October 21

Dear Friends, Dear Friends, After 59 days in the hospital, Bonnie is finally back home and taking small steps on her path to recovery.

This process is going to take time.

We are deeply grateful for your e-mails, calls, cards, letters, and the help that so many of you have provided over the past few months.

Bonnie is recovering her ability to talk, though her voice is still bit shaky and her speech is sometimes halting. Bonnie is also recovering her ability to walk; Yesterday, she called a 20 step walk out the front door “a road trip”. Clearly, her sense of humor has returned.

Bonnie has regained her ability to fight infections, which she is using to good effect; She has a deep bronchial infection and racking cough, probably as a result of having water in her lungs due to her kidney failure due to the anti-fungal medicines she was given during her tour of duty. The ham bone is connected to the thigh bone is connected to the etc.

During Bonnie’s incarceration we did learn a few of oxymorons: Hospital Food, Insurance Payment, and a Team of Doctors.

We go to an out-patient dialysis center in Redwood City to get Bonnie’s “oil changed” three times a week. Because the place is so heavily booked, we have to check in at 5:45 AM for a 6 AM slot. The place looks like a 24 Hour Nautilus, with 25 hi-tech stations, florescent lights and people watching TV’s while they use the machines, except here a workout is three hours in length. Fortunately, the machines do all the work. It is actually an encouraging trip, as Bonnie looks to be the healthiest person in the place. We have been so consumed learning about AML, we have not yet had the time to learn about Bonnie’s new “cohort” (people with compromised kidneys) though we trust Eric Dishman can teach us the lingo and any secret handshake Bonnie may need, if she is going to be a member of this community for an extended period of time.

You have not lived until you find that you are genuinely happy to be awakened in the middle of the night to the sound of your spouse peeing!

We are actually deeply happy and find our home and each other’s company to be so luxurious we can hardly believe we have been so blessed with our lives and children and friends. That would be you. Thanks !

With love,

Daniel

October 8

Dear Friends, Dear Friends of Bonnie,

This is 48th day that Bonnie has been in Stanford’s Hospital.

The last ten days have been an extreme challenge to all of Bonnie’s systems.

Having her daughter Jennifer here, and her grandson, Zachary has been wonderful for all of us, and friends keep rallying around.

Bonnie’s kidneys remain shut down, her lungs take on water, her heart intermittently fails to pump properly and her heart rate goes dangerously high, her liver shows signs of damage, and her speech is haltingly slow now. Bonnie has developed a stress ulcer in her stomach. Episodically her ulcer is sufficiently painful to require one or more shots of morphine to control the pain. Bonnie must prepare her stomach with Prilosec and/or Maalox in order to take her heart medications, minerals, anti-biotics, vitamins ad nauseum.

Bonnie had not slept well for over ten days. She has been moved around from Cardiac Intensive Care, to Post Operative Intensive Care, and then back to her beloved “F Ground” Compromised Host Unit for 8 hours, oppssss your heart went over 140,

back to Post Operative Intensive Care. Here Bonnie shared a heart-monitored room, with a man who had to be tied into his bed, as he experienced his hell of alcohol induced delirium tremens.

You know you have been going down the halls of the hospital way to long when you no longer see the art, but you can easily spot other souls like you going in the opposite direction, with that particular kind of fatigue on their face; Oh, she must have a loved one in for “long duration”. We nod and smile at each other and keep walking.

Bonnie’s white blood count soared from a healthy 12,000 to the extreme of 23,000 in response to an infection and/or because the doctors overshot her with the human growth hormone. Bonnie’s bone marrow beds, which her chemotherapy had completely wiped out, had to be triggered back into the production of blood cells. Human growth hormone is the chemical trigger. Like much of the modern medicine applied to Bonnie so far…. Ooopppssss, whooaaa, ohh way too much, so sorry.

When her heart seemed semi-stable Bonnie was moved to ‘rest and recuperate’ in a “private room” in a high care unit with heart monitors, which has the hi-tech feature of a unit-wide overhead PA system, used to loudly hail nurses 5 to 10 times an hour to respond to various emergencies. I am a healthy human being, and I could not take being in Bonnie’s room for more than 14 hours; the soundscape was more than my nervous system could deal with. Zachary covers his ears. I fled the hospital three nights ago, with hospital scenes flashing through my mind like some Hieronymus Bosch depiction of ‘Modern Medicine’ being delivered as sarcasm against the human soul, which tears could not erase, nor reason assuage.

