Bonnie Recovery

Fever, Nightmares and the Good Dope.

Adult content.  Not for the squimish. 

Bonnie was doing well all day Friday.  She was up and talking with friends on the phone.  Some called to cheer lead Bonnie to eat, others just to catch up.  She did eat her eggs and toast and Ensure, despite some pains which she mitigated with good old Tylenol.  You go girl. 

Then she was not able to digest five ounces of a juice-based protein drink.   She started to have a stabbing pain in her chest.  She took some Tylenol.  We were safely in bed for the night by 8:30 PM.  At 9 PM she threw up the protein drink and some blood.  This exacerbated the searing pain in her esophagus.  A bit of cold milk followed by some liquid Tylenol seemed to quiet the pain.  By midnight it was clear she needed some real pain medication.  I searched for 24 hour pharmacies and drove off into the night to get her Ativan prescription for pain filled. 

Advent

I’m writing this while relaxing in the Dana Farber infusion center where I’m getting two units of blood. Tomorrow is the one year anniversary of the BLOG, and I intend to write a little retrospective. Today I’m thinking about the beginning of Advent, the Christian New Year and beginning of six months of holidays and other occasions when we remember the life of Jesus.

Last Sunday was the first Sunday of Advent; at EDS, Advent begins with a service of “Carrols and Stories” on Monday evening. I was determined to go to that service to mark my return to chapel after almost five months. Susan Langle came over Monday afternoon; I was too tired to help her make loaves of cinnamon bread in our kitchen. So I slept, and she baked . . . until four in the afternoon. She’s the czar of Monday afternoon services so she had to leave to prepare chapel and participants before I dragged myself out of bed. As determined as I was to go to the service, each minute I was deciding go or no-go. As usual, Daniel came to my rescue by offering to drive me and my walker to the chapel so that I had to walk only one way.

Daniel dropped me off on Brattle Street, only steps from the chapel. I walked up the ramp and opened the door just as the Bishop and the procession exited the vestibule. I was completely unprepared for what happened next. The music, the lights, the warmth of the chapel, the sight of so many friends (who had turned around to see the processional) hit me. I felt that it may have been Archangel Michael pushing me over with his wing. I grabbed for the seat on my walker with such force that two fingers and my wrist were swollen the next day. I could do nothing but sit there and cry, overwhelmed with gratitude to be back there and to be alive. God has never moved me gently, and this was no exception. As the music ended and the Dean offered the bidding prayer which opened the service, I just sat on my walker in the vestibule, crying with gratitude. Finally I was able to move into the chapel. All the seats were taken, but Susan had thoughtfully left a folding chair that I was able to put down a “safe distance” from anyone who might sneeze or breath on me.

Great News

We got the wonderful news we got from Dr. Cutler on Tuesday afternoon – my bone marrow is “beautiful”: no ugly blasts in the marrow! We feel once again that a miracle has blessed us. Even though we had been expecting a good report since hearing last week that the aspirate was clear, it was incredible to hear this from a doctor who was counseling me in early August that there was little hope that the bone marrow transplant would help me. He recommended proceeding only because there was nothing else that could be done medically. He was beaming at the results, and so were we. I continue to have some difficulty in making red blood which, Cutler says, is “normal” given what I’ve been through. 

Tuesday was indeed a great day for great news. Tuesday morning Jennifer called with the report on her “high definition ultra sound.” We have a completely healthy baby GIRL getting ready for delivery sometime around May 1. I haven’t heard what Zac had to say when they told him last night. Earlier he had suggested that he didn’t really think that they needed any baby girls, but that it would be ok if Mommy wanted one. We were all ready to celebrate a healthy baby boy if that is what the report show; yet, with three wonderful grandsons, we are ready for one girl. I’ve been thinking about how good it is to live in a country where the birth of girls is celebrated. Even in the twenty-first century, we have too many places where infant girls are given away (or worse). We are certainly going to celebrate the birth of our girl.

Two Pieces of Wonderful News.

We received two pieces of wonderful news yesterday. 

Bonnie's daughter will be delivering a daughter circa May. 

And for the first time in 5 years, the odds are in Bonnie’s favor to be here in May to hold Jennifer's baby and to be a full-on GrandBee for some years to come.

Yesterday the doctor said the biopsy of Bonnie's solid bone marrow core shows that her "bone marrow is beautiful."  There you have it folks, scientific confirmation that our Bonnie is beautiful to the core: beautiful being the original meaning of "bonnie".

Dr. Cutler added that her bone marrow is still slightly hypo-cellular and not yet making enough red blood.  Bonnie needed 2 units of red blood today.  But we are assured this will come along as the donor’s stem cells more fully occupy her bone marrow.  There is plenty of space for the donor's cells to move into since Bonnie's marrow was wiped out by three rounds of chemotherapy.

