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

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

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!

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)

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

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 took me awhile to shed my insecurities in the company of an accomplished artist, but we began to work on a collage of an image I have been thinking about—of dry bones growing new life from the marrow. I talked with her about how I cannot even look at a needle anymore, even though sewing has my lifetime passion, and she has assured me that such reactions are expected and will likely go away in time. In the meanwhile, she has introduced me to paper, glue and scissors, which will be a safe and inspiring medium for a while. Thank you for all the movie suggestions. Nance brought a few "chick flicks". Tonight I think it will be "Moonstruck". Nance has just returned from her mission to find the "PERFECT BANANA". She brought five PERFECT BANANA's. Plus a pair of princess socks. Good job, Nance. Thank you again and again and again for your ongoing support. I think I see my way out of the woods now.
Victoria

Saturday August 03 Day 33 (Victoria)
Good news continues as I have gone more than 48 hours without a fever, and blood counts are strong. The weekend is a holding pattern while we watch to see if I continue to afebrile, and to wait for Monday's CAT Scan. I have only heard words of encouragement that discharge will be early in the week. Greg's sister, Nance, is my right hand woman, and we have taken many walks up and down, up and down, up and down the hallway. This afternoon we both completely crashed and passed the time in a semi-comatose state. It is a way to pass the time. Tonight will be spent watching chick flicks. It is really good to be on the final lap of this hospitalization. Boy, they are good here, but I really look forward to a return to some of the real life stuff.
Victoria

Saturday, August 10 Day 40 (Victoria)
I have been in a holding pattern for the past few days while the doctors watch and see if anything materializes in the cultures/biopsies. So far I am doing just fine, except for a few fever spikes here and there—nothing major. Sometimes I have to remind myself why I am still here, and don't really have an answer for it, except that they are exercising extreme caution. As of Monday, I will have been here for 7 weeks. Ugh.

Yesterday morning Greg left for a hiatus at home and to tend to the bookstore. He reports that he is catching a game of golf this morning before opening the shop. He will be back this evening for the last leg of this part of the journey. My good friend Peg arrived yesterday morning with perfect oranges, perfect bananas, and perfect grilled cheese sandwiches. Her latest fascination is with marbleizing, and she brought all of the supplies, including inks, brushes, "photo-flow", and papers. The hospital supplied the basins. We set up in the lounge and were joined by Daniela, the artist-in-residence, and Valerie, the mother of a transplant patient. There we went into production, placing paper in water with ink barely hanging to the surface. The dyed papers were laid on the floor on "incontinence pads" to dry out while further experiments went on the various dyes, inks and pigments. The afternoon passed very quickly, and Peg's visit was a major help.

My family (parents, siblings, and children) has just ended their weeklong annual vacation at a resort near Brainerd, MN, and is headed back to the twin cities. Joanna and Jen will return on Monday, and Jordan will stay another week for camping expeditions with Fred and his sons. Stephanie has done a wonderful job of keeping in touch with me, and it has been helpful to hear the voices of my dear ones. I still have no definite news about where I will be when, but expect discharge early in the week. I really want to be home by Thursday, when my sisters Betsy and Stacey are coming from Minnesota to stay with me over the weekend. I would rather it be home than a hotel in NYC. I have also been tantalized by descriptions of the bedroom suite and CAN HARDLY WAIT TO SEE IT. Sorry I have been remiss in keeping current. I hadn't realized how long it had been since we posted.
Victoria

Sunday August 11 Day 41 (Greg)
I'm back in New York with Vic and this is IV IG day where she gets three bottles of immunoglobulin. This happens every Sunday as a matter of course but it means she gets benadryl and sleeps through the midday. Unfortunately she has fevers again in the 101-102 ranges but no clear cause for the fevers. This is getting to be the standard story every few days it seems. Just as she gets through a stretch of a few days with no fevers and rising expectations that it is time to leave along comes a wrench in the works. She has no other symptoms at the moment but her patience is sorely tried. She did well by herself on Friday night and Saturday and I really appreciated the chance to get away and be in the shop and even play 11 holes of golf. Annie Richardson, my assistant at the bookstore has done a steadfast job of keeping it open but is ready for a break so we'll probably be closed the first half of this week unless we get sprung from the "bighouse" here in New York and can actually go home. But we are still in the "cloud of unknowing" and what is going to happen and when it might happen is very up in the air. Victoria's doctor, Dr. Schuster, has been on vacation and will be back on Monday and we hope to see him and see what he is thinking about this up and down fever pattern. Sorry that we haven't updated the journal as regularly as we had been. Part of it is rising and declining expectations that something will happen and we can actually give you some news. I also wrote an update on Friday but somehow must have goofed in having it entered. Probably better that it didn't appear, as it was quite a glum piece, a la Job in his dark hours. My perspective is a little brighter after a day and a half away. However, I also asked in that one, for your continued prayers that we can keep a positive hopeful perspective. We are definitely still standing in the need of prayers.

