Tissue expander placement surgery update

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

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

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

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

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

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

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

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

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

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

And then I woke up!

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

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

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

Once I got the pain pump I felt infinitely better.

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

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

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

Aren’t they beautiful? Thanks, Trisha!

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

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

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

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

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

 

I see a tissue expander in my future…

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

TISSUE EXPANDER REPLACEMENT SURGERY–YAY!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Back to spin classes

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

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

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

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

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

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

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

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

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

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

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

Memorial Day weekend and the completion of my bikini!

I’m sorry it’s been over a week since I’ve written. Not much happened last week, besides going to work each day.

HOWEVER…last weekend…well, that was awesome!

On Thursday I left the office at 1 pm and met Bryce, Danielle, and Danielle’s boyfriend John at my house at USC. Bryce’s best friend (also named John) and his girlfriend Wdee also met us there. Around 2 pm, after packing the cars, we all got on the road to head up to Camp Horn in Northern California.

Camp Horn is our home away from home, our sanctuary in the Sierras, our lair by the lake. It’s located in Pine Mountain Lake, a gated community within the town of Groveland that’s situated just 26 miles west of Yosemite.

The Memorial Day trip to Camp Horn had been planned for over two months, but after my tissue expander was removed, I started to really dread the idea of going up there. Sure, Danielle and Bryce said that we didn’t have to go swimming or kayaking in the lake, but I just knew I would be miserable staring at that beautiful glassy water.  I was almost ready to call off the trip. That was until the idea for my bikini was born!

Once I realized I could still enjoy the water even without my left breast (thank you, Waterproof Falsie), I was so excited for our trip. And really, it was everything I wanted it to be.

The first thing I did when I unlocked the door to Camp Horn on Thursday night was try on the bikini…and ohmigawd, it was perfect. Seriously, my mom is a genius. I was so so so so so so happy with how it looked that I wore it around for the next hour.

Here’s me in my awesome bikini! Can you even tell that I’m missing a boob?!

The thick straps on the bikini were very supportive so the Waterproof Falsie didn’t sag, and you couldn’t even see the pocket it sat in because my mom did such a good job with the sewing.

When I went in the hot tub, the Waterproof Falsie bubbled a little bit (tehehe) but only as much as any bikini might bubble from air build-up. And once I hung it up after getting out of the water, it only took a few hours to dry! The bead system on the Waterproof Falsie works very well. I highly recommend it for any post-mastectomy ladies who are looking for an inexpensive waterproof prosthesis!

Hot tub time!

The weekend was filled with lots of food (the boys love to barbecue), some gambling at the local Indian casino, a visit to Cover’s Apple Ranch, tons of karaoke (“A Boy Named Sue,” anyone?), a few games of beer pong, daily hot tub soaks, a rifle shoot-off, five caught fishies, and my favorite activity: kayaking!

Look at me, kayaking like a mad woman on Pine Mountain Lake!

For the first few days, the weather was rather cold and drizzly. But on Sunday the clouds broke, the sun came through, and the temperature got hot! We threw the blue kayak (named Prospero) into the truck and brought it down to the beach. My mom’s pink sit-on-top kayak was already down there. Bryce and I kayaked around the lake twice on Sunday. I spent almost an hour and half on the water.

I’m very happy to report that my arms and upper body didn’t hurt at all from the kayaking. I was concerned that the mastectomy would limit my range of motion for paddling and that it would affect my stamina. Much to my pleasant surprise, I was fine out on the water, and the next morning I had no soreness in my upper body. Yay!

All in all, the weekend was awesome. The only downside is that I have a wicked sunburn on my stomach and thighs. Naughty Rachel! I really need to start taking sun protection seriously. Does anyone have a recommendation for spray-on sunscreen that is high in SPF and non-comedogenic? I have oily and acne-prone skin, so I need to find something that won’t clog my pores. I have a good sunscreen for my face, but I want to find a product that is easy to apply for body coverage.

