Unknown 0:00 Hello! And welcome to VoxFem global health minute, and I'm your host, Dr. Annette D'Armata. For those of you who don't know, our global health minute that we started this year is is about global health but it's not a minute we just like to mess with you like that. When we get you in with the minute and then we keep you for like 40 minutes, an hour with really amazing people. And if you don't know about VoxFem, we, our mission and we chose to accept it is that we wanted to find and feature at least one singer songwriter composer filmmaker visual artists and change maker from every nation, and occupied territory on Earth. So we're going to be busy for a little while. And we, there are already just amazing women that are on our website so go to Voxfem.org VOXF dot o RG. We're also on all the social media, but definitely you can go through just spend time going through all of these amazing women on the website. Our global health minute. I'm really excited to be featuring women who are just, they're all changemakers and so that's really, that's really part of my focus how they're doing something amazing in health and changing our health for the better in the, in the process of of healing and and talking about healing, I think it's very important. We have foxfield think it's very important also to to acknowledge recognize the original caretakers of the land where we are broadcasting we broadcast from many places but primarily from San Antonio, Texas, and so we want to acknowledge the esto na, the homie crudo Cova wheelchair nation, and also that this is the homeland of the Chicano Chicano Chicano peoples and we are very grateful that we are here. You will have heard this this from my guest today, you will have heard me use this disclaimer before my disclaimer is that I have no objectivity whatsoever when it comes to my next guest because my next guest, Dr. Amy now is a friend of mine for the last 15 years. She is. She was also a classmate of mine, and. And I'm going to go ahead and read her official bio and then I'm going to tell you a little bit about how, why she's a hero of mine, okay now don't use that lightly. Okay. So Dr. Aimee Knauff lives in western Pennsylvania. These days, although we met in Arizona. With her loving husband and her three adventurous children. She's been on many service trips to Haiti and other countries where she enjoyed serving the people she encountered and learning life lessons from them. She earned a bachelor's degree from Gannon University in Erie, Pennsylvania, followed by a naturopathic doctor and from Southwest, College of naturopathic medicine in Tempe, Arizona. She had a solo medical practice in Vermont for several years, all while struggling with recurrent brain cancer. Dr now has been through four brain surgeries radiation and chemotherapy. She currently has a fist tumor. And after undergoing a year of treatment has decided that quality of life is more important than quantity. God has blessed her with supportive family and friends for whom she is grateful. Dr Neff practices mindfulness each day, and says that she's thankful to God for the miracle of breath. The miracle of life, and the miracle of death alive. Now I'm gonna say my part of this. I, I knew Amy and you should this could be shocking to you but I know she'll appreciate this. I knew Amy five brain tumors and three kids ago. And so I think actually we met after the first we're gonna, I'm gonna make sure that she has my chronology right but we met after she had entered entered medical school before me I had a brain tumor, and then re entered with my class and, honestly, it was one of those things where and to this day. The way I was describing is one of those people I don't want to. I don't want to ascribe superhuman traits to people I think it's dehumanizing, as well as when you talk when you, Unknown 4:54 when you say somebody is less than I think sometimes when you give superhuman traits that can be to humanize but I do want to say this, I think, Amy is one of those people in life, that can teach us and teachers, how do you face extraordinary circumstances whether the ones you choose for yourself, or the ones that life throws at you with with extraordinary grace, and, and, and. And then in that process remain being a normal person. I think that's, that is such a beautiful lesson like how do you have this normal life and normal human relationships with such extraordinary challenges I think at this time. I can't think of anybody better to teach us than that, then Amy now, at this moment so that's why I wanted to have her on the other reason is that she has written a book she's written a memoir, and that book is Beloved, and brain cancer living each moment, as if it were your last. So please welcome Dr. Amy now. This is virtual multiply by. million visits sleepless stadium. I want to say this to you asked me and I want to I want to be sure that I'm an hour this. So Amy also wanted me say to the audience. At the beginning of this that because of the brain cancer to please have some patients that sometimes they're one of the ways that it affects you, Amy is there's sometimes difficulty finding words. So it may take a little longer, but you get there. And so. Okay, Unknown 6:35 well thank you so much. I really appreciate being on your show, knowing you. It's been an amazing journey we've had together, isn't it. Yeah, so my book is, is sort of the story of my life, which, you know, everyone that knows me, you know, they, they were asking I had a couple people write something to put on the back of the book and they were like well Do I need to read the book or as in, if you know me, you know, you know what my book is about Unknown 7:13 sort of started off by talking about this time of great loss I mean this is a time where people are really struggling to find and keep meaning in a very, you know more isolated ways, in some way, and everything is different. And so, I think, you know what, what do you bring in your, in your daily life of living with living with brain cancer now for 15 years and 15 years 16 years 16 years 16 years of every single day. That's a lot of days of facing and living with like what you said living each moment as, as if it were your last. So, I guess we alluded to it in the in the bio but I want to ask you this. One of the other things I love about naming folks is that one of the things that she, she was just known for his, I don't know, I call it the great concentrator of things, because she guess she could just take something very complex and condense it into just one hilarious sentence or one phrase. That was the size, you're like oh my god yes and just just to learn, or even if it wasn't hilarious but I wanted to ask you, condenser. And just a few words. What would you say is, where are you at right now, in, in your process of with your process with. Where are you at beloved with, with a brain camp. Well, Unknown 8:51 so, Unknown 8:52 I still have two or five, I went through a year plus of chemo and one chemo I, I had finished the cycles and my lungs couldn't handle anymore. And I'm grateful that I did that chemo because it gave me another year and Unknown 9:10 a half of functioning well, Unknown 9:13 because before that. a year ago. Last March, 2018, I actually met with hospice, because my, I just, I