Thursday, May 31, 2007

Remedial Reading

Jim's been into spontaneous napping lately, which has more to do with the effects of his illness and the deliciously warm late spring afternoons than it does with my scintillating personality. So when I go to visit him, I bring a book for me to read, usually something taken from our vast "Don't get rid of those, I haven't read them yet" collection and usually a hard-boiled detective novel. We've accumulated them over the years from God-knows-where: Friends, relatives, paperback exchanges. So now I'm plowing through them.

This week I started on Robert B. Parker's "Sunny Randall" series. I always get a little leery when a guy writes from the first person as a female protagonist. I always think of Larry David's old routine about "if I were a woman, I would stay home all day looking at my breasts."

However, Parker had a very specific woman in mind when he created the character of Sunny: His good friend, actress Helen Hunt, who's going to play her in the movie. Like Parker's most famous character, Spenser, Sunny has a sharp wit and a funny dog. But she's a divorcee determined to rely on her own internal compass. She has two best friends: Julie, a shrink, and Spike, a tough gay guy karate expert. Yes, folks...the dean of American crime fiction is writing Chick Lit!

I finished "Family Honor" last night and started in on the next book in the series, except I don't know if I want to bring a book to a hospice whose title is "Perish Twice."

Thursday, May 24, 2007

Nature: Not Your Friend

Amba weighs in with another essay about turning 50.

And now, if you'll excuse me, I'm going to go dance sky-clad at my croning ceremony.

Wednesday, May 23, 2007


"Davis Park was like Brigadoon, a place where 1975 magically reappeared once a year."
Marissa Piesman
Close Quarters (Nina Fischman Mystery)

Thursday, May 17, 2007

Can't Trust This

James Lileks takes the family to Disneyworld:
I was sitting by a lagoon, listening to the music drifting from the speakers on Main Street: cheerful turn-of-the-century Fourth of July Ice Cream Social music. Those of us who grew up with the Twilight-Zone mentality learned to distrust this. Surely this perfect façade hides a horrible truth. Next stop is Willoughby, sir. But what if the mistrust is the false position? What if this is what it seems?

While Nora Maynard enjoys a writer's residency in a small town:

But after dinner tonight, feeling restless and overfed, that's just what I ended up doing. I started walking and soon found myself at the Carnegie Public Library, where I browsed a bit and picked up some books I've been meaning to read, both by Laurie Colwin.

On the way back to the colony, this was the scene:

library books tucked under my arm
tree-lined street
woodpecker tapping in the background
American flags hanging from porches
man ruminating in a rocking chair
lazy dog on sidewalk

Still waiting for the seamy David Lynch-style underbelly to appear. I have over a week....

Wednesday, May 16, 2007

On The Road Again

I got a call this morning from the head nun at St. Rose's Home telling me that a bed would be available for Jim this Friday, and that I should call the social worker at Cabrini and have her set up the transfer by the end of the day, or they would go to the next person on the waiting list.

Fast and furious, I made the necessary phone calls and the transfer was confirmed. I was relieved, but also a little disappointed. Cabrini is such a beautiful place and it's too bad Jim couldn't have spent more time there or been transferred there sooner. And, I reflected, I would miss the sound of the Buddhist prayers from the elderly Chinese man's room greeting me as I stepped off the elevator.

But when I passed the old guy's room on the way to visit Jim tonight, it was quiet; the bed was stripped and empty, and his things were gone. So maybe this is just the right time.

Friday, May 11, 2007

Okay, This Place Actually SAYS "Hospice" On It

When the elevator doors open on the 10th floor of Cabrini Hospital, it says "Cabrini Hospice" in letters a foot high. They transferred Jim there this afternoon, and when I left this evening he had already enjoyed dinner, snacks and TV. There's a family lounge with free coffee. All the walls are painted this lilac color, and there's a little waterfall going all the time out near the nurses' station.

In one room, a very elderly Chinese man lies listening to a tape of Buddhist chants that plays continually all day. The sound filters down the hall and has an otherworldly quality to it. Every time I pass his room on the way to the lounge, I expect to see him levitating.

I've been casting surreptitious glances at the other patients as I walk down the hall. The hospice is a short-term facility, like Calvary. Some patients, like my husband, are awaiting imminent transfer to a long-term care facility. Others, like the elderly Buddhist, are awaiting imminent transfer to another world.

