June 25 - July 1, 2000

Sunday, June 25
Don's progress is so impressive that Keith comments, "You're not sick enough to be using this bed."

Monday, June 26
After a flurry of activity in the morning, Don is discharged. After checking me out on the use of a wheelchair, Don is wheeled to the van and we go home. Soon after we arrive, a bed, commode, and walker arrive. I set them up in the dining area, turning it into a mini-hospital room. This will be Don's room from now on, though we still will occasionally spend the night together in the bedroom.

Early this evening, I get a call from Stanford Home Health Care. They say a nurse will be out to see Don tomorrow. I ask when she will be there and they say she will call in the morning.

Later that evening, Dr. Prados calls from UCSF. He concurs with Dr. Peterson about taking Don off the tamoxifen. It doesn't appear to be doing any good anymore. He says the MRI shows tumor growth in the left hemisphere now as well. I tell him that Don and I would like to discuss treatment options with him, but that Don was asleep right now. He tells me he will call on Wednesday.

"Don will want to talk to you about copper depletion," I tell him. "I'll ask you about nitrosoreates like BCNU."

"He also hasn't had any of the cisplatin drugs, which is another standard chemo," he says. He also mentions cis-retinoic acid, a Vitamin A derivative. I said that was probably something both Don and I would agree upon.

Then I asked him, "Does the appearance of tumor on the left side indicate that tumor cells are circulating in his cerebral spinal fluid?"

"I can see a pathway for the tumor to get to the other side without circulating in the spinal fluid," he said. That was, in a most peculiar way, a relief.

"Don doesn't yet know that there is tumor growth on the left," I said.

"Would you rather you tell him that, or me?" he asked.

"I'd rather it was you," I said. He said he would do it. I want to be here when that happens. I'm pretty sure it will be very difficult for Don.


Don's New Room: Home
Tuesday, June 27
Wednesday, June 28
Thursday, June 29
Don has officially "beaten the odds" today. It was a year ago today that an MRI first detected the tumor. Fifty percent of glioblastoma multiforme patients die in the first twelve months after diagnosis. Don is now in "the upper half."

I used to think this would be some kind of happy milestone, reasoning that, since the majority of deaths occur in the first twelve months, that meant the remaining deaths occur at intervals further and further out from initial diagnosis. I no longer believe that. I no longer think Don is going to make it. I feel very guilty about my lack of faith, but how much longer can his body take this kind of punishment? How much longer can our spirits?

Friday, June 30
Saturday, July 1
In celebration of the upcoming Independence Day, Don and I go to see Chicken Run. We had seen Stalag 17 on the AMC Channel while Don was in Stanford, and it was fun to see some of the parallels they played with. (Of course, the parallels to The Great Escape were even stronger, plus at least one character that seemed lifted from The Bridge over the River Kwai.)

Don walked without the walker from the house to the car. I rolled him in the wheelchair from the parking lot to the theatre. On the way, we passed several close-in handicapped parking spots. I vowed to myself to get an application form (prossibly off the Internet) for a handicapped parking permit.

In the theatre, there was a special spot for wheelchaired patrons. There was even a regular seat right next to it, so Don and I could watch and hold hands. We had a great time.

When we arrived back home, Don, with my encouragement, tried to walk from the car to the house. He got as far as the steps to the front porch, but then he tried to step up on his left leg and it gave way completely. He tried again with his right, but that meant he had to support his weight on his left, and again it gave way. I held him up for a few minutes while he caught his breath. Then I carried him the few feet to the chair that was waiting for him in the livingroom.

He found the loss of control frightening. I hope it hasn't damaged his spirits. I was hoping instead that this little trip to the outside world - his first in three weeks - would be inspiring.



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© 2000 Louis Flint Ceci / ceci@best.com