From Elizabeth:
I just talked to Luce. Maddy is being cremated today, wrapped
lovingly in an extra-luxurious sheet from a friend.
Unfortunately, Emily, her beloved dog, crashed overnight, and her vet
thinks--in a stunning and sad irony--that she has leukemia. Emily
has now gone to join Maddy.
We can all be grateful that Emily hung on until now, as
Maddy many times said she could not bear the thought of
losing her. Maddy never had to face that. For Emily's part
it almost seems that once she sensed Maddy was no longer
here, she left, too.
Elizabeth
I'd like to encourage everybody to go to http://xcski.com/blogs/memorial and contribute your favourite Maddy memories and pictures. Instructions for how to do so are the first (bottom) entry.
A few moments before the end, we were all sitting around in Madeleine's room, arrayed on chairs and a cot around her bed. Luce, Jean, and Marla were talking about wilderness retreats up in Canada.
Madeleine's breath had been getting shallower and quieter for some time, and one by one we were beginning to pay closer attention to that when there was a pause. We gathered more closely around --- Jean and Luce holding her hands, Marla and I stroking her head --- and she took another breath. Jean told her that her soul was going to soar, and I just kept telling her quietly that it was okay for her to let go, that it was okay for her to rest, that it was going to be all right. She took two, maybe three more irregular breaths, and then she was still, at a few minutes before eleven, with all of us holding her and wishing her well.
She left very quietly, very peacefully. We'd all been prepared for something physically wrenching, but there was none of that. Just a winding down, with enough notice that we were all able to give her attention and comfort as the end came.
We'd called for a doctor in the early moments, when we weren't sure what was going on, but the resident who came was very deferential and non-intrusive. About ten minutes after Madeleine drifted off, she checked for a heartbeat, found none, and left us alone with her again. Two more hospital staff (nurses? aides?) came by a while later to answer questions and offer help, but again they weren't pushy at all. Because of the disease and the chemo it wasn't possible for her to donate her organs, so there was no need to whisk her away.
We had plenty of time to cry and say our goodbyes and put things in order. Madeleine looked very much at rest --- skin smooth and soft and unlined, body in a position of repose. After she was gone, I told her she was beautiful, and told her it was going to be okay, and wished her lullabye and goodnight.
We packed up all our stuff and hers, and were out of the room by quarter to one or a little earlier. The cremation will be sometime soon, and I know Luce has said she intends to be there.
There's plenty more stuff to say, and questions to answer, and individual emails to respond to, but I'm going to go off to bed. I'm at Madeleine's house now, sitting at her dining room table, with classical music on the stereo, cats wafting through the room, and boxes and tins and jars of English food festooned liberally around. Tomorrow I'll co-ordinate a few things with Jean, check in again if necessary, and head home to Brooklyn.
Luce Nadeau and Jean Ogilve are deeply saddened to pass on the news that Dr. Madeleine Judith Cecelia Page passed away just before eleven pm, Monday, December 15, 2003. As you all know, Maddy chose to roll the dice and take the slim odds offered by aggressive chemo to return her to a productive life. She never wavered in her commitment to live, and never gave in. The complications that arose from the toll that chemo took on her body were eventually too harsh to stand.
Madeleine said she was afraid a few weeks ago. When asked what she was most afraid of, she said there were two things --- dying alone and leaving a mess. It was not dying itself that frightened her. She died surrounded by loving friends, and we told Maddy that from our experience of knowing her for more than 20 years, her messes are sometimes far less dramatic than they feel subjectively, which seemed to give her some comfort. As well, a number of initiatives she had initiated, including renewing her Canadian passport and getting her insurance sorted out had come to fruition, so her worries began to fall away.
Maddy has many times mentioned that the upside of this experience has been the outpouring of generosity, kindness, and attention that she has received from her friends. The magnitude and depth of love that came in her direction moved her to the core. She tended to keep her friends segregated by groups --- the electronic community, lists, dog-walkers, a few old friends, Widener, the therapeutic community, neighbors, etc. and many of us had not met one another. As we have come to meet each other over the last few months and share stories about our love for her we are experiencing a virtual community with her at the centre. When she spoke about this to a few of us recently, she said she was "overwhelmed" with this outpouring, and truly got from this that she was a deeply lovable human being --- something that had always been a struggle for her to believe.
She spent the last few days in a quiet room in Jefferson, with no medical interventions, the radio softly on her favorite classical station and with friends reading to her. Her friends were with her, many calling to talk to her. It could not have been more peaceful.
We are in conversation about how to celebrate her life, and allow us the opportunity to come together. We will keep you posted on this on the blog, but are tentatively looking at something in Philly January 10, and something in Canada in August where she has requested her ashes be buried in one of her favourite places in the beautiful boreal forest of Pontiac County, Quebec.
It has been such a gift to have known Maddy, and to have had the opportunity to be part of this amazing community.
With love, Jean Ogilve and Luce Nadeau.
From Angus:
No real news right now. She's calm, and quiet, but there's not much
change. We've just had dinner, and we're having some wine, and she's
at the center of it all.
We've been trying (not always with a lot of success) to keep off the
line, but I will try to keep updating every few hours --- say about
every three.
(I've now maddied one post to this list today, and anti-maddied
another. Clearly her spirit is still strong.)
--Angus
From Angus:
Not much to report right now.
Madeleine's breathing is a bit more labored, but there's no dramatic
change. We're still reading to her, soothing her, passing along
messages. Folks have been calling, and are welcome to keep doing so.
We'll pass along word when there's more news.
--Angus
From Angus:
Hi all.
As Kim said, we seem to be getting closer to the end.
We've read out the roll-call to Madeleine again, trading off. I think
we caught all the typos, but I repeated the alterations and
additions, just to be sure. We'll be reading it through another time,
at any rate. We're midway through a second read of Wake, but mostly
just chatting and murmuring and fielding calls and notes.
Jean brought us back a lovely picnic lunch from wholefoods a little
while ago, so Kim and Luce and Jean and I have all eaten well, and
the room smells wonderful and fragrant. Madeleine's resting
peacefully, and doesn't seem to be in any pain.
