jclegg
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I am not sure where I heard this, but – someone told me that intrahepetic CC is more symton free – no jaunduce. Extrahepetic goes to jaundice. My husband’s cc is intrahepetic, and he still has not jaundiced, and the Doctor is thinking of putting him on hospice any day. now. I hope this helps.
Joyce C
Lainy,
I am so happy about your good news. When any of us has good news, the rest feel SO good about it. Like Sophie said – we’re a prayin.Joyce
between the letters to Oprah, the pamplets, and the booth – things are looking good – thanks so much for your hard work.
Joyce c
I can’t tell you how uplifting it is for me to here your good news – that is wonderful. I love happy stories!
Joyce C
Charlene,
I am so glad that they got John’s pain under control, and that you are both at peace with this decision. We want so badly for our loved ones to not be in any more pain and suffering, don’t we? If someone had told me – even one month ago – that I would be at peace with the decision that Butch would enter hospice, I wouldn’t have believed it. However, I know now exactly what you mean. I try to remember – every day – that God’s grace will get us all through.Joyce C
Sophie,
I am so sorry that you didn’t hear the news that you wanted to hear from the Mayo Clinic. We are all thinking of you and sending prayers your way. I agree with you – those letters going off to Oprah are the bright spot in this otherwise very bleek week. I am so hopeful that they will read them and decide to do a show about cc (and other orphan cancers).Hugs to you,
Joyce C
Thanks Belle, I really appreciate the response. I know how difficult these last months have been for you, and I am grateful for the information.
Joyce c
Heather,
I am also wondering how you and your husband are doing? If I recall, we went out to Mayo about the same time last March/April, with the same result. I have always kept an eye out for your writings, and the one I saw the other day indicated that things are not well. I am praying for you, that God’s love will shine through on your family, and help you through this tough time.
Joyce C
Thank you all so much for your kind messages. Things are REALLY starting to get crazy now! The Hospice nurse came yesterday morning. Now – Dr. Gamblin (from UPMC) told us to come home and find a good palliative care Doctor. He said the cancer spread – mets all over, and 3 small tumors where the original remaining 25 % of the liver is (Top Left). Otherwise – liver regenerated well, reading good, etc. He said he does not need hospice yet -just a palliative coordinator. We came home and went to our PCP. He said he IS the palliative care Doctor for that practice (Thank God – we love him). He took me aside, after reading the radiologist’s report from the CT scan from Pittsburgh, and siad he thinks Butch has only 4 or 5 weeks left to live. I should tell you that Butch contacted another infection – and is being treated with a course of antibiotics for it – another week in the hospital in Pittsburgh, and pills for home. He was horribly sick. Well , the Doctor said he would come to our home from now on to see him, and called hospice for us. Well, he has improved – a bit – and – when the hospice nurse came yesterday, she indicated that she does not think he is as far advanced as the Doctor seems to think, and thinks maybe he should stay on home health for another week or two – so we can monitor the ca 19-9 (it actually dropped a bit this week. So – we are totally confused now, and trying to make a decision. The real problem is that he cannot eat more than a few bites at a time. I have tried everything – small protions, more frequently, tempting foods, he doesn’t get enough calories. He dies drink ensure, and I have started giving him benecalorie also. He is down to 138 – from 180. He is not in much pain (couple of pain pills each day – sometimes 3), we are controlling the nausea as best we can – got some medication yesterday to get rid if the gerd (or whatever it is), and I try to get him out of the recliner (we went to our granddaughter’s birthday party Sunday). Since we got home from Pittsburgh last Tuesday, the confusion has cleared up and he is doing pretty well, mentally – I am not so sure about me!
I wrote this long, long message to describe where we are at – I guess you all have heard this story many times before, but – any light you can shed that will help me steer the ship away from the iceburg would be so welcome. I forgot to say that he is on lasix , as he can’t stand up w/o losing his breath (the Doctor’s in Pittsburg said he had Ascites, that is one of the reasons they kept him a week). We are going to get him on oxygen this week, I believe – that would help him, I believe.
Thank God for this forum. I love each and every one of you.
Joyce C.
Colleen,
I am so sad to hear of your husband’s passing. My thoughts and prayers are with you and your girls. May time heal your hearts.Joyce C
Charlene,
I know exactly how you feel. Butch has never recovered from his surgery, and – when we went to Pittsburgh for the follow-up, the CT scan shows the cancer has returned – stronger and angrier than before. The mets are bad and there are 3 new tumors on the remaining liver. He is too weakened to withstand chemo, so today the doctor called hospice – they will talk with us tomorrow. I, too feel great relief with this decision – he went through so much over the last months, and I don’t want him to suffer any more. So – I am at peace with the decision.Joyce C
Lainy,
Tell me how to e-mail this to you – did someone say there is an e-mail address stored in here – I looked under your user name, but – dodn’t see an e-mail address??Will you take a look at what I send and see if it is appropriate? I don’t know exactly how to do this – I did mention orphan cancers, however!
Thanks – Joyce c
