3 Year Mastectoversary

April 5th marked three years since my initial surgery. You can read the first post about my double mastectomy here, if you feel so inclined.  I didn’t even realize it was an anniversary until the day after; it just goes to show how much distance time can provide. At my oncology follow-up this week (I see her every 6 months now), my doctor talked about recurrence for Triple-Negative Breast Cancer, and cited some information about the highest likelihood of recurrence being in the first 2-3 years from diagnosis (more here). I guess it feels good to know I’ve reached that point, but I have a hard time breathing easy just because of some studies. I still feel like my risk of recurrence is high and I’m not sure that will ever go away.

I felt, on this date, that it was appropriate to share a recent NPR article about NOT having a double mastectomy: Why My Wife Didn’t Choose a Double Mastectomy. Of course, the woman in this article does not carry a BRCA mutation, so her situation is different, but I did want to highlight that mastectomy is not always the best choice, even for people WITH a mutation. When I first learned of my mutation at age 22, I opted not to have surgery and I didn’t plan to even start thinking about surgery until I was at least 30. Looking back, even though I had cancer, I wouldn’t have changed that decision. I think a lot of women get vilified for choosing not to have surgery, and I think it’s important to hear that they are not alone. The choice is so personal and people should be supportive no matter what. 

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Dancing into a Double Mastectomy

I know I should feel joy watching this video. So many others found it inspiring and great to watch. For some reason, though, I feel kind of bitter. I was in NO mood for dancing before my double mastectomy, though yes I do remember times during my treatment and surgeries when I made jokes or did things to lighten the mood and be positive in the face of overwhelming negativity.

I wonder how other survivors feel. I’m probably just bitter because I don’t have thousands of YouTube views. Or maybe it’s because things like this perpetuate the view that breast cancer and cancer surgeries in general aren’t all that serious. (More likely, though, it’s the YouTube views thing).

The Tuesday Night Blues

Tonight is just one of those nights when I am frustrated by everything. Work has been stressful and and unfulfilling. There was a massive leak in our bedroom ceiling and they’ve cut a gaping hole in it and we’ve been sleeping on the mattress on the floor in the tiny second bedroom. Our apartment is messy. None of our pictures are hung up. I’ve been suffering from recurring and nasty UTI’s for the past month and a half and I don’t know why. My right breast, same area where the tumor was, has been aching on and off and it’s probably just my muscles getting used to the implants but it scares the s&%^ out of me. One of our male neighbors… can’t tell if it’s up or down… is singing Katy Perry at a volume and tone that’s inappropriate even for Katy Perry in the shower.

And then to top it all off I got a “FINAL NOTICE” bill from GWU for a charge that I don’t understand from my MRI back in FEBRUARY 2011 (which, mind you, my parents already dished out more than $1,000 for). Not only that, but I’m in the midst of writing an appeal to insurance for another $1,000 charge for the surgery I had at the end of April, which they won’t cover because, as the Explanation of Benefits explained, “a response to our request for information from the provider has not been received.” All fine and good – except why am I being penalized for the billing office’s incompetence?

I went to a “Living Well with Cancer” retreat this weekend at Smith Center here in DC and they were all about stress reduction because stress allegedly feeds cancer.

I think that’s a bit counter-intuitive because:

Cancer is stressful. Life after cancer is stressful. Dealing with insurance companies and medical billing departments is stressful. Heck, life even without cancer in the picture is stressful. 

I’m going to go attempt to do some yoga and breathe.

Breathe. And imagine you live in a serene bubble on Kapalua Bay Beach in Maui.

 

New Boobs (Exclamation Point?)

My exchange surgery was a week ago – meaning I no longer have those hard expanders and instead I have squishy new silicone implants. I say this so nonchalantly, yet, 9 months ago it felt like I would never reach this point. The exchange marks the official “end” of the initial steps of my journey:

  • Mastectomy – check.
  • Embryo storing – check.
  • Chemo – check.
  • Reconstruction – check.

From here on out, anything that happens is either cosmetic or recurrence. Technically, I am completely finished with this cancer experience.

But am I jumping for joy? Not so much. For the first couple of days after my surgery, I felt like crying (and I did a few times). I was disappointed with the new boobs. Though I myself asked for them to be smaller than they were naturally, I felt (and still feel, to some degree) that they were too small. Where did my larger-than-expected chest go? Why do I no longer look like the girls in the Victoria’s Secret commercials? Dammit, why did I give that up for the “convenience” of having a smaller chest?

