Recovery

By day three, I’m walking and reaching with both arms, getting to the bathroom without a nurse trailing behind, and emptying my own JP Drains; (more on those in minute.)

It's time for me to leave the hospital. Not unlike a new mother coming home after delivery, I am apprehensive about leaving the crutch of the hospital that segued me into my new state.

As suspected, my first day home is awful. Being away from the perfectly equipped recovery room highlights everything I cannot do on my own. And that night, I miss the electronic hospital bed so much that I cry; uncomfortable and alone in the midnight darkness of my family room, I cry. Not for what I’ve been through or what I fear lies ahead, I am simply crying over the discomfort of this very moment.

But like every terrible night, it ends.

I wake up the next day and am that many hours closer to being through this.

My mother stays with us for a week, and then a small army of family members helps us in shifts for another couple of weeks. My mobility and range of motion improves in leaps and bounds almost immediately. If I could just get these JP Drains out…

JP Drains: terrible little bulbs dangling from your exterior, filling with fluid from your interior. (They are used to suction excess fluid from a surgical site, post-operatively.) I have one dangling from each side, which is fairly standard in a bilateral mastectomy.

          

Underneath the skin, they start at the center of my chest and wrap around the outside of each breast; together, forming an “m” shape. The tubes make their way to the exterior on the outer sides of my chest wall, near the bottom of my ribcage, where a small slit was made in the skin. Stitching was used to stabilize the tube to the opening. At the end of each tube is a bulb for fluid to collect. They are, needless to say, awkward, disgusting-looking and immensely uncomfortable. 

The “m” of tubing is tight and pushing against the skin of my chest. The exit sites are tender and irritated. The bulbs themselves are cumbersome and feel perpetually unsterile. Plus, exacerbating their awfulness, they have to remain dry in order to help prevent infection, and so showers are forbidden until their removal.

The right side drain comes out after 12 days; 14 days on the left.

Collectively over these two weeks of JP Drains, I pass a ridiculous amount of time in methodical daydream about their abstraction. I literally count down the hours until the appointments where their removal is even a possibility. With obsession, I picture it over and over again: the ugly, wire stitching getting clipped off, the cord being slowly pulled out, the hole being allowed to close back together, and oh, the sweet relief that will flood over me. 

Flood over me it does. When the daily output of fluid dwindles enough for each of my sides to be free of cord and drain, I am awash in relief. I take a long shower – oh sweet bounty of warm, cleansing water, how I missed you these last 2 weeks. Sponge baths do not hold a candle to your splendor.  And I stop taking the pain medication. I am closed up and ready to heal.

It has been difficult to be uncomfortable for such a prolonged period of time. It is difficult to not do anything but sit around and heal. ...And it is spectacularly difficult to face fears of metastasis, recurrence, and ultimately, mortality. But, one step at a time.

Today, the cancer is out of me. I can heal - and the inflammation in my chest and hips can die away. Perhaps, normal will return to me.

Waking Up is Hard to Do

I open my eyes to a busy recovery area and sharp pain radiating from my breasts.

“It hurts!” I croak out indignantly, remembering the nurse who implied I wouldn’t suffer much pain today. My voice is a horse whisper, but someone hears me and administers more morphine. I keep asking for water; my throat is sore and desiccated from the breathing tubes that had been in place during the 6 hour surgery.

The next several hours are a cycle of me asking for water, sleeping, vomiting water, and being given pain medication.

On day 2 in my hospital recovery room, my catheter is removed and I’m forced to get up to walk to the bathroom. I preferred to move exclusively via the bed being raised or lowered beneath me and find any other movement uncomfortable and frightening.

I’m moving my arms so minimally that I can only reach the cup of water on the bed table in front of me if it is placed carefully on the edge. There is so much tightness with every motion, I’m sure my body is telling me to lay still. The nurses assure me otherwise.

I spend most of the time in my small, quiet room sleeping or just plain resting.

My husband spends the first night with me in the room, but I send him home to Little H after that. I'm too tired to even converse. When my parents come to visit, sitting up and making eye contact while they talk is exhausting. I feel dizzy and completely void of energy.

I stare at the flower arrangements on the counter and I stare out the narrow window. Alternating between sleep and wakefulness at my own will is all I can mange today.

 

 

Simplified diagrams of a mastectomy with immediate implant reconstruction:

 

 

Getting It Out: THE MASTECTOMY

December 1, 2010

The alarm goes off at 4:30 AM, the upbeat tempo immediately waking us from our cozy slumber and reminding us what day it is: surgery day. We’ll check into the hospital in roughly an hour and I’ll face a bilateral, skin sparing simple mastectomy with sentinel lymph node dissection and immediate reconstruction.

Like any long-anticipated day, once it actually arrives, disbelief enshrouds the experience, leaving me feeling like I'm living the daydreams (or nightmares) that led up to it.

The two hours preceding the surgery time are a slow progression of hospital registration and preparation, within which I am the definition of anxious. I am terrified but also strangely excited. Fear pulses through my weak veins, but a larger aura of hope also hangs overhead. I need this and I can do this.

In a surreal haze, I joke and laugh with Bobby as we wait for the minutes to tick by. Remember the time our friend Allan wore white socks with his suit? Remember how Little H used to dance when he was barely a year, shaking his little hips and bobbing his head? Check out my sweet scrub-slippers. Do you think patients fart when they’re under anesthetic? …There is not another person in the world I would rather pass these two hours of waiting with.

Minutes before the scheduled time of surgery, we are no longer alone; the small curtained area around me is abuzz in activity. The surgeon’s assistants and interns stop by. Nurses come and go. The plastic surgeon and the breast surgeon come to see me. Am I ready? Do I have any last minute questions? The minutes are ticking toward 7 AM. The anxiety is building.

