Thursday, January 26, 2017

A double dog dare is not the answer

Doctor, my eyes
Tell me what is wrong
Was I unwise to leave them open for so long
Jackson Browne

I've been looking through the Book of Mainenites lately, particularly the Book of Jim. This is because the number of potential “Why me's” continues to grow. I don't think I would say we have reached Job numbers yet, but if I got caught out in a shower of frogs without an umbrella, I wouldn't be surprised.

Before you have a fit... I know the rain of frogs wasn't Job's in the Bible, but maybe there is a similar incident in the Book of Mainenites, I haven't read the whole thing.

You may wonder why I would make fun over something as important as my eyesight. Well, what would you rather I do? Making fun of serious situations is what I's how I cope.

Anyway, my eyes have been bothering me constantly the last few weeks, with the situation worsening as the days go by. For lack of a medical term, they keep producing gunk, which obscures my vision. It is constant. All day long, every day. Once in a while, the gunk hardens and I need to take care not to scratch my eye or the surrounding skin.

My Idaho friend Peters (currently his real name) tells me he has an eye condition where he feels like he's looking through some kind of gell all the time. He quit playing fast pitch softball when he struck out on three pitches that sounded fast.

Mine isn't quite like that, but my vision is blurred most of the time and I have to keep clearing gunk, wet and/or dry, out of my eyes.

As is often the case, it's hard for my doctors to pin down what's causing this. The best guess is that it's a side effect of something that I'm taking.

If that's the case, once again we face the dilemma of whether or not the cure is worth it. We haven't really had a report on my kappa light chain proteins for a while. We'll make sure the necessary blood is taken the next time we visit the clinic, which is in just a couple of days. We can make a decision from there.

I know my friend Peters has been brave with a problem that, in this case, is obviously greater than mine. But, I don't want my health plan to come down to a case of a double dog dare. He has what he has and is dealing with it as he does. I have what I have and Im dealing with it as I does, and I'll be in Scotland afore him, but how much of it I'll be able to see would be in some doubt.

Look, as far as we know, this isn't threatening my sight. It is merely another inconvenience in a life that has become full of them.

On the other side of this particular moon... I seem to have stopped throwing up. I still feel nauseous much of the time, but vomiting seems to have taken a holiday. That's very good.

Buy on the other, other side, I feel a lot of bone pain. Many of my bones register a five on the scale I have to report at each visit. Still, if I touch almost any of my main bones, the pain shoots up to a 10 and beyond. I probably need to have a full body bone scan done, which involves about 26 X-rays.

My read on that is that my medical team is reluctant to do it. I suppose they don't see much in the way of assistance coming out of it. If the myeloma has done damage, and the scan shows that, well... what are we supposed to do about it. The process would seem to have little value in terms of improving how I feel.

But, here's the thing. I don't care. I don't care if we can't do anything about the damage that it's done. I want to know if I have lesions, or holes, or cracks, or nothing affecting my bones. I haven't made a big deal out of it yet, but I'm going to and I know the doctors will give the go ahead for the scan. They are absolutely concerned with my mental well being, just as much as my physical situation.

So, stay tuned... again. The eyes may have it, but what does that mean, exactly.

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, January 12, 2017

There will be tears before lunchtime

Don't let it bring you down
It's only castles burning,
Find someone who's turning
And you will come around.
Neil Young

The following happened in our house one day last week. True story.

I was in our downstairs bedroom/office, so tired I had to take a nap. It was early in the morning which is a time I usually go on our computer to check out Scottish sports team and newspaper sites. Our cat Wolfie usually comes in and sits at my feet, eventually weaving himself around my legs while I pet him.

This is our routine. We both enjoy it on an almost daily basis.

On the day in question, though, I was so tired I had to lay on the bed. Wolfie had come in, no doubt to follow our routine, but I was completely unable to play my part. I started to tell him that, but then I began to cry. Seriously. I felt so bad for letting him down, I just dissolved into tears.

And I couldn't really stop. Wolfie took off for greener pastures, and I sat on the bed longing for sleep to put me out of this particular phase of my misery. It came quickly enough, and when I woke up, I felt less weepy, though I wasn't about to watch Old Yeller or Bambi any time soon.

It certainly doesn't take a genius to know there was more to all this than what appeared on the surface. While I was genuinely sorry to let the cat down, the cat didn't seem to care all that much. It had to do with me, not meeting expectations. And, once that door was opened... holy cats, stuff fell out of there like Fibber McGee's closet.

Now, I realize, that many of my references verge on archaic to many of you. But those of you to whom they do, likely have no problem asking Siri for help, or just looking it up yourself. This is just how I talk and the references that I use. I imagine most of you are happy enough to stick with me at this point. I have been doing it for so long, I think we've weeded out the only casually interested.

So, I sit and take my bearings to try to see what is at the bottom of this.

Well, my eyes are having an issue. They leek some sort of fluid which turns, alternately, gooey and crusty, to to be too insensitive. And, check, they are still doing that.

The skin over my entire body is so dry it causes an itch that is impossible to put to rest. Check. That's still going on.

