Things feel complicated right now. (With good reason, I might add.) In addition to my CT scan on 5/7 and my oncology appointment on 5/8, I have an appointment with my primary care physician on 5/10 to discuss the implications of liver failure, and what kind of planning we can do. I'm told by Reliable Sources that one of the best uses of a written care plan is to remind the patient of decisions they made when their head was clear. Irrational behavior and cognitive deficits are a common feature of progressive liver failure. To that same end, we have requested an appointment with the oncology department's staff nutritionist to talk about the kinds of food choices that can help my liver the most as it degrades, while also being compatible with chemotherapy nutrition guidelines. Even if I somehow squeak past the current round of issues without hitting the end game, all these factors will apply soon enough.
The timing of JayCon XIII (June 15th) is such that if we hit a terminal diagnosis next month, I may reconfigure the event to be my pre-mortem wake. That will require some serious logistical thinking, including possibly a hotel contract, which may in turn be impossible to get on such short notice. We shall see. The longer I wait, the harder it will be to plan such an event.
Whole Genome Sequencing
I have a phone consultation later this week with the computational biology consultancy who are performing the clinical analysis and recommendations for the Whole Genome Sequencing. I truly do not know what to expect. My hope is that we identify some alternate treatment paths that might buy me life extension for a year or two. I think we've slid well past the tipping point of being able to cure me — certainly that's the overwhelming medical evidence. This might come to nought, it might be significant. Once again, I want to thank everyone who made this possible.
We've decided to bring
People Doing Things
An author friend recently sent me a story that was a sort of love letter about cancer, writing and death. Another writer sent me an impassioned handwritten note about the friendship they regret we will never be able to fully develop. An online acquaintance did some hilarious art. People are doing things which touch my heart, make me weep and make me smile. This is good. This is also very strange. There's a part of me that keeps expecting to wake up from the nightmare. To discover it's all been a horrible mistake and I am fine. The words and deeds of others help keep me centered and sane.
I'm acquiring what I've privately dubbed "death head". That is to say, the imminent reality of my cancer's end game is becoming far more real to me. In point of fact, this has been the case since the rather grim January surgical outcomes. It's just this new evidence of elevated CEA levels has propelled me into the next stage of my emotional journey. In effect, I am learning how to die. And I'm trying to teach the people around me how to help me die. This pops up in almost every aspect of my life, and I'm far from having a handle on it. I'll be discussing death head more over the coming weeks and months. For now, suffice to say I'm rapidly evolving a very different outlook on life, my personal priorities, and what's important enough to require my commitment of attention and resources.