Tag Archives: prophylactic mastectomy

Shopping for the Post-Mastectomy Patient

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

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

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

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

Shopping after a mastectomy sucks!!!!

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

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

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

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

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

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

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

What do you think? Any suggestions?

 

Tissue expander fill #1 video

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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

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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!

 

Well, it’s been over four weeks since my mastectomy!

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I apologize for not writing for some time. Life has been busy! But busy in an oddly normal way. Aside from the slight difference in my appearance, most everything seems to have returned to the way things were before my surgery. I went back to work last Tuesday, I’ve been going to class, and I’ve been out and about with my friends and family. The only thing is that I’m feeling fatigued and I want to know WHY! (More mention of that towards the end of the post.)

On Wednesday the 4th my sister Wendy visited us from Boston with my niece and nephew (ages 13 and 15, respectively). It was awesome seeing them. I have six nieces and nephews (and I love ’em all!) but have always regarded Matthew and Nicole as my younger siblings. I lived in Boston when they were born and I grew up with them.

Thursday the 5th was my 22nd birthday. I had work and class, so instead of rushing out to Redondo Beach after class at 8 pm to try to get dinner with my family, I decided to go out in nearby downtown Los Angeles with my friends. It was really great: not only did I enjoy everyone’s company, I also felt so normal! Danielle let me borrow a really cute crop top and I paired it with a black high-waisted skirt. No one could tell that I had recently had surgery.

Here’s a pic of B Boy and me on my birthday. We started the night at the rooftop bar at the Standard. Please note Marissa photobombing in the background.

During that awful weekend before my drains were removed I was concerned that my drain site was infected. Maria from Dr. Festekjian’s office said she might put me on antibiotics, but I cautioned her that my birthday was later that week and that I would prefer not to be on medication. Luckily I didn’t have an infection, so I was OK to drink on my birthday! My friends bought me some pretty delicious drinks (birthday cake shots and mojitos, anyone?) All in all it was a very successful night.

On Friday evening my parents, sister, niece, nephew, Bryce and I all went to the Melting Pot in Torrance to have a birthday/pre-graduation celebration. My birthday was on April 5th; Bryce’s 23rd birthday was on April 10th; and my nephew Matthew’s 16th birthday is on April 14th. We’ve got an abundance of Aries! Dinner was delicious but very filling.

Last night (April 10th) we went out to dinner for Bryce’s 23rd birthday.

The next day we met up with the Berkeley Cuzzins who had driven down the night before to spend time with fam. The cousins are: Marc, Naura and their two kids, Julia (16) and Charles (14). All of the kids (Matthew, Nicole, Julia and Charles) descended on USC on Saturday morning so I could show them around the campus. They’re starting to think about college, so it’s important that I brainwash them and make them want to go to my alma mater.

They really liked USC, especially the tour of the Frat Row…why am I not surprised? After USC we visited Venice Beach, a place I affectionately like to call the Berkeley of the Sea. Venice Beach is amazing. I love to see the reactions that people have to it. The boys LOVED it–they thought it was hilarious. The girls, on the other hand, were slightly weirded out by it.

After Venice Beach I was exhausted. Really, really, REALLY tired. I’m not sure if it was because it was hot outside (about 85 degrees) and we were walking around all day, or because I’m not as recovered from surgery as I thought I was, or both. The next day (Easter) I was still pretty tired too. I went to Bryce’s house for a late lunch and by 7 pm I had passed out upstairs.

So that leads me to the point of this post: when will everything be back to normal? Not to toot my own horn, but I look great after surgery. I feel chipper and if you ran into me on the street, you might never know what had happened. But there are times when I just feel exhausted! And I don’t know why. Are the activities I’m doing really that tiring, or is my body still in recovery mode?

I am itching to get back to my spin classes. I almost went to a class yesterday afternoon at YAS in downtown LA. At the last minute, I decided to email Jeani at Dr. Festekjian’s office to ask her opinion. She talked to Dr. Festekjian and told me to hold off on spinning until I see Dr. Festekjian again and can get his blessing in person.

I was disappointed…I really need the cardio workout! I feel like such a slug. But at the same time, I don’t want to rush it. What if my fatigue really does have to do with my surgery? Spinning might make me feel great for a few hours, but I would feel awful if something happened to jeopardize my tissue expanders and I knew it was because I had pushed myself too hard, too early.

Tomorrow morning at 10 am I have an appointment with Dr. Festekjian to get my first tissue expander fill. Hopefully he’ll give me the OK to go back to spinning. I think I’ll also post some “before and after” pics from my fill (rated G, I promise!)

I’m looking forward to getting the show on the road, but I hope the fill doesn’t hurt. Does anyone have any advice for making it as comfortable as possible?

Check out these ADORABLE cake pops that my friend Kate sent me last week! So yummy and so cute.

 

I think it’s time to deal with the big bad question:

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Why? Why would I have a mastectomy, as a perfectly healthy 21-year-old?

