t minus twenty hours

I woke up at 6:30, my surgical arm uncomfortable, and spent a while tossing and turning, hoping that I might find sleep again through the mild pain and aggressive nerves fluttering in my stomach. It's interesting how that works - the second I am conscious, they kick in. With a deep tickle churning in my guts, sleep comes haltingly to me. I am nervous to the point of needing a word more forceful than nervous or anxious because those words feel right for preparing to give a speech or ask for a raise. Waiting for this surgery feels like something else entirely. I know I will be fine, but the particulars of the surgery itself are crazy interesting (Science - shit's amazing) but strange and scary. Parts of me will be discarded, others sent for study by doctors and doctors in training. The contents of my breast is to be sliced and passed around, and I'm glad that this is the case, but it isn't a scenario for which one can be emotionally primed. It isn't like giving a speech at all.
Tomorrow we are due to check in to the hospital at 5:30am. I will meet my new surgeon (explanation after the jump), my plastic surgeon will draw all over my sleepy naked self - a map for my rearranging. Nurses will come throughout the two-hour prep time to ask me my name, whether or not I have asthma, hypertension, or bleeding disorders just in case the answers have changed in between their visits to my bedside. At 7:30 I will be wheeled into the operating room where I will stay for 10-12 hours while incredible medical feats, like the sewing together of blood vessels under a microscope, are undertaken. I don't actually feel scared about living through the surgery, but the reactionary part of my brain is ticking - it's possible - a fact that is reinforced by being instructed to bring a Designation of Patient Advocate form (instructions for Jason and the medical staff in case I end up in a vegetative state or die). Last night as we drove home from the wedding I had a piercing sort of thought that I kept to myself. When we moved into this house, Jason took out a life insurance policy. It seemed a little morbid to me, but I was won over to its sweetness - he so hated the idea of something catastrophic leaving me in a lurch. I appreciated it, looked over my own meager budget, and said "some other year." Now, not because I think we will need it, but because there is a glimmer of the possibility, I wish I had been so practical about my love for him.
Instead, I am thawing a slice of our wedding cake that he may or may not know was saved so that we can celebrate our first wedding anniversary, one day premature. 

the nodes

All of our preparation has been a little lacking, a forward projection without a precise definition because it all hinged on the contents of my lymph nodes. I have undertaken a dualistic mental preparation for better or worse news - because even mastectomy can come with better and worse news.
Tuesday I had four lymph nodes removed in a fairly simple outpatient procedure. The nurse who checked me in was kind in a way that suggested she wanted us to have questions or need something because it would have given her something useful and supportive to do. She cocked her head and made sympathetic pursed lips at us. I felt oddly giddy in my nervousness. She gave me Tylenol and a small cup of water with instructions not to drink it all, "just a sip," she said, then averted her eyes to talk to Jason while I swallowed every drop. Jason called me a sneak and once the nurse walked away, I played lookout so he could take a picture of me in my gown, hairnet, and baby blue hospital socks. They wheeled me into a large room, clean but full of information on a huge board, monitors of all sorts, and surgical implements galore. I slid myself from my bed to a surgical cot. Kind eyes introduced themselves from behind blue face masks, clinking tiny scissors and laying out scalpels.
"Ok. Now I want to be relaxed, please. Really fast, please." I gently but urgently implored the anesthesiologist.
I woke up itchy, foggy, thirsty, talkative, and with four fewer lymph nodes than I had earlier that day.
I have had conflicting senses about the nodes. On some level, I could not imagine having a mastectomy, radiation, then beginning the process of reconstruction at least six months down the line; it just didn't feel like a tangible reality despite its statistical probability. Still, I have attempted to prepare myself mentally for either outcome knowing that whichever procedure I would have would take place Monday.
The surgeon called around ten this morning to tell me that he had my pathology results back, that those four lymph nodes have defied the odds, which were stacked quite high against me. Roughly 70% of patients with micropapillary cancers have diseased lymph nodes, but mine - my nodes are squeaky clean and cancer-free. I shook with a huge full-body sigh of intense relief. I had no idea until that very moment how very scared I was of hearing other news.

t - seven days

One week from this very moment I will be either on, or on my way to, an operating table where I will spend between five and twelve hours depending on whether I have a simple mastectomy or a mastectomy and reconstruction. I should be home between Thursday and Saturday.

This afternoon we head to Ann Arbor to begin the lymph node extraction process which starts with two shots of nuclear medicine being administered today followed by quick outpatient surgery tomorrow morning. I should be home by tomorrow afternoon. The nuclear medicine is used to track the lymph nodes, the node or nodes containing the most medicine will be removed and analyzed tomorrow.

