Tuesday, January 28, 2014

Saturday: a docudrama in three acts

The book of love is long and boring, no one can lift the damn thing
It's full charts and facts and figures and instructions for dancing
But I... I love it when you read to me,
and you..... you can read me anything

Peter Gabriel

Saturday turned out to be quite an emotional day for us, We didn't plan it that way. There were a couple of items we needed to buy and it would be the first time the two of us had been out together for at least 10 days. Win/win, baby. Well... Maybe...
The whole day unrolled like a three-act play, complete with two intermissions.

In the afternoon we entered a store to make our first purchase. We were the only two people in a store which shall remain nameless, and still couldn't get waited on. Sheri finally got the attention of one of the retail personnel, who were about eight feet away from us, and told him that we needed some assistance. It seemed like a bother to him, but, to his credit, he came over and was kind enough to bring his condescending attitude with him. He also brought his phone, which he continued to play with while Sheri talked to him.
He immediately started talking down to us, a style to which I really don't respond very well.. Using as few “big” words as possible, he made a halfhearted attempt to answer Sheri's questions. When he answered “No” to the same question he had answered “Yes” just a couple of moments before, and acted like we had misheard, I put my gloves on, and started heading for the door. Using my indoor voice,thank you very much, “I wouldn't buy free air from this guy,” or something like that, and left.
I shouldn't have left Sheri in the middle of the store, but I know myself well enough to know that my outdoor voice was about to make an appearance and, trust me, no wanted to hear that. Sheri can certainly take care of herself in an awkward situation like that, but she shouldn't have had to and I felt bad about that and apologized.
As for the condescending, rude and unprofessional “customer service representative?” I did not apologize to him. Any chance of that happening one went out the window when, after she had joined me in the car, Sheri did say that the CSR had been very rude and very condescending. No apology for you mister. Besides, you started it!!

There are two things Sheri and I do very little of when we're together; cry or talk about what the cancer/damaged chromosome have done to my life expectancy.
We cry plenty on our own, but being together is a time we can really talk and focus on what we're doing and what's next for my treatment, There's no crying in talk and focus!
So after the shopping shenanians, soon after we got home, I looked over and saw that Sheri was crying. “That comment really made me scared,” she said. I didn't have to ask what comment, I knew.
We had been talking about all the new medicines that will be added to my treatment, beginning Thursday, and I said something about shortening the time on the back end, shortening my life expectancy and it frightened Sheri. Hell, I'd never really spoken out loud about it and it scared me as well.
I think the big thing, though, that had us hugging harder, and crying longer, standing there in the middle of our kitchen, was that, if only for a few moments, the thought came to both of us that we could lose this fight with cancer. We aren't idiots. We've known from the start that we could lose the battle. The difference was, as near as I can figure, the two of us standing in the middle of our kitchen, holding on to one another as we had done so often before when fear was trying to take hold, made the thought of loss tangible.
Well, we stood there for a few more moments. Then we released ourselves, one from the other, and with no words spoken, we were back in the fight, with beating cancer our only focus.

As we separated, Sheri went into the study to check phone messages, emails and Facebook. I...well I just wandered around the house. Why? No idea. Maybe... just because I could?
Anyway, Sheri called me to the study. “You have got to listen to this. You'll love it.”
Well before I could explain that perhaps I wouldn't love it, she had already hit play. “Hi Mr. Arnold. I'm calling from Waterville, and just wanted you to know I've been reading and enjoying your articles. I'm an older person, like yourself, and I think they're great and I wish all the best as you take your journey.”
He talked a little bit about Leslie Gore whose song lyric I had used in a column, before wishing me good luck again and hung up.
Sheri and I were both extremely touched by the message. He didn't leave a name; no phone number. He simply wanted to let me know I wasn't alone. And for us to hear the message after the earlier events of the afternoon...
So there you have one afternoon in the journey Sheri and I are taking through cancer. Typical day? Not exactly, but not quite atypical either. I just have to enter each day with my heart and mind as open as I can manage, then wait to see what happens. Pretty exciting, if you ask 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.

Wednesday, January 22, 2014

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

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

Cry if I want to, cry if I want to

You would cry too if it happened to you

Leslie Gore

Anger. It's always been part of my emotional mix, but this week it really got out of its cage and did it's version of the happy dance in my head.

