Wednesday, February 26, 2014

Sometimes the joy's in the journey; sometimes it's not

You know the best thing about thinking too much? It's... ummm. Well, you can... It lets you... Nothing, actually. Nothing is the best thing about thinking too much.

But as surely as a blind squirrel will occasionally find a nut, sometimes all that thinking can produce a thought that actually works. For example, when I started writing about having cancer, I struggled with how to position what I was doing. I didn't want to talk about following my illness, or my disease; I wanted to write about more than that. I didn't want to use “fight against cancer” because the idea of me fighting cancer suggests more control over the situation than I could ever hope to have.

I settled on “my journey through cancer” and that seems to have been the right choice. It certainly is a journey. At first, the fact that I had cancer didn't mean much; not really. I didn't feel any different, I didn't have to make too many changes to my lifestyle. Yes, I knew I had cancer because my doctors told me so, but “What did it mean?”

I've said before, I imagined you could physically feel the malignant cells chewing their way through your system, like some ersatz Ms. Pacman. Well, no, that wasn't the case.

Even the treatment was not what I'd expected. Yes, I was on chemotherapy, but I took it in pill form. Granted, the instructions that came with the pill said should the capsule spill its contents for some reason, DO NOT touch if with your bare skin. The instructions did not suggest a hazmat suit, but I don't think the manufacturers would object, should you decide to go that route. Also, when I have to order a new supply, I have to go through three different people at three different places, each one asking numerous questions about how I've been taking the drug. The questions are always the same and so are my answers, but “same as the last (expletive deleted) time” is, evidently, not an acceptable answer.

So, that process is annoying, but still, it is not sitting in a chair with an IV dripping into your arm. But wait, there's more.

My first oncologist retired and his replacement- remember it's a journey- deemed me an excellent candidate for a stem cell transplant and who was I to say no?

As the journey continued, my doctors discovered a rare chromosomal disorder called chromosome deletion 17p which has a tremendous impact on how my cancer is treated. I believe it is by the grace of God that the doctors I have working with me are actually well aware of this issue and are confident they know the best way to attack it in order to lengthen the remission I gain from my stem cell trans-plant.

Now, to address the chromosome issue, I do sit in a chair and have chemotherapy presented through an IV, as well as taking the pills.

As for the transplant itself... We can save that for another day. I don't even know how much of it you would find interesting. It involves taking some of my own stem cells, freezing them, subjecting my system to very harsh chemotherapy, then putting my own stem cells back, after defrosting of course. Since my life literally depends on taking care of those stem cells, I guess it's only natural to have had a couple of Far Side moments around it. The comic panel shows a liquid covering the bottom of a refrigerator and two doctors looking at it: “Geez George. I thought it was your turn to make sure the fridge was plugged in!” Tacky, I know. I won't even tell you about any of the others. No reflection on my actual care, since numerous redundancies are built in, and my care team is wonderful. It's just the sort of thing my brain will cook up just for its own amusement.

Even though it doesn't begin in earnest until the middle of April, the transplant looms large in our lives, like the elephant in the room that no one talks about it. Except we do talk about it, constantly. So technically it's just like an elephant in the room; too big a thing in too small a place (my brain). We have so much preparation to be done, arrangements to be made, financial concerns to be addressed... it is... daunting, to say the least.

And here's the thing... I still have time to put a stop to it all. If I say I've changed my mind and don't want the transplant, the entire cottage industry that is Jim Arnold's stem cell transplant shuts down and moves on to the next case.

For better or worse, though, I can't do that; can't even consider it. None of my doctors have talked about... well, bluntly, how much longer I can live with what's wrong. But, one thing everyone agrees on: the stem transplant will extend that time and time equals hope; hope that a cure can be found for multiple myeloma. We'd still have the chromosome deletion to deal with, but without the cancer that becomes a whole different issue.

Anyway, this has been my journey to date. It's like the kid in Family Circus when it shows the route he took to get home and it wanders all over, but it gets him home anyway. That's my journey in a nutshell. It's taken me to places I never thought it would, but the goal remains getting home safe and sound, with my new pony in the yard. A guy can hope, right?

