My day at the Playboy Mansion–a preview!

WOW. What a day.

I was very fortunate to spend the afternoon and early evening at the Playboy Mansion today. And what’s great about it is that I was there…drumroll please…because of my BRCA2 mutation!

Proof that I was really at the Playboy Mansion: me, Hugh Hefner, and Trisha!

A few weeks ago I received an email from a woman named Trisha. In her email, Trisha wrote that she is also BRCA2 positive and that she got my contact info from my genetic counselor at UCLA. She said that she volunteers at the Revlon UCLA Breast Center during their high risk patient days, and is in the process of getting ready to do her own prophylactic mastectomy.

Oh, and she’s one of Hugh Hefner’s girlfriends and wrote that she lives in the Playboy Mansion.

Trisha and I exchanged quite a few emails about our lives and our experiences with breast cancer and BRCA. When she invited me to visit her at the Mansion for Sunday Funday, I was ecstatic. First of all, it’s such a fun opportunity, and additionally, I was eager to talk to her more about her thoughts regarding the prophylactic mastectomy.

In the next few days, I’ll be writing more about my afternoon at the Mansion. I’ll also be transcribing and then posting an interview I did with Trisha in which we discussed breast cancer, BRCA, mastectomies, body image…everything!

Check back soon to read the interview about my awesome day at the Mansion!

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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!

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. If you want to see what the infection looked like before my surgery, please email me. It’s not a pretty pic, but I’m happy to send it to you if you think you have an infection.

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.

Cellulitis 2012: Back in the hospital!

Yesterday I went to my 3 pm tissue expander fill at Dr. Festekjian’s office, which I was pretty sure would not actually be a fill since my left breast looked so swollen and red. Maria looked at it and agreed that Dr. Festekjian should definitely check it out. He came in, asked me about the time frame of what happened (I slept on my tissue expanders on Saturday night, felt pain on Sunday morning, etc.), and then examined the area. He then looked at me and said, “You have to go to the hospital.”

For a second there I wasn’t sure if he was trying to like, joke with me or something. I just kind of stared at him. He didn’t ask any questions or do any tests, just–“hospital!”

Then I started to get pretty upset. He mentioned the word “cellulitis” and said that I needed to get an IV with some heavy antibiotics. I asked him how often he sees this; he said each year, typically three or four patients will have cellulitis after a mastectomy…which is out of about 140 mastectomy patients. SWEET. Of course it would happen to me, the “young and healthy” patient.

Here’s a picture of my cellulitis…I’m not posting it directly in the blog because I know some people can get a little queasy from medical stuff!

He said he would take care of the arrangements to get me admitted next door at Ronald Reagan UCLA Medical Center (the hospital portion). After about 15 minutes, Maria came into the room and told me they were ready for me at admissions.

Now it’s lucky, I guess, that I am constantly driving from home to home (my apartment, my parents’ place, Bryce’s house) and half of my life is in my car. We walked down there and I was able to grab my laptop and charger as well as some clean clothes. The car itself presented a new problem: what was I supposed to do with it? UCLA is not very flexible with their patients when it comes to parking. Maria said I could leave my car there overnight, but unless someone took it out of the parking garage, went back in to get a new ticket, and parked in a new spot, I would get a parking ticket. Luckily my friend Kate said she’d help figure out the parking situation.

As we walked over to the hospital, I asked Maria what the next few days would be like. She said I should expect to be at the hospital for the entire weekend since Dr. Festekjian would be the one to make the ultimate decision to discharge me. She explained that over the course of the next few days, I would be given an IV drip of antibiotics in order to try to fight a broad range of bacteria (cellulitis, I’ve since learned, is just the name for a general bacterial skin infection.) If the antibiotics work successfully, the area will be monitored and given a few weeks to rest before my tissue expander fills continue.

If the antibiotics don’t work…well, this is the fun part of which I am really terrified: the tissue expander will be removed for at least two or three months.

I think we can all agree that the latter option sounds awful. Given those two choices, I definitely support the IV antibiotics route! (Though it’s not like I have an actual say in this…what Festekjian wants, Festekjian gets.)