Angry at what? Duh.

Angry at who? Pointless question.

The only “who” would be fate, the cosmos, or in my case, God.. But that's the same God who directed me to the Alfond Clinic, and ultimately to the Dana-Farber Institute who not only are aware of chromosome deletion 17p but employ the most successful method of reducing its impact on stem cell transplants. So... maybe God, but not in the long run.

I guess it was “one more thing” that really set the whole thing off.

The day after I found out about the chromosome issue, while I was still trying to process just how life-threatening that could be, I started to feel like I was coming down with something. Sheri was still staying with our friend so that I didn't catch what she had, so I was able to tell myself it wasn't that bad.

Yeah. Well, she came home on Saturday, and that was the end of that particular string of denial. I had actually gotten quite a bit sicker, so it didn't take much convincing to call my oncologist at Alfond. He told me the best thing to do would be to go to the emergency room and find out what it was and then we could decide what to do next.

So, Sheri and I spent Saturday afternoon in the emergency room getting blood work, x rays, and generally poked and prodded. Well, I got poked, prodded etc. Sheri provided the essential support. I must confess, after recent events, I half expected to be told that I had something only three other people in the country had, and they all lived in Iowa. I was a little wary. Sue me.

Well, the PA came in and told us I had “Influenza A.” He said it with such flourish that it took a couple of minutes for me to realize that he was talking about a specific strain of flu. So many things present themselves as flu, that aren't, it was his way of saying that what I had was the real deal.

Influenza A sucks. It sucks bad. It put me flat on my back with a cough and congestion I haven't suffered in a long time. There was also the feeling that Sheri being gone for the week had been a waste of time. I have no idea where I picked this up, it could have been anywhere. I started wearing a mask in public on Friday, which as Sheri said, might have been one day too late.

As I lay in bed, feeling crappy, with little else to do, my anger had free range. The flu?!?!? Are you kidding me right now? We're still dealing with the fact that you have a chromosome abnormality that is a game changer, and you can't even finish dealing with that because your brain is mush from the flu. I made a decision: time to play the “not fair” card.

And that's what I did, at least in my head. It just seemed like a bridge too far to ask me to deal with all I had to deal with... and the flu. The flu really pounded my system and made everything seem worse. It just didn't seem fair.

Now, that thought string runs counter to everything I believe; everything I have written here before. But I guess when you're in a life or death struggle with your own body, momentary lapses are to be expected.

As the flu made its way back to whatever hell it came from, my anger started to recede as well. I don't apologize for it nor for playing the “not fair” card. It's my party and I'll cry if want to.

Leave it to my wife, though, to put it all in perspective, without even trying. At the height of my feeling crappy, and at my most demanding, Sheri was walking into the kitchen with her back to me and I found myself saying, “Hey. I have influenza A!” Without so much as turning around she said, “Yeah and when I had it, it was influenza A plus... can I get you a glass of water?”

Wow. Right-sized and an offer of refreshments. Sheri and I are in this fight together, and have been from the start. We have the support of our daughters, friends and an excellent medical team. It kinda turns “one more thing” into an urban myth. There's no such thing. With time to process, we can see that thought as the crap it truly is. All there is is the next thing. We just need to stay as ready for it as we can.

Poop happens, and sometimes it happens to you. That remains the truth of it, sisters and brothers. Poop happens and sometimes it happens 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.”

Friday, January 17, 2014

Oh chromosome 17... Why you no work so good?

You're a whole different person when you're scared.”

Warren Zevon

So. The plot thickens.

I had my consultation with the oncologist who will be overseeing my stem cell transplant at Boston's Dana-Farber Institute this week. Since Sheri was still sick, my friend Bob drove me down and, the doctor was happy to initiate and teleconference so Sheri could participate. Excellent.

First off, we talked about me as a candidate for the transplant. It turns out I am an outstanding candidate for the transplant. Yeah, baby. Best one in my row... as usual.

Odd thing about the transplant: All the health professionals I've talked to describe the process in words you don't usually hear from health professionals- “brutal,” “arduous,” and I think I heard at least one “horrible.” Okay. But I'm a Mainer Lite, don't forget. When something is going to be wicked hard, we call that a good starting point. Besides, the same professionals all say it's completely worth it and can make a huge difference in remission time and quality of life.

