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The Samfund from Expect Miracles Foundation
Welcome to Health After Cancer. I'm Lidia Schapira and I'll be your host today. With me in the studio is Natasha Steele. Hi, Natasha.
And joining us today is Samantha Watson, a two time cancer survivor, advocate and activist. Sam, it's good to have you. Welcome to our show.
Thank you so much. It's so good to be here with you guys.
Let's start by having you share a little bit about your cancer story. I know I've heard this so many times and every time I learned something new. How did cancer find you?
My mom was an oncology nurse at Sloan Kettering in New York, and so I was around cancer when I was a kid because I would go after school and wait for her to be done, or I knew all her friends from work, but I never really knew what it was all about. I had no close friends or family members, thankfully, who had gone through it. And then when I was in high school, I started having knee pain and went through just a series of tests and it would come back once a year and nobody could figure out what it was. And then in my senior year of college, I was at Brandeis University and this knee pain came back and they ran all the tests and nothing really came back conclusive. And it was actually my primary care physician up in Vermont who recommended that I get a bone scan.
I got the bone scan in December of '99, and I remember feeling validated because I didn't understand what a bone scan was. I didn't know enough to be afraid of what they were looking for, but the bone scan lit up and to me it meant that I wasn't crazy. And I had gone through the better part of four years going through all of these tests without anyone being able to tell me what it was. And finally there was something that was causing the pain. And I remember getting back to my dorm and I called my mom and I was like, "Great news, the bone scan lit up." Which for an oncology nurse is the opposite of great news, but it all sort of started from there. I was 21 years old and I was diagnosed with Ewing sarcoma in my tibia. Very, very thankfully, it had not metastasized and I was able to start treatment almost immediately within the month.
And I went through seven rounds of high dose chemo. I went through a 12-hour surgery in April of 2000, actually the week before my birthday. So right before I turned 22, we actually had birthday cake in the hospital. But the week before I went through this major surgery and I spent many, many months not only learning to walk and going through the treatment and being sick and in the hospital. But watching my friends graduate from college and move into their first apartments and start their independent lives. And I didn't necessarily have the terminology to understand young adult cancer at that time. I don't think people were really talking about it. But what I came to realize after all of my treatment was that yes, the diagnosis was terrible. The treatment was hard, spending all the time sick and in the hospital was awful. But it was actually my age and life stage that made it even worse because I was supposed to be doing so many other things.
And so I went through all my physical therapy. I was getting ready to go back to school. I had one semester left and I did go back in January of 2001. And I loved it. I loved being back at school with my friends. I loved feeling somewhat normal even though I was mostly bald and I had forearm crutches and I struggled a lot, but I loved that I could be in a normal sort of phase of life with my friends. And I noticed that I was getting sick a lot and I caught everything that goes around a college campus. I got the flu, I got strep, I got colds, I got all of it. And my doctors kept saying, "Don't worry, we just gave you so much chemo that your bone marrow's tired and we'll see what's going on down the line." And the day before my 23rd birthday, they did a bone marrow biopsy.
And I remember saying to them, I spent my 22nd birthday in the hospital. I am not spending my 23rd birthday in the hospital, so I will see you the day after tomorrow. Which was good because the day after I turned 23, I was diagnosed with secondary myelodysplastic syndrome. So an early form of leukemia that had been caused by the chemo that I got for Ewings. And there are a lot of things, there are a lot of things that were very unlucky about this whole experience. But I think within the context of that, I could not have been luckier with the way things happened because not only did I have my parents advocating for me, and my mom was an oncology nurse at Sloan Kettering and I had all of these people in my corner. But I also, when I was told that I needed a bone marrow transplant, they found a donor within a matter of months.
I was able to go back to school. I graduated from college. And then about a month later I started chemo again and had a bone marrow transplant in August of 2001. So after that, I spent about three months in the hospital and then came back every day, every week, every month for about a year. And then it was about a year later that they said, "Okay, you're good. Go live your life." And that's when I realized I had no idea what that meant because I had already graduated from college and I hadn't yet started working. My friends sort of developmentally and professionally were a couple years ahead of me at that point. And so I didn't know where to go. I didn't know what to do. And we can talk more about sort of professionally what I ended up doing, but that was really when I started to process my whole experience.
