My Mastectomy Story

An Excerpt from Body 2.0

Two weeks ago today I spent the day soaking in all the love and enjoyment I could knowing that in less than 24 hours I was going to undergo my long-anticipated prophylactic bilateral mastectomy and DIEP flap reconstruction. Intellectually, I understood what would be happening. I even thought I had an idea of the mental, emotional, and physical odyssey I was about to experience.

I have never been more wrong in my life.

I’m thrilled that Sunday I was able to do some relaxing with family. We decorated the Christmas tree with our boys and faux daughters. (My dearest of dear girls who are also known as my boys’ big sisters are chosen family.) We laughed and played. I even joined Instagram, the first social media connection I have with my boys. That, of course, was an entertaining diversion as we decorated together.

We had sushi for dinner and tucked the boys into bed early. A big sister had already begun her watch, so my Love and I could leave for Boston whenever the weather dictated. I had to report for surgery at 6:00 A.M.

As we started counting down the hours, I felt surprisingly strong, yet completely unable to sleep. All I knew I needed was to have my Love at my side, preferably holding my hand. After the charade of heading to bed, he also became aware that sleep would not come for me that night. So with a smirk, he suggested that after midnight, on our way to Boston, we go to the gym and do the Monday workout so sweetly named ‘Krista’ in honor of my surgery.

It was the best idea I’d ever heard.

We had some time to kill, so after some deliberation we chose to watch the movie “Charlie’s Angels” which was again his idea. It made perfect sense that we watch some women kicking a little ass. Indeed, the Drew Barrymore solo fight scene is one of my favorites ever. It includes my often quoted line, “And that’s kicking your ass,” as she quasi-moonwalks from the room.

The movie ended way too fast and then we were six hours from reporting for surgery. We efficiently gathered our bags and took off for the gym. Our CrossFit “box” is my sanctuary. It is truly sacred to me. It is where I was when I received the call as Mom was passing and my dear ones there continue to hold me up through her loss. It seemed apropos to physically be there.

It also seemed exactly right to be spending some of my last hours before surgery sweating and working hard under those big letters on the wall: “B E A C O N.” That is exactly what we did. I plugged my Body 2.0 playlist into the speakers, turned it up, and my Love and I warmed up. When I was ready, I took on the WOD and he recorded it for me. I knew when I return to working toward full strength I would want to see how I was performing just before the surgery.

Doing the workout was deeply emotional. Despite having to rally all my resources to get the work done, I was still distracted by the fact that it will be a long time before I get to let my guts hang out during CrossFit like this again. Regardless, I finished. And after he worked out (he killed it), we put our names on the board for the “Midnight WOD.”

Some showers (mine with the special smelly surgery soap), securing coffee (for him, drinking anything was verboten for me now), and we were driving toward the inevitable. Despite my previous instinct that I wouldn’t be chatty during this trip, we actually had excellent conversation. My Love was the most amazing company as always and drove us right into the hotel where he had a room.

Gratefully, even at 4:30 A.M. his room was ready. Now I knew he had a place to recapitulate from a night without sleep while I was in surgery. We had a brief time in the room where I took off and deposited all my jewelry and signed Body 1.0 off of Facebook. Yep, this was it, everyone, I’m officially offline until Body 2.0.

The weather outside was frightful and the walk to the hospital was less than delightful. We had a Carrie Bradshaw moment when a truck driving by hit the slush puddle perfectly and showered us. It seemed a bit like insult to injury given our circumstance, but we laughed anyway.

We arrived about fifteen minutes before we could check in for surgery and about 5:50 A.M. we were called over to the desk. The gentleman checked me in for 6:05 A.M. and then gave Brian an Applebee’s-like buzzy, lighty pager for when he could join me for the last few minutes in pre-op.

As we waited, my body was shaking, rebellious against my resolute mindset. My Love gently redirected my attention by cuddling me and holding my hands. And then they called my name for the early surgery cattle call. I walked away smiling at my Love, hopping in an elevator with about ten other souls. I landed briefly in a cramped waiting space, but I was called in first. My guess was I was the only one in line for thirteen hours of surgery that day. The staff had to get a move on.

Ushered into the corner curtained space, the nurse asked my name (I remembered), my birth date (also remembered), and why I was there (how could I forget). She invited me to use the restroom, get naked and put all of my things into the handled hospital bag, and climb onto the bed. She would be right back. I did as she requested and we were off to the races.

When she returned, she discovered her computer wasn’t working. As she went to seek another, I secretly wondered if the amount of nervous energy I was emitting simply overwhelmed her computer. While I waited for the nurse to return, I eavesdropped on all of the nurse anesthetists as they prepared for their humdrum day at work. I heard all about how great the wedding was, how to infuse gin with hot peppers, and who was planning to hit the gym after their shift. To be fair, the curtain was open, they were three feet from my bed, and the distraction was necessary.

