TUESDAY, JUNE 12, 2001
Well, steroids worked some magic. Though Carol is alternately tired and
wired, she's regained energy and an appetite.We took two short walks Saturday & she was up for a quick drive-by of
the Rose Festival fleet and festivities. She's also reached the point
(Day 60--Weds.) where she's allowed to venture out to non-crowded venues
like the cinema (masked, during the day when quiet, no touching...) AND
to restaurants that prepare food on the spot (no buffets, pre-packaged
or fresh foods still). She's hoping for lasting energy for a short
excursions on her birthday this Saturday, June 16th. We anticipate a low
key but celebratory and "aware" day (this time last year neither was the
case).She appreciates all the e-mails, notes, prayers and cards and hopes to
be better able to communicate herself, soon.Mona
FRIDAY, JUNE 1, 2001
Carol's doctors did some thorough exams last night and will be back
today. They think there are three possibilities--one an infection or
reaction to all the drugs she is taking; second, host vs graft disease
(described on the bone marrow transplant website)--which is treatable;
and she couldn't remember the third one. So she'll be in the hosptial
for the weekend and says she's viewing it as a weekend retreat...will
get some fluids and iv-delivered calories into her. So nothing grave,
just a slight setback til they figure out which of the three things it
might be. Still sleeping alot. More Monday.
Mona
THURSDAY, MAY 31, 2001Carol had to check back into the hospital today. She has been weak and
had on-going gastro/stomach problems for the past couple of weeks. Has
been sleeping a lot, is dehydrated (and probably hasn't had enough
calorie intake).The doctors are taking a look at her this afternoon. They have done a
stomach biopsy and a chest x-ray and are trying to track down the root
cause.More in a few days,
Regards,
Mona
Carol talked with Scott this evening and wanted especially to thank
all of you who have sent her messages, called, and otherwise sent
good vibrations!Thanks to the Red Cross, Carol is able to stay at the Portland Hilton.
(Two blocks from Pioneer Square-although you won't see her at
Nordstroms just quite yet!!!)Carol's white blood cells continue to rise. This is very good. Her
doctors told her that she continues to break records for this type of
recovery. Day +17 marks one of the first hurdles she has overcome:
this is a reason to celebrate! The next jump is day +100; that is
important because it signals the definite acceptance of the new
marrow. (This is Dr. Don speaking. I'm not a real doctor...well, I
faint at the sight of blood, so...take it with a grain of sodium
chloride...)Amy will help us pack up stuff Wednesday night and we'll take it up to
Portland on Thursday. Mona has arranged two guys and some Subway
sandwiches to help unload, so we won't have to do all the heavy stuff!
(What a sentence...obviously I didn't major in English either!).
Fortunately she has a lot of what she needs from down here, so the
sleeper sofa can wait a little while longer...(it takes 10 weeks...:-)Until later...
Don & Scott
For those who want more info on the process and next stages....
>From BoneMarrow InfoNet
THE TRANSPLANT & ENGRAFTMENT
When the transplant is completed, the days and weeks of waiting begin.
The 2-4 weeks immediately following transplant are the most critical.
The chemotherapy and/or radiation during conditioning will have
destroyed the patient's bone marrow, crippling the "immune" system. As
the patient waits for the transplanted bone marrow to migrate to the
cavities of the large bones, or "engraft" and begin producing normal
blood cells, he or she will be very susceptible to infection and
excessive bleeding. Multiple antibiotics and blood transfusions will be
administered to help prevent and fight infection. Transfusions of
platelets will be given to prevent bleeding.Extraordinary precautions will be taken to minimize the patient's
exposure to viruses and bacteria. Visitors and hospital
personnel wash their hands with antiseptic soap and, in some cases, wear
protective gloves and/or masks while in the patient's room. Fresh
fruits, vegetables, plants and cut flowers are prohibited. Blood samples
will be taken daily to determine whether or not engraftment has occurred
and to monitor organ function. Once the bone marrow is producing a
sufficient number of healthy red blood cells, white blood cells and
platelets, the patient will be discharged from the hospital, provided no
other complications have developed. BMT patients typically spend four to
eight weeks in the hospital.WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow transplant is a physically, emotionally, and
psychologically taxing procedure for both the patient and
family. Imagine the symptoms of a severe case of the flu - nausea,
vomiting, fever, diarrhea, extreme weakness...for several weeks.
Walking, sitting up in bed for long periods of time, reading, talking on
the phone, etc. may require more energy than the patient has to spare.