I feel like this surgery is a sort of proving ground; how tough am I? I know I don't need to be tough or prove anything to anyone, that the grounds and the proof are only for me. Still, I feel compelled to be the strongest post-mastectomy patient the world has ever seen. Mastectomy. Mastectomy. The word feels foreign. The whole process feels surreal. I'm pretty sure this is not my life.

When I was 9 we went to Disney World. Nearly all of the other kids I knew had already gone and having a couple of Disney fans for aunts, I had long been fed the movies and books; this vacation was an exciting prospect. I also grew up quite poor and the idea of going to Disney World had been far outside the parameters of my single mother's tiny budget for my entire life, so Orlando and it's cartoon wonders were comfortably seated in someone else's reality. I remember packing up the car and leaving impossibly early - still dark, cold, dewy. My mom asked if I was excited and I nodded sleepily, but the truth was that there wasn't an ounce of excitement in me because it never felt real. I could not begin to imagine our arrival in Florida - a place that seemed so exotic in my untraveled Midwestern mind - and since I couldn't imagine it, I couldn't muster the appropriate feelings. At some point between Ohio to Florida, I woke from my backseat slumber, sat bolt upright and shouted, WE ARE GOING TO DISNEY WORLD! I got it. We were far enough from home for it to sink in, on our way, destination ahead, no going back, and suddenly I could picture it. The butterflies and giddiness took hold and I am sure I spent the rest of the trip bouncing unsecured around the backseat of the car. We stopped and filled bottles with ocean water, passed groves of grapefruit and oranges, read highway signs for places with names I'd read and heard on the news but never been so close to - exciting names like Tallahassee and Miami. And eventually we arrived in Orlando.

Now, I don't think I'll have the same emotional reaction to finally recognizing that the surgery is happening as I did to finally realizing that Disney World was within reach of my eager little hands. But I do think that the recognition will take as long to set in. I can't clearly picture the hospital, me in a gown with an iv stand, nurses shuffling quickly around, Jason and my mom hovering near me. I can't picture the aftermath because I do not yet know what it will be and perhaps it is this - the up in the air nature of the planning, waiting, and adjusting period, that keeps me from being able to see it - but until I can, it just doesn't feel real. I keep wanting to remind everyone that I do not feel sick. That's the strangest thing about cancer - it isn't the disease that makes you feel sick early on, it is the treatment that does you in.

But for now I will take the next week one day at a time, hoping all the way for lymph nodes free of cancer. 

frankenbuttboob - worst post ever?

I don't think I'm too broken up about losing my breast, but I am unnerved about the change. I'm not quite sure how to explain. It's just that this body is going to be really different and that my physical existence -this bodily home- will not be the same and I'd just rather not have to do it. I get that it's all for the greater good and so on, so we're covered there; I am not arguing against having the surgery in any way. But it's like someone barging into your house one day and saying, "Hey, uh, we're going to have to take part of the kitchen and put it in the bedroom - not the whole thing, just the cabinets, maybe small appliances." (I am the queen of bad cancer metaphor) Well, I don't fucking want my kitchen in the bedroom (ok, I'll be honest, maybe I kind of do...at least a coffee pot and a toaster - how dreamy would that be? but back to my very serious metaphor). The kitchen in the bedroom? Why would we do that? Oh. Because if we don't the whole house will crumble, huh? Well, then, put the fucking kitchen wherever you want. Except this isn't my house - it's my body. I am both the kitchen and the bedroom. I feel no compulsion to rearrange any of it. I kind of hate the idea of plastic surgery to begin with (I'll discuss my misgivings about having reconstruction at all another time) and here I am signing up to do some serious Frankenstein-ing of my very own self and, well, I just hadn't ever made plans for putting my ass on my chest. It's alarming, but I don't want the whole thing to crumble, so here goes.

Tasteless things I joke about with regard to reconstruction:

1. For a while I will not have a nipple. Fortunately there are mail-order 3D rubber nipple stickers. I like to think about getting them and just always putting it in a slightly wrong spot, a little too far inside or outside where it ought to be.

2. I told Jason that if I were to purchase said stickers, he would have to wear one on his knee for a day. There is no logic to this deal I struck on his behalf because neither of us feel strongly about the nipple stickers in the first place. I just like to think of silly things to do with them, like sticking one to the bottom of a restaurant's coffee mug.

3. Call myself frankenbuttboob.

4. Day dream about asking my plastic surgeon for a third nipple or calling the insurance company to ask if it would be a covered procedure. If I were just a little more outgoing or bored, I would definitely make that phone call.

