What I wanted to yell at the President

I watched the address to the joint session of Congress a couple
of weeks ago with a friend. In general, I really like watching
Obama speak, because it’s such a relief to have a President who
isn’t embarrassing me with every sentence out of his mouth.

But there was one point when I was talking back to the TV
screen. It was after he’d talked about how he and everybody else
in the country could design a system from scratch that would work
better than the one we have, but he believed that we could get
more done by building on the system we have.

So then he said, “We will place a limit on how much you can be
charged for out-of-pocket expenses, because in the United States
of America, no one should go broke because they get sick.” I
remarked to my friend, “So how is that incremental?” At the time,
and until I just looked at the text of the speech, I believed he
actually had used the word incremental.

The reason I’ve continued to think about this off and on for
the last two weeks is that I think that really is the reason
health care reform has been so hard to get. There really isn’t a
consensus in this country that no one should go broke because they
get sick.

This is why, although it was a well-delivered speech, the polls
all found that it didn’t convince anyone. People who believe that
they won’t go broke when they get sick because they’ve done the
right things all their lives, and that the people who will go
broke are lazy and improvident, want to hear why this new system
isn’t going to cause them to go broke because other people get
sick. And the President did say that, but not in a way that anyone
really believes.

The reason I understand this better than President Obama does
isn’t because I’m a better politician than he is. It’s because
he’s spent his life doing what the system says he should do and I
haven’t. I know people who really believe that I should go broke
when I get sick because I retired at the age of 50. They don’t
say it in such crude language, but their disapproval of someone
making that choice says it for them.

So the right way to pitch the reform shouldn’t be telling sad
stories about the people who go broke because of the present
system. It should be making the point that the present system
is in fact making you go broke because other people get sick,
and spending money differently will make you go less broke as
well as making them get less sick. I don’t say I know how to do
that, but I can see that that isn’t what the President is trying
to do.

Read the other stuff I’ve written this morning

Once again, it’s almost lunchtime on Wednesday, and I’ve been
writing all morning, and I don’t feel the necessity of writing a
blog post to keep my hand in as a writer, so you can read the
other stuff I’ve written.

Not the emails

I will spare you the emails I wrote to the person I’m trying to
schedule a December concert with, and to the condo association about
the time and date of the proposed meeting, although there was a
lot of thought that went into how to word those.

Comment on another blog

Reading my RSS feeds before breakfast, I found that Phil
Greenspun has been writing a long article about health care
reform, which expresses a lot of the same frustrations I feel
about the current discussion, but missed a couple of points I’m
frustrated about, so I
wrote him a comment. Actually, the page that comes up when you
say you want to comment strongly suggests that you might rather
write an email if you aren’t sure your ideas will still be
interesting in two years, so I originally wrote him an email, but
he emailed me back suggesting I post it as a comment, so I did.
When you read the article,
mine might still be the second comment, or if you only want to
read the comment, you can go to my
comment space
and see the health care comment, plus an
anti-Verizon diatribe I wrote last winter.

Posts on my own blogs

I wrote a report
on last night’s band meeting.

For the meeting, I had as usual transcribed a new piece, and we
found a bad mistake in a previous transcription, so there’s a post
on the Serpent
Publications blog
about those things.

RIP, Senator Kennedy

I’ve been thinking quite a bit about Ted Kennedy since he died
a couple of days ago. I grew up in Massachusetts, so via the
miracle of television, he’s spent a lot of time in my living room,
even though I didn’t know him personally, and I only remember once when
we were in the same (large) room together.

Many other people have been analyzing how his work in the
senate shaped America as we know it today. I’ll just tell you a
couple of personal stories.

Chapaquiddick

The speech he gave where he offered to resign is the other
television event I remember from the summer of 1969, besides the
moon landing.
It was a well-delivered speech, and an effective piece of persuasive
writing. The person who is usually credited with writing it,
Theodore Sorenson, was proposed as head of the CIA in the Carter
administration, but the appointment was withdrawn. I remember one
of the arguments against it being that he had written that speech,
which may have contained some lies, and certainly didn’t tell the
whole truth. At the time, I was surprised that the opposition
would have been stated that way, since I don’t see how never
having told a lie or suppressed a truth can possibly be a
qualification for being head of an intelligence agency.

