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Bye Bye Boobies: Three Years Later, and the End of the Blog

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It’s the evening of Friday the 13th. Nothing particularly spooky has happened today, except perhaps my decision to officially retire this blog.

Today is the three-year anniversary of my prophylactic double mastectomy when I was 21 years old. At the time of this writing, I’m 24–almost 25. For over a year, this blog was my lifeline. It kept me sane through all of my surgeries and frustrations. Now, it’s a memento of the past…a reminder that I made it through a long and trying journey. But I love that it still helps people. Even though my mastectomy and breast reconstruction are complete, the stories I shared on this blog provide relief and comfort to women every day.

If you’re visiting for the first time, please don’t be discouraged by the fact that this blog is retired. I still want to hear from you. You can always reach me on email at rachel[at]tickingtimebombsblog.com.

So now, let me reflect on the past year, since my last update. A lot has happened…a bit of sadness, but mostly happiness:

  • I celebrated my birthday with a wine tasting adventure in Santa Barbara, California with a few girlfriends
  • My mom and I spent Mother’s Day kayaking around Lake Tenaya in Yosemite
  • I went to Greece with my girlfriends and at one point even went topless on the beach, scars and all! 
  • I spent an amazing weekend bonding with my cousins in Yosemite 
  • I started a new job working in product management and got to travel to Austin, Texas for work, where I caught up with Trisha
  • I rocked out to my favorite country music artists in Las Vegas at the new Route 91 Harvest Festival
  • I said “goodbye” to my dad, who passed away from heart issues at the age of 76
  • I celebrated the wedding of two friends from college, and wore a killer backless dress with a plunging neckline
  • I took a solo trip to Ireland, where I discovered my love of good Guinness
  • I celebrated the life of my dad with 60 friends and family members, then continued the celebration with karaoke with my nieces and nephews and cousins
  • I met an incredible guy who makes me laugh and records Jeopardy! for me on his DVR and tolerates my aversion to sushi

In the past year, the only time I’ve thought about my boobs and my mastectomy was while doing intense upper body exercises in Pilates classes, which I frequent three times a week. And even then it’s just a silly little thought about the funny movement my implants make when I flex a muscle.

It’s been three years since my mastectomy, and I have no regrets. I love my new normal, because I love my life.

I hope you’ll love yours too.

I’ve been nominated!

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This morning I woke up to a lovely email informing me that someone out there nominated me for a Grammy award Rookie of the Year award in the WEGO Health Activist Awards! The award is for “a Health Activist who came on the scene in 2012 but has inspired the entire community.” Well…my blog emerged onto the Interwebz scene in March 2012, so that part’s definitely right–and hopefully I’ve inspired you all a teensy little bit, too!

By clicking the link below and completing the very short form (you just need to enter your email), you can “endorse me” for the award and share your endorsement on Twitter or Facebook.

Click here to endorse me for the Rookie of the Year Award!

I’m not sure who nominated me, but thank you! It really did make my morning.

New blog post to come shortly, covering the shifting of my implants (ooooo–Festekjian was right after all!) and my first physical therapy session. Happy Thursday, everyone!

Happy Thanksgiving!

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Happy Thanksgiving everyone. For me, this year is filled with many reasons to be thankful, and they are all people. So here it goes–in 2012, I’m thankful for:

  • my parents, who–despite originally not supporting the idea of a prophylactic mastectomy–have been there to take care of me through everything;
  • my boyfriend Bryce, who has shown maturity far beyond that of many other 23-year-olds when dealing with this at-times very bizarre situation;
  • my doggy Madeline, for always giving me kisses when I need them;
  • the friends who are close in distance, for visiting me in the hospital and at home and for finding ways to cheer me up and keep me smiling;
  • the friends and family who are far away, for showing me their love and support even if we are separated by a highway, a country, or an ocean;
  • my coworkers, who have always made me feel like my decision was the right one and who constantly remind me to prioritize my healing;
  • my doctors and their nurses and assistants (I’m looking at you, Jeani and Maria), who take my frantic calls, texts, and emails no matter what and always make me feel like I’m in good hands;
  • and my new online community of friends, many of whom are also going through the process of recovering from a mastectomy, for keeping me sane and for literally reminding me that I’m not alone.

I’m also thankful for science, extra-strength Tylenol, and chocolate.

Now, an update on my implants: Monday’s surgery was a success, and I am now the proud owner of two 800 cc style 45 high profile silicone implants. They are 14.2 cm in width with a 6.7 cm projection. Now, what does that really mean?

At the moment, I have no idea. My body is still adjusting from surgery, and to be honest with you, my breasts look very uneven. The right one is larger and falls lower, while the left one is small and tight and sits very high on my chest.

I had a freakout when I realized this yesterday, but Dr. Festekjian assured me via email and a phone call that he expected this to happen and that I need to give it time. He said that during his surgery, he did a lot of work on my left side to remove scar tissue from my earlier infection, and that the tissue was still swollen from that. He expects the implant to fall to the level of the right side over the course of a few weeks (to maybe a few months).

