Believe Big Podcast

37- Believe Big Patient Advocates - Patty Buddemeyer

December 27, 2022 Ivelisse Page & Patty Buddemeyer Season 1 Episode 37
Believe Big Podcast
37- Believe Big Patient Advocates - Patty Buddemeyer
Show Notes Transcript Chapter Markers

Today, I am chatting with  Believe Big's Lead Patient Advocate, Patty Buddemeyer.  Patty has been a part of the Believe Big family since the beginning and she has worked with hundreds of patients who reach out in search of information and answers along their cancer journeys.

Join me as Patty and I cover a lot of territory for patients and caregivers, alike.  We will talk about the importance of being your own "health ambassador" and why having a supportive oncologist is key to a cancer patient's care team.  Patty will also share some sensible things loved ones can do to help and support a family member who is on a cancer journey.

Connect with Patty at Believe Big:
https://www.believebig.org/

Suggested Resource Links:

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Ivelisse Page:

Welcome to today's episode on the Believe Big podcast. My name is Ivelisse Page and it's an honor to spend this time with you. Today, you'll hear from my dear friend and colleague Patty, on the importance of being your own advocate. Patty Buddemeyer is our incredible Believe Big patient advocate team leader who has such a heart for the patients and families that reach out to us each day. Patty has been with Believe Big since the very beginning. I am so grateful to be able to work with her each day. Patty, welcome to the show.

Patty Buddemeyer:

Thank you Ivelisse. Nice to be here.

Ivelisse Page:

We always like to start our show, as you know, with our guest's favorite health tip, and I love that you're our guest today. So what is your favorite health tip?

Patty Buddemeyer:

It's one that I feel like I've learned recently in the last two years that Vitamin D is really, I mean, I knew it was important, but I mean to the levels that the conventional world think are important are not nearly as high as we really should be having are vitamin D levels be to stay healthy.

Ivelisse Page:

Yeah, a hundred percent. So many of us are deficient in vitamin D and don't even know it. And I know, especially even with colon cancer, It's one of the indicators, red flags, that you really wanna keep those at a normal range. And what conventional medicine is normal range, is not what our functional medicine doctors think is normal. I'm glad that you mentioned that tip.

Patty Buddemeyer:

Yeah, I actually had to beg my general practitioner to even put vitamin D on my blood work. And she's like, well, you'll have to pay for it. And I'm like, I don't care, I want to know.

Ivelisse Page:

See, you're being your own advocate, even for yourself. I love it. Can you share with us briefly what drew you to Believe Big?

Patty Buddemeyer:

Yes. I would love to. Actually Ivelisse when I was led to Believe Big, by Jackie and I read your story, that was just an amazing story for me to read. I had recently lost my brother and a good friend, and I just, I literally think I looked at it and I was like, wow, that's a miracle.

Ivelisse Page:

We're so grateful that you joined our team. You bring so much life to Believe Big and patients just have so many incredible things to say about you and how you really have a huge heart for them. So thank you. Knowing what you know now, what would you have done differently to help your brother?

Patty Buddemeyer:

I would've definitely told him about mistletoe. I would've told him he needed to change his diet and just gotten him to see the right people and, could-a, would-a, should-a. Wish we could have. Didn't know you then. Didn't know about Believe big hadn't started yet. Actually started. He died right before you guys started, in June of 2011.

Ivelisse Page:

Yeah. I feel like you're paying it forward now on his behalf to so many who have come after him with the same diagnosis, and you've helped hundreds and hundreds of patients throughout the years, so I know that your brother would be so pleased to hear how you are giving back, so that other families don't experience what your family has.

Patty Buddemeyer:

Yep, thanks.

Ivelisse Page:

What was the most difficult aspect about being a part of his care team?

Patty Buddemeyer:

The actual hardest part was when he was going through his different stages and the anger stage. That was a very emotional time and luckily it didn't last that long, but it was a really unfortunate time and it was hard for him, but it was hard to hear like some of the things that he was saying that he didn't really mean, You can take things out on the ones you love. That was a hard time.

Ivelisse Page:

Yeah, and I think that's why you're so understanding of who you're speaking to on the other side. And when you speak to caregivers too, you're able to speak from a point of reference of knowing what it felt like, knowing what it's like to help someone, even within your own family that had cancer. And what would you say is important for a patient or a family member? Why is it important for them to be their own advocate?

