Fall Out

The last time I had short hair, I was five years old and Freddie King had turned me into a boy. We’d been playing on the swing set in the backyard that connected our two properties. It was October and my zip-up corduroy jacket was the russet-red of the oak trees towering overhead.

Our sneakered feet pounded on earth packed hard to a dark shine as we took a running start before taking off, legs out-thrust, toes to the sky. As we flew, Freddie said, “Do you want to be a boy?’

Freddie was only a year older than me, a round little guy with sandy hair and a cowlick, so I’m not sure why I thought he could accomplish something so significant. But maybe at five, I didn’t think it was such a big deal, for I said, “Sure,” without giving it too much thought. I didn’t even ask how he'd do it.

We slowed our swings, heels dragging in the dirt to stop us, then jumped off and marched to his house. I followed him into the kitchen and waited while he dug through a drawer, shoving aside a box of thumbtacks, a bottle of Elmer’s glue, some loose rubber bands, a ruler and a screwdriver. Finally he located a pair of scissors.

Ah. Scissors. What was to be cut? Why wasn’t I alarmed?

For I’d not realized that the key to gender alteration was simply a haircut. So easy.

Freddie attacked my chin-length pageboy, his gaze intent, tongue caught between his teeth. When he was done, he stood back, a smile of satisfaction creasing his cheeks. When I checked my image in the mirror over the bathroom sink, I had to admit, he’d done a good job. I did look like a boy. Sort of waifish and ragged, with a trace of pink scalp showing here, an overlong wisp of hair left there.

When I scampered home and banged open the back door with the proud announcement, “Look, Mom! I’m a boy,” my mother was horrified. She’d been content with a daughter after all. A desperate trip to the barber helped only a little: the only thing that really worked was a total cover-up with a red cowgirl hat. Have to say, in old pictures of that year, I look pretty cocky in that hat.

My nephew Christopher, with his worn jeans, leather vests and boots can carry off a cowboy hat. I’m not sure that I can anymore. So I’ve purchased a wig and two turbans, and my sister Rita’s friend has supplied me with a pile of scarves from her days of chemo-caused baldness. I’m as ready as I can be for the day when a lock of hair twisted idly around my finger comes loose in my hand.

I’ve received a lot of advice about how to handle the hair loss from those around me: “My friend just shaved her head when it started to go. She wanted to show those follicles she was still boss.” Another suggested I cut my hair now and donate it to “Locks for Love.” “Maybe you’ll feel empowered,” she’d said.

I’m just not ready. I don’t want this to happen at all, much less do something before I have to. It’s stupid, I know, this angst over a temporary condition. Such a small thing compared to other losses and risks. But it has been a comfort through the diagnosis, the biopsies, the MRI, Pet scan, echocardiogram, and boob-exchange (forty-three year old friends for slightly bigger, round, vinyl-rippled, somewhat hard, but perky boobs) to look into the mirror and see myself, eyes a little sadder, but face and hair same as always.

A scalp-capped skull instead of my brown hair with its highlights and lowlights framing my face? It’s hard to think about. Hell, a bad hair day is tough on self-confidence.

Other women get this. When their faces fall at the news of my cancer, they almost always ask, “Will you lose your hair?”

At times, when I’ve felt the evidence of my surgery is obvious - the bulge of the drains under my shirt, the pink bracelet – I’ve been aware of meeting the eyes of women I encounter in Shaws or Lupes Drugstore. Every time, I’ve received smiles of such warmth that I’ve thought, “They know… and they’d understand how I feel about my hair.” And, as has happened in almost every conversation since my operation, I believe that if we fell into a chat before the stranger ran off to pick up a child at school, drop off dry cleaning or buy groceries, each would have a story of a friend or mother or sister and breast cancer. So I smile back with sincere warmth as well, because we are in this together. We are all women. We have breasts. This can happen. Depending on the day, I feel like saying, “Have you had a mammogram lately?”

I bought a wig and actually, it’s realistic and becoming. But will it be itchy and hot once I’m bald? Will it stay in its box in my closet because I can’t stand to wear it? Will I be a turban-lady?

So, I’m going to wait for the day when I wake to a hair-littered pillow to play with the scissors. I’ll go to a short shag, then a bob, then a pixie cut. I haven’t had short hair since I was five, but I wore it with a cowgirl’s attitude then.

