Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

Now for something more uplifting:

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

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

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

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

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

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

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

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

 

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!

 

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

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.

 

Oh hey…

…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,

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,

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

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.