Bonnie Recovery

A transplant in my future?

The bone marrow transplant folks at Dana Farber have identified 8 records that look like good matches in the bone marrow database of 8 million.  This is encouraging since we found no matches two years ago.  It seems that for a person with a Scots-Irish background, I have unusual elements in my HLA.  These elements may be a legacy of my Native American great grandmother or who knows what in my lineage.   But thanks to millions more people in the database, we are now finding matches even for hybrids like me.

Dana Farber is now contacting those “matches” to see which are real, living people willing to donate stem cells.  People who are willing and able to donate stem cells will then need to have blood samples sent to Boston for re-testing.  The person who is a match will have to get injections for a week and then have those stem cells "harvested."  For a more detailed description of the process, see the link below.

http://www.marrow.org/DONOR/steps_of_donation.html

The minimum time from now until we would have stem cells from a "live" donor is 4 weeks. 8 weeks is more likely and 3 months is possible.

If we are able to find and get stem cells from an appropriate person, I will be able to have what is called an allogenic transplant.  For this, I will go into the hospital for a mild regiment of chemo (four days) followed by a stem cell injection.  I could then come home (total in hospital could be 9-14 days).  After injection, the healthy donor stem cells then begin a battle of cells inside me, which hopefully results in the donor cells killing off my marrow and replacing it.  It will be several months for my immune system to rebuild completely.  All of this could be less strenuous than the massive doses of chemo I had before.

And of course all of this depends on turning one of those database matches into a "live donor."  If we can't find that willing person, then there is almost a 100% probability of a match in the cord blood bank. However, it takes longer to recover from a transplant using cord blood; it will be better if we find that so-called live donor.

Daniel and I feel quite optimistic about this route.

Once again we find ourselves in a situation in which we are blessed with the Amazing Medical Science Machine.  As fantastic as medicine was three years ago, it has made giant strides since then.  This whole route of “mini-transplant” was only experimental then. The databases are bigger; the drugs are better; the doctors more experienced. 

You may have heard me describe how I understand the nature of “miracle” or divine action in our world.  Theologists would call it a “non-interventionist” perspective; that is, a view that divine action does not require God to intervene beyond natural law. Instead, I believe that God created us and everything that is, and because of this, God acts through God’s creation, with improbable acts which nonetheless have natural causes.  The miracle is in how we share the blessings of our improbable outcomes.

We are here again face-to-face with the Miraculous.  Life for me now is unlikely.  But then, as any evolutionary biologist would say, ALL life is unlikely.  And here we all are.

If you want to read more about stem cell transplant and how you might get listed as a potential donor, see this website.

http://www.marrow.org/ or http://www.marrow.org/HELP/join_the_registry.html

Every “live donor” increases the potential life for another.  That is a miracle.

The crying need is for non-white donors. Native Americans who have my condition have very little possibility of finding a donor.  I understand this situation results from two problems: that there are so few in the gene pool and that there is a low percentage of donors among the relatively few Native Americans.  Hawaiians similarly have a very small donor pool.  The situation is only slightly better for Afro-Americans, Latinos, and Asian-Americans.  Anything you can do to be an agent of the Miraculous by getting registered and by encouraging others to register, especially in those under-represented groups, will add life to the world.

No Snow Christmas!

If this is your first visit to the BLOG, welcome.  The message below (A transplant in my future) has some good context material including some details of the stem cell transplant I'm hoping for in January. 

I'm using the "What's Happening?" category for posting about my medical condition and generally, well, what is happening with me.  To find out the lastest info, check the latest post in this category (which will be the first one listed).

Today (12-14-05) I saw Dr. Richard Stone, the hematologist at Dana Farber. He said it would be OK for us to go to North Carolina for two weeks.  We are thrilled with the news that we will be with Jennifer, Scott, Zac, and Lucas for Christmas.  Looks like a No Snow Christmas for us.

We will return right after Christmas.  We are waiting until the 29th for that marrow biopsy.  Hopefully by that time we will have identified a "live" bone marrow donor.  My blood levels continue to drop slowly, but my energy level is good and I have no other symptoms. 

Now that my classes are complete, I am turning to full time prayer and family.  This is a proven remedy for whatever ails me.

On a lighter note, here are some of my joys this week:

Our Jackson Rud (aka the "Cambridge Grandson") will celebrate his first birthday on his Mom-Debrah's 27th birthday this Sunday (12-18).  Because we will be gone, we got to celebrate with them last night. Jack is taking his mom and dad to California for Christmas. Note Jack's first haircut in these pictures.

Last weekend my EDS friend Sue Crommelin and I went on retreat at Emery House, the rural retreat center of the Society of Saint John the Evangelist. It was a weekend of praying with Isaiah and Psalms relevant to Advent; mostly it was a silent retreat.  I felt that I was making an important transition to deeper prayer in that wonderful setting.  The "Cowley Brothers," as some of you know them because they are Cowley Publications, provide exquisite hospitality and a unique invitation to closeness with God. Here is a picture of me showing six of the hermitages available to guests who can enjoy there a cozy stove while they are hermits.

Love to you; thanks for journeying along with us,

Bonnie and Daniel

My 2002 Medical Adventures

Some people have asked me what happened when I was first diagnosed and in the hospital.  We had a weblog at that time thanks to graphics and set up by our friend Lyn Bishop, posting by my son Ron Johnson, and most important writing done by Daniel.  Here is a link to that history: Download 2002_bonhosp_website.doc

Life's a Beach

We drove from Boston to Wilmington, NC on Friday (16th), though we didn't quite make it in time for Jennifer's birthday dinner.  We made up for that by staying all weekend and only arrived here at the beach late Monday night.  I'm feeling energetic.  I've had some wonderfully healing experiences, for example, Zac running to jump on me and my holding Lucas to my chest for a four hour nap (mostly but not exclusively his).

This morning we woke up to a shining sea.  I'm looking forward to some fine times doing nothing but rocking, talking, praying, and enjoying God's ocean.

I've started readings Ignatius.  I'm humming with the observation with which George Gans opens his summary of Ignatian sprituality: "...he saw all things both as created by God and as the means by which men and women could make their way back to God."   

First donor possibilities

I learned today that two people of the eight database matches have already had their blood tested and sent to Boston for further testing at Dana Farber.  What a Christmas miracle that two people have already made a total stranger a priority at this busy time of year.

