One week after the tissue expander placement

It’s been one week since my tissue expander placement surgery, and I feel great! I went back to work today and spent a long day (9 am-7 pm) in the office, sans pain medicine.

I’ll recap what last week was like:

After my parents and Trisha left on Monday, I did a bit of reading and then decided to go to bed. Sleep, however, did not come very smoothly. The pain pump that had earlier been my best friend turned against me by making me itch. It wasn’t the same awful head itching I felt when my Vancomycin IV started in April. It was more of a general body itching, but enough to wake me up every twenty minutes or so.

The nurse gave me Benadryl but that didn’t seem to help, so around 3 am we made the decision to switch from my pain pump meds (not sure what these were) to the painkiller Percocet. I was finally able to fall asleep for a few hours around 4 am.

By 6:30 am, Mom was in my room. Unlike at Ronald Reagan Hospital where discharge is 11 am, the Outpatient Surgery Center discharge for the special overnighters like me is very early (at 6:37 am! That’s a joke for Mom). And sure enough, Dr. Festekjian was in the room by 7 am, ready to kick me out.

He gave me instructions for the week, such as when to take my antibiotics and when I was okay to shower. He also cut off my stylish ace bandage bandeau bra and took out my PICC line. And he even agreed to pose for a photo, since he’s a blog celebrity and all.

Even early in the morning, Dr. Festekjian looks dapper…unlike me.

I spent most of Tuesday sleeping since I got little sleep the night before. Bryce did come over and we lounged around watching movies. On Wednesday evening my friend Kim visited after she got off work. We had dinner and went on a walk. I started switching from Percocet to regular Tylenol on Wednesday.

On Thursday I worked from home. Luckily my manager Jerri is very understanding of this strange and often complicated medical situation, so she helped me create a work project that would be doable from home: scrapbooking.

That’s right, I was paid to scrapbook. I work as an Associate Editor at eHow.com, and one of our new products is called Spark. It’s sort of like a bulletin board for the web; you can clip photos and text from around the Internet onto one space.  My Spark boards give instructions for creating scrapbook pages in a more visual format. You can see one I finished, How to Create Graduation Scrapbook Pages.

I also took a shower on Thursday. Aw, the first shower after surgery—pure bliss. I could have showered on Wednesday, but my PICC line bruise made me nervous, so I waited an extra day to be safe.

The bruise is horrendous. It looks like I was punched in the arm by someone very large and very angry. When I had a PICC line on my right arm in April, the bruising was minimal. When I first took a good look at this bruise, it really did freak me out. But I consulted Drs. Horn and Horn and they assured me that it was perfectly normal. And sure enough, the bruise has gone down.

Yes, I took that picture today, and yes, it does still look awful after a week. But you should see the other guy!

On Friday morning, Mom and I hopped in the car and drove up to Los Angeles to the Playboy Mansion to pick up Trisha to go shopping. This, however, was no ordinary shopping trip: we were in search of mastectomy bras and cotton breast forms! After giving Mom a quick tour of the Mansion, we headed to Miss Stevens, a lingerie store.

Mom was definitely a fan of Mr. Hefner’s digs.

Miss Stevens is a store known for its wide array of undergarments to fit unusual sizes and needs. My mom bought her mastectomy bras there and the one that I eventually wore, so no doubt the ladies there are well-versed in mastectomies. However it still felt surreal for Trisha and I to walk in–two young girls in their twenties–and ask for mastectomy bras and breast forms.

The lady at the counter did not miss a beat, and immediately shooed me to a fitting room. I further explained my situation to her, and finally unbuttoned my shirt to show the differences in size. The exact current measurements are 250 ccs of saline in the left tissue expander, 550 ccs of saline in the right tissue expander.

She presented me with various options, ranging from adjustable silicone forms to small bra cup inserts. The silicone forms are always nice, but man! were they expensive. The one she showed me was at least $250! I love myself and I want to look my best, but I am not going to spend that much money just to be even-chested for a month.

