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Editor's Note: Randy Pausch was a 45-year-old computer science professor at Carnegie Mellon University in Pittsburgh when he was diagnosed with terminal pancreatic cancer in August 2006. His inspirational book about living life to its fullest, The Last Lecture (2008, Hyperion), became a New York Times best-seller. Pausch died of complications July 25, 2008. In an ADVANCE exclusive, regional editor Amy McGuire talks with Pausch's widow, Jai, who shared her own story about those who "live in the moment" - the nurses who cared for her husband. After reading the article, participate in a blog discussion.

Randy Pausch, 47, died last year after a 2-year battle with terminal pancreatic cancer. Ultimately he lived longer than his prognosis, because in dying, he inspired others to live.

For Pausch and his wife, Jai, most of their final days together weren't so magical. Jai stood by her husband's side at several healthcare facilities spanning five states, in search of the best treatments for Randy's disease; and nurses were always there supporting them.

"From the very beginning, all the nurses we met were caring, competent and sympathetic," said Jai. "I know they had their own issues to deal with, but they didn't let their own personal issues interfere with Randy's care."

'In the Moment'

This includes the nurses at the University of Texas M.D. Anderson Cancer Center in Houston, where Randy received "the bulk of his chemotherapy and radiation treatments." One of the M.D. Anderson nurses taught Jai how to flush her husband's PICC line even though she admits being "very squeamish about blood and needles" prior to Randy's illness.

"I didn't have any medical training; however, the nurses taught me how to give Randy his chemo shot once a week, although eventually he started doing it on his own."

Recalling when Randy needed to undergo a procedure at the University of Maryland Medical Center in Baltimore, Jai remembers a radiology department nurse whose skills she compared to an artist.

"Randy hated to have his blood drawn or an IV put in because it was so painful and caused him so much anxiety," she said. "This nurse was so patient. She studied Randy's arm like a sculptress studies art. She used a warm towel compress, and very gently and slowly put the IV in on the first stick. He felt so much peace; his anxiety went way down. We had so many positive experiences like that."

The common quality of all the nurses was their ability to be "in the moment," Jai said, much like the central theme of her husband's book The Last Lecture.

Though nighttime hospitalization was frustrating for him, Randy's experiences with the nurses on one shift at M.D. Anderson showed Jai the true spirit of their profession.

Michelle Reiss, PhD, RN, CS, assistant director at the University of Pittsburgh Medical Center School of Medicine, helped Randy and Jai Pausch cope with the psychosocial affects of his terminal illness.
Read more about her.

"Randy was so sleep-deprived," she said. "He was an incredible grouch and even put a 'Do not enter! Refuse all services!' sign on his door. Randy knew one-tenth of what the nurses did, but told them 12 ways they could be doing their job more efficiently.

"One night, Randy asked the nightshift nurse to do his vitals at midnight rather than 3 a.m. and the nurse said, 'OK. We understand and we can make this happen for you.' It was no longer the nurses' constraints versus Randy's desires, but a true partnership.

Drive to Stay Alive

That feisty spirit pushed Randy to write The Last Lecture in October 2007, which Jai said was therapy for him.

"The project kept him really busy," she recalled. "But once the book was done (in January 2008), he was done. His quality of life was going downhill. The gemcitabine stopped working."

Randy had been taking gemcitabine, a nucleoside analog, and Tarceva (erlotinib hydrochloride) - drugs designed to block tumor cell growth - in an effort to "buy more time," Jai said. "Gemcitabine works for a lucky 7 percent of pancreatic cancer patients. Randy began focusing on a 'magic bullet,' but he was becoming so fragile."

Jai said Randy was determined to stay abreast of new cancer research and would call his physicians regularly for hopeful news.

Preparing for the End

In September 2007, the couple and their three children decided to relocate to Chesapeake, VA, so they could be close to Jai's family when it came time for Randy to receive palliative care in the final months of his life. His oncologist referred him to Sentara Healthcare.

There, the Pausches met Wanda Wyatt, RN, CHPN, clinical supervisor at Sentara Healthcare. Wyatt introduced the couple to the agency's "bridge" program, which is designed to assist patients who have received a terminal diagnosis with a life expectancy of 1 year or less. The program protocol allowed Randy to receive the benefits of hospice care while continuing to pursue aggressive treatment for his illness.

"The bridge program eases the transition from curative to palliative care, and is a way for patients and caregivers to accept the terminal diagnosis," Jai said. "It also provides support to maintain the best possible quality of life in emotional, social and spiritual well-being." 

The Last Lecture by Randy Pausch - Audio Interview with Jai Pausch:



Beyond The Last Lecture

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I read with great empathy, your wonderful article.
I had followed Randy and Jai's story. I admired his fight and dignity. He gave a wonderful gift to many people.
I am a widow of a person who fought pancreatic cancer for 6.5 years. I am also an R.N. who cared for him to the end. As an nurse and one also as a home health nurse, I had to learn the diference between the professional me and the wife me. We had much great support from hospice. It was an honor to care for Marty at his end and that was what I have come away with.
I now belong to The Pancreatic Cancer Network and hope we eill be able to end this disease and find out why there is an increase in it ,I think.
I hope that you, Wanda and Jai always stay connected.
Please feel free to share this with Jai and continue your good work.
God Bless,
Miriam Stamm


Miriam StammNovember 12, 2009
Philadelphia




     

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