Sunday, December 07, 2008

Last Shot

The meeting went well. Our dear friend Sharon, who's had entirely too much experience navigating medical situations, came with me and Gary to lend another set of ears. Sharon and I were both wearing masks: she's getting over a cold, and I came down with a doozy last night. (I realized I was getting sick in the middle of a visit to Dad, and promptly left; I hope he doesn't get it!)

Here's the trial for which Dad's being considered. What's appealing about this is that it's precisely for people who can't tolerate surgery, and involves a much less invasive catheter procedure. Dad's a good candidate in that sense, because there's nothing else they can do for him. He asked the doctor what his life expectancy would be without the procedure -- a question I'd been planning to ask too -- and the doctor said gently, "A year or less. Maybe only weeks."

We were all very quiet for a second, and then Dad said, "Well, then, I have to do it. I'm not ready to accept only a year."

The trial description describes the primary outcome of the study as "freedom from death." You can't get much more succinct than that, although any ultimate freedom from death isn't the province of doctors.

Of course, Dad could still wind up in the control group; that's handled via computer, so the doctors themselves don't choose who goes where. If he's in the control group, they'll give him the very best medical management they can. I asked if, in that case, we can get a palliative-care consult, and the doctor said that he didn't know, but that as long as palliative care honored the medication regime, he thought it would be okay.

We still have tons and tons of questions the doctor couldn't answer, especially about financial matters. He was going to e-mail the Palo Alto people right after the meeting and try to set up a phone conference. At this point, though, I can't imagine that Dad won't want to go for it, since it's effectively his last chance.

On the ride home, Sharon and I agreed that, reading between the lines, the doctor seems to be concerned about whether Dad even has time to get to Palo Alto. "There was some urgency there," Sharon said.

Thank God Dad's so alert and so decided in his own wishes. I couldn't do this for him.

Meanwhile, Mom's still at home in Philly, but not doing well. She's having a lot of nausea and a lot of trouble breathing (my BIL took her to the doctor last week, and even on oxygen, her sat was only 91%). She's told my sister that she'd like a caretaker for a few hours a day, to do things like help her bathe, so Liz is going to look into that.

Mom can barely even talk on the phone. I wish I could be there, but I can't.

Right now, I need to work on feeling better myself, and on getting my work done. And on that note, I'm going to go downstairs now and make myself a pot of tea.


  1. Rough times. I'm heartbroken that your father is having these troubles just when he moved to be with you and a happy time has become so much more intense. I'm praying for you all.

  2. Oh, Susan, feel better!!! Prayers headed your way. I think your Dad is taking his situation as he can. Again, kudos to you for honoring his wishes. I think you have sensed his doctor's attitude correctly. Let us also trust in the loving God who holds your Dad so tenderly in his hands. Your mother sounds poorly. It may be time for your sister to get very forthright and tell the doctor that continued nausea and low O2 sats is not acceptable and either the doc coughs up a solution or gets another doc involved. Perhaps even palliative care. Sometimes you totally have to shove these docs around. Or, your sister does. YOU have enough on your plate. I am sending prayers, love and hugs and kisses--please spray Lysol on some for your Dad--and know that God holds you, too, in his hands...

  3. Thanks, Terri! I know that God's cradling us, but this is one of the times when that's much easier to sense from how my wonderful friends are doing the same thing!

  4. Prayers for your Mom, Susan. And you too! Please take care and feel better soon. As stressful as this all is, it sounds like your Dad is getting good care, and no doubt much of that is due to your being attentive and persistent.

    The friend I lent The Fate of Mice to has reported back that he liked the story about Rodney. He also read Gestella and I'd warned him it might get him all emotional. He said he could see it coming. :)

    Peace! & Hope!


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