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JOURNAL OF VICTORIA'S BONE MARROW TRANSPLANT
 
 
100 DAYS CALENDAR
29”x29”,
made with hundreds
of hand-dyed fabrics

Spring/Summer 2002
- preparing for transplant-

Counting Down the Days until Admission
Day of Admission; Conditioning
Day of Transplant; Rebirthday
One week after transplant; Staying alive.
Two weeks after transplant; New life!
Three weeks after transplant; Growing cells, fighting infection
Fourth week after transplant; Minor complications.
Fifth week after transplant: Get me outa here!
Discharge from hospital to home; back to loving family
One week at home; fragile, but steady
At home for two weeks; life goes on
Three weeks of being home; and on!
   
   
  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.
 
 
COUNTING DOWN THE DAYS UNTIL ADMISSION
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 Junethe occasion of your 41st birthday. Thank you, and happy birthday.

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DAY OF ADMISSION

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 ALLyou 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 himeven at this stage as a patient admitted for a bone marrow transplantif 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 Jordanhow 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 townsister 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

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 bettera 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 bodyyou 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

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
Monday July 15 Day 14 (Victoria)
Day 14 and counting. Yesterday was not a stolen day by any meansI 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 goingcloser 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 removedit 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 gradercan'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 TanglewoodBeethoven. (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 sounda 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 roomher 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 towalked 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 Bridgewhat an amazing world we inhabit.

We give thanksfor 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
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 anythingno 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 painjust 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 herejust 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 poleone 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
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 childrenthey 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 companystrong 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 Jenyou 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 AvenueI 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