Rachel Engstrom’s book Wife Widow Now What? How I Navigated the Cancer World and How You Can Too is a life changer for those facing cancer, their caregivers and anyone else who wishes to strive for happiness and fulfillment despite tremendous hardships. Rachel was only twenty-eight years old when her thirty-five- year- old husband was diagnosed with cancer. She had to research and dig deep to find the resources that adequately met her needs regarding diagnosis and treatment decisions, time off from work, disability, navigating insurance, finding support groups, and locating resources to provide additional funding. It was through all this and more that Rachel became a resource who could connect others to those cancer resources as well. After her husband passed, Rachel moved herself forward from pain, suffering and intense grief to a successful new life filled with love and Rebirth.
Click the link to get a copy of Rachel’s book Wife Widow Now What? How I Navigated the Cancer World and How You Can Too
IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:
- What inspired Rachel to write her book to help herself and others.
- The personal grit of the healthcare journey.
- How Rachel handled her intense grieving after her husband passed.
- The silver lining to Rachel’s mother-in-law’s cruelty.
SOME QUESTIONS IRENE ASKS RACHEL:
- How did therapy help you to handle your fear and overwhelm?
- What was the amazing sign your deceased husband gave you to let you know he was with you?
- What were your fears and the eventual excitement of moving forward in your life?
Watch the episode here
Listen to the podcast here
Rachel Engstrom – Navigating The Cancer World From Wife To Widow, Grief And Loss To Healing And Helping Others
I am delighted to have this opportunity to interview a very courageous and dynamic young woman named Rachel Engstrom, whose book titled, Wife, Widow, Now What?: How I Navigated the Cancer World and How You Can, Too is a life changer for those facing cancer, their caregivers and anyone else who wishes to strive for happiness and fulfillment despite tremendous hardships. Rachel will be speaking to us from Apple Valley, Minnesota.
Rachel was only 28 years old when her 35-year-old husband was diagnosed with cancer. At the time, she knew no one else going through what she was so she had to research and dig deep to find the resources that adequately met her needs regarding diagnosis and treatment decisions, time off from work, disability, navigating insurance, finding support groups and locating resources to provide additional funding. It was through all this and more that Rachel became a resource who could connect friends, family members and others to those cancer resources as well.
Becoming a cancer wife, then a young widow transformed Rachel’s life in countless ways. She learned by trial and error how to care less about plans that the chips fall where they may and live in the moment. Her husband felt supported. She took care of household chores, showed up at work, learned to take care of her needs and strove to survive each challenging day. What a gal.
After her husband passed, Rachel moved forward from pain, suffering and intense grief to a successful new life filled with love and rebirth. I’m eager to hear about Rachel’s life before and after her husband was diagnosed with cancer, how she coped when she became a cancer widow, how she dealt with her intense grief and why she wrote Wife, Widow, Now What? to help herself and others. This will surely be a compelling and touching interview.
Rachel, a warm, heartfelt welcome to the show.
Thank you for having me here, Irene.
It’s my pleasure, truly. Let’s begin our interview with this question. Please tell us about your life and career before you met your husband, your courtship and marriage and how you reacted when you found out that your husband had cancer.
I moved to Minnesota in the fall of 2000 as a bright-eyed, bushy-tailed, as my mother would say, 18-year-old from a smallish town. To me, 40,000 was small in Michigan, not knowing 1 person. I got my Bachelor’s degree in Cultural Anthropology and went to the University of Minnesota. I fell in love with the cities. We call them the cities because Minneapolis and St. Paul are adjoining.
I had this plan in life that I was going to live. I don’t know where I thought the money would come from but I was going to live here for college and then travel here and there. I ended up falling in love and staying here. I’ve been here the whole time. In sophomore year, first semester, I went to a party of a friend of mine that was having someone I knew from the dorm. She was having a party for her boyfriend. Her boyfriend worked for this older guy. Older meaning I was 19 and he was about to be 26.
My life as I knew it was studying, sleeping, hanging out with friends on the weekends and doing things with that. It was very nice and easy to fold into the mix. I had a friend that ended up turning out to be a little bit of a psycho. He was nice. She was very threatened by my relationship with him. It was very nice to have this very kind person who wanted to spend time with me when I had no family or anything here.
