Dad's year... another bit

No one wanted to say the word 'cancer'. My sister, L. didn't want to think it might be pancreatic. Everyone we knew who had suffered this ... had died quickly and painfully. We knew it was stage 4, which won't always mean death, but does mean metastasis. And that's the problem with pancreatic cancer. The prognosis if you catch it before it metastasizes is SIGNIFICANTLY better. They can even remove the pancreas, but if it has spread they can do very little. Radiation does not work, because the tumors are seed like and cannot be targeted. They can't go in and clean a person up. They won't be able to get it all and it grows VERY quickly.

Dad went home from the Hospital. It seemed the blockage was clearing, things were moving in the right directions and he could eat without pain, but things were hard for him and his body was weak. He had a friend stay with him. I went home to California.

We got the results of his biopsy, the initial pathology was that it was pancreatic or liver cancer. Then we found out that it was pancreatic cancer. Dad tried to hide it from us. But we wanted to know. One of the hard things for him at this point was that he now had less privacy. His life was more open to us. We all needed eachother and we desperately beyond all things wanted to find a way to save our father.

I got home, hugged my family, did lots of laundry, got caught up on all the things that needed to be done and then... was it one or two weeks???... My father was back in the hospital. The blockage was there, eating was not something he could do at all. He was on ice chips and on an IV.

Dad hated the hospital. He did have a window, but the Television is so awful and there was not music. We should have had music for him. Music is good for the soul. Take a cd player. Get a cheap one. It will soothe and help to pass the time.

This time some kind of surgery was indicated for the blockage. It clearly was not going to go away. There was a great deal that had gone on during the 2 weeks Dad was home. We had all done massive research on possible treatments, Doctors... all kinds of things. The best thing to do is to look at every hospital in your area. See at least 3 doctors specializing in the area of oncology needed. Ck out all the various studies they are doing. Look at all the treatment options. Do all of it. Do the research. Find the best path for you.

My sister had moved heaven and earth and managed to get an appt with someone at Sloan Kettering. It is all exquisite, but there are also drawbacks. He was seen by 3 doctors. We all thought that SK would be best. The usual treatments would not yield a positive result, but some of the newer molecular drugs might help him. We thought we had found the way, the doctor, the best of the best. I think we still have doubts, but that is because our father died.

Now Dad was back in the hospital and because of insurance we were at another hospital for his surgery. We had a surgical oncologist and gastrointerologist at one hospital and we had an Oncologist with a big name and large reputation at another hospital.

The surgical oncologist was very pushy to Dad about switching to an Oncologist at his hospital. He was too pushy and my one sister just about went over the edge to him. The problem was he was pushing at two issues. One issue was the surgery and how it would all happen. Really it would not have been so hard to deal with this one if he had not been pushing the second one... of switching doctors before my father had even had his surgery. The doctor was a good person. He really believed that my father didn't belong at SK. He believed in his hospital's ability to give my father the continuity of care needed. He felt that having one doctor at one hospital and another at the other hospital was not good, because the ability of both of them to communicate and collaborate was not optimal... and given the different structures of hospitals and the stupid possessive, egotistical, and political games they all play................... unfortunately, he was probably right, BUT his bedside manner in communicating this left a lot to be desired. He would talk to my father when we weren't there. My father was scared, weak, on pain meds. Doctors talk to their patients, but patients who are that ill MUST have someone to listen in, help evaluate, help filter the information. It is NOT fair to badger someone. Anyway, Doctors, patients, and friends/families/advocates MUST work hard to work together and respect eachother.

The day of the surgery arrived. First we thought it would be a morning surgery, which incidently is better for the body and an individual's recovery chances. The surgery was pushed to late afternoon and finally around 4 They called for my Dad. This meant he would be taken from his room to the surgical floor. I could go with him to that floor, but not through the doors where prep, surgery etc.. would be done.

This time we were all very scared. Dad would have the procedure to remove and fix the intestinal blockage done again by endoscopy. I would not see the surgeon that day until after the surgery. I took him down. I was so scared. I was terrified and I was calm. I held my Dad's hand. The people that roll beds down to various floors with patients are wonderful. They sing, they make jokes, they talk to you. They are good people. My dad had his hair in a surgical cap. He was a bit drowsy. I told him how much I loved him. I kept hoping my love of him would make it better. I told him I would be there, I knew he would do well. I wanted him to not be afraid. I wanted him to live so much. I kissed his cheek. He squeezed my hand and he went through the doors.

