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!

 

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Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

Now for something more uplifting:

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

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

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

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

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

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

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

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

 

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?

 

Tissue expander fill #1 video

Hey all: Here is the promised video clip of my first tissue expander fill on Thursday. Remember that Maria only filled the right breast with saline. The brown stuff is iodine to sterilize my skin.

Tissue expander fill #1

Yesterday I had my first tissue expander fill at Dr. Festekjian’s office.

For those of you who still aren’t sure of how the breast reconstruction process following a mastectomy works, here’s a rundown: after Dr. Karam performed the mastectomy (removing all breast tissue) portion of my surgery on March 13th, Dr. Festekjian came in to insert saline tissue expanders underneath a layer of my pectoral muscles. These tissue expanders are essentially little baggies that create a pocket in the muscle. They have a needle port on top, and over time, additional saline is inserted so that the baggie and the pocket can grow. Once the tissue expander has been filled enough and the muscle pocket is large enough, the tissue expander is removed and a permanent silicone implant is inserted into the pocket.

During my initial surgery, Dr. Festekjian put about 300 ccs of saline into each tissue expander. This is a pretty decent amount of saline, so when I woke up from my surgery, I actually had breasts–yes, they were small, an A cup, but there was still something there on my chest.

Yesterday Dr. Festekjian took a look at both sides. I was concerned because my left breast seems to be bigger than the right. It had only started to look like that a few days after my drains were removed, so I was worried that I had a fluid buildup. Dr. Festekjian said that there was no fluid (yes! The evil fluid, defeated!) but that the tissue on the left was “still a little pissed off” (wise words) and that it was swelling. He decided to expand only the right side, in order to make them match a bit more appearance-wise but also to let the left side heal more.

Maria, one of the RN’s in Dr. Festekjian’s office who is pretty much awesome (she removed my drains last Monday), did the fill. Sidenote: I really like Maria. She is very understanding and has a lot of patience. I took some before and after pictures, a picture of the tools, and also a video of the fill happening. Since I have to run to work right now, I’m only going to post the pictures.

These are the tools that are used for the tissue expander fill: the giant plastic syringe is where the saline goes, and the little green needle is what is actually inserted into the skin. The two connect at the top of the needle, and the saline is slowly pushed through the syringe into the needle and then into the tissue expander.

Before going to talk to another patient, Dr. Festekjian used a magnetic device to “locate” the tissue expander port through my skin. He then marked it with blue ink–“X marks the spot”, redefined! He disinfected my skin with some sort of brown substance, I think it was iodine. He then made sure I was OK with Maria performing the fill. He said he could do it himself, but I was already scheduled to see Maria the following Thursday for my second fill and I totally trust her, so I was fine with it.

The fill itself did not hurt, but I felt the needle prick for sure. That was the worst part (as it always is). I thought I would be able to feel the saline going into my tissue expander and making my muscle tighten, but I didn’t feel it at all. Maria was very slow and steady with the saline syringe.

She inserted 75 ccs of saline, removed the needle and then put a bandage over my skin where the needle had been. I could see a difference in that my breast didn’t look as droopy. I took a before and after picture, but since I have my bra on for both it’s kind of hard to tell. The biggest difference you can see is the fact that my bra doesn’t look as saggy.

On the left: before the expansion. On the right: after the expansion. Note that only the right side (in this case, looking at me, the left side) was expanded.

I thought I would be in pain after the fill. A lot of women experience tightness (from the muscle stretching) and have to take pain meds. It’s been almost 24 hours and I haven’t felt any pain at all.

My next fill is going to be next Thursday. Fingers crossed that I get both sides expanded! Jeani, Dr. Festekjian’s wonderful assistant, booked me for my next five fill appointments, every Thursday starting yesterday. We’re not sure I’ll need that many, but it’s nice to have them planned out.

I’m happy now. This process is really happening! My reconstruction is starting!

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

Oh no…not an awkward photo from high school!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Oh hey…

…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!