Bonnie Recovery

No biopsy today

     My bone marrow biopsy was cancelled today. Dr. Stone is a pretty smart guy. Daniel and I had fretted over what my doctors would do with what we fully expected to be an ambiguous result: are these baby cells or leukemic cells in my marrow? Stone will wait until my daily blood tests are more stable, for example, when I do not have those “half formed” cells in my circulating blood before invading my marrow. Otherwise, he says, “we’d just have to do it again.”  This might be Friday or sometime the following week, but before day 40 of my hospitalization.

     We continue to be impressed with his “no wine before its time” approach: he doesn’t act until there is a direction for action. We were able to have our fine two months in North Carolina because he saw no reason to act before we had a donor direction. This approach gives us a lot of confidence in him; also it is a good lesson for us to learn in our own approach to life.

      I’m luxuriating in the hospitality of Brigham & Women’s Hospital for some time to come.  I can have company.  I know that I have some out-of-town friends who must be coming through Boston occasionally.  I’d love to see you.  On Saturday, Debby Hindus dropped by from San Francisco with her brother and his wife Sharon.  I’ve come to know Sharon first through Debby’s stories, then by meeting her after moving to Boston.  Sharon has been in her own valiant battles with tumors.  It was inspiring to see her.  She is not just in remission, but better than that; doctors use some term that I’ve forgotten, but that is a close as doctors will get to saying “cure.”

     Laura Brisbee and Dot Allen cheered me up with California pictures, including this one.  Ah, to see a bonsai again.  Ah, to be spore free!

     Today is Susan Langle's birthday.  She came with Christi and brought communion as only a birthday communion could be. (pictures to be added)

     You’ll see a new addition to the right hand column called “Express.” I suspect that I have friends who want to know how I am, but don’t want to figure that out from my prose. I’m starting a posting, which I hope will be a daily posting, summarizing the important facts of my case:

     At a specified date, am I in the hospital or where?

     Has my white blood count climbed, or am I still neutropenic?

     Do I have a fever (a sign of germs and fungus that are my health risks now)?

When is enough, enough?

Daniel writes:  By my count, it is day 31 of Bonnie's chemo cruise.  I find myself at loose ends.

What can I do now, aside from keeping Bonnie in fresh pajamas and lillac duvet covers?

I thought a rack of lamb smoked over hickory wood, hot and juicy from our BBQ, would surely excite those baby blood cells to re-double their production.  Nope. 

I sent bottles of Blood Orange Italian Soda to the Hematology doctors and their staff.  They thought it was funny to read my prescription for them; "Drink this BLOOD Orange Italian Soda, while visualizing Bonnie making baby blood cells, specifically white blood cells.  Repeat until Bonnie's WBC is 6000."

But still Bonnie's WBC hovers around 500.  So I ask myself, when is enough, enough?  Can she come home yet?

We can be sure that the Doctors have their answers about what, and therefore when, it is "enough". 

But here is my top 7 list of how I know this is enough, already!

5 months of blogging

I wrote my first blog entry five months ago today.  Back then I thought I'd be through this.  Instead we have taken a slower, more careful journey.  I'm still waiting for my neutrophil count to jump up to 500 so that I can go home.  I'll get a bone marrow biopsy tomorrow or the next day. 

Yesterday was one of those extra slow days for me on which I can't seem to revive myself enough to turn on my computer.  I felt that my body was going through a transition.  I've heard from my nurse that my white count jumped to .67 from its week of hovering around .5.   To go home white count needs to be at least 1.0 with 50% neutrophils.  Any Day Now, I shall be released.

In the meantime, I've listened to the 12 hour audiobook of Karen Armstrong's new book The Great Transformation, and started a second listening.  Dear friends from EDS have come almost everyday with Eucharist and news of the events on Campus.  Daniel continues his daily pilgrimage to see me and bring me sparkingly lemon and orange soda as well as his enormous love for me.  I continue in my prayers and meditations. 

Overall, I'm good and looking forward to my trip back across the Charles.

Dancing and Singing after a Bone Marrow Biopsy

Well, Bonnie was dancing and singing after her Bone Marrow Biopsy tonight. 

I could tell you the whole story of her tenth Bone Marrow Biopsy;  I was down on my knees to hold her hand, sort of a front row, fifty yard line seat: but stories of surgery done under a local anesthetic make me want to burn off both of my ears.

It is sufficient to say that Bonnie was her usual self as Dr. Stone used her to teach an intern how he does this essential procedure.   Though Bonnie is from Texas, and her daddy was a chemist at Humble Oil (now Exxon) they did not strike oil when they went wildcatting for a good spot on her pelvis.  But they did get all of the bone marrow samples they will need to see what is going on at her biological core. 

