Monday, February 18, 2013

Words from Family

"You may ask yourself, well, how did I get here?"  This a line from the Talking Heads song Once in a Lifetime. I heard a live version of this song the other day. It still works. Many moons ago, my brother and I would take an annual camping trip. When we were young, the trip would be a week long backpack trip into the Sierras.Truly camping and truly roughing it. As we got a little older the week long backpack trip transitioned to a 3 or 4 day trip and then transitioned to a car camping trip. Eventually my brother and his family moved to Colorado and our trips were no more.

I remember driving up Highway 395 on the east side of the Sierras on one of our trips and Once in a Lifetime came on the radio. The song ended and my brother matter of factly asked the question "How did I get here". We were both young at the time, I was particularly young. I laughed when he asked the question. I said "no kidding, how did you get here?" I was referring to him being married with a couple of kids. I was single, kid free and couldn't imagine anyone wanting to be anything but that. I thought I was living the life. Married? Kids? Obligations? Not me.

Yesterday, we went to a talk given by my mom. She was talking about her work at the LA Craft and Folk Art museum. She's a wood worker and artist of some renown. Seriously talented. Her talk was great. I learned a few things that I hadn't known. She has a real natural, conversational method of speaking to groups. It's a great style that makes everyone comfortable. I need to try and emulate that. Anyhow, she was talking about her work over the years. And she mentioned how in her mind, her work has really changed a lot over the past 30 years. But, she said, that when you actually look at the work it's not that different. There is a connection to all her work and her changes were incremental.  I know her work, yet when I thought about it, she does have a distinct style. In my head, I thought about the Tipping Point by Malcolm Gladwell. It's one of my favorite books ever. It's about change or what it takes for something or someone to succeed. And sometimes it just a simple change or addition that sways the balance. It might be just a little thing that effects change. I thought, if you look at something in it's very infancy and then look at it towards the end of the might see a huge difference. But if you look at each successive step in that process...yeah, change was never that monumental.

Also recently my sister sent me a message. Her message asked the question why. Why did I get cancer? In my mind, I dealt with this question early on in the process. I think asking why was part of the grieving process, if you will. I remember sitting in Dr Phan's office early on, crying asking that exact question. Why me? What did I do wrong?  I don't ask that question any more. I think I said in a blog post several months ago, why not me. This can happen to anyone. And frankly, part of my mind has accepted that part of the reason for this is karma. If I were to answer my sister's question, I might say I had it coming. Probably not true. But what if it were true?

This brings me back to How did I get here? I'm doing pretty good. I have a great partner, a happy home and everything is pretty good. Pretty remarkable turnaround from 21 months ago. Today however we saw a nutritionist. My kidneys continue to slowly improve and we're looking to smartly expand my diet without adding additional strain on the kidneys. Generally a kidney diet aka a renal diet aka a horrible name means that I minimize phosphorus and potassium in the diet. No nuts, beans, dairy, soy, bananas and so on. I can start adding some of these things slowly into my diet. I can't go crazy, but I can have some variety. An incremental shift in my diet.

But going to the nutritionist and thinking about the fragility of my kidneys as a result of the pounding they took from the myeloma, was a bit sobering. I'm pretty much on cruise control right now and purposely try not to think about the big over riding cause of all this. My treatment and approach to the myeloma is all muscle memory now. I just do the things I need to. But when I think about it, I wonder how I got from my brother's 67 VW in the Sierras to where I am today. I am a totally different person now. I can barely recognize myself when I think of my younger self. How did I get here? Through small, incremental changes. There's a theme running through my whole life. Its all tied together.

Back to my sister's question. Maybe it shouldn't be why I got cancer. But instead it should be why did I make the choices I did. The thing is, that is unanswerable. We all just make our choices and hope for the best. Or we make choices without a single iota of a thought about the ramifications or fallout from our actions. We just do what we do.

I'm trying not to dwell on my past actions and how I could change them. But I do think I am solidly cautious and conservative and thoughtful about not repeating many mistakes and with somehow rectifying where I think I went wrong.  It's tricky. Even without myeloma, I think getting older and recognizing my mortality, would have me wondering about my place in the world and my reason for being and doing. It's probably a futile process. We might never be where we thought we'd be.  Perhaps I just keep doing what I do.

1 comment:

  1. Another great post. Thanks for sharing it! --Julee


Berenson Oncology Success Rate

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