Second surgery, where I am today…and retiring this blog

Surgery #2- September 2, 2011:

Yes, it is true. I will be having a second surgery at Georgetown with Dr. Scott Spear currently scheduled for Friday, September 2, 2011. This procedure is minor. The surgery itself is only about 2 1/2 hours and I should be able to go back to work the following Tuesday. Without too many details, it really is just to fix some cosmetic issues that, over time, have started to bother me that they say they can perfect. The doctor, being as pompous as he is basically said “I told you so” at my 6-month follow up yesterday but when he asked me if I would do things differently I said probably not. When I reflected more yesterday after the appointment, there is no way I would have changed it. My recover was beautiful and I was back at work in 19 days. While I am having to have a second surgery, if I had gone with the traditional 2-step route, there would have been a second procedure which is basically what I am doing now. So, same amount of surgeries in the end.

Today:

While this is still not completely over for me, I feel fabulous overall. I know I did the right thing and I wouldn’t change a damn step in the process. For anyone considering having this surgery or one similar, hold your head high. My best advise is to stay educated on the subjects and make your own decisions. This is such a crazy choice we have to make, you never know the outcome but there is always light at the end of the tunnel.

My choice to end writing in this blog:

A lot has changed since I started this blog. I am still very open about my surgery and what is going on with me currently, but the little details here and there I want to keep to myself… Or at least keep to those that have the guts to ask me. I guess there are just some things that should be kept between myself and my husband (and maybe my family and closest of friends). So, that’s my story. If you were a reader, thank you for keeping in touch with me and following my story. I hope you learned from my experience and that it will help you in someway in the future.

Best of luck,

A

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Praying for D

D’s diagnosis:

I’m having a tough couple of days this week as I received news via Facebook that my big sister from my sorority at University of Maryland is battling triple negative breast cancer, a very aggressive form of the disease. She was diagnosed this January at the young age of 26. I was in bed when I saw the news just going through my Facebook news feed and, as you could imagine, was in complete shock when I saw the words “diagnosis” on her page. This wave of anxiety came over my entire body. I suddenly was surrounded by so many emotions: Anger that this happened to such a beautiful person, confusion on why this happened to her at such a young age, overwhelming sadness that she and her family had to undergo so much pain, and so many others but words do not adequately describe them.

I read D’s entire blog that evening. Initially, I thought I read in one of her posts that she too was BRCA positive but to my surprise, as I read further, I found out that she had tested for the BRCA mutation but was found negative (thank God!). This was somewhat surprising only because of her age and how aggressive the cancer is but she is truly blessed that she is not a carrier of BRCA as it is one less thing that she has to worry about and we can just leave it at that.

Why this is so different:

I’ve known a lot of people in my life to receive a diagnosis like this…a lot more than I should…but this diagnosis is not the same. This is completely different. D and I went to college together. We went to the bar together. We watched Sex and the City together. We talked about boys together. We knew each other before we married our husbands and before we had our careers. WE ARE THE SAME AGE. We are from the same town. We walked the same halls and sat in the same classrooms…

My husband tried to console me on Monday night and in between my crying he said “this is why you had the surgery you had.” Now naturally someone like myself with my situation would certainly flash forward and think about what I would do if it were me. But I wasn’t really thinking about that. Reading D’s so eloquently written posts, with her amazing and courageous spirit with such detail made me realize how nominal what I went through was on the scale of things. I’ve been having a pitty party over her recently thinking about how the surgery went and such and reading what D has been going through just put things in such a different perspective for me. I thought what I went through something hard and trying and rough. Ha! Just the thought of what D is continuing to go through each and every day brings tears to my eyes and she does it with such grace and an aire about her!

Please pray  for D:

D, if you are reading this, you truly are amazing, an inspiration and I thank you from the bottom of my heart for opening up and sharing your story. Your story will help so many women find their voice and understanding of this disease and it only takes one…

To all other readers out there, I ask you to please pray for my friend and her family as she continues her own personal fight against breast cancer.