Right. I'm in. When do we start?

Well, says the doctor, you have a rare and serious genetic disorder that impacts your multiple myeloma in a big way that we nee to talk about, My first thought was, “Of course I do.” My second thought was, 'Roh roh.”

I'm still sitting there thinking that I'm the best one in my row, so I might have missed part of what he said. I did not miss “rare,” “serious” or “disorder.” Normally when I write about the actual heath aspects of my journey, I don't give a lot of detail. Remember... what I know about human anatomy I learned from the song “Dem Bones.” Anyway, I need to live in the solution, not the mess, and what I really need to know is what will help me do that.

In this case, though, I really was completely unprepared for a whole new set of issues. Turns out I have chromosome deletion 17 p. We're really just beginning to deal with it, but the doctor is fairly sure it was inherited from my parents. Now, there was a time in my life when I blamed anything and everything that went wrong in my life on my mother and father. Yeah. I know. But, that's how it was.

Now that I've moved beyond all that crap, there's no one to point a finger at to say, “You did this to me!” Nope. Poop happens and sometimes it happens to you. I do miss the occasional finger-point though.

Obviously, when you hear something like this, it takes time to process. I'm usually a pretty quick processor, but this is taking a bit longer. Its also a complicated issue and my chemistry skills are not really up to it. Again, I find myself wishing I'd paid more attention ins school. Hell, I had take chemistry twice and still barely passed.

So, as far as I can tell, the impact of this chromosome deletion in cases of multiple myeloma is that it generally cuts survival rates in half. Also, the stem cell transplant will still be effective, but the rate of remission will also be reduced . I think part of the problem is that so few people have this chromosome deficiency and multiple myeloma, researchers are hard-pressed to find sufficient data. So my head is wringing and I country see Sheri, but she was very quiet so I knew her brain was also working overtime.

But then... But then,,, We got to the good bits. My DNA includes a broken chromosome that is going to cause us a lot of pain and very tough time. Fair enough. But my DNA also has a strong no quit gene, that I think I also got from my mother. Sheri has the same and I could tell the doctor made three.

The new treatment plan is being formulated now. First, what we have been doing has been so remarkably successful, that we continue with most of that. Again, the things I have read about this say the best treatment is to add a powerful intravenous chemo, to the mix, along with the chemo pill I've been taking, which is what we're going to do. There is still an impact to the transplant, and chances are very good that any remission will not last as long. However, it should last longer than if I didn't have it done. Again, sign me up.

Some of the treatments and medicines I'll be taking are relatively new. The Dana-Farber doctor said that all of the things we are trying and doing are, basically, to buy us time. New treatments are in various stages of development, and no one knows when/if a cure will be found.

I have a tremendous amount of gratitude around what's happening to me and my family. There's hope, you see. It isn't false hope, or wishing hope, it's just good old-fashioned faith of our fathers hope .Give me that, the amazing health professionals who are working on my behalf, my wife, our three girls Jennifer, Alison and Kristie, and all of you who have been so supportive... I'm reminded of a line from “Ghostbusters,” right after they thought they'd won: “We came, we saw, we kicked its ass!” Of course, it wasn't quite over and there was a lot more screaming and crying before it did end. Details, man, details. I'm looking at the big picture on this one.

As we were wrapping up, the doctor gave me a hug and said, “Jim...multiple myeloma is incurable in January of 2014.” That, brothers and sisters, epitomizes the hope I feel as we head into the latest stage of our journey together.

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.”

Tuesday, January 14, 2014

Now there's no "we" in team


Now I'm just mad.

I'm not irked. I'm not p.o.'d. I'm not upset. I'm Peter Finch in “Network” mad as hell and I'm not gonna take it anymore mad. Except that I am gonna take it. I have no choice and that makes me mad. Not irked. Not... well, you get the point.

My multiple myeloma treatment has reached something of a crossroads. What we've been doing seems to be working, yet my oncologist wants me to consider a stem cell transplant which, among other things, increases the chances of keeping the cancer in remission. Since the disease is incurable, it also buys some time while research continues and new drugs are developed.

