Genes, Boobies and Other Accessories

Archive for the ‘Pre Op’ Category

12 hours and counting

I have to be there by 11:30 tomorrow morning. It’s 11:45pm and I’m not sure if I’m going to sleep tonight. I just panicked when I realized I hadn’t taken the total dosage of antibiotics that my doctor told me to start today. I misread the label. I called Dad and left him a message. I then called my cousin, Christie, and she talked me off the ledge by convincing me that if I tried to take the full dose by midnight that I’d just end up in bad shape. In fact, her exact words were, “Mandy, don’t do that. You’ll have the worst squirts and you’ll be so sick tomorrow.” Needless to say, the fear of busting a stitch tomorrow kept me from overdosing on cephalex. I still think I will be fine now that we applied our vast knowledge of antibiotics. Guess it pays off to have a family full of pharmacists and nurses – and fathers that share their knowledge.

Now that the crisis is over, I’m sitting on the couch with Jessica while she plays on her phone and I’m trying to wrap up any last minute things that I need to do before I attempt to go to bed. I think I’m getting my game face on…slowly. I feel very focused and determined. I’m in the zone. I think this is a good turn of events considering that this past weekend I watched way too many YouTube videos and increased my anxiety level by a billion. I can feel my resolve setting in and this is exactly what I need right now.

I wonder what it is going to feel like tomorrow when I look down and see that I now have the chest of a 12 yr old boy. Will I feel sad? Will I panic? Am I prepared? I guess you never know how prepared you are until the event occurs. I’m sure that my coping skills are developed enough to handle this. I’ll feel less anxious once I wake up from surgery, hear that my tests are back from pathology (making this definitely preventative)…and I finally see my noobs (no boobs).

I’m going to go shower and try to get some sleep. Tomorrow is the big day. I will update the blog in a few days when I am more alert and getting around. I won’t write while I’m on pain killers…although I’m sure it would entertaining. And if I do anything trully embarrassing in pre-op tomorrow when they begin to give me meds in my IV…I can almost guarantee Jess will grab her phone and post the video somewhere very public. She missed her opportunity to do that when I had my wisdom teeth out and embarrassed the family by announcing that I was “hungry as a mofo” a million times and then sang the Chilli’s Baby Back Ribs theme song. I’m prepared for her to not miss another chance.

Thank you for your prayers and encouraging words. Please keep my parents and Johnna in your thoughts as well. 

It’s now 11 hrs and counting…

Happy (Early) Anniversary Mom and Dad

April 19, the day after my surgery, my parents will celebrate their 39th wedding anniversary. That’s right…39. The day before, I will walk into the hospital with a 92% chance of developing breast cancer and will walk out on their anniversary with less than a 3% chance.

There have been moments over the last few years where I’ve really hated being the only living child. Most of the time I’m just upset that Jake isn’t around to distract the parental units when I mess something up. It was nice being the good child for a change during those last few years of his life. His manic phases seemed to always overshadow anything I could be doing. And we were both so young. I think his manic episodes also helped to distract us from the effects of the Lyme disease. It was easier for me to look past the weight loss, limping and gray tint to his skin when he would talk to me about whatever he was so fixated on at the time – in the rapid pace and cadence that mania encouraged. It allowed us a small break from the reality of knowing a loved one was dying right in front of us.  

I watched my parents spend every minute of every day worrying and praying over my brother. As the Lyme disease continued to get worse, it consumed all of us. I watched my mother pour all of her energy into taking care of him and making sure that he was safe and comfortable. I watched my father cry in frustration because he couldn’t find the right doctors to cure him. I don’t want to ever be in the situation where I have to watch them take care of me like that. I like to think that this surgery is just as much for me as it is for them.

