End-of-Life Option, Ray’s Story

Choosing end-of-life option, Ray Perman’s Story

In 6 states, those facing terminal illness can decide when to die

Five years ago, 64-yearold Ray Perman was diagnosed with terminal cancer.

Perman, a designer and consultant who lived in the San Francisco Bay area, had sarcoma carcinoma, a rare and terminal cancer that affects only about 200 people a year in the United States. He also had a common, low-grade, progressive prostate cancer, not unusual for men his age.

The sarcoma caused a large, rapidly growing tumor to form in his prostate and nest against his colon. At the suggestion of his oncology team, he immediately underwent surgery to have his prostate, bladder, numerous lymph nodes and other flesh removed.

At the time of surgery, biopsies showed that both forms of cancer had metastasized, spreading the cancer to other lymph nodes. For a year, he and his doctor decided to wait instead of pursuing further cancer treatments.

A year later, the sarcoma reappeared in the form of a 5-inch, football-shaped, rapidly growing tumor in his lower abdomen, and later 12 quarter-inch and 1-inch tumors appeared in his lungs.

He was told he had two to six months to live.

Perman, at the suggestion of his oncologist, decided to try an unusual combination of two of the most powerful chemotherapy drugs available: Taxotere and Gemzar. The treatment was predicted to have about a zero to 30 percent chance of “doing something.”

The combination was so toxic, Perman said, that it caused his legs to swell, his fingernails to fall off, excessive bleeding, loss of body fluid and neuropathy, a nerve disorder that causes weakness, numbness, tingling, pain and balance problems in the arms, legs, hands and feet.

Miraculously, the treatment worked.

The large, aggressive abdominal tumor in his lower abdomen and the 12 in his lungs shrank, extending his life.

A second round of chemotherapy began about a year and a half later, when more sarcoma tumors appeared in his pelvis, tailbone and rib cage, but this time it had little effect.

“When it became obvious that treatment wasn’t working, that the side effects of the treatment were worse than the disease and that I had only a few months to live, I knew I had some decisions to make,” said Perman. “And I decided to seek only palliative care through hospice at my home and began to investigate the use of the California End of Life Option that went into effect on June 9, 2016, and authorizes medical aid in dying.”

Barbara Coombs Lee, president of Compassion and Choices, a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill, says that where end-oflife options are legal (Oregon, Washington state, Montana, Vermont, California, Colorado and Washington, D.C.), the fear of liability has been lifted and patients are able to talk frankly with their doctors about their fears and hopes and how to end life peacefully.

“When you’ve watched someone suffer, you will quickly become a convert for peaceful end-of-life options,” said Coombs Lee, adding that when people don’t have options, they revert to denial.

According to a recent Gallup poll, 69 percent of Americans said they agree that “when a person has a disease that cannot be cured … doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request it.”

And doctors mostly agree, according to a Medscape survey of more than 7,500 doctors from more than 25 specialties. In the 2016 survey, 57 percent agreed that “physicianassisted dying should be allowed for terminally ill patients,” while 29 percent were opposed. In Medscape’s 2010 survey, 46 percent were in favor and 41 percent were opposed.

Dr. David Grube, national medical director of Compassion and Choices, said he’s found that in states where end-of-life options are legal, patients most often bring up the topic with their doctors. Those doctors, he said, are then ethically bound to be sure their patients understand the parameters of end-of-life laws.

To participate in end-oflife options, a patient has to have a terminal disease with less than six months to live as corroborated by two doctors and has to be psychologically capable and physically able to selfadminister oral medication.

“One third of those (in Oregon) who do get a prescription don’t use it, but it makes a huge difference for a person to know that he or she is in control and has the right to self-determination,” said Grube.

For Ray Perman, once it was clear that there was no further viable treatment for the cancer, the key issue became quality of life.

He spoke with his exwife and adult children, who had been supportive, and began the end-of-life options process required in California. He got confirmation from two oncologists that he was terminally ill with no chance of recovery; told his doctors of his wishes; and was competent and able to self-administer the life-ending medication.

His prescription was filled.

“I know I am going to die, and this end-of-life option has given me the freedom to enjoy the rest of my life without the fear of losing control over my own existence,” Perman said. “I don’t want to be described as struggling or battling cancer. I am living and breathing and singing and playing music with cancer, and most of all, I’m enjoying the profound beauty of life.”

On Feb. 4, Ray Perman took his end-of-life medication, and surrounded by his family, he died peacefully.

Visiting Her in Queens . . .(poem)

 

Visiting Her In Queens Is More Enlightening

Than A Month In A Monastery in Tibet

 

For the fourth time my mother

asks, “How many children

do you have?” I’m beginning

 

to believe my answer,

“Two, Mom,” is wrong. Maybe

the lesson is they are not mine,

 

not owned by me, and

she is teaching me about

my relationship with her.

