Thursday, March 31, 2016

You couldn't beat it with a stick

Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer.

Cancer is everywhere, which means the talk of it is everywhere also. We all know someone who has cancer. You can't read a book without finding a cancer sufferer, survivor, or family member coping with someone who has it.

Turn on the television. Never mind the ads for treatments and cancer centers, watch virtually any program and it's going to come up at some point. At times it is a central plot piece, at other times it just comes up in passing.

There are times when I don't need to spend much attention on my cancer and at those times, each mention leaves me feeling as if I've been poked by a stick. A little stick, and not poked very hard. Still, poked with a stick. The surprise of it, don't you know.

After all these months, I wouldn't describe it as especially bothersome, but it can be a bother. I am not now, nor have I ever been, one who tries to deny having cancer, even if I could.

There are times, though, when I have to focus on it because I need to do something about it. Like, right now. I've spent extra time at the cancer clinic while we decide what we're going to do, in terms of treatment, now that I am back on chemotherapy.

The good news is that there are lot more things we can do than when I first started on this journey. My oncologists have always said that the goal of my treatment is to keep me alive and as well as possible while the search goes on for a cure for multiple myeloma. As we discussed treatment options this time, there was a genuinely good feeling in the air. It's not a case of we do this or that. Rather, we can do this, or that, or a number of something elses to find something that works.

The bad news is that we have to do something, be it this, that or something else. While my overall blood work continues to be good, there's a set of proteins that is interfering with my health and need to be dealt with. That's why I'm back on chemotherapy.

The increases have been small from five, to seven, to nine to 14 with each passing measurement. When I was first diagnosed, the number was 186, so, obviously, things aren't too bad. The way to keep them from getting out of hand, of course, is to treat the cancer and whack it back down since “Not too bad” can certainly become “Oh. Oh,” if left unattended, so treatment it is.

An interesting fact in all of this is that this is the first time we've instituted a treatment and then had to revise it because it wasn't working the way we wanted it to. Every other time we've tried something, it's done it's job, even if that job was just to get me to the quasi-finish line that was my stem cell transplant.

The fact that we had to adjust this treatment did not come as a surprise though, since it came about because of the manner in which we chose to proceed. The main chemo medicine that I take is a tablet of varying strengths. To date, each one has made me experience varying degrees of nausea. So, we wanted to start with the small dose and see if that wouldn't be successful, while cause the least stress to my system.

Well, no, it didn't work, so now we're going to take a larger dose and add another medicine in the hope that the two will work together to bring the proteins back under control. I'd be lying if I didn't say it concerned me, because I'll be taking more now than I did the last time I had to stop because it was making me sick.

Still, it's the most direct and simplest method to use at this point, so that's what we're going to try first. Complicated can always wait.

I will say this about being in the midst of treatment... Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. Cancer. We can pretty much talk about it all we want without feeling so much as a single stick poke.

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, March 24, 2016

Message in a not-a-bottle

Whew boy.

According to Blogspot, I've made 142 posts... in a row. No breaks. No missed weeks. In. A. Row.

I think that, through the vagaries of Blogspot's counting system, that number has actually gone down more than once, but I'm not sure and even so... Them's a lot of words. And, as I've said before, it's your doing- good, bad or indifferent, there wouldn't have been as many if it wasn't for you with you flippin' complements, your flippin' encouragement and your flippin' obvious interest in what I have to say.

By the way, the use of the word flippin' in these instances is derived from the manner in which the word is used in the Central Lowlands area of Scotland where I grew up. I've been led to believe this is the same way the word is used here on the far East Coast of the United States. Small world, ain't it?

It's no secret that I began writing this blog as part of my own way of dealing with the shock of being diagnosed with cancer. I saw it as an extension of the journaling I have done off and on through the years; a way of putting down these words in the hope that they might lead me to those words that, in the end, better tell what I'm reaching for, better explain how I'm feeling.

And that's true, as far as it goes. But, here's a true truth (and this is where you come in)... if I was still writing it principally for me, there wouldn't have been 143 in. A. Row. I believe I wrote something similar after 56 or so, and after 112 or so, and may well write the same thing again should the string continue.

