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Following
is a journal I kept on a website entitled "TeamVictoria".
The website was sponsored by CaringBridge. The journal entries
began when the website was set up a week prior to scheduled
admission for my bone marrow transplant, and continues until
the 86th day after the transplant. Day 100 is generally thought
of as a landmark in a successful transplant.
My husband
Greg and I wrote most of the journal entries to keep our
family friends informed on the status of the transplant.
The authors also include a close group of friends whom Greg
and I gathered together 40 days before the transplant for
support throughout the process. We called this group 'the
Psalmists",
because there is nothing in human experience that is not
expressed in the psalms, and we all needed a place to express
our helplessness and despair, as well as to offer praise
and gratefulness.
I chose to have the transplant at New
York Presbyterian Hospital because of the extraordinary care
I had received there for the previous year and a half for
treatment of leukemia. Our home, children, church, and support
community are in Philadelphia, so we had to find a way for
everyone to stay connected despite the distance. Greg stayed
with me in my hospital room throughout my 7 1/2 week hospitalization,
and was relieved by the Psalmists when he took breaks to
go back home to Philadelphia
The entries have been slightly
edited. The author, the date, and the day in transplant
language are given at the beginning of each entry. I have
omitted the greeting and ending in most cases to reduce
redundancy. |
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COUNTING
DOWN THE DAYS UNTIL ADMISSION |
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Tuesday June 11
Day 20 (Greg)
We have been counting down the days till we enter the hospital.
We started at 40 days, when the Psalmists first met. This
waiting time has had its ups and downs but the 40 years
the Israelites wandered the desert is an apt parallel.
These days have been scary and fraught with uncertainty
and anxiety. We now are down to 5 days till we leave. We
will leave Philadelphia at 4 a.m. on Monday the 17th and
travel with Victoria's sister Cathy, who is the donor of
the stem cells, and Cathy's daughter Carmen to New York
Presbyterian Hospital. On Monday
Cathy will have the cells harvested and Victoria will begin
twice daily total body radiation.
Friday
June 14 Day 17 (Victoria)
Remember what William Blake wrote? "We are put on
this earth for a little while in order to learn to bear
the beams of love." The beams are brilliant and
undeterred, but I am learning to bear them. Here's
my own addition: once the beams are sent, they intensify
and come right back at 'cha.
Victoria Friday June 14 Day
17 (Greg)
Well, we got thrown another curve yesterday but I think
we're going to be able to take advantage of it. Victoria
got a call from her doctor, Dr. Schuster, whom she
loves and trusts completely. He told her they needed
to move her admission date back by a week to June 24.
This way he'd be there while she was in the roughest
days of treatment. We were, at first, knocked back
on our heels, as we and our entire support group were
geared up to get started. But within a couple of hours,
we started to see that this is really a gift. Both
of us are totally exhausted from trying to get everything
done, talk to all of our friends, etc. Neither of us
feels as grounded and centered as we'd like. So, we've
decided we'll say our goodbyes to our community as
planned and then we're going to take a VACATION. Through the good graces of Victoria's cousin Steve we
have access to his apartment in New York. So we'll spend
a couple of days enjoying our new New York neighborhood.
We have a couple of leads on a good deli, etc. We also
have wanted to go together to Holy Cross Monastery near
Hyde Park along the Hudson in New York so we've signed
up for a couple of days of rest, relaxation, wonderful
food, and prayer. We may be incommunicado for a while
but will try to check back in as soon as our batteries
are recharged.
Greg Saturday June
15 Day 16 (Victoria)
Hello friends and family, I am much relieved that we
have one more week before going in. We need serious
refueling. Many thanks for the many words and signs
of love and support. It works!
Victoria
Sunday June 16 Day
15 (Barbara
(psalmist)
Wasn't the "healing service this morning at
St. Martin's powerful?!!!!! I'm tellinya! The presence
of the Holy Spirit was among us, no doubt about
it.
I was struck by several things during the service.
First, the anthem that the choir sang-a setting of
Julian Norwich's "All
shall be well, and all shall be well, and all manner
of things shall be well." Now, if that's not a
message, what is?
The music, the light coming through the glass windows
in the north transept, Victoria looking so radiant and
beautiful (as she always does), the faces of so many
friends and family around her and throughout the congregation.
Each element in its own right was remarkable. All together,
it was stunning.
Then, at the conclusion of the service, the Rector
asked us all to gather around Victoria and Greg. We
stood in the center aisle of the church. Joanna and
Jordan were right there. So were John (ex-husband),
Cathy (donor sister) and Carmen (Cathy's daughter).
We all pressed in close around this nucleus of love
and laid our hands on whomever was closest, creating
a bridge to Victoria, who stood at the center. Then,
using the words of the prayer book, Bob anointed Victoria
with oil, making the mark of the cross on her forehead
and blessing her, while we all prayed along silently.
Earlier, in his sermon, he had talked about how the
Gospel for today is fully of "imperatives":
CURE the sick CLEANSE the lepers, CAST OUT demons.
As we all gathered in this intense clutch of faith,
all focused on Victoria, I could feel us adding our
own imperative: HEAL!
Experiences like this transcend words. I can only say
on behalf of us there this morning, something powerful
moved among us. May that power sustain us all in the
weeks to come.
Barbara
Monday June 17 Day
14 (Greg)
Sunday we went to church at our Church, St. Martin's
in the Fields. The preaching by Bob was stimulating,
the singing by the choir was beautiful and Ken, the
choir director, had chosen a Brahms piece just for
us. At the end of the service, Bob, our rector, called
our family into the center aisle and asked the Psalmists
to join us. He then asked the congregation to form
a web of hands with us at the center and then prayed
for our healing. The Holy Spirit was clearly whirling
around as this was very powerful and we felt a huge
outpouring of love and caring. Tears were plentiful
and cleansing. We are so lucky to be part of such a
wonderful community -this has allowed us to transform
this illness and our reaction to it in ways that have
been and will be healing of us and others. Thank God.
Greg
Friday June 21 Day
10 (Victoria)
Vic here, well,
sort of. First on my list is recognition of my sister
Cathy, who was in New York on Monday and Tuesday harvesting
her stem cells. The process was long, tedious and uncomfortable
(at least by my observation), but Cathy was steadfast
and uncomplaining throughout. During her two days in
the outpatient oncology unit she saw enough to last
a lifetime. However, Cathy is able to rise from the
lazy boy and celebrate. She masterminded our taking
in of Mama Mia! Fabulous. So there we were, at a Broadway
musical on a Monday evening with our daughters, Carmen
and Joanna. Seemingly simple. But the sisters had perfectly
matched bone marrow, and one sister was in the process
of saving the life of the other. Cathy, the summer solstice celebrations are really in
recognition of your great bravery and generosity on the
21st of June—the occasion of your 41st birthday. Thank
you, and happy birthday.
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DAY OF ADMISSION |
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Monday
June 24
Day of Admission Day 8 (Greg)
The waiting is over. We entered the hospital this morning
and have a lovely room with a view of some lovely trees
and the bustle of York St. in the background. It took us
three wheelchair loads to get all our stuff up here but
we got it done. Victoria has had her first dose of total
body radiation and held in there quite well while a team
of 6 doctors, physicists, technicians got her strapped
into the target area just right. She endured twelve minutes
of radiation and came out smiling. She's now back in the
room and decorating it quite tastefully. Know that we feel
your prayer and support. We were so touched by the hot
sweaty efforts of Steve and Jack on Saturday tearing out
the paneling in our moldy basement. Still could use more
volunteers for this Saturday's work party.
