You unfold like a flower, pt.2

At some point during one of my million pre-op appointments, I found myself sitting in my surgeon’s office listening to the PA explain to me how much everything was going to suck. She’d had the surgery, so I latched on to every word, hoping she’d reveal to me the secret of how not to have the surgery. Instead, I watched as she demonstrated to me how I would not be able to stand up fully for several weeks— “You’ll look kind of like a grandma,” she said, forming her hand into a loose fist meant to represent my future hunchback, “but over the first two weeks you’ll start to open up.” She slowly opened her hand, and I couldn’t help but picture the unfolding of a flower. I was heartened for a moment— I’m learning to love and not kill plants, a grace I would also like to extend to myself— and then I plummeted back into the morass of pre-surgery fear. Still, I keep this refrain in my head as I work to figure my way forward. For anyone reading about to undergo DIEP, or who is considering it, know that its extremely fucking hard (like, extremely), but I would do it again in a heartbeat. Its just important to know what you’re getting into- its ugly, its brutal, its beautiful, its absolutely survivable.

Wednesday is Breast Reconstruction Awareness Day (I am not pleased to reveal that I just realized the acronym is BRA…), so I figured what better time than to try and finish purging myself of the hospital experience. It occupies valuable brain space, displacing things like a stone in water, and I’d like to make some room.

I was not enthused by the idea of having a catheter, but it turns out NOT having one is even less fun. I had mine a day longer than usual, which I was extremely grateful for. Losing the catheter means getting out of bed, which means sitting up, which means walking, which then means getting BACK in bed. I went into DIEP knowing my surgeon ran a ‘boot camp’ (these were my other surgeon’s words), and I was ready to take on anything she threw at me— but holy fuck, it is so difficult to get out of bed after not moving for three days (two? Everything is a blur) and having a body-wide, open incision. My memories of the first time getting up are flashes— intermingled moments of fear and pain, teeth-gritting seconds where the only thing I could do was stare at the tile and rely on gravity to pull me forward. I was sporting some pretty interesting compression cuffs on my legs (sadly, not these) in order to prevent DVT, and getting up meant a long, complicated sequence of hooking and unhooking— unplugging my orange and white cuffs from the compressor, bringing my IV pole around from behind the bed, unplugging me from telemetry or whatever else, basically removing me from my robot docking station for a short moonwalk before hooking me back up to the charger. I can still feel the clamminess left behind by the compression cuffs, the cold sweatiness of hospital exertion.

The flow of memories is fuzzy, almost incomprehensible. My knowledge of time was based on what shift it was and when I was due for my next pain pill, so I don’t really remember when I got up for the first time. I think it was in the morning, and I wish I could remember which nurse was with me. Sitting up in bed may have involved the help of more than one nurse, it’s impossible to sit up on your own when you can’t engage your core. The process looked something like this:

• I grasp one hand on to the bed rail while slowly rolling to my side and bringing my knees closer to my chest and down to the floor, like an excruciating but probably hilarious looking tuck-and-roll

• At the same time, there is a nurse behind me helping push my back forward and keeping me from falling over. There is also a nurse in front of me to grab my hands and keep me from doing a very sad, very dangerous face plant (so mystery solved, I had two nurses!)

• I slowly fling myself on to the waiting arms of the walker, and learn how far the 3-5 feet to the bathroom really can be

The first time they get you up, they want you to walk to the chair they have positioned a few feet away. Walking (shuffling) to this chair made me nauseous, sitting in the chair took a Herculean level of effort, and finding the strength to use ONLY my leg muscles to get up and propel me to the bathroom is somehow one of the hardest, most badass things I’ve ever done. I don’t think I’ve ever been more proud of my quads and hamstrings, and if I didn’t mumble something about doing squats to my nurses I certainly thought it. Recovery is a string of new, confusing, difficult, and horrible tasks— shadows of familiar actions that have suddenly become near impossible. Getting off the toilet? Very difficult! Getting out of the chair? You’d better gather your energy first. Walking? You’d best be patient, because 20 paces are going to feel like 20 miles.

