Amy, so sad to read this latest update. Good for you for exploring your options. I will keep you in my prayers!!

I'm waiting for my parents, sister, children, ex sister-in-law and ex-husband to get to the hospital. I am hoping that although, I'm still in a great amount of pain, that seeing them will be fun. I have been told I will not leave until after the weekend, so I don't have any false idea's about busting out of here. I just hope this hospital is ready to enjoy the long weekend with me. There is a conference room across the hall from my room. They call it "the libary", I believe that will be my room for the afternoon. Or my livingroom, it has a bathroom several coaches and matching chairs and tables, and a 35"tv.
I am also thinking about a small area outside under some old oak trees with some benches, we could hang out there too. I wonder when the last time a pateint was there to enjoy herself was? As long as I tell the nurse and have the family, I whould be just fine.
Yesturday when my doctor came in to check on me, I really felt pressured to make up my mind NOW. He wants me to pick either hospice or chemo. I feel like if I tell him Tuesday when he comes in that I would like a second opinion that I will "lose" any and all help from him. At this point I am even afraid he will withdrawl any pain meds he might precribe and just tell me goodbye.

Amy,

I have an idea that your hospital is in for some good times this weekend. If you can't go to a holiday party, glad the party is coming to you.

Regarding your doctor...No doctor worth his medical license is going to withdraw pain meds because a patient wants to explore options in a life or death matter. Can he help you get your case elevated to the tumor board ASAP so the RO and MO can weigh in as well? Are you able to get to other facilities for additional opinions?

Are they keeping you in the hospital for the pain meds or the trach...or both? Have you tried the fentynl patch? That might give you a little more mobility if the oral pain meds aren't cutting it.

Amy,

YOU DO WHAT"S BEST FOR YOU AND NO ONE ELSE!!!

Amy one thing yuou should never worry about is not getting the pain meds you need,no doctor who values his licence or who cares about his patient would ever do that..Just enjoy your weekend sweetie.xxx

Amy, I am sending you a HUGE hug. I am so, so sorry to hear your latest update. Push for all the pain meds you need. In this day and age NO ONE should be in uncontrollable pain. I wish I how some words of wisdom but I don't. I will continue to keep you in my prayers. Only you know what is the right decision for you. God Bless. Wanda

Amy

Not only do you tell the doctor you want a second opinion on what option (hospice or chemo) or other treatments, but also remember that the burden is on him of sending the tests etc to the new doctors and ask when he plans to do it. It helps if you can have a third party in there with you on Tuesday. There is no rationale reason you need to decide Tuesday. Some places do second opinions on line but you may have a tumor board right there in the hospital. Finally, cutting you off of pain medication is highly unlikely due to liability and license issues as noted by other posters. If anything, he should be giving you a patch.
Good luck and best wishes
Charm

AmyK
I'm so very sorry to hear about your reoccurrance. I'm glad, however, that you feel well enough to enjoy your family. Have a nice weekend.

Everyone has given you great advice. I certainly wouldn't let the doctor's intimidate you. I would definitely get a second opionion and/or check out other options.

I would like to add a bit of info from my experience. I was originally prescribed Cisplatin and radiation for my tx, but I convinced my doctors to do "Induction Chemo Therapy." There are several drug combinations available now, but the study I followed was Cisplatin, 5-FU and Textara (sp?). It severely reduced my cancer. I don't know by what %, but you could not feel the tumor any longer. I don't know if it would work in your situation, but I would difinitely ask. Your doctor's can research the study my treatment was based upon-TAX324. The treatment is specically for Stage 3-4.

I don't have the info in front of me at the moment, but a hospital in PA does laser surgery for head and neck cancers. If you want more info, let me know.

Amy, please know that you are in my prayers.

Sandyst

Amy: What to say? Boy this really sucks that it is back again and that you are facing such difficult choices. Ditto what the others said about your doctor. Do not let them intimidate you - this IS about you, and you should get exactly what you want.

When I read your post one thing that came through so strongly was your determination to make the MOST of every second. You go girl. Enjoy every second. I love your positive energy.

I too would recommend getting the patch for pain control with something else prescribed for breakthrough pain. We have the meds to make sure that you do not feel the pain - there is NO reason for you to be in pain - they just have to put the effort in and get the cocktail right.

You are in my thoughts and prayers.

Donna

Amy,
Enjoy your family time. It seems strang that the doctor gave you such a deadline. Maybe he is operating under "do something or clear the way for another patient." I certainly hope not and the he only suffers from a poor bedside manner. ditto to the suggestions for other opinions. you should insist upon this. Prayers for a speedy relief from the pain.