Sometimes all I need is a little TLC,

and I want to recognize the people who give that to me.

Let me preface this by saying that I have been a mess these past few days. On Thursday I finally felt brave enough to show my face in the classroom. Things went well there (nothing happened with my drains) so I decided to attend a close friend’s birthday dinner. Well, my drains started acting up. They popped out at least five times. Embarrassing, but since I was sitting down it wasn’t that noticable.

The next morning I couldn’t go anywhere because the drain wouldn’t stop popping out. Every time I moved, it moved, too. POP. Fluid. Gross. I called Maria, one of the nurses working in Dr. Festekjian’s office. I basically just sobbed to her on the phone about how my drains were embarrassing me and making me miserable. I told her that they NEED to come out. She said she would consult with Dr. Festekjian and let me know.

Well, of course the answer was no. And I understand it, I really do. If the drains are taken out too early, fluid can build up into a hematoma (or something else but I can’t remember the name), and removing that fluid with a needle could cause infection. An infection, in turn, would jeopardize my tissue expanders and might mean I would have to start the entire process over again. That sounds awful. No way I want that.

She told me that I should stop doing so much upper body movement. Well, okay, really? I’m not lifting weights. I haven’t gone kayaking. I haven’t even tried spinning (even though I reallllly want to get back into it asap!) What was I supposed to do? Dr. Festekjian encouraged me to exercise, so I’ve been walking! With my legs. Not on my hands.

So Maria said I should consider just “hunkering down” for the weekend. Ugh. GREAT. That’s just what I want to do…stay inside and do nothing. But you know what, why not try it? If hanging out at home in bed being a lazy bum for an entire weekend means that my drains might come out sooner, I might as well try it.

It’s still making me pretty emotional, however. I hate being still and I hate being bored. Just a few minutes ago I was crying because my drain site hurt so much. It’s kind of swollen and the drain tube jabs at me every time I move. My dear boyfriend Bryce applied Neosporin onto my drain site, covered it with gauze and taped it up. After he did that I excused myself to the bathroom (where I’m typing this now!) because I needed to write this for him. What he did for me, as gross as it was, made me realize that there are people in my life who have made it all so much easier. I want to recognize the people who have helped me throughout this entire journey, and Bryce deserves to be recognized first.

Here we are last March, singing karaoke…he was so scared to get up on stage, but he did it for me and he did GREAT!

My boyfriend Bryce has been incredible throughout our entire relationship. When we first started dating last January, my dad was going through some serious heart problems. He was in the hospital at UCSF for quite a long time, and we had a few serious scares. Bryce supported me through that, letting me talk if I wanted to talk, cry if I wanted to cry, and yell if I wanted to yell.

When my mom was diagnosed with breast cancer again in September, I didn’t want to talk about it with Bryce…at all. But he wouldn’t stand for that because he doesn’t like to be isolated–he wants to help me. So he made me talk to him about it, and slowly but surely, I did.

When I found out about my BRCA test results, he was there beside me. He didn’t know what to say–no one knows what to say when someone gets that kind of news–but he let me know he was there for me. Later that week, he went with me to a presentation by Lindsay Avner, the founder of Bright Pink. He was the only man there, but he did great, and he learned a lot about what the BRCA gene meant and what my options were.

After we went to the presentation by Lindsay Avner, we went out in Hollywood for Halloween! Can you guess who we are?

In the weeks leading up to my mastectomy, I was very moody, and Bryce was so tolerant of it. Really, I was a bitch to him a lot of the time, but he never said anything to make me upset. After my surgery on March 13th he was waiting for me in the recovery room. He’d been waiting at the hospital since about 10 am, and when I woke up it was 2 pm. He hadn’t eaten lunch yet. Bryce, mind you, is 6’6 and eats everything in sight: the fact that he had skipped lunch just so I wouldn’t be alone when I woke up is a HUGE deal. Seriously.

Since then, he’s continued to be amazing. He drove out to Redondo Beach almost every night (which is an hour drive) to see me. He brought me movies so I wouldn’t be bored. When the flowers he brought me at the hospital died, he bought me another beautiful bouquet to replace them.

He lets me cry to him. He’s not afraid of my scars. He helped me take pictures of my questionable nipple to send to my plastic surgeon to review. Last night he changed the sheets on my bed so I wouldn’t have to sleep on dirty shirts.

