Thursday, April 28, 2016

If I could put time in a bottle... Could I still get my deposit back?

So, if I said to you, “Time is a funny ole thing,” you wouldn't necessarily argue, would you? Certainly not without some clarification.

We've gone back and forth about that on this space before. Well, I assume we have. I mean, I've gone back and I assume you've gone forth. But the point I'm generally trying to make is that even though an hour is always an hour, always 60 minutes, 3,600 seconds... If you had a stop watch and were supposed to press “Stop” each time an hour had passed, even given a generous cushion -10 minutes either way, say - you'd probably still be wrong way more often than you would be right. Right?

I don't claim to have any idea why this is, I guess I don't even know if its a universal truth. The only thing I can say with certainly, I suppose, is that it's true for me.

At no time, nor place, is this more apparent to me than when on some monumental journey, physical or mental. Say, driving to Florida from any New England state (or the geographical equivalent in miles) with more than one kid and/or dog in the car... Can I get an amen brothers and sisters? I don't know if having DVD players, iPods, cell phones or other electronic doodads makes a difference, but I rather doubt it, unless kids are somehow forbidden to use the word “mine” for the entire trip. The dog can take his chances.

As far as mental vanquish? How about waiting for lab tests? Any lab tests... even/especially pee-on-a-stick.

The second anniversary of my stem cell transplant is just around the corner. Talk about an event that ran the gamut from the blink of an eye to spilled molasses in February (slow, though it would have to be spilled outside and what you would be doing monkeying around with molasses outdoors in February raises enough questions to get us completely off track if we think about it too long, so...).

The time leading up to the actual process was painfully long, but there were so many details to be fixed that any less would have been criminal. And as the day approached ever sooo slowly, key bits of the procedure kept popping into our heads- “You'll be given enough strong chemo to kill you...twice;” “You'll be in isolation for about 20 days;” “Then you just have to wait for the new cells to take hold.” And as time went by, those actual phrases, though not their portent, became more and more succinct: “chemo, kill, twice, isolation 20 days, new cells, hold, chemo, kill, isolation, hold, kill, kill, kill.” And as the number of words dropped, the speed with which they would present themselves in my brain would grow.... until they didn't.

After the verbal climax of the transplant itself, we began the arduous trip back to what we thought would be a clean bill of health, but what turned out to be less than that.

Still, as we recovered, foods would be dropped from the prohibited list; I no longer needed a mask, first indoors, then outdoors, then in small crowds, big crowds etcetera; my hair would grow back. The days were taken up with watching for signs that I was getting better, whatever that meant. Time flew, time dragged, an hour lasted every length of time imaginable except for 60 minutes.

And now all those 37-minute, 76-minute, 61-minute, 44-minute hours have added up to almost two years. So, even the sum total is a gyp.

I mean, in many ways it seems like just yesterday Sheri and I were on our way home from Boston and I had rain fall on my bald head for the first time ever. But, too, it must have been way more than two years ago that Sheri and I sat on my hospital bed in Boston and stared at the dry erase board willing my white blood cells to climb from two to 6,000 so I could go home.

And what have we been through in those two years, people? You've had your share of 71- and 54-minute hours, and so have we. And here we are. Still standing. Sheri is a little tipped to one side because of her broken leg and ankle. I'm not quite as upright as I was two years ago and chances are you may not be either.

I'd still take my journey over anyone's. How 'bout 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, April 21, 2016

Happy birthday? Why?


Well, I just turned 67 years of age.

Personally, if I were you, I would figure that deserves a spot in the Great Big Book of Why Would I Care About That? Seriously, another year on. And It's not an isolated incident. As long as you live, it's the same thing year after year.

But, your birthday demands some kind of attention, right? Even if you don't ask for it, you get it. Now, with Facebook, it's even more so.

When I was a kid, when birthdays may actually have meant something, neither me nor most of my friends had birthday parties. A couple of the more well-to-do families might have given their child/children a party/parties, but there weren't too many of those in my circle of friends.

My new American friends gave me a couple of parties early on. They realized I'd never had a party and wanted to make sure I had one in this wonderful, new, home of the brave, land of the free and birthday parties for everyone! It was a nice surprise and people gave me stuff. Nice.

Somewhere between there and now, though, I pretty much lost interest in my birthdays in general and parties in particular.

Look, I think there are certain birthdays that matter. The year marked is some sort of watershed, so, yes, they are something of a big deal.

When you turn five, or so, you generally begin going to school. I think until that moment, your social grace and skills have slowly but steadily been getting stronger. Once you start school, the long slide into social mediocrity irrevocably begins.

