Bonnie Recovery

Still Crazy (and Smiling) after All These Years

Wasn’t that last post of Daniel’s lovely?  What a guy!  This November we’ll be celebrating our 21^st anniversary.  That is something of an accomplishment considering both what we have faced and what rugged individuals we are. Our circumstances and our personalities have created stresses in our marriage, but our love holds us together.  As I’ve thought about love and marriage, mine and others, I have come to believe that what holds us together is our appreciation of each other and gratitude we feel that we found each other.  As long as we have that gratitude exceeds our difficulties I expect we’ll continue to surf successfully the tides of long term marriage.

I was observing to Daniel that this is the longest time we have been apart.  He sort of laughed and reminded me that while that may be true for me, I was in a coma almost as long as he will be in California.  Sleeping through the separation is yet another reason I’m thankful for my coma.  It allowed me relief from all kinds of pain and trauma.  I am reminded from time to time however that Daniel, Jennifer, and Ron went through that trauma and all have some residual pain from the experience.  I can only hope that they are recovering from those experiences as fast as I am regaining my ability to walk.  I’m not well, and neither are they, but life does have a way of healing.  I’m hoping that Daniel’s time to be Daniel in California will help him heal and that being with Jennifer daily will help her.

 I took the ferry to Southport on Sunday to attend my church there.  Rev. Barry greeted me as a miracle.  I’m a bit embarrassed by that and yet I know that part of God’s purpose for me is to witness that miracle.  In 2003 after my first rounds of chemo, heart failure and dialysis, I asked Ken Ireland what one should do who has been blessed with such a miracle.  His response:  “advertise it.”  I’m trying; Lord, I’m trying!

 

Life is sweet for me here in Wilmington.  Zac left with friends for an overnight trip to Myrtle Beach.  This morning before he left we bought and put together a house for the Hermit Crab he captured yesterday at the beach.  Putting together that plastic crab house was such a pain.  At times Zac was crying in frustration.  I realized how wonderful it is to be as free as a child to express anguish and frustration that way.  I wish I still could.  Maybe I’ll try.

Love to you,

Bonnie for BanD

 

 

What do you appreciate most about Bonnie?

I am in sunny, fragrant California.  My spiritual home.  Bonnie is in Wilmington taking care of her grandchildren, and writing her chapters in our book.  Uplifting days for all.

I just came from my mother's home where I replaced her 20" iMac G4 (white luxo lamp-like flat screen computer) with a iMac 24" screen which is much more responsive to Mom's mouse movements etc.  It is incredible to me that my 88 year old mother is an avid Mac user. 

Anyway, as I now have two weeks "distance" from Bonnie for the first time in many years, it is interesting to see how my mind holds her, and my arms look for her in the middle of the night. 

Nearly lossing Bonnie so many times, and having such close calls in the last year has had me thinking, alot, about Bonnie's essense, and what I find so compelling about her.  

There are her quick turns of mind, and ability to reframe a situation or concept, her sense of humor, grace under fire, baby like skin, smiling eyes, beautiful breasts -- so many different aspects of spirit in a woman's body come to mind. 

Yet, I think what captures me most about our Bonnie, is how she is a den mother to many people in many walks of life.

I think this picture captures the spirit of Bonnie, radiant hair and all.

Here Bonnie is on a Persian rug, reading to our grandson Lucas, who is holding his new kitty.  Luc has two more books in the queue on Bonnie's leg.

Bonnie, teacher and den mother, taking joy in unfolding new worlds with others. 

I love these yous, Bonnie.  /Daniel for BanD

Summertime and the livin' is easy, finally!

Hello at last our friends

We are in Boston this week, seeing eye doctors and visiting friends.  We are staying with Beanie.  Thursday I spent the night with Margi and Daniel with his friend and stereo buddy Hugh.

I apologize for being so long in posting.  My brother-in-law Ben called yesterday to ask what’s up since it has been almost a month since our last post.  I started with a long story that he was able to summarize succinctly, “oh, you’ve been busy.”  We have been busy doing what I call “simultaneously moving in and moving out.”   We finally got all the boxes that we moved into the beach house from the Cambridge move sorted and put away.  All the pictures got hung.  All the cabinet and shelves organized.  And while doing that, all our personal clothes, files, and “stuff” got packed and taken to storage.  I’ve been pretty single focused.  I would get up at 7 in the morning and work through the day organizing, boxing, etc. etc.  Our friend Alice suggested to me that I would save energy if I’d use the wheelchair.   That worked well for me.  The wheel chair also allowed me to carry stuff from one place to another in ways I can’t do with my marginally balanced walking.  Daniel got depressed with all that had to be done.  He was not able to do much until the clutter started to clear - (other than drive me to my frequent doctors appointments, church, my daughters home - oh and buy, carry up the groceries, and cook most of our meals and lift the boxes that were too heavy for me - you know - what I call "not much").   I too found that the more progress we made the more energy I had for what needed to be done next.  By the last two weeks we were both working 12+ hours a day.

Our wonderful therapeutic body worker recommended a handyman Wes who was able to put together the Murphy bed in about half a day.  Once that was done, Daniel and I could see that we were going to be able, with Wes’s help, to get everything done by our June 13^th deadline.  Our school teacher friends, Jayne and Dick started cleaning and agreed to clean both houses weekly through the summer.  They recommended a family that lives on Oak Island to help with moving chores.  Susan came several times to help me work on high places I can’t reach because I’m too unsteady on a ladder.  She cleared closets and organized book shelves.  Her sons Kenny, Danny, and Casey carried our filled plastic boxes to the POD.  Son Eddie and friends helped Daniel consolidate the 16’ and 12’ POD into only the 12’ POD at the warehouse in Wilmington.  Wes, Scott, and Jennifer took my stuff, including a dresser and desk to Jen’s where I will use it this summer.  We did a lot in the last month, and for the first time in our many Oak Island moves felt we had adequate help.

I’ve decided not to go to California with Daniel this summer.  We were going to drive through St. Louis and Texas as well as Chicago.  While my energy has been getting better, the trip seemed too daunting for me.  Daniel will fly to California for six weeks and I will live with grandchildren.  While I’ll miss seeing Midwest friends and relatives, I am excited about being with the Pollards this summer.  Abi will go from saying words to speaking while I’m there.  Zac and I will be together every Tuesday and Thursday; he will go to summer camp MWF.  I will make serious progress on the book on MWF.  Luc and I will do art projects, dance, and go to movies.  Daniel and I will take over our beach house the first week of August; the kiddos will be with us there. 

Aug 5 is Zac’s eighth birthday.  The decision I am most proud of in my life is putting the grandchildren first in my life.  I know that attention away from work, along with the weakness of undiagnosed leukemia, led me to lose my McKinsey job in the downturn of 2002.  I would not have had the job much longer anyway since I left in May and was diagnosed in July.  Even that short time of leisure helped me greatly to adjust to life after diagnosis and cemented my commitment to grandchildren first.  When doctors think I’m dying, I know why I’m living.  I believe that this commitment kept me me alive over all odds over and over.

We spent Wednesday evening with our Cambridge grandson Jackson.  At four he can spell his name.  He recognizes most printed letters, and when he doesn’t recognize a letter right away, like Q, he sings the alphabet song until he comes to the letter, then he remembers it.  He is so cute.  He gave his grandpa the longest hug; I wasn’t sure he would ever let go.  It was so wonderful to see that sight, grandpa and grandson so adoring each other.  That was the highlight of my trip here.

I got a new contact lens prescription.  The folks at Boston Foundation for Sight are incredible.  I have had many wonderful docs, but none that go so far out of the normal course of medicine to take care of men, and the hundreds of patients who come from all around the word to get Scelerial lens that end the pain and blindness of severe dry eyes from GVHT or because their eyelids have been burned off in an explosion in Iraq.

We saw Dr. Cutler and PA nurse Dubeau at Dana Farber.  Like other doctors, they are in awe of my ability to stay alive.  We love seeing how much they loved seeing us and celebrating that I’m alive and even walking.  My NC doctors like me and take good care of me, but I’ve noticed a certain ownership that doctors have who have brought a person through a life threatening experience.  Cutler and Dubeau look at me in ways of joy and appreciation that no others do.

On Monday Daniel flies to Chicago for a few days with his Mom and sister. On Tuesday I see Dr. Colby about an operation on my left eye that I hope to have here in August.  Beanie will then take me to the airport and it is back to Wilmington for me.

We hope that you are having a great summer.  We are.

Love and peace,

Bonnie for BanD

Sight!

Yes, I had the thick cataract removed from my right eye yesterday.  I knew that I was getting more and more blind.  From one day to the next I noticed the decline of vision.  About two weeks ago I lost my ability to read regular print on paper.  Working on my computer was difficult because I had to hold my laptop about 7 inches from my eye even with large type.  It is difficult to type in that position.  I just gave up trying.  As depressing as that was, the darkness and pain from glare were even more depressing.

 This morning I woke up for the sunrise for the first time since last fall.  I’ve been catching up on some long delayed computer tasks such as this update to you. 

 I will need a new prescription for glasses that I will wear when I don’t wear the eye lubricating contact lenses.  Once my eye has healed for a week or so, I will start wearing the right lens as well as the left one.

 What I notice most is BLUE.  I had noticed that I was unable to tell the difference between navy blue and black clothes.  Right after the surgery I could see why.  The brown cataract dimmed my perception of blue.  Blue things are a sort of bluish brown when you have these thick cataracts.  I next noticed the skin on my arms.  While I am grateful to the first lady for defending our right to bear arms, I don’t think I’ll be doing that any time soon.  I simply could not see how scarred my skin is after almost three years of prednisone induced bruises.  Yuch.  Still, I’m glad to be able to see my skin, and also to have arms.

 Three weeks from today we will be out of this place.  We are simultaneously moving IN (unpacking boxes of household goods that came in the POD) and also moving OUT (boxing up all our personal stuff to go to the POD for the summer).  We have a good plan of attack and are finding help for all of this. Tomorrow we go to SEE Lucas (age 3) play wee ball.  I am thrilled that I will finally be able to see more than a blur on the field.

 Sending my love and promising to be in better contact.

 Bonnie for BanD

 

MRSA, Hit from Behind, Cataract Surgery ??

To qualify for eye surgery, Bonnie had to de-colonize her body of it’s MRSA infection.  Bonnie followed a 10 day regimen of shampoo and body wash with chlorhexadine, and an antibiotic applied to her nostrils.  Hurray, Bonnie tested negative on the first of 2 post-decolonization tests.  She still has to test negatively on a second test.

Last week, Bonnie was at the Contagious Diseases Doctor’s office.  I set out to get her lunch.  As I turned into the parking lot of the sandwich shop near the hospital, I was smacked from behind by a pickup truck.  The pickup truck’s bumper caved-in dead center, and it's radiator burst.  The right corner of rear bumper on the Honda Odyssey did it’s "compress and recoil" trick.  My neck did it’s snap forward and snap back trick.  Fortunately my head rest restrained my heads backward motion.

Bonnie had to wait at the Doctor’s office while I waited for the police to write up the accident report. 

I had an excruciating headache, for three days.  The pain from the whiplash was undiminished by 6 Extra Strength Tylenol taken over two hours, followed by 3 Extra Strength Advil and ice placed at the base of my skull.  I had to get up and walk around.  I could not lie down.  I rested my head on a window sill.  Finally I gave in and took an Oxycontin, and an hour or so later was able to go to sleep.  The following day, I went through the same routine, except the first Oxycontin did not work after an hour, so I gave in and took a second one, finally I sunk under the pain into sleep.

Still my first priority was to get Bonnie’s test results for her surgery.  I had to suck it up and drive to doctors appointments in Wilmington, a 5 hour expedition. 

First we picked up the CD of Bonnie’s most recent MRI of her skull (which showed a sinus infection just below her right eye socket).   Bonnie’s new Endodontist read the MRI and an Xray of her #3 tooth.  He did tap tests and cold tests on her teeth and discovered that Bonnie has a dead nerve in the root of her tooth that is most likely the source of her continuing sinus infections for the last 24 months.  Martha Stewart would say “it is not a good thing” to have an infection so close to one’s eye and brain, especially in an immune compromised person. 

To date, our doctors have dealt with Bonnie’s repeated sinus infections with antibiotics.  Only now are we tracing it to it’s source.  Fortunately, Bonnie’s sinus infection is not going to prevent her cataract surgery.  We are on for a root canal next week.  Or as Bonnie’s says, “just the discomforts of the living”.

Two days ago, Bonnie called to get the results of her second MRSA test, which were five days overdue, only to be told that she had tested POSITIVE for MRSA in her second test.   Arggggggghhhhhh.   Do we have to again put off her cataract surgery??

Apparently, this positive MRSA test result did not bar Bonnie from today’s cataract surgery. 

As I type, Bonnie is in the operating room to have the cataract in her right eye removed and a sparkling clear plastic lens inserted.  She may be able to read for the first time in months, in a couple of hours.  God willing and the Creek don’t rise.

Okay, Bonnie just called me in after her cataract surgery. 

Bonnie has a metal patch over her eye with holes perforated in it and she says, “Wow, I can see colors.  I can read that “Purell disinfectant dispenser” behind you.  I had no idea I that I was living in a world without color.  Let’s go get Mexican food for lunch.” 

Sight.  We shall see how much sight she regains in the next few days as the drops dilating her pupil subside.   Praise be.

/Daniel for BanD

Good news - No Rocks in Bonnie's Skull, But her Cataract Surgery is off for now.

We saw Bonnie's primary doctor and got the results of Bonnie's MRI of her skull and brain.  The MRI shows no cracks in her skull, no rocks, and no tumors.  The only issue is "small vessel disease" = hardening of the arteries, which is consistent with being 65 years old.  Bonnie points out that she has spent her whole life filling her brain with what she wants to know, and so she is closed to a brain transplant. 

The good news is there is nothing wrong with Bonnie's head, except that it hurts everyday.  Bonnie is currently chalking this up to "eye strain". 

Bonnie's scleral lens specialist and eye surgeon in Boston sees more patients who suffer from Graft vs. Host Disease in a week than most eye surgeons see in a career.  At our request our Boston surgeon sent a letter sharing her experience on precautions to take for cataract surgeries on people with GvHD, to our local cataract / lens replacement surgeon. 

In one line she mentioned that she routine checks for signs of  endophthalmitis = a post-operative staph infection that shows up one week - five weeks after lens replacement surgery.   Recent statistics show this  staph infection occurs in about 2 out of 1000 cataract / lens replacement surgeries.  Bonnie continues to test positive for MRSA - a virulent form of Staph infection that is drug resistant, and she is on immune suppression drugs to keep peace between her donor's immune system and her organs - as such Bonnie risks are significantly higher.