On a closing note, I want to take a minute to speak to any ladies out there who have lost an implant or a tissue expander after a mastectomy. I know it looks super awkward right now, being completely flat-chested on one side—but don’t let it stop you from doing what you love and being who you are. Get creative with your appearance and your solutions. If I hadn’t remembered how talented my mom is at sewing, I bet my awesome weekend swimming and kayaking would have never happened. If I hadn’t explored my options (such as visiting the kind ladies at Intimate Image who set me up with the Waterproof Falsie), I would still be cursing at the idea of putting a cotton prosthesis into a bikini top.

It sucks right now, I know. But remember that this struggle is really just a little hiccup, and you’ve got to do what you can to make it better for yourself.

Here’s what the bikini looks like from the inside, with the pocket sewn in and the prosthesis inserted.

 

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!

Graduation, my return to work, and a bikini top!

Wow…what a weekend!

On Friday I graduated from USC. It seems like only yesterday my parents dumped me in my freshman dorm with a pile of stuff, and now eight semesters, 128 units, a few scholarships, and quite a few dollars later, I am officially a graduate!

Here’s just part of that pile of stuff from my freshman year. I think I cut out that picture of Michael Phelps and put it on my binder.

Graduation, or the Dementor Convention as I like to call it, was a long affair. The first half was the main ceremony in which the graduates were recognized “en masse.” Christiane Amanpour was our commencement speaker. She did a good job, though the speech could have been a tad bit shorter. Honorary degrees were bestowed (if you donate enough money, you too can receive an honorary degree from USC!) and we heard from the valedictorian (“Well I didn’t vote for you!”). At the end all of the dementors (read: graduates) were shooed away to their satellite ceremonies.

I dun gots me an edumucation!!!!

My satellite ceremony was held on the football practice field. Since the USC Dornsife College of Letters, Arts & Sciences is so big, we were split up into four random groups by major. My major, Narrative Studies, is really new and no one knows about it (I think there were like, five of us graduating with that major) so we were clumped in with the English department.

The satellite ceremony was short and sweet, even with the reading of each graduate’s name, so we were done by 12:45 pm…just in time for lunch! My parents and I piled into the car (which Mom had sneakily parked in a NON-EXISTENT SPOT, that trickster) and headed for Canter’s Deli…om nom nom!

At Canter’s we grubbed on everything in sight. I did stay true to my vegetarianism by avoiding the corned beef, but it was difficult. Corned beef from Canter’s is sooooo delish. During lunch we were interviewed for a Travel Channel show called Food Paradise. Apparently they are producing an episode about famous delis, and anyone who knows my father knows that he is a deli EXPERT. They got quite a few good sound bites from us.

My graduation dinner was on Saturday evening at Baleen, a restaurant in Redondo Beach. What a great event…my mom did a terrific job organizing it. There was so much food and everyone had a fun time. On Sunday we celebrated Mother’s Day with a family brunch and then some nice long naps. I gave my mom a Magic Bullet, the most sentimental and heartfelt gift EVER.

And the award for Greatest Mother’s Day Gift EVER goes to…

Today was my first day back at work. I work as an Associate Editor at Demand Media in Santa Monica, if anyone was wondering. I feel like I’ve had quite a few first-day-backs recently. I was actually excited to return since I’ve been pretty bored at home…but of course the Internet died around 2 pm and I had to go home early since I couldn’t get anything done without teh Interwebz! Hopefully it doesn’t crap out again tomorrow and I can actually get stuff done.

Now, I’ll address what you’re all dying to hear about: A BIKINI TOP. To be specific, MY NEW BIKINI TOP.

That’s right…I, Rachel Joy Horn, the boobless wonder, purchased a BIKINI TOP. That I will be WEARING. THIS SUMMER.

“…WHAT?!” I know, you’re shocked. Believe me, I was too. During the pity party I threw for myself after my tissue expander was removed I vowed that I would NOT appear in any sort of bathing costume this summer. It would just be too embarrassing and ugly, I thought. Instead I would wear a ridiculously oversized t-shirt like the fat kids wore during summer camp, because that would not draw any unwanted attention to me whatsoever.