Everyone (including me) was so excited about my exchange. My friends want to throw me a boob party. “Can’t wait to see your new boobies!” It’s a lot of pressure to live up to, and I guess I thought I’d walk out of the recovery room already looking like a Playboy bunny. It’s just not so. These funbags need time to settle into place, and if, when they’re settled, I’m still disappointed, then I’ll think about next steps. Going bigger, perhaps, or fat grafting. Whatever happens, it’ll have to wait a couple of months because I’m eager to get my real life back and make 2012 a different year.

And, the larger issue here is probably that I’m finally mourning the loss of my boobs. I never got to do it back in April after my mastectomy, because I was still in survival mode, worrying about fertility and impending chemo. Now that all that’s over, I’m thinking, “Whoa… my boobs are gone?” My whole body has changed – as my whole life has changed. I’m coming to the realization that things will literally never be the same as they were before March of this year.

On two better notes, the silicone implants are dreamily soft, squishy, and natural feeling. And they are shaped great, despite the small (to me) size. Any Tom, Dick, or Harry looking at me on the street would have no idea these were implants. Save for my scars, they probably wouldn’t even be able to tell looking at my without a top on.

And I want to share a painting that I bought yesterday at a local DC art fair. It

Corks, Coasters, and Sugar Cubes, by Phyllis Dillinger (artcure1.com)

caught my eye at first because it was my favorite color, green, but I wasn’t totally sold. That was, until I spoke to the artist and learned that she began painting after her sister died of ovarian cancer and she donates 50% of proceeds from her art to ovarian cancer or breast cancer organizations, it seemed like destiny. And I am now the proud owner of this abstract beauty.

Reconstruction

I guess I should mention I had surgery on Tuesday. Nothing huge, but my port was removed and I had some work done to my left breast, that pesk that didn’t heal properly after my double mastectomy so it’s taking a couple extra steps to get it looking normal before I can get my implants. With all that happened this summer, a small surgery didn’t strike me as big news. In fact, it felt pretty routine – being in the hospital, putting on the gown, getting my blood pressure checked, answering all the “Are you pregnant, how much do you weigh, when’s the last time you had anything to eat or drink, etc.” It was all very nonchalant, which in some ways scares me, because surgery should always be taken very seriously (especially by the surgeons who are coming at me with sharp objects).

I kept telling people that, after chemo, surgery is almost welcome in my life. Not so much for the act of surgery itself, but for what these surgeries represent: reconstruction. Getting put back together. Getting a beautiful, new chest that I can flaunt on our Hawaiian vacation in January, along with a short hair-do and the anticipation of a year that won’t revolve around cancer.

As I said, the surgery consisted of a port removal, which I am thrilled about. I own a lot of scoop-neck and v-neck shirts, and it was so hard to hide the darn thing. Plus it made me feel like there was an alien poking out of my skin, and the scar was wide and ugly (though they tell you that it’ll be “no more than a couple centimeters”, right on your chest where everyone can see those couple centimeters make a big difference). On the sound advice of my parents, I asked my surgeon to take out the port instead of the interventional radiologists who put it in, and I am hoping that means a much cleaner and less noticeable scar. I still can’t say yet as it’s covered over with a bandage.

On my breast, the plastic surgeon cut out my nipple, which was right above the fold,  much lower than it should be, and grafted it into place to match my right side. It’s all still under bandages, but I’ll see things on Monday when I have a follow-up with the surgeon.

Luckily, I’ve had no significant pain – took a couple Percocets Tuesday after the surgery because the port removal incision hurt, but haven’t taken anything since. And I’m glad to have this time off work, too, because work has been crazy and will be crazy for a couple more weeks. I just have to make it through this year to January!

A note about my last entry: I hope I didn’t sound full of myself. I’ll admit, I felt pretty badass when they approached me to make the video. Yes, I thought, my story will make great fodder for a documentary: young girl, dead mother, unfortunate genetic predisposition, bald, etc. And a small part of me wanted to do the documentary for myself – to talk about my experience and have things on tape so that I never forget. But even more so I wanted to show that young girls do get breast cancer, and they can get through it. For all the doctors who said to other women, “You’re too young, come back in 6 months.” For all the young women who felt alone and that all the others in the support group didn’t understand the unique issues that young people deal with. For anyone who didn’t want to hear, “But you’re so young” and “How unfortunate” and “You’re going to get through it and live a long, happy life”. That’s who the video (and this blog) is really for.

