Thursday, April 30, 2015

Two is the loneliest number

Depending on the delivery system you use to read my columns, you might know that May 6 will be the first anniversary of my stem cell transplant. Those who read it online, through my blog, will recall it was part of my look at birthdays and their general lack of value, except as you pile them up, since that means you're still alive.

Regardless, the point is... My medical team has told me to think of May 6th as the first day of the rest of my life. Hmmm.

Thinking about that: Both lives start with an abrupt shock to the system. In birth, you're pushed out of a warm, safe environment, and whether or not you have your bottom slapped to get you jump started, it is, literally, a rude awakening. With my stem cell transplant, all the blood was removed from my system, the “good” stem cells taken out and frozen, then I was given a double dose of a chemotherapy strong enough to kill me. Rude awakening indeed.

To avoid the aforementioned “kill me,” my baby stem cells, or sea monkeys as we came to think of them, were put back and left to their own devices. The idea was that they would start generating healthy white blood cells to bring back my immune system which was destroyed during the kill me stage. That was the idea. If that did not work, see previous references- “rude awakening” and “kill me.”

While my nurses and doctors at Brigham and Women's Hospital were all, “This will take time,” and “Things look good,” I was all, “Really?” There was a dry erase board in my room that I could see from my bed and the key number I kept following was my WBC (White Blood Cell) count. While the staff was being reasonably optimistic and definitely encouraging, the first time I looked at the WBC on the board and it was 2, my first thought was that the 2 must stand for something. Two hundred? Two thousand? Two something.

As it turned out, it did stand for something- 2. When I talked to Sheri about it, I felt like The Count from Sesame Street. “Vun vhite blood cell. Two vhite blood cells.” I thought about naming them, but I just didn't have the energy at that point that being a smart aleck required.

Since the WBC count had to be at least 6,000 before the doctors would even consider letting me go home, we seemed like a long way from Tipperary. Two. Though we didn't find this out until quite a bit later, at the time, I had as many white blood cells as I did spleens. Go figure.

Well, after some IV this, and some injected that, and some pills containing the other, my WBC climbed quickly. Then I needed to look at the other key number, at least for me. That was- how many of the WBCs were surviving? The staff had a ratio/formula, but I didn't really care. That's what the doctors and nurses were for. My job was make sure that I asked “Can I go home yet?” at least every other hour.

I must say: the first few days of the rest of my life kinda... well... sort of... they sucked is what they did. My sea monkeys were doing their part, busting their little sea monkey butts trying to help me heal, but I wasn't sleeping or eating and I think we all know that's not a good thing. Right?

Still, the sea monkeys won their battle and dragged me along in the process, which included going home after 17 days in isolation. Frankly, that seemed more like the first day of the rest of my life. And, as written in the Gospel of the Mainenites, “It was good.”

And it has been ever since. Now, since life doesn't give you too many do-overs, you'd think I would swear up and down that I was going to do it differently this time. Well, is it to my credit or detriment that I didn't even swear up, never mind up and down. I was very happy to have my life extended by an incredible team of health professionals, but... there is nothing in my history to indicate that I would do too much different faced with the chance. Oh yeah, I would try...still.

Look, I still forget my grandchilren's birthdays. I'm still unsure how old a couple of them are. I do remember their names, which, while it counts for something, just doesn't seem like enough. I love my wife and children, and my cat, with all my heart. That's a plus, right? I reach out to others and try to share my hope with them. I hand out encouragement like candy bars on Halloween (The good ones. You know, actually full-size candy bars.)

And, I guess, since I'm only a year old in my new life, that will do for now. If I can provide a positive example for anyone who struggles with a major issue in their life... well, happy first transplant day anniversary to me!

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere

Thursday, April 23, 2015

How old are you? Don't ask, don't tell

Well, I had already started a column for this week, but when I went to save what I had done, using the date as the file name, I realized my older sister Moira's birthday is in a couple of days. Would have been in a couple of days? That has always confused me. When the person is dead, is it still their birthday? I can see it's still their date of birth, but birthday? Don't know.

