Bonnie Recovery

Bonnie was to come home today - but NO!

Hmmmmmm.  Seems the doctors thought better of releasing Bonnie until she can hold down her food and pills.   We hope she will be able to come home today.

--- Oh no, I just spoke to Bons. (9AM Wed 1 Nov)  Bonnie developed a 101.7 fever overnight.  She can not come home til she has no fever for 48 hours.  I was so excited about her coming home today, that I could not sleep and instead I did this weblog posting...  Now they are going through the "Let's culture everything" phase, all over again.  Hopefully no more endoscopy / colonoscopy / biopsies will be required to find the source of the fever and stomach pain.

Anyway, yesterday Bonnie enjoyed talking with friends from all over the country by cellphone and seems to be doing better and better, except for the eating part.   

Here was last night's adventure - and a funny story about 'social tokens' in communities.

Bonnie posting from hospital

Here I am posting ... I don't think I posted a single time in October!  It is strange to me that I could post regularly over nine months facing "dire" prognoses time and again, and then just when the future became a future for me, I became unable to think much less write.

Bud Lassiter called the problem first:  I have to be able to eat in order to live regardless of the state of my bone marrow.  And so I have been wrestling with nausea and an inability to digest what I swallow and that has wiped out the rest of me.   But I have decided enough is enough.  I've been here before and grown stronger from it.

I called the Dr. who heads both Harvard's Heath organization and also "integrative medicine" at Dana Farber.  He agrees it is now time for eastern medicine, beginning with accupuncture. I hope to be able to start that next week.  My platelet count is really down (now before 50, when only a few weeks ago it was almost 300). so, we shall see how soon ...

On cheerier notes

Yes, I'm home

I got out of the hospital about six pm on Friday, almost exactly two weeks after entering.  I had three different rounds of blood cultures plus scoping and xrays, but no positive results to indicate why I was having fever or nausea.  The latter is very typical of transplant patients during the first 100 days.  It isn't disease, but just normal transition.  Nausea is my #1 problem now, but being home makes it so much easier for me to eat.  I just finished three slices of amazing London Broil; some of my Honey's best ever.

I've slept the weekend away.  Stamina is my second problem.  As I eat more, I expect to have more stamina. 

I continue to be frustrated by this continuing weakeness and nausea, but I am confident that it will be improving, hopefully in these thirty-five days that lead me to the 100 day post transplant celebration.

Bonnie for BandD

Bonnie Diagnosed with BSOM

Bonnie is home, up and about and eating a bit more every day.  Bonnie is taking on her re-acquaintance with food and re-conditioning her heart as disciplines to achieve her goal of seeing her grandkids for the holidays.  We are not sure which holidays yet, but she is making progress in any event.

While Bonnie is now focused on re-establishing herself as an upright human being, she continues to be short of breath.  Bonnie is also running a low grade fever on and off everyday, but her blood is normal or almost normal on all counts.  Wow.  This is a miraculous turnabout.

We went to see the doctors at DFCI yesterday.  The whole team of gastroenterologists, hemotologists, cardiologists, oncologists, infectious disease specialists, and her bone marrow specialist have settled on a diagnosis of BSOM after months of probing, imaging, culturing and testing.  BSOM is short for "Beats the Stuffing Out of Me" - we just do not know what is going on with you. 

Dr. Cutler is very happy with Bonnie's complete blood counts, dare I say even amazed.  He double checked that the blood test results displayed were actually from Bonnie's blood. 

But he is not at all happy with Bonnie's continuing breathlessness and high heart rate -- after standing up and walking a few steps Bonnie' heart rate is about 145 bpm.  So.....

Another Week

I got out of the hospital about this time last week.  It has, once again, felt like a blessing just to sleep in my own bed.  I've slept a bit less and walked a very little bit more each day.  I still don't have anything like a "normal" feeling, but I'm confident that will come.  I'm grateful to have missed the dread graft vs host disease so far, and since I'll get medications that Dr. Cutler has found to be effective in preventing chronic GVHD, I am confident that I will continue to improve.

I'm looking forward to a peaceful weekend; I hope you'll have one too.

Bonnie for BandD

Bonnie has to go back to the Hospital again.

We visited DFCI for Bonnie's weekly check up and Dr. Cutler insists that Bonnie has to return to Brigham and Women's Hospital again to diagnose and treat her breathing difficulties. 

The doctors see some opacity on the CAT scan of her lungs.  Since Bonnie has been experiencing increasing chest pain and difficulty in breathing, they assess that it is now necessary to do a bronchoscopy to biopsy what is actually going on in her lungs.  The initial diagnosis is some form of pneumonia.  I read on the Mayo Clinic site that there are at least 50 types of pneumonia. 

Once they know what is going on, presumably what kind of infection it is, they can target the source with some anti-biotic, or anti-fungal or anti-viral or some such.

Bonnie is not happy about having to return to BWH.  I am fit to be tied.  We are at home waiting for a call that they have a bed for Bonnie.   

If you are the praying type, please add Bonnie to your prayers.  If you are of the good thoughts variety, please send Bonnie an e-mail recalling what good thoughts occur to you when you think of Bonnie Jean.

/Daniel for BanD

How are we going to Cross the Quality Chasm in Modern Medicine?

Bonnie was re-admitted to Brigham and Womens Hospital at 10 PM Tuesday night.  When Bonnie arrived the staff was clueless; There were NO Neutropenic Precautions posted on the door:  Bonnie's nurses did NOT wear masks or gloves when they came in while I was on the 16th floor.  Bonnie says that it took approximately 1.5 hours for her to get Neutropenic Precautions posted on her door.  She actually requires Bone Marrow Transplant precautions which are even more rigorous.

When she met with the doctor on duty, she observed that the staff did not seem to know how to take proper precautions in caring for her.  Bonnie says the doctor replied, This is not a Bone Marrow Transplant floor, and this staff is not used to Neutropenic Precautions: Bonnie would have to tell them what was needed.

Note:  Bonnie was sent back to BWH because Bonnie could not speak in complete sentences.  What is wrong with this picture? 

Bonnie had to cease eating and drinking at 12 midnight last night for her surgical procedure / tests today.  By 2 PM today the doctors were still discussing what they were looking for in the proposed tests.  Apparently the pulmonary doctors thought they saw water in her lungs.  Dr. Cutler said he thought not. Okay.....Discuss among yourselves.  In the meantime, can Bonnie please drink some Ensure while she is waiting?

When I spoke to Bonnie at about 4:30 PM said she "was in agony during the procedure" despite having been given morphine in the morning to prepare for the exam and then again just before the exam. 

My research suggests that a bronchoscopy is not supposed to cause severe pain, if proper numbing is done and the procedure is conducted with patience and care.  In 4.5 years of trial by fire Bonnie has never reported being in agony, including during 15 bone marrow biopsies.  I intend to find out what went on in this case. 

In any event. Bonnie reports that the doctors did not find water in her lungs.  They did "flush out" some areas of her lungs and then vacuumed out the fluid which they will culture so they may know what is wrong with Bonnie, maybe some day this week....or not.

In the meantime, she is running a 101.7 fever, and entertaining nurses and aides who interrupt her for vital signs and medications so often that we are not able to have a five minute telephone conversation.

Bonnie is hooked up to the infusion machine again and on intravenous antibiotics, though the doctors do not know what bacteria, virus or fungus they are trying to kill.

Today's National News featured the following report - "Many states will soon require hospitals to report their infection rates."  Cold comfort. 

And then this from an ABC 20/20 News broadcast last year: "Charles Bell: Consumers think of hospitals as places that you go to get medical treatment, to be healed and to get well. They would be surprised to learn how dangerous it is to go to hospitals. In fact, about one out of every 20 patients experiences a hospital-acquired infection each year. That translates into 2 million people – 90,000 people who die each year. That's more than auto accidents and homicides combined."

This stunning fatality statistic is based on people with intact immune systems and those who do not stay in the hospital for 125 days in one year.

