Adam Walker (00:00):
This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc.
Adam Walker (00:09):
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.
Adam Walker (00:22):
Advocating for a patient is an integral part of a patient’s healthcare journey. However many family members are unexpectedly thrown into this overwhelming situation with no idea of how to be an influential patient advocate. Not to mention patients also should understand how to advocate for themselves when possible. After losing her sister today’s guest was determined to make something good. Come out of something tragic. That is why she spent most of 2019 writing a book called bad-ass advocate, becoming the champion. Your seriously ill loved one deserves, which was published in March of 2020 here today to share some of her strategies to become a bad-ass advocate for either yourselves or a loved one is Erin Gallian. Aaron, welcome to the show.
Erin Galyean (01:06):
Thanks for having me. Well, I’m excited
Adam Walker (01:08):
To talk to you. We’ve talked on this show about advocacy many times before, but I feel like we’re about to level up on that. So let’s let’s get started. I understand your sister was diagnosed with three diseases in the span of a few months. Why don’t we start there and tell us a little bit about,
Erin Galyean (01:24):
Okay. Yes. So it was quite a year. So first my sister was actually diagnosed with an autoimmune disease and at the time that she was diagnosed with the autoimmune disease, we didn’t realize that she had had cancer for probably about a year. So she had non-Hodgkin’s lymphoma and that caused the ADI new disease. And then few months later we found out that she also had a lung disease that was caused by the autoimmune disease. So the kids are kind of kicked everything off and really it was a tragic ending because she had this lung disease that was rare and aggressive. And I always say, it’s the one time in your life. You don’t want to be rare is when you have a disease, we all are probably familiar with that.
Adam Walker (02:09):
Yeah, that’s tough. And so obviously you were watching your sister go through all of this. What was it like watching her go through the pain of that journey and what emotions did that bring up?
Erin Galyean (02:20):
I’m so glad you asked me about emotions. I don’t feel like we talk about emotions enough when we talk about illness, but we’re all having them. So I don’t know why we don’t talk about it. I had a lot of anxiety, actually. I had anxiety the idea of losing her because at the time that she was diagnosed, we weren’t told that she was terminal and we didn’t find that out till months later. But then I also had a lot of anxiety for her and for everything that she had to go through. So she did go through chemo, which I’m imagining that a lot of your listeners are either going through that, where they have gone through that. And you know, she was, she was determined to kick cancer’s butt and she didn’t use that exact last word, but she did beat the cancer, but because it caused that aggressive lung disease, it was a rough road for her and I’m quite an emotional one as well for her and for the rest of my family.
Adam Walker (03:13):
Yeah, I can imagine. And I understand that you have a background and career in pharmaceutical sales as a trainer. And so how did that help you sort of advocate for your sister?
Erin Galyean (03:24):
Yeah, that was interesting because I’ve been in pharmaceutical sales, the industry for 20, over 20 years, but I got the training in the last like 10 and so I was a rep and then I’ve managed non-human trainers. So I’ve had different perspectives of the pharmaceutical world and I’ve learned these tricks of the trade along the way. And now I train other reps. And one of the key things that I have had, I do train reps on is how to speak to physicians as a patient advocate. What is probably one of the most common things you do is you’re the voice of the patient. And so it really helped me. Number one, I’m very comfortable speaking with physicians, but number two, I have these techniques that we use, like when you are giving pushback to a physician, there’s actually a way you can do it where it doesn’t feel like you’re being aggressive, or it sounds like it’s just a conversation and actually speak about it in the book. So, so I can teach others how to do it effectively, especially those of us who can’t stand confrontation and have this hybrid Bard for physicians, which understandably, you know, respect the physician. But sometimes you need to get pushback. This is your loved one’s health on the line, and you have to have a voice for them.
Adam Walker (04:40):
That’s right. That’s right. I mean, you’ve gotta be able to, to talk through it with the physician and you’ve gotta be able to, like you said, to push back at times where you know, that it’s necessary and that’s, that’s tough to do. So, so tell us a little bit about, you know, your sister’s passing and how that changed your life and led you to writing this book.
Erin Galyean (05:00):
Yes. So my sister, Megan was not just my sister. She also is my best friend. So we talked on the phone every day and we’re just very close growing up. I was really blessed and I even said this when she was alive and way before she was sick, I knew I was blessed to have her as a sister. She was almost like a mother figure. Sometimes she’s a little bit older and she just was a kind heart. And everyone who knew her just loved her because of her gentle spirit. And she was so thoughtful and kind. So, so I was really lucky. And when she passed away, obviously it really was painful. It still is. I mean, I’m not going to lie and say I’m over it. I’m good. No way. I don’t think I’ll ever just get over it. I know I won’t because she’s so special and big part of my heart.
