Friday, February 8, 2013

The Breast of the Story: Part Two

... Continued from yesterday's Part One

Buffer -- again :) 
... Like always, I give this account not as a way to tell other patients how it will be for them because there's no way I can know that. Instead, I give it as one piece of a much larger puzzle. Maybe there are similarities between us, maybe there aren't. But hopefully my honest account helps you find some ounce of peace in a totally crappy situation. So here are five things (in no particular order) that I would say about a double mastectomy with reconstruction.

I don't necessarily choose these because they are the five most important things I think about the whole experience (I don't feel up to figuring that out right now). Rather, they are perhaps the less obvious things; thoughts that may not show up in more mainstream or clinical materials on the topic (I assume those exist although I've never read a single one).

#1.  Thank goodness my family and friends convinced me to do it. 

OK, this one is in a particular order. It is first because it is by far the most important thing that I learned from my whole double mastectomy with reconstruction thing.

*  *  *

When I was a senior in high school, I applied to five different colleges -- Amherst College, Williams College, Harvard University, Bates College, and Bowdoin College. Which was the "safety school?" you ask. That would be Colby College. Kidding, Katie Bailey. Truthfully, I didn't have one. 

When the responses from admissions offices arrived in April 1998, I started to get a pit in my stomach. Sorry, not you messages arrived from Amherst, Williams, and Harvard. Then came Nice try, but let me show you the wait list from Bates and Bowdoin. I was crushed; especially by the Bowdoin letter, and the fact that Bowdoin hadn't opened up its wait list in years. I had wanted to go to Bowdoin from the day I stepped foot on the campus, so when they wouldn't have me, and no one else would either, I felt pretty lost in the world. 

That's when my team of angels swooped in, with my Mom helm. When I was too disappointed to get out of bed, my Mom helped me figure out a plan. She helped me write a letter to Bowdoin explaining the situation -- how much I wanted to go there, that I was ranked 7th in my high school class but hadn't gotten in anywhere, that they'd be hearing from me again next year. My high school friends and teachers also wrote letters to Bowdoin's Dean of Admissions trying to convince him that he should let me in. And to give me hope and direction, my parents arranged with my aunt and uncle in Houston for me to visit them over April vacation. 

I flew to Houston that April to try to come up with a plan for my unplanned year off before college. My Aunt Jacqueline was going to help me find an interesting job or a place to volunteer for the year. I was itching to try something new and although I had assumed it would have been college, I gradually got excited by the idea of it being a year in Houston doing something interesting and productive. 

The second letter from Bowdoin came while I was in Houston. I'll never forget my Mom's voice when she told me or how tight she hugged me when I got off the plane in Boston. Bowdoin had found a place for me in its class of 2002. I was elated. I was going to be a college student after all. I still wonder if any other freshman was more thankful than I was to step foot on that campus in the fall of 1998. 

This story was dancing in my head when I wrote the first POST that I ever wrote about my Mom. And it's stuck in my head tonight too, because yet again, I find myself starting from a place of utter appreciation.

*  *  *

I sometimes think that people make some of their most important life decisions when they are in a terrible frame of mind to be able to properly do so; people decide to get in the car with a drunk driver when they're drunk too; they decide to cheat or steal when they're put under peer pressure, financial pressure, or when they're generally misguided; and they make life-altering medical decisions when they can't even collect their thoughts enough to make a cheese sandwich. The cheese sandwich example is part of why I constantly talk about the good people who have helped me through this ordeal. Because without them, I don't know how I'd be right now.

Honestly, I don't even know how I'd look right now if it weren't for my family and friends. I may have looked a bit lop-sided, with one real boob and one fake one, and while the aesthetics of that asymmetry may not have bothered me, having one boob where the cancer could still go would have. Of course I don't mean that women who choose to keep their breast or breasts are going to get cancer again. I only mean that I know my own twisted mind and I know the terrible things that it would have invented in that old right boob.

Had I gone another route, I could have looked completely flat -- breasts gone and nothing there to have replaced them. That was the more likely scenario. But in this scenario and the one before it, I think that I would have eventually decided to cut off my other breast and get reconstruction. I think that I would have decided this once I started to see my future again, and that would have meant that now I'd be facing multiple surgeries instead of just the one that I still have ahead of me.

In the end, the route that I took was the perfect one for me. I feel like a better version of my old self and I love it. This is why we need help in times of crisis. Because my family and friends knew me enough to know what I'd want when I got back to being myself again. They pushed me to consider reconstruction when I was too destroyed to consider feeding myself. And they were right. I am happy this way.