XOXO
Allison

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Playing peek-a-boo

Feeling a little ‘famous’ today…

Oddly enough, I ran into one of my plastic surgeons today at Georgetown. I do frequent Georgetown often for work so I shouldn’t find it surprising to run in to one of them but it was quite amusing when I saw Dr. Steven Rottman and one of the new residents (who I then had to explain how I knew Dr. Rottman) in the hall on my way to floor 7. I think I may have mentioned Dr. Rottman in a post or two before but her is Dr. Spear’s lead fellow and was VERY involved in my surgery. He is also very knowledgeable on BRCA in general and I would like to think that I have something to do with that but due to the clientle that he sees at Georgetown, it probably has a lot less to do with me a lot more to do with that but…you never know. Each doctor probably learns a little more from each patient. I have been very impressed with Dr. Rottman, as have my friends who have worked with him and with his overall bedside manner and ya’ll know how I feel about Spear.

Now, to my surprise, Dr. Rottman mentioned my blog! I have NEVER mentioned my blog to him or to Dr. Spear but I guess a patient of his had mentioned it to him…or two, which I find to be so humbling and just so amazing. I can’t say this enough: I LOVE that people actually enjoy reading what I have to say and want me to write more! I always wonder if I write too much and that’s probably why I haven’t updated lately. So…I will try and write a little more and hopefully you all will CONTINUE to find it useful.

PEEK-A-BOO!  

The title of this blog is A Walk in My Shoes: Previvorship and Laughing in the Meantime. So this section of this post will focus on the laughing part. Now, look to the right ———>>>>>>> Yes, I now own these and if you have a nipple-sparing PBM…I suggest you buy a couple pairs yourself. (Not sure if its this brand or not, but, I sure as hell own them to avoid as many peek-a-boo shows as possible). However, imagine wearing a shirt and instead of showing off your nipples, or maybe a bra line, you now see a flower showing through???? Story of my life.

New fear: the stares are in my head

I am now TERRIFIED that everyone is staring at my tits!!!! I was never worried about this before but as a woman I think I needed to be worried about something right? I didn’t worry about this in the beginning and I fell in love with the fact that I didn’t need a bra, and sometimes I don’t need to wear these funny things, but sometimes you do and other times you can do the outline of the damn FLOWER!!!! Now, that is just NOT acceptable. A DAMN FLOWER!!!!! I could just imaging being in a store and having a little kid yell to his mom, “Mommy, why does that woman have a flower on her boobies?” Oh my god, I would die. Just die.

Kennedy Center escapade

I was very fortunate to win 2 free tickets to the opera at the Kennedy Center recently so my husband and I went and I wore a nice little outfit and decided…no pedals. Now, the Kennedy Center has A LOT of mirrors. As we were walking around I glanced in the mirror, did a double take and just shrieked at my husband…about my nipples!!!! I yelled at him for letting me out of the house and here was his reply:

“Allison, you are not Jennifer Aniston. You are fine….relax.”

Ahhhhh, I love how my husband puts things into perspective. Obviously my boobs/tits are NOT like Jennifer Aniston LOL. I kept saying, “what the hell does THAT MEAN?!” (when I knew exactly what it meant but it was more dramatic and comical than anything else…and I had some champagne in me). So amusing and such a good laugh.

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Beautiful Jayna: How quickly things change and how fragile life is

This particular blog entry is going to be a little different from all the rest, due to the circumstances that occured this past week.

For those of you in the DC metro area, this may be a repeat of some sorts but for those of you who are not locals to my area, we had a tragedy occur last Friday that really affected so many of us. Last Friday evening, two young women (30 and 27) were both sexually assaulted and one murdered inside the Bethesda Lululemon store. It appears that it was a “random” act and the 30 year old who was murdered happened to be a friend of mine- a fellow graduate student at Johns Hopkins. The sheer brutality of these events and the randomness of the whole thing has left so many of us in such shock…such disarray.

I questioned whether to blog about this but I have spent countless hours google-ing dear Jayna to try and make sense of this all; reading so many articles to try and piece this all together. While it may not be the same, I decided that it is still appropriate.

Losing someone is never acceptable or understandable

I don’t know if Death is ever really acceptable. One might argue that if you are 80+ years old and die a peaceful death in your sleep than maybe…just maybe THEN it would be acceptable or at least understandable. But a young person? Someone who had their whole life a head of them? That is not forgiveable and their life is not forgetable. Not matter how they die…whether it be a death by cancer or some other horrible, unspeakable act that took their life. Typically, BRCA takes too many young people away. Cancer in general takes too many lives. Now, maybe I live a priviledged life and maybe violence takes too many young people too…but not in my world…or at least it shouldn’t.

