Bonnie Recovery

Analogic Anxiety

Here is my Independence Day firecracker. Abigail Jean is VERY independent these days and 100% fire cracker. If I’d been with her at the parade in Southport, NC, I’d probably have been registering voters for Obama. There were six such Obama events around Wilmington over the holiday. Pretty impressive. How was it in your neighborhood?

Hope you had a good 4^th of July holiday. Daniel and I had a quiet 4^th. Margi and Peter came over Friday night. We had massive amounts of BBQ with Daniel coaching Peter on the art of Q.  Daniel also made a fresh corn salad based on what he had eaten at Armadillo Willies in Los Altos. 

Margi and Peter have sold their MA house and today are moving half their things to Australia and half to a condo near their house. By comparison, our move looks  easy and fool-proof. I’ve spent most of the day getting pictures and text for Daniel to advertise stuff we are selling on Craig’s List and also planning the itinerary for our Chicago-Texas BBQ tour. Daniel is doing a great job of looking up descriptions of things we are selling along with pictures and getting them on Craig’s list.

I have a case of “analogic anxiety,” meaning that I’m worried about losing my teeth because I lost eyesight in one eye. I know it isn’t rational. Still, I keep thinking about how quickly my eyesight went. And now these ten cavities … what if the dentist can’t save my teeth. I’ve always had wonderful teeth, especially since I invested in gold crowns for all my molars. My Mom had pretty good teeth but she thought that false teeth would be better because Daddy never complained about his. She finally found dentist willing to pull teeth that were too good to pull and make her false teeth; it was a decision she regretted all the rest of her life. At the end of her life she developed cancers of the mouth from having dentures that never really fit regardless of how many times she had new ones made. My last visual members of Mom are with those horrible bumps in her face where the bulging cancers were filling her mouth. Well, that’s my anxiety story. Thanks for letting me get it out; it helps to confront these anxieties whether rational or not.

These anxieties seem to have me a bit high strung recently. Night before last I didn’t sleep at all. I am overcome with zeal to plan our three week Midwest (aka Barbecue Tour). Some of you have gotten my messages about when we expect to see you. I’ve been calculating routes with Google maps, figuring out how long we can drive, what will make a good visit with people along the way, and really absurdly looking a reviews of BBQ places to decide where we should eat. This last task is absurd for ME to do because BBQ is DANIEL’S thing and I know that he will want to do that research and make those decisions. So, why am I so obsessed with itinerary planning? Partly it is a creative outlet. I forgot some bread I had in the over the other night; Daniel took the charred remains of a loaf to the garbage center. That event discouraged me from doing much cooking for creativity. Also I think I’m planning our trip out of here to get myself involved with ACTUALLY MOVING OUT. I can project being gone in a very concrete way to soothe myself about leaving a place we have come to love.

One person we REALLY love in Cambridge is our grandson Jack. He is 3 ½ and learning all the time. He has become quite the builder these days.  We will miss that boy.  I'm being happy about our decision to drive up here for a week or so every quarter (a plan the eye doc insisted on). 

I’ve also been spending some time in the little park at Harvard Square. When we first moved here I imagined that I would be spending time there, but of course I haven’t until now. Now I go to Staples to buy moving boxes then sit and drink ice tea and watch people in the park while I wait for Daniel to pick up me and my packages.

In this picture you can see that I’m pretty happy despite this anxiety stuff… and also that I have naturally VERY curly hair. Since I haven’t had any chemo in well over a year I have no idea how I got this or how long it will last, but it is cute, don’t you think? 

Bonnie for BanD

 

More on the New Normal

Life in Cambridge (surrounded by boxes) is a bit better than one might surmise from Daniel’s posting. Yes, my current round of graft vs. host disease is painful. It’s been hot here and the heat bothers the patches on my arms and back.  My mouth is mealy and sore so that I can only eat the mildest of foods. And I am keenly aware of what the doctors observed: that I am a miracle to be here. We knew from the beginning that a transplant was trading one problem for another; since we were rolling the dice with my life, the transplant seemed like a good bet and I continue to know that it is. Looking around at others who attended the surviving transplant conference, I’d estimate (with no scientific basis) that I’m about in the middle.  There were people who’ve not experienced any GVHD at all and then there were some that were oh so much worse off than me. And all of this is just on the physiological/medical level. I met no one there who has been as spiritually uplifted as Daniel and I have been through this process. And certainly no one had a caregiver as wonderful as mine. Some were truly exhausted by all they had gone through, though most were coping well. Being grateful every day is a sure way to focus on what is good and to keep moving along to health.

I’ve mentioned that I had contact with my 37 year old male donor whose name is Jay. I feel so especially privileged to have Jay’s cells and not just because they are young and strong. Jay’s father got leukemia in 1984; I think that he was 42 at the time. He would be about the same age as I am. He had a transplant from a brother (the best match you can get short of an identical twin), but the technology for the transplant itself and the post transplant treatments were crude by today’s standards. Jay was just a boy when he lost his dad to infections resulting from the immune suppression associated with a transplant. When my transplant was delayed from the original date in May to the following August, Jay wondered if I had died of infection. Recall that my first chemo did no good and the docs prescribed another round of chemo trying (in vain) to reduce my leukemia blast levels. It is only Jay’s stem cells and the marrow that they produce that has cured my leukemia.

Jay registered a few years earlier when there was a donor drive at a local college. I am so fortunate that he knew about that drive and was willing to sign up. Although he is not an exact match, he is by far the closest they found in more than six months of searching.  I feel privileged to be able to live in memory of Jay’s father. Jay’s mother is now a reader of the blog: WELCOME and thank you. Moreover, Jay is a Christian. He is the editor of a Roman Catholic newsletter in the diocese that contains St. Louis, MO. Daniel and I will be seeing him on a way through St. Louis. We are very excited about that possibility.

I also hope to see my cousin on my father’s side in St. Louis. My cousin H.B. looks very much like my dad. The McDaniel genes are strong for those family members who have them (like my sister, but not me). It was positively scary to see my cousin who was the last time I saw him the same age as Dad the last time I saw him. It was like seeing my Dad come to life. Wow !

I find myself in very good moods these days. Daniel drove me to NH last weekend to see our friend Susan Langle who is now the rector of a wonderful little church in Claremont, NH. The church has wonderful stained glass windows that remind me of the church I attended as a girl in Texas. Some of the windows are more modern in orientation. Here is a picture of Susan’s favorite showing stained glass Sophia standing over and protecting a woman with Susan right beside, gathering the gifts of Sophia. And also here a big welcome with her name on it. It was wonderful to see that in just a few weeks the congregation has begun to love her as we do. Also I’ve heard that Sue Crommelin has accepted an interim assist rector at a church near her home in Virginia. Wife of the interim rector has cancer and he is not able to give both his wife and the congregation the care they need. Sue will be a perfect fit to take care of the pastoral needs of the congregation on a daily basis. I’m so happy that she will be doing this.

