Thursday, November 26, 2015

How many words is a picture worth, exactly?

“I think we should take that photo down,” Sheri called from some unidentified part of the house the other day. “I think it's time.”

I wasn't sure where she was calling from, and I probably should have wondered, “What photo?,” but I knew. It had been on our fridge door- the only thing on our fridge door except for the “We can fight cancer together” magnet that held it in place- since a couple of weeks after I got home from having my stem cell transplant; so, let's say it had been there since early June 2014.

Truth is, that since it had been in the same spot without really being moved in all that time, it had pretty much disappeared from my view. It was there. I knew it was there. I knew what it was. I looked at it, but I no longer saw it. Know what I mean?

It was a photo Sheri had taken in my hospital room during my recovery from the aforementioned transplant. I was standing (in itself a photo-worthy event at that point in time), leaning against my IV pole. I looked... unkempt... bedraggled... sadly cheerful. I'm not a big smiler for photos at the best of times and this was hardly that..

My hair had begun falling out and what was left presented itself in clumps. I wouldn't say I looked like “Alfalfa” from the Little Rascals, but I could have been taken for blood kin. There were five or six bags of fluids hanging from the IV pole, in various stages of distribution. Since I had a Hickman line, I was never quite sure what was going in at any given point, but the number of bags looked impressive. There may have been a day when I had one more, but I don't really think so. This was a... highlight?... low light?... sad moment?... hopeful point? Probably all of those. It certainly was dramatic, even if I, myself, looked at least a little lost and overwhelmed.

We put it on the fridge as a reminder of where we had been; that as the recovery process dragged on, at least we weren't... there.

So, sure enough; that was the photo and down it came. It went into a box along with numerous other reminders of moments of our transplant process: the first day visit to the cancer clinic here at home; traveling to Boston for the transplant; my room in the hospital; various shots of me not sleeping; the transplant itself where the blood was being IV'd back into my system; the slow steady climb of my white blood cell count till it reached the point we could go home; and on and on.

These things aren't in a box in a closet to be forgotten, obviously. It's sort of the same thing I do with my brain. I can't have all those bits and pieces pinned to the front of my brain where I have to deal with them every day- there lurks madness (haha). No, they're there... Well, I can't say carefully filed away because, yes, they are in one basic location, but, if you think of it as a file cabinet... some are on top waiting to be put away, some are on the floor where they fell. It's untidy, but they are somewhat put away. So this one went on the pile.

The magnet is still there, but right now it isn't holding anything. You might wonder if there was any emotion to putting the last visible trace of my experience out of sight and I would have to say, “Not really.” Or, at least, “I don't think so.” It was time. Simple as that really.

Interestingly enough we made a truly significant change to my treatment this past week as well. Since a few months before the transplant, and just about every month since, I've been receiving a once-a-month treatment with an IV fluid designed to repair damage to my bones cased by multiple myeloma.

When I was meeting with my oncologist prior to this month's treatment, we were talking, again, about my stomach issues. They have always bothered him because he is a conscientious person and doesn't like to see one of his favorite patients in pain, being unable to do anything about it. (Actually, I don't know if I'm one of his favorites, but, for dramatic effect, I'm going to claim that status, earned or not.)

As we talked, he wondered if it might be this bone fixing chemical that lurks at the heart of my stomach issues. It can cause those symptoms, evidently, and as he did some quick research while I was there, we decided it would be well worth stopping the treatment for at least a month to see what happened. We have tried so many other things, I couldn't see any reason why not.

So, two constants of my post-cell plant treatment changed this week. One put the transplant experience one step deeper into my memory, while the other opened a door to perhaps getting rid of this lingering pain that is severely affecting my quality of life.

All in all, I'd say that's quite a week. Stay tuned.

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, November 19, 2015

Finding the write stuff

A woman I know asked me an interesting question the other day, a question I had, in fact, been considering myself.

“How will you know when to stop writing?” she asked. That's not the exact question- memory lack and all that- but the gist is the same. If I'm writing about my journey through cancer, how will I know when to stop, since it appears that the journey is going to be longer than I initially thought.