wasn't functioning well. And then the next day I actually got an MRI and went to my neuro neuro neuro oncologist, and she said that they had just come across it, a new protocol that would shrink the tumor and it helped me restore function because you know as the tumor grows. And so I did that and it really did it shrunk the tumor I felt so much better I found Morgan, almost which means normal plus for brain surgeries, but then she gave me a chemo pill that was more geared towards a colon cancer metastatic breast cancer. It has like real symptoms, and I just I felt terrible on it. And at that point I was like, you know, I don't want just quality of life. You know, they could keep me alive forever if I really wanted, but I want quality, I have three children who are adventurous, to say the least. And, you know, just to be able to be with them and to invest in them and to pour in everything that I've got. Before you know before I get too out there. I feel like I'm losing, especially working memory as my short term memory is decreasing, because of the tumor that I have. Unknown 11:08 And then in addition to at Unknown 11:09 all. I also got diagnosed with hybrid and regional cancer, because for the year that I had my, my chemo, I wasn't cycling, and then I started cycling. So I was like okay, but I kept bleeding, on and off I'm not that love. And, you know, I actually went through menopause, while I was in having my year of chemo, but I didn't know that. And you know, I think we know as doctors, if you have a woman who's bleeding. That's a big deal, right, know that I was a woman, right. So, when I got, I got introduced to a wonderful gynecologist and, and he took a sample with centimeter hyperplasia and he took my knee to the DNC and that's what came back is hydrate endometrial cancer was like I'm so sorry I have to tell you this, and I was like, I'm okay with it and he's like what do you mean you're okay with it is like, Unknown 12:12 you know, Unknown 12:14 I don't and I, my husband, we kind of had a joke. all these years, Unknown 12:18 if I had cancer, anywhere else, anywhere else, I would be so happy to have them cut out, and my brain would still work, you know. And so the fact that I said, you've probably never given anyone their six cancer diagnosis, he's like well I guess you're kind of right. And I'd like to have that taken out. I'm happy that works. Like you get your cancer out, and I don't have to cycle anymore. I think we both win, but at the same time. At the same time, you know, I had a port in for my chemo, you know, and all that stuff and I said, I, other than having you take it out I don't, I don't want any more treatment. So they even took my cord out in the surgery and, you know, and. And I felt really good about the decision that I have made. So Unknown 13:22 by the time you're done you almost want to say congratulations, like, Unknown 13:28 I was like, Oh, my uterus. We'll take that out. All right. Harrison new brain cancer, like I said, anywhere in my body. That was a good place for us to have it. Unknown 13:42 One of the things that people say, oh, there's so many things I want to ask you, and I'm just gonna try to ask them. Okay. And by the way we have no script and we decided we were gonna have just a conversation, like we would normally because I think the things that I want to ask and things that that people just are curious about. And they feel like they can they tippy toe around. Right. and for Unknown 14:05 me I'm honest brutally honest exactly that's what I love about. Unknown 14:10 And so, I think one of the things that people want to know, loved ones of people who have a diagnosis. They always say I don't know what to say. And so, you know, people do kind of drop off a lot of times when you most need someone to disappear because they are. They feel awkward, they don't know what to say and really they don't want to hurt you. They don't want to hurt your feelings or they think somehow they're going to say something that's going to send you into like a mental health crisis like they don't say that but that's kind of what they think. So are the things I wanted to ask you is, as somebody who has lived with cancer or not and maybe even thinking back to like in the, in the earlier times because now you you know God now your life, your life and riding on this roller coaster for so long, you know, not that doesn't that makes it easier I'm not making light of it at all but I think the initial diagnosis is much more shocking. And then when you get to your sixth one with it and make sure you're like that. The first one. What, are there any words that people should have waited, we're talking to people are there any pitfalls like, you know, don't say to somebody, is there the other, or is it okay that, you know, people think they should talk about like How are the kids that they avoid the elephant in the living room, like what what do you say to people, how do they talk to somebody who's gotten a diagnosis. You know, Unknown 15:38 I think they're. The first thing I'm going to say is, we haven't I went to. There's a gathering every year in Vermont for patient cancer patients, all kinds of cancer patients and it's free to go it's, you know, and they bring in all these speakers. And one of the speakers said that cancer is is not a death sentence. Always I mean, for my cancer. It is a death sentence in a way, but he said it's more like a chronic illness. And how would you talk to someone with a chronic illness, you know that's. And I thought, I can do with chronic illness, that makes sense to me, you know, just like hypertension or diabetes or whatever. Cancer is a diagnosis of long term Unknown 16:33 illness, Unknown 16:34 but you don't talk to people like they're crazy when they have diabetes. So I think that's the first thing to realize, And the second is Unknown 16:48 from Unknown 16:49 me, recent times, too. Unknown 16:51 I have. Unknown 16:52 I've had weekly meetings with this priest that I absolutely love I met him in college, 20 years ago. And he has continued to be in our lives, throughout this whole time, and we have been going over we've been reading books, and I'm now in my fourth to con book, and I think Unknown 17:12 as Unknown 17:14 learning to meditate, to really be centered in yourself, to understand where you are. You can then be there for other people. And I think it's more a matter of, I think, cancer patients need someone to talk to. They don't need people to talk at them, you know, they need someone to talk to, and just be there, and under and accept what they're saying with grace, and just let Unknown 17:41 it sit, you know, Unknown 17:42 let it be because it is there it's an elephant in the room for sure to share that with someone and just have them hold it with you is I think the best. The best thing they could do Unknown 17:57 so. So, If someone said to you, you know, hey I'm here, I'm here for you. If you just need to talk if you just need to cry I'm here I can listen. Yeah, no, or if you need me in some cases maybe or let me know if this, if there's something that you feel like you want to talk. One of the things I think I have, I have both received an offer is sometimes I will say to people. If you need to talk to somebody outside of your immediate family like sometimes you have to