After my eavesdropping entertainment moved on, I was forced to look within. Despite the chaos beyond the curtain, I slowed my breathing, focused on my third eye, and thanked my breasts for being such an overachieving part of the anatomical team, especially these last few decades. I was within long minutes of having these parts of my body literally amputated and the gravity of the choice hit all at once in those solitary moments.

I touched and looked at my body feeling sensations that would only exist in my memory. Remembering photos that, after surgery would be nothing but history, a body that was, and after surgery could be but fiction. Having the opportunity to do this in a mindful, peaceful way was a gift. I’m grateful that computer malfunctioned.

Upon the rearrival of the nurse, everything gained momentum. She was asking many questions. I listened to many possible outcomes (“even death”). I signed many consent forms. I met many practitioners: nurses, anesthesiologists, residents, surgeons. And then Brian came along…finally. Someone I met gave me an IV. Someone else I met gave me a shot of this and then a shot of that, the kind that comes out of a needle, not a glass.

Happily, Drs. Lee and Ganor, two of my heroes arrived pen in hand to mark me up like the piece of meat I am. (We all are, you know.) They asked my Love to step out, pulled the curtain, and proceeded to draw all over me as I stood before them. They were reassuring, confident, and immeasurably respectful. Before they left, they smiled, asked if I was ready, said they were ready, and both squeezed my hand on the way out.

During the last few minutes, my gazing at my marked up body and insisting Brian look was interrupted by the practitioner who came to give me my “pre-medication” in my IV. Then all of a sudden an inordinate number of people in blue appeared to wheel me away. After a deep, sweet kiss and an “I love you” for my Love, they did just that.

I tried to smile at Brian as they wheeled me away. Ultimately, I don’t know what facial expression resulted. At that second, I was overwhelmed by the need to have him hold me one more time, just really quick before this whole insane, beautifully orchestrated artistic butchery went down. That one more time wasn’t going to happen. The surgical machine would not be stopped.

This is the part where you are seeing everything from the observer place, that out-of-body this experience is too real to absorb right now place. Kind Nurse Nancy, one of the sweethearts who introduced herself back in my curtained pen, was in my face explaining exactly what was happening and going to happen. As we rolled down the hall, I saw so many blurred faces and wondered if they would have their hands in my guts at any point during this thirteen-hour adventure.

After just a few minutes, we arrived in a surprisingly small room with a shocking number of people in blue milling about like wallflowers at the middle school dance. Kind Nurse Nancy asked me to scoot to my left onto the tiny little spread-eagle-body shaped table. As soon as I landed there, she asked me to relax as they were going to strap my arms down. Simultaneously, one of the anesthesiologists leaned over my face and said, “Now I’m going to give yooooooooooooooooooou…”

And while I reveled in the suspended animation of a pharmaceutically controlled coma, Body 2.0 was created.

I have these vague memories of believing the hospital was burning, that I was burning and needed to escape. I remember touching my face and feeling water in my ears like I had just surfaced after submerging in the ocean. I had the vision of the truck that showered Brian and I with slush on the way to the hospital barreling onto the sidewalk pinning me to the building and it hurt as Brian was extricating me from being trapped. Interspersed with those visceral dream-like delusions, I kept feeling the urgency of being late for a coffee date with this friend or that and needing to get going.

It’s fascinating how these memories that I have are congruent with the fact that upon waking I was cooking under a necessary torture device, apparently called the Bearhugger, that kept my body under the stack of blankets at about a million degrees to promote blood flow into my new belly breasts. Of course, with only my head exposed, I was sweating like no one had ever sweat before, world-record-crushing sweating. So I was soaked. My ears were sloshy, not from the ocean as would have been wildly welcome, but from the ridiculous amount of sweat pouring from my head. The truck was likely the manifestation of the unrivaled pain. And apparently, the nurses had to reel me in a number of times as I continued to try to leave, even though I wasn’t supposed to move an inch. That seems to account for me attempting to escape the burning hospital and also (maybe simultaneously) get to all those coffee dates.

Eventually, the fading anesthesia granted me my cognitive abilities and there was my Love! All I remember thinking at that moment was “…wow…how amazing is this man and how incredible is it to come back to him?” Perhaps there was a part of me that didn’t think I would. It is hard to ignore that possibility given how many times while signing the consents someone reads “and death” as one of the potential unintended consequences of surgery, especially a thirteen-hour one.

That part of the experience made me realize right then and there while my cognition continued to dial in that I will always carry that awe and gratitude that I share my life with Brian. Even before Body 2.0 our life together felt immense and luxurious. After playfully riding that razor’s edge of consciousness contemplating our partnership, it feels mystical.

