Be the Best Advocate for Your Health with Dana Deighton

May 3, 2021

Episode Summary

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are joined by Dana Deighton, the project manager of Inspire, who is sharing her amazing personal story of resilience, grit, and advocacy. Dana shares how she found out about her diagnosis, the frustration and complications of her journey to reach an effective treatment but most of all about the importance of not giving up even when everything seems to be against you.

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Episode Transcript

Kristy Dickinson: Welcome back to another episode of Simply Unbreakable, a podcast put on by Chronically Simple, I am your host Kristy Dickenson with my cohost and friend Brenda Agnew. And we are so excited to introduce our guest today. Dana Deighton is – professionally she is a project manager with Inspire and we're going to talk a little bit about what Inspire is later on in our podcast.

But personally she's just got the most amazing story. I was introduced to her through an acquaintance who shared and article about Dana's journey that was published in The Washington Post. And after reading that article, I knew that Dana was someone that we needed to connect with. Her story of resilience and grit and advocacy is beyond inspiring and I could not be more excited to welcome her here today as our guest. Hi Dana.

Dana Deighton: Hi Kristy, thank you so much for having me. I am so excited to chat with you and hi Brenda, it's so nice to meet you.

Brenda Agnew: You as well.

Kristy Dickinson: So let's get right into it, because I know we have a lot to talk about in a short period of time today. I wanted to ask if you could start with just sharing a bit about your – basically your journey to your diagnosis. A bit about your healthcare experience with us.

Dana Deighton: Sure, thank you. It's quite a long one, so I'll try to zero in on the salient parts of it that I hope will you know provide a little inspiration and encouragement to others that are on their own diagnostic odyssey, because it can be quite intimidating. And I know it was for me and I find that when you talk about things you very often come across people that have an experience that they can share that while it might not be the same, it really might help you.

So it's always good to talk and to listen to, because you always will probably walk away with something new. So I will back up to about 2012, I was 42 years old and I had three very young children at the time. I think they were gosh like five, seven and nine or somewhere around there, the ages get a little murky now that they're older. And you now I was enjoying life, I was working fulltime, I was traveling a lot for work, I was travelling with my family, we were playing baseball and soccer and volleyball.

And doing all the things that you know the suburban mom does, trying to juggle it all. And it was busy and I was tired and it was OK, I thought that’s just the path that my life was taking. And that summer in 2012 I went to Montana on a work trip, it was a very fortunate work trip, because I got to hike around Glacier National Park and see some amazing things and white water raft and things like that, so it was a great work trip as far as they go.

And I noticed that I was a little sore, every day my joints were sore and I thought goodness I must not be used to the elevation or maybe I'm just getting older or maybe these are harder hikes than I'm used to. And you know I sort of convinced myself that that was the case because why else would I be that way. I had basically exercised and been running and walking and weightlifting and you name it, like every day since I was 14 and started playing organized sports in high school.

And it's always been part of my life and it makes me feel better and you know I can't imagine a day of not doing that, I actually feel worse if I don’t have that activity. So I just thought it's got to be age or terrain or something like that. And the trip wrapped up, it was a great trip, went home and I did you know think maybe I felt a little bit better. And then one morning a few weeks later that summer I woke up with a searing pain in my shoulder.

Also in my wrist and a few other joints and it was like knife burning pain it wasn’t arthritic. Even though I didn’t have arthritis I just knew that that couldn’t be what it was. And they were swollen and almost immobilized, I really couldn't do much with my joints. I was tired like in a way that I had never been before. I looked at my face, all of a sudden I had a rash which was so much more than a sunburn, which I don’t normally get that much of anyway.

And I started doing my own research after a week or two of that and Advil which I usually did not take, but I had to at that time was not even cutting into the pain. I was losing sleep, so I started doing my research and you quickly stumble upon you know rash, joint pain equals lupus and I was like no that can't be.

I had this you kind of distant understanding of what lupus was, didn’t know there were a million different types, but I knew none of them probably were good and I knew that they might slow me down. And that was just like a death sentence, because I was already busy keeping up with my kids and not feeling like I was doing a good enough job.

So I couldn’t relinquish anything to illness. And I quickly tried to figure out like who do you see for lupus, I mean I had always been so healthy, I had no idea. Figured out it was a rheumatologist and I kind of simultaneously lined up a couple of appointments. And that’s where like the long hard journey began. And the first rheumatologist that I saw, you know he ran the ANA panel and he did some other test.

