Navigating Loss: Love, Grief, and Resilience with Bessie Yang Lewis

1 00:00:00,000 --> 00:00:07,640 Hello, and welcome to Every Moment is a Choice. 2 00:00:07,640 --> 00:00:12,580 I'm your host, Erika Behl, and I invite you to join me on a transformative journey to 3 00:00:12,580 --> 00:00:17,720 uncover the extraordinary potential that lies within every single moment of our lives. 4 00:00:17,720 --> 00:00:23,360 From the choices we make in our relationships, careers, and personal growth, to the mindset 5 00:00:23,360 --> 00:00:28,600 we embrace in the face of adversity, this podcast will empower you to embrace the notion 6 00:00:28,600 --> 00:00:33,640 that every moment holds a choice, and it's up to us to seize it. 7 00:00:33,640 --> 00:00:38,080 Join me as we engage in insightful conversations with thought leaders, experts, and everyday 8 00:00:38,080 --> 00:00:43,640 people who have harnessed the power of choice to achieve greatness, overcome obstacles, 9 00:00:43,640 --> 00:00:46,280 and create extraordinary lives. 10 00:00:46,280 --> 00:00:50,880 If you feel inspired by this episode, please read it and consider subscribing. 11 00:00:50,880 --> 00:00:53,580 I'm keen to know how it's impacted you. 12 00:00:53,580 --> 00:00:56,720 My guest today is Bessie Yang Lewis. 13 00:00:56,720 --> 00:01:01,880 A woman I don't know well, but I feel very connected to, through a very special person 14 00:01:01,880 --> 00:01:06,160 who unfortunately is no longer with us, named Scott Lewis. 15 00:01:06,160 --> 00:01:11,960 That connection is not only because we both knew Scott, although I knew Scott for only 16 00:01:11,960 --> 00:01:18,580 a brief period in high school, while Bessie has been his partner for 26 years, but because 17 00:01:18,580 --> 00:01:24,040 after Scott's death in 2022, Bessie started writing. 18 00:01:24,040 --> 00:01:30,160 She's not a professional writer, but she opened her heart and put towards the journey through 19 00:01:30,160 --> 00:01:35,160 grief and her feelings and her vulnerability. 20 00:01:35,160 --> 00:01:41,280 And as myself, someone who knew Scott, it was comforting to feel some sort of connection 21 00:01:41,280 --> 00:01:48,200 to what was happening, but there's also a calmness, almost a serenity in your writing 22 00:01:48,200 --> 00:01:54,840 about profound loss, which is also maybe unintentionally, but it's also very uplifting and hopeful. 23 00:01:54,840 --> 00:01:58,840 And something that inspires the rest of us when it comes to dealing with things like 24 00:01:58,840 --> 00:02:01,280 loss in our own lives. 25 00:02:01,280 --> 00:02:05,520 And that's sprinkled with so many life lessons that we can all learn from. 26 00:02:05,520 --> 00:02:11,880 So Bessie, thank you so much for being willing to come on and share more with us. 27 00:02:11,880 --> 00:02:14,920 Thanks so much for that kind introduction, Erica. 28 00:02:14,920 --> 00:02:21,680 We've discussed this before, but for the benefit of our listeners, can we kind of set the context? 29 00:02:21,680 --> 00:02:25,200 Can you kind of let us know what actually happened? 30 00:02:25,200 --> 00:02:30,820 Because Scott was diagnosed with a very rare disease and most of us don't know anything 31 00:02:30,820 --> 00:02:31,820 about it. 32 00:02:31,820 --> 00:02:34,440 So can you explain a bit more about that? 33 00:02:34,440 --> 00:02:35,920 Yes, absolutely. 34 00:02:35,920 --> 00:02:42,960 So in March of 2021, Scott was diagnosed with a metastatic form of an extremely rare cancer 35 00:02:42,960 --> 00:02:45,320 known as periganglioma. 36 00:02:45,320 --> 00:02:47,240 It started the previous December. 37 00:02:47,240 --> 00:02:52,900 He woke up one morning with a sore shoulder and went to physical therapy, which didn't 38 00:02:52,900 --> 00:02:53,900 improve it. 39 00:02:53,900 --> 00:02:58,820 Ultimately, MRIs showed an abnormal bone lesions in that area. 40 00:02:58,820 --> 00:03:04,040 And then a series of tests led to him ultimately having a PET CT scan, which showed a metastatic 41 00:03:04,040 --> 00:03:09,520 spread of his cancer throughout his body, including his liver, his lymph nodes, and 42 00:03:09,520 --> 00:03:10,520 his bone. 43 00:03:10,520 --> 00:03:13,600 Periganglioma is a rare cancer. 44 00:03:13,600 --> 00:03:18,120 There's a related cancer, pheochromocytoma, and together these are known as pheoperas 45 00:03:18,120 --> 00:03:21,280 for short because they're rather long words. 46 00:03:21,280 --> 00:03:28,000 And I think the best lay person's way of describing what this cancer does is it involves the body 47 00:03:28,000 --> 00:03:30,420 system for releasing adrenaline. 48 00:03:30,420 --> 00:03:37,840 So people with this cancer experience massive dumps of adrenaline into their system, which 49 00:03:37,840 --> 00:03:41,660 can then cause hypertension, strokes. 50 00:03:41,660 --> 00:03:46,640 Many people have depression and anxiety that leads them to not be diagnosed with the cancer 51 00:03:46,640 --> 00:03:50,520 for a very long time because the symptoms can be rather general. 52 00:03:50,520 --> 00:03:55,520 In Scott's case, by the time he was diagnosed, it was very widespread. 53 00:03:55,520 --> 00:04:01,560 And what we didn't quite, I think, grasp at the time was how challenging it would be to 54 00:04:01,560 --> 00:04:04,400 fight a rare cancer. 55 00:04:04,400 --> 00:04:08,980 What that ultimately meant is that there's very little known about effective treatments 56 00:04:08,980 --> 00:04:11,640 for metastatic pheoperas. 57 00:04:11,640 --> 00:04:16,640 In Scott's case, his cancer was caused by a genetic mutation that he had from birth. 58 00:04:16,640 --> 00:04:20,800 A hereditary periganglioma is like maybe one or two people out of a million. 59 00:04:20,800 --> 00:04:24,160 So we're talking extremely rare. 60 00:04:24,160 --> 00:04:29,920 And when we met with the doctors, I am an engineer by training. 61 00:04:29,920 --> 00:04:31,880 I went out, I surveyed the literature. 62 00:04:31,880 --> 00:04:37,160 I reached out and found the nation's experts on this cancer. 63 00:04:37,160 --> 00:04:44,520 We consulted with the NIH, the Mayo Clinic, as well as local closer experts. 64 00:04:44,520 --> 00:04:48,080 And I got a fairly comprehensive survey of the available treatments and really just came 65 00:04:48,080 --> 00:04:54,160 down to just not a lot was known as to what would be effective, in particular for my husband's 66 00:04:54,160 --> 00:04:56,620 specific genetic mutation. 67 00:04:56,620 --> 00:05:01,720 So he ultimately went through a series of treatments. 68 00:05:01,720 --> 00:05:04,200 We tried chemo, which was not successful. 69 00:05:04,200 --> 00:05:08,400 He underwent radiation for his bones, which was successful but caused some fairly severe 70 00:05:08,400 --> 00:05:09,960 side effects. 71 00:05:09,960 --> 00:05:15,320 He underwent a nuclear medicine treatment, which involved injecting a radioactive medicine 72 00:05:15,320 --> 00:05:17,760 into his body to kill the tumor cells. 73 00:05:17,760 --> 00:05:21,120 But ultimately, there really wasn't a systemic treatment that was successful. 74 00:05:21,120 --> 00:05:25,960 So he passed away 14 months after his diagnosis in May of 2022. 75 00:05:25,960 --> 00:05:28,460 And thank you for sharing all of that. 76 00:05:28,460 --> 00:05:33,560 Because I think that when you talked about the prevalence of this is like one out of 77 00:05:33,560 --> 00:05:34,560 a million. 78 00:05:34,560 --> 00:05:39,320 I mean, if you think about something like breast cancer, I think the stats now are like 79 00:05:39,320 --> 00:05:44,400 one out of eight American women will be diagnosed with breast cancer sometimes in their lives. 80 00:05:44,400 --> 00:05:47,320 So you think about, wow. 81 00:05:47,320 --> 00:05:52,520 You said you did surveys to find doctors who were able to treat this. 82 00:05:52,520 --> 00:05:56,760 Are there many doctors in the world who have even seen this and know what to do with a 83 00:05:56,760 --> 00:05:58,180 case like this? 84 00:05:58,180 --> 00:06:04,160 The truth is very few doctors in the world know to look for this, to diagnose it. 85 00:06:04,160 --> 00:06:09,860 In Scott's case, it was, once we knew that he had cancer, even then it took like another 86 00:06:09,860 --> 00:06:12,960 month or so to identify what exactly it was. 87 00:06:12,960 --> 00:06:18,960 And in fact, his very first pathology report identified the wrong rare... 88 00:06:18,960 --> 00:06:20,040 It was related cancer. 89 00:06:20,040 --> 00:06:24,440 He was originally diagnosed with pancreatic neuroendocrine tumor, which is a related 90 00:06:24,440 --> 00:06:26,680 type of tumor, but it wasn't quite it. 91 00:06:26,680 --> 00:06:33,400 It wasn't until we went to a larger hospital and the biopsy was re-examined that we got 92 00:06:33,400 --> 00:06:35,400 the ultimate final diagnosis. 93 00:06:35,400 --> 00:06:41,720 And the fact that combined with Scott's genetic test results, which showed a predisposition 94 00:06:41,720 --> 00:06:48,800 for this type of cancer, made it a fair certainty that this was in fact the cancer that he had. 95 00:06:48,800 --> 00:06:52,560 So I don't think many doctors know to look for it. 96 00:06:52,560 --> 00:06:57,960 And even when you know that you have it, a lot of doctors don't know how to treat it. 97 00:06:57,960 --> 00:07:04,960 There's a fairly common anti-nausea medication that is used and patients with this cancer 98 00:07:04,960 --> 00:07:09,060 can certainly experience nausea, but it's the one thing that you should never take because 99 00:07:09,060 --> 00:07:10,840 it can cause a hypertensive crisis. 100 00:07:10,840 --> 00:07:16,240 I've even had to warn patients on Facebook support groups who've been prescribed this 101 00:07:16,240 --> 00:07:18,540 medication and tell them, hey, look it up. 102 00:07:18,540 --> 00:07:22,440 There's actually, there's drug interactions where you definitely don't want to be taking 103 00:07:22,440 --> 00:07:23,440 this medication. 104 00:07:23,440 --> 00:07:30,320 So really it is so important for patients with this cancer and really any rare disease 105 00:07:30,320 --> 00:07:37,400 to find a specialist in that disease who knows how to treat it, how to manage side effects, 106 00:07:37,400 --> 00:07:38,520 what things to avoid. 107 00:07:38,520 --> 00:07:44,720 We were fortunate in that we had, there's an organization called the Fiopara Alliance, 108 00:07:44,720 --> 00:07:49,040 which is a small organization, but they have a really great centers of excellence program 109 00:07:49,040 --> 00:07:54,720 that has a list of vetted hospitals with specialists in this disease. 110 00:07:54,720 --> 00:07:58,280 So you can go to their website, pull up the list, and then you can see which hospital 111 00:07:58,280 --> 00:08:01,800 is the closest to you that you can then consult for treatment. 112 00:08:01,800 --> 00:08:05,680 And even if one of those sites isn't necessarily close to you, it's still worth reaching out 113 00:08:05,680 --> 00:08:10,400 to them because they can at least consult and provide guidance to your local medical 114 00:08:10,400 --> 00:08:14,360 provider and guide the treatments and identifying what to do. 115 00:08:14,360 --> 00:08:19,520 So that's definitely something that I would recommend for anybody who is undergoing treatment 116 00:08:19,520 --> 00:08:20,520 for a rare disease. 117 00:08:20,520 --> 00:08:21,520 Yeah. 118 00:08:21,520 --> 00:08:26,800 And you said before all this happened, you were a wife, you were an engineer, and now 119 00:08:26,800 --> 00:08:30,100 the way you can talk about this now is like you're a doctor yourself. 120 00:08:30,100 --> 00:08:36,120 It's just evidence of the fact that being a caregiver sometimes means being a researcher, 121 00:08:36,120 --> 00:08:42,080 an advocate, someone who is going out there and actually becoming an expert themselves 122 00:08:42,080 --> 00:08:47,240 almost in something so that they can help their loved one with this as well. 123 00:08:47,240 --> 00:08:48,240 Yeah. 124 00:08:48,240 --> 00:08:52,680 I mean, it's so common, I think, for caregivers to have to become advocates, right? 125 00:08:52,680 --> 00:08:53,680 Yeah. 126 00:08:53,680 --> 00:08:57,880 You know, until this happened, I don't think I ever spent one moment thinking about a rare 127 00:08:57,880 --> 00:09:00,320 disease or what that meant. 128 00:09:00,320 --> 00:09:05,200 And honestly, with cancer, I mean, I feel a little bit ashamed to say it, but I remember 129 00:09:05,200 --> 00:09:09,920 thinking, oh, you know, the people with cancer and their families, they are so brave. 130 00:09:09,920 --> 00:09:13,280 And I never once thought like I could be one of those people. 131 00:09:13,280 --> 00:09:16,160 And I don't want to have to be brave. 132 00:09:16,160 --> 00:09:20,200 But when it happens to you, and it's a matter of life and death, right, to know what are 133 00:09:20,200 --> 00:09:25,480 the best treatments or even if it's just a what can I do to give the person I love most 134 00:09:25,480 --> 00:09:30,720 a better quality of life, there's no greater motivation to do your research and try to 135 00:09:30,720 --> 00:09:33,020 make the best decisions you can. 136 00:09:33,020 --> 00:09:37,580 Because it wasn't just having to figure out how do we treat a rare disease. 137 00:09:37,580 --> 00:09:41,640 It was also how do we navigate a very complex medical system? 138 00:09:41,640 --> 00:09:43,160 And I will say we were very fortunate. 139 00:09:43,160 --> 00:09:46,840 I really feel like we had the best treatment and we had access to the best doctors. 140 00:09:46,840 --> 00:09:51,480 I had an excellent insurance health insurance plan that covered Scott. 141 00:09:51,480 --> 00:09:58,320 I even have a lot of people who are doctors in my family, both my sisters are physicians. 142 00:09:58,320 --> 00:10:03,360 And we had a fairly extensive network of people with medical backgrounds, including both of 143 00:10:03,360 --> 00:10:05,040 Scott's parents. 144 00:10:05,040 --> 00:10:09,400 And with all of those advantages, there were times where I felt like we were maybe stuck 145 00:10:09,400 --> 00:10:13,840 in a system and I had to really kind of advocate for him or ask questions to really make sure 146 00:10:13,840 --> 00:10:19,800 that we were in fact, giving him the best treatments and quality of life that we could. 