So there he was, gently kissing me and putting cool cloths on my forehead. Every time he did, I told him it felt like my birthday. It is stunning to be reduced to breathing in and out and awaiting the next dose of cold. That was it. That was all there was. Simply enduring. And all the while, looking to my Love to do anything and everything, which amounted to changing out that cool cloth and eventually feeding me ice chips.

That was the physical part. The intangible support was where the vast majority of energy was humming. He looked into my eyes and understood me. He believed the vision that I would persevere through what was without question the most physically, mentally, emotionally, and spiritually challenging adventure of my life. Thirty hours of natural labor was a day at the spa compared to this little jog through hell. And Brian jogged right next to me the whole time.

Surgery ended around 8:30 P.M. so the first night is spent in the PACU (post anesthesia care unit), a common space shared by all the patients whose lives were just improved through the miracles of literal cutting edge medical science. Usually, I’m wildly social, but not while in mind-scrambling pain, roasting alive, hooked up to various tubes, and anxiously awaiting my body to vigorously pump blood into the transplanted belly breasts.

Needless to say, the curtain-thin privacy of the PACU, the nursing checks of my vitals and the Doppler monitoring of my “flaps” every fifteen minutes, along with the constant expanding and contracting of the leg cuffs to prevent blood clots was enough to make anyone want to escape. Add having to listen to every other person’s suffering, it truly felt like the Fifth Circle of Dante’s Inferno. Additionally add that my flaps were grumpy, meaning the oxygenation monitor and the Doppler monitoring was telling us that emergency surgery was looking more and more likely. But, with Brian’s support, I knew we could just carry on focusing our energy on flow: blood flow, energy flow, love flow. I meditated. He focused his Reiki energy. We composed a poem. We held our best intention that one surgery during this hospital stay was going to be plenty.

After the longest night of my life, awake every second in the Fifth Circle, Brian scooted out to get his much-needed fuel (iced Dunkin, black with cream on the side). While he was away, some overachieving nurses said it was time for me to move to the chair, my assignment for day one despite the oxygenation numbers being all over the place.

It was perfect! Just what I needed: something to DO. I function much better when I can actively participate. This sitting, roasting, watching the oxygenation monitor, and meditating had run its course. I didn’t care how much it was going to hurt. I was ready to move to the chair! So after arranging a ridiculous number of tubes coming out of me and the requisite tube holders and stands, I scooched and whimpered, and scooched and swore, and swore some more until I had two feet flat on the floor. At this point, the nurses reminded me that I could not put any weight on my arms and I could absolutely not stand up straight. I had to maintain the “jackknife position” from the bed. So bent completely at the waist I shuffled three feet, turned my back clockwise to eight o’clock, and gingerly sat my booty onto the recliner. WOO HOO! I did something and it was awesome!

After the nurses bolstered me with pillows and pulled my tray over (I could get my own ice chips now), I sat contemplating my circumstance. I did it. I was through the surgery. Or was I? I had run through many scenarios in preparation for Body 2.0, not one of them was emergency surgery. Anesthesia again. Waking up again. Starting recovery from scratch again. Hoping the microsurgical meshing of my blood vessels takes again. More days in the hospital. I was feeling despondent. I wanted to cry, but didn’t because it hurt just to breathe. I wanted to scream, but I had no voice from the breathing tube during surgery anyway. I had my deep dark, horrible pity party of one, until TA DA, my Love returned.

We shared some love and then I told him we could not do another surgery. We had to pool our energy, focus our intention. We had to do something. He knew part of what we had to do was relax, so he cultivated a peaceful atmosphere for me amidst the chaos of the PACU. Little did we know, that private room we were supposed to have right about now wouldn’t materialize until the next afternoon.

A full day, another longest night of my life, and another half day in the intense and oppressive environment of the PACU while not sleeping and living every moment with the knowledge that emergency surgery could be imminent was more than I could handle. My Love was also at utter wits end when Dr. Ganor, the Fellow, came to check on me. It was at that point that Brian said that the clinical milestones of the day, walking, going to the bathroom, and eating, would absolutely not be happening in the PACU. I had already told the nurses, much to their chagrin, that I flat out refused to walk for the first time all the way across the PACU in front of forty of my closest friends to use the bathroom every other patient was using. Nope. Not happening ever.

Next thing you know, we had a room. Amidst the joy, the nurses had switched my IV medication to morphine and within half an hour I was sweating (still under the hellblankets, mind you) and almost completely unhinged by unfathomable itching. Huh. I’m allergic to morphine. The more you know.

I quit pumping morphine into my bod as they gave me Benedryl, but we had to wait for some doctor somewhere to switch my pain medication. Next thing I know, I was taking some sort of oxy-something and it made me feel awful. Basically, I was high, but still in breathtaking pain. Oh, but it is time to move to the private room! Phenomenal timing.