Patty Buddemeyer:

It's so important. When you're diagnosed and you have so many things coming your way, and that's overwhelming. First of all, I think it's hard sometimes for people to be their own advocate, but I think you have to really trust in your gut intuition on a lot of it. And, don't let people sway you from how you feel, and that includes the doctors. One of the things that I always loved about your doctor, Dr. Diaz, that I always remember that he was interviewed on a local television station. And he said I guess it was just in response to about why he's doing this with mistletoe therapy or whatever, and he says, as doctors we can't be so arrogant to think that we know it all because people are still dying. And that was such a humble thing for him to say, and I just loved it because I've been in the position where I've been sitting there and actually felt bullied at the mention of mistletoe to the particular doctor that we were seeing, my dad was seeing at the time.

Ivelisse Page:

Yeah. And I know that you dealt with your dad's cancer as well. So what is your best advice for someone who wants to pursue a more natural approach, that includes mistletoe therapy and they're getting pushback from their conventional oncologist?

Patty Buddemeyer:

You have to be strong. And I will tell you that one of the things that if you really arm yourself with knowledge on it, the old"knowledge is power". But, I mean, here I was being around this for so long and I still got intimidated. And it wasn't until I went, I didn't say anything at first, but when I went back, I took our questions to ask the oncologist. And that really helps you feel like you're coming from a place of power. Just from the point of you forget what to ask and when you have those questions in front of you, I mean, I just picked and chose the questions that I wanted to ask and as I was asking, they stopped me and he's like, are you a nurse? I'm like, I just were laughing going I'm not a nurse. But, that was really helpful for one to get answers to the questions that we wanted. And to be knowledgeable enough to ask. And then, when I did bring up mistletoe, the light bulb went off in my head going, oh my goodness, cuz of his reaction. It was such a strong reaction to me just mentioning it that I was so surprised. but then I was also like, oh my goodness, this is why so many people. Might start and come and talk to us, but then they don't come back because they probably had this situation. I finally just put my hand up to the doctor and said, you need to stop. You need to stop because you don't know who you're talking to.

Ivelisse Page:

Good for you.

Patty Buddemeyer:

I said, if my dad's gonna be doing chemo and radiation, he sure as heck is gonna be doing mistletoe. And he says, oh, if it's a difference between, doing chemo radiation or not, then that's ok. I was so mad.

Ivelisse Page:

Oh my goodness. See you spoke up, you were his advocate and I think what you said is so important. Knowledge is power, and what we're gonna put in the show notes, the Questions to Ask Oncologists that Patty is sharing. We'll also put in the show notes, the frequently asked questions about mistletoe and even the link to our podcast that we recently did with Dr. Steven Johnson about mistletoe therapy. He's an MD and he answers many questions that many physicians and even individuals ask about mistletoe. And so that might be a great resource to bring along and to share, that doctors may or may not listen to. But what if indeed they said, my way or the highway, what would you have done?

Patty Buddemeyer:

I would say, I think I need to get a second opinion.

Ivelisse Page:

Very good.

Patty Buddemeyer:

I think that honestly, it's, it's hard. And I have had patients say to me, from all over the country, do you know an oncologist that you could recommend that's open. And to all you listeners out there, if you know an oncologist, let us know who they are and where they are so that we can share that with other patients. But, yeah, you have to kind continue you know, ask friends, ask, just reach out and try to go to somebody else and find somebody that's a little bit more open where they respect the patient as much as you respect them. I think that, sadly, that needs to be the way it is.

Ivelisse Page:

It's a partnership. We should be the CEO of our own health, not the other way around. It's not a dictatorship, it's a partnership to say, this is my life and I'm making these decisions, factoring many things into it. And so they need to be respectful of your choices as well. And yes, we need to listen to the wisdom of our doctors, but we also need to listen to our bodies enough to know what's best for us and only we know that. And so that's really great advice. I've also heard from individuals, even within the same hospital, there could be someone who's open and then in the next door over there's someone who's not. So it's not by hospital. What you said about asking friends for referrals for your type of cancer is really important because you may find that one person in a hospital where someone may have had a different experience. So ask friends. It's the best way to get a referral on a great integrative oncologist. So going to what we do at Believe Big, what is the process when a patient reaches out to us by phone and then also through our website?

Patty Buddemeyer:

There's two different ways either by calling us or you can go onto our website and I think pretty much on every page of all of our resources, you can click on and just fill out your name and information and it'll email us. And at that point, that's actually probably the easiest way for us to connect first. And if you want a phone call, then we can schedule a phone call. We try to keep'em thirty minute phone calls because, there's lots of people requesting, so there's only four of us. Small but mighty. We do the best that we can to get back to everyone. We try to get back to you within 24 to 48 hours.