And he said yeah you know sometimes it just pops up, might run in the family, it could have come from some infection, like either parasitic or like maybe you ate some bad potato salad in Montana and your body is just reacting. He said I think we can fix this and I'm going to put you on hydroxychloroquine, which is of course what has been in the news for COVID over the [unintelligible 00:06:31 year].

And I said OK, OK, that sounds fine I guess, I mean I really had never taken any medicine, but whatever, I need to feel relief, I was miserable. But I kept my other appointments with the other rheumatologists that you know I just sort of found in my own research or through connecting with others. And the next rheumatologist said I don’t know, seems like maybe pre-lupus, it might just like fade away and you know don’t worry about it, I just don’t see this really being your fate.

So stay on the hydroxychloroquine for a little while, but I have a feeling that this is more of a transient thing. And then the third one I saw was like no it's not lupus at all. OK, don’t really know what to do with that, but because I was miserable, I was like I guess I better stick with the first guy, because at least he has an option for me to try.

And so I did stay on the medicine and after a couple of months I actually did start to see some real relief. I wasn’t waking up in the middle of night with a stabbing pain, I was able to move around, continue my travel. I mean I definitely felt that there was still something going on, but it was much more manageable. What did not go away was the face rash and that really bothered me, it was you know just kind of unsightly, I'm not super vain as you can see now but what you see is what you get.

But you know that’s just such a reminder of an illness and not feeling well. But I was just excited that the medicine was doing its trick. So I made it through the fall, you know feeling better, but one of the other lingering symptoms that I had and probably got worse was super chronic fatigue. I'd make it through the work day, but just barely and I couldn’t figure out how to even sit at the dinner table with my kids, I was becoming very uncomfortable, very tired.

My abdomen and my back were kind of achy and I can sit for a little while, but then I'd have to go lay on the floor. And then that started to bother me too and I'd have to go sit somewhere or stand somewhere, just because of the really chronic and constant ache around my midsection.

And just the tiredness, I thought you know I'm only 42, like how can this be. I went from like running a million miles an hour and now I can barely do long division with my kids and take them to practice. So because the stomach issues began to become worse and persistent without any breaks, I went to a general practitioner who was new to me, because I didn’t really have a family physician.

And she sent me to a gastroenterologist of course, that is the one doctor that I had really seen, because my mom had passed away of colon cancer several years ago. So even at my young age I had already had at least three colonoscopies, because I vowed to myself that I was going to stay on top of you know the test that everybody should do and I knew I had to start early.

And I never wanted to like have that you know take me away from my kids. So luckily those frequent colonoscopies were all clean and my gastroenterologist didn’t think I needed another one, because I had had one in the recent past. She said it must be irritable bowel syndrome or something. So she prescribed yet another medicine to relax those muscles, didn’t help at all and I knew in my head that that’s not what it was, it just wasn’t.

But I didn’t know enough about autoimmune issues and their connection to inflammation and cancer for me to help connect the dots at that time. So I tried it, it didn’t work, the pain became worse. And when I say pain, it wasn’t stabbing, it was just constant tiring ache, which really like wear you down quite fast. And nothing really was cutting into it.

And I went back to my family doctor and she suggested a few other things, but I knew also that wasn’t it. And I kind of touched my neck, like just put my hands around my head or my neck and I was like this just is awful, what am I going to do. And at that moment I felt a lump in my neck that I had never felt before.

And it was a cervical lymph node that was huge, it was you know if you cut a little golf ball in half, it was that big. And how I had not noticed it before, I just don’t know. It didn’t hurt, but it was huge and [palpable] and ugly and all of that, kind of behind my ear almost. So after I discovered that and talked to my family doctor about it, she ordered an ultrasound and sure enough it showed necrotic tissue and that led to a fine needle biopsy.

And that was sort of yet another mile marker in like another beginning. Because that biopsy came back as a I think highly differentiated, inconclusive piece of tissue, which leads nowhere. So I'm still feeling miserable and couldn’t you know like barely stand up, can barely walk and I just thought what is going on. And so finally a cat scan was ordered and it showed inflamed lymph nodes in my abdomen.

And long story short, that’s what was causing me the discomfort because they were kind of strangling my intestines and the pain was migrating to my back. So we biopsied one of those and that came back completely you know inconclusive and undifferentiated. But in a different way than the cervical node, nothing matched up. And so that began a huge quest to figure out – you know we knew it was cancer at that point, but not what kind and the markers were inconclusive.