I was so grateful to be in the room, to use the restroom, to get an ice-fucking-cold sponge bath, take a brief nap, and take a walk. But I was still in so much pain while I was taking this oxy-something. The nurse asked, “What number is your pain?” I told her it was a nine (out of ten) and then the pain hit so intensely for almost an hour I couldn’t think or breathe. All I could do was look at my Love’s eyes. That’s it. I was on the edge of the bed, bent over, staring, trying to breathe, for an hour. He reassured me “they” were coming with something else, as it turned out, it was what was working before and in the first place. Through the bright white pain, Brian didn’t leave me once. He was there. His hand was there. His eyes were there. He was my refuge.

refuge {poetry break}

The aftermath of that saga was chills, shaking, more sweating, a blinding headache, and eventually my blood pressure bottomed out leaving me even spacier than I was in the first place. Happy Wednesday evening! Wheeee! All the while, we were regularly interrupted for vitals, flap Doppler checks, and by the oxygenation monitor alarm. It might as well have been yelling, “Emergency surgery for you! Emergency surgery for you!”

Do you want to know the beautiful thing about all of this suffering?

It’s mine. I persevered. I breathed in and out the whole time. I am stronger. I am more tenacious. I have a vastly expanded edge. I was not broken. I was deconstructed and reconstructed to be fiercer, more intense, more driven, more focused on my priorities. I am awakened. I love more now. I hold my Love’s hand tighter now. I hug my boys more now. I’m grateful for every bit of my suffering.

Upon the settling in of my peace in the middle of the night Wednesday into Thursday, that gorgeous woosh woosh woosh sound of the blood flow continued to get stronger and stronger to the point where the nurses and doctors smiled and said, “That sounds great!” That is all we needed. Everything fell into place as we wished it so. No emergency surgery for us, right Bri?

With emergency surgery no longer on the radar, our boys and some dearest of dear ones came to visit. I felt composed and thrilled to see them knowing that we were close to being able to go home anyway. We had a sweet visit and they enjoyed the New England Aquarium after they left. I’m so grateful they were in such loving hands and will always have a positive memory of coming to see Mom in the hospital.

Thursday also brought another lap around the floor, a couple of times actually, a fantastic visit with Dr. Lee and Dr. Ganor, some reading for me, a CrossFit workout for my Love (coincidentally with one of my surgeons, no less), and some gluten-free pizza for us both. We were able to enjoy a date night together albeit the most interesting date night we’ve ever had. I’m happy we enjoyed it since it ended up being our last night there.

Early, early Friday morning, Dr. Houlihan, my breast surgeon came in. It was actually the first time I saw her. Brian saw her and had a comforting chat with her on her way to the operating room, but I was already anesthetized when she arrived. She brought the pathology report that showed my breast tissue was “grossly unremarkable.” In plain terms it feels a little like a blow to the ego, but I would guess that when it was delivered to the lab “fresh in five different containers” it was less remarkable than it was when I wore my favorite red dress. All teasing aside, Dr. Houlihan said “no cancer anywhere” and we thought of Mom and cried. Thank you, Mom.

Dr. Houlihan started everyday’s morning parade that included the breast people, the surgery people, the plastics people, the nurses, and every other damn person. I knew Brian was ready to go. Dr. Lee said I could go. Regardless of whether I felt ready, I needed to go home.

That morning brought a convenient bout of nausea. My nurse gave me a medication to counter feeling gross and it worked like a charm. Happily, she added that to the order from the pharmacy for all of my medications. After a shower and my Love doing his best pack mule impression, a young nurse wheeled me down to the front doors. Brian hoisted me into the car and we were off enjoying the joys that are Boston roads.

The first hour of the ride home was about what you would expect: painful and long. At a stop for gas, Brian gave me one of the magic anti-nausea pills, some Saltines, and my revered pain medication in that order. After about fifteen minutes, I think I was actually tolerable company.

Upon arriving home, I climbed a million or so stairs to my bedroom and settled in. I have been bathed, fed, pampered, visited, air and cheek hugged, and loved. Focusing on healing, I drink beautiful tea, use oils and salves, read inspiring mantras all created just for me by loving people. The recovery continues to be an odyssey with no predictable trajectory. But we kid ourselves if we think life has any predictable trajectory, don’t we?

The next stretch will include making friends with a blessedly prophylactically cancer-free Body 2.0. I’ll work my way back to momming, snowshoeing, CrossFitting, eventually working, mountain biking, and running. I’ll also continue loving and supporting my loved ones with the same family legacy who are currently fighting breast cancer and this same preventative fight. Somewhere in there will be one more surgery to sculpt some nipples and fix this and that, but I have no doubt I will get my warrior on and conquer that too.

Body 2.0 has been a delicate balance of conquering and surrendering. It has simply been an intense life boot camp all in the name of honoring Mom and her message to me: “Be there for your boys.” I’m here, Mom, and I’m better for it in every way. Thank you, Mom.

acceptance {poetry}