louise

Mary’s son,
Welcome. I agree with Ron and Marion. However, in addition to rest, Mary should continue any physical fitness program she might participate in as much as she feels able to do so. I did water aerobics. If she has not had a fitness program, it might be time to consider one. Working out helps maintain energy, keep up a good attitude, and (with the right program) also provides some social benefit. When so much of my life seemed out of my control, water aerobics was something I could control. Of course, you did not mention your Mom’s age or her condition before diagnosis.
One of the difficulties with cc is that the disease is unpredictable, and each individual is different, so the medicines/chemicals are also unpredictable. Even if we could tell you what to expect, we would be wrong some of the time. I was rarely warned of the side effects I experienced. In fact, I often experienced the opposite of what I was prepared for.
My mom was also diagnosed at the age of 86. She chose not to pursue active treatment of any kind and her oncologist didn’t think she would last a year. She lived almost 3 after that. Her primary weapon in the battle was prayer.
As for yourself, read all you can but don’t believe the stats. Encourage your Mom to make as many decisions as she is comfortable with, and support her in her decisions as much as you can. It is a good idea to have a notebook for all the questions that come up so you can ask the doctors at regular visits and write down answers. There are so many questions that if we don’t write them down, we may forget to ask and if we don’t write down the answers, we may not remember.
There are lots of caring people who visit here, so come back as often as you want. We use this forum for questions, sharing experiences, celebrating successes, letting off steam, venting, whatever is needed, and we give and receive feedback.
I’m glad you found us, but I wish you had not needed to.
Louise

Dear Houston Mom,
If they have not gotten you a skin care product specifically for people with chemo or radiation, please ask for it. It can make a tremendous difference. Also, the mouth of many chemo patients gets very dry, which can make cavities and mouth sores much more likely. So, talk to your dentist because there is a product for inside the mouth, too. I think it was called Biotene.
Louise

Hi, Donna!
Jaundice was a big issue in determining what I was experiencing. An ERCP was performed in early May 2007. The jaundice had progressed for a couple of weeks after we first determined that the liver was not completing its function. The ERCP showed that the bile duct was being squeezed from a growth on the outside of the duct, so a stent was inserted. Improvement began immediately, but it took most of a month for the itch amd jaundice to clear up. The surgeon I was working with said that we had to assume it was cancer, but exploratory surgery was scheduled for May 29. The pathology report from tissue taken in the surgery confirmed cc. The original site on the bile duct was not cut in the surgery, but the cancer had metastacized to the abdominal wall and a tiny spot on the liver. Both mets were surgically removed with clean margins. I began chemo in early July, 2007 and I’m still here to tell my story. If you want further details, you can use the search function above and put my name in the author spot. We were blessed with remission a couple of times, and I am currently on a monitoring schedule. Since I live in Northern Indiana, I don’t have a recommendation on California doctors.
Bile is sticky, so how long a stent will last is not easy to predict. My initial stent remained in place for about 16 months. The Friday I noticed my eyes turning yellow again, I called my surgeon’s office. Without even seeing the doctor, they scheduled me to have work done on my bile ducts the following Tuesday. I now have stents in both branches and a stent or two in the common duct. I no longer have the tube coming out of my side to an external drainage bag. These stents have been in place for almost a year now, but the doctor who inserted them indicated that the stickiness of bile means stents usually reclog in 6 months to a year, so I’m again alert to the possibility of itching and the return of jaundice. I’m greatful for each day I have. My stents are plastic, which do not work for everyone, but they do not set off alarms at the airport security, so I am happy. Supposedly, metal stents may be harder to insert, but are less likely to cause the body to reject them and less likely to reclog quickly. I hope I’ve answered some of your questions, but different people react in different ways, so I’m not suggesting what your Dad will experience.
Best of everything to you and your Dad!
Louise

Some of the doctors seem to believe in the SWAG theory given the statistics of this cancer. They make a Simple Wild-Ass Guess, so I have no qualms rejecting the notion that I might not have 5 years. I’ll listen to the doctors on a lot of things, but I don’t want to hear numbers with a prognosis.
Louise

Congratulations! Great news we all would like to hear.
Louise

Adam,
My mom was 86 when diagnosed, but she chose not to pursue radiation, full chemo, or surgery. Her oncologist didn’t think she would last a year, as she already had had open heart surgery, she was diabetic, had glaucoma and macular degeration, and other health issues. Mom continued her daily prayers, with beads in hand almost every time she laid down. She almost made it 3 years after that! No matter what they say, they do NOT know, so do not give up hope. Enjoy every minute you can. At the age of 82, your Dad should probably be encouraged to make as many of the decisions about his care as he wants to make. Yes, my Mom reached the point where she did not want to see the doctors anymore; she just wanted to stay home and die in peace with her family around. Our mourning is for ourselves. Mom is now free of pain and reunited with Dad, but we miss them tremendously. I am convinced that if it is his time, fighting won’t help, and if it is not his time to go, he won’t, so the decisions about his care should include his hopes and what he still expects to accomplish. Where the quality of life and the quantity of life are uncertain, the patient needs support for whatever they decide.
It is tough for the children, sometimes not so tough on the patient.
I pray for God’s peace for you, your Dad, and the rest of the family.
Louise

Amy,
I would be there with you if I could. It is tough, but you will probably have lots of support today. Many people will want to tell you why your mom was special to them. Many people told me how much I looked like, sounded like, or acted like my mom. I think adrenaline got me through the first few days after Mom passed, but on the way home after the funeral lunch, the adrenaline left and I was just sooooooo tired.
Please take care of yourself in the days to come. Remember, extra rest (which may be hard to get) laughter, and tears can help the body heal from grief, too.
You have my sympathy and prayers.
Louise