Sunday, October 23, 2016

This whole quality of life thing is pretty tricky

So, I would choose to be with you
That's if the choice were mine to make
But you can make decisions too
And you can have this heart to break
And so it goes, and so it goes
And you're the only one who knows
Billy Joel


Sheri, my daughters Jennifer, Alison and Kristie and son Jason, and friends like not-his-real-name Walter having been talking a lot lately about quality of life in face of my new, groundbreaking cancer treatment.

Quality of life is just another one of those things I totally got wrong at the beginning of my treatments for multiple myeloma. If you've been with us since the beginning, you know I've been spectacularly wrong in a lot of my assumptions about having cancer.

Some were admittedly silly: being able to sense the cancer cells running around my body like Ms. Pacman gobbling up whatever it is that Ms. Pacman gobbles up. Some were probably overoptimistic. I thought my stem cell transplant would have had a far greater effect that it has done.

The truth is, though, that the transplant was a game changer. It hammered the myeloma pretty good and, if not for separate stomach issues, I would have been able to enjoy a few months' respite.

But the thing with quality of life... First off, I certainly thought it should be in capital letters- not all caps, I hate that- but definitely a Capital Q, Small o, Capital L, Quality of Life!

Big ticket items all around. Bucket lists, living every day as if it were my last, expressing the love I have for family and friends in big and important ways EVERY (O.K, there the caps seemed necessary) day. And perhaps that's the way it would have been if I had a definite prognosis with a fairly dependable date of expiration. I mean, if I was told I had six months to live and optimistically doubled it to nine to 12, I may have felt more of an urgency to do those things. After all, a prognosis is as apt to be wrong on the short side as on the long.

But, that hasn't been the case. From the very get go Sheri and I, and my doctors, both here and in Boston, have been adamant about the lack of a point in trying to figure out how long I would have to live with this multiple myeloma. They pointed out that almost every case of cancer is unique to the person who has it, and probably even more so with a blood cancer like multiple myeloma.

So, our considerations of the quality of life in our case slowly but surely started to shift. For me, at least it culminated in the past couple of weeks when two wonderful things made an appearance on our own time line.

First, Sheri and I celebrated our 20th wedding anniversary. Before we appeared before our family and friends to exchange our vows in public, our wonderful pastor insisted on meeting with us privately to go over those vows so we would be perfectly clear on what it was we were pledging one to another before God and our friends and family.

“When we're down there,” he told us (as I recall), “you're going to be so worried about not embarrassing yourselves, you won't really be aware of what you're telling one another.” It was a serious moment. I was actually taken aback with the weight of the decision we had made; the life we would be entering into. Brothers and Sisters, I had no idea.

In sickness and in health, good times and bad. Love and support and trust in God. Yeah, 20 years of that and then some. That decision, and that journey with Sheri, has made it possible for me to face cancer with the belief that the odds are in my favor.

The second big event was the initial results from my new treatment. After having gone up every month since December (remember up is bad), my kappa light chain protein numbers not only dropped, but plummeted from 71.2 to 1.01. Whaaaat? Everyone was shocked, including my primary care doctor up here. Since the procedure we're going through is so new, and there aren't a lot of documented results in my clinic, we're not entirely sure what it means. But, we do know it is wonderful. Amazing!

And this is when the switch in quality of life in our situation really meant became rock-solid apparent, once and for all. With two wonderful life events to celebrate, I put in one of the worst couple of weeks I've had since we began. The new treatment really knocked me on my butt and left me with very little energy to enjoy the grand things happening around me.

See, the side effects of treatment are really more of an issue most of the time, at least in how I feel on a daily basis, than the cancer itself. And, in the grand scheme of things, that's what the quality of life comes down to, isn't.

My one constant refrain when talking to Sheri about this is: I would just like to go to sleep at night, or during my daily nap, and wake up feeling not ill. Feeling good would be great, but for me, right now, quality of life comes down to not feeling ill, and even more so, not feeling so exhausted.

So in the meantime, the treatments continue and Sheri and I move through our 21st year happy to be together and sharing the vows our pastor made such a point of our understanding. Thanks, Bill (his real name).

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, October 2, 2016

Oh, yeah. Happy anniversary

Lies that life is black and white
Spoke from my skull...
Ah, but I was so much older then,
I'm younger than that now”
Bob Dylan

Lost in all the kerfuffle around my latest treatment is the fact that it has been three years since I was diagnosed with multiple myeloma.

Actually, three years plus a few days, but considering the questions and mystery surrounding the initial diagnosis, three years seems like a safe enough anniversary to mark.

The beginning of a journey is always... well, exiting if nothing else. Somewhere in yourself, you know there are going to be highs, lows and middles. Whether it be something wonderful, like a trip to Disney World or some other long-dreamed of place; or merely mundane, though pleasant, like the annual visit to family around an annual event (reunion, Thanksgiving, etc.)... highs, lows middles.

As it begins, I think, as humans, we focus on the highs. Everyone on the trip will be on their best behavior, all connections will be made, and fatigue will be manageable.

In truth...not so much.

Still, when I found out I had multiple myeloma, a rare, incurable, but treatable, form of cancer, after the initial shock, it appears I decided to make the best of it. I mean, I didn't have a discussion with myself, nor did I confer with Sheri on whether or not to be positive, negative, fatalistic or what. I just decided to keep my oncologist appointments and do what came next.

Before I started “Finding the Pony,” I did some journaling, off and on, for the first few weeks. I decided to look back and found, as would be expected, plenty of confusion and more micro managing than I would have thought it possible for one man to carry. Every twitch of pain, every disruption of sleep, every doctor's visit was held up to the bright light of worry, scrutinized and assigned an importance it could not possibly hold.

Amidst all this flaffery, fluffery and over thinking, I even misunderstood what multiple myeloma actually was. Probably because it was lesions in my bones showing up on a CAT scan that was one of the confirming factors in my diagnosis, I thought it was a bone marrow cancer. Is there even such a classification? As we well know now, it is a blood cancer, and a tricky little bugger at that.

Despite all that there was the occasional moment of clarity: Oct. 17, 20013- So, I begin treatment in earnest tomorrow. I am more than ready. There is some trepidation about how tired and/or ill I may get, but I really want to start doing something about the cancer itself. So, let's go, right?” True dat.

And here we are three years later, still standing, still showing up for my oncologist appointments and doing what comes next. Like any journey, there have been highs and lows. In something of a reverse of what I wrote before, going into this I think I expected more minuses than pluses, more lows than highs, and yet, I can't say that's how it's been.

There have been far more many highs than lows. Through all the different treatments, and through all the different kinds of pain, there's been a focus to things in my life; a better, though not perfect, understanding of what's important, what matters and a willingness to accept the love people have been heaping on me virtually since day one.

Reading through the pages of my journal, I also found this, which, frankly, describes the most important thing I have learned in all of this: “Late September, 2013: Just looking back at the cards and letters Sheri and I exchanged when we first started going out... It was crazy, terrific and tough. But these, right now, are the days when love shows. Not just being sick, but growing older, sharing our latest fears and successes, loving our lives together. The beginning, when it was crazy, is not to be lamented. It was wonderful and difficult, and sooo worth it all... because we needed that to bring us to this.”

Happy anniversary to all of us. You have been an important part of my journey and I thank you for 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