Sunday, May 28
Don woke late and wanted Tylenol for a headache. I went to the
car and got what we'd bought yesterday and Smith's before leaving
Park City. He seemed confused about what medications he had taken
and what he hadn't. Around 10:00 AM, I tried to get him dressed.
Checkout time was 11:00 AM, and I wanted to be on the road by then.
And we still hadn't eaten anything.
I got most of the stuff packed into the car, then went to the
bathroom to urinate. I head a thump back out in the bed room.
When I got out of the bathroom, Don was lying on the bed. I
took the suitcases to the car wh. When I got back, Don was in
the bathroom. He was trying to wash out his sweatpants and
underwear. He had defecated in them. It was on the floor and
smeared on his leg as well.
I told him to draw a bath and I would lay out new, fresh clothes
for him, which I did. He got into the bath and I washed his back
and helped guide him as he washed other parts. Then we rinsed him
under the shower. As we were doing this, he said, "As Kendra said,
this is no way to live."
(That wasn't actually what she had said. Before the good news earlier
this month, she had said that at some point, we may tire of endless
rounds of chemo and visits to doctors and waiting in waiting rooms.
"That's no way to live," she had said. She hadn't said anything about
the indignity of voiding your bowels in a strange motel room.)
Don also said that I was the most understanding companion. I said
that was why I had married him - so I could take care of him.
We finally got checked out of the motel and had a late breakfast
at 11:30. Over orange juice, I asked Don if he'd like to cut the
trip short and go home. He wondered if that were "practicable."
I said we would find a way, that he merely needed to make the decision
and I would make it happen. He said nothing further about it until
we got into the car. I looked at him as if to say, "Okay, which way?"
He said, "Let's go on to Moab."
We arrived around 2:00 PM and dropped our stuff off at the front
desk since our room wouldn't be ready until 3:00. We went to a
local pharmacy where Don got his Compozine prescription refilled.
We got posters and a book on roadside geology at the visitors' center,
where I also asked for a place that rented wheelchairs. I knew from
his weakness this morning that he wasn't really ot to hiking even
short distances. So we rented a wheelchair at Walkers Drug - a name
Don found ironic: wheelchairs from Walker's.
Don had asked at the visitor's center for a good sunset location in
Arches and we planned on getting out there by then. But it was now
3:00, our room was ready, so I wheeled him up to it and we both
collapsed on the bed and fell asleep.
At 6:00 PM, we got up and went to dinner at Stiff's, where we had
lots of food: hummas, salad, veggie pizza. Don ate lots of
it, and that made me feel good.
We drove to Arches, but found the visitor's center there closed. We
went on into the park anyway. On our way in, Don said, "It was kind
of the pharacy to fill the prescription even though all I had to give
them was the empty bottle."
"On the whole," I said, "people are kind and helpful. You've just
got to give them the space to do it in."
We drove to Delicate Arch overlook,
where I got the wheelchair out of the car and put Don into it. I
pushed him to the "Lower Viewing Area," a distance of a little more
than a city block. I got a decent picture of Don, but not one of me.
A nice man with a wife and two daughters came up just then and offered
to take our picture, which he did. It came out beautifully. Another
kind and helpful stranger.
It was a gorgeous place. I was so glad we came. I decided we should
come back tomorrow, after our trip along the White Rim.
On the way out of Arches, Don said, "This is the first day I've
gone a whole day without a headache." Apparently, the headache
this morning in the motel in Green River had been forgotten.
We had ice cream on our way back to the motel. Once we got back, Don
went right to sleep while I watched silly TV and SciFi cable until
1:00 AM.
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Arches
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Monday, May 29
On our way to visit Canyonlands, we stopped at a rock shop on
the edge of town. A cute young clerk there enjoyed showing me
the various mineral specimens.
"How about something pretty for your wife?" he asked.
"Oh, he's right over there," I said, gesturing towards Don.
The remark didn't seem to phase the clerk, but I noticed an
older gentleman behind the counter pricked up his ears.
We got the $50 year-long pass at the entrance to Arches, but
instead of heading into the park again, we head for Canyonlands.
Don directs me down the Shaefer Grade. I have never been so
terrified in all my life! True, the road is flat and solid
enought, but there's a 1200 foot drop just four feet from the
driver's side window! Every time I look out that way, my heart
starts racing.