Money from an insurance company

The only time I actually called on him for help as a
constituent, his staff was quite effective. I had been using what
was then called Harvard Community Health Plan (HCHP), one
of the original
manged care organizations, for my health care for about 15 years.
I had been fairly satisfied with the care I’d received, but once I
became a contractor and no longer had my coverage paid for by my
employer, I found dealing with their billing organization
increasingly annoying. The last straw was when they wrote that
they were cancelling my policy because they hadn’t gotten my check
on time. (It had actually crossed that letter in the mail.)

I went into a frenzy of letter writing, and wrote to their
billing that they
weren’t cancelling me, I was cancelling them, and wrote letters to
the two doctors I had a relationship with explaining what was
happening.

When they didn’t return the check I’d sent after a month or
so, I wrote to Senator Kennedy, explaining the situation. In
fact, I was more concerned that he be aware that individuals were
having this kind of problem retaining coverage than that he get me
my check. I had both a diabetes and an asthma diagnosis at this
point, and I suspected HCHP of cherry-picking, and also of not
really wanting to deal with billing individuals. His office sprang into action and called both the
HCHP billing office and the Massachusetts Insurance
Commission.

Less than a week after writing that letter, on the same day I got a letter in
the regular mail from Senator Kennedy’s office saying what they’d
done, and how I should follow up if I didn’t receive my check in a
week, and an express delivery of the check from HCHP.

Cancer diagnosis

I heard of Senator Kennedy’s cancer diagnosis while I was on my
way to pick up Bonnie’s
belongings from the hospice two days after she died. I remember
wondering how much difference it would make that he was richer,
more powerful, and maybe more knowledgeable about the health care
system than Bonnie had been.

The answer seems to be quite
a lot.
He was getting out of bed most days until the actual
day he died; he was at home with his family and friends and dogs
until the end; and while the brain surgery did affect his vision
and motor skills, he continued to do what he loved doing,
including sailing and writing letters until almost the very end.

Of course, it may well have been just the luck of the draw that
his surgery left him relatively unimpaired and Bonnie’s left her
unable to speak or move her left side, but it may well also have been a
difference in quality of care. If it happens to me, I hope I get
closer to the kind Kennedy got than the kind Bonnie got.

Massachusetts health care

There’s an article on slate.com
this morning called
Bringing Down the House: The
sobering lessons of health reform in Massachusetts
. Slate
is a large organization, and some of the writing is a lot better
than others. This one isn’t one of their better efforts.

The gist of the article is:

The expensive Massachusetts plan is not well-designed to systematically improve anyone’s health. Instead, it’s a superficial effort to clear the uninsured from the books and then clumsily limit further costs by discouraging care.

In the heat of the moment, I posted this comment:

I think this article ignores the managed care option. I’m sure the discussion of up-front costs and copays is true for some plan that’s available, and it may be the cheapest per month, but my impression is that the purpose of the current cost structure is to drive people to managed care. This gives them hefty copayments for some expensive services, but makes routine preventative care practically free.

My own plan (one of the subsidized ones) has more copays than some
really poor people have, but the choice for the mother whose
baby has a fever would be between paying a $50 copay for the
emergency room and waiting for the doctor’s office to be open
and paying a $5 copay.

Thinking about it while walking the dog, I realized that a
better criticism of the article would be to point out how divorced
from any facts the author’s thesis was. If you want to argue
that a given system discourages care, shouldn’t you feel that you
have to present some statistics that show less care is being used
under the current system than under the previous system?

I’m not an expert, but certainly there have been reports in the
press suggesting the opposite — for instance, that the number of
primary care providers (PCPs) accepting new patients has dropped because
all the people who have insurance now and didn’t before have
signed up for a PCP and are using him or her.

My personal experience of the new Massachusetts system has been
pretty good, once I gave up on figuring out how to apply for the
subsidized care myself and got the social worker at the clinic I
go to to help me.

