Up next in 10
S2:E6 Patient Advocate - Amy Regenstreif
0 views
Jul 18, 2019
On this episode of The Little White Lie Caren and Amy talk about “How do you redirect your life in the face of serious illness? They cover the following topics: You Have the Power: You are the president of your own care and now you must elect a cabinet. I’m the president. My cabinet is not telling me what to do. They’re saying, this is what I think you might want to do. Feel It, Then Create It: First, you have to get over the shock. You have to go through whatever emotional process you need to do to get a grip on things. I gave myself the time to go crazy, but then I got down to business. I started to use a process to figure out, based on how I felt. You have to laugh. You don’t have to be funny, but you have to learn how to laugh. Have humor and develop a very thick skin because people say stupid things to you all the time. Amy Regenstreif is a patient advocate. She helps to guide cancer patients in a realistic way, how-to, in organizing their lives with them at the center of it all. My Direct Links, Programs & Equipment I use for my Shows & Promotion: BeLive: http://bit.ly/3p7E0DB Get Your Book In Front Of Thousands of Potential Buyers! https://bit.ly/2HJ38Qu Logitech HD Pro Webcam: https://amzn.to/362BuXP Wired Earbuds with Microphone: http://amzn.to/3p1pmOi Lavalier Lapel Microphone: http://amzn.to/3p9EFVo Blue Yeti USB Mic: https://amzn.to/395hExi ATR2100-USB Cardioid Dynamic Microphone: http://amzn.to/3qzEy5A LED Video Light Kit: http://amzn.to/360Qg1w Neewer Ring Light Kit: http://amzn.to/392bON2
View Video Transcript
0:00
How do you redirect your life in the face of serious illness
0:04
We talk about this and more with my special guest, patient advocate, Amy Regenstreif
0:09
on this episode of The Little White Lie. Welcome to The Little White Lie Show, a lifestyle show for super boomers and beyond
0:18
that will enhance your lifestyle, health, empowerment, and more. Hello, everyone. Karen Glasser here, and I am delighted that you are joining us today
0:28
We have a great show, a thought-provoking show for you today. And if you're here on replay, we're thrilled
0:36
Make sure that you comment in the comments below, and we will come back and comment right
0:41
back at you. If you're here live, even better, click that share button, share it out to your network
0:46
and bring your neighbors to the show. We know it's going to be a great one
0:52
My guest today is Amy Regenstreif. She is a patient advocate, and I'm laughing because I think I gave her that title
0:59
I'm not sure that she walks around calling herself that, but I've given her that title
1:03
That sounds good. It sounds good. And she helps guide cancer patients in a realistic how-to in organizing their life with them as the center of it all
1:12
Today, she makes a return visit to tackle the topic, how do you redirect your life in the face of serious illness
1:21
So welcome to the show. Amy how you doing today? I'm great how are you? I am doing great I'm just so happy that you're
1:30
joining us again. This is your second time back we had a very amazing conversation the first time
1:36
around to the point that I said to you Amy I need you to come back on the show. We've had so many
1:40
people that have viewed your show and have asked you know when are you coming back so I'm delighted
1:44
that you're here. So one of the things that I like to do at the very beginning of the show is to ask
1:49
my guests, what is your little white lie? So Amy, what is your little white lie
1:55
Well, not too many people know, you know how public I am about stuff, but I'm currently
1:59
61. My scans came out great. And now I'm having an identity crisis. I'm trying to figure out what
2:07
to do with myself. So this show is very appropriate today because I now I'm thinking, you know
2:14
oh shit, I'm okay. What do I do? I, so I'm going to use my own process
2:19
and try that I've done many times in these 17 years with cancer. So I'm going to use my own
2:26
process and, and see how I work through it and see what, my gosh, that's priceless. That's
2:31
priceless. Susan Jacob says, hi. And Joey Garrity says, hello. We've got people that are watching
2:37
live. Thank you for joining us. So, you know, the topic we're talking about is what happens when you
2:42
are hit with this, this serious illness. And I know that I can't believe that there's anybody
2:47
out there that is neither, either not had it hit them personally, or had somebody in their life
2:52
that has experienced a serious illness, whether it's cancer or something else
2:57
And how, what do you do? I mean, so let's just jump right in. Well, I think, yeah, I think first you have to get over the shock. I think, you know
3:05
