Relationship Matters

Conversations on Cancer Ep.5 - Right Relationship with Uncertainty

May 25, 2022 CRR Global
Relationship Matters
Conversations on Cancer Ep.5 - Right Relationship with Uncertainty
Show Notes Transcript

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 Stephanie Kleine-Ahlbrandt about finding Right Relationship with uncertainty.

Stephanie Kleine-Ahlbrandt is a certified Leadership and Organizational Coach and Consultant, who has worked for more than 25 years on some of the world’s most intractable conflicts with the United Nations, governments, and global think tanks, traveling to over eighty countries and living in Asia, Europe, Africa and the Americas. She was diagnosed in March 2021 at age 52 with inoperable Stage 4 Cholangiocarcinoma, a rare and incurable bile duct cancer with poor prognosis.  She is being treated at  Memorial Sloan Kettering in New York City where she has so far undergone 40 infusions of platinum-based chemotherapy.

Key 

 

KC – Katie Churchman 

FF – Faith Fuller 

SK - Stephanie Kleine-Ahlbrandt

 

[Musical intro 00:00 – 02:32] 

 

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 and I are talking with Stephanie Kleine-Ahlbrandt. Before becoming a certified leadership and organizational coaching consultant, Stephanie worked for more than 25 years on some of the world’s most intractable conflicts with the United Nations, governments, and global think tanks, traveling to over eighty countries and living in Asia, Europe, Africa and the Americas. She was diagnosed in March 2021 at age 52 with inoperable Stage 4 Cholangiocarcinoma, a rare and incurable bile duct cancer with poor prognosis.  She is being treated at Memorial Sloan Kettering in New York City where she has so far undergone 40 infusions of platinum-based chemotherapy. My name is Katie Churchman and you’re listening to Conversations on Cancer. 

 

KC – Stephanie, Faith, welcome to Conversations on Cancer, a special mini-series as part of the Relationship Matters podcast. Faith, welcome back, and Stephanie, welcome to the show. 

 

SK – Thank you so much, it’s great to be here. 

 

FF – Glad to be back! 

 

KC – Stephanie, I wonder if you can start by giving us a sense of your journey with cancer as it stands? 

 

SK – Yeah, so I was diagnosed last year in end of February. It was a pretty surprising diagnosis, I’ve, you know, been very active as a yogi and a cyclist and a runner and hardly ever sick. I was diagnosed actually at stage four with something called cholangiocarcinoma which I had no clue even existed, with a tumor in my liver of 11 by 8 centimeters which has been deemed inoperable and there’s been spread to the lymph nodes, so this kind of cancer is, it’s a rare bile duct cancer, it’s got super pore prognosis for those that want to dig into the internet which I don’t do, I’m just trusting my doctors. It’s rare, it’s sort of 3 in 100,000 people, the average age of patients is 70 so it’s quite like a few decades older than I am and so transplant and removal is not possible because of metastasis so I’ve been on chemo for like, I’ve had 40 infusions, I’m the chemo girl, I just keep going, they just keep injecting pretty heavy platinum based drugs. And I’ll be on that treatment, really, for the rest of my life. So, yeah, that was, that was a bit of a shock and at the same time, you know, it’s been really just a really rich learning journey, not one I would have chosen but it’s, you know, I liken it too.. I spend two and a half decades working all over the world, with the UN and the US government, so I liken sometimes like, so those trips were always unviewed with uncertainty. You know, I’ve basically been going to countries that my country didn’t have dialogue with, so focusing on countries like Iran and North Korea and Myanmar and, you know, I really always loved that challenge but with that is a lot of like unpredictability, sometimes these countries are less stable, and so in a way I feel like I’ve had a good preparation for another journey, right, another like you know, getting your passport ready and getting your reading done and stuff like that. And, you know, looking back, I’ve had this amazing life of love, creativity, adventure, joy and learning, so that’s kind of the background to just diagnosis. I didn’t ever think I would be looking at having this kind of illness in my early 50s but basically, impermanence is a feature of our world. It’s a volatile, uncertain, complex and ambiguous world and that’s what I basically devoted my career too, is that notion. So, you know, if I can’t apply that in my personal life what would have been the point of all that, of all that life and all that living? So it’s been, it’s been really really interesting. And I thought I wouldn’t want to be travelling anymore because I’ve sort of been to 80 countries and done all that but I find myself travelling every 3-4 months to different places with family, dear family members that I just want to get in all the time I can with just because it makes me so happy and feel so alive. I also can go incognito because I don’t look sick so no one like on a scuba boat, you know, suspects in any way that I’m living with a terminal illness and so I love that balance as well, like when I go into Memorial Sloane Kettering I’m a patient, they know you by your date of birth and your name and then I leave that behind, right? That is a part, that becomes part of your identity, right, it’s one of your roles. In ORSC terminology we work with roles. But it’s important also to have all the other ways in which we’re vital in the world and to make sure to focus on that, so I hope that helps as a sort of minor introduction. 