I opted for two cup-like inserts. Layered one on top of the other, they give enough shape to match the 550 ccs on the right. Once I am filled up a bit more, I will only need one of the inserts. And then soon (hopefully by mid September) I’ll be even on both sides!

The inserts ended up totaling only $12; pretty good compared to the silicone option. Trisha graciously paid for my inserts as a “thank you” for taking her shopping. Her search for a mastectomy bra was a bit more difficult.

Since she has such a small frame, even the smallest sizes of the mastectomy bras would end up being too big for her after her mastectomy. Sure she could pin them to keep them tight, but that would require constant adjusting…not fun or practical!

After much debate, she ended up buying a mastectomy bra that also works as a compression bra. I think it’s Amoena #2161. My mom used the same kind after her implant exchange surgery, and I have used it too, though it can be a bit itchy so I prefer my softer mastectomy bra. But it opens in front and the stretchy fabric will stay tight on Trisha; plus it has Velcro at the bottom for drain pockets to attach.

Of course it doesn’t actually come with drain pockets, which is so bizarre to me. Drain pockets are probably the cheapest thing to manufacture; they are just little scraps of fabric with Velcro on one side! But for whatever reason, many mastectomy bras don’t actually come with them. Luckily my mother the seamstress has some ideas in mind for Trisha’s drain pockets!

On Saturday morning I drove for the first time, up to the bagel store. Later in the evening I drove all the way to Bryce’s house, which is about an hour away. I definitely favor my right side when I drive so I didn’t feel much strain.

The pain meds finally caught up to me yesterday morning. I’d been mostly taking Tylenol for pain, but sometimes at night I did take a Percocet. I ended up having a splitting headache that started around 10:30 am. I rarely get headaches that are more than just a dull pain, so this one really took me by surprise. I called Mom, almost in tears, and she told me to try to sleep it off in a dark room with a cold compress on my head. The headache was gone by 1 pm (thanks Mom!) and I am officially OFF of Percocet because that was just too painful.

It’s funny how pain medication can sometimes cause more problems than the actual pain is worth.

Today I scheduled my post-op appointment with Dr. Festekjian. I’ll be seeing him on Thursday at 3:45 pm. Hopefully he’ll give me the all-clear to start my tissue expander fills the following week!

I leave you with this picture of me this evening with the two cup inserts in: WHICH SIDE IS SMALLER THAN THE OTHER?! It’s an optical illusion oooooooohhhhoooooh! (OK cut the crap, Rachel.)

 

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Tissue expander placement surgery update

Well, it’s official: I am back on track with my breast reconstruction! My left tissue expander was placed this morning.

I spent all day yesterday chugging water; I must have consumed two gallons! I hate not being able to eat or drink after midnight the night before surgery. Since I was scheduled to receive a PICC line, I knew that drinking all of that water would make no difference for my veins. It’s just a mental thing.

But sure enough, as soon as I woke up this morning, I was thirsty. My mouth felt like the freakin’ Sahara today! Just knowing I can’t drink water makes my body trick me. Argh!

I arrived at UCLA around 7:30 am and had my PICC line placed at the radiology area of Ronald Reagan Hospital. The nurse who put in the PICC, Jessica, was very sweet and approachable. We talked the whole time she was working on my left arm, making it go by quickly. The pain was minimal, just a bit of a pinch from shots of numbing medication.

After she placed the PICC line, Jessica walked me back to the check-in area and told me what I couldn’t do with the PICC line in. The best “no-no” was scuba diving…she actually told me I couldn’t scuba dive. I laughed it off, but she said that she once had a patient go scuba diving with a PICC and it got infected. I mean, really? Come on! How thick can you get?

Needless to say, I have NO plans to scuba dive.

Mom and I walked from Ronald Reagan Hospital to the 200 building and headed up to the Outpatient Surgery Center around 8:50 am. I’m quite familiar with that area since Mom had her oopherectomy and implant-exchange surgery there in February. I checked in and was brought back to the pre-op area almost immediately.

I spent the next hour sitting in bed with my attractive blue hospital gown and hair net as nurses and doctors bombarded me with questions. “Do you have any allergies?” Sulfa. “When was your last surgery?” April 30. “Did you get a PICC line?” Yes, notice the strange tube coming out of my arm.