As I walk the hospital halls, I often think of “Hospital disease” which killed many, if not most, surgery patients during the Civil War. Germs and infections were not understood. Ironically, in1865 Lister first used carbolic acid to stop infection of the blood by disease-producing microorganisms. Pasteur and Lister’s work were resisted for some years but within 40 years clean, antiseptic medical practices were commonplace.

Yet in the last 50 years, we have yet to integrate Hans Selye’s pioneering work on Stress into hospital design and practice. Selye distinguished stress as observable biological phenomena, and further showed the correlation between distress and disease. There were no words for “stress” in German or in French. I walk along in a daze; why has accepted scientific fact been so slow to find pragmatic expression in modern medical practice?

Speaking of stress, on Friday Bonnie and our family met with six or seven of her Maha-doctors, who replied to most of our questions, “We simply do not know” and then in Latinate phrases, exactly what and why they do not know about Bonnie’s heart, kidneys, liver or bone marrow…speech: all too early to tell how much healthy function will return.

Bonnie asked at what point she could leave bedlam of the hospital and go home to live or die. These truly good and kind doctors, said “We are not at that point now”. Yet their use of the word “we” was an odd amalgom of solidarity and non-comprehension of whose life “we” were discussing. Bonnie, though very slow of speech, was very quick of mind and began to dissect the logic of staying in the hospital, and to negotiate for her freedom to go home, or at least to get out of bed, and off of her heart monitor long enough for a wheel chair ride to the gardens. She carefully, torturously formed the words “What if we take my heart off the table?” The doctors seemed stunned.

I had to translate to confirm their understanding. I asked Bonnie if she meant, “If Bonnie is willing to die of a heart attack, can she be placed back in a quiet room where she can get some sleep?” She nodded her head, that I had translated her thoughts properly. (I know my wife’s style of logic and negotiation, and was happy to be in the role of translator for a change.)

The doctor who had just noblely assured her that all treatment was finally up to Bonnie and that she had freedom to choose how she was cared for, unwitingly reversed himself and said he was “not comfortable” with her choice to die of heart failure (low odds) compared to the all too certain problems she experiences without sleep, solid food and related stresses. It was an amazing conversation, for the ground it covered and the blindnesses it revealed, ours included. At least, we now know the approximate pecking order of the doctors who have worked on her “case”.

Saturday night Bonnie returned for a third time to the F Ground Unit, where someone of her family or friends is with her 24 hours a day, to help her and keep her from getting moved back to ICU again. Mercifully Bonnie got 5 hours of sleep in a row Saturday night when I slept in her room and tonight (Sunday night) Bonnie was fast asleep with Bud Lassiter spending the night watching over her.

Her white blood count came back just a few thousand above ”high normal”, at 13,000. Her fever was down to just over 100 F today. She had some nurishment, and with the physical therapist, she was able to walk 10 steps to the bathroom, rest, and the 10 steps back to bed. Tomorrow she is going to try 15 steps from the door to her bathroom.

Bonnie is on the mend. As the doctors say, “all of your numbers are a bit better today”.

While Bonnie’s cracked lips make it hard to smile, and her chemo-burned mouth makes it hard to speak, I see more of a sense of humor returning to her eyes. Bonnie gets dialysis today, which is both a strain on her heart, and a relief to her organs, as it removes accumulating toxins from her blood.

Jennifer is certain Bonnie will make it back home. Bonnie says she will recover, but she will be different. I welcome different, so long as Bonnie comes home. I got deeply this week, that no one can take care of this alone. Hard realization for a male, an American, and a German-Jew raised in a superhero culture. Surrender? Ask for help.

Despite my disappointment with modern medicine, in the end this is now mostly between Bonnie and her Higher Power / Nature or however you distinguish that vastness out which we arise and draw breath. Whatever the case, Bonnie continues to work her way through her Saint Ignatius Spiritual Exercises. You know Bonnie, she is going to finish what she has started.

