Friday, December 27, 2013

“Well, things are bad, but at least nothing else can go wrong.”

If I asked you the best way to find an optimist- not an Optimist, you'll note, an optimist – how would you go about it?
Well, consider the person for whom one thing after another is going wrong. Some are big, some are not, but they are cumulative. The person is pretty much brought to their knees, but in a last ditch effort to remain positive, they say to no one I particular, “Well, things are bad, but at least nothing else can go wrong.”

Hello optimist! I don't know about you, but in my experience, I haven't been aware of some cosmic scale that says, “OK. Enough already. Let's stop at five bad things. Two of them were really wretched after all.” How'd that work out for Job? Poop happens and sometimes it happens to you and it stops when it stops. Right? Same with good things, actually, but we tend to be less focused on that.

Let's take Sheri and Jim as an example of our poop happens theory. We've had a couple of big things go wrong in the last five months, not the least of which, obviously, was my getting cancer. But I believe we humans are built, for the most part, to cope with big things. It's the steady drip, drip, drip of little things on top of the big things that cause people to cry, “Well, things are bad, but at least nothing else can go wrong.”

Drip, drip, drip. You don't need to be bored by the details of our situation, you know exactly what I mean. We all know the feeling of those accumulated poop drippings.  

Still, The Arnolds are managing. It's Christmas! What better time to ward off you-know-what than Christmas? Well....

Monday, Dec. 23, between 2 and 4 pm, our power goes out, presumably due to the ice storm. We're pretty used to the power going out. We don't actually live in “the sticks,” but you can see them from our back deck. We will never be Mainers, but in 15 years we have become Mainers-lite. Power? Bah! We're Mainers-Lite baby. Who needs it. We have our propane-fueled Jodl faux wood-burning stove and we cook with propane gas.

Tuesday, Dec. 24, power still out, but it's Christmas Eve, man. 'Tis the season! We aren't going to be left without power on Christmas Eve. No way. But it is getting a little nippy in here. Well, we have our candles and hurricane lamps. No running water, no flushing toilets, no phones until we can charge our cells at a friend's tomorrow. But we're Mainers-lite! Right?

Christmas Day! Power still out. We've taken to chopping ice and melting it in pans on our Jodl to wash with. We are conserving our one bottle of distilled water. We start to open our Christmas gifts, but need to stop to meet some friends in town. We do, and with our cell phones charged, we head home. And lo, what light shines from yonder stickish countryside? Sheri and I excitedly take turns identifying the areas with power as we go along... right up to our road. Nothin'. This is starting to feel a little personal. Since it starts to get dark up here before 4 pm, we now finish opening our gifts in the dark. But we have flashlights, candles and... well, we ran out of oil for the lamps. But we have flashlights and candles!

It is now really cold in here. Some of the medicines I take cause me to have hot flashes. For the first time, I'm okay with that. But, alas, not tonight. Give me a break.

We each have our little batch of candles to huddle around, the heat almost as important as the light. We are both wearing sweatshirts with the hoods pulled over our heads, and buried in blankets and comforters; Sheri on the sofa, me in my recliner. Anyone looking in the window could easily have mistaken us for a minor sect of mad monks making some statement about the real meaning of Christmas.

So, we read and huddled, read and huddled, until 8 pm, when we decided it was time to go to bed. Well, that just seemed plain wrong. It was Christmas! So we talked for about another 50 minutes before we figured Christmas was close enough to over anyway, and we called it a night.

Thursday, Dec. 26, Boxing Day in the country of my birth. Another day with no power in the land of where I live now. You'll notice, not once have I said, “Well, things are bad, but at least nothing else can go wrong”? But. C'mon. Really? Still no power. People all around us were flaunting theirs. Lights on in the daytime. Christmas lights lit. Probably online chatting with friends. Have they no pity?

Back into town. Get warm and recharge cells (phones) and iPods. Sheri stays with one of our friends to take a shower and visit. Me? I welcome the dirt and discomfort. I'm so cold I can't smell anything, so that made it easier. I come home, not hopeless, but certainly with hope on the wain. And yes! No power.

It's the last day of my current course of chemotherapy which I take at home, but it still wears me out. I realize daylight is a wasting but don't really care. I flop in my chair, cover myself with my special comforter, pull my hood up over my head, feel sorry for myself for a moment or two, then pick up my book. As soon as Sheri gets home, though, I settle down for a long winter's nap wearing all my clothes, hoodie covering my head, blankets piled high. Happy Boxing Day.

I lose track of time, daylight is gone and Sheri seems to be talking to someone in the living room. But. No. Wait!! It's the TV!! Power baby! I run around and turn on virtually every downstairs' light... because I can!! I make toast... because I can! I flush the toilet and run some hot water... BIC.

I'll spare you the part about how grateful you become for the little things, but...

I'll also let you consider the karmic implications of all of this, but I have to tell you. This was the best Christmas the two of us have had in a long time. Look, I don't blame you if you think that's another load of Jim Arnold hooey, but it's true. We were cut off from our families, which was unfortunate, but we were also removed from the madness of the season. We came to realize how much stimulation we are bombarded with everyday, not just at Christmas. I wouldn't go as far as to say it was a Christmas miracle, but I might buy it as a Saturnalia surprise.

I think this year Sheri and Jim got the Christmas they deserved. Good for them.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Sunday, December 22, 2013

So this is Christmas

I've been thinking a lot about Christmas this week. I know, just in time, right? It hasn't replaced you-know-what as my number one think, but it has been on my mind.

The thinking hasn't been about finding the perfect gifts, or the same overwrought Christmas music playing everywhere you go, or asking people how they're doing only to be met with a list of things “I have to do” before Christmas Day, or even friends bracing for visits from family while making their relatives sound, to me, like people they wouldn't let in their homes if they weren't related.

Nope. I've just been thinking about Christmas in general and whether it means anything different to me because I have cancer this year.

First, I would say this would certainly be one of my more contended Christmases. I know that might be hard for some people to believe; it has the air of spunk about it and we all know how much I hate spunk. But look around you; having cancer while surrounded by people who love and care about you is far from the worst way to spend Christmas. Right? You don't have to look very far to see plenty of worse situations to be in during this holiday. You can even be glad I'm the one with cancer and not you. See how easy it can be?

Christmas first entered the picture back in early September when I was diagnosed and our treatment plan was laid out. The second course of chemotherapy would be right around Christmas. We had no idea what that meant, but I knew I didn't want my wife, kids or grand-kids to be lumbered with it during the holiday. And they didn't really have to be, as it turned out. My last oncologist visit on Nov. 30th was good news, and I don't go back til Jan. 2. There's a dose of gratitude right there.

When I say I've been thinking a lot about Christmas, I'm not kidding. For example, I've had plenty of time to think about the annual lament that the day is becoming more and more commercialized. But more commercialized than what, than when? I'm 64 years old and I don't remember a time when we weren't bombarded with commercialism at Christmas. And if we're going to look to back in the day...

...“Miracle on 34th Street” wasn't about a Santa Claus for a fictional department store, with a fictional parade which captured plenty of screen time, now was it? No, it was about Macy's which, despite a couple of shaky moments, came out smelling like a rose. Gimbles didn't do too badly in the end either. Product placement in spades before we even knew what product placement was!

I gave plenty of my thinking time to folks who say, “Well... It ain't like I used to be.” What does that mean? Indoor plumbing has ruined that after-Christmas dinner trip to the outhouse? Bob Hope isn't entertaining the troops and putting it on television anymore, his being dead and all? For me, and maybe for me only, it's exactly like it used to be, as best I remember. Good times, bad times, in-between times, putting too much pressure on ourselves to have the “perfect” Christmas. It feels like it always has.

There's a line from Emerson, Lake and Palmer's “I Believe in Father Christmas,” I think rings true: “Hallelujah, Noel, be it Heaven or Hell, the Christmas we get we deserve.” I do believe the Christmas we get we deserve. But while I used to relish the hint of cynicism in the observation, I now see the hope in it. Instead of being overwhelmed by it all, we should try to hold on to the bits that make us happy. We deserve those bits, large or small.

So, is this outlook of mine because I have cancer and it's given me a new perspective? I have no idea. Is it because I have a better sense than ever of what really matters? Possibly. If I hadn't spent so many years as a cynic, would I be better able to express myself at this particular point? Almost surely.

So, tell me Jim Arnold. What have you discovered about Christmas as you mark your first one with cancer? Well, after hours and hours of thinking, and looking at Christmases past, I can honestly say... not much. Not really. Certainly nothing to offer to anyone else. This year I think I am getting the Christmas I deserve and I hope you do too because we all face our own battles everyday and Christmas should always be a time of peace and rest for each of us. Merry Christmas, everyone.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Wednesday, December 18, 2013

The Life and Hard Times of a Raggedy Ann and Andy alarm clock

One of the first must-have gifts I remember one of my kids wanting was a Raggedy Ann and Andy alarm clock. I don't know how old Jennifer was at the time, but her age certainly wasn't in double digits, most likely six or seven.