And I started to learn that survivorship is its own chapter and navigating life not only as a cancer survivor, but specifically as a young adult cancer survivor brought with it so many challenges and so many unique experiences that very few people around me understood. And so I think with a lot of traumatic experiences, you do what you have to do. You go through it almost with blinders on because you have to. And then after the fact when things hopefully slow down, that's when the processing starts and that's when the understanding starts. And in a lot of ways, that was actually one of the most challenging times for me, more so than when I was in the hospital because I was also then tasked with managing my own health and my own healthcare.
There's so much in what you just said that is so powerful. First thing that I am hearing is how your life was interrupted by this at this very crucial time and how there were scars that were visible and others that were invisible, and that the processing of all of this started when the huge effort of treating the cancer for cure sort of finished. Can you take us back there just a little bit and help us understand some of the things that were particularly helpful to you at that moment of transition?
Sure. So I feel like in order to answer that question, I first and foremost need to just acknowledge the incredible privilege that I have because I had access to care at a top institution. My mom's an oncology nurse. I was born and raised in Manhattan. And so all of my people were there, my friends, my family members. We had the best support network all along and throughout. And I also, I think because I was diagnosed as a senior in college, I had the full support of my university because they knew me. I'd been there for a while. And so I think it's really important to acknowledge all of that because without any of those people and sort of supports in place, my story would've looked very, very different. And so on the medical side, I had a survivorship care plan before people were even really talking about it.
I had a list of the treatments that I got and the recommendations for screenings and all of the things that I could hand to a primary care physician. Which in itself is a huge part of the transition from acute care into survivorship care. And so even though I was in my twenties and I was new to navigating sort of my own healthcare experience, I had all of the right tools in place to be able to do that. And I also was in touch with my medical team all the time. And so if my primary care had a question, I would email my oncologist or I would email my survivorship nurse. And that in itself was a huge privilege too. We just had open lines of communication. And so in that respect, I never felt like I was free-falling. I never felt like I couldn't figure out where to go next.
And that, I think in hindsight more than anything else, I realized how much harder that could have been. Financially was a totally different story. Because while I was in treatment... So I grew up in Manhattan, we moved to Vermont when I was in high school, and my mom worked for the hospital in Vermont in southern Vermont, and she had the best boss in the whole world. And so when I was diagnosed, she was kept on payroll, she wasn't being paid, but we kept our benefits. And so I was under 26, I was still on her health insurance, and she was able to be my full-time caregiver and advocate. And as I said, my friends and my family were all in New York when we needed a place to stay, everybody opened their home to us. When we would come up to Vermont in between visits, there was food in our fridge and all of these things that you read about. I mean, that was my story, which is incredible.
And then a day came when my mom and I got a bill. Well, I, it was addressed to me, got a bill in the mail for $274,000. And we laughed because that's a ridiculous amount of money for anybody. Nonetheless, someone who was not even 25. And my mom so thankfully understood the healthcare system had the time to put up a good fight because she wasn't working at that time and just wasn't intimidated by the process of appealing and waiting for what ultimately ended up being denials and appealing again and waiting for decisions. And so I couldn't have had a better advocate in my corner, but it took two years for that bill to be dropped. That was such a light bulb moment for me because at the time, I probably didn't appreciate just how devastating that would've been if it had gone a different way. But I started to meet some young adults and they didn't have parents that could advocate for them like that, and they didn't have the bandwidth to put up such a fight, and they were struggling in profound ways.