Today I started escalating my requests that BWH staff keep hygiene up to medical standards appropriate for a Bone Marrow Transplant patient.  I now need to add insuring that Bonnie gets the proper pain medications.  Good grief.  We know that there is no excuse for agony in modern medicine.

I hope that I will have positive items to report tomorrow, if only who at DFCI and BWH is signing up to take care of the recent "lapses".  Skip Nesker, a nationally syndicated reporter used to finish his newscasts during the Viet Nam War by saying "If you don't like the news, go out and make some yourself".

Want to create some new news?

A patient-centered health care movement is beginning to flower in the wake of this major report by the Institute of Medicine:  "Crossing the Quality Chasm: A New Health System for the 21st Century" ,  I am researching what you and I can do to participate, if only to protect the interests of ourselves and our family members. 

In the meantime, you may find downloading and skimming the report or The Executive Summary of Crossing the Quality Chasm both interesting and useful for YOUR future as a patient or care-giver in our health care system.

The truly good news is that some hospitals are finally taking action on the Institute of Medicine report.

During Bonnie's work as a chaplain at Bellingham's St. Joseph's Hospital, in the summer of 2005, she participated in Don Berwick's campaign to "Save 100,000 Lives" by reducing medical errors,  I believe IOM statistics indicate that the campaign succeeded in saving approximately 100,000 lives.

I may need your help to make sure Bonnie does not become a statistic.  Stay tuned.

/Daniel for BanD   
                          And for other patients who need advocates for their right to health CARE practiced to modern medical standards -- including the wisdom of Pasteur, Lister and Selye . 

 

Home Again, Home Again

I am stroking Bonnie's silky new hair in the comfort of our tiny apartment.  Think of the best days of your life.  That is what we are experiencing tonight. 

Executive Summary of Bonnie's 6th incarceration in "The Brig":  All of the doctors and all of the kings men could find NO evidence of pneumonia: NO positive cultures from her lungs: NO evidence of an active infection - fungal, viral or bacterial from any of the draws, biopsies or fluids extracted from Bonnie.  BSOM again.

The pulmonary specialist and his team of 3 doctors arrived to Bonnie's room in the Brig and said "Sometimes it is good to simply know what it ISN'T.  You can go home now."  It took us all of 20 minutes to clear out of Dodge.

Many, many of you have written to Bonnie and to me.  People have been praying for us in dozens of traditions and languages of the heart.  Some of you have asked if we could sense your thoughts directed toward us.  We truly needed your support this time round.  Each of you touch and encourage us.  You should see Bonnie's face when she reads her e-mail.  I trust that she will be up to writing soon again.

This is our 388th day in "Round Two" of our dance with Leukemia and Medical Institutions.  We may have reached the half way point in our path back to some new normal.

When your chips are down and people rally 'round, you will know the fidelity of the thanks Bonnie and I wish you take away from this message.  Please dwell in our appreciation of YOU.  The list of who you are is even longer than our distribution list.

I am particularly grateful for Eric Dishman's insight and support on the Long Term Cancer Survivor and Patient Advocate fronts.  We continue to be amazed by Eric's ambition and progress.  We pray that Intel's embryonic Health Care Division will flourish and do some of what is so needed and wanted today.

In reflecting on our conversations and re-reading portions of Crossing the Quality Chasm, I have hope again.  People like you and I CAN change our health care system.  I speculate this will occur only WHEN we fathom that the status quo is truly broken and unworkable, and WHEN you and I insist that we PARTICIPATE in the re-creation of health CARE; each according to our respective gifts and callings.  What calls you? 

I thank Dr. David Rosenthal, Head of the Zakim Center for Integrative Medicine at Dana Farber Cancer Institute for forwarding my list of breakdowns at The Brig to the head of Brigham and Womens Hospital Community and Patient Relations. 

I appreciated the active listening demonstrated in my third meeting with 5 representatives of Brigham and Womens Hosptial Community and Patient Relations.  I say again, active listening is nice; effective ACTION to correct the breakdowns is at least ten times better.  I hold you accountable for your promises. 