To Jayna, her family and her loved ones

I feel so blessed to have met Jayna and have been touched by both her grace and her spirit. May you all find peace and stength in her memory.

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When to keep my mouth shut

Censoring my BRCA world (or the need to learn how to)

It has become very apparent that I have become somewhat numb to the discussion of my boobs. This is generally not dinner talk conversation but for me…it just roles of the tip of my tongue. I guess it comes with the territory; for the last several years or so I have surrounded myself around knowledgeable people on the subject of BRCA and even showing off ones “foobs” is just no big deal so why would talking about it (or blogging about it) be different?

Baring all:

Yes, I have shown off my new friends to almost all of my female friends who have asked to see them. (sorry boys, my husband would disapprove). Actually, in the BRCA community its pretty customary for someone who is BRCA+ to show someone else the result of their surgery and at conferences there are often rooms where people “show-off” their results. It allows other women to see what such a surgery will look like, what the scars look like….how things progress etc. I have even offered this to my non-BRCA friends….(who have looked at me a little crazy and I know they are thinking, “seriously, you want to show me your boob?” but they all want to see them lol, =) One of my dear friends told me they did look like the cupcakes my husband gave to me prior to surgery which I thought was hysterical….so….in terms of censoring this BRCA world from myself and from everyone else, I have done a poor job.

Finding a boundary:

Today I touched base with a prior colleague of mine who was not aware of the surgery but was aware of my BRCA status. I told them about the surgery and the big question came up:

Do you feel different

Oh God this could have gone in so many different directions but I got off of this call feeling so embarrassed. I have a blog for God sakes. I am more open about my BRCA status than almost anyone I know but when I was asked, “do I feel different” I said so many different things. So, why not blog about since I am already embarrassed about it for some odd reason right?

Yes, I feel different

The big question.

Physically, I do feel different. Things are shaped differently, they feel differently. They LOOK differently, and  clothes even FIT differently. Here’s a BAD anecdote (but I will use it anyways: it’s like getting a new haircut. It takes getting use to but eventually, you just get use to it. That’s where I am with the physical. But mentally, I’m just less stressed. I have SO much less to worry about and weights are lifted. Now, I wasn’t much of a worrier before but more of a pragmatist so this all just made sense to me.

And now, my life can just keep moving along…

And hopefully, as time moves forward, I will learn to censor who I tell what information to. If not for me, for the sake of the person on the other end of the phone. =)

 

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I totally thought my boob fell out

 

 

 

 

 

This journey’s almost over

I haven’t wanted to write but its been just over three weeks so it seems like the best time to write my PART 2 that I promised.

I have spoken to so many of you about those days following my return home that it seems almost redundant to go back and discuss it now. I first want to say that I went back to work on Monday and how amazing it feels to have my life back to somewhat of a normal stature. I don’t think I have ever been so excited to go back to work but going back meant that I was back to myself again…and that I conquered. It was a big step and it was closure for not only me but for my husband who was my rock during all of this.

 

Day 2-5: Hell and back….and thinking my boob fell out didn’t help

Don’t be scared if you read this and are planning on having this surgery in the near future. I don’t write it to scare you and I apologize tremendously if it does…but day 2 through 5 were absolute hell for me. For some reason, I just could not get comfortable when I was released from the hospital. My pain level was never that bad around my chest, which is pretty amazing, but my back hurt like nothing else. Actually, on day 2 or 3 if you even touched my back I would tear up because it felt so good…almost orgasmic.

On day 4 my husband was rubbing my back (because again…all I wanted was for someone to rub my back) and I felt something actually pop. I started to cry and made my husband check everywhere on my body because I thought one of my new boobs FELL OUT, or possibly one of my drains. It turns out he popped of muscle and my left arm started to move better. So that was a plus.