Finally, my best friend, the man of the hour, the genius himself Dr. Festekjian came to see me. He marked up my chest like a ninth-grader graphing in Geometry class. Symmetry is good, so he wanted to give himself the best markers for placing the tissue expander! Hey, it works for me. He’s the artist and I trust his judgment!

Next I was given some calming medication through the PICC line, and then I was wheeled back into the operating room. Things get blurry from there, but I do remember thinking that the OR was very cluttered and bright. Doctors and nurses were all around me, covering me in blankets and poking me with monitors…

And then I woke up!

That’s one happy camper! Notice my stylish bra.

I think I was out for about an hour and a half. Since my procedure was outpatient, they did not give me a pain pump. BADDDDD idea. Of my now three surgeries (initial mastectomy, tissue expander removal, and today’s tissue expander placement) this was by far the most painful! My entire left side felt very heavy and there was a lot pressure. The nurses kept giving me pain meds through the PICC line, but I was not having it.

Finally, Mom took action. “How long does she have to be a 10 out of 10 on the pain scale before she can get an order for a pain pump?” You go, Mom! As soon as she asked that, Dr. Festekjian was paged and a pain pump was installed.

Once I got the pain pump I felt infinitely better.

Dr. Festekjian has me on IV antibiotics for precautionary measures, so I’m staying overnight. My room is very small and has a stunning view of a parking lot. Unfortunately there is no bathroom in my room (unlike the rooms in the actual hospital) so I have to walk into the hall to use the bathroom, but that’s okay because I want to be as mobile as possible. Lying in bed all day can get very boring and even a bit painful.

I’ll be discharged early tomorrow morning (by 7 am) and Dr. Festekjian will send me home on oral antibiotics. If all goes smoothly, he’ll start my tissue expander fills in two weeks. I think he filled me up to 200 ccs when he placed the expander, but I have to wear my lovely ace bandage bra for a while so I can’t really tell.

Trisha came to visit me around 6:30 pm. It was so nice to see her! She brought me beautiful purple flowers. Purple is my favorite color. We chatted for about half an hour and then my parents showed up with dinner for me, so we all sat around talking for a while.

Aren’t they beautiful? Thanks, Trisha!

Talking to Trisha was great because she understands what I’m going through. Her prophylactic mastectomy is scheduled for August 15, so it’s been on her mind a lot. I must brainstorm what I can give her for a pre-surgery care package!

I look like a giant compared to Trisha, she is so petite!

Trisha and my parents left about 45 minutes ago. I’m going to try to get some sleep now since I haven’t slept much today.

Thank you all for all of your support. I really appreciate the suggestions you left on my last post for evening out my tissue expanders–I’m definitely going to try some of them out!

P.S: Guess what I don’t have…DRAINS!!!! Oh, happy day!

 

I see a tissue expander in my future…

Can you believe it’s been three months since that awful episode of cellulitis? I really can’t. But it’s true! And you know what that means…

TISSUE EXPANDER REPLACEMENT SURGERY–YAY!!!!

This coming Monday, July 30, I’ll be making the trek back up to what seems like my home away from home, UCLA Medical Center. At 8 am I am scheduled to have a PICC line placed at Ronald Reagan hospital; following the PICC line procedure, I’ll head over to the UCLA Outpatient Surgery Center in the building next door to have my tissue expander placed.

It was a bit of a hassle to get approval for the PICC line, but I’m so glad we were pushy (shout out to my mom for making it happen!) For those of you who don’t remember, I have BAD veins. They run and hide when I get within five miles of a medical facility.

When I know I am going to have my blood drawn, I prepare the day before by drinking a lot of water to pump up my veins. When I was admitted to the hospital for a cellulitis infection in late April, my veins were not prepared for needles and I was already dehydrated from being sick. When the nurses tried to draw blood, it took them three pokes (with multiple people involved) until they had success; when they tried to start IV antibiotics, it was even worse.

