Saturday, October 21, 2017

Life Moves Pretty Fast


Life moves pretty fast.
If you don't stop and look around
once in a while, you could miss it.
Ferris Bueller

It's true, the pace of life nowadays is blinding. You see most people running this way and that, mostly with their face cast downward to their smart-phone. This relatively new invention might be the stupidest thing ever invented.

I find the volume of information enabled by these devices to be a din, a cacophony of widespread free-association tidbits of not-quite finished thoughts, tossed out for a moment's consideration only to be plowed under by the next wave.

I see younger people texting and "socializing" over this layer of technology even when they're in the same room, sitting around the same table, or whatever. I'm seemingly always running my sons off of screens during the sunny weekend days. But, it's not just them, it's seemingly everyone. At fire-side gatherings, dinners, parties, even on the highway, there's that familiar picture of someone gazing at the phone, hoping to catch the next trending zinger, or hoping not to miss out on that latest post or e-mail.



A lot has been written on this topic, so I'm not going any further. I certainly have done my share of staring at my own smart-phone.

But when we step back, look up, and look around? Life is still zooming by!

Happy Birthday

So what was the real reason behind this blog post?

Today is my daughter's 19th birthday!


I was looking at pictures and so on on my computer, remembering all those things we've done over the years. It occurred to me in a real way how fast life goes by. Seems like yesterday we were driving to the hospital to get her delivered.


I started collecting up the photos and before I knew it there we were: together all these 19 years. My daughter has been there for me through thick and thin, and we've spent so many times together. 

video

Here they are, some of them, brought together in a short tribute to our relationship.

Happy Birthday to my loving daughter, Amelia!



Tuesday, July 25, 2017

Parenting with Multiple Myeloma -- Part II



My riding partner used to work for a living
He take the backseat of all that he was given

He let you rise and take the fall
...
He'll take the chain
He'll take the ball
He was my favorite friend of all


-- Kings of Leon


Not too long ago we had one of those family meetings with one of our kids. These are the ones you don't want to have, but in order to keep your kids on track, they need to happen. We're pretty progressive in our parenting; at least compared to how we were brought up, or compare to what you would assume if you knew were, say, church-going-believers. That's not to say we've abandoned everything we learned from our own parents or the old time believers. Much of what we stand for came from them; but also it's tempered by our own decades of living, and it's colored by the realities of modern life. In end, though, we are also pretty strict when it comes to the relatively few requirements we place on our kids.

Having cancer doesn't give you a free pass 
from family problems.

In the end I think the only real end goal I can fight for is: I hope my kids accept that we are always their friend; and we always have been. It might seem to them like we're tyrants and our rules are arbitrary; or that we're hard on them. We require excellence, but give freedom. We're not placating, but we are encouraging. We do not foster false hopes. We make the hard decisions and we stay true to our beliefs. Like any good friend, we do not allow our kids to live up to less. We're not necessarily always friendly.




For me the scene above always delivered a strong message of love between two people. In this case it's two people from different cultures, different values, different pasts and futures. But some things translate. Friends do not always get along. Friends sometimes tell you the hard truths, ones that lesser people would let slip by. Sometimes friends have to let you find out for yourself. But in the end, different people can connect to and love each other.

Seeing my kids grow up and now depart from the nest (as it were) brings to mind such devotion. To understand, you need to watch the movie closely, and you have to watch a child grow and become an adult. The two men in this scene are not initially friendly, and in fact the one declaring the friendship was the more reluctant one. Parents aren't usually on the more-reluctance side, but my sentiment to my children is the same.

The other aspect of the video is that kids give back to you something that you thought you'd lost. But it's something you needed all along. They had it, but in the end you're glad they had it, and when they give it back it's more.

Sometimes our kids feel like we're coming down on them or being too strict, or whatever. Sometimes it feels like we're pressing too many rules. When they are heading out on their own into an unknown future, one thing I hope they remember is we are their friends, we will always be their friend.

Do you see that you are my friend?
Can you see that I will always be your friend?

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.


Monday, June 5, 2017

If you hate me, you won't miss me

So when you call up that shrink in Beverly Hills
You know the one, Dr. Everything'll-Be-Alright
Instead of asking him how much of your time is left
Ask him how much of your mind, baby

'Cause in this life
Things are much harder than in the afterworld
In this life
You're on your own
-- Prince

I found at various stages I was doing things that were counter to: my beliefs; the way I wanted to live; what people who knew me expected. These are some of those things: my flaws (well, some of them!) spelled out here. You may find it surprising I did these things; maybe not. Maybe they're normal.

