Saturday, April 22, 2017

You can't take that away from me

Cancer takes things away.

I would imagine that doesn't come as a surprise to you. I've probably even talked about it on these pages before.

But I've been thinking about it quite a bit as we prepare to move out of our house of 12 years. Cancer has taken our ability to live in our home any more. True, age hasn't helped as we live on a couple of small pensions and Social Security, but I think we could have continued to manage for a few more years if cancer hadn't entered the arena whacking everything with its big fekokta stick.

We just can't manage the upkeep any longer. I am completely unable to do any of the chores, other than running the vacuum once in a while and hitting the furniture with the feather duster.

We have had to pay for services that we normally would have done ourselves, most notably mowing and snow removal. Yes, we have a riding lawn mower and we finally purchased a snow blower a couple of years ago, but I don't even have the strength to run either of them. Sheri has done her best with both, but since she broke her leg and ankle at the beginning of last year, the ability to do those things has decreased dramatically.

So, we love our home. It is on an acre of land and overlooks a beautiful lake, with 50 feet of lake frontage. But, so what? We can't manage it any more, so off we go.

We have actually found a pretty ideal condominium in the nearby city which fits most of our needs. Snow removal and lawn care, big pluses; it's on one floor which is becoming increasingly important with Sheri's leg injury and my constant fatigue.

But it isn't this beautiful home we have now. And the decision to move has really been made for us. It is the type of effect that cancer has that you just don't think about until it is you who have cancer.

“You have cancer.” Done and dusted doc. Lots of medicine, doctor visits, fatigue, nausea. Right. Got it. But what about having to give up your home, albeit for one that better fits your needs? What about the confidence you have that you have your health, so you don't need anything else? What about your hair? As it turns out, I've been able to adapt a style that I like, but again, it wasn't a style I picked, it was a style I adapted to because one of my chemotherapy treatments caused my hair to fall out.

So, cancer takes.

I've been having a hard time dealing with that lately, but, as always, the answer to living with it comes with flipping the coin and considering what cancer has given. Sheri and I are closer than ever before, which is really saying a lot.

My kids and I feel like this is a fight we are in together, so, even though we are hundreds of miles apart, it gives us something to share; something to consider at length.

The amazing support we have gotten from friends is unbelievable. Virtually every week brings an “It's a Wonderful Life”-ending sort of moment where people have helped us overcome what seemed like an insurmountable obstacle with room to spare.
Moving is only the latest example. We have already moved a lot of our stuff into a storage area with the help of friends.

Our daughter Kristie was able to visit from San Francisco for the first big weekend of moving boxes and big bits. Her enthusiasm was wonderful and she made sure neither her mom nor I overdid.

There was a wonderful symmetry to her being here as we made what is almost surely our last big move as we settle into the place where we'll spend the rest of our lives.

When I went to Sheri's house to pick her up to go our our first outing (calling it a date when we were both 44 years old was not doable), Kristie was home visiting from college. As she let me in to the house, while wheeling her bike out for a ride, Kristie (whom I had never met) said, “Be nice to my mother, she's a nervous wreck!”

And so she was, and so was I, and here we are almost 24 years later facing another outing with nerves and excitement galore. So, let's get to 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, February 25, 2017

One too many mornings

An' the silent night will shatter
From the sounds inside my mind
Yes, I'm one too many mornings
And a thousand miles behind

One Too Many Mornings
Bob Dylan

There are too many mornings right now where the ability to get up to face the day is taking a hammering.

Facing cancer on a daily basis has been a challenge of varying proportions for the past three and a half years, but in this Winter of Our Discontent, it has seemed like a losing battle.

See, I have no idea how long it's been since I've felt good, felt healthy. The goal for most days is to not feel so bad that I can't function.

I've also had to come to grips with a hard decision. I'm beginning to doubt if this fight against cancer can be won. Wait, let me put that another way. The battle is being won. My blood work has been outstanding for the past few weeks, since I started my new treatment, actually.

But, here's the thing. As the cancer is being knocked down, so is the rest of my system. Cancer is no joke. If you're going to battle it, you have to use the big guns and doing that brings collateral damage.

It is a hard, but true fact, that I am putting poison in my system on a regular basis and it makes me feel sick... a lot. But what am I supposed to do instead?

Good question, that. Obviously, we keep going. We keep the cancer numbers knocked down and wait for spring.

I've missed a couple of treatments this month. One because I had/have a horrendous cold and I won't go around other patients and risk compromising their systems. The other was because we could not get up our road which had been made impassable by ice, the same ice which has made it hard for us to get out on any regular sort of basis.

I did get to the clinic for a day-long treatment yesterday; day-long being only a slight exaggeration. I left the house at 9:30 am. and got back at 6:30 pm. I did have to stop at the pharmacy to pick up a prescription, which took about 20 minutes, so, you can see, the bulk of the day was spent in the treatment chair. It was one of the very few days Sheri wasn't with me. She now has a horrific cold and did not go with me for the same reason I missed one of my own treatments.

The worst side effect of the new treatment is suffering hot and cold flashes which leave me drenched in sweat and freezing old. They started this time about half way through the procedure and were in full flow when I walked in the door at the end of the day. Sheri actually took one look at my face and asked if it was raining, and she wasn't kidding.

And so the rest of the night went... add clothes, remove clothes, get a towel and wipe sweat, wrap towel around my neck to hold back chills. Oy.
Then it's bedtime and I go to sleep wondering what the next day will bring, but fairly sure it isn't going to be a time when my feeling lousy takes a day off.

Brothers and sisters, I have tried to remain positive through this long, long journey and I think, for the most part, I've had success. But now, I need to be honest, honest as I have tried to be throughout our journey together. I am running out of steam.

What does that mean? I don't really know. Does it mean I'm going to give up? No. Does it mean I'm going to make feeling sorry for myself a bigger part of my life? No.

I don't know what it means.

I do know I'm tired, but I will continue to scratch and claw my way through this. We are so much better off than when I first started treatment, and maybe I can hold on to that fact and build from there.

I guess we'll 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

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

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