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I gave these out at my mother’s BEAT cancer party. Everyone still wears them. I just wish it was a little smaller…it falls off of me all the time. I also had my mother in law make purse pulls with a silver tree charm and green and brown crystals. They are beautiful, and when someone asks about it…I get to explain cholangiocarcinoma to them whether they want to hear it or not.

I agree with Marions. You had great success with the last chemo…almost 2 years. Your success will continue. Dr. Lenz is an amazing man who does not want to give up. He always comes up with something else.

Summer girl, yes the fatigue is normal. My mom was 63. It would drive her crazy because there was always something she wanted to do but couldn’t because she was so tired. We limited visitors to one a day because it would tire her out. However, when she was feeling really tired we would talk to the doctors and get a blood transfusion. She always felt so much better afterwards. In fact I would live to sit with her during her transfusions because her face and chest would get so rosy towards the end of the transfusion. She always looked and felt great afterwards.

Thank you Pamela. I always appreciate your thoughts. At least we expect to feel this way right now. I don’t know if it would be normal or healthy to go on like nothing has happened.

How is your daughter doing? I haven’t kept up with the message boards too much lately. Last I knew her tumor shrunk… Wonderful news. Also, I think she was not able to get chemo…I know how upset my mom would be when she couldn’t get her chemo, but the timing was always perfect. Gave her a little break. Always thinking of you two.

My mom wanted to be cremated. The funny thing is I am having such a tough time with it. I like going someplace to visit my grandparents. They funny thing is I will have her ashes (until my step father passes), so she will still be with me. But I want someplace to go. It is funny the things we want.

I think all families should have these discussions while everyone is healthy. These discussions are very hard when you add in a terminal illness.

You have too much to worry about, please don’t let your sister bother you and enjoy the day with your dad.

Kathy, I am sorry to hear that you have to go through this with your sister. Your sister will miss out. She can have her services there. When the time comes, there is nothing more that you want to do than to do everything your parents would have wanted. However, while talking with our funeral director he said most families did not work as well as we did together. You sister will regret it one day. But you just want to make sure your dad is happy. We had a social worker come and talk with us about my moms funeral plans before she passed…and she kept going over it with us to make sure my mom had what she wanted. My moms brother never came to see my mother since her surgery over a year ago. She did not want him at her funeral. The day after her funeral I dropped off her mass card with him. Hopefully his wife passed it on.

Do ask about palliative care. My mom started on palliative care because she wanted to do more treatments. I don’t know if different insurance policies do different things. But in the end, the palliative care team was the same as the hospice. The only difference was that the nurses came around more being on hospice and there was no co-pay for prescriptions or medical supplies.

Best of luck to you. There were some questions that I did not know what to do when my mother passed, such as, did she want to have a rosary? We did one anyway. And we had a private viewing with just us family members. They closed everything before they let in other people.

Marion, My mom was a fighter and never wanted to give up. At the beginning of September when she was in the hospital for a week getting blood transfusions and stuff, I had gone to speak with her doctor. Her doctor told me she only had a few months left. The doctor, without telling her how long he thought she had (remember, she didn’t want to know) suggested my mom start on hospice care. However, my mother also knew that there was still a treatment that could have helped her. So the doctor suggested palliative care. My mom was having a difficult time getting around since mid July. When I would bring her in to the hospital for her chemo she had to be in a wheelchair. She was unable to walk to far. therefore, the doctor suggested palliative care so that the nurses would visit my mom instead of her having to go to the hospital for blood work and stuff. After my mothers chemo treatment she would go in for 4 days in a row to get her white blood cell shots. Her palliative care was set up through Kaiser. I guess the difference between Palliative care and hospice is that you are still able to undergo treatments with palliative care. You can not have anymore treatments with hospice. Both manage pain. Hospice you get all your medications and medical supplies for free. While under palliative care you still need to pay for those. The pain medications were starting to add up and that was why my mom decided to go over to hospice. However, she wasn’t on hospice for more than 2 weeks. Her staff still stayed the same. However, with hospice, the nurse was visiting twice a week instead of just once. The doctor had in place for a nurse to visit my mom everyday on the day she passed. But with palliative care my mom also had a physical therapist come to the house to see how she gets around. A social worker, who worked with all of us came over weekly. A bath aide came in twice a week to give my mom a shower. My mother really enjoyed the chaplin that would visit her every week. He even spoke at my others funeral.

I am thinking you need to be refered by your physician.

I just wish we started on palliative care much earlier. My mother hated going into the hospital. The staff was wonderful. Once a bath aide came in place of Jane, my mom wasn’t crazy about her, and then she never came again.

I hope that helped. There may be specific questions that you want to ask. Please don’t hesitate. Just know that my head is in a fog right now…I don’t know if I make any sense.

By the way Marion, I have a few checks that people gave to me to send in to the cholangiocarcinoma foundation. I’m thinking I just send them to the address listed. My classroom parents were also very sweet and sent in a donation.

Dear Crystal,
I am so sorry for your loss. And I have no words of comfort as I am in your same boat. I don’t believe my mom is gone. Just be thankful you were able to give your mom a grandchild that she was able to see and enjoy, even if for a short time. You know how she enjoyed holding her and just seeing all of your babys firsts.

I thank you Pam for your advice. I keep telling my daughter this is the easy part, but in a couple of weeks, everyone elses life will go one. However, that is when it will get difficult.

Then when I think about how difficult this could be I think I was fortunate to spend 40 years with my mom. And as hard as this was on my mother, she couldn’t imagine having to go through watching me or my daughter suffer through this. So to the other Pam, I want you to know I think of you and your daughter daily and my thoughts and prayers are with you both.