Grieving Voices

Rachel Engstrom | Life as a Cancer Wife, Widow, & Never a Mother-to-Be

August 24, 2021 Victoria V | Rachel Engstrom Season 2 Episode 61
Grieving Voices
Rachel Engstrom | Life as a Cancer Wife, Widow, & Never a Mother-to-Be
Show Notes Transcript

Eight years following the death of her husband from acute lymphoblastic leukemia, Rachel reminisces on the love she lost and also the pain and lessons that came from his death as well.

Rachel found purpose through her pain in writing about her experience, which later became her book, and also through cancer advocacy.

In this episode, she shares the story of her husband's diagnosis and death two years later, as well as how she found her way to feeling better.

On top of the loss of her spouse, she would later have to come to terms with the fact that she will never have biological children and, also experienced a health setback herself, later being diagnosed with a disease of the colon.

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Victoria Volk  00:00
Thank you for tuning in to grieving voices. This is your host Victoria Volk, and today I have Rachel Engstrom with me, she is has a masters of social work. She is a certified health education specialist and has written a groundbreaking memoir self help book on her experience as a young cancer wife than widow with the increasing number of young women and men becoming widows or widowers due to not only cancer and serious illnesses, but also now COVID-19. This resource is needed more than ever, Rachel shares her journey in a raw and honest way while providing step by step resources to help you navigate your own journey. Never before has there been a combination of the personal grit of the healthcare journey, along with steps and how to navigate treatment diagnosis, the ins and outs of hospital life, employment, finances, insurance, self care, grief and loss, and much more. You can find wife, widow now what how I navigated the cancer world and how you can too, on Amazon, which will be linked in the show notes. Thank you so much, Rachel, for being here.

Rachel Engstrom  01:12
Thank you for having me.

Victoria Volk  01:14
So let's talk about the birth of your book. And really how this probably what started out as a passion project was which was your life unfolding? How? Where does your Where does your story begin?