We hit it off. We became the best of friends. When I was 22, in the spring of 2004, I graduated with my Bachelor’s degree. We got married the following August at the Wabasha Street Caves, which was a place back in the day during prohibition where you could drink, swing dance and things like that. They had it all. All the years later, my dad would always say, “What did you expect? You got married in a cave.” What’s crazy is Grayson has been gone for several years but I remember all those things. I still text and my dad will say, “Remember, decorate in the cave.”
From reading your book, your parents are wonderful. I fell in love with your father. Your mother is such a doll. People will relate to it. They were amazing when you went through your trauma.
They’re so fine. At the time in the book, when he got sick in 2011, they’d been married for many years. They’re downsizing their house. I go there in the summer every year. I drive ten and a half hours to their house in Michigan, make my mom go through all kinds of stuff and use cartoon voices to try to soften the blow, “Do you need it?” They’re the most amazing people.
That’s one of the amazing things that despite all this horrible stuff happening, we have this relationship that’s incredible. I had some trigger trauma that was a total other-side-type thing. They’re who I wanted to call. He worked nights. He worked from 3:00 to 11:00 in a printing factory. When you go to a salon and you get the little bag where they put your shampoo in, that kind of shiny thing, he makes it.
He would mix the big, gigantic couple hundred-pound drums of ink. He’d mix the colors that got printed on that plastic. He did that from 3:00 to 11:00 PM Monday through Friday. The whole time we dated until he got sick so from 2001 through 2011, I didn’t see him Monday through Friday. What’s crazy is that prepared me, which I didn’t know at the time, to be so independent because I had my career, friends and life while still having this security with this person.
You had a wonderful relationship with him. It came through very clearly. You were best friends.
There were stupid growing pains in my 20s and different things. It was cool because I got to figure out who I was as an adult. It helped, I hate saying, usher me into it but with all those things and insecurities, you don’t know while you’re figuring out money, falling on your face and all those types of things. I was one of my only friends to get married at 22.
I found out in the summer of 2010, I started having these horrific ovarian cyst ruptures and things like that. I found out my health was crap. That’s what it seemed like. I found out I had endometriosis. We had Chinese food on New Year’s Eve and I thought, “Next year has to be better.” We had the house and the dog. It seemed natural. We were wanting to have a baby.
He gets a fortune cookie on December 31st, 2010 and it says, “You’re about to have a major life change.” What we don’t expect is that fifteen days later he’s diagnosed with acute lymphoblastic leukemia. It’s like you’re going down the slide. You’ve been sitting in the park and someone kicks you down the slide.
What were his symptoms that got you to the doctor and that diagnosis? Was he very unbelievably tired?
Yes, he was. I got up in the middle of the night to go to the bathroom and I found him sitting on the floor in our kitchen because he was too tired to even wait for the microwave for 90 seconds. We went to the doctor. They thought he was anemic. He was 6’2”, naturally around 175 or 180 pounds. He was on the thin side. We knew he could lift those 200-pound drums of ink. He seemed pretty healthy and all those things.
He had been a little pale but he’d been himself normal humor-wise. Although, he was working extra overtime and was forced to work until sometimes midnight, 1:00 to 2:00 in the morning. I didn’t know until later when he was diagnosed and he started talking more about his symptoms. He was sweating a ton at night. What’s funny is a couple of years ago, I freaked out because I was sweating at night.
It turns out that you eat something sugary before bed. I had ice cream or whatever a couple of nights in a row. He was sweating profusely through his clothes. He was very tired like you have the flu. After a lot of tests and then a bone marrow biopsy, they were able to confirm, “This is what you have.” He was misdiagnosed with something and we thought, “This is crappy but we’ll deal with it.” They called and said, “No, we need you to come in for this test.” I knew in that instant that he had cancer.
What’s amazing is I credit it to my faith in God but 90% through his 27 months of illness before he died, I was stoically calm so many times. For better lack of a term, I went to an amusement park for the first time in ten years or something. You know when you’re buckled in and you’re starting to go up and go, “What did I sign up for?”
All you can do is ride the ride. You’re there. I was riding the ride and that’s how I was living. I took it head-on. I don’t know because I was 28. I’m not old by any means. You read it. I simply went, “I’m going to go get a heated blanket and cot. I’m going to sleep here and bring stuff into the hospital room.” I very quickly adapted because it’s like, “It’s go-time. This is what we need to do and what we’re going to do.”
