Talking Hope: Living with multiple myeloma, living the promise of hope: Meet Todd & Diane Kennedy

Talking Hope is brought to you by City of Hope, an NCI-designated comprehensive cancer center and Orange County’s most advanced cancer care. We bring together renowned cancer experts, grateful patients and leaders in the cancer community to share vital conversations, personal journeys and unique insights into the disease that is diagnosed in one in three people during their lifetime and impacts us all. 

A multiple myeloma survivor, support group leader, cancer coach, and optimist, City of Hope grateful patient Todd Kennedy and his wife and care partner Diane inspire their family, friends and care teams with their courage and perseverance. Committed patient and research advocates, Todd and Diane share powerful testimony about addressing the challenges of living with a rare blood cancer, the reasons for myeloma patients to be hopeful, and the blessings that have come out of their journey. 

Make an appointment: call 888-333-HOPE (4673).

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Darrin Godin: Hi, I'm Darrin Godin, Chief of Staff for City of Hope, Orange County, and this is Talking Hope. Today, I'm talking hope with Todd and Diane Kennedy. Todd is a grateful patient of City of Hope, who together with his wife Diane and their family, is living the promise of hope through a rare blood cancer journey. Welcome Todd and Diane, it's really great to have you on the podcast today. 

Todd Kennedy: Thanks, Darren. 

Diane Kennedy: Thanks. 

Darrin Godin: So Diane, take us back before Todd's diagnosis and tell us about your family and what was important to you as a mom and as a wife. 

Diane Kennedy: Sure. Well, Todd and I met in college and we've been married now for 33 years. We have two sons who are 27 as of last week and then about to be 22. So right before Todd's diagnosis, our oldest son was in college, our youngest son was a junior in high school and we were very active in our community. Our boys both played hockey all through their childhood. Our oldest had one state champion, our youngest was up to up for that, he was in competing and on course for that. So we were hockey parents doing that crazy thing both of us. 

Todd Kennedy: Crazy hockey parents. 

Diane Kennedy: Yeah, crazy hockey parents. He was a goalie. Our youngest was a goalie and so we were- 

Todd Kennedy: Junior ducks. 

Diane Kennedy: Junior ducks, and super active and walking the trails, we loved hiking around here, so we were busy just doing that family thing. 

Darrin Godin: Awesome. 

Todd Kennedy: Living the Orange County life. 

Darrin Godin: Awesome, living the Orange County life, I love it. So Todd, walk us through what was happening that eventually led to your diagnosis and how that news really impacted you and impacted your family. 

Todd Kennedy: Yeah, sure. Well, like Diane said, one of our favorite things to do here in Orange County has been to walk all these beautiful trails. And so we were on the trails all the time and after just a ton of miles and many, many years, I started getting a little bit of back pain. I just figured, "Hey, I'm getting older." But finally, Diane talked to me into just, "Hey, go see your orthopedic surgeon. He might just give you another epidural shot. It's no big deal." 

So I went into him and a couple weeks before Christmas, and then I went on the day after Christmas in 2017 to get the results of this MRI he wanted to do. And he said, "It's no big deal." So Diane didn't even come with me to that follow-up appointment. And I was in the exam room and I looked down the hall and I can see him coming towards me and I thought, oh no. I could tell even before he opened his mouth that this was not going to be what I expected because I could see on his face this incredible concern. 

And he walks in the room and he didn't waste any time. He just says, "Todd, I'm so sorry. I have your MRI results and you've got lesions up and down your spine. And I'm surprised he said, but it's clear you have cancer. And I'm like, "No, you got the wrong report, that's not me." Because I'm healthy, I was 52 at the time. I was arguably, I think in the best health of my adult life and no family history, no indications whatsoever, this was just supposed to be something simple and routine. And he says, "No, you got cancer and good luck, it's the day after Christmas." It's never a good time to hear that news, but certainly it's not a great time a day after Christmas so. 

Diane Kennedy: At the time, he didn't know what type of cancer either. He thought it was either multiple myeloma or it was stage four colon cancer that had spread and metastasized to the bones. It was one of the two. And then good luck. We're calling office after office trying to figure out what does he have, where do we go? 

