Here and Now

Throughout the night different people checked to see if I was okay.
Jim covered me up about 3. Femke stayed  through the night and helped me get up
and drink water and just sat and waited for the pain to subside'
Emily called out for me in the night. She sang and danced and kissed me alright all day.
Hils came and sat and nursed her tiny baby.

Tim for the first time in weeks collapsed and slept so deep nothing can wake him because he is not the only one here. The only one vigilant and caring. The only one responsible. He leaves work in 5 days.

3 times I just counted to see if it could be conquered. The pain layers were so deep it was like blankets.
Which got too hot and eventually had to be peeled away. Or until I could catch my breathing and stop
the tightening anxiety from the relentlessness of this pain. And I did. I know too much about my workings now that I can see the diagram of a human body and identify where it hurts. Defined by little dotted lines of certainty. And sometimes it abruptly stops. Completely. I do not move then.

Last night just as the sun was starting to leave us they packed me up and drove me to the beach. I was deliriously happy. SO perfect watching Jim and Emily paddle in the cold water. Listening to Hil and Jim call back and forth in Glaswegian lilting conversation. Tim smiling. Met neighbours. A carpenter named mark and Derek from the neighbouring Fire 'Hall. And we left. Me being lifted from my chair not only by Tim but by Jim, helped up the hill by two men and into the car.

We got back to Sweethaven to soft rain and frog song. We ate a supper almost completely provided from my garden efforts. Pasta, tomatoes, basil and garlic made into a sweet simple meal. Femke came and the wine came out and so did all she brings like laughter and light. And we were all so happy. I was covered up and drugged and fed and watered. One sip of this delicious and rich Bordeaux was all I was allowed but it was one sip from the crackling warmth of the room.

And Emily treated us with her version of Highland Dancing. She was astounded when she saw them. A herd of Fallow deer in full antler. "Oh Mama! Auntie Pat! The reindeer came!". She sat and felt the magic of Sweethaven in the last light. We all did.

I don't know if this is what it is now. But the beauty of it all still comes. Even in short gasps.

I am not alone. I am still here. I am fully in love with my life.

Today everyone wants to thread a needle or ten so I can try to sew despite this tremor taking over my movement. I can try can't I? And if that doesn't work there are still reindeer, soft rain and frog song.

The beach we were on. Bennet Bay, Mayne Island

Getting Interesting

Today will be interesting to me.
Neuromuscular Medicine is far more concrete and understandable than many of the mysteries I experience. They poke a needle or an electrical impulse in the body reacts . You can see it. A biopsy is done and you  know tissue is being gone over with a fine tooth comb.

It brought up all sorts of memories of playing with puppets and dancing with strings. Got up and started a puppet. Have some old ones I will paint chalky white.

Again

I have to do it again. It was gruelling and painful beyond belief and I have to do it again.

This week and last have been a lesson in coping for me.

Loss is terrible.

I wish I was a stronger person. But I guess this is the best I can do.

So many people are here for me. And those who said they would be here but didn't show up
will simply be released to gravity.  They are flimsy and empty bags of hot air.

Big, big bless to the best. What would have happened without you?

Tim leaves work in a few more days. He is determined to get me up and on a plane.
He is so tired. There are support groups for partners and caregivers. He won't go.
He needs time off and play. He said there will have lots of time to do that after.
Which is sad because no one has eyes like Tim when he is happy. Brilliant, big blue eyes with their own constellation.

Only One More Hour.

Components of time is one way to measure your life. Parcelling out blocks of time. Counting times an action happens. Appointments. Treatments.

Today's test will take a little more than one painful hour.

I am reminded of the day I was sure I wasn't going to make it.
It was the day my breast split in half from an infection that nearly killed me. Special nurses 3 times a day for months. I had a choice. I decided I was going to live.

Dr. Michael put his face right up to mine and said,"You can consider this a tragedy, no one would blame you. Or you can take one more breath and another one after that. Pretty soon you will be up again and walking. One little step at a time. Pretty soon it will be a thousand steps and you will marvel at your strength.

