The Shadows of Leukemia

The Shadows of Leukemia
Patrick’s leukemia is only a grey shadow. Don’t look.
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 I am here, finally!  I arrived in a small village in the Midwest on the last day of August 2005.  I am new to the Midwest, and have lived my whole life in Southern California.  For the first time in my life I live in a place where no one knows me, except for Patrick.  I moved here to be with him, my significant other, my soul mate and my best friend, to help him in his fight with acute myeloid leukemia.  Patrick was diagnosed with AML in August 2004, and after a year of intense and toxic chemotherapy, infections and other dreadful complications, was in remission. I kept a journal of our experiences.  We always shared life adventures and we often said we needed to find the travel agent and demand a refund for this medical adventure! 

April 2006.  I wrote of a lovely warm day. A day to wish for. A day to bottle up and take out and look at in the middle of January.   “Today is so lovely.  It is warm and there is no wind.  There is just a gentle breeze to ruffle the spring smells.  The smells are sweet and fresh.  On the trails and in all the village gardens there are trees with white flowers flowing all around the branches.   Everywhere I look I see shades of green.  The cardinals, blackbirds, woodpeckers and flocks of all species of birds are singing, flying and eating at my bird feeders.  There are doves cooing in the trees.  Last night I heard coyotes howling in the distant dark and the sound reminds me of my old California home.  The air is warm and calm and life is good.  I am at peace.”

Patrick’s leukemia is only a grey shadow.  Don’t look.

I wrote, “Yesterday I heard a frog on my 20 mile run!  I miss my California frogs.  It is a green and windy day with sun and clouds.  In the afternoon there was rain, thunder and lighting.  It was a peaceful Saturday.  Sunday was a cloudy day and I rode my bike in the wind.”

Patrick’s doctor visits are still positive and he feels fairly okay.  The blood and bone marrow tests show he is still in remission but with his blood counts still very low, he feels tired most of the time.

Shadows.  Don’t look at the shadows. 

”This morning I saw a huge flock of goldfinches.  Everything is so green!  There are warm days and cool nights to enjoy.  It is lovely to listen to the rain at night.  The lawn keeps growing and I keep mowing it.”

Patrick is feeling fairly good.  He keeps busy teaching archery to the kids in his archery club and is able to stay very active in the club.  He is still so tired and I am worried.  This amazing man manages to walk the Lincoln Half Marathon in May!  He has been a competitive athlete all his life, running marathons, ultra-marathons, and participating in every sport imaginable. It is very difficult for him to be out of shape, overweight, (from the drugs and treatments) and most of all so tired all the time.  But he manages to walk the entire half marathon!  Patrick never quits!  I am so proud of him!  The blood and bone marrow tests continue.

Maybe the shadows are gone?

It is late May.  “Today I saw a deer on the horse trail.  I had a possum at my bird feed pan and a raccoon ambled toward me on the trail.  My, what a wonder!  There are orange and black birds at the feeders.  Beautiful!  Bunches of little yellow birds, blackbirds, robins, jays and woodpeckers are swooping in to feed.  My cup runs over with joy!  Spring is here.  A loving black kitty has adopted me and I put food and water out for her.  She has kittens hidden somewhere in the bushes.”

“The mornings are cool and the afternoons are hot.  The evenings are beautiful.  Is this paradise?  At the moment there is no wind, the birds are singing and it is light and warm.  There are wonderful smells floating about and it is 8:45 p.m.  There is peace in the village.  Life is green.”

Patrick is still very tired all the time and the blood and bone marrow tests show he now has myelodysplastic syndrome.  This is a result of the intense chemotherapy he received for over a year to keep the leukemia in remission.  More shadows.  Patrick’s doctors prescribe a stem cell transplant as the only treatment.  The leukemia will come back.  He has been in remission and finished chemotherapy in September 2005.  We sit in the doctor’s office holding hands and hope for happier news.  We are so scared.  The shadows are here with us.  His first question is, “Will I be able to run another marathon?”  Probably not.  I cry.  Patrick is heartbroken.

In June I wrote, “Fireflies are flashing everywhere.  I hear crickets in the grass.  The crickets are singing and the fireflies are flashing.  The air is warm and soft.  The earth smells of grass, plants and that enchanting wet earth smell.  I saw a deer in the field. I wake up to the sound of bird songs and I can hear the corn growing.”

The shadows are gathering around us.

It is late June and I wrote, “I took a long bike ride on the trail and an amazing thing happens.  A deer jumps across the trail directly in front of me and then jumps back across the trail.  The doe and I are playing tag.  Catch me if you can.  The trees and bushes beside the trail were full of birds and the air is full of their songs.  I biked across little wooden bridges and I am charmed with the sight of the little creeks.  This is a magic place.”

