and implant exchange surgery scheduled

I’m the worst blogger, I know. I’m sorry. I moved into my new apartment in September and I still don’t have Internet, but I don’t want to get it until I get a TV, which should be around November 10. For now, I have to mooch teh Interwebz off of work and my friends. But it is really awkward to post a new blog entry at work, when all of my blog posts have pictures of my boobs. It just doesn’t seem like the best idea, you know?

Let me update you on my breast reconstruction status: I had my final tissue expander fill with Dr. Festekjian on October 4. He filled each expander up to 700 ccs of saline. My expanders can hold up to 750 ccs, but Dr. Festekjian discouraged me from filling anymore. He said that the expanders already felt very firm and that the skin was tight, so more saline could be painful for me.

Stopping at 700 ccs was fine with me; I’m (at last) happy with the projection of my tissue expanders. You can’t see much of a difference between 650 ccs and 700 ccs, but here’s a comparison:

My implant exchange surgery is set for Monday, November 19, which is the Monday before Thanksgiving. I’ll be taking Monday, Tuesday, and Wednesday off work, then Thursday and Friday are vacation days. I should be back to work the following Monday.

Here’s me and my 700 ccs of saline on each side!

Last Wednesday was Breast Reconstruction Awareness (BRA) Day at UCLA Medical Center. I went with my mom and Bryce to show some love for Dr. Festekjian. I’m actually really glad we went; I didn’t think I’d learn much, but I asked Dr. Da Lio (another plastic surgeon) about the differences between silicone implants and “gummy bear” implants.

I’ve been hearing a lot about gummy bear implants lately, and I wanted to know what was so great about them. Dr. Da Lio told me that UCLA does offer gummy bear implants (a form of very dense silicone implants), but they are not yet approved by the FDA so patients who opt for them must participate in a study. He said they’re firmer than silicone implants and that they retain their shape when cut. But the negative is that they are not a perfect circle (unlike other implants); if they flip around under the muscle, the breast shape will change. They are not guaranteed to flip, but Dr. Da Lio said that upper body exercise could make it happen. I like to kayak and I want to get into weight lifting, so the risk of gummy bears flipping is there for me. Silicone implants it is!

I’ll be going in for a pre-op appointment with Dr. Festekjian on November 8. I already know that he is going to order a few different sizes of silicone implants for me, but hopefully he’ll give me some idea of the actual numbers and sizes.

Once my implant exchange surgery is done, I should be finished with surgeries. Since I had a nipple-sparing mastectomy, I don’t need to worry about nipple tattoos. But when I was at BRA Day, I met a tattoo artist named Ruth Swissa who does medical tattoos for breast reconstruction patients. Her work was AMAZING! She had a bunch of temporary 3D nipple tattoos. They looked SO REAL. She had one on her arm and if I didn’t know anything about mastectomies or breast reconstruction, I would have been really freaked out by it because it really did look like she had an oddly-placed nipple! To any of my readers who are going to have nipple reconstruction: email me if you want a few of the nipple tattoos! I snagged some and would gladly mail a few to you.

OK, I’ve been mooching off of my friend’s Internet for too long. Happy Halloween, everyone! I leave you with this picture from Saturday evening of Bryce and me. Can you guess who we are?

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

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

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

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

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

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

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

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

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

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

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

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

And this is what a silicone implant looks like.

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

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

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

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

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

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

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

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

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

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

 

It’s the most wonderful time of the year!

And no, I don’t mean Christmas…

It’s time to think about implant sizing! YAYYYYYYYYYY!!!!! [as I type this, I imagine children across America are cheering with delight–because the only thing better than Christmas coming early is that annoying girl with the blog getting her damn breast implants already!]

But seriously. It really is time for me to start thinking about what size I want my implants to be. No pressure, though. I’ll only be stuck with them for ten to fifteen years.

On Thursday morning I had a tissue expander fill with Dr. Festekjian. He filled me up with 75 ccs on the left–yowza, slow down there, Dr. F! No but please don’t, 75 ccs was awesome, thank you. I am now at 525 ccs on the left and 550 ccs on the right. We’re almost even!!!!

At next week’s fill with Maria, I will get 75 ccs on the left and 50 ccs on the right, putting me at 600 ccs on each side. I’m sure what you all want to know is what cup size is that?!

Yes, I’d like to know that, too. So this morning I started to investigate.

The world of tissue expanders and breast implants is terrifying. I have emerged from the deep, dark pit of the Interwebz even more confused than when I started.

