Monday, August 22, 2005

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.

Sunday, August 14, 2005

Mixed-Up Melange

Mixed-Up Melange

Ok, stupid mistake. My work is copyright and may NOT be used or reproduced without my permission.

I'm a little tired and pre-coffee this morning.

A Reminder

Mixed-Up Melange

I am reminded by a friend to say that my writing is copyright and may used or reproduced without my permission.

Stupid to have to say it, but unfortunately the unscrupulous ruin it for the rest of us.

Mixed-Up Melange

Mixed-Up Melange

August 13, 2005 -- Written in Retrospect

It has been nearly a year since I made my blog and I have felt unmoved to write. One inciteful individual sent me a response as to why we write stating that it is an individual's need to be heard. I have given this a great deal of thought. Another friend views it as an individual's right and ability to be heard that makes the opportunity of blogging unique. He likens it as a revolution in the way that the printing press brought the common man the printed word and it was no longer held within the power and purview of the Noblesse and Church. Philosophy of the blog.

At any rate I have been sitting here and considering what it would benefit me and given this year it might be good. My life in many ways has exhausted my friends. They have stood by me through the worst of what my life has offered me and now I do not want to burden them, but I feel a need to communicate, to talk, and to share. And if you who read this feel like you think I'm sappy, self centered, or boring you can go to another blog. Some are very entertaining.

My life in August was wonderful. It was happy and full. I even remember wondering how life could be so joyful and if it would always be so. I could not envision life being less or presenting us with a problem. I think the act of questioning this was the beginning of realization that something might happen. I was doing some initial sketches for a tapestry I wanted to do. It is a stream of consciousness type work. It started with a face and then with movement around the page and then with 2 more faces. I was thinking creation and came up with three fates and one was cutting a string. I was somewhat afraid and I stopped working on the project. It worried me that it had appeared.

In July my father told us much later he had not felt well, had started losing wt. My father was never a heavy man. He had always been healthy and carried a good wt. He went to a spa in mid-August where there was very simple pure food, no alcohol, and mild exercise. He lost 20 lbs in two weeks. This should have been a warning sign. This is not normal or healthy!

At the end of August my father was supposed to visit me after a business trip. He called me and told me he had to get back home and could not make it. I later found out he had thought he had experienced a terrible terrible painful stomach flu or had an ulcer. His G.P. at the time being young... did not tests, but prescribed a strong ulcer/antacid type medication. Later, One of his friends commented on his wt loss and told him it was not normal and that something was wrong. My father laughed even when sorely pressed by his friend and said that nothing was wrong.

In mid October we had a family wedding and there was so much joy. We were all so happy to be together and we enjoyed eachother. The only thing I noticed was how thin my father was. I asked him about this and he told me he was as thin as he had been in high school. I told him I thought he was a little too thin.

About 3 weeks later my father was hospitalized with some kind of intestinal blockage. About 2 weeks after that we knew that he had pancreatic cancer. I have felt since then that I intuited a message and the message was about life changing and the shifting of places that occurs through the passing of time.

I want to write about my time this year and remember it. I'm going to share it and it is my hope that it will be helpful to someone. I will tell you that so many times I felt alone. I knew I was not, but my life was turned completely inside out. I will say that I am not a fundamentalist, but God was with me and sometimes a moment of prayer where no words could express, but I just felt and tried to be open would help.

Dad went into the hospital in mid October 2004. The Doctors tried to get the blockage to go away with less intrusive methods. He needed to have an endoscopy done to determine what was causing the blockage. An endoscopy is where a small incision is made and a little camera goes in to have a look around.

I went down to the surgical floor with my Dad and I had to stop at the big doors leading into the 'no visitors - Dr's and Teams preparing patients' area. I had to leave him and I was so afraid. I was 42 and he was my big strong father and things were happening I could not bear to think about. I leaned over him and I smiled and I told him I would be waiting and how much I loved him. He had lost about 30 lbs by this time and he was seriously thin, but to me he was still my strong and handsome father, who was impervious to bad things. Nothing could go wrong and he could never die. And yet... I knew he could die in surgery. I was scared. We all had laughed off the idea of cancer. We all thought it was diverticulitis. It would have been wonderful if it was.

Dad went through the big doors and I was told to go to the surgical waiting area. My sisters could not be there with me. They have small children. Mine were 9 and 12 and they were on the opposite coast. My amazing friends were picking them up after school, feeding them snacks, monitoring homework, and taking them to soccer for me. Devotion and love. I can never repay them for this year.