like the burden is great, right. And you say, you just need a son of yours. You know, not a shoulder virtual shoulder now but if you need to sit at yours like outside of your your your closest people that I'm here after that. Unknown 18:47 And I think that's really all you can do because yeah Unknown 18:53 it is horrible. Unknown 18:54 It is terrible. It is an elephant, and also sometimes stepping on your egg, literally. Unknown 19:02 Yes, but, you know, I Unknown 19:04 think, saying that means so much more than, God's will give you only what you can bear, or, you know, we were supposed to be here for just this amount of time. You know, that's just crazy like I don't know what to say or just say, I'm sorry. I'm really, I'm just sorry, I'm sorry that you have to go through that, but you know with me when people say that I'm like, Unknown 19:33 I, Unknown 19:34 I know you know where you are all of your life experiences is huge the place that we, you know, you are today. So, if you don't like me today then maybe we can take away the brain cancer but that's been a huge part of my learning process to be where I am right now so Unknown 19:53 I wouldn't I wouldn't change it. So, you know, it's because in the end. Unknown 20:00 I'm okay. Unknown 20:02 Whatever happens, I'm still okay. Unknown 20:07 Like you said that the chronic illness element of it like we don't think about it like that I know that we talk to people often about, you know, what's considered to be a death sentence or terminal illness, we talked about it like a we're all dying, we don't know the other day of the hour You know, knowing that you have something that could accelerate that has its, its mental health challenges and it also has, like, like you said you have been able to find the meaning, a lot of meaning and that but you can't impose meaning for somebody. I think that's a very important thing that you said especially coming from somebody religious I think it's important to hear from you. Because a lot of times people will do that like oh well. God said or not what it's like when somebody is going through that process it's like let them come to whatever they, you know, let them, let them apply meaning you just be there and, like, just listen. That's fine, I think, Unknown 21:13 I think, yes, I, I have a really hard time with people. And I'm Catholic, I, I went to church faithfully now it's all virtual you know whatever but I think that the end goal of all of it is is love. I mean, I think that we are to be there for other people to truly love them and to truly be deeply listening to what they're saying. Deeply empathetic deeply feel what they're saying, I think. Isn't that what we all want, you know, just to be deeply heard and deeply understood. I think that's the greatest gift you could possibly Unknown 21:59 give. So, so that's a, that's an amazing lesson and so speaking of lessons I know that in your book you have some lessons, you have some lessons. I don't know if you wanted to talk a little bit about that, anything you wanted to share about the lessons from the book. Unknown 22:17 Well I. So, do you want me to read the let like what the lessons are, whatever, Unknown 22:22 whatever you want. Well, Unknown 22:28 the first part is an introduction, and you know I say a lot about that. Don't take it just as God, take it as, whatever you need it to be. I'm Catholic, this gets spiritual at times, but but spiritual not religious, you know, and to us and the masculine pronoun like it bothers me too, Unknown 22:52 I get it. Unknown 22:54 So I start the book out. I always know that when I get a book. I read like the last few pages to see if it ends well, you know, And so, knowing, knowing that for diapers. Unknown 23:13 It doesn't doesn't look good. So I said, Unknown 23:16 I'll save you the effort. This is the last chapter, I'm putting it first. So you don't have to flip pages you can just read this and if you don't like it, don't worry. So it's reflections on death, and that's my first chapter, because like you said, we will all face death, at some point, you know and and it's hard to to really understand. Unknown 23:45 Being in that place. Unknown 23:46 If you're not in that place, but we all are in that place, Unknown 23:50 Jerome saying, yeah. Some of us just give warning when others don't. You know. Unknown 23:55 Yeah, and I, I am grateful. That's actually someone said that to me that I have this long, slow, goodbye to everyone and everything that I love. And to be honest, I am grateful for that, you know, which who knows if that's really how I'm going to die or not But father Mark Mike Schmitz is on ascensions presents on YouTube. And he has several videos that are just he says things that are really in a way that you just like, ah, I understand. And he has this video on, it's called memento mori. And it means in Latin, remember your death. And when Christians would greet each other back like in the, in the times just past Jesus like orally. They would say the mental mourning and funny greeting like Unknown 24:55 remember you're Unknown 24:57 sitting down, keep walking. Unknown 24:59 But I think Unknown 25:00 it's a good reminder to always be prepared, always be thinking and, and I keep going back to this to this is the second part like be present. The present now, because right now in the current moment is the only one you know you've got, you know, I, and I think by doing that, you can be present to your own death. Because you are invested in, you know, in that moment. So my next chapter is reflections on my childhood. And I have to admit, I have to admit, I was the oldest, and I, I just pretty much treated my brother and my sister, my brother, like, I was so mean to them. I was so like Adam has an older sister and she like cooked meals for him and tutor him, I was like, worse like. And I still like to this day, I apologize to my brother because I just I was like I know I'm so sorry. But my sister actually, and I read about this in a later chapter, she had hydrocephalus which is. Unknown 26:25 So three cerebral spinal fluid Unknown 26:28 in your brain, and it just keeps making more and more so. Her head actually got was enlarged, and it was pushing down on her so they call it can't think they made her I pushed down. And now they diagnosed in utero, they go in with the shunting, while the baby's still in utero, and they come out and they're born, fine, but we can't be they didn't realize it for the first six months of her life. And so, it came with some disabilities and so they just was like she just, she couldn't understand things and. And so I just like marched on my way. And if I saw them you know I like walked by Sacco or something. After she died, I felt any amount of guilt because she was in the hospital, every couple of years when she would grow the shunt, which is a tube that drains the spinal fluid cerebral spinal fluid down into the belly of the abdomen. Every time she would grow it would like, pull, and they have to go back in and put it up more to end. And she had already been in three surgeries that year. And she went in. She was the most. They named her candy, Unknown 28:00 I guess I'll talk about that. Unknown 28:04 Canvas means like. It means sunshiny goodness and joy, and that is everything that she was, I mean she enters so much stuff