Roy Rogers is riding tonight. Cancer and me.

( – promoted by buhdydharma )

It’s maybe four and a half, five miles from the Lowe’s hardware store to the front yard of my house and most of the way I drive, the route is a very straight stretch of two lane road that looks nothing like suburbia and very little like the rest of the east side neighborhoods that splotch the landscape of land where truck farms and diary farms abounded in the late 1800’s and early 1900’s up through the 1960’s.

The two-laner dips and rises a bit occasionally as it passes by the still expensive homes that seem to want to announce to every passing driver that wealthy people live there, or lived there, with their horses and white cross-bar wooden fences or the occasionally recycled plastic white board-like fencing with the spire post caps.

Personal disclaimer: Over the years here, I’ve made liberal use of the device of interspersing lyrics with my writing. Tonight I’m a little fanciful, but I’ll mention up front that I’m gonna do it again in this diary. Some people hate it. Well, you don’t have to read me. But I ask that you bear with me anyway. Indulge me.

And, whatever you do, grab all the joy you can.

(crossposted at Dailykos)

Those plastic fences jar the sensibility somehow when they grace a front property of a larger McMansion with adjacent stables and rich velvet grass pasture. The other thing that jars the senses is the sheer number of “For Sale” signs along the way. This area I drive through is called Bridle Trails, and as the name suggests, it’s a horse world in the heart of the suburbs. Bridle Trails at its western edge parallels I-405 south to north about five to ten miles inland of the eastside of Lake Washington from Bellevue to Kirkland, Washington.

Sometimes you dream, sometimes it seems

There’s nothing there at all

You just seem older than yesterday

And you’re waiting for tomorrow to call

I could go the freeway, maybe quicker, but why? I’m always taken, and taken away, by the rather false sense of quiet along this road though the carbon monoxide and noise from the freeway is close enough to smell and hear.

Along 116th Avenue NE, the long straight stretch has trees, tall trees, birch and willow and elder trees, that line the road and shield most of the drives and houses along the way. This afternoon, I drove home from Lowes with my $4 discount, mismixed budget cream Satin gallon of paint that I’ll get the kids to brush on my bathroom walls next week when I go back into the hospital for the second and next round of five-plus day chemo.

I thought of Salinger’s Seymour Glass in “A Perfect Day for Bananafish”, and his trees along the road. Again.  

Not too much traffic this morning, and I flit to the inside lane, steering and gazing left to the water. A chancy risk to take, but the view is always enthralling. I think of Seymour Glass, of “A Perfect Day for Bananafish”, and his habit of watching the trees alongside the road as he drives. I live dangerously.

Oh, can it be just two and half years ago that I was near to burying my sister? I guess it can be.

Today on the drive home, I found myself listening to an old Modest Mouse CD and “3rd Planet” was playing and I opened the windows, all four windows on the old Prius, and it was cold and sunny and damp from last night’s rain, and I felt the wind blow through my hair.  I saw bits of my hair flying out the window.

The universe is shaped exactly like the earth if you go

Straight long enough you’ll end up where you were.

Your heart felt good it was drippin pitch and made of wood.

And your hands and knees felt cold and wet on the grass to me.

(No good video – live is too jumpy for me, but the sound quality is fine on this static vid.)

And I thought to myself, how odd that a couple of months ago, when it was summer, I drove with the windows down and my hair was blowing, but I had two feet of it then and it was such a hassle because it was blowing across my face and getting in the way and I had no hair tie in the car and it was hot, hot, hot. Today, the bits of hair flying were not a hassle; the sensation was rather oddly liberating.

In this weaving-towards-free-association scribbling, I’ll draw you back to a little background and I promise to be as brief as can be, because the details of what I have are not terribly important. Right now.

To start, I wrote a diary for the Daily Kos Health Care Series on Thursday: Autoimmune Diseases, Collaborative Medicine back in late May detailing some of the procedures and forays into attempts at diagnosis of why I was feeling frankly shitty for the past year or so.

We all thought it was autoimmune something or other, a sidecar to the hypothyroidism I’d had for years. Doctors, pathologists, naturopaths, some authors on autoimmune who contacted me and saw the very familiar signs of commonality of autoimmune disease I exhibited – and myself. I think I was grasping at straws; I knew deep inside that something was seriously wrong. I was comforted by things docs say when they don’t know what you’ve got, when all your blood tests appear perfectly normal, when nothing symptomatic pops in a clear and concise way declarative of a specific disease that can be treated, attacked, cured, palliative medicines applied to wipe out the fear and the pain.