Why did she need an alarm clock? She didn't. She wanted an alarm clock. Big difference. Why did it have to be a Raggedy Ann and Andy alarm clock? Not sure, but instead of an actual alarm ringing, the two characters would shout out happy phrases to get you to wake up. My personal favorite was “Please get up, brush your teeth and start your Happy Day.”

I hated that clock. I hated it a lot. In order for it to wake Jennifer up, the volume had to cranked... to an 11. This meant of course, that it woke me up as well. Day after day: “Andy. Andy please wake up. It's time to call your friends.” “Please get up, brush your teeth and start your Happy Day.” I wasn't much of a morning person then and being awakened by the falsely chipper, condescending, plastic screeching of two pre-adolescents who spoke in sentence fragments and wouldn't shut up through numerous snoozes didn't help.

This went on for what seemed like months, until one morning I heard Ann, chipper as all get out as usual: “Andy. Andy please wake up, it's time to call your friends.” Then nothing. Silence. It was a little worrisome because Jennifer would usually kick in some sentence fragments of her own, mostly having to do with not wanting to get up at just that moment. Time passed, then Andy: “Okay, Ann, I'm awake. Let's shout it out once more.” There was a vocal reaction to that. It was muffled and raspy, but it seemed to suggest shouting was the exact wrong way to go right at that moment. Silence.

“Please get up, brush you tee........” Halfway through my favorite morning welcome I heard the unmistakable whirring sound of plastic being flung with great velocity, followed by a combination bang/cracking/spronging sounds as the object hit the wall, then... broken bits/ shrapnel? falling to the floor.

Even from another room, it was obvious that Ann wouldn't be telling us to call our friends any more, or encouraging proper dental hygiene. So, I walked over to Jen's room. Oh the humanity! I was completely unprepared for the carnage: springs and other clock doodads lay everywhere; there... was an Andy leg; here... one of Ann's hands; the perpetual smile on Andy's head just looked gruesome as it sat atop a Pooh doll; Ann's torso had landed on some clock piece that continued to move and took her torso with it... I can't even tell you what that looked like.

As a parent, I should have been outraged, but I was so happy to see the end of that clock it would have been hypocritical to lecture. So, I just asked what happened.

“I'm not sure,” she said and it was obvious she wasn't. “I just couldn't listen anymore. I have a bunch of tests today and that's what I'm getting up to face. Not calling my friends, not brushing my teeth and starting my happy day. The next thing I know, Andy and Ann bits are scattered all over the floor.... And Dad... I was happy”

Well, I was happy too. Instead of telling her that though, I probably reached into “The Great Big Book of Things Dads Need to Say, Even if They Don't Believe Them.” Platitudes, in other words. The fact that I would do it differently now doesn't really change that it's all I had then. Sorry, Jen.

As it will, my memory took its circuitous route through the experiences of my past, and the other morning it brought me the Raggedy Ann and Andy alarm clock story while I was laying in bed taking my morning inventory of how I feel, spitting the memory onto the covers, like your cat bringing you the mouse it had caught for you overnight. See, knowing that clock was going to go off and be annoying brought a small dose of anxiety to my mornings. I think it was the anxiety that was the common denominator, making the story more applicable than I would have thought.

Currently, my morning inventory involves reviewing pretty much the same items each day, always beginning with my ribs.

That's where this whole journey began, after all, checking on a broken rib after being attacked by bees. There's always pain in my ribs. Sometimes it's a lot, but usually it's a little. It's always there though and I do believe my “bee” rib cracked for the third time the other day. Sounds painful, no doubt, and it was the second time I felt it snap. This time, though, not so much.

Then it's on to the rash that's a side effect of my chemotherapy. As soon as I started taking the medicine again, the rash reappeared. This time, though, it's nowhere near as bad as it was. Last time it felt like my skin was being burned; this time it's just a slight itch in only a couple of places. Woo hoo.

Next, I check on things that only bother me off and on, to see if the day is an on day. Usually that means my sternum and my stomach. I can't discern any constant in why they should or should not bother me, so my guess is that stress is involved.

The morning inventory always ends with a visit inside my head; Think Central. Like Forrest Gump's box of chocolates, I never know what I'm going to find in there. My brain certainly causes me the most distress because, while the rest of the inventory deals with what is actually happening, given half the chance, my brain will make stuff up, just because it can.

That, in itself, would be okay if it ever made up stuff to help me cope: “That? Nah. That's nothing to worry about.”; “Everybody your age has something like that. Don't give it another thought.” But that's not how it works. My box of chocolates seems to be over flowing with nougats and I hate nougats: “Hey. Was that pain there yesterday? I don't think it was. ”; “Do you feel really flushed? I think I feel a wicked flush coming on and it's bringing a headache with it.” Gggggggggrrrrrrrrr.

All that remains then is to assemble all the data and decide whether or not I actually want to get out of bed and face the challenges inherent in living life with cancer for another day. So far, the answer has always been yes, but some days the chronic fatigue tells me just to stay in bed today. It's then that, God alone knows why, I hear echoes from the past: “Andy. Andy please wake up. It's time to call your friends.” “Please get up, brush your teeth and start your Happy Day.” And what's an aging, loving father whose older daughter loved her Raggedy Ann and Andy clock, until she didn't, supposed to do but get up brush his teeth and start his happy day?

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Sunday, December 15, 2013

Don't put off to your bucket list what you can do today

I've spent hours writing hundreds and hundreds of words the past few days on the idea of a bucket list. You know, the list of things you'd like to do before you kick the bucket...die in other words, for the less faint of heart.

If this were an older movie, you would be treated to the cliche of the waste basket overflowing with crumpled sheets of paper as our plucky writer struggled to finish his work. Not only is it not a movie, but deleting has become the new crumpling, so the waste basket remains empty, except for some paper plates and toast crumbs, and something brown that I'm afraid to look at too closely.

When I think of some of the things I've been able to write about here, some of the fears I've been able to face, being stuck writing about a bucket list should seem laughable.
But, here's the thing... I didn't want to just write about it, I wanted to write something important; something pithy; something with substance. Why? I don't know, but it probably had something to do with impressing you, the reader. Let's face it, though, someone with cancer writing about a list of things to do before you die is hardly a stop the presses moment, is it?

And that right there was the first stumbling block. How to take on the subject without coming across as the poor, sick cancer patient facing the Grim Reaper and bravely writing about doing no doubt noble things before he... you know. Yeah. Sounds like a load of hooey to me too, but it didn't stop me from spending a few hundred words, and a lot of hours I'll never get back, on it anyway. By the time I was done futzing with that, I felt like printing out the pages so I could give them the crumpling they deserved.

There were plenty of words, but no pith to be found. If I may be permitted a salute to the ever-shrinking number of Gene Pitney fans everywhere... it was a tome without pithy, if you will. I decided to come back to all that and moved on to the bigger picture items of death, dying and man's mortality.

I know. I know. That was never going to work, and for so many reasons. No one wants to talk about death or dying, especially their own. As far as being mortal goes... we all live like death is what happens to the other guy and none of us wants to hear any different. More hundreds of words, zero substance, more printing and crumpling please.

When I started working in newspapers in the fall of 1972, I was the editor of two small circulation weekly newspapers in Central New York: The North Syracuse Star and the Cicero Recorder. I was 23 years old, and looking back, it doesn't seem possible that I could have been as full of myself as I was then... and for no good reason. Seriously. I was just beginning to learn how to write; I had no idea of what it meant to live in and write about a small community; and I completely misunderstood the impact of putting unflattering things about people in the newspaper.

Lots of times the people get mad! And when they do, being a small community, they know where to find you. Even when they can't deny the truth of what you've written, they get mad anyway. In my first couple of years, people canceled their advertising, threatened to run me over if they saw me crossing the street, and in one memorable letter to the editor noted: “It's possible that the person who wrote that has brains, without specifying their exact location.”

In the midst of all this, a cooler, wiser friend made me a sign I kept by my phone for years: “When you're up to your ass in alligators, it can be hard to remember your initial objective was to drain the swamp.”

Right. I had spent hours on this bucket list deal and the message of that sign came back to me because that's exactly how I felt. I had been so determined to say something important, that I forgot the message completely.

And here's the funny part: All I was trying to say was that in the grand scheme of things a bucket list doesn't make much sense. Ta da! Message sent. We make the list and then put it away until... until what? Well, for most of us, I suppose, we put it away until we get closer to an age where the actuary tables say we're most apt to kick the bucket.

Does that really make any sense to you? We end up gambling that we'll be able to still do all this cool stuff because... because... a bunch of insurance people say it's not our time... on average? Hmmmm.