One other request. Our wonderful dog Tucker still can't come to our house in Oreland. Jim, the author of Tucker's journals on here, and his wife Kathy have graciously hosted Tucker at their home since mid-June. They will also take him for the remainder of his Exodus but they are leaving on the 17th for vacation and will be gone till the 25th. If we're back in town by then I could get over to their house and walk him and he will have company during the weekdays as Kathy's business works out of their home and her co-workers have befriended Tucker. But if anyone would be up to an 80-pound, gallumphing but very lovable Golden Retriever houseguest for that week he would probably be up to packing up his food bowl and joining you. Thanks for all your support thus far
Greg

Tuesday August 13 Day 43 (Victoria)
This morning Dr. Schuster and Bita came in for a morning chat-not the regular rounds, but to check in with Greg and me. He explained that fevers simply do not exist without cause, and they would want to remove the PIC line. So now I am completely without foreign bodies, and am taking all meds by mouth. Absolutely nothing else has shown up on cultures or biopsies. Today I had a chest X-ray and a pulmonary function test. Of course results are pending. Today saw an improvement in my outlook, as I am feeling closer to getting back to my life again. Yesterday I was nowhere I like to be-negative, withdrawn, uninterested. When I was lamenting my condition, my dear husband had to take a deep breath to inform me that I had indeed been cured of a fatal disease, the thing has worked, we're almost there (blah, blah, blah). Then, to add insult to injury, my cousin Stephen Bouman comes by for a visit that was rich in conversation and in meaning to me. He casually left 3 Granta's (perfect reading for convalescence) on "Necessary Journey's", "Music", and "What Other's Think About America." Then, he left a book called, "The Breath of the Mystic", by George Maloney (1974). A section entitled, THE DARK NIGHT, caught my attention. "God develops necessary pruning, this dying forth of the seed, in order that more fruit might be brought forth. This is a necessary dying to our self-reliance unto a deepening faith that only can come when we are in this darkness. We cry out for God to show Himself in the night of the soul where we understand our own absolute nothingness before God. There is a silencing of our own powers like the silence of steel in the black night. Now one has to stand firm and cry out in deep, dark, stark faith for the mercy of God to reveal Himself." I read that passage today and thought that never before have I known a desert experience like this, and had been held up by study, memory, constructs, experiences—all wonderful things, but abstract when nothingness exists. I hadn't even known I was in the middle of hot sand until Stephen prayed that it is in the desert that God is MOST present. "Desert? Me? Well, if Stephen says so." And I decided to just let it be so, and then the desert started flowering. I could read again, relate to my husband, work on some art, enjoy music, and cry for joy for the life I have been given back again.

I have also been eating more—tuna sandwich, Ben and Jerry's ice cream, Dorito's, a PERFECT orange, a KIT KAT. I have lost over 23 pounds, but will have no trouble putting it back on when the food situation improves. I am still hoping to be home by Thursday. If I am not, well, then, there is Always the desert again. Tomorrow Greg will go back to Philadelphia and Michael, one of the Psalmists, will join me. Greg says it is impossible to pout around Michael. I fear that he is right.
Victoria

Friday August 16 Day 46 (Victoria)
HOME AT LAST! HOME AT LAST! We have made it through the big hospitalization, and have returned home to complete the long process of growing new cells and re-developing my immune system. One of the adjustments has been to my old laptop that does not have the lickety-split connections of the computer provided with the hospital room.

We were discharged on Wednesday evening after appointments for follow-up with Dr. Schuster were arranged, and home care implemented. It was amazing to be outside after 2 months, to hear outside sounds, to be in the middle of NYC traffic, to watch pedestrians, look at neighborhoods. I hadn't realized how isolated I had become, and to tell you the truth, the outside seems overwhelming still. It does look as though I may have had the benefit of a climate-controlled environment in an oppressively hot summer (silver lining?)