Complications can develop after a bone marrow transplant such as
infection, bleeding, graft-versus-host disease, or liver disease, which
can create additional discomfort. Pain, however, is usually controllable
by medication.In addition there is emotional and psychological discomfort. While the
transplant offers hope for their recovery, there's no guarantee of
success. Second, patients undergoing a transplant can feel quite
isolated. The special precautions taken to guard against infection can
leave a patient feeling detached from the rest of the world and cut off
from normal human contact. 'Helplessness" is also a common feeling. The
long weeks of waiting for the transplanted marrow to engraft, for blood
counts to return to safe levels, and for side effects to disappear
increase the emotional trauma. Recovery can be like a roller coaster
ride: one day a patient may feel much better, only to awake the next day
feeling as sick as ever.LEAVING THE HOSPITAL
After being discharged, a patient continues recovery at home for two to
four months. Patients usually cannot return to full-time work for up to
six months. For the first several weeks the patient may be too weak to
do much more than sleep, sit up, and walk a bit around the house.
Frequent visits to the hospital or associated clinic are required to
monitor the patient's progress, and to administer any medications and/or
blood products needed. It can take six months or more from the day of
transplant before a patient is ready to fully resume normal activities.During this period, the patient's white blood cell counts are often too
low to provide normal protection against bacteria encountered in
everyday life. Contact with the general public is therefore restricted.
Crowded movie theaters, grocery stores, etc. are places recovering BMT
patients avoid during their recuperation. Often patients will wear
protective masks when venturing outside the home.A patient will return to the hospital or clinic as an outpatient several
times a week for monitoring, blood transfusions, and
administration of other drugs as needed. Eventually, the patient becomes
strong enough to resume a normal routine and
to look forward to a productive, healthy life.LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function
normally. Patients are closely monitored during this
time to identify any infections or complications that may develop. Life
after transplant can be both exhilarating and worrisome. On the one
hand, it's exciting to be alive after being so close to death.
Nonetheless, there is always the worry that relapse will occur.
Furthermore, innocent statements or events can sometimes conjure up
unpleasant memories of the transplant experience long after the patient
has recovered. It can take a long time for the patient to come to grips
with these difficulties.IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the
alternative is near-certain death. Despite the fact that
the transplant can be a trying experience, most find that the pleasure
that comes from being alive and healthy after the
transplant is well worth the effort.--
Mona Buckley
Executive Director
Multnomah Bar Association
630 SW 5th Avenue Suite 200
Portland, OR 97204
Phone: (503) 222-3275
Fax: (503) 243-1881
Wednesday, April 25, 2001
Spent a couple of hours with Carol yesterday early evening. After 3-4
days of extreme grogginess, she was chipper and alert! Her white blood
cell count went way up so we went for her 2nd walk of the day--out of
the transplant ward. She was masked but essentially with her count up,
the risk of infection is subsiding AND it bodes well for the graft
"taking"! They actually mused about releasing her as early as the
weekend.... This Friday is day 14 of the crucial 17.Then she goes to the hospital 2-5 times per week and live within 20 mins
of OHSU for 3 mos. Her apartment is less than 1/4 mile from mine, cute,
new and she's loving decorating it by catalog. They feed her 2,000
calories a day through an IV. Still no fresh foods like salad for 90
days and no restaurant food for 60, while her body fuses with the
mystery man's--and she vows to become a master chef!
Regards
Mona
Scott & I just got back from Portland. We saw Carol before noon, then went
back later in the afternoon (after we went shopping for her...she is on a
mission!)I have attached a photo for those of you who can open jpg attachments. For
the rest of you, sorry for the extra download time!We thought you might like to see the room where Carol is healing. She has
big windows, and the room is spacious. You can't see it, but there is a
spare bed there. You might notice some posterboard in the windows...These
are Carol's interior design plans for her apartment. It is going to be
great! I took a few pics of her new apartment building too; I'll include one
of those in a future message!Carol had us going from one end of NW 23rd to the other, searching out just
the right items for her apartment! (It was a tough job, but SOMEBODY...)Carol had a slight rise in white blood cells. The _MAY_ be a good sign. It
is very early to predict that the graft is taking place, but if so, that is
a VERY good sign.In the meantime, Carol was VERY VERY tired today and had a rough afternoon.
The anti-nausia medication they gave her made her sleepy. They are trying a
different one to see if they can hold back the nausea without the nasty side
effects.Carol looks good, and her spirits are high.
More to come....
Don & Scott
Can you believe it has been over a week since Carol's transplant???
She is doing so well. Scott talked with her today and says she has had
only mild fevers. This is great. The doctors agree she is doing very
well.I guess Pottery Barn is going to have to do a major re-order after
Carol finishes decorating her new apartment. She is planning
everything from furniture to accessories.Jan is planning to go up in the morning tomorrow (Sunday) and Scott
and I will go for the day. We should have a more complete update for
you tomorrow eve.Since she has been sleeping for the past three days, she now has lots
of energy! A very good sign! However, beware if you plan seeing her.
She gave Scott a detailed list of things for him to bring up to her!
