Cellulitis 2012: Out Goes the Tissue Expander

Hi everyone. I apologize for not writing in a few days. While it’s true that I am insanely bored at the hospital, by the time I actually have a free moment to sit down and type out a blog post, I am usually exhausted and my eyes hurt too much so I nap instead. This one, however, is going to be exceptionally long. Get ready!

The last time I posted was Friday morning. My IV port had to be changed again since the Vancomycin beat up the first one too much. A new IV was put into my right hand.

Around noon I had an ultrasound on my left breast to check for fluid pockets. Images from the ultrasound revealed that there was one big pocket (I think about 5 cms) and possibly two smaller pockets. A few hours later, I was taken back to radiology to have that pocket aspirated. The radiologists inserted Lidocaine into the area to numb it up then used an ultrasound to locate the exact location of the fluid pocket. They then inserted a big ol’ needle into the area to extract it. In reality, the needle wasn’t very big at all, but since the ultrasound video magnified it it seemed like an eight-inch needle was poking around my body.

The fluid from this pocket was sent for a gram stain and a culture. The initial gram stain did not reveal any bacteria; however the culture could still grow into something after a few days.

When I returned from the aspiration, I noticed that the infection seemed to have spread around my breast. It all seemed very red. I was nervous. Friday was a very emotional day for me; I spent a lot of time crying and wallowing in self-pity.

My parents finally found out I was in the hospital on Friday evening. They had been on a road trip to the Grand Canyon since Tuesday April 24. I did NOT want to ruin their vacation by telling them about my hospitalization. I know, I know…I’ve heard from plenty of moms that it wasn’t MY choice if my parents wanted to come back early, and that parents want to know everything no matter the circumstances. But honestly, my family has had really bad luck when it comes to family illnesses and vacations and they deserved to see the Grand Canyon. Plus, I knew that my parents were planning to head up to our house in Yosemite after visiting the Grand Canyon. I wasn’t overly fussed about them not missing the Yosemite portion of the trip, since they can go up north another time. Instead of leaving Barstow to head north on Saturday morning, they stayed south to get into Los Angeles.

By noon on Saturday they were at the hospital. It was nice having them there, because they are medical-savvy and know how to talk to doctors. Having been through her own double mastectomy, my mom is familiar with the terms, processes, and side-effects. My dad, on the other hand (or should I say “foot”…wait for it!) , spent quite a few months in and out of UCSF in 2011 due to an infection on his feet. He had an IV of Vancomycin, too.

My friend Kaitlin stopped by the hospital on Saturday afternoon. It was such a pleasant surprise. She brought with her a book and an adorable little stuffed animal elephant. I immediately latched onto the fluffy gray creature. His name is Kapow and he’s my lucky elephant.

Kapow transfers some of his luck to me, trunk to nose.

On Sunday my infection did look better, and my veins were feeling even worse. The Vancomycin is so harsh that it burns my veins. Every time a drop went through the IV port on my hand, I could feel it sting. We had to take that IV port out. A transport nurse tried to place another IV; he poked me one more time and it still didn’t work. At that point, he made it clear that I couldn’t be poked anymore because the risk of infection was too high. If they wanted to put in any more antibiotics or draw anymore blood, I would need a PICC line, but the staff members who put in PICCs don’t work on the weekends.

Dr. Galanis, the Chief Plastics Resident at UCLA, came by to say that he was putting me on an oral antibiotic for the day and night and that I should be prepared to go into surgery on Monday morning, which meant no eating or drinking after midnight. Nothing was for sure yet, but the fact that my infection was getting worse was an obvious bad sign. If you want to see what the infection looked like before my surgery, please email me. It’s not a pretty pic, but I’m happy to send it to you if you think you have an infection.

It was very relaxing not being connected to an IV at all on Sunday. I could shower and actually use both hands (during the first shower I had a plastic glove over my hand to protect the IV) and I could move around without worrying about accidentally pulling out the IV. I spent a lot of Sunday reading the book Kaitlin brought over, called Bitter Is the New Black by Jen Lancaster. It was a quick and somewhat mindless read about a former sorority girl turned business exec turned unemployed mess. I breezed through the entire book in one day, and was pleased by the happy ending, in which the writer gets a book deal! (Oh please let that be MY happy ending!)

On Sunday at midnight I started my eating and drinking fast. Not eating was easy. The heavy antibiotics have temporarily killed my taste buds and ruined my digestive system; whatever I eat comes out the other end pretty quickly. That doesn’t give me much incentive to eat. Drinking, however, is difficult; since I’m so used to being poked for veins, my natural reaction is to drink as much water as possible in order to plump them up. But I had to avoid the water so I wouldn’t be sick if I needed anesthesia.