Around 4:15 pm I completed admissions papers at Ronald Reagan UCLA Medical Center. I was finally assigned a room on the sixth floor (6347 West) around 5:00 pm. There’s a view of UCLA’s football field, and I can see the helipad–pretty cool.

To the left is the UCLA football field; to the top right is the helipad.

For the next few hours, I sat around…doing nothing. My lovely roomie Danielle showed up around 6 pm with salads and GIANT chocolate chip cookies. I was ravenous, and that meal hit the spot!

Someone came in to draw blood around 6:30 pm. FAIL. My veins are awful, I know. Everyone tells me how nonexistent they are. In the past, however, I’ve never actually had a problem getting blood drawn. He stabbed my left arm and a few minutes later dumped the vials into the toxic waste bin, saying “I’ll have to call in someone else.” He hadn’t gotten any blood!

I started chugging water. This was my first “surprise” blood test; usually I know it’s coming so I drink a lot of water the day before and morning of in order to plump up my veins.

Another woman came in about twenty minutes later. She continued to poke and prod me, looking for a good vein. Nope.

Bryce and his mom showed up later in the evening, which was a pleasant surprise. I had told Bryce not to worry about visiting me the first night since he was planning on spending the night at the hospital on Friday. My friend Kate, who goes to UCLA, also dropped by…with snacks and tampons! AND she was able to find a parking spot for my car–what a lifesaver!

Another phlebotomy specialist came in. He looked much more serious than the first two…he meant business! I explained that I really hated needles and would appreciate if he could apply some numbing cream before poking me. He spent a good deal of time lifting up my arms and using a tourniquet to try to find a vein. Finally he settled on a vein on the side of my left wrist. He applied the cream, and about fifteen minutes later, stuck in the needle. And…there was nothing. He poked around with the needle, trying to strike gold with a vein. NOPE.

He had to call in the big guns: an ICU nurse. Together, they poked and prodded even more. Finally, the ICU nurse (who was hilarious, by the way; a Londoner who my dad would have loved) zeroed in on a vein in the elbow crevice of my right arm. He slapped at it for a good three minutes, and as soon as it popped up again, he went for it…and there was success! We all clapped. At least not all of the efforts were in vain! (…pun…hahaha)

They took two vials of blood and also used that area for my IV port. Around 10 pm my nurse hooked up the antibiotics to the IV. Finally, treatment!

I know one of the antibiotics was Vancomycin, and boy, did it make my head itch!!! I learned online that an itching scalp is a common reaction from Vancomycin and that Benadryl should help it. My nurse injected some Benadryl into my IV, the itching stopped, and I finally got to sleep.

Members of the plastic surgery team (Maria included) woke me up bright and early at 7 am today. I don’t know when they arrived at work, but I’m still amazed at how happy and put-together they all were. Give me a break! I’m lying in bed with hair like Einstein’s from all of the itching, and  then these beautiful, smiling people suddenly surround me. It was a sneak attack!

Maria checked on my left breast and said that it already looked to be improving. YES!

Cellulitis, you are EVIL. I need to do more research on the topic, but I’ve gathered the following from WebMD:

“Cellulitis is a skin infection caused by bacteria. Normally, your skin helps protect you from infection. But if you have a cut, sore, or insect bite, bacteria can get into the skin and spread to deeper tissues. If it is not treated with antibiotics, the infection can spread to the blood or lymph nodes. This can be deadly.”

“At first, the infected area will be warm, red, swollen, and tender. As the infection spreads, you may have a fever, chills, and swollen glands.”

Well, that all sounds accurate to me: I had a major surgery involving a cut, the area is definitely red and swollen, and I really started to feel sick when I developed a fever.

Today I will have an ultrasound of my left breast to make sure there isn’t any fluid buildup. If there is, it will need to be drained. Fingers crossed there’s no fluid!

Well, that’s it for now. My nurse just started another IV drip. Check back for more updates on Cellulitis 2012!