 

FF – I think that’s great and actually I love where you’re pointing in two places. One is I love the idea that cancer is a travel journey in the same way that going to Myanmar would be. The locals a little different, you’re going to infusion rooms and doctor’s offices but you have to prepare, you have to get there, you know the scenery is very different and I think it’s a great way to think about it. And I love the idea that you’re still travelling, it’s just a little different.

 

SK – Yeah. Absolutely, absolutely. I mean the travel, I make the travel across town into Memorial Sloane Kettering but that’s a whole world in itself, it’s its own land, it’s its own country, it’s its own bright universe and actually I did a petition early on there and, through that, got to know a lot of the patients and yeah, I mean, there’s so many beautiful people that are affected by these illnesses, right, whether terminal or otherwise, and it’s hard to see people sort of bowing down to the medical system because we do need conventional medical, right, without that I wouldn’t be here and it’s so important and yet we’re so much more than that, right? But yeah, that’s one of the challenges I think of living with a cancer diagnosis. 

 

FF – Well the other thing is that just that sort of sense of uncertainty, I think the topic for our podcast today was going to be right relationship with uncertainty and this is sort of the thing, the big show when it comes to uncertainty around this. If you think about uncertainty, it certainly is a huge theme around my life as well. And what do you think is sort of the most interesting or challenging thing right now about uncertainty in your life right now? 

 

SK – Also, you know, in many ways to be fully alive is frankly to be constantly thrown out of the nest, right, in a way? And I think everyone knows that after the past couple of years and as we go forward right there’s a lot of questioning as to the virulence and the severity of new strains of Corona, what it’ll mean for everyone, right? I think the key is to live fully in what can seem like a no man’s land. That seems to be the key to me. For me like, you know, I’ve done a lot of neuroscience work and lead webinars on resilience and I think, I like the idea of the continuum between curiosity and fear to a certain extent? Like the more we lean into growth and curiosity the less fear there is, right, and that’s important because I think nothing ever really changes until it’s taught us what we need to know. If every experience is a teacher in that way there’s always fear. There’s so many reasons to be afraid and, you know, I think so many cancer patients just really hate the experience and sort of run away from it but I’m trying to sort of see it as like experiencing each emotion as something new and to remember that we call things good or bad but do we really know, right? Do we really know at the end of the day like when the event happens, what it is? So it’s sort of can there be room for it all including, you know, a lot of physical and emotional pain, right? And not really knowing where that leads. And there I think it’s important to look at, I like the term of the first and second arrow. So the first arrow is what happens to you, right, something happens, you get a diagnosis or you lose your leg or… and so the second arrow is the anguish that we inflict upon ourselves by that event. So we get to decide, it’s a Viktor Frankl thing, in between stimulus and response there’s a space and in that space lies our freedom. So we decide how much we’re going to suffer from these things. And there’s also a sort of suffering = pain x resistance so if we can lean into that and, I must say, it’s not easy, yeah, I had a harrowing hospital stay and I can expand on it a little bit later if you like, where I really had to, you know, when you’re in deep, deep, deep pain, you’re not leaning into the philosophical what am I learning from this? You’re like oh my god, what do I do to stop this pain, right? So yeah, those are just like a few of the things that I’m looking at with regard to uncertainty, a few of the things that are alive. You know, resilience in neuroscience is comprised of like radical acceptance, reframing and gratitude. So I think I’m always doing those to a certain degree. And yeah, and leaning into anything that helps me get there. So, you know, we were talking about humor, we can talk more about that, so I wonder if that gives you a preliminary sense of sort of some of the themes around uncertainty that I’m looking at? 

 

FF – You know, I’m right there with you, I also find that uncertainty changes the time frame, my sense of time is quite different in that because I can’t sort of think I’ve got a long time, I’ve got 20 years, you know, or I don’t even know whether I have two! Probably, but you don’t know. So given that you can’t dream forward you have to stay much more in the moment so it really is very much about what choices do I have about today or this week or whatever is happening around that. And that’s an enormous change. Not a bad one! That’s actually a good change for me. 