Daniel and I are cooking along on our plans to drive from here on July 21 heading to Chicago and seeing my friends Tom and Margaret Benson in State College PA along the way. We will make a side trip from Chicago to Madison to see Margaret and Paul Irwin. We’ll be about a week in Chicago and then head to Texas through St. Louis. We’ll see friends in Austin then head south to Wharton to see Mary Newman and on through Houston seeing Melanie Bradford before going to Baytown to see my cousins there. Sound like a trip? I haven’t mentioned all the BBQ places we’ll be seeing on the way there and back through the south. I’ve also made our plane reservations to go to CA in September with side trips to Portland to see Eric and Ashley Dishman and also to LA to see our son Ron. We’ll be in CA for two weeks (!) and should get to see many friends there as well as go to the Interval Reunion (how many people still get together once or twice a year eight years after their company was closed? We Intervalians are a family.)  After moving to NC we’ll be doing a lot of travel including a trip back here to Cambridge to visit my FOUR (4) doctors. We plan to drive up here every quarter for doctor’s visits in addition to seeing a doc in Chapel Hill or Durham monthly. I do get a bit exhausted just thinking about it even though I’m so excited about seeing friends and even checking in with doctors.

I’m also celebrating that the library I’m donating to the Southport church was picked up by the Postal Service today. Eight boxes of media mail and one parcel post with library supplies. YEAH. Sending the books is a great way to inaugurate my concentration on getting packed!

Finally, we continue to enjoy the grandchildren. I had so much fun in NC. Here is a recent picture of Ms Abigail Jean. Note what a glamor girl she is becoming in her baby bikini. Note also her dolly who is also wearing a hat. Jackson will be visiting us on Sunday, Yeah.

In pretty darned good spirits,

Bonnie for BanD

 

 

 

 

 

 

Our new normal ....

Our Bone Marrow Transplant doctor and nurse, who have been dealing with patients with Graft vs. Host Disease for more than 20 years between them, remind us that Bonnie is a miracle:  15 months ago she was a "slip of herself" - coming to her weekly visits in an ambulance, strapped to a gurney.  They point out that Bonnie looks great in comparison to a year ago.  We all observe that Bonnie's rosy cheeks are a symptom of her Graft vs. Host Disease and the 6 bloody bandaids on her skin are a result of the Prednisone thinning her skin etc. 

We are left to simply trying another (very expensive) drug to supplement the steroid she is taking, which more or less controls her Graft vs. Host Disease - BUT which reduces her muscle and bone mass and thins her skin. The new drug, is the most widely prescribed anti-GvHD supplement to Prednisone, though it is not yet proven effective.  The side effect is to cause diarrhea in some people. 

I keep challenging the doctors to tells us of a trial or some treatment regimen that will eliminate GvHD, just as Bonnie's Bone Marrow Transplant eliminated her Leukemia.  They smile.  We were told we can flip a coin as to which immune suppressant to take.  Today it is simply trial and error we are told by one of the best and brightest research doctors in the field.  We have reached the end of the path of Western allopathic medicine as practiced at Dana Farber Cancer Institute. 

So while we filled the prescription, we are redoubling our efforts to reduce stress and being present to the many blessings of life and attending to our prayers.   

It is time to turn our attention to packing and moving and creating a new normal.

/Daniel for BanD

What a drag it is getting old....

My dear mother is having difficulty with her memory and getting the right things into her purse, though she is perfectly lucid, even erudite on a wide variety of topics.  This is the woman who gave me life and took care of me when I was too little to do so on my own.  This is the woman who served on the Glencoe School Board and twice on the New Trier School Board and the committee to interview and select a new Rabbi for her Temple.  Ohhh my, my dear mother.  sigh.   

My dear wife, continues to suffer under the drag of Graft vs. Host Disease.  Her mouth hurts. It is hard to eat.  Even Key Lime pie is too "sharp" in her mouth. Her beautiful Scots-Irish skin is plagued with rashes and scabs where the tiniest bump creates bruises that later bleed.  The surface of her eyes are again roughened up and hurt.  Only her scleral lens are protecting her from the pain that is difficult to bear when she takes the protective lens out.  The eye surgeon says her cornea graft will fail sooner or later and Bonnie will have to have another cornea and lens replacement to save her eye and hopefully give her decent sight in her left eye.

Bonnie saw the Graft vs. Host dentist and mouth specialist at Brigham and Womens Hospital 4 months ago to have the sores in her mouth evaluated and treated.  She had no cavities at that visit.  She returned to see him yesterday and she had 10 cavities, mostly where her gums and teeth meet, and a few under gold crowns that were solid for years.  Bonnie's dental work will require 4 two hour appointments over the next four weeks to correct.  Due to Graft vs. Host Disease of the mouth and the anti-immune drugs to treat the GvHD, Bonnie developed more cavities in four months than she has had in the previous 64 years of life.  And Bonnie has been swishing her mouth with Flouride every day.  Arrrrgggggghhhhhh.

It is a challenge to know which specialists to see to stay ahead of the effects of her GvHD, much less to get appointments booked in time to save Bonnie's health.  We must find a real effective cure for this GvHD with Dr. Cutler's help.  There is a promising trial, but it is over now.  We shall see what we can do. 

Cataloging Life

Ouch, it has been a LONG time since my last post.  Thank you Betsy and Melanie for prompting me.  Bets, I’ve been thinking of all the good Tex-Mex food you are eating (though Melanie may get better food in Houston!).   

Speaking of food, we have been cooking around here.  What started as a relatively small BBQ for students in the online course I took this spring (they are on campus for a two week course) became an outdoor dinner party for 30.  Daniel has learned to cook “mama style” and so of course we had food for 60.  It was so much fun to host a party again.  I baked bread and made half a dozen sides.  It felt good to sit down with our guests and just get to know them.  I had to go to bed for a couple of days afterward.

Last Friday Margi Olson and her husband came for dinner.  On a whim I invited Emmett McTeague.  Emmett hired Margi at Aetna during a sabbatical she had twenty years ago.  She lived in my Hartford house during the three days she was there from NY.  Emmett and Barbara live in Rhode Island now, but they came with less than 24 hours notice.  Before we moved here, Margi, Emmett, and I had some rounds of email about getting together; after four years we finally made it happen.  We had such a good time catching up on the past two decades.  Margi and I shared the house just before she met her husband Peter; Daniel and I met during her last month in Hartford. 

When I got overly tired after a small dinner party, I began to pay more attention to the small rash I was developing.  Sure enough my graft vs. host problem is back.  I’m back on 20 mg of prednisone (ugh).  It is giving me more energy even if artificially so.

I’m donating my seminary books to St. Philips, the church I’ll be attending once we get moved.  I thought I had about a hundred books.  Turns out the donation will be almost 300 books.  St. Philips has no library currently.  So, I figured I should start a circulation system.  I designed a book plate with our names as well as identifying St. Philips as the owner of the book.  The book plate invites people to email me if they want to talk about the book.  When I thought of donating the books I was imagining just putting on a book plate and shipping them off.  Starting a circulation system that is all paper based is quite another project.  I found a library supplier for labels and those little envelopes that hold circulation cards.  I’ve been looking up the Library of Congress number online, entering book information in what will pass for a database, and then copying some of the information onto a card label template.  After computer work during the day I do the label sticking (onto cards; card holder, book plate, and the spine label onto the book) at night while watching the Celtics beat LA.  All the time I’m thinking about my books on contemplation and trying to maintain a contemplative mood in this action.  It’s been a good exercise; I’m almost done. 

