Heart- and Cali-Flowering
Dear journal,
It was a long wait to see my oncologist a couple days ago, a necessary step before I can receive chemotherapy. We discussed how my CEA marker increased about 2 points from the reading a few weeks ago, and how it might indicate that my body has become resistant to my current medication protocol. It gets worrisome when a medication stops working, so our hearts sank at the possibility. I may be able to operate on the tumors in my lungs, to liberate them, and hopefully buy some time, but there needs to be some sufficient stability with ideally no tumor growth for this to be an option. My next CT scan in about a week will be key in showing the way. Now I’m trying to decide whether to cancel my trip to Okinawa. I was going to go in a couple weeks for a few days to close business bank accounts there, but if I do, that means delaying next steps with treatment decisions an additional 10 days. Would that be consequential? So many decisions are filled with these kinds of questions, these kinds of guessing, second-guessing, not really knowing. I have to remind myself not to lie all the responsibility about decisions on myself, on Gigi and I. It’s not fair to us, and it’s too much, because it’s impossible to capital-K Know. But I get the sense that it’s equally impossible to simply not have the feeling that “it is knowable,” or “I should know what to do.” Such natural thoughts, utterly human, supremely adaptive for the survival of our species, but abjectly tortuous in our situation. Fortunately, we can have mercy on one another.
I’ve been sojourning with Johann Sebatian Bach lately. Every day, actually. Seemingly a deeply spiritual man, raised in a Lutheran society, employed and encouraged by them. And so the other day I thought whether it would bring ease to my lot, whether it would create a physically felt sense of “it’ll be okay,” whether I could breathe easier, whether I could sleep better, whether the colors would be richer and the sounds fuller—whether all this might be more attainable if I believed God had a plan for me? If this breath was at least partially ordained, if these words I write were in a way "meant to be." Would this view give birth to more trust? Would it feel more natural to relinquish some of the oppressive impulse to control?
And so many decisions carry this additional second-guessing. Parts of us are such masterful second-guessers. If I eat this cake, does the added sugars aid tumor growth? Would developing a robust healing visualization practice boost my body’s immune defenses? It feels like my qigong practice is helpful, but does it add months or years to my mortality? And do the numbers even matter that much, so long as I’m living in the beautiful moment? A part of me just screams OF COURSE IT DOES! Or is all of this too much trying anyway?---the squirrely paradox of "trying to relax"; the work of healing vs. the allowing of healing; the peace of cultivating a quiet, merciful awareness OR building on the insights of how my lifelong affinity for subdued observation may be rooted in a conditioned but nevertheless pathological application of putting the brakes on my inborn urge to burst forth expansively and SING and DANCE and PROCLAIM from the glorious inner world that habit and personality has kept too hidden from the equally glorious outer world!! Frankly, the latter point governs many of the changes I’ve gone through since receiving a terminal diagnosis. It’s why I’m listening to the clear joy of Mozart’s piano sonatas now as I write. And it’s why I think I’m going to make these journal entries into a public blog for interested family and friends. For my blossoming in the fertile soil of grief plentiful in our communal gardens. But now I need to make lunch.
It was a long wait to see my oncologist a couple days ago, a necessary step before I can receive chemotherapy. We discussed how my CEA marker increased about 2 points from the reading a few weeks ago, and how it might indicate that my body has become resistant to my current medication protocol. It gets worrisome when a medication stops working, so our hearts sank at the possibility. I may be able to operate on the tumors in my lungs, to liberate them, and hopefully buy some time, but there needs to be some sufficient stability with ideally no tumor growth for this to be an option. My next CT scan in about a week will be key in showing the way. Now I’m trying to decide whether to cancel my trip to Okinawa. I was going to go in a couple weeks for a few days to close business bank accounts there, but if I do, that means delaying next steps with treatment decisions an additional 10 days. Would that be consequential? So many decisions are filled with these kinds of questions, these kinds of guessing, second-guessing, not really knowing. I have to remind myself not to lie all the responsibility about decisions on myself, on Gigi and I. It’s not fair to us, and it’s too much, because it’s impossible to capital-K Know. But I get the sense that it’s equally impossible to simply not have the feeling that “it is knowable,” or “I should know what to do.” Such natural thoughts, utterly human, supremely adaptive for the survival of our species, but abjectly tortuous in our situation. Fortunately, we can have mercy on one another.
I’ve been sojourning with Johann Sebatian Bach lately. Every day, actually. Seemingly a deeply spiritual man, raised in a Lutheran society, employed and encouraged by them. And so the other day I thought whether it would bring ease to my lot, whether it would create a physically felt sense of “it’ll be okay,” whether I could breathe easier, whether I could sleep better, whether the colors would be richer and the sounds fuller—whether all this might be more attainable if I believed God had a plan for me? If this breath was at least partially ordained, if these words I write were in a way "meant to be." Would this view give birth to more trust? Would it feel more natural to relinquish some of the oppressive impulse to control?
And so many decisions carry this additional second-guessing. Parts of us are such masterful second-guessers. If I eat this cake, does the added sugars aid tumor growth? Would developing a robust healing visualization practice boost my body’s immune defenses? It feels like my qigong practice is helpful, but does it add months or years to my mortality? And do the numbers even matter that much, so long as I’m living in the beautiful moment? A part of me just screams OF COURSE IT DOES! Or is all of this too much trying anyway?---the squirrely paradox of "trying to relax"; the work of healing vs. the allowing of healing; the peace of cultivating a quiet, merciful awareness OR building on the insights of how my lifelong affinity for subdued observation may be rooted in a conditioned but nevertheless pathological application of putting the brakes on my inborn urge to burst forth expansively and SING and DANCE and PROCLAIM from the glorious inner world that habit and personality has kept too hidden from the equally glorious outer world!! Frankly, the latter point governs many of the changes I’ve gone through since receiving a terminal diagnosis. It’s why I’m listening to the clear joy of Mozart’s piano sonatas now as I write. And it’s why I think I’m going to make these journal entries into a public blog for interested family and friends. For my blossoming in the fertile soil of grief plentiful in our communal gardens. But now I need to make lunch.
