holidays

Holidays are hard when you're not waffling in this weird state of mixed gratitude and frustration, when everyone is getting along and healthy and happy, when there is enough money and time to buy and make all the gifts you'd really like to give, when the weather does what it ought to do and sets the mood for the season. When any of those things are out of whack, it gets hard to find the spirit for christmas. It just didn't feel like it was ever actually going to happen, but it happened and in spite of my lack of christmas enthusiasm, it was nice to spend time with family and friends visiting from their far-flung homes. Sitting around a table last night I laughed more and harder than I have in weeks, maybe months. Thank you for that, friends.

Today I spent a substantial part of my evening looking up plastic surgeons. I am doing the slow, strange, mental work of giving myself over to the reality of my reconstructive option - an implant. Three months ago I hated the idea. Now I'm looking at surgeons' portfolios, assessing their skill, checking their credentials, and doing it all without crying or feeling sorry for myself. That's a big deal. In a way, to accept that an implant is what is available to me (given that I opt to have reconstructive surgery instead of wearing a prosthesis every day) is to accept what happened in September. I've struggled to accept that that tissue transplant failed inexplicably, as in rare cases they do. But to really take that in, to swallow it up and make it part of me, I have to acknowledge that it is unsafe, ill-advised, and unpredictable to think of reconstructing my breast with my own tissue again, which means that my plans for achieving normality post-cancer are shot to shit. It also makes my body feel unreliable which is pretty much the last thing I wanted to feel while fighting the mutation of my very own cells that could have killed me. Implants don't last that long and so will need to replaced at least once and likely more than once, which means that breast surgery is set to be a part of my life for good and I'm not crazy about that plan. So it goes.

I finish chemo on January 30th. A month after that I'll be cleared to start reconstruction which begins by having a balloon-like sack inserted under the muscle on the chest wall. Once that incision has had a month to heal, I'll go in for weekly-bi-weekly saline injections to fill up the tissue expander and stretch the breast mound which will probably take about six weeks. Once the skin and tissue have been stretched to the appropriate size, it'll be given a few weeks to settle at which point I'll go in to have the expander removed and replaced with a regular implant. From everything I've read, it seems like it could be a three to five month process just to get the implant in place, which is hopefully but not necessarily the end of the reconstructive surgery. It's a short time in the long-term, though that's sometimes hard to remember when the end looks this far away.

Tomorrow is new year's eve. I've never been so ready to say good bye to a particular year.

the hard part

I apologize to anyone who reads this, or hopes to read it, with any sort of regularity. As I've settled in to the routinized, slow portion of the cancer ordeal, I find myself having less to say about it. Scratch that. That's not accurate; I've got plenty to say and all sorts of things going on in my head re: cancer, but it's more difficult to process. Lacking events to report on means that my writing needs to draw almost entirely from what I'm thinking and feeling and there are a few issues with that. One, it's harder. Way harder. Two, it's intimate. There are some things I can't find my way through and I'm not sure all of you, or any of you, can come with on that journey. Three, it's more complicated which means the writing and sorting out is more demanding and most days it feels daunting to think of sitting down to write when it takes so much out of me just to get through a full day of work, or an empty day that begs filling with anything but time alone with my thoughts. Finally, it's repetitive. If my thoughts feel repetitive to myself, they'll surely be so to you. I think going over and over things in my own mind is part of the process, but I don't know that you all want to read variations on a single entry over and over. That said, this is sort of where my head's been of late...
The lump in my throat is persistent, an emotional weight and a distinct physical presence - a pill that lodged itself in my esophagus a week and a half ago and will not budge. It fuels the ever-present nausea, a mild irritation rising each time I swallow, the rippling of my esophagus pushing against the lump. There is a stomach-churning medicinal smell, acid, metallic, chemical, that arises unannounced -a rush to the olfactory system, swift and profuse- triggered by science classrooms, tomatoes, soaps and surface cleaners, the clean dish-soapy smell of recently washed glasses, and occasional fruits. It catches in my nose and throat, pungent, heavy, and hard to place. The odor comes from the infusion room, some combination of the port flush fluid and hospital grade cleaning products. I wish it would stay there. Jason cannot smell it even as we sit in the room together while I get my treatment. During our first visit, I could not smell it either.
My appetite returned with a vengeance a few nights ago as I readied myself for bed, sweet relief after having consumed roughly 1,200 calories over the course of three preceding days. Exhausting, sick-feeling days when my stomach both craved and rejected the nourishment the rest of me needed to will myself off of the sofa. I threw up for the first time. Lucky, I know. I really do know how very lucky I am, but at some point the source of gratitude starts to run dry. Whether or not this could be worse, this is my present. my life. and it kind of fucking sucks. It's taxing and depressing even to be a fortunate chemo patient.
As I come to the end of this set of medications and prepare to switch to to one single medication that promises to be easier on my system, I find I am emotionally conflicted. At once I am aware that I ought to feel nothing but relief - the situation which has not even been that bad is about to vastly improve (save the disappointing, if minor, side effect of losing my eyebrows and eyelashes), but what I actually feel is a sort of desperation. that I might crack at any moment. that in the face of the anti-climactic shift beyond the chemotherapy halfway point which should be a celebratory moment, all I really want to do is hide in a puddle of blankets and weep. In absence of the sense that I am or could be dying right now it is easy to lose track of why this is happening, why I chose it. Fear of death is too far off to inform my emotional reaction to chemo. Because I'm not dying now. So I'm not afraid of that. The fear that paralyzes me is one that no one can answer to - that this will come back and kill me in a five years, in a decade, at some sad mid-life time. Maybe this medication is stopping that from happening. Maybe it isn't. My sense of purpose wanes. Why these days sick and lonely, this burden to my family and friends, this financial stress? It is difficult to picture the future for which I am fighting when I feel so thoroughly wedged into an overwhelming, painful, present. Harder still when it's the things that future could hold that both give me hope and scare me senseless, so I try not to think much about it.
I can't figure out which is better: to feel this, the middling frustration and mental brittleness, the vague purpose and pervasive loss, or to perpetually remind myself that otherwise I might die from this disease. Which fear is greater? more damaging? more productive? more healing? more real? I wish I knew.

