pressure, blood and others

Rich's blood pressure, not unexpectedly, has moved from his normal low to too-high. This is a "side effect" of Sutent, the experimental-for-chordoma drug.

He is still waiting for the "front effect." It doesn't seem to be working. What is working is pressure on his feet, causing painful blisters; sour stomach, causing fear of anything but bland; hope, causing disappointment.

He will not take more Sutent until he gets in touch with the physician's office, probably on Tuesday.

So the pressure is still on: A limited time to stop the tumor before it hits the spinal cord. Surgery is the next step, but it will cause, at minimum, total loss of usage of his right arm.

Maybe I should explore more alternatives, Rich says. Most do far less damage than pills and knives, and some even comfort. But what if nothing works?

Is there a reason for all of this? Rich asks as we fall into bed.

No.

And we sleep, long and deep.

Candace

alive!

I don't think it's me. We may be passionate about politics or sports or NASCAR, but when we ask ourselves what really matters in our wooly-sized worlds...

It's coming up on three years since Rich's surgery. I remember the day after, awake for most of the previous 48 hours, happily stumbling into my favorite NYC pastry shop. Most tables are filled, people absorbed in their cafe au laits, newspapers, laptops.

In front of me is a gaunt young man in black.

"Two coffees, large," he says.

"A long night?" I cheerfully ask.

"Bush won."

Oh, right. Yesterday was the presidential election, and I suppose the absentee ballots Rich and I filled out in October didn't make the difference.

But, I want to shout: Who cares if my candidate lost? My guy won! He is alive! Why isn't everyone celebrating?

Perhaps because my world is so small. Or maybe just the right size.

Candace

watch wooly walk

"Do you think he's dead?" Rich asks.

"No, just resting," I say.

He --- or she, I'm sorry I don't know the difference in this species --- is a wooly catepillar, a furry black-and-brown black-eyed pinky-sized autumn visitor. This Sunday morning he is camped out on our deck, crawling from one board to another, hesitating when he comes to a small separation between the boards before charging across.

Does he have a goal? We expect it's the grass, where he will be safer from predators and find some food. So, we root for him to conquer the chasms between the boards, urge him on as he wriggles under a stray blade of grass that's twice his size, and bravely ignores our skyscraper shadows.

Sometimes, he rests. Moving forward is an act of courage, and so rest, a temporary form of death, is a good strategy. We humans can clearly see where Wooly should be going. Why are you spending so much energy going south! You will only bang your head! That's it...turn around...good!

Rest, crossing chasms, not seeing if we're going in the right direction: That's our life this autumn.

We come back, about six hours later, and find Wooly cozily tucked away, at the edge of the grass and deck. A safe spot. Did he know he would end up here, or is it pure chance?

Either way, it will work.

A good week to all,
Candace

chordoma dance

I never explained the title of this blog. For a good reason. It is a "tofu" title; that is, it easily absorbs the thoughts and emotions of the moment.

At this moment, then. Dance as a series of movements...that is, a form of transport. Not as a way of physically getting from one place to another; to dance is not the same as to drive a car or fly in a plane. If I want to go from New York to London, a tango won't do.

We want Rich's chordoma to go far away. We will buy the ticket -- first class, why not -- a bottle of champagne, and almost anything the chordoma wants for future happiness. Except, of course, Rich's body.

But there is another meaning to "transport" that's not dependent upon chordoma's acceptance of our most generous offer. It is to take us to another place, another time, another way of living.

We're trying.

Candace

going backwards!

Going backwards...a good thing! Rich's neurosurgeon phoned yesterday with just-arrived MRI scan, and confirmed what Rich is feeling: The tumor is showing no new growth, and its "density" (I admit I'm not quite sure what this fully means) is reduced. Although eating with chopsticks remains a challenge, Rich's range of motion is not getting worse, and at times seems a bit improved. So -- the 'Sutent' will continue, and we return to NYC in 10 days for the next follow-up.

Candace

following that damn blaze

A year or two ago, I read an article profiling hikers who had just completed the Appalachian Trail, a trek of five or six months of through hiking from Georgia to Maine. Some had specific plans and responsibilities to which they were returning; others were not sure of their next step. Just about all, though, agreed with the words of one hiker: "Life was so simple on the trail. All I had to do was put one foot in front of the other, and follow that damn blaze."

I think this sums up all of the great teachings. This is a good life.

Best wishes to all,
Candace

snafu.again

To turn to "modern medicine," one must assume that its tools are worth the pain. Poison and cutting, these are the pillars of Western healing, and sadly Rich has needed both. And one more, of course: The Perpetual Snafu.

The latest is this. Rich has an MRI at the local hospital, needed because his right arm continues to lose function and the surgeon has to know if it's time to cut again. Snafu begins with the primary care physician requesting an MRI for the wrong body part. It continues with the hospital sending the info to the wrong physician. Rich catches both of these. He requests that the CD be mailed immediately, there's no point in waiting for the local radiologist's report. This error he did not catch until today. The CD waited for the report we didn't need. The surgeon doesn't have it. It is somewhere, but nowhere of use. Maybe it will arrive by the end of the week.

Candace

bare naked bulb

The light bulb in our "reading room" died. Our new house has high ceilings, so Rich goes to the shed, retrieves the ladder, climbs. For his six-feet-plus height, this is an easy reach. Except he can't lift his right arm. So he unscrews the square glass cover with his left arm, hands it off to me, and removes two bulbs.

Carrying a fresh pair of sixty-watters into the room, he climbs again and easily screws in the bulbs. Having washed it clean, I hand the cover up to him.

No way. You can't do this with one arm.

I try. I'm fearful of ladders, but I try. For my five-feet-five height, this isn't working. I can't go high enough.

No matter, I say. We can live with a bare bulb.

You know what, Rich says. I didn't have to remove the cover at all. I could have taken off the bulbs without doing that.

Ah, well, too late. Do you want tea?

I fill the kettle, pour milk into the mugs, and we read the newspaper and talk about a racehorse named Maimonides.

Candace