 

SK – Absolutely, absolutely. I really, really agree with you on that Faith. I think, like you said, a terminal diagnosis like gives you a view into reality that others rarely see and that’s like the fleeting nature of our existence and how precious our time here is. And I don’t know if you read Oliver Burkeman’s latest book about time management, about Four Thousand Weeks, I highly recommend it. But he says, you know, he speaks about four thousand weeks as the average human lifespan and to borrow, if I like superimpose Mary Oliver onto Oliver Burkeman, it would be the question then of how are you going to spend your one wild and crazy four thousand weeks? And so every day that you wake up you’re faced with choices right, and in a way illness and in particular terminal illness I think provides this fast track to what truly matters, right, it gives you that discernment, whether it be how much and what kind of work you’re going to do, how many friends can you constantly update on where you are, you know, I’m not doing like the sort of having a cancer page and all that sort of stuff, I just, yeah, it didn’t speak to me. But learning how those friendships change, right, what does that mean? How are relationships with our partners changed? And, you know, I think all of this helps us reach into also our common humanity because again, like when you scratch the surface, illness and disease is something that afflicts so many and I think Faith, you’ll have seen that when you talk to people about your diagnosis everyone’s got a story of someone that’s dear to them or even themselves, some challenge that they’ve gone through along these lines. So that’s very humbling and it’s very connecting and one of my, you know, one of the values that I’m leaning into, or metaskills if we use the language of Organizational Relationship Systems Coaching is that connection, like deep connection with our humans right, loving on our people, really. 

 

FF – Yeah. Well I’d love to talk about that a little bit more also in that one of the themes that comes through in these podcasts is that cancer isn’t one person’s journey. It’s not the person who has cancer, it affects our families, it affects our partners, our kids, you know. Any insights or thoughts or experiences around uncertainty with people that we love. 

 

SK – Yeah, I mean that’s been such a journey because in the beginning, you know, when people hear about your diagnosis they want information like lots of information and I feel like all of us have lived many lives, right, but every single different country I was in I have a whole different host of people from there and everyone is so well meaning but it can get overwhelming. So what I’ve done is really sort of had to titrate my sort of inner soul tribe, in a way, and then another layer of people with whom I’m also in touch and then there’s actually been a few people that I’ve met through different coaching training only in the last couple of years that have become very close friends, right, because coaches in particular are always sort of grappling with these types of issues and helping each other through things. But I think the ghost of the future has become part of relationships that has been really difficult and, you know, friends that are mourning our future in which we would all be batty old women with long gray hair and, you know, purple and green hats, travelling the world. You know, there’s been a mourning for potentially that not happening, for their not to be that kind of a future and so there’s grief, right? All the stages of grief around what a friendship could have been and yet, as we also know, and Faith we were talking about, is just that uncertainty. Like we could be here 3 months, we could be here 6 years, we could be here 30 years, right, there’s nothing inevitable about things having to end quickly, right? So yeah, it’s, I have so many incredible sort of well-wishing friends, way too many people on Facebook, like 2000 or something and no energy to keep up with all of them and so being in right relationship with everyone is something I really struggle with every day. And also I spoke with my partner at the beginning of my diagnosis about how much information to give because his idea was give them a lot of information and then they’ll stop asking and I’m like no, give them a lot of information and they’ll come right back to know all the latest details. So I had a few friends who were kind of messengers for my different friend groups like my friends from the UN, I had one friend who spread it all to them but then they kept coming back like with the next installation, right, like she’s had chemo, well then now what happens? So that’s really, that’s really challenging and yet I think if anything love and connection and friendship is what it’s all about. And the friends that I have that are the closest to me are just, I really couldn’t live without them. I really couldn’t live without them and thanks to coaching, thanks to the amazing contribution you’ve made Faith to the world, along with Marita and others, to bring this really revolutionary coaching practice, we have a vocabulary. I actually did some ORSC work with my son, coaching with my son was so helpful because you can look at the system of he and I, I don’t want to get too into the details in case there’s listeners who haven’t taken the Organizational Relationships Systems Coaching, but it’s helped us figure out how much information does he want and need? It’ll just worry him unnecessarily unless it’s something that he absolutely needs, but he needs to feel informed at the same time so how do you balance that, right? And so we have periodic check ins with a coach who can ask us those questions and it’s just really comforting to have that type of a process, it might be more difficult if it were only he and I, it’s because it’s such a weighty topic. Yeah, if you’ve seen things like that yourself Faith? 

