Thursday, October 30, 2014

What could clowns and Lou Gehrig possibly have in common?

O.K. So guess what I've been doing. Go on. Take a minute. Guess.

Those of you who answered, “Sitting thinking about all my fears” should... Wait. Seriously? Any of you thought that? Why that's... not right. Really. Why on earth would you think that?

Anyway, that's what I was doing. I was thinking about the things that make me fearful. Why? Good question. My answer: Who knows? I suppose the easy answer would be that it's around Halloween, the spookiest, kookiest time of the year. Do I strike you as a spooky, kooky kind of guy? Right.

Besides, I've never been a big fan of Halloween. When I was a kid, growing up in Scotland, our teachers always made us do some of kind of Halloween-themed craft project, usually a lantern. It never mattered much what the theme was, mine always turned into a horrible, terrifying lump of paper strips glued together: “Now, Masterrrr Arrrnold. Do we rrrrreally think that worrrrk is acceptable?” “No teacherrrr.” “Ah should think not.” Arrggghhh. One year we were supposed to make a spider. Hope was high for a while, but my spider ended up looking more like a lantern than any of my lanterns ever did.

But about these fears. I don't know why I started down that (dark and scary, for those of you who are Halloween fans) path. True, fears pop up now and then, but it's usually more of a Whack-a-mole situation: one pops up, you whack it with the mallet, it disappears, then another pops up. But, in this case, I was actually making a list.

Now, just by bringing such a thing up, I realize some of you may have started doing the same thing. Sorry. If you haven't, don't. Facing your fears and thinking about the fears you don't want to face are far from the same thing. Think about bunnies instead.

One revelation I did have, though, was that the fears at this point in my life are considerably different than what I would have listed even a couple of years ago. I mean, I'm still afraid of snakes, and there is still no actual reason for that fear, but I've had it for as long as I can remember. Adam and Eve, maybe? Mind you, on two continents, I have probably seen a total of five snakes in 65 years and each one was scurrying away from me as fast as it could slither (eew).

And clowns. I'm still afraid of clowns. I understand that a lot of clowns are involved in helping others, and most certainly devote a lot of time and energy to entertaining people. I do. I understand that. But, they still creep me out. They're usually so big and energetic. Even so, if they kept their distance, it might be okay. But they insist on getting into my personal space and trying too hard to make me laugh. It's called coulrophobia, by the way, the abnormal fear of clowns. Though says it looks like “the sort of thing idle pseudo-intellectuals invent on the Internet and which every smarty pants takes up thereafter.” Well, the smarty pants thing sounds somewhat familiar.

The fears that I need to confront today are deeper, more emotionally based.

I am afraid of losing any more loved ones. I guess that's always been running as a background script, but now it's very much to the forefront. Obviously, finding out how quickly one can go from thinking you're healthy to having an incurable cancer could do that to you. Linked with that, we had to put our beloved cat Samantha to sleep about a month before I was diagnosed with cancer. That was horrible. If you're a pet lover, you know what I mean. If you aren't, I can't explain it to you. I have actually shed far more tears over that loss than my own illness.

My reaction to this type of loss is, “Fine. I'm just not going to love anyone or anything again!.” You can probably see the obvious flaw in that plan, right? Even if you don't love anyone or anything else, you're still stuck with the loved ones you already have. Damn.

As bad as multiple myeloma may be, I don't think it even makes my top 10 list of diseases I wouldn't ever want to have. Number one, with a bullet as we used to say in the radio biz, is amyotrophic lateral sclerosis. ALS, Lou Gehrig's disease. As I'm sure you know, with ALS your body slowly deteriorates while your mind remains strong and active. My big brain frustrates me enough now. I can't imagine not having someway to periodically dump some of the crap buildup. Alzheimer's disease, multiple sclerosis, muscular dystrophy, polio, and, I'm sure, countless others I've never even heard of, would be higher on my list that multiple myeloma.

Sitting here, writing this, though, my biggest fear is that my multiple myeloma becomes active again before I'm ready. Yeah, I know, you're never ready, but, in some ways, you can be.