Look, I have an incurable form of cancer called multiple myeloma. It's treatable, but even if it does go into remission, I'll still have it for the rest of my life, or until they find a cure. But guess what? That doesn't mean I won't step out the door tomorrow and be run over by a bus. Actually, there are only about four buses, four small buses, total, in and around where we live, so that might be a bad example, but you get my drift, right?

If the things on your bucket list are important to you, you should stick the list on the fridge and start getting them done. That's all I wanted to say. Oh, and if any of them have to do with mending relationships, I'd start with those. Okay. Now I'm done.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Wednesday, December 11, 2013

“It's a Wonderful Life.” No it isn't. Yes it is.

For some reason, I've been thinking about my father lately. I don't actually do that very often. He died in early June, 1991, in a hospital in Morecambe, England, where he'd been for the last two years of his life, sinking deeper and deeper into dementia, which, in truth, was okay because it relieved each of us from the burden of conversation on the two times I was able get over there to visit him.

By that point, we had nothing to say to each other anyway; hadn't for years. We were a cliché; as real an example of Harry Chapin's “The Cat's in the Cradle” as you could find. As a child, he had no time for me, none, not any. Even the simplest question would be answered “Ask me again later,” which meant not at all. As an adult, I had no time for him and I made sure payback was a bitch.

I was 41 when he died. I have no idea how old he was. Really. Not a clue. I admit, I did stop asking, but there was a time I really wanted to know. Talk about family secrets. But then, I've never known how old my sisters were either. My sister Betty is still living and I guess I could ask, but I've stopped caring about that as well.

I suppose he could have come to mind because I have cancer and you tend to revisit, rethink, a lot of things as part of the journey. But I don't think that's it. My father was so removed from decisions I made about my life for so long, having cancer would've been just one more thing not to talk to him about.

Nah. I think he came to mind because, like a ripple in The Force, Frank Capra's “It's a Wonderful Life” is about to make its annual television appearance.

My dad loved Frank Capra movies. When I was still trying to get his attention, in my early 20s probably, I bought a book from the Book of the Month club called “The Name Above the Title” which chronicled Capra's years in Hollywood to that point. I really enjoyed the book, enough that I've gone back and read it again.

My father loved that book. It would have been a good thing to talk about, I think, if either of us knew how. He said what he liked and I said what I liked, but, again, just because words were exchanged, doesn't mean there was a conversation.

Looking back, I think my father might have related to the story of Capra's family coming to the United States when Frank Junior was six years old. They didn't have very much and worked hard for what they got. My parents came to this country when I was 14 and it was a very different place in 1963 than the one the Capras came to in 1903. Still, I think he could relate to the struggle and the outsidedness that Capra talked about.

But what does any of this have to do with my having cancer in 2013? More than you'd think, and “It's a Wonderful Life” would be at the heart of it.

For a long time I hated that movie; hated it big time. True, in my early 20s, I could still watch with the sense that the moral issues at its core were valid: do the right thing for the right reasons, put yourself second as you helped others, and you would receive back tenfold. How could that not be a good thing? That's the Beatitudes, brothers and sisters, straight out of the Sermon on the Mount.

But it was also around this time- if you'll forgive a terribly tortured metaphor- that I took my first bite of the apple from the tree of cynicism. I took it willingly and went back time and again for more. Terrible metaphor, right? But you know what I'm sayin'. Angels notwithstanding, I simply didn't buy the ending. It seemed to me the worst kind of Capra Corn.

Oh. Did I mention that this cynicism, angst and unhappiness coincided with my anger phase? No? Well it did. The anger legitimized all the cynical crap that poured out of me. It was a case of “Well, you'd feel the same way if you were me. If you had all this stuff going wrong in your life.”
A few years ago, though, it started to dawn on me that I might not have been looking at the big picture on all of that and I started looking at my part in the things that were so upsetting to me. After all, I was the one constant. I was always there when things didn't go right. Hmmmm.

And then I got cancer and ain't that just something a cynic could feast on? Why me? I didn't do anything to deserve this and blah, blah,blah, yackety, yackety, kum ba yah. I'm sure I could return to my apple metaphor and add a couple of additional tortured twists; perhaps along the lines of “I went back to the Forest of Cynicism, but all the trees had been chopped down and roses, carnations and dahlias had bloomed in their place.” Wow. That's embarrassing.

Anyway, suffice to say that the outpouring of support, prayers, get well wishes, “We love yous,” have made the end of “It's a Wonderful Life” real. Seriously. I had no idea that I meant so much to so many people; that people who don't even know me could sense something in me they wanted to acknowledge. I hope that doesn't sound egotistical, because whatever moved people to support me came from God and the hundreds of prayers that have been said on my behalf.
I don't know why writing about this became so important, it just did. Maybe it's because I can't be the only person in America who was irritated year after year by the end of “It's a Wonderful Life.” If you too are annoyed by the ending, because nothing like that has ever happened to you... Don't give up before the miracle happens.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Thursday, December 5, 2013

Jim and Sheri attend a happypalooza

One of the quirkier things that seems to be happening as I go through this fight with cancer, is that moments from my past pop up at the strangest times.

Quirky, I think, because of what my memory chooses to cough up. Has it really hung on to this stuff so it can bring it up now? Really?

Look, I don't remember how we ate supper at my house... ever; lights on, nobody home eating. What was my room like? No clue. Don't remember having one until we moved when I was about 11. You would think, in the grand scheme of things, those would be the things your brain might want to hold on to. Or maybe tender family moments like you used to see on TV when everything was in black and white.

Not my brain. My brain says, “Hey! Remember this? Looks like it's comin' around again, don't it?” and out comes the memory of me, Ian Fisher and Richard Wagner's “Die Meistersinger von Nurnberg.”

Ian Fisher and I were best mates when we both were in 1a2 of the First Form at the John Nielsen Institution in Paisley, Scotland, circa 1961-62. We were a bit of an odd couple in that Ian came from money and I... I came from parents who wanted to provide me with a better education. But we became best mates anyway, which in a class conscious cauldron like our school in our country at that time was no small feat.

So, Die Meistersinger: Ian, myself and a few other 11-year old boys from the First Form were loaned out to the Senior Choir because we could sing first tenor and the Senior Choir tenor section desperately needed some help. We could sing first tenor, by the way, because our voices hadn't cracked yet, late bloomers that we were.

I know we sang only a selection or two from the four-hour-plus opera, but I couldn't tell you what it was, what it was about, or even how long it lasted. What I do remember is that voices started cracking almost immediately after the first rehearsal, and continued cracking until the performance date loomed and Fisher and Arnold were the only First Form tenors left.

Our choir director got it into his head that the entire evening would be a success if we nailed one particular moment. I couldn't tell you how it fit into the grand scheme of what we were singing, but the entire John Nielsen Institution's Senior Choir's selection from Wagner's massive opera would be a rousing success if we sang two words with tremendous passion and maximum volume, with in key as a bonus: “AT LAAAAASSSSTTTTT!”

During rehearsals, we repeated that “At last” over and over, I have no idea how many times, but it was, in memory, a lot. Since neither Ian nor I knew exactly how much control we had over the whole voice-cracking thing (seriously), we thought we might be well served by not going full volume EVERY time, in case... you know. But the choir director would invariably notice and chastise us in such a smarmy, sarcastic choir director way, that we ended up just pushing the voice-cracking envelope..

Yeah, it seemed a little wacky to us at the time too, but every thing about that night became secondary to making sure our voices didn't crack. They didn't and huzzahs filled the performance hall. “Jolly good show chaps” and all that.

Now, the five weeks since my last face-to-face meeting with my oncologist have seemed excruciatingly more than 35 days. As Dec. 4 came nearer, I began to hear Wagner's “AT LAST” playing in my head. At first, it played sotto voce, nice and quiet, but over the last couple of days had the roar and passion that would have made our John Nielsen Institution Senior Choir director proud.

Obviously it would have been better, probably, not to put that much importance on one appointment, one stop on the journey. But try telling my brain that.

But AT LAST we met with the oncologist and were able to talk about results rather than the disease.

The chemotherapy is working! The biggest marker of progress, as he had said it would be, was the number of proteins that my bone marrow was putting into the rest of my system. The first time it was measured the number was 4,800. It's supposed to be zero. This time it was 700. Still a significant number, but... The doctor was happy, our nurse was happy, Sheri was happy, I was happy. It was a regular happypalooza!!

We thought the treatment plan might change, but after seeing the results, the doctor decided to put me back on the drug and dosage that I had been on, the same as had caused me to suffer such a terrible rash. He pointed out that the rash was a side effect, and all treatment had its side effects. Overall, I guess the rash, while not very pleasant, is nowhere near the worst. However, if I develop large water blisters as part of it... that would move it up the bad scale considerably. Good to know.

