1
00:00:07,760 --> 00:00:11,200
Speaker 1: You're listening to Alive Again, a production of Psycopia Pictures

2
00:00:11,240 --> 00:00:12,400
Speaker 1: and iHeart Podcasts.

3
00:00:13,119 --> 00:00:17,239
Speaker 2: Preparing to Die is now grieving every single loved one

4
00:00:17,280 --> 00:00:19,440
Speaker 2: that you have that you're not going to be with them,

5
00:00:19,480 --> 00:00:21,480
Speaker 2: So it's every one in the world all at once,

6
00:00:22,120 --> 00:00:26,760
Speaker 2: and that was just heartbreaking and devastating because you're now grieving,

7
00:00:26,920 --> 00:00:29,120
Speaker 2: you're losing to all of them at once. And then

8
00:00:29,440 --> 00:00:31,880
Speaker 2: to the other point is then that the switch just

9
00:00:32,040 --> 00:00:34,920
Speaker 2: completely flips when in my case, all of a sudden,

10
00:00:35,000 --> 00:00:37,920
Speaker 2: I start waking up and I'm like, oh my gosh,

11
00:00:38,320 --> 00:00:40,400
Speaker 2: I'm want to get some more time here. You know,

12
00:00:40,479 --> 00:00:43,440
Speaker 2: five times now I should have died, and thankfully I

13
00:00:43,479 --> 00:00:45,720
Speaker 2: was able to survive and find this drug. But are

14
00:00:45,760 --> 00:00:48,400
Speaker 2: there other things you know, that are hiding in plain sight?

15
00:00:48,560 --> 00:00:51,000
Speaker 2: So that became an immediate thought. I was like, Wow,

16
00:00:51,320 --> 00:00:53,239
Speaker 2: you know what else is in that CVS that could

17
00:00:53,280 --> 00:00:53,960
Speaker 2: help more people?

18
00:01:05,440 --> 00:01:09,560
Speaker 1: Okay, okay, hello, and welcome back to Alive Again. Today's

19
00:01:09,600 --> 00:01:13,839
Speaker 1: guest is doctor David Fegenbaum, a physician scientist whose life

20
00:01:13,840 --> 00:01:18,080
Speaker 1: has repeatedly balanced on a razor's edge. During medical school,

21
00:01:18,120 --> 00:01:21,039
Speaker 1: he was diagnosed with Castleman's disease, a rare and deadly

22
00:01:21,080 --> 00:01:23,920
Speaker 1: condition that nearly took his life five times. With no

23
00:01:23,959 --> 00:01:28,000
Speaker 1: effective treatments available, he turned his desperation into determination. As

24
00:01:28,040 --> 00:01:32,000
Speaker 1: both patient and scientist, David made a radical decision. If

25
00:01:32,000 --> 00:01:35,720
Speaker 1: no cure existed, he would chase one himself, even if

26
00:01:35,760 --> 00:01:38,759
Speaker 1: it meant experimenting on his own body. What followed wasn't

27
00:01:38,800 --> 00:01:42,039
Speaker 1: just recovery, it was transformation. David co founded the Castleman

28
00:01:42,120 --> 00:01:46,680
Speaker 1: Disease Collaborative Network and eventually discovered a repurposed treatment that

29
00:01:46,720 --> 00:01:50,480
Speaker 1: has saved his life and many others. Amazingly, his disease

30
00:01:50,480 --> 00:01:53,240
Speaker 1: has been in remission for well over a decade. Alive

31
00:01:53,280 --> 00:01:56,080
Speaker 1: Again is about what happens after you cross that threshold

32
00:01:56,520 --> 00:02:00,680
Speaker 1: where life nearly ends. David's story lives There about clarity

33
00:02:00,680 --> 00:02:02,680
Speaker 1: that comes from crisis, similar to what one of our

34
00:02:02,680 --> 00:02:05,960
Speaker 1: other guests, Eric Larson, said that the best way to

35
00:02:06,000 --> 00:02:08,360
Speaker 1: be successful is not to have any other choice. Well,

36
00:02:08,480 --> 00:02:13,160
Speaker 1: David didn't, and it's about turning fear and suffering into

37
00:02:14,000 --> 00:02:18,440
Speaker 1: not just survival but service. David is a scientist, physician,

38
00:02:18,520 --> 00:02:21,880
Speaker 1: and disease hunter. His work has since helped save countless lives,

39
00:02:22,240 --> 00:02:25,200
Speaker 1: but he began with one simple, brutal truth. He didn't

40
00:02:25,240 --> 00:02:28,519
Speaker 1: have time not to try. His mission has grown too.

41
00:02:28,960 --> 00:02:31,960
Speaker 1: He's gone on to save and improve lives by repurposing

42
00:02:32,000 --> 00:02:35,840
Speaker 1: existing medicines to treat diseases that they weren't originally designed for.

43
00:02:36,120 --> 00:02:39,840
Speaker 1: What he calls finding cures hiding in plain sight. Whether

44
00:02:39,880 --> 00:02:42,640
Speaker 1: in the lab, on stage, or through his book Chasing

45
00:02:42,680 --> 00:02:45,519
Speaker 1: My Cure, He's been driven by the belief that even

46
00:02:45,560 --> 00:02:48,360
Speaker 1: in our darkest moments, hope and action can lead to

47
00:02:48,360 --> 00:02:58,520
Speaker 1: breakthroughs that change lives. Doctor David Fagenbaum, thank you so

48
00:02:58,600 --> 00:03:00,720
Speaker 1: much for joining us on the Live Again. It's really

49
00:03:00,720 --> 00:03:01,679
Speaker 1: an honor to have you here.

50
00:03:01,880 --> 00:03:03,000
Speaker 2: Thanks so much for having me.

51
00:03:03,280 --> 00:03:05,000
Speaker 1: First of all, what is this cool view that we

52
00:03:05,080 --> 00:03:05,640
Speaker 1: have behind you?

53
00:03:06,400 --> 00:03:08,960
Speaker 2: So this is I'm in Philadelphia. So if you look

54
00:03:09,040 --> 00:03:12,680
Speaker 2: behind me, that's Market Street again from from West Philly

55
00:03:12,720 --> 00:03:13,480
Speaker 2: to Center City.

56
00:03:13,960 --> 00:03:17,360
Speaker 1: Nice. Nice. I just watched Creed with my son Roman,

57
00:03:17,400 --> 00:03:20,200
Speaker 1: who's like ten years old, the other day.

58
00:03:20,760 --> 00:03:23,880
Speaker 2: Well, we're very proud of Rocky and Creed and all

59
00:03:23,919 --> 00:03:25,520
Speaker 2: of them here in Philadelphia.

60
00:03:26,320 --> 00:03:28,920
Speaker 1: So yeah, I you know, I was so excited to

61
00:03:28,919 --> 00:03:32,600
Speaker 1: talk to you because, you know, Alive Again is it all?

62
00:03:32,680 --> 00:03:37,120
Speaker 1: It's all about like these what happens with people who

63
00:03:37,120 --> 00:03:39,600
Speaker 1: cross the threshold and I quickly realized early in the

64
00:03:39,600 --> 00:03:42,320
Speaker 1: show that you know, there's a lot of spectacle behind

65
00:03:42,360 --> 00:03:44,400
Speaker 1: some of these people who've had near death experiences or

66
00:03:44,400 --> 00:03:49,600
Speaker 1: brushes with death. And I quickly realized the spectacles great

67
00:03:49,600 --> 00:03:51,520
Speaker 1: to get listeners, but what I want people to walk

68
00:03:51,520 --> 00:03:53,800
Speaker 1: away with is just an understanding of you know, a

69
00:03:53,800 --> 00:03:55,960
Speaker 1: better understanding of their relationship with each other, of their

70
00:03:56,000 --> 00:03:59,360
Speaker 1: relationship with themselves, and the just an idea of the

71
00:03:59,400 --> 00:04:06,400
Speaker 1: forgity of life and the resilience of the human experience.

72
00:04:06,480 --> 00:04:11,120
Speaker 1: And you know your story really lives here.

73
00:04:11,760 --> 00:04:14,480
Speaker 2: Sure well, yeah, I'm just thrilled to be a part

74
00:04:14,520 --> 00:04:16,240
Speaker 2: of this now, the opportunity to reflect a but on

75
00:04:16,279 --> 00:04:19,080
Speaker 2: some of these lessons I learned from from nearly dying

76
00:04:19,160 --> 00:04:22,400
Speaker 2: and to your point, more importantly, how that's changed me

77
00:04:22,839 --> 00:04:25,480
Speaker 2: since then. Yeah. I grew up in Rolegn, North Carolina,

78
00:04:26,160 --> 00:04:31,520
Speaker 2: two amazing older sisters, two amazing parents supporting me and

79
00:04:31,560 --> 00:04:35,000
Speaker 2: guiding me. I fell in love with football at a

80
00:04:35,120 --> 00:04:38,599
Speaker 2: very young age, college football in particular, and probably around

81
00:04:38,600 --> 00:04:41,680
Speaker 2: the age of maybe eight or nine. I told my parents,

82
00:04:41,720 --> 00:04:43,720
Speaker 2: I'm going to play Division one college football and I'm

83
00:04:43,720 --> 00:04:46,520
Speaker 2: going to be a quarterback. And I set my mind

84
00:04:46,520 --> 00:04:48,120
Speaker 2: to it, and that's just about all I thought about

85
00:04:48,440 --> 00:04:51,240
Speaker 2: for the next ten years. I had posters all over

86
00:04:51,279 --> 00:04:53,800
Speaker 2: my walls with how far I was throwing the football,

87
00:04:53,880 --> 00:04:56,080
Speaker 2: how fast I was running, and I was sort of tracking,

88
00:04:56,400 --> 00:04:59,200
Speaker 2: you know, everything I possibly could, wow, you know, on

89
00:04:59,480 --> 00:05:01,840
Speaker 2: that mission and to one day played college football. That

90
00:05:01,880 --> 00:05:03,880
Speaker 2: was about all I could think about. So I ended

91
00:05:03,960 --> 00:05:06,920
Speaker 2: up working really hard and playing well enough that I

92
00:05:06,920 --> 00:05:09,679
Speaker 2: had an opportunity to play college football at Georgetown. And

93
00:05:09,800 --> 00:05:11,600
Speaker 2: you know, we're not known for our football, like maybe

94
00:05:11,600 --> 00:05:14,039
Speaker 2: those Georgia Bulldogs are that are near you, but yeah,

95
00:05:14,320 --> 00:05:16,520
Speaker 2: but we certainly do a divisional football team, and that

96
00:05:16,680 --> 00:05:19,680
Speaker 2: sort of was that that was the goal, and I

97
00:05:19,720 --> 00:05:21,240
Speaker 2: felt like I hit that and I was heading off

98
00:05:21,240 --> 00:05:24,280
Speaker 2: to Georgetown as a freshman to be a quarterback there.

99
00:05:24,480 --> 00:05:27,920
Speaker 2: And uh, and then my life just got completely turned

100
00:05:27,960 --> 00:05:30,480
Speaker 2: upside down because two weeks after I got to college,

101
00:05:31,000 --> 00:05:32,800
Speaker 2: my dad called to tell me that my mom had

102
00:05:32,839 --> 00:05:36,960
Speaker 2: brain cancer and the most severe grave four glioblastoma, the worst,

103
00:05:37,000 --> 00:05:42,440
Speaker 2: the worst of the worst. And that just completely destroyed

104
00:05:42,640 --> 00:05:45,159
Speaker 2: my foundation for how I thought about the world and

105
00:05:45,200 --> 00:05:48,000
Speaker 2: what was right and wrong, and it just it was

106
00:05:48,600 --> 00:05:52,320
Speaker 2: it shook me to my core and and and It

107
00:05:52,360 --> 00:05:56,000
Speaker 2: also set me on a mission because I watched my

108
00:05:56,040 --> 00:05:59,120
Speaker 2: mom suffer for the next fifteen months battling this you know,

109
00:05:59,200 --> 00:06:02,440
Speaker 2: horrible for me came and that just sort of grew

110
00:06:02,560 --> 00:06:07,560
Speaker 2: in me, this relentless desire to do anything and everything

111
00:06:07,600 --> 00:06:10,200
Speaker 2: I could to take down these sorts of diseases and

112
00:06:10,240 --> 00:06:13,159
Speaker 2: to alleviate suffering so people like my mom didn't have

113
00:06:13,200 --> 00:06:15,200
Speaker 2: to go through this sort of stuff. And so so

114
00:06:15,240 --> 00:06:17,200
Speaker 2: I promised her I would dedicate my life to becoming

115
00:06:17,240 --> 00:06:19,320
Speaker 2: a doctor and searching for treatments for patients like her.

116
00:06:19,400 --> 00:06:22,479
Speaker 2: She passed away a year after her diagnosis, and I

117
00:06:22,520 --> 00:06:26,039
Speaker 2: also promised her that I would create an organization in

118
00:06:26,040 --> 00:06:29,600
Speaker 2: her memory called AMF. It stood for Alien Mothers and Fathers,

119
00:06:29,640 --> 00:06:33,320
Speaker 2: and then eventually became actively moving Forward for collegens grieving

120
00:06:33,320 --> 00:06:35,239
Speaker 2: the death of a loved one and ended up scaling

121
00:06:35,240 --> 00:06:36,960
Speaker 2: that into a nonprofit and being able to help a

122
00:06:37,000 --> 00:06:40,840
Speaker 2: lot of people in her memory. But her life and

123
00:06:40,880 --> 00:06:42,520
Speaker 2: what she taught me in her life and then also

124
00:06:42,960 --> 00:06:48,600
Speaker 2: her death really drove me to the career and the

125
00:06:48,640 --> 00:06:50,120
Speaker 2: path I'm on Now that's amazing.

126
00:06:50,240 --> 00:06:54,680
Speaker 1: I'm curious about the how that grief transformed into what

127
00:06:54,720 --> 00:06:56,479
Speaker 1: were some of the steps that was it an immediate

128
00:06:56,480 --> 00:06:58,640
Speaker 1: aha moment or was there a period where you're like, Okay,

129
00:06:58,640 --> 00:07:00,359
Speaker 1: I really need to figure out how to make this

130
00:07:00,440 --> 00:07:03,120
Speaker 1: work so that I can be of service to help

131
00:07:03,120 --> 00:07:05,440
Speaker 1: in this kind of suffering or this kind of grief

132
00:07:05,440 --> 00:07:05,920
Speaker 1: for others.

133
00:07:06,560 --> 00:07:09,320
Speaker 2: It was a pretty quick aha moment. It was basically

134
00:07:09,560 --> 00:07:13,440
Speaker 2: the moment that I learned about her cancer and learned

135
00:07:13,440 --> 00:07:16,440
Speaker 2: about treatment, and learned about the horrible prognosis and sort

136
00:07:16,440 --> 00:07:20,840
Speaker 2: of wrapped my head around the number of diseases that

137
00:07:20,880 --> 00:07:23,760
Speaker 2: are out there that don't have solutions that I just thought, Wow,

138
00:07:23,960 --> 00:07:26,120
Speaker 2: what else could I possibly do in life other than this?

139
00:07:26,320 --> 00:07:28,680
Speaker 2: I mean, I can't. I couldn't fathom. As soon as

140
00:07:28,720 --> 00:07:31,679
Speaker 2: I saw her suffering, I couldn't fathom doing anything else

141
00:07:32,200 --> 00:07:34,880
Speaker 2: other than trying to alleviate this sort of suffering. And

142
00:07:36,240 --> 00:07:38,280
Speaker 2: so that was just immediate, And I mean I literally

143
00:07:38,920 --> 00:07:41,560
Speaker 2: just immediately became pre mad, immediately started taking those courses,

144
00:07:41,600 --> 00:07:43,160
Speaker 2: and like you know, I was going to go to

145
00:07:43,560 --> 00:07:47,240
Speaker 2: medical school. That was sort of a done deal. I

146
00:07:47,280 --> 00:07:51,880
Speaker 2: think that in terms of creating that nonprofit AMF, that

147
00:07:52,040 --> 00:07:54,760
Speaker 2: wasn't something I thought about until my final conversation I

148
00:07:54,760 --> 00:07:57,200
Speaker 2: had with her before she passed away. It was two

149
00:07:57,240 --> 00:08:00,000
Speaker 2: weeks before she died when I had my last conversation

150
00:08:00,160 --> 00:08:02,280
Speaker 2: with her, and I had never thought about the idea

151
00:08:02,320 --> 00:08:05,280
Speaker 2: of creating this organization in her memory. But she was

152
00:08:05,320 --> 00:08:08,680
Speaker 2: really worried about how I would be after after she passed,

153
00:08:08,800 --> 00:08:12,280
Speaker 2: and and I sort of just in the moment, just said, Mom,

154
00:08:12,280 --> 00:08:14,200
Speaker 2: I'm going to create this organization in your memory. I'm

155
00:08:14,200 --> 00:08:15,880
Speaker 2: gonna call it a MFOs or her initials. I didn't

156
00:08:15,880 --> 00:08:17,880
Speaker 2: know what it would stand for, but once I made

157
00:08:17,880 --> 00:08:20,000
Speaker 2: that promise to her, it was you know, it was

158
00:08:20,040 --> 00:08:22,560
Speaker 2: my final promise I made to her, and so I

159
00:08:22,640 --> 00:08:24,360
Speaker 2: was gonna do everything in my power to make it happen.

160
00:08:24,360 --> 00:08:27,200
Speaker 2: And it also I made the promise because I saw

161
00:08:27,240 --> 00:08:29,480
Speaker 2: how challenging it is to lose a loved one and

162
00:08:29,480 --> 00:08:32,920
Speaker 2: to grieve and suffer, you know, watch someone suffer while

163
00:08:32,960 --> 00:08:33,640
Speaker 2: you're in college.

164
00:08:33,760 --> 00:08:35,760
Speaker 1: Did this how do this feel? Did it feel like

165
00:08:35,880 --> 00:08:38,480
Speaker 1: your purpose was like this was meant to be or

166
00:08:38,520 --> 00:08:41,160
Speaker 1: did it feel like was there any kind of not

167
00:08:41,200 --> 00:08:42,720
Speaker 1: a premonition, but you know what I mean, is there

168
00:08:42,760 --> 00:08:45,280
Speaker 1: any kind of like sense of like, Okay, this this

169
00:08:45,320 --> 00:08:49,120
Speaker 1: pathway makes sense, It feels right, you know, whether it

170
00:08:49,160 --> 00:08:51,439
Speaker 1: was an idea of like this is my destiny or

171
00:08:51,440 --> 00:08:55,040
Speaker 1: whether it was just something that was that seemed to fit.

172
00:08:56,120 --> 00:08:58,120
Speaker 1: Is there anything like that with your with your thinking.

173
00:08:58,559 --> 00:09:00,320
Speaker 2: Yeah, it's a good question. I mean I think that

174
00:09:00,840 --> 00:09:04,760
Speaker 2: for one, it enabled me to keep my mom alive.

175
00:09:04,880 --> 00:09:06,719
Speaker 2: It helped them to keep her spirit alive. I mean

176
00:09:07,360 --> 00:09:10,240
Speaker 2: college students all over the country were sitting in AMF groups,

177
00:09:10,320 --> 00:09:12,240
Speaker 2: you know, leaning on one of their shoulders, crying with

178
00:09:12,280 --> 00:09:14,760
Speaker 2: one another and supporting one another, which is like really

179
00:09:14,800 --> 00:09:16,520
Speaker 2: the epitome of who my mom was. She was this

180
00:09:16,640 --> 00:09:18,920
Speaker 2: incredible supporter. It was just there for everyone. And so

181
00:09:19,240 --> 00:09:21,320
Speaker 2: I mean still to this day, there AMF chapters all

182
00:09:21,360 --> 00:09:23,520
Speaker 2: around the country, and you know, kids are supporting one

183
00:09:23,559 --> 00:09:25,840
Speaker 2: another during their toughest moments and they talk about AMF.

184
00:09:25,960 --> 00:09:28,640
Speaker 2: They have no idea that who my mom was or

185
00:09:28,720 --> 00:09:32,359
Speaker 2: any it ever even was named or after Amory Fagnbaum.

186
00:09:32,360 --> 00:09:36,600
Speaker 2: But that's a way to truly keep her spirit alive.