I ended up being poked for blood and IVs about ten times during that hospital stay because my veins would either not produce any blood or they were too fragile for the strong antibiotics. By the third day at the hospital, none of my veins were strong enough for a simple IV, so I was switched to the PICC line.

The PICC line was my savior. I never thought I would love something attached to a needle as much as I loved that PICC line.

“PICC” stands for peripherally inserted central catheter. It is a small needle attached to a port that is inserted into a deep vein (in my case, in my upper right arm). It’s then fished through to another vein close to the heart. A PICC line can stay in place for weeks without being changed, and it can be used to draw blood and to administer fluids such as antibiotics. For those of you who know my family, when my dad was at UCSF in 2010/2011 with a foot infection, he received routine antibiotic infusions through a PICC line.

An illustration of how a PICC line works, from Macmillan Cancer Support’s website http://www.macmillan.org.uk.

Once my PICC line was inserted in April, the rest of my hospital stay was a breeze. I didn’t feel any burning from the antibiotics and no one had to poke me in the middle of the night for blood tests.

This time around, my mom and I have been adamant that I receive a PICC line from the start. I know Dr. Festekjian is going to put me on IV antibiotics as a precaution, and I know I am going to be put under anesthesia. Both of those things mean needles. Any needle poke runs the risk of infection; with my non-compliant veins and history of infection, why would I want to take any chances? PICC line, here I come!

In terms of the actual tissue expander replacement surgery, I anticipate that it will be pretty easy. It’s performed in UCLA’s outpatient building, which already makes it seem more minor. There’s a good chance I will stay in the hospital overnight just to be safe, which is fine with me. And I only plan on taking one week off from work, as opposed to the three I took after my mastectomy surgery in March.

To be honest, the biggest concern I have is what I’ll look like with my newly-inserted tissue expander. I’ve really adjusted to having my cotton prosthesis and Waterproof Falsie; they are the perfect size to match the 550 cc tissue expander on the right side! But when Dr. Festekjian puts the new tissue expander in the left side, he will probably only fill it up to about 200 ccs; tiny in comparison to the other one!

Does anyone have any suggestions for what I can do to not look lopsided? There will probably be at least one month of unevenness; I don’t expect to start my saline fills until two weeks after this surgery. And even when the fills do start, it will take a few sessions before my left tissue expander is equal to my right expander.

Okay, nothing could be more lopsided than this: tissue expander on the right side, nothing but chest wall on the left!

I’d love to hear what people think. My initial thought is to use socks or something to fill empty bra space. Anyone else have a better idea?!

I expect to post an update on Monday or Tuesday following my surgery, so be on the lookout for that. And all positive vibes and thoughts are appreciated as I get ready for Monday! Thank you. =)

 

Memorial Day weekend and the completion of my bikini!

I’m sorry it’s been over a week since I’ve written. Not much happened last week, besides going to work each day.

HOWEVER…last weekend…well, that was awesome!

On Thursday I left the office at 1 pm and met Bryce, Danielle, and Danielle’s boyfriend John at my house at USC. Bryce’s best friend (also named John) and his girlfriend Wdee also met us there. Around 2 pm, after packing the cars, we all got on the road to head up to Camp Horn in Northern California.

Camp Horn is our home away from home, our sanctuary in the Sierras, our lair by the lake. It’s located in Pine Mountain Lake, a gated community within the town of Groveland that’s situated just 26 miles west of Yosemite.

The Memorial Day trip to Camp Horn had been planned for over two months, but after my tissue expander was removed, I started to really dread the idea of going up there. Sure, Danielle and Bryce said that we didn’t have to go swimming or kayaking in the lake, but I just knew I would be miserable staring at that beautiful glassy water.  I was almost ready to call off the trip. That was until the idea for my bikini was born!

Once I realized I could still enjoy the water even without my left breast (thank you, Waterproof Falsie), I was so excited for our trip. And really, it was everything I wanted it to be.

The first thing I did when I unlocked the door to Camp Horn on Thursday night was try on the bikini…and ohmigawd, it was perfect. Seriously, my mom is a genius. I was so so so so so so happy with how it looked that I wore it around for the next hour.