Well, who wouldn't want to sign up for that? Since we already know a little knowledge is a dangerous thing, let me say that what I know about the transplant procedure at this point I know from reading various pamphlets, something I normally am loathe to do. Basically, some of my own healthy stem cells are harvested (their word choice, not mine) from my blood, frozen and put back after I've received massive doses of chemotherapy and/or radiation to destroy the cancerous cells.

The recuperation period can be months, and infection is a huge concern, especially in the beginning when it seems the patient (their word choice not mine) needs to be isolated.

One of the things I've earned about multiple myeloma is that, more than most other types of cancers, each case tends to be different; each person's response to the disease and to treatment tends to be theirs alone.

This is why my oncologist here set up and appointment for Sheri and me with one of the specialists at the Dana-Farber Cancer Institute in Boston. They deal in transplants all the time and they certainly can give me specific information about what a transplant would mean to me and my long-term health. The appointment is just around the corner and we have a list of questions we want answered.

Except, now there is no “we.” Though Sheri is almost fanatical in her efforts to keep healthy, she has picked up a case of the flu that seems to be going around. There's simply no way she would be able to make the trip to Boston and back, plus all the stress of the actual appointment. Also, much of the medication I am taking as part of my treatment is actually designed to prevent infections. It can be a serious problem, so Sheri is actually staying with a friend until she gets better. Overly cautious? You tell us. Sheri will tell you that she is not about to do anything that would compromise my treatment, or even possibly compromise it. Hello friend's house.

This isn't about making the trip alone, because I know we have friends who will be more than happy to help. This is about “one more thing.” They say God won't give you anymore than you can handle. My heart believes that but my mouth is getting a bit chippy and wants to yell, “Enough!”

So I get mad and so what? I can't even throw open a window and yell out 'I'm mad as hell and I'm not gonna take it anymore.” Sheri has winter proofed all the windows and I'm not about to undo all her work just so I can throw a hissyfit.

Besides, we already know that “Enough” isn't my call. If having, not only cancer, but a cancer virtually no one has ever heard of (though I'd like to think I've changed that some); one that only about 100,000 people in the entire country have; going through the Christmas holidays with no electricity, no heat, no running water isn't enough, well, let me just take a minute to put on my big boy pants so we can continue our journey.

Obviously, fear has slithered its way back onto the scene; my (over) reaction tells me that. The transplant is such a game changer, do it or not, and to have to even discuss it without Sheri right there as my second pair of ears is disconcerting at the very least.

Canceling the appointment might have been an option, but everyone involved said “NO!” so fast, it never made it past the stupid idea stage. Nah. We gotta get this show on the road and the next phase begins with discussing the pros and cons of a stem cell transplant.

I watched a terrible move the other day called “Chained for Life” starring the Hilton Sisters (?)who played Siamese twins conjoined at the hip. One shoots and kills the other's louse of a husband and by default they both go on trial. The guy playing the judge appears at the very start of the movie saying, in effect, “We all have problems in our lives, but I'm sure after watching the following you might feel these women's problems probably makes yours seem small.”

The same judge guy came on at the end, after they had both been set free, by the way, and said, “I told you so. Yes, they're free, but are they ever really going to be free, bound to each other for life?”

Well, your honor, in your own incredibly ham-handed way you make have struck upon something, despite yourself. Our problems are our problems for a reason: so any growth we manage from dealing with them is our growth. It looks like we're looking at magic bean-type growth in the coming months, by the way.

Oh, and if I made that movie sound even remotely interesting? Forgive me. It isn't. Well, maybe the suspense of whether or not the accordion player would get his chest hair caught in the bellows...

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, January 10, 2014

Is life interesting, or what?

The tragedy is are you gonna spend the rest of your nights with the light on?

Shine the light on all of your friends...

I... I won't worry my life away.

The Remedy (I Won't Worry)

Jason Mraz

I'm not a big believer in coincidences. I believe things happen for a reason, when and how they're supposed to. I've felt that way for a long time, but never more so than in the last four or five years.

If I don't believe that, then I must believe in luck. If I believe in luck, then I have to divide it into good luck and bad luck. If I believe in good luck and bad luck, then I must believe that getting cancer was simply bad luck and that, sisters and brothers, just ain't gonna happen.