Rachel Engstrom  01:29
I am about to be 39. And I moved here I'm in the Minneapolis St. Paul area I moved here in 2000. So almost 21 years ago, to go to the University of Minnesota. And in myself, I moved here not knowing one person, no family, anyone was here that I knew. And in my sophomore year, first semester, I went to a birthday party. And a friend of mine it was she was having a party for her boyfriend and his friend from work came. So this tall guy who's six, two, who's, you know, almost seven years older than me showed up. And I just thought that he was really cute and nice and you know inquired about him to the friends the next day. And he did the same about me. And we dated for three years. And then when I graduated from college, three months after that, I got my first job right away. And then I got married at 22. And he was about to be 28. And then so he worked nights the whole time we were together. So that was pretty cool. I mean, I missed him a lot. But that was pretty cool. And that I was able to become my own independent adult person within my 20s and still have that relationship and that consistency in my life of being with him. And then when I was 28, and he was about to be arxys. I was 28 and he was 35. He just really didn't feel well one day and went to the doctors that turned in to go to the hospital for blood transfusions turned into go to this clinic. They didn't tell us it was a cancer clinic that he was mis diagnosed with something and then the next day had a bone marrow biopsy and two days later, he's diagnosed with acute lymphoblastic leukemia. So at age 28, I'm already grappling with a few months before that learning that I have endometriosis cyst, whatnot that had ruptured on my reproductive organs. I'm grieving that I might not be able to have children, things like that. And then this couples with that, and I have to very, very quickly learn how to navigate the serious illness, world insurance, disability, all these things, which is why you list that all of that, along with having this cancer life become my norm. So I'm working eight hours running back home to let the dog out, then running the hospital for a few hours then running back home, you know, petting the animals trying to pay attention to them for 20 minutes before I you know, pass out, rinse and repeat the next day. So that was quite a lot. So that was my life. I did have a lot of support from my parents who are in a different state. They came and lived with us for 18 out of the 27 months that my husband was sick and he got a lot better and then relapsed, unfortunately, a year and a half after his initial diagnosis. So we had to hospitalized him after he relapsed on the day of our eighth wedding anniversary. And what was interesting is going back a year when he in so he got sick in January of 2011. He had a fever and had to be hospitalized in August of 2011. And one of the nurses said, Oh my gosh, you guys are still together. I can't believe you're together. This is amazing. And I was like what are you talking about? And she told me that during cancer and serious illnesses, that in her experience of 25 plus years she'd seen 70% of more people come back that needed medical care that their significant others left them, or the marriages didn't work her out or things like that. And that just totally blew my mind because we had we knew very quickly on that this is scary, you know, of course we're hoping he's not going to die, but that we're in this together we can't afford to fight or you know, disagree that much or those types of things because this is such a serious thing. So in January of 2013, he had a bone marrow biopsy or excuse me, he had a bone marrow transplant. days after I had a surgery for endometriosis. And he had had a lot of chemo and radiation to prepare his body, when you have a bone marrow transplant, they have to wipe out your entire immune system. Like you're a newborn baby to take these stem cells from umbilical cords, that was his donor. And just the chemo, the radiation, all those side effects ultimately ripped up and shredded his kidneys, his bladder, lungs, things like that. So he was in the ICU once, you know, it was preparing for him to die miraculously, within a two week turnaround, he was out of the ICU out of the hospital in a rehab, was learning to walk again, do all those kinds of things. And then he went for an appointment and things kind of went downhill. And then on April 17, I was told, I got a call early in the morning, and he said I can't breathe, I can't breathe. And he had been on regular like oxygen. But they needed to put them on high flow oxygen. He just he wasn't breathing well through the night. And then they called me and said he needed to be integrated. And he got on the phone and he said I love you to each other three times. And then when I got to the hospital, he was kind of freaking out. And I asked them to give them a high dose of pain medicine. So it would just knock them out. And then once he was comfortable, I was sitting in this chair and I had three doctors come and tell me I'm sorry. And they said we'll decide within 48 hours, you know, when's the appropriate time basically to take them off life support. And two days later, when we're going to do this is my 31st birthday. And two days after that, so then they said okay, well wait another 48 hours, but I just knew within that he was gone. It wasn't even him anymore. You know, he's just seeing him slip away. And what was amazing is what carried me through significantly was my my faith, my faith in God and all of those things. But I just had so much peace and so much grace within it, I was just very numb to all of it. And I believe that, you know, the biggest factor was my faith for feeling that way. But what I learned later learned later, when I was trying to be in learn more and being young widow groups and things like that. What I was seeing that I didn't quite realize is I had I was given so much grace and that I was able to be with him as he was dying. So many people have their significant others die at war, or you know, a freak accident at work or those types of things, I was actually able to be with him. So on the 21st I signed the papers and everything. He was so amazing. He did extra bone marrow biopsies and spinal taps and things like that, for research at the University of Minnesota. So I signed the papers that morning for him to donate his body to the University of Minnesota, which is what he wanted to do. And then called our Mr. It's Sunday's of using church then we had to wait for him to come and then had the few family members that were there say bye. And that I had made a heaven playlist the night before because I knew that he was going to die the next day. And I had them unplug him, we cleaned up his face a little bit. And then I played a playlist and help my husband, my life. My best friend, everything that I knew is I waited for his heart to stop. So I was two days after I turned 31. And then I walked out of the room and I was Rachel 2.0 I was a widow. So I just I had to restart. And I had to reboot my life literally like a computer. Because I had been thinking I was going to have you know, little feet running around the house that are half me half him, I'm going to have someone help me pay for this house. We're going to go on trips, we're going to do all of these things. So I had to figure out how to navigate all of it. The cancer part was hard enough, but this was navigating all of it. And especially with being a 28 year old cancer wife is hard. But being a 31 year old widow is insanely hard because you don't know anyone else in your circle of people going through that. So ultimately that led me to the idea of writing a book so my book wife widow now what is chronological order of my caringbridge Medical posts that got emailed out to everybody my Facebook post. And so it's my narrative between all these real time posts. So when I'm figuring Insurance I walk you through bam bam bam This is how you do it this is diagnosis treatment work when people want to help these are tangible ways to tell them they can help getting counseling for yourself getting counseling for the patient ways to adapt to your house you know I had no idea I'd be 28 and be needing to get you know, a shower chair and all these things and so basically my book is a love story but the tips and the tricks of how I navigated all the illness part and then how I navigated all the widow part the anniversaries, the holidays, all those first all those feelings, and it's very gritty in that I don't it's beautiful, but I don't sugarcoat anything you know when I one day I may be like, oh Today's a great day and the next day I'm like again so grueling. So it's really unique and that this is the first of its kind memoir self help how to merge the narrative and the realness of the journey with the medical aspect of how you do both so I put all that together and it was very much a labor of love and a lot of PTSD but I'm really proud to have it out there's there's nothing like this to help people navigate it.

Victoria Volk  11:13
it's a lot yeah thank you. So how many years ago was this now?

