Wednesday, August 15, 2012

Prison Hair Series 1

Department of Corrections for Hair
I've decided to document my growing hair in a series of mug shots that I will call my Prison Hair Series.  Here is the first installment. Notice the Jane Fonda fist of power in the front shot.

If you all could help me, and let me know your vote on the important issue of hair color.

Stance 1:  Leave hair the color it currently is and see just what grey might do to my face.

Stance 2: Buy that box of semi permanent auburn and get thee to a red color hence.

What say ye?

Tuesday, August 14, 2012

Take Me Away From All This Death

I don't even know how to talk about the sorrow I feel. It sits like a cold, jagged space in the middle of my chest.  This Friday I fly back to Wisconsin to finally bury my sister Melissa, the sister who died of a combination of pneumonia and heart attack just before Valentines Day 2011. Her death was so close to the holiday that when I returned to my home after the funeral, I was greeted by a Valentines Day card she likely mailed to me the day she died.

I received the call telling me my sister died while I was talking to a tattoo artist about adding to a piece I'd had done in memory of my mother who had died in August 2008.  That tattoo is a heart with the words "I love you forever" curved around the bottom.  My mother always signed every card, letter, and email this way, and I wanted a permanent imprint on my body to remind me that my mother still loved me forever.  The tattoo artist and I were discussing flowers when my nephew Josh called.  I didn't realize what he was calling about, so I asked if I could call him back.  Once I left the studio and returned his call, hearing the news, I wandered the streets near the studio, not remembering where I had parked my car.  I was stunned and I was in shock.  I walked in that confusion for an hour until I finally found my car. I flew home to Wisconsin the next day to attend my sister's funeral.  My beloved, beloved sister.

Funerals are occasions to get things done. Talk to the funeral home. Order the programs. Create a picture board in memory of.  You're so busy, you don't have time to feel the full brunt of the grief. But when I walked into the room to view my sister's body, that is when I broke down. And when I say broke down, I mean sobbing. Deep, deep sobbing that weakened my body and drew me down to the ground.  My sister was dead. The sister who sent me care packages. The sister who called to make sure I was okay. The sister who sat up all night with me, as my mother died, sitting vigil with me, each of us helping the other through the deadening pain. My sister.

So Friday I fly home to finally bury my sister's ashes a year and a half after she died--my brother-in-law seemed to not be emotionally able to deal with a burial, and only my diagnosis of cancer pushed him towards letting us bury her at all.  Now I sit with the pain freshened up in my soul, reminding me that neither my sister nor my mother are here to help, to call me, to comfort me, to hold my hand through this horrible cancer journey.  Yes, I'm selfish. I want them here to comfort me.  I feel lonely in the world without them. I want them back. Just like my brother-in-law, I don't want to bury my sister either, if it meant I could have my sister Melissa here with me again.

But Melissa is dead, and she left burial instructions.  So no matter how painful the task, I will help to ensure her burial instructions are honored.  Melissa will be buried on a rolling hill, overlooking the Wisconsin farmland she lived on for many years.  It is what she wanted.

Years ago, on my way home, I'd take a short cut through a small cemetery.  Towards the edge of that cemetery was a small grave, a lamb sculpted into the top of the headstone. The toddler buried there died in 1935. And over fifty years later, every week someone was leaving fresh flowers near the stone. I used to wonder about that grave. Was the mother of that barely two-year old child still leaving those flowers? Or was it maybe the sister of that child, the mother leaving an indelible mark of sisterly duty, compelling the living child to continue to leave flowers, even after the mother had died.  Either way, those flowers represented over fifty years of dwelling on death and loss, and that struck me as very sad.

In a similar way, my life has become about death and loss, whether the deaths are those of my sister and mother along with two close friends, or my own possible death due to breast cancer. Whatever the death or loss, I'm tired of it.  As Winona Ryder's character desperately whispered to Gary Oldman's Dracula in the 1992 movie Dracula, "Take me away from all this death."  Her breathy whisper always struck me as Winona Ryder's morbid call for Calgon to take her away.

Like that death-whelmed character in Dracula, I want Calgon to take me away too.  I don't want to lay flowers on anyone else's grave. I don't want to help anyone else die.  I don't want to think about death and dying anymore. Screw Elisabeth Kubler-Ross and her death and dying.  I want to live.

