Patrick Update: For A Dancer

Dear family and friends:

Patrick is living his last days. He might only have a few days, or, a couple of weeks. We are hoping to have him with us 3 or 4 more weeks, and a miracle is needed for that to happen.

His dear sister Gwen came from the East Coast a little over two weeks ago, and is such a blessing to have near. She bathes each room she enters with Love. Her presence comforts his heart and eases his mind, so much so that Patrick is centered in peacefulness. Sometimes she has had to provide bedside nursing care to me, as well as, to Patrick, as stress is taking a heavy toll on my health. She has become the sister, who is strong for me and gentle with me -- the sister I always longed to have.

My brother, Tim and his wife, Barbara have come in from out of town to spend several weekends with us, caring for Patrick through the night. This week they took off work and came to stay all week, lovingly caring for him, to give Gwen and me a break. They each take turns holding me as I cry when I am overcome with grief, and make jokes to help Patrick smile. As gently as if they were handling a newborn babe, they cradle his frail and fragile body to move him in bed. The first time they came was a month ago and Patrick had just lost the use of his right arm and hand. The following week he lost most of the use of his left.

Now, everything must be done for him. Tim brought him beautiful fresh flowers for his room, and Barbara brought him chunks of really good dark chocolate, both of which delighted him thoroughly. They shop, cook, clean, wash laundry, change bedding, empty urinals, mix up and administer tube feedings, give medications, wash his face, sit with him, and hold his hands. All they do is accompanied by a big dose of love. As he held back heart-wrenching sadness, Tim told me he wished he could take away Patrick's cancer like that guy in the movie, "The Green Mile" could take away death and disease. Barbara told Patrick it was a privilege to be here to help, in response to him thanking her for all she does for him.

No words can adequately describe the gratitude Patrick and I feel for our friend, David, who has remained steadfast by our side, since January when we first learned Patrick had esophageal cancer. He has shopped, picked up prescriptions, and schlepped me and my wheelchair to and from the hospital countless times. He has been my pillar of strength during times when I have been near collapse from grief and stress. He visited when Patrick needed company late at night here at home, and was a regular visitor the many weeks Patrick spent in the hospital. David held Patrick's hand through the dreadful ordeals of receiving radiation and chemotherapy. He played chess, watched movies, and sang oldies songs with Patrick. David fixed things around the apartment, took out the garbage, and helped get Patrick to bed when he could no longer walk unassisted. He remains a very dedicated friend who has constantly shown the utmost kindness and compassion towards Patrick and me. No one has done more to help Patrick keep his spirits up, even on his darkest days. He is and always will be our hero, affectionately known to us as "SuperDave".

My youngest daughter, Molly, comes to see about us a couple of times a week, but is usually not able to stay long, because she becomes overwhelmed with sadness to see Patrick so ill. My oldest daughter, Sarah, phones from the East Coast often to send her love. And, my son Adam, phones from the West Coast to see how we are doing and offer words of comfort. Patrick's brother and sisters, as well as, many of his East Coast relatives telephone frequently to wish him well, which helps enormously to lift his spirits.My home health aide, Mary Helen, is an angel, who comes during the week daily to help care for me and Patrick. She and Gwen take care of all the tasks Tim and Barbara handle on the weekends. At 71, she runs circles around all of us, doing anything and everything she can, staying many more hours each day than those for which she is paid.

And, also on our team of caregivers, we have the services of Hospice Austin, whose staff are dedicated to doing whatever it takes for Patrick to be able to be home, where he wants to be on this last path of his journey. They pay for over half his meds, and send a wonderful CNA three times a week to bathe him in bed. She works with a reverence that amazes us all, as if Patrick is the most important person in her caseload. Nurses come weekly to assess needed medication/treatment changes. I can call and get help from a nurse 24-hours a day, which we have been in urgent need of when Patrick has had "bad nights", either struggling with agonizing pain or repeatedly throwing up his meds.