sleep calls

There's something infantilizing about feeling this tired, and something reminiscent of pregnancy to feeling this smell-sensitive and nauseated. It seems I either spoke too soon or posted too late about the duration of the side effects - they're sticking around. The fatigue held lightly to my schedule in between the last treatments, but its grip is intensified this time around. Sunday I managed to rouse myself for a trip to the grocery store, returned to wash and chop fruits and vegetables, then made some muffins. All told, three hours of doing simple activities and it sent me graciously to the sofa for a two hour nap. I don't like sleeping so much. I have the sense of not being able to keep up and I suspect I felt the same way as a child struggling to stay up as late as the grown-ups. I am also reminded of my father, who spent family visits snoring in the living room, who slept through our plans over and over, who seemed to sleep through much of life in the first two-thirds of my life. I realize this is a temporary state of affairs and that I haven't slipped into a anti-depressant-addled free for all of unconsciousness, that this is a need my body has right now. But it feels so strange, as if my body is demanding that I drop out of my social life. And it's lonely, being tired like this.
I also feel a little spacey which is why this post is ending abruptly. It felt like there was something i wanted to say when I started writing...

patterns

This morning I woke up at 5:30, some combination of fierce thirst, and urgent need to pee, and powerful wind whipping around the house, knocking at the windows and shoving the doors. I often wake at least once in the night to guzzle a large glass of water and use the bathroom -things a nurse recently told me are healthy habits, all that drinking and flushing prevents this toxic medication from taking up in my kidneys for too long, corroding them. I managed to get back to sleep after entertaining notions of drinking tea and watching a pleasant sunrise, which turned out to be just a brightening of the dark gray sky, the sun rising in some indistinct place behind all these clouds. It is a gloomy morning.
Despite what my long absence from the blog may indicate, chemo isn't so bad. It follows a pattern:
Day 1 (Treatment day): fatigue, mild nausea
Day 2: less fatigue and nausea than day 1
Days 3 & 4: extreme fatigue, persistent but pretty mild nausea
Day 5: mostly normal
Today is day 4 in this most recent cycle, and true to the pattern I went to bed at 8:30 last night after having taken an afternoon nap and slept in until 10am. Past day four the fatigue sticks around in a gentle way, urging me to bed early, sapping energy I might have for Christmas projects, shopping, or sewing. Still, I manage to keep my routines and obligations. I work on my normal days, concealing my baldness beneath a wig that makes me feel nervous, like I might be found out at any moment for this hair charade.
Monday evenings I volunteer with the local youth advisory council, though it seems almost dishonest to call myself a volunteer. I do so little, and I suspect I am the one who gets the most out of my participation. I hope in the very least that I'm offering them something in our discussions. The kids are in high school, tactful, timid, and supportive in their rare inquiries about my cancer. Except for one student. He has autism and I appreciate his interest the most. Without fail when I see him, we have the same brief conversation that makes some of the other kids uneasy, their manners dictating that one ought not discuss "it" too loudly or casually, despite my openness.
He asks LOUDLY, in a jubilant manner that makes me smile every time, "So, Sara, how is your battle with breast cancer going?"
"Well, _______, I think I'm winning," 
"Yessss! That's great news!"
Then, as if on cue, the other students smile, too. Because it is great news.

bones

I will be taking my chemo treatments eight times, once every other week. On the day following each treatment, I have to return to the oncologist's office to get a shot of Neulasta - a medication derived from human growth factor that stimulates my bone marrow to start producing that we may quickly replenish my chemo-dwindled blood cell counts.
It aches, this cell-production stimulator. The gears within these bones are used to functioning at a slow steady pace. They find the idea of kicking into high speed work a depressingly laborious affair, and so they move begrudgingly into the drudgery that is saving my immune system. I feel like I've just pulled them out of retirement. I am grateful for this medical magic; it guarantees to make chemo more tolerable and less dangerous than the treatments given in the past. That said, my hips and my thighs, knees and arms, ache in a deep-down, unreachable way, not intense, but persistent and unmovable. Worsening the situation is the reality that yesterday I was knocked flat on my ass with fatigue and a constant, if minor, nausea. Thursday night I came home from work exhausted, managed to stay awake until about 8:30 when I was out cold until nearly 10:00 Friday morning, barring one interruption in sleep to take anti-nausea medicine. By the time Jason got home at 6:30, I estimate that I'd managed to stay awake for all of four hours. All those hours passed in bed surely didn't help my aching bones.
I have long experienced bone and muscle pain (thanks scoliosis!), that work together creating sharp pain sensations that can often be massaged and stretched to relief. This is a different feeling altogether, mostly in that it feels, appropriately, like it is so far inside of me. Moreover, it isn't connected to a muscle pain so while my temptation is rub my legs and anticipate relief, it doesn't solve my problem.
On brighter notes, I hardly feel sick to my stomach at all, and while food sounds pretty unappetizing, I did eat a dish of fruit and some toast. I think this may be the only thing I want to eat for the next month. I think I'm even up for tentative movie-going plans I made yesterday.

Hairs countdown: 11 days. The logic behind the countdown - Over 90% of patients lose about 90% of their hair between days 14-17 of treatment using the medications I am taking. The idea of waiting for that to happen, showering and coming away with clumps of hair circling the drain or stuck to my towel, waking with tufts stuck all over my pillow, it just sounds so depressing, so passive. So I'm just going to avoid all of that sad, slow hair loss by just doing it my own damn self... at the last possible minute.

the beginning

We put the power port to use yesterday for my first round of chemo. I didn't feel nervous or scared until the  the nurse put the needle into the port on my chest which was 1. very painful, and 2. the precise moment I settled in to the fact that chemo was happening for real and I lost it for a few minutes. Not in a hiccup-y, disruptive way, but in a big hot, relatively quiet tears way. Jason is good at taking me out of these meltdown moments and even though I sort of hated him for talking the lyrics of "call me, maybe" at me, I squeezed his hand and we both laughed, a little choked up. He's good cancer company. Good company in general, but you know what I mean.
Things I learned about receiving chemotherapy:
1. Some folks who are getting their treatment are very loud, shouting everything they say and literally shouting out to nurses who are far away from them. This makes it difficult to relax in what is already a high-stress situation.
2. Other folks receiving their treatment do things like make long phone calls, leaving the automated phone system on speaker phone at top volume, which is a good way to ensure that other patients feel uncomfortable about their conversations.
3. The lights are fluorescent and too bright.
4. The thin screens that hang as dividers between patients' seating areas provide very little privacy. The seating areas all come in three-part sections, centered around a pole that houses the electrical outlets and televisions in each tiny section. The walls are actually two metal protrusions at the top and bottom of the pole, draped with a mesh screen with charming pictures of snowy evergreens or flip flops in sand.
5. The anti-nausea medication and one of the chemo drugs (cytoxan) are administered via iv drip. The other medication (adriamyacin) is administered by a nurse who pushes three syringes full of the vile looking red stuff into the iv. She does so in a hazmat poncho and gloves, which really makes receiving the medicine a lot more frightening.
6. Adriamyacin is charmingly nicknamed "the red devil," and when my nurse came by to give me my dose, the sweet woman sitting next to me who has just finished her round of a/c asked her husband to re-hang the flip flop we'd taken down so we could talk to one another a few minutes before.
7. I have to be careful about germs. I knew this, it's obvious. What was less obvious to me as my chemo patient neighbor explained necessary germ precautions to me, was just how little I ever trouble myself to avoid germs unless in a public bathroom.
I felt tired and mildly nauseated yesterday. Today I worked and mostly felt fine, suffering only a mild bout of nausea that was quickly remedied by vernor's and anti-nausea medication. I was, however, exhausted by the end of the day and am still really tired. Like, no joke ready for pajamas and bed kind of tired. So I think that's what I'm going to do.
Thanks for all the well-wishing. So far this red devil has nothing on me, though I suspect this won't be the case for too much longer.