 

I wash my dish and hers.

She washes them again. I ask why.

She asks why I care.

 

Before bed she unlocks and opens

the front door. While she sleeps,

I close and lock it. She gets up , unlocks it.

 

“What I have, no one wants,” she says.

I nod. She nods.

Are we agreeing?

 

My shrunken guru says she was up all night

preparing a salad for my breakfast.

She serves me an onion.

 

I want her to make French toast

for me like she used to.

I want to tell her about my pain.

 

and I want her to make it go away.

I want the present to be as good as

the past she does not remember.

 

I toast white bread for her, butter it,

cut it in half. I eat a piece of onion.

She asks me why I’m crying.

 

Michael Mark        The Sun, March, 2017

 

 

 

 

Good Folks Out There

 

Image result for photos cane

I value the courtesies given me as a somewhat disabled old guy, and I enjoy telling about them, spreading the good news–there are good folks out there.

First a word of caution.  Being nice can be dangerous. When I drop my cane, someone always picks it up for me.  Recently, I was waiting in line at a Starbucks when I dropped my cane and two people jumped to get it, could have cracked heads in the competition to do good !

Two days ago, I took my car to Jennings Chevrolet in Glenview for an oil change. Yes, Jennings VW is still there, too,  where a service writer did me a favor once.

After leaving my car, I went into the waiting room for a bagel and a cup of good coffee, noticing four older people watching the Today Show and a young woman sleeping,

I toasted my bagel, drew my coffee, and found I could not carry both to my chair with the cane in one hand, so I left the cup behind for another trip.

One man had his legs extended to the center of the room and I thought, “Well, old guy, you might just get stepped on,” but he pulled his feet in and I said, “Thank you.”  I put my bagel on a table  and turned to go back, finding Mr. Longlegs right behind me.  He said, “Here’s your coffee.”

A little later, the young woman woke up and caught me looking at her in a grandfatherly way.  I was concerned when she left the room that I might have made her uncomfortable, but she came back.

I must have dozed finishing my coffee, because I felt something at my hand holding the cup–the girl was taking it out my hand very gently to prevent a spill.

I thanked her, told her I done that a couple of times, had spilled a drink into my as I fell asleep.  She said she understood.  Said she worked in a nursing home where “They do it all the time”.

RJN

 

 

 

 

 

Happy New Year ! –Photo

New Year's Eve 2016Nugent and Foote

New Year’s Eve party of Penn State alumni  Rose Bowl tour in hotel in Los Angeles was held at 7:30 with pastry and cheese and speeches.  Several hundred tourists celebrated the New York new year at 9:00 with party ending at 9:30.  I intend to write about this trip for the blog.  RJN

 

 

When you see a man with his pants down . . .

What do you do when you see a man with his pants down, his shoulders and torso wedged between the toilet and tub?

You laugh of course.

Image result for photo woman laughing

Anyone would!

Alice did.

She had heard my shouts from the lst floor bathroom at her 2nd floor workbench.  Came downstairs calling, “Where are you?”

When she’d gotten over the fun, she made some suggestions for getting me up, or out.

The one that worked was to pull my pants off, freeing my legs, so that I could roll over into the tub and use the bars there to stand up.

Why did I stumble backward and fall?  Maybe I was just careless.  Maybe I slipped on the dry bar of soap on the floor–strange it should be there.  Strange also to see a cat toy in the toilet with some kleenex.

I checked.  I did have my Medical Guardian device in my pocket so I could have pressed a button for help had Alice not been home.

A lady we know fell in her living room, broke a bone or two, and struggled to her telephone to call for help, forgetting the Med. Guard. button she was carrying.

I’m haunted by the story of the fat woman who fell in the shower, broke a leg, and sat in the tub for 2 days before someone found her.

RJN

Good Things to Do With Your Body

Donating body for research

People’s reasons and science’s uses are many

Students from Texas State University’s Forensic Anthropology Center search for the remains of a missing person. ( Texas State University)
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By Kay Manning  Chicago Tribune 10.26.16

Patricia Kelly had to watch her husband, William, descend into dementia, but he never wavered from a desire to give his body to science, and what followed his donation inspired her — and now their daughter — to not only pledge to do the same but to become fierce advocates of the idea.

When William Kelly died in 2011 and Patricia Kelly in 2015, they became part of an unusual program at the Indiana University Northwest in Gary, which teaches anatomy while encouraging communication with donor families through letters, visits and a memorial service.

Her mom cherished the letters she received from International Human Cadaver Prosection Program students, said daughter Susan Ellingsen, of Munster, Ind., “taking a big magnifying glass (she was legally blind) and reading them over and over. They were very personal and told us all they discovered about my dad.”