There’s a certain reflection on life in doing a task like this.  We lost all of our books in the moving fire four years ago.  While cataloging some of my spirituality books I would remember a book that I’d lost.  This collection is not quite complete without that book I’d lost and not replaced.  I’m also fascinated by looking at what became a passion for me even when I didn’t have a course on the topic, C.S. Lewis, for example.  This has been a good practice for me as a completion of seminary study.  It’s given me a perspective on my path here that I don’t think I could have gotten another way.  I’m reminded of how much we get when we give. I would never have cataloged all my books with such loving care and so would have missed this time of retrospection and inspection as well as what we call “formation” here in the seminary.  I’m reminded of Melanie’s observation that in 33 years she hasn’t written a hymn like she did when her music teacher told her to listen to the sun; why don’t we find the time to do things that are so satisfying?

Next week I’m in NC being Zac’s chauffeur to his baseball day camp.  His mother reports this about him:  “Right now he is yelling at Abi "give me a break Abi" as she knocks down the tower he is building.  Now he is mumbling "thank you very much Abi... I didn't even want another person in my family..."  I’m very much looking forward to being there.

Love and peace, Bonnie for BanD

Bonnie - what an amazing woman - ready to move again.

Every once in a while you look at the person you are around the most ... and you realize you barely know them, or what new thing they will spring out next. 

Oh yes, you know what their hands look like and you could spot them walking across Grand Central Station's Concourse, but the spark, the creative essence that they are...   The one who uses those hands, and who makes up the cosmic jokes about who or how we are - the one you really love - that one -- you have only glimpsed their contrail. 

At least it that is how it is for me:  It is virtually impossible to go to sleep to one's life when connected with Bonnie.  She is always re-inventing herself.  She is always Bonnie, and in no two years is she the same Bonnie. 

I have been fixing PCs and A/Cs and lugging stuff in and out of the storage area - very busy and asleep to the cosmos.  The wake-up-to-life-moment happened yesterday.  It came in the lull just after a call from our next door neighbor in North Carolina.  He had intercepted a man trying to get into our house through the back screen door - he claimed he had come to "to change the locks".  It slowly dawned on us that we had better file a police report.  More on that adventure, later.

But the wake-up-and-see-your-life-moment had nothing to do with outside threats or with action items.  It was glimpsing the re-invention of self and circumstance that Bonnie is doing all the time.

Bonnie has been fighting a cold, which can become an adventure for us:  Last month Bonnie's cold turned quickly to pneumonia with a 103 fever.  She landed back in BWH  hospital on intravenous antibiotics.  Bonnie has been having odd pulsations, palpitations and tiredness, and her mouth sores have returned, and there is a ringing in her ears as she has come almost all the way off of her anti-immune drugs. 

So, we were resting mid-day on our bed, looking out at the new leaves on the trees we are about to leave behind.....

Graduated!

Now it is really finished.   Wednesday evening we celebrated with a commencement Eucharist followed by a garden party on the lawn outside the chapel.  Bishop Charles is retiring this month.  He gave a fine finale sermon and a ten minute blessing.  It was web cast.  I'm looking into how to get a video copy of it.   

This is the fourth graduation I've attended and I think it was by far the best.  I might think this because it is the one where my family and friends were here; others agree that it was the best they have attended.  Everything ran smoothly.  The food and flowers were spectacular.  Neither church nor chapel were too hot.  We have a new sound system so that even those of us who don't hear well could hear everything. We honored NBA star Kevin Johnson for his humanitarian work.  Here is a link to the EDS site with commencement pictures.  EDS Commencement 2008

The event was so much more than these comforts.  There was a lively spirit and spirituality to the event.  EDS is changing.  We will be sharing some of our buildings with Leslie University beginning next year.  EDS is doing more online education and has less need for dormitories.  Everyone was aware that this is the last year for EDS as we have known it.    Bishop Charles and the faculty have done fine job of establishing EDS as a solid educational environment in a time when all seminaries are challenged.  We were celebrating success at the same time as anticipating change.

IT has been great having Daniel's Mom and Sis here.  It made this graduation much more meaningful to me.

Both the garden party and the reception following the graduation service were times for catching up with friends.  With me here are Susan Langle, Sue Crommelin, and Katherine Styles.  We are four of the six people in our spiritual direction group last year.  Mary Wetzel and BJ Hipsher could not make it to graduation; they were greatly missed.

Here I am in my graduation gear.  Daniel took this picture as a remembrance that we have lived at 15 St. John Rd. 15 is the chapter in St. John's gospel where Jesus instructs us to "Love One Another."  15 St. John has been an amazing place for us to live.

The graduation celebration yesterday was wonderful.  I got a standing ovation when I picked up my diploma.  I felt my colleagues and teachers were celebrating the miracle that God has brought in my life.  Certainly I have been the student least likely to graduate.   

I wish all of your could have been here for this wonderful celebration.

Bonnie for BandD

Graduation

Tomorrow is official graduation day though the festivities start at 5pm today.  Daniel's Mom and Sis, Margery and Bev, are here. 

Here is your invitation:

Download graduate_invite.pdf

The highlight of the week I believe will be the Commencement Eucharist today at 5pm.  (Not the actual graduation tomorrow that tends to be long and boring.)  The Eucharist will be webcast.  Join us for all or part of it if you can.  Here are instructions for logging on:

Go to http://eds.acrobat.com/demo
and LOG IN as GUEST.
You will be prompted to type your name.

A new window will open enabling you to see the Chapel and participate at a distance.

The person who arranged this suggests that you log in at 4:45 for the 5pm service.  If you do, you'll get to see a crowd of people looking for seats.  I suggest that you may want to login about 5:20 or so to catch Bishop Charles' sermon.  He is one of the country's finest preachers.  He too is leaving EDS (for San Francisco); I expect it will be a fine sermon. 

Here is the order of worship:

Song of  Praise:  H379 "God is Love"
Wisdom 7:26-8:1
Psalm 13 9:1-17
I Peter 2:2-10
Sequence Hymn:  Will You Come and Follow Me
Gospel: Mark 6:7-13
Offertory Hymn: I, the Lord of Sea and Sky
Sanctus: Iona
Sermon
Communion Hymn: Peace Before Us

My friend Mary who graduated last year just called to tell me what a miracle it is that I am alive and able to graduate. Thank you for the love and prayers that made this graduation possible.

Bonnie for BanD 

The Donor!

Yes, Abigale is definitely growing up.  She is officially one year old today.  Her mom jumped the gun a bit by turning her car seat around to face forward a week or so ago.  She loves looking at Mom now.  She has had her first pedicure; check out those toes.  I have pictures from the birthday party that I will put in as an album as soon as I find a USB cord that has that small connector at one end.

