Bonnie Recovery

It’s about time

Here I am checking in first with admitting, then into my room.  The first person who spoke with me (the one on the right) introduced herself as my day nurse ANGELICA.  Daniel and I knew we were in the right place when an Angel greeted us. My night R.N. on the left clued me in on LOTS of how to make it work for me.  I have more pictures of my room that I'll post later.

I’m settling in for the easy ride of my hospital stay.  I got my central line about this time yesterday (after waiting all day to be called—with no food or drink).  My time down in the “Intervention Radiology” O.R. was a bit like an episode of the moving/TV show MASH.  Everyone was in fine shape for kidding and jokes and I joined right in.  That was all before they gave me the “good stuff.”  I remember that the joking continued after my drugs started to work, but I’ve completely lost the details of what happened.  This “conscious sedation” stuff is a real time warp.  I could hear what was being said, but I couldn’t remember it from one moment to the next.  It was as if time collapsed so that everything happened within five seconds.  Daniel and I have been in many conversations ABOUT TIME recently.  I even got one of Brian Green’s books on CD to help me further explore the new scientific understandings of time. 

I feel that I’m living in a time warp. 

Hanging Around

Tonight I will finish the induction of chemotherapy.  At that point, I'm waiting for my counts to hit bottom because my bone marrow is demolished.  Then I'll be waiting (probably with some anxiety) for my system to restart.  I can tell now that I'm getting slower and slower at almost everything.  The doctor has a sheet of paper on which I sign my name every day as a test of my motor coordination.  I can still do that.  Mornings are much better for me than afternoons, and by evening I can't really think much.  An evening stroll around the lovely halls does perk me up a bit. 

I have a small altar area parallel to my bed on the left side. I have a Indian batik  with flamingos, a gift from Christopher Duraisingh to bring me good fortune.  I also have my grandchildren collage, twenty five pictures with the title, "And all the children are above average."  Staff people like to look at it and it gives me an opportunity to talk about loving and cheerful topics.

Susan came by today for a great chat. She practiced her homily for Sunday, a beautiful meditation about watching the events of Palm Sunday.  We had communion.  It was a fine way to end this week and prepare for the weekend that begins Holy Week.

Today is the "fourth month" anniversary of my first posting on Dec. 7th.

Dial up speeds

When one moves as slowly as I do these days, dial up speeds seem like lightening.  I finished my chemo infusion on Friday, and just as expected, my fever shot up on saturday.  It is down now, leaving me feeling as if I had a fever.  Yuch.  I'm just moving slowly, but in expected directions.  Love to you all, B.

Red Sox

Revised  4-12-06

Zachary at age one with Fred the Baseball Boy

Zac with his T-Ball team.

Yep, he is the one on his knees, ready to get back in that game.

What a difference 3.5 years can make!

These pictures of Zac are for me pictures of LIFE since first diagnosis.  In July 2002, my doctors tried to talk me into going immediately into the hospital for chemotherapy.  We said, "not yet" and headed for Zac's first birthday where we took this picture of him and Fred, the Baseball Boy that Mary Newman gave him.The second picture of our T-ball Player shows what he is like now.  A lot of life and love went into growing that boy, and Daniel and I along with his parents, grandparents, and friends, have enjoyed it all. 

When I look at the second picture I see how much he still has to grow and I'm more committed than ever to be there to cheer him, his brother, and his cousin on... along with who knows how many more young players that may show up in our future. 

Zac let me take Fred the Baseball Boy to the hospital in Stanford and let me bring him to Boston to keep me company while he can't be here. 

Jackson is already getting to know Fred.  Here he is taking Fred for a ride in my hospital room   

Yesterday the Friends of Dana Farber brought me a Red Sox cap, some cracker jacks and other reminders of the opening home season which started yesterday.

Fred is looking good today in his Red Sox hat.

I plan to take over the hat when I shave my head.

As you can see, I am feeling better after recovering from my 102 fever over the weekend.

Poem of the day:

If I didn’t have a building blocking the way,

I might be able to see Fenway.

It’s less than a mile from where I’m confined;

yet I’m here, not there; to this, I’m resigned.

Day in the Life

Some people have asked me what I do all day, and what I feel up to doing.  I thought you might enjoy a little picture tour of my day.

5am - Nurses draw blood samples from my central line, and the nurses' assistants take my "vital" signs (how vital could they be at 5am?).  Nurses unhook my lines

7am - Sun from my east facing window tells me it is time to wake up for morning prayers.  This time is for my primary Ignatius "kataphatic" meditation for the day (meaning an extended visualization in which I place myself in a bible story). I usually heat a cup of water for tea at the microwave down the hall.

8am - I start my BLOG entry for the day

8:30 - Hematology doctors stop in to check me out.

9am - Breakfast arrives; I'm usually well into writing something on the BLOG or for my online class and I get around to eating when I can take a break

10am - I'm hooked up for more medications. My daughter Debrah brings me Starbucks and some too tempting treat and we have coffee break together.

11am- EDS Friends come for chapel service in my room.  We have wonderful conversations and amazing liturgies.    Here are pictures from Maundy Thursday and Good Friday visits and liturgies.                

Healing slowly

I've slept most of Sunday, Monday, and today. I continue to have a very uncomfortable itch.   My body is healing; today I made the first neutrophils, just a few, but the beginning of rebuilding my immune system.   Stay tuned.    -B

Slow, Low Days for Bonnie

This is Daniel posting for Bonnie. 

