Saturday, 31 January 2015

A family post.

It occurred to me yesterday, that I had never written about just what happened here at Chez Needles the summer that Mr Needles died.  It probably doesn't concern most of you, but it concerns me because in many ways this is the only record of me that will live, the only record of us that will outlive my memory and my children's memory.  Maybe, if I write it down, somewhere in the far off days, my grandchildren will still be saying, do you remember when Grandpa... 

And so blog, you are it.  I save this blog each year in a book and this very significant part of my life is barely mentioned.  You may not wish to read the whole story as it follows, but I need to write it. I debated keeping it private but the only way to keep it in the book the blog makes each year, is to publish it.   

Mr. Needles, Brian had trouble with gout the last few years of his life.  Every time he went hunting and did a lot of walking or changed his routine in some way, it would come with a vengeance.  He was pretty stoic about pain and rarely said anything except at night.  A blankets weight was unbearable when he was trying to fall asleep.  

In November of 2011, no earlier in the year, he had some odd things going on.  Weird things that looked like infections on his leg.  From knee to thigh, his leg swelled and became hard.  and then after about 10 days, it went away, to be followed by a painful something in his neck, for about 10 days.  This was followed by another something or other, though I honestly don't remember what it was.  I only know there were 3 things, each about 10 days, and then back to a second round of the leg swelling problem.  Doctors couldn't get a handle on it and they said if it comes again, come back. I wondered if something hadn't bitten him while he was on his trip to Palm Springs that year, some weird spider or other little thing. His gout that summer was really dicey.  He found that he had to be so careful making sure to drink enough water to keep the gout at bay. He got gout simply by going for a good long walk.  It was a hard summer in a lot of ways for Brian. The doctors claimed that his gout wasn't bad enough to require medicine but I have always felt they were wrong.

Along comes fall, and it seemed as if the leg troubles, the swelling and pink area of his skin getting hard were back.  Because it seemed to go away with only minor pain, Brian didn't worry about it.  Till the fever started and the knee swelled so much he couldn't get his jeans on.  Still he thought it would sort itself out, though he did go to his regular doctor.  The doctor said if it got worse to come back.  It got worse the next day and he went back.  A different doctor sent him straight to the hospital with a letter and the emergency was forewarned.  This different than his regular doctor said he had septic arthritis in his knee and the infection was out of control.  There were a few days where the doctors weren't sure they were done.  His infection did not seem to be responding to drugs.  It was a pretty scary time and Brian worried that going in again would mean that he would end up needing a knee replacement, a very real possibility.  A second surgery was scheduled.  After a terrible long day, things suddenly changed and the drugs got the upper hand over the infection. Brian recovered well, and regained full use of his knee.   He did so, just in time to go golfing in Palm Springs again in 2012.

Through 2012, everything seemed to be normal and good, as can be attested to by blog posts from that season.  The gout was more stable, he walked long and didn't have to worry.  He so looked forward to hunting season. But come fall, when I look back on it now, with the benefit of hindsight, he was tired.  I even said something to him, that I was concerned that he just didn't seem to be himself.   He said he just didn't feel like getting cold.  He thought it was just his age ganging up on him. I think my voicing something made him look harder at the changes he seemed to be having, and he went out and bought some very fancy schamancy long johns and an equally schmancy undershirt to stay warm.  And he started looking forward to getting out again.

And then, his other knee got inflamed and swollen and we both knew what to do.  We went straight to the Misericordia where his surgery had been the year before, and yup, same thing, different knee.  We hoped that it would go faster and smoother because this time we did not wait.  In most ways they did.

While he was in hospital, they did every kind of test that a person should have by the time they are 60.  The scoped him and tested and ran a dozen different things.  His high point was the colonoscopy - but then isn't that everyones high point?  The doctors did tell him that he had a faint shadow on his liver, but the tests that they did were unrevealing and they felt that, with his history and his age, it was a sign of slightly more than normal wear and tear, but that it was normal.  

Brian was eager to get back to physio and to couldn't see any reason he wouldn't make his golf date at Palm Springs in March.  Only he had to work so much harder at getting better.  Nothing was quite the same somehow and he often spoke of how tired he was and yet it wasn't a tired that seemed to resolve with sleep and resting.  He made it to golf but he said that he had to stop play in the 3rd round because he was tired and his back was hurting.  He thought it was muscle strain because of favouring his knee more than the previous year.  He skipped a round and rested. That and a brace put him back on the course and back golfing.  When he came home he was tired but a very very happy man. He loved those golf trips.

