Living with Cancer

Getting a Grip on Cancer Metastases

   Like many people who’ve had cancer and returned to “normal” life, I try to put it behind me most of the time. But it’s impossible to move on completely. Whether the fear surfaces in the small hours of the night or in the time that passes while waiting for the latest test results, we all wonder about cancer coming back.
   That’s why I was so interested in the news from Princeton University and The Cancer Institute of New Jersey this week identifying a tumor gene that is associated with breast-cancer metastases. 
  

Thank you so much...

for the remarkable wave of cards, emails and comments posted online honoring my dear sweet husband, Elliot. They mean so much to us. When I have written condolence cards in the past, they have always struck me as terribly inadequate to the task. Now that I am receiving them, I have to say they really help - especially the ones that mention funny anecdotes or touching memories of the unique and wonderful guy we miss so much. They are a great reminder of better days. When you read them all together, you get a vivid portrait and you can feel all the warmth for Elliot coming our way. We sincerely appreciate your kind thoughts during this very sad time.

In Memory of Elliot Pinsley

For the last 18 months, Leslie Brody has written eloquently about her husband’s journey through pancreatic cancer and her own journey as a caregiver. With her words, she showed us courage, joy in life, grace under pressure, and love, in all its painful, dirty details. Sadly, we report that on Monday, Dec. 15 – 28 months after his diagnosis -- Leslie's husband, Elliot Pinsley, died.

We welcome you to add your message below the obituary, which is printed below. 

By JAY LEVIN

Staff Writer

Elliot Pinsley, a journalist whose battle with pancreatic cancer was chronicled in The Record by his wife, Leslie Brody, died Monday.

He was 57 and lived in Montclair.

Mr. Pinsley, an editor with Bloomberg News for nearly a decade, had two tours with The Record, 1979 to 1988 and 1992 to 1999.

A meticulous writer and do-anything reporter, the Queens native covered numerous high-profile stories for the Record and made Page One his own. Within days of arriving at the paper, he was filing dispatches about the accident at Pennsylvania’s Three Mile Island nuclear power plant.

He covered the subway vigilante trial of Bernhard Goetz, the day care molestation trial of Margaret Kelly Michaels and the Baby M surrogate mother trial.

Shuttling between Shea Stadium and Fenway Park, he rode the emotional roller coaster with Mets fans during all seven games of the 1986 World Series.

And he vividly told of the violence and misery in Haiti after President Jean-Claude Duvalier was driven into exile in 1986.

“There is no electricity. When the sun goes down, Luly is dark,” Mr. Pinsley reported from a despairing village in the Haitian countryside.

“And of course, the people are poor. Many have no jobs, so they go hungry much of the time. A thin woman in a pink print dress holds out her hand to a visitor beseechingly. She pats her belly and then her mouth.”

“Pound for pound, Elliot was the best reporter I ever saw at The Record, or anywhere else,” said a colleague, retired Record columnist Jeffrey Page.

“And it was Elliot who taught me the difference between ‘meantime’ and ‘meanwhile.’ I remember saying to him, ‘You know this stuff?’Ÿ”

Mr. Pinsley eventually was promoted to assignment editor. He left The Record in 1999 to become a legal news editor at Bloomberg in New York. Most recently he was an arts and culture editor.

In 2006, Mr. Pinsley was diagnosed with pancreatic cancer, one of the most difficult types of cancer to treat. Beginning in July 2007, as part of The Record’s Living With Cancer series, family issues writer Leslie Brody shared much about her husband’s illness and her role as caregiver.

“We’re saddened to hear of Elliot’s death,” said Kathy Nugent, director of social service for CancerCare of New Jersey, a Ridgewood-based non-profit that provides help and hope to cancer patients and their families.

“Through Leslie’s sharing of her story, we were provided a glimpse into what life with pancreatic cancer is like. Life with cancer presents many challenges and uncertainties, and hope is vital in fostering our ability to cope and live with a cancer diagnosis.

“Elliot embraced hope. This was manifested in his work and his continued engagement with his family. He will be remembered for showing us that life with cancer can be lived with dignity.”

In addition to his wife, Mr. Pinsley is survived by three children from a previous marriage, Aaron Pinsley of Chicago and Kate Pinsley and Max Pinsley, both of Hackensack; two stepchildren, Devon Geyelin and Alex Geyelin of Montclair; his mother, Helen Pinsley of New York City; and a sister, Marjorie Humphreys of Dorset, England.

The family plans a private funeral and a January memorial service. In lieu of flowers, donations can be made to Memorial Sloan-Kettering Cancer Center, Development Office, PO Box 27106, New York, NY 10087-7106.

Call in for help with the stress of caregiving during the holidays

CancerCare, a national nonprofit with a branch in Ridgewood, will host a free telephone workshop this afternoon with advice on how to cope with the emotional strain of the busy holiday season when you may already feel overwhelmed with the demands of caring for a family member  with cancer. The season's high expectations for merriment, fine food and gift-giving can exacerbate your stress. Three experts from the MD Anderson Cancer Center in Texas and Continuum Cancer Centers of New York will give tips and answer questions today from 1:30 to 2:30 p.m.; click here to sign up. If you miss the session, you can download a free podcast and listen on your computer; click here to learn how.
We wish you the best over the holidays.