It will take about ten days for further testing to determine if either of these people are a true match.  If one of these people is a match, then it will be another couple of weeks for that person to get a full physical checkeup and then to go through the "conditioning" procedure. 

As I contemplate how grateful I am for these people, I am also sad at the number of people who have almost no chance to find a match.  We need to expand the DIVERSITY of the Donor Registry.  Check out this link:

http://www.marrow.org/cgi-bin/NETWORK/rec_group.pl

Here is a bit of what it says about the need for diversity; this link has lists groups that are actively recruting underrepresented populations:

"Marrow and blood cell transplants require matching certain tissue traits of the donor and patient. Because these traits are inherited in the same way as hair or eye color, a patient's most likely match is someone of the same race or ethnicity. To improve the chances for all patients to find a match, more Black and African American, American Indian and Alaska Native, Asian, Native Hawaiian and Other Pacific Islander, and Hispanic and Latino potential volunteer donors are needed."

Christmas Time

Christmas has always been special for me though not in the usual way.  Since I was a teenager, I haven’t always enjoyed giving or getting gifts.  When I make too much of it, it can feel like pressure.   Daniel and I have a limited practice of Christmas gift giving.  We prefer to give whenever we find a gift that seems to need giving.

Reading Frederica Harris Thompsett’s Courageous Incarnation In Intimacy, Work, Childhood, and Aging (published by Cowley, but now out of print) helped me to understand why Christmas is so special to me as an Episcopalian. Frederica provides a beautiful and practical articulation of how we live with the Incarnation everyday and celebrate God in us at Christmas:

Anglicans are recognized for the emphasis and attention they give to the Christian doctrine of the Incarnation.  This indispensable Anglican tenet is built upon the New Testament witness of a God in Christ who came to live among us as God and as human. … As early as 1623, when Anglicans moved to the [Puritan] Massachusetts Bay Colony, authorities responded to this unwelcome group by forbidding the celebration of Christmas (p. 8).

Daniel and I had a great Christmas day, joining four co-grandparents and one great grandmother at Jen and Scott’s house.  When four of us weren’t on kitchen or Lucas-holding duty, we played baseball with Zac, who as usual told each of us what position to play.

Our friend Mary joined us at the beach house before Christmas; we had great conversations about our forty year friendship.  I can’t resist including this picture of our two-month old Luc flirting with her.

We were packing to leave the beach this morning when we realized that we could stay one more day and still make it to Boston for my doctor’s appointment on Thursday.  We had some big waves today. It was a blessing to get one more ocean filled day and one more beach sunset. 

HAPPY NEW YEAR TO YOU.  We are looking forward to a wondrous 2006.  Thank you for your prayers and your friendship this year.

Still Waiting

My season of waiting continues.

Today at our visit with Dr. Stone we learned that the first three potential marrow donors are not close enough for a transplant.  It was disappointing, but we continue to have options: five more donors to be tested and the cord blood option if we can't find a donor. 

The good news is that my blood levels are actually a bit better than they were two weeks ago before we went to N.C.  My absolute neutrophil count is actually above 500, taking me out of "severe" neutropenia for now. 

The best news in all of this is that Jennifer will come with Zac and Luc for a few days next week.  Holding my boys is sure to boost my white count.  Jackson (and family) will be back from their holiday in California, and the cousins will meet for the first time.

Speaking of Jackson, this picture of him was in the Boston Globe this week along with his mom.  The reporter who broke the story about Harvard's president Summers' comment last year that women lack the "intrinsic aptitude" that men have for science chose Debrah as the center of her year-later follow up story. Debrah continues her good work for women's rights and respect as well as for science and motherhood.  Check out the story here.

We are feeling grateful that I continue to be strong during this period of waiting.

And still waiting

This is a quick post to say that I'm doing ok.  Jennifer and her two boys were here for several days.  We got together with Debrah, Ryan, and Jackson a couple of times.  Daniel and I were in grandparent heaven. I'll post some pictures later.  I'm resting and fighting off a sore throat.  My next doctor's visit is January 11th.

Chapel

Yesterday I made it to chapel for the first time this year.  When people ask what it is like to be in seminary, I usually tell them first about chapel.  It defines the uniqueness of the seminary experience.  Classes and community life are not that different from other college experiences, but only seminaries and monasteries begin the day in common prayer.  I know that when I move on from here, it will be daily chapel with people I know and care about that I’ll miss most. 

I know what my values are when I choose to do anything other than attend chapel.  Last week, I’d intended to take Zachary to chapel with me.  He was most curious in asking why we have church everyday.  Yet, each morning the opportunity to spend time alone with him, cuddling while we watched cartoons, or fixing breakfast amidst his four year old questions, was enough of a heart-tug that I didn’t want to break the spell by going as far as chapel.  My cold this week has been so debilitating that I only made it to chapel on Thursday. 

On Thursday we have Eucharist at the 8:30 service.  It is our equivalent of a Sunday service.  We celebrated Martin Luther King Day.  This day was a modified service in which we read King in addition to a bit of Hebrew Bible and a Gospel passage.  Forty years after King’s call for wages that would sustain families, and we still are far from work that provides a living wage.

Work life is remote to me these days, and I feel especially grateful that we are able to take this time to attend to my health and also to enjoy seminary without the necessity of work simply because we had good wages for so many years.  I’m keenly aware of our privilege.

I saw Dr. Stone on the 10^th, a day earlier than expected, because I was running a fever with this cold.  They did extra blood and other tests to rule out systemic infections.  Dr. Stone assured me that I just have a cold.  We also learned that they are looking at more database matches for blood donors; they are expecting blood samples from ten more people.  My next appoint is in two weeks, no exact date set yet.  If there is no donor by then, we will proceed with a transplant using cord blood. 

Birthday Today

It’s a sunny 42 degrees in Boston today. This the first birthday I’ve spent in the north since 1989 (last year we were in North Carolina). I can remember many years of birthdays through the 1960s, 70’s and late 80’s when January 20^th would be a snow day. I’d often be off work and could spend the day by the fire looking out at mounds of snow. But this year it’s been as if the warmth has lingered along with my health. The calendar says that we should have mounds of snow now, just as my prognosis in October indicates I should be hospital bound and very sick. And here we are the sun and I, both bright and shining.