How old would she have been? Don't know that either. Age was a taboo subject in our house when I was growing up. Swear to God, no one knew how old anyone else was. Well, let me rephrase that. I didn't know how old anyone was.

It started with my mother who absolutely refused to tell her age. That, of course, meant no one else could say how old they were because, with the help of some hinky math, it might have been possible for someone to figure out her age. Look, I think I'm 66, but if someone told me that wasn't true, it wouldn't be a shock to me.

My mother did finally start to reveal her age when she hit her late eighties. It gave credence to her incredible toughness to be able to say, for example, “I'm 89 and I still come to America, by myself, twice a year.” Which she did. No one who knew her would ever say my mother wasn't incredibly tough, though they couldn't say “for her age” with any degree of certainty.

Moira was the oldest of the three of us. She was born during World War II, some time before the end, but after a German invasion of Britain began to seem less inevitable.

In many ways, my sister Moira was an amazing person. She battled depression and was in and out of mental institutions until the late 1970s when the medications she was being given finally seemed to gain traction. She also battled alcoholism for her entire adult life and her getting drunk after 23 years of sobriety paid a major part in her death, even though the official cause was cancer.

About now, you're probably bracing yourself for yet another Arnold column about people being inspiring and providing an example that changed his life. Well, no. I loved my sister, and came to do so despite the fact that love was something of a rarity in my family. My sister's story is more of a cautionary tale than a story to inspire.

Not knowing our family, the relationship between Moira and me would seem, well, non-existent. We rarely talked to each other. Never wrote. Very rarely visited, unless it was a side visit when I went to New York when my mother was in the country. Still, we had what in our family would be considered a really good relationship. When we found out in 2008 that she had lung cancer, going to visit her was a no-brainer. I actually visited her three times, though she was in a coma during the third visit, but even at that I was able to hold her hand and it comforted me to be there.

Moira, my other sister Betty and I visited the Sloan Kettering Institute in New York City where her doctor told her there was no reason she wouldn't live at least three more years, probably more. And she may well have, but here's where I believe her alcoholism shortened her life. She didn't really care to live another three years “at least.”

Her drinking had picked up where she left off 23 years before and by the time we were visiting the doctor, she was in financial and legal messes that she was not going to be able to fix. If she left the hospital, she was not going to have a home to go to because it would have been subjected to foreclosure and she had spent every penny she had on drugs and alcohol, so she wasn't going to be able to start again.

In addition to all the other challenges she had to face on a daily basis, she was also addicted to cigarettes. She could not stop smoking. Each day I visited her in the hospital, the first thing she would do was ask me to take her out for some “fresh air,” a euphemism that fooled absolutely no one. Her addiction was so severe it caused by almost-70-year-old sister to do the following. She asked the nurse if she could apply a nicotine patch to help her stop smoking. I really tried to impress upon her the fact that she COULD NOT smoke while wearing this patch. Fine, she said, I won't.

The next day when I walked in her room, she immediately wanted to go out for some fresh air. “You can't go for fresh air when you're wearing the patch,” I said, feeling somewhat foolish suggesting that fresh air, true fresh air, was a problem. Well my sister, bold as brass, as our mother liked to say, looked me in the eye and said, “You can if you put it on backwards,” and proceeded to show me how you could do that. Oy.

My sister was a good person when she wasn't drinking and far less so when she was. There are times I really wish she was here now so we could talk about cancer and what to do about it. But she isn't, and my sister Betty has only what I would call required interest in my health. As long as I'm alive, that's all she really needs to know. Please don't look at that as a critical statement, it isn't. The way we've lived for 60-plus years would make any other reaction... well... just plain wrong.

So, we all carry on. Each doing the best we can. All of this stuff resurfacing, though, has reminded why I used to tell people I disliked Olive Garden: When you're there, they treat you like family.

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, April 15, 2015

Happy first Stem Cell Transplant Day to me

I'll go to your party, you'll come to mine

We've given up cigarettes, we've given up wine

We've given up caffeine and sworn off desserts

We're too good to be happy, too straight to be sad

So just blow out the candles, Happy Birthday

Carly Simon

Generally my journey through cancer bounces along, day in and day out, with emotional upheaval kept to a minimum. Physically? Sure, there are good days and bad days. Emotionally, not so much.

