MBC Week – Action and Advocacy

[00:00:00] Adam Walker: In honor of national breast cancer awareness month. If you’d like to join the fight against breast cancer, please go to www.komen.org and donate today.

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. This week on the Real Pink podcast, we’re having real conversations about metastatic breast cancer. We’ll be welcoming people living with metastatic breast cancer to share their stories, their experiences, and their words of encouragement.

Everyone can make a difference in the life of someone living with this disease by urging elected officials in Washington, DC, to pass pending legislation that would directly help this. Today, we’re going to be talking about advocacy and why it’s so important to alleviate patient burden through robust public policies that recognize both the financial toxicity of treating breast cancer and the systemic hurdles patients must pass through to access their.

Here today to share her personal story is Stephanie Walker. Stephanie is a registered nurse with close to 40 years of clinical practice experience with the last 15 years working in hospice and end of life care. When she received her MBC diagnosis in 2015 after health issues caused her to leave her work in 2018, she was faced with stark financial realities that MBC patients often in.

Through it all. Stephanie learned to be her best advocate and is passionate about teaching other men and women with MBC. How to do that to Stephanie. Welcome to the

[00:01:46] Stephanie Walker: show. And thank you. And thanks for having.

[00:01:50] Adam Walker: Um, well, I’m excited to talk about advocacy. It’s so important. So let’s start with your story. Can you tell us a little bit about your initial breast cancer diagnosis and treatment and what was going on in your life at the time?

[00:02:02] Stephanie Walker: My life, um, at that time, uh, 56 years old, um, Empty nest, no children at home, just a husband and a dog and a dog. Um, my, um, abnormality was found on a routine mammogram. Then you go through the treatment of, um, you know, the diagnostic mammogram. Then you go through an ultrasound and then you go through the biopsy.

And I had decided that, um, when I. What’s going to give, be given the results of the biopsy. I didn’t want to come to a doctor’s office. I wanted to stay at home. Call me. I didn’t want to have to pay a copay for you to say, here’s the results of your biopsy. Now we’re going to send you someplace else. They agreed that they could do that.

So, um, my life before that, you know, I’ve worked as a hospice nurse on call. So I would work seven days on seven days off. So my call came on to love the nights after 3:00 PM, um, during my nap time, because I normally rest from 12 before. To take call that night. And, um, the phone rang and they identified themselves and said, I’m sorry, but your biopsy shows that you have breast cancer.

And I said, well, let me tell you, I need to finish my nap. So they have to go on call at five. I’ll call you back tomorrow. And we can discuss what we’re going to do from there. So we hung up, I had rolled over and I went back to sleep. Um, so then when the alarm wall went off, I, um, woke myself up and thought, wow, that was a green until I realized that it was actuality was a fact.

So, um, I told my husband when he came home about the phone call and then the next day we proceeded to hack our plans. The plan was for me to go see a surgeon and to have a lumpectomy. I was getting, you know, information through my chart that I would have to have this exam, this test, this test. So I called the surgeon’s office to inquire about what they were, what these tests were.

And the nurse got really short with me and really downright nasty. Actually. She said, you know, don’t worry about what tests just show up at this time and we’ll do the rest. I do this every day. So please don’t ask a lot of questions. So, wow. Then I said, I just want to know what I’m in for. Well, don’t ask questions, just show up as, how am I showing up?

I’m canceling the surgery. You can tell the surgeon who, as a matter of fact, I’ll call him myself and I’ll tell him why. Because if you in the front office are treating me like this. So I didn’t, so I sat there and then I just shot myself in the foot. Now I don’t know what to do cause I I’ve never gone down this path.

I didn’t know where to go. Didn’t know anybody actually to add breast cancer other than patients. And that’s the last thing you want to do is call a hostile patient, say, Hey, tell me, can you lead me through the course? So I kind of like remembered that, you know, being the director of a hospice organization at one point.

I reached out to a medical director there and he was out of the country. So it was like, well, gosh, you know, but I called this. They had a discussion. They had all the tea, they scheduled me for a whole bunch of tests. Um, they explained to me what they were and we were going to have them all done before he came back in the country.