On days like this I remember how my mother used to call me to get out of bed: “Rise and Shine, Bonnie Jean.” I didn’t know until coming to seminary that she was quoting Isaiah:

¹⁹The sun shall no longer be
   your light by day,
nor for brightness shall the moon
   give light to you by night;^*
but the Lord will be your everlasting light,
   and your God will be your glory.
²⁰Your sun shall no more go down,
   or your moon withdraw itself;
for the Lord

will be your everlasting light,
   and your days of mourning shall be ended.

Tripping

This morning I woke up with more energy and enthusiasm than ever.  And then in the early afternoon the realization that tomorrow is “doctor day” hit me.  Both Daniel and I took long naps that we have come to recognize as anxiety naps. 

I have talked with the person doing my donor search and also the transplant coordinator.  They have yet to identify the “perfect” match, though one is very close.  They will be meeting on Thursday to discuss whether that person is really close enough.  It may be that we will be carrying on the search for another few weeks.  I am feeling good enough (when not thinking about tomorrow’s doctor visit) to believe that my blood levels will be up and that my health will good enough for a few more weeks.

I had a great call from a California friend this afternoon.  She asked if I’m anxious with all this waiting.  I’m not usually.  Right now I am leading such a wonderful life.  Friends come over for conversation and music.  I’m very much engaged in getting music put onto my new iPod (more about that later).  I certainly do not want to waste these beautiful “extra” days worrying.

Spring term starts next week.  I’m enrolled in an online course called “Life as Pilgrimage.”  The instructor leads sacred trips.  See http://illuminatedjourneys.com/    I am eager to get through this time of confinement so that Daniel and I can start to travel again.  Right now, I’m enjoying virtual travel.  I can remember ten years ago being very eager for High Definition TV so that I could go places I wouldn’t or couldn’t otherwise. And now I’m finding these virtual trips to be everything I imagined they might be, at least for someone like me who can’t move so easily. I’ve watched INSIDE PASSAGE, which is showing often on PBS’s high definition channel.  I sit in my platform rocker and enjoy the scenery and the commentary and I’m glad that, at least for now, I don’t actually need to move my body to do the Passage.  And I know when I do actually get on that Inside Passage trip, I will enjoy it more.

As spring term starts, I’m thinking back to last fall’s courses.  Seminary is a trip in its own way.  In one five page paper, I took on the question of God creating the world, and in the process, explicated my own creationist theology.  In another course, I was asked to write about the task of establishing and honoring pluralism and in doing that to articulate “Where is God in this work for you?”  In that paper I was finally able to find an answer for myself to my question of why The Incarnation came 2000 years ago (not earlier or later, as far as we know).   The great joy of seminary is the opportunity and excuse to do “theology in five pages or less.”  I’m attaching these two papers here not because they are great theology, but because they engaged me in thinking about the nature of creation and the mission of Christ… and I thought that you might find in them an invitation for you to do that too.

God and Creation Paper here Download godcreation_paper1_online.doc

Foundations of Chrisitan Praxis: Pluralism  is here:  Download bj_foundations_3_online.doc

(note the foundations paper is a big file because of one big picture in it).

One more reprieve

Today was doctor day and once again my pre-visit anxieties had no foundation.  My blood levels continue to be dropping very slowly.  I’m back in the “severe” neutropenic range and also anemic.  But I don’t feel any effects from these conditions, showing once again how much attitude and outlook have to do with “feelings.”  I continue to be in sufficiently good health to wait until we see if we can find a live donor.  And for me, I am enjoying this time of good health before subjecting myself to all those medications and procedures.

I learned more about the nature of my tissue anomaly.  I had expected that the unusual factor in my “HLA” (tissue type) was from my Native American great grandmother.  Actually, they have found that very unusual typing in some German samples.  I have never heard stories of any German ancestry.   Daniel and I have an expression:  “well, well, well, you can never tell.”   This is a lesson that shows the need for more people (under 60 and healthy) to be in the Blood Marrow Registry, even if they are white anglo-saxon protestant. Join the Registry Info Here

The plan for my treatment is becoming clearer. Looks like I am quite likely to have a round of “induction chemotherapy” before a transplant regardless of whether the transplant is from a live donor or cord blood.  Induction is what I had three years ago.  The goal of the treatment is to put the patient into remission from leukemia.  It means that I will check into a special section of the hospital and will have one or two “central lines” installed: these are tubes put into veins (or arteries) in my chest.  While it sounds gruesome, actually it means I get relief from poking my arms for blood tests.  The purpose of a central line is to allow them to administer chemotherapy in a controlled way.  I’ll get four days of powerful chemo that will lead to my losing hair. I will stay in the hospital for 3-4 weeks after the chemo and get blood and platelet injections until my own bone marrow starts to build blood cells.  I have to be in the hospital for the doctors to monitor me carefully for infections that come from my own body.  If all goes well, I’ll then come home for a week or so additional rest and recuperation.  I’ll then go back into the hospital for another round of “conditioning” chemotherapy cocktails.  I’ll get four days of that and then the injection of stem cells from a donor or cord blood.  If we have donor blood I won’t be in the hospital very long, but will be longer if I get cells from cord blood.  Eventually I’ll come home and will have six to twelve months of recovery during which I will build up all the “normal” immunity to life once more.   The best news I got in all this is that they no longer restrict people from eating fresh fruits and vegetables as they did three years ago.

I had not been expecting to have induction therapy before a transplant.  However, I know from the reading that Daniel and I are doing that people who are in complete remission at the time of transplant have a better probability of the transplant taking over their body and producing a cure. 

My next appointment with Dr. Stone is February 8^th.  He said it was ok for us to go to NC. 

I have an appointment with a nutritionist tomorrow and will also tour the hospital unit where I will be spending time.  Looks like that time will likely be late February or early March to sometime in April.  I’ll be on a high floor, probably the 16^th and so I should have a beautiful view of spring arriving in the Back Bay.

We leave by car for NC around noon tomorrow. 

Next major postings are likely to be from the BEACH and likely will be around Feb 1.  I am working on a written version of a sermon I gave at the healing service in the fall.  And I have some meditations about stained glass that I want to share. 

Wonder filled waiting

We are staying in North Carolina one more week, returning to Cambridge for my next appointment on February 15th.  We have yet to identify a live donor or a cord for the transplant.  And I continue to be ok.  We are indeed just getting settled in here at the beach. 

