Booby Trap

Before I jump into this blog entry, let me update you on the hair color situation.  I spoke with a few survivors and they all told me that they held off on coloring their hair for awhile for fear that it would turn out green.  Remember I mentioned that chemo re-growth hair can take dye strangely? Well, I certainly don’t want to make matters worse on my head, so I cancelled my appointment and will wait it out. Who knows, maybe it’ll start to come in darker after chemo is done. I’m done trying to guess what’s going to happen to me at this point — I’m just along for the ride and trying to navigate the bumps as best I can!

On to the actual blog post…

I met with my plastic surgeon on Monday.  He didn’t fill my expanders any further.  In fact, we are officially done filling them. Not because either one of us is completely satisfied with the size of my new boobs. But because filling them will only expand the tops of them where my tissue is getting thin. I used to be a big C/small D, now I’d guess I’m a B, maybe even a small B.  All in all, I’m generally happy with the where we are. At least they are relatively symmetrical and most of my surgical scars are hidden.

We spent the entire appointment discussing the type of permanent implant that I’ll get once I’m done with chemo.  He showed me three different “gummy bear” implants.  Gummy Bear implants are silicone-filled and are all the rage now because if they get punctured, nothing will leak. Their consistency is that of a gummy bear, hence the name 🙂

OK, moving on! One was a generation 4 model and was very squishy — I loved it.  It felt really natural (not that I really remember what real boobs feel like anymore). Gen 4 is the type of implant they use for breast augmentation.  They can use it for reconstruction, but it can be tricky because we don’t have much tissue or any fat to really hold the thing in place.  According to my doctor, the aesthetic of this squishy model can end up being far from desirable for recon patients.  Some of the draw backs for mastectomy patients are (1) you can have permanent rippling (usually around the edges of your boob) if your tissue is too thin (b/c this gummy has no structure on its own — it’s just a bag of fluid — so if your own body doesn’t hold it in place with a thick enough layer of tissue/muscle, you will be able to see the ripples in the bag), (2) it can look like a tennis ball sticking out from your chest (again, this gummy has no shape to it, it’s just round) and (3) if your tissue is weak, this gummy can spread out under your armpit pretty far, which really bothers some women.

The other two were generation 5.  Gen 5 are FDA approved as part of a study.  I guess the studies are based on the size of implant you’ll get. The size that I will need, just closed it’s latest study.  My doctor thinks that they’ll open a new one by the time of my swap out surgery (late June) and if they don’t, he said we have to push my surgery and I live with my expanders for awhile longer. FML.

Both of the Gen 5 models are tear-drop shaped. Which is good for mastectomy patients because it allows for a “natural” look when we don’t have any fat and little tissue.  Because they are shaped, they are less likely to ripple (ripple-free is still not a guarantee with these puppies, it’s just less likely because they are stiffer and more structured). Some drawbacks are that the Gen 5 won’t move at all and they’ll remain fairly firm to the touch. I mean, yes sure you can grab and squeeze them and they’ll move a bit and be smooshy. But they will still be pretty hard. Also, the Gen 5 are pretty thick, so it’s hard for your body to transmit heat through them. So most likely, my foobs (fake boobs) will be cool to the touch.  This strikes me as really odd and something that will really bother me. But, according to doctor Hong, this is very common with post-mastectomy patients and is hard to avoid — no matter which implant you pick.  I suppose there is a chance that my tissue and skin will do a fab job and this won’t happen to me.  Glass half full, right?!! Also, right now, I have a decent amount of sensation/feeling left in my chest. I’m not sure I’ll retain that after my swap-out — which is sad to me.

So, at the end of the day it sounds like my permanent implants are going to be a lot like my expanders — which doesn’t make me jump for joy that much.  The one thing that will be different and that I’m psyched for is the hard metal disc at the top of my foobs will be gone — so the perm implant has to be softer in that respect!  Dr. Hong and I talked about how some patients are actually sad after their swap out b/c they liked the look of their expanders more than then the perm implant. I’m betting he told me this story to help me set realistic expectations for what’s to come. Oy.

