Bonnie Recovery

Constellations - Tipping Points

Bonnie seemed healthy enough for me to take a trip back to Palo Alto CA for the Interval Research reunion.  I was looking forward to the trip.  But night by night I grew more certain that this was not the week to be flying out of town.  Without good grounds, I simply canceled my trip to see my friends and my Pacific Ocean.  Within a few hours Bonnie discovered that she was running a 100.1 fever.  Oh no, not again.   A few hours later my sister called to tell me that our 85 year-old mother was in the hospital with abdominal pains and a fever.  I called a friend in CA to say I was not coming and he told me his home had been broken into and many valuables taken.   Constellations of events, felt, unseen.   

My friend said he had sensed that something was not right for weeks but he ignored the signs.  In retrospect his coming and goings and house were probably being cased.  We talked about reading the signs in life and acting according to our callings, even when the call to look up or to change, is not explicable. 

Autumnal Colors - Re:births in the coming year.

Bonnie continues to be happy, though very tired, and short of breath when she stands up or walks.  Bonnie is concerned and "tired of being tired."  The doctor said this is to be expected due to her low red blood counts and the rigors of a bone marrow transplant.  We shall see what he has to say on Tuesday, as Bonnie sleeps 18 hours or more per day, and her energy level and appetite are dwindling  significantly.

Bonnie was deconditioned by spending 108 days in the hospital over the past 180 days.  Our doctors at Stanford told us their rule of thumb is that it takes 2.5 days for every 1 day of hospital stays to recover from being bed ridden.  We are on a 260-360 day cruise through recovery.  Chaulk it up to the cost of being newly reborn.

But today, we escaped our reverse-quarantined apartment and went off to see the Fall leaves in New Hampshire and Maine.  Hurray.

It was a lovely trip, with the autumnal colors and cool air as our backdrop.  We stretched out as we drove: sensing ourselves as biological entities, outside of our monastic cell, and in the Fall of our lives.  We drove past covered-bridges and hills with yellow and red-leaved trees reflected in the mill ponds and lakes.  We visualized unseen roads in the year ahead.

God willing and the creek don't rise, we will go to North Carolina in twenty days, after Bonnie's visit to her Bone Marrow Transplant / Graft vs. Host Disease specialist at Dana Farber.

I see that we have been living out of a 5 part recipe for reverting our lives with  Leukemia, to lives free of disease.   Here is our recipe, for what it is worth:

Saw the Doctor at Dana Farber today. uhhhh

We have good news, and less than good news.

We saw the Doctor at DFCI today and the blood tests seem to confirm that the "against all odds" engraftment has taken place.  Bonnie is finally into a high normal range for her White Blood Count and Platelets, for the first time in one year.  This is truly Good News.

The less than good news, is that over the past two weeks Bonnie has become increasingly breathless, and exhausted. 

She is now sleeping 18 hours a day and having to lie down on the couch all but an hour a day.   Bonnie has not been able to hold down more than 800 calories per day and she is losing weight and lean muscle mass.  Bonnie now needs to use her walker to go out of the house. 

When our Doctor at Dana Farber walked into the exam room and saw Bonnie's pale face and walker he expressed alarm and concern.  I would say his face turned ashen.

He has changed some of Bonnie's medicines, which he hopes will help her with her fatigue, and nausea.

Bonnie is returning to DFCI for a red blood transfusion today at 2PM, which should help her heart and breathing.

Focusing on the good news, Bonnie now has a chance for disease-free survival. 

We simply have to deal with her low hematocrit, the oxygen carrying part of her red blood, and her racing heart rate, nausea and fatigue.   

We trust that over the next week or two we will see a real improvement in all of these vital functions.  We are grateful for our lives and you.

/Daniel for BanD

 

Bonnie Hospitalized again.

Bonnie is back at Brigham and Womens Hospital in a hyper clean room for transplant patients.  I was getting my oral surgery done in Palo Alto CA, and Bonnie began to have increased nausea and stomach cramps.  A day later a fever showed up.  Bonnie apparently has an infection; Bacterial, viral, fungal?  Whatever, this is bad news.

On Friday morning, Susan Langle drove Bonnie to Dana Farber Cancer Institute to see what was up.  DFCI immediately put Bonnie on oxygen, intravenous fluids and antibiotics, and gave her some morphine for the stomach pains, and two units of blood as rapidly as they could coordinate the infusion of each ingredient.  When DFCI had arranged a bed for Bonnie at BWH, she was re-admitted.  Bonnie is now on a bone marrow transplant floor which has the highest levels of precautions to prevent infections in people with no immune systems.   

I flew back on the first plane from San Francisco. 

No One Knows

Well after a week of observation and the most invasive tests one can imagine no one at DFCI or BWH knows what has been causing the pains in Bonnie's gut or the fevers and her inability to hold food down.

The doctors put tubes down into Bonnie's stomach for a look around and took a biopsy for good measure.  Then a doctor who was concerned about Bonnie's lowish blood pressure and pulse, would not give Bonnie a full dose of painkillers or anaesthetic for her colonoscopy and biopsy, despite her calling out in pain.  I only heard of this episode later, or I would have made sure that Bonnie had been administered the anaesthetics normally given to patients in Western countries practicing modern medicine. 

I did walk in on a in-room surgery to insert a peripheral line in a vein in Bonnie's arm.  A surgical assistant had defeated the mechanism on a trash bin in Bonnie's room to lock it open for her convenience.  I watched the surgery in my surgical mask and gloves for a few minutes and then asked why the garbage can was locked open. 