Erin Galyean (05:46):
The only way that I knew that I could actually get through the rest of my life is to do something positive with that pain. And when she was actually in the hospital is when I came up with the idea of sharing what I was learning with others, not for a book, I thought about actually training people in the hospital. So because I’m a trainer, I thought, you know, they get classes in hospitals. I know I took them when I was pregnant. And so for CPR. So they’re usually downstairs and I could have people who are the caregivers, the family members upstairs come downstairs. I could tell them a little bit about advocacy and it could go back up and use my techniques. But then I thought more about it. And after speaking to some physicians and I realized if I wrote a book, I could probably help a lot more people than just maybe a little community. So that’s how I kind of landed on writing a book. I also was an English major, so it’s been a dream. So I kind of had a couple of things coming together. Not the subject I planned on writing about people that were lighthearted and fun, but in the end, I’m very passionate about it. And the reward of helping others is so much greater than writing. Yeah.
Adam Walker (06:55):
Yeah. That’s, that’s, that’s wonderful. And I think you’re right. I mean, it’s such a great medium to disseminate that information to such a large audience. I mean, we’re able to talk about it now and if any of you are listening and are an active advocate, you may be a great, a good option for you to take a look at this. So, so last question. Aaron, excuse me. I’ll have to edit that part out. I don’t know. Something’s been going on my voice last couple of days, so I’ll apologize. All right. So last question, Aaron, I’d love for you to share your strategies or at least some of your strategies with our listeners. How can they become bad-ass advocates themselves? Yeah. Let’s
Speaker 4 (07:33):
Get to the good stuff. Right? So I love
Erin Galyean (07:37):
To share someone. I’ll share a few that I feel like are the best ones. I’m going to give you the good stuff. And then in the book, there are others that are also wonderful, but I’ll give you what I think are the best. So number one is build a support team. So some of these people may think, well, I don’t have any family around in the book. I give you many ways. You can build a support team. I think as a caregiver, as a patient advocate, you need to have other people helping you. It’s just too much for one person to take on. Especially if you have a patient who’s going through chemo, they’re exhausted. They’ve been through a lot physically. Maybe they’ve had a double mastectomy and they’re just laid out for awhile. So then you need that help. Maybe you need help with the kids or cooking dinner.
Erin Galyean (08:22):
There are ways that you can get help through the community, through your friends, through your family. And that way it’s not all on you in this world. We’re so willing to give help. Sometimes you’re not willing to take it. And as a patient advocate, please, I beg you. Please take help. And a lot of times people don’t know how to give you help. So don’t be afraid to speak up because they want direction. So if you can come up with a list of ways that people can help you, that will make it easier on everyone, including yourself.
Adam Walker (08:54):
That’s right. I that, okay.
Speaker 4 (08:56):
All right. Any other ones? Okay. Yeah.
Erin Galyean (09:00):
So another one that was, I think the best thing that we did is we recorded conversations with physicians. So I always have a caveat to this, so I kind of jumped right into it. So let me explain it. But number one, be sure that if you’re going to record any conversation with anyone, you’ve asked her permission, this is not about catching a physician, making a mistake where lawsuits are not about that at all. It is about communication and being clear on next steps and direction. So as a patient advocate, it is very difficult to keep track of everything. So of course you want to have a notebook. That’s a no-brainer I bet most advocates listening are like, of course I have a notebook. So taking that one step further, also get out your phone. We all have a smart smartphone and use the voice memo or the there’s apps that you can use to.
Erin Galyean (09:49):
You can also buy an old-fashioned like 1990s recorder, if you want. They do sell them on Amazon and record those conversations because a few reasons, number one, you can, with the patient’s permission, you can share those recordings with the support team. So this is what my family did. So if my mom was going with my sister to the hospital and, or a doctor’s appointment, and they had a conversation, my, my sister’s overwhelmed. She’s getting a barrage of information about our health as I’ve been a patient before, not with cancer or anything serious, but where you kind of get in this other zone where you like out in a way you hear one thing and you’re so focused on the one thing that you’ve heard, that you don’t hear anything else. And I think that’s natural for humans to do that. And that’s why it’s great to have an advocate with you, but the advocate can also go through the same thing where they’re taking notes, where they get stuck on something.
Erin Galyean (10:41):
Maybe it’s bad news that came or, you know, next steps and you’re step behind. I think that reporting will allow you to go back and retrace your steps and go, okay, I missed this and totally didn’t hear Dr. Smith say this. Now I can follow up and ask this question. I love that. Yeah. And that’s really big. That was so great for my family. I also lived halfway across the country for my sister and my mom and my brother, so they could share them via text. And I could listen, my brother, my mom, my brother-in-law and my sister. We all have different perspectives. So that’s the other benefit. So I listened and I listened to the pharmaceutical Burnie, and I had questions. My brother he’s totally different than me. He has different analytical side to him. So we each would have questions that were different and that’s part of being a support team.