Greg
Monday June 24 Day
of Admission Day 8 (Victoria)
Dear friends and family--I have been an inpatient for
13 hours and 16 minutes, and the novelty has worn off.
We are just out of the starting gates with two sessions
of total body irradiation today. The procedure itself
is totally painless. It does take some time to get
the body perfectly situated, however, and one does
have to stay still. This evening my skin feels a little
warm as if I spent too much time in the sun. Otherwise
I am fine and joined by my most patient and amiable
husband.
Your messages encourage, support and strengthen me. It
is great to hear from the CML warriors who wage battles
on other fronts. May we all be zero's one way or the
other. Thank you, too, family and friends for sending
a word or two. Just the mention of your names fills this
room with your companionship. All is well, all will be
well.
Victoria
Tuesday June 25 Day
7 (Victoria)
I continue to be nourished by your words of support and
prayers. They are keeping us up. We are in day 2 of
admission,or -7 of transplant. "Conditioning" is
well underway. This morning I had my third session
of total body irradiation, this time with lung guards.
I now have PROFOUND respect for radiation therapists
and specialists. Talk about details...The hardest thing
is to keep from moving AT ALL—you just don't want
those rays to go where they don't belong. It is a surreal
experience. I have earned many accolades for my standing
still behavior.
Today I am more tired than I have been,
although functioning pretty well. As my white counts
go down there will be less and less energy. Already
there has been a marked decrease in my IQ.
We are impressed with the competence
and compassion of the staff on this unit. Two items have
been scarce--"the "butterfly",
a certain type of needle used to draw blood, and cots.
So far we have procured both. The foldout chair intended
for overnight guests is, in reality, called the "paralyzer".
This morning Greg was not paralyzed, but well rested
after a night on a comfortable cot. He is headed back
home today for a break from the royal suite.
Word is good
from home; both Joanna and Jordan (children) started
their summer jobs yesterday and are happy with them.
I hear that sister Stephanie is getting her chance to
finally get my house clean. Look what it takes! Michael's
psalm and poems hit the target exactly, precisely. You
amaze us, Michael. A word to Mary, whose enlarged photograph
of the sanctuary of St. Martin's gives me sanctuary.
It is gorgeous. All is well, and all will be well.
Victoria
Wednesday June 26 Day
6 (Victoria)
Dear loved ones: If you have had a chance to read any
of the guestbook entries from the yahoo CML group,
you will notice that this is a particularly strong
group of people. We refer to ourselves and to other
CML'ers as warriors and Vikings. That is what is needed
to combat this fascinating and often capricious disease.
This morning Dr. Schuster checked in on me and I had
to ask him—even at this stage as a patient admitted
for a bone marrow transplant—if I really have leukemia.
The paradox of CML is that one appears and feels perfectly
fine, but there a threat ALL THE TIME that the Philadelphia
chromosome will have a huge party that will wreck the
whole house. So we have to fight as warriors, as Vikings
to send the errant cells packing. To have to undergo
this regimen of total body irradiation and chemotherapy
to wipe everything out seems extreme, but I will do
ANYTHING to reverse the course of this disease.
Today I had two sessions of TBI. It is a little like
being tied to a rack, although there is no pain or discomfort
involved. You just can't move for 10
minutes or so. Once I got into warrior mode on the outside,
I spent some time interiorly in mother mode looking at
my children, Joanna and Jordan—how they felt in my arms
as infants, how they feel now as teenagers when they
put their arms around me. And I find that the radiation
is not intimidating, but that it is clearing the way
for new cell life for my marrow, and hopefully more time
with those whom I love desperately.
All is well, all will be well.
Victoria
Thursday June 27 Day
-5 (Victoria)
We have successfully finished all 8 sessions of total
body irradiation, and I should be well done on the
inside. That was a very interesting experience. While
I would wait for my turn at the big machine, other
patients would come and go wearing a hospital gown
and in their business shoes and socks for a little
touch of radiation therapy before going to work. Amazing.
I have found out that I am very good at taking radiation
therapy. It is something I will be sure to include
on my resume.
Tomorrow I will have the port installed
to ease getting labs and administering medicines. Then
in the afternoon CHEMO. Oh my. The good news is that
the path toward cure is underway.
A special thanks to
psalmist Kate who traveled by bus from Philadelphia
to spend Tues night and Wednesday with me. She has
gotten a good lay of the land, and was a gentle but
steady companion through some difficult moments.
Greg
will be with me now for a couple of days. This is a
tough spot for someone who ordinarily runs a business,
and runs a life at "full-on". There is alot
going on in Philadelphia right now and I wish I could
be a fly on the (to be painted) walls. The power of two
Bartling women is in town—sister Stephanie and mother
Ruth. Watch out! Sister-in-law Nance sent a care package,
including homemade cookies, to the nursing staff on 2WEST.
That was thoroughly appreciated by these hard working
professionals.
Victoria
Saturday June 29 Day
2 (Greg)
It is Saturday night and all is well and I'm feeling
immensely grateful. I have a particular strong feeling
tonight of the two of us being held in the palm of
a gracious and loving God and the fingers and the palm
and the nails are made up of those of you who are checking
in on us at this site, of the nurses here who are so
extraordinarily kind and gentle, of our friends and
family who spent today scrubbing down our basement,
washing curtains, painting walls, mowing lawns, etc.
Thanks so much to all of you.
Vic has just finished her 2nd and last day of chemotherapy
and is actually quite chipper. The cytoxin she has been
given is nasty stuff and has the job of destroying the
cells in her marrow but Vic has "strong protoplasm" in
the words of her Doctor, Michael Schuster, and is staying
very focused and prayerful. And yet she still sparkles
and riffs with me. I know there are still tough days
ahead but so far all is well, all is well, and
all is well. This last is a phrase from Hildegarde of
Bingen, a wonderful Christian mystic whose prayer, set
to the music of Bach, was sung for Vic at St. Martin's
the last time we attended and when we received the blessing
of our community. Have a holy Sabbath |
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DAY OF TRANSPLANT |
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Monday
July 1 Day 0 (Victoria)
This is July 1, my new birthday. I no longer have leukemia,
and I am well contented. My white cells are down to just
about nothing, and my old bone marrow is gone. This afternoon,
the mighty warrior Cathy cells will be infused and we will
begin the process of regrowth. Life is good.
Today I am not thinking of my own words as much as those
that I heard spoken by Annie Lamott on NPR. She read this
poem, written by W.S. Merwin that can be found in her book, "Traveling
Mercies".
Listen
with the night falling we are saying thank you
we are stopping on the bridge to bow from the railings
we are running out of the glass rooms
with our mouths full of food to look at the sky
and say thank you
we are standing by the water looking out
in different directions.
back from a series of hospitals back from a mugging
after funerals we are saying thank you
after the news of the dead
whether or not we know them we are saying thank you
in a culture up to its chin in shame
living in the stench it has chosen we are saying
thank you
over telephones we are saying thank you
in doorways and in the backs of cars and elevators
remembering wars and the police at the back door
and the beatings on stairs we are saying thank you
in the banks that use us we are saying thank you
with the crooks I office with the rich and fashionable
unchanged we go on saying thank you thank you
with the animals dying around us
our lost feelings we are saying thank you
with our forests falling faster than the minutes
of our lives we are saying thank you
with the words going out like cells of a brain
with the cities growing over us like the earth
we are saying thank you faster and faster
with nobody listening we are saying thank you
we are saying thank you and waving
dark though it is.
