My tumor is so huge, tongue, right jaw, up into my ear canal. I decided against such a major disfiguring and incapacitating surgery with such little chance of cure. I'm at University of Michigan right now, 12 hours post op Laparoscopic J tube placement...I can only open my mouth less than a half inch and only swallow liquids now. I hope to start palliative chemo soon to shrink my tumor. The oncologist here at U/M suggested a clinical trial, but that would entail a 2 hour drive each way, and I dont want to impose on my friends like that, and my father is unable to make that kind of trip weekly.

I know that nobody said life was fair, but this sucks the big Wally. I feel so bad for my father, losing his wife and youngest daughter in less than a year...and now he'll have to watch his only other child suffer a painful and lingering end fairly soon. Yup, the big Wally.

is there no a hope lodge somewhere near the clinical trial? Hugs

I don't know what to say but I couldn't read what you wrote and say nothing. I'm sorry that life has been so unbearably hard for you and your family this year. I hope the chemo starts soon and gives you some relief.

Have you met with the hospital social worker? They might be able to help set up lodging or transportation so that you can participate in the trial. If you have a friend who might be able to drive you, please ask. I know it sucks to feel like you're imposing but this is a crisis and you need help.

Also, if you aren't already talking with someone, a referral to your hospital's psycho-oncology department might be a good idea. I've recently begun seeing a therapist at my hospital and it has helped me a lot. It sounds like you could really use some support.

Anyway, maybe the last thing you need is my well-meaning advice. You know what's best for you and what you can handle. I just wanted to say that I'm thinking of you and wishing you and your father the best.

xoxoxooxoxxoxoxo Kellijojo.

Kellijojo, I'm so sorry to hear your news. It certainly sucks big time. I agree with Tracy, now is definitely the time to ask friends for help. No one would begrudge helping at such a time of crisis. I wish you love and peace as you decide on your course of action. Tammy.

Kellijojo - I am so sorry to hear your news. Please do not be afraid to ask your friends for help whether or not you decide on the clinical trial: it is a blessing to be able to give help to a friend or relation in need.
My thoughts and prayers are also with you whatever you decide.
Maria

PICC line in today, start carbo/taxo/Erbitux tomorrow. Anyone have any idea when my hair will start falling out? I hate, hate, hate being hooked up all nite to the tube feeding...and then spending so much time during the day giving myself water. No time for myself at all. I have 2 friends who have been indispensable, driving me to Ann Arbor, and all my appointments here. Dad hasn't really been any help at all, sadly. He's barely able to function because of his IBD and depression. As they were putting in the PICC today, I laid there thinking ,"Why am I doing this?!? Why???"

Why?

You mean hair falling out like breast cancer hair falling out? Don't think that will happen with your cocktail of chemos.

Hi Kellijojo, I am pleased that your friends have come through for you. You deserve their help and friendship and love. Good on you for not just rolling over. I hope the chemo does its job and improves your symptoms. Did you get into a trial?
I cant answer your questions re the hair loss but I'm sure someone will be able to. There are just so many questions we all ask that there are just no answers for. Take it one day at a time. Tammy

Hi Kellijojo

I assume the "taxo" part of your chemo is Taxotere? this is the one that will cause your hair to fall out. Alex shaved his head as soon as the hair loss started as it didn't start falling out "gracefully". It tended to let go in clumps so he had a series of bald spots. I do not remember exactly when it started but my sense was that it was around the second dose??? I remember a girlfriend of mine telling me that the doctor was amazed she still had hers at 6 weeks. Unfortunately, it fell out after that and like Alex, she ended up shaving it.

so sorry you are going through this again but so glad your friends have stepped up. Sometimes we are so preoccupied with "being a burden" that we don't realise that an opportunity for a true friend to help actually the opposite of imposing on them as it gives them a chance to be active in your treatment.