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Talk IBC is where we discuss things related to inflammatory breast cancer, from patient's personal stories to the latest in research. This podcast is sponsored by The IBC Network Foundation.

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Julia Laursen, Patient to Advocate

June 09, 2025 • Terry Arnold • Season 3 • Episode 2

Julia shares her personal journey of being diagnosed with inflammatory breast cancer at age 32 while working as a travel nurse, detailing her treatment process over four years and eventual transition to patient advocacy work. She discussed her challenges returning to work after cancer treatment and her experience as a school nurse, highlighting the difficulties of balancing health and demanding professional responsibilities. Julia emphasized the importance of patient advocacy and participation in clinical trials, sharing her journey into advocacy work and her ongoing efforts to raise awareness and support others with similar experiences.

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Terry Arnold: Welcome to the Ibc network podcast talk. Ibc, I'm Terry Lynn Arnold. I have with me. JJ. Larson, Julia. I am so excited to meet you, and as I always tell people, I'm always sorry how we met. But you're one of my favorite people. I love to get to talk to you. You bring so much great insight. So let's just get started. Tell us about your diagnosis, and how this led to all the advocacy that you're so passionately involved in. Now.

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Julia Laursen: Yeah, so picture it.

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Julia Laursen: 19, no, I'm kidding. Picture it.

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Julia Laursen: I was working as a travel nurse during the pandemic. It was 2021

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Julia Laursen: it was the day after my 30 second birthday, and I was

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Julia Laursen: working in the very exotic location of Atlantic, Iowa.

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Julia Laursen: And I woke up. And yeah, and my right breast was red and swollen, and my nipple was inverted, and I was like.

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Julia Laursen: that's weird.

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Julia Laursen: called my sister, who's a CRNA. So the one who puts you to sleep in the or

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Julia Laursen: I was like, Hey, I've got this weird thing. And she's like, Hey, that's weird and went to work. That night I worked in the emergency room as a nurse. At the time. It was a Sunday. I worked for 3 nights straight, and, you know, told everybody I worked with. Hey, I have this weird thing. What do you think? And

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Julia Laursen: nobody ever mentioned cancer. If anybody thought it. They didn't mention it. We were all just like, Oh, it's probably an infection whatever. See your doctor, you know.

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Julia Laursen: So I went home, saw my doctor that I'm correct.

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Julia Laursen: Okay.

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Terry Arnold: I'm I'm gonna say something here, real quick. Okay? So what you're describing. It was a sudden onset, right.

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Julia Laursen: Yes, overnight, literally overnight.

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Terry Arnold: Overnight.

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Terry Arnold: Okay, continue on.

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Julia Laursen: Went to bed. 31 woke up 32, and you know, there we were, and

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Julia Laursen: went back to Omaha, where I was from

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Julia Laursen: saw my primary care, and she, too, was like, that's weird.

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Julia Laursen: She was like, you know, it could be an infection. I'm going to put you on some antibiotics, but and the butt is what saved my life, truly.

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Julia Laursen: But I'm also going to send you for some scans.

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Julia Laursen: Years later I've asked her what made you

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Julia Laursen: send me for scans? Why did you do that? And she said, I just knew something wasn't right.

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Julia Laursen: I just knew.

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Terry Arnold: She had not even heard of inflammatory. It was sort of.

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Julia Laursen: I never asked that question outright. I didn't wanna know.

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Terry Arnold: I understand.

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Terry Arnold: But she but thank God that she said, Hey, I got this gut feeling. There's something here.

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Julia Laursen: Yeah 100%.

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Terry Arnold: Yes.

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Julia Laursen: So then that Monday I went for my scans, and I thought I was just getting an ultrasound, but they were like, no, you need a mammogram first, st and I was like, whatever let's see what all the hypes about. Did. The mammogram.

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Terry Arnold: You would never! You're 32. You never had a mammogram right? You wouldn't be old enough for another. What? 8 years.

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Julia Laursen: Yeah.

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Julia Laursen: So I was like, Oh, all right, see if that's about. Did that. And then they were like, Okay, we're going to do the ultrasound

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Julia Laursen: did. The ultrasound in the tech was like, I'm gonna go get the radiologist quick. And even

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Julia Laursen: working in healthcare.

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Julia Laursen: It did not cross my mind that this was something bad and weird. I was like, huh! Must be some infection like not a thought in my head.

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Julia Laursen: The radiologist came in, and I just remember so vividly.

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Julia Laursen: he kept telling her. Take a picture at 9 o'clock, 9 o'clock, 9 o'clock, and

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Julia Laursen: meaning the location of the breast. And

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Julia Laursen: it's like, Wow, some infection. And

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Julia Laursen: then there was just this moment when we were done, and all 3 of us are just sitting there, mind you, this is during Covid. So my husband was out in the car waiting for me.

