Talk About Cancer
Talk About Cancer is a podcast of stories from cancer patients, survivors, caregivers, and family members. The host, Serena Hu, talks to her guests about their emotional journeys with cancer and what happens to the relationships in their lives after a cancer diagnosis. They sometimes explore how culture and faith shape each person's experience of cancer and grief. You will find diverse perspectives, honesty, and wisdom in these stories to help you deal with cancer and its aftermath. http://talkaboutcancerpodcast.com
Talk About Cancer
We were so young
Rachel shared some of the most intimate moments from her and her late husband’s cancer experience, including how she knew when it was time to let go.
You can find Rachel’s book Wife, Widow, Now What? on Amazon and follow her on Facebook and Instagram.
Also, check out CaringBridge as a resource for anyone who wants to blog about your health experience but doesn't want to deal with the headaches of set up a blog site.
Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.
Have topic suggestions or feedback about the show? Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com.
Thank you for listening!
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My reflections on the conversation:
We covered so much ground in this conversation with Rachel, from the initial diagnosis all the way to forging a new life years after her late husband’s passing. I know the topic of end-of-life can be so overwhelming for many and I totally understand why, but for those who have to face it, a resource like Rachel’s book can be incredibly helpful.
Over the past four years, I’ve thought a lot about my dad’s end-of-life process and have come to the same conclusion as Rachel, that I was able to find peace when my dad died because I knew my mom and I did everything we could and respected his wishes all along the way. In my mind, that counts way more than how we say goodbye in the end.
I was rooting for the Rachel from 8 years ago when she was dancing to Joy Division and telling Grayson that he had beat cancer. Unbeknownst to her at the time, she would also eventually beat cancer, although not without some twists and turns.
Hey everybody, welcome to episode 29 of the Talk About Cancer Podcast. This is your host, Serena. In today's episode, Rachel shares some of the most intimate moments from her and her late husband's cancer experience, including how she knew when it was time to let go. Let's dive into her story now, and I will check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.
SPEAKER_01:Yeah, my name is Rachel Ingstrom. I am 39. I live in the Minneapolis St. Paul, so we call it the cities, the Twin Cities area. I moved to Minnesota not knowing one person when I was 18 and to go to the University of Minnesota and didn't really plan on staying here. But I met someone my sophomore year, first semester, and we hit it off. And when I was 22, we got married. And when I was 28 and he was 35, he was diagnosed with acute lymphoblastic leukemia, which forever changed my life. Um, I took him off life support two days after I turned 31. So my life has kind of been a calamity of errors, totally not what I've planned, but it has brought me here today, eight years later, to share my experiences, the book I wrote about how to help other people. And I'm just really excited to be here today with Serena to talk about my journey and really how you are not alone. You totally feel like it, like you're in your own fishbowl and you're banging at the sides of the glass, but you are not alone. And there are people like me who definitely want to help you um get through your journey or look at where you are in a different way.
SPEAKER_00:Thank you so much for that intro and uh really excited to learn a bit more about what's in your book later in the conversation. But just to start, can you take us back to when you heard the diagnosis that your husband received and you said I think you were 28 at the time, right? What was that like for you?