Thanks, everyone, for your thoughts --- by email, by phone, or just
through the ether. In a lot of ways, I'm pretty sure that it's harder
to not be here than to be here.
Take care,
Angus
From Kim Scheinberg:
I'm here with Jean, Luce, and Angus.
If anyone would like a chance to say anything to Maddy,
you should call today.
Angus or myself would be happy to speak to you, as well
as willing to hold the phone to Maddy's ear.
Maddy's comfort level is the same, but her condition
is worsening.
Rest assured, one of us is always holding her hand.
The number to call:
phone # 215 955 3461
-k.
From Angus:
We've all been resting the last few hours, it's morning now. They
increased Madeleine's pain meds a little overnight, and gave her
something to bring her fever down. Her temp is lower, and she
definitely seems more comfortable --- her breathing's less ragged,
and her muscles are less tense.
I checked email and read her the latest round of messages when we all
got up an hour or so ago, and then re-read some of the earlier ones.
I'll start in on the Finnegans Wake from the top in a bit. Right now,
there's a relaxed, mellow energy in the room --- Luce and Jean and I
have been sitting around, drinking coffee and eating yogurt, trading
stories and memories.
--Angus
From Angus Johnston:
Here's another update for insomniacs and folks on other sides of the world.
Marla went home a while ago, and Luce and Jean are sleeping right
now. I read Madeleine the last big chunk of the Finnegans Wake
chapter about an hour ago, and her eyes opened wide for the first few
minutes, then closed more fully than I'd seen them do for some time.
I noticed that Luce was snoring at about that time, so I think I may
have put them both to sleep. Not a bad thing, considering.
One thing I left out of the last note is the physical comfort we've
all been trying to give Madeleine --- holding her hand, and mopping
her brow, stroking her hair and her cheek. The last while we've had
the lights dim, and I've just been sitting quietly reading old emails
to myself and holding her hand.
I've read her all the messages that had come in for passing along the
last time I signed on. Harry, I also read her an abridged version of
your recent note to the list --- leaving in the thanking her for
being there for you part, leaving out the feeling bad about not being
able to be there for her. I've tried to do something similar for
everyone who's written saying they didn't know what to say.
Luce and Jean and Marla have made it very clear how important to
Madeleine the recent outpouring of love and support has been, and how
sustaining. She's carrying that with her now.
--Angus
From Angus Johnston:
Hello, all.
I'm here in Madeleine's room now. The drive down wasn't too bad, once
I got out of the city. Rain but not snow most of the way. One road I
needed had just been closed by the cops, which cost me half an hour,
but I got here.
Luce, Jean, and Marla were here when I got here, and still are. Sasha
has been here and gone since I arrived.
Madeleine's breathing is labored, and she's only minimally
responsive, but she's still here. I've read her all of the messages
that came before I left New York --- twice so far --- along with
eight pages of Finnegans Wake, and a couple of things I brought.
(Phil (G), I printed out a few selected ~M/~~M posts, and have read
her those too. And we've been talking with her, and about her.
She's doing okay. Luce says my reading makes her less twitchy, but I
can't tell. I've downloaded all the messages that have come in since
I left, and I'll be reading those next, along with a couple more
~M-ish things like Misha's recent update.
Took me a while to figure out how to get online using the room phone,
but I've managed it. I won't check in too often, and I'm still not
sure what my plan for the night is, but I'm here.
Elizabeth, if you could send me the list of names you compiled, I can
read that to her again.
Becca, thanks for the offer of a room, but I don't think I'll be
schlepping out there tonight --- Marla's offered me a room at her
place, and I may just stay here at the hospital anyway.
I'll report in the morning, at the latest.
--Angus
I just talked to Luce in Maddy's room. Maddy continues
to be stable, and she is comfortable, though her breathing has
slowed just a little.
At the suggestion of several people, I compiled a list of
about 100 names that are subscribed to the various lists,
as well as those others who have posted comments to her
blog page.
Luce put the phone to Maddy's ear, and I read each name
to her, speaking slowly and enunciating clearly. I
stopped after each 15 or so names and assured her all
of those people love her and are sending their supportive
thoughts and prayers. Then I would read another group,
with the same assurances.
When Luce came back on the phone, she said, simply, "For the first
time, Maddy cried."
Maddy also blinked her eyes while I was talking, just as she did
yesterday.
All of us--Luce, another visitor to Maddy's room, and me--found
her reaction emotionally overwhelming. Maddy not only heard
all of our names, she comprehended what she was hearing,
and she was obviously moved by it.
This is one of the most touching things I have ever participated in.
I'll post again tomorrow, and sooner if there is any change.
Elizabeth
I just talked to Luce, who has spent the last 20 hours at
Maddy's bedside.
Maddy remains in stable, but very critical, condition. She
is being kept comfortable.
Maddy can hear, though the doctors are not sure how much, if
anything, she can comprehend. When Luce, at my request, put the phone
by Maddy's ear, I told her we all--everyone on all the lists and
all those who keep in touch through her blog page--are
thinking of her, that we love her, and that we all feel fortunate our
lives have crossed hers. Luce said her eyes fluttered while I was
talking, so we can hope she may have understood some of my words.
Luce said Maddy has told her several times over the past
months that the silver lining to her illness has been the
overwhelming outpouring of generosity, kindness and
attention we have lavished upon her. Maddy described herself
as flabbergasted by and so grateful for our efforts.
Instead of posting every day, I will wait until there is some change to
report before sending another update.
Elizabeth
Following a tip from Edward Rice, I checked with Patient Information at
the hospital. They show Maddy in a regular room, not in the ICU.
But this is not good news.
I've also just talked to Jean. By consensus, no exotic, extraordinary
measures (such aqs a shunt between her brain and abdomen) will be
performed on Maddy.
She is breathing on her own, but she is deeply unconscious. From brain
swelling twice in one week, she has permanent physical neurological
damage (her left side was impaired even before the second swelling).
The extent of damage to her cognitive functions is unknown, but some
damage is inevitable.
Luce, Hilary, Sacha, Larry, and Marla are all with her, and Jean will
return to Philadelphia tomorrow.
I'll post again whenever I receive more information.