I keep thinking about the urgency I had in having a hysterectomy. All I could think about was how I did not want to be sick and do this to them. I couldn’t handle the thought of them burying another child. I’m grateful that I got to walk out of that surgery with no illness and no need for treatment. I have no reason to believe that this upcoming surgery will be any different. For this, I am grateful. I will alleviate the worry and burden that we have all experienced over this pesky little breast cancer thing. I will remove the constant conversations about lab work or MRIs or more biopsies. It will be nice to not have to talk about it so much.

We’ve always joked about all of the horrible historical events that have happened on April 19th and how my parents have defied the odds on a day that seems so cursed – especially when you consider all they have experienced together. For those of you that aren’t aware, April 19th is the anniversary of Columbine, the Oklahoma City bombing, the Nazi invasion of Warsaw ghetto, the day that the Branch Davidian complex burnt down, and the day that Fidel Castro resigned. (On a lighter note, for those of you that are interested, it’s also the anniversary of the premiere of The Simpsons.) I like to think that this week/this wedding anniversary, my parents will show the universe one more way they’ve defied the odds…and we’ve defied the odds as a family.

So Happy Anniversary Mom and Dad…I’m sure I’ll sleep through the 19th, so I want to say it early. I love you both and am thankful for the insight and support you’ve given me. With your encouragement and support, I’m given the gift of life once again. Johnna and I are so lucky to have you.

And now, I will live to find you a retirement home where kind nurses will change your diapers and you can eat all the applesauce you want…while Johnna and I manage your estate. Just sayin…I’ll take real good care of you. I’ve got it all planned out.

Boobie Funeral

I know this might sound weird but the last few days I’ve found myself saddened by the changes my body will go through over the next year. It’s almost been like a pre-op grieving period. All of the sudden I’m scared of that moment when I wake up from surgery and see my temporary chest. I wonder if most women experience shock when they finally see a chest that’s (in my case) considerably smaller and doesn’t resemble anything that they are used to seeing? I wonder if it’s a hard thing to get used to looking at. I’m not scared enough to reconsider or question my decision. The thought of continued worry and radiation exposure for the rest of my life isn’t appealing at all. The thought of being forced into this surgery while going through chemo doesn’t sound good either. I know that if I was told that I had a 92% chance of winning the lotto, I’d buy tickets immediately. With this kind of risk and my horribly bad luck with my lady parts, I know what I need to do. I want to be in the 3% bracket and live a life where all I need to do is eat right and exercise to control my blood sugar…and make sure my liver is functioning properly. (hehehe)

No matter how rational and well thought out this decision is…I’m still going to be “Bride of Frankenstein” for a year and the emotional part of this decision is weighing on me. Thankfully, I have the internet to help me in my quest to reduce my uncertainty and calm my nerves. Reading other blogs by previvors and survivors helps tremendously. This weekend, I ran across this really cool awareness campaign, The Scar Project. It’s basically a  protrait series of fabulous women post op and it makes our scars look beautiful and artistic and something to wear with pride. The women look so feminine and strong. It was really encouraging. It made me feel better knowing that it is possible to still be feminine even with noobs (noobs = no boobs). And when all reconstruction is over, it‘s possible to be feminine with newbs (newbs = new boobs). I’m trying to keep things in perspective. I just have to emotionally prepare myself for this transition period. I’m thankful every time I read another blog, run across another website, meet another previvor or survivor because the sense of community and “normalcy” of this process is reassuring and comforting.

I also think this grieving period is something that we all experience. Much like grieving for a loved one, grief seems to manifest itself in different ways. You have good days and bad days. You feel peaceful and tormented. I think this week is when I really get to experience this process of grieving. It’s like a week-long funeral for my boobies. Let me make this point clear – it’s not a vanity thing that I’m experiencing. It’s more of an identity thing. Over the last few years, I’ve been forced into challenging and examining my concept of what makes me a woman. I had to challenge my definition of being a woman when I realized that I would not get the option to ever be knocked up and participate in a rite of passage that’s so closely tied to female identity. Now, I’m altering and temporarily losing the other outward sign of my identity as a woman. So in some ways the cool thing about this process is that I am learning to dig deep within myself to redefine my concept of me and what makes me a woman. It’s a refinement process. And so I’ll embrace my boobie funeral this week and hope that in the end I discover a renewed since of self and a new sense of humility and grace.