Usually they can tell like kind of where to start looking for a primary, like breast or lung or brain. But because I had two inconclusives that didn’t match at all, it was sort of a wild goose chase. And so I underwent pretty much every test in the sun, had you know tissue from my lung taken, I had a GYN test that was like none other after – even after having three kids I never experienced anything like this.

It was like the magic chair that like flips you upside down and around. And it came back negative for urine or cervical or any other GYN cancer. There were some opacities in the lung, but they were not helpful either. And one of the last tests that I had was an endoscopy, which interestingly enough the gastroenterologist never ordered. Because I guess it seemed odd to order that to her when I did not have any heartburn or anything like that, no trouble swallowing.

And that endoscopy showed a tumour in my oesophagus down at the junction with my stomach. Nobody could believe it, because most people with oesophageal cancer have chronic heartburn, have trouble swallowing, a chronic cough, you name it, like there's just a million different telltale signs. And I had none of them, all I had was the malar rash at that time and the vague pain in my stomach.

You know at that point I had to find an oncologist and since I hadn’t really had a lot of experience, I went to the place down the road from me, they were able to see me. And all they could say was gosh so sorry, like you know oesophageal cancer has a very poor outcome. And it was clearly stage four at that time since it was above and below the primary site in my lymph nodes.

And the first thing they started doing was talking about palliative care. And I didn’t even really know what that word meant then and it's interesting, because now I absolutely hate that word. I can understand its usefulness in some cases, but I didn’t care for the way they went straight there for me. And they clearly didn’t know what else to do and at that time I knew, I was like OK I'm going to have to look for other help.

I knew enough to know that you know maybe there's a trial out there that could help me. And I learned that trials were usually more available at major academic institutions. And so I started finding appointments and connections there and luckily I had so many friends and family and coworkers who you know just knew people and they got me into places.

Like you know all of the major places – the cancer [centres] that you hear about where appointments are really hard to get. But I got them left, right and centre, one after another. Unfortunately most of the physicians even though they saw a lot of oesophageal cancer there, most of them still were like you know I'm so sorry. Like you know get your affairs in order, enjoy this time with your kids and we will try to make you comfortable so that you can do that.

And it just – that was unacceptable to me, you know at that time my kids were like eight, ten and 12 and I just thought you know I know what it's like to not have a mom. And I was 30 when I lost my mom, but there's no way I'm checking out, you know with three at this age. And the physicians kept telling me sorry the cancer will eventually beat the chemo, we're going to put you on the best thing we have and we can change it up, but there are still very limited options.

And they kept saying that that’s what the dataset said and I pushed them a little bit. I had been doing a lot of research and I said well your dataset is filled with you know generally speaking men that are 70 and above and indulged in things that I haven’t, like drinking and poor diet and not a lot of exercise. And how can you keep putting me in that bucket.

And it still wasn’t getting the attention of most of the physicians. And the one thing that pretty much all of them said is Dana you're going to have to choose one of us and you're going to have to get started on systemic treatment or like there's nothing any of us can do. So I did quickly get started on a chemo regimen and it was a rough one and went through all of the bad stuff that comes with it. The hair loss and you know nausea and all that stuff.

But I was really super lucky because I had some significant tumour burden resolution with every interval scan that came along and no one could believe it. But I still wasn't getting any traction for like what's plan B, what can we do next. And most of them just kept saying well you know there aren’t many second line treatments, but we'll see what we can do. Maybe we can like adjust something from lung cancer or whatever.

And I just kept reading, reading, reading, reading, reaching out to the very few people that I could find that were survivors of it and believe me there were very, very few. And of them they had been through such trauma, most of them couldn’t even remember what had happened to them or didn’t want to talk about what they had gone through and just wished me the very best.

And there were many days of like desperation, but I think when you do have young kids, it's fight or flight and I was not willing to run away from it and I had to fight. And I learned that like for every new piece of information you can find, whether it's exactly pertinent to your condition or not, it might be useful to drive another conversation. You know do some more research and that equals hope to me.

Because if you can get from one day to the next and just get up the next morning and keep doing the same thing, all of a sudden you've threaded together many days. And you've created new dialogues with your physician or new providers that you wouldn’t have had. And I would walk into some of the doctors' offices with my notebook of questions and they would just look at me, like where on earth did you find that.

And I do think that there was even some trepidation sometimes, because they thought what is she coming in with this time. Like people didn’t really – I could hear them say we've only got 10 minutes for you today, I'm like well I've actually got 20 minutes' worth of questions.

