Wednesday, June 24, 2015

Read this at your own risk

Spoiler alert: This column is a lighthearted look at talking about death and the fact that we're all going to die. I can see you beginning to chuckle in anticipation. But, just so you know. If that sort of thing bothers you, I wouldn't read it. If you're not sure, and go ahead and read it, don't bitch at me if you don't see the lightheartedness in it. I think it's funny, but, we all know how I am.

My friend Walter (not his real name) and I were sitting having our usual Tuesday morning coffee and donut, talking, as we do, about all manner of things. I was going to use his real name, but he might not want to be associated with me. I mean, we were sitting in a secluded corner of the coffee shop after all and he did have a scarf covering his face. I made up the scarf part, still...

I like talking to Walter because he is, as they say up in these here parts, wicked smaht. Not the least sign of his smahtness is he married a wicked smaht woman. But that's probably a topic for another day, or one to be discussed in private because being understood when I talk about my own wife is difficult enough. I don't need to be misunderstood talking about anyone else's.

Anyway... Before I go on. Let me tell you how much I like and respect this not-his-real-name guy. He had something bad happen to one of his eyes which caused him to have double vision, since cured (which might render the whole NHRN ploy as pointless). Not the kind where stuff is somewhat blurred and you sort of see two of everything. Nah, he actually saw two of everything. To compensate- and this is where showing my like and respect for him come in- he had to wear an eye patch, which was often black in color. Not once, not once, did I say “Aaaaar matey” in his presence. I know. It says a lot doesn't it? I did refer to him as Cyclops, but only once and he wasn't being very nice at the time.

But, back to the point. We were having our usual Tuesday morning coffee and donut and talking about stuff and the topic, naturally, turned to the fact that we were going to die, as was everyone we knew. Well, maybe naturally isn't the proper designation for the turn in the conversation, but still... We were talking about death as if we were talking about anything else. That is, kinda casually. Not, I guess, “death as the end of all things and oh the horror,” but, more like, “We're all going to die sometime and how come people so rarely talk about it?”

Of course, we do talk about it. We know we're all going to die sometime, maybe in the next five minutes, and I guess, someplace within ourselves, we know and believe that. But how many of us act like we could be dead in the next five minutes? Yeah. I don't see a lot of hands raised.

Sure, we all have said at some point, “I know life is precious and could end at any time. Hell, I could walk out of here and get hit by a bus,” but wouldn't we act differently if we really believed that? I don't know about you, but I don't really believe I'm going to get hit by a bus any time soon, and not just because there aren't actually any buses around here. It's just... well, that sort of thing happens to “the other guy" (not his real name either).

Well, me and Walter were saying how we were pretty much okay with it. We're both of an age, closer to 70 than 60, that likely puts it closer to the forefront of our brains than the backfront. Also, I suffer from... you know what, and he knows that I have it, so we bring that to the discussion.

He has an amazing analogy, though, addressing the fact that we're all aware that death is in the future, but don't really recognize the fact. “It's like all of humanity is on a train going ass over tea kettle (my choice of expression, not his) towards the edge of a cliff, with plummeting from said cliff obviously the endgame. And an announcement comes over the loudspeaker: “Attention all passengers. We are racing to our doom at an ass over tea kettle rate of speed. Please plan accordingly” And everyone hears the announcement, but doesn't really react. Oh, one of us might say, “Could you pass me another one of those little sandwiches with the crusts cut off?”, or “I just read this amazing article in the paper,” or “Did you see the Real Housewives of (Wherever) last night? Isn't that one a bitch?” But we don't all get crazy like one of those old Irwin Allen disaster movies and start looking for a way out. At most, one of us might remark, “Hey. Did that guy just say something about ass over tea kettle? Oh, well. What's on TV tonight?”

Now, I told you all that to tell you this. As we were pretty much winding up our conversation the man who had been sitting at the next table having his own refreshments, stood and moved closer to us.