Love, Victoria
I can only say thank you, thank you, thank you.
Tuesday July 02 Day
1 (Greg)
Yesterday's bone marrow transfer was quite amazing.
The preceding week was all about destroying Victoria's
errant blood cells - those that were leukemic with
two transposed chromosomes which, when they became
dominant, would run rampant and eventually shut her
system down. So chemo and intense x-ray destroyed
them and all of her freshly emerging cells. This
was necessary but would leave her without a way to
make new blood. She'd be without white blood cells
to fight infection, red blood cells to carry food
and oxygen to the rest of her body, and platelets
to stop bleeding. So the stem cell transplant from
her sister Cathy was absolutely necessary so Vic
could not only not be leukemic but also stay alive.
So, yesterday, we said the midday prayer service
from the beautiful New Zealand prayer book and our
favorite nurse, Bita, who is the nurse practitioner
in charge of this ward, came in with all the apparatus
to infuse her with new stem cells, the mother cells
from which all other blood cells develop.
The bag was just a small plastic pack filled with a
pinkish brown fluid that had been frozen and preserved
for the last week since they withdrew it from Cathy
in a 6-hour sitting. But Bita treated it with great
reverence and care as she prepared Victoria's port
to receive the cells. Victoria asked me to take a few
pictures for Cathy and her mom and then I just watched
in awe. Bita hung the bag from the tall IV stand and
just let gravity start pulling it down and into Victoria.
I realized it was a river of life and rebirth going
into my wife and started crying tears of joy. The liquid
was not the color of a clear mountain stream but more
like the muddy Mississippi carrying fertility as well
as water. There were three million individual stems
coming through the tube and, over an hour and a half,
into Victoria's veins. I found myself praying and rooting
for individual cells. They need to survive the journey
first into the blood stream and then into Victoria's
marrow where they will take up residence and start
making new cells. The scientists just don't know how
or why this happens, they were just delighted some
30 years ago to find that it does happen. Perhaps not
unlike our wonder at how salmon or sturgeon living
in an ocean find their way back to the stream of their
birth there to spawn and give new life. Sorry to mix
a metaphor but I was also reminded of Madeline L'Engle
and one of her books from the series of books about
Meg O'Keefe and her little brother. I don't remember
which book but I do remember the part at which good
and evil, life and death, are not just struggling at
the level of nations, states, or even individual people,
but within one human body that is ill. There the mitochondria
within a cell are being threatened and the battle for
life is fought, with God on the side of life. Life,
thank God, wins. The river of cells which flowed into
Victoria yesterday are, I am quite sure a gift not
only from Cathy, but God. What an astoundingly complex
and beautiful body we have and how amazing is the world
in which we have been born. A gift from God. The technology
that made this stem cell transfusion possible is a
gift of the human and, I think, a holy spirit. I continue
to pray that those cells find their way, take up housekeeping,
and get to work. We'll know in a week or so.
Thanks for your prayers.
Greg
Tuesday
July 02 Day 1 (Victoria)
In bone marrow transplant terms I am on Day 1, having
received sister Cathy's stem cells yesterday. 99
days to go until we are out of the woods. So I
am singing "99
bottles of beer on the wall, 99 bottles of beer---take
one down, pass it around, 98 bottles of beer on the
wall....." That camp song is in juxtaposition
with the beautiful concert the talented Alyson and
friends put together for Sunday night's benefit concert.
Day 1 has to do with plunging counts. The radiation
and chemo have done their job and my white blood cell
count is now .1. So there is lots of concern for possible
sources of infection. Lots of meds, mouth rinses, lots
of meds...my red counts are still good so I have relatively
good energy. Greg is a wonderful companion through
all this. We have been watching the entrance to the
hospital, reading the Times, and listening to NPR.
I am looking forward to hearing a tape of the benefit
concert. On Thursday John will be bringing Joanna and
Jordan for a visit. Can hardly wait to hug my babies.
Victoria
Wednesday
July 03 Day 2 (Victoria)
Hello everybody, Geez, am
I tired of myself. It's time for a vacation! But
we have some miles to go, and I must say, I DON'T
WANT TO GO THERE! but, as I tell myself, there is
simply no option. So I have some of my incentives
right in front of me. Yesterday Connie sent me a
most welcome incentive to getting better—a photograph
of the reunion choir taken on Pentecost at St. Martin's.
I am so in love with this group that I was able to
turn from my rather fine self-pity toward a more
resolute position. I have got to get back to my place
in the choir. But, oh my, yesterday was incredibly
hard. I kept wanting to create a little door to my
body so I could step out of it for a while. Goodbye
body—you are the weakest link. No go. Back to the
body, things get a little better; I think I can keep
going. Today Dr. Schuster was on rounds and he commended
me on my progress. Though I have had rough times,
I have been doing incredibly well—"stealing days",
as he would say.
Victoria
Thursday July 04 Day
3 (John, ex-husband)
Joanna, Jordan, and I arrived midmorning today to
find Victoria beaming at the prospect of a reunion
with her children. Hugs all around held new meaning
now that the leukemia is officially gone and we're
on the up curve of healing. Joanna entertained her
Mom with stories of her job at Sloane Toyota and other
exploits while Jordan and I braved the almost 100 degree
heat at Yankee Stadium to watch the hometown boys beat
the Indians. Our visit allowed Greg a short break to
return home.
Victoria's caregivers are all astounded at her strength
and progress, and so are we. Thanks to all for your
thoughts, prayers, and caring.
John.
Saturday July 06 Day
5 (Greg)
Day 5 and all is well, considering
that Vic is in day 12 of voluntary confinement in
the hospital and not out of her room since Wednesday.
However, she is dealing extraordinarily well with
this isolation. We are having our own New York Film
Festival including The Borrowers, The Buena Vista
Social Club (Oh how those tunes keep going straight
from my brain to my feet and hips and no fit dance
partner to be found) and halfway now through A Beautiful
Mind. Vic continues to sew some, and loves to get
on the computer and check in. The sores in her mouth
are proliferating some and she now uses "The Magic Mouthwash" (that's
what it says on the bottle from the pharmacy - how
nice to find a little humor on a drug bottle) with
lydocaine, benadryl and cleansers that clean and
soothe those nasty mouth sores. The doctor has encouraged
her not to be a Lutheran hero but to take low doses
of morphine when it hurts too much. So she had a
dose today and was able to down a can of Boost to
get some food in. Her appetite is pretty much gone
and I sometimes eat behind the curtain because the
sight of food is generally unappealing. She also
finds it hard to talk some so we are inventing some
new sign language gestures. Vic has just showered
and found she is moving towards the Sinead look as
some hair was left behind. She said she has already
said goodbye to her hair but this will be a blow.