It was an unbelievable feeling to come back home, but to a transformed home. I looked around; admiring all the attention to detail that had been paid by friends and family during our absence. I was overwhelmed by the redone master suite—the gorgeous floors, fresh paint, objects of affection from family displayed in a bookcase, my "stuff". And then to walk into the bathroom—WOW! A shower had been put in, floors put in, bathroom restored, curtains hung, cabinet made. I feel like I am in a 5 star hotel. And how gentle it is to make my way into the room where everything is safe and clean and comfortable. I know that I could not have come home without these Herculean efforts, and I will always be grateful for the moment I could re-enter home and have it more beautiful and functional that I could have even imagined.

I still feel a bit fragile (which I am), but can manage to get around the house pretty well, staying up most of the day. Greg has me all lined up with multiple medications in my own special pillbox, which he monitors very carefully. I can EAT! Sleep is fine--great to be back in our own bed, and did not even feel tempted to arrange it up and down like a hospital bed. Flat out is fine, thank you.

One of my great incentives for discharge was to get home to see my daughter Joanna who had just returned from Minnesota, and to be at home to be with sisters Betsy and Stacey who came on Thursday mid-morning. They have been great companions as I slowly re-enter, doing whatever they think I need before I can even think about it; battling germs, making delicious meals, and catching us up with the summer. It has been a perfect way to make this transition. I really need things to be gentle right now—feel like I have been through a war, and need time to gather myself together again.

I will need to avoid crowds, pets, and certain foods, outside stuff for quite a while. Today Betsy and Stacey accompanied me for a follow-up at Fox Chase so they could take a look at me. I truly look like a cancer patient, complete with mask, hat and gloves, but it does not really matter at a cancer center. Earned my stripes. But the reality of this in the context of everyday life is going to be a huge transition. Gentle goes it.

We go back to NYC on Monday morning for a chest CAT scan and then to Dr. Schuster at 10:00. Am hoping to meet with the psalmists for their Monday night meeting. Really want to be back in the fold--physically.

I cannot tell you enough how well you have sustained our family through this first almost 50 days. Being able to read your messages was honestly the highlight of my day, and just plain got us through. There is a ways to go yet, but the hard part is behind us. Thank you.
Victoria

Friday August 23 Day 53 (Victoria)
This warrior has been in the battle against the Philadelphia Chromosome, and I have won. Dr. Schuster announced to me in no uncertain terms that, "YOU ARE CURED!" and that upcoming tests would confirm it over and over again. This is what I was going for from the beginning of the diagnosis, and God-willing, will be what I will get. Even though the warrior is not just slightly used for wear, I am alive, eating, moving, laughing, sleeping, and paying attention. EVERYTHING is half as slow as it used to be. There are times when I wake up and I begin my normal list of things I want to do today, and then the big reality check comes in. NO, not today. Dr. Schuster tells me that I should not try to push myself back into life too quickly, but to simply trust my body's instincts—at the moment it means ready magazines, one after another.

Greg finally sprung free from the patient now that I am stronger and piled up his Suburban with lots of books to sell at a book show in Baltimore. This is his favorite show, and he enjoys the company of fellow booksellers as well as his well-established customer base. He left yesterday and will be back Sunday. I am SO GLAD that he has had a chance to do this as the last of the summer hurrah. That man is a major saint, and indispensable to my good outcome and recovery.

Sister Stephanie and her family traveled from Minnesota to their home in Syracuse yesterday, and she is going to come down to be with me over the weekend. I haven't seen her since she was in the hospital with me, and it will be great to read magazines with her.

Last evening Michael and Deb stopped by to check in and to share delightful conversation. It's sort of my "tuck in" time.

My teenagers are getting used to the idea of summer ending. Joanna will be going sailing with her friend Sarah and her family all next week. Jordan is at the shore with his friend Jonah. Now that they know Mom is ok, they can kick up their heels a bit. I could not be more proud of them.

There is nothing like being home to soothe the intense experience of the hospital routine. I feel absolutely "leveled", in all aspects, and will continue to for some time until some of the experience diminishes. Until then I just need to mind my rest, take my pills, don't push it, and give thanks for making it this far. Thank you for being with us throughout. We will continue to post, although perhaps Not daily.