Things were pretty bad day 2-5 also just for more mental reasons. I honestly did not mentally prepare myself for this surgery because I didn’t want to. This probably sounds really dumb to you but I didn’t want to spend time reading blogs and literature and scaring myself shitless on all the things I WOULDN’T be able to do after surgery. What was the point in that? No matter what, I was having the surgery so it didn’t matter all the things I couldn’t do. But then again, being an adult and having to have your husband pick you up in bed because you physically cannot pick up yourself is pretty mortifying…and that’s not event he half of it…so mentally, I was pretty much a wreck.

 

Day 6 & 7; I’m not shy to say I may be a little vain

The afternoon of day 5 I got two of my four my drains taken out which was somewhat freeing so day 6 and 7 I was like a new person. Chad learned how to do my hair. (He’s amazing, I know). I walked around the mall for a bit, stopped taking the pain pills, just took the muscle relaxers, and put makeup on! On day 7 I went back for another follow up and my last set of drains were out and I WAS FREE!!!! The drains really weren’t that bad but once they were out I wanted to put on real clothes and I made Chad take me shopping for a new sweater dress that I thought would be somewhat easy to put on. It’s funny how new clothes and some makeup made me feel like I was a whole new women….not the boobs…the makeup and the clothes. I remember saying to Chad on day 6 or day 7:

“I look so good I could go to work tomorrow!”

And he said to me:

“you may be able to walk IN to work, but you could not put your bag in the car, drive to work, or get your bag out of the car…so why do we just take it one day at a time.”

So maybe….just maybe I’m a little vain, but a girl can’t help what makes her feel good…or like a woman for that matter.

What everyone wants to know: the results

So, I still have small boobs. My plastic surgeon under estimated how much breast tissue the breast surgeon was going to actually take out so I gained exactly .2 ounces which is 1/8 a pound….which is nothing. BUT, they feel a little bigger because they are up in my face or as if I am wearing a nice Victoria Secret bra all the time. Chad seems to think I will opt for a revision surgery in 5 years or so. I’m pretty content with them (even thought I think its funny my surgeon thought I was smaller than I was). I am very blessed they are symmetrical and so far, the surgeon hasn’t suggested any revision, so it’s looking like just the one surgery. =)

As for scaring, I can’t even tell so why Dr. Spear pissed me off on the day of surgery, he and Willey are the best around if you ask me…and they know there stuff. If you saw them, you would barely be able to notice. So again, I am very lucky I was a candidate for the surgery I had.

 

Day by day: Where I am now, closing the BRCA door and moving on 

I have several friends who are about to face this surgery in the next couple of weeks and months ahead and all I can say is there is another, much brighter side of things. I wish I could say something prolific…something that would make you so comfortable that you would know what you are doing is right. All I can say is that I feel more than fabulous at this moment in my life.

I had coffee with a friend of mine the other evening that is still contemplating what type of surgery she is going to go with but she is hoping to have her decision made in the next couple of weeks. She asked me if I felt different or if I felt like I could at least close the door and move on with my life post this surgery. I don’t know if I every really answered her question but if you are reading this now, here goes: I don’t really feel different…I still feel like myself which is a good thing because I didn’t want this surgery to change me. This is probably very cliché but I do feel a sense of pride in myself because I know my mother would be proud of me and for that, I am empowered. We discussed how no one at our age should have to go through something like this…I know I can tackle anything. So world, bring it on.

I also feel VERY at peace.  I have known my BRCA status for over three years now and the last year especially has been BRCA this, and BRCA that. It weighs on your soul and while hereditary breast and ovarian cancer will always be near and dear to my heart, it DOES NOT DEFINE ME. I am young. I have a career. I have a husband and hopefully we will have children one day. Now that this is over I feel like I can move forward with my life without the fear of cancer constantly lingering in my mind. While my BRCA journey is not over, it is for now and this door is shut for now.

 

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“If I see my husband, my heart will be fine”

It has been exactly 15 days since my surgery and I can’t believe what has happened in such a short period of time. I cannot believe what is finally behind me and that I have very little recovery left in front of me. In just 4 short days I will be headed back to work as planned and I have never been so excited to get my life back to “normal”. I am so fortunate that everything went the way I wanted it to…the way I needed it to and that my recovery has, overall, been a quick one.