When you are the caregiver, you don’t have the luxury to believe anything but that they’re going to be fine. They’re going to be better at the end of the half an hour and the lovey-dovey music at the end of the show. Things are going to go back to normal. I was very calm thinking, “I don’t want him to die.” I was figuring out how to navigate the world of all of that with the resources. It was more of, “This is our new norm. I can’t change it.” I got a buckle-up.
You must have gotten depressed and overwhelmed sometimes. Music became a lighthouse in the storm for you. What was that about?
Music has always been such a huge key thing for me. I can remember my sister for her fifth birthday party. I was three. Her having fifteen friends over in a big poster with Michael Jackson on the front window and it’s all dancing in the front yard. I am the oldest of four. I didn’t grow up with The Wiggles or Raffi. It was Michael Jackson, Prince and all those things. It’s been inherently such a calming thing.
That was such a big part of my life with Grayson. We would go to concerts and listen to music at home. Depending on traffic, the 20 to 30-minute drive to and from the hospital was the time when I wasn’t talking to someone detoxing on the phone to family or friends. That was the time that allowed me to hear it and zone out. You’re more focused on the lyrics. He was diagnosed in January 2011.
When you’re driving around, it’s so cold. Sometimes it’s negative ten in the winter. Music almost makes the air crisper. Your surroundings come in more, especially if you’re turning it up louder and you’re the only one in the car. It envelopes you in a comfort that you’re not going to get from humans or anywhere else. It’s going to be there. Especially listening to my boyfriend Bruce Springsteen, who’s from the state where you are. What Irene is referring to is in the book.
I have a playlist of the major songs that I can remember that I listened to during each year of the illness. It’s one of those things because it can take you away. You can have no money at all and listen to a song. It can be a vacation or an oasis. I would watch my husband have poisons drift into his veins, i.e. chemo and he would have his eyes shut listening to music. You can’t fully get that unless you’re going through it.
I identify with that also because when I lost my husband, I used to do the same thing. I’m a different generation than you are so the playlist was a little different. I’d fill my car and sing along with it. The tears were helping me to keep on going. Tell everybody what inspired you to write your book to help yourself and others feel less alone.
It was so tricky to be me, for a better lack of term. In the book, my poster and chronological order of CaringBridge, which if you’re not familiar with it, is instead of being inundated with text, emails and phone calls from your supporters, it’s a website when you’re going through a medical journey. It’s CaringBridge.com. I have all these resources in my book too.
When you have a medical update, you do a quick little blog and shoot it off. Anyone that wants to know about it has to subscribe to get an email about it. My book is in the CaringBridge post plus Team Grayson, which is a Facebook post. I have Instagram after he died and a healing blog. I write in a smaller group of friends on Facebook but I put all of it in chronological order. I started piecing it together in February 2014. He died in April 2013.
I’m at a different house now but I can still remember where he was standing in my house. In my bedroom, I was thinking, “This is something I can do.” This was so hard. I want to help other people. This is redundant but I feel so isolated alone. You do feel like you’re in this fishbowl and you’re the only fish looking out at the rest of the world.
You were such a courageous fish when I read your book. It was amazing.
Thank you. I’m realizing more. I published the book on Amazon. I wanted to do it where I could do it my way, go back and make edits if I wanted years later. I put it all together, put it on Amazon and got it out at the end of September 2020. You don’t think about the fact that when you’re writing about cancer, it’s going to be applicable to the COVID people. The more I talk about it, the more it’s applicable to all of these things.
I’m navigating diagnosis, treatment, insurance, disability, finances and all these things. I have budget charts. When you’re in the thick of it, all you think are, “I don’t want my person to die. I have to figure out health insurance. How’s it going to be paid for? How do I get some time off of work,” if you’re someone that’s working. Those are the top four things. If you have children, it’s like, “Who’s going to take care of the kids if I need to be there?” We did not have children but even then, we had animals so who’s going to come let the dog out?
I have all the logistics of when you are in your fog, thrown into boot camp in a foreign territory. It’s like day one of boot camp and they’re like, “Kid, here’s a gun. Go fight the enemy.” You don’t get your training. That’s what happens with something like this. I thought, “I want a guide where you can read it and feel comfortable.” It’s like we’re having a cup of tea. I’m holding your hand and telling you how I did it. Also, here are all the resources.
It’s wonderful because a person can look at it and say, “I got this covered.” You made it so much easier for people when they’re going through something like this.