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, February 19, 2014

The kids are alright

I have to tell you... There are days I feel weepy; that is, like weeping for no apparent reason. I feel that way as I write this. I begin a thought, and tears leek from my eyes. What kind of thought? Any kind. It's snowing...weep. It stopped snowing...weep. It looks like it might snow again... And so on.

I accept it as is and so does Sheri. It can be a little awkward when someone who doesn't know me that well asks what they thought was a simple question, and I have to answer through tears, pausing to collect myself enough to finish the answer.

Today, even though it doesn't feel like it, the weeping may be related to the fact that my daughters, Jennifer and Alison, visited us for a couple of days and left this morning to go back to their own families and challenges. We always refer to them as the girls, by the way, always have. The fact that Jennifer is in her mid-forties and Alison in her early forties doesn't change anything.

I am tremendously proud of both of them. They are terrific moms, kind and generous. Jennifer is a pastor's wife and deals with the responsibilities that entails. Alison is is involved in her kids' schools parent-teacher organization, and has served on a local library board. So both are giving back to their communities.

Sheri and I have been cocooned in dealing with my cancer since the beginning. Friends have helped. Jen, Alison and my stepdaughter Kristie have been involved of course, but from a distance, because they have their own lives to live. Kristie is in San Francisco, but will be here when the timing is right to help me and her mom, though if we asked her to be here tomorrow, we have no doubt she would be.

It was important for the girls to be here, though, because we wanted them to see what my cancer and its treatment look like. There are good days and bad days, and now they know what that actually means. My energy level fades in and out as the day goes along. They saw that. It isn't especially scary or upsetting, it's just what happens. They know that now, firsthand. Sheri and I are no longer the only ones who understand.

And we laughed... a lot (weep). We made jokes at each other's expense, as we always have, and laughed. We talked about my treatment in greater depth so they could get a better sense of what was going to be happening. But we did that within hours of their arrival and it never really came up again. It didn't have to. Again, my illness is only a portion of who I am. We gave it the appropriate amount of attention, and then moved on to talk about other things.

It was a joy having them here. So maybe it shouldn't come as a surprise that I am weepy today.

The thing about still thinking of them as girls brought me right back to when I visited my mother ins Scotland three years ago. I hadn't been back there since we left in April 1963. My mother, who was 89 at the time, was quite sick and I wanted to visit her when she was still able to function at a high level and we could enjoy our time together. Which we did. Except...

I had rented a car while I was there so we visit some of the places I remembered as a kid, and just generally be able to get around. One night I decided to go out by myself. An organization I belong to here had a number of clubs there and I wanted to see if they conducted themselves in the same manner. Off I went, telling my mother I would be home by 9 pm.

There was virtually no difference in the way the group conducted itself, except- and this would become important- their meetings lasted a half-hour longer, so I didn't get home till 9:30.

I walked in the house to find my mother standing in the corner by one of the front windows, spring-loaded and ready to fly across the room, which is what she did.

“Wherrrre have you been?”

“At the meeting I told you about.” It sounded lame even to me, but I was the only truth I had.

“Och aye. And de ye ken what time it is?!?!?!” I assumed it was rhetorical, which it must have been because she didn't wait for an answer. “Ye should have been home half an hour ago. I've been worried sick, so ah have.” She seemed to be on a roll now. I just stood there feeling smaller and smaller. “It's dark oot. Ye don't know yer way around anymore. Yer no used to driving on the other side of the road...”

She paused for breath and I offered the only defense I had. “I tried to call you, but the cell phones here are really different and I had all kinds of trouble.”

“Did ye get thrrrough?” I admitted that, obviously I hadn't. “Well it disne count then does it?” The thought is now going through my head that I am a 60-year old man and I can feel indignation getting ready to make an untimely appearance. Fortunately, I remembered, 60 or not, I was and always had been the baby of my family and stood there and took it like the 7-year old my mother was addressing.

