Bonnie Recovery

On the Road

We spent a fine week+ with Daniel’s Mom, Sis and Brother-in-law with a side trip to Madison WI to visit with Margaret and Paul Irwin (Margaret was the rector of our Palo Alto parish).

In St. Louis we saw my cousin and his family and had a visit with my bone marrow donor and his family that was too important to talk about briefly here.

We are headed to Austin where we expect the remains of a hurricane will keep us in our hotel room tomorrow and give  us the time to do a proper posting. We are now rested from our packing out efforts and not too road weary.

The trip is proving to be the time of spiritual transition we were hoping for as we move to our new residence and life.

Today is Zachary's seventh birthday. We are celebrating our boy and also the time his birthday gave me a new outlook on life.

Much love, Bonnie for BanD

Great Trip Continued

Today is our southern swing, leaving New Orleans around noon and hoping to make it as far as Atlanta before we stop for the night.  This has been the spiritual journey we’d hoped for between our Cambridge and our NC lives.  When Daniel first told me he wanted to leave Boston in the middle of July and travel for some weeks before our move into the NC house, I thought he was crazy.  How would we ever get packed and out of our apartment before the deadline EDS had set for us.  I wasn’t sure how we’d get packed by August 1 much less weeks before that.  But I was ready to go along with the joke and schedule as if we could do it.  I’m very glad we are doing this.

After a rocky start to the trip, getting out of Boston hours after we planned, we have pretty much been on time since.  After visits with the Bensons in State College, PA and the folks at Wadia in Ann Arbor, we settled in for almost eleven days with Bev and Alan, Daniel’s sis and brother in law.  We saw Daniel’s Mom every day.  Margery, Bev, and Alan have been so loyal to us during my years of illness.  Mom and Bev came twice a year to see us and called almost every day, helping to keep us buoyant. I can’t say strongly enough how gratifying it was to be able to be THERE for a change.  Daniel’s Mom was smart to move herself into a continuous care facility six years ago (I was in the hospital with my first round of chemo).  She is a star of that community, hosting a community meeting called “Someone you should know” that introduces new residents.  It is fun to meet her friends.  I tease her that she “lives in a Hyatt Hotel”; a couple of weeks after she moved in, commented on the luxurious dinner service and told her children, “Grandmom eats like this every day.”  We didn’t get to eat in the fanciest dinning room because Daniel hadn’t brought a sports jacket or suit, but we ate several times in the “Grill” (he had brought his long pants).  When I’m 87, I hope to have an onsite gym and exercise pool and six course dinners.  Mostly, I hope to have as many friends as Mom does and to be as appreciated as much as she is.

You may be interested in some of the commerce of our trip.  Yesterday taking Interstate 10 out of Baytown (where the Exxon refinery is), we saw gas at $3.39 (We’d just filled up at $3.41.)  This price is a full dollar lower than we’d see in Chicago where gas ranged from $4.20 to $4.39.  The difference in price is partially location and partially that gas has gone down.  When figuring out what this 4K mile trip was likely to cost us, I estimated $4.10.  We’ve only paid more than that once.  In the south we are generally paying $3.69.  The best purchase sI made for the trip were sun block shirts.  In June I got a bad sunburn when I put #50 block on parts of me not covered by my tee shirt. The shirt was not good enough to protect me from the NC sun while I watched Zac play baseball at noon.  The burn set off my current round of graft-vs-host disease.  I can’t recall a problem with sun last summer, though I’ve always been careful to stay out of the hottest part of the day.  I ordered shirts and pants from both Travel Smith and a place called Coolibar.  The Travel Smith clothes are my favorite; although both are 100% nylon, the TS clothes feel more like cotton.  The Collibar clothes rate 70 spf. I bought a nice little hoodie from Collibar that is ultra lightweight and easy to wear in the sun and in too cooled air conditioned places.  I may never buy regular shirts again.  These are just too comfortable, look great, and release my inevitable blood stains remarkably well.

