Monday, December 19, 2016

Sad isn't a four-letter word

I wish you a hopeful Christmas
I wish you a brave New Year
All anguish pain and sadness
Leave your heart and let your road be clear...
Hallelujah Noel be it Heaven or Hell
The Christmas we get we deserve
Greg Lake


As I sat waiting for Sheri to bring the car around following our latest cancer clinic visit, I tried to root out what I was feeling. Sad was the winner.

There's a lounge just inside the front doors of the clinic, with a fireplace and a piano, of all things, along with some comfy furniture. Now, I would normally have gone with Sheri to get the car, but we were at the end of a truly unpleasant session at the clinic. The temperature outside was frightful, and the fire was kind of delightful, which is a great line for a seasonal song, but not so great when cancer has you by the mistletoe and is making you break out in cold sweat after cold sweat. Single digits, the wind whipping and the day-long sweats had made my clothes damp and going outside into a completely unheated car would have been... well... bad, to say the least.

So, I was sitting there and the usually innocuous, constantly present background music happened to be Christmas, big surprise. Say what you will about Christmas music, it is not to be ignored. This was Bing Crosby, along with a number of collaborators, including David Bowie. And as I sat there and had a lifetime of feelings pass over me, I realized I was simply sad.

I wasn't upset about Christmases past, present or future. I wasn't longing for my two front teeth, and I wasn't remotely interested in a white Christmas. Chestnuts roasting on an open fire? Sheri made some of those our first Christmas in Maine. The fact that they were the wrong kind of nuts probably contributed to the note she left with them for me to read when I got home from work at the credit card call center around 2:30 am: “These are the worst things I've ever tasted. Ever. They're horrible. Try some.” I did not, but enough said.

And sad was okay. We'd had a couple of pretty rotten days to finish out a pretty rotten week in my treatment. With this new regimen I'm on, I have found myself actually throwing up at some point during the week. I hate that! This week, it happened to be Thursday night, just hours before we had to be at the clinic.

So, I woke up feeling less than stellar and... wait a minute... did I just see my breath?!? And am I very, very cold?!? It took a little while, but I made my way to the thermostat to register the fact that it was 53 degrees in our house on a morning when it was minus 7 outside our house.

We use a heat pump as our principal source of heat, which is fine. But they don't really work all that great when the temperature gets too far below zero. We know this. But it was the first night of the heating season when we should have set our furnace as back up. Set up? We hadn't even turned it on.

I must confess, I almost asked out loud if maybe, just maybe, having cancer wasn't enough of a challenge; maybe having to spend seven hours at the center with two different chemotherapies and a bunch of other poisons being eased into my system wasn't enough. Well, brothers and sisters, evidently not.

But, on a positive note, and I mean that sincerely, without a trace of sarcasm, the car started and we were able to make it to the clinic, cold though we may have remained.

Despite the best efforts of everyone involved in my treatment, the day was crappy. I kept getting cold sweats; hot blankets came and went; and I couldn't get comfortable, no matter what.

But, eventually the session ended and it was time to go home and I was actually okay sitting, waiting for Sheri, listening to Christmas songs and feeling a little sad.

This is our fourth Christmas with cancer. I always have to remember that I didn't think I was going to see one Christmas after the initial diagnosis and before we settled down to battle my multiple myeloma. So, I'll take a little sad along with the joy and gratitude that regularly fill our hearts.

You know, probably the best Christmas gift I could get is the one that just came to me while I was sitting here trying to finish this column: no matter where we are in life, or how hard things may seem... we just need to be brave a little bit longer... just a little bit.

Merry Christmas.

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

Sunday, December 11, 2016

The joy can be in the journey

When you take any journey in which you control the mode of transportation, you can experience things you wouldn't if you had to ask the driver to stop the bus, risk the fine for pulling the emergency cord on the train or just continue to look wistfully down from 35,000 feet at, say, where the World's Largest Ball of Twine is known to sit.

My daughters make the best of an average 10-hour journey to visit us by picking a web site featuring roadside attractions, many of them as simple as a business sign that catches their fancy, one like Mr. Peanut in front of Perry's Nut House just north of the City of Belfast, and visit as many of the gems they see as they can fit into their travels.

Maybe it's their recent visit that has me thinking of some of the things I've gathered in this three-plus years journey with cancer. Is that a forced comparison? You tell me. It's certainly something that I've been thinking about.

It could be it's the holidays that make you look back, not only at previous holidays and what was happening in your life then, but at the times around those mostly day-long celebrations.

Whatever the reason, I've been think about some of the things that I've noticed as I spent the past 1186 days with cancer.

First, although I am certainly more than a cancer victim, as I have pointed out numerous times before, it is almost impossible to have a conversation in which it does not come up, usually to the exclusion of anything else because cancer is a definite conversation shortner. Talking about it makes the vast majority of people very uncomfortable, and after a quick check-in to see how you're doing, they generally wander away as their most effective method of ceasing the conversation.

Chronic pain sucks. It doesn't even have to be really painful pain. When it is present every day, it makes it very hard to find positives in your life.

And finding positives in a journey like this is probably the one biggest find/roadside attraction you have to try to discover every day. The days you fall short on that need... it really doesn't matter if your cancer is in recession or has come back full blast,they aren't going to be good days.

People are going to want to show your their love for you , their caring and they're going to want to do things for you. You need to let them.

Communicating in relationships is even harder, and the closer the relationship, the more difficult it can be. Take my wife and me for example. We are both under a tremendous amount of pressure; she sees someone she loves in some state of physical disrepair everyday, while I have to watch her worry and stress over my failing health. Nerves are part of our physical make up and subject to damage just like any other. But how do you snap at a person who has cancer? How do you become short-tempered with someone who is doing everything in their power to help you though this horror? The very nature of the sickness forces us to be together, and under stress, a lot. For Sheri and me, we do the best we can and apologize quickly when we cannot.

And in a somewhat related item, I've found that having two spleens doesn't change the process of venting your spleen. Since one is comparable to the donut-sized spare tire most cars come with these days, you petty much move right though that. But, hey, maybe it replaces the time-tested count to 10 before you say something you'll regret. Maybe not. I'll have to do some research and get back to you, brothers and sisters.

Spiritual signs pop up all over the place. If you believe in coincidences, that might be what you see. I don't. I need to consider just two examples from the last nearly-1,100 days. I first discovered I had multiple myeloma when I went to my family doctor to check out some damage to my ribs that I thought was caused by an attack of wasps while I was doing some yard work. Nope. Cancer. And now for your consideration: a friend of my older daughter's is part of the team that has developed the amazing new treatment regimen that is the latest to be used on my cancer. Add the fact that the same daughter has another friend, working for a different pharmaceutical company that has come close a couple of times in a treatment for multiple myeloma and it pretty much, at least in my mind, rules out coincidence.