The risks of endopthalmitis caused our local eye surgeon to reassess Bonnie's surgery.  His nurse called to say that he apologized but operating on Bonnie was simply beyond his skill set and out of his comfort zone. 

Today, we saw an infectious diseases specialist who prescribed a "decolonization" program to get Bonnie's MRSA to go into remission, so she can test negatively for MRSA and be cleared for eye surgery. 

We are communicating with Bonnie's doctors in Boston to sort out where Bonnie can will get her cataract remove and lens replacement surgery done. 

I believe our eye surgeons and GvHD specialist in Boston, who teach at Harvard Med, are our best resources.  They are in condition to recover from endopthalmitis as this is a kind of rescue surgery that is done at Mass Eye and Ear by surgeons skilled at such procedures.  We will figure out how to get Bonnie her sight back. 

We both got massages two days ago and are more relaxed and appreciative of our lives together.   

We love our lives.

/Daniel for BanD

Scans of Bonnie's legs, skull and brain today. Cataract surgery next week?

Bonnie and I have spent most of this week going from doctors office to doctors office across the river in Wilmington and on the phone trying to get doctors in Boston and Wilmington to talk to each other.  All of this to get 2 vital scans completed and a ten minute cataract / lens replacement surgery approved. 

Rube Goldberg cartoons illustrate how current system of medical records and health care institutions "work" together.

Panning from our broken health care system back to the human being, the "patient", as Bonnie is called; In the last 30 days Bonnie's sight has decreased by 3 lines on the eye chart. The eye surgeon and nurse both comment at how surprising and precipitous Bonnie's loss of sight is. 

Bonnie can no longer read.  Even when she puts her nose to the paper or screen she can barely make sense of what she sees.  She is in pain due to the glare of daylight.  She wears an eye patch over her left eye at home and ultra-dark wrap-around goggles over her glasses when we go into daylight.  She reports that her sight is getting worse day by day.  Bonnie is remarkably cool for a person who is truly going blind.  Only once has she confided what it is like to "live in a smaller and smaller private world.  It shrank when I lost my hearing and now I am going blind."   

If both of us were not able to work full time on coordinating appointments, tests and getting medical records from one office or hospital to another, and helping the doctors "all get on the same page", Bonnie would simple sink beneath the waves of her many  medical issues.  

Bonnie has been having headaches every day for the last 6 weeks.  It took close to four weeks for an appointment at the "Open MRI" for a scan of Bonnie's skull and brain.  The doctor wants to see what may be the cause of her headaches. 

Just two days before the MRI, in the pre-exam telephone screening, Bonnie learned that NHRMC needed to have the medical records on her cornea transplant surgeries done at Massachusetts Eye and Ear in Boston last year, BEFORE she could have the MRI in Wilmington.

It is like herding cats to get medical records released and then for Doctors in different hospitals to communicate with each other.   This time Bonnie had to get the right assistant and Doctor at MEEI in Boston to agree to exchange faxes:  Bonnie had to sign and return their medical release form.  Then MEEI had to get the right 8 pages of Bonnie's medical record into the right person's hands at the NHRMC here in NC.  This prerequisite was completed with 4 hours before the scheduled MRI.  

You might ask, what does a soft tissue cornea transplant completed 16 months ago have to do with Magnetic Resonance Imaging of Bonnie's skull and brain today?  Ahh, the paperwork is for the lawyers, not for the patient with the headaches.  Par for the course. 

On Thursday, we got up at 8 AM to be at the hospital for an 11 AM scan to see if the blood clots in Bonnie's thighs, which threatened her newly amputated feet, had dissolved after 90 days of being on a blood thinner. 

We arrived exactly on time, but it took 45 minutes for Bonnie to be re-admitted to the same hosptial that received over $500,000 dollars for Bonnie's hospitalizations since October.  Clearly, hospitals take no clues from customer-oriented businesses or customer-facing inventions, like American Airlines Triple Platinum Flyer program or the Hertz #1 club.  It is NOT like your name is on a large welcome board, listing the location of your car, which awaits your arrival, with it's trunk open and the keys and paperwork at the ready, so you simply arrive and roll. 

Be clear, you are always a stranger in a hospital.  In fact you are nothing, until a clerk  finds some number somewhere and then assigns you the hospital's own bar-coded number, which is printed on plastic and strapped to your wrist.  How better to institutionalize a person?  While we wait to be "admitted", we read the new posters on the hospital walls: "Patients are the most important people in this building".  These posters are clearly a declaration of someone's idealize goal, not an assertion of fact, as most any patient or nurse will readily confirm. 

When Bonnie was "registered" we are escorted to another waiting room, in radiology, which is a bit of a walk for Bonnie on her walker.  After another wait, she is directed to walk about one block to the other end of the hospital for her exam.  When we arrive, we were told that Bonnie had been sent to the wrong clinic - "This is Cardio-Vascular Imaging,  you need to go to Vascular imaging.  It happens all of the time." 

Bonnie was so exhausted from her walk, she had to be wheeled back to the correct lab, with time running out before her 2PM MRI appointment.  Imagine how Bonnie was feeling at this point.  She seemed to shrink in the wheelchair, resting her head in her hands, but she remained calm.  My mind began to sputter. 

The results of the ultra-sound scan showed an improvement in Bonnie's legs but there are still clots in her left thigh.  She will have to stay on Coumadin, which makes her skin even thinner, and her bruises to hemorrhage under her skin.  Yesterday, Bonnie lightly bumped her forearm against the arm of her wheelchair which produced a 2"x2" tear in her skin which bled profusely.  Fortunately, her eye surgery will not be effected by staying on the blood thinner, as the incision is in a non-vascular portion of her eye. 

Good news.  Tuesday, Bonnie made it onto the eye surgeon's calendar for a cataract removal and lens replacement. 1 May is the big day.  Hurray, after 20 appointments to see eye doctors over the past 3 months, Bonnie finally has hope to be able to see out of one eye.

The euphoria lasted about one hour.  Nothing has proven to be that easy.  We discover the Catch 22:  In the pre-surgical screening we are told Bonnie can not have the surgery next Friday, UNLESS she has two consecutive negative tests for MRSA. 

MRSA is a strain of staph infection that's resistant to the broad-spectrum antibiotics commonly used to treat it.  MRSA can be fatal.  Most MRSA infections occur in hospitals or other health care settings.  In fact, Bonnie contracts MRSA, almost everytime she has spent more than a week in almost every hospital she has been in over the past 7 years.  Bonnie has spent well over 365 days in hospitals, with a compromised immune system, over the past 7 years. 

So the rest of Tuesday, we work to produce a record of Bonnie's most recent negative MRSA tests.   We need to get Bonnie's most recent NHRMC / Coastal Rehabilitation discharge records, to show that she tested negative for MRSA when she left the hospital.  We "know" she must have tested negatively for MRSA as it was not on her discharge notes. 

It takes 2 hours to get the medical records, as they are in a different building across town.  Requesting medical records requires another page of paperwork.  When I finally get the record, we discover that there is a problem:  Bonnie tested POSITIVE for MRSA when she left the hospital on January 20, and she has not been treated for it since.  Arrrrrggggghhhhhh. 

Okay, back to square one.  We drive back and forth from doctors office to doctors office, to see who would do the MRSA test and failing that, who would write the prescription for the tests.  Finally, we got the eye surgeon to write the MRSA test prescription.  Then we go to the pre-operative testing clinic next door to the hospital, where we wait for the test.  Our simple "one-hour" appointment with the eye surgeon has become an 8 hour day of running hither and yon to get a simple MRSA test completed.

The next day Bonnie called the lab for the test results, but the lab would not release the test results to Bonnie, even though she has a legal right to her records, and she was able to identify herself by date of birth and Social Security Number etc.  She is told the lab will only release the results to the doctor who ordered the tests, and THEN only IF his office calls for the test results.  Really?  Do you think this the correct reading of the HIPAA laws? No, the clerk at the lab is complying with a "higher authority" = local lab policy. 

Can you see how much bureaucracy, delay, expense and stress could be eliminated with an electronic patient record system - to say nothing of saving 100,000 lives per year by reducing medical errors.  If death by medical error were categorized as a disease, it would be the fourth or fifth leading cause of death in the US. 

Bonnie spent the morning calling and leaving messages.  This afternoon she was begging nurses to call the lab to get the test results.  Bonnie could not get either the eye surgeon's office, nor her hematologist's office to call the lab for the MRSA test results.  Each insisted the other office should call.  I took the phone.  Even I could not get the bulldog of an administrator in the eye surgeon's office to call for the test results.  She hung up on me.  When Bonnie called back, the office admin would not let Bonnie speak to the eye surgeon's nurse. 

I told Bonnie I was driving over to Wilmington to get the test results, one way or the other, and I was leaving in 30 minutes.  Bonnie worked the phones, probably fearing the path I would hew if the stonewalling continued.  Finally Bonnie got a call with the test results.  BAD news.  Bonnie had tested positive for MRSA.  She has a virulent staphylococcus infection.  Good thing it is not fatal.  Oh, right, it can be fatal.  Good thing she is not immune compromised.... oh, never mind. 

Imagine how a hospital can discharge an immune-compromised patient who continued to test positive for MRSA, and then not put MRSA on the discharge notes, nor put Vancomycin on Bonnie's prescription list?  I was lax when Bonnie came home from 110 days in hospitals.  I should have gone through her medical records from the 5 hospitals she was in and looked carefully for negative test results, and prescriptions discontinued, any proceedure or symptom that required follow up. 

Bonnie may need another ten day course of anti-biotic INFUSIONS, before her next MRSA test.  This may entail ten more days of enduring poking with a needle, TWICE a day, to try to find some place where her veins are not impenetrably scarred over from years of daily blood draws and infusions.  And ten days of TWICE a day trips to the local hospital and sitting for 2 - 3 hours twice a day, waiting for the intravenous drip to finish.  They wanted to put Bonnie in the hospital for the infusions, but hospitals are where MRSA is most often acquired.  We have declined that notion.  We shall see what the infectious disease specialist has to say. 

Vancomycin has serious side effects for people with past kidney failures or a history of intestinal problems.  Check and check, but since it is the only drug for MRSA that Bonnie is not allergic to, Vancomycin it will be.  We are having too much fun. 

In the meantime Bonnie's eye surgery next Friday, is canceled.  And no eye surgery is possible until she has two negative tests in a row.  Since her hematologist is out of town, we are told by his office that we have to find a new "primary care physician" to prescribe the antibiotics.  We are given three names, but they will not call the doctors they are referring us to, to help us get in quickly.  It is now Friday, after hours.  Who knows when we will be able to get an appointment with a new doctor and then begin Bonnie's treatment for MRSA. 

Okay, let's roll back a day, to Thursday afternoon and Bonnie's scans.  After the ultra-sound on her thighs, Bonnie went for the MRI scan on her skull and brain. 

Bonnie and I have not talked about what the doctors are looking for in her brain, as it is simply more than we care to deal with now.  On the other hand, we both know that daily headaches for well over a month, are not a good indicator.  We are operating with the understanding that we will deal with whatever it is, when we actually know what it is.  We have come a very long way from the first time we faced a dire diagnosis after Bonnie's blood tests nearly 7 years ago.  We are learning to not waste cycles of attention on what-ifs.   

We arrived for Bonnie's 2PM appointment for her MRI at 2PM on time.  Now we wait and wait.  At 2:30 Bonnie took her prescribed meds to help her stay calm and perfectly still during the 60-90 minute scan.

At 3 PM Bonnie is called in for her scan.  During the scan, apparently Bonnie's attention drifted.  She moved her head slightly, so they had to do a portion of the scan over.  We left at 4:30 PM, exhausted.  Not from physical exertion, but because we will not know the results until Wednesday of next week.  Why wait six days? you might ask.  The scan was complete and can be read by a specialist in less than an hour.  Ah, because only Bonnie's primary doctor can give her the results, face to face.

Correction:  We heard from Bonnie's primary care physician's assistant by telephone Tuesday morning,  28 April (4.75 days after Bonnie's brain scan).  Apparently Bonnie has no tumors or hemorrhages or large rocks in her skull.  There is some small vessel disease that is consistent with her age and her history of treatments.  We will discuss what that means when we meet with the Doctor tomorrow, but for now there is no obvious source of Bonnie's daily headaches on the MRI of her brain.

We talked to Bonnie's primary doctors office last Friday and again on Monday to try to get Bonnie an appointment with an infectious diseases specialist.  Apparently only an infectious disease specialist can prescribe for Bonnie's virulent, drug-resistant Staph infection. 

So far, we have waited 5 days to get a simple prescription for the normal MRSA protocols.  Silly, considering that the last two positive lab tests were done in the NHRMC labs and are sitting in the NHRMC computer; and the infectious disease specialist we are waiting to see, personally prescribed Vancomycin for Bonnie when he was supervising her case at NHRMC in November.  MRSA protocols are simple.  The drug is one she has taken many times before.  Still Bonnie has to wait.  

Waiting is what a patient and family do most.  It is precious time wasted, and needless stress added.  If a customer-facing business like American Airlines or Hertz were to use hospital business practices and information systems, customers would leave in droves and they would go out of business.  

In my spare time, I need to be tested for MRSA, given how contagious it is. The last thing Bonnie needs is a ping-pong infection. 

To raise our spirits, and to get a glass shard out of my foot, we drive to Jennifer's house.  We see three of our four grandchildren.  What a joy.  Luc and Abi jump out from a hiding place to scare me and dare me to chase them.  Squeals of laughter.  Zac greets his GrandBee and then he wants my iPhone to play with.  

Zac has to go off to practice for his baseball league with Scott (daddy), but not before he found and downloaded a Ferrari Racing Game on my iPhone.  Zac is 7.7 years old but he quickly figured out how to use the App Store on a device he has only held in his hands a few times.  He is scary smart, determined and clever around computers, the baseball diamond and school.   

Our 3.5 year old grandson, Lucas, did really well in his first "wee ball" baseball game.  He was the youngest player on his team, by 6 months, but one of the better players at hitting, running and throwing.  He has been his brother's shadow watching and playing baseball for years now.  It was as if Lucas was born for his first baseball game.  Jennifer was both a smart and creative Mom, to get him an exception to start wee ball this year.  Luc took a big step in his transition to "big boy" status this week.

He loved having his big brother and his grandparents and parents all cheering for HIM.  He has been at Zac's games, cheering for his brother for 3 years.   Bonnie thinks Luc has never been happier or more fulfilled.  Luc was so enamored of his baseball PLAYER status, he simply would not take off his baseball uniform t-shirt for two days and one night.