That one is pretty situational, though. I have my monthly clinic visit tomorrow, when they do the blood work that will tell us how I'm doing. Initially, I thought that the cancer becoming active again would be a constant fear, hanging over my head like the proverbial Sword of Damocles (whoever he was). It isn't, though. I don't actually think of it very often, but around my checkups it does tend to make a cameo appearance. I'm actually getting much better at letting things be that I have no control over, though.

One positive in this fear list thing is that I realized I no longer have inkafaceaphobia: the abnormal fear of ink from a restaurant paper napkin coming off on your face and having no one tell you about it. Look, we have to deal with our fears where and when we can. Cut me some slack.

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, October 23, 2014

Really. I have got to start paying more attention

My search for a cure for what ails me, stomach subdivision, drifted back to the more conventional side this week as Sheri and I went to a palliative care doctor. You're probably thinking, “A what?” I know, right? Prior to this experience, neither Sheri nor I knew what a palliative care doctor did.
In fact, until my Augusta oncologist suggested earlier this month that I go see one, I had never even heard of such a thing. But one of Sheri's friends had.

“Yes. She said a palliative provides end-of-life care.”

“Well. That's good to... Wait. What?! End-of-when care?”

“End-of-life. She says people normally see a palliative doctor when their illness has brought them close to death and he helps them deal with the pain- physical, mental and spiritual.”

“Well. That certainly seems like the type of thing I would use. Good to know it's available. I just didn't think I needed it now. I thought my oncologist said this new guy would help me deal with the pain in my stomach?”

“Maybe he does that sort of thing too. I'm just telling you what my friend says each time she hears me say you're going to a palliative care specialist.”

Look, I was 98% sure that I was to see this person to help me deal with my pain, but we all know paying attention isn't always one of my strengths. You mix in a large dollop of denial, and there is a chance, small though it may be, that I missed something. Just remember, my doctors and nursing staff told me over and over, from day one, that there was no cure for multiple myeloma, but it was a year before I actually heard them and processed what that meant.

Anyway, we went to the appointment, and once again found ourselves walking the corridors of the hospital, looking for yet another new office (with the help of one of the wonderful volunteers), past places we'd already looked for answers, past many people who seemed worse off than I was, to arrive at the latest location in our search for hope.

As I answered the usual intake questions, Sheri casually inquired what sort of doctor we were seeing.

“Palliative care.”

“Right, but what does a palliative care doctor... do?”

“Oh,” the nice lady doing the intake said, “End-of-life care, physical, mental, spiritual.”

I wish I could leave a large chunk of white space here. It would be the only thing that could adequately convey how we felt when she said that. Eventually...

Me to Sheri: Did you hear the oncologist say anything about end-of-life?

Sheri to me: No. I thought he said this was to help you deal with the pain.

The fact that Sheri was somewhat stunned was disconcerting. She's always the one who has the proper grasp on what's going on.

Me to the nice lady: I thought my oncologist sent me here to deal with my pain?

Nice lady: Well, he does that too. I'm sure that's why you're here.

Whether it was the way she said it, or the way I heard, her answer fell a little short of providing the comfort I'm sure she intended.

Then we met the doctor and the whole end-of-life thing became something we agreed we could make an appointment for in the future, hopefully the distant future, but for now he wanted to talk about my stomach pain. And talk we did.

Just so you know that I am capable of restraint: as part of his questioning, he asked what other specialists I had seen. I told him, but really, really wanted to add that I was going to see a voodoo specialist but I heard you had to bring your own chicken. (Sorry, it never gets old.) But I didn't! I did point out to him, however, that I was seeing him only after I had already seen an acupuncturist and a medical intuitive, so...

That was just me being an ass, by the way. Both those people had helped me a lot, and I'd actually made the appointment to see him before I saw either one of them. But, restraint is relative- you can look it up.

As we talked, Sheri and I felt our hope actually stay with us, rather than fading. While the tests showed that there was nothing physically wrong with my gall bladder, none of them really assessed how my gall bladder was working. In other words, it could be like that car you bought from the local shopper- it looked great, but didn't work so well. He also prescribed a medicine that would help deal with excess stuff (bile? Acid? Don't remember) that could be getting into my stomach.