that she didn't understand. She actually, I, I learned that she, she was on the bus, and one of the boys thought he was all big guys and asked her if she was a virgin. and she was like, No, I'm Italian. Because I was like, that's how she was she, she made everyone feel amazed. Like, really, really good about being in her presence. So, I then wrote about reflections on marriage. And I think I've read a story in there if I can. But you came up to me we were living in Vermont, which so it was four years ago and they came up say all three of them and alive, and they were like, and so Sophia was talking because she's the oldest and and so she does the dirty work, but they were all sitting there and they're like, Mom. Which one of us. Do you love the best, and they were all like, going to themselves. And I was like, Papa. You don't understand. Which one do you love the best. And I said, Papa. And they were like this. And I said, I was born from myself, I was made to love you. But, Papa, I have to choose. Every day, when we wake up, I have to choose to be in a relationship with him. Unknown 29:50 Very good point. And they, Unknown 29:53 it took them. I think it took so then they went away. They came back the next month. same discussion they came back the next month. And I think finally they, they were like, Oh, she loves us because she Unknown 30:10 was happy. Unknown 30:12 But she chooses to love and I was like you're gonna graduate and move on here, and I don't want to be a stranger, with Adam, when you're gone. I want to know him I want to love him, I want to love him more than when I first married him, you know, and because of all of what we've been through, not a total stranger to because we focus on, you know, different kids or you know anything else. I think you need to choose each other every day. I think to truly love is to truly listen to how they're what their perspective is what their needs are what they are. And you know when I was first diagnosed and pretty much the whole time I was in Arizona. I was, I was really mad at God for giving me this cancer that you know once I had my third surgery we realized that it was just going to be recurrent. And I was like, I have two beautiful kids. I have a husband that I love, I always have a school practicing medicine that I love and I was, I was in breach with him like this is not. This is not what I deserve, you know, but because I couldn't really take it out on thoughts. I took it out on Adam, I wasn't listening, I couldn't have space for even his issues with my surgery with me and being different than, you know, one of the guys I met at a brain cancer, group. He called themselves. Joe 2.0, and I was like I'm not like a nice Unknown 31:52 five point out, but Unknown 31:55 I didn't have space to hear that for him and in fact I was, I go to clinic and be friendly with people and all of the time having a overwork my brain about you know your differential diagnosis and the next question is and I lose a word and I'd be like oh crap people are paying me to be their doctor so I like all of that was going on. I would be exhausted by the time I got home, you know, and I had two kids. And I really didn't give him the space that he needed to go through surgery, because I think my whole family has brain surgery, it's not just me. Of course, right. You know, Unknown 32:36 I want to ask you about Adam and the kids so how. So, your kids, your kids have grown up, they've never known anything else because they were born after the first brain tumor. And I was always like oh my god Amy's having children and, I mean, tumor child to my like like amazing person, and going through school like I mean anytime I thought oh my god I can't take any more. But, but, you know. Unknown 33:05 So, Unknown 33:06 how, Unknown 33:07 how do your kids. I mean I know this is a big question, you know, but, but in general it's like, how do your kids deal with a mother with spreadsheets. Unknown 33:19 You know I I've actually, I've thought about that a lot. And as they've gotten older, I have always been honest with them. They've always known to a certain degree based on you know what ages and all that. You know where I stood and for a long time. You know most of Vermont we didn't talk about it because I thought maybe this is it, I got to, I was practicing the medicine that I love, we totally changed our diet to be everything that you're supposed to do at this event. And for the first time, I started imagining us with like gray hair and being that retired couple that everyone thinks is so cute rocking it on the front porch and, you know, and then my fourth tumor came back. And I was like, Oh, this is my life, you know, Unknown 34:10 and I think Unknown 34:13 okay so they knew that I was going to surgery you know they. I think now. I think that because my brain function is rapidly decreasing. You know, my kids that I have a joke that they'll tell me something, and or they'll be like, do you remember now that I stored that one in the hole in the hole. Tell me about that one. And it just goes straight into the hole. Unknown 34:48 I can't, you know, the brain is, is this is a terrain, in and of itself I mean it's almost like, you know, it almost like the United, you know like if you think about the states it's like you have one section of California and the other one that is like, Alabama, you know, and I think, I think that's important for people to know who may be caretaking as well you know i think that you know the frustrations of daily life sometimes it's the little things that are the most or the thing that kind of just throws you over the edge and the kind of back to that support that, you know, people need to give other thing I was thinking about that it's just about regions of the brain. And I don't, I don't have the specifics but you know when people may be listening to this interview, and thinking. I mean, I know for you the word finding is not what you're used to, but for most people listening to this. It's really difficult to tell that something's wrong if we hadn't told them at the outset, they really would not know that. And so it kind of. It's not indicative of what somebody may be going through in a way out, and I found that's true of, you know, whether it's a brain tumor or it can be other things that affect memory or reports that are affect people's like, you know, executive function or, or, critical thinking or, or even little things and that can cause a lot of frustration for caregivers Is that why is that you can do this, but you can't do that and it's almost like are you doing this on purpose or what, you know, so I think for people listening. Sometimes, because we never know what people get out of things you know and I think that that's a, that's an important story that just exemplifies that I mean hearing you. You would never really understand that you would, you know that that like working memory would not necessarily be there although you can tell me all these other things and details Unknown 36:49 like long term memory long term. Yeah, I totally have that perfectly fine. But when you tell me something. I literally have to write it down in my calendar. And before in the morning with my calendars, to do during the day. And now I have to put it in my calendar and set a timer. It has the time