Sunday, June 11
Practically on a whim, Don and I decide to go to the San Jose
Gay Pride Festival. I've only been once before, and I don't
think Don ever has been. It's a sunny day, it would make a
nice outing, and the SVGMC CD's will be on sale for the first
time. I hope to buy about 10 of them and get all my
Christmas shopping done early.
My one concern is a wheelchair for Don. While I am getting ready
to go, he calls around to find one for rent. There are none.
Apparently, this is Stanford's graduation day, and all wheelchairs
in a 30-mile radius have been rented. I fish around for alternative
solutions, but then Don finally says, "Let's just go. I'll be
all right."
His enthusiasm for doing something is reason enough to do it, so
we hop in the Beast and are on our way.
It's an even shorter walk from the parking garage to the festival
site than it was yesterday from the garage to the museum, but Don
is practically falling into my arms by the time we get there.
Fortunately, everything I wanted to do was right there at the
entrance: the GALA 2000 booth with the Chorus CD's on display,
and the El Camino Reelers dancing up a storm on the mini-dance floor
just behind the booth. I bought 10 CDs and then went to check out
the dancing. The Reelers were just finishing their tip when Don
and I walked up. I saw Rick LaRue on the other side of the floor
and went over to say hi and congratulate him on joining Glyphic.
He invited me to dance and I said yes and we were off and away
across the floor, Rick leading (even though I'm taller) and me
following somewhat stiffly. It's been years since I've two-stepped.
Don watched from the edge of the stage.
Afterwards, several El Camino friends came by and said hello,
including Kim and Bennet, who said next weekend would be a good
time for us to see the rest of Queer As Folks.
I walked Don over to a bench and sat him down. Kim entertained
him while I went in search of fruit juice for him and lemonade for
me. I ran into a few more friends on the way. It was a delightful,
sunny day, and there were plenty of good-looking men to oogle.
I returned with an iced smoothie, which Don greatly enjoyed.
However, since we were in the shade, he began feeling a little
cold. So we left the little grove of trees near the dance floor
and found a bench with a decent view of the main stage. There
was plenty of eye candy passing by as well, so we were well-entertained.
After about an hour, during which I got myself a Polish sausage (what
fair is complete without one?), Don and I took off across the great
lawn to the Pride Without Restraint booth, where I though I'd seen
a friend of mine in a Mr. Santa Clara Leather outfit. He was no
longer there when we got there, but crossing the 100 foot lawn proved
to be exhausting to Don. He couldn't straighten his left leg. I
took him in my arms and carried him to a spot of shade. After resting
for a bit, we walked back to the car. I supported him most of the
way.
Although we both enjoyed the fair, it proved to me that we need to
rent a wheelchair full time. Worrying about getting Don from one
place to another pretty much clouds the experience. I hope we get
an explanation for his weakness from Dr. Peterson when we see her
this coming Friday.
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Monday, June 12
I call home before lunch and ask Don if he'd
like to join us. He says he's too tired to
walk to the office, so I offer to come home and
pick him up. He accepts the offer eagerly.
I stop by Palo Alto Orthopedic and rent a
wheelchair before going home for lunch.
After this weekend's experience at the San Jose Pride
Festival, I've decided we should not be without one.
I tell Don about it when I get home, and he seems pleased,
but he's in bed. He has changed into his new
shorts, but he is looking very down-at-the-mouth.
He says he doesn't really feel like going to
lunch after all. I had agreed to meet the other
guys at Printers Ink at 12:45, so I left, but
I was worried. He looked very depressed. I
resolved to get home early.
Around 3 PM, I called home to see how he was
doing, but there was no answer. I figured he
was out working in the yard, so I left a message
in his voice mailbox.
He had not called back at 4:00, but I had a
medical exam for the life insurance I'm going to
take out to cover the mortgage in case of my
death. The exam finished about 4:45 and I
decided I would go home. I had a growing sense
of unease. But first, I thought I would make
an ethernet cable long enough to reach from
the hub in the office to the livingroom. That
way, I could work at home tomorrow and keep an
eye on Don.
It was an hour later that I left for home. I
had a brief, bad premonition, but told myself not
to think so negatively. Everything is fine,
I told myself, just like it always is.
