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”

Liver jumps around

In today’s blood tests, my liver enzymes rose again (not good), but not back up to where they were two weeks ago–much smaller increase (good-ish). So the bounce was more like a Silly Putty bounce than a Superball bounce (for those of you old enough to have played with these as a child).

Bilirubin is still climbing. The corners of my eyes are yellow. Fatigue recently has been overwhelming.

Will get another blood test next Wednesday. No proposed action on anything yet from the oncologists. I should be able to get the result from today’s PSA test tomorrow. That may be my first hint of whether the clinical trial drug is working.

How to move to New York without knowing it

IMG_6475Funny story. Tuesday morning I rushed to get out the door to my 9:45 AM radiation oncologist appointment. I don’t like to rush, but I had to gather up scan image discs and radiology reports, in case those hadn’t been forwarded as they should have been. And usually they haven’t been. Once again I’m having to orchestrate my overall, cross-specialty care and communication, something I’m neither trained in nor much good at anymore.

But that wasn’t the funny part. The funny part was after I parked, went in, and announced myself at the Special Window for Self Announcing. The nice lady looked at me, perplexed. Continue reading “How to move to New York without knowing it”

The Interim of Unknowing

LEGO_scared
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”

Liver mystery

For the past week, I’ve felt extra fatigued. This morning, at my appointment in NYC, my liver panel showed very high liver enzymes, just a week after they were nearly normal. So they ordered me an ultrasound of the liver. But this afternoon’s ultrasound didn’t turn up any explanation. It seems their best guess at this point is a delayed gift from Keytruda. So I’m at LaGuardia, waiting to fly home. It has been a difficult trip because of the fatigue, GI issues, and the stress of yet another complication. At least I don’t have to come back for four weeks.

They want me to get my levels re-tested Monday in Knoxville and to go see a liver specialist. I don’t even like liver.

Hypothetical bus of death

Irridescent tour bus in Stratford-upon-Avon.
If I must die by bus impact, I choose this one.

Well-intentioned people thoughtfully remind me I don’t know when my life will end or even if I will die of cancer. The Hypothetical Bus of Death, which runs over so many (hypothetically), could end my life tomorrow morning, instantly removing all my uncertainties and anxieties, replacing them with certitude and serenity. Continue reading “Hypothetical bus of death”