SPEAKER_01:It was really bizarre, especially since he, you know, just really didn't feel well. He works nights um at a printing factory where he mixed the colors of ink that got printed onto flexible packaging. Like, you know, when you go to the salon and you the bag, your shampoo comes in and stuff like that. He mixed the colors. And he was supposed to work three to eleven, like our entire relationship was, you know, Monday through Friday. We wouldn't see each other. And he had been working a lot of overtime, um, working sometimes from three to like one in the morning or two in the morning. And I got up to go to the bathroom on a um Wednesday night, and it was like two in the morning, and he was sitting on the floor in our kitchen, and he couldn't even stand the 90 seconds for the microwave. He could not physically stand up. He was so tired. Um, so he went to the doctor's office. I gave him the business card in my primary. He didn't have one at the time. They thought he was just anemic. So the next day on Thursday, he went, had um blood transfusion, and as we were about to leave, they were like, you know, wait, we're talking to your doctor. So they sent us to the Humphrey Center down the road. We didn't know it was the Humphrey Cancer Center. So we're they were kind of freaking out. He's starting to cry. We don't know what's going on. They misdiagnosed him with a rare blood disorder that was like seven days a week. So every day for 21 days, going in, cycling in and out his blood, and then he's good. So we're thinking, okay, that's doable. And right before we go, he goes to the bathroom and then he comes out and I'm waiting for him, and he raises his long, tall arms. He's 6'2, and the Aaron says, At least I don't have the big C. And then we get a phone call a couple hours later at home, and it's the doctor that we just saw, and she said, you know, we found out that's actually not what you have. And he said, That's good, right? And she said, Grayson, actually, no, we need you to come in tomorrow and have a bone ram biopsy. So as he's having the bone ram biopsy the next day, I just instinctually, I just I feel it in my bones. I know that he has cancer. So I start asking the nurses as he's completely out. I ask them and they're telling me, you know, doctors, lawyers, marathon runners, people have leukemia, they get treated, then they go back to the normal life. You know, he's totally gonna be fine. And I'm quickly embracing that. So then we leave and they tell us, you know, it's Friday, we'll have to wait till Monday for the results. And that's a long time. That's a long weekend to wait. Yeah. We ended up getting a call on Saturday morning, and they told him that he had cancer. And it was just really, really bizarre. It was very surreal. It felt like one of those things where you're floating above your body. But for me, it was more like, okay, this is what we have to do. For me, it was totally my faith. It was the grace of God helping me with all of it. But it was all right, this is not what we had planned. You know, at this point, we'd been married like six years, we'd been together nine years. We had the house, we had the dog, we thought we were gonna have kids. Um, so it was just like, okay, this is what we have to do, but do not freak out in front of him. Do not let him see how scared you are because he was just in a state of shock. And then because of his age, the first thing they want you to do is go freeze your sperm. So that was really weird. To like you're trying to come to terms with the fact that he has cancer, and then they send you this weird experience, and then it just became second nature, as bizarre as that sounds. It was he um was in a clinical trial at the University of Minnesota that they usually use for PEADS patients. Um he was the cutoff, it was like 18 to 35, and he was 35. So he was there five weeks um for the first induction phase. And, you know, I brought the lamp from home and blankets and pictures of our puppy and all, you know, made it our own little apartment. And I found out the nurses were like, oh, the little lovebirds are in their apartment. And to me, it was like, this is where he is, so this is where I'm gonna be. And, you know, we would watch movies, we'd be holding hands. It just became our new normal. And it was kind of like, well, what other choice do I have? So I was working eight hours and running home to let the dog out, and then running home to the hospital. And it was just on autopilot, like when you're driving somewhere and you snap back into focus and you're like, oh my gosh, how did I not run off the road and die? It was just survival mode and just believing we're so young, things are gonna be perfect. It's like full house or whatever, and there's the lovey music, and everybody gets along again, and you know, of course it's gonna be better. So I was just living, assuming all of that.
SPEAKER_00:It's so interesting how in a relationship like that where one of the family members gets diagnosed with cancer, others just instinctively know, like, do not break down in front of the person and just try to hold it in. But it's hard. So how did you find support in that process?