 

FF – Absolutely, I mean I think, it never occurred to me, I think that’s a fabulous idea that I could get coached on that with somebody and of course it’s a relationship issue. You know, I could have had a VA, I’m smacking my head, I could have got a coach on this. But I do experience there’s a constant need to design with different people how much information they want because there’s almost, and one of the ways I do handle that is that I’m happy to give people what I call ‘here’s the cancer report’. 

 

SK – Nice. 

 

FF – And it’s shorter or longer depending on who the person is, but then after that I wanna be able to say ok, that’s the cancer report, now let’s move on, I’m taking off the patient hat and I want to put on the friendship hat and talk about, you know, what’s going on with your boyfriend or whatever! 

 

KC – I remember Faith, when we started these conversations you were like I don’t want too much reverence from you and I remember you saying that specifically because it was almost like you don’t want to be stuck in that role of patient the whole time and I wonder Steph if that’s something you feel as well, it’s like I wanna be my old self where you make fun of me and we have jokes and it’s normal! 

 

SK – Oh yeah, oh yeah. Totally. I mean, you know, Faith and I had talked about, I only put on my little patient hat one day every week, right? And then I go in and do the heavy duty, and then the rest of it, like I’m the one putting out most of the gallous humor just to show people that I’m super comfortable with it. And then there’s humor that you have with people who aren’t familiar with cancer and then there’s the beauty of the humor in the cancer community which is completely irreverent and sardonic and, like, just super fun. And we were talking with Faith about that, like about, there’s so many, you probably, so Faith and I were talking, I told her about an Instagram called the Cancer Patient which posts memes about stories about life with cancer, just so funny and beautiful, and then Tig Notaro is a stand-up comedian who went ahead with a scheduled appearance like a week after being diagnosed with breast cancer and became kind of an overnight sensation because her routine, that night, famously began with walking on stage to the applause of the audience saying thank you for coming tonight, I have cancer, thank you, thank you, I have cancer. And then she just launched into her routine and she was just, it’s really beautiful. So I love that, like I love laughter and humor on delicate moments and all of that. And then just for fun I looked up whether there were any studies on this because I got so much entertainment from it and I found all these peer reviewed studies on Laughter, Humor and Cancer: Delicate Moments in Poignant Interactional Circumstances. Right, and like, the impact of humor in patients with cancer. I mean it kind of dulls it because I don’t want to, I’m doing it for the fun of it, not because it could help my outcome, but I just thought that was fascinating, right, to look in and find sort of research done showing that laughing is good for you, which we all knew. 

 

FF – Yeah, the other thing I think about then is people often worry about how, what should I say? You know, can I… there’s all this question of how do I talk to somebody who has cancer and I think the simplest thing is just to be direct about, you know, designing an alliance with them around that. There are some people that don’t want to talk about it, I’ve known people who keep it a secret, they don’t want to talk about it, yeah. But there are also people, I think, to a certain degree like you and me Stephanie where it’s like it’s a thing happening in our lives, if I keep you out then we’re not having an authentic relationship. 

 

SK – That’s right. 

 

FF – And so, but I think, you’re the one that said there’s something to talk about the C-word and I found that totally intriguing. 

 

SK – Yeah. I think that, you know, there is like a zeitgeist in a way of cancer, just, it’s this big frightening thing for people because it has generally like, as you said Faith, like some people, well, at first doctors used to keep it a secret from patients which is absolutely unbelievable and I’m trying to remember a book that I read around that which was really fascinating, but the way in which the medical community deals with it and then the general public, right, it’s just like verboten, such that there is this documentary only a few years ago, 2016 or 2015, called the C-Word, right, because of that level of uncomfortability, that extends to the relationship in our society with death, right, the irony that humans, we plan for what, we plan for school, we plan for college, we plan our careers, we plan our families, we plan our children’s lives, we plan our retirement and then we stop at planning the one thing that is absolutely certain to happen. Right? And which everyone knows how to do because we’ve been doing it since the beginning of time, just because we’re scared of the unknown and are comfortable with what we know and so, yeah, my sense is dying is actually living and so for me, death is going to be a few days, a few hours, how am I living with that in mind? How am I living with the fact that this is ephemeral, right? How am I bringing that knowledge into my life. No one is happy to die but we should be happy to live so that when that comes we’re at peace with it. 