This is what I have discovered: I have two Natrelle Style 133SX tissue expanders. They are each 14 cm wide. According to the Natrelle catalog, they have a height of 12 cm and a projection of 7.1 cm and are considered “extra-projection range.”  What does that all mean? No idea.

At this point, I am abandoning the science of it until I can talk with Dr. Festekjian, Maria or Jeani about it in person next week. Instead, I am going to play a kind of twisted form of dress up: the Breast Implant Rice Test! Or, in my case, The Breast Implant Israeli Couscous Test!

A few months ago, Jeani explained this test to me but I brushed it off as pretty much ridiculous. However I came across it again today and decided to just try it. 7/8 cup of Israeli couscous and a knee-high nylon sock (sorry Mom) in hand, I ventured into my room.

If “gummy bears” are the Prada of the implant world and silicone is the Coach, then Israeli couscous and nylons must be the Walmart brand.

Why 7/8 cup of Israeli couscous? Well, the handy little chart from www.justbreastimplants.com said that 1 cup of rice was roughly equivalent to 236 ccs, while 3/4 cup was about 177 ccs. Since my tissue expanders can hold a maximum of 750 ccs and my right expander is currently at 550 ccs, I wanted to experiment with about 200 ccs…so 7/8 cup of couscous sounded accurate.

Here’s the results–keep in mind I only tried the test on my right breast, since my left tissue expander is still a few ccs smaller:

Now obviously it looks a bit awkward with the rest of the nylon sticking out, but the test was more successful than I expected.

Yet I still don’t know how I feel about the size potential! The fact is that tissue expanders are shaped differently than breast implants. I need to find out from Dr. Festekjian what kind of implant he plans to use. Right now, when I look at myself head-on, my chest seems to be very filled out; but when I see myself from the side, it still seems very small. I guess this has to do with the tissue expander being wide?

Perhaps next weekend I will try the rice test again, but on both sides (since they’ll finally be the same size again!)

Can anyone speak to their experience with implant sizing?

In other news, I’m sick–but don’t worry, it’s (for once) NOT related to my tissue expanders! On Tuesday I started to develop a sore throat, and by Wednesday afternoon I could barely talk. I stayed home sick from work on Thursday. I felt AWFUL…couldn’t swallow because my throat was so sore, couldn’t sleep…finally saw a doctor on Friday and I’m on antibiotics now. I know, right–more antibiotics?! Ha. Let’s hope I don’t get sick for years after this, because all that nasty little bacteria is going to be SO antibiotic-resistant!

I’m feeling much better today. My mom is coming home today from Yosemite. I heard my dad on the phone with her yesterday, remarking about how I was a horrible patient. (Note to Dad: Yeah, yeah, stick it in your ear. Who do you think I got it from anyway? Plus, here’s a direct quote from “Jewish as a Second Language“, the book you gave me to read:…should illness or injury strike you, it’s your duty to stay sick as long as you can. Keep using those crutches. Prop them up where everyone can see them. Flash that sling. Enlarge that bandage. Who knows when you’ll be dealt this card again?“)

It’s a good thing Mom is coming home now, because it’s probably her fault I’m sick. Let’s think about this for a minute: where was my mom when I got my cellulitis infection? The Grand Canyon. Where was my mom when I thought I had another infection a few weeks ago? Yosemite. Where was my mom when I got sick this past week? Yosemite, again.

COINCIDENCE? I THINK NOT! Once again, my mom has found a way to SINGLE-HANDEDLY ruin my life.

OK, I’ll stop dicking around now–I hope you all know I’m just being a brat for the sake of humor and that it’s an inside joke with my mom that was started in like, middle school.

I only mention being sick this week because, as much as it sucks, it’s kind of cool in a way that it wasn’t related to my mastectomy or reconstruction at all! It was just because I’m a normal person who can contract normal person contagions from other normal people. I’m normal, ya’ll!

Now go wash your hands so I don’t get sick again, thanks.

Infection, Interrupted

Well, this is the longest I’ve gone without posting…I know I know, I’m a bad blogger! But better late than never.

Now, I know you’re all dying to hear about my trip to Vegas. I’d like to tell you about how awesome it was and how much richer it made me, but sadly I cannot report those glorious things…because I didn’t go! Whomp whomp

On Friday afternoon (August 24) I left work early for my scheduled fill with Maria, Dr. Festekjian’s wonderful nurse. I was supposed to go straight from UCLA to Long Beach where I would meet my friends and we’d hit the road to Las Vegas. But at the appointment, Maria noticed a slightly red spot on my left breast.

