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The Strength To Move Through with Will Monlux · The Trauma Therapist

0:00
Speaker 1: Welcome to the Trauma divers podcast. My name is Guim Ferson,
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Speaker 1: and I interview incredible people who share the story of
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Speaker 1: how trauma has shaped their lives. And a big thank
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Speaker 1: you for sponsoring today's episode goes to my guest and
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Speaker 1: our sponsors. So five four three, I just want to start.
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Speaker 1: So you're kind of dark again. We want to make
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Speaker 1: sure we get some light in here. I don't want
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Speaker 1: it to be just all yeah, yep, yeah, all right,
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Speaker 1: said I matter no words. Yeah, it's most great. Thanks man,
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Speaker 1: all right. So five four three, two and one, our folks,
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Speaker 1: welcome back to the podcast. Very excited fans. My guest today,
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Speaker 1: Will Monoluques, will welcome.
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Speaker 2: Thank you having for having me.
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Speaker 1: Will lives with stage four cancer. But a story is
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Speaker 1: defined by more than in diagnosis. It's shaped by the
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Speaker 1: people and communities who stupid sidehead, the moments of connection
1:01
Speaker 1: that gave him strength, and the belief that meaning can
1:03
Speaker 1: be found even in life's most uncertain chapters. As Chief
1:08
Speaker 1: Advocacy Officer at one Link, he works to help patients
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Speaker 1: with life threatening illness and access potentially life saving treatments.
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Speaker 1: Some compassionate use, clinical trials, and other pathways often overlooked
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Speaker 1: and standard care runs out. He also helps lead Wonder Voices,
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Speaker 1: a nationwide project that delivers handwritten cards, drawings, and messages
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Speaker 1: of encouragement to people fighting cancer. At the heart of
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Speaker 1: his work as a commitment to foster from agency connection
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Speaker 1: and hope. All right, well again, just a little bit
1:40
Speaker 1: about you. Welcome to the podcast. But before we get
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Speaker 1: go and share with the listeners where you're from originally
1:46
Speaker 1: and where you are currently.
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Speaker 2: So I'm originally from Washington State. I grew up in
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Speaker 2: Northwest and now I live in Tampa well Saint Petersburg, Florida.
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Speaker 1: Okay, how did the start? How the hell did all
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Speaker 1: the start for me?
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Speaker 2: So? I was diagnosed with cancer back in December of
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Speaker 2: twenty twenty two, and I was just about to turn thirty.
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Speaker 2: And it was kind of crazy because I was diagnosed
2:18
Speaker 2: at a stage where I was kind of recovering from
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Speaker 2: a trauma beforehand, and I was just starting to get
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Speaker 2: back on my feet, and like right when I was
2:26
Speaker 2: applying to med school, like starting this new chapter in
2:28
Speaker 2: my life, I get stage four cancer and like, without
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Speaker 2: treatment it was gonna be four months and then like
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Speaker 2: liver cancer is a pretty bad cancer. So like prognosis
2:41
Speaker 2: was like very bad, but like that diagnosis was not
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Speaker 2: like if you would have expected that I got that beforehand,
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Speaker 2: I would have been like, oh man, it's over. But
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Speaker 2: like cancer has been in many ways of a recovery
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Speaker 2: for me. It helped me to go overcome like where
2:59
Speaker 2: I was stuck before and like I'm doing the best
3:02
Speaker 2: I've done like in my adull life now and like
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Speaker 2: that's something that is like completely counterintuitive, but it's been
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Speaker 2: a very wild ride. Though.
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Speaker 1: Okay, obviously that's that's the broad brushstroke of what's going on.
3:18
Speaker 1: But you said that prior to being diagnosed, you know,
3:24
Speaker 1: we're recovering from a trauma. What same more about that?
3:28
Speaker 2: Uh So I don't like you want me to go?
3:31
Speaker 2: It was kind of I think what was challenging about
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Speaker 2: it was it was a very abusive situation that affected
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Speaker 2: me in ways that was hard to explained, and like
3:41
Speaker 2: one of the things that cancer has helped and that
3:44
Speaker 2: like I think a foundational part of how I was
3:47
Speaker 2: struggling was like being able to vocalize, Like that's such
3:53
Speaker 2: a core part of my identity as like resilience that
3:56
Speaker 2: like that had affected me in the way that it
3:58
Speaker 2: had was like really hard, and I'm just trying to think.