“I have to tell the two of you,” unknown man said, “it is very refreshing to hear two adult men talking about death the way you two just were. I mean it. We should all talk about it like that, but almost no one does. I don't know why that is. But it certainly is the case. Thanks again.”

And with that, he was gone. As you know, things like this happen to me quite often but I think not-his-real-name Walter was taken a bit by surprise, but in a good way The man didn't say anything about listening in on our conversation, which was fine, we weren't making any effort to be quiet. I think if we were all more open to talking to each other like that, to thanking people we don't know for things that they say in public... I think the subsequent verbal possibilities would make leaving the house in the morning more fun.

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, June 18, 2015

The grandson also rises

Well, our oldest grandchild graduated from high school this week. Hooray for Jacob!

Not that there was ever any doubt. Both his parents graduated summa cum laude from college, so even as this particular grandfather graduated laude how cum, good grades were Jacob's birthright.

With our grandchildren all living so far away, it's hard to get to know them all that well. Since social media has come along it has become marginally easier, but there's nothing like going to grandma's house for cookies, or to be babysat, or all those other grandparenty things that we would have done if we lived closer.

But, I suppose that's to your benefit because this isn't going to be one of those columns about how great my grandchildren are and, by inference, how much better than yours they might be. All I know is that they're good kids, but I assume your grandkids are too. In fact, they're probably the best in their row at everything. Good for you. Well done. Nice gene work, people.

When I had first started working for my friend Dick Manville, whom I've written about before, we would spend hours over light tables laying out newspapers. This was in the days where you used gridded layout sheets, type on film, wax and scissors. You were on your feet for quite a few hours at a time, and, depending on where you were in the process, you had time to talk. Very early on, Dick said to me- and I don't remember why- “Don't talk to me about your kids and I won't talk to you about mine.”

Since I still had some respect for authority at that time, and he was my boss, that's what we did. As time passed, we eased up on the rule, but mostly because our kids went from achievements like coloring inside the lines to graduating from high school.

So fear not. I'll keep my pride to myself... at least for now.

We were unable to attend Jacob's graduation. His family lives in southwestern Pennsylvania, so far south, in fact, that you have to go through parts of New Jersey, Delaware, and even a slice of Maryland, to get there. My daughter and Sheri and I decided that Jennifer should give the available tickets to family that was more local, since there was no guarantee that we would be able to go.

Still, the family decided to have a post-graduation party for Jacob the Saturday after his actual graduation. We thought we could make the trip if we didn't have to rush and there was no pressure to arrive at a certain time. But we were wrong.

My health would just not accommodate us. As much as we wanted to see Jacob and his family, and hand out plenty of post graduation hugs, my multiple myeloma and attendant issues cried foul. No party for you, buddy!

So, that sucked and we had to call and tell first his mom and then Jacob that we wouldn't be able to be there. His mom cried, sorry about us not being able to be at the party, with a side worry about my overall health. Jacob accepted it, knowing it had been a long shot anyway. Still, it made me mad that cancer could do something like that to us. Bad enough that it can make living difficult on a daily basis, sometimes, but to keep us from family moments like that... If cancer was a person, you'd want to take it outside and, in my case, have someone strong beat it up for you.

On the other side of the cancer coin, though, was the fact that I'm here to see Jacob graduate. When we first received the diagnosis, a whole list of things popped into my head, along with the question of whether or not I would be alive to see them. There were five children to graduate from high school and/or college, there are weddings to be had, babies to be born, another Christmas... how much of all that was I going to be a part of? The answer has morphed from not many, to no idea, to probably quite a few.

All these things fall into the same category: who says we would be alive to see these things, cancer or no? True enough. Still, it was a good feeling to check the first one off the list. The celebration wasn't what we would have had it be, but it was a celebration nonetheless: the start of his new life and the next step in mine.