Today’s To-Do List

Today I woke up to revise my list of “To-Do’s” since surgery is a week away. I’m a planner…to a fault. I know this. I embrace it. Ain’t no shame in my game. I am suddenly very aware of things that I take for granted right now that I won’t be able to do for a few weeks post op. There are certain limitations that I’ll face for a little bit like lifting my arms over my head and lifting anything over 2 lbs; which, as my good friend and breast cancer survivor Ginny says – is the equivalent of a cup of coffee. My “To-Do” list continues to grow as I look around my apartment and see things that I could do to make life easier after I get home and stop taking the pain meds. So here’s my current list of things swimming in my head right now:

  • Interview housekeeper to come biweekly – hire by Friday
  • Find someone to bribe into doing laundry the week of May 14 – Mary??
  • Move makeup in bathroom to second shelf
  • Put laptop desk thingy from IKEA together (pray it’s not as hard as the computer desk was a few years ago) and put by the couch
  • Locate and assess availability of button up shirts in closet and move the rest to the other closet
  • Wash new button up pajamas and pack bag for hospital
  • Take otter box off of iPad – iPad should lose about 2 lbs that way
  • Buy wax and wax legs and armpits Sunday night. Yes, I just realized I won’t be able to shave for at least two weeks. Might need help with this as I tend to have performance anxiety after I apply the wax strip to my skin and can’t always pull it off myself. Mary you’ve been warned!
  • Put step-stool by bed
  • Put tongs to reach stuff with in bathroom, by bed and by couch. This is an effective tool for reaching things in the kitchen; it should work well for me in other rooms too. If the T-Rex was as resourceful and brilliant as I am she would not be extinct – beat you (Jess/Steve/Mary/Michael) to the joke about my tiny ineffectual arms.
  • Need more pillows – and do they make that TV pillow anymore that you prop up on?
  • Find a new series to read and download – pronto
  • See Hunger Games before Wednesday
  • Research prosthetic boobies….hot and uncomfortable or hot and worth it?

‘Nam Flashbacks

In November of last year I had an emergency appendectomy – not to be confused with horrible gas pain, which is what I thought it was and delayed going to the ER and even boarded a plane before realizing that it was indeed not gas pain. The experience was somewhat traumatizing. I was new to Columbus. I had no idea what hospital to go to. I had to google the hospital from the parking lot of the airport and drive myself there. I was denied pain meds for a long time until I signed a waiver saying that I would take a cab home. And it was the first time in my life that I was in a medical emergency and completely alone. I know that I’ve had the fortune of living most of my life as a hospital princess. My father’s name and reputation has helped me receive top-notch care. This was my first experience in a hospital to be treated very poorly…and it was traumatic.

So today I went to the hospital for my pre-admin testing and registration. I didn’t think I was nervous until in the waiting room the most OBNOXIOUS couple sat down by me. She wouldn’t stop reading every line on her registration form OUT LOUD and then looking at me as if I knew the answers to the questions about her medical history. To top it off…her husband smacked his gum the entire time and commented on everything Regis and Kelly were doing on the tv. It took everything in me to not get up and punch him in the throat. After a few minutes I realized that I was a little on edge and maybe I was just nervous. Just a little.

It wasn’t until I went back with the nurse that I realized I was really nervous. As she asked me questions, I felt my heart racing. I found myself being overly detailed with her because I kept thinking about how in my last surgery the nurses didn’t feed me in time and my blood sugar dropped to 23 and I had totally lost my voice and couldn’t call them on the phone or communicate well when they came in the room and I didn’t have anyone there with me and they gave me the pain medicine I told them I was allergic too but because I couldn’t speak loud enough for them to hear me and they wouldn’t bring me something to write with it took a full body rash before they changed it…

When she took my blood pressure and I saw my normal 117/79 was really 138/99 – I realized that I was having a ‘Nam flashback. It was weird experiencing white coat syndrome for the first time in my life. Which really caught me off guard because I grew up in hospitals.

