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.

 

My first tissue expander fill is tomorrow,

and I’m SO EXCITED!

Okay, so it’s not my first fill ever–I’m already up to 550 ccs on my right side–but it’s my first fill after losing my left expander to an awful cellulitis infection! I’m just feeling grateful that my reconstruction process is finally underway again.

Last Friday at work we had a “Think Pink” party to raise money for Making Strides Against Breast Cancer, a 5K walk in Santa Monica this weekend. We have a Demand Media team for the event! Needless to say, I’m pretty proud of my company.

The Think Pink party was a great success. There were pink ribbon cupcakes, bottles of rosé wine, pink cookies, raffle tickets and more, each for a $1 donation. We raised over $600 in just an hour.

The coworker who organized the event asked me to share a bit of my story, as a way to remind people that no community or person is immune to breast cancer. I am obviously very open about my BRCA mutation and my mastectomy, so I was happy to speak. The strangest part was revealing my age to my coworkers! If they didn’t already think I was a baby, now they know for sure.

Reflecting on the last year as I told my story was a great reminder to myself about why I made the decision to have a prophylactic mastectomy. I talked about my BRCA mutation, my mother’s cancer diagnosis, my mastectomy, my infection…and then I remembered what my brother said about the choice between “something fatal” and “something fucked up.” I quoted him, and everyone laughed, but it’s such an accurate description.

I closed my spiel by saying that hopefully in the future, the money raised for breast cancer research will make it possible for women my age to not be faced with such drastic choices. Hopefully there will be another option out there.

I didn’t have another option, but I am still grateful that I had some kind of choice. Because even though the last few months have been very trying–especially with the infection–they have been cancer-free. They have been on MY terms. And I am so very fortunate for that.

My amazing coworker Kate organized the party and is also an organizer for the entire walk.

The Making Strides Against Breast Cancer walk is on Sunday, and I’ll be speaking again at that event. I’m very excited to participate, especially since it’s been more than two years since my last charity walk!

When I found out Demand Media was participating in the event, I was ecstatic. It gives me a very warm feeling to work at a company that backs this important cause. My coworkers have been so supportive of my entire situation.

It’s crucial to be a part of an understanding community. I am realizing that more and more. On Monday evening, my mom and I had dinner with Trisha and her mom Linda. Linda flew out from Texas for Trisha’s surgery (which is TODAY–will get to that soon!) Chatting with them over dinner was relieving and comforting. We were able to connect and speak honestly without any judgment. I am so thankful to have them in my life!

I am also happy to be a member of a blossoming web community of BRCA-positive individuals and young women who are taking their health into their own hands. Being able to post random questions (about surgery, mastectomy bras, drains, scars–anything!) and get fast and honest responses is priceless. Social networking is a miracle!

Now, an update on Trisha: her prophylactic mastectomy was today at noon! I haven’t heard from her mom yet, but I’m assuming that no news is good news and that everything is going well. On Sunday I visited her at the Mansion and we spent the afternoon by the pool. I wore my mom’s new kick-ass pink one-piece bathing suit. (Side note: I’m pretty sure I am the only person in history who has ever worn a one-piece at the Playboy Mansion.)

Trisha has such a positive attitude towards her mastectomy. She introduced me to quite a few people at the Mansion on Sunday, and told all of them that I’d already had a mastectomy. That seemed to relieve them a bit; she is well-loved, so people worry about her. In a way, I’m visual proof that a woman can still have a very full and active life after a mastectomy.

Here’s Hef and all of the girls at Sunday Funday. Hef and I matched! He has good taste.

Hopefully I’ll get to visit Trisha in the hospital. I’ll try to at least post an update about her surgery and recovery, so check back for that!

UPDATE: I talked to Trisha on the phone for a few minutes around 7:15 pm! Besides sounding very groggy, she seems to be doing well. When I talked to her, she had been out of surgery about an hour and a half.

 

One week after the tissue expander placement

It’s been one week since my tissue expander placement surgery, and I feel great! I went back to work today and spent a long day (9 am-7 pm) in the office, sans pain medicine.

I’ll recap what last week was like:

After my parents and Trisha left on Monday, I did a bit of reading and then decided to go to bed. Sleep, however, did not come very smoothly. The pain pump that had earlier been my best friend turned against me by making me itch. It wasn’t the same awful head itching I felt when my Vancomycin IV started in April. It was more of a general body itching, but enough to wake me up every twenty minutes or so.

The nurse gave me Benadryl but that didn’t seem to help, so around 3 am we made the decision to switch from my pain pump meds (not sure what these were) to the painkiller Percocet. I was finally able to fall asleep for a few hours around 4 am.

