Wednesday, December 24, 2014

Good night, my friend, and may flights of angels sing thee to thy rest

So, my friend Cindy passed away a few days before Christmas.

My copy editors at the Kennebec Journal and Morning Sentinel were absolute in their insistence that when people are no longer among the living, they are dead. Not passed away, passed over, gone to be with the Lord. Dead. And I pretty much agree, and it isn't meant to be as harsh as it might sound.

But my friend Cindy... she passed away.

We both had stem cell transplants, hers was done a short time before mine. There are two basic types of stem cell transplants: autologous, which uses the patients own stem cells; and allogenic where they come from a brother, sister or parent, though they may come from an unrelated donor as well if they meet a set of strict criteria. I had the former, and Cindy the latter, her cells provided by a donor in Germany. Because of how so many cities in Maine are named, I should point out that he is from Germany...Germany, not Germany in Aroostook.

Though they were used against different diseases- she had leukemia and I have multiple myeloma- there were a lot of similarities in what we were going through.

Now, I'm not good at talking to people I don't know very well, and certainly not about something like this. But her brother, who lives in Clinton, insisted both Cindy and I would benefit from talking to each other. I dragged my feet, called a couple of times, but it was not going well. Her brother simply would not let up... at all. Oy. But, thankfully, once we realized we both preferred to use email- problem solved, relationship begun.

From the day of our first email in the fall of 2013 until our last in early December of this year, we shared just about everything that related to our health. When we were afraid, we told each other so and if it meant crying together, we did. We also laughed at the absurdity of our situations. We used a few curse words here and there (her more than me- just sayin') and didn't shy away from the seriousness of our illnesses. She told me how much she loved her doctors and nursing staff and I told her how much I loved mine, As a nurse herself, she allowed she may have been a “little” difficult as a patient in the beginning, but quickly learned to let them do their job.

As we settled into the longer-term care for our illnesses, our paths started to diverge somewhat. My results were very good, right from the start. Hers were initially encouraging, but didn't stay that way. She was home for a short period of time, but constant infections forced her back into the hospital. She had numerous transplants in an effort to get her bone marrow to start growing again. It had been destroyed at one point, but, unlike my own, it wasn't responding to treatment. She had no white blood cells and despite numerous attempts, they would not return.

At the same time, she was suffering infection after infection, and the decision was eventually made to let her go home. She wasn't going to get better and she deserved to be where she could see her beloved cats, and her gardens, and all the things that made up the life she and her husband had carved out for each other.

I continued to send her emails, though I knew she didn't have the strength to reply. But I wanted her to know that I still cared for her and was still thinking about her, and frankly, I didn't want to give up the connection. So the emails were chit-chatty and needed no reply. But as her conditioned worsened, it seemed like dealing with them would have been just another burden on her family. So I stopped.

Then her brother sent me the message that she had passed away at 5 am., quietly and in peace. Amen.

I have to tell you- we lost a shining light when this woman left us. The light was fueled by unimaginable courage. So many of you have talked about the courage you see in my writing, and I thank you for it. I look at Cindy and thank her for the courage she showed me, some of which I hope to be able to pass on to you.

The other huge thing I saw in her was her love for her family. The last days of her fight were for them, I think. It would have been so much easier to just let go, but there was no way that could happen. She wanted to give her family every minute with her that she possibly could, and she did.

She was as important to me and my recovery as anyone, except my wife, Sheri. I find myself sad at the end of each day now, because that was the time I gathered up the bits and pieces to put in my email to her for the day. I guess I'll stop doing that soon enough.

So, I've lost one more person who has been very important to me and I am certainly diminished by the loss. Oh... Did I tell you that I never met Cindy? Never. We made numerous plans for when she was well enough to come up here to see her brother, but the one time she was able to, she had way too many other things to do, so we settled on the next time. Sheri and I also offered to stop by the hospital when we were in Boston for one of my own checkups, but she asked us not to, and I certainly understood that.

Goodbye, Cindy.

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 18, 2014

Oh. Christmas tree!