Abigail is now nearly two years old and very funny.  She runs around in glee, a virtual shadow for her brother Luc.  She takes turns with her Luc being held up over my head like an airplane.  She is just now learning to like it.  I can hardly express the joy and comfort I take in Jennifer's home.  It as if the whole world of hurt goes away. 

Abi goes over to take off her GrandBe's socks because she remembers that there is something special about her GrandBe's feet.  After tugging off Bonnie's socks, she goes to her mother, to see if her Mom can take off her toes.  Jennifer shrugs and says, "Nope, I can't take my toes off."  Abi stares at GrandBe's feet in wonder and then at her own feet, her toes showing tiny dabs of coral toenail polish.  Hmmmmm.  Then Abi shrugs.  She is off to play with a balloon.  There is always a balloon in the house.  The kids are in a perpetual game of indoor balloon baseball. 

I got to change Abi's diaper and put her into her PJ's.  What fun.  Now she expresses a color preference as to which PJ's she wears to sleep.  Pink tonight, not yellow.  I put her to bed with her blanket and her dolls and a bear.  She hugs them all up and looks at me steadily with curious eyes.  She is always looking for what is next.  I stay and touch her face and then I ask her to wave to me and say "nite nite".  She does and tonight, like most nights, she makes not a sound after I leave. 

Seeing Bonnie and the grandkids each play with each other makes pushing the medical rock back up the hill day after day, seem worthwhile. 

Jennifer and Scott are wonderful, deeply involved, and yet relaxed parents.  Amazing Grace, these children and grandchildren.  Bonnie adores Jennifer.  Jennifer looks after her Mom in dozens of ways. 

I pray for a kinder world where all children drink clean water, and have the love of parents and grandparents.  I pray that each has food and shelter and joy in their hearts. 

Do you think Buckminster Fuller was right?  There are enough resources on earth to enable such a world, if we only take proper aim and then do what is needed to bring forth such a world. 

/Daniel for BanD

Hope. The season of coming out of the darkness.

It has been about 70 days since I posted on Bonnie’s Recovery Weblog. 

Several times I was moved to write, but whenever it seemed that we had just turned a corner, another medical emergency would arise:  a 102 fever, loose stitches in Bonnie’s transplanted cornea, multiple bladder infections, pain and a gangrene odor coming from the damaged tip of Bonnie’s middle finger, and two weeks of headaches for Bonnie every morning.  Between the emergency visits to doctors of every stripe, and Bonnie's regular blood draws, infusions, and appointments to arrange Bonnie’s cataract surgery, each time putting the steel wheelchair into the car and taking it out, I found myself in the “myth of Sisyphus”.  I have been outwardly silent. 

A recent dream captures what is up.  Bonnie has fallen overboard from the small wind-powered boat we were in.  I hang on to a lifeline connected to Bonnie.  The line is paying out very quickly and the angle of the line approaches the horizon.  The line is hope it’s self and I dare not let go.  I look at the line cutting deeply into my right hand and forearm.  I gradually experience pain.  I look to the horizon where Bonnie must be, under the water.  My arm convulses and my whole body trembles with the exertion and a quickening of the pain.  The light drains from my eyes, I go into blackness and I black out.   

In real life, my iPhone rings and rings.  I struggle to come out of the blackness.  But I do not get to my iPhone before it rolls to Voicemail.  It was Ken Ireland, the ex-Jesuit priest who helped Bonnie through the Saint Ignatius exercises 6.5 years ago.  He was "just calling to find out how I am" at the moment I lost consciousness in my dream.  

It is remarkable that this dream of dissolving in blackness is the polar opposite to my dream of white light in November 2005.  In August or September of 2005 Bonnie's Leukemia had returned.  From October 2005 to March 2006 Bonnie's white blood count and her immune system declined toward zero.  But we had to wait until Dana Farber Cancer Institute found a bone marrow donor match for Bonnie to restart her Chemotherapy.  Since no donor had been found in the national or international donor databases, our chances in late 2005 and 2006 were, slim and none. 

But for some reason Bonnie’s October 2008 fall and her sailing out to the edge of life again was more fundamentally disturbing than our previous episodes with AML, extreme doses of Chemotherapy, the Bone Marrow Transplant, 200 days of reverse quarantine, acute and chronic Graft vs. Host Disease and Bonnie's 3 prior courses of physical rehabilitation.  This time, when Bonnie cracked her skull and her heart stopped, she had moved so close to the edge of Life.  Every doctor who was attending to her said she was very unlikely to make it back. 

In the past, when Bonnie was very ill we could speak with one another every day.  Even routine conversation with Bonnie can be like a jazz riff.  Good conversation with Bonnie can sail from Thelonious Monk to Bill Evans and back to Donald Byrd, in just a few turns.  But October 18th marked the first time 22 years that we were not able to converse with each other for many weeks on end.  It was a such a strange vigil trying to keep Bonnie alive against a backdrop of seemingly unending complications and errors, with Bonnie not able to speak for herself. 

Having gone through this together, we have a deeper appreciation of the other and those of our family and friends who have shown up caring for us.  I did not intend to reveal such darkness with this post.  Clearly there has been love, light, laughter and a sense of being blessed amidst the challenges over the past 6 months.  (** See postscript below **)

On Wednesday, Bonnie and I went to my first Christian observance of Tenebrae (Latin for “shadows” or “darkness”.  The Tenebrae service was like my first Grateful Dead concert.  I did not know what to expect, it kept changing, and at it's peak, it was overwhelming.

The church was lit by 15 candles on the front alter.  A couple of members of the church slowly read Mark’s account of the Last Supper and Jesus’ capture by the Romans, and his crucifixion, accompanied by a gradual extinguishing of candles, until the whole church was in darkness and the congregation filed out in the silence. 

On our way home I thought, whatever else Jesus was, he has represented abiding Love and Hope to so many, for centuries on end.  I was reminded of Bonnie's mother being wheeled in for her second cancer surgery and pleading to Bonnie "I do not want to die." as if Bonnie somehow had the power to grant her this ferverent wish.  People who have loved Bonnie, like her Mother and I, her son and daughter and people with whom she has worked, often experience Bonnie as a kind of hope; the hope and love that comes when one is in the presence of a good “den mother”. 

I am coming to understand another aspect of the woman I married and both the joy and despair I have been experiencing since October 18th. 

We have a tentative appointment with an eye surgeon on May 1 to remove the cataract in Bonnie's "good" eye and to replace it with an artificial lens.  Bonnie may be able to read again by the middle of May. 

Hope is returning.  Thats the news from Oak Island, where every sunset is beautful  and all the fish are keepers. 

/Daniel for BanD

** Postscript -

For care providers who may read this at some later moment.  Be clear with yourself:  The path of an advocate, and especially a care giver can be very very long, and arduous, and heart rending.  At the end of the day, you too may find that this is the deepest, most-touching, real work you have ever undertaken. 

Also be clear, you WILL need rest and re-creation time to recover your natural sense of humor and being in the world.  Studies show that a patient needs 3 days to recover their mobility and strength for every 1 day they were in a hospital bed.  Likewise a caregiver in a chronic / critical care situation needs 1 to 2 days of sleep, reading, massage and some form of one's favorite re-creation, for every 1 day the caregiver was in the line of fire.  Based on your age and the length of your "tour of duty", your mileage may vary.  

Be forewarned, if you imagine that this kind of work is like manual labor or a desk job, you may find yourself surprised by how fatigued, annoyed or short-tempered you have become. There are studies that show that Long Term Care Givers for Bone Marrow Transplant survivors (and Alzheimer's patients) fall into worse health than the people they are caring for. 

The symptoms to watch for are: fatigue, a loss of your sense of humor and above all the loss of a sense of joy. 

/D

Daniel in Chicago; Bonnie at Jen's

This is just a quick post to let you know we are OK.  Margery, Daniel's mom, has moved to another apartment at the Classic Hyatt where she has lived for more than six years.  Daniel went to see his Mommy and help her with any move in stuff she wants. 

I'm staying at Jen and Scott's and having lots of fun with our three grandchildrrn.

Daniel plans to return on Tuesday night. 

Bonnie for BanD

Chocolates and children: hooray

Another long delay in posting; sorry about that.  That bladder infection I wrote about in my last post hung on and on, and the continuing fever though low, wiped me out.  I seem to be over it now.  I was tested yesterday and don’t have results yet.  My sight continues to worsen making typing difficult.  The most annoying part is that cataracts make one very sensitive to light.  The direct light from the compute screen is painful, especially at night.  I’m putting in less and less computer time.  I finally got those shoes this past Monday.  I am able to walk slowly in them; I think they’ll be ok.

  If you have read the comments on the mystery of the chocolates, you know that Mary (Wetzel) sent them.  I had an intuition they were from her.  Daniel, a whole crew from EDS, and I went to Mary’s ordination in GA just the week before my incident.  I cling to the memory of those days.  Here is a joyous picture of us celebrating the ordination.  Mary is the smiling face behind Emmy in the black robe.

The chocolates were very Mary in spirit.  Some days in Cambridge I would just get “stuck” – physically (unable to get out of a chair), or emotionally, or spiritually.  And at just that moment, Mary would show up at our door bringing relief of all kinds.  I have so many friends who are beautifully spiritual.  My EDS friends are especially devoted to God’s mission.  Yet, as I watch her, Mary is the one to walks closest with Christ. She personifies mercy as I understand it.  I mentioned that I thought the person who sent the chocolates was not well versed in Lent. For those of you who are cradle Episcopalians over 50, you know what that means: the “giving up” of something, usually food, for unclear reasons.  A childish game.  Mary was raised in a Southern evangelical tradition.  No Lenten games.  Unlike us brat Episcopalians, she read the Bible.  Wow, in seminary you can really tell who was raised in a Bible church.  They know the Bible as us Episcopalians rarely do.  Mary lives the spirit of the Bible in the best way I know. Our church is fortunate that she became Episcopal.  Thank you, Mary.

Don’t think Daniel and I are too out of it.  I have a whole, miraculous, POD unpacking story I will save for another post.  We are mostly up and about. 

 

                       Abi putting on headset in car.                          

 

Last Sunday after church we went to Wilmington and took care of the three grand children until midnight Tuesday.  Jen and Scott had gone to Las Vegas for a five day vacation sans kiddos.  We got great help.  Jen’s father and step mother kept them the first three days.  Sally made a huge lasagna; it felt like it weighed 15 pounds!  It was great dinner for two nights.  They stayed near Wilmington in case we needed help.  Jen’s neighbors Beth and Warren came over two evenings to help out, putting Abi to bed, etc.  We had such a great time.  The children are amazing.  Zachary is a big help with the littler ones.  Luc is becoming quite imaginative, making up and playing out his own stories.  Abi is the smarty.  When she poops, she tells you and brings a clean diaper.  I would say to her, go get a diaper and she would toddle upstairs on all fours and bring one to me, then crawl up on the sofa and put up her legs.  So cute. Daniel brought me home at midnight after Scott and Jen came home.  We got to sleep in our own bed and wake up to the sunrise over the ocean.  We are having a rest catch up day. 

Life is good,

Bonnie for BanD

Mysteries

A good mystery and a bad one. 

We received a box of chocolates from L.A. Burdick.  For those of you who don’t know. Burdick is a fantastic chocolate company.  The best way to warm up on a cold Boston day is to stop by their shoppe near Harvard Sq (on the way to our EDS apt).  One of you sent this with no name.  The card was cute with instructions that the chocolate would be a good Lenten treat to fight fatigue.   It certainly has been good for that.    I do sort of like these “who sent it” mysteries.  I’ve narrowed the options to some who has lived in Cambridge, but added to that list a few other people I know who know Burdick.  The second clue is the reference to Lent.  The person(s) who sent the chocolate are comfortable with mentioning Lent, but I believe it may not be his/her practice. Among Americans chocolate is the #1 food people “give up for lent.”  I considered it this year and decided not to do that.  How foresightful of me! 

 So fess up.  Who sent this great chocolate mystery?

 My second mystery is neither tasty nor great.  I got quite a mysterious infection this weekend.  Sunday my temp was lingering around 102.  I did not want to go to the emergency room; I’ve never gone to emergency and not been hospitalized.  I had Cipro the doc had prescribed for when I have a fever.  I took it all of Sunday and today.  By tonight my fever was completely gone.  It is amazing how much better I feel.  I’m so accustomed to being tired that I don’t pay enough attention to when I am really ill.  Friday morning I was energetic and had a good physical therapy session; by the afternoon I could barely stay out of bed.  On Saturday I told jen we wouldn’t come to their house as we had planned.  I should have been taking my temp;   Instead, I assumed it was just my usual fatigue; my temp got to 101+ before I finally started measuring it. 

I go to the doc tomorrow; I was too ill this morning to go.  Maybe they will still be able to solve the mystery of what kind of infection it was.  I’m happy not to have another expensive hospitalization.  I now wonder if I could have stopped the near fatal one last October.

While we are in Wilmington tomorrow we’ll pick up my new size 6 shoes with the custom insole and fake toes.  I’ve started to practice with a cane instead of a walker.  The shoes may provide a bit more stability.

And of course while we are there we will see the grandchildren.  With their illnesses then mine, it has been far too long.

 Love to you.

Bonnie for BanD

 

 

Of death and taxes

Who was it that said there are only two sure things in this world?

 

On Friday of last week, I turned my concentration from one to the other.  This year’s ready to get ready to do tax returns was an extra long effort since I had done none of the year’s categorizing in Quicken.  It was a good opportunity to be more systematic than I usually am and to figure out the categories that are most useful.  With two rental properties, there was a lot to figure out as well as just the labor of putting in categories.  I’ve now finished rental stuff that goes to Ron and Jennifer who co-own properties.  Next week I’ll turn to the rest of our taxes and also analyzing where our money goes (like 17k in medical after our extensive medical insurance). oh well.  I intend to write sometime about our country’s ‘medical insurance crisis as we see it.

 

Tonight I finally read your wonderful comments on my Ash Wed posting.  Thank you.  I love having good friends who are priests.  I think about what you are doing frequently, especially on Sunday. Thank you for you images of how you spent Ash Wed.

 

Thanks for the frank interchange about life support.  I have a DNR that says no heroic means.  I wonder if the grand-scale prayer I get is a kind of heroic means.  It doesn’t have the vegetable connotation of medical means.  This may sound inconsistent, but we have subscribed to a medic alert system for which I wear a call bracelet.  Why call someone if you have a DNR?

 

One reason is that the company can provide my med record stuff like allergies and also provide a copy of the DNR wherever I am.  Daniel worries when he leaves me alone for even a short while.  I think my cell phone SHOULD be enough, but I’ve yet to figure out how to keep it with me all the time.  Unfortunately the call bracelet is only for the house because it relies on dialing the phone to connection an emergency assist person.   Seems to me that a cell phone app would do better, but there doesn’t seem to be such a service.  At $18 a month, this service is not a big decision during my tine of very limited ability.