I have taken hundreds of thousands of steps since then. Which only means I still have to choose to keep walking and breathing. I never did find that pride but I am not dead yet. Although many strong friends are.

I will live until I die and I will do it with all the truth I can. Hopefully with enough forgiveness and love. No one said it was going to be fair.

Tests

So sick of tests. Even sicker of the results.

Tomorrow I get dragged through a small tube backwards. Someone will be pounding it with hammers. I will not be able to panic or move at all. Lots of sedation is required and pain killers.
But the process is fascinating.

Tomorrow I start further evaluations and increased pain management.

Femke is coming to support Tim and Hilary and Jim will be there.
Thankful for true friends who only make it better and not harder.

Thankful for the pretty flowers from my son Bren. Briggy came to sit with me.
And they really, really helped. My heart is so glad for their kindness.

For the first time since early childhood I could not thread or hold a needle.
I can see the hole and see the thread but I simply can't stop the shaking long enough to accomplish the task. So what am I now? A new image beside bump on the bed is required. I will get bigger needles and try again. And buy a hundred needles for Femke and Hilary to thread.

Little Emily interrupted her class at day care because she had an announcement. She told them she would be at Sweethaven this weekend if they needed her. She is going to be with her Auntie Pat! Beyond sweet. Little red headed monkey who I love. I know her. She will climb under my covers and read me a good book. And pat my face. It is funny how kids adjust. I stand up. They look for my cane or walker. They fluff my pillows and just climb in. They often make sure I have a stuffy to hug. They demand things on my behalf. For some reason they all just understand what I need. I have watched it with the Elf and Jackson. And Emily.

And they walk into the house and find the stuff they had last visit. Set it up and settle in right after arriving.

 Even the babies know something is different. They calm in my presence and snug in and fall fast asleep in the warm nest I live in. I have experienced  that with Sloan, Brielle, Aurora and Mila. It is not just that they snug in it is that they sink into who I am.

One regret is that I didn't have at least one other child. But I have had the opportunity to be with so many kids. The ones who have grown up and called me Auntie still come and snuggle in. Now, though, they bring their little babies with them. What an incredible honour! I know at least a couple will remember me.

Big Loss

Last night I found out that one of the most important people in my life died.
It was her time to die. She had enough of her life and illness.

I will always miss her. Today is terrible. Too much loss in a difficult time.

 She was an amazing artist and creative being.
I met her when I was eleven years old.
She mentored and nurtured me at a time in my youth where I was sad and not nurtured.
She knew what was happening for me in my home and intervened.

She allowed me to move into her home and helped make sure I was launched. Made
sure I was fed. Sometimes awful things like Tiger's Milk.
Made sure I felt respected and cared for.

Taught me so many things. Like doing a cartwheel. Laughter at stuff that was awful and painful.
We sang naughty songs, talked politics, drew pictures and drank wine.

Some of us are lucky enough to have more than one mother. She was mine.
I adored her sophisticated, elegant artistic being. Her ability to create music and art.
The first time I met her she was in a black turtle neck and tight black pants. She had a long cigarette holder and perched on the arms of chairs. Men were devastated by her.

She read me poetry and bits of stories and introduced me to Canadian authors and artists.
She would grill me on current events and have lively discussions despite my ignorance and innocence.
She put up with me when I was intolerable.

When my beloved grandfather died. She found me by driving street by street. She told me of his death and made sure I had the support to get through the loss of my most important loved one. She helped me organize his funeral. My own mother could barely move. She found a minister to do his life ceremony. He was a communist, godless and extremely poor.

Her daughter remains my closest friend to this day.

I am so glad she was happy  at the end of her life. That her friend's cared for her. That she saw the ocean and beauty and held true to herself. She was a Mom to me. And I can no longer thank her.

Hope List

There are things I still hope for. I looked at this beautiful wrapped white embroidery thread Celine brought me back from her last journey and gave me for my birthday. White thread always represents hope.

Hope keeps eluding me now. Something I am too tired for.