 

Tissue expander fill #1 video

Hey all: Here is the promised video clip of my first tissue expander fill on Thursday. Remember that Maria only filled the right breast with saline. The brown stuff is iodine to sterilize my skin.

Tissue expander fill #1

Yesterday I had my first tissue expander fill at Dr. Festekjian’s office.

For those of you who still aren’t sure of how the breast reconstruction process following a mastectomy works, here’s a rundown: after Dr. Karam performed the mastectomy (removing all breast tissue) portion of my surgery on March 13th, Dr. Festekjian came in to insert saline tissue expanders underneath a layer of my pectoral muscles. These tissue expanders are essentially little baggies that create a pocket in the muscle. They have a needle port on top, and over time, additional saline is inserted so that the baggie and the pocket can grow. Once the tissue expander has been filled enough and the muscle pocket is large enough, the tissue expander is removed and a permanent silicone implant is inserted into the pocket.

During my initial surgery, Dr. Festekjian put about 300 ccs of saline into each tissue expander. This is a pretty decent amount of saline, so when I woke up from my surgery, I actually had breasts–yes, they were small, an A cup, but there was still something there on my chest.

Yesterday Dr. Festekjian took a look at both sides. I was concerned because my left breast seems to be bigger than the right. It had only started to look like that a few days after my drains were removed, so I was worried that I had a fluid buildup. Dr. Festekjian said that there was no fluid (yes! The evil fluid, defeated!) but that the tissue on the left was “still a little pissed off” (wise words) and that it was swelling. He decided to expand only the right side, in order to make them match a bit more appearance-wise but also to let the left side heal more.

Maria, one of the RN’s in Dr. Festekjian’s office who is pretty much awesome (she removed my drains last Monday), did the fill. Sidenote: I really like Maria. She is very understanding and has a lot of patience. I took some before and after pictures, a picture of the tools, and also a video of the fill happening. Since I have to run to work right now, I’m only going to post the pictures.

These are the tools that are used for the tissue expander fill: the giant plastic syringe is where the saline goes, and the little green needle is what is actually inserted into the skin. The two connect at the top of the needle, and the saline is slowly pushed through the syringe into the needle and then into the tissue expander.

Before going to talk to another patient, Dr. Festekjian used a magnetic device to “locate” the tissue expander port through my skin. He then marked it with blue ink–“X marks the spot”, redefined! He disinfected my skin with some sort of brown substance, I think it was iodine. He then made sure I was OK with Maria performing the fill. He said he could do it himself, but I was already scheduled to see Maria the following Thursday for my second fill and I totally trust her, so I was fine with it.

The fill itself did not hurt, but I felt the needle prick for sure. That was the worst part (as it always is). I thought I would be able to feel the saline going into my tissue expander and making my muscle tighten, but I didn’t feel it at all. Maria was very slow and steady with the saline syringe.

She inserted 75 ccs of saline, removed the needle and then put a bandage over my skin where the needle had been. I could see a difference in that my breast didn’t look as droopy. I took a before and after picture, but since I have my bra on for both it’s kind of hard to tell. The biggest difference you can see is the fact that my bra doesn’t look as saggy.

On the left: before the expansion. On the right: after the expansion. Note that only the right side (in this case, looking at me, the left side) was expanded.

I thought I would be in pain after the fill. A lot of women experience tightness (from the muscle stretching) and have to take pain meds. It’s been almost 24 hours and I haven’t felt any pain at all.

My next fill is going to be next Thursday. Fingers crossed that I get both sides expanded! Jeani, Dr. Festekjian’s wonderful assistant, booked me for my next five fill appointments, every Thursday starting yesterday. We’re not sure I’ll need that many, but it’s nice to have them planned out.

I’m happy now. This process is really happening! My reconstruction is starting!

 

Two weeks after the mastectomy…

and despite my positive attitude throughout my last few posts, I’m feeling pretty downtrodden right now.