We love this community.
Victoria

Saturday August 24 Day 54 (Victoria)
I recognize that it is August 24; two months after I began the BMT journey, and I am terribly grateful that the worst is over, that I have been declared "cured", and have the work of rebuilding ahead of me, but that it will happen. Gradually. I am not a particularly patient person, but when your body says "no more", well, I am going to pay attention. Mostly I go from being a couch potato on one recliner to another, thinking that I SHOULD be doing something productive, but can't. I am sort of scanning the projects I had started before I went in; including quilts for my children, and will overcome inertia one of these days to get my sewing machine going again. I have no idea what this experience is going to give me. I still feel flat, leveled, done in, and the more creative stuff is in deep hiding. So be it. I like to read junky magazines and catalogs. Shopping is out of the question. I have ventured outside with my cancer look—gloves, mask, bandana and try to carry it off, but it is a new feeling for me to be so different. My friend would say that I should be curious, not anxious, about the reactions of the well. Next week Greg and I will return to NY Presbyterian to check in with Dr Schuster. Hope he's happy. Until then, this is a slow and steady course toward complete health. Was it worth it? YES. Dr. Schuster says I'm cured.
Victoria

Monday August 26 Day 55 (Victoria)
Day 55 and counting, making slow but steady progress in managing some things for myself. Am aiming for New Year's Day-the 6th month anniversary of the transplant, when some of my confinement will end and we will convene a party of some celebration. My sister Stephanie, having just returned to Syracuse from the family vacation in St. Paul and Brainerd via minivan with Gary and their two boys, quickly made a turn-around to be with me for the weekend. She quietly and methodically insured that everything was in order, cleaning help lined up, ensured that there were sufficient Clorox wipes and extension cords. She is also a most welcome companion and friend. Her task was to bring ideas for sprucing up the house—not cleaning, but redecorating. After I have traversed the meaning of life through my quilts, all I want it to make tab-top curtains. Nothing else. No existential reading, no deep thoughts, nothing beyond a 3rd grade level. So Stephanie and I took off "driving Miss Daisy" to Calico Corners to look at fabric samples. Then there was a bit of a day trip to Manyunk (that was for Stephanie-remember she lives in Syracuse). Then we sisters sat with catalogs, poring over each page, speculating, looking at paint chips, and coveting. Nothing may come of it, but it did help to get my right brain working somewhat. The left brain is totally out of whack. Regretfully, Stephanie could not stay with me forever, and drove back this morning to get all three of her guys ready for school. Walter is beginning Kindergarten, and claims that he, as well as his brother William, are "doomed!".

It was interesting to go public with my new cancer look. My friend Kellen had jaunted off to Paris with her daughter this summer and brought back a stunning beret (for fall), but also a magnificent turquoise paisley Liberty scarf. That was my head covering choice of the day, and was it fun to wear. I might even try it when I have hair again. Beats a bad hair day.

Thursday Greg and I return to NYC for check-in with Dr. Schuster. Am assuming all is well, but want to hear the CURE word again. Greg had a good time with his book show in Baltimore—hard work but fun—and returned last evening. This morning he was out at 5:00 to go to the shop to get the coffee going. His customers have missed him.

Tonight we will meet with the Psalmists for the first time since we got out. Spirit will fly.
Victoria

Thursday August 29 Day 58 (Victoria)
Today Greg and I traveled to New York Presbyterian to check in with Dr. Schuster and came back with good news of strengthen counts and good progress. I am able to cut down on some of the medications, as the GVHD skin rash is lessening considerably. We go back in two weeks, which is a nice long leash. Greg and I are more or less basket cases after the trip. New York is fascinating, but not necessarily from gridlock.

With the encouragement of our steady and optimistic course toward healing, alongside learned that two of the patients that had spent the summer on the BMT had died last week. Both particularly sad and poignant situations--two young men in their late teens who required matched unrelated donor transplants and developed graft vs. host disease. Because of the isolation of the rooms, I never really got to know these young men and their families. Greg, however, became close to the families and checked in with them frequently. We had so hoped for recovery, and came away with a sadness and acknowledgement of valor on the part of the patients and their families. This bone marrow transplant stuff may be a cure, but one cannot underestimate the potential cost. I remember pressing Dr. Schuster for THE CURE, and, in his sobering response he cautioned me, 10 go in 8 come out. Our minds are never far from the patients who go on to BMT, counting days, assessing blood counts, looking for virus, bacteria, fungus, enduring life-changing events. One cannot do it without God's help, enacted through the care and nurture of God's people.