And sometimes it wasn’t really met very graciously, but I did find one physician, one incredible expert who is just so amazing and he saw more life in me than cancer. And he was one of the few people that really recognized I was not in that data bucket with everybody else. And he saw you know the determination and he saw my otherwise good health as well.

And that I think encouraged him to look a little harder and look under rocks that hadn’t been turned over yet. And even though the other academic centres had said that I was not a candidate for radiation or surgery despite my improved scans, this physician helped me find that. And kept me as healthy as he could during that process.

And that process lasted you know a year/two years, like a long time. The radiation that I finally ended up receiving actually gave me better reduced tumour burden. And I felt better and I mean I was running and was doing all of these things. I was way back to helping my kids and playing with them, I was still working fulltime. And I knew that there had to be – you know there had to be a way to just get rid of this.

And I was able to meet a surgeon who first thing he said to me was like you know this is a conversation I never have with stage four patients. Because usually it's just not going to happen, but he said I can see where you started and where you are and where you can go and we shouldn’t be having this conversation, but let's have it anyway.

And so we took the steps necessary to get me ready for surgery, which included some more chemoradiation. And just some other tests to make sure that you know there wasn't anything else going on inside of me that would make this harder. An esophagectomy is not a surgery that anybody would want to have. For mine they take part of your stomach and make that part of your oesophagus, which they remove the diseased part.

So it ended up being an over 15 hour surgery and a pretty long recovery, but thanks to my incredible team, very multidisciplinary team who was willing to help and you know amazing family and friends, that was six/seven years ago now. And I did have a recurrence because oesophageal cancer is just that tricky and it often ends up with a recurrence.

But that’s also part of the story that I like to share, because it did kind of suck hearing that it came back, but I had lived long enough through the previous few years for immunotherapy to [unintelligible 00:23:07]. And you know sometimes timing isn’t perfect, but that hope that I talked about, just getting from day to day got me to where I was.

And immunotherapy well it wasn’t approved for oesophageal cancer, we were able to get it through compassionate use. And you know they didn’t know for sure if it would work, but it was worth a try. And sure enough I have been on that for a number of years now and it's like my lucky charm and I'm so thankful and grateful that it was developed, the hard work – the hard studies had been done.

My doctors knew about it and that was you know yet another rock that they turned over and convinced me that it was worth a try. And I'm just so very grateful for it. I'll circle back to all of my inconclusive biopsies.

Part of the reason that they didn’t match each other is because I ended up being microsatellite high. Which is a condition where you have kind of more mutation than other people and so your cells divide and mutate in many different ways. And that causes the mismatched biopsies and a higher tumour burden as well.

So while nobody wants to have that, because that’s probably behind many cancers. In my situation it ended up being quite a silver lining, because it made me a good candidate for immunotherapy, because that’s exactly what immunotherapy targets. And I was just honoured to be able to share this because I really hope that it gives other people a little encouragement to just keep looking. Keep looking for the right team that believes in you and keep doing your research.

And just keep making it to the next day, I always challenged myself to do something every day and if I couldn’t run, maybe I could walk and if I couldn’t walk, maybe I could at least carry the laundry up the steps. And that too became like part of my mantra, just do something every day, because that will help you to the next day.

Brenda Agnew: I have so much I want to say, but what I say is going to be very different to what Kristy says, I can tell you that right now. We're very different on the way that we analyze these situations and what we take away from them. But when I'm listening to you, I'm so grateful that you have found the team that helped you and that you got that.

And that you know you are in the place that you are now and that you have so much hope and that is so amazing and so encouraging. And I love the idea to continue and to keep looking and to keep searching. But the part that comes back to me all the time and I've been through similar situations, not personally, but my son has cerebral palsy with another whole host of comorbidities.

So we've done our chasing down of things. But the first thing that comes to my mind is – you know for people who don’t have that tenacity, for people who don’t have the ability to do that, for people who don’t have the strong support system. For the people who don’t have the connections and thank God you had them.

For the people who don’t have that ability, they would have met with that first doctor who would have said start getting ready for your palliative piece and that would have set the trajectory. So in my experience it's always been it's going to go one of two ways, you're either going to say forget that, we're going to try to [fight] or you're going to say OK. Now if you had accepted that, things would have been a whole lot different.

And so where I really struggle with the medical system is that you know every physician, every team, everybody should be the miracle physician. Should be the magic team, should be – you know that first doctor should have been the one that should have said OK this isn’t making sense.