The life ceremony for Jessica Karen was today. She died days after Karl did. They burned notes for her in a fire. Memories and prayers and thoughts. Her Pire. Her Ghat. She did not survive inadequate medical treatment and the support system she was left with. She was mentally ill and withered away until her heart stopped. 36 years old. She was a magical thinker and a spiritual person who thought her thoughts would manifest themselves into the energies to change her terrible reality.

Karl died as well. He was a pragmatist who was a left-winger. He existed in the real that atheists do. Not always happy or ever magical. He had an amazing support system. He was loved until the end. His ceremony was a wake of sorts. Lots of music and memories.

Two deaths in two weeks. Both touched my life in a profound way.

The anniversary of Kate's death is in a few days. She was a magical thinker who refused cancer treatment until the end. She did everything alternatively and naturally and it didn't work. She invoked the spirits and they didn't come. Morphine was not enough.  Her daughter is just entering high school. I held Kate's mother during the burial and she panicked and we had to leave. Kate's drug addled and magical husband dressed her in an expensive sari and draped her in jewels. She was Macedonian and English after all. The children sang and played Irish music.

I thought about white cloth today. I once met a good looking man one day and asked questions about his white turban. I didn't know it meant he was a widower. He educated me about the colours of turbans and style and traditions. He was a teacher. His wife died of breast cancer and when he asked me what I had. I said the same. He cried and said I needed to be very brave from then on because it would be awful. And mostly it hasn't been. Not so great right now but she only had a few years and I have had more than 10.

I still need some hope to placate those around me. To stop them from crawling all over me in terror or abandoning me completely. I'm not really sure how to handle either. Or the grief of those whose loved ones have already died. I do not have an easy or a fluid statement that satisfies the spiritual ones without them mocking my reality. Atheists are not offered the same respect while they are dying. People who chose science as their answer are thought of as mistaken in our new Dark Age. There is the way. Fundamentalist and perfectionist. No sloppy chaos for those who are believers. No conclusions. No reality.

I had to remove a DNR. Do not resuscitate. For a little while longer. I nearly choked to death the other night. Too quick and easy for me.

Today I was well enough to get out of bed for awhile and Tim helped me into the car. We went and slept on the beach for nearly two hours. Soft cool ocean breeze. Summer heat. It was perfect comfort. Tomorrow I am back in the hospital. Or in my Vancouver bed.

I am here and they are not. For no reason at all. I can never say I understand. I wasn't supposed to survive my birth. But I did.

Hospital

Will be in the hospital on and off again next week.
Too sick to deal with much of anything else.

A secondary disease has been found in my system.
It is neuro-muscular. It may account for the pain and medication difficulties.
It also probably accounts for many of the complications that keep happening.

I just won't know what it is until Friday when the Neuro-muscular Specialist. Unless I get sicker.
All I know is that I am just too sick to sit up for long. That I vomited enough to lose almost 14 pounds in a little more than two weeks and that I wrestle with the pain most of the day.

My husband is exhausted. He has been vigilant to a fault. And loving.

Mushroom

Don't

Dont lick you sister!

Carl

Carl is gone.

My friend.

Taught me how to make spaghetti the right way.
Sprinkled with joy.

Made me see joy in the end of this life by just calling it life.
Best thing anyone ever said.

Dreaming Weakness

I wake up in the morning. Not really morning for a few hours.
I get out of bed after planning. Remembering dreams if my pain is tolerable.

Dreams now are filled with my vulnerability.
So many have to do with endurance and trying to reach a destination.
I used to be so strong in my dreams. I could fly if there were obstacles.
It took no effort to be heroic.

Now it is different. I lose things. I am trapped inside places.
Witnessing someones great sorrow and I have no idea what to do.
I touch and there is a repulsed response.

My sleep is fit full. Sometimes there are more than one dream.

1. There is a baby dropped in my arms and it is almost porcelain.
Like fine Japanese porcelain that is opaque in the light. The baby has the whitest skin but no eyes.
It is so round and rolled up in a tight fetal position. I want to find someone else to care for it but I am burdened by it's weight. I sit and look at it and recoil but know I will hold it anyways. I have always been too responsible.