Elizabeth
Maddy did make it out of the ICU either yesterday
morning or the afternoon before, but about 4 PM
yesterday afternoon, she began having respiratory
problems badly enough to be taken back to the
ICU.
Also, she has blood pooling in her brain. She is
unconscious, completely unresponsive.
Luce is in Philadelphia.
I expect to hear from from Jean or Luce tonight,
and I'll post as soon as I do.
Our friend could use whatever supportive
thoughts and prayers you have for her.
Elizabeth
From Elizabeth:
I just talked with Jean, who reports that Maddy is doing
better and better! She's very stable, is more and more
conscious, and they will transfer her out of the ICU and
into a "normal" room as soon as they have a single room
available.
They have removed her chest port and her brain drain.
They don't normally remove the brain port--apparently
that's a complicated enough procedure that it's just
easier to leave it in permanently--but they may be
taking hers out if it proves to be a source of infection.
Maddy will probably not be able to talk on the phone for
a few days since saying even a few words exhausts her,
but Jean will continue giving me daily updates.
Also, on their way to her, are some nice warm scarves
and turbans and sleeping caps to warm and protect her
dear bald head.
Elizabeth
From Elizabeth:
Not much to report. Jean went back to Canada, so we
have no source of information at the moment, other than
no news is good news.
I just tried Patient Information at the hospital, and
Maddy is still in intensive care, as was expected. My
understanding is that they will keep her there until
the latest hole in her skull stops draining, which is
expected to take another day or two.
I'm hopeful that by the end of this week, I'll be able
to once again get updates from The Ribena Kid herself.
Elizabeth
From Elizabeth:
Maddy continues to do well, all things considered. I didn't talk
directly to her, since she's still in the ICU, but Jean brought me
up-to-date.
She is briefly conscious, off and on, and is aware and alert. She's "sipping
Ribena like crazy," and talking in small patches before drifting
off again. She can't actually eat much, maybe a spoonful or two
of yogurt, but she says she's hungry, and she asked the nurse for pizza
this morning!
There is an infection in the spinal fluid around the chemo port in her
brain, and the infectious-diseases doc wants to have that port
taken out. He's culturing the fluid to see which specific
antibiotic to use, but in the meantime, she's already getting 5
antibiotics, and one/some of them will be helping combat the
infection.
While Maddy is talking clearly and has control over the left side
of her face, she cannot move her left arm or leg. The theory is
that this is due to the repressurization of her brain, now that
the tube they inserted yesterday is still draining fluid, and that
it will be temporary. She can't receive physio-therapy in the
ICU, but she'll start getting it once they transfer her out in
1-3 days (whenever the newest brain tube stops draining).
Jean mentioned Maddy could use some nice cotton scarves since
one side of her head is now bald after being shaved to insert
the tube. I'll find some pretty ones on the Internet and have
them sent to Becca.
By the way, Maddy is becoming known affectionately as the
British-American Princess, due to all the nice sheets, towels,
foods, etc., we've sent her.
Also, the Maddy Fund is going to be covering some other items
like utilities.
Elizabeth
From Elizabeth
Maddy is doing much better!!
They bored one or more holes in her skull
to alleviate the pressure, and she improved
almost immediately. While not yet fully
conscious, she's more responsive: her eyes
are open, she can squeeze fingers on request,
and she sometimes repeats a word
someone has just said.
The drain(s) will stay in her head for
2-3 days, so she'll probably by in the
ICU for 2-3 days.
Elizabeth
I just talked to Maddy's friend Hilary. Maddy was
somewhat responsive early this morning--that is, she
could squeeze fingers, but not talk--but she is
"totally out of it now."
She is unresponsive now because of brain swelling.
There's enough swelling to twist her brain, so
they are, at this moment, transferring her to the
ICU where they will put a burrhole(s) in her skull
to relieve the pressure on her brain.
When I asked Hilary if there was anything even slightly
encouraging to report, she said in a strong and
optimistic tone, "This may well work."
Let us hope it does.
Elizabeth
From Elizabeth:
I spoke again to Maddy's friend, Jean, who is in Maddy's
room. Maddy's vital signs continue to be very stable,
which is a good sign.
Her lack of responsiveness is apparently typical for this
level of sepsis.
She will probably receive her final chemo dose tomorrow,
then her body can begin to recover from chemo and start
producing its own white cells to fight her infections.
They did not do the bronchoscopy yesterday after all,
because she was not alert enough to participate in it.
One way that we can gauge her condition is by what room
she is in. If she gets better, she will go back to
the area of the hospital where she was until late
yesterday or today. If her condition worsens, she will
go to the ICU. Jean said at one point today, the docs
were on the verge of ordering her to the ICU, but they
then decided she didn't need to go at that point after all.
I'll talk to Jean again about noon, Eastern time, tomorrow, and
I'll post an update afterwards.
Elizabeth
I just got off the phone from talking to Jean, Maddy's friend
from Canada, and Sasha, Maddy's friend who is an oncologist.
Maddy has been moved from her former room to another that is
halfway between the care she was receiving and an ICU. The ratio
of nurses to patients is higher than where she was.
Maddy is septic; she has two different bacterial infections in
her system. Her temperature is around 101 F, and she is
unresponsive enough to be considered unconscious. She may or
may not be moved to the ICU.
In addition to the anti-bacterials she was on, they are now
giving her two new anti-bacterials and a new anti-fungal med.
Sasha reports that this septic condition is frequent in
leukemia patients because their white cells are so few and
for that reason and others, their immune systems are so
compromised. She has one more chemo dose, and then this round
is finished. Left to itself, a body will start to produce
its own healthy white cells a week after chemo ends, but in
Maddy's case they can and will give her growth factor to
hasten the process.
The hope is all the anti-bacterials and anti-fungal meds
will combat the infections for her, and then her own defenses
will start to come into play and finish destroying the
bacteria and fungus.
Sasha also says her blood pressure and heart rate are
well-controlled, and even with the pneumonia, she is not
as "air-hungry" today as she has been.
Jean will be in Philadelphia until Tuesday. We are going
to talk again later today (tentatively around 5 PM,
Eastern time), and I will post an update then.