Everything was not fine. When I got home, I
called out. I heard a weak response from Don in the
bedroom. I started towards the bedroom but
stopped when I entered the hallway outside the
small bathroom.
The way was blocked by a pile of feces. It
looked like it had been there a while. It had
been stepped in.
I went around the other way, through the
livingroom, and got to Don in the bedroom.
He looked very distressed, and there were feces
smeared on his left leg and hand. It smelled
as if he had urinated in the bed. I consoled
him and told him I would get him cleaned up
as soon as I could.
I figured I would get him into the tub, but first I
had to clear the way to the bathroom.
I got to work cleaning up most of the mess in
the hallway, then took a pan of hot water and
anti-bacterial soap into the bedroom. I got
Don to scoot onto a large bath sheet and I washed
him down as best I could.
He wasn't speaking, save for brief, single-word
answers to my questions.
"Did you fall?" I asked, remembering the incident in
the Green River motel.
"Yes."
"Did you hit your head?"
"No."
"Do you think you lost consciousness?"
"No. It wasn't a seizure."
"No twitching?"
"No."
At this point, I thought his brief answers were
simply because he was mortified. I reassured
him, telling him everything was all right, that
I was here to take care of him. I could tell by
how dried out the shit was that this had all
happened about an hour ago, around 5 PM. "You
call me if anything like this happens," I said.
"You shouldn't have to deal with this alone."
"Thank you."
"Do you want your glasses?" I asked. He looked
at me and then off into the air. He got a
distant look on his face, as if trying to
remember something. His mouth opened but he
didn't speak.
This worried me. It was beginning to look like
this was more than a repeat of the incident in
the Green River motel.
With Don reasonably cleaned up and off the wet
spot in the bed, I went
to draw a bath. I also brought in the camping
pad from
the car and started setting up a bed for us in
the livingroom. The bedroom mattress would
have to be aired out at the very least.
It was when I tried to move him to the bathroom
that I realized how big a problem we had. He
could barely move any of his limbs and he
could not sit up. I had planned on him washing
himself at least part of the way while I called
a doctor, but I didn't dare leave him alone in
the tub. When I washed his upper chest, it
turned a bright red. I was truly alarmed.
But the bath seemed to revive him somewhat. I was
able to get all the caked-on stuff off, but
his fingers needed to soak to loosen the dirt
beneath his nails. He seemed alert enough to
leave in the tub, so I went and made the bed in
the livingroom, using plastic sheeting left over
from building the raised beds to put a vapor
barrier beneath his half.
I then very carefully and gingerly got Don out of the tub
and half walked, half carried him to the livingroom, where
I put him down on the newly made bed on the floor. It
was 7:30, an hour and a half after I had gotten home.
I called Stanford University Hospital, though I knew it
was too late to get in touch with Dr. Peterson.
Don lay sprawled on the bed the way I had lain
him there, unmoving. As I stumbled through the endless
voice menus trying to get a living person, I wondered
what the hell I was thinking, trying to wash him up
first. I should have been on the phone to a doctor or
a hospital or 911 the minute I got home.
I finally got through to the hospital switchboard, who
connected to a Dr. Liao, the neurology resident on call. I started
describing the situation I found when I got home - emphasizing
the loss of bowel and bladder control and the apparent
mental confusion -
but I didn't get very far before a piercing scream cut
through line from the other side.
I could bearly hear Dr. Liao and it was
apparent from what I could hear that she was trying to deal
with a child having a temper tantrum. Much as I sympathized
with her as a mother, I was very angry with her as a doctor.
How could she possibly advise a person in a critical medical
situation under these conditions? I'm not saying she should
have been able to control the child - that is a mystery
beyond my fathoming - but she should not have accepted the
on-call assignnment when she couldn't hear her patients or
they her over the caterwailing of a two-year-old.
I told her I was finding it very difficult to concentrate and
give her accurate information under these circumstances, and
that it was painful to try to listen closely to what she was
telling me when we kept getting interrupted by shrieks.