I was in the waiting room. I was waiting, sitting, not daring to go anywhere. I was alone by myself and my father was upstairs being photographed inside his abdominal cavity. I cannot tell you the loneliness of a waiting room. I cannot tell you the fear. The human imagination is an amazing and powerful thing. It is better to focus on something. Reading was right out. I am a fiber person, but the usual spinning and knitting were right out. My hands were too shakey. I had a little notebook (something my father had always kept) and I took notes in it, guarded telephone numbers, and reminded myself of things... all surrounding the subject of my father and his life. I dug through my bag of books, knitting, spinning, waterbottle and snacks of nuts to find my little notebook. It was a green spiral 5X7 notebook. I opened it up and I wrote out the 23rd psalm. I wrote it out twice as I remembered it and then I read it over and over again. In my state of mind I could not say it in my mind without reading it from a page. I read it for hours and I believed it.

In our current culture we don't really understand what a shepard represents to a sheep. We don't know the total dependance of the sheep upon the shepard. What is a rod and why does a shepard use a staff. What does it mean when a shepard makes a sheep lie down in green pastures beside still waters. Consider what peace of mind is given to the sheep, because he has a shepard. It is in the worst moments of our life, when we have to be responsible for people who have been responsible for us or when we believe we are going to fall or fail or not be able to go on that the idea of peace of mind and someone caring for us is seductive, cherished, craved. When we have to be the shepard it is a hard thing and if we can find solace in finding a divine power who can be our shepard some of the burden is lifted if only for a while.

After many hours the surgeon came out of the elevator and came to me. He wanted to sit down and talk. I had been so stressed and filled with anguish. I could not believe the calm that came over me. I could not believe the smile and the motherly feelings I had for him. I know he was older than me, but none the less I wanted to care for him, because I knew he didn't want to tell me what he saw.

So Dad's surgical doctor told me that he had looked inside my dad in his abdominal cavity and his intestinal area in specific to find the blockage. He had found 'tumor deposits', 'tumor seeds'. He had found them on the abdominal wall and he had found them in many places on his intestines. Although, they were extremely tiny, the tumor deposits were compressing into someplace on his small intestine and it was causing the blockage. He told me that it was definitely cancer.

That word is a hateful insidious word that we all despise and fear. I felt the cushion of the seat under me and I looked into his blue eyes. I said, " It must be very hard for you to tell me this. I think you are doing a very good job." This surgeon is a surgical oncologist. The gastroenterologist must have suspected what was going on. Doctors at this point will not tell you everything. You have to craft the questions in non-emotional medical terms. At that point I didn't have any medical terms to go on. That came later. I asked him if he had biopsyed the deposts and he said yes. He said it looked like adenocarcinoma. Adenocarcinoma comes in several flavors, but I didn't know that at the time. I now believe in hindsight and seeing the whole picture that he knew what kind of cancer it was. It looked almost textbook from what I later found out.

I believe I was in some kind of shock. I was kind of mentally floating, asking what questions I could. Dad was in recovery and it would be two hours until I could see him. I was ready at that moment to handle it all. I was not going to tell my sisters until later. My Dad had to be told by the Doctor. We had to get the biopsy report...we had to, we had to , we had to do ..... something. It is being active that keeps us sane. Inactivity leads to breaking down. Somehow one has to find restful activity so one doesn't burn out and so one stays same at the same time. HAH, well, easier said than done. Wisdom in retrospect... I hope it helps someone. A quiet walk was all I was later able to muster on sketchy regularity.

After he left I just started to breakdown. I had two hours to wait until I could see my Dad. Two eternal hours. I called a friend at home and broke down and cried. Moments after I hung up my therapist called me. Somehow he intuited the moment and called at one of the worst moments I could ever have imagined. Later it would be more painful and terrible, but at that moment it felt like every awful thing from my life didn't matter and that the depth of darkness could not be more than in that time in the waiting room. My therapist is an amazing person. He has good sense, compassion, and he can reach into a dark space and provide a lighted tunnel to another place. The thing he told me that sticks with me almost a year later is that I did not and should not bear this burden alone. He told me to call my sisters, that they should be there with me and would want to be there with me. There was more said that remains with me as a sense of comfort and some kind of guidance that I did not have for myself.