 

I am wearing my light-pink eyelet headscarf, my favorite. And I have taken great care to paint my fingernails. Somehow, knowing the soft, pink-chocolate color graces my nail beds makes me feel slightly less dehumanized. Something about me will look nice, as though that will remind the surgeons and nurses that I am a real person on the table, dramatically impacted by their every move.

If I am going to be a bald, skinny, exposed body in there, (possibly farting?) and with tubes going in or out of orifices, at least my hands will look lovely.

A nurse comes in to start my IV and has so much difficulty she ends up on the floor next to my bed, sitting on the linoleum and holding my hand down in her lap to let the blood drain down my arm. My tired chemo-subjected veins are a challenging stick. The nurse is using a more painful spot, on the top of my hand. With words I take far too much to heart, she comforts, “Don’t worry Honey, this will be the worst pain you’ll be in all day.”   

Then the anesthesiologist arrives. She is gentle and reassuring. As she stands over my head, I stare up into her bright blue eyes and long, mascara-covered lashes. I will remember those eyes.

And then I’m moving. It’s time to wheel my bed back to the operating room. Surely, the pounding of my racing heart is ringing through the white corridors.

I am devastated by having to say goodbye to Bobby. Merely anticipating this moment has brought me to tears repeatedly over the last month: the separation; the deep solitude of a terrible journey that always comes down to being mine alone to bear.

I want to look back at him but I can’t get my head around the edge of the bed before we’re through the swinging doors. 

I’m pushed through the longest hallway I have ever seen, past operating room after operating room. People in scrubs and face masks move in and out of my strangely low vantage point as I’m wheeled along. I am dripping tears and pulsating fear.

Finally the hallway ends and we enter the last room on the left. It’s large, bright, and very white. I’m trying to take it in quickly through a vision that is becoming increasingly blurred as the pre-anesthetic takes hold. What are all those supplies piled on the buffet-sized table? That can’t all be for me. There’s my plastic surgeon, in the corner, typing into his cell phone. The white, white walls disappear into the white ceiling.

With several people assisting me, I move from the portable bed onto the operating table in the center of the room. The anesthesiologist sets the mask over my mouth. Within seconds: darkness.

 

Tomorrow

Tomorrow, I will have a bilateral mastectomy.

Tomorrow, I will face my fears. I will go in for my first ever surgery, and a pretty brutally drastic one at that. I will learn more about my tumor: it's size, exact type, if it has spread outside of my chest wall, and how successful the surgeons will be at removing it. I will start a difficult road of recovery. I will go forward with a body I will forever thereafter see as mangled; strange.

But tomorrow is also the day so critical to my survival, the day that will save me. A slowly multiplying mass has been spreading across my chest for roughly the last decade, inching me toward a terrible death. Tomorrow it will come out.

On the eve of this milestone, there was a small procedure that needed to be performed. As directed, I went to the Nuclear Medicine facility to have the sentinel lymph node(s) located in my underarm. Lymph nodes are often the first place breast cancer spreads to, so it’s common for at least the sentinel, or “gatekeeper,” nodes to be removed for biopsy during a mastectomy. The lymph node biopsy is a strong indicator of whether or not metastasis has occurred.

The procedure to locate the sentinel node or nodes is a two-part process. First, dye is injected into the breast – for me, injected around and under the left nipple. (Given the location of my tumor, the surgeon requested the dye enter right under the nipple.) As one may imagine, nothing pleasant can come out of bundle of sensitive nerves and a syringe.

There were four injections and each was excruciatingly painful.

Then, for the second part, I returned after a couple of hours of catching my breath, time enough for the lymph fluid to carry the dye into the first, the sentinel, lymph nodes under the arm. The radiologist took an ultraviolet photo, entrusted it to my care, and marked the spot in my armpit with a small, black Sharpie. Yes, the high-tech procedure culminated with a Sharpie-x in my armpit.

I was sorry I had to say goodbye to my left nipple with such violence. Tomorrow it will be cut off.

Tomorrow.

Feeling Up My Friends

I saw and felt another woman’s boobs for the first - and second and third - time this week.  And it was quite nice.    

Although far from the traditional ways pleasantness and intimacy are expressed with breasts (such as with mother/child or wife/husband), closeness and bonding was certainly conveyed through these three women who bared their beauty and their scars for me.

I saw how mangled my natural body will become. I felt how heavy and hard my new breasts will be.

With the date of my bilateral mastectomy on the horizon, I’m now ready to channel attention into surgery and reconstruction details and options. 

 

I seek out women with implants to share their experience and possibly their results with me, which is not uncommon within the sisterhood of survivors. We want to help those behind us in the journey. Plus, well, by the time you have been cut open, scooped out, and rebuilt, not a lot of timidity remains.

There are two main techniques for reconstruction, with several nuisances available within each. One method uses implants and the other uses transplantation of tissue from another area on your body.

The latter, which are called tissue flap procedures, have been ruled out as an option for me, as I currently lack a sufficient excess of fat to fill two breasts. I am not keen on the added invasiveness of tissue flap surgeries and, frankly, am relieved to have the option taken off the table. One less disturbance of the natural state of my body. One less life-altering choice to face.

This leaves me with implants: silicone or saline filled pouches. The vast majority of women select silicone, finding them to create more natural looking and feeling breasts.

There are some lingering disputes about the safety of silicone, but my surgeons and doctors assure me of their trust in either option. I waver undecided until just before the surgery.

 

Saline. Mostly for my own peace of mind, I will decide to go with saline. They will create an inferior result, but in turn, offer me some relief from worry that I have caused or exacerbated the inflammation that will flare in my chest for years to come.

At this point, I don't really understand how just how odd my chest will feel after the surgery - and for the rest of my life. But I also don't care all the much. Yet.