2. I am with Kyd in Lima, Peru. She has given me her horse to care for. There is a festival in the next town and I agree to bring it to her there. It must be perfectly groomed. I look and look and can't find either her feed or her curry comb. There are branches that look like they would work for a comb and when the first stroke hits her side blood seeps through her skin. I know I have to meet Kyd at Confession. I keep explaining to people that my mother is Catholic and not me.

3. My birth certificate is lost. I am allowed to get a travel card without it. I leave to a stupid destination that has a big box store and nothing else. The whole town is empty. So I open the door to go into the store and it closed down six months before. There is dust and a few papers and old boxes on the ground. I try to go home but the authorities at the border won't let me back into Canada. There is a hysterical little dog running everywhere. It is in terrible condition and no one will help it. I try to pick it up but it bites me. I drop it and it continues it's hysteria.

4. My father is across the river. It is filled with logs and I try to walk them like a log driver but the logs I choose are really just floating bark. My father is yelling at me. Saying his normal unkind things. " Get up you big baby!" And then he puts on his disgusted face and storms off into the forest. I can hear him but I can't see him. His tirade continues and I know it is hopeless.

All last night the dreams kept coming. None particularly profound or meaningful. None that hard to figure out.

5. I am with my Nanny. Irish for Granny. We are in Parc Frontinac in Montreal. There is a grotto with a Mary in it with flowing blue and white gowns. Her face is pretty. I try to pry the figurine out of the grotto

I have one dream that has been repeated over and over. It is kind. I dream I am standing in a vast prairie field. My hands are covered in prairie dust. I wipe them on my dress. There is a dusty mist and the sounds of the prairies. Grasshoppers, peregrines, wind in the grass. My dress and very long light blond hair are captured by the soft breeze. The dress is long with pin tucks and a full long skirt. It is a faded soft blue green cotton. "This is not my time". But I know I am my great grandmother's mother.
My name is Julia.

In truth I didn't know her name and got a family tree a few years ago. There she was. Not a dream at all. Her name was Julia.

Julia always comforts me. She died when my great grandmother was a little girl.

Is there such a thing as genetic dreaming? I have no memory of Old Gran telling me her name.
Maybe she did.

My Step Granddaughter Sloane seeking a little comfort from me.

Enough Said.

Things have changed once again. My disease progresses.

The cancer is now in my upper spine and at the base of my skull.
There is pain finally which has become harder to manage.
It travels across my back on the right side of the spine. The same side as the most serious
invasion and the first mastectomy. It travels across neck and shoulders, under the arm and to the elbow.
My breast area is filled with scar tissue. New cancer has decided to travel there. Very tender.

I have been having some problems with Morphine and Hydromorphone. Haven't been able to take Codeine
since childhood. They are trying Methadone and Cannibis Oil. Sleeping pills. Everolimus, Spironolactone, a diuretic, Co-exemestane and sleeping pills when needed. This collection of pills requires side effect management. More pills. Acid blockers. Vitamins. A drug to stop my bones from crumbling. Creams to deal with rashes and topical pain. Creams to deal with other delightful side effects. Anti-nauseants. Steroids.
Antibiotics in massive doses when I get sick. Sunblock to cover areas previously radiated.

I now get Palminodrate infusions once a month where I sit in a room with other late stage cancer patients who are still ambulatory. The walking dead. We have the deepest compassion for one another and almost never talk about cancer. It is a strange little club. Four of the terminal in the room with chemicals dripping in from Intravenous bags of many colours. They now have to dig for our veins because they have developed nodules, collapsed or toughened. Three tries and another nurse has to take over. Three more tries and the next nurse takes over. And the digging hurts.

People say things. Tubes coming out of all manner of orifices. "I am trying to make it to Christmas, my kid's wedding, my birthday.". They say nothing about pain. Occasionally about indignity. Often about the effing exhaustion that follows all of us. Some try to obliterate their sense while others , like me, fight tooth and nail to find precious lucidity. Afraid to disappear. Some pray away in the language of their faith. All faiths.
Or talk about losing faith. Or have none and turn in disgust at all the frailty we are to a person.