And so that I think was one of the most sort of memorable parts of early survivorship was recognizing the financial fallout from this. And very thankfully, again, I was able to move back to Boston. I had a friend who helped me get a job. I had another friend who was looking for a roommate on an apartment that was affordable. And all of these things sort of fell into place. And I think even with all of these supports, because I'm incredibly grateful for all of the privileges that I've had and all of the supports that I've had, it was still really hard. It was still really hard to go out on a first date, and it was still really hard to go on a job interview, and it was still really hard to look in the mirror and see someone that looked so totally different than I thought I was supposed to look.
And so I think there are things that certainly went better for me than they go for most people, and I am incredibly grateful for that. But I don't want to make it sound like the survivorship, especially in the early years, the survivorship experience was easy because it was really, really hard.
Lidia Schapira:So as a young adult, can you tell us a little bit about what it was like in your twenties to look at your body and just think about what wasn't there or what was there that you didn't want?
For me, my cancer was in my tibia, and when they took it out, they took out six inches of my bone. They screwed in a new one, basically. And they did a skin graft, which is about the width of a tennis ball around my knee. And so I have a scar that runs from above my knee down to my ankle. And in some ways, that was sort of the easiest one to hide because I didn't have to wear shorts. And so nobody really had to see that until I was ready for it. That time my hair was very short and I was still on crutches for a while. And I think the hardest thing for me was figuring out where to place my cancer story. Because I had seen so many of my friends go through this same sort of trajectory of graduating from school and getting their first apartment and starting to date and developing careers and climbing career ladders and things like that.
There's a narrative that a lot of young adults tend to share. And I didn't know where I belonged in that. I mean, as one example, I interviewed for my job over the phone and I was working for... Well, I'd interviewed for a job at a public health education nonprofit, and I had no job experience. I had a year long gap on my resume. I weighed about a hundred pounds. My hair was very short, but they couldn't see any of that. And I interviewed over the phone. They didn't ask me about the gap on my resume, and they hired me because I spoke Spanish. That was the only job qualification that I had. And it turns out that they were actually the most wonderful group of people that I could have worked for. And when I showed up the first day with my crutches and my short hair, they didn't even flinch and they were so supportive.
But I didn't know that when I was interviewing, and that was a very intimidating sort of time. And thankfully, I had a friend who was working at that organization and she knew that it would be a safe space for me, and I knew that I would have a familiar face when I got there. So I was really, really lucky that it worked out that way. But that was a really scary experience. Once I was starting to work and my roommate and I were starting to go out to bars and whatever it is we did when we were 24. I started dating and it was very interesting because one of the things I learned was that especially in your twenties, most people have not known a peer to go through cancer treatment.
And so it was not on anyone's radar. And what I learned was that their response directly correlated to my presentation of my cancer story. If I was having a bad day and I felt sad about it or wasn't feeling particularly good about it, that came across. And I noticed that on one date, the guy didn't really know what to say because he felt bad for me, which was not exactly what I was looking for, but it's in how I presented it to him. And then there was another time that I brought it up sort of without meaning to and took him by surprise. And that didn't work either because that was uncomfortable for everybody.
And then along the way, when I was about 23 or 24, I started a nonprofit organization to support young adults who were struggling financially. And I was so excited about it, and I was so fired up about not only being able to help other people, but being able to channel my own experience into something good and take all of these big feelings and just do something productive with it. And when I was going on dates and people asked me what I did for work, and I was still working at this public health education nonprofit, but I was also now creating the SAM Fund on the side, I would talk about that. And the natural next question was, well, how did you get started? So I said, oh, well, I had cancer a couple years ago, and I realized how expensive it was, and I started to meet these young adults, et cetera, et cetera. And that was very different than, I had cancer a couple years ago, and it was really awful.
And so I started to learn that I was much more in control of my narrative than it felt like I was. And that if I didn't feel sorry for myself in the telling of that piece of my story, then nobody really could feel sorry for me. So many of us, and it was certainly true in my case, come out of treatment as you said, looking different, feeling different, and quite honestly, feeling like the dented can aisle. We're starting from the deficit. We're less than other people around us or just feeling like we're not where we're supposed to be yet. And to be able to be in control of your cancer story and therefore to be able to have some modicum of control over how people respond to you was incredibly empowering and I think is a really important thing. Especially for young adults who are really sort of figuring themselves out in the first place. When you add cancer to that, it's that much harder.