Here’s me in my awesome bikini! Can you even tell that I’m missing a boob?!

The thick straps on the bikini were very supportive so the Waterproof Falsie didn’t sag, and you couldn’t even see the pocket it sat in because my mom did such a good job with the sewing.

When I went in the hot tub, the Waterproof Falsie bubbled a little bit (tehehe) but only as much as any bikini might bubble from air build-up. And once I hung it up after getting out of the water, it only took a few hours to dry! The bead system on the Waterproof Falsie works very well. I highly recommend it for any post-mastectomy ladies who are looking for an inexpensive waterproof prosthesis!

Hot tub time!

The weekend was filled with lots of food (the boys love to barbecue), some gambling at the local Indian casino, a visit to Cover’s Apple Ranch, tons of karaoke (“A Boy Named Sue,” anyone?), a few games of beer pong, daily hot tub soaks, a rifle shoot-off, five caught fishies, and my favorite activity: kayaking!

Look at me, kayaking like a mad woman on Pine Mountain Lake!

For the first few days, the weather was rather cold and drizzly. But on Sunday the clouds broke, the sun came through, and the temperature got hot! We threw the blue kayak (named Prospero) into the truck and brought it down to the beach. My mom’s pink sit-on-top kayak was already down there. Bryce and I kayaked around the lake twice on Sunday. I spent almost an hour and half on the water.

I’m very happy to report that my arms and upper body didn’t hurt at all from the kayaking. I was concerned that the mastectomy would limit my range of motion for paddling and that it would affect my stamina. Much to my pleasant surprise, I was fine out on the water, and the next morning I had no soreness in my upper body. Yay!

All in all, the weekend was awesome. The only downside is that I have a wicked sunburn on my stomach and thighs. Naughty Rachel! I really need to start taking sun protection seriously. Does anyone have a recommendation for spray-on sunscreen that is high in SPF and non-comedogenic? I have oily and acne-prone skin, so I need to find something that won’t clog my pores. I have a good sunscreen for my face, but I want to find a product that is easy to apply for body coverage.

On a closing note, I want to take a minute to speak to any ladies out there who have lost an implant or a tissue expander after a mastectomy. I know it looks super awkward right now, being completely flat-chested on one side—but don’t let it stop you from doing what you love and being who you are. Get creative with your appearance and your solutions. If I hadn’t remembered how talented my mom is at sewing, I bet my awesome weekend swimming and kayaking would have never happened. If I hadn’t explored my options (such as visiting the kind ladies at Intimate Image who set me up with the Waterproof Falsie), I would still be cursing at the idea of putting a cotton prosthesis into a bikini top.

It sucks right now, I know. But remember that this struggle is really just a little hiccup, and you’ve got to do what you can to make it better for yourself.

Here’s what the bikini looks like from the inside, with the pocket sewn in and the prosthesis inserted.

 

Bikini top update and a time frame on my tissue expander replacement

Hey yo!

I just woke up to a beautiful morning in Southern California. After I finish this post I’m going to hop on a bike and ride along The Strand up to Manhattan Beach.

Remember a few weeks ago, when I was sitting in the hospital, bitching and moaning about how much my life sucked because I had to get my tissue expander removed? I was really, REALLY over living in Southern California at that point. I even started researching summer jobs and apartment rentals in places like Oregon, where I was convinced I would not feel any pressure to don a bikini or any kind of revealing shirt.

The view of King’s Harbor in Redondo Beach this morning from the balcony at my parents’ apartment.

Ha. Good one, Rachel. Like I could leave all of this beautiful weather and sunshine?

At the time, getting that awful tissue expander removed seemed like the end of the world. And can you blame me for feeling that way? I’m 22…I work at a fashion and beauty website…I live in Southern California. Appearance matters to me a lot, I hate to admit it. The prospect of having only one breast for an entire summer seemed AWFUL!