She eventually ran out of steam, but the next morning I woke to her telling my cousin, “So. Ye'll never guess what Lord Muck did last night!” Whereupon, I heard all my indiscretions repeated and then repeated again when she called her friend of 71 years to let her know what Lord Muck had done.


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, February 12, 2014

And so it goes

So I would choose to be with you
That's if the choice were mine to make
But you can make decisions too
And you can have this heart to break

'And So it Goes'
Billy Joel

Wow. Another Valentines Day is here. Doesn't time just zip right by, though?

My dad was born on Valentines Day, which, around our house, didn't make his birthday all that special. See, my mother was born on New Year's Eve and I was born on Easter Sunday. My sister Moira was born on St. George's Day, the English equivalent of St. Patrick's Day, only much quieter. My sister Betty was born on Cinco de Maio, but that didn't mean as much when we were growing up in Scotland in the 1950s.

Interesting side note: Moira and Betty were seven and six years older than me and Betty pretty much established the nature of our lifelong relationship when, the Easter after I was born, she asked my mother, “Ye aren't going to have another one of them, are ye?” Yeah. The stories I could tell.

Maybe it's because the annual salute to love named for a saint, who may actually have been two saints, and about whom his Feb. 14th date of death is the only reliable information we have, is so close, or maybe it was because I was actually out of the house, driving...driving! for the first time in two weeks, listening to an old cassette... but I was really struck with some to the overwrought things we say in the name of love.

I was listening to the Canadian band Honeymoon Suite (told you it was an old cassette) singing 'What Does it Take:' “If I could fly high, I would give you the sky.” Obviously it's a wonderful lyric, well sung, but really? As a declaration of love, it's pretty easy to say isn't?

“And when the masquerade is played and undecipherable mumble, mumble, what? to play today.” Yeah. I see that. I've been trying to figure out the lyrics to 'Along Comes Mary,' by The Association, for going on 48 years. Still, I bet if we knew what it was, it would fit my premise!

And take any song, ever, and I do mean ever, by The Carpenters and you'll find pointless observations about love on top of silly things to say about the object of your affection: “Why do birds suddenly appear, every time you are near, just like me they long to be, close to you.” No they don't. And the bit about the angels getting together to “sprinkle moon(something) in your hair and golden starlight in your eyes of blue.” No they didn't.

I know what you're thinking, “OK Mr. Smarty Pants. We danced to 'Close to You' at our wedding and still love the song. What would you think is a great love song? In fact, what did you and Sheri dance to at your wedding? “Send in the Clowns?”

Ha Ha. I don't really know what makes a love song for you. For me, the lyrics have to tell a story I recognize and have usually lived through, in one form or another. Or maybe it just had to be playing on a jukebox or radio when I was falling in love, mostly unrequited, for the umpteenth time.

It's also hard for a song to talk about the things that people do to show how much they love someone, rather than just talk and/or write poetry about it. Most of those things, on the surface at least, just don't seem romantic: holding someone's hand as they are being sick, rather than closing the bathroom door and turning up the TV; someone saying, “It's only a car,” after you have stupidly backed into their car while it was sitting in the driveway; someone you can get into a horrible argument with and know they will still be there when the smoke clears; someone who actually loves you despite of, not because of.

Sheri and I, for example, knew we loved each other long before the Friday night in September when I had to tell her I had cancer, changing our lives forever. It was difficult to tell her because I knew she would be hurt and worried for me, not because I was afraid she was liable to say, “That's it for you then!” as she packed her stuff and left.

True, by that time we had already done a lot of hard work on setting boundaries, letting the other person be, letting them make on their own mistakes.

The biggest thing we had to do, and maybe it was for you too, is actually in the answer to the question of what song we danced to at our wedding: “And So it Goes,” by Billy Joel. We had both been married before and I was coming off an ultimately unsuccessful long-term relationship, and Sheri and I each had our shields up, fazers on stun. We talked and talked about getting involved, we both went back into counseling over it, and yet, when all was said and done, our relationship truly began when we were each able to say, “You can have this heart to break.”