On Sunday night my drains seemed to be going down and one of them even broke. I went to UCLA Medical Center to see my plastic surgeon, Dr. Festekjian, yesterday at 11 am in the hopes that he would remove my drains.

Incase you're wondering, here's a nice little pic of Dr. Festekjian. Click on it to read more about him!

Not only did he say he wouldn’t remove them yet, the way he fixed my broken drain makes me feel like even more of a mutant! It’s nothing major but the reason it broke in the first place is because the drain tube wasn’t pliable enough at the bottom, causing the top of the bulb to snap off. He had to add extra lengths of a more pliable tube, so now the drain tube is even longer and more awkward and harder to hide. MEH.

He did check on my “foobs” (fake boobs) to see how they were doing. The tissue expanders looked good, but he said my left nipple looks questionable. He is concerned with the amount of blood flow going to it and wants me to keep checking on its progress. I’m supposed to take pictures of it daily to see if it changes for the better or worse.

I’m pretty upset about this. I opted to have a nipple-sparing mastectomy because I didn’t have cancer and didn’t have to worry about getting rid of “everything.” I thought, hey, this won’t be so bad–I’ll still have my nipples, everything will still look like ME except it will have new stuffing. Now I’m running the risk of something actually happening to my nipple. What if it dies? What if he has to remove it and I have to get a fake nipple tattooed on? Nothing on my left side will be me anymore at that point.

I’ve never given much thought to nipples until now. I’m sorry if this seems too graphic or vulgar for anyone, but it’s the reality of the entire situation. Women who have these kind of surgeries–preventative or not–have to worry about this sort of thing. I’m just very angry right now that my “brave” and “smart” decision to have a prophylactic mastectomy is now giving me this anxiety over my aesthetics and what is rightfully “mine.”

The other day I stumbled upon a blog called Wearing my BRCA genes. It’s written by a young woman who, like me, found out very young that she had a BRCA mutation. Unfortunately she was also diagnosed with breast cancer. =( Her blog is really great. One of my favorite posts contains a poem she wrote called “Healthy Skin.” When I first read it, I just thought it was beautiful. Now I think it applies to me and I want to share it with you all. Maybe you can understand how I’m feeling about my stupid nipple.

“Healthy Skin”

By Cara, from Wearing my BRCA genes

The color of healthy
skin is pink. Peach if
you’re a Caucasian coloring
with crayons.
In shadows black skin
emerges, but the best
we can hope for is pink
underneath. Blood,
oozing, is a good sign,
scary as it is.

Cream is slathered
on the skin, like icing
on a cake, the surgeon said.
Covering up the black
and ushering in the pink,
the blood, the blisters
that pop and reveal soft
pink, underneath.

I hope for pink, because
it is the color of healthy
skin.

“In shadows black skin emerges.” Go away, black skin! Leave my nipple alone!

I think I need to start writing my own poetry about this. I like poetry.

Ugh, my Jackson Pratt drain broke!

I was really, really hoping I would get my drains out by Friday, since I had plans to see a lot of people on Saturday. Well, no such luck for me: they were still producing about 50 ccs of fluid each on Friday. The assistant at my Dr. Festekjian’s office, Jeani, did tell me to keep in contact with her via email over the weekend to see if they would be ready to pull on Monday.

Well I walked in the door at my parents’ house today around 5 pm, took my shoes off, dropped my bag, and looked down to see that my drain tube was dangling by my side. I’ve gotten relatively used to this unpleasant site; my drain tubes have come detached at a few random times. Only this was different: the drain bulb broke! The area where the bulb attaches to the tube just broke off completely. So basically…the drain won’t work.

I got in contact with the plastic surgery resident on-call at UCLA Medical Center. I explained to him what happened, but also made sure to note that my drains were very low (30-35 ccs, yay!) and that I had already planned on going to see Dr. Festekjian on Monday morning to get the drains removed. He told me to wrap the drain tube in a zip lock bag and to tape the bag and tube together.

Pop quiz: which drain is messed up?! It's really hard to tell, I know.