I'm embarrassed to admit that I spent a lot of the afternoon/evening feeling confused. It seemed like I should have been happier. Well, that's not quite right. I should have been more demonstrably happy, maybe. Sheri was the only one to see me, but it seemed like I was sending an unclear message. Kind of a reverse, “If you're happy and you know it, clap your hands.”

But as I processed what was happening, I realized that I was used to setbacks and dealing with them. The good news left me with all this leftover anxiety and worry and I had no place to put it! This cancer thing is really tricky, boy.

Of course, I still have cancer. I'm still taking medication that will most likely cause a rash that will keep me awake nights on end. I still have pain from the lesions in my ribs and the fight is far from over. I'm going into the new year with a new oncologist, when I loved the one I had.

But you know what? That's for tomorrow's big think. Right now, Sheri and I are just basking in the glow of the good news before we start basking in the glow from my rash.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Monday, December 2, 2013

Oh, the horror! I was just thinking...

I'm tired of thinking about having cancer.

I mean, I wake up thinking about it; I fall asleep thinking about, and think about it during most of the hours in between.

It wouldn't be so bad if there was some point to all that thinking. There isn't. It's not as if thinking harder will change anything; or thinking longer might lead to some new happy place. Nope. It's just good old-fashioned, wheel-spinning, energy-consuming, time-wasting thinking.

It reminds me of conjugating verbs in French class: I work, you work, he/she works, we work, you work, they work. Great. But if you don't then know how to use the verb in everyday speech, it just becomes that much more useless knowledge cluttering up your brain, like Cary Grant's real name, the 21st vice president of the United States or the seventh man to set foot on the moon.

In my case, the less I'm able to think about other things, the more I feel like that guy with cancer who writes about it, and little else. Would it have been a better decision not to write about it? Should I have chosen to go through it quietly, telling just people who needed to know only what I wanted them to know? Would I be forced to think about it less?

No. In fact, hell no. It's only when I sit down to share with you what's been going on, that the thinking seems to take any useful tack. Writing about it makes me focus on this bit, that bit, this thought, that feeling, that specific part of my treatment. The rest of the time the thinking is just so much noise: “I have cancer. I have cancer. I wish I didn't have cancer. But you do. Yes I do. How'd that happen? Don't know. Guess it doesn't matter. I have cancer, cancer, cancer. Look at that guy over there. He looks like he feels sorry for me cause I have cancer. You don't even know that guy. So? Cancer, cancer, cancer.” And on and on and on.

So what's the end result of all this thinking? Trick question; there is no end to it, but there can be an occasional revelation.

Consider this: I have never been known to exhibit responsible phone behavior. People, including our kids, know that about me. They know chances were slim that I would call them back... because I was irresponsible. You could count on my phone irresponsibility!

Now though, I have to be aware that many of the people who phone, write or text me, don't know that. They might easily interpret no reply as something bad. They might think I'm having a hard day, or feeling physically sicker, or I may have fallen and I can't get up. So, it takes time, but I try to be aware of the possibilities and respond. Responsibility man, who needs it?

I also see that spending so much time thinking about having cancer makes it harder to consider other roles I still need to fulfill.

I'm a husband, father, stepfather, grandfather, whether I have cancer or not, and Christmas is coming.

I trust I'm a friend to my friends, which requires thinking about them, considering their needs and issues. I have to find think time for them, somehow.

I'm a co-worker who, according to the cards and emails I'm receiving from them, could be counted on to lighten things up and make sure we could laugh at ourselves. How's that working out? I haven't been able to go to works for weeks because I am unable to focus on much of anything but myself.

I'm still the guy grieving over the loss of our cat Samantha. We had to put her to sleep this summer after 14 years of constant companionship. I found out I was sick about five weeks after she died. I continue to shed more tears over her loss than I do my own situation.

The one person who would have reveled in all this thinking would have been my mother. She was always after me to think more/harder/better/longer. She thought virtually any situation could be helped by extra thinking. I remember she'd quite often suggest the value of an extra thought: “If you think yerrrr goin' to do that yerrrrr own rrrrrrrrridiculous way, ye've got anotherrrrrrr think comin', so ye do.”

Oh... while I'm thinking of it (ha ha)- this Wednesday will be my first oncologist visit since we started treating my cancer. In the five weeks since we made the appointment, a lot has happened, not the least of which was my negative reaction to the chemotherapy drug at the center of the treatment, which forced us to stop using it only a couple of days into my second course.

So, the focus of our session on Wednesday will be on regrouping, and adjusting the initial treatment plan to fit the new reality of my reaction to the medication. I had thought that this would be he first time I would get some idea what, if any, impact the treatment has had on the multiple myeloma. And that may still happen, but it's also become clear that this fight is going to go the full 15 rounds. I was naive to think otherwise.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Wednesday, November 27, 2013

Don't cry for me Argentina or...thankful is an excellent thing to be

Thanksgiving is here, or maybe it's come and gone by the time you read this. Anyway...

Hard to be too critical of a holiday that asks you to stop, take a look at yourself, and give thanks for what you have, what you've been given, all the while encouraging you to eat like you had four stomachs.

Of course, I'm not sure that's what Thanksgiving is anymore, except for the eating part. When requests for our pledge not to shop on Thanksgiving are popping up all over the Internet, one can't help but think we took our eye off the ball.

We didn't celebrate Thanksgiving in Scotland, obviously, but you wouldn't have the holiday without us and the rest of Britain. After all, we pretty much made life so unbearable for the Puritans in our country that most of the dour, fun-hating, overwrought bunch decided to take their chances in the wilderness that was this country then. You're welcome.

The first Thanksgiving we celebrated was in 1963, the November John F. Kennedy was assassinated. Though I was 14 at the time, what I actually remember about the assassination is mostly the bits I've seen replayed over and over for 50 years. What was it like in my house? Couldn't tell you. First Thanksgiving at my house? Couldn't tell you.

So on a normal fourth Thursday in November, at least since we've moved to Maine, I would usually work the holiday so that people who wanted to celebrate with their families could. Sheri and I would always find a quiet way to express the gratitude we felt, and have some turkey at the same time; sometimes we were even able to do that on the fourth Thursday.

But this is not a normal Thanksgiving. This is the one where I have cancer. This is the particular fourth Thursday in November where my family has to celebrate the holiday with my illness never too far from their thoughts.

My closest friends who are so grateful for what they have, find worry about the cancer that I have creeping in. You want to hear the craziest thing people have said to me as they struggle to help me through all of this? “I feel bad celebrating the holiday knowing what you're going through.”

Believe me, I hear the love in those words; I hear concern for me I had no idea was even possible and I'm deeply touched. But, the thought also makes me sad.

The touched/sad conflict is important. But it's hard to express “what you're going through” without sounding like I've been dipping into the Big Book of Clichés, or watching way too many movies on AMC: Evita's “Don't Cry for me Argentina;” Bogart's “It's easy to see our problems don't amount to a hill of beans” speech from “Casablanca;” almost any sentiment expressed by any Thanksgiving greeting card. And the capper, the ever loving capper... Lou Gehrig's speech in “Pride of the Yankees: “Today I feel like the luckiest man alive,” though that feels a bit over the top since it's still not exactly clear how sick I am, other than the Stage 3 note on my initial paperwork.

As a country, there seems to be a whole lot of hand wringing over whether the true meaning of Christmas is being lost. What about the true meaning of Thanksgiving? As Black Friday has crept into Black Thursday night, and the day after Halloween is steadily becoming the kick-off to the Christmas shopping season, don't you think we've lost something important? Of course we have.

But here I sit with my multiple myeloma, and my big writer's ego afraid to share what I really feel. And why would that be? Resorting to clichés? Surely. Sounding like Saul after he saw the light on his way to Tarsus? Grandiose, perhaps, but maybe a little bit? Afraid people will see denial where I see truth? You betcha.

I read that back to myself and wonder: “Don't you think you've lost something important.” Of course I have. I started writing this blog to record my journey, my feelings as I learned to deal with my cancer, and with the hope that maybe it might help one or two of the dozens of people who would actually read it. Easy-peasy.

But quickly friends began asking if they could post my blogs on their Facebook pages; could they Tweet it; could they put it on Tumblr? Dozens became hundreds, and then my friends at the Kennebec Journal and Morning Sentinel asked if the could run my posts in the papers and online periodically and hundreds became thousands. People thought there was value in what I was writing; that it could help people who were hurting, not only over cancer, but countless other maladies of the spirit. It suddenly seemed like large responsibility. And I think I might have taken my eye off the ball. How I wrote things seemed to be becoming as important as what I wrote. Lord, even this last paragraph sounds like Jim's First Epistle to the Maineinites... “maladies of the spirit.”? Yikes.
So...Here's how I feel on the first Thanksgiving that Jim has cancer.

