Latest / Get Real with Jim Weiss / How to Keep Living with Metastatic Cancer: A Conversation with Tamatha Thomas-Hasse

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How to Keep Living with Metastatic Cancer: A Conversation with Tamatha Thomas-Hasse · Get Real with Jim Weiss

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Speaker 1: I mean, I just don't think I've had a conversation
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Speaker 1: with anyone that brought that up for me the way
0:07
Speaker 1: that did. Yeah, I think I got surprised for myself.
0:11
Speaker 1: You are where you are in this journey of grief
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Speaker 1: and loss and missing it. Look, I have a twenty
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Speaker 1: six wedding anniversary tomorrow. I woke up this morning. I
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Speaker 1: could feel it. I was dreaming about it last night.
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Speaker 1: I don't know if it was an anticipation of this
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Speaker 1: conversation or whatever it was, but Audre's super present for
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Speaker 1: me right now. And then we had this conversation and
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Speaker 1: this woman, obviously Vermont, the Grateful Dead Fish, jam Fans,
0:41
Speaker 1: movement music, It's all so critical to what we talk about,
0:46
Speaker 1: and it's like the through line in every single conversation,
0:49
Speaker 1: how this stuff really can save you and help you
0:52
Speaker 1: ope and get through this kind of loss and grief.
0:56
Speaker 1: And I'm just so lucky to get to talk about
0:59
Speaker 1: it because I think that helps. She mentioned Billy as Trabeli,
1:02
Speaker 1: and they're making a difference. It continues to make me
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Speaker 1: proud of what we do and how important it is
1:08
Speaker 1: to get the word out. So thanks for getting this
1:11
Speaker 1: one together.
1:12
Speaker 2: I'm so glad we did it, and we're going to
1:14
Speaker 2: share a grand Exit. We're going to share this episode
1:17
Speaker 2: and we're going to share the importance of talking about this.
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Speaker 1: Hi, Taym, Welcome to Get Real.
1:24
Speaker 2: Thanks Jim, thanks for having me. It's an honor to
1:27
Speaker 2: be here.
1:28
Speaker 1: Well, you know, I'm honored. Your podcast Grand Exit, I
1:31
Speaker 1: mean Wow, started because you and a friend agreed that
1:35
Speaker 1: you aren't talking about dying and wanted to change that.
1:38
Speaker 1: Why should we talk about this more often? You don't
1:41
Speaker 1: want to talk about it, but you want to talk
1:43
Speaker 1: about it. So just so you know, I think everybody
1:46
Speaker 1: knows this in my viewing audience. I lost my wife
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Speaker 1: about a year and a half ago to small ballot
1:51
Speaker 1: cancer and we never talked about it, and she never
1:54
Speaker 1: wanted to talk about it. So I get where you
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Speaker 1: guys are coming from on this. But again, you know,
2:00
Speaker 1: tell me why. I have my view and I'd love
2:02
Speaker 1: to share it, but I'd love to hear yours first.
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Speaker 2: Yeah, thanks Jim. You know, before we dive in, I
2:07
Speaker 2: do want to acknowledge your loss of Audre and I
2:10
Speaker 2: did spend some time getting to know her a little
2:13
Speaker 2: bit yesterday through some articles, and she just sounds like
2:17
Speaker 2: a remarkable woman, and so I'm thrilled to call her
2:22
Speaker 2: energy and into the room. Yeah, yeah, for sure. I
2:26
Speaker 2: want to answer your first question was why talking about
2:29
Speaker 2: death matters, And I think what you just shared about
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Speaker 2: Audra is exactly why it matters, because it's how we
2:37
Speaker 2: live on. Death is the inevitable doorway to our legacy,
2:40
Speaker 2: to our living on, and that's why Chelsea and I
2:44
Speaker 2: are so intent on bringing these conversations to life for everyone.
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Speaker 2: And everyone's conversation about death is a different conversation entirely,
2:54
Speaker 2: and there are usually multiple conversations, and so we want
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Speaker 2: to encourage those conversations happening, not at the right time,
3:03
Speaker 2: but right now. It's never the right time, and simply
3:08
Speaker 2: so that legacies are alive, just as you just talked
3:14
Speaker 2: about Audre. So yeah, it's funny. I always say that
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Speaker 2: cancer is not a gift, but it has shown me gifts,
3:21
Speaker 2: and so that's sort of how I view it. I
3:24
Speaker 2: definitely feel deeply the barbed wire part of that statement.
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Speaker 2: I would say life was life before cancer. It was
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Speaker 2: messy and hard and beautiful and wonderful, just like it
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Speaker 2: is now, with just some added elements that were unexpected
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Speaker 2: there is certainly, Jim, as you well know, just this
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Speaker 2: heavness to life now even in the brightest moments, there
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Speaker 2: is sort of a knowing of what is inevitable that
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Speaker 2: is very present all the time. And that's I think
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Speaker 2: the biggest difference between life before cancer for me in
4:01
Speaker 2: life after is that you know, I am walking arm
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Speaker 2: in arm very close to my mortality at every second,
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Speaker 2: and that is enlivening and also heavy.
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Speaker 1: Is talking about it? Does that make it less heavy?
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Speaker 1: Do you think?