End of day: I trust Dr. Hong implicitly. He did a phenomenal job with my mastectomy scars and he continues to keep my best interests at heart (even when I don’t because vanity gets in my way). So, we will go with the Gen 5. He said he’ll do some minor nips and tucks that I’ll be happy with. For example, he is going to lipo that fat bit of skin right under my armpit. YES! Haha! No, in all seriousness, that part of my body was changed for ever after the mastectomy and it’s huge and bulgy now. I suspect it had something to do with pulling my pectoral muscles over and down to make my new boobs, but I’m no expert. So I’m glad he talked to me about the small little things he’ll be able to do to help me feel better about the final outcome.

Here are some photos of all the implants. The first pic is of all three implants. From left to right is the Gen 4, small Gen 5 and then big Gen 5. I’ll likely need the big Gen 5, but Dr. Hong won’t know until I’m on the table.  It will depend on scar tissue, how big a cavity the expanders made, how thin my tissue is and all sorts of other doctorly things. Oh the things I’ve learned in the past 7 months!

Inspiration Central

As I’ve mentioned countless times before, all of your messages — via in person, snail mail, phone, text, Facebook, IM etc, are doing wonders at keeping our spirits up! Thank you from the bottom of my heart — your notes fill me up and keep me going. Please keep ’em coming — it truly is my fuel.

If I have to be totally honest with you — you all get see the best side of me. I only sit down to blog when I’m feeling well, good and happy. I obviously have my shitty days where I’m in a lot of pain that is indescribable unless you’ve been there. So, I don’t want anyone out there to think cancer is a breeze. Nah, I just blog when all is good and try to keep it positive, because having a bad attitude won’t get me anywhere (though Paul has seen plenty of my bad; nee, sad, hurt, exasperated side late, late at night — those are the witching hours for me. Things get really tough and my body gets really tight overnight — which is no fun at all).

So I have two fun stories for you today, the first is from PT and the second is a story from a colleague and friend.

The first story took place at PT today.  I met a woman who was lucky enough to dodge not only the chemo bullet but also the Tamoxofin bullet (WTF? lucky duck!). I found myself feeling a little bit angry toward her (in a sort of — ‘you didn’t really have cancer then lady’ sort of way. How fucked up is that, I ask you?) — then I quickly got myself under control!

She said a few things that made me really, really proud. When we started talking she asked how far along I was. I replied “I’m 4 weeks post op and just had my second spacer fill yesterday.”  Then I was ushered off to start doing weight lifting (which is a HUGE graduation up from resistance bands, BTW — they already moved me to 2 pound weights! yippie!) OK, so back to the story, when asked if I could lie on my stomach to work with the weights, I said “No way — I can barely lie on my side with these spacers, no way can I be on my stomach.”

My new friend overheard this conversation and interjected, “I hate to tell you, but it will be that way the entire time you have spacers in.” Little did I know that she’d already had her permanent implants put in and didn’t have to suffer through chemo with spacers in the entire time — like I will have to — we are talking 4 to 6 months, thanks for rubbing it in lady! So, again, I got a little bit mad at her when I found all this information out. But, compassion kicked in very quickly because she is having some complications with her permanent implants which cannot be fun.

Again, I digress, sorry. OK, point of the story was — a few minutes later, she looked at me and said:

“Wait — you are only 4 weeks post op of a double mastectomy?”

“Yes.”

“Holy crap — I rented a barca lounger (sp? you would think someone who grew up in Buffalo would know how to spell barca lounger, but amazingly, I do not!) and lived in that thing for literally months after my surgery. I cannot believe all that you are able to do so quickly and only 4 weeks out, wow.”

