Thursday, June 11, 2015

Yes. But that's not what I meant

Here's a question for you. Many of you continue to tell me what a good writer you think I am. And I appreciate that. Writing is a solitary act, so encouragement is a good thing. But do truly “good” writers have to begin so much of their work by having to further explain something they had written previously? They don't, do they? Poe never had to say, for example, “Now. About that Raven thing...”

Still, here I am again this week, after 101 blogs, saying, “There seemed to be quite a few people who were upset by my column last week, and in particular about what I had to say about dying with cancer rather than living with it. Let me explain...”

Brothers and sisters, I swear I knew exactly what I meant when I said that, but upon re-reading it after the concerns some of you had started to surface, I can easily see why you would wonder what the heck I was thinking.

The thought seems to go against the very core of what I believe, what I have been espousing in my writing. I continue to face my cancer on a daily basis and don't back away from the challenges. I am not sitting morosely pondering my demise, far from it.

But I am human. I have just gone through a period that I would call crappy, but I don't use words like crappy, so I have to come up with something else. In the past three or so weeks, I have spent more time feeling sick, tired, and discouraged than the rest of my time with cancer put together. I was lost, is what I was... Completely lost, with little idea of how to find my way back to expressing how I truly feel as we near the second anniversary of my diagnosis.

Add to that another issue with last week's remarks about dying with cancer rather than living with it... I forgot about one of the important factors I must- absolutely must- remember when I am writing or talking about cancer in general, but more important, about MY cancer. It's a hard and fast rule. Well, maybe not a rule, more of a guideline. Yeah. Guideline. Definitely just as suggestion.

Sheri and I, and to a certain extent my family, live with my cancer day in and day out. We can't get away from it. We try, and, we succeed more often than not. We have wonderful times together despite the fact that I have cancer.

But because we are never far away from knowing I have it, I tend to forget that cancer remains a scary word to a lot of people. I can't think of any health issue that has touched so many people. And when people have cancer, and they're people we love, we see pain and fear and sadness, but, if we're lucky, eventually we see happiness as the cancer loses its fight and some of its bite, for that matter.

So, I try to remind myself, constantly, that I can't talk about having cancer in any sort of casual manner. That I can't introduce the subject of death without clearly stipulating just exactly what it means to me... right now...while I'm writing about it THIS TIME.

And that, brothers and sisters, is what I did last week. I forgot that cancer and dying are big words, big concepts and can't just be dropped into a conversation, otherwise you end up spending another column trying to explain yourself.

So, to review. I remain optimistic in this struggle with multiple myeloma and will continue to poke the disease in the eye whenever I can. To that end, we have actually made a major change to how I am fighting this good fight.

Since my step cell transplant, I have been taking a maintenance dose of an oral chemotherapy drug. Both my oncologists left it to me to decide whether I wanted to do this or not. Since it seemed like one of the few active alternatives, I told them I wanted to try it.

The problem is that I have been so sick and so tired that I've really had to look at what's up with that? We have agreed I'll drop it from my regimen until my next monthly check up and see what happens. The “what happens” can be a little disconcerting, since it could, conceivably, mean the myeloma becomes active again. Our hand has been forced somewhat, though, because of the constant nausea and fatigue.

So... “what happens” it is. Obviously, you'll know as I know since I keep you aware of what's happening, even though it may take more than one whack to get the message across! Thanks for sticking with 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