There are several major things wrong with health care in
Massachusetts, but the insurance requirement discouraging use of
health care really isn’t one of them.

Bonnie’s major blood loss on April 1, 2008

I mentioned yesterday that
reading about the Silverwood family sitting on the coral reef with
the father dying from blood loss because his leg has been mostly
amputated by a falling mast reminded me of the afternoon I sat
with Bonnie while
she was bleeding from her gastrointestinal tract and getting
transfusions so she wouldn’t die. The
timeline says this
was April 1, 2008, a couple of weeks after we were officially told
to assume that she wouldn’t recover, and a month and a half before
she actually died.

I was driving to a physical therapy appointment, planning to go
on from there to visit Bonnie a the rehab hospital in Salem. I
don’t believe in doing phone calls while I’m driving, and
certainly not the kind of phone calls where doctors are explaining complicated
procedures to you and asking you to make treatment decisions. The
part of Cambridge and Somerville I was in has pretty busy traffic,
but you can sometimes find a parking place to pull over into. So
with these several calls, I was sometimes able to pull over and
answer the phone, and other times I had to attempt to call the
busy doctors back and deal with the switchboard trying to find
them. (This is in a parking space, but with a lot of truck traffic
going by.)

So the first phone call said that she was bleeding heavily and
they wanted my permission to do a transfusion. So I said OK.

But then the questions got harder — did I want them to do an
endoscopy? Did I want the blood thinning medications stopped? (I
was surprised they were still doing blood thinning medications.)
Could I give permission to move her from the rehab hospital to the
Lahey clinic? I said I’d be there in about an hour, and we could
talk about it better then.

When I got to Bonnie’s room, it was bustling. Normally there
were the two hospital beds with patients in them, and the noises
the machines made that were breathing for the patients, and an
occasional visitor or nurse speaking quietly. But this time
they’d cleared a fairly large area around Bonnie’s bed, and there
were several people standing around doing things. Eventually I
sorted it out that there was a special nurse keeping an eye on
Bonnie because she was critical, and the people actually doing the
transfusion.

They were telling Bonnie she shouldn’t go to sleep. She was
conscious, and writing fairly clearly — one thing I remember
vividly was that she wrote “Will I die?” We asked her whether she
wanted the endoscopy. I think the way they put it was, “Do you
want to go to the Operating Room again?” She said, “Yes.”

At this point the decision had been made to stabilize her as
well as they could with the transfusions and then move her to the
Lahey Clinic, which was better set up to deal with patients like
her, and the endoscopy would be there if there was one. So I
stayed around to keep her awake until the ambulance people
came to “pack” her. (That is the word they use.)

I had left hymnals in her closet, and one of the things I
carried in the bag I brought when I visited her was Rise
up singing
. So I started with the lullaby section in that,
but then moved on to the other sections. I must have sung
several things I probably hadn’t sung since high school. One of
the nurses sang along. When I started having trouble singing
because I was crying, a nurse would come hug me. The special
nurse who was staying there was afraid of Sunny (one of the good
things about this rehab hospital was that they were tolerant of
well-behaved pets visiting the patients), so I kept him leashed on
the other side of the bed from her. He was unusually good about
getting out of the way of the people working on the transfusions.

It was a couple of hours later that the EMT’s came to put her
in the ambulance. By then, I think she wasn’t as cold from the
blood loss and the transfusion process. For reasons which are
completely obscure to me, I let them talk me into taking all her
stuff, which took up most of the available space in my car.
(There were things like the walker with the seat which she wasn’t
ever going to use again, and a giant teddy bear someone had given
her.)

I had a recorder lesson that evening, and it was interrupted by
calls from the emergency room at the Lahey Clinic. Some of what
they wanted to know was why she was on medications I’d never heard
of. They wanted to know how she was “coded”, which meant nothing
to me, but then they explained that she was “Do Not Resuscitate”,
which we had agreed to verbally, but I’d never signed anything.
(I’ve talked to people who believe that doesn’t happen.) The
doctor I spoke to told me that it was unclear whether she’d make
it through the night.