 

FF – Yeah, well I love, you know I’d never heard that way before and I loved when you said to me just what you did which is that death is part of living. And we never think of it that way. There’s living and then there’s this thing that is separate that is death but it’s kind of ridiculous. It’s, as you say, the one thing, you know, along with taxes, death and taxes that’s absolutely guaranteed we’re all going to go through and yet it’s this dirty little secret. What happens then is that I think you’re left, there’s not much, somebody said to me there’s no role model for how to be with dying. 

 

SK – Well so I actually, you know, when I got my diagnosis I was like ok, get my affairs in order and then I started reading all the books. And there are some great books like Frank Ostaseski, basically most written by people who have worked with the dying and have sat through thousands of deaths. And so there’s a lot of beauty there, right? But the challenge that I had was I’d make a plea right now to people to think about, you know, how much are you accumulating, like, I have a thousand passwords that’s somebody’s going to have to go in and actually undo subscriptions too, I don’t know how many different coaching related or bank related things, so just thinking about that, now I’m trying to open no accounts but you can’t live like that. We’re living in a digital world, so yeah, it’s like maybe the equivalent of Swedish death, cleaning your internet likes, you know, and I like, it’s like maybe it’s Marie Kondo your digital footprint. Just think about, because it’s also, let’s be honest, it’s just leading a simpler life to a certain extent. We don’t need thousands and thousands of accounts and different things. But no, it’s, exactly, I totally hear you on that. 

 

KC – There’s something that Faith mentioned on another podcast around how when you’re faced with something like this you can’t not phase some of the challenges, particularly in relationship, that you haven’t faced until now and I’m wondering if you’ve had that? That sort of moment of like wow, this is there and I have maybe less time to deal with that? 

 

SK – Tell me what you mean, sorry, like I’m getting a sense… is it like… I mean I’ve had only one or two relationships that went very far back and that really had to be relegated to like a level where it’s not as frequent contact because that person, for whatever reason, maybe the relationship was more one sided, I generally, you know, being a good coach I’ve come from a co-dependent background so helping others through their troubles, right, and then the tables turned which is part of the learning for me, right, can you ask for help as opposed to being the helper or everything and everyone, and those relationships had to change and they become relationships that aren’t as prominent, is that kind of what you’re asking Katie? 

 

KC – Yeah, and then I also wonder then, in terms of those parts of self then maybe, that’s perhaps where I’m sort of pushing towards, is parts of self that maybe you’re not feeling in right relationship with, have you had to face some of those too in these darker moments that you’ve mentioned? 

 

FF – I can fill in there a little bit in that there was a period of time in chemo where I felt like I was doing a tour of all my least favorite selves. 

 

SK – Yeah. 

 

FF – It was like oh my god, I’m such a bitch. There it was right in front of my face and I hadn’t had to really deal with that because I didn’t feel so sick or down or whatever and suddenly, wham, it’s in my face and I had to come into relationship with those parts. 

 

