Conversations on Cancer is a 6-part mini-series on the Relationship Matters podcast focusing on finding Right Relationship with life-threatening illness. Across the 6 episodes, Faith Fuller and Katie Churchman talk with survivors & caregivers from around the world about their relationship with life-threatening illness. In this episode, Faith and Katie talk with Sally Waters about what it means to be in right relationship with death when a diagnosis is terminal.
Sally Waters is a retired mediator and ORSC coach. She has a wife and 3 kids aged 17, 21 and 26. She was diagnosed with Stage III breast cancer in Jan 2013, and then with Stage IV breast cancer in June 2014 which has spread to her spine.
Conversations on Cancer is a 6-part mini-series on the Relationship Matters podcast focusing on finding Right Relationship with life-threatening illness. Across the 6 episodes, Faith Fuller and Katie Churchman talk with survivors & caregivers from around the world about their relationship with life-threatening illness. In this episode, Faith and Katie talk with Sally Waters about what it means to be in right relationship with death when a diagnosis is terminal.
Sally Waters is a retired mediator and ORSC coach. She has a wife and 3 kids aged 17, 21 and 26. She was diagnosed with Stage III breast cancer in Jan 2013, and then with Stage IV breast cancer in June 2014 which has spread to her spine.
Key
KC – Katie Churchman
FF – Faith Fuller
SC - Sally Waters
[Musical intro 00:00 – 02:26]
FF – Welcome to Conversations on Cancer. My name is Faith Fuller and I’m one of the founders of CRR Global, along with Marita Frijon. The following is a season of podcasts with different cancer survivors about creating right relationship with a life threatening illness. We want to acknowledge right off the bat that this topic can naturally bring up a wide variety of feelings for all of us. For this reason we want to give a trigger warning about the content of these podcasts before you continue. We’re going to be presenting interviews with cancer survivors or their caretakers and each podcast is a very personal story about one journey with a life threatening illness. Everyone’s story is different and the speaker’s experience may be very dissimilar to any health journey of your own. In the spirit of deep democracy, please honor this person’s experience and also honor your own. Every voice is one voice of the system. Honor what right relationship with illness means to you. Medical disclaimer: these podcasts are meant to share the personal stories of cancer survivors. The stories are not intended to provide medical advice of any kind. Any questions regarding a user’s personal medical condition or their medical care should be directed to their medical care physician. Thank you.
KC – In this episode Faith Fuller and I are talking with Sally Waters about finding right relationship with death. Sally is a retired mediator and ORSC coach. She has a wife and 3 kids aged 17, 21 and 26. She was diagnosed with Stage III breast cancer in January 2013, and then with Stage IV breast cancer in June 2014 that has spread to her spine. In this episode we’re discussing what it means to be in right relationship with death when a diagnosis is terminal. My name is Katie Churchman and you’re listening to conversations on cancer.
KC – Sally, Faith, welcome to this special mini-series as part of the Relationship Matters podcast, Conversations on Cancer. Faith, welcome back, Sally, it’s wonderful to have you on the show.
SW – Thank you.
FF – Hey Sally. Good to talk with you again and I just want to say I remember having conversations with you many years ago, this has been a long journey for you. And I wonder if you could just say a few words about the length of the journey?
SW – Sure. I was, just know as you said that, I was doing the math – almost 10 years. And you blew my mind Faith when you reached out to me. I was in those early, God, actually you did it twice, I was in those early days of my first diagnosis, I was stage three, and stage three they throw everything they have at you because it’s a cured as intent and you reached out and said can I coach you through this? Free! And I said yes! Oh my god, Faith is going to coach me, that’s something. That was huge, and then a year and some months later we discovered it had metastasized so a whole different kind of treatment but also devastating. I think you coached me in that too, I think, I think I called you, I was brave enough to say I need more and you said yes. And ooh god, it makes me tearful just remembering where I sat and the conversations we had about trees and spring and God, maybe I’m just going to die from this. Maybe I’ll just say yes, just go ahead and die, because even though I had little kids I was so… I didn’t do menopause well. I thought well maybe I can do death well. You know, I can be this gorgeous earth mother and yeah, that would have been really cool. It didn’t work out like that but…
FF – Well, you know, forgive me if I say it but neither of us knows, maybe we still will be earth goddesses with dying, it’s not here yet after all.