Then I would see when he came back. So that was like two or three weeks, you know, that I had to wait and, you know, your mind goes there. What’s the cancer doing? You know, is it spreading? Is it getting bigger? Am I going to live three weeks to, you know, see this position to come up with the. But I did. Um, and actually one of the tests that he ordered was a pet scan.

And, um, I say, God works in mysterious ways because God wanted me to fire that other surgeon because my cancer had already spread my hip. Had I had a lumpectomy without any further testing who knows about it, be here today because the cancer was already. So I’m blessed that the course started that way.

So, um, I, um, did you know, Sentinel node biopsy, which showed. It was positive. So, um, we went from there. I had the normal standard treatment of AC and Paxil since I was just working one week on and one week off, I could kind of like schedule the treatments to occur on my, off a week at times. And, um, but I was able to see patients up until then.

Started chemo in September, October was able to see patients up to January. Then after January, I wasn’t allowed to see patients. It was hard seeing patients when you know your patient and, um, it, it puts you in a different spot, you know, to understand what they’re going through. And especially the last patient that I saw, um, there, before I had to quit seeing patients was a metastatic breast cancer.

Um, that was, you know, in her last days. And, um, the last time I got to see her, um, she was in bed, um, really, really weak. And she looked up at me and said, um, my nurse told me why you wear a baseball cap and then said, yeah, I’ll have bad hair days. And she said, no, you’re bald under there. And I know why. And she said, you have the same disease that I.

And she said, you know, it’s too late for me, but I pray for you every day that you’re going to live longer than me and you talking about some waterworks that are happened in that room that evening they happen and the hugs and the love that you get from somebody that actually dying. Um, amazing. So I continued to work that kind of a schedule.

Um, and was fortunate because I had a company that I was new at, essentially when I got this diagnosis, um, that allowed me that and paid me when I couldn’t work even paid my base salary when I could not work. So, um, I was blessed that God allowed me to be able to be there for that. So,

[00:08:24] Adam Walker: uh, and, and so, I mean, it sounds like you were really working through your treatment, like you mentioned, I’m just curious.

How did you find the physical and mental strength to continue to do that? Cause I imagine that’s gotta be very difficult.

[00:08:37] Stephanie Walker: Um, it was, it, it, you know, Physically. It was hard. Um, I, I didn’t finish my chemo. I really didn’t. Um, I only finished nine of the 12 Taxols because I had neuropathy so bad that I was falling and that person wants a quality of life.

I don’t want quantity. I want quality. I want to be able to enjoy what I have. I don’t want to be here just for the sake of being. And we agreed to stop after nine treatments. Um, so the strength, um, a lot, my husband, you know, would help a lot physically with this strength mentally, I realized that I had to do something to focus on somebody else and not myself.

Um, and being able to focus on. Providing care and comfort and love and peace at the end of life where people that gave me more comfort. Um, and that’s where I needed to be. I felt like that’s where God intended for me to be in. And that’s how I got through it. Um, and I had some good friends that group of people are provided the love and the support and the strength that I needed to get through and they continue to do that.

So, ah,

[00:09:51] Adam Walker: I love that. So, so that, that’s, uh, a great segue. You mentioned your family, so I’d love to know. I mean, what happened with your family? Uh, as you moved and had to change jobs and how did all of that impact your journey? Well,

[00:10:04] Stephanie Walker: it, it was different because we ended up moving from, from Louisiana where the diagnosis occurred in my initial treatment, you know, stage four allegate and then moved back to North Carolina where we had a home.

Anyway, we didn’t know what to do. You know, we could not afford two mortgages in cancer care. That was, we knew that. Well, it, it weighed out that it was cheaper, first of all, to live here in North Carolina where I live now. So I, you know, took that chance. It’s like, okay, now I need to start looking for cancer care.