But it’s all about learning what works and what doesn’t. Adjustments are necessary…change isn’t all scary, I’m realizing. Okay, so I can’t get away with wearing clingy fabrics because the outline of my prosthesis will show. Well maybe that isn’t too bad…I’m finding styles that are more flattering for me. And while I used to run away screaming at the thought of wearing clothes from the women’s department instead of the junior’s department, I have to accept that I am not sixteen anymore and I have NEVER been built like a twig. Some of the clothes in the women’s department (and more importantly, in my wonderful mother’s closet!) just work so much better for me!

Which brings me to the update on my awesome bikini top (purchased from the women’s section of Target). On Tuesday, Mom and I met up for lunch after her oncology check-up at UCLA. Two miles from my office in Santa Monica is a mastectomy/breast cancer boutique called Intimate Image, so we stopped by to see what they had in terms of waterproof prostheses.

Perfect timing, because apparently they had just received a shipment of a new type of waterproof prosthesis. Its full name is the Trulife AquaFlow Triangle 630 (I think I’ll just call it “The Waterproof Falsie.”) Here are some of the fun little selling facts from the website, with notes from yours truly:

  • Molded, fast-dry spacer (…no idea what that means)
  • Breathable foam for support and structure (…ooo…support)
  • Lightweight beads do not absorb water and dry quickly (hahaha, no sponge for me!)
  • Flattering, natural profile, whether active or lying down (I like flattering)
  • Water resistant satin drawstring bag can be used to carry a wet swimsuit or other damp items (and the color of the drawstring bag is just sooo pretty)
  • Satin garment loop can be used to pin into a garment (…k…)

They only had two sizes at the Intimate Image, a 5 (equivalent to about a B cup) and a 7 (more of a C cup on me). The 7 was a tad bit too big, but since I knew I would be getting a saline fill on my right side on Thursday, it was the best option.

I also tried on a silicone breast form to do a comparison, but the AquaFlow was better for my needs. And the best part? It was less than $50, which is a steal in the mastectomy world!!!! The silicone form I tried on was over $300! It does make sense, however, since the silicone form lasts longer and so women who decide against breast reconstruction would opt for this sturdier prosthesis.

The tan object is The Waterproof Falsie; above it is the inside of my bikini top. It’s really happening!

In addition to buying The Waterproof Falsie, we also bought a little pocket. Mom is going to sew the pocket into the left side of my bikini, and then I’ll be able to insert The Waterproof Falsie when I want to go swimming. We were going to originally just sew in the prosthesis, but using the pocket instead will not sacrifice the integrity of The Falsie (I don’t want little beads falling out if a seam rips).

So now the bikini top, pocket, and my dear little Falsie are up with Mom at our vacation home in Groveland (near Yosemite). She is going to use her sewing magic, and next weekend when I’m in Groveland for Memorial Day, my bikini will be ready to go! I can’t wait to try it out and post pictures.

Moving on: on Thursday I saw the wonderful Dr. Festekjian again. He removed the stitches from my left side and did a saline fill on my right side. My right tissue expander is now at 550 ccs. I’ve decided to hold off on getting fills for a while, since my right side is now about even with both my cotton prosthesis and The Waterproof Falsie.

I confronted Dr. Festekjian bluntly about when I’ll be getting my left tissue expander replaced. When my infection was running wild and he first suggested that the tissue expander be removed, he said it would need to be out for at least two months. Of course I was shooting for two months, but at the start of Thursday’s appointment when I asked, he said “three to four months.” Bummer.

I wanted a more concrete time frame in order to plan my summer, so after he completed my fill, I pushed him for answers. He said three months was his final decision, and calculated the date based on when I got my the tissue expander removed. Three months from April 30 is July 30, which is a Monday. I can work with that. Three months is better than four!

In the coming weeks, Jeani (his assistant) and I will nail down a date for the tissue expander replacement surgery. Luckily it’s an outpatient procedure and I probably won’t have to stay in the hospital overnight. AND I won’t get a drain!!!!!! (Fingers crossed Dr. Festekjian doesn’t change his mind about that one!)

Well that’s all the update for now…The Strand is calling!

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.

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.

 

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?