SW – Yeah. And I mean just the notion of, I don’t remember my birth but I think I slipped in very easily and I hope I slip out with grace.
FF – Boy, with you on that. Yeah. There’s two things I’m gonna ask you about. One is I saw your oldest daughter, she made the most beautiful Facebook reference to you the other day and there’s two things I want to talk about. One is the impact that your kids had on your fighting to live as long as you could, I remember maybe conversations and maybe we start there? Talk to us a little bit about, you’re the first person we’ve had on who has kids and I think it’s really important as I think the experience of people with children, and yours were young 10 years ago, impact your survival journey. Would you be willing to talk to us a little bit about the role your kids have played in your surviving?
SW – Yeah. So, I have three children, you’ll hear lots of different pronouns because they’re on their own journeys so I won’t be consistent in referencing but my youngest was six, seven, and my oldest was 16, three in total, and the oldest – all three are adopted – and the oldest had just come to us as a foster, less than a year before my diagnosis and so she came into what she thought was going to be rest but, you know, you can relax and be a child now but it was much messier than that. And the other two had known only us from babies but I was, everything was about staying alive for them. Every decision I made I was not going to turn things down. I really had a notion, an intention, of going into treatment with as much compassion for my body as I could because I knew I was asking a lot of it. So I wasn’t judgey about oh my god you’re sure a burden or you’re so whiney, I just allowed myself to ask for what I needed and that included with the kids. And the way I do sick is I’m an animal and I want to go into my den and so my kids have to come to me. I didn’t go to them much. I was pretty sick on the first chemo they gave me, the first treatment, an 8-week thing, and so I was in bed most of the time and middle of the night hospital visits a lot because I was too much, and I had these intentions and (sighs)… but I lived and they lived, you know, it was not a romantic Hallmark movie at all but they were very motivating to me and my poor wife, her, she’s an amazing mother, but her rule became sit by me and hold my hand. She had a very hard time and she talks about it to this day, really being as engaged a parent as she always had been because I was so sick and she felt like I needed the attention then. And I would say to anybody listening, if you haven’t figured out who your tribe is to come in and help at home, now’s the time, you need people to come help and you need to ask for it. And if you have to go pay for it, you know, anything to help your kids get what they need. I was home schooling the youngest at that time which, you know, fell to pieces and I had some family help with that just to get through it. It was horrible. Second time through, stage four diagnosis, same. You know, same but different. It was really hard to tell them that this was a chronic condition I had now and that I had no clue if I was going to collapse next month or in 10 years. My goal was to be an outlier and I am. So I met a goal. I really want to be a statistical anomaly, more than anything! And by then the kids were old hands at this and, if you know what I mean.
FF – They adjusted.
SW – They adjusted, you know, it’s our language and checking in. You know, ‘mom, do you think you can do that’, ‘what’s your cycle, are you going to be well enough to do the carpool’, well let’s see, what day of the cycle will I be on? It’s kind of like periods. You know, you know what to pack for if you’re taking a trip. You’re just always thinking. And I had some years of no evidence of disease, some doctors call it remission. I don’t know why here in Nebraska they don’t use that word but I actually had breaks from identity as a cancer survivor and a cancer patient, and my kids therefore got breaks too, and my wife. So it hasn’t been all drama these 10 years. I’ve had good long, years long, breaks. And then there would be more progression and they’d switch me too a different chemo. So I’m kind of at the end of a very long list at this point.