SPEAKER_01:Yeah, I think that was God's grace, but I don't know. I was 28 years old. We told each other everything, we were with each other's world. But somehow I knew he's going through his own war. You cannot put that on him. So I had friends that I would, friend or a sister or my parents that I would call on that 20-minute drive home from the hospital every night. And they just knew, okay, at this point in her journey, we're not gonna talk about ourselves, we're just gonna listen to Rachel, Bent, rant, whatever. And, you know, what's interesting is we don't think about it at the time, we just verbal vomit everything of what's going on, but more than likely we're gonna do that for them someday, you know, which is very amazing. But yeah, it was that later on, a year after he was diagnosed, I had a therapist, um, someone to talk to because I really needed someone. The beauty about therapy is it's someone that knows nothing besides what you're telling them. So that's the nice thing, is you can start from scratch. Um, but yeah, I I had an excellent support system. I found out within the first week of him being sick about Caring Bridge, the website where you can blog your medical journey. It's national, and I think it might be global. It's based out of here in Minnesota. But instead of having people text or email or call you, you write an update. And then anyone that's your support system that's subscribed to it gets an email with your update. So I very quickly started doing that, and then I would get comments back or different things, and I would just feel that support. And I started like a Team Grayson Facebook group, and he was at the University of Minnesota, and the gopher colors are maroon and gold. So my brother had Team Grayson hats made for our family and you know, fleece hoodies and things like that. So I felt the camaraderie there. But I think it was when you are the spouse or significant other or primary caregiver child, like you and your dad, you don't have the luxury, but believing that everything's gonna be fine. You're kind of on autopilot, and you are the strong one. You are the positive one. So you just go day to day thinking that until you're told otherwise.
SPEAKER_00:I sometimes look back at that time and I remember thinking at that time too, like just this feeling of pushing through things and and like getting through the day, getting through a conversation that's really tough, pushing back the tears is another kind of pushing that I remember doing a lot. And I I I don't know how I did it actually. Um and carrying bridge, that's actually a really interesting, a really interesting thing. It's nice because I know there are a lot of online support groups, um, but that's you know, with people who don't know you, which is also nice in a different way. Sometimes you want to talk to people who are just not connected to you in real life. Right. Um, yeah. But so I haven't heard of that before. So thanks for sharing that as a resource.
SPEAKER_01:And back in when he got sick in 2011, there weren't all the resources that there are now. Yeah. It's crazy to think of how how we've come forward. And I want to say, with what I had said before and then what you said, it almost sounds like we're cold people and that we don't want to share our feelings with our person that's going through it. But it's more that you just get like the hockey hip check or whatever it's called, it's like someone just like knocks you on the forehead and says, You don't have the choice, you gotta suck it up, you have to keep it there because if they know how much it hurts you, that's gonna be more crap for them to take on. Like I would tell him, as he's fighting, he was sick two years and three months. So as he's fighting, when he's tired, doesn't want to go to the clinic or doesn't want to go to PT or OT or whatever. I'm reminding him, like, this is your job. The enemy is your own body. And the medical system trying to help you is also the enemy in the fact that they're not the enemy, but they're the ones that are inflicting the Ivy and the noodles and all those things. So it's just, it's it's really tough. So when they're going through that, you definitely can't show what you're feeling. And I think that that sounds it seems like there's such a negative connotation to it, but that's where it comes in, where you need your own outside support.
SPEAKER_00:Yeah. And war analogies definitely get evoked a lot when you talk about cancer. Yeah. Um, do you think your husband was doing the same for you to some extent?
SPEAKER_01:I think so. So I thought that it was really interesting when he got sick. They're like, Yep, you need Ambien to sleep, you need Zolof to get through the day, all these types of things. He was having dreams at times, like there was like a man with a sickle chasing him, trying to kill him. So he would tell me, you know, his nightmares. But I do know that it became too much for him to bear. So he got a psychologist. So someone was able to talk to him. And when he was doped out at different times and had no idea what who I was or saying or doing, his psychologist told me, like, that's the blessing in disguise, because it takes away some of the time that if he's not aware of all that's happening. Um, so he later on had a bone marrow transplant and was in the hospital 90 days, and he had no idea how long he had been there. So he shared certain things with me, but I liken it to there were just so many demons in there that I think he ultimately wanted to protect me. But it got to the point where it was just like, I don't know how to deal with this. I'm gonna go forward and say this. Um, it's been eight years, and I gave platelets last week for the first time. I'm hooked up to this stuff, and I just start thinking all that time he was hooked up to all the poisons, the chemos, the toxins, the radiation, all those things. Because I had both of my arms done and I was at mercy of the staff and the machines. And it just threw me into this whirlwind that when I drove home, I balled my eyes out. And I was so extremely sad. He's been gone eight years and he's not in pain. But I was extremely sad of what the cancer patient goes through in that experience. I just thought, there's so much he he must have not said. So much, you know, it'd be like, yeah, it was today was a hard day. I got this, I got that. But ultimately, until they told me that his body was giving out, I didn't think that he would die. And I don't think he thought that he would die. And I learned years later, my dad, who was one of his primary caregivers, um, told me that they had had talks about death. And I'm like, he and I didn't have those talks. So it's interesting that yes, it seems he kept different things in or didn't do that. And I think that part of it was, is it because we're so young? So you don't think it's gonna happen? I don't know if that's a common thing that you have with the different people you interview, but really when you think you're young, you really think that death's not gonna get me. I'm invincible.