If you were to ask me the most difficult thing about being in the hospital, I think I would probably have to point to getting back in bed. It is an exercise in faith, the world’s ugliest trust fall, and you have no choice but to do it. I hated getting back in bed, to the point where I agonized over whether to get up and go to the bathroom (protip: this honestly only makes you have to go to the bathroom more). Getting back in bed is close to the exact inverse of the getting out process, only with a lot more pain. I would position myself in front of the bed, facing out toward the bathroom and clutching my walker. Next, I would basically fall back into bed while one nurse lifted my legs and the other helped me roll on to my back. I feel an extreme fear and sadness even now, 12 weeks later. It really hurt to get into bed (try as you might, it’s impossible to not put at least a little stress on the incision), and it hurt even more knowing you were going to have to do it again in an hour. After a night of getting up every 20 minutes, I realized that I could sleep in the chair and we would all be happier. Aaron had been sleeping in the chair, and I remember being weirdly concerned that it was not ok for me to take the chair from him— in retrospect, sleeping in the hospital bed was probably more comfortable for him, a human with a working core and no incisions. All of that to say, if you can manage it, I highly recommend sleeping in the recliner!

After your first success getting into the chair, PT comes by to make you walk twice a day. Mornings are always going to be easier, and my first jaunt into the hallway was exhausting but also the first time I started to feel a glimmer of my personality returning. I picked a square on the floor in the hallway, apologized to the feet of a man who probably had to see my bare ass (lifting my head to see faces was too hard, and honestly the sight of the end of the hallway scared me), and scooted back around to the squeaky embrace of my plastic-covered chair. My breasts were still being checked every 15-30 minutes, I still didn’t really want to eat, hospital television was still bad (at some point I think I was unmoored from time, accompanied only by the horrors of the Amazing World of Gumball and the promise of another dose of anti-emetics), and I lived in fear of sneezing or coughing.

Before you are released to go home, you have to take a shower and show that you can shower yourself. My plastic surgeon kept me an extra day (I think to keep an eye on the rebel left breast), which meant I “got” to take two showers. Post-diep showers are not like regular showers. The night nurse comes in between 4 and 4:30am to start getting you ready for a 5am shower, and you start to ponder the cold, cruel facts of hospital towels. Showering is an even bigger production than walking— not only do you have to unhook from everything, you have to turn around in a tiny space and try and negotiate the small (read: mountainous) step up into the shower, and then figure out how you’re going to get back up. You’re also equipped with a drain belt, which is a glorified strip of velcro wrapped around your swollen, cylindrical stomach that the nurse attaches your drains to. The shower is the first time you see yourself naked and without gauze. It is jarring to look down and see angry, red incisions where your nipples used to be.

The nurse warns you ahead of time that water is going to get everywhere, and man is she not joking. Showering yourself post-diep really just means holding the shower head and aiming it at any part of your body you can think of, and slowly rubbing one arm pit with the rough, hospital-issued washcloth. You don’t stand on ceremony in the hospital, which means you spray water everywhere because you don’t have the dexterity to switch hands and aim the water away from the door. I was terrified of being touched, and I could not bear to touch my own breasts until I was weeks and weeks into recovery.

The first night I showered, I told the night nurse I was probably going home the next day. I sent her off at shift change saying I hoped I never saw her again (in the way hospital patients say goodbye to nurses, loaded with sarcasm, appreciation, and sadness), and I felt shame and disappointment when I had to stay— and shower— another day. Shower Round 2 was easier, but the drain belt remained a horrible, confining constant— one that would come home with me.

Discharge day is terrifying and exciting. At first I thought it meant I was going home to freedom, but really the bulk of recovery lies ahead of you. I put on quasi-human clothes for the first time in a week (an olive button down that I’d embroidered with “fuck cancer” on the pocket and FC on the lapels, as well as some extremely comfortable harem pants I would call an absolute must-buy), which was tricky. My arms, stomach, and legs were swollen and even the things I’d bought large did not want to fit. As my things were loaded up and my mom and Aaron went down to get the car, I lowered myself into the wheelchair and waited for the nurse to wheel me back down to the entrance. I had not been outside in five days, and since my gloomy ass had kept the blinds drawn, I had not seen the sun.