One thing I do want to tell about Jacob. It's not bragging, in fact, it's probably odd, so it's okay to mention, even with my convoluted rules. When he was less than a year old, Sheri and I found out that the one guaranteed, and I mean guaranteed, way to get baby Jacob to stop fussing was to sing Talking Heads “Psycho Killer” to him, usually while poking his tummy in time to the music: Psycho Killer,
Qu'est-ce que c'est, fa fa fa fa fa fa fa fa fa far better.
Run run run run run run run away It loses a lot if you don't know the tune I suppose, but that baby boy would stop fussing and start grinning immediately.

Congratulations baby Jacob from Grandma and Grandpa.

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, June 11, 2015

Yes. But that's not what I meant

Here's a question for you. Many of you continue to tell me what a good writer you think I am. And I appreciate that. Writing is a solitary act, so encouragement is a good thing. But do truly “good” writers have to begin so much of their work by having to further explain something they had written previously? They don't, do they? Poe never had to say, for example, “Now. About that Raven thing...”

Still, here I am again this week, after 101 blogs, saying, “There seemed to be quite a few people who were upset by my column last week, and in particular about what I had to say about dying with cancer rather than living with it. Let me explain...”

Brothers and sisters, I swear I knew exactly what I meant when I said that, but upon re-reading it after the concerns some of you had started to surface, I can easily see why you would wonder what the heck I was thinking.

The thought seems to go against the very core of what I believe, what I have been espousing in my writing. I continue to face my cancer on a daily basis and don't back away from the challenges. I am not sitting morosely pondering my demise, far from it.

But I am human. I have just gone through a period that I would call crappy, but I don't use words like crappy, so I have to come up with something else. In the past three or so weeks, I have spent more time feeling sick, tired, and discouraged than the rest of my time with cancer put together. I was lost, is what I was... Completely lost, with little idea of how to find my way back to expressing how I truly feel as we near the second anniversary of my diagnosis.

Add to that another issue with last week's remarks about dying with cancer rather than living with it... I forgot about one of the important factors I must- absolutely must- remember when I am writing or talking about cancer in general, but more important, about MY cancer. It's a hard and fast rule. Well, maybe not a rule, more of a guideline. Yeah. Guideline. Definitely just as suggestion.

Sheri and I, and to a certain extent my family, live with my cancer day in and day out. We can't get away from it. We try, and, we succeed more often than not. We have wonderful times together despite the fact that I have cancer.

But because we are never far away from knowing I have it, I tend to forget that cancer remains a scary word to a lot of people. I can't think of any health issue that has touched so many people. And when people have cancer, and they're people we love, we see pain and fear and sadness, but, if we're lucky, eventually we see happiness as the cancer loses its fight and some of its bite, for that matter.

So, I try to remind myself, constantly, that I can't talk about having cancer in any sort of casual manner. That I can't introduce the subject of death without clearly stipulating just exactly what it means to me... right now...while I'm writing about it THIS TIME.

And that, brothers and sisters, is what I did last week. I forgot that cancer and dying are big words, big concepts and can't just be dropped into a conversation, otherwise you end up spending another column trying to explain yourself.

So, to review. I remain optimistic in this struggle with multiple myeloma and will continue to poke the disease in the eye whenever I can. To that end, we have actually made a major change to how I am fighting this good fight.

Since my step cell transplant, I have been taking a maintenance dose of an oral chemotherapy drug. Both my oncologists left it to me to decide whether I wanted to do this or not. Since it seemed like one of the few active alternatives, I told them I wanted to try it.

The problem is that I have been so sick and so tired that I've really had to look at what's up with that? We have agreed I'll drop it from my regimen until my next monthly check up and see what happens. The “what happens” can be a little disconcerting, since it could, conceivably, mean the myeloma becomes active again. Our hand has been forced somewhat, though, because of the constant nausea and fatigue.