SPEAKER_00:That makes me think if that was because the medical professionals that the two of you were working with didn't have that transparent conversation. Because it sounded like it kind of came as a surprise for the both of you.
SPEAKER_01:Well, he had a so he was well enough. And so he came home after five weeks in 2011, and he was in this clinical trial that he was gonna be a part of with active treatment for the next five years, gonna study a total of 10 years, but he got so much better that he was only going in for, you know, blood draws every three weeks or something like that. So we just thought that he was totally better, and then his cancer came back in August of 2012, and we hospitalized him on our eighth wedding anniversary, and we knew he was gonna have a bone marrow transplant, and he had tons and tons and tons and tons of chemo, and they still weren't knocking it all out. And then they finally did, and he had his bone marrow transplant after he had all this insane amount of radiation. And I'm in a different hospital across the cities having uh endrometriosis surgery. So we're sitting together on his transplant day, like uh, on our painkillers, and we're just they're like, It's your second birthday, you're getting new life, and he's just like, shut up, you know. He had cake and everything, and when everybody left, he was just not happy. I'm like, I had no idea, you totally faked it really, really well. But um, his doctor did tell us before the transplant there was only a 19% chance it would work. But he got out, he was doing all these things, it was amazing. He was still on low flow oxygen, but then he went back in and all of a sudden, like his kidneys, his bladder, his lungs, all of it just went to crap. Um, so I was told on Wednesday, April 17th, I'm sorry. And at that point, they were like, Yeah, he's got a lot of things, but we'll just see. We just need time because a dental transplant took 60 days for them to take. Again, I think it was because we was we were so young. It was, of course, he's gonna live. He's gonna get through this. This is gonna be a bigger stepping stone than we thought. But I was pricing, you know, walkers for him. I was planning on more in home services, different things like that. So I really did think that he was gonna get better. And I don't think that it was that the medical staff wasn't transparent, it's just that he decompensated way quicker than anyone could have imagined. So you were very young when you lost your husband. I yeah, I turned 31 on April 19th, and then I took him off life support on April 21st.
SPEAKER_00:Walk us through that process.
SPEAKER_01:Yeah, so I really didn't think he was gonna die. And it's like all these years later, when I talk about this, it's like, was I a numb? Like, was I just was my head in the clouds? And I really I love that term. I really don't think so. I think that I was just running on the positivity good ship lollipop because I had to. It was a survival thing, I think. Yeah, for sure. But I got a phone call. He was on, like, he said, I feel like I'm wearing one of those World War II masks. So he said, I love you back and forth on the phone three times. I didn't know that was the last time I was gonna talk to him. So I get there, they've innovated him, he's freaking out. So my dad and I are holding either of his hands. I say, please just like knock him out, put them on the highest whatever. So they do, and then I'm told I'm sorry by several doctors. They say, Well, wait till Friday, and I think, well, hell, Friday's my birthday. This is gonna be great every year. So then I stay in a hotel across the street. Um, on my birthday, my parents make me go home. They have, I love Hello Kitty. They have a Hello Kitty birthday cake for me. I have a little cake and I just pass out. So then the next day, my dad spent the last two nights of Grayson's life at his bedside. By like Saturday, they had to pull like two liter full of fluid out of his lungs or abdomen or something. Uh I'm the power of attorney. They're calling me to okay all these different things. And then I make a heaven playlist on Saturday night at home because I just instinctually know he's gonna die. They say we'll make the call on Sunday. I get there. One of the hardest things I've had to do in my life is so my dad comes down after spending the night to the waiting van outside when my mom and I get there. He takes the van home and the doctor sits down next to me and says, Rachel, buddy, today's the day. And the hardest thing is I have to call my dad, who's been like the last one with all the hope, and say, You need to come