Thursday, July 31, 2014

Making sure my 4:30 a.m. expectation is ready

4:23 a.m.

Great time of the day to wax poetic, right? The stark, gray dawn slowly blah, blah blahing its way past the night's jibber-jabber, bringing a new whatchamacallit

4:24 a.m.

filled with... know... and so on, and so on and scooby dooby do-oo.

4:27 a.m.

Used to be the time of day to break out the old Sinatra 78s- “So set 'em up Joe. I got a little story you ought to know.”; The Beatles' 45s- “Yesterday, all my troubles seemed so far away.”; the Nirvana cassettes- “A mulatto, An albino, A mosquito, My libido, Yeah.”; and now the Jason Mraz CD- “I say the tragedy is how you gonna spend the rest of your nights with the light on.”

4:34 a.m.

I used to love the drama of it. The boo hoo of it all. You know... The blithering... As another uncaring sun pokes at the ashes of yesterday's lost possibilities, here's the lonely, long-suffering... what? Poet? Writer? Artist? Anarchist? Dylan Thomas wannabe?...Poor me, poor me, pour me another.

And so on a.m.

Why is all this malarkey running through my brain, and why do I feel compelled to share it with you? Because and because “why not?”

Look. What I really want is to know what's going on with my cancer and why do I have these pains in my stomach. I say pains in my stomach, specifically, because they are the latest to make themselves present and available for duty and they also seem to the only ones that can't readily be tied to bone damage from the multiple myeloma. The only reasonable time to work on those sorts of issues is as the stark, gray dawn is slowly blah, blah blahing its way past....

I've been quite careful, I think, about setting expectations for myself around having cancer; getting my hopes up, if you will. I think I missed it this time, though.

Yes, we were focused on the transplant, as we should have been. But, it's been almost 90 days since the transplant was completed, so when we set this week as the time to find out if the cancer was in remission, I pretty much bought into it, without the usual caution.

Black or white, baby. Either it was in remission or it wasn't. Yes or no.

Well, let me ask me a question. What was I thinking?!?! Hmmmm? What? Go ahead. Mr. Big Brain tell everyone what you were thinking. Oh, that's right, you didn't need to think- you KNEW it would be remission or not. Despite the countless situations in which you've found yourself during this journey, ones that lacked a definitive answer, you KNEW this would be the one to provide a definite answer. Black or white, baby; remission or not.

Well, let me ask me another question: What the hell is wrong with you!!!!! OK. Maybe that one's too hard, so let's just share with the folks the answer to your question about remission. Yes or no? Is your myeloma in remission, or not? Excuse me? What was that? You're mumbling...Yes or no?

Maybe. You're actually saying... mumbling... maybe? Oh man...

The answer wasn't even maybe, was it? Your nurse navigator (who is marvelous, by the way) could only pass along what the doctor said and he said the blood work was “encouraging.”

Now, obviously, that is good news; encouraging is good. But it isn't yes or no, is it?

Could I have pushed? Sure. Could I have gotten the doctor on the phone and done some poking and prodding of my own? Also, sure. But I'm going to Boston on Monday to see my oncologist at the Dana Farber Institute who is actually head of my treatment team, so he's ultimately the one I need to ask anyway, professional courtesy and all that.

So, for our Boston visit, I'll have my expectations with me, but they won't have a front row seat. They can be in the big bag with all the other stuff Sheri and I have been dragging around with us for the 11 months since I was first diagnosed. Yeah. That seems about right.

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

Thursday, July 24, 2014

But I don't want to have to learn this stuff again

This whole... having cancer... is a tricky business, partly because it wont stay where you put it.

Some days, you wake up and feel like everything's good. The discomfort overnight was certainly manageable and a good night's sleep helps deal with the challenges. You put your cancer in the hopeful drawer.

A couple of days later, you feel crappy. Sheri asks for specifics- physical pain? Mental challenges? And you don't know. Some of each, usually. Put it in the days to be endured drawer.