Of course, when I called the following morning, I wasn’t able
to get any information about her status because the nurse didn’t
have a “code” for her. (Different code — a password you can set
up when you’re there so they know you’re someone they can talk
to when you call.)

Eventually, they did do the endoscopy, and found no problems in
the part of the colon they were able to access. There was a
section that was so squeezed in by the cancer that they couldn’t
get to it to see it. But it looked like all the bleeding must
have been caused by the blood thinners, not by actual ulcers.

It was shortly after this that the doctors started discussing
hospice care with us. One of the things they emphasized was that
if she were in a hospice, she wouldn’t get the transfusions if she
started bleeding again. But they also wouldn’t be giving her IV
medication like the blood thinners, so in fact, she never did
bleed seriously again.

If I had it to do over again, I think I’d be more pro-active
about making sure I knew what medications were being given and
why.

I actually think it would have been better to die of the blood
clots earlier in the process than the way she actually died, but I
given all the decisions she made both before and after the stroke,
I can’t say I believe she agreed with me, so I really couldn’t
have made a different decision about the blood transfusion and the
endoscopy.

http://rcm.amazon.com/e/cm?t=laymusicorg-20&o=1&p=8&l=as1&asins=1881322149&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr

Swine flu II

I posted the
previous installment
when I needed a fast post, so I
didn’t do any research about what’s already been said about the subject.

Subsequent googling turns us this
article from
2000
about tuberculosis and Spanish influenza. This is much
later than my conversation with my friend, and includes an
argument for tuberculosis being a contributing factor that I
hadn’t remembered. Typical influenza deaths occur heavily in
infants and the elderly, but in 1918, there was also a spike in
20-30 year olds.

Very little of what I’ve read about the flu in Mexico addresses
this issue, but
this
piece from
the New York Times
does point out that there were some deaths
among young adults, which was one of the factors that triggered the
concern on the part of the Mexican government.

Swine flu

With the coverage of the swine flu, I’ve been thinking about an
arcane fact I was told once about the epidemic of 1918.

A friend I went to college with went on to study demography in
graduate school. At that time (early 1970’s), the way you got a PhD in
demography was to study the “demographic transition” (when people
get prosperous enough to consider children an expense instead of
an asset) somewhere. We lived in Rhode Island, so he studied it
in Rhode Island.

This meant that he looked at essentially all the death
certificates issued in the first few decades of the
twentieth century. And one of the things he and other
demographers noticed about the spike in deaths from Spanish
Influenza in 1918 was that it
led to a decline in deaths from tuberculosis over the next decade
or so.

So the theory at that point was that the people who died from
the flu tended to be people who already had low-grade
tuberculosis.

So if the current flu coming out of Mexico is anything like the
1918 flu, and if the theory based on death
certificates in the twentieth century has any validity, then we
might be in better shape than some people are worried about. I’d
be very surprised if the level of low-grade tuberculosis, at least in developed countries, isn’t a
lot lower now than in 1918.

Of
course, further research may well have invalidated the theory
about the 1918 deaths, and there may be very little resemblance
between the viruses in 2009 and the ones in 1918.

Bonnie: Diagnosis

I posted previously about
the complete misdiagnosis when she first went to the doctor
complaining about being out of breath.

Once she got to the hospital, and they were running all the
tests they could think of all the time, things proceded much more
efficiently. She had scans during her time in December in the
Salem Hospital which indicated some kind of tumors in the
abdominal cavity.

She wrote my sister, who has a large Christmas party every year, on December 30:

As you probably know, I’m just out of the hospital after a stay of 3
1/2 weeks. Laura kindly bailed me out on Friday. I was hoping
against hope that I would feel well enough to come to your concert and
party today, but, with the long drive and all, it just wouldn’t be
prudent. Though I have short bursts of feeling fairly energetic, I
seem to need lots of bed rest and naps. I’m sorry to have to miss it.

Unfortunately the future won’t be clear sailing for me. Though the
underlying cause of the blood clots hasn’t been definitely diagnosed
yet, most likely I’ll be undergoing some type of chemotherapy at Lahey
Peabody, where my regular doctor is located. I’m trying to keep a
positive attitude, but everything feels very uncertain. So, please
think of me when you sing “Let memory keep us all”.