power port

There is a port under my skin. It makes it more fun if I imagine it is some sort of machine (I am now bionic!), but really it's just four small parts, two rubber, one metal, and one bright purple plastic. It is, however, delightfully called Power Port, and comes with a purple keychain, rubber bracelet, and wallet card, all to remind me to remind my doctors and any security personnel I may encounter that I have a port -no, no, a Power Port!- which could set off metal detectors and airport scanners. I guess if I ever wanted to sneak a pair of nail clippers onto an airplane, this is my chance.
It makes a quarter-sized lump on my chest about a half an inch tall, an inch below my collar bone. There is another incision in my neck just above my clavicle that was used to guide the insertion into the vein. Wearing any shirts but turtlenecks just got awkward. Now, in addition to trying to hide the hollowness where my breast used to be, I have this strange protrusion to contend with. Oh wardrobe, you left me woefully unprepared for the days when my chest would become the site of much dismantling, removing, stitching, gluing, and implanting. I bought all my shirts with the optimistic presumption that it wouldn't often be my goal to conceal my collar bone and the rather un-sultry few inches of skin directly below it. So it goes. Cancer is rife with unanticipated inconveniences.
I recently went to the local prosthetics shop and found that the process of getting a prosthesis is less straightforward than I anticipated. First, I had to be measured. Then, I was handed catalogs full of pictures of bras that mostly look like the unsexiest, most medical garments you can imagine, many of which are modeled by women old enough to be my mother, and selected the very few that didn't look that far outside the usual purview of my taste in undergarments. "Of course! Those are the newest ones. They're really getting better about making them... more attractive," said the friendly certified prosthesis fitter. After that, I had a strange, embarrassingly tearful, conversation with her about what mattered most to me in a synthetic breast. My tears ended abruptly when she told me that losing a body part -any part- is comparable to losing a loved one. A t-chart appeared in my mind: my breast on one side and my grandmother on the other. "Oh, no. It's not that bad." And I remembered I was in a prosthetics shop, where other people went for new legs and hands, and how lucky I was to still have those really important bits. The fitter put in an order for all the bras and silicone breast forms, told me to call her if I needed anything and I'm sure she meant it in the absurdly generous way where she'd talk me out of a teary episode again if I needed it. In a couple weeks I go back to see if any of them fit properly. If yes, I get to go home with my selections. If not, we start all over again. Fingers crossed for success on the first try, though I have a new personal policy of never getting my hopes about anything ever because it doesn't pan out well for me when I do. I was even a little bummed after this appointment as my previous conversations with the kind folks at the shop led me to believe I'd be leaving with my new pretend boob that very day. FYI: A prosthetics shop just looks like a doctor's office and there is nothing cool about it at all.
Interesting discovery: I can wear my old bras, but with no breast on the right side, they tend to ride up a little over my hollow, making it a bit uncomfortable. I found that the small bead-filled hand-warmer pouch my dear friend made is a perfect weight to keep the bra in place and properly filled so that under a tank top (which sits high enough on my chest to cover the gap between my chest wall and the cup), it looks convincingly like I have two breasts that are the same size!
Back to the port. I recently learned the following interesting, horrifying fact: In rare cases, one of the chemo medications I'll be receiving can leak through a vein (as in, seep/burn through the vein wall) and cause a CHEMICAL BURN FROM THE INSIDE OUT that could require
skin grafting. This doesn't happen often because doctors administer the
medicine in water to avoid said vein-melting, but if for whatever reason
the medication isn't evenly distributed in the water, burns can still happen. It can also happen if a needle inserted into the vein accidentally pokes clear through it. More common, and way less terrifying, is the simple reality that the chemo meds are corrosive and tough on the body so when they're injected into smaller veins in the arms repeatedly, veins tend to show wear by collapsing and shrinking. The port's rubber top is a safe place for the doctors to inject the meds without having to worry about leakage and the white rubber tube tunnels the meds safely (if creepily) into a major vein in my chest! making for a more direct delivery of medication to my bloodstream with lower risk of vein damage. A doctor will just feel on the top of the protruding port for three tiny bumps that mark the edges of the rubber injection pad, center the needle in between them, and set up the iv there on my chest. Science. Weird.
I was scared heading into the procedure because they use the same combination of sedative and pain killer that was used for the egg harvest for which I was assured there that I would feel little and remember less, and that just wasn't true. I spent the whole procedure quite aware, so the idea that I would be just as aware while a tube was pushed into my vein and a doctor inserted a device into my chest sounded alarming. "Use a lot of those meds. Seriously. I don't want to be able to talk," was my repeated directive to the nurse at my iv. She kindly delivered and I woke up as the doctor applied the last of the bandages to the sound of my own soft snoring. If only sleep came so easily during the healing process...
My first chemo appointment is at 8:30 Wednesday morning. I'm nervous in a way that feels inarticulate, hard to place. 