Well, things changed when I started wearing my cotton prosthesis. I realized that I could trick the world into thinking I still had a left breast. So on Saturday morning I bravely ventured into Target’s swimsuit section, ready to break that vow.

I pulled out every bikini top that had adequate coverage (e.g. not triangles) and good straps. My mom, the expert seamstress, gave me guidelines for what kind of top would work best to support a prosthesis. I had brought one of the cotton forms with me and tried it on with each bikini top. At last I zeroed in on the perfect top: it had thick straps and a sturdy hook in the back, and it provided good coverage that could hide the prosthesis.

My new bikini top…yeahhhhh!

My job now is to actually find a waterproof prosthesis that my mom can sew into the bikini top. She said she could just use one of the cotton forms, but my concern is that I will become a human sponge. I’d rather find a gel insert that doesn’t absorb water. Does anyone have suggestions?

 

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!!!

 

Cellulitis 2012: Out Goes the Tissue Expander

Hi everyone. I apologize for not writing in a few days. While it’s true that I am insanely bored at the hospital, by the time I actually have a free moment to sit down and type out a blog post, I am usually exhausted and my eyes hurt too much so I nap instead. This one, however, is going to be exceptionally long. Get ready!

The last time I posted was Friday morning. My IV port had to be changed again since the Vancomycin beat up the first one too much. A new IV was put into my right hand.

Around noon I had an ultrasound on my left breast to check for fluid pockets. Images from the ultrasound revealed that there was one big pocket (I think about 5 cms) and possibly two smaller pockets. A few hours later, I was taken back to radiology to have that pocket aspirated. The radiologists inserted Lidocaine into the area to numb it up then used an ultrasound to locate the exact location of the fluid pocket. They then inserted a big ol’ needle into the area to extract it. In reality, the needle wasn’t very big at all, but since the ultrasound video magnified it it seemed like an eight-inch needle was poking around my body.

The fluid from this pocket was sent for a gram stain and a culture. The initial gram stain did not reveal any bacteria; however the culture could still grow into something after a few days.

When I returned from the aspiration, I noticed that the infection seemed to have spread around my breast. It all seemed very red. I was nervous. Friday was a very emotional day for me; I spent a lot of time crying and wallowing in self-pity.

My parents finally found out I was in the hospital on Friday evening. They had been on a road trip to the Grand Canyon since Tuesday April 24. I did NOT want to ruin their vacation by telling them about my hospitalization. I know, I know…I’ve heard from plenty of moms that it wasn’t MY choice if my parents wanted to come back early, and that parents want to know everything no matter the circumstances. But honestly, my family has had really bad luck when it comes to family illnesses and vacations and they deserved to see the Grand Canyon. Plus, I knew that my parents were planning to head up to our house in Yosemite after visiting the Grand Canyon. I wasn’t overly fussed about them not missing the Yosemite portion of the trip, since they can go up north another time. Instead of leaving Barstow to head north on Saturday morning, they stayed south to get into Los Angeles.

By noon on Saturday they were at the hospital. It was nice having them there, because they are medical-savvy and know how to talk to doctors. Having been through her own double mastectomy, my mom is familiar with the terms, processes, and side-effects. My dad, on the other hand (or should I say “foot”…wait for it!) , spent quite a few months in and out of UCSF in 2011 due to an infection on his feet. He had an IV of Vancomycin, too.

My friend Kaitlin stopped by the hospital on Saturday afternoon. It was such a pleasant surprise. She brought with her a book and an adorable little stuffed animal elephant. I immediately latched onto the fluffy gray creature. His name is Kapow and he’s my lucky elephant.

Kapow transfers some of his luck to me, trunk to nose.

On Sunday my infection did look better, and my veins were feeling even worse. The Vancomycin is so harsh that it burns my veins. Every time a drop went through the IV port on my hand, I could feel it sting. We had to take that IV port out. A transport nurse tried to place another IV; he poked me one more time and it still didn’t work. At that point, he made it clear that I couldn’t be poked anymore because the risk of infection was too high. If they wanted to put in any more antibiotics or draw anymore blood, I would need a PICC line, but the staff members who put in PICCs don’t work on the weekends.

