Living with Metastatic Breast Cancer with Jerri Johnson

This week on Real Pink we are hosting daily conversations about breast cancer that hides in the shadows: metastatic breast cancer (MBC).

In the US alone, MBC is expected to kill 42,000 people. This special episode, featuring Kelly Shanahan, is part of National Breast Cancer Awareness Month.

About Jerri

Jerri is an operations executive at the Walt Disney Company with more than 20 years of experience orchestrating the start-up, turnaround, and improvement of IT organizations in national and international settings.  Builds and leads top-performing teams focused on exceeding organizational goals. Introduces strategic plans, new technology, resource models and processes to increase performance and reduce costs.


Adam: [00:01] Today it’s estimated that at least one hundred and fifty-four thousand people in the US have stage four or metastatic breast cancer. Although metastatic breast cancer currently cannot be cured, it can still be treated. If you have been diagnosed with metastatic breast cancer there are many ways to stay active in the breast cancer community, getting involved can be personally rewarding and can impact the lives of others. Today I have the pleasure and honor of talking with Jerri Johnson. Jerry, welcome to the show. 

Jerri: [00:28] Thanks so much, Adam. Glad to be here. 

Adam: [00:30] I’m excited to chat with you. I love your perspective, love your enthusiasm so just tell us a little bit more about yourself let us get to know you. 

Jerri: [00:37] Great, no thanks, so I’ll start with the front of my business card. I work for the Walt Disney Company and I’m responsible for the enterprise-wide systems that relate to our HR functions. So hiring, managing talent and performance and career pathing and so forth so it’s an exciting space with a very large and diverse company. So that’s exciting. I was led here through years of consulting and industry type positions so this is really my dream job. I’ve been a Disney nut since I was a little kid so it really is my dream adventure. So get to the front of my business card. 

Adam: [01:11] Okay.

Jerri: [01:11] On the back of my business card I am an eighteen-year survivor of stage four breast cancer and a metastatic [riper? 01:19]. So that started in 2001 I was diagnosed with stage four cancer. I was pregnant at the time. I was actually four months pregnant when I was diagnosed. 

Adam: [01:30] Wow. 

Jerri: [01:30] That’s a scary twist to the life-changing events of trying to have a child. So we went to the doctor and they said statistics are very individual and we don’t look at things like survival rates or mortality each cancer journey is individual and unique. I didn’t really understand that at the time, but as I’ve gone forward over the last eighteen years, I realized that it very much is an individual experience. 

[01:57] So after that first diagnosis there was just this white noise of chaos that happens, jargon and terminology that you don’t know and understand. I’m not in the medical community. The great doctors who were patient in explaining things and we chartered forth and there was no time to lose. The cancer was actually spreading about every forty-five days. Very aggressive and based on that we went through twenty-six months of treatment, active treatment, chemotherapy based, a few sets of chemotherapy, radiation and surgeries, several surgeries. 

Adam: [02:40] Wow. 

Jerri: [02:41] Yeah, so twenty six months later walked out on the other side of that and said, “Oh, I’m totally done.” And by the way, we did lose the baby along the way. Loss is something I think we’ll talk about in a few minutes. It’s a part of this experience and the psychological effects of that are challenging and the emotional side of that is really challenging. So after we’re sort of at the better stage of things I asked my oncologist what was it that sort of helped us define this very individual path to get where I needed to be. What is it about this journey that made a difference? And she said, “Hey, there was some initial research out of the Komens, Susan G Komen, the breast cancer foundation had funded, she said, they were pairing high dose chemotherapy cocktails for different types of cancer together to try and treat really aggressive breast cancer.” So kind of a combination of lung cancer and breast cancer chemotherapy and that’s what kind of stopped everything long enough for them to be able to go in and work all the individual areas that the cancer had spread to. So I thought, “Hmm, well that’s interesting.” Then I thought, well, I need to research this Komen group. This sounds really interesting and that’s actually how I got involved with Komen, so they were a big part of my initial survival story. 

Adam: [03:57] Wow, that is an amazing story. So let me just make sure I got a few of those details correct, so you said that number one, you’ve been living with stage four metastatic breast cancer for eighteen years. Your one prognosis was 5% survival rate. What would you like others to know about metastatic breast cancer? 

