Graduation and Nipples

Hi Team,

Thought I would share a funny dr. appointment I had last week.  I had my annual checkup w/ Dr. Langer at Kaiser (my breast surgeon).  She did an exam for me, asked me some questions about how I've been feeling and declared me graduated!  Yay!  That means that I will still go to see my oncologist for checkups (until I hit the 5 year mark) but I've been doing well enough that she doesn't also need to see me anymore.

Separately she was looking at my boobs, the reconstruction and said, hmmm they look great - but you need some nipples on there.  (right now they are nipple-less, only scars across the front)  "Why haven't you gotten nipples yet?"  Of course I didn't have a good answer for this question other than 'uhhh I dunno too lazy'?  But I said, yes I do think I want to get some, just to make me look somewhat a little more normal when I'm naked.  (With all the positivity that someone else will be seeing me naked).  So she brought the plastic surgeon, Dr. Simonds in the office to discuss nipples.

Both Dr. Langer and Dr. Simonds stand there to discuss nipples with me, while I am sitting on the doctors table with no shirt on.  Dr. Simonds explained that it is a procedure done in the hospital, but not under general anesthesia, just conscious sedation.  I said, 'Oh, versed is the drug they use for that right?'  To which he gave me a 'hmmm are you an addict' weird face.  Oh well :)  So then Dr. Simonds explained to me the choices - he can just cut two flaps of skin and fold them over each other to make a nipple-like protrusion and then tattoo some color on for an areola.  He doesn't seem to like this because he said the nipple flaps of skin have a tendency to go flat after a year or two, then you have to do it again and/or what is the point.  Apparently they have a new thing, where they have a piece of material they can put in there, it is actual flesh material from a pig, about the size and shape of a pellet of rabbit food.  They put that in so the skin can scar around it, and it is more sturdy to hold up over time, but still feels and looks like real flesh.  Then of course still tattoo an areola on around that.

I after a slightly awkward pause of contemplation, I asked Dr. Simonds "Hmm Pig nipples huh?" and he says, "I really do think they look better and will definitely stand up the test of time."  I said, "Well, how big are these implants?  I don't want to look like I have headlights on all the time."  Dr. Simonds says, "Well, you'll be able to cover them up with a bra, but probably not with a wet t-shirt."  At which point, Dr. Langer, who has just been sitting quietly contemplating the conversation bursts out laughing and turns bright red.  Now mind you, she is a breast specialist surgeon.  She has dealt with many many cases and deals only with breasts, all day long.  She says "You're making me blush!"  Haha success!

Anyway, I decided to go with the implants, probably won't do the surgery until later this year with scheduling, etc.  Another small step towards a more normal life/body~

Love,
Amy

The Bucket List - Another one Bites the Dust

Hi Team,

Last Tuesday night I went to visit a friend that is going through a hard time right now.  I was talking to him about what I went through, relating on a few points of difficulty and comparing war stories.  One thing that came up is how difficult it is to keep mental sanity through a really hard time.  There is no straightforward or foolproof way.  Everyone has their own approach and some (myself included at times) feel like there is no good answer.  So, we were comparing notes on techniques that worked/didn't work.  One thing I did other than keeping this blog, was to write a list of things I wanted to do when I felt well enough to do them.  It was partially that I needed something to look forward to and partially just wanting to not forget about things I really want to do once life gets easier.  It's easy to just breeze through life and not make conscious decisions about how we spend our time.  That said, a bucket list is one of those ever changing 'works in progress.'  Before I get to sharing the bucket list item I got to check off my list this week, I wanted to add that it occurred to me before making a bucket list that maybe I shouldn't.  I might have regrets if I don't get to do everything on the list before I actually do die (you never know when that will be, cancer or not).  Well, I made one anyway and discovered that in reality, every time I check something off the list, I add another thing or two (or three).  This list will never be completed.  And I decided that is a really good thing - what would you do if you did finish your bucket list?  Just be done?  'Aaand, done! I win! Now what?'  Maybe a very good thing to die (eventually) with a long bucket list full of things you have checked off and added.  