By 6:30 am, Mom was in my room. Unlike at Ronald Reagan Hospital where discharge is 11 am, the Outpatient Surgery Center discharge for the special overnighters like me is very early (at 6:37 am! That’s a joke for Mom). And sure enough, Dr. Festekjian was in the room by 7 am, ready to kick me out.

He gave me instructions for the week, such as when to take my antibiotics and when I was okay to shower. He also cut off my stylish ace bandage bandeau bra and took out my PICC line. And he even agreed to pose for a photo, since he’s a blog celebrity and all.

Even early in the morning, Dr. Festekjian looks dapper…unlike me.

I spent most of Tuesday sleeping since I got little sleep the night before. Bryce did come over and we lounged around watching movies. On Wednesday evening my friend Kim visited after she got off work. We had dinner and went on a walk. I started switching from Percocet to regular Tylenol on Wednesday.

On Thursday I worked from home. Luckily my manager Jerri is very understanding of this strange and often complicated medical situation, so she helped me create a work project that would be doable from home: scrapbooking.

That’s right, I was paid to scrapbook. I work as an Associate Editor at eHow.com, and one of our new products is called Spark. It’s sort of like a bulletin board for the web; you can clip photos and text from around the Internet onto one space.  My Spark boards give instructions for creating scrapbook pages in a more visual format. You can see one I finished, How to Create Graduation Scrapbook Pages.

I also took a shower on Thursday. Aw, the first shower after surgery—pure bliss. I could have showered on Wednesday, but my PICC line bruise made me nervous, so I waited an extra day to be safe.

The bruise is horrendous. It looks like I was punched in the arm by someone very large and very angry. When I had a PICC line on my right arm in April, the bruising was minimal. When I first took a good look at this bruise, it really did freak me out. But I consulted Drs. Horn and Horn and they assured me that it was perfectly normal. And sure enough, the bruise has gone down.

Yes, I took that picture today, and yes, it does still look awful after a week. But you should see the other guy!

On Friday morning, Mom and I hopped in the car and drove up to Los Angeles to the Playboy Mansion to pick up Trisha to go shopping. This, however, was no ordinary shopping trip: we were in search of mastectomy bras and cotton breast forms! After giving Mom a quick tour of the Mansion, we headed to Miss Stevens, a lingerie store.

Mom was definitely a fan of Mr. Hefner’s digs.

Miss Stevens is a store known for its wide array of undergarments to fit unusual sizes and needs. My mom bought her mastectomy bras there and the one that I eventually wore, so no doubt the ladies there are well-versed in mastectomies. However it still felt surreal for Trisha and I to walk in–two young girls in their twenties–and ask for mastectomy bras and breast forms.

The lady at the counter did not miss a beat, and immediately shooed me to a fitting room. I further explained my situation to her, and finally unbuttoned my shirt to show the differences in size. The exact current measurements are 250 ccs of saline in the left tissue expander, 550 ccs of saline in the right tissue expander.

She presented me with various options, ranging from adjustable silicone forms to small bra cup inserts. The silicone forms are always nice, but man! were they expensive. The one she showed me was at least $250! I love myself and I want to look my best, but I am not going to spend that much money just to be even-chested for a month.

I opted for two cup-like inserts. Layered one on top of the other, they give enough shape to match the 550 ccs on the right. Once I am filled up a bit more, I will only need one of the inserts. And then soon (hopefully by mid September) I’ll be even on both sides!

The inserts ended up totaling only $12; pretty good compared to the silicone option. Trisha graciously paid for my inserts as a “thank you” for taking her shopping. Her search for a mastectomy bra was a bit more difficult.

Since she has such a small frame, even the smallest sizes of the mastectomy bras would end up being too big for her after her mastectomy. Sure she could pin them to keep them tight, but that would require constant adjusting…not fun or practical!

After much debate, she ended up buying a mastectomy bra that also works as a compression bra. I think it’s Amoena #2161. My mom used the same kind after her implant exchange surgery, and I have used it too, though it can be a bit itchy so I prefer my softer mastectomy bra. But it opens in front and the stretchy fabric will stay tight on Trisha; plus it has Velcro at the bottom for drain pockets to attach.

Of course it doesn’t actually come with drain pockets, which is so bizarre to me. Drain pockets are probably the cheapest thing to manufacture; they are just little scraps of fabric with Velcro on one side! But for whatever reason, many mastectomy bras don’t actually come with them. Luckily my mother the seamstress has some ideas in mind for Trisha’s drain pockets!

On Saturday morning I drove for the first time, up to the bagel store. Later in the evening I drove all the way to Bryce’s house, which is about an hour away. I definitely favor my right side when I drive so I didn’t feel much strain.

