By Hannah Wallace

During Patrick Swayze’s two-year battle with pancreatic cancer, his wife of 34 years, Lisa Niemi Swayze, served as his caregiver. After Patrick passed away in 2009, she became a public face for dealing with terminal illness and the loss of a loved one, and an advocate for pancreatic cancer awareness. Her new book, Worth Fighting For, chronicles the couple’s experiences during the last years of Patrick’s life.

This Friday, Niemi Swayze, also an accomplished actor, director and playwright, will be the keynote speaker at Tidewell Hospice’s Compassion in Caring luncheon. We spoke with her on Monday about her marriage, dealing with loss, and the ongoing fight against pancreatic cancer.

Losing a loved one is such a personal experience. Why did you decide to share your story so publicly?

It was always our opinion that if you can’t take a bad situation and do something constructive with it, you’re not honoring that experience.

I’m a real crybaby, too. I tear up [during public talks]. It’s hard. Sometimes I’m very depressed afterwards. It does take a chunk out of me. 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. Otherwise, you stop remembering just how hard it was, just what that impact was. I get to remember what’s important in life.

By all accounts, you two had an incredible marriage, especially by Hollywood standards. What was the key to that relationship?

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. Over the course of being married for 34 years, we had our ups and downs, especially considering we were working in extremely stressful situations. But we were still the most important things to each other.

Do you have any regrets? Are there any conversations you wish you’d had with him before he died?

We were so busy being positive; we said were “realistic optimists.” We were going to hold space for miracles. We never wanted to talk about anything negative, but that also meant that there were some discussions we didn’t have, about any kind of 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. It wasn’t perfect, but it was my absolute best.

What do you miss most about Patrick?

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 can you give to those who are caring for someone with a terminal illness?

I always tell people, "Take care of yourself." It’s very difficult. I would’ve thrown myself under a bus if it would’ve made Patrick better—of course, then I wouldn’t have been in very good shape. 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?

I had incredible 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.

The most meaningful calls for us were people who were just checking in—“I’m thinking of you, I love you, call me back if you want to, but don’t feel like you have to.” That’s the thing: You’re living with this 24/7; when you get a break, the first thing you don’t want to do is talk about it with someone who just wants to handle their own fears about death.

You’re the spokesperson for the Pancreatic Cancer Action Network. What should people know about pancreatic cancer? What strides are you making in the battle against it?

It’s a merciless disease. 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—just signed by President Obama last month—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.

[Getting the bill passed] took everything we had, everything we knew. We are so passionate about fighting for our loved ones and the chance that they deserved. We’re a hard group to say no to. I know that Patrick would be extremely proud that his presence has brought all this to pass.

Click here to read Hannah Wallace's "Health Report" in our February issue.