gray days

Saturday morning we got up at 5:30 and made a sleepy, cold trek to Ann Arbor to have my eggs harvested. Groggy after the extraction, I perked up when I heard a doctor announce the tally - 26 eggs. The nurse said she'd never seen a harvest so large. I returned to my sleepy state at ease.
Just a few days prior, I'd been notified that sometimes as few as 10 eggs are harvested. As some are lost at each stage of the process (maturity, fertilization, freezing, thawing, implantation), sometimes a couple is left with only one opportunity to create a pregnancy from this whole ordeal. Being that, for us, that chance is five years from now -five years later than we hoped we'd be trying to get pregnant- the idea that our chances rested on so few embryos with such a slim chance of being taken up by my uterus on the first and possibly only shot, well, it scared the shit out of me. One chance just didn't feel like enough. And it all but eliminated the possibility of surrogacy. We talked about starting a family earlier than the end of my Tamoxifen regimen. Generous friends offered up their wombs. It seemed tempting when I had in my head that there would be more than one opportunity to implant embryos. With so few on hand, the risk seemed great that they might be lost in one fell swoop; the idea that that effort might happen in someone else's body, negating my ability to carry the kid of my own genetic making, well, that scared the shit out of me, too. I spent the days in between that appointment and the harvest nervous, cautiously hopeful.
But 26 eggs! 26 eggs undoes those fears. At least, it undoes those fears until the doctor calls and says that only six of those eggs were mature, that of those six only three were successfully fertilized, that they might not all make it through freezing and thawing. When you get that phone call, 26 doesn't matter at all, except to intensify the blow, to suck the wind from sails inflated by high hopes. It's enough to send you running from the table where you are about to share lunch with a friend to sob in the handicapped stall of a public restroom while Rod Stewart plays just loudly enough to force you to ask the doctor to repeat everything he has to tell you. "Six?! As in 1, 2, 3, 4, 5, 6? Six." And then, "Three?! Three. 3. 3?"
I am glad that that chance is out there, even if it feels so tenuous. But I'm exhausted by these let-downs. I'm not sure I can weather another. Maybe my attitude is all wrong. I just hoped that the failsafe would feel... safer.

In other news, let the countdown begin: Chemo starts one week from Wednesday.

growing things

Boy, time flies when you're stimming. That's weird lingo I just learned for folks who are medically stimulating their ovaries' follicles to produce many, many eggs for the purposes of scary needle harvesting, petri dish fertilizing, and cryofreezing for later use.
For the past week I have been giving myself shots every night, which is almost as unpleasant as it sounds. It's not so painful, but it takes me a number of big breaths to will my hand to poke a small hole in my own stomach and then flood said hole with stinging medication. That said, the worst of it is certainly my own nerves and it's all over pretty quickly. On the bright side, it makes me feel like a total badass to give myself not just one, but TWO shots every day.
The worst part of this process is that it necessitates an appointment at the fertility clinic every other day where they draw my blood and I have an ultrasound. Time spent in the office has yet to exceed 45minutes. The drive takes three hours and it's all timed so as to prevent me from being able to work.
The first day I went in for the ultrasound I was mighty proud of myself for thinking ahead. I have gotten pretty good at wearing things that doctors won't make me remove entirely. Seeing the surgeon? He's going to look at my chest and will make me wear a gown, but I can put my sweater over it if it opens in the front. Cold problem solved. Knowing we'd be trying to get a look at things that sit really low in my abdomen and that I'd be asked to at least partially undress so I could wear an outrageously over-sized hospital gown that -refusing my hard work and weird knots- would repeatedly slip open, I broke my own only fashion rule (wear real pants when leaving the house) and showed up in a pair of yoga pants. The soft, stretchy waistband designed to fold over seemed like the perfect solution to being allowed to keep wearing my clothes. A nurse led me to the exam room where a she handed me a sheet, "You'll need to undress from the waist down."
"But I wore these pants, see?" I said, proudly lifting the hem of my shirt so she could see just how very ultrasound-friendly a wardrobe selection I had made, "So I can just fold the top down and we're good, no interference with the pictures. It's always so cold in here."
"Uhh, miss? It's a vaginal ultrasound."
"..." 

So it goes. I still wear as many of my clothes as possible: knee-high socks, a sheet to hide from view the ultrasound and its probing, warm winter vest, thick sweater, scarf, and knit hat. I feel a little ridiculous wearing so many items of clothing while such a crucial one is missing; I feel vulnerable not doing so. It's interesting, if a little awkward, to study the images of my ovaries and their now-huge, black follicles, fluid-filled and plump with little eggs as the probe finds them. I ask a lot of questions. The configuration of four of the follicles looks remarkably like a skull, down to a small triangle where one usually finds two nostril openings (which didn't seem ominous until I typed that - good thing my superstition is only residual from a childhood of Catholicism and more enjoyable ghost stories). My ovaries are hormone-inflated giant versions of their usual selves. I can feel them, just a little.
Tonight I will switch up the medical routine, moving on up from follicle stimulants to a maturation trigger. Saturday morning we will head to the clinic for the last time until we're ready to give pregnancy a go and the doctors will get our gametes together to make sweet science on the 10th anniversary of the first time we decided to date each other. Romance.

helping

Paperwork intimidates me. Filling out forms, keeping track of dates, following nitpicky instructions – it all makes my eyes blur. When reading something technical and detailed, I lose the ability to focus my eyes, a curtain drops in the space between eyeball and brain and I have to repeatedly start over. I am precisely the person you could swindle with a contract. I get hung up on the questions which are always too straightforward considering that the circumstances never are. “Were you unemployed before your diagnosis?” Yes and no; I went in to work on the day I was diagnosed because I had work to do, but I was not paid because the last day of the school year was three days prior. I had work in the Fall, but I did not work during the summer and filed for unemployment two weeks after the date of my diagnosis. So was I, or wasn’t I? No? I think the answer is no.

I try to spend some of my days looking for assistance. It is a nightmare. I cannot tell you the number of sites I have visited for various patient advocacy, co-payment assistance, debt-relief, and direct bill-payment support agencies, painstakingly reading their qualification guidelines, only to be told that they are all presently out of funds for breast cancer patients. I have learned that it is the practice of these agencies to compartmentalize their funding, so that if I had bladder cancer or lymphoma instead, I might be eligible for funds; those accounts have not been tapped by patients more savvy or proactive than myself. Or, more accurately, those funds are larger and are rightly set aside for the targets of deadlier diseases.

Jason tells me not to worry about the money. He tells me all the time because I worry about it all the time. But it gets to me. A few months back this cancer popped up and I handed him a heavy burden – to support us both financially, to keep track of our finances and pay the insurance and hospital bills as they came, to be sturdy when I was not, to waylay his educational plans – and it is a burden he has borne admirably, carried as though it were a lighter load than it really is. Cancer was like the abrupt stop of our train engine, each car hitting the one before it with the heavy thud of its own inertia stopped. Meanwhile I have navigated the appointments; kept track of my care; read about cancer and nutrition and side-effects and doctors and surgeries; gotten depressed and spent more than a few listless days wondering what the fuck happened to my life, feeling sorry for myself on the sofa over chemotherapy studies and statistics and episodes of Northern Exposure. I burden him further by seeking praise or assurance whenever I accomplish some minor task: “I vacuumed and paid the water bill out of my savings account! I took out the trash and the recycling!” as though there is something miraculous about accomplishing tasks, in the plural. They are declarations always met with happy encouragement, and tempered by an internal, “congratufuckinglations.” I am a regular Donna Reed. That being the circumstance, it hits me hard when I try to be proactive, to find a way to bear the burden of the cost load, and I can’t do it. The frustration is immense. The train is long, the collisions keep coming.

