Tumorous: Breast Intentions

Fluid drains, nipple death, and camisoles — all things related to Juliet Disparte’s mastectomy.

Illustration by Rebecca Elves

About those six little spots on my MRI.

There was one spot in particular that worried my surgeon. Think of a woman’s breast like a clock. Then divide it into quadrants — from 12 o’clock to 3 o’clock, 3 o’clock to 6 o’clock, and so forth. My initial tumor was in the 5 o’clock position, way down at the outer edge of my breast and seemingly very close to the skin. This in itself was worrisome enough, but there was another spot on my MRI around the 10 o’clock position. It was lit up like a Christmas tree on the scans, meaning it had soaked up a lot of the radioactive chemicals that attach to cancer cells. The quadrants are important because two tumors in two different quadrants most often necessitate a mastectomy, in which the entire breast is removed, as opposed to a lumpectomy, in which just the tumor is removed.

My surgeon ordered another biopsy, to determine whether the other spot was cancerous, too: back to the breast center, back to the young radiologist and the heavily-accented, motherly nurse, more needles, another ice pack in my bra, and several more mammograms.

Around this time, I was meeting with my surgeon almost every day. Now that we knew the cancer hadn’t spread to my other organs, we spent a lot of time discussing whether I’d undergo a lumpectomy or a mastectomy. My surgeon was not too keen on the idea of giving me a lumpectomy. Because my breasts are so small, she thought removing the lump might also leave an unattractive tumor-sized divot in my breast. Obviously, in the event that the second spot was cancerous, I’d have to do a mastectomy. But she generously offered me the option of having a lumpectomy if the biopsy came back negative for cancer.

A couple of days later, the answer came. Sort of. Unfortunately, this time, the radiologist missed the suspected tumor when taking the biopsy. It happens.

The Friday before I was scheduled for surgery, I got a call from the magnetic imaging lab, confirming my appointment for an MRI-guided biopsy of the tumor we missed last time, and the other worrisome spots.
I panicked. A biopsy entails poking the tumor with a hollow needle and taking a sample. An MRI entails laying absolutely still in an uncomfortable position, in a tiny, loud tube, for half an hour or more. Put these two together, multiplied by six for the other possible tumors, and you understand why I was not looking forward to this procedure. I pictured my breast like Pinhead from Hellraiser, with needles sticking out in all directions. No thanks.

I called my surgeon to ask her if I really, truly had to do this. I chose that moment to tell her that I had decided to go with the mastectomy. By my way of thinking, the mastectomy rendered the MRI-guided biopsy unnecessary — they were going to take it all out anyway, those six little spots included, and they could biopsy to their hearts’ content once the whole mess was removed from my body. I actually tried to persuade her to give me a bilateral mastectomy, in the misguided hope that removing both of my breasts would protect me from a recurrence of cancer in the future. She gently explained that a bilateral mastectomy was not necessarily an insurance policy, and suggested that we first deal with the known problem — the cancer in my left breast — before giving me an unneccessary. Later, I would be extremely grateful for this advice.

After some discussion, my surgeon decided it would be ok to cancel the MRI-guided biopsy and move forward with my mastectomy as scheduled.

Everything was set for my surgery. The day before the operation, I left work early and went to Nordstrom to treat myself to some new pajamas. I figured if I was going to lose my boob, I might as well have some sweet jammies to wear while I wallowed on my couch. I also had to pick up a special “mastectomy camisole,” which had the distinction of being my first piece of clothing with “features”: a zipper down the front and down the side, snaps at the shoulder (all so it’d be easy to put on and take off), removable pockets for the drain (more on this later), and aloe-infused fabric for sensitive skin. The camisole was $60, but luckily it was covered by my insurance. I got two.

The morning of my surgery, my mom drove my husband and me to the hospital. I cried the entire way there. I wasn’t nervous about the mastectomy itself — in fact, looking back I’m not sure I had really even considered what it would mean to have my breast removed — but I was extremely nervous about the anesthesia. I was worried that once they put me to sleep, I wouldn’t wake up again. My mom and my husband had to literally pull me into the surgical waiting area.

I should explain a little about what happens during a mastectomy from a medical standpoint. Underneath the skin, a breast consists mainly of fat and nerves and milk ducts. During a mastectomy, the surgeon removes all of the tissue between the chest muscles and the skin. Aesthetically, the end result of a mastectomy is a flat chest on one or both sides, like a young boy’s. Many times, the surgeon will also have to remove the nipple, though not always. I got to keep mine (yay!), though after the surgery, it would have no feeling, and I would not be able to breast-feed. There was also a slight chance of “nipple death.” Don’t ask; it’s just as unpleasant as it sounds. Many women who undergo a mastectomy opt to have the breast reconstructed at a later date, as I did.

During the operation, my surgeon would also be performing a sentinel node biopsy. Breast cancer spreads first to the lymph nodes in your armpit. A few hours before my operation, a radiologist injected radioactive chemicals into my breast, and while I waited for surgery, those chemicals attached themselves to cancer cells in my body and followed the same pathways as the cancer cells. During the surgery, the surgeon used an instrument not unlike a Geiger counter to look for those radioactive chemicals in my armpit. Almost always, the cancer has reached at least a few lymph nodes, which have to be removed — one or two affected nodes is nothing to get overly worried about, but if the cancer had spread into many, or all of my lymph nodes, well… that would be bad news.

Just before the surgery started, my surgeon and her nurse came by with a Sharpie to draw a big black X over the breast they intended to operate on. It sounds primitive, but accidents happen. The anesthesiologist came by to start my IV, I said goodbye to my mom and my husband, and I walked into the operating room.

Some general anesthetics erase your short-term memory. I remember climbing up onto the operating table and making small talk with my doctor as they all bustled about making last-minute preparations. I remember bragging to my doctor about a book I’d read that was “even better than The Hunger Games.” I promised the entire operating room staff that I’d get them copies of it. To this day I have no idea what book I was talking about. Then everything faded to black.

My surgery started at around 3 p.m., and lasted until almost 6 p.m. My mom, husband, mother-in-law, and sister-in-law waited at the hospital the entire time I was in the operating room, and my mom and my husband were there when I finally started to wake up around 10 p.m. I didn’t fully wake up until 2 a.m. During the four hours in-between, I’m told I was a giant pain in the ass for my nurses: I kept trying to pull out my breathing tubes, I hit my nurse call button every 20 minutes or so to complain that my “blood pressure was low” (how would I have known?), and I repeatedly refused painkillers that weren’t offered, because I couldn’t possibly be feeling pain yet, because I was still technically sedated.

When I did finally wake up around 2 a.m., my husband was curled up under an uncomfortably thin blanket on a cot near my bed, trying to sleep. My mom had gone home for the night and would return in the morning. I was propped up with pillows and there was a faint burning sensation in my chest where my breast used to be.

I can’t easily describe how I felt — maybe it was an aftereffect of all the drugs in my system — but I think I felt fine, for the most part. Peaceful, almost. For the first time in weeks, I’d had a good, long sleep, and for the first time in weeks I woke up feeling confident that my body was cancer-free. I wiggled my toes under the hospital blanket. I’d survived.
Before he went to sleep, my husband had thoughtfully placed my iPhone on the table by my bed, and of course I couldn’t resist the urge to post a Facebook update about my surgery. I’m nothing if not loyal to my generation.
Throughout the night, my nurses came to check on me every hour or so, and soon it was morning. My surgeon came in around dawn to check on the incision and give me instructions for when I went home later that day. She asked if I wanted to look at the incision myself, and my heart flipped over: I’d so far managed to avoid thinking about my once-perfect, now-deformed chest. I knew I couldn’t put it off forever, but nonetheless, I declined. Around 7 or 8 a.m., my mom returned, and around the same time, my surgeon’s nurse came in to teach us all how to care for the drain.

I’ve talked about lymph nodes before, and how they relate to breast cancer — they’re the first place that breast cancer spreads to, and breast cancer surgeries usually include a sentinel node biopsy, in which cancerous lymph nodes are removed from the armpit. Under normal circumstances, lymph nodes create lymphatic fluid, which circulates through the body performing some essential purpose, though I honestly can’t say what that purpose is.

A mastectomy and lymph node biopsy disrupts the natural circulation of the lymphatic fluid, and if the fluid has nowhere to go, it pools in the void where the breast tissue used to be. This is not good. And so: the drain.

Don’t say I didn’t warn you: here it gets really gross.

The drain consists of a clear flexible plastic tube that goes under the skin and snakes around the surgical site. By my estimation, it’s less than a quarter of an inch wide, and the portion inside your body is maybe 12-18 inches long. Any excess lymphatic fluid goes into the tube, and the tube exits your body through a tiny opening in your side. A foot or two later, the tube terminates in a bulb resembling a grenade which collects the lymphatic fluid. Over the course of a couple of weeks, your body adapts and stops generating so much fluid, but in the interim, the drain has to be measured (to check the progress of your body’s adaptation) and emptied in the sink (!!!). This process is referred to as “milking the drain,” and I cannot think of anything in my life that was less pleasant than this.

Since I had to tote the drain around for a couple of weeks, the special pockets on the mastectomy camisole came in handy.

Once the nurse taught us how to care for the drain, an orderly delivered my breakfast and my first dose of Vicodin. After I’d finished my breakfast, I started getting antsy for home. With my mom’s help, I brushed my hair and put on my new jammies, and soon I was comfortably situated on my sofa in my living room.

After my mastectomy, I took two weeks off from work, mainly because I was not about to deal with THE DRAIN (in my mind, when I think about the drain, it’s always in bold, dreadful capital letters) in the bathroom at work: gross for me, gross for my coworkers, unhygienic for all. You guys can thank me later.

The first few days after my surgery were the darkest days of my life, and they passed in a murky haze of heavy painkillers and ginger ale. My left arm was in a fair amount of pain, I couldn’t bathe because of all the bandages, and, worst of all, the unavoidable fact that I had just had my breast removed hit me like a steamroller. I realized too late that I had not prepared myself mentally for losing my breast — I’d been so focused on removing the tumors, I had forgotten to think about how it might feel to go from being young, whole, and perfect to having only one breast.

It took me more than a week to finally work up the courage to look at myself. Intellectually, I knew what to expect, but emotionally, it took me a while to accept it. During my post-op checkup with my doctor 8 eight days after my surgery, I still insisted that I didn’t want to look at myself. My surgeon was very understanding on this point, but once I got home, my husband took me into the bathroom, stood me in front of the mirror and gently but firmly said, “You should just look at it, and then it’ll be over with, and you can stop being afraid of it and move on with your life. Okay?” I nodded, unzipped my hoodie, and bared my chest. Once I saw myself, I had to hold on to the bathroom counter for support. I felt hideous. Deformed. Mutilated.

But he’d been was right: once I got over my fear of seeing myself, I was able to start moving on with my life.

Illustration by Rebecca Elves

Juliet Disparte lives in Seattle, where she works with books and goes to the doctor. For more about her adventures as a cancer patient, visit her blog, Tumorous. Follow her on Twitter.