This post will have to be broken down into two separate parts, mainly for purposes of length: (1) the surgery and (2) a post surgery update with reflection

The Big Day: Wednesday, December 15th, 2010

I slept better than expected the night before surgery but, as I expected, we were early to Georgetown the morning of surgery. They tell you to be there 2 hours early and I sat in the waiting room for over thirty minutes bored out of my mind. Thank God my husband taught me how to stream Netflix shows from the ipad so I took that over for awhile before they took me back and had me dress in the godly untrendy hospital gown. (one of these days you would think some company would come in and make a newer, hipper pattern for the modern woman rather than the 60s pattern that I had to suffer and wear. Just kidding…but maybe a new business op?)

I learned how to stream shows on Netflix and this entertained me prior to surgery. I was also really cold and had about 100 warm blankets on me. Not bad for no make-up, right?

The first person who I saw was Ann, my neighbor who was my nurse on the floor. I had actually met her during my pre op appointment and we talked about her goldendoodle which calmed my nerves. Chad and I are going to be getting a goldendoodle in the Spring and talking about anything other than the surgery helped. The second person I saw was a woman about some studies I was participating in. I had to fill out a bunch of questionnaires etc. Next was the breast navigator. Still not sure what her role was but she handed Chad some pamphlets and gave me more warm blankets. Basically, she wanted to make sure I was comfortable.

Then I met with some of the anesthesia team…ahhhh the hell began. So, Georgetown is a teaching hospital and I’m all for learning but not when you are the test subject. This young guy comes in to start my IV (in my right hand) and he literally starts digging. I looked at Chad and just made faces as this guys literally digs in my hand and I see this needle go around and around and around. My plastic surgeon comes in at this time and says “are we ready yet?” and you could tell even he was annoyed. I actually felt bad for the guy because it is really embarrassing to have trouble starting an IV and now there was a lot more pressure. So, we switch to my left arm. He didn’t have to dig (as hard) and he FINALLY got it. Whohooo!!!!!!!!!!!!!!!! Then, I had to pee. Awesome.

So, eventually my breast and plastic surgeon both came in and drew on me. That was fun. I vaguely remember my plastic surgeon telling my breast surgeon she didn’t need to cut some tissue out of an area near my armpit and her disagreeing so he drew question marks on me, literally. Chad thought it was hysterical. If you can’t tell, the mood was very light in my little curtain closed-off room.  If there wasn’t someone visiting me, I was watching an episode of Weeds on Netflix so at least I was content and my mind was off of things.

The drama begins:

About 30 minutes before surgery, the plastic surgeon came in asked me why I wanted to do the one-step so badly. This is 30 minutes before I am supposed to have the damn surgery and I am already all marked up! I didn’t even defend my position and just said:

“This is why I came to you. Otherwise I would have gone to New York or even Chicago.”

So, at this point I am mad…livid actually. He leaves and I said some words I will leave off of this blog to my husband and then my doctor comes back, in sits down next to me and says “there is still the matter of size.” I just blurted out 375 and we were done with it. I almost said the 400….I almost had the balls to go with the bigger size (and Chad said he secretly wanted me to) but I just wanted to sound so confident…so fuck it. 375 it was.

So, he left and said he’d see me in recovery and I broke down, well, not exactly but I got extremely emotional. The anesthesia team came back in and I asked if I could have a moment alone with my husband before I went back. I don’t even know what I said to Chad. I just remember tears and I love you’s…

Then they came back in and had me look over what was suppose to be one last glance of forms that I had pre-signed……………….and I just about had it! Long story short there was a changed form/addition to a form I signed from plastics that said I was having an expander surgery or implant surgery. While this may seem minor to you, I was NOT having the expander surgery unless something went wrong and they couldn’t get the implants in immediately. I literally flipped. We had nurses flying in the room, plastics back in, the entire anesthesia team…I refused to go back to the surgical room without the document changed. (I mean, there was like 3 different color inks on the form…you could tell the form was modified).  Anyways, there was a WONDERFUL resident who I will write a lovely thank you note to, and Ann of course, who were extremely helpful during this whole thing and we modified the document, initialed and signed it. Now, it was really time to go.

I said my goodbyes to Chad and walked myself back to the room where they were going to perform my surgery. They lowered the surgical table that I would lay on for the next 7 ½ hours and I asked them to take good care of me.  Then I was out.