There are other days, like Tuesday where nothing happens but I still manage to spend the entire day on the phone going back and forth about prescriptions and who has which form and why U of M staff failed yet again to properly handle very important paperwork with a very important deadline. Suddenly a day has passed and the only thing I’ve done is get one prescription ordered and see that someone will call me back within the week about more tests. How, I wonder daily, does anyone do this alone?

Ah, cancer, my personal, wretched little earthquake.

Tomorrow I work. I haven’t been so excited since we were vacation planning.

adjusting

Since the first surgery I have felt like a foreigner in my own skin. It has horrified to me know that just a week ago I lay, skin open on an operating room table while a sterile, stainless nozzle washed away what couldn't be scraped, an abrupt push of fluid coursing over me, antiseptic. I have felt vulnerable and damaged, like confidence and sexuality were flushed from my system with so many bits of ruined tissue. As though those things were located in a particular place-- not in some sense of vanity about my body, but in it's relative normality, in the simple, predictable, reality that all the pieces were there. 
I was so sure I wasn't that attached to my breasts, but now, as I contemplate this unbalanced physicality, I cannot but think how, as little as I may have liked my them, as little as I thought of them, they lent me at least a little of the stuff of womanhood. It would be easier if it weren't just one missing. The severe asymmetry is something in and of itself to contend with.
I once imagined that after a mastectomy, the chest would be flat, as though the only thing cut away was the protrusion of the breast itself. In reality, the wall of muscle that wraps around ribs is scraped, muscle and fat pulled from the collar bone to the shoulder, just inside the armpit, and across to the sternum, so what is left behind is concave, a palpable gap, a shallow sinkhole. This was all done as the first step of my first surgery. The reconstruction then filled in the empty space, or at least most of it. Last Monday was the undoing of the reconstruction, a step back to square one.
My v-neck shirts hang, skewed in such a way that the entire collar lies too far to the right, exposing sometimes all, sometimes just the outer edge of the concavity. This is a difficult adjustment. Still, something about it looks safer, cleaner, less damaged than what held its place so recently. In that way, it is easier to interact with my body in ways I once took for granted, mostly showering, and dressing. Still, the absence startles me on occasion, as I sit holding a book open and reach across my body with my free right hand for the cup of tea steeping on the end table to my left, when I turn onto my side in bed and my arm slumps, crossing over me on it's drop toward the mattress.
For now, I have finagled a temporary solution that makes it easier for me to be out in the world, minimizes the sense that my body is a sideshow spectacle.
Strangely enough, for all the difficulty these repeated adjustments have brought, I'm finally settling in. At least at this point I know what's in store.

Let the chemo countdown begin. 

loss

The scene: I am sitting on the lid of the toilet in my underwear, nervously running my sweaty palms over and over my knees, crying, while Jason stands, trying to comfort me, as we prepare to remove the bandages over the new scar where my reconstructed breast used to be. My new surgical drain hangs from a lanyard around my neck. I am sad, the sort of sad that comes from your bowels, that makes your legs feel leaden. I am still in shock. How did we get here?

