In the past two weeks Katie has been to emergency three times.  I don't like emergency rooms.  In the last year of my mum's life I spent way too much time in emergency rooms.  In the last three weeks of mum's life we went to emergency half a dozen times I think.  That was two years ago and in my mind the two were getting mixed together.  Katie, Joseph (her caregiver) and I spent all day in emergency on Monday, waiting to see a doctor, waiting for test results, waiting for a room so the doctor could cut into the abscess on Katie's wrist.  The next morning when I checked on Katie her hand was worse, swollen and more painful, so back to emergency.  She's now on IV antibiotics and doing well.  I am so thankful.

I'm scared my daughter will die.  I'm even more scared that her death will be a relief.  Or I'm scared that my heart will be so badly broken by her death that I will never recover.  These are the thoughts I've been having this past week. 

There's more I want to write but I'm worn out.  My second friend with cancer, also a Shirley, is now in the hospital dying.  I wrote her husband an email this evening telling him much I enjoyed working with Shirley. She is a kind, gentle soul with a wonderful sense of humor.  I saw her last week at the Cross when she came in for a scan.  I gave her a hug and I still find it impossible to believe that she has only days left. 

I'm tired of winter.  Tired of cancer and death.  Tired of illness and doctors.  Just tired. 

Reasons why I want to marry the big guy.

I love him.
I like him.
He makes me laugh. 
He farts in bed when I'm sad, just to make me laugh.
He holds me when I cry.
He hugs me every single morning and anytime of the day after that.  He is an awesome hugger.
He's smart and interesting and a very deep thinker.
He's logical.
He's stubborn, as stubborn as me.
He's patient.
He's kind and compassionate.
He's all bark and no bite.
I know he will always have my back.
I like living with him, working with him and traveling with him.
He likes my cooking.
The look on his face when his granddaughter sits in his lap.
Watching him hold hands with the cat.
Watching him play tag with the cat.
His big heart.
His old soul.
His bruised and battered heart.
That gentle, scared part of him that he protects so fiercely but which he lets me see.
He worries about me.
I worry about him.
His laugh.
I trust him to tell me the truth, even when I don't like it.
I trust him with my heart.
He accepts me as I am.     

One of the big guy's images.

I visited my girlfriend on Sunday evening.  I made crème brulee and wanted to drop it off for her. Her husband invited me in and I walked into the family room.  I saw an old Chinese man sitting on the coach, except it wasn't an old Chinese man, it was my girlfriend.  I didn't stay long, their dog was sick and my girlfriend wasn't feeling great.  When I got in the car and drove away I couldn't stop crying.  I couldn't believe I didn't recognize my friend. 

I don't know how to let go of someone I love who is not part of my family.  I can't park myself there.  I'm not her family but I want so badly to take care of her, to take care of all of them.  When I was there on Sunday evening her three girls were all sitting in the family room as well, freshly showered, in their bathrobes.  What was so comforting for me was how peaceful it was there.  Three teenage girls, a sick dog, a sick mom and a father who's taking care of everyone and their home still felt peaceful.  I guess I need to find a way to say goodbye that doesn't invade my friend's family's space. 

Tomorrow I have a job interview in Nuclear Medicine.  The job entails organizing and arranging care for a group of patients with neuroendocrine tumors.  The clinic/hospital that I work at is one of only three in North America that provides lutetium therapy to patients with neuroendocrine tumors.  The job would allow me to grow and learn as a nurse.  I've been studying and doing research for a couple of weeks for my interview.  I really hope I get the job.

I ran into my girlfriend at work today.  When I talked to her yesterday she had mentioned that she was starting a new chemo drug today but I forgot, or rather, I got so busy that I forgot.  And when I went on my break, there she was, sitting near the front door.  Her husband had dropped her off early on his way to work. 

She's so tired.  Tired of appointments.  Tired of having cancer.  Tired of chemo.  Tired of making other people sad.  Tired of feeling tired.  She looks worn out.  The chemo isn't working.  I'm pretty sure this new chemo won't work.  Actually that's not true, I'm very sure the new chemo won't work.  I know the stats, I know her prognosis.  I asked her if she wanted to continue on with her chemo and she said she wasn't sure.  When I asked what her husband said, he said that it was up to her.  Her three girls want her to continue with the chemo.  Her girls are thirteen, fifteen and seventeen.  I don't know if they understand what they're asking of their mother.  Teenagers still believe in immortality. 

I told her to try it if she wants.  She can always change her mind and stop the chemo.  I know I wouldn't continue on with chemo.  I'm a chicken shit.  I hate suffering, physically or mentally.  Palliative chemo involves both mental and physical suffering.  My friend knows she is dying but still can't believe it I don't think.  I don't think I could either.  It's one thing to say, yes, we're all mortal and another to say, this is my last Christmas, my last winter, my last birthday. 

