Darrin Godin: Hello and welcome to Talking Hope. I'm Darrin Godin and I'm pleased to be speaking with two-time cancer survivor Kathy Miller Willahan. After initially beating breast cancer in 2002, Kathy Willahan never expected to deal with a second cancer diagnosis over a decade later. Thanks to a second opinion she received at City of Hope, Kathy received lifesaving treatment and compassionate care that gave her another chance at life. And if you watched the Rose Parade on New Year's Day, you saw Kathy riding on the City of Hope float, celebrating joy and the music of life together with her physician and other survivors and other physicians from throughout the City of Hope Cancer system. It was a beautiful sight, and today Kathy's looking beautiful and she's with us today on our podcast. Kathy, thank you so much for joining us today.
Kathy Miller Willahan: Well, thank you for inviting me.
Darrin Godin: Before we jump into our discussion, Kathy, let me give a little background for our audience. After your experience with breast cancer and five years of attempting various types of treatments, your cancer kept returning, and then you came to City of Hope where you met Dr. Tanya Siddiqi, a renowned expert in lymphoma and other blood cancers, and together you move forward with lifesaving CAR T cell therapy. So, I usually ask this question toward the end, but Kathy, what does hope or the concept of hope mean to you?
Kathy Miller Willahan: Well, hope means positive. It means there's something to look forward to. It's just like this positive outlook that there is something like every day you can look forward to a new blessing. Every day is a gift, and that's what hope means to me. I think that my experience with cancer and where hope came for me and helped me was that my body had cancer. I didn't have cancer. My brain, my soul, my heart, I didn't have cancer.
Darrin Godin: It didn't define you, right?
Kathy Miller Willahan: It did not define me a bit, no. Maybe a couple days here and there, but generally, no. It did not define me a bit. And I think I was very fortunate to have the dedicated doctors and all the research and knowledge that the doctors at City of Hope had, which helped me through the process, because it continued to give me hope that there was a chance that I could live, because my cancer was not a type that you survived from until CAR T came around.
Darrin Godin: Wow, that's a powerful statement right there. It wasn't a type that you survived from, but you were offered a lifesaving treatment. And here you are-
Kathy Miller Willahan: Absolutely.
Darrin Godin: ... Today and you're doing well.
Kathy Miller Willahan: Yes, I'm doing fabulous. Yes.
Darrin Godin: I'm celebrating with you today, Kathy.
Kathy Miller Willahan: Yes, thank you.
Darrin Godin: You are so right. Every day is a gift.
Kathy Miller Willahan: Yes.
Darrin Godin: Thank you. So, about CAR T, you certainly know for our audience, city of Hope is an international leader in CAR T cell therapy, which involves taking your T cells, a patient's T cells, which is a type of white blood cell that fights disease, taking it from your blood, essentially reprogramming those T cells …
Kathy Miller Willahan: Yes.
Darrin Godin: ... Putting it back into your body through infusion, and then sending it on that mission to detect and destroy cancer cells. Not an easy process, not a fun process, I'm sure, but a process that works, right?
Kathy Miller Willahan: Yes.
Darrin Godin: So, you've described your recovery as a kind of rebirth. Tell us who and what got you through emotionally, physically, mentally.
Kathy Miller Willahan: Well, at the time that I did it, which was also during COVID, I was in the hospital for almost a month and I had three days of chemo. They gave me two days of rest, and then they put the warrior cells as I called them, the warrior T cells back in my body. And I think the whole experience of all of my care team, the people at the hospital from the people that did the housekeeping, to the people that brought my food to the fabulous food that they served, to the nurses, to the staff, everybody was so positive. And that just encouraged my attitude. It kept my attitude up and going and ready for it. They also reframed a lot of stuff for me here. I'm really scared when I'm going to get these T cells injected back into me, but they commit, "Oh, you only have two more days so you can have your birthday."
