Maybe it was the morphine. Or maybe it was being on the other side of a surgery that I had been both desperate to have and dreading. But I felt so much relief as I regained full consciousness in my hospital room, surrounded by my family.
My parents, sister Michelle, brother Robert and younger son, Benjamin, and bestie Jenn LeBlanc all looked intensely relieved, too. The frozen section of the sentinel node biopsy had shown no cancer in my lymph nodes. What we didn’t know then was that the deeper pathology would later show random cancer cells in one lymph node — which means nothing and is the same as a negative node — and a 1 mm micro-metastases in another. The third node was 100 percent clean.
What does a 1 mm micro-met mean? No one has really been able to tell me. Some doctors say it’s the same thing as a negative node and shouldn’t be counted. Others still hold to the older, more traditional belief that it counts as cancer. So...
But we didn’t know this on June 5.
We shared our relief that the surgery was behind me, that I most probably had no cancer in my lymph nodes, that the worst might be over. Having them all with me meant so very much.
But I’d just had major surgery. I had a morphine pump the button of which glowed green when I was able to push it again. The pain relief was good, but not total. I felt like I’d been stabbed in the side, the result of incisions created for drains that were threaded beneath the incisions to drain off excess fluid. The drains were to become (and still are) the bane of my existence post-op.
I hadn’t slept the night before, and with both morphine and anesthesia in my system, I was extremely drowsy. But relatives aren't allowed to push the button, nor are medical staff. Self-administered pain relief has to be just that. This basically meant I couldn't sleep, as dozing off meant my pain relief vanished in a relatively short period of time, leaving me wide awake and hurting.
My family tried to help, telling me when the light turned green again. They would point and say, “Green! Green! Green!”
But that still meant I had to be awake every 10 minutes to push the damned button.
My nurse that day was a wonderful, fun woman named Laurel. She checked my vitals at regular intervals. She also gave me a bolus of morphine to carry me through several rounds of button pushing, enabling me to doze for a while.
Of course, then I had to pee.
The cool thing about peeing after getting a sentinel node biopsy is that the blue dye they inject into your breast to light up the sentinel nodes turns your pee blue. I don’t mean a hint of blue. I mean full-on Papa Smurf blue. In my morphine state of mine, I found this hilarious and wanted to show my pee to everyone. It’s a wonder I didn’t take a photo of it with my cell phone.
Laurel, the nurse, helped me into and out of the bathroom, and it was in the bathroom as I was about to pee again that I learned she’d gone to my website to read about my books. Either my sister or I had mentioned I was an author, and she’d taken the time to check me out online.
I wished I’d had a book to give her. Alas, I hadn’t brought any to the hospital.
At one point, the physican’s assistant who works with my surgeon came to check my surgery site. This was a sobering moment that I remember.
“I don’t want to see,” I told her.
“You don't have to see. Only I have to see,” she said.
Of course, that wasn’t true. Eventually, I would have no choice but to see.
But lying there in pressure bandages only a few hours post-op, I didn’t yet need to face my changed body.
Then came the absurd part of the day where they told me to breathe. My oxygen saturation rate kept falling. My mother, a respiratory therapist as well as an RN, coached me in how to breathe. But no matter how deeply I breathed, I couldn’t get my oxygen levels up. Then someone discovered that 1) the oxygen had been shut off somehow and 2) the clip on my fingertip wasn’t working. Once the oxygen was on again and the clip had been changed, I was suddenly fine.
As the day wore on, my brother and son left for home, both of them having to return to work in the morning. My mother and father left at suppertime. And so my sister settled in to spend the night with me.
The night shiftThat night is a bit vague to me.
Laurel went home, and a kind woman named Lori took over as my RN.
I know my sister went to get some supper at some point, while I feasted on broth and Jello, clear liquids being all I was permitted to eat.
I also know that I tried to go for a walk, and that the IV had infiltrated my right hand, making it blow up like a balloon. I was down the hallway away from my room when the IV was disconnected. With it went my pain relief. By the time we got me back to my bed, I was in serious, awful pain. Fortunately, relief was just a new IV and a bolus of morphine away.
Did we watch TV? I can’t remember.
My sister managed to fall asleep at one point. Dependent on that boost of morphine every 10 minutes. I couldn’t sleep without the relief it gave, and if I fell asleep it wore off.
I listened to my sister sleep. Sometime in the course of the night while she was sleeping, I took this awesome selfie. Note the glazed eyes and the fabulous hair knot.
I watched the hours go by and tried hard not to have to pee because I didn’t want to wake my sister up. Also, the CNA who was assigned to me for the night wasn’t very good. Though I wasn’t supposed to be left alone out of bed, she would help me out of bed, then rush off, leaving me to get back in myself, complete with a massive IV pole. She didn’t chart certain things, and left me to figure out how to put on my oxygen again.
I waited from four AM to six AM to pee because I didn’t want to wake my sister. Rather than calling for the CNA, I went by myself. As I predicted, it woke my sister. By this time, the blue was gone, and I was back to ordinary yellow pee again.
Outside the window, the sun began to rise on another Friday morning.
At this point, I hadn’t slept since getting up Wednesday morning. I was tired, in pain — and hungry.
Soon, Laurel was back, and things were done right again. The surgeon’s partner checked me on rounds and told me I was being discharged. Some part of me wondered if this wasn't grotesquely soon. But at least I was allowed to eat again. I ordered breakfast — an omelet and potatoes — and did my best not to worry about what came later.
I can’t remember who brought me that first latté — my sister or my mother. But damn! That was too good to be true. Jenn showed up soon thereafter with another. And before I knew it, I was being given discharge information and told it was time to go.
In truth, I was being rushed out the door. I’d had a bilateral mastectomy and was being discharged in 24 hours.
My mother helped me dress, which meant removing the hospital gown to face the pressure bandages that wrapped around my flat and hurting chest. The post-mastectomy camisole I’d bought wasn’t comfortable. Fortunately, my mother had bought a smock with Velcro down the front. It was loose and had pockets for the infernal drain bags.
By the time I was dressed, I was in tears. Pain, exhaustion, tension, trepidation about going home where I would have to face what had been done to me — it overwhelmed me. Jenn, my sister and my mother were with me as I was rolled to the front exit in a wheelchair, where my father had his SUV waiting for me.
We drove for 1.5 hours to my parents house, where we arrived to find that the motion of the drive — those bumps and curves — had started a surge of bleeding. Blood had filled the drains and drain tubes, spilling out of the incisions in my side and down my skin. I was also in a great deal of pain.
What happened next was a mini-nightmare.
They had prescribed Dilaudid for my pain. Not only did the drug not work for me, but it gave me a terrible allergic reaction. My entire body began to itch horribly. My face turned red and began to swell. My lips started to go numb.
My mother gave me Benadryl, and we got back in the SUV for a long, arduous, horrible drive back to the hospital’s emergency room, where it seemed at first that they would make me wait in the waiting room.
“I just had a bilateral mastectomy for breast freaking cancer! I have no pain relief, and I'm having an allergic reaction. I am NOT sitting in the waiting room!” I shouted at the medical intake guy, who seemed more interested in getting my financial info than hearing what was wrong with me.
By then I was exhausted and in tears. Fortunately, my mother and sister were more than up to the task of advocating on my behalf. My sister can get angry when pushed. If she raises her voice, watch out. Soon, the head physician of the entire ER was attending us. I was given IV Ativan, morphine and Benadryl. And I pretty much drifted off while my mother dealt with the rest of the medical stuff — getting a new pain med RX, figuring out a way to get me home that would be less painful, and so on. I barely remember the ride home.
Between Oxycontin, Ativan, and Benadryl, I managed to sleep a little that night.
Facing myself in the mirror
When you’re getting ready for a mastectomy, everyone tells you that your breasts don’t make you a woman. They don’t make you who you are. They aren’t the source of your beauty. True beauty is on the inside.
This is all true. But to some degree it’s all just platitudes.
There is no easy way for a woman to lose both of her breasts. There is no way for a woman to lose such an important part of her body without feeling a sense of loss and grief.
During the long weeks prior to the surgery, I’d told my mother to buy a bunch of cheap sleeveless T-shirts because I didn’t plan on taking a shower nude until/unless I was ready to face what this terrible disease had taken from me.
