I’ve been silent because I’ve been so very sick: swallowing has gotten much harder, and aspiration of food or liquid much more common, to the point that on July 1 I got a new PEG tube put in. Given how much removing the previous tube felt like a triumph, the new installation, although it’s keeping me alive, hurts. Literally and figuratively. Other physical problems I might write more about later are bedeviling me too—to the point that I wonder how much time I have left.
Being physically sick is one crisis; the second is that recent scans show that Seagen’s PDL1V is not holding back the tumors any more. I have to either switch trials, which I’m not sure I have the energy to do, or accept the end. Bess and I are working on a possible trial switch. But I’m swamped by headaches and fatigue. I don’t wake up properly. Foggy-headedness never abates. It may be that I’ve written my last essay (Bess saw this over my shoulder and she says she thinks I’ve not, but she’s an optimist about my longevity and writing abilities). I finished “Uncomfortable truth: How close is ‘positivity culture’ to delusion and denial?” a month ago. I meant to turn the last year’s writing into a memoir, like I’ve meant to do many other things, but cancer treatment is a more-than-full-time job, and now physical problems are knocking off a bunch of IQ points. I don’t know how many watts the brain typically consumes, but I feel like I need more, and the energetic processes that normally sustain and propel me are dysregulated.
Another recovery for a period of time is possible. If I don’t get there, thanks for reading. I still don’t know how to say goodbye, except by example.
An update. If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
The Story's Story 
Jake,
I met you once-a pleasure meeting you at your Mom’s and Dad’s house in HB years ago. Immediately you struck me as an intelligent force-one who uses words with great fluency and impact. Knowing you were a writer-you have educated those of us who have been opened to your trials, pain, humor and determination; emotionally as well as an eye opening look into the fight that is cancer. We have come to know Bess as an equally amazing force, advocate, doctor and partner. While I do not have the ability nor the words to articulate the life changing impact you have had on me, please know that I am humbled by your inner strength while your body fights. To you and Bess, I wish for peaceful moments that carry you through when will and strength ebbs. I do know that your courage in writing and educating us on bureaucracies that fail patients will be a catalyst for change. You and Bess will be providing not only hope, but change for others.
With love and admiration,
Patti Scott
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Jake,
I’m a physician. My practice has been indelibly changed by your descriptions of your experiences.
Thank you for updating us on this change of events. Please continue to update us as you can.
Luke B
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Luke—You’re welcome, and I will. Not sure how often that’ll be, but I will try.
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Jake, Thanks for the update. We’re all pulling for you. I hope you can get back to writing and sharing your insights and musings again soon. It’s been a pleasure reading your stuff, and I know your account will help many others.
Eagerly awaiting your next post,
Andrew
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Andrew—thank you—I took some Flexeril last night to try and alleviate headache, but it generated all-day hangover and exhaustion. I can’t tell whether I’ve written the last one yet, but things are not going well and I’ll learn more tomorrow.
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