So... “what happens” it is. Obviously, you'll know as I know since I keep you aware of what's happening, even though it may take more than one whack to get the message across! Thanks for sticking with 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

Thursday, June 4, 2015

'Finding the Pony' turns 100... and one

Last week's column was the 100th blog on my journey through cancer. In this case, 100 seems like a lot. Yes, there are plenty of others who have written much more. Remember Dear Abby? How many do you suppose her, or her sister Ann Landers, did. Different formats, true, but thousands would seem to be the answer and thousands is a lot.

I have never been a prolific writer. I have always tended to write in fits and starts. Whether it's starting a short story, or a book, or even other attempts at columns... My output has always been rather limited.

In this case, though, I've been pretty thorough. As I've mentioned here what must seem like countless times, somewhere along the way, many people have come to depend on me for a weekly dose... of whatever it is they get from this. That sentence calls out for a cheap joke. But I'm running a little low on them.

Truth is I'm running low on a lot of things. If some of you have been working on collecting the whole set of “Finding the Pony” through the Kennebec Journal and/or the Morning Sentinel, you'll find yourself a little short. Not all my blogs have been published in the papers, though far and away the majority have. There is also the variance in my own output.

When I started, there were weeks I wrote a couple of columns as things happened too fast around my cancer treatment for one blog to give me the relief writing brings me. There may even have been a couple of weeks when there were three.

The numbers, and what was going on with my treatment at the time, don't tell the whole story of my heady output. The protocol for treating my multiple myeloma, prior to my stem cell transplant, included a dose of chemotherapy, taken in capsule form; an IV dose of Velcade, a targeted therapy approved for use in treating multiple myeloma; and steroids... lots and lots of steroids.

Steroids, though actually an important part of my care at the time, also made me manic on a scale comparable to... let's say... oh... The Tasmanian Devil in Warner Brother cartoons. They gave me extra energy, made it impossible to stop talking, and left sleeping as nothing but a pleasant memory.

So, just taking steroids would have given me extra waking hours and available energy to write plenty of columns. But the thing is... On top of that, in the beginning I misunderstood the directions on the bottle of steroids. Judging by the oh-so-many people who showed me the label and directions written, as they so kindly noted, in little words even a child could follow, it should have been ABUNDANTLY clear I was to take them once a week, not once a day.

I saw more than my share of sunrises during this time, since I was consistently still awake when the sun came up. My writing output showed considerable volume, but it also showed a considerable amount of “Forty Monkeys Given Typewriters; Produce 'Hamlet,'” with similar results. For each “There's something rotten in the state of Denmark,” there waaaaay many more “Tjslkdjf jso pppdfa jhnsasm””s.

Anyway, did I have any idea how many people would respond to my writing about my journey through cancer? No. Did I have any idea the impact it would have on people? No. Did I know people would send me stuff in the mail? No, but that was cool.

In truth, I didn't know if the number of blogs would even get into double digits, either because of my heretofore shaky output, or my losing the fight in the very early rounds.

In the beginning, the writing didn't come too hard, really, because I was able to address multiple myeloma/cancer stuff, medical stuff and technical bits of what was going on around me.

Still, it wasn't long before I realized that I was going to end up revealing a lot more about me and my feelings than I had originally intended. And that was because of you, brothers and sisters, because of you. You had so many kind words and offered so many thanks for my being able to ease your fears, or help you deal with a loved one being sick. What was I supposed to do but keep writing?

Same with Sheri too. As I wrote about what she had to live through on a daily basis, caring for someone she loved living with cancer- the second time she had had to do so. Her son Jason suffered from neuroblastoma twice before he was four years old (He's now 37)- you told us it helped so many of you deal with the same challenges in your lives.

And then, somewhere along the way, I realized I was actually writing about dying from cancer, not living with it. Doesn't that strike you as odd? It does me. Multiple myeloma is incurable and it kills people. So, though on the surface, I was writing about living with all that, in my heart I was obviously preparing for the opposite. Wow.

Still, here I am still standing, still writing, still waiting for Godot. I made that last bit up. I am waiting to see what happens next, though, and I hope to be able to share it with you, whatever it may be.

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.