I was able to understand that she thought Don ought to be
taken to the emergency room in order to determine if he had
had a seizure after all, despite his report of being
conscious the entire time and have no other symptoms of
either a grand mal or focal seizure. It was while trying
to clear up this point that the child burst in with yet
another peircing wail and Dr. Liao left the phone to
try to deal with it.
Enough is enough, I thought. Besides, she'd given me the
push I needed. I hung up on her before she got back to the
phone and dialed 911.
Within less than five minutes, there was an ambulance and
two fire trucks at my front door. Somewhere between five
and seven people poured into our livingroom, all asking me
and Don the same questions, but asking Don in particular
who was the president, what day of the week it was, and what
year it was.
Don got the president right, but waffled on the day of the
week. I told them that was normal (since the hemorrhage).
But when they asked him what year it was, he got that same
distant look on his face he had when I asked him if he
wanted his glasses.
That's when I got really scared.
I don't know how soon after that we were in the ambulance,
headed for Stanford Hospital. They had me ride in back with
Don because I knew his medical history by heart and could answer
detailed questions about it. Don was conscious but quiet the
entire ride. At one point, the paramedic reached out to me
and asked him, "Who's this?"
Don seemed to be surprised that there was someone else in
the ambulance with him. He looked up at me. "That's my
partner," he said.
We got to emergency and Don was receiving attention and care
very quickly. It was the doctor who first saw him who first
said "pneumonia."
I felt like a complete idiot. Of course, pneumonia! Hadn't
I seen Midnight Cowboy? Didn't Don exhibit all the
classic symptoms? The only thing missing was the cough. He
hadn't coughed once.
Don was admitted to the hospital and finally checked into a
room at 2:00 AM.
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Stanford Medical Center Emergency Room
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Tuesday, June 13
Many tests are ordered: a complete EEG, a chest X-ray,
and an MRI. By the end of the day, they are certain
that Don has pneumonia. There is some indication that
it might be pneumocystis carinii pneumonia, infamous for
doing in people with HIV and not unheard of among
glioblastoma patients whose immune systems are suppressed
due to steriods.
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Wednesday, June 14
Six doctors come in about 9:15 to give Don
the once-over: Dr. Carlson, Dr. Wu, Dr. Simmons,
and what I took to be three student doctors doing
their residencies.
Dr Wu asked Don about being out of breath.
Don: Some, still.
Dr. Carlson: How about the pain in your chest, Is
the pain better or worse?
D: About the same, but I'm more cautious with it.
C: Where is it?
D: Upper chest.
C: So it's diffuse? (Leading the witness!)
D: Yeah.
Dr. Wu: Are you coughing a lot?
D: A little
C: Bringing anything up?
D: A little bit.
C: What does it look like?
D: (Long pause) I haven't looked at it.
C: Your right eye is drooping. It wasn't
doing that yesterday. (To Lou:) Is that new?
Lou: It happens when he's tired.
C: Any diarhhea, nausea, pain when you pee?
D: No.
W: Mouth or throat sore?
D: No.
C: (Looking in mouth) There's still a little
thrush.
Carlson then did a general physical exam.
Dr. Simmons noticed I was typing away on the
Vaio and asked, "You aren't taking
notes, are you?
"Yes," I said. "It all goes up on our website."
One of the residents was fascinated by the Vaio and
wanted to know what it cost. He said they were
available in Japan last year.
Dr. Carlson resumed the examination:
C: Your lungs sound nice and clear. We want to get
a good idea about what's going on in there, so
we're going to look at the chest X-ray.
Dr. Simmons: As well as the EEG and the MRI.
Do you feel like getting up and walking around?
D: I'm afraid to.
C: Even sitting up would be good.
W: It expands the lungs.
S: You don't have to go anywhere, just kick him
(Lou) out of that nice chair.
C: But don't go anywhere without a nurse.
L: I'll be with him anywhere he goes.
C: Any questions?
D: No.
L: What about discharge?
C: Not today. We're still in the data-gathering
stage.
After they left, Don told me he had asked for
an HIV test. I said I thought that was a good
idea.
Don said, "The doctor doesn't think it's one of
the signature pneumonias."
"Pneumocystis?" I asked. If Don is HIV-positive and
has pneumocystis carinii pneumonia, then by definition he
has AIDS.