They counted the day that I got my T cells as my birthday. They reframe things like that. And I wasn't completely buying into it, because I was scared, but it helped my attitude, everything helped my positivity. And then I had a few days where I was out of it, I guess, based on that normal reactions of what happens when these cells get put back into your body when they're starting to do their fight. But afterwards, it was, again, it was the same thing. It was the support I got from the staff. It was the support I got from my family, from my friends, and it was actually a very intriguing process. I was fascinated by it even when I was going through it. It was fascinating.
Darrin Godin: Wow. What is the story about some little feet that they gave you? What is that about
Kathy Miller Willahan: I have them. This is one of the things that City of Hope did so well, is they had activities and I got these little feet from walking, you had to walk a mile to get a little foot. And at first I started walking, because I was really doing well the first, I don't know, seven, probably about eight or nine days. So, I could walk a lot and first couple of days, "Oh no, I don't need these little feet. I don't need a motivation." But then I said, "Well, yeah, they're sort of cute." And I realized that they do stuff there to motivate you, and it became a motivation. In fact, my little feet motivated other people. One of the guys, his wife told me that he was in there and his wife told me that he wanted to get as many feet as I had.
Darrin Godin: Wow.
Kathy Miller Willahan: And then I've got two bicycles, because if you ride five bike miles on one of the stationary bikes, you get little bike, I don't know if you can see these little bicycles.
Darrin Godin: Yep.
Kathy Miller Willahan: I got bicycles and then I got this little walking person, but it made it more enjoyable. It gave me something to look forward to when I felt good enough to get up and walk around and do stuff. And they did a lot of that. They had therapy dogs in there, they had little crafts. I was recovering after the effects of the CAR T. They brought me puzzles. I was working on puzzles for 5-year-old kids, because your brain swells up during this, but they provide all that stuff for you and they encourage you, and they reframed everything for me and everybody was just wonderful. That whole package and being at a comprehensive cancer center [inaudible 00:07:58] happen, because everybody knew in a sense what I needed, I guess.
Darrin Godin: You've used that phrasing reframed a couple of times. Talk to me a little bit more about that. Why is that so important?
Kathy Miller Willahan: Well, because cancer is a very scary thing. And I think I've had to do a lot of reframing in my own mind about cancer. And especially since for me, I thought of this cancer, my lymphoma, not so much my breast cancer, but from my lymphoma, I thought about it as a death sentence. I had to reframe that to think about it differently. I had to start looking at every day as being a gift and not to look at cancer as a horrible thing, but as a way for me to see other parts of myself and to look for the good things that it could bring out.
And I think surviving cancer and doing it positively, you have to reframe everything. You have to reframe the fear that you have. In fact, I will show you this one other thing that one of my friends gave me in this bout with cancer, and it says, "Hope is the only thing stronger than fear." And so these are motivating factors. It's reframing the fear that you have into hope, and into thinking that there will be a better day. If you don't feel good this day, tomorrow you're going to feel better, or it's just looking in the future.
I wanted to see my grandkids get married. My grandson got married right before I went in for my treatment, and my granddaughter's now getting married in another year. But it's like having things to look forward to and getting away from the stigma of cancer and so that's why reframing is very important to me and it helps me a lot.
Darrin Godin: Thank you for sharing that. Here in Orange County, we are saying hope first and we'll talk a little bit more about that as we close, but hope first, right? You have to start with hope.
Kathy Miller Willahan: Yes, you do.
Darrin Godin: And that's a great thing. You've said cancer doesn't define you. You've talked about your future. So, tell us more about yourself. I understand you have a new grand baby.
Kathy Miller Willahan: Yes, I do.
Darrin Godin: Tell us more what you're looking forward to doing and what you enjoy doing most right now.
Kathy Miller Willahan: Well, I love playing pickleball. I had to give up tennis at 70, because it was just too hard on my body. So, I play pickleball four times a week probably. And I've got so many friends there at pickleball, so that's one of the things I absolutely love to do. It gets me out, it gives me my exercise, it gets me out of myself and just have a really good time. So, I'm very, very fortunate for all the friends that I've made, both through tennis, through pickleball, and they've been so supportive of me, that it's amazing. My husband and I do some traveling, we have a motor home. And that was put on a little bit of a hold, not total on a hold the last five... Really, it's been seven years now, but since I was first diagnosed. But we like to travel. Yeah, I love spending time with my family.
