Jan 1, 2019

On a Saturday morning, a wife wakes to telling signs that her husband is not well.

Before Sunday comes, a devastating diagnosis:  A young father has a one percent chance of surviving.

On a Saturday morning, a wife wakes to telling signs that her husband is not well. Before Sunday comes, a devastating diagnosis-- a young father has a 1% chance of surviving. The search is on for a life-extending treatment. Erin, who lost her husband Mike, and Erin's sister, Dana, share the deeply emotional experiences and daunting medical logistics of loving someone through a terminal illness. We hear from Erin first.

Mike was brilliant. Had a PhD in genetics. He was 44 years old at the time he was diagnosed with stage four pancreatic cancer and given three to five months to live. He was a great dad and a great husband. He was quiet, but he was tough and stubborn as heck. And he was a big, strong, and somewhat intimidating guy.

Do you remember the day that you found out that Mike had pancreatic cancer?

That was a day that was a paradigm shift for me and I guess really for us as an entire family. We woke up in the morning. It was a Saturday. I woke up, and I looked over at him. And he was yellow. He was jaundiced. I was startled, and I woke him up. And he looked at me. And he said, what are you doing? And I said, you're jaundiced. Your eyes are yellow. Your skin is yellow.

So literally like overnight.

Overnight. So they did a CT scan, and then they asked us to come in. And they sat us down across the desk from a doctor and said, we hate to tell you this, but you have a mass in your pancreas and lesions on your liver and in your lungs.

Wow.

And Mike right away said, what's it look like for me? Are things any better now for pancreatic cancer than they were years ago? And the doctor said no. He said, you have like a 1/2 to 1% chance of recovering from this disease at stage 4. So basically that was it.

So how did Mike's cancer change your life?

Before Mike was diagnosed, I was a very, very happy stay-at-home mom and wife. And I loved my life. And I got suddenly thrown into the caregiver position for him and for my children. I thought that would be when we got old. I had no idea it would be at 36. So it was very difficult. How did you feel when I told you about Mike's diagnosis?

We were in California. And I was with Dave and Mom and Dad. And you said, Mike has pancreatic cancer. So it was a very surreal moment for me because my first thought was that can't be right. Like someone's made a mistake. I didn't know a lot about cancer. At that point in our lives, we really hadn't been exposed. Nobody in our family had cancer until that point in time. That moment changed my life. I knew that I had to help my family. You're my little sister.

Then you asked me to help, to see what was out there in relation to clinical trials because Mike was not inclined to just do standard of care. That gave me a lot of purpose and a lot of focus because that allowed me to do something. So I spent the next five weeks combing through the internet about clinical trials and whatever opportunities that might be out there for Mike.

I'd read two sentences of a protocol and have to look 16 words up because I had no clue what I was reading. I learned a lot through that process. And I did find three or four trials that Mike could qualify for. And fortunately, he was accepted into a trial.

All the pieces kind of fit into place for us. And we felt very fortunate at the time. And then with Mike's response to the trial, he really regained his quality of life.

He did. He felt great on the clinical trial, didn't make him sick. So we had some really great time. He lived 19 months, which may not sound like a lot or enough. But it made the difference between Caitlin, who was 4, remembering him or not. We were able to go on some vacations. He was able to coach her T-ball team and take the boys camping, which was a really big deal to them. So we had that time. And it was really good time for us.

So Erin, as Mike's caregiver, what advice would you give to other people?

The biggest thing throughout the journey that I learned that I didn't know prior was that hope really is everything. And without it we had nothing. So being able to continue to have hope helped us to continue to fight. That knowledge is power. And patients should have that knowledge to be able to determine their own path. And as a caregiver, I learned that I had to be accepting of Mike's decisions for himself for his own path.

What surprised you about that journey? Mike got cards from not just throughout the country but from people he knew throughout the world. Every night, we'd go to the mailbox together. And we'd get his cards. And he would come back. And he would sit in his rocking chair and read those cards and just cry every night. And that was surprising to me because Mike-- he was a tough guy. He didn't cry. But that became his practice. And it was cathartic for him.

One of the things that stands out that surprised me was that his passing was very peaceful. It was very difficult getting to that point. But I can remember laying my head on his chest and listening to his last heartbeat.

And I whispered to him at that time. I said, it's OK. We're going to be fine. And his heart stopped beating. I think about that moment so often. And it sounds strange. But somewhere in my heart, that has become a beautiful moment for me.

A clinical trial gave Erin's family the gift of time. Turning heartache into hope, Erin and Dana made a gift to support the Conquer Cancer Foundation. Conquer Cancer donors have supported nearly 1,500 research projects to better treat patients like Mike. Join Erin and Dana. Make a gift to Conquer Cancer, and give the gift of time visit. Visit conquer.org/donate.