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Chapter One

dember camera 067Chapter One

 

For me, growing up, among the deeply frightening list of things that could possibly ever really befall me, in my semi-precious state of seemingly infinite invulnerability, with dire and certain-death circumstances, getting Cancer was very, very, very close to the top of the list. I felt so deeply sorry for people with cancer and also profoundly fascinated with how they actually did it. That is, live that way. Knowing- in the way only people who have Cancer must know- that they are going to die one day. For sure. For me, growing up, this just seemed to me like the absolute worst thing that could ever happen to a person. People with cancer died. Quickly and sadly.

In the 7th grade Beep Thurick’s mom died. I never knew her but I knew which house in Mountain Park they lived in, Desiree lived a few houses away. She had the same crush on Beep that Lucia, Molly, Eve, Heather and I had. Something about that guy. He was Junior High Hot. The day after his mom died, Beep came to school. Just like any other day. Nobody knew what to say. It was so fucking sad. I think I cried for him, and her and his beautiful sister Lynae who had long, straight blond hair and dated and the best looking defensive end and was still the kind of girl everyone liked.

Cancer did not have any other name. It didn’t have a breast or a kidney or a lymph gland of any sort. Cancer was just that. A sad end to life. A certain and very sad end.

This was sometime between 1969 the year of my birth and 2003 the year I put down the telephone having ended the conversation I just had with the very nice Surgeon telling me about some sort of Leukemia or something.

Nicole’s sister Jackie died of Leukemia my freshman year of high school. She was two years ahead of us, 16 years old. The three of us drove to California in their families gracefully-aging Volvo. We went to Oakland. We rode the Bart. Jackie had gigantic black eyes and a huge, neon smile and she could laugh her ass off. Nicole and I were 14 that summer. I traveled to Seattle to visit when Nicole donated her bone marrow in a very experimental procedure where the marrow was transferred from the donor into the patient. She had little dotted scars shattered across her lower back where they took tissue. I never knew how much it must have hurt her. All over.

I think it was Ron who told me on the steps at school. Or maybe someone called the night before. Jackie really died. It was awful. It was tragic. It was cancer.

I do remember crying on my bed after her funeral. I do remember a distinct moment when I felt as though she were very close there with me in my room and it was not a sad feeling. At least not for her.

Amid the constant low current of deaths told in passing…”his mother died”…”oh, so sorry to hear that”…”well, yeah, sad…”….”what, happened?”…”oh, some sort of cancer”, loved ones fell.

I was honored, surprised and even shocked to be asked to sing at Uncle Charles’s funeral. Everyone in the family assured me that if I couldn’t make it through, that would be totally understandable. And I didn’t make it through. Got all choked up. But that was the way Uncle Charles always sang too. With big red tears in his eyes. The stories of him singing Oh, Danny Boy are legendary and told with wide eyes. To this day, and certainly not back then- I’m not sure what he died of. Just that it was some sort of cancer, speedy and greedy and strong that took him down. Grandma said, after it was all over, that he hadn’t wanted anyone to see him at the end….”he looked so bad” she said.

Now Uncle Charles was not an Olympic Athlete, let’s be clear about that. He wasn’t going out of his way to take care of his temple- Lord knows. But when all you know about a certain word is that it causes all life as we know it to end for people you know, people just like you, living, breathing, smiling, laughing people you enjoy spending time with- a sort of conditioning starts to take place.

A potentially unconscious pattern of thought develops and the bottom line, for me- growing up, was that if you got cancer- your ass was grass.

I have found however- that there is an up side to it all.

For instance, your pants really do fit better once that “last –however many- pounds” is off. Even if it came off during some mild chemotherapy appointments.

 

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Do These Pants Make My Butt Look Big?

Thorne Takes July 2010 094On my last visit to the Oncology clinic up on the hill, the sky was full of blue and the curving stone path leading there was lined with Azalea bushes sweeping up and around to the front entrance of the Physician’s Pavilion. The front doors open automatically into the lobby. Taking a left down the wide hallway pressing through another set of double doors I am, once again, in the light, southwest facing waiting room with its wall full of windows, the Bone Marrow Transplant Clinic at the Center for Hematological Malignancies at prestigious OHSU. Patients and their respective care givers sit together in assorted groups, some have face masks on, some have snug caps over their hairless heads. Being bald is surprisingly cold.

The mood in the room is cordial with a mild and remote heaviness. Some people are here for their first visit and it shows, heads full of hair and a face full of questions. This isn’t somewhere you would ever hope to be. Once you’ve checked in, you wait and when your time has come, the nurse comes to get you. Then off through the next set of double doors leading down the wide hallway lined with private exam rooms and the Doctor’s offices, the social workers office and ending, at the infusion room.