Todd Kennedy: We really fumbled around too for almost two weeks trying to even confirm the right diagnosis. And we didn't know where to go, we were literally begging to be seen. And finally got some tests done that confirmed that I have multiple myeloma. It's a relatively rare blood cancer, very complex, and we really didn't know where to go. And we asked our friends and we said, "We'll go anywhere. We'll travel to the East coast, we'll go down to Houston, wherever." And people kept saying, "You need to go to City of Hope. You need to go to City of Hope." And we didn't know what City of Hope was actually, we had not heard of it. Cancer was not part of our family story so we just called and took it from there. 

Darrin Godin: Wow. So before we jump into, I'd love to hear more about your treatment journey as well, what does that do to you and then how did you tell your boys and your world was upside down, right? Talk to us about that. 

Diane Kennedy: I think in a perfect world, we would've had time to digest it ourselves a little bit. But like we said, it was the day after Christmas, our college son was home, we had plans, activities, we had family visiting from out of town and everyone knew Todd was going to this back appointment, a doctor appointment, and then going to be back. And we had plans and things to do and we didn't have the luxury of time to digest. We had to just be honest and open right out from the front. 

And in the end, it wasn't the way we planned it, but it turned out to be a great thing because everyone has been with us on the journey from the beginning and we taught our boys that cancer is not something you hide from, your health is not something you ignore. And they've learned right from the start how to be advocates for themselves and has watched their dad do all that he has done to make sure that he's around for a long time. And they have that now in their mind of how you handle when you get these news, what you do is you advocate, you get to the best place. they got to see from day one what that meant. 

Darrin Godin: Yeah. Almost a blessing that your son was home. I mean, normally you'd probably want to create the story and everything, but having them there is probably like you said- 

Diane Kennedy: And they us process it, the whole thing from the shocking news to the denial, "It's not mine, you must have gotten the wrong MRI," to the, "Okay, let's rally the troops, let's call out to where should we go? Let's make the phone calls and do the work to get to the right place." So they learned that lesson along with us. 

Todd Kennedy: And I think it's one of the earliest examples of the unexpected blessing. That's not the way we would've anticipated it would've happened or if we had been able to design it, we would've said, "Oh, let's process this and then we'll tell them and we'll get some counseling on how to tell them and all that other stuff." But I think it just worked out, and there have been so many unexpected blessings along the way where the path took a different turn, but in hindsight, you think, boy, that was good. That was a really good thing that it went that way. 

Darrin Godin: So you make your way to City of Hope. Did you find out that you had multiple myeloma before you were at City of Hope or once you arrived at City of Hope? 

Todd Kennedy: No, I did. I had had a local biopsy that confirmed the diagnosis. 

Darrin Godin: And before we go on to your treatment then, some listeners may not know what multiple myeloma is, so can you give us that in layman's terms and how it affects you? 

Todd Kennedy: So it's a blood cancer, it's the second most common blood cancer. There's about 160,000 of us living in the US, about 35,000 newly diagnosed. And it's a cancer of plasma cells in the bone marrow. And so these are white cells, and you need healthy, normal white cells to fight off infection. And that's one of the biggest challenges of a myeloma diagnosis is your risk of infection. So really a crummy time to be immunocompromised in the age of COVID, right? So when COVID's running wild and everybody's saying, be aware and thoughtful about your immunocompromised neighbors, people might have an image of what that looks like. Well, that's me. 

That's me and so many other patients that are dealing with cancer or other diseases of the immune system. So that's what myeloma is. And the tricky part on it when you do a quick scan on Google, which is mixed, whether or not you want to do that or not but you find out quickly that there's no cure. That's kind of the bummer part. But there's a lot of reason for hope because the pipelines are extremely full and there are breakthroughs coming month on month. And so there's justifiable reasons to be hopeful that a cure will arrive in the not too distant future. And some of that incredible research is of course happening right there at City of Hope. 

Darrin Godin: That's no cure yet, right? 

Todd Kennedy: No cure yet. 