A couple of paragraphs back, I wrote about the shock of cancer, and if you've had it, regardless of the type, you know that shock is the word. There should be a bigger, more horrifying word, but there isn't, so shock it is. But this type of shock is hardly the exclusive property of people with cancer. I know you've all had a diagnosis of something or other that has shocked you- pregnancies (planned or unplanned), heart ailments, brain ailments, and I can pretty much say from secondhand experience, broken bones.

But once the shock period passes... The writing issue reflects what happens in real life. When first diagnosed, people flock to your side, usually bringing food and offers to do anything they can to help. This phase is crucial for all of us when we're broken, regardless of how... and we need to let people help. It's selfish not to, even though you, like us, were probably brought up to automatically decline any offer of help.

But then, people wander back to their own lives, their own challenges. They're no less willing to help, the offers just become unspoken. The burden of getting help shifts to us because now we have as..as...ask for h...he...help.

You still have the issue, whatever it might be, but much of the time the only person you have to talk about it with is you, and usually in the wee hours of the morning. Look, my wife doesn't like it much when I talk about being alone with my big brain in the middle of the night. She wants... no, expects, me to wake her up and talk about it. But, since she, too, has to live with my cancer every waking moment, I'm unwilling to wake her up just so she can listen to my jumble of unformed thoughts, budding fears and a visit to the crypt of messes that is my brain at 3 am. Man, there are spiders in there! Big ones!

So this creates, for me, the perfect opportunity to skip a week in my writing, especially since so many people read what I have to say in the Kennebec Journal and Morning Sentinel where other needs sometimes preclude them from running my column. They have been absolutely wonderful about sharing my work with you and have played a pivotal role in reaching my overall goal: bringing hope and encouragement to as many people as possible. Sometimes, though, there are more important things they want to share with their readers and that makes perfect sense to me.

I have always written a blog, regardless. Again, if I skip once, skipping twice becomes easier. I was shuffling up to another of those decisions this week. I haven't been feeling well, at all, and... what harm could it do to skip a week? Then I get this voicemail (I am paraphrasing some, but never around the intent): “...Sorry you haven't been feeling so well, but there is a lot of support for you out here, even though we don't know you, have never met you. Please keep your blog going.” There was no name. No phone number. Just that heartfelt message.

So... 143.

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, March 17, 2016

It's National Myeloma Awareness Month

Happy National Myeloma Awareness Month.

No. Wait. That can't be right. Yes, March is National Myeloma Awareness Month, but I don't think it should be noted with a declaration like that.

I can tell you this, and from first hand experience, I think making the nation more aware of myeloma is a terrific thing to do. I know I was clueless right up to the time I found out I had it.

Here's how bad it was: When my family doctor sent me to have a CAT scan as part of my treatment following an attack by ground wasps that left me with 15 stings and sore ribs, the technician, during the pre-scan process, asked a bunch of questions, including, “Do you have multiple myeloma.” I had never heard of it and in what has to be one of, if not the, most ironic remarks in my own personal history, I said to him, “If I don't know what it is, I guess I can't have it.” And the Universe laughed.

He asked, by the way, because the normal dye enhancement used to improve the imaging shouldn't be used with myeloma patients. I'm not sure why, but it has to do, I think, with where the dye settles and how it is apt to throw off subsequent tests. Of course, given what I actually know about it, it could also be because left to its own devices the dye could spell out “Kilroy was here.”

There are times in writing this column, that I start down one road only to end up on another. As I write, if I'm as honest as I can be, things will pop up in my writing that I didn't even know I was thinking about.

In this case, I thought I was going to write about how my eating habits have been impacted by my disease, but...

While searching online for some information regarding dye and multiple myeloma, to try to bring some actual facts into this, I inadvertently misspelled dye as die. Or did I? I still got the types of sites I was looking for, but also these links: how do patients with multiple myeloma die; what is it like to die from multiple myeloma; how does one die from multiple myeloma; death multiple myeloma; dying multiple myeloma.

I don't think this is what was meant by multiple myeloma awareness month. The temptation to click on one, or more, of those things was strong. Way strong. I chose not to. Well, I chose not to... yet.