Sam, not everybody wants to talk about the mental health of the cancer survivorship experience, but you've been very frank about that. Can you tell us a little bit about what you think is important about mental health for people undergoing treatment for cancer?
Mental health is so critical, especially in the aftermath when all you can do is think about it, right and process it. So I had the world's best therapist who to this day is a support to me. And I think a lot of what she did was validate for me that this is not something that I chose. This is not something that necessarily needs to ruin my life and that it's okay to feel all the feelings. It's okay to be angry. It's okay to be sad, It's okay to grieve loss. It's okay to find the good in it. It's okay to learn from it. And we did this over the course of a few years. One of the worst things about young adult cancer is that the survival rates are terrible, and they certainly were even worse at that time. And so when I finished treatment, I didn't have many peers left. I didn't had maybe three or four young adults that I had gone through treatment with that survived.
So much of what you said about going to therapy and losing your friends really resonates with me. I also felt the whole time lucky I had Hodgkin's not a different disease. I was a doctor at the hospital that I was getting care, I had health insurance. There were so many moments where people would come up to me and say, "Oh, I heard what happened. This is awful." And I'd say, "No, no, no, this is fantastic. This is going to be okay." And I think part of that, I mean, Lidia and I talk a lot about cancer mindsets, and part of that is who I am is who you are in terms of that type of coping mechanism and positivity. I think the dark side of that is I felt lucky until, through similar experiences to you. All my friends died and I didn't felt lucky. And I was going through trauma after trauma after trauma, and instead of holding space for that trauma, I was saying, "Gosh, I'm so lucky. It's this trauma, not that trauma."
It's like getting in a car accident and losing a leg and feeling thrilled, it wasn't a plane accident where you lost four limbs. I mean it, I think for me, a huge challenge of survivorship was holding space for what actually happened rather than having to manage it so much for myself and for others with this positive vantage point. And both things are true, right? We are incredibly lucky. That's real, and something really life altering happened to both of us, and it's okay to kind of oscillate between those two things.
I love the way you said that because my therapist is the one that taught me the word and because it is what allows you to have all of these big feelings at the same time without having to be like, oh, but this thing. And oh, but I'm supposed to feel that way.
Sam, one of the things that young cancer survivors have often shared with me is how difficult it is for them to just find their people, their peers. How did you do that?
I think one of the biggest challenges of survivorship in the early years, but it's one of the ones that does not go away with time is survivor's guilt. And so my experience was a little bit different from what you were describing because every time we have lost somebody to cancer, I have this massive survivor's guilt because as I said, I just got lucky. That's why I'm here. I had privilege, I had great care. So did a lot of people, and it was the flip of the coin.
And one of the things that my therapist repeated enough times until I finally heard it was that my being here, my surviving has no connection to other people not surviving. And that was one of the most important things she taught me, because in my head it was all connected. But why am I here when all of these other people are not? I'm not a religious person. For me personally, I don't believe everything happened for a reason because there were too many things that I couldn't explain. There's no good reason why my friends died, and she really had to repeat it many times for me to hear it, that one has nothing to do with the other. But survivor's guilt is so overwhelming.
No, I can completely relate to that. The other thing it creates is a database of memories for you of what your life could have been like. For me, when two of my friends that I got care with passed away and I went to their funerals and I sat with their partners and I was with their children and I dog sat their dogs, it was watching a version of my reality that could have happened. And that's hard too. Like their stories had nothing to do with my cancer. But this is very hard to not play it out like it did.
I imagine, Sam, that you'd talk with your children about cancer in a very sort of normal way. But have you ever made sort of a concerted effort to sit down as a family and talk about what cancer has meant to you and how it sort of shaped so many of the aspects of your life and even how you came to be a family?