My breast surgeon on GMA

Check this out – my breast surgeon, Dr. Christine Teal, was on GMA this morning talking to Robin Roberts about her prophylactic double mastectomy.

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt_2_65.swf

It was pretty cool to see the woman who operated on me go on TV and advocate for this procedure, as controversial as it is. Dr. Teal has a family history but no BRCA gene and no cancer herself, so some might find this a bit extreme. Still, it made me feel wonderful to know my surgeon was as adamant about eradicating her own chances of breast cancer as she was about mine, and seeing what she said about the strength of us breast cancer survivors made me tear up a little.

Go Dr. Teal!

Creating new cleavage

Today was my first tissue expansion! It was actually kind of a “yay” moment amidst all my anxiety about starting chemo (Thursday… eek). For those of you who don’t know, during my mastectomy, the plastic surgeon implanted expanders under my chest muscles. Throughout the next couple of months, these will be gradually expanded so that my skin and muscle stretch enough to make room for the real silicone implant, which I’ll have inserted after all my chemo is finished. That’s called the exchange operation – when the temporary tissue expanders are swapped for the real implants.

Because of the revision I had to have a couple weeks ago, my surgeon had to take down the left expander to almost nothing, and I was quite lopsided. But today, she filled the left side with 120 ccs, almost 2/3 of the way to matching the right side!

Yay for being a little less lopsided and a little more womanly. Yay for being so healed from surgery that my surgeon is okay with expanding me. Yay for not even feeling the small pinprick of the saline tube needle, which was inserted into a port on the expander so the saline could be injected in. Yay for not feeling much tightness or soreness at all, at least not yet. Yay for preemptive Tylenol.

And yay for this article, which totally excites the singer in me: Cancer charity gets funding for choirs after proving the pyschosocial benefits

The Art of Healing

Almost two weeks post-mastectomy! Still feeling wonderful; honestly, I think one of the hardest aspects of this whole experience has been finding a comfortable way to sleep. If that’s my biggest annoyance, I’ll take it. I’m also becoming a bit of a hypochondriac, freaking out with every small pain or stretch or movement I feel, thinking my sutures have torn or my expander has burst. Luckily, my stepmom is a nurse and my dad is a doctor, and at every step they reassure me that I am fine.

What I really want to talk about today is my job. I work as an office manager for the Society for the Arts in Healthcare, a wonderful organization that promotes the arts as integral to healthcare by providing resources, professional development and educational opportunities, and a forum for networking, learning, and furthering the field with colleagues. This past week, we held our annual international conference in San Francisco. Unfortunately, I was not able to go due to the timing of my surgery, but I was so proud to hear a feature about our conference and our organization’s work on San Fran’s local NPR affiliate, which featured our board president, some past board members, and callers who shared stories of how the arts have positively impacted their healthcare experiences. It was a wonderful broadcast and I encourage you all to listen: KQED feature “Healing with Art”.

One of the things I have been down about lately has also been the skin on my left breast, which is not looking so great and taking longer to heal than I expected. I so much want to heal perfectly, without any necrosis (dead skin) or need for further surgeries to correct things, which would give me a less natural cosmetic result. Today, after stepping out of the shower and still feeling disappointed in the state of my skin, I thought about the broadcast and my organization and decided to write a poem to improve my feelings about my skin.

While I don’t usually like to share my creative writing, I like this poem and think sharing it will enhance my positive feelings because I know all of my readers are behind me every step of the way, and I want to add my testimony to that of others who find the arts a powerful healer. Here goes:

“Healthy Skin”

The color of healthy
skin is pink. Peach if
you’re a Caucasian coloring
with crayons.
In shadows black skin
emerges, but the best
we can hope for is pink
underneath. Blood,
oozing, is a good sign,
scary as it is.

Cream is slathered
on the skin, like icing
on a cake, the surgeon said.
Covering up the black
and ushering in the pink,
the blood, the blisters
that pop and reveal soft
pink, underneath.

I hope for pink, because
it is the color of healthy
skin.