Why? As always, a good question. I'm sure denial is part of it. Fear? You bet. But there is also the truth that knowing any of what those links could tell me, wouldn't help me deal with the day in, day out struggle that living with multiple myeloma has become. It probably won't shine any light on why I feel so nauseous on so many mornings. And there probably wouldn't be anything on why certain areas hurt like heck some days and not at all on others.

I guess that's what my doctors are for. But they'll be the first to tell you they don't have all the answers because sometimes the answers don't currently exist.

I suppose web sites that focus on cancer, multiple myeloma in particular, could probably help. But I chose not to go on them. Frankly, it makes me feel bad to see so many bright and caring people talking about their disease, about how much they've learned about the disease that is so seriously impacting their lives. They all seem so... earnest.

In comparison, I just sit here and wear my ignorance like so many rags. With this blog, this column, I have the attention of thousands of people that I could inform, educate... enlighten.

Instead, I take pot shots at my multiple myeloma. Information? Give me the Joe Friday- just the facts ma'am. I don't feel bright, or informed and certainly not earnest. I know that in Space, no one can hear you scream, but, tell me, when you hide your head in the sand, does it make a plopping sound?

There is a high likelihood that I will die from multiple myeloma. I don't need the information in those links, or any others like them, to tell me that. But, what the heck, you've got to die of something.

I just can't force myself to take in knowledge that has nothing to do with changing that fact. I'm content with what I know about multiple myeloma and what it is doing to me. I'm glad that the bright, informed and earnest people on the web sites are bright, informed and earnest. I just know that looking at them makes me feel like I should be doing more when the fact is that I'm doing all that I possibly can.

Plop.

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, March 9, 2016

Going my way?

So, here I am on this journey called cancer.

Looking at it now, I feel like it began with me being thrown in the back of a car, blindfolded and then dropped on a back road in the middle of nowhere (which, given where we live, and if I'm going to be honest with you, could actually be just a couple of miles from our house), and told to find my way. Not my way home, mind you, but find my way to the next thing that happens. Get on that cancer path and go, mister.

I was allowed to take the blindfold off, so I can at least look for guideposts. Since I have no idea what I'm doing, let alone where I'm going, useful guideposts can be few are far between.

I suppose that “the next thing that happens,” is generally some special moment in time, some event that has an anniversary or something else special about it, and I get to check it off the list of things I wasn't sure I was going to live to see.

I was first diagnosed with multiple myeloma in September, so the first big thing I wondered about would be whether I would see Christmas that year. This was very early on, obviously, yet, to this day, I have never been given a prognosis, nor do I want one. Still, it became quickly apparent that we were talking months, years even, rather than weeks.

It's been just about 2 ½ years now, and Sheri and I are pretty happy about that. We've had three Christmases together; plenty of birthdays for ourselves, our children and out grandchildren. We saw our oldest grandson, Jacob, graduate from high school. Well, we didn't actually see him. I was going through a period where I was really too sick to travel, but at least we celebrated it, and there were pictures.

Sheri and I have had all that time together, to enjoy each others company and help each other over the rough bits, not the least of which was her current broken leg/ankle/sprained knee adventure.

And I was able to reunite (by phone) with a person who has been my friend longer than anyone currently in my life. That's Peters, whom I've mentioned before. At one time Peters was not his real name, it was his radio/TV name. But I guess he had it changed at some point in the 20 years we were out of touch and now it is his real name so I can't really give him a cool pseudonym like Walter or Sheila or Wanda June or Hank.

We met when he was doing news and I was the nighttime disc jockey at a small radio station in New York's Fingerlakes. We stayed in touch, no matter where life took us, for 20 years, then... we didn't, and now we do again. I'm glad I was around for that to happen.

He's currently head of my Greater Boise, Idaho, Area fan club. Besides him and his wife Bonnie (that is her real name), I'm not sure how many people that entails, exactly, but I have a feeling he isn't going to go broke spending money on postage to distribute the club newsletter.

I suppose you're probably wondering what's got me thinking about all this, since it isn't really a very cheery subject, or is it? Discuss.