One last thing for now: cancer is everywhere. Maybe you need to have it to realize just how much you see it in real life, in the plot of virtually every TV show if it is on the air long enough, in books, movies... everywhere. So I think it becomes important that we keep hope everywhere. Miracles are happening and new treatments and cures are being found. So, let's keep the faith baby. The joy can be in the journey.

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, November 29, 2016

Look who's back, just in time for Christmas

Four in the morning
Crapped out
Longing my life away
I'll never worry
Why should I?
It's all gonna fade

Still Crazy After All These Years
Paul Simon

Hi. Remember me? I didn't die, or anything. Fatigue has just won the last few rounds of my ongoing fight against cancer.

The fatigue... weariness. You know it's nothing new. It's been a constant complaint since I got sick. I'm used to standing up to it and getting stuff done. Not much, perhaps, but some.

So, why haven't I written in weeks? Well, to be true, my fatigue has sucked any/and all desire out of me to do anything, and that includes writing. I just don't care to write... about anything.

I certainly have plenty to write about: another Thanksgiving with cancer; my daughters came to visit me for a few days, without the grandkids or family; my latest treatment. All valid and all things I've written about in the past, in one form or another.

This time? No thanks.

I think I might be depressed. I know what you're thinking... who wouldn't be depressed, given his circumstances. But it doesn't work that way. Justified. Not justified. Depression is going to make you weary and you certainly don't need to have a good reason.

This is about the fifth column I've started since the last one I wrote and I think I may actually have found the root of the problem. Maybe.

See, brothers and sisters, I'm in the midst of a radical new treatment for my multiple myeloma. It is pretty complicated and the medical staff and myself and Sheri are all finding out things about it as we go along. It involves heavy doses of steroids, which we all know I hate. We are through the first part which involved eight, eight-hour treatments, one each Friday. It took so long because of the number of medications I had to take before we even started, and then because we had to administer the principal chemo very slowly.

At this point, right in the middle of it all, I still go to the clinic once a week. One chemo is given intravenously and takes one to two hours, and the other remains a seven to eight-hour process.

And the things is... it's working very well. VERY well. Prior to introducing this latest therapy, my kappa light chain proteins had gone up month after month and showed no signs of topping off. After one session of this new treatment? Bam! They dropped from 72.1 to 1.01, startling not only Sheri and me, but the entire medical team working with us. The proteins have since been lowered to 0.69 which gives us all more faith in the results. Initially, it was sooooo startling, that everyone, and I mean everyone- except maybe Sheri, who is never so- may have been somewhat skeptical.

And, of course, that is all well and good. But... But... I remain fatigued, distressed and depressed, and here's why: with this treatment, we're winning the fight against multiple myeloma. No doubt. However, we are losing the side effects battle. I feel so poorly so much of the time that knowing we are managing the cancer seems to matter only a little. That's not really true. It does matter, a lot. But...

So, the days go by and I hope to keep up the fight; hope to get past the side effects and into reveling in the absence of cancer and the presence of better health. I think they call it hope.

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

Sunday, October 23, 2016

This whole quality of life thing is pretty tricky

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, and so it goes
And you're the only one who knows
Billy Joel


Sheri, my daughters Jennifer, Alison and Kristie and son Jason, and friends like not-his-real-name Walter having been talking a lot lately about quality of life in face of my new, groundbreaking cancer treatment.

Quality of life is just another one of those things I totally got wrong at the beginning of my treatments for multiple myeloma. If you've been with us since the beginning, you know I've been spectacularly wrong in a lot of my assumptions about having cancer.

Some were admittedly silly: being able to sense the cancer cells running around my body like Ms. Pacman gobbling up whatever it is that Ms. Pacman gobbles up. Some were probably overoptimistic. I thought my stem cell transplant would have had a far greater effect that it has done.

The truth is, though, that the transplant was a game changer. It hammered the myeloma pretty good and, if not for separate stomach issues, I would have been able to enjoy a few months' respite.

But the thing with quality of life... First off, I certainly thought it should be in capital letters- not all caps, I hate that- but definitely a Capital Q, Small o, Capital L, Quality of Life!

Big ticket items all around. Bucket lists, living every day as if it were my last, expressing the love I have for family and friends in big and important ways EVERY (O.K, there the caps seemed necessary) day. And perhaps that's the way it would have been if I had a definite prognosis with a fairly dependable date of expiration. I mean, if I was told I had six months to live and optimistically doubled it to nine to 12, I may have felt more of an urgency to do those things. After all, a prognosis is as apt to be wrong on the short side as on the long.

But, that hasn't been the case. From the very get go Sheri and I, and my doctors, both here and in Boston, have been adamant about the lack of a point in trying to figure out how long I would have to live with this multiple myeloma. They pointed out that almost every case of cancer is unique to the person who has it, and probably even more so with a blood cancer like multiple myeloma.

So, our considerations of the quality of life in our case slowly but surely started to shift. For me, at least it culminated in the past couple of weeks when two wonderful things made an appearance on our own time line.

First, Sheri and I celebrated our 20th wedding anniversary. Before we appeared before our family and friends to exchange our vows in public, our wonderful pastor insisted on meeting with us privately to go over those vows so we would be perfectly clear on what it was we were pledging one to another before God and our friends and family.

“When we're down there,” he told us (as I recall), “you're going to be so worried about not embarrassing yourselves, you won't really be aware of what you're telling one another.” It was a serious moment. I was actually taken aback with the weight of the decision we had made; the life we would be entering into. Brothers and Sisters, I had no idea.

In sickness and in health, good times and bad. Love and support and trust in God. Yeah, 20 years of that and then some. That decision, and that journey with Sheri, has made it possible for me to face cancer with the belief that the odds are in my favor.

The second big event was the initial results from my new treatment. After having gone up every month since December (remember up is bad), my kappa light chain protein numbers not only dropped, but plummeted from 71.2 to 1.01. Whaaaat? Everyone was shocked, including my primary care doctor up here. Since the procedure we're going through is so new, and there aren't a lot of documented results in my clinic, we're not entirely sure what it means. But, we do know it is wonderful. Amazing!

And this is when the switch in quality of life in our situation really meant became rock-solid apparent, once and for all. With two wonderful life events to celebrate, I put in one of the worst couple of weeks I've had since we began. The new treatment really knocked me on my butt and left me with very little energy to enjoy the grand things happening around me.

See, the side effects of treatment are really more of an issue most of the time, at least in how I feel on a daily basis, than the cancer itself. And, in the grand scheme of things, that's what the quality of life comes down to, isn't.

