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

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

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

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

Garden, May 31, 2009

Sad news about the Angelica

[replanted angelica]

Sunny and I went to look at the garden after our morning walk,
and the angelica wasn’t there. There was a shallow hole

I looked in the compost bin, and there it was, but all the
flower stalks were broken or smashed. I put it back, and gave
it compost and water, and maybe it will survive, but I would
guess there won’t be flowers this year.

It was looking happy after being transplanted, but of course I
dug it up carefully and took as much of the roots and soil it
was used to as I could. The vandal who put it in the compost
bin didn’t bother with that.

Here’s the email I wrote the condo association:

In the minutes to the last owners’ meeting, I wrote:

Nobody in attendance requested any changes to the existing
plot assignments.

Secretary’s note: this means that the plot formerly assigned
to Mary and Jeff is currently unassigned. I put a couple of
things there last summer when I was cleaning out my deceased
friend’s house and garden, so if you want to put anything
there, feel free, but please ask if you want to take anything

Someone pulled up the angelica plant which I had carefully moved from my
deceased friend’s garden in Salem, and which was about to burst into
bloom, and put it in the compost bin.

I have replaced, it, but the bloom stalks are broken, so I don’t have
much hope for it at all, and none for this year. I am really upset; I
was looking forward to having that plant.

I think it would make sense to assign that plot, so this sort of thing
doesn’t happen in the future. If someone else wants it, I will move
both the angelica and the lavender, which is also about to bloom.
Otherwise, I will take it, and please, nobody else pull anything else

I don’t understand this vandalism. Why would anyone not want a blooming
angelica in their back yard?

[angelica flower stalks]

Upset was actually putting it mildly. I was weeping
hysterically for most of an hour, and I still tear up when I
think of it. Of course, it being a condo problem, I also
started thinking about all the other things I’ve been mad at the
possible suspects about, but I’m trying to control that.

I’d probably be upset anyway, but it being one of the things I
took from Bonnie’s garden makes it worse.
That was something she put a lot of herself into, and I wanted
to save as much of it as I could. Other friends took things
too, so even if the vandals pull up both the angelica and the
lavender (I think the daylilies I put in the front yard are
already gone), there will still be some, but I won’t have


On a more cheerful note, the vandal(s) didn’t pull up the
lavender, which is also about to bloom.

[lavender buds]


The roses are blooming.



The iris and the Siberian Iris are blooming their heads off; I
cut two stem of iris for my tall blue winebottles.

[Siberian iris]

Overall view

You can see from this that the Alliums and the lillies of the
valley are over, but there’s still a brave little pansy. I forgot
to take them, but there are drumstick alliums with buds.


Wendy and Lucy

This was the most upsetting movie I’ve seen in a while. I
remember hearing a story on the radio about the R rating it got
seeming inappropriately “adult”. The story’s point of view was that if kids can
handle sex and violence, they should be able to handle a story
about a car breaking down.

I’ll avoid spoilers, as had the reviews I had read before I saw
the movie, because it would be a different movie if the viewer
knew the ending in advance.

But I think the reviewer who complained about the R rating
may have missed how violent (including a rape scene) the movie really
was. The rape scene is actually quite tame compared with the
scene where Wendy’s taken away to the police station, leaving her
dog (Lucy) in a clearly inappropriate place. This is what leads
to her having to sleep in the woods without the protection of the
dog, and hence to the rape.

So not only did I spend a good deal of time explaining to Sunny that what
happens in the movie isn’t going to happen to us, but I’ve also
been thinking about all the white-collar violence that’s been done
to me that really did hurt more than the couple of minor assaults
I’ve been victim of.

The most recent one was the crabby neighbor who lived next door
to Bonnie, who decided (without having seen the inside of the
house) that the way we were approching cleaning it up for sale was
the wrong thing to do. She interfered several times with the way
we left trash out, and probably reported our “violations” (putting
trash cans out at 6PM instead of waiting until 10) to the town.

