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?

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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.

 

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

Hey yo!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Calming down and getting on with life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Second tissue expander fill, and volunteering for The Jester & Pharley Phund!

On Thursday afternoon I had my second tissue expander fill with Maria at Dr. Festekjian’s office. This time, Maria put some numbing cream over each tissue expander port. During my first fill Dr. Festekjian skipped straight to the biodine cleaning agent, so it was too late to put on the numbing substance; that’s why I could feel the needle pinch. At this appointment, however, I could barely feel anything–it was great! I will definitely be asking for the numbing cream from now on.

Maria put 50 ccs of saline into each side. I was a bit bummed that it wasn’t more, but I also understand that she wants to be cautious about not irritating my tissue and muscle too much. At least she filled up the left side! I am now at 350 ccs of saline on the left and 425 ccs of saline on the right.

After Maria did the tissue expander fill, Jeani (Dr. Festekjian’s assistant) came into the room to talk to me about silicone implants. She had a handy little spinning paper tool that let her see the minimum and maximum size for a silicone implant based on the width of my breast area (which Dr. Festekjian has determined to be 14 cms on each side.)

She also brought with her a few sample implants! I “tried” them on for size, which was fun but also strange! At this point I don’t really remember what my breasts looked like before surgery–I’m so used to the small size now. That being said I definitely want to go back to my “normal” size. Next week I am going to bring in one of my bigger bras and try on the different implant sizes with the bra. I’ll post pictures to get my readers’ opinions!

I didn’t feel any soreness after my tissue expander fill. However on Sunday and again this morning I’ve been in pain, particularly on the left side. When I raise my arms too high or stretch them to the side it hurts–a short of sharpness pulses through. I’m not sure what’s causing it, but it might be my sleeping position. On Saturday night I slept for a while on my stomach, which is the first time I’ve done that since before my mastectomy. I feel fine while I’m sleeping–no discomfort or soreness. Last night I slept the same way for a while and the pain is back again. I just don’t understand how the pain could be related to the sleeping position–wouldn’t my right side hurt a lot more, too?

Tonight I need to make an effort to not roll onto my stomach while sleeping. I took some pain meds this morning and decided to work from home so I could rest my arms. Hopefully the pain improves throughout the day!

Now for something more uplifting:

On Sunday I was lucky enough to help out a great cause during the LA Times Festival of Books at USC. I volunteered at the booth for The Jester & Pharley Phund, an organization which focuses on helping sick kids and promoting literacy. The story of the organization is touching: it centers around a book called The Jester Has Lost His Jingle, written by a young man named David Saltzman. During his senior year at Yale, David was diagnosed with Hodgkin’s disease. The Jester was created for his senior project. He died right before his 23rd birthday in 1990. The Jester is about finding happiness, laughter, and hope in an often depressing world; in fact the title character brings laughter back to the world after he talks to a little girl with a tumor.

After David’s death, his family worked to keep their promise to him that The Jester would be published. And they certainly fulfilled it! Over 325,000 copies have been published, and they are now taking orders for the first bilingual (Spanish-English) edition of the story.

David Saltzman, author of The Jester Has Lost His Jingle.

The Jester & Pharley Phund is the non-profit organization run by David Saltzman’s mother Barbara. Not only does the Phund donate copies of The Jester and the accompanying dolls to children at hospitals, its members also run literacy programs like Read-A-Thons in local schools. While volunteering yesterday, three of my fellow volunteers were fifth-grade students and their teacher who had learned about The Jester through a school program.

Barbara Saltzman and her staffers Amy and Connie were all very welcoming and grateful for the help. I stayed for about 2.5 hours and helped to sell books. When I left, Barbara gave me my copy of the book, signed by the Jester’s Mom!

It was so refreshing helping out yesterday. I love the way the Saltzman family has turned a sad story into an inspirational message. If you’re interested in purchasing a copy of the book, please visit the To Order section of TheJester.org.

After helping out at the booth, I went exploring around the Festival of Books and I met up with Teresa (from The Dog Lived blog) and her boyfriend. I stumbled across Teresa’s blog when I was doing a Google search of Dr. Karam way back in November. She was one of his patients. She turned her story of breast cancer and her dog’s cancer (he’s an adorable Beagle named Seamus) into an awesome blog, and soon that story will be turned into a book! I can’t wait to read it. It was really nice to meet Teresa in person…now I need to meet Seamus.

Well, that’s all for now! Gotta get back to work.

 

Shopping for the Post-Mastectomy Patient

Let me start this post with a warning: Dad, you might not want to read this. It’s about me…shopping…for clothes. (“But why do you need more clothes?!” I can hear the groans from miles away.)

We’re more than halfway through April and I live in Los Angeles. Temperatures are steadily rising, and twenty-somethings are shedding their winter coats. It’s officially sundress season. And let me tell you, I need a new sundress—desperately. My current collection is becoming old, worn, and ill-fitting. I want a dress that is long enough to wear to the office, but that isn’t overly formal.

I received a few gift cards for my birthday, so on my lunch break yesterday I ventured to the 3rd Street Promenade in Santa Monica to hit up the haven of cheaply priced colorful goodness known as Forever 21. I love Forever 21. Every time I go in there it looks different. There is so much selection and it is so inexpensive. It’s the perfect place for getting out of your fashion comfort zone.

After twenty minutes of rack-searching, I headed to the fitting room with six sundress options. The results? UGH.

Shopping after a mastectomy sucks!!!!

Dresses that would normally work for me, such as an empire-waisted frock, look awkward now. I can’t fill out the top of those dresses, so I have to try a smaller size; but when I go smaller, my hips and tummy don’t fit!

Trying out a style with less support around the bust doesn’t work, either: having smaller breasts makes everything else appear bigger, so although I may fit into a dress, I feel fat in it.

These are three of the Forever 21 dresses I tried on yesterday. I liked the one on the right the most but still didn’t buy it.

There were two dress options that were EH. They didn’t look bad on me, but I wasn’t in love with them. In the end I left dress-less (though I did buy a really cool soft bra!). I didn’t like the dresses that much and Forever 21 clothes tend to shrink, quickly taking them out of the office-appropriate zone.

But I still really want a sundress! So now I have a dilemma: do I go to a nicer store such as J.Crew and buy a more expensive dress now, or just wait a few months? The problem with buying any dress or top now is that it might not fit me in two or three months when I get my silicone implants. At the moment, my tissue expander breasts are probably around a small B cup. Tomorrow I get my second saline fill; they will probably become a large B cup. Next week they could be a small C…and you get the picture. I’m probably going to end up with something that looks like a D cup (about my size before surgery).

It’s frustrating. I like to shop, but I need to be fiscally responsible. It doesn’t make sense to blow money now on items that might not work in a few months. But…meh! I want a sundress!

I think the key to shopping successfully after a mastectomy but before the final reconstruction surgery is to look for more loose and relaxed styles that one can “grow into.” For me, tight items will look awkward now and will definitely not fit in a few months. I want to avoid dresses that are too shapeless, such as large smock or sheath styles, because then I might feel frumpy and look like I have something to hide. I think that an A-line style with a belted drop-waist could be my best solution.

What do you think? Any suggestions?