We thought of her not only when we sang Let memory keep
us all
, but also during the singing of
Messiah, where she had for several years been the
reliable person on the top line.

It must have been shortly after this that I asked her directly
if she had a diagnosis yet, and she said, “Yes. Cancer.”

I replied, “That’s not a diagnosis — a diagnosis is something
like Stage II Pancreatic Cancer, or Stage IV Liver Cancer.
Once you have that, then you can go on the internet and look
up the possible treatments and the 5-year survival rates.”

She said she thought she was scheduled for more tests that
might be to produce something like that.

When I asked her later, probably very near the surgery that
ended her life as a vocal conversationalist, she said it was a
cancer of the reproductive system. We assumed that this meant
ovarian, as that would be the scariest kind, and didn’t press
her.

I assume they had a diagnosis on paper, because there was one
course of chemotherapy in early February.

After the surgery on February 15 (see timeline), the
doctor reported on there being a lot of cancer, but not on any
specific diagnosis. It was only after this, when I became her
health care proxy, that I was talking to the doctors
directly. The first lengthy conversation with an opportunity
to ask questions not related directly to particular treatments
was on March 12. The doctor we spoke to (Phyllis, who was the
alternate for the health care proxy, and her husband were
there, too) definitely told us it was uterine cancer. I have
checked with Phyllis, and she remembers it that way, too. He also
said that the chemotherapists had agreed that there was no
benefit to further chemotherapy. So I didn’t press him for a
stage or anything, because it didn’t seem likely that there
was any treatment to consider. His prognosis, which was that
she had a small number of months, did turn out to be correct.

Here’s something that’s different from the TV shows — when I
actually started seeing pieces of paper with the diagnosis on
it, it was always ovarian cancer. There was an application
the Rehab hospital filled out for MassHealth (her insurance
was hitting limits on numbers of days in various kinds of
care, after only three months of this), and the admission to
the hospice, and finally the death certificate, and they all
said ovarian cancer. So I assume the doctor just had it wrong
(he was a respiratory specialist, because at that point the
major aim of her treatment was to wean her off the ventilator
she’d been on since the surgery). I can’t imagine why at that
point he’d think there was any point in misleading us. Or
maybe earlier tests had suggested a different primary site for
the cancer, and he hadn’t read all the later material.

When I was talking to people immediately after Bonnie died, I
said I’d like to write something about the experience, and
particularly about the ways in which it wasn’t our health care
system’s finest hour. One of the things the social worker at
the hospice suggested was that I might want to get a copy of
the medical record to do that with. It probably would have
been a good idea, and certainly might have shed some light on
this particular conundrum. But I haven’t done it.

Primary Care Providers and the death of Bonnie Rogers

This is part of my series of posts about the death of my
friend Bonnie
Rogers.

As I reported in the post Timeline of
Bonnie’s death
, she was having unusual problems with lack
of energy for a couple of months, and serious problems breathing
for a couple of weeks before she managed to call her doctor and
make an appointment.

I had urged her to talk to the doctor as soon as she told me
about the breathing problems. I didn’t feel vindicated by her
doctor’s response, which was in fact a complete misdiagnosis,
and not at all what they do on doctor shows on TV (except occasionally
House).

She wrote me:

The doctor says I have mild anemia and should take an iron supplement,
but she has ordered some kind of test for pulmonary hypertension as
well as a colonoscopy some time in the near future. Pulmonary
hypertension is relatively rare, but from the descriptions on the
internet it makes sense that it might be the underlying problem. I
don’t remember what the name of the test is.

Please avoid mentioning pulmonary hypertension [to the group]. … I’d like to avoid it at least until I
really know what’s going on. I’m going to try to just speak
nonchalantly about anemia if the subject of my health comes up.

I was quite sure that Bonnie’s breathing problems weren’t “mild
anemia”, and in any case even mild anemia in a post-menopausal
woman usually points to something else wrong. (That doctors accept it in
menstruating women is a problem, but that’s another post.)

