Settling down, physical therapy, and a little bit of Pam Anderson

Let me start with a huge THANK YOU to the wonderful people who congratulated and endorsed me for the WeGo Health Rookie of the Year Award. Your kind words, thoughts and support always make me grateful. Nominations end December 31, and judging follows shortly. I will keep you all posted, and if you would like to endorse me or share my endorsement link with someone else, here’s the URL: http://badges.wegohealth.com/endorse-me?referrer=f7fq%22

It’s been exactly three weeks since the “big unveiling” after my implant exchange surgery. You’ll remember that I was less than pleased with what I saw in the mirror: my left nipple seemed to be about twelve feet higher than my right nipple, and all together the left breast appeared much smaller and tighter. I never thought I’d end up with a rack like Pam Anderson’s after the surgery, but I also didn’t think I’d end up looking like a little kid playing dress up with socks and tissues in her mommy’s old bra.

Hey…I’m a vegetarian too…maybe my boobs WILL end up looking like Pam’s after all!

Dr. Festekjian told me to give it time to settle, even going so far as to suggest that I STOP thinking about my breasts for a while. Fat chance, Dr. Festekjian.

Well I have to give the man credit–he was right. The left breast has settled a lot, looking rounder and less tight, and the nipples are also much more even. Dr. Festekjian said to wait two months, but it’s not even one month after the surgery and I can already see a big difference!

I guess he does know a thing or two about plastic surgery. He’s more than a pretty face, you know.

At my post-op appointment after the implant exchange surgery, he wrote me a prescription for physical therapy. I researched offices in the area that accept my insurance and landed on a place nearby called Women’s Physical Therapy.

In addition to standard sessions with physical therapists, Women’s Physical Therapy offers massage therapy, Pilates and yoga. They specialize in breast cancer rehabilitation, including post-reconstruction.

My first appointment was Tuesday, December 4. I met with a PT named Jenni. As it was an introductory session, we spent a fair amount of time discussing my mastectomy, complications, and ultimately reconstruction, as well as my goals (get strong in a healthy, safe way) and current exercise plan. Then she took some baseline measurements and stretched me out. The stretching was almost like an upper-body massage; she did a lot of kneading. Knowing that my left implant needs to drop and settle, she showed me stretches I can do at home to help.

Jenni then assigned me some resistance band exercises to work my triceps, biceps and shoulders. I’m supposed to do them every night, and right now they are so simple (just one set of 10 reps) that it takes less than five minutes.

I’ve met with Jenni twice, and I also had an appointment with the Pilates instructor, AnnaLisa. In high school I did mat Pilates DVDs all the time. (Side note: if you are ever in the market for a Pilates DVD, pick an Ana Caban series. AVOID MARI WINSOR LIKE THE PLAGUE SHE IS SO ANNOYING.) This Pilates session was NOTHING like the Pilates I remember! Nope…there was no Seal, no Corkscrew…not even a measly Roll-Up!

Instead AnnaLisa had me focus on very small movements using my muscles in ways I’ve never tried. There was no cardio involved, yet I felt like I did get some sort of a workout. It wasn’t easy! Who knew drawing circles in the air with my elbows could be so tiring? Oy, I was exhausted after!

After my sessions I’ve felt a bit sore, but it’s not alarmingly painful. It’s almost more of a pleasant indicator that the sessions are working and that my upper body muscles are being stretched out and strengthened just a little bit each day.

I have another session with a physical therapist on Friday, and then a few more next week. My schedule is spotty since I signed up with the office so late in the year and I can only stop by in the early morning or late afternoon. Hopefully I’ll be able to set up a steady plan for 2013.

Speaking of 2013, what’s everyone doing for New Year’s and the holidays? Bryce and I are going up to Yosemite for Christmas, where we’ll see my parents and my cousin Justin. Then we’ll be celebrating New Year’s in Redondo Beach. But before all that there’s my company holiday party this Friday night. I stumbled upon a Forever 21 gift card in my wallet (lucky find), so I’m going to treat myself to a new dress for the party–my first since the implant exchange surgery!

Well, I’m signing off. It’s bed time! Now if I could just pry this giant sleeping baby off of my lap…

photo(22)

I’m sorry Bryce, I had to do it. You just look too cute in that onesie.

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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. Also, if you are interested in seeing a comparison shot without the sports bra, send an email to rachel@tickingtimebombsblog.com. If I determine that you are not a creepy spammer/stalker, I will send you the pic.

 

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.

 

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! If any of my blogger friends are interested in joining these Facebook groups, please send me an email (rachel@tickingtimebombsblog.com) and I’ll add you.

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.)