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Speaker 2: I don't know how deep you want me to go
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Speaker 2: into thay.
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Speaker 1: This well, as deep as you're comfortable in sharing, of course,
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Speaker 1: and that goes with everything here. You don't have to
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Speaker 1: talk about anything you don't feel comfortable talking about. But
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Speaker 1: I think it's it's pertinent to what we're talking about here.
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Speaker 1: So if you said you're you're getting over a trauma,
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Speaker 1: we're not talking about where are we talking about an
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Speaker 1: emotional trauma? Abuse in this case? Okay, So you involved
4:32
Speaker 1: an abusive relationship or situation that you were coming to
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Speaker 1: terms with kind of getting over working through.
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Speaker 2: Yeah, I mean what happened, Like I was in a
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Speaker 2: really abusive situation, and like when I left, I had
4:51
Speaker 2: at one point of like I had like an anophasia
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Speaker 2: where I couldn't like visualize, and like I was trying
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Speaker 2: to like Michal I'd always going to go to medical
5:00
Speaker 2: cool and that guys, I was trying to get back,
5:02
Speaker 2: like I was a very diminished version of myself after
5:05
Speaker 2: having gone through all that, and so I was like
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Speaker 2: kind of processing that and also the fact that like
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Speaker 2: I wasn't functioning like I used to and just as
5:18
Speaker 2: I started to like regain like my cognitive ability from
5:21
Speaker 2: before is when I got cancer.
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Speaker 1: And so, how did you get diagnosed? The situation that
5:30
Speaker 1: brought you to the doctors in the first place, it.
5:33
Speaker 2: Was I had like some abdominal pain. One of the
5:37
Speaker 2: challenges with liver cancer is you don't usually can't catch
5:40
Speaker 2: it till very late, and so I thought, like worst
5:43
Speaker 2: case scenario was like a penicitis, but it turned out
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Speaker 2: to be like stage four liver cancer, Like seventy percent
5:52
Speaker 2: of my liver was cancer. And I also have a
5:55
Speaker 2: testize to my spine.
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Speaker 1: And so I like, okay, slowly, sorry, no no, no, no, no,
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Speaker 1: So were there From what you said, it sounds like
6:06
Speaker 1: there were no indications that beyond the pain in your
6:09
Speaker 1: abdomen that there was something crazy going on.
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Speaker 2: I mean retrospectively, there were some like I had, you know,
6:18
Speaker 2: I was vomiting and diarrhea, but that doesn't scream like
6:22
Speaker 2: liver cancer. And I think another big one that I
6:25
Speaker 2: was hidden was like my fatigue levels. And I think
6:28
Speaker 2: that was kind of hidden because like I was recovering
6:30
Speaker 2: from the place I was very depressed and like frozen,
6:33
Speaker 2: and I didn't really comprehend that, you know, I don't
6:38
Speaker 2: know if that's our way to say it, but like
6:40
Speaker 2: it was mixed in with like not realizing like this
6:43
Speaker 2: is I should get this checked out for like potentially
6:47
Speaker 2: being I would have never thought youth.
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Speaker 1: So you go to the doctor, they run some tests.
6:56
Speaker 1: Do they tell you right there or do they say
6:58
Speaker 1: or I'll get back to you when ever.
7:00
Speaker 2: No, it was immediate like.
7:04
Speaker 1: Yeah, are there alone?
7:09
Speaker 2: Yeah, So my Dada dropped me off and he just
7:12
Speaker 2: left because we thought this was just I was just
7:14
Speaker 2: gonna take an uber later. And they kept on doing
7:18
Speaker 2: more and more tests because I think they didn't want
7:20
Speaker 2: to bring the potential news to me without being sure.