Once I taped everything together, I emailed Jeani at Dr. Festekjian’s office. Fingers crossed I get the drains pulled tomorrow!!!!

In other news, I still feel great! I’ve stopped taking pain meds completely; the only time I feel any kind of pain is when I twist in an awkward way or bend down really far. I’ve been going on long walks (2-3 miles) every day, which is great–I love getting out of the house. I’ve also been driving for the past couple of days–I started on Thursday the 22nd.

On Saturday my roommate Danielle and I had a dinner party at our house near USC. I have been so bored and lonely at home (no offense, Mom and Dad) so I was really looking forward to the dinner. We decided to do Mexican food. Bryce (my boyfriend) made enchiladas, and Danielle bought taco meat, tortillas and a bunch of the necessary sides (sour cream, salsa, etc). We set up stations and made margaritas (yes, I’m off of my antibiotics!)

This dress, from H&M, is very similar to the one I wore last night--you couldn't even see my drains!

It was sooooo delicious and so much fun to see my friends. We had about 12 guests over. Danielle let me borrow a simple black dress with a drop waist. I attached my drains to a belt, and you couldn’t even notice them underneath. A few of my friends said that they actually forgot I had had any surgery because I looked so good! That definitely was nice to hear.

The only thing I missed out on last night was the pinata. In honor of Danielle’s 22nd birthday, I bought a Justin Bieber pinata and stuffed it with candy and random goodies (temporary tattoos, cheap sunglasses, Mardi Gras beads). I wasn’t going to attempt to whack that thing. I dislike Justin Bieber, but I don’t hate him enough to screw up my upper body after my mastectomy!!!

Molly takes a swing at the Justin Bieber pinata as Bryce holds it. Yes, Bryce held the pinata. He is a trooper.

Around 10 pm, after most of our guests had gone home, Bryce and a few other friends and I went to another friend’s St. Patrick’s Day party (yes, one week after the fact.) We were so cultured last night: Mexican food and Irish drinks (though I don’t particularly like Guiness.) Again, it was really nice hanging out with people, and no one could even tell I was recovering from surgery. We stayed until about 1 am and then headed home for the night.

Danielle poses with the Justin Bieber pinata after its defeat. Happy birthday, D!

Honestly, if you had told me before my mastectomy that I would be hosting dinners and going out to parties less than two weeks after the surgery, I would NOT have believed you. I’m just so amazed by how great I feel. I’m going to go back to work tomorrow, too.

If any young women are reading this who are considering doing a preventative surgery, I think it’s important to remember that younger bodies heal faster. I watched my mom recover from her mastectomy in November, and I talked to and read responses from other women who had gone through a mastectomy. In all of their cases, it was a long recovery. They weren’t up and moving a lot for at least two weeks; they weren’t going back to work for at least a month.

I really did prepare myself to be out of commission (in bed, sleeping, not driving, not working even from home) for at least two weeks, with the possibility of a third. Totally NOT the case for me. Yes, everyone is different, and everyone going through a mastectomy needs to take the proper measures to allow their body to recover. You do need to take work off. You do need to stay with someone who can take care of you. You do need to lay low for a while. But if you’re young, you probably won’t need to do that for too long. Take everything you read about mastectomies with a grain of salt, because most accounts are not coming from woman in their 20s. Consider how your experience as a young, healthy woman will be a bit different.

Well that’s all for now, folks. Fingers crossed the drains are pulled tomorrow!

 

One week out from my mastectomy: my notes

So around this time last week (March 13th) I was waking up from my prophylactic double mastectomy in the recovery room at Ronald Reagan Hospital at UCLA. Later posts will describe that day and the next few days, but for now I thought I’d take the time to reflect on how I’m feeling one week after the procedure.

My pain level is doable.

I really, really thought I would be in excruciating, I-can-barely-take-it-anymore-just-kill-me-now kind of pain. Reading other people’s accounts online and having witnessed my mom’s own recovery from her mastectomy made me think that pain would be a big part of my life for the next month or so. In reality, this isn’t the case. Yes, it hurts. But it’s more of an uncomfortable feeling. Right now I am sitting in bed with a wedge pillow behind me, laptop on my lap (as it should be!) and I don’t feel any pain.