Rachel Engstrom  11:16
April 21st will be eight years

Victoria Volk  11:19
what is life been like since  

Rachel Engstrom  11:22
so it was really hard. It was really hard at first just for fun just for kicks I took classes to get a certification and grief counseling because I wanted to know about grief the process all of those things learning about you know ambiguous loss of suicide and you know all the different kinds of grief what people go through my bachelor's degree is in anthropology so just culturally, it was fascinating because I was part of this culture I knew nothing about it's like literally being dropped out of an airplane into a foreign country you don't speak the language you don't know anybody you don't know where you are you have to start over it was it was really really difficult working three part time jobs to try to pay for house like I said, I thought I'd have someone helped me with lost a lot of friends not because people didn't care but I think they didn't know how to adequately help and kind of like you have you know, when you have a job, you have your work family of friends there and then you leave and then you're like, Oh, you know, I don't really talk to them that much anymore. The really hard part is about going through something that's catastrophic is your friendships, your relationships have been flow and change that way as well. I purposely with a lot of intent, stepped away from the cancer world, the illness world, all of that for years, because it was just too close too hard. You know, there were movies that came out like I remember like a fault in our stars, a couple different ones where people were like Rachel do not watch those do not even don't even touch it. Those things are really difficult. My brother who's 14 years older than Wayne told me in the very beginning when he came right before Grayson got sick or excuse me when he got sick, you know, you you can choose to be better or better. And I wasn't always better. I have a chapter called bitter Betty. But within that I had I had to I didn't have anyone else that I was responsible for besides my pets, besides me, so I had to know that Like it or not, I had to reboot This was my new life. And within that I chose to surround myself with positive people. I had a couple of very long term friendships that ended up not appropriately supporting me and being very judgmental and toxic that I had to cut out of my life. Just a lot of growing pains of being this new person this new role this not definitely not asked for a role. So navigating all that was really tough navigating just having enough money to afford the house and everything that was just insanely tiring I worked for a year and a half I worked three part time jobs to with autistic children, one with the lady with multiple sclerosis, running all across the Twin Cities and be like five or 600 miles a week navigating all of that I forgot to say six months after my husband died, I had had so much pain I could barely walk so I had a hysterectomy so then I gave up the ability to have kids which was another huge loss. But then you know later on victoriously I'm in target walking past like the tampon aisle and just like so excited. You know, it's the little wins. But three months after he died I actually went to Alaska for almost three weeks by myself took a cruise was always like, you know, I've seen the Titanic. Tell me which well I well you know that they're safe these days. I will never go on one. But I also didn't think that I would be a widow at 31 either. So I gave myself space and time to see nature all these places you can only get to by boat plane Things like that. So it was a lot of a lot of trial and error. Over the years, I had met my husband when I was 19. So dating again in my 30s wasn't sane, I got her, I got my heart broken, I was naive, I was stupid. I didn't make the smartest choices sometimes. But I was I was just believing the whole time that God had a plan and like footprints, I wasn't going to be dropped, you know, the second set of footprints in the sand. And that's ultimately what carried me through and then also finding out surrounding myself not only with appropriate people, but you know, funny TV shows uplifting music, things like that, because there are a lot of really sad things out there. I didn't always Excel taking care of myself. So those are some learning points. You know, when your spouse dies, you don't want to sit around and eat salads, you want to eat cake, you want to eat pizza, you want to eat things that necessarily don't fill you up with endorphins that make you more sluggish. But you do what you need to do. So in time, things got a lot better. And I don't really speak about love life or anything except in my book. That's my one disclaimer, you have to you have to read it because it's at the end of the book, that's kind of my happy ending. But what's truly incredible to me is where I am in my life now. I'm, I have Besides, it's hard to articulate this sometimes without feeling like offending people. But it's true, like losing your parent, losing your sibling losing your grandparent, those things are so hard, they're so hard. But the only thing I could equate with losing a spouse to would be how I can't imagine losing a child. But losing a spouse is definitely not planned, especially as young as you know, I was 31 he was 37 so it's very, very tricky to find adequate support and those types of things because when people say oh, my mom died or my my whoever died I I understand you don't understand you really don't understand it's a different kind of grief. It's more complicated. It's the person that was in your house every day. You know, even a year after he died, I would look at the door and expect him to walk through it. All those types of things. So what's incredible to me is that I went from being the saddest of the sad not able to get out of bed. You know, my reproductive organs are have been taken out of me my my hope of being, you know, a mom and all these different things and my husband's gone and whatnot, that I went from there to writing a book, despite how painful it was writing a book and now speaking about the positive things I focused on the positive things you can focus on. It will be over by the time this is aired, but right now in the state of Minnesota, I am running for a woman of the year trying to raise $60,000 for blood cancer. leukemia Lymphoma Society did so much for me I did two half marathons walking them I'm not a runner, two half marathons walking that my dad won the year after he was diagnosed and one the year after he died, so in 2012 and 2014 and within that I found friends for life people that backed me people that supported me. And if I can get $50,000 I can get a grant and his name. And you know, I'm just I'm pumped to help people because as great as advancements are, every three minutes someone's diagnosed with blood cancer every nine minutes someone dies from blood cancer, one in five people are going to get cancer in their lifetime. 80 It's the number one childhood blood cancers, typically acute lymphoblastic leukemia, which is the type of leukemia my husband had, which usually children get or elderly people get 80% of childhood cancer survivors of this have catastrophic, like chronic health conditions, whether it be so my husband a year after he was diagnosed, he's 36 looks great, you know, full head of hair, he's super healthy. You know, no one knows he has cancer if you saw him, the steroids that he took for the first part of his treatment had rotted his hips to the point where there was a crack and it was the hip bone was falling out of the socket. So I have another friend that his son, or excuse me his that I met while my husband was actively dying. This person I met because he was he was so nice. It was a friend through a friend and he gave me money to stay in the hotel across the street because his wife had died five months before that, when his twins were three, and then three years ago when the twins were nine. I'm one of them got diagnosed with the kind of blood cancer. So this little he's lost his wife. Now one of his two sons has cancer and he's getting the little boy got really, really sick, his name's Jake, he's an insane warrior. Now he's fine, his treatments are done, but he's had to wear leg braces, because his legs are just his bones are you know, so there's so much that's amazing like the Leukemia Lymphoma Society has cutting edge research which actually informs other forms of cancer, their treatments and things are helping all forms of cancer. So it's not just blood cancer and trying to get funds for. But the side effects are awful. We can acutely treat them when they're happening and get you into remission, but the side effects are not quite there. So I feel really privileged and proud to be able to do this in honor of my late husband because he did these extra bone marrow biopsies donated his body to the University of Minnesota, he wanted to help people. So in a way I'm really proud to be able to have him live on through my story live on in this way. And this usually does not make me cry, but I'm just really excited. He would just be pumped to know that I've turned my life into advocacy in his honor. So that's where I'm at today.