 

Speaking of ability, I am doing better all the time.  I still like my wheelchair too much.  It is too tempting to roll around the house whenever I need to move, but using it, I don’t get so completely tired.  My leg muscles get stronger all the time.  I imagine a day, and soon, when I will simply forget to use the wheelchair.  The doc will unstitch my left eye on Friday and I’ll start to wear my contacts again.  I get a gamagobulin infusion again on Monday.  Good for my immune system.

 

Life at the beach is beautiful, though still cold for NC.

 

Love and the peace of God to you.

 

Bonnie for BanD       

Ash Wednesday 2009

Those of you who have been following this blog a long time know that Ash Wednesday is a significant religious day for me.  I wrote about my history with Ash Wednesday and considered why it means so much to me on March 1, 2006, six months before the bone marrow transplant.  You can read that and see pictures of Bonnie-2006 at this link. 

http://stillthinking.typepad.com/bonnie_recovery/2006/03/he_remembers_th.html

 Today Daniel and I will go to St. Philips for Eucharist and the “imposition” of ashes- that little smudgy mark you’ll see on some people’s foreheads.  . . . 

 We have just returned from church where I hear there was a record turnout for the third service today.  Could it be that Ash Wednesday is getting more popular? In these dark and uncertain times it may be that we “need a little Lent” in the way we often “need a little Christmas,” to borrow a line from the lyrics of Broadway’s Auntie Mame.

It is now early Thursday morning, and I continue to complete Ash Wednesday.  One of the benefits of keeping a blog is that I we can revisit the history we recorded there.  Looking back on the meaning of Holy Days in the past illuminates my current experiences.  I know that I have grown in appreciation of Ash Wednesday as I have encountered my own death and that of loved ones with the lessons of this day.

 The Episcopal ritual for Ash Wednesday has the priest say these words to each person as she/he paints (imposes) a cross with ashes on the forehead:

“Remember that you are dust, and to dust you shall return.”

 I remember Ash Wednesday of 2002 when I was visiting General Theological Seminary in New York City, only blocks from the site of the World Trade Center.  It seemed to me that ashes were still hanging in the air after six months.  What could be a more poignant reminder of  “to dust you shall return” than those ash pits where people and buildings once stood thinking of anything but their mortality.

 “REMEMBER” first became a significant word for me in the prayers of that day.  Yes, remember the horrible thing that was done to us as a country, but also remember that we ARE dust.  That understanding gave me peace and guidance when I was diagnosed with a fatal disease five months later.  I felt that God was already preparing me; she was already comforting me and REMINDING me that I am already dust and that I should not fear that to dust I will return.

 Ash Wednesday, 2009 has grown even more in significance for me. The events of this fall were a surprise to me in so many ways.  In the first week of October, I was thoroughly confident that I was on my way to a normal life.  Yet by the 19^th Father Barry Kubler was called to the hospital to administer last rites.  Recalling those first days after my incident, my son talks of how differently the doctors spoke with him this time.  In California when I was very ill with kidney and heart failure, the doctors talked vaguely, warning about how sick I was.  This time they were direct, I was certainly dying and he should prepare himself for that.  Though confronting my immanent death, none of my family or friends would let me go, and so here I sit in front of my computer writing the story.  Yet these events have brought home to me, and maybe to you in a new and powerful way, “Remember that you are dust.”

 I don’t have to look farther than the middle finger on my left hand to see that I am dust.  We have decided not to amputate the tip of that finger, but to see how much of it will remain when the dead part falls off.  Recall that this finger and all my toes were killed when the so-called “pressor drugs” reduced blood flow to my extremities in order to put more into my brain and heart.  My left hand has what looks much like a hard black thimble on the middle finger.  It is a bit painful as fresh skin tries to grow under this tight containment.  I find myself fascinated by it however.  It is this part of me that died last October and yet it is still part of my body. Such are the thoughts of Ash Wednesday, and remembering that I am dust and to dust I AM RETURNING.

 I’ve given a couple of sermons about living with dying and the miraculous transformation that can bring to life.  This link takes you to another March 1, 2006 posting:

http://stillthinking.typepad.com/bonnie_recovery/2006/03/index.html

 The link will take you to March 31 and you will need to scroll down to March 1.  In the March postings you scroll through, you’ll find a picture of a stem cell ready for transplant and also the announcement of the first confirmation that we had a donor.  The March 1 post is called “Gratefully Dead –Sermons.”

 Ash Wednesday is more than a day in which we remember our mortality; it is also the beginning of a time for setting aside normal concerns and being more focused on your relation with the Divine.  The Episcopal liturgy puts the invitation this way.  I invite you with its words:

Dear People of God:

 I invite you, in the name of the Church, to the

observance of a holy Lent, by self‑examination and repentance;

by prayer, fasting, and self‑denial; and by reading and

meditating on God’s holy Word. And, to make a right beginning

of repentance, and as a mark of our mortal nature.

 

Thank you for your continuing love and support,

Bonnie for BanD

 

 

 

 

 

Prayers from St. Louis

Ah, back to the blog.  When I was in New Hanover rehab, I had no access to blog sites. I could use most any other kind of site, bit nothing it recognized as a blog  Daniel has been doing such a great job of documenting what’s up with us, I haven’t been moved moved enough to post.  I’ve been so tired this last week, I haven’t even turned on the computer.  My vision is so bad that reading and writing are difficult.  We are setting up my 23” monitor so that I’ll have big type and be able to communicate easier.

Yesterday was my two week anniversary at home.  The first week went really well with my son Ron and his woman friend Hadley visiting from CA, and Jen and family joining us the following day.  Daniel shopped and cooked for 18 hours to prepare an amazing steak dinner.  Much more could be said about this joyous time, but that will have to wait. I’d like to catch up on the many experiences I’ve had since my birthday. 

A few days after my birthday Daniel arrived at New Hanover with a lapful of mail, mostly birthday cards.  I had beautiful cards from friends like Beanie and Rosemary.  Then I started to find cards from, St. Louis and Sab Antonio, not one or two, but dozens and dozens.  With Daniel's help, we figured out that my stem cell donor, Jay, and his mother Vandy had told their friends about me and they had responded by sending birthday cards to a woman they had never met.  I truly felt like a member of Jay’s family.

    

[Here are (1) a picture of Bonnie with Jay and Vandy and (2) the 51 cards laid out on my hospital bed at New Hanover]

More than that, I was overwhelmed by the love and prayers from people who love God and love me because I am a child of God and also a miracle by the intervention of Jay.

Dick Shoup, whom we worked with at Interval, introduced us to research on “remote prayer.”  In some experiments, one group of patients was prayed for by people they didn’t know.  A matched sample was not prayed for.  The health outcomes of those prayed for were better, even though those patients didn’t even know they were being prayed for.  I feel like one of those prayed for patients.

Reading all those cards brought me close to those who wrote them as well as to the God we all adore.  The card scme in all kinds of styles.  Many were funny.  Some were classically religious.  Others had a tone of modern spirituality.  I enjoyed imaging the individuals who chose each card.  Many of them were packed with prayer goodies such as little books of prayer that fit easly in my purse.  Two people sponsored monastic organization prayer for me.   A woman in San Antonio sent a picture of a retreat that I believe was attended by many of the card senders.  

I have been inspired by this outpouring of love in addition to the continuous care that you, my long time friends, continue to show Daniel and me.  When I ask myself why this third round of disabling illness, one anwer that come to me is the connection to these people who recently entered into my life and also to two dear family menbers I thought were lost to me.

Jay works with a group of prisoners in his area.  He told them about his experiences as a bone marrow donor.  I have tried to explain the process, both medically and spiritually, but have not come close to his elloquent description.    Here it is:

Bonnie --

. . .  The men on our REC weekend now know all about you, on account the following excerpt from a talk I gave about Christian Living, this past Sunday. I think all the facts are correct, but even if they're not all in quite the right order, they did serve to give powerful witness to many people.

Here's to better times ahead!

Peace & All Good Things,

Jay

... Most people who know me know I'd rather spend time alone than being present to other people. Most human interaction makes me very tired, and I tend to resent it when too many people need me to spend too much time with them.

Yet, what do I lose when I keep to myself too much? So many chances to meet people like you, and my friends on this REC team. And people like my good friend Bonnie.

Seven years ago, I signed up for the National Bone-Marrow Registry. They took a sample of my blood and through the wonders of science were able to break it down into the individual parts that make it uniquely mine. They stored all that information in a massive computer in case someone with DNA similar to mine needs a bone marrow transplant to treat a blood or immunity disorder.

I got a call in May of 2006 asking for additional blood samples. A woman with leukemia, a deadly disease that is like cancer of the blood, needed stem cells from my bone-marrow. .

Because the same kind of leukemia had killed my dad at age 42, I was excited to be able to help.

So, I got to spend two consecutive afternoons a hospital that August, hooked up to a machine that ran all the blood in my body through the spin cycle, drawing out the cells the woman would need for the transplant. Then I went about my business. I prayed for Bonnie, even though I didn't know who she was.

Well over a year later, I learned her identity, and that God had worked His healing in her through amazing medical science. As it turns out, the doctors had not given her much chance of surviving. They're still trying to figure out how my "vigorous" blood cells got rid of the leukemia in her bones and blood.

When she learned my name and address, Bonnie sent me a note thanking me for helping her be around to meet her new grandchild.

We finally got to meet each other in St. Louis last summer, and we forged a spiritual bond that death itself will not be able to break.

Since her diagnosis, Bonnie left her high-powered job in Silicone Valley and entered an Episcopalian seminary in Boston, so she could become a minister and give spiritual direction. She received her divinity degree and preaching credentials last May.

But since then, there have been complications, and she has suffered immensely. Her Christian walk with suffering has been a sermon more powerful than anything she could preach from a pulpit -- "DON'T DWELL ON THE PAIN. DO NOT GIVE UP. STAY VISIBLY JOYFUL, NO MATTER WHAT. FOCUS ON THE NEEDS OF OTHER PEOPLE. PRAY FOR THEM. PRAY WITH THEM. BE GRATEFUL. BE AWARE THAT GOD IS WORKING IN YOU, THROUGH YOU, WHETHER YOU SEE IT OR NOT. STAY PRESENT IN THE PRESENT. DO NOT BE AFRAID TO DIE. BUT KEEP PLANNING FOR THE FUTURE."

I believe I’m a better Christian for knowing Bonnie and her husband Daniel. No gift of time or stem cells could make up for the awareness they have helped to create in me that time is fleeting, that the pleasures of this world are subject to change without notice, that being totally present to people is truly an act of Godliness.

May God continue to show me His way to Christian Living, through people like them. ...

Because the same kind of leukemia had killed my dad at age 42, I was excited to be able to help.

So, I got to spend two consecutive afternoons a hospital that August, hooked up to a machine that ran all the blood in my body through the spin cycle, drawing out the cells the woman would need for the transplant. Then I went about my business. I prayed for Bonnie, even though I didn't know who she was.

Well over a year later, I learned her identity, and that God had worked His healing in her through amazing medical science. As it turns out, the doctors had not given her much chance of surviving. They're still trying to figure out how my "vigorous" blood cells got rid of the leukemia in her bones and blood.

When she learned my name and address, Bonnie sent me a note thanking me for helping her be around to meet her new grandchild.

We finally got to meet each other in St. Louis last summer, and we forged a spiritual bond that death itself will not be able to break.

Since her diagnosis, Bonnie left her high-powered job in Silicone Valley and entered an Episcopalian seminary in Boston, so she could become a minister and give spiritual direction. She received her divinity degree and preaching credentials last May.

But since then, there have been complications, and she has suffered immensely. Her Christian walk with suffering has been a sermon more powerful than anything she could preach from a pulpit -- "DON'T DWELL ON THE PAIN. DO NOT GIVE UP. STAY VISIBLY JOYFUL, NO MATTER WHAT. FOCUS ON THE NEEDS OF OTHER PEOPLE. PRAY FOR THEM. PRAY WITH THEM. BE GRATEFUL. BE AWARE THAT GOD IS WORKING IN YOU, THROUGH YOU, WHETHER YOU SEE IT OR NOT. STAY PRESENT IN THE PRESENT. DO NOT BE AFRAID TO DIE. BUT KEEP PLANNING FOR THE FUTURE."

I believe I’m a better Christian for knowing Bonnie and her husband Daniel. No gift of time or stem cells could make up for the awareness they have helped to create in me that time is fleeting, that the pleasures of this world are subject to change without notice, that being totally present to people is truly an act of Godliness.

May God continue to show me His way to Christian Living, through people like them. ...

Thank you, Jay, for the beautiful words and for sharing your friends as well as your DBA with us.

 

A very tired Bonnie for BanD

 

. 

What to do?

I've been planning several posts for a LONG time.  But as you can tell from Daniel's posts, I have been busy.  Now what I call "busy" is not what you might call that.  For example it takes an hour for me to take a 15 min shower.  Everything is effortful and takes longer than I think it should.  This weekend, I'm definitely planning to write what is up for me.  I am being grateful that I can lift myself and can roll over in bed.  Do you know how annoying it is when you can't roll over in bed?

Help.  Tuesday is Daniel's birthday. 61.  I want to do something special, but can't think of what.  Do you have any ideas?  Oprah had a woman on her show who gave her husband sex everyday for a year. to celebrate his 40th  I don't think I will do that this year.   I need to order from Amazon tomorrow to get anything here by Tuesday.  Let me know privately by email or publically on the blog.

Bonnie for Band

Doctors and more doctors - Bonnie is doing better.

I will flesh this report out later.  I am exhausted. 

We saw Bonnie's Bone Marrow Specialist, Dr. Chao at Duke in Durham NC yesterday and he is taking Bonnie down on both of her anti-immune drugs and found some vitamin and mineral deficiencies and confirmed a bladder infection all of which, when remedied, help Bonnie feel better.

We saw her eye doctor today and her left eye with the transplanted cornea that was dented and thinning is regaining it's epithelial cell coverage.  She may have her eye unsewn shut in a month.  We hope she will be healthy enough to have her lens and cornea transplanted in August in Boston, so she regains some sight in her left eye. 

Her right eye is in much better shape than a year ago.  She has some new prescriptions for just her right eye and she should be able to see better than she has in a year or two from her right eye.

Bonnie has her Physical Therapist coming tomorrow so she will be working out again, and regaining more strength.

The sunset was beautiful tonight. 

She is my joy in life.

