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.

Tombstone.

Guilt - Part 1

Part of the living with grief process involves living with guilt. I'll write a lot about this I suspect, which is why this particular post is called Part 1, of how many we shall see......could be a lot.

I'll start with the easy guilt, then eventually get into that deep guilt that involves tremendous shame and embarrassment. The easy guilt example for me is around house plants. Yup, house plants. Meagan had a whole interior sunroom devoted to plants. I laughingly called it the plant room. It had seating and furniture, but all sort of useless due to the profusion of plants everywhere (at least for a guy my size, Meagan could curl up pretty small). We struggled to maintain it during her long descent, and by the time Meagan died the plants weren't doing well. When I was in the immediate aftermath of death and soaked in grief, the last thing I wanted to do was take care of plants. Perhaps some would find the tending and care of plants therapeutic. Not me. It was another opportunity to have something die under my watch. I didn't know what they needed, nor wanted to be responsible for watering and feeding and actively promoting their demise through too much or not enough water, light, or nutrients.

So my sister and a friend did some culling. And I moved all the remaining plants but a couple outside - permanently. Not just in fair weather as in the past, but permanently. No hot house plants for me - they needed to make it outside like their outdoor plant cousins. Jungle rules.

I did allow a couple to stay in doors, which I have tended, despite ineptitude. A jade plant Meagan had for 30 years had a near death experience, but it has recovered, and now thrives, yes, inside the solarium (now repurposed as a sun room, with furniture and a human livable setting). As does one of her prized orchids, and some other curious plant (I have no idea what it is), but it seems to bloom continually and I am amused by its persistence, so keep watering it.

So the guilt. Guilty guilty guilty that all her lovely plants that went outdoors have pretty much bit the dust. I toss their husks in the yard recycle bin when I notice they have ceased operations, hoping their remnants wil serve as compost for a future plant tended more carefully by another. Guilty that the plant room meets my needs now as a sunroom, a place to read the paper when the day is nice but too cool to sit outside, or a place to hide when the house is full of young adults or the cleaning lady is vacuuming. Guilt that I'm slowly making this house my house, and even though I know she would be ok with it and want it for me, it still brings me pangs of guilt.

As much as I can write that last sentence, I know that there is one change in the house she would not like, and I'm lying if I write or say she'd be ok with it. It's not about plants - it's about her precious bathroom. The one with costume jewelry and hand painted shower curtain and quotes on the walls and jewel encrusted mirrors and all manner of bright baubles and treasures. It no longer exists, I did not want it to be a shrine, and it did not meet my needs as a guy's bathroom. So it's preserved in pictures only, and those will be bound into a book for kids and grandkids to remember Meagan's unique bathroom - a place of imagination and creativity and a testament to her artistic sensibilities and creative power. I feel guilty about getting rid of it. I don't think she'd approve. Even though I firmly believe she'd aprove of other house changes, such as the changed living room with the combination pool table/ping pong table as a place of socialization and gathering.

So as much as I live with grief, I live with guilt. It's always there too. I try to use it to really litmus test decisions I am contemplating, to make sure as best I can they are rooted in strong principles and things I care about, and not just doing it to make life easy or more convenient. I know some people who still have all their loved one's clothes and personal effects exactly they way they were at death, many months or years later. If that's what they need, that's good enough. If they were to get rid of it too soon, they'd be wracked with guilt. I got no guilt and a lot of pleasure out of giving away most of Meagan's clothes to friends and relatives, and nothing gave me more pleasure than to learn that one of her nieces was wearing Auntie Meagan's cowboy boots on Meagan's birthday.