you have to go whatever through whatever emotional process you need to do to get a grip on things
3:10
But then, you know, I give myself the time to go crazy. I literally give myself a time. Either I'm screaming in my car or or whatever I'm doing. But then I get down to business, you know, and I start to really use a process to figure out, you know, based on how I feel, because there's a continuum of how people feel
3:29
You know, how chronic are they? Are they functioning? Are they in the middle? Are they really not functioning? So it's a process. And throughout the whole process, I have a realistic view of, you know, trying to make my life go forward, whatever that is at the time
3:44
And I've had two or three careers in the 17 years of cancer in my advocacy
3:51
I've re reinvented myself, you know, a couple of times. So, you know, I'm not surprised that I'm I'm doing this again
3:59
I think I'd be doing it anyway, cancer or not. I'd be doing it anyway, just aging
4:05
So but, you know, cancer or any illness complicates it. So you have to have a very defined process in the craziness
4:13
I mean you talk about when you say to the patient that they are the president of their own care and now they must elect a cabinet to help them What does that mean exactly Well you are the president of your care It means that you should go educate yourself about
4:30
what's wrong with you and what are other people doing to feel better. But in your medical team
4:35
you want the respect of your medical team. I have an oncologist. I have a surgeon
4:43
I don't need it right now, but I've had pain management and a radiologist. I mean
4:47
I think there's I have a palliative care doctor, believe it or not, that manages everything that my sarcoma doctor does not
4:54
So I really do have a pretty big team. I have a dietician. I have this. I have that
5:00
So, you know, just organizing myself, it's a full time job to figure out, you know, what is the best I can feel today and that I get respected
5:10
You know, if I have a question, someone answers me and doesn't like you can suggest something to me to do
5:16
Like I'm the president. My cabinet is not telling me what to do. They're saying this is this is what I think you might want to do
5:24
Well, one of the things that I really appreciated about you, Amy, is that, I mean, you're really funny
5:31
You are really funny. You've got this dry sense of humor. You're able to take what most people, I would think you would agree, would be looking at as, you know, I don't know how to show up right now
5:42
And you, you tend to take the subject, make it understandable that somebody feels safe to talk with you and feels like they're being heard because you're listening
5:53
and you managed to put some humor into it all as well
5:58
Absolutely. I think it's very important to develop a thick skin. You have to have a sense of, hi, Joey
6:06
Joey, yeah. I think you have to have a very thick skin to do anything
6:11
any illness, cancer, and humor saves people. You have to laugh. You have to laugh
6:17
You don't have to be funny, but you have to learn how to laugh and have to take a situation
6:21
I also feel that if I look at my illness in that way, so do my doctors when I come to see them
6:30
They know that I am not a crazy patient, that I'm coming to see them. I mean, business
6:37
I have a sense of humor, I want to talk, I want to learn the science. So it is, you know
6:43
if you want to call it an energy that you bring to the table, if you would do it in your business
6:48
you would do it in your health care. So you just you just want to you just want to have humor and
6:54
develop a very thick skin because people say stupid things to you all the time. Yes, let's talk about
6:59
that. Let's talk about that. I was reading something that you you had put up you just moved recently
7:04
and you were out walking your dog, right? And your gentleman. Oh, yeah, a gentleman. Yeah, I'm out
7:11
Oh, you like that. I'm not walking my dog one day and you know, I'm 61
7:17
There are moments when I don't look 61 and I definitely don't look like I have cancer
7:22
So, and I don't, you know, 15 tumors everywhere. So I'm walking my dog one day and a gentleman, you know, is offering me lunch
7:31
You know, a senior sitter. Hi, Teddy. Hi, Teddy. A gentleman is offering me lunch while I'm walking my dog and wants to take me out
7:39
So I said to him, I said, I don't date. I said, I just don't date. And he goes, why? He goes, what do you have cancer? And I said
7:46
yeah, I do. I do. I have cancer. And that's why I don't date. So he just was so flustered and he
7:52
couldn't apologize enough. And I, but I said, you know, it's okay. I said, I'm okay with it
7:58
I said, I didn't say it to upset you or, you know, be rude. I said, but I have cancer and
8:04
