Hospice

I now doubt my ability to walk two miles or even one. My liver failed, I had no white blood cells, I had a fever and a bad case of thrush, preventing me from eating or drinking. My oncologist sent me to the hospital, where I remained six nights.

I went home on hospice care. Much more could be said, both good and bad, about the past month, but I am tired. I have little energy for replies to email, for instance, and even less energy for visitors.

I don’t know how long I’ve got–a few weeks? Days? I use a walker, with assistance. To get around the house.

The book should still be published, though it may take a while.

Thank you all for your thoughts, prayers, meals, and the many other ways you have loved us. God’s blessings on you all.

Two miles, even with jaundice and highest PSA ever

Like Prufrock, I measure out my life with spoons. This morning I wondered if I had enough spoons to walk Sir Gibbie two miles and have any spoons left for the rest of the weekend. I also wondered if I could still walk two miles, something I haven’t done in weeks, since before my liver enzymes blew up at the end of May. Could I, one who for the past two weeks has mainly imitated a patient etherized upon a table, walk two miles through my yellow fog of fatigue? Continue reading “Two miles, even with jaundice and highest PSA ever”

The Interim of Unknowing

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Let me know if I turn yellow.

I’ve written before about what I call the Interim of Unknowing. It’s the time gap between when I learn of a problem and when I figure out whether there’s something I can do about it, or whether I just have to accept it. During that gap or interim, I don’t know what my stance towards it should be. And that’s where, for me, anxiety lives.

Thursday morning I was thrust into a new Interim of Unknowing when I was told how quickly my liver enzymes had shot up to very high levels. Continue reading “The Interim of Unknowing”

Radioactive Me

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Nephew Tyler after our big day on Thursday, and after Italian food.

What a week. After two weeks of being sick while trying to arrange everything for this past week, this past week actually happened, or is almost finished happening. I’m writing this on my homeward flight Friday afternoon. Summary: I got the clinical trial drug yesterday afternoon. The trial only has a single infusion, so all my future NY visits are for follow up. In three months they will scan me and see how well it is working. Main objective achieved, through the help, prayers and love of many. Thank you! Continue reading “Radioactive Me”

April progress, good and bad

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Sketch of Tolkien’s Gollum character, by Guillermo García-Pimentel Ruiz (public domain)

Summary: Although everything is finally in place for my clinical trial trip to New York next week (M-F), I saw Wednesday’s scan results this morning. The bone scan wasn’t much news, but the CT scan they compared to my PET scan that was done only seven weeks ago. I now have have a 7mm nodule in my lung (I will call it Gollum) and “numerous new hypodense hepatic lesions” in both lobes of my liver, the largest lesion measuring 2.4 cm. Also a little new (or enlarging) lymph node development. Sobering, but on with the trial. I don’t have a more attractive option at this point. Here’s hoping 225Ac-J591 does a number on my cancer cells. Continue reading “April progress, good and bad”

Clinical expotitions, part 2

My second clinical expotition was more fruitful than the one last month. Short summary: I’m now signed up for a clinical trial in New York City at Weill Cornell Medicine. If all goes as planned, I will return to NY in a couple of weeks for scans, a bone biopsy and then the treatment. The trial consists of a single treatment with 225Ac-J591, followed by a raft of return visits to see how I’m doing. It’s the first trial anywhere of this drug, and the drug itself is made at Cornell. The trial has had good results thus far, so I am hopeful it will work well for me. Working well means I get another reprieve, as I have for the past 1.5 years on Keytruda. Continue reading “Clinical expotitions, part 2”