Anyone else want join me in being alive? Let's not talk about funerals anymore.  How about we skip the imaginings of end of days and burial plots? Let's focus on babies and puppies and sprouting fields of wheat. Let's wallow in new car smell, freshly planted mint, scrumptious meals, movies that won't be out for years to come. That's the kind of life I want to live. A life focused on life rather than death.  Because frankly, I'm just plain sick and tired of death. So let's all get back to the business of living and be done with it. Damnit.  I'm off to Kmart to buy some new car smell in a can. I'll drive. Wanna join me? Hop on in.

Monday, August 6, 2012

What'd You Call Me?

There are lots of ways to refer to what I have.  Stage IV cancer. Metastatic breast cancer. Advanced breast cancer.  Frankly, I don't like any of these labels.  I'd rather say, "I'm just a touch under the weather. Give me a sec, will you?"

But still, these are the official names of "oh, crap, it's bad" cancer.  Does it matter how I refer to my disease?  A study I read recently says, yes.  In the study, the group referring to themselves as having metastatic breast cancer had slightly higher survival rates than the group referring to themselves as having Stage IV breast cancer.  I know for me that the term Stage IV has always meant imminent and fast-approaching death, so I tend not to use that label.  If asked, I'll say I have metastatic breast cancer. It's the label I prefer.

Lately though I treat my disease as if it is an unpronounceable name; like the Judaic Yahweh, so beyond any human's understanding, that even a label couldn't begin to capture the essence of God.  But instead of this disease being so grand in my mind, it is so frightening, the words sticking in my throat in an attempt to not talk about it at all.  If I don't say the label, but merely motion toward it, I don't give it the chance to terrify me yet again.

It took me a long time to realize that several people assume I am going to die soon.  A look in someone's eyes, a sudden changed experience with that individual and it dawned on me, "Oh, they think I'm going to die."  Luckily I hadn't been thinking that way at all.  I still think of myself turning 70 or even 80. I continue to look down the road to what life will be like when I am old.  It just never really struck me that I was shooting down a path of death. I do think of dying here and there. But that stuck in the craw thought of, "you're going to die real soon" just wasn't happening for me, thank God.

Recently I watched an interview with Michael J. Fox. He was describing what it was like to live with Parkinson's Disease, comparing it to freezing in the middle of the road as a bus hurtles toward you. That is a perfect image for this disease. Frozen with a bus coming down on me.

Here's the challenge. How do I live with that bus on the horizon? Lately, I've been staring at that bus, looking for some sign, some clue. Will the bus hit me hard now? Or will it clip me and leave me disabled and dragging through the rest of my life?

I've talked to people who, although they've survived for years with metastatic cancer, talk only about what they can't do or what they can't have. I've gotten a taste of how hard this journey is going to be. I'm scared of what comes next. But, frankly, the bus may never hit me. I know the odds are low, but I might die many, many years from now of a standard heart attack. So I may live for years with this disease, and I don't want those years to be me focusing on what I can't do or what I can't have.

Yeah, my feet and fingers continue to be neuropathy numb. Yeah, I get up in the morning, or push myself off the couch, and I'm waddling sore. I admit I'm chemo fatigued.  But you know what? I keep pushing myself off that couch. When I see something on the floor that needs to be picked up, I make myself bend over to pick it up because I don't want to live in a littered house, and bending over will give my legs and hips a stretch.  At night, when I lift Pearl, the miniature schnauzer, onto the bed, I pause and lift her above my head several times to strengthen my arms. It might sound stupid, but it's my way of taking it slow, and I figure if I do little things along the way, I'll build up to bigger things down the road.

I remember when I was in Barbados years ago, there were two types of public buses.  One was a government-owned bus, plain blue, simple, gets you around.  The other was a privately-owned bus, tricked out with decorations, raucous, packed with riders, leaving only standing room in the aisles.  The bus I chose to ride was the 50 Cent bus, decorated with oversize images of the rapper, his music blaring loudly from speakers above the riders' heads.  Ice cream in hand, I rode that bus standing, hanging on to the overhead railings, leaning into the curves as the bus careened around the island's twisting roads. That was an alarmingly fun ride.

So maybe that's the bus coming toward me. Loud, glittery, careening around the curves.  At least then when I stare at the bus, I can listen to the music, see the sparkling decorations, and enjoy the raucous crowd taking the ride. It's better than thinking of death.

Also published on CureToday