Just wanted everyone to know that the tube is out. The removal was pain-free and we took advantage of the IV access to get me some fluids. I was a bit dehydrated.
I was an emotional wreck prior to the procedure because it felt like such a scary choice to make given how little I am eating. When the fellow came in to perform the procedure he clarified that there is not a current plan to do parental nutrition (via the bloodstream). When we confirmed this he probed further, "So this is a withdrawal of care," MD speak for "You've decided to die." He wasn't being nasty or anything; it's his job to ask these questions. We explained that the "next steps" were uncertain, but that the tube was too uncomfortable to remain in my system. The nurse and the fellow were wonderfully compassionate and gentle, making the experience physically very easy. When they were finished they asked if I needed anything else and I asked for a chaplain. With both Versed and Dilaudid on board I felt calm and I wanted to speak to someone while in this peaceful state.
The chaplain arrived and, like most chaplains I suppose, had an amazing air of peace about her. I told her that I felt like I was struggling so much because I always thought death would not be such a choice, that it would be out of my control. And, much to my surprise, I find myself faced with a series of choices that could hasten my death via starvation or potentially lengthen my life but carry a lot of additional suffering. I feel overwhelmed by the enormity of these decisions and the grim reality that there is no guidance except my own heart. And my own heart is so conflicted because I am afraid to suffer but I do not want to leave my children without a mother.
She reinforced to me many times that I have to make the choice for that is best for me. Multiple people have said this to me over the last week, one going so far as to say that the "Right choice for me is the right choice for everyone involved." It is so hard to trust that. It is so hard to know what to do.
I am reminded of my early twenties when I constantly engaged in what I called "One False Move" thinking. I was always afraid I'd miss that one phone call or party or whatever where my destiny lay and lose my chance at happiness. It was a ridiculous way to think, yet I spent years prostrate to this irrationality. And then my house burned down and I lost everything I owned in a matter of minutes. In the months following that loss, an enormous sense of peace settled into my life. I finally realized that happiness wasn't going to occur like some long-awaited event but rather already resided in me waiting to be set free.
So here I stand at the threshold of the end of my life, unprepared and scared despite all the forewarning. I keep thinking of Yogi Berra, "When you come to the fork in the road, take it." Yes, I must choose one way or another. What Yogi didn't say is "Don't look back." It's a recipe for misery to look at your past choices and think, "I should have done this; I should have done that." What's done is done. Maybe the chemo was a mistake; maybe the feeding tube was a mistake. Perhaps things would have turned out differently. But I made what I thought was the best choice at the time and hindsight is always too late by definition.
So where to go from here? I have no clue. We have calls in to both the parental nutrition folks and hospice care. We are gathering information for now. I have drank some cranberry juice and some orange juice so far. I plan to marshall the folks nearby who volunteered to help and ask them to make jello and pureed soups for me. I will do my best to eat and buy myself some time.
Soon I will go out to the patio and enjoy the sunshine on this glorious day. I will marvel at the Carolina blue sky, a sky that delights me as much now as when I first moved here from the gray Northeast. Then I will walk barefoot across my lawn, lush from the spring rains that ended our year-long drought. I'll smell the lavender and admire the lamb's ear that flourishes in the dry areas of our garden. I'll play fetch with Zara if only briefly. Then I will wait for the kids to descend from the bus and be grateful for one more day with them. And I will pray for peace and discernment and strength for all that lies ahead. Not just for me but for Bill and the kids as well.