SK – Yeah, let me think, I mean, there is this thing where your values become more important so you’re in a way more likely to live those out by saying no to things that you don’t want, right? I guess for me, it’s been a little bit of a, it’s been interesting in terms of how risk adverse am I? And I do chastise part of myself because most cancer patients in a Covid context are kind of living in a little bubble and I’ve kind of done the opposite, like, since being diagnosed I’ve been deep sea scuba diving and sky diving all over the world, from Hawaii to Honduras to Peru to Belise to Mexico, and is that irresponsible? Like is that, right? It sounds like a lot but it’s only like once every three months and it’s with my family, with my son who, he’s harder to get time with than anyone because he’s doing a double major in astronomy and international relations because he wants to go into space policy, so I have to get onto his calendar and he’s honestly one of the people that I, my heart breaks to think of the effect of illness on him. In fact when he, he learned about my illness he was taking a gap year and he was doing ecological work for Maricor in California and he was on a date at a bookshop with this amazing woman who’s now his girlfriend and like, urm, I think I’ve got like a tumor on my liver and I’ll tell you more later, like, so poor kid right. So there’s that part of me like am I being the mother that I need to be and what does that look like? It’s very hard, I think  you can be very hard on yourself, like, if I have a bad day, so my chemo, so it’s cumulative, it’s toxic as all get out and I can be completely kind of exhausted and I need to allow myself that time, like, cancel everything, do everything I need to do and it’s hard, like we get a lot of value out of our doing selves so I’m having to step into my being self and say, you know, in this circumstance, if I get through today, that’s a success. That’s been hard, that’s really hard, stepping into that part of me, and also, when I first got diagnosed, everything like all the hardships I’ve been through in from investigating genocide in Rwanda in ’94 to being in Bosnia just after the conflict, it’s always been for a greater cause. So whether it’s like, I’ve had a lot of crazy stuff happen, I’ve been attacked by soldiers and tear gassed and everything but it always felt like it was to help people, whereas this cancer is just like my, all the effort going in is, so to speak, only to save my life. So that was really edgy. Like, this is worth, I am worth it. Even when I almost needed a blood transfusion I was like oh no because that should go to other people. Well no, I can be entitled to a blood infusion, right? But it’s like, it’s the anti-patriarchal, colonial like, I’m entitled thing, it’s almost like I’m not entitled, it should go to someone who needs it more than I do, so that’s also tough right? And also recognizing that my healing does, it will have an impact in the world, it will have, in whatever way, it might be through the collective consciousness, it might be through my friends who watch, who accompany me through this. There’s ways you’re contributing and you can’t see it right away and so that’s been really difficult, to define myself differently. Also my coaching, like I have some amazing high level contracts with government agencies and international organizations’ and sometimes I’m like oh my god, the chemo is really messing with my brain, I have to take really detailed notes so that I remember this person. I never had to do that. I could see a face, all the details would come. Oh yeah, last time we discussed X or Y. So there’s a lot, there’s a lot to lean into like also, I don’t multitask like I used too and that yet that defined me. So who is Stephanie without that ability? Well, she’s a bit slower and she’s looking at things a bit, from a more of a bird’s eye view, right, like the holistic stuff, the conceptual self, not planning things that requiring a lot of planning or leaning on people, there you go, like can you plan that? You can plan that vacation for us. So there’s a lot and I’m still trying to work out, like I’m still not happy about the chemo side effects. You know, the neuropathy as well, I’m super active and it seems to come on just when I’m like 120ft underwater or on an amazing bike ride or all the way up the Hudson river, you know, it’s like why can’t I feel my hands? Who is that Stephanie? Can she also be ok? Is there space for that? So I don’t know if that helps answer it? 

 

KC – I think I remember Faith you saying as well that you’re a creator and to have that part taken, particularly on your weeks after chemo, you felt like a big part of you just wasn’t there in those moments. 

 

FF – Yeah. I think, you know, actually, Stepahnie’s really pointing to the fact that there could be a sense of your identity and your role’s change, almost can change, almost day by day. 

 

SK – Yes! 

 

FF – And so, you know, you may be a wonderful long-distance bike rider but then the neuropathy kicks in around mile 10 and then suddenly your roles change all over again. Or the struggle I think that is sometimes there for me in that I think one of the reasons I go with the bald head and why I am pretty upfront about the cancer is because it’s really hard for me to feel un-integrated, I don’t want to impose my diagnosis on people because it changes the scene but at the same time to not be able to be honest about the fact that no, I can’t meet on those days because those are the days that I have infusion, it’s awkward! 

 

SK – Yeah, that’s true, that’s true. And you’re so right Faith, it’s the unpredictability. Like if I could plan to feel like crap on Wednesdays then I wouldn’t have any coaching that day or right activities. But it really is, there is no rhyme or reason to it, like you wake up thinking that it might be a good day and it happens not to be a good day and if the majority of my days, I mean, I’m really lucky because I have this terminal awful cancer, I’m still super strong, I do work out every day except for if I really can’t move, but it’s really the unpredictability, it’s just sort of, I even when I was over scheduling coaching before I learned I can’t do that anymore, I would be taking half an hour naps between because I could hardly keep my eyes open and I’m like this is not helping my clients. So we’re gonna completely rejig this. It’s really that uncertainty that I think is the hardest part. 

 

FF – I just want to touch in for a moment also because I don’t think we’ve talked about this on any of the other podcasts, but I’ve been somebody who’s hugely invested in my intellect and, you know, I’m a producer, I’m a contributor, I’m a quote-unquote “thought leader”, and then suddenly my IQ dropped by, you know, 30 points. Not all the time, again, it’s very unpredictable, but to find that I can’t always find the right word or I don’t remember what happened when I would have had a mind like a steel trap before, I think that’s been one of the most difficult things for me, is being able to let go of that mind like a steel trap thing and to find ways to be able to be gracious with that, with myself and with others. But any thoughts about that because I can tell you’re somebody who’s sharp as a tac too. 