When do you play the "cancer card?"

A friend in a caregiver support group once described her mortification when her husband announced to people on line to buy movie tickets that "I have cancer, let me go first." My friend thought her husband had gotten too used to being coddled as a patient; even after the crisis phase of his illness had passed, he felt entitled to extra indulgence. She was embarrassed that he was exploiting his cancer to get unnecessary advantages.

I have thought about this anecdote often - when are families dealing with cancer justified in asking for special privileges? 

Dark humor when we need some light

My husband can always make me laugh. Sometimes his wit shines through his medicated haze at the most unexpected - and most welcome - moments.

There was a time last month when we rushed to the hospital because Elliot suddenly ran a fever, a sign of infection. By the time he was wheeled into a room he was delirious, making no sense when he spoke, and then he fell into a slack-jawed stupor. A doctor ordered a midnight brain scan to see if he'd had a stroke or if his cancer had spread to his brain. I was terrified.

Tylenol brought down Elliot's temperature and he returned to reality. Later that morning, a young doctor appeared at his bedside to announce "the brain scan's negative."

"Brain scan's negative?" Elliot replied. "Guess nothing's there. No brain."

Maybe you had to be there, but I found this response wildly funny, a reminder of the healing power of comic relief. We try to laugh when we can.

Beating the high cost of prescription drugs

    A front-page story on Sunday about paying for prescription drugs during this economic downturn provoked an outpouring of sympathy -- and tips from readers -- for a patient I interviewed. Due to insurance troubles, she did not have coverage for a $1,000-a-month injectable drug that keeps her multiple sclerosis from advancing, and she couldn’t afford to buy it herself.
    Many of the programs and foundations that assist patients with that chronic disease also help cancer patients, and others are specifically dedicated to cancer patients.
    Cancer drugs are so expensive that their cost, as it accumulates over years of treatment, can force a patient to max out on health insurance coverage, as I learned when I wrote a story about two cancer patients who had done exactly that.
    Here is a list of resources from the research for those two stories, and from reader emails. Please feel free to add your own suggestions.   

What hospice means to us

So this is our 10th day of "hospice " - a very scary word for what has turned out to be a  calm, kind, unobtrusive source of help. At first I couldn't bring myself to even utter the h-word; I skittishly referred to the hospice agency as a "new, more expansive nursing service" that would give us more assistance. I was afraid Elliot would be decimated by the word's somewhat misleading connotations of a place you go to wait to die.

For us, hospice has a different purpose; it aims to keep Elliot comfortable at home, and out of the hospital, as much as possible. He has reluctantly agreed to that version of hospice because he desperately wants to stay home with me and the kids.

Pizza Capers

My sweet, exhausted, way-too-thin husband has barely been out of bed since getting home last week to recover from his fourth long hospital stay this fall. Every day, even at home, he is hostage to almost four hours worth of IV antibiotics to fight serious infections. Sometimes he's so short of breath he needs a quick fix of oxygen from a machine that got delivered on Sunday by an in-home hospice agency (more on that another day.)
Yet this afternoon Elliot felt a little better. It took until 5 p.m. to get him up, showered and dressed, but he took advantage of a sudden burst of energy to hatch a plan. He craved just one slice of pizza from a Hackensack joint he loved going to with his kids when they were little. (He hasn't had pizza in two years due to medical restrictions.) So he plotted with his two grown sons and my 12-year-old boy to sneak out to Brooklyn Pizza. They thought I would say no, it's too risky, like some kind of Nurse Ratched, and their presumption of my disapproval made the whole scheme that much more delicious.
Truth be told, I couldn't be happier with their prison break. Seems to me if Elliot can get such a thrill from escaping the meds, tubes, and pokes, and can get so much joy from a simple piece of pizza with our boys, it's a beautiful thing.

An Insurance Impasse Ends

   Horizon Blue Cross and Blue Shield of New Jersey and Memorial Sloan-Kettering Cancer Center have reached an end to the impasse that made the Basking Ridge satellite cancer center an out-of-network provider.
   The two sides announced this afternoon that they had negotiated a long-term contract. Starting Dec. 1, Horizon members will again be able to use the Basking Ridge facility and pay in-network rates. Patients had been told over the summer that, as of Sept. 1, Basking Ridge would be out-of-network, meaning that many would have paid higher rates to receive their care there.
   About 1,000 patients, mainly from central New Jersey, were affected.
   With chemotherapy and radiation treatments taking place on a daily or weekly basis, many patients prefer care that is closer to home. And changing doctors or other caregivers in mid-stream can be very upsetting. While it’s good that this was resolved, it’s unfortunate that patients were caught in the middle of such a dispute.