Or it might be something else entirely. But at least it gives us hope that we might have found the long-sought solution, and in the Arnold house, we eat hope with a spoon.
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, October 16, 2014

It's not how you start, it's how you finish

As Sheri and I considered how to celebrate our 18th wedding anniversary, history was hardly on our side. We rarely celebrate our anniversary or Valentines' Day for that matter. I'd tell you why, but you'd think it was corny and/or I was making it up, so...

We thought about restating our vows, but we wanted it to be private, without even a minister around, so that wasn't going to work. Besides, when it comes to writing those types of things, she's much better than I am and I didn't want to start off our 19th year with a resentment.

Given my recent concern over losing my sense of humor, I probably ought to address the old joke that many of you old joke fans probably have running through your heads right now: A guy is sitting at the bar of his favorite drinking spot and says to his cronies, “Yeah. I probably should be getting home. It's my wedding anniversary.” One of the guys asks, “How many years?” Our guy answers, “It's been nine happy years... Nine out of 23 ain't bad.” Bam!

Anyway, we kicked around some ideas before finally agreeing we should go to the Glimmerglass Opera House in Cooperstown, NY, the scene of our first date.

Now, some things you should know about that first “date.” First of all, we didn't call it a date. We were both 44 years old, which seemed like way too old to each of us to be going on a first date. Also, she and her husband were getting divorced after 26 years while a nine-year relationship I had been in ended about three months earlier. Dating hadn't been on the radar until I happened to get these damned tickets to the damned opera. So, we called it an outing. Yeah, I know, but since the whole thing felt like rearranging the deck chairs on the Titanic, let's just give us a pass on the fact that outing and date, in this case, are the same thing.

The morning of the outing, I tried on almost every shirt/pants combination I owned, some of them twice, looking for the right outfit. I gave up and just settled for what looked the least wrinkled. I subsequently found out that Sheri had done pretty much the same thing.

I wanted to be on time, but not too early because that would make me seem overeager. So, I made the 25-minute drive to her house with 15 minutes to spare. So I went to a nearby drugstore, bought some Tic Tacs and ate the entire box while I killed so much time I was almost late anyway.

I got to her house, knocked on the door which was answered by her daughter Kristie who was headed out on a bike ride. “You be nice to my mother. She's a nervous wreck.” Well so was I, but I didn't know if nervous plus nervous equaled calm or if nervous plus nervous equaled complete disaster. Oh well, too late to worry about that.

Here's another thing you aren't going to believe but it is the God's honest truth. I had only seen Sheri dressed for casual occasions, but she always looked lovely. She came to the door that day dressed to go an... “outing,” and virtually all of my nervousness left me immediately. She was stunning. I mean... whatever comes after incredibly beautiful in the lexicon of beautifulness. One look and I knew there wouldn't be a second date. I mean, it wasn't necessarily the Beauty and the Beast, but it certainly was the Beauty and the What's That Gorgeous Chick Doing with a Guy Who looks Like That? So the pressure was off. There couldn't possibly be a second outing.

Anyway, we got in the car and she noted that my windshield wipers were tied on with two different colors of yarn; one was orange and one was black. Did I mention that Sheri has immaculate taste? Yeah, she does, so it was only normal that she would notice this and ask me about the yarn. “My windshield wipers keep flying off and I don't know how else to keep them on.” “But why is one tied on with orange yarn and the other black.”

I wanted to come up with some cool design concept to explain it, but I figured lying was no way to start a relationship. So, knowing I would lose an inestimable number of style points, I said “When the one flew off I had a piece of orange yarn in the car and when the other one flew off I had a black piece in the car.” Oy.

She was a bit guarded about men touching her, so I had admonished myself all the way over, “Don't touch her. Don't touch.” As I eased the car into reverse to back out of her driveway, I released the clutch too quickly, the car jerked, and I reached out and put my hand on her knee, as we used to do with our kids, pre-seat belts. It seemed like this would actually be a good point at which to stop the outing, especially after she yelled, “Are you out of your mind, touching me like that?!?!?!?”

But God obviously had a plan that even we couldn't screw up, because we made the two-hour drive, loved the opera (“Cosi Fan Tutte”), and spent about three hours sitting on a hill overlooking the opera house, talking about all kinds of things which somehow led to us living happily ever after, or at least happily ever to this point.