She also knows how much suffering she's causing all of those who love her.  We all know she's dying and we're all grieving.  A part of me would just want to get it over with.  Another part of me would want to hold on to every last day, every last smile, every last hug.  I'm guessing that's how she feels as well.  The worst part would be knowing that the only thing that will ease the suffering of those who love her, is her own death.  We will weep, we will remember her and life will go on, our grief slowing becoming a part of the fabric of our lives.  How do you reconcile all of these contradictory feelings and emotions?  And what do I say to her? 

It's the start of a new year.  I'm off today, have been off for a week and I've had a chance to catch up on odds and ends.  Last year I updated my will.  I've been meaning to write a personal directive but have put it off because well, it makes me think about my own death.  But today, the first day of a new year, I had time.

I've been nurse for a long time.  I've seen many people die, some deaths were good deaths and some were not.  I vote for a good death.  Both of my parents had relatively good deaths.  They were both afraid to die but both died peacefully without medical interference.  When I was a young nurse I had a patient, probably about my age now, who was admitted with advanced metastatic breast cancer.  She hadn't seen a doctor and her family didn't know about her cancer until she was admitted to our unit.  When she came to us her breast was hard and green.  Two days later she coded.  I was there while she died and then while they coded her.  Her family was in shock and I have no idea how they coped with their loss.  All I remember is that the doctor running the code stopped it when she read the patient's chart, but not before the patient had her ribs broken from the chest compressions and a cutdown line put in her arm which left blood all over the bed.  When the code was stopped, the patient continued to have agonal respirations which made it look like she was still alive, even though her heart had stopped.  It was brutal and undignified.  It's also part of the reason I never worked in ICU;  it's the ICU nurses who respond to codes.

When I worked on an end stage dementia unit, virtually all of our patients were no codes.  Patients ate and drank until they either aspirated or stopped.  Aspiration leads to pneumonia.  Not eating or drinking leads to death.  These patients died naturally;  the way people have died for millennia.  When they were no longer able to eat or drink they died, peacefully. 

My girlfriend is dying.  She's three years younger than me.  We talk about her death sometimes.  She's not afraid to die but she doesn't want to suffer.  None of us do I don't think.  So this morning I set out my wishes in writing for my children and the big guy.  I don't want my life to be prolonged.  I want to be independent until I die.  I want to die naturally and peacefully, hopefully in my own garden or at least in my own bed.  I believe that this life is only one stop in my soul's journey and that my death will merely be a transition for me, not the end.

 

One of the big guy's images.  Pyramid Lake, Jasper.

We're heading there Sunday, except the lake will be frozen and covered in snow.  Today I am still in my pyjamas which feels rather decadent.  I ate cookies and bacon for breakfast and homemade spring rolls for lunch.  I had a good, rather long cry because my family was not together for Christmas and because my youngest daughter is still handicapped and doesn't understand that it's Christmas, or care for that matter.  And the big guy held me while I cried. 

I am one of those people for whom reality seldom meets my expectations.  I even have a little stone block on my bookshelf which says, "Happiness is wanting what you have.", and still I resist.

Right now the sunshine is streaming through the windows.  There is a hockey game on the TV and the big guy is gently snoring on the couch.  The cat is sitting beside the humidifier, staring intently at it, waiting for it to gurgle.  I get to spend everyday with the man I love.  I am blessed and still I feel unsatisfied.  It is getting better, but ever so slowly.  I try and fail.  Try again.  The mountains help.  When we're in the mountains I slow down and accept what is. 

Miss Katie's roommate had a meltdown last weekend and put her head through the wall, or maybe her foot, I'm not really sure.  Katie had a sympathy meltdown of her own because when Angie gets upset, Katie gets upset.  Katie has a permanent lump now on her forehead from banging her head against the wall or the floor.  She also has another lump on her hand because when she's upset, she bangs her hand against her teeth. 

I can't stop any of these behaviors.  I've tried and tried but they continue.  And now that Katie no longer lives at home I have very little day to day contact with her.  I see her once a week.  We go bowling.  We have lunch.  There is a lot of talking and a lot of signing and then she goes home. 

Katie is very well cared for.  Her caregivers are truly wonderful people who have the patience of saints but I don't know how her live goes.  I don't get to tuck her in to bed at night.  I can't make sure she has a poop everyday.  I can't make sure her teeth are brushed properly every day.  I do cook for her but I don't get to sit with her after her bath and have her lay her head in my lap while she eats popcorn.  I miss that.  I don't miss the constant vigilance required to care for her though.  Nor do I miss the feeling of being in prison. 

So Katie living away from me, for five years now, brings feelings of ambivalence.  I wish I was the kind of person who could care for her every day but I know I'm not.  I cared for her for many years and now I can't.  But I do miss brushing her hair and tucking her into bed.