Life is short, live it while you can

Ashley spent the rest of the weekend with us.  Bill started running on the treadmill. He was running for his life and she was afraid he was running away. She sat in the spare bedroom watching him run, questioning him, "why."  She was too young to understand that he thought he could beat it if he just got in better shape.  He was six four and weighed 205 pounds the day he was admitted, he came home from the hospital weighing ten pounds less. He became obsessed with weighing himself twice a day. He never weighed himself before, but he was going to fight this head on.

We had an appointment with the oncologist on Tuesday, January 11, 2005.  He was anxious to start treatment and get better. He woke up in good spirits.  The doctors at the hospital had informed him he had up to eighteen months to live. They had assured him there were treatments that would help prolong his life.  He had had a few days to process this and was feeling positive about the outcome  

We entered the examination room, waiting for the doctor to arrive.  He was up on the table and I was leaning in with my arms around his neck, his arms, encircling my waist.  We were laughing and kissing, enjoying the moment when the doctor opened the door.

I had not been present at the hospital when the doctors informed Bill that he had up to eighteen months to live.  I had not spoken to the doctor's with regard to what procedures had taken place. I trusted Bill knew.  I should have questioned the doctor the  night he discharged Bill as to what occurred that week.  When you are given news of that magnitude, you shut down.  I did not understand that until we were in the exam room that day.

The doctor that had seen Bill in the hospital was not a specialist.  The doctor we were seeing today, was an oncologist. He sat down and explained the diagnosis, the treatment plans and the prognosis.  Bill was alert and inquisitive.  He wanted to know when he started chemo if his hair would grow back, would he be able to have sex, what the side effects were.  One sentence changed everything, "Bill, this is a death sentence."

I saw my sweet William shut down. All hope drained from his face, his eyes glazed over and his body slumped.  He stopped listening and I became his voice and his ears. He was in stage four of the cancer.  There was little to no hope for his recovery.

There were treatment centers that he could go to, but insurance did not cover the costs and the minimum charge was twenty five thousand dollars.  Here sat a man, on the brink of bankruptcy and the doctor suggesting he take his life savings and "give it a try."  Perhaps this doctor had the money to seek this miracle treatment at some center that insurance companies did not approve of, but the patient in front of him, did not.

His blood tests revealed increased liver enzymes and so he was not a candidate for chemotherapy. The liver needed to be functioning in order to rid the body of the chemotherapy drugs and his was not. The doctor had hope that they could decrease the liver enzymes and treatment could begin.  We were to follow back  up with him in a week.

Bill didn't say much. He kept losing weight. He had a hard time keeping any food down, yet his stomach was bloated.  He was constipated and he had tremendous back pain.  I would leave him in the morning to go to work and worry about him all day.

My office was bare when I got back to Indianapolis.  It was a start up operation. The company had just acquired a new contract for the assigned risk workers compensation claims in Indiana.  I was literally waiting for work to come in the door.  My desk had been delivered and so had the receptionist desk, but beyond that, nothing.  The computer had not been delivered, telephones were in, but no one was calling.  I sat and read manuals.  I put together a printer stand.  I put together a table for the break room.  I had to go out and buy a refrigerator and microwave for the office.  People flew in to teach me the computer system, and no computer, so we sat on the floor and looked at pictures of what I could anticipate.  There was nothing for me to do.   I was like the Maytag repairman, waiting for someone to get hurt so I had a claim.

A week after we had been to the oncologist, Bill's stomach started to bloat.  He'd been out of the hospital for eleven days and had lost another fifteen pounds. We took him in to have the water drained.  Each time he would go in they would drain up to eight pounds and he'd feel better as the pressure had been relieved.

We had picked a date to get married, February 5, 2005. Bill didn't want to get married in January.  He'd gotten married before the day after his birthday,  we picked the first Saturday in February.