The opera house was closed, but we were able to walk all around the grounds and remembering that first outing. How could we possibly know what the next 21 years would bring? I would say we were just as unprepared for the extent of the happiness we would share as we were unprepared for her to develop type one diabetes and need an insulin pump and me to contract multiple myeloma and need a stem cell transplant.

But, I guess, that's the real truth behind happily ever after. You don't ride off into the sunset leaving any possible problems behind to live a silly fairy tale life. No. You join hands, trust and respect each other, face things, good and bad, head on and move through life daring anyone or anything to even think about trying to spoil your happiness.

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, October 9, 2014

About “The Box”... Is outside the new inside?

Got a wang-dang-doodle wrapped in bog snake hide
This goat head gumbo is keeping me alive
I don't want your pity or your fifty-dollar words
I don't share your need to discuss the absurd
Rub Me Raw
Warren Zevon
I guess we don't need any of our new digital devices to tell us that there are bad people in the world, Right? Just for fun I Googled “bad people” and got 26,600,000 results in 0.31 seconds. Impressive, wouldn't you say?

I guess for my purposes, I'm interested in the bad people sub-category- “Taking advantage of people who have serious illnesses.” No need to use Google this time. I know there are people who prey on the sick: on the young and the old; the poor and the not-so-poor; the hopeless and the hopeful. Without doing even so much as my usual shoddy research, I'm quite sure that the common denominator in all of this would be that the sufferers are all desperate.

I don't think any of us would put these bad people in the dumb category. Au contraire, mon ami. The best of them know exactly when to make that phone call; write that letter; send that email. I'm sure you've experienced it yourself. When you're first ill, you have all sorts of options, most of them readily dispensed by your family doctor, or any of the specialists to whom he may refer you.

But as the illness gets worse, and the number of solutions dwindle, possible cures we considered ridiculous initially, now move over into the “Let's give it a try, what could it hurt, folder.” Take something as innocuous as the hiccups. “Sure, you can try to give me a sudden scare. But, I'll be darned if I'm going to drink my beverage from the opposite side of the glass.” Continue to hiccup, though, and pretty soon the front of your shirt is liable to be soaking wet.

When I was first diagnosed with cancer, I quickly drew the proverbial line in the proverbial sand. I'll do this, but I won't do that. For example, I'll consider alternative medicine solutions, but I won't try, say...voodoo, Because, as I understand it, you now have to bring your own chicken.

Anyway, these low lifes go around bilking people out of their hard-earned savings, while simultaneously giving them hope, the one thing they need so desperately. The fact that the hope is as fraudulent as their so- called solutions, raises category of their crimes from despicable to heinous. The best mentor I've ever had once told me, in answer to a question: “Sure. I believe in God. If I don't, none of this makes any sense.” So, the one thing we can all be sure of is that, if there is a heaven and/or hell, these people will be given trials that make Sisyphus's task of rolling a boulder uphill as ordered, only to have it roll back down... Well, let's just say that before the first day is over, they'll be begging for their own boulder and hill.

One of the bothersome side issues these people and their false treatments, their false hope, bring is that it can make us leery of some possibly beneficial alternative treatments that are considered by some to be a little outside the box.

In my case, I've been looking at non-traditional treatments for this constant stomach pain I have. My oncologists, as well as a variety of specialists, close to numbering double digits, have been unable to come up with a solution. Ironically, they have, if I may call upon the vernacular at this point, creamed my multiple myeloma. My blood work continues to look great, and the myeloma is hiding in my system somewhere, licking its wounds. But this stomach pain... I didn't hesitate to go to an acupuncturist because my wife and a number of friends have benefited from acupuncture. But when she conceded that she wasn't going to be able to help me, and recommended a medical intuitive, it gave me pause.

As a result of these Sisyphus gonna-be's, I needed to really look at that concern over fraud versus the recommendation of a woman who had done her best to help me, and admitted defeat quickly, only so that I could move on to give someone else a chance to help. It should have been a no brainer- someone I trusted versus the scum of the earth, with apologies to the actual scum.

And it ultimately was an easy decision. Sheri and I drove 50 gorgeous New England fall miles to be treated by this woman. The methods she used were certainly out-of-the-box. I won't describe them here because “You really had to be there.” Was it touchy-feely and New Age? You betcha. Was the woman wonderful? Yes. And kind, and caring, and loving. Did it work? Don't know yet.