I am quite sure she will be a very sexy baldy but
she's not yet convinced. It also may be time for
her to open the hatbox she brought with her and try
out some new chapeaus. Please know that all you are
doing for us is being felt and appreciated. Overall,
Victoria is doing very well considering the nature
of the treatment. Her Doctor told her some months
ago that she has "good protoplasm" from
those German genes and that he thought she would
weather this storm very well. So far his prediction
is right on target and doctors, nurse and staff are
all amazed at how well she is doing. I have started
calling her VP, short for Victoria Protoplasm, the
super heroine who braves massive doses of x-rays
unscathed, who endures large chemo doses with hardly
a burp, and who will fly through the next four weeks
unharmed. As you can see, we also are using humor
to relieve our fears and lighten our hearts. But,
truth to be told, it is your prayers and love that
are buoying us both and making all of these potential
horrors tolerable and, I think, causing Victoria
to heal quickly. Keep praying for those stem cells
to make it home and get to work.
Greg
Saturday July 06 Day
5 (Victoria)
Entry in CaringBridge Guestbook
This
is in response to the debate that is going on in
the guestbook among my four sisters and brother.
The youngest sister, Stephanie, has claimed that
one (or more) of the sisters locked her in the attic
during one of her "meltdowns", and played Rosie
Greer's rendition of "It's Alright to Cry." at
full volume. Sisters Cathy, Betsy and Stacey, I want
you to know that this had a lasting impression on your
baby sister. When you visit her beautifully restored
and furnished palatial home in Syracuse, you will find
that eventually you will do something to offend one
of her "W" boys, Walter or William. Even
if you don't do anything but breathe, soon after your
arrival you will be sent to "jail". Jail
is the closet in the front fall. You will be sent there
for an indeterminate amount of time, and now matter
what means you have to bargain with the jailers, there
is no way you will be let out. The only relief is to
make yourself comfortable on the canister vacuum cleaner,
perhaps padding it with scarves and mittens. You may
also be offered snacks, consisting of Ritz crackers,
or Wheat Thins, in a zip-locked bag passed to you under
the door. I have never been offered liquid refreshment
while in jail. You will also be sent various reading
materials—Stuart Little, Mousie and the Motorcycle,
Curious George—also under the door, one at a time.
At time passes you will be granted the company of your
jailers, Walter and William. An then, while snacking
on crackers, and reading a charming book with your
beloved nephews, you might well imagine that jail is
on the outside, and what you have in "jail" is
just about perfect. That's not quite what it's like
in a bone marrow transplant unit, but pretty darned
close.
Victoria
Sunday, July 07 Day
6 (Michael, a psalmist)
Here it is 4pm Sunday afternoon
and this is Michael, visitor du jour, making a few
notes for Victoria, who is busy quilting. I arrived
at 9am this morning and Victoria and I spent the
morning listening to and commenting on the wonderful
tape of last Sunday's Benefit Concert at St. Martin's.
The tape is fabulous, as is the performance. Victoria
enjoyed it thoroughly, as did I. Paulo's rendition
of Richard Strauss's "Morgen" is
truly inspirational. The other amazing and artistically
superlative highlights are just too numerous to list.
Today has been a Benadryl & Chemo day, so Victoria
has needed to nap a fair bit. ("Hmmm, lemme have
a Chemo Cocktail on the rocks with a twist an' a benadryl
chaser. On second thoughts, make it a double").
I left around 11:30 and walked all the way to St. John
the Divine, my favorite cathedral, at 110th and Amsterdam
Avenue. As always, just walking in to the nave of St.
John's took my breath away and unbottled the mysterious
tears of sacred experience. If you haven't been yet,
I hope you get to go soon. The big fire in November
2001 did a lot of damage to the organ, the bookstore
and the North Transept, but there is still a lot to
see and feel and wonder at. As always, plenty of astonishingly
beautiful calligraphy is all around. Grace in Stone
and Glass and Color and Art, the lingering ethereal
presence of prayers and celebration, mystery and shared
pain. A Sacred Space. Cathedral time is good for the
spirit.
It's been good to be in New York, and great to share
a few hours with Victoria. Go Vic.
Michael
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ONE WEEK POST TRANSPLANT |
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Monday July 08 Day 7
(Victoria)
It has been two weeks since I was admitted to the transplant
unit, and I have difficulty knowing where the time
has gone. Can it really have been two weeks? I do remember
the conditioning regimen well, which I am paying for
now, and the excursions to interventional radiology.
In the spectrum of things, we have wiped out the leukemia,
but I am still lacking bone marrow. Cathy's cells have
been finding a place to take up residence, but the
engraftment process does not begin for a couple days.
Sometimes I realize how vulnerable I am right now.
Without the care and constant monitoring by a well-trained
team, I would die, most certainly. So, I try to make
friends with my various PIC and port lines which serve
as a lifeline even though the idea of having them makes
me sick. And I highly respect the skills and attention
of the nurses on the unit. They are truly extraordinary.
One thing I appreciate about nursing is the imperative
to do things right, every time. For BMT nurses that
means constant vigilance. There is alot on the line.
Yesterday while in the shower I just couldn't seem
to get my hair rinsed, and then I realized that the
time had come for the follicles to let go and my hair
came out by the handful. Now I still have some remaining,
but the overall effect is of a newborn mouse. I have
begun wearing scarves and bandanas. I did not melt
down when it happened because I had prepared for this.
When I had my major haircut during Holy Week, I had
tried to part with my strong identification with my
genetically endowed white hair. Still, I keep a picture
of me while my hair was longer, just to remind me that
this is a temporary parting. Dr. Schuster prepared
me for what is to come, by telling me that for many
patients the hair does grow back, but it is curly for
the first two years or so. He thought that Greg and
I might look like the Bobsie Twins. I had to ask if
I would also be getting a beard. He said no. When I
start to lament that my hair will not be the same for
a while, I need to remind myself that with this radical
treatment I will likely have the two years. Without
it, I would have hair, but no life. And that's not
an option. The mouth sores have abated somewhat and
I am able to eat little things, like the inside of
a Snack Well cookie. I don't know what got into me
when I ate the whole hospital meal consisting of meatloaf-on
Sunday night. Word comes in from the outside that marvelous
things are being done on our behalf. Brother-in-law Mike
made a Herculean effort and completely cleared out our
bedroom-including the carpet. One day. This guy is for
real—I have seen it over and over. Nance is just as amazing.
It pays to marry well, I am finding. Nance is a person
who will spontaneously send a gift, which has been a product
of "dammit" shopping. Sometimes a dammit gift
is the only thing that really hits the spot. Dammit.
Day 7 has been going just fine by my new standards. I listened
to the concert this morning, which took me totally out
of the discomforts of the moment. Life, overall, is pretty
good.
Victoria
Wednesday July 10 Day 9
(Victoria)
I am beginning to feel the effects
of survivor's guilt. We have a ways to go yet, waiting
for engraftment and then possibly graft vs. host disease,
but things are going very well—stealing one day after
another. Yesterday my white count was .1 (that's really
low), as were the platelet levels, so I had a platelet
infusion with benadryl subconsciousness for much of
the afternoon. Today it looks like the white count
is still .1, but all I need is magnesium. I have been
told that when the graft begins to take hold, it shows
up in the white count, but that the timing is extremely
variable. Cathy was never a shy sister, but perhaps
her cells are checking out their new digs. Yesterday
Greg and I brought out the movie Jordan had brought
up for me—Chicken Run. That was fabulous company for
the afternoon. Thanks, Jordan! We'll have to watch
it together. You know you are not going to get me into
the new Austin Power's "Goldmember"—no
way. That's what friends are for. (Except the "mini-me" stuff
looks pretty funny.)