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Speaker 2: I don't know how everyone feels about it. For me,
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Speaker 2: it does. For me, it just is, you know, for
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Speaker 2: me part of my legacy. I really want it to
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Speaker 2: be that that it is representative of my whole self,
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Speaker 2: and so it can't just be about the pretty things
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Speaker 2: of life. It has to also be about the things
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Speaker 2: that do weigh me down. And so I also hope
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Speaker 2: that my talking about death, you know, right now and
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Speaker 2: my family, the big conversation is medical aid and dying
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Speaker 2: and how we all feel about that, and not that
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Speaker 2: their opinion of it is necessarily going to change my
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Speaker 2: opinion of it, but it's so that we're all on
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Speaker 2: the same page when I do leave or as could
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Speaker 2: happen at any moment. My husband been may die before
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Speaker 2: me even I mean, we just never know, but we're
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Speaker 2: all clear. There is clarity. So it may not feel
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Speaker 2: good all the time, but there's clarity, and for me,
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Speaker 2: there is great comfort in that clarity.
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Speaker 1: Well that's interesting because you know, I go to Temple.
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Speaker 1: I'man Jewish by religion. Maybe my view is Jews do
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Speaker 1: death really well, right, it's in the whole story. I
5:23
Speaker 1: don't know if you what your religious beliefs are, or
5:26
Speaker 1: if you've gotten more religion since this happened, But what
5:30
Speaker 1: I would see our rabbis talking about are exactly getting ready,
5:34
Speaker 1: cleaning up your house, making sure it's an order so
5:37
Speaker 1: that the family isn't left with a mess to clean
5:41
Speaker 1: up on top of morning a loss. There's so much
5:44
Speaker 1: to it. And I have a friend and colleague who
5:49
Speaker 1: lost her husband suddenly. Like you said, that can happen
5:51
Speaker 1: at any time and unexpectedly, leaving you know, young kids
5:56
Speaker 1: and the worst part of it, and none of that
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Speaker 1: house was an order. She had to get it in order.
6:00
Speaker 1: So now she's creating a book and a business that's
6:04
Speaker 1: totally focused on helping people get ready for that financial
6:08
Speaker 1: planners and others help you do that. We had our
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Speaker 1: house pretty well in order. But it was a sermon
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Speaker 1: that someone one of the rabbis gave around maybe it
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Speaker 1: was young Kipper or whatever, where they talk about that
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Speaker 1: and it's a gift to leave in a legacy, to
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Speaker 1: leave your family, to have that all pretty well buttoned
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Speaker 1: up and cleaned up, and it's a that's fit to
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Speaker 1: do it well.
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Speaker 2: And what's interesting is that I've found, you know, I've
6:32
Speaker 2: had the benefit of being metastatic for quite some time.
6:36
Speaker 2: And so I started out and I was first diagnosed metastatic,
6:40
Speaker 2: like writing out my memorial service like almost word for word,
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Speaker 2: like this is who should say this, This is the
6:46
Speaker 2: poem I want this, these are the songs, like this
6:48
Speaker 2: is what I want my pastor to focus on in
6:50
Speaker 2: the sermon. And then it got a little less scripted,
6:53
Speaker 2: and now I'm at the stage where I don't want
6:58
Speaker 2: a script. My thinking is that I have loved intentionally
7:03
Speaker 2: and authentically so hard for the last few years that
7:08
Speaker 2: my hope is that people will know how to honor
7:10
Speaker 2: me in the way that honors their grieving of me.
7:14
Speaker 2: They don't need me to tell them that. So I've
7:17
Speaker 2: sort of come full circle in that, and I'm just
7:20
Speaker 2: sort of letting it.
7:21
Speaker 1: Go, which is good advice. Sometimes it's good to let
7:24
Speaker 1: go the outcome, right, But where are you on this
7:27
Speaker 1: journey with the disease at this point?
7:30
Speaker 2: Well, I'm a mess on the journey. I'm in the
7:33
Speaker 2: I think, the messy middle of it in many ways.
7:36
Speaker 2: But I'm very solidly metastatic stage four, which means treatment
7:41
Speaker 2: no longer has curative intent. It is to prolong my life.
7:45
Speaker 2: And I guess this is where, oddly enough, I have
7:49
Speaker 2: to say, two days ago was the anniversary of when
7:51
Speaker 2: I started troe Delvy, which is the treatment I'm on now.
7:54
Speaker 2: So I've been on that for five years, which is unbelievable,
7:59
Speaker 2: and yeah, it's I mean, I guess this is where
8:01
Speaker 2: I do my shout out to Gilliad Sciences, right, and
8:05
Speaker 2: all of the researchers and scientists and the women who
8:07
Speaker 2: participated in clinical trials. I mean, gratitude doesn't even seem
8:11
Speaker 2: like a big enough word for my feeling about the
8:14
Speaker 2: scientists these days. I have treatment troe Delvi is two
8:19
Speaker 2: weeks on, one week off, So I've been having chemotherapy
8:24
Speaker 2: for five years, so to be honest. I just said
8:27
Speaker 2: to my infusion nurse yesterday when I had infusion, I
8:30
Speaker 2: don't think a body was meant to be on chemo
8:32
Speaker 2: for this long. I mean, I am I'm tired. My
8:35
Speaker 2: body is tired. I think my mind is tired.
