Bonnie Recovery

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.