187
00:09:36,720 --> 00:09:38,599
Speaker 2: And so I think I loved that. I Mean I

188
00:09:38,600 --> 00:09:40,200
Speaker 2: didn't know I was doing that when I decided to

189
00:09:40,240 --> 00:09:43,040
Speaker 2: do it, but within like days of starting to build

190
00:09:43,080 --> 00:09:46,360
Speaker 2: this thing called AMF that was supporting people that it

191
00:09:46,440 --> 00:09:48,600
Speaker 2: was just like, Wow, I can keep my mom alive.

192
00:09:48,720 --> 00:09:51,240
Speaker 2: In this way is this is who she was. She's

193
00:09:51,280 --> 00:09:53,520
Speaker 2: helping you know, thousands of people all over the country

194
00:09:53,800 --> 00:09:56,040
Speaker 2: even in her death. So I think for one that

195
00:09:56,320 --> 00:09:59,520
Speaker 2: was really really powerful for me. The other is that

196
00:09:59,559 --> 00:10:05,040
Speaker 2: I learned pretty quickly that channeling my energy towards something

197
00:10:05,040 --> 00:10:08,280
Speaker 2: that was positive service to others was the best way

198
00:10:08,320 --> 00:10:10,000
Speaker 2: that I was going to grieve for death. It was

199
00:10:10,040 --> 00:10:12,680
Speaker 2: going to help me to create this thing to help

200
00:10:12,720 --> 00:10:15,640
Speaker 2: other people. That that just you know, it became super

201
00:10:15,640 --> 00:10:18,360
Speaker 2: clear again really quickly. And then the other thing too,

202
00:10:18,480 --> 00:10:21,240
Speaker 2: that I think turned this into such a focus for

203
00:10:21,320 --> 00:10:25,280
Speaker 2: me was that my mom, often during any tough time

204
00:10:25,280 --> 00:10:28,080
Speaker 2: in our lives, would tell us not just to look

205
00:10:28,120 --> 00:10:30,640
Speaker 2: for silver linings, but look to create silver linings. And

206
00:10:30,679 --> 00:10:32,520
Speaker 2: so this to me was a perfect example. You know,

207
00:10:32,600 --> 00:10:35,240
Speaker 2: looking for silver lining is saying, Okay, my mom was

208
00:10:35,280 --> 00:10:38,080
Speaker 2: really sick, and while she was sick, my sisters and

209
00:10:38,120 --> 00:10:40,920
Speaker 2: I got tighter than ever. That that's finding a silver lining,

210
00:10:40,920 --> 00:10:42,920
Speaker 2: and that that's true. That was a true silver line

211
00:10:42,920 --> 00:10:46,000
Speaker 2: that we found. But creating a silver lining was my

212
00:10:46,120 --> 00:10:49,000
Speaker 2: mom has died from brain cancer, and I'm going to

213
00:10:49,080 --> 00:10:51,280
Speaker 2: create an organization that's going to help other grieving college

214
00:10:51,280 --> 00:10:52,760
Speaker 2: students and I'm going to become a doctor to help

215
00:10:52,800 --> 00:10:54,679
Speaker 2: people like her in the future. That's it. That's creating

216
00:10:54,720 --> 00:10:57,120
Speaker 2: a silver lining. That's the kind of thing that my

217
00:10:57,160 --> 00:10:59,199
Speaker 2: mom always encouraged us to do. Don't just look for them,

218
00:10:59,200 --> 00:11:01,199
Speaker 2: but look to create that. And so I think when

219
00:11:01,200 --> 00:11:04,280
Speaker 2: you bring all those things together, it just it became

220
00:11:04,360 --> 00:11:07,120
Speaker 2: a total, you know, obsession, sort of the same way

221
00:11:07,120 --> 00:11:08,920
Speaker 2: I wanted to play college football. That's all I can

222
00:11:08,920 --> 00:11:10,600
Speaker 2: think about really for the next ten years.

223
00:11:11,120 --> 00:11:14,439
Speaker 1: I love that, that idea of creating your own solution

224
00:11:14,520 --> 00:11:17,520
Speaker 1: and creating just the impulse for creating in general. I'm

225
00:11:17,520 --> 00:11:19,640
Speaker 1: a storyteller, I'm a filmmaker. I'm not sure where all

226
00:11:19,640 --> 00:11:22,760
Speaker 1: these crazy ideas come from. Just following that creative spark

227
00:11:22,760 --> 00:11:24,920
Speaker 1: when it happens is such a is one of the

228
00:11:24,920 --> 00:11:27,640
Speaker 1: most wonderful things about living, I think. So take us

229
00:11:27,679 --> 00:11:29,280
Speaker 1: to the next steps if you would like leading up

230
00:11:29,280 --> 00:11:30,520
Speaker 1: to the next part of your story.

231
00:11:30,640 --> 00:11:33,120
Speaker 2: Yeah. So I graduated from college. I went to Oxford

232
00:11:33,120 --> 00:11:36,800
Speaker 2: for grad school to study cancer prevention, did a master's there,

233
00:11:37,360 --> 00:11:39,800
Speaker 2: came back to the States for medical school, came to

234
00:11:39,840 --> 00:11:43,600
Speaker 2: the University of Pennsylvania for med school, and very much

235
00:11:43,720 --> 00:11:45,920
Speaker 2: you know, marching down that path. I made this promise

236
00:11:45,960 --> 00:11:47,400
Speaker 2: to my mom, I'm going to become a doctor. I'm

237
00:11:47,400 --> 00:11:50,000
Speaker 2: going to help people like her continue to grow. AMF.

238
00:11:50,040 --> 00:11:52,840
Speaker 2: We were reaching thousands of college ins all over the

239
00:11:52,840 --> 00:11:57,439
Speaker 2: country through Greef support networks and also through community service activities,

240
00:11:57,440 --> 00:11:59,600
Speaker 2: and it was, you know, we were keeping my mom

241
00:11:59,640 --> 00:12:01,920
Speaker 2: alive is as I mentioned, sort of her spirit alive

242
00:12:01,960 --> 00:12:07,240
Speaker 2: through MF. And then right around the time of my

243
00:12:07,480 --> 00:12:09,520
Speaker 2: third year, started third year of medical school, so I

244
00:12:09,520 --> 00:12:12,840
Speaker 2: was twenty five years old. I'd actually just delivered my

245
00:12:12,840 --> 00:12:15,600
Speaker 2: first baby on my obgyn rotation, which in medical school,

246
00:12:15,600 --> 00:12:18,400
Speaker 2: delivering babies is sort of a pretty pinnacle moment, right

247
00:12:18,679 --> 00:12:22,840
Speaker 2: to bring life into the world. And right around that time,

248
00:12:22,880 --> 00:12:25,439
Speaker 2: within a couple of weeks, I started feeling more tired

249
00:12:25,440 --> 00:12:28,360
Speaker 2: than it ever felt before. And I had always worked

250
00:12:28,400 --> 00:12:30,920
Speaker 2: insane hours and sort of never slept, and that was

251
00:12:30,960 --> 00:12:34,400
Speaker 2: just sort of who I was. But I was so,

252
00:12:34,400 --> 00:12:37,040
Speaker 2: so so tired, and I was noticing these in large

253
00:12:37,080 --> 00:12:40,079
Speaker 2: lymptods of my neck, I was noticing fluid of my ankles,

254
00:12:40,120 --> 00:12:43,080
Speaker 2: and I just felt more unwell than I'd ever felt before.

255
00:12:43,160 --> 00:12:45,360
Speaker 2: So I made it to a medical school exam on

256
00:12:45,440 --> 00:12:47,440
Speaker 2: that Friday, and then I went straight from the exam

257
00:12:47,520 --> 00:12:50,679
Speaker 2: to the er where my doctors ran a number of

258
00:12:50,760 --> 00:12:54,319
Speaker 2: tests and they told me, David, your liver, your kidneys,

259
00:12:54,320 --> 00:12:56,640
Speaker 2: and your bone marrow or shutting down. And we don't

260
00:12:56,679 --> 00:12:58,520
Speaker 2: know why. We had to hospelas you right now, and

261
00:12:58,559 --> 00:13:00,440
Speaker 2: so they hosplize me right away. Within a couple days,

262
00:13:00,440 --> 00:13:03,760
Speaker 2: I was in ICU I all with no diagnosis. I

263
00:13:03,760 --> 00:13:05,839
Speaker 2: had a retinal hemorrhge. It made me temporarily blind in

264
00:13:05,880 --> 00:13:08,440
Speaker 2: my left eye, gained about one hundred pounds of fluid

265
00:13:08,440 --> 00:13:10,360
Speaker 2: because my liver and my kidneys weren't working and I

266
00:13:10,400 --> 00:13:15,040
Speaker 2: needed daily transfusions is to keep me alive. Again, no diagnosis.

267
00:13:15,040 --> 00:13:16,720
Speaker 2: We didn't know what was killing me, but but it

268
00:13:16,760 --> 00:13:17,760
Speaker 2: was clear that I was dying.

269
00:13:18,440 --> 00:13:20,960
Speaker 1: What was the illness? What was the diagnosis? When you

270
00:13:20,960 --> 00:13:23,400
Speaker 1: finally found that out? And how did that affect you?

271
00:13:24,000 --> 00:13:25,800
Speaker 2: So about eleven weeks in, when I was at my

272
00:13:25,960 --> 00:13:28,559
Speaker 2: lowest point, sort of you know, truly out of options,

273
00:13:29,880 --> 00:13:31,880
Speaker 2: was when I finally got the diagnosis. If a disease

274
00:13:31,920 --> 00:13:35,400
Speaker 2: called idiopathic multi center Castleman's. It's a disease where your

275
00:13:35,400 --> 00:13:37,800
Speaker 2: immune system attacks your vital organs. It shuts them down

276
00:13:37,840 --> 00:13:41,960
Speaker 2: until you die. It's relentless unless you use chemotherapy to

277
00:13:41,960 --> 00:13:44,160
Speaker 2: try to turn it around or stop it. But even

278
00:13:44,200 --> 00:13:47,800
Speaker 2: when you give chemo, you typically relapse. So my doctors

279
00:13:47,800 --> 00:13:49,040
Speaker 2: gave me a bunch of chemo. You know, I got

280
00:13:49,080 --> 00:13:50,960
Speaker 2: the diagnosis sort of just in time. You know, I

281
00:13:51,000 --> 00:13:52,520
Speaker 2: certainly would have died if it had been a day

282
00:13:52,600 --> 00:13:55,520
Speaker 2: or two later, but got it just in time. Got

283
00:13:55,559 --> 00:13:58,880
Speaker 2: a combination of seven different chemotherapies that were made for

284
00:13:59,240 --> 00:14:02,240
Speaker 2: multi My loan went for lymphoma. They weren't made for castlemans,

285
00:14:03,000 --> 00:14:04,720
Speaker 2: and really just this sort of last ditch effort, like

286
00:14:04,720 --> 00:14:07,319
Speaker 2: can we just try something to save him? And they

287
00:14:07,360 --> 00:14:10,040
Speaker 2: worked and I survived, but then I started having a

288
00:14:10,120 --> 00:14:13,560
Speaker 2: number of relapses, and unfortunately that was just the beginning.

289
00:14:13,840 --> 00:14:16,920
Speaker 1: What was the just out of total curiosity, what was

290
00:14:16,960 --> 00:14:22,520
Speaker 1: the mechanism by which the chemotherapy affected the disease, Like

291
00:14:22,640 --> 00:14:23,920
Speaker 1: what was happening with your tissues?

292
00:14:23,920 --> 00:14:24,560
Speaker 2: To do you do?

293
00:14:24,640 --> 00:14:26,280
Speaker 1: You know it was triggering it in the first place,

294
00:14:27,120 --> 00:14:28,200
Speaker 1: So idiopathic.

295
00:14:28,200 --> 00:14:30,680
Speaker 2: While to send your castle disease, we call it idiopathic,

296
00:14:30,800 --> 00:14:33,440
Speaker 2: it means unknown cause we don't know what triggers it.

297
00:14:33,520 --> 00:14:37,200
Speaker 2: So basically, your immune system destroys your vital organs and

298
00:14:37,560 --> 00:14:41,080
Speaker 2: with no understanding for what's happening or why. But the

299
00:14:41,120 --> 00:14:44,840
Speaker 2: reason the chemotherapy is used is because your immune system

300
00:14:44,880 --> 00:14:47,840
Speaker 2: is going crazy and it's killing everything. What is a

301
00:14:47,880 --> 00:14:49,920
Speaker 2: medicine that is really good a killing the immune systems?

302
00:14:49,920 --> 00:14:52,560
Speaker 2: Actually chemotherapy. You know, we think about that as a

303
00:14:52,600 --> 00:14:54,720
Speaker 2: side effect in cancer, and you try to kill cancer

304
00:14:55,440 --> 00:14:57,520
Speaker 2: as a side effect, you destroy the immune system because

305
00:14:57,520 --> 00:15:01,200
Speaker 2: immune cells are rapidly proliferating just like cancers. Well, if

306
00:15:01,240 --> 00:15:04,200
Speaker 2: you give the worst chemotherapy at the highest possible doses,

307
00:15:04,600 --> 00:15:07,360
Speaker 2: you destroy the immune system. And the dis immune system

308
00:15:07,400 --> 00:15:09,400
Speaker 2: is destroying me. And so that was a good thing.

309
00:15:09,440 --> 00:15:11,960
Speaker 2: So we destroyed my immune system and that saved my life.

310
00:15:12,560 --> 00:15:18,000
Speaker 1: Oh man, that's I can't imagine what that would have

311
00:15:18,040 --> 00:15:20,120
Speaker 1: been like to go through. So you're sort of at

312
00:15:20,120 --> 00:15:26,240
Speaker 1: death store. You're like, let's try whatever worthing, and it

313
00:15:26,360 --> 00:15:28,600
Speaker 1: happened to put you into remission.

314
00:15:29,280 --> 00:15:29,520
Speaker 2: Yep.

315
00:15:30,040 --> 00:15:31,720
Speaker 1: Wow, that's stunning.

316
00:15:31,760 --> 00:15:34,400
Speaker 2: And before the it was tried was when I was

317
00:15:34,480 --> 00:15:37,200
Speaker 2: at my lowest and I had my last rights right

318
00:15:37,280 --> 00:15:40,600
Speaker 2: to me in November of twenty ten. So my doctors

319
00:15:40,640 --> 00:15:43,440
Speaker 2: told my family, told me friends, this is it. He's

320
00:15:43,480 --> 00:15:47,040
Speaker 2: not going to make it and priests came and read

321
00:15:47,080 --> 00:15:49,040
Speaker 2: me my last right, I said goodbye to my family.

322
00:15:49,560 --> 00:15:50,080
Speaker 2: It was horrible.

323
00:15:50,120 --> 00:15:51,800
Speaker 1: Can I can I explore that a little bit with you?

324
00:15:52,000 --> 00:15:55,640
Speaker 1: Of course, It's just just curious, like what that process

325
00:15:55,800 --> 00:15:58,000
Speaker 1: is of looking at death store and knowing that you

326
00:15:58,040 --> 00:15:59,880
Speaker 1: only have a day or two left. What were some

327
00:16:00,120 --> 00:16:03,600
Speaker 1: the things that were going through your mind and relative

328
00:16:03,680 --> 00:16:06,960
Speaker 1: to like saying you're goodbye to your family, or the

329
00:16:07,040 --> 00:16:09,440
Speaker 1: idea that you would wanted to leave this legacy, you know,

330
00:16:10,160 --> 00:16:14,040
Speaker 1: in your mom's name, and you know you probably the

331
00:16:14,040 --> 00:16:16,800
Speaker 1: heartbreak of that, But just just walk us through some

332
00:16:16,840 --> 00:16:18,960
Speaker 1: of what that psychology is, Like, how do you how

333
00:16:19,000 --> 00:16:21,320
Speaker 1: do you even deal with with that view?

334
00:16:21,720 --> 00:16:24,040
Speaker 2: Yeah, I mean it was it was so difficult. It

335
00:16:24,080 --> 00:16:27,520
Speaker 2: was I I was just used a heartbreak. I mean

336
00:16:27,560 --> 00:16:30,240
Speaker 2: I was just heartbroken that I wasn't going to be

337
00:16:30,240 --> 00:16:32,880
Speaker 2: able to help these patients. And remember my mom, I

338
00:16:32,920 --> 00:16:35,440
Speaker 2: promised her I would do it. I was heartbroken that

339
00:16:35,480 --> 00:16:36,720
Speaker 2: I wasn't going to be able to spend more time

340
00:16:36,760 --> 00:16:39,760
Speaker 2: with my family and my friends I just adored so much.

341
00:16:40,080 --> 00:16:43,360
Speaker 2: I had this amazing girlfriend, Caitlin, that I wanted to

342
00:16:43,360 --> 00:16:45,240
Speaker 2: have a family with. One day, I was heartbroken I

343
00:16:45,240 --> 00:16:51,560
Speaker 2: wouldn't be able to do that. And I just it's

344
00:16:51,600 --> 00:16:53,680
Speaker 2: hard even to put into words what that film was like.

345
00:16:53,720 --> 00:16:56,840
Speaker 2: It just it just didn't feel like it was fair.

346
00:16:56,920 --> 00:16:58,560
Speaker 2: It was just sort of like, but there's all these

347
00:16:58,560 --> 00:17:00,240
Speaker 2: other things I want to do to help you, well,

348
00:17:00,280 --> 00:17:02,400
Speaker 2: like I just like, give me some more time. I

349
00:17:02,400 --> 00:17:04,840
Speaker 2: just want to help some people, like as you know.

350
00:17:05,000 --> 00:17:08,160
Speaker 2: And I was just so so sad that I wasn't

351
00:17:08,160 --> 00:17:13,080
Speaker 2: going to have more time. And I also should mention

352
00:17:13,200 --> 00:17:16,080
Speaker 2: that because my liver and my kidneys weren't working, I

353
00:17:16,119 --> 00:17:19,200
Speaker 2: also didn't have like my full sort of brain functioning.

354
00:17:19,280 --> 00:17:21,719
Speaker 2: I was, I was, you know, really unwell, and so

355
00:17:22,560 --> 00:17:24,480
Speaker 2: I wasn't really I don't think I was able to

356
00:17:24,480 --> 00:17:26,879
Speaker 2: go to the depth of sort of like critical thinking

357
00:17:26,920 --> 00:17:29,119
Speaker 2: and maybe even exploration that I would have gone to

358
00:17:29,280 --> 00:17:32,119
Speaker 2: if if I wasn't so sick. But but you know,

359
00:17:32,160 --> 00:17:34,520
Speaker 2: your liver and your kidneys play critical roles in filtering

360
00:17:34,520 --> 00:17:36,880
Speaker 2: out toxins from your blood, and so I was sort

361
00:17:36,920 --> 00:17:39,040
Speaker 2: of as toxic as you could get in the sense

362
00:17:39,040 --> 00:17:41,360
Speaker 2: that I just and my brain wasn't working particularly well.

363
00:17:41,480 --> 00:17:43,680
Speaker 2: So there was just a lot of sadness, a lot

364
00:17:43,720 --> 00:17:47,480
Speaker 2: of a lot of grief that that I wasn't gonna

365
00:17:47,600 --> 00:17:48,679
Speaker 2: do all the things I wanted to do.

366
00:17:49,160 --> 00:17:53,360
Speaker 1: Did did any other emotions occur? Like anger or were

367
00:17:53,359 --> 00:17:55,840
Speaker 1: you frustrated or were you just sort of too sort

368
00:17:55,880 --> 00:17:57,879
Speaker 1: of diminished to even you know?

369
00:17:58,160 --> 00:18:01,000
Speaker 2: I was. It was one hundred percent sad, zero percent anger.