FF – I just want to say Sally, as you mentioned, you are an outlier. You’ve been 10 years with stage four, almost 10 years, and I think one of the reasons we wanted to invite you to join us in this is because I want there for people or for care givers who have people who are stage four to know you can live a really long time and that in a way, for many of us, there’s a way to adapt. Not easy but life goes on in a particular way and I remember the ferocity with which you talked to me about I’m going to live for as long as I possibly can for my kids, and now here they are grown up. I just want to say you got the most beautiful email from your oldest daughter talking about the preciousness of sitting by your bedside. And I know that we worry as parents that we’re going to traumatize our kids because we’re sick, and I’m sure we do! But, there’s power in what they learn from that journey as well.
KC – Yeah.
SW – I have to believe that what they gain is greater than what they lose, having to be a part of a very rough go in terms of the parent gamble, you don’t know what kind of parent you’re going to get and I thought they were going to be so lucky to have me and, you know, it just doesn’t work out. It just doesn’t work out the way you can fantasize about oh well, I’m going to really do this mothering thing.
FF – You’re going to be a super mom.
SW – I’m going to be amazing. Yep.
FF – Well, I just want to say of course you would say that but given Marcella’s letter to you, your eldest daughter, it was pretty amazing. Remains amazing. And I wonder if you can speak, I hear your humbleness, could you speak to what you think your kids did gain being mostly grown up now? There are other parents that worry about this.
SW – Yeah. Great question. Well I think they got to see what it looks like for a partner to shift into caregiver mode, lucky, lucky family, that I’m the one that got sick and Susan became the primary caregiver because I nurse, like I do, illness, which is I just retreat. I’m a den croucher. And even if I’m the care giver, it doesn’t occur to me to go in and stand by someone and hold their hand. You know, yeah, I’ll bring you some soup, ok. But only because the clock says its lunch time. I really am very poor at it. And Susan and I have had great conversations because she over cares according to my book, and so for me to understand there’s this huge spectrum. My kids got to learn there’s this huge spectrum and this is what it looks like done richly and fully, so I think that’s big. And they got to hear us having conversations about every aspect of what I just described. I think they, I think they got to see somebody both muster through something that feels crappy and hurts, muster through it and yield to it. Because, you know, I do a dance, I know Faith you do, you just, you do a dance. You can’t say well from now on it’s going to be like this and I’m going to approach how I feel in this way. It’s very fluid and the cancer changes therefore I’ve got to change my step too. You know, there’s a relationship there just no question. I hope they’ve learned connectedness to body, to self. Because there definitely is an entity in me called cancer and it’s me, it’s like Russian nesting dolls and, you know, it’s a part of me that got reckless and out of control and will not be contained but it’s just me, it’s not evil.
FF – Yes.
SW – It’s just me out of control. I’d never heard or used viscous or violent language about my cancer, like oh I just want to get it out of you, even when they were little, it was always a much more curious approach to the body and I consider that something good for them. And maybe they don’t even use it now and I hope they don’t have to use it for a long time but chances are they will for their selves or others. And I think they saw the family, yesterday was the first day I had to use a wheelchair. You know, this big monumental on the inside events that normally you see something hitting those milestones over a very long period, you know, your parents age kind of thing, your parents needing help. I’m only 65. I took my youngest to a college tour, he’s a junior in high school but he came to me and said you may not be able to next year, can you take me this year? So that’s one of the things that they’ve learned – seize the day.
FF – Seize the day whilst it’s here, right now.
SW – Yeah, I did the same thing with him. He was supposed to wait until age 13 to get a piercing. You know, ears pierced in those days. And we did it early because I had this diagnosis once I hit stage four and I’m like I don’t want to miss that. I want to help you pick out cute earrings and so we did it anyway. That kind of thing. And to have him pushing me all over the, thankfully fairly flat, campus – that was a big deal. That was a really big deal on so many levels.
FF – He’ll never forget that. He’ll never forget that.
SW – And we did it alone, just him and me, because Susan had a tooth pulled and, you know, I’m coming out of this chemo from last week and I’m still busy, so we just did it. We just did it.