In April, as the season for farming came close, he went out and worked on the tractor and the harrows.  He did all sorts of farmerly things to get us in to the garden.  He had to put a new battery in the tractor, and hurt himself.  He was pretty sure that he pulled muscles or cracked a rib somehow but he seemed to bear it.  At the same time, that back trouble from golf season seemed to come back, or at the very least, be present more or less all the time.  He started looking for a new mattress.  Surely that was the trouble.

In mid May, he went fishing with his dad and brothers as usual and came back hot to trot to get out to the Rock Lake and go camping. He was anxious to get to the lake.  I confess, I got cranky.  We had to get the garden in before we went to the lake.  It would be too late for so many things if we didn't.  I really just felt we had to.  He finally agreed and went out to work the garden up and get it ready.  

Even though he wanted to be somewhere else, he always seemed so happy when he came home from the farm.  He talked about how he had forgotten how good growing things made him feel, about how connected to the earth he felt when he did.  It was a joy and he started talking about moving closer to the farm and about retiring and playing farm. He talked about sitting and having coffee in the sun in the mornings, and reading the paper. There weren't enough hours to sit and have a relaxed coffee when your work day started at 7 and finished at 5.  And he talked about going south to escape winter.  He was a simple man with simple dreams.

Through April and May and all the business the farm things added, he started going to bed earlier.  I teased him a few times that he was turning into me!  I remember having an internal debate.  Should I be worried about this?  Should I talk to him and make him go to the doctor?  He hated when I fussed about him.

The weekend we planted the garden June 1 and second, we had to call one of our boys to help.  Brian's back was really hurting and he didn't think he could do the heavy work.  He did the watering off the back of the quad, and seemed to be doing ok.  Keith did all the heavy work.  Or as much as he was allowed to do.  Brian just couldn't stand watching at the sidelines and finally picked up a spade and helped with the potatoes.

We were planning on being at the lake by Wednesday but he wasn't feeling well.  Monday he came home from work early and Tuesday morning, he said his first knee was swelling and he wanted to go to the hospital. They kept him but the surgeon he saw, looked at his knee and said he didn't think that the knee was the problem.  They did go looking to see if it was a knee problem, but the surgeon was right.  It wasn't.  A raft of tests and looking at every possibility, and the following Tuesday, a doctor told Brian what they thought was going on, but they were waiting on confirmation. 

Brian called me at home and told me to sit.  I could hear what he was saying, that the doctor said that if it was cancer that it was late stage and that there likely wouldn't be a lot they could do.  Over his voice, as he spoke, I remember thinking 'is this the day that life will change?'  I told myself to stop being a drama queen, things like this didn't just pop up and that we would work it through like we always did in the tough times.  I went up to see Brian, and the minute I walked on to the ward, I knew.  I knew the awful truth. The nurses were too nice.  They could see where we were going and they felt for us.  How do you face this nice patient of yours and his family and stay the same.  They tried, oh how they tired, but truly, it showed.  They were so kind, too nice.  

I told the boys what the doctors thought was going on they stayed stoic.  Well, Scott, not so much, but Keith and Anthony stayed pretty calm.  Our oldest, Anthony was there when the doctors confirmed what it was.  We had appointments set up at the Cross for us, the cancer treatment center here,  and Brian came home.

4 days later, the results were in. We knew the beasties name.  We could google.  I did. Brian did not.  I spent a lot of time in my study crying quietly, desperate.  Signet Ring cell adenocarcinoma.  The doctor corrected himself, that adeno was not strictly necessary.  The carcinoma part covered it all. It is how I remember the name.  It has a certain rhythm to it said that way.  

Signet Ring cell adenocarcinoma. Rare.  Little known.  The bare facts of it are still there today.  One real study.  "  In a group of 154 Japanese patients the overall median survival time was 12.7 months and the 5-year survival rate was 9.4%."  

My heart has never really gotten past that.  9.4%  Where was my little corner of hope?   

I went to a regular Tuesday knitting group.  I had to get out, and find some kind of solace.  I broke down and started crying. There was that look of stunned disbelief on my friends faces when I told them there was no hope.  That disbelief was only a mirror of my own.  

Brian though, never gave up.  Each day, he was determined to see the good.  He said, that today, his chance of dying was exactly what that of any person.  Anybody could get up in the morning and be hit by a bus, he would say.  He stayed so strong and he carried me as he always did.  

He had some amazing treatments, palliative radiation at the Cross, to deal with the pain of his back, which was caused by a cancer in his bones in his spine (that nagging pain in his side, another.  9 major spots of bone cancer in all and several small ones) and for 10 days, he felt pretty good.  Really good in fact, just tired.  We had company and he loved having our families around.

We took a trip over to Cabelas, to use a gift card one of the boys had given him at Christmas.  he wanted to buy a third seat for his boat.  He thought that the boys would need that when they went fishing.  It was a drive of 30 minutes and then to the far side of the store, and then home, and after we got back he slept for almost 15 hours straight.  So very very tired.  