Daniel for BanD

Day 106 - Bonnie loved her visit with her kids and Grandkids Thurs - Sat

Bonnie is adjusting to home life quite well.  She wheeled herself around the house for about hour, stopping here and there, getting used to being at home. After 105 days in 14 different units in 5 different hospitals, just being out institutions and riding in a car, much less being in her own home, was a novel experience.  Bonnie says she had almost forgotten her life before her life as a patient. 

Bonnie was thrilled to see her son Ron and his dear friend Hadley arrive.  Bonnie was chopping vegetables at a clever Levenger solid-cherry laptop table that rolls goes over the arms of her wheelchair. 

Within half an hour of Ron and Hadley's arrival, the sun was setting over the ocean, a rosy orange streaked with wispy white and dark clouds.   True to form, Bonnie declared it to be "a champagne emergency".  Ron popped the cork on Bonnie's favorite Domaine Chandon Blanc de Noir and we toasted the sunset and each other.  I love this champagne because it's is so close to Bonnie's skin in color.  

Hadley is a chef and has wonderful taste in wine, food and kitchen equipment.  I had fun showing her a few pieces of our beloved Rosle kitchen utensils.  She had particular fun opening the cans of diced tomatoes using the Rosle can opener.  The cutting wheel of this opener runs smoothly along the can rim with-out contact to the contents.  Cutting along the side permits easy lifting of the top for re-use as a lid.  The cut tin edge is blunt and smooth.  Ah, German engineering. 

Bonnie was pedaling her wheelchair smoothly around the kitchen, putting the broth and spices into the two 6 quart pots.   When the broth was simmering hot, we added the shellfish and then the fish so it would all remain tender.   We used our All Clad Stock pot / steamer to boil the water for the round cheese and spinich ravioli AND placed a steamer on top to steam the snow peas and asparagus.  Hadley made the salad dressing and salad of mixed baby greens in our huge Arbutus wooden bowl.  She added small on-the-vine tomatoes and Parmigiano-Reggiano cheese.  The salad was so colorful. 

We had two wonderful white wines, one a La Crema Chardonnay.  I call Bonnie "La Crema" every morning when I bring her a cappuccino.  But the white wine Hadley and Ron brought was the best.  Round, smoky, and full of different flavors.  Dinner was tasty, fun and funny.  Some of us ate the asparagus as a seal eats a fish.

Bonnie's Bouillabaisse was the hit of the dinner.  It was truly wonderful. 

Finally at about 10 PM Bonnie and I retired and Hadley and Ron finished cleaning up the kitchen.

We love them:  Really fun people to be around.  I will ask Bonnie to write about the following afternoon and dinner with her NC grandchildren and children, Ron and Jennifer, and her husband Scott. 

Now I have my Bonnie in my bed.  There are no words to fully capture the sweep of emotions and sensations.  

I can only say that as we lie in bed, with her head on my shoulder and her leg thrown across mine;  with my hand in her hair, we find the sensations both strange and familiar by turns.  It is secure and warm, we sink into the comfort of each others bodies.  And there are flashes of fear. 

Bonnie has prayed and discerned that it was time to put her Do Not Resuscitate orders back in place.  She explains that she is fully onboard to go for recovery one more time, but that she does not have it in her to be brought back from the process of dying another time.  So we are going for a full life, but there is no more safety net of resuscitation in place.   It reminds me of the sense of being up against life and reality while "free climbing" in Yosemite, without a rope when I was young. 

It is interesting to experience how much this calls us to enjoy life hour by hour.  We are loving each others company.  Bonnie is asleep by my side. 

Good night sweet friends.  Thank you for your prayers and kind thoughts and words.  We have been uplifted, once again. 

/Daniel for BanD

Bonnie is home, and preparing the Bouillabaisse for dinner.

Bonnie is home.  The Stair-lift gets installed tomorrow at 11AM.  No problem.

Jim and I bumped Bonnie up the stairs with her belted in her wheelchair, tilted back and riding up backward.  

Bonnie was touched to be home and to see the amazing loving work Jim and Ruth did over the past four days to make the house glow with clean warmth.  She said it feels unreal to be home. 

But there is dinner for her son to prepare.  So Bonnie wheeled herself to the breakfast bar, and sat at the kitchen counter chopping onions and peppers for the Bouillabaisse.  We just bought 1lb. of wild sea scallops from Maine, 1lb. of clams from Maine, 1lb of pre-cooked shrimp with the tails on, from the Gulf, 2lbs of Atlantic Cod and 4 lobster claws from Maine. 

We shall see how good Bonnie's cooking is tonight.  Oh, Bonnie correctly recalled that we had exactly 4 cans of diced tomatoes on the bottom shelf of the pantry.  Pretty good for a person who cracked her skull on Oct 18th.

Bonnie just wheeled herself into the bedroom and I have my honey here in bed with me. 

Let's see I can continue writing in the Weblog or I can .....

Bye.

/Daniel for BanD

Day 103 - It is B Day !! In 5.5 hours I go and pick Bonnie and bring her HOME!!

Yesterday was Wednesday.  The last day of preparations before B-Day. 

It was a "point 5" day = .5

As in "we are so close, but not yet whole"

Yesterday I awakened after 3.5 hours of sleep to receive the Building Inspector.  Steve came just as I was grinding the espresso beans.  Okay no espresso at 8:45.  Steve passes our new stairs and deck but requests that we raise the hand rail from 32.5" to 35.5".   What we call a "hand rail", he declares to be a "guard rail" - thus a different code - calling for a different height.  Close, but not quite.  No problem.  The carpenter will fix it Friday. 

Yesterday, the Stair-Lift was in Cleveland, but the snow storms mean that it will not make it to Oak Island in time to install for Bonnie's homecoming.  Close, but not quite. No problem, we will install the Stair-lift when it comes. 

By phone Bonnie says she is not concerned about the delays on the Stair-lift.   She suggests that I can stand behind her as she walk ups the 15 steps.  She declares that she can make it all the way to the top, if I just give her butt a little push.  NOTHING is going to keep her from being home to see her son, Ron tonight, and Jennifer, Scott and the NC grandkids Friday night. 

On Tuesday, Jim and Ruth came and we fixed and cleaned up most of the remaining items.  On Wednesday they could only stay until 12:30 PM.  So we raced to try and finish every thing.  I still was not able finish preparing a double shot of espresso.  By noon we had almost finished all cleaning and fixing, but not quite.  No problem, they are coming back this morning and will complete the punch list to make the house ready for Bonnie's homecoming.

I am back to finish steaming the milk, but before I can pull two shots of espresso, Bonnie's wheelchair and walker was delivered.  No problem.  At noon, I was finally able to make two shots of espresso and a bowl of oatmeal.  Then I drove over to Coastal Rehabilitation with Bonnie's wheelchair and walker to get them perfectly adjusted to Bonnie. 

I arrive to Coastal Rehab .5 of an hour late.  I am there to observe and/or help Bonnie practice all of her new tricks.  She stands up by doing the "nose over toes" trick she learned last year during her 9 weeks at Youville Rehabilitation Hospital.  Then Bonnie easily sits back down using her walker as parallel bars.  She does all of this easily, with quiet pride.  Wow.  I am impressed.  Then Bonnie pulls back the sleeve of her shirt, and displays her biceps, in a mock linebacker pose.  Hey Bonnie has developed a real bicep bump.

She walks over to the practice stair case, using her walker.  Bonnie is able to mount and walk up one stair!  Wow.  Amazing.  But not enough to cope with the lack of a Stair-lift for her Thursday homecoming.  No pushing her butt up 15 stairs. 

No problem.  Jeff, her Physical Therapist says we can strap Bonnie into her wheel chair with her seat belt, and bump her up the stairs backwards.   We use the gym's practice staircase to learn how to do this safely.  We tip Bonnie back, and pull her up, bump, bump, bump, up one stair at a time.  Like they say in Jamaica mon, No problem.

We practice having Bonnie get out of her wheelchair, and grabbing her walker and walking up to the passenger seat of the Honda Odyssey.  She is able to turn around and position herself to get in passenger seat, easily.  She smiles.  We have visions of Road Trips!  Bonnie is able to get out of the car using the grab bar above the door frame and using her walker as parallel bars. 

I think this is THE trick she had to show that she could do to be cleared to come home on Thursday.

We retire to Bonnie's room and enjoy each others company.  Finally at 6 PM I go over her third draft of a 1.5 page grocery list.  No problem I go to Costco.  It takes 1.5 hours to renew our membership and walk up and down the each row, like a treasure hunt, to get each item on Bonnie's list.  It was only 4.5 hundred dollars to get most of the things on her list. 

But I have .5 of a page of items I can not buy at Costco, like fresh bay leaves, fresh Italian Parsley, Pelagrino, Tofu etc.  It is 8.5 PM.  No Problem.  I drive across the bridge to a new upscale supermarket. 

It is joke trying to find Tofu in North Carolina, even in a yuppie supermarket that features Organic produce and fresh wild scallops from Maine.  As I go around the refrigerated perimeter of the supermarket, looking for firm Tofu, I notice that I can get Pork Loin Ribs, Baby Back Ribs, 9 kinds of Ham, 15 kinds of bacon, many local and national brands of Pork Sausage and Patties, Pork Shoulder (blade in, nor bladeless) and Pigs Feet (pickled or fresh). 

When I ask for Tofu, I go where I am directed.  I find Garden Burgers.  That is the state of Tofu and Hogs in Eastern North Carolina. 

I drive home in a total of 1.5 hours.  I haul 11 loads of groceries up the stairs and to put them away.  It takes about 1.5 hours to get everything into our huge side-by-side refrigerator.  

It is now 6.5 AM on Thursday morning.  I have to get awaken in 2.5 hours to let Jim and Ruth in.  I have to pick Bonnie up at about noon, an hour away.

This morning Jim and Ruth will spend .5 of a day to re-wash the tile floor in the kitchen.  Do a final application of Bruce wood wax to the plank floors, tables and chairs.  Pack all of the "jelly-jar style glasses" into strong box, to await this summers rental season and put the new Lenox water and juice glasses into cabinet.  Ruth will do a final Clorox cleaning of the counters and stove and tile floor.  Jim will finally will put the huge box from Pioneer HDTV that I have been bumping into for 120 days, into storage room under the house.  What a joy to have our most of our house livable again.  We started this "move-in" process the last week of August.  5 months is too long to live amid boxes. 

Jim will power wash the windows and the siding of the house.  

I will unpack the back of the Honda and take two huge, empty suitcases to the Hospital to pack up all of Bonnie's electronics, clothes, books and medicines.  Is this a lot of work?  No problem.  Especially compared to the level of effort and Bonnie's commitment to be ready to come home two weeks earlier than recently planned. 

Now, why did Bonnie re-double her effort to come home today.  Bonnie's son, Ron, had a pre-arranged flight to come to see her, and Bonnie wanted to be a host for him, AT HOME. 

Bonnie is coming home with THREE 1 Gallon Ziplock Bags to hold all of the medications she is either currently on, or has recently been taking.   Is this a lot of worry?  No Problem.  Bonnie is likely to be coming off of many of these drugs over the next two weeks and off of even more in the next two months

It is B-Day.  Bonnie is coming home.

/Daniel for BanD.

Day 101 - Bonnie is scheduled to come home on Thursday. Two days til B Day.

Bonnie is hard to reach during the day because she is spending more and more time in the gym. 

Bonnie was able to do 750 steps on the step machine, or the height of the Washington Monument, TWICE, on Saturday.

On Sunday there was no Physical Therapy scheduled but Bonnie got a PT specialist to take her to the gym to work out anyway. 

Bonnie's upper body strength is getting so good that I considered canceling the stair-lift and just throwing a thick manila rope over the banister for her to climb, hand-over-hand.   Heck, the house is only 12 feet above the sand.

But the new front deck and 5' wide stairs are done.  Tomorrow the new stair-lift circuit goes in, and we have our building department inspections.

The stair-lift was delayed coming through customs in Canada yesterday, so now it is scheduled to get installed on Thursday morning.

I bring Bonnie home Thursday circa noon for her first ride up the stairs. 

If the lift is not done, we will haul her, in her wheelchair, up the stairs backwards.  She is eager to be back in her own home.  Even a vacation of 14 weeks would be a long time away from home.   14 weeks in 5 different hospitals will make this homecoming special.  

For the last two days, I have been deep-cleaning our house with Jim and Ruth, our NC friends.  They are helping me unpack boxes and complete the move-in we were amidst when Bonnie cracked her head in October. 

Tomorrow we steam clean the kitchen, and refrigerator, and re-organize the pantry and re-polish the Brazilian cherry floors. 

Bonnie's office / the guest bedroom and the grandkids bedroom still have boxes for Bonnie to go through and determine where things are to be placed.

The master bedroom has Bonnie's 37" LCD HDTV mounted.   The living room and dining room and kitchen and both bathrooms are ready to welcome Bonnie and our guests. 

Bonnie's wheelchair, and her new cosmic walker, shower chair / transfer bench and potty chair are being delivered tomorrow morning. 

Tomorrow afternoon, I go to the Coastal Rehabilitation for Bonnie and I to practice getting in and out of the Honda Odyssey.  Then we will meet with the doctors and get briefed on Bonnie's care and on-going physical and occupational therapy regimen.  Starting Friday we will have visits from physical and occupational therapists on alternate days and a home health care nurse every other day. 

Bonnie, in her inimitable way, sent me a revised one page, single-spaced shopping list for the Bouillabaisse dinner she is going to prepare for her son on Thursday and the beef and asparagus dinner she is preparing for her daughter, son-in-law and our NC grandchildren on Friday.  

This is not bad progress for a woman who was unconscious and under "Do Not Resuscitate" protocols 98 days ago.  45 days ago Bonnie could not swing her legs over the side of a bed.  Now she can walk 80 steps with her walker. 

I look forward to helping Bonnie cook for back-to-back dinner parties. 

Living with Bonnie is a non-stop adventure.

/Daniel for BanD

Day 97 - Bonnie walks 80 feet without rest. Then 30 feet.

It is a race to get the house ready in time for Bonnie to come home.   Bonnie continues to work out in the gym and to blow people's minds.  Today Bonnie walked 80 feet without having to rest.  Later today she was able to walk 30 steps.  Our entire beach house is 40' x 38'. 

Meanwhile, back at the ranch, Ron Drake our contractor ripped the front deck down to the joists.  He raised the deck surface 4.5" so it is flush with the front door threshold.  This will allow Bonnie to glide smoothly in and out of the house without a step or trip hazard. 

Before quitting for the day, Ron and our master carpenter Nate Dove created a new pair of 15' stair stringers,  and installed a new 5' wide flight of stairs.  This will allow ample room for the new StairLift scheduled to arrive on Tuesday.  