* * *

The fall-out started when I washed my hair before going to a Conservation Commission meeting. I’d wrapped a navy blue towel in a turban around my hair after stepping out of the shower. As always, I left it up while I brushed my teeth and applied eyeliner and blush. When I shook my hair loose, the towel was coated with silvery strands.
Omigod, omigod, it’s happening. I thought fearfully. And that’s how I felt. I was afraid. I waived the blow dryer and brushing. My hands trembled as I fluffed my still ample tresses with cautious fingers. I selected a shirt mindful of what might better camouflage the situation. Certainly not black. A pale aqua tee shirt? Yes.

At the meeting, every one of my furtive glances at my chest revealed a scatter of hairs. Inconspicuously, I hoped, I gathered them in a nonchalant sweep of my hand and dropped them on the floor. No one’s looking. They’re focused on the meeting, taking notes… I’m sure someone will vacuum in the morning…

After the meeting ended, I went home to my husband, Dave. “It’s happening,” I said. He reached out for a hug and I snuggled in. I felt shaky, but I don’t remember crying.

“I’m cutting it off,” I decided suddenly and ran upstairs. Pulling my hair on top of my head, I tied it in a ponytail and took my scissors out of the cabinet.

“Are you sure you want to do this so soon?” Dave had followed me upstairs and watched my face in the mirror.

“What more do you want, Dave? Look at this!” I raked my fingers across my scalp and held up, accusingly, handfuls of hair.

“Do what makes you feel better,” he said gently.

But he was right. I was rash. I’m glad I didn’t shave my head or go for the pixie cut then. I cut off five inches, but it took two weeks for the majority to fall. The gradual loss made it easier I think, but once it was over, my relief made me realize the anxiety of every combing, every head toss, every shower, every touch of my head to someone else… for I was generous in lavishing hair on others.

Every hug left residue on shoulders. Each kiss risked a little spare hair. On the way to the car the other day, my daughter, Casey, sputtered and snorted, “Pft, pfft, pffft! I must have walked through a spider web!” No. It was not a web. She wiped her lip-glossy mouth and held up a straggly offering of Mom-strands.

We had to laugh.

I hadn’t seen my nephew, Christopher, since my surgery, so his hug on a recent visit was long and loving. When we pulled away from each other, he bore an unkempt fu manchu, my hair, caught in his scruffy beard.

Again, laughter. Sharing, sharing.

For now, for a short while longer, I can pass, although my hair is old-lady thin and wispy. Not my best look. But I took my wig for its maiden voyage yesterday – a brisk walk with my dear friend and walking buddy, Michele, and then dinner at Barcelona with my sister Francie, her husband Matt, and my nephew Campbell. Breezes did not budge it, other restaurant patrons were oblivious, and my loved ones were complimentary. Success. And I felt better.

When I went to the restaurant ladies room and caught a glimpse of myself in the mirror, I smiled. There I was! Not the gaunt, unhappy, almost-bald woman, but me!

An Earth, Wind and Fire song came over the speaker. I eyed my mirror-self and gave her a grin. Then we danced, just a gleeful little body shake, together. Maybe when this is all over, I’ll get me a red cowboy hat.

Bacteria and Bubbles

Once again, I’m in a doctor’s waiting room. This, however, is a far cry from the spacious, trellis and flower muraled room at the breast center. A far cry from the comfy chairs tucked in quiet nooks at the plastic surgeon’s office. A far cry from the bright, windowed drip room at the oncology center. Here at the infectious disease specialist, we patients sit elbow to elbow – with our various diseases – in straight-backed chairs that encircle the room.

A large, low, table strewn with magazines squats before us, its offerings within easy reach of every chair.

Four seats over from me, a heavy blond woman has propped her swollen, scarlet-red leg on a pillow. A cadaverous elderly woman five seats to my left smiles kindly in my direction. The friendly Hispanic woman next to me reveals, after we’ve chatted for twenty minutes or so – breath-to-breath – that she’s “not feeling too good. Kinda achy and flu-ish.”

Great. My smile remains in place, but I excuse myself to go to the ladies room. I’m sure there will be a hefty bottle of anti-bacterial soap in there. An exploratory sniff as I leave the waiting room does not reveal the scent of Purell, although a constant, cleansing mist of the same, wafted through the air system would seem an excellent idea.