But the doctor had never seen Bonnie before, and she was obese
enough that it wouldn’t surprise someone who didn’t know her that
she should get out of breath easily. Those of us who knew how
seldom she complained about anything, and how active she managed
to be even with major disabilities, knew that her complaining
about being out of breath meant that something serious was wrong.

I like to think that my own doctor, whom I’ve been seeing since
1995, knows how seriously to take my complaints, but she might
well do only the minimum testing on someone she didn’t know with
an obvious diagnosis of obesity compounded with anemia, too.

But to continue Bonnie’s story, when she went to the emergency
room the next day, she was admitted to the hospital with a
diagnosis of blood clots in the lungs. The testing in the
hospital lead to a diagnosis of cancer in the abdominal cavity.
When they released her, they made appointments with both the
primary care physician (PCP) and an oncologist, neither of which was she
able to keep because she needed to go back into the hospital.

After I got the power of attorney and started getting Bonnie’s
mail forwarded to me, I got several notices of appointments, and
postcards saying to call for checkups, even after she had died.
So the record system leaves something to be desired.

This is a clear case of a managed care system not managing a
serious illness very well. I personally have always used managed
care when it was available to me, and I think it works very well
if you do some of the managing yourself. As I said, I’ve kept the
same doctor (actually a nurse practitioner) for well over a
decade, and when something serious happens that she isn’t involved
in, she seems to get records and ask me questions about what she
wants to know that isn’t in the record.

Bonnie had had to switch
plans in the year previous to this story because of going on
medicare, and had not been especially aggressive about getting an
introductory appointment with her new doctor. I’d say one of the
morals of Bonnie’s story is that this was a mistake, and she
should have tried to establish an ongoing relationship with a
primary care provider. Then she would have felt better about
making the appointment when she first noticed problems, and maybe
the doctor would have known to take her complaints more
seriously.

I should add that the obesity probably contributed to this part
of the problem, too. When Bonnie saw a new doctor, she was
usually given some fairly routine advice about weight loss, which
she had of course heard and thought about many times before, and
usually didn’t find she could communicate her disagreement with
its application to
her own case very well in that context. So she didn’t look
forward to the initial encounter with a PCP.

http://rcm.amazon.com/e/cm?t=laymusicorg-20&o=1&p=8&l=as1&asins=B0024FAD8I&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr

Timeline of Bonnie’s death

One of the things I mean to do at some point during this year
of blogging every day is write a series of posts about what it was
like when a close friend suddenly became ill and died, and I ended
up with her health care proxy, power of attorney, and being the
executrix of her will. I felt unprepared for all these roles, and
maybe writing about how I did them will help someone else who has
to do it.

I’ve mentioned this in a couple of posts, but not started
organizing it in any way. So I thought the first step might be to
write about the timeline in which things happened.