Let me reach out to my colleagues, let me do this, let me – and instead we put it back on the patient who is tired and sick and dealing with so much emotional and physical and we put it back on the patient. And I struggle with that, I really – I know it's the reality of it and doesn’t seem to matter where you are or what diagnosis you're dealing with, that just seems to be the nature of the beast.

And when you do meet that physician who offers you – I mean I've gotten into a GI before after seven years of really bad chronic constipation with my son, to meet a GI who said regardless of why this is happening, we're going to fix this. And I started balling, I felt so bad for her, she'd never met me before and I started uncontrollably sobbing.

Because I thought seven years we've tried and this poor kid has been through hell and back. We finally find someone who says OK let's fix this and set us on a journey to resolve that and to bring him some relief. But again, I mean I don’t want to [unintelligible 00:28:19] the point, but what breaks my heart is for those patients and those people who just don’t have that next day, who don’t have that move forward, who don’t have that I'm going to get answers to this.

And that’s the part that I really – because when you find those physicians, you don’t want to let them go and you tell people oh my God you got to find this person, you got to find this person. They were a Godsend, they were amazing to me and they do exist and I a 100 percent we've had those physicians in our life.

And I'm so grateful for them, but I think about what it took to get to those physicians and that’s the part that breaks my heart and that’s the part that I feel like people lose hope along the way. Unless they have the kind of personality that you know it's – and I can't say that for me, I battled because it was him, he's my son, I'm going to do everything I can to battle for him.

I don’t know that I would have been the same, I hope I would be the same, but I don’t know, you know. I don’t know that I would have been you Dana, I don’t know if I would have said OK let's turn over the next rock, right?

Dana Deighton: Because you want to be there for him and I think you would have. But you know I do think that there are people not because of their personality, but maybe just even because of their generation, they're not used to questioning what they hear from a physician and they would just take that and say OK. You know I know people like that, I have family members and I'm like what, no.

Kristy Dickinson: Something that you said though that like is sitting right in the forefront of my mind right now Dana is you had a doctor that saw you, not as a dataset and that saw you, not – you know beyond the cancer. And that to me always like I'm so focussed on patient-centred care and we are going to talk about advocacy and how you got to where you could advocate for yourself.

But that’s when Brenda talks about her frustrations and where the system is broken down. That’s almost where I feel like we need a shift. And I am seeing it a little bit more where you look at a person holistically versus you don’t fit in this dataset.

So because you don’t fit in this dataset we're going to tell you to get your affairs in order and you can go home. To me like why aren’t every – I know that they're trained to look you know you hear hoof beats you think of a horse. But when are we going to get to the point where if the horse isn’t there you give up on the patient or you look for the zebra.

Brenda Agnew: Well and to your point Kristy I mean if I'd bring this GI – I'm just bring in that one up because that’s the one that came to mind, because I felt so bad for Dr [Unintelligible 00:31:06] when I broke down in her arms. And she's a very stoic person, so she was doing the old it's OK dear, it's OK.

But what was interesting about it is that all we had heard for seven years was – I mean yeah it's horrible, they try to have some – he has cerebral palsy, what do you want us to do. This is – it's cerebral palsy, it's his muscle tone, it's the brain signals, it's this, it's that.

And when we walked into her, the first thing she said to us after she heard our story is she said I don’t care what's caused this, I don’t care. I don’t care if it was CP, I don’t care if it – I don’t care, it's irrelevant to me, because what we're going to deal with is the condition, we're not going to worry about how we got here, we're going to worry about this.

Dana Deighton: I love that.

Brenda Agnew: Exactly and so what she suggested actually was a treatment for him that had only ever been suggested for people with spina bifida. And it ended up working out amazing for him and I've since asked the question repeatedly, like why are we not doing more kids with cerebral palsy, if it worked for them. They're still sick in the spina bifida world, because that’s where it was developed.

And it's amazing we can't move out of that box, but her immediate response was I don’t care. This is what's in front of us, these are the treatments available to us, let's start here and let's see where we get, because the rest is irrelevant. It doesn’t make a lick of difference, we are where we are now.

And you know that’s where you know I started to hear that piece Kristy is you know it almost – it's important to know the story, because you know – as physicians you need to know what's the background, what's the history. But at the end of the day you have what you have and what do we have available to us to treat that situation.

What do we have available to us to help the patient with that condition and then that’s where I think we struggle a bit. Because you're right, it's a tendency to either say I hear horse, I don’t hear a zebra. And we've had this happen many times with Maclain over his life, he's an anomaly or just simply this is what it is, like let's not look for anything else at this point, because we have this, let's do something with this. And I do think we are getting there, but – 

Dana Deighton: – It's slower [unintelligible 00:33:15].