We've adjusted some of my medications and maybe that plays into it? I doubt it, but you never know.

I'm going to the clinic for my day-long treatment in a couple of days and will try to get some direction as to what to do about all of that.

In the meantime, I need to take a look at what is happening right now. Why is not meeting my cat's expectations, or rather, not meeting what I think my cat's expectations might be, reducing me to tears?

You know what I think it is? When I began my journey through cancer approximately three and a half years ago, I was pretty much full of piss and vinegar. I was able to face things and find solutions. And I shared all of that with you. The issues, the fight, the resolution. Done.

Now, I find myself coming up short a lot. I think that's where I feel I let people down; where I let you down. I am so weary now that I just can't fight every issue that looks me in the eye and demands solution. I am too tired. Too. Tired.

So, this stuff builds up inside my head. And it builds up and builds up and I find myself crying because I am too tired to sit at my desk and share five minutes of time with our cat.

This whole cancer thing is hard. I think it's the type of test that people buy Norton study guides to try to pass. Only, there doesn't seem to be a Norton guide for this. You just have to suck it up, day after day, and solve the questions that are put before you then. Some are multiple choice, some are essay; all are tiring.

Wolfie and I have spent numerous sessions together at our appointed posts; me at the desk searching and typing, him brushing against my feet and through my legs until he's had enough and wanders off to sleep under the bed where he can still keep an eye on me while he takes his nap.

There have been no more tears, but there probably will be. As long as we all take this journey together, tears are inevitable. And you know what? That's just fine with us.

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, January 2, 2017

Boxing Day. Who needs it?

And there’s a hand, my trusty fiere!
and gie’s a hand o’ thine!
And we’ll tak’ a right gude-willie waught,
for auld lang syne
Robert Burns
So. Boxing Day. If you're unsure what it's all about, don't mind too much. There seems to be as many explanations as there are days leading up to the Dec. 26th holiday.

Google it and see how many answers you get. When I was a kid, my parents told me they didn't know why it was so called, but, then, my parents also never told me how old my sisters actually were. True story. I still don't know.

Boxing Day. How many of us remember where we were on any given Boxing Day? Right? If you're like me, you have enough trouble remembering where you were on any given Christmas Day... or yesterday.

Sheri and I will likely remember this one for a while because we spent the bulk of it in the emergency room of the local hospital. Bonus coverage. It didn't seem to have much to do with my cancer.

Here's the story... We had a very pleasant Christmas, enjoying lunch with our friends Wanda June (not her real name) and Billy (not her real name either). All was good until about 6 am Boxing Day when I woke up shivering... violently. I added all sorts of extra layers to my nightime bedclothes, but nothing worked. I. Was. Freezing.

Ever practical, Sheri took my temperature. 102.4 degrees. This was bad. Very bad. I'm supposed to call the clinic any time my temperature is over 100. So, call the clinic we do.

Closed. But it's a Monday. Yes, but it is also Boxing Day and Christmas was on a Sunday. Oh, man. This wasn't something we could wait to see it it passed. As I think I have said here before, this is the sort of thing that will ultimately be the death of me. An infection of any kind.

The clinic put us in touch with the terrific doctor on call, who phoned ahead to the emergency room to let them know we would be coming in. That cut the waiting time. It did not seem to affect the amount of time we spent there in total, however.

There were numerous tests to be run including X-rays and an EKG and a bunch of other stuff, all trying to determine why my fever was so high. Well, as is so often the case, none of the tests could tell us bupkis.

As we stagger and stumble our way down this road, dealing with cancer, we have found, more and more often, that medicine does not always have the answers. In fact, we're finding it quite often can't offer much of a clue.

Meanwhile, back at the emergency room... Time passed, five plus hours, my fever lowered and I got to go home... and spend the rest of the day picking those little sticky bits from the EKG off my skin. Some of those were tough little buggers, by the way.

This left us with only one more holiday to endure/enjoy... New Year's Eve, or hogmanay, as we call it in Scotland.

Personally, I spent no time, none, not any, looking back on 2016. I don't know why. It would seem like a natural enough thing to do. But, I didn't.

From some of the things I've read, it was a pretty rotten year for most people. I can only guess that my bar on rotten has been lowered because I live my life in days and let the years take care of themselves. I don't mean that in any sort of bad or fatalistic way. I feel ill so much of the time that I take things bit by bit- endure the bad, enjoy the good.

Whether this led to us missing the dropping of the ball for yet another year or not, we cannot say. All we know is that we were totally engrossed in watching the latest version of “The Jungle Book” in HD and only when it was over did we consider the time. Even then it was only to see if it was bed time.

“Holy crap,” says I to Sheri. “We missed New Year's.” And so we did. So we gave each other a kiss, decided it was late enough to go to bed, and called it a year, all be it a little bit later than many on the east coast.

In case you're unsure of the what the verse above means: And there’s a hand my trusty friend! And give me a hand o’ thine! And we’ll take a right good-will draught, for auld lang syne.

Hope you have only the best in 2017.

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