My one constant refrain when talking to Sheri about this is: I would just like to go to sleep at night, or during my daily nap, and wake up feeling not ill. Feeling good would be great, but for me, right now, quality of life comes down to not feeling ill, and even more so, not feeling so exhausted.

So in the meantime, the treatments continue and Sheri and I move through our 21st year happy to be together and sharing the vows our pastor made such a point of our understanding. Thanks, Bill (his real name).

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

Sunday, October 2, 2016

Oh, yeah. Happy anniversary

Lies that life is black and white
Spoke from my skull...
Ah, but I was so much older then,
I'm younger than that now”
Bob Dylan

Lost in all the kerfuffle around my latest treatment is the fact that it has been three years since I was diagnosed with multiple myeloma.

Actually, three years plus a few days, but considering the questions and mystery surrounding the initial diagnosis, three years seems like a safe enough anniversary to mark.

The beginning of a journey is always... well, exiting if nothing else. Somewhere in yourself, you know there are going to be highs, lows and middles. Whether it be something wonderful, like a trip to Disney World or some other long-dreamed of place; or merely mundane, though pleasant, like the annual visit to family around an annual event (reunion, Thanksgiving, etc.)... highs, lows middles.

As it begins, I think, as humans, we focus on the highs. Everyone on the trip will be on their best behavior, all connections will be made, and fatigue will be manageable.

In truth...not so much.

Still, when I found out I had multiple myeloma, a rare, incurable, but treatable, form of cancer, after the initial shock, it appears I decided to make the best of it. I mean, I didn't have a discussion with myself, nor did I confer with Sheri on whether or not to be positive, negative, fatalistic or what. I just decided to keep my oncologist appointments and do what came next.

Before I started “Finding the Pony,” I did some journaling, off and on, for the first few weeks. I decided to look back and found, as would be expected, plenty of confusion and more micro managing than I would have thought it possible for one man to carry. Every twitch of pain, every disruption of sleep, every doctor's visit was held up to the bright light of worry, scrutinized and assigned an importance it could not possibly hold.

Amidst all this flaffery, fluffery and over thinking, I even misunderstood what multiple myeloma actually was. Probably because it was lesions in my bones showing up on a CAT scan that was one of the confirming factors in my diagnosis, I thought it was a bone marrow cancer. Is there even such a classification? As we well know now, it is a blood cancer, and a tricky little bugger at that.

Despite all that there was the occasional moment of clarity: Oct. 17, 20013- So, I begin treatment in earnest tomorrow. I am more than ready. There is some trepidation about how tired and/or ill I may get, but I really want to start doing something about the cancer itself. So, let's go, right?” True dat.

And here we are three years later, still standing, still showing up for my oncologist appointments and doing what comes next. Like any journey, there have been highs and lows. In something of a reverse of what I wrote before, going into this I think I expected more minuses than pluses, more lows than highs, and yet, I can't say that's how it's been.

There have been far more many highs than lows. Through all the different treatments, and through all the different kinds of pain, there's been a focus to things in my life; a better, though not perfect, understanding of what's important, what matters and a willingness to accept the love people have been heaping on me virtually since day one.

Reading through the pages of my journal, I also found this, which, frankly, describes the most important thing I have learned in all of this: “Late September, 2013: Just looking back at the cards and letters Sheri and I exchanged when we first started going out... It was crazy, terrific and tough. But these, right now, are the days when love shows. Not just being sick, but growing older, sharing our latest fears and successes, loving our lives together. The beginning, when it was crazy, is not to be lamented. It was wonderful and difficult, and sooo worth it all... because we needed that to bring us to this.”

Happy anniversary to all of us. You have been an important part of my journey and I thank you for it!

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

Saturday, September 24, 2016

A long day's journey into night, three times, so far


This new treatment is a doozy. I mean, brothers and sisters, if this is going into the Book of the Mainenites, it's going to have its own chapter... maybe two.

It is pretty involved and new enough that even the nurses seem to be following the same sheet that we have at home. And it takes soooooo long.

It begins at home, early in the morning, when I have to take a large doze of steroids before we leave for the clinic. This week I actually forgot. Seriously. I'd called the clinic the day before to confirm that I could take them at home, and then... I forgot. Yikes. Fortunately, there was no big issue around that because I could take them when I got there, which I did. Good boy.

Then, beginning about 8:15 am, I have three medicines to be ingested an hour before we begin the treatment itself. So, we take those, and wait. Then, there are three more things to be taken before the actual chemo is begun. So, we do that.

Then we begin. We know it is going to take a long time because the insertion rate starts really low and then builds up throughout the day. Still, we're going, we're underway. But then, we're not.

We have to stop a couple of hours into treatment to add some more preventative medicines to the process. See, all of these things we're doing beforehand and now, during, are to cut down on the possibility of negative reaction to the chemo. And these are real concerns for truly bad things to happen. So, I'm all for using all the time we need and all the care we need to take.

Then eight to eight and a half hours after we've begun, we go home. And in the Book of Mainenites it reads, “And the man and and his wife were so glad. They would have looked for a fatted farm animal to sacrifice but that sort of thing had gone out of style hundreds of years before so they settled for being really nice to their cat.”

The days end mercifully soon after that because Sheri and I are both in my bed 8 pm. And sound asleep. And we do sleep through the night, except for a couple of cat breaks where Wolfie simply has to have some attention. He's been alone all day and has tried to let us be, but he just can't take it any more. So, we give him his attention and all three of us go back to sleep until a more normal waking time.

The first treatment took two days because of the sheer volume of chemo to be infused. We are now down to one day, and by the next couple of treatments, provided I continue to tolerate the chemo as well as I have been, we will be able to get it done much quicker, though it will still take three of four hours, I think.

The treatment is so new, so cutting edge, that we get the feeling that the medical staff and Sheri and I are going through it together. And we know there is no group of medical people we would rather be doing this with than the ones we have. There is not a large accumulation of anecdotal material and often we simply aren't sure of what's what. It's good to know that what we're going through is going to be of true assistance to people who come after us and have to take the same treatment. And we're doing pretty well throughout it all anyway.

At least at this point, I'm probably tolerating this better than anything else I've been taking. The fatigue I feel is extreme, but other than that... There is nausea and quite a bit of bone pain. But those are things I've been living with since the beginning. This is just a little bit extra.

There is something, though, that I haven't been able to put my finger on, that is, until I woke up this morning. When people ask me how I'm doing, I tell them what I've just told you. But that hasn't quite felt on the mark. I do feel much better than with other treatments, but... This morning I realized: my entire system is fighting multiple battles with itself in the common goal of beating this cancer. I am at ground zero in this war, and that's never a very comfortable place to be. I may have summed it up best when I said to Sheri, “I just don't want to feel like this.”

