Michael J. Lippe’s Story – Pancreatic Cancer: A Patient & His Doctor Balance Hope & Truth
In December 2007, Michael J. Lippe was diagnosed with Stage IV pancreatic cancer.
It was inoperable and incurable.
On average, 20% of pancreatic cancer patients live one year.
Five percent live five years.
Median survival is four to six months.
Most of those who survive are among the 15% eligible for a surgical procedure known as the Whipple, which carves the tumor out of the pancreas.
Lippe was not eligible for this procedure because the tumor had metastacized to his liver.
His doctor recommended a combination chemotherapy regimen known as GTX, for the three chemicals in the treatment.
Lippe started on it the day after his doctor laid out his alternatives.
He chose not to wait for a clinical trial that started a month later.
A 2008 study showed that one-year survival increased to 43% on GTX.
Lippe’s tumor responded after the first treatment cycle.
In the cancer world, when a tumor responds, that means it stops growing or shrinks.
For Lippe, his tumor shrank.
A tumor marker that rises with pancreatic cancer, C19-9, went down 15% after Lippe’s first treatment cycle.
On diagnosis, his marker was over 5,000.
After a year and a half of chemotherapy, it was back in the normal range between 0 and 36.
In 2009, he asked his oncologist to co-write a book about his experience to help other pancreatic cancer patients.
The book, Pancreatic Cancer: A Patient & His Doctor Balance Hope & Truth, was published in 2011.
What Did He Learn?
Find the best medical center you can.
Although Lippe’s doctor disagrees, averring that there are many excellent cancer treatment facilities, Lippe is convinced that his decision to go to Johns Hopkins’ Sidney Kimmel Comprehensive Cancer Center, which specializes in pancreatic cancer, changed his odds.
Studies do suggest that rare diseases or difficult treatments are best undertaken in facilities familiar with them.
Lippe’s commitment to drive to Baltimore, Maryland, home of Johns Hopkins, from his home in West Virginia, for his chemotherapy treatments was no small burden.
He went the day before and stayed the night after so he would be rested.
His doctor, Dr. Dung T. Le, agrees that Lippe’s otherwise good health made it possible for him to withstand the entire chemo regimen, something she says is not common.
Pay attention to sudden weight loss, especially if you’re not on a diet.
Lippe didn’t have many of the symptoms associated with pancreatic cancer, which itself is noted for its lack of symptoms until late.
He had been having stomach difficulties for about a month and lost a lot of weight. He thought the weight loss was because his diet was working.
Though no longer, he had smoked in his teens and 20s and he was of Ashkenazi Jewish ancestry, both risk factors.
But, not uncommonly, he didn’t have most of the risk factors for pancreatic cancer:
- Newly-onset diabetes
- History of pancreatitis
- History of unexplained blood clots
Cancer is also a mental game
Cancer patients often struggle to keep up their weight.
Lippe decided that eating was better than not eating, even if some of his choices weren’t the healthiest.
He often relied on his childhood favorite, Spaghettios, because they slid down the throat easily.
Spaghettios aside, he and his wife had been going to the Farmer’s Market for four years.
“We tried to get as much of our food as possible from local producers.
“It tastes better, is healthier and helps support the local economy.”
He also quickly set himself tasks.
As he is a lawyer, perhaps it is understandable that he found setting up a will, a living will and a health proxy to make medical decisions for him if he could not, were his first tasks.
He made a list of insurance policies and credit cards.
These are the tasks doctors are usually referring to when they tell a patient to “put his affairs in order.”
As Lippe explains:
“Most of what was going to happen would be out of my control.
“However, there were things I could control and I think that for everyone these things should be the focus during the first weeks after diagnosis.
“At this point on their journey, one needs tasks more than goals….Goals come a little later.”
Once the dust settles, think about longer-term goals
Lippe started setting longer-term goals as his chemotherapy progressed.
Voting in the next election, going to his granddaughter’s high school graduation, living till the end of a rental car lease.
“These kinds of goals give your body and mind something to fasten onto, and to look forward to.”
Satisfy your concerns
Lippe was afraid that his death, when it came, would be painful.
He started asking and researching to see what happens physically when you die.
This led him to an answer, of sorts, but, more importantly, more comfort with the process.
“For someone with a long-lasting disease, the end comes as various organs in the body begin to shut down.
“There are many possible symptoms.
“I hope the path I take is to feel less and less like eating until I finally stop taking solid food…
“If there is pain, as is likely as the cancer spreads, this pain can most likely be managed. I will sleep much more.
“Gradually, I will slip into unconsciousness.”
His doctor added that she prepared Lippe for decision points in advance by telling him she would let him know when the burden of a treatment outweighed its possible benefits.
Take care of your caregivers
While early on Lippe felt entitled to be an imposition, he came to realize how much his condition was affecting his caregiver, in this case, his wife.
He began cooperating with her struggle to set rules for the visits of friends and family because of their additional burden on her otherwise.
Visitors should help, not just be waited on.
They should keep their visits short and they should be sensitive to a time-consuming treatment regimen.
He began to appreciate and facilitate her need for relief.
His doctor concurred, saying,
“While advising caregivers to take care of themselves as well may seem intuitive, caregivers may need permission to or an order to take care of their own well-being before they feel comfortable doing so.”
Lippe strengthened his relationships with his far-ranging children.
“While there is heartache, and despair, when you receive a cancer diagnosis, and when you learn that you only have a short time more in this world, there is also a kind of opportunity.
“The chance to strengthen relationships with the family that have weakened over the years is one of the most valuable opportunities.
“This happened with me.
“Receiving the love and concern of family and friends is heart-warming.
“Being able to return it gives added meaning to your life.”
- A note from a colleague
- Your kids wanting to come see you
- Your name mentioned in church
- Friends saying prayers
- CaringBridge website
- Being asked after by neighbors
- Care sent through people in town
“The support I received in response to these communications was heart-warming. It did help.”
Tell your doctor what symptoms you have. They may be able to help.
Lippe’s doctor said,
“While clinical depression is seen in people with various types of cancer, it is significantly more common in those with pancreatic cancer.”
Depression, cancer-related fatigue, pain – all are symptoms that may be relieved with drugs or an adjustment of the chemotherapy regimen.
What about alternatives?
Lippe suggests that while you not ignore alternative treatments, you not spend much time researching them either.
Evidence for their value is typically anecdotal, that is, individual cases, not clinical trials.
But, if you decide to follow one, tell your doctor what you are doing.
Give your life meaning
Lippe read a New York Times article by Henry Grunebaum, a psychiatrist and professor of clinical medicine who worked with a fellow therapist at Harvard who was dying.
Grenebaum asked the dying therapist for advice.
- Keep a sense of humor
- Do something that gives your life meaning.
Lippe wrote this book.
If you would like to read Lippe’s book, co-authored with his oncologist, Pancreatic Cancer: A Patient & His Doctor Balance Hope & Truth, click here to order it from amazon.
A friend of mine, when diagnosed, went to the bookstore and got all the cancer survivor books he could to see what people did who survived. These posts, reviewing cancer survivor books, are designed to help others on their journey.
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To you and your journey.
Carol Covin, Granny-Guru
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