It has been quite awhile since I posted here and I did not dream I would be back so soon with more issues. My Dad was finally recovering from Radiation and Chemo and finally feeling okay. The Drs were amazed at how well he did through all of it.
He had a 21 surgery, jaw replaced, neck dissection, bye bye evil cancer . . .

A month ago his right arm and shoulder started hurting . . .the pain got worse. He went to his regular MD who x-rayed the area and said it was arthritis and sent him on his way. Pain increases. Went for a checkup with his cancer surgeon. Six minute visit. Cancer surgeon literally yells, yes yells at us because my Dad lost 12 lbs in three months. Does not even look at his shoulder when we tell him he has pain. Told us Dad needs to see the PT Dr. again . . we are in shock because he has yelled at us, hmmmm, do all world renowned surgeon yell at their patients? Dad had his PEG tube removed because he hardly ever used it, he was eating fine on his own . . granted everything tasted awful from the Rad but he did not used the tube maybe 1 time a day for 2 months. Surgeon had told us he could have it removed last visit now is yelling at us because he had it removed . . . told us shoulder and arm pain is not his area . . . go to physical therapy

Schedule rehab appt. . pain really increases . . . suddenly area where neck and shoulder meets (right where the surgical clips are from his neck dissection) swells up and ruptures on its own. Goes to a Dr who lances swelling and takes a fluid sample. Area still draining fluid everyday. This is while I am away on vacation and of course they don't tell me until after I return. . .I was within driving distance, but of course he does not want to bother me. Results come back as no bacteria from infection but Path report states atypical Squamous Cells. Suspect Squamous Cell Carcenoma. Biopsy if necessary. Dr calls Cancer Surgeon who is now sweet as pie and spends 1/2 hour with us the next appt. He fears it is cancer and cannot remove it. CAT Scan of chest clear, MRI of head and neck show no mestatic disease. When asked Surgeon tells my Dad to get his affairs in order. 1/2 people in Dads position but who are in poor heath have 10 months. Dad is good health. Surgeon also says he is not God and of course cannot say how long anyone has but it is always best to have affairs in order. He was not saying that my Dad only had 10 months, but that is the only thing Dad and stepmom heard. They went home and called family to report my Dad is terminal. Days later I finally figure out what in the world is going on and sit them down and explain it all again. And then I call family and tell them to please come to me for any updates. My Stepmom (she is 75) tells me the Dr. whispered it to her that Dad only had 7 months. THAT ABSOLUTELY DID NOT HAPPEN . . .I was right there the whole time but this is what I am dealing with. She spent a week telling my Dad the surgeon told her 7 months and he was not going to make it. They only get 1/3 of the info correct which is why I am there to help them. THANK GOD I CAN BE THERE . . .

Another 3 weeks until we see RO who will give us the definitive yes or no as to having radiation again. MO says if no RAD then chemo TPF. I am so not getting this. There is no mass, so if cancer is in the soft tissue in the area and surrounding the nerves how do they know if they don't biopsy anything? They just through you into another treatment? How difficult will the TPF be for him? He can start on 8/4.

I guess because I am still dumbfounded that after all he went through that it is back (or never left) that I just locked up. I have been in denial for two weeks. I cried hard for about 20 minutes and then I could not cry. I sat in the Dr.s appointments and heard what they have to say and once I get home I still can't believe it. My Dad is in a chair all day long waiting to see Drs so he can get on with what he has to do. He does not ever sit still . . .always busy . . . now he sits there all day waiting. We finally have his extreme pain under control that he had to endure for about a month as the Dr's screwed up. He would just cry because it is so bad. How hard is that to see your Dad just cry? AM I CRAZY OR DO I NEED TO SEE IN BLACK AND WHITE THAT IT IS CANCER? Why do the apptmts take so long? Drs are on vacation and we sit an wait and I tried to get him in earlier than 3 weeks and there was nothing available. Realization is that there are just too many cancer patients and not enough drs and time . . .

I have checked back here to see how many of you are doing and I am so sad to see that all is not going well either for some dear people. I pray now , I prayed alot before too but now I am running out of prayers . . . but I will continue to try . . .

Thanks to anyone who is out there who has any advice, suggestions . . .

Laura