Thursday, September 5, 2013

A Selfish Endeavor

There's a scene in the movie The Jerk with Steve Martin where he is waiting for the delivery of the new phone book.  He's super anxious up to see his name in print.  When the new phone book arrives, he rifles through the pages, finds his name and yells "I made it. I'm somebody!!" The movie was in the late 70s for you kids reading this. Although I doubt a lot of younger folks are reading posts from a middle age myeloma survivor.

This week I've been waiting and waiting for the latest edition of Momentum Magazine to come out.  I did my interview and photo shoot a couple of months ago.  It's a short piece about the importance of bicycling to my cancer recovery.   The issue finally came out earlier this week.  I'm not yet able to get an electronic version to share.  But you can find the magazine in your local Barnes and Noble, bike shops or you can buy a digital issue for $1.99.  When I saw my picture and name and my story, I was fired up. I nearly screamed "I made it, I'm somebody".  But it got me thinking, why am I getting so excited. Sure it's cool to see our name in print.  But it's there because of my cancer.  So perhaps I ought to slow my roll, and be less excited.

I mean it is cool. For me it's motivation and a nice reminder of how far I've come in this battle.  I thought I'd never ride to work again, and now I ride almost every day. And I hope that it gives some motivation to others that we can fight through this crap.  I've never been one to seek attention, so it feels a bit funny being excited about this.

When I was first diagnosed, I didn't want to talk to anyone. It's a pretty shocking thing to hear you have an incurable cancer.  Mind you, I'm at 28 months and doing well, and planning on growing old.   I got a whole bunch of emails and messages wishing me well, people sending words of wisdom.  One thing I got was an email that said I'll beat this thing and go back to living that life of mine,  Those words stuck with me.  I read between the lines and took the message to mean that I've been living a selfish life and doing my own thing. Living that life of mine.  As I have reflected on my past (which I do a lot less of now, it's pointless, we need to look forward) (Satchel Paige once said "don't look back, somebody might be gaining on you), I do think I was a bit selfish and self concerned and self absorbed.  But I had set myself up for that.  I liked it. I came and went as I wanted. I used to try and travel somewhere once a month. It was easy. I had no mortgage, no wife, no dog, no kids. Pretty foot loose and fancy free.

I've changed. Cancer/myeloma tends to do that.  When you get down to it, dealing with a disease and ensuring you are focused on your recovery is in and of itself a selfish act.  In many ways, I'm way more all about me. More so than ever before.  How I interact with people, what I allow myself to do,  everything I do is geared at keeping me alive and functioning at a high level.  You can't be anymore self centered than that. Sounds weird, but that's kind of how it is.  It's not a bad thing.  People should always be concerned about number 1. You are your biggest advocate.  And that's me, I've become my own fan.  Self confidence was hard to come by for decades for me. Even while living that life of mine, I was shaky about who I was.  No more. I'm clear on that. 

Lately, I've been thinking about what it means to live that life of mine.  I can't do what I once did. I can't get on a plane to visit people every two or three weeks. I have a mortgage, a wife, a dog, a job, bills, obligations.  I can't grab a bud light at 10 in the morning and watch football in a vegas casino any time the itch hits me.  But part of me, misses that.  Life was so easy.

I'm guessing many patients feel at times they want to say fuck it, I'm going out in a blaze of glory.  A friend and fellow myeloma survivor just mentioned to me that she was questioning the point of saving for retirement.  What is the point?  If you look at the survival rates for this thing, a long retirement is not statistically in the cards.  But is it a given for anyone? Life is pretty much a giant mystery and crap shoot.  Anything can happen to anyone at any time.  So how do we balance the uncertainty surrounding us with needing to be prepared for the future.   What stops any one for living large?  Like I said I am 28 months in to myeloma and am planning to be around for a long ass time.  But then again, there are times I wonder why the hell I'm putting on slacks and a work shirt every damn day for work when I should be embracing the world and life.  I need to experience stuff before it's too late.  I feel good. I have energy to do stuff.  But I'm in my routine. The routine is kind of necessary.

I think I need to expand my selfish side.  I've been getting a bit lazy with my diet and other things I need to do to stay healthy.  I had acupuncture last week. I should go every month or even every two weeks.  It's important to my recovery.  When I went last week it was the first time in many months. That is not acceptable.  

The show Breaking Bad is winding down.  The final 4 episodes are coming up. It's been on for 5 seasons.  The basic premise of the show is that a chemistry teacher is diagnosed with a likely terminal cancer.  He wants to take care of his family before he goes, so he starts cooking and dealing meth to make extra money.  It's a fascinating transformation that Walter White, the main character, goes through.  But the underlying foundation to the whole show, is that he thought he was going to die and he figured what the heck, he's going to do whatever it takes to ensure his family is taken care of. All of his actions through the five seasons have roots in his cancer diagnosis.  At least that's how I see it.  And I get it.

All of my actions should be founded in my diagnosis. I should do whatever it takes to stay alive and to make sure that Leslie, Gracie and the people I love are safe and secure when I'm gone.  But if I want to embrace life and break out of the 9 to 5 routine, that would mean doing the exact opposite. If I only thought about me and thought about today, I'm not doing much to take care of others.  So what the heck? Where and how do you balance these things?

It's been a while since I've written this sort of philosophical, inward looking post.  I figured folks were tired of reading about. And I was tired of listening to myself.  I'm cruising along, and myeloma hasn't been effecting my life.  Last week and even this week, I've been a bit more tired than usual.  Paranoia sets in that the myeloma is coming back. My numbers don't look so bad, so I think I'm still holding steady. Tomorrow is Berenson and we'll get the full scope on my condition. Likely, nothing changes...knock on wood. tap, tap, tap.  But being tired does raise the question about my mortality and what the heck I am doing.  Do I become more selfish and live it up? Drinks on me!!!

As I said, just battling myeloma or cancer or any disease is a selfish endeavor.  I'm thinking about me all the time.  That's not to say I don't think about others. I do. More so than ever before.  I think all my emotions and capacities have expanded hugely in the past 28 months.  A fellow patient just told me I should do meditation and yoga to ward off the worry. Worrying never accomplishes anything and doesn't change things. Meditation and yoga will help clear my mind and improve my control over my body.  Selfish goals. Yet so crucial.

What's the wrap up here? I'm selfish. I care about others. I miss my old life. I like my new life.  And so on and so on.  Me, me, me. Tap, tap, tap.

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.