Clipped Wings

A Christmas where I couldn’t quite lighten my heavy heart came and went. I tried not to let my family see the pervasiveness of my sorrow, but this is clearly shaping into a season of darkness. Hope and gratitude are slipping out of my tired fingertips.

With the passing of the holidays, we return back to our quiet house with bags to unpack and a fridge that needs filling. My medical appointments resume and welcome us right back into the fold that is our lives.

I meet with one doctor and discuss the recommendation that I have my ovaries removed. I reluctantly dismiss lingering hope for a future pregnancy and plan an oophorectomy (surgery to remove my ovaries) for the coming months. I meet with another doctor and have blood drawn from my ankle, because once again, my damaged veins will not spring forth for the prodding nurses. I revert back to my safety chant, “one, two, three” to help me through the failed attempts. 

I ask the Oncologist my odds for survival, in a grasping attempt for as much information as I can attain. After a long speech about the meaninglessness of odds, he tells me the numbers. I can’t stop hearing them: 80/20. 

The survival rate, the chance I will still be alive and cancer free in ten years, is estimated at 80%. Conversely, statistics indicate there is roughly a 20% chance this will not be over for me. Aggressive treatment and preventive measures aside, there remains a 20% chance breast cancer will show up somewhere else in my body over the next decade. 

I am trying to understand that I might die soon, and that I have to live with that.

Meanwhile, my friends’ lives are moving on. They have gone on to have second and third children. They are having baby showers and buying houses, changing jobs and taking trips. The contrast between life carrying on normally for them and my sphere of challenges is a painful reminder of what might have been. 

I long to be one of them again, to associate mortality with old age, to live without prevalent fear or pain, to be able to take things for granted. 

Instead, I find myself skittering around like a wounded bird. I can’t lift off the ground and empathy weighs heavy on my back, as though I’m suddenly in-tune with any suffering around me. The sadness of the world is too much to ache for.

I walked across the lobby of a medical building today behind a little girl wearing what was clearly a wig. She couldn’t have been but five or six, walking lightly toward the infusion suite and holding the hand of what must have been her daddy. How does any man deserve the pain that father must endure watching his baby go through chemotherapy? 

…How do I hold it together when I lose new friend after new friend from my support group?  …How do I continue to understand God as loving and gracious amidst trying to teach myself that the allowance of suffering is necessary on earth?

I’m just a little bird, fluttering around on the ground. It’s okay if I leave this life, I attempt to convince myself. Because I’m not sure how else to cope with 80/20 yet. 

1, 2, 3, CT

Normal arrives slowly and enshrouded in relativity.

Shortly after my surgery, I receive an offhand recommendation from my oncology nurse to get a CT, or CAT scan, which is a special X-ray that produces cross-sectional images. Since there had been some worry over my tumor marker numbers creeping up pre-surgery, the nurse automatically referred me. I obliged with no idea what was in store.

Upon checking in for my first ever CT scan, I'm informed of the need to drink contrast every 15 minutes for the next hour before the test. I'm offered a variety of flavors of thick, toxic looking stuff in plastic bottles marked "Barium Sulfate Smoothie" -  appetizing stuff, starting right with the name.

I select vanilla and am pretty violently cringing, gagging, and shuddering through the first cup - as in, the first 1/4 of what I'm supposed to drink. I look around the waiting room instinctually, as though to commiserate with anyone else brandishing Barium; my widened eyes search for someone to give a “Can you believe this stuff?” nod to. No one else is suffering the smoothie at the moment though.

Like a child, I reach up and plug my nose with every gulp and regret having to let go to breath; as soon as air hits my tongue, my shoulders are scrunching up and I'm involuntarily shaking my head from side to side. Wow, this is some "smoothie." 

My sister-in-law Jamie, who has kindly accompanied me on this adventure, keeps moving the trash can closer, obviously fearing I’m going to vomit. Oh no, there’s no way I’m letting this stuff come back up. 

Just before the 30-minute mark, when it's time to down a third cup, even though I've barely finished the second, Jamie and I go back to reception to swap the second of the two bottles of vanilla for another flavor. We ask our barista/receptionist for his recommendation and head back to the waiting area with a “mochachino.” I'm afraid it's going to put me off of coffee forever, but no need to worry as it tastes absolutely nothing like coffee. He is right though, it is slightly better. 

50 minutes in and I'm pretty drastically behind on finishing both bottles. I'm alternating between rationalizing body mass ratios to ounces necessary and reverting to childish impulses to hide the unfinished bottles. 

At 5 minutes till the hour, the doors slide open and a radiologist appears wielding my chart. She waves me back and doesn't even glance at my 2 half-full bottles. Apparently Barium Sulfate brings out the immature in me because I'm grinning like a child who narrowly escaped getting caught misbehaving. Hee, hee, she didn't even notice I didn’t finish it all. 