Victoria Volk  21:06
How about you tells us a little bit about him. 

Rachel Engstrom  21:09
Oh, he was funny. So his name is Grayson and he was just like, gosh, golly, nice to the point where he'd say like, I'd hand them something and you'd say appreciate it. Maybe like what is so nice. He had he would ask the nurses like can I trouble you to get me something and they would like fall over laughing like it's our job of course we're going to help you. He loves New Order in the Pet Shop Boys and techno music and going with his best friend oh and for craft beers and discovering breweries and different things and from his best friend that I spent a lot of time with after that I was friends with anyway but spent a lot of time with after Grayson's death he's like he would just have any rolled his eyes when he told me he's like he would just talk about you all the time. It was just all the time and you know, we really were the best of friends and we had what I call Space Age marriage where we rarely ever fought granted we didn't really see each other Monday through Friday because he was working. But you know, when we did have arguments, it was over piddly stupid stuff and I was in my 20s having those growing pains and whatnot and as he works nights you know we didn't have a dishwasher in our little apartment and I would want him to wash his dishes but he couldn't wash them at night when he got home late at night because the kitchen was by the bedroom and it would have woken me up and then he was a serial procrastinator so he would be so tired he'd get up late you know work and then he'd get up at like one 130 then have to work at three so I just passively aggressively would stack those dishes on a cookie sheet because they were his but um he was just a joy he was a lot of fun everybody loved him the nurses told me they fought over him you know who that they had everybody's index cards and patients in the room who had who when they would fight over who got to take care of him and you know I would bring blankets and a lamp and you know different things to make the hospital room like a little home and they would say oh lovebirds are in their apartment and you know things like that so we just made the most of it and despite him being sick we actually were given the gift of time you know that we hadn't had our entire time together Monday through Sunday being able to spend time together and we'd have sleepovers and I'd be on my little hospital cot on the floor and he's you know two feet above me and we're holding hands you know watching movies and stuff like that but he was just a really good guy and I know that you know with from what I've learned, you know, different marriages, different things, different relationships. You don't always get to have that nice story and closure where there's a death You know, you're left with you know, what was or I wish I would have said or I wish you know, I did have what it could have shut us but not in big ways. Not in big ways. You know, I felt guilty for a couple years because while he was sick, he would always want me to come snuggle with him on the couch and I'd be across the room on the other couch just insanely tired, exhausted on the couch and not wanting to move he'd be like come snuggle and I'm like a little while last thing I want to do I'm so tired. So I feel bad because I'm like he wanted that and I could have done that. But besides that I really don't have any regrets. And you know, I asked him a couple days before he died. He was awake for a couple minutes just his eyes were barely open but you know, I knew it and we had a health care directive and everything but do you trust me? Do you understand what's going on? Do you understand what's going to have to happen and you know, he shook his head yes. And ultimately I was just prematurely obviously in my head I know that I'm you know, devastated. My world's been thrown a grenade but While I was while my mom and I are waiting in the snow for my dad to pick us up, after I've left the body of my husband upstairs at the hospital, I just have these immense feelings of relief, because he's not in this diabolical pain. He's not going through horrific things anymore. That wasn't really him anymore. Anyway, you know, it was just what was the it was unfortunately, like, you know, you change sounds like a really awful example. But you know, you when you get new carpet in your house, and you can go look at samples and there are those remnants, you know, he was remnants of who he was, that's what was left the last few days he had given it his all he had fought so hard. I had confirmed with the doctors many times, especially the day he died, you know, there's really nothing else they can do. And within that, I had the peace of knowing in the grand scheme of things. It didn't make sense why he had to die. But biologically, his body just gave out. And, you know, God loved them. He did the he did the most that he could, and the love that I had for him and that he had for me, ultimately helped set me on the path of who I am today.