And so I knew that if I could get into a facility that was a big on research. My chances of living with clinical trials and such are great. Um, and then finding a job, you know, that had the same kind of a schedule as I was used to working seven on seven. Fell right in my lap. So I started to work not immediately when I moved back, but started to work that schedule.

And then. The worlds, I guess, stopped a hole opened up and kind of swallowed me because I was then diagnosed with a blood clot in my lung, a pulmonary embolus. And then shortly after that I had a mini stroke. So that job I wasn’t at three months. So I didn’t have any, any cushion, nothing to fall back on.

[00:11:36] Adam Walker: And I understand that at some point along the way, you had to continue cancer care without insurance. And so I want to explore that a little bit. What did that entail and what realities were you forced to face? As it relates to waiting periods for social security, disability and Medicare,

[00:11:52] Stephanie Walker: it was a humbling experience.

When I had that diagnosis on a new job, I had no short-term disability. I had no long-term disability, no insurance. So at the end of the month, my insurance was going to go away. I thought one time that this was a clue to just give up and let nature take its course. Stop treatment and die. But the other flighting part of me was like, no, I’m going to go back and I never have begged for anything or ask.

I try not to ask for anything. So I started with my, um, cancer facility and I actually didn’t go to the social worker where most people would go. I actually went to the pharmacist instead, look, I know this is expensive. There’s gotta be a way, some way that you can figure out a way that I could still take my.

And I’m telling you, she found a program that would pay the copay or pay for my meds. And then she told me about a program that the hospital has. I applied for that and was approved for that as well. So it was like, my treatment was covered. I mean, I could go there and see my doctors and the bills would come like magically disappear.

I went to. Normal avenues that most people would go to your department of human services to apply for Medicaid. Uh, mind you, my husband’s retired. He’s older than I am. He’s retired. Um, so he was getting social security at the time and I didn’t qualify for Medicaid because his social security payments he got once a month, every month was $11 over the limit.

So I qualified for nothing there now. I don’t want to say, be mean about, it started me to be pissed off kind of, because here I am working every day in my life for almost 40 years as a nurse putting into a system. And the one time I need some. They turned their back on me. It’s on, it will still be on like donkey Kong.

So it was like, I pulled every string. I could that lady and social security so that I could apply for SSD. I, um, within two weeks they said, Hey, your quality, you, you know your executive, we approve your application and I’m thinking great. Oh, we forgot to tell you, you don’t get your first check for five months, five months.

What am I going to do? And that’s. Waiting period, what am I going to do? We can’t live off of his income. We, you know, his income could pay the mortgage and a car payment, but what about the other car payment or utilities? The food, you know, I even went applied for a food program and was, you know, given $12 a month.

So I was so excited. I took. Bring out the bottle of water regret and Raymond noodles and water for the rest of her life. We could get shrimp, beef, chicken,

[00:15:02] Adam Walker: all the flavors,

[00:15:03] Stephanie Walker: all the flavors, you name it, you know? And I said, well, don’t worry about your blood pressure buddy, because it’s going to take a hit.

But anyhow, I decided that since I didn’t have a job, I had to find something and mind you, when I was first diagnosed and lived in Louisiana, I lived my life. Everybody else. I didn’t realize there was a community of metastatic breast cancer patients. I thought I was the only black person in the world that had metastatic breast cancer.

That’s how I act, say now denial. I was or sheltered that I was, I didn’t know, until I had to start looking for a way to live. And I got on the internet and that was my job. Five days a week, eight hours a day. For two to three weeks, I did that all day long. So at the end of that, I had money for utilities, mortgage, car payment, gas to get to back and forth to, um, to work.

But it made me mad that I had to work that hard to find money. That I was entitled to. And, you know, everybody talks about, you know, the younger generations being entitled. I’m entitled, I am 62 years old now, and I felt like that I have paid into that system and I had to wait five months to get money out of it.

So, but I, but I was able to do that. And I was also able to, with the information from the cancer center, realize that, um, I could get insurance. Through healthcare.gov or better known as Obamacare. So, but then I also found a company that would pay my copays or I’m paying your news for that. So, you know, it worked out, um, but not without a lot of struggle and a lot of begging and pleading and humbled and cutting back on expenses.