7:23
Speaker 2: And so I was there like three hours of just
7:25
Speaker 2: they keep on doing more and more things than he
7:27
Speaker 2: comes in and he hits me with like I've never
7:30
Speaker 2: seen a tumor this large before, Like we don't know
7:33
Speaker 2: for sure if it's cancer yet, like we're throwing more tests,
7:37
Speaker 2: but like I just want to prepare you for were
7:39
Speaker 2: you probably are be hearing the next couple of days.
7:42
Speaker 2: And he pretty much laid out exactly what I ended
7:44
Speaker 2: up being right then and that I got that all
7:48
Speaker 2: at once. Also in my phone said, So I was
7:50
Speaker 2: like I got shocked into that diagnosis.
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Speaker 1: Okay, so how do you how do you? How do
7:59
Speaker 1: you do that? I can't imagine.
8:03
Speaker 2: I mean that was like the jolt of like I mean,
8:08
Speaker 2: I think kind of what happens like as a trauma
8:10
Speaker 2: response is like you tie yourself up in like some
8:13
Speaker 2: ropes that Like, I mean, the metaphor I kind of
8:17
Speaker 2: used that wrote about was like there's the metaphor of
8:20
Speaker 2: like the elephant and a rope, and like the elephant
8:23
Speaker 2: kind of learns to be trapped back because of like
8:25
Speaker 2: what was tied there before, and like the rope can
8:29
Speaker 2: still hold it even when that danger is no longer present.
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Speaker 2: And like I think one thing that happened was you
8:35
Speaker 2: know you can kind of use ropes is to protect
8:37
Speaker 2: yourself even if they don't like suret serve any kind
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Speaker 2: of purpose. And what happened when cancer comes, it's like
8:45
Speaker 2: here's Johnny with like the acts coming and it's like
8:48
Speaker 2: he doesn't care if you tie yourself up to like
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Speaker 2: protect yourself. It's you're faced with like immortality. And that
8:56
Speaker 2: liberated me. And like when I had that liberation of
8:59
Speaker 2: like no longer we're being tied to like that trying
9:02
Speaker 2: to make meaning of my trauma that I was liberty
9:06
Speaker 2: to kind of like live life. And then like even
9:10
Speaker 2: with that like big diagnosis of when I was being diagnosed,
9:14
Speaker 2: like the first months were actually the best I had
9:17
Speaker 2: in my years, which again is not something we would expect.
9:21
Speaker 2: But I mean it kind of my my recovery from
9:25
Speaker 2: trauma and my cancer have been very much in a time,
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Speaker 2: and I don't know, it's just I would never expected
9:33
Speaker 2: this experience.
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Speaker 1: Well let's let's get there. But so you are told
9:40
Speaker 1: this news, I mean obviously you're shocked. At some point
9:47
Speaker 1: you walk out of there. Who do you call? Who
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Speaker 1: you tell?
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Speaker 2: Well? I called my best friend that night once I
9:55
Speaker 2: got some charge, I was like, I can't wait, I
9:57
Speaker 2: need a charger. I'm gonna call him. And then I
10:00
Speaker 2: told them and then it was just kind of like
10:06
Speaker 2: a lot of things happen real quick.
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Speaker 1: I had, like I don't want sorry. So they told
10:12
Speaker 1: you stage four? Did they say you just talked a
10:14
Speaker 1: little bit about the prognosis. How did they roll that
10:17
Speaker 1: information out on you?
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Speaker 2: So? I mean I had the initial with the Eerdopera
10:23
Speaker 2: gave me everything, and then they kind of were like
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Speaker 2: there's no way that this is possible, and so they
10:28
Speaker 2: kind of were like backtracking, and it was like, Okay,
10:31
Speaker 2: the next thing you can do is like a reception
10:33
Speaker 2: or you can do a transplant, like these are all
10:35
Speaker 2: the things you can do to treat it. But like
10:37
Speaker 2: solely it's like those aren't options when you have stage
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Speaker 2: four metastatic liver cancer. And so it goes from like
10:45
Speaker 2: this is bad to like, okay, we can do this.
10:47
Speaker 2: You know, we can do this. Actually we only have
10:50
Speaker 2: palliated options, and it kind of was like that framework.