I hesitated to put these out here because I don't see them as textbook cancer coping stuff. Or maybe they are. I don't have that textbook. Perhaps they cast me in a poor light, illustrate my true failings. If you find these strange or unbelievable, you try it. Take up the mantle and go for it. The mantle's "C"-shaped, heavy as hell, and fits right around your neck. But really you can only experience it if it's real: it's not like the heavy bat you swing the on-deck circle to train yourself for the real thing.

Be it wise or not to show it, and for what it's worth, here are some of my top "do-not's".



I'll spare you the pain and anguish 
you'll feel when I'm gone by being a dick now.

Well, this was a behavior I made famous with my family first. The logic is quite convoluted; maybe. I found myself pushing away from those I loved the most. I was generally snapping at them and being an ass. Why? I sometimes felt I didn't want them to feel so bad when I was gone: if I was rude or harsh towards them now, it would alleviate the pain and I could save them from it because they'd be really be sick of me. If I acted so heroic, brave, graceful, the model of cancer copingness, it would just make things that much worse. Wouldn't it?

This is false: the people who love you will be crushed when you're gone, no matter what, and no matter when, cancer or hit-by-bus or hit-by-asteroid. Better to continually strengthen your relationships than wreck them. Plus, you don't know when you're going to get removed from the game board whether you have cancer or don't. And as far as my kids go, it's better to handle this with grace and bravery than dick-ness: they're watching and might need these skills some day. Being angry and lashing out is easy. While it happens, and it's ok for kids to see this, too, it shouldn't persist. Finding and taking a higher road is hard, but ultimately it's the only way to go. Finding help is not a sign of weakness, it's a sign of your humanity.

You can't spare your loved ones or friends from reality, so make the best of it. Play the hand you were dealt. A lot of people have it worse, and while that's not necessarily a rallying point, take advantage of the time you do have. Especially relish those days which are cancer-free (remission) when and if you can. We (patients) have to accept this; and our friends and family have to accept it, too.



Everything's pointless.

At times it seems like: what's the point of anything. Cancer will jolt you to your most inner self. You re-examine your values, your own self worth, and where you fit in to the universe. The sober reality is we are physically insignificant within our vast universe; but our existence brings with its own real significance. It makes our time here most valuable.

People have struggled with these questions for all of history. As far as anyone's own life goes, what is the point of anything? Why bother at all? Following this logic, we should all just off ourselves and that would be the end of us. But this isn't our destiny or purpose.

Each of us has to define what is valuable to us, what is meaningful, and think about how to attain it. We do it consciously or not, explicitly or not, but it has to happen. Having cancer is a painfully sobering event that makes you re-evaluate all this. The good thing is generally cancer patients, at least the ones I've talked to, are more reflective and actually focus only on those things that are really important to them. Staring into the stark blackness of non-existence and getting away bring a new perspective.

If you otherwise asked yourself honestly what your set of important things is, your set of things would overlap significantly with ours, I think. We've just realized the importance and fleeting nature of it. Mostly everyone else carries on like the sun is coming up tomorrow and will keep doing so next day and the next, and so on, and as long as nothing changes they can pretend it's all good and they don't have much to worry about. Which is a good, typically Westernly-modern, place to be in; until you're not in it any more and can't go back. On the collision course with reality, reality always wins. You can't pretend forever; and you can't, don't, and never did control it.

The ones with kids or families are focused on them even more so. That new car or house or phone somehow seem less important, negligible really. They were not important before, but for some reason we thought they were, and we chased them because we thought we had a luxury which we did not: time. There's always time to worry about the important stuff, tomorrow, right? There isn't.

A cancer diagnosis gives you a chance to re-evaluate this inversion, so don't shy away from it. Someone you know might have gotten this diagnosis, too, so maybe it affects you, too. Make it clear to yourself what's important to you. Everything else left over is then probably in fact pointless, or at most quite secondary; but those important things are the meaning of life.

I have re-dedicated myself to my faith, family. I have also taken renewed interest in my work. I didn't choose my career path because I thought it would be really lucrative. It did need to pay the bills, but really I do something I love, so doing it with vigor is still important to me. If you're going to do something, it's worth doing it well, or doing it the best.