We should hear the results by Thursday evening.  We already know that there will be blasts, and we will have to work with the doctors to find a path forward. 

But the real event of the day was getting Bonnie a "day pass" to leave the hospital this Friday so she can see her grandsons and their parents when they are in New England.  We do not yet know if she will have to go back immediately for more treatment and/or hospital care or if, after Friday, Bonnie will have some time off to recover at home.

But with the biopsy behind her and seeing her loved ones ahead of her you can visualize Bonnie sitting up in bed with her hands over her head quietly singing and swaying her hips in some primal victory dance.

There were white clouds blown like a sheer curtain across the sky, which lit up in pinks and orange as the sunset over the Charles tonight.   Life is both beautiful and good.  /Daniel

God draws near

Today was a tearful day for our Bonnie. 

Bonnie and I had a teacher who used to ask "Why do you think humans give such significance to a small collection of salty water when it leaks from our eyes?"  Crying is such a natural response.  There are tears of grief, there are tears of joy, there are tears of pain, and there are tears of relief. 

Years ago Bonnie discovered a kind of crying that signifies to her that God has drawn near.   Today, she tells me, was such a day. 

It began with her preliminary morning blood counts coming back showing that all of her blood counts had dropped over night and all of them had dropped precipitously. 

Going HOME Today

I Imagine how I'd feel if this very day the powers that be announced a complete troop withdrawal from Iraq.  I'd be happy.  I'd say 'it's about time.' And I would wonder if the pain and expense had been worthwhile.  I'd pray for the best.

I'm going home today and that is about how I feel.  I'm not leaving with the 500 neutrophil count that had been the objective.   Preliminary biopsy of bone asparate indicates that I have about as much leukemia as I entered with 36 days ago. So what of all this pain endured by me and my near ones, and how do we justify the expense?  I'm praying for the best.

As you know, I was sent home from Stanford after two months with much the same results from a bone marrow biopsy.  Since my kidneys and heart were so damaged, I could get no more treatment.  And I went on to a record remission.  My body's history indicates that it simply takes more time to "normalize."  I believe my higher power and the prayers of people who love me bring about that normalization.

I cried a lot yesterday and today of feel a spiritual renewal.  Katherine, the hospital chaplain here points how how tears are a form of baptismal renewal.

I have a lot of packing to do to get out of here today.  I've already told my nurse that I'd like room 12 (bigger) if and when I come back for more chemo. 

Zac, Luc, Jen, and Scott are scheduled to come to Boston tomorrow.  Those boys are my PROVEN healers. 

Stay tuned, in good cheer.   Love Bonnie

HOME

My hospital stay was OK in many ways.  I felt safe and well taken care of.  My days of feeling really sick were few.  I was never bored and I enjoyed the retreat-like atmosphere for prayer and meditation.  Visits for company and communion brightened almost every day.

My time at home again has been a total joy.  This day is wonderful.  I sit in my glider and watch the green of trees outside.  I hear the birds (I missed hearing the birds in the hospital).  I walked the two blocks to chapel this morning without sitting down (all the benches along the way were wet). 

It feels so good to feel good.

Our friend, Hugh Pyle, sent this Robert Frost poem that speaks so clearly and sweetly to how I feel held by you.

The Silken Tent

Robert Frost

She is as in a field a silken tent
At midday, when a sunny summer breeze
Has dried the dew, and all its ropes relent
So that in guys it gently sways at ease
And its supporting central cedar pole
That is its pinnacle to heavenward
And signifies the sureness of the soul
Seems to owe naught to any single cord
But, strictly held by none, is loosely bound
By countless silken ties of love and thought
To everything on earth the compass 'round
And only by one going slightly taut
In the capriciousness of summer air
Is of the slightest bondage made aware

 

Joyful Waiting

We saw Dr. Stone at Dana Farber today.  My blood counts were up just slightly, meaning that I continue to be neutropenic, but have a count of 150 neutrophils that provide some natural protection.   The final results of the bone marrow biopsy indicate that I have about as much leukemia as I had when I went into the hospital.  This sounds bad, but it is about what happened in 2002, so we are not discouraged.

Because I'm stable on antibiotics and have this weird history, we agreed to wait and see what will happen over the next few weeks.  I will be going to Dana Farber weekly for blood tests and re-examination of my status.  I will not be able to have a bone marrow transplant unless my bone marrow is almost completely clear of indications of leukemia.  This could happen on its own over the next few weeks as it did in 2002, or I may have to re-enter the hospital for another round of intense chemotherapy and a 30+ day stay. 