Elizabeth
From Elizabeth:
I just talked to Maddy very briefly. First time I've been able
to get through since Monday. She is weak and very breathless.
She was able to tell me only that she has finally given
permission for the bronkoscopy, which I believe is scheduled
for this afternoon. She also says she has a "bad" fever.
Her friend, Jean, arrives from Canada today. I'll post
more after I talk to her.
Elizabeth
From Elizabeth:
Again today, for the third day in a row, there has been no
answer in Maddy's room to any of my several calls. I did
check with Patient Information this morning and learned
she is still in her room, so at least she's not back in
the ICU.
I'm very concerned about her, and I'm sure she could use
our thoughts and prayers.
Elizabeth
I called several times throughout the day, but there was no
answer in Maddy's room. I will, of course, try again
tomorrow, and in the meantime, I can only hope she
is holding her own.
Elizabeth
From Elizabeth:
Didn't get to talk to Maddy directly today. When I
called in the morning, there was first no answer, then
on a subsequent try, a nurse answered and said Maddy
was already on the gurney to be taken for a test. She
suggested I try an hour later which I did to no avail.
(Even earlier I had talked to the nurses' station to see
if she needed the Embla numbing cream. This week, it
turns out that the Tuesday procedure, which the cream
helps Maddy tolerate, had been done on Monday, so she
didn't need it today. Tubes of it will arrive from
Canada tomorrow. The nurse I spoke to added his
suggestion that I call her directly later today, since
"she seems kind of low.")
About mid-afternoon, a nurse again answered and with her
help I tried to talk to Maddy, but I could only hear
her breathing.
I asked the nurse if Maddy were doing okay today, and I
was told that she's resting. When I asked if I should
call back later today or wait until tomorrow, she
suggested tomorrow.
In sum, I think it's been a hard day for Maddy.
Elizabeth
Note to Canadians: Maddy needs more Emla cream as
soon as possible. Someone has walked off with the
tube she had, and she had to have 2 ports replaced
today. I cringed as she said she "squeaked and
writhed." Would someone in Canada please get
TWO of these tubes and send them to Becca by
overnight mail, and then tell me the total so I
can reimburse you from the Maddy Fund. If you
are able to do this, please email me, and I will
send you Becca's address if you don't have it.
To add to Maddy's woes today, she's had an awful
headache all day long, and she still has a fever,
though when we spoke in early evening, her time,
it was under 100 F.
Maddy says it's fine with her to refer people who
ask about her to her blog page.
She is not able to read email. "Not right now, I
can't concentrate enough."
Elizabeth
I tried to call Maddy several times today, but no anwer
each time.
Becca and Pam (who has been tending to Maddy's 4-footed
dependents) tried to arrange a reunion this morning
between Maddy and Emily, but the nurses said Maddy was
not up to it today. They added that tomorrow or later
in the week she might be able to go to the parking
lot to see Emily.
Elizabeth
From Elizabeth:
Talked to Maddy only very briefly early this evening. She'd
had several visitors today as part of Becca's after-
Thanksgiving fest. "It was really good to see everyone."
Our conversation was so brief because Maddy was
tired, very short of breath (the shortest I've
heard), and running a fever.
Elizabeth
Maddy went to occupational therapy (I don't know why
they don't call it physical therapy) this morning,
and with their help, she walked about one-fourth
of a block. After three weeks in bed, her muscle
tone is very poor and weak. The exercise went
well, though, and at the end, her oxygen uptake was
100 percent. She'll go back to OT on Monday.
She is feeling "quiet" today and a bit down. She
is scheduled for a transfusion this afternoon
because all her counts have dropped. She says she
always feels tired and has difficulty focusing when
she needs a transfusion.
She's still breathless, but her lungs feel clearer.
They are running so much liquid into her by IV,
"24-7," that her legs are swollen and her toes hurt.
She declares she is "going to put my foot down about
it." (I don't know if the pun was intentional.)
As a Thanksgiving treat, they brought around Krispy Kreme
doughnuts last night, and Maddy had her first one
ever. She said it lived up to its billing as a
tasty grease-bomb.
Anthony, she does like ginger marmalade, but has enough
marmalade for the time being. As a suggestion, you might
wait a month or so, then send her some.
Elizabeth
Maddy for breakfast again had warm, buttered toast and
marmalade from her food package. A nice start to
her day.
She's better today. Her chest no longer hurts when
she breathes, and she and/or the docs think the
antifungul meds are doing a good job on her pneumonia.
This is excellent news.
The hospital is planning a special turkey dinner,
of course, but Maddy reports she's sick of turkey.
"They serve in it one form or another almost every
day. I swear they have shares in a turkey farm."
I read her Harry's blog about his kitchen and
molten aluminum. It amused and entertained her.
Elizabeth
I finally reached Maddy at 7:30 pm, her time, after trying
frequently since noon, her time (she doesn't like to talk before
noon, so that's my starting time). She had slept for almost
24 hours, and was thinking it was 7:30 am, not pm. She's been
on double oxygen, and she reports it gives her a deep sleep.
One of the reasons she is on double oxygen is that the
leukemia may have spread to her lungs. She refused today
to let them do a bronkoscopy, and she assured me that was not a
bad decision, medically, that the doctors had been unable to
explain clearly why they wanted to do it or why it even
should be done. She said telling them "No" was empowering,
it "makes you feel kick-ass!"
She had an EEG yesterday, but I'm not sure what the results
were. She reports the tremors were significantly less
today.
Twice today they tried to get her to the gym, but there
was a lack of coordination each time. There were no
wheelchairs with oxygen available.
Maddy thinks the idea of visitors on Saturday holding up
signs outside her window is "cute!" and "it would make
me grin." She is on the third floor, and she does
have a window.
It's looking more likely that she will be up to seeing
people on Saturday. She had the No Visitors sign removed
from her door yesterday.
For those who visit her on Saturday, in addition to the
phone-dialer device, would you bring her a pair of
scissors suitable for opening packages and envelopes?
Finally, Maddy likes the idea of the Maddy Fund buying gifts
for various people.
Elizabeth
From Elizabeth:
I just had a nice chat with Maddy. She reports that she
slept "okay" and feels "okay." I'm assuming okay means
adequate, but not great. Anyway, she sounds good today,
upbeat and strong, except for the breathlessness from her
pneumonia.
