Saturday, January 28, 2012

News about Jud...





We talked to Jud's doctor yesterday. Melissa had consulted with another physician and they did not see any blockage. Their conclusion was that the elevation in Jud's tests were from an increase in the cancer itself. We discussed all the options. There are no other clinical trials Jud would qualify and no other chemo agents that would be of help.

We had a wonderful meeting with our minister, Cathie Crooks, later in the day. We both just love her. She is such a special person and always makes us feel more at peace.

Jud and I made the decision (with his doctor's approval) that we would take a week's trip to Mesa then return and engage the services of home hospice. They will begin by giving us minimal service then continue to increase it as Jud needs more help. He is still up and about and still eating, though he feels what he can only describe as "malaise" and is not really hungry.

We are wrapped in our love and that, and our faith in an afterlife, continues to sustain us. The love and caring of our friends, as always, holds us in a circle of warmth and caring. We are deeply sad but we are also at peace.

I would like to thank all of you for your support of me. Some of you are friends from Silver Bella, some are internet friends. You all have been wonderful and have been so helpful to me.

Now, as always, "the greatest of these is love."

Tuesday, January 24, 2012

We need courage...we need it now!

Split Rock Light House. Lake Superior, MN


I am sitting in the Chicago Airport with only about ten minutes to spare so I am going to copy Jud's Caring Bridge site for yesterday so I may get this news to you more quickly.

We would especially appreciate your prayers and good thoughts at this time.

With love,
Sue

Dear Ones,

What a difference a year can make!  This time last year I was at Stanford getting radiation therapy for Stage 3 pancreatic cancer that was deemed inoperable.   We were brimming with hope that this might lead to the possibility of surgically removing the tumor.  Two months later in March we got the news that my tumor had spread to the liver.  The focus since then has been trying to find a chemotherapy that would at least slow tumor progression if not halt it.  I am most grateful that during this year I have tolerated chemotherapy reasonably well and generally felt reasonably good with no significant pain.

As you know, I stopped the chemotherapy clinical trial at Mayo 3 weeks ago because I was continuing to have disease progression.  It just wasn’t working.  Today I had my consultation at Johns Hopkins.  At the end of the appointment, it looked like I could be a candidate for a pancreas cancer vaccine.  We were happy to have one more option.  In preparation for starting that in a week or two, they drew some liver function blood tests.

This afternoon, Dr Le called to tell me that my liver function tests were significantly elevated most likely due to growth of the tumor.  The degree of elevation would eliminate me from the vaccine trial.  For that matter, it would preclude any other trials.  The elevation is either due to the total tumor burden (Isn’t that a quaint medical way of talking about the amount of tumor you have?  And, yes, it is definitely a burden!)  or there could be a blockage in the biliary ducts.  We talked to my Park Nicollet oncologist, Dr. Sherman, who recommended getting a CT scan to look for a blockage.   If there is one, it is possible that it could be stented with a metal tube.  That could reverse the liver function test elevations.  It would also make me more comfortable and provide for a little longer survival.   It is somewhat of a long shot but well worth doing.

My body in the past few weeks has been telling me that something has been wrong.  I used to be able to blame chemo for any symptoms I had.  That was nice because I could justify and tolerate the discomfort knowing that it was for the purpose of treating the cancer. Now, off chemo, it is the cancer itself that has caused me to feel ill.  I told Sue that if I didn’t know that I had cancer, I would have been going to my doctor and telling her that something is really wrong with me.  It is not necessarily specific.  I have felt very weary.  I sleep a lot.  Food does not look appealing.  It’s not that I am nauseated though I occasionally am.  I just have no appetite.  I am having intermittent pain under my rib cage when I breathe.  This is probably due to the tumor irritating the capsule of the liver right under the diaphragm.

The day has been a roller coaster with plenty of tears.  Instead of heading to sunny Arizona tomorrow, we will be going back to Minnesota.  We will reschedule time with my family in sunshine and warmth later.

Thanks for the continuing love, support and acts of kindness!

Love,

Jud

Thursday, January 5, 2012

New Year...New Word


Last year, my word was "Hope." I bought a necklace that said "Hope" and wore it all year. At Christmas, Jud gave me the cutest necklace that said, "Hope floats" and I have added that to my bejeweled neck.

This year, my word is going to be "Courage." I think this year is going to require more of me, as Jud's illness progresses. We are in Rochester right now and Jud is going through a series of tests. Tomorrow we will meet with another doctor (our third here...UGH!). We have been told by the dear Melissa, his oncologist at home, that Dr. Rubin is kind and skilled. We really need "kind" right now. We are quite sure the scans aren't going to look good since the cancer blood test (tumor marker) indicated an increase in tumor activity.

I ordered a great necklace from Beth Quinn...so now I will have three necklaces that are my talismans for the year. It is one of those terrific ones with the glitter inside! They are nice to touch in weak moments!

I will write as we know more, but will end with another one of my favorites. Such a lovely version, I think!



P.S. Now that I haven't totally screwed things up, I would like to thank Susie at Vintage Susie and Wings for my new look. I wanted more room but had a hard time giving up my beautiful Van Gogh borders. At the same time, I wanted room for larger pictures. She gave me a new look with the lovely lotuses at the side. She is so talented and she is a wonderful person to work with and know. Thank you, dear Susie. Her logo is at the right side, if you are interested in her services!