Still, there are some dates- Christmas, New Year's, my wedding anniversary, my children and grandchildren's birthdays, for example- that make me wonder, “Is this the last one of these I'll see?” I don't feel the same about... oh... your birthday, let's say, or Arbor Day. Likewise Groundhog Day and Speak Like a Pirate Day don't even register. Easter is important, but because of it's shifting nature, it's hard to think about the next one when you couldn't say with much confidence when the next one would be.

I know I've said this before, but there's no reason to feel sad or maudlin when I share these sorts of thoughts. Yes, we're further down the road now and there's much more wear and tear on my system, so I can see where it might not be something you feel comfortable hearing about. It certainly doesn't leave me wanting to do the happy dance. But here's the thing: I can't afford to be maudlin. I don't have the luxury of being coy about something like this, especially at times like now when I am getting my butt kicked by my illness on an almost daily basis.

I have to look every thought, every situation, right in the proverbial eye and deal with it. You keep telling me how brave I am, and I'm still not sure about that. But, I will also tell you that I am not a big enough coward, I am not afraid enough, to keep shoving difficult, painful thoughts out of my head just because they're difficult or painful.

There are too many other things in my life that I just can't deal with right now, so I don't. We have two printers for our computers and neither of them works. I just don't have the energy to change that. I actually sent my friend Peters a handwritten note the other day. cursive and everything. But honestly, being unable to print things is an inconvenience. These other things are, quite literally, life and death.

We all know that no one gets out of here alive. No one. Like you, I've known that for a long, long time. However, until I got sick, my attitude was always, “Yeah. Sure. But I ain't going anywhere for a long time.” And that might still be the case, right? Maybe the only real difference between you and me is that I know what is most likely to be my cause of death.

This current bout of thinking is brought to you by my birthday, which I celebrated this week. Sixty-six; one six short of the mark of the beast. I was actually born on an Easter Sunday, so maybe, for this one year only, there is some added irony in that.

Birthdays, in recent memory at least, have always struck me in the same manner as New Year's Eve. A lot of hype over what is, really, just one more day. Don't get me wrong. I love getting presents as much as the next guy, but couldn't we just get a couple of extra presents at Christmas time in honor of the fact that we will soon be turning another year older?

Or, maybe a National Present Day. Everybody gets their presents on the same day, once a year. That way we could have all the hoopla, without any of the angst. The countdown- only three more shopping days until National Present Day- without the introspection- another year gone and I still haven't learned to deal any better with my emotional issues.

I guess the one thing I could say about birthdays at this point is that I certainly hope to have another one, and possibly more. But from where I sit, at least one more would be cool.

Then there's always this to consider: my entire medical team tells me to look at May 6, the day of my stem cell transplant, as the first day of the rest of my life, making it another birthday, of sorts.

Now, frankly, celebrating that makes so much more sense. First off, I had something to do with it. My birth birth, I was just there about nine months after my parents... well, when they... I don't want to talk about that. Suffice to say, I didn't have anything to do with it.

The stem cell transplant, though... Sheri and I were involved in determining that date right from the start. Actually, though, we didn't set the date for the transplant so much as we set the date to begin the lengthy, but arduous process that ended in the transplant itself.

So, thinking about it all, I guess I can stop pretending that my birthday means anything to me, and embrace Stem Cell Transplant Day as a true cause for celebration.

Oh, wait. I realize that puts you in a difficult position... I mean, what kind of present do you get someone for their Stem Cell Transplant Day? Especially the first pne? Wow. I guess I didn't think the whole thing through, in terms of how you would be affected. Hmmm. You know what, I'm just going to go out on a limb and say that you can't go wrong with cash.

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, April 9, 2015

A fistful of dollars

I'm sure you've noticed there are times in my writing when I dance around using real names- of people, places and/or things.

When I was writing about my encounter with a fellow multiple myeloma sufferer for last week's column, I felt I needed to be especially careful. Not for just the usual reason- that he didn't ask to be part of it. He shared some serious concerns and observations with me that I don't think he would share with just anybody.