The mental challenges of living with an incurable cancer, 24/7. can be severe and I don't like to give them any more time in the fresh air than is strictly necessary. They don't play well with others and they can easily wreak havoc on your overall well being. Put them in the later gator drawer.

But, no matter what I want to do- where I want to put things- there's always the whack-a-mole factor. You've played the game at carnivals and fairs, right? You get a mallet, and the playing field is made up of holes out of which moles pop at varying times. The idea is to hit the mole and get it back in its hole. Fair enough. But when you do, one pops up from somewhere else.

For me, cancer has been like that too. As soon as you think you've whacked all the moles there are, that NOW you can start focusing on improving your health, there's more whacking to be done.

I've long thought the only way to win at whack-a-mole is to unplug the game. Unfortunately, the deluxe, special cancer edition whack-a-mole does not allow that strategy. Too bad, so sad.

So, you leave the thing plugged in, take an occasional whack, and try to ignore it the rest of the time. I have enough to do, frankly, trying to walk the line between hope and denial, to give it too much attention. The drawers are there, the whack-a-mole is there, the walk is there. Deal with it.

But here's the thing: lessons I learned back at the end of last year and the beginning of this are having to be relearned. For the longest time, we've known exactly what the course was- follow the treatment plan, take the pills, endure the bone densifier, sit through the chemo, have the transplant, get home and begin a long recuperation period. Got it. Can do.

But now this new thing has come up, popped up if you will. I have these pains in my abdomen that just won't go away. I've had many different kinds of tests done, and all we know is what it isn't. Don't get me wrong, that's good. My major organs seem to be unaffected, my blood work is good and so on. The obvious things we might have to worry about, we don't. So what's up, doc?

Now, how big a deal is this? I do not know. And that's part of the worry. My doctors aren't exactly sure either. We've done all these major tests, and now we are starting to look at things that seem less likely, but still have to be addressed.

There's the chance that my new stem cells are causing some sort of irritation in my system, thus creating the pain. By the way, if you haven't noticed, what I write should in no way be considered medically correct, or in fact accurate, even if it concerns my own health. Sheri and I both listen during appointments because there are things she doesn't want to hear and there are things I don't want to hear and between us, we usually get it right. Still, we hear what we hear.

Anyway, the current treatment means heavy doses of steroids on a sliding scale: four days at 100 mg per, two days at 60 per, and so on. Most of you know steroids cause me all sorts of side issues, but, at the same time, they also seem to do a good job settling whatever it is we aim them at. Once that treatment's done, I guess we take another look, poke, prod, and see where we are.

The thing is, of course, that this could all be nothing; a mere bump in the road that I've managed to make into one of the cavernous potholes you find around here in the spring. If so, good for me.

In a couple of days we'll be checking my cancer for the first time in a long time. The process has been focused on my transplant and recovery from that, and we haven't, because of the nature of the beast, been able to even look at what the cancer is up to. We assume it is in remission, but we do not know. We should find out then.

You'd think that would be my focus right now- finding out where we are with the disease that started it all. But here's the other thing: I know about my cancer. I have lived with it and been aware of it and absolutely aware of what it is and how we are treating it. It's a known.

This other thing... this unknown. I don't know how to fight what I can't put a name to. Man, this sure seems like a huge pile of manure I'm working my way through.

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, July 17, 2014

If one probe is good....

Well, I can now report that I have been probed through both major openings in my body; from my butt up and from my throat down. I know what you're thinking: Jim, you are one of those rare people who have been medically inspected from top to bottom and bottom to top. Tell us: Which was worse? The stick, and pardon me if this is indiscreet, placed into your system through your bottom bits, or a long cable with a tiny camera on the end shoved down your throat?

Before I get into all that, let me just say this: Those guys who claim to have been pulled from their fishing out back in Uncle Billy's portion of the swamp that they got permission from their cousin Wanda June to fish... those guys who claim to have subsequently been probed by aliens who came to earth to study why it was that first cousins couldn't marry... Well, I guess I can go to their conventions now. Since I couldn't rightly say what had happened during the probing, I figure I would fit right in; maybe even be a keynote speaker.

