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Giselle always got this crazy cat third eye that would appear every time we gave her Lorazepam. She'd yowl and protest you shoving the shaven-down half of a itty bitty pill down her throat, but within 30 minutes would be zonked and ready to travel.

That memory made me smile a bit as I dug through the bathroom closet looking for the prescription that I had so many months ago. I used to take Atavan (Lorazepam) after I got the port inserted and would lie awake feeling the creepy sensation of the port going into my vein and grappling with my constant worry that it was somehow going to cause a clot. One Atavan and thirty minutes and I would forget about the port and wander off into sleep.

Tonight I found that trusty pill bottle with half of the scrip left, so thankful that my own distaste for being on prescription drugs keeps me from enjoying them enough to run out of them. I'm trying to corral my mind back in tonight, keeping it from repeating the anxious worry that's been swirling in my brain since I came home from New Orleans. "Is it going to stick this time?" my brain wonders and as I prod my breast for any sign of hardening. In the pit of my stomach, I think I know that the answer is "no", because I think that I know these things about myself and the way my body works.

So with that whisper to my nervous self, my brain goes into a visual overdrive of what life will be like. "If I lose my breasts," I think, "I'll leave my job and just work out all the time. I'll be in the best shape ever. I just won't have any breasts. It will be fine." And then, my hopeful self says, "Well, maybe in a few years they will come up with a surgery that works for me." and my nervous self laughs softly, pats my hand and reminds my hopeful self that we've been here before, that it's not the procedure, per se, but what my body does to it. And then my brain lurches into another scenario where I feel every bit of what this 14 months of procedures has done to my body, feeling I've been completely trapped in intervention after intervention until I just want to scream.

A picture of Truman-Show-esque carousel ride just popped into my mind. Round and round, garish lights and horrible music and the sickening up and down of hard uncomfortable horses set against a white sound stage. And then it's as though someone rips the needle from the record and everything stops, the only sound is the clicking of my heels as I walk for the door and open it to the bright sunlight. That is what I want to have happen right now. Really, honestly, truly. I want to somehow walk out of this sideshow of a life I have been given.  I want everything to just go back to the way it was a year ago January, before any of this insanity started. I want my body back, I want my time back, I want my life in all of its complexities that I still need to figure out back. I don't want to need help. I don't want to be frustrated. I don't want to be sad. I don't want to be angry. I don't want to be what I see in the mirror these days.

So it won't be that. I will get through the next couple of weeks. The post-surgical depression/anxiety that I am feeling will subside as things straighten out, as I can move around better as the incisions heal, as I know if these breasts are going to stay or go. Life will even out. I know this. I hold on to this as fiercely as a child clutches a new treasured stone at the beach.

Thirty minutes has come and gone and I'm not sure if it's the drugs or the writing, but I think I should be able to sleep now. I'm not writing this to worry anybody. We've been here before, you know, and I appreciate that you are still here with me. It's just been a really, really long road.

P.S. I just looked back in this blog to find an old link and was completely surprised that this recent reconstructive redo was one day shy of the ONE YEAR anniversary of my mastectomy/reconstruction that started me on this path. I don't know whether to laugh or cry. A year and we are still walking.

Navigating Who I Am (in this space)

Little hands crept around the door frame. "Mama?" her voice called tentatively. "Can I ask you something?" I was in the shower and panicked for a moment. Ever since my first surgery, we'd made an agreement with the kids that time in the shower and getting dressed time were "personal time". "Dad doesn't watch Grandma Pat get dressed. There is a time when you get old enough that privacy becomes important," was my reasoning to them, but it was 100% that I didn't want the children to see what had become of my scarred and destroyed body. I thought it would scare them. Because, in all honesty, it still scares me.

But here she was, my little girl, needing something.  "Come in, sweet girl," I called. She came in, fully in the middle of her thoughts, and stopped. She looked. She looked puzzled. Then, taking in what she saw in this new landscape of her mother's body, she started in with her question. I smiled, she smiled. It was ok.