the title of a walk will be like. Check my calendar buddy up, right, I've got this because I, I, that's how much I don't short term memory to save doesn't reach anymore and, you know, recycle the brains plastic and you can read it now that they've cut out half of it, you know, it just it's just gone, and it's growing more and more and more, you know, and Unknown 37:44 so Unknown 37:47 I think at that point. I knew, like she's really sick, because I think for a long time they were frustrated that I couldn't be like other kids moms I couldn't. I don't have my driver's license anymore. You know I can't drive because I don't feel safe to drive I can't, I can't be around people like a big group of people makes me feel like so overwhelmed when before I would sit on the sidewalk with them at Gray's and like this is how you get more candy. And then we went after and I was just like, Oh my gosh, I cannot act like I had to walk back to atmospherics house because it was just way too much and that made me sad like, I don't want to have to give a parade. But slowly slowly slowly, I had to get those things up. but how that affects me as a person. It doesn't change. You know, even though, you know, and we moved here for us to have a better support system Adams family's here. My mom moved out here, you know. Unknown 39:00 But just to take Unknown 39:06 take really appreciate every moment, because, you know, I know specifically that I don't have a lot of moments left, you know i i. Unknown 39:23 You were saying you were saying to appreciate every moment because you know you don't have a lot of moments left. Unknown 39:30 But I think with all of us you know like I said earlier, what you where you put your focus is where what you, you know, where you invest will invest back in you, and you know my decision now, Unknown 39:44 I got it. Unknown 39:46 I think that you know I put my personality in being a great fit. And I was a great MD. But I felt like God is stripping away all of those things that I, I thought, that meant who I was Unknown 40:07 just, you know, Unknown 40:11 that's all Unknown 40:13 I can do is just be. I don't have to be anything. I just have to be. And that's where I love this just by being being the beloved, And Unknown 40:29 I know I love you like that. Like that. And every time I talk to you. I'm reminded of that it's just, you know, it's just the spirit of who you are comes through. Unknown 0:04 Anything you know so that's. And I'm really grateful that you've written the book, because you've poured yourself into that. Unknown 0:18 And that wants me to ask you about legacy, right, because I think, again, as some of you know for people who are not religious and maybe don't even really have a strong spirituality or, you know, or who are just actively atheists right they just think this is just the end, even with that. Unknown 0:43 Many of those people, a lot of times focus on legacy like the idea that you know we're not individuals I mean anybody can see that this is like, you know, this is a connected organ of nature in some way, even if you don't want to call that you know spirit that just by just moment by moment. Unknown 1:04 So, what you for those people. Is there anything about your lessons are how you how you thought about meaning and life. That is, I guess, when breached and related to legacy related to legacy. Yeah, and how and how are you, when you say live each day, like it's your last How are you thinking about your legacy to me that book is obvious. And kids are obvious, right. Unknown 1:37 And actually, my legacy I think it started by me writing letters to my kids about different periods in their life that I won't be there for, you know, when they go to when they graduate high school when they graduate college meeting their husband or wife, or, you know, having babies and things, and all that stuff. Unknown 2:03 And so I started writing for them, and they are who the book is dedicated to because it's really their book that I'm just sharing with everyone else who said in there, too, you know, even if, even if the whole thing is made up, and even if it's a farce. And, you know, which I don't think so but if it is, and can really just die and go into the ground, and you're done. Unknown 2:33 Even then, you're not. You're not struggling anymore. You're finally set free. Because, you know, and in the memory of you. Unknown 2:44 I think we are all expressions of our ancestors, my great great great Gregory gorilla is coming out and when I say, you know, and, you know, I have my, my dad's mother's eyes, and I love my eyes. You know, my hair heard but I really that's the one feature I really love, and I gave it to ever since Sophia, and these my grandma's if you are lucky to have that and pass that on. You know, as you know, with my sister passing it each highlight, I talk about a memory of her or reliving experience with her lecture video with her, helping to know that the man is loving and protecting and shining down and from heaven. Unknown 3:37 And I think that if. Unknown 3:40 So this is not for the atheists, I suppose, but like I feel like all of us are getting to heaven at the same time, we will all show up together. Live on like this time right where it's like, 20, years ago, 4000 years ago and you know, but I think Heaven is the eternal now. And maybe we'll all just be energy. Maybe that's how you all meet, but I think we'll all meet up at the same time, and sort of be a part of a universe is a nice thing, you know, and I, I actually have a form that I am happy to put on the back of the book or in the Unknown 4:29 end I feel like I just want to say before I feel like in life, you know, I, it's interesting watching the weather change and I feel like that's where I am, I feel like I, I'm in the autumn season of my life, and, you know, Unknown 4:46 going into winter. And it's interesting that that's what's happening at least here in Pennsylvania right now. But I wrote this poem. Unknown 4:56 I sit here watching the autumn blowing in the wind, bright orange and yellow as they fell to my feet. Seeing them disintegrate. As I walk reminds me of the disintegration of my brain, day by day, a little more reminds me that in death. There is also life. I am united with the leaves, part of the same cosmos. We are sisters, both reflecting our brief time on Earth. A short chapter in the book of our existence. Unknown 5:31 I think we have lived before we decided to come on this timeline, and we live after, you know, I don't know what that looks like, I don't know, I don't know that yet. But I think you exist beyond just this existence. I think you've existed before and mobile on, I think, in death it's just turning the page of time. You know, it's like, oh, that happened or, or, you know and and our thread, kind of, doesn't make sense to me, what we say and how that affects people, but then we turn the page of time we look at this tapestry that is so beautiful. And you see how your string made this into this fantastic tapestry. Unknown 6:24 Well, you have affected me. You've affected me. Unknown 6:29 And although I'm not one of the kids. Unknown 6:36 But your, your spirit has affected me you've kept me going. Just, just knowing you and has given me so much strength and really difficult times, whether you know that or not. And