When I first started, right after I was diagnosed with multiple myeloma, I began writing as a way to cope with the uncopeable. There was no way for me to cope with having in incurable form of cancer; one I'd never heard of at that.

So, I started writing about what was going on. The things I was discovering about my illness, the steps we could take to combat it, and what the cancer would do to damage my health. It's hard to admit now, but I really didn't expect to be writing for that long a time. In the beginning, it all seemed a bit bleak. There was no prognosis, which was how we wanted it, since it would have been little more than an educated guess anyway. And that was fine, but it meant we didn't know if I would have months or years to live.

I soon came to realize, though, that a journey through cancer, living with cancer, is a lot more than doctor's reports, medicines taken, procedures followed. It also means living the other parts of your life, with cancer as a mostly constant companion. I am a husband, who has cancer. I am a dad, who has cancer. A friend, a former co-worker, someone you don't especially care for... with cancer.

If I was truly going to live with cancer, and journey through having cancer, I was going to have to find ways to keep it right-sized. It couldn't become the sum total of who I am or the person I hope to become. I wasn't going to be able to toss it onto the rubbish heap at the back of my mind and leave it there; every day was recycling day.

Writing about it, and sharing some of all that with you became more important, really, than the day-to-day medical bits. Yes, there was my stem cell transplant to write about, and these stomach issues, which I continue to have. But there was the challenge of getting by, day by day, with what could have been a medical Sword of Damocles hanging over my head.

Well, then you began talking to me, writing to me, letting me know what you thought about what I was going through and how you saw me doing it. So many people told me my writing and my observations gave you hope; helped you maintain perspective on the things in your own life that seemed uncopeable. Brothers and sisters, I didn't really see that coming.

I had thought that by sharing how I felt about things, big and little, connected to my disease, I might be able to express feelings that others had, but weren't able to talk about or, perhaps, even get a good grasp on. I wanted to be able to help others by expressing for them what they could not express for themselves.

What I didn't expect, was the depth and breadth of people's feelings about me, my wife Sheri, my family and what we are going through. At times, the reaction seemed like too much. Honestly? I'm just a guy who can string some words together and doesn't mind sharing deep feelings with other people, most of whom I do not, nor will I ever, know. To me, there's nothing special about that.

In answer, then, to the initial question, the guy I was could stop writing whenever it wasn't enjoyable anymore. When the main topics were covered, and so many words had been shared about so many different feelings and events... he could just stop. Maybe to resume if the cancer flares up again, but maybe not. Hard to know.

But, I feel like that guy is a goner. Simply put, too many people have told me that they and many of their friends look forward to reading what I have to offer, talking about it, and being cheered by it. As I so often do, I hope that doesn't sound like ego because it certainly doesn't feel like ego. It feels like a real responsibility. A big one.

So, when will I know to stop writing? Well, not today. Also, as long as one person, forced to deal with their fears in the wee hours of the morning, finds any comfort or solace in what I have to say... well, again, it won't be that day either.

I feel as though we are in this together. I gain comfort from what you have to tell me, and, evidently, you gain comfort in return. So, I will try not to write beyond the time I have comfort to offer or something I think can help me or you get through another day. Promise.

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 11, 2015

I think my high school yearbook got it wrong

It would seem I have become a curmudgeon. This brings me neither shame nor pride at this point in my life, it simply seems to be a fact.

It has never been a goal. In my high school yearbook (Roosevelt High School, Yonkers, N.Y., 1966 L'Envoi), under my senior picture, it does not say, “Longs to be a curmudgeon by the time he's in his middle sixties. Would settle for grouch, but aims for loftier heights.”

Under that picture, though, it did say something about the red hot flair for writing. That was amazing in and of itself, since I had written maybe two stories for our school newspaper, The Crimson Echo, both of which I remember as being pretty rotten. One, I recall, was a story about a Roosevelt Indians (Indians! Yikes!!) football game that I wrote in the fall of 1965 with access to neither a roster nor any real idea of how American football worked. I'm sure there was no lack of enthusiasm, but I doubt that even people who were at the game gained any sense from it.

