Bonnie Recovery

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

 

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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