Well, on April 6, I will have been in this country for 53 years. 53 years. We arrived from Scotland on a Saturday morning at New York's principal airport, when it was still named for the Idlewild Beach Golf Course that it displaced.

At first the anniversary was a big thing and I kept track, always aware when the date was approaching. Somewhere in the purple haze that was the early 1980s of my life, I stopped caring about it. I was here to stay and I'd been in America longer than I'd been in Scotland. Those seemed like the only good reasons to keep track.

So, my cancer journey continues, and we'll continue to make check marks on the way. Though I've never asked “Why me?”, no matter where we were in the journey, I would be lyin' if I said the thought hadn't crossed my mind: Would I have cancer if we had stayed in Scotland? But that's quickly followed by, “Who cares?” What I have is beyond my ability to express gratitude for, so what does it matter that I've also picked up a crappy little disease?

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, March 3, 2016

There is a pony, there is a pony, there is a pony ...

I still have cancer.

There was a time I knew what that meant.

You got sick, you had pain, you got treatment- radiation or chemotherapy- you got sicker, you got better, you might get sicker again.

Then, at the end of it all, you either got better and went back to living your life, all be it with a new understanding of how fragile an enterprise life was, or you didn't.

There you are. Cancer in a nutshell. You're welcome. Don't forget to tip your wait staff.

Of course, I knew all that before I actually got cancer. Then I was diagnosed with multiple myeloma, and it was then that I had cancer.

I initially saw the disease as a flat, static sort of thing. I had absolutely no idea how complicated a statement, “I have cancer” was.

My having cancer begins each morning with me lying in bed, trying to make up my mind whether or not I want to get up. There's nothing new about this. I've written about it before. What is new is the number of options I now need to review each morning.

Over the past year, the big dog in my get up/don't get up tussle, has been nausea. It's been a constant companion this past year, even more so than before. Feeling sick every day grinds you down. I fight to maintain a positive attitude, but when your eyes open in the morning, you take your quick inventory, and you realize you feel nauseous...again? Well, it can take quite a bit of rooting around the bed to find anything positive to make swinging your feet over the edge to begin your day your choice.

Then, too, having cancer isn't only about feeling nauseous. Multiple myeloma attacks your bones and there are times mine could probably file a detailed police report. I heard multiple myeloma described as turning your bones into cottage cheese. Nice thought, huh? Look, I've never liked cottage cheese as a food source because of its consistency. You can guess how I feel about it as a description of my bones.

There are so many times during the two and a half years I've had cancer where I've felt myself, shall we say, intellectually lacking in how I look at my disease. Remember when I used to write about my belief that I would be able to feel cancer eating through my body like Ms. PacMan? I didn't believe it wholeheartedly, perhaps, but I wasn't entire sure it might not happen. (It didn't.)

Having my cancer means being tired... a lot. I wrote about it last week, but last week isn't the only time I've felt like that. Take away all the crappy things that happened to Sheri and me to make us feel even worse, and we're still left with a fatigue that makes even the simplest task difficult some days. I hate having to take a nap in the afternoon. Hate it. Hate! It! Oh, well. Let's put it to a vote, nap or no nap?: Cancer, eleventy-seven gazillion for; Jim, one against. Lay your head down, kid.

You see what I mean about having cancer being complicated? Right? I've gone through a spell where deciding to get up has been tougher; where it was really easy to believe my bones had the consistency of cottage cheese, except that I didn't think cottage cheesy feeling could mean so much discomfort; where nap time could easily begin within minutes of waking up in the morning.

On top of all that, I'm going to be turning 67 in a little over a month, so there are days when I get to enjoy a new game: “Is it cancer or is it age?” That new pain in my side, back by my ribs... age or cancer? Is that bone supposed to bend like that? Age or cancer? Loss of appetite... age or cancer? And one that I would never, ever have spoken of in public, never mind written about prior to my current state: blocked bowels...age or cancer?

So, who says cancer has to be feared? Cancer scary. Hah, my Aunt Mary! I can entertain myself for hours playing “Age or Cancer?” There isn't even anyone to argue with me about which color I get to be or whether I can have the old shoe!

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