I started putting it together in February 2014. It became too painful because I was reliving it. I was having PTSD and those poster illnesses going towards death, which I don’t know are going towards death. In the fall of 2018, I wrote and wrote. I would write for 8 hours and then cry for 20 minutes. It was so therapeutic. What was interesting is I edited the book myself eight times and had a professional editor as well.
Every time I did it, I distanced myself farther and farther away to the point where I felt devastated for this woman. It blew my mind that it was me. I was able to do it in a way where you don’t know part one is his illness. Part two is when I walk out the door after he’s died and his body is there. I navigate how to have a funeral as a 31-year-old, have a memorial service, do finances and afford a house or attempt to afford a house you thought you’d fill with children. You thought your spouse would be there and would help you pay for it.
Those things fell on you. You also went to therapy to get help, didn’t you?
I did. I connect people to therapy for a living. I’ve done that for several years.
I’m such a proponent of that. That’s great.
It should be subsidized. Everyone should have therapy. It’s so amazing. I went to a therapist almost a year after he got sick. I saw someone a year plus before he died. It was amazing because it was someone familiar with illnesses and someone that’d be able to say, “Rachel, have you tried this? Try A, B and C.” I would have spring in my step and almost bounce to my car. When you have someone that is ill, you can’t put your crap on them. You have to suck it up, keep it inside and have your other external person. Not that he didn’t know anything but as you read, there are lots of times where they’re out of it and doped up.
He’s soaked up. He’s reacting. He’s got all kinds of chemicals in him and every other drug in him.
You’re not going to get the support.
When are you going to lay that on him? He’s fighting for his life.
Even my parents, there was so much that didn’t even need to be talked about because we were both viewing it and we were all surviving. My parents were retired and older. At that time, my mom was 65 and my dad was 72. God love them. My dad’s like He-Man. When I was there, I called him old. My mom was like, “He’s not old.” They were the most amazing people.
They came and took shifts because he was in the hospital for five weeks. He weighed 175 or 180 pounds but when he came home, he weighed 145. He was tiny. I was so scared that he was going to break himself. If he got a fever or anything, he’d have to go to the hospital right away. He was in this clinical trial here at the University of Minnesota Hospital. He had chemo 5 times a week for 3 months and 3 times a week for 2 months. I wouldn’t have been able to handle any of that.
What’s hilarious is you think, “I’m 28. I don’t want my dad to fold my laundry and underwear. I don’t want my mom to be all up in my business.” It ended up being incredible. It was wonderful. I didn’t even realize until years later I knew it but how much they sacrificed by not even being together for weeks or months. They say, “We would’ve done it for any of our children and their spouses.” I’m like, “I know but I’m the baby and I needed you. Thank you.”
You’re going through all this intense grieving and heartache. You’re getting support from the outside but you also had that amazing familial support from your folks and it’s so important.
You’re living day to day. When you’re driving somewhere, you snap back into focus and you realize you haven’t been focusing, you’re like, “Thank God for keeping me on the road. I’m not dead. I could’ve crashed.” We all have that happen. That’s what it’s like. You’re living on autopilot. You’re on this merry-go-round you can’t get off of. See a therapist and have someone to talk to.
I have tricky stuff in my life all these years later. It’s great to be able to have someone that can give you suggestions. It doesn’t matter whether you’re a therapist yourself or how much you know. In my Master’s in social work, it doesn’t matter how much I know and how much I can help other people. You still need someone on the outside that can say, “I can see through the windows of your house, even though they’re dirty, that you need to fix A, B and C to get to the root of what you’re talking about.”
Have someone to talk to that’s not a friend or family that knows nothing. What’s so beneficial about that is they’re your person. They’re in your corner and they’re going based on what you’re telling them, not anyone else. We have so many relationships and things in our life that are swayed by external factors, whether it’s people. It’s so important to have this person that’s yours.
She’s a safe place to vent. Your folks are doing all this stuff for you but you don’t want to lay that much on them. You were able to let it fly when you saw her. I’m in therapy and I find it to be invaluable. There’s also an organization you talked about in the book called 7 Cups of Tea. Could you tell us about that?
I’ve never used it myself but I know of it. It’s cool. It’s an online website for counseling. There’s so much more of that due to COVID but it’s one of those telehealth-type things where you can be connected with a counselor anytime 24/7. You can do it free for a certain amount of time. They also have a sliding scale, if you want it to be regularly connected with someone. It’s neat to have a resource. Many people unfortunately still don’t have insurance and different things like that. It’s a website. You can go on there, sign up and talk to someone. There are qualified people that can give you resources and help you out.