Dealing with the reality of what happens to your body during breast cancer treatment is one of the most difficult aspects of living through this journey. You feel sick from the treatments, you fear death, you fear the unknown, you have to work through all sort of emotional issues with friends and loved ones about your illness but one of the hardest things, every day, is to deal with the body that you inhabit. For me, that is feeling stripped down, genderless, alien myself. I remember seeing a picture of Ralph Fiennes as Voldemort in the last few Harry Potter movies and being horrified because I identified so strongly with his bald, pale, almost genderless presence. That's the shit side of what body image in this space does to you. I've mourned that in previous posts, but it's something that is always with me.

Yesterday, a friend sent me an article that spoke so clearly about what its like to feel the tug and pull of these body changes. Even if you are right with it (which, obviously, I am SO not), there are others whose opinion, feelings and thoughts you have to navigate. Children, partners, friends...it's overwhelming. My means of dealing with it have been to turn inward and just try to put my head down and get through it, figuring that at some point the new normal will kick in (post-chemo, new surgeries, weight loss) and I will be able to deal, or at least deal with what is permanent. But its hard and lonely working that way, even though daily I hear from friends that I look beautiful. It's a mind mess I that I am still working to resolve.

So this article and the Scar Project in general has done a lot for me. These are *beautiful* women, lovingly photographed by a fashion photographer. Some look amazingly beautiful, some are just who they are. I remember seeing the photo of the pregnant woman on a poster in Cincinnati and being shocked and horrified before I myself was a double mastectomy survivor.

Now, I want others to see so that we can make this all more normal. It's there and it's the truth. And there is no shame. And there can be beauty. But shit, it's hard.

Article here:  http://www.brainchildmag.com/essays/fall2011_lynch.asp

The Scar Project website here: http://www.thescarproject.org/

Ashen from the Inside

I wake up in the morning with a face that resembles the Laughing Buddha, except that I'm not laughing, just swollen and red from the steroids that have wrecked my sleep and made me edgy. I remember Mom looking like this too so I welcome the day with the sarcastic smile she used to give to say "this shit sucks" when we'd comment on the chemo.

Chemo fucking sucks.

Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.

It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.

But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."

That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.

I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.

Right now, I just feel like curling up and escaping for a few months.

Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.

Into the Void

The past two days have been rough, really rough. In them I have learned a couple of things, the most important being that perspective is everything. I'd guess that people talk the biggest game about the upcoming bungie jump until they peer over the platform and nearly lose their load. I am here to tell you that a mastectomy covered in bandages is the equivalent of the bravado that happens on the ground. The bandages come off and your guts are in your throat. Facing things head on in this space rocks your world.

So all of these silly things have been floating through my mind for the past couple of days. I know it sounds really bizarre, but I feel like I am saying goodbye to a part of myself that has been incredibly important to me. "What?" people say, "they are only breasts! Who cares as long as your are healthy!" *

I care. Let me make it clear.

I do care. I care that I am healthy, but I also care that I have lost a part of my body that meant a lot to me. At the risk of sounding completely vain, before having children this was one of my, ahem, better attributes. I was known in college as the girl who had the Vogue model breasts. So, pardon me if I seem shallow, but I am bummed that they are gone. I am a woman through and through and I loved that aspect of my femininity. (side note: we all know that this was like 20 years and 100,000 miles ago...yes, the warranty had expired and they needed retreads...but let's not mar the story with the addition of unnecessary facts).

And I am really bummed that I had to explain to my kids that I don't have breasts anymore. That is a fucking hard thing to explain to child. How does a child work that around in his/her brain? And when I give my kids hugs now, their little heads strike hard muscle instead of the softness that they have known since the moment they were brought into this world. I remember snuggling up to my mom as a child, the softness, warmth and her smell enveloping me. I know this is important to my kids too. And I know they will deal, but it sucks for them too. So much suckitude.