As if to celebrate our staying a while longer the sunset was extraordinary tonight.   

We kept both Zac and his baby brother for two days this week. At three months, Lucas isn’t ready to spend the night away from Mommy (or maybe it is Mommy not ready to have Luc gone).  I took the 7 am ferry to meet Jen at the landing on the other side and bring the boys back to the beach house.  They stayed all day and I took them back on the last ferry and spent the night at their house then brought them back on Thursday morning.  Zac has been watching Polar Express on the DVD in the car.  When Lucas decided he was too hungry to wait for food, Zac fed him so that I wouldn’t have to get out of the car while we were on the ferry.

Lucas began to reach out for his mobile toy; this is a big  milestone for a three month old.

Daniel took Zac out to throw some rocks in the water.  Zac loved chasing around in the water.  It was a joy to watch this little guy taking on the ocean, determined to “surf.”  Here is a 20 sec movie of Zac and the beach. 

.Download zac_beach_feb_652.MPG

We now have several “Zac Free Days” that are giving me time for other kinds of prayer and also participating in my online course.  Daniel has set up the desktop top computer he brought down here and has begun to rip his CD collection.

Each day feels like the marvel that it is.

Our Superbowl Pre-Game Show

The Sunset!

Hope that you are enjoying the game.

Inner Pilgrimage

I’m sitting looking out at a churning ocean, calmer than yesterday, but far from the “lake Atlantic” we have had for most of our time here in N.C. I’m thinking of all our friends in N.E. with two feet of snow. We are happy that we don’t have the necessity of driving in it. Somehow it seems like a metaphor for our life right now… we are escaping the storm, but mindful that we are on the journey and journeys inevitably have storms sooner or later.

Back in November I was (foolishly) eager to get on with the treatment and the hospital. It was not that I was looking forward to the transplant itself, nor even to a “cure” and the vista of life that a “cure” would open for me. Rather, it was that I was looking forward to being on the pilgrimage.

Daniel’s Birthday

It was quiet (compared to mine), but Daniel reports it was one of his best.  I’ve put a photo album on this BLOG called “Daniel’s Birthday” with pictures of the party, and also some pictures of Zac with one of his GrandBee’s (four) trains. Check out the link on the right under the calendar.

We celebrated in many ways.  Daniel got phone calls from distant friends.  We toasted that we are able to stay at the beach until Feb 25^th.  We had Jennifer, Scot, Zac, Luc, and Scott’s parents Linda and Ernie for birthday dinner on Saturday.   

Daniel cooked incredible London Broil and short ribs; amazing stuff.

Zac and I went shopping for the book that Daniel requested for his birthday.  Zac blew up twenty balloons to decorate the house.  He wrote a special card for his GranDan and helped me wrap packages.

Daniel made two requests for his birthday: a copy of The Elegant Universe and that I would post sermons I’ve done over the past three years onto the BLOG along with description of the context of those in my illness and recovery.  I’ve been working on the second request and will be create that ‘sermons’ post this week.

In the meantime, we are enjoying the sunsets, quiet, and mostly our love for each other, our family, and our wonderful friends.

New Appointment February 27th

Yes, we are still in NC and you won't see any pictures of us packing to go back to Cambridge tomorrow.  We got the OK from my hematologist at Dana Farber to postpone our Feb 15th appointment and stay here for another couple of weeks as long as I have no fever.  My next appointment is now Monday, Feb. 27^th. 

Here is a picture of what this is all about.  These are bone marrow stem cells.

I’ve also been in quite a bit of communication with the nurse who will be coordinating various services once I get into the transplant process.  She has been my primary contact with the woman managing the search for a donor.  They had eliminated all the live donor possibilities in the Registry.  My son Ron was typed when he was in Boston.  I got his typing this week and it looked very close to me.  Unfortunately, close is not good enough.  He does have the very rare antigen that I have, but he has two antigens that are not close enough.  We have now typed Jennifer and her husband Scott; in part, this is to see if Jen might be close enough, but mostly it is to estimate whether the umbilical cord they saved from Zac might be close enough.

There are two bits of good news.  They have found ten cords in the 40K stored for the registry that appear to be close enough.  Recall that cords do not need to be exact matches like live donors.  I don’t think that the bone marrow donor committee has yet discussed these. 

I got a very enthusiastic message from Deborah, the person in charge of the actual search, that a new potential donor had “popped.”  I don’t know the background here, whether this is a new person in the database, or why this donor has just shown up.  It is the first time Deborah has ever sent me email directly, and so I’m assuming that the match on paper is an exact one.  She has sent out the message requesting blood samples for an “urgent” confirmation.

My doctor is out of town the week of the 20^th of February, and so he said I could stay until the following week, but he instructed his assistant to make my appoint early Monday morning the 27^th.  This means he wants to see me as soon as he gets back.  My appointment is a 9am.

The bone marrow donor committee at Dana Farber should have time to discuss and recommend a donor direction. 

Below are two more postings I've made today.

California ... trip cancelled

This is an edited version of the excited announcement I made about what we expected to be a trip to California.

This is a special view of All Saints' Episcopal Church in Palo Alto, our home church.  The picture on the right shows the special redwood fence opening to the sidewalk along Waverly St.  The picture on the left looks into the garden through an opening in the shape of a cross. You see a Japanese style garden created with California native plants.  I love this garden.  It was created while I was in the hospital in 2002.

When I heard from Margaret Irwin, who was our rector at All Saints', that she and her husband Paul were going to Califormia for what the Episcopal church calls the "institution" of a new rector, we began to think, "why can't we go too."

And, we almost made it. But TRIP NOW CANCELLED. 

Our congradulations to the new All Saints' Rector, Ian Montgomery.  All of our All Saints' friends who will be at the "Celebration of New Ministry" in Palo Alto on Wednesday the 22nd:  We are there in spirit, and we hope to be there in person by the end of the year.  Congradulations on this wonderful transition.

SO, FRIENDS IN CALIFORNIA, we will miss seeing you.  Write us, call us, Skype us.

Where in the world are Bonnie and Daniel?

We intended to be brave and chance one more trip to California.  We even bought the tickets.  But today we decided that we should not risk that.  I had a “slow day” on Friday with very little energy.  I wouldn’t want to get all the way to California and then be so, well, slow.