She had a visit this morning from some respiratory experts
and is expecting to see more of them this afternoon.
She said these are the people who specialize in hard-to-
treat pneumonias. She added she feels like they have
already thrown every antibiotic in the book at her.
She doesn't sound to me as though her breathlessness
is increasing day by day, but she says it does hurt a little
to breath.
The occupational therapist(s) had been in to see her
this morning, and they are going to take her to the gym
in the hospital tomorrow and work on getting her walking
again.
Maddy says her tremors (which are a chemo side-effect,
not from any IVs she had in the ICU) are getting worse.
Fortunately, they affect "only" her arms and hands,
not her legs, so she will be able to walk in the gym.
Paul, she has not yet had a chance to use the earbuds
I sent to see if they are satisfactory, but she
appreciates your offering another pair.
Maddy started today by having 4 slices of toast with
one of her nurses. Together they went through at least
a third of a jar of Irish whiskey marmalade from her
Britfoods package.
Speaking of which, the Ribena drink in that package
is the only thing that helps her swallow some of the
huge foul-tasting antibiotics, so I ordered several
more individual-serving cartons for her yesterday,
along with more digestive biscuits and some Earl
Grey and lapsang souchong tea. If you've never had
the latter tea, it's very strong and smokey. Many
people don't care for it, but Maddy and I think it's
wonderful.
This latest food package should reach Becca's ofice
tomorrow (Wednesday).
Would someone who is going to Becca's after-
Thanksgiving bash bring a phone dialer for Maddy?
She needs something like a stylus that comes to a
fine but strong point. Her hand tremors make it
impossible for her to dial the cellphone with
her fingers.
Finally, I'd like to echo Becca's request for
those who visit her to see if they can rearrange her
room. She reports there is hardly space to turn
around in.
Elizabeth
From Elizabeth:
I talked to Maddy very briefly today, before she fell
asleep from Benedryl. She enjoyed her visit with Becca.
In a worrisome development, she reported they now think
her pneumonia is fungal, after all. They will be
doing a bronkoscopy, though she didn't know when.
Elizabeth
From Elizabeth:
Maddy had a good night with a Benedryl-induced sleep. Also, she
feels less foggy -- "less like I'm stranded on an island in the
middle of my brain."
According to the doctors, she looks too healthy and has too
much perkiness for her pneumonia to be the life-threatening
fungal kind. Good news there.
According to her oncologist, she's "doing well."
Jason, Maddy wants you to know she is finally going bald.
And Paul, Maddy greatly appreciates your work with her blog and
your sending her the anesthetic mouthwash.
I've purchased a digital clock for her from the Maddy Fund. Its
display is about 10 inches wide, not only time, but date and day
of the week. I'm hoping this will help counteract the "ICU
psychosis."
Her tremors make it difficult for her to drink without
simultaneously giving herself a bath. Maddy says if she had the
cheekbones, she'd remind people of Katherine Hepburn.
The composite birthday card done by Harry is a big hit. She wants
to get it framed.
She had a horrible encounter last night with a dreadful CAT-scan
technician. She explained when she arrived there that she was
nauseous, to the point where she had a bucket with her to throw up
in. This clod sat by her eating a huge sandwich and burping.
While positioning her for the scan, he could not get the footplate
to lock in place. He kept shoving it toward her, hitting her leg
and hurting her. She told him to stop huring her like that, she
cried "Ouch!" each time he did it. He got angry and shouted at
her that it was her fault. The fourth time he banged the plate
into her leg, she hit him.
The miserable bully was stunned at one of his victims fighting
back. Maddy expects him to file a complaint against her, and she's
going to do the same for him.
Elizabeth
Had a nice, long chat with Maddy this afternoon (early evening, her
time). She slept well, but has developed pneumonia, though I gather
it's more of the limited, not raging, type. She sounded a little
breathless from the infection, but not weak. She's scheduled for
a CAT-scan sometime tonight ("Probably 3 am, if past experience is
any guide") to ascertain the extent of it.
Maddy has difficulty in swallowing the various antibiotics she's on, so
I'm going to send her more blackcurrant juice to help. She also asked
for more digestive biscuits and some flavored teas in bags; coping with
loose tea would be too awkward. I'll send those as well, but if
anyone else wants to bring some to her, please feel free.
She thinks there is no chance she will be able to get to Becca's, but
as of now, she may be up to having visitors again in a few days.
She's had transfusions yesterday and today. They always make her feel
better afterwards and give a bit of an energy boost.
Maddy loved her birthday cake, to the point she overdid it a bit with
the rich buttercream frosting. As she said, though, "It was worth it."
The dieticians count every calorie she eats, and they're constantly
urging more food upon her.
She thinks she is having hallucinations again, this time just visual,
not the auditory and visual ones she had with septicemia (and which,
fortunately, drove her back to the hospital just in time -- Maddy is
convinced if she had waited even slightly longer to get to the
hospital, she would not have made it through that crisis). She
explained that there is something called "ICU psychosis," whereby
patients lose track of time and days from the disorienting
hospital environment. Maddy believes this is the source of her
hallucinations.
She wants whomever might visit to know in advance that she has almost
constant tremors, possibly from the dopamine(?) IV they gave her in the
ICU. She hopes this won't scare people.
Also, she doesn't have enough energy to even walk across ths room, nor
do the doctors want her to -- too much risk she might fall and start
bleeding.
Maddy again mentioned that she can see herself on her next
birthday as a healthy person. She added that this is the first
time she has looked forward positively since Sept 29th. She's
clearly getting a feeling of inner strength and resilence back,
and looking beyond her present physical condition. A good
birthday present to herself.
Elizabeth
I just spoke to Maddy, who reports she has had "a really
nice day" and a "good birthday."
She was woken up this morning by all the nurses coming
in with a cake, singing "Happy Birthday." She was able
to return the favor later in the day when her birthday
cake was delivered from a nearby Italian bakery. She
reports it was very good birthday cake, and everyone
enjoyed it.
Emily, she thanks you for the tapes. And she thanks Harry
and everyone for her personalized birthday card.