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Julia Laursen: Because he couldn't come in. And so it was just me and the radiologist and the Rad tech. It was like 4 o'clock in the afternoon.

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Julia Laursen: and he just looks at me and I look at him, and I'm like.

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Julia Laursen: what's up like, why aren't you talking to me? And he's like.

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Terry Arnold: All of a sudden things start feeling serious, don't they?

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Julia Laursen: Yeah, I didn't even realize, though

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Julia Laursen: I was like, what's going on. And he was like,

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Julia Laursen: I hate to tell you this, but you

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Julia Laursen: are highly suspicious for something called inflammatory breast cancer. And this is

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Julia Laursen: not great. And you need to see a doctor like yesterday. And he literally picked up the phone and called the surgeon, and the ball got rolling.

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Julia Laursen: I was in to see a surgeon within the week, I think.

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Julia Laursen: Not for surgery, but just for consult. And he said, the same thing like this is highly suspicious for inflammatory breast cancer, and

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Julia Laursen: I had never heard of that. I didn't know what inflammatory breast cancer was.

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Julia Laursen: I didn't know why it was bad, I knew nothing, and

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Julia Laursen: so he did a punch skin biopsy.

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Julia Laursen: and it came back positive. And again I was still just like whatever. I didn't believe it@firstst working in healthcare. I was one of those.

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Terry Arnold: It had to been a huge gut punch.

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Julia Laursen: I didn't believe.

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Terry Arnold: You walk in thinking this is no big deal, and you're a nurse. So you've seen a lot of scary things, especially being an er nurse. Right? You're just thinking, oh, this is just nothing. And who thinks cancer at 32.

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Julia Laursen: Right.

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Terry Arnold: And here you are trying to process what's happening.

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Julia Laursen: Well, I just didn't believe it. I just didn't believe I had cancer for like 3 weeks, because I had just gotten

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Julia Laursen: my 1st covid vaccine like a month prior, and this is pre them coming out, saying, You know, it can cause lymph, node swelling, and all of that, and I had gotten it in my right arm. So then, the week that my symptoms appeared was actually when I was due for my second vaccine and working in healthcare being science minded, I thought, Well, I'm going to do my second one in my left arm, and so, if the symptoms appeared there, then I know that they're all wrong.

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Julia Laursen: So in my mind, I just kept thinking, well, I'm gonna give it a month, you know. I'm not gonna believe this, because there's no way

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Julia Laursen: but no, it was, and.

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Terry Arnold: You're the

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Terry Arnold: of me in the sense that because you had, I kind of feel sorry for people in this situation like you were almost. You're diagnosed quickly.

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Terry Arnold: and it's it's you can't even handle that.

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Terry Arnold: Those words in the sense that so sudden I was missed on us for a long time. So then I started getting suspicious, and then I was grateful. Finally somebody knew what I had. But I've had some people say that the shock of it all when it's when it's good to be diagnosed quickly. Get on treatment quickly. But they say the shock of that is a hard process.

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Julia Laursen: Yeah, a hundred percent. I definitely didn't process it at all, for even in the moment,

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Julia Laursen: still not done processing, but yeah, so I did

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Julia Laursen: end up meeting my oncologist in Omaha. I loved her, Dr. Wells.

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Julia Laursen: Wonderful woman!

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Julia Laursen: And I remember I ended up.

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Julia Laursen: My husband was allowed to come with me. So we dressed up. I wore my birthday dress that I had gotten for my birthday.

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Julia Laursen: and, you know went in and met her. And

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Julia Laursen: you know, I asked her, what's the statistics right like? What are the odds here? And she's like, well, I normally don't talk about odds. But since you're in healthcare we'll talk with you about them.

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Julia Laursen: And I had always said, If I ever get cancer.

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Julia Laursen: because working overnights, you have a lot of these? What if questions? You know, you play games? And so I always say, Well, if I ever get cancer, if it's a bad prognosis, I'm not doing anything. Forget that I'm taking my money and running.

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Julia Laursen: and so she goes. It's like a

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Julia Laursen: 70, 30, 60, 40 range. And I was like, Oh, well, hmm!

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Julia Laursen: It's not low enough for me to take my money and run.

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Julia Laursen: but it's not high enough to feel super confident in anything, either.

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Julia Laursen: so yeah. So then I just I dove in. I joined every group I could. Todd, think I met you. I started learning everything I could about

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Julia Laursen: Ibc, and what that was what it means, and my life completely changed. I did primodal therapy.

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Terry Arnold: It is so bizarre that you walk into a room.

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Terry Arnold: and then you walk out literally, and your life has changed on a dime. You're on the phone, canceling everything, moving everything, changing everything. People don't think about that.