370
00:18:01,040 --> 00:18:03,920
Speaker 2: And and that's probably partly personality. I mean, I think

371
00:18:03,920 --> 00:18:06,960
Speaker 2: that you know, all of us probably bring our whatever

372
00:18:07,040 --> 00:18:09,680
Speaker 2: our personality is, is probably going to get amplified when

373
00:18:09,720 --> 00:18:12,359
Speaker 2: you face death. And so I think you sort of

374
00:18:12,359 --> 00:18:14,359
Speaker 2: really get to know who you are when when you

375
00:18:14,400 --> 00:18:17,200
Speaker 2: strip everything else away, and like you know, what's your

376
00:18:17,359 --> 00:18:20,040
Speaker 2: sort of default mode, what's your like you know what

377
00:18:20,160 --> 00:18:23,320
Speaker 2: happens when when when the when the cards are against you,

378
00:18:23,320 --> 00:18:25,320
Speaker 2: because you know there's no scenario where the cards are

379
00:18:25,359 --> 00:18:27,560
Speaker 2: more against you than you know, when doctors are telling

380
00:18:27,560 --> 00:18:29,080
Speaker 2: you you're going to die in the next twenty four

381
00:18:29,119 --> 00:18:31,199
Speaker 2: or forty hours. So I think that, I mean, for me,

382
00:18:31,240 --> 00:18:32,919
Speaker 2: and it sort of uncovered me, like it was one

383
00:18:33,000 --> 00:18:36,760
Speaker 2: hundred percent sad and a zero percent anger. Uh. But

384
00:18:36,800 --> 00:18:39,480
Speaker 2: then there was a really big another emotion that happened

385
00:18:39,640 --> 00:18:41,399
Speaker 2: a few days later, and that's that, you know, I

386
00:18:41,400 --> 00:18:44,080
Speaker 2: got all this chemotherapy and then I started to wake

387
00:18:44,160 --> 00:18:48,800
Speaker 2: up and uh, you know what's the inverse of sadness. Well,

388
00:18:48,840 --> 00:18:52,199
Speaker 2: it was just just pure joy and gratitude, right, it

389
00:18:52,280 --> 00:18:54,680
Speaker 2: was like, oh my gosh, like I'm going to get

390
00:18:54,680 --> 00:18:56,560
Speaker 2: another day. I don't know how much longer I'm gonna get,

391
00:18:56,560 --> 00:18:59,320
Speaker 2: but I'm getting something, and boy is this something awesome.

392
00:18:59,359 --> 00:19:02,239
Speaker 2: And I mean, like I remember, like you know, I

393
00:19:02,280 --> 00:19:04,400
Speaker 2: was in the hospital for a few more weeks after

394
00:19:04,440 --> 00:19:06,119
Speaker 2: started getting better, finally got out of the hospital. I

395
00:19:06,119 --> 00:19:09,080
Speaker 2: remember the first night I was home and I was

396
00:19:09,080 --> 00:19:10,920
Speaker 2: at my I was with my dad and my sisters,

397
00:19:11,119 --> 00:19:15,120
Speaker 2: and I went to set the table and I remember

398
00:19:16,080 --> 00:19:19,960
Speaker 2: the I remember setting the table with such intention and

399
00:19:20,000 --> 00:19:22,040
Speaker 2: such pride. I was like, I'm first off, I'm just

400
00:19:22,080 --> 00:19:25,199
Speaker 2: I'm walking, which is amazing, Like that's incredible. Second, I'm

401
00:19:25,240 --> 00:19:27,640
Speaker 2: not in the hospital. And third I'm alive and I'm

402
00:19:27,640 --> 00:19:29,000
Speaker 2: not you know, I don't know how much longer it's

403
00:19:29,040 --> 00:19:31,200
Speaker 2: going to be, but like I'm gonna set this table

404
00:19:31,240 --> 00:19:34,320
Speaker 2: better than anyone's ever set a table before it, because

405
00:19:34,359 --> 00:19:36,120
Speaker 2: like this is awesome. I get to set the table

406
00:19:36,160 --> 00:19:38,720
Speaker 2: and I just remember like placing these napkins and being

407
00:19:39,240 --> 00:19:42,600
Speaker 2: so thankful that I could place these napkins on a

408
00:19:42,640 --> 00:19:44,560
Speaker 2: table so I could have a meal with my family,

409
00:19:44,840 --> 00:19:46,720
Speaker 2: right right, That.

410
00:19:46,760 --> 00:19:49,639
Speaker 1: Makes a lot of sense. I've suffered some grief in

411
00:19:49,680 --> 00:19:52,000
Speaker 1: my life, and I've lost some some very special people

412
00:19:52,000 --> 00:19:54,200
Speaker 1: that were very near and dear to me, and and

413
00:19:54,920 --> 00:19:58,080
Speaker 1: sort of it's it's I keep that close to me,

414
00:19:58,640 --> 00:20:00,359
Speaker 1: not so I could be in a morbid space, but

415
00:20:00,480 --> 00:20:03,680
Speaker 1: just so that you know, when i'm you know, put

416
00:20:03,680 --> 00:20:05,439
Speaker 1: my fund away, when the kids come home, put the

417
00:20:05,440 --> 00:20:09,040
Speaker 1: computers away home. It's just like respect for that moment

418
00:20:09,080 --> 00:20:11,399
Speaker 1: and gratitude for that moment. We were lucky enough to

419
00:20:11,400 --> 00:20:14,520
Speaker 1: speak with Aaron Ralston. He's the subject of that film

420
00:20:14,600 --> 00:20:17,880
Speaker 1: one hundred and twenty seven Hours, the guy, the man

421
00:20:17,920 --> 00:20:21,879
Speaker 1: who was stuck in Moab and he rock fell and

422
00:20:21,920 --> 00:20:23,879
Speaker 1: crushed his arm and he had to eventually, after six

423
00:20:24,000 --> 00:20:27,639
Speaker 1: days with no food and water. Pretty miraculous, he figured

424
00:20:27,640 --> 00:20:30,439
Speaker 1: out how he could amputate his arm in order to

425
00:20:30,520 --> 00:20:34,440
Speaker 1: possibly survive. Wow. But he before that happened, he had

426
00:20:34,520 --> 00:20:37,000
Speaker 1: hit a moment where he was like, Okay, this is it.

427
00:20:38,000 --> 00:20:40,800
Speaker 1: I'm not going to make it. And he had a

428
00:20:41,240 --> 00:20:44,800
Speaker 1: you know, a video with him of camcorder and so

429
00:20:44,840 --> 00:20:47,639
Speaker 1: he hit recordings, just started to say thank you to

430
00:20:47,680 --> 00:20:51,199
Speaker 1: everybody he had loved, his family, adviyes and everything. But

431
00:20:51,280 --> 00:20:55,960
Speaker 1: he said this remarkable thing. He said, it's impossible to

432
00:20:56,119 --> 00:21:00,359
Speaker 1: experience gratitude or he said, it's impossible to hold gratitude, dude,

433
00:21:00,560 --> 00:21:04,200
Speaker 1: and despair simultaneously. And he went on. He went further

434
00:21:04,240 --> 00:21:06,720
Speaker 1: to say, it's even a brain, a neurological thing, like

435
00:21:06,760 --> 00:21:10,159
Speaker 1: you're Amigdala, shuts down when you're in a state of gratitude,

436
00:21:10,280 --> 00:21:13,040
Speaker 1: so that it's not even possible to have that that

437
00:21:13,080 --> 00:21:16,359
Speaker 1: despair and vice versa. When you're in a state of despair,

438
00:21:16,400 --> 00:21:18,840
Speaker 1: the lights which goes the other way, and it's impossible

439
00:21:18,840 --> 00:21:21,240
Speaker 1: to be in a place of gratitude. And I always

440
00:21:21,240 --> 00:21:22,560
Speaker 1: thought that was miraculous.

441
00:21:22,840 --> 00:21:24,520
Speaker 2: Yeah, I agree, I mean, and that's that's why I

442
00:21:24,600 --> 00:21:27,080
Speaker 2: described it as the inverse of you know, inverse of

443
00:21:27,359 --> 00:21:28,880
Speaker 2: I mean, and that was just sort of the first

444
00:21:28,920 --> 00:21:31,080
Speaker 2: and human mind because for me, it was just totally

445
00:21:31,080 --> 00:21:34,120
Speaker 2: black and white, right, it's you know, it's just grief

446
00:21:34,280 --> 00:21:36,680
Speaker 2: and sadness and mourning. And you know, to your point

447
00:21:36,680 --> 00:21:39,600
Speaker 2: around the loss of loved ones, you know that you've

448
00:21:39,600 --> 00:21:44,080
Speaker 2: had over the years preparing to die, is now grieving

449
00:21:44,359 --> 00:21:47,320
Speaker 2: every single loved one that you have that you're not

450
00:21:47,359 --> 00:21:49,000
Speaker 2: going to be with them, so it's every one in

451
00:21:49,000 --> 00:21:52,840
Speaker 2: the world all at once, and that that is just

452
00:21:53,040 --> 00:21:56,600
Speaker 2: heartbreaking and devastating because you're now grieving, you're losing to

453
00:21:56,640 --> 00:22:00,080
Speaker 2: all of them at once because you're going to be gone.

454
00:22:00,160 --> 00:22:02,439
Speaker 2: And then to the other point is then that the

455
00:22:02,560 --> 00:22:06,040
Speaker 2: switch just completely flips when in my case, when the

456
00:22:06,119 --> 00:22:09,040
Speaker 2: chemotherapy kicks in and all of a sudden, I start

457
00:22:09,080 --> 00:22:12,320
Speaker 2: waking up and I'm like, oh my gosh, I'm want

458
00:22:12,320 --> 00:22:15,720
Speaker 2: to get some more time here, and and it just

459
00:22:15,720 --> 00:22:18,399
Speaker 2: just such gratitude. And people do often ask like, you know,

460
00:22:18,960 --> 00:22:22,040
Speaker 2: weren't you like mad that you went through this and

461
00:22:22,080 --> 00:22:24,679
Speaker 2: still holding on to feelings, And I was like, absolutely not.

462
00:22:25,440 --> 00:22:28,040
Speaker 2: I mean, for me, it was just like, oh my gosh,

463
00:22:28,080 --> 00:22:31,040
Speaker 2: I've got some more time. There's no time, there's no

464
00:22:31,080 --> 00:22:33,480
Speaker 2: reason to waste time or energy on anything other than

465
00:22:33,520 --> 00:22:36,439
Speaker 2: just gratitude and positivity and like making the most of

466
00:22:36,480 --> 00:22:39,240
Speaker 2: every moment. And I think, again everyone's different, and everyone

467
00:22:39,359 --> 00:22:40,960
Speaker 2: sort of, like I think, gets broken down to their

468
00:22:41,040 --> 00:22:45,000
Speaker 2: fundamental elements in these sorts of scenarios. But for me,

469
00:22:45,080 --> 00:22:47,639
Speaker 2: it was there was no anything other than just gratitude

470
00:22:47,680 --> 00:22:49,919
Speaker 2: and thanks, thankfulness, well.

471
00:22:49,800 --> 00:22:53,360
Speaker 1: Tax ut to the next step, so you know you

472
00:22:53,440 --> 00:22:57,600
Speaker 1: hit then after that apparently a roller coaster of remissions

473
00:22:57,640 --> 00:23:02,040
Speaker 1: and getting better and then remissions. But yeah, just if

474
00:23:02,040 --> 00:23:03,439
Speaker 1: you could continue to do your story.

475
00:23:04,080 --> 00:23:06,280
Speaker 2: Sure, So yeah, I got out of the hospital and

476
00:23:06,280 --> 00:23:08,320
Speaker 2: then about a month later I was back in the hospital.

477
00:23:08,359 --> 00:23:11,080
Speaker 2: Spend another this time seven weeks in ice. You in

478
00:23:11,119 --> 00:23:16,200
Speaker 2: critical condition again, you know, doctors didn't think I would survive. Again.

479
00:23:16,280 --> 00:23:20,199
Speaker 2: I got multiple chemotherapy agents. Again they worked, but it

480
00:23:20,240 --> 00:23:21,639
Speaker 2: was again one of these things where it was like

481
00:23:22,640 --> 00:23:24,280
Speaker 2: no one thought it was going to at work, and

482
00:23:25,280 --> 00:23:28,119
Speaker 2: I was so cool when when they started to work.

483
00:23:28,920 --> 00:23:32,200
Speaker 2: But when you add up that first about six months

484
00:23:32,240 --> 00:23:36,160
Speaker 2: after my diagnosis, from August through February, I spent nearly

485
00:23:36,160 --> 00:23:38,760
Speaker 2: that entire time hospitalized, and most of that time in

486
00:23:38,760 --> 00:23:40,960
Speaker 2: a critical state where I could have died at any time.

487
00:23:41,000 --> 00:23:42,800
Speaker 2: There were three moments where it was very clear I

488
00:23:42,840 --> 00:23:45,480
Speaker 2: was going to die, and where I actually said goodbye

489
00:23:45,560 --> 00:23:47,520
Speaker 2: to my loved ones. But you know, at any point

490
00:23:47,520 --> 00:23:51,080
Speaker 2: over the six months I could have died. And getting

491
00:23:51,119 --> 00:23:53,119
Speaker 2: out of the hospital after that six month period, I

492
00:23:53,160 --> 00:23:55,760
Speaker 2: was put on an experimental drug that used the word

493
00:23:55,800 --> 00:23:58,800
Speaker 2: hope earlier gave me tremendous hope because I heard there

494
00:23:58,800 --> 00:24:01,320
Speaker 2: were other people with my disease that had gotten on

495
00:24:01,359 --> 00:24:03,199
Speaker 2: this drug and that it had helped them, And so

496
00:24:04,440 --> 00:24:07,160
Speaker 2: I left the hospital with lots of hope for the future.

497
00:24:08,080 --> 00:24:10,359
Speaker 2: I also left the hospital reflecting on sort of what

498
00:24:10,400 --> 00:24:13,000
Speaker 2: helped me get through it, and I think that there

499
00:24:13,000 --> 00:24:15,359
Speaker 2: were three things that were sort of the key ingredients

500
00:24:15,400 --> 00:24:17,720
Speaker 2: to get through that six month period. So the first

501
00:24:17,840 --> 00:24:20,919
Speaker 2: is that I spent most of that time thinking about

502
00:24:20,960 --> 00:24:23,639
Speaker 2: the future that I wanted, which was a family with

503
00:24:23,680 --> 00:24:27,320
Speaker 2: my girlfriend Caitlin, and a career dedicated to finding treatments

504
00:24:27,320 --> 00:24:29,520
Speaker 2: in memory of my mom. I just stayed focused on

505
00:24:29,560 --> 00:24:31,320
Speaker 2: those are the two things I wanted. I could envision it,

506
00:24:31,359 --> 00:24:33,280
Speaker 2: I can imagine it, no matter how much pain that

507
00:24:33,359 --> 00:24:36,119
Speaker 2: was going through. I kept picturing that thing that I

508
00:24:36,160 --> 00:24:39,160
Speaker 2: was looking towards. The second thing is that I had

509
00:24:39,280 --> 00:24:41,600
Speaker 2: incredible support around me. So my dad and my sister's

510
00:24:41,880 --> 00:24:45,520
Speaker 2: really never left my side. There wasn't probably more than

511
00:24:45,680 --> 00:24:48,840
Speaker 2: a few minutes over that six month period where either

512
00:24:48,920 --> 00:24:51,119
Speaker 2: my dad or my sisters weren't in the room with me.

513
00:24:51,440 --> 00:24:53,880
Speaker 2: I mean, that's incredible, right. That support I needed by

514
00:24:53,920 --> 00:24:56,320
Speaker 2: my side was essential. They were supporting me. They were

515
00:24:56,400 --> 00:24:59,840
Speaker 2: encouraging me, even encouraging me to breathe. At one stage

516
00:25:00,040 --> 00:25:02,440
Speaker 2: I was I was sort of getting ready to let go.

517
00:25:03,000 --> 00:25:04,840
Speaker 2: And then the third was to really take things one

518
00:25:04,840 --> 00:25:07,960
Speaker 2: step at a time, and it was it was truly

519
00:25:08,000 --> 00:25:10,040
Speaker 2: like one breath at a time. Every breath hurt because

520
00:25:10,040 --> 00:25:12,960
Speaker 2: of all the fluid in my lungs, but I needed

521
00:25:12,960 --> 00:25:14,679
Speaker 2: to keep breathing if I wanted to survive. And so

522
00:25:14,720 --> 00:25:16,240
Speaker 2: it's sort of like one at a time. And it

523
00:25:16,280 --> 00:25:18,120
Speaker 2: could if if at the beginning you'd have been like David,

524
00:25:18,119 --> 00:25:21,520
Speaker 2: you're going to suffer the worst pain and organ dysfunction,

525
00:25:21,840 --> 00:25:23,359
Speaker 2: and it's going to be horrible, and it's gonna be

526
00:25:23,440 --> 00:25:25,679
Speaker 2: six months long. I couldn't have put up with that.

527
00:25:25,720 --> 00:25:27,840
Speaker 2: I couldn't have I couldn't have handled that if mentally

528
00:25:28,320 --> 00:25:30,240
Speaker 2: I knew it was going to be six months. But

529
00:25:30,280 --> 00:25:32,600
Speaker 2: I could handle one breath, and I could handle, you know,

530
00:25:32,800 --> 00:25:35,240
Speaker 2: twenty breaths a minute. I could handle, you know, one

531
00:25:35,280 --> 00:25:37,159
Speaker 2: hour at a time, and maybe maybe i'd keep an

532
00:25:37,160 --> 00:25:39,119
Speaker 2: ad up to one day at a time, and the

533
00:25:39,240 --> 00:25:41,600
Speaker 2: days stacked and and so by the end of it,

534
00:25:41,640 --> 00:25:44,040
Speaker 2: I made it through. But but I really found that

535
00:25:44,080 --> 00:25:45,560
Speaker 2: those things were essential.

536
00:25:45,840 --> 00:25:49,760
Speaker 1: I am another guy that we have had on our

537
00:25:49,800 --> 00:25:53,280
Speaker 1: show in a wonderful interview with a polar explorer named

538
00:25:53,359 --> 00:25:58,600
Speaker 1: Eric Larson. Eric had been through many, many polar expeditions.

539
00:25:58,960 --> 00:26:01,040
Speaker 1: He's I think he's no for being the last guy

540
00:26:01,080 --> 00:26:03,800
Speaker 1: to be able to physically walk one of the poles,

541
00:26:03,800 --> 00:26:05,640
Speaker 1: but now that the ice is melting so much, it's

542
00:26:05,680 --> 00:26:08,360
Speaker 1: not something you can do any wow. But he's he's

543
00:26:08,400 --> 00:26:10,800
Speaker 1: suffered so much. He's, you know, been face to face

544
00:26:10,880 --> 00:26:13,760
Speaker 1: with polar bears, and he's he's dealt with so much

545
00:26:14,720 --> 00:26:17,639
Speaker 1: survival stuff out there. And then at some point he

546
00:26:17,680 --> 00:26:20,879
Speaker 1: was diagnosed with stage four colorectal cancer, and so we

547
00:26:20,960 --> 00:26:23,119
Speaker 1: interviewed him to talk to him about how maybe some

548
00:26:23,160 --> 00:26:25,080
Speaker 1: of the things he had learned out on his polar

549
00:26:25,080 --> 00:26:29,040
Speaker 1: expeditions where he had reached places where there was literally

550
00:26:29,080 --> 00:26:31,240
Speaker 1: you would go for thirty days and there was no survival,

551
00:26:31,280 --> 00:26:33,119
Speaker 1: like if you got hurt or injured, there was no

552
00:26:33,280 --> 00:26:35,240
Speaker 1: rescue for thirty days. And he had been out there,

553
00:26:35,520 --> 00:26:38,879
Speaker 1: and so, you know, he said a lot of stuff

554
00:26:38,920 --> 00:26:42,200
Speaker 1: that was really that I still try to hold onto

555
00:26:42,320 --> 00:26:45,320
Speaker 1: today after having talked to him, one of which was

556
00:26:45,359 --> 00:26:47,800
Speaker 1: like small steps, break it up. You have to break

557
00:26:47,840 --> 00:26:50,000
Speaker 1: it up into the smallest component, don't look at the

558
00:26:50,040 --> 00:26:54,200
Speaker 1: whole picture. You know, consistency is the most important thing.

559
00:26:55,240 --> 00:26:57,680
Speaker 1: And he also said this crazy thing that I thought,

560
00:26:58,000 --> 00:27:01,080
Speaker 1: you know, it kind of maybe a lookable to your story,

561
00:27:01,080 --> 00:27:03,080
Speaker 1: But he said that the best way to succeed is

562
00:27:03,160 --> 00:27:06,119
Speaker 1: not to have any other choice. Having to plan b

563
00:27:06,240 --> 00:27:09,400
Speaker 1: sharpens everything. And he said, when it's truly life and death,

564
00:27:09,880 --> 00:27:12,720
Speaker 1: you eliminate the option of quitting, and that's when people

565
00:27:12,760 --> 00:27:16,480
Speaker 1: perform at their highest level. I thought, I mean, that's

566
00:27:16,480 --> 00:27:18,560
Speaker 1: a you know, we don't want to ever be at

567
00:27:18,600 --> 00:27:21,479
Speaker 1: that place. But I wondered if that was applicable to you,

568
00:27:21,520 --> 00:27:24,040
Speaker 1: if at some point you you were like, Okay, I

569
00:27:24,119 --> 00:27:28,320
Speaker 1: have no other option here, and how that motivated you? Sure, yeah,

570
00:27:28,320 --> 00:27:30,120
Speaker 1: I mean this this You know that that comment really

571
00:27:30,119 --> 00:27:32,920
Speaker 1: resonates with me. I'll share a quick comment and then

572
00:27:33,040 --> 00:27:35,080
Speaker 1: and then to turn to the next part of the story.