I have become so open about my disease, and in fact, my life in general, that I forget people like to keep some things to themselves. Really. I think they do. Right? I mean... Don't you?

It isn't like with my friend Peters, though. When I wrote “Peters (not his real name),” I was stating a fact. When I first knew him it was part of the name he used when he was on the air at the same radio station I worked at. No subterfuge necessary.

Most of the time, working around names is not that hard. It's usually a privacy issue more than anything. But this week I'm faced with a doozy. I think the other person might be embarrassed, so I want to be careful. Even trying to describe what happened is tricky because it gives a lot of clues.

See, if I wrote, for example, that the conversation took place in a building where you could pretty much ignore the advice “neither a borrower nor a lender be,” you might guess- library. That would be correct. What about a place where there are constant comings and goings and people try carry no more of a burden than absolutely necessary? Airport, right? Oblique baggage reference and all.

So, when I was transacting some business the other day and the person I was dealing with said something that actually left me at a loss for words, I knew I had to work out some way of using the incident, but without getting anyone in trouble. C'mon, Jim Arnold was at a loss for words??? How am I going to let that go? It's almost like an eclipse- you'd have to view it through a cardboard telescope, otherwise seeing me without a snappy comeback might actually hurt your eyes. Brothers and sisters- I needed to tell the story.

So I walked into... this establishment and asked the... person... who was working there a money question. Let me say right off that it wasn't a bank. No. Nuh uh. Not a bank. It was another money-type of place. Yeah. Another place where money would change hands. Right. And it wasn't Western Union. You can still make money transactions at WU, I think, but that's not what or where I was doing this particular transaction.

There I was, then, not at a bank and not at Western Union... Oh, it wasn't a bottle deposit return place either. I mean, I wasn't picking up the story from when the cans and bottles had already been handed over by me which would allow us to start talking about money. Right. Not a bank, not a Western Union, not a bottle deposit return place. Got it? Clear?

I needed this person at this place to give me 40 one-dollar bills. Not for nothing, mind you. I handed over two $20 bills and made my request.

“What are you going to do with 40 one dollar bills?” the person asked.

I was taken aback, because, as I pointed out in my answer, “That isn't really any of your business, is it?”

We both smiled, since we were apparently enjoying a nice piece of verbal jousting, badinage, if you will. Notice, though, I was surprised, but not speechless. That came next.

“Oh, I know, You're going to...” and the person pantomimed what could only be taken to as a reference to sticking dollar bills in a key portion of an exotic dancer's costume. I'm not kidding. This person was, jokingly, I think, suggesting I would take my dollar bills and reward a st... str... strip... A... you know.

First let me say this: I have no problems with strippers. I was friends with a female stripper once who used a boa constrictor in her act who was surprised when her husband left because he couldn't stand the snake crawling into bed with them at night, looking for warmth.

For a time, I also lived below a male stripper. My teen-age daughters really enjoyed that one. I lived in the basement and any time they heard his upstairs door close they would climb all over each other and anything else to get a glimpse of this guy out the window.

So. Strippers? Good people. I think I was left speechless because I couldn't imagine what in my demeanor would suggest that even watching exotic dancers would be something I would do, never mind going to a non-bank, non-WU, non-bottle deposit place to gather one dollar bills to stick in their- let's call that what it is- underwear.

Admittedly, I don't know what such a person would look like, but I knew they wouldn't look like me. If the person had called me a jerk, a goof, a creep (although in some circles, I suppose that's what they were calling me), or a potato head, I would have had a snappy retort.

I admit to occasionally playing the cancer card when I want something, but this may have been the dumbest use of any of the get-out-of-jail variety of cards ever when I said, “I'm very ill. I wouldn't do that.”

And let me just say that the whole incident was funny. I wasn't offended, but amused. But it was sort of like a “Nobody puts baby in the corner” moment. “Nobody leaves Jim Arnold speechless. Nobody.” Well, now it has to be “almost no one leaves Jim Arnold speechless.” So kudos to you, nameless person in an unidentified location. Kudos to you.

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, April 1, 2015

A tale of two pities

My old friend multiple myeloma and I crossed paths a couple of times this week.

