amalie79
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Charlene–
I, too, am very close to my father. My only sibling is 11 years younger than me, so I was an only child most of my childhood. I know exactly how you feel– I generally don’t talk to other people about how I’M feeling about it, but occasionally it’s really cathartic to just tell someone that you’re actually not ok when they ask you you’re doing. It breaks my heart to see my father so sad and my mother feel so helpless, and sometimes I feel guilty that I haven’t had children yet. But I also know how much it upsets him to see me upset. And other people– my father’s friends, mostly– can’t keep from crying when they talk to me and I’m not really sure what to say to them. That, or they ask me a lot of questions about him because they don’t want to upset my mother; it’s like it never occurred to them that it might upset me to talk about it. But I know they mean well, and it means the world to me to see that so many people love him and care about him. That has been so wonderful to see.
All we can do is what we can do, I guess. Just take comfort everywhere you can.
Kris–
The first visit to MDAnderson was in August this year. He was considered unknown primary. At that time, they consulted to decide which specialty of the hospital he should go to: unknown primary or liver or something else. I think they do this with cholangio since it is a difficult diagnosis. From that point on, it was pretty smooth– especially considering how busy they are.
He is on a plane to Houston right now, and I know there have been some scheduling SNAFUs, and the doc he has been seeing (the male Dr. Brown) is leaving the hospital, so that’s probably the cause of some of it.
I would warn you of one thing: since we live in NW Arkansas, and my father enjoys his work and has been able to continue working, he decided to take his chemo here. He got the protocol from Dr. Brown and worked with a local onco. However, when some complications arose (mainly the ascites), my mother called Dr. Brown and they told her that Dad wasn’t his patient as such– the onco here is his doctor on a daily basis, since he’s not actually taking the treatment in Houston. It makes sense; I think my parents were just under the impression that the docs at MDA would monitor him throughout. This may be totally different if a big hospital like Baptist works very closely with them.
Caroline– I have looked at your blog, noted your good experience with the Xelox and with Zoloft and have passed this on to my father. I worry that some of his difficult appetite might be related to some depression, though on his better days and in the mornings, he has a very good, if slightly morbid, sense of humor about it. The bad days following the recent surgery were just very bad. As for treating the arthritis, the maintenance dose of prednisone and the hydromorphone seem to be taking care of a lot of it.
Whatever works…
A
Thanks to you all for your encouraging words. This is such a tough thing for all of us.
C– It’s funny how many parallels there are in our stories. My father will go back to MDA this week for follow up scans and I’ve asked him to ask about the work they’re doing there with Xeloda and Oxaliplatin, especially since I’ve seen some success with it on this site and in the clinical reports. Keep us posted on how he is responding.
You will certainly be in my thoughts.
A
