Bonnie Recovery

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

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

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

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