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Terry Arnold: Yeah, that sudden switch. They just they don't.

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Julia Laursen: I quit my job from the hospital parking lot.

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Julia Laursen: Shout out to Atlantic for being so cool about that.

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Julia Laursen: But yeah, so I did act chemo.

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Julia Laursen: and followed up by surgery. So I did. I found out I was brca positive, so I had a

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Julia Laursen: double mastectomy with

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Julia Laursen: oophorectomy and lymphovenous bypass, and that's I mean, I think if you're listening, you're probably aware. But if you don't, that's when they reroute one of your lymph nodes into a small vein called a venule to help kind of restore lymphatic function.

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Julia Laursen: And then I

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Julia Laursen: did radiation. So I did the standard 28, and then the extra boost to the scar line.

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Julia Laursen: Then I did a year of oral chemotherapy, a cdk, 4, 6 inhibitor

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Julia Laursen: and then I did another cdk, 4, 6. I think, Brazil.

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Julia Laursen: that's a cdk, 4, 6 inhibitor. Right?

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Julia Laursen: I did that, and I did that.

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Julia Laursen: And then I just finished that on May.

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Terry Arnold: So we're recording this in May of of 25. So you were basically in treatment for

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Terry Arnold: a couple of years.

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Julia Laursen: 4 years. Yeah, I literally just finished may 4, th the versenio, and I continue on Letrozole. I started Letrozole in

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Julia Laursen: the well December when I was done active treatment, and I continue on that to this day.

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Terry Arnold: Now I know, in the process of learning about this disease, and when we met you got very involved in advocacy, even when you're still in treatment. Can we talk about that a little bit?

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Terry Arnold: Not the advocate license.

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Julia Laursen: Really pushed me to get involved in advocacy was 2 different things. The

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Julia Laursen: 1st one was I met with

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Julia Laursen: a local social worker in Nebraska, and at that point I knew that I was considered what's called an Aya so adolescent young adult in the cancer world. Anyone diagnosed between 18 to around 39, depending on who you ask

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Julia Laursen: is considered a young adult, and so I knew I qualified as an Aya

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Julia Laursen: went and met the social worker, and I said, Yo, hey?

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Julia Laursen: She'd never, she said, you're not a young adult, and I said, Oh, okay.

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Julia Laursen: And this is pretty early on. So I wasn't confident. Yet I thought, well, maybe she's right.

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Terry Arnold: 32 sounds like a young adult to me. Yeah, I mean, that's young from cancer.

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Julia Laursen: And so she said, I wasn't a young adult, and she also said not to apply for social security. Disability.

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Julia Laursen: she said, don't apply. It's a waste of your time. You'll never get it, and you'll be back to work in 9 months.

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Julia Laursen: So I thought, oh.

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Julia Laursen: she knows what she's talking about. This is her job. She's the breast cancer social worker, and I didn't apply

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Julia Laursen: got done with active treatment, run out of money.

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Julia Laursen: and knew I needed to go back to work.

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Julia Laursen: and had just signed a contract to go back to work as a school nurse, because there was no way I could go back to working 12 h shifts and all of that.

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Julia Laursen: And that's when I found out that Ibc was on the compassionate allowance list, and I.

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Terry Arnold: I'm gonna interrupt you here for just a second, because

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Terry Arnold: when you say you couldn't have gone back

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Terry Arnold: to nursing full time, you were working in an emergency room very long, demanding hours on your feet. Really, really quick? Was there some chemo fog brain? Was there fatigue? Was there dexterity issues because of lymphedema. If you're comfortable, can you say some of the reasons why you felt?

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Terry Arnold: Go into that super hard, fast pace.

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Julia Laursen: Literally everything you mentioned.

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Terry Arnold: Yeah, but that is demanding, I've worked in hospitals that's demanding.

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Julia Laursen: Yeah, literally everything you mentioned, and then some.

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Julia Laursen: And being a travel nurse, I worked overnights, which is a known carcinogen. It causes cancer. So I definitely wasn't going to go back to that right? And then, but yeah, Chemo brain was a big one and continues to be one I struggle with. And quite frankly, there's not enough

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Julia Laursen: treatment for that which is when your brain just doesn't work as well as it used to.

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Terry Arnold: And I think it it takes some recovery time for what we've been through in the treatment. But also I was thinking of something else about your immune system is tanked.

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Terry Arnold: and so to be in a hospital setting, where you're exposed to God knows what every single day that may not be the best place for you, and it's interesting. You were told you couldn't apply for social security, because I remember the moment that you found out you could, because we were together

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Terry Arnold: at an event, and you went

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Terry Arnold: crap! They lied to me, and you practically ran out of the room.