On Monday morning my parents came over early, as did members of Dr. Festekjian’s team (Dr. Galanis included). They said it was highly likely that I would have the tissue expander removed, but they would leave the ultimate decision to Dr. Festekjian. He came in about an hour later and told me it would have to go because we were “fighting a losing battle.” At that point, I didn’t care anymore. I had read online about many women who stayed on some awful antibiotics for weeks, suffering the side effects, only to have to remove the tissue expander anyway.

Around 11 am I had a PICC line installed. A PICC line is a central venous catheter, a more permanent form of an IV; it goes through the arm and hooks up with a major blood vein near the heart. It can withstand the beatings from tough drugs like Vancomycin, and it can also be used to draw blood. While I’m here, I’ll never have to be poked again! Whoohoo!

Around 1 pm I was taken down to the OR to have my tissue expander removed. I woke up later in the recovery room and demanded ice. Whatever anesthesia they give me at UCLA is great; I am never nauseous after waking up and can guzzle water like it’s my job.

I was moved back up to my room about half an hour later. Someone from Dr. Festekjian’s team (I was still kind of out of it so I don’t remember who) came by to tell me that they had found some additional spots of infection near the tissue expander. They are culturing those right now.

In order to give me some nourishment, I’ve been hooked up to an IV drip since yesterday. There was also a drip for pain meds.

I felt fine when I woke up today. In the afternoon Dr. Galanis took a peek at my left breast (or total lack thereof at this point!) and said it was still red but it looked better. I have only seen the top of it through the tight bandage; it looks like a wrinkly skin crater. Ewwwww.

My parents visited in the morning, and then I was surprised by two friends from work, Garineh and Mia. They came with a card signed by everyone who sits around my desk and a Jamba Juice…perfect! Jamba Juice is the only food I’ve been eating. About an hour before they arrived, some beautiful yellow flowers were also delivered from my team at Demand Media.

Mia (on the left) and Garineh (right) came to visit me from work! Please note my lovely halter bra and drain. Yep, I have another drain.

And now I am going to tell you all the highlight of today…drumroll please…

I got to see a doggy!!!! After hounding (bahaha) the UCLA People Animal Connection for three days, we were finally successful in getting a real live dog to visit me. His name is Scout and he’s 10 1/2 years old. He’s a German Shepard mix and he is so sweet. He sat on my bed and let me pet him for half an hour. His owner, Beth, told me about the strict requirements for volunteer dogs. It was very impressive–she should be proud that her dog was accepted at UCLA!

Scout was so friendly!

I hope that I can continue to bother the People Animal Connection in order to receive visits from more of my four-legged friends. Animals brighten my day so much. I must figure out a way to sneak Madeline inside. Let me know if you have any ideas! Now off to bed.

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Cellulitis 2012: Back in the hospital!

Yesterday I went to my 3 pm tissue expander fill at Dr. Festekjian’s office, which I was pretty sure would not actually be a fill since my left breast looked so swollen and red. Maria looked at it and agreed that Dr. Festekjian should definitely check it out. He came in, asked me about the time frame of what happened (I slept on my tissue expanders on Saturday night, felt pain on Sunday morning, etc.), and then examined the area. He then looked at me and said, “You have to go to the hospital.”

For a second there I wasn’t sure if he was trying to like, joke with me or something. I just kind of stared at him. He didn’t ask any questions or do any tests, just–“hospital!”

Then I started to get pretty upset. He mentioned the word “cellulitis” and said that I needed to get an IV with some heavy antibiotics. I asked him how often he sees this; he said each year, typically three or four patients will have cellulitis after a mastectomy…which is out of about 140 mastectomy patients. SWEET. Of course it would happen to me, the “young and healthy” patient.

Here’s a picture of my cellulitis…I’m not posting it directly in the blog because I know some people can get a little queasy from medical stuff!

He said he would take care of the arrangements to get me admitted next door at Ronald Reagan UCLA Medical Center (the hospital portion). After about 15 minutes, Maria came into the room and told me they were ready for me at admissions.

Now it’s lucky, I guess, that I am constantly driving from home to home (my apartment, my parents’ place, Bryce’s house) and half of my life is in my car. We walked down there and I was able to grab my laptop and charger as well as some clean clothes. The car itself presented a new problem: what was I supposed to do with it? UCLA is not very flexible with their patients when it comes to parking. Maria said I could leave my car there overnight, but unless someone took it out of the parking garage, went back in to get a new ticket, and parked in a new spot, I would get a parking ticket. Luckily my friend Kate said she’d help figure out the parking situation.