YAY ANDREA! And, hate to admit it, YAY mom and dad and Paul for pushing me in those early days (I was very skeptical of them when they made me go for a daily walk, I am not going to lie to you!). YAY PAMF for telling me to get my ass into PT two weeks post-op — not every practice encourages that. And, last but not least, YAY Dr. Hong for also pushing me and assuring me that I can’t possibly break anything — so it was OK to be as active as humanly possible!

The inspiration/revelation point here for me is that I think I really am doing well! Despite the pain and constant ache-y reminders that I have cancer — I think I just may come out of this after all! YIPPY!

PS — I got a picture with Dr. Hong and my PT gang to share with you all! I’ll attach them at the very bottom of this post.

The second story comes from a colleague and friend, Josh Roberts. Josh and I both work for Stella & Dot Home Office. He works in the UK and is essentially my counterpart across the pond (though he wears many more hats than I do!). So we worked fairly closely before I went out on leave.  Greatest thing about Josh is that I told him I did a semester abroad in London and that I fell in love with Digestive Biscuits during that time — so after that, he’d always send me and my team some DB’s.  He’d either do it in person when he came to the US for a work trip or force others who went to the UK from the San Bruno Home Office to bring them home to us (lol) — he even got our SVP of Ops to ferry us some biscuits and gummies! hahahaha! Awesome! Thank you Josh & Tom!

A week or so ago I got the following Facebook message and picture (see pics below) from Josh and it literally brought me to tears. I asked his permission to re-print it on my blog and he said yes. So here goes:

Hey Andrea,

How are you doing? I’ve been thinking of you… and reading your awesome blog. So glad that you’re making good progress and they managed to catch it early.

I’m currently in Cozumel, Mexico ready to race Ironman Cozumel tomorrow. In case you didn’t know – an Ironman race consists of a 2.4 mile swim, 112 mile bike, and a 26.2 mile run (yeah, crazy I know)… I wanted to share one of my race tactics with you since you feature in it…

The 26.2 marathon at the end is always where I need to dig deep and think of some positive and happy thoughts – and this race I decided to write down a few things that will make me smile no matter how painful the run feels, and stick them to my energy gels which I will have on my fuel belt, taking one every 25 mins for the 3.5-4 hrs that I will be running.

I think I’m going to save yours until mile 18 – which is always a tough point.

Keep kicking cancer’s ass and get better soon! Should be in San Bruno early 2013, so we should catch up!

Josh

I mean? For real? Are there any words after a message like that? And that is only ONE example of the amazingly generous, kind and loving things people have reached out and said to me.  If you would like to read about Josh’s Ironman experience, check out his blog write-up at: http://www.triathloneurope.com/index.php/eng/Blog/Josh-Roberts/Ironman-Cozumel-2012

Also, I’ve included below pictures of Dr. Hong and I, the PT gang and I and Josh’s energy gel pack. Enjoy peeps! I don’t know why some of the pics are HUGE and others aren’t — I’ll have to talk to husband about that and get the WordPress team on it stat! lol!

Josh's Energy Gel

Josh’s Energy Gel

Dr. Hong!!!!

Dr. Hong!!!!

PT Gang!

PT Gang!

Picture Post!

Thought you might enjoy some pics from the past week:

The real deal!

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Vicodin makes me pretty!

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Still have my appetite!

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Ready to go home

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A girl and her dog

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Still eating — but this time at home!

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I’m Baaaaaack!

Hello Blogosphere! I’m back! Thanks to Paul for posting on my behalf during surgery. He did a great job, didn’t he? Before I really get into this post I want to send a huge thank you to our WordPress family.  The night we got home, they filled our fridge from Whole Foods and then they ordered us dinner for the next three nights. I’ve never seen so much food in my life. It was wonderful to have so many healthy, clean foods to choose from during those first, crucial days home. Thank you Automattic!