When I tell him I just want to be alone and I don’t want to see anyone, he doesn’t listen. He’s persistent and he annoys me and continues to call me and then he eventually just shows up at my house…with more movies and snacks sometimes, too. And then he’s there and although I’m still sad and my drains still hurt and I look really ugly because I’m wearing a poncho and boxers and no makeup, I feel better.

April 10th is his 23rd birthday. Sometimes, when he’s playing dumb games on his phone or when he’s freaking out about a basketball game, I think he’s an eleven year old boy. But then there are times like these, when he’s just changed the icky dressing on my wound, that I realize he has a very mature side. He is a great caregiver and I’m so thankful to have him in my life. I don’t want to imagine how I’d feel now if I didn’t have him sitting on the futon (which he converted into a fluffy bed of awesomeness so we can watch movies on the big screen in the living room), about to put on Ferris Bueller’s Day Off.

I’m so lucky to have him!

 

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The Jackson Pratt drain saga continues

The drains are STILL here. STILL. It’s been sixteen days and they’re still here, attached to my body like freaking tentacles or something.

I feel like I’m subhuman. At first I joked about that–about being some kind of mutant–but that was okay, then, because I wasn’t going outside of the house that often. It didn’t bother me when people passed me as I went on my daily walk.

This is how I feel, except my hair doesn’t look that good and I’m not smiling.

But now I feel fine physically and I can pretty much do anything, so of course I’m out and about at the mall, restaurants, the library, the grocery store. And I am SO self-conscious about these drains. The problem is two-fold:

  • They look weird–I’ll be the first to admit it. Especially now that the one on the right is extra long, they are hard to conceal. Every time I walk by a little kid I imagine that kid going “ohmigawd Mommy what is WRONG with that lady?”
  • I can’t wear what I want. I’m pretty much limited to shirts that are either short/cropped or have buttons or a zipper. I can also wear sweatshirts and baggy shirts, but those just make me feel even worse. Not only am I a mutant with tubes, my only option is to look fat and frumpy with the tubes.

And now, on top of all these vain problems I’m having, my drain on the left keeps popping out of place! I was avoiding going to work and school because of these damn drains. Last week I was supposed to take a midterm on Thursday, but my gracious professor said I could reschedule it.

Well there’s NO reason for me not to go to class to take it today…I’ve studied for the midterm, I feel good, I’m ready to participate. But my stupid drain is popping out. That’s going to look really awesome to all of my peers when we’re in class and my drain pops out and gross bloody fluid drips all over the floor. Yes, I’m going to be super cool after that. “Awkward Drain Girl.” That’s what they’ll call me.

My 22nd birthday is in exactly one week and all I want is to get these drains out. Last week I was pushing for Monday–haha, funny joke! On Monday, when Dr. Festekjian said to give it a few more days, I was pushing for Thursday. NOPE. Now I’m not even going to think about getting them out this weekend because that would surely make it not happen.

On Monday they were outputting about 35 ccs per day–SO CLOSE. Now they’re playing a cruel, cruel trick on me by creeping up there again, to about 40-45 ccs per day. WHAT THE HELL. That’s all I can say. I am so angry about it.

Drains, what’s your problem? I just had my entire chest removed. My breasts are gone. I’m 21 years old and I look like a fat nine-year-old boy. My nipple is “iffy” and I have to worry about it dying. All I ask is that I can cover all of this up with a cute shirt and cardigan or a nice dress and pretend for a few hours at a time that I’m normal. Why, drains, is that so freakin’ hard for you to accept?

 

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!

 

OMG I took a shower!

Most people probably don’t understand how freaking MONUMENTAL it is that I, Rachel Joy Horn, at approximately 11:40 am on Wednesday, March 21st, took a SHOWER. (This day is also awesome because it’s my best friend Danielle’s 22nd birthday…happy birthday Danielle! Now back to the shower.)

After I got my hair washed last Friday at a salon, I posted a Facebook status about how happy I was. My cousin Robbie responded with: “Next great feeling is a shower!” Boy was she right!

This is me after the shower! Note the drains attached to the shoelace around the neck.

There are two camps on showering with drains in: shower, and don’t shower. I don’t think one particular group is right; it is really a decision that needs to be made with the individual in mind. I’ve done a lot of Internet research on the topic, but I wanted to get specific approval from my medical team before I did it. I emailed my plastic surgeon’s office about it, and received approval along with some tips for showering safely:

  • Make sure the drain sites are covered with plastic completely.
  • Safety pin the drains to a shoelace and wear the shoelace around your neck so you can use your hands freely.
  • Keep the water on relatively low pressure.