KC – I was just thinking about, there must be something around when you’re young, life does feel like this endless, you get endless time. And I wonder what life choices they’ll make now because of what they know, we’re not guaranteed 90 years, 100 years or even 70 years. How that is a gift to them now, to choose the choices that are really help them live the lives that they want to lead.
SW – Yeah. All of this. I hope, when we were in our twenties and thirties, felt kind of immortal. Unless you have a baby, maybe, I didn’t, Faith I can see you’re nodding. God, the luxury of that kind of thinking.
FF – I know. That you’re going to have forever, that you’re going to have 90 years, I know.
SW – And not only that, they’re going to be 90 years that feel like this. You’ll have plenty of energy and…
FF – I got it, yeah. Well, you’ve brought it up and I wanna go there and that’s that I know you made a pretty important decision this past week about chemo and continuing treatment and I’m very grateful that you said you would, you know, wouldn’t mind talking about that choice and so I want to invite you just to let people know the choice that you’ve been making about your own end of life and treatment.
SW – So, about two years ago I came out of no evidence of disease, I had had a nice chunk of time and my cancer, my breast cancer, has only been in my bones, my spine specifically, and in a small region. And you know, so, whilst I’ve had problems with pain and pain management, it’s not in vital organs. You know, the treatment was ickier than the disease, really, except for pain and as it’s just speeded up, but still, not a vital organ. And the good news is it’s not going to kill me and the bad news is it’s not going to kill me. It just gets worse and hurts and is not going to kill me, and there’s no logical anything about it to say well this is enough. And a year ago it had leapt up quite vigorously so now it’s in my skeleton, not just in my spine, and created real misery and the doctor said you know, I’ve got this chemo, I’d really like.. I think you’ve got years left in you and I’d really like to see you really make it back off again. And so I did. I wasn’t thrilled about it but there were no softer, gentler treatments available to me anymore. And I was just as sick as ever and a total zombie for Christmas to about this time a year ago, I can hardly tell you anything that happened. I was really a zombie. They had wanted to get nine treatments in me and I could only manage six or five or something and I said enough. And I swore off, never again, I will not do this again. Did some good pain management work, some new therapies are available and I did those last fall and my body’s feeling eyy, here we go! And it raised up its head again and it’s kind of all over, not just in my bones, but, the good news is, there was an unexpected soft tissue tumor which is meaningful because the original lump that was removed from my breast, I don’;t know what happened, but the sample was compromised or lost or somebody unplugged the freezer or I don’t know what happened, but it’s unavailable and getting biopsy out of the spine, bone of any kind but especially the spine because mine are all inside the vertebrae, and they have to be careful, they have to use a needle to try and get a bit of bone sample and they can’t get much and then they press it between the glass of the slides and it crushes and isn’t usable. So, no good samples to work with, no genomic testing for me until this soft tissue. And so last week they did a good biopsy, they got a great sample. I went on a chemo that my doctor said if we can gnomically test you for 22,000 variants out there, mutations, then we can customize you something. And I’m all for that. If that becomes available tomorrow, I’m saying yes, I’ll try it. In the meantime he said, here’s a chemo I’d give a 90 year old lady. Just in the meantime, because it takes week for them to create this and analyze and so on, just start. So I did. It’s a weekly and I did week one and I woke up yesterday realizing I’m not even going to do this temporary one you give your grandmother, I won’t do this. So I made the decision that I’m not going this temporary thing. I’m letting nature take its course. If a good customized chemo becomes available I will try it, but I won’t stay on it unless I can live my life still. Because this is bullshit. I’m asleep around the clock on this particular one, for four days and I have days, five, six, seven to start recovering and then I’m back in. and they do it to me again. And side effects that are just terrible.
FF – Not worth it.