In the morning I usually feel the most pain when waking up, but I just take some pain meds (in the beginning it was oxycodone; now I’ve weaned myself onto Tylenol). The pain I have is best described as a heavy tightness. Sometimes moving in a certain direction triggers this “tightness” because it seems to put a strain on my chest muscles. I feel pain more, interestingly, when I have tighter clothes on; sometimes I can’t deal with the tightness of the mastectomy bra and have to switch into something loose.

The drains are much more than I bargained for.

If you read my post from earlier this morning, you’ll know that I am not on good terms with my drains. They’ve done nothing particularly rude to me: I have no infections and they don’t hurt. But they are just annoying and tedious to deal with, factors I did not bank on before I went in for the surgery.

I never considered how limiting they would be for my wardrobe. Yes, I knew I would have to stock up on button-up or zip-up tops, but it doesn’t stop there. I need to consider my drains, these two oafish looking things hanging from my body. Tonight, for example, my parents, boyfriend and I are going to a nice restaurant, a possible venue for my grad party. No one wants to see my drains while they eat. And I also want to look nice (for once). Boy, it’s going to be fun to dress for that!

I’m not stuck in bed.

I was pretty sure this would be the case, but I didn’t want to take any chances so I stocked up on movies and reading material in case I was too weak to get out of bed. While I was mostly in my bed for the two days at the hospital, by the time I got home, my pain level had subsided enough that I could move myself out of bed without much help. The key was to almost rock my body upwards, using my abs. You gain enough momentum and suddenly you’re standing!

I putz around the house often and I’m self-sufficient. Sure, if I am in bed and I’ve dropped something on the ground and a parent happens to walk by, I’m not above asking him/her to pick the item up. But I’ve done pretty much everything on my own. Today, for example, I watched my hair by myself.

That being said, however, I am getting really restless.

While I’m by no means an athletic person, I am normally very active. I love to walk for exercise, and lately I’ve been going to spin classes at a few local studios. Not exercising–or being active at all–is driving me crazy. Yesterday I actually went on a 2-mile walk with my mom. I am going to go on another one after I finish up this post. My drain output hasn’t changed because I’ve been more active, and I’m not using my upper body, so what harm is there in it?

I’m surprisingly OK with not showering.

Normally I shower once a day. In the last few months, I’ve taken to trying to wash my hair less, so sometimes I don’t shower every day. In the last week, I haven’t showered once. And I’m not feeling too awful about it.

The Monday night before my surgery I took a really long shower. My mom braided my hair after. Definitely a wise choice, as it kept my hair cleaner and made it easier to deal with when I was in the hospital.

On Friday afternoon I went to a salon and had my hair washed and put into two french braids.

This morning I finally decided I’d wash my hair on my own. Aside from the fact that I looked like the MGM lion after I brushed it out before washing, it was relatively clean.

My lion mane after brushing out the french braids.

To keep my body fresh and clean, I’ve been using disposable pre-soaped wash clothes. Super easy and mess-free.

I’ve accepted how I look right now.

I really thought I’d be depressed by my appearance at this time. But I’m not…which is great. I think I’m still a bit surprised by the fact that I’m not completely flat. During surgery, my plastic surgeon filled my tissue expanders up to 300 ccs each so I’m about a large A-cup right now. That’s still a big difference from the C I was before, but I don’t mind it terribly. It’s kind of fun, the idea that I can “try out” different body shapes. Right now I am truly a bottom curvy, pear-shaped girl.

Perhaps part of my anxiety about my appearance that I experienced before the surgery was associated with the waiting. But once it was done…well, it was done! Things can only get–and more importantly, can only look–better from here.

 

What would you do if you knew you were going to get cancer?

What would you do if you knew you were going to get cancer? You don’t have it, yet—but it’s coming for you! Could be in twenty years; could be in ten. Could be in fifty years; could be in six months.