After I wash my hands with plenty of foam and hot water, I gingerly re-take my seat, wondering what disease might have occupied this chair before me. Consumption? T.B.? Swine flu?

I select a well-thumbed People magazine and mentally flash on all of those thumbs. I sigh. I will wait a little while before dashing back to the bathroom and the anti-bacterial soap.

Needless to say, I’m not here today doing research. I have an infection myself – a fierce purple redness in the site of my former right breast that started with a fever a week ago. When I asked my sister-in-law Deb, a nurse practitioner, how I might have contracted this, she said, “Bacteria can sneak through any tiny opening in the skin. The chemo has compromised your immune system and you have two foreign bodies in place which are susceptible to attack.” My implants. And they are the cause for worry. I met with Dr. Philipson and Dr. Alton, my surgeons, at the hospital yesterday and they explained that a bacterial film could form on the implant requiring its removal if the infection persisted. After one look at my purplish skin, they sent me upstairs for an immediate intravenous anti-biotic and set up this appointment with the infectious disease specialist.

After a two-hour wait, I meet the doctor. He is boyishly effervescent, swarthy-skinned, smiling and handsome. He examines my flaming skin and prescribes a two-week course of self-administered IV anti-biotics. Yet another fascinating new experience to add to my medical journey.

After a quick session with the anti-bacterial soap and hot water in the rest room, I head home to await the infusion nurse.

Dave, meanwhile, has been out purchasing a squadron of germ-fighting soaps. I grew up with a pediatrician and a mother who believed, rightly I think, that children needed a daily portion of dirt to build immunities. In my current state, however, I am a hand-washing machine. Why, who knows which door knob or encounter at the grocery store, school, or a party initiated this infection? So Dave arrives home from Shaws with an impressive supply of anti-bacterial pump soaps for the kitchen and bathroom sinks, and anti-bacterial Dial soap for the showers. I have individually wrapped, Purell-soaked, towelettes for the car and my pocket-book, as well as a mini-bottle for my desk at school. I am sick at the thought that I could have prevented this infection through hyper-hygiene. Never before has health seemed such a responsibility.

Shortly after two large grocery bags of medications, tubing, alcohol swabs and syringes are deposited on my kitchen counter by an affable, but sweaty, deliveryman, Nurse Nicole arrives. She is pleasant and efficient as she lays out the series of saline flushes, meds and anti-coagulants that I will self-administer. She slides an IV pole to its full height (my own IV pole!) and untangles a five-foot length of tubing studded with clips and dials. Dave joins us with pen and paper in hand and the two of us scribble step-by-step notes as Nicole explains the process.

To start off, she affixes a needle access to the port that was installed in my chest three weeks ago for chemo. A small blue nozzle, or clave, is suspended from the port and I will connect the various meds to that clave for each infusion. As Nicole cautions me to wipe the clave carefully with alcohol between each stage of the process and warns me not to touch this plastic pointy thing to that plastic screw-top thing, my unease grows. Thank God Dave is writing down every step. Thank God I am reasonably agile of mind and fingers. What if I were eighty and alone?

Nicole guides me through saline flushes, a push-medication, and the tricky preparation of the drip IV. Once the drip is underway, I notice bubbles in the IV line. There’d been bubbles in the syringes as well and Nicole had demonstrated how to pull down the plunger and then express, slowly, a few drops of liquid before injecting whatever fluid it might be into my chest, but bubbles remained anyway.

“Don’t worry about them,” Nicole reassures me as I point to the line. “You need, oh, six inches of air before you have a problem.”

“But on T.V…”

“Yes, well, you don’t have to worry.”

“What are the chances I’ll kill myself with bubbles?’

“Not gonna happen,” says Nicole as she packs up supplies, pulls a pen out of her purse and proceeds to sift through pages of paperwork.

Dave and I have our lists and Nicole gives me a typed version as well. Still, I’m nervous about doing this on my own; day after tomorrow, Dave will be back at work. I’ll be alone with my IV pole and drip, scanning for that six inches of air. But the amazing thing is, despite the despair I felt initially about this infection, the possibility of losing the implant, and the discomfort of this needle access on my chest for two weeks….I know I can do it.