A highlight of our spiritual journey was meeting Jay, my bone marrow donor and his family in St. Louis.  Since our early trip planning, we had intended to drive through Chicago to see my cousin Haley and his wife Gayle.  WE were delighted to learn that Jay lives near St. Louis, right on our path.  Neither Daniel nor I have been surprised that my graft-vs.-host had improved some since we saw Jay and were adopted into his big, wonderful family.  We expected that if my body can understand that Jay’s DNA is friendly, some of the warring going on at my sub-cellular level would subside.  And it has.(Note the family resenblance,  Sorry that I can't seem to resize these pics larger or smaller!)

I’ve written briefly about Jay before.  His father, who would be two years older than me, died of the same leukemia that I have in 1984.  If he had been able to live one more day he would have received a bone marrow transplant from his brother.  Transplants were primitive in 1984.  The only approach was a fully “oblative” one, meaning that with chemo and radiation, the docs demolished the patient’s immune system.  This left Jay’s dad without any defenses and he died quickly of an infection.  When Jay learned that my transplant was postponed from the original May 2006 date, he feared that I had an infection, and had possibly died.  As I recall, the reason for postponing was that my first round of chemo didn’t do any good at reducing the level of leukemia in my marrow.  My docs were hoping that a second round would have some impact.  It didn’t.  We decided to go ahead with the transplant in August of 2006 anyway, though the prognosis for people whose marrow had over 60% leukemia cells was poor.  The bright spot was that I had few of any kind of cell; I was “hypo-cellular” with a small fraction of what I person of my age would normally have.  It worked.  I had plenty of space for Jay’s young cells to move into my marrow and take over. 

Jay has an amazing family.  A year before his Dad’s death, his mom was in a fire that left her with third degree burns over most of her body.  Just as she was beginning to function, her husband was diagnosed with leukemia.  They had five children ranging from teenagers to a three year old.  I can’t imagine what they must have gone through.  They were sustained by Jay’s grandparents and their faith in God.  It was wonderful to be in the company of people who are so spiritual.  Jay’s grandmother has beautiful contemporary religious art in her home, made for her by a priest.  Some of the artwork is gathered into a chapel in their home where we sat on a pew from an Ignatius chapel and thanked God for Jay and his family.  Jay’s grandfather was named Noah.  Jay’s mom wrote him a poem thanking him for being their Noah, who built them and ark and too care of them when the storms came.  The poem, an ark and a large set of animals, including a pair of pewter Clydesdale horses (they are from St. Louis).  I went speechless seeing it.

Daniel and I felt entirely welcomed into their family.  We were with four generations of the Nies family, from Jay’s grandmother to seven of his nieces and nephews.  By the end of the afternoon I was almost completely silent; I was just too overwhelmed to say much of anything.  Daniel did a little better and so we weren’t too rude; I let him do our talking.  It was very tempting to take Jay’s grandmother up on her invitation to spend the night.  But we had stops ahead on our spiritual journey, and I was frankly just too emotional to stay more.  The faith of this family was so inspiring to both Daniel and me.  We thought of the many times we prayed for Jay without knowing his name, and they prayer for a 62 year old woman they knew nothing more about.  It’s good that God knows names and addresses.  I thought the greatest gift I could get was Jay’s act of unselfishness in agreeing to be a donor with all the injections and “harvesting” that was a part of that decision.  Now I know that an even greater gift is the gift of spirit we got from all of them.  Their faith in God and gratefulness for all they have are inspiring.

Somehow we managed to drive out of St. Louis, heading for Austin TX.  Within an hour of driving, Daniel found a sign that advertised the best BBQ in the Ozarks.  It was time to begin the barbeque part of our trip.  We pulled onto old highway 66 and immediately began to sing.  The barbeque was pretty good and very plentiful.  I had my first cobbler.  The apple cobbler was served on a hot skillet with two big scoopes of icecream. I’m reluctant to make pies because my crust never compares to my moms; I’ve decided that can do cobbler because the crust isn’t as fussy.  It became clear that evening that in the Midwest cobbler and BBQ go together.  (Oh cholesterol!)