8:38
Speaker 1: Okay, So I'm going to just say it like I
8:41
Speaker 1: am blown away by what you're saying, only because you
8:45
Speaker 1: come across as like one of the healthiest people I've
8:48
Speaker 1: ever sitting in on show, with energy and drive, like
8:52
Speaker 1: how are you doing it?
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Speaker 2: It's funny that you say energy because you have to
8:56
Speaker 2: remember that yesterday I got quite a bit of dex
8:59
Speaker 2: and methisome, which is a steroid. Now it is still
9:02
Speaker 2: coursing through my body. So if we were to do
9:05
Speaker 2: that this interview gym two days from now, I would
9:09
Speaker 2: be like ten minutes before pulling myself out of bed.
9:13
Speaker 2: So I tend to yesterday after treatment, today and early
9:17
Speaker 2: tomorrow I will get my work done. I will get
9:20
Speaker 2: ironing done. That's how it is. But people often will
9:23
Speaker 2: say to me like, you look great, you look amazing,
9:27
Speaker 2: And drugs I take for side effects go a long way,
9:31
Speaker 2: And I think it is the hard thing about being
9:33
Speaker 2: metastatic because people forget that you are. I am sick,
9:38
Speaker 2: I have poison coursing through my veins, and at any
9:42
Speaker 2: given moment, I'm on a multitude of drugs. In fact,
9:45
Speaker 2: I have a thing on my arm right now that
9:47
Speaker 2: at any minute is going to go off to give
9:49
Speaker 2: me a shot to help keep my white blood cell
9:51
Speaker 2: count high enough to receive treatment. So yeah, anyway, that's
9:55
Speaker 2: the game of being metastatic, is, you know, having one
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Speaker 2: foot firmly planted in dying and one foot firmly planted
10:05
Speaker 2: and trying to still live fully.
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Speaker 1: So you've been on all the treatments. It sounds like
10:09
Speaker 1: you're ontro delby now, which that's continuing to potentially help, right,
10:15
Speaker 1: So that's great. We're not making claims on the show
10:18
Speaker 1: don't work for the product, but I want to make
10:20
Speaker 1: sure that's clear. We're just talking broadly. But you're on
10:24
Speaker 1: gems are in key Truda, which is a drug I
10:27
Speaker 1: work on and have worked on, which really don't tend
10:30
Speaker 1: to work all that well in some of these settings
10:34
Speaker 1: and may not be working for you. So when you
10:38
Speaker 1: deal with that, and a lot of people deal with
10:41
Speaker 1: different treatments, let's hear what it's constantly like shifting treatments
10:47
Speaker 1: and what a doctor's miss about the burden of cancer
10:50
Speaker 1: treatment for patients.
10:51
Speaker 2: That's a great question, I think, if it's okay with you, Jim,
10:54
Speaker 2: I'd love to answer that question from the perspective of
10:58
Speaker 2: someone with metastatic disease, because I feel.
11:01
Speaker 1: Like, and let's describe for the autumnce, metastatic means it
11:06
Speaker 1: spread to another part of the body.
11:09
Speaker 2: Correct, yep, So mine spread through outside of my chestwall,
11:14
Speaker 2: lymph nodes, my lungs, and then my brain. So I
11:18
Speaker 2: have had two rounds of brain radiation on seven spots.
11:22
Speaker 2: We continue to watch those spots because, as you can imagine,
11:26
Speaker 2: radiation does do damage to the brain tissues, so we
11:29
Speaker 2: watch for symptoms of that. I think when it comes
11:32
Speaker 2: to metastatic what physicians miss when it comes to metastatic disease,
11:38
Speaker 2: I think there are three things. One is that they
11:40
Speaker 2: don't get us to palliative care soon enough. I think
11:44
Speaker 2: as soon as you can get to palliative care and
11:47
Speaker 2: a docs. Unfortunately, medical oncologists, so many of them like
11:52
Speaker 2: conflate palliative care with end of life care or hospice care,
11:56
Speaker 2: and they're so different. The palliative ducks are there to
12:00
Speaker 2: take care of like not only symptom management, but your psychological, emotional,
12:05
Speaker 2: and spiritual wellbeing.
12:07
Speaker 1: Right. It's living with cancer, right, So let's describe palliative
12:11
Speaker 1: for people they because I do think most people, including
12:14
Speaker 1: myself to some degree, would think that that's just making
12:18
Speaker 1: you comfortable toward the end of life. But that's not
12:21
Speaker 1: true anymore.
12:23
Speaker 2: No, it's not true, and so there are just so
12:26
Speaker 2: many myths, and I think it keeps people from getting
12:29
Speaker 2: the kind of support that they need around how to
12:33
Speaker 2: live long term. I mean, we're going to need this.