so, whatever has affected me then those bonds affect all the other people that I have. And so I hope that people, you know, maybe even people who don't have kids like understand that what we do sometimes we don't even realize how much we're affecting other people that are by Apple, what we do and whatever and this is one of those examples of how you have affected people around you, like me, and, and I wanted to say that I'm immensely grateful that we coincided in this. However, for, for however brief, a time, it makes me in this. This timespace little fragment. And by the way, crime is good people. Unknown 7:37 You should do it more often it's kind of a plug for crime. Unknown 7:43 And I'm grateful for that. Unknown 7:47 And I, I am so grateful to know you as well and and i think i think when I think of death is just a passage, you know I'm just passing through. Unknown 8:00 And I think that in our beloved perfect self. I will know exactly who you are in your beloved perfect self. Unknown 8:10 So, Amy. Unknown 8:13 You are so good at just taking the things that people feel are taboo, or don't feel like they can talk about because it's too emotional, and just being so down to earth about it and practical, and that's, that's one of your many gifts you want, I want you to. Unknown 8:37 I know that you've, you've told me that you're part of a long Goodbye, that you talked about is that you've had the opportunity to really look into. Unknown 8:46 How do you what do you want to do with your body. What do you want to do with your body. When you die and I think this is one of those things that people just. They don't want to. Unknown 8:57 They don't want to think about it and they don't want to think about the process of of just death planning, and so I think there's nobody better than you, to share that part of your story and say what what what have you decided what did you plan to do with your, your bond. Unknown 9:14 Well, actually, after once I once I die in Pennsylvania. There is. It's called the humanity gifts registry, which I saw I signed up to be to donate my body to science to be a cadaver for to train future medical students, you know what, what, what the body looks like and. And I think for me. Unknown 9:48 Well, I know that you know, I said, I told this to my, my guy gynecologic oncologist, oncology surgeon. And she kind of laughed because, you know, she's like I just, I've never thought of it like that before. But to give myself as a gift, in, in, in undergrad, I also had anatomy lab. And one of the ladies that had donated her body was a 45 year old breast cancer patient. And at the time we were like oh my gosh that's so young, because most of them were in their 80s and 90s. Unknown 10:27 And I thought, you know, when they got to her tumor. I helped her tumor in my hand like that changes how you see people that have that have breast cancer when you're like, I've seen breast cancer, like the actual cell, you know, and so I said to my surgeon. I feel almost bad having a hysterectomy because they're going to get down to my pelvis and be like, she has no reproductive organs and there's nothing. Unknown 11:01 I could you know once they get, you know, go to my head and my baby to vibrate they'll be like Unknown 11:14 a lottery. Oh my goodness. She's got like, Unknown 11:24 I will be looking down from heaven. How literally mapping, you know like, I can't wait to see what nicknames they give me and and take out my eyeball and squish it in there like that. Your teacher walks by your professors like you need to respect those bodies really, really out to brands but a trigger warning. Unknown 11:48 Totally pulling that tendency to make the orange flag out like I I want them to do that to me, and I want them to learn from that and I think, you know, a little, a little humor, it. You have to have humor and to lobby. Unknown 12:08 Yeah. And so, so I'm doing that and I always wanted to be cremated I don't really want to take up any more space in the ground, you know, but. Unknown 12:21 So, my family won't get my remains for, you know, up to two years after I die. And, but then I was thinking like what to do with those remains and, you know, like so they've got it. And I think what I'm going to do is buy what's called a bio urn, and you can be could put that in and there's a bunch of different several different companies that do it, but you didn't earn where you put my ashes and soil. And then you plant a seedling, and it will grow. And so I just thought that sounds like an amazing gift that I can give even after I die, helping salving medical students, and then growing into a tree with roots, and I, I love the Vermont sugar maple so that's what I'm going to be. And, you know, I can see my boys kids like tapping it and making syrup and all this stuff like what I love about being in Vermont and and all that. And so, you know, I feel like that's a way to further give and further be a you know and it's like if one of my kids is really missing me, they can go and sit under my tree And to me, and, you know, and I, I feel like that's, Unknown 13:59 that's what I feel the most comfortable doing is giving away, even after I after I go, giving away. Unknown 14:11 I cannot tell you that I just, I love that plants so much. I'm so excited because the, the part, the part about donating your body to be, to the cadaver lab in a medical school. Unknown 14:27 It's exactly what I want to do now have I done it Have I gone through the process I haven't and so you're reminding me to do it because nobody knows, you know. Yeah. Unknown 14:39 Well that's exactly what I want to do and for the, for the same reasons because to me. I was always so appreciative of the people who didn't like their body so that we could learn and remember I remember you know like work you have to go through to, you know, in some ways, distance yourself enough so that you could actually, you know, move the tendons and dissect saw open and do those things you have to it's a valuable lesson that you learn right, and at the same time. I remember the day that we did the hands. When we first uncovered the hands, and I had to leave the room, I cried, I started crying and it was an elderly man. And I, when I saw the hands I. That's when I just grieved that person's. Unknown 15:28 I grieve that person's life and, and felt just this incredible sense of compassion connection and loss, even though we didn't know each other in life, but that person gave such an amazing gift to me, that also keeps on giving because when I been when you do physical exam or you, or you're even imagining illness when you're doing an intake. you have submitted a picture, you know, you've seen the insides all the way, you know every layer. And that's very different that's very different than not seeing those nice edit takes a lot for somebody to say I want to donate my body. Unknown 16:11 So I really appreciate that. Now the other part I didn't know about and I'm going to learn about it and I hope you know other people look into it too, because I'm just going to think about you every time we make pancakes. Unknown 16:23 If you go first. We don't know that you may be thinking about me, as you are. You might be thinking about me while you're while you're making pancakes but definitely. Unknown 16:35 I love, I love the