Thursday, December 11, 2008

Roller-Coaster Day

Today's events, in reverse order:


Around 8:00, while Gary and I are at the piano recital (which is lovely!), I get voicemail from Dad saying that he'll be in the air within half an hour. This is of course great news, but makes it difficult for me to concentrate on the rest of the recital.

We're expecting a string of storms here starting tomorrow, but Gary and I will drive over to Palo Alto when we can. Sharon has offered to drive me if I'm too much of a basket case to drive safely (see event #3) which is awfully sweet of her.


I get a call around 4:30 from the doc at Stanford, who has a bed for Dad. The scary news is that someone at the Reno VA -- maybe the transport coordinator? -- told him that Dad was no longer interested in being part of the trial. Thank God he checked with me before releasing the bed to someone else!

I hit the roof when I hear about this. I fire off e-mails to two of Dad's Reno doctors, and then call Dad -- I'm not visiting him because I'm feeling coldish again -- and tell him to complain to the charge nurse. He calls back to say that the charge nurse is working furiously to arrange transport, to get his attending to fill out papers, and to figure out what the frack happened to give anyone the idea that he didn't want to go.

He could have lost his shot at the trial. Thank God the guy at Stanford called me!


Fran fails the vision test for her Nevada driver's license, and proceeds to think up ways she can drive on her Illinois license. I try to discourage this. At one point, when I'm about to drop her off to visit Dad, I snap, "Look, Fran, the bottom line is that if you can't see well, you shouldn't drive." Just at that moment, she yells at me to look out: a car's coming, and I didn't see it.



My sister calls me, in the middle of a walk that has become a sob-fest (see event #1) to say that Mom is doing better, is sitting up and coherent and interested in the world. They had a good visit. Yay!

The medical news isn't good at all, though. One of Mom's doctors told Liz that Mom has congestive heart failure and aortic stenosis -- these being my dad's two chief complaints also -- in addition to pulmonary hypertension and "bad" (his word) emphysema. They're going to do a stress test on Mom tomorrow; presumably this will be a chemical one, since I doubt very much that they'd be able to get her up on a treadmill.

Meanwhile, a pulmonologist told Liz that Mom has a lot of fluid in her left lung, and that Lasix hasn't helped drain it, so tomorrow they're going to drain it with a needle, both to relieve pressure and to test the fluid to see what's going on. For instance, has Mom's lung cancer come back?

With all this, there's still some talk of Mom coming home this weekend.

My sister says, "The first doctor kept saying, 'We have to decide how aggressive to be.' I don't know what that means."

"Do you want to know what it means?" I ask her. She says yes, so I say, "I'd interpret it as meaning, 'We may need to start thinking about hospice.'"

She says, "But they're also talking about maybe doing angioplasty."

I presume that angioplasty would be the option if the doctors, in consultation with Mom, decide to be aggressive. I suspect Mom won't want that, but we'll see. I tell my sister, "Find her advance directive. Keep it on you. Make sure the hospital has it. Review her wishes with her: ask again whether she'd want to be resuscitated or intubated, because she may have changed her mind since she filled out the advance directive. And make sure the medical staff knows what she wants."

I also ask my sister to ask a nurse if Mom's hospital has pet therapy. Evidently it doesn't, which is a real shame, because a visit from a nice shaggy dog is a form of spiritual care she'd not only accept, but love.


I sleep very late, wake up feeling awful, and then get a call from my sister that Mom called her at the crack of dawn, saying that she'd dropped her cell phone and wanted to see if it still worked. But then another story emerged: Mom had a horrible nightmare, the worst she's ever had. She dreamed that she was asleep and woke up in her hospital room and was absolutely terrified, and rang for a nurse, and no one came, and she felt abandoned and grief-stricken and paralyzed with fear, and no one came and no one came and then a nurse finally came, and it wasn't a dream, the nurse was really there, and so was another nurse and a doctor, because Mom's oxygen had slipped off and they had to get her O2 levels back up.

My mother evidently told the medical staff, "That was more awful than I imagine being on the brink of death would be."

I tell my sister, "But it sounds like she was on the brink of death."

"I know," says my sister. "Maybe she was in denial."

This story shakes me deeply, because it contradicts everything I thought I knew about hypoxia, which is supposed to be -- and has been, according to all the patients I've talked to at my own hospital who've experienced it -- the state in which one feels blissfully at peace, sees the white light, meets previously departed loved ones waiting to usher one onward, and so forth. I've always imagined my mother, at the moment of her death, seeing her parents again, and finally being free from pain after years of suffering.

Every time I think of her feeling abandoned and terrified, instead of at peace, I start sobbing. The tears feel like glass shredding my heart.

Later, I talk to Mom and she tells me somewhat crossly, as if it's my fault for being a chaplain, that "two pastors" came to see her, and that she sent both of them away. I tell her that I hope she was polite, and she says, "Polite enough, but I made it clear I wasn't interested."

It occurs to me that the medical folks may have called in a spiritual-care consult because of Mom's waking nightmare. I wish she'd talked to them. But I can't make her, so instead I decide to go for a walk. I walk and sob, walk and sob, thinking about my mother being lonely.

I wonder if the day will get better.


  1. Tell me what hospital your mother is in again. I think I remember you saying she and your sister were in the Philadelphia vicinity. If so, get in touch with me and I'll see if I can find a way to smuggle in the Rolling Peke for a visit. Even if (especially if) she's home, happy to do it anyway.

    notdeaddinosaur - at - msn - dot - com

  2. Susan, I'm so sorry all this is going on right now. You love both your parents and if your Dad weren't with you and needing constant care you'd be with your Mom in a heartbeat. It's heartening that your sister is keeping in such close contact with you about things. I'll keep praying for you, both your parents, and your sister too. I think I'll include the cats who no doubt wonder why you and Gary are traveling so much. Thank you so much for keeping us all up to date on this. Prayers for safe travel too.


  3. YIKES!!!!!!!! And, yes, I've read the subsequent post too. It does make you wonder if the entire medical establishment is some sort of Bermuda Triangle. As to your mother's dream, in some ways this is kind of a lifesaving dream in that she may have called out or something, or triggered an alarm, that got a nurse in to notice her O2 was off. There is an anxiety that is, I think, physiological in origin, that can kick in when something bad is happening--O2 is off, or bleeding--I think it is not always the case, and if one has hypoxia while on some pain meds, the anxiety is contained. Also, I think the tunnel and lights and etc. probably follow the anxiety. If that makes any sense. In any case, WHAT an awful day and I hope they fix the plane and transport your Dad as soon as ever on Friday. And I hope they can do the fluid thing on your Mom before they consider stress tests and/or angioplasty, because it seems that if cancer had come back that might make a difference in how to treat the other stuff. Oh, poor you, and your poor family, lots of prayers for you all. Gotta go, just got paged back in...

  4. I have been through the cancer wars twice. Earlier this year, I lost my mom to it. Enjoy the good days. Learn to roll with the bad days. And know you have many, many friends holding you and your family up in prayer. It helps. I know.

  5. I'd interpret the fear-dream as the soul still fighting on. When it's time, I'm sure there will be nice bright white light et al.

    But it ain't time for death, and fear's a part of life.

    Poor dear. You've had a tough day! Have a cookie.


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