It Does Matter

It’s so easy to hear about someone else’s problem and to make an immediate pronouncement about it. How they should feel, what will happen, what matters and what doesn’t (or at least what should matter and what shouldn’t) in the grand scheme of life. The thing is, sometimes you have to bite your tongue.

Let’s face reality. People do not generally like to hear about other people’s problems because most of the time they don’t really give a shit and other people’s problems are boring, annoying, uncomfortable or some combination thereof. I think that we often lob back a not-so-well-thought-out response because we feel that we have to respond to achieve some sort of closure or resolution. Or just to fill the awkward space after someone pulls back the curtain.

But there is something to be said for the American Indian approach to conversation. A long reflective pause can come in handy. It allows one to collect one’s thoughts and assess the new information. Listening is almost always a good thing. Responding without thinking is often not.

What exactly, you might ask, am I getting at? Well, I’ve been noodling about conversations I’ve had and people’s reactions to things I have shared with them. Most of the time I am blissfully upbeat and am able to cope cheerfully and with a good deal of humour. But I, like everyone else on the planet, have my moments of negativity and frustration. And I often feel that whenever I gripe about something I get that rapid-fire response. Shut-down before the conversation really even starts. Sort of like “well you’ve had your cancer and beaten it so really you should not complain about something as trivial as the way you look.”

No one likes a complainer. But people do need to be allowed to express negative feelings sometimes and just because you are on the receiving end of such does not mean you are responsible for “fixing it.” Nor is it your job to dismiss a person’s complaint with a one-liner, although I am 100% certain that I have been guilty of both trying to fix things and dismissing negative observations with an immediate response on numerous occasions. So this is directed at me just as much as anyone else. I should practice what I preach, after all.

I’m looking back, trying to reconstruct (no pun intended) the past eighteen months of my life. How I was then, how I am now. And how my thoughts and feelings have evolved with the passage of time.

I’ve boiled the whole breast cancer ordeal down to two phases. Phase One: kill the enemy. Take no prisoners. This was the honey badger phase. If you don’t know what I am talking about read some of my early blog entries and you will find that the honey badger became my mascot early on in the process, primarily because it’s one naaaaaasty lean, mean killing machine (and secondarily because Randall’s ridiculously effeminate narration on YouTube makes me giggle my ass off).

The goal of Phase One was to eradicate the disease. It felt urgent and critical and it was not difficult for me to be single-minded about the process. The mission was to do whatever necessary to maximise my chances of beating this fucker. So basically I got down to bidness PDQ and that was that.

Throughout treatment I remained hyper-focused on my mission and had only one speed: full steam ahead. I did what I did because I had to do it so I didn’t waste a lot of time being sad about the process. I just pushed through it and tried to amuse myself and others by, among other things, wearing absurd outfits to chemo and walking around London in a pink wig, because I had no choice and I knew it would be over eventually.

At the same time, however, I did spend time considering Phase Two. Phase Two would involve my eventual cosmetic appearance. As my plastic surgeon friend pointed out, once the cancer is a distant memory what you are left with is your reconstruction. It might not seem that important in Phase One but it could later so it needs to be considered carefully from the beginning.

As one relative aptly put it while we were awaiting a diagnosis, “well it’s really going to suck if you have to cut off your boobs, because you have nice boobs.” Yes, I thought. It will suck. And in fact it did and does suck.

Knowing that I had to do it didn’t make it suck less; it merely made wallowing over the suckiness somewhat futile. But still, sometimes I allow myself to wallow just a little bit. Mostly by myself in the privacy of my own home, like while I am curled up on the couch at 11:00pm having just finished another episode of Mad Men courtesy of Apple TV. What? Oh I am only on Season 2 and yes I know I am about the only American left who hasn’t watched every season. Sue me.

Sometimes I do feel that it would be awfully nice to have real breasts again. Something soft that bounces when I run and something with nerves that might notice if I inadvertently walked into a wall. Sometimes I do feel that I am missing something. Something feminine. Something womanly.

In her Op-Ed in the New York Times, Angelina Jolie wrote about her decision to have a prophylactic double mastectomy to reduce her risk of developing breast cancer for which she is a BRCA gene carrier. Ms. Jolie lost her mother to ovarian cancer and very recently, her aunt to  breast cancer.