147 00:10:19,800 --> 00:10:24,880 It was far from straightforward and it really did require putting in that effort. 148 00:10:24,880 --> 00:10:27,960 But at that time, that was the single most important thing. 149 00:10:27,960 --> 00:10:30,680 The most important mission of my life was to do that for him. 150 00:10:30,680 --> 00:10:35,160 So it is funny that you mentioned it because both my sisters said, oh yeah, you communicate 151 00:10:35,160 --> 00:10:36,160 like a doctor now. 152 00:10:36,160 --> 00:10:41,960 Whenever I would talk about his symptoms and his treatments plan and his drug regimen. 153 00:10:41,960 --> 00:10:42,960 Yeah. 154 00:10:42,960 --> 00:10:48,560 I mean, you could definitely play one on TV with the level of information you now have, 155 00:10:48,560 --> 00:10:51,200 which unfortunately was, like you said, it was a necessity. 156 00:10:51,200 --> 00:10:53,560 You had to learn about it. 157 00:10:53,560 --> 00:10:58,060 It's very shocking to me because I think somewhere in your writing, you referred to the diagnosis 158 00:10:58,060 --> 00:11:03,960 as like a nuclear bomb going off because no kind of expectation of this. 159 00:11:03,960 --> 00:11:06,640 Like you said, his shoulder hurt. 160 00:11:06,640 --> 00:11:07,640 He was otherwise healthy, right? 161 00:11:07,640 --> 00:11:09,280 I mean, there was nothing else. 162 00:11:09,280 --> 00:11:13,200 We thought it was a rotator cuff injury of some sort. 163 00:11:13,200 --> 00:11:19,920 And by nature, I'm not really a particularly drama prone person. 164 00:11:19,920 --> 00:11:24,400 When we knew that there was something wrong with his shoulder, I was like, okay, well, 165 00:11:24,400 --> 00:11:26,040 let's not get too dramatic about it. 166 00:11:26,040 --> 00:11:29,200 Let's just see what the tests show and then we'll go from there. 167 00:11:29,200 --> 00:11:33,760 I didn't spend a lot of time obsessing over like, okay, what if, like what could this 168 00:11:33,760 --> 00:11:34,920 be? 169 00:11:34,920 --> 00:11:40,560 And honestly, the diagnosis, I think it shocked even his doctors with how extensive his cancer 170 00:11:40,560 --> 00:11:42,300 was by the time it was caught. 171 00:11:42,300 --> 00:11:46,480 He was healthy or seemingly healthy at that point. 172 00:11:46,480 --> 00:11:51,680 He had no symptoms other than that sore shoulder at that time, although the symptoms did come 173 00:11:51,680 --> 00:11:54,880 in the months that followed. 174 00:11:54,880 --> 00:11:57,480 He was very, very healthy when I met him. 175 00:11:57,480 --> 00:11:58,640 He was just always very strong. 176 00:11:58,640 --> 00:12:04,760 I think you knew him in high school doing cross country together. 177 00:12:04,760 --> 00:12:09,640 And so that is why that really was such a shock that our world turned upside down in 178 00:12:09,640 --> 00:12:14,160 just a day when we got the PET CT scan results back. 179 00:12:14,160 --> 00:12:18,200 It truly was shocking for all of us. 180 00:12:18,200 --> 00:12:20,160 People are so much more than a diagnosis. 181 00:12:20,160 --> 00:12:25,840 So I want to dive into who Scott was because we've talked enough about the disease. 182 00:12:25,840 --> 00:12:27,800 Let's talk about the person. 183 00:12:27,800 --> 00:12:32,220 Like I said, I knew him briefly and you and I have chatted about this, but he was a guy 184 00:12:32,220 --> 00:12:33,720 I met in high school. 185 00:12:33,720 --> 00:12:38,360 Well, for those outside the US, high school is four years and I moved right in the middle 186 00:12:38,360 --> 00:12:43,240 of high school, which is like the worst, maybe not the worst time, but a bad time to move 187 00:12:43,240 --> 00:12:46,840 because you've made all your friends in one place and then you have to move to a totally 188 00:12:46,840 --> 00:12:48,760 different state and start over. 189 00:12:48,760 --> 00:12:54,880 And I remember starting at school and Scott was one of those people who just came up probably 190 00:12:54,880 --> 00:12:57,960 at the lockers one day and was like, Hey, I'm Scott. 191 00:12:57,960 --> 00:13:00,360 Like, who are you? 192 00:13:00,360 --> 00:13:02,240 And there was no errors about him. 193 00:13:02,240 --> 00:13:04,800 It was just kind of like, Hey, you know, you're new. 194 00:13:04,800 --> 00:13:05,800 Like let's meet. 195 00:13:05,800 --> 00:13:07,840 What are you doing? 196 00:13:07,840 --> 00:13:10,140 And I think we shared some classes. 197 00:13:10,140 --> 00:13:14,880 Maybe we were in like pre calc at that time together or English class or something. 198 00:13:14,880 --> 00:13:20,880 And he was just one of those guys who like I ran cross country with him. 199 00:13:20,880 --> 00:13:21,880 Totally friendly. 200 00:13:21,880 --> 00:13:26,600 I don't know anybody who had like anything bad to say ever about Scott because you know, 201 00:13:26,600 --> 00:13:27,760 his teachers loved him. 202 00:13:27,760 --> 00:13:28,880 We loved him. 203 00:13:28,880 --> 00:13:34,360 And one story is that I was always like awkward in high school. 204 00:13:34,360 --> 00:13:36,160 I was like, Oh, don't touch me. 205 00:13:36,160 --> 00:13:40,680 Like, oh, and Scott was the type of guy who would just come up and be like, you need a 206 00:13:40,680 --> 00:13:44,840 hug, you know, and he was just like in the middle of the hallway with 10,000 people around 207 00:13:44,840 --> 00:13:46,920 just give you a big hug, like big bear hug. 208 00:13:46,920 --> 00:13:52,200 Like, oh, and I was always like, Oh my God, stop it. 209 00:13:52,200 --> 00:14:00,600 But like, care because he just had this kind of exuberant joy and, you know, wanting to 210 00:14:00,600 --> 00:14:03,720 get to know people, wanting to help people out. 211 00:14:03,720 --> 00:14:06,180 And so he was so memorable in my mind. 212 00:14:06,180 --> 00:14:09,680 And I know you met him just after high school when you guys went to tech. 213 00:14:09,680 --> 00:14:10,680 Yeah. 214 00:14:10,680 --> 00:14:14,720 And I just want to say, Erica, too, that you just sharing that story about your time together 215 00:14:14,720 --> 00:14:17,040 in high school is such a gift for me, right? 216 00:14:17,040 --> 00:14:20,120 Because he's gone now and I can't make new memories with him. 217 00:14:20,120 --> 00:14:23,840 But to hear the memories that others have shared, some of which I may not have ever 218 00:14:23,840 --> 00:14:28,600 heard before, is something that I just, I just love hearing so much. 219 00:14:28,600 --> 00:14:33,160 And what you describe, I can just so easily picture him doing that in high school. 220 00:14:33,160 --> 00:14:35,000 It was how he was when I met him. 221 00:14:35,000 --> 00:14:39,280 I feel like our times kind of like almost perfectly sort of, you know, like ended and 222 00:14:39,280 --> 00:14:41,460 started at around the same point. 223 00:14:41,460 --> 00:14:46,200 And I also want to mention the fact, Erica, that I feel like if what I remember is accurate, 224 00:14:46,200 --> 00:14:51,800 I feel like you had a hand in my meeting, Scott, because when we talked previously, 225 00:14:51,800 --> 00:14:57,120 I'm pretty sure he told me that you were the one who proofread his scholarship essay. 226 00:14:57,120 --> 00:15:01,120 Scott and I both went to Georgia Tech and we were both Georgia Tech president scholars. 227 00:15:01,120 --> 00:15:05,180 And in order to do that, you had to write an essay to apply for the scholarship. 228 00:15:05,180 --> 00:15:07,760 And what he told me was that you did a really great job. 229 00:15:07,760 --> 00:15:12,560 You kind of ripped his essay apart, but then ultimately helped him get it to a much, much 230 00:15:12,560 --> 00:15:13,560 stronger point. 231 00:15:13,560 --> 00:15:17,820 And I don't remember the context or why he told me this, but I vividly remember him sharing 232 00:15:17,820 --> 00:15:22,360 this with me and him saying, like, and I think that essay was the difference between me getting 233 00:15:22,360 --> 00:15:24,560 the scholarship and not. 234 00:15:24,560 --> 00:15:28,280 He said it was really like a whole lot better by the time it was submitted. 235 00:15:28,280 --> 00:15:34,000 And so the way that Scott and I met was the very first day of college at freshman orientation. 236 00:15:34,000 --> 00:15:38,940 And our class was specifically a freshman orientation class of president scholars. 237 00:15:38,940 --> 00:15:42,560 I would not necessarily have been in the same class with him otherwise. 238 00:15:42,560 --> 00:15:45,880 And you know what you described of him, it basically it was that same Scott, just imagine 239 00:15:45,880 --> 00:15:47,640 him in college. 240 00:15:47,640 --> 00:15:53,280 I was like also awkward, very shy, very introverted. 241 00:15:53,280 --> 00:15:57,720 We happened to sit at the same table the first day of freshman orientation. 242 00:15:57,720 --> 00:16:03,200 And I remember thinking, you know, this guy, he seems really smart, really witty, a little 243 00:16:03,200 --> 00:16:09,200 quirky, great sense of humor and always cracking jokes. 244 00:16:09,200 --> 00:16:14,040 And I got to know him over the course of the class because we did a class project together. 245 00:16:14,040 --> 00:16:15,360 We weren't dating at that time. 246 00:16:15,360 --> 00:16:20,680 I think for me at the time, he just registered as like a really fun, nice and maybe somewhat 247 00:16:20,680 --> 00:16:24,200 crazy guy that I enjoy talking to. 248 00:16:24,200 --> 00:16:26,720 I felt safe with as a friend. 249 00:16:26,720 --> 00:16:31,120 And I think Scott was very good about making you feel safe when you were with him. 250 00:16:31,120 --> 00:16:34,680 Just as a quick story of nerd love, budding nerd love. 251 00:16:34,680 --> 00:16:39,120 Later that year in the spring, we ran into each other at the college bookstore and I 252 00:16:39,120 --> 00:16:43,640 was about to take an intro to computing class, which required installing Turbo Pascal, which 253 00:16:43,640 --> 00:16:47,520 in those days was expensive for us poor college students. 254 00:16:47,520 --> 00:16:50,440 And when I ran into him, he said, oh, well, I have the discs. 255 00:16:50,440 --> 00:16:51,800 He was a computer science major. 256 00:16:51,800 --> 00:16:55,220 He already had taken that class and he said, oh, I'll just drop it off at your dorm room 257 00:16:55,220 --> 00:16:56,600 and I'll help you install it. 258 00:16:56,600 --> 00:17:03,000 So we scheduled a time for him to come by my dorm room and that time turned out to be 259 00:17:03,000 --> 00:17:04,840 pouring rain that evening. 260 00:17:04,840 --> 00:17:06,320 And I lived on East campus. 261 00:17:06,320 --> 00:17:12,280 He lived on West campus, which was maybe 15 minutes if you walk fast, run across campus. 262 00:17:12,280 --> 00:17:19,600 So when he showed up at my doorstep, he was completely soaking wet head to toe, except 263 00:17:19,600 --> 00:17:23,880 for his Turbo Pascal discs, which he had wrapped up in his pullover. 264 00:17:23,880 --> 00:17:25,400 So he came into my dorm room. 265 00:17:25,400 --> 00:17:30,360 He stayed maybe five minutes, like installed the Turbo Pascal on my computer. 266 00:17:30,360 --> 00:17:32,000 We just kind of chatted. 267 00:17:32,000 --> 00:17:35,360 And then at the end I said, oh, well, do you want to stay a little bit longer and wait 268 00:17:35,360 --> 00:17:36,360 out the rain? 269 00:17:36,360 --> 00:17:38,560 And he said, no, no, it's okay. 270 00:17:38,560 --> 00:17:39,560 I can get going. 271 00:17:39,560 --> 00:17:41,720 And he just left and he was just a total gentleman. 272 00:17:41,720 --> 00:17:44,640 There's really no expectation of anything in return. 273 00:17:44,640 --> 00:17:47,200 He just wanted to help me out. 274 00:17:47,200 --> 00:17:51,340 And as I said goodbye to him, I remember thinking Scott is a really nice guy. 275 00:17:51,340 --> 00:17:53,400 So that memory stuck with me. 276 00:17:53,400 --> 00:17:58,600 And then one final memory that I'll share is then the following fall sophomore year, 277 00:17:58,600 --> 00:18:05,000 I was moving in to, I was with my family moving into our dorm and I was walking toward our 278 00:18:05,000 --> 00:18:09,440 dorm building and I hear behind me, Bessie. 279 00:18:09,440 --> 00:18:11,960 And I turn around and it's Scott. 280 00:18:11,960 --> 00:18:15,000 And as you know, he's a big hugger. 281 00:18:15,000 --> 00:18:20,040 And before I could say anything, he just wrapped me up in this really big friendly bear hug. 282 00:18:20,040 --> 00:18:23,680 But for my traditional Chinese parents, this was borderline scandalous. 283 00:18:23,680 --> 00:18:29,280 Even though it was a friendly hug, the fact that a boy was hugging me was shocking to 284 00:18:29,280 --> 00:18:30,280 them. 285 00:18:30,280 --> 00:18:33,160 So I remember my dad looking away and my mom staring. 286 00:18:33,160 --> 00:18:36,160 And then afterwards I told them, look, he's just a friend. 287 00:18:36,160 --> 00:18:37,160 It didn't mean anything. 288 00:18:37,160 --> 00:18:38,600 Don't worry about it. 289 00:18:38,600 --> 00:18:42,220 But that sophomore year, we actually happened to be in another class together. 290 00:18:42,220 --> 00:18:45,000 And because we also happened to be living in the same dorm room, we just ran into each 291 00:18:45,000 --> 00:18:46,440 other a lot more. 292 00:18:46,440 --> 00:18:50,040 And that was the year that we started dating. 293 00:18:50,040 --> 00:18:52,400 One last thing I just want to share to one other memory. 294 00:18:52,400 --> 00:18:55,440 First of all, thank you so much for giving me this opportunity because I really wanted 295 00:18:55,440 --> 00:19:00,320 to share just how special Scott was, not just to me, but for the people around him. 296 00:19:00,320 --> 00:19:04,000 But what you described about him sort of identifying the people who might need a friend or just 297 00:19:04,000 --> 00:19:10,640 a little bit of extra care and attention, that 100% transferred to when he became a 298 00:19:10,640 --> 00:19:11,640 teacher. 299 00:19:11,640 --> 00:19:14,760 So later in his life, he had a career transition. 