With that approval, I was off! My drain sites are already protected with a plastic adhesive dressing, but Mom helped me to wrap that part of my torso in plastic wrap. This was a fail. When I got into the shower, the plastic wrap filled with water in all the loose crevices, essentially weighing everything down. I ended up taking the plastic wrap off halfway through because I was afraid water would pool up around my drain sites.

I had no trouble lifting my arms to wash my hair, which was a relief.

After the shower we decided it would be the safest idea to change the dressings around my drain sites. They seemed fine–there was no water around them–but we wanted to be sure anyway.

I feel soooooooo much better now that I’ve finally showered. Seriously awesome.

I do have to stress though that I’m glad I talked to my plastic surgeon’s office. Any potential infections in drain sites can be lethal. Getting the approval and advice for how to shower safely took away anxiety about it. If you’re in doubt about whether you can or should shower after your mastectomy, ask your doctor!

 

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.

 

Dear Jackson-Pratt drains,

I hate you.

It’s been one week exactly since my surgery, and I can say with complete confidence right now that I hate these stupid drains.

But hey–if that’s the biggest complaint I have, maybe things aren’t so bad.

What bugs about these drains is that they’re just so…limiting. For those who aren’t familiar with the nuanced terms of mastectomy, Jackson-Pratt drains are used to remove excess fluid buildup from the surgical site. On each side of my chest, about halfway in between my armpits and my hips, I have a plastic tube sewn into me. The tube attaches at the bottom to a plastic bulb that uses suction to “swallow” liquid. This is the drain.

JP drain diagram from drugs.com
This is not exactly where mine are located, but it’s a decent illustration.

Every twelve hours, I empty each drain and measure how much fluid is expelled. Once I am below 30 ccs of fluid per 24 hour period, I will be able to have the drains removed. Right now I’m at about 80 ccs per 24 hour period…so I’ve got a while to go . =(

I thought that emptying the drains would be a tedious, disgusting task. The fluid is pretty gnarly: it’s a translucent red/orange and I can see when blood clots pass through. But no, emptying them is really easy and I don’t get grossed out.

They are just annoying to live with! You can’t hide them. I have two mastectomy bras, soft bras that use hook-and-eyes to snap closed in front. Each bra has areas for attachable drain pockets, little white pockets with velcro where I put the drains. At home I usually walk around wearing just the mastectomy bra and drain pockets, or I wear a zip-up or button-up jacket with pockets and stick the drains in the pockets.

It’s going out that’s difficult. Yesterday I decided I wanted to go for a walk–but what do I wear? Do I wear a jacket and just deal with the fact that fellow walkers and bikers will think I’m some kind of mutant with bloody tubes running out of my body? Do I stuff the mastectomy bra and drains into a zip-up jacket and risk looking like a pregnant teenager? Do I wear an oversized flannel shirt and look like a hobo who hasn’t showered in a week? (Oh wait…that last part about showering is true.)

Yesterday, before my walk. I opted for the mutant alien look. P.S. look at how flat-chested I am LOL boobs.

That’s another downside. I can’t shower with these things in. Water is not supposed to get near the drain site to avoid infection. MEH. I’ve had my hair washed and I’ve been using nifty little pre-soaped disposable wash clothes to keep clean. (FYI, the Horn residence is pretty much its own pharmacy. Between me, my mom, my dad, and my diabetic dog, we’ve got every drug, gauze pad and bandage, and medical instrument you could ever need.)

I’m also scared I am going to pull them out in my sleep. For some reason, the drain on the right is different than the one on the left: the tube is not attached to the bulb with anything other than pressure from the suctioning. On the left, there is a nifty little device that keeps the two attached. Already once the tube on the right has become disconnected from its bulb. Nothing big happened–I realized it immediately and put it back together. But I’m scared that it’ll come out in my sleep and leak all over my nice clean sheets.

Leaving you with that nice image and my fears, I am going to attempt to go back to sleep. In a few hours I’ll post a really informative, well-rounded “One week out” post and we can all forget about my hatred for drains.

 

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!

November 2011: Mom’s mastectomy

Following Mom’s second breast cancer diagnosis in September 2011, she was tested for a BRCA mutation. She tested positive, explaining why she had been targeted by breast cancer twice in only twelve years.