Hope the summer is winding down peacefully for our loved ones as we go back on the fast track.
Victoria

Sunday September 01 Day 61 (Victoria)
We have made it to the month of September, and all sorts of things begin again. This season is, for me, of gentle healing, of continued retreat from crowds and action, of potential harms, and OF ALL SORTS OF THINGS I WOULD WANT TO DO. There is a major disconnect between the way I lived my life before the transplant, and now during recuperation. Sometimes as I am waking up I forget what I have been through and start to plan a nice, ordinary non-stop day. Then I move, and realize that I am not living in a strong, healthy body right now. It takes priority. Without question. So my mind tries to intervene, perhaps having a flashback to a NIKE commercial "JUST DO IT!!!!!!" No way, body says "NO". So, what to do with this distance the things I would like to be able to accomplish, and the reality that I need to devote time to restoration of health? I discussed this with a close friend who says that I am already well acquainted with the action side of my life, and invited me to get to know the slower side my healing body is offering me right now. In other words, the idea is to get to know my altered existence as an actor would. I am able to know what it is like to be frail, to be careful of steps, to measure distances, to be alert to potential harms. To take time to mark my path carefully, methodically; to navigate it well and completely. This orientation has helped me to avoid frustration that I will not be back to par for many months. In the meantime, I will immerse myself in what it is like to do each thing with care and deliberation. It has become easier for me in the past few days to pick up a book, sew a few stitches, and help with household things. The inertia in the beginning was incredible, and I would spend untold amounts of time thinking about what I would do if I could only do it. As I have had a chance to heal in this wonderful environment that was created for me for my loved ones, I have increasingly been able to slowly start new sources of comfort.

Last evening Greg suggested that we go to Border's when the store would be less crowded. He has become a major reader over the summer, and wanted to try out new authors. As a couple we have not been out together very much with my cancer patient look. I have to wear a mask, gloves, and should wear some head covering. I try to act as though this is absolutely nothing out of the ordinary, and overall that is how it feels. But I wonder how people perceive Greg, the healthy partner? Do they know that He is the survivor too? Do they have any idea how deep is reservoir of love and caring for his partner? How he really walked every step with me, witnessed so many procedures, stayed present, stayed, stayed, stayed? When I look at my dear husband now, I see pure selflessness, a genuine goodness and positive regard for people that I have always found extraordinary in him. This illness has had the effect of softening and strengthening the relationship. How easy it would be for Greg to actively bear resentments for the losses we have incurred as a result of his wife's illness, but he does not, he actively bears the reality that he will care for me, no matter what. I am once again reminded of the great promises of marriage, and that it can be done. I hope you all are enjoying the gentle rain and the last sweet weekend before all gets going again.
Victoria

Wednesday September 04 Day 64 (Victoria)
The first and only words that come to my mind as I wake up in the morning is hat I AM ALIVE. To have come to day 65 is unimaginable to me from where we all started, and so to be alive is gift enough. I am learning to watch some of the ways I think, plan, and do things, and I realize that I am a very different version of what I was before. I have to be methodical about everything—checking, re-checking; taking on some of the characteristics of someone who is careful about everything. It is interesting. Another thing that has happened is that I am not nearly as sure of myself as I was, and am learning some collaboration. That's a good thing. It's all a part of yielding, I think. With this disease and treatment, I literally had to turn myself over in complete trust, and I was brought through. This "learning to fall" has been one of the most difficult, but instructive, aspects of getting through the BMT. Trust.
Victoria

Friday September 06 Day 66 (Victoria)
Friday evening is upon us, and that first whirlwind week of September is behind us. I hope that the weekend holds some leisure time for those wearied by the pace. Last evening Joanna and Jordan came back to our home for the weekend and covered their textbooks with brown paper. Does that bring back memories? Think of the things we doodled on those book covers? Every Friday for me in an IVIG (immunosuppressant) day. This drug is given IV over a 4-hour period while I am under the profound influence of benadryl. The home care service is excellent, and my nurse, Helene, is a lovely, fun person. But it does take the day, and some thereafter as I continue the foggy trails in my brain.