300 00:19:14,760 --> 00:19:16,520 He was formerly a video game developer. 301 00:19:16,520 --> 00:19:20,160 He always loved playing with and developing video games. 302 00:19:20,160 --> 00:19:25,320 But for the last three years of his career, he made the decision to transition to becoming 303 00:19:25,320 --> 00:19:29,320 a high school computer science teacher, which was incredibly daunting. 304 00:19:29,320 --> 00:19:34,680 Anybody who does teaching knows it's such a daunting and challenging profession. 305 00:19:34,680 --> 00:19:37,760 Every day was, am I going to have my material ready yet? 306 00:19:37,760 --> 00:19:40,360 And I think if he had had the time to build it up, I think he would have gotten to a point 307 00:19:40,360 --> 00:19:44,560 where it was not quite as stressful as it was in those first three years. 308 00:19:44,560 --> 00:19:49,460 And he told me that one of his greatest regrets was that he didn't have more time to reach 309 00:19:49,460 --> 00:19:51,600 out and impact more students. 310 00:19:51,600 --> 00:19:54,360 But I told him, you've definitely made an impact on your students. 311 00:19:54,360 --> 00:19:59,200 And that was 100% the case in seeing how he interacted with the students, to see the ones 312 00:19:59,200 --> 00:20:02,920 who visited him while he was in the hospital, from all the messages that I got from his 313 00:20:02,920 --> 00:20:05,400 students at his memorial service. 314 00:20:05,400 --> 00:20:11,080 It truly was just so touching, but at the same time, not at all surprising to see the 315 00:20:11,080 --> 00:20:14,200 extent, even that short time, the impact that he had. 316 00:20:14,200 --> 00:20:18,440 I think he was a great teacher, not just in the material that he gave, but he definitely 317 00:20:18,440 --> 00:20:21,040 made his students know that he cared for them. 318 00:20:21,040 --> 00:20:25,720 I think at that age, it's just a really important time to know that somebody does care for you. 319 00:20:25,720 --> 00:20:29,280 So that's something, the last thing that I want to share about Scott and the kind of 320 00:20:29,280 --> 00:20:30,280 person he was. 321 00:20:30,280 --> 00:20:31,280 Yeah. 322 00:20:31,280 --> 00:20:33,120 And I mean, we could go on. 323 00:20:33,120 --> 00:20:37,640 I'm sure if we brought more people on this podcast, everyone would have a story. 324 00:20:37,640 --> 00:20:38,720 Oh, totally. 325 00:20:38,720 --> 00:20:43,880 It's rare to meet someone who just gives and like you said, kind of has like this radar 326 00:20:43,880 --> 00:20:50,440 for who needs some extra support and then goes out and finds them and provides that 327 00:20:50,440 --> 00:20:51,440 extra support. 328 00:20:51,440 --> 00:20:56,760 And even in high school, I remember he was one of this group of guys who were, like you 329 00:20:56,760 --> 00:21:01,760 said, in the most affectionate way, total nerds, like awesome nerds. 330 00:21:01,760 --> 00:21:06,320 And they ran sports like cross country, but they also were like obsessed with video games. 331 00:21:06,320 --> 00:21:12,320 And I remember him talking about video games all the time and like designing them and how 332 00:21:12,320 --> 00:21:15,040 you could create all these worlds and everything. 333 00:21:15,040 --> 00:21:19,440 And it's not at all shocking, I guess, to those of us who knew him that he eventually 334 00:21:19,440 --> 00:21:24,480 went into teaching because it kind of, it just combines so many of those passions. 335 00:21:24,480 --> 00:21:25,640 Absolutely. 336 00:21:25,640 --> 00:21:29,560 He always had such a curiosity for learning. 337 00:21:29,560 --> 00:21:33,840 We traveled the world together and he just always just enjoyed learning about other cultures 338 00:21:33,840 --> 00:21:34,840 so much. 339 00:21:34,840 --> 00:21:40,880 So I think just combining his natural curiosity and his joy from working with young people 340 00:21:40,880 --> 00:21:43,920 when he was trying to decide, okay, you know, what should I be doing for my career? 341 00:21:43,920 --> 00:21:46,080 I really think he would be a great teacher. 342 00:21:46,080 --> 00:21:48,040 He just seemed to have this natural gift for it. 343 00:21:48,040 --> 00:21:50,200 And that indeed turned out to be the case. 344 00:21:50,200 --> 00:21:55,340 And just seeing the impact that he had, he in particular really connected with international 345 00:21:55,340 --> 00:21:56,340 students. 346 00:21:56,340 --> 00:21:59,680 And I think now looking back on it, I think it is because of what you just said that I 347 00:21:59,680 --> 00:22:03,280 think he sensed that maybe the international students, the ones who are away from home, 348 00:22:03,280 --> 00:22:06,880 from their families, just needed that extra bit of support and care. 349 00:22:06,880 --> 00:22:08,560 And he just gravitated toward them. 350 00:22:08,560 --> 00:22:13,200 So those were the ones that I actually got to know the best and the ones that I saw visit 351 00:22:13,200 --> 00:22:16,000 him in those last days in the hospital. 352 00:22:16,000 --> 00:22:18,680 To me, it actually meant a lot that they came because I think when you're a high school 353 00:22:18,680 --> 00:22:24,440 student, going to see your teacher who's dying from cancer in a hospital is probably not 354 00:22:24,440 --> 00:22:28,340 a fun, happy thing that you might choose to do. 355 00:22:28,340 --> 00:22:32,680 So it was deeply touching to see them come and see him. 356 00:22:32,680 --> 00:22:38,000 And then watching him with the students and seeing their dynamic firsthand was also deeply 357 00:22:38,000 --> 00:22:39,000 moving. 358 00:22:39,000 --> 00:22:44,360 He ended up teaching them even from his hospital bed, not computer science, but I saw him give 359 00:22:44,360 --> 00:22:47,800 sort of his final lessons on life to both of them. 360 00:22:47,800 --> 00:22:50,720 One in particular was extremely proficient in robotics. 361 00:22:50,720 --> 00:22:54,720 Perhaps you might say more proficient robotics than people, which I think might be true for 362 00:22:54,720 --> 00:22:57,040 many of us engineering nerds. 363 00:22:57,040 --> 00:23:02,720 And Scott's advice to him is, even though people are buggy, you should still open yourself 364 00:23:02,720 --> 00:23:04,520 up to get to know them. 365 00:23:04,520 --> 00:23:09,600 And even if you don't understand them sometimes or why they behave in certain ways, I think 366 00:23:09,600 --> 00:23:14,320 that you have a lot to give and you can really benefit from getting to know people. 367 00:23:14,320 --> 00:23:19,800 I think the other student shared a lot with Scott in that they both loved people to the 368 00:23:19,800 --> 00:23:26,160 point where sometimes they might be more easily hurt by the world if they felt a sense of 369 00:23:26,160 --> 00:23:32,320 either rejection or just not a sense of connection that they were quite hoping with somebody. 370 00:23:32,320 --> 00:23:37,160 I think he recognized that in this student and his advice to him was, don't be afraid 371 00:23:37,160 --> 00:23:38,640 to go out and love people. 372 00:23:38,640 --> 00:23:43,400 Even if you get hurt, it's still worthwhile to open your heart to them and express those 373 00:23:43,400 --> 00:23:46,880 feelings and emotions and be open to that. 374 00:23:46,880 --> 00:23:51,360 And so for me to see him connect with his students in that way, and even in those last 375 00:23:51,360 --> 00:23:59,120 days, choosing something to impart to them was just incredibly special and just honestly 376 00:23:59,120 --> 00:24:01,360 an honor to witness. 377 00:24:01,360 --> 00:24:07,760 I think you just brought up something that both for your description of how Scott was 378 00:24:07,760 --> 00:24:15,200 interacting with his students when he was towards the end and also how you've shared 379 00:24:15,200 --> 00:24:17,560 so much of your own journey and everything. 380 00:24:17,560 --> 00:24:25,200 And that is talking about loss is a really hard thing sometimes because even the most 381 00:24:25,200 --> 00:24:30,680 well-intentioned friends or family members, if they know you're going through something, 382 00:24:30,680 --> 00:24:32,400 sometimes they just don't know what to say. 383 00:24:32,400 --> 00:24:37,800 And they're like, I wish I could help you, but I really don't know even how to help you. 384 00:24:37,800 --> 00:24:42,960 And so sometimes they react in a way where they just kind of avoid. 385 00:24:42,960 --> 00:24:45,800 And then you get the impression that, oh, it's a error or something. 386 00:24:45,800 --> 00:24:49,680 And there's so much room for misunderstanding when we're talking about loss. 387 00:24:49,680 --> 00:24:55,240 But in many ways, it can actually be such a beautiful conversation in many ways because 388 00:24:55,240 --> 00:24:59,040 you kind of think about what's really important in life. 389 00:24:59,040 --> 00:25:03,760 So how did Scott, you're talking about how he interacted with his students, but how did 390 00:25:03,760 --> 00:25:06,600 he react to the diagnosis? 391 00:25:06,600 --> 00:25:07,920 Was he stoic about it? 392 00:25:07,920 --> 00:25:10,200 Was he kind of upset about it? 393 00:25:10,200 --> 00:25:14,740 I think initially we both were shocked by it. 394 00:25:14,740 --> 00:25:19,640 And I think initially Scott handled the news fairly stoically. 395 00:25:19,640 --> 00:25:25,960 I would say the first time I really saw him seem scared was when we learned that there 396 00:25:25,960 --> 00:25:27,640 was a hereditary component to it. 397 00:25:27,640 --> 00:25:29,720 So his family also had to undergo genetic testing. 398 00:25:29,720 --> 00:25:33,320 And thankfully everybody else tested negative for the mutation. 399 00:25:33,320 --> 00:25:37,080 Then I think the second point that was really difficult was when we learned that his initial 400 00:25:37,080 --> 00:25:41,800 diagnosis was wrong and that he in fact had somehow an even rarer cancer. 401 00:25:41,800 --> 00:25:45,520 The first cancer he was diagnosed with is considered a rare cancer. 402 00:25:45,520 --> 00:25:48,920 His actual cancer ended up being ultra rare. 403 00:25:48,920 --> 00:25:52,400 And then I think going from a, okay, we had a plan in place. 404 00:25:52,400 --> 00:25:55,720 We're going to go this route to, oh, well, that plan is out the window now. 405 00:25:55,720 --> 00:25:59,320 And we're not sure what the new plan will be because so little is known. 406 00:25:59,320 --> 00:26:01,400 I think that made it very difficult. 407 00:26:01,400 --> 00:26:07,740 The third thing that I think we both struggled to deal with is I think we were actually both 408 00:26:07,740 --> 00:26:12,760 relatively stoic about what this meant for us, for ourselves, but we both seemed to feel 409 00:26:12,760 --> 00:26:19,440 a sense of outrage for the other in terms of what it meant for what lay ahead. 410 00:26:19,440 --> 00:26:24,680 I remember Scott turning to me after the diagnosis and saying, you don't deserve this. 411 00:26:24,680 --> 00:26:27,360 Meaning that losing my partner early in life. 412 00:26:27,360 --> 00:26:30,040 And I told him, you don't deserve this either. 413 00:26:30,040 --> 00:26:32,440 I never heard him say, why me? 414 00:26:32,440 --> 00:26:38,640 But I did see him worry a lot about what would happen to me after he was gone. 415 00:26:38,640 --> 00:26:41,600 And conversely, I really didn't have a lot of time to think about what was happening 416 00:26:41,600 --> 00:26:48,040 to me because I was so focused on him, either getting him the right medical treatment or 417 00:26:48,040 --> 00:26:52,920 being present with him and just making the most of every moment that I could with him 418 00:26:52,920 --> 00:26:54,360 while I could. 419 00:26:54,360 --> 00:27:00,400 So I would say that it was definitely a very difficult time. 420 00:27:00,400 --> 00:27:07,840 One thing that we did have that was a great help to us is my supervisor at the time who 421 00:27:07,840 --> 00:27:10,040 unfortunately has since passed away. 422 00:27:10,040 --> 00:27:14,840 He actually did have the first rare cancer that Scott was originally thought to have, 423 00:27:14,840 --> 00:27:16,860 the pancreatic neuroendocrine tumor. 424 00:27:16,860 --> 00:27:20,960 And so he was at least familiar with that family of cancers and some of the related 425 00:27:20,960 --> 00:27:21,960 treatments. 426 00:27:21,960 --> 00:27:27,000 So we felt a little bit less alone knowing my supervisor, John, who had this. 427 00:27:27,000 --> 00:27:31,240 He called Scott his net brother, net standing for neuroendocrine tumor, which is this family 428 00:27:31,240 --> 00:27:32,240 of cancers. 429 00:27:32,240 --> 00:27:37,960 And in fact, John was the only person that Scott ever met that had a cancer, even in 430 00:27:37,960 --> 00:27:40,880 the same family of cancers that he had. 431 00:27:40,880 --> 00:27:44,480 He never met somebody in person with a paraganglioma in his life. 432 00:27:44,480 --> 00:27:48,700 I only met folks afterwards through my involvement with the Fiopara Alliance. 433 00:27:48,700 --> 00:27:52,960 And so another thing that I think patients and caregivers with rare diseases struggle 434 00:27:52,960 --> 00:27:59,640 with is that sense of isolation and loneliness, because there is just not as large of a community 435 00:27:59,640 --> 00:28:02,360 that you can lean on in terms of, OK, well, how did these treatments go? 436 00:28:02,360 --> 00:28:03,360 What were the side effects like? 437 00:28:03,360 --> 00:28:06,400 How did you handle X, Y, or Z? 438 00:28:06,400 --> 00:28:12,040 It is an overwhelmingly isolating experience, not just in the processing of the loss, which 439 00:28:12,040 --> 00:28:17,400 you so accurately describe as it can be something that is socially isolating, but literally 440 00:28:17,400 --> 00:28:22,160 even the people who are going through that particular disease and those symptoms, it's 441 00:28:22,160 --> 00:28:25,520 very difficult to find somebody in person or even online. 442 00:28:25,520 --> 00:28:27,200 There weren't even that many people online that he found. 443 00:28:27,200 --> 00:28:31,520 I think he did find one person online that he communicated with that helped. 