I got cancer because I had one malignant cell that became two that became four and so on until not only did I have cancer, but a type of cancer I'd never even heard of before Sept. 6, 2013, when my general practitioner said he was fairly sure I had contracted multiple myeloma and launched me on this journey.

But this belief in things happening for a reason has developed over a long period of time.

If I just look back to, say, 2008, when I lost my job at Wright Express in South Portland. I loved working there and I loved the people I worked with and for. As the last manager hired, when cuts had to be made... My round-trip car trip to work was 160 miles a day. It took, on average, 85 minutes a day. The truth was that my health was suffering because of that alone, but I never would have quit. If you worked with the people there that I did, you'd know why.

Now, little did I know I was going to be out of work for almost years during the worst economy since the Great Depression. Yikes! During that time, my job was finding a job. I interviewed at a lot of places for jobs that weren't really what I wanted to do. I even worked part-time as a volunteer for the U.S. Census. Don't get me started on that one!

Somehow we managed to keep our heads above water financially (smoke and mirrors?, but things were getting pretty desperate and my confidence wasn't what it had been. I don't remember the date, but one morning Sheri and I decided it was time to try to be rehired by the call center where I had worked before Wright Express. I left as a manager, and on good terms. The position I had was cut, so...

I dropped off my application and by the time I got home, an hour or so later, I already had an email saying I was not to fit to be rehired. What? A couple of phone calls solved that mystery. Two of the boxes on my exit paperwork covered whether I was fit to be rehired or not. Yeah, somebody checked the wrong box. And, again, yeah, it would take a few days to fix. Days to fix.

About two hours after all that noise, I got a call from the man who would become my boss at the Kennebec Journal asking if I could come in for a conversation about a position they thought I might be good for. What? Why? Shut the front door. Newspapers have always been my first love, but I thought that ship had sailed.

You're not likely to see a transcript of that interview in ANY book on how to land a job. I hadn't worked in newspapers in 13 years; I had designed pages on computers, but not on the software they had; we'd used PCs not Macs. There wasn't a question asked that I gave the textbook answer to, really. I couldn't. I wasn't going to lie, though it did cross my mind...out of work 2 years, crappy economy, returning to answering phones at a call center? Sue me.

But I got the job and all of a sudden the 2 years made sense, at least to me. It was not a coincidence; it wasn't some sort of cosmic test. It was the time it took for the job to become available and my resume to be noticed.

Then of course, there was my discovering I had cancer. I've told the story before, but I think it bears repeating in this context. The Saturday of Labor Day weekend I was doing some yard work, and it wasn't even on my honey do list. I was attacked by a swarm of wasps, stung 15 times, and cracked one of my ribs either swatting at them or running into something hard in my attempt to get away from them.

The pain from my rib was what got me to the doctor, who sent me for x rays which showed lesions he and the doctor who looked at them felt had likely been caused by multiple myeloma. I have since read that only about 100,000 people in America suffer from it. Was it good luck the doctors recognized it and bad luck that I had it? Feel free to believe it was because maybe it was. Me, I know in my heart that it happened now for a reason.

Lest this turns into another Epistle to the Maininites, let me explain the Jason Mraz quote. I had never watched the show “Storytellers,” but skipping through for something to watch, I saw Jason Mraz was on and I think he's amazing. As the title of the show would suggest, he was telling the stories behind some of his songs. I landed on the channel just as the started to talk about “The Remedy.” Turns out he wrote it for a friend of his who had cancer. People who loved the guy were upset, of course, and worried sick. Mraz noticed the only one who seemed okay about it was his friend who said “I refuse to worry my life away. I'm going to do what the doctors tell me to do, otherwise I'm going to live each day the best I can.” Yeah.

On the surface, a small example, I suppose,.but it actually speaks to the core of my belief in things happening for a reason. There is no way I should have seen that show. The odds against it were astronomical, but I did and it was one of the little encouragements I continue to get each day as long as I continue to look for them.

And, oh yeah... Jason Mraz's friend's cancer had been in remission for ten years at the time the show was recorded.

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, January 8, 2014

We're shipping up to Boston

So, our relationship with the new oncologist has gotten off to a banner start. Whether that's because he has the same professional demeanor and good bedside manner as his predecessor, or because he had so much good news for us, it's hard to say.