Today Greg left for a respite in Philadelphia and I look
forward to a visit by Doc and Mary. Mary took a great
photograph of the sanctuary at St. Martin's and had it
enlarged to poster size. Everyone who comes in my room
takes a long time just looking at it, taking it in. I
also listen to the concert at least once a day, so my
room has become a chapel of St. Martin's in a way.
Wednesday July 10 Day 09
(Victoria)
Entry in CaringBridge Guestbook
It's always a treat for me to open the CaringBridge Guestbook
and to hear from people from so many people from so many
facets of my life; from aunts and uncles to fellow CML
warriors. You should know that each message is treasured.
Since I am feeling so good, I thought you wouldn't mind
if I spent a little time following up on a couple of
messages and giving you some background information about
how I got here in the first place.
If you were wondering
what a bone marrow transplant unit is like, I will do
my best to describe my room. I am in a double door suite
with an outer entrance for hand washing because I am
having an allogeneic transplant. The autologous folks
have one door. I am on the 2nd floor in a room with a
view of the entrance of the hospital. The entrance is
a good place to watch because there is always something
going on--taxis, valets, patients, visitors, balloons,
conversations...There is also a beautiful tree in the
entrance that one could look at for hours. There are
some patients who have a "river view" because
the hospital is right on the river, but I have been told
that that view gets boring after a week.
Because this
hospital is in a metropolitan city, there is a whole
cast of interesting and intriguing staff tending to
me—from every tongue, everywhere, every color. The
staff is just incredibly rich. The nurses work 12-hour
shifts for 3 days, and then have 4 days off. I think
each nurse takes care of 3 transplant patients on each
shift. They rotate with the Oncology floor where each
nurse takes care of 7 patients. There are differences
in style, between the nurses, but the care is impeccable
every time. These people have amazing skills—imagine
wearing rubber gloves, unlocking a valve, applying an
alcohol swab, maybe twisting it off with two clamps,
flushing the lines with solution and then reapplying
these little caps. Over and over. Transplant patients
can get really sick, so it is a labor intensive population
to work with. Nurse's aides come in every 4 hours to
monitor vital signs. The person that comes in at 6:00
in the morning has to being in a scale, as well as all
the other blood pressure and temperature taking equipment.
I
am tethered to an IV pole, and usually have at least
2 meds going in—mostly cyclosporin and antibiotics
and the usual dextrose thing. This is a rather unwieldy
companion on wheels. The rooms here are so spacious that
I cannot get to the bathroom without unplugging my pole
and bringing it with me. Every time. I figure they planned
it that way to get our butts out of bed. It works, but
every once in a while I forget that I am connected to
an IV, and I am pulled back like I'm on a leash to my
friend, the pole. In the morning the nurse unhooks me
for a while so I can take a shower and be free for a
while. I have a PIC line in my arm as well as a cathedar
in my chest, so each has to be covered and waterproofed.
The taping, as well as the removal of the tape, can be
uncomfortable, but it is well worth it.
Friday July 12 Day
11 (Victoria)
Today is day 11, and much is under
the bridge already. My counts show that I will need
platelets today, and the white count is holding at
.1. My red cells are dropping a bit so I am tired and
weak with fever coming and going. Today I will get
a new anti-fungal med, a chest x-ray, and a touch of
chemotherapy. A busy day for this gal. I have to ask
Greg what day it is, of the week, of the month, of
the transplant. It is hard to believe I am coming up
on 3 weeks of hospitalization. Yesterday Greg and I
watched "Stuart Little"—what
a delight! and the NYC NPR station is wonderful company
as well. I am missing the physical presence of my loved
ones, and can't even get a decent hug from my husband.
Soon enough.
Saturday July 13 Day
12 (Greg)
It's Saturday night and we're listening
to Prairie Home Companion- a nice touch of the familiar
here in what another Bone Marrow Transplant survivor,
Michael calls the "Bighouse". Not really jail but sometimes
feels like it. Earlier this week, Dr. Schuster told
us that we had been "stealing days" during
those days that things were going so much better than
we had expected. Those days were a pleasure but I'm
afraid now we're back on the expected and less pleasant
track. Yesterday morning's rounds brought us the news
that the low grade fever that Vic had during the night
over the last two or three nights should have disappeared
if it was a bacterial infection. They had been giving
her a broad-spectrum antibiotic that should catch most
things and the bacteria that did sneak into her intestines
had been successfully treated already. Thus they suspected,
but couldn't know for sure that there might be a fungal
infection. You can't always culture a fungus from blood
etc so they have to infer it's presence and I guess
when there is one it starts out with low-grade fevers
like Victoria has had. So they started Victoria on
a new antifungal drug, stronger than the one she had
been on. Unfortunately, it also isn't a great drug
to take- no long term negatives but you can get short
term problems like spiked fevers and chills. Unfortunately,
last night Vic got both, with shaking for about a half
hour and then a fever of 102 during the night. The
drug is called amphotericin B but the nurses and docs,
with hospital black humor, call it "shake and
bake" or "amphoterrible." Both of these
seem to apply to Victoria's experience last night.
She is just getting ready to receive another dose as
I write but this time they've upped the premedication
beyond Benadryl to include Demarol and Tylenol and
hydrocortisone. She's getting the full cocktail tonight
so she should just sleep through the whole shebang.
Her platelet count is also lower than it's been and
so she's been having nosebleeds etc. So yesterday she
had one transfusion of platelets and today she'll have
two transfusions, one this midday and another one around
midnight tonight. Each time she gets a transfusion
of any blood product she gets predosed with benadryl.
Today, she will have benadryl three different times
and will sleep through a lot of the transfusions. We
call it being bena-drilled. So goes today for us but
not bad in the larger scheme of things. I have met
lots of people here but two women stand out who are
keeping vigil with their young sons. One is Angel,
who was in a motorcycle accident over a week ago and
his mother kept vigil in the surgery waiting room next
door to this unit. She brought in a piece of folding
patio furniture to sleep on while she waited for Angel
to be allowed to come out of the coma in which they
are keeping him. He had a lot of damage and they want
some of the trauma to heal while he is still in a coma.
We got to know each other and have been praying for
each other. I haven't seen her for a couple of days
and hope that means that Angel has been moved out of
surgery ICU. The other is Valerie, a teacher like me,
whose 22-year-old son was diagnosed with AML, a different
and fast acting kind of leukemia last winter. They
rushed him back home from college and he went through
a bone marrow transplant last November. He didn't have
a related donor like Vic but instead receive the marrow
or stem cells from an anonymous female donor in Germany.
This is still a precious gift but not as valuable as
a transplant from a perfect related match like Cathy
gave to Vic. Andrew went home and was there for a week
but started having GI problems and was readmitted with
a bad case of Graft versus Host Disease. All transplant
patients get some GVHD but unrelated donors mean the
GVHD is worse than if you have a related donor. In
this disease, the donor's cells aren't recognizing
Andrew's own cells as being friends but rather as enemies
so they are attacking his intestines and he's pretty
miserable. Hadn't eaten for a week until they gave
him a colonoscopy to see if his GI was healing from
the attacks. Sounds promising as we heard through the
grapevine that he could order food today. But the horror
of a parent watching their child close to death is
overwhelming and puts our present situation in perspective.
Please keep Andrew and Angel in your prayers. There's
enough prayer to go around.