beauty of that because it just really, really, instead of distancing ourselves from the cycles of life, it's jumping straight in. And that kind of my personality I voted for. And I think that even if you know all that sounds horrible and you don't want to do any of that, even that, you know, planning now what how do you want the end of your life to be both medically, you know what, if you want CPR and respirator and all that or no or, you know, like those make those decisions now. And so that way your loved one doesn't have to figure out what to do when you're actually there, you know, make those, and. And so, yeah, I sent the letter. And I just got a letter back saying, you know, we have officially accepted you into the humanities gift program I was like I was like I got into college. Unknown 17:45 This might be a little much, but I'll say it. So Adam and I have been, we realized that when you die, you. Unknown 18:02 You should the bed. Unknown 18:05 Literally, because all of your muscles to relax and figuratively like you're not there anymore so you should the bed. So we have a folder both on my computer, and printed out, that is SPV, And, you know, all of that information, for me, is in there, even I wrote my obituary like I put down how I want my memorial service to go you know all of that planning and you know I'm not dying. Tomorrow, that's not, that's the point. You know to do it now so that everyone knows what's going to happen, you know. Well, you know, particularly, like you said you know you have the gift of doing these plants. A lot of times people. If there's an accident or somebody gets sick quickly. None of the loved one to know what to do. And then, on what I needed. And sometimes there's not even the correct permissions I mean sometimes if somebody that maybe the technical next to kin is not the person that you really want making your decisions for you like in your app. Adam, is that person but for a lot of people, you know, they may have, you know, a relative that is not somebody they want making decisions, but they are that will make them cancel. So, when COVID, you know, by going into the hospital and and not allowing visitors and all that stuff like even just considering what the disease out pandemic is even just considering that to do the end of life planning so that you know your family knows what you want when you go in. Yeah. Unknown 19:44 So did you, you know, your Adam is your next of kin, did you have to do any extra paperwork, do you can you talk about any of that. Well, so in Pennsylvania, they have. There's two different forms. Unknown 20:00 If you don't mind, I get my stbx folder I can tell you what that are. Unknown 20:05 We get your, your shifts. Unknown 20:14 Okay, keepin it real Amy keep it a real. Unknown 20:20 Like I said, That's kind of always been my gift. Unknown 20:25 My, whatever. Unknown 20:29 So, you know, if you really if you want to donate your body, there, there should be a way, you know I just put in building my body, Pennsylvania, and it brought me to this website so you know if you want to donate your body in the state that you live in. Unknown 20:46 You can put that again, your family probably won't get your remains, and you have to write them to ask for your family's remains and I already wrote that letter too. Unknown 20:59 But, that way, you can be a little bio early. Unknown 21:05 So in Pennsylvania they have a Pennsylvania, advanced Health Care Directive. And it taught me sounds like a really simple. You know, you don't. Unknown 21:15 You can not you don't have to know medicine, but to fill this out it's really basic and simple. You know, choosing what you want as far as life support treatment. Unknown 21:31 Breathing machines dialysis feeding blood transfusion surgery medicines all that. So you say yes, no, and they give you options, maybe. Unknown 21:43 And then Unknown 21:47 there's also another form of employment, that the doctor has to fill out. Unknown 21:56 Coffee and Unknown 22:02 I had them fill that out too. Just to be clear, you know what I wanted and they, they had to sign my gift registry as well. So, you know, look into what those directives are and how to, because that that was a basic and everyone in every hospital in Pennsylvania. You know knows what that mean for those papers are. Unknown 22:30 And, and, you know, bring that to your next appointment, even if your doctor's like I had one doctor because I've had all this stuff for, you know, years, and I had a document with like, I'm not we're not discussing that right now like I don't want your stuff. I don't want to sign like not talking about dying now. She's like, No, I don't want to, you know, when my surgeon was like, okay, you know, if that's what you want. Unknown 23:05 I'm, I support that. And, you know, she may find it and put it in my chart. And so, you know, even in that like I knew I had a really good surgeon, because she understood what I what I wanted and what I didn't want. Unknown 23:22 I think the more we talk about things like this, it helps to normalize it because I think I've heard people say, you know, they're afraid if they talk about it, you know that it's going to kind of bring it on or they're going to resign themselves or whatever and I think I don't think it has to be either or I think just like you said, you can just like for anything else you've planned for some essential thing, and I mean in terms of death is like World War One. But we are all going to die that that's, you know, it's not like you're going to bring on one thing you don't get out of. Yeah. So I think that's really, really helpful, that you shared that. Yeah. And again, like putting file or, and there's different companies and they all call it something you know they have their own paths and didn't have to name. Unknown 24:12 But for me, and they have like 30 or 40 different kinds of trees. So I went through and like found that maple tree but you can have, you can be any kind of tree. Unknown 24:28 I love that I'm gonna look into that. Unknown 24:32 I am I love, I love the rest of that because I already have. Unknown 24:37 We had the same thought of donating the body to to the cadaver lab, but I had not. I had not looked into the tree part so I like, I like that continuation, all the way through so thank you for and I, I, a fortunate unfortunate thing is, you know, for 16 years, I've been dying slowly. Unknown 25:05 Maybe not as much as right now. Clearly not as much, but, you know, I've had a lot of time to really think about what I want to think about what's going to happen. Think about how it's going to be, you know, I'm having hospice I don't want to die in a hospital. I said, even if I get COVID and I get pneumonia, I'm not going to hospital I don't, I don't want to die there. Unknown 25:29 you know. So, all of those things, thinking about them for years, you know, now that we're finally in that position, which is fortunate unfortunate, you know, even now it's like so. All of these things just go into effect. Yeah. At the same time, as soon as she came out my first thought was, I am never doing this again. Unknown 25:57 And then, you did it two more times, and nine months later, again really easy. Unknown 26:08 Was it ever it wasn't Everest that you had. Yeah, right. I just remember, you know, your you