10:55
Speaker 2: And then after my initial stay I think was like
10:58
Speaker 2: between two and three weeks, and when they were discharging me,
11:02
Speaker 2: it was going to get like immune therapy, which it's
11:07
Speaker 2: just palliative. But like also the whole time, my situation
11:11
Speaker 2: was kind of unique that I didn't have any risk
11:15
Speaker 2: factors for liver cancer. I have a healthy liver. It
11:19
Speaker 2: was kind of a likely cause from like an acute
11:22
Speaker 2: liver injury.
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Speaker 1: And so.
11:27
Speaker 2: Because it's healthy, like I can my liver can take
11:31
Speaker 2: a lot more, like it can be much more massive
11:34
Speaker 2: and still be able to do a procedure. And so
11:38
Speaker 2: like at the beginning, the goal was still if we
11:41
Speaker 2: can just shrink these tasks in the I had five
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Speaker 2: in my left lobe, and my right lobe was all cancer.
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Speaker 1: Your lobe you're talking about lungs.
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Speaker 2: For the of the liver, of the liver lob, well,
11:56
Speaker 2: with the liver was just completely cancer. And if I
11:59
Speaker 2: caught it a little bit earlier, they could have stopped it.
12:01
Speaker 2: But like I had five tiny metastasies and the other one,
12:05
Speaker 2: and so the initial goal was like neotherapy theoretically could
12:08
Speaker 2: reduce them so that they could do surgery, but it's
12:11
Speaker 2: still considered a paliat of treatment unless they're doing surgery.
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Speaker 1: So how do you ingest all this information? What do
12:22
Speaker 1: you what do you think it?
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Speaker 2: Well, I mean it's like with cancer, you know what's
12:31
Speaker 2: coming at you, and like being able to I think
12:35
Speaker 2: a hard thing for me was like I mean with cancer,
12:39
Speaker 2: like I kind of reinfirmed that like I am, like
12:42
Speaker 2: there's that like mental core. Part of my identity is
12:45
Speaker 2: like mental strength and like like I know that, like
12:49
Speaker 2: I'm resiliing with being able to go through like certain
12:51
Speaker 2: things cancer throws at me. And I think part of
12:54
Speaker 2: that like getting thrown stuff at me and realizing like
12:57
Speaker 2: I'm still here and like I'm still moving forwards, like
13:00
Speaker 2: regain that sense of like internal mental strength, like thinking
13:03
Speaker 2: that I was, and that helped me even more when
13:07
Speaker 2: I started to you know, more things and more things
13:11
Speaker 2: went wrong as cancer progressed, and like the acceptance of
13:16
Speaker 2: like I didn't immediately accept like mortality, like when you're
13:20
Speaker 2: presented that, Like there's different stages of acceptance, and like
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Speaker 2: I had the first one was like this is my situation,
13:29
Speaker 2: Like just make the most of my time, and like
13:31
Speaker 2: my core passion is like having a positive act in
13:34
Speaker 2: my communion. Like all the things that kind of felt
13:37
Speaker 2: like they're holding me back before they don't matter because
13:40
Speaker 2: I might not happen any time left. So like I
13:42
Speaker 2: just focused on what I can do in my time,
13:45
Speaker 2: and that's kind of what I've That's all I was
13:48
Speaker 2: focusing on. But like then the reality of cancer becomes
13:51
Speaker 2: stronger and stronger, and like your body deteriorates, and it's
13:54
Speaker 2: like balancing those difference.
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Speaker 1: Okay, let me just take a break here. First of all,
14:01
Speaker 1: I mean, Jesus striaing Christ No, come on, I mean
14:06
Speaker 1: the fact that you're coming on here and sharing this
14:09
Speaker 1: is incredible. I really appreciate it. But from what you're
14:13
Speaker 1: saying it sounds like admittedly you had this mental strength,
14:19
Speaker 1: thank god. Yeah, I mean but even still, I mean,
14:26
Speaker 1: to confront mortality is your do you have a family?
14:32
Speaker 1: Is your mom in the picture, your siblings or what?
14:35
Speaker 2: Yeah? My family is incredibly supportive. Yeah, and like my
14:40
Speaker 2: friends have been super supportive.