And it's as simple as that. It's not an especially bad feeling though it certainly doesn't feel good. But, turning again to the Book of the Mainenites, it's just time to do some smiting and being thankful. And maybe there should be a bit about pulling on my big boy pants. Not very Biblical, I know. We'll have to see.

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, September 12, 2016

OK. So what we need is a different new plan

Yes. I did ask for a plan. Yes. I did say that being able to fight back was better than having to sit and have cancer knock me about. Yes. I did say Sheri and I would be ready to go and tackle my multiple myeloma again, if only we had a plan.

Well. It would seem that there are plans and then there are... plans. I figured our plan would be more of the same. I thought we'd take the medicines we've been using and tweak them into a different order and strength. After all, that's what we've been doing.

I wasn't prepared to have to toss aside what we've been doing, almost completely, and head down a different road; in this case, the road less taken. The treatment that makes up our new plan is really new and pretty cutting edge. Obviously, that's a good thing, but the process is very involved and means spending quite a bit of time in the treatment chair.

I admit that I've been spoiled. Since my stem cell transplant, I've been able to take my chemo and other medicines in pill form, at home. When they made me sick, I was right there ready to lie down at any time and throw up in bucket of my own choosing.

In the immortal words of the not-so-immortal Mary Hopkin, “Those were the days my friend, we thought they'd never end.” Yeah, well...

The new plan calls for, six (maybe five) medicines to be deployed before I take the chemo itself, and more steroids for two days after. The first course needs to be given over two days; about five hours the first day and two to three the second. The whole process includes a high volume of steroids which WE KNOW make me very uncomfortable, in fact borderline crazy. While I realize crazy is not a medical description, it is certainly less offensive than bats**t which probably better describes what happens when I take minor doses of steroids, let alone the copious amounts I have to take with this new plan.

I have to take the majority of the medicines while in the clinic because of the worries over side effects. The main concern is something called infusion reaction; that is, reacting badly at the site of, and because of, the infusion itself. I have had an initial bad reaction to everything I've been given through this fight. I think being in the clinic at time of insertion is just what the doctor ordered.

I have to say, this is the most nervous I have been in a long, long time. While I know a lot about the treatment, I don't really know what it is all going to mean to me. Also, it is a whole different approach. Previous treatments I've endured have been aimed at attacking existing cancer cells. This new one seems to be inserted at the DNA level to boost your own immunize system to put up the fight. Now, is it just mean, or does that sound worrisome to you?

In the somewhat limited use the drug has had, it seems to be very successful, so we've got that going for us, which is nice.

But, here is a partial description of the drug's mechanism of action: “This is an IgG1k human monoclonal antibody produced in a Chinese hamster ovary cell line.” Take a second and think about that. Not just a hamster, but a Chinese hamster. Maybe Chinese hamster is like a “wink wink” so that competing companies are thrown off. Maybe it actually means a hamster taken from Bob's (not his real name) Pet Store.

I have a tremendous amount of respect for the people who work so hard in cancer research. They are fighting to save my life. There aren't words, not in my book anyway, to say how much that means to me. But at what point do you look around the lab and say, “Hey. That Chinese hamster in the corner! Let's give her a go?”

I expect the treatment to begin this week, although it may be hard to put two consecutive days together, we'll have to see. But this whole treatment alternative has me on edge, thrown for a loop and any other similar cliches you wish to bring to the game.

I will say this, and it absolutely true... you can look it up... On top of all this, I have to at least save some concern for the fact that game wardens have been trying to catch a bear (brown, I hope) that has been roaming our town for over two months. How's that for a line of concern: a Chinese hamster to a Maine brown bear? You gotta laugh.

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, August 26, 2016

O.K. So what we need is a new plan

So, this is how it is now.

The new form of chemotherapy that has been added to my regimen made me sicker than ever this time. I was laid flat from mid-afternoon Monday until early Tuesday evening.

It was very unpleasant. I slept off and on between bouts of being sick, and even the sleep was filled with bad dreams that made little sense, but left me feeling worse all the same.

While this has been going on, we wait for the results of my blood work. Specifically my light chain proteins to see if the wretchedness I feel has some value if the number has dropped.

Wednesday morning the doctor's office called to say that not only had the number gone up, but it was the highest single spike since I went out of remission. It went from 38 to 58.6. As I've said before, I don't really know what the numbers measure, but I know that having the number increase is bad.

And now the waiting revolves around what we do next. I was hoping we would discontinue the new drug because even if it had brought the number down, I wasn't sure I was going to be able to deal with the side effects on a regular basis. The doctor wasn't sure he wanted me to do that either.

Sheri and I confess that the news is distressing, but what is there to say, really? Yes, the fear is ratcheted back up again, but... We always do better when there is a plan. Being fearful and worried is unavoidable, but focusing on it generally just makes us more of each.

But, when we have a plan to knock the number back down and get back on top of this? Yes, the numbers for the moment remain unchanged, but hope and faith are better to focus on. Besides, doing something is almost always better than doing nothing.

As I consider exactly what it all means, I realize that my thinking has once again undergone a shift. What I'm about to write may be a bit much for you, but it something I need to say out loud. Why? Because I have always written what I need to write.

Understanding that death and cancer go hand in had doesn't make any of us akin to a rocket scientist; even in this day and age when being told you have cancer is no longer like receiving a death sentence. Heck, when I was undergoing the CAT scan that determined I had multiple myeloma, the technician said, “Even if you have it. Cancer is no longer a death sentence.” 'Nuff said.

But what about dying of cancer? To be cold and clinical, what about the process? Multiple myeloma is a tricky little spud. Yes, it attacks your immune system. But what does that feel like, exactly? I just went through a horrific period where I had an infection that almost put me in the hospital. Is that it? Is that what will happen?

And, yes, it attacks my bones and can create lesions. My bones hurt quite often, that's for sure. But do sore bones kill you?

And then there are the proteins which can lodge in any of my major organs. What is that like? Have I already experienced it and didn't know it?

As I've written before, bar being hit by a bus or any of the other deaths we're all susceptible to, it's most likely I will get some kind of infection that I won't recover from.

One of the things I feel grateful for is that I am very unlikely to keel over someday. Maybe I'm wrong, but I feel, no matter what, I will have time to deal with it all. People with severe heart conditions and/or stroke issues often aren't as fortunate.

So, we'll wait and see. We'll find out what the next plan of attack is and get after the disease again. It's what we do in our house... in our home.

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

Sunday, August 21, 2016

Sorry I haven't written lately

I hope you haven't been too concerned about my unwriting over the past few weeks.