Dr. Galanis, the Chief Plastics Resident at UCLA, came by to say that he was putting me on an oral antibiotic for the day and night and that I should be prepared to go into surgery on Monday morning, which meant no eating or drinking after midnight. Nothing was for sure yet, but the fact that my infection was getting worse was an obvious bad sign.

It was very relaxing not being connected to an IV at all on Sunday. I could shower and actually use both hands (during the first shower I had a plastic glove over my hand to protect the IV) and I could move around without worrying about accidentally pulling out the IV. I spent a lot of Sunday reading the book Kaitlin brought over, called Bitter Is the New Black by Jen Lancaster. It was a quick and somewhat mindless read about a former sorority girl turned business exec turned unemployed mess. I breezed through the entire book in one day, and was pleased by the happy ending, in which the writer gets a book deal! (Oh please let that be MY happy ending!)

On Sunday at midnight I started my eating and drinking fast. Not eating was easy. The heavy antibiotics have temporarily killed my taste buds and ruined my digestive system; whatever I eat comes out the other end pretty quickly. That doesn’t give me much incentive to eat. Drinking, however, is difficult; since I’m so used to being poked for veins, my natural reaction is to drink as much water as possible in order to plump them up. But I had to avoid the water so I wouldn’t be sick if I needed anesthesia.

On Monday morning my parents came over early, as did members of Dr. Festekjian’s team (Dr. Galanis included). They said it was highly likely that I would have the tissue expander removed, but they would leave the ultimate decision to Dr. Festekjian. He came in about an hour later and told me it would have to go because we were “fighting a losing battle.” At that point, I didn’t care anymore. I had read online about many women who stayed on some awful antibiotics for weeks, suffering the side effects, only to have to remove the tissue expander anyway.

Around 11 am I had a PICC line installed. A PICC line is a central venous catheter, a more permanent form of an IV; it goes through the arm and hooks up with a major blood vein near the heart. It can withstand the beatings from tough drugs like Vancomycin, and it can also be used to draw blood. While I’m here, I’ll never have to be poked again! Whoohoo!

Around 1 pm I was taken down to the OR to have my tissue expander removed. I woke up later in the recovery room and demanded ice. Whatever anesthesia they give me at UCLA is great; I am never nauseous after waking up and can guzzle water like it’s my job.

I was moved back up to my room about half an hour later. Someone from Dr. Festekjian’s team (I was still kind of out of it so I don’t remember who) came by to tell me that they had found some additional spots of infection near the tissue expander. They are culturing those right now.

In order to give me some nourishment, I’ve been hooked up to an IV drip since yesterday. There was also a drip for pain meds.

I felt fine when I woke up today. In the afternoon Dr. Galanis took a peek at my left breast (or total lack thereof at this point!) and said it was still red but it looked better. I have only seen the top of it through the tight bandage; it looks like a wrinkly skin crater. Ewwwww.

My parents visited in the morning, and then I was surprised by two friends from work, Garineh and Mia. They came with a card signed by everyone who sits around my desk and a Jamba Juice…perfect! Jamba Juice is the only food I’ve been eating. About an hour before they arrived, some beautiful yellow flowers were also delivered from my team at Demand Media.

Mia (on the left) and Garineh (right) came to visit me from work! Please note my lovely halter bra and drain. Yep, I have another drain.

And now I am going to tell you all the highlight of today…drumroll please…

I got to see a doggy!!!! After hounding (bahaha) the UCLA People Animal Connection for three days, we were finally successful in getting a real live dog to visit me. His name is Scout and he’s 10 1/2 years old. He’s a German Shepard mix and he is so sweet. He sat on my bed and let me pet him for half an hour. His owner, Beth, told me about the strict requirements for volunteer dogs. It was very impressive–she should be proud that her dog was accepted at UCLA!

Scout was so friendly!

I hope that I can continue to bother the People Animal Connection in order to receive visits from more of my four-legged friends. Animals brighten my day so much. I must figure out a way to sneak Madeline inside. Let me know if you have any ideas! Now off to bed.