There are many reasons why someone donates their time or treasure to Susan G. Komen. For national Board Member Jerri Johnson, nearly two decades of living with metastatic breast cancer has provided an appreciation for the research that is keeping her alive and the importance of giving back. She began her volunteer efforts with Komen in 2003 with the Los Angeles County Affiliate.
Johnson, who is living with stage 4 inflammatory breast cancer, brings her personal experience with the disease, as well as experience gained from over 25 years helping start-ups, turnarounds and improvements of organizations in national and international settings to Komen’s national Board of Directors. She is currently the Executive Director of Business Technology with The Walt Disney Company. She recently visited with Susan G. Komen and discussed why she is so passionate about supporting Komen and what she’s excited about for the future.
Komen: I understand that you are living with metastatic breast cancer. Can you tell us a little bit about how breast cancer has touched your life and how you were introduced to Komen?
Johnson: I am a 19-year breast cancer survivor, and am currently living with metastatic breast cancer, and have had it for 19 years as well. I was 35 when I was originally diagnosed, which is not something most 35 year old’s think about. Newly married, future was bright and, and all of a sudden, this breast cancer diagnosis came in. And it obviously changed plans, a lot of plans, along the way. But there are good parts and outcomes of that as well and wonderful support from family and friends. Health care providers that really were willing to try interesting, cutting-edge things to help save my life.
One of those cutting-edge things was actually trying a chemotherapy cocktail that had just come out of initial clinical trials. And my oncologist said, “Hey, we’re going to try this.” It stopped the progression of my cancer. So, we were able to go in and address the different metastasis, and we’re able to get into a position where my cancer could be managed. It has been manageable for the last 19 years.
So, after that experience, I asked my oncologist: What was the turning point? And she said it really was this research out of MD Anderson that was actually funded by Komen. And I didn’t know anything about Susan G. Komen. We’re not really a cancer family. We’ve got a history of heart disease, but not heavily in the cancer space. I didn’t know what an oncologist was until my surgeon told me that I needed an oncologist. So, it was really from ground zero that we learned about this space. I am truly grateful to Komen for helping to save my life. And, while living with metastatic disease has not been an easy situation, it is something that has gotten much easier over the years.
I will be forever indebted to Komen for their initial assistance and their continued assistance in this space. It’s not just a physical disease either, there is a huge psychological toll on yourself as a patient, but also on your family and friends. So, any sort of chronic illness, comes with a huge level of anxiety and stress. And how you manage that is a big part of how you survive and what the quality of life is as, as you survive that. I think that’s been a really important part of the last 19 years.
Komen: You mentioned the mental and emotional toll that this disease takes and the support you’ve received. How do you manage that and what support services are available?
Johnson: A great question. There are a couple of ways, both with Komen reaching out to me, but also me reaching into Komen. I became very involved with the organization. Being able to share my experience with others is very therapeutic. Being able to be put into contact with doctors that weren’t just focused on the physical side of it, but therapists that had crazy techniques like laughing therapy. Which sounds completely ridiculous, but really has a place in survivorship and how to make survivorship a fun experience. And being able to take and lift off your shoulders some of that stress for periods of time.
I never would have thought of using those types of assistance resources. But through Komen, I was able to get connected with people who really helped manage that stress and anxiety. It made a huge difference. And now when I talk to people who are diagnosed with breast cancer, it’s one of the first things I say is, “Don’t wait to address the psychological side of it.” I waited about a year into my treatment before I aggressively sought help with the mental and stress and anxiety, and depression side of this disease. And that’s a shame, because there are some tremendous resources out there, and Komen is a huge resource for finding those types of people who really can make your life better.
Komen: How do you deal with, what people living with the disease call “scanxiety”?
Johnson: Yeah, that’s a scary proposition. And it happens in two flavors, right? If you’re recently diagnosed and you’ve gone through your treatment, and then all of a sudden, they say, “Oh, we’ll see you in three months or six months.” You’re like, “Wait, wait a minute, I’m not ready to not go to a doctor every week to be on top of this.” And then, you get even further out and, “Oh, well, now it’s every quarter.” For me, it’s every six months. You go through that, that same level of anxiety, you get a scan, you have to wait for a couple of weeks for that.
There are some great techniques for that, a lot of them are around mindfulness and meditation and some of those types of things. Which sound very abstract and sometimes a theory, but I have to admit, I was not a huge believer, but being able to control your mind really helps with that level of anxiety. Komen was one of the first groups, and one of the only groups I knew that really got proficient in finding resources in kind of the mindfulness area that has really helped breast cancer patients. It’s been a huge way to assist with that scanxiety.