When my mom pulled up in her SUV, I started bawling. I was scared, and the few feet up into the seat looked impossible to navigate. The nurse was wonderful and consoled me, telling me everything was fine and that I was going to be able to get in the car. I remember panicking, thinking I wouldn’t be able to get in and that I would have to stay in the hospital forever. Obviously I made it out (or did I?!?!), but in the moment the fear was as real and vital as anything I’d ever felt. Somehow we got me up and into the car, strapped in with my five drains (I lost one before I left, which was a real point of pride), secure beneath my axilla-pillas, and I braced myself for the ride home.

You unfold like a flower, pt. 1

Can I describe my experience from the beginning, in excruciating detail? Is it at all necessary or helpful? Prior to my surgery I read a lot of really technical journal articles I didn’t understand, scrolled endlessly through oddly-colored diagrams illustrating the surgery process (the human body is just a bunch of goddamn flaps!), and read multiple message board posts by other women looking for reassurance. I did not find any of it particularly helpful (also, can we talk about the number of “lady mag” articles out there pushing the narrative of going back to work and running marathons as soon as possible? It doesn’t empower, it only serves to shame); what I really wanted was someone to detail their surgery experience from start to finish.

I think part of the reason those stories are so hard to find is that your brain tries to cover up the trauma. I can sit down and run through the day of surgery in my mind— my body remembers every moment in the hospital— but when I open my mouth to try and explain it words fail me.

Our call time was 5:30, which meant we had to get up at 3 in order to do one last hibiclens shower (sort of like showering in unpleasant, dry slime) and drink clear Ensure. I was actually grateful for the Ensure, since I am a breakfast person and the combination of being NPO and nerves usually yields some next-level nausea. This surgery was at a different hospital than our usual (the fact that we even have a usual hospital is deeply irritating), and the pre-op process felt foreign. Hospital decor is always lacking, but this hospital was especially bad— whoever decided on floor-to-ceiling paper bag brown should be arrested. Old hospitals seem to believe that natural light keeps you sick, and do all they can to keep you from ever catching a glimpse of the sky again.

Pre-op is hard. There is a moment when you change from your street clothes to your hideous gown, and you feel like you’re shedding your human skin to become something less than. I always try to counter that feeling by showing up with elaborate nails, but I was not allowed to have fingernail polish for this surgery— my plastic surgeon wanted to ensure we were getting a 100% accurate read on my oxygen, and I was obviously in no position to argue. I was upset at first, but reoriented and got a rainbow pedicure reading “Fuck Cancer”, which I accompanied with bright pink socks printed with middle fingers. Anything you can do to make yourself feel more like yourself and less like a giant depersonalized bag of flesh is vital— and it also helps provide fodder for conversation at a time where pulling out words can feel like a ridiculous ask.

I was most afraid of how I would handle my plastic surgeon making guide marks on me before surgery. I’d seen countless photos on instagram of women laughing their way through it, crying, or just ignoring it— every time I tried to envision it, I saw myself turning into dust. For weeks, it was the most anxiety provoking part for me; here’s this part of my body a relative stranger is going to come in and draw on, so she can know where to cut it off. As someone who has struggled with dissociating and even just figuring out where my body exists in space, this was too much for my brain to handle. That’s where valium comes in! My breast surgeon knows me well, and had already written a prescription so I was feeling remarkably free and easy.

Mastectomy and reconstruction sometimes feels like a series of indignities strung together into one long, confusing nightmare. One special little pre-surgery indignity is the four shots you get in your nipple so they can see which lymph nodes to biopsy once they get in there— I still haven’t quite shaken the feeling that its pretty unfair that the last thing my poor nipple felt was four shots, but the pain was minimal and what are you gonna do? Aaron went with me as they wheeled me back to nuclear medicine, and I took my first opportunity (of what would be many) to force hospital employees to watch my stellar Icelandic puffin footage. My sister teased me for showing so many people, but every time I made someone watch it gave me thirty seconds of existing outside the hospital bed.