Bonnie is scheduled to come home on Thursday, and her son is flying in from LA to visit.   It will have been 104 days since Bonnie was last home. 

Monday and Tuesday a friend and I aim to unpack the remaining boxes from the first moving pod and to do a thorough spring cleaning.

Hurray,  Bonnie is coming home.

/Daniel for BanD

Day 96 - Bonnie walks 20 feet using her walker !!

Bonnie is really with it and following every turn of the Obama inauguration and confirmation hearings etc.   She was full of joy after watching her President and his family making their way through the day. 

But the greatest news from the 20th of January, Bonnie's 65th birthday, she was able to walk 20 feet using her walker. 

Her physical therapists are blown away by the level of commitment and effort Bonnie shows every session, every day.  They say Bonnie is among the best rehabilitation patients with whom they have ever worked.  And each specialist and nurse who attends to Bonnie says they have never, ever seen someone who has so many complications and health challenges. 

Bonnie says proudly that she has learned to be a "professional patient". 

Bonnie has prove to be good at whatever she is focusing on.  Now Bonnie is focusing on returning to her roles as a happy, healthy human being, GrandBe, author and spiritual direction for folks at her churches in Southport NC, and Palo Alto CA.

After years of study at the Episcopal Divinity School and conversations with Father William Barry, author of 15 books, including The Practice of Spiritual Direction, God and You, Finding God in All Things, Spiritual Direction and the Encounter with God, Who Do You Say I Am? Bonnie has come to her own understanding of Spiritual Direction.  She says she "is not to Direct, but rather to sip tea and listen to each person moving to fathom their relationships with the Infinite.  And to listen for what they are called to do in their life." 

From my vantage point, Bonnie has not only survived, but she continues to thrive because she finds goodness and grace in daily events in everyday life.  She re-invents each new situation as an opportunity to learn, and learning now is for the sake of serving her friends and family and her President. 

Please contact our dear friend BK Hipsher by e-mail to share your stories of Bonnie and any photographs you have.

BK will arrange a convenient time to interview you by iChat or Skype so we can give Bonnie a video album that unfolds her life through the eyes of those who know and love her. 

BK is a busy professional, so this project will take some months to complete, but it is the only "thing" I can give to Bonnie for her 65th birthday that she does not already have. 

Do think of your favorite Bonnie stories. 

BK Hipsher can be reached by e-mail at bkhipsher@earthlink.net. 

/Daniel for BanD

Update: Today Bonnie walked all the way across a big gym on her walker.  Unbelieveable. 

Here is a link to a quick photo album I gave to Bonnie as a placeholder for the gift you, her friends, are about to give to her in the form of a video album, with BK's kind assistance.

http://stillthinking.typepad.com/photos/bonnie_beloved_church_and/church-interior.html

Bonnie's view of the last three months

Three Months

Yesterday marked three months since THE INCIDENT.  Our current understanding is that I got a systemic infection that caused me to fall; there was no indication that I tried to break my fall which any who is conscious would try to do, for example.  Also my organ “decomposition” was more advanced than it would have been if it resulted from the fall.

I am back at a rehab at New Hanover hospital, where Jennifer works.  I see her most days, and had a wonderful visit with the grandchildren on Friday.  I am getting even better rehab here than in Durham; I didn’t think that would be possible.

I’m now able to stand up from a seated position if I’m sitting 30 inches off the ground.  Of course I need a handicapped walker, but I don’t usually need assistance.  My therapist expects I will be taking steps by Friday, because the hard part is standing up.

My address is Coastal Rehab Services, 2131 South 17th St., PO Box 9000, Wilmington, NC 28402.  The best ways to reach me are email, my cell phone (650-324-3816), and especially leaving a comment on posting on this blog.  I read the blog comments before email; I do respond to emails and usually don’t to comments.

Tomorrow I’m not answering the phone.  When I’m not in therapy, I’ll be totally absorbed in the inauguration.  I’ve told the therapists no work for me between 11:30 and 2.  We have a big screen TV in a common room here.  I’ll be watching with whoever chooses to watch from there.  It will be a good group of people, a real mix of ages, genders, race, and classes.  CNN has gone gaga over this inauguration, and so have I.

I get to watch a lot of CNN—up to 21 hours a day.  I have a little TV on a pole that I move around my bed. I don’t watch CNN all that time.  I watch the News Hour and MSNBC at night.  I listen to NPR until 9 am when the local PBS switches to music.  I downloaded a book on FDR’s first 100 days.  Did you know that other than the CCC, FDR had little interest in public infrastructure spending; that came some time after the first 100 days?  Congress authorized several billion for infrastructure spending, but Roosevelt said he  not imagine how they would spend as much as one billion.  We didn’t have a nation highway system, for example, that is always in need of repair.  I expect to be listening to the book several more times.  The economic issues were so complex even then.  I am glad we have a smart president, or will have tomorrow. 

I’ve also downloaded Doris Kearns Goodwin’s Team of Rivals.  The parallels of Lincoln and Obama are even more striking than I thought given what I’ve heard in the news media,  And I can see how much Obama is following Lincoln’s action.  John Seward was the senator from New York; he was the hands down favorite to get the new Republican party’s nomination for president.  But Lincoln was an astute politician according to Goodwin. 

My next listening will be how he secured the nomination at the convention in Chicago attended by 40,000 people.  He appointed Seward to be Secy of State and put the other two rivals for the nomination on the cabinet.  They thought Lincoln was a fool and intended to take over the govt while leaving Lincoln as a figurehead only.  But Lincoln quickly showed his leadership and they abandoned their plans and followed him loyally.  Seward became his best friend.  I’m eagerly looking forward to hearing how Lincoln won their respect and loyalty.  I know from the beginning of the book that part of it was his compassionate personal style, a characteristic Obama shares.

Please know that I am doing as well as I can.  I’m being well cared for by Daniel, Jennifer, and Scott.  The staff here is terrific to me.  I’m grateful to be alive and so grateful to you for praying for me.

Bonnie for BanD

Day 92 - Bonnie able to go from Sitting to Standing for a few seconds

Today is Day 92 and Bonnie is at Coastal Rehabilitation Hospital which is a part of New Hanover Regional Medical Center.  She is getting amazingly good care.  

Because Bonnie is immune compromised she has been put into a private room.  This is very unusual in a rehabilitation setting.  Her nurses wear masks and gowns and swab down the exercise equipment before she uses it with super-duty anti-biotic, anti-fungal wipes.  Bonnie is relieved that she is being so protected.  

Bonnie is able to transfer from her bed to her wheelchair and wheel herself into her bathroom and transfer to the handicapped toilet.  She is able to urinate normally.  What a relief.  She had her PIC line removed and thus is completely tube-free.   She was able stand up from a seated position using her walker and stand for 20 seconds.  Wow.  

Bonnie's nurses have called-in doctors of many stripes to help Bonnie get off as many of her medications as possible.  Bonnie has been taking so many drugs with dire side-effects, that she has been having to take drugs to counter the side-effects of other drugs:  3 grams of Cellcept can cause heart problems which require a beta-blocker, etc.  By the end of this week Bonnie should have all of her medical ailments, future procedures and medications lined up.  She is seeing different surgeons, an internist, an infectious disease specialist, a hematologist, a dentist, and ophthalmologist in addition to her physical and occupational therapists. 

Being exposed to a rapid succession of medical specialists can be devastating to one's health.  Each specialist is striving to make sure you do not die of the disease he is treating you for... but often there is NO ONE coordinating your medical care.  In this setting, mistakes are common. 

On Day 80, Bonnie had her routine post-surgical.  She went to see the Duke vascular surgeon who had amputated her toes and forefeet three weeks earlier.  Routinely the surgeon examines the surgical wounds and removes the stitches.  Apparently, when Bonnie's surgeon discovered the blood clots in Bonnie's thighs, she "forgot" to remove the stitches in Bonnie's feet, though they were obviously starting to become ingrown 21 days after her surgery.  

Even though Bonnie was re-admitted to Duke Hospital and was visited by Duke Vascular Surgeons, and Bonnie had the dressings on her feet changed daily, no one took care to remove the stitches that were becoming covered by healthy tissue.  Only when Bonnie was at NHRMC for a couple of days did a nurse notice, 31 days after Bonnie's surgery, that her stitches were ingrown and overdue to be removed.  But since the stitches were now so ingrown the nurse could not do so.  She had to call for a surgeon.  The surgeon arrived the following day with morphine, and sharp tools.  It was a bloody and painful session to remove a few dozen coarse black stitches that were binding Bonnie's amputation wounds shut. 

You would think that there is a simple pre-surgical and post-surgical checklist.  Here is an article by the Dr. Paul Levy, CEO of one of Boston's largest Hospitals regarding hospitals' unwillingness to use such checklists, even to control infectious diseases.

In response to this article, Dr. Brent James writes that we are 'Moving from “medicine as individual heroism” to “medicine as a team sport”'   But we are not there yet because individual doctors are accustomed to practicing “the craft of medicine.”  It’s the idea that every physician (or nurse, or technician, or administrator, etc.) is a personal expert, relying primarily on their personal commitment to excellence. In a very real sense, every physician occupies his/her own universe, with its own reality, truths, physical constants."

These insightful comments are from first-rate doctors talking among themselves about the state of medicine today, not from a patient advocate with an axe to grind. 

So, in light of our current health care culture, patients and advocates must keep the big picture of the patient's health and well-being in mind.  Patients and advocates need to make written notes of all medical actions taken, and all action items for follow up.  Clearly, I fell down on this count regarding getting Bonnie's stitches take out in a timely fashion.  Similarly, patients and advocates need to keep records of all drugs and conditions being treated by drugs, so when a condition is alleviated, one can ask for that drug to be discontinued.  

Almost every time we have changed hospital or changed floor within a hospital for 6.5 years we have discovered that drugs have either been discontinued when they need to be continued, or allergies lists are misplaced, or drugs are continued long after they are no longer needed.  This is the cost of medicine being practiced as a craft. 

You and I can hope that the doctors and nurses and computer systems will catch such oversights, but prudence and experience argue that you had better take care of these issues yourself.  

The costs of failing to be vigilant is pain and suffering, or worse.  

We are currently looking for a doctor who will become Bonnie's ombudsman.  

/Daniel for BanD

Day 87 - Bonnie is making great strides - and wearing down emotionally.

Our dear Bonnie is making great strides in her rehabilitation and coping with an array of biological challenges that would sink most anyone I know.  

Bonnie is able to place a transfer board under herself and securely create a bridge to her potty chair.  She can scoot across from the bed to the potty chair and from the potty chair to her wheelchair and spin herself off to Physical Therapy.  She was able to stand up with assistance, and to stay standing without outside assistance for 20 seconds, twice on Saturday.  Her physical therapist was very impressed with her determination and progress.  We celebrated with Goodberry's Butter Pecan frozen custard. 

Thankfully, Amy Hymas' midwife's wisdom about using Peppermint oil to help Bonnie's bladder and urethra come back and work naturally, WORKED.  After three days of sniffing Peppermint oil, Bonnie became progressively more and more able to pass urine normally.  No more catheterizations.  This is a huge improvement and step forward, as you might imagine. 

Currently Bonnie is working to gain coordination and strength in her calves and thighs and feet.  Fortunately she does not experience pain in her feet when she puts weight on them.  This is truly a blessing. 

Bonnie is ready to move from Durham's Regional Rehabilitation Hospital to Wilmington's Coastal Rehabilitation Facility on Thursday.  This will put her with a few minutes of her daughter Jennifer and her NC grandchildren and within a 2.5 hour round trip for me from Oak Island.

Thursday I will drive up to Durham and pick her up in the Honda Odyssey.  Bonnie is looking forward to being in our car and driving along with me.  We have loved across the country in this car.  We get to enjoy the 4 drive back through the piney woods and farmland of NC.  This time I have to drop her off at the Coastal Rehabilitation Facility which is in a wing of the New Hanover Regional Hospital.   Bonnie has now set her in-patient graduation date for Feb 9th so she can be home for my birthday February 10th.  That would be great.

What do you think we should do for Bonnie's 65th Birthday on 20 January? 

As I sit here, I am reminded that we will all have our attention rightly turned to Obama's inauguration and that Bonnie loves stitching video together.  It would be lovely if people could create video bits telling Bonnie about memorable time you have shared. 

For those who are video challenged, I think I can arrange to record an iChat session for those of you who have Macs.  Here is an amazing free screen capture application for the Mac or the PC.   YOU can create a clever "screen cast" for Bonnie, using any photos you have.  Whatever you can see on your computer screen you can capture and annotate and send on to Bons.   I think I can arrange to use Skype for those on PC's.  Just some ideas.  

As great as Bonnie's progress has been, she is feeling lonely, and worn out. Bonnie has declared that for the time being, she is not up for fighting back from another near fatal trauma, such as a heart attack or stroke.  She has re-instated her Do Not Resuscitate orders.  While I loosely wish Bonnie was willing to undergo another round of CPR if she were to have a heart problem for instance, I deeply understand her weariness.  I also get her caution / wisdom to not risk becoming physically or mentally so challenged that life no longer has meaning.  Bonnie has been both prayerful and very zen in her approach to this decision. 

Bonnie is on a beta blocker to keep her heart rate down enough for her to exercise, and Coumadin to dissolve the blood clots in her thighs, in addition to 3 GRAMS of Cellcept and 40 mgs of Prednisone to cope with any lingering Chronic Graft vs. Host Disease.  We need to query her Bone Marrow Specialist about this to see if we can wean Bonnie off of these caustic, immune suppression drugs.  If you look at the "side effects" of these drugs and what they are doing to Bonnie, you can see why I would like to see Bonnie off of these things ASAHP. 

Bonnie also has a finger surgery / digit amputation coming up, and the fitting of her carbon fiber insoles, shin wrapping orthapedic and toe filling devices and re-learning how to walk with them.  Bonnie also has a dozen cavities and crowns she will need to have fixed due to the attach of the Chronic Graft vs. Host Disease on her mouth.  And this summer we hope to have Bonnie's left eye operated on, and to replace her lens and cornea so she can regain sight in that eye.

I am on Oak Island working to get the permits and stairlift and house ready for her to return.  I am recovering from 5 days of flu and fever and exhaustion.  I find myself drained and without reserves, especially when dealing with mis-coordinations in Bonnie's care.  

Fortunately, my fever broke and today I was able to focus on the tasks to hand.

I thank our minister Margaret Irwin for her loving interactions with Bonnie today. 