I was comforted as well by the thought that I was being proactive. I wasn’t just taking any doc’s word for what they thought I had. I was going back when something cropped up anew and I was being forcefully articulate and documenting my symptoms and the way I was feeling, when nothing they gave me eradicated the symptoms. When, at the end of  May, I was told by a pulmonologist that I didn’t merit a bronchoscopy (even though my mother had survived lung cancer in the 80’s) because the blood I was lightly coughing up had to be from my sinuses, not my lungs, I went home and started on Afrin from my doc’s office, hoping to put off another doc visit until review time was over at my job – so I let the symptoms sit for a month until July.

The coughing up blood and the fatigue got worse in July. By mid-July, I called my family doc and asked him to schedule a CAT scan for my sinuses and neck to see what might be going on.

The CAT scan was done on July 29. The radiologist could find nothing out of order in the scans to merit the blood specks (well, by this time, a teaspoon of blood in the morning and a couple of times throughout the day, but no cough and little shortness of breath). He called my family doc while I was in the CAT scan room and requested to do another lung CAT scan, as well as a mammography, as the radiologist suspected something else. The last CAT scan I had was done in March and it was an all clear at that time.

A lung CAT was done, the mammography was done. He came and said to me gently, “there are what we call “fluffly infiltrates” through both your left and right lungs”. And proceeded to tell me that it could be (80% chance) vasculitis – a somewhat rare but not necessarily uncommon “sidecar” autoimmune disease that occasionally dovetails in with Hashimoto’s disease (extreme hypothyroidism) or with Rheumatoid Arthritis. The other 20% chance was that it was metastisized cancer from another primary location.

Back to the pulmonologist on August 4. Bronchoscopy this time (wow!). Pathology took three weeks (August 24) and initially they came back with a diagnosis of fungus infiltrates – a kind of black mold not uncommon in damp areas and around construction sites, and I live next to a construction site where they are building a new high school. Problem solved! Antibiotics and other prophylactic treatments. Whew!

The next day, I got another call (August 25), same pulmonologist, newer pathology from a lab back east. Unidentified biopsied cells indicated cancer, neoplasms in the lungs that had metastisized from a tumor in the heart. Angiosarcoma, or sarcoma of the heart.

I’ll stop here for now. Not because it bothers me, but I’ve told this story a few times, and now it’s boring as hell for me to relate. So I need a break. Let’s talk about Roy Rogers a bit.

Sometimes when I drive the Bridle Trails route from the Lowes, I think of Roy.

Sometimes you dream, sometimes it seems

There’s nothing there at all

You just seem older than yesterday

And you’re waiting for tomorrow to call

When I was a kid, those kid cocktails were all the rage – Shirley Temples and Roy Rogers. The difference between the drinks, if I recall correctly was the difference between Coke and 7-Up. Shirleys had 7-Up and Roys had Coke. Grenadine was added for the red.  My middle daughter, still at 21 years of age, loves Shirley Temples and it tickles me pink to see her order a Shirley Temple in a restaurant when she could as easily order the hard stuff.

In 1969, driving back from Seattle to Bandon in Southwestern Oregon after my dad was buried in Seattle, my mother and I stopped at a restaurant-come-nightclub in the middle of Lincoln City on Highway 101 on the Oregon Coast. The building was still there last time I passed south through Lincoln City, though the owner, and the “club” is long, long gone. The owner was an old Alaska fishing buddy of my dad’s and mom stopped there for dinner on our way home from the funeral to let the owner know my dad had died. We ate dinner, a late night dinner, in the bar, even though I was only eleven years old. I had the temerity to request a Roy Rogers from the owner (whose name I’ve long forgotten) and he thought it was funny that I didn’t want a Shirley Temple, because I was a girl and the girl’s drink was  the Shirley.

And that’s how it’s always been with me, I think. I always wanted the guy’s stuff and not the girl’s stuff. The power tools for Christmas and not the frilly robe. The pickup truck (which I’ve never gotten) and not the sports car (which I’ve also never gotten except for the one brief moment I had a Mini Cooper which then blew the transmission and put me deep into debt). Served me right.

Angiosarcoma of the heart, oddly enough, affects twice as many men as women.

Back to Roy. I loved Roy. Not so much Dale, though she must have been a lovely person for Roy to have been married to her all those years. But even Lyle Lovett wrote about Roy…

If I were Roy Rogers

I’d sure enough be single

I couldn’t bring myself to marrying old Dale

It’d just be me and trigger

We’d go riding through them movies

Then we’d buy a boat and on the sea we’d sail

My youngest daughter wants a vintage Mustang. My daughters, all, especially the two youngest (the oldest is heavily pregnant and did a lot of cleaning) put new carpeting in my house during the time I was in recovery from the first chemo session last week. They moved the furniture and primed the subflooring, and cleaned the walls with bleach and disinfectant to clear the air in the house of allergens and dust and dog hair. I owe all my daughters something. I’ve been granted so much in triplicate and in advance all these years, you see, by the love they’ve given me.