Our insurance is picking up the tab on this one, so the appointment with the Medicaid lady is no longer critical. This is a relief, since I still couldn't find my birth certificate despite turning two households and our safe deposit box upside down. But I'm pretty sure I was born. In fact, I was born at Cabrini Hospital.

Some days, you don't know whether you're coming or going.

Tuesday, May 08, 2007

Welfare Queen

It feels as if 4:30 came very suddenly today, but this is only because I spent the morning at the Nursing Home. I had a conference with the Medicaid rep, a young Chinese woman who was rather surprised at the tiny size of the apartment I live in, and more surprised that I had brought pictures of the apartment to the conference.

If my health insurance discontinues Jim's rehab stay before he can be switched to a hospice facility, the rehab will start charging me $400 a day. In order to avoid these Hiltonian rates* for half a room and a bedpan, we have to make sure something or someone is picking up the gap in the coverage. And if there's one thing I've learned from this, it's cover your @ss.

I also have it covered with something called “Spousal Refusal.” This is where one spouse signs a form saying she no longer financially supports the other spouse and then the other spouse is supposed to counter-sue and then you just keep suing each other back and forth until one of you dies. Kinda like the Beatles.

In order to apply for this Spousal Refusal, I have to bring a copy of every official piece of paper I ever had in my life, including either my birth certificate or my passport to prove that I was born in the US. I don’t know if I have a copy of my birth certificate around the house somewhere, and I don’t know if it’s in the safe deposit box. I called my father, because I know my parents have a copy around the house. He called me back a short while later and said that he’s surrounded by boxes of papers and maybe I should check out the safe deposit box first.

He's going to keep looking, though, and will fax it to me if he finds it. I told him to give me a warning. The fax machine is down the hall and I want to be there to intercept.

Any minute now, I expect somebody to drop something off at my desk and say, "This came in for you on the fax...Wow! You look good for your age."

Or at least I hope I do.

*Paris' accommodations for the next 45 days.

Monday, May 07, 2007

Oh Joy, It's Pneumonia

They've got him on an antibiotic and meanwhile, I'm still looking for another place for him.

More on this as it develops.

Oh yeah...and if you're planning on dying, make sure you're very wealthy or it's very fast.

Update, Tuesday 12:15 PM:

He was looking good when I stopped by this morning. He was sitting in a chair, finishing a full breakfast, and the recreational director was going to take him up to the roof garden. Good idea. It's gorgeous outside today.

Sunday, May 06, 2007

Rehab Wants Him Out

The social worker from rehab called me on Friday afternoon saying that based on the doctor's opinion that there is no further treatment Jim can have on his brain tumors, our insurance company is going to stop paying for his stay in rehab.

They're going to have someone from Cabrini hospice come over to evaluate him, possibly tomorrow.

I also paid a visit to St. Rose's Home yesterday with my sister-in-law. It's a beautiful, quiet place overlooking the East River, in a part of the Lower East Side that's home to various middle- and lower-class housing projects that are morphing into million-dollar co-ops. The problem is, it's a small facility of only 35 beds and there's a waiting list in the men's ward. And it's not like I can grease a nun's palm and say, "Uh, Sister, there's a little something extra in this for you." So it may have to be Cabrini, which I have not seen. Or it may be Cabrini and then St. Rose's if he still is around to need a place.

Needless to say, Jim is the opposite of thrilled at this development. But the rehab has been the wrong place for him all along, except maybe for the first week. Then the disease started getting worse, his legs started getting weaker and he became too tired to do the exercises, and then he started catching every flu bug that runs rampant through your average health care institution. He needs supportive care more than he needs rehab, and a rehab is set up to get you on your feet and back home, and they don't have the staff with the skills needed for someone in Jim's condition.

"So now I'm never going to walk, is that it?"

"I don't know. Never hasn't happened."

"I'm never going to go home again, right?"

"I don't know."

"I'm going home. I'm going to lie down and close my eyes and die peacefully, tonight."

Hooray for magical thinking.

"Jim, if you went home you wouldn't just lie down and close your eyes and die. You know what would happen? First of all, you'd be in agony without all these medications."

"I don't have any pain."

"That's because you're on all those medications. And then...You know last night when you told me and Gilda that you heard wheezing in your chest and we went down the hall and got the nurse and you got oxygen and they checked your blood oxygen and gave you an ex-ray? If you were at home and said you had wheezing, I would have to make a snap decision whether to call 911 and have the paramedics take you to St. Vincents or just watch you all night to see if you developed pneumonia and died. I certainly wouldn't be able to get you oxygen and a blood monitor."