The good news is that right now nothing is forcing me back into the hospital.  I'm growing stronger each day.  Jennifer, Scott, Zac, and Lucas came last Thursday.  We had a wonderful visit over a day and a half.  I was up at 5:30 am to watch cartoons with Zac.  We went to the store for DVD's.  I was the energizer bunny until they left on Friday night when I crashed for 14 hours.   Saturday we had friends come to see us from California.  Sunday I went to church.

This is graduation week at EDS; we have lots of festivities and chapel services.  I expect to be at all of them with my mask on.

Daniel and I are grateful to be surrounded by friends and family and to have this time for reflection and getting stronger. 

Back to writing

Last Wednesday Daniel and I celebrated a week of my being home.  That is one week or TWO trips (by Daniel) to Trader Joe's for essential supplies such as Blood Orange Soda, Maple Pecan Clusters, Cream Cheese and Lox.  I have none of the food aversion that characterized my hospital stay.  As long as I get a healthy dose of caffeine, I'm fairly perky.

Since passing that one week milestone, I’m turned my attention to writing, especially to completing my spring courses.  I’ve written and turned in the final paper for the “Life as Pilgrimage” online course.  It feels great to be complete, though I will miss the regular correspondence we enjoyed in the course.  The assignment was to consider “skills for discovering meaning in the events of our lives” using Anne Lamott’s Traveling Mercies as a resource for articulating these skills.  Mostly I wrote about keeping this blog.  I see now more than ever how essential it is that I write what is honest for me.  When I write about incidents where others have been present, I consider what they would say about that event and seek to be honest in telling of the incident.  The challenge is to write what is honest for me in interpreting that event.  Of all the therapy for healing I’ve had over the last six months, this challenge to honesty may be the most important to me. 

Back to the Hospital Monday

I’ve misplaced my cell phone.  We’ve gone around the house, calling it with Daniel’s phone, but no ringing.  The only place I could have left it was at Dana Farber infusion center yesterday where I got two units of blood. It was not turned in.  The reason we know it is really gone is that our phones always malfunction when I’m in the hospital. In 2002, we lost both our home phone (a wire was cut during the roof replacement) and Daniel’s cell phone. Is there something in phone gremlins that leads them to take away your phone just when you need it most?

I’ve order a replacement by express mail, but it won’t be here until Thursday afternoon. In the meantime, if you need to reach us, call Daniel’s phone at 650-248-9299.  I also have a Skype-In number, 617-381-4324.  I will keep a microphone on my computer to get calls on that Skype number through the weekend, but not after that.

We met with Dr. Stone today.  My blood counts have been going down since the last time we were there. We reviewed all the options open right now.  It was a good, frank conversation.

I decided with Daniel’s concurrence to continue to go for the cure. Stone believes I have about a 50% chance of going into remission with another round of high dose chemotherapy. We will use the combination of drugs that worked last time.  Because I have been weakened by the previous chemo, this round promises to be a rougher ride.  On the other hand, we have identified many drugs that I’m allergic to and have a stable set of antibiotics, anti-virals, and anti-fungals that are working for me.  I asked Dr. Stone frankly if he assesses that I’m strong enough for this second round, and he answered without question, “absolutely.”

I will enter the hospital Monday night the 29th; on Tuesday I have a date for installation of a new central line in my chest.

Daniel wants to take my black leather gliding chair to my hospital room.  I do get some leg exercise and all over body shaking when I’m it in. And it is a chair that I will get out of bed to sit in. So, if the room is big enough, he will cart it in.   We went up to the unit where I was before, hoping to see a nurse about holding one of the big rooms for me (so we can fit the chair). Daniel said as we got off the elevator: feels like home. Well, it is at least familiar.

The next few days I’ll be downloading more music and audio books. One of the prominent side effects of this drug combo is loss of coordination, so I don’t know how much I’ll be able to type and I fully expect to have a reading problem again.  I hope that I’ll be able to use the delicate control of the iPod.

Revised: phone problems

Here's an update to my post earlier in the day.  Daniel is my hero.  The local Sprint repair folks told him it was "impossible" to unlock the phone, but "impossible" is only a challenge for him.  He kept pressing them until they saw the challenge in it.  After about an hour they found the problem and got it fixed.  So, my phone is working now.  However, the Sprint insurance folks seem to be unable to stop their plan to activate another phone and send it to me on Tuesday.   I'm receiving phone calls now, but they may turn off this phone at any time.  ah well.

Here is the original message:

My replacement Sprint phone arrived but none of the passcodes they sent me will unlock the phone.  After thirty minutes of talking with Sprint's phone insurance company, neither Daniel nor I could get them to send it faster than "overnight" --which means Tuesday delivery.  Somehow their systems would not let them send with Saturday delivery since the first phone was not sent for Saturday delivery.  Daniel will take this phone to a Sprint store in hopes that they have magic to unlock it.  As for now, we have no clue now about when I'll have a phone.  I'll post in right hand column when I have it turned on.