Well, it certainly wasn't as pretty as this in the hospital but I am sure it tasted good...to Chad. I didn't even know he was making them until after the fact. (I do remember seeing a package of olives in the bathroom and asking where they came from)

Bring on the drugs & martini’s- evening of December 15th:

The surgery was not supposed to take that long…they just took there time and continuously updated my husband.  (I’d rather they take their time and get it right than worry about the clock and need a revision surgery). I woke up in recovery asking for Chad (surprise, surprise)….but they wouldn’t let him come back and see me for what seemed like forever. The nurse told me something about my heart and that my breathing wasn’t right so he couldn’t see me yet. I remember telling her:

“If I see my husband, my heart will be fine. If I see my husband, my heart will be fine. If I see my husband, I PROMISE, my heart will be fine.”

I said this maybe a zillion times and the nurse finally told me that I would basically scare my husband if he saw me at that point and we couldn’t have that. So, I calmed down a bit and when I saw him, finally, I remember thinking that I was right…that all I needed was my husband to make my heart alright (or maybe he didn’t come back to the recovery room until my breathing was normalized…but I’m going to be a little romantic and say it was Chad who made things right in the world).

It also didn’t help that I woke up in recovery feeling paralyzed on my left side so I was really scared. I guess I am lucky I didn’t wake up that immobile with both arms…maybe some people do. But I literally woke up with movement on my right side and the inability to do pretty much nothing on my left.  They actually had concerns I might have a blood clot on my left side but soon ruled that out. Then they thought it might be nerve damage. They ruled that out and decided it was from the positioning of the surgery and also because that was the arm the IV was in, however, time will only tell if it is actually nerve damage. I was in a car accident when I was 18 and snapped my left clavicle and through physical therapy we will be able to determine if there is nerve damage. Maybe that is why they didn’t let Chad come back and see me…

The next 24 hours were really rocky for me in terms of memory. I was moved to a private room, which was more like a closet. In terms of pain- I was on really good meds (probably why I don’t remember much). I eventually was switched to Dilaudid for pain because morphine just couldn’t kick it and moved from Valium to Flexeril for muscle spasms because I didn’t like the way the Valium made me feel.  They had a lot of concerns due to the left side of my arm but couldn’t get over how good my right side was. I could lift my arm if someone asked me to…My right side was night and day from my left side… it still is actually.

I did have some visitors in the hospital…but if you ask me how long they stayed, or when they came, I really have no idea, as my concept of time is off. My friend A came by, mainly for Chad actually. She had seen all the FB updates, lives near the hospital, and knew things were not going as planned so she brought him a bottle of Kettle One and ever-illusive blue cheese olives. She was also able to see me for a moment (and brought me a rose bush xoxo). She said I told her my pain level was a 2 (maybe I was trying to sound courageous? Lol). Sometime after she left I told someone my pain level was “off the pain chart. “ That’s when they switched me to Dilaudid. Whoever was there for that, I apologize.  Chad tells me he was fine that night. It helped that he mixed himself a couple martini’s in the hospitals foam cups that are normally used for ice chips…that certainly helped him sleep in the room’s recliner that night.

My sister was also drove in and actually made it to the hospital from North Carolina and kept Chad company for the better half of the surgery so he wasn’t completely by himself. Our friends R and L stopped in as they were headed on an international trip the day I was going home from the hospital so they would not be able to see me when I was finally home. My father was unfortunately unable to visit me at the hospital as his body is immune-compromised from the chemotherapy he is currently going through but he was the first person Chad updated when he received information. To be honest though, I didn’t want to see many people. I was more focused on making sure I did fall on the way to the bathroom.

That first night was really rough. I will leave the details out but when your husband has to physically put pain pills and straw for water in your mouth because you physically cannot hold a cup it takes a toll on your mentally ability…let alone help you go to the bathroom. To say the least, Chad really enjoyed his martini that night and I enjoyed any sleep that I got.

And it’s time to go home- December 16, 2010

I was released from the hospital the day after surgery. I was actually given the option to stay one more night and I should have taken it but Chad wanted to get me home. We had no idea what we were in for when we got home. My sister followed our car to help Chad get me in the house…and all of our stuff. The next 4 days were somewhat unexpected as I did not mentally prepare myself for the type of pain and angst but it was uphill after day 5 and I am thankful those days are behind us.

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