The surgical assistant said that it was okay because it was "not close" to Bonnie.  I said "Really, an open trash can is okay in a surgical theater?"  No one moved.  So I asked "Shall I photograph this and send it to Dr. Paul Farmer?"  He is a world reknown expert at Harvard on Environmental Health.  The surgical assistant rolled her eyes and slammed shut the lid to the trash can.   Ten minutes later they inserted a fine white tube into Bonnie's arm and up into her neck.  That tube had been lying open out of it's sterile plastic wrapper, 3 feet from the open garbage can.  It was inserted before I could react.  Dear Lord, what was that sound?  Oh, it was just John Lister and Louis Pasteur rolling over in their graves. 

BWH patient relations representative acted truly grateful for my report on this below standard performance and promises corrective action.  Little wonder that every single one of Bonnie's central lines at BWH has become infected. 

After a week of anti-biotics and infusions of blood and morphine Bonnie is now able to hold down soup, and toast.  I think she tried some light food yesterday and kept it down.  Bonnie is looking and sounding a bit more like herself each day.

Bonnie needs hugging but I have had stomach "issues" since I returned and am afraid to get too close to her, even in my sterile gloves and mask.  I press on her legs and feet to "hug her."

I am anxious and depressed.  I had so hoped to be in NC to celebrate our third grandson's first birthday and watching the magic elixir of Bonnie's grandsons and her daughter on Bonnie's health.  Bonnie simply stretches out in front of her ocean and grandkids.  She can not say "no" to them when they urge her out of bed.  But here we are: Bonnie is in yet another hospital room, and I am sleeping alone again in our too big bed in Cambridge.  I hope that Bonnie will just hold down some food and come home soon.

I am deeply aware of the amount of de-conditioning Bonnie has experienced from spending 120 days being wiped out in hospital bed after hospital bed over the last 200 calendar days.  This predicts 1.5 years of re-conditioning and a very long road back to any semblance of normal life.

But there is the key word.  Life.  Thank God we are experiencing the ups and downs in Life.  I would not want to face the alternative.  Bonnie come home soon.

I just came back from two hours with Bons.  She is better.  She sat up with me in her black leather glider chair.  Tomorrow she should be off of the infusion machine.  Currently she is strategizing how and when to take her meds and some food, the old fashioned way - by mouth.   

Dr. Stone dropped in on Bonnie this afternoon and listened to the mystery of her symptoms and all of the negative tests.   He said "It sounds like Graft vs. Host Disease to me."  Bonnie told him that the other docs thought not.  He reminded her that her body is in the middle of a very strange biological flight from trapeze to trapeze and that inexplicible phenomena show up in the 100-200 days she is switching from one blood system to another.  Dr. Stone promised to dig through her recent medical record and see if he could help the other Docs sort out these weird symptoms and test results.  Cool.  I feel better having such a mind reviewing the evidence. 

But most of all, I feel better just having sat with Bonnie for a couple of hours and seeing her being more herself.  Bonnie hopes to be coming home Monday or Tuesday next week.  We are about 60 days into the first 100 days and anything but GvHD attacking an organ will suffice at this time. 

Of course, Bonnie dropped her telephone smashing the screen and disabling it, so it may be a day or two before I have a replacement phone turned on for Bonnie. 

What is it with us and telephones when we really need them? 

/Daniel for BanD

 

Sunday with Bonnie

Bonnie Jean is an amazing woman.  She was a joy to be with today.   I caught up on the "Bonnie report" and the grandkids and studied her blood chemistry reports for half an hour.  She is making white blood steadily in the normal range which is vital, but she is not doing as well with her platelets or red blood cells.  She still needs transfusions, which we had hoped to be beyond by now.

When Bonnie dozed off, I slept on the cot in her room.  It was one of those days where I felt so happy just to be hanging out in the same space with her, even if it was yet another hospital room.

The doctors are still baffled by her symptoms.  Bonnie asked Dr. Cutler if it is normal after a Bone Marrow Transplant for some symptoms to just show up that are not easily explained.  He shook his head and said "No, you simply 'present' differently than any patient Dr. Stone or I have ever had.  You make us really work to figure out what is up and what to do."

They have taken Bonnie off of an anti-immune drug as it was showing way too high levels in her blood.  It apparently takes a while to drop down as it is still way too high three days after she stopped taking it. 

In the meantime, Bonnie creeps up on her apple sauce and her pills and does her best to keep them down.  Ouch.  Bonnie has lost 45 lbs since March on the Dana Farber Chemotherapy / Bone Marrow Transplant diet.  I do not expect it to sweep the nation no matter how effective it proves to be.  The side-effects will never allow it to become a big seller.

All I can say is that I love our Bonnie Jean, who never ceases to amaze me with her grace and balance and sense of humor. 

The doctors may let her come home soon on the theory that she is off of the infusion machine and has not had a fever in 48 hours and can be sick at home as well as she can in the hospital.  They sure have not figured out what to do for her and a hospital is a terrible place for someone with a compromised immune system.

Unless they have something they are going to do to actively treat Bonnie it will soon be my turn to see if I can get her to hold down some nourishment.    

/Daniel for BanD 

Bonnie may come home tomorrow

Bonnie may be coming home tomorrow, although she is still not able to hold food down.  She is brave about it.  We are going to have to work with the doctors and nutritionists on this.

There were two families on opposite wings of the 6th floor who were crying and hugging tonight;  Their loved ones are not coming home.  It is touching to walk among families facing the end of life together.  I guess I have seen about 18 such scenes on the floors we have been on over the last year.  It is also amazing to see how the nurses and doctors deal with the families and their work with other patients.  It is not business as usual.  And life goes on.  Human beings are remarkable.

Thanks for your love and support.  We appreciate it more than we can express.

/Daniel for BanD