The pain meds finally caught up to me yesterday morning. I’d been mostly taking Tylenol for pain, but sometimes at night I did take a Percocet. I ended up having a splitting headache that started around 10:30 am. I rarely get headaches that are more than just a dull pain, so this one really took me by surprise. I called Mom, almost in tears, and she told me to try to sleep it off in a dark room with a cold compress on my head. The headache was gone by 1 pm (thanks Mom!) and I am officially OFF of Percocet because that was just too painful.

It’s funny how pain medication can sometimes cause more problems than the actual pain is worth.

Today I scheduled my post-op appointment with Dr. Festekjian. I’ll be seeing him on Thursday at 3:45 pm. Hopefully he’ll give me the all-clear to start my tissue expander fills the following week!

I leave you with this picture of me this evening with the two cup inserts in: WHICH SIDE IS SMALLER THAN THE OTHER?! It’s an optical illusion oooooooohhhhoooooh! (OK cut the crap, Rachel.)

 

Tissue expander placement surgery update

Well, it’s official: I am back on track with my breast reconstruction! My left tissue expander was placed this morning.

I spent all day yesterday chugging water; I must have consumed two gallons! I hate not being able to eat or drink after midnight the night before surgery. Since I was scheduled to receive a PICC line, I knew that drinking all of that water would make no difference for my veins. It’s just a mental thing.

But sure enough, as soon as I woke up this morning, I was thirsty. My mouth felt like the freakin’ Sahara today! Just knowing I can’t drink water makes my body trick me. Argh!

I arrived at UCLA around 7:30 am and had my PICC line placed at the radiology area of Ronald Reagan Hospital. The nurse who put in the PICC, Jessica, was very sweet and approachable. We talked the whole time she was working on my left arm, making it go by quickly. The pain was minimal, just a bit of a pinch from shots of numbing medication.

After she placed the PICC line, Jessica walked me back to the check-in area and told me what I couldn’t do with the PICC line in. The best “no-no” was scuba diving…she actually told me I couldn’t scuba dive. I laughed it off, but she said that she once had a patient go scuba diving with a PICC and it got infected. I mean, really? Come on! How thick can you get?

Needless to say, I have NO plans to scuba dive.

Mom and I walked from Ronald Reagan Hospital to the 200 building and headed up to the Outpatient Surgery Center around 8:50 am. I’m quite familiar with that area since Mom had her oopherectomy and implant-exchange surgery there in February. I checked in and was brought back to the pre-op area almost immediately.

I spent the next hour sitting in bed with my attractive blue hospital gown and hair net as nurses and doctors bombarded me with questions. “Do you have any allergies?” Sulfa. “When was your last surgery?” April 30. “Did you get a PICC line?” Yes, notice the strange tube coming out of my arm.

Finally, my best friend, the man of the hour, the genius himself Dr. Festekjian came to see me. He marked up my chest like a ninth-grader graphing in Geometry class. Symmetry is good, so he wanted to give himself the best markers for placing the tissue expander! Hey, it works for me. He’s the artist and I trust his judgment!

Next I was given some calming medication through the PICC line, and then I was wheeled back into the operating room. Things get blurry from there, but I do remember thinking that the OR was very cluttered and bright. Doctors and nurses were all around me, covering me in blankets and poking me with monitors…

And then I woke up!

That’s one happy camper! Notice my stylish bra.

I think I was out for about an hour and a half. Since my procedure was outpatient, they did not give me a pain pump. BADDDDD idea. Of my now three surgeries (initial mastectomy, tissue expander removal, and today’s tissue expander placement) this was by far the most painful! My entire left side felt very heavy and there was a lot pressure. The nurses kept giving me pain meds through the PICC line, but I was not having it.

Finally, Mom took action. “How long does she have to be a 10 out of 10 on the pain scale before she can get an order for a pain pump?” You go, Mom! As soon as she asked that, Dr. Festekjian was paged and a pain pump was installed.

Once I got the pain pump I felt infinitely better.

Dr. Festekjian has me on IV antibiotics for precautionary measures, so I’m staying overnight. My room is very small and has a stunning view of a parking lot. Unfortunately there is no bathroom in my room (unlike the rooms in the actual hospital) so I have to walk into the hall to use the bathroom, but that’s okay because I want to be as mobile as possible. Lying in bed all day can get very boring and even a bit painful.

I’ll be discharged early tomorrow morning (by 7 am) and Dr. Festekjian will send me home on oral antibiotics. If all goes smoothly, he’ll start my tissue expander fills in two weeks. I think he filled me up to 200 ccs when he placed the expander, but I have to wear my lovely ace bandage bra for a while so I can’t really tell.