It seems to me that this sort of probing, alien or otherwise, could be a life-changing experience. I've already told you about the rectum swab I had to give while I was in Boston. As I prepared for my EGD, at the hospital here in Augusta, I couldn't help but think the camera was going to be a tougher experience to swallow. Ha ha. Get it? Sallow? Ha ha. Yeah, I'm laughing now; I wasn't so amused as I considered the experience prior to my appointment.

Fortunately, I didn't have a great deal of time to think about this. The appointment was set up on Monday for a Wednesday. But, in truth, it didn't take much time for me to think all I could about a process like this. I only had so much information, and I was able to play it over and over in my head on the crazy train.

They were going to put this...thing... down my throat; the same throat I used to stick my fingers down to induce vomiting. They were going to stick something down that throat that had a camera on the end And don't tell me it was a small camera. When they are about to stick something down your throat that has a camera at the end of it... then we can discuss camera size.

Still, common sense said the medical team had done this hundreds of times and you never heard anything gruesome about it: “Man speaks fluent Japanese after EGD probe goes horribly wrong”; 'Woman can hear only Yanni tunes after probe takes wrong turn.” No. There was none of that.

Okay. That was good. But, then I started to consider the math. Though it has never been a strong point for me, I am able to perform simple math calculations quite easily. For example, as near as I could figure, the distance from the top of my throat to the bottom of my stomach, or wherever it was the probe was going to end, had to be at least two feet, it it went straight down, which I doubted. So, that seemed like a non-starter to me. No way it would get past my gag reflex.

But then I thought about professional sword swallowers who stick all sorts of things down their throats, and don't seem to suffer any adverse effects, other than the need to wear hideous costumes and perform to crappy Gypsy music. So obviously, it could be done. But that seemed like the sort of trick magicians would keep to themselves. How did the doctors learn about it?

As you can see, yet again, I shouldn't be left alone with my brain for any great length of time. All this speculation sounds absurd now. But when your thinking is done to the tune of “Dueling Banjos,” there's only so much of it that an be discounted.

And one other thing. The medical team, at least in my case, never let me see how long the actual probing device was. First, it was behind me and difficult to focus on. Secondly, it had stuff covering strategic portions as it curled. You never got a clear view of the thing.

Anyway, after some relaxing medication and something sprayed down my throat to ease the gag reflex, we began. And then we were done. I kid you not. It was like, ready? Yeah. Okay, Mr. Arnold, you can have a snack now.

And they cleaned up after themselves real good. There was no sign of the probing device and I no longer heard banjo music.

You're probably wondering what the point of all this was. Well, there was still no answer to the question of what was causing my stomach pain, and why it was getting worse every day. It was agreed by all that taking a closer look at the problem area, from inside, would provide some answers.

One look at the doctor's face after the procedure told me that wasn't happening. As previous tests had done, the probe was able to rule out a lot of things it wasn't, but there was no definite clue as to what the problem was.

The next thing is going to be a thoracic spine MRI. My local oncologist knows that pain that presents in one place, can easily have begun in another. Since my ribs have been really painful lately, it makes that that's the next logical place to look.

I'm very familiar with MRIs. Some time back, I was having brain trouble and they wanted to take an in-depth look. So, not only was I shoved into the Pringles' can that is the bulk of an MRI machine, but I had to have my head in a cage, strapped to the table so it couldn't move at all. The thought alone gives you the shivers, doesn't it?

It was worth it though, because after five MRIs on my brain they told me there was absolutely nothing in there; my brain was empty. So that was good... Hey, wait a minute. Now that I play that back, a guy could feel insulted when told something like that... Nah.

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, July 10, 2014

New pain? Old pain? Have a nice fruity drink

So, I have this pain in my stomach.

It's a new pain, which is really saying something because I have enough old pain to keep me occupied and then some. There is pain/soreness in virtually every bone in my body, evidently caused by the healing of damage done by my multiple myeloma. I'm used to that.