Her Britfoods package arrived, and when I talked to
her, she already had had several of the blackcurrant
drinks and was looking for a particular chocolate
bar in the box. Good news is that they WILL let her
use the tea kettle in her room, so she can have a
nice cuppa whenever.
I asked about a toaster, but she agreed that might be
pushing it a little. However, there is a toaster
out at the nurses' station, and once Maddy began
telling everyone that her marmalade was coming, people
(I assume the nurses) began arranging to make toast
for her.
She hadn't opened a box from Amazon yet (it's hard to
open boxes when you have no scissors), but she was
delighted to see it addressed to "Madeline Page, old
and cranky patient"!
She continues to spike a fever during the night,
apparently a common side effect of chemo. Despite
that, she slept well last night. She was receiving
a transfusion as I talked to her, and she mentioned
they always give her Benedryl with transfusions.
Benedryl makes her drowsy, so she is sure of another
good night's sleep tonight.
Maddy reports she can easily imagine her next birthday,
as a healthy woman in her own home, drinking fresh-
squeezed orange juice and surrounded by fresh flowers.
I assured her we'd be delighted to shower her with
oranges and flowers next year.
Elizabeth
From Elizabeth:
Maddy says she feel "much better" today, emotionally. I
had not realized she felt so down yesterday. Physically,
she sounded somewhat weak today, and she obviously is, since
she hasn't been strong enough to take a shower for a few
days. Yesterday, she received a "head to toe strip-wash"
and feels much less grubby as a result.
She slept well, but for the last couple of nights, she's
developed a fever spike in the middle of the night.
I received an email today from FedEx reporting that
Maddy's BritFoods care package should reach Becca's
tomorrow (Friday). I reported that to Maddy, adding
"It's full of goodies." She said, "It's full of my
childhood, and I need that at this point."
She thinks she has 20 more days of chemo on this round,
and is sure she'll be in the hospital at least that
long.
As we were hanging up, she reported, "They've come to
inject poison into my brain." It takes a special type
of courage to say something like so matter-of-factly.
Elizabeth
From Elizabeth:
Talked to Maddy earlier today. We had a nice chat. Not
much new to report. She slept "like a top" last night,
which is good to hear. Her voice sounded stronger today
than yesterday.
She has finally started losing hair from chemo, a
development her oncologist expected before now.
Owen, she thanks you again for the numbing cream. They
stick an inch-long needle into her every Tuesday, and
she says "the cream makes Tuesday bearable." She has
plenty on hand now, and will let me know when the supply
gets to about half a tube.
Maddy sends her love to everyone.
Elizabeth
From Elizabeth:
I talked to Maddy an hour ago. She got a very good night's
sleep last night, so that is a step in the right direction.
However, she's developed an unpleasant digestive upset
that will probably take a while to cure. Because of it, she
asks that no one visit for the next several days.
I'm afraid this will postpone her meeting with Emily, and I know
she's disappointed about that. She had been keenly looking
forward to seeing her again.
Even though her appetite remains good, the dieticians are
fussing that she's not eating enough. That may well change
once the Britfoods box arrives. The store had everything I
ordered in stock, and the box was shipped today by FedEx.
I don't yet have a tracking number, but I'm expecting it to
arrive at Becca's on Thursday. It's chock-full of tasty
treats.
I mentioned the question of loose tea, but Maddy is not sure
they will allow her to use the tea kettle .I ordered, so
that matter is up in the air at the moment.
VoiceStream (T*Mobile) won't let me use a credit card
over the phone to add dollars to her account. I need to do this
in person at an authorized store or dealer. I think I can take
care of this tomorrow.
Amazon reports that the Kensington laptop security cable should
reach Becca tomorrow.
Maddy says she may not be able to attend Becca's post-
Thanksgiving bash. She also is not sure she will be up to
having anyone who does attend come to the hospital for a
visit. But if she is up to hospital visitors then, she asks that
no one bring their children. She explains that her room is
simply not a good environment for a child.
I ordered some pairs of reading glasses for her yesterday in
various strengths, along with protective cases for them and
lens cleaners.
This morning I found, after several tries, a nice Italian bakery
that will deliver a cake to her on Friday. I ordered the flavors
Maddy likes (vanilla with white frosting) in a cake large enough
for 20 people. That size should cover at least 2 shifts of
nurses and orderlies, plus whatever doctors wander by. It's
scheduled to be delivered Friday afternoon between 1:30-2:30.
Maddy asked me to extend her apologies over not being able to
have visitors at the moment. I assured her we all understood,
and even if none of us can actually see her, we're nevertheless
mentally and emotionally standing beside her.
She feels very loved. That is, of course, an enormously positive
and important factor for someone whose life has spun so out
of her control in such a short time.
Elizabeth
From Elizabeth:
I just had a nice chat with Maddy. She's still sleeping very
poorly and is quite tired as a result. She doesn't want to
take sleeping pills because that would be simply one more
loss of control.
She sounded moderately strong today. She has times--from a
few minutes to longer--when "my brain goes away." Because
of that she hasn't been able to log on or use her cellphone.
Occasionally she doesn't answer her phone for the same reason.
With all the chemicals running through her system, it's
remarkable she is doing as well as she is.
For the same "foggy" reason, she sometimes doesn't feel like
having visitors. Becca, she especially apologized for not being
up to seeing you a couple of times, and she very much appreciates
your stopping by.
She asked how many people have RSVPed for Becca's Thanksgiving
get-together.
Maddy is currently getting chemo every day, but she hasn't
had nausea for several days (HOORAY!), and has not yet lost
any hair, to her oncologist's surprise. Also, she reported with
glee that she is not scheduled for any type of transfusion today.
She saw her first hospital bill today. The only item she specifically
mentioned was more than $3,000 just to insert the brain shunt.
For such a comparatively short procedure, that does seem a
tad high. I asked about her insurance, and she said it was covering
all this nicely.
Alice, she particularly wanted me to thank you again for your
knitting, and she apologizes for not being able to send you
email.