Monday afternoon I went to the plastic surgeon's office to meet with a PA for a simple check up. A week prior I had gone in with fears that I had a mild infection. Since the signs of infection were no more and the transplanted skin looked the same (according to Jason, I never quite got to the point of being able to look at it myself), I assumed this was a quick appointment that did not necessitate Jason cancelling his dentist appointment and making the trek halfway across the state with me. I am an adult, and this appointment is of the easiest variety. I went alone.
At about 3:30 when the PA came in, he looked at the breast, prodded a bit with a sterile q-tip, and matter-of-factly said, "I can't tell if it's just the top two layers of skin that are dead, or if it's all of the tissue. I'll give you a prescription and you come back Friday when your surgeon will be in the clinic. Today he's in surgery." And my blood began to buzz in my head, my breath came fast and shallow, and I responded with quivering voice and eyes welling up, "You can't say that and then send me home. There are other doctors here. I want one of them to look at it. I will wait, but I'm not just going home." Amidst all my powerlessness in the doctor's office, as I lay back on an exam table, my possibly dying reconstructed breast unveiled from my papery hospital gown, I had made a demand and the PA took me very seriously, nodding as he left saying he would see who he could find.
He returned shortly with another plastic surgeon, oddly the first one we'd spoken to back in July when we arrived at U of M. At that meeting I disliked him. Among his first questions were, "What size would you like to be?" and when I said I'd like my breasts to stay the same size, he reacted a little dismissively. Monday, however, Monday I was floored by his kindness. He did the same prodding with a q-tip that the PA had done, but he reacted with urgency - leaving the room to call my surgeon, Dr. Momoh, actually pulling him from the operating room to ask about me. He returned, looking somber, as I suppose one does when a case looks serious enough to pull a surgeon from the operating room.
"We need to get you over to the main hospital for exploratory surgery to find out what's going on inside because what we can see on the outside doesn't look good."
I lost it, melted down right there on that fucking exam table in that fucking gown.
"Who is here with you?" His voice was gentle, one hand firmly on my shoulder, the other offering tissues.
"No one."
"Wow. You're tough."
I didn't feel tough. I explained that it was meant to be a check up, that my husband was at the dentist having a tooth pulled. He helped me off the exam table, into a chair, and crouched in front of me, how you might seek to make eye contact with a child. "I don't think you should drive right now. I think your car will be fine here, I'll talk to security about it. Call whoever you need to. I have to see two patients quickly and when I'm done with that, I will take you to the hospital myself. I'm headed there anyway."
So I set about making phone calls to Jason, to his mother because I couldn't remember the name of the dentist and because she was on call to drive him home if he was too groggy.
Meanwhile two nurses came in to wait with me. They talked about inane things that served to mitigate how hard I was crying. "Just remember," said the nurse with dark brown, feathered hair, "everything happens for a reason." Fuck that. Worst possible time to say some trite, semi-religious, nonsensical bullshit. What, exactly, is the reason for this? Because it wasn't hard enough when I had to go back in for more surgery two days after the main ordeal? Because it wasn't enough that the main surgery lasted four hours longer than it should have? Because I still haven't learned enough about loss? Am I too vain? What?! I wanted to scream, is the fucking reason? None, of course. These things just happen sometimes. I hadn't the energy to respond to them.
I talked to Jason. Talked to Sally. They were on their way. The kind doctor came to get me, and we drove. A pretty drive, past colorful houses and their lovely gardens, down tree-lined streets, the sky vibrantly blue, sun shining brightly.
"So your husband's on his way? I hope he isn't driving having taken narcotics. How long is the ride? He'll probably be here in less time than that, huh? I think a lot of men speed."
"I actually have quite a lead foot myself."
He nodded approvingly, "Good for you."
I thanked him for driving me to the hospital, and he said wisely, "I have learned that there are a few times in life when you just shouldn't drive. After the phone call when you learn you have cancer is one of those times."  He trailed off a bit, "I don't remember that drive at all." And we talked quietly about our respective experiences finding out that we had cancer. He talked about being angry, how it's so consuming, how it's temporary in the low stages.
He walked me to surgery admitting, wished me well and left to attend to his own patients. It was 5:00. I frantically sent text messages giving Jason directions to the waiting room, letting my mom know what was going on, filling out consent forms and forms identifying Jason as my power of attorney. at 5:30 they called me back to pre-op. A nurse who looked like a high school student waited impatiently as I scrawled a note for Jason, reminding him (unnecessarily) to see that his brother could go to the house to watch the dogs, telling him, "I love you. and I'm scared." Which, as soon as it was on this post-it seemed like a mistake. What if he gets here after I've already gone into surgery and he just has this note that says I'm scared? That would feel awful. I added a tiny "eep!" to keep things light.
I talked with my surgeon who looked disappointed, who rubbed his forehead and gently handed me a gauze pad instead of a tissue when I started to cry as we talked about being realistic, about how the transplant tissue looked bad, about his PA who was going to send me home until Friday. "He what!? That's unacceptable, just totally..." and the surgeon catches himself - keep your medical criticisms to a minimum while at the patient's bedside. Nurses and anesthesiologists came by, looked at me, introduced themselves and wandered off. "I will save it if we can, but I don't want your hopes up. I don't want you to wake up surprised or disappointed. If it's dying, it will make you very sick and it will have to go."
Jason arrived shortly before I was taken back to surgery, I'm sure to the infinite relief of the nurses who were undoubtedly sick of hearing that I really wanted to see him. Could we wait just a little bit to start the iv? He'll be here soon. He left at 4:00, yes, from Kalamazoo. Right, just a few more minutes. Thank you. Thank you. 
He was upset at not having been there, but how could we have ever predicted, ever even harbored such fear? Everything looked the same. This happened too fast.
Nurses tried and failed eleven times to get an iv into my veins. My hands and feet are pocked with their efforts. "You're so nervous" they said, "Your veins are clamping down, crying, no water..." They wheeled my bed toward the operating room as I turned back to Jason, "Get my phone from my purse. Call one of my aunts - tell her to call everyone else. Tell my mom what Dr. Momoh says."

I woke up sore, groggy, confused, asking for Jason, water, and pain medicine. "Soon," a sweet, elderly nurse assured me. I woke up with pain from my new surgical drain, with a raw sensation under my skin from where the transplanted tissue, that dying mass of fat and skin, had been scraped from my skin and chest wall, with only one breast.

It will be weeks before we can talk about a prosthesis, months before we discuss my remaining reconstruction option. In the meantime, I will set about healing, managing the loss, my anger and sense of waste at all that time, all that care-raking, all that healing and frustration, and figuring out how to disguise my lopsidedness so that I can go back to getting around in the world without wearing cancer so prominently.

trying

Finally, a bit of excitement wends its way into this ordeal not a moment too soon. While managing, treating, and recovering from my cancer care so far, there has been little about which I have felt excited. I felt relieved that there was no cancer in the lymph nodes. I have felt pretty good, if sometimes frustrated, with the progression of my surgical recovery. But somewhere in my perhaps too-negative mind, these things fall short of being slotted into the category of events that I would normally call "exciting." They tend, instead, to sit in a new compartment that would be appropriately labeled, "thank fucking god because this could be so much worse," and while I have been swept over with relief and gratitude, it's been a far cry from excitement. But now, in advance of beginning chemotherapy, this is when the exciting stuff happens.
Unless in the midst of a pregnancy scare, a woman's period isn't something she is usually eagerly awaiting. I for one hate mine; it's a hassle and it's uncomfortable, rife with backaches and literal contractions (yep, just like childbirth contractions), and if it didn't ever happen I would think that was pretty cool. Though this month, I am attuned to every pull, bloat, cramp, ache, and new zit. This month, when the cycle begins, I will high-tail it to Ann Arbor to begin the in vitro fertilization process.
The procedure itself is a little unnerving. For ten days I will give myself shots (instruction video here if you're curious about the process) and make a few trips to the fertility clinic to have ultrasounds to monitor follicle development. When the follicles are mature, we will go again to the clinic where they will harvest the prepped eggs by pushing an enormous needle through the wall of my vagina and sucking the eggs up with said giant needle. Jason will have some time alone with a specimen cup and sperm and egg will meet in a petri dish. Romantic, huh? Don't mistake me - I'm no personhood or life-at-conception nut. I think those ideas are damaging and scary. But there's something thrilling about the conception process, even when it's going to happen in a little plastic dish under a microscope instead of inside my body. I mean, we're trying to make a baby! It's a pretty fantastic thing. From this hellish time in our lives will come a few embryos, relics of our current physical states to be stored and frozen until cancer is behind us. A child grown from this fertilization process will be the child of our younger selves. When other couples announce bashfully, excitedly, "we're trying," and head home for frantic quickies on lunch breaks, take temperatures, have lots of unprotected sex, and pee on the fibrous end of pregnancy test sticks, we will pull those internal functions out, place them in the care of doctors, cross our fingers that a few will take, and wait until my five years of Tamoxifen (hormone-suppressant pill therapy) are over. The delay is the strange part - we are now "trying" - these next few weeks our modified efforts at conception (less fun than the old fashioned method), but the pregnancy is off in the future somewhere.
I'd always envisioned deciding to try to get pregnant as an exciting choice, a time of eager waiting and redoubled sexual activity, buzzing anticipation as tests cure on the back of the toilet. It turns out that even with that happy procedural rug yanked from beneath my feet and supplanted by a sense of urgency to complete the harvesting, fertilizing and freezing before I start chemotherapy, I am still pretty stoked to be in the midst of baby-making, however it comes to us.
And five years from now, when a few of these embryos are thawed and implanted, we will huddle around pregnancy tests, hoping that Conception Effort Part II is also a success, that on the other end of this shit storm lies a healthy me, and a thawed cellular me+Jason concoction that will take up in my uterus for a while. 
Hey everyone, guess what? We're trying to make a baby!
Thank you forever and ever for your overwhelming support. We're pretty damn excited.