Diane Kennedy: Right, that's it. 

Darrin Godin: Hopefully in our lifetime we will see that. Yeah, absolutely. 

Todd Kennedy: Everybody likes to say it's an incurable cancer, I say, "By incurable, do you mean it's impossible?" I don't think that's true. It's just not curable yet. It is possible and we will get there. 

Darrin Godin: Yeah. I believe that. Tell us about your treatment journey then with multiple myeloma. Once you got to the City of Hope, what has that look like? 

Todd Kennedy: Yeah, the first interaction in our desperation and those couple weeks after Christmas fumbling around and people said, "Go to City of Hope." I ultimately just called the 800 number. It was a Friday afternoon of a holiday weekend and I picked up the phone at 4:00 and I called and I just said, "My name is Todd, I've just been diagnosed with myeloma." And I will never forget it, there was this incredibly compassionate operator on the line, and her name was Kim. I'll never forget her name even. And she said, "We can help you." And after what we had been through in those previous two months, I lost it, to be honest. And I almost still lose it every time I tell this story because we were in such a difficult spot and just to hear, "We can help you," was the very, very start of our City of Hope experience. 

And I was on the phone with her for just a couple minutes. She verified my insurance. I told her, I said, "I hear Dr. Amrita Krishnan is terrific and if it's possible I'd love to see her." And she said, "Send her an email." And I said, "Okay, I'll send her an email." And so we wrote her an email and Dr. Krishnan got right back and said, "Yes, absolutely. I look forward to seeing you." I was in her office three days after I made that initial phone call. 

Darrin Godin: And started treatment the very next day. 

Todd Kennedy: And started treatment the very next day, which was my 53rd birthday. And to be honest, the drugs that were flowing through those IV lines was probably the best birthday gift I could have ever had because I had not only the treatment, but I had the confidence in the treatment plan that Dr. Krishnan laid out because she is one of the foremost authorities in myeloma, not just in California, but in the world. 

And so from the very start, her expertise was crystal clear, and that gave me incredible confidence that I had the plan that was going to ultimately lead to my successful treatment and high quality of life. And she's been with me every step of the way for five years. I've had nine different powerful rugs, chemotherapy, immunotherapy, targeted therapy, I had a stem cell transplant, radiation. And even despite all of that, because it's been so personalized and she has so expert in kind of putting the right combinations together, I've had an incredible quality of life throughout. And I'm in remission. I've been in remission for over four years. And very often you still on treatment, still on treatment every single day, but it's a deep, durable remission that's going to have me well positioned for that day when the next breakthrough or the breakthrough after that leads to my future cure. 

Darrin Godin: That's awesome news, almost brings a tear to my eye. I mean, that's awesome, I love to hear that. Diane, you have such a great smile, and I know that you've probably been the anchor through all of this for your husband and for your family. So talk to us about the importance of a care team or a support team around you. I know it's not easy and there were probably days where you didn't feel like an anchor or you felt like you were at the bottom of the ocean only. So talk to us about that and why it's so important and who should people really bring around them in this sort of a situation? 

Diane Kennedy: Well, having a care team is so important. And it doesn't necessarily mean that it's a spouse and it can be an adult child, it can be a neighbor, a friend that can join you. And hen for that care person, the first few weeks you are just, you're all in, you don't have time to think about yourself. But as things get better and you have a plan, it's important for care members, care partners, that's what I call myself, a care partner with Todd cause we work together on this, but it's important for care partners to put their oxygen mask on first at that point, to worry about their wellbeing and health and mental strength through that. 

And then you worked together and Todd and I went to all the doctor's appointments, the treatment at the beginning was such that he wasn't able to drive home so I would be there with him all day and then drive home together. It was important for us too with having, our youngest son was still home, we had a dog at home. So when he was at school, we had friends and neighbors that would help with either walking the dog for us or helping out with them, but just making sure our 17 year old at the time was not just home sitting by himself that he could have a family to go out to dinner with if we weren't back in time to go out to dinner or- 

Todd Kennedy: You need to ask what you need specifically. We didn't need any casserole on the doorstep and that's very valuable for some people, but that wasn't us. We needed somebody to walk the dog when we're up in Duarte for 10 hours, something like that. So that team of, I needed a care partner and she's been a partner in every sense of the word. And then that other support network of family, friends, and community and other patients too has been, have been really, really valuable. You get so much help in that support network from people that have already walked in your shoes and layer that on top of just an expert care team. And that's a pretty good team to help you through this marathon. 