More than almost anything else, I feel a tremendous sense of clarity. I suppose it's a little bit like “Don't Sweat the Small Stuff” on massive doses of Red Bull. What is important jumps out at me, and what isn't shrivels away. There is a lot more shriveling than jumping out at, by the way. Is this too terrific to last? Dunno. Don't care. It makes today much better and today is what we have.

I have so much gratitude, so much to be thankful for... Though I certainty wouldn't recommend it, if you could see inside my head, you would be shocked at how much gratitude is there, and how little remorse. Do I wish I didn't have cancer? Well, duh, of course I do. I'm grateful, not an idiot. Besides, as my Kilbirnie granny back in Scotland always used to say: “If wishes werrrre horrrrrrses, beggarrrrrrs would rrrrride.”

It's what I live every day is what makes this the best of my 50 Thanksgivings. I have a wife whose love is something I never thought someone like me could experience. I have children who have survived my parenting to become daughters and mothers whose abilities baffle me, in a good way. I have stepchildren who have shown their love for me and assimilated me into their lives. It's no Brady Bunch, it's better- it's something I cherish. I have co-workers who email me heir support and keep me cheered up, and some of them I haven't seen in seven years.

The cancer, the multiple myeloma itself is incurable, but can be treatable. I have a medical team that makes me feel like my odds are pretty good. 

Put it all together, my cancer v. the rest of my life and Happy Thanksgiving for the Arnolds it is.

So don't cry for me Argentina; there's no need. Have a great Thanksgiving. Try not to obsess too much over the meal. And if you could get around to reconciling with that relative you swore you never would reconcile with, that would be good.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.

Wednesday, November 20, 2013

“Everybody has a plan until they get punched in the face.”

“Everybody has a plan until they get punched in the face."

Mike Tyson

Who knew I would ever empathize with Mike Tyson, at least metaphorically if not physically.

I've been in one fist fight in my adult life. It came when I was working the lights and sound system at a bar, which was little more than barn, with a bar, some tables, lights on the walls and a dance floor, with lights below. Admission was $2.00 (1972) and entitled the entered to drink all the beer and wine they could drink free of charge. I know what you're thinking: “What could possibly go wrong in a situation like that?” If you're thinking “Plenty,” you pretty much nailed it.

We opened at 9 p.m. And one of my big tasks was not to run the strobe lights after 11 p.m. They made too many people throw up. No strobes after 11. Check. Now, it has sort of a “Gremlins” ring to it. Then it was just one of those things I didn't really want to see regardless of the time of day.

Big task number two: Watch for fights. There were huge trouble lights in each corner of the place. When I saw a fight break out, I turned on the appropriate light and the bouncers descended on the scene and beat the crap out of anyone involved, with no concern for collateral damage. The problem with that plan was, at my work console, the trouble lights weren't marked as to which went to which corner This resulted in our eager bouncers, occasionally running from corner to corner in search of an altercation. Since they had been smoking hash, taking amphetamines and washing it all down with peppermint schnapps since before we opened, every night became “Anything Can Happen Night.”

On the night in question, the bouncers were busy inside and some yahoo was kicking and punching some of my bartender friends as we stood around the parking lot. I didn't like that he was doing that; something snapped in my head and I got into with the guy. It didn't last long. I had seen enough fights from my perch that I knew just what to do. I pulled his coat up over his head so he couldn't use his arms, pounded him repeatedly until the bouncers showed up, laughing hysterically, by the way, at the sight of me in a fight, and pulled me off the guy. Not a mark on me baby; one fight, one win. I retired undefeated.

So, there's that.

Growing up in Scotland in the 1950s, I was no stranger to violence. Catholics and Protestants went to separate schools, and there was plenty of fighting over that. Only the fact that I had plenty of Catholic friends saved me from many's an ambush on the way home from school. Each side generally traveled in packs for safety. Good luck if you were trying to go it alone.

Teachers in our Protestant school could pretty much punish you with whatever was at hand, including the back of their hand, usually on the back of our head, usually in a sneak attack. They each had a belt and teacher comparisons were more concerned with how good/bad they were at using it than whether or not you might actually learn something. I once saw my mechanical draw teacher break a one by one board over a boy's back. His crime? Though I did not know it at the time, he was going through puberty and each time his voice cracked, all the other 12-year-old kids would laugh. I never heard that kid speak in class again.

But none of that's what draws me to the Tyson quote.

Each Tuesday when one of my nurses from the Alfond Clinic calls to check on how I'm doing, one of the first questions is invariably, “Have you developed any kind of a rash?” Even I figured it was something to be concerned so I WAS paying attention, and besides, the answer was always “No.”

No became maybe last Thursday. I noticed a few spots on my left arm; could have been anything. But I was on high rash alert, so I called the clinic, they called my doctor, the clinic called me back.

“The doctor doesn't want to do anything right now. Just monitor it and let us know if it worsens.” That made sense to me. I probably wouldn't have called if they hadn't kept asking. My little joke to the nurse about “Wait till it gets worse has always been one of my favorite diagnoses,” fell flat when she felt compelled to explain that that's not what they meant. Oy

So, Friday came and went with no change. Saturday came and the rash now covered my lower left leg. Not one to panic, I waited. Periodic checks saw it cover my left leg completely up to the top of my thigh, saw it move to the right leg and do the same. And when I say rash, you might better picture burns because that's what my skin looked liked. Burned. I could show you a picture, but I don't even like looking at it and you might be in he middle of eating when you looked at it.

Sunday morning, first thing, I was put in touch with the oncologist on-call who immediately told me to stop taking my principal chemo. “Everybody has a plan until they get punched in the face.” It felt like my brain just stopped; at least the part that does my thinking and talking stopped; the metaphorical punch in the face.

When it started up again it was like... when we used to have record players with variable speeds and you forgot to change from 33 rpm to 45. You would get this real sludgy sound before the turntable caught up. “What?” the voice that sounded so much slower than mine finally managed.

The doctor repeated herself. “The medicine is almost surely causing your rash and you need to stop taking it immediately.” The rest of the conversation was more of the same, ending with her saying she would make sure my oncologist and his staff saw her notes in my file, “And the best of luck to you.” which at that exact moment sounded like, “Do you want to use a blindfold.” Don't get me wrong. She was wonderful, it was her message that sucked
Here's why it felt like a punch in the face: In the beginning of my treatment, which was only nine weeks ago but feels like nine months, we had been taking punch after punch of bad news and had no real way of fighting back. Then we developed our plan, with this particular medicine at its core. Of all the medicines I had to take that was the chemotherapy. It was the one we would fight back with
When she said I needed to stop taking it... I guess I felt about as defenseless as that kid in my mechanical drawing class 40-some years ago. I didn't do anything and I followed all the rules, and it felt like I was being punished anyway. If you take that away aren't we just letting cancer run free? “C'mon kids, put your chompers on and get to work! Good eatin' today. This is going to be great!!!”

Sunday and Monday were not great days in the Arnold household. Sheri and I are rarely down at the same time and we were definitely down, doobie doo, down down. I joke now, but it was a horrible time to go through. There was a blackness in our home. When we are both suffering, all we can do is really hunker down, try not to hurt each other, and just pray for it to be over. Which is what it was when we arrived Tuesday morning, early, at the clinic. There was more poking and prodding, dozens of questions, a little blood work (which was fine) and a promise to review the notes with the doctor and get back to me, which is what happened.

“The doctor wants you to stay off the chemo till he sees you in two weeks.” Everybody has a plan until they get punched in he face.

“Two weeks?” I got over the sluggishness much quicker this time. “But that means we won't be treating the myeloma for two weeks. That doesn't make me feel very comfortable.”

“The steroids actually do fight the myeloma.”

“Glad to know they do something besides making me feel like a lunatic.”

I was trying hard not to be too snarky. She was just the messenger after all. I'm not sure how successful I was. But the next part was good.

“We've had to go through this with other patients,” she said assuredly. “It doesn't hurt what we're trying to do. It's a way of getting your body ready for whatever the doctor decides to do next. It doesn't do you any harm at all.”

That had the ring of malarkey to it. But when you spread as much of it as I've been known to do, you tend to see malarky in plenty of places it isn't.

“And remember,” she added, “the steroids will still be working on the myeloma.”


In the end, of course, I accepted, even embraced, what she said because it made me feel better. Besides, and I say this with absolutely no disrespect, it reminded me of Officer Obie in “Alice's Restaurant.” The clinic has the 8x10 color glossy photos with the circles and the arrows and a paragraph on the back of each one. I, on the other had, have the support of family and friends and steroids. Which is marvelous, of course, but doesn't really provide substance to an argument over treatment decisions.

Hmm. Maybe it's just because Thanksgiving is so close, but I'm giving this one to Officer Obie and the clinic. So I may be fighting with one hand tied behind my back, but fighting I am. Good for us. Too bad cancer doesn't have a jacket I can pull over its head.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere

Tuesday, November 12, 2013

If I'd known it was important, I might have paid more attention, but I doubt it

When I was writing about how it feels to have cancer, it wasn't until I had posted the blog that I realized something I had aways thought I would feel hadn't even come up.

