Standing in the Gap

[00:00:00] Adam Walker: This podcast is brought to you by Exact Sciences, with a leading portfolio of products for earlier detection and treatment guidance. Exact Sciences helps people face the most challenging decisions with confidence.

From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

Thoughtful gestures – big and small –  mean so much to survivors, whether they’ve just been diagnosed or completed treatment many years ago.  Today’s guest, Janice Workcuff, has devoted her life and career to advocating for needs of her fellow sisters through making phone calls, joining them at their appointments and spreading the word for improved healthcare and more clinical trials.

It is her mission to raise awareness for breast cancer through speaking engagement, educational resources, counseling and hospice guidance.  She stands on the premise that helping others is her purpose, her assignment, her calling – and she is a true leader that is making a difference.  Janice, welcome to the show.

[00:01:10] Janice Workcuff: Hey, thank you. Thank you so much for having

[00:01:13] Adam Walker: me. I love your, I love your whole attitude, uh, but let’s, let’s dive in.

We’re going to hear a lot more about that. I’m excited about it. Um, but let’s start with your breast cancer diagnosis. I want to start there because it seems like it truly changed the trajectory of your life. So, so tell us about.

[00:01:30] Janice Workcuff: Absolutely. Yeah. Uh, I was diagnosed, uh, actually this is January, 2022. So now I’m a 34 year survivor of breast cancer, 34 years.

That is amazing. When I think about that, that’s that shocks me. But, uh, I was wrestling with my son. He was five years old at the time. And, uh, he hit my breast accidentally. And when I hand touched my breasts, I noticed that something was different. Something that I’ve never had noticed before. And so, um, I was right on it.

I went by to the doctor and, uh, again, I was 34, so they didn’t want to do a mammogram, but I insisted that they do a mammogram. And so they did. And, uh, it came. Uh, suspicious. Uh, it says suspicious. Let’s check it at about six months. Again, I wasn’t comfortable with six months. So I asked, could they do a incisional biopsy where they actually cut the breast and, and test it.

And they did. And they came back and there was a deep breast cancer. And so it was a, it was stage one inside too. It was just right there in that area. And it was stage zero to stage more. Um, I was very, very devastated. I didn’t know anybody that had breast cancer. I heard it on TV, on the radio, uh, different people.

So, uh, I was, I was really, I was devastated. I was really shocked. That’s something that you think it can not happen to me. And then I was so young. I was just 32 years age. So. I had the mammogram and then he suggested, um, that I have a surgery. And so if I knew, then what I knew now, uh, I would not have had the modified radical mastectomy where they removed the breast.

I would have had a lumpectomy, but they didn’t have the, uh, you know, they didn’t have the internet and all the Google would all, they kind of stepped in. So I had to go to the library, you know, stuff like that and research it and, and, and rely on, uh, Uh, the medical profession, but, uh, I worked on emotions and so I did have a modified radical mastectomy.

Um, the removal of the breasts I’ve since had a reconstruction, but I would not have had that. I would have known, you know, other options as they have now, but I had that. And, uh, and I did well. I did very well, but three months after the surgery I woke up and something had happened, something was different.

My, uh, my, I had redness in my chest. And, uh, it was something different. So I’m aware, again, being aware of your body is just so important. And I knew that that was different. And so I go back to the doctor and he said that it was a reoccurance into the chest wall. And so, uh, the first time I had surgery and I did fine, I didn’t have to have chemotherapy, radiation and margins were clear, everything was okay.

But the second time, because it had reoccurred, uh, they hit me pretty hard with. With some hard drugs, uh, people call it the red devil, cytoxin, Adriamycin, and . So, um, I was very sick at the time sometime I could walk and sometimes I couldn’t talk. And, um, I’m from Kansas city, Missouri. So, um, I had to call out the truths of the family, my mother, and my mother-in-law had to come down.

I had a five-year-old son at the time to get my husband to take care of the household. Because I was very sick. And so it was very important to have, uh, a support team. We have a very good support team. And so I did have that and I went through the chemotherapy and then after that I had the radiation. Uh, for six weeks and after that, everything was clear.

And so it’s been 34 years now, and my days are into months and my must’ve turned into 34 years. And so I’m excited about that.

[00:05:19] Adam Walker: I’m excited about that. That’s amazing. Yeah. Congratulations on that. And, and so, so I hear you’ve had a motto since then. Can you tell me what that motto is and what it means?

[00:05:31] Janice Workcuff: Yeah, my model is during that time that I did, I was very sick.

Uh, the largest spontaneity and say, this is not going to be unto death. This is going to be for you to help so many people. And so my motto is automation, not reading issue. And so I’m on a mission to be at the side of ladies that are diagnosed with breast cancer, making sure that they’re understanding all the language that the medical team.