"Yeah," he said. "He doesn't think it's that. But I
think it's a good idea to rule it out."
I was impressed with his level-headedness. Dr. simmons
came in just then with the consent form. I
mentioned I had just had an HIV test on Monday.
"We were both negative a year and a half ago,"
I said, "but it's good to check."
After Simmons left, I said, "You know, an HIV
test was one of the first things I suggested
to Dr. Remen when you first had your hemorrhage.
It was the first thing we argued about. She
refused to get you one."
"What? Why did she do that?"
"She was afraid of the reprecussions."
"'I'll never get into grad school now!'" Don lamented.
"Was she afraid for my reputation?"
"That, and about insurance coverage."
"Well, at the time, that would have been the
least of my worries."
"I thought so, too. We were all pretty desparate
to find out what had caused that thing."
Later that day, we hear from Dr. Simmons that the
EEG has ruled out any seizure activity and
that the X-ray suggests
it is pneumocystis. He tells us they
have decided to schedule
a bronchoscopy to get a sample and make sure.
As we waited in the surgery prep area for Don's
bronchoscopy, I tried to pass
the time of day. I noticed a Van Goch print on the wall.
"That's a really nice Van Gogh over there," I said.
"It's too bad you don't have your glasses so you can see it."
"Oh," Don said, looking in its general direction, "I
can get an impression of it."
I told him that was one of the worst puns he'd ever pulled
off. He thanked me for the compliment.
They took him in to the surgery and told me, more or less,
to get lost, so I went and had an ice cream, then read
The New Yorker in the waiting room. An hour later,
the doctor came out to say the examination had gone well.
She said Don would be back in his room in about half an
hour, and that I should wait for him there rather than stay
with him in the recovery room.
This information proved to be inaccurate on both counts.
It was an hour and a half before they brought him back to
the room, and he was in a high dudgeon when they did.
First, he said, they had had to wait for an hour
for a second doctor. When he finally arrived, he refused
to use any anaesthetic on Don because he said his blood
pressure was too low. So they used an aerosol that Don
had to inhale while the procedure was in progress. So
instead of "the Cadillac of drugs" (Versped), he got the
Edsel of procedures. Don said he
was yelling and tearing their hands away from him the entire
time. Then they left him alone in the recovery room for an
hour with no one to talk to and no one watching him. He
felt misled, mistreated, and abandoned.
I kind of liked his feistiness, though I recognized some of it
as his latent "drama queen" coming out. He could not have been
delayed for an hour before surgery since he went in at 3:30
and I was told the procedure was done at 4:30. Still, I
was more determined now than ever to stay with him in the
hospital, including overnight. He needs reassurance when
faced with these glitches. He needs to know that someone
is looking out for him. And,
frankly, I need the reassurance, too. I feel he gets better
care when I am there to advocate and agitate for him.
I went home briefly Wednesday night. There were things that
had to be done. Two days of record heat had done their work
on the bedding which still lay, unwashed, in the clothes
hamper. I took them to the garage and started to wash them.
Outside, I noticed the Nile lilies were drooping from lack of
water, so I started hosing them down. While I did so, Nicole
leaned over the fence and asked me how Don was doing. I told
her, and she was so upset she started crying. But she said
she and Charlie would do anything to help. Later, as I was
continuing with the wash, Greg came over from across the
street. He, too, had seen the ambulance and wanted to know
what was going on. I told him about the pneumonia and that
Don would be in the hospital for at least a week and that I
would be there with him most of the time. Greg offered
his services, and I asked him to remove any mail he saw collecting
at our house.
I returned to the hospital deeply moved by the neighborliness of
these folks who have known me for less than three years and
have known Don for less than one.
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Thursday, June 15
Some confusion among the doctors. There is a verbal
report that says Don does have PCP and a written report
that says he does not. Don is taken for another chest
X-ray, and while he's gone, Dr. Peterson comes to visit
and we have a serious talk.
She tells me that there is indication in the MRI from Tuesday
that the tumor is growing again, in much the same areas where
it was growing in the March MRI. Plus, she said, there is
indication of new growth in the left hemisphere. "The probable
cause of that," she said, "is that it has been seeded by
tumor cells circulating in his cerebral spinal fluid."
