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
It's been a couple of days of paring down, somehow. Pleasures brief and acute, not sustained or nuanced. Light, light, light.
My bedroom faces south and is painted a curious chalky white, so matte as to be almost textured. It has various odd little chimney and buttresses in it, and they catch the early morning light, which is filtered through my white striped curtains. That light, and the patterns of the various vertical surfaces, is a very real pleasure every day.
Wonderful weather these past two days:people smiling and relaxed, things softened by the mellow sun and the warmth. The slightly hectic coloration of the leaves and the vividness of the fall blue sky all muted by this warm bathe of bronze, fruitful sun. Lovely.
It's been a difficult few days for me -- lots of mild nausea, dizziness, exhaustion. The Daunorubicin builds up in your system and it's hard to stay ahead of hydration and eating. Lost another couple of pounds this week. Plus, my blood counts are way down. Platelets still nice and high, but Hmg very low, and with that goes the tiredness and breathlessness and feelings of hopelessness. Four hours of tranfusion tomorrow should bring me back up to fine gnashing and snarling form again.
The truly delightful oncologette says I've lasted twice as long out of hospital as she expected me to, but insists I go inpatient next week: five day a week very intensive chemo, plus a bone marrow biopsy. I feel both defeated and relieved.
Used the numbing cream today that a Canadian friend sent for me (hi Owen!). Amazing. Simply didn't feel that one inch needle so much as touch me. Couldn't believe it.
EtQ the noble hound is not doing well, alas. She has becme very lame indeed, and I cannot persuade her to sit up at all until mid-afternoon. She pees where she lays (luckily I have several doggie beds which cycle through the wash), and hardly even makes it to her doggie dish to eat. I keep feeling if I could only find my own energy, I could maybe find a way to mobilise her. But it's not looking good, and it's too late in her life to ask anyone else to take responsibility for her.
It's as if, bit by bit, everything gets stripped away.
Went slowly, very slowly, around IKEA last night with a friend, looking at sofas. Nothing too exciting but a real exercise in normal life, and as such a substantial pleasure in itself.
Came home knackered, fed the animals, remade the bed (end of chemo week! clean sheets day! a stepping stone!), replete with new duvet cover, tucked in and slept. For ten glorious hours.
Woke up and first thoughts weren't even about cancer but about the softness of the morning light filtering through the curtains. Didn't even remember to do the anxious Nauseau Quotient Check. Instead wriggled further in to bed and luxuriated in the the three stolid lumps of contented cathood that were ranged around me, sleeping peacefully.
Lovely start to the day.