There are moments when we look at each other, and it is still. We each know how much we love the other. We say the oddest things, like how truly happy we are just now; Happy to be together and to have this time and agenda to attend to together. And then a nurse comes in to take her vital signs and realities kalediscope back to the business of living admist the institution of Stanford Hospital.

We are deeply grateful for life, and all of our friends who have prayed and/or expressed their love and good will, and willingness to us. We thank you each. We are touched.

What amazing grace Bonnie reveals as she moves toward her horizons each new day.

Daniel

SEPTEMBER 29

Dear Friends, Bonnie continues to amaze all who interact with her. Doctors, nurses, friends all comment on Bonnie's sense of balance and grace as she slices through gate after gate in her downhill slalom at the edge of modern medicine. She has been at it for 38 days now.

In truth, Bonnie has hit an icy section approaching the finish area, after an athletic performance higher up the hill.

Bonnie continues to be alert and to deal with each new sickness, side-effect and complication in turn, in good humor, and a mood of gratefulness for her life, family and friends, oh and for the roses, and for her grandson and ….. you get it… Bonnie holds that we have been blessed and that life is good because it is good, not because it is infinitely long.

After 38 days of this course, Bonnie is very tired. She has been sleep deprived by shortness of breath from water in her lungs due to her current kidney failure, a side-effect of the succession of heavy-duty anti-fungal drugs she was given over the last several weeks to ward off the infections that came as a result of the complete eradication of her white blood cells, a designed-in “feature” of her initial two rounds of chemotherapy, by the way: all to make Bonnie better.

Bonnie’s renal failure has required dialysis, and so she is currently in one of Stanford Hospital’s Intensive Care Units. The whole course had Bonnie's heart beating 180 times a minute and above last night. Leslie Eveland, who is with Bonnie most days, reports that Bonnie's response this morning to her night heart rate of 180 and the athletic breathing goes along with it.. "Well, 180 is within my training rate". Next subject. How is the house coming? and Jennifer and Zach are coming in a day early..." You know, Bonnie.

Bonnie got some relief from the dialysis; Her breathing is easier, her color is returning and she told me was going to get some good sleep now (Thursday night) .. and now Friday morning she did sleep well and in relative comfort.

The doctors say that Bonnie is no longer in critical condition. Her physicians are hopeful, but far from certain that her kidneys will return to normal function. We will know more about this as the week progresses. I will post the current prognosis when there is one. In the meantime, Bonnie will have dialysis three times a week until she no longer requires it.

The Doctors emphasize that Bonnie’s white blood counts are finally improving, particularly the critical neutrophils she needs. Go baby blood cells.

Her white blood count went from weeks of 100, then to a hopeful 200, and back to 100, then 600 to 1,100 and now 3,500 today. I never thought I would attach so much significance to a single number. 3,500 is the highest her white blood count has been in over a year. I am told that a white blood count of 4,000 is the low end of the normal range.

Bonnie, being Bonnie, took the last 5 weeks to complete the first three weeks of the Saint Ignatius Spiritual exercises --- Clearly, Saint Ignatius did not design these exercises to be done in the midst of two rounds of induction chemotherapy and it’s aftermath. In any case, Bonnie has entered into the fourth week, which is called “The Contemplation to Reach Love”.

“Ignatius begins this contemplation with an unusual and characteristic note. Before you begin he suggests, be mindful of two things about love: Love is in deeds, not words; and love entails constant, generous mutual sharing between the lover and the beloved. He describes here the way that God loves, and the point of this contemplation is precisely to enter upon the way God loves. The point is not to obtain God’s love, or to learn to love God. It is to know how to love how God loves, and to love God, and every other person that way”

Bonnie continues to reshape her self for the rest of her life and to roll her eyes in good humor at the absurd scenes that form as waves of white-coated people come in and surround her bed, and in their wake leave more machinery and lines attached to Bonnie’s chest and inner thigh. The Lilliputians of modern medicine have tethered her to their scientific ground. I trust that Bonnie and her Nature will make them look good soon.

Your good thoughts and prayers are most appreciated.

If you are in condition to enter yourself into the national bone marrow donor bank and/or to donate blood, such are gifts of love, indeed.

Thank you for your interest and concern and love for Bonnie.