My next doctor’s appointment is on March 1.  We expect to be here in N.C. until just before that.  If my doctor has no reason for us to come back to Cambridge, we may not go back even then.  We continue to pray that there will be a donor and that we will leave here joyfully.  And I would love to be back for Ash Wednesday. 

Some people have asked just where we are, and where is the ferry that we take to our daughter, Jennifer’s house.  Here is a map on which I’ve indicated with a brown dot the location our house on Oak Island is and also Jennifer’s house in south Wilmington.  You can click the picture for a larger version.

We drive to Southport and ride for 30 minutes across the mouth of the Cape Fear River.  The small NC map has a red star that marks Southport.  We then take rt. 421 north toward Wilmington, and turn to Jennifer, Scott, Zachary, and Lucas’s house which is on the Intercoastal Waterway.  Our beach house faces due south so that this time of year we see the sun rise and fall over the ocean. 

Here is a picture of the sun RISE from the ferry.

The sky is sunny and the ocean calm today.  Our life here is very quiet. We are with other people mostly by computer and now with Skype.  We are practicing virtual presence.

Morning on an Ocean Porch

As I predicted in my last posting, we did not return to Cambridge for a March 1 appointment.  We are still at the beach house.

The search for a donor is in a critical stage right now.  As of Friday, they had found only one of the two cords I'd need for a cord transplant, but that search continues.  We've ruled out Zachary's stored cord as a possiblity. They received blood samples from that donor the identified on Feb 8th as potentially a full match.  It will be another week before all the tests on that sample are complete.  As the result of some papers presented at the bone marrow conference last week, there may be more reason to believe that the donor who is a match except for one antigen which is a 0301 to my 0315 might be close enough.    The bottom line here is that we are close to a conclusion about a donor but have necessary tests outstanding.  When the tests on the last donor are complete, I believe the transplant team will assess the options and make a recommendation.  This will likely take place at their meeting on March 9.  Sometime after that we will return to  Cambridge.  But all this continues to be very tentative.

I continue to feel pretty good.  My red blood and platelet count are now well below the normal range, but not critically.  White blood count actually went up last week.  I've gone from a mood of "waiting" [appropriate to Advent] to a period of self examination and feeling God's blessings.  I have begun fully to do Ignatius' Spiritual Direction with Ken Ireland as my "giver of the exercises."

 

Today I've gone on a "porch pilgrimage."  After attending an Ash Wed service at 7 this morning, I'm spending the day on the ocean side porch in silence.  I can remember seeing commercials of silent monks conversing by email.  I always wondered if that were cheating.  And here I sit on my silent day, posting a message to you to say that I'm grateful for your loving attention.

And thank you Heather and Jeff for the verbal and visual messages about the institution of All Saints' new rector.  It was the next best way to be there.

He remembers that we are dust

I'm writing from our oceanside porch where I am taking a "Porch Pilgrimage" on Ash Wednesday.  It was  cold 60 degrees in the morning, then sunny almost 70 degrees, finally a chilly and windy late afternoon.  I had to cover up.

I don’t remember exactly when Ash Wednesday became so important to me. I think it must have been in 1999 when Ash Wednesday was February 17^th. That was a time I was “commuting” between Palo Alto and Houston. Daniel was staying with Mom constantly as her hospice care.  Daniel and I started this pattern on January 17^th, the day after Jennifer and Scott’s wedding. I had turned off my cell phone on the 16^th; I knew that I might get a call anytime telling me that Mom was now critically ill and in the hospital. But January 16^th was Jennifer’s Day. I did not want any call that would distract me from my daughter’s happy wedding day. When I turned on the phone Sunday morning, there was the message. Indeed, Mom had gone to the hospital, but the doctor’s were suggesting hospice. It was as if she knew that we had tickets to fly from NC to Texas. I had arranged a connection in Houston on our CA-NC flight . We had hoped that Mom would be able to attend Jen's wedding, but a month before we all knew that couldn’t happen, but I felt that I needed to be ready in case of a miracle. And so we were flying back through Houston; it didn’t take us long to decide that we would skip that last leg of the trip. We would stay in Houston. After a week in Texas, we knew that Mom would live for a while, and so we worked out a commuting schedule so I could do the work on a project that seemed critical at the time while being with her half the week. I would fly to Houston after work on Friday and return early the following Tuesday morning so that I could do a week’s work and yet be with Mom.

Gratefully Dead - Sermons

  Ash Wednesday Sunset - magnificently blue, then finally red
This is the first of three postings on March 1  This one is from the end of the day; two postings "down" is the one from the morning.  That morning post explains we are still in NC, not in Cambridge for a doctor's appointment.  The posting below this one has some of autobiographical musings about the meaning of Ash Wednesday for me.

The post you are reading has links to the sermons I promised Daniel I would put here soon after his birthday (Feb 10).  Ash Wednesday is an appropriate time for these since they are all about my understanding of death and my experience of living with leukemia, one of those diseases that doctors now call “dire” rather than “terminal.”

Well, not quite yet

We expected some resolution on the donor front last week.  We don't have good news.  No full match yet with a live donor, and only one acceptable cord has been found (an adult needs two for a transplant).  We do have that one donor who is a "one allele level mistatch." We continue to have no resolution.  And we are taking advantage of all this good time.

For those of you who want to read about what this means, here is one of the more easily read analyses from Blood Magazine:   Download allele_level_mismatch_article_2004.doc 

[One of our friends John Sacks is Director of Highwire Press, which makes most articles from the archives of Blood Magazine available online without charge.  Having access to these articles is great for us, though we stuggle to understand what is said.  Given the technology of hematology, the articles are mostly well written.  See Highwire at: http://highwire.stanford.edu/   Thank you, John for the great job in moving this kind of material online.

Daniel and I continue to hang in here in North Carolina having fun when we are not trying to figure out medical implications.  We have been able to go to two of Zachary's soccer games so far.  Saturday Zac showed off his skill with chop sticks as well as soccer balls.   

johnsonbonnie.com

I have a new, easier way for you to get to this weblog; use this URL:  johnsonbonnie.com

For the time being you can also get there with: danielshurman.com

Yeah! for simplicity made possible through technical complexity and just a little knowledge of how to use it!

And for simplicity navigating through this BLOG, use the categories listed to the right:

To check out quickly where I am and what's up: What's Happening?

