St. Louis Mission Co-Chairs Debra Reed and Tammi Scaife spoke with Community Engagement Coordinator Paula Mukherjee about their special friendship and shared mission goals. This interview has been edited for clarity and length.

Paula: What brought you to PanCAN?

Debra: My son, Kenny, had pancreatic cancer and passed away. I honestly do not know how we heard of
PanCAN PurpleStride, but we went in 2022. Tammi was there. I’ve known Tammi since she was five years old; she’s my daughter’s best friend.

Tammi: We were at PurpleStride, and it just came over her. I remember this like it was yesterday. We were in the middle of the courtyard, looking at the people preparing for the walk, and she said, “I think I'm going to join PanCAN and help them with their efforts next year.” I didn't say anything at that point in time, but in my mind, I said, “I'm going to help you.” We’ve been on that path as volunteers for PanCAN ever since.

Debra: We're very new but excited.

Paula: I'd love to hear about Kenny – what was he like?

Debra: He was a very giving person. Very opinionated. He was a very loving person. We miss him truly. He had many friends, and he would give you the shirt off his back.

He was an iron worker. I have his union shirt on today.

He lived for 15 months after his diagnosis. It was a horrible, horrible struggle. I wish he had known sooner. He would say, “My back hurts because I am an iron worker,” or “My stomach hurts because I didn't eat right.”

He did a clinical trial. That's something I want to say; he felt the clinical trial gave him five months with almost none of the pain that chemo gives you. Then, that didn't work anymore.

Now let Tammi tell the story because she can talk about him as a friend.
 
Tammi: Debra has known me since I was a little girl. Like Kenny, she's very giving and selfless. I don't think she has met a stranger. When you get to know her, you feel nothing but love.

Kenny was very loving, very giving. Did not mince words, for good or bad. You knew where you stood. Just because he may have come off as a little brash does not mean he didn't love you. It probably meant he loved you more. He is missed dearly. After he was diagnosed, his union members held a benefit. The outpouring of support for him was tremendous.

I think it speaks volumes that Debra’s still hearing stories about Kenny. Stories are what connect us. They’re a connection to Kenny, through somebody that knew him. I think it's important for his mom to hear that.

Debra: His sister Shiron was doing a workout and someone they went to middle school with came up to her. The woman said when they were in middle school, she and her twin were very homely and the only person who was nice to them was Kenny. She remembers it to this day: “It's not that he was just nice to us. He was the cutest boy in the class.” Those are things you don't know.

Paula: Thank you for sharing.

Debra: We just found out: his daughter, who lives in Houston, gave a presentation because her company gives to an organization every year. They donated $5,000 to PanCAN.

Paula: That's amazing!

Debra: We're spreading awareness! We’ve got one PurpleStride team in Houston, Kenny's AllStars. In St. Louis, we're KennysKrew.

Paula: What drew each of you to the Mission Chair role in particular?

Debra: We started out on PurpleStride, but we ended up on Mission. We got together and we looked through all the notes and I thought, “I want to do Mission because I want to get information out to people.” I feel that doctors don't know what to ask. The families don't know what to ask. I didn't even know what a pancreas was before this happened. Really, we do Mission to increase hope. I'd like to speak to churches and get a booth at a health clinic to tell you the signs of pancreatic cancer and questions to ask the doctors.

It is the most painful, horrible disease to watch.

When Kenny’s diagnosis came, he already had problems: his stomach hurt, his back hurt, and he had lost weight. I drove him to Portland for work and said, “Kenny, something's the matter with you.” He said, “Nah, nah. It's just the food I ate or something.” He was in Portland for six weeks and when he came home, the weight loss was an “Oh, my God moment.” He still said, “Nah, I just didn't eat right.”

I could not do this without Tammi because I am a Flintstone and not a Jetson.

Tammi: I could not do this without her and I'm barely a Jetson! I can click on Zoom because I have to do that for work.

I work in healthcare. It's important for a provider to step into the shoes of a patient sometimes. We may know what the body parts are, the anatomy and the physiology, but it's different being on the other side of the exam table.

The healthcare practice that I work for has three gastroenterologists. I visited two out of the three offices, and I was so surprised that neither of them had any type of packet to hand newly diagnosed pancreatic cancer patients. I’ve listened to what Debra has said about the questions they had and their experience when they were in the doctor’s office with the diagnosis being laid in their laps. If information from PanCAN would’ve been there, that would’ve been perfect. From a healthcare provider standpoint, that's what I would like to see.

And – I want to be able to express my love for Kenny through my passion for PanCAN.
 
Debra: I really want to be part of PanCAN growing in St. Louis. This year was the 15th anniversary of PurpleStride St. Louis.

My mother had lung cancer, but I have never seen anything like pancreatic cancer. It was hard, very hard to watch.

Tammi: That's a motivator, too.

Debra: Yeah, I wouldn't want anybody else to go through that.
 
Tammi: We want to increase awareness so people want to donate more and educate themselves more, so that they in turn can educate others.

Debra: The weight loss that caught everybody's attention – my daughter now says, “The minute I see somebody lose 10 or 15 pounds without trying, I'm telling them to go get their pancreas checked.” She just had this conversation with me. Never did it cross her mind that he had pancreatic cancer.

They were 11 months apart. They were twins, she used to say. I think it was harder for her to watch his decline. When she saw the first picture of him with no hair she said, “Oh, my God, that's terrible.” I remember telling her, “Shiron, he doesn't have a bad-looking head.” Look at it like that. You have to find the good things in it. It's been really hard. She misses him more than I think she thought she would.

Paula: What has the experience working together as Mission Co-Chairs been like?