5. Frequently feel compelled to ask people if they want to feel the tumor like showing off a bad bruise or impressive scar. I think this makes official that in my mind, this breast and intimacy have become thoroughly detached. Also, I puzzle over it fairly often, wondering what it looks like and if it's changing, and tend to assume that everyone else would be so weird and curious as myself. 

Schedule of events

8.17: Pre-op visit
8.20: Nuclear shots for sentinel lymph node detection
8.21: Sentinel lymph node surgery
8.24: Pathology report due re: is there cancer in the lymph nodes?
8.27: Mastectomy or mastectomy + reconstruction, 3-5 day hospital stay

The lymph node dissection a simple outpatient procedure, but it is the beginning of a rapid progression to the Big Surgery and as such I get butterflies thinking about it. There's just so little time between finding out exactly what the Big Surgery will be and going ahead with it, which is probably a good thing, but it has my mind all in a tizzy right now. We should have the pathology results from the node dissection on Friday the 24th. Monday morning bright and early, I go under for either a mastectomy and axillary lymph removal (this means they will take out more lymph nodes if it turns out that the sentinel node contained cancer cells; the number of nodes they take depends on the number and size of the cancer cells present in the sentinel node), or for a mastectomy and reconstruction. Two days. Two days to let that settle in. That isn't enough.
My family keeps calling and keeps asking me to visit or if they can visit. I could spend an entire day returning their phone calls - and I should - but I can't seem to work up the will to sit on the phone for that long, saying the same things over and over, putting on my game face, telling them I feel great about the surgery.
I don't.
I'm terrified. I've never had real surgery. The closest I get is having had a tonsillectomy when I was 8, which was also the only time I ever stayed the night in a hospital. Just thinking about all of it makes my wrists weak (it's a little hard to type right now - no joke). I feel like in the last few posts, this blog has taken a serious nose-dive in terms of my attitude. Sorry y'all. It's just that the closer we get to this big deal surgery, the more I am having to reconcile the fact that it has to happen because the thing growing inside of me is deadly, and as strange as it may seem, I have done very little reckoning up to this point with my own mortality. The idea that I was a candidate for a lumpectomy was comforting, even if I wasn't sure I trusted it. Lumpectomy (to me) meant less dangerous, less life-threatening, closer to that root canal ideal. Mastectomy, grade 2, minimum stage 2 disease, well, it's scarier.
I know I'm not dying right now. I know I can have this surgery, hormone suppressant therapy, chemo, etc. and be ok for a good long while. I have known that from the first day; it is important, reassuring information that allows me to think of the future, to plan for pregnancy, to keep applying for jobs, to pretend that next summer we will have enough money to take the vacations we meant to take this year. What I can't seem to get over is this recurring internal monologue, "CANCER, huh? This will not, but has the capacity to, kill me. There is death in me. Fuck." Or maybe I'm just doing this again but it still feels new because the prognosis is scarier than it was a couple weeks ago and because no one could ever get used to being able to touch the mass through your skin that would kill you were it not for a series of fortuitous accidents.
Jason and I were talking the other day -perhaps morbidly, perhaps gratefully- reviewing our good luck in having insurance and finding the lump in the first place. He asked how long I would have lived if we hadn't had this good fortune. How long would I live if I hadn't found it or hadn't gone to have it looked at? The answer: 3-5 years.

hangman

This story is a work in progress about our first visit to the Cancer Center.

            Doctor French talked a lot, in kind tones and with a gentle air. She didn’t have much to offer us in the way of a plan forward, which I suppose explains her apologetic demeanor. We were supposed to be meeting with many doctors – The Cancer Team – as I’d been calling them, but the day before the meeting, the sky had come crumbling down around our feet. Again.

            The first time it fell was just nine days earlier, in a brief conversation with the PA from our brand new family doctor’s office.

            “Sara? This is Joy from Dr. Dallas’ office. We need to schedule an appointment to go over your pathology results. Can you come in tomorrow at 10:40?” She said it brusquely, in a way that should have made clear the gravity of what she was about to tell me. Maybe I knew already. Maybe I needed to hear it.

            “Yes. I—What are the results?”

            “Positive. We’ll see you in the morning.” And with that, she hung up. Before I could say anything. Before I could scream or start crying or muttering ill-formed questions about “what next?” Before no no no no no could start tumbling from my quivering lips.

            Jason was home in an instant. We cried and held each other so tight we might have fused together. We smoked cigarettes we promised would be our last.

