Expander fills resumed, Making Strides, and a bit of promotion

Last Thursday I had my first tissue expander fill since having the left expander inserted on July 30. It was AWESOME–simple joys, right? I was so excited and anxious that I told myself I was going to let Dr. Festekjian do the fill without numbing me up. Of course I reneged on this decision, since I am a baby when it comes to pain and just the sight of the syringe and needle scared me into the numbing cream.

The numbing cream only delayed the process by a few minutes so it was totally worth it; I could barely feel the needle go in. Dr. Festekjian filled up the left side with 75 ccs of saline. We are going to let the left tissue expander “catch up” to the right tissue expander before we resume fills on that side. Right now my left side is at 325 ccs and my right is at 550 ccs. Each tissue expander can accommodate 750 ccs of saline. I anticipate I’ll need about nine more fills (at 50 ccs each) until I reach the maximum capacity.

On Sunday morning, Bryce and I woke up bright and early for the Making Strides Against Breast Cancer 5K walk in Santa Monica. I stayed up late the night before preparing my talking points for the survivor’s speech (or in my case, previvor). Bryce and I both wore Demand Media team t-shirts for the event and pink sunglasses; he looked very sexy in his pair, I must say.

Team Demand Media–I’m so proud to work with these people!

The event was small (compared to the 3-Day walks I’ve done in the past) but very successful and well-organized. There were at least 100 people there, and the sponsors included Demand Media (whoot whoot represent!), Equinox gym, and Go Country 105—my favorite radio station!

My “previvor” speech came after the address by an American Cancer Society rep. Since it was rather toasty outside, I tried to stay concise and upbeat. I ended up ditching my page of talking points as soon as I got up on stage. I mean, who am I kidding? This is MY story—I know it by heart!

I talked about my mom’s multiple cancer diagnoses and how I reacted to each one. In terms of her second diagnosis, I mentioned how angry and frustrated I felt and how many questions I had, and that those questions were all answered when we found out about the BRCA mutation. Then of course I talked about my own decision to have a prophylactic mastectomy, and though I’m fortunate to have that option, hopefully research will make it possible for my future children to have another more “civilized” option. I really wanted to connect a story about breast cancer to the walkers and their fundraising efforts, to let them know that the money they raised was going to help someone in a tangible way.

I walked in honor of my mom and my cousin Robbie.

After my speech, the walk started. We marched around a local park for about an hour; apparently four laps around said park is equivalent to a 5K. Once everyone was back from the walk, Kate (the Demand Media employee who helped plan the event) announced that we’d raised over $18,000! I was very impressed.

Kate did a stellar job organizing the event. It must have been very stressful for her to plan a charity walk while keeping up with her full time job. But she pulled it off and I’m proud to work with her. Good job, Kate!

Thanks for organizing the event, Kate!

Now, onto that product promotion I mentioned in the title of the post. I don’t do this very often so I feel that I’m allowed to include it now!

First off, my fabulous and talented mother Shirley Horn has decided (after much badgering from me) to launch her own online store, called Precious Survivors. What is she selling? Well, that is a good question! CUSTOM DRAIN POCKETS AND MASTECTOMY PILLOWS AND HAND-PAINTED ORNAMENTS! (Gee, that sounds swell!) Inspired by Trisha’s mastectomy and her hunt for a mastectomy bra, Mom created some adorable drain pockets. They have velcro attachments to connect to a mastectomy bra, and they are so colorful and cheerful. And they’re only $6 a pair!

Mastectomy pit pillows made by Shirley Horn

She is also selling handmade post-surgical “pit pillows”, heart-shaped pillows to rest under your arms after a mastectomy. My friend Kim gave me a pit pillow for my mastectomy, and it was perfect; it wasn’t too hard or too soft and my arm rested in the crevice without any pain. The pit pillows currently listed are Hello Kitty print, but Mom will take custom orders for a different fabric.

A portion of all of the sales from Precious Survivors goes towards breast cancer programs, such as the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. Dragon boat racing is a great way for breast cancer survivors to prevent lymphedema, which can be caused by lymph node removal.

If you’re looking for a gift to give a loved one who is about to have a mastectomy, check out the Precious Survivors storefront. Mom created these products based on both of our experiences with mastectomies, so they are definitely patient-approved!

Now onto the other promotion. A few weeks ago I received a lovely email from a woman named Ann Victor, the president of PerfectCami, a fashion company. Recently Ann has designed a line of camisoles aimed at the post-mastectomy crowd. She graciously sent me a few to try out, and I LOVE them.

The camis attach to your bra straps and therefore stay in place when you bend over. I am always worried about people seeing the inserts on my left side; the camis prevent any accidental insert flashing! They also work nicely to cover bra cups and straps. The bras I wore before my mastectomy were underwire and the cups did not extend high up on my chest; the soft bras I use now have more fabric, so it’s difficult to wear any relatively low-cut shirts or dresses without the bra peeking through. The camis hide the bra perfectly.

If you’re interested in ordering any of the camis, visit the PerfectCami website. They come in a variety of colors and styles (I’ve got red lace, black lace, white striped, black striped, leopard and a few more!) and five sizes.

OK, signing off now. I have to get ready for my trip to Vegas this weekend! Have a great weekend everyone.

 

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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?

 

Ugh, my Jackson Pratt drain broke!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

One week out from my mastectomy: my notes

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

My pain level is doable.

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

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

The drains are much more than I bargained for.

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

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

I’m not stuck in bed.

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

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

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

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

I’m surprisingly OK with not showering.

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

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

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

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

My lion mane after brushing out the french braids.

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

I’ve accepted how I look right now.

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

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

 

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.