I’ve been avoiding this post for a while–not because I didn’t want to answer the question, but because I didn’t know where it would belong. It seems like something I should have written about a long time ago, before my surgery. And I did write about it, for myself, to justify the decision. But now I want to “go public” with my thought process, because people are right: removing all of my breast tissue at a young age is absolutely ludicrous.

This time last year I was driving home from work, anxiously awaiting the debauchery that would be the following evening: my 21st birthday. At that moment, I was just a normal college student. I was so excited to finally be free of my crappy fake ID, but before that magical first legal drink, I would have to make sure my camera was charged, my hair was straight, and my clutch was packed with the necessary lip glosses and eyeliners.

Celebrating my 21st birthday last April. From left to right: Marissa, Danielle, Rachel, Katy.

Six months later, everything was different. I felt nothing like that girl who was excited to go out to bars with her sorority sisters to celebrate another year. My BRCA test results were in, and it seemed that I would never be the same again.

I was suddenly resentful of my body. I felt so betrayed! My relationship with my body had never been perfect; there were certainly a wonky few years during high school. But since starting college, I’d finally become comfortable being me. And then, when things seemed to be going great in life, my body just threw me under the bus. “Oh hey! You’re gonna get cancer!” No, I guess it wasn’t my body–it was my DNA. That’s what made it even worse, at least at the time: the very essence of my being was flawed.

Oh no…not an awkward photo from high school!

No one could see that I was broken, but I knew it. I just didn’t know when it (cancer) was going to strike. My breasts were–you guessed it–ticking time bombs (oh so that’s where the name comes from!) Every time I caught a glimpse of them in the mirror while changing, I shuddered. I hated them. I didn’t trust them. What if there was a cancerous cell lurking in them already?

The BRCA test results felt like a death sentence. But maybe that’s the wrong way to describe it…I never thought I was going to die…but I never thought I was going to live, either–at least not happily and cancer-free. It was a death sentence for my normal, relatively simple life. It was a sentence for cancer. I read up on the numbers, and I knew how BRCA had played out in my own life: my mom had been diagnosed with breast cancer twice. The fact that I, too, was BRCA positive meant that I was going to get cancer. There wasn’t hope that it would skip me or that I could diet and exercise my way out of it. No. If I lived long enough and had enough breast tissue, I was going to get breast cancer.

These two thoughts–resentment toward my body and belief that I would eventually have cancer–were what drove me to my decision to have a prophylactic mastectomy.

I really hate being depressed. I hate hating myself. I wanted, so badly, to get back on track with my self-esteem and self-image. You can only truly love someone if you love yourself first, and I really hated myself last October when I found out about my BRCA mutation. Imagine how poor Bryce felt?

It’s true that I could have waited one year, five years, ten years–any period of time, perhaps–before having a mastectomy. And I think that if I had waited a few years, I still would have been doing it by choice, not by necessity. But I know that I would have felt so much self-loathing during that time. I was not prepared for those feelings. The drama of my teenage insecurities was hard enough; I did not want to repeat any of that. The sooner I got on with my mastectomy, the sooner I would have reconstruction. The sooner I would have reconstruction, the sooner I would love my breasts–and myself–again.

A mastectomy and reconstruction would give back what the BRCA mutation had taken: my self-esteem. But it would also give me peace of mind. Many women who are at high-risk for breast cancer opt for the surveillance option instead of surgery. They are diligent about their mammograms, MRIs, and breast exams and join special hospital programs for high-risk women.

This was certainly a choice I could have made, but it was too passive. Yes, I could screen the heck out of my breasts, but that wouldn’t stop a tumor from forming. And let me tell you: I’m a worrier. If something hurts (my eyes, my ears, the space between my toes), I go to the webMD Symptom Checker and diagnose myself (and it’s always terminal). Imagine me at a yearly MRI or mammogram? I just know I would be freaked out for days waiting for the results.

Remember when I thought I had esophagus cancer? Thanks, webMD Symptom Checker.

And the way I saw it–again, based on the numbers–was that eventually one of those MRIs or mammograms would come back with a spot. I would get the spot biopsied, and then a doctor would tell me that I have cancer. The doctor, knowing that I have a BRCA mutation, would then strongly suggest a double mastectomy, followed by chemotherapy and maybe radiation.

I would not get to pick when this happened. Cancer would not care if I had a career and children to think of; it would just strike. I would have to halt my life for surgery and a very difficult treatment; I would have to explain to my family what was wrong with me. My mom didn’t get to pick when she was diagnosed with breast cancer. It just happened to her, and at a really sucky time.

When I found out that I had a BRCA mutation, I was given a choice–the choice my mother never had. I could choose when my life would be inconvenienced. I could decide if I wanted it to be because of cancer, or because of me. I decided to stop my life for a few weeks because of me–because of a decision I made myself. If I had decided against a prophylactic mastectomy, I would have to have one at some point, anyway…and it wouldn’t be prophylactic anymore. It would be because I had breast cancer.