Brenda Agnew: It's slow.

Dana Deighton: But I love your story as well and I'm so glad you found that provider. I do think there's a lot of – there a reason we have large studies, that you know have a bell curve and that provides a lot of really useful information for many of us with many different conditions. And even helped me, even though I wasn’t in the bell curve. There were elements of many of those large, large cohorts studies that did provide a little titbit of information.

But I think sometimes what is more important than just aggregated data is that not only can it expose similarities, but it can expose those anomalies that you're talking about. And you know those anomalies really not only can provide – they might actually be able to help solve kind of mysteries for people in the larger part of [unintelligible 00:34:21].

In the sense that like maybe there are those exceptional responders and if you can learn something from those people to apply to the larger set, you might actually really get somewhere. That’s not often how we work, I think like you said it's improving and people are starting to look at that now.

But it is really important to have both aggregated study and then to dive deeper into very specific cases, because you can learn so much from both. And the other thing I was going to say is that I mean not every doctor is the most agreeable person personality wise and all of us come across that. I do try to cut them a little bit of a break sometimes that you know they only have – not for their bedside manner, I didn’t mean that.

Brenda Agnew: [I don’t give them a break on that].

Dana Deighton: Right. What I do mean is like you know they're people too and they've only seen what they have seen. Like not all of us have seen like whatever we do in our jobs day to day, we only have the perspective of what's in our like little universe.

And even those physicians at major academic centres, perhaps maybe they just haven’t had the benefit of seeing a lot of outlier cases or something like that. And I think until they have that benefit they're kind of less likely to be tuned into it. And also I had found – I might have shared this with you Kristy.

When doctors, nurses or whoever their provider is, if they don’t have any wherewithal to like understand the way you're describing or articulating your discomfort, you're really talking two different languages. And I think you know they're really at a disadvantage there just to understand you, like how can you treat something that you don’t personally have an experience with.

Brenda Agnew: Right, yeah.

Kristy Dickinson: Your advocacy – I mean your entire story is built on self-advocacy and you know not taking – just not taking no for an answer. And I would love it if you would – if you can share with us kind of what experiences in your life brought you to that point. Because to Brenda's point I think not everybody starts off with that skillset. And Brenda and I have talked a lot in our world about being like the unintentional advocate – like it's nothing that you learn in school, right.

Dana Deighton: No it's not.

Kristy Dickinson: There's no course. What led you to – or what prepared you for how you ended up taking on your journey?

Dana Deighton: Well that’s a good question. You know I feel like I'm kind of a tenacious person anyway, so perhaps I would have rolled up my sleeves and advocated for myself. However I had had a lot of on the job training as I mentioned. My mom died of colon cancer, stage four when I was 30 or 31.

And what makes it like it's worse, it's – like it's terrible no matter how you look at it. But my mom was a registered nurse and she actually cared for people at a doctor's office. And I remember talking to her you know always reminding her to take care of herself, because you know nurses are not so good at that. And when she started having some symptoms and finally it took her to the doctor to get tested, it was stage four.

And she too was told by you know a local oncologist like really not much we can do for you. They did resect her bowel and she ended up being septic and that’s what killed her, although the cancer would have because it was you know metastatic. But I found that it was really hard to get anybody's attention on her care, especially once everybody was in agreement about the poor state of her health.

And I couldn’t believe it and I mean it was the worst suffering I had ever seen in my life. I've told people the smells, the noises, the things you see, you can't unsee and unsmell that, they're awful. They will stay with you for a lifetime and it's bad enough to be a bystander to that, she was living it.

And I could not get good proper care for her in the hospital from anybody – the oncologist, the hospitalist and it was making me insane. So I did my best to clear a path, to get her the oxygen, to get her the pain meds, to get her whatever she needed. And while it wouldn’t have changed her outcome, I hope and think that on some small level it improved the six weeks she had left.

And you know that’s what I have to live with and I feel better about it. And my mom was an only child and we were very, very close to her parents, my grandparents and they were just everything to me. And in some ways like they were the parents that everybody wants, because they didn’t have to deliver the discipline, we did all the fun things with them and we were always together.

And you know by the time my mom died at 61, they were obviously getting up there, they were I don’t know low 80's or something like hat, mid-80's. And they started to suffer from like the ailments of old age, you know the pneumonia, the fractures and just things like that. But overall I mean they were healthy and I was so proud of them for like finding just the faith and the resilience to want to stick around a little bit longer after losing their only child.