Unfortunately, Grayson passes and you were filled with fears but also excitement about moving forward in your life. Do you want to talk about that? Talk about conflict.
I remember waking up clapping my hands in bed, getting up and saying, “Let the healing begin.” It was a crap but not that weird like, “What am I going to do?” I walked down the street. It’s like my house, another house, the end of the block, the street, two more houses and there’s our church. I have to do this memorial service and I walk in. There’s the gold lame couch and you’d think that Gladys and Gerald or whoever has sat there to plan their memorial services. It’s over the decades and it hits me like, “I’m a WIDOW. What am I going to do?”
It was a domino effect of figuring out how to navigate everything. I had a beautiful ceremony. Everyone wore bright colors. I played the music I wanted at my funeral. It was very bizarre because it was like a wedding where you’re going down the aisle and people are looking at you. It’s all of these things. Once all that was done, the common circumstance of that, I just slept. I went to Alaska for seventeen days. I always said, “Tell me what you will.” I’ve seen the Titanic I will not go on a cruise but I also didn’t think there would be one.
You went all by yourself.
What was cool is when the boat was about to take off, I started crying and said, “Show me you’re here. Show me a sign.” Kid you not, an eagle swooped down, turned its head, looked me in the eye and flew away. I was like, “I know you’re here.” It was one of those things that were amazing because when you have something this catastrophic happens, you see glaciers, mountains, God’s beauty and all these things. It snaps into focus that you’re the size of a pea.
There is a gazillion of people on this planet. A million of them have probably been somewhat near to the same thing that you have. You’re going to be okay because they’ve been okay. It’s not maybe common among the people that you know but it does happen and you’re going to be okay. What was a trip about this trip was that there were so many things. I was like, “I wish he was here. He would’ve enjoyed this and seen it.” I felt the same way when I was watching the series finale of The Office as well. I was like, “He’s never going to see this.” We always watch it together. I’m like, “He has unlimited cable up there.”
That’s why he’s going to say that he’s rare.
It was a summer of navigating, having horrific pelvic pain and barely being able to walk.
I want to clarify for our readers. You were having pelvic pain because you were having problems with your endometriosis and you’ve lost your husband. You’re having physical problems. When you took off for Alaska, were you still having those physical problems?
I was in pain all the time. This was before the big opiate epidemic, even though that’s been an epidemic for decades. I know that from working in mental health. I was popping Vicodin or Percocet at least once a day, if not twice, because of walking and things that hurt. It was like, “I’m 31. I’m like a grandma. What is going on?” The week before, I went to a friend’s house.
While I was there, I got a gigantic peacock feather tattooed on the inside of one of my calves with the word, serendipity. It had been a little over two months since he died. Despite awful things happening, I was moving almost like I was a snake, even though I’m deadly scared of snakes, that I’d shed my skin. We’ll say a buffalo that had molted.
In the show, we would say, “You were starting to rebirth yourself.”
I was starting to rebirth myself and I was becoming comfortable and happy in the little things, whether it was then or months later when you start to belly laugh watching sitcoms. You realize, “I’m okay. It’s going to be okay.” I wanted to mark that down. I have many tattoos. I have six. Every time I got a new one, my parents would be like, “You’re mutilating your body.” These are the big things to remind me of those things.
I remember being on the boat looking at this peacock feather that was still painful because it had only been a week and I’m taking my pain pills. I’m thinking, “How did I get from a hospital room with a dying husband to this beauty in Alaska?” I have no idea what’s going to happen but it’s going to be okay. It’s like when you have a vacation and you have a few things planned. This was pre-COVID when we could all go somewhere. That’s supposed to be funny. It’s probably not. When you’re on it and you’re like, “I have 5 or 4 days left,” my life was like that.
I would picture where he and I went to Colorado a couple of times to a house his aunt led us to use of hers. You’d see the road, open land and mountains. That’s what I would think. I would see that with the sun shining. That was my roadmap of what I saw. I had no idea what was farther down the road but I was living and believing that God had a plan. There was a purpose. I didn’t know what it was. I kept living that way. Unfortunately, my pain became too bad. I couldn’t take it anymore so I went to the gynecological surgeon and said, ”Can I get a hysterectomy?” He said, “Are you sure? I can’t put it back in once I take it out.” I said yes.