The big news for me today was that I got an email from the man who donated stem cells to me.  My donor's name is Jay.  I have invited him to the website and so you may be seeing comments from him here.  He is 37 years old and lives in MO.  I told him in an email about how powerful his stem cells are.  They wiped out my leukemia in about two week.  I saw Dr. Cutler today and he confirms that the possibility of my having a relapse now is very remote.  I also told Jay that my body hasn't been all that welcoming of his cells.  The graft and the host (me) have been in a battle for almost two years not.  It seems that they (we) are achieving some peace.  Cutler does not think I have any graft-vs-host now.  When I get to September the danger will be mostly past though I will never be completely out of danger.

It is easy to get on the donor list with only a blood test.  But if you are the one in a hundred thousand who is a match, the donation process is anything but trivial.   The usual process is to get injections for a week or two to increase your stem cell count.  Then there is a "harvesting" which is like dialysis.  They pump your blood out of one arm and remove stem cells from it and return the blood to the other arm.  Like dialysis it isn't particularly painful, but it is not in any way pleasant.  I'll let you know what Jay had to do, or maybe he will post his experience here.

Daniel has just about finished all the final work on the houses in NC.  He worked with our rental agency to get rentals starting Saturday (we had them blocked until Memorial Day).  Income is good.  He has been working around the clock.  I hope he will get some sleep before starting the drive home tomorrow.  Please keep his travels in your prayers.

Did you notice that I found a way to put a monthly archive in the left column of the blog?  I wish that it popped up a calendar for the month you choose like the current month is displayed in the sidebar.  Instead it simply takes you to the posts for the month you choose with the last posting presented first.  I still intend to complete the job I started called "pre-transplant blog history"  by bringing it up to date.  Clicking on a month in the blog history takes you to a word doc where I have summarized what was happening that month and included links to all the individual postings.

Tomorrow I'm off to do more shopping.  Yesterday I bought a dress, yes a dress, for the garden party next Wed.  I also bought at SKIRT to wear to graduation. I was happy to see that a size 16 was far too big for me. These are the first skirts I've owned since we lost all our stuff in the fire.  I replaced the business wardrobe I shipped from Palo Alto with a most utilitarian, slacks only wardrobe from Lands End.  I supplemented that with PJs for the hospital.   

I'm thinking about some girl shoes, but that is probably a bridge too far for me.  I think I have some nice flats that will do fine with the skirts.

Love to you all, 
Bonnie for BanD

FINISHED!

I flew from NC to Cambridge yesterday.  Daniel felt he needed more time to get our houses ready for summer rentals, but he did not want me to miss my last session of Group Spiritual direction Thursday am.  He suggested that I fly back to Cambridge, and I eagerly took him up on the suggestion.  I have been in my house robe all day, diligently attacking the last two of my writings in order to graduate.  I'm pleased to announce that I am FINISHED.  I have completed all my graduate requirements, and I'm looking forward to wearing that funny hat next Thursday. 

We had a great time in NC.  I'll post some pictures from Abigale's first birthday party.  She had a ball.  She is such a little ham; she loved all the attention.  Both Zac and Luc cried when we sang Happy Birthday on their first BD.  All that staring at them drove them to tears.  Ms Abigirl on the other hand loved everyone looking at her.  She smiled and waved and tried to join in the singing.  More on this topic later when I have pics to show.

When we actually looked at our summer rental reservations we learned that the house we are moving into is available on Aug 17th and we were able to move Sept renters so that we take possession for nine months beginning on that day.  This has led us to change our travel plans a bit.  We had expected to do our BBQ tour of Texas the second half of August.  Now it looks like we will be in Texas the first two weeks of August and will fly to CA for the Interval reunion and to see CA friends and family in the middle of September.  Melanie recently wrote that Houston was 68 degrees on Cinco de Mayo.  I didn't know it was EVER 68 degrees!  I remember it being in the 70's even in the winter.  (See Melanie's comments about Texans being ambivalent about Cinco de Mayo in her post under the comment called "Home Again in NC."  "Home Again in NC" initiated a great conversation about parents driving and parents driving us crazy.  The url directly to that conversation is:  http://stillthinking.typepad.com/bonnie_recovery/2008/04/home-again-in-n.html).

I expect it will be 98/98 (degrees and humidity) when we are in Texas.  Ugh.  But it will be great to see all of our friends.  I'll be writing Texas friends again to find out what your early August travel plans are.  Daniel and I plan to leave Cambridge as soon as we can; we have to vacate our apartment before July 31.  We hope to be out by the middle of July and travel to Texas via Chicago and Colorado.  Oh, Texas friends, look for email from me about our revised travel plans.

And speaking of Texas friends, Betsy posted a message as a comment on that same "Home Again in NC" conversation that you might miss.  She says:

Hi All, It's Betsy. For 9 months I've been working to get credentialed to work on military bases with all the post traumatic stress vets and families you hear about. It has been mired and I'd about given up. Having spent the last week co-ordinating an extraordinary international conference on Integrative Oncology....I got the call YESTERDAY that they want me SATURDAY....yes THIS SATURDAY in Fort Bliss?????? Texas outside El Paso. I said "yes"....... I'v been gone past 10 days with conference....now I madly pull my life together to go to a place I don't know, reporting to people I don't know, doing what I don't know. "Mom is on the way back burner"......

I leave Saturday for Texas. If anyone knows El Paso or anyone there or anything else let me know. Or send prayers. I will do all I can to be present and listen and let god work! blesings to all, betsy

Betsy, I will definitely keep you in my prayers.  I'd love you to post anything you have from your Oncology conference.  If you email it to me, I'll make a regular post of it to which people can comment.  I don't know anyone around El Paso, but suspect that others here do.

I am thinking of changing the BLOG program I've been using in September.  I will be "graduated" from two years of post transplant illnesses by then and expect (she said foolishly) to be a "well woman."  We have much to discuss about illness, medical practice,Texas and stuff.  I'm looking for a program that allows more interactivity, with everyone able to post original messages and not simply comment on messages initiated by Daniel or me.  I know that Daniel will be able to find a good program, but we'd both appreciate any suggestions you have.

Bonnie for BanD

Ah, life at the beach

We are here for less than  two more weeks. I have doctor’s appts as soon as I return. Margery and Bev (Daniel’s Mom and Sis) arrive over the weekend for a week. We are thrilled that they will be there for my graduation ceremony on May 15^th.

Yes, at last I am graduating. I have finished and submitted all but one paper. I celebrated sending in my last two papers. The end is in sight. I have been so weak over the last month I worried that I couldn’t finish my degree in time to participate in graduation service. I am confident now that I will.