I kept wishing that an angel would show up and make it all better. I was hoping for Touched By an Angel kind of magic. I was worried about not having told the surgeon that here was a person that deserved to live. Here was someone beloved by so many. It is a year later and I don't remember exactly how, but there was a young intern type in scrubs, who came out before Dad went in and said hi to Dad. Dad recognized him and said hi. He always remembered people's names and something about them. Dad was smiling at him and the intern kind of grinned back. He would be assisting in the surgery.

I think that surgeons and others don't come out until later because the family has this intense need to unload to talk ... I don't know... all I know was that I wanted to tell the Surgeon all sorts of things about my Dad, because in my mind somehow it would make a difference in his surgery. The young intern dissappeared somewhere and I was with my Dad still and then he went through the doors. Kind of hard to keep it all chronological. There are so many details and they play through my mind.

So Dad was through those doors where I couldn't go and I was going back up to Dad's room to get my things and go to the surgical waiting room. I got to the visitor elevator bank and there was the intern waiting for the elevator. I don't know how he and I were talking and I know he was trying to talk with me without saying anything wrong, but I think he just listened to me. The only real thing I actually remember saying to him was that my father was very loved. Somehow I felt like he would say that to the surgeon before the procedure. I felt like an important message would be conveyed and that it would be a helpful magic to make things better. I kept hoping he was an angel and that he would make it better. I kept wishing for that light to appear. Probably, my father was surrounded by angels, but I couldn't see. There isn't any logic at all to this. It is pure feeling and how the mind bends itself to protect our sanity and ability to cope.

So I went back upstairs and when I got to his room and there was no bed there and it seemed dark outside I began to cry. One of my Dad's friends was waiting there for me watching our things and he made me sit down. He said 'why don't you take 5 min to sit down. There is no hurry.' He was very kind and later he waited with me in the waiting room for the surgeon, which was what seemed a very very long time.

There was an empty desk in the waiting room with a phone on it and comfortable chairs everywhere. I sat at the desk and tried to do some paper work. I even answered the phone... physicians calling for families not there.... This woman came up to the desk and I looked up. "I'm sorry, I don't work here...." I didn't recognize another friend of my father's, who had come to see how things were. I was a little zoned. So we talked and we three waited and then she had to leave after a while so I waited some more and sort of looked at the papers and then realistically put them all away. I could do nothing. And that is kind of how we all feel... we can do nothing ... even when we do a lot... that is how it feels .. like nothing, because we cannot effect a change in the direction we want to go.

Finally, the surgeon arrived and he said.. 'let's sit down'. My calm was back. All the kindness in my heart was there for this surgeon. I believed in him and I kept thinking that I could not believe how he did his job. He is a surgical oncologist and he has to tell families and patients many days how sick a person is and what can and cannot be done.

So he told us that the disease had progressed a great deal in two weeks and that Dad had to start chemo quickly. (complications on that, but more later -- no chemo until 30 days after surgery due to drugs dissolving stitches when taken) I don't remember all he told me now a year later, but I have it all in my green spiral notebook. I do remember taking his hand, looking him in the eyes and saying... 'Are you telling me; my father is going to die?' and he said yes.

Looking back... he knew how it would all unfold. He knew what would happen, what we would do, the procedures that would need to happen and how my father would die. He didn't tell me all that, but looking back at small things he said and intimated... he knew and he was right.

I don't know why I could not cry, would not cry, did not cry. I was so calm. I looked at the photos he had taken of my father inside his body. I saw the minute tiny tumor seeds. My father had 3 blockages taken care of during this surgery. He had 5 endoscopy incisions. Two of the incisions were larger, because that is where the bowel was taken out and worked on. The intestine was not removed. It was kind of resected like a bow, creating a new path for things to travel through.

The race was on to get to chemo, to heal, to eat again... all of it to beat the tumor nodules/seeds from creating another blockage. One of the things the surgeon said was that surgery would not be an option again.

It is late again and I'll write more another time.