back. Um, because he had been there. He would come sit with him at like he'd be there at like seven in the morning, and my husband would wake up and like in the dark, there's your dad drinking coffee. Cause he just knew, you know, you want family, you want comfort, you want someone there. So my parents really became his parents, were his mom and stepdad were not positive, participatory who you would want their people. So my parents became his real, genuine parents. They lived with us 18 months out of those 27 months. And at first I was like, I don't want my dad to fooled my other. I don't want my mom up in my business, but it wasn't, it was incredible. So when I got there, you know, I said, Are you sure? Is there anything else? I ran out in the hallway and asked him that, and he's like, No, there's really not. And I give the doctor a big hug and we called our pastor, and of course it's Sunday, so we have to wait till you know after the service, and they have me sign off on no more nutrition, no more water. Um, he was incredible in that he'd have extra spinal taps and bone rob biopsies and stuff just for research for this clinical trial, and he'd be like, Yeah, well, you were at work today, like 13 students stood at my naked back with my butt crack hanging out while he's not gonna help people. Like, he just had the best sense of humor. We both just had amazing humor. Like, I would always say, like, yeah, had to be fancy, you know, whenever he got hospitalized or these different things. Um, so he, besides all the extra medical stuff he did, he was gonna donate his body to the University of Minnesota. So I'm just feeling it was really weird. I just had so much serene calmness and peace from that first day where they told me I'm sorry. I credit it to like God's grace and what I didn't realize until years later, or even months later, um, I think the piece was that I was able to be with him. I saw his bot body fall apart, I saw why it happened, I saw that cancer is the devil, but it also brought me two and a half years with my husband that I would not have had otherwise because he works nights, we had so much time together, we had movie nights, we had fun, we had laughter, we had tears, we had awfulness, but it was beautiful. And had he not had the treatments and the wonderful family of medical staff, we wouldn't have had that. So I'm seeing all that, but I'm also seeing his body's up in the hoyer lift and they're cleaning up and I'm looking up, and it's like this guy that's 6'2, and his head's dangling over one side and his legs are dangling over the other. I'm like, this is not him. No, no, like how did this happen? This is not him. It's like when you get buckled on the roller coaster and you can't get off. They put the bar down and it was just like this is happening. Um, and I embraced it, and I was just so incredibly filled with pride, almost like this light shining inside that he was gonna donate his body to help other people that he was living on in that way. Um, so the pastor came, they did the last rites of passage, and then I had his mom, his aunt, his sister, his stepdad, and my mom and dad each listen to his heart and say their individual goodbye. And then I crawled in bed with him. And his physician's assistant, she said, Give me your phone, let me take a picture. And I was like, She is insane. And she said, You're gonna want pictures of this later. It will help you make sense of things. So she takes his picture, and then um I play the heaven playlist and wait about an hour and his heart stops, and then I just leave because I'm it's not him anymore. On a more happy note, um he loved New Order and Joy Division and the cure and all of that. I covered him up after he had died, and then I grabbed like the at the time we had the iPod doc. I don't know if you remember those. We don't have to have those anymore, but um I gathered everything up and I uncovered him, played Joy Division, Love Will Tear Us Apart, which was his favorite song, did a little dance for 15 seconds and said, You wanted to beat cancer, and you did. It was because it was the side effects that killed him. Um, and then covered him back up and left. I just felt so, so much peace and all right, he's not here. I gave him an amazing life. He gave me an amazing life, and now what? So I left and then went home and it snowed the next day. There had been a blizzard, which was really weird on like April 18th. Um, and I love snow, and I just woke up and I was like, okay, I know you're here. So then I just went forward with my life trying to figure it all out, falling on my face many times before figuring it all out.