573
00:27:35,480 --> 00:27:37,440
Speaker 1: You know, Ever since that first time I almost died,

574
00:27:37,640 --> 00:27:41,479
Speaker 1: the closest feeling to what life is like now that

575
00:27:41,520 --> 00:27:44,000
Speaker 1: I've had in my life is actually a sense of

576
00:27:44,080 --> 00:27:46,760
Speaker 1: overtime and a sporting event. So like when I played football,

577
00:27:47,080 --> 00:27:48,760
Speaker 1: and you know, Georgetown, we lost a lot of games

578
00:27:48,760 --> 00:27:51,080
Speaker 1: but every once in while we want overtime, and uh,

579
00:27:51,280 --> 00:27:54,680
Speaker 1: in overtime of a sporting event, the clock's ticking down,

580
00:27:55,440 --> 00:27:56,919
Speaker 1: and that can be that can.

581
00:27:56,800 --> 00:27:58,800
Speaker 2: Create fear for a lot of people. It's like scary,

582
00:27:58,920 --> 00:28:00,680
Speaker 2: like you make a mistake the game over, you know,

583
00:28:00,720 --> 00:28:02,640
Speaker 2: there's a short, short amount of time. Yeah, but can

584
00:28:02,760 --> 00:28:07,240
Speaker 2: also create tremendous clarity because the clock sticking down, there

585
00:28:07,359 --> 00:28:10,000
Speaker 2: is no room for error. You have to be completely

586
00:28:10,040 --> 00:28:11,719
Speaker 2: locked in and focused and you got to make the

587
00:28:11,720 --> 00:28:14,600
Speaker 2: most of every second. And so for me, I've felt

588
00:28:14,640 --> 00:28:16,520
Speaker 2: like I've been in this sense of overtime ever since

589
00:28:16,520 --> 00:28:18,360
Speaker 2: that first time I almost died, and now it's it's

590
00:28:18,400 --> 00:28:20,640
Speaker 2: been five times reps ie goodbye to my loved ones,

591
00:28:20,680 --> 00:28:24,600
Speaker 2: and I've approached you know, passing, and with each one

592
00:28:24,640 --> 00:28:26,280
Speaker 2: of these I just find that I'm sort of like

593
00:28:26,280 --> 00:28:29,040
Speaker 2: in my fifth overtime now where it's like just tremendous

594
00:28:29,080 --> 00:28:31,960
Speaker 2: clarity of purpose. So it's the same sort of concept

595
00:28:31,960 --> 00:28:34,239
Speaker 2: that that he was sharing, but it gives you this

596
00:28:34,280 --> 00:28:37,239
Speaker 2: beautiful clarity. You do the things that you need to

597
00:28:37,240 --> 00:28:39,680
Speaker 2: do and that you believe should be done. You don't

598
00:28:39,680 --> 00:28:41,680
Speaker 2: do the other stuff, you know, not when you're an

599
00:28:41,680 --> 00:28:43,680
Speaker 2: overtime you can't waste your time to other stuff. And

600
00:28:43,760 --> 00:28:46,440
Speaker 2: so so I think that that sense of overtime is

601
00:28:46,480 --> 00:28:49,959
Speaker 2: something that someone could can relate to that hasn't had

602
00:28:49,960 --> 00:28:52,080
Speaker 2: a near death experience, but they've played a sporting event

603
00:28:52,120 --> 00:28:54,440
Speaker 2: where they've been in overtime and they can understand that

604
00:28:54,520 --> 00:28:57,760
Speaker 2: dance between between fear and clarity. You know, it's it

605
00:28:57,800 --> 00:29:00,360
Speaker 2: could be scary or it could just lock you in

606
00:29:00,480 --> 00:29:03,200
Speaker 2: and give you total clarity. And so so then to

607
00:29:03,280 --> 00:29:05,600
Speaker 2: your question, sort of you know what happens next, Well,

608
00:29:06,000 --> 00:29:09,320
Speaker 2: so spend this time six months, most of the time hospitalized,

609
00:29:09,360 --> 00:29:11,800
Speaker 2: get out, have all this hope. I'm on this drug

610
00:29:11,880 --> 00:29:14,600
Speaker 2: that's hopefully going to keep me in remission, go back

611
00:29:14,600 --> 00:29:19,480
Speaker 2: to med school. I'm dating Caitlin. It feels like I'm

612
00:29:19,520 --> 00:29:21,360
Speaker 2: back to the life I was having before. I'm still

613
00:29:21,360 --> 00:29:24,080
Speaker 2: getting in infusion every three weeks, but I'm hopeful this

614
00:29:24,160 --> 00:29:26,080
Speaker 2: drug is going to keep me in remission. And then

615
00:29:26,120 --> 00:29:28,840
Speaker 2: I relapse and I almost die. Now for the fourth time,

616
00:29:29,240 --> 00:29:33,480
Speaker 2: I spent a month in the ICU critical condition again.

617
00:29:33,560 --> 00:29:36,800
Speaker 2: I get all the same chemotherapies. I say goodbye to everyone.

618
00:29:37,000 --> 00:29:39,480
Speaker 2: I you know, cry with Caitlin that I'm not going

619
00:29:39,560 --> 00:29:43,560
Speaker 2: to make it, but it works. The chemo works. But

620
00:29:43,760 --> 00:29:46,360
Speaker 2: the important thing here is now, at this stage, I

621
00:29:46,440 --> 00:29:49,120
Speaker 2: now have failed to respond to the only drug that's

622
00:29:49,160 --> 00:29:51,800
Speaker 2: being studied for my disease. So like these chemos I

623
00:29:51,840 --> 00:29:53,719
Speaker 2: was getting, they weren't made for castlemans. But someone had

624
00:29:53,720 --> 00:29:56,120
Speaker 2: finally done a clinical trial of this drug called seltuxamap,

625
00:29:56,840 --> 00:29:58,680
Speaker 2: and ID heard it. It helped other patients, and so I

626
00:29:58,720 --> 00:30:00,520
Speaker 2: hoped it would help me, but it didn't help me.

627
00:30:00,600 --> 00:30:03,720
Speaker 2: So my doctor explained that there weren't any more other

628
00:30:03,760 --> 00:30:05,600
Speaker 2: drugs in development, and I was like, well, are there

629
00:30:05,640 --> 00:30:07,680
Speaker 2: any leads, like, you know, is there something that maybe

630
00:30:07,720 --> 00:30:10,080
Speaker 2: we think looks promising? Is like, no, there's nothing. Like

631
00:30:10,640 --> 00:30:13,280
Speaker 2: you've failed to respond to the one drug that's in development.

632
00:30:13,760 --> 00:30:15,840
Speaker 2: We've been giving you all this chemo that's made for

633
00:30:15,880 --> 00:30:18,800
Speaker 2: other diseases. That chemo is going to stop working at

634
00:30:18,800 --> 00:30:23,160
Speaker 2: some point, or you're about to reach the lifetime max

635
00:30:23,360 --> 00:30:26,360
Speaker 2: of one of those chemotherapy drugs, adriamisen, so we're not

636
00:30:26,360 --> 00:30:27,680
Speaker 2: going to able to give you any more of it,

637
00:30:28,400 --> 00:30:33,320
Speaker 2: and so you're unlikely to live much longer period. And

638
00:30:33,400 --> 00:30:35,040
Speaker 2: so for me, you know, this is I think gets

639
00:30:35,040 --> 00:30:38,640
Speaker 2: to that question you're asking. Remember hearing that, and I'm saying,

640
00:30:38,680 --> 00:30:41,240
Speaker 2: you know, there's no more promising leads. We've tried everything.

641
00:30:41,280 --> 00:30:42,720
Speaker 2: This is it. You know, we're going to give you

642
00:30:42,760 --> 00:30:45,240
Speaker 2: the chemo again. Let's hope it works, but but it's

643
00:30:45,280 --> 00:30:47,120
Speaker 2: we're not going to keep doing this. This is this,

644
00:30:47,120 --> 00:30:49,160
Speaker 2: This is you know, probably the last time it's going

645
00:30:49,240 --> 00:30:55,200
Speaker 2: to work. And if it does. And I remember related

646
00:30:55,200 --> 00:30:57,320
Speaker 2: to your question, I remember, you know, being heartbroken for

647
00:30:57,440 --> 00:30:59,640
Speaker 2: about a minute. My dad, my sisters, and Caitlin were

648
00:30:59,680 --> 00:31:01,320
Speaker 2: in the room and we were all crying, and I was,

649
00:31:01,320 --> 00:31:03,480
Speaker 2: you know, snock crying. My doctors now said this is it.

650
00:31:03,760 --> 00:31:05,280
Speaker 2: We'd been in the room when my mom when the

651
00:31:05,320 --> 00:31:07,200
Speaker 2: doctors told us the same thing. You know, we'd gone

652
00:31:07,200 --> 00:31:09,400
Speaker 2: through this once before, we knew what it meant, and

653
00:31:09,480 --> 00:31:11,600
Speaker 2: we'd seen it play out the way that the doctors

654
00:31:11,600 --> 00:31:14,480
Speaker 2: had told us it was. And at this stage, for me, yes,

655
00:31:14,560 --> 00:31:17,400
Speaker 2: I had survived you know, three times before, but it

656
00:31:17,520 --> 00:31:19,160
Speaker 2: sort of felt like my luck was going to run out.

657
00:31:19,160 --> 00:31:21,800
Speaker 2: At some point. It felt like I was I mean, frankly,

658
00:31:21,840 --> 00:31:24,320
Speaker 2: I was playing the equivalent or maybe even a more

659
00:31:24,400 --> 00:31:26,920
Speaker 2: dangerous game than Russian Roulette. I was probably playing Russian

660
00:31:26,960 --> 00:31:29,640
Speaker 2: Roulette with four out of five chambers you know, loaded,

661
00:31:29,880 --> 00:31:31,680
Speaker 2: and I'd played it, you know now four times, So

662
00:31:31,720 --> 00:31:33,080
Speaker 2: how likely are you going to be that you're going

663
00:31:33,160 --> 00:31:36,400
Speaker 2: to make it, you know, another time. So that was

664
00:31:36,440 --> 00:31:40,840
Speaker 2: the sadness that came into it. But now the within

665
00:31:40,880 --> 00:31:44,360
Speaker 2: about a minute or two, my mindset just completely change.

666
00:31:44,680 --> 00:31:48,160
Speaker 2: And I don't know if I have a great, you know,

667
00:31:48,240 --> 00:31:51,240
Speaker 2: explanation for what the change was, but it just immediately

668
00:31:51,280 --> 00:31:55,080
Speaker 2: changed from Okay, you know, you're telling me that you're

669
00:31:55,120 --> 00:31:58,720
Speaker 2: out of options. Well, up until now, I just believed

670
00:31:58,760 --> 00:32:01,000
Speaker 2: that some doctors, some would figure it out for me.

671
00:32:01,240 --> 00:32:02,920
Speaker 2: And if I went to the world's expert, which is

672
00:32:02,920 --> 00:32:05,400
Speaker 2: this doctor doctor Vanri, that you'll have the answers. And

673
00:32:05,440 --> 00:32:07,640
Speaker 2: now doctor Van Reed, the world's expert, is telling me

674
00:32:07,680 --> 00:32:11,280
Speaker 2: were out of answers, which means now we've fully we've

675
00:32:11,560 --> 00:32:14,160
Speaker 2: you know, fully exercised all of the possibilities that the

676
00:32:14,160 --> 00:32:17,200
Speaker 2: world would have. So if I'm going to keep hoping

677
00:32:17,240 --> 00:32:18,960
Speaker 2: for a life with Caitlin or a life where I

678
00:32:18,960 --> 00:32:21,280
Speaker 2: can help other people, I'm now going to need to

679
00:32:21,280 --> 00:32:23,200
Speaker 2: turn my hope into action. I'm going to now need

680
00:32:23,240 --> 00:32:25,520
Speaker 2: to start taking action, and I'm probably not going to

681
00:32:25,600 --> 00:32:28,080
Speaker 2: solve this disease I'm almost certainly not going to find

682
00:32:28,080 --> 00:32:30,120
Speaker 2: a drug that will save my life. But if I'm

683
00:32:30,120 --> 00:32:31,840
Speaker 2: going to hope for it, I got to take action

684
00:32:31,960 --> 00:32:34,840
Speaker 2: to do it. And I think my decision to do

685
00:32:34,880 --> 00:32:36,600
Speaker 2: that was informed by a lot of things. I think,

686
00:32:36,880 --> 00:32:40,160
Speaker 2: like I said, watching my mom, you know, go through

687
00:32:40,160 --> 00:32:41,760
Speaker 2: what she went through, and we were hopeful even to

688
00:32:41,760 --> 00:32:44,760
Speaker 2: the end, but frankly, there were we actually weren't doing

689
00:32:44,760 --> 00:32:47,120
Speaker 2: anything to make it more likely that she was going

690
00:32:47,120 --> 00:32:49,520
Speaker 2: to survive. We weren't developing new drugs. We weren't, you know,

691
00:32:51,040 --> 00:32:54,080
Speaker 2: we were hoping, We were hoping, and then we were waiting,

692
00:32:54,240 --> 00:32:56,840
Speaker 2: right And for me, I just just said, I I

693
00:32:56,880 --> 00:32:58,960
Speaker 2: can't hope and then wait that it's going to happen.

694
00:32:59,000 --> 00:33:00,600
Speaker 2: I've got to turn my hope into it. So I

695
00:33:00,600 --> 00:33:03,360
Speaker 2: promised my family that I would dedicate the rest of

696
00:33:03,360 --> 00:33:06,400
Speaker 2: my life, like literally every minute, for howver much longer

697
00:33:06,440 --> 00:33:08,520
Speaker 2: I had, trying to find a drug that could save

698
00:33:08,560 --> 00:33:11,719
Speaker 2: my life. And I knew I didn't have a billion

699
00:33:11,760 --> 00:33:14,040
Speaker 2: dollars or fifteen years to make a new drug, which

700
00:33:14,080 --> 00:33:15,640
Speaker 2: is about what it costs and how much time it

701
00:33:15,680 --> 00:33:19,040
Speaker 2: takes to make a single new drug. But I remembered

702
00:33:19,080 --> 00:33:22,400
Speaker 2: that those seven chemotherapies that my doctors had given me

703
00:33:22,440 --> 00:33:25,640
Speaker 2: weren't made for Castleanes. So I thought to myself, Okay,

704
00:33:25,680 --> 00:33:28,120
Speaker 2: well you told me that there weren't any drugs for

705
00:33:28,160 --> 00:33:30,400
Speaker 2: Castleman disease, but you also just used seven drugs that

706
00:33:30,440 --> 00:33:33,880
Speaker 2: weren't for Castleman disease that saved me. So like, how

707
00:33:33,880 --> 00:33:35,840
Speaker 2: do we know there's not an eighth drug somewhere that

708
00:33:35,920 --> 00:33:38,000
Speaker 2: could save me? I mean there's four thousand of proved drugs.

709
00:33:38,040 --> 00:33:40,320
Speaker 2: Have we tried all four thousand drugs for Castleman's right?

710
00:33:40,360 --> 00:33:43,120
Speaker 2: And of course the answer is no. But for me,

711
00:33:43,240 --> 00:33:44,840
Speaker 2: that's all I could think about it. It's like, Okay, you

712
00:33:44,960 --> 00:33:46,720
Speaker 2: proved to me that you can use a drug that's

713
00:33:46,720 --> 00:33:48,960
Speaker 2: I made for my disease to save me. I've also

714
00:33:49,080 --> 00:33:52,360
Speaker 2: seen Castleman's drugs help patients with other diseases because they've

715
00:33:52,400 --> 00:33:54,720
Speaker 2: been repurposed for other diseases. Right, how do we know

716
00:33:54,760 --> 00:33:56,480
Speaker 2: there's not another drug out there that could help me?

717
00:33:57,640 --> 00:34:00,320
Speaker 2: So that became my mission and it was just locked

718
00:34:00,320 --> 00:34:02,160
Speaker 2: in laser focus. I've got to do research on my

719
00:34:02,200 --> 00:34:04,840
Speaker 2: own blood samples. I've got to get as much data

720
00:34:04,880 --> 00:34:06,680
Speaker 2: as I came in other patients of castle and disease

721
00:34:06,920 --> 00:34:09,279
Speaker 2: to understand what's going wrong. And then I've got to

722
00:34:09,280 --> 00:34:11,480
Speaker 2: see is there a drug that's made for something else

723
00:34:11,800 --> 00:34:14,279
Speaker 2: that could possibly be repurposed to save me?

724
00:34:14,840 --> 00:34:17,040
Speaker 1: And you've got to do this all within what three months?

725
00:34:17,040 --> 00:34:17,520
Speaker 1: Four months?

726
00:34:17,520 --> 00:34:20,360
Speaker 2: You're thinking, like I figured I had, I had probably

727
00:34:20,480 --> 00:34:24,040
Speaker 2: six months or so of time, is sort of what

728
00:34:24,040 --> 00:34:28,040
Speaker 2: I thought before i'd relapse again. And it turned out

729
00:34:28,040 --> 00:34:29,600
Speaker 2: that I actually had about twelve months, so I was

730
00:34:29,840 --> 00:34:32,720
Speaker 2: able to get some some progress made in those twelve months,

731
00:34:34,040 --> 00:34:36,640
Speaker 2: came up with some hypotheses. Maybe most important, I started

732
00:34:36,640 --> 00:34:38,920
Speaker 2: storing my blood samples in the freezer so that way,

733
00:34:39,200 --> 00:34:40,879
Speaker 2: if I survived, I would be able to go back

734
00:34:40,920 --> 00:34:44,399
Speaker 2: to those samples and perform research on them. And sure enough,

735
00:34:44,440 --> 00:34:46,920
Speaker 2: I relapsed. So I had my fifth one, and I

736
00:34:47,000 --> 00:34:49,239
Speaker 2: was so heartbroken because I just felt like, you know,

737
00:34:49,280 --> 00:34:51,400
Speaker 2: I put everything I had into trying to find something,

738
00:34:51,400 --> 00:34:53,879
Speaker 2: and I had identified two drugs that I thought might work,

739
00:34:53,920 --> 00:34:56,640
Speaker 2: and actually i'd even persuaded my doctors to try both

740
00:34:56,680 --> 00:34:59,120
Speaker 2: of them. The first one looked like it was maybe helping,

741
00:34:59,160 --> 00:35:01,000
Speaker 2: and then I got worse than the second one didn't

742
00:35:01,040 --> 00:35:03,680
Speaker 2: do anything, and so I felt like I gave it

743
00:35:03,680 --> 00:35:05,719
Speaker 2: my two shots, you know, I was chasing my cure

744
00:35:05,800 --> 00:35:08,000
Speaker 2: and I got two shots. Like I put everything I

745
00:35:08,040 --> 00:35:10,720
Speaker 2: had into it for that year. I tried these two drugs,

746
00:35:10,760 --> 00:35:15,439
Speaker 2: iv ig and cyclist boring and they didn't work. Yeah,

747
00:35:15,480 --> 00:35:18,160
Speaker 2: they didn't work, and and so you know, I really

748
00:35:18,200 --> 00:35:20,360
Speaker 2: I was back in the hospital, back you know, critical

749
00:35:20,360 --> 00:35:23,000
Speaker 2: condition for another month. I got those same seven chemo therapies,

750
00:35:23,080 --> 00:35:26,320
Speaker 2: like I said, approaching my lifetime max, but they basically

751
00:35:26,320 --> 00:35:29,920
Speaker 2: gave me it again, said goodbye to Caitlin, said goodbye

752
00:35:29,920 --> 00:35:32,920
Speaker 2: to everyone, and again I was just heartbroken that I

753
00:35:33,400 --> 00:35:37,239
Speaker 2: was disappointed in myself also that I hadn't figured it out.

754
00:35:37,400 --> 00:35:39,279
Speaker 2: You know, I didn't think it was likely I would

755
00:35:39,280 --> 00:35:41,480
Speaker 2: figure it out. But like Caitlyn, who was my fiance

756
00:35:41,560 --> 00:35:43,600
Speaker 2: at the time, she was convinced I was going to

757
00:35:43,640 --> 00:35:46,319
Speaker 2: figure it out. She's like, David, like, you're gonna work

758
00:35:46,320 --> 00:35:48,680
Speaker 2: hard and you're gonna find this drug that's gonna cure you.

