Everything About You Is Bringin' Me Misery
Entry 1 9:09 a.m.
"Why he that cuts off twenty years of life
Cuts off so many years of fearing death.
Grant that, and death is a benefit."
-Wm. Shakespeare
Jenny's third friend with pancreatic cancer that she has made, is likely going on hospice today. She has to decide. There is one more drug that they can try with a 10% chance of working. By working, I presume it means slow down the process of dying, because there is no cure for stage IV metastatic pancreatic cancer.
Jenny spent much of yesterday again pleading and lamenting, and ultimately denying her life is foreshortened by PDAC. I don't think the latter is as meaningful as it once was, after the visit to the UW Liver Clinic, and after watching 3 people she befriended with the disease, each around her age, dying or rapidly heading toward the final reward. But I am wracked with sadness, for her pain, for her fear, for the battle ahead, and for the eventual cessation of hostilities with the cancer.
It's hard for me to modulate between compassion and standoffishness,. I tend to err toward the latter since el pinché's call after the visit to the Liver Clinic proved Jenny's lie that he is trying to repair his marriage and that they aren't involved and barely speak is bullshit. I spent a lot of time sitting on the opposite end of the couch feeling awkward, but not guilty, as Jenny was crying intermittently.
But it's hard to know what is real and what isn't, sometimes. For instance, as I was writing this, Jenny was downstairs getting her morning medicine. I hear her say "I am dizzy, I am so dizzy." Then she moans. I call to her but she doesn't respond. I rush downstairs to find her initally unresponsive and splayed between the refrigerator and the island countertop, face down. When I pull at her shoulder and tell her we need to go to hospital, and that I am calling an ambulance, she answers that she doesn't want to go. She just needs food and meds. She crawls to the couch. I bring her her meds and make her eggs. While I am doing this, she is turning on the TV, and a minute later it is as if we hadn't had that incident. Well, save for her reporting several times after arriving on the couch (and then between bites) that she is so dizzy. To be clear, I am certain she was dizzy. But she hadn't fainted, hadn't hit her head, and likely laid down on the floor--there was no crash, no thump. She is scared. I am not saying she was intentionally pretending that she had fallen to be malicious or to otherwise fool me. I'm not sure what I am saying other than she didn't faint, didn't fall. It was a call for attention, to be sure, and I dutifully answered.
Weirdly, the thing that cheered her up last night was her visit to the Georgetown Morgue, a haunted house. It was never an actual morgue, according to the research I have done, despite the stories floating around out there. I declined accompanying her.
This morning we discussed the need to be honest in our conversations with each other and with the kids about her disease. She agreed. She then said she thinks she has at least a year left. Who knows? Does this mean she has shifted toward acceptance? Doubtful.
Jenny's sister Chris called me at 7, purportedly to talk to me about mebendazole, a human dewormer drug that has shown promise in killing the remarkably dense tumors and metastases in pancreatic cancer in trials at Johns Hopkins. A doctor friend of ours picked up a 30 day supply in Tijuana for Jenny, and well, I would use it if it were me. But, it has been incredibly hard to ship to us, the post office returning it two times now. So, we are trying a third time, and barring a miracle, I will fly down to San Diego and pick it up myself if need be. But Chris told me on the phone for $900/month we can get it and three other unconventional drugs prescribed as complementary treatment from some US based outfit. But telling me all of this was just entrée for a discussion about whether Jenny would ever get to acceptance about the inevitability of the outcome of this disease. I said, I would think its hard to know how either Chris or I would be behaving, I would hope after this length of time, and the data--watching people die, hearing of the odds from every premier treatment center in the country--that I would hopefully have left denial and entered into an area where I was at least lurching toward acceptance. But, who knows? Also, Jenny seems to be on a journey akin to being carried in the jalopy from Tobacco Road. Going uphill, it lurches forward as the engine fails, but when the engine sputters, the brakes are shot so the car rolls back down hill until the engine turns over again. Essentially, Lenin's one step forward, two steps back. This is death. Who wouldn't be riding in that little black car?
What I know is that death is constantly on her mind, constantly on mine. This hasn't changed my perspective as much as clarified for me that this is it, the only ride. (So why should it change hers?) We have to get it right here, and I am afraid I don't have the ability to make that happen. I can make life better for those around me, for Jenny, which is not nothin'. But the infinite sadness I felt as a teenager when I understood that there is no moral compass, no absolutes, no god, and no way to understand the vast mystery of the universe, the pain that has infused most every interaction outside hormonal lust, is irreducible, ineradicable, indelible, inescapable. I tend to better understand, reflecting on my life today, why I am drawn to this verse in Buckets of Rain, profound in its simplicity:
Life is sad
Life is a bust
All ya can do is do what you must
Ya do what you can do and ya do it well
I'll do it for you,
Honey baby can't ya tell?
Entry 3 8:58 p.m.
Moni called this afternoon. Like Chris, she is concerned that Jenny hasn't come to terms with her fate. I was sympathetic. I told her its probably coming, that now rid of the cancer coach who encouraged denial she has to face facts, and after the UW Liver Tumor Center, she no longer has a place to hide from what is coming. How can anyone know how they would respond to death hanging over their head?
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