SPEAKER_00:Thank you so much for sharing that process because I know for me, for a period of time, I was wondering like, how is this going to end? I think oftentimes is a big question mark. And also when the time came, I felt very conflicted about it because my dad was on hospice, and similar to your late husband, he didn't die from cancer. It was basically his body was shutting down because he could no longer eat, and so he wasn't getting the nutrients that he needed, his organs were shutting down, right? So sure. Um, so I had this weird experience of at some point during his hospice care at home basically starting to administer morphing to him, and that felt like it was the decision to say goodbye, in a sense, because if we started, there's absolutely no turning back from this point. So that was a very conflicting experience for me because I felt like, am I letting him go prematurely? Like, should we continue this? But then there was also the side that was like, no, he suffered long enough. Like, we need to help him move on at this point. So thank you for sharing that. I mean, it sounded like for you, you knew it was coming. Would you say that it wasn't as conflicting as you maybe thought it would be at that moment? Oh, for sure.
SPEAKER_01:And I I mean, I really thought, we're so young, this can't happen to us. We're perfect, we've had an amazing marriage, this can't happen to us. And again, until five days before, I don't think anyone really believed he would die, even the doctors. Well, they probably knew, but didn't tell us. But and not that that's a bad thing because they were, you know, we're gonna go day to day, we'll see. But I think what's very different about blood cancer is there are not stages. So because there aren't stages, I think there's less awareness of how bad it is. That's the really tricky thing that's different. And we were told right at the beginning, too, of all the different kinds of cancers you can get, this is a quote unquote good cancer because it's easier to treat, it's more, you know, targeted treatments, different things like that. It doesn't metastasize. Of course, it controls your entire body, which is awful. Right. Um, gets all your blood, but it it doesn't have the ability to move from one organ to another, to another. So I think in this instance, we were more in the dark because there aren't stages you don't have that knowledge. I didn't learn until all these years later how different it is because people say, Oh, well, what stage was there?
SPEAKER_00:Yeah, that makes sense. Um, picking up then from your point, right? Now what? Definitely closing a chapter in a way, but also not because the grief continues. Um, and as you were just saying, like even just a couple weeks ago, right? Some of that came back when you were donating platelets and it really hit you.
SPEAKER_01:Yeah, it's so after he died, it was like, okay, he died, and now I have to plan a memorial service. So I go to the church that's literally like three houses down from us, our church, and I'm sitting on the room with the pastor, and it's like this gold lame kind of couch, and I'm thinking, you know, Gladys and Stewart or whoever have sat here when their elderly spouse died. Now I'm a W-I-D-O-W and I'm so young. This is so weird. And I'm planning like to have everybody wear bright colored clothes. We had a slideshow, I played New Order. It was very I Bruce Springsteen's my boyfriend. He doesn't know, but but I wanted Jesus as an only son, played it. Um my memorial service, someday I wanted Moby song played. So I played those things, and it was just really funny because the pastor, he's like, okay, and then we have the traditional Lutheran service. And I was thinking, what? This is just, I just wanted A and B, but okay, I guess we got another seat. So it was just, it was really weird because it's like walking down the aisle with his best friend and everybody's staring at you. So it's like a wedding of sorts. So once all the palm and circumstance of that was over, it was just incredible how much I slept because I was a hamster that had been on a wheel for years and someone took the wheel away. So it was very weird to not have to know about his hemoglobin or his blood pressure or all these different things. And then it was kind of really sad and devastating to a point of the whole medical staff, the nurses, even the person that took your check card at the cafeteria that you knew about them in school and their kids and the parking cast girl you talked to while you're waiting for your house. All these people are gone. Right. So it's like, okay, well, now I guess I'm back to my what is my normal. So it's literally, I was wife, now widow, now what? So I went to Alaska for 17 days, a couple months after he died, had my own little healing adventure, which was amazing because you really feel like the size of a pee when you're around mountains and you know, you see the sea otters and all these things and glaciers. It kind of slacked you into perspective a little bit. Yes. And then I had a hysterectomy in September, and I was blessed to have some money from a life insurance policy. Uh that we'd taken out years before. So I didn't work for nine months. And I understand that that's a luxury a lot of people do not have. I was very blessed to have that. A lot of it was used for obviously the mental healing, but the physical healing. That took a long time. And then in February of 2014, I thought, you know what? It's so hard to figure out what to do when you're going through something. Number one, you're like, I don't want them to die when they're diagnosed. Number two, I need to get the medical treatment. Number three, how are we going to pay for it with insurance? And number four, I need time off of work. How am I going to make all this work? So I decided to put the Caring Bridge post and the Facebook post all in chronological order and make a book with all the tools. But once I started putting those posts in order, it just became this is winter, spring 2014. It just became really painful. I was reliving it and I just so in those years, I work three part-time jobs with disabled children and adults. I'm running ragged. I can barely afford my house. I'm unsuccessfully dating. I am learning a lot about myself. It's just, it was just kind of a crap show. But what I learned years later, I was in a widow fog. I was surviving. I was doing the best that I could, which I give myself a lot of grace now, at realizing what it was. And then in the fall of 2015, I got a new job at a behavioral health insurance company. So for a living, I connect people to counseling. I think everybody should go. I do. Um so then the lo and behold, the guy in the cubicle next to me, that's 11 years older than me, has a four-year-old. And then fast forward a year after that, we got married. Um, so in the fall of 2018, I just started writing and writing and writing. And I would write for six or eight hours and cry for 20 minutes. And it was just a labor of love and PTSD. But I literally have when I am navigating diagnosis, treatment, what to ask the doctor, um, how to figure out health insurance, what's a deductible, what's a copay, what are you responsible for? Can you go back to work? If you go back to work, can you work full-time? Do you need disability requirements for physical things? Asking for help, how to ask for help, because people are going to be like, oh, how can I help you? And you're like, you don't have the brain space, right?
unknown:Yeah.
SPEAKER_01:Um, so I have all of that. And then after um your person dies, I have how to plan a memorial service or funeral, how to do it on the cheap, how to adapt holidays, birthdays, anniversaries, how to ask for support, how to suck it up and say, please help me. Um, so I walk you through my love story with a toolbox of how to equip yourself. So whether you're the patient, the significant other, the family member, or just a supporter or just a person that wants to help someone or know what the world is like, this is the first of its kind that gives you all those tools with links and how to do it. So I'm pretty stoked on how to help people because I was just a hot mess that felt so alone and just at the depths of despair. And I've put anything and everything I can think of to help someone through that. And it doesn't have to be cancer, any illness, COVID, whatnot. Um, my brother, who's the oldest out of the four of us, nearly died. He was seconds from dying in the ICU around Christmas time from COVID. And there's so many people who have lost people that need these tools that when you are overwhelmed and the illness starts, or God forbid someone dies, you don't know how to navigate the finances, all these things. I walk you through all of it. So I'm pretty excited to share it with everybody.
SPEAKER_00:Yeah, that sounds like a really incredible resource. I was just thinking, like, oh man, now Rachel's got to add a special chapter for COVID considerations. But but um what do you think? Because you said you started writing it and it was too much. And then how did you think the second time was different and you were able to actually get through it?
SPEAKER_01:I purposely spaced myself from the cancer and the grief and lost worlds. It's interesting because now I volunteer for like a caregiver group and all kinds of different things and write articles for different organizations, which you can find on Wife Widow Netwood on Facebook. And I've been asked, like, how many funerals did you go to, or how many, whatever, and zero. I went to my husband's and that was it. I purposely distanced myself from it. I would see, um, you know, I had a really hard time with social media. There were, it was like my husband's dead, I don't have a uterus. I do not want to see your pretty family and all of your babies. So it's like you go through getting off of social media, doing what's right for you at the time. I think, you know, watching uh even now, all these years later, when I see, oh, that movie looks good on Prime or Netflix or Hulu, and then you look at it, and the synopsis is someone's ill or dies or has cancer. I'm like, no, you know, we get to choose what we expose ourselves to. So I did that, and within that, I just backed away. So I gave myself the space and the grace to exit that part of my life. His birthday was on Halloween, so Halloween's always kind of a little bit of a sting. Um, it's less, but like I completely freaked out on Halloween when I was 37. And I started getting really sad and crying around 9 a.m. And it took me till 3 or 4 p.m. to realize I was surpassing him in age. He died when he was 37. Um, so triggers little things come up every now and then, but I think I really just had to get to a space where it didn't hurt, where I saw more of this is really gonna hurt me and be awful and drag me. I liken it too when you see it in a movie where someone, their leg is connected to some rope that's connected to a car and they get dragged really far or whatever. Writing it lots of the time felt like that, but I knew the end outcome would help other people. So that it was all worth it. So I did it to help other people. It was cathartic in that it pushed me farther and farther and farther away from myself to the point where it's hard to believe that that was me. And I've cried for the girl that went through that, and it blows my mind that it that girl is me.