I was talking to Sheri's sister a while ago about my cancer and bringing her up to date on my treatment, when the following words came out of my mouth: “If you had told me when Sheri and I started going together that the next 20 years would have been as (mostly) wonderful as they have, but as part of the deal I was going to get really sick with multiple myeloma at the end of the 20 years, I would have taken that deal... no regrets, then or now.”

And so it goes.

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.”

Friday, February 7, 2014

Adding to my 'List of Whoas'

Well, World Cancer Day 2014 has come and gone. When I initially realized it was Tuesday, Feb, 4, my first thought was, “Wait. What? There's a World Cancer Day? Wow. Is that new?"

Actually, it's been around since 2008. You would think that since cancer has taken the lives of my mother, father, sister, Moira, and some of my closest friends, the fact that there was a World Cancer Day would have registered. Wrong. I do, however, know that Sept. 19 is International Talk Like a Pirate Day. That's how my brain works. There are certainly times I wish it were not so. Arrrrh to be sure, I do. But, there you arrrh.

I spent World Cancer Day flat on my back, sick as a dog, again, and my cancer had nothing to do with it. I had contracted some horrible intestinal thing that was worse than the flu I had just gotten over. Its origin remains in some doubt, but generated one of the oddest discussions Sheri and I have had in over 20 years of being together.

On Monday, she had brought me home a wonderful dinner as a treat and a surprise. Shortly after eating it, I became really, really, really sick. Really. I called the Alfond Clinic first thing Tuesday and spoke with one of my nurses. She said it could be food poisoning, or one of a number of gastrointestinal ailments that were going around.

Let the discussion begin. As a Type 1 diabetic, Sheri works really hard to avoid any kind of bug going around because when she gets something, it is always much worse than the average person. So, she was pulling for food poisoning. We had eaten different things, so she was sure she wouldn't get sick.

I, on the other hand, didn't want my wife to feel bad that she had brought me this wonderful dinner as such a kind act and ended up poisoning me. I was pulling for gastrointestinal.

We may never know, and it doesn't matter in the end. I was much sicker physically than when I had the flu. It's funny that I had just written about fatigue and the negative impact that it has on me, because suffering from nausea with severe body aches takes my defenses and tosses them aside like Tokyo buildings in a Godzilla rampage.

It left me flat with absolutely nothing to do but think. Yeah. Think. With my big brain. Hmmmm. Raise your right hand if you think that could possibly have had a happy ending.

For unknown reasons, I spent what seemed like an eternity reviewing how I had hurt people and other living things I cared for 40 years ago; and 40 years was just the starting point. Eyes open, eyes closed; the images kept coming. As I write that now, it probably seems like a bad enough thing to you, but in the middle of the night, with hot and cold flashes coming like a poor relation when they hear loose change clinking in your pocket, it was horrible. Not to be pretentious, but it felt like being in a painting by Hieronymus Bosch, with horrible scenes being played out everywhere I looked. I know. I know. Melodramatic, right? Not at three o'clock in the morning; not with some unknown crud using your body as a Foosball table.

(Arnold note: If you've never been exposed to the art of Hieronymus Bosch, I sincerely suggest you don't Google it. It's wonderful, but... I realize by saying that there's probably no way you're not going to look now. At least my conscience is clear. Enjoy,)

Probably the craziest feeling, though, was this: I, and those around me, are involved in a fight for my life against multiple myeloma and a damned chromosome disorder. I can't even count the medical staff who have become involved in my care. My family, friends, strangers who, one way or another, show their support for our fight... Just before I got sick, for example, we were in the grocery store. I was wearing a mask and this lovely woman came right up to me and asked, “How are you feeling today?” And she meant it! I have no idea if I knew her, or if she knew why I was wearing the mask. It was such a kind thing to do. We chatted for a little bit, about the weather and such, and then she went into the dairy I aisle, and I resumed my search for orange juice.

And yet at three o'clock in the morning with my stomach roiling and my mental state... well you already had a glimpse at my mental state... The words “Take me now Lord,” may have escaped my lips May have. I'm not sayin' they did and I'm not sayin' they didn't. But, I wouldn't have been surprised if they did..