Twelve years ago, in 1999, she was given the choice between a mastectomy and a lumpectomy. Twelve years ago, she didn’t know about the BRCA genes; not many people did, since the BRCA genes had only been discovered about five years earlier. Why have a mastectomy when the cancer tumor could be removed, and any remaining cells could be attacked with chemotherapy and radiation? A mastectomy meant losing her breast and dealing with even more surgery; a lumpectomy seemed like a much easier solution. So she had a lumpectomy.

Twelve years later, it was obvious that a mastectomy would be the smart choice for dealing with this second case of breast cancer. Her BRCA mutation meant that any breast tissue could turn lethal; having a lumpectomy might only be a temporary stop to breast cancer.

On November 9, 2011, we drove over to UCLA Medical Center at the crack of dawn for the mastectomy. Mom had showered and braided her hair the night before and was in all around good spirits. The three of us (Mom, Dad, and me) waited in a small pre-op room. Throughout the next hour, various people popped in to say good morning and explain any last minute surgery details: We saw her breast surgeon, Dr. Helena Chang; her (and later my) plastic surgeon, Dr. Jaco Festekjian; and many members of the anesthesiology team.

Here we are before Mom’s mastectomy…notice her braids! Smart choice.

Mom’s breast reconstruction, done by Dr. Festekjian, was a combination of a DIEP Flap procedure and a tissue expander insertion. Fat tissue from her stomach was used to create a left breast (the DIEP Flap procedure). This was necessary because her left breast, which had been radiated twelve years before, could not support an implant. Some women are able to use the DIEP Flap procedure to recreate both breasts, but Mom was too skinny for that! A tissue expander (like mine!) was inserted under the muscle of her right breast.

Dad and I sat in the hospital waiting room for hours during her surgery. A television screen monitored the progress of each patient, tracking if they were still in surgery or if they had been moved to a recovery room. After more than eight hours, Mom was moved from a recovery room to a hospital room. We were finally allowed to see her.

As expected, she was very drugged up and was also having problems with nausea. But she’s a trooper, and the next few days were easier. I tried to visit her each day after work or school, bringing her food or small gifts. One present was a 20 Questions electronic game. We had a lot of fun with that one, and her nurse was delighted because she had recently purchased the same toy for her grandson but had no idea how to use it! It’s a good thing I was there to teach her. =P

The 20 Questions toy!

After Mom’s mastectomy, her breast tissue was sent to a lab to be biopsied. Since she already had breast cancer, they studied the tumor to determine the next course of action. We were all delighted when Dr. Chang called to say that the tumor was very small and contained, meaning that chemotherapy would be optional! Yahoooooo!

Since it was Mom’s choice and she had already gone through the trauma of chemotherapy and radiation once before, she opted to forgo the optional extra treatments.

Mom, relaxing at home in bed in the days following the mastectomy. Note the Stuffed Usurper, a stuffed animal version of our dog Madeline, who was on vacation in San Diego with her auntie and uncle.

Over the next few months, Mom returned to Dr. Festekjian to have saline inserted into her tissue expander. She also started to see Dr. Amer Karam (my breast surgeon…isn’t he cute?!) about having a prophylactic oopherectomy. Dr. Karam is a gynecologic oncologist and breast surgeon–a true Renaissance man!

A BRCA mutation is not just about breast cancer; it also means an increased risk of ovarian cancer. Since Mom went through menopause already, removing her ovaries (an oopherectomy) was a practical decision.

The timing worked out that Mom’s oopherectomy could be at the same time as her implant exchange surgery, on February 27, 2012. Dr. Festekjian swapped out the tissue expander on her right side for a permanent silicone breast implant. He also took care of a few aesthetic issues associated with the DIEP scar. Dr. Karam performed the oopherectomy.

Since both surgeries were more minor than the mastectomy, Mom was able to come home later that afternoon…and I was able to go to Vegas with my girlfriends the following weekend without worrying about her, whoohoo!

Her recovery has been great since both surgeries. When she regained strength in her upper body, Mom joined the LA Pink Dragons, a dragon boat team of breast cancer survivors. She rows with them twice a week in Long Beach, and she loves it!

Physically, she looks HOT. The DIEP Flap procedure was in essence a tummy tuck, and her reconstructed breasts are slightly bigger than before, making her a large B cup/small C cup. If you’re going to get cancer, you might as well reap the benefits of fighting it off…get a rockin’ bod!

 

October 2011: It’s in the genes

A few days after finding out about my mom’s breast cancer diagnosis, I calmed down and stopped being so much of a basket case (meaning I returned to work, started doing my homework assignments again, and could listen to the song “Walk” without bawling.)

