update on joe

[Guest guest]

Dear PSC Partners,

Last week an ERCP to place a permanent stent in Joe’s bile duct was

successful. However, this did not resolve Joe’s jaundice. He became severely

dehydrated at home and had to be re-hospitalized. It was discovered that the

tumors had occluded the ducts, progressed to his lymph nodes and into the

abdominal cavity. The four chemotherapy treatments he had endured had done

nothing except make Joe feel sicker. He is a trouper yet! He says he will still

beat this cancer. Last night the medical team told us that it was time to take

Joe home, control his pain, provide comfort, palliative care and the love of his

family and say our goodbyes, that there is nothing else that can be done for

him. This we cannot accept. We are trying to get him another appointment to MD

’s Cancer Clinic ASAP, but they probably won’t be able to fit him in

until next week. Today Joe will be discharged from the hospital to his home. We

are all going to stay by his side and keep trying to save his life.

Chris

[Guest guest]

Sorry to hear this news about Joe. I get depressed whenever I hear

news like this especially when one is so young. And I always wonder

with all the tests people with PSC are constantly going through on a

regular basis, how is it possible that cancers are found when they

have progressed so much. My heart goes out to you, Joe and your

family.It is good to have the spirit that you both have and with God

everything is possible so never give up hope.

Rita (Florida)

[Guest guest]

Chris-I am sorry to hear of this news-it makes me sad, but am glad to hear of the spirit and positive attitude each of you have taken. My prayers are with you, Joe and your family at this time. May you each find the the peace, patience, comfort and guidance you each need as you struggle and support each other.

Brother , 30, UC & PSC

[Guest guest]

Chris:

May the grace of God be with you and Joe and the family.

Miracles do happen and I hope one is coming Joe's way.

Hugs,

Dee

[Guest guest]

>

> Last night the medical team told us that it was time to take Joe

home, control his pain, provide comfort, palliative care and the love

of his family and say our goodbyes, that there is nothing else that

can be done for him. This we cannot accept.

I don't post often, but read daily. I am so sorry to hear about Joe.

I'm glad you are going to look for other doctors - as someone in

another post said " miracles do happen " . My sis-in-law was told she had

6 mos. to live after being dx. with cancer. That was unacceptable to

her and kept looking for a doctor who could help her (and she did).

That was 15 years ago and she is healthy as a horse. I, as the rest

of us on the site, will keep you, Joe and the family in our prayers.

Liz

[Guest guest]

Dear

Our thoughts are with you, Joe and your family. He sounds like a real

fighter, and may you all find deep strength to contend with his illness.

Martha (MA)

[Guest guest]

What a devastating message from the doctors. I'm glad that Joe and you have

the courage to continue to fight. I hope that you can get an appointment

ASAP at M.D. . I'm sending you my prayers and best wishes.

Continue thinking positively. There is always a ray of hope to cling

to....Thinking of you and sending positive hopeful vibes your way.

Ricky

>He became severely dehydrated at home and had to be re-hospitalized. It

>was discovered that the tumors had occluded the ducts, progressed to his

>lymph nodes and into the abdominal cavity. .

>

>Chris

>

>

>

>

>

>

[Guest guest]

Have you heard of a book called " Love,

Medicine and Miracles " by Dr. Bernie Siegel? My G.P. told me about it

after I complained about having to take a lot of medication. I felt that having

to take medication makes that I think about my health problems too often. My

G.P. told me that I should try to change my attitude towards being happy that I

am in the opportunity to take medication to help me with my health problems. My

G.P. recommended I read the abovementioned book. Bernie Siegel is an oncologist

who tries to help patients cope with their illness with a positive attitude and

" self empowerment " . The author documents many " miracles " in

his book and I definitely recommend reading it.

Regards,

Chaim Boermeester, Israel.

From: [mailto: ] On Behalf Of chrisgrace@...

Sent: Friday, March 02, 2007 4:40

PM

To:

Subject: update on

joe

Dear PSC Partners,

Last week an ERCP to place a permanent stent in Joe’s bile duct was

successful. However, this did not resolve Joe’s jaundice. He became

severely dehydrated at home and had to be re-hospitalized. It was discovered that

the tumors had occluded the ducts, progressed to his lymph nodes and into the

abdominal cavity. The four chemotherapy treatments he had endured had done

nothing except make Joe feel sicker. He is a trouper yet! He says he will still

beat this cancer. Last night the medical team told us that it was time to take

Joe home, control his pain, provide comfort, palliative care and the love of

his family and say our goodbyes, that there is nothing else that can be done

for him. This we cannot accept. We are trying to get him another appointment to

MD ’s Cancer Clinic ASAP, but they probably won’t be able

to fit him in until next week. Today Joe will be discharged from the hospital

to his home. We are all going to stay by his side and keep trying to save his

life.

Chris

[Guest guest]

Last week shared with us the very sad and devastating news that

Joe's doctors had given him. I am so sorry for Joe and all of his

family and friends.

I have thought and thought about the words that wrote:

" ...Last night the medical team told us that it was time to take Joe

home, control his pain, provide comfort, palliative care and the

love of his family and say our goodbyes, that there is nothing else

that can be done for him. "

If I could offer another perspective on these words. Sometimes when a

disease has progressed to the point that medical treatments will not

work and may make someone even sicker and prolong suffering, the hopes

and goals for treatment and care do shift. This is a complex and

emotional time. Yet, I deeply believe that as every one of us passes

through our final phase of living, through our dying process, we can

still fulfill hopes and dreams. We will still grow.

