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Wednesday, July 19, 2017

Parenting with Multiple Myeloma - Part I

When there's nowhere else to run
Is there room for one more son
One more son
If you can hold on
If you can hold on, hold on
I want to stand up, I want to let go
You know, you know - no you don't, you don't
I want to shine on in the hearts of men
I want a meaning from the back of my broken hand

-- The Killers

I've not written about this topic, partly because it's too difficult, but also because it is too vast for someone like me to put into words.

It might seem obvious to always take the "cancer hero" route and be the ideal person with cancer or the ideal person with kidney failure or the ideal whatever you can be. But we know (well, some of us know) being the ideal anything is impossible. But if we're not perfect, perhaps at least we can be excellent.

I don't know if as a parent I'm being excellent, a good role model, being a terrible one. Even in my previous life, I didn't know this; but I do the best I can. If you think you're the perfect parent, maybe you're right; but, I seriously doubt it, you're almost surely deluding yourself.

Life doesn't go in a straight line. Life isn't fair; and teaching your children by example how to deal with the nasty underside of Life counts; perhaps more than teaching them how simple it is to breeze through the good times. But when things take a nasty turn away from just the average "bummer", then what?

With so much going on in our new normal life, the clinic visits twice a month, the chemo twice a month, the insurance / benefits problems as a result, the full-time job, and everything else that fills a life with 3 kids, I sometimes feel exasperated. Even without The Malady hanging on you on a daily basis, life with 3 teenagers is challenging. Even so, you want to set a positive example.

I am lucky, because my kids are great. I mean they have had to deal with some scary, real-life issues that many adults remain oblivious to; and they've held it together. For the past three years it wasn't just my own life going sideways, it was all of us.

We came close together in a way not possible before.

What to Say, What to Tell

My long-time friend Gray S. talked about this topic on more than one occasion while he was counseling me. At first my wife and I did not know what or how to tell the kids. Part of you wants to protect and shield them from the reality of what's going on. Probably because you can barely deal with it yourself, you assume there is no way a child could. But they're no dummies, and when they see you in the hospital with tubes coming out of you, or with no hair, they know something's up.

Our youngest boy was about 10 and out of school ill the day I got my Multiple Myeloma diagnosis. He was in the room with me and my wife at the time the doctor delivered the Unfortunate News. I remember feeling worse for him, because I didn't want him to have to deal with this, and especially did not want him to witness The Ugly Truth in this manner. I could see in my own mind the shockwave of this explosion crashing over him.

So you'd better think of something.

Are Things OK?

Bottom line was we wanted never to lie to our kids, but we didn't necessarily want the unfiltered story to get to them. Sometimes as it's unfolding, the story isn't known, so what can you possibly say? They needed to know what was going on, in an age-appropriate way. Kids are scared easily and they want stability. Like most of us. They want to know first and foremost if you're "going to be ok", if "things are going to be ok" If so, life can go on far as they're concerned, and that's more or less ok, and that can be that for a while. All the conditions and possibilities do not need to be enumerated, nor can they always be. Many adults can't grasp them.

Kids are more resilient than we often give them credit for.

This is the hard part of Multiple Myeloma in particular: there is no cure. In some cases remission can last a long time (many years), the disease can be managed; sometimes not. How long? No-one can say. Certainly in my case no-one can say, or has said. In late 2014 you wouldn't take a bet that I'd last this long. But you don't focus on these things when talking to the kids.

You wouldn't say every day as you were leaving for work, "Bye Johnny, I'm heading out, I might get killed in a car accident today." Or whatever; there are always conditional statements you can make, even if some of them are theoretical risks as opposed to real ones.

Lies, Damned Lies, and Statistics

Statistics are of little use to an individual cancer patient; they only show the past, and in aggregate. At first (and many times after) you want to know where your "dot" is gong to land on that "survivability" chart. But no-one can tell you in any certain terms. The data are often older, and the assumptions of the studies might or might not have taken into account your particular set of response variables. So even if they put yours into the equation(s), the answers come with sufficiently wide confidence intervals. Meaning: nobody can say for sure what the hell is going to happen to you.

The news is: everyone dies, but in the cancer patient's eyes, that day is presumably coming sooner than it otherwise would. I wrote earlier about this notion of theoretical risk and actual risk. Adults are not very good at accepting odds or averages under these conditions, so how can a child be? These are the things I think it does not pay to worry children over, especially young ones.

So, are there two different truths, or the same one presented differently? Do we always emphasize the positive outcomes to our kids (or even others), but harbor the negative ones for ourselves? "Dad's got a bad cancer, but many people live a long time" vs. "Dad's got a bad cancer and one of his friends with the same kind just died."

Where do we come down on this issue? We can't lie and say that things are "looking great" when we know you might keel over next week. Can we?

I think here this is where the difference in attitude or your point of view comes in to play. Like the old "cup half full" problem, you can play it either way. But having survived this long I do believe that focussing on positive outcomes without losing site of the reality makes a real difference. Statistics and medical science can't keep up or explain these effects, even though I believe them to be true.

People will bitch equally about the cup being half-full 
or being half-empty; either view can be an annoyance to the other.

No Free Passes on Kids' Problems

Once a nurse said to me, "I wish when someone got cancer they got a free pass from all the stuff like colds and other minor ailments." I wish that, too.

Kids' problems do not go on holiday when you have cancer. And in fact they may get some new ones as a result because their coping skills are not mature. It's unfortunate that we don't get these free passes, because with everything else, who needs more problems?

The other thing you don't think about until it happens is how your kids' friends will react. Kids are funny this way. If your parent is sick or otherwise not normal, this is a opening kids can cruelly use against each other. Childhood is a strange juxtaposition of individuality and conformity. Kids endlessly claim to be individual, but conformity is the norm.

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