Also, I have a renewed interest in in music and art; I didn't really realize how important to me art was, be it paintings, sculpture, photography, ballet, plays, musicals. Artists make us see and feel things we wouldn't otherwise and in ways we wouldn't, and we can resonate with them in those moments. Not pointless. These connections are just as real and just as important as any scientific discovery and understanding.

Some things that were previously tolerable I do find utterly pointless now, true. The neighborhood gossip? Who the f___ cares? I couldn't care less back in high school when this drama mattered; and if juvenile behavior and mean-girl shit still gets you off, go away and enjoy that crap elsewhere.



Social media isn't actually social, 
it's a bunch of perfunctory BS.

This is one where I think I am mostly right. Initially I did not want news of my diagnoses to go out on social media sites like Twitter and Facebook; in fact I forbade it at first. Part of the reason I think is valid, the other part maybe not so much. I did not want rumors to spread, etc, and I was definitely not up for the "rah rah get well" comments or third-hand opinions about what treatment choices I should be making.

My wife did set up Caring-Bridge journal to consolidate the news and information we needed to get out to a wider audience. This method worked well and in hindsight I wish I had taken a bigger part in it at the time. I didn't really keep a journal day to day and part of me wishes I had, even if it wasn't on-line.

I also developed a total intolerance of Facebook, I closed my account about 18 months after I was diagnosed. I lost my tolerance for what I considered to be socially extracurricular crap. I tried again, but closed it again. I mean people pore over this stuff constantly.

I could not bear the thought of putting my cancer life out there on some quickly-scrolling event feed, soon to be displaced by cat videos. I did not want to be some trending topic that flared up with a bunch of perfunctory likes and "be brave" and "stay strong" comments. Sorry, you're not getting away so easy. If you're interested in my well-being, be invested; or do not be at all.

Social media's not the place for it far as I'm concerned: it's for the social fanfare and the next fodder for viral sensation. My friends are on there, and they are not perfunctory in real life. Rather, it's the media that makes the perfunctory social interactions here.
d
The most touching and meaningful social interactions I had of course were in real life. Others came in the mail in the form of hand-written notes from some close friends. This is social interaction, taking the time to have a 1-on-1 relationship. It's not some mass pouring out of daily stream-of-consciousness which might garner you 20 likes. If you're doing "social media", keep it social and don't be too serious there.



Help? No thanks; don't need it.

I really struggled with this at first. Self-sufficiency was always an ideal of mine. At first I didn't want to believe I needed help, so asking for it was not natural. But when you fight cancer, you can't fight it alone. No-one needs to fight it alone, no-one can fight it alone.

One of the first things you lose when you go into the hospital is your dignity. You soon get reminded of your biological underpinnings. The second thing you should consider losing is your inability to ask for and receive help.

People want to help. People need to help. Let people help.



Playing that cancer card.

When we first had kids, the babies sometimes served a less than noble purpose: excuse to opt out of things you didn't want to do, or cut short visits or activities you didn't really want to do. "Well, the baby ... " You know what I'm talking about if you have kids.

Cancer isn't much different. If you don't feel like doing something, well you have a built in excuse. I'm not saying you should go to that party even if you had chemo today. It's the other stuff, the events you are afraid to go to, or you're afraid to leave the house, or you just want special treatment.

When I first got home from my stem cell transplant, I had a list as long as your arm of things I couldn't do, eat, and places I couldn't go, people I couldn't see. I know some people ignore these warnings, like even though their white cell count is negligible, they're not listening to anyone about going over to Golden Corral to get the special and put their fingers in the chocolate fountain. I mean what the hell do these doctors know, anyway?

It's hard to undo becoming a hermit, and you might be one for similar reasons. Eventually, though, if you health allows it, you have to get back to life. This is hard. As an example, my group of friends goes out about every Sunday during NFL season to catch the night game. I used to be in on this regularly, but after I got sick, forget it. I couldn't go for various reasons, and eventually my friends stop asking, they assume I can't or won't. I have to ask explicitly to be re-included, which I am, and eventually things get back to (mostly) normal.

In the meantime, sometimes I felt the urge to play that cancer card. "I can't, not feeling well because of chemo". "I can't do that because my feet are numb due to chemo". I'll just stay here in my house. Forever. I'll commute from my house to the doctor and back and that's about it. Do dishes? Ugh, that darn chemo. Scrub the toilet? Did you know I have cancer? Mow the lawn? Not feeling so well. Go to the movies? Out to eat? Well, normally I would, but damn, that white cell count. Uggh.