Three rows of cream reclining chairs stretch out just past the nurse’s station. IV bags full of various things including medication, blood, platelets, water and chemotherapy, hang on silver holders with wheels attached to the patient in case there is a need to visit the laboratory. I saw familiar faces here, those kind eyes and sincere smiles on the faces of such kind, worthy and remarkable men and women who show up, everyday, to foster better health. I don’t know how they do it. While many of us who are afflicted with a crummy case of cancer do survive and go on to live out our “new normal” lives away from the tugs and pokes of IVs, the compassionate and very capable nurses and doctors and social workers, live with it. I met who nurse who told me twenty-five years ago, when she started her work in Oncology, the only treatment they had for nausea was a plastic bucket. She had seen it all. Whenever I come here I can’t help but remember that this place has seen a piece of me. The memories of the many days spent here as a patient sweep down the hall like songs from another time in life. As I’m sitting in the exam room waiting for my Dr. to come tell me I am on the path to health and well being, I can’t help but remember…

I woke up one morning in the weeks following my stem cell transplant, it must have been a Sunday and my nose started to bleed, slowly at first but steady. I remember being really irritated holding one hand over my eyes and the other on my nose. It just would not stop. My mom, advocate of many folk medicine cures had taught me things like; a generous sprinkle of pepper will stop a bleeding cut and does not sting; a piece of grocery bag or newspaper folded in half and small enough to fit under your lip helps stop an insistent nose bleed. I had had several nose bleeds in the weeks prior to this day and I remember being so irritated at that moment. Bloody noses are messy. I just really wanted to go back to bed. I tried the newspaper under the upper lip thing to no avail.
And then, my mom who has a solid and genuine intuition arrives, unannounced. She knocks on the front door and lets herself in. She just showed up (!) while I was feeling exasperated and gross. This was not a grateful moment for me, I was not thinking about how positively cancer had engaged a change in perspective, I was not grateful for having found the life saving help of an unrelated donor in a foreign land. I was unable to look at the bright side in that place. I can only hope it didn’t show. I am rocked with the sense that I might never feel better and the inconvenience of a persistently bloody nose becomes overwhelming mentally, physically and emotionally. I feel out of control.

My mom does her damnedest to get it to stop, it does not. She wants to and is required to call the nurse because this is one of the three big red flags; bleeding, fever, vomiting, these all mandate a call. Rema, the nurse, wants to call an ambulance. Mom knows I don’t even want to go to the hospital and so she carefully navigates a plan to bring me straight away, safely. She doesn’t tell me she’s made a deal until much later in the day. For now, we get rolls of toilet paper stuck to the front of my face and head up the hill.

As I remember, it was a Sunday. Nurse Jana led us to the back of the clinic into a private room with a large reclining chair for me, a sink and space enough for three helpers. All of the attention is focused on the nose. The lights are bright. I feel sick and really just sick of feeling sick. The blood that has been running down my throat is heaved into a bin held in front of my tired, cranky café. I am not a morning person, even in the best of times. I’m smiling now at the memory of this because, the plot thickens. While waiting for the platelets some-one friendly healthy person in the world has donated I find it’s time to use the bathroom. You should know that the normal range for platelet counts, the cells that help your body clot blood (extremely useful during a nose bleed) is somewhere between 170-400 units. Mine is at 3. The sharp eyed nurses help me up and walk me across the big room and I enter the bathroom just opposite the nurse’s station. I enter and for some unknown reason, I lock the door behind me. Mom is standing just outside the door. This is where it gets good. They told this story around the clinic for several weeks after it happened.

I shuffle across the bathroom floor, one hand on my nose and sit on the toilet. Next thing I know, I’m waking up. Lost consciousness wake to a pool of blood between my feet, this is not good I think to myself. I have never passed out before except maybe after a drinking spree but those few times I don’t remember. I was stone cold sober and passed out on the toilet. What! I remember getting to the door, opening it and falling face first, into my mother’s open arms. I come back to consciousness again staring up at my blood which has splattered all over the nurses pants.

It all worked out. And there I am in the clinic this season, years after this fateful day looking like a normal person, back to worrying about the things that really, probably, don’t matter much. Do these pants make my butt look fat? More than at the time, I appreciate what I’ve been given. I accept it. I have moments of sincere gratitude and aspire for more of those. The clinic reminds me that I’ve had my moments and on the days now, every few months, when I go to visit that particular place, it resonates in me.

Written Sept 2009

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Millions of Bands

There is no official count. This is not the kind of thing that the Census Bureau thinks to ask but it seems to be no great exaggeration to say that there are, in this country alone, millions of bands.

Millions of bands with posters, web sites, email lists, demo cds and rubber tree-type-hopes for a pay check at the end of a roaring set that leaves the audience breathless and panting and inspired.

Millions of bands with songs and the carefully cultivated look they put together for their press packs intended to give the impression that they are casually hanging around rail road tracks and grassy knolls.