Greg
Sunday July 14 Day
13 (Cary, Deb and Michael, Psalmists)
We are finishing up a sweet day with Vic—who has doubled
her white cell count! .1 to .2 may not seem like much,
but the nurse says its really good news. She had platelets
and blood today, so lots of benadryl had her kind of
sleepy this morning. This afternoon, however, there is
color in her cheeks and perkiness in her speech, so all
those bottles seems to be doing their job well.
We are
listening to the concert tape, and chatting about border
collies, favorite music, and the wonders of New York
on a pleasant Sunday afternoon. During midday downtime,
Cary went to the Bastille Day Street festival on 61st
Street, ate a delicious seafood hotdog—yes, that's
what it was called—and reveled in the sidewalk vendors
by the Plaza, selling lovely photos of this gorgeous
city.
... This is Michael now. Deb & I
went to St. John the Divine for the 11am Eucharist
today. It was fabulous. Great music, lots of incense,
wonderful prayers, a really full house, including a
busload of Lutherans from Texas. Bp. Don Taylor (assisting
Bp, NY) celebrated, Jim Kowalski (Dean) preached on
sowers of seeds, fertile ground and the harvest of
good and evil, sown and reaped by us. Everything a
cathedral liturgy should be, and then some.
Victoria is most definitely holding her own .. what a
trooper! |
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TWO WEEKS POST TRANSPLANT |
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Monday
July 15 Day 14 (Victoria)
Day 14 and counting. Yesterday was not a stolen day by
any means—I was on a rigorous
regimen of 2 units of red blood cells, 2 units of platelets,
magnesium, tons of anti-biotics and antifungal meds. Alot
of these come with premeds to handle the side effects of
the big drugs, so I was pretty much in and out of it all
day. Fortunately I was in good shape to enjoy the company
of friends Cary, Michael and Deb. We listened to the concert
again. Wonderful. The doctors are trying to track down
some tightness in my chest/lungs as well as heightened
blood pressure levels. Most likely too much fluid retention,
so we're going after the diuretics today. That will pretty
much define what I do today. This is getting pretty tedious
at 3 weeks, but I am beginning to see the end of the hospitalization
phase. I have been helped enormously by visiting this site,
as well as the considerate and graceful visitors who have
come to sit with me awhile. My baby sister Stephanie is
here with me now; she arrived last night and sat through
a most grueling night as there was one consult/check after
another. She and I are conferring on wall paint colors,
which has always been a source of pleasure/pain between
us. I am so looking forward to seeing the renovated bedroom
with beautiful hardwood floors, and an accessible shower.
My white count was .2 today, as it was yesterday. So now
I believe that it is really an upward trend rather than
a glitch. In honor of this, I am wearing the flamenco dancer
pajamas my friend Peg gave me. She and her husband have
done some intercessory dancing on my behalf, so I wear
these great pj's to join them in spirit.
Wednesday July 17 Day 16
(Victoria)
It is day 16 post transplant. The length of the hospital
stay and the isolation are taking their toll; I dearly
miss the sensory experiences of everyday life and am
feeling increasingly fragile and vulnerable. All expected,
and yet undesirable. I am trying as best a can to "bear
with" the various indignities and discomforts,
but find that it is more difficult to see beyond to
the 100 day mark. Yet, the graft is taking, as evidenced
by a .4 WBC count, and there are no serious complications.
It's a minute by minute deal right now, but I am quite
confident that we will make it
through. I was visited by my cousin Stephen Bouman, who
is on a 6 month sabbatical as Bishop of New York Metropolitan
ELCA Synod. He had promised to companion us through this
process, and despite his numerous responsibilities and
engagements, he has done just that. Stephen is a powerful
writer and intellect, but can just get down there with
the best of them. His experiences as a cancer survivor
have helped to inform his understanding of human frailty,
and the importance of steadfast faith. So steadfast is
the word of the day; to just keep on going—closer to
the goal
of getting back to my life again. Thank you for your
steadfast care of me and my family. That is what is propelling
us at this point.
Victoria
Thursday July 18 Day
17 (Victoria)
We are definitely on an upward trend as my WBC went from
.4 yesterday to .5 today. Bita, the nurse practitioner,
also thinks that I might be generating some of my own
platelets. So as my counts continue to rise, I am being
prepared for discharge within the next few days. It
will involve eating, moving around and transferring
from IV to meds by mouth. That is no easy feat post
BMT, but I am trying to move along as best I can.
Today I had my PIC line removed—it is the one I had
in my arm, and really did not like at all. The broviac
is much easier to handle. It feels great to be on the
healing/grafting aspect of this procedure, and I am confident
that we are going to make it through, after all.
Friday July 19 Day
18 (Victoria)
Just a short note before fading off into a drug-induced
sleep. Things continue to go very well with the transplant.
My counts today show that the WBC went from .8 yesterday
to 1.2 today; so Cathy is definitely making her presence
known. I still don't have the inclination to get up
to eat in the middle of the night or to have matched
pj's-in fact, Cathy would be aghast at my print and
stripe combo today; but I do have Cathy's resolve to
get on with this anyway. I had a fever for the morning,
which they are watching, but has no explanation. In
other words, the cultures aren't growing any viruses
or bacteria. Sometimes it just happens. Other that
that, we have watched "Amelie" (too quirky
for me right now, but Greg loved it), walked the halls
a bit, and just served time. Today was Dr. Schuster's
third annual boat ride for former patients and staff.
This is a 4 hour cruise on the river, with live band,
dj, food, dancing and general celebration. Can you
imagine a more joyous group? I had begged to go, but
have to wait til next year. Greg tells me I am still
an 8th grader—can't go to the high school dance quite
yet.
Victoria
Sunday July 21 Day 20 (Barbara
and Jack, Psalmists)
It's 4 pm on Sunday afternoon and Jack and I are sitting
with Victoria as the sun begins its slow descent in
the western sky. A breeze is stirring the branches
on the trees outside the window. This is definitely
a room with a view. You can see people arrive in their
cars at the hospital's main entrance and then watch
a valet whisk the car away, just like you would at
a fancy hotel. Victoria has one of the New York NPR
stations on (I forget its call letters). We are hearing
the New York Philharmonic live from Tanglewood—Beethoven.
(Jack remembers when his brother first took him to
Tanglewood when Jack was 16 years old. Pleasant images
of sitting under the stars on the grass).
Being in Victoria's room, one feels compelled to slow
down. Maria is using the IV pump to infuse potassium
and phosphorus into Victoria's veins. The pump makes
a soft swooshing sound—a gentle accompaniment to the
string section. I keep wondering when the waitress will
appear asking for our cocktail orders. . . .
How can anyone look beautiful with
no hair? Beats me. But Victoria IS beautiful (inside
and out)even without matching pajama tops and bottoms. "My sister Cathy
is always matching," Victoria tells us. "She
would never leave the room looking like this." But
leave the room she does. She and Jack are off to make
a turn about the floor, nevermind the un-matching p.j.s.
I am impressed by this place. It doesn't
feel like a hospital. No harsh paging system interrupting
conversation. The nurses are all so young (or are we
just old?) And Victoria's beautiful artwork adorns
the room—her 100 days quilt, the "surely has born our grief and sorrows" quilt,
the stunning photo of St. Martin's chancel taken by Mary.
It's like entering a salon. Good conversation and a pace
that makes you want to stay and linger. How much is the
place and how much is Victoria's willingness to reflect,
to ask questions, to wonder about things. "What
do you think will happen next?" she asks.
