Home.

I am in my house on Mayne Island. Just for a few days.
It is wonderful.
So wonderful.

Letting Go and Hanging On For Dear Life

Right now, after weeks in the hospital expecting to die but living has changed so many things.
I am now very medically fragile and will continue to be. My husband has left work which he deeply loved, to care for me. He has to do things like give injections and negotiate care and does so by leaving piles of dignity. And manage an impossible long list of medications and medical appointments. All his management skills have kicked in. Along with dedication and love.

Steroids to keep my lungs functioning, Sometimes I can walk and sometimes I can't do it very well. Sometimes communication is nearly impossible because of pain and frustration.

I was about to end all medical treatment and silently start to let go but waited a little too long. I can't do that now. Because the cancer cell count has plummeted but a tumour is in my skull and in T3 in my spine. The adjuvent chosen has killed cancer when that wasn't expected. The booster to the adjuvent has destroyed my core health. And the huge blood clots came from late stage cancer.

Both of us have let people go from our life. Without much sadness at all really. The sadness of this far outweighs other loss for both of us. This one is just far too big to deal with other people who don't come through or make anything sadder or more difficult.

We are truly surrounded by caring and friends. There is quality to life for this precious while.
And after 33 years with all that means we get this next little while.

I watched death in the hospital a few times when I was there. I could not see it but knew because the environment changed with the routine and the caregivers burdened faces. They were moodier after. Less patient or sometimes a little more giving. Families could be heard a little but it was their walk out of the room that was so clear. Almost single file with eyes straight ahead.

It is like that now. Eyes straight ahead when needed.

But I get to go back to Swee

thaven for the weekend. Tim has surrounded me with my art supplies and I have played a little and he has started reading me a series of interconnected myths and sociology about living solo in a crowded world. He has explained why our relationship exists, continued to morph and then thrive. And that had to do with both our capacities to speak truth (loud or not) to maintain intimacy and recognize quiet and personal agency. We spend time with others and simply end up retreating into what no longer needs tinkering with. Just us.

I have always thought it had a lot to do with his genuine open minded patience and respect for others. And certainly for me. He has almost no capacity for cruelty and may judge others but from a genuinely fair lens. He is unbelievably kind.

I have not once felt to be a burden to him. Not once.

Detail of quilt made by my Great Grandmother Mabel Della Wells. It was a gift to my Grandmother for her marraige. Cotton with a lamb's wool batt. I slept under it as a little girl on the farm.

Day with Mother

Today my mother showed up and I had a chance to grill her for names. And arrival times in Canada` from Ireland and England.

And we sat there holding some sad facts. Her mother and her mother's mother were dedicated to textiles. My great grandmother was placed in an Ursuline Convent in Quebec when she was very young and like many Irish girls of the time were essentially enslaved to embroider white work to make profit for the Catholic Church, She was very clever and considered beautiful.

Her strength was legendary. One day a masked man came into the shop she owned in Montreal. He had a gun and in an instant reaction she leapt on the counter and slapped him hard a cross the face and became a ferocious being and grabbed his gun. He was so shocked he ran fast from the store with Mary Josephine cursing him all the way down the street.

The Church continued to control part of her life well into adulthood until the priests told her she had to bury her mother in a High Mass and pay for it. She only wanted to pay for a Low Mass. She had already dedicated much of her life to helping them raise money. After working very hard for every dime as did her husband. So she would not. She held her ground. Fiercely. And she won. But it changed her dedication to the Church. And it changed my grandmother's dedication who chose to leave when she married.

And one daughter only to each of them. Except me. I have only sons.

A few years ago my mother chose to return to the Church.

My mother is giving me my Great Grandmother's picture. Mary Josephine. I have seen it once or twice. She had beautiful auburn hair. But my mother and her mother had jet black hair. I am blond like my father. We are Hiberno- Norse genetically with a little Spanish Armada on that side of my family.

My hands have run over the leather of the Prayer Book from Ireland and the Rosary beads.

Stitches on this done by Mary Josephine, Mary, Kathleen Mary, Patricia Kathleen .
French knotted silk stitched on hand drawn linen. Started in the 1920's but an ongoing project.

Beautiful carved black leather and silver clasps. When I was twelve I went through it page by page. Generations of women had placed blossoms on the pages to press. And there were writings in the margins. My Grandmother writing that she was struggling but deciding to leave the church. "My Lord I forsake Thee!" in a childlike and emotional hand. I cried. The same Grandmother called "Nanny". I have the dresser from  Mary Josephine's house. And my Nanny had crawled underneath and drawn a picture of Mary Pickford in a beautiful pencil drawing that she had managed to etch the wood with. My signature from first grade with the girl with braids picture I drew.

Nanny was my primary parent when I was  young. I watched die as a little girl. And my mother Katy had to reclaim me. But I was completely lost and abandoned. I did not belong to her. I did not know about gene pool.

Brewing

Medications in line right now. Body adjusting. Going in for infusions today. Tim and I negotiate injections every day. He gives them to me and sometimes they hurt. I am still afraid of them. I would have been the worst junkie in the world. Just hope the blood thinners are working.

