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!

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The Jackson Pratt drain saga continues

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

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

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

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

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

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

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

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

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

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

 

Ugh, my Jackson Pratt drain broke!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

OMG I took a shower!

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

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

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

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

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

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

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

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

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

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

 

One week out from my mastectomy: my notes

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

My pain level is doable.

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

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

The drains are much more than I bargained for.

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

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

I’m not stuck in bed.

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

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

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

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

I’m surprisingly OK with not showering.

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

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

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

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

My lion mane after brushing out the french braids.

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

I’ve accepted how I look right now.

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

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

 

Dear Jackson-Pratt drains,

I hate you.

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

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

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

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

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

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

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

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

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

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

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

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