Jack and I took a few hours to explore New York while
Victoria buzzed out on benadryl (sp?). We did something
we'd always wanted to—walked across the Brooklyn Bridge.
It was a warm afternoon but not too hot. Low humidity
and a breeze whipping off the East River. We sat on a
bench in the middle of the bridge and just sat amazed
at this engineering feat, begun just 5 years after the
end of the Civil War. Brooklyn Bridge, Caring Bridge—what an amazing world we inhabit.
We give thanks—for bridges and breezes and benadryl
and for Victoria's 5 star (no, make it 6!) recovery.
We are so richly blessed, every one of us.
Barbara (and Jack) |
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THIRD WEEK
POST TRANSPLANT |
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Tuesday July 23 Day
22 (Greg)
It is Tuesday evening and we are still in the hospital, much
to our chagrin. Victoria has continued to have the occasional
fever the last two days and has everyone stumped but not
alarmed. So to remove another possible culprit the doctors
ordered the removal of the Broviac line in her chest. This
has been in for the four weeks we have been here and Vic
has always hated the idea of a foreign object being in her
and maybe her body did too. So they removed it, somewhat
painful but manageable, I think. Unfortunately she stills
needs to get medicines etc. intravenously so they have had
to put in what they call a peripheral IV line. They have
put it in her hand and she is now hooked up to only one pump.
The first dose of stuff to go in burned but we're hoping
that is only temporary. My wife definitely is tired of being
stuck so we don't want to have to do it again.
We are both really tired of this and ready to get out. We
may well know that this has been an easy path compared to
the other patients here but we're still ready to be done.
A guy next door came in a week after us and his white blood
count has just gone up to .2 while Vic's finally reached
the magic number of 2.0 today but he had a fever of 104 yesterday
and Valerie was telling me that her son Andrew had a fever
of over 105 on and off for a week and had to be wrapping
in a cooling blanket. There is another man who has been unable
to keep anything in his stomach at all and is often violently
nauseous. So we try to keep the perspective of what might
have been and what we were spared but damn it, we still want
out. If removal of the Broviac works and the fever goes away
we might be released to a New York location later this week.
We'll see. Thanks for your continued encouragement and love
and support. It is such a treat to hear from so many people
and to know how many people are holding us in their prayers
and thoughts. It has definitely been working.
Greg
Wednesday July 24 Day 23 (Victoria)
Today is Day 23 of transplant, and Year 5 of marriage!
How could Greg have possibly imagined what it might be
like to love in sickness and in health? Just never know.
But I am so grateful for Greg, who has done more than
can be thought or imagined. I am free of both of my ports
and am back on the basic IV as I am weaned from IV to
oral meds. There are long stretches of time now that
I am not connected to anything—no tubing, wires, and
subtle clicking sounds. The lifeline has to become more
immediate for me now as I make the transition from this
protected environment.
There has been no talk of discharge today as I continue
to spike low-grade fevers. The fevers have no known origin,
so my team is asking for a consult from infectious disease.
It could be nothing at all, but these folks are REALLY
vigilant. Greg is in Philadelphia today getting refueled
after an overdose of his wife, and I have been visited
by my wonderful friend, Kate. She and I have been able
to walk the halls a bit and even got in a couple really
good laughs. I swear she knows what I am thinking before
I do. Kate took an opportunity to go to "Murphy's
Law", and then to Central Park. She will be coming
back with full reports of intercessory play after 3 or
4. Can you believe how fast the summer is going? I am anticipating
return to my family, friends, and home pretty darned soon,
and that thought keeps me from totally losing my marbles.
Victoria
Thursday July 25 Day 24 (Victoria)
I have to keep remembering that discharge is not the goal
here, but long-term complete recovery. I keep wanting
to jump the gun and get through the course quickly, but
that is not fair to the process my body needs in order
to regain full health. So I have decided to yield everything
(again, it takes me so many attempts to learn this lesson),
and to simply trust the prudent and wise judgment of
my team. An early discharge is not necessarily a badge
of honor. There are still miles to go.
I continue to be weaned from certain antibiotics. The anti-fungal
stuff will continue awhile. My doctors have asked for further
tests of my lungs, including a CAT Scan. An infectious
disease specialist did an exhaustive exam today and nothing
is really showing up to explain the fevers. The fevers,
by the way, have abated since the port was removed. It
looks like I will be discharged on Monday, but will remain
in NYC for a week. We still don't know those arrangements,
but Linda, the Social Worker, tells us she is on top of
it. I keep jumping ahead in my life, thinking that my return
to life as normal is going to happen right away; but then
I have to remind myself that it just isn't going to happen.
I might dream of going back to my work as a pediatric audiologist
by the time school starts, going back to my spot in the
2nd soprano section of the St. Martin's Choir, maybe going
on the LIGHT THE NIGHT fundraiser for the Leukemia/Lymphoma
Society, or driving my teenagers to various social engagements.
But, you know, it just isn't going to happen for a while.
So then I pout a bit, then pray for patience and endurance
so that I can run the whole race
through. Thank you for staying with me through these first
24 days, and as we go forward, forward, forward--I may
need you even more.
Victoria
Friday July 26 Day
25 ( Victoria)
Day 25-Wow. The doctors just completed their rounds and
so I thought I would pass the information on to you.
I continue to do very well-the counts are stable, although
not jumping wildly, still solid. The chest x-ray did
show something that had not been there at baseline, and
so I have had a CAT Scan. Today I go for bronchoscopy
to try to solve this little puzzle. It's a conscious
sedation procedure, so I expect no pain—just la la land.
They will adjust treatment based on the findings. No
word of discharge until they have this all figured out.
It could be that I will go home from here—just later
than expected. It's ok; I am just trying to remain curious
and patient. Tomorrow is the scheduled work party at
our home. I am so thankful to know that I will come home
to a safe environment. That would simply not be possible
without your help. Thank you.
Victoria
Sunday July 28 Day 27 (Victoria)
Sunday, Day 27, and holding. Today I have been attached
to the IV pole—one med after another. Dr. Schuster was
in this morning to advise me that there will have to
be additional tests for viruses tomorrow. Some of the
results of the bronchoscopy are still pending, although
there was a report today that the biopsy showed some
staph infection. A new round of antibiotics ensues, but
no huge concern. There is still no word of definite discharge.
One of my challenges is the sheer volume of time that
I have to spend in a relatively passive state. I have
never learned to love TV for pleasure, am unable to sustain
attention for reading, and cannot stand the sight of
a sewing needle. Believe it or not, today I got the most
pleasure from watching golf--beautiful greens, talented
athletes, not loud or abrasive. Greg stayed with me today
and plans to go back home tomorrow. Word has it that
our house has been completely transformed. I want very
much to be home again. It is frightening, though, because
exposure to bad bugs outside this safe harbor is a dangerous
prospect for a bone marrow recipient. I am getting pretty
paranoid about germs, dirt, dust, potential harms. It
will take some doing to re-enter real life. Perhaps a
few hundred hours of counseling will address all the
fears I have developed over the past 5 weeks. Nevertheless,
we are on our way up and out. We always pause by the
rooms of other patients who have been here far longer,
and have had far more perilous journeys. These are survivors
for sure. I am praying for the person who will be called
to take this room when I am discharged. I remember what
it was like to do the countdown with Michael and the
Psalmists, and hope that each patient will be assured
of the support of friends and family that just plain
gets one through.
