for ashley, who just found out

Hi Ashley,

My name is Brenda Franson. My husband, Scott was diagnosed with cholangiocarcinoma in April of 2007 and went through a chemo/radiation/transplant protocol at the University of Utah in Salt Lake City. The treatment was taken from the Mayo protocol. I'm grateful Arne emailed me with your post because I haven't kept up with the psc support group for a while now.

I hear your scream of frustration loud and clear. Yes, it is extremely agonizing getting everything sorted out and treated and cholangiocarcinoma is so serious. Take a deep breath. I'm praying that I can give you the information you need.

Ok. About the immediate concern of getting your mother in earlier to the Mayo. I was impressed that they could get her in within the next three months. I think trying to get her in earlier is a waste of your energies. I know you are frustrated, but just by the date of the appointment I can tell that someone is advocating on your mother's behalf to expedite her care.

So obviously, the treatable window is extremely small for cholangiocarcinoma, BUT your mother has not been ruled out of that window. It is a great sign that they are even referring your mother to the Mayo. If they thought viable treatment was not an option, they would not have gotten her an appointment, let alone one so soon. .

Infiltrated does not necessarily mean that the tumor is going into the vessels. It usually means that the tumor is outside of the bile duct which does not always mean it is the end of the world. What I did NOT see in your post was the word "metastasis" which carries almost certain mortal finality when dealing with cholangiocarcinoma. The lack of that word in the report should give you additional hope.

With even the best news the Mayo clinic can give your mother, which would be that she qualifies for the chemo/radiation/transplant protocol, it is a long and painful road. Your mother will need all the support she can get. She will need you to advocate on her behalf. She will need you to research it out and find every available comfort, and most importantly, she will need you to breathe calmly and hold her hand.

It is the hardest thing to be a caregiver and have absolutely no control over the situation presented. It is excrutiating to watch someone you hold so dear suffer so terribly knowing there's nothing, absolutely nothing more you can do to fix it. So, you end up doing what you can, which unfortunately ends up mostly to be breathing and holding her hand.

I always felt like we were walking through hellfire which made the Stop, Drop and Roll crisis control plan ironic. Stop fussing, Drop to your knees and pray/ drop anything nonessential, and Roll your efforts into those thing that will be effective in helping the situation. Again, you still end up breathing and holding her hand. Overall, it is one, grand damn.

So, Scott is one year out from transplant. We are dealing with other health issues, but cholangiocarcinoma is not one of them. I do believe we are forever beings and that this life is just a little slice of the bigger picture. So, while I am not too terribly afraid of him dying (It would be really unusual if he didn't someday die, don't you think?), I am grateful to have him here and now. We can hope, and pray, and love, and do our very best, and still come out short, and learn that God loves us enough to work it all out in the end.

Many prayers for you and your mother,
Brenda Franson

By the way, I think it is a crock-the idea that God will only give us challenges He knows we can handle. I've always wanted to slap people who told me that.

Oh, and "patience building experience" is just another code phrase for hell. Really.