slowly going

Healing is a slow process, and I am impatient. Each day I test the shrinking limits of my arm's reach, prod at the new breast, and feel frustrated that the reaching is painful, that the breast is so hard. I do find joy in my progress and acknowledge that much progress has been made; no doubt many of you have heard about my excitement to now be able to wear pants with zippers and pull-over shirts. More accurately, I can wear one particular pair of pants with a zipper and a rather stretchy fabric waistband - my one attempt to put on jeans was an uncomfortable failure. I could always jump on the 'leggings are real pants' bandwagon for a couple weeks and evade public judgement because so many real pants-haters before me have paved the way for me to leave my house in tights and a t-shirt. But seriously, leggings just aren't real pants.
I can drive again, the liberating result of both taking no pain medication during the day and having had my last surgical drain removed. I can sleep in my bed with my husband and shower and use the stairs when he's not home without fear of becoming light-headed or falling. For the most part I walk like a person without any ailments, and if I wear a bra, no one would know anything had happened to look at me, that thin, thin cup and a sweater sufficiently disguising my malformed, bandaged breast.
I am adjusting to the scar on my butt and how I had anticipated that my underwear would hide it, but they do not (time to invest in some high-waisted granny panties!). The skin feels thick, taught and hard. Sensation is missing which makes the pain that emerges at odd times throughout the day difficult to pinpoint. It's there somewhere, but I can never be sure what I'm touching, pointing out. I spread the contents of a capsule of vitamin e over the scar and my fingers no longer recoil, startled, at the feeling of it - so unlike the rest of me. It feels very thick and looks very thin. 
My effort to regain a full range of motion in my arm is both the most painful, and my favorite part. I can control it. I can practice and work on it, will it to reach, where I can do nothing but wait for my breast to heal. I cannot will the skin to grow any faster, to become less bruised, cannot stretch away the ugliness of it. I can get my arm up over my head but when I do, the resistance starts near my diaphragm and reaches up past my shoulder. I breath deeply and walk my fingers up the wall again. Turn and try to reach up up up with it straight out to my side, feeling a heady mix of pride and defeat when I can get it just above a 90degree angle from my side. "Jason! Look!" while internally it is nothing but, stretch, stretch, stretch, ow ow ow. Too far and I'll only make it worse, by body's reaction a reminder to stop. That it could ever reach as far as the left, which extends with ease until my ear touches my bicep, is a distant reality (I hope).
I want an instruction manual for the first time in my life: "how to manufacture patience for the remarkably impatient patient." Because as wonderful as it is to get out of the house, to see people, to know that I look mostly like my old self, (and it really is wonderful) there's a persistent little flicker in my own mind that I'm not there yet.

choosing it

We can do more testing. It seems we always have the option of More Tests. It also seems to be the case that regardless of how much testing we do, there is a hefty amount of my own decision-making necessitated by whatever information sits before us. The picture is always incomplete.
Monday we met with an oncologist from U of M. Somehow I anticipated that she would come in, sit, down and tell me straight - either I need chemo or I don't, right? Not so much. "We tend to lean toward it, but we also acknowledge that there are lifestyle and personal considerations. We also acknowledge that many patients do not need it," says the kind-faced doctor. She talks to us like we are children, like we are the last people on earth who could be expected to understand anything about our circumstances.
There is a test I can have done called the oncotype test that analyzes the genetic make-up of my cancer cells and gives me a score that categorizes my risk for recurrence - a low enough score means the doctors would feel comfortable with me not having chemotherapy. Scores are categorized into three risk pools - low, medium, high. Because of my age, the doctor suggested that even a low score that was close to the middle range would elicit chemo recommendations from U of M's tumor board (that's the name of the team of doctors who review the cases together). The test, however, like everything else about cancer, is an imperfect tool for assessing the risk of women my age. The test was designed with older breasts in mind and owing to the infrequency of 28year-old breast cancer patients, there is little data about its efficacy for young women. The oncologist seemed to contradict herself as she then said it could be a useful tool, but that assessing the data would include some guesswork. "We just don't know," she said as though she were addressing a kindergarten classroom. Essentially, I'd have to fall into a very small category of low risk in order to avoid a chemo recommendation and that seems mathematically improbable.
Still, it's up to me to choose, and here is where the numbers get me. If I were to do nothing from here on out, there is a 75% chance that I would be perfectly fine, cancer-free and healthy in ten years. Decent odds. And if we were talking about $20, I'd probably take them, but instead we're talking about my life so the remaining 1 out 4 sounds like a big number. That's a lot of people, 1 in 4. Using the hormone-suppressant drug therapy reduces this risk to about 18% which is better, but to put it in terms of people, that's still almost 1 out of 5, and isn't much more comforting. Adding chemo to the mix reduces these numbers to 10%. Better. I don't love these numbers. Nothing about them makes me swoon with any sort of comfort or notion of lasting salvation from over-zealous, productive malignancies, but one set of numbers is obviously preferable to the others, right? The crazy thing is that no matter what, 75% of patients are being over-treated. I am much more likely to be one of those patients than one of the other, less fortunate ones. That said, I am scared shitless. I'm terrified to go through this again, to know that if I did go through it again, chances are it would be with metastatic disease that had grown in my bones, liver, lungs, or brain. To know that at that point it would be too late to think about living cancer-free, that instead I would live on a regimen of disease management. But it probably won't come back. Finally, a set of odds is stacked in my favor.
Still, a feeling lingers, thoughts that chill me, nagging what ifs, impossible to answer. What if I didn't do the chemo, though the doctors seem to advocate for it? What if I went on with life now instead of three or six months from now? Could I actually do that? Could anything but the most rigorous treatment plan allay my fears of having cancer again? And if it did come back, or more accurately, reemerge in some distant part of my body ten years from now when we hopefully have a child, and I hadn't done everything in my power to stop it, could I live with myself?
I choose chemo. I choose its temporary side-effects over years of greater uncertainty. I choose the set of treatment options that I think offer me both the greatest peace of mind and the greatest opportunity to live the life I wanted before this nightmare began. And I'm doing it because I know with every bit of me that if I didn't, I would never move on, that fear would leave me crippled, and at this point I think cancer has taken enough from me.
Hashing out this decision, something clicked. A scene suddenly set for a classic old Western showdown between me and cancer. Cue the tumbleweeds.
I'm moving forward with everything I've got. And I haven't felt so frightened, so sure, or so alive in months.

drainage

This post is about surgical drains and maybe isn't for the weak of stomach. Because surgical drains are pretty gross. There is also a picture of my actual drain, so the whole post is after the jump in order to keep the picture from popping up on your screen as soon you arrive here.

what i know

disclaimer: I'm sad. When I made this I assured myself that I would share it only insofar as I trusted that I would still be honest in writing it, so that's what I'm trying to do. I'm not attention-seeking and I certainly don't want to worry anyone, but at the risk of doing both, here goes the honesty. 