Daniel

SEPTEMBER 12

[Update from Daniel]

Dear Friends of Bonnie, Bonnie's Bone Marrow is finally clear of all leukemic "blast" cells, according to the doctors who have read her most recent bone marrow biopsy. They are very pleased with her progress.

Bonnie, and an pretty mean anti-fungal medication, are warding off a fungal infection. Keeping Bonnie free of infection and giving her blood transfusions to help her regain her strength are the main foci of her medical treatment now. The anti-fungal medication impinges on her kidneys and heart function, though these are being very closely monitored and Bonnie seems to be weathering these storms well.

Bonnie is due to start Human Growth Hormone therapy tomorrow, which we trust will turn her body's blood production systems back on, so she can begin to create her own blood cells in her newly cleared-out bone marrow. In the meantime, she is happy to be receiving whole blood.

Bonnie and her mother and her family have been lifelong blood donors, so it is literally heart warming to see the return flow here. I was surprised when I joined the national bone marrow bank, that bone marrow donations are taken by giving peripheral blood... nothing more than a normal blood draw. Cool, simple, painless.

Bonnie says if you are able to give blood, or to become a bone marrow donor, these are the most precious gifts she and her new cohort can receive from you. http://www.marrow.org/DONOR/donor_information_idx.html

Bonnie continues to be steadily upbeat emotionally. She seems to buoy up all who call and visit with her.

Bonnie continues to make wonderful progress in her way through the Saint Ignatius spiritual exercises being administered by a dear friend and former Jesuit priest, now a Zen priest, who helped start the Zen Hospice in SF. They are remarkable together.

Bonnie is at the physical nadir of this round of chemotherapy; meaning she is physically tired and winded much of the time.

Bonnie loves to hear from her friends by e-mail or by voice. You can call her at 650-498-3082 and leave a message with your news and views if she is not able to pickup the phone. She loves to hear people's news, about their kids, grandkids, remodels, their discoveries and other life affirming pieces... Bonnie remains confident she will return to health, and says she is on the long road back.

Bonnie thanks everyone for their kind wishes and prayers. She gets that she is loved. And this is a great gift to her. Bone marrow donors have a special place in her heart... as this is a source of life to her and those in her condition.

as ever Daniel

THURSDAY SEPTEMBER 5

[Update from Daniel]

Generally Bonnie continues to engage well with her chemotherapy for AML, with mostly good and predicted results, though of course the ride is not smooth.

Last night Bonnie had a hard night last night, with a high fever due to a fungal infection and tremors brought on by an anti-fungal medication.

The most recent bone marrow test showed that they had not gotten all of the leukemic blood cells out of her bone marrow, so they have restarted her induction chemo last night. She will get 3 or 4 more days of chemo and a new bone marrow test.

She is in for the down hill portion of this roller coaster ride in the next ten days. Your prayers, good wishes are both helpful and appreciated.

I slept in Bonnie's room at the hospital last night and may continue to do so, so do not be alarmed if you can not raise me by telephone. If you leave a message I will return your call when I am able.

Bonnie looked and sounded much better this morning. She continues to be at the top of her form spiritually and emotionally, and considering the rapids she is shooting, she is in remarkably good shape physically.

The head of Stanford Hematology lab is currently her attending physician and he says he is very confident she will come through this next round of chemotherapy, and come to have clean bone marrow, so she can start rebuilding her blood normally in her cleaned up bone marrow.

We are approaching the edge of the envelop for chemo in terms of duration of induction chemotherapy, as one can not keep a body on antibiotics for more than 40 or 45 days without serious risk of a runaway infection.

The head of Hematology just informed us that he thinks Bonnie will need 4 more rounds of chemo before they can do a bone marrow transplant in six months. She is going to be a busy girl with all this treatment.

Bonnie likes to visit with people by telephone and if you are completely free of any trace of colds or infections, she is seeing her friends in room Stanford Hospital, F Wing, Ground Floor, Room F043. You will have to wash your hands and face with the hopsital's antibiotic soap for 5 minutes before entering her room. I have never been so clean in my life. The good news is that there is an anti-bacterial hand creme ...