444 00:28:31,520 --> 00:28:36,560 But that was truly something that made it all the more difficult, is just not having 445 00:28:36,560 --> 00:28:42,160 as large of a community to rely on to talk to, which is why these organizations, I think, 446 00:28:42,160 --> 00:28:46,880 are so critical for supporting patients and caregivers with rare cancer. 447 00:28:46,880 --> 00:28:53,720 I really think that, back to your question, Scott really seemed to be more concerned with 448 00:28:53,720 --> 00:28:56,680 my well-being more than anything else. 449 00:28:56,680 --> 00:29:01,720 And in fact, he was the one who, observing my coping with it, told me I really think 450 00:29:01,720 --> 00:29:06,120 he needed to think about getting a grief counselor, which of course was the exact right advice 451 00:29:06,120 --> 00:29:07,120 to give. 452 00:29:07,120 --> 00:29:09,320 And I did find one at his urging. 453 00:29:09,320 --> 00:29:14,200 So I think he was very much worried about the impact to his family, and we love very 454 00:29:14,200 --> 00:29:16,080 much to me. 455 00:29:16,080 --> 00:29:20,920 I think he regretted not having a longer teaching career and wished he could have had more time 456 00:29:20,920 --> 00:29:22,200 with his students. 457 00:29:22,200 --> 00:29:26,120 But at the same time, he told me that he had no regrets with how he had lived his life. 458 00:29:26,120 --> 00:29:30,440 And actually, I feel the same as well in terms of the years that we had together. 459 00:29:30,440 --> 00:29:35,560 So we were married 19 years and together a total of 26 years. 460 00:29:35,560 --> 00:29:40,240 And honestly, if I were to look back and think about, if we had known from the beginning 461 00:29:40,240 --> 00:29:43,580 that that was the amount of time that we would have together, I don't know a big picture 462 00:29:43,580 --> 00:29:47,880 that we would have changed anything about how we spent that time together. 463 00:29:47,880 --> 00:29:49,720 Not to say it was all easy. 464 00:29:49,720 --> 00:29:55,000 We had a lot of hurdles, a lot of other health-related hurdles along the way and challenges, but 465 00:29:55,000 --> 00:29:56,400 we just overcame them all. 466 00:29:56,400 --> 00:30:00,740 And we just became stronger as a team with everything that we overcame, which is why 467 00:30:00,740 --> 00:30:03,160 that final diagnosis was such a shock to me. 468 00:30:03,160 --> 00:30:07,260 I had reached a point where I felt, as long as I have Scott, we can do anything together. 469 00:30:07,260 --> 00:30:08,480 We can overcome anything together. 470 00:30:08,480 --> 00:30:12,800 So the prospect of losing him was especially difficult for me. 471 00:30:12,800 --> 00:30:18,200 I think he sensed that and that was the thing that I think worried him a lot. 472 00:30:18,200 --> 00:30:19,200 Yeah. 473 00:30:19,200 --> 00:30:20,200 Yeah. 474 00:30:20,200 --> 00:30:24,680 And I mean, obviously he had a lot of support from family and friends and everything after 475 00:30:24,680 --> 00:30:26,080 his diagnosis. 476 00:30:26,080 --> 00:30:32,440 And through the around 14 months, I think that he was able to get treatment and hold 477 00:30:32,440 --> 00:30:37,040 on before it finally took him from us. 478 00:30:37,040 --> 00:30:39,480 And you're his primary caregiver. 479 00:30:39,480 --> 00:30:43,960 You're his wife, but you're also, like you said, advocating for him, doing research, 480 00:30:43,960 --> 00:30:49,360 taking care of him on a daily basis, I imagine, as well as he got weaker or needed more kind 481 00:30:49,360 --> 00:30:53,440 of interventions to remain vital and everything. 482 00:30:53,440 --> 00:31:00,920 And for you, some of your writing is just so touching in that you talked a little bit 483 00:31:00,920 --> 00:31:01,920 about... 484 00:31:01,920 --> 00:31:06,400 I mean, you mainly started writing after he had passed, at least on what I saw on Facebook, 485 00:31:06,400 --> 00:31:11,640 but you kind of alluded to you thinking about things like the good old days. 486 00:31:11,640 --> 00:31:16,200 You don't realize the good old days have passed until they're gone. 487 00:31:16,200 --> 00:31:21,240 Or you don't realize something is like, oh, that's the last time I ever went to that park 488 00:31:21,240 --> 00:31:24,760 until it's already the last time I've passed. 489 00:31:24,760 --> 00:31:30,480 And I'm picking up something about being present and having no regrets and everything. 490 00:31:30,480 --> 00:31:34,240 That even through your caregiving, was that your primary motivation just to be present 491 00:31:34,240 --> 00:31:36,480 and experience all that you could? 492 00:31:36,480 --> 00:31:41,960 So during the caregiving itself, and you're correct, I didn't start writing until after 493 00:31:41,960 --> 00:31:43,480 Scott was gone. 494 00:31:43,480 --> 00:31:49,840 So in the aftermath of Scott's diagnosis came kind of like a torrent of medical appointments, 495 00:31:49,840 --> 00:31:52,720 decisions to be made, procedures and so forth. 496 00:31:52,720 --> 00:31:57,560 And so the 14 months that followed, I never really had a chance to kind of reflect on 497 00:31:57,560 --> 00:31:58,560 what is happening. 498 00:31:58,560 --> 00:32:02,360 Like, it just emotionally just sort of processed what was happening. 499 00:32:02,360 --> 00:32:08,520 It was all either take care of Scott or be the most present I can for Scott and spend 500 00:32:08,520 --> 00:32:11,920 this time with him and make the most of these days. 501 00:32:11,920 --> 00:32:15,880 Because while it was a terminal diagnosis and we knew that his time was limited, I do 502 00:32:15,880 --> 00:32:19,040 want to say that that does not necessarily mean that every moment from then on is one 503 00:32:19,040 --> 00:32:20,320 of sadness or pain. 504 00:32:20,320 --> 00:32:23,600 That there were moments of joy in terms of being present. 505 00:32:23,600 --> 00:32:28,540 And my supervisor, John, gave us, I think, really good advice, which is not to let this 506 00:32:28,540 --> 00:32:31,760 diagnosis rob us of what was good in our lives. 507 00:32:31,760 --> 00:32:33,920 He told me that very early on in the process. 508 00:32:33,920 --> 00:32:38,980 And that was something that I reminded myself of often. 509 00:32:38,980 --> 00:32:43,640 Because if I were to dwell on it, then I would basically remove any chance I would have of 510 00:32:43,640 --> 00:32:45,960 having a peaceful, happy moment with Scott. 511 00:32:45,960 --> 00:32:50,020 And we did have those as difficult as it might sound. 512 00:32:50,020 --> 00:32:53,800 And people would ask me, because at the time I had a full time job and I was doing all 513 00:32:53,800 --> 00:32:55,440 this caregiving. 514 00:32:55,440 --> 00:32:57,880 And people would ask me, how are you doing this? 515 00:32:57,880 --> 00:33:00,260 And at the time I would tell them, I honestly don't know. 516 00:33:00,260 --> 00:33:02,720 I just know that I have to, and I will make it work. 517 00:33:02,720 --> 00:33:05,320 I will do whatever I have to to make this work. 518 00:33:05,320 --> 00:33:09,480 To me, it felt analogous to my house burning down. 519 00:33:09,480 --> 00:33:13,800 And me trying to put out the flames or contain the fire and people standing next to me saying, 520 00:33:13,800 --> 00:33:14,800 how are you doing this? 521 00:33:14,800 --> 00:33:15,800 And I'm like, I can't talk right now. 522 00:33:15,800 --> 00:33:20,540 I just need to put out this fire or try to contain this fire as much as I can. 523 00:33:20,540 --> 00:33:25,560 And afterwards, after my house was burned down, then I can think about what just happened. 524 00:33:25,560 --> 00:33:32,400 So the emotional reckoning of all that happened really came after Scott had passed. 525 00:33:32,400 --> 00:33:37,680 And it was only at that time that my brain had a chance to think like, what just happened 526 00:33:37,680 --> 00:33:39,340 in the last 14 months? 527 00:33:39,340 --> 00:33:41,240 What just happened? 528 00:33:41,240 --> 00:33:45,200 And obviously it was a lot to process in a fairly short amount of time. 529 00:33:45,200 --> 00:33:48,800 I'd gone from thinking like, oh, you know, I'm going to grow old with Scott to, oh, he's 530 00:33:48,800 --> 00:33:51,920 sick, to, oh, he's gone. 531 00:33:51,920 --> 00:33:58,540 And opening a door to a future that I never envisioned until he was diagnosed. 532 00:33:58,540 --> 00:34:03,560 So what helped a lot during that time and what continues to help me was writing those 533 00:34:03,560 --> 00:34:04,560 thoughts down. 534 00:34:04,560 --> 00:34:06,000 It felt cathartic. 535 00:34:06,000 --> 00:34:11,960 And in a lot of way, I would say that it made me connect with a lot of people as well. 536 00:34:11,960 --> 00:34:17,080 You mentioned that people don't really know how to cope or quite respond to loss. 537 00:34:17,080 --> 00:34:20,520 And I certainly saw and experienced that. 538 00:34:20,520 --> 00:34:26,700 But at the same time, there are many people who have dealt with loss and grief or crisis. 539 00:34:26,700 --> 00:34:30,840 And in some ways, I think people connected to that. 540 00:34:30,840 --> 00:34:32,660 And because of that, that's how we met. 541 00:34:32,660 --> 00:34:37,920 And so just being able to connect with people and even if it's a different grief journey, 542 00:34:37,920 --> 00:34:43,400 just being able to connect just based on a difficult time in our lives and what we chose 543 00:34:43,400 --> 00:34:46,920 to do from that has been really meaningful. 544 00:34:46,920 --> 00:34:51,360 I think I told you in a previous conversation that the title of your podcast, Every Moment 545 00:34:51,360 --> 00:34:57,560 is a Choice, I feel like that's a theme of a lot of what I write about in the aftermath 546 00:34:57,560 --> 00:34:58,560 of his diagnosis. 547 00:34:58,560 --> 00:35:00,960 Scott and I had to make a choice. 548 00:35:00,960 --> 00:35:06,760 We knew that the odds were not good, but we chose to never stop fighting. 549 00:35:06,760 --> 00:35:09,040 We stayed hopeful and optimistic. 550 00:35:09,040 --> 00:35:14,080 We knew, okay, it's probably not likely that we have much time, but at the same time, we're 551 00:35:14,080 --> 00:35:15,080 going to do everything we can. 552 00:35:15,080 --> 00:35:18,360 We're going to get you the best treatment and who knows, maybe we'll be able to beat 553 00:35:18,360 --> 00:35:19,620 the odds. 554 00:35:19,620 --> 00:35:23,360 So we chose to keep fighting, to never give up. 555 00:35:23,360 --> 00:35:28,200 We also chose to be open with each other about our fears. 556 00:35:28,200 --> 00:35:34,000 And we had some pretty honest conversations with each other about it. 557 00:35:34,000 --> 00:35:37,720 And after Scott passed, I had to make a choice as well. 558 00:35:37,720 --> 00:35:44,560 I had to choose to decide, do I feel like this life after Scott has meaning? 559 00:35:44,560 --> 00:35:47,320 And for a while, I honestly wasn't sure. 560 00:35:47,320 --> 00:35:51,680 While my identity as his wife was not my only identity, it was certainly a very important 561 00:35:51,680 --> 00:35:53,520 part of who I was. 562 00:35:53,520 --> 00:35:59,320 And that no longer being the case made me grapple with, okay, well, what is my new identity 563 00:35:59,320 --> 00:36:02,440 and what will give me a sense of meaning and fulfillment? 564 00:36:02,440 --> 00:36:05,680 Since then, it's a thing that I have been working on. 565 00:36:05,680 --> 00:36:09,280 I'm part of a weekly widow support group. 566 00:36:09,280 --> 00:36:15,400 And in that support group, we talk a lot about living with intentionality because we're all 567 00:36:15,400 --> 00:36:21,680 facing this fairly critical point in our lives of deciding what is it, now that we've lost 568 00:36:21,680 --> 00:36:25,560 our partners, our spouses, what is it about our lives that will give us meaning? 569 00:36:25,560 --> 00:36:32,060 And we all have different answers to that, but we all must find that for ourselves. 570 00:36:32,060 --> 00:36:35,360 So for me, it's been spending time with my family. 571 00:36:35,360 --> 00:36:39,960 I'm really grateful to have a wonderful job and coworkers. 572 00:36:39,960 --> 00:36:42,960 And so rediscovering my love of travel have all helped. 573 00:36:42,960 --> 00:36:44,600 And of course, writing as well. 574 00:36:44,600 --> 00:36:49,200 But I would also say every moment is a choice is true even before the diagnosis. 575 00:36:49,200 --> 00:36:50,480 It's true for all of us, right? 576 00:36:50,480 --> 00:36:53,920 We shouldn't need a crisis to decide that every moment is a choice. 577 00:36:53,920 --> 00:37:00,460 We should be living our lives with intentionality, even if something life threatening hasn't 578 00:37:00,460 --> 00:37:01,800 occurred to us. 579 00:37:01,800 --> 00:37:04,800 It just might be that the perspective that we get from something like that kind of makes 580 00:37:04,800 --> 00:37:07,520 us pay closer attention to that. 581 00:37:07,520 --> 00:37:14,200 Yeah, which is absolutely why I started the podcast, because it usually takes something 582 00:37:14,200 --> 00:37:20,880 like a drastic for you or anyone to kind of realize that, yeah, we do have a limited time 583 00:37:20,880 --> 00:37:25,560 and we can do lots of things to kind of increase our longevity, but you really have no control. 584 00:37:25,560 --> 00:37:29,200 You could get hit by a bus tomorrow, you never know. 585 00:37:29,200 --> 00:37:33,320 And that the only thing we can control is what we do with those moments, like you just 586 00:37:33,320 --> 00:37:35,520 said, and being intentional. 587 00:37:35,520 --> 00:37:37,880 And so I'm glad that resonates with you as well. 588 00:37:37,880 --> 00:37:43,560 So you talked about being present and kind of being intentional about things. 589 00:37:43,560 --> 00:37:49,600 And I think for those who have experienced loss, because a lot of us will at some point 590 00:37:49,600 --> 00:37:54,940 in our lives experience something like this, there was something that I picked up on in 591 00:37:54,940 --> 00:38:00,800 your writing that I really loved and was really, like I mentioned at the beginning, I found 592 00:38:00,800 --> 00:38:06,200 that your writing was very uplifting for those of us who were reading it. 593 00:38:06,200 --> 00:38:12,920 And for someone in your situation, you would have had full license to just be sharing like, 594 00:38:12,920 --> 00:38:17,960 I need help, I'm struggling, I'm not doing well, I need support. 