DUN DUN DUNNNNN (onomatopoeia anyone?). Red spots are not good, especially not for Her Royal Majesty the Queen of Cellulitis. I was pretty peeved because that spot had NOT been there in the morning.

Maria of course did the right thing by exercising caution, and in retrospect I’m glad she did—but believe me, in that moment I was not too pleased. I mean, come on…say it with me now…REALLY?! SERIOUSLY?! A RED SPOT…AGAIN?! #$*)(#@*$R JFAJFDSAF*#!)$#!

She decided to call Dr. Festekjian and consult with him. Well it just so happens that the good man himself was already stopping by UCLA (he spent the day working at the VA) so he came in to investigate. He poked and prodded for a while before determining that “he was not impressed.”

HOWEVER…given my history of infection, Dr. Festekjian decided to put me on antibiotics. He also advised that I avoid submerging myself in water (read: no swimming) and that I avoid sweating excessively (read: no 100 degree heat). Well, damn. Vegas in the summer without drinking, swimming and sweating just didn’t sound like very much fun.

Neither Dr. Festekjian nor Maria suggested I cancel my trip, but Dr. Festekjian did say that if the red spot worsened, I would need to come back in and possibly start IV antibiotics. BLEH! The thought of driving all the way to Vegas just to turn around and drive all the way back to Los Angeles was not very appealing.

I consulted my friends about it and they all agreed that it was not worth risking my health just for one weekend. We were able to reschedule the trip, and my friends still had fun doing touristy things around LA (they’re from Northern California). Side note: As much as it upset me to not be able to go to Vegas, I was still very touched by my friends’ response to the sudden change in plans. They were all so understanding and flexible, and even served as a sort of voice of reason for me when I was trying to figure out how to handle the situation. 

Even though we didn’t make it to Vegas, we still had a fun weekend. Thanks Kim, Jo and Jill!

OK, so fast forward to this past Thursday. I went to UCLA to see Dr. Festekjian, and he confirmed that the red spot was gone and that we could proceed with my tissue expander fills. I am pretty sure the red spot was probably not an infection; if anything, I think I just slept on my tissue expander wrong and the pressure created that discoloration. But I am happy that we did not just dismiss it. I’ve come too far on this road to let it get screwed up, so being cautious is necessary.

Since Dr. Festekjian and Maria decided against giving me a fill that previous Friday, I was behind 50 ccs. I did manage to talk Dr. Festekjian into giving me 75 ccs during Thursday’s appointment. So now I’m at 400 ccs on the left and 550 ccs on the right. We’re catching up, baby!

My next tissue expander fill is on Friday afternoon, and after that I’ll be…wait for it…MOVING INTO MY NEW APARTMENT!

Yep, that’s right. I’m saying GOODBYE to my parents’ place in Redondo Beach and moving out into the real world! I managed to find a relatively-inexpensive (by LA standards) apartment a few miles from my office. The biggest perk will definitely be skipping out on all of the traffic I’ve come to love loathe.

But I will miss my puppy Madeline and my mommy packing me lunch. =( Give it two weeks and I’ll be begging my parents to take me back!

I love Hendrix. Also, that is Bryce’s hand, not mine. I do not have man thumbs.

I hope everyone had a great Labor Day. Bryce, Hendrix, and I spent the weekend up in Yosemite. I’m happy to report that I went kayaking on the lake twice and I even worked on my shot at the archery range. It’s been about ten years since I last touched an archery bow so I’m a wee bit rusty, but I’ll be back to my Katniss status in no time.

The kayaking and archery did make me think a lot about my upper body strength. When all of my surgeries are over (hopefully November) I think my next “project” will be getting some freakin’ muscle. I am such a weakling! Does anyone have any suggestions for upper body workouts? And keep in mind that I have a very short attention span when it comes to exercise. Fun and shiny=good!

Oh you know, just training for the Hundred Years’ War. BATTLE OF AGINCOURT, YEAH! [/nerd]

Expander fills resumed, Making Strides, and a bit of promotion

Last Thursday I had my first tissue expander fill since having the left expander inserted on July 30. It was AWESOME–simple joys, right? I was so excited and anxious that I told myself I was going to let Dr. Festekjian do the fill without numbing me up. Of course I reneged on this decision, since I am a baby when it comes to pain and just the sight of the syringe and needle scared me into the numbing cream.

The numbing cream only delayed the process by a few minutes so it was totally worth it; I could barely feel the needle go in. Dr. Festekjian filled up the left side with 75 ccs of saline. We are going to let the left tissue expander “catch up” to the right tissue expander before we resume fills on that side. Right now my left side is at 325 ccs and my right is at 550 ccs. Each tissue expander can accommodate 750 ccs of saline. I anticipate I’ll need about nine more fills (at 50 ccs each) until I reach the maximum capacity.