Well, there it was. I said, "I have to ask you something I
don't have the courage to ask in front of Don. Once something
like that happens, once tumor cells start to circulate - do
people recover from that?"
Her eyes got a very sad look. "How much do you know about
this disease?" she asked.
"I know from talking to other care-givers of glioblastoma
patients on the web that this is very bad. I'm hoping
that he'll make it to my birthday, in September. But I gather
that we'll be lucky if he does."
She looked me in the eye and nodded.
Don arrived back from X-ray about then. He was very pleased
to see Kendra.
"So, how are you doing?" she asked.
"Fine," Don said heartily. "And how are you?"
"I'm doing okay," she said. "Thanks for asking."
I went home briefly to pick up mail and check on the house
and garden. When I got back to the hospital, Don had been
moved to a private room. I wonder if my snoring, which was
notorious among the night nurses, was part of the reason he
was moved out of the semi-private room. Whatever the reason,
it is a blessing.
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Friday, June 16
After breakfast, Dr. Greenewald stopped by. She confirmed
that "that tumor seems to have recurred," a more blunt
assessment that we got yesterday. I
glanced over to Don to see how he took it. It did not seem
to alarm or surprise him, but he did ask if it was still a
good idea to continue the Decadron.
"Actually, it may help reduce some of the inflamation in
the lungs," Dr. Greenewald said, confirming what we'd heard
yesterday.
The morning rounds came in shortly after that.
Dr. Wu: Have you noticed any fevers or stomach upset?
Don: No
W: Are you coughing any more?
D: No.
W: Are you able to walk to the restroom or sink?
D: No, because of these tube.
W: Are you able to get out [of bed] at all?
D: No.
I mentioned that the doctor last night said he shouldn't
exert himself. Dr. Wu said she was trying to assess whether
he could get up, not trying to suggest that he should.
Later, Dr. Simmons came in to say that it would in fact be
a good idea if Don could spend some part of the day sitting
up in a chair. "It will give the lungs a chance to
exercise," he said.
Jim stopped by for a visit. Don wasn't able to interact
much, but they were able to talk some. Don seemed more
capable of engaging in short but nevertheless connected
conversations today than he was yesterday.
Curtis and Mike also came by later. They very thoughtfully
kept their visit to half and hour. Curtis said Don's illness
was bringing out the nurturing, caring side of me, something
that was otherwise not in evidence.
"Well, if you're helpless, then I'm nurturing and caring,"
I said.
"What it really points out is that you're at your best when
the chips are down," Mike said.
Jnani called around six o'clock to say that she was too tired
to come for a visit this evening. She had spent the whole
day at a hospital, helping a friend and getting her checked
out. She said she hated to disappoint Don, but that she would
come by for a visit tomorrow morning.
I conveyed this message to Don, though I think he had some
trouble grasping the time scale.
Kim and Bennet were our last visitors of the day, arriving
around 7:30 and leaving a little after 8:00. They brought
a pastel rainbow-colored beanie bear. When Keith came in to help
with Don's intravenous, Bennet sort of lit up. After he left,
Bennet said, "Ding, ding, ding!"
"That's what Don and I thought," I said, "but then he started
talking about his wife and two kids back in Alabama."
When Mike and I had a similar conversation earlier in the day,
Mike responded to Keith's family situation with, "Well, we all
know how definitive that is." Still, I take people on their
face value. If they talk about their wife and children, I
assume they're straight, because I assume that's how they would
define themselves.
Don and I finished up the evening watching some rather
well-produced science fiction series on the SciFi channel.
If I were ever to get cable, the SciFi channel is probably
the reason I would get it.
As I go to bed I worry about how Don is handling his new
oxygen mask. He complained about dryness, so they gave him
one that adds a mist of water to the air in the tube.
So much mist comes through that he is constantly removing
the mask to wipe his eyes and face, thereby reducing the amount
of time he is actually benefiting from the oxygen. I hope
he doesn't pull it off in his sleep - or have it just slide off
his face because of the water.
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Stanford Medical Center, Petersen Cancer Ward
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Saturday, June 17
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