595 00:38:17,960 --> 00:38:22,420 And no one would have blamed you for expressing yourself in that way. 596 00:38:22,420 --> 00:38:27,960 And that's why I think it's so surprising or just so amazing for those of us who, and 597 00:38:27,960 --> 00:38:32,960 I'm not the only one, because I've talked to some of our friends. 598 00:38:32,960 --> 00:38:36,600 And there was something that you wrote that I really loved. 599 00:38:36,600 --> 00:38:43,960 And you talked about after your loss, sometimes the world can look really dark. 600 00:38:43,960 --> 00:38:48,880 But you said something, you said you made a lot of analogies to like gardening and planting 601 00:38:48,880 --> 00:38:51,080 things and the natural world. 602 00:38:51,080 --> 00:38:56,780 And you said, I still respond to the beauty of a sunset or a song I like. 603 00:38:56,780 --> 00:38:59,520 And sometimes the cognitive dissonance is jarring. 604 00:38:59,520 --> 00:39:02,980 How can the world hold such beauty and such horror at the same time? 605 00:39:02,980 --> 00:39:06,920 Like plants reaching for the sun, I think humans are wired to always reach for hope 606 00:39:06,920 --> 00:39:11,680 and happiness, no matter how many times they've been crushed. 607 00:39:11,680 --> 00:39:17,560 But I find that very inspirational, Bessie, that you're able to share that. 608 00:39:17,560 --> 00:39:18,560 How were you? 609 00:39:18,560 --> 00:39:21,680 Because even like, look at me, I'm falling apart right now. 610 00:39:21,680 --> 00:39:27,440 And yet you are writing this right at the time of losing your husband. 611 00:39:27,440 --> 00:39:31,880 But you seem to have it maybe like put together. 612 00:39:31,880 --> 00:39:34,040 You were able to put together your thoughts in such a way. 613 00:39:34,040 --> 00:39:35,760 How were you able to do that? 614 00:39:35,760 --> 00:39:39,640 Well, honestly, I think by the time I write it and release something, it probably sounds 615 00:39:39,640 --> 00:39:40,640 a lot more put together. 616 00:39:40,640 --> 00:39:47,280 But I guarantee you, Erica, I am not, like the grief journey is a messy harrowing one. 617 00:39:47,280 --> 00:39:54,080 And anybody who goes to my widow support groups would see that we are often a hot mess. 618 00:39:54,080 --> 00:40:00,800 But that's the point, that we have a safe space to express all the hard days, the dark 619 00:40:00,800 --> 00:40:03,160 times as well. 620 00:40:03,160 --> 00:40:07,240 I am 16 months out from my loss from Scott. 621 00:40:07,240 --> 00:40:13,320 I do feel at this point that I'm able to talk about it more in a reflective way than I was 622 00:40:13,320 --> 00:40:14,320 in the beginning. 623 00:40:14,320 --> 00:40:19,920 I certainly would have been a lot more emotional and less able to express my thoughts. 624 00:40:19,920 --> 00:40:25,520 Honestly, one of the reasons too I wrote, I started writing is Scott was, I'm a huge 625 00:40:25,520 --> 00:40:26,520 introvert. 626 00:40:26,520 --> 00:40:31,720 I do love talking to people, but Scott was like my main person that I would tell my thoughts 627 00:40:31,720 --> 00:40:32,720 to. 628 00:40:32,720 --> 00:40:37,240 And when I lost him, the person that I would have gone to for comfort, to have a person 629 00:40:37,240 --> 00:40:41,440 to comfort me and to listen to me was gone. 630 00:40:41,440 --> 00:40:47,040 And I actually felt like, well, if I say what's in my mind to a person, to an individual, 631 00:40:47,040 --> 00:40:51,760 I just feel like that's going to be a little intense for them to hear all that. 632 00:40:51,760 --> 00:40:54,920 So instead I decided, you know what, what if I just write it down? 633 00:40:54,920 --> 00:40:56,880 It helps me get my thoughts out. 634 00:40:56,880 --> 00:40:59,560 Whoever wants to read it, they can read it. 635 00:40:59,560 --> 00:41:02,080 Or if not, it's too much, they don't have to. 636 00:41:02,080 --> 00:41:05,640 But at least that way, maybe it's a little bit less intense for them or they can choose 637 00:41:05,640 --> 00:41:10,760 to receive it in a way that they can if they want to or not. 638 00:41:10,760 --> 00:41:14,280 I have gotten a lot of people tell me, oh, you seem like you've got it together. 639 00:41:14,280 --> 00:41:18,440 And I've told them, I think I just have a very strong executive function because I was 640 00:41:18,440 --> 00:41:24,760 able to get things done at work within, I would say like a month to two months after 641 00:41:24,760 --> 00:41:25,760 my loss. 642 00:41:25,760 --> 00:41:29,440 But for me, that was part of my healing journey because I really didn't, I genuinely enjoyed 643 00:41:29,440 --> 00:41:33,440 going back and being with my coworkers. 644 00:41:33,440 --> 00:41:35,760 But the nights were so difficult. 645 00:41:35,760 --> 00:41:40,740 The nights coming back home to an empty house were just really hard to cope with. 646 00:41:40,740 --> 00:41:45,680 Most often when I would do my writing is I had these thoughts that would just come out. 647 00:41:45,680 --> 00:41:51,960 And the other thing that took time for me to learn was gratitude. 648 00:41:51,960 --> 00:41:56,320 So when Scott was in the hospital, one of my colleagues reached out to me who had recently 649 00:41:56,320 --> 00:42:01,960 had a heart attack and was still undergoing the treatments for that. 650 00:42:01,960 --> 00:42:06,800 And he told me, you know, like the thing that's really helped me kind of get through the, 651 00:42:06,800 --> 00:42:13,640 like the possibility of me passing away and my family losing me has been gratitude for 652 00:42:13,640 --> 00:42:16,280 the years that I've had, the love that I've had. 653 00:42:16,280 --> 00:42:19,480 And I think it was great advice and very wise advice. 654 00:42:19,480 --> 00:42:23,480 It was not what I needed at that particular moment because at that moment, as I was on 655 00:42:23,480 --> 00:42:27,640 the precipice of losing Scott, I felt anything but gratitude. 656 00:42:27,640 --> 00:42:29,720 I was angry. 657 00:42:29,720 --> 00:42:31,680 I didn't even know what to be angry at. 658 00:42:31,680 --> 00:42:32,680 I was never angry at Scott. 659 00:42:32,680 --> 00:42:36,360 I mean, I remember even having conversations with my sisters like, is cancer evil? 660 00:42:36,360 --> 00:42:41,240 Because I don't think it is because it's not like a living thing, but it just feels evil. 661 00:42:41,240 --> 00:42:45,320 Like what's happening just feels so awful. 662 00:42:45,320 --> 00:42:52,720 And I just was just so upset and outraged that a man as good as Scott suffered. 663 00:42:52,720 --> 00:43:01,600 When you watch the person you love most realize that they will have a painful and uncertain, 664 00:43:01,600 --> 00:43:06,080 you know, an end due to cancer and seeing them grow weaker and them realizing it, it's 665 00:43:06,080 --> 00:43:10,920 something that I don't think emotionally you can ever quite recover from. 666 00:43:10,920 --> 00:43:14,720 And so I am going to carry that with me for the rest of my life. 667 00:43:14,720 --> 00:43:19,360 But at the same time, I would say that I did eventually start feeling gratitude. 668 00:43:19,360 --> 00:43:23,080 And actually the day that I started feeling it was the day that we buried him as I was 669 00:43:23,080 --> 00:43:27,800 writing in the car to his burial site and he's buried in the Shenandoah mountains. 670 00:43:27,800 --> 00:43:32,000 It's this beautiful spot kind of on the edge of the woods and a meadow overlooking the 671 00:43:32,000 --> 00:43:35,920 mountains and the Shenandoah river, the Blue Ridge mountains in the Shenandoah river. 672 00:43:35,920 --> 00:43:41,320 I started remembering all the memories that we had early days when we met each other, 673 00:43:41,320 --> 00:43:46,680 when we fell in love, so many incredible memories in the 26 years since. 674 00:43:46,680 --> 00:43:52,080 And I remember thinking I'm so grateful that we met early, met first day of college, like 675 00:43:52,080 --> 00:43:54,360 the first day of my adult life, basically. 676 00:43:54,360 --> 00:43:58,880 We had even though it was a shorter time than I wanted, we really packed it with just so 677 00:43:58,880 --> 00:44:03,560 much love and joy and warmth and fun. 678 00:44:03,560 --> 00:44:06,600 And I was so glad that he picked me to be his wife. 679 00:44:06,600 --> 00:44:09,660 And I was so glad that I got to be his caregiver, that if this had to happen, that I could be 680 00:44:09,660 --> 00:44:13,320 there to take care of him. 681 00:44:13,320 --> 00:44:16,800 So I think that sense of gratitude in a way, maybe that's a choice. 682 00:44:16,800 --> 00:44:19,560 I think maybe you have to choose to feel that as well. 683 00:44:19,560 --> 00:44:20,720 I definitely didn't get there right away. 684 00:44:20,720 --> 00:44:23,720 I had to get there in time. 685 00:44:23,720 --> 00:44:27,520 It is something that I feel more conscious of. 686 00:44:27,520 --> 00:44:31,440 I mean, like what's kind of weird is I remember going on trips with Scott and thinking, I'm 687 00:44:31,440 --> 00:44:33,120 so grateful that we're able to do this. 688 00:44:33,120 --> 00:44:37,440 So it wasn't like I didn't feel fortunate that I had these moments, way before I even 689 00:44:37,440 --> 00:44:38,720 knew that our time was short. 690 00:44:38,720 --> 00:44:42,480 I remember thinking like, I'm so glad I'm able to make this trip or do this fun experience 691 00:44:42,480 --> 00:44:44,240 or go on this adventure with Scott. 692 00:44:44,240 --> 00:44:47,560 And in some ways, maybe I just sort of assumed, oh, I'm not taking it for granted. 693 00:44:47,560 --> 00:44:48,560 Therefore I'll have it more. 694 00:44:48,560 --> 00:44:53,560 There's no lesson to be learned here for me that I already appreciated what I had. 695 00:44:53,560 --> 00:44:58,240 But then losing him was so difficult. 696 00:44:58,240 --> 00:45:03,240 But it took me time to think back and be grateful for the time that we did have. 697 00:45:03,240 --> 00:45:04,840 And that is something that I feel more now. 698 00:45:04,840 --> 00:45:09,720 And it is something that I feel more now that I spend time with my family, with my parents, 699 00:45:09,720 --> 00:45:14,840 with my sisters, with Scott's family, who have just been absolutely lovely and loving 700 00:45:14,840 --> 00:45:15,840 to me. 701 00:45:15,840 --> 00:45:19,260 They're still my family, even after he is gone. 702 00:45:19,260 --> 00:45:23,640 This past weekend, I was in Boston to visit family. 703 00:45:23,640 --> 00:45:28,520 And my sister and my dad and I all decided to walk around Walden Pond. 704 00:45:28,520 --> 00:45:33,520 It was a beautiful, warm fall day. 705 00:45:33,520 --> 00:45:37,440 And where we were staying was not that far away from Walden Pond. 706 00:45:37,440 --> 00:45:41,000 So we went and I just listened to Walden on audiobook. 707 00:45:41,000 --> 00:45:44,120 So I was kind of in this frame of mind, like, okay, I want to see where Henry David Thoreau, 708 00:45:44,120 --> 00:45:47,120 who also thought a lot about the meaning of life and wanted to get the most out of life 709 00:45:47,120 --> 00:45:48,120 and be intentional. 710 00:45:48,120 --> 00:45:50,400 I wanted to see the side of his house. 711 00:45:50,400 --> 00:45:54,320 I didn't realize it, but apparently my dad also read Walden was a huge fan of it as well. 712 00:45:54,320 --> 00:45:59,120 So we kind of spent the walk trading Thoreau tidbits of information and my sister rolling 713 00:45:59,120 --> 00:46:02,240 her eyes at what giant nerds we were. 714 00:46:02,240 --> 00:46:05,440 But the thing about that walk is my dad is 82 now. 715 00:46:05,440 --> 00:46:09,400 He's always been very gregarious, very energetic. 716 00:46:09,400 --> 00:46:12,700 He just kind of has this bounce in his walk. 717 00:46:12,700 --> 00:46:13,700 But he's 82 now. 718 00:46:13,700 --> 00:46:15,520 He is aging. 719 00:46:15,520 --> 00:46:18,800 And a few times during the walk, he had to stop to catch his breath, which is relatively 720 00:46:18,800 --> 00:46:19,800 recent. 721 00:46:19,800 --> 00:46:22,880 But at 82, that's amazing that he was able to do it. 722 00:46:22,880 --> 00:46:27,320 And so, you know, there's this kind of this bittersweet side of it where I was sad to 723 00:46:27,320 --> 00:46:29,840 see him slowing down and aging. 724 00:46:29,840 --> 00:46:32,480 But at the same time, he had such a great time on that walk. 725 00:46:32,480 --> 00:46:34,360 He loved walking in the woods. 726 00:46:34,360 --> 00:46:37,160 He loved seeing the site of Thoreau's house. 727 00:46:37,160 --> 00:46:39,640 And at the end of the walk, we all agreed like that was such a great afternoon. 728 00:46:39,640 --> 00:46:41,900 Like, what a great memory. 729 00:46:41,900 --> 00:46:44,960 And I just remember thinking, I'm just so grateful that this happened. 730 00:46:44,960 --> 00:46:48,880 It wasn't like, you know, I didn't know what would happen or how it would turn out. 731 00:46:48,880 --> 00:46:52,720 But as each of these memories happen, I just remember like, you know, I just I want to 732 00:46:52,720 --> 00:46:55,120 hold on to this because who knows? 733 00:46:55,120 --> 00:46:57,800 Who knows when the last one will be? 734 00:46:57,800 --> 00:47:00,000 So appreciate each one as it happens. 735 00:47:00,000 --> 00:47:03,360 Don't worry so much about like the future in terms of like, well, is this the last one? 736 00:47:03,360 --> 00:47:07,920 But just as it happens, just save that in your heart and remember it and just like look 737 00:47:07,920 --> 00:47:08,920 back on those. 738 00:47:08,920 --> 00:47:12,640 So that was something that happened this past weekend that I think I would have felt. 739 00:47:12,640 --> 00:47:16,740 I still would have felt gratitude even if all that happened with Scott hadn't happened. 740 00:47:16,740 --> 00:47:23,120 But for me, it was it just was extra important and moving to me and something that I think 741 00:47:23,120 --> 00:47:25,600 I'm always going to just like look back on is like, you know, that was like a really 742 00:47:25,600 --> 00:47:28,520 amazing afternoon with my dad and my sister at Walden. 