Komen: When living with metastatic breast cancer, you are always looking for what’s going to be that next treatment. How important is the research Komen does to people like you?
Johnson: I think it’s critically important. And one of the great parts about Komen is not just that local level assistance with things like diagnostics and care, but also that cutting-edge research and resources. I think what’s been really interesting to me in the last several years, has been the focus on technology. As a technology executive in my day job, this notion of patient-centric data and being able to leverage that for things like clinical trials and matching patients with trials, to me, that’s very exciting. Because I know, at some point there will be cures for even challenging breast cancers like metastatic breast cancer.
Komen: After years of volunteering and raising money at the local level, you became a member of our national Board. What has that experience been like?
Johnson: It’s been fantastic. I think that what I saw in Komen from a national perspective, getting more involved in technology and operations and better using our data, gathering and using our data more effectively… to me, it was very exciting. I don’t know of other not-for-profits that are really taking that initiative and that kind of charge in that space. And so that, for me, was a very motivational force. I was super excited as well to understand the strategy and be a part of helping to set that strategy.
I also think metastatic breast cancer hasn’t always been a conversation that we’ve had at Komen or anywhere, quite frankly. It’s been only in the last 10 to 20 years that there’s really been conversation around this. And so, I’ve also enjoyed being able to bring that to the table. What is the experience of our chronically ill breast cancer patients? Because it’s a little bit different. It is a different experience than those that are one and done, where they go through a diagnosis and a treatment and then it doesn’t recur, and it doesn’t metastasize into something more serious. Those are different patient experiences, and there are also different patient needs, right?
When we talk about research and getting attached to clinical trials for the chronically ill or the critically ill, that is very important. And then that research comes back, and that helps us understand how something metastasizes, so we can be more proactive with patients that are diagnosed the first time. And we can say, “Hey, your propensity to get this is this.” And, by the way, we can be proactive and treated in this kind of regard. So, to me, that’s exciting. What Komen is doing in those spaces is really unprecedented and I’m excited to be a part of it.
Komen: What is the importance of Komen’s role as a patient’s trusted health care guide?
Johnson: I think that’s something that makes us very unique in this sort of health care space. And this notion that we can really assist navigation of patients through their experience. Komen’s Breast Cancer Helpline is an amazing resource. So, no matter where you live, you can reach out to trusted experts that may not even be in your local area for guidance, for assistance. I think that’s a tremendous benefit to anyone. It really reduces that disparity around where you live determining your outcome.
The other piece of what Komen is doing is the assistance in the financial aspect. Breast cancer can be a very expensive disease. Komen is helping with some of that financial assistance. We’re reducing the gap between what someone can afford to do with what they need to have done in order to survive and make their life and quality of life the best it can possibly be. So those are things I’m very excited about. And those are things, from a Komen perspective, we don’t talk about them a lot. But I tell you, when you’re going through it, it’s top of mind. This can be an exceedingly expensive endeavor, and even if you’re insured or not insured, again, I still consider myself really lucky. I had insurance, it still cost a lot of money to get through this. And what Komen is doing to assist other patients and families with that is tremendous. I’ve heard too many stories of other cancer patients that have lost their homes, or been financially bankrupted, and that’s a terrible choice to have to make. And that stress on top of trying to battle a disease like breast cancer.
Komen: Resources are tight with everybody’s budgets. What would you say to a donor of why supporting Susan G. Komen is so important, particularly, during this time?
Johnson: Great question, and it is one I have been asked as well. Breast cancer hasn’t slowed down. Just because COVID-19 has jumped to the top of our health care mind space, does not mean that breast cancer isn’t still there. There are still going to be one in eight women, and more than 42,000 people a year that die of breast cancer. And that’s not going to change because of COVID-19.
Taking our eye off the ball and not funding what we need to do in order to support patients, their families, communities, when they’re losing jobs and losing health care and losing some of those safety nets. Should they get a diagnosis of breast cancer, this becomes even more imperative that we don’t stop what we’re doing, both at the local level as well as what we’re doing from a research perspective. We don’t want to pause any of the progress that we’ve made, because that takes years to recover from. And so my plea is that, not just for me, but for the people in the next minute, hour, day, week, that are diagnosed with breast cancer, that we support them in their journey, just as we supported women like myself who were diagnosed 20 years ago.
