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,

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!



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 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.