14:49
Speaker 1: How do you what are you telling yourself when you're
14:58
Speaker 1: confronted with this? Are you just like fuck this, I
15:03
Speaker 1: gotta get going. I need to do X, Y and Z.
15:06
Speaker 1: You mentioned that things that you felt were holding you
15:08
Speaker 1: back previously, No more talk talk about that.
15:14
Speaker 2: Well, I think a challenge with like traumas like wanting
15:18
Speaker 2: like the pain to like have served some purpose, but
15:21
Speaker 2: like when you're confronted with like I might be dying
15:25
Speaker 2: erris and like, but I still want to contribute, and
15:30
Speaker 2: like it's that you're just not held back anymore. And
15:36
Speaker 2: so once I was able to start, I think the
15:41
Speaker 2: thing that's challenging is like with death too, is one
15:47
Speaker 2: one thing I think with the whole coming to a
15:51
Speaker 2: greater acceptance of one. Mortality is like for me, death
15:56
Speaker 2: is kind of like a mirror and like as as
16:01
Speaker 2: like when you're not forced to stare at your own
16:06
Speaker 2: mortality it's kind of like that tiger that's in the bushes,
16:09
Speaker 2: like you know it's there. It's scary at times in
16:12
Speaker 2: life it comes closer and has more power over you,
16:14
Speaker 2: but like it always, you can your mind.
16:18
Speaker 3: Can put it away and it doesn't hold the same power,
16:22
Speaker 3: but it also holds more power in a sense that
16:25
Speaker 3: you can build it up when you're in situations where
16:27
Speaker 3: you feel more vulnerable.
16:29
Speaker 2: But like as more and more parts of just your
16:33
Speaker 2: life are stripped away, like things parts of your identity
16:37
Speaker 2: that you think are like parts of you, like dreams,
16:42
Speaker 2: like things you want to strive for, like any kind
16:46
Speaker 2: of like attachment like that isn't like a core part
16:49
Speaker 2: of yourself. And like as those things are stripped away,
16:52
Speaker 2: because you know, as the disease progress and cancer got
16:55
Speaker 2: worse and worse, and like my independence is even a
16:59
Speaker 2: stript way in a sense, like what you do have
17:03
Speaker 2: becomes much more crystal clear, and I think it really
17:08
Speaker 2: first of all, like deafine loses a told on you,
17:11
Speaker 2: and also like there's just like a crystal clear like
17:15
Speaker 2: acceptance of like oneself and just I'm not sure what
17:19
Speaker 2: the question was now, I'm sorry. It's just like being
17:26
Speaker 2: forced to stay with your mortality and being a good teacher.
17:30
Speaker 1: You just remind everyone. I'm speaking with Will Monlocks. He
17:34
Speaker 1: is a chief Advacy officer at Wonderlink. Let's talk about
17:43
Speaker 1: Wonderlink and what you're doing there, but before we do,
17:48
Speaker 1: share with us, where are you now? What you talked
17:53
Speaker 1: about independence being kind of limited. What's your treatment? Like?
17:58
Speaker 1: Are you what kind of treatments are you receiving?
18:02
Speaker 2: So I failed off of like all the first and
18:06
Speaker 2: second line treatments, and then I failed out of a
18:08
Speaker 2: clinical trial and I got to a point where I
18:10
Speaker 2: was recommended to hospice and there's like no options available.
18:15
Speaker 2: And generally speaking, when your health is at that point,
18:17
Speaker 2: you never get into any kind of future clinical trial
18:21
Speaker 2: because like you're it's you're just not a good Like
18:29
Speaker 2: even if there's a drug that might work really well
18:31
Speaker 2: for you, you're not a good candidate for the drug
18:33
Speaker 2: because there's so many compounding factors to that. And I
18:38
Speaker 2: was able to get it through compassionate use, which is
18:41
Speaker 2: when you kind of get access to a drug that's
18:44
Speaker 2: in development that's not through a clinical trial per se.