To understand/learn about medical processes and how to get in the donor registry: click on the category:  Transplant/Medical

To read my personal and spiritual contemplations:  Life's Reflections

Next phase of the journey begins

On Monday afternoon, the 13^th, I got the first good news in a conversation with the doctor who will preside over my transplant. After looking at all the evidence, the transplant search team and my doctor were satisfied that the live donor identified last December is an appropriate match. This person is a “five and a half of six” match. [Recall there are six elements that need to match. On March 12^th I posted a link to an article in Blood Magazine describing possible implications of doing a transplant with what they call a “one allele mismatch,” or one-half mismatch.]    What has changed since December is the publication of a study showing this level of mismatch does not lead to different outcomes than those of full match transplants. 

Before I could talk with the hematologist about dates for my next appointments at Dana Farber, I got a call from Deborah, the person leading the search for a donor. She told me joyfully, and before telling the doctors, that she had found the SECOND of the two cords I would need for a cord transplant.

Here is a picture of a stem cell ready for tranplant.

Now we have two options: live donor (a 35 yr old male who is a near match) or two large, matched-to-each other frozen umbilical cords for a cord transplant.

Wake me when its over!

Daniel and I had a good trip home from NC. It took us until Wednesday afternoon to get the car packed. We thought we might do all that on Tuesday, but Zachary decided he wanted to come to the beach on Monday night. Having him one more time was a treat for us. I bought him a shirt that said, “What happens at Grandma’s, stays at Grandma’s.” We wish it were decorated with muffins instead of cookies. We call him our “Muffin Boy” and he doesn’t object too much.

My close engagements with medical science have begun. Friday I had my first full bone marrow biopsy. They offered me DRUGS to get me through the biopsy. I got both ativan and morphine. I pretty much slept through the whole thing, and had no memory of anything for 24 hours. That was the best biopsy I’ve ever had. It was a great way to start all this medical tour.

Today, Sunday, I got two units of blood; I was beginning to look pale yellow. I look more normal now, though I had to rest for a few hours after getting the blood. On Monday I go back for more heart testing and stuff like that.

I expect to be in the hospital on Thursday to start chemo therapy. I will first get a line inserted in my chest into which they will put the chemo and all the other drugs I’ll get. They also use this “Hickmann line” to draw blood for testing. It sounds a bit creepy, but it is much better than being poked all the time.

Here is the hospital contact information:
Brigham and Women's Hospital,  75 Francis Street,  Boston, MA, 02115
Since I use my room phone line for internet access, don't try to reach me through the hospital operator; use my cell phone.

Remember that I cannot have flowers or food in the hospital. We are still lobbying to get broadband access in my room. I hope to set up my Skype camera. The best way to contact me will likely to be email.

I'm looking forward to good week here on the EDS campus, though this is spring break and many friends are not here.  The weather is warming up and soon we'll be seeing the first spring flowers.

 

Not in the hospital until Monday

Have you ever seen that commercial for Florida vacations that shows a lot of cars with flat tires? Vacationers blow those tires backing out of car rental returns when they decided at the last minute to stay in Florida a few more days.  I’m feeling a bit like that.  On Wednesday night I felt I wasn’t quite ready to go in the hospital. I wrote my doc to ask if I could enter Monday April 3^rd instead.  Just a few more days. . .

I will go in on Monday and get my Hickmann line installed first thing on Tuesday morning.  Presumably they’ll start the chemo drip shortly after that.

Life is good here.  We’ve spent some time with our Cambridge offspring.  Our “baby Jackson” is now an accomplished toddler Jackson.  See more pictures of our latest visit with him in the albums on the right.

We are looking forward to our weekend on the EDS campus, seeing friends and family here, and packing for hospital.

Perfect Day

I knew it, and the weatherperson confirmed it.  Today was WAY to beautiful to be in the hospital.  It hit 74 degrees in Boston. 

I walked to Harvard Square and saw these flowers, the first signs of spring here.  I had a mammogram (all ok) and then got my THIRD "pre-chemo" haircut.  I guess the lovely person who cuts my hair really believed that I am now pre-chemo because this time she cut my hair really short.  It looks a bit like Zachary's, or maybe Ryan Seacrest's.  (Pictures of this haircut later).

Daniel and I are having a quiet weekend, fininshing up things. I expect I'll start to pack tomorrow.  (really... I will)  I went for a long drive today with the excuse that I was going shopping. 

I'm in the hospital now

I managed to avoid checking in until about 8pm so that I could go to my curriculum confernce class and also attend Eucharist in the EDS chapel.  The class, and especially the Eucharist, were amazing in providing me with the grace, faith, and hope to come cheerfully into the hospital.

I have a tiny room here, though the nurses are already plotting to get me a bigger one.  Tomorrow sometime I will get the central line installed in some minor surgery.  I expect to sleep most of the afternoon.

I have some great pictures of my check it and even better pictures of our wonderful Eucharist.  I'll write more about those soon, hopefully tomorrow.

Know that I'm fine and feeling so amazingly blessed with these six months of great health and now the finest doctors possible, and most important, the best "pray-ers" anyone could have. 

Love and Good night (it is midnight)   -- b

It’s about time

Here I am checking in first with admitting, then into my room.  The first person who spoke with me (the one on the right) introduced herself as my day nurse ANGELICA.  Daniel and I knew we were in the right place when an Angel greeted us. My night R.N. on the left clued me in on LOTS of how to make it work for me.  I have more pictures of my room that I'll post later.

I’m settling in for the easy ride of my hospital stay.  I got my central line about this time yesterday (after waiting all day to be called—with no food or drink).  My time down in the “Intervention Radiology” O.R. was a bit like an episode of the moving/TV show MASH.  Everyone was in fine shape for kidding and jokes and I joined right in.  That was all before they gave me the “good stuff.”  I remember that the joking continued after my drugs started to work, but I’ve completely lost the details of what happened.  This “conscious sedation” stuff is a real time warp.  I could hear what was being said, but I couldn’t remember it from one moment to the next.  It was as if time collapsed so that everything happened within five seconds.  Daniel and I have been in many conversations ABOUT TIME recently.  I even got one of Brian Green’s books on CD to help me further explore the new scientific understandings of time. 

I feel that I’m living in a time warp. 

Hanging Around

Tonight I will finish the induction of chemotherapy.  At that point, I'm waiting for my counts to hit bottom because my bone marrow is demolished.  Then I'll be waiting (probably with some anxiety) for my system to restart.  I can tell now that I'm getting slower and slower at almost everything.  The doctor has a sheet of paper on which I sign my name every day as a test of my motor coordination.  I can still do that.  Mornings are much better for me than afternoons, and by evening I can't really think much.  An evening stroll around the lovely halls does perk me up a bit. 

I have a small altar area parallel to my bed on the left side. I have a Indian batik  with flamingos, a gift from Christopher Duraisingh to bring me good fortune.  I also have my grandchildren collage, twenty five pictures with the title, "And all the children are above average."  Staff people like to look at it and it gives me an opportunity to talk about loving and cheerful topics.

Susan came by today for a great chat. She practiced her homily for Sunday, a beautiful meditation about watching the events of Palm Sunday.  We had communion.  It was a fine way to end this week and prepare for the weekend that begins Holy Week.

Today is the "fourth month" anniversary of my first posting on Dec. 7th.

Dial up speeds

When one moves as slowly as I do these days, dial up speeds seem like lightening.  I finished my chemo infusion on Friday, and just as expected, my fever shot up on saturday.  It is down now, leaving me feeling as if I had a fever.  Yuch.  I'm just moving slowly, but in expected directions.  Love to you all, B.

Living Holy Week

It is the first day of holy week.  Holy Week is a penitential time for Christians, a time when we remembered that Christ died for our sins.  It is sometimes easy to think of Jesus Christ as a whimpy sacrificial lamb.  Jesus urged us to be humble and not boastful.  Yet, he was anything but meek. The Bible gives us the clear picture that Jesus was defiant:  when he saw sacrilege and injustice, and he spoke out against it, even though it led to being ostracized and ultimately killed.

Yesterday I saw a story on Pat Robertson that aired on the NBC news show Prime Time.  When asked questions that pertained to a more open interpretation of the Christianity, Robertson spoke of himself as a “messenger” – he only says what the Bible says.  As a messenger, he claimed he can’t change the message.  There were plenty of scenes of him in his lavish estate; while the voice over mentioned his $2 Billion sale of the Family Channel to ABC, but they didn’t ask him where the money went.  They never asked him about his dealings with tyrants in Zaire and other African states.  If there was an implication that Robertson’s is not a Biblical message, it was very subtle.  I could not help think of Robertson when I read today’s Gospel reading in which Jesus is turning over the tables of the money changers:

Mark 11:15-19

Then they came to Jerusalem . And he entered the temple and began to drive out those who were selling and those who were buying in the temple, and he overturned the tables of the money-changers and the seats of those who sold doves; and he would not allow anyone to carry anything through the temple. He was teaching and saying, ‘Is it not written, “My house shall be called a house of prayer for all the nations”?
But you have made it a den of robbers.’
And when the chief priests and the scribes heard it, they kept looking for a way to kill him; for they were afraid of him, because the whole crowd was spellbound by his teaching. And when evening came, Jesus and his disciples went out of the city.

Last year at EDS, Holy Week focused on Jesus as the man who called for change and died because of his stance for the poor and against the arrogant.  Holy Week last year fell in the third week of March so that the dates fell on the forty year anniversary of Martin Luther King’s Montgomery March. Here is the Monday Morning Prayer Liturgy that incorporates King’s words and calls for an end to “normalcy.” I am attaching the liturgy here to invite you to think of the revolutionary aspects of this Holy Season.

Download holy_week_monday_liturgy.doc

Red Sox

Revised  4-12-06

Zachary at age one with Fred the Baseball Boy

Zac with his T-Ball team.

Yep, he is the one on his knees, ready to get back in that game.

What a difference 3.5 years can make!

These pictures of Zac are for me pictures of LIFE since first diagnosis.  In July 2002, my doctors tried to talk me into going immediately into the hospital for chemotherapy.  We said, "not yet" and headed for Zac's first birthday where we took this picture of him and Fred, the Baseball Boy that Mary Newman gave him.The second picture of our T-ball Player shows what he is like now.  A lot of life and love went into growing that boy, and Daniel and I along with his parents, grandparents, and friends, have enjoyed it all. 

When I look at the second picture I see how much he still has to grow and I'm more committed than ever to be there to cheer him, his brother, and his cousin on... along with who knows how many more young players that may show up in our future. 

Zac let me take Fred the Baseball Boy to the hospital in Stanford and let me bring him to Boston to keep me company while he can't be here. 

Jackson is already getting to know Fred.  Here he is taking Fred for a ride in my hospital room   

Yesterday the Friends of Dana Farber brought me a Red Sox cap, some cracker jacks and other reminders of the opening home season which started yesterday.

Fred is looking good today in his Red Sox hat.

I plan to take over the hat when I shave my head.

As you can see, I am feeling better after recovering from my 102 fever over the weekend.

Poem of the day:

If I didn’t have a building blocking the way,

I might be able to see Fenway.

It’s less than a mile from where I’m confined;

yet I’m here, not there; to this, I’m resigned.

Numbers

I believe that some people who read this want to know REALLY how I am, not how my mood is or what I'm thinking about and praying.  Here is my own version of how I am on Day 9 of hospitalization.

Remember that with Induction Chemotherapy the objective is to zap the “coral reef” structure within my bones as quickly and completely, thereby killing the leukemia cells that had taken over about 80% of that territory. When all the cells are killed, then the healthy cells grow back first. I got infusions of Chemo drugs 24 hours a day from Tuesday to Friday last week; since then, the nasty stuff has been doing it damaging work. I have to go down before I can go up.

My blood counts today were reassuring LOW:

• Total white count (norm: 4-10):         .25
• Percentage of white count that are neutrophil infection fighters:  0

• Red count:  (norm: 4-6):        2.4

• HCT oxygen carrying cells (norm: 36-48):      23

• Platelets (norm 150-450):       7

We are very encouraged about these low numbers; they indicate that the chemo did its job. At Stanford, I had to have a second round because my numbers did not get this low with my first chemo.

The goal is to achieve and then live through this highly vulnerable state to reach the recovery stage.

I look a bit strange.  Most of my skin below my waist looks like the worst measles you've ever seen as the result of a drug allergy made to look worse because my low platelets led the spots to be more numerous and bigger.  Plus when I scratch the spots, I get bruises.

