Wednesday, December 28, 2011

Forget How To Die



Death is inevitable and the honest truth is that regrets, I’ve had a few but then again too few to mention. Learning lessons from mistakes have been good for me to reflect on. But what you regret and what you learn from may be two different things and as I sit here a few days away from the end of the year in what (I hope) will always be the strangest year of my life. But with some medical appointments coming up, I realize the new beginnings have some good lessons.

Money still matters but probably less than I thought a year ago. I worried about all the medical bills when they were coming in since some of the things I did were considered optional and I was not prepared for a medical emergency of this magnitude but there are more important things than owing money. I follow the health care debate about all types of things but since all of this stuff started, I look at the end of life issues more than is probably wise. My grandmother died of Alzheimers, the same part of the brain that we notice the wear on this tumor will eat at if it grows again (memory and language). That a woman who helped raise me recognized neither me nor her husband of 70 years in the end is not a pleasant memory. There were some serious risks to the surgery and when we had the all-in poker game, a friend who shall remain nameless, took me outside after the poker game and had a very heavy heart to heart conversation how about if he was in my shoes, he would have a euthanasia plan to not be a burden on his family emotionally and financially if he came out with serious complications from the surgery. My little brother lives in Oregon where physician assisted death is legal and Texas where the Futile Law Care exists and it would be less than honest to say I didn’t consider some of that stuff. Nothing was put into place other than a DNR order then but since the divorce, there’s literally a plan in place if this stuff comes back and is an end sentence to where I’ll sell the house and have only supervised visits since I’d be more likely to have a seizure. There was a lot of crying on my part when that was being drawn out.

I notice when I can’t remember phone numbers like I used to or make silly mistakes and wonder if it’s the tumor growing. Some friends remind me that single parenthood is hard and I'm keeping track of more than I ever had and that the memory like other parts of the body can be exhausted from overuse. The first time we did the neuropsychological we did it in 8 hours and I barely blinked. The second time we did it over two 4 hour periods so that exhaustion wouldn't be a factor since it was shortly after the surgery. This time we're doing it the second way per the neuro psychologist's recommendation. I try to suppress a natural frustration that some of the things I was supposed to be watching out for I missed because I was struck by a divorce that I never saw coming and not paying attention to medical and mental details. I can’t understand Kiana's mom’s timing or methodology or even simple things like the fact that in our standard visitation schedule she gets our daughter for most of the Christmas break but isn’t spending it all with her. And I try to balance the fact that I was literally listening and writing before the surgery that she may be the reason I survive, the why and wherefore I’m alive. I wonder in that silly magical thinking if the way I think doesn’t affect whether or not my brain cancer grew or is growing. Attitude has been shown to be a driving force in health but really in brain cancer?

I had never signed up for short term disability and long term disability before this and am no longer eligible but get excited about the fact that my employer just signed up with a new long term care program. Because it’s a new enrollment you can sign up at the initial thing no matter what pre-existing conditions you may have unlike the disability plans. I am and was the guy who loved seeing the wonders of the world ancient, modern and human, has won races, won tournaments and raised money for charities. I get thrilled to see Kiana do a drawing or give me a hug or paint my toenails. But now I am also the guy that gets pumped that if you’re under 35 it’s only $5 a month and that you can take it with you even if you leave the company as long as you keep paying it because that makes the if-this-returns-decision of having to sit there and fade away easier to contemplate because at least you know it’s not costing your family a fortune.

I’d never taken the Livestrong Bracelet off since getting it but did so recently as overwhelmed with fear about whether or not the way I handled my emotions and ideas about dying, cancer and finances had pushed someone I loved away. But the best kind of love accepts your humanity and helps you try to be better at it. And the best people in my life the last year have realized that sometimes the stupid things I say is fear disguised as logic. The Bracelet was back on after a few moments and I wonder if love means anything at all, it’s that big life decisions, crisis and opportunities are a huge cliff to jump off and maybe all you can manage in all good relationships is to accept each other’s humanity and hold hands on the way down.

Balancing going with the flow and living life on purpose is something this is teaching me to improve on (having an almost 5 year old girl that I have most of the time helps with that as well). I sit here and read the anti-cancer books and change my diet and keep exercising, trying to ignore the stated fact that for this particular type of cancer there are no known dietary, lifestyle, genetic or environmental components. I meet with a minister each week from the Job ministries, a guy whose there to pray and help you through hard times, I rarely miss a running workout, I try to pretend like what’s on my mind isn’t on my mind and achieve it most of the time. There are times as I sit here reflecting about these medical appointments that we have to do now more regularly than I initially anticipated. I’ve started to understand some of that survivor’s guilt that some soldier friend’s on mine have about their comrades when people say my father, brother, etc died of it (the most recent one was a teller who noticed the scar and started telling me how her aunt was dying of the same thing and has gone home refusing treatment to wait it out). With that survivor's guilt I wonder if I'd be better or worse with a soldier's wife.

There was on odd thought that a non survivor's relative shared about how cancer cells are the ones that have forgotten how to die. Here’s hoping those cells don't remember they are alive and that the good ones in my brain don’t forget how to live.

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