And when you start to think of it in terms of just sheer numbers, while it is sincerely exciting to know the world if full up with music makers, if you’re one of them, and you believe what they’re teaching in Economics courses everywhere – you know how steeply, deeply the supply of original music must exceed demand even if the whole gave up Television for the rest of the decade and dedicated themselves to the ingestion of copious amounts of music – there would still be more than enough to go around. Daunting, isn’t it.

Still. Millions of bands across the country and we are just one. Doesn’t this make us One in a Millions? Why, indeed it does. And, look-ee here- the latte is still half full.

Stiff competition aside, here’s from the world of Amelia band. One of a million.

amelia photo shoot feb 06 015

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Put Your Dreams Inside My Window

Teisha Paris 226If I could just freeze this moment in time
then I would be fine, I would be fine, fine fine
Put your dreams inside my window
Nestle all those sheep to bed
Even when you cannot see it, there is more of you to spend
More of you to spend
More of you to spend

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Wishes

Birthday Party 8/8/10

 

The week of August 1st through the 8th was full of memorable moments on hot summer days. There were fevers and examinations and songs sung to babies and Junior mints and red roses and introduction to kind ER doctors and a check up where piles of skin and wax were vacuumed out of ears as I watched in wonder on the TV in the small, comfortable office of the ear man who took out the blocks that had been clouding out sound.

There was an afternoon spent with the aforementioned parents for an hour or two. This was the first time I had seen my folks, who met forty some years ago in Tacoma, in the same place in my adult life and it, was, cool.

My skin slowly healed on itself after several days hanging out at the ranch at Mom’s and she gave me “A Tree Grows in Brooklyn.” I must have eaten about eighteen cupcakes in seven days. A beautiful strawberry shortcake held a hefty sway of birthday candles while, in the wake of Elizabeth’s somewhat sudden but anticipated absence from this lifetime, we toasted to not regretting another birthday come upon us. Visiting 020

Gifts filled the backyard and included balloons and earrings and fragrant bath soaps and compact disks and books. The air was filled with laughter and pleasant conversation and questions and answers and fun. Couples married for life came, and coupes unmarried and re-coupled came. Friends from high school and college co-mingled and it was just a wonderful, completely surprising day. Sandy brought Oreo cookies and a card. Nicole brought flowers. Lilly send an exceptional birthday cake candle. It may have been one of the best birthdays I’ve ever had. It made me cry. And laugh. And smile. And shrug my shoulders in quiet awareness of what it feels like to know you are lucky. The sunlight warmly washed the backyard in a private but restless wonder and it shone in the shiny locks of woman and men alike.

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Not. Remember that?

T guitar by S Diteman July 2011My first bone marrow biopsy took place in last room down the hall at the local hospitals’ somber cancer clinic. I had been officially diagnosed by telephone the previous Friday afternoon. Monday morning was the soonest we could meet with the doctor. My blood ran cold all weekend waiting for the empty lobby room of Dr. Jan.

We had our awful meeting, I felt so sorry for her. She seemed like a very nice woman in her late 30’s, who felt really badly about having to explain this new diagnosis to me. I wasn’t helping matters. I think I may have bordered on argumentative when she intimated how long people with my disease usually live which- even if it had been 50 years (which it very clearly was not)- it STILL wouldn’t have been long enough, because nobody wants to be told a definite DATE, a time of year, which year, in which decade. At least, I don’t. I like the whole thing about “you never know.”

It is not as if it’s not functioning. It is. I wake up and brush my teeth and wash myself and dress myself and feed myself and I when I drive the car I stay between the lines. So, as far as functioning in the universally basic drink and pee sort of way I’m not worried a bit.

Still, my head is all fucked up. And since we’re on a subject that is by its own crippling definition going to sound confused, irrational, crass, vulgar, sentimental and just generally uh, fucked up, I would like to ask that you do me the favor of relieving my already delicate voice of reason and apply (like a glimmering coat of lip gloss) your best judgment to these broken words from my pouting mouth and if you feel, at this moment, that you cannot continue to listen to what I am trying so desperately to say here – is please, let’s not continue this relationship unless you agree to like me when we’re done.

That is unreasonable I know. But see, I just got through saying my head was fucked up. Did you think I was kidding? I was. Not. Remember that? If you remember the days of Not, that tells me something. How old are you? Don’t answer that. It’s none of my business is it? Although, it would sure help us establish a few things. Like whether or not you typed your college essays on a typewriter or not. Do you remember the day that Kennedy was shot? I don’t. So that says something. It says that while you can tell me about the day that Kennedy was shot and (assuming I am not too distracted by the constant stream of chatter in my own head), I can hear your story and comprehend what went down. But you’ll know (and won’t I too?), that I can’t relate. Now if you remember the day Elvis died, now we’re talking. That is right up my alley.

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