Bonnie's direct telephone number is 650-498-3082. She continues to be level-headed and guardedly optimistic. While one can not avoid conversation of Bonnie's health, diagonsis and treatment, it is getting to be an old and somewhat worn conversation for Bonnie, so your news and thoughtful views, and your creative spirits are what are most welcome as the focus and means of conversation.

as ever, only older. Daniel

posted September 5, 2002

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FRIDAY AUGUST 23

Here are some new photos for you...

posted August 23, 2002

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THURSDAY AUGUST 22

I've now half way through my chemo induction. It is high dosage of two drugs: Idarubicin and Cytosine Arabinoside. I get the drug over the first several days here. The drugs will wip out cells in my bone marrow and they will then rebuild themselves. We are counting on the healthy cells to rebuilt more and that those bad unhealthy ones will dissolve and not come back.

So far I've had only mild side effects because the drugs they give me to combat nausea, for example, are quite powerful. I'm walking three times a day, though I have to wear a mask when I leave my heavily ventilated room. As my blood begins to weaken I too will weaken. I expect to be here a month while my body rebuilds itself.

Kathy McAdams and Erin Crhistenson were here for a private communion today. My son, Ron, is here from Los Angeles (I even beat him one game of dominoes today)

My room is bright, full of love, hope, and pictures of
these pictures of Zachary and more. My continuing thanks to Lyn Bishop for building and hosting this site.

Love to you all,
Bonnie

posted August 22, 2002

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TUESDAY AUGUST 20

I'm off to Stanford for a 9 am check in and then to my room where I will be called to recieve a "port"... a catheter inserted in my chest to receive drugs, blood, etc.

I'm of good spirits... all things considered.

posted August 20, 2002

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MONDAY AUGUST 19

Welcome to my "Update" site, my friends [You are probably on the email list for this site because I have corresponded with you in johnsonbca@yahoo.com and have you on that address book. Please feel free to send the link to my other friends who would want to know about this.]

Most people ask how I knew I was sick. I didn't really. Only a miracle of my body led to the discovery. While working to get our beach house in North Carolina ready for summer renters, I noticed that I had a red rash all over my body. I made an appointment to see my physician upon my return to California. She said that the rash was not serious and would go away (it did two days later), but ordered a blood test just in case. The result of the blood test was that my white blood count was low. Again, not much reason for alarm, but I needed to see a Hematologist. I decided to do that at Stanford.

While my blood counts presented no cause for alarm, my doctor at Stanford said I should have a bone marrow biopsy "just in case." The result of that was a diagnosis of : myelodysplasia syndrome. I have an advanced form of it called "RAEB-t or RAEBIT" (curiously, I call my home computer Rabbit... it's fast).

I elected not to enter the hospital immediately for intense induction chemotherapy (HD). Zachay's first birthday was only a week away, and going to N.C. to be with him and those who love him was my first priority. I have been engaged in activities to improve my overall health before starting the Chemo therapy... these activities have included enjoying time with Zachary, our children, Jennifer and Scott, Ron, and Debrah, and our new son, Ryan. You see here some of my favorite pictures of Zachary.

The beautiful but abstract pictures on these pages are micro images of blood being made in the marrow and of blood cells doing their thing, bringing health and protecting the body. I mediate on these images to assist my body in remembering its "instruction set" for re-creating me.

My official entry to Stanford's "Compromised Host" unit is August 20th. I'd originally planned on the 26th, but decided that I am ready for the challenge of overcoming this disease now.

What can you do? You can pray for me and that my bone marrow will repair the chromosones that provide instructions for creating blood. You can register with the National Bone Marrow bank (it is a simple as giving blood); a transplant is likely to be my bridge to the future and the more candidates for transplant, the greater opportunity for life all of us with compromised blood diseases will have. I love getting jokes, but no flowers, plants, nor food is allowed in this ward.

I will be in Stanford for a week of intensive chemo (to reset my bone marrow), then lounging there until my immunity system rebuilts itself, perhaps a month. The idea is that the healthy cells will rebuild faster than the others. I'm settling in for a renewal of spirit as well as body in this month.

With the help of Lyn Bishop (who designed and is currently hosting this beautiful site), we will try to keep this site updated with my progress. By next week, we hope to have a weblog structure for a more conversational style.

Love to you all

posted August 19, 2002

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