12:36
Speaker 2: These drugs are amazing at keeping people alive for longer,
12:39
Speaker 2: and so we have to find ways to really take
12:42
Speaker 2: care of not only the physical body and the medical
12:45
Speaker 2: outcomes that folks are wanting, but what are the spiritual
12:49
Speaker 2: outcomes you're hoping for? What are the emotional outcomes? What
12:52
Speaker 2: are the things that are keeping you back from quality
12:54
Speaker 2: of life. The other thing I think that folks miss
12:58
Speaker 2: that medical oncologists miss with folks who are metastatic is
13:03
Speaker 2: around the time of scans. I remember conversations when I
13:07
Speaker 2: was first diagnosed, before I was metastatic, So the first
13:10
Speaker 2: round with cancer, I can remember my docs coming into
13:13
Speaker 2: the room before scans and saying like a week before, Hey,
13:18
Speaker 2: you're gonna have scans next week. And I'm sure you're
13:21
Speaker 2: nervous and anxious about that, but I want you to
13:23
Speaker 2: know if they don't look the way we hope they look,
13:25
Speaker 2: I've got our first next step, like, I know what
13:28
Speaker 2: we're gonna do. I have yet jim to have a
13:31
Speaker 2: doctor now since being metastatic, who has like a week
13:36
Speaker 2: or so before my scans checked in with me about them.
13:41
Speaker 2: And I've had like over five years of scans, like
13:44
Speaker 2: every three months I get them, and no one has
13:47
Speaker 2: ever said, Wow, you must really think the shoe is
13:50
Speaker 2: gonna drop on this one. Because each time they're good,
13:54
Speaker 2: it's also like was this the last? How many more
13:57
Speaker 2: times are they gonna be good before the shoe is
14:00
Speaker 2: going to drop? What it would mean for my doc
14:03
Speaker 2: to come into the room and be like, look, you're
14:05
Speaker 2: not having any side effects. I know how you know
14:08
Speaker 2: how to deal with your pain? How is your brain
14:11
Speaker 2: around these scans? Like how is your heart? What are
14:13
Speaker 2: you most worried about? The piece that docs, my docs anyway,
14:18
Speaker 2: are missing right now. And my sense is probably many
14:21
Speaker 2: oncologists are missing right now is just the courage to
14:26
Speaker 2: ask how I'm really doing. And I know that that
14:30
Speaker 2: is a burden. I know that they have ten minutes
14:32
Speaker 2: with me, I know, but I would much rather spend
14:35
Speaker 2: ten minutes with them me telling them that today I
14:38
Speaker 2: showed up for treatment and before I could be seen,
14:41
Speaker 2: I was charged forty three hundred dollars. And that made
14:43
Speaker 2: this feel like it was not a place of care
14:45
Speaker 2: but a place of service. And it makes me feel small,
14:49
Speaker 2: and it makes me feel shameful, and I wish somebody
14:52
Speaker 2: could do something about that. That's the kind of thing
14:55
Speaker 2: I wish it. Doctor would not miss.
14:57
Speaker 1: Going back to tw twenty eighteen, how did you find it? Like?
15:00
Speaker 1: What how did this all happen? I mean we hear
15:04
Speaker 1: about the regular mamm or Graham and all the rest.
15:06
Speaker 1: Was it part of that? Or how did you discover this?
15:10
Speaker 2: Yeah, inflammatory breast cancer doesn't have a lump. And I
15:13
Speaker 2: think this is important because I'm in public health, Like
15:16
Speaker 2: I know prevention, I know the importance of like taking
15:19
Speaker 2: care of your body. All of that to say, I
15:22
Speaker 2: was menopausal and so gaining weight in funny ways, and
15:26
Speaker 2: I had this left breast that started getting bigger than
15:29
Speaker 2: my right breast, and I really did at first blame
15:33
Speaker 2: it on menopause, and I was like, well, of course,
15:35
Speaker 2: you know again another curse like this is fine, this
15:37
Speaker 2: is just what's happening. My breast then started to get
15:41
Speaker 2: really red, and I've thought, okay, well maybe this is
15:45
Speaker 2: menopausal mas titis, which is a thing, and so I
15:49
Speaker 2: ignored it, ignored it, I mean who anyway, and then
15:53
Speaker 2: my skin on my left breast under my nipples started
15:57
Speaker 2: getting it looked like an orange peel, were like big
16:01
Speaker 2: pores and hard, and I was supposed to leave for
16:07
Speaker 2: Florida the next day. My best friend and her daughter
16:11
Speaker 2: and my daughter we were going to see ed Sheeran
16:13
Speaker 2: in concert. And I thought, well, I better go to
16:16
Speaker 2: urgent care because if this is an infection, I'd rather
16:18
Speaker 2: go to urgent care here at home rather than in Florida.
16:22
Speaker 2: And I went to urgent care and the nurse practitioner
16:27
Speaker 2: took one look at it and said, you know, I'm
16:29
Speaker 2: going to go get the doctor. And I knew then
16:32
Speaker 2: something was wrong. And then the doctor came in and
16:35
Speaker 2: she said, this looks like inflammatory breast cancer. You have
16:40
Speaker 2: to have a biopsy and imaging and how she left
16:44
Speaker 2: the room. I remember her tapping my leg like and
16:49
Speaker 2: it was just this like maternal where I thought, oh,
16:54
Speaker 2: this is bad, like this is bad, like this is
16:56
Speaker 2: and I'd never heard of inflammatory breast cancer. And so
17:01
Speaker 2: I went home. I told my husband. I remember telling
17:05
Speaker 2: him and he started to cry and I told him,
17:08
Speaker 2: you can't, you can't cry like you can't. I need
17:11
Speaker 2: you to hold it together like you can't cry. To
17:15
Speaker 2: this day, that is the biggest mistake I ever made
17:18
Speaker 2: was telling him that. And then the next day we
17:21
Speaker 2: left for Florida, the flour of Us and I had
17:23
Speaker 2: the best trip, one of the best trips I've ever had,
17:27
Speaker 2: And yeah, it was just what we needed. Found a
17:30
Speaker 2: doctor at Dana Farber Cancer Institute, doctor beth Overmoyer, who
17:32
Speaker 2: had been researching and treating inflammatory breast cancer for over
17:37
Speaker 2: twenty years, and he said, this is where we'll go
17:39
Speaker 2: and we'll figure it out. And I started treating in
17:42
Speaker 2: December at Dana Farber.