The truth is, I've started numerous columns only to stop and put my head down on my desk, moving a clutter of papers I'm supposed to attend to to make room.

In early September, I'll mark three years of living with multiple myeloma. Three years is a long time to be tired, concerned, fearful, hopeful... a long time.

I am tired. At some point I have transitioned from the thought of dying from multiple myeloma to coming to grips with living with it. The difference is huge. Living with it means constant adjustments. I need to monitor my system every day. Is that a new pain, or the return of an old one? Is that twitch multiple myeloma or being age 67? What are these marks that keep appearing on my skin, seemingly out of nowhere?

And my wife Sheri has to endure the same sorts of things. She sees all these impacting my overall health and she can't help but worry about what's going on. Three years is a long time to watch someone you love get sicker and sicker.

Even my doctors are having to adjust my care plan as we go along. My light chain proteins (remember high numbers are bad) have continued to increase, albeit in relatively small amounts. We have brought in a powerful, somewhat new chemotherapy to add to the Revlimid mix I was already using. To say it has kicked my butt would be a vast understatement. The drug is called Ninlaro and it is a very small pill, but doubting its impact is impossible. I keep throwing up after taking it. I hate throwing up, but there you are.

We haven't really gotten a good read on my protein levels since I started taking it, but we have already reduced the dose because of how sick I was after taking it.

Humorous (I hope) aside: The first time I took it, our cat got out of the house for the first time ever. Yikes! I was, literally, in the middle of throwing up, when I had to join her efforts to get him back. So, there I was calling his name, throwing up on the neighbor's lawn, and then calling his name again. Repeat.

In the end, it seemed he really didn't want to be outside any more because he ran up on the porch and waited for Sheri to open the door to let him in. Hahaahhahahahaha. No. As the professional patient I have become, I finished throwing up outside- on our own lawn this time- and went back in the house.

Right now, my whole situation seems like a mess. We are using the chemotherapy to hammer away at the myeloma, but, given the nature of the beast, we are also hammering away at everything else. A couple of weeks ago, I came down with an infection and almost ended up in the hospital because of it. My white blood cells were so low, it seemed like the only thing to do was to put me in the hospital to monitor my counts and knock back the infection.

In the end, my doctor decided putting me in the hospital as a response to a possibly worsening infection didn't make a lot of sense. Let's face it? What is a hospital full of? Right. Sick people, many of whom have infections just looking for the opportunity to join with all the other things I'm currently fighting.

So, he ordered antibiotics and they seemed to do the job. Mind you, I still have a cough, but we're now calling that a summer cold.

So, I haven't written lately because I just haven't had the energy. The columns, for whatever reason are no longer being run in the local newspapers, so I don't have the added burden of trying to meet a deadline, which makes it easier to yield to the complete lethargy I feel virtually every day.

But here's the thing... It's not my ego speaking when I say that I know you worry about my health. When I don't let you know what's going on, how can you help but think the worst? And while it's true things have not been going well, there is certainly a big “worst” hanging around.

So, now that I have begun again, I will try to keep you up to date as I have done over the past three years. Who knows? I may even return to my old snarky, sarcastic self. Hey, it could happen.

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

Saturday, June 25, 2016

I left the room and the next thing I know ...

First, let's see if you've been paying attention. Last time I wrote about Kappa and Lambda light chain proteins.

At my clinic visit this week, I found out that the light chains are going back up; this time from 18 point something to 21 point something else. Now, light chain proteins going up are a) Good; b) Bad); c) What's a light chain protein?; d) I went out with a Kappa Lambda in college.

I know most of you got it right. The number going up is bad, especially since the medical regimen I'm on right now is making me feel poorly, as my Aunt Jessie used to say. I mean, it's one thing to feel tired and kinda nauseous all the time when you are having some success, but another thing entirely when what you're doing isn't even working.

So, we had something of a group meeting about it when we were at the clinic. Interestingly enough, I missed it. Sheri had arranged to talk to our oncologist in Augusta alone for a few minutes at the end of our session. During the visit, we had discussed a number of options and agreed our doctor would contact the Boston oncologist who is really the big dog that oversees my care.

Well, I left so Sheri and the doctor could talk. Never being one to let things wait, though, after I had gone out to the car to sit and wait, our Augusta doc got on the phone with our Boston doc and the two of them, and Sheri, were able to discuss what to do next.

Do you think I should have felt indignant at having been left out? Remember, these are the three people in my life who know as much, and in some cases way more, about my multiple myeloma than I do. So, why would I feel indignant? I was just impressed that no time was being wasted and we had a solution in place while I was sitting sipping Sheri's cold coffee in the car while working on lies to tell her about how I actually hadn't been drinking her coffee. She does not like ANYONE messing with her beverages.

So, here's where we are now. I'll continue to take the chemo and dexamethasone as I have been, but we are going to add another piece to the puzzle: Velcade, which is the first therapeutic proteasome inhibitor to have been tested on humans, an explanation which certainly comes from the “aren't you glad you asked” department.

I have actually been treated with Velcade previously. Before my stem cell transplant, it was added to the mix I was taking at the time. At that time I took it through an IV, but this time it is going to be in some sort of capsule form. I prefer the capsule, mostly because an IV means sitting in the treatment chair for about two hours, between getting it set up, getting me set up, administering the Velcade and detaching after we're done. The other way, I just take a pill, Jill, and I'm done.

I won't start the new protocol for another week, so we'll see how it goes.

In the midst of all this, I found myself thinking about my daughters, Jennifer, 47, and Alison, 44. They live quite a distance from here, so most communication is by Facebook, email, or phone.

When I first found out I had cancer, one of the tougher things to be done was to get on the phone and tell the girls (don't care how old they are, girls is what they will always be to me) to tell them. At that point, I said I would never evade the truth (also known as lying) as far as my health goes. Good or bad, I would let them know.

And that's what's happened, But Sheri noticed that as I was avoiding whining and complaining about my health, I wasn't painting a totally accurate picture for Jennifer and Alison.

I thought about that, and saw she was right, as she so often is. So, when we talked on Father's Day, I took the time to tell them that I hadn't been feeling good and that I was tired all the time. I also broached the subject about quality of life. Look, I'm not on death's door by any means, but I do have to make decisions like the one we just made about the latest treatment plan.

We had a really good conversation and I think they probably have a better handle on how I'm doing: good, but not great.

So, now we all head into this new round of treatment aware of the situation that we are fighting and what to look for in the results. Remember... light chain proteins up... what is it brothers and sisters? That's right, bad. Now you have all you need to know to track our progress. Good job.

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, June 16, 2016

Speak American, would ya!?

Two months after my 18th birthday, a college friend helped me land a job working for a very, very, very rich woman at her sometimes summer home in New York's Adirondack Mountains.