I will get what is called a MATS (Master’s of Theological Studies-a two year program). This is not an “ordainable” degree. That would have been a three year program. I had plans to do that degree when I was diagnosed with a relapse in 2005. After considerable prayer, we call “discernment” I understand that God does not have ordained ministry in mind for me. Rather, I will become active in our local Episcopal church in Southport. This area has ballooned with active retirees; the church has 600 members and only one paid rector. There are several retired priests who belong to the church and help out with the Eucharist. St. Philips also has a wonderful deacon (in the Episcopal Church this is not a paid position). I have met with the rector The Rev Barry Kubler; he was enthusiastic about my wish to begin a spiritual director practice there and also help out with hospital work, adult ed, and other pastoral care. I am very enthusiastic about what I can do there. It is a lovely and active community. After four years I still miss All Saints’ the church where we belonged in Palo Alto. I am beginning to reconcile myself that moving on is ok.

Daniel is becoming quite the barbeque master. Check out this picture of the ribs he was smoking overnight. He also is smoking two pieces of shoulder for “pulled pork.” We are having four guests for dinner; we’ll have enough barbecue for a week. He took barbecue to a party while I was in Cambridge; I hear that his sauce was judged better than the commercial brands. People are still talking about the meat. Last night he was up until midnight trimming the ribs. The ribs he cooked had none of the fat you see in this picture.  He was up and down all night checking on the smoker. His barbecue is terrific. Wish you were here for some.

The day after I wrote in March that we were on our way to settling the Wells Fargo foreclosure we had a sheriff knocking on the door to serve us another foreclosure notice. The Wells lawyer said it was a mistake and that someone he didn’t know in his law office had done that second court date. Still, it took him a month to cancel that court date. During that time Daniel met a Wells exec at a barbeque place in Raleigh. (Yeah Barbecue) That exec has set us up with a high ranking person in Wells customer service here in NC. Ron will be working with her – once he gets her to return his daily calls to her. I have been pretty upset over the last two weeks as the April 29tth court date approached.

We leave NC from Wilmington AFTER we vote in the NC primary on the 6^th. This election will be decided by the super delegates. My bet is that the super-delegates will split along gender lines. Does anyone know what the gender split is among the super-delegates?

Love to you all, Bonnie for BanD

Home again in NC

I have begun to call NC "home."  When I go to Cambridge now, it is a bit like going to a hotel.  I was in Cambridge over the last few days to see Cutler (transplant doc on Friday and both eye docs on Tuesday).  I seem to be over the pneumonia.  I am very very tired (how often do I say that?)  Cutler says it is because I'm decreasing the predisone very fast.  I'm down to 10 mg a day now.  This morning I slept straight through till 10.  I haven't done that in a year.  The eye docs are concerned that my left eye is in danger of "melting" again.  Yuch.  They won't talk about when I might get some vision in that eye, but only talk of saving the eye.  They are beginning to talk about the next operation.  Thankfully they agreed to let me come to NC for this last three weeks until May 6.

I've been in "student mode," spending every possible hour working to complete the two courses I'm taking.  I have finished all the work for the Ministry to the Elderly course and have two papers to do for the New Testament course.  I have been ignoring the phone and email; it was good to spend time by myself and just write, write.  I got to spend an evening with Sue Cromwell and her family, and also see her as deacon on Sunday at Christ Church Cambridge.

Just about the time I was writing that we were not in foreclosure with Wells, though the paperwork and check had not been worked out, the sheriff came to our  door with another  foreclosure announcement.   The  Wells  lawyer said  he didn't know who did this foreclosure, and it was a mistake, but in two weeks with our lawyer contacting him most every day, they have not recended the April 29 foreclosure court date.  This makes me more than a little nervous.

It is sunny with calm winds here today.  I'm looking forward to drinking in this beach experience.

In the post below, Betsy says she may start emailing us because she seems to be the only person making public comments here.  Betsy, please don't.  I love your comments here and I others do too.  Melanie, I will be commenting on your wonderful Easter comment.  I am taking all the excuse I can for being a graduating scholar who spends much (too much) time just working on graduation.  I have to say it isn't graduation per se, but the opportunity this gives me to research and write on a couple of topics I know will be important to me in the future.  I could do less in these courses and still graduate, but I know I won't go back to these topics with such vigor in the future.   I have finished a 55 page case study  with  a theology of ministering to  elders.  Now I am tacking John Dominic Crossan and "who is  Jesus?"   Here is a quote from Crossan that speaks to me and may to you also.  It is from an article he wrote for Christian Century after his 1991 book The Historical Jesus was published.  Jesus is speaking to him:

"I've read your book, Dominic, and it's quite good.  So now you're ready to live by my vision and join me in my program?"

"I don't think I have the courage, Jesus,  but I did describe it quite well, didn't I, and the method was especially good, wasn't it."

"Thank you, Dominic, for not falsifying the message to suit your own incapacity.  That  at least is something.,"

"Is it enough, Jesus?"

"No, Dominic, it is not."

(Jesus A Revolutionary Biography, p. xiv)

Love to you,  Bonnie for BanD

Recovering Bonnie

Don't I have a great PR guy!  I love how Daniel tells my story with such heroic flare.  I didn't feel very heroic getting out of the hospital; it was just tiring.  But I was determined once I saw the opportunity was available to make my scheduled return trip.  One might say that I am cheap and did not want to waste an airline ticket (Spiritair is cheap travel UNLESS you have to change any part of your reservation).  It might also be said that I wanted to get here to NC to see Zac's soccer game on Saturday.  And it is true that I was eager to see the beach house that Daniel has been remodeling.   The real reason that I HAD to make that plane was that the alternative was for Daniel to drive to Boston for me, stopping at his high school girl friend's birthday party in Philadelphia.  We had planned to go to that party together when I mistakenly thought that it was March 21st and not 28th (so much for blind people's reading).  I certainly did not want my trophy husband surrounded by all those former girlfriends.  I had to hustle to make the plane so he didn't need to leave Oak Island..

On Wednesday I was out of bread in Cambridge and decided to make bread for my morning ritual of toast and apple butter.  I made the dough on Wed night and got up at 5am Thursday to set it to rising and then baking.  After toast I was able to go to chapel where we baptized the baby daughter of a fine friend, Hall.  I love those baptisms and the renewal of life they bring.  I was scurrying around to get packed when Sue came over, made us tuna fish sandwiches with the fresh bread, and then kindly drove me to the airport.  I arrived in Myrtle Beach yesterday evening where Daniel took me out for a fine grilled fish meal and a big margarita. 

In a little while we will be going to see the "new" house.  I can hardly wait. 

I am wearing the big contact lenses in both eyes now.  They relieve a lot of pain.  I was reluctant to start using them, but the eye doc was pretty insistent and Daniel really wanted me wearing them.  They were right again.  I've lots of school work to catch up on, and I'm looking forward to it.  The ocean is beautiful and all is well with the Shurman-Johnson family.

Love to all, Bonnie for BanD

Bonnie is out of the hospital, and working on her eyes and regaining sight.

Bonnie received oxygen while she was getting intravenous doses of antibiotics,  And true to form, Bonnie's fever fell, and she began to feel better.  Having the right amount of oxygen in your blood stream sort of helps. 