17:44
Speaker 1: And have you gotten to see certain milestones that you
17:47
Speaker 1: were hoping to get with your daughter?
17:49
Speaker 2: So I will say that the data that I read
17:54
Speaker 2: at the time of diagnosis was that maybe four years
17:58
Speaker 2: and at that point of diagnosis. My daughter was in
18:01
Speaker 2: eighth grade, and my dream, if anyone had asked me,
18:06
Speaker 2: what is your milestone? What are you living for? It
18:11
Speaker 2: was to see her graduate from high school. And I
18:14
Speaker 2: could see it. I could see the white tent on
18:18
Speaker 2: the lawn, the high school lawn. I could feel the
18:20
Speaker 2: grass under my feet. I could feel the or hear
18:23
Speaker 2: the high school band doing some grateful dead cover as
18:28
Speaker 2: we are often known to do in Vermont. All of it,
18:31
Speaker 2: it was so clear to me, and honestly, Jim, we
18:35
Speaker 2: got that milestone, and everything after that is just cake
18:39
Speaker 2: for me. It really has just been cake. I feel
18:42
Speaker 2: like it's all been milestone since then.
18:45
Speaker 1: Yeah, well that's cool. So you're labeled a survivor. Do
18:48
Speaker 1: you see yourself that way?
18:50
Speaker 2: I feel like survivors are like the group of people
18:53
Speaker 2: who like went through treatment and are no evidence of
18:56
Speaker 2: disease and like have quote unquote beat this thing. I
19:00
Speaker 2: really haven't ever appreciated the language of cancer, Like I
19:03
Speaker 2: don't like the warrior battle militarized language around cancer doesn't
19:10
Speaker 2: resonate with me, and the cheerleader hopeful message also doesn't resonate.
19:17
Speaker 2: So I have, really I've tried to stay away from
19:20
Speaker 2: that language and labels. I think I just want to
19:23
Speaker 2: be called a person living with cancer.
19:25
Speaker 1: Like a person living with cancer makes sense. I think
19:28
Speaker 1: people don't think it's possible, but it is, so that
19:30
Speaker 1: may be the more hopeful point.
19:33
Speaker 2: It is possible, And for me, the only way that
19:37
Speaker 2: it is possible, Jim, is that I have to be
19:40
Speaker 2: honest about how beautiful it is and also how messy
19:44
Speaker 2: it is.
19:45
Speaker 1: Well, you say cancer treatment means fitting life into what
19:48
Speaker 1: you call three month increments. What's it like to live
19:52
Speaker 1: inside that time frame for all these years you keep
19:55
Speaker 1: beating the odds. Tell me about the three month increment
19:59
Speaker 1: concept and sort of how you've navigated it. Yeah.
20:02
Speaker 2: I think some increments I navigate much more smoothly than others.
20:07
Speaker 2: But it is a roller coaster, and I think for me,
20:10
Speaker 2: it's important to acknowledge that people are on that roller
20:14
Speaker 2: coaster ride with me. I'm not on that roller coaster
20:16
Speaker 2: by myself. I wish I were, I really wish I were.
20:21
Speaker 2: But it affects everybody who loves me. And I notice
20:26
Speaker 2: sort of the charged energy that happens around the time
20:29
Speaker 2: of scans. There's an anxiety. My daughter will constantly be
20:34
Speaker 2: like checking in, and like just she's afraid that now
20:37
Speaker 2: that she's no longer living in the house, she's afraid
20:40
Speaker 2: that things will go bad and we won't tell her,
20:43
Speaker 2: and there's just this energy around it. I guess the
20:46
Speaker 2: way that I manage it is that I do take
20:49
Speaker 2: what I call chemo holidays. I take breaks often from treatment.
20:54
Speaker 2: And it's something that John and Harper both agree with
20:58
Speaker 2: the approach. And some people in my life don't understand
21:02
Speaker 2: it as much as others. They want me on it
21:04
Speaker 2: all the time and doing what you can, and for me,
21:07
Speaker 2: it's just important to take time off and begin to
21:11
Speaker 2: feel like me again. It's also important for me to
21:14
Speaker 2: take time off because it relieves John, who is my
21:17
Speaker 2: primary caregiver, of like having also deal with all of this.
21:21
Speaker 2: And so it doesn't mean that I'm going like skydiving
21:25
Speaker 2: or like a grand trip to the Bahamas. You know,
21:28
Speaker 2: it's just sometimes it's just taking a break just to
21:31
Speaker 2: go see a concert or a weekend trip somewhere, just
21:35
Speaker 2: to in some ways pretend like we're normal.