And you asked me what I want this year

And I'll try to make this kind and clear

Just a chance that maybe we'll find better days

The Goo Goo Dolls

Thanks to my friend Maria, a lot of people have read about my embarrassing search for the perfect Christmas tree.

It started long enough ago that the particulars of how I came to write about the search for the perfect tree are foggy, but I know Maria was the one who made me do it. Whether it was because she was editing a particular Christmas supplement for our newspapers and needed material, or because it was easier than arguing with her about it anymore.

She's 5-feet tall, on a good day, if you squint, and measure in meters. She's an Italian-American from Brooklyn, NY, and... well... Let's just say she's feisty. She also has a huge heart, is incredibly loyal, and, when it comes to loving people, after my wife Sheri, my kids Jennifer, Alison, Kristie and Jason, there's no one I love more.

Anyway... There was space to fill in this special section and I put together a piece about my search for the “perfect” tree. Maria thought it was hysterical and, in fact, used it during more than one Christmas. I didn't think it was all that funny, and that some of what people were responding to was the fact that almost all of them had spent a similar amount of time trying to find their perfect tree, probably with similar results.

The real problem with the search idea was that I had actually found the perfect tree in the first one we bought. Janice and I, who were married at the time, found it just outside Geneseo, NY, where we were both trying to finish college. We paid $5.00 for it, at a time when I was making $1.15 an hour working part-time, and we were preparing for the arrival of our first daughter in less than a month. We used the price tag as an ornament. Perfect.

I don't know if that was pure luck, or our standards were lower, but it was never that easy again.

In the interest of time, let me just cut to the most horrible part- the hunting and foraging phase. Someone decided it would be great to head into the woods to cut own our own tree. I say someone, because I cannot imagine I thought this was a good idea. I had a feeling that “we” would become “me” once the terrain turned bad, sawing had to be done, and dragging was brought into play.

So let me ask those of you who have done, or still do, this. What's the biggest problem with the tree you get? Right. It is waaaaay too big. No matter how hard you try, you cannot get perspective when you are looking at one tree amid a forest. I mean, it can be the smallest tree for miles around and still be more appropriate for the town square than your living room.

This led to a number of years of Janice turning up the Christmas music in the living room, while I cursed my way through resizing numerous Christmas trees. A holly, jolly Christmas indeed.

The hunting-foraging phase peaked the year our younger daughter Alison and I went alone on a weekday afternoon to get our perfect tree. I should note that, in terms of snow, knee-deep is a relative term. What was knee-deep snow for me was shoulder deep snow for Alison who was about two-and-a-half years old. This meant carrying her for a ways, putting her down, going back to drag the giant tree, then carrying her, then putting her down and so on.

Well, as I'm sure you can imagine, that got old pretty quick. Then my big brain kicked in. Alison was little, the snow was solidly packed... so I simply dragged Alison across the top of the snow with one arm while dragging the tree with the other. It was perfect. Yes, she bounced a little bit now and then, and yes, she did sink in a few times, but I just made a big deal about her helping Daddy with the tree and, probably, told her Santa wouldn't like it if she complained (or told her mother).

I know. I know. It's no wonder I have trouble sleeping at night.

Once I was single again, and the kids were with their mom most of the time, the pressure was off. I bought an artificial tree, but had trouble getting it to stand up straight. So I got a coffee can, filled it with cement, and stuck the tree in the cement. Now that, brothers and sisters, was a perfect Christmas tree.

So, you're probably wondering, what does all of this have to do with my journey through cancer? Everything, actually, because I'm not just a cancer sufferer. I'm also the guy who dragged his young daughter across the snow when looking for a Christmas tree; who saw cement as an important part of the perfect tree[ and the guy who married the girl of his dreams.

I'm also the guy who has looked fear in the eye and laughed (ha ha) and looked fear in the eye and curled up in a ball and cried; who still tears up when he thinks of Samantha, the beloved cat that he and Sheri had to put sleep last year but who, a few weeks ago, was finally able to find a place amid the grief for seven-month old MacKenzie who helps make every sorrow we have right-sized.

I'm also the guy who can honestly say that when it comes to my life... cancer is the least of it. As noted in song by Emerson, Lake and Palmer: “Hallelujah, Noel, be it heaven or hell, the Christmas we get we deserve.”