As we walked over to the hospital, I asked Maria what the next few days would be like. She said I should expect to be at the hospital for the entire weekend since Dr. Festekjian would be the one to make the ultimate decision to discharge me. She explained that over the course of the next few days, I would be given an IV drip of antibiotics in order to try to fight a broad range of bacteria (cellulitis, I’ve since learned, is just the name for a general bacterial skin infection.) If the antibiotics work successfully, the area will be monitored and given a few weeks to rest before my tissue expander fills continue.

If the antibiotics don’t work…well, this is the fun part of which I am really terrified: the tissue expander will be removed for at least two or three months.

I think we can all agree that the latter option sounds awful. Given those two choices, I definitely support the IV antibiotics route! (Though it’s not like I have an actual say in this…what Festekjian wants, Festekjian gets.)

Around 4:15 pm I completed admissions papers at Ronald Reagan UCLA Medical Center. I was finally assigned a room on the sixth floor (6347 West) around 5:00 pm. There’s a view of UCLA’s football field, and I can see the helipad–pretty cool.

To the left is the UCLA football field; to the top right is the helipad.

For the next few hours, I sat around…doing nothing. My lovely roomie Danielle showed up around 6 pm with salads and GIANT chocolate chip cookies. I was ravenous, and that meal hit the spot!

Someone came in to draw blood around 6:30 pm. FAIL. My veins are awful, I know. Everyone tells me how nonexistent they are. In the past, however, I’ve never actually had a problem getting blood drawn. He stabbed my left arm and a few minutes later dumped the vials into the toxic waste bin, saying “I’ll have to call in someone else.” He hadn’t gotten any blood!

I started chugging water. This was my first “surprise” blood test; usually I know it’s coming so I drink a lot of water the day before and morning of in order to plump up my veins.

Another woman came in about twenty minutes later. She continued to poke and prod me, looking for a good vein. Nope.

Bryce and his mom showed up later in the evening, which was a pleasant surprise. I had told Bryce not to worry about visiting me the first night since he was planning on spending the night at the hospital on Friday. My friend Kate, who goes to UCLA, also dropped by…with snacks and tampons! AND she was able to find a parking spot for my car–what a lifesaver!

Another phlebotomy specialist came in. He looked much more serious than the first two…he meant business! I explained that I really hated needles and would appreciate if he could apply some numbing cream before poking me. He spent a good deal of time lifting up my arms and using a tourniquet to try to find a vein. Finally he settled on a vein on the side of my left wrist. He applied the cream, and about fifteen minutes later, stuck in the needle. And…there was nothing. He poked around with the needle, trying to strike gold with a vein. NOPE.

He had to call in the big guns: an ICU nurse. Together, they poked and prodded even more. Finally, the ICU nurse (who was hilarious, by the way; a Londoner who my dad would have loved) zeroed in on a vein in the elbow crevice of my right arm. He slapped at it for a good three minutes, and as soon as it popped up again, he went for it…and there was success! We all clapped. At least not all of the efforts were in vain! (…pun…hahaha)

They took two vials of blood and also used that area for my IV port. Around 10 pm my nurse hooked up the antibiotics to the IV. Finally, treatment!

I know one of the antibiotics was Vancomycin, and boy, did it make my head itch!!! I learned online that an itching scalp is a common reaction from Vancomycin and that Benadryl should help it. My nurse injected some Benadryl into my IV, the itching stopped, and I finally got to sleep.

Members of the plastic surgery team (Maria included) woke me up bright and early at 7 am today. I don’t know when they arrived at work, but I’m still amazed at how happy and put-together they all were. Give me a break! I’m lying in bed with hair like Einstein’s from all of the itching, and  then these beautiful, smiling people suddenly surround me. It was a sneak attack!

Maria checked on my left breast and said that it already looked to be improving. YES!

Cellulitis, you are EVIL. I need to do more research on the topic, but I’ve gathered the following from WebMD:

“Cellulitis is a skin infection caused by bacteria. Normally, your skin helps protect you from infection. But if you have a cut, sore, or insect bite, bacteria can get into the skin and spread to deeper tissues. If it is not treated with antibiotics, the infection can spread to the blood or lymph nodes. This can be deadly.”

“At first, the infected area will be warm, red, swollen, and tender. As the infection spreads, you may have a fever, chills, and swollen glands.”

Well, that all sounds accurate to me: I had a major surgery involving a cut, the area is definitely red and swollen, and I really started to feel sick when I developed a fever.

Today I will have an ultrasound of my left breast to make sure there isn’t any fluid buildup. If there is, it will need to be drained. Fingers crossed there’s no fluid!

Well, that’s it for now. My nurse just started another IV drip. Check back for more updates on Cellulitis 2012!

 

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.

 

Shopping for the Post-Mastectomy Patient

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?

 

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.