18:49
Speaker 2: That is a really challenging process, and that's one of
18:51
Speaker 2: the things that we're working on helping there be greater
18:57
Speaker 2: awareness for and more people have chances like me. But
19:01
Speaker 2: once I when I got onto that treatment I had,
19:05
Speaker 2: I was on dialysis. I well, I had just gone
19:07
Speaker 2: off dalysis at that point, but like nothing had ever worked.
19:11
Speaker 2: And I mean my in eventional radiologist joke that I
19:14
Speaker 2: had staged nine cancer was like as bad as you
19:16
Speaker 2: could get. Over the course of the next year the cancer.
19:22
Speaker 2: A couple of months ago, I had a pet scan
19:24
Speaker 2: that showed there was no cancer in the liver. And
19:29
Speaker 2: a year after having been recommiting for hospice, I did
19:32
Speaker 2: a sprint trathlon and then recently I did a full one.
19:38
Speaker 1: Yeah Jesus.
19:42
Speaker 2: That that trathlone was really like, I mean, that was
19:45
Speaker 2: part of just like we came reclaiming a sense of agency.
19:49
Speaker 2: And then once I did that, like that first one
19:52
Speaker 2: kind of happened in April. The last couple of months
19:54
Speaker 2: had been like more of like completely processed in trauma
19:58
Speaker 2: to get to the point where I can talk more
20:00
Speaker 2: openly about things. But like more recently I did have
20:05
Speaker 2: some not so great news. What happens sometimes with cancer
20:09
Speaker 2: is uh, it's can if it has a mutation, it
20:16
Speaker 2: can kind of bloom, and so I did kind of
20:18
Speaker 2: have a flare up, so it's blooming a little bit,
20:21
Speaker 2: and so we have to change up my treatment. But
20:24
Speaker 2: you know, I'm still in I haven't been this healthy
20:27
Speaker 2: since before cancer, like totality of health too. So but
20:33
Speaker 2: it's still a roller coaster cancer. So roller coaster.
20:37
Speaker 1: I don't we understand that how do you go from
20:39
Speaker 1: having stage four stage nine cancer to being incredibly healthy.
20:45
Speaker 2: So one thing one of the things that's really I'm
20:49
Speaker 2: really optimism for for like the future of cancer treatments
20:52
Speaker 2: is there's a new frontier of like precision medicine where
20:57
Speaker 2: based off like your unique genetic profile, while they can
21:01
Speaker 2: target your cancer specifically. And so my cancer had two
21:05
Speaker 2: mutations where you know, nothing had worked, like I failed everything,
21:11
Speaker 2: and then I got this new treatment and suddenly, like
21:14
Speaker 2: the tumor at its most was like thirty centimeters for
21:18
Speaker 2: the primary and then the other ones were like in total,
21:24
Speaker 2: I've had like at least forty centimeters of cancer wiped out.
21:28
Speaker 2: I mean it's back now, so I don't really know
21:30
Speaker 2: some of its backs. I don't know what it is.
21:33
Speaker 2: But the question was, sorry I got distracted, but yeah,
21:40
Speaker 2: I mean there's just a lot what is possible now
21:45
Speaker 2: with cron oncology, Like it's really exciting based off what
21:48
Speaker 2: they can do by tipping your cancer specifically.
21:52
Speaker 1: All right, let's talk about wonderments. What is it? How
21:54
Speaker 1: did you get involved with it?
21:57
Speaker 3: So?
21:58
Speaker 2: Wondering is so it was kind of the passion project
22:02
Speaker 2: of doncologists who really saved my life. We were as
22:10
Speaker 2: I was failing out of treatment, we were looking at,
22:14
Speaker 2: you know, what is the potential next step, and it
22:18
Speaker 2: just so happened my dad reached out to her. She
22:21
Speaker 2: written a paper about a study that was really promising myself.
22:26
Speaker 2: It had a similar mutation as mine, and it just
22:29
Speaker 2: so happened that she had wonderlink was kind of like
22:35
Speaker 2: her passion project. She helps patients. It's kind of just
22:40
Speaker 2: been like her passion project. And I ended up getting
22:46
Speaker 2: connected to the drug through her, and you know, then
22:51
Speaker 2: my story changed. And then kind of her and her
22:55
Speaker 2: husband had you know, been working on this, but like
23:01
Speaker 2: more recently and like unfortunate I got involved, and like
23:07
Speaker 2: it's really started to fundalize more into like we started
23:10
Speaker 2: the foundation a couple of months ago and are taking
23:12
Speaker 2: steps forward to making like, you know, stories like mine
23:15
Speaker 2: more possible.