We drove along the White Rim for about an hour, then turned around.
On the way back, we stopped at Mussleman Arch - which I walked
across because I "had to" - and then at the Colorado Overlook,
where the precipice over which one could easily drive was unmarked.
We proceeded back to Moad along the Potash Road. The scenery was
beautiful and austere, punctuated at the end by the sight of the
ugly and unnaturally blue potash ponds.
Back at the Slickrock Cafe, we ate a fair amount and drank a great
deal. Then we returned to the motel, deciding against a return
trip to Arches after all. Don fell asleep almost at once - 7:30 PM
or so. I watched TV again until about midnight.
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Canyonlands
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Tuesday, May 30
We woke around 9:00 AM. Don had not gotten up in the middle of the
night to do his etoposide, the first time that he's missed his mid-night
dose. He takes the compozine and tamoxifen around 9:30 AM. I
cannot entice him into the shower, though we both sweated up a
storm yesterday (it evaporated immediately, of course). He says
he feels chilled and a shower would only make it worse.
Checkout is 11:00 AM, so I shower and pack, load the car, then come
back for Don and wheel him to the "Cannonball." The first thing
we do is return the wheelchair. I'm kinda reluctant to let it go.
It's been a real convenience.
We have breakfast at Jailhouse Cafe, and excellent spot. We then
walk two blocks to the Knave of Hearts bakery. This place used to
be in Don's neighborhood around Bolinas, but their rent got raised
so they moved - way out here! Don was pretty tired from his two-block
walk, so I brought the car around and picked him up.
I went back to the rock shop on the edge of town, where I had seen
some lovely rainbow sandstone that I had decided I couldn't leave
Moab without. I got to talking with Bob, the older clerk. He said
he was gay and that he had picked up on the fact that Don and I
were a couple. He had just recently lost his partner of thirty
years. "I feel a big hole here," he said, touching his heart.
His partner had also succumbed to cancer.
We talked about the cute clerk who had helped me the day before.
"He hasn't got a clue," Bob said. "He's very anti. They make
jokes and say things, things that hurt."
"That's because they don't know who they're talking about. If they
knew they were talking about their own friends and co-workers, maybe
they wouldn't be like that. You don't need hatred to be a bigot.
All you need is ignorance and habit."
"There's no point in being out around here," he said. "There's
nothing to do."
I bought the rock and Don and I headed out of town, picking
up I-70 north of Moab, heading towards St. George. We went through the
San Rafael Swell, one of the most spectacular formations in
Utah, and the best reason to drive Interstate 70. As we drove,
I reflected on Bob's "hole" in his life. I wanted to tell him,
"You must realize, about that hole, it's not him, it's you that's
gone. The you who could enjoy life by yourself, who didn't need
to share a sunset to enjoy it. There's a you that doesn't exist
anymore, that you used to rely on. But that person is dead. You
can mourn him, or you can celebrate the fact that you are forever
changed."
We make it to St. George, but get lost several times trying to find
Marty's house. I finally have to look up the address in a local
phone book. The directions he gave us were totally inaccurate,
getting us to the neighborhood but not within blocks of his house.
When we finally got there, Don was very weak. I didn't realize
how weak until he walked up the Marty's front porch - then couldn't
lift his legs up the two steps to the front door. So when Marty's
wife opened the door, I swept Don up in my arms and carried him
inside. "Sorry for the dramatic entrance," I said, "but I think
Don's dehydrated."
We got Don settled on the couch in the cool, air-conditioned
livingroom, and got us both glasses of fruit juice. Don seemed
to revive somewhat, but he still needed help getting around.
My "super coper" mode kicked in: I called Dr. Prados's office
to relay the symptoms; I called the airline to make sure there
was a wheelchair ready to get Don to the plane tomorrow; I called
Curtis to see if he could come pick us up at the airport - he
couldn't, so I called Glyphic and Mark answered. Mark said he
didn't know who could come get us, but someone would and I
wasn't to worry about it.
Dr. Prados's office called back - I think it was Margaretta.
She said to put Don immediately on 16 mg. of Decadron. I was
a little suprised at the high dosage, but thankful I had brought
some along just in case (even though he was off the stuff by the
time our trip started). I get the pills and give them to him
at once.