And there are countless other things to be mad at. Things I can't begin to consider and things that I hope will normalize. I am trying not to hunch over. I am trying to look at myself in the mirror. I am trying not to feel like a freak. I have met a handful of women who have gone this route and have done it with incredible grace. They have found that middle ground and I am reaching out to them and learning from them. As I sit here one month out from the first surgery, it's like starting all over again but not feeling prepared. I had written off this branch of the decision tree, remember? It's not forever, but it's for 6 months which is a really. long. time.

I'm trying to find the humor. I'm trying to find the thing that sticks for me about this experience and is the gem I take from it. A friend told me that maybe it's my Amazon heritage come to fruition. I kind of like that idea. Or, this is the prism through which to see life for while (I could totally pass as a man...hmmm). Or I just play it off as well as I can with Aunt Pat's advice about always looking fabulous as long as you have red lipstick and a Hermes scarf. If you can't fix it, feature it, as Joanna always says. But push it away with humor or bring it in with anger, it's wounding in a way that I know I will survive, but that I need to honor.

*I also want to say that in the not-so-distant past I was very cavalier with a friend about this very subject. I have a couple of friends who are BRCA positive and have been grappling with whether or not to do elective bilateral mastectomy. In talking to them (before my own BC diagnosis), I think I was really preachy about preserving health, yada yada and all with the "they're just breasts" kind of talk that makes me cringe now. It's a BIG decision. One that I would make again, absolutely, but I wish I had been more sensitive then given what I know now.

So me and this body? We don't get along...

I have a confession to make. I don't trust my body. It's not really that I don't trust my body. I've seen it do amazing things like birth a child without meds and manage to not freak out when boiling water was spilled on it. But we've had a long, hard relationship, this body and me, and I'm at the stage where I'm not quite sure it's going to be able to pull this off.

It's not the cancer that I am wary of, funny enough, but rather the reality that I am not a good healer. Get a scratch, gain a scar. Ages pass before simple wounds heal. I'm healthy, no bad habits, no reason for it to happen that way, it's just my body's own little way of saying "ha ha, you thought you were in charge but OH NO. bwahahahahahahaaaaaaaa."

If you know me well, you know why this makes me anxious. Wednesday's my surgery...wax off the old, wax on the new in a two-fer surgery which will keep me out of going under again...and, typically, there is this lovely little pocket of fluid (cough, egg, cough) that keeps collecting under my biopsied arm. "We'll just have you in on Monday to see what it looks like," the plastics nurse said. "Nobody's saying we'll cancel anything, Dr. Wilkins just wants to check it out." CANCEL? Who said anything about canceling anything?

Canceling means the domino effect goes into play. Mastectomy but no reconstruction = stretchers, healing from reconstruction, then chemo all the while being puffed up slowly but surely (weekly!) by the stretchers, then implants, etc, etc. All along the way, my body saying "see this wound? three weeks at least. This one?...hmmmm, were you planning on going somewhere? Didn't they restrict your flying? How does a clot sound?"

It means no boobs for awhile. It means more surgery down the road. It sucks. This is a three-phase process, remember? Phase I: Biopsy  Phase II: Surgery and Reconstruction  Phase III: Chemo. There is no Phase IV (that includes no Phase IV for recurrence either, damnit. We are just not going there.)

I am afraid of what the mammageddon might bring. Sometimes I wish that Allie Brosh (click on her name) was my very best friend and I could convince her to make a cartoon about the tumor, this egg under my arm and the rebellion that lives beneath my skin. I can see her drawing little smiley cells just waiting to flat tire my highway to happy healing.  She'd get my fear of Frankenboobs (those would be boobs that look like they were stitched on by ham-fisted minions of the underworld flamed up by evil red scars courtesy of...yep, the cells) and would probably understand this slight paranoia I have about needles in my veins. Ok, I can't even go there tonight.

I'm not really sure where I am going with this, but I feel like I am going to spend the next hour or two lying awake in bed with it on my mind. Just to send you off on a positive note, here's another Allie Brosh piece that every former kid and parent will understand. We all still have monsters that keep us awake at night, they just come in different forms.