Darrin Godin: And Diane, I've heard you say in other settings that City of Hope didn't just care for Todd but they cared for you and they cared for your family. And I hear that all the time from other people. Tell us from your perspective, what does that really look like and what does that mean? 

Diane Kennedy: Gosh, and it's just the little things. When Todd gets his treatment at City of Hope, Orange County and we walk in and the two women that are at the front desk there to sign in, they greet both of us. And he went to a meeting the other day and I wasn't there. And the first thing they said- 

Todd Kennedy: They said, "Where's your wife?" I'm going solo today but they missed her. 

Diane Kennedy: They treat both of us like we're valuable members of the care team that is helping get Todd healthy. And doctors and everyone there is, "Can we get you water? How are you doing?" I literally started crying once when it was so all about Todd and someone, "How are you doing?" It's like, "Oh me?" No one's- 

Todd Kennedy: No one's ever asked me that before until I got here. 

Diane Kennedy: Until I got there. And yeah, it's just amazing the care, and you really do feel that you're part of the City of Hope family. You're not just a number or I'm not just the spouse. I'm a valuable member of the team that's on making Todd healthy. 

Darrin Godin: And we're so glad you feel that way. And like I said, I hear that from other families as well. And we teach that in our OC orientation and I think the broader City of Hope as well, just about how important it is to care for the patient and whoever's there with the patient and around the patient at any given time. You talk about Kim, Todd, remembering the words that came out of her mouth. That's something that I've heard you say before in other areas as well and I share that as we do our OC orientation that it's so important the words that you say. You may not know what to say but what you do say should be positive and encouraging because those are the things that people can hold onto. So very exciting that you've shared that and experiencing that. 

So when City of Hope's Irvine Cancer Center opened last year, you were both part of the opening day, the group of grateful patients who celebrated with the ride and the balloon with the big letters that said HOPE on one side Rise Above Cancer on the other. And I remember seeing both of your smiles that day. Take me back to that day. What did that really represent to you, the opening of City of Hope here in Irvine, and why was it so important for you and for our community? 

Todd Kennedy: Well, when I was diagnosed, like I said, just right after Christmas in 2017 and then started my trips to Duarte in 2018, when we first heard I had cancer and the people said, "Go to City of Hope." We said, City of Who? Where is this city? I haven't heard of it." And then somebody said, "You know what, it's in Duarte." And we're like, from Southern California. I'm like, "I don't know where Duarte is either." But now we know where Duarte is and all the different routes you can take to get there from Orange County. And none of them are easy and none of them are quick, it takes forever. And in those first two years, we made over 100 trips, round trips to Duarte. And I would be driving there generally at sunrise, and then at sunset she would be driving home because I'd be too wiped out from my treatment. And not everybody has that ability, just the access, they don't have that. 

So on that opening day, it really kind of hit us both that for people like us in our community, it means that they won't have to make that drive. And so it just means that the access is there that wasn't necessarily there for everybody. 

And the other part that I thought was really just so powerful about that day was just the balloon, the symbolism of the balloon itself to me was kind of like this proclamation that City of Hope is now here and we want everybody to be aware of it, look up in the sky, and you can see that now Hope is here in Orange County and that we can rise above cancer was the other thing that it said. And I think just the awareness that City of Hope is here is going to be so powerful. 

And people will know the name and they'll know the importance of what City of Hope really represents the importance of an NCI designated Comprehensive Cancer Center, and how it's so much more than the beautiful building that is there. It's about the brilliant minds and the coordinated care, the compassion, the training that says we can help the people that genuinely care and have that cutting edge expertise. So I think now when somebody hears those horrible words, you have cancer, we did. They'll know all City of Hope. And I think that's just, that just changes everything for generations of people here in our community. And that just makes us so happy to be a part of and to just know that it's going to have that impact. And that's what that day was all about, was just kind of announcing it to the world and to our community that City of Hope is here. 