My brother Michael put it best in an email to me a few days before my surgery: “Doing this [a mastectomy], or not doing this, are each big decisions.  One choice is potentially fatal, and one is just fucked up.  You chose fucked up, which is clearly the right choice.”

He’s right. It is “fucked up.” It’s ridiculous. It’s upsetting. I was distraught for weeks before my mastectomy, and sometimes now, even after, I get angry and sad and insecure. But it was the right choice. I didn’t cause the stop codon that screwed up my BRCA2 gene. Nothing I ate, drank, said, watched or smelled affected it in any way; it just happened. I couldn’t control it. But now I am in control of my body and health again, and I have my prophylactic mastectomy to thank for that.

I know blogs are supposed to be concise…and that certainly wasn’t. But I hope it made sense. I hope that at least one person out there understands my decision a bit more…I hope it doesn’t seem so crazy and extreme.

I want YOU to get tested for the BRCA mutation in 20 years so you can take control of your health again, future self!

Tomorrow’s my 22nd birthday, and I’ve given myself the gift of life! So cheesy, and so true.

 

Oh hey…

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…so…happy!!!!!!!!!!!

I went out to dinner with Bryce, my good friend Alyssa and Alyssa’s father Bruce, and now I’m exhausted after two delicious drinks so I will just leave you with that beautiful GIF animation. Please note the awesome look I’m donning: a white compression bra under two ace bandages! Gotta flatten to stop any other fluid from forming!

Since my previous recognition post was so well received,

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I think it’s appropriate that I write another one! It’s also quite relevant.

This one is dedicated to everyone’s favorite (okay maybe I’m just a bit biased) person: my mother, Shirley Horn! Yayyyyyy.

Here’s the backstory on why I’m writing about her today: Bryce left this afternoon around 1 pm (after cleaning the apartment and bringing me lunch, what a sweetie) and I sat around in bed for the next six hours. My body ached. Maria, the RN I have been emailing at Dr. Festekjian’s office, told me that I should rest my upper body this weekend. But the lack of movement is making everything hurt! I feel like the way I felt three days out of surgery. Meh.

The drain site on my left is also looking really infected. It’s an angry red and it’s oozing. I think it might have just gotten too loose, and so excess fluid (that should be suctioned through the drain tube) is now exiting on the outside of the tube. When I move, it hurts; it feels like the tube is stabbing me.

I lost it about half an hour ago and just started crying. I felt lonely and angry and I was in pain and I wanted to eat something but I didn’t want to get out of bed because it would hurt. I wanted to go on my computer but my eyes hurt from watching movies and being online so much these past few days. My roommate Danielle is away this weekend, and Bryce couldn’t come back over since he has to watch his dog. So I decided to text my mom.

I begged her to come over and told her she could bring Madeline (the doggy) and said that I wanted her to go with me to see Dr. Festekjian tomorrow afternoon. I was so scared she would say no, she can’t come over. I knew she was making a really nice dinner for my dad and was probably tired from the past few days (we had house guests visiting).

Imagine how happy I was when she texted me back and said “Absolutely. We’ll leave in fifteen minutes.” But then I stepped back for a minute–was I really that surprised that she agreed to come take care of me?

I know she’s supposed to be there for me because she’s my mom, but she always goes above and beyond. Last April when I had to go to the emergency room, she drove all the way down from San Francisco to be with me–even though by the time she arrived, I was already out of the hospital!

When I had my prophylactic mastectomy on March 13th, she volunteered to sleep at the hospital overnight with me. It had never even occurred to me during her surgery in November that someone should stay overnight with her at the hospital. I ended up telling her not to sleepover because I felt well enough and had good nurses who responded quickly to me, but it was still a thoughtful gesture.

The two of us before Mom’s surgery on November 9th!

After I left the hospital and returned home, she had transformed my bedroom into the perfect healing unit, moving her pillows and bedside table in so I wouldn’t have to reach far for anything. She constantly kept my water refreshed and brought me snacks in bed. Every time I showered, she helped me deal with the dressings on my drain site before and after. It’s a yucky job, but she’s always up to it!

This all coincides, you know, with her helping to take care of my dad and the blind diabetic dog! Whether she’s changing dressings on my drain sites, changing the dressings on my dad’s foot wounds, or giving Madeline insulin shots, it seems she has earned the title of Dr. Horn.

Dad has always wanted a doctor in the family–it seems that, without even realizing it, he got one!!! And she’s the best one around. She probably couldn’t have performed Dad’s cardiac surgery last February or improvised as Dr. Karam or Dr. Festekjian during my prophylactic mastectomy, but the fact that she can provide emotional support as well as medical help should make up for that. Dr. Shirley Horn is the best!

Mom and Maddy, out for a bike ride in Redondo Beach last summer. Maddy the Blind Diabetic Dog is lucky to have such a fun person!

 

Sometimes all I need is a little TLC,

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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!

 

The Jackson Pratt drain saga continues

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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?

 

Dear Jackson-Pratt drains,

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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.