I wouldn’t have thought that my silly hospital experience would impact me so much. For about three months afterwards I repeatedly reminded my friends that “I almost died,” and they’d consent to whatever I was asking of them. It was nice while it lasted. At the same time, I realized that the experience was very liberating. I didn’t have my father’s reputation surrounding me. I didn’t have a rockstar surgeon that had his own dedicated wing. I couldn’t speak, even on the phone (thank God for texting). I was very sick and very much alone. And I survived it. Just like I survived my physical and pre-admission stuff. And thankfully I recognized what was going on with me and the couple in the waiting room survived sitting with me later on in the morning in the registration office…even though the douche bag guy was still smacking his gum!!!

You wanna tattoo my what?!

Once I made the decision to have the surgery, I began meeting with plastic surgeons. When you ask 5 plastic surgeons the same question, you get 7 different answers. I wanted a number of opinions so that I could compare techniques and surgical options. I was pretty convinced that I was going to work a tummy tuck into the deal one way or another. So I met with the first doctor. He was a douche. I wanted to get a consult on the reconstruction and a consult for a tummy tuck. This guy only did tummy tucks. He was referred to me by a friend. I decided that it was worth asking him what he thought about me having a mastectomy and he said it was the best thing I could do for myself. In each consult my plan was to ask the doctor “if I were your daughter, what would you recommend that I do?” So although I’m sure he is a great doc and his tummy tucks are flawless, etc. He was a douche because he had the craziest hair and he talked like a Vegas lounge singer. It was hard to take him seriously. His hair wasn’t exactly what I would call a comb over…more like a comb forward and over with a swoop on the side. It was so distracting that I eventually stopped looking at him and tried to focus on a spot on the wall behind him. I think he also fancied himself a little and I got nervous that because of my goofy grin he’d think I was flirting with him. I still can’t understand why he speaks the way he does. Seriously, its like he sings his sentences. Anyways, obviously at this point – I’d ruled him out for being a douche.

The next doctor is where I got my first exposure to pictures of a mastectomy. The pictures were informative and helpful, and confirmed the bride of frankenstein picture that I had in my head. Although, I must say (when it’s all done) it just looks like a breast reduction with perfectly round nipples. Ugh nipples. I hate that word, and over the last year I’ve said it more than I ever have in my life.  The doctor puts pictures up on the wall through a projector for me to see and as he starts out, he says he’s going to show me pictures of before, day of, week after, 30 days after, 6 months after and a year after. This is where I realize that the process really is a year a long…and when I first hear the words “tattooed nipples.” Tattooed what?! He proceeds to show me the gun they use to tattoo after all of the surgeries are good and over. I’m not grossed out or anything or upset…my shock is more like “Oh! That’s how you do that?! Really?! Can Jews do this?”

Side Note: I’ve always appreciated the art of tattooing and am probably the only person I know without a tattoo…but now that I think about it – I’m also one of the few Jews in my circle of friends. Regardless, I decide that I’m not the first Jewish woman to have breast reconstruction and take my question to the internet where I find similar questions and become more comfortable with the idea of this tattoo….possibly tattoos in general (but don’t tell anyone – cuz my friends will think I’ve lost my mind since I’ve been committed to “no tattoos” for so long).

This first conversation leads me to the realization that I am really starting a mission to search for the perfect shape and size nipples. This becomes the focus of my consultations. I start seeing boobs as accessories at some point in the consults and find myself talking about them like I would purses. I even sat down at a bff’s house and thumbed through a Suicide Girls coffee table book where most people would look at the book as really artistic punk-style soft porn, I looked at it to shop for nipples. I’m sure I took the fun out of the book but it was a good book for me to look at and I even found a girl with flesh-colored star-shaped nipples…don’t be surprised if I do this btw.