If you have a moment, do send Bonnie an e-mail telling her of your favorite projects, kids or house remodels etc.  Bonnie blooms in the face of sunny social conversation. 

with love,

/Daniel for BanD

Black Eyed Peas

In the south (and elsewhere?) eating black-eyed peas on New Year’s Day brings good luck all year.  I don’t like black eyed peas.  Through my whole life I refused my mother’s urging to bring in the New Year with BEPs.  It was a running joke with the two of us.  I’d ordered pork for lunch on Jan 1, not noticing vegetables that came with it until I started eating.  And there they were.  I was suddenly reminded that this day was New Years.  I thought about how I’d probably never tasted them.  In honor of Mom, I tried some.  They were nicely cooked with a little Mexican style spice, but not hot. I liked them and ate them.  What else have I been missing all these years?  I need all the luck I can muster in 2009.  I feel fully armed with my New Years Peas.

 

Today, January 10, is the 99^th anniversary of my mother’s birth. I was 50 years old before I understood and appreciated my mother and the blessing she was in my life.  For many years, I didn’t know that not everyone had mother full of unconditional love.  I never had any doubt about how very much my mother loved me and that she would do anything for me whatever I did.  I feel sorry for people who don’t have that assurance; I cannot imagine what my life would have been without it.  Her favorite description of me was that “Bonnie Jean has her daddy’s brains and my guts.”  I was steeped in that story like fine tea brewed to perfection. It is the story that shaped me.  My mom is what we would call “upwardly mobile” today.  She came from a very poor, uneducated family, yet married a Rice University chemistry student who has often been described to me as “the most handsome man in Baytown.”  He was also one of the kindest and like Mom loved me without limit.  Daddy’s favorite light reading was the Encyclopedia Britannica.  I used to wonder how these two ever got together.  I’ve concluded that it was because Mom was just so sexy.  You would not think that from just looking at her.  She had tough kindness that made most people around her feel special.  In the years after Daddy died she collected four large diamond engagement rings, never re-marrying, but always keeping the rocks from men who were so happy to be able to give her something.  SOMETHING: that is what my mother was and continues to be for me.

 

Of all the great gifts and caring Daniel has given me over our twenty two year relationship, the greatest was the hospice tour he did with Mother in the last weeks of her life.   We flew to Jennifer’s wedding in early January of 1999 with a connection in Houston, hoping that she would be able to come with us.  It was not to be.  I got a call from my cousin Linda while in NC that Mom was in hospice and wanted to go home for the weeks left in her life.  We got off our return flight in Houston.  We brought her home, and few days later I left to back to work. For the weeks after that, I’d take the late SF flight to Houston on Friday evening and return the following Tuesday morning by nine.  Daniel was Mom’s principal hospice care person.  They build a strong bond over those weeks.  I was distressed, just barely able to stay awake while I was there.  Daniel was steadfast.  A decade before this, he had told me he wanted to get to know my mother before he would marry me; he figured that I would be like her when I was old, and he wanted to know that he could take care of me and would want to. How prophetic is that.

 

Mom would be so proud of the Obama election.  I wish she could have been here for so many things that have happened over the last decade.  How she would like loved those great grandchildren.  She would be proud that Jen gave Abi the middle name Jean.  She almost always called me Bonnie Jean.  But she was tired and ready to go to God.  She lived a long life, and like Frank Sinatra, she did it her way.  Whatever heaven is, I know she is there.

 

I’m back at Durham Regional Rehab.  All I have to do is rebuild some of the muscle strength I had on Oct 17, and restart some body functions.  It is amazingly hard. Iget very tired very fast. Today I was able to stand twice for twenty seconds with two people coaching and holding me.  It is a start.

 

Happy New Year!

Bonnie for BanD

Day 80 - Readmitted to Duke Hospital - Blood clots affecting Bonnie's feet.

Today is day 80 and Bonnie has made remarkable progress in her rehabilitation.  This is a long post to catch up on Bonnie's current physical, and emotional states and our ups and downs.  I apologize for our lapses in posting every other day; it is a cost of being preoccupied. 

The GOOD NEWS

Bonnie can now can sit up in bed and swing her legs over the side on, all her own.  These are skills re-learned at Durham Rehabilitation Center.  Bonnie can transfer from her bed to her wheelchair and goes to Occupational Therapy for an hour each day.  She then goes to Physical Therapy for 2 one hour sessions per day.  She has been able to be up and out of bed for 4 hours almost every day. 

According to the Occupational and Physical Therapists Bonnie is making remarkable strides for a person who has been flat on her back and confined to bed for 70 of the last 80 days.  40 days ago Bonnie could not lift her legs or even touch her face with her hands.  As usual Bonnie is exceeding all professional expectations.  Oh Bonnie, how deep is your well? 

This week Bonnie was able to wheel herself into the shower, transfer to the shower chair and wash her own hair and body.  Ahhhhhh.  This is wonderful progress in so many ways.  Self-care is an Act of hard won Freedom.  Too bad there are no Medals of Freedom for patients who MAKE their way back to a state of self-care. 

Last night we dined on a prime rib that I smoked over chunks of apple-wood.  I kept the pit at @ 275 F and pulled the side of beast out when it reached an internal temperature of 130 F, allowing it to cruise to 135 F as it rested.  I brought Bonnie the center 4 ribs and creamed horseradish sauce.  Bonnie loved the delicately smoky flavor of home cooking.  The prime rib came out to a perfect medium rare, that even survived reheating in a microwave oven.  I loved seeing Bonnie feel more like a whole human being eating her favorite Texas BBQ beef, on our home china, using her own chic stainless steel flatware, and watching the News Hour.  Bonnie remains mentally and politically acute.  She could probably still win a debate on fiscal policy with the likes of William F. Buckley.  She has learned to make her points with remarkable concision. 

The LESS than Good News

On the other hand. Bonnie has been repeatedly knocked flat by so many different biological challenges to her existence, over such a long period of time, that she now has some emotional and social rehabilitation to do.  She has lost some of her social conversational skills and timing, and speaks from the space of "a disabled, long-term patient".  Bonnie feels pitiful and looks frail.   She lives in this condition.  She responds to the conversations and love extended to her as IF such is done out of pity or pathos.  What gets lost are Eros, Philia and Agape - the simple love and sincere appreciation of Bonnie as a being-in-the-world, who is a pleasure to encounter, in most every conversation. 

Here is what works to un-stick Bonnie from the "disabled patient listening":   She loves conversing about the house improvements in preparation for her graduation from the Durham Rehabilitation Hospital and being at the beach by her 65th birthday on 20 January.  She aims to see Obama inauguration from her own black leather glider chair on her own Pioneer Kuro Plasma HDTV.  The queen of Broadband deserves no less.  Bonnie has already called Jennifer to arrange a play-day with her NC grandkids for Sunday 19 January at the beach house.  

Working on our book has Bonnie engaged in a world much bigger than ourselves.  She brightens up immediately and focuses on the how to illustrate the different domains of competence that are required to be a successful patient.  And of course, when she tells the latest stories about our grandchildren she is transported to a different space.  It is as if she is instantly surrounded by angels. 

Others people may be able to engage Bonnie in conversations about her Spiritual Direction work at her church. 

Friends from EDS and Bonnie's churches:  Please do engage with Bonnie on your spiritual life and her calling to do Spiritual Direction, by e-mail or phone as you think may best serve faithful conversation.  Bonnie needs people who are truly "up to the conversation" and who have a shared background.  I encourage Bonnie to speak with her wonderful mentor and colleague, William Barry. 

I see that I need to follow-up with the Chaplains at Duke and Durham Rehabilitation, so she gets her beloved sacrament delivered so she can commune with the Infinite every day, in her way.

What YOU can DO to help Bonnie Socialize

Bonnie also needs social engagement.  Since she is so interrupted by nurses, e-mail maybe the best way to hold an uninterrupted, high fidelity conversation with Bonnie for the next few days.  Let the spirit guide you.

What is up with Daniel

I had rough and short sleep, with nightmares of physical fights with my father.  I did well in the first three rounds.  In the last two rounds, my father  began to overwhelm me physically.  My father was amazingly physically strong until the last week of his life.  I am not sure which parts of my self are in what kinds of struggle with "me", but it was a choking experience.  I was saved by a 7:30 AM wake up call. 

Adventures just getting to the Duke Clinic

I made my way to Duke Hospital for Bonnie's post-surgery checkup on her feet.  At 8:30 AM on the surgical floor I was told that there is no 3B at Duke Hospital.  I needed to drive to the Duke Clinic.  I asked if I could walk.  Yes, but it is a long way and complicated.

I walked a very long way, got lost, and discovered that there IS NO 3B in the Duke Clinic either.  I called Bonnie.  She still had not left Durham Rehab which is half an hour away.  She had to call the Duke Surgery Dept, only to discover that they had given her the wrong floor number.  She is coming to 2B.  I am concerned that Bonnie is going to be late for her surgical checkup.  This is also going to make us late for her post eye-closure, Cornea checkup, which is critical and on the opposite side of the Hospital complex, three or four buildings away. 

It turns out that the nurse supervisor at the Durham Rehab Hospital would not let Bonnie leave their hospital with 150 cc of urine in her bladder.  They check Bonnie's bladder 4 times a day with an ultrasound machine. 

So Bonnie had to transfer back out of her wheelchair and street clothes and into her bed so she could be catheterized to pass urine.  The nurse on duty was not at all practiced at "installing a catheter".  Even with lidocane Bonnie had to endure some painful fumbling around.  They had to call in another nurse who was skilled at this procedure.  Bonnie has not yet recovered her capability to discharge urine on her own even though they have removed her Foley a week ago.  

Can you imagine having to be catheterized 4 times a day, for a week?  Add this to weeks and weeks of being stuck twice daily for glucose tests and insulin shots, along with daily blood draws of one or more vials of blood.  Oh, and then being awakened two or three times each night for blood pressure and temperature readings. 

Adventures in Health Care at Duke Clinics

Bonnie arrived to the Duke Clinic 2B in her wheelchair.  She looked pretty frail, with her left eye sewn shut, clutching a brown fleece blanket around her shoulders to stay warm.  Bonnie had to sit in her wheelchair and wait - for over an hour - before having her vital signs taken.  We were put into an exam room to sit for another 15 minutes. 

The nurse who finally came in to remove Bonnie's gauze dressings was remarkably obese.  It was difficult for her to reach down and remove the dressings.   She got the gauze caught on some very tough protruding black stitches that close Bonnie's amputated forefeet.  The nurse pulled some of the gauze free, causing Bonnie to vocalize her pain.  Bonnie had to ask the nurse to cut the last bits of the caught gauze with a scissors to spare her more pain. 

We all stared at Bonnie's very dark-red, mottled feet.  They do not look good.  The nurse leaves, saying nothing about the elephant in the room  We Wait.  Sit. Wait.  The doctor came in about 20 minutes later.  

The surgeon was pleased to see Bonnie's wounds healing well.  But we were all very concerned by dark-red mottled coloring of the skin covering Bonnie's feet.  We discussed whether this could be from Prednisone.  The surgeon feared it was a circulation problem.  We would have to wait for a Ultrasound exam.   

Bonnie was clever enough to ask if we could go to her eye exam and come back.  We hoped we would not have to wait at the end of a long line.  They approved this strategy and so off we went.

How to Get Admitted to an Examination Room Immediately

As we leave the General Surgery area of the Duke Clinic, I asked for directions from some uniformed people, who look like Medivac Transport pilots.  But the first two guys were very aloof, seemingly distracted.  Strangely they did not know their way around the hospital.  I began to read their patches on their baseball caps and jackets which read, "FCC Butner".  What is FCC Butner?  

I count 6 uniformed guys standing around the check-in desk.  I begin to gather that they are some kind of cops.  Then I see a guy in a wheelchair being wheeled in.  He has heavy handcuffs holding his wrists to his waist and matching leg cuffs   He exudes disdain and a strange sort of arrogance for a man so completely chained up.  He is immediately followed by 2 paramilitary guys in flak jackets, each holding a black machine gun at the ready.   The whole entourage is waved in: 6 guards, a wheel-chaired inmate, and 2 guys with machine guns disappear down the hall toward the examination rooms.  I imagine them all crammed into a room like the marching band in the alley at then end of Animal House.  Google confirms that FCC Butner is a Federal Prison.  This guy is a maximum security flight-risk. 

I am beginning to see how to get admitted right away without waiting, no matter when you arrive.  

Wheel Chair Races Between Appointments

I push Bonnie in her wheelchair out of the Duke Clinic and through the outside passage that snakes around and around.  It is raw, wet and cold outside.  The outdoor covered passage is several blocks long.  The Duke Eye clinic is at the opposite extreme of the Duke Medical complex.  We arrived an hour late for her eye exam.  We had to wait for about an hour before getting into an exam room.   Then waited for half an hour in the examination room before getting down to the heart of the examination of Bonnie's transplanted and now ulcerating Cornea. 

Moderately Good News on Bonnie's Cornea

Good news.  Finally, good news.  Bonnie's transplanted cornea had regained it's coverage of epithelial cells.  The cornea is still dented and thinned, but it is no longer "melting".  This exam was confirmed by Duke's Chief Ophthalmologist.  Bonnie is currently saving her transplanted cornea. 

We are going to leave Bonnie's eye sewn shut to continue to give her cornea protection and more time to heal.  One eye surgeon had to remove yet another stitch from her left Cornea.  Bonnie just sat forward in her wheelchair to rest her chin on a plastic support, and had yet another surgical procedure done on the most sensitive part of her eyeball. 

Imagine what would have happened to Bonnie's eye in the Rehab Hospital, if I had not seen what the Duke Bone Marrow Transfer doctor completely missed in Bonnie's pre-operative examination on 15 December.

More Waiting Around - 6 Hours in a Wheelchair

For Bonnie, a minor bit of eye surgery with a local anesthetic to her eyeball is "no problem".  Bonnie is instantly ready to scoot down the hall as if nothing happened.  We are off for a trek back through the Duke Hospital, out along the outdoor passageway for several blocks.  Before we venture out into the cold weather we pull up Bonnie's brown fleece blanket to form a hood over her head.  Bonnie looked like a Bennie Buffano Madonna sculpture rolling toward toward her next appointment. 

Bonnie had to wait another hour.  Bonnie had now been in her wheelchair for 6 hours, two hours longer than she spent weeks building up endurance to tolerate, with no bathroom breaks.   

Bonnie is looking more and more frail.  I ask the receptionist how long it will be?  She says she does not know.  I explain that Bonnie was transported here from a Rehabilitation Hospital and she can only stay up 4 - 5 hours a day.  I point out to the receptionist that Bonnie has been in her wheel chair now for over 6 hours.  I get that blank bureaucratic look.  No compassion.  Sealed mouth.  No apology.  But most critically, no change in her actions. 