Then, as you move into double digits, you and/or your family take care of some religious obligations. First Communion, First Confession, Bar Mitzvah, Bat Mitzvah. Important to mark those events, with or without a party.

At 16, earning a driver's license becomes an issue. Some are ready, some are not, but the fact that such a huge step toward adulthood is available hangs over everyone's head like the Sword of Damocles.

While turning 18 and registering for the Draft isn't the horror it was when I became 18, it's nevertheless a milestone. You can vote, though the legal drinking age now pretty much remains three years away.

There's where I think the last birth year worth noting sits. You've been given all these rights and opportunities and now you can even toss them all away in one night of unacceptable drinking behavior. That first felony conviction's a doozy, brothers and sisters.

While I believe all of that to be true, I must also say that since I became a cancer sufferer, the passing years mean something different. Look, I find it hard to generate enthusiasm for another birthday. It still feels like just another year, just another auld lang syne.

What is different, though, is that each year now feels like a marker of some kind. Like living to another Christmas, a grandson's graduation, another beautiful, sun-filled day sitting in our yard with my wife. So a birthday becomes another marker of time achieved, of cancer held at bay for a while longer.

And one last thing about birthdays. Aren't we recognizing and celebrating the wrong person in that deal? What was the birthday celebrant's part in the process? You lounged in a nice warm, sauna-like setting, soaking up the nutrients, pretty much just chillin'. Your mom on the other hand, spends about 38 weeks purring on weight, fighting swollen feet, clothes that are not comfortable, knowing at the end of it all she's going to have to pass the equivalent of a bowling ball through a space made for a tennis ball. And she doesn't get the party, why??!!!

She's the one who should get the cake, and the presents, and the singing. Good job, mom. Just sayin'.

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


Thursday, April 14, 2016

Another loss, another fight

I lost another friend to cancer this week. I say friend, cause that's how he seemed to me. I mean, I hadn't known him an especially long time, didn't see him on any sort of regular basis, didn't have dozens of stories to share about things we did together. But...He was someone I liked; someone kind, caring and thoughtful; willing to help others on a moment's notice. Those are the things that matter; those are the things that led me to call him friend.

I had bumped into him about three months ago when we were each visiting our own doctors at the cancer center. He looked pretty good, and I wasn't aware that he'd been sick, so we didn't talk an awful lot. Hey, for all I knew, at that point, he could have been there as a volunteer helping other people. That's just the type of person he was.

I saw him again about a month later and it was obvious that he was there for himself, not for others. He looked pretty sick, but he didn't complain. Again, we just talked about what each other was doing to help ourselves and away we went for our doctor visits.

The last time I saw him, he didn't look so good. That doesn't always mean much, not as far as outside appearances goes at any rate. But, this time, he looked really tired, from the inside out. He was having a hard time talking, his significant other was there and Sheri was with me and the four of us kinda huddled together to share... well. To share whatever positives we could.

Then the two of them were off down the hall to see their doctor and Sheri and I went off to see mine. And that was that.

This comes at a time in my journey through cancer that, other than my stem cell transplant itself, has been the hardest physically... by far. My cancer has put a tremendous strain on me mentally over the months, a strain not always matched by physical symptoms. This time, though, the physical pain is the Alpha Dog. Bow flippin' wow. Best in Class.

It began with the first dose of my adjusted chemotherapy and how terrible that made me feel. Somewhere in there, something happened to my collarbone (the good one this time). Now it hurts to breath, it hurts to not breath, it hurts for you to not breath somewhere I can see you...

This lead to an emergency room visit and after a few hours, tests, etc., it was decided that some cartilage had separated from by breast bone. How did that happen? Well brothers and sisters, that answer's in the same book with the one for “Why did I get cancer?” In the medical profession I believe they call it, “The Great Big Book of Because.” I guess the big boy name for what I have now is Costochondritis.

Just to show you the universe is still good for quite the little chuckle at my expense... This is EXACTLY what I thought I had when I went to the hospital after being attacked and stung by bees 2 ½ years ago; when we came to find out if was multiple myeloma. Yeah. Seriously.

When I sit in hospitals these days, which I do a lot, I am very aware of how much actual disease and illness is around me at again given time. Every cough. Every sneeze seems like a personal attack.

So, it didn't come as all that great a surprise to arrive home with something which, though maybe not flu, wouldn't certainly do until the flu showed up. Aaaarrrrggggghhhhhh.