Uh, talking to them that they understand that they can stir that they are making a decision in a timely manner to get the care that they need. And so I’m on a mission to make sure that they are getting the best care, uh, as an advocate for breast cancer.

[00:06:15] Adam Walker: Ah, I love that. I love it. And it’s so important.

It’s so important for people to have those advocates alongside. And so, so what are some of the ways that you have advocated for and supported other women through their breast cancer?

[00:06:28] Janice Workcuff: Well, I, uh, again, I go to, if I, if they’re bag though, so they call us, I try to be with them at their doctor’s appointments so that I can understand, and they do on such a, such a great job of it.

Now I worked in a medical family, retired to have a registered cardiac smack for ultrasound, but aren’t. So, uh, I worked in the medical field, so I understand a lot of the language. So I’d go with them and make sure that they understand they’re asking the questions that, that they need. They have done the medical team.

I have to make, I’ve done a really great job in 34 years by explaining it, they kind of give a folder. Now they explain the medications, the side effects. Um, and, uh, all that they need to know they’re answering questions. So cause they’re working on emotions and I didn’t have anybody with me, so I try to make sure, cause the person that’s diagnosed as hear the word cancer and they think in cancer death.

So when you have somebody with you, they can tell you, no, that’s not what they said. You know, they said that they’re going to do blah, blah, blah. So I try to be there for them for that. And then not only for that. Just following up with them as they’re going through. And if they are saying, you know, I’m real, real safe, try to encourage him, call your medical team, call your doctor.

They can help you sell being there for them, praying with them, talking with them and then getting them with, uh, angels, some of the members in the group that maybe have the same diagnosis that there is. If they’re stage four or stage one or stage two or reconstruction, trying to match them up. With the ladies so that they won’t feel like they’re by themselves and they can make it through a, give them hope, try to give them.

[00:07:58] Adam Walker: Well, I would imagine you’re excellent at giving hope. So I’m so glad that they have you there to, to do that for them. So you’re, you’re involved with an organization. So tell, tell us a little bit about that as well, please.

[00:08:11] Janice Workcuff: And cancer, Inc. Uh, this is our 10th last year was our 10th year anniversary and it’s just an awesome, uh, organization.

We have, uh, four different programs. We have a program of education. Uh, and then we have a network where we, again, we meet with the ladies, we have our monthly, well, now we became with the zone call. We were having monthly in person meetings. We have our scholarship program. We have our mental health program.

We have our care program where we help ladies would financial assistance with the rent, uh, utilities, because when they’re diagnosed a lot of times they can’t work and they’ve used all their, uh, all their savings. Yeah. 401k things like that. So we try to help them in whatever way we can. And then we have our new program that started last year.

It’s called halo is healed angels living on, and those are young survivors ages, 20 to 45. And so we started that move so that this young, our young precedent, uh, crystal damage is a part of that. Uh, group. And so she hits that group and I think that’s important the young ladies to be able to, uh, meet even where they are.

Cause a lot of them are podcasts. A lot of people texts, a lot of them are, uh, it’s different from what it used to be. So they rather. Meet them where they are is like they have young children, different things like that. So I’m really excited about that for when I’m taking off, this is an awesome, awesome group, our membership and our board, uh, we meet together and we just love on the women and we just have a different age.

We have an angels touch. That’s what makes us different. We’re kind of one-on-one with, uh, we follow up. With them. And we make sure that we’re on top of whatever it is that they need getting them to the right resources that we can do it, making sure that they know the bad gnosis and they know where they’re going and be able to help them and their families.

We have gone in angels, which is our volunteers. And so we’re excited about this organization. Like I said, this is our tippy year and, uh, we’re doing some great things. And so angel surviving cancer.org is how they can, people can get in touch with.

[00:10:17] Adam Walker: Ah, I love that. It sounds like some great work. I appreciate that.

[00:10:21] Janice Workcuff: Thank you for sharing that.

[00:10:23] Adam Walker: So I understand that you’re involved in numerous organizations. You’re an executive director, you’re a certified patient navigator, uh, among other things I would say that’s kind of the definition of tireless passion. And so my question is where do you find the energy to do all of this?

[00:10:39] Janice Workcuff: Oh, I finally energy, I guess, to the praying and through God.

And, uh, I do a lot of, I do do a lot of self care. I love walking. And so this is some good weather for walking too. This morning. When I took the dogs, I would walk and meditation. And then I do, I do a lot of reading and now they have a lot of webinars to learn.

Uh, different things. And then the ladies, uh, in, in my organization, they give me strength and they give me encouragement. And so I try to make sure that I played self care. We, we do a vacation and then I shut stuff down. So I try to make sure that I’m doing self care and not have so much shock. So that’s really good.