SW – It’s not worth it, no. You know, I don’t see a… I’d like to have a long future but not if it feels like this. And I got, I’ve had good conversations with my kids, I’ve had for years, but especially in the last month, talking about medical assistance in dying and having agency over my own death. My mom just recently died and she was in a hospice so there was lots of good information coming from that direction about, this would be in Colorado, about wonderful resources in Colorado for dying at home, dying according to your own choice of when and where and that’s what I chose. In fact, my plan is, the oncologist said if I don’t treat this with chemo I have 6-9 months and, you know, I’m not waiting until the ragged end. I don’t know what 6-9 months looks like. My plan, and I’ve discussed it with my siblings with whom I’m very close, some of whom live in Colorado, is to rent an Airbnb and throw myself a house party for a week or so that is my funeral but I get to be there and, you know, lots of drinking and carousing and smoking and… you know, kids of all ages are invited and let’s sit in the jacuzzi outside and you know, I know what months of the year would probably be really good for doing that in Colorado and Susan and I are working slowly on what that might look like. And I’ve talked with the kids about my intention to die of breast cancer according to my timeline. So…
FF – And how does it feel to make that decision Sally?
SW – It’s wild, you know. I just, oh my god, this is my last mother’s day coming up probably. And even if they do get a swell chemo which is just bespoke, it may not do, you know, there’s still all may be irrelevant planning for sooner rather than later, but just the notion of I’m not going to hit one goal which is to see my youngest graduate high school, but we’re doing other things like my oldest and I are going to start Pinteresting on the phone together because she wants to plan her wedding with me helping here, so we’re going to create lots of Pinterest boards. We can, you know, have the pleasure of shopping and you know, picking out things that we enjoy doing together.
FF – I’m struck again by it’s a seize the day, you know.
SW – That was her idea, that was her brilliant thought. She told me yesterday mom, can we do this, would that be ok? It’s so smart. But yeah, I’m, how is it, you know how is that, to say a year from now I won’t be here. I’m not tearful about it. You know, I can be tearful at the drop of a hat these days but that’s not the main reaction, the main reaction is let’s see. God, what’s the state of the freezer, we’ve just got a side of beef, we’ve just got a side of beef, I’m the cook in the house and my wife had to, just sheer coincidence, had to start a vegetarian diet for her GI wellbeing, and you know we’re out in cattle country, this is where a family, an extended family shares a steer, it’s what you do. And I’ve gotta figure out food for a year. I want to. That’s how my head, so that’s how it is. I’m thinking about some pretty pragmatic things. And then I think about Christmas a little bit, but not oh, I want this to be the most special Christmas, nothing like that. It’s more oh, my family plays a white elephant gift exchange, God, do I have the right stupid gag gifts for that?
KC – There’s this amazing poem I always think about and I can’t remember who it’s by but it’s written as someone who’s died looking back on their life, and they say ‘If I were to live a day it would be a normal day’, and it’s those kind of things like the white elephant, the fun, the play in the hot tub, the little things that make life right, they’re the big things.
SW – Yes.
FF – Well, the other thing that I think and this is a little bit strange, but I think when you make the decision I’m not going to keep on with the treatment, life gets very focused again. And I think having lived for 10 years with the shoe waiting to drop all the time, all that uncertainty and also it’s one place where you can have some control over how, and if anything about cancer is true it’s that you don’t have a lot of control, you know, the cancer does its own thing. You can chose to submit or not submit to different treatments but I know the statistics say that a lot of people get the pill, as they call it here, for death with dignity, and not everybody uses it but there’s something about knowing when you can chose the when, the how to not be in pain that you are no longer willing to tolerate, is powerful. So there’s that but there’s also again that intensifying of every experience becomes precious.