One of the things that is coming back to me is that I am able to read more than a catalog, and have ventured into some books and journals that have short essays. That, I can manage. Last week Greg and I ventured to Border's in the late evening (less crowds), and I picked up a quarterly called "Parabola", Myth, Tradition, and the Search for Meaning. The issue is about GRACE-Gifts bestowed from Above. The article that first drew my attention was "Fierce Grace", An Interview with Ram Dass. FIERCE GRACE. That is a phrase that strikes a chord with many of us who have been challenged by curve balls, not interpreted as gifts, bestowed from above. Ram Das had suffered a massive stroke five years ago, and is paralyzed on the right side. He states, "You know, this is not who I thought I was going to be, because my vision of myself, old, didn't have a stroke in it. If I think about who I thought I supposed to be, or who I used to be, it brings up great suffering. But, if I just rest in awareness, I am in bliss." Boy, I wish to get to that blissful place, too, in the face of changed expectations. But what is this FIERCE GRACE? He says that he would rather have had the stroke and experienced this grace. He says that fierce grace brought him closer to the "emptiness"--the creative source of all. "It didn't matter what my image of myself was, what it was supposed to be, and it doesn't matter how the stroke changed all that. I'm going for broke here. The spiritual trip is a serious business. And those of us who take it too lightly will receive "fierce grace". I am struggling with the ways leukemia visited my life, and how it has altered almost every expectation I had for how I had foreseen my life to be. The reformulation, the experience of "fierce grace", I pray will be like a refiner's fire, and bring my life into a purer, generous place. My friends and family, you have traveled with me through some really tough places, and I would like to ask you to help me think about what happens when you are faced with radically different expectations of what your life would hold? Is it grace? Fierce grace? Welcomed grace? And how does one get to that "blissful state" of resting in awareness?
Victoria

Sunday September 08 Day 68 (Victoria)
This week our thoughts dwell with the anniversary of 9/11. I am overwhelmed with the magnitude of information, and have found most strength and comfort in the sermons and reflections of my cousin, Rev. Dr. Stephen Paul Bouman, Bishop of Metropolitan New York Synod; Evangelical Lutheran Church in America. He has written from his heart, soul, and experience in NYC over the past year. You can find his reflections, as well as other events, litanies, and prayers on the Synod's website: http://www.metronysynod.com. I really commend this to you.
Victoria

Sunday September 15 Day 75 (Victoria)
I made a quilt before being admitted in June of 100 squares of fabric, each different, to be a calendar. It hangs in the front hall now, and every day I move an angel to the next square. We are getting there! Now to 75. Day 100 is not occasion yet for celebration, or for a party, as I am confined to not more that 6 people at one time until the 6 MONTH mark, which is on New Year's Day. Day 100 is a day for a sigh of relief that I am out of the major danger zone. Put New Year's Day on your calendar—THAT is when the mask comes off, the dog comes home, the party starts.

Grace upon grace has been showered on us. The community of St. Martin-in-the-Fields continues to support the healing of our family by providing meals on our busiest evenings. The assurance that we are well nourished physically helps enormously, and we are grateful for wonderful food and hospitality brought to us. The community is astonishing in its generosity of spirit.

On Thursday evening the St. Martin's choir had its first rehearsal. I LOVE BEING IN THIS CHOIR, and not being able to be there has been a major sacrifice in this bone marrow transplant deal. While I was pining, Ken, the director called and I listened to Sunday's anthem. Beautiful. They are off to a great start. I will need quite a bit of remedial work as all my muscles are puny now, but Alyson is capable of wearing almost any hat or any voice part, and I hope can do some major therapy.

You guys, I hate to complain, because, after all, I AM ALIVE, but these medications have caused me to grow downy hair all over so that I feel like a duckling. My ankles are swollen, my face is puffy, my hair is growing in strange patterns, and my knees hurt. I am complaining. Now for the reality check-I am doing great post transplant, and am alive, after all.

I find that when I go out I wear the full regalia of mask, scarf, gloves, people don't recognize me, and I never quite know if I should explain who I am and how I got this way, or to remain on the periphery of things. It is much harder to interact with ease on a social level with altered appearance, and also the reduction in visual cues (like a covered face), and I am trying to figure out how to cope with that. Another "curiosity" to investigate.
Vic

Thursday September 19 Day 79 (Victoria)
We are making it day by day in all our lives, aren't we? I am still marveling to have the day, although I am going to complain about what it may involve post transplant. It looks as though the effects of prednisone show up as time on the drug increases, and so I continue to shake; there is not a small amount of edema in my ankles (I look at them and can't believe these elephant ankles belong to me), and then there is the peach fuzz. It is also near impossible to sleep through the night, although the Ben and Jerry's breaks help. So I am in an alternate zone, functioning. The good news is that I am happy, content, and my right brain is doing some pretty neat creative things.