Victoria |
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FOURTH
WEEK POST TRANSPLANT |
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Monday July 29 Day 28 (Victoria)
So near and yet so far. Test results are still pending so
I will need to stay until all questions are resolved, particularly
the persistent low-grade fevers. The good news is that my
white count is now 3.8 and the engraftment process is going
very well. So pretty soon my own marrow will be able to take
care of whatever bugs and viruses come my way. I am thinking
today of steadfastness, of forbearance, and of patience.
These are the gifts of the Spirit I need now as the marathon
continues. Greg is tending the home front today, and getting
a well deserved break from this environment so I have been
forced to my own devices (which usually get me into trouble).
The staff recognizes my pining for home and for my children—they
recognize the sadness that comes from being away from real
things for an extended amount of time. I also ADMITTED that
I am feeling sad and tired. This is my 35th day of hospitalization,
and the nurses/nurses aides have responded with great empathy
and reassurance. I have cried on many a shoulder today, and
to tell you the truth, sometimes it feels good to led down
my guard a bit and to just trust. Another lesson I have had
to learn and relearn.
One of the Psalmists lent me
his "A New Zealand Prayer
Book" for the duration of this hospitalization, and
since I have run out of every other option for strength
and courage, I opened the prayer book once again to this
poem by Edward Carpenter. It is my mantra today:
Let your mind be quiet, realising the beauty of the world,
and the immense, the boundless treasures that it holds
in store.
All that you have within you, all that your heart desires,
all that your Nature so specially fits you for--that or
the counterpart of it waits embedded in the great Whole,
for you.
It will surely come to you.
Yet equally surely not one moment before its appointed
time
will it come. All your crying and fever and reaching
out of hands will make no difference.
Therefore do not begin that game at all.
Do not recklessly spill the waters of your mind
in this direction and in that,
lest you become like a spring lost
and dissipated in the desert.
But draw them together into a little compass, and hold
them
still, so still.
And let them become clear, so clear-so limpid, so mirror-
like;
at last the mountains and the sky shall glass themselves
in
peaceful beauty,
and the antelope shall descend to drink and to gaze at
her
reflected image, and the lion to quench his thirst,
and Love himself shall come and bend over and catch his
own likeness in you.
My prayer today is for gifts of the Spirit for all of
us.
My prayer today is thanksgiving for my husband, who has
walked a very very long
way with me, and will continue (with God's grace) until
this marathon has ended.
My prayer today is for all my loved ones who continue to
uphold me through this
most difficult phase of treatment.
My prayer today is for joy and exuberance.
Love to you, Victoria
Wednesday July 31 Day 30 (Greg)
Sorry that we haven't made an entry for a few days but
we have been in the grasp of that old nemesis, the cloud
of unknowing. Victoria continued to have a fever over
the weekend and a few symptoms but the medical detectives
were stumped up until recently. One of the blood cultures
finally unraveled the mystery and it appears now that
she has a virus, which sometimes shows up in patients
who have had a bone marrow transplant. The symptoms are
a fever and sometimes some lung congestion. The good
news is that there is an antiviral drug that works against
the virus and hopefully the side effects of the drug
aren't too menacing. Victoria started receiving the drug
today and we're hopeful that it will clear things up
but even in the best of estimates we will be here till
early next week and then may still have to hang around
New York for a bit. Her blood counts continue to be pretty
good with the white blood cells jumping to near normal.
Her platelets still have a ways to go but she hasn't
needed a
transfusion but did need two units of whole blood last
night which hopefully will give her a little more energy.
Needless to say we are more than ready to be out of here.
It has been 5 weeks and 2 days now and both of our brains
are turning to silly putty. Our video choices now are in
the Disney range, 101 Dalmatians today. Boredom and fatigue
are another side effect but we are trying to rally our
spirits for one more run towards discharge. Your notes
and continuing encouragement do buoy us. Please keep them
coming.
I was home on Monday and our house is not only lovely but
also whistle clean. It is so reassuring to know that we
will be leaving one safe place only to enter another, homier,
safe place. Thanks to all of you who participated in the
construction and the cleaning. You are all saints!
Greg
Thursday August 1 Day
31 (Victoria)
Do you believe it is August already? Been here since June
24; stem cell transplant was on July 1. My sister Cathy
is getting integrated into my bone marrow, and now I
am producing alot of my own cells. My white count is
now above 5.0, which is pretty amazing since it was but
a "footnote" 3 weeks ago. The virus that was
identified by blood cultures is being treated with the
appropriate drug, and hopefully the low-grade fevers
will go away soon. They say a "few more days" before
I get sprung so that all issues will be resolved. Apparently
it is not unusual for transplant patients to run into
these fevers, and there does not seem to be alot of concern
about it. This last stretch continues to be a challenge
for me. I have the attention span of a three year old,
and have difficulty tolerating any sensory overload.
So the Mel Brooks videos we had rented are being replaced
by "Hook", "101 Dalmatians", and "The
Little Mermaid". I am also pretty grumpy. I know
that Joanna and Jordan are on their way to the Bartling
family annual vacation at "Auger's", a town
near Brainerd, MN. Joanna's friend Jen will be joining
her for her second year. After they get back, it is just
three weeks until school starts. I am really looking
forward to coming back to our home on Weldy Avenue, and
seeing all the changes that were made in such a short
amount of time. But for now, I am trying my best to be
patient.
Victoria
Friday August 02 Day
32 (Victoria)
We are definitely on an upswing now going into the weekend
with good counts, good energy, and relative optimism.
I have not had any fevers for 24 hours now, so if I continue
to be fever-free for another day, I will have met one
of the guidelines for discharge. Tuesday is the day (if
all goes well), and I will likely be asked to stay in
the NY vicinity for close monitoring for at least 5 days.
The weekend is basically a holding pattern. I will need
to have a nice clean CAT scan of my lungs before discharge,
and that can't be done until Monday. So I think that
by the time I really am discharged, I will be "overdue".
There is another patient on the unit who will probably
go home next week, and our places will be taken by other
SURVIVORS, who will benefit from extraordinary care.
Greg left this morning after rounds to get a dose of
home, including a Saturday in his bookstore. I will have
been here 6 weeks on Monday-can you imagine being a caregiver
that long? I think it is easier to be a patient. I was
joined by Greg's sister, Nance, who is wonderful company—strong
and fun, steady and empathetic. We have walked the halls
several times today and she is quietly encouraging me to
eat--even bringing homemade chocolate-oatmeal cookies (her
mom's recipe). Today I ate four cookies, when nothing else
appeals to me except "THE PERFECT ORANGE". That
prompted me to ask her if one could survive on cookies
and perfect orange. She dodged the question. I am heartened
by word from Minnesota that Joanna, Jordan, and Joanna's
friend Jen have arrived safely and are now involved in
a whirlwind of activities. Joanna and Jen—you are at Stacey's,
right? Could you spy on the people who are installing fabric
on the ceiling and walls of Stacey's dining room? We have
a project waiting at Weldy Avenue—I can't stop thinking
about fabric on walls. I will also need your help doing
the job.
I worked with Daniela, the artist-in-residence, this afternoon.
She has spent time with me every Friday, sharing ideas
and artist's works. This is my last Friday, and she asked
if we could work on a collage together. It t | | | |