759
00:35:48,719 --> 00:35:51,759
Speaker 2: And I'm like, I wish I had your confidence, Like yeah,

760
00:35:51,760 --> 00:35:53,960
Speaker 2: but I wish I had the same confidence you did, Caitlin.

761
00:35:54,160 --> 00:35:57,399
Speaker 2: But but I was disappointed that I didn't. I wasn't

762
00:35:57,400 --> 00:36:00,120
Speaker 2: able to do that, and that the two drugs we

763
00:36:00,239 --> 00:36:03,920
Speaker 2: tried failed and I was heartbroken, and you know, I

764
00:36:04,040 --> 00:36:07,520
Speaker 2: said goodbye, and I remember sort of letting go and

765
00:36:07,560 --> 00:36:10,239
Speaker 2: saying this is it. And then I remember a couple

766
00:36:10,320 --> 00:36:12,560
Speaker 2: days later, starting to wake up again and having this

767
00:36:12,680 --> 00:36:15,000
Speaker 2: just tremendous euphoria, like, oh my gosh, I'm going to

768
00:36:15,040 --> 00:36:17,160
Speaker 2: have another shot at this, Like I don't know how,

769
00:36:17,200 --> 00:36:19,840
Speaker 2: but the chemotherapy worked and I got to make the

770
00:36:19,920 --> 00:36:22,400
Speaker 2: most of this time. And so the first thing I

771
00:36:22,400 --> 00:36:24,560
Speaker 2: said when I started to wake up, I remember this

772
00:36:24,640 --> 00:36:26,399
Speaker 2: so well. This is twelve years ago, by the way.

773
00:36:26,719 --> 00:36:29,120
Speaker 2: I remember looking to my left and seeing Gina, one

774
00:36:29,160 --> 00:36:30,560
Speaker 2: of my sisters, and looked at my right and seeing

775
00:36:30,560 --> 00:36:34,279
Speaker 2: Caitlyn and being like, oh my gosh, g Caitlyn, like

776
00:36:35,480 --> 00:36:38,799
Speaker 2: I'm here. I think that I've got another shot at this.

777
00:36:39,680 --> 00:36:41,840
Speaker 2: And then the next thing I said was, gee, I

778
00:36:41,920 --> 00:36:44,520
Speaker 2: need you to call UNC because there's some blood samples

779
00:36:44,520 --> 00:36:47,400
Speaker 2: stored in their basement and their pathology lab, and you

780
00:36:47,400 --> 00:36:49,839
Speaker 2: get the scent to Philadelphia. Caitlyn. I used to go

781
00:36:49,880 --> 00:36:51,960
Speaker 2: downstairs to the basement here and get all the medical

782
00:36:51,960 --> 00:36:54,920
Speaker 2: records you can from Little Rock, Arkansas, from UAMS send

783
00:36:54,960 --> 00:36:57,560
Speaker 2: them to Philadelphia, like we got work to do. And

784
00:36:57,600 --> 00:36:59,839
Speaker 2: it's like, of course, I'm saying it like I'm healthy now.

785
00:37:00,160 --> 00:37:02,200
Speaker 2: Like it was probably like a lot of pauses and

786
00:37:02,280 --> 00:37:04,360
Speaker 2: a lot of like catching my breath because I was

787
00:37:04,400 --> 00:37:06,799
Speaker 2: so sick. But wow, it was just so clear that

788
00:37:07,160 --> 00:37:08,880
Speaker 2: I got another shot at this and I don't know

789
00:37:08,880 --> 00:37:11,439
Speaker 2: how much long it's how much time it's going to be. Yeah,

790
00:37:11,480 --> 00:37:12,640
Speaker 2: I got to take advantage of it.

791
00:37:12,680 --> 00:37:15,759
Speaker 1: And now you did this. You're in the zone, the

792
00:37:15,800 --> 00:37:16,880
Speaker 1: overtime zone.

793
00:37:16,760 --> 00:37:21,239
Speaker 2: Of really in the zone total clarity, locked in all day,

794
00:37:21,440 --> 00:37:26,480
Speaker 2: every day in the lab. When I'm at my house,

795
00:37:26,560 --> 00:37:29,960
Speaker 2: Caitlin's literally putting plates in front of me and like

796
00:37:30,080 --> 00:37:32,279
Speaker 2: telling me to eat, and like sometimes even you know,

797
00:37:32,320 --> 00:37:34,160
Speaker 2: putting the food in my mouth, but mostly just being

798
00:37:34,200 --> 00:37:36,520
Speaker 2: like you have to eat, and like doing that while

799
00:37:36,560 --> 00:37:38,520
Speaker 2: I'm reading something or I'm looking at results, and I'm

800
00:37:38,560 --> 00:37:42,800
Speaker 2: just like locked in to try to find something. And eventually,

801
00:37:42,840 --> 00:37:44,600
Speaker 2: over the course of the next few weeks, I did

802
00:37:44,600 --> 00:37:46,719
Speaker 2: a bunch of experiments on my blood samples. It made

803
00:37:46,719 --> 00:37:50,440
Speaker 2: me think that a drug that turns off a communication

804
00:37:50,480 --> 00:37:52,960
Speaker 2: line called m tour in night works, m tour is

805
00:37:52,960 --> 00:37:55,240
Speaker 2: important for your immune system to communicate with one another.

806
00:37:55,280 --> 00:37:57,640
Speaker 2: We thought that maybe that was the source for my

807
00:37:57,680 --> 00:38:00,480
Speaker 2: immune system going out of control, and so I started

808
00:38:00,480 --> 00:38:02,719
Speaker 2: testing it on myself as the first patient ever with

809
00:38:02,800 --> 00:38:07,799
Speaker 2: Castleman's And that was a little bit over twelve years ago.

810
00:38:08,120 --> 00:38:11,640
Speaker 2: No relapses, full remission. You know, it almost died five

811
00:38:11,640 --> 00:38:14,480
Speaker 2: times in the three years before and now twelve years without.

812
00:38:15,120 --> 00:38:17,920
Speaker 1: So wait a minute. You you rushed through that a

813
00:38:17,960 --> 00:38:22,920
Speaker 1: little bit. So you you got the labs, you know,

814
00:38:22,960 --> 00:38:24,279
Speaker 1: you got all the help you needed. You got the

815
00:38:24,280 --> 00:38:27,600
Speaker 1: blood samples, you got the medical information. You started testing

816
00:38:28,040 --> 00:38:31,000
Speaker 1: and experimenting on your own blood and testing your yourself

817
00:38:31,320 --> 00:38:34,200
Speaker 1: and looking at your markers, and you saw a correlation

818
00:38:34,320 --> 00:38:38,919
Speaker 1: between the mtour. You needed an intour inhibitor, I guess

819
00:38:38,960 --> 00:38:41,120
Speaker 1: to stop right from Okay, how did you find a

820
00:38:41,200 --> 00:38:42,520
Speaker 1: drug that would stop mtour?

821
00:38:42,840 --> 00:38:45,359
Speaker 2: The beautiful thing about this is that there's a drug

822
00:38:45,400 --> 00:38:49,600
Speaker 2: called cerrillonus that is like a perfect inhibitor of M tour.

823
00:38:49,640 --> 00:38:53,080
Speaker 2: In fact, it's so good at inhibiting M tour that

824
00:38:53,480 --> 00:38:57,279
Speaker 2: M tour was named after the drug. So M tour

825
00:38:57,320 --> 00:38:59,920
Speaker 2: actually stands from a Melian target of rapa ice in

826
00:39:00,040 --> 00:39:03,800
Speaker 2: rapim ice is of crillimis. Okay, and so it's literally

827
00:39:03,880 --> 00:39:07,680
Speaker 2: like this communication line in your body. If you want

828
00:39:07,719 --> 00:39:09,759
Speaker 2: to turn it off you go to srillimis or rap

829
00:39:09,800 --> 00:39:11,319
Speaker 2: of mice, and that's the other name for it. And

830
00:39:11,360 --> 00:39:13,680
Speaker 2: so it was like an immediate connect. Like as soon

831
00:39:13,719 --> 00:39:16,799
Speaker 2: as I discovered that m tour was an overdrive, I

832
00:39:16,880 --> 00:39:18,920
Speaker 2: meet him said, oh my gosh, there's a there's an

833
00:39:19,000 --> 00:39:21,720
Speaker 2: M tour inhibitor for this. And the best part about

834
00:39:21,719 --> 00:39:23,480
Speaker 2: it is that it's a drug that's usually used for

835
00:39:23,560 --> 00:39:26,440
Speaker 2: organ transplant rejection. That's what it's approved for. So people

836
00:39:26,480 --> 00:39:29,400
Speaker 2: are on it for years and years, I mean sometimes decades,

837
00:39:29,920 --> 00:39:31,319
Speaker 2: and the drug could have been approved for a couple

838
00:39:31,360 --> 00:39:34,280
Speaker 2: of decades at the time, and so I was thrilled.

839
00:39:34,320 --> 00:39:37,239
Speaker 2: I was like, okay, you know this communication line basically

840
00:39:37,600 --> 00:39:39,880
Speaker 2: the way I envisioned it, and we've now done a

841
00:39:39,880 --> 00:39:42,200
Speaker 2: lot of lab work to confirm it, was that M

842
00:39:42,239 --> 00:39:44,640
Speaker 2: tour is essential for your immune system to communicate with

843
00:39:44,680 --> 00:39:47,000
Speaker 2: one other, sort of an alarm system, and if it's

844
00:39:47,000 --> 00:39:49,640
Speaker 2: turned into overdrive, now your whole immune system thinks there's

845
00:39:49,640 --> 00:39:52,279
Speaker 2: a fire, and so it is going crazy trying to

846
00:39:52,320 --> 00:39:54,799
Speaker 2: put out a fire, but in doing so, it's just

847
00:39:54,840 --> 00:39:56,680
Speaker 2: strowing all of your vital organs. And so we thought, well,

848
00:39:56,719 --> 00:39:59,200
Speaker 2: if we can turn off the alarm, turn m tour

849
00:39:59,239 --> 00:40:02,399
Speaker 2: off with Sarah Lime. Maybe our immune cells stopped trying

850
00:40:02,400 --> 00:40:04,600
Speaker 2: to destroy organs because they don't sense that there's some

851
00:40:04,640 --> 00:40:08,279
Speaker 2: sort of fire to put out right, And yeah, I

852
00:40:08,320 --> 00:40:11,040
Speaker 2: mean they had never been tried before, but here we

853
00:40:11,080 --> 00:40:12,000
Speaker 2: are twelve years later.

854
00:40:12,200 --> 00:40:17,000
Speaker 1: That's just amazing. So you're you're you're not sure what's

855
00:40:17,560 --> 00:40:20,399
Speaker 1: causing your body to be pissed off? Yep, And you're

856
00:40:20,440 --> 00:40:22,960
Speaker 1: not sure what the what is causing this mtour to

857
00:40:23,160 --> 00:40:25,320
Speaker 1: just go crazy and start to attend and create this

858
00:40:25,360 --> 00:40:27,560
Speaker 1: situation where it's attacking you, but to figure out how

859
00:40:27,560 --> 00:40:29,360
Speaker 1: to stop it or a drug that was used to

860
00:40:29,400 --> 00:40:34,960
Speaker 1: help people from rejecting organ transplants exactly. Wow, that's brilliant.

861
00:40:35,160 --> 00:40:35,920
Speaker 1: That's just brilliant.

862
00:40:36,080 --> 00:40:37,680
Speaker 2: It all happened over a couple of weeks too, And

863
00:40:37,760 --> 00:40:39,719
Speaker 2: I mean, I will say when I started taking it,

864
00:40:40,200 --> 00:40:42,399
Speaker 2: I wasn't like, oh my gosh, you've saved this. It's

865
00:40:42,400 --> 00:40:45,160
Speaker 2: gonna work forever. I was sort of like, the data

866
00:40:45,239 --> 00:40:49,120
Speaker 2: suggests that maybe this could help me, and right now

867
00:40:49,160 --> 00:40:52,080
Speaker 2: I got no other alternatives, and so I'm gonna try it.

868
00:40:52,280 --> 00:40:54,600
Speaker 2: And I knew it would be a test of time

869
00:40:54,719 --> 00:40:58,239
Speaker 2: because I had had remissions, I'd had two remissions that

870
00:40:58,280 --> 00:41:01,160
Speaker 2: lasted about a year before that, and then I relapsed

871
00:41:01,200 --> 00:41:02,800
Speaker 2: on them and I, you know, almost died. It was

872
00:41:02,840 --> 00:41:05,080
Speaker 2: as though I had never even been in remission, and

873
00:41:05,120 --> 00:41:07,960
Speaker 2: so I knew that I couldn't celebrate because I'd sort

874
00:41:07,960 --> 00:41:10,120
Speaker 2: of celebrated a little too soon a couple of times before,

875
00:41:10,200 --> 00:41:13,160
Speaker 2: and that made it made it really heartbreaking when I relapsed,

876
00:41:13,160 --> 00:41:15,040
Speaker 2: because I was like, we did it, like this is

877
00:41:15,080 --> 00:41:17,759
Speaker 2: it like aay? So this time I was I'm gonna

878
00:41:17,760 --> 00:41:21,480
Speaker 2: take more of a measured approach. It's I'm in remission today,

879
00:41:21,840 --> 00:41:23,239
Speaker 2: you know, like and then it's just going to be

880
00:41:23,320 --> 00:41:26,560
Speaker 2: And I started measuring my remission by fractions of a month,

881
00:41:26,640 --> 00:41:29,279
Speaker 2: so it was like, you know, it's three point you know,

882
00:41:29,400 --> 00:41:32,279
Speaker 2: seven two months of remission, and it sort of kept

883
00:41:32,320 --> 00:41:34,160
Speaker 2: stacking and it's like every month it's like, oh my gosh,

884
00:41:34,200 --> 00:41:36,520
Speaker 2: I can't leave. It's another month. We celebrated every month

885
00:41:36,560 --> 00:41:37,600
Speaker 2: on the fifth of the month, and it was like,

886
00:41:37,640 --> 00:41:39,719
Speaker 2: oh my gosh, you know, these things are adding up.

887
00:41:39,719 --> 00:41:41,759
Speaker 2: And then and then we made it to Kitin and

888
00:41:41,760 --> 00:41:44,160
Speaker 2: I's wedding day May twenty four to twenty fourteen, which

889
00:41:44,200 --> 00:41:47,600
Speaker 2: was like just incredible. Didn't think it would be possible

890
00:41:48,200 --> 00:41:51,680
Speaker 2: and kind. It's just the month just kept adding up.

891
00:41:51,719 --> 00:41:52,799
Speaker 2: Thank you, thank you.

892
00:41:53,000 --> 00:41:55,040
Speaker 1: So now it's been well over a decade, is that right?

893
00:41:55,280 --> 00:41:59,680
Speaker 2: Past? Twelve twelve years? January mark twelve years coming up.

894
00:41:59,719 --> 00:42:02,319
Speaker 1: After the break, we'll continue our conversation with doctor David

895
00:42:02,360 --> 00:42:05,279
Speaker 1: Fagenbaum and you'll hear how his story evolves from one

896
00:42:05,280 --> 00:42:08,560
Speaker 1: of personal survival to service. It really becomes a story

897
00:42:08,600 --> 00:42:11,560
Speaker 1: about all medicine and all diseases.

898
00:42:12,000 --> 00:42:12,600
Speaker 2: Stay tuned.

899
00:42:31,400 --> 00:42:34,759
Speaker 1: Congratulations, that's just such a breathtaking story. But it didn't

900
00:42:34,760 --> 00:42:38,840
Speaker 1: stop there. So then next you you had another experience

901
00:42:38,880 --> 00:42:42,719
Speaker 1: I think with some another family member or a relative.

902
00:42:42,960 --> 00:42:44,640
Speaker 2: And yeah, I had a lot, I have a lot

903
00:42:44,680 --> 00:42:47,719
Speaker 2: of family health experiences.

904
00:42:47,560 --> 00:42:51,040
Speaker 1: And but but this, this seemed to stimulate you to

905
00:42:51,080 --> 00:42:54,879
Speaker 1: take this beyond survival towards your initial goal from back

906
00:42:54,960 --> 00:42:56,600
Speaker 1: with your mother, of helping others.

907
00:42:57,200 --> 00:43:00,239
Speaker 2: Yeah, tell us us about that, absolutely, yes, I mean

908
00:43:00,239 --> 00:43:02,080
Speaker 2: for me, I'll tell you the day that this drug

909
00:43:02,160 --> 00:43:05,880
Speaker 2: Sria Limas started helping me, I immediately started thinking, wait a minute,

910
00:43:06,600 --> 00:43:08,920
Speaker 2: this drug was at my pharmacy all along, and no

911
00:43:08,920 --> 00:43:12,240
Speaker 2: one knew knew to try it. Are there other drugs

912
00:43:12,280 --> 00:43:14,319
Speaker 2: at the CVS they could help people that no one

913
00:43:14,400 --> 00:43:16,920
Speaker 2: knew to try, like, cause I should be dead, like

914
00:43:17,280 --> 00:43:19,279
Speaker 2: you know, five times now I should have died. And

915
00:43:19,719 --> 00:43:22,200
Speaker 2: you know, thankfully I was able to survive and find

916
00:43:22,200 --> 00:43:24,480
Speaker 2: this drug. But you know, the world wouldn't know about

917
00:43:24,560 --> 00:43:27,440
Speaker 2: Sri Limis if not for a lot of things lining up.

918
00:43:27,719 --> 00:43:30,040
Speaker 2: Are there other things that are you know, that are

919
00:43:30,120 --> 00:43:33,040
Speaker 2: hiding in plain sight? So so that became an immediate thought.

920
00:43:33,080 --> 00:43:34,880
Speaker 2: I was like, wow, you know what else is in

921
00:43:34,880 --> 00:43:38,040
Speaker 2: that CVS? They could help more people. And then I

922
00:43:38,080 --> 00:43:40,640
Speaker 2: decided to join the faculty at Penn right after. So

923
00:43:40,800 --> 00:43:44,120
Speaker 2: I finished med school and business school at Penn as well,

924
00:43:44,160 --> 00:43:46,720
Speaker 2: and then once I finished, I joined the faculty really

925
00:43:46,719 --> 00:43:49,200
Speaker 2: with an eye to let's figure out more treatments for

926
00:43:49,280 --> 00:43:51,160
Speaker 2: Castleman's Let's see if we have the struggle work for

927
00:43:51,200 --> 00:43:55,920
Speaker 2: more patients. And we ended up eating more patients with

928
00:43:55,960 --> 00:43:58,040
Speaker 2: the drug and I'm on Sera limis. It helped some

929
00:43:58,080 --> 00:44:00,680
Speaker 2: of them, unfortunate out all of them. The first patient

930
00:44:00,680 --> 00:44:02,279
Speaker 2: had help that I saw, this young patient at the

931
00:44:02,320 --> 00:44:05,280
Speaker 2: Chosen's Hospital of Philadelphia. For me, that was a major

932
00:44:05,360 --> 00:44:07,719
Speaker 2: moment that just gave me so much fuel to see

933
00:44:07,760 --> 00:44:10,799
Speaker 2: this young boy Joey who was dying start to get

934
00:44:10,800 --> 00:44:13,200
Speaker 2: better on this drug and actually see his blood tests.

935
00:44:13,200 --> 00:44:15,440
Speaker 2: Every day. I'd come in his hospital room and his

936
00:44:15,760 --> 00:44:17,480
Speaker 2: mom would have a piece of paper waiting for me

937
00:44:17,520 --> 00:44:18,960
Speaker 2: with a lab task because she knew I wanted to

938
00:44:18,960 --> 00:44:20,880
Speaker 2: see the labs come in. She handed me the paper

939
00:44:20,880 --> 00:44:22,759
Speaker 2: and we'd start jumping up and down, like, you know,

940
00:44:22,800 --> 00:44:26,319
Speaker 2: things are working, He's getting better. And so so that

941
00:44:26,400 --> 00:44:29,239
Speaker 2: was a major, a major you know, accelerator for me

942
00:44:29,280 --> 00:44:31,359
Speaker 2: in the way I was thinking about things. But then

943
00:44:31,400 --> 00:44:37,279
Speaker 2: to your point, I had a really challenging week in

944
00:44:37,320 --> 00:44:42,120
Speaker 2: twenty sixteen April twenty sixteen when both my brother in law, Chris,

945
00:44:42,600 --> 00:44:45,560
Speaker 2: he was diagnosed with the ALS and my uncle Michael

946
00:44:45,640 --> 00:44:49,600
Speaker 2: was diagnosed with angiosarcoma. So angiosarcoma brings with it about

947
00:44:49,640 --> 00:44:53,160
Speaker 2: a ninety nine percent two year mortality, everyone dies within

948
00:44:53,200 --> 00:44:55,640
Speaker 2: a couple of years, and ALS brings with it about

949
00:44:55,640 --> 00:44:58,399
Speaker 2: a one hundred percent five year mortality and everyone dies

950
00:44:58,400 --> 00:45:01,200
Speaker 2: within five years, you know, maybe ninety nine point nine percent.