As many of you know, we belong to St. Martin-in-the-Fields Episcopal Church in Chestnut Hill, which distinguishes itself in many ways, including proclamation of the word—preaching. As I was preparing for the transplant, I listened carefully to each sermon. The clergy are, without exception, insightful, spirit-driven and scholarly. I remember one sermon in particular, preached by Rev. Dr. Pamela Cooper-White in Lent, March 17, 2002. She preached about the raising of Lazarus from the dead, and connected it with how we experience continual littler deaths and resurrections. The transformation from a little death to a resurrection does not involve only joyful growth, but also grieving, anger and regret. This means for me that though I hold up tremendous gratitude for having been given a cure and more time, that my return to life is to REAL life, with all of the frustrations, conflicts and problems we all experience. A cured bone marrow transplant patient is not exempt, despite the price paid.

Let me quote Dr. Cooper-White, "When Lazarus was raised, it was back to THIS life. Notice that the story doesn't read that Jesus somehow showed the sisters and the assembled crowd a vision of Lazarus sitting on a cloud in heaven, disembodied, talking and playing harps with the angels. This story is not a story about immortality of the soul, living eternally in some other dimension. No, this story is about life being restored in its fullness in this life, this dimension. Like the dry bones in the desert, the power of God is displayed in both these scriptures as fully in-the-flesh, powerful and glorious enough to clothe even long-desiccated bones with flesh again, and strong enough to make even a dead man wake up with a gasp of new breath, blood circulating once again, to rise up out of his grave and walk back into the world of the living. The whole person of Lazarus was renewed and brought back to life—body and soul."

This sermon was a reminder to me that life changing events occur, and that the initial return (has not been for me) is not to just a blissful state, but to the ongoing rhythm of life's losses and "little deaths", to abundant joy, life, contentment.
Victoria

Saturday September 21 Day 82 (Victoria)
Still puffy, still wifty, still content. I was given to much complaining last week as I began to count all the losses I had incurred along this CML path. The one that really did me in was that we had some ominous news about MY DOG TUCKER! The dog I am pining for, waiting for, missing terribly! As you know, Tucker is staying with Jim/Kathy until they move in late October, and it had gotten to be time for Tucker to have a good grooming. Deb discovered that Tucker had alot of bruises on his belly and neck. Greg took Tucker to his vet (telling her that the owner had just been through a BMT to add to the drama) and some blood work was started. It turns out MY DOG HAS AN IDIOPATHIC BLOOD DISORDER! Now I am really feeling like Job. As the week went on, the outlook improved, and it looks as though this can be cleared up with prednisone.

We will just have to wait and see. But, do you believe this? How much can a person take?

Since I complained so much last week about my greatly diminished self, I it occurred to me that there are some really pretty cushy things about recovering from a bone marrow transplant.
-less (no) time on hair preparation
-no haircuts
-professional wardrobe not required
-no cocktail parties
-no shopping at malls
-no mass transportation
-food just isn't the big deal it used to be
-no guilt at hanging up on phone solicitors
-impeccably clean house (that is a first)
-no snotty nosed kids
-no plants to water, pets to feed
-current fashion? uh
-with mask, gloves and hat, one can go anywhere incognito
-our children's friend's families take them in as if they were their own.
-day and night become interchangeable with altered sleep cycles.
-an introductory course to retirement home living.
-inability to navigate remote control for TV
-no cocktail parties

Just look for the silver lining. With 18 days to 100, I send my warmest regards.
Victoria

Wednesday September 25 Day 86 (Victoria)
According to my quilt calendar, we are at day 86! Had a bit of a scare the last few days—some unexplained bruising, and more fatigue than normal. I had hoped to dismiss it, but my husband catches me at everything, so I called New York Presbyterian who advised some blood work. This morning I went to Fox Chase—which is a great place! -and had a CBC done. Looks like the platelets are low, but not low enough to require transfusion. Ups and downs are to be expected, but unsettling. We are looking forward to a visit by Stephanie, Gary, Walt and William this weekend. They will have deluxe accommodations at John's so that preschool/kindergarten germs won't run rampant in the house. We will cocoon the boys in bubble wrap when they are here. At Day 100, we will be closing the Caring Bridge Site. It has been a wonderful place for us to go for insight, support, prayers, ideas, really funny stuff, and great communication. Victoria

End of present journal