Victoria Volk  26:12
Was hospice care, never talked about? 

Rachel Engstrom  26:16
No, because he was, um, so it wasn't a necessary thing to have because he was in the hospital. So he left our house on January 21. He died on April 21. So it literally 90 days, because it took 60 days for his stem cell transplant to take for the bone marrow transplant, and things like that. He was like in the cancer ward. So he had that high level of oncology care specific for what he was going through. So I mean, I was assuming I was pricing like walkers and stuff like that, you know, I was thinking because he'd been to rehab and things like that I was thinking that he was going to come home and I had someone asked me a couple weeks ago, on a different show, like Did you really think that he was going to be fine and get better? And I was? I said, Yeah. And she said Why? And I was because he we were so young. You know, when you're 31 and you're 37 you assume you know you are unbreakable, unbeatable. You feel like you're a superpower, you have the whole rest of your life in front of you. So I really did not I, when you're the caregiver, or the spouse, or the main person caring for someone you don't, at least in my opinion, you don't get the luxury of believing that your person is going to be anything but fine, because you're the cheerleader, you're the you know, manager, the captain, the rah rah, we can do this of the ship. So I really until they told me I'm sorry, on the 17th I really thought that he would make it. And then at that point, because he was in the ICU, that was the adequate care he needed to take care of him.

Victoria Volk  27:55
I had Dr. Chris Kerr is the author of death is but a dream. It's all about end of life experiences. And he has done extensive research on the subject. And he's part of that docu series on Netflix called surviving death. And Episode Five. And you might find that episode interesting just because he talks a lot about the medicalization of dying. Hmm. So that's why I was kind of curious on the hospice aspect of that. Sure. So what what are some of the things that I know you kind of spoke to like the some friendships fell away, which naturally, often happens with grief? But what are some of the things that were helpful to you, that people shared with you or said, and some of the hurtful things too?