See, I always believed it would feel like some sort of creepy-crawly was moving through my body, chomping away like some crazed Ms. Pacman, or worse, Stephen King's Langoliers, or, worse yet, the Roto Rooter guy. I was sure it was something you would be so aware of that you could chart the disease's progress by just being still and listening to the... well....chomping is what it would be. OK, maybe not chomping, but it seems like you would know something was in there and moving.

I confess, even my wife Sheri had a hard time smiling and waving at that one and she's smiled and waved at a lot of stuff in the 20 years we've been together.

So, no chomping, no moving, no sense whatsoever of where the cancer is. By the nature of multiple myeloma, I guess it's pretty widespread but how helpful is that? Not very, if you're actually asking me.

Plan B, then. I decided I would poke, prod, push, squeeze parts of my body, to see if I could feel somethng out of the ordinary; something not as it should be. You may already see the huge flaw in that particular approach, but maybe not, so let me continue.

In the spring of 1968, middle of my sophomore year in college, I transferred from SUNY Brockport to SUNY Geneseo, ostensibly to major in speech pathology and audiology. In actual fact it was to major in reuniting with my summer romance, a very nice woman.

Guess what? I failed in both endeavors.

The romance seemed like the far greater loss at the time. Figures, right? But really, how could it have been otherwise? I was 18 and had been a stranger in this strange land you call America for just five years. I was at a new school where the only person I knew very well spent most of her free time avoiding me. I wept...a lot.

The speech pathology major-thingy, though. Who knew? Before abandoning the effort, I spent 18 months studying... well, you couldn't call it studying, really. It was more like being around people who were studying... speech pathology and audiology. All I learned in that time was don't put anything in your ear smaller than your elbow, and I learned that on the second day.

In the 40-plus years I have found someone willing to pay me to write, I have no idea how often the words “I wish I had paid more attention” appear. I can tell you this, though: it's a lot and the thought was always a lament. In fact, I'm making the same wish now.

If I had paid more attention- oh hell, make that any attention- in my speech pathology anatomy and physiology classes, I would be so much better prepared to get useful information from my poking, prodding, pushing and squeezing. Body parts were studied!!!

But I didn't pay attention. As a result, what I know about anatomy is pretty much limited to the lyrics of “Dem Bones, Dem Bones, Dem Dry Bones.” You know: “Your toe bone connected to your foot bone. Your foot bone connected to your heel bone” all the way up to “Your neck bone connected to your head bone.” I'm not saying that isn't good information. It is. And since I have bone marrow cancer, you would think it would be all kinds of helpful. But alas, as I prod, poke etc., I need more detail. Like, has my leg bone always felt like that or has the myeloma weakened it?

And there, of course is the flaw in Plan B. I never was much on poking, prodding etc. before, so I have nothing to compare it to. Know what I mean?... Was that lump always there? Dunno. Did it always hurt when I did that? Dunno. Did my shinbone always give way when I pushed on it? Dunno.

Well, this was going nowhere fast. So, as I often do, I decided to drag my wife Sheri into it... Hey. Has my forearm always looked like this? Dunno. Can I push on your shinbone to see what it does? No. Can I squeeze your head to see if contracts?,,,,,,,,Sheri?........Sheri?

I made the last one up, about squeezing her head. And, yes, I know the whole comparison thing is pretty foolish, but it does give me the chance to take a little of the fear away, like when you used to have to burp Tupperware. When we talk about it, whatever “it” may be, it shrinks; every time.

Besides, over the course of our 20 years together, Sheri has handled plenty of tough questions. She is actually the only person I have asked the question that has hung over our lives every day since Sept. 6, 2013; not always openly present, but always there: “Why did I get cancer?” Why not, right? Who would I want to get it instead?

Yeah. I know the question has plenty of answers; it just doesn't have any I happen to like. Sheri knows that too. That's why, I think, instead of saying anything, she reached over and took my hands in hers, squeezed them and suddenly the why didn't matter. Because in some unorthodox, non-medical way it became clear that the question should have been, “Why did we get cancer?” It's a proven psychological fact that two people joined in a common fight won't be easily beaten.

So, screw you cancer.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Wednesday, November 6, 2013

So, Jim, how do you really feel about all this?

No one has come right out and asked me what it feels like to have cancer. Whatever happened to inquiring minds want to know?... Wait... You don't think it would be rude to ask me that, do you? Really? Wow. Well, thanks for being sensitive everyone. Far out.

But you have wondered, haven't you? I mean, if for no other reason than you might be able to pick up tips on how you can avoid getting it. Right? In these days where social media is king, I can see a very interesting string developing. But count me out. I have no tips. One day I didn't have it, and then I did. “Don't take any wooden nickels” is a better tip than anything I could you give you about avoiding cancer.

In this blog I really try to write about me and my cancer; each person's journey is so different. But I also know some bits are the same- the feeling of powerlessness, physical weakening, pain, fear, reliance on medicines. These things, and a lot more, are always with us, each day's story is about how we live our lives... anyway. And it's more than just cancer patients; we each have our demons to chase, battles to fight, fears to overcome, tears to shed. For me, though, right now, cancer is my elephant in the room, so that is what I'm writing about.

Since it would seem the whole inquisitive/interested/rude line has been blurred, maybe I should just ask myself how it feels for Jim Arnold to have cancer. You may have trouble believing this, but I'm kind of interested in what I have to say about it myself. That is why I write; for an audience of me, or of thousands, it makes me focus on the subject at hand. More than that, what I think I wanted to write often becomes what I was supposed to write, and I don't always like the difference. I know. Creepy. I don't get it either, but it's why I can honestly tell you, with the written equivalent of looking you in the eye, that I'm as interested as you are to see what I have to say about Jim Arnold having cancer.

So, Jim Arnold, how do feel about having cancer? Well, what day is it? Did I get much sleep? How much pain am I dealing with today? Did my treatment plan call for taking my steroids today? What's the reading on my denial-o-meter?

Don't get me wrong. I feel crappy. I feel resentful. I feel angry. I feel betrayed. I feel lost. I feel scared. And despite an ever-growing number of people offering their support, prayers and love, there are times I feel pretty lonely.

Those things are in the mix, at one point or another, every day, along with all the other stuff involved in getting the malignant cells out of my bone marrow, putting them with the pile of manure I've cleared to find that pony, and getting on with facing the next life challenge.

I know I don't talk much about being scared, probably because I don't feel scared all that often. There is no recovery in being scared; no path to remission; scared takes, it never gives. I focus on the support of my family and friends, in the gratitude I feel every day that I get to live the life that I live. That's where the recovery is, with my slightly beaten up, beautiful smelling pony at the end of it.

I think that “scared” is the main reason I'm so determined to live one day a time. I can't/won't live scared all day, every day, especially since we aren't far enough along in my treatment to know what, specifically I have to fear. Multiple myeloma seems to have a fairly high remission rate overall, and there is some encouragement in that

So, sure, there are times I feel scared, but they don't last. Hey, wait a minute... I didn't just sound like I had spunk, did I? I hate spunk. I'm just one person in millions who are trying to enjoy their days while co-existing with the knowledge that they are living many people's worst nightmare.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Monday, November 4, 2013

The Universe: So funny I forgot to laugh

|”Hey Arnold- hahahahahahahaahahahahahahahahahahahahahahahaha!!!!”
The Universe
October 29, 2013

“Hey Universe- shutupshutupshutupshutupshutupshutupshutupshutupshutup!!!!”
Jim Arnold
Later that same day

Maybe some butterfly in the South China Sea flapped its wings last week thereby knocking everything I thought I knew about my ongoing recovery into a cocked hat. Probably not, but the timing was too cruel to be coincidental.

I had just finished the rough draft of my previous post lamenting that I would not see my oncologist for some six weeks about 4 a.m. on Tuesday, then posted it around 8:15 a.m. If you missed it, and don't want to take the time now to read through it, here's the gist: I have to let my treatment run its course, which means I wouldn't really see the doctor again until Dec. 4. There was also some gratuitous whining, minor hand wringing and about half a pinch of woe is me.

Look, I understand that things change. I'm a go-with-the-flow-kinda guy. But on this particular Tuesday morning the change seemed to come along so quick, it had the feel of the arbitrary. During my weekly Tuesday morning call with the clinic, I had mentioned a shortness of breath and tightness in my chest, and by 12:30 p.m. I was back at the clinic undergoing more tests. This is why I try to stay as focused in today as I can. Never mind the time wasted worrying about things that never happen, problems that never arrive... There are times it just becomes so clear that the Universe has developed its own play list and it supersedes anything you may have had in mind.