Twice the Hospice Austin doctor, who happens to have a heart AND a brain, has come to sit with Patrick and learn what needs to be done to ease his pain, as we all struggle with him down this horrendously painful path. He is so caring and loving as he answers Patrick's questions about how much time he might have left. And then, five minutes later, has to tell Patrick for the fifth time, there are too many tumors to be able to remove them surgically, and he is too ill to survive this disease. The social worker and the chaplain, both young women, come for weekly visits. They put Patrick at ease enough so that he talks to them about his concerns about me and how I will manage after he is gone.

As for me, I think I should get an acting gig when all this is over. Somehow I almost always manage to keep myself together, and wear a smile for Patrick when I am at his bedside, even though inside my heart is breaking, and after I retreat to my room, I cry gallons of tears to let a little of my pain out. He seems to know when I have fallen apart, as he sends kisses and hugs to me through Gwen. Even though every moment with him is precious, I often cannot enter his room, as my grief about losing him is unbearable. Thankfully, my enormous love for him allows me shake off my numbness and spring into action the minute he is suffering. I dread the possibility that major organ failure, a perforated trachea, or some other catastrophically violent medical event will precede his final breath. And, I fervently pray for the strength to do everything in my power to help his end be peaceful.

For now, Patrick can still move his head and legs a little. Sometimes he has trouble talking. He knows what he wants to say, but his brain does not allow his mouth to speak, and he feels frustrated. He sleeps a lot. He enjoys listening to music. We estimate he weighs around 110 pounds, as we desperately battle his wasting away syndrome. He can no longer get out of bed because all the muscle mass in his body has been burned to provide energy to his vital organs. He can no longer tolerate the weight of his frail body pressing on the tumors on his spine to be in a regular bed, so he now floats on a mattress filled with chambers of air. Sometimes he has a lot of mental confusion, and other times he is clear headed. Well, as clear headed as one can be who needs opioid narcotic medications, around the clock, to manage the excruciating pain caused by the baseball-sized tumors invading his vertebrae. The tumors are crushing the nerves, and pressing on his spinal cord. He also has tumors compromising his trachea (wind pipe), his heart, and the upper lobes of both lungs. Ironically, his esophagus is now cancer-free. Seems the chemo and radiation killed the cancer in the original tumor. And, for three months, mid-June through mid-September, he was mobile and pain-free, before the cancer spread to other places in his chest cavity and to the vertebrae of his thoracic spine, up between his shoulder blades.

The first week in September, Tim and Barbara took me and Patrick to vacation for a week on Galveston Island, where we had a great time staying in a condo right on the beach. At night, alone in the pool, we danced what turned out to be our last dance together, as Patrick sang, "Under the Boardwalk" to me, which he said was one of his mother's favorites.

Twelve days later we learned the cancer had spread, and our world shattered. Up until then, we both believed he would beat this dreadful disease.

I have told him how he has made me strive to be a better person, and how grateful and lucky I am to have had him in my Life. I have reminded him that he leaves a powerful legacy behind in the lives of all the people he has touched and nurtured. He will be remembered as having been a great man, the best uncle, the best brother, the best friend, and the best father to so many troubled children that have needed and remain grateful for his love. He was unable to speak when I told him these things.

Later, he told me he wished I had been his first love, and had been able to spend the last thirty years together. I believe that to be a perfectly beautiful wish.

In closing, I share with you one of Patrick's favorite songs (lyrics below.)

FOR A DANCER
Originally from the album: Late For The Sky(1974)

Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real by playing the clown
Now you're nowhere to be found

I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear playing right in my ear
That I can't sing
I can't help listening
And I can't help feeling stupid standing 'round
Crying as they ease you down
'Cause I know that you'd rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning you might have found
Don't let the uncertainty turn you around
(The world keeps turning around and around)
Go on and make a joyful sound

Into a dancer you have grown
From a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive
And the time you go
May lie a reason you were alive
But you'll never know

Written by Jackson Browne
(c) 1974 SWALLOW TURN MUSIC