You draw to the curtain and one thing’s for certain

You’re cozy in your little room

The carpet’s all paid for, God bless the TV

Let’s go shoot a hole in the moon

The middle daughter wants a vintage Mercury Comet.

The sensible part of me, the (admittedly small) part unaffected by emotion and unswayed by the unwise longings of youth, says “not on your life”. The part of me that loves Roy Rogers, the part of me that really wanted that old 1959 Mercedes Ponton back in 1983 when I was 25 and my older brother said “Meh”, well; that part of me says “Roy Rogers”!

And Roy Rogers is riding tonight

Returning to our silver screens

Comic book characters never grow old

Evergreen heroes whose stories were told

Oh the great sequin cowboy who sings of the plains

Of roundups and rustlers and home on the range

Turn on the T.V., shut out the lights

Roy Rogers is riding tonight

And that part of me also says life is short, dammit. I, at least, may know that the span of life ahead may be shorter, may be more bittersweet, more painful, more fleeting, more damnably dimmer as the days grow shorter, the nights longer, the darkness less a nighttime thing than an entity behind my shoulder telling me that eternity is what they call the part of the cosmos where hoofbeats echo when they fade to the horizon.  I know more than most of you know. Arrogant, aren’t I?

Lay back in my armchair, close eyes and think clear

I can hear hoofbeats ahead

Roy and Trigger have just hit the hilltop

While the wife and the kids are in bed

I’m good right now. I’m feeling fine. The hair is going, but what the hell. My energy is actually better than it was two months ago, my spirits better, and my humor…well, you judge. (See below and look for “banana slug”.)

I hope to continue to update if you’re interested, and I’ll post a “Hair Stage” diary soon – just for kicks. I find this process interesting. It may sound like I’m in a denial – but, frankly, I’m me. This is how I deal. I like this about myself. It may get rougher, I may get angrier, sadder, depressed, ah hell, and sicker, too, and it may be all for naught. Fuck, I may and probably will die. So do we all. But this is life to me now, now, now.

We are, none of us, guaranteed a single fucking thing, though we may think we are, on a day-to-day basis, and I’ll gladly grab the joy I see around me, the joy I have, the fun that I can generate, the tears, too. I’ll grab it all and stuff it into my heart and damn the torpedos.

Thank you all for all of the amazing comments and thoughts and words you’ve expressed in the past two beautifully wonderful diaries written on Dailykos by Dem in the Heart of Texas on:

September 21: The Grieving Room: exmearden is in the fight of her life

and

September 26: exmearden goodwill action diary

and, additionally, the most spectacular quilt ever created – done by Sara R  (Rain on Street Prophets) of Daily Kos with incredible, healing comments submitted by so many wonderful of you here. I can’t wait to see it and to hang it on the wall of my hospital room, if I can, on Thursday, October 8th when I go in for my next chemo trip to the University of Wonderland.

I will indeed be the envy of any patient anywhere and I’m gonna rub it in (grin). The thoughts and blessing expressed are now in my heart battering that 2.5 inch by 1.5 inch by .75 inch tumor. I call the tumor in my heart’s right atrium a banana slug (not so affectionately in perfect Pacific Northwest endemic vernacular). The wishes of this community are as strong or stronger than any chemotherapy out there, I’m convinced, and those wishes will salt that baby right away. Mental, mental, mental strength and positive thought – how’m I doin’?

Thank you, and thank you all for reading tonight. I also apologize for not getting back and reccing earlier comments in the earlier diaries by Dem sooner. But, no guarantees, eh? More soon unless the sky falls.

-exme

(Lyrics used in this diary are as follows: “Roy Rogers” – Bernie Taupin (music, Elton John) ; “3rd Planet” – Modest Mouse; “If I had a Boat” – Lyle Lovett.)

32 comments

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  1. As Pat Brady used to say.

    Thanks for exquisite essay.  Be well.

  2. On The Bus, thanks for the banner nod (and tip o’ the ten gallon hat to OPOL for the original creation (I think))!

    Took me awhile, but I got over here. Some would call it “moseying”, some would call it “cat-napping”. I forgot how exhausting these diaries can be.

    😉

    -exme

    • Edger on October 4, 2009 at 4:54 am

    Best…

  3. feeling a bit tired. The old horse shoes are dragging tonight.

    I’ll check in tomorrow morn, unless I can’t sleep later tonight. Sorry all. Please do have a good evening (and catch some old movie classics on AMC for me).

    😉

  4. I am so very impressed with your diary and your incredible resolve.  Hope you know how special you are.

    • justCal on October 4, 2009 at 6:58 am

    It’s funny that you should use that phrase.