Jerri: [04:20] So I think there are a couple of key things about metastatic breast cancer. It is the chronic version, I like to say it’s the chronic version of breast cancer so it stays with you. You’re always sick, but you’re not always in treatment and I think of it in terms of kind of other chronic diseases like a diabetes or something like that where you’re not always daily fighting, although it does flare up, so it’s one of these diseases where, hey, you find an issue when you’re hey, you need to go address that. You need to go have surgery, you need to go have some sort of chemical cocktail or something to address that sort of flare up and then for me at least, it has flared down. You kind of go into remission for a while so it’s this kind of roller coaster effect and we talk about this physical aspect a lot. 

[05:03] We don’t often talk about the psychological effects of this sort of roller coaster or physical experience and to me has been as hard and quite frankly at times harder than managing the physical side. The anxiety of am I sick, am I not sick? Is the treatment working? Is it not working? Being tired of being sick and being tired of being thought of as chronically ill. It brings you down and there is a level of psychological and emotional challenges to this disease that have to be managed as well as the pure physical. 

Adam: [05:39] Wow, that’s really insightful and I really appreciate you sharing the psychological toll of that. And I think also if I can just pull on a thread of something you said a moment ago too, I think there’s something you said that I thought was interesting, you said each cancer journey is an individual journey, and I think what you were alluding to is that stats are scary, but that every scenario is unique and different. Is that what you had in mind when you said that? 

Jerri: [06:04] Absolutely. Things that work for one person may not work for someone else. How our body responds to treatments, how our body responds to the type of illness that you have is very different and I think that’s one of the things that’s very exciting in the breast cancer research space right now, is really targeted patients specific therapies. 

Adam: [06:23] Yeah, I totally agree. So let’s dig in just for a moment into how you’ve coped with the diagnosis. You talked about the physical toll, the psychological toll, like what do you do to sort of manage that? 

Jerri: [06:35] That’s a great question. First and foremost get a medical team that you have confidence in. It does not help your physical or psychological well-being to be in a relationship with your medical staff that you don’t have competence or you don’t feel like they’re supporting you. You still need to advocate for yourself, but you can’t carry the whole burden of managing every aspect physically and psychologically. I was an information sponge. I wanted to know everything and it was funny my oncologist was kind of my quarterback of the medical team and I was sitting in her office one day and we went through all the normal tests and she said, “Okay, I’m going to sit down and you break out your questions.” I had a notebook for every doctor of all the questions because they always ask, “Hey, do you have any questions?” And when you’re sitting there on the spot I couldn’t remember any.

Adam: [07:28] Yeah, right.

Jerri: [07:28] So I carried around this notebook and a section for each doctor. It was just cute at the end of every visit they’d say, “Okay, now what are your questions?” And that to me was really important because I wanted to learn about it and they were really great about my need for knowledge and the level of comfort that that gave me. 

Adam: [07:44] I love that. I love that and so speaking of the medical community that you surrounded yourself with, what has been the most helpful to you in creating that community of support that you need in order to continue to move forward? 

Jerri: [07:59] I think the important part in your medical community is to be sure that you’ve got one person that sort of quarterbacking all of the different things that need to be done. The challenge with a disease like metastatic breast cancer is that it pops up in various different things, right? So I had a radiation oncologist, I had a dermatologist that managed the skin, there’s all these people and specialists that get involved. It’s really hard to make that a cohesive plan and so it’s really important you find someone, whether it’s your oncologist, your surgeon, your primary care physician. Someone who can really help you quarterback all the different pieces that are going on and be sure that those are put together in a comprehensive medical plan because it doesn’t make any sense to have one person go do something that’s not within the fold of what needs to be done across all the specialties. And I think specialized medicine is fantastic, but it has to interrelate to your total medical plan.

Adam: [08:54] That’s right, I love that and so you mentioned earlier about getting involved with Susan G Komen and some of the research that they helped you with, can you talk just a little bit about how getting involved with Susan G Komen has helped you through your journey with breast cancer? 

Jerri: [09:09] Sure, absolutely and I’ll even rewind a little bit to say family and friends are an absolutely imperative part of any survivor’s journey regardless of whether you’re metastatic or you’re a stage zero, a stage one diagnosed patient. Cancer is a scary thing. Family and friends that can support you, but not drag you down or become overly concerned. People who you can just go to lunch with and not talk about cancer for an hour or two are really an important aspect of it, but then also people who can go with you through the hard times and so this is where my family really became a big part of getting involved with Komen. So when I got through the first twenty-six months of treatment, my husband and I, and by the way, we’d only been married eighteen months when I was diagnosed. 

Adam: [09:53] Wow. 