So it's really funny that kids are so perceptive and they are so smart and they notice everything for better or worse. And so I don't remember ever sitting down with my kids and saying I had cancer. I also don't remember ever sitting down with them and saying, you were adopted. Because the philosophy around adoption when we were going through the process at least, was that it's not a secret. It's a part of their story. And I think I learned so much from all of the adoption training that we had to go through that helped me, and I didn't realize it at the time, but it informed how I ended up talking to them about cancer too. There wasn't a day that I disclosed it to my kids. They'd seen my scar since they were old enough to remember.
And I think it's so interesting what they recognize and what they ask about. So my scar that runs on my whole leg, my daughter for a long time actually thought that it was because I fell on the beach several years ago. She had seen the scar her whole life, but then I fell and she was probably four or five at the time, so she was still little. And she knew I had had cancer, but she knew what that meant. And then when someone would say, why does your mom have a scar? She would say, well, she fell on the beach. So I realized at that point I did have to sort of explain a little bit more about it. Actually, it was my son first. He's a little bit older. He surprised me the most. This is one of my favorite stories of all time.
So they knew that I had cancer. Probably what they knew was that I was really sick when I was younger. I don't know that they even understand now what cancer really is. Now they know that you're in the hospital a lot, you're bald, sort of the most obvious pieces of it. I think for many years they just knew that I was very sick and that I had gotten better. And so my son, who is very quiet and introverted, doesn't talk a whole lot, but notices everything. He was in about maybe the third grade or the fourth grade, and I was working on a grant proposal and my kids knew what I did for work kind of. They knew that I helped people who had cancer.
And on this particular night, he was trying to get out of doing his own homework. And so I said, "Okay, I'll tell you what? I'll do your homework if you write my grant proposal." He's like, "What are you writing a proposal about?" And I said, "I'm trying to get a grant." I forget exactly what it was for now, but it was something Sam Fun program related. And I wanted to develop a program to help young adults. I forget what it was, but I was writing a grant proposal. He went into his room for a solid half hour and came out with one page, one entire page in his little boy handwriting that said, "My mom helps people who were sick and she helps them pay their bills." And oh, I'm going to cry even thinking about it. He said, "You don't know how expensive it can be to get cancer, and so you should help my mom." And he wrote this whole paragraph about it. I did actually submit it with the grant proposal, but the fact that he was paying attention and the fact that he understood it in that way was remarkable.
And it made me feel proud that I had involved him in my story and to know that he was proud of me. Let me forget it, that was amazing. And with my daughter, it's actually, she surprises me all the time. So she's 10 and a half now, and we went for parent-teacher conferences recently and somehow it came up, I forget how it came up that I had had cancer. And her teacher was like, "Oh, Emmy told the whole class about it. We all know about your story." And the reason it came up was because they have to do persuasive essays and they all have to do, the way Emmy describes it, they have to make an I have a dream speech. And Emmy has decided to write about how expensive cancer is and how it's not your fault if you get sick and you shouldn't have to pay all of these bills.
And I love that that's what they think about. They don't think about cancer as a threat in terms of me and my ability to be their mom. It's just part of my story. And we've always sort of come at things with them factually. So cancer is a part of my story, and adoption is a part of our story as a family. And they're very literal children. They're very right here, right now, just want to understand the facts of what's going on. And so someday, I'm sure both of these conversations will get a little bit harder. But for right now, I hope what we've taught them is to be proud of their story just as I have become proud of mine and to never let anyone let them feel bad about it. We are a family. We are grateful to be a family. Cancer is a part of the reason that we became a family and how lucky we all are to have each other.
That's an incredibly powerful inspiring story. And I don't want our listeners to forget the huge amount of effort that you've invested in sort of getting to the place where you're at right now. And some of the things you talk about is having this amazing community that has supported you, having your mom as the most amazing cancer advocate and caregiver. But finding and in your own effort comes through of finding the right people and in really taking the time to do the therapy and being very concierge and deliberate about how you disclose and how you form a community and grieving your losses and then celebrating some of these growth opportunities that come from your experience. It's really amazing.