    When i found out that I have cancer a couple of weeks ago that was my first reaction.

    “This seems oddly liberating”.

    In about a week I go in for The Big Talk with my doctor.I’m not sure how this will play out as there are some things my vanity just won’t allow.We’ll see.

    As a lover of lyrics and such you might find this amusing,lately a line from the movie Butch Cassidy and the Sundance Kid Keeps running through my mind.

    “Swim? Hell,the fall’ll probably kill ya!”

    Best Wishes.

  5. It gives me another chance to enjoy your writing, marvel at your courage, and send hugs and prayers your way.

    Cat naps are good for you.:)

    • melvin on October 4, 2009 at 10:51 am

    Ivar’s looking for you!

    • pfiore8 on October 4, 2009 at 10:53 am

    i couldn’t help but come back here. i’ve checked in every few days to see if you’d written anything. to see how you are. somehow, i missed this a daily kos.

    i wanted to tell you that i sponsored Sam Adams. i so miss having a dog. i miss my bear . . .  if i was in portland, i would have gone to the shelter and taken Sam Adams home! I checked on him the next and was very happy to find he’d been adopted.

    i wrote this in Dem’s diary . . .

    Dead Reckoning

    I stepped out on the porch a few weeks ago and saw a Mexican wedding cookie moon, sliced gently in half and laid on the silent cool black table of the night sky. Gauzy high clouds formed a foggy backdrop scrim against an inky proscenium.

    The straight-edge half of the moon was dialed down to east-nor’east, as a quarter hour of midnight drained away on the clock of the galaxy.

    exmearden

    i mean wow . . . sliced gently in half and laid on the silent cool black table of the night sky.

    exme, you always knock me out. i think a lot of my more recent poetry can trace roots to the way in which you’ve unlocked something in me. to trust the images and the rush in my head. not to look for words, but let them fall as the aftermath of the experience.

    thank you for that.

    but wow. i just never figured you would knock me out with such news. overcome by it, really.

    there must be many of us upon whom you’ve exerted that kind of influence. to stop looking for effect, and just be honest in the writing. giving respect to the very thing that’s moved us to pick up pen (or open laptop), instead of packaging it as those homeowners with their velvet green grass surrounded by plastic fencing . . .

    i’ll see you in the next essay . . .

  6. I posted a comment, too, in one of those diaries a few days ago about the quilt, the secret one I think, haha. And I said that I didnt “know” you but wished you well.

    Later I went back and clicked your username to go back and see your writings and I went…oh. Yes. Oh, my. Yes I do “know” you after all … as I read I recalled vividly how touched I was at first read. Aaron. Some of the others. So I suck with remembering names, but I recognize your true heart.

    Blessings.

  7. and his tribe of adopted children went to my Sunday School in the San Fernando Vally when I was a kid. I was really jealous as they lived on a ranch with Roy and in my mind rode the range in Nellie Bell while being serenaded by the cowboys.

    I send my love and all the healing I can to you. Your essay about Bandon, moved me beyond words as it was in that town that I was reborn into the woman I am. My time there is/was a beautiful exotic dream, it was a magic place.  I think we inhabited this place in different years but I like to think that the motel I worked at as a maid, one summer in the seventies, was where you lived. Perhaps we passed walking on the bluff.

    Your writing is beautiful it’s an inspiration to read. Were lucky to share this place and time with your presence and words. Thank you exmearden. Your spirit is so good and strong, I wish you well.        

  8. Thank you for sharing your “fanciful writings”.  

  9. …folded origami cranes for you, Roy and Trigger.

  10. I’ve been wanting for words “publicly” expressed.  

    Your words, your expressions, always, always, have been so beautifully expressed.  I imagine you write in the wee hours — so as to have enough peace to do so.  (I assume, but, of course, do not know.)

    We do/have travelled similar roads, as, perhaps, many of us here.  I have never thought of it “an accident” that so many of us here share so many seemingly “common” experiences, but we do.

    Perhaps, that is the “home” Pfiore8 speaks about!

  11. Thank you for the moving diary.  Best wishes to you and yours.

    • RiaD on October 7, 2009 at 2:03 am

    every word of yours i’ve read has touched me deeply.

    i love the way you suck me in & take me along on your journeys, a lil cockleburr hanging on to your shirtsleeve.

    this news of yours has hit me like a sucker punch.

    i want to find a majik wand to wave about sprinkling stardust fairydust & healing….changing outcomes. changing reality.

    your….aura(?) amazes me. somehow the essence of YOU glows through the toobz & touches me in a way no other writing has. i long to be as beautiful a person as you are.

    ♥~

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