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Terry Arnold: They have to go.

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Julia Laursen: How is it set up.

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Terry Arnold: Because that system was there under the government under social Security administration, where Ibc is listed on the compassion allowance list, and that can make a big difference. It doesn't mean you're never going back to work again, but that can make a big difference in your life, and it's money that you've earned. It's not charity.

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Julia Laursen: Well, and I think I went back to work much too soon as well. I felt like this opportunity was in my lap, and I couldn't bypass it to be a school nurse, and I don't think anyone was ever in danger. I don't want people to think that, but I think the only person in danger was myself. I never got Covid working in the er got it twice, working in the schools

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Julia Laursen: which really affected my cognition even more.

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Julia Laursen: And yeah, I just didn't give my body enough time to heal. A very smart woman

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Julia Laursen: sent to me. A great way to find out if you are ready for work

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Julia Laursen: is to go sit in like a library, a coffee shop anywhere.

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Julia Laursen: and Terry's smiling because it was her who told me this and

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Julia Laursen: just work for 8 h and see if you can do it. And did I listen? Of course not. And I wish I had, because I would have realized the toll that it really took on my body, and how hard it was.

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Julia Laursen: The only real saving grace to my time as a school nurse is that

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Julia Laursen: I had a really supportive boss, and she would really help and pick up the slack. If I couldn't do it. She would let me come in late for appointments. She would let me leave early for appointments, because she knew that I was really trying to make sure that I would miss as less time as I needed to.

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Julia Laursen: And the kids, the kids. It was high school. So the kids I went in. I had hardly any hair

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Julia Laursen: because I finished in December, started in January, right? And so they all knew something was up. But then, once they kind of found out. It helped me get street cred with them.

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Julia Laursen: but they were also just really really understanding. They knew if I had the lights dimmed in the office. It probably meant I wasn't feeling well, and you know don't come in like

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Julia Laursen: a pack of bowls raging, you know.

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Julia Laursen: but yeah, even that, though just ended up taking its toll in

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Julia Laursen: October of 23, my oncologist was like, listen, you are literally. You did not survive cancer

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Julia Laursen: to kill yourself working.

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Julia Laursen: She was like, you either need to go on intermittent Fmla

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Julia Laursen: to really deal with these long term side effects you're having, or you need to quit

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Julia Laursen: because you're gonna kill yourself and.

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Terry Arnold: They realize truly the toll, and I do think we need some recovery time. So I'm glad that you did find out about the social security. Did you find the process difficult?

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Julia Laursen: Yes, I've only actually just started the process.

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Julia Laursen: So after my oncologist told me, you know. Hey?

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Julia Laursen: Get your life right?

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Julia Laursen: I went on, intermittent. Fla

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Julia Laursen: so I would. What that means is I could work. But if I wasn't feeling well, or had extra appointments, or whatever I could take that extra time off and go to those things without my job being in jeopardy.

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Julia Laursen: And so I finished out the school year because that was really important to me. The situation I walked into was that the nurse before me had passed away in the middle of the school year, and so I really didn't want to leave those kids in that same situation again where they lost a nurse in the middle of the school year.

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Julia Laursen: So it was really important to me to not inflict trauma on these children.

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Julia Laursen: So I finished out the school year again with all of those helps and systems in place. Right.

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Julia Laursen: And then I took off for the last year.

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Julia Laursen: I wasn't ready until just recently to admit this might be my new baseline forever.

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Julia Laursen: I've done tons of testing, neurologic, testing, physical testing, all of it.

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Julia Laursen: And it's been really hard to admit, like, Hey, I can't work the traditional.

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Julia Laursen: you know, 9 to 5 or 7 to 3 like I was and that's what disability is. It's not so much

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Julia Laursen: saying you're unable to work. It's you're unable to work at the capacity you were, and I had to.

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Terry Arnold: Good, very difficult, because not that people don't love their jaws. But I think nursing is a unique calling.

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Terry Arnold: and I would I would think that would be a very hard thing for you to say.

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Terry Arnold: I can't do this. It's because you're young, and you think I'm going to bounce back, or people say, Oh, just push past it, fake it till you make it. I know for me

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Terry Arnold: that 1st year out of treatment, and I don't scare anybody who's listening to this, who is facing the cancer journey and thinking, I don't want to do this. But I was not okay. For a year. I basically just sat in a corner and drooled. I feel like I

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Terry Arnold: I did not have. I was a 24 7 person. I didn't ever forget anything. I didn't write anything down.

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Terry Arnold: I had to pace myself. I had to write things down. I needed a little time, and it didn't mean that I didn't have things to offer.

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Terry Arnold: but I couldn't do it as quickly, as efficiently.

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Terry Arnold: I needed a little bit more time.