Clearly Bonnie needs to be in handcuffs and I need a baseball cap and machine gun. I will see what I can do next time.  We notice that when there is a danger to the doctors and staff, responses are quick.  When there is a danger to a patient, responses are institutional and indolent. 

I finally ask the surgical receptionist to call transport to arrange to have Bonnie go back to her bed.  It will be 90 minutes more before she can get to rest in a bed.  She arranges transport and seem to get busier about getting Bonnie into the exam room just 150 feet away for the simple ultrasound exam.

Daniel Burns Out

I lose my willingness to observe this level of health care.  I go to get a fruit juice.  I return after 20 minutes.  Finally they take Bonnie in for the ultrasound exam on her feet.  I am clear that I have burned out.  I calculate that Bonnie does not need me to go through an ultrasound and I can not go in the transport back to the Rehab hospital.

I go find Bonnie and ask if I can go back to the hotel while she has the exam.  She says yes, go, go.  She looks really pale, blank and tired.  

Bonnie gets "LOST" between hospitals

A couple of hours later I get a call from the Bonnie's Case Supervisor at Durham Rehabilitation Hospital, wondering where Bonnie is.  Their AAA transport has not been called yet.  Oh man, the Surgical Department of Duke Hospital has lost my wife, again. 

I call Bonnie on her cellphone.  She is outside in her wheelchair in the cold wet air, waiting for the AAA transport.  

She tells me the ultrasound technician informed her that she has multiple blood clots in her thighs that are causing circulation problems in her feet.  She told Bonnie the Doctor would be "right in" to see her.  Bonnie said she would wait ten minutes and then she had to go back and get into a bed.  She simply could not sit up any longer.  The technician said "No, no, the Doctor will be right in".  Bonnie waited for 15 minutes for the surgeon, but the surgeon did not come back.  Folks, this is at one of the "Best Hospitals in the US" according to US News and World Report.   

When the wheel chair transport guy showed up, Bonnie went down to wait for the AAA transport van so she could finally get back to her bed at Durham Rehabilitation.  It is now 8 hours of being up and out for the first time in 80 days.  A catheter now sounded like a "great idea". 

After 3 calls with Bonnie, I discovered that a nurse from Duke Vascular Surgery chased down after Bonnie and found her waiting outside for her AAA transport.  Bonnie was informed that since she has multiple blood clots in her feet, she has to be admitted to Duke Hospital for more treatment.  Bonnie objects.  She is told she has no choice in the matter. 

Re-Admission to Duke Hospital

Does it surprise you that our frail Bonnie turned out to be the real flight-risk in the face of indolent care? 

The "health care" continued as Bonnie had to go back up to the Duke Clinic and endure a catheterization without lidocane attempted by a wonderful nurse, who unfortunately had not inserted a catheter in 25 years or more.   After 5 minutes of pain, another nurse took a try while the first nurse held Bonnie's legs down and apart.  Bonnie says she was in pain for a very long time.

It took Duke Hospital 4 hours to get Bonnie into a bed.  She would have been better off going back to Durham Rehabilitation, getting into her own bed and catheterized there by professionals.  She could have easily transferred to Duke Hospital when they actually had a bed ready for her.  But nope, somehow she had become a ward of Duke Hospital and their institutional rules, truly rule; patient pain and suffering is simply "unfortunate".   

Bonnie is now on the 8th floor at Duke Hospital in a surgical unit.  She was being wheeled out for a chest scan.  We agree that she will INSIST on getting a good PIC Line inserted this time;  no 2 AM wake-up procedure attempted by a resident/novice this time.  I ask Bonnie to insist on a skilled practitioner;  someone who can get a PIC line into Bonnie's beleaguered veins in the first 10 minutes of the procedure.  I pray that Bonnie really does insist.   She is becoming a "too compliant" patient for her own good. 

I am going to take a sleeping pill and see if I can get 8 hours of sleep so I can go and help Bonnie get her current full diagnosis and treatment plan for the blood clots.  Then I have to go over Durham Rehabilitation Hospital to clear out her room of her beloved radio, prayer book, medications, diaper wipes, butt rub and eye drops, computer and pictures of her grandkids. 

We have the permit to install the Stairlift for our front stairs and the permit to rebuild the steps and front porch.  We are working on yet another permit to put in a concrete pad and driveway so Bonnie can get around in a wheelchair, or walker or cane as she progresses.

I am going to also dilate the focus of my care.  I need rub Bonnie's skin all over with Nivea skin moisturizing creme and comfort her.  I am going to have the hair dresser wash her hair again.  We need to continue sit and hold hands and create a future with our grandkids asking her to read them a story and to tuck them in. 

What YOU can Do to help Bonnie

Bonnie needs her friends and family now, to help her be engaged and to socialize.  Everyday conversations about everyday events, kids, house renovations, spiritual growth - all are welcome.  We post all of the details of Bonnie's physical health here so you can focus on the rest of your shared world with Bonnie.  Please help us shift the focus to social subjects.

We need to extend ourselves from our current present "set and setting" and engage in what is possible and move toward our loved future with friends and family.

Bonnie does read her email now.  She is at Johnsonbca@yahoo.com

/Daniel for BanD

Sunday after-Christmas letter

 Those of you who have been reading this for a while know I LOVE Christmas.  The Episcopal Church is the church of Christmas day.

 

This is the day we celebrate God’s coming into us. In and through Christ, we are God’s hands in this world.

 

Throughout Advent, I wondered, even worried, about how I will be able to serve.  The day before Christmas, I got one of those angel kisses that remind me from time to time of God’s closeness.  Here is what happened. 

 

Daniel and I had been talking about how we could clean my hair that hadn’t been washed in two months.  Daniel went to ask people at the nurse’s station.  He came back with an amazing man and his clever equipment.  He is a professional hair dresser; his most clever equipment was an inflatable sink that went on my bed.  I got a great haircut.  As we talked to him about how pleased we were with his work, we learned that he had to leave a career in NYC when he became disabled.  He talked proudly about his hair work as God’s ministry.  Kiss, God reaching out to me to show the infinite variety of service.  His mission goes beyond cutting hair.  He has written a case base study guide to influence other beauticians to do hospital work.  He has worked on the legal requirements that lead hospitals to decline such services because of liability.

 

With clean, cut hair and an amazing story, I was set for Christmas.  It was simple; my sweetie anf eggnog.  I think Daniel has written about his eggnog adventures.  All the Pollards came to see me in my new rehab home. More later on this.

 

I’m on the 7^th floor and have great cell phone service.

 

Bonnie for BanD

 

Day 68 - Christmas - Duke Hospital - tomorrow Bonnie moves to Durham Rehabilitation

Today is Christmas.  Bonnie wanted an Egg Nog latte from Starbucks.  I drove around Durham trying to find a Starbucks or a grocery store that was open.  No luck.  

I finally found a BP gas station with a convenience store and bought the last quart of Egg Nog.  The owner wished us a Merry Christmas.  Duke Hospital has a Cafeteria that serves Starbuck's Coffee.  Bonnie and I mixed up our own Egg Nog Coffee's in Starbuck's cups.  It felt pretty festive.  

I got to help bathe Bonnie.  She is beautiful.  Her skin is healing, though the Tegaderm wounds on both shoulders and her breast remain pink and tender.  Her calves have atrophied significantly.  

Bonnie's legs were down to skin, bone and tendons.  70 days off of one's feet is a very long time.  Bonnie's quadriceps were similarly shrunken.  But since Bonnie has been doing her leg exercises her quadriceps are returning!  Her thighs are filling back out very nicely.  Her upper legs are quite strong.  

Bonnie has new shoes and she loves new shoes.  They are a very special shoe, very new on the orthopedic market.  This is the first time Duke has dispensed them.  They are like a cross of high top Nike basketball shoes AND open-toe Birkenstock sandals with Velcro closure straps.  These black suede shoes support Bonnie's foot and protect her foot surgeries.  

Getting fitted for state-of-the-art shoes, is one of the reasons I worked so hard to get Bonnie to Duke's Orthopedic Surgical Clinic.  Bonnie stood up in her new shoes, three times yesterday!  What a Christmas present!  

In 4 weeks, Bonnie will have to be fitted for complex orthopedic devices to allow Bonnie to walk without toes and the front portion of her forefeet.  These devices consist of carbon fiber insoles that go the full length of her shoes.  These insoles are connected to padded carbon fiber leg braces that wrap around her shins and strap behind her calves.  Of course there are also some compound foam inserts to fill out her shoes where her toes were. 

The toe fill-in devices will contact the site of her foot surgeries and have to be expertly fitted so as not to exacerbate Bonnie's wounds.  Everything has to work in concert with the carbon fiber braces and her legs.  

It will take at least a couple of specialists to enable to Bonnie to walk effectively, without producing chronic pain.  So we are doing everything we can to keep Bonnie near these specialists at Duke Orthopedic Clinic by doing her rehabilitation down the road at Durham's Rehabilitation Clinic.  

Now, to fill in the mystery surrounding why Bonnie's eye lid was sewn shut a couple of days ago.  

Monday 15 December, 60 minutes before Bonnie's amputation surgery, I noticed that Bonnie's left, transplanted Cornea was dented and was apparently deflating.  I feared that it had perforated again.  The Bone Marrow Transplant doctor on duty failed to notice it during his pre-surgical examination, despite the fact I had pointed to the problem with Bonnie's left cornea while he was examining her eyes.  He said, impatiently, "We will get back to this when I finish my exam".  He did not get back to it.  

Here is the issue: Bonnie's cornea went from "thinning" to perforation in a record time of 2 days, just 11 months ago.  Her perforated cornea allowed the aqueous fluid in her eyeball to leak.  If this leak had not been fixed in an emergency surgery, it would have caused Bonnie's eyeball to deflate and/or become infected.  Bonnie needs another complication like a hole in the head.

When Bonnie came out of her amputation surgery, I had to insist that an Ophthalmologist be called to inspect her eye while she was in the post-surgery recovery room, much to the annoyance of the Bone Marrow Doctor attending to Bonnie.  On the other hand, the Duke Ophthalmologist immediately saw that Bonnie's left Cornea was depressed and "thinning".  

Bonnie has been attended to by a Duke Ophthalmologist every day for the last week.  Two of her three eye doctors have been in touch with her renown Eye Surgeon at Mass Eye and Ear.   All of her eye doctors are concerned about saving her transplanted cornea and not allowing it to perforate as that would again threaten Bonnie's left eye.  

The eye doctors are having Bonnie put preservative-free eye drops in her left eye every hour and putting antibiotic drops in her eye 4 times a day.  Seven days after I first noticed the depression in Bonnie's cornea, she was finally able to get into a wheelchair and get down to the Eye Clinic for a full and proper eye examination.  The doctors confirmed that she has an "ulceration" of her left cornea.  They quickly decided to sew her left eye lid shut again, to minimize severe dry eye and to protect her cornea from the blinking action of her eyelid.  

The Doctor did NOT agree to put placental tissue over her eye which is the maximum fail-safe procedure done in February 2008.  We were not consulted if our objective was to try and save this transplanted Cornea.  There was no discussion of the treatment plan.  Bonnie sat in a wheelchair for 3 hours to have this consultation.  The Senior eye Doctor flitted in and out of the exam room 5 times, staying no longer than 100 seconds at a time.

The Senior eye Doctor said his clinical judgement is that Bonnie does not have Graft vs. Host Disease.  This discounts that Bonnie has a very dry mouth and severe dry eye, which are the signs of her CGvHD.  The Senior Ophthalmologist did not consult either Bonnie's previous eye surgeon nor the graft vs. host specialist who treated Bonnie's eye for the last year, both of whom had seen Bonnie 10 days before her fall. 

He also did not have time to review the photographs I had open on my Mac of Bonnie's cornea transplant surgery.  He repeatedly said he had never heard of Bonnie's renown surgeon at Mass Eye and Ear, she must be new.  Dr. Colby has been there for 14 years and is an assistant professor at Harvard Medical School.  He repeatedly told us that Bonnie's previous surgeon (Dr. Colby's) stitches were "too loose" without looking at photos of the stitches taken at the time of the surgery.  

He calculated aloud that if Bonnie's current transplant fails, she will get another transplant done in 30 days at Duke, or as soon as the transplant fails.  

We did not get to discuss this strategy, nor the fact that IF Bonnie has a transplant she will need to be refitted for a new Scleral Lens to address her now permanent case of Severe Dry Eye.  Fittings for a Scleral Lens can only be done at The Boston Foundation for Sight in Needham, Massachusetts. 

This is another time I have failed to do an adequate job as Bonnie's patient advocate.  I simply let Bonnie be forced into a surgery, without being fully consulted, so as not to be a "trouble-maker".  Now we are left to HOPE that Bonnie's transplanted Cornea does not perforate.  We pray that her left cornea will thicken AND it will re-grow it's covering epithelial cells without the aid of the placental tissue, which was required last time. 

Given my fatigue and inability to keep Bonnie in the driver's seat on each treatment, Duke has been a mixed blessing.  There has not been a whole lot of consulting the patient going on here.  Despite Duke's wonderful posters and rhetoric, Stanford University and Brigham and Womens and Dana Farber Cancer Institute and UNC-Chapel Hill Hospitals have proven to be far more willing to discuss treatment plans before committing us to a course of action.  

Tomorrow Bonnie will move to Durham Rehabilitation Facility.  

Today we are counting our blessings, which include clean drinking water, some amazing nurses and skilled doctors, and the love of family and friends.  

Daniel for BanD

Day 67 - Christmas Eve - Duke Hospital

It is Christmas eve.  

The night I used to put out presents for our children and my wife.  

This year we have no tree and no children or grandchildren around.  

Bonnie is laying in a hospital bed a block away.  I am in an empty hotel.

I have no presents, not even for my wife. 

The best I can do is to write here “On why I love my wife”  

Bonnie is smart.  

She is beautiful.  Her eyes smile.  

Yesterday she had her left eye sewn shut, without proper anesthetic, causing her great pain. 

The doctor hopes to save her left cornea, at least until she learns to walk on her amputated feet.  

In a month they may have to transplant her cornea and lens.  Hopefully Bonnie will no longer have Graft vs. Host Disease. 

I walked into her hospital room on Christmas eve and Bonnie's right eye smiled.  

Bonnie continues to smile, even though she continues to be dragged through the trials of Job.  

Medically speaking, Job could not have endured as long as Bonnie: In Job’s day there was no CPR, intubation or pressor drugs, no Dialysis, no Vancomycin or Prednisone, no Voriconazole or tracheotomies.  I have begun to wonder about our wonder drugs. 

I love my wife because she is full of Grace and she keeps turning toward Life.  Bonnie is full of thanks.  

We thank you each for your prayers and kind wishes. 

/Daniel for BanD