First off, I have to share a concern. I wonder if playing the song “Jackson”- you know, “We got married in a fever, blah, blah, blah and we're going to Jackson....blah, blah, blah”- over and over in your head is some side effect of my new chemo that the doctors were afraid to tell me about.
I hate that frickin' song and have hated it for over 40 years. And to make it even worse as it plays in my head it is an amalgam of two different versions. The female part is Nancy Sinatra and the male is Johnny Cash. “We've been talkin' 'bout Jackson, ever since the fire went out.” What does that even mean???? Make it stop!!!
But, I soldier on.
We added some new bits to our treatment plan this week. We added a new chemotherapy drug aimed at reducing the effects of the chromosome deletion 17p we found out about when we were in Boston. Also put in the mix was a drug aimed at hastening the repair of damage done to my bones by the multiple myeloma.
The chemo involves an IV of liquids into which a five-second shot of the drug is added through the IV line. Completely painless. The bone densifier is also added to the fluids through a separate bag. Also completely painless. I hope that's not too much information. I figure inquiring minds probably would like to know.
I was concerned about the new drug- it certainly wasn't the one Huey Lewis was referring to back in the 80s- but I didn't really feel much worse than I had when I was only taking the one chemo pill. My bones hurt more than they did, but who the heck knows what that means. It could be the weather for all I know. And I feel more fatigued that before.
I am really tired much of the time. Now, I have pretty much ceased to be surprised by any irony in my situation. Still, one can't help but laugh at the fact that while the new medicines increase my fatigue, the new chemo also has the side affect of interfering with sleep. Seriously. I suppose there was a time when I would have been outraged. Now, I must confess, it's a case of “Of course it does.”
Though most often credited to legendary football coach Vince Lombardi, Shakespeare once wrote “Fatigue makes cowards of us all.” I think, to a certain extent, that's true. In my current situation, I feel coward is probably the wrong word...a bit strong.
Being as tired as I am, though, certainly impacts my ability to deal with things. It seems like I can either address my mental state and continue to fight the disease and its constant attempts to make me give up, or I can help Sheri switch over our cell phones to a new plan, or deal with some of the other cost-cutting ideas she's trying to incorporate into our lives as we consider the financial impact of my care, while we both turn 65 within two weeks of each other.
Sheri would never, ever ask me to do anything but to continue our fight, but it hurts my heart to see her have to do so much of this other stuff on her own. We've always done those sorts of things together, and now, because of this crappy cancer and a lousy genetic disorder- the odds against actually having, by the way, are up there in winning the lottery range- she has to do all that by herself, as well as worry about me and what I might need at any given time.
So, yeah, fatigue has a tremendous impact on my ability to cope, let alone dealing with “Jackson” ringing in my brain constantly. But here's the thing... Fatigue has no better shot at winning this fight than does multiple myeloma, or chromosome deletion 17p. Not now. Not today.
Each time it seems the scales are going to tip in their favor, that I'm. just. too. tired. I get an email from someone, or a text, or a note on Facebook, or run into someone in the street who tells me they have been following our struggle and how much it means to them that we remain positive and willing to share our fight so openly with others.
I really struggled with whether or not I should blog about this, or just keep it to my own journal. I chose to write about it openly because, as I've said here so often before, writing about things in my life is what I've always done. I also thought I might be able to help some people who couldn't express themselves as openly.
Well, fool that I sometimes can be, I had no idea that in telling you what is happening, I was giving you each a chance to help me. Duh. You have been wonderful. You have kept Sheri and me in the fight and that's where we're going to stay. There may come a time when I can no longer say that, but I can say it today.
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.”