Another piece of very good news is that Maddy is "eating like a
horse." While we talked I scrolled through the website for
Goodwoods British Market. I ordered anything she said she liked,
and it turned out to be a very large order indeed. I also
called customer service and asked them to send today what they
could and ship the rest later. I explained it was for a hospital
patient, and they were sympathetic and assured me at least
part would go out today.
None of this is to lessen what others might want to send. Will,
she particularly liked the digestive biscuits you sent. The items
she especially is fond of are clotted cream (but it *must* be of
the pasturized variety), mini battenburgs, dark chocolates, and
blackcurrant anything. I've sent at least one of each of these
treats, but I'm sure she'd appreciate more.
The only thing she asked for that I couldn't send is
crumpets. Goodwoods carries only frozen crumpets, and there is a
5-lb minimum on frozen shipments. Are crumpets always served
toasted? If so, maybe we should send her a little toaster.
I did send her a nice, automatic-shutoff tea kettle for heating
tea water. Also included were a pretty tea cup for one, and some PG
Tips and Tetley tea bags. Those teas are not flavored. I think
Maddy likes some flavored (Earl Grey?), but we didn't get around
to discussing that. I'll ask tomorrow.
Maddy has lost her glasses and can't read her Palm Pilot. I said
I'd send her some reading glasses. When I asked what strength,
she said, "Double." Does anyone know the numerical value of that?
Reading glasses come in 1.5, 1.75, 2, 2.25, etc. Is double 2.0,
or would that be too logical?
She also asked that the Maddy Fund add minutes to her cell phone,
which I'll do this afternoon.
Maddy is awed and moved by the fact that the Maddy Fund is
currently over $3,000.
She asked me to give everyone her love and appreciation, and to say
she's sorry she isn't able to log on and send email herself.
Elizabeth
From Elizabeth:
I've been trying all day to call Maddy, but there has been
no answer. Since she was so tired yesterday, I think she
may have unplugged the phone. I know she's still in her
room, though, and not in ICU because I just checked with
patient information to confirm her room number (that being
the *only* information they will give out on a patient).
Elizabeth
From Elizabeth:
I talked to Maddy this afternoon. She got little or no sleep last night and was feeling very tired. Plus, "my brain has gone away again."
On the good side, she did not sound down or weak. And she had a nice visit from her friend Bob.
Her oncologist has given her permission for Maddy to go to the parking lot to see Emily, as long as Maddy wears a mask. This means a great deal to Maddy, and I'm working to try to bring it about.
She is also looking forward to sharing her birthday cake with the nurses. She volunteered she is collecting their names (I guess to go on the frosting).
Because Maddy was so tired, our conversation was short.
Meanwhile, two different styles of earbuds are on their way to her, as is the Kensington security cable for her laptop. I'm a bit concerned about the nice radio PhilG sent her. Maddy puts it away in a drawer whenever she leaves her room, but the drawer doesn't have a lock. I'll ask her if a cable can go through the drawer handle.
Elizabeth
From Elizabeth Garner:
Maddy feels "wonderful"! She's had 12 hours without nausea, and
feels like she has "my brain back." She had the first round of the
new chemo yesterday and as part of that, they're hydrating her
"massively." She sounds very good: much stronger, alert and
involved.
We discussed several things. Sean's idea of the Kinsington cable
is an excellent one, and I'll order it for her. She asked that
I find the smallest earbuds; anything with ear "cups" or a neckband
would not be easy to lie on a pillow with.
We're working on an Emily-Maddy reunion in the parking lot.
Her oncologist is a dog person, and Maddy is going to ask her
about temporary 15-minute discharges. We'll also see if we
can do this when the nurses change shifts so we can pay one
of them for 30 or 60 minutes of overtime to accompany Maddy
downstairs.
Maddy has discovered a craving for the marmalade of her youth:
Chivers Golden Shred, so I'm going to order some for her.
A nurse showed up while we were talking to drain some more of
her blood. Maddy has been stuck so many times she feels
"like an inside-out porcupine."
For her birthday next Friday, I asked if she'd like to have a cake
delivered, not only for her but also for her nurses. She loves
the idea, so I'll set that up and get a large enough one to cover
at least 2 shifts for the nurses and orderlies.
Lastly, she thinks Dr. John Birknes may well be David Hawthorne!
I asked if she wanted that part of her blog taken down,
but she said she has no intention of having anything
neurological done in the future, so he is out of her life,
and she doesn't care who sees it, including him. (Maddy
rocks!)
All in all, this was by far the best talk I've had with
her.
Elizabeth
I just spoke to Maddy. She continues to be down, but her
voice sounded a little stronger than yesterday.
She received the results of the bone-marrow biopsy; the
cancer has gone from 100 percent to 25 percent. While
this sounds like good news to me, she had been hoping it
would be zero, and she is depressed that it isn't.
They are scheduled to start her second round of chemo--
with the stronger stuff--today. This is done in her room,
and she has the numbing cream sent from Canada to help.
I told her Emily is doing well, and that we are working on
an Emily-Maddy visit in the hospital parking lot. I'm
confident that would do wonders for both of them.
Elizabeth
Thanx for the info. I was in her room when Madeleine received a large
package from the [elided] list. Or was that the [elided] list ? She was as
thrilled as her condition enabled her to be and insisted on opening it
herself in spite of feeling weak and nauseated. Struggling with tape and
boxes kept her vertical for several minutes; a position that the oncologist
encourages as much as possible. She was still working at it in between
examinations, procedures and short periods of rest when I left last night.
Good job !
She also reads email whenever she has enough strength and ability to focus.
The support she is getting from everyone is critical to keep her morale up,
especially now that she will be entering a very important (and absolutely
nasty) phase of the treatment. She is currently in the dumpster and
struggling to find any joy at all in life. Having spent the last 5 days in
Philadelphia and 12 hours straight with her yesterday, I can attest to the
fact that she is getting superb care and that the disease as well as the
cure are absolutely horrible. Her life is hell. Hell, she has no life!
She has no privacy, her body is assaulted in violated in ways that are
unimaginable, the cure is pure poison, every shred of autonomy and dignity
is gone and almost everything that gave her pleasure is no longer possible.