I have spent my life worrying about just about everything; I have brooded, Eeyorish, over my lists and obligations. But I have learned something about myself over the past six months – I am more resilient than I’d thought. Cancer, chemo and infection are hard, and yet after the initial reel into darkness with each complication, I bounce back. With Dave, friends and family as buoys, my strength and spirits remain fortified, afloat.

Glad I Had That Mammogram

It’s been a week since my surgery. I feel so good as I strut in for my follow-up appointment with Dr. Philipson that I practically high-five the receptionist. Theresa, the doctor’s nurse, sticks her head out into the hallway and I zip over to give her a hug. I am all smiles and she is warm and calm as always. Maybe she seems a little sedate, in fact, but I write it off as her way.

Dave and I take a seat in the waiting room and I beam at the women who are flipping through magazines, glancing up at the approach of footsteps, fingering the clasp of a pocketbook, each with her own fear and story. In my near-giddy state as one who has made it through surgery and is healing like a champ, I want to assure them that they’ll be fine. That they’re in the best hands possible and that the anesthesia cocktail is a dream. That recuperation hurts a bit, but the medications soften the edge. And that, if their people are anything like mine, they’ll be cared for with unbounded love.

Speaking of my people, Mom and Dad are coming for the weekend. They’ll probably beat us home in fact. Phone assurances have been inadequate; they want to see me for themselves. Like Dave, Mom has said, “I wish I could do this in your place,” but she will see that I don’t need a surrogate; I’m great and she needn’t worry.

When my name is called, Dave and I hop from our seats and saunter down the corridor to Dr. Philipson’s office. I give her a hug too, but her eyes do not reflect my jubilation. We sit across from her and I don’t really follow what she is saying about “micro-invasive cells.” I’m still smiling because the significance does not register. My lymph nodes were clear. The cancer is out. What more is there?

Apparently, the pathology on the breast tissue revealed something else. Cells that could send out seedlings. Cells that require preventative action. “The good news is that a drug, Herceptin, has been made available within the last two years that targets these specific cells,” says Dr. Philipson.

Wait. She’s saying it doesn’t end here. She’s talking about chemo. Scarier than cancer. Chemo.

“You did the right thing in having the double mastectomy,” she concludes. “but I know this is not what you expected. I’m so sorry.”

I am slow to process her words. I think about what might have happened if I’d not had that mammogram. What might have happened if I’d not gone for the double. What might have happened if the medical world had not continued to paw through my breast tissue in some lab somewhere even after removal.

I could have died.

But I don’t feel relieved. I’m thinking about chemo. And I’m thinking about Mom and Dad waiting at home for me to come dancing through the back door, maybe minus a drain or two, to be doted on. Again, I must tell them hard news.

We leave the office and I call my parents by cell phone. I tell them about Herceptin – so new, so specific to my case – and remind them that all of the other good stuff still holds true – early stages and clear lymph nodes and margins.

Mom and Dad rush out of the house as our car pulls up. They are somber, but glad to hold me, to see me. To see that I’m the same, minus a few body parts.

For lunch, we sit on the back porch and pick at a platter of tuna chunks, olive tapenade, roasted peppers, artichoke hearts, cheese and Italian bread. The food tastes fresh and tangy, but it’s hard to sit still. I restrain myself through the meal, then say,” I’ve gotta make a few calls.”

I fly upstairs to call Wendy. She had a double mastectomy two years ago and has been a voice of experience and comfort since I was diagnosed. She did not have chemo herself, but says, “Lea, I know many women who are going through treatments now. We still walk together; they go to work, they feel okay. There’s some fatigue, but they’re not sick. They look great. This is a disappointment, but you’re going to be fine and chemo will make sure of that.”

Okay. Good. Thanks. Breathe. Breathe.

I call Joanne.

Joanne had a double mastectomy thirteen years ago. She did have chemo. And she has a spirit that barrels through that phone line to hug me and lift me up.

“You want this, Lea. Believe me. You don’t want little cells floating around making trouble. Chemo’s so different now. You won’t throw up. I know you won’t. You’ll be tired maybe, and then you’ll be through this and you’ll be fine. You want this.”

I want this. Well, not exactly, but Wendy and Joanne have said the right things and I can breathe again. I am fortified. And I can go back to the porch and tell Dave and my parents what my two friends said and I can say it with cheer and confidence. And they will believe me as I believe Wendy and Joanne.