Someone at the DMV hassling me? Did I mention I have cancer? Can't get parking where you want? I'm handicapped. Deadline at work? Well, I wasn't feeling so well this week, all those chemo appointments, you know. 

Did I mention the chemo and the dialysis? And did I mention. .. .. The Cancer?


Boom! that's one mother f*cking trump card 
you can slap down pretty much any time you want. 

Do not play on people's natural desire to pity you. I often wanted people to treat me as if nothing was wrong with me. But at the same time I also wanted to reserve this trump card. To be fair, something is in fact wrong, but put it in perspective with the need to get back to normal life.




Thursday, February 16, 2017

REM

It's the end of the world as we know it
And I feel fine
-- REM

I found moving from actively battling cancer to survivor-ship has been surprisingly difficult. Imagine picking up the pieces of your life after the "C" word has been dropped on you. This moment is forever etched in your memory, available for playing back any time you want; and sometimes when you don't want.

Like learning to walk again, you're not quite sure when you're really ready. It takes active thought to do, it's not a natural involuntary action. It seems strange at first, like you're walking some kind of tightrope, just waiting to fall off. But eventually you begin to trust again. The shock knocked you back, but hey, you man up, put this stuff in the back of your mind and move on. You move on, but like someone shell-shocked, it would be a bad idea to sneak up behind and clap your hands.

I've never been a 'hooray for everything' kind of person, and I find it hard to delude myself this way. I'm not a negative person; I am as realistic as I can allow myself to be. I like a positive, can-do-ish attitude, but some people have the needle pushed a little too far to the right.

One of the bothersome things about kidney cancer is its tendency to spread, usually first to your lungs. My kidney cancer ("the easy one") was removed along with my left kidney and the tumor was fully contained within, no evidence it had spread. Chance of recurrence in the other kidney? About 2 percent after 2 years, and I've gone past that so far so good. Easy. Right? Done and gone. One cancer beat. But, that dark possibility sort of tick-tocks in the back of your head, even after you say you've moved on.

The "other" REM


Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

-- Paul Simon

Several days ago I woke up in one of those moods. I had chemo the day before. It sometimes gives me horrible nightmares and other weird dreams. This night it did, it was particularly bad, and it left me in a real mood. You know the feeling: dreams are sometimes easy to forget even though they leave their emotional footprint behind.

I was in near breakdown mode, but my wife helped me, as usual. Negativity sometimes tries to creep in, but usually I can avert it by re-focusing on positive things. Sometimes, though, I can feel the mood slipping over to the dark side, and I can't stop it. This is another learned skill, but it doesn't always work. This time I couldn't stop it; like a car trying to get up an icy hill, it didn't work. Finally I settled down and I began my routine to go to work, but I was still brooding.

Panic at the Sink


While brushing my teeth I began to cough a bit, and what comes up is a shot of wet, coagulated blood. Scary looking. Then more coughing and more blood, now mixed with some that was quite bright red.

With the powder keg set and the fuse short, it suddenly struck me again:

it's spread to my lungs. And
this is the beginning of the end for me.

At this point my life began to flash by in mental images, like some stop-action movie, each image landing with a forceful punch, sadness and downright panic. Mostly I saw my kids having to grow up without me, one of the worst feelings I have as a parent. Like the floor just opened up and you're falling down. All over again.

But recovering from such terror is a learned skill, recovering enough to function in the moment. We had some mad scrambling around, but I got in touch with one of my oncology nurses and explained what happened. Not too much longer and we were heading to the radiologist for a chest x-ray. Just to see if there's anything "going on" in there.

After an hour or so, we found out it was something going on in there: just a touch of pneumonia. Thank goodness it's only pneumonia.

You're in a weird place when pneumonia is the good news.

But in the end, that's all it was. I never felt bad; I hadn't really noticed, other than a bit of coughing. So here we are, moving on again....

Even though you tell yourself (or others) you've moved on, sometimes you really haven't. But these shocks can help you see that. So, while it can be ugly or scary, I try to make it useful, too. I have to turn these bad things to good to cope and improve my overall state. It is hard sometimes, that is the reality, but I am winning. Like any fight you’re going to take a few punches that hurt. You have to turn them around is all.

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.

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