But they wanted to do that for me and my kids. And they – I think that’s where I learned to get up and do something every day, because they got up every day, they did – they called them calisthenics. They took a walk and they made time in their day to see my young kids every day and that’s what kept them alive.

And then as they started becoming a little more ill and I needed to help them find more care, it became clear to me that like my grandfather was going to say OK I'll take whatever you give me. And sometimes I was like no, that’s not going to work for you, it's not going to make you feel good and it's going to make you miss your walk later today, so no we can't do that.

And you know I was right by their sides and they both lived until they were basically a hundred. And it wasn’t easy, but I feel like I used my advocacy to fight for the care that they needed to thrive, not to just survive. Because they were those type of people that thriving was all they wanted to do, they did not want to be destined to you know a lazy boy chair.

And it was really, really difficult to make physicians hear that they needed a different treatment than the other 96 year olds were getting. But we got it and I'm so glad we did, because my kids you know had so much fun with them and it just was really important. I think everybody deserves good care, nobody deserves mediocre, marginalized care.

Brenda Agnew: Doesn’t that tie back Dana to what you originally talked about?

Dana Deighton: Exactly.

Brenda Agnew: Looking at the human being and not just you're 96 so you get this level of care.

Dana Deighton: Totally. Yeah I told their doctors, I'm like you know I know who you see sitting in front of you as a bald man that uses a walker sometimes. But you know he was a 100 percent with it, so I really had to work hard to make people hear his story.

Kristy Dickinson: I've learned that watching Brenda advocate for Maclain and in her interactions you now having our sons grow up together, multiple times Brenda's been told what she should expect. And Brenda I'm kind of telling your story right now, but I see a common theme right? 

Like here's his diagnosis and so here's his life. And what I've watched you do is say sorry you don’t know him, we're going to go this way. And look at where he is today because you have advocated for that – that different care, access to different treatments and care and – 

Brenda Agnew: – Well and I think just – I think you know sometimes there isn’t a different treatment, sometimes there isn’t a different piece. But I think it's just trying to – Dana it comes back to a point you mentioned earlier with not all doctors have all answers. But I think humility plays a tremendous piece in that is the ability to say we don’t know, we're not sure.

And you know one of the things that Kristy had talked about and I had talked about Maclain having a lot of comorbidities, but one of the first diagnoses we got for him was actually that he was deaf. And it hit me out of nowhere, because he had been in the NICU [unintelligible 00:43:57], there's lots of stories.

But we got this diagnosis, it hit me out of nowhere. And I remember you know the shock and I could see the spots before my eyes and I could hear the – you know I put my head between my knees if I'm going to throw up. And I remember the audiologist saying to me you know I'm really sorry, this is – you know he's going to be deaf and did you want to learn sign language.

And there was something nagging in the back of my head that I thought I don’t know if sign language is going to work, he hadn’t been given a diagnosis of CP yet. But you know a mom – 

Dana Deighton: – Yeah we have those instincts.

Brenda Agnew: [Unintelligible 00:44:25]. And so I thought this isn’t going to work and I said are you sure, is there nothing we can do to try to see – no this is the diagnosis, I'm so sorry. This is the situation, you know it doesn't respond to any other interventions, you know he'll be a deaf child, but we're happy to connect you with resources, so that your family can learn.

And I came home and I thought no. And I made a call and I made another follow-up appointment. And this is funny, because we went for a follow-up appointment, we went back, we were supposed to go back to the same audiologist. I wanted the test redone, [because I thought well if they] redo the test.

We went on the wrong day, got there – we got there and there was a different audiologist there and they said I think you're here the wrong day and I said oh my gosh I'm so sorry. And she said that’s OK, I actually have time, why don't you come in, you know we'll repeat the test.

Dana Deighton: Awesome.

Brenda Agnew: Yeah. So we came out. Now the outcome was the same and I knew by the length of the test. But the first thing out of her mouth was do you want him to be a hearing child? And I said is that an option and she said a 100 percent that’s an option. He has auditory neuropathy, he could be a candidate for cochlear implants, let's put the paperwork into SickKids right now.

So this diagnosis came January – December 21st and then the end of January, February the 14th we were at SickKids, he was on the list for a cochlear implant that being another advocacy journey. But the bottom line was is that again if we had stuck with that first person and that – you know that’s gone for a lot of things, his ability to speak, his ability learn, his ability to eat, all those sorts of things.