There certainly was plenty of good news.

First off, the chemotherapy continues to be very successful. There was no check for proteins this time, but the doctor assured us that the blood work I had done showed real progress in knocking down the malignant cells.

Secondly, he is reducing the amount of steroids I need to take from 40 mg to 20 mg. I take them once a week and they throw my system off track, make me manic, and take away my ability to stop talking. Jabber, jabber, jabber, jabber. Even as I tell myself to stop talking, the steroids are telling me not on their watch. The doctor thinks the reduced dose should still be effective against the cancer and I am certainly willing to give it a try.

And C, we're adding an intravenous medicine that will start mending the holes in my bones caused by the myeloma. My listening skills decided that right in the middle of the doctor's explanation of that process was the moment they'd done more than enough, and stopped. The treatment is a good thing, I got that much. Details will need to wait. Besides, we have bigger fish to worry about.

Namely, the stem cell transplant. My new oncologist thinks I would be a good candidate for the procedure and I guess it can make quite an impact on long-term remission. I'm not a doctor, though I've played at least two onstage, but at least that's the gist I think I got.

“They” take cells from my own system, process them, and put them back in. Shaken? Stirred? Don't know. Pros and cons? Yes. Since multiple myeloma is as yet incurable, long-term impact of any treatment is important. The oncologist here has set an appointment for us at the Dana Farber Clinic in Boston for mid-January with someone who specializes in the procedure.

I think I need to take a minute here to say that ignorance isn't always the wrong tool to use. Just sayin'. There was a time, for example, when, if my car started making odd noises I didn't understand, I just turned up the volume on the radio to drown them out... Okay, maybe not the best example. Things invariably got worse and cost more to fix.

Instead, let's say we're having dinner at someone's house, and they serve something exotic, but don't tell you what it is. They want you to be “open to the experience.” Fine. Turns out I like it, eat the whole thing. I don't then need to know it was iguana offal fried in wolf urine and covered in cow teat gravy. I don't. I just don't. Score one for ignorance.

Unfortunately... As fate would have it... Alas... Regrettably... As we began to consider the transplant, ignorance became the first casualty. It had to be done, but at least it was quick, though hardly painless.

As you know, I have kept my focus on my cancer, my treatment as guided by my doctor, and I'm still trying to do that. It's almost as if I'm in between doctors right now. I'm not at all, but my doctor is sending me to the Boston guy, so I'm thinking the answers are there.

It's probably just as well that there's little need for me to into specifics here; you may have noticed that specifics aren't really a strong point for me. Suffice to say, the transplant is a very serious procedure. It's time consuming, involves at least 2-3 weeks in the hospital, and the recovery can take months.

I won't know the specifics of my case until after we go to Boston. The information I've read seemed to discuss some constants, regardless of the individual situation. But, considering I found out I had cancer after being attacked by a swarm of wasps, I'm open to possibilities.

The one thing I do know about the transplant is this: If it can lengthen the time I'm in remission, reduce the amount of medication I need to take to stay in remission, sign me up.

This isn't really about life expectancy, by the way, because any number we put on that is just a number, cancer patient or not. It's like Spinal Tap's Nigel Tufnel explaining how all the numbers on a particular guitar go to 11. “Well. It's one louder, isn't it?” When pressed as to why he just doesn't leave it at ten, and make ten louder, his only response is, “These go to 11.”

I guess we all have parts of our past which we can describe as our Dark Ages. I certainly do and if all this had happened then, I would probably have joined my father and my sister Moira in giving up the fight because it “just wasn't worth it.”

Well, guess what? Somewhere along the way I lost my “give up.” I have a life I consider second to none. Frankly, I fought to get it and I'm surely going to fight to keep it. I'm just glad I don't have to do it alone.

So here's my current plan: I will continue to take this one day a time and try to keep my brain from treating a lack of solid knowledge about the transplant process as an excuse to party like it's 1999. (Yeah. I know. But you get what I'm sayin'. Right?) I'll let you know how it works out.

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, January 3, 2014

Heart versus brain? Better call for backup

People have been incredibly kind when commenting on my writing about my fight with cancer, complementary of my writing, my willingness to share my journey so openly, my positive attitude in battling multiple myeloma.