So much to report, I have no idea where to start.  Let me back up to the morning of surgery.  As scared as I was for surgery, I could tell my family and Paul were even more scared. We checked into the Surgical Center (I got a private room with an outside patio — sweet!) and things got underway really quickly.  Within an hour, all of my doctors stopped in to discuss the surgery with us.  We met with the Breast Surgeon, the Plastic Surgeon and. last, but certainly not least, the Anesthesiologist (my new best friend!). The thing is, I had it easiest of all of us. I was going to be put under general. I didn’t have to sit and wait for HOURS wondering how everything was going — nope, I got to sleep through the whole damn thing. I felt really badly for my family and husband. I can’t imagine how sucky those 7 hours were for them.

When I first came to in the recovery room, I immediately asked for Paul. Though I was still groggy, they let him come in because I was the only patient in recovery.  Apparently, the first words I mumbled to him were “Am I still pretty?” he heard something else and responded, “Huh? You want pudding?” hahaha. He makes me laugh even when heavily sedated! The second question I asked was whether I got to keep all my lymph nodes. The answer was the best I’d heard in weeks, “Yes”. Whoot whoot!

I’ve gotten a number of questions from my friends about, what, exactly, I had done. So let me try to briefly explain from a layman’s perspective since I’m really not an expert on any of this.  I had a bi-lateral mastectomy with immediate reconstruction. That entails a bit more than the name may lead you to believe.  First of all, my tumor was (love being able to say “was” — thank god that thing is out of me for good now!) located in the upper, outer area of my left breast (right underneath my armpit).  Just keep that information in the back of your mind for now.  So, recall in my last post I mentioned that I had to meet with the Nuclear team the day before my operation so that they could inject a substance into me that would help my surgeon locate my sentinel node? Well, that is the very first part of the surgery.  My doctor used a small Geiger counter of sorts to locate the node (which is actually fairly close to where my tumor was located) and then she removed it.  That node sample was analyzed immediately (while I was still on the table), if any traces of cancer came back, my doctor would have removed all of my lymph nodes on the left side (which I really, really, really really did not want to have happen). Thankfully, the node dissection came back negative  for cancer so I got to keep all of my lymph nodes except foe the sentinel. YAY!

Next, the surgeon went on to remove the tumor. Her goal was to get clear margins (ie. cut the entire thing out and ensure that it hadn’t spread any where else). Since my tumor was so close to the skin — she did end up taking some skin, just to be safe. The tumor was then sent off to the lab for a full pathology analysis. After that, she removed all the breast tissue in the left and the right breast (I’m sure this was also sent to the lab for analysis too).

The type of incision she used is called “skin sparing”.  That means they were able to preserve my areolas (I know, TMI — but if you don’t want TMI, then you shouldn’t be reading this blog at all!) which is HUGE.  If all goes well and heals properly, my scars will be unnoticeable because they will be underneath the fold of my new bionic boobs AND I won’t have to have areolas tattooed on — because I got to keep my real ones. Yay!!

As for the “immediate reconstruction” part. It’s not like I have my bionic B cups right now. No, no! I have two prosthesis’ in place which my plastic surgeon will slowly fill up with saline over the next few months. We have to do this slowly to allow the muscle and skin to stretch and adapt. I will keep the prosthesis (also known as “spacers”) in until I complete chemo.  Once chemo is done, I’ll go back in for another surgery where the plastic surgeon will replace the spacers with my actual implants. The real implants might not go in for another 4-6 months.

So, what that means dear reader is that I am as flat as a little boy at the moment.  It’s somewhat shocking to look at since I was a C cup just a few short days ago. But PAMF and Jennifer Glover (my amaze nurse coordinator) did an excellent job mentally preparing me for this. End of day, I am just so happy that they cut that friggin’ tumor out of me.  I hated having it inside me. I don’t know about other people who have had breast cancer — but I could feel my tumor every second of every day.  It throbbed — literally. So, I’ll take my temporarily flat chested self over gross tumor any day!