Patrick has begun the testing to see if he is a candidate for a stem cell transplant.  None of his family are a match.  I am too old to be a stem cell donor.  We discover there are only nine possible donor matches in the United States!  Time is passing and Patrick’s weekly blood tests show his counts are dropping.  Patrick’s insurance will not pay for a transplant and he must now be treated at the Veterans’ Hospital.  This will take time he doesn’t have.  We pretend all will be fine and that the shadows are not coming closer to us.  He is becoming sicker.  I know he is scared but doesn’t want to talk about it.  I am scared also but afraid to share my worries with him.  I can’t imagine a world without Patrick in it!  He still has a full schedule of teaching the archery kids, club business and even manages to do some part time work.  I know he is worried about finances. He never quits!  He never gives up!  If we don’t talk about it, don’t look at it, maybe the shadows will leave us alone.

The shadows are much closer and thicker now.

In July I wrote, “On a trail bike ride I saw a herd of does with their fawns.  I am overwhelmed with joy watching them.  I stop other cyclists and we watch and smile.  I continued biking and a mother raccoon and her babies walked toward me on the trail.  I stopped again to enjoy the sight as they strolled off into the trees.  It was a day full of magic.”

The hot days of July have arrived.  Patrick’s blood counts continue to fall and the weekly testing continues.  The testing for the transplant continues. I now drive him to all his appointments.  It all takes too much time.  We are angry.  Are they waiting until he dies and they can say, too late? 

More and more shadows are gathering.  I am so afraid.

Patrick now has to have blood tests twice a week and is on antibiotics.  The doctors continue with the transplant tests.  Just when we think this is the last test, they find another one to do.  No one has answers to our questions.  He is frustrated and angry with the delay.  Time may be running out. 

The shadows are much thicker and closer. Close.  Please shadows, leave Patrick alone.  Please disappear.  Please let him be healthy.  Please let him live.

August 15.  I wrote, “It is another magic day!  It had been hot and humid.  I was biking on the trail and saw a badger.  I was so excited to finally see a badger!  I ran, biked and mowed the lawns just to be outside all day.  Last night I walked the trail in the dark and looked at the stars.  The kids from the village were having a party at the swimming pool and their laughter was streaming through the night.  Beautiful.  It was a very dark and secret walk.  A happy magic day.

This was the last of the magic days for Patrick and me.  I was blissfully unaware of the shadows’ strength.  I was unaware of the shadow approaching.  I didn’t look.

It was in the last weeks of August that Patrick started feeling really unwell.  He was very ill.  He was diagnosed with pneumonia and with his blood counts so low, it was extremely serious.  He was treated with antibiotics and platelets.  He has violent reactions to the platelets.  We are at the doctor’s office or the hospital everyday.  He feels very sick and is out of breath.  I am so helpless.  I can’t help him.  I am so scared and I know he is scared of what is happening to him.  We can’t get any answers to what we should do.  His original cancer doctor refuses to treat him and said he must go to the Veterans’ Hospital, but he doesn’t who to contact there for help.  I was on the phone, desperately searching for answers. There are many black Shadows now and they are closing in.

Finally on September 5, Patrick’s new doctor admits him to Veterans’ Hospital. The doctors finally start to treat the pneumonia more aggressively.  The Shadows are heavy and thick.  I didn’t know how thick.  I kept telling his doctors it could be a fungal infection and not a bacteria, but no one listened to me.  No one guessed it was pneumonia and proteinosis.

On September 8, 2006, the doctors sent Patrick to x-ray for a needle biopsy of the shadow in his lung.  Code Blue is called.  Panic.  He bled to death.  He was awake and aware of what was happening to him.  I was in the waiting room outside the x-ray room and I am screaming for him and begging to be let into the room.  Please, I beg the doctors, who came out to tell me things weren’t going well, tell him I am here and I love him.  This should not have happened. I heard him die.  The shadows smothered Patrick and he is gone.

After some of the blood was cleaned up, I was allowed to go into the room and hold his hand and touch his beautiful face.  What happened?  Where are you?  How could this be happening? Two hours later I am sitting alone in front of the hospital with a large plastic bag in my lap.  The bag holds all the clothes Patrick had worn to the hospital.  I look in the bag and pull out his glasses, his phone, his shoes and socks. I bury my face in his shirt and breathe in his smell.  I am in shock.  Where is he?  How can this be happening?  This is not real.  I sit for a long time.  Alone.  I can’t drive myself home. Two of Patrick’s friends arrive late in the day and drive me home.  This has to be the shadows’ dream.  A nightmare.

September 8, 2006, Patrick died.  I can’t ignore the shadows.  I am looking right into them.  I am in the shadows.  My life is over.

September 14.  I wrote, “I am biking on the trail.  I am sobbing with a horrible painful grief.  I look up and I am surrounded by a huge flock of orange and black butterflies.  They keep me company as I slowly bike down the trail.  A deer appears out of the trees, looks at me and walks across the trail.  A large beautiful red fox walks ahead of me and turns and walks toward me, unafraid.  I watch with joy.  This a the magic Patrick has sent to me.”

Patrick is with me.  The shadows are fading.  Patrick never quit.  I can’t quit.  Patrick, I love you.

 

 

 

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