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 11, 2014

Anybody seen my path? I had it when I got here

I have another question for you.

Have you ever been going along, pretty comfortable with who you are, quite sure that the opinions you share with others are, if not Dali Lama deep, at least Salvador Dali deep? Then all of a sudden a voice in your head says, “Poseur.” Or maybe it says, “Poser,” or “Poophead” or “What are you going on about?”

Anyone? Anyone at all? It happened to me a few days ago. Actually, it's happened to me plenty of times. The difference on this occasion was that when you decide that the things you think about are of sufficient interest to others to have them printed in a column in the newspaper, or online... you better be sure that what you write has some value to anyone who isn't you.

Whaaaat?, I hear you say. “Not you, Jim Arnold. Of course your thoughts have value. You're brilliant.” Yeah, sure. Don't kid a kidder people. What if I'm not even all that interesting? Suppose I just had a limited number of semi-interesting thoughts stacked up over the years, and I've used them all up?

Well, I thought about that, and decided, no, regardless of what else, I'm still the person/writer I was when I began writing “Finding the Pony.” Technically, if anything, I'm a better writer now than I was a year ago. I certainly have become more serious about writing than I ever have been, and have actually thrown away a number of completed columns that just didn't feel write (get it?). There have also been dozens of false starts, an idea that was foreign to me in the past. If I started it, I was going to finish it, by cracky. And not to brag or anything, but I won awards for column writing in New York. Yes, the last one was 16 years ago, and, yes, I gave up writing columns when we moved to Maine, but give me a break. I'm having a crisis of confidence here.

So, if the writing itself isn't the issue, what is? Well, I think I might have gone off the path... a little bit.

When I started to write about having cancer, I had no idea what I was doing. I set up my blog and began to write.... about cancer! Better topics to write about aren't going to come along too often. Cancer has everything: life, death, joy, sadness, fear, hope, drama, comedy, longing, regret and so much more.

Okay. Let the writing begin! Ooops. Within a week, the editorial page editor of the Kennebec Journal/Morning Sentinel asked for permission to use the blog, say, once a month. Sure, said I. After all, one of my motivations was to reach people who might not be able to express themselves, so the more the merrier.

Involvement with the newspapers turned out to be a game changer though. Instead of just writing for me, and a handful of friends (maybe), what I wrote was now being read by thousands of people... and it was being run on the editorial page every Saturday, not just once a month.

As the weeks went by, I began to get emails, cards, letters, phone calls from readers, most of whom I did not know at the time. You began to approach me and Sheri at the grocery store, the cancer center, on the street, in elevators... to tell me how much you enjoyed my writing. How much it meant to you. How helpful it was. And how many other people you know looked forward to it every week.

At first, that was okay. My writing had generated interest before, mostly positive, and it was nice to know that people were enjoying what I was doing. And I knew the praise would stop. It always has. Well, guess what? It still happens. A lot. Not only do people continue to tell me how much they like it, they ask me “Please keep writing. You help so many people.”

How did this happen? Who's responsible? I'm not the “Please keep writing” kind of guy. I'm more the, “That was fun, but it's become too hard. I think I'll quit” sort of guy.

When I was little, my grandfather used to show me how to candle eggs. If one didn't look right when held up to the candle, we didn't keep it. That's what I feel like now: If you held me up to the light from a candle, I wouldn't look right and you'd put me aside.

And that's part of losing the path. I began writing about how I felt and I think I'm now trying to write how I think you want me to feel. On top of everything else, it all seems a bit egotistical. So, I stopped writing. So what?, I said. Get over yourself I counseled.

Hey... Wait a minute. This doesn't sound like a pathetic attempt to generate compliments for my writing does it? Does it? Noooooooooooooooooo. Don't fall for it.

Great. Now I seem to have gone off my new path. Still, if, despite all I've just written, you feel moved to offer positive comments, you can reach me... Wow. I'm going to stop now.

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 4, 2014

Unmitigated gall? Mitigated gall? Tomato? Tomahto?