Hiking Navajo Loop at Bryce Canyon

So, one of the things I added to my bucket list a few years ago was to go see Utah red canyons.  First, I'll be honest and tell you that it started by my watching the movie 127 hours - a guy goes hiking in Utah canyons and gets stuck, has to saw his own arm off to escape.  Now, I was not trying to recreate that by any means, but the landscape depicted in that movie made me interested enough to go watch another documentary on the area and add "visit Utah canyons" to my bucket list.

This past weekend, Monika and I drove 14 hours each way (more with stops, etc) to Bryce Canyon National Park and Zion Canyon.  It was beautiful and crazy, like nothing I've ever seen before.  We camped and hiked and got to see amazing rock formations and have fun adventures through mining towns and Saturday night speedway home-made stock car races.  It was truly beautiful and worth every minute, highly recommend.  My favorite hike (actually two favorites) was the 'Navajo Loop' at Bryce, which took you from the top of the canyon down to the bottom and through some massive rock formations (only about 1.5 miles but some steep climbs).  Second favorite hike of the weekend was the Canyon Overlook Trail at Zion National Park.  It's crazy how Zion and Bryce are about an hour and a half driving away from each other but the rock and formations are so totally different and both stunning.  The Zion Canyon overlook hike was also a little over a mile, but up to the top of the Canyon where you can see a few different mountains and rock formations in the distance.  The view really looked like a green screen backdrop to a movie - surreal.  If I hadn't actually been there myself I totally would have thought my pics were photoshopped (they are not).

The world is so beautiful! - Zion Canyon Overlook

Overall, this felt like a big win - doing something that while I was at my low point, I wrote down as something to look forward to doing when I was able physically and mentally.  Life is good, and even when it's really really crappy, there are things to look forward to - even if they take a while, it's so worth it.

Love,
Amy

No News is Good News

Hi Team,

The last post I made was almost exactly 6 months ago, just a few days after my exchange surgery.  I was feeling down and irritated at a whole slew of things, mostly my once again new breasts not being as big and perky as they had been when I just had the tissue expanders.  My intention was to check back in and provide the cheery update that I had just overreacted and things were just fine, and clearly that hasn't happened yet - I'm not upset about them anymore, but still not thrilled.  From the beginning of finding out that I would have to somehow cut up my boobs, I immediately thought positively, that I was excited to be able to get brand new ones and get what I wanted.  Monika actually said to me at one point, "Amy, you didn't have to get breast cancer just to get a boob job" to which I responded "I did if I wanted to get it covered by insurance!"

In Vegas recently, surprised I
actually did have some cleavage :-D 

That said, over the last 6 months a few things about this whole process became a lot more clear in my mind.  The first thing is that it's really f-ing hard.  Breasts are highly correlated with a woman's femininity and sexuality.  They are right out there on the front of your body for everyone to see.  Nobody's body is perfect and nobody has exactly the boobs they want (with or without surgery), but generally these things develop over time and we have our awkward teenage years to get used to it.  With a mastectomy and reconstruction, you go into surgery and 4 hours later you wake up with an entirely new physical definition of your body, femininity and sexuality and it's a bit of a mental shock to have to adjust.  Sometimes they are stripped of you entirely, and you feel like everyone can tell, and you yourself are shocked and not sure how to emotionally protect yourself, your self-assurance stripped along with your breasts.  Then you have to do it a second time when you have your exchange surgery.  I really don't think it's possible to prepare yourself for what that is like.  No set of expectations would be the right ones - everybody has a different experience and different people are super happy with the outcome, or not, and outcomes vary.  I try to think about how I might have handled the situation better or differently and honestly I don't think I could have.  You make the best decision you can in the moment that you make it.  And in the grand scheme of things, I do have one of the better possible outcomes.  I am cancer free and I have reconstruction.  Some people's bodies just entirely reject implants and/or tissue expanders.  Some breast cancer survivors have been so radiated that their skin won't stretch to handle reconstruction.  I feel grateful for my outcome - but it still doesn't take away the feeling of fighting for my femininity and no being disappointed that after all the shit I had to go through, I didn't get the reward of beautiful perfect boobs.  It is what it is, and I just have to remind myself not to get too selfish.