Rachel Engstrom  28:46
Oh, yes. Well, I know how you feel is really hard. I had a lady that she was she was very sweet, very well intended. And she was a lady in her 60s, from church that helped do a fundraiser different things for me, but she would come and she, you know, I never let her in my house because I know she never really, she would stand on my porch and come and check on me and different things like that. And she kept telling me like, Oh, I know how it feels. I know what it is, you know, I've been there, done that. And she told me how she lost her mom. And she was saying she was a widow. And I'd be like, Oh my gosh, I'm so sorry, to the after like four or five of these visits. It turned out like she was like, Oh no, I'm married. It's just my husband volunteers at church so much. I feel like a widow and I was like, Oh, just like I just wanted to slam the door on her face. I think the toughest thing. I had someone really close to me in my life. Tell me after about six months, just just decide to be happy. Just like pick a day decide to be happy. I think it's really tough when people don't realize that grief doesn't have a start and end date. It's on your own timeline, especially with me Every buddy's grief journey is different. The circumstance of death is often very different. You know, you could put 10 people in a room and they all have different ways someone died. Mine, you know, being able to be there with him, like I said, For me made it a lot easier. And what was interesting is his, his pa is working, I think of it. What the acronym is, physician's assistant, who was was like junior doctor. She was the one that after he was unplugged, and everything, you know, I lay down next to him and covered, she covered us up and I'm, you know, I laid there and we did an hour for his heart to stop. She said, Give me your phone. I said, Why? And she said, Let me take a picture. And I said, No. And she said, Yeah, you're gonna want this. And she was right, because I wanted to look at these horrific pictures of what he looked like to really get and formulate, that's not him. He had to go. But yeah, it's, it was just really interesting to know and see what it was for me, versus what it was for other people. Being part of those widow widow groups online, different things like that. You know, it's, it just sounds. I'm having a hard time articulating this because it just sounds very odd. But like, there was a woman in the group that her husband, apparently she was like, barely five feet tall. Her husband came home from Afghanistan. And one day, her 10 year old son found him hanging in the garage. And because she was so short, and he was already like five, three at like 10 G. They were trying to get him down. So she had her 10 year old son cut down dad. And it's just there was someone else that it was her husband she knew he was really sad, but he she was like sitting on the front porch. And she'd been out there maybe like 510 minutes and her husband came out and said, Hey, come, you know, I'm going to take a nap come lay down with me on the bed, she found out. After laying down with him for like 20 minutes, she thought he was taking a nap underneath, like the pillow or something like that he had taken a whole bottle of pills. This is another soldier that came home. So he had died. And she had no warning and she knew nothing. So listening to those things, it made me feel better in people's grief. And that sounds awful. But it's like you compare your situations and those things that I just felt so extremely grateful to have been with him. And I mean, I had no words for these people. These are the most catastrophic, tragic, horrible things to happen. And when people are trying to tell you, you know, you need to be happier, you need to move on or you need to do this. There are a lot of people are really well intentioned, but they and they want to help and they don't know how to help. And that's what I'm trying to do with this book. Whether it's you or your family, or a friend or a friend of a friend or whatever, I have ways to talk to people ways to help people ways just to be more sensitive, because grief is such a taboo thing that so many people don't know how to talk about, I think the most helpful thing people did is just listen, be willing to listen. A few weeks after he died, I created a healing blog, which was like maybe 1/3 of the people that I had on Facebook where I would just kind of bleed on paper and write how I was feeling and be open and honest and I have all these posts as well in the book as they're happening in real time. For me, it was just really helpful to feel like I was getting it out getting it out to the world I wasn't holding on to it and just having people respond you know I'm here any time or you know, those types of things I initially thought of calling this book a few years ago and I thought of it how social media saved my life because it really is I mean even you know pre COVID we're all very isolated we're all very stuck to our phones and all of these different things but if you can feel that support those types of things, that was really helpful and it was really an eye write about this as well it was really hard for me to ask for help. You have a lot of pride and you know it's really tough but you're if you're the spouse, you're the you're the caretaker you're the team captain when your persons ill and you're taking care of it and you are glad to be giving updates and asking for help because you know you can only do so much later when it's you. I felt like a hamster that had lost my wheel but I was still running because I was so used to taking care of him and needed to know all these different things. So when it came to taking care of myself, it was a lot harder to ask for help and I ended up posting in this blog a few times like Will someone text me or call me or you know, someone came in took me for a walk? Yes, like a dog. Like she was like I left my dog inside and she was like Rachel, let's go for a walk. You know, put on your shoes Come on. So I think the biggest thing I had to learn the hard way is just asking for help and knowing that it's okay not to be able to do it all yourself. That's the thing about being a caregiver is you, a lot of people show their needs. I say, I think I was about 5050, I would go to a concert every now and then or a friend would come for a cup of coffee to the hospital or whatever. But it's really tough to realize, this is me now, nobody else is going to be able to do it. You know, you got to suck it up, you have to do it. And within doing that, ask for help. And like today, present day, I have alarms on my phone that I have set to check in with different people that are going through some tough things. So I don't forget, in my busy life, checking in with them, like I had people check in with me. So those are, I would say the biggest takeaways and things that were said that were helpful and that were not.

Victoria Volk  35:43
I like that last tip. So what is one tip that you would give? Well, I think there's a lot of tips actually rolled into that too, for other people hurting and going through something similar. What was the best piece of advice that someone? Well, you said your was your brother, like, right? Was your brother then told you to be better or better? 

Rachel Engstrom  36:06
Mm hmm.That was a really good one. Um, what was really helpful to me is I had an aunt Tell me, like when I was like six months out, so I would have this countdown, count up, I guess you could say, so each month after his death, like the the day, to the you know, every month after he died, so it's like may 21, June 21, I got more empowered and excited as the months would go by, because I would be just excited that I'm making it I'm surviving. And my aunt said something like, I was just like, Oh, you know, I wish I could speed this up to do that so hard. And she said, this is so fresh, you have to give yourself time. And I think people don't realize. So I'm eight years out. And on his death anniversary, I used to have like, my sisters get together or I'd go to a friend's house, like people that actually knew him, I would spend time, you know, go do something fun. This year. I'm just working. It's been eight years. It's, it's I'm very displaced from him in that within writing about it so many times. But I've worked really hard to get here. Of course, he's dear to my heart. The reason I'm doing all of these things, but I have successfully moved on. Of course, it's taken a ton of work to get here. But I think that just knowing that, you know doing things on your own timeline, doing what works for you, is the best thing. Sir. I remember watching friends, and Everybody Loves Raymond and Frasier and things like that, and just belly laughing and being like, I can have joy, like really, really realizing these things about yourself, creating these new traditions creating these new things. That's not, you know, the easiest thing to do, but, but doing that is great, because when you are six months, one year, two years, that's still really fresh. And I think that having my aunt say that to me, let me know, every, every bit of laughter I had every like those were gems to put in my little bag of I'm making it I'm being successful, those things that it does take it's like a staircase that takes and you don't know where the top is, it's going into the clouds. So I think that hearing that little bit of wisdom helped me rephrase my urgency because you just want to get it over with you want to feel better, you want to zoom into this place. And that's not really a tangible thing.