Not to mention the 50,000 other symptoms I would have to continually evaluate at home or from phone calls at work until I felt like a triage nurse in a big city emergency room, except it would be the same patient over and over every ten minutes and the stakes in being wrong would be more than just my job.

I feel responsible for him getting kicked out of rehab, since it was my idea to have the oncologist reevaluate him. I'm the one who said "What good is rehab when the cause of the disability isn't going to be treated and the symptoms will just get worse?" So now he won't walk again because of my big mouth.

But rehab as practiced in a rehab unit is for people who've had surgeries or accidents, like Governor Corzine, who practically became a human accordion. It's for otherwise healthy people who are expected to recover. It's not the type of physical therapy given to preserve whatever function a terminally ill person has left. So hospice probably is the best idea.

And I really wish the insurance company would stop screwing around with my sense of acceptance, or swear I'll turn around and go right back to "denial" and go shopping. So there.

Friday, May 04, 2007

Friday Cat Teeth Blogging

I dropped Chico off at the vet for his dental work this morning. I'm waiting to hear if everything went all right, especially since Chico's been sneezing on and off for the past three days, but is otherwise totally fine.

On the way there, my cab driver got pulled over and ticketed for running a red light. I looked for another cab while the cop was writing the ticket, and by the time the cop had finished writing the ticket, I still hadn't gotten another cab so I got back in. I don't know if this will be a bad omen for Chico. I've given up on thinking what will be a good or bad omen for Jim.

The oncologist still thinks he's too sick to be poisoned. Not Chico; Jim. He said that anything harsh enough to temporarily shrink the tumors would be harsh enough to kill him. Meanwhile, his own immune system and the great supportive care he's been getting are causing his own body to slow the effects of the cancer about as well as any available chemo options would right now.

"See, when you die from cancer, it's not the cancer that kills you. The cancer weakens your body and you get pneumonia, and it's the pneumonia that kills you." Good to know.

My sister-in-law asked about a natural remedy she'd heard of, graviola. The oncologist said there was anecdotal evidence about it: "I have patients who've claimed that it's done great things for their immune system," but that he wasn't the one to talk to about complementary therapies. So he referred us to Sloan-Kettering's Integrative Medicine services. We're supposed to have a conference call with a practitioner there tomorrow morning.

I'd put this under the category of "can't hurt; might help." I'd first heard about Co-Q10 seven years ago when a vet had recommended it for Pongo's heart disease. We'd added it to the regimen of a dozen heart pills, vitamins and supplements that we gave him every day. That, and a really expensive pet store cat food, and, oh yeah, being treated like an Egyptian deity, probably extended his prognosis considerably and helped him live to a ripe old age.

So now I'm waiting to hear from the vet, and tomorrow I'll speak to the Integrative Medicine practitioner, and I don't think I left Chico in the cab...I have a distinct memory of a vet tech taking him to the back reassuring me that he'd be fine.

Update, 11:45 AM:

The cat is all riiiiight.
The cat is all riiiiight.
Gotta pick him up on the way home from work.

"Oooh...the colors!"

Tuesday, May 01, 2007

Covering All The Bases

So I found out last night that my husband has an appointment with Sloan-Kettering tomorrow afternoon. I have to be at the nursing home to accompany him in the ambulette, which the insurance will not cover. And naturally, I want to be with him to speak to the doctor, who is kinda surprised that my husband is still in the land of the living. Maybe they'll figure if he's this strong, it'll be worth another shot at the cancer.

I'm also checking out St. Rose's Home, a nursing facility run by nuns on the Lower East Side for advanced cancer patients. The administrators at Calvary had submitted an application for Jim a couple of weeks ago and I wanted to find out if there was anything else they needed. I had also heard they have a waiting list and I wanted to make sure Jim was on it.

It turned out that yes, they had the application, and they need a pathology report. And the nursing sister who answered my questions said that they were waiting for more beds to open up in the Men's Ward, and that Jim was #6 on the waiting list.

"Well," I said glibly, "he has six more weeks before they have to discharge him from the rehab home, so if a bed a week opens up we'll be in business." The woman sounded flustered and I realized in horror what a bed "opening up" means in a place like that.

So the next step, besides hearing what the doctor has to say, is to dig through our medical files for the appropriate reports and fax them to St. Rose's. I also want to visit St. Rose's and see if it's as lovely as I've heard. I hope the nun doesn't crack my knuckles with a ruler over my joke.

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