Ms. Jolie’s doctors estimated that she had an 87% chance of developing breast cancer and a 50% chance of getting ovarian cancer. So she decided to be proactive. She underwent radical surgery so that she would significantly reduce her risk of enduring a Phase One. She went right to Phase Two. It was her choice and in my opinion it was a good choice, a choice I would have made under similar circumstances.

As it turns out, I did not have the “luxury” of foresight with my disease (btw I am not a BRCA gene carrier). So for me Phase Two was not something that I chose but rather something that I had to do. It had no choice but to remove my right breast, although I could have kept the left breast. My thinking was logical. I sort of felt like I might as well just be rid of both if I had to lose the one. That way at least I would be symmetrical, make the plastic surgeon’s job easier and not have to get screening on the left side all the time wondering if disease would develop in that breast.

The decision to remove one or both breasts preventively is controversial. Some believe that doing so is a “psychological” choice rather than a medical one. Meaning that what could arguably be adequately monitored with screening tests and physical exams needn’t be surgically removed simply out of “fear.” That sounds pretty judgmental, don’t you think? Reading such things caused me to revisit my decision. And I can safely say that if faced with the dilemma today I would do the exact same thing I decided to do eighteen months ago.

For me, the decision to remove both breasts was practical. It turns out that my breast surgeon agreed. After telling him that my inclination was to do a “double” I asked him what he would advise his sister to do under the circumstances and he didn’t even hesitate. After all, I was relatively young, at 39. I have a lot of life to live yet. I, like Ms. Jolie, have small children.

Unfortunately for me, unlike Ms. Jolie, I lacked information that would have enabled me to take action before Phase One became necessary. Therefore, Phase One interfered somewhat with Phase Two because I had to (rather unexpectedly) undergo radiation which can cause a host of problems, including affecting the blood supply to the treated area, increasing the risk of infection and of developing a hard scar capsule around the implant. Furthermore, I was not able to keep my right nipple because one of the tumours was too close to the nipple. Again I decided to just take them both off, because they can do pretty groovy nipple reconstructions by cutting a bit of skin from the top of the breast, shaping and suturing it and then eventually adding a tattoo.

Nipple-sparing mastectomies are possible but the nipples do not behave the same way as before and they may lack sensation. And of course there is always that small risk that cancer will develop in the nipple.

So, here we are five months following my implant exchange surgery. My new boobs have softened and settled. But there are a few issues. The incision on the right side (the side that was radiated) is a bit hard and therefore slightly distorts the shape of the implant from a certain angle. Also, the skin over parts of the implant is so thin that I can sometimes feel rippling (sort of like wrinkles) of the implant beneath the surface.

Despite these issues, the overall result is good. Especially considering that I had radiation. Both implants remain soft and in a bra or bathing suit things generally look pretty okay.

But still, sometimes I do feel odd. I look at my reflection and I am confused by the change. The girl with long hair and big boobs has been replaced by a slimmer, smaller- and higher(!)-chested version with short curly hair.

Thanks to an infection in March, which gave me and my plastic surgeon a scare, I have not had my nipple reconstruction yet, so I sort of feel like Barbie (well, maybe a brunette Skipper Barbie because I am nowhere near voluptuous enough to be real Barbie). And I am bothered by the “seam” that the scar on the right has created. We might be able to improve the distortion with some fat grafting (during which some fat would be sucked out of my stomach — bonus — and injected in the small space between skin and silicone implant).

I know that I cannot expect perfection and I do not, particularly with an implant-based reconstruction following radiation, which is known to be problematic. I know that beating the cancer was more important than my cosmetic appearance and I accept that.

Overall I feel pretty good, but I do believe I will feel better once I have my little tweaks. The scars will continue to fade and once I have nipples, provided that goes well, my new twins will more closely approximate the real thing.

But, on occasion I do get pissed off. So let me be pissed off. You do not have to remind me that what’s important is that I don’t have cancer anymore. I know that. And please do not tell me that my cosmetic appearance doesn’t matter. In a world obsessed, and I mean obsessed with breasts and the female form? Please.

It does matter. It matters to me.

4 thoughts on “It Does Matter

  1. I believe you are unbelievably brave and FUNNY. I have included you in my prayers and designated one special angel to watch over you. Can’t wait to meet you in Randolph.

  2. Emily – I just love you! Don’t stop speaking truth to power. You are so good at it!!! Love!! Brooke

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