743 00:47:28,520 --> 00:47:29,520 Yeah, yeah. 744 00:47:29,520 --> 00:47:31,160 That's the key, right? 745 00:47:31,160 --> 00:47:33,920 Is like is like you said, appreciating the moment. 746 00:47:33,920 --> 00:47:39,800 And I think because me being a cancer survivor of a much more common cancer and a treatable 747 00:47:39,800 --> 00:47:47,040 cancer, the shift I went through, I think led to a life where I'm I'm appreciating the 748 00:47:47,040 --> 00:47:48,040 smaller things. 749 00:47:48,040 --> 00:47:53,960 I mean, I too used to love to travel everywhere and I've explored many different places. 750 00:47:53,960 --> 00:47:58,640 And right now I can be happy taking a walk around my neighborhood. 751 00:47:58,640 --> 00:48:02,240 I'm no longer chasing like these big wild experiences. 752 00:48:02,240 --> 00:48:07,140 Once you're able to kind of appreciate either who you're with and where you are, you can 753 00:48:07,140 --> 00:48:12,200 actually make a lot out of what you have, you know, and I think that's the appreciation 754 00:48:12,200 --> 00:48:14,200 that that you gain. 755 00:48:14,200 --> 00:48:15,200 Absolutely. 756 00:48:15,200 --> 00:48:17,600 I think it's yeah, it's what gives you a sense of meaning. 757 00:48:17,600 --> 00:48:19,200 And it doesn't have to be a big thing. 758 00:48:19,200 --> 00:48:23,520 It can be it can be a little thing as well, just like small moments with your family or 759 00:48:23,520 --> 00:48:27,960 yourself in nature or whatever, whatever brings you joy. 760 00:48:27,960 --> 00:48:33,160 And in your writing, you've talked a lot about resilience and kind of your journey in the 761 00:48:33,160 --> 00:48:37,280 months and now over a year since Scott passed away. 762 00:48:37,280 --> 00:48:41,640 And it's one of the other kind of hopeful elements to your writing is that, you know, 763 00:48:41,640 --> 00:48:43,800 you are finding joy in life again. 764 00:48:43,800 --> 00:48:48,320 Like you said, you actually moved into a new house and everything. 765 00:48:48,320 --> 00:48:54,720 And and while I don't want to use the words moving on, I kind of finding joy again. 766 00:48:54,720 --> 00:48:55,720 Absolutely. 767 00:48:55,720 --> 00:48:57,720 Yeah, I think you're exactly right. 768 00:48:57,720 --> 00:49:03,320 It's not exactly moving on because I still feel like I carry Scott with me. 769 00:49:03,320 --> 00:49:06,640 I mean, he his life mattered so much. 770 00:49:06,640 --> 00:49:09,560 Not just to me, but to everyone I think he met. 771 00:49:09,560 --> 00:49:11,560 He made me a better person. 772 00:49:11,560 --> 00:49:17,520 And even though I really, really miss his physical presence, his witty jokes, but I 773 00:49:17,520 --> 00:49:20,920 mean, I feel like I can still have a conversation with him in a way, just just knowing like 774 00:49:20,920 --> 00:49:24,000 the type of person he was and the things that he would say. 775 00:49:24,000 --> 00:49:25,360 And you mentioned like, you know, with travel. 776 00:49:25,360 --> 00:49:29,800 So I went on my first big trip this past summer with my family. 777 00:49:29,800 --> 00:49:32,220 And this is the first big trip without Scott. 778 00:49:32,220 --> 00:49:36,560 So that was obviously emotionally difficult. 779 00:49:36,560 --> 00:49:42,540 And there was this one moment, especially that was hard, which is when I was in Munich 780 00:49:42,540 --> 00:49:46,160 with them and I went to the English Garden, which is kind of their version of Central 781 00:49:46,160 --> 00:49:47,160 Park. 782 00:49:47,160 --> 00:49:51,280 And they have this like kind of Greek style temple called the Monopteros, which gives 783 00:49:51,280 --> 00:49:55,320 these like views of the city and the park. 784 00:49:55,320 --> 00:49:58,640 And I decided, you know, I went, I walked around the park and then I decided I'm going 785 00:49:58,640 --> 00:49:59,640 to climb up to the Monopteros. 786 00:49:59,640 --> 00:50:03,240 Not that it was that tall, but I'm going to climb the Monopteros and get a view because 787 00:50:03,240 --> 00:50:05,040 that was the thing that Scott and I would do in all of our trips. 788 00:50:05,040 --> 00:50:08,720 We'd find a thing to climb to get a view of the city. 789 00:50:08,720 --> 00:50:14,680 In fact, on our honeymoon, he wanted us both to climb the Dome of the Duomo, which was 790 00:50:14,680 --> 00:50:16,140 a very long climb. 791 00:50:16,140 --> 00:50:17,840 And he was in way better shape than I was. 792 00:50:17,840 --> 00:50:21,880 He was just kind of bounding happily ahead while I was huffing and puffing up the stairs. 793 00:50:21,880 --> 00:50:27,400 And he ultimately got me up there by promising me gelato if I made it up to the top. 794 00:50:27,400 --> 00:50:29,880 And the view was, of course, absolutely worth it. 795 00:50:29,880 --> 00:50:35,240 So 20 years later, I was in Munich, climbed the Monopteros. 796 00:50:35,240 --> 00:50:38,920 I kind of got lost that Google Maps did not give me a great direction to get there. 797 00:50:38,920 --> 00:50:42,000 I eventually found it and I climbed it. 798 00:50:42,000 --> 00:50:44,160 And I was like, okay, I made it. 799 00:50:44,160 --> 00:50:48,520 But then immediately just filled with a sense of emptiness of, but Scott's not here. 800 00:50:48,520 --> 00:50:51,600 Like he was supposed to be with me climbing this. 801 00:50:51,600 --> 00:50:55,680 And that was the moment where I think I really, it really just kind of hit me at how much 802 00:50:55,680 --> 00:51:00,000 I missed him and how much I wished he could be with me on this trip. 803 00:51:00,000 --> 00:51:05,040 But at that same time, it was a beautiful day and I could feel the breeze blowing on 804 00:51:05,040 --> 00:51:06,280 my face and my hair. 805 00:51:06,280 --> 00:51:09,260 And I could see the sunlight across the park. 806 00:51:09,260 --> 00:51:16,920 And just from thinking, you know, this is a beautiful experience, even with the pain 807 00:51:16,920 --> 00:51:19,960 of him not being here. 808 00:51:19,960 --> 00:51:21,360 You know, and with the house that you mentioned. 809 00:51:21,360 --> 00:51:28,360 So I did buy a house about six, actually almost a year ago, but it was about six months after 810 00:51:28,360 --> 00:51:29,360 I lost Scott. 811 00:51:29,360 --> 00:51:31,720 It was way earlier than what I was expecting. 812 00:51:31,720 --> 00:51:35,920 And it was very important to me to feel that I could still feel his presence in this house. 813 00:51:35,920 --> 00:51:38,680 And I wasn't sure if that would be the case. 814 00:51:38,680 --> 00:51:42,040 And actually now I will say, like, I think this is a house that he would have liked just 815 00:51:42,040 --> 00:51:43,040 knowing him. 816 00:51:43,040 --> 00:51:47,280 I really do think that he would have loved to be in this house, but it was also really 817 00:51:47,280 --> 00:51:54,240 important for me, you know, just to feel like, you know, this in some ways, like he's here 818 00:51:54,240 --> 00:51:55,240 as well. 819 00:51:55,240 --> 00:52:02,040 And on the evening of the 11 month anniversary, and I always struggled with these month anniversaries. 820 00:52:02,040 --> 00:52:05,720 I didn't think they would be a thing, but they totally ended up being a thing where 821 00:52:05,720 --> 00:52:09,040 I would just at the around the time that he passed, it would just always just kind of 822 00:52:09,040 --> 00:52:11,280 come crashing down on me that he was gone. 823 00:52:11,280 --> 00:52:12,720 And I would never quite know what to do about it. 824 00:52:12,720 --> 00:52:17,080 I tried a whole bunch of different things each month with varying levels of success. 825 00:52:17,080 --> 00:52:21,480 But that one time, the 11 month anniversary mark, as the time approached, I just somehow 826 00:52:21,480 --> 00:52:24,440 knew exactly what I wanted to do. 827 00:52:24,440 --> 00:52:27,860 The walls were going to be painted the following day because I was getting the house painted. 828 00:52:27,860 --> 00:52:33,640 So I took a pencil and I wrote a message to Scott on a wall telling him that I will love 829 00:52:33,640 --> 00:52:35,440 him forever. 830 00:52:35,440 --> 00:52:39,240 And the intent that that would be painted over the following day and it would become 831 00:52:39,240 --> 00:52:41,600 always a part of this house. 832 00:52:41,600 --> 00:52:46,920 And I've since learned, you know, prior to losing Scott, I consider myself a fairly rational, 833 00:52:46,920 --> 00:52:52,160 logical, not super overly emotional person. 834 00:52:52,160 --> 00:52:56,000 But I've since learned that in grief, there's no shame in doing something that maybe doesn't 835 00:52:56,000 --> 00:52:57,800 quite make sense, but feels right. 836 00:52:57,800 --> 00:53:02,360 So I had learned, you know what, it doesn't matter if this might seem silly. 837 00:53:02,360 --> 00:53:06,840 That's important to me and if it gives me a little bit of peace or comfort, then that's 838 00:53:06,840 --> 00:53:08,080 what needs to happen. 839 00:53:08,080 --> 00:53:13,460 So I was just seized by that desire and I did it and the following day it was painted 840 00:53:13,460 --> 00:53:19,840 over and now it's always going to be a part of this house, that message to him. 841 00:53:19,840 --> 00:53:24,080 It's a lovely sentiment and a way of remembering someone as well. 842 00:53:24,080 --> 00:53:25,080 Yeah. 843 00:53:25,080 --> 00:53:30,480 He's always, as long as I'm alive and the people that he knew are alive, like he is 844 00:53:30,480 --> 00:53:35,840 going to be here in the sense of how he impacted us. 845 00:53:35,840 --> 00:53:40,580 My sister says I'm a much more fun person as a result of knowing, I was pretty serious 846 00:53:40,580 --> 00:53:42,580 when I met him. 847 00:53:42,580 --> 00:53:46,680 I think that she's probably not wrong, but there are things that I still think about 848 00:53:46,680 --> 00:53:52,040 that I learned from him that I think he made me into a person who could be a better friend, 849 00:53:52,040 --> 00:53:56,440 a better sister, daughter, aunt. 850 00:53:56,440 --> 00:54:00,200 And I know that he had that effect on other people in his life as well. 851 00:54:00,200 --> 00:54:08,200 So he will always be here in that way, even though I very much miss other things like 852 00:54:08,200 --> 00:54:15,080 hearing him go on about the NBA or Legend of Zelda. 853 00:54:15,080 --> 00:54:18,000 I can't believe I would one day say that I've missed that, but I really do miss hearing 854 00:54:18,000 --> 00:54:20,000 his takes on it. 855 00:54:20,000 --> 00:54:21,000 Yeah. 856 00:54:21,000 --> 00:54:26,840 And I remember you had one post that was titled Legacy and you talked a little bit about that 857 00:54:26,840 --> 00:54:35,640 and how it's possible to live on, for someone to have an impact on others around them. 858 00:54:35,640 --> 00:54:40,920 And someone is never gone because you'll see that person in all the people around them. 859 00:54:40,920 --> 00:54:47,760 What a beautiful way to leave a legacy is by teaching and impacting students as well. 860 00:54:47,760 --> 00:54:52,760 The thoughts on legacy are so touching. 861 00:54:52,760 --> 00:54:56,040 You've been thrown into this situation, right? 862 00:54:56,040 --> 00:54:59,600 Like you said, I think you mentioned last time we talked, I wish we weren't doing a 863 00:54:59,600 --> 00:55:05,500 podcast because the circumstances that brought us to this conversation, we wouldn't want 864 00:55:05,500 --> 00:55:06,500 to have happened. 865 00:55:06,500 --> 00:55:07,500 Right? 866 00:55:07,500 --> 00:55:11,120 But the way you've shared your journey through your writing and everything, you have had 867 00:55:11,120 --> 00:55:12,680 an impact on other people. 868 00:55:12,680 --> 00:55:17,520 You brought out my latent grief about other things. 869 00:55:17,520 --> 00:55:19,280 And so it does resonate with other people. 870 00:55:19,280 --> 00:55:22,960 And so thinking about your own legacy. 871 00:55:22,960 --> 00:55:27,940 That is a really great question because honestly, I think of what I realized is I've been more 872 00:55:27,940 --> 00:55:31,000 focused on ensuring Scott's legacy. 873 00:55:31,000 --> 00:55:32,000 His life mattered. 874 00:55:32,000 --> 00:55:35,920 We didn't have kids, but I still feel like he had such an impact on people. 875 00:55:35,920 --> 00:55:39,800 And I just really want to make sure that the world knows that, which is one of the reasons 876 00:55:39,800 --> 00:55:40,800 why. 877 00:55:40,800 --> 00:55:45,480 I would have never dreamt that I would be on a podcast one day. 878 00:55:45,480 --> 00:55:47,920 But when you asked me about this, I thought, you know what? 879 00:55:47,920 --> 00:55:53,180 It's really important for me to know what an incredible person Scott is in the world. 880 00:55:53,180 --> 00:56:01,660 In terms of, I guess, my legacy, I think for me it is important to be there for my family, 881 00:56:01,660 --> 00:56:04,760 for Scott's family, for my friends. 882 00:56:04,760 --> 00:56:11,680 And something that is, I think, newer for me and that I only maybe in the last six months 883 00:56:11,680 --> 00:56:19,480 started to do more of is becoming more involved in patient advocacy and rare disease advocacy. 884 00:56:19,480 --> 00:56:20,880 So it's early days. 885 00:56:20,880 --> 00:56:26,160 I don't quite yet have a clear picture of what it is I want to do. 886 00:56:26,160 --> 00:56:35,480 But I do know that there is a lot to be done for patients with rare diseases because it's 887 00:56:35,480 --> 00:56:41,320 a fairly daunting landscape in terms of what their treatment options are and just even 888 00:56:41,320 --> 00:56:45,240 the knowledge of how best to treat those diseases. 889 00:56:45,240 --> 00:56:52,080 And I think you kind of have to live through this to have that motivation and understanding 890 00:56:52,080 --> 00:56:54,320 of what the challenges are. 891 00:56:54,320 --> 00:56:58,720 And for me, it's not just about this one disease. 