Ivelisse Page:

And you guys do such a great job with that. And there's a lot of resources on our website, and I'm really excited soon where we're gonna be coming out with a video series on, I Have Cancer Now, What? Where individuals can watch, no matter what time of day they find us, or what country they're from, that they can get a lot of the information that you guys share. And so hopefully we're hoping that information will allow them to, get the knowledge on missile tone, other aspects of their care that they need, and then if they have specific questions, they can reach out to our patient advocate team. So that is excellent. So through email is the easiest way for you all to distribute the contacts that are coming through. And so I know that our advocates you know, we're very clear that we are not practitioners and we don't offer medical advice. And so what is your role in helping the patients that reach out to us?

Patty Buddemeyer:

Okay. the number one thing that I think we're all really good at is that we're really good listeners, so we listen. And sometimes that might be the first time, someone's been listened to. So we listen, we refer. After we hear their story, we, then just decide what things that they need or they're looking for or that we think that would help them. So we would refer them to a mistletoe doctor. We first usually wanna educate them on mistletoe, so we'd send'em the podcast and the webinar that we have, the frequently asked questions, we would also refer them to Remission Nutrition, our go-to oncology nutritionist. There's the Hypothermia Cancer Institute. So even though we do focus on the mistletoe and the diet, we want to be as abreast of as much as we can to be able to help them. So for instance, the Hyperthermia Cancer Institute out in Santa Monica, California, that's another avenue that can really help some people. Just different modalities and then maybe they need a doctor that's really focused on the metabolic approach. We also provide BELIEVE mugs to help encourage them during this time. We have our wellness grants that help to offset the cost of a consultation with a mistletoe doctor or with the nutritionist. And then of course we provide spiritual support and we always ask at the end of a phone call if we're speaking with someone, if we can say a prayer for them, if they're okay with that. And then we pray for them right then and there and that's a pretty cool thing. It's just very humbling. It's an honor for us to talk to the patient. And it's also just something special.

Ivelisse Page:

Yeah. You guys are good listeners, and to hear the stories, especially for me when I'm hearing that they're little kids and infants that are getting cancer, I think that just really tears at our hearts when we hear the young ones that are getting sick. I love that our team does pray for those who would like prayer, because I think that just brings peace into this storm of anxiety and all the emotions that individuals are dealing with. So it's very special and different of what we do at Believe Big.

Patty Buddemeyer:

Yeah.

Ivelisse Page:

And so I also wanted to find out from you, we have individuals that come that can't afford care. As we know, all of these treatments, most of the integrative therapies that you're talking about are typically not covered by insurance. What are some ways that individuals that you speak to, what are some suggestions that you help them with in order to be able to afford the complimentary therapies?

Patty Buddemeyer:

I mean, aside from the grants, we suggest that they may consider a GoFundMe page.

Ivelisse Page:

Give Send Go I think is the other one.

Patty Buddemeyer:

It's just beyond what they're comfortable with. And I say, just think, there's a friend or a family member that could tell your story for you. It doesn't have to be you asking. I believe that there are so many friends and family members out there that just don't know what to do to help. And they wanna help. And even if it's five or$10, something that could go towards helping that person get the treatment that they want. I think people are more than happy to give and support.

Ivelisse Page:

Yeah. And I think especially people who are not in the same town. If you're a family member and you live across the country, that's a really tangible way to help and people wanna help. I remember when I was sick, I always was afraid to ask people for help. And I had my sister-in-law who told me that when you don't allow people to help, you're robbing them of the blessing. It really was a wake up call for me to say, yeah, I need to be accepting of it and be humble enough to accept help. I was so used to being the one giving help. That's great advice, Patty. You help patients to discover the need of their care team. So who's important to include? I know you mentioned Remission Nutrition. Who are those key pieces that people should consider having on their team?

Patty Buddemeyer:

Obviously they want a good oncologist that they feel is partnering with them in this journey. The right nutritionist and the reason that we do use Remission Nutrition is because they truly are oncology nutritionist. That's their focus every day. And it's a big difference from a hospital nutritionist, and not putting them down, they just aren't trained in oncology nutrition. That's one of the hardest things out there because you'll hear so many different things that you know, oh, this person did this and that person did that, and do we do juicing or do we do that? Finding out specifically what you need is what they do. So that's really good. Some people really need someone to talk to. So finding somebody who's maybe a cancer support therapist. Just surrounding yourself with the people that are going to support you through the journey.

Ivelisse Page:

Yeah. And so you mentioned it with the setting up the GoFundMe page and other things. What are some things that people who are listening who have a loved one, or someone they know with cancer, what are some tangible things they can do to help?