Pre-op is strange, especially for a major surgery like this. People want to be there to wish you well, to hug your neck and tell you you’re brave…but I sometimes can’t shake the dark thought that everyone wants to see you one last time in case you die. My room was crowded, but my mom and sister in particular are experts at keeping things light and laughing at the heaviness. There is a blank spot in my memory— I remember everyone being in the room and I remember being wheeled back to the OR, but I can feel a tearful gap in between. I know Aaron and I had a moment alone, but everything happened very quickly. I can remember being wheeled into the OR for every surgery I’ve had; I feel the rush of cold immediately beyond the double doors, I see the surgical lights that remind me of a confused octopus, a shiny jumble of ominous looking equipment, and what feels like a million clocks on the wall. I feel an urge to be chatty right before I go under, as if to remind myself and the OR staff I am human.

Waking up from surgery is like falling out of a watercolor; my initial memories are hazy swirls of color (brown, brown, and more brown mostly) that eventually harden into objects. I remember a voice telling me “you didn’t use your pain pump once!” so I must have been awake in the recovery room, but the first concrete thing I remember is being wheeled into my room and Aaron appearing and showing me how he’d taught himself to floss during the eleven hours I was in surgery. The flossing enraged and confused me— I didn’t understand how or why a human body was moving so quickly, but I think all I managed was a blank stare. According to Aaron, the flossing actually took place a couple days later so I guess this is a testament both to my confusion and the power of the floss.

Going in, I knew the room would be kept warm after surgery but I didn’t realize that meant I was going to be kept under what was essentially a heated pool float and be sporting a full oxygen mask. I’m sure this was included in the deluge of information I received leading up to surgery, but I had assiduously avoided most everything and transferred all responsibilities to poor, dutiful Aaron. I tend to run hot, so I was deeply unhappy to be under that blanket and my nurse very kindly let me poke my feet out at the end to try and cool off.

Waking up with an oxygen mask was not my favorite. Its traumatic in and of itself, compounded by the fact it really reminded me of my dad’s final few days in the hospital. I learned to appreciate it, though, since the forced air helped keep my sweat cool and basically acted like the world’s saddest, most expensive personal A/C. My mom was my hero and bought a little USB fan that attaches to your phone, and she and Aaron took turns fanning me so I didn’t have a complete and total breakdown.

I know I packed a bag for the hospital the night before, but I have no idea what I packed (this happened a lot in the lead up to surgery— I was supposed to take a trip to Denver and at one point I’d packed three shirts, eight pairs of underwear, and no pants). I had envisioned myself in my hospital bed, wearing ugly Old Navy button downs I’d embroidered with “fuck cancer”, reading books, and watching movies when I couldn’t sleep. I’d picked up a rock in Iceland to serve as a worry stone, had hand lotion I bought at the Blue Lagoon specifically for reminding myself I was a human who took trips in the moments when I felt like a growth attached to a hospital bed, and a wide array of essential oils to sniff like a deranged Sherlock Holmes when I got caught up in a trauma response. Instead, this is what happened: I focused 100% on just existing. Surgery compressed my personality into paper— flat and dull. At one point Aaron tried playing Bob Ross to help me fall asleep, but his gentle whisper made me rage.

I remember how my shoulder hurt; eleven hours in a crucifixion pose will do that to you, and I already carry my stress in my left shoulder. It is an odd feeling to wake up and be unable to move— I remember saying I wanted to pop my shoulder, but knowing better and focusing on small range of motion exercises for my wrists. I might’ve tried to text, but texting was an inaccessible joke and concentrating made me feel like I was disappearing. My breasts were swaddled in gauze and compressed within a pink surgical bra. I don’t remember feeling pain, in particular, just discomfort and a lot of tenderness at my drain sites. My abdominal incision, though, was a lot to handle.

They warn you ahead of time your incision will run hip to hip, but you don’t really process that until you have it. All of the sutures are internal, so when you wake up you are greeted by what seems like an open wound, a jagged Joker smile covered by yellow strip of cloth covered in bacitracin. This strip is changed regularly, and every touch is a kind of pain I find hard to describe. Its so painful its almost not— its like your nerves light up with a pain so sharp it feels sickly sweet, and then your brain refuses to process any more.