Darrin Godin: Great, great. And the new great grand baby actually, right? Is that the?
Kathy Miller Willahan: Yes. I've been going over there lately for three or four hours in the afternoon. I'm going to try to do it every week now and just to sit on the floor with him and play with him and let his mom get taking care of other things that she needs to do.
Darrin Godin: Yeah.
Kathy Miller Willahan: Yeah.
Darrin Godin: That's wonderful, and I love hearing this story from you, Kathy, because in addition to sharing what you've been through and how City of Hope has been there for you, I love that you're looking forward to the future and look at all the things you get to enjoy now, and I'm so happy for that, so...
Kathy Miller Willahan: Yes, thank you. So am I,
Darrin Godin: Great. You have a good pickleball community around you? I hear they're a very competitive group, but also very supportive of each other.
Kathy Miller Willahan: Yes. I belong to a club that was a tennis club and now we have 38 pickleball courts.
Darrin Godin: Wow.
Kathy Miller Willahan: So, it's fun. And you know what? Nobody takes it real seriously.
Darrin Godin: Yeah, good times.
Kathy Miller Willahan: Good times.
Darrin Godin: So, let's talk about getting a second opinion. Essentially, you've said getting a second opinion really was a turning point for you. So, from your perspective, what are the benefits of getting a second opinion?
Kathy Miller Willahan: I would first say that it's hard for people to step out and get a second opinion, because when you get cancer and you get referred to an oncologist and you're putting your life in his hands or her hands and you want to just... It's hard to think about going to get a second opinion at that point, because you're scared and you don't know what's going to happen and you want to start treating it. And I waited long before I got my second opinion just for that. And I tell everybody now, get a second opinion now. And I like the idea of a comprehensive cancer facility, because to give you an example, after I met Dr. Siddiqi and she talked to me about, told me all these options, when I went in for my first appointment after that, when I said, "Yes, I want to do CAR T." They had me scheduled from I think six o'clock in the morning to start my blood work, until about five o'clock in the afternoon to meet Dr. Siddiqi. And they did all the tests. They did everything in that one day.
And then I met with Dr. Siddiqi and she had the results from almost all the tests. Now, that's what a comprehensive cancer center can do for you. Otherwise, you'd be going over here to get your ultrasound, over here to get your CAT scan here to do that. And nothing was, but they scheduled everything together and it was an exhausting day, but it was fabulous. And I just felt like they took such good care of me. So, I think that's one reason to get a second opinion, especially if you go to a comprehensive cancer center.
Darrin Godin: Kathy, let me ask you this question. For patients who might be in that same situation, they received a diagnosis, they're fearful, they're trusting in the expertise of the person that has given them the diagnosis, how do they advocate for themselves? Or maybe it's a loved one for them. What do you recommend? How should they advocate for themselves to say, "I would still like to get a second opinion." Or, "I would like to go somewhere like a comprehensive cancer center like City of Hope where there might be a higher level of expertise." What's your recommendation there? How do you advocate for yourself or a loved one?
Kathy Miller Willahan: I think that you just have to do it. You just have to. And even I had asked my doctor one time about a second opinion, and he said, "Yeah, sure. Go ahead, get one." I don't think doctors care. I think that most doctors, they want to give you the best treatment. But at a comprehensive cancer center where they do all this research and they have all these trials, that's where I would... I recommend that to my friends now. I say, "Go to City of Hope. Go to City of Hope." In fact, one of my other friends who's dealing with a pretty bad cancer, she just made an appointment at City of Hope and a couple of years ago I suggested it, but she wasn't ready for that yet. But I just say that we have to be our own advocates, or we have to be an advocate for a loved one.