Patty Buddemeyer:

It's so important to support them, to listen to what they need, ask them what they need, what can they do for them. Probably from that standpoint, you're gonna get those people that go, I'm fine, you don't need to do anything. Sometimes just trying to take their mind off it. Do something normal, play games, do things that are fun, make them laugh. Laughing as you always say is one of the best things that we can do, laugh. Just to stay positive and help them. And if they want to do more of the non-conventional then support them. Don't fight them. They don't need to be stressed out and they don't need to have people fighting against what their wishes are.

Ivelisse Page:

That's really good advice. I also had individuals who helped with rides, helped with laundry, I mean simple basic household task cuz Jimmy was trying to do so much. I've heard of people who buy organic produce for patients so that they can do the juicing and the smoothies that the oncology nutrition recommends So those are some tangible things that people can do to help others. And also circling back to what you mentioned about the difference between the nutritionist at a hospital versus the Remission Nutritionists that we work with, one of the things that they mentioned is that hospitals are focused on calories. Whereas their focus on nutrients. What can they do to make the body heal and be better? Where hospitals typically just are focused on how many calories they're intaking and how many they're expelling. So it's a really different approach on how to really address the person that's in front of them.

Patty Buddemeyer:

Yeah. And there's nothing worse when the doctors go, eat whatever you want. Sometimes it's the caregiver that wants them to be eating better and the person's like, well, the doctor said I could eat whatever I wanted.

Ivelisse Page:

It's true, they're training in medical school, not that they don't mean well, and they really wouldn't do what they are doing if they didn't care, but they don't have that additional training. And so sometimes they'll say not to do something because they aren't sure how it's gonna interact, or they believe it could interfere with the treatments that they're gonna be offering. I was told, pretty much until up to three years ago, they didn't even have a nutrition course in medical schools for the doctors. Nurses know more about nutrition than medical doctors do or did at that point. Things are slowly changing, so it's really even more important to be your own advocate and to make sure that you are doing what's best for yourself and individualizing your care and not letting it be standardized by medicine today.

Patty Buddemeyer:

There is hope.

Ivelisse Page:

There is hope. Yes, there is hope. Knowing what you know and the hundreds of patients that you have spoken to, what would you wish every patient would do?

Patty Buddemeyer:

Just truly, be strong and you really do need to be your own advocate and just be positive. I think that the body follows the mind. So just try to be positive. Open up the Bible or get a book. There's a little tiny book that's called God's Promises and it's all the promises out of the Bible. It's just a little tiny book that a friend of mine share with me one time and it's wonderful. Yeah, I guess that's it, just was my one thing, which went into two.

Ivelisse Page:

I love those. Yeah, it's so true. I think that all these things that you've shared today on the show is so important for people to focus in on, hopefully at the beginning of their care and not trying to backtrack once things have gotten rolling. Is there anything that I haven't asked you that you feel would be important for someone who's listening to know?

Patty Buddemeyer:

I guess just be open. We actually just lost a best friend yesterday and that person wouldn't listen to anything I had to say.

Ivelisse Page:

Oh,

Patty Buddemeyer:

Wasn't open at all. So just to be open. There are other things out there and yes, the conventional. Do whatever you wanna do, but I just can't understand sometimes why wouldn't you do whatever you could do? Why wouldn't you put all these things into your basket that you could, possibly help cure yourself?

Ivelisse Page:

I agree. I feel like it's important not to leave any stone unturned, and I think that fear plays a huge part and, we really need to trust ourselves, trust our gut to know what's right for us and be open. I love that. It's so true. Be curious, ask questions. So I think that all those things are important along this journey, along with the gratitude and the prayers and everything else that you said that helps your body to heal so. Well, thank you Patty, so much for taking time to speak with us today and for all that you do for the patients every day at Believe Big. We're so grateful for you.

Patty Buddemeyer:

Thank you. I appreciate it, and happy to do it.

Ivelisse Page:

If you enjoyed this episode and you'd like to help support our podcast, please subscribe and share it with others. Be sure to visit believebig.org to access to show notes and discover our bonus content. Thanks again and keep believing big!

What is your favorite health tip?
What drew you to Believe Big?
Knowing what you know now, what would you have done differently to help your brother?
What was the most difficult part of being on your dad's care team
Why is it important for a patient or family member to be their own advocate?
What is your best advice for someone who wants to pursue a more natural approach to their treatment?
What would you have done if your dad's oncologist gave you an ultimatum regarding his treatment?
What is the process when a patient reaches out to Believe Big?
What is your role as advocates to the patients who reach out to Believe Big?
What are some suggestions you have for patients who cannot afford integrative therapies?
Who should be on a patient's care team?
What are some tangible things a loved one can do to help a cancer patient?
What is your wish for every patient to do, given what your knowledge?
Final comments from Patty