All for now,  Coming next in this report: what we learned about Texas BBQ and pie; Austin visits wirh friends.

B for BanD 

Arrival note

Zac and Luc on the ferry coming to the beach.   

First sunset as Oak Island residents.  This picture taken from the ferry as we brought the boys for a week at the beach.

We arrived Saturday evening after a visit with Betsy Hall in SC where she is doing counseling work with Army families.  Daniel brought up most of the stuff from the car; I collapsed in bed.  I went to St. Philips church on Sunday am, then we headed on the ferry for the Pollards.  We have the boys at the beach until Thursday.  I probably won't have time to do much of a posting while they are here.  On Friday I see a dentist and on Monday we drive to Durham for my first visit with a transplant doc at Duke.  My mouth is very miserable. oh well.  We are having a great time with the boys. 

Love to you all,

Bonnie for BanD

Dentist Anxieties; Beach Relief

I’m writing this while waiting for a ferry to take Zac and me across the river and on to my first appointment with a Southport dentist.  I am looking FORWARD to the dentist visit even though I know it is the start of a long, painful, and expensive process.  I’m expecting to lose most of my teeth; in many ways this is the most dreaded of all the prospects I’ve had in this illness.  I’ve written before of how Mom persisted until she found a dentist who would pull all her teeth and make her a “beautiful” set of false teeth.  It was a decision she always regretted.  She spoke of it often; it was one a key stories I was steeped in as a young adult.  I was fortunate to get a good set of teeth and gums, unlike my sister who had to wear braces and eventually dentures.  I took good care of my good teeth and expected them to last as long as I was.  My graft-vs.-host problems literally rotted my teeth in the few months between February and June of this year.

So why am I happy to be seeing a dentist?  In reading professional papers I got from the Boston dentist who is a bone marrow transplant specialist I am reminded of what danger I may have been in for the last month or so.  The articles are quite explicit about the mortality prospects associated with dental decay for us transplant survivors.  Of course I knew that our three week Midwest sojourn was risky.  Somehow reading about others’ deaths from tooth decay brought home the reality of my situation.  And yet I would make the same decision about our Midwest visits if I had to do it again today.  I have consistently made the decision to live my life walking the tightrope rather than letting my agenda be dictated strictly by medical procedures and probabilities.  Each summer I am reminded of July 2002 when I chose to come to Zac’s first birthday rather than entering the hospital on August 1  

Update after NC doctor’s appointment

This posting is a brief update about my first appointment with Dr. Nelson Chao, chief of Duke’s transplant unit, and also our “move in” activities.

Both Daniel and are impressed with Dr. Chao; he has an open countenance and is obviously very experienced with transplants.  His approach is to keep survivors on a good dosage of prednisone for several years or until they no longer have Graft-vs.-Host Disease.  He finds that it is better to keep a level dose than to lower and then have to raise the dose.  Taking the drug every other day seems to eliminate much of the bone and muscle related side effects.  I am now taking 80 mg every other day.  Initially I’m taking 30mg on the alternative days, but that will go to 0 over five weeks.  He also upped my dosage of Cellcept, the other anti-GVHD drug I’m on.  He gave me a mouth paste to help my mouth sores.  It is an unpleasant paste just as the doc warned, but it does provide some pain relief.  I still plan to see my Boston doc in October, but we believe we will move to Dr. Chao exclusively over the year.  The main reason we go to Boston other than to see Debrah & Jackson and our NE friends is to see my eye docs.  I’m still hoping to get that corneal transplant and cataract operation from Dr. Colby next summer.

Dr. Chao was very reassuring about my prognosis.  He observed that my GVHD skin is mostly dried and gone.  His most reassuring comment was that 85% of survivors move beyond GVHD.  “One day,” he said, “you will wake up and feel well, and you will be.  We don’t understand how that happens and we can’t predict when it will happen, but it does happen.”  We are looking forward to that.  In the meantime, I’m mostly comfortable though I am taking more narcotic than in any the six years of this illness.

