Dear Fund donors —
This is one of the most difficult things I’ve ever had to write. Pete is still with us, but has decided that he cannot fight this fight any longer. Here is a window into what I have witnessed behind the scenes: I have never seen someone battle in such a heroic way in my life. Starting last summer when we first discovered that there were possible cures available for the very deadly pancreatic cancer he has, Pete was informed that if he tolerated the Abraxane/GEM chemo protocol that he was on, and if his numbers continued to fall, he would be a good candidate for the trial at the end of the year. In an effort to continue to be in the trial he essentially poisoned himself, refusing to complain or change course, with a 100% dosage for over 6 months (apparently a very rare thing) to get himself to the finish line when the next trial was scheduled to start.
He was hospitalised more than once with septicaemia due to the toxic levels of chemo in his body. He compared it to a Russian-style nerve agent poisoning. His glorious brain went deeper and deeper into a state of confusion and he had trouble thinking straight. His body started falling apart and his usually exquisite sense of ultimate limb and body control started to abandon him, and he began to take frightening falls. But this reaction to the chemo was all in service of his making it to the trial so he continued on, even though the whole thing was devastating and brutal.
When the time for the trial came, when we launched this GoFundMe, we were threading a needle. He had gone off the chemo to give his broken body and mind a break. The original lab in Portugal that was going to do the trial did not have their new lab ready and so sent him to a new-to-our-team lab in Germany. Pete’s team in the UK waited quite a while to put him back on a chemo protocol. When they did put him back on, they chose a protocol that had been more tolerable for him during his first bout in 2021, when they were trying to get him operable (and did!). As this chemo pause and shift to a new team was taking place, his once very low cancer markers were rapidly, more rapidly than anyone thought would have happened, rising in his body.
He was recently put back on Folfirinox, his once well-tolerated chemo protocol, and he just could not spend another day on it. It was terrible for him. The lab in Germany did the initial evaluation of his tumour and blood at a cost of €16k from this GoFundMe fund (which cannot be refunded), and found things there that have given them some optimism, but the vaccine takes 10-12 weeks to produce, and without a chemo protocol keeping him alive, he more than likely doesn’t have those weeks left to wait.
He is being put in palliative care now. The world is losing one of the greatest musicians, rhythmic theorists and just lovely and decent human beings ever to exist. I am heartbroken. I have been privileged to have met him when I was 19. We were a romantic couple when we were kids, from the time I was 20 until I was 25. We were in 2 amazing bands together. And he has allowed me to go on this illness and end-of-life journey with him. He is truly a hero to me.
His wife Cheryl is a beautiful human being. They have been together for 20 years. They adore one another. She is the perfect partner for him. Calm and loving. Understanding and kind. Smart and practical. I’ve seen over the years how much he loves her. I am heartbroken for her too.
He’s been extremely nervous about this GoFundMe should we have needed to halt it for any reason. He’s been incredibly touched by everyone’s beautiful, kind and loving contributions to his health and well being. We have been discussing a strategy regarding the remaining money in the fund, and are going to work out an amortisation based upon everyone’s overall contribution to the fund, and will refund according to percentage. This is Pete and Cheryl’s wish for the monies.
That is all I can say at the moment. I am in a great deal of personal pain, but that is to be expected because it is perfectly in proportion to the amount of love I have felt for Pete in every role he has played in my life. If you haven’t taken a moment to look at the videos of him playing polyrhythmic drums and explaining what he’s playing as he’s playing it, please do that now. Then, if you’re so moved, you can send him a message about it while he’s still here. I know he’d appreciate that.
It’s the 15th anniversary of our mother’s death from Alzheimer’s.
AS I OFTEN do on this day, I here post a link to my story of Sept. 11, 2001 in New York, one of nine million stories from that day:
My story is not heroic. I saved no one on that day. It is not tragic. I lost no one.
The story I published then is incomplete in many ways. When September 11th happened, I was newly in love with a married woman who was leaving her husband. To be with her, I was leaving my girlfriend of six years. See? Not heroic at all.
The relationship with my girlfriend had been unhappy for years, but I still felt guilty leaving her. As partial penance, I let her stay in my apartment (“our” apartment) while I bunked in a tiny dump above a dive bar. The floor was crooked and the air always smelled like pierogies.
On September 11th, my new girlfriend, the soon-to-be-unmarried lady, was standing on Fifth Avenue when she saw smoke from the impact of the second plane. She was a mile north of the World Trade Center but could still see the smoke. Everyone could see it. Everyone but me, freelancing via modem in the pierogi-smelling fuckpad. The door opened, and there was my new girlfriend, looking stunned. “You don’t know,” she said.
I called my old girlfriend to warn her not to go downtown. She asked why I was crying.
I was crying for her, because I’d left her alone in a suddenly frightening world. Crying for the people in the World Trade Center. We didn’t have any details yet, but it was clear that many people had died. Crying, had I known it, for the thousands more who would die in the wars that were born on that day.
There was no TV and no internet. It was days before I could publish the incomplete story I linked to at the beginning of this memoir. Even when there was internet access again, I could not tell the parts of the story I am telling now. I could not tell them for years.
There it is. Like something out of Hollywood. Horrifying historic events as backdrop to a romantic drama. I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world.
Everything changes, but, for the living, life goes on. My then-new-girlfriend, my fellow 9/11 PTS victim, is now the mother of my child, and my ex-wife. This morning I walked my daughter to school, then headed to the gym, where I warmed up on a treadmill. Above the treadmill were TVs, with the sound off. On the TV I watched, the names of the 9/11 dead were being read aloud in alphabetical order. They were still on B when I finished my workout. The other TV was showing ESPN, and the gym member on the treadmill next to me was watching that instead of the ceremony.
After finishing her late-night snack, she left the empty bowl beside her in the bed “for Emile’s spirit to nibble on.”
When I returned from Boston, my little white dog was much sicker. It’s the lungs. There’s a constant honking gasp, except when he’s sleeping. The doctors said this would happen, they just didn’t say when. Despite the constant meds and steady love, there comes a time when the animal can’t breathe—and nothing medical can be done, other than the merciful horrible.
So today is the day. I feared it on the afternoon I came home and I knew it for sure last night. Where there is life there is hope, until there is no hope. It’s time for Emile to go gently to foreversleep.
If my daughter wasn’t with me, I’d have taken him in for the procedure yesterday. As it is, to minimize my daughter’s trauma, I’ll have to squeeze it in today, while she is at school. Death on a schedule: between my workout at 9:00 and my first business appointment. Tears at eleven.
At this second, little Emile sits comfortably on his dirty red cushion, cleaning himself after a hearty breakfast of flavorless hypoallergenic food stuffed with pills. His breathing is normal enough to fill me with guilt, hesitation, and denial. Is there still hope?
Dreamed my parents were getting divorced. I’d be asking my momma why, and she would turn into my wife.
The conscious mind deals with what is in front of you, the unconscious processes what has yet to be behind you.