951
00:45:01,560 --> 00:45:04,480
Speaker 2: So these are like probably two of the worst diagnoses

952
00:45:04,520 --> 00:45:07,040
Speaker 2: you could possibly get. Same week. So I went to

953
00:45:07,040 --> 00:45:11,319
Speaker 2: North Carolina to be with my family. And this is

954
00:45:11,360 --> 00:45:15,759
Speaker 2: twenty sixteen, and a major trending point for me was

955
00:45:15,840 --> 00:45:20,840
Speaker 2: that I found a paper online describing some research that

956
00:45:20,880 --> 00:45:23,440
Speaker 2: people done into my uncle's cancer. So he had, you know,

957
00:45:23,440 --> 00:45:25,960
Speaker 2: I mentioned angels sarcoma. Someone had done research to determine

958
00:45:26,000 --> 00:45:30,759
Speaker 2: that there was increased expression of this marker called PDL one.

959
00:45:31,360 --> 00:45:33,360
Speaker 2: And this is twenty sixteen, but there had been a

960
00:45:33,360 --> 00:45:35,680
Speaker 2: couple of years worth of research suggesting that cancers that

961
00:45:35,719 --> 00:45:38,959
Speaker 2: I'd increased PDL one can sometimes benefit from a PD

962
00:45:39,080 --> 00:45:41,680
Speaker 2: one inhibitor. PD one hiitters had never been used before

963
00:45:41,680 --> 00:45:43,680
Speaker 2: for Angreis arcoma or any form of sarcoma. But I,

964
00:45:44,400 --> 00:45:46,919
Speaker 2: because I was in Raleigh to be with my brother

965
00:45:46,920 --> 00:45:48,520
Speaker 2: in law and my sister, I actually went with my

966
00:45:48,600 --> 00:45:50,680
Speaker 2: uncle to the doctor's appointment and I said the doctor,

967
00:45:50,680 --> 00:45:52,560
Speaker 2: you know, what do you think about testing for this

968
00:45:52,600 --> 00:45:55,960
Speaker 2: and maybe trying a PD one inhibitter. And he told me, said, David,

969
00:45:56,480 --> 00:46:00,239
Speaker 2: they've never been used before. They're prohibitically expensive, not even

970
00:46:00,280 --> 00:46:02,279
Speaker 2: going to test for it because like you know, it's

971
00:46:02,320 --> 00:46:04,640
Speaker 2: never been tried before. And I respond, I'm like, well,

972
00:46:04,640 --> 00:46:06,399
Speaker 2: the drug that I'm on had never been tried before,

973
00:46:06,440 --> 00:46:07,840
Speaker 2: and it's saving my life. And you just told my

974
00:46:07,920 --> 00:46:09,600
Speaker 2: uncle he's gonna die in the next three months, So

975
00:46:09,880 --> 00:46:12,280
Speaker 2: shouldn't we at least test the tumor just to see,

976
00:46:12,560 --> 00:46:14,000
Speaker 2: you know, if it's positive, then we can make a

977
00:46:14,000 --> 00:46:15,560
Speaker 2: decision from there. And he just wouldn't do it. He said,

978
00:46:15,600 --> 00:46:17,759
Speaker 2: I'm not going to do the test, and and so

979
00:46:17,840 --> 00:46:18,239
Speaker 2: we got to.

980
00:46:18,200 --> 00:46:20,120
Speaker 1: Say afraid of was he afraid of, like there being

981
00:46:20,160 --> 00:46:22,200
Speaker 1: some false false hope that would be impair?

982
00:46:22,520 --> 00:46:24,439
Speaker 2: False hope was the big thing he was concerned about,

983
00:46:24,440 --> 00:46:26,160
Speaker 2: he basically said, he said, David, you know, I take

984
00:46:26,200 --> 00:46:30,400
Speaker 2: care of people with you know, terminal sarcomas, and everyone

985
00:46:30,440 --> 00:46:32,239
Speaker 2: comes in here and they want to find something that

986
00:46:32,320 --> 00:46:35,239
Speaker 2: could give them hope, but nothing works. You know, they

987
00:46:35,239 --> 00:46:38,239
Speaker 2: all die from these horrible sarcomas. And I don't want

988
00:46:38,239 --> 00:46:40,640
Speaker 2: to create false hope by saying that there's a possibility.

989
00:46:41,080 --> 00:46:43,919
Speaker 2: And I can. I can appreciate that, I really can.

990
00:46:44,600 --> 00:46:46,480
Speaker 2: I can. I can see where he's coming from. I

991
00:46:47,080 --> 00:46:50,719
Speaker 2: hate false hope. I think that hope can be horrible

992
00:46:50,760 --> 00:46:53,839
Speaker 2: and it can be amazing, right, But I think that

993
00:46:53,880 --> 00:46:55,400
Speaker 2: if you've got someone who's going to die in the

994
00:46:55,400 --> 00:46:58,200
Speaker 2: next three months and there's any chance that you could

995
00:46:58,200 --> 00:46:59,640
Speaker 2: help them, I think you have to go.

996
00:46:59,560 --> 00:47:00,839
Speaker 1: For any chance at all.

997
00:47:01,200 --> 00:47:03,279
Speaker 2: Yeah, exactly, So we did the test, it came back

998
00:47:03,360 --> 00:47:06,880
Speaker 2: that his tumor was ninety nine percent positive for PDL

999
00:47:06,920 --> 00:47:10,400
Speaker 2: one expression. It was blazingly positive. So we actually were

1000
00:47:10,440 --> 00:47:13,239
Speaker 2: able to get Michael on pemberleism app as the first

1001
00:47:13,280 --> 00:47:15,800
Speaker 2: patient that we're aware of to ever be treated with

1002
00:47:15,800 --> 00:47:19,880
Speaker 2: with this PD one inhibitor for angis arcoma, and he

1003
00:47:20,040 --> 00:47:24,200
Speaker 2: responded incredibly well. Hit by the way hit metastatic as arcoma,

1004
00:47:24,239 --> 00:47:27,799
Speaker 2: his metastit he's immediately disappeared, his primary tumor shrunk down,

1005
00:47:27,840 --> 00:47:32,080
Speaker 2: eventually disappeared from scans, and he's been a remission for

1006
00:47:32,120 --> 00:47:33,120
Speaker 2: over nine years.

1007
00:47:33,280 --> 00:47:38,680
Speaker 1: And this is another thing that's impeding the trigger mechanism,

1008
00:47:38,719 --> 00:47:39,960
Speaker 1: which in this case is PDL one.

1009
00:47:40,040 --> 00:47:42,520
Speaker 2: Is that right, Yeah. The problem is is that cancers

1010
00:47:42,560 --> 00:47:45,720
Speaker 2: put up the express PDL one, and when PDL one's expressed,

1011
00:47:45,719 --> 00:47:48,040
Speaker 2: when your immune cells come in to look at the cancer,

1012
00:47:48,719 --> 00:47:51,279
Speaker 2: it actually signals those immune cells to kill themselves. PD

1013
00:47:51,400 --> 00:47:54,360
Speaker 2: one's answer programmed death lie in. So so these immune

1014
00:47:54,400 --> 00:47:57,120
Speaker 2: cells they see the cancer because our mune cells are

1015
00:47:57,120 --> 00:47:59,560
Speaker 2: actually they're pretty good at killing cancer. When they come in,

1016
00:47:59,640 --> 00:48:02,040
Speaker 2: they see yea they want to kill it. But PDL

1017
00:48:02,120 --> 00:48:05,080
Speaker 2: one basically says no, Actually immune cell, you should kill yourself.

1018
00:48:05,520 --> 00:48:07,239
Speaker 2: And so then the immune cell kills itself, and then

1019
00:48:07,280 --> 00:48:09,640
Speaker 2: it can't kill the cancer. But if you block PD

1020
00:48:09,840 --> 00:48:12,440
Speaker 2: one and PDL one from engaging with one another, the

1021
00:48:12,960 --> 00:48:15,279
Speaker 2: immune cell comes in, it sees the cancer, and the

1022
00:48:15,360 --> 00:48:17,480
Speaker 2: cancer tries to tell it to kill itself, but it's

1023
00:48:17,520 --> 00:48:19,279
Speaker 2: got a blocker and says, no, I'm not gonna kill myself.

1024
00:48:19,280 --> 00:48:21,680
Speaker 2: I'm gonna kill you. And then and then the immune

1025
00:48:21,719 --> 00:48:24,279
Speaker 2: cell is actually able to kill the cancer. So this

1026
00:48:24,600 --> 00:48:25,040
Speaker 2: triggered this.

1027
00:48:25,600 --> 00:48:29,080
Speaker 1: This was more sort of evidence from reality from the

1028
00:48:29,120 --> 00:48:31,440
Speaker 1: world if you will that if you could just get

1029
00:48:31,560 --> 00:48:35,640
Speaker 1: enough intel, yep, if we could just match enough markers

1030
00:48:35,760 --> 00:48:39,040
Speaker 1: with drugs that you know have an impact on that,

1031
00:48:40,320 --> 00:48:44,000
Speaker 1: then my god, we could probably stop a lot of diseases.

1032
00:48:44,040 --> 00:48:46,160
Speaker 1: So at some point this this triggered you to begin

1033
00:48:46,680 --> 00:48:49,640
Speaker 1: a process of let's click as much data and intel

1034
00:48:49,680 --> 00:48:52,040
Speaker 1: as we possibly can and cross reference. It is that

1035
00:48:52,120 --> 00:48:52,920
Speaker 1: sort of the next.

1036
00:48:52,880 --> 00:48:55,600
Speaker 2: That's exactly right. I mean, my mindset just immediately was, Okay,

1037
00:48:55,719 --> 00:48:58,200
Speaker 2: we saved my life with a repurpose drug, right if

1038
00:48:58,239 --> 00:49:02,480
Speaker 2: other patients castle three prose drugs. Now we've repurposed a

1039
00:49:02,560 --> 00:49:04,800
Speaker 2: drug for another disease that we had no idea about

1040
00:49:04,920 --> 00:49:08,880
Speaker 2: using no brilliance whatsoever. I mean, Dan, literally, I searched

1041
00:49:08,920 --> 00:49:11,160
Speaker 2: on a website called PubMed, which is like Google for

1042
00:49:11,320 --> 00:49:14,480
Speaker 2: medical papers, and I found this paper. I didn't have

1043
00:49:14,520 --> 00:49:17,000
Speaker 2: to do it. I didn't no brilliance. It was literally

1044
00:49:17,680 --> 00:49:23,000
Speaker 2: a Google search on PubMed and saved my uncle's life.

1045
00:49:23,120 --> 00:49:26,200
Speaker 2: And unfortunately it only works in about eighteen percent of patients.

1046
00:49:26,560 --> 00:49:28,359
Speaker 2: But for those eighteen percent that it works and it's

1047
00:49:28,400 --> 00:49:32,399
Speaker 2: completely life changing, it's everything for them. Unfortunately, I wish

1048
00:49:32,440 --> 00:49:34,680
Speaker 2: it worked for everyone with andrew sarcoma, but for those

1049
00:49:34,719 --> 00:49:37,400
Speaker 2: that it does, it's just life changing. And so it

1050
00:49:37,520 --> 00:49:40,480
Speaker 2: required no effort and no works. The world had already

1051
00:49:40,520 --> 00:49:42,279
Speaker 2: done it, and for me, that's when my mindset went

1052
00:49:42,320 --> 00:49:44,160
Speaker 2: to wait a minute. So we've got all these drugs

1053
00:49:44,840 --> 00:49:47,799
Speaker 2: that could potentially help more diseases, and we've even got

1054
00:49:47,840 --> 00:49:49,880
Speaker 2: people doing the research like someone else had done the

1055
00:49:49,920 --> 00:49:52,480
Speaker 2: research in twenty thirteen to prove that this connection was there,

1056
00:49:52,960 --> 00:49:55,560
Speaker 2: but no one's connecting the dots. We're all putting out

1057
00:49:55,640 --> 00:49:57,920
Speaker 2: all these dots all over the world. There's dots everywhere,

1058
00:49:58,320 --> 00:50:02,200
Speaker 2: but there's no entity that's thematically connecting these dots. And

1059
00:50:02,320 --> 00:50:05,520
Speaker 2: we've got to do that, and so so that led

1060
00:50:05,600 --> 00:50:08,040
Speaker 2: me to continue to do more and more drug repurposing,

1061
00:50:08,080 --> 00:50:11,040
Speaker 2: more and more sort of match connecting, matchmaking, if you will,

1062
00:50:12,040 --> 00:50:13,680
Speaker 2: the best I could in my lab here at Penn.

1063
00:50:13,719 --> 00:50:15,520
Speaker 2: We've got a great team, but we can only you know,

1064
00:50:15,640 --> 00:50:18,239
Speaker 2: go so fast. In total, we've done this to total

1065
00:50:18,239 --> 00:50:20,480
Speaker 2: of about fourteen times where we found a new use

1066
00:50:20,520 --> 00:50:22,920
Speaker 2: for medicine and actually help patients with it, which to me,

1067
00:50:23,160 --> 00:50:24,680
Speaker 2: when I think back to the promise I made to

1068
00:50:24,719 --> 00:50:28,120
Speaker 2: my mom, you know, in my wildest dreams, I would

1069
00:50:28,120 --> 00:50:30,719
Speaker 2: have thought maybe one drug. You know, if I have

1070
00:50:30,800 --> 00:50:35,080
Speaker 2: the most incredible career, I will feel so grateful if

1071
00:50:35,280 --> 00:50:39,239
Speaker 2: I can take one drug forward to treat cancer like that,

1072
00:50:39,440 --> 00:50:41,960
Speaker 2: like that, like end of story, and I would feel

1073
00:50:42,040 --> 00:50:44,120
Speaker 2: very grateful. Not many of us in research don't get

1074
00:50:44,160 --> 00:50:46,759
Speaker 2: the chance to do that, but here I am, and

1075
00:50:46,880 --> 00:50:49,560
Speaker 2: I haven't taken one new drug forward in my whole career.

1076
00:50:49,560 --> 00:50:51,839
Speaker 2: I have done a single new drug, but we've taken

1077
00:50:51,960 --> 00:50:55,160
Speaker 2: fourteen old drugs. Tell people with diseases, and you know

1078
00:50:55,239 --> 00:50:57,600
Speaker 2: how much patients care about whether drug is old or

1079
00:50:57,680 --> 00:51:00,640
Speaker 2: new if it saves their life, we don't care at all, right,

1080
00:51:00,920 --> 00:51:02,600
Speaker 2: We literally don't care if it was made for our

1081
00:51:02,680 --> 00:51:04,960
Speaker 2: disease or what. We just care that it saves our lives.

1082
00:51:05,000 --> 00:51:07,120
Speaker 2: And so so it's like, oh, my gosh, I could

1083
00:51:07,120 --> 00:51:09,359
Speaker 2: have spent a whole career maybe to get to one

1084
00:51:09,480 --> 00:51:12,319
Speaker 2: new drug. Or here I am ten years into my career.

1085
00:51:12,360 --> 00:51:15,360
Speaker 2: I've been able to do this fourteen times, with fourteen

1086
00:51:15,719 --> 00:51:19,480
Speaker 2: treatments for diseases they weren't intended for. And so and

1087
00:51:19,560 --> 00:51:22,279
Speaker 2: I'm proud of that. But that's just me and my

1088
00:51:22,320 --> 00:51:24,400
Speaker 2: little old lab here at the University of Pennsylvania. And

1089
00:51:24,400 --> 00:51:26,319
Speaker 2: I shouldn't say little lab. We have an amazing lab

1090
00:51:26,360 --> 00:51:27,560
Speaker 2: here at the University of Pennsylvania.

1091
00:51:27,800 --> 00:51:28,879
Speaker 1: But it's just one lab.

1092
00:51:29,040 --> 00:51:31,920
Speaker 2: Right. What if we could actually and by the way,

1093
00:51:31,960 --> 00:51:34,080
Speaker 2: it's not only just one of that one lab focused

1094
00:51:34,080 --> 00:51:36,560
Speaker 2: on just a few diseases, right, What if we could

1095
00:51:36,560 --> 00:51:38,880
Speaker 2: actually create a system in an organization that looks across

1096
00:51:39,000 --> 00:51:43,520
Speaker 2: all drugs and all diseases simultaneously, right, and matches every

1097
00:51:43,600 --> 00:51:46,719
Speaker 2: single drug versus every disease that it possibly can. And

1098
00:51:47,000 --> 00:51:49,600
Speaker 2: by the way, enter in you know, early twenty twenties

1099
00:51:50,200 --> 00:51:52,760
Speaker 2: artificial intelligence to help us to supercharge us in ways

1100
00:51:52,800 --> 00:51:55,040
Speaker 2: that we never could have before. And so that's why

1101
00:51:55,120 --> 00:51:57,600
Speaker 2: in twenty twenty two, I co founded a nonprofit called

1102
00:51:57,640 --> 00:52:00,800
Speaker 2: Every Cure with one of my dearest friends for medical school,

1103
00:52:00,840 --> 00:52:03,640
Speaker 2: Graham Mitchell, with this idea, this bold idea, that we

1104
00:52:03,760 --> 00:52:07,440
Speaker 2: are actually going to match every drug against every disease

1105
00:52:07,480 --> 00:52:09,960
Speaker 2: that it can possibly treat, and we're going to do

1106
00:52:10,000 --> 00:52:12,440
Speaker 2: it systematically. We're gonna use artificial intelligence, and then we're

1107
00:52:12,480 --> 00:52:14,560
Speaker 2: going to take the best matches for Jeri's people.

1108
00:52:15,480 --> 00:52:18,280
Speaker 1: I you know, I have I struggle with artificial intelligence

1109
00:52:18,320 --> 00:52:20,080
Speaker 1: on my side as a storyteller and as a writer

1110
00:52:20,239 --> 00:52:25,280
Speaker 1: and as a you know, a filmmaker, because I believe

1111
00:52:25,400 --> 00:52:29,040
Speaker 1: that in my case, the writer's block, the suffering is

1112
00:52:29,080 --> 00:52:33,920
Speaker 1: an essential ingredient to growth, to storytelling, to having Aha

1113
00:52:34,000 --> 00:52:36,480
Speaker 1: moments and epiphanies. If you don't, you know, no pain,

1114
00:52:36,600 --> 00:52:39,320
Speaker 1: no gain. Like literally, you know, you can't just go

1115
00:52:39,600 --> 00:52:41,640
Speaker 1: have an AI run a marathon for you any quicker

1116
00:52:41,640 --> 00:52:42,960
Speaker 1: than you can have an a I write a script

1117
00:52:43,040 --> 00:52:45,360
Speaker 1: for you. So for me, I'm like, okay, that's the

1118
00:52:45,400 --> 00:52:48,560
Speaker 1: suffering is sort of part of the process. You can't

1119
00:52:48,800 --> 00:52:51,560
Speaker 1: solve a riddle unless you're stumped by it at first.

1120
00:52:51,600 --> 00:52:53,399
Speaker 1: You won't never have the aha moment unless you first

1121
00:52:53,440 --> 00:52:56,520
Speaker 1: are stumped by the riddle. But you're this situation is

1122
00:52:56,560 --> 00:52:58,840
Speaker 1: one place where I'm like so excited about the potential

1123
00:52:59,160 --> 00:53:02,960
Speaker 1: of leveraging that power. Yep, to see such a wide scope.

1124
00:53:02,960 --> 00:53:06,320
Speaker 1: Can you talk about the scope of drugs versus you know,

1125
00:53:06,880 --> 00:53:09,200
Speaker 1: diseases that it starts to look at and how that

1126
00:53:09,280 --> 00:53:09,919
Speaker 1: process work.