My principal job there was as a houseboy. Yeah. Really. Myself and another 18-year old worked seven days a week; both of us in the morning, alternating afternoon and evening shifts the rest of the time. The two of us were part of a very large staff, most of whom traveled with the woman to her homes throughout the world.

The staff was comprised of other people from Scotland, as well as England, France, Ireland, Germany and Norway. When we all sat down for supper, an interpreter was needed to help the conversation flow. Well, we didn't have one, but, at least back then, my French was pretty good, so the job often fell to me. The fact that I had only been in the country for about four years, also meant I was used to working hard to have people understand what I was saying.

On the plus side, everyone tried to talk at the same time and no one really cared what anyone else had to say, so I didn't have to be too accurate in my interpretations.

I got to thinking about this the other day when I realized that having cancer meant understanding the language of medicine as it applied to my disease. Multiple myeloma was my own particular dialect.

There are so many terms and names that I have had to develop an at least passing understanding of, so that I might converse with the medical staff in a manner helpful to us all.

First off... I had never heard of multiple myeloma until I had it. As I've said here before, cancer is an almost universal disease with very few families untouched by it's reach. Still, only one per cent of cancer sufferers have multiple myeloma, so there was work to be done before I even knew what it was I was suffering from.

Then there was all the new medicines I was given, over a dozen of them, some of them designed to help me tolerate some of the others. The biggest challenge was in ordering refills. Normally, faced with a situation like that, I would approach the glass the item I needed was kept behind and point. Not an option in this case, obviously. I did learn that most of them had common names, or “other” names, which were easier to use, which is what I did. I also learned to order refills by the number on the bottle. Dead simple.

As part of the stem cell transplant process, I was treated with a number of chemotherapy solutions. Since they were each designed to kill my immune system, I was less worried with what the names were than what, exactly, kill my immune system meant. Well, it meant... kill my immune system. Rather than worry about the names, each time one came up as a topic of discussion, I just asked, “Will this one make my hair fall out?” Eventually, the answer became yes.

Then there was the apheresis machine which took the blood out of my system, removed the healthy white cells and then put it all back. Well, put the healthy cells where we needed them and put the rest of the blood back in my system.

And the Hickman line, which was surgically placed into a large vein near/in my neck and was used to draw blood and give fluids or medications. It came to be one of my favorite things (though impossible to work into the song) because it saved me from having countless numbers of IVs put in. Since there were times when I had upwards of five lines attached at one time, you can, perhaps, see why I loved it.

The surgery to put that line in was the only actual operation I've had and it provided one of the unintentionally funnier moments of the entire journey. As I was recovering from the mild anesthetic, I heard someone say, “Great. You really killed that one.” Though I quickly realized it was a surgeon talking to a would-be surgeon who was learning the process, it did give me the chance to make suggestions on improving operating theater verbiage.

The bottom line, I guess, is that I have become fluent in speaking cancer, or at least the multiple myeloma dialect. Wow. My mother was always touting what I could have been if I'd only applied myself. Well, she should see me now.

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

Friday, June 10, 2016

A cat of nine tales



There are times, as I know you know, when I just become sick and tired. Sick and tired of feeling nauseous. Sick and tired of being unable to be all that I can be. Sick and tired... of having cancer.

Yeah, and here we are again. I had a bad day yesterday which turned into a bad evening. It was one of those times when I can't even explain what the problem is. I know there is a problem because I feel wretched. Is it mental, though? Physical? Both? Something I haven't even put words too yet? I do not know.

What I do know is that I feel... defeated, is as good a word as any. I reach for one of my tools to adjust the feeling, but it's... it's like the problem is metric and I have a box of standard tools. They can come close to fitting the problem, but in cancer, close isn't nearly enough.

The problem was made worse by the fact that Sheri was out of the house fulfilling a commitment she made to a social group we belong to. That left just me and our cat Wolfie to fend for ourselves. He quickly realized I wasn't going to be any fun and trotted off upstairs to take a nap.

So, there I was, alone, trying to find some way to occupy myself since that's the only way I can get relief when I feel the way I did. Most of the time, watching soccer on television will do it, but the only game of any interest at all was Brazil v. Haiti. Which was pretty much like watching the opening scenes of “Jaws” with Brazil as the Shark and Haiti as the Girl Who Goes Swimming.

On top of everything else, I was cold. Now, cold is an almost constant state for me since I got sick, but usually I am able to warm myself up. Not last night. I could not get warm until... One of my periodic hot flashes decided to take the stage. But even that didn't help much. It certainly didn't last.

I did pick up a book I'd nearly finished and that helped some and then Sheri got home.

As I watched her shuck off the bits of her day in the outside world and settle into the comfort of our home, I felt gratitude flood over me. Yes, at first I thought it was another hot flash, but it wasn't. It was gratitude. I was grateful that I had someone to be connected to through all of this. I thought about people I've talked to and heard from who have to face their challenges, be they cancer or something else, alone. Yes, they have doctors and others, but when the demons come to fill the empty spaces in your day, when it becomes a case of you against them, being alone must leave you totally over matched.

I have learned that sometimes going to bed is the best solution, especially if you're as tired as I was. So, that's what I did. It was barely dark outside, but I didn't care. I just wanted to not feel like I did any more.

It worked as I quickly fell asleep and didn't wake up till about 6:45 am. As is my custom, I took a quick inventory of how I was feeling. Gggggrrrrr. No change. In fact, if anything, I felt worse. The pain in my stomach was horrible. I tried to look past the pain to see what the rest of the day could bring. Nothing. The time in front of me seemed completely empty. And, in truth, that scared me more than anything in a long time. Empty is bad. Worse than that, as I lay there, it seemed unfillable. I had my pain and a whole lot of nothing. Before I could get my self pity in high gear though...

The first sad, longing, needful meow of the day came from the doorway to the bedroom. Wolfie was back and ready to have his breakfast served to him. Here's the thing- That cat has come to rely on us to take care of him, and not just when we feel up to it. So, I got up and gave him his breakfast and went back to bed.

A few minutes later... He wanted the side door opened so he could look at and see the critters in the yard. Done. Another few minutes later... I needed to put out bird seed on our feeding table so that the squirrel, chipmunks, birds et al would come to feed and he could watch them coming and going.

Well, by this time I figured I might as well get up. I realized that the day ahead was no longer empty. It had already been filled with quite a bit of activity. Saved by the cat.