In the year-plus that I've been writing this blog/column, my wife Sheri has never, truly, asked me not to write about something. She's been my partner through many of my column-writing years, both in New York and here in Maine, so she knows that I need to write what I need to write.

By the way, this writing/not writing has never been about some melodramatic expose likely to bring hoodlums to our house to break things, including one or both of us, to get me to see the error of my ways. (I have had threats like that, but they were before Sheri and I met and mostly involved comparisons to Adolf Hitler, and/or his henchmen, so I'm not sure how serious they were.) Frankly, it isn't always easy to find something to write about each week. When I do come across an idea, I don't like to abandon it just because it might prove embarrassing to one or the other of us.

So, when Sheri asked me not to write about the hospital/medical stuff we were going through this week, I knew the request came only after considerable thought. I also sensed that this request was motivated by something other than what normally causes her to hope that I don't write about what she's pretty sure I'm going to write about.

Early on in our relationship, her main concern was that I not write something embarrassing, especially to her. When she saw that embarrassing was my middle name, she modified her wish. She asked me to just not write something that would make it uncomfortable for her to leave the house for a week, or more.

Hey, I'm a sport. I'm a player. I figured I could do that. And other than a column I wrote in New York about trying to get rid of squirrels using a method that involved a garden hose, a duct-taped extension, her leaning out over the edge of a roof while I (hopefully) held her to keep from falling, as we tried to blast a squirrel nest from a backyard tree during a violent thunderstorm... I've been pretty successful.

Sure enough, the latest request, presented while sitting in the gastro doctor's office waiting to try, again. to determine what, if anything, we could do about the pain in my stomach, came from a worry Sheri had about regular readers of the column. I asked her why she didn't want me to write about it. She was concerned that as we failed to make progress on a solution, people would become discouraged, worrying that maybe they would have to go through the same trial and error over what their ailment was.

I considered that a terrific answer/reason and it did cause me to pause for a moment. The last thing I want is for anyone to be discouraged by anything I write. Au contraire, as our French friends say, I want people to feel encouraged and supported by my writing. That's actually the main point of struggling to put a piece together week after week.

But, here's the thing... I decided I needed to write about this as I have written about every other aspect of my journey through cancer. Remember, I said in the very beginning that I would tell the story of what I was going through, at any point in this fight, as honestly and openly as I possibly could. How else, I figure, can people count on what I say to be credible.

Regular readers know I wasn't always the type of person I am now. Previously, my main goal was to keep you happy. If that meant being somewhat circumspect, well... it was for your own good, right? What you didn't know wouldn't hurt me. I wanted to control your pain and unhappiness. So I doled out the truth in pieces I determined were just right for you to take. My goodness. What an ass. That's the worst possible kind of ass-ness, by the way, because at first blush it can seem like a well-intentioned effort to help another person through pain and sorrow.

But it doesn't. It's wrong-headed. People have the right to suffer their own pain at their own time and in their own amounts.

So, you might ask, other than, blahbiddy blah blah blah humina squawk and fizz, what's it all about, Alfie?

It's about me telling you that I am surely going to have my gall bladder removed, even though we aren't 100 percent sure that it's the culprit. There was one more test Gastro Guy wanted to run, but it would have meant injecting my body with IV contrast to help the scan I needed and that was a non-starter. From the very beginning, I was told not to have IV contrast used during scans. The possible issues for patients with multiple myeloma include renal failure. I didn't even have to consult my well-worn copy of Reader's Digest's “Make Pain Disappear; Proven Strategies to get the Relief you Need” to know that renal failure was bad.

Now, the normal Plan B would be for me to drink a god-awful liquid that would produce the necessary contrast. But Plan B wasn't an option because... Well, I don't know because. I was just told, by yet another very nice nurse lady, that this next test was not Plan B-able.

So, it's time for there to be one less gall bladder in the world. Which is a great Plan C, if ever I heard one.

As to Sheri's concern: I hope you haven't found this search for a solution discouraging. There's no reason to when you consider that determining what it isn't can be just as important as figuring out what it is. Besides, I think the Masons have something to do with it and I know a guy.

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.”