It doesn't hurt. You're not going to hurt your doctor's feelings by going for a second opinion. And I just think it's, in hindsight for me, I waited probably too long, but everything's still worked out. But do it from the beginning, go where they have all these services and everything is comprehensive and you save yourself a lot of time and worry. I just can't tell you enough about City of Hope. I just...
Darrin Godin: Thank you. In addition to riding on our Rose Parade float, you signed one of the construction beams before it was installed at what's going to be or what will be Orange County's only hospital, 100% focused on cancer treatment. The hospital will be connected to the City of Hope Orange County Lennar Foundation Cancer Center, which is where you have go for your follow-up appointments.
Kathy Miller Willahan: Yes.
Darrin Godin: How did that moment make you feel signing that beam and knowing that your name will forever be a part of the structure of what City of Hope will be able to provide in terms of care and compassion here in Orange County? How did that make you feel?
Kathy Miller Willahan: I was so proud and humbled at the same time when I first walked into the Lennar Cancer Center and walking up to it and it brought tears to my eyes. I saw this beautiful building, and when you go inside this glass, the wall in the back is glass. And I thought to myself, "Oh my God, people care enough about people like me to build something like this, to care for us, to care for future generations, to donate money to make this happen." It brought tears to my eyes.
And then when I went inside and there was that, it was a plaque from one of the workers that was working on the building and it's framed in there, and he wrote a message about his mother who passed away from cancer. I actually had tears streaming down my face. So, for me to be able to sign that beam and to feel such a connection to what this building represents and what it can offer for people, there's just really no way to explain it. I was I was awed. I am even tearing up a little bit now thinking about it.
Darrin Godin: Yeah.
Kathy Miller Willahan: It was a very, very special thing for me to be able to do.
Darrin Godin: Well, you're part of the legacy now, and for so many of us who have the privilege and honor to work here at City of Hope, it is a truly special place. It's not just a job or an employer. We see the lifesaving difference that it's making for people like you, for people like our friends, our family, our neighbors, and we certainly feel that with you. All the fields come to us, and it's nice to know we're part of that legacy. So, unfortunately, statistics are showing that one in three of us will hear those words, "You have cancer." So, what is your message for others today who may be facing a cancer diagnosis or maybe are walking with a loved one or someone they love through a cancer diagnosis? What's your message today, Kathy?
Kathy Miller Willahan: Well, I think my message would be that you're not alone. Like you said, one in three people will, in their lifetime will get this diagnosis. And I think the most important thing is to stay positive and to get support. I know it's easy to say stay positive, but how do you do that? That's another issue. And I would just tell people to be aware of what they're feeling. Don't deal on things you can't control. You can't control the fact that you have cancer. You can control the fact about where you go for treatment, how you think about it, how you think about... How you get rid of the negative feelings and think about positive things. Think about every day as a gift and that every moment and to try to continue your life.
Yeah, you're going to have setbacks. Yes, it will change, but you still have life. You still have every day to look forward to and a lot of good times ahead of you. And I think that is my best message for people, is to stay positive, get rid of drama in your life. Get rid of negativity in your life, and control what you can control and don't worry about those things you can't control. And that would be my message.
Darrin Godin: It's a beautiful message. It's a beautiful message, Kathy. Thank you so much for sharing your incredible spirit and your joy with us today. It's so evident. Your story is a reminder for all of us that at City of Hope, no one walks alone. We often say when we take a patient's hand, we never let go. And we truly mean that. We know that navigating cancer is never easy, but as we talked about early, we believe it starts with hope in so many ways, it starts with hope. Hope first. And your survivorship journey, it really truly brings that home. So, thank you for sharing that with us today, and thanks for being with us on the podcast today. And I just want to say thank you to all of you who are listening and participating in the podcast. We hope it's a blessing to you and we hope that it's giving you good information and information that helps you and messages like Kathy, we really hope they inspire you. Thanks for joining us, and we'll see you on the next episode of Talking Hope.
Kathy Miller Willahan: Thank you.