As soon I'm through the door, childish impulses as well as hopeful rationalizations vanish, and I simply mention that I didn't drink it all. "No problem; you don't need all of it. I'm sure you were tortured enough," the long-haired radiologist says with a smile. 

What? That's it? No sending me back out with admonishments? No failed test?  Alright!

Wait, could I have gotten away with drinking less than I did?

The comically uncomfortable ordeal from the waiting room is about to fade into insignificance. A real and serious torture is lying in wait ahead.

I change into a gown, ease myself onto yet another examination table hanging out of a large, expensive-looking machine, and am informed the second part of the contrast is administered through IV. Oh no, not my veins! Just give me another bottle of smoothie. Seriously, I’ll take anything to avoid involving my veins.

The veins in my arms are small, roll when pricked, and have been pretty severely taxed over the 6 chemo infusions. My left arm can no longer be used, since I've now had lymph nodes removed on that side and so it’s at high risk for lymphodema. This limits me to the poor option that is my right arm, which has already taken a pretty hefty beating. I had a chemo infusion go bad in this arm; the poison leaked and a whole part of my forearm is still discolored and numb. Then there's the busted vein on the top of my right hand, where the IV was in for 3 days while I was in the hospital for surgery.

All around, I’m not in an ideal candidate for either (A) getting a large needle into a vein or (B) keeping it there without the vein collapsing when fluid is pushed through it.  

1 radiologist, 2 radiologist, 3. 1 vein-finding light, 2 warm packs, 3 sheets. I'm still cold, dehydrated, and possessing uncooperative veins with only one usable arm. 1 prick, 2 prick, 3.... 6, 7 and still no vein that's walls don't collapse when they start injecting the contrast fluid through it.  

No one wants to be stuck with a needle and of course not repeatedly; a digging, damaging needle.

Lying there on that table, I am not a person. They don't see me. I'm just an arm - a difficult prick that might reflect poorly on them if they fail. Just an arm. Meanwhile, the rest of me is shaking, starting to cry, and wishing I were back in the waiting room drinking toxic smoothies while Jamie shoves the trash can at me.  

I try to be strong. I turn my head away from the white coats hovering above me and count the knobs on the cupboards. And then I count them again in Italian. I get halfway through Annie's "Tomorrow."  When I lose the focus to come up with lyrics or languages, I simply stare at the cupboards and chant desperately, "1, 2, 3.  1, 2, 3.  1, 2, 3" over and over again. 

With every locatable vein tried and failed, the technicians finally give up and run the scan without that portion of contrast. Their prodding efforts are for naught.

I'm so glad my oncologist's nurse recommended I get this fairly-ineffective test, just as a precaution. Barium Sulfate and vein exploration is a recipe for fun by any count.

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.

Let's Rock: Part II

Eventually, we step outside the studio to give the producer and camera men a couple minutes to decide what else they need. Thankfully, it’s cooler now, as the sun has ducked behind the buildings.

A hip-hop group has vacated one of the smaller studios and is lounging around the picnic table where the remnants of our earlier wait still litter the tabletop. Little H immediately notices the boxes of juice pouches and takes off toward them. I’m banking on them being empty by now and remain a few paces back, observing him circle the table and then squeeze his way into the center. He’s like a parched hyena on a calculated mission to wedge himself between the massive rhinoceroses for a place at the pond.

After successfully procuring access, he makes his lunge for the box, fully confident the sustenance he desires is within. Oh, but it’s just out of his reach; he can’t quite get his claws on the coveted box across the table. Fortunately for him, his determination will not go unrewarded. The roughly 300-pound man (perhaps rapper, perhaps bouncer) with tree-trunk arms seated to his left has decided to help him out. Tree-Trunk has found a remaining juice pouch and is carefully removing the plastic and inserting the straw. It looks miniature in his palms.

“I hooked a Brother up,” he says to the little hyena next to him, who suddenly looks very tiny and very white. With straw in mouth, Little H reaches his small fist up in a perfect gesture of gratitude: he fist bumps Tree-Trunk casually. My content little hyena then proceeds to seat himself, completely oblivious to how out of place he is, between his new pal and a beautiful woman with huge hoop earrings who has just erupted into laughter.

Success for the little guy: he has acquired yet another juice pouch, which I’m pretty sure is his sixth.

Not surprisingly, in his conversation with his daddy that night about his day, Little H will remember that he “went to the music place” and that “they had juice there.” Simple as that. I’m broadening his range of experiences and impressing him with bountifully flowing juice.

 

The music video will come out a couple of months later. There will be glimpses of my Little H and a few shots that include our blurry heads. Nonetheless, the hot day at the studio with my ladies and my hyena made for an interesting experience - and supported a cause that is, quite literally, near to my heart.
 

 

Let's Rock

Part I (of a two-part series)

 

It’s a long, slow drive up through West Hollywood. The streets are old and heavily traversed. Little H and I are on our way to a recording studio, where we’ll spend our Friday afternoon helping with a music video for a song about breast cancer.  