“My mother made a video to let students know why she donated her body and what hope she had for them to be the best they could be and to always take their patients’ lives and families seriously,” she said.

Ernest Talarico, who runs the prosection program, said he was troubled in medical school when all he knew about a cadaver was a number and maybe a cause of death. Fellow students disrespectfully named bodies, he said.

“The tradition in anatomy lab is to focus on the science, not to get too attached,” Talarico said. “What we do is a new paradigm. And research shows it makes better doctors.”

Many bodies donated for research have poignant back stories. William Kelly had a number of ailments and wanted science to more fully explore them.

Judy Clemens, of Hebron, Ind., had a progressive form of multiple sclerosis that so frustrated her that she took her life, but not before asking that her body be studied to better understand the disease.

Other donors are educators, scientists and members of law enforcement who know the importance of hands-on learning to solve crimes, find missing people or bodies, and bring closure to aggrieved families. They even designate that their corpses be used for such studies as how fast vultures decimate a body, or how cold or hot weather affects decomposition. Still others specify that their remains be used to train cadaver dogs.

Some bodies are donated by families seeking to save money since many programs pay for transportation and stage a memorial service for the deceased or return the cremated remains.

A future purpose for donated bodies involves recomposition, the turning of human bodies into nutrient-rich compost. A prototype for what the project director sees as an environmentally friendly alternative to burial and cremation is expected to be built in Seattle in the spring and will accept bodies for a pilot program to fully test the process.

“There’s scientific value to donating your body, but there’s a huge educational value,” said Cheryl Johnston, director of an outdoor facility at Western Carolina University, where eight bodies are in various stages of decomposition. The training they afford “is benefiting people by applying things in the real world.”

Daniel Wescott runs the largest so-called body farm in the country at Texas State University, where researchers and cameras document the rate of decay of 70 bodies above and below ground, bodies clothed, unclothed and wrapped in tarps, bodies protected by wire cages and bodies left vulnerable to scavengers. When reduced to skeletons, the bones become part of a permanent research collection.

The Forensic Anthropology Center simulates conditions under which bodies or people may be found if they are victims of crime, or are missing after wandering off or a natural disaster, such as a flood. A decomposed body produces soil that’s darker in color and vegetation that reflects light differently, allowing a drone to pinpoint a location to be searched. That saves time and money, Wescott said, and then experts can determine how long a body might have been there, leading to quicker identification and finding or eliminating suspects in criminal cases.

“It’s all for justice, not just for law enforcement, but to keep somebody from going to jail if innocent,” he said.

Decomposition research and technology have better prepared Texas to handle the border-crossing deaths of immigrants, Wescott said. Bodies are buried without names, leaving loved ones uncertain as to the refugees’ fate. The facility is trying to identify some 80 corpses, but “the very, very slow process” has led to only 10 names so far, he said.

Donated bodies also help train dogs that can detect human remains. Lisa Briggs, a professor of criminology at Western Carolina University, started training her golden retriever Laila at 7 1/2 weeks, and the 2-year-old has found three bodies and several people alive.

Briggs said she feels fortunate to have whole bodies with which to teach Laila because using synthetic versions of decomposed remains or even a single body part such as teeth or a placenta, as some trainers have to do, is inadequate.

“Drug dogs are trained on one scent — maybe marijuana — but with humans, there are so many variables, such as what they had on, whether it was cold or hot, medicines they were taking, if they drowned,” Briggs said. “No one can understand how important it is” for dogs to be exposed to all those factors.

She said she remembers an instance in which Laila was looking for two people presumed by police to be dead. The dog found the bodies in water by smelling the gases bubbling to the surface, Briggs said, adding she can be asked to help on up to 20 cases a year.

She’s seen the pain families go through when a loved one is missing. “I can only imagine what it’s like not knowing,” she said.

Brittany Winn said she knew her adopted “nana,” Clemens, was donating her body to Indiana University Northwest in hopes that something could be learned about multiple sclerosis. But Winn was unprepared for Clemens’ suicide in 2011 and the quick disappearance of her body.

“We didn’t know where her remains were. It was heart-wrenching for us,” Winn said.

Months later, a Manila envelope arrived from Talarico’s program, and his students’ first contacts with the family “had us in tears,” said Winn, who has gone on to participate in the program for four years as a student and team leader and is working as a medical scribe for a Fort Wayne, Ind., endocrinologist. She wants prosectors to understand the donor and those closest to him or her.

“It’s not just a cadaver but a person who meant the world to my family,” Winn said. “Words from the prosectors are the beginning of closure. And seeing that they get everything they can from the program makes me feel better. What they learned will be with them for life.”

She has registered as a donor, she said, but donations also can be arranged after death. Requirements vary, but programs generally will not take the bodies of severe accident victims, those with infectious diseases or bodies that have been autopsied, embalmed or had organs removed. Some have weight limitations; some will take cremated remains and body parts, such as amputated limbs.