What is new, is that this time Bonnie seemed annoyed to be incarcerated in the hospital for yet another Easter.  What happened to our unflappable Buddhist-like Christian Bonnie?  I can tell you.  Bonnie put on her German-Jew hat:  She became determined to make her Thursday plane back to NC to see her grandchildren and her ocean and her husband. 

On Tuesday Bonnie convinced her doctors that she was just too healthy to be lingering in such a disease prone place as a hospital.  She pleaded her case, stating that she had an important  appointment with her eye surgeon over at Mass Eye and Ear on Tuesday afternoon.  So Bonnie was sprung free from BW hospital.  She made it over to see Dr. Colby who removed the stitches closing her eye and removed the sutures on her eyeball that were holding the placenta tissue over Bonnie's cornea.  Can you imagine wanting to race from a hospital to getting stitches pulled out of your eyeball? 

Bonnie is now over at the miraculous Boston Foundation for Sight getting fitted for her new scleral lens to protect her delicate newly implanted cornea.  She is told that in 9 months we will know if she will have any useful vision in that eye.  How did she get to her appointment with the lens doctors.  She rented a car from Enterprise and drove herself out there.  Tomorrow she will drive herself to the airport and fly back home to NC.

It is fun to see Bonnie in her determined German-Jew independent woman mode. 

As we say during Grace as we go around the table.  Yea GrandBee, Yea God.

/Daniel for BanD

Easter - Bonnie running a 103 fever - going to BWH Emergency room to be admitted

-----Forwarded Message-----
>From: Bonnie Johnson <johnsonbca@yahoo.com>
>Sent: Mar 23, 2008 12:19 PM

>To: Sue Crommelin <scrommelin@eds.edu>, Daniel Shurman <shurman@mindspring.com>
>
Cc: Christi Humphrey <chumphrey@eds.edu>, gale yee <gyee@eds.edu>, jetmlm@bellsouth.net

>Subject: I'm heading for the hospital emergency room
>
>Excuse the format of this, I can't seem to get my eds mail to load.
>
>I'm running 103+ temperature and Doc Cutler is admitting me for intravenous antibiotic. 
>
>Daniel needed my laptop in NC, so I'm heading to the hospital with minimal facilities to keep up with my school work.  I don't know what will be happening, but hopefully it will be a short stay.  Gale and Earl, I will keep up with classes as best I can this week.
>
>Christi, would you let Madeline and others in our group know I can't be there tomorrow.
>
>Sue, I'll call Bill and cancel our Wed meeting with him.
>
>I have my cell phone and a charger.
>
>What a way to spend Easter!
>
>Love, Bonnie

Quite a Pilgrimage for Bonnie given her recent Easter contemplations.

/Daniel for BanD      

Good Friday

Good Friday

Good Friday and the Saturday following is a time we pause and contemplate death and suffering.  I wrote on Thursday about the loss of Bill Buckley.  Two wonderful women in my life died recently.

I am grieving the deaths of my friends Rosemary and Diane.  Rosemary lived a long life, one that all who knew her admired. She had the same kinds of travails that life entails, but as long as I knew her (about ten years), she guided her life like an angel. She was very active at All Saints’ until she moved to Palm Desert to be near her daughter a few years ago. I regret now not calling her often. Those are the regrets we face when it is too late to do anything about them. She retired from a teaching career and opened a nursery where she specialized in flower for special occasions. She was a flower in all senses of the word. I was only beginning to learn about spiritual direction when Rosemary and I lived near each other and saw each other often. I knew that what I was getting from Rosemary was spiritual direction in so graceful and beautiful ways. My life is diminished by her moving on.

My friend Diane did not have the opportunity to live her whole life. She developed a fast growing cancer in her early 50’s. I knew Diane through a group in Silicon Valley we called “the culture club.” We were a bunch of internal and contract consultants that worked with organizations to revive their cultures, especially using information technology. I was mostly an internal consultant; I had a salary. Diane was a successful contract consultant. I always admired her ability to make her own way and to provide value to clients that kept them coming back for more. I don’t know much about Diane’s last days. I hope that she came to peace with her premature call to heaven. I suspect that she did because she was always peaceful and confident in her life. Her grace was an inspiration to all who knew her. Like Rosemary, she found peace and beauty in maintaining an amazing garden. Her memorial service is being held at her favorite garden shop. Wow. 

As we approach Good Friday, as Christians or not, we encounter questions about the death of Jesus. I am not of that school of Christianity that holds that Christ had to die to redeem us from original sin. The gospels are pretty clear that Jesus was a prophet of the first century, calling people to admit and repent from their sins. He refused the claim that dietary laws and other rituals had anything to do with repentance. He spoke for the poor. He taught us that the first will be last, and the last first. And for these radical ideas, he was killed by those who thought his revolutionary theology would bring destruction to Jews living under Roman rule. To the last, he called those of his generation to stand up against oppression. And to this day, this is the meaning of Jesus crucifixion. C.S. Lewis observes in a fine little book called Mere Christianity that one meaning of Christ’s death is an example for all of us about how to die. God, being God, had no experience of death. By taking human form, he could die as a human and in so doing show us how to die. The path of Jesus to death is integrity and courage. 

Daniel's Blog

March 20^th is Maundy Thursday, the day on the Christian calendar where we recognize the founding of the Eucharist/Lords’s Supper. Many churches also have a ceremonial foot-washing by the clergy to celebrate the servant function of church officials. I think of it as the last day of Lent, but I’m not sure that is canonically correct. The day became a favorite of mine the same year as Ash Wednesday, the day that begins Lent. I’m not very fond of Lent, but these two days which call our attention to the facticity of death are days of comfort in my life.

While at All Saints’ in Palo Alto, I would pray for hour in the chapel as part of the Maundy Thursday vigil, usually from 3-4 am. It was a precious time talking with God. I experienced miracles from my praying. I continue to take the time to “stay awake for one hour” with Christ on this night.

This end of Holy Week is the most solemn time of the Christian year. Good Friday is tomorrow. This year, I am saddened by the deaths of friends.

Daniel’s friend, William F. Buckley died recently. His passing touched Daniel more than I had anticipated. He immediately wrote a memorial which was published on the National Review website. It is a touching remembrance told from a perspective that few people had. Most know Buckley as an ultraconservative, combative guy and suspect that he had to be rude in his personal behavior. Nothing could be further from the truth. Daniel speaks of his humanity and his zest for new technologies. You can find that remembrance on Daniel's discrete weblog - www.danielshurman.com.  It is the last of five posts and is called “Bill Buckley’s Uncommon, Common Kindness”.

I recommend reading all five posts on that blog. Curiously, Daniel started this blog on Oct 14, 2005, just one day before I got news that my blood levels were extremely low, indicated a relapse of leukemia. I was quite confident that I would never have leukemia again and thought my tiredness was some kind of residual heart condition. How could Daniel have known when he did that writing on Oct 14^th that we were on the brink of a whole new adventure starting on the 15^th? Over the next few days he wrote elegantly of our position and my condition. In the middle of November, Jewish-raised Daniel had a remarkable dream of Jesus that guides his life to this day. He wrote about that in his blog too. It is some of his best and most intimate writing. Good reading in this Holy Week.