21:38
Speaker 1: Well, I'm sure that shows up the energy to go on, right,
21:42
Speaker 1: because this is hard stuff. So, speaking of what you
21:45
Speaker 1: said caretaking, I certainly had to do it. My wife
21:49
Speaker 1: didn't see me cry because I did it. I left
21:53
Speaker 1: her in the hospital after a horrible beginning to the
21:56
Speaker 1: whole journey and came home and howled at the moon
21:59
Speaker 1: for an hour, pretty much not fully believing it right
22:04
Speaker 1: and getting it. But you know, we just don't want
22:06
Speaker 1: to believe these things could be plased right. You don't
22:10
Speaker 1: want to believe the worst. You work in the space
22:13
Speaker 1: and you still, as you said, I don't know how
22:15
Speaker 1: long you ignored it or hoped it would go away
22:18
Speaker 1: or change, but in cancer, every day or week or
22:22
Speaker 1: month can make a difference. So I think it's important
22:26
Speaker 1: to get that message out. But for the caretaker, what
22:28
Speaker 1: have you learned from your husband and caretakers and your
22:32
Speaker 1: daughter and anything that they've shown you?
22:36
Speaker 2: Yeah, I would. I think the most important lesson that
22:40
Speaker 2: they've taught me is the deep value of unconditional empathy,
22:47
Speaker 2: and what that means for me sometimes is I have
22:51
Speaker 2: to remember that they are also worthy of that from me,
22:55
Speaker 2: and that is hard when you feel icky and bad
22:59
Speaker 2: and sick. Sometimes it's hard to flex that empathy muscle.
23:03
Speaker 2: But they are deserving of it just like I am.
23:06
Speaker 1: Yeah, and it's hard to have that when you're going
23:08
Speaker 1: through it, it's so hard you're just trying to get
23:11
Speaker 1: through the next minute in some cases, which I came
23:14
Speaker 1: to understand. But I think the goal and the goal
23:19
Speaker 1: of all of us is to just create the best
23:21
Speaker 1: quality of life we can for the person going through it.
23:24
Speaker 1: And it sounds like you guys have found a way
23:27
Speaker 1: to work together to do that. Who do you turn
23:29
Speaker 1: to on hard days and how do you ask for how?
23:32
Speaker 1: How have you evolved through that? I saw that journey
23:34
Speaker 1: with Odra and myself. My friends showed up big in
23:38
Speaker 1: ways I was surprised at. But obviously it changes. So
23:42
Speaker 1: what's your experience? Right?
23:44
Speaker 2: It sort of mimics grief in many ways, where like
23:47
Speaker 2: you know, when the person dies, everyone's there for a while,
23:49
Speaker 2: but then eventually you close the door and it's you.
23:53
Speaker 2: I think this is a really important question because people, again,
23:57
Speaker 2: who are metastatic, you're still in treatment, and yet you
24:02
Speaker 2: and the people closest to you, especially those in the household.
24:06
Speaker 2: So for me, it's Johnny. You have to figure out,
24:08
Speaker 2: like what this new normal is going to be. You
24:11
Speaker 2: can't just stop cooking and stop doing the laundry and
24:14
Speaker 2: stop you know, I too, Jim. I like, you know,
24:17
Speaker 2: I live in a small town in Waterbury, Vermont, and
24:20
Speaker 2: that at the time of diagnosis, I was chair of
24:23
Speaker 2: the select board for the town of Duxbury. So it's
24:26
Speaker 2: a little town next to Waterbury, and you know, it
24:28
Speaker 2: raised my child in this town, and the way that
24:32
Speaker 2: the community came together for us was just remark. I mean,
24:35
Speaker 2: it's everything. It's it's why small towns are so special.
24:39
Speaker 2: We just don't do that with metastatic disease because you
24:43
Speaker 2: have to, like, yeah, you just have to start to
24:46
Speaker 2: figure out what this normal is going to be. So
24:50
Speaker 2: you know, on hard days, who is it? It's John. It's
24:53
Speaker 2: always John. Someone said that, like, as you get sicker
24:58
Speaker 2: and sicker, you go from like a cruise ship of
25:01
Speaker 2: support to a dinghy. And so he's by dinghy. So
25:05
Speaker 2: what that looks like for us is that he'll come
25:07
Speaker 2: home on a Friday evening after a really grueling week
25:11
Speaker 2: at work and we had plans to go out, and
25:15
Speaker 2: I don't feel good. I don't want to go out,
25:17
Speaker 2: and so it means that instead we sort of set
25:21
Speaker 2: up a bar in the backyard and make a nice
25:24
Speaker 2: cocktail and sit outside and let the stars come out
25:27
Speaker 2: and try to figure it out from there. But it's
25:29
Speaker 2: always john On the hardest of days, I will say,
25:32
Speaker 2: I have four amazing friends in that dinghy with me,
25:36
Speaker 2: and I have my mom and dad, who.
25:40
Speaker 1: I was going to ask you about them. Yeah, they're around.
25:43
Speaker 1: How are they doing?
25:44
Speaker 2: They're amazing, They're eighty years old. And in a couple
25:47
Speaker 2: of weeks I'll take some time off of treatment to
25:50
Speaker 2: spend my dad is giving a lecture and share it
25:53
Speaker 2: in Wyoming, and I'm going to go see him, and
25:56
Speaker 2: there's going to be like just reveling in this like
26:01
Speaker 2: brilliant eighty year old man who still is like he's
26:04
Speaker 2: a colorectal he's a rectal cancer survivor, and I think
26:09
Speaker 2: the world of him, and I think the world of
26:10
Speaker 2: my mom. She and I just got back from a
26:12
Speaker 2: trip to New York City to see my daughter together.