 

SK – Oh yeah. So, yeah, I mean my whole life I have, I think in a completely different way. Like writing, any writer will tell you, writing is super taxing, right, but it’s become very difficult. It’s become very difficult to sort of do that and have coherence of thought, I have to be very sort of clear with an outline, never had to do that before, could sort of just jump in. Yeah, the wording, so I liken it too, I speak a few languages, I speak French pretty fluently and Chinese pretty well as well, it’s that feeling when you haven’t spoken, for me it’s Chinese for a while, I can feel the word but it’s not coming out or I can even see the characters but the word’s not coming out, and then that happens in English! In my own native language! And I’m like what! What is that? Yes, it’s very disconcerting and I keep telling my doctor I can deal with everything but it’s this, the cognitive impairment and he’s like well I don’t think there’s any studies on it and I’m like yes there are, here they are, because I looked it up, because he’s super smart, I have to be a few steps ahead. But it turns out these studies are only on mice, bloody hell, right. And I think it’s because, they probably don’t do studies because these drugs are saving our lives. They’re saving our lives, but, you know, Faith and I, we’re talking, for me, quality of life is more important than quantity. It’s really, for me, I would rather have an amazing 6 months than a crappy 1 year and that will always be that. I think we’re in that minority in that sense because I do see in my groups a lot of people with disease very, very desperate to do almost anything. I’m not really one of those people in the ICU getting resuscitated and all of that. None of that. I have access to medical aid in dying if that should be something I need, I truly support those movements, there’s a great PBS documentary by Diane Rehm if anyone’s interested, about her husband who was unable to avail himself of those medicines. For me though, I want to be fully awake and conscious and all of that but year, the side effects… 

 

FF – One thing that is guaranteed and this isn’t at all bad, I just want to say that, it’s wherever your identity is most tensely lodged, whether it’s in your mind or in your body, all of us are identified in different ways with ourselves, but you know, cancer’s going to mess with it and in a way it forces us to move beyond so, you know, I’m still plenty smart but who am I and how can I be in right relationship with myself when I’m not a mind like a steel trap? 

 

SK – Absolutely. 

 

FF - And it’s not, you know, it sounds like, well, I think it’s a constant journey to find out can I be compassionate with myself when I don’t have anything super to offer, you know? On a coaching call. 

 

SK – Absolutely. Absolutely. Like you said, it’s a constant redefinition of what your super powers are, and it does, you know, luckily it helps us lean into intuition. It helps us lean into active listening. It helps us to lean into all sort of things that are of benefit to our clients. Right, in a coaching call. 

 

FF – Yeah, and I think, I’m just looking at the time and Stephanie you were extraordinary when I talk to you about all the different ORSC tools that you think have been helpful, you know, and I would love to have you talk about what do you think are some of the top ORSC skills have been helpful on the journey? 

 

SK – So, there’s so many, really. But I love the concept of edge crossing, right, there’s a lot of models for how change happens but living more with the fact that, you know, life is not eternal, right, as opposed to that being a daily thought to myself, like I said I used to do a lot of death meditation but it isn’t like, it’s not something you wake up with on your mind, you know, there’s all these edges of before you have cancer to hearing the cancer diagnosis, right, you’re stepping across a huge, that’s a huge change, right? There’s also, for me it was also like I’m not afraid of death but I am afraid of being really sick all the time, you know, what’s that gonna look like? So thank god I’m not sick except for one hospital stay which actually completely confound the doctors for like a week and they ran all sorts of tests, I was in 10/10 pain and it was literally because I happened to have pizza for lunch a big Indian dosa meal for dinner. How humbling is that? There were like 12 doctors on an email list and they were all trying to figure out what is going on because all the liver enzymes, everything was on the roof, and I had told my doctor before I’d got admitted to hospital, look, I’ve had this big meal, could it have been that and he goes this is not from a meal. And then they went in, they did interventional radiology, they did all this stuff and like I was on this super high, this dilaudid pain relief and then it turned out they were just, medical science is not science. It’s just throwing noodles at a wall and trying to figure out what isn’t wrong. And then they came back and they were like well we think it must have been the meals. So what does that mean, well that means Stephanie can’t go out and go eat tons of… my Indian friends were in town, we went to the best Indian restaurant there is, so that’s not a sick person, that’s someone, like I can’t eat a big Thanksgiving dinner anymore, my system is different. That’s a big change. So I think the edge crossing model, right, I think we’re in continuous and constant reencountering and redefining our edges in this disease. 