At present, I don't feel like I know much about my new body. We met with the plastic surgeon yesterday and he immediately mentioned lifting my untouched left breast to match my mangled right and it sent me into a sobbing tizzy. I don't want more surgery. I didn't want him to make my right breast any perkier or different than the left. That cancer-free left breast feels like a precious thing right about now; I've no interest in meddling. It was the model we were shooting for. Just thinking about it threatens to unhinge me again.
I know I don't like it, what with it's deformities, pains and incompetencies. I know that my right breast is hard and it seems to be in the wrong place, like someone shoved a day-old bagel in there too close to my collar bone instead of soft, malleable fat. I know that it is discolored with bruises. I know by touching the bandage that where I had a nipple, the very thing that made the breast a breast to begin with, I have a circular incision that feels rough and thick. I hope that most of this roughness is glue and not scabbing. I suspect this is wishful thinking as this incision site was used twice - once for the initial surgery and again for the emergency surgery. I know by accident that at the center of this incision is a flap of skin that used to belong somewhere else and that it is grayish pink in color (peripheral vision's a bitch sometimes).
I know that we have indeed arrived at our unimaginable destination. It's real. I get it now. Which is exactly why I can't joke about it anymore. Because now it's my life. In the same way I recoiled when a family member talked in too much detail, too flippantly, about my reconstruction, I am now recoiling from my own callousness. I have never felt so brittle; everything seems to hit a raw nerve. Indeed, they're all raw.
Yesterday after we went to see the doctors, Jason asked if I wanted to get lunch anywhere. I requested a stop at the food co-op so I could get some yogurt, move around a bit, be somewhere familiar doing normal things I did weekly before the surgery. As I struggled out of the car, he stopped me, "Let me see," like a kid leaving for a date or an interview, to make sure my drainage tubes were not hanging out anywhere. "Look at me," I said back to him, "looking just like a regular person doing regular person things." And maybe, just maybe - in spite of the limp, the slow walking pace - I fooled someone into thinking just that.

just in case you're wondering

I'm here, home safe and sound, tired with pain decently managed and figuring out the limits and capabilities of this post-surgical body of mine every day. It's hard to sort out all of my thoughts and feelings about the hospital, surgery, my new body, my frustrating post-op inabilities, this amazing support network, the new intimacy of Jason changing bandages and checking blood flow in my new breast because I still can't bear to look at it, and a host of other things that come along with post-op cancer. Or, more accurately, lack thereof. Because there isn't a single bit of cancer left in me that they can find. So now we wait to find out if I will need chemotherapy, wait to have these awful drainage bulbs removed, wait to regain full movement of my arm, to start fertility preservation procedures, to feel like myself again. to have our life back. We're getting there.

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.

monday!

I have been awake for three and half hours today, and so far this is what has happened: 

1. I started the process of sorting out my unemployment issues which is a huge relief because the super a-hole I talked to last week a) told me that I would not be getting paid, b) failed to give me the forms I needed, and am entitled to, in order to appeal my non-payment, and c) was very rude, particularly when I asked if that office was where I would apply for disability after my surgery since I might not be allowed to work for 4-8weeks. When I asked he responded in a really nasty tone, "Why? Is there something wrong with you?" Jerk. Also, I was crying, which is embarrassing to admit, but really points out how flat out mean this guy was.

2. I have a job interview this Wednesday afternoon with Communities in Schools! I am interviewing for one of two part-time positions, and both sound pretty great. 

3. Ok, I guess that's all really. But really, this is a good start to my week. 
4. I am a nerd and I think stock photos are kind of hilarious, hence their occasional inclusion in my posts. I am not convinced that the hilarity I am aiming for has ever come across. Maybe the formatting is my problem? 

breaking up with my right breast

In probably a month, I will have a mastectomy. I may or may not wake up with two breasts. It's possible I'll wake up and have only surgical drainage bulbs where my breast once was. I've done a lot of convincing myself that this is fine, but the nearer the mastectomy, the more the drama of it sets in. Looking at the powerpoint from the plastic surgeon is oddly unhelpful.


Cancer is lonely. In a way it feels like being cheated on. You know that wrenching feeling of betrayal and loss? That angry heartbreak? It's a little like that, except that I get to be the first (I sincerely hope only!) of the people I am close to to experience it -the first one whose cells cheated on her, the first one whose ducts gave way to the sneaky, destructive cancer- so no one knows quite what it's like. And to think it all started so long ago! Here I've spent the last few years blithely taking mediocre care of my body, enjoying it, criticizing it, learning to be comfortable in it, and all the while it's been bested, duped in to my undoing by a couple of half-baked mutations.* A tiny parasite nibbling at my trust - can it happen again?
*In cases of actual cheating, I generally disagree with blaming the third party, but here I think it is reasonable.
Some of the loneliness is self-selected. It's hard to reach out to people with this weird need I can't even place when I've gotten into a mood about this whole ordeal that makes me think I am not the sort of company to which I ought to subject anyone. Sometimes I find myself having an internal dialogue that goes something like this: I don't want to have cancer! I want my fucking life back! Well, obviously you don't want cancer - no one wants it. Shit happens. Big breath. Go. Not reaching out in these moments is also a way of sparing myself. No one wants me to be stressed out or to feel sad or to lose it. You're going to be ok. You're going to kick this thing. Don't worry. - the collective kind mantra of the people who care about me. Oh, ok. Cool. I didn't realize it was so simple. See? I'm being a jerk just thinking about that advice.
Here's the thing - in any bad break-up, your friends are right when they say the philandering, untrustworthy party is an asshole. They're right to discourage you from getting too wrapped up in the heart hurt. I completely agree... cut loose the offending appendage! We don't need its kind around here. But we've gotten awfully used to it, so there is bound to be a painful adjustment period.