A lot of readers find something in what I'm doing that they describe as courage, but what I look at as faith and hope. Depending on your outlook, they're probably the same thing, and I don't suppose the label we put on it matters anyway. The reaction makes me uncomfortable, regardless. I certainly want to be able to help others; that was the whole reason for going public in the first place. I wouldn't want to take that comfort from anyone.

Through the years people have come up to me to tell me that what I had written was exactly what they were feeling and thanked me for helping them understand they weren't alone. Or something I wrote made them laugh and promise to take themselves less seriously. On the other hand, I came home one night to find a hand-scrawled note slipped under the door telling me if I knew what was good for me I'd better quit writing such crap (paraphrasing). I was I was also mailed a letter comparing me to Hitler and his henchman; didn't specify which one though.

Perhaps the most compelling example was back in New York when a woman I did not now came up to me while I was waiting in line at bank. She pulled what turned out to be a copy of a column I had written out of her pocketbook and handed it to me. She said she and her daughter were having issues, not the least of which was the mother trying to tell her daughter how she really felt about her. “Then you wrote this,” she told me, holding up the column. She cut it out of the paper and sent it to her daughter with a note saying, “This is how I feel.” The woman told me it helped to turn their relationship around.

I looked at the copy before giving it back to her. I didn't remember writing it, but that didn't diminish my gratitude at being able to help her. Still, I was young enough at the time that even as my lips were saying how happy I was to help her and her daughter, my ego was doing the happy dance, and yelling things like “Yeah, baby. You the man. You have the gift, the insights, the yackety, yackety, the blah, blah, blah, the ramalamadingdong.” Honestly? You gotta laugh. In truth, I hadn't a clue. There wasn't even a path to a clue from where I was standing. But, I've never been so sure I had all the answers, each one more fabulous than all the others that came before. I did say I was young.

Now, as I've written before, I find the whole thing humbling. Courage? There are so many times I sit down to share with you what I'm going through that I can't even find a path to courage from where I'm standing.

Most days since I found out about my cancer, I've put one foot in front of the other and plodded along, staying in the moment as best I can. It hasn't always been easy, but whoever said it was supposed to be?

But there have been times... There are just times when I feel overwhelmed by it all. When a friend of mine and I are faced with a difficult situation, we always say, “Shields up. Fazers on stun.” During the dark times, it invariably seems there's no power for the shields and I left my fazer in my other pants.

Thank the lord it doesn't happen very often. When it does, it's usually because all my niggling symptoms decide to quit niggling and start bludgeoning, all at the same time. My ribs hurt more; the pain in my sternum is worse; my stomach pain increases; the rash that is the side effect of my chemotherapy acts up; and so on and so on and scooby, dooby do.

The physical pain is bad enough, but it's my thinking that's the real problem. It becomes so black, so fast, that I'm powerless over it. Courage. Hah! I don't think so. In fact, when it happens, it makes me wonder if the positiveness and hope are even real, or if I've just been kidding myself. In my heart I know that's not true, but in any contest between my heart and my big brain... my heart better have backup.

Those are the times when having cancer, really, really, really sucks. Really sucks. Really. Sucks.

They don't last, these dark ages. Usually things begin to get better when I remember I can't think my way out of them; that I need to move a muscle, change a thought. If nothing else, moving, even if it's just from here to there, buys me time to get myself around other people. Fear doesn't do well in group settings; backup has arrived.

I know that I started writing about my cancer journey as a way to help me cope, and I would probably still be writing if I was the only one reading it. I'm glad it hasn't turned out that way because, I can assure you, any help I have given to anyone has been returned to me umpteen times. Not Sermon the Mount, loaves and fishes quantity. Let's not get carried away. But more than enough to get me up in the morning and give each day my best shot. That's more than enough, more than I would have ever thought to ask for on my own. Thanks.

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, January 1, 2014

Just another auld lang syne

Happy New Year!

As I looked back on New Year's past- how can you not when the next one is looming- I kid you not: I really only learned one thing that actually helped me at subsequent New Year's celebrations. The millisecond the midnight countdown hits one? Be sure you're standing up. Seriously. Stand up! If you are sitting, people are still going to want to hug and kiss you- it being the start of the new year and all- and if you are sitting, it means they have to lean over you to do so and they will spill their drink on you. This will happen as many times as it takes for you to spot the trend, which is often determined by how much you've had to drink.