Katrina Spade, founder and executive director of the Seattle-based Urban Death Project, started searching as an architecture student for a new way to look at death, out of concern that the existing options of burial and cremation are expensive, harmful to the environment and often shortchange traditional rituals surrounding a death. She realized the method used to compost dead livestock could be adapted for humans.

“All of nature is based on dead material being turned into new life,” Spade said. “It’s a renewal, but we’ve destroyed it through cremation or by pumping bodies full of chemicals and burying them in concrete boxes. It couldn’t be farther from what nature wants to do.”

She envisions nonprofit recomposition facilities being built in urban areas where land is scarce and there are unused structures such as churches or warehouses. Bodies could be carried by family members in a quiet candlelit ceremony or to the accompaniment of a brass band, she said, and then covered in wood chips to begin the transformation into soil.

“It’s a really beautiful way to treat bodies after death,” Spade said.

Kay Manning is a freelancer.

Kindness of Strangers

Image result for quotation kindness of strangers

Recerntly at O”Hare airport,  a young man helped me climb several steps into the van going to the parking lot and 10 minutes later helped me off.  I’m glad I had a chance to tell him that, since I’ve had trouble walking, I’ve become surer of how good people are.

Carrying my cane, I’ve had people give me their seats on the EL  (finally realized it was wrong to refuse ), stand back so I could enter an elevator, and other such courtesies.  I’ve dropped my cane several times, and someone was there immediately to pick it up for me.

A few months ago, we were at a small reception at the Adler Planetarium when I stumbled and fell.  Two men were on me immediately, one looking strangely into my eyes.  He must have felt my discomfort with that, said  “I’m a physician.”  I found I was in the middle of a semi-circle of about 30 people–first entertainment of the evening.

The guys helped me get into a chair, then made sure I got into the lecture room safely.

I think it is  wonderful that people want to help, but a helper must do only what the needful person wants.  Injured or handicapped people still need their autonomy.  

There’s a story about a young man who walked toward a busy intersecton and saw a frail old woman standing at the curb.  He swooped her up and carried her across the street, evading a bus.  On the other side, he put her down and said, ” Is there anything else I can do for you?”  She said, “Yes, take me back to the place where I was waiting for the bus”.

Disabled people expect reasonable consideration.  I worked briefly at a food store when I was in high school.  One day I saw a one-legged man start through the front door on crutches. A woman in a hurry pushed past him, jostling him aside.  Some minutes later, as she was bending over the potato bin,  the man struck her   butt with a crutch.  She neither exclaimed nor complained.

I enjoy remembering a scene from a movie  in which an old man carrying a bag of popcorn across a street toward a park is frightened by a young man in a convertible who honks at him and nearly runs him over.  The old man turns onto a sidewalk, sharing his popcorn with a flock of pigeons.  The young man parks farther down the street.  When the old man reaches the convertible, he dumps his popcorn in the front and back seats of the car.  I hope everyone knows what the young man will find when he returns.

 

 

Cracker Barrel

 

Cracker Barrel Store Front

Cracker Barrel is a chain of inexpensive restaurants with attached stores selling souvenirs, chotzkies, gift items.  They serve breakfast, lunch, and dinner.  I’ve eaten in one twice, and I’ve despised them until I read this:                               RJN

An anonymous online review:

“A Tip for Seniors”

I visit Cracker Barrel at least once a week.

This is one place that they will let Seniors

order off the kids menu and get the free drink too.

You can get a complete meal with drink and

either a biscuit or cornbread for under $5.00.

It’s cheaper than cooking at home for one or two people.

In the winter, I go up there a lot and ask for a table

by the fireplace. Cheaper than getting a duralog

for my fireplace and sitting alone.

 

source

Keeping an Eye on Old Guys

Image result for old man laughing photo

Yesterday I stepped out of the shower to get a bar of soap.  I got back in with my empty coffee cup–no soap!  RJN

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The lay-out of this poem looks weird, an artifact of the software.                                       Just read it straight across.  Kind of fun.

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 Without due thought I bought                                                           two hundred-fifty dollar boots                                                           that will never taste a mountain trail.                                                  A lot is lost, and sometimes I can think                                             comfortably I’m ready to let go.                                                         Easy to say when you can walk a bit                                                 and talk moderate sense, meds keep                                             major parts in tune,  and chances  do                                               look good for next week too.                                         

         But on this easy autumn day,                                                           I hear winter blowing, know some                                                     old guys will not make it through;                                                   might as well be me as you.

       Our accountant Jim Malone cleared                                                  his desk at five o’clock and putting                                                  on his coat would say,                                                                      I’ve made enough mistakes today—                                                I might as well go home.

RJN