Above my waist, I have things that look like water blisters from the same allergy.  Around my hairline I have similar blistery looking things but they are red and very itchy.  I will be putting pictures of me in the “Health Record Album” in the next few days.

Benedryl helps the allergic reaction somewhat.  Thanks to Valtrex, I have no cold sores around my mouth and so far the hairline blisters seem content to stay that way.

My skin texture has a bit of a “crusty burn” look from the internal chemo burn.

Since my fever broke on Sunday, however, I’ve felt remarkably great (better than good). I feel that my body is telling me it is in remission. That may sound strange, but I feel healthy on the inside in a way I did not before.

Infection is the major health hazard now and I have many sites where infections could set in or expand. I’m monitored every four hours.  Most of the hours in a day, I have multiple lines of drugs being infused into me.  My fever has stayed below 100 since Sunday and was normal most of today.  I got infusions of both platelets and red blood.

Sorry if this was too gruesome; I welcome these inconveniences as a sign of transition to someplace better than I was.    Love,  B.

Safe Waiting

This is the time we have anticipated since I started the blog...  My counts are now bottomed out.  Though they could go down a little more, this is the TROUGH TIME.  I may be down here a couple of weeks with little natural immunity.  It is like walking a tightrope.  Nothing is wrong until something goes wrong.  If I can get across this trough without a debilitating infection (bacterial, viral, or fungal), I will have accomplished the first of three steps toward recovery. I will have a body free of leukemia and strong enough to go to phase 2.

My prayer simple:  stay safe from infection and any devastating complications from drugs I need to take to do that. 

If I get past phase 1, phase 2 will begin mid May.  Phase 2 is a time for going "chimera" (look that one up in your OED!).  If I achieve chimera without leukemia, then I'll have one more hurdle, to lay my own biology down and give up any continuing fight with the biology of the donor that comes in to rescue me.  But that is for later stories.

Right now, my goal is to stay strong and avoid infection and cross this trough safely.

I get more blood today.  I'm off most medications except for things like Pepcid to prevent acidity and of course antibiotics. 

Mostly my medicine is music, prayer, and laughter.  I'm really enjoying those CD's people lent me.  I'm having a "Tess Brown" day, listening to music she picked out for me. Yesterday our Prayer Group with Katheryn Stiles met here in a lovely room for visitors down the hall.  We had Eucharist as well as our regular session.  Debrah has brought Jackson this week.  She comes everyday bringing me her bright conversation and Starbucks!  Do you get it yet?  I'm totally spoiled.

Maundy Thursday

After Ash Wednesday (which opens Lent), Maundy Thursday (which closes Lent) is the day in the Christian Calendar with most meaning for me.  I honor the importance of the Big 3 Days (Christmas, Good Friday, and Easter) throughout the Christian world for they mark the major milestones of Christ’s life as a human. Yet, Ash Wednesday and Maundy Thursday mark major milestones of Christ’s life IN ME. 

 

I think of life as a journey, indeed a pilgrimage because it is a sacred. The roads are well traveled and offer companionship; so we travel with others and from time to change the company we keep. At the same time, we are each on our own pilgrimage; no one’s pilgrimage is like anyone else’s. From time to time on my pilgrimage, reality gets very clear and time pauses so that I feel the Cosmic Jesus in my being. 

 

I was raised in what Episcopalians call “Low Church.” “Low Church” congregations in the 1950’s restricted their attention to the Big 3 Days. I can remember knowing when it was Lent (Episcopalians do not say “Alleluia” in our prayers during Lent); I can’t remember ever going to an Ash Wednesday or Maundy Thursday service. I know for sure that we never had a foot washing service nor a Maundy Thursday Vigil. 

Day in the Life

Some people have asked me what I do all day, and what I feel up to doing.  I thought you might enjoy a little picture tour of my day.

5am - Nurses draw blood samples from my central line, and the nurses' assistants take my "vital" signs (how vital could they be at 5am?).  Nurses unhook my lines

7am - Sun from my east facing window tells me it is time to wake up for morning prayers.  This time is for my primary Ignatius "kataphatic" meditation for the day (meaning an extended visualization in which I place myself in a bible story). I usually heat a cup of water for tea at the microwave down the hall.

8am - I start my BLOG entry for the day

8:30 - Hematology doctors stop in to check me out.

9am - Breakfast arrives; I'm usually well into writing something on the BLOG or for my online class and I get around to eating when I can take a break

10am - I'm hooked up for more medications. My daughter Debrah brings me Starbucks and some too tempting treat and we have coffee break together.

11am- EDS Friends come for chapel service in my room.  We have wonderful conversations and amazing liturgies.    Here are pictures from Maundy Thursday and Good Friday visits and liturgies.                

Who Will Roll Away the Stone?

MARK 16
When the sabbath was over, Mary Magdalene, and Mary the mother of James, and Salome bought spices, so that they might go and anoint him. ²And very early on the first day of the week, when the sun had risen, they went to the tomb. ³They had been saying to one another, ‘Who will roll away the stone for us from the entrance to the tomb?’ ⁴When they looked up, they saw that the stone, which was very large, had already been rolled back.

The verse from Mark read on Easter morning presents one of the great puzzles in the Bible.  Here are three perfectly intelligent women going out to do a ritual they have no doubt done before, but this time with a twist.  Even before they set out by themselves, they know that the body they will prepare has already been placed in a rock cave and sealed with stone too heavy for them to move.  As they travel in that early morning light (obviously too early for the big guys to be out), they ask each other with curiousity, but without hesitation, who is going to help them to get into the tomb.  They travel in faith.

Margaret Irwin's last Easter sermon at All Saints' Palo Alto bought my attention to this amazing puzzle, one we read at least once a year and never pause to consider:

Do I have the faith to go to the stone -- to go on with my life without every question answered ahead of time -- without knowing "Who will roll away that stone?"
Thank you Margaret for that wonderful question that pointed me look anew at my faith.

Here is a picture of Margaret sitting on the front row at the installation of All Saint's new rector. (remember the one I missed going to in California?)

Happy Easter. 

I'm now doing a little hike out of my hospital room to see if I can find a place to watch the sun rise over the Charles this morning -- a small act of faith that I'll find a window. 

 

Healing slowly

I've slept most of Sunday, Monday, and today. I continue to have a very uncomfortable itch.   My body is healing; today I made the first neutrophils, just a few, but the beginning of rebuilding my immune system.   Stay tuned.    -B