The worst part about recovery by far are the Jackson-Pratt drains and grenades.  I have two tubes snaking through my chest and coming out either side of me.  At the end of the tube is a bulb that collects all the stuff that drains out (we lovingly refer to the bulbs as “grenades” because that’s their shape).  We have to “milk” the tubes (this is exactly what it sounds like, you basically pull on the tubing to help any clots etc move along through the tube and fall into the grenade) and empty and measure the drainage a couple of times a day.  I can’t have the drains taken out until each one produces less than 30cc’s for two days straight. I am nowhere near that 😦

Fortunately, somebody invented the softie (I mentioned this in an earlier post as well). A softie is a cotton tank top that has a pocket/pouch on the inside where you can store your grenades.  This helps avoid any tugging or pulling on the drains. I’ve been living in my softies since I got home!

So far recovery has been pretty good. I am hesitant to say easy — because I have definitely had my moments/breakdowns. Our plan was to stay ahead of the pain the entire time — but we fell behind it two or three times so far — and that was no fun at all. Like I said to Paul, I am not trying to win the award for toughness here. I am a wimp and I want the drugs. So I am still fully medicating every 4 hours. I am not ashamed to admit it. There is no prize for gritting your teeth here! If you are about to undergo this surgery, just take the drugs.

Also not sure about other people’s experiences, but my doctor took my dressings off my chest the morning after surgery. He doesn’t believe in binding the area and keeping it wrapped up tight. So I’m sporting the au natural look (OH! speaking of au natural — let me tell you — my natural stink is disgusting. My armpits are SMELLY!!!!!). I was allowed to shower 48 hours after surgery, but I since I can only raise my arms to shoulder height (or a 90 degree angle) I can’t shave my armpits. I also can’t put deodorant on because that can cause skin infections during the healing process.  OY! I feel sad for Paul, he has to sleep next to such a stinkpot! lol

There are a few things I wish I had known prior to the surgery. I am going to list them here for anybody who is about to go on this journey themselves:

1. Abdominal Muscles. Make sure your abs are in good shape. Since you can’t really put pressure on your hands to help prop yourself up or scoot back in bed, you need to rely on your abs to do a lot of the work.  Mine are in bad shape and am I ever regretful about that!

2. Pillow Talk. Take a pillow with you to the hospital because you will need it for the ride home. You will want to put it in between your chest and the seatbelt when you go home.

3. Shelving.  Move everything you will need to a lower shelf.  Personally, I keep all my toiletries (contact lens solution, toothpaste, moisturizer etc) on the top shelf behind our bathroom mirror. You won’t be able to reach that high when you get home — so move all that sort of stuff pre-surgery.

4. Reading. I saved all of my magazines for the past 6 weeks. My plan was to flip them while laid up in bed.  That plan back fired royally. I get really dizzy whenever I try to read (which is one of the reasons it’s taken me so long to post anything to this blog). I assume it’s all the drugs and the dizziness will pass — but if you were planning on doings lots of reading, I’d suggest you rent a movie or two instead.

OK, that’s all I can think of at the moment. I’ll post again soon.

Thanks to all for reaching out and supporting us. It means the world to us, and to me especially! xoxo

Sick with Worry

This post will be a quickie.

Ever heard of the saying “Sick with worry?” Yeah? Well, me too. But, I’d never actually experienced ‘sick with worry’ until my diagnosis.  It’s terrible — horrible. Three words that seem totally innocuous.  However, when you are actually sick with worry, you will be on your ass. Or the bathroom floor, in my case. Just dry heaving and spinning. I’ve not figured out a real solution to this problem. Right now my best defense is Paul. I just let him rub my back until it’s over and then I hug him and cry into his t-shirt.

Sick with worry…. You’ve probably read those three words, and/or said them a million times in your life. I now know what it means and I hope none of you out there reading this ever experience this feeling.

Now, back to reality — get out there and VOTE, today is ELECTION DAY!