1127
00:53:10,600 --> 00:53:12,960
Speaker 2: Sure, And I think the scope is the big point,

1128
00:53:13,120 --> 00:53:15,440
Speaker 2: big part here for why it's different from what you describe,

1129
00:53:15,480 --> 00:53:17,360
Speaker 2: because right, you know, what we're trying to do is

1130
00:53:17,400 --> 00:53:19,040
Speaker 2: we're trying to look across all drugs and all diseases

1131
00:53:19,080 --> 00:53:20,640
Speaker 2: to find the best matches. That would be like not

1132
00:53:20,760 --> 00:53:22,680
Speaker 2: asking you to write a great script would be saying

1133
00:53:23,080 --> 00:53:26,120
Speaker 2: I want you to write all of the best scripts

1134
00:53:26,200 --> 00:53:29,960
Speaker 2: possible for all theoretically possible movies and then pick the

1135
00:53:30,120 --> 00:53:33,400
Speaker 2: very best ones that you're gonna you know, pitch, you know, like, oh,

1136
00:53:33,440 --> 00:53:36,000
Speaker 2: I can't write seventy five million scripts like you know

1137
00:53:36,080 --> 00:53:38,480
Speaker 2: I could. I can write a couple. And that's the

1138
00:53:38,520 --> 00:53:41,640
Speaker 2: difference between humans and AI here and so so there

1139
00:53:41,680 --> 00:53:43,960
Speaker 2: actually are four thousand drugs in eighteen thousand diseases. So

1140
00:53:44,000 --> 00:53:45,920
Speaker 2: if you tried every drug for every disease, it's actually

1141
00:53:46,040 --> 00:53:50,400
Speaker 2: seventy five million possibilities so us humans, we can't conceive

1142
00:53:50,600 --> 00:53:54,640
Speaker 2: of how effective seventy five million possible drug disease matches are, Like,

1143
00:53:54,719 --> 00:53:57,480
Speaker 2: that's not possible, and we certainly can't then rank among

1144
00:53:57,560 --> 00:54:00,160
Speaker 2: the seventy five million. Oh that's the best one. But

1145
00:54:00,239 --> 00:54:03,400
Speaker 2: that's actually prime for what artificial intelligence is really good at.

1146
00:54:04,000 --> 00:54:06,000
Speaker 2: It's not perfect. It's not where like like you said,

1147
00:54:06,000 --> 00:54:07,879
Speaker 2: it's not like going to deliver the perfect script, where

1148
00:54:07,880 --> 00:54:09,840
Speaker 2: it's like this is number one and you don't actually

1149
00:54:09,920 --> 00:54:11,839
Speaker 2: have to look at any other scripts because, like I said,

1150
00:54:12,040 --> 00:54:14,320
Speaker 2: out of all possibilities, this is the best script that

1151
00:54:14,400 --> 00:54:16,680
Speaker 2: could ever be written for any movie ever. And you

1152
00:54:16,719 --> 00:54:18,759
Speaker 2: could promise me that, like you couldn't do that. Dan

1153
00:54:19,160 --> 00:54:21,560
Speaker 2: AI also can't do that. But what AI can do

1154
00:54:21,680 --> 00:54:23,120
Speaker 2: is it can give us a rank order list of

1155
00:54:23,200 --> 00:54:25,160
Speaker 2: the things at the top are a lot better than

1156
00:54:25,200 --> 00:54:27,960
Speaker 2: things at the bottom. And you, among all of the

1157
00:54:28,040 --> 00:54:31,560
Speaker 2: drug disease possible connections out there, these ones look pretty good.

1158
00:54:31,600 --> 00:54:33,319
Speaker 2: You humans, you should look at these. And so that's

1159
00:54:33,360 --> 00:54:35,080
Speaker 2: what we do, you know, we humans. We look at

1160
00:54:35,080 --> 00:54:38,040
Speaker 2: the top one thousand matches that our AI platform gives

1161
00:54:38,120 --> 00:54:40,840
Speaker 2: us every month, and there's a lot of really promising

1162
00:54:40,880 --> 00:54:43,640
Speaker 2: stuff in there. We actually already have eleven active programs

1163
00:54:43,719 --> 00:54:45,600
Speaker 2: right now, just from the last year of reviewing through

1164
00:54:45,960 --> 00:54:49,319
Speaker 2: the top about ten thousand matches, and so it's doing

1165
00:54:49,360 --> 00:54:52,959
Speaker 2: a good job. I'm surfacing them to us and has.

1166
00:54:52,880 --> 00:54:53,719
Speaker 1: It gotten better? Are you?

1167
00:54:54,040 --> 00:54:54,239
Speaker 2: Are you?

1168
00:54:54,520 --> 00:54:56,480
Speaker 1: Is it optimizing? Is it? Are you training it or

1169
00:54:56,560 --> 00:54:57,680
Speaker 1: is it? Yeah, we're training it.

1170
00:54:57,719 --> 00:54:59,719
Speaker 2: In our selections or training it on what good looks

1171
00:54:59,800 --> 00:55:02,600
Speaker 2: like where That's what's another thing that's great about AI.

1172
00:55:02,640 --> 00:55:05,160
Speaker 2: I mean in the same way that humans can learn, obviously,

1173
00:55:05,360 --> 00:55:08,399
Speaker 2: AI can learn, and so yes, the predictions are getting

1174
00:55:08,440 --> 00:55:12,239
Speaker 2: better and better month a month, and we're just so

1175
00:55:12,480 --> 00:55:16,560
Speaker 2: excited that this is a case where it's something humans

1176
00:55:16,680 --> 00:55:20,120
Speaker 2: could not have possibly done before that AI is perfectly

1177
00:55:20,160 --> 00:55:24,839
Speaker 2: suited for. Right It's the one place where AI gives

1178
00:55:24,880 --> 00:55:25,720
Speaker 2: me so much hope.

1179
00:55:27,000 --> 00:55:31,840
Speaker 1: Into you know, talking about storytelling a little bit, it

1180
00:55:32,000 --> 00:55:35,560
Speaker 1: clearly played a role in mobilizing support and research and awareness. Yeah,

1181
00:55:35,600 --> 00:55:38,160
Speaker 1: why do you think stories move people in ways that

1182
00:55:38,320 --> 00:55:40,239
Speaker 1: data alone never can? I'm sure that part of your

1183
00:55:40,280 --> 00:55:42,840
Speaker 1: marketing and part of what your outreach is has to

1184
00:55:42,920 --> 00:55:45,320
Speaker 1: do with your own story and with storytelling in general

1185
00:55:45,960 --> 00:55:49,160
Speaker 1: and being able to share these stories. But yeah, like

1186
00:55:49,480 --> 00:55:51,560
Speaker 1: I imagine there's a lot of blocks when you come

1187
00:55:51,600 --> 00:55:53,520
Speaker 1: with data. Imagine there's a lot of blocks in the industry,

1188
00:55:53,640 --> 00:55:55,719
Speaker 1: a lot of blocks, you know, whether it's you know,

1189
00:55:55,960 --> 00:55:58,399
Speaker 1: the pharmaceutical industry or the way that the process works

1190
00:55:58,440 --> 00:56:00,800
Speaker 1: with healthcare. Can you talk about some of those and

1191
00:56:01,080 --> 00:56:05,319
Speaker 1: how maybe your story and how the stories of these

1192
00:56:05,400 --> 00:56:07,680
Speaker 1: people that you've helped are able to navigate through some

1193
00:56:07,800 --> 00:56:10,520
Speaker 1: of that clutter. If that makes sense.

1194
00:56:11,000 --> 00:56:13,400
Speaker 2: I think it makes total sense, and I think you've

1195
00:56:13,480 --> 00:56:17,560
Speaker 2: nailed it if you just try to tell people about

1196
00:56:18,200 --> 00:56:20,760
Speaker 2: the opportunity here, and you say there's four thousand drugs,

1197
00:56:21,080 --> 00:56:24,680
Speaker 2: there's eighteen thousand diseases, there's seventy five million possibilities. Drug

1198
00:56:24,760 --> 00:56:27,080
Speaker 2: companies aren't going to move most of these forward because

1199
00:56:27,160 --> 00:56:30,560
Speaker 2: most drugs are already generic, so it's not profitable to

1200
00:56:30,960 --> 00:56:34,399
Speaker 2: advance the vast majority of drugs. We already have talk

1201
00:56:34,440 --> 00:56:37,240
Speaker 2: about how there's no one in our entire healthcare system

1202
00:56:37,320 --> 00:56:41,080
Speaker 2: that takes responsibility for finding new uses for medicines. What

1203
00:56:41,239 --> 00:56:42,759
Speaker 2: you get are a lot of people going, oh, that

1204
00:56:42,840 --> 00:56:46,920
Speaker 2: sounds interesting. But it's the moment you start saying, and

1205
00:56:47,040 --> 00:56:50,800
Speaker 2: I'm alive because of one of those medicines, and Joey's

1206
00:56:50,800 --> 00:56:53,319
Speaker 2: alive because one of those medicines, and Kayla's alive because

1207
00:56:53,320 --> 00:56:56,120
Speaker 2: one of those medicines, and actually sharing those stories about

1208
00:56:56,120 --> 00:56:59,040
Speaker 2: those people. Kayla's going to be a nurse right now.

1209
00:56:59,160 --> 00:57:01,799
Speaker 2: She was supposed to die five years ago, but she's

1210
00:57:01,800 --> 00:57:04,000
Speaker 2: gonna be a nurse because of a bone marrow cancer

1211
00:57:04,120 --> 00:57:07,480
Speaker 2: drug that wasn't made for her disease. Joey's gonna be

1212
00:57:07,560 --> 00:57:09,680
Speaker 2: a finance major and he's in college right now at

1213
00:57:09,680 --> 00:57:14,239
Speaker 2: Tuple University. These people are experiencing life, They're doing things

1214
00:57:14,239 --> 00:57:16,080
Speaker 2: that they wouldn't have done if not for this old

1215
00:57:16,160 --> 00:57:18,520
Speaker 2: drug that wasn't made for their disease. And I think

1216
00:57:18,560 --> 00:57:21,640
Speaker 2: the moment you start making it real by sharing, not

1217
00:57:21,840 --> 00:57:23,680
Speaker 2: just because I think it's you know, one part of

1218
00:57:23,720 --> 00:57:25,280
Speaker 2: it is you could say, well, I'm going to share

1219
00:57:25,720 --> 00:57:29,160
Speaker 2: that it helped this patient, and for me, I just

1220
00:57:29,240 --> 00:57:31,840
Speaker 2: sort of test the stuff on myself, Like hearing that

1221
00:57:31,920 --> 00:57:35,560
Speaker 2: a patient is alive is amazing like that, like that

1222
00:57:35,840 --> 00:57:38,440
Speaker 2: like that means so much. But if you also add

1223
00:57:39,520 --> 00:57:41,480
Speaker 2: then you get to learn what they're doing, Like like

1224
00:57:41,600 --> 00:57:44,000
Speaker 2: when I get to hear, you know, my uncle walked

1225
00:57:44,040 --> 00:57:46,800
Speaker 2: his daughter down the aisle on her wedding day, Like

1226
00:57:47,280 --> 00:57:49,919
Speaker 2: that's actually the thing that gives me the most joy.

1227
00:57:50,000 --> 00:57:51,560
Speaker 2: I mean, obviously, I want him to be alive, and

1228
00:57:51,600 --> 00:57:53,760
Speaker 2: I'm so thankful he's alive, But it's it's that he's

1229
00:57:53,800 --> 00:57:55,400
Speaker 2: alive and he's walking his out or down the is

1230
00:57:55,440 --> 00:57:57,680
Speaker 2: on her wedding day. It's that Kyle is alive and

1231
00:57:57,840 --> 00:57:59,800
Speaker 2: she's going to be a nurse and she's gonna help

1232
00:57:59,840 --> 00:58:01,560
Speaker 2: you people in the future in ways that she never

1233
00:58:01,600 --> 00:58:04,280
Speaker 2: would have before she hadn't gone through what she went through.

1234
00:58:04,960 --> 00:58:07,680
Speaker 2: And it's that it's the texture of what people can

1235
00:58:07,800 --> 00:58:10,760
Speaker 2: do after these things save their lives that I think.

1236
00:58:11,400 --> 00:58:13,760
Speaker 2: I think it's so much more interesting and it's so

1237
00:58:13,880 --> 00:58:16,200
Speaker 2: much more compelling to people. All I want to do

1238
00:58:16,320 --> 00:58:17,840
Speaker 2: is talk about all the people we've helped and the

1239
00:58:17,880 --> 00:58:21,320
Speaker 2: work we're doing, and frankly the programs that we're advancing

1240
00:58:21,400 --> 00:58:23,880
Speaker 2: right now. We're working on a disease right now called

1241
00:58:23,920 --> 00:58:26,760
Speaker 2: Bachmann bup. It's only been diagnosed in about twenty people

1242
00:58:26,800 --> 00:58:30,400
Speaker 2: in the whole world. We've only treated it collectively, this

1243
00:58:30,560 --> 00:58:33,640
Speaker 2: amazing team of researchers, doctor Baco, doctor Bupp, I've only

1244
00:58:33,720 --> 00:58:36,480
Speaker 2: treated collectively six people in the whole world. But this

1245
00:58:36,600 --> 00:58:38,959
Speaker 2: drug has been life changing for five of the six

1246
00:58:39,640 --> 00:58:41,640
Speaker 2: and so if we end up only being able to

1247
00:58:41,920 --> 00:58:44,320
Speaker 2: help dozens or maybe maybe there's hundreds of patients out there,

1248
00:58:45,160 --> 00:58:47,880
Speaker 2: that's going to be amazing and because we're going to

1249
00:58:47,920 --> 00:58:50,520
Speaker 2: make such a deep difference in those people's lives. And

1250
00:58:50,680 --> 00:58:54,480
Speaker 2: so I think for me, it's I've just learned that

1251
00:58:54,640 --> 00:58:58,080
Speaker 2: data is so important. And I've also learned that what

1252
00:58:58,240 --> 00:59:00,480
Speaker 2: someone is doing while they're on a rug that you

1253
00:59:00,600 --> 00:59:02,919
Speaker 2: say save their life, you know, because you save their life,

1254
00:59:03,160 --> 00:59:05,000
Speaker 2: that's data too, you know, I mean it's it's just

1255
00:59:05,080 --> 00:59:07,480
Speaker 2: it's just a different kind of data. Then maybe the

1256
00:59:07,560 --> 00:59:10,120
Speaker 2: four thousand drugs, the eighteen thousand diseases, we can you know,

1257
00:59:10,600 --> 00:59:13,240
Speaker 2: run these analyzes in seventeen hours instead of one hundred days.

1258
00:59:13,240 --> 00:59:17,040
Speaker 2: Those those numbers are important numbers, and and they but

1259
00:59:17,200 --> 00:59:21,520
Speaker 2: I do think that you know, we you know, going

1260
00:59:21,600 --> 00:59:24,000
Speaker 2: back to sort of what this podcast is all about,

1261
00:59:24,280 --> 00:59:27,920
Speaker 2: you know, life and living and making the most of

1262
00:59:28,000 --> 00:59:30,880
Speaker 2: our time. And and when you can share about how

1263
00:59:31,640 --> 00:59:35,479
Speaker 2: this really abstract concept repurposing drugs, using AI to match

1264
00:59:35,600 --> 00:59:38,520
Speaker 2: drugs and diseases, when you share about the people that

1265
00:59:38,640 --> 00:59:40,680
Speaker 2: are alive because of it and what they're able to do,

1266
00:59:40,760 --> 00:59:42,960
Speaker 2: I think that's that's just so important, you know.

1267
00:59:43,080 --> 00:59:46,000
Speaker 1: I we talked to one person who's who brought up

1268
00:59:46,000 --> 00:59:49,840
Speaker 1: a great point, and they had survived this catastrophic event,

1269
00:59:49,880 --> 00:59:51,880
Speaker 1: and they said, you know, I had to look at

1270
00:59:51,920 --> 00:59:54,440
Speaker 1: it and ask myself, you know, what have I lost?

1271
00:59:55,280 --> 00:59:57,480
Speaker 1: And then the next question after they went and reviewed

1272
00:59:57,480 --> 00:59:59,040
Speaker 1: and they were like, Okay, I've lost this, I've lost that,

1273
01:00:00,400 --> 01:00:02,240
Speaker 1: you know in your case, it was like I've lost

1274
01:00:02,280 --> 01:00:05,800
Speaker 1: my ability to walk. And then the next question is okay,

1275
01:00:05,880 --> 01:00:07,880
Speaker 1: so what have you what do you still have? She

1276
01:00:08,200 --> 01:00:11,240
Speaker 1: she asked herself, and then she took inventory of like

1277
01:00:11,320 --> 01:00:13,160
Speaker 1: the things that she still has. She still had a voice,

1278
01:00:13,160 --> 01:00:15,280
Speaker 1: she still had a mind, you know, she still had

1279
01:00:15,280 --> 01:00:18,080
Speaker 1: a heart. And then she's like, what have I gained?

1280
01:00:18,360 --> 01:00:20,480
Speaker 1: Was sort of her last question. And I wanted to

1281
01:00:20,520 --> 01:00:25,160
Speaker 1: ask you the same question, what have you lost?

1282
01:00:25,800 --> 01:00:26,400
Speaker 2: What do you still have?

1283
01:00:26,480 --> 01:00:28,840
Speaker 1: And what have you gained? And you know, just in

1284
01:00:28,920 --> 01:00:32,040
Speaker 1: the simplest terms, after repeatedly surviving what could have killed you,

1285
01:00:32,560 --> 01:00:34,080
Speaker 1: how do you think about your life and how do

1286
01:00:34,120 --> 01:00:35,120
Speaker 1: you think about death? Now?

1287
01:00:36,480 --> 01:00:39,360
Speaker 2: I've got a lot of back. Yeah, no, I've got

1288
01:00:39,360 --> 01:00:46,320
Speaker 2: I've got goosebumps right now because yeah, I mean I

1289
01:00:46,480 --> 01:00:49,520
Speaker 2: never would have thought that it's been fifteen fifteen and

1290
01:00:49,560 --> 01:00:52,120
Speaker 2: a half years since I since I first got sick

1291
01:00:52,160 --> 01:00:55,600
Speaker 2: and almost died, and I just I don't think I

1292
01:00:55,640 --> 01:00:58,320
Speaker 2: could have ever imagined being able to answer the question

1293
01:00:58,680 --> 01:01:00,280
Speaker 2: back then that I'm gonna be able to answer now.

1294
01:01:01,920 --> 01:01:09,840
Speaker 2: So what have I lost? I probably well, I think

1295
01:01:09,880 --> 01:01:12,840
Speaker 2: that I created a lot of sadness for my family

1296
01:01:12,880 --> 01:01:14,560
Speaker 2: and friends when I was so sick, and you know

1297
01:01:14,640 --> 01:01:17,600
Speaker 2: that that it took took you know, joy away from them.

1298
01:01:17,680 --> 01:01:25,720
Speaker 2: Maybe at the time, I think that maybe it's in

1299
01:01:25,760 --> 01:01:27,160
Speaker 2: a good way, I sort of lost a bit of

1300
01:01:27,200 --> 01:01:30,160
Speaker 2: a veil around sort of like how how life works

1301
01:01:30,240 --> 01:01:33,480
Speaker 2: and how you know, things don't always work out the

1302
01:01:33,520 --> 01:01:35,360
Speaker 2: way they're quote unquote is supposed to work out, and

1303
01:01:35,440 --> 01:01:38,160
Speaker 2: sometimes you have to have to turn your hope in action.

1304
01:01:38,600 --> 01:01:40,280
Speaker 2: But the bottom line is that as the reason I'm

1305
01:01:40,280 --> 01:01:43,720
Speaker 2: getting goosebumps is that I'm really struggling to find things

1306
01:01:43,760 --> 01:01:47,400
Speaker 2: that I've lost, which is just mind blowing to me

1307
01:01:47,520 --> 01:01:49,640
Speaker 2: thinking of fact to where I was, you know, fifteen

1308
01:01:49,640 --> 01:01:52,760
Speaker 2: and a half years ago, that that's that's even possible.

1309
01:01:53,360 --> 01:01:57,919
Speaker 2: What do I have? I have the most incredible job

1310
01:01:58,040 --> 01:01:59,840
Speaker 2: in the world where I get to just literally spend

1311
01:01:59,880 --> 01:02:04,240
Speaker 2: my life looking for the most high impact ways to

1312
01:02:04,320 --> 01:02:06,560
Speaker 2: help people, Like, Wow, what could be better than that?