I actually started feeling better when I went for my newest chemo treatment on Thursday, part of which is an IV of fluids. Between that, and an anti-nausea medicine they gave me, the worst of it seems to have passed, leaving me to think, and not for the first time, “Jim's thinking..Why you no work so good when you're sick?"

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.”

Monday, February 3, 2014

Some side effects are worse than others

First off, I have to share a concern. I wonder if playing the song “Jackson”- you know, “We got married in a fever, blah, blah, blah and we're going to Jackson....blah, blah, blah”- over and over in your head is some side effect of my new chemo that the doctors were afraid to tell me about.

I hate that frickin' song and have hated it for over 40 years. And to make it even worse as it plays in my head it is an amalgam of two different versions. The female part is Nancy Sinatra and the male is Johnny Cash. “We've been talkin' 'bout Jackson, ever since the fire went out.” What does that even mean???? Make it stop!!!

But, I soldier on.

We added some new bits to our treatment plan this week. We added a new chemotherapy drug aimed at reducing the effects of the chromosome deletion 17p we found out about when we were in Boston. Also put in the mix was a drug aimed at hastening the repair of damage done to my bones by the multiple myeloma.

The chemo involves an IV of liquids into which a five-second shot of the drug is added through the IV line. Completely painless. The bone densifier is also added to the fluids through a separate bag. Also completely painless. I hope that's not too much information. I figure inquiring minds probably would like to know.

I was concerned about the new drug- it certainly wasn't the one Huey Lewis was referring to back in the 80s- but I didn't really feel much worse than I had when I was only taking the one chemo pill. My bones hurt more than they did, but who the heck knows what that means. It could be the weather for all I know. And I feel more fatigued that before.

I am really tired much of the time. Now, I have pretty much ceased to be surprised by any irony in my situation. Still, one can't help but laugh at the fact that while the new medicines increase my fatigue, the new chemo also has the side affect of interfering with sleep. Seriously. I suppose there was a time when I would have been outraged. Now, I must confess, it's a case of “Of course it does.”

Though most often credited to legendary football coach Vince Lombardi, Shakespeare once wrote “Fatigue makes cowards of us all.” I think, to a certain extent, that's true. In my current situation, I feel coward is probably the wrong word...a bit strong.

Being as tired as I am, though, certainly impacts my ability to deal with things. It seems like I can either address my mental state and continue to fight the disease and its constant attempts to make me give up, or I can help Sheri switch over our cell phones to a new plan, or deal with some of the other cost-cutting ideas she's trying to incorporate into our lives as we consider the financial impact of my care, while we both turn 65 within two weeks of each other.

Sheri would never, ever ask me to do anything but to continue our fight, but it hurts my heart to see her have to do so much of this other stuff on her own. We've always done those sorts of things together, and now, because of this crappy cancer and a lousy genetic disorder- the odds against actually having, by the way, are up there in winning the lottery range- she has to do all that by herself, as well as worry about me and what I might need at any given time.

So, yeah, fatigue has a tremendous impact on my ability to cope, let alone dealing with “Jackson” ringing in my brain constantly. But here's the thing... Fatigue has no better shot at winning this fight than does multiple myeloma, or chromosome deletion 17p. Not now. Not today.

Each time it seems the scales are going to tip in their favor, that I'm. just. too. tired. I get an email from someone, or a text, or a note on Facebook, or run into someone in the street who tells me they have been following our struggle and how much it means to them that we remain positive and willing to share our fight so openly with others.

I really struggled with whether or not I should blog about this, or just keep it to my own journal. I chose to write about it openly because, as I've said here so often before, writing about things in my life is what I've always done. I also thought I might be able to help some people who couldn't express themselves as openly.

Well, fool that I sometimes can be, I had no idea that in telling you what is happening, I was giving you each a chance to help me. Duh. You have been wonderful. You have kept Sheri and me in the fight and that's where we're going to stay. There may come a time when I can no longer say that, but I can say it today.

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.”