[00:11:20] Adam Walker: Yeah, so important and so easy to lose track of too. So I’m very glad to hear you’re doing that. So, so what I mean, what inspired you to devote your life to this work? And was there someone in particular that was there for you when you were undergoing your own treatments that kind of helped to inspire this?

[00:11:39] Janice Workcuff: I think what inspired me is that, uh, I think I had such a hard time. That, like I say, when I get up from here and I’m going to get up here, I’m going to be able to help so many ladies. And so that inspires me to be at their side and to hear them to actually to see them, uh, from the beginning to where they are back, uh, we productive living and quality of life, not just living, they’re having quality of life and productive living.

They’re not just living. So to be able to see them do that, to see them spot smile, that inspires me a whole lot. And then I do, I had, uh, I had a best friend. Uh, her name is Loretta Wiggins and, uh, she had just had a baby during the time I was diagnosed. So she would come over and she would take care of me and she would fuss at me and make me get up.

And that let me be discouraged by and things like that. And, uh, I am just so sorry to say, and this is so funny. Uh, 24 years out when I was doing for you to diagnose, she was diagnosed, she was diagnosed, but, uh, she, uh, she passed away about three years ago and that really, uh, that is some, some things can just come and just punch you in the stomach.

Benches really passionately because. Such an advocate is such a blessing for me, such a encouragement, and you have to have that type of person. And then she was diagnosed. I was able to be there for her, like she was with me, but, uh, she passed away about three years ago.

[00:13:08] Adam Walker: Yeah. I’m certainly sorry for that loss, but, but thankful that she inspired you.

Um, that’s, that’s good. It’s good to have a friends like that. So. So, you know, as you’re helping people, what are some of the most common day-to-day things that you find that women need help with and how can friends and family members best support them in those areas?

[00:13:30] Janice Workcuff: I think the most common things is, is resources because the aftereffects of, of, uh, the diagnosis is very, uh, tough.

Uh, there’s a male. Um, and so just resources of a clinical psychiatrist actually encouraging them to go to one, um, the neuropathy, sometime the bone aching, some of the, the, uh, the, the side effects of the medication, encouraging them to talk to them. Um, to their medical team, but also, uh, giving them resources sometime maybe you can call for them and then, you know, tell a patient she’s been throwing up for three days.

What can we do? Because they don’t feel like talking a lot of times, uh, sending a card, you know, to them, somebody that don’t know you and you send them a card. That’s so encouraging. Uh, now we can text, they’ll just kind of text and somebody and letting them know whatever we can do to try to encourage them, but mostly, uh, resources, a lot of time, you can give people resources and they don’t follow up, but if you can follow up for them, sometimes that’s really good.

Really.

[00:14:34] Adam Walker: Yeah. Yeah. Just, just people knowing that you’re in their thoughts or that they’re in your thoughts, you know, it’s just so important. Yeah. Yeah. That’s right. Well, you know, Janice, you exude hope and encouragement, and I think you’re just such an amazing example of how we can support people. Do you have any final advice that you’d like to leave with our lives?

[00:14:56] Janice Workcuff: I think for now, while we’re in, uh, like this COVID, uh, this virus stage right now. I think a lot of people may, may still be scared and have fear. I think just talking to your physician to be a hospital staff, they’re trying to make it as safe as they possibly can, uh, for them to get their mammogram. Uh, I know they’re saying you should wait.

I think it’s like two weeks, uh, when you give the. Uh, injection before you get your mammogram, because it shows abnormality, but just find out all that you can from your healthcare team. And if you can’t find out from now, just keep researching and maybe talking to another survivor. Uh, I think getting to another survivor from me, my healing was my family was good and my support from my girlfriend was good, but it wasn’t until I got to another survivor that I didn’t feel so alone.

And I felt. That she had went through what I went through. So then I can discuss different things and, and get to get to what I need to know, uh, in a timely manner. So I think just getting to another survivor, self care and taking, taking care of ourselves,

[00:16:07] Adam Walker: that’s so important. Yeah, self care is so, so important.

Well, Jane is, this has been inspiring. I really appreciate the work that you’re doing for this community. It’s so important. We need more people that are like you, that can advocate and empathize. And we just thank you so much for the support that you’re

[00:16:23] Janice Workcuff: giving. Thank you. Thank you so much for having.

Thank you. I appreciate it.

[00:16:34] Adam Walker: Thank you to Exact Sciences for supporting this Real Pink podcast. For more information about Exact Sciences, please visit their website at exactsciences.com. For more information about genomic testing in breast cancer, please visit www.komen.org.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.