But when I woke up the next morning, I found myself wanting to know what lay beneath the bandages. When no one else was around, I lifted up the edges and looked beneath. Long incisions. Steri-strips. Puckered skin. A sternum that seemed to bulge out. No breasts.
The sight of it settled somewhere in my stomach — and it wasn’t as horrible or shocking as I’d feared it would be. Of course, I’d only caught a glimpse. But I had looked and lived through it.
After we emptied my drains again, I found myself desperately wanting a shower—not a small thing when you have very long, very thick hair and it hurts like hell to move your arms.
We had strategized about the whole shower thing ahead of time. My mother had bought the T-shirts I’d requested. She’d also bought a lanyard for me to hang my drains from so that they would be out of the way. My brother had installed a big, hand-held shower head in my mother’s shower so that it could be used by anyone to wash my hair if necessary.
They helped me undress, and my mother carefully cut off the pressure bandages, which we could have removed the night before if we’d chosen to do so. When the big bandaging came loose, I surprised both my mother and my sister by stepping away from them — and standing naked in front of the mirror.
And what did I see?
I saw a woman who’d been through hell, a woman who was fighting to live, a woman who would bear the scars of that battle for the rest of her life. I could see in her eyes and on her face that she’d been through a terrible time, and I felt compassion for her. But I also felt her strength, her will to survive. I felt the iron inside her.
There aren't a lot of times in my life where I can say I felt like a hero, but looking in the mirror at the four-inch incisions that had replaced my breasts, I respected the hell out of myself.
I didn’t shed a single tear.
My sister and mother were surprised. I think we had all expected a bit of a breakdown. But I didn’t. Instead, I waited for my mother to turn on the water, then stepped into the warm stream, lifted my arms slowly and began to wash.
It took an hour and a half from start to finish, but I washed my own hair, combed conditioner through the tangles myself, and then washed my skin, each motion of my arms sending pain across my chest. Afterward, they helped me dress and get settled with pain meds.
Looking back, I really don’t know how I made it through that first shower without crying. Some things in life you simply have to face head on. When you’ve been diagnosed with cancer, that list grows long and dark and scary.
A mastectomy is, to steal a few words from Shakespeare, “the most unkindest cut.” And yet a mastectomy is a small price to pay to live. The core of who I am is unchanged. I am defined by what I love and what I do. I am not defined by what has happened to me.
Still, I will always miss what was taken from me.
The night before my surgery, I asked my sister to photograph my breasts. I wanted some way to remember them. And before she left for Sweden, I asked her to photograph me from the same angle with my mastectomy.
The photo of my breasts I’ll keep to myself. My breasts were beautiful. I always loved them. That photo is one of my personal treasures.
The photo of me after my bilateral mastectomy I will share. I share it to prove that there is no shame in a changed body. I share it to challenge superficial notions of womanly beauty. I share it for the sake of other women who may be facing a breast cancer diagnosis and feel afraid that they can’t face surgery. I share it so that those of you who have friends or loved ones fighting breast cancer can understand perhaps a bit more deeply what your friends and loved ones might be going through. I share it to show you my battle scars, the part of me that is standing up to cancer and telling it to fuck off.
Here’s what I see when I look in the mirror.
The ridge in the center is my sternum, my breast bone. Where my breasts once were are small concave spaces that make my sternum bulge out. The doctor left some extra skin to help with my reconstruction, and I still have some swelling from the surgery. The steri-strips haven't fallen off yet, and the bruising is still there.
Yes, my body is changed. But breasts aren’t the only thing breast cancer has taken from me.
It has also stolen the illusion that life is certain, that tomorrow is mine to do with as I choose. This disease has robbed me of that pleasant fantasy, leaving me face to face with the stark reality that we are all living on borrowed time.
On my desktop is a document I created in January titled ”Goals for 2014.” In that document, I mapped out how I would spend this year — the books I would write, the trips I would take, the new activities I would explore. Two I-Team books. A new contemp series. A trip to Canada. A painting class. Tai chi. What a year it was going to be!
This year, I will fight cancer.
I plan to win that fight.
When my brother sat beside me in the hospital, he told me that I’d just fought that battle that would win me the war.
“There are still more battles to come, but that was your D-Day,” he said. “Keep fighting, and you’ll win the war.”
It was June 6 when he said those words — the anniversary of the real D-Day. A good omen?
I hope so.