That was my situation. After my mom was diagnosed with breast cancer for the second time in September of 2011, she was tested for genetic mutations of the BRCA genes, a class of tumor suppressors that work with reproductive tissue. She tested positive for the BRCA2 gene, which is linked to an increased risk of breast cancer. As all good students who were awake for at least one Biology lecture should know, genes are passed down through parent to child. There was a 50% chance I had inherited the same BRCA2 gene mutation.

Even before I made the decision to be tested for the mutation, I knew there was a higher likelihood that I would be diagnosed with breast cancer at some time in my life. My mother was diagnosed for the first time at a relatively young age, which made me more susceptible. Since my outlook was already somewhat pessimistic, being tested for the BRCA2 mutation wouldn’t change much.

I waited almost two weeks for the results of the blood test and finally heard back on October 25th, 2011. Yes, the results were positive: I had inherited the same mutation as my mom. I was not surprised by the news but that doesn’t mean I was not upset, either. The numbers are pretty daunting:

  • The BRCA2 mutation means I have a 56-87% chance of developing breast cancer by age 70
  • It also means I have a 27-44% chance of developing ovarian cancer by age 70
  • I have a slightly increased chance of developing other cancers, such as pancreatic and stomach
  • I have a 50% chance of passing this genetic mutation onto my children

So pretty much, I realized I was going to get breast cancer…that’s how the numbers played out, and my mom’s history of breast cancer confirmed those numbers. Yep, I was pissed. For a few days there I felt like nothing in life was “important” anymore, that school and work didn’t matter because I had much bigger issues to deal with and I couldn’t possibly be bothered by the mundane, menial tasks of everyday life!

Right, clearly that’s a stupid attitude. After moping around a bit I realized I needed to get over myself and stop acting like a little drama queen. I needed to take action!

My options were as follows:

1. Do nothing now. Start routine mammograms around age 40. Hope that there aren’t any cancerous cells lurking in my body.

2. Begin yearly MRIs and mammograms at age 25, which would (most likely) catch any cancer early, making it easier to treat.

3. Opt for a prophylactic mastectomy to remove all of my breast tissue, dramatically reducing my chance of getting breast cancer

Well, you guys all know what I picked! A prophylactic mastectomy. It seems so drastic, I know, but it’s the only active route. Why would I wait for cancer to strike me when I could kick its ass right now? Although the yearly MRI and mammogram option is a smart one, I believe that it’s too passive because I would just be waiting for a cancerous lump to appear. When that lump did appear, I would end having a double mastectomy anyway, in addition to chemotherapy and radiation.

By opting for the prophylactic mastectomy, I’ve essentially lowered my risk of breast cancer to almost 0%. And there are more bonuses: I won’t have to go through chemo or radiation; I won’t have to put my career on hold; I won’t have to explain to my kids why I’m bald; I can pick the best time and place for me to have surgery; I’m still covered by my parents’ insurance; and most importantly, my mommy will be there to take care of me after!

My surgery was on March 13th, at Ronald Reagan Hospital at the UCLA Medical Center. I know, I know, I’m a USC traitor—but these doctors are incredible. I am so confident in them. Plus, my plastic surgeon was also my mom’s plastic surgeon when she had her mastectomy back in November, and he did a great job with her reconstruction.

Oh yeah, that’s something I forgot to mention: reconstruction! I’m not going to be flat-chested, woohoo! I’m going to be getting silicone implants. But first, in order to prep my body for the implants and to make sure they are spaced correctly, I have tissue expanders. Tissue expanders are pockets of saline that are placed underneath the chest muscle. Over time they are gradually filled up with more saline. Once they are at my “ideal” breast size, the tissue expanders will be switched out for the silicone implants.

I’m using this blog as a way to shed light on this issue. It’s a pretty niche topic; not many resources exist for women like me. Throughout my posts I’ll be documenting my progress after the surgery. I’ll also backtrack and give background on my family history of breast cancer and how its presence in my life led up to my ultimate choice to have a prophylactic mastectomy.

Thanks for reading!