Trisha came to visit me around 6:30 pm. It was so nice to see her! She brought me beautiful purple flowers. Purple is my favorite color. We chatted for about half an hour and then my parents showed up with dinner for me, so we all sat around talking for a while.

Aren’t they beautiful? Thanks, Trisha!

Talking to Trisha was great because she understands what I’m going through. Her prophylactic mastectomy is scheduled for August 15, so it’s been on her mind a lot. I must brainstorm what I can give her for a pre-surgery care package!

I look like a giant compared to Trisha, she is so petite!

Trisha and my parents left about 45 minutes ago. I’m going to try to get some sleep now since I haven’t slept much today.

Thank you all for all of your support. I really appreciate the suggestions you left on my last post for evening out my tissue expanders–I’m definitely going to try some of them out!

P.S: Guess what I don’t have…DRAINS!!!! Oh, happy day!

 

I see a tissue expander in my future…

Can you believe it’s been three months since that awful episode of cellulitis? I really can’t. But it’s true! And you know what that means…

TISSUE EXPANDER REPLACEMENT SURGERY–YAY!!!!

This coming Monday, July 30, I’ll be making the trek back up to what seems like my home away from home, UCLA Medical Center. At 8 am I am scheduled to have a PICC line placed at Ronald Reagan hospital; following the PICC line procedure, I’ll head over to the UCLA Outpatient Surgery Center in the building next door to have my tissue expander placed.

It was a bit of a hassle to get approval for the PICC line, but I’m so glad we were pushy (shout out to my mom for making it happen!) For those of you who don’t remember, I have BAD veins. They run and hide when I get within five miles of a medical facility.

When I know I am going to have my blood drawn, I prepare the day before by drinking a lot of water to pump up my veins. When I was admitted to the hospital for a cellulitis infection in late April, my veins were not prepared for needles and I was already dehydrated from being sick. When the nurses tried to draw blood, it took them three pokes (with multiple people involved) until they had success; when they tried to start IV antibiotics, it was even worse.

I ended up being poked for blood and IVs about ten times during that hospital stay because my veins would either not produce any blood or they were too fragile for the strong antibiotics. By the third day at the hospital, none of my veins were strong enough for a simple IV, so I was switched to the PICC line.

The PICC line was my savior. I never thought I would love something attached to a needle as much as I loved that PICC line.

“PICC” stands for peripherally inserted central catheter. It is a small needle attached to a port that is inserted into a deep vein (in my case, in my upper right arm). It’s then fished through to another vein close to the heart. A PICC line can stay in place for weeks without being changed, and it can be used to draw blood and to administer fluids such as antibiotics. For those of you who know my family, when my dad was at UCSF in 2010/2011 with a foot infection, he received routine antibiotic infusions through a PICC line.

An illustration of how a PICC line works, from Macmillan Cancer Support’s website http://www.macmillan.org.uk.

Once my PICC line was inserted in April, the rest of my hospital stay was a breeze. I didn’t feel any burning from the antibiotics and no one had to poke me in the middle of the night for blood tests.

This time around, my mom and I have been adamant that I receive a PICC line from the start. I know Dr. Festekjian is going to put me on IV antibiotics as a precaution, and I know I am going to be put under anesthesia. Both of those things mean needles. Any needle poke runs the risk of infection; with my non-compliant veins and history of infection, why would I want to take any chances? PICC line, here I come!

In terms of the actual tissue expander replacement surgery, I anticipate that it will be pretty easy. It’s performed in UCLA’s outpatient building, which already makes it seem more minor. There’s a good chance I will stay in the hospital overnight just to be safe, which is fine with me. And I only plan on taking one week off from work, as opposed to the three I took after my mastectomy surgery in March.

To be honest, the biggest concern I have is what I’ll look like with my newly-inserted tissue expander. I’ve really adjusted to having my cotton prosthesis and Waterproof Falsie; they are the perfect size to match the 550 cc tissue expander on the right side! But when Dr. Festekjian puts the new tissue expander in the left side, he will probably only fill it up to about 200 ccs; tiny in comparison to the other one!

Does anyone have any suggestions for what I can do to not look lopsided? There will probably be at least one month of unevenness; I don’t expect to start my saline fills until two weeks after this surgery. And even when the fills do start, it will take a few sessions before my left tissue expander is equal to my right expander.

Okay, nothing could be more lopsided than this: tissue expander on the right side, nothing but chest wall on the left!

I’d love to hear what people think. My initial thought is to use socks or something to fill empty bra space. Anyone else have a better idea?!

I expect to post an update on Monday or Tuesday following my surgery, so be on the lookout for that. And all positive vibes and thoughts are appreciated as I get ready for Monday! Thank you. =)

 

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

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

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

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.