Monday, November 28, 2011

Thanks

Dinner on the barge in Southern France

Thanks     
by W. S. Merwin

Listen
with the night falling we are saying thank you
we are stopping on the bridges to bow from the railings
we are running out of the glass rooms
with our mouths full of food to look at the sky
and say thank you
we are standing by the water thanking it
smiling by the windows looking out
in our directions

back from a series of hospitals back from a mugging
after funerals we are saying thank you
after the news of the dead
whether or not we knew them we are saying thank you

over telephones we are saying thank you
in doorways and in the backs of cars and in elevators
remembering wars and the police at the door
and the beatings on stairs we are saying thank you
in the banks we are saying thank you
in the faces of the officials and the rich
and of all who will never change
we go on saying thank you thank you

with the animals dying around us
our lost feelings we are saying thank you
with the forests falling faster than the minutes
of our lives we are saying thank you
with the words going out like cells of a brain
with the cities growing over us
we are saying thank you faster and faster
with nobody listening we are saying thank you
we are saying thank you and waving
dark though it is

Thanks to our friend, Pat Eldred, for sending the poem. We have returned to Mayo and Jud is going through a series of tests for final qualification for the clinical trial.

We are so grateful this season for all that our wonderful friends have done for us. I am especially grateful for my blog friends...my connection to love and comfort when I am alone, when I awake in the night, when I am not feeling well.

I am "saying thank you and waving" to all of you.

Thank you.

Sunday, November 13, 2011

...and how was Mayo?

I must tell you, Mayo was kind of a bust. As is usual at Mayo, we were scheduled early in the morning for a blood draw. (I am so aware of my use of "we." I originally put "draws," as if I had one, too! I feel so connected to Jud in this almost symbitic process). I am fine with the early morning tests and understand that it would help the doctor know how you were doing right away. At 10:30, Jud had x-rays. Then the long wait. We were supposed to see our (!) new doctor at 2:30. We were put in a room and a nice young research assistant came and signed Jud up for another study, a bank of people with pancreatic cancer. Good idea.

We waited and we waited. No one came into see us and tell us what was going on as we sat in the "little white box," both feeling quite anxious. So much depended on this. Finally, two hours later, the doctor arrived. He was handsome and dressed beautifully. However, there was no apology or explanation for being late. We would have understood if he had an emergency or another patient who took more time. He shook Jud's hand. He ignored me. I practically grabbed his hand from his side and shook his.

He scolded Jud for not having all of his materials there. Jud had made a special trip to his office in doctor in Minneapolis and hand carried it all in. It was all there. He knew little to nothing about the protocol of the study Jud was interested in. "She" will tell you, he said. "She" was the research coordinator. "She" didn't have a name. 

He was very negative that anything would help Jud. The longest anyone had stayed on this drug was four months. They had to stop because the cancer progressed or because the side effects were too great. He was very cold and negative about the whole affair. We could accept that this combination of medications could have little value, but please, please, just tell us in a kind way!
Finally the research coordinator came in. She was harried-looking but reasonably nice. Dr. S. left in a hurry, shaking Jud's hand. He tried to pass me and I again grabbed his hand. He refused to look at me.

Jud was accepted into the study ("It is your only alternative" said the doctor.) We will go back after Thanksgiving for four days. 

Jud went home and, after a little thought, he called the research coordinator and asked to fire the doctor. No one with a serious illness deserves to be treated this way.

Interestingly, this is our second rude doctor. Our first was at Stanford. When I read one of the Steve Job's eulogies, I discovered that he was his doctor, too.  I'll bet he was nice to Steve1 Our main doctor at Stanford, Dr. Albert Keung, was one of the kindest doctors I have ever met. 

 The Brothers Mayo

As we left Stanford, De. Keung said to Jud, "I will always be your doctor. You will always be my patient. Please call me at any time."

As it should be.

P.S. As is true of all major medical centers, members of my family have also had wonderful care at Mayo Clinic in my family. My brother was treated with such caring when he had esophageal cancer and today is cancer-free.


Wednesday, November 9, 2011

...and how is Jud?

We drove to Rochester last night, home of the WFMC, as it is known to the locals... the World Famous Mayo Clinic


This picture was taken several weeks before Jud was diagnosed with Pancreatic Cancer. We were both in good shape, having just lost weight on the South Beach diet. We felt very carefree as we went to a benefot for Jud's clinic. Several days laterm I attended my beloved Silver Bella, Five days after I returned, Jud was diagnosed with Stage Four pancreatic cancer.

Jud's current chemo quit working about the time we returned from our wonderful barge trip to Southern France. We are at the point that there is no known treatment that he hasn't usedand we have entered the world of clinical trials. We are here to see if Jud is appropriate for a clinical trial thst combines the hedgehog pathway inhibitor and a known chemotherapy, Tarceva. The hedgehog trial treatment tries to interrupt the pathway of the DNA that the cancer needs to grow. Nothing to do with cute little hedgehogs. It has shown some promise and we are hoping they will find him an appropriate candidate.

This isn't the first time we have entered the world of clinical trials. Jud received SGRT (specific guided radiation treatment) at Stanford. We are so grateful for that treatment, in which the doctor radiated the area around the pancreas. Even though it did not stop the ptogression of his disease, he has had a much easier go of it, including less nausea, less weight loss and less pain than PC patients who have not received this treatment. We have been extremely grateful for this quality of life issue.

We will meet with the oncologist this afternoon and we will know more. On Saturday, we are on the road again, heading to a small town outside Washington, DC.  Jud is teaching at a conference that concerns integrity in medicine. We weren't sure he would make it but he is so glad to be able to participate as this is an rea that means a lot to him. I am taking a suitcase of craft materials and working on Christmas presents. Sounds like a grand time for both of us.

Please keep us in your thoughts and prayers and we decided which medical pathway would be best for Jud.

P.S. There are more trip pictures to come!





Sunday, November 6, 2011