            I had an mri. I had my blood drawn. I scheduled appointments and we waited. We got a terrifying phone call. The mri results were troubling and the radiologist wanted to do more biopsies. We sat in the same waiting room as we did on our first visit, talked to the same nurses, but this time I cried – big, hot, endless tears. We agreed that the only news worse than cancer was More Cancer. The nurse left us alone in the small, ugly room. A poorly frosted tulip was fading in the corner of a mirror framed cheaply in brass. A mess of twigs, ribbon, and silk flowers adorned one of the walls. A dated end table held an abused silicone breast embedded with plastic and rubber models of different cancers, a copy of Readers’ Digest, and a box of tissues. A calendar comprised of photos of the ugliest kittens we’d ever seen hung next to the door. Jason lifted each page as I sat weepy and pouting, making fun of their malformed faces and alien eyes. He scrawled “Jason’s birthday” in the box for August 13^th at my juvenile pleading and I laughed like we were twelve and making prank phone calls. I snapped at the doctor when she finally came in to talk to us about the biopsies and when she left I fretted pitifully to Jason about whether or not I had been mean.

            I selfishly forgot to ask how he was doing.

            The day after these new biopsies was the day we were to meet with The Cancer Team, but the Team abandoned this plan because there could be no Plan while we were waiting to find out if there was More Cancer. More Cancer changes everything. Still we talked, asked questions, waited, until finally we came to a series of equally possible if/then scenarios. It was more of a brainstorm than pathway, but it was something – a buoy many miles away, but there nonetheless.

            “Before you go I’d like to get some blood work and a chest x-ray.” Dr. French explained. Afterwards I had questions about why, but I have come to assume that every doctor wants blood and images of my insides. A nurse whose name I cannot remember came in, gave us a form explaining that Dr. French hadn’t really been able to tell us anything and said she’d walk us to our next destination. Her skin was tan and slack, with vertical wrinkles as though it had been pulled in opposite directions from her scalp and her toes. Her jaw seemed somehow narrower than her neck where the two were supposed to meet. She was kind in a way that indicated that she was waiting for me to fall apart, that she was used to it. I cannot remember if we talked while she took us to elevator and down one floor to a large lobby strewn with ugly, straight-backed upholstered chairs. The chairs lined the perimeter of the room, jutted out in two places where they were set back-to-back, interrupted only by windows, a sofa situated in front of a television broadcasting Dr. Phil or some such nonsense, and a large aquarium where fat cichlids lolled in the water. Nearly all of the seats were full. Two small children had accompanied their grandparents; otherwise we were the youngest people in the room by decades.

            I studied the other patients. They were wrinkled and moved slowly, wore ace bandages and gauze around iv ports in their forearms. The men’s baseball caps were too big for their bald heads and their legs protruded like thin, weathered dowels from the wide bottoms of their pleated shorts. They dressed in pastels, khaki, and loud floral prints. They smelled like cheap aftershave and perfume, like aging, like the hospital, like illness. Treatment for these people, I thought, is about staving off death which had already begun to infiltrate their lives. It had already birthed aches in their brittle bones, painted liver spots on the backs of their hands, pushed and pulled until their spines started to sink and tip forward at the shoulders, stolen memories, dulled the sensation of their ear drums, toyed with the rods and cones in their eyes.

            I do not belong among them. I am young and relatively wrinkle-free. My infected breasts are still pert and dense. My skin is elastic and taught. Nothing in my life has ever proclaimed the nearness of death, and suddenly I am sharing a predicament with these people. The smell makes me think of visiting my grandmother in the hospital and of her funeral where I threw up from sadness and stress. Makes me think of aging, of death, and a void opens in my abdomen that swallows my stomach, my heart, the air in my lungs and I want to scream because I very suddenly realize that I am Too Young. Because I have only been married for a year. Because I haven’t had children or gotten the job for which I worked so hard to be qualified. Because Jason and I haven’t gone to Greece and I have said no too often when he wanted to have sex. Because I have been unromantic. Because my mother will be lost without me. Because I do not want to die.

            All these thoughts are circling my brain at high speed but I can’t say a thing and I utterly lose my composure. Tears are flowing hot and fast and I cannot wipe them away quickly enough to stop them from dripping off of my jaw and onto my collar bone. Jason is looking at me – his enormous brown eyes wide and wet with concern, his arm around me. I wish I could explain, but the only thing that comes out when I open my mouth are big hiccup-y sobs, so I try to keep my mouth closed because how dare I? How dare I lose it here - in the face of worse predicaments? Also, this is embarrassing. This is weak. They all look so composed (or maybe that’s resignation?).  My efforts to stop myself are fruitless, as are my efforts to find an exit. There is no bathroom in sight, there is no separate lobby, no exit door (we are on the second floor), only the elevator, but I cannot leave because I am waiting to have an x-ray and blood work.