We have the house ready for the “early POD” to be delivered on Friday and unpacked on Saturday.  I did move-in instructions with PowerPoint drawings of each room showing what goes OUT (mostly to go to Jen’s house when her remodel is complete) and what goes IN.  We have all the Jennifer-bound furniture ready to go out and will have big spaces in three rooms to put the huge pile of boxes in that first POD.  Since we haven’t heard to the contrary from the POD company, we are assuming that this time we aren’t losing all our stuff to fire.  I have to say it was easier to move into the Cambridge apartment since we didn’t have to figure out what went where.  I’m eager to get our furniture and stuff in here; Daniel is not happy that we will be living with a move-in mess.  I think that my plans and clearing spaces has reassured him that we can get moved in with minimal disturbance.  Many of you have made moves recently; I don’t have to tell you about the mess!

Daniel did an excellent job of getting the town of Oak Island to repair the parking spaces they destroyed when they dug for our new sewer.  As he was doing his “Daniel thing” talking with the city official and showing him the dug up parking spaces, the two of them cooked up a collaboration that will put 25 tons of sand around our house.  We had been looking at spending a thousand bucks on sand to make our house more hurricane-safe.  Daniel got our neighbors on board with buying sand for their lots too.  Now the city will be getting rid of sand they have to move anyway while we and our neighbors get safer, sandier yards.  Leave it to Daniel to smooze up such good results.

We are loving it here at the beach.  Tomorrow I have a meeting at my new church with Rev Barry and then take the ferry to Jen’s to keep Abi and Luc whose day care is closed for a teachers’ day.  Zac has started the second grade.  Time flies . . .

Love to you,

Bonnie for BandD

Happy Re-Birthday - 2 years Post Stem-Cell Transplant

The first piece of furniture I had moved into the house was Bonnie's black leather glider chair.  We bought this chair so Bonnie could rock our Grandson Jackson in her arms.  I put this black leather chair on Brigham and Womens  Hospital's brass hotel-cart and dragged it into each of Bonnie's long-term stay hospital rooms.  That leather chair helped seduce her to get out of bed to prevent bedsores, and to exercise her legs and heart by rocking and gliding. 

I watched Bonnie sit in her chair yesterday.  She quietly surveyed the living room and the ocean beyond.  After a while she said "This is beginning to feel like home." 

And today we celebrated Bonnie's Happy Re-Birthday. 

Two years ago Bonnie was praying over the precious intravenous bag of pink stem cells she received from unknown donor.  He gave stem cells from his Bone Marrow, specifically for Bonnie.  Yet, for 16 months we did not know who he was or where he lived.  And he did he not know if Bonnie had survived.   

When Bonnie did the Saint Ignatius exercises during her first rounds of Chemotherapy in 2002, she came to a week of exercises on "Coming to Love" - the point of which is NOT to gain God's love, or to learn how to love God, but instead the focus of the exercises is to come to Love, as God Loves.  Ignatius reminds us. "Love is in actions, not words."  Bonnie's donor's gift from the core of his bones, was just such a mysterious gift of love.   

And so two years ago Bonnie sailed forth, praying her unknown donor's stem cells could do what 4 rounds of the most intensive Chemotherapy had failed to do --> Destroy the Leukemic cells in her bone marrow - and allow her to literally "be Reborn in the Blood".   

We now know and love Jay and his family.  More on Jay and his family in another post.   Jay's stem cells and prayers and his family's prayers and the prayers of our family and friends have worked a miracle - or as medical science prefers: "statistically, a highly improbable occurrence". 

Last week we read Dr. Cutler's report from 2 years ago.  He wrote that he told Bonnie that she had about a 10% chance of the graft taking hold.  We knew that even if the graft took hold, most papers show that only 50 percent of Bone Marrow Transplant recipients survive the first two years.  Clearly the odds of celebrating a Happy 2nd Re-Birthday were very slim, indeed.