Treating my cancer is not just about good doctors, good nurses and support staff, excellent facilities and the right mix of medicines and procedures. It's also about money, about cost.
Let me make this perfectly clear: I have no complaints about what things cost. I look around me when I'm at either of the facilities that are providing my treatments and I see how much has been invested in order for me to receive the terrific care that I do.
Not that we don't bitch about it, which I suppose is the same as complaining, actually. We do. But it isn't about the cost, really, it's about what we have to do to meet the cost. Sheri and I have both been on the phone for hours in the past few days talking about prescription costs, trying to find lodging for the four to six weeks Sheri will have to stay in Boston, and so many other seemingly minor details that each afternoon has ended with us emotionally overwhelmed and in serious need of naps.
I must confess that I am not now, nor have I ever been, a details kind of guy. I've been more the “I'm gonna blow this off because it makes my brain hurt” sort of person. Since I have generally surrounded myself with excellent people who have accepted this about me, and taken care of the details for me, I've had a fair amount of success throughout the years, despite myself.
This cancer fight, though, is different. Yes, there are plenty of resources to reach out to for help; more than I would ever have imagined. But details are where they live. Forms, paperwork, telephone interviews, questionnaires, surveys... aaarrrgh. Sheri took care of much of the initial grunt work, but there's just too much.
I am currently taking 15 medicines, not counting the chemo for my chromosome deletion and the bone densifier to repair the damage done by the myeloma. Only the acetaminophen and St. Joseph's baby aspirin (yeah, I take baby aspirin. Wanna make something of it?) are non-prescription. We have had to call numerous sources to try to determine how much each of those medicines will cost once we switch to Medicare; me in April, Sheri in May. You would think the answers would be easy to find, we did in what we refer to as our naïve period.
And none of this is blow off able, or blow-offable, or blowoffable. (I have editors, known and unknown, who read this and I have to at least act like style is a passing concern.) It all matters because this is my life, we're talking about. Is it overwhelming? You bet. Is it emotionally difficult? Uh huh. Do we wish it was different? Every day.
Sheri and I are in this together. You who are regular readers know this. We have been since the night my GP told me he thought I had multiple myeloma when I thought I had suffered minor rib damage. But let's face it, when people ask us about my cancer, the chromosome deletion, how we are dealing with it, they don't always know what to say, but the genuine concern and support they show, spoken or not, is an important part of this journey.
But the financial matters have been something we've just been dealing with on our own. Honestly, who ever wants to hear anyone bitch about money? Not me.
Now, I realize that I have pretty much blown that approach by blabbing about it here. But I have always tried to write about what is happening right now; what twists and turns our journey has taken. The past few days have been about the financial aspects and they have truly sucked, but that doesn't diminish its place in this journey.
I watch my wife make phone call after phone call trying to arrange lodging for herself, trying to nail down costs for drugs, filling out applications for grants to help defray expenses, and there are times I just feel bad for being the cause of all this. I know I know, that makes no sense. I didn't ask for this. I didn't cause this. But there you are. Think it I do. Well, doesn't that sound just a little Yoda-ish?
Like most things that enter my brain, that thought doesn't stick. Not only does Sheri never complain (about this), she continually reminds me that we are working at saving my life, so why wouldn't we work so hard at it? Well, sure, when you put it that way.
Most of the work has paid off, by the way. There are details to be completed, but we'll manage. Sacrifices to be made? Yes. But they are sacrifices we can make, and willingly. When all is said and done we still end up with a tremendous amount of gratitude. There are so many people in our situation who are just lost in this financial swamp. They've already sacrificed so much, and it isn't enough.
As for Sheri and I? This situation makes us uncomfortable, with a side order of worry. But discomfort doesn't kill you and worry doesn't last because it's exhausting. We don't have to have our friends organize fundraisers for us. We just need them to continue doing what they've been doing. Show their love and concern for us every day. Me and Lou Gehrig baby- the luckiest men on the face of the earth.
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.”