I called my sisters and told them both to come to the hospital. Both of my brother-in-laws came with them and I was glad. When I told them; my middle sister (I am the oldest) was like she had been physically punched in her middle and she semi fainted into her husband. It is not so dramatic. It really does happen. It is like we are being beaten to have our world so threatened and so beyond our control. The Surgeon re-appeared as if on cue. He came to say we could go up in 30 minutes. My middle sister interrogated him. She really hoped I had gotten it all wrong and was aggressive in trying to prove it. I wish I had mis-understood, but the surgeon repeated what I had relayed and the verdict was still cancer and it was very very dangerous. We understood that immediately.

My husband was not there with me. My husband was holding down the fort at home and helping me to be with my father. There was no one to hold me. No one for me to physically lean on. I felt a need to be strong again and I did not break down. I told myself I was a rock, I was a rock, I was a rock. I would not break. I would be strong.

There are so many little details I could write. One of my little nephews wanted to run around. We needed to go upstairs. We needed to pretend everything was fine. The surgeon would talk to my father in the morning when the anesthesia had worn off and he had rested. We went upstairs. We kissed our father. We held his hand. We smiled. He had cryed from the pain and there were tear tracks on his face. My heart already breaking, broke again and again. How much I loved and love my father. How much I felt the depth of all the love I could bear and all the threat against my father, that scraped at me again and again. How could my father suffer and be threatened?

That day and that night went so slowly by. The pain in me was a lump and also all encompassing. It was unbearable. But one has no choice and humans have the capacity to feel and bear all kinds of pain. I want to say that this year was about pain, suffering, death,parting; but it was about so incredibly much more and I do not have the capacity in one sitting to write it all down. So it will come out slowly and maybe I can make some sense of it over time.

My sisters and I went home. I was staying with both of them.. sort of splitting myself so that both would have a chance to have me with them. I went home with my middle sister and we had to make some decisions. We had to call his sisters and a couple of his friends, but we also knew our father did not want people knowing he was sick at all. He always downplayed these things, but we could not lie to our Aunts and our adopted Aunts and Uncles, our father's closest friends. So we called them and we told them what we knew and what we didn't know. We exhorted promises not to tell our cousins to keep it all very quiet until Dad had been told and until Dad talked to them. This turned out to have been a very good decision, because sometimes a person can't say a thing and yet wants you to know. They don't know how to tell you, how to put into words in this case that your life was being threatened.

My Dad was a person of amazing optimisim and action in the face of the most difficult situations. He had beaten odds most wouldn't believe. Part of his method was a wierd outward denial with an inner truth and positive determination to move forward in an optimistic way. It worked. Sometimes it was frustrating to be on the other end or to watch, but it did work for most everything and everyone with him. He was like water dripping on a stone. He was stubborn and didn't give up. He was long term in his goals and in his fight. Dad was many many things.

The next day, we visited the hospital. Dad had been visited by the Surgeon early in the morning and he was silent, pre-occupied; mentally - physically - spiritually in pain. His mouth and cheeks moved like he was chewing on something... a cud... a problem and his eyes frowned and I felt like they were watery almost crying. He was a man facing something he denied was there and that was his own mortality. Probably if I guessed, why was this happening, how could it happen, it wasn't possible, and how will I tell my daughters.

My youngest sister is not actually his daughter. My parents were divorced when I was five and my mother remarried and had another child with her husband, my step-father. That child is my sister, 12 years my junior. She was amazingly close to my father and he loved her incredibly much.

We three were in his room and we rotated the three of us, two of us and then my middle sister took my youngest sister away and I was left there. I mostly stayed every day all day with Dad at the hospital, when I was there.

I considered my father. He would not talk to any of us and he for the most part would not look at us. This had gone on for several hours and finally I decided to dance around the issue a little and perhaps make it easier on him. I said, " You know, I had a long talk with your Dr. last night." "You did?" "Yes, and I am completely aware of what is going on." "You are?", "Yes, and so is L. and so is M.". This is practically verbatim. It is clear in my memory like a movie. And as I looked at him he seemed less fretful and as if a weight had been lifted. 'How can I tell my daughters I have cancer?'. It is a horrible burden to consider and an awful weight to have to tell others particularly your children, who believe as a matter of course that you, their parent, are immortal.

So it was in retrospect good to have told our Aunts and Uncles. Truth is better than covering it up. Covering it up leads to even more of a burden and more stress. Eventually, one has to uncover the burden and bring it out into the light of day. Nothing or precious little stays hidden forever. I have found through this process that more openess is better than less. The question of how, when, who, and how much are subtlties that must be considered. A steam roller of truth is not useful and is often destructive where constructive is needed. Tact, diplomacy, truth must be considered.

That is all I am going to write tonight. It is long, written in retrospect and 20/20 hindsight. It is the first chapter.