1313
01:02:06,720 --> 01:02:08,680
Speaker 2: You know, I get to put you know, the education

1314
01:02:08,840 --> 01:02:11,240
Speaker 2: I got and the training I've got to just finding

1315
01:02:11,280 --> 01:02:14,480
Speaker 2: things to help people through this nonprofit every cure. I've

1316
01:02:14,560 --> 01:02:18,520
Speaker 2: got two amazing kids, Caitlin and I have these sweet children,

1317
01:02:18,920 --> 01:02:23,680
Speaker 2: Amelia who's seven, and David, who's four. And I've got

1318
01:02:23,720 --> 01:02:26,240
Speaker 2: the most amazing family and friends. And yeah, I mean,

1319
01:02:26,280 --> 01:02:28,400
Speaker 2: what have I gained? It's it's it's all those things

1320
01:02:28,440 --> 01:02:30,040
Speaker 2: that I have right now that I didn't have before,

1321
01:02:31,120 --> 01:02:36,640
Speaker 2: and so it's, uh yeah, it's it's sort of hard

1322
01:02:36,840 --> 01:02:38,600
Speaker 2: hard to believe that I can answer this all these

1323
01:02:38,680 --> 01:02:41,840
Speaker 2: years later and basically say that I've gained a lot

1324
01:02:42,080 --> 01:02:47,400
Speaker 2: and I've I've lost very little. Uh yeah, And I

1325
01:02:47,440 --> 01:02:49,040
Speaker 2: guess maybe the thing that I'm most proud of is

1326
01:02:49,080 --> 01:02:51,120
Speaker 2: that I've been able to help other people gain some

1327
01:02:51,240 --> 01:02:51,600
Speaker 2: things too.

1328
01:02:52,120 --> 01:02:55,800
Speaker 1: Yeah. How do you feel about time now? You know,

1329
01:02:56,000 --> 01:02:58,400
Speaker 1: chasing my cure, you write about urgency and time being

1330
01:02:58,480 --> 01:03:01,880
Speaker 1: non renewable. Yeah, I had a living with that clock

1331
01:03:02,000 --> 01:03:06,160
Speaker 1: change the way that you make decisions. Now, I still

1332
01:03:06,240 --> 01:03:09,800
Speaker 1: feel that same sense of urgency. I still have that

1333
01:03:09,920 --> 01:03:13,680
Speaker 1: feeling of like I can't believe it hasn't come back yet.

1334
01:03:14,280 --> 01:03:16,640
Speaker 2: I'm not gonna, like, you know, push my I'm knock

1335
01:03:16,680 --> 01:03:19,760
Speaker 2: on some wood, but like I can't believe, and you know, like,

1336
01:03:19,880 --> 01:03:21,840
Speaker 2: as long as it's not back, I'm just gonna sort

1337
01:03:21,840 --> 01:03:24,640
Speaker 2: of keep making the most of every second. So my

1338
01:03:24,960 --> 01:03:26,720
Speaker 2: I think my relationship with time is I still have

1339
01:03:26,800 --> 01:03:30,840
Speaker 2: that tremendous sense of urgency. I can't fathom not, you know,

1340
01:03:30,960 --> 01:03:33,240
Speaker 2: making the most of every second and every minute and

1341
01:03:33,280 --> 01:03:37,800
Speaker 2: every day. But I do think that my personality is

1342
01:03:37,880 --> 01:03:39,919
Speaker 2: one where I have to figure out how to balance things.

1343
01:03:41,040 --> 01:03:44,040
Speaker 2: You can probably hear to my voice how excited him

1344
01:03:44,080 --> 01:03:47,120
Speaker 2: about every cure, and you know, the sort of responsibility

1345
01:03:47,160 --> 01:03:49,080
Speaker 2: that I feel like we have given that no one

1346
01:03:49,160 --> 01:03:52,439
Speaker 2: else in our healthcare system is looking for these low

1347
01:03:52,520 --> 01:03:54,600
Speaker 2: hanging fruit and that they're right there and there are

1348
01:03:54,600 --> 01:03:57,520
Speaker 2: people who are suffering today. I mean, imagine the urgency

1349
01:03:57,560 --> 01:03:59,920
Speaker 2: that you feel when it's okay, there's people are suffering

1350
01:04:00,080 --> 01:04:02,000
Speaker 2: right now in a hospital and there's a drug that's

1351
01:04:02,040 --> 01:04:04,600
Speaker 2: in that hospital pharmacy could help them, and the only

1352
01:04:04,680 --> 01:04:08,400
Speaker 2: thing preventing that patient from surviving is how fast we

1353
01:04:08,480 --> 01:04:10,280
Speaker 2: can find that and we can prove it it works

1354
01:04:10,360 --> 01:04:13,280
Speaker 2: to help them. And then add to that, Oh and

1355
01:04:13,400 --> 01:04:15,640
Speaker 2: by the way, David, you're alive because of one of

1356
01:04:15,680 --> 01:04:18,280
Speaker 2: those drugs that was sitting there, so you can feel

1357
01:04:18,320 --> 01:04:20,880
Speaker 2: it every morning you take those medicines. You know, the

1358
01:04:21,040 --> 01:04:23,920
Speaker 2: power of existing medicines to help diseases they weren't intended for.

1359
01:04:25,240 --> 01:04:28,120
Speaker 2: And add to that, you've got the most amazing team

1360
01:04:28,160 --> 01:04:29,960
Speaker 2: in the world that's working on this. So you've got

1361
01:04:30,000 --> 01:04:32,840
Speaker 2: all the potential in the world. And we've fortunately been

1362
01:04:34,280 --> 01:04:37,560
Speaker 2: been able to secure support from these amazingly generous donors

1363
01:04:37,600 --> 01:04:40,240
Speaker 2: who have helped to make every cure possible. And so

1364
01:04:40,920 --> 01:04:43,560
Speaker 2: that creates and then in my case, I've got this

1365
01:04:43,640 --> 01:04:46,680
Speaker 2: amazing wife who's so supportive of me. That creates this

1366
01:04:46,840 --> 01:04:51,440
Speaker 2: perfect storm for really locking in, especially when I tend

1367
01:04:51,480 --> 01:04:53,880
Speaker 2: to lock in on stuff anyway, really locking in and

1368
01:04:53,960 --> 01:04:58,280
Speaker 2: sometimes losing perspective on time and not putting my phone

1369
01:04:58,360 --> 01:05:00,880
Speaker 2: or my laptop away on the weekend or nights, because

1370
01:05:01,280 --> 01:05:03,440
Speaker 2: this thing is in front of me. And so that

1371
01:05:03,720 --> 01:05:04,960
Speaker 2: is something I need to keep working on.

1372
01:05:05,320 --> 01:05:08,360
Speaker 1: It's so interesting, because you're right, we do think about

1373
01:05:08,400 --> 01:05:11,000
Speaker 1: it when we, you know, when we're sick. You know,

1374
01:05:11,000 --> 01:05:12,680
Speaker 1: I've heard it said that you know, we have a

1375
01:05:12,760 --> 01:05:15,400
Speaker 1: million problems, and when you're sick, you'll land one, yeah,

1376
01:05:15,640 --> 01:05:18,240
Speaker 1: you know, and then and to think you're sick and

1377
01:05:18,280 --> 01:05:19,840
Speaker 1: you're thinking, oh, how am I going to do this? Where?

1378
01:05:20,000 --> 01:05:20,120
Speaker 2: Who?

1379
01:05:20,280 --> 01:05:21,840
Speaker 1: Who out there is going to help me? Who out

1380
01:05:21,880 --> 01:05:24,560
Speaker 1: there is going to find the cure? What experimental things

1381
01:05:24,560 --> 01:05:27,160
Speaker 1: are in the works, what's happening. And it's rare that

1382
01:05:27,240 --> 01:05:30,280
Speaker 1: we ever take sort of autonomy, you know, or agency

1383
01:05:30,360 --> 01:05:32,760
Speaker 1: for ourselves and go, well, maybe it's up to me,

1384
01:05:33,680 --> 01:05:35,800
Speaker 1: you know. And look what you're saying is like, there's

1385
01:05:35,840 --> 01:05:38,760
Speaker 1: a drug three floors down that might save my life.

1386
01:05:39,560 --> 01:05:42,480
Speaker 1: It's just miraculous. I just think it's incredible. And I

1387
01:05:42,520 --> 01:05:45,760
Speaker 1: guess last question is, you know, for someone anybody who's

1388
01:05:45,800 --> 01:05:47,400
Speaker 1: living in the middle of their own sort of medical

1389
01:05:47,480 --> 01:05:51,760
Speaker 1: crisis or existential free fall, what would you maybe want

1390
01:05:51,800 --> 01:05:53,160
Speaker 1: to impart to them or want them to know?

1391
01:05:53,760 --> 01:05:56,760
Speaker 2: I think the I think I'd probably say those three

1392
01:05:56,800 --> 01:05:58,880
Speaker 2: things that I share that helped me during my really

1393
01:05:59,000 --> 01:06:01,680
Speaker 2: challenging time. I think I think when you're going through

1394
01:06:01,720 --> 01:06:04,200
Speaker 2: a tough time, you focus on what is that thing

1395
01:06:04,240 --> 01:06:06,360
Speaker 2: that you want to work towards, not what you're facing

1396
01:06:06,440 --> 01:06:07,760
Speaker 2: right now. You know, what is the thing that you're

1397
01:06:07,800 --> 01:06:10,840
Speaker 2: working with, what's that vision for the future. I think

1398
01:06:11,000 --> 01:06:13,919
Speaker 2: really emphasizing that second step, which is having a great

1399
01:06:14,000 --> 01:06:16,760
Speaker 2: team by your side to lock arms with. You know,

1400
01:06:16,840 --> 01:06:19,360
Speaker 2: it might require some tough conversations, but you know, can

1401
01:06:19,440 --> 01:06:21,160
Speaker 2: you have those conversations with your family members and your

1402
01:06:21,200 --> 01:06:23,919
Speaker 2: friends to build that team around you. You know, whatever

1403
01:06:23,960 --> 01:06:25,400
Speaker 2: you got to do, you got to have a great team.

1404
01:06:25,840 --> 01:06:27,640
Speaker 2: And then that third piece of just taking things one

1405
01:06:27,640 --> 01:06:31,840
Speaker 2: step at a time and not letting the big task

1406
01:06:32,360 --> 01:06:36,000
Speaker 2: overwhelm you. Let the big task guide you, let the

1407
01:06:36,080 --> 01:06:38,840
Speaker 2: small tasks be what you focus on day to day,

1408
01:06:38,920 --> 01:06:42,160
Speaker 2: so that way you don't get overwhelmed. And I think

1409
01:06:42,320 --> 01:06:44,800
Speaker 2: that you know, this idea that a drug could be

1410
01:06:44,840 --> 01:06:47,240
Speaker 2: three storyforce down from you in the hospital that could

1411
01:06:47,280 --> 01:06:50,240
Speaker 2: save your life, that can be overwhelming, right. You know,

1412
01:06:50,440 --> 01:06:52,760
Speaker 2: we actually don't always want that sort of agency. We

1413
01:06:52,840 --> 01:06:54,720
Speaker 2: sort of like that like it's in the doctor's court

1414
01:06:54,760 --> 01:06:58,240
Speaker 2: and like the doctor knows best. And I wanted that

1415
01:06:58,320 --> 01:07:00,200
Speaker 2: way too. I wanted my doctor to figure like I

1416
01:07:00,280 --> 01:07:01,880
Speaker 2: want to. You know, I've relied on the doctor, like

1417
01:07:01,920 --> 01:07:04,040
Speaker 2: you figured out this is what you do. There's something

1418
01:07:04,080 --> 01:07:05,800
Speaker 2: that gives us a little bit of peace by doing that.

1419
01:07:06,640 --> 01:07:09,360
Speaker 2: But I think being aware that there are some cases

1420
01:07:09,400 --> 01:07:11,360
Speaker 2: where you can't do that. Some cases you should and

1421
01:07:11,480 --> 01:07:14,600
Speaker 2: like follow exactly what they're saying, but some cases it

1422
01:07:14,720 --> 01:07:17,680
Speaker 2: is actually best for you to question and say is

1423
01:07:17,760 --> 01:07:22,040
Speaker 2: there something else I could do? But to be careful

1424
01:07:22,160 --> 01:07:23,920
Speaker 2: with when you do that, because it could be it

1425
01:07:23,920 --> 01:07:27,360
Speaker 2: could come home quickly overwhelming, if everything that could be

1426
01:07:27,440 --> 01:07:29,840
Speaker 2: done in your life you think could be done differently

1427
01:07:29,880 --> 01:07:32,160
Speaker 2: than the way that it's being done, and that that

1428
01:07:32,320 --> 01:07:34,720
Speaker 2: sort of loss of structure would be really tough.

1429
01:07:36,280 --> 01:07:38,520
Speaker 1: As Tom Hanks or Spielberg come to you yet to

1430
01:07:39,040 --> 01:07:40,720
Speaker 1: figure your life story rights.

1431
01:07:42,000 --> 01:07:47,440
Speaker 2: Actually yes, so Wendy Feinerman, who did Forrest Gump with

1432
01:07:47,600 --> 01:07:53,040
Speaker 2: Tom Hanks, O nail and you actually did, like you

1433
01:07:53,120 --> 01:07:55,680
Speaker 2: actually perfectly nailed it. Just not Spielberg. I guess maybe

1434
01:07:55,680 --> 01:07:58,400
Speaker 2: there's not enough action here for spoop work. But Wendy Feinderman,

1435
01:07:58,720 --> 01:08:01,040
Speaker 2: who produced Forrest Gump and Devil was product and she's

1436
01:08:01,080 --> 01:08:04,880
Speaker 2: got Everest product to coming out the spring. Her she

1437
01:08:05,360 --> 01:08:08,880
Speaker 2: and a group called City Hill Arts have my life

1438
01:08:08,960 --> 01:08:12,120
Speaker 2: rights to turn my Journey into a film and to

1439
01:08:12,640 --> 01:08:15,919
Speaker 2: my book Chasing My Tear into a into a movie

1440
01:08:15,960 --> 01:08:19,120
Speaker 2: that will hopefully share a lot of these lessons, you know,

1441
01:08:19,200 --> 01:08:21,320
Speaker 2: but the things I learned on my deathbed that that

1442
01:08:21,439 --> 01:08:25,000
Speaker 2: we're talking about today will be uh hopefully shared on

1443
01:08:25,040 --> 01:08:25,559
Speaker 2: the big screen.

1444
01:08:25,760 --> 01:08:29,519
Speaker 1: That's fantastic. Well, like you said, there's so many of

1445
01:08:29,600 --> 01:08:33,320
Speaker 1: the stories that it's not just the survival, but what

1446
01:08:33,360 --> 01:08:36,320
Speaker 1: these people are doing now, you know, and walking down

1447
01:08:36,360 --> 01:08:39,680
Speaker 1: the aisle or off to school to you know, to

1448
01:08:39,840 --> 01:08:42,600
Speaker 1: change their lives and better the world. And so, you know,

1449
01:08:42,720 --> 01:08:47,240
Speaker 1: what we've gained is you. We've gained you, and it's amazing. Man.

1450
01:08:47,320 --> 01:08:49,320
Speaker 1: I really appreciate you taking time to talk with us,

1451
01:08:49,600 --> 01:08:53,080
Speaker 1: and this has been a real privilege, and I appreciate

1452
01:08:53,120 --> 01:08:54,360
Speaker 1: you joining us on Alive again.

1453
01:08:54,880 --> 01:08:57,639
Speaker 2: Well. So appreciate you, Dan for giving me the opportunity

1454
01:08:57,680 --> 01:08:59,719
Speaker 2: to share a bit of my story and and also

1455
01:09:00,800 --> 01:09:04,000
Speaker 2: for providing a platform like this for people to think

1456
01:09:04,000 --> 01:09:06,120
Speaker 2: about things that maybe they wouldn't think about otherwise. I

1457
01:09:06,640 --> 01:09:09,280
Speaker 2: certainly wish I hadn't, you know, nearly died five times.

1458
01:09:09,320 --> 01:09:10,599
Speaker 2: I wish that my family don't have to go through.

1459
01:09:10,640 --> 01:09:12,240
Speaker 2: But I learned so much and I appreciate that you've

1460
01:09:12,280 --> 01:09:15,200
Speaker 2: created a platform for people like me to share these

1461
01:09:15,240 --> 01:09:16,360
Speaker 2: things that we learned with others.

1462
01:09:16,800 --> 01:09:18,760
Speaker 1: Is there anything else that you wanted to impart.

1463
01:09:19,160 --> 01:09:21,519
Speaker 2: To us now. I'd love having the chance to share

1464
01:09:21,560 --> 01:09:23,639
Speaker 2: about the work we're doing it every care If anyone

1465
01:09:23,680 --> 01:09:26,000
Speaker 2: wants to follow along, you can find me on social

1466
01:09:26,120 --> 01:09:30,880
Speaker 2: media and Every Cure everycure dot org online you can

1467
01:09:31,160 --> 01:09:33,519
Speaker 2: check out Chasing My Cure sort of you know, available

1468
01:09:33,520 --> 01:09:36,760
Speaker 2: everywhere books are sold and just yeah, so appreciate the

1469
01:09:36,800 --> 01:09:39,240
Speaker 2: opportunity to share with you and your crew.

1470
01:09:39,560 --> 01:09:41,280
Speaker 1: Thank you for your time. We'll put all of this

1471
01:09:41,439 --> 01:09:43,160
Speaker 1: in the in the show notes as well so people

1472
01:09:43,240 --> 01:09:44,960
Speaker 1: can click and find you cool.

1473
01:09:45,240 --> 01:09:46,880
Speaker 2: Thank you so much, well, thanks so much, Dan, I

1474
01:09:46,920 --> 01:09:48,320
Speaker 2: really appreciate this. This is awesome.

1475
01:10:01,000 --> 01:10:04,000
Speaker 1: To learn more about David's work accelerating cures for rare

1476
01:10:04,160 --> 01:10:08,240
Speaker 1: and neglected diseases, visit every Cure at everycure dot org.

1477
01:10:08,640 --> 01:10:11,040
Speaker 1: You can also explore his earlier work through the Casselman's

1478
01:10:11,080 --> 01:10:14,760
Speaker 1: Disease Collaborative Network, which continues to support patients and drive

1479
01:10:14,800 --> 01:10:18,840
Speaker 1: research worldwide. David's personal story and scientific journey are also

1480
01:10:18,920 --> 01:10:22,360
Speaker 1: chronicled in his book Chasing My Cure, a powerful account

1481
01:10:22,439 --> 01:10:29,880
Speaker 1: of what can happen when survival turns into purpose. Our

1482
01:10:29,960 --> 01:10:34,080
Speaker 1: story producers are Dan Bush, Kate Sweeney, Brent die Nicholas

1483
01:10:34,160 --> 01:10:38,639
Speaker 1: Dakoski and Lauren Vogelbaum. Music by Ben Lovett, additional music

1484
01:10:38,720 --> 01:10:42,560
Speaker 1: by Alexander Rodriguez. Our executive producers are Matthew Frederick and

1485
01:10:42,600 --> 01:10:46,519
Speaker 1: Trevor Young. Special thanks to Alexander Williams for additional production support.

1486
01:10:47,320 --> 01:10:50,559
Speaker 1: Our studio engineers are Rima L. Kali and Nomes Griffin.

1487
01:10:51,360 --> 01:10:54,840
Speaker 1: Our editors are Dan Bush, Gerhart Slovitchka, Brent Dye, and

1488
01:10:54,920 --> 01:10:59,439
Speaker 1: Alexander Rodriguez. Mixing by Ben Lovett and Alexander Rodriguez. I'm

1489
01:10:59,439 --> 01:11:02,560
Speaker 1: your host, Dan Bush. Alive Again is a production of

1490
01:11:02,600 --> 01:11:06,680
Speaker 1: iHeartRadio and Psychopia Pictures. If you have a transformative near

1491
01:11:06,760 --> 01:11:09,240
Speaker 1: death experience to share, we'd love to hear your story.

1492
01:11:09,680 --> 01:11:14,200
Speaker 1: Please email us at Alive Again Project at gmail dot com.

1493
01:11:14,720 --> 01:11:17,840
Speaker 1: That's a l I V E A g A I

1494
01:11:18,080 --> 01:11:22,040
Speaker 1: N P R O j E c T at gmail

1495
01:11:22,080 --> 01:11:22,519
Speaker 1: dot com.