Jerri: [09:54] We said, “Hey, this is fantastic. Komen has done so much for us. We are compelled to pay something back.” Someone strapped on some shoes, walked, raised some money for us before I even knew I needed that and so we wanted to find a way to give back. And so our first engagement with Komen was breast cancer three day program, which is a sixty-mile event over three days so it is an endurance event, and yes coming out of twenty-six months of treatment, that training goal was a really important part of recovery for me as well to say I could really do something that courageous. My husband walked right beside me every mile of the way and this year we will actually be doing our seventeenth three-day walk, so this is our family committed. 

Adam: [10:38] Yeah, I love that.

Jerri: [10:41] [inaudible 10:41] on and we go all out. It is one of the most inspiring three days of our year every year and my whole family is involved and it’s really a wonderful way to celebrate and support. So that’s one of our first involvement with Komen. I said, “Oh hey I can do something more than three days a year and I said how can I volunteer?” I just started off as an office volunteer and got involved with [inaudible 11:02] for the cure and eventually joined the local board of [inaudible 11:07] here in Los Angeles and just recently joined the national board. What I do for a living in terms of business and technology operations executive dovetails really well into what Komen needs. Komen needs strong volunteers that can make a difference and this is an organization that is making a difference both on the ground at our local level.

[11:28] I see the impact every day with folks in the LA area who are impacted who mainly need navigation assistance through their breast cancer journey and those of us who come on the other side as well but are still challenged by the experience. You see folks with after-effects of this disease for a long time. Things like PTSD from the trauma and the stress and the anxiety of having to go in every year for annual tests and being able to help on a local level is so important. So I think that local structure that Komen provides is really fantastic and then, in addition, they have this national structure that helps support the really large scale breast cancer research initiatives, which obviously some of that saved my life. 

Adam: [12:12] I love that and I love that you’re pushing through this. You didn’t sit on the sidelines, you’re getting involved, you’re making an impact not just for yourself but for thousands and thousands of other people globally, and that’s really admirable. I appreciate the effort that you’re putting into that. So you talked a little bit about support and kind of the support that Komen gives and all that sort of stuff. I wonder if we can just hone in on that for a moment. What are the sources of support for people that are living with breast cancer right now? 

Jerri: [12:41] That’s a great question and a great way to contact Komen is through our websites so please feel free to reach out through that. If you’re in an area that has a Komen affiliate, you can also look that up and Google your Komen affiliates in whatever town or city you’re in, it’ll get you the closest one to you and reach out. There are resources, there are local people in these affiliates day in, day out doing amazing work connecting people with the right medical staff. Connecting people with caregivers, support groups, financial assist groups that will help with financial assistance, diagnostic assistance. “Hey, I think I might have something. I don’t know where to go. I don’t have insurance or I’m underinsured.” These are ways that Komen helps locally so get engaged with Komen, just reach out, pick up the phone and call someone or send us a chat. 

Adam: [13:29] I love that. I love that you’re a technology person and then you said, send us a chat through the website, that’s just amazing, right. So Jerry, last question for you, what piece of advice do you have for people living with metastatic breast cancer? 

Jerri: [13:42] I think the best piece of advice would be not to put your life on hold. Don’t wait, hold back things that aren’t progressing you in living your life. Hold back the anger, hold back the stress, hold back the [inaudible 13:59] Don’t let that become a black cloud over your life whether you’ve got two days or twenty years who knows? We’re all living with an expiration date on our heads, and not to become obsessed with that, but live your life and it’s not always that you have to go do something huge. Live your life every day. Enjoy things, enjoy your family, enjoy your friends, enjoy what you do for work and if it doesn’t please you and doesn’t meet your needs, then don’t do it anymore. Don’t carry the anger around with you. If it’s not helping you, let it go and live your life and make plans and enjoy where you’re at. 

Adam: [14:36] I love that, that’s such great advice. Jerry, this is genuinely an inspiring conversation. I love your perspective, I love your enthusiasm. I love your take on life. I really appreciate you taking the time to share that with us today.

Jerri: [14:52] Oh thank you, Adam. It was a pleasure. This was fun conversation.

Susan G. Komen launches the MBC Fund!

Susan G. Komen is proud to launch the “MBC Fund” specifically designed to spur scientific discoveries and support those women and men living with Metastatic Breast Cancer, building on Komen’s $210 million investment in metastatic breast cancer research. For more information on the MBC Fund and how to support it, visit

Into Thy Heart by Ivan Chew. Ad music is Blue Skies by Silent Partner.  The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec and owned by Susan G. Komen.