- Associated Press - Saturday, December 3, 2016

FOND DU LAC, Wis. (AP) - Steve and Pam Hayward spent some of their Thanksgiving holiday preparing a “green” funeral, picking out environmentally-friendly shrouds and caskets as well as deciding what type of oak tree to plant at the cemetery.

While planning a funeral is not uncommon, planning your own - which doctors estimate will take place in the next three to six months - is unique, USA Today Network-Wisconsin (https://fondul.ac/2gYYPBQ ) reported.

Over the past 20 years, Steve, 58, has had eight different cases of melanoma, an invasive tumor often associated with skin cancer. He’s also covered in multiple atypical moles and many scars over his arms, legs, chest, and abdomen, as many of these moles have been removed.

On Oct. 15, he was diagnosed with pancreatic cancer.

Doctors say Steve is a FAMMM suspect. FAMMM syndrome, or familial atypical multiple mole melanoma syndrome, is a genetic condition marked by a family member who had malignant melanoma or by atypical moles of different sizes and colors. FAMMM syndrome increases the risk of melanoma as well as pancreatic cancer, according to the National Cancer Institute.

“That’s what’s really weird about this FAMMM syndrome,” Pam Hayward, an independent nurse practitioner and Steve’s wife, said. “Here you go through life and you have a couple of these melanomas, and all of the sudden, bam, you have pancreatic cancer as well.”

While the family can’t confirm where the genetics came from, Pam said the moles might have been caused by an excessive amount of time spent in the sun. Steve was stationed in both Mississippi and Texas during his time in the U.S. Air Force.

Currently over 32 of Steve’s genes are being tested for the syndrome, but the family’s genetic counselor says his history with multiple melanomas on both sun-exposed and non-sun-exposed skin as well as multiple types of melanoma makes the syndrome likely.

Pam calls the syndrome an “orphan” one, as the doctors her husband has seen have only started to test people after multiple occurrences of melanoma.

“Even among the medical community, I think that there’s not knowledge about this and this condition,” she said.

After Steve was diagnosed with pancreatic cancer over a month ago, he started chemotherapy every two weeks. He has decided he no longer wants to continue chemotherapy in order to focus on his family.

“(The chemotherapy) is taking a toll not only on me, but on my whole family, just having me lay around like a dead thing for over a week while I recover from (it),” he said. “(My children) need a father, my wife needs a husband, someone that can be there. I need to be there. If that’s the trade-off (feeling sick in order to survive) I have to have for maybe four more months, that’s a poor trade-off.”

For now, Steve stays at home with the family’s two younger children, ages 12 and 18, and is able to do little tasks to care for them. Neither Steve nor Pam is working, with Steve unable to do so and Pam having issues finding work close to home in order to be there for her family and do the tasks Steve cannot.

Being a nurse practitioner, Pam has seen many families go through end of life care and says living every day in the present is how she keeps her head above water.

“The idea of life without him is unbearable, so we don’t go there,” she said.

Steve, on the other hand, is as thankful as he can be that his doctors know when his fate is coming.

“In a lot of ways, it’s great, not in that (‘I know I’m going to die soon’) perspective, but you’re actually given a bit of a timeline to when you’re going to go, so your family can better prepare for this,” Steve said. “(It gives them time to) get our financial needs in line, get our placement in line, where everything is going to go, what are we going to do with all of this, (in comparison) to as if I had just passed away in the middle of the night.”

The extended family is hosting a benefit for the family to cover end of life care costs, as well as raise money for the family to use while Pam finds work after Steve’s passing.

Family-friendly fun - including live music, raffles, a silent auction as well as lots of food - will be served Saturday at Benson’s Hideaway, N4241 Boy Scout Drive, in Campbellsport along Long Lake.

Despite their financial woes, Pam and her family plan to make the most out of the next few months together.

“We go day-to-day,” she said. “We’ve always been positively-oriented. We’ve been surviving cancer for over 20 years and so we’ve focused on what really matters. We’ve made a decision: we’re going to laugh our way through this.”

___

Information from: The Reporter Media, https://www.fdlreporter.com


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