After Daniel's Dream of White Light / Christ posting in November of 2005, our attention turned in a more focused way onto me. The first posting of this blog was December 7. Daniel started writing here in part because I was often unable, but mostly because this writing is a source of comfort for him as well as for me.

Awaiting Good Friday,

This is Bonnie for BanD

House Renovations, Ocean, NC BBQ and Grandkids.

We are up to our favorite things:  House Renovations, hanging out at the Ocean, cooking North Carolina BBQ and seeing our Grandkids.

The ocean goes from raging and thundering with lightening overhead in the night, to a mirror-like lake in just 48 hours time.  The air is cool and the sun warm. 

The "other" beach house renovations are going well.  I loved getting the house ripped to it's studs and all of the wet fiberboard and insulation pulled, so we could repair a few rotten studs.  We jacked the house up and got it to within 1/2" of  level.   Not bad for a house that sits on piers sunk into sand.  This house has which been facing the ocean and hurricanes for over thirty years and it had begun to sag sadly.  We replaced the bottom 2x10" band.  Then we bolted some 6x6" supports under the bottom band to brace up the house and strengthen the decks. 

We are hanging in here

The beach is beautiful; the temp was 70 yesterday.

Both Daniel and I have colds that are weighing on us.  Daniel continues to do a fine and fast job of the retrofit of the other beach house.  Looks like we will be finished before schedule.  He is working his team and being pleased with the work they are doing.

I'm struggling to keep up with my online courses.  There is no "late paper" in an online course;  you have to contribute to have the conversation among students be meaningful.  Yesterday was exhausting for me, but I did manage to get my postings done for both courses done today.

We had both boys here for two nights and three days over the weekend.  We celebrated my son Ron's second 100 mile bike ride for Leukemia. I wore the shirt Ron wore last year.   Ron sent updates of his ride from his iphone.  We sent these pictures to his phone.
Here are also pictures of what the shirts said on the front and back.
 

On our way to NC on Tuesday

This is a short post to say that the eye doc is pleased with the progress of my left eye.  The stitching closing half of it is still in place though, as expected, the placenta is mostly melted.  She left it stitched and said that we can go to NC for three weeks, returning here for an appt on March 25th.  We intended to go after we see Dr. Cutler this afternoon, but we are tired and have decided to go on Thursday morning.  Progress goes well on the house we are having resided in NC.  The old siding is gone along with the soaked "sponge" board.  New insulation and hurricane clips are in place. 

I have much to tell you about, but it will wait until we have arrived in NC.  Daniel wants to drive all night to put us there on Wed. 

Love to you,
Bonnie

Posting from Cambridge

Thank you for all your emails and phone calls of concern that we have not posted in TWO weeks, yikes!  We are as OK as we might be.  Here's a quick synopsis of what we've been up to.

We had a VERY fine, though short, time in NC.  We got to keep Zac and Luc overnight on President's Day.  And we went on Tuesday to see Zac sing with all his first grade at a little school recital.  On Wed we saw the lawyer on the foreclosure issue, and we had contractors come to look at our other house to get bids on painting and minor repair. 

We discovered that the window trim had not only rotted, but had let water into the walls, rotting the siding.  It was of course discouraging to hear that we would have that additional expense.  Mary Lou and family are arriving to occupy the house at the end of the month.  Yikes.  However, we got bids and have engaged our good contractor who has already begun to tear off the 30 year old siding, put in new insulation, sheer wall, and vinyl siding.  We even have a permit already!  Things are looking good for now on the renovation front.

We left Oak Island at 4pm on Wed, planning to drive as far as we felt comfortable driving.  We were rolling along with a beautiful full moon. 

In the North Carolina Beach House tonight - 3 grandkids tomorrow.

Bonnie asked her eye surgeon if she could fly to NC for a week to see her grandkids, now that her eye is safely sewn shut.  The doctor hesitated, but said yes.  Bonnie was so happy she could hardly get to sleep last night. 

When we got to the Beach House she crawled into bed and was asleep 10 minutes later.

Bonnie was radiant at dinner.  She had arranged tomorrow's ferry trip to go across the river to see 3 of our grandkids and setup Sunday brunch at a good old pancake restaurant at the beach on Jennifer's side of the river.  Later we go to watch the kids play in their own environment.   Bons has us bringing the boys, age 6 and 2, back to our house for the night.  Monday being a holiday, we get to keep the boys at the beach until Mommy Jennifer gets home at 4PM. 

Tuesday we work with the lawyer to see what has to happen to get Wells Fargo their check for $2653.69 and to stop the foreclosure.  This is so dumb it defies logic. 

Later we get bids on painting the other house inside and out, and replacing the wooden window trim that the ocean has eaten into and is causing to rot in just 5 years.  We also have to replace the Central A/C as the effects salt air has finally brought it to a halt.   The forces of nature 70 feet from the ocean are amazing.   So is seeing dolphin swim by and loggerhead turtles climb ashore to lay their eggs.  A few months later the hatchlings crawling back into the sea under the light of the full moon. 

Wednesday we begin our 2 day drive back to Cambridge for a check up with the eye surgeon early Friday morning. 

Life here is good.  Thank you for your prayers, kind thoughts and e-mails

/Daniel for BanD

The surgeon says Bonnie's 4th eye surgery went well.

Dr. Colby says that Bonnie's 4th eye surgery went well.  They were able to glue and stitch in a tissue from a human placenta and then sew a third of Bonnie's left eye shut.  We will go to see the surgeon tomorrow at 8AM to check on how the surgery is holding.

Bonnie was cheerful enough and loving today.  But I can see that this is all wearing on Bonnie.  Having to fast for 12 hours and having yet another surgery and recovery period is just getting old.   

The anesthetic did not completely block Bonnie's vision nor numb her eye this time.  Her eyes are very photosensitive.  The light for surgery was very intense and inescapable.  Bonnie says she felt some of the stitches being put in to close her eyelid.  She said all of this matter of factly, as if reporting on something she read in the New York Times.  Then she asked "When can we get out of here?  Do you want Chinese for dinner?"

But her tough Texan thing is eroding.  She was crying out loud and moaning her sleep just now.  I reached out and touched her and was able to settle her down without awakening her.

My bonnie Bonnie has had quite enough of this now. 

Hello, God, can you hear me.  Dyanu. Dyanu, Dyanu!

Dyanu being Hebrew for "enough" as in "enough blessings"

Speaking of "enough",  would you like to hear the current state of play on the Wells Fargo Foreclosure mess? 