It took difficulty in breathing to a whole new level and took any cough, no matter how slight, and turned into a multi-colored display of the body's pain centers that left anyone looking at it wondering: “Okay. Red is pain. Right? But what about all these different shades of red? Red is all we have.” True dat, my sisters and brothers in the medical field. Welcome to me.

The bottom line in all this is that I feel lousy, but it's a strange lousy. It's almost like a pre-cancer lousy, when all you had to worry about was which of the myriad medications shown on TV would work best. That lousy was an adult version of what you had felt as a child through young adulthood through.... well, now. There were mild variations, but rubbing Vick's on yourself wasn't so different from your mother rubbing Vick's on you.

But you don't rub Vick's on light chain proteins and drinking warm tea with honey is just going to gum up your system. But... But... Here's the thing we know as a result of the past 30 months. We can adapt. We can adjust. We can figure out what it is we need to toss at the “new” lousy and beat it... I just hope it doesn't turn out to be that neon yellow liquid medicine that stuck to the countertops and wouldn't come off. Yeah. I hope it isn't that.

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


Thursday, April 7, 2016

Now that's what I'd call pain

I seem to finally have stumbled across some information that helps me understand a question that has bothered me for... well, for as long as I can remember, and certainly as far back as the birth of my first daughter, Jennifer, who just had her 47th birthday.

With all a woman seems to go through to have a baby (pain, screaming, tears and so on), why would she ever have another”

I mean, I don't need to shut my hand in a car door to know that it would hurt. I've seen plenty of other people do it. Shutting parts of one's anatomy in various bibs and bobs of mechanical things has always fascinated audiences. And it doesn't have to have the artistry of Charlie Chaplin becoming one with a machine and traveling through the cogs in “Modern Times.” It just has to be man... soft piece of bodily anatomy...hard surface... close the loop and laughs will ensue. Heck, America's Funniest Home Videos has made a living off of it for donkeys years.

So, yeah, looking at it from the safety of never having had one, I can see why a woman would say- and gladly- “Baby? Me? No, but thanks for asking.”

There was a time, of course, when going forth to procreate was what women were expected to do, right? Just so we're clear... I'm not saying I thought that was the way it should be. I'm just sayin'... Get married, have a baby. OK, but then, before you knew it, we were in a position where babies were like the candies on the Lucille Ball-Vivian Vance assembly line sketch - they were coming out so fast we were stashing them wherever we could find room and losing colossal amounts of rain forest to build cribs to stash them in. And by stash them in, I mean, of course, places to lovingly place them with warm blankies, stuffed toys and plenty of easy escape routes.

Anyway, the process seemed to normalize somewhat in the early 70s and the birth rate surely did slow down. Sitting by my wife while Jennifer was being born, I was, admittedly, very young- three months short of my 20th birthday – but it seemed like all that screaming and carrying on would have made the chance of a second child a long shot. And that's before my wife started to feel the pain.

Bam! Good one! The classics never get old... before my wife started... Brilliant.

But seriously folks, the whole procedure looked and sounded very uncomfortable, heck, you could even say painful. So, “Why would you go through that again​?” didn't seem like that unreasonable a question.

Well, in my research, there seemed to be one answer and one answer only: “After a while the memory of the pain fades and you just remember holding the baby...” and so on.

Now, I think the reason I have asked countless women this question over the years is because it doesn't really seem like a good answer to me. Yes, this would obviously be different if it was men who were responsible for going forth and procreating, Sure, there would be plenty of going forth, but I think darned little procreation... “You want me to to pass something the size of a bowling ball through a space in my body the size of a lemon? Yeah... That's not going to happen. Let's just save the rain forests instead.”

All of this came flying back to me the other Sunday morning at 3:30 am. The chemotherapy I have currently started again is a 28-day course. I take the medicine once a day for 21 days, then have seven days off to let my system recover. As I mentioned previously, we have tripled the amount of chemo I was to take, and added another form of medicine to try to get me back in remission.

Saturday night was the first time I had used the new protocol. Whether it was because it was even stronger than I thought it would be, or because my system had been resting for a week, or a combination of the two, all hell broke loose. I'm serious!! My stomach felt like 13-14 people were using my stomach to stow embers to restart their fires in the morning. Brothers and sisters... it was horrific. It was by far the worst pain I have experienced in my cancer journey.

And here's the thing... I almost immediately forgot how bad it was. I was even trying to remember so that I could let Sheri know and we could talk about it. But. Gone... Bupkus... Nada. Yes, I knew it had been terrible, but I couldn't remember the details. Sort of like the ladies had been telling me all these years. And I didn't even had a beautiful little baby to compensate for the pain. I just had a headache.

Life's a funny old thing, ain't 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