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Julia Laursen: Yeah.

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Julia Laursen: And do you want that person to be

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Julia Laursen: your emergency? Do you want that person who can't remember everything to be your emergency room, nurse. I don't know.

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Terry Arnold: No, I worked in the physical therapy department next door to the emergency room, and I saw the demands of that field and also my job when I was young in physical therapy. It's a very physical demanding job.

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Julia Laursen: Right.

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Terry Arnold: It's it's it's not a desk job. I'm not saying that being a school nurse is easy, but at least you can sit down every once in a while, or something like that. But when you're working in on your feet, Job, even just a sales clerk, you're constantly moving now. So you got through treatment, you you got the right information about social security. So you're just now applying. But you've been doing things this last year that you say you took off, which

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Terry Arnold: again, people might say, well, she's doing these things, but but you're getting to pace yourself.

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Terry Arnold: and you're doing things about advocacy that's helping you learn.

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Terry Arnold: as you also give back. So can we talk about that? Because I think those are some important things you're doing.

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Julia Laursen: Favorite. Love it. But I want to circle back really fast. So.

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Terry Arnold: Okay.

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Julia Laursen: The other thing that led me to advocacy was.

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Julia Laursen: I had joined some Facebook groups,

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Julia Laursen: specific to inflammatory breast cancer. And everyone kept telling me, go to Md. Anderson, go to Md. Anderson, but no one, because Md. Anderson has one of the few inflammatory breast cancer clinics and the 1st inflammatory breast cancer clinic in the nation.

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Julia Laursen: But no one could really articulate to me

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Julia Laursen: why I should go, and working in health care. I knew I was getting the standard of care. I knew I was getting the care that Md. Anderson advised, so I didn't understand. And it wasn't until that

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Julia Laursen: second Covid diagnosis in October of 23, you know, when my doctor said I was killing myself, that I finally went to Md. Anderson.

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Julia Laursen: figured out why it was so important. And then I was like, there needs to be people telling people in an articulate way, in a concise way.

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Julia Laursen: why you want to go to these clinics. What makes them different? Not just, oh, they're the best, that's fine.

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Julia Laursen: We have pretty good health care in Nebraska. We have like a bazillion schools like it's fine. But there is a difference. And

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Julia Laursen: so

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Julia Laursen: learning that difference is what kind of made me realize. I want to learn even more. And so

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Julia Laursen: My grandmother passed away, and she was like my best friend.

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Julia Laursen: and she left me just a little bit of inheritance, and it was enough

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Julia Laursen: to kind of. Go to my husband and say, Listen, you work remotely. You can continue doing that. There are all of these cancer events and education experiences and conferences and camps that I've been wanting to attend.

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Julia Laursen: but I haven't been able to, and so I think we should

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Julia Laursen: give up our lease and hit the road.

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Julia Laursen: And so that's what we did. We

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Julia Laursen: had our 1st stop. Be Asco

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Julia Laursen: American society, clinical oncology's huge cancer Conference. I think it's probably the biggest and at least the United States.

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Terry Arnold: About 40,000 attendance.

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Julia Laursen: 40,000 people, and I'm so naive. At the time I thought I was just gonna walk in and be like, I'm a patient advocate. Somebody hired me right. But it was a great experience. I learned so much, and

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Julia Laursen: some things I wanted to learn, some I did not, and

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Julia Laursen: from there. I just it snowballed, and we attended.

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Julia Laursen: Oh, golly! I have it written down somewhere. I it was like 14 or 15 different cancer events and over the course of the last year, and we just kept extending our travel time because we were loving it. And now we've landed in Colorado springs.

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Julia Laursen: and we are based out of here. Now

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Julia Laursen: we'll see where the life kind of takes us.

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Julia Laursen: But advocacy has been amazing. The more I'm in it the more I get involved and kind of started

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Julia Laursen: way back in Omaha. My, there's this wall at our cancer center, and it has pictures of people and little articles about them. It's called the Faces of Hope, and I

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Julia Laursen: have to walk by that wall every time I go in, and I was like, I wonder when the last time was they updated this? And so I mentioned it to my lymphedema therapist. And she said, That's so funny. They're looking for people to put on there. Do you want me to tell them you're interested? And I was like, Heck, yeah.

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Julia Laursen: and so from there it snowballed. That opportunity led to being asked to be on a panel at the Nebraska Cancer Coalition Conference, and then I reached out to you, and I said, Hey.

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Julia Laursen: you know I'd love to maybe host some booths locally on inflammatory breast cancer.