Things settle down for a while while Louise, Marty's wife,
prepares dinner. I show her the rainbow sandstone.
"You've got to admire the artist," she says.
"Yes," Don says, "I'm fond of all his works."
Joseph, Marty's youngest son (around four years old, I think) is
fascinated by us. He watches me unpack in the office/spare
bedroom they put us up in.
"My daddy's a genius," he tells me. "He can fix anything."
He is interested in the rainbos sandstone. I tell him he can
hold it if he is very careful with it. I unwrap it and
hand it to him.
"It's so light!" he exclaims.
Just then, I hear Don call from the bathroom. I put the sandstone
back and go to the door that joins the bathroom and the bedroom
and open it. I find Don on the floor, his pants around his
knees.
"My legs just gave out from under me," he says.
As I bend over to help him, Joseph stands awe-struck in the
bedroom, watching. "Please get out of here," I say as
calmly as I can. He scoots.
"I wet myself," Don says. A fear reaction? I clean him up and
get him to bed, but just barely. I hoist him onto the bed with much
grunting and discomfort for us both.
When dinner is ready, I wheel Don to the table using an office
chair as a substitute wheelchair. The meal is good,
but afterwards I have a bout of diarrhea. My own fear
reaction? Or still the "altitude sickness"? I've had it nearly
every day we've been here. I'm beginning to think I'm allergic to Utah.
After dinner, I roll Don back to the bedroom/office and put him
to bed. Marty, Louise, and I chat. I remark how unlikely it
seems that a gay couple's best friends in Utah should be a
perfectly average Mormon family. The goodness of people shines
through again.
After the kids go to bed I read the local paper for a while. One
story catches my eye:
Federal officers from the Bureau of Land Management and the
National Park Service took Patrick Diehl, 53, into custody
about 3:40 PM and charged him with failure to disperse. They
took him to Purgatory, approximately 175 miles away. As of
late Sunday, no bail had been set.
The Color Country Spectrum, Monday, May 29, 2000
Integrity has its price, I guess. I myself would have difficulty
dispersing, even under the threat of Purgatory.
The metaphysical gets downright personal around here.
When I go to bed, Don is lying
on the floor, not in the bed. I lie down next to him, trying to
determine why he is on the floor and if he wants to get into bed
and if so, what's the best way for me to help him.
We're in this position when Marty comes in to turn off the computer.
He looks startled to find us on the floor.
"Are you stretching?" he asks, perhaps thinking of Don's yoga practice.
"Yes," Don answers.
Marty leaves, satisfied, but I am worried. Don tries to rise off the
floor, but cannot even get to his hands and knees - his left arm keeps
giving way. I get him halfway onto the bed, then coach him in getting
the rest of the way. "Try slithering," I say, "like a snake."
"Like a skenk," he says.
I decide to bring one of the bottled waters in from the car. When
I step outside the front door, I startle a Utah banded gecko
resting on the porch. An endangered species, right there on their
front doorstep!
Around midnight, Don wakes to go to the bathroom. He needs my help.
As I help him lower himself onto the toilet, I feel urine splash my
feet. I mop the floor with a towel and clean him up the best I can
afterwards.
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Wednesday, May 31
We awake with a "Yaaaaahhhhh BOOM!" from Joseph running down
the hallway outside our bedroom. Don comments, "I've never understood
why small persons feel the need to make the biggest possible noise."
"I think it has something to do with boundaries," I say.
"If you have no concept of 'others,' it it's hard to take their
feelings into consideration. The Catholic church even teaches
that you cannot really sin until you have some notion of 'other' - someone
to sin again."
Don mutters in agreement, or perhaps just to humor me. It is, after
all, rather early in the day for Catholic theology. But I am
undeterred: "Perhaps that's that the apple really gave to Adam and
Eve: a sense of otherness. That's why they covered themselves,
because suddenly they weren't the same person, an undivided self.
Maybe children are on the right track after all. They see the whole world
as connected to themselves."
I guess that's what makes magic possible for children, too. If the
whole world really is just a part of yourself, then surely something
you yourself can do can change the world. What an overwhelming
responsibility!
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Thursday, June 1
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Friday, June 2
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Saturday, June 3
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