The Triumph of Hope Over Experience

Entry 1     9:38 a.m.

"Have you not done tormenting me with your accursed time! It’s abominable. When! When! One day, is that not enough for you, one day like any other day, one day he went dumb, one day I went blind, one day we’ll go deaf, one day we were born, one day we shall die, the same day, the same second, is that not enough for you? [Calmer.] They give birth astride of a grave, the light gleams an instant, then it’s night once more."

    -Samuel Beckett, "Waiting for Godot"

Jenny is attached to the chemo pump. She sobbed uncontrollably much of the morning, and intermittently this afternoon and evening.  I was in meetings this morning, so apart from making her breakfast during a break, I was upstairs working in the office. Tonight she said the thing she says on day 2 of the pump, "I don't want to do this anymore." I gave her a hug and some words of encouragement--that tomorrow will be better and the day after she will be fine.  She knows. She just needs to hear this, because this chemo regimen, like the others, is hell. 

Pozzo, waiting for Godot, 1953.

Leiney came home tonight and

will come home every weekend to work at Amnesty until they open the Bellingham office. She was promoted, as I said a bit ago, to team lead after just a few months, and she is perfect for the role. She is a salve for Jenny's sadness. 

Today, for the first time, Jenny said straight up, she is going to die. 

Our financial adviser came over to discuss our finances, and that went well. But, we had to talk about to whom insurance monies and 401(k)s are designated to in the event of death.  

We know the worm will turn, but we don't know when. It's excruciatingly painful. We are constantly on tenterhooks, dreading the news. 

Now, this is not surprising, but her doctor is getting more sloppy as time goes on. He didn't order the CA 19-9 yesterday, he didn't post any post-visit notes.  Looking at the orders in the system going forward, he has ordered CEA at each visit through November, but did not order CA 19-9.

I have been doing, quelle surprise, research on third-line chemotherapy. Truth be told, there is little out there, given most people don't make it to a third kind of treatment nor are there any drugs FDA approved for third-line. These two things I found today underscore the knife's edge we are walking:

A.  After progression during first-line treatment, few patients are eligible for second-line treatment due to the loss of performance status.

B. If disease progression occurs after administration of first-line therapy, survival remains short for patients with pancreatic cancer, and the outcome with second-line chemotherapy remains unsatisfactory, with a low response rate. 

Pancreatic cancer is tough. Most people don't make second line.  Dr. P. told Jenny yesterday that the average person diagnosed this year has died in 4.5 months.  Doctors with all of their research, all of the chemotherapy, immunotherapy, gamma knives, and radiation in their armamentarium are failing in the fight against this cancer. 

I would give anything for a journal article that offered a ray of hope. My girls deserve their mother being around.