know your short stature people can't tell. In the future, you know you're not at all yeah all for living. and I remember you nine months pregnant recovering from brain surgery, and nine months pregnant, and in a final exam that I thought I was too exhausted to take, and I would just look at you and go. Unknown 26:40 Okay, let's do this. And you know and I'm not trying to like, I'm not trying to glorify exhaustion, I'm not or. But, you know, but sometimes there are times in life when you, you know, that are really really rough, and you just got to get you have to rise and you got to get through them, you know i'm not saying like everyday we need to like stack our lives with stuff that exhausts us and make us sick that's a problem, is it the rabbit my lap moment. Yeah and I like you guys are crazy to have two babies in medical school like I think I was one of like, I would feel I've never one other student ever at our school that had two babies in school, you know, like, just you know you just put one foot in front of another and, and eventually you come out on the other side. Now looking back I'm like, was like. Unknown 27:35 At the same time, I spent less and less time at home studying because I was more and more mom that I had to schedule in study time. And my grades actually went up after Sofia and went up even more after Everest, because it was like, I had, I got to the library, I had to study I don't have this much time before I had to go home and feed somebody right and it's amazing that you know, you think, what, what we did was so difficult and so hard, but yet. I learned to manage my time in a way that helped me throughout my life, which really helped me to come up with my latest motto, the major part of it because I lately with all of this going on. My motto is, stay calm and get informed. And so, if like, you know, there's all these things happening and it feels overwhelming and, like, perhaps, you know fibroid tumors and three babies or, you know, COVID situation the pandemic you know and and people are going through really, that's why I think it's important to hear you now people are going through really hard things I was telling you before we were recording that here in San Antonio, and in many many places you know people have lost, multiple people in their family at once, like it's, it's just like this overwhelming. And there's really none of us at this point who don't know someone, or have lost someone to COVID so I think just hearing these stories though also, you know, in the face of just seemingly insurmountable challenges. You know, we often do just have to put the next foot we have to do the next right thing is to stay calm and learn everything we can. Unknown 29:34 And in that learning getting information, at least to me. And so a lot of people have been talking to. It feels like. You can take a manageable piece of it. You know, like I would think that your grades would go up after having a baby. Unknown 29:51 And it's like, it makes sense because it's like it really calls all the distractions and you have to you have to focus on what's important and that is that may be breastfeeding. At this moment, and this moment you have X amount of time you're going to study and there will be no distractions, and so forth so I would go to the library. Unknown 30:15 And you had the support of Adam I was not let's not in any way diminish that, you know, but I also think that it's not the full answer. That's part of it the other, the other part of it is we have, we are having to find new and different ways of supporting each other and supporting people who don't have the support. Because we don't really have a society that values social safety nets. We're still working on that. And I have learned with in meditation, you know to. That's where I, I finally learned that it's, you know, I am the beloved, that's what he means beloved right. And that's the name of my work, but that I am suffering, and, but I I can still find that peace and hope and joy that comes out of that suffering that. And then realize that everyone else is suffering too. I think it's written for struggle in whatever way that looks like for you, you know. Unknown 31:28 So, it's coming soon. But lemonade for a camper. If there's one thing that somebody you know you want somebody to take away from today, I'll say what I what I feel like I want to take away from today and then I'll let you have the last word. Unknown 31:45 I feel like so many things but if I want to say one thing. I think the idea of ourselves as beloved ourselves as beloved like the title of your book, seeing yourself as Beloved, and, and also seeing each other as Beloved, because in order to all the things you said in order to like really listen deeply and just be just be with people and to I think place enough importance on being because we're so about doing, you know, they haven't lost that I think if we really, if we really treasured, the person in front of us as as beloved as they are, and we put that important as much importance as we did on like prestige or money or shopping and whatever else that you know people put prestige, or put importance on that we would we would know how important that that encounter was and how much it echoes through time, or what however you want to describe it like use lefties so Belafonte said, you know, that being a beloved with a beloved is, is what we need to do every day, whether we have a warning about our death or not. Yeah, well, and I think, you know, in Christian terms, it's the Christ in me means the Christ in you. It's the, the spirit in me, that can greet the Spirit in you, you know, that I think that is definitely. Probably the biggest message I would say and by just truly sitting and meditating and just being Unknown 33:32 there are. Unknown 33:39 I can't think Unknown 33:42 Zen Buddhist way is, you know, tick tock on. I love how he said, what are they called the Christian meditators are like you sit and you have your feet down and you know you, and you have to meditate the same word, every time and you only do it for 2030 minutes or you know I'll just like rules around what how you do it, which is a palapa. Unknown 34:15 You know, I do sitting meditation, I do walking meditation, I do. Unknown 34:22 Drinking tea meditation, I do doing dishes meditation, and what he's saying is, you know, really, repeat that phrase or and he changes the phrase, depending on where he is, you know, but just always be present in that moment, I think it adds so much, because before I wasn't present in the moment, even when we were living in Milan I was, I was running my own practice on my own and I turned out the million hour during America. I wasn't really there for my family, and you know now, just being is I think the most important part of life. Unknown 35:07 So, yeah, I think, and I said that at the end of my book, you know like, from one beloved to another. Unknown 35:18 Because we all love it, we're all like you said, to see each other in that way. I think will make all the difference in the world. Unknown 35:30 So we have been speaking today with Dr. Aimee Knauff. The book is Beloved, and brain cancer. Living each moment as if it were your last. Thank you so much for listening spending your time here with us today. Thank you for having me. Thank you.