Topic: Moving toward the journey's end - sensitive
My husband Terry has fought hard for over two years with surgery, radiation and chemo but we have run out of options and are now concetrating on palliative care. Terry's chemo ended in early October due to rising bilirubin levels. Although he had many scans and other tests in an effort to identify a way to bypass the blockage of the bile ducts, we learned that the problem was due to compression of the tumors in the liver on the bile ducts and there was no available treatment. During the past three months, he has had good periods when we were able to get out of the house and to socialize with friends and family as well as more difficult periods.
Last week, however, he became very ill so I took him to the ER. His bilirubin is now over 13 and is continuing to rise and he is quite jaundiced. He has experienced increasing confusion and memory loss that is being treated with laculose. He has also developed very low blood pressure that becomes worse if he tries to stand and we have been told this cannot be corrected. His ascites had increased a great deal and were drained twice while in the hospital, giving him a greatly increased level of comfort. At my request, yesterday they installed a drain so the fluid can be drained in a bottle, thus eliminating the need for further hospital procedures. A surprising effect of the drainage of the ascites is that his ability to eat seems to have been restored. For months he has been living on liquid supplements, yogurt etc. As soon as the ascites were drained, he ate a chicken sandwich and he has been eating well ever since. I wish we had done this earlier.
We think he will be discharged from the hospital today and the plan is to move him to a rehab facility for a week or so. We are not optimistic that he will benefit much from rehab at this point but it will buy me some time to set up home health care. I know that many of you have had good experiences with hospice and I may consider it at some point but, based on a previous negative experience with hospice for my mother, I would prefer to avoid it as long as I can. Fortunately, I will be able to hire caregivers to help me through this process. We don't have children and there are few family members nearby so I will need some help.
Despite all that is happening to him, my husband refuses to believe he will not recover. The aide at the hospital told me he said he plans to return to work as soon as he gets better. It breaks my heart when he says things like this but maybe he needs to retain a little bit of hope to get through this period.
I haven't posted for quite some time but it has helped me to put these thoughts in writing. This discussion board has been a wonderful resource for us and, once all this is over, I hope to return to doing some advocacy work for the Cholangiocarcinoma Foundation.