First, I lost another friend to the disease. She was a sweet woman, mom of friends of ours, and became my own friend in the end. I was able to meet her a couple of times and we were able to talk about multiple myeloma and what a dastardly disease it is. Dolly had it for four years and in the end it just seemed to wear her out. She couldn't get relief from the pain and stay active in any way, so her doctor and family made her as comfortable as possible until she passed away.

The second instance began with someone approaching me in the grocery store and saying, “You must be Jim Arnold.” Now, if you read my column last week, you can see why there might have been a time when I answered that question with greater caution than I do now. When I worked in newspapers, I was never sure whom I may have upset, so I always wanted to get some sense of why they wanted to know.

Ever quick, with handy rejoinders to spare, I would usually ask, “Why do you want to know?” Quick, right? Solid? No doubt. This was usually followed by some disjointed blah, blah, blah and we'd go from there, for good or ill. So, “Are you Jim Arnold?” Maybe. Why do you want to know?

Nowadays, people usually link me to this column and want to talk about that. And, since my picture is run with the piece each week, admitting who I am seems like the only way to go.

As it turns out, it was a friend, a fellow multiple myeloma sufferer. I didn't recognize him because- surprise- we had never actually met, but communicated online and through email. He knew me from the aforementioned photo with the column.

“You must be Jim Arnold. I'm ...”

“Oh, yeah. Great to see you.” I can be pleasant, you know. I can actually, albeit only occasionally, craft the socially correct response in a social situation.

Anyway, there we were in the baking aisle, and we started talking. It was funny to be in the middle of the store, sort of blocking the aisle a little bit, having a conversation with someone. Just like I see people doing in the store all the time. Wow.

I suppose anyone seeing us, and having to maneuver past us to get their items, would assume we were talking sports, probably college basketball, given the time of year. We weren't, though, we were talking about multiple myeloma.

After all, in theory, one shouldn't run into too many people who have it that you can talk with. It affects just 6.1 per 100,000 people in the U.S., and constitutes only 1% of all cancers. We need to take every talking chance we get.

So, there we were, talking about the disease. I had come to know him when he sent me an email about his condition, which had, at the time, just become active. He wondered if I would be willing to talk with him about it, which of course, I was, and did.

Amongst the flour, the chips of many flavors and a wide variety of decorating doo dads, we compared where we were in our treatments. He's part of a trial study comparing, I think, people who have stem cell transplants early in their treatment, as opposed to those who wait until a more conventional time. But, that is his story to tell, or not.

As we stood there, with people walking around us filling their baking needs, we ended up focusing on the crux of the matter: both of us are doing quite well, right now, my other issues not withstanding. But with multiple myeloma, more than with most cancers I would suppose, we know it's going to come back at some point. Yeah, it can go into what we describe as remission, but, since it's incurable, it is, almost by definition, going to come back. What do you do with something like that? Good question.

I initially imagined it would be on my mind constantly. Each month as I went to have blood work done and my bone density treatment applied, I figured I would be worried right up till the moment my blood work results were declared positive.

It hasn't turned out that way. Be it God, my family, my friends, my big brain... I hardly ever think about the outcome, even when I'm having my blood work done. I know. It doesn't seem possible, right? I can't tell you why I'm not consumed by it, I can only tell you that I'm not.

My friend struggles with it much more. Partly, I'm sure, because he hasn't been living with the whole idea as long as I have. His worries now are exactly what I thought my worries would always be. Again, though, that's part of his story to tell. Our bumping into each other in the store, though, brought me back to a place I had been- one where I thought I would still be living, and gave me the chance to consider what has happened.

My friend from the grocery store, my late friend Dolly, all of the other 6.1 per 100,000 and I have to come to grips with multiple myeloma in general, and, perhaps, this aspect of it more than any other. And despite all the support we have, at 3 am., when we are most alone and vulnerable, that's when we need to find something that works... for each of us. I can't do it for them and they can't do it for me.

That's why I have to take advantage of running into friends in the grocery store, or receiving a note or email from someone. What we share at those times makes the darkness at 3 am. less dark, less foreboding. And maybe, just maybe, we can help each other put our strategies in place to come to grips with our sneaky little disease.

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