that's why I don't date. So I just, you know, and he got, and then he says, well, can we still do
8:09
lunch but we'll go Dutch that's what he said to me he goes we can can we still do lunch or coffee
8:15
but we'll pay for ourselves that's that being funny oh my god I was like oh no that I said have
8:22
a good day and I walked away I said oh my gosh yeah that's kind of funny yeah there's things
8:28
that people say that also hurt people so for example um you know uh the most recent thing
8:36
and I won't mention any names, so, you know, said to a family member, said to a cancer survivor
8:41
I feel like you already gone So people say really really stupid things to other people Do you think it because they just don know what to say or they they foolish or they feel that saying anything is better than nothing
8:56
i mean why do people all of those all of those all of those it's the same thing when someone
9:01
passes away people don't know what to say or do you know so i think that it's really important i
9:07
feel like as the patient, I need to teach people what to say or do. So I'm not offended if I get a
9:15
really stupid comment anymore. Maybe I was in the beginning. I'm not offended anymore. I feel like
9:21
I will tell them gently that what they're saying is not okay. So I'm all about teaching
9:28
cancer patients or any kind of patients what to say to get through the day and how to preserve
9:35
of your spirit and feel good about what's going on, even if it's not good what's going on
9:41
As Joey said, they don't know what to say. It's true. They just don't know what to say
9:46
No, you mentioned that you are, you know, your little white lie was you really don't know what
9:53
you're going to do next and what you're going to be. But I do know that you just recently signed
9:57
up for an improv class, right? Yes, I did. I'm the oldest person in the class. And I know that no one
10:04
else in there has cancer. And so for example, the kind of crazy shit I do is I call these places up
10:09
and I, you know, any place and I'll say, you know, do you have a senior rate or a cancer rate
10:15
No, I said to them, I said, I'm 61. I have stage four cancer and I really want to do this. Do you
10:21
have like a medical rate for me? So they said, yes. They said, yes. All you have to do is ask
10:27
right? So yeah. So that's the other thing I teach people, you know, not to take advantage
10:31
but to ask if there's a question in your head that you think you should be saying and you're
10:37
not saying it, it's a mistake, you should say it. So that's the other thing that I do quite often
10:44
Well, and you do run a couple of groups on Facebook and one of them I'm going to put up
10:48
here is the four questions of extreme cancer survivorship. And this is a group where basically
10:54
you talk about there are four questions, right? You want to briefly just go through that, what
10:59
the four questions are and what people that might be experiencing cancer or need some support
11:03
they might want to check the group out and see if you're a good fit for them and come out
11:08
Our questions are basically, it's based on a survivorship program that I wrote
11:12
and there's four chapters to actually really any illness. There's the psychological, how do you
11:21
do the inside of your head. And then there's the psychosocial issue. How do you build a world
11:29
around you of friends and family for support? Then there's the money and paperwork issue
11:35
And then of course, there's the medical issue, doctors, treatment. So those are the four
11:39
categories. And based on that, we talk about, you know, questions, it's kind of really based
11:45
on middle of the night texts I get and questions in the middle of the night of people that I've
11:49
known for many years, some of them are gone. Just about, you know, Amy, are you sleeping? I think
11:56
I'm dying. Amy, are you this? I don't know what to eat. Amy, should I call? You know, this is going
12:01
on. How do you deal with this? Or I just want to talk to you. I can't talk to my family because
12:07
they're so sad. So it's a lot of based on questions that I've gotten. I call them, you know, early
12:14
morning or a late night text. Are you sleeping? Are you awake? And I get a lot of those. I'm sure
12:20
you do. I asked you what your one of your books, your favorite books were. And you told me about
12:25
this book, When Breath Becomes Air. You said it's probably one of the best books that has been
12:29
written. It is. It is. Tell us a little bit about the author, because I didn't know about it until
12:34
we talked about before the show. Tell us a little bit about the author. Well, he's a doctor and he
12:39
passed away from cancer. And it's about his journey as a medical person, as a family man
12:45