I'm also pretty much used to to various rashes, lesions and doohickeys that show up on my skin from time to time. Are they related to my cancer? Who knows. They could all be related to old age, which I do not recognize mentally, but which seems to be a fact physically.

For as long as I can remember, I've had this red, freckle-like thing on my upper chest. One red, freckle-like thing... for years. I noticed the other morning, I now have about 10 of them, all over my chest. What's up with that?!?!

This latest pain, though, is something different. It doesn't seem to be in my bones. The worst of it is right above my navel, and radiates out to both sides. It hurts if I put any pressure on my stomach. It hurts a lot when I poke at it. When I was visiting the physician's assistant in the clinic the other day, I poked it a lot, causing me to yelp in pain a lot. Both the PA and my wife, at virtually the same time, yelled “Stop doing that.” Old joke duly noted, ladies.

Easy for them to say. You ever have a tooth pulled and have the dentist tell you not to stick your tongue in the hole left behind? Right? How'd that work out for you?

Sheri and I had both been looking forward to a four-week break from visiting doctors. What were we thinking? More blood was taken and analyzed; much poking and prodding was done; and again, numerous questions about my s-t-o-o-l were asked and answered. My s-t-o-o-l remains fine, by the way, in case you were curious.

Well. The poking, prodding and questioning didn't really provide an answer, so a CAT scan was scheduled. One of the things I love about the team that is taking care of me, is that they always look at the big picture. They could have ordered a CAT scan right away, but they are sensitive to the number of CAT scans I've already undergone and wanted to avoid another, it possible.

It wasn't. A scheduler called me to tell me the date, place and time for the latest high fashion photo shoot of my insides.

At the end, she said something I didn't quite hear. “Something, something, something drink something something an hour. The scan itself will only take a few minutes.” I thought she said “drink,” but I wasn't sure. Of course, Mr. Pay As Little Attention As Possible, didn't ask for clarification. In addition, he also knew it couldn't have been drink because whatever it was sounded like it could last an hour.

You'd think I'd learn, right? Had you been there you would have been yelling warnings of various sorts. Sheri was there, but only heard my end of the conversation. We agreed the scheduler had probably said I shouldn't be drinking anything an hour before the scan.

We go for the scan, and the nice lady puts us in a nice room, gets us settled, and leaves to get something we need for the procedure, She comes back with, what I would consider, a large bottle of white liquid and two cups with ice.

In this entire journey with cancer, no process has ever, and I mean ever, gone well when it starts with cups of ice or white liquid in quart-sized jugs. This one was beginning with both. I have still retained enough naivete to ask how much of the liquid I had to drink. God bless her, she didn't laugh, she simply said, “All of it. But you need to take an hour to drink it, so that it coats your throat” and other body bits. She then added the coup de grace: “It's not that bad. It tastes fruity.”

Well, that wasn't true. She was just trying to put me at ease. In truth, it didn't taste like much of anything. As time went by, though, it started to taste like watered-down not much of anything as the ice melted. I HATED IT. I think of all the times I lied to my kids about a medicine they had to take: “It tastes fruity.” Shame on me, in retrospect.

It seems that I have an inflamed muscle somewhere around my intestine. Again, I wasn't paying too much attention when my PA was telling me. I was glad it didn't seem to be cancerous, and the rest was gravy. I have to see a gastro-ntelognyiesty-ist next to see what to do about it. I know that's not the right name for it, but, since the doctor's name will be on the door, I just need to worry about his address, not the name of his specialty.

By the way, I wouldn't have had to drink that stuff if it wasn't for the multiple myeloma. Usual image enhancing techniques can't be used because... well, I'm not sure why. I just know it screws things up, so “fruity” drinks it is for me. Oh multiple myeloma... why you have to be such a pain all the time?

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, July 3, 2014

I guess I have been through a lot

There is no doubt that we are on a streak of wonderful clinic visits. The latest generated more enthusiasm and another A+. It never gets old. If I'd had the positive feeling of multiple A's in college, maybe I would have applied myself more... Nah.

I was never motivated by grades, just as in my professional life I was never motivated by money. If I didn't like what I was doing, you couldn't pay me enough. If I did like my work, I swear to God, most of the time I couldn't tell you what I was being paid. I'm not an idiot, in case that thought entered you mind, at least not in that regard. I knew I was usually making enough, and that was okeedoke.

Anyway, we were sitting I the doctor's room, after being graded, and I was gearing up for another woofing session: “Didn't study”; “How do you like me now?”; and so on. Then Sheri said something that stopped me in mid-woof: “Do you realize what you've gone through, what you've done, to be getting such good news?”

“Do I realize what I've gone through? You're talking to the... Wait. What?”

“This didn't just happen. You've met every challenge you were given. You've done everything you were asked to do, no matter how hard it might have been. These good results didn't just happen.”

What? That's not right. No. I didn't study. Sheri is the one who has been conscientious about things. She's the one who has been stable-ish, and focused.

“Think about what has happened since Labor Day weekend last year.”

I don't spend much time doing that. For one thing, there's been enough going on at any given time to keep me occupied. I wrote about what was happening at the time, and filed it under a blog number (this is blog 54, by the way), and faced whatever was next.

As we know, though. it doesn't take much to get me thinking. Okay. On the Saturday of Labor Day weekend I was attacked by a swarm of bees, stung 15 times, injured (I thought) a rib, went to the doctor, went for a CAT scan, and found out I had multiple myeloma, whatever that was.

So the “going through” started immediately. I don't mean because I found out I had cancer; that was too big a topic to even consider. No. I had to go home that night and tell my wife I had cancer. I had left the house with an injured rib, and I was coming home with cancer. As I wrote at the time, there is no easy way to do that. You just do. Then you just do with your kids.

And the just doing becomes how you handle “going through.”

Alright, I have cancer. Now what. Well, multiple myeloma is incurable, but is treatable. Okay. There's conflicting information if ever I heard it. What does that mean? To me, exactly?

Right. Initial treatment is chemo in pill form and large dosages of steroids. The steroids made me manic, but it was for my own good.

In the process of going through the initial treatment, I presented symptoms of blood clots, a not uncommon side effect of my treatment. After being checked through nuclear medicine, it was determined that I was stressed, and wasn't even aware of it. Maybe I was distracted from the stress by the terrible rash I developed; another side effect.

Well, we got through all that and began making arrangements for a stem cell transplant. Look, I had never heard of such a thing and, frankly, I would have been happy to live my whole life without knowing what it was, never mind having one. But, if I was going to get through this, my medical team felt it was the right thing to do.

In the process of preparing for the transplant, it was determined I had a rare chromosome problem called chromosome deletion 17p. The name struck me as ridiculous, something you would expect in a Monty Python sketch. Well, it wasn't funny, as it turned out. It could seriously affect any remission I may achieve. Again, what am I supposed to do about that? I needed to add an IV chemo to the regimen I was already taking. Fine, I can do that.

Then there was the stem cell transplant itself. Don't worry, I'm not going to make you revisit that. Yes, Jim, we know it was challenging. Yes, Jim, we know you were very brave during the whole process. No, Jim, we don't really want to hear the details again.

Then there's all the little, daily challenges that I've forgotten about Sheri mentioned, in passing this morning, about when I had to chew on ice for an hour-and-a-half, for a few days; I don't even remember how many. It was so the chemo I had been given to kill my immune system prior to transplant wouldn't injure my throat. I'm sure that doesn't sound like much to you, but believe me- it sucked.

So, all in all, Sheri had an excellent point to make when she asked if I knew all I had gone through. Even with all that, we still don't know what is happening with the cancer itself. The transplant was a huge success, and my immune system is bouncing back quicker than anyone expected. The next big thing to go through then, is finding out for sure that the cancer is in remission, as we believe it to be. We can do that.

While I think it's important to look back on all that, I see no need to linger. There's plenty ahead to go through and I'll continue to focus on that. I do want to point out though: two A pluses and an A, and I didn't study. How do you like 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.”