SPEAKER_00:Thank you for doing that for others. Thank you. Writing can be such a cathartic experience because it helps you organize the experience and the meaning it has for you, and it's also a very powerful way, I think, for people to move forward.
SPEAKER_01:Yeah, it's all out there. Like the part I said about him being in the Hoyer lift and looking up, and that's not him anymore. Those were all things I saw that were such a part of my memory that I didn't want my siblings to know. I didn't want all these people that loved him to know. And once I got it out, it was just so powerful because I wasn't alone with it in my head.
SPEAKER_00:Mm-hmm.
SPEAKER_01:Yeah. Where can listeners find your book? Yeah. So Wife Widow Now is exclusively on Amazon. So you can get it in paperback where you can actually like fill out the budget sheet, or you can buy it on ebook version, and there's actually all these hyperlinks. So like cancer organizations, wigs, um, gas cards, finances, different cancer groups per your need. I have all those specific things you can click on and it will take you to it.
SPEAKER_00:That's so awesome. I'm gonna check it out. Any other last words you want to share with the listener before we wrap?
SPEAKER_01:Yeah, you know, cancer really does suck, but what's amazing is in most people's circumstances, I hope there are gonna be some silver linings in it, whether you were the caregiver or either a person that's going through it. People used to put it all on the line to go to Alaska and pan for gold back in those Yukon Klondike days. And more than likely, you're getting gold nuggets of what you're going through that will help somebody else. Or you may have a new career or volunteering or whatever that is. And certainly, I do believe cancer is the devil. I wish I could take away my husband's pain, all those things. Of course, I wish that he didn't have to die. However, it's made me a better person forever for going through that, going through that with him and taking care of him. That's my number one greatest accomplishment in my life. Just know that you're not alone. So many people are going through it, and so many people like Serena and I want to help you to not feel alone. And I really hope that you access whether it's my book or support groups or whatnot that's out there because there are people who definitely want to help you. But you're really not alone, and there are so many people out there that have a story, have similarities, and want to hear what you have to say because your voice really does matter.
SPEAKER_00:Well, thank you so much for taking a bit of your time to share your journey with us today.
SPEAKER_01:Thank you so much.
SPEAKER_00:I appreciate being here. We cover so much ground in this conversation with Rachel, from the initial diagnosis all the way to forging a new life years after her late husband passed. I know the topic of end of life can be so overwhelming for many, and I totally understand why, but for those who have to face it, a resource like Rachel's book can be incredibly helpful. Over the past four years, I've thought a lot about my dad's end-of-life process, and have come to the same conclusion as Rachel, that I was able to find peace when my dad died, because I knew my mom and I did everything we could in respect of his wishes all along the way. In my mind, that counts way more than how we say goodbye in the end. I was rooting for the Rachel from eight years ago when she was dancing to Joy Division and telling Grayson that he had beet cancer, unbeknownst to her at the time. She would also eventually beat cancer, although not without some twists and turns. And that's a wrap for today. Please consider following the podcast if these stories are helping you deal with your cancer experience. Also, I very much welcome any feedback and suggestions you may have for the show. You can contact me at infotalkaboutcancerpodcast.com or find me on most major social media platforms. Thank you for listening.