Victoria Volk  38:41
I want to bring circle kind of circle back to like all these the different losses that you had mentioned earlier, and like the groups and stuff, and I think it's easy for people on the outside to make assumptions to that. It was a you know, it's a loving relationship, right? That Yeah, whomever you lost was a loving relationship, but I just want to feel the need to bring up that sometimes that's not the case. And so especially if you're someone that is going to say something like, let's see, for example, they're in a better place now. Yeah. I mean, just some of the things that people say it's like, well, you know, you don't even know, we don't know what the intricacies of the relationships are like, right? We don't know, behind closed doors, what how the relationship really truly was, we know people for the for what they show us, right? And so I just, I don't know, I felt the need to bring that up that sometimes you can lose a spouse but it might not have been a loving relationship. They might be relieved, because they were being abused. Right. You know, so I just wanted to bring that to attention. I just felt like I had to I don't know why. Yeah, no, it's very true. So I mean, it sounds Like, grief has taught you a lot as it does for all of us. Even me, 30 years out 30 plus years out of my own losses, what gives you the most joy, though today? 

Rachel Engstrom  40:16
That's a loaded question. Well, my faith, my faith and knowing that I went through the toughest thing possible. And not that I want more, I'm hoping that, you know, like Sam about to be 39 I'm hoping that the bad stuff happened when I was younger, knock on wood on my fake wood dust here. But that, not that I want bad things to happen, but I'm like, Here I am, hear me roar. I've been through the worst thing ever. And since I've been through that, I know that I can get other through other things as well, you know, I had, I was eating like ice cream before bed, like, almost every night for a couple weeks, like a couple years ago. And I was sweating at night. And I didn't know the correlation between like your sugar levels, and you know, then you cover up with covers that, that if you have that before you go to bed, it will make you sweat. And sweating at night is one of the signs of leukemia. So, you know, I'm panicking, like, oh, we're going through cancer, and I'm going to the doctor, because it's all these things that you know, from being there. And just knowing that you need to take everything, as it is, as the day, things totally changed. God says, you know, if you make plans, you laughs that those plans, you really can't pre plan too far ahead. I think that that brings me a lot of joy of living in the moment, being there for what's going on. You know, I'm a planner, but being able to step back and, you know, check myself on that. Five and a half years ago, I started a job but a new place that launched a new life for me. And two weeks after I started, I had dental surgery took antibiotics that ripped up my GI tract, and I had that I was diagnosed with IBS and a colon disease. Awful as that was because I was very sick for a couple years. I've become an amazing chef and Baker. I was good before. So that makes me really happy. Sometimes it's really annoying because I have to make everything from scratch. But I really enjoy baking I really enjoyed cooking here in Minnesota was 80 of other day it's been raining, but you know, I'm trying to get out and hike and do those things. And physically, I can't do as much as I could with digestive things. And I still have endometriosis because I still kept one ovary. But you know, getting out, being outside, walking my dog, the same dog that she's 10 she just turned 10 that's been with me I talked about in my book since we got her as a rescue puppy. At four months old, my when my husband was first sick, all these little regular normal parts of life just make me really happy. And knowing that, you know, whatever happens, however, you know, I will gladly take IBS, Nicole and disease because I've seen the cancer world I've been in the hospital, I've seen it all. Being able to I feel like I just have this wealth of knowledge and experience of I've seen the worst, I've had the worst thing happen and knowing that whatever may come is as much as I hate the cliche, like it couldn't be worse, it really could. And what brings me joy is to know that the experience that I have can truly connect me with people to tell them I am so sorry, it doesn't make it easier, doesn't make it prettier, doesn't make it more fair, what you're going through, it's so tough. And I really I've been there. And you know, within this book, I just want to get it into millions of hands. Because when you're in it, you really do you feel alone, you really do feel isolated. And you know, I'm just really proud of this book, by the grace of God to be able to give people some tips and tools on how to navigate it. And you can see, you know, I have this amazing love of my life and my life went Oh, and then it took a while but it went back up and now I'm I'm just excited to help advocate and tell people, I went through it, I'm okay. And you'll be okay too.