October, 2007
Bonnie mentions that she’s sleeping about 14 hours a
day. I didn’t think anything about this until much later, but
if anyone else ever tells me something like that, I’ll remember
that it was the first sign that something was really wrong with
Bonnie.
November 11, 2007
Bonnie tells me that she’s having trouble breathing, as in
getting out of breath when she walks across a room. I urge her
to go to the doctor and have it checked out.
December 2, 2007
Bonnie arrives at rehearsal at my place, and sits on the top
of the front steps for a while to recover before going up the
flight of stairs to my apartment. If she had been a child, I
would have called an ambulance for her right then, but she not
only rehearsed, but went on to another meeting after the
rehearsal.
December 3, 2007
Bonnie has appointment with doctor, who suspects pulmonary
hypertension and schedules tests for a couple of weeks
later.
December 4, 2007
Bonnie fails to make a rehearsal (very unusual), and at
about midnight calls to say that she fainted in the bathroom,
has called the ambulance, and can I take care of her cats the
next day. She ends the conversation by saying, “If you don’t
hear from me, assume the worst.”
December 5, 2007
What I actually did this day is probably a full post, but
Bonnie called me very early in the morning saying that she was
at the Salem Hospital, had been diagnosed with blood clots in
the lungs, and could I get the cats taken care of and bring her
some stuff from her house.
December 28, 2007
Bonnie released from hospital, with a prescription for a
blood thinner and appointments with oncologists.
January 5, 2008
I had total hip replacement surgery on January 4, and Bonnie
visited me in the hospital on January 5. This is the last time
I saw her when she wasn’t in a hospital. I was getting a blood
transfusion, so I was probably actually in worse shape than she
was, although that’s debatable. She had stopped at my place and
dealt with the stairs, and then dealt with however many hospital
corriders there were to get to my room, so she looked pretty
tired.
January 7, 2008
This date is approximate; I was in the hospital and not on
email, so I don’t have a good record. But it was certainly
within a day or two. Bonnie was bleeding from the GI tract, so
she took the cats to the vet to be boarded and checked herself
into the Lahey Clinic hospital in Burlington.
Some time between the above and January 23
Bonnie was in the hospital without email, and I hadn’t yet
set up the list for regular updates to her friends, so that’s
why this date is so vague. They decided to treat the blood
clots by installing a filter in a major blood vessel so that
clots that formed in the lower half of her body wouldn’t reach
the heart, lungs, and brain. Almost immediately, the filter
clogged up, so the lower half of her body swelled up and it was
impossible to move her. Essentially she never left her bed
after this.
February 9, 2008
Several really upset phone calls from Bonnie. The medical
thing that happened apparently was that the cancer had eaten a
hole in her intestine and stuff was leaking out into the
abdominal cavity and causing infection. So they weren’t letting
her eat or drink, and she was pretty scared about the dying
thing. It is about this time that she rewrites her will and her
health care proxy and power of attorney, naming me, with Phyllis
as an alternate.
February 15, 2008
They tell Bonnie that she’s about to die, if she doesn’t
have risky surgery to fix her leaky intestine. She asks for the
surgery. This is the last time I talk to her on the phone. She
goes in for the surgery at about 3 PM, and at 10:30 the doctor
calls me to tell me that she came through the surgery, and that
they’ve removed some intestine and fixed the leaks, but that
there’s still a lot of cancer in there.
February 19, 2008
The lawyer and I agree that I should take power of
attorney. Bonnie is under heavy sedation and expected to
continue to be unconscious for at least a couple of weeks.
March 5, 2008
Bonnie seems conscious and may be trying to talk, but is
unsuccessful.
March 12, 2008
Phyllis and her husband and I meet with Bonnie’s doctor, who
tells us that she has a small number of months to live, and will
never be able to live independantly again. She is clearly able
ot understand what people say to her, but not to talk, or to
move her left side. The oncologists do not consider her a
candidate for further chemotherapy, but if the motion problems
are due to cancer in the brain, they might be able to do
radiation.
April 1, 2008
Bonnie bleeding from GI tract, needs transfusions. The
doctors want to know whether they should do an endoscopy or just
stop the blood thinning medication and hope that works.
April 4, 2008
Discussion of hospice care with palliative care doctor and
social worker. Several friends visit and play recorder
ensembles; Bonnie clearly enjoys this. The cats are delivered
to their new permanent home.
April 11, 2008
The Cantabile band meets at Bonnie’s room in the Lahey
Clinic and plays for over an hour. Bonnie is clearly enjoying
it, and asks (by gesture) for more several times. This may be
the last time she is really able to react to a group.
April 15, 2008
Bonnie moves to hospice. We have a conversation with the
hospice social worker about what she expects. She is quite
alert, and writing very clearly.
April 19, 2008
Bonnie is no longer strong enough to write legibly.
May 3, 2008
Group of shape note singers come sing for Bonnie. You can
imagine that she’s enjoying it, but she isn’t really responding
much.
May 9, 2008
The hospice nurse and I agree to discontinue the tube
feeding.
May 18, 2008
Bonnie dies.
May 24, 2008
Funeral

I’ll write another timeline about the executrix and POA stuff.
And of course lots of the above could be expanded. But usually
these posts take me less than an hour, and that was over two hours.