Dana Deighton: That’s amazing.

Brenda Agnew: It is amazing. And you don’t want to be the person that’s always like I don’t want to always be the one questioning the physician, but I'm glad I do sometimes. And you know it's – you know it can set things off on a negative path, because then you become that person. But you know he is a better person for it, he is a hearing child now who has great speech and would never have had that without that. And that actually keeps me awake at night when I think about that sometimes.

Dana Deighton: Oh for sure, that is amazing. And you have to be open to the serendipity of things too. Like you can't plan everything, you can't know everything, but sometimes those little amazing moments happen.

Brenda Agnew: Yeah they do.

Kristy Dickinson: I know that we have – I feel like we could just talk all day. Dana there is so much to unpack here, but I do want to talk about – and there's no – like this is no segue. I just really want to make sure that we talk about where you're working at right now. Because I think it's such – Inspire is such a huge asset and opportunity for anyone that is dealing with any type of healthcare situation.

And you know as we talk about advocating knowledge, you research, you throw yourself into that and a lot of – a big part of that now is community. Like we learn from others. So to your [point], could you share a little bit about Inspire with us?

Brenda Agnew: I want to hear about it.

Dana Deighton: Yes, thank you for asking. Because I'm so proud to work there and I really do believe in the power of Inspire and the power of connection in general. So I found Inspire which is a social health network for people with different medical conditions, everything from cancer to chronic illness.

So I found it when I was looking into my own diagnosis and I just kind of stumbled upon it and I thought gosh this could be such a great resource. Once I finally got a diagnosis, I wasn’t finding too much out there for oesophageal cancer on Inspire or anyone else. And really the fact of the matter is there aren’t that many people that survive it, so there aren’t that many people talking about it.

However and the years went by I stayed at my old job through my treatment and you know recovery and everything. But years later I was like you know I just – I came to a fork in the road with where I was in my career and I just decided I wanted to do something different.

And I wanted to use my experience in the medical world somehow, even though I didn’t have an MD or an RN or anything like that behind my name. And as I started looking I stumbled upon Inspire again which I had sort of kind of let my membership languish a little bit, you know just because I didn’t need it anymore. And I just thought goodness, I need to pursue that.

And I pretty much stalked Inspire a little while reacquainted and of course they had grown more members you know that had rare chronic and cancer diagnoses. They're a great place for caregivers to seek support too, but they basically embody everything that they talked about today. If you can keep a connection going and find a connection, you can get to that next day, you can contribute to a more productive dialogue with your physicians.

And you might be able to you know if not change the course of your diagnosis, you might be able to improve your outcome and that might mean making it to the next day or the next month. For me it eventually meant I made it to immunotherapy and it saved my life. 

So connections mean everything and support is so helpful to just finding compassionate people that speak your language and can just give you a little bit of inspiration and encouragement. So I'm super grateful that they took a chance on me and I'm hoping that you know other people will check it out and just open themselves up to finding a little support and hopefully getting some answers too.

Kristy Dickinson: It embodies what Brenda and I live, that community and people that just understand I think all of us on our different journeys, have good support from our family and our friends that can empathize or try to empathize with what you're going through. But to me there's nothing like being able to connect with someone else who is navigating a same diagnosis.

We're all different, we are all unique, but I learn from you know different people living with [EDS or ankylosing spondylitis] every day. And sometimes it's just a tip or a trick about I don’t know feeling like my input – the little things that can improve your quality of life. It's not going to change my diagnosis, it's not going to change the trajectory of my disease, but to your point it gives me something to hold onto in that day, that moment.

Dana Deighton: Absolutely. I would want to learn from either of you any day.

Kristy Dickinson: Thank you Dana so much for sharing your story and being so vulnerable to sit with us today and I would love it if we could do this again. I think just to drill deeper on community and the needs and I just thank you so much from the bottom of my heart.

Dana Deighton: Well thank you for the invitation and for having me. It was such a pleasure and privilege to speak to both of you and I'm a huge fan. I know that you two have moved mountains for yourselves and your families. And high fives, that’s awesome.

Brenda Agnew: I'm so grateful to have met you and I – like Kristy I have enjoyed our conversation and I'm so, so happy that you are in the place that you are now despite all you've had to go through to get there. And I hope that things continue in a positive manner for you and like Kristy said that we would love to talk to you again, because this has been amazing.

Dana Deighton: Thank you, well I feel the same way. Thank you so much for having me.

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