Victoria Volk  44:21
Is that what you would like to scream to the world?  

Rachel Engstrom  44:25
 Yes.  

Victoria Volk  44:26
That was what that's you know, really the premise of my podcast and why I wanted to start it too is that the education piece that bring this topic to the forefront and talk about grief, like we talked about the weather make it just an open conversation that we feel we can have with each other and without criticism and analysis and judgment. And in that there's hope and that's why stories, you know, like yours and other guests that I have on my podcast. That's the whole point is to show that there is hope Is there anything else you would like to share? 

Rachel Engstrom  45:03
I don't think so. I feel like I've put a lot. There's a lot on the table for people to think about. There's a lot on your buffet.

 Victoria Volk  45:12
I think just their story people. That's I mean, that's how people see themselves is through other people's stories. And, you know, we all agree that 100% there is no half Grievers. And it doesn't matter what your losses it's, it is hurtful to you, regardless of what it is and what caused it. And it doesn't need to be a big t trauma loss to deeply impact you. And can we do can actually, can we speak to the whole because this isn't the whole point of you being on but I do feel it's a topic that actually as a topic has that has not been covered on my podcast, but knowing that you will not be a mother, how have you navigated that?

Rachel Engstrom  46:02
Yeah, um, so I actually looked into adoptions and different things like that. And it was just, I mean, it's, I feel like it sounds stupid, but the expense of it was something that I couldn't, I couldn't afford. And I'm, you know, I'm an aunt, I have four nieces, one of them just turned 15 other day, they're seven, almost 17 1511 and 11. And I actually was a professional nanny raising babies and things like that. You know, I see Gerber commercials, all that kind of stuff, it's tough, I had to take some time off social media because I'd seen people with their happy couples and babies and things like that when I was grieving so I think abstaining from those things, it's smart, because we all compare, you can't not compare. I do still to this day, sometimes grieve it a little bit. But I also know that the amount of time and energy that I'm putting into advocacy to help other people I wouldn't have that time if I had a child so this is my baby. Trying to help other people is is my baby so I'm okay with that.

Victoria Volk  47:13
And that's a beautiful reminder too that the fastest way to help ourselves heal is to put that put our energy to others to feel better probably the quickest turnaround you'll ever get to feeling better is to focus on others

Rachel Engstrom  47:31
yeah yeah

Victoria Volk  47:33
yeah. Thank you for sharing that. 

Rachel Engstrom  47:36
Thank you

Victoria Volk  47:37
Sorry, I put you on the spot it just is something. 

Rachel Engstrom  47:36
No no no it's okay. 

Victoria Volk  47:42
And I know I can imagine that people have said all kinds of things, well you can always adapt 

Rachel Engstrom  47:49
you can adopt and it's like I don't think people realize it's like minimum like $40,000 Yeah. And you know, I have several hundreds of dollars a month in student loans and you know, all these things it's just it's not easy and it's very I mean the mental health aspect it's very complicated as well with an adopted child and all of these things and I've already been through some really hard things so

Victoria Volk  48:15
Yeah, and I think to like people might assume if you don't have kids if you're of a certain age and you don't have kids we can make these assumptions of well either you can't or and if you choose not to whatever you know there's there's plenty of people out there that choose not to oh my gosh.

Rachel Engstrom  48:41
yeah, I've met a couple friends that don't and it's just it's a choice. 

Victoria Volk  48:45
and it almost seems more offensive to other people you know that you choose not to but yeah we project Don't we? We project do Yeah, yes, we're projecting society. But I hope that through just talking and having these conversations that we can just bring some compassion to and know and leave the assumptions at the door, right? Yeah. Thank you so much for sharing anything else you would like to share?

Rachel Engstrom  49:15
know so you can find wife widow now what? Victoria will have the links, but you can find it on Amazon and it's in paperback you can actually write in the budget sheet finances all these different things. Or if you get the ebook version, you can actually click on the hyperlinks they will take you to all the different websites to navigate what you need to and then you can find me why footer well, Rachel, wife widow now on Facebook and Instagram and you can ask me questions, anything you want, I'm open.

Victoria Volk  49:43
Alright, and I will put those links in the show notes and you know, the organization that you are currently raising money for that will be over probably by the time this airs, but I will still put the link for that. If you want.

Rachel Engstrom  49:57
Yeah, you can still donate. I'm very Very needed. 

Victoria Volk  50:01
All right. Well thank you so much for sharing your story

Rachel Engstrom  50:03
Thank you, thank you.

Victoria Volk  50:005
And remember, when you unleash your heart, you unleash your life. Much love