These are the "slow, low days" for Bonnie. 

From a biological perspective:  Bonnie is running a fever of about 101.5  She has hives-like rashes on most of her skin.  Affected areas semi-heal in about one week after they break out, but they are replaced with fresh outbreaks on other parts of her body.  I think less than 20 percent of her skin has not yet been afflicted with livid, red, itchy rashes.  Bonnie requests and gets anti-itch medications but they are not particularly effective.  She wears socks on her hands at night so she does not scratch herself in her sleep.  She sleeps more than normal and is not up and walking the halls, and making herself green tea.

The good news, biologically, is that they removed her Hickman line which has been infected and causing a hot, red 6”x12” area on her chest for the last 16 days. 

50 new blood cells !!

This is Daniel posting for our bonnie Bonnie.

Bonnie spoke with her beloved grandson, Zachary, again last night.  As usual he first had to inquire whether Bonnie is STILL in the hospital, and how she is feeling, and does she hurt? 

WHAT are you DOING there? he asks.  Bonnie tells him she is resting up and sometimes she watches TV.  He can not imagine that she is watching cartoons.  He tries to figure out what an adult would watch.  Do you watch the News, Grandbee?  She says yes, the News and American Idol.  Oh, Mommy can I watch American Idol?   

Zachary is so attentive to his Grandbee and what she is doing it as if, by sheer duplication, he could magically arrive through the telephone line and sit on his Grandbee lap  and tickle her.  Of course he would claim to be "just checking her tummy for muffins" as they do, back and forth.

Only after sizing up his Grandbee will Zachary give Bonnie the news of his latest sports exploits.  He hit a tennis ball so hard that it went over the tall fence and into the swimming pool.   He also proudly reported that his baby brother had a good time yesterday at his other Grammy's house. 

Bonnie listens with perfect attention to her grandchildren.  It is as if she learning how to be a newborn and divide cells like a child, by tuning in to their very vibrations. 

This morning it appears she has done just that...

Which Truth will prove true?

This is Daniel posting for Bonnie. 

So here is the Truth about Bonnie's medical condition. 

The question is whose Truth, will prove to be true? 

By all outward indicators Bonnie is on the mend.  She is getting quicker and funnier by the day.  She is making more blood cells.  Her blood tests show she is  getting close to low normal on all counts, except her critical white blood counts.    Even her doctors observe aloud that Bonnie looks like a person who is going into remission. 

On the other hand, there is one bad indicator;  Her daily blood tests show 10-19% blasts in her peripheral blood. This can be an indicator Bonnie is relapsing into Leukemia. 

Do we believe her spirit and our eyes - or the microscopic medical evidence?   

Is Bonnie going into remission - or relapsing? 

Bonnie cried a lot yesterday, between entertaining guests.   

Bonnie says she is living in the question, "Am I living or am I now beginning to really die?"   

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)?

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

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 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.

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.

Romantic evening by the light of...

Bonnie and I had a romantic evening by the light of ...
the infusion machine.

We sat in the dark together.  The main feature in the dark was a fancy chrome pole on casters crowned with four hooks, each hung with different size bags of anti-biotics, anti-nausea drugs, and a succession of 3 different chemo drugs.  The pole has a computerized pair of pumps and LCD screen and status lights.  It looks like the displays in the pilot house on a small yacht.

We sat in the dark and enjoyed each other's company ...

Getting Slower

I’ve been in the hospital a week now. Last night was the last of my six days of chemotherapy infusion. Recall that with “induction chemotherapy” the goal is to give high doses of chemo fast to knock out ones “fast growing cells” as rapidly as possible. I will be staying here for some weeks because this process knocks my immune system and so they keep me here so that they can attack any bacteria or fungal infection quickly. I’ve not had any fever.

Over the weekend I mostly slept. The nurses have me sign my name every day and also do some coordination exercises to test my cognition. So far I’m passing those tests.

The area around my central line is quite red and painful; if that doesn’t improve by tomorrow, they will take out the central line. This means they will be inserting and removing new infusion lines into my hands and arms every four days, and sticking me to take blood once or twice a day, yuch.  What I most wanted to have a comfortable stay here was to have a good central line. I’m trying not to be discouraged about the prospect of losing the line.

Daniel comes to the hospital a couple of times a day. We had a “movie night” on Saturday. Yesterday he kept Jackson in the evening and came by afterward to tell me stories of Jackson’s latest achievements. I have some great pictures of Zac catching his first fish of the season.

I enjoy Eucharist often. Mary Wenzle, who visited me often in April, has been in the hospital getting a new knee. She is now in rehab and I hear that she is recovering well. Sue Cronmelin is doing the required hospital chaplaincy training in the northern suburbs of Boston; with travel that is a 12 hour day. Still, Sue comes to see me on weekends. Susan Langle brought Eucharist today. Besides the spiritual uplift, Susan can get me engaged in the events of next week’s Episcopal General Convention. We are hoping for a Convention that focuses on the important peace and justice issues of God’s work and is not too distracted by right wing attempts to make political capital out of the event.

I feel weaker all the time and expect that I will be spending many days asleep in the next couple of weeks. The anti-nausea medicine I’m getting isn’t working as well as before. I hope that this is because the chemo drugs are actually working better this time. This isn’t a cheery post. I’m taking the bad with the good. So far, apart from sleeping and nausea, the good has dominated my time here. I’m grateful not to have sickness distract me from prayer time.