His family was a Godsend.  Every one of them contributed to our special day.  All I had to do was show up with Bill. His Aunt Carolyn reserved the church for us in Brick Chapel.  It was just perfect.  I had always wanted to be married in a small church and I finally got my wish. 

His father had owned the florist shop in Greencastle for years, he and Bill's brother Ned did the flowers and decorated the church.  My sister-in-law, Jonnan is a baker, she baked our wedding cake and made cookies.  My sister-in-law, Anita, is a cook at DePauw University and she coordinated the wonderful spread of food after the ceremony.  Bill's cousin's wife is a photographer, she took all of our wedding pictures and was kind enough to give me two sets, one with his oxygen tubes and one without.  He had another cousin who was in the tux business that measured and ordered Bill's tux.  And yet another cousin who is a minister and gave Bill his last rites. So much love and so much talent in this family. I didn't have to worry about a thing.  They had everything in order while I took care of Bill.

He had to be admitted on January 17.  There had been complications with stints that had been inserted during his first hospitalization.  I had no idea he even had them.  I really questioned the care he was getting.  No one seemed to have their finger on the pulse of the problem.

He was released from the hospital with morphine pills.  No one told us these can cause constipation.  Apparently some one should have made sure he had another drug for that, but they didn't and he paid for it.

We were always going in for blood work.  They would take blood, give us an appointment date, we'd come in and they would tell us they already had done that test or he didn't need it just yet. The first week he was out of the hospital, he was Bill, but by the second week when he had dropped another fifteen pounds and was retaining water, he was weak and in pain.

He was in the hospital the second time for a week and released. He was determined to get released so he could go to his bankruptcy hearing on the 24th of January.  He was released the day before his birthday, but he was not up to celebrating. He turned forty nine.  Two days later, he got dressed and headed to court. He didn't want me to go with him.  He said he got himself in this mess and he'd get himself out.

He was back in the hospital by the end of the week. His blood tests continued to support high enzymes and his kidneys were starting to fail.  We were going in to the hospital every three days to get fluids drained from his stomach.

I had taken him for his stomach to be drained when they hospitalized him the last time.  The stints were not functioning.  One doctor told me they had been placed incorrectly.  The doctor who did the actual surgery assured me they hadn't.  I can't say I believed him.  He had told me before the surgery that the procedure would take 90 minutes.   I kissed Bill good bye and told him I loved him as they wheeled him  in to the surgery room.  I spoke to the doctor briefly about the procedure.  Fifty five minutes later, they had placed the two stints and this doctor was on the run to catch a plane to Houston.

I kept the phones busy talking to all of his doctors, but no one really wanted to help.  You feel helpless in a situation like this. I knew there was no cure, but I was fighting to make sure he was comfortable and in as little pain as necessary.

They repaired these stints three times and things never got better.  I had taken him in for labs one day and the nurse informed me that they had done them the day before and forgot to tell me the appointment had been cancelled.  We still had to be there for him to be aspirated, but that appointment was two hours away.  We were in the "lounge" of the surgery ward waiting and Bill was  weak.  I asked them if they could find a gurney for him to lay on while we waited and they said they had none.  NONE! One of the largest hospitals in Indiana and they had no gurneys.  

When you want some  thing done, some times you have to be a little unconventional.  I cleared the bench in the waiting room and had Bill lay down there.  He used my coat as a pillow and his coat as a blanket. Within seconds, a gurney appeared and we were taken to the hallway where he could rest while he was waiting.  There is more than one way to skin a cat. I wasn't going to back  down to some clerk being too lazy to go find a gurney.

Every time he went in the hospital, he came out weaker.  In a month, he had lost close to fifty pounds.  I recalled the first day we went to see the oncologist, they wanted to take his height, he stood up against the wall and she told him he was six foot three.  He wanted to argue with this nurse about his height, so she measured him again.  He was like a child!  He stood up so tall and erect and she said, "Nope, you are six foot three."  He mumbled that she had no idea how to read the growth chart.  So many funny stories during a time that was so heartbreaking for everyone.