Debra: I couldn't see it any other way. We'd be lost without each other.

Paula: What advice would you give to others who have experienced a loss due to pancreatic cancer?

Debra: It's hard to be there. We were lucky; Kenny had a wonderful wife who took care of him, and his daughter.

When we found out the first round of chemo didn't work, he went to the clinical trial. Then the trial was no longer working, and the second dose of chemo was just too hard on his body. The doctor said, “This is it. There's nothing else we can do.” Kenny looked at me and I looked at him and said, “Can I ask the hard question?” He said, “Go ahead, mother.” I asked, “How long does he have?” The doctor said “If he gets liquids and can eat, maybe three weeks. If he doesn't, maybe seven days.” We walked out of there, and we both cried.

It's hard. You have to have someone to talk to. You have to have someone to cry to. I cannot tell you how many times I cried, how many times I screamed that I was angry.

After he passed, I had a car accident and I had to clean out my car, my trunk. I don't do things like that. That's what Kenny did for me. I'm crying as I'm cleaning out the trunk and some girl in the place says, “Oh, my God, do you like your car that much? I'm so sorry. I'll get somebody else to do it for you.” I said “No, no, it's okay.”

He chose to give his body to science. It was not accepted by everybody in the family. It's what he wanted because he felt the clinical trial gave him something that he didn't get from chemo. You honor their wishes; even if you don't want to, you say okay, and you will get there.

I planted a tree in the park where I walk. I did it in his honor so I can see it every day. Today I saw the first couple blooms on it.

Tammi: I’ve got to get out there!

Debra: I get much comfort from that. People have to find what works for them. We celebrated his birthday around the tree. We celebrated the first anniversary of his death around the tree. You just cry – and don't ever feel bad about crying.

Tammi: My advice to people who have experienced a loss due to pancreatic cancer would be to give yourself permission to feel however you want to feel and allow yourself grace. You also have to extend a little bit of grace to the people around you, because a lot of times people don't know what to say. They don't know what to do. Find that safe place and know that you can be vulnerable, honest, and transparent. Sometimes that means just being able to cry.  

The other thing I would say to someone who has experienced a loss: you likely will not get over it, so figure out a way to live with the loss.  One of the ways to live with it is to find a way to continue the relationship and continue to include it in your life. A good example of this is the tree Debra planted. She is able to incorporate this tangible, living tree into her days as she goes for her daily walk. 

Debra: It comes and goes. You have a good day, and you have a bad day. It's a song you hear that can make you cry, or it’s a song that can make you laugh.

Kenny and I did a lot of road trips to Indiana. I would listen to Carole King, who he could not stand. He would say, “They call that a singer?” I’d say, “She wrote songs, you know Aretha Franklin?” He’d say, “She can write all she wants, but she cannot sing.” I heard her song the other day and it literally made me laugh instead of cry. That memory of him telling me, “How can you listen to this?”

He was very kind. He was my rock. The oldest one who thinks he knows everything. He was my go-to person. He was that person who could put you in your place and have a sense of humor about it. He was a very good person. He never wanted anyone to feel out of place. That was amazing to me.

Tammi: Just to speak on how selfless Kenny was – it was your birthday, right? He was celebrating Debra’s birthday and he was really sick; he passed away two and a half weeks later. The party was supposed to be for him. Tell the story.

Debra: He liked the blues, so his niece hired a band to play for his birthday in July. Somebody got Covid, and we couldn't do it. By the time we finally had the party in September, it was my birthday. You could tell he felt bad, but he got up. I think about that often. How did he do that? I got to dance with him, which I will never forget. I think, “You were in so much pain, but you did that for us.”

So yes, he was very selfless. I butted in on your story!

Tammi: No, it’s good! You had to tell it. Selfless, that’s what stands out. Strong and brave. He did not want to be treated any differently, until the end. He texted me and asked me to come over. I think the fluid was building up in his lungs because not long after that day, he was in the hospital having procedures to help with the symptoms.

We were outside talking, sitting on the porch. We were getting ready to go inside and he stood up and stood there for a minute. Naturally, I reached out my hand and he looked at me and said, “I don't need your help.” I was like, “Okay!” He was standing there, and he said, “I'm just waking up my knees, I need to get them going” because his legs were swollen. I walked to the door and opened it up. That was the wrong thing to do, too. He didn't need that.

We were inside for a minute, talking. We said goodbye, and I was walking out of the door when he called my name. In that somewhat rough Kenny tone, he called my name: “Tammi!” I turned around and he said, “I love you.” I said, “I love you, too.” I went back, and I gave him another hug. It was the last time I was able to hug him.

Paula: Is there any advice you would give to volunteers who are nervous about taking on leadership roles?

Debra: They need our staff partner Mariann Ivan to say “Oh, you can do this!”

Don't beat yourself up if you don't know what you're doing. If you're brand new, reach out. Hopefully, you have people in your affiliate as kind as we do. Just keep going, and tomorrow will be a better day. I don't plan on leaving. A lot of people get really involved in their first year and then drop out. Tammi and I are in it for the long haul. We're in it to get better and better.

Tammi: It can seem overwhelming. Just pick one thing to work on in the name of your loved one or in the name of increasing awareness and educating people, do that one thing, and the next year build upon that. Like Debra said, stick with it.

Debra: Lean on each other.

Paula: I am very glad we have you as volunteers. It’s really great to see you two working together. Thank you both so much for your time and especially for sharing about Kenny.

Please feel free to contact Paula Mukherjee (pmukherjee@pancan.org), Debra Reed (dreed@pancanvolunteer.org), or Tammi Scaife (tscaife@pancanvolunteer.org) with any questions.