23:17
Speaker 1: So what does it do specifically does it bring treatments.
23:21
Speaker 2: To So right now our primary goal is actually, well,
23:26
Speaker 2: our two primary goals are building up a database of
23:32
Speaker 2: the compassionate use drugs. I think one of the challenges
23:37
Speaker 2: that currently exists is there is legislation that requires the
23:45
Speaker 2: pharmaceutic companies to disclose and like if someone reaches out
23:49
Speaker 2: for expanded access, like it's the Cures Act, makes it
23:53
Speaker 2: so like you're supposed to respond. I mean, there's a
23:56
Speaker 2: lot of logistical barriers that exist, and there's no like
23:59
Speaker 2: clear cut solution, but like at least hearing a no
24:03
Speaker 2: if a knows the answer, is better than not hearing
24:06
Speaker 2: it at all. And so the first but what happens is
24:11
Speaker 2: like oftentimes like patients don't hear back, and the legislators
24:16
Speaker 2: made it so like they're supposed to at least disclose
24:19
Speaker 2: their policy and get back within whatever time prayer they said.
24:24
Speaker 2: And so our first goal, I guess is raising awareness
24:27
Speaker 2: for compassion use and expanded access and also building up
24:31
Speaker 2: a database where it shows clearly the policies for these places,
24:36
Speaker 2: so you're never like sitting in the dark with trying
24:40
Speaker 2: to figure out if this is an option. So that's one.
24:44
Speaker 1: Define compassionate use first.
24:46
Speaker 2: So compassion use is like a pathway through the FDA. Also,
24:51
Speaker 2: it is also called expanded access, where if you are
24:56
Speaker 2: not within a clinical trial, like if you don't fit
24:59
Speaker 2: the parameters to be accepted within a normal clinical trial,
25:02
Speaker 2: that you can still get access to clinical trial medicine
25:06
Speaker 2: through compassion use. And so you're kind of there's multiple
25:12
Speaker 2: ways they do it. They can either do a single
25:15
Speaker 2: patient one of one, uh what I am, or they
25:19
Speaker 2: can do like cohorts of patients like that are in
25:23
Speaker 2: compassion use. But basically it's a way to get access
25:26
Speaker 2: to drugs if you're not in the main clinical trial.
25:30
Speaker 1: Okay, so as you kind of wind down here, what
25:36
Speaker 1: what what? What do you want to say? What's your
25:39
Speaker 1: what's your message to people you talk to?
25:44
Speaker 2: Now? I guess I mean there's multiple ones, like one
25:48
Speaker 2: of them like from like I think a core part
25:52
Speaker 2: in cancer is it's so easy to like lose your
25:56
Speaker 2: sense of agency in the process, like it is in
25:58
Speaker 2: many ways like a a constant passive trauma, where like
26:03
Speaker 2: you can feel like very powerless to do anything. And
26:07
Speaker 2: so I think it's incredibly important through to have a
26:12
Speaker 2: sense of agency and move forward towards hope even if
26:15
Speaker 2: it isn't you know, hope, how you defined it like before?
26:19
Speaker 2: And so I guess one of my sorry I lost
26:24
Speaker 2: track with your question. I guess one of them is just, uh, sorry,
26:28
Speaker 2: I really lost.
26:29
Speaker 1: My trying to My question was what do you want
26:33
Speaker 1: people to hear? What's your message in the sense.
26:39
Speaker 2: Well, in the context of this podcast, I guess it
26:42
Speaker 2: would be I think trauma is like it's can be
26:52
Speaker 2: a really hard thing to like define the idea hard thing. Two,
26:59
Speaker 2: I don't I'm not sure. I guess kind of. I
27:03
Speaker 2: just wanted to present that, you know, you wouldn't usually
27:06
Speaker 2: think that trauma and like growth and like cancer could
27:16
Speaker 2: all intersect as being something where you can still move
27:20
Speaker 2: forward and like just I guess my message is just
27:24
Speaker 2: like that, there's always like hope and to keep moving
27:27
Speaker 2: forward to something. Sorry, that's not clear at all.