I woke up with six drains, the tubes twisting around each other like ribbons. I’d had a drain only once before, in my neck after thyroid surgery (even though that drain was tiny, in many ways it bothered me more than these six— the neck is a weird, fragile place). I had two drains beside either breast, and a drain in each hip. Dealing with them was not that bad when I still had a catheter, since my only job was to be still. The nurses would strip my drains, which involved pinching and then running your fingers down the tube to move the fluid into the drain. I got used to the ghastly sucking noise the drains made every time they were emptied into the measurement cups, but I always felt a dull, uncomfortable tugging. Those suckers are deeper in than you’d think, and your body is not thrilled about having a foreign object hanging around.

My nurses were amazing, and I fell into the rhythm of the hospital. Grab handfuls of sleep when you can, order food as if you intend to eat it, get your pain medicine, watch the doctor, nurse or PA check your flaps, repeat. Usually each flap is monitored by an oxygen sensor— your reconstructed breasts need to stay above a certain oxygen percentage to make sure they “take”, and the readings are pushed the the surgeon’s phone. My left breast was not cooperative, continually giving low or funky readings; there was a scary moment where my room was full— two nurses, my surgeon, the PA, my mom, my sister, and my husband. My surgeon can lay down the law when she needs to (see: putting the fear of god in me to eat real food and not just Ensure), and this was one of those moments. The tissue on my left breast did not believe in allowing a good reading, so they switched to using a doppler to listen for the sound of the artery. Every hour on the hour for the next five days, a nurse, PA, or my surgeon would come in, run the doppler over my left breast in search of the vein, and there would be a breathless moment where I could not hear anything and I wondered whether this would be the time I lost the flap.

Blessedly, this never happened. No matter the delay, eventually I would hear the wet, whooshing noise of the blood rushing through the vein, and for the next 55 minutes I would be relieved. I would occupy the time until the next check by trying to eat hospital food (I ordered beef medallions almost every day, and struggled to eat them almost every day), closing my eyes in a sad attempt to sleep, and at one point watching the Mueller testimony.

This is already overly long, so I will save the fun things— catheter removal, how walking three feet to a chair can feel like 26 miles, and the ugly magic of your first shower post-DIEP— for part two.

Make mine a double? Notes on surgery

Does anyone remember Scribble Theatre on Sesame Street? Every time I try to explain to people how I’m feeling eight weeks out from surgery, all I can manage is “everything feels like a scribble.” Everything is this interconnected mishmash of emotions; I’m angry, I’m grateful, I’m terrified, I’m sometimes totally lost. I did not want to talk to many people after my diagnosis, and I felt like I had become some kind of dark Jesus— everyone wants to touch the hem of your sickly garments, give you sad looks, and speak to you in whispers. A lot of this feeling is obviously rooted in anger, and one of my continuing challenges has been figuring out how to allow people to love me. It is difficult to articulate the complex feelings that follow something like this— the flow of information is one of the only things you can control, and once it gets out it is hard not to feel like you are being used as tragedy porn. It is also, frankly, discomfiting to think someone’s friend’s uncle may be out there thinking about your mastectomy. I found myself wanting to tell everyone and no one; let’s all talk about my boobs, but don’t you dare look at them! I know I am putting out the “come here, go away!” message and it is an unfair thing to put on people, but when else can you get away with being unfair? Cancer is ugly, people are complex, and I am not someone who struggles in a graceful, instagram-friendly way. In my darker moments I feel like Persephone— this experience has snatched me, and I am in the middle of trying to figure out my way back out.