26:15
Speaker 2: I have to be very careful about what I share
26:17
Speaker 2: with them because I'm their daughter, Like this is this
26:21
Speaker 2: is too it's too much, it's too much for them.
26:24
Speaker 2: So I go to them with some things, but it's honestly,
26:27
Speaker 2: it's Johnny's He's the main one.
26:31
Speaker 1: Well, so what is he and your daughter? What have
26:33
Speaker 1: they learned from you.
26:34
Speaker 2: I hope that I've taught them that it's okay to
26:37
Speaker 2: show up to life as your whole, true self. That
26:41
Speaker 2: I think we're in this culture where, especially for my
26:45
Speaker 2: daughter and social media, where showing up MESSI is not okay,
26:49
Speaker 2: showing up vulnerable is not okay. Showing up without the
26:52
Speaker 2: perfect outfit or the perfect whatever, make whatever is just
26:55
Speaker 2: not okay, and that showing up you have to show
26:58
Speaker 2: up to all of it. That would be a good
27:00
Speaker 2: question to ask them.
27:02
Speaker 1: Well, you did say, you know, taking the breaks if
27:04
Speaker 1: you can do them and they can afford to take them.
27:06
Speaker 1: I think that's a big one that I hadn't really
27:09
Speaker 1: thought about it. And how you view palliative care. That
27:12
Speaker 1: felt good to have that discussion or find a palliative
27:15
Speaker 1: care doctor. And you mentioned music and movement. I work
27:18
Speaker 1: with Renee Fleming on a program called Music in the Mind.
27:21
Speaker 1: She's an opera singer. So one of the things I
27:24
Speaker 1: wanted to hit on, because you keep mentioning Vermont, is
27:26
Speaker 1: that I got through my wife's you know, cancer myself
27:31
Speaker 1: by going out and listening to the dead cover bands,
27:33
Speaker 1: which are everywhere in the Mill Valley area. So I
27:36
Speaker 1: assume where you live it's fish, right, We're going to
27:40
Speaker 1: bring it up. I just saw Fish for the first
27:42
Speaker 1: time at the Sphere for my birthday May first, and
27:45
Speaker 1: then I also understand Mountjoy spends time there too, and
27:49
Speaker 1: I don't know if you've gotten to know that much.
27:51
Speaker 1: So I just wondered, music wise, how do you do it?
27:54
Speaker 1: And where do you go?
27:56
Speaker 2: And so funny that you asked this, because that is
27:59
Speaker 2: like live music is. That's where I find the greatest
28:02
Speaker 2: connection in so many ways. And so I think in
28:05
Speaker 2: the last few weeks my husband and I booked like
28:09
Speaker 2: four concerts to go to and the one I'm looking
28:14
Speaker 2: forward to the very most is to see Noah Kahn
28:17
Speaker 2: in concerts. So we saw him a number of years
28:19
Speaker 2: ago on Lake Winnipeesake in New Hampshire. But to me,
28:23
Speaker 2: he writes his music is a love letter to Vermont,
28:27
Speaker 2: It's a love letter to New England and sort of
28:30
Speaker 2: the ethos of that place. And I just love him.
28:34
Speaker 2: And I'll see Kenny Chesney at this spear with my
28:37
Speaker 2: two best friends from seventh grade in a couple of weeks.
28:40
Speaker 1: I hear you. You know I'm a big believer, and
28:43
Speaker 1: why I support this music as Madisine program, which we're
28:47
Speaker 1: going to podcast about soon, I think, and you'll relate
28:51
Speaker 1: to it. But I do want to get real on
28:53
Speaker 1: the show. So, with your cancer journey and where you
28:56
Speaker 1: are now, you're reassessing what the word hope means to you.
29:00
Speaker 1: It usually implies expectations. I'm wondering, do you think there's
29:04
Speaker 1: a way to have hope without expectations.
29:07
Speaker 2: I love the way you worded this question because I
29:13
Speaker 2: think what happens when you are able to have hope
29:15
Speaker 2: without an expectation tied to the end of it, or
29:20
Speaker 2: the responsibility of receiving some outcome at the end, is
29:25
Speaker 2: that it reclaims hope from being this like transactional relationship.
29:32
Speaker 2: It turns it on its head. And when you do that,
29:36
Speaker 2: then there ceases to be this need for burden of anticipation.
29:41
Speaker 2: It stops being a strategy to avoid pain. I think
29:45
Speaker 2: that's why some people have hope is it's like a
29:48
Speaker 2: coping tool that they pull from their belt when things
29:51
Speaker 2: get really hard and it becomes this like decision, this
29:56
Speaker 2: active decision to lean into presence, to lean in into
30:00
Speaker 2: what is right and good right now, And that is
30:03
Speaker 2: where I have to stay like I guess if anybody
30:06
Speaker 2: is looking for a tip about cancer is you've got
30:09
Speaker 2: to lean into the present moment, don't get too far
30:12
Speaker 2: out ahead of yourself, and in that it becomes this
30:15
Speaker 2: like epic like honoring of a liveness.