My overall health has been great lately, for which I am incredibly thankful.  Life has been good, and I have a hard time believing it was really 2 whole years ago that I was going through chemo.  How time flies when things are good.

It's really easy to reflect on your life when things are crappy - sometimes you need to pout and it's definitely good to vent to friends or whoever, just let it out.  But when things are good, don't forget to recognize and savor the moment!  I recently have been reflecting on how happy I am right now overall.  I have an awesome job, wonderful friends and a loving supportive family.  Nobody I love has died recently and there haven't been any major catastrophes lately.  There is always that damn nagging in the back of my mind that whispers to me "enjoy it because those hard times will come back around!  This won't last forever!"  And it's true, but I really do try to take the time as much as possible, even if it's just a minute on my commute to work to stop, just be in my present moment and appreciate.  A video in closing to share with you my fun escapades lately - Took a trip to Bali with some friends and this was a monkey getting really friendly... 

Love, 

Amy   

The Good and The Tough

Hi Team,

Thought I would write a bit about my exchange surgery and the time since then.

The surgery itself was a breeze compared to my mastectomy.  I was in and out in the same day, and I knew the routine.  I made sure to ask for some anti-nausea meds and they gave me plenty of drugs for anxiety, pain, and to knock me out and not have me remember what happened.  My mom said, an hour and a half after I went in, my surgeon came looking for her.  She said "You're done already?!" he said "Nah, I just thought I'd come hang out with you."  So yes, he finished quickly, said I did great, and I'm going to be so happy with the results.  I walked out of the hospital.  I definitely have some pain and exhaustion, but nothing like the pain and exhaustion after a mastectomy.

On to my emotional state... I wanted to write a post today just to remember how I'm feeling, because I know with time this will improve, but I don't want to give the illusion that it's all a breeze.  Let's go back to the year 2002, Ten years ago.  I was a senior in college and I had beautiful, nice long hair, and I decided to do something good, and donate it to locks of love, letting them cut off 10 inches.  It felt good until I first looked in the mirror and felt horrified, ran crying to my friends and boyfriend and hid in my apartment for days.  Now in retrospect, that was very silly, the hair didn't look all that bad (hey I HAD hair!) and with a week or two it grew back to looking like a cute pixie cut.  Granted boobs don't grow back (at least not at my age), but I will adjust to how they look and feel, but today, I feel like that 21 year old sobbing and wanting to hide in my apartment.

My tissue expanders, while they were rock solid and didn't feel anything like boobs, looked big and perky and fun.  Now only 3 days later, my soft boobs look flat and droopy.  What happened?!  I got silicone implants, so they are nice and soft and boob-feeling, but the are at least a full cup size looking smaller and just lower on my chest.  I was sobbing this afternoon because I was so disappointed!  My stream of consciousness immediately chastises me for feeling disappointed about boobs - a) I'm lucky to have any and b) I am still alive, what the hell am I doing complaining about boobs.  But honestly, it's a really hard adjustment.  I feel like my body is not mine, a LOT of people don't get the fact that I don't have a say in what they look like really.  I can state an opinion but this is not an exact science, and really it's up to how my body reacts to stretching muscle and skin and holding scar tissue in place.  I can't just order them from a catalogue and make sure I have a good return policy.

Anyway, I'm sure I'm being harder on myself than I need to be, and as we all do, I have this constant push and pull of logic and emotion.  Today I'm just going to let the emotion win and be sad that I'm disappointed that they are not as perky and big as my tissue expanders were.  Eventually over time I'll let my logic influence my emotion to feel better about it.  But for now, this sucks and it's a really hard adjustment.  Again.

Love,
Amy

Surgery Update

Hey folks, this is Monika.

Amy is out of surgery. Report from mom is that doctors said everything went really well and they're hanging out in recovery now. She'll be sleeping at home tonight and will probably update you guys herself in the next couple of days when she has some energy.