Seems that the breathing thing raised a red flag about blood clots on my lungs (that couldn't be good), a concern made deeper by the fact that that is known side effect of my principal chemo drug. A red flag indeed, one of a size rarely seen outside a national communist party meeting in 1956 Moscow.

As it turned out, it was not blood clots, but it was a long, fairly stressful seven hours before I would know that. I had initially been so sure that this wasn't going to be a big deal (seriously what's wrong with this guy, right?) that I had assured Sheri she could go ahead with her own plans, and I'd just run into the clinic and probably be home before she was. I could tell she didn't love the idea, but she agreed. Oh, Jim, Jim, Jim, why you no think so good? I won't do that again. The staff was great. They kept me informed, made sure I knew what was going on and why, but we've both learned it takes two to hear what is actually being said at these visits.

So in this case, I had to have a scan to see if there were clots on my lungs. To do that, I needed to go from the Alfond Center to the Augusta Hospital. That's good. Traveling widens the horizons, I hear. But as the preliminaries were wrapping up and we were just about to begin the process itself, I realized some of what the clinician was saying didn't sound right; with no Sheri backup, my general lack of attention seemed to have caught up with me. Instead of the smooth, calming humenhumenahumena that I'd come to associate with CAT scans: “Did she just say 'radiation'?” “Wait. Nuclear what?” “Gamma rays?”

I'm far from an alarmist when it comes to nuclear medicine. I'm all for it. But I would be lying if I didn't say it was a little disconcerting to be strapped onto a table listening to jargon that could have come straight from a 1950s black and white science fiction movie, only to realize the little green man was me! And gamma rays? Gamma rays? All I know about gamma rays is what I learned from reading Paul Zindel's play “The Effect of Gamma Rays on Man in the Moon Marigolds,” which, believe me, was not a lot when you get right down to it.

When we had finished the relatively pain-free test and I was on my way out, I saw that the path to and from the test was clearly marked as nuclear medicine. For all the use my big brain was in the situation, the signs might as well have said, “This way to the monkey house,” or “Buy one, get one free.”

Well, if it wasn't blood clots, you ask, what was it? It was stress. Yeah. Good old fashioned stress. When it came right down to it, my feeling alright, relatively calm, and all, didn't mean doodly squat. I was stressed out enough to convince myself I was having trouble breathing.

Once again, I was left with the feeling that I am the last one anybody should ask about my health. My brain will be happy to tell me all kinds of crap, with fava beans and a nice chianti, and left to my own devices, I'm just as apt to take whatever it tells me as true.

So, like bringing your older, tougher sibling along to make sure the school bully doesn't beat you up again, I'm bringing Sheri with me every time to poke my big brain in the eye when it gets too big for its breeches...As it were.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Tuesday, October 29, 2013

It's going to be how many weeks??

In the fall of 1966 I was an incoming freshman at the State University of New York College at Brockport. Official arrival day was Saturday, but I had gotten there on Friday night and decided to take a walk around the village. As you could probably guess, it didn't take very long: this store, that store, small store, smaller store, bar, bar, bar and the movie theater.

The message on the marquee of the cinema was “Welcome Class of 1970.” It stopped me dead in my tracks- 1970 seemed so far away, sounded so exotic. Turns out that would be the last time I ever had that feeling. As clichés go, the one about time passing quicker and quicker the older you get is a dozy.

One minute I'm in high school singing along with The Who, “Hope I die before I get old!” Then what seems like it could only have been weeks later, I spend part of my 64th birthday considering how close that particular wish came to being granted, and the rest of it realizing The Beatles' “When I'm 64” no longer needs any speculation on my part.

Towards the end of the 1970s I directed a production of the Anthony Newley-Leslie Bricusse musical, “Stop the World I Want to Get Off.” Nice little musical; couple of songs most people can sing along with- “What Kind of Fool am I?” “Once in a Lifetime.” But as God is my witness, I only did it because I thought the script might have some pointers on how to do it...stop the world, that is. I know. Whaaat? Maybe you had to be there, although I WAS there and I still have no clue what I was thinking.

Some 35 years after that, I'm still stumbling along treating life like it was my own personal chew toy, telling anyone who'll listen that I'm blessed and have been given everything I ever needed and then some. Oh lucky man, indeed. But... know...I was thinking about this whole time rushing by thing...what could it hurt to ask for things to slow down just a wee bit. Whaaat? I guess we can all say the next bit in unison: “Be careful what you ask for.” Yeah, well... there is that.

Turns out being diagnosed with multiple myeloma will put a cramp in the whole time is rushing by thing, in a couple of ways.

First, with so little solid information to go on, my Wednesday oncologist appointments became really important to me and Sheri. No longer was every day a variation on the same theme as the day before and the day after. No longer did I have to ask what day of the week it was, because each day held a position relative to Wednesday: Monday was two days from Wednesday, for example. Each day mattered and no longer did the days stretch out in an endless path. We were going Wednesday to Wednesday and no longer was I left to wonder where the time had gone. I knew, in painstakingly slow detail, exactly where it had gone.

The second way was that almost everyone around me continued on the Crazy Train- as they should- so busy trying to deal with their now that, say, four weeks down the road, they would look back and find gaps in their time line, and not have a clue what had previously filled the now-empty spaces.

The whole thing became moot (which is just another way of saying it became so much, blah, blah, blah) at my latest appointment. Because of the nature of the disease, and our treatment of it, the oncologist told us I wouldn't see him again for close to six weeks. In the best be careful what you ask for tradition, before I got sick, I would have said, “Six weeks? Pish tosh. They'll go by before you know it.” Ummmm. No they won't.

But they will go by, each day lasting the mandatory 24 hours, though I'm pretty sure some will seem much longer while very few, if any, will seem shorter. Then we'll have test results and go on to the next phase of my recovery.

When I was about 15, and had been in this country from Scotland for just over a year, I went to Playland in Rye, NY (where they filmed the end of the movie “Big”) with friends from our church youth group. I had never even seen a roller coaster in person before, so I trus...trus...trusted them when they said it would be fun, especially if I sat in the very front seat. I guess it didn't register at the time that everyone else seemed to be sitting at least 10 rows back.

Yeah, the whole thing was horrible. But, there was an actual worst moment. At the very top of this coaster was a tunnel, long enough to hold the entire coaster in complete darkness. This is where my front seat position would really matter, because when we popped out of the tunnel, at the coaster's highest point, we dropped straight down... straight down. I'm not too proud to admit there was some serious screaming that night, I can assure you.

I'm not 15 anymore, but still... As I begin this particular part of my journey, I can see where serious screaming remains one of my better options.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Wednesday, October 23, 2013

Hey. I'm usually up to my neck in humble; ask anyone

For me, having cancer has been a humbling experience. And not just in the capital H sense that you are forced to face your mortality; that you realize you aren't “all that” after all; that, indeed, you do have to die of something and that your hopes of dying in some cool manner just took a major hit.

For the record, though. I never really came up with a cool way to die. I just didn't want it to happen in such a way that it became the funny tag at end of the 11 o'clock news. You know... where the anchors get to share a chuckle and remind you, that despite all the hairspray and expensive haircuts and couture clothes, they aren't all that different from you and me.

My big fear was the waterbed. Back in the day, my first wife Janice and I had a waterbed (if you weren't around then to know how cool they once were, you don't get to make geek/loser comments) on the second story of our pretty old house. Each time I had to drain it for a leak and refill it WITH A GARDEN HOSE, I became convinced it was going to fall through the floor into the living room, where I was sitting, hoping it wouldn't, and crush me, setting up the perfect chuckle for the end of the broadcast.

“A Mattydale man was killed this evening when the waterbed he had just filled crashed through the floor and crushed him.” The team struggles to put on its best serious face, but you can hear one of the tech guys off camera working to suppress a laugh. The on camera serious faces devolve into smirks, which turn into lip biting, which turns, just as it did when they were each in the fifth grade, into gales of laughter. Laughadethaphobia. I have it, you don't want it.

If having cancer is a humbling experience, then believe me, living with it day to day is even more so.

I said right off the bat that I was writing this blog, as I had always used writing, as a way to help me process information and to help me cope with the seriousness of the situation. In truth, I figured readership would be in the low, low dozens. Humbled, the blogs have already had hundreds of views. In truth the numbers don't mean as much as the things people are saying, the prayers they are offering, the support for me, Sheri, Jennifer and Alison. Humbled. What the heck did I ever do to earn that?

How many times over the years to you suppose you've seen the scene, usually in black and white, where the too serious doctor and his somewhat befuddled patient, Bob, have “the conversation.”

“Well, Bob. I'm going to give it to you straight. You aren't going to win this one. In fact, I suggest you don't bother renewing any of your magazine subscriptions.”

For his part, Bob, his befuddlement obviously now in high gear, finishes buttoning his shirt, puts his tie and suit jacket back on and leaves the office and does what? Accepts the situation stoically? Falls to his knees and prays to God, as he usually does, when he's desperate? Starts bargaining- “Get me out of this one God and I'll become your loving and loyal servant. And I really mean it this time.” Begins general untargeted, non-specific groveling? Or just plain gives up and heads to the nearest bar?