Medically, providing comfort and symptom relief is ongoing. Managing

pain and symptoms can be very challenging, but that is a first and

foremost goal for palliative care. The goal is to have the individual

feel as well as possible so that the quality of each day is as good as

possible. The medical team will continue to provide support to the

individual and the family so that all needs are met, including

physical and emotional as well as helping with social and spiritual

support. If these needs are not being met, the patient/family should

speak up!

When the doctor says that aggressive treatment is not going to benefit

the patient or cure or slow the disease, and may actually cause more

harm, the doctor is not saying that the situation is hopeless. Hope

often changes from long-term goals towards short-term or spiritual

goals. Hopes often include feeling valued, continuing meaningful

relationships, validating memories, creating new memories, sharing

humor. Hope may mean a pain-free day, feeling loved and secure, or

knowing that important decisions are finalized, paperwork completed,

etc.

The ability to write important messages for family and friends or make

a video can be so important. And for family and friends to be sure

their loved one understands how influential they have been to others.

To reflect on their contributions to their family, community and

work. To know how others will keep their memory alive for children

and grandchildren. To even hear seemingly silly comments like, " when

.... happens I will always hear you say... " or what you will think

about on special days.

And the ability to care for our loved one as he or she goes through

the dying process is a gift to both the loved one as well as the

caregivers. Many people feel it was truly an honor to have been a

part of providing care to their loved one as they finished their

journey through this life.

I apologize that this is long. I hope I did not offend anyone as I

shared my thoughts. If anyone wanted an excellent book, " Handbook for

Mortals: Guidance for People Facing Serious Illness " by Joanne Lynn,

MD and Joan Harrold, MD, Oxford University Press, 1999.

Joanne

(, Ca)

[Guest guest]

VERY WELL SAID...I FEEL EVERYBODY HAS THE RIGHT TO CHOICE HOW THEY WANT TO PASS..JUST PLEASE HAVE EVERYTHING WRITTEN DOWN. FOR YOUR Dr's ,FAMILY AND FRIENDS.... REALLY THIS IS FOR ANYBODY NOT JUST THE PSC FOLKS.. I SAW A SHOW ON TV ABOUT DIEING, AND HOW DIFFERENT FAMILY'S HANDLE IT. ONE LADY HAD CANCER AND HER WISH WAS TO HAVE ALL HER FAMILY AND FRIENDS COME OVER FOR A SAYING GOOD PARTY AND TALK AND REMEMBER THE GOOD TIMES THE LADY PASSED ON SHORTLY AFTER THE PARTY BUT SHE WAS VERY GLAD SHE HAD THE TIME WITH THEM ALL..... I HOPE I HAVENT UPSET ANYBODY WITH MY REPLY. JEANNE P.S. MY WISH IS TO HAVE A PARTY AND DANCE. THEN I'M DONATING MY WHOLE BODY TO THE UofM HOSPITAL

FOR MEDICAL RESEARCH...jmhatch39 wrote: Last week shared with us the very sad and devastating news thatJoe's doctors had given him. I am so sorry for Joe and all of hisfamily and friends. I have thought and thought about the words that wrote:"...Last night the medical team told us that it was time to take Joehome, control his pain, provide comfort, palliative care and thelove of his family and say our goodbyes, that there is nothing elsethat can be done

for him." If I could offer another perspective on these words. Sometimes when adisease has progressed to the point that medical treatments will notwork and may make someone even sicker and prolong suffering, the hopesand goals for treatment and care do shift. This is a complex andemotional time. Yet, I deeply believe that as every one of us passesthrough our final phase of living, through our dying process, we canstill fulfill hopes and dreams. We will still grow. Medically, providing comfort and symptom relief is ongoing. Managingpain and symptoms can be very challenging, but that is a first andforemost goal for palliative care. The goal is to have the individualfeel as well as possible so that the quality of each day is as good aspossible. The medical team will continue to provide support to theindividual and the family so that all needs are met, includingphysical and emotional as well as helping with social

and spiritualsupport. If these needs are not being met, the patient/family shouldspeak up!When the doctor says that aggressive treatment is not going to benefitthe patient or cure or slow the disease, and may actually cause moreharm, the doctor is not saying that the situation is hopeless. Hope often changes from long-term goals towards short-term or spiritualgoals. Hopes often include feeling valued, continuing meaningfulrelationships, validating memories, creating new memories, sharinghumor. Hope may mean a pain-free day, feeling loved and secure, orknowing that important decisions are finalized, paperwork completed,etc. The ability to write important messages for family and friends or makea video can be so important. And for family and friends to be suretheir loved one understands how influential they have been to others.To reflect on their contributions to their family, community andwork. To know

how others will keep their memory alive for childrenand grandchildren. To even hear seemingly silly comments like, "when... happens I will always hear you say..." or what you will thinkabout on special days.And the ability to care for our loved one as he or she goes throughthe dying process is a gift to both the loved one as well as thecaregivers. Many people feel it was truly an honor to have been apart of providing care to their loved one as they finished theirjourney through this life. I apologize that this is long. I hope I did not offend anyone as Ishared my thoughts. If anyone wanted an excellent book, "Handbook forMortals: Guidance for People Facing Serious Illness" by Joanne Lynn,MD and Joan Harrold, MD, Oxford University Press, 1999.Joanne (, Ca)