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Julia Laursen: And you kind of gave me the training and made sure I knew what I was talking about, and the Iuc Academy, and all those things, and

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Julia Laursen: had my 1st booth about Ibc at my sister's keeper walk in 2023 in Omaha, which is a walk for black women affected by

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Julia Laursen: breast cancer and

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Julia Laursen: Ivc. The statistics say that it affects black women more than white. So it was really amazing to educate on this disease that many hadn't heard of, and I had oranges there. And I said, this, you know, is what your breasts look like, and the cute orange skin and all the things, and I that was one of the best experiences. And then

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Julia Laursen: that's led. And then from there eventually I started

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Julia Laursen: an adolescent young adult support group or share cancer support. We meet once a month on Zoom. It's myself and 2 of my really good girlfriends, and we lead the support group

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Julia Laursen: for any young adult affected by breast cancer, not just inflammatory.

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Julia Laursen: and all of that. Then I did project lead in La Jolla. That is a 6 day. Intensive science, intensive on

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Julia Laursen: cancer and research. And how research is done. And from there I did.

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Julia Laursen: The Department of Defense every year Funds.

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Julia Laursen: I don't know what it is now. They fund research for

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Julia Laursen: different diseases. And because people in the military can get cancer right? And so

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Julia Laursen: part of their grant giving is they have patient advocates serve on the panels right alongside the scientists.

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Julia Laursen: So I was selected for that. So I did that last year as well, which was so cool, was a lot of work, even working in healthcare. I had to watch hours of videos because I was like, What am I reading? But it was.

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Terry Arnold: I've done the project lead course on the project lead grad, too, and I've reviewed on the Dod, and it's something that I really encourage people to get involved in, because they don't realize we get to be at that table when somebody's a little intimidating with the same equal voices the physicians and researchers, but we can bring a unique perspective to it that helps them. So it's something I'm glad that you got to do.

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Julia Laursen: Yeah, it was awesome.

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Julia Laursen: hope I can do it again. We'll see. Call your senators, tell them to fund it, you know. And yeah. So, Dod. And now, recently, I have kind of branched off into the clinical trial world. So I'm serving as a patient advocate on

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Julia Laursen: 2 different clinical trials out of Md. Anderson. One is the trip trial, and that is utilizing psilocybin to

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Julia Laursen: alleviate anxiety and depression in cancer patients and cancer survivors. It's open to survivors, now to

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Julia Laursen: so that's really cool. And then I am getting involved in some inflammatory breast cancer research as well at Mv. Anderson as a patient advocate, and

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Julia Laursen: people are always like, How do you get involved? And another very smart woman

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Julia Laursen: told me very early on Aka. Terry.

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Julia Laursen: Show up, show up, show up! Show up!

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Julia Laursen: So one of those.

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Terry Arnold: Tell you enough how much it matters to physically show up to events, not virtually, if possible, physically.

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Julia Laursen: So I was in Houston. This is a perfect example of showing up right. I was in Houston for lymphedema treatment. One of the many lovely side effects. If you're watching, here's my custom sleeve. Thanks, Erin, shout out, and

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Julia Laursen: I was down there to do a month of wrapping because I had a really bad lymphedema player.

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Julia Laursen: and I knew and I had.

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Julia Laursen: I just torn my acl at a cancer camp for young adults. It was so fun, though, so I was kind of immobile, and Terry reached out and said, Hey, there's this conference going on. If you know you want to come and sit in a different place

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Julia Laursen: make use of your time. And I was like, Heck, yeah. So I went, and one of the presenters was,

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Julia Laursen: moron, Dr. Moron, who's the head of the trip trial? And he.

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Julia Laursen: I thought, that's really cool. And

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Julia Laursen: so, you know, I'm just sitting there, and it's his turn to speak, and he gets up from my table. He was sitting with me the whole time, and he goes, and he gives this great lecture on the history of psychedelics, and you know what's led to this trial. And then he comes and sits back down, and I was like, Oh, my gosh! I have to introduce myself. This is the universe telling me.

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Julia Laursen: And so I went and introduced myself. And I said, You know, if you're ever looking for patient advocates. I would love to help, he said. Yes, please come to our next team meeting, and I did. And it's just snowballed from there. And now I'm out here telling people to go to Md. Anderson and take a psychedelic. It's kind of crazy coming from a nurse, but I truly believe in it, you know, it's they're having great results, and it's showing great promise and not just for

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Julia Laursen: you know, anxiety and depression. But for other things, too.

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Julia Laursen: Nerves are kind of the

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Julia Laursen: unresearched. I don't want to say, maybe under research, part of cancer, I don't feel like there's enough research going into how the nerves and the neurons. And that system plays into cancer development. And so they're finding super awesome things out. And the ways that this can help is just phenomenal. So yeah, it's just been awesome. And now I'm actually getting on the speaking circuit, too. I'm talking at a

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Julia Laursen: I'm on a panel in July in Austin

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Julia Laursen: for advanced practice providers. Aap OS,

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Julia Laursen: I will be on the we're giving a talk on the ecosystem of patient advocacy.