From me, thanks so much to everyone who has offered so much love and support. In six weeks Amy will be able to start going back to all of her normal activities again, with more natural boobs, and knowing all this is behind her. On to better things :)

New Year, New Boobs

Hi Team,

As I prepare myself for another surgery, I am reminded that although it feels like I've started a new chapter in my life, the chapter I've written about in this blog is still very much a part of me.  'Another Surgery?' you ask,  Yes, let me explain.

Back in Sept. 2010, after I had just finished chemo, I had a bilateral mastectomy with reconstruction.  Reconstruction after a mastectomy is very different than just getting a normal boob job.  With normal breast augmentation, they will put the implant under the breast tissue, lifting it up and making it bigger.  With a mastectomy, there is no more breast tissue, and it is too exposed to just put the implant underneath your skin.  So, they put the implant under your pectoral muscle.  They can't usually put a full breast-sized implant under the pectoral muscle because there isn't room for it.  So, they put a temporary tissue expander in which they fill with a little more saline over the months, stretching out the muscle until you look like you have a regular-sized boob. Think about those 'pump it up' reebok shoes in the 80s.  This 'boob' though, is made out of an industrial grade plastic that has a hard port (where they inject more saline).  It may look normal with clothes on, but if you feel it or look at it underneath, it doesn't budge or feel a bit like a boob.  So there is another surgery after you are all done with the expansion, where they open up your original incisions and take out the temporary tissue expanders, replacing them with more realistic boob-like implants.

That's the summary, and I'm having it done this upcoming Friday.  I'll be under general anesthesia and the surgery is supposed to be 3-4 hours long, but no overnight stay in the hospital.  I'm not supposed to do anything that will get me sweaty or extend my upper body for 6 weeks afterward.

I am kind of nervous about this surgery.  Not because I'm afraid of the pain or waking up, recovery, etc.  But because I have to say that emotionally, getting over the challenge of being bald, being dumped, getting boobs cut off and having to get them slowly rebuilt over time was really challenging, and thinking about going back for another surgery brings me back to that time pretty clearly.  I was an emotional, hormonal ball of wreckage at the time, but that was a long time ago now.  It's odd because anyone that I have just met that I tell I went through cancer treatment usually immediately thinks that I am a strong confident woman and since I kicked cancer's butt, I probably have this sense of full self-confidence.  I wish I felt that way, and sometimes I do, but I feel like that is something that comes much more gradually over time.  The process of getting used to my new body, dating and talking to people about what I've been through and how my body is different, is nerve wrecking at first.  For a long time I was much more sensitive to people's reactions because I wasn't yet confident in my own skin.  Especially when going on dates, there really is no good point in conversation with a new person to bring up, 'oh yeah, I had cancer, got my boobs cut off, don't have nipples now, but you know, I survived.'  Maybe it's just in my mind, but I feel like that experience is intimidating to most people my age, they can't relate to it, and it immediately may have the reaction of admiration, but also creates distance.  

Anyway, dating aside, I have finally gotten to the point where I don't feel as self conscious about my body, I don't feel like I'm hiding anything anymore.  I've started to get more comfortable in my (new) skin, and have the attitude that 'this is me', take it or leave it.  And now I'm going to make another change, restart the adjustment and getting used to it all.

A good friend of mine made a great point though, that this is not like last time.  I have all the experiences I've gone through since then, the surgery isn't as invasive and I've rebuilt a new and happy life since then.  I know it will be fine and it's not the same, but it still brings me back to a time that was really not so happy, and makes me nervous about what will be the outcome.  You never know - as my surgeon explained to me last Wednesday, the risk is ~ if there is any bacteria on the implant when they put it in, if it gets infected they have to take it out entirely for at least 6 months (meaning no reconstruction whatsoever) and then possibly restart.  It's not a likely situation, but it's possible.  I try not to think about that since there are always the 'what ifs' but I also try not to get any expectations of what I will look like in my head until after it's been successful.  

 So anyway, this post is getting a bit long so I'll leave you with that.  I'll make sure to update everyone and post more later about life and the new year (which incidentally are going great).

Love,
Amy