Having realized this curmudgeon status, I must also say that I believe the heyday of the curmudgeon has passed. Work with me, brothers and sisters. As a kid, wasn't there someone on your street everybody called old Mr. or Mrs. (Fill in the blank). It was the person who left their lights off on Halloween. Yelled at you if you went on to their property to retrieve an errant toy. And if you employed that time-honored manner of getting even- ringing the doorbell and running away- they did indeed call your parents if they saw you disappear from view.

Now, though, things have changed so much that someone like that would be reported to the police the first time they yelled at a kid on their lawn. And probably rightfully so. But at a time when people working with youth are routinely being found out to be predators, I'm not sure we haven't lost the thread somehow.

Anyway, regardless of what else it means, I am a curmudgeon with a thick skin and a chewy center made up of annoyances, short-temperedness, perceived slights and no real arena in which to display my curmudgeonly ways. Back in the day, we virtually all lived in some kind of neighborhood that had a definable beginning and end. So a curmudgeon could be old Mr. Wilson down the block, or maybe Old Mrs. Hart, who didn't seem to have one, from around the corner.

I get less sense of neighborhoods now, especially when we can all get in contact with anyone in the world without leaving our house; play games with others in any country we chose.

But, this isn't one of those, “Why in my day...” sorts of things. I'm just thinking this out and realizing I'm a curmudgeon out of time. This has nothing to do with my having cancer, by the way. Or at least, I don't think it does. Then again. it may be exactly because I have an incurable form of cancer. I don't know. Is it the constant stomach pain? Another good question. Again, I don't think so, but I'm coming to realize that chronic conditions can have an overwhelming effect on a person and their peace of mind.

I can't even point to an increase in the number of people who seem to find me cranky or crankier than usual. No one is saying anything. But, then, riddle me this... why do I find almost every living creature on God's green earth annoying? Very annoying. Of course, I don't mean you. I mean everyone else.

And, if I'm being truthful, I think everyone is probably a bit of an overstatement. My children and Sheri are exceptions, though they do ruffle my kerfuffle at times, but usually with reason. The general curmudgeonness, though, comes from nowhere. You can't do anything to not annoy me. It''s...Well, for example... all that breathing- in and out, in and out. You need to stop that. It annoys people. Yeah, so you're thinking, “How can any human being say that about another?” It's easy.

These are the types of things, though, that cause Good Jim and Curmudgeon Jim to battle: GJ- You can't say that; CJ- Sure I can; GJ- No you can't; CJ- Sure I can; GJ- Well you can't act like you mean it; CJ- Watch me.

When I'm in this state, like now, every interaction with another person, at least in my head, begins with, “Shut up. Just... Shut up.” But, I keep that to myself so people will not know whether that's what I'm thinking or if I'm actually thinking something nice, or not thinking at all. It's better than opening my mouth and removing all doubt.

My being a curmudgeon is actually like my multiple myeloma. At this point it's incurable, but it is treatable. I'll always have multiple myeloma, and, as it appears now, I'll always be curmudgeonly. But, I don't always have to act out. I can be a curmudgeon in remission.

Or as my kids used to sometimes say about the curmudgeon on our street when they were growing up: “Mr. Marshall must be having a good day today. He yelled at us to get off his lawn, but he didn't throw anything and he didn't threaten to call you, dad.”

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 4, 2015

It's my obituary and I'll cry if I want to

It's 4:30 in the morning and I've been running some ideas for this week's piece through my head. I just realized it was shaping up as something of a companion piece to last week's where I mentioned things I didn't want to have to write about.

Now I'm moving through my mind ideas that I DO NOT want to see in my obituary. Oh. Feel free to enter your outrage here. Go ahead. Take a few minutes. “What kind of pompous ass thinks we'd even care.” “Controlling to the end, huh Arnold?” “Are you TRYING to make people feel uncomfortable, or is that just a side effect of your free range ego?”