I'm set for surgery on Thursday

Dr. Colby is concerned that my left eye might precipitously "melt" because the epithelial layer has still not grown over the whole cornea, though it did grow well since Friday.  She has had good experience gluing and stitching a human tissue (from a placenta) as a covering on the cornea.  She will stitch my eye mostly shut for two or three weeks.  It will be ugly, but I can live with that (with my pirate patch in public).  Surgery is at 2:30.  I will have a "block" as I did for the last surgery; I'm not afraid of that anymore.  Dr. Jacobs (one of my contact doctors) assures me that this is just a covering and that we should not be concerned about another human biology introduced to my system.  The pre-opt doc reminded me this is very minor surgery.  Daniel is staying in town another week to be with me.  Your prayers are very much appreciated.

I Need a Miracle Everyday

 So go the words of a famous Grateful Dead song.  I may not quite need dynamite to get me up in the morning, but in the evening a bit of dynamiting might help me stay up past 7pm!

Events and conditions of my life in this world aren’t quite to the level of Job, but have that character.  On Valentine’s Day I’m scheduled for my fourth eye surgery at 2:30.  Dr. Colby will be putting a human tissue from placenta as a covering on my left eye. It will be glued and stitched and then she will sew the eye lid closed for two or three weeks.  She will re-evaluate her decision about the surgery on Tuesday.  The epithelial layer was smaller on Friday than the previous Tuesday.  Eye docs believe that if a patient is not getting better, she is getting worse.  I understand that the problem is that my eye has been uncovered too long and we cannot wait longer.  Please pray with us for good progress on epithelial tissue growth so I can avoid this surgery.

At 3:30 on Valentine’s Day we have a court date in NC on our precious beach house, the one we’ve so lovingly remodeled and have loads of our cash invested in.  Wells Fargo is authorized to deduct mortgage payments from our bank account and to increase the deduction to cover increases in taxes and insurance.  We upped the insurance on both our houses there, both mortgaged by Wells Fargo in what are identical loan agreements.  Wells increased the withdrawal amount for one house but not the other.  I check each month to make sure that the payment is being made, but frankly didn’t pay any attention to the fact that one withdrawal had gone up but not the other.  Wells sent Ron (in whose name the 4923 loan is listed) several form letters and left a couple of garbled messages on his answering machine with inadequate call back information.  Wells Fargo sends out an incredible amount of marketing materials.  Not imagining that anything could be wrong, Ron ignored this communication. 

Eyes and Ears, Tongue and Throat, Head, Shoulders Knees and ....

Our grandkids sing a song that teaches them to point to their Head, Shoulders, Knees and Toes, Knees and Toes, Eye and Ears and Mouth and Nose.

The only parts that are not causing Bonnie pain or some distress today are her toes.

We hope to see what can be done for the growing sores in her mouth, on her tongue and inside her cheeks.  Her throat is now sore;  It hurts to chew, it hurts to eat.  Cooking and eating have been Bonnie's great focus and relief.  She uses it as her in-life zen practice, though with more joy than maybe allowed in some zendos.  Cooking is a form of exercise to keep Bonnie on her feet and ahead of the Prednisone.  Eating is keeping flesh on her bones.  I see that Bonnie is eating defensively, against her fear of another period when she can not eat.

This morning we saw her eye surgeon and based on her fellow's (resident) exam report, Dr. Colby started out by saying she thought we would have to do another surgery to stitch human tissue (placenta) over Bonnie's cornea and then sew her eye shut.  We were both silent, like contact bridge players.  Neither of us were buying more surgery. 

Misery!

It has finally happened.  After more than five years of being sick, I’m now miserable with pain:  in my eyes, my mouth, and well all over.  I’m grateful to have gone so long without this, and now I will cope with it.  My eyes will heal and that pain will be gone.  The sores in my mouth are getting worse, but they will get better eventually.  I have both mouthwash and prednisone pills to fight the graft vs. host causing the sores.  I’m facing the challenges of so many people who are ill, the challenges of pain.

Long Road Ahead

It looks like we have a long road ahead of us as Bonnie works to recover from the surgery in her left eye.  Fortunately, after the third emergency surgery, it appears that Bonnie's cornea transplant is holding.  The epithelial cells she needs to grow are filling in on the area that was not healing.  The cornea surgeon and cornea specialists Bonnie sees several times a week are guardedly optimistic that the graft will succeed.

As the Graft vs. Host Disease appeared to be attacking the new cornea graft, the doctors conferred and agreed to increase her Prednisone back up to 60mgs. per day.  This is reducing the muscles in Bonnie's legs and arms, but hopefully will save her cornea and heal the sores in her mouth.

Bonnie has debilitating headaches almost all of the time and her operated eye continues to hurt despite all pain medications.  She snuggled against my chest for comfort last night and to try and get to sleep.  I can feel her tremble and shudder slightly as she copes with the pain in her eye and head.  She amazes me by how clever she is at finding ways to deal with the pain and manages to keep a sense of humor much of the time.

Bonnie's Post Surgery Report

Greetings from Snowy Boston,

I’m doing ok after surgery.  We saw the surgeon on Sat morning.  Dr. Colby’s assessment is that the rest of my epithelial layer will likely heal now that it is well secured.  It is less painful than before the surgery; I think it must have had a bit of flap when I didn’t have the lens on.  I am wearing a soft “bandage” lens now instead of the big contact.  I wear the soft lens 24 hrs a day.  I’ll see Dr. Colby again on Tuesday.  She says I’m “not out of the woods” yet.  If my eye doesn’t heal, she will do more surgery, this time putting a human tissue to cover my eye.  She was pleased that I have as much coverage as I do.  Her recommendation, with Dr. Cutler’s consent, was that I re-up my systemic steroid dosage to 60 mg from the 40 I had been taking this week.  Her assessment, like that of Dr. Jacobs, is that systemic graft vs host is the underlying problem.  I thank Daniel for getting this increase in dosage to happen.  Both Colby and Jacobs had been talking to us about systemic GVHD, but neither initiated communication with Cutler about increasing the dose.  It was Daniel who raised and pursued the issue with Colby.  Colby has really been an initiator on other matters, and so it was funny that she was not acting here.  Thank God for Daniel who moves rather than just thinking.

The surgery itself went well.  They gave me what they call a “block” and compared it to how one gets numbed for tooth work.  My eye was covered when they did the actual blocking, so I don’t know how it was done, nor do I want to know!  The great thing was that it cut off all my vision.  When I had the first surgery done with numbing drops I had to tolerate a bright surgery light.  With this block, all I could see was black.  With the relaxing medicine I got by IV, I was in a cheerful mood, talking with the doc and feeling no pain.  It was funny that even the top of my head felt numb for as much as eight hours after surgery.  I’m already anxious about how they are going to take out all the stitches, but I’m telling that I’ve had good experiences with all the surgeries so it can’t be that bad.

Third Eye Surgery.

Bonnie's mystical third eye does not need surgery. But her left eye did develop a "small leak" requiring Bonnie's third emergency eye surgery in 15 days.

Dr. Colby says Bonnie's left eye is only leaking around the 1 o'clock position; It will only take 2 stitches to secure.  We can do surgery at 3PM.

Bonnie is being anesthetized for her third emergency surgery as I write. This surgery should seal a leak in the seam between Bonnie's original cornea and the new graft.