Feel free to use this tip, though I'm guessing it's way too late to be of use this year.

Look, as holidays go, New Year's, can be okay. I think it's good that we convince ourselves that the New Year is like a giant do over. I mean that. No sarcasm. We get a fresh 365 days and the opportunities are endless. How can you not like an idea like that? I think it's especially helpful when, for whatever reason, we cannot find optimism in our own hearts. Some times it's just too tough. So why not borrow some? There's plenty floating around.

And, by the way, don't you think the optimism starts right at the stroke of midnight when party goers everywhere link arms and sing “Auld Lang Syne?” What does that even mean? I'm Scottish and I've always been a little vague on the Syne part myself. Auld is old, lang is long, you're on your own for Syne. I always take it to mean days past, as good a thing to sing in a new year with as any.

I think we invented New Year's resolutions as a way to keep our feeling of hope alive. After all, we get to start over. What better time to actually do some of the things we've been trying to talk ourselves into all year, or in some cases since our 2013 resolutions? Or 2012...

But when it comes right down to it, I personally put New Year's resolutions in the same basket as the Bucket List. If the subject of your resolution is important enough to make a new year's event of it, shouldn't it be important enough to take care of as you go along?

I admit to no particular science in the following theory. No poll data, no research whatsoever, just years of observing my own behavior and the behavior of others. But, that said, I would comfortably identify the three key resolutions, year after year, are: to lose weight, stop smoking and to stop/cut back on the use of alcohol and/or drugs. Of course, we all have personal demons we want to address and the resolve to deal with those would merit top priority. Generically speaking though, I think they would still top any national list.

Here's why I think putting something off until it can be made into a New Year's resolution can be worse than adding something to our Bucket Lists: it gives us the chance for “one last” which usually becomes more than one.

Allow me to speak from personal observation. I've struggled with weight issues most of my adult life. When I have succeeded in losing weight, I have decided to start on a Tuesday, or June 9th or now. If I waited until resolution time, I have invariably figured on “one last” pizza, before I started, cause soon... you know... I wouldn't be eating any. And, well, as long as I had a pizza, a couple of donuts would be good, cause soon... you know... And we have that leftover lasagna that shouldn't go waste and... you know. Well, there's nothing quite so motivationally crushing as putting on a bunch of weight when your head is full of diet. So, yeah, I guess losing weight can wait; that pizza tasted good anyway.

I can't really address stopping recreational drug use, but I do know that if I decided my resolutions would include stopping drinking alcohol, “one last” became, “I better rid the house of alcohol before New Year's Day, so I can start stopping,” cause soon... you know... No matter how much alcohol there was, drinking it reminded me of why I liked drinking in the first place. In that frame of mind, stopping seemed like a crappy idea. When I did stop, it was in the middle of winter on a weekday.

I never smoked cigarettes, but my dad and sister Moira did. They both died of lung cancer and were smoking until they lapsed into unconsciousness and death. They didn't try to stop all that often, usually only when they couldn't stand my mother's nagging anymore. I can tell you this, though, each decision to stop was preceded by smoking binges, cause soon... you know... Same with friends, especially faced with the New Year's resolution they had so hopefully committed to before the pain of stopping moved from the thought to the fact; from painless to painful.

Do I think people should stop making resolutions for the New Year? Why would I think that? If there is anything I've learned from 2013 it's that you have got to do everything you can to be positive; it's the best way to keep fear from messing with you. If a resolution helps you do that for days only, days only it is, and days matter.

So, how did Jim and Sheri spend this New Year's Eve? Well, for the first time in quite a while we were actually awake at midnight. Yeah baby! The Arnolds were awake... and watching a movie. We actually missed the whole ball dropping, Times Square, everybody dance now thing. But only by three minutes. Surely we get street cred for that? Madonna made a fabulous song out of four minutes. Anyway, we paused the movie and gave each other a big hug and kiss. Sheri looked me in the eye, and said, simply and as a matter of fact, not opinion, “This is going to be a good year.” I met her gaze, and said, as a matter of fact, not opinion, “Yeah. It is.”

We hope it is for you as well and lang mae yer lum reek.

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”