This is not a happy ending just to warn everyone. I just got back from Santa Barbara - I live about nine hours north in Mendocino. I had my dad fly to California, with my cousin who is an RT- she came as his nurse, for some cancer treatment. He was coming to do some immunotherapy treatments and then was going back to Atlanta for another round of chemo. He found out two days before he flew that his SCC in the base of tounge, tonsil, palate, had moved to his lungs. They said they saw a noddule, and I thought at least we foud it early. The oral stuff has been my main concern. Then he wakes up a day before he is leaving and his face is swollen, eyes shut, nose closing up, and is rushed to the hospital. He is given some solumedrole (spelling?) and swelling goes down and he gets on then plane. He was eager to get over here to get the immunotherapy. Well he flys on a Thursday and is in the clinic here Friday and starts treatment. He likes the doctors and is ready to kick butt. The clinic closes over the weekend and that Monday is Memorial Day. He wakes up Tuesday morning and his head looks like a watermellon. His nurse takes him to clinic and they tell her take him to ER. ER does some scans and releases him. I arrive that night. I meet my dad 7am next morning at clinic because I am going to sit with him all day and want to check out the clinic and meet doctors. When I walk in I am looking around and I can't find my dad. Then my cousin calls my name and I look back to where I was just looking and there is my dad. I walk over and say "Hey dad you made it!" and say "I am going to find your doctor", my cousin walks out with me and I fall to pieces. Nothing could have prepared me for what has happened to my dad. I just flew to Atlanta a few weeks ago and he was just out of surgery but doing ok. I didn't think the big tumors on his neck were shocking back then-like I didn't notice and was so glad I still had him alive. This was so different. I pulled it togther and go back in- give him a big hug and tell him I am going to get the best doctors and whatever he needs to get better. He was so upset and scared when I was looking at him and holding his hand -he just shook his head no. He didn't want me to see him like that.
I talk to the doctors and they tell me that after they reviewed the scans they came to the conclusion that the tumors are squeezing around the jugular -thats the good side- and the other side is accluted. No cirrculation. Maybe even during the last surgery artery was removed. Fluid is getting trapped causing 'pumpkin head syndrome'. They tell me if his head and neck swell any more his blood flow will be cut off to the brain. He is in danger of having a stroke. They cannot put in a stint. So we get him on prednisone, cut back fluids, start lasiks, and call VA to find out what they gave him in Atlanta when he first began to swell. The doctors call the VA like 40 times and we have to keep signing med release forms- which we did before he flew out- they finally tell us it was the solumederole. We get everything back to somewhat normal and do treatments for a few days. 5am I get a call(I am in a hotel down the road) my dad is getting rushed to the ER because he pulled out his trach and RT can't get it back in. At the ER a doctor pulls me aside. I tell him dads trach is like 3 weeks in and he is not used to it yet. He won't use inner cannuals because he feels it takes up space in trach and he can't breath as good. He also has this thing that he thinks trach is got mucus always in it so he pulls it out 3-4 times a day for us to clean. He is his own worse enemy but I understand the whole thing. It is so sad. SO doc tells me to come looks at scans -this is a first- these doctors in Santa Barbara are great. I am looking at the lung scan-xray- looking for the noddule that the VA was talking about- that they never showed us- we never saw- and I can't find it. Then he says "Ma'am it is right there that white area". I could not believe my eyes. It was the size of a lemon. It was like standing infront of a hurricane knowing this is it there is nothing you can do. This is why he pulled trach out in the middle of the night. He can't breath because the tumor in the lung is pressing on the bronchial tubes, but he had no idea what was happening. In the next two days- back at home(at apartment the clinic rented for us) he comes down with pneumonia-they are not sure it totally cleared up from a month ago- and staph infection. His blood pressure is going haywire, potassium and magnessium are depleated, dehydration, needs a blood transfusion, can't talk, write, and articulate complete toughts or sentences, and the neck and face swelling out of control again. He goes back to ER and admitted into ICU where he still is as of now. The doctors tell me he will not be going back to Atlanta. They tell me to contact Hospice. I am not ready for this. I would not have had him come here if I knew he was this sick. He wanted a miracle to happen by coming here. I don't think he knew he was that sick. I don't think the VA explained it to him- or maybe they did. Nobody knows. I have neve seen anyone get this sick so fast. This cancer is so aggressive I can barely grasp my head around it.
My dads sister and brother are flying in.
I had to come back to home after I got him setteled in ICU because my daughter ended up in the hospital(kidneys) while I was away and my housesitter had to go. He was so sweet. I said "Dad I have to go my kids need me, I'll be back in a few days. You are in good hands and the doctors from the clinic are coming here to see you and the doctors at the hospital. Darcy is here(his niece and 24hr nurse). Your gonna feel better in a few days. I love you" He did the yellow pages finger do the walking thing like -Get outta here, I'm fine. He is the stongest guy I've every known. I cried the whole way home for nine hours. I had no idea this was going to happen. I thought he'll be in this great clinic with a great view of the beach- like a vacation. I thought he'd be a new guy after 3 weeks. Now he is going to pass away. Well this will now be considered the worst two weeks ever for me and my dad. The doctors say it is going to be day by day. I am at home with my 5 kids. It is their last week of school. My husband is out of town. I feel helpless. I want to get in my car and drive as fast as I can. Everytime the phone rings my heart stops. The inevitable is near. I am going back down in a few days and I will be with him till the end. I hope he can wait for me. Just an update. I wish I had better news but I don't. Talk to everyone soon. My prayers are with everyone.