He came down with a fever, a really really high fever, and I was so scared.  He also said he had an odd thing happened, where he couldn't move one side of his body for a few minutes, a small stroke he thought. He told me he though he had had one before but it didn't last long enough to be sure so he never said anything.  I talked him into going to the hospital.  I think he was worried that it would be for the last time, and it was.

It took 5 days for the fevers to go away but then he felt better and more himself, just overwhelmed by the tiredness.  He did not seem in pain at all.  He didn't take anything more than an occasional Percocet but even that was more so he could sleep better through his room mates night time ramblings.  We had a lot of fun with some of those old guys.  Old in comparison to Brian anyway.  He was the youngun in the bunch by far. 

In the second week we were there, the doctors had him on blood thinners and the stokes seemed to stay away.  Third week, he had one that took longer to go away but by the second day, he was back to himself.  He stayed in his regular clothes and had occasion to be yelled at by the nurses who didn't know him, for using the patients bathroom.  They thought he was a visitor.  He really didn't look like he was sick at all.  He wanted to get out for a bit, badly.  He really wanted to go over to the mall (West Edmonton) to see a project he had worked on that he received a very high compliment on.  He liked doing good work.  Brian didn't think that he could stand the crowds though so we went home. 

He had a nap, and I asked him what he wanted for supper.  He didn't know so I made hamburgers from venison.  I choppped onions and put them in his.  Big chunky onions just like he liked.  It was a running joke between us.  He would eat burgers without, and if needed, I picked out the onions from mine.  He wanted to come to the table to eat.  He sat, not in his usual place, but by the big window, so he could get the sun and see the yard and look in the bush for the deer, which often passed through on quiet afternoons.  He ate what he could, about half, and then said it was time to go back.

I think he really wanted to come home.  I wanted him to, but this visit, for both of us, made it clear that it was not something that was possible.  His back was hurting some and he felt less pain with the raised head of the hospital bed.  I wanted him not to hurt.  We went back.  A bittersweet sort of day.

A couple quiet days and then, on a Thursday, he had a stroke that it took him a long time to come back from.  There were more over the weekend, and though he could not speak, he was asking me with his eyes to stop all the treatments and let what would happen, happen.  I knew that the boys would have to be in on this decision, so I called them all in and we took him off all treatment.  It was something Brian and I had disscussed.  We knew our wishes many years before.  We both knew our hearts, we just never thought we would have to do it.  

His oldest brother Russ, came too.  I think there were some concerns that we weren't doing enough to cure his cancer.  It was after all, only a few weeks and up till the strokes, he looked so very good. The strokes were a direct result of the very large tumor that resided there.  His blood was no longer able to clot properly because his liver was no longer working correctly.  It was so surreal and I don't think his brothers had accepted what was going on.  Russ went in to talk to Brian, snuck in right after the nurses were done and asked him straight.  Russ said  he held his hands on both sides of his face and asked Brian if this is what he wanted.  He said Brian's eyes told him very simply, that yes, it was his choice, his wish that this part go fast and that we not try to stop it or slow it.  I think Russ and Brian's other brothers needed that, and I think that my boys needed to hear it from more than me.  We sat at the quiet far end of the hall, sat on the floor and talked and cried a little and when the room and Brian were ready for us, we went in and sat with him for a while.  Brian looked so at peace with it.  He was happy and in good spirits. He slept a little and looked more rested than he had for a number of days.  

I think for him, the choice had great meaning.  He might now have a better chance than an average guy of dying today, but he was going to make sure that his going was on his terms.  

That last week, but for Tuesday night, I was at the hospital all day everyday.  We hung photos of everybody Brian loved on the wall.  Kids pictures and family and memories of hunting and fishing and grandchildren.  Cassie and Isaac featured large on the wall. His brothers and sister and his mom and dad featured large.  He loved it.  Every day somebody brought in a few more till most everything he could see was covered with love.  The strokes results seemed to ease and by Wednesday he could answer questions, though he was often confused.  Thursday he almost could hold a conversation and we thought about taking him downstairs to the hospital garden off the dining room.  In the end, we couldn't.  The hospital was moving patients and the elevators were not working well.  Scott and Amy came and told us that we would be grandparents.  Brian was so very happy to know this. He treasured our Cassie and he loved Isaac and knowing there was a new grandbaby on the way, meant the world to him.  It was a good day a very good day, the best.    