No matter what age I was when I put myself into “the conversation,” I always had time to think, rationalize and come up with a response. Usually one that cast me in the most favorable light, though groveling was never far from first choice.

As it turned out though, time was the one thing I did not have. While still overwhelmed with having multiple myeloma, while at the same time being unsure of what that actually meant, you had texted, phoned, Facebooked, Tweeted, emailed such strong support for the fight ahead and for the person that you considered me to be, the decision had been made. I would accept the prayers you so willingly offered up, accept your hugs, virtual and real, and believe you when you said how important I was to you and how you lived your life. As my ego began to ease out of its cage to denigrate much of what you had said, the sheer volume of your love and well wishes grabbed that little sneak by the heels and pulled it back where it belonged- caged and gagged.

It was also very humbling to know that for all the people I have known who had cancer, I didn't offer up that kind of support for any of them. Sure, I said all the right things and even ran a few errands, and I did feel genuinely sad, but a lot of that had to do with giving the appearance of doing the right thing. My father died of cancer in an English hospital, my mother in a hospital in Scotland, and I was noticeably absent for both. The physical absence made sense, but emotional support? That particular tank was empty. Besides, I had places to go and people to see.

When my older sister Moira died from cancer in a Glenn's Falls, NY, hospital I was there. In fact, I was the only person, family or otherwise, who was there when she drew her last breath. I would be remiss if I did not point out the irony in this situation, though. This time Moira had been the one to check out emotionally and physically long before she needed to, so being involved with her wasn't especially demanding. The experts at Sloan Kettering in Manhattan, arguably one of the more renowned cancer clinics in the world (not counting my own fabulous team at Augusta's Alfond Cancer Center of course), had told us there was no reason she couldn't live another three productive years, at a minimum. She died three months later simply because she wanted to.

I am, if noting else, a big thinker. And once I start thinking, stopping is never easy. I want to humbly thank you, family, friends and people I don't know yet, for responding so quickly and with such grace, that I wasn't able to fire my big thinker up settling instead for your belief in, and love for, me.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Sunday, October 20, 2013

Under the (cancer) dome

Cancer is a scary word, especially when preceded by “I have.” If I didn't know it before, I certainly did by the time I'd let the people closest to me know I was suffering from multiple myeloma, a rare bone marrow cancer.

 Cancer, it appears, is one of those words that is so big, so scary, that it almost has to be whispered to be heard. “Jim? Yeah he has cancer. To me, personally, there are worse things to be sick from - Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) comes immediately to mind.. But it's cancer I have and cancer that is scaring my friends and family.

I don't want people I care about to be scared around this; heck, I don't want people I don't know yet who may stumble onto this blog to be scared. I realized quickly that having cancer and someone you care about having cancer are two totally different scenarios. When I see people in actual, physical pain trying to find the right thing to say to me, I'm not sure I didn't get the better part of this deal.

See, the thing I know is this: at least to me, there is no right thing to say, no wrong thing. I just want people to be able to say what they feel. Believe me, you expressing your fear isn't going to make me feel any worse, and maybe it could help you; stranger things have happened.

Even if the only thought in your head is “I'm glad it's you and not me that's going through this,” you should go ahead and say it because I would be thinking the same thing in your position. Oh yeah, that should be a guilt-free thought, by the way.

If, on the other hand, you wish you had it instead of me... Well... that's the kind of thinking that keeps psychiatrists busy enough that they can't accept walk-ins.

Sometimes I feel like a character in Stephen King's “Under the Dome.” This “thing,” in my case the multiple myeloma, dropped out of nowhere and cut me off the world in a flash. Everyone is still there. I can see you through the dome's clear walls, as you can see me. . But we aren't really able to communicate. No sound will pass into or out of the dome.

Sure, if we assume we can have poster board and markers, we can make signs for each other and hold them up to the dome wall. But not every exchange of words results in communication. If I ask you what Moby Dick is about and you only have enough room on your sign to answer, “Something about a whale,” words have most assuredly been exchanged, but I'm not sure much communication took place.

Cancer. Here's how ignorant I was on the subject before I got it: I thought you got sick, worked with your doctors, loved your family and you either got better or you didn't. Silly boy. I'm sure it's possible to go through it that way, and good for anyone who can. Since I've been known to complicate a peanut butter and jelly sandwich, though, it's not for me. I spent way too many years avoiding even the hint of the suggestion of the possibility of a feeling and I won't do that anymore.

So, I'm going to continue to find ways to talk to those who care without making them feel worse, and to hear what they honestly have to tell me and use it to help me heal.

The word cancer doesn't hold much fear for me at this early stage of my journey. I live with it, think about it, dance around it 24/7. I don't expect that to remain the case as more is revealed and the extent of my fight is better understood; “Hello darkness my old friend,” in other words. For now though, it just means I have to be careful when talking to others about it. As my friends start to come to grips with it, they don't need me to be seemingly dismissing their fears simply because my familiarity has led to a certain amount of my fear being replaced with contempt for the disease.

Oh, by the way, if there's an easy way to tell someone you have cancer, I didn't find it.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

Wednesday, October 16, 2013

Other children get cancer, Jim Arnold doesn't get cancer

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”

My older daughter, Jennifer, is now 44. From day one at school, she was driven to succeed. The drive didn't come from me. I was, at best, an indifferent student. If I was interested, I did well. If I wasn't, well... C is passing, right? Her mother was certainly a better student than I was, but whatever it was Jennifer had inherited must have skipped a generation.

Anyway, one day, when she was about 6, I came home to find her sitting at the dining room table, a crumpled school paper before her, head in her hands, tears rolling down her heretofore lovely carefree face. It didn't take long to put it together: Jennifer, schoolwork, tears. Oh oh.

What's the matter?”

At 6, she didn't have much of a chin but what she had she definitely stiffened.

I got a C on this paper,” she said, having moved on to the anger phase, tossing the offending document to the floor. As upset as she seemed to be, I did figure that laughing out loud wasn't the supportive response she was going to need. I could not, however, be completely serious.

What happened? You color outside of the lines?”

"This isn't the least bit funny. Other children get Cs. Jennifer Arnold doesn't get Cs.” Honest, she talked like that at 6.

When my primary care physician told me about four weeks ago that the pain in the ribs I was enduring was not, in fact, mild cartilage damage, but, rather, appeared to be a rare form of bone marrow cancer called multiple myeloma, the one crystal clear thought in my head was: “Other children get cancer. Jim Arnold doesn't get cancer.”

Well, a few more tests, including a bone marrow biopsy and, what do you know... Jim Arnold does get cancer. As it turns out, a particularly aggressive strain of a disease that represents only one percent of all cancers. How did I get it? Good question. My oncologist tells me a number of theories have been investigated, but proved to be dead ends. So, how did I get it? The best answer for now is that I picked up one malignant cell from somewhere and it divided to become two, then four and so on and voila! Jim Arnold has multiple myeloma.

How we discovered I had it is a more interesting story, one that has at least a touch of the miraculous to it.

Over Labor Day weekend I decided to move some of bags of desiccated leaves from under our back porch to the garden to decompose. One bag, two bags, and on the third bag... wasp attack. I'm here to tell you that you need to take everything you've heard about how aggressive wasps are in that situation and multiply it by a lot. You swat at them and they come closer. There were dozens and dozens of them, maybe hundreds. I did get into the cellar, which was right there. My wife Sheri counted 27 dead wasp bodies, inside. She also counted my stings- 15.

Needless to say I felt pretty punkie for a while. On the Friday of the following week, the pain in my ribs was really bad, hence my visit to my doctor. He's something of an anachronism these days in that he gives his patients his full attention, answers all your questions, and doesn't let his ego get in the way of his diagnosis. He only knows what he knows and doesn't feel threatened when he has to admit he's not sure.

He ordered a CAT scan to be done that night with the results to be given to him immediately He's so thorough, I didn't think too much of all the urgency. Well, you know the rest I guess- multiple myeloma. The details are boring I think, unless it's your bone marrow that's infected. It causes your marrow to produce way too many proteins which then get into your system which create quite a bit of havoc. It also creates lesions/holes in your bones which is what showed up on the scan.

It is incurable, but most cases respond to treatment and 60 to 80% go into remission with 4 months. We don't really talk about that because my cancer is my cancer and my treatment is my treatment. Sheri and I are travelling this road together and he has told us both to call 24/7 if we have any questions, which is what we've done.

So, the journey begins. I'm hoping for a pony, but prepared to deal with whatever it turns out to be. This blog is to help me. I have always found writing the way to deal with things, be it journaling or writing newspaper columns. I hope you find something in it to help you, but I need to do it anyway.