I am retiring the warrior for the evening, so I can touch and enjoy a most amazing human being.  Hug someone you love and tell them what they mean to you.

/Daniel ... uhhhh can I go backstage now... really, I am with the BanD.

Holding me by the ankles: THANK YOU

Daniel and I have an expression for what happened to me in Stanford Hospital four years ago; he was “holding me by the ankles” so that I wouldn’t slip away. With your help, he did that again last week. When I went to the doc last Tuesday (the 14^th), I had lost all my spirit. Even shallow breathing was extremely painful. It was discouraging to be in a wheelchair when I’m supposed to be on the mend. Daniel sent out a rallying call to you for help, and I’ve been overwhelmed by the response on the blog and by email. You wrote so beautifully of a Bonnie whom I had lost, a powerful and optimistic one. During my hospital stay, I held on to those images you sent of me. They were indeed holding me in this world when the discouragement of pain was about to overtake me. How can I ever thank you?

I’m doing so much better now. The pain is largely gone; it only hurts when I breathe deeply. My appetite has improved. Love and imagery are powerful medicine. I’m grateful for a husband who knows me well enough to call for help and for you for responding so lovingly.

Anniversary Yesterday - Docs Tomorrow.

We celebrated our 18th wedding anniversary yesterday.  Chocolate Ensure high protein formula was the Bonnie's drink of choice.  I trust Bonnie will be back to Domaine Chandon Blanc de Noir for our 19th anniversary. 

It seems like many lifetimes ago that we were married.  It HAS BEEN many life times: graduations of our children, weddings, doing hospice for 2 parents, careers and different homes for each of our children, new digs on the east coast for us, AND 3.47 grandchildren.  Bonnie is counting the days until the next integer. 

Three years ago, after Bonnie's first diagnosis of MDS and then AML and during Bonnie's 13th month of remission, we created new marriage vows and exchanged new wedding bands in Palo Alto with a few friends as witnesses.

We have enjoyed four years of "overtime" that most people with our diagnosis never get.  It has been a time of deep joy at the sheer wonder of life which is so vast...

Do you wonder, along with us, how prayer and the kind of friendship we have with you "works" in the world.  I mean when we observe the past 4.5 years, using physics and biology as our descriptive paths, what can we say and ground as being so?

We see the doctors at DCFI tomorrow for Bonnie's 16th Bone Marrow Biopsy.

We shall see what stories her latest "core sample" tells in the coming week or so.  We may see some Leukemic cells.  Whatever shows up, we will persist and prevail, with the continuing Grace of God. 

Bonnie is very tired.  Two hours of e-mail and EDS work fatigued her today.  She needed 4 hours of bed rest to recover.  Fortunately she is not in any great pain. Imagine taking a shower sitting on a shower chair and it being a 20 minute aerobic workout.

But Bonnie is a bit more Bonnie everyday.  Her mind is quick and she is funny,  particularly as she channels her grandsons' latest tricks and antics as reported to us.  Bonnie plays all of the parts, with just the right voices and she makes the appropriate faces and hand gestures.  Who needs HDTV? 

/Daniel for BanD

No Blasts Found - and Bonnie Needs to Eat and Walk.

Dr. Cutler says there are no blasts (Leukemic) cells visible in Bonnie's bone marrow aspirate (blood) taken during Tuesday's bone marrow biopsy.  This is a good preliminary report.  We will know if she qualifies for the Graft vs. Host Disease drug trial when the bone marrow core sample is back from the pathologists on Tuesday.

Bonnie continues to sleep as much as 18 hours a day.  She is not eating or walking enough to satisfy the doctor's minimum requirements.  She has to reverse this soon or she will not have the reserves for independent living or to fight an infection etc. 

I need help to get Bonnie to eat more, to bathe daily to protect herself from infections, and to take even the tiniest walks.  I am just about "all in".  I can not push anymore.

It is not a matter of "cheering me on".  I need real help.  If you have cycles of attention, either pray for Bonnie or call and encourage Bonnie to eat and walk.

/Daniel  for  BanD.