27:33
Speaker 1: No no words at all. Man. When you started this
27:40
Speaker 1: after your diagnosis, and you know, we often hear people
27:44
Speaker 1: talk about, you know, okay, doing all this research or
27:48
Speaker 1: having your families do all this research about treatments, alternative treatments,
27:52
Speaker 1: any kind of treatments. Did you go down that path
27:55
Speaker 1: at all.
27:57
Speaker 2: I did so like when I was first diagnosed, So
28:03
Speaker 2: my dad, I'm really fortunate my dad's a position sert
28:05
Speaker 2: as a background in medicine. And also like when I
28:08
Speaker 2: was diagnosed, I was applying to medical school, so like
28:11
Speaker 2: I also have a background. When I was first diagnosed,
28:16
Speaker 2: you know, my dad also kind of really thought the
28:18
Speaker 2: situation was hopeless. But like I was always researching everything
28:22
Speaker 2: that was out there and kind of I'd filtered down
28:25
Speaker 2: to things that kind of made sense and then showed
28:27
Speaker 2: it to him. And then what he do is to
28:29
Speaker 2: kind of go through that more and break it down too,
28:32
Speaker 2: like the the things where like, okay, maybe these are actionable.
28:36
Speaker 2: And so I did, like I read every single article
28:38
Speaker 2: that was released for like a year, and but I
28:43
Speaker 2: didn't like if I didn't have my dad where he
28:47
Speaker 2: I didn't have to become an expert of trying to
28:48
Speaker 2: figure out the process. And my dad kind of helped
28:52
Speaker 2: with that. And like now that whole burgain is removed
28:54
Speaker 2: from me because I'm part of like my clinical team's
28:58
Speaker 2: amazing and it's not like I don't have to be
29:01
Speaker 2: like searching of like what is the potential best option
29:04
Speaker 2: out there because like I know, like that that's off
29:07
Speaker 2: my mind now.
29:09
Speaker 1: Yeah yeah, yeah, all right, well man, dude, freakin mean no,
29:16
Speaker 1: come on. If you're so inspiring and I really appreciate
29:19
Speaker 1: you coming on here and taking the time to share
29:23
Speaker 1: your strength with our listeners, how do people learn more
29:29
Speaker 1: about you? How do people reach out to wonderlink and
29:32
Speaker 1: learn more about that?
29:34
Speaker 2: So our wonder Voices project, we have our website. It's
29:38
Speaker 2: wonder Voices dot com. Our foundation I think is wonder
29:44
Speaker 2: We haven't finalized the final site yet, but it's if
29:49
Speaker 2: you look up wonderlink dot org, it should eventually be
29:52
Speaker 2: up there.
29:54
Speaker 1: And then you're talking about w O n d R link.
29:58
Speaker 2: Wonder yeah wo n d R link.
30:02
Speaker 1: Yeah, there's just no okay, and that dot com and
30:06
Speaker 1: dot org or just I have a dot com.
30:09
Speaker 2: Here, Yeah, so dot com is eventually there's going to
30:14
Speaker 2: be a There's only so much things we can do,
30:17
Speaker 2: like for the for nonprofit, so there'll be some like
30:21
Speaker 2: more concierge services for the for profits. That's a little
30:24
Speaker 2: bit separate, okay, yeah, all right here. I also write
30:29
Speaker 2: about my kind of processing the whole experience on my blog,
30:33
Speaker 2: which is this will to endure on media.
30:37
Speaker 1: What's the name of that again, will to.
30:41
Speaker 2: Endure on medium.
30:42
Speaker 1: Okay, we'll have that link up here as trying to
30:48
Speaker 1: this podcast dot com. Well, dude, thank you so much.
30:53
Speaker 1: Appreciate it. Well, be in touch, all
30:55
Speaker 2: Right, cool, all right, thanks, I'm a good one.