OK. My turn. First off, it's now 5 am. You really think this is the time of night when fairy dust fills the air and you just have to walk through said mist to pick up a positive thought?!?! After two years-plus of dealing with my health, my cancer continues to be taking a beating. Yay! After over a year, my stomach problems have me right back where I was when the issue started, over a year ago. Boo!

The latest anti-nausea medicine I was given has been pretty effective at it's given task. My general crappy feeling has diminished some, but it has been replaced by an overwhelming anxiety and difficulty sleeping that takes me back to the early days, early morning hours, of having cancer, where I was thinking about copying over “War and Peace” in pencil just to reduce the amount of excess energy that was whanging against the inside of my head.

So, here I am in my pjs, if you can call sweat pants and sweat shirt pjs, thinking about my funeral... again. It is probably getting harder and harder to convince you that this is not a negative run of thoughts. But it's not. We don't lie to each other, remember. It's just how my mind works and what, frankly, makes me laugh. Ha! Ha??

First off, he said maybe getting to the point, if you write about/speak of me after I'm... you know... “gone,” please don't refer to his “brave fight,” “courageous battle” or like that.

Wait a minute. You know what... Do/Say what you want. It's very poor form, as we used to say in the snooty school I went to in Scotland, to be telling you what to do... ever, even about my own... you know.

But, here's the thing. I don't want people to say things like that because, simply put, they aren't true. There's nothing brave or courageous in what I'm doing. I'm just picking and scratching and thanking God every day for putting the former Sheri Martin (not her real name when I met her. Well, Sheri was, though, officially, it was Cheryl. She did later change it to Sheri, legally. It was never Martin, though. And as long as we seem to be off the point again... When you get married for a second, or subsequent time, and take your spouse's surname, are you still technically giving up your maiden name? It seems unlikely, right? Oh how my mind does wander...) in my life to fight along with me.

Back to the postmortem ...Don't put anything about being a great husband. Right now, I'm doing a pretty good job, I think, but I doubt that my first wife would say how great I was.

I'm an okay dad. Maybe a bit better than okay, but just a bit. I love my kids, including step kids Jason and Kristie. (I hate the term step kids, by the way. It makes them sound like less than. Truth is, they just haven't been my kids for as long; but it doesn't change how much love I have for them.)

I'm a horrible grandfather. Horrible. You think I'm overstating it? Ask me how old they are? I have to add -ish to the number of years... eight-ish, 14-ish and so on. I do have a firm grasp on the date of three of their birthdays. But unlike horseshoes and hand grenades, I don't think close enough on the number of grandkids or their birthdays is a qualifier when it comes to grandpas being great. At least on most days I remember their names. Again, “most days” doesn't seem like enough for greatness.

When we get to the part about “Survived by,” we face a situation that is easy for me to write but probably hard for most of you to either understand or accept. My sister and I don't really care much about each other. Notice I said about, not for. We don't. My sister has her life and I have mine. I wasn't even going to let her know I was sick, because I knew she didn't really want to hear it, but a second cousin of mine insisted, saying she would let her know if I didn't. Which would have been fine, but I didn't want to put the cousin in that spot.

So, I let her know and the result was as I expected. A lot of hand wringing followed by nothing for over six months followed by a “That's nice” when we discussed how well the transplant had gone.

Please don't feel compelled to convince me that that isn't true, that she just has a hard way of expressing her emotions. She loves her family to pieces and I just don't happen to be a part of it, except by blood. The same for me. You've seen how much love I have in my heart. Let me be clear, though. I don't dislike my sister; I certainly don't hate her. I just don't care about her or her life. Hard to understand? Sorry. It is made easier, I guess, with us living about 500 miles apart.

Still, let me close with a more typical Arnold observation, though still obit related: I was born in Scotland, and lived there for my first 14 years. I'm very proud of being Scottish and was, even before “Braveheart” made everybody burst with pride about being, or even knowing someone, Scottish. Loved the movie, used some of the music in our wedding, but... watching that movie and believing you know something about William Wallace is like watching “Robin Hood” and saying you have an understanding of the English feudal system. Just sayin'

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