[00:17:07] Adam Walker: So, I mean, it’s, it sounds like, I mean, you really. You really took your own advocacy very, very seriously. Uh, I think more so than, than a lot of other people would. So, so what would you like to tell our listeners about how to best become their own advocates for their treatment and for their healthcare, with their healthcare teams at the end of the day,

[00:17:25] Stephanie Walker: it’s all about you.

It’s all about you. It’s just you and God, it’s it, you know? Um, so you have to be aware first of all, of your own. And you need to know what’s abnormal, what’s normal. And if you have abnormal, when you go see somebody and if they put you off, because somebody else, if they put you off, you go see somebody else.

Don’t let somebody put you off. Especially young people is who I, my heart breaks for them because the doctors say, oh, you’re too young for breast cancer, or you’re too young for a mammogram, you know? You know, and I say that is because there’s a lot of doctors out there that had me and lost me because I will fire you in a heartbeat.

And in the cancer world, I look at it like this. If it weren’t for the misfortune of me having cancer, you wouldn’t have.

[00:18:19] Adam Walker: That’s true. That’s a, that’s a really unique way to look at it. And honestly, the, the willingness to let go of, of a doctor that’s not treating you well, I think is really, really important.

So to supplement that, uh, let’s talk a little bit about public policy. I know. Involved in public policy and advocating for lawmakers. Why is this so important? And what are some things that listeners can do? Of course, recognizing that I’ve got a call to action for our listeners at the end. So listeners make sure you stay tuned, but, but what, why, why is it so important?

[00:18:51] Stephanie Walker: It’s important because those that are making those laws. Are effecting us with metastatic breast cancer. Yes. I made it through the five month waiting period for SSD. There are women out there that are very ill that need money to live on that won’t live those five months. Let alone, after you qualify for that, you have to wait two years before you’re rolled into Medicare.

So you’re talking about 29. And remember when you’re first diagnosed with metastatic breast cancer. If you’re diagnosed with medicine that is de Novo right out of the gate, you’re given 24 to 36 months. So 24 months, you know, that’s less than 29. So, you know, you’re going to be a goner. So we need to. Band together and go to those policymakers.

Remember we put them there. Remember we were paying them. Remember they worked for us. It’s all about us. We remember. So we need to open up and let them know how we feel that we’re not going to be living to wait 29 months. We need those waiting periods to go away. To give us a better quality of life and not have to worry about where the next dollar is going to come from.

Or am I going to have to pay for food for my two year old? Where can I get my chemo this month? We need those waiting periods to go.

[00:20:20] Adam Walker: And so listeners in that regard, uh, we would like to ask you to take action in that, on that right now. So right now you can become an advocate for this text in BC 2 4, 0 6, 4 9.

That’s M BC 2 4 0 6 4 9. When you text, you’ll receive a link that will help you to take action in support of MBC access to care act. So like 70 just mentioned under current law, MBC patients are subject to a five month waiting period for SSD a 24 month waiting period for Medicare benefits, the MBC access to cure act waves, these waiting periods, improving access to care and quality.

For MBC patients. So right now, stop what you’re doing right now. Please text MBC 2 4 0 6 4 9. That’s MBC 2 4 0 6 4 9. Stephanie, your story has been amazing. I love. Your attitude towards life. I love how you’re an advocate for yourself, and you’re not putting up with anything that’s not helping you overcome.

Uh, so Stephanie, thank you so much for joining us on the show today.

[00:21:32] Stephanie Walker: Thank you so much for having

[00:21:34] Adam Walker: support for MBC week is brought to you by our partner, Merck. Thank you for joining us for this special episode of real. Focused on metastatic breast cancer, you can help the metastatic breast cancer community today by contacting your local lawmakers by texting M BC 2 4 0 6 4 9.

Or visit komen.org forward slash access to care.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen for more episodes, visit Real Pink.com and.org 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 at AGA Walker or my blog, Adam J walker.com.