On September 30th my mom had sent an email to our “friends and family” mailing list, the people who routinely receive all of the news, good and bad (some of you might be reading this blog entry by way of that mailing list!). It detailed what was going on, what we knew about the cancer, what we didn’t know, and what the probable plan of action would be. This email was the first mention I’d ever seen of the BRCA genes.

On October 7th, Mom met with Erin O’Leary (scroll down that link to read Erin’s brief bio), a genetic counselor at UCLA Medical Center. Erin gave her more information about the BRCA genes and mutations and then did a blood test. The results of the blood test came back to us on October 13th, with a positive result for the BRCA2 genetic mutation.

The big bad scary place: 200 Medical Center Plaza at UCLA.

Mom wasted no time in telling me. Many parents who carry a BRCA mutation are very anxious and worried about telling their children; not my mom. She went straight from UCLA Medical Center (where she got the results) to my office in Santa Monica, took me out to lunch, and told me about the gene mutation. While she went to the restroom, I called Erin O’Leary and made an appointment to see her the next day.

That evening at home I started doing a lot of research on the topic. There were many questions: What were the BRCA genes? What were mutations of these genes? How many women had a mutation? Who was more likely to have a mutation? Could men have them? And most importantly, what were my risks? (The answers to these questions can be found here.)

My appointment with Erin the next day wasn’t necessarily about being tested for the BRCA genes; we just wanted to discuss what it meant for me that I had possibly inherited the same BRCA2 mutation as my mom. I, however, knew I would go forward with the blood test that afternoon.

Knowledge is power. Why wouldn’t I want to know? Growing up as a child of a relatively young breast cancer patient, I always knew that my chances of being diagnosed with breast cancer would be higher. Finding out that I was BRCA2 positive wouldn’t really change how I already felt.

Erin is great. Seriously. She has been such a helpful resource for me along this journey and was since the minute I met her. It was the three of us (Mom came with me) at the appointment. Erin gave me some background about the BRCA genes as well as some materials that had the specific numbers associated with BRCA mutations. We then talked about the typical options for women who are BRCA positive. The way I saw it, there were three options, but the first one was doing nothing–which isn’t actually a good option for anyone. So the only two viable ones were:

  1. Enroll in a program offered by UCLA Medical Center for high-risk women. Start yearly MRIs and mammograms at the age of 25. Start monthly breast self-exams. Start screening for ovarian cancer between ages 25-35. Consider chemoprevention, such as taking a drug called tamoxifen. (For more information about what the Revlon/UCLA Breast Center High Risk Program entails, download the brochure here.)
  2. Elect to have a prophylactic double mastectomy and reconstruction at any age. Elect to have the ovaries removed (oopherectomy) after I’m done having children.

The first choice, to me, seemed too passive. I’d already seen the numbers, and Erin had explained them to me even more; doing intense surveillance for breast cancer wouldn’t stop breast cancer from happening, it would just catch it early.

Before I got my head too involved in the different options, I figured it would be best to actually learn whether or not I had a BRCA gene mutation. Erin, who already knew that I hated needles, offered me two choices: the blood test or the saliva test. I told her I’d suck it up for the blood test.

I really am a baby when it comes to blood tests. And honestly, each time I get one, as soon as it happens I’m like “Oh…that wasn’t that bad…” And it wasn’t!

What was bad was the waiting. UGH! I hate waiting! My blood test was on a Friday afternoon, so it wasn’t sent to the lab until the following Monday. I hoped to hear from Erin by the following Friday, but the day went by without a phone call or email. The Monday after that I still had not heard. So on Tuesday morning (October 25th) I decided to call Erin myself.

I could tell immediately by the tone in her voice that I wasn’t going to be pleased with the results: I had inherited the BRCA2 mutation from my mom. Damn…you know…damn. Okay, I had prepared myself for these results because I already thought I would hear bad news…but still, there was always that little shred of hope that the gene mutation had skipped me.

My BRCA test results, from Myriad Genetics & Laboratories.

Well, at least now I knew for sure. And while the results were not desirable, the timing of their delivery couldn’t have been better: Erin mentioned to me that Lindsay Avner, the founder of an organization for high-risk young women called Bright Pink, would be speaking the following Saturday at a nearby hospital. She emailed the event information to me.

Lindsay Avner, founder of Bright Pink.

I was definitely going to go to the event. There was a lot for me to think about, and I hoped that seeing Lindsay Avner and hearing about her personal story would help me figure out my own.