            Jason doesn’t say anything, just uses his free arm to pull out his notebook – the one he brought to take notes while the doctor was talking – and open it to a fresh page. He makes a “7” with a line at the base, perpendicular to the straight back of the number. He makes a smaller line dropping down from its far left tip, begins making a line of horizontal dashes next to it. Hangman. I am sobbing at the Cancer Center and everyone is looking at me and my husband is setting up a game of hangman. It is a habit of ours to play when we are waiting at restaurants or for car repairs. Ok, I think. I can do this. I can guess letters. But I can’t. I cannot say a word, or more precisely, a letter. Every time I open my mouth to speak the only sound to make its exit is a low wail, but I try until I am laughing at my failure to utter coherent sounds, and until he guesses for me.

            He writes a ‘W’ off to the side, looks at me quizzically; this is a bad first guess. He crosses it off and draws a head on the noose. He is making me lose. I laugh a little more, try and fail again to guess a letter. He writes a ‘Z’ next to the ‘W,’ looks at me like I’m crazy because this is such a terrible second letter to guess, shakes his head and crosses it off. He draws a body for the poor hanged man. He is smiling mischievously and his eyes are all teasing expectation – eyebrows raised, chin tipped down, head gesturing “guess!” I am still bereft of voice as he records an ‘X,’ crosses it through like the other letters, and gives the stick figure a leg. My sense of competition and his tactless humor are winning me over from my tears. No, no! X? Fuck you. Who guesses X third? E! E! I want to guess E! and so I finally sent it sputtering through tears and snot, muffled sobs and wild laughter, “E!"

dreams

I have a recurring dream. More accurately I have a series of dreams that revolve around a shared theme - finding Jason a new partner.

Sometimes she is a sexual partner, unrealistically hot, adventurous, sexy, with breasts that will never be remade out of her ass. Sometimes she is old, grandmotherly and nurturing. Sometimes she shape-shifts, switching rapidly back and forth between these two frames. (Archetypal much, subconscious o' mine?) On occasion, I am part of the shape-shifting. Most of the time we are shopping, perusing supermarket shelves that are stocked with attractive, kempt women where one ought to find bags of dried fruit and granola. Jason does not usually notice them. Oblivious to my unusual search, resting one foot on the brace bar at the bottom of a cart and pushing himself along with the other, he is happy. I am frantic. I stop regularly to ponder women as they sit - smiling though contorted on grocery shelves that cannot accommodate their height - happily talking to each other. what about a red head? blond? did he ever date any blond women? maybe alison had blond hair. where are the descriptions of these women's musical tastes? education? interests? positions on religion? politics? do they eat healthily? we can't have someone who eats like him - he'll never eat any vegetables. shit shit shit. He whistles, picks up a box of Raisin Bran and tosses it into the cart, a jolly dream grocery shopper. A slender brunette in a sweater set introduces herself. She is remarkably pleasant and all wrong for him. I run away from her before Jason realizes what I'm up to. Although it is at this point in the dream, while he glides to the end of the aisle and I stand - anxious, torn between following him and interviewing more suitors - a few yards behind him, that it occurs to me that maybe in these dreams, I'm not actually alive.

I very rarely think this sort of thought while I am awake. I do not feel haunted by these strange dreams, though they are unpleasant as they happen. Maybe this is a way of getting these thoughts out of my system.

Last night over dinner Jason and I talked a little about my surgery. I said something sarcastic about it and he said (roughly), 'it's a great anniversary. you get to live.' So here's to celebrating our first anniversary by making sure there will be many more of them to come.

August 27th

The twenty-seventh of this month in mine and Jason's first anniversary. My family so thoroughly loved our wedding they have requested over and over that we rent the camp at which it was held for an anniversary party. Without the hassle of the chairs, linens, dishes, etc., - I'd love to. That day was pure magic.

I had high hopes for romanticism on our first anniversary. You see, Jason has an incredible memory for dates while mine is awful, which may make me an odd historian, but so it goes. Every year Jason makes note of commemorative dates - first kiss, first official declaration of relationship, the day I proposed, and so on - that to my mind are lost to a muddy, somewhat non-linear concept of time. As far as I am concerned these events happened not on a particular date, but relative to various other milestones in our lives. We joke about how I am likely to constantly forget our anniversary. While we make these jokes, I hope that it is prepping him on some level for that eventuality and the disappointment it will bring. So at least for the first one, I wanted to do something great, some series of sweetnesses to account for our funny decade-long, interrupted but unavoidable trek to this point, something to celebrate the length, durability, and beginningness of us.

This year on August 27th, I will be quite unable to do anything at all. For our first anniversary, I will spend the day on an operating table.