On Sunday morning, Bryce and I woke up bright and early for the Making Strides Against Breast Cancer 5K walk in Santa Monica. I stayed up late the night before preparing my talking points for the survivor’s speech (or in my case, previvor). Bryce and I both wore Demand Media team t-shirts for the event and pink sunglasses; he looked very sexy in his pair, I must say.

Team Demand Media–I’m so proud to work with these people!

The event was small (compared to the 3-Day walks I’ve done in the past) but very successful and well-organized. There were at least 100 people there, and the sponsors included Demand Media (whoot whoot represent!), Equinox gym, and Go Country 105—my favorite radio station!

My “previvor” speech came after the address by an American Cancer Society rep. Since it was rather toasty outside, I tried to stay concise and upbeat. I ended up ditching my page of talking points as soon as I got up on stage. I mean, who am I kidding? This is MY story—I know it by heart!

I talked about my mom’s multiple cancer diagnoses and how I reacted to each one. In terms of her second diagnosis, I mentioned how angry and frustrated I felt and how many questions I had, and that those questions were all answered when we found out about the BRCA mutation. Then of course I talked about my own decision to have a prophylactic mastectomy, and though I’m fortunate to have that option, hopefully research will make it possible for my future children to have another more “civilized” option. I really wanted to connect a story about breast cancer to the walkers and their fundraising efforts, to let them know that the money they raised was going to help someone in a tangible way.

I walked in honor of my mom and my cousin Robbie.

After my speech, the walk started. We marched around a local park for about an hour; apparently four laps around said park is equivalent to a 5K. Once everyone was back from the walk, Kate (the Demand Media employee who helped plan the event) announced that we’d raised over $18,000! I was very impressed.

Kate did a stellar job organizing the event. It must have been very stressful for her to plan a charity walk while keeping up with her full time job. But she pulled it off and I’m proud to work with her. Good job, Kate!

Thanks for organizing the event, Kate!

Now, onto that product promotion I mentioned in the title of the post. I don’t do this very often so I feel that I’m allowed to include it now!

First off, my fabulous and talented mother Shirley Horn has decided (after much badgering from me) to launch her own online store, called Precious Survivors. What is she selling? Well, that is a good question! CUSTOM DRAIN POCKETS AND MASTECTOMY PILLOWS AND HAND-PAINTED ORNAMENTS! (Gee, that sounds swell!) Inspired by Trisha’s mastectomy and her hunt for a mastectomy bra, Mom created some adorable drain pockets. They have velcro attachments to connect to a mastectomy bra, and they are so colorful and cheerful. And they’re only $6 a pair!

Mastectomy pit pillows made by Shirley Horn

She is also selling handmade post-surgical “pit pillows”, heart-shaped pillows to rest under your arms after a mastectomy. My friend Kim gave me a pit pillow for my mastectomy, and it was perfect; it wasn’t too hard or too soft and my arm rested in the crevice without any pain. The pit pillows currently listed are Hello Kitty print, but Mom will take custom orders for a different fabric.

A portion of all of the sales from Precious Survivors goes towards breast cancer programs, such as the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. Dragon boat racing is a great way for breast cancer survivors to prevent lymphedema, which can be caused by lymph node removal.

If you’re looking for a gift to give a loved one who is about to have a mastectomy, check out the Precious Survivors storefront. Mom created these products based on both of our experiences with mastectomies, so they are definitely patient-approved!

Now onto the other promotion. A few weeks ago I received a lovely email from a woman named Ann Victor, the president of PerfectCami, a fashion company. Recently Ann has designed a line of camisoles aimed at the post-mastectomy crowd. She graciously sent me a few to try out, and I LOVE them.

The camis attach to your bra straps and therefore stay in place when you bend over. I am always worried about people seeing the inserts on my left side; the camis prevent any accidental insert flashing! They also work nicely to cover bra cups and straps. The bras I wore before my mastectomy were underwire and the cups did not extend high up on my chest; the soft bras I use now have more fabric, so it’s difficult to wear any relatively low-cut shirts or dresses without the bra peeking through. The camis hide the bra perfectly.

If you’re interested in ordering any of the camis, visit the PerfectCami website. They come in a variety of colors and styles (I’ve got red lace, black lace, white striped, black striped, leopard and a few more!) and five sizes.

OK, signing off now. I have to get ready for my trip to Vegas this weekend! Have a great weekend everyone.