You can imagine how much she hates this. It gets worse as she has nothing
to look forward to for months to come. Keep up the email, the jabber, the
cheerfulness and the caring. Even if she doesn't respond, nay, especially
if she doesn't respond! I think it will be vital to her; in the end, the
state of her morale may be what will make the difference. If you wish, you
can share this with all the Maddy supporters and please tell them that
Madeleine is very, very touched by the outporing of love and support she
has gotten. It makes a true difference; after all her friends are about
the only good thing in her life at the moment. Luce
From Eliz:
I spoke to Maddy about an hour ago. She sounds measureably stronger today than she did yesterday, though that could be because she is no longer sedated. She had a CAT scan last night; results to be available in a few days. As she said, "The pathologist here is pretty slow."
On the other hand, the nurses are great. She couldn't be more pleased with them--very professional, very caring.
She feels foggy enough that she hasn't been able to log-on with her laptop, so she asked me to thank Alice for "the wonderful scarf set in the best possible color for me."
She apologizes for not being in touch with people directly.
Maddy is depressed and, like everyone stuck in a hospital for a long time, she feels she has no control over anything in her life--for example, she is woken every morning at 7 by someone who wants her blood.
Plus, some of her systems aren't functioning correctly. Her blood pressure goes too high, then plummets.
I told her the animals are doing fine for the moment, and she approves of and is very grateful to the Maddy Fund for paying Pam for her work.
Elizabeth
From Elizabeth:
I just spoke with Maddy, only a short conversation because she was somewhat sedated (I don't know why), and there was a sort of Shriners' convention going on in her room. She said people were in there at 1:00 this morning, banging on pipes with wrenches to see where a leak was coming from. And all morning, it was nonstop people in and out.
She will receive the results of the bone-marrow biopsy in about a week, a frustrating wait.
Elizabeth
From Elizabeth:
I just spoke to Maddy, who would like everyone to know she is "doing okay," but "feeling pretty punk."
She had the bone marrow biopsy this morning, and it went all right, but they are not able to start the round of the stronger chemo because her blood count is not high enough. She's being transfused with platelets for that, which helps but makes her very thirsty.
Her room is "Grand Central Station," with medical people in and out almost constantly, plus a crew of maintanence workers this morning. She was sorry to miss Becca's visit.
She's very appreciative that everyone is being so kind, and she doesn't like to think she is worrying us. I tried to explain that all we want to do is support her through this however we can.
Elizabeth
From Becca:
I dropped by the hospital on my way to a motion call at court. Maddy is in Room 3218. She's up and about and reportedly doing fairly well -- however, she had just stepped into the shower when I arrived. As relayed by the very nice nurse outside her door, she really wasn't up to rushing her shower or seeing someone.
From Elizabeth Garner:
I just talked to her, and she's "doing way better" than yesterday or the days before. She can sit up by herself today, something she was not able to do yesterday. And she reports that the respiratory & cardiac ICU, where she was, is not nearly as unpleasant as the neurological ICU, where she was before.
Maddy has today and tomorrow "off," then a bone marrow biopsy on Monday and two weeks of nasty chemo (stronger than what she's had up to this point). She finds it helpful to think that no matter how bad the chemo is on her, it's far worse to the cancer cells.
She expects to be in the hospital for the next two weeks of chemo. One drawback to this is the well-known problem of not being able to get a good night's sleep in a hospital or even any decent rest during the day. She estimates that so far today, there have been 17 medical people in her room.
A friend, Luce, is currently visiting from Canada, and Maddy is happy about that.
Elizabeth
Another update, this time from Harry MF Teasley:
Just talked with Maddy. I'm at the airport in Providence, going to Tampa for the weekend, and phoned her at Jefferson.
She's out of the ICU, but it sounds like things weren't all that great there for a while. She got a sort of bacterial infection, a proteus gram-negative infection if I got that right, which likely arose opportunistically since she couldn't keep her meds down at home.
She's weak and tired, and is without her laptop: she said she was fairly delirious when she figured out she needed to go back into the hospital, and left her laptop and cellphone charger at home (but apparently she has the cellphone charger now). Her friends were not able to find her laptop yet. It's got to be somewhere in her house, but she can't figure out where.
She said she was hallucinating while at home, and was delirious for a while, so I'm wondering that the laptop could be, well, anywhere in her house. I wish I could go look for it and get it to her. I'm guessing her friends visiting her right now are probably doing that very thing.
But apparently things are better, she's out of ICU, and in her old room. She sends her love, and tried to apologize for worrying us, which I scolded her for, that she shouldn't worry about us.
H
From Elizabeth Garner:
I just (11:30 am Eastern time) phoned Jefferson Hospital in an effort to talk to Maddy.
She now is in Intensive Care, so there is no way to contact her, nor as Becca has pointed out, will they release any info about her.
ICU is the place she said she never wanted to be in again, and now she's there. Let's all send comforting thoughts/prayers her way.
Elizabeth
Jean Ogilvie put this in a comment, but I'll put it out here to make it more obvious that there is an update:
In talking to Maddy yesterday from hospital, she said that she was ready to put Emily into palliative doggie care - that she recognized that she couldn't cope with her. There is an organization in Philly that we have been in contact with that offers to foster doggies in a palliative state, so I will be working on this over the weekend. She had stopped barfing, but did have an infection which kept her in intensive care for a while. Should be back on 3rd floor today.
I don't know if Maddy is going to have time to update blog herself, so I thought I'd throw this in here for people who aren't getting information directly.
Maddy is having terrible nausea and is "barfing my brains out". She's going to check herself into the hospital through her next round of chemo.
...Paul
Once again, third hand information for those that aren't already getting it from other sources, from Becca:
Maddy's still in ICU, Room 9312. There's no phone in the room and I was told she's not allowed to have her cellphone on. Not being a relative, I couldn't get any more info out of the folks on the phone, and I didn't think I should just drop by on her without some indication that she's up for it. However, Maddy told me before surgery, and Hillary confirmed yesterday, that Hillary would call me if there was anything important to report. I'm assuming no news is good news.
I'll check again tomorrow morning to see if she has been moved back to a regular patient room, and will send out another update.
I know this is Maddy's blog, not mine, but I got asked (indirectly) to post this. Maddy evidently has come through surgery just fine and is awake but groggy.