Of all the things those last days, it was the hallucinations that were so hard.  Thursday evening, they started happening more often and the fear got much much worse for Brian.  A curtain would move or clouds crossing the sun out the window was enough to set one off. No human should have to live through this inexplicable terror.  Thursday night was the most awful night of my life and I have no doubt, of Brian's too.  When your liver stops working and you are being poisoned slowly...these are hard things.  I told his brothers on Friday morning, he was past visitors.  I tried to make sure the boys were kept busy and encouraged them to take a break.  I didn't want them to have to see this terror in a man they adored who was usually so strong.  Brian didn't want anyone to see him so like that, and my job was to keep him safe.    It sounds like so little when I try to write it but those hours were so truly awful.   

Sometime through that night, I prayed that this would be over quickly.  I begged Gods forgiveness but if this was what had to be, then make it mercy and give Brian a speedy death.  It was what Brian wanted.  We talked about that as his mom's dementia got worse.  He did not want to have to live through  the long sorrow of something like that.  So I prayed and though I am certain God forgives me this, I am not so sure that I forgive myself.   

As Friday passed, we gradually seemed to find our way through the worst of it.  When he had a hallucination, I would talk with him calm, and clear, and tell him he was safe and that he should focus on my voice and my words.  Over and over again.  As he slipped farther and farther into that world where I could not follow, talking to him became so important.  It was a comfort to me that he seemed to find some peace in my voice.  

About 3 a.m., Keith, our second son came in and told me to go home and sleep.  He promised to stay with dad.  I told him about talking to dad and that if he could listen carefully, and we could try to follow the things dad was seeing. It seemed to matter to Brian that we understood the fear and he calmed faster if we were with him in that vision he saw.  I told Keith that if he recognized that it wasn't my voice, he should tell dad that I had just gone home to pack the van, that if it was time to go to the lake, he should go ahead and that I would follow shortly.  

I didn't think I would see him alive again.  I went home and did try to sleep but I couldn't.  I showered and went back.  By the time I got there, Scott our youngest was there.  We let Scott stay with dad for a moment and Keith took me out to the hall and he was almost crying.  He was so overwhelmed with what his dad was going through. What could I say.   He did say that what I told him to tell dad did comfort him and that the talking made it easier somehow.  You could see him focus on our voices and relax as the hallucination passed.  I tried so hard to spare them that. Anthony saw several at the very start.  Scott saw some of the very last. 

The boys came and went through the day.  Olga came with our sweet Cassie, Amy came.  Only Isaac didn't come.  A four year old is old enough to understand just enough to be scared and that wouldn't be right.

We knew we were at the end.  Brian did not communicate at all on Saturday.  I hope with all my being that he was not conscious through it.  At that moment, it was my only prayer, that he was not aware of this.  We talked with the nurses.  In their judgement and their experience Brian was still a ways from death.  Keith, Anthony, and Olga took Cassie home for a nap and for some food and a bit of respite.  I sat talking with Amy and Scott. Brian's breathing was getting really raspy  and harsh.  We called a nurse and she gave him a shot to dry his mouth and slow his oral secretions. 

The nurse left the room and then Scott went over to kiss his dads forehead.  As he stood up, there was a change in Brian's breathing.  Instead of laboured and harsh he was now breathing with long seconds in between, 4 long breaths.  And then utter stillness.  An age of endless waiting for what was never going to come again. Scott and Amy ran for a nurse, and things moved fast, though I knew that it didn't matter any more.

Brian was gone.  It was so peaceful at the end,  so calm, so quiet.  He did not hurt anymore and that was all that mattered.  

8 weeks from the day he was diagnosed to the day of his passing. They never found his primary cancer, only the bone and liver where the original had metastisised to.  I used to think that mattered, but it really doesn't.  Knowing where it started wouldn't have changed anything.  I still feel shell shocked. I still am overwhelmed.  

The rest, well if you read this far and read this blog much at all, you have seen the rest.  You go on.  You get by.  One foot in front of the other each day as it slowly passes. This is the only way to honour his life, to honour the things he built, and the man he was.  My duty is to remain to tell his stories to our grandchildren, to love them twice as much because he can't do it himself.     
That is what was.  The summer of 2013, the way it went.  

This blog is Needles and Things.  This has nothing to do with needles so it is quite clearly a Thing and what a thing.  A sad thing, but it is part of life.  You cannot have a beginning without knowing there will be an end.  The only thing you can do is enjoy the middle.  Brian had his ending and that I am still here is proof that I am still in my middle.  I live each day for my sweet babies and not so babies.  They are everything to me, be they born of my blood or arriving partly grown.  And someday when they are old, and closer to their ends, they might want to know what happened.  

I plan to write more stories of Brian for my kids.  You are welcome to come along for the ride if you like.  Its not a big story or a heroic story, it is just some stories from a life. I don't want the man I loved to become only a line in a family tree.  

I started at the ending, but really that ending is a beginning.