Monday, January 2, 2012

Our Christmas...

An ornament from our tree...which contains the stories of our life


The Reaney Christmas was wonderful and painful. The four of us (Jud, Kat, her boyfriend, Ashton and myself) had a very nice time.


Katie pretending she is meeting Iver, whom she knew since she was born.

It was colored with sadness, as our dear friend, Iver, died on Christmas Eve Day. Iver has had multiple myeloma for six years and lived an incredible life. It was only months ago that he was active and I mean active. He and Di hiked, biked and spent hours a day, working in their organic garden. Iver went through many difficult treatments to live a full life as long as he could...including two autologous stem cell transplants (his own cells). We will miss him so much.

Jud got news that his tumor marker test had again shot up. Way up. We will be leaving the Mayo clinical study and going to Johns Hopkins to consult about another trial which involves the cancer vaccine.

Joy and sorrow seem like unlikely companions but they dwelt side by side at our house. We had a lovely prime rib dinner with Megan, Iver's daughter; Drew, her significant other; and Dregan; their magical baby.

Jud got sick during the weekend and was unable to keep food down. We were all concerned that this was part of his cancer but it has passed and seems to have been the flu.

Jud and I have both read a wonderful book during this month. I have about twenty pages to go and don't want it to end.

A really terrific book

I really encourage anyone who loves fantasy, mystery and total escapism to read it! The word-pictures are fantastic and I feel like I know the characters intimately.


Katie and Ashton, world travelers


Katie and Ashton are in South Africa! Ashton's cousin is getting married there and his whole family is attending. They were nice enough to include Katie. We can't wait to hear the stories they will bring back. After the wedding, they have plans to stay at a game preserve. If I weren't so happy for both of them, I would be jealous!

I hope you all are enjoying this quieter time since the holidays. I am sitting by the fire with my new electric fleece warming blanket, a gift from my dear in-laws.  I send you all lots of love and thanks for supporting me during a very difficult year. Your kindness has helped carry me and I am so grateful.

Wednesday, December 21, 2011

If You Want...







Several years ago, Jud and I took training to become non-denominational Spiritual Directors. It was a wonderful experience. We met a weekend each month for two years and our class was full of diversity in religion and, well, not men exactly. There were two, one male leader and a whole lot of wonderful women.







At this time,  I found a "don't miss" retreat concerning using the arts in spiritual direction and traveled to a beautiful retreat center on the ocean shore of Washington state, where we studied, prayed and played for a week. The leaders, Christine Valters Paintner and Betsy Beckman were terrific and now have written several books. Christine also has a blog and, this morning, I was again reminded of this poem.





  1. If You Want

    If
    you want,
    the Virgin will come walking down the road
    pregnant with the holy,
    and say…
    “I need shelter for the night, please take me inside your heart,
    My time is so close.”
    Then, under the roof of your soul, you will witness the sublime
    intimacy, the divine, the Christ
    taking birth
    forever,
    as she grasps your hand for help, for each of us
    is the midwife of God, each of us.
    Yes, there, under the dome of your being does Creation
    come into existence eternally, through your woman, dear pilgrim –
    the sacred womb of your soul,
    As God grasps our arm for help’ for each of us is
    His beloved servant
    never far.
    If you want, the Virgin will come walking
    Down the street pregnant
    With light and
    …sing. 

    -St. John of the Cross from Love Poems to God translated by Daniel Ladinsky



My final words to you...may you, whatever faith or belief you hold, give birth to whatever is sacred in your heart.

And thank you, during this terrible and wonderful time, for surrounding me with caring and hope.

P.S. I do have a pretty new "face"  on my blog. More about that very soon. I can't seem to get rid of the yellow. Susie Hibdon to the rescue!!!

Monday, December 5, 2011

Let it Be



 Let It Be

Writer: LENNON, JOHN / MCCARTNEY, PAUL

When I find myself in times of trouble, Mother Mary comes to me
Speaking words of wisdom, let it be
And in my hour of darkness she is standing right in front of me
Speaking words of wisdom, let it be
Let it be, let it be, let it be, let it be 
Whisper words of wisdom, let it be


And when the broken hearted people living in the world agree
There will be an answer, let it be
For though they may be parted, there is still a chance that they will see
There will be an answer, let it be
Let it be, let it be, let it be, let it be
There will be an answer, let it be
Let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be
Let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be


And when the night is cloudy there is still a light that shines on me
Shine until tomorrow, let it be
I wake up to the sound of music, Mother Mary comes to me
Speaking words of wisdom, let it be
Let it be, let it be, let it be, yeah, let it be
There will be an answer, let it be
Let it be, let it be, let it be, yeah, let it be
Whisper words of wisdom, let it be


Whatever your beliefs, may you have a gentle, peaceful day.
Let it be.

P. S. I just talked to Jud. He looks fine. He said that the biopsy was "no big deal." The worst part was the novacaine.  What a guy!

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

Fluffybutts in the leaves


Love those little Fluffybutts!