Life, huh? You never know where the light is going to come from, do 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

Thursday, June 2, 2016

Ups bad, downs good, kappas rule

The story's in the past with nothin' to recall
I've got my life to live and I don't need you at all
The roller coaster ride we took is nearly at an end
I bought my ticket with my tears, that's all I'm gonna spend

The Cyrkle

I had been in this country only a few months and I didn't really know what a roller coaster was. It was sort of like when I took my first spelling test in an English class in this country and was asked to spell sophomore. Spell it? I had to ask what it was, much to the amusement of my classmates especially since we were all in tenth grade at the time.

So, just a few months later, the opportunity came to ride a roller coaster, I wasn't about to ask questions. I mean, this was 1964, so it wasn't much compared to what a roller coaster is today, but still... It was very high and looked scary. Questions might have been good, and I might even have asked one or two despite the sophomore fiasco, but, just a day or two after the spelling test, we had a quiz in health class and were asked to name a poisonous American snake. I knew it was cotton something, but classmates' laughter told me it wasn't cottontail. Oy.

The roller coaster... My friends said I should sit in the very front of the very first car because it would be less scary. Right. That wasn't true and the ride I took explains why the sum total of all the roller coaster rides I have taken in my 67 years is one.

It's ironic, then, that I've been thinking of my experience with cancer as being a roller coaster ride. How would I know, right? One experience does not an apt analogy make. Well, I've never been to Hell, but when people use it as a measure of how hot it is, I get the idea.

I suppose it's egocentric to talk about my cancer as a roller coaster ride. How often have you found yourself in situations where you're on top of things one minute and at the bottom shortly thereafter. I mean, that's life, that's what all the people say, riding high in August...

I hope you'll indulge me, though, in my use of the analogy. It's just so apt. If I were to chart the peaks and valleys of my nearly three years with multiple myeloma, joining the dots would create a pattern that has been typical of roller coasters since the country's first roller coaster ride opened in Coney Island in June of 1884. (I actually looked this up. It went six miles an hour and even I may have been tempted to pony up another nickel to ride it a second time.)

As I've mentioned before, one of the key measurements of the state of my cancer is something called kappa light chain proteins. Since December mine have been going up. The increments have been small, but consistently higher than the month before and, in this case, up is bad.

Let me pause for another bit of irony. In college, I did not pledge a fraternity nor did my academics earn magna cum laude nor summa cum laude status. Greek letters were nowhere to be found, though, as I think I've mentioned here before, I did graduate laude how cum. But I don't think that counts.

And, now, here I am tracking my kappas like my life depends upon it, which I suppose it does,

The last time I was at the clinic, the people who care for me and I were discussing changing my treatment because it wasn't knocking the kappas down. So... roller coaster alert... it came as yet another surprise that my latest blood work shows they actually have gone down. Granted, it was only from 20.5 to 18.3, but still... down is good. Eighteen point three whats? I don't quite know, but like so much of all this, I don't have to. I just need to know that up is bad and down is good and there you are.

So, are we going to change my treatment plan? Don't know. It is having a positive impact, but the chemo leaves me feeling really tired and often nauseous and the question becomes - is the latest impact enough to make feeling ill worth it?

Don't know that either. It's a roller coaster ride for another day, I guess.

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, May 26, 2016

A farewell to arms

Regular readers have often been asked, by me, to be arbiters of taste, mine. And here we are again.

Sheri and I were outside with our neighbors Harold and Sue (their real names) contemplating the demise of some groundhogs who had wrought considerable destruction on our gardens. It was twilight and mosquitoes were out in full force. None seemed to be biting me and so I asked, “If I have a cancer of the blood- which I do – and a mosquito bites me... is the joke on it?”

Not only did I think it was funny, I thought it was a valid question. My wife feigned outrage, although it might not have been feigning. Sue laughed and Harold was not around for the conversation. So, that wasn't much of a sample.

My wife said “only you” would say something in such bad taste, but she says that a lot so it doesn't have the impact you think it might. It's funny, right?

Whether or not you find that funny, last week marked another landmark on my journey through recovery. I had my final replacement immunizations which were the last step in the lengthy stem cell transplant process.

The bulk of the work was done in May 2014, but, since the transplant wiped out my entire.... entire immune system, I needed to have all my childhood vaccinations done again, along with some adult ones. Due to necessary time frames between injections, it took 18 months to complete. So, yes, I had the final appointment on my calendar for almost 18 months.

I have said before that I am not always the go-to person around my disease or my treatment. Tell me when, tell me where and I'll be there. A Reader's Digest condensed version of what the treatment will be is nice, but, as anyone who has compared the RD version of a book and the book itself will tell you, much is left out.

Anyway, I showed up the other day to get my final shot, which I knew was for rubella, measles and mumps. I knew that because I read of occasional outbreaks of these diseases and it worries me to have any of those in my golden years. But... Reader's Digest alert... much had been left out. I was actually supposed to get six shots. Six shots. Six. Shots. Oh, man.

When I was first diagnosed, a friend of mine, we'll call her Megs (not her real name), in a completely unrelated Facebook post, wrote that she'd had to have a shot that day and it had completely unnerved her. She hated getting shots and even the thought of them really upset her. Without thinking, I typed, “Geez. Don't get cancer.” Relax, I didn't send it. That would have been bad taste.

But still, it was moments like this I was thinking of. Especially in the beginning, every health professional I saw stuck a needle, or more than one, in me. You do get inured to it, but still... six. Oy.

Anyway, I got my six shots and they were very professionally administered, three in each arm. There was tetanus, rubella etc., pneumonia, and some others. And that was that. Stem cell transplant successfully completed. I did feel bad that my cancer had returned before the entire process was done, but that was an oversimplification of the event. The shots were technically the end, the practical conclusion had come when the last of the restrictions on my lifestyle (eating soft ice cream) was removed, which was after about a year.

Of course, it was only a matter of time before the shots began to create some discomfort... My arms hurt, So, I turned for succor to the fountain of succor in the Arnold house, my wife Sheri.

“My arms hurt.”

“Yeah? Well, you better pull your big boy panties on and deal with it.”

She was kinda joking, but she's had Type One diabetes for over 22 years and in the course of that time she has given herself thousands of shots, many of which hurt. So, there was more than just a touch of “get over yourself” in her jest.

So, I didn't say too much more about it, which was fine. Until I was lying in bed that night and realized I really couldn't lift my arms very easily, or quickly. The thought occurred to me that if someone broke in and told me to raise my arms or I was a dead man, my only option would have been to sing a rousing chorus of Woody Guthrie's Dust Bowl epic, “Goodbye It's Been Good to Know You” in farewell.

True story.

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, May 19, 2016

A big brain is a terrible thing to waste

Yeah. So I had coffee with Not-His-Real-Name Walter earlier this week. Please note that this is not something I do just so I may enjoy a delicious beverage..