30:19
Speaker 1: I always say, hope is not a strategy, you know,
30:21
Speaker 1: and it's not. You talked about your strategies about getting
30:25
Speaker 1: things tidy, and you know, working in partnership with your
30:28
Speaker 1: husband and even just having that drink at the end
30:31
Speaker 1: of the day. It's just so cool to hear all
30:33
Speaker 1: those things that you do.
30:35
Speaker 2: The nice thing is, I mean, it's a nice and
30:38
Speaker 2: beautiful thing is you and I will celebrate thirty years
30:40
Speaker 2: of marriage at the end of November. I think that's
30:43
Speaker 2: also a strength. You know, we weren't. We've had a
30:47
Speaker 2: lot of practice over that. We met waiting tables at
30:50
Speaker 2: the Olive Garden. For God's sakes, We've had a lot
30:52
Speaker 2: of We've had a lot of practice and adversity. So yeah,
30:56
Speaker 2: we had a lot of tools to pull from.
30:57
Speaker 1: Well, I think I know the answer to my first
31:00
Speaker 1: question that I like to end with, which is what's
31:03
Speaker 1: your favorite place you've ever lived? I think I'm going
31:06
Speaker 1: to know that but what is it?
31:08
Speaker 2: Yeah, it's so we had a farmhouse that was built
31:13
Speaker 2: in eighteen fifty and this farmhouse is my dream. It's
31:19
Speaker 2: I hated selling. It was really sad. But that's the
31:22
Speaker 2: favorite place I've ever lived.
31:24
Speaker 1: Do you know who lives there not? Do you get
31:25
Speaker 1: to go visit or I do go visit.
31:28
Speaker 2: The last time I went back, I had just got
31:30
Speaker 2: out of the hospital after treatment the first time, I
31:33
Speaker 2: wanted to finish my living at the beach, so we
31:35
Speaker 2: moved to a little town called Hermosa Beach outside of
31:38
Speaker 2: Los Angeles and we lived there for three years, and
31:41
Speaker 2: then my daughter went back to Vermont the winter of
31:44
Speaker 2: her junior year to ski. Came home from that vacation
31:48
Speaker 2: back to California and said, Hey, I really want to
31:50
Speaker 2: do my senior year back home in Vermont. So we
31:52
Speaker 2: picked up again and went back. Like if I like
31:55
Speaker 2: on my worst days, I imagine myself in a cabin
31:58
Speaker 2: in the mountains.
32:00
Speaker 1: Yeah sounds cool. If there's an album that's the soundtrack
32:04
Speaker 1: of your life, what would that be? Because we've talked
32:06
Speaker 1: about music.
32:07
Speaker 2: This album came out my junior year in college, and
32:11
Speaker 2: I still listen to it at least three or four
32:14
Speaker 2: times a week, Nancy Griffith, many, many rooms, many voices.
32:19
Speaker 1: Yeah, I remember that. Yeah, wow, interesting. Thanks for spending
32:23
Speaker 1: this time. I think it might have been more emotional
32:25
Speaker 1: for me than you. It's wild. I feel like I'm
32:29
Speaker 1: looking at something I you know, wish you know, it's wishful,
32:35
Speaker 1: you know, for me. And I'm so encouraged by you
32:40
Speaker 1: and I inspired, and I'm just so glad we took
32:45
Speaker 1: this time to have this conversation. It was healing personally
32:49
Speaker 1: for me. I don't know how it feels for you,
32:51
Speaker 1: but I'm so glad I got to do it. That's
32:54
Speaker 1: going to be really one of the most powerful podcasts
32:57
Speaker 1: we've done. So thanks for doing it.
33:00
Speaker 2: Are so welcome. It was my pleasure and I feel
33:02
Speaker 2: the same way. And I did know Jim coming in
33:05
Speaker 2: that sort of the face you were staring at as
33:09
Speaker 2: I speak, And how could there not be a wishfulness
33:12
Speaker 2: or a hopefulness about that? I guess to let you know,
33:16
Speaker 2: I know that Audre was a huge advocate for people
33:21
Speaker 2: with cancer and early detection and acknowledging the cruelty of
33:24
Speaker 2: this disease, and so I guess that is sort of
33:28
Speaker 2: what I carry forward is everybody. I mean, I have
33:31
Speaker 2: so many people in my life who were diagnosed way
33:35
Speaker 2: after I was and are already gone. And so that
33:37
Speaker 2: is that's part of my job is to carry on
33:41
Speaker 2: what they couldn't and so know that I now she's
33:45
Speaker 2: part now of the tribe that I'm helping to carry forward.
33:49
Speaker 2: So yeah, and I'm here anytime.
33:52
Speaker 1: Grand exit, I'd say it's more of rand entry. Thanks, no,
33:57
Speaker 1: thank you.
33:58
Speaker 2: Thank you, Thanks for getting real and for all the
34:00
Speaker 2: work you're doing to help, Yeah, bringing science to the masses.
34:05
Speaker 2: I mean that we're at a time right now where
34:07
Speaker 2: we need people to understand the value of science.
34:10
Speaker 1: Hey, everyone, thanks for watching. I really appreciate that you
34:13
Speaker 1: take the time to listen to this and tune in,
34:16
Speaker 1: So please subscribe, follow I've got a lot of amazing
34:20
Speaker 1: guess you're going to learn a lot and you're gonna
34:22
Speaker 1: feel a lot better because you did it.