Have learned I need way less pain killer if they are available and I take them with regularity. Down to half when things are managed carefully. This means I can think. Plan. And create. Having all this time has started to fill up sketchbooks with ideas that are cohesive. Having dreams about full projects really helps. Everything there. Including visuals on materials needed. And I can read again. Real words. Academic papers instead of small articles. About fiber, Vikings and burial containers. All directed by a stream of genetic connection and personal history.

And one of the nurses in the hospital heard I was a fiber artist. He came and talked for a long time. About a museum for Islamic textiles. He brought in images of some of the breath taking 700 year old protection garments. Gold and precious metals woven into script. And fragments of the prayer cloths from Mecca.  He is a calligrapher who works with fine vellum made from baby deer. He thinks they can be stitched and have been. My desire to work with the fundamental kicked back in Mayne. I pulled him together a list of contacts. He made sure I had oxygen, shots and medication. And inspiration. And true compassion. Sharing of ideas.

Arthur came by. I insisted I be listed as atheist when asked about a spiritual advisor. I only wanted a Unitarian Universalist who was a humanist or atheist support. Impossible. But he actually existed. And he came. And helped. Really helped shake me from the terror of being in a huge institution and powerlessness.

And a young nurse who just graduated from school in Montreal. Bright blond Irish and from between Cork and Wexford. From my mother's neighbourhood in Montreal. Comfort. When I experienced distress late at night she figured out I needed something else besides Atavan or Hydro-morphone. She scooted down the hall and found some potato chips. And closed the door and shared them because potato water was in our blood. And laughed.  All anxiety dissipated immediately.

Never doubt cracks in the walls where true human beauty pours out.

I didn't die. I was completely ready. But once more life continues for awhile. More damage than before and more challenge but this can be handled. Upright far more often now. Pretty shaky but getting some core energy back. I am so well cared for. Bren. My mother. Christine. Gayla. Birgitta.So many people. And lots of people dropping in. And Tim kicks everyone out when he sees me going under. I have a hard time noticing that. He is very conscious and protective. And more than real.

The sun streams into this apartment. It is a soft and lovely place to do this. Such a sweet little cave.

Old thoughts on Mecca. "Return to Mecca" Portion of a five meter length of velvet. Complex cloth.
 Done by me and in the collection of Christine Basque. 

New Landings

I have been in the hospital for the last 16 days.
I came home last night to my little Vancouver apartment and slept in my own bed.

My postings have been non existent.
 I am still alive. I was rushed by ambulance to Acute Care from the Cancer Clinic with lungs full of pneumonia. I had no wait in the Emergency Ward and was placed on oxygen and pain killers immediately. I was surrounded by more specialists and nurses than I can imagine. I have almost no memory of a week of my life.

Sometime during that time I was placed in a room alone. The room was gorgeous and overlooked the ocean and the beautiful city. I woke up and fell to sleep to the sight of ships and clouds through huge windows.

My lungs started to collapse and I fell into an abyss fighting for every breath. I would wake to my mother, my children, my vigilent husband, my brothers, my closest friends and extended family.

I started to lapse into release. Letting go. But I was constantly bouyed by my pod who kept me floating. To nurses who heard my need for some comfort and to the biggest stream of Doctors and baby Doctors I can imagine. Specialists doing their best to claim part of me. I railed against their direction at times and Tim kicked in as the most loving and incredible advocate  who without fear explained me to them in a way no one else could.

They decided to take away some drugs I relied on to make my life work and suddenly it really started not to work. Avalanches were caused. Everything hurt worse. It was ferocious. The terror and blood pressure became worse. I developed blood pressure problems. Veins started to clog up and develop a deep vein thrombosis and clots that are more than 16 inches long.

And then they did what I needed them to. They did the worst thing I can imagine and made a decision to wash my lungs. To try and identify if I could be treated for a chemical pneumonitis or continue to be treated for infection. There was never infection but a drug interaction that was doing this. A mistake and side effect. The lung washing will leave me with terror for the rest of my life. But it kicked in my lungs and my care. There was no infection anywhere. I was no longer the threat to infect others. I just needed to be rescued from a very bad drug.

I was given other tests that showed more and more. The cancer has left my lungs and some of my lymph nodes. It has not just kept still and even. Cancer has died. I am just on an adjuvent which is acting like a chemo. It is killing some of this cancer. The cancer is in my skull but is not showing up in my brain. I am not cancer free. Just freer of cancer. Less there.

The issue for the last few months was a drug that was a booster to the adjuvant. It would help the statistics slightly. But it back fired. Big time.

I am left with a permenent condition with the chemical pneumonitis and will be on blood thinners for the rest of my life. My voice has been changed. The collapsed lungs will never fully repair. But I can stand up, think and create once again. I tried to sing. No possibility. And I am so deconditioned it will take months to repair my strength. I cannot walk without help to the car. I can no longer lie flat in my bed.

When I was being dismissed yesterday one of the Doctors turned around and said, "You are one strong woman. Go home. Don't come back!"

I have to deal with the mess and the expense that are left but I am home.

Spent my first day out in a wheelchair. I can walk a bit but not for long without breath.
Breath is so precious. So is good, clean air.

Me. Trying to catch my breath. 

Day before release minus most of my hair. Day 15.

Beloved Butterfly who made it to my window as a gift one morning. I needed to be reminded of frailty .

One little stitch at a time.