Erin Galyean (11:34):
So if you can get people on that support team that you can trust and that you are comfortable sharing that. So not the town gossip, not a good person to choose. They can really support you and help you along the way. And these reportings can help the communication to be very streamlined, very tight. And of course I can send going back and listening. You can listen six months later and say, you know what? I remember that doctor said something and now I don’t remember what it was. And I wanted to that’s important today. Right?
Adam Walker (12:04):
I love that. I love that. Okay. Any other strategies that you’d
Erin Galyean (12:08):
Like to share? And then one other thing that I talk about, so we’ve talked about the notebook organization is key. One thing that I came up with is having a morning routine. So I was not my sister’s primary caregiver. I was her patient advocate. That’s where I talk about patient advocacy. My mom and my sister’s husband were really her caregivers because they live locally. Right? You need someone local to take care of you every day. So I came up with this morning routine for caregivers and I think is really efficient and helps you to kind of stream on your day. So now it’s called the five hours. So every one, everyone starts in the norm make it easy. I like that kind of cheat sheet. It helps me. So number one is reflect. And actually, Adam, you just asked me about that earlier. What were your feelings?
Erin Galyean (12:55):
That’s why I think it’s so important. You need to get in touch with your feelings and not everyone is that way, but when you’re going through something difficult and it’s going to be for the patient too, by the way, because sometimes the patient is the caregiver. Sometimes they live on cells. They don’t have anyone around, or they’re not so sick. They don’t need someone every day, but they probably need supporting her in there. So this could be a variety of people that it would apply to. So reflect upon your feelings, your thoughts, write them down, do some journaling. However you feel like you’re comfortable, you can kind of switch it up. Number two is review. You want to review your calendar and your notes and maybe your recordings if you’ve been recording. So anything where you need to go back and take this process, by the way, could, can take you 30 minutes from beginning to end.
Erin Galyean (13:41):
So you’re thinking about your thoughts and your feelings during those down for maybe a few minutes, then you’re reviewing, that’s probably a more of a chunk, maybe 10 minutes of going through, oh, you know what? I had an appointment today with, you know, Dr. Smith at two, I need to make sure that I get there in time and that can pick the kids up from school, all of those things. So you’re not stressed. You know, that’s going to help you to decrease your stress. Number three is re-examine. So you want to, if you are taking care of someone else you want to, re-examine the patient’s care. Do you feel good about where it’s going? Are you on the right line? Do you need to ask for other meds? Do you need to ask the physician about something else, a refill, anything like that? So re-examine reevaluate is reevaluating, actually the support team.
Erin Galyean (14:27):
So when someone in the family or someone you love is sick, it doesn’t just affect the patient. Of course it affects the patient, but also affects their circle. And you may need to check on someone that’s all, maybe yourself too. So, you know, make sure that you are kind of assessing, is everyone okay? How can we help each other? Maybe I need some self-care myself. And then the last one is recharged. So before you begin that day, meditate, prayer, whatever is your thing, it gets exercise, yoga, go for a run, whatever it is. So you can get it out and get ready to take on the day and be a bad-ass that should set you up.
Adam Walker (15:08):
I love that. I kind of feel like that might be good advice for everybody, honestly,
Speaker 4 (15:13):
Not just, I mean, yeah, yeah. I mean
Adam Walker (15:17):
30 minutes of of planning, thoughtfulness and self-care I think can, can really go a long way for many of us in many situations. Yeah. I
Erin Galyean (15:24):
Did a similar routine in the morning and I’m not a caregiver right now, so. Right,
Adam Walker (15:28):
Right. Well, I love that. I love that. I love the methodology that you put behind it, the thought that you put behind it, and I’m going to have to check out your book because there are always times where we have opportunities to be an advocate and I love that. I love it. I love it. Great title. Great. A great cover,
Erin Galyean (15:45):
Fun. You know, I’m really the title I came up with kind of as a facetious because when you’re an advocate, I know I didn’t feel like a bad. Maybe some do. I certainly did not, but at the end I looked back and I was like, I was pretty bad for my sister. Like I was supporting her. I fought for her and not just me. It was my family. I wasn’t the only one advocating for her for a team. So I wrote this. There’s some things in the book I never got the chance to do. So my goal is to basically give this to you so you can be way more badass than I was ever. And then you have a leg up.
Adam Walker (16:21):
I love that. That’s what it’s about. And that’s really what this podcast is about. It’s about helping each other equipping and, and just and really trying to build the community. So well, Erin, this was so great. Thank you for taking the time to write that book. I can’t wait to check it out and thank you for your time on the show today.
Adam Walker (16:45):
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 on my blog. Adam J walker.com.
Adam Walker (17:08):
This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc.