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Thursday, January 12, 2017

A Note of Thanks



And when I think of God,
His son not sparing,
Sent Him to die,
I scarce can take it in;
That on the cross, my burden
gladly bearing He bled and died
to take away my sin

Then sings my soul
My Savior, God, to Thee
How great thou art

-- How Great Thou Art


We worked hard to get on the kidney transplant list. And we succeeded eventually. Then came the reality of how do you even get a kidney into your body; how does that even work?

It happens because someone is brave enough and cares enough to donate. Either directly to you ("living donor") or indirectly as an organ donor. The latter meaning that if you die under the right circumstances, your organs can be transplanted into someone else (usually many someone elses) that needs them.

This of course is predicated on a lot of very sophisticated medicine and surgery involving different disciplines.

Assuming there is a tissue match, kidney transplant generally then happens in one of two ways: either a healthy person donates one of theirs; or someone dies (under certain circumstances) and was an organ donor, or their family elects to donate their loved-one's organs.

When my medical odyssey began in 2014 I couldn't fathom accepting a kidney from someone else. First of all I didn't even like borrowing anyone's lawnmower. Kidney? Forget it. It seemed kind of weird to have someone else's organ put inside you; plus, how do you even ask for such a thing? This isn't like asking for a cup of sugar or lawnmower. How 'bout them Steelers? So, uh, how would you feel about getting knocked out for 4 hours and having a surgeon cut one of your major organs out so I can have it? Pass the salsa.   Awkward.

The alternative is unsettling, too. Why? Somebody has to die. It's impossible for me to root for this; I don't. But if you die, why not donate your organs? When my organs were still acceptable (obviously no-one wants them now) I was an organ donor. I chose to do it when I got my drivers license. It was one of the questions they asked me. I said 'yes'; it seemed right.

I was present when both my daughter and son were asked the same question when each got their drivers license. I didn't say anything, I let them think about that. They both said 'yes'. I think they've got a different perspective about it than most, having a dad that needs a donated organ makes it a real thing. So thanks to them, and all people like them.

In this country you have to opt in to organ donation. In some other countries, you have to opt out. In even others, you might be kidnapped or otherwise cut open against your will. Luckily we're not there. But why not opt in? There are so many people on the various organ wait lists, and so many people who could have otherwise donated their organs for which they no longer had any use. I'm pretty sure they're doing no good 6 feet under.

It makes some people uncomfortable, which is fair. Nobody wants to think about giving up parts of their body, even after they've passed away. If you want to take them with you into the grave, it's your choice. By why not give life instead? Donors give real life to those that need organs in a very real way. There are a lot of myths about organ donation, and yes it's a sensitive subject; but read what the Mayo Clinic has to say about it.

Being on dialysis for 32 months will change anyone's perspective. It certainly changed mine. Suddenly organ donation really means something, it's a real cause to be taken up. It was real before, I just didn't realize just how real it was, and how much real impact it has.

Living Donors

As I've said, I find it hard to ask anyone for this thing, to join me in this odyssey. It's no small task, in fact it's unbelievably difficult. I assume people won't do it, or more accurately I mean I make no assumptions whatsoever about it. I didn't know if anyone would do it; I never asked anyone directly. But a few brave people tried after they considered my situation. Unfortunately, none of them matched, so we still are waiting.

If you aren't a humble person, 
this will surely cure you of that.

One of the weird things about me is I'm often struck by out-of-the blue associations. From the book The Fountainhead, this sprung to mind:

But actually all we know of it is
the people we meet in our lifetime.
Look at them. Do you know any you'd
feel big and solemn about?


She was feeling forlorn, that really men always disappoint. Like hers, my answer, however, is 'yes', I do know some.

A few people did step up to the plate, so to speak, for me. I can't fathom that, but it's a demonstration of bravery and love you can't understand, really, until you picture yourself getting knocked out for 4 hours, cut open, and relieved of one of your major organs. For someone else.

If there are words for it, I can't summon them. "Thank you" seems, well, like not enough.

Saturday, January 7, 2017

It's Better to Burn Out ...


It's better to burn out
than to fade away


This quote is generally attributed to Neil Young, from his Rust Never Sleeps album in 1979. It was used later by Def Leppard on their 1983 Pyromania album. It was used later in the 1986 movie Highlander.

I'm not really a fan of Neil Young or of Def Leppard. I remembered it by the Highlander reference because it's one of my favorite movies.

This can be interpreted a few ways, or for you Kurt Cobain fans, tragically misinterpreted. Beyond this, these earlier quotes below illustrate more what I'm talking about here. The interpretation I'm looking for is one of living purposefully and not just fading into oblivion, not necessarily burning out like some rock star. Keep on trying; don't ever give up; leave some kind of legacy behind and positively impact anyone you can reach.

My candle burns at both ends
It will not last the night
But ah, my foes, and oh, my friends—
It gives a lovely light!

Edna St. Vincent Millay
This is the poetic winner.

A lot of this really applies to anyone's life, whether you have cancer or not. Our Earthly lives don't go on forever, so guard those minutes lest they slip away never to be lived again. If we can just achieve what Ms Millay is getting at. Hopefully our light falls on others in a way that is not only  lasting, but also bright and warm.

I try to keep a balance between living a "bucket-list" oriented life with one that is still active, but serves more purpose than fulfilling my personal wish-list. It's more important to me to spend time with my family, first and foremost; and with my close friends. In the end, it's all we have, and it's all I have energy for any more. Any "frenemies" situations or other man-made BS, douche-ery, self-righteousness, I'm not interested; at all. And I might just tell you so.

Treatment Burn-out


It's better to wear out
Than rust out

One of the flip-side views on this "burn out" interpretations hit me lately, too. Recently I've felt like I'm burned out on my treatment regimen: chemo every two weeks, dialysis labs once a month, dialysis clinic once a month, dialysis every single night. Throw in a few bonus labs and Duke or UNC visits.

I've said before our current life is like running to stand still. We're always chasing time around here. We have three children with a lot of activities, so balancing in full-time work and free time into all this is quite difficult. It might not seem like much, but see if you can take, on average, a two-hour chunk of time every single week, during work hours, dedicated to medical care. And time for scheduling appointments, talking to nurses, insurance, whatever. And days of degraded quality after chemo. The effects of it usually don't hit until some hours after treatment, meaning times after work when I'd rather be doing something else than laying in bed.

And take 10+ hours out of every 24 for dialysis; that's the real time killer. When I'm not too tired in the mornings, I do work or catch up on e-mails or social media (yea, I now do a little again), but not too often. Most days I'm very fatigued in the mornings. As I wrote before, cancer is hard, but on a day-to-day basis, dialysis sucks worse.

I'm still more of a night owl than a morning person. I always was. There's no option to go to bed at midnight and get up a 6am or 7am to beat the traffic any more. No stealing sleep time to make up for other things. Spending time in traffic seems like a ghastly thing to me now, such a waste of time. It's not like anyone else wants to waste their time sitting in traffic, either, but they can steal hours elsewhere; I can't.

Never Fade Away

This occurred to me a few weeks ago just when my head was getting shaved during a "second birthday" celebration. My buddies and I had pledged to shave our heads if we could raise some money for Duke and UNC Hopsitals, and we did, over $2000 in just about 10 days time.

The "it's better to burn out..." thought just popped into my head, mostly because of the image of the bald Kurgan saying it in the movie. I don't identify with going around terrorizing people in churches (or anywhere), but it was the image: I was becoming bald again; and what the hell, lately I had been feeling like I was fading away, and not burning; I needed to fix that.

Shine on, you crazy diamond.