892 00:56:58,720 --> 00:57:03,920 Certainly it's important to me because I really identify with the folks who are going through 893 00:57:03,920 --> 00:57:04,920 this. 894 00:57:04,920 --> 00:57:10,080 I think for me, a memory that I can never quite forget is the night that Scott and I 895 00:57:10,080 --> 00:57:17,840 realized what we were up against and in some ways just feeling just a sense of abandonment, 896 00:57:17,840 --> 00:57:18,840 not by our doctors. 897 00:57:18,840 --> 00:57:23,680 Our doctors were fantastic, but just like when asked, we were given a fairly consistent 898 00:57:23,680 --> 00:57:25,440 answer of, well, here's what we know. 899 00:57:25,440 --> 00:57:31,440 None of these treatments really have great odds, but here's what we have and here's a 900 00:57:31,440 --> 00:57:33,040 plan. 901 00:57:33,040 --> 00:57:37,360 And both Scott and I kind of understood the ramifications of that and we looked at each 902 00:57:37,360 --> 00:57:38,360 other. 903 00:57:38,360 --> 00:57:44,080 I think just that sense of realization is something that I'll never forget. 904 00:57:44,080 --> 00:57:49,640 That same night, he also, he took my hands and said, no matter what happens, this, by 905 00:57:49,640 --> 00:57:52,560 this he pointed to him and myself. 906 00:57:52,560 --> 00:57:55,300 He said, this has been a tremendous success. 907 00:57:55,300 --> 00:57:57,720 And he was totally right. 908 00:57:57,720 --> 00:58:04,340 But what that night, just that sort of reckoning of what this meant, I don't want anybody to 909 00:58:04,340 --> 00:58:05,340 have to go through that. 910 00:58:05,340 --> 00:58:10,560 It is truly a horrible, horrible feeling of helplessness when you realize that you're 911 00:58:10,560 --> 00:58:14,840 up against a serious disease with very few known effective treatments. 912 00:58:14,840 --> 00:58:20,100 And while his disease is ultra rare, it's actually not that unusual to have a rare disease. 913 00:58:20,100 --> 00:58:27,120 So according to the NIH, I think just under 10% of Americans have a rare disease. 914 00:58:27,120 --> 00:58:32,440 And of all the rare diseases, a very small percentage have FDA approved treatments. 915 00:58:32,440 --> 00:58:38,080 So I think that rather than focusing on any one disease, if there are ways of helping 916 00:58:38,080 --> 00:58:43,280 rare diseases in general, and I'm hopeful that, not that I am an expert on it, I am 917 00:58:43,280 --> 00:58:49,640 hopeful that the revolution in AI technology might help accelerate the identification of 918 00:58:49,640 --> 00:58:51,840 promising treatments for clinical trial. 919 00:58:51,840 --> 00:58:54,160 And we would still have to do things like the clinical trial. 920 00:58:54,160 --> 00:58:56,000 It would still take time. 921 00:58:56,000 --> 00:59:00,320 But rather than just like a shot in the dark trying to find something, that there might 922 00:59:00,320 --> 00:59:06,080 be ways that all rare diseases could benefit from improvements in treatment and finding 923 00:59:06,080 --> 00:59:13,420 kind of maybe like precision medicine for specific types of tumors as well. 924 00:59:13,420 --> 00:59:16,480 So this is an area that I'm fairly new to. 925 00:59:16,480 --> 00:59:22,960 I don't have a biology or a medical training background, but as you noted, I do like to 926 00:59:22,960 --> 00:59:24,200 do my research. 927 00:59:24,200 --> 00:59:31,200 And so I have been involved with the FiO-PERA Alliance, the task force, because actually 928 00:59:31,200 --> 00:59:36,440 the only FDA approved treatment for FiO-PERA is actually about to cease production in the 929 00:59:36,440 --> 00:59:40,680 first quarter of 2024 because there are so few patients that take it. 930 00:59:40,680 --> 00:59:46,200 And thinking back just to that night, if Scott and I had had that realization and also on 931 00:59:46,200 --> 00:59:51,880 top of that, we're told, oh, and we have this FDA approved treatment, but now it's no longer 932 00:59:51,880 --> 00:59:54,360 an option because they're not going to make it anymore. 933 00:59:54,360 --> 00:59:56,480 It would have been devastating. 934 00:59:56,480 --> 00:59:59,280 Now as it turned out, it improved his quality of life. 935 00:59:59,280 --> 01:00:04,520 I think it might have slightly increased his life by a few months, but ultimately his disease 936 01:00:04,520 --> 01:00:08,000 was just so advanced by the time they found it. 937 01:00:08,000 --> 01:00:12,280 But knowing that he had that as an option and that we tried it, even if it didn't end 938 01:00:12,280 --> 01:00:17,920 up working out, was vastly preferable to him not having that as an option and then always 939 01:00:17,920 --> 01:00:20,700 wondering could that have made the difference for him. 940 01:00:20,700 --> 01:00:26,080 So I do feel that the first six months I was more just like, I just need to survive. 941 01:00:26,080 --> 01:00:27,280 I just need to make it to the next day. 942 01:00:27,280 --> 01:00:30,400 I can't really think outside myself right now. 943 01:00:30,400 --> 01:00:35,880 And eventually I turned a corner where I decided, okay, I think part of this healing now is 944 01:00:35,880 --> 01:00:38,500 going to involve doing something for others. 945 01:00:38,500 --> 01:00:44,080 So for me, it has been figuring out what are some ways that I can advocate for patients, 946 01:00:44,080 --> 01:00:46,080 especially patients with rare cancers. 947 01:00:46,080 --> 01:00:49,720 And I've also been involved with this widow support group that I've mentioned a few times. 948 01:00:49,720 --> 01:00:55,840 I've since become a facilitator for that and providing that space because my group in particular 949 01:00:55,840 --> 01:00:58,040 is for young widows. 950 01:00:58,040 --> 01:01:03,200 And thankfully for the general population, there are very few of us. 951 01:01:03,200 --> 01:01:08,440 But unfortunately for those of us who are young widows, widowers, it's also very hard 952 01:01:08,440 --> 01:01:09,440 to find. 953 01:01:09,440 --> 01:01:13,080 And when I say young, I mean the younger than 60. 954 01:01:13,080 --> 01:01:15,360 It's very hard to find somebody in person. 955 01:01:15,360 --> 01:01:20,300 I think it might've been, it was definitely months. 956 01:01:20,300 --> 01:01:25,800 It was a long time before I met another widow slash widower under 60, like in person after 957 01:01:25,800 --> 01:01:26,800 I lost Scott. 958 01:01:26,800 --> 01:01:30,560 And that also was an isolating experience as well. 959 01:01:30,560 --> 01:01:35,520 I was surrounded with many loving and caring people. 960 01:01:35,520 --> 01:01:40,320 But at the same time, I did feel a little bit like an alien in a very kind world, but 961 01:01:40,320 --> 01:01:46,000 somebody who just very few people could quite understand what this experience meant. 962 01:01:46,000 --> 01:01:50,640 So being able to connect with others, I think, and now I'm in a place where if I can help 963 01:01:50,640 --> 01:01:55,080 somebody going through that, I feel like that would, I don't know if I think of that as 964 01:01:55,080 --> 01:02:00,000 a legacy, but it makes me, you know, it makes me happy in terms of helping somebody. 965 01:02:00,000 --> 01:02:04,200 Just remembering how I felt and being able to make somebody else going through that feel 966 01:02:04,200 --> 01:02:06,280 a little bit less alone. 967 01:02:06,280 --> 01:02:08,240 That is something that gives me a sense of meaning. 968 01:02:08,240 --> 01:02:10,960 That's something I do want to continue doing. 969 01:02:10,960 --> 01:02:11,960 Yeah. 970 01:02:11,960 --> 01:02:12,960 Yeah. 971 01:02:12,960 --> 01:02:17,560 It's so beautiful because you've taken something that is tragic and wanting to help other people 972 01:02:17,560 --> 01:02:24,120 in this similar situation deal with it is something that a gift that you can give to 973 01:02:24,120 --> 01:02:25,440 other people as well. 974 01:02:25,440 --> 01:02:33,800 And I mean, you did talk a lot about the situation with everything in healthcare is around money 975 01:02:33,800 --> 01:02:39,320 at the end of the day and pharma and what gets funded and what doesn't get funded. 976 01:02:39,320 --> 01:02:44,880 And there's so many different groups looking at how to get more funding. 977 01:02:44,880 --> 01:02:50,800 And I think that anything to do with rare diseases, I mean, there's a rare disease day, 978 01:02:50,800 --> 01:02:51,800 isn't there? 979 01:02:51,800 --> 01:02:52,800 Yes. 980 01:02:52,800 --> 01:02:56,440 It draws some attention, but it's one of those things that because there are so few people 981 01:02:56,440 --> 01:03:02,480 impacted by it, it's harder to get visibility for it and whatever you can do. 982 01:03:02,480 --> 01:03:08,000 I mean, certainly, just your personal experience, your writing is something that people can 983 01:03:08,000 --> 01:03:12,440 resonate with and whatever else you do will help, I'm sure. 984 01:03:12,440 --> 01:03:13,440 So that's very worthy. 985 01:03:13,440 --> 01:03:14,440 I'm glad you're doing that. 986 01:03:14,440 --> 01:03:17,200 I mean, I think that would be an amazing legacy actually. 987 01:03:17,200 --> 01:03:18,200 Yeah. 988 01:03:18,200 --> 01:03:21,920 It's something honestly that helps me as well. 989 01:03:21,920 --> 01:03:25,440 Having the experience of being a caregiver for somebody with a rare disease and then 990 01:03:25,440 --> 01:03:32,220 being a young widow, both of those can be very isolating experiences. 991 01:03:32,220 --> 01:03:39,840 So helping, feeling like I can perhaps help somebody who is going through that to me honestly 992 01:03:39,840 --> 01:03:41,960 helps my own grief journey as well. 993 01:03:41,960 --> 01:03:45,920 Just the thought of somebody going through this, it's honestly, it's unbearable. 994 01:03:45,920 --> 01:03:48,080 Nobody should have to go through this. 995 01:03:48,080 --> 01:03:54,120 So seeing ways to help others through this and honestly for the rare disease aspect of 996 01:03:54,120 --> 01:03:56,600 it as well, I am able to do it. 997 01:03:56,600 --> 01:04:01,120 When I was a caregiver, I would not have had the time to do any of this advocacy just because 998 01:04:01,120 --> 01:04:03,760 all my time was on Scott. 999 01:04:03,760 --> 01:04:07,520 So the people who are fighting this, they need 100% of their energy toward fighting 1000 01:04:07,520 --> 01:04:11,760 the disease and staying alive and maintaining their quality of life. 1001 01:04:11,760 --> 01:04:12,760 The same for their caregivers. 1002 01:04:12,760 --> 01:04:19,760 They're not going to have time to be fighting a medical system or profitability or those 1003 01:04:19,760 --> 01:04:20,760 sorts of considerations. 1004 01:04:20,760 --> 01:04:26,640 I no longer am a caregiver now, but I was impacted by that experience and I'm now at 1005 01:04:26,640 --> 01:04:31,600 a place in my life where enough time has passed where I do feel strong enough that I can start 1006 01:04:31,600 --> 01:04:33,000 to advocate for them. 1007 01:04:33,000 --> 01:04:35,640 They definitely need a voice. 1008 01:04:35,640 --> 01:04:39,960 So that is something that, again, I'm still kind of working out what my path is, but it's 1009 01:04:39,960 --> 01:04:44,940 something that I have a lot of drive and passion for. 1010 01:04:44,940 --> 01:04:47,520 So we'll see what comes of it. 1011 01:04:47,520 --> 01:04:49,080 The path will reveal itself. 1012 01:04:49,080 --> 01:04:50,080 Yeah, yes. 1013 01:04:50,080 --> 01:04:51,080 Absolutely. 1014 01:04:51,080 --> 01:04:53,160 Yeah, that's the thing is I used to be such a planner. 1015 01:04:53,160 --> 01:04:58,640 I still am a planner, but it used to drive me so crazy not to know where will this end? 1016 01:04:58,640 --> 01:05:02,400 This whole experience definitely beat that out of me very well and I'm much more at peace 1017 01:05:02,400 --> 01:05:03,400 with you know what? 1018 01:05:03,400 --> 01:05:05,400 I may not know how this will end, but it's okay. 1019 01:05:05,400 --> 01:05:08,520 The path will reveal itself, as you said. 1020 01:05:08,520 --> 01:05:10,000 Your writing is online. 1021 01:05:10,000 --> 01:05:11,000 It's available. 1022 01:05:11,000 --> 01:05:15,280 I always read it on your Facebook, but do you have a blog as well that you're able to 1023 01:05:15,280 --> 01:05:20,520 share if someone feels they would be interested in reading this when maybe they're going through 1024 01:05:20,520 --> 01:05:21,520 something themselves? 1025 01:05:21,520 --> 01:05:22,520 Yes. 1026 01:05:22,520 --> 01:05:27,620 I do have a blog, so I ended up just making those same posts that you saw on Facebook 1027 01:05:27,620 --> 01:05:31,880 available on the blog for my friends who are not on Facebook. 1028 01:05:31,880 --> 01:05:32,880 I'm happy to provide it. 1029 01:05:32,880 --> 01:05:36,680 I think it's scottandbessie.blogspot.com, I think. 1030 01:05:36,680 --> 01:05:38,920 I can send you the link after this. 1031 01:05:38,920 --> 01:05:44,080 Yeah, I'll definitely link to that because I think that in a way people find things that 1032 01:05:44,080 --> 01:05:45,600 they need. 1033 01:05:45,600 --> 01:05:50,840 Sometimes serendipity works and I think that if someone finds this podcast and finds your 1034 01:05:50,840 --> 01:05:55,560 writing as well and it helps them, then it's definitely worthwhile and that we're doing 1035 01:05:55,560 --> 01:05:56,800 this as well for them. 1036 01:05:56,800 --> 01:05:57,800 Thanks. 1037 01:05:57,800 --> 01:06:00,600 Yeah, I think if I had found something like this when I was going through the diagnosis 1038 01:06:00,600 --> 01:06:04,640 phase, I think it would have been helpful because the thing that was so scary for me 1039 01:06:04,640 --> 01:06:05,640 was the future. 1040 01:06:05,640 --> 01:06:10,080 It was just imagine, how will this end? 1041 01:06:10,080 --> 01:06:11,080 And then what will my life be? 1042 01:06:11,080 --> 01:06:13,560 Will I be okay? 1043 01:06:13,560 --> 01:06:15,200 Will I survive this? 1044 01:06:15,200 --> 01:06:24,200 And I think my hope is that if somebody is facing being a caregiver, the prospect of 1045 01:06:24,200 --> 01:06:29,800 losing their loved one, the prospect of watching their loved one become increasingly ill and 1046 01:06:29,800 --> 01:06:35,320 then pass away, knowing that it's going to be a really hard journey, but you're going 1047 01:06:35,320 --> 01:06:37,060 to be okay. 1048 01:06:37,060 --> 01:06:38,180 You will survive this. 1049 01:06:38,180 --> 01:06:46,440 You have the ability to grow from this and while it won't be easy, you're going to make 1050 01:06:46,440 --> 01:06:47,640 it. 1051 01:06:47,640 --> 01:06:54,760 And I think that was reassurance that I didn't necessarily feel at the time when I was going 1052 01:06:54,760 --> 01:06:55,760 through it myself. 