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Julia Laursen: So that was.

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Terry Arnold: Maria.

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Julia Laursen: Yeah.

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Terry Arnold: I want to make sure. I know the days of what you're doing in July, because Austin is just a stone's throw from me since I live on the far west side of Houston. It's door to door from my house to downtown. Austin is 2 h, so that's easy.

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Terry Arnold: I'd love to come and cheer you on. It's so exciting to see what you're doing, because, you know, you're getting yourself as close to the research, too, so hopefully, you can help others. But you're helping yourself along the way. And I think it's interesting when you that people say Go to Md. Anderson. It's the best. Well, there's a lot of really good centers, and obviously, and then but when you say that we told you why, I think the why is really important, we hear is the best, but we don't hear anything else.

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Terry Arnold: and there was little bitty things that I wanted to talk about like. Should you get the Covid shot before you have your pet, or after you have your pet, or what is the order? How do these things play into us as a cancer patient, or those little nuances I find, get kind of glossed over other places.

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Terry Arnold: Example. But I just feel like that there's there are. It's a different microenvironment to be at an Md. Anderson or Dana-farber, or someplace like that that specializes in Ibc, because this disease behaves differently, and I think you need that learning curve

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Terry Arnold: of how it behaves differently, because even if another place is following the algorithm, sometimes the disease isn't following the algorithm. And it's like, Oh, this is a weird little thing happening. Oh, well, we'll just keep going forward. No, you might need to change.

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Terry Arnold: and that's where the experience gets in. And hopefully, then that experience can be disseminated more into other places. But you, as an advocate, are making that happen. Now, what is kind of coming up for you? Because I know you.

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Terry Arnold: You can't tell me everything you're up to right now, but you've got some things in the work. So how do you want to wrap this up about.

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Terry Arnold: maybe for someone. Also, I think we need to do a shout out to your husband, Mitch, who I know the partnership co-survivors, but I view him as unique one in the sense that he's right there with you doing advocate things when we have the ultimate meetup. He's led. Family sessions have been very popular. I love how he'll come to me, and he'll say, I don't want to get anything too heavy. But what's the meaning of life? And I'm like, there you are, mitch right off the bat. I love it. He's so cool.

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Terry Arnold: but I think to have that support is incredible. But also he's made a place for himself, because I think our co-survivors are not taken care of. Well, and we need to better that. But so like, do you have some kind of takeaway you want to give.

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Terry Arnold: If someone has hesitancy about going to a specialty center, do you have any advice? And then

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Terry Arnold: how can they follow you to know the cool things you're doing? Next? Let's do those 3 questions.

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Terry Arnold: Take away.

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Julia Laursen: Pay for it.

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Terry Arnold: That 1 1.st

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Julia Laursen: Hey! Take away! Show up!

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Terry Arnold: You know what.

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Julia Laursen: Show up!

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Terry Arnold: Whatever it is, treatment, advocacy, whatever. Just show up.

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Julia Laursen: Show up, and if it is advocacy that's I feel like.

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Julia Laursen: and I don't know if you agree with me or not. But people ask us all the time. How can I get involved? I want to get involved, and it's you have to know what you like doing.

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Julia Laursen: so kind of know yourself and show up right like. I don't really like getting involved in the whole policy. And Washington, DC. And all of that like. That's not my vibe, and I know that about myself. So I don't go that direction right? I go the other directions. I'm very involved in the young adult world, because that's what I'm passionate about. And I've made so many friends in this community and have.

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Julia Laursen: I've had them die, and I'm passionate about making sure that

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Julia Laursen: we aren't dying, one and 2 that they know about the resources out there to

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Julia Laursen: get the best care possible, right? Which kind of leads into your.

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Terry Arnold: It's a good thing to say to show up, but also know yourself, because in that way you you not that we can't always learn new skill, sets, or do new things, and stretch a little bit. But also, what are you good at? Because it might seem easy for you. But it's not easy for somebody else.

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Terry Arnold: and so you can bring your gifts to the table, know yourself.

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Terry Arnold: and and then show up, and then we can pace ourselves and do it. Okay, that's a great takeaway. Now, the the second thing was I said, take away.

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Terry Arnold: Why go to specialty center, and and sometimes people resent it, acting like it's just for the privileged. But I think we can also bring

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Terry Arnold: knowledge back to our community. So what would be your why, to try to get to a specialty center.

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Julia Laursen: Why would be to have the most up to date resources and opportunities.

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Julia Laursen: And it's not always just about yourself, but the future, too.

