Thursday, February 28, 2013

Couldda, shouldda, wouldaa....

One of the things that tore me up for quite some time after Meagan's death was the angst over what I could have done, or should have done to prevent the progression of the disease or different decisions about treatment or non-treatment I could have made (after the point she was capable of making them). So post-death I had a lot of grief about the loss of her life and the whole trauma associated the impact on me and my family, but also had this nagging and somewhat inconsolable grief associated with my role in her dying.

I would replay the tape in my head about all the various inflection points where important decisions had to be made, and question whether I had really done enough. Some decisions, such as when to cease treatment of any sort, made in consultation with her oncologist, were obvious on the surface, but because of their import, were highly traumatic. Others weren't as clear. We had been ready to go back to Washington D.C. to the National Cancer Institute for clinical trials when she had her stroke. It eliminated her from those trials. I called around to various cancer centers trying to gain access to possible treatments, only got turned down (once melanoma goes to the brain it is almost always fatal, and therefore you are a poor clinical trial prospect....). But did I call enough places? State the case forcefully enough? Slide her into a program based on compassionate use?

So part of the grieving process for me was about self-doubt and guilt over possible bad decisions or not trying hard enough. Fortunately I had an experience that laid those issues to rest and helped me change my thinking. In March of last year (2012) I went on an 8 day 800 mile cycling trip that did a loop out of Tucson, AZ, run by a tour company. Besides being a way to relaunch my cycling efforts, I thought that a seriously hard effort like this would be meditative and cathartic in some way. For me physical activity, and cycling in particular, has been therapeutic and calming, relieving stress, allowing me to be fully present, and in a tangential way, doing a gut check for how much I can endure.

Along with 26 other guys we took off. When you are riding like this you don't ride all together as I do with my local team or weekend ride groups. You might go off in the morning with a couple guys, then based on pace preferences, spread out. At rest stops and lunch breaks you gather in small groups, and maybe ride off with different people. There is a tendency to connect with certain people based on similar athletic ability and personality and during the course of the riding days you have some conversation. I ended up riding with a couple guys a bit older than me, but similar fitness level, who knew each other.

After the first day riding with them I discovered that one was a brain cancer doctor from Philadelphia, who himself had metastatic melanoma several decades ago, and had been one of the few survivors. Peter was an absolute gem. We had many stretches of riding side by side on long desert roads where we talked about cancer, treatments, and death. He knew a lot of the docs and places I had tried to get Meagan in to see. Unlike anyone else perhaps, he was able to put my mind at ease, and say very explicitly, "you did all you could, you did all anyone could, once it went to her brain it was not a question of if, but when, and you took very good care of her".

What are the odds that on this adventure, I'd meet this guy, and get the right message to help me deal with my grief? Amazing. So I no longer stress or fret about the course of her disease and what happened. Acceptance has brought a measure of relief.

The final irony of the trip, besides meeting Peter, was that we were in pretty desolate riding country out there in SE Arizona. We stayed in some tiny places - not more than a roadside motel and gas station at an intersection of the highways in some cases. One of the last nights was at a point when I was ready to come home, and get on with real life. I'd had the conversations with Peter, felt at ease over that aspect of my grief, but was feeling pretty lonely. These were all pretty hard core riders and there wasn't any socializing in the evenings - it was pretty much wolf down some food at whatever joint was available, then go back to the room to tend your beat up body and take care of your bike and gear. Sitting in the bleak room it dawned on me the irony of the name of the town.


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