I can understand a town needing to have limits on how much
trash can be left on the sidewalk for how long. But in this case,
the reason we had so much trash to leave was that Bonnie had been
too sick to be taking it out every week for quite a long time, so
in my opinion, they could have cut us a little slack.

Luckily, Bonnie turned out to also have some nice neighbors,
who asked what they could do to help, so I asked them if they’d
take the trash out after 10. They were surprised that that was
necessary, since apparently it isn’t a rule that’s enforced unless
someone complains (hence my theory about the crabby neighbor), but
they were very helpful when I assured them it was a real

Anyway, none of this is anything like as bad as losing your dog
because of an encounter with the police, but it really does make
you shake with rage and frustration for at least as long as some
actual violence.

To get back to the movie, it’s very well done, but watch it
when you’re prepared to be upset.

Walk for Hunger Retrospective

This is usually my big performance of the year. I gave the
details in my Cantabile Band
post yesterday. For this one, I thought I’d dredge up
some pictures from previous Walks.

I’m certainly not going to have time to post tomorrow morning.
I may post to the spindle later today, or I may wait until I get
home with a picture and post that.


This was last year. The real performance was when we played
for Bonnie in her hospital room. This one was dampened by both
rain and Bonnie dying; one performer had done dropin rehearsals,
and another performer had another event to go to and dropped in
for the first set but had left before this set. The rain actually
stopped by noon, but I don’t think most of us remember it that
way. We did a lot of trios, some of which we’re repeating this
year; I hope it’s more cheerful to sing about walking over hills
an dales and birds singing.



The year before may have been a high point of some sort. We
did a performance of a lot of the same repertoire at the Boston Recorder
Play the Recorder Day, and really knew things pretty
well. People had learned some things about how to secure music
and stands from the wind the previous year.



2006 was the year we played at the Jeremiah
festival in Vermont, so we put a bunch of shape note
stuff on the program. I think it was an entertaining program if
you liked both listening to music and watching musicians run up
and down the riverbank chasing their music.



2005 was another year it rained, although, again, it really
cleared up pretty well by the time we were playing. But the viol
player didn’t want to get her instrument out, and a less
experienced performer freaked out when I suggested switching some
parts so that I could play bass on the serpent. It wasn’t even
her part I wanted to switch — it was the person she was standing
next to. So now there’s language in the FAQ
about how in a dropin group you have to be prepared to be either
one-on-a-part or not one-on-a-part.



2004 was the year of the best professional coperformers.
It was really hot and two very good recorder players came and
played duets and lots of people stopped to listen to them.



This was a big band performance. I think I made everybody come
to at least one rehearsal, but not necessarily enough rehearsals
for them to have learned the music. And it was a big enough crowd
that it was hard to hear. I think it wasthe year we started having
other groups to help us out, but I got several groups, only some
of whom showed up when and where they were supposed to.



This was a big band where not everybody came to a rehearsal,
and nobody could hear anything from the other end of the group.
It might have been the first year we had the whole day to cover,
and I pretended we could do it with solos, and people had the idea
they should be able to walk to the bathroom (a mile or so away)
between sets. I opened my big mouth at dinner afterwards about
how to run a recorder society, and
that’s how I got stuck doing it for a while.



2001 was the year I founded the Cantabile Renaissance Band.
For two or three years previous to that, I had a fairly good
recorder trio, and we just bought some of the books of recorder
arrangements we knew pretty well and played. I think we were only
covering two hours, and we met regularly anyway without random
people dropping in. The biggest problem I remember was that if
the wind came up and you were facing the wrong direction, the
sound didn’t come out of the tenor recorder. A recorder group
that meets regularly really makes more sense in this context than
the crazy stuff we do now, but I don’t have one of those, and I
don’t know many people who do.

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

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

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

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

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.

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
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
December 3, 2007
Bonnie has appointment with doctor, who suspects pulmonary
hypertension and schedules tests for a couple of weeks
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
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
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
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
May 9, 2008
The hospice nurse and I agree to discontinue the tube
May 18, 2008
Bonnie dies.
May 24, 2008

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.