One Year of Blogging: Thank You

On Dec 7 2005, I wrote the first message of this blog, announcing that I’d had a relapse of leukemia. My first appointment with Dr. Stone had been earlier that week. He confirmed that my low blood counts did indeed indicate I was no longer in remission. From that first visit, he was talking about a bone marrow transplant for me. The first test of my HLA (skin) typing indicated that the search for a donor would be relatively easy. Daniel was persistent in getting the HLA type that Stanford had done in 2002. Oops, Stanford’s typing was different from the Dana Farber typing; the Stanford typing was the correct one and showed that I have a very rare type indeed, and not very likely to find a match. This was the first of many disappointments over the year. The mistake found with my record had a good result for others, however; it led Dana Farber to reexamine every sample with that common HLA they thought I had and to make sure they weren’t making the mistake with others. We were disappointed, yet gratified that we might help others. In all this process that I had a great ally: Deborah, the person searching the marrow databases, was DETERMINED to find a donor match or two baby cords. And indeed she was the first to argue with data that a man who was a near match was indeed a good enough match. The data for this conclusion was only being published for the first time in January and February 2006.

In retrospect, I was fortunate not to get a transplant in 2002; procedures and medications have improved dramatically since then. And they continue to improve, as on some schedule to help me. Tomorrow I’ll start to get a medication that can prevent me from getting graft-vs-host-disease, the #2 killer of BMT recipients (after failure to engraft). 

Thank you for your support through all the waiting, and all the early disappointments. Again and again, we were reporting on the BLOG that we were “still waiting.” When the “near enough match” donor was identified, I started chemotherapy. Yet after each chemo round, my bone marrow remained full of leukemia, and we continued to wait, and with your help, to hope.

Thank you for the support that encouraged us to have the transplant in August when the probability of success was so low. And thank you for your encouragement through the tough times this fall when I’ve not been able to eat or walk. Thank you for supporting Daniel, who has been stressed and stretched to the limit in all the uncertainty of this; he has needed to do so much, yet never felt he was doing enough. Your friendship is our miracle.

And how can one thank God for a miracle and friends whose prayers brought that miracle to you? Well, “killing the fatted calf” is one way; we found a modern interpretation. We have donated a calf through Heifer International in thanks to God and to you. You probably know that Heifer International gives livestock to families in 2/3rds world countries. 

For a musical announcement of the gift in your honor and more information about the gift of a cow, view your eCard, at
http://www.heifer.org/card2.asp?icard=lmIWJ7OSIgK1JnPVIaIWJjN5KjLYLiO1LxH   
My son, Ron Johnson, is actively training (like 5:30am) for a 100 mile bike ride to benefit the Leukemia and Lymphoma Foundation in the Solvang, CA in March. We are donating in your honor for that also.  I will be sending you more about that in next week’s post. 

Thanks to you for helping God pull me through these days of uncertainly and discouragement.

Much love to you all,

Bonnie for BanD

My Son's Ride to Benefit Leukemia Society

December 16 is birthday to a famous composer, a friend Ellen McCoy, and both my children. Today, the 18^th is my step-daughter Debrah and my fine grandson, Jackson’s birthday. [It is a cruel thing for any parent to do once – have a baby in late December. But to do it three times is near intolerable; even worst is passing along the nasty little habit to another generation. Please, and I speak from experience, watch those early spring cupid temptations lest you too end up with a baby (or more) whose birthday is too close to Christmas.]

I don’t often talk about my children in this blog. Their business is private. (Grandchildren are different.  Their job is to be cute by word and deed and to show us how to become human. Their innocence points to what is essential in developing from the angelhood they were born with to the personhood that will sustain their lifetime. As we approach the time of saying good-bye to being human, they help us understand why dying people say they wish they’d spent more time with their families and friends and less time at work. Being lovable is how they survive the day. It is no less true for us, but oh much less visible.)

Anyway, today’s post is about my son Ron Johnson. He is the oldest of our three children. When I was ill in 2002, he came to Palo Alto often, though sometimes I couldn’t remember that he came. He’s one of those dot-com start up guys whose job is totally time consuming. He also has a big two year old puppy who demands a lot of time. I was really surprised when he told me that he was joining Team in Training and would be riding a 100 mile Century for the Leukemia and Lymphoma Society in March.

 

Oceans and Love

We made it to the ocean by mid-afternoon and threw open the windows and listened to the waves and breathed the ocean air. 

Bonnie curled up in her bed, drinking in the sounds and smiling with deep pleasure - despite having trembling hands, arms and legs.  She is like a person with advanced Parkinson's Disease.   This has been going on for months, but now there are deeper involuntary convulsions of her abdominal muscles and legs.

The doctor continues to assure us that this is "simply a side effect" of Prograf which Bonnie needs to take to stave off Graft vs. Host Disease - and that this will cease when we discontinue the Prograf.  The other "simple" side effects of her medications are nausea and vomiting.  Or as Bonnie puts it, "discomforts of living."