Diane Kennedy: Both of our sons were in town for that and we got to ride up in the balloon with both of them and they'd been with us for, sorry, now I'm going to get emotional, at that point, it was four and a half years, now it's over five years with us every step of the way. So that was pretty special. 

Todd Kennedy: That's special too because I can take whatever you throw at me, but the thing that's so nice is having City of Hope here for our kids and for other people's kids and for the generations to come, and not just if you get diagnosed, but the things that you guys are doing as far as prevention and early detection. So somebody doesn't have to go through what I've been through. 

Diane Kennedy: The best way to beat cancer is not to get in the first place. And having City of Hope here is going to make a difference in that way. 

Darrin Godin: I believe it. You're both tireless advocates and you're raising awareness for multiple myeloma, but really you're raising awareness for hope. It oozes out of you both. And I'm always inspired by your story and how you share about it, how you're so real about it. I think our listeners today are able to see that as well. And that idea of oozing hope is something people need. So let me ask you this question that we ask all of our podcast participants, and I want to hear from both of you. So let's start with Diane. Diane, what does hope mean to you? 

Diane Kennedy: Oh, we talk about this quite a bit. Hope is just the promise of future, and we're big advocates for having hope, but we don't believe in just blind baseless hope, we believe in hope and action. I'm sorry, I know I'm stealing what you would say, but this of our joint message always, hope is so important but having action with your hope is doing something that is what makes the hope real. 

Darrin Godin: Todd? 

Todd Kennedy: Well, I think, and this case, I think it's justifiable hope. We have hope and we have faith and that it is a foundation. But in the case of City of Hope, our hope is based on knowing that if you have my disease, you can go into clinical trials.gov and you can see where is the research being done around the country for myeloma. And there are very few places, very few places that are doing more clinical trials on myeloma than City of Hope. And it's breakthrough potential cures in Bispecifics or CAR-T or other immunotherapies or just understanding what's that right combination to get the right drugs to the right people at the right time. And so understanding the science gives me justifiable, it's based on that. And like Diane said is that's what fuels me to take the action to be so closely connected with the science and be so closely with City of Hope and other researchers actually around the country to try and turn that hope into reality. 

Darrin Godin: Justifiable hope and action, that's great. So let's come to an end on this. What is your shout it from the rooftop message today to our listeners? 

Todd Kennedy: Well, I would say take that same hope and let that inspire you to do a few things. And the first thing is to get educated and then use that education to get empowered. Because really as a patient, you need to be your own best advocate. Even though I've got great advocates in the entire team at City of Hope, ultimately, it's the patient's responsibility along with their care partner to really be your own best advocate. And then use that education and empowerment to get connected. 

The number one connection, my take home message is the number one connection is you have to get an expert on your team that has absolute deep, deep expertise in your specific cancer. Somebody that is not only directly involved in the research ideally, but at least is seeing patients like you on a daily basis. Because it's through that understanding of the evolving science, which is happening very, very quickly, and seeing individual patients that they can kind of do that science and art thing, blending the two to come up with that exact right plan that's going to give you the best quality of life. So let the hope inspire action and the parts of that or the education empowerment and connection and your first most important connection is a true expert in your specific cancer. 

Darrin Godin: Thank you. Todd, anything to add, Diane? 

Diane Kennedy: No, I think he nailed it. What we say always starting right is so important. Your first odds and best chances of beating cancer is to start right the first time. And so that's where getting to an NCCN Cancer Center is so important. 

Darrin Godin: Great. Thank you so much. Todd and Diane Kennedy, thank you for talking hope with us today and for sharing your story and your insights. I am inspired and moved by your resilience and your commitment to help others. And you guys have just been incredible people and we thank you for your advocacy for City of Hope as well and it's been a pleasure to have you on our podcast today. And thank you all for joining us for the podcast. Until next time, I'm Darrin Godin and this is Talking Hope. 

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