It is a puzzle to me why I get more upset over the jerkyness of corporate behavior than I do my illness. 

Being Upright

This has been a good week of lessons and visits.  Daniel and I are both feeling prepared for my return to Dana-Farber. They are holding a larger room for me on the same floor where I was before. I am very tired most of the time and sense it is time to give chemo another try. 

Jennifer sent pictures of Zac and Lucas in their School’s Spring Presentations. Here is Lucas, not quite seven months old.  He was dressed for his first Spring Presentation in an Hawaiian Sea Gala.  Yes, the picture is a bit of a fake because the second after it was taken, Jen has to take his hand so that he wouldn’t fall.  This baby of course had no notion of standing up when we left North Carolina in March.  And now, his human instinct is calling him to be upright.  Our biology needs us to be upright.  I know that I’m facing many days when I will not want to move from a prone position, and that my biology needs to be upright. I’ll smile at this Lucas picture and haul myself out of bed.

Zac has now graduated from “Pre-K” and will be going to public kindergarten in the fall.  He told me that he wore a hat for graduation. He didn't like the graduation itself, but that he had fun at the ice cream party with his frinds afterward. 
Once when I was buying him books, he pointed to the “Pre-K” books as the ones which were right for him.  I asked him what Pre-K meant.  He said he didn’t know (though he was certain those were books designed for his age).   How often I know something fits me with little understanding of what it is. 

As Zac and I were talking on the phone this week about his graduation, I apologized for not being there, but asked him if he would come to my graduation in a couple of years.  He said he “probably could,” then asked what I will be graduating to (as he is graduating to kindergarten).

Zac and I talk about God when we are together, and it was tempting to say that I was graduating to help do God’s work.  I knew he’d ask me what was God’s work, and this could start a conversation too philosophical to have over a cell phone with a nearly five-year-old.  The question lingers with me: what is God’s work that I’m preparing to do.  Looking for a simple response, I told him that I would be graduating to “recess.”    He asked me what I do at recess.  I told him I swing and talk with my friends.  With words of utter disbelief he asked, “You swing?”  He knows when I’m fooling him, and was not going to take that as an answer.  And so, I told him that I “talk with my friends.”  He took that as an answer, but not a very satisfactory one.  And again I linger with the question what is recess for me?

This week I had lots of good visits and talking with my friends; I even got to go to visit a couple of friends who’ve recently purchased Gallo speakers like ours with Daniel’s help.  Berkeley Johnson came by with his banjo to bring me a serenade.


   

Deb, Ryan, and Jackson walked over on Sunday afternoon and surprised me when I got home from Church.  Jackson (whose not yet 18 months) is about the size of a three year old now and loves to chatter away.  He continues to be interested in music and headed behind the sofa where he knows we keep his piano.  He gave us all a rousing concert of Jack-music. 

In Hopital Again

I'm about to go down for the procedure to install a new central line.  I'll sleep after that.  More about the "move in" later

Gliding Today

Hospital life is going fine for me so far.  Yesterday I got two units of platelets and two units of red blood, bringing those counts higher than they have been since November.  I’m got the first of five chemo infusions last night (seven hours).   I was able to sleep right through it.  They gave me an infusion of anti-nausea medicine before the chemo and I’m finding I have both an appetite and a taste for food.  The docs took me off two antibiotics I’d been taking at home.  It could be that those were indeed the cause of the muscle pain and food aversion I’ve been experiencing. (They seem to like to have patients go without antibiotics until they get fevers and then add them.)

Having a bigger room away from the traffic of the nurse’s station is everything we’d hoped for.  I’m much more comfortable without the constant chatter outside my door.  I can even leave my door open and have a bit of a vista down a long hall.

Yes, indeed Daniel brought my black leather glider to my room.  Again, we set a first.  Nurses say they’ve seen “all kinds of things” brought in, but never a chair.  The chair is made by the Canadian company who makes the best “nursing gliders” for new mothers.  It moves gently back and forth giving me some action in my legs that keeps them from getting stiff.  I’m now out of bed much more than I was before.  It also gives Daniel a place to be comfortable when he visits so that he can stay longer.  When I glide in it, I get memories of the grandsons I’ve rocked to sleep in it.  Here is a picture of me taken in the chair at home last week.

Daniel and I have both succeeded in the transition of my being hospitalized even while being aware of the serious reason that I’m here.  We said prayers over the bag of chemo drugs before they hung it for infusion last night.  We are enjoying my good days and being grateful for advances in medical science and firmness in our faith.