#2.  The mental part was so much worse than the physical part. 

Of course having your breast tissue carved out like pumpkin gizzards on Halloween isn't going to tickle. My body hurt after the surgery, although I always find it so hard to remember physical pain. What I do remember, however, is that I could bear that pain with the help of some trusty meds (which I only needed for a short time before Tylenol could do the trick). But it was the fear, the unknown, the waiting that was far worse than the physical pain (yes, there's medicine for that too but no pill that can keep you conscious can take away even a large portion of that fear).

I remember before my surgery my friend, Lisa, told me that physically, a mastectomy wasn't as bad as a C-section. I would definitely agree with her. Perhaps the C-section is more difficult because after it, you can't get any sleep and a little baby lies on top of the tender, stitched up abdomen. But in all seriousness, the thought of getting my breasts removed sounded like the most painful thing that I could fathom -- back to that pumpkin carving metaphor. Ouch. Amazingly, however, it really wasn't as bad as I thought it was going to be. Then again, that's pretty easy to say in retrospect, huh!?!

#3.  The scars will change. 

When I first peaked under the gauze to the massive scars on my boobs, I was surprised to see that my skin was bunched up, forming a kind of mountain range affect along the length of my boob. For months, I wore a bra in public not for support, but rather to cover up the seam-like look that the scar created under my t-shirt.

Then, almost suddenly, the ridge was gone and the scar completely flattened. Dr. Chun explained that the plastic surgeons now teach residents to collect extra skin under the stitches like she had done so that when the skin pulls and tightens, it falls perfectly into place. Utterly amazing.

My little Hope book has a great quote that I think of almost every time that I catch a glimpse of my scar-covered body in the mirror.

A scar is a reminder of something bad that has happened. But a scar is also a sign that healing has taken place. 

Aside from the scars across my boobs, I have a scar from where Dr. Nakhlis removed my sentinel lymph node, and scars from where Dr. Chun placed the drain tubes (two on each side). I also learned that I have a skin allergy to bandaid adhesive because the tape that the ICU team used to keep the heart monitor stuck to me left little squares of scarring all over my chest. Not pretty, but it will do.

The small lymph node scar is just under my arm; the two drain scars are below my boob, and the bandaid marks from last November are in a pattern all over my chest. Healing has definitely taken place!
#4.  I still can't feel anything but I'm told that one day, I will. 

I always assumed that once I lost the feeling in my chest, it would never return. Dr. Chun again surprised me, however, when she said that I will gradually get sensation back in my breasts. She told me this a month or two ago, after I asked her about a terrible itch that I couldn't scratch away from my numb breast. Strange right?!? To feel an itch on something that I can't feel. It weirded me out. Patients say that they feel all sorts of different things when the nerves are reconnecting again, Dr. Chun explained. Pain, itching, tightness in the breast. Who'd have known? Not me, which is why this is #4.

#5.  I'm not done just yet. 

On April 3rd, while I sleep peacefully under general anesthesia, Dr. Chun will cut open those two long incisions and remove the tissue expanders full of saline. She will then place in their spot two silicone implants and I will (hopefully) enjoy a relatively short recovery. Every ten years, I will need to get the implants replaced. I always like to hear doctors planning for something 10 years away, so I'll take it.

This surgery needs to come long enough after the chemo that my body is ready for it, but Dr. Chun explained that there's no rush. So I chose to wait until after hockey season so that things are a bit easier around here.

After the implants are in and I'm healed up again, I will need to decide if I want to order me up some nipples. In all honestly, I really don't care if I have nipples or not, and I don't say that because I'm too scared to make the decision. This time, I just really don't care. In a way, I guess I've come to like the way my boobs look now. It's more robotic than human, but we are in the 21st century, aren't we?!?

Extra Credit Fun Fact.

Often when I get out of the shower, I'm cold. I noticed soon after my bandages were removed that when I get goosebumps all over my chest, I don't get any goosebumps on my boobs. Isn't that so strange?!? What the heck are goosebumps anyways? Speaking of goosebumps, this blizzard is nuts.

And that's the breast of the story. 


  1. I love this post! I can relate to so much of it! I never had any pain in the boobular area after my bilateral mastectomy, however. Now, the tram flap incision, that's a different story! I still have some pain there, and it's been 10 months. I have no feeling in my boobs, except the perimeter. I was told I would never have any in the nipples. Meh. Oh, and DO get the nipples done. One of the easiest surgeries you'll ever have, plus, when they're all healed, you get to have TATTOOS!

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