I’ll try to post pictures of my implants this weekend. Right now, I’ve got to get ready to see the new Lincoln movie with my favorite Abe Lincoln lookalike, Bryce. Happy Thanksgiving!


Blog redesign

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I’m extremely pleased to present to you my blog redesign!

When I started this blog and came up with the name Ticking Time Bombs, I always had an image in mind of a bra made out of bombs. That is, after all, how I felt about my breasts: they were deadly bombs waiting to explode!

As the blog grew, I realized that I needed to develop more of a brand. Many times in my daily life I strike up a conversation with someone who ends up having a personal connection to breast cancer or genetic testing or who knows someone who does. I usually end up scribbling my blog URL down on a scrap of paper and hope that they don’t lose it!

I needed blog business cards to give to the people I met. But If I was printing business cards, I’d need a better URL; the generic WordPress URL is difficult to remember. So I purchased http://www.tickingtimebombsblog.com.

Then I realized that if I started giving out business cards, they would need to match the look of my blog. But I was not exactly proud of the look of the blog. Sure, it worked…but honestly, I threw together the banner in about fifteen minutes. It could be a lot better.

Through ifreelance.com, I hired a wonderful freelance graphic designer based in the UK. We emailed back and forth about all of my requests and ideas, and soon, a logo was born.

From that fabulous logo came my business cards, and finally, my banner. (Yes, that’s supposed to be me in the logo. Originally the illustrated girl was a lot skinnier; I had to ask my designer to throw on a few pounds!)

I’m very excited to get my blog business cards printed this weekend so I can start giving them out to people who might want to visit the blog.

Thank you all for supporting me throughout this journey with my mastectomy and reconstruction and the development of the Ticking Time Bombs blog. Please keep passing on the link to anyone who could benefit from reading my story!

The BRAT diet? No, I prefer the BITCH diet.

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I’ve been home from the hospital since Wednesday afternoon, with one Jackson-Pratt drain, two antibiotics (recently reduced to one), and no left breast or tissue expander.

Let me first say that I am the only person in history who would gain three pounds from no eating and constant diarrhea while cooped up in the hospital. After what felt like hours of hearing my father’s loud chorus of, “You’re going to lose weight in the hospital! You’re going to drop lots of pounds!” I almost started to believe him. He, in fact, does lose immense amounts of weight when he’s in the hospital. Considering my recent hospitalization was very much like his last few (intense IVs of antibiotics and barely eating), he almost had me sold.

Expecting that one silver lining from this hospital stay, I excitedly hopped on the scale on Wednesday…and NOPE. LET’S ADD ON THE POUNDS INSTEAD. MAMA NEEDS A NEW LAP BAND!

(For those of you who don’t like sarcasm, leave now.)

I am slightly depressed by this. But I am even more depressed by the fact that I can’t eat anything. I mean, if I’m going to be fat, I might as well enjoy the process of it, you know? Okay, that’s not true. I can eat everything in sight (of which there is plenty of sight.) But I am NOT because of what happens fifteen minutes after I eat. Let’s just say, what goes in, goes out really really fast because the antibiotics I am on have killed off the good bacteria in my system. Eating is not fun at all and is inconvenient unless I am basically sitting on the toilet.

My mom and dad have been pushing probiotics (apparently these have helped Dad with a similar problem) but Dr. Festekjian’s team want me to hold off on those. They want me to try the BRAT diet first: Bananas, Rice, Applesauce, and Toast.

Check out the picture that comes up on the Wikipedia page for the BRAT diet (hahaha when I first wrote this, without proofreading, I accidentally wrote “BRAT die”!):

Well that all looks disgusting. Seriously. Let’s take the most bland, ugly foods we can find and throw them together to make a cute little acronym that describes the annoying and spoiled patients who need to eat this crap!

The thing about the BRAT diet, I’m learning, is that it’s not actually limited to BRAT. Jeani said I should just try to eat this gross stuff with other stuff: like, eating a sandwich with bread…or eating rice with some chicken (not happening.) The banana-in-a-smoothie suggestion didn’t make me want to vomit, so I think I might try that.

In other news, my left breast is still missing. Dr. Karam, my very kind and caring breast surgeon, sent me a nice email about an hour ago to see how I was doing. Since I’ve had a heavy helping of the BITCH diet, I sent him a rather cheeky response that included the following lines regarding my appearance:

“On the left, I look like a nine-year-old boy who was once very, very fat but then lost a great deal of weight in a very short amount of time. On the right, I actually look normal. HA. This tissue expander breast is now what I consider normal.”

On the way to the bathroom or kitchen I almost always catch a glimpse of myself in the mirror, usually hoping that this time there is actually a boob there. Instead of a boob, however, I’ve noticed that my rib cage and stomach are now officially bigger than my chest, a fear I’ve had for many years.

I can hear Madeline playing with her squeaky ball quite viciously in the living room. I’m going to go ask her if she’d like to play with my brain instead.

 

Cellulitis 2012: Out Goes the Tissue Expander

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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.

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!

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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!