We struggled to understand this disease and were starved for hope. But most of our internet searches just turned up complicated articles in medical journals and lengthy scientific treaties. It was like wading through an advanced nuclear physics class with the skills of a toddler...
And yet, one huge story kept popping up during those initial weeks and months of searching. The stories of Patrick Swazye's battle with pancreatic cancer. His was the face of familiar movies... like Dirty Dancing, Ghost and Roadhouse. His passing 1 year before mom's diagnosis on September 14, 2009 was still fresh in the headlines.
Those stories were largely in part due to the presence of his beloved wife, Lisa Niemi.
After Patrick passed away in 2009, Lisa stepped up to the plate and became a spokeswoman for the Pancreatic Cancer Action Network...
In a world turned upside down, Lisa Niemi was our touchstone. We watched to see how she handled this cancer nightmare. And learned much from her sweet, humble vulnerability...
In one particular interview she shares her heart in such an honest way that I found myself returning again and again to her words:
Losing a loved one is such a personal experience. Why did you decide to share your story so pub-licly?
A: If you can’t take a bad situation and do something constructive with it, you’re not honoring that experience. I tear up [during public talks]. It’s hard. Sometimes I’m very depressed afterwards. But at the same time, I have found it to be very, very valuable to me. That whole experience of being with him when [we knew] he wasn’t going to be in the world—there are things I don’t want to forget.
By all accounts, you two had an incredible marriage, especially by Hollywood standards. What was the key to that relationship?
A: Someone once said, “The way that you stay married for a long time is you don’t get divorced.” You just stay in there. Of course, the love has to be there. We never gave up on each other.
Do you have any regrets? Any conversations you wish you’d had with him?
A: We were so busy being positive; we said we were “realistic optimists.” We were going to hold space for miracles. But that also meant that there were some discussions we didn’t have, about any angst we had about what might happen. I would’ve wanted to talk with him more. But there’s no doubt that I was doing the best that I knew how.
What do you miss most about Patrick?
A: I miss everything about him. I miss his presence, I miss seeing him across the room, knowing that he’s right around the corner. I miss talking to him. I know he’s here with me in spirit, but I still miss him.
What’s the most important advice you can give to those who are caring for someone with a ter-minal illness?
A: Take care of yourself. It’s very difficult. I would’ve thrown myself under a bus if it would’ve made Patrick better. Being a caregiver is physically and emotionally exhausting. Take advantage of little breaks. I used to go to TJ Maxx. That’s a good two hours of not thinking about the illness.
What can friends do to support a caregiver?A: I had incredibly wise, wonderful friends who said, “If you need me, it doesn’t matter if it’s 3 a.m., call.” Mind you, that didn’t mean they were going to pick up. [Laughs.] Just the act of reaching out made an enormous difference to me.
You’re the spokesperson for the Pancreatic Cancer Action Network. What should people know about pancreatic cancer?
A: It’s merciless. Less than 6 percent survive to five years. Usually it’s in its advanced stages by the time it’s diagnosed. The average life expectancy is three to six months—which is why the tabloids could print that Patrick had died day after day. Of course, he said, “I guess they figure one day they’re going to get it right.”
The statistics have not changed in over 40 years. It’s the fourth-leading cause of cancer death in the nation, but less than 2 percent of the National Cancer Institute budget goes to pancreatic cancer research. This is a no-brainer that this needs to change.
The Pancreatic Cancer Action Network provides patient services, but we also lobby hard in Washington. We finally got what’s called the Recalcitrant Cancer Research Act, which deals with cancers with survival rate less than 40 percent. Pancreatic cancer is way at the top of that list. This bill compels the NCI to come up with a plan for addressing these diseases. I know that Patrick would be extremely proud that his presence has brought all this to pass.
* * * * * * * * *
During Patrick's nearly 2-years battle with pancreatic cancer, Lisa was his strong champion, caregiver and steadfast rock. After he passed away in 2009, she became a public face for dealing with terminal illness and a passionate advocate for pancreatic cancer awareness. Her book, Worth Fighting For, chronicles the couple’s experiences during the last years of Patrick’s life.
When celebrities and well-known people find themselves in this vicious cancer battle, they have a choice... to fight in private or take it public... we honor either choice and pray grace and strength over the fight in abundance.
The choice Patrick and Lisa made to share their private nightmare and the Hope they found, has turned his public battle with pancreatic cancer into a national conversation, and has been a galvanizing inspiration for me... giving me the push to take my own stand in solidarity against this horrific disease.
And that is Hope for today,
In Grace, Always,
Jane
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