In the time since I last posted (apparently nearly 12 weeks ago, which feels like a lie), we made the decision to move forward with a bilateral mastectomy and DIEP flap reconstruction. I am a rip the bandaid off-type person, so I knew I wanted to get the surgery done as quickly as possible. You have to coordinate with a million people when you schedule surgery, so it can be similar to consulting a magic 8 ball— are the breast surgeon, plastic surgeon, anesthesiologist, and OR all available on the same day? Results unclear, ask again later. I was extra nervous trying to get everything scheduled, since my breast surgeon was very, VERY pregnant (as in, she had her baby a week after surgery) and I didn’t want to do the surgery with someone else. Luckily, we got July 22nd as a surgery date and I had a team of women I felt comfortable with— and, in my stronger moments, empowered by. I am continually grateful that I have been surrounded by my medical dream team, from the hospital to home. You’re going to see these people a lot, so be discerning with who you allow to take care of your body and don’t be afraid to go somewhere else.

Everyone’s experience is different, but I found it extremely challenging to function in the space between diagnosis and surgery. I would show up to the office but be completely unable to concentrate; cancer has an uncanny ability to transform itself into the most searing intrusive thoughts, and it is very difficult to answer constituent phone calls when you’re also imagining your own death. I’m not sure how high the pull bar in your bathroom should be, sir, but while I have you on the phone what do you know about post-surgical infections and wound care? I was very, very lucky to have an understanding office and enough sick time to work half days. For anyone about to go down a similar path, remember that taking care of yourself before surgery is just as important as after— you will want to go in to this process feeling as empowered, strong, and centered as possible to better situate you for an easier recovery. For awhile, I couldn’t muster the energy to figure out what that meant for me. I spent a lot of time shuffling around and sadly rattling my cancer chains like a ghostly victorian widow, usually complimented by a lot of long, sad baths where I’d bring in a book and then stare blankly at it (Dune is great for this). Cancer’s boyfriend is situational depression, and he will come in and try to sap the joy from the edges of your existence— sometimes you have to sit in that sadness, but sometimes you have to push through and do the things that made you happy until you start to feel again. My turning point in moving forward was getting my nails done; Meghann has always come through with pre-surgery masterpieces, and this time was no exception. Bon Voyage, Boobs was our theme, and the four hours we spent envisioning my boobs’ early retirement life recharged me in a way I didn’t think was possible.

Our post-surgery (Re)Birth of Venus nails were also crucial in a way that’s hard to describe— even though I’m not the one doing the work, the time spent creating these sets are like little battles where I get to beat the shit out of cancer, chronic illness, and trauma by turning it into something that makes me laugh instead of something constantly trying to bring me shame.

In probably the biggest instance of profligate spending (but with the least amount of regret!) in my life, we booked and planned a trip to Iceland in the span of five days. We were already intending on taking a trip to Bosnia, and I knew I needed to have a good-bye boobs world tour (Aaron took to calling it AreolaBorealis, which is even better). I am convinced those ten days were crucial to both me and Aaron being able to get through recovery— we had ten days together, away from doctors, pre-op appointments, and the claustrophobic walls of my own anxiety. I was able to steal hours at a time where I did not think about cancer, and driving through a place with so much elbow room gave my heart some space to breathe. Iceland feels like a suit of armor I put on before surgery, and the time spent there probably deserves its own post. If you can make it happen, bookend your treatment experience with time away. We will be spending the night in San Antonio the weekend before we return to work, and I think putting mental gaps between work, surgery, and return to work is invaluable. Taking a trip had the added bonus of giving me a bunch of pictures I could wildly demand doctors and nurses look at, which can serve as a nice distraction from the noise of the hospital.

As so often happens when I try to tell this story, I realize I’ve gone on and on without talking about the specifics of my experience. Pre-op and the five days in the PCU (where they check on you and your boobs every hour!) are indelibly drawn into my memory, but I experience it in pictures and still struggle to spit it out in words more artful than “my incision goes from hip to hip!” and “my husband had to wipe my ass!” I have had breast surgery before, so I was kind of prepared for what recovery was going to be like, but no one told me how important it was going to be to put away any and all pretense and get comfortable with basically everyone being in your business. I read a lot about having “t-rex arms” and having drains and the importance of having a recliner (probably the most important piece of advice I came across!), but it really wasn’t enough. Breast cancer is hard, surgery can feel damn near insurmountable, and maybe I need a little more time before my brain is ready to dive into the nitty gritty.