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 clich├ęs 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... well...you 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.