 

FF – Which we probably were doing before but suddenly it’s really in your face, yeah. 

 

SK – That’s right, that’s right. You know, high dream, low dream, so many ways that applies right. And so many ways, like you said Faith, in the minute it shifts. Right? What was once your low dream is now your high dream! 

 

FF – Yeah. 

 

SK – Right, you know. I don’t know what your low dreams are but one of mine would be like to be totally dependent on someone to take care of me, totally over medicated, just hanging on for like something like that. Also like how much suffering am I gonna have? That could be something. I think also secret selves, that’s basically like internal family systems parts. All my parts have something to say about this disease, you know, like the inner critic is like well, you must have exposed yourself to chemical, what was the cause of this? You must have been doing something wrong – that’s like an inner critic voice, but then you know, I have my wise inner crone as well weighing in and saying hey honey, it’s gonna be fine, you’re just gonna sleep, that’s what people do, you’re sick, trust me, there’s things that are going on you might not understand but your body needs to rest for now and there’s trusting in that process, right? Or, you know, just looking back at all the wisdom already gained. I feel like I’m in constant integration. They talk about the five stages of grief, like I went through all of those really quickly and now I’m just sort of just in this sort of David Kessler stage which is like meaning making, what is the meaning here? And it is super freeing, right, like everything that happens I’m like ok. Like even when I had that hospital stay I’m like ok, that means the cancer is spreading so ok, we’re looking more at this time frame or we’re looking more like a life like this, I’m gonna call my friends to do this, but then I didn’t have to so that’s kind of the beauty, right? So just can you be with this in every moment? 

 

FF – Yeah, and who are you with this in this moment to moment to moment, you know, you’re also touching on something I don’t think we’ve talked about before which is it’s guaranteed that cancer will bring up every button that you have rather not be pushed in your life, and I hadn’t even thought about the issue of dependency. You know, and I think for many of us who are go-getters in our lives, the idea that suddenly oh my god, I might be dependent on somebody, is probably one of the most difficult things I can think of. I’m not good at being dependent on somebody, you know? And how do I have grace about that if that happens? I almost feel like I better get some grace about it or it’s guaranteed to happen to me because I’m gonna, again, it’s a spiritual teacher. You’re going to have your nose pushed into everything you haven’t dealt with. 

 

SK – That’s right, and that’s part of our Western society, we’ve learnt to be so independent, we’ve learned to take care of ourselves and I think in fact the life cycle shows that we do end up almost, right, it’s almost like birth and death are a corollary and we end up super dependent, almost like a baby. And so it’s designed to teach us those things and particularly in our western culture that’s difficult, right? Confucian cultures there’s this notion of the collective, right? More this is the family, the family system is very, very strong. But no, that’s definitely, that’s definitely an important issue so I’ll be interested Faith in knowing how that evolves. 

 

FF – Oh you bet, yeah, me too. And Stephanie I, this is always an awkward question but is there anything that you would just want our listeners to think about or know, there may not be, but if there’s any last opportunity for you to add something in about your journey, what you’ve learned or whatever, what would it be? 

 

SK – It would be, it would be like that whatever you have going on in your life, recognize that we have agency in how we approach it, right? And also life is precious. Like what are you, who’s the person that you love very much that you haven’t told about recently? What is something, what is the dream of your heart that you haven’t yet started to look at. Or are you really living your values? And I hate to be cliché but like you know, if you were to be given a terminal diagnosis, what would you be doing differently from what you’re doing now? And I have to say, my closest friends who are totally amazing, most of them are impossible to live your life, obviously, as if you have 5 years or 2 years to live because that’s, it’s not human, we plan for the future. But many of them say you know what, I would be doing what I’m doing right now. And if you can say that you would be doing more or less, with some changes, like you would be living the way that you are, that’s pretty amazing. Right? It’s probably very rare. Yeah. 

 

KC – Thank you so much Stephanie for this hugely insightful discussion, I’m taking away a lot and I’m sure our listeners are too so thank you so much, and Faith as always. 

 

FF – Absolutely, sending you a huge, big hug Stephanie and we’ll talk some more, thank you. 

 

SK – So lovely to be with you this morning, thank you so much, thank you. 

 

[Music outro begins 48:15] 

 

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.