as a father. And it's just so unbelievably, realistically written. It's just a must read
12:53
if you're going through any kind of illness, because it's his journey, not, but not just how
12:59
to smell the roses, but how to smell the roses deeply, without, without any woo woo stuff. And
13:06
And you know taking you know without all the woo woo like if you would have taken enough vitamin A he still be alive You know none of the crazy stuff that people talk about Right right
13:17
It's unbelievable. I was, I'm intrigued by the book. What a lot of people may not know, and I'm a very private person
13:25
My husband has been diagnosed with cancer, and we've been going through the whole process
13:30
And, Amy, you've been very supportive and very helpful to me just as somebody to be able to talk to
13:34
And so I actually went and purchased the book and we put it up on in the Boomer Lifestyle store
13:41
So we hope that you go check it out there, theboomerlifestyle.com. You can go pick up the book there
13:46
It's called When Breath Becomes Air and it's in the book section
13:51
And I would encourage you to go check it out. I'm looking here that we've got people that are survivors that are here
13:58
Oh, I see. I see. Teddy. Yeah. Yeah. And she's going to get the book
14:04
Teddy, I can't wait to hear what you say about the book. Let us know what you have about the book
14:09
Kat's going to get the book. Joey, maybe we should do a book club on it because it's on its way
14:18
I just, you know, there are a lot of resources out there, but that doesn't mean that they're
14:22
all good resources. So I trust you when I say to you, what would you suggest as a something, as a new book
14:29
So thank you for sharing that. Any last thoughts that you want to share about this whole process and, you know, about the question, basically, you know, how do you reject your life
14:40
I saw a TED Talk. We were talking about it. It's about learning resilience
14:45
And I never looked at resilience as something that was being learned. I just thought sometimes either you have it or you don't
14:52
But I should know that being around so many people like myself in all these years, everything is a learning process and regular life doesn't stop
14:59
So we have to learn resilience with everything else, whatever else comes along the way
15:04
We never stop learning, right? We never stop learning because when we stop learning, that's the end
15:11
And that's how I believe. I believe that we are continually growing and we're continually learning
15:16
And that's part of our journey, whether it's in sickness or health, that is part of our journey
15:20
Amy, thank you. Thank you. Thank you. I know that you just got back from your scans and your appointments yesterday
15:27
And here you are on the show again. I am just inspired by you
15:32
And I just want to thank you for what you do out in the patient world
15:37
I also want to just let people know that if they want to also get in touch with you, they can follow you on Twitter at Amy Advocate LMS
15:48
So do check it out. We follow each other and we have a lot of posts
15:52
We'll be putting this show up there on the Twitter as well. Thank you again for joining us
15:57
I'm going to drop you into the green room as I get ready to close the show and I will talk to you afterwards
16:03
OK, thank you. Thanks. Bye. All right. So it's time for the super boomer moment
16:13
And this is where I talk about that piece of the show where it touched my heart
16:18
And I knew that whole show was going to touch my heart. Amy is a very special woman
16:22
But I, you know, as I said before, I don't think that there is anybody out there that has not been touched in one way or another
16:29
They're just they're not. We have a grandparent or a parent or best friend or a child, God forbid, or somebody in our social network, somebody that we or ourselves
16:40
somebody that has suffered from or is suffering from a serious illness in which the prognosis is not good
16:48
and I think it just gives us all some food for thought
16:52
and a reminder that as a patient, we are responsible for ourselves
16:57
We are responsible for the care ultimately that we can get and to get that board of directors
17:02
those advisors around us, I think that it's just so important to put that out there
17:06
and I hope that you go out and you read that book as well and you can pick it up, as I said, on the Boomer Lifestyle
17:12
I'm gonna roll that again. I just have to scroll and here it is
17:18
I want to thank you. You all have a choice as to where you spend your time
17:22
You decided to spend your time with us today. I want to thank you and I'd like to invite you to join us next week on the next episode of The Little White Lie
17:32
Have a great day, everyone. Bye bye
#Health Conditions
#Mental Health