SW – Mmhmm. Yes. And for me it’s not just the how, although that’s huge because I don’t want to leave a mess for people to clean up, you know. I really cringe at the idea of grieving people having to deal with the ickiness. But the when of it, the when of it is everything for me. I can’t tell you how comforting it is to know that I can chose a date and the day can show up and I can change my mind, you know? That’s something that’s different about me in the last couple of years, is, for anyone who knows enneagram, I’m a nine, and it just means I’m kind of a people pleasing person by default, you know, I got work to do and that’s my work and that helps me, even as I’m planning my death, I still need to be doing my practice of waking up from the slumber of personality and my personality invites me to care more about, oh, how’s that impacting them than to actually think of my own agenda and am I moving through life taking care of my business and meeting my goals and needs and interests. And so purely in, I think, a very intentional way, I am not worrying about how’s this going to affect or not affect other people. Susan and I were talking about dates and, well, you know, what about the youngest in school – he’ll miss a couple weeks of school because I’m dying, that’s ok! But you know, just that kind of pragmatic, senior year and you know, it matters and it’s hard to turn that off and I said, uncharacteristically, I’m really proud I said this, probably shocked her. I said I don’t want the timing of my death to be shaped around whether he misses school or not, that’s not my priority. And you know, God, I sat taller in the chair after saying that because yeah, this is the biggest thing I have to give, to be, I’ve got nothing to follow this so I want to do it exactly the way I want to do it and when.
FF – Well, I’m aware of time and I was wondering whether, if there was something that you learned or, and for that matter, an ORSCy thing that was useful for you, would there be anything you wanted to offer in terms of your learning from the process or rules that might be useful for listeners?
SW – Well, number one and probably because I have the advantage of you coaching me through my initial several months, I don’t know how long, I don’t know when it started and when it ended, I only know the view out my window so I know it was Winter, and you coached me and that gave me vocabulary and it gave me conceptual grasp of cancer as an entity, as something I have a relationship with, you know, and that I could be compassionate towards my cancer that’s just trying to do its job, you know, that’s all it is. Like we all are. And you gave me little things that stuck with me, when I started doing radiation you offered the notion that giving yourself to the light and that sticks with me to this day, I give myself to the light is an important phrase and I’m not always doing radiation but I’m in a land now where I have to use language that suits that land, and I give myself to the light, it’s meaningful now and it wasn’t 10 years ago.
FF – Yes.
SW – There’s all kinds of healing that can come when I give myself to the light. And, you know, all I had to do was step into that other land with 100% desire to understand how things were done there and what it wants of me. I still don’t know the answer to what’s cancer trying to teach me. That was in my early journal, I used caring bridge as an open journal. I don’t know why I didn’t keep it private as I normally would so it ended up being sort of like a blog for me and I remember, I was re-reading, I love having it at my finger tips and I can go back and look at it like wow, yeah, I remember that.
FF – I’m struck by a couple of things Sally, one is caring bridge is designed for others to know the journey but I’m struck that it’s also been a diary for you, of the journey. I’m not sure we that anoybody thought about but it’s a diary of your journey with a cancer.
SW – I was asking myself the question early on, what is it here to teach me? I want to learn from this, where should I put my attention as I’m doing this because the energy will follow if I just look at the right spot or, you know…
FF – No, I was going to say, you know, I’m just deeply touched I, in terms of what you said about giving yourself to the light because, without thinking about that all Sally, I have begun my own practice of trying to feel light inside, without a drama but the idea that there is a, within me there is life, you know, and the divine radiating, somehow. And some days I can feel a little bit of that and some days I just don’t, I’m just pissy and clay footed. But something about, it’s untouched by the concept of giving ourselves to the light, whether we’re dying or not, what does that even mean, I don’t know. But I want to thank you for giving that image back to the both of us.
KC – I’m hugely touched, Sally, by your courageous curiosity, You embody that. That should be a metaskill, courageous curiosity, and it is an honor being a part of this conversation with you today.
FF – So Sally I just, you know, I’ve put my hands up to just take yours and want you to know that I look forward too, at some point, finding you in the light, whether it is, you know, a short period of time or years, I do believe at some point I will find you in the light and thank you again for sharing your journey with all of us.
SW – Thank you again, it’s a real honor.
KC – Thank you Sally.
[Music outro begins 32:09]
FF - Thanks so much for listening to this episode of Conversations on Cancer. We hope you’re finding these talks as meaningful as we do and, because every individual is unique, we know that every cancer journey is different. These podcasts may or may not reflect your own experience. We encourage you to honor whatever your own journey is with illness in your life.