And I wonder if you have perhaps some advice for people listening who are struggling with different aspects of their own cancer story. Whether it's how to pay the bills or how to tell their romantic partner, or how to talk to their doctors about their ideas about their own fertility. And maybe that's never been addressed. I mean, we know that that doesn't get talked about enough in clinical settings. As you said, the often the focus is on, we need to deal with a cancer and we'll mop up later, which is not the most helpful thing for cancer survivors. So tell us a little bit about how we can do better in the clinical side and how people with cancer living with and beyond can advocate for themselves.
I think on both sides, on the patient side and on the provider side, we can't be afraid to ask the questions. I think I met a lot of young adults, especially along the way, who are afraid that asking questions means that you're questioning your doctor. And those are not the same things. Asking questions means being informed. And the same for providers, asking questions means being informed and what your patient is going through. And I think it's hard because of time constraints, you know have X number of minutes per patient and probably have to focus on the clinical. And at certain points, absolutely that is the most important. But I think it's the whole rest of their life that's equally important because so many young adults are dealing with employment issues, are dealing with maybe fertility issues, are dealing with maybe partner issues, or maybe choosing to go forward solo and become a parent.
There's so much outside of the clinic space that young adults go through that I think the most valuable question providers can ask is, how are you? Not how are you feeling? How are your side effects? All of that is important, but how are you? Because even if the provider is not the one that can sort of give the support or know the answers, they might be able to help connect somebody up. So for example, if somebody is struggling with a medical bill, hopefully either a provider, a social worker, somebody in the medical space knows that there's a financial navigator in the hospital that they can talk to, or that there's a patient assistance program that they can access. Some way just to sort of point them in another direction. But I think on the patient side, it's equally important to ask the question. To say, "Hey, I just got this bill in the mail and I'm not really sure what I'm going to do about it."
There's generally, from the thousands upon thousands of young adults that we've heard from over the years, there is generally a consensus that if somebody does not pay their medical bill, then their doctor is not going to get paid. And there's so much shame and there's so much anxiety, and there's so much misunderstanding about how the billing system works that they are so afraid to bring that up. And they would rather either skip the appointment altogether so that they don't accrue another bill or just keep accruing the bills and either max out a credit card or let it go to collections. And either way is bad. And I think so many times communication can mitigate that. So I think keeping the communication lines open in both directions is really important. Equally important for caregivers to be part of that conversation because sometimes they can hear better because they're a little bit more removed than the person who's directly in it.
So I think that's one thing. I think giving yourself the space, and this is directly to the patient audience, giving yourself the space to have all the feelings. I think we are bombarded all the time with media and celebrity stories and all of this stuff about cancer being such a gift and cancer being the best thing that ever happened to me. And maybe for some people that's true, but it doesn't leave much room for people to feel really badly about their cancer. It doesn't leave room for all of the other emotions that go with it. And that's why I'm always really careful when I share my story. And I started it here as well, to acknowledge my privilege in all of this and to also say there was good and there was bad. All of the things are true. And because I have learned a tremendous amount from my cancer experience does not mean I would go back and choose it again.
And the fact that I would not go back and choose it again does not mean that I am not incredibly grateful for where my life is right now. And I think we feel like there's this dichotomy that either we're grateful and everything is wonderful, or cancer's the worst thing that ever happened and my life is over. There's so much middle zone there that we need to be able to be in that space and feel all of the feelings. And my last piece of advice, which is my favorite piece of advice, is to find your people and hold on tight. Because even having one person that understands what you're going through, that you don't have to put a disclaimer on, you don't have to explain. You don't have to really say more than you want to, to have someone that understands that in their soul is worth its waiting gold.
This has been a wonderful conversation, Sam. Thank you so much for sharing your wisdom, your insight, your experiences, and thank you all for listening with us to this episode of Health After Cancer. We'll see you next time. If you enjoyed listening to us today, please rate, follow and subscribe to Health After Cancer, wherever you listen to podcasts.