At some point when you are faced with this surgery, you go through a period of time where you emotionally detach from the feminine identity you associate with having boobs and begin to see them as nothing more than accessories. Some people have to go through this process post op because they didn’t have time to process things prior to surgery. I just happen to have delayed the surgery by about a year and a half which has given me the time to emotionally be more prepared. Although, I don’t think I’ll ever get over the weirdness of tattooed nipples…

New boobies?? Seriously?!

In 2009, I was faced with large masses on my ovaries and had a total hysterectomy. So yes, being 30 and having a hysterectomy seems pretty sucky to most people. In some ways, I’d been preparing for it all my life. I’d had a horrible history with ovarian cysts and hormonal issues. I knew I carried the BRCA2 gene* and was high risk for ovarian cancer. I basically lived in my GYN’s office since the age of 12. I really never had a year where I didn’t get to experience some threat of surgery, new medicine or therapy, some complication, etc. I’m pretty sure I have put in the hours to be a back-alley lab tech and ultrasound tech. In fact, I think I’d be pretty dang good at it because like most people with any type of chronic condition or reason to be a frequent flyer at a doctor’s office…I had to learn to be my own advocate. This particular year though, I’d had a full year of not having to do anything but show up for my annual exam and annual ultrasound. I attributed it to the fact that I’d lost a lot of weight and was healthier in general. So when my doctor came in to tell me about the need for surgery and the large masses shown in the ultrasound I was pretty shocked. I mean, I knew surgery was the only option for me at some point. I had just not seen this coming AT ALL.

So I get through surgery just fine, (By-the-way, menopause is a bitch – especially in the summertime in Arkansas) but because of the surgery and the fact that I was now 30, I had to add regular mammogram and breast MRI to my yearly routine. I had the mammogram earlier in the year but 6 months after the hysterectomy, I had my first MRI.

Now, I have spent my whole life scared to death of ovarian cancer. I mean, I had the medical history and the gene and my grandmother was 41 when she died from it. I was a ticking time-bomb. I knew the connection between ovarian and breast cancer. I obviously knew, that’s why I had to start having regular breast MRIs. It never occurred to me -ever- that I’d be at such risk for breast cancer. It also never occurred to me that I’d have my first MRI and have to immediately have a breast ultrasound because I had a spot in my left breast that they needed to “check out.” (Side note: I’m pretty sure I could be a back alley mammography tech now too – except for the fact that I’m not a sadist.)

The spot is 7mm and 3 cm below the nipple. I’m looking at the images when my doctor says, “let’s talk about our options. I can continue to monitor you like we planned, alternating mammograms and MRIs every 6 months. We might do that for the rest of your life with no issues, but that’s unlikely giving that your gene study has been updated* and you’re currently at a 92% risk for cancer. You’ve seen what it’s like to live without the threat of ovarian cancer for 6 months now. So let’s talk about a bilateral mastectomy.” My response? “New boobies?? Seriously?!”

I was in shock. I mean, with the hysterectomy and ovarian cancer risk of 94% I had spent my whole life wondering when the ax would drop and I’d be going through chemo, losing hair and sick. The 6 months leading up to the MRI was the first time in my life I got live free of that dark cloud over my head. I never thought I’d have anything ever show up ‘suspicious’ in my breasts. Never.

But the thought of new boobies?! I mean, I had weight-loss surgery in 2007. For someone that’s never breast-fed a baby, I sure look like I’ve had 8 kids. So the thought of getting a rack that doesn’t sag, where my nipples are perky and the skin doesn’t fold into my bra…WINNING!

I figure, if I have to do this…might as well be excited about new boobies.

*Note: On Aug. 6, 2012, I received notification that I am actually BRCA2 negative. Please see my post on Aug. 7 to find out more.

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