(Which he will gladly do, of course). Scott calls it her "teacher
mode"!!!Keep those cards and letters coming! (Just like the movie stars, she
doesn't always answer every one, but she does read and appreciate them
all.Take care until tomorrow,
Don & Scott
We're in Day 5 of the crucial 17. Spent a few hours with Carol last
evening. Sleepy a lot and still stomach problems but being fed
intravenously so relatively fine and in good spirits when not sleepy.Since there are new people on this list, confirming address for mail:
OHSU, ATTN: Carol Provance, Oncology/Transplant, 5C-17, 3181 SW Sam
Jackson Rd, Portland, OR 97201-3098. No flowers allowed, but phone cards
and fun cards/notes welcome! (Not alert at certain times, or for lengthy
calls or visits during this two-three week period, but she is checking
e-mail almost daily, and that address is cprovance@yahoo.com.)Liz and I and Cindy are visiting almost daily, between the three of us
so will keep you informed every couple of days. I'm sure the "karma" of
this list is working and part of the cure!
Mona
Day +3!!!
Scott just returned from Portland with lots of news:
When he arrived yesterday Carol was very "up". They talked & planned
how she will decorate her new apartment in Portland. I'm sure it will
be FABULOUS (in a Jewish Princess sort of way!)Unfortunately, that wore her out and she had to take a nap then fell
asleep early. She has trouble sleeping at night though, between the
nausea and diarhea.She is having some swelling in her hands that is making her
uncomfortable. They took an ultrasound to see what was going on. The
docs are very careful, and only want to treat exactly the best way.
The whole unit is very cautious too; they sterilize everything (and
everyone) that comes in!The next ten to 17 days should show some growth of new healthy cells.
At least that is what they are looking for. She is resting a lot
(which is exactly what she needs).Through it all, she is keeping a great attitude.
Carol is in good spirits, radiation is hard but other than a few sleepy
days due to not sleeping through the night, is enjoying her cute
doctors. (Believes OHSU has a policy that they have to submit a glossy head shot with their employment apps.)I'll be there today, with her mom. They will probably do the transfusion overnight. More on Monday (I'm only on-line at work) or Scott will update you when he visits Sunday. The Easter/Passover timing seems like positive serendipity, regardless of one's religious disposition.....
Mona
PS For mail (no flowers allowed), OHSU, Carol Provance/Bone Marrow Ward,
5C-17, 3181 SW Sam Jackson Pk Road, Portland, OR 97201.-
Mona Buckley
Executive Director
Multnomah Bar Association
630 SW 5th Avenue Suite 200
Portland, OR 97204
Phone: (503) 222-3275
Fax: (503) 243-1881
I was up there Wed/Th to sit bedside (sounds like a Jewish term!). Carol was her usual self -orchestrating all activities, menus, providing guided tours of the skybridges and art exhibits, exhibiting her hospitality by offering whatever morsels of food she had to guests - whoever sent her that dark, wonderful chocolate, Thank you!
She was very tired Wed but I was relieved to see a perkier Carol on
Thursday and felt better about heading back to Eugene on that note. So, now the assimilation begins and I know that as strongly as Carol wants thisdonation, there's not a chance that it won't "stick" to her - as we all do.The journey continues and begins at the same time. We're with you
Sweetie!Gretchen
Date: Sat, 14 Apr 2001 11:19:32 -0700 (PDT)
From: Carol Provance <cprovance10@yahoo.com>Love you guys,
Thanks for keeping those emails coming. Though I'm
not able to write that novel yet I do like receiving
and sending the notes.Everything going well today, I 'm a bit "puffy" and
shaky but what do you expect with this 44 yr old bone
marrow floating around in me!Love,
Carol
Subject: Carol's Day +2
Scott went up this afternoon to stay with Carol. Through much
electronic static (I felt like that commercial:
"Kshrrrshshshkrrr...what's that?"...) I found out that She (the
princess) is doing ok. She was up and walking around when Scott
arrived, although she needed a nap and still went to sleep early this
evening. She has had some nausea & gets very tired.Carol says she loves getting those emails. She just doesn't have
energy to talk on the phone, but can read the emails (or someone can
read to her).Her Doc told her that the immune system is not yet at the bottom (like it soon will be). They expect that around the beginning of the month
they will see some signs of bone marrow recovery.Carol, of course, has her incredible, positive attitude. That, I'm
sure, is what will get her through!!!Take care all, Hope you had a good Easter
Don (& long-distance Scott)
I was there for the transplant which was essentially like a blood
transfusion, 25 mins. of dripping ruby red miracle juice.... It goes
into the heart and knows where and how to spread...amazing. It was
exciting, if low key.I joined Scott there last night. It's a large, cozy room which we now
call her hotel room...(only in part because of the Four Seasons Maui
hand-towels I "stole" for her/it....) At Easter mass, I felt sure that
the symbolism of the timing--of rebirth--was more than a cooincidence.
She's having minor stomach problems, in and out of sleep with short
spurts of energy, but in good form. Wearing regular clothes so she can
get up and about (did 10 mins on the treadmill)!
More later in the week,
Mona Buckley