Being Your Own Advocate

Kimberly Irvine was used to taking care of the people she loved.  Conquering breast cancer – twice – forced the young mom to learn how to take care of herself in a whole new way. In a conversation with fellow philanthropist Riccardo Braglia, Kimberly shares how cancer changed her family and offers advice for patients who meet cancer in the prime of their lives.

TRANSCRIPT

PRESENTER 1: Life doesn't stop for months and dads when they hear those dreaded words, "You have cancer." But how do you take care of your family while searching for your own care team, scheduling doctor appointments, and dealing with the side effects of treatment? Kimberly Irvine has some tried and true advice. She was a young mother of two when she conquered breast cancer twice. In this episode of Your Stories, Kimberly talks to her friend and fellow research advocate, Riccardo Braglia, about why it's OK, even necessary, for patients to put themselves first during treatment and offers tips on answering the tough questions children have about cancer.

RICCARDO BRAGLIA: Kimberly, tell me about your story.

KIMBERLY IRVINE: I was initially diagnosed when I was 31 years old. I remember hearing those words, "You have breast cancer," and the first thought was, I knew I was going to have to have to go through surgery. And there's many different options. You can choose to reconstruct, or you can choose not to. And in my situation, it was kind of a wait-and-see approach. I had to reach out and navigate with the physicians, the health care team. I had no idea who those members of my health care team were going to be. I learned very quickly that I was the CEO of that health care team. Of course, they can give recommendations to me, but I was the person that was going to ultimately make those decisions.

I went through surgeries, radiation, chemotherapy, and about three and a half years later the disease came back when I was 35 years old. I then endured more surgeries, chemotherapy, and hormonal therapy. And today I'm happy to say that I'm 42 years old, and I am healthy and very blessed.

RICCARDO BRAGLIA: This journey through cancer-- there is also another issue that patients, and the caregiver, and the family member have to face which is not just relating to the choice of what treatment. But there are many other things to tell your kids. That was a big challenge.

KIMBERLY IRVINE: When I was first diagnosed, my daughter was six, and my son was four. At that age, if they see you lose your hair they think, Mommy's sick. The second diagnosis-- I was 35. They were 10 and eight. Well, life was very different because they started to understand the difference between life and death. I had questions like, hey, am I going to catch this? Did I do something wrong? Is that why Mommy got cancer?

Those are things that I just didn't really know how to answer. I had to educate myself. Now here we are. I'm 42. My daughter is 17. My son is 15, and we're in a completely different paradigm in terms of now their concerns are, gosh, is it going to recur for you? And then the biggest concern is, am I going to get cancer?

I had two situations recently with each of my children. My daughter one day had come into a room, and she was crying. And she said, oh my gosh, mom. I feel this lump in my breast, and I think I have cancer. And I just kind of sit there for a minute. Then I thought to myself, you're 17 years old. How do you even have to think, the first thing is I have cancer?

And we had a doctor check her out, and she was fine, but it just really allowed me to understand that perspective of that fear just doesn't leave them. And then yesterday I was sitting at dinner, and I got a text from my son. And it was the same kind of thing. It was, Mom, I have this bump on my head, and I think I have cancer. So that really does affect our family, and I'm 10 years out from my first diagnosis. And that fear, and that anxiety, and that uncertainty never goes away.

RICCARDO BRAGLIA: The survival patients can be a great example but also a great tutor on what is the journey.

KIMBERLY IRVINE: You really have to be your own best advocate. People don't take the proactive approach of wanting to take care of themselves. That's probably one of the biggest lessons that my kids have had to learn at a young age, that they really have to take care of themselves, and there are things that they can do in terms of lowering their risk.

None of us know if it's going to happen to us, but we can certainly take some control back to what cancer tends to take away from all of us. I tell patients that the way that you can allow yourself to heal is to take that story and really apply it in a way that's positive and funding cancer research.

RICCARDO BRAGLIA: Part of my life is to be involved in research. The result of research is there. Cancer, which was really devastating to all people 20 years ago-- today there are a lot of cancer that are treatable, like yours, and people are surviving. So in the future I see that cancer is becoming more a chronic disease than an acute disease.

KIMBERLY IRVINE: The other piece for me was really about having some of those tougher conversations with children, how to have those conversations in terms of, Mommy, are you going to die? How do you answer a six or a four-year-old child not knowing what the right answer was? The question I get quite often is, how did you parent through cancer? And I'm still facing that.

There's hope. When you have kids, and you're going through a diagnosis, and maybe they're very young, and you're overwhelmed, I want you to have hope because now my kids are 17 and 15, as I said. And my daughter wants a work in health care and really make a difference, and I think that's when it really hit me. It was unfortunate that these kids have had to endure a cancer diagnosis, not once, but twice. But they've learned resilience, and they've learned how to overcome adversity in a really powerful way. And I think that's what's made them who they are.

Everyone asks me, how do you work in oncology? Is it challenging? And I often tell people, oh gosh, it's absolutely challenging. There are some days I go home and bawl my eyes out. I've met so many amazing friends and continue to make friends, and they are literally fighting every single day of their life. I've lost a lot of them.

For me, personally, that survivor's guilt is immense, and I just come back to the reality of, I'm here for a purpose. If I can use my story and I can help educate others, then I can inspire them and help them realize that cancer doesn't have to define you unless you want it to. You can take it.

RICCARDO BRAGLIA: But you should learn from that?

KIMBERLY IRVINE: Absolutely, and I've learned a lot of lessons. I tell my children every day I didn't want the adversity to really break us. I wanted to use it for purpose. My hope is that our stories will, whether you're a patient, a care partner, or somebody within that support community, that you're able to identify how you're going to handle that adversity. And whether that's just pushing yourself to get through one more chemotherapy treatment, or considering a clinical trial, or allowing yourself to talk about your story to somebody else because it will give them hope, and strength, and courage, and the grace to get through it and maybe beyond that ignite a movement to really make a much more impactful difference, leaving a legacy-- I think that's powerful.

PRESENTER 1: Like Riccardo Braglia, Kimberly is using her cancer story to inspire others and invest in cancer research. You can learn more about the latest cancer research at conquer.org. if you need resources on how to navigate cancer, visit cancer.net, which offers physician-approved advice on every type of cancer. It's funded through the generosity of Conquer Cancer donors.

Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, Conquering Cancer.

PRESENTER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.