We’re background for the video; unimportant extras really, but we’re real life and we’re here to be a part of it. Or rather, we’re almost there.

Parking is a quest of time and patience all on its own. I eventually shed my car in a semi-legal space a long 4 blocks from the covert brick building with the address I was given. I’m sweating by the time we’re buzzed into the small, gated, parking area outside the studio. On this unusually hot October day, I keep imagining whipping off the black, rayon scarf I carefully wrapped around my bald head this morning. What tiny breeze there is would then be free to blow across my bare scalp, cooling the sweat, cooling across my face, so comfortable… Okay, snap out of it. We made it; we’re here. If my kid can keep his clothes on in this heat, I can keep my headscarf on.

I give Little H a juice pouch and find the shadiest spot that I can to stand my shiny black head in.

There are ladies everywhere, some that I’ve met at prior events, a few that I’m introducing myself to. Some, I notice proudly, are here because I invited them. Their familiar smiles are welcoming and kind. I’m starting to get used to spending time around my diverse new group of survivor friends - my ladies, as I’ve taken to calling them. They’re all older by a least a decade or two, but we share a strong commonality and I enjoy their company.

I’m discovering this to be one of the ways I cope: latch on to positive, take part, carry on. I’ve been embracing anything good that surfaces in this storm, including showing up at fundraisers and shoots, retreats and seminars, and letting new and diverse friends brighten my days.      

Most of my ladies have met Little H by now. I bring him along to events on occasion – generally because I like to spend time with him when I’m well enough to do so, and occasionally because I don’t have a choice. (I’m apparently an aberration in West Los Angeles as a mother without a nanny in my employ.)

Today, Little H is in luck; a couple of other moms have brought their middle school aged children and they’re showing mild interest in his inclusion. They eat tortilla chips and drink juice together before scattering among the small crowd outside the studio.

The band comes out to meet us, a bunch of young, Australian rockers. The drummer’s mom was diagnosed with breast cancer last year and they wrote a special song for her, which they’ve been performing to raise awareness and funds for the cause. We shake hands and make small-talk. I wonder if this song will help them make it big. I wonder how much it will contribute to breast cancer research.

Little H brings me another juice pouch from the picnic table of snacks laid out for us. I’m too hot and too distracted to dissuade him, so I open it lazily between handshakes and photographs. We’re about to head into the studio. 

Inside, it’s a loud and private concert for the 20 or so of us ladies gathered around. The next couple of hours are basically a succession of the band playing while we smile and tap our feet, clap our hands and cheer from the periphery.

The music rocks. The cameras are big. Someone has given Little H another juice pouch.     

Little H (in his breast cancer head scarf) rocking with the band

He and I in the audience

 

Eclipse in the Snack Food Aisle

I’m ambling through the grocery store, trying to think of everything we could possibly need so I don’t have to come back in four days. 

Little H is with me, as always. I resorted to bribery to get him into the cart without argument this evening, since his daddy lets him walk, a concession I’m not willing to make. Thank goodness for that mini lollipop I had the foresight to shove into my purse. (It’s late in the day and we’re both tired; don’t judge me.)

I’m midway through the snack food aisle when my cell phone starts to ring. I decide to answer it, in spite of my aversion for public cell phone conversations, and am rewarded by finding my Rheumatologist on the line. (The doctor I see for arthritic problems.)

Missing a doctor’s phone call is like missing an eclipse - it doesn’t occur often, it's gone quickly, and there is no recreating it. Catch the call or make an appointment; you’ll never get a doctor to call a second time or get on the line when you call back. Not for, oh I don't know, another year or so anyway.

I am scrambling for a receipt, coupon, or other shred of paper to take notes on, if necessary. We’re discussing the possibility of my going back onto Enbrel, the shots I give myself to quell the inflammation in my joints, while I’m simultaneously undergoing chemotherapy.  Dang, my body is messed up.

Basically, I’m describing my intimate health issues at 6 PM in the middle of a crowded grocery store. People are wheeling by in search of potato chips as I talk about my upcoming mastectomy date.

You need some crackers? Right there by the bald lady talking about drugs and surgeries. 

At least Little H is being quiet. Actually, he’s pulling boxes off the shelf and throwing them into the back of the cart. Packages of cheese crackers and some kind of Mexican cookie are flying in with a pace that suggests he expects me to intervene at any second. Whatever. 

After I hang-up, it takes me a good 5 minutes to empty my cart and restock the cracker and cookie aisle, but I’m jubilant that I’ve talked to the doctor. I avoided an office visit in a season that is crowded with medical appointments and copayments.

We decided I won’t be going on Enbrel again until post-surgery, a decision I’m comfortable with. I can continue to manage this spell of pain and immobility, because how much narcotics does a person really want to put into their body at once? And who knows, maybe once the cancer is out of my system, so too will the need for an autoimmune disease drug be relinquished.

Cheese cracker anyone?