See, Not His Real Name has a big brain, as do I. When put together, conversation generated can be upsetting to the casual observer. One of the saving graces. Though. is the fact that Walter's brain is more developed and has a greater capacity towards improving the common good. He reads actual magazines, news magazines, as opposed to those exploring and exploiting pop culture. Me, I don't read magazines unless I'm stuck somewhere waiting for a doctor, lawyer, car mechanic or some other who tries to distract you from the amount of extra time you are having to spend waiting for them.

Walter also makes daily visits to web sites specializing in presenting the latest news, usually accompanied by analysis designed to spark discussion. My favorites list is scattered with sites like where levels of sweet and cute can become dangerous to the health of any diabetics who may stumble onto them, and where serious discussion, if there even is any, will invariably swirl around the merits of dogs v. cats and which make better companions.

The fallout from these differences means that if Not His Real Name and I are going to have a serious discussion about a serious topic, he's going to have to take the lead.

Take the other day, for example. He brought up the topic of man's inability to accept that, at some point, he is going to die; that our instinct for self-preservation is driven beyond all logic. By and large, he said, we will fight like the dickens to avoid talking about death, thinking about death, or dealing with death in any way, shape or fashion, even though, on some level, everyone knows they can't avoid it.

“Watching people deal with it,” he was saying the other morning, “is a lot like watching someone living in a house that's on fire and hearing them say, 'Yeah. I know the house's is on fire, but don't you think a new sofa would look great over there? What about some new drapes?”

It becomes a case where something important, nay essential, that is, our desire for self-preservation, actually becomes a bad thing if you think about it. Time we could spend making a logical transition from robust youth to a necessary older age is wasted on nostrums and schemes designed to keep us feeling young, or at the very least, convincing those around us that we're younger than them.

Now, this is where Not-His-Real-Name-Walter's big brain really rises to the fore. Just as the self-preservation battle is reaching a peak such as only a serious physical break can slow, we're given this sort-of aging blanket that covers us and forces us to look at and accept certain things at certain times of our lives.

Under cover of the blanket, we see we can't run as fast as we once did, let's say. We still carry on the fight for self-preservation, but with one less tool. Then maybe we realize we need to take more naps. Arthritis tosses its two-cents worth in to make it more difficult to open that jelly jar lid. And so on.

The fight continues, but as all these little bits and pieces add up, we begin to see that maybe, just maybe, letting go a little wouldn't be so bad; acknowledging that there will come a time when death isn't necessarily the horror we've believed it to be all these years.

Now, this blanket has great value when you're able to start using it at the correct point in your life. For it to produce the desired affect, it should be mid-70s or later, when the parts that aren't working as well as they once did begin to outnumber the parts that do. Makes sense, right? Who wants to jump out of bed first thing in the morning yelling, “Hey. It's raining! I get to battle the arthritis in my knees today!”

So, the fight for self-preservation and the aging blanket become two essential tools in finding comfort as you grow older and move towards the inevitable “you know what.”

But, as Walter is apt to do, he points out that people like myself... those with a major disease that aims to cut my life short, don't really get full advantage of the aging blanket. My aches and pains haven't reached anywhere near critical mass; not even close to the point where there can be comfort waiting along the road that leads to the end.

Unfortunately, that's as far as our discussion got: seeing the issue, but not the solution. Still, as long as he continues to visit cool web sites, progress can be made. At the same time, I can spend my time watching cute cat videos to keep my mind off things. Then we can get our big brains back together and see how far we can go the next time. Stay tuned.

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

Wednesday, May 11, 2016

Hope is just a doggie in the window

Here's what was going through my head as I was waking up the other morning: How much is that doggie in the window, the one with the waggly tail, how much is that doggie in the window, I do hope that doggie's for sale.

Yeah. Welcome to my nightmare. If you're a certain age, you doubtless remember Patty Paige's hit version of this song in early 1953, the one that sold over two million copies. If you're of a different certain age, you likely wonder why a song about a dog for sale in a window could ever be a hit record. Well, it was. You can always bring it up when someone older than you is telling you your music is rubbish and how stupid a certain lyric might be. the...window.

As the endless repetition of the song through my head was finally winding down, I was actually left with … hope. Why did that linger when the rest had gone? Beats me. I really don't like thinking too much because odd things like this are often the outcome.

I will say, and maybe it has something to do with all this, since the first day I learned I had cancer, hope has been an essential part of my journey. It has been one constant in an otherwise muddled and sometimes frightening path.

When you're told you have an incurable, but treatable, form of cancer, it wouldn't surprise you to know that you immediately start hoping for the best, right? I mean, it just makes sense. And that's what we did,

Then, as we moved through all the treatments and medicines, hope remained in the foreground. When I was told the initial treatment would be chemotherapy in pill form, it made little sense, given what I knew about cancer. However, given that I knew next to nothing about cancer, it quickly became apparent that that was how it was going to go. I hoped that it would work, obviously, and to a certain extent, it did.

Then came the stem cell transplant. If I knew little about chemotherapy in pill form, I can assure you, I knew even less about a stem cell transplant. What the heck was that deal? Again, it was time to drag hope into the picture and throw it at this procedure and wish for the best. Again, the treatment was quite successful. It was a lot to go through, and involved many moving parts, and arduous days for both myself and my wife Sheri. But in the end, hope had its day and we beat the multiple myeloma back.

But now, it's making a return engagement and we're back to trying to knock it down again. Hope? Yeah, we could us some.

This time though, hope almost seems like it came be one of those four-letter words. You know, the kind you need the upper case keys on a keyboard to be able to use in a family setting: s#*& or … well, you know what I mean.

Maybe it should be spelled h%&*, or h&p*. I'm finding it hard to hope right now, at least in part because I'm not sure what to hope for. Yes, yes, the big picture: knock the myeloma down again, get back into being free of its more obvious effects. Right. Of course. But there's more to all this than that one big picture.

Daily, you need to be able to find things to hang on to, look forward to, feel good about. You have to be able to hope that this afternoon will be better than this morning and this evening will be best of all.

Many mornings, I wake up and find that I feel okay. But, as I get up and start moving through the day, I begin to weaken; to feel sick and/or tired and don't know what to do about it. Hope sort of turns on you and gives you a false sense of what your life is today. At times like that, I suppose giving up would be one thing I could do, but it isn't an option. Lost as I sometimes feel, I need to keep going, bumping into things as I must, even losing heart on occasion.

But, hope is ultimately going to be the tool to use, because, it's limitless in what it can do. The limits I put on it are mine. Just as we never truly knew if the doggie was for sale, although the singer lists a multitude of reasons why she would like to buy the dog, we just have to keep hoping that the outcome will be what we need, rather than what we might want.

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