Wednesday, March 5, 2014

Courage is in the eye of the beholder

I know I've said this before, but it makes me uncomfortable when people mention how courageous I am to be writing about my journey through cancer. I even feel pompous saying that. Yet it happens almost every day. I run into people I do not know who read my columns in the Kennebec Journal and Morning Sentinel and they talk about it. There are comments on Facebook that mention it. I get letters and emails from wonderful people I've never met saying the same thing. All that alone sounds crazy to me. I just started to write a blog about what it felt like to have cancer. I even got a postcard from an Augusta woman who was vacationing in St. John's to thank me for thanking her for a previous correspondence. Is it any wonder I have so much gratitude?

But about the idea of courage: It must seem almost arrogant; like I'm saying, “But wait. You people don't get it.” That's not it at all. Obviously that's what you see when you read what I write and I am so grateful that you do. Because the same people almost invariably mention how it helps them and that's one of the reasons I started writing in the first place. Any courage I have facing this illness I get from God and from you. Who said irony was dead?

Here's the thing, though. Almost anything I write is like a... I hate to say snapshot, but I guess that's what it is. It's how I feel at the time I am actually writing. I try to be honest about my feelings, and I think I am. But they tend to be tempered by my love for writing, and in truth, trying to be at least mildly entertaining, no matter what.

But there are truly dark times that sometimes Sheri doesn't even get to see, times when courage is nowhere to be found. Those are times I am incapable of writing. I am completely blocked off. Hell, I don't even like to consider what goes through my brain, never mind write about it.

In the early stages of this journey, those times would come and go so fast, they hardly registered. But now that there have been numerous complications, and it has became obvious that I truly am fighting for my life, they tend to linger. Yes, the truly black thoughts generally disappear fairly quickly; it would be impossible to go on, after all, with blackness as a constant companion. But they leave behind a residue of... despair? Sadness? They temper the joy that is such an important part of my life right now.

Sometimes, despite my best efforts, despite all your prayers and support, I find myself feeling scared. I hate the feeling, but so what? I don't like fear getting the upper hand, for even a day or two because... what if it doesn't leave? It always does, but suppose this time it doesn't?

What am I scared about? Not sure. It's not dying, because there's a lot of fight before that even enters the picture as a real possibility. Probably the lack on control is part of it. My oncologist at the Alfond Center told me I was one of them most willing patients he had ever had. That was good, since rarely in my life have I been described as “the most” with something positive at the end of it. Annoying, sarcastic, rude...these are my mosts, so it was nice of him to say that. But, my truth is... why would I be anything else? My doctors say “do this,” and I do it. Simple as that. I have complete faith that they know what's best for me, so of course I'm willing.

Sure, I may wonder, for example, when the bone densifier aimed at filling the holes in my bones caused my the myeloma makes my bones ache so bad it wakes me from a sound sleep. But they did tell me that would probably happen, so...

The BIG trust, though, comes with my stem cell transplant. I don't like to talk about it because it can easily sound as though I'm not grateful that I am strong enough to have it. Believe me, I have plenty of gratitude around it. It's just that it is a long, and to me, drawn out process that from all I have read, even from the Dana Farber Institute itself, says it could be a year, or more, before I get back to my pre-transplant energy levels.

In the original version of this blog/column, I described some of the detail of the transplant. Reading over it, though, it just seemed unnecessary. It felt like when your uncle comes up to you at a family event and starts to tell you all about his colonoscopy: “Really, Uncle Harry? I'm trying to eat over here. Besides, I think Aunt Esther is looking for you.”

The transplant is very serious business, obviously. A year or more seems like a very long time. So why do it? I'm willing, remember? Besides, without it I would be a lot worse off. The chromosome issue alone cuts your life expectancy, or length of remission, in about half. Since everything we are doing in this fight involves buying me time while doctors and scientists work on finding a cure, half is a lot to lose.

So I get scared. You talk about courage, and I think of the times I just want to curl up in a ball and suck my thumb. But, I guess we've all gotten it right. Any journey is going to have highs and lows; thumb sucking and displaying courage, and everything in between.

I think it goes back to a Jason Mraz lyric I have used before, from The Remedy (I Won't Worry): “I say the tragedy is are you going to spend the rest of your nights with the light on?” I guess my answer would be, “Not yet.”

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.”