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Julia Laursen: An upcoming trial is gonna involve getting information right from

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Julia Laursen: diagnosis. Essentially. And if you're not at

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Julia Laursen: those cancer centers like, you know, the Md. Anderson.

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Julia Laursen: I mean, I just keep dropping them. So I'm just gonna keep saying them. But if you're not at Md. Anderson, you wouldn't know about that trial, and you couldn't help advance the future.

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Julia Laursen: And so.

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Terry Arnold: That's very important, because you and I are standing on the shoulders of giants that ran before us. We are well, because someone was in a trial before us. We are well, because someone gave a sample that made something get studied, you know, so we can pay it forward if nothing else, by showing up.

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Julia Laursen: And I think.

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Terry Arnold: Especially.

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Julia Laursen: People don't realize a trial doesn't mean you're getting

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Julia Laursen: worst treatment, or you're not going to get treatment, or that it can be as simple as you're getting a blood test.

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Julia Laursen: You're just getting a blood test, and they're checking certain things in your blood every

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Julia Laursen: along the course of your treatment. And you can do a lot of that wherever you are located at

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Julia Laursen: and that can shape the future of medicine, you know.

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Julia Laursen: so yeah, definitely for the trials aspect. But just so you have the most up to date. Ibc information. While I was getting treated.

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Julia Laursen: radiation was switching to twice a day versus once a day, and I knew about that. And

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Julia Laursen: in my head it was like, What's

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Julia Laursen: the difference? It's the same dose. And I and my radiation oncologist in Nebraska was on board to let me do twice a day, but I was the one who said, I just don't get the reason. It's the same dose like I just don't understand. And so I decided not to. And I think if I'd gone to Md. Anderson they could have articulated to me. Well, the reason is, is, Ibc cells grow so much faster.

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Julia Laursen: And so the thought is is that if we do it twice in a day we might get some of those that would be waiting, you know, until the next day, and you're hitting it twice as hard, truly.

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Julia Laursen: and that's just.

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Terry Arnold: So it's about the why, and we aren't told that.

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Julia Laursen: Yeah.

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Julia Laursen: And I was trying to disseminate all this information on my own from Facebook and everything else, and if I had been at Md. Anderson sooner. They probably could have explained some of that. Why, a little bit better.

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Terry Arnold: Now, okay, so how can they follow you? Because you go? A lot of people call you Jj. But your name is Julia Larson, and so I know that you do a lot on social media.

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Terry Arnold: So which social media would you like to be followed on.

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Julia Laursen: Instagram's great Jj's joyful journey. 89

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Julia Laursen: is great. We will be announcing some big things very soon within the year, hopefully. So that's exciting. But yeah, I also am always posting about the opportunities that I've been to, or that I know about, and that's how you find out about them right? And so if you follow me, you'll probably find out about things you didn't know existed, and you may see a cute dog or 2, so who doesn't like dogs?

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Terry Arnold: I know Oliver's great now, and and one thing that's interesting to me is

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Terry Arnold: when you go to all these cancer conferences to me. You're meeting with the true experts which are the other patients.

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Terry Arnold: There is a wealth of knowledge there, and you talk about these places, and so that might help somebody decide. Hey, this is worth my weekend, or this is worth a place to volunteer.

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Terry Arnold: and I'm glad that you're in Colorado Springs. I know there's some projects you want to get involved there about the scars of beauty with somebody else that we know, that has Ibc and just various things so they can find you on Jj's joyful journey on Instagram. We also have you cross-linked on our website because you've given a lot of stories of hope. You put things into walking on quicksand. I hope you'll consider doing another submission about some things you're doing right now.

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Terry Arnold: and so then people can also like you name it. Jj's joyful journey about having cancer. But you are trying to find the joy in life.

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Terry Arnold: even though we aren't trying to blow smoke that this sucks right. This is awful. Having cancer is awful, but there is some joy in it, and we want to live past it and do better. And you're doing something about that. So I hope they follow you on your Instagram like and share it. And all those good things to, you know, keep it up in the algorithm and support what you do in the future with the support of Mitch and your little dog baby Oliver.

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Julia Laursen: Yeah, I'm a baby boy who, you may see at a conference. He's been known to crash them so.

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Terry Arnold: I know he's big. I think he doesn't have his own Facebook page, or is he guys something? Now.

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Terry Arnold: the other day and I was laughing. I think that's great. Well, Julia, thank you for being with us today, and I I think we kind of covered all the things that we'd hoped to do. I know you and I could talk forever, but I'm just so glad for your wellness.

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Terry Arnold: and I'm glad that you're taking the angle of paying it forward and helping and send all my love to Mitch. Okay.

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Julia Laursen: I will!

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Terry Arnold: Okay, thank you so much. We're gonna stop mute and.