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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.
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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.




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