The whole process gave me another chance to thank God and my friends and family for helping to make me the type of person who would be willing to try something unusual, rather than just sit, wring my hands, and feel sorry for myself. Other options remain, mostly back towards the more conventional side of things. However, there's nothing stopping me from checking out the best place to buy a live chicken, just in case.. you know. It rhymes with who do.

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, October 2, 2014

George Bailey should have just paid more attention

You ever feel like George Bailey had it right the first time? (Before the stupid angel wanna-be butted his nose in.) The world would have been a better place without you. Or worse yet, you'd have been better off if you were never in the world.

I certainly have. We live in a tough old world, brothers and sisters, and if you get your butt kicked enough days in a row, you wouldn't be human, I don't think, if you didn't want to pull a George Bailey at least once in your life. Look, I think there are plenty of days when the bravest thing we do is to get up in the morning. For me, those are the days when I run through my morning checklist and realize there isn't a single thing on it that makes me think it could possibly be a good day. And I get up anyway.

I mean, that's what I've always done. I got up, when I was seven and knew the school bully was going to beat the crap out of me, just because he could. I did it a lot in high school, maybe because I hadn't read the book and handed in a report based on the movie, hoping to God that the two were close to the same. Or it could have been that I hadn't studied for a test on something I didn't understand anyway. Or when I extended my own school record for consecutive days without having a girl acknowledge my existence. And in a related example, I also got out of bed when I realized my only chance of getting a date was if I ran into a girl who was conducting some sort of social experiment to see if it truly was possible to make someone die of embarrassment.

And I don't think you have to have to have a terrible illness, or a broken heart, or any other “big” reason to feel George Bailey-bad; you just have to be a living, breathing human being, just trying to get by.

But brothers and sisters, life can also be wonderful. Maybe just for a few minutes, but maybe for hours, days, weeks... who knows. But I've become curious about how that's going to happen. I have no idea what terrific thing might happen today to make the past period of misery not even worth considering.

I'm not gonna lie. In mid-September I was about as done as a twice-baked potato. I kept going, as always, but in my mind somewhere was the thought that this would be the time something terrific wouldn't happen, and then what?

Well, then I experienced the following extraordinary sequence of events.

First, I got a phone call from arguably the best male friend I've ever had. We had not been in touch for 23 years. Yeah. Nada. No in touch. Turns out we'd both made attempts to find each other over the years, but this time he couldn't get over the feeling that he really needed to find me.

He now lives in Idaho, and the last he knew I lived in New York. He remembered, after all this time, that our daughter Alison's name was spelled with one “l” and that led him to her which led him to me.

We had always had a different kind of connection, more than close really. How did we drift apart? Don't know; we just did. But as we talked, it seemed like my getting cancer was somehow the driving force behind his not giving up this time.

Then, rather incredibly, a couple of days after we talked, he had a biopsy done on a mole and found out he has basal cell carcinoma. He seems okay with it and it does seem very treatable, quite curable. Still...

While continuing to reel from that shock, I checked my voice mail one day to find a message from my sister. Now, I won't bore you with the details of why I would have been less surprised to receive a message from my other sister, who passed away six years ago... Suffice to say I was stunned.

Here is how surprising it was. Sheri, one of the best people I know, heard me listen to a message but didn't know what it was about. I told her it was from someone pretending to be my sister, and she didn't tell me that I wasn't being very nice, which would be her usual reaction. She merely laughed, thinking it had been a wrong number and I was just trying to be amusing. When she heard me call my sister back, and it became obvious who I was talking to, she joined the ranks of the stunned.

I had called my sister when I went into the hospital at the end of April, and hadn't heard from her since. That was fine. That was normal. We used to go years without talking to each other. Truly. Years. But, this calling to find out how I'm doing... I don't know about that.

Still a bit wobbly after all that, I talked to my daughter Jennifer. Among other things, she told me she had heard from her college roommate who worked for a drug company that was working on a cure for multiple myeloma. So now we not only know that “they” are working on a cure, but someone we know is working for “They.”

That would have been a lot to miss and that is why I get out of bed every day, sometimes twice, if I take a nap: to endure the bad long enough for the good to arrive, because the good is usually terrific and the bad fades quickly.

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.”