Cookie ladies come by with treats. Cheerful and chirping nurses. Families who set up picnics and show up baby to granny.

I had radiation to deal with the pain in my lower spine in October and November. It worked pretty well.
But it damaged nerves and I have a very hard time walking down hill or on a slope. I drop things. Have what is known as Breast Cancer Palsy. And cognitive changes again from what is known as Chemo Brain. It makes decisions hard. Abstract thinking is hard. Motivation is  impaired. Depression. Mood swings from the hormonal soup I am.

Some good news is that the cancer has retreated from my lungs. That means I can breath with only the occasional reactive airway incident where I choke on foam. But I nod off. Fall asleep. Perceive things wrong.
Have to get up quickly and vomit and fight the constant nausea and dizziness.

I have tried hard to stay alive for a long time. But I don't remember who I was anymore. What emotions belong to me and what are chemical? I have no idea.

This week twice someone told me the story of another person who has lost the will to carry on with all of this. That the person isn't like me. That I am stronger, braver, more motivated. And I gasp. Why is this survival thing a contest worth comparison.

Other people have suggested that I am exaggerating my situation. That I am addicted to morbidity.
That I am really not that sick and can't come back to the world because it is too scary. These things can all be followed up with documentation. I am considered palliative for all that means. Late stage cancer.

I have hair. I look pretty good. I still stand up.  Walk now without much pain.

I was offered radiation on the base of my skull this week. It would impare my memory most likely, cause problems with my ear and cause me great pain. I might drool. Vomit a lot.  The side effects could be intellectually disastrous. My father lost his ability to move his arms, lost the ability to walk. He died in the hospice living with dirty diapers, bed sores and no longer had a voice except to whisper. He was mostly unconscious for the last few weeks but his pain was not controlled. My fear comes from experience.

I said no! Because the effects will not last. The disease will continue to progress.
I have entered that pissy place where heavy duty anger has settled in. Regret. Hatred. Neediness.
Possessiveness because of the terror of losing one more relationship.
The need to yowl at the moon in agony. In deep sadness. Not my finest hour.

I hate my life. But  keep on truckin'. I know that I am lucky. I have had all this time.

How long now? I am so worn out.

I spent time. Minutes. With my friend Karl. He is a week or two from death. His pain permeated every pore in my body. His defeated face peeled my heart. He has tried so hard. His little corner of my life is soon going to fade away. Now he wants to go.

As I am.

I am sick of this. I grieve my old self. The successful, accomplished, sensual and beautiful self who had time for compassion and thought of other people. Of my old charged and adrenalized life. Of my art and ability to follow opportunities. I just need comfort and despite the loving kindness of my family, friends and lovers I simply can't find it. Elvis has left the building.

I have made an appointment with Death With Dignity. I am afraid that if I lose consciousness those who love me will hang on tight. Keep me here. It is inhuman to keep pretending I need anything else.

Chin up. I suppose it is the only answer for now.

Silk Roads

I dreamed
 of her again.
Always walking while unwinding and winding.
I saw the beautiful silk cloth woven in Turkey.
My mother brought it back with her and told me of the Haggai Sophia.

It remains in a box covering the tiny red wooden shoe
that is the only physical thing left from the day she had to go.
The box has traveled everywhere I have been for more than 30 years.

Over and over during darker nights she wanders wherever she wants.
Winding and unwinding while staggering through knee deep sand. Pebbled and dusty roads. Through icy tributaries.

Empress Leizu had no idea what the steam released when her tea soaked cocoon
let go the power of an ugly butterfly. It evolved as all insects do.
The very first flutter after life as a lazy, hungry caterpillar.
But sacrificed for the thread that wove a cloth laid down as the first cobble for a long way home.

This road once again is lit with the blue poppy that enables my comfort.
Morphine and silken purple sheets soaked in the oozing from crushed Murex snails
 but once again on the road to Damascus. To metamorphosis. Described as changing from one physical manifestation to another. Damascus is a destination not yet completed.

Winding and unwinding one more time. We are all walking in the same rutted road very sure of each layered step. Dragging thin threads to mark the way home. More effective than bread crumbs.