1053 01:06:55,760 --> 01:07:01,080 And now having looked through it, it is something that I feel more confident in telling others 1054 01:07:01,080 --> 01:07:04,120 that it is the unimaginable. 1055 01:07:04,120 --> 01:07:10,160 And I can understand why somebody might feel like they can't go on after this, which is 1056 01:07:10,160 --> 01:07:11,500 why I talked about resilience. 1057 01:07:11,500 --> 01:07:15,200 Before this, I had thought of myself as a fairly naturally resilient person. 1058 01:07:15,200 --> 01:07:20,560 But when the nuclear bomb of his diagnosis occurred, I remembered understanding like 1059 01:07:20,560 --> 01:07:24,520 I can understand why he might not be able to come back from this. 1060 01:07:24,520 --> 01:07:27,520 It was just so, so, so devastating. 1061 01:07:27,520 --> 01:07:30,640 And it's a gradual process. 1062 01:07:30,640 --> 01:07:37,680 There is, for me, there was no day that I woke up and I felt like, oh, I feel incrementally 1063 01:07:37,680 --> 01:07:38,680 better now. 1064 01:07:38,680 --> 01:07:45,120 It was always a retrospective realization of like, okay, I'm 16 months out. 1065 01:07:45,120 --> 01:07:51,200 If I compare how I was at say six months out, there's a lot now that I've been able to... 1066 01:07:51,200 --> 01:07:57,080 The fact that I can talk about this on this podcast without breaking down is actually 1067 01:07:57,080 --> 01:07:59,040 kind of a big thing. 1068 01:07:59,040 --> 01:08:04,100 I used to not be able to get on a plane without crying because the prospect of leaving the 1069 01:08:04,100 --> 01:08:08,720 house without Scott, going on a trip without him, being surrounded in an airport with families 1070 01:08:08,720 --> 01:08:11,120 and couples and being alone. 1071 01:08:11,120 --> 01:08:16,200 I think I cried every single flight I got on for maybe the first, I don't know, six 1072 01:08:16,200 --> 01:08:18,440 months or so. 1073 01:08:18,440 --> 01:08:23,840 And only recently did I realize, oh, I can get on a flight now and I may not cry on that 1074 01:08:23,840 --> 01:08:24,840 flight. 1075 01:08:24,840 --> 01:08:29,880 But it's something that you just kind of realize as you live your life, as the days go by, 1076 01:08:29,880 --> 01:08:34,480 that you do start to not move past, but I think just grow with the grief. 1077 01:08:34,480 --> 01:08:35,840 The grief will always be with you. 1078 01:08:35,840 --> 01:08:42,120 It's never going to go away, but somehow your capacity to manage it seems to grow as well. 1079 01:08:42,120 --> 01:08:45,560 And you're not necessarily conscious of when it happens, but maybe you realize that when 1080 01:08:45,560 --> 01:08:51,160 you kind of reflect back on what you're able to do versus earlier in the grief journey. 1081 01:08:51,160 --> 01:08:52,160 Yeah. 1082 01:08:52,160 --> 01:08:53,160 And what you said is absolutely right. 1083 01:08:53,160 --> 01:08:58,600 I mean, sometimes when you're in the thick of grief or like you said, nuclear bomb going 1084 01:08:58,600 --> 01:09:03,160 off, it's not always the time to be learning a lesson about life. 1085 01:09:03,160 --> 01:09:09,700 Like sometimes it just sucks, you know, just surviving and the growth and the learning 1086 01:09:09,700 --> 01:09:10,940 happen later on. 1087 01:09:10,940 --> 01:09:15,000 So I'm not saying, you know, if you're going through acute grief, you know, just read this 1088 01:09:15,000 --> 01:09:16,980 blog and you'll be okay. 1089 01:09:16,980 --> 01:09:20,400 It's more a just getting through it is enough. 1090 01:09:20,400 --> 01:09:21,400 Yeah. 1091 01:09:21,400 --> 01:09:22,400 Yes. 1092 01:09:22,400 --> 01:09:27,280 And then later on you can benefit and you can reflect and you can grow from things. 1093 01:09:27,280 --> 01:09:28,280 Absolutely. 1094 01:09:28,280 --> 01:09:34,120 And my support group, my widow support group, we talk about widow wins and that is literally 1095 01:09:34,120 --> 01:09:37,160 any small thing that we can do to get through our day. 1096 01:09:37,160 --> 01:09:41,720 Like it could involve getting out of bed and getting your kids ready for school. 1097 01:09:41,720 --> 01:09:46,160 It could be changing a light bulb or it could be, you know, something like taking a big 1098 01:09:46,160 --> 01:09:51,280 trip for the first time or, you know, maybe like deciding to change your look because 1099 01:09:51,280 --> 01:09:54,160 you decide you want to put yourself out there and start to meet people. 1100 01:09:54,160 --> 01:09:59,560 I have to say that the people that I've met through my support group, I've just come to 1101 01:09:59,560 --> 01:10:06,040 have such a feeling of respect and admiration because we've all been through the worst and 1102 01:10:06,040 --> 01:10:11,560 we've all sort of like kind of grown up together, you know, as, as widow, widowers and seeing 1103 01:10:11,560 --> 01:10:16,680 the kind of like the challenges or the steps that people are taking in their lives. 1104 01:10:16,680 --> 01:10:18,400 And you know, it's, it's not easy. 1105 01:10:18,400 --> 01:10:21,400 Like there's definitely ups and downs. 1106 01:10:21,400 --> 01:10:27,080 It's far from a linear progression upward, but I really feel like these people are heroes 1107 01:10:27,080 --> 01:10:32,400 in terms of the courage, the steps and courage that they take and the steps and vulnerability 1108 01:10:32,400 --> 01:10:34,760 that they take as well. 1109 01:10:34,760 --> 01:10:39,480 So you know, like even just doing something small, like taking care of yourself, eating 1110 01:10:39,480 --> 01:10:44,240 a good meal, you know, just doing something small like that's, that's really important 1111 01:10:44,240 --> 01:10:47,600 and worth celebrating as well. 1112 01:10:47,600 --> 01:10:54,080 That's one thing that's hard for society in general to deal with when seeing grief is, 1113 01:10:54,080 --> 01:10:58,800 I think, especially in America, people really want to fix the problem and it really, really, 1114 01:10:58,800 --> 01:11:00,960 really bugs them if they can. 1115 01:11:00,960 --> 01:11:05,000 And I completely get that because I'm also more of a problem solver by nature as, you 1116 01:11:05,000 --> 01:11:11,160 know, as an engineer and then realizing, well, there's nothing you can say that can fix this 1117 01:11:11,160 --> 01:11:12,160 problem. 1118 01:11:12,160 --> 01:11:16,800 Like there's nothing that can be done to cure Scott's cancer. 1119 01:11:16,800 --> 01:11:20,680 And so I think that's why maybe some people feel like, oh, I don't know what to say, therefore 1120 01:11:20,680 --> 01:11:24,640 I might withdraw because I just don't know what I can do to help. 1121 01:11:24,640 --> 01:11:30,960 And what's hard, but is so appreciated by us is just people, the people who are willing, 1122 01:11:30,960 --> 01:11:34,280 like you are, you know, just to sit down with us, sit with us in the dark, you know, and 1123 01:11:34,280 --> 01:11:35,720 talk with us. 1124 01:11:35,720 --> 01:11:41,080 We know that you can't fix our problems, but just knowing that people care and want to 1125 01:11:41,080 --> 01:11:46,760 be with us and accompany us as we're sitting in our cave of darkness helps us feel we're 1126 01:11:46,760 --> 01:11:47,760 less alone. 1127 01:11:47,760 --> 01:11:51,040 And that by itself is a huge, huge help. 1128 01:11:51,040 --> 01:11:55,400 So I'm glad that you brought that up about, you know, people not quite being sure what 1129 01:11:55,400 --> 01:11:58,800 to do when, you know, they see somebody going through grief. 1130 01:11:58,800 --> 01:12:01,520 And I'll be honest, before I went through my thing, I probably would have been one of 1131 01:12:01,520 --> 01:12:02,520 those people. 1132 01:12:02,520 --> 01:12:07,800 I wouldn't quite, you know, I would certainly like feel a lot of empathy for them and wish 1133 01:12:07,800 --> 01:12:09,360 them well and support them. 1134 01:12:09,360 --> 01:12:14,240 But I think I too would have, you know, wondered like, okay, well, you know, what can I say? 1135 01:12:14,240 --> 01:12:15,580 What can I do? 1136 01:12:15,580 --> 01:12:20,080 So you kind of have to, I think, live it a little bit to really understand how powerful 1137 01:12:20,080 --> 01:12:26,800 it is just to have somebody sit with you and just be there and listen to you and put, you 1138 01:12:26,800 --> 01:12:31,560 know, their arm around you as you're going through the darkest times of your life. 1139 01:12:31,560 --> 01:12:32,560 Yeah. 1140 01:12:32,560 --> 01:12:33,560 Yeah. 1141 01:12:33,560 --> 01:12:37,840 And if people take, you know, nothing else but that from this podcast, I would be happy 1142 01:12:37,840 --> 01:12:41,000 because I think people out there need support. 1143 01:12:41,000 --> 01:12:45,160 And if we can learn how to better support people, then it's a win all around. 1144 01:12:45,160 --> 01:12:46,920 It will impact so many people. 1145 01:12:46,920 --> 01:12:47,920 Absolutely. 1146 01:12:47,920 --> 01:12:48,920 Yes. 1147 01:12:48,920 --> 01:12:52,840 Sadly, you know, I think you said earlier that everybody will experience loss at some 1148 01:12:52,840 --> 01:12:53,840 point in their life. 1149 01:12:53,840 --> 01:13:00,800 And I think going through that does, I think, reveal to people that experience. 1150 01:13:00,800 --> 01:13:04,200 But you know, hopefully just knowing that, hey, it's okay. 1151 01:13:04,200 --> 01:13:08,480 You don't have to fix, you know, whatever the issue is that is going on. 1152 01:13:08,480 --> 01:13:10,960 It's just okay just to be present and just to listen. 1153 01:13:10,960 --> 01:13:15,880 That is something that I just can't emphasize enough as something that can be so helpful 1154 01:13:15,880 --> 01:13:20,560 for the people in your life that just might be hurting and needing some help. 1155 01:13:20,560 --> 01:13:21,560 Yeah. 1156 01:13:21,560 --> 01:13:27,440 I think that's a beautiful way to finish our conversation today, a lesson for everyone. 1157 01:13:27,440 --> 01:13:30,760 And thank you so much for joining. 1158 01:13:30,760 --> 01:13:34,000 I mean, you managed to get through this without getting emotional. 1159 01:13:34,000 --> 01:13:36,560 I got emotional. 1160 01:13:36,560 --> 01:13:39,400 And I think that the listeners will really benefit. 1161 01:13:39,400 --> 01:13:41,040 So thank you for sharing this. 1162 01:13:41,040 --> 01:13:44,760 I'll be honest, Erica, I almost started crying when you read that intro. 1163 01:13:44,760 --> 01:13:46,040 It was so kind. 1164 01:13:46,040 --> 01:13:51,000 And I was like, okay, don't lose it at the very beginning of the podcast. 1165 01:13:51,000 --> 01:13:53,240 Keep it together. 1166 01:13:53,240 --> 01:13:57,920 Thank you for this opportunity to share with you the kind of person Scott was, the impact 1167 01:13:57,920 --> 01:14:01,760 that he had on my life and sort of my journey ever since. 1168 01:14:01,760 --> 01:14:07,400 I really appreciate just the opportunity to be heard. 1169 01:14:07,400 --> 01:14:11,440 And I hope that for anyone else who is going through something like this, I hope they will 1170 01:14:11,440 --> 01:14:13,080 know that they're not alone. 1171 01:14:13,080 --> 01:14:15,260 There is a community out there for them. 1172 01:14:15,260 --> 01:14:19,040 I had to decide if my life had meaning after losing Scott. 1173 01:14:19,040 --> 01:14:20,920 And I ultimately realized that it did. 1174 01:14:20,920 --> 01:14:23,600 I didn't feel that way right away. 1175 01:14:23,600 --> 01:14:26,360 It took me some time to find it and I'm still finding it. 1176 01:14:26,360 --> 01:14:32,080 I think just being able to connect with people, find joy still in this world, and just share 1177 01:14:32,080 --> 01:14:37,000 those moments of connection with my family, with friends, with new friends such as yourself. 1178 01:14:37,000 --> 01:14:43,080 It has given me this renewed gratitude that as hard as it has been, I am so grateful to 1179 01:14:43,080 --> 01:14:44,080 be alive. 1180 01:14:44,080 --> 01:14:47,560 And that even though I have to go on without Scott, which is not something I wanted, I 1181 01:14:47,560 --> 01:14:48,760 am doing my best for him. 1182 01:14:48,760 --> 01:14:50,680 And it was something that he wanted for me too. 1183 01:14:50,680 --> 01:14:55,600 He told me multiple times that he really wanted me to have a full and rich life after he was 1184 01:14:55,600 --> 01:14:56,960 gone. 1185 01:14:56,960 --> 01:14:59,000 And I told him, I don't want to let you down. 1186 01:14:59,000 --> 01:15:03,360 And he told me the only way that I could let him down is if I gave up. 1187 01:15:03,360 --> 01:15:08,560 That is something that I also tell myself as well whenever I'm having a dark moment 1188 01:15:08,560 --> 01:15:15,320 or feeling down that I do want to live my life in a way that would make him proud. 1189 01:15:15,320 --> 01:15:21,160 Just remembering the type of person he was and honoring him is the thing that I think 1190 01:15:21,160 --> 01:15:23,000 gives a lot of meaning to my life. 1191 01:15:23,000 --> 01:15:26,800 And then just reestablishing my own identity as well. 1192 01:15:26,800 --> 01:15:32,080 Independent of my role as his wife is something else that I'm currently working on as well. 1193 01:15:32,080 --> 01:15:36,000 And thank you for letting me share my journey with you. 1194 01:15:36,000 --> 01:15:39,040 It's a beautiful journey, Bessie. 1195 01:15:39,040 --> 01:15:40,520 Thank you for listening today. 1196 01:15:40,520 --> 01:15:43,320 I hope this has been a useful investment of your time. 1197 01:15:43,320 --> 01:15:47,280 If you feel inspired by this episode, please rate it and consider subscribing. 1198 01:15:47,280 --> 01:15:49,120 I'm keen to know how it's impacted you. 1199 01:15:49,120 --> 01:16:02,640 Now go out there and seize those moments.