It’s either that or living in pain for the rest of your life.
That was another loss. I did that in September 2020. That was a whole other thing. It was bizarre to do this gigantic thing and not have him there. It was time to choose myself and my health. What was so interesting after he died is I was used to the ecosystem of the hospital and all the people I knew. I had my detached ecosystem of supporters. They were still in my life but people go back to their normal lives after the catastrophic illness or the loss. It was like, “I have to pick and choose positivity.”
I had a best friend of twelve years that became toxic. I was her maid of honor. I pulled out of her wedding. She became rude, toxic and very judgmental. It’s one of those things you don’t realize until you have something happen like this. I don’t know if it happened to you but it’s one of those things where when you leave a job, how you have your work friends at work and then you realize most of them are not there anymore. We didn’t talk to each other outside of work. I guess, we’re not that close. You revamp your support, people and all those types of things. It was very much a learning and rebirth process.
We have so much in common. After my husband died, I took a trip to Hawaii by myself and I also changed relationships because the other thing is you start to grow. You’ve been through something so traumatic that your perspective changes. You see things from a whole different viewpoint. Other people in your life don’t share that same perspective anymore so your relationships start to change.
I have to tell you and we talked about this. I was blown away by your mother-in-law’s cruelty throughout this whole thing. She put you on top of everything you went through. Thank God for your wonderful parents. On top of everything, her son was dying. Everything was going on and she was so awful to you. You did have a silver lining because navigating that extremely toxic relationship prepared you for another challenge that would appear later in your life.
I hate to have you revisit this but please tell our audience about your delightful mother-in-law and how the lessons you learned while dealing with her eventually helped you with another toxic relationship you encountered later on. That’s what happens. These things build on each other. These are our lessons.
You’re like, “God, not funny but funny.” It wouldn’t have mattered who he married. His mom wouldn’t have liked it. She was almost creepy to the point of like, “You can’t make those decisions. Your mom, not wife.” She would try to do things. We were early on married and she came over. We rearranged furniture and some lights because his birthday was on Halloween. They came over the next day and she’s like, “This lamp in here looks civilized.”
She was cruel and awful. She would be super manipulative and rude behind his back. We would fight the hour and a half on the way home in the car because I’d talk about it. His dad had died when he was a teen. You don’t want to believe that your other parents are awful. No one wants to believe that his parents are awful. Years later, she was rude to both of us so he experienced it.
While he was sick?
A little bit before but yes. I stole her baby when I was in my early 20s because I met him when I was 19. He died two days after I turned 31. It’s like, “I had dyed my hair black, blue-black, pink, purple and all these colors. I had pierced my nose and eyebrow. I didn’t eat meat. What am I going to feed you? What am I going to do?” Later, I had tattoos.
All these things were not in her wheelhouse of acceptability. She couldn’t control that so she would lash out and be rude. It was all passive-aggressive behavior. At the time, I didn’t know what a narcissist was and all those types of things. I knew what it was and I knew that it wasn’t right but I didn’t know the term. I struggled quite a bit to date.
When you’re a widow or widower, it’s hard. In most situations, I want to back up and say, “I feel like I was able to be positive and move on because I was so loved and I loved so much.” I know it’s very difficult with a lot of people, whether it’s a parent, significant other or spouse that might not have had a good relationship. I also was allowed the beauty of seeing, as awful as it was, his body falls apart. It wasn’t a car wreck like yours. It made sense to me.
Mine was very sudden and it was a shock. You had time to assimilate what was going on. You were in therapy the whole time. You were processing it.
Five days before he died, when I was told, “I’m sorry,” I didn’t think he was going to die because I thought, “We’re young and invincible. It’s going to be fine.” I dated and it wasn’t working. I had my house on the market and it didn’t sell. I get a new job and lo and behold, the guy in the cube next to me, eleven years older, is the guy that I will have been married to for years.
I met him two and a half years after Grayson died. He has a daughter. The daughter’s biological mother is a very toxic and similar person to my mother-in-law. The similarities are incredible but the life lessons that are learned have prepared me to come to this point, whether it’s talking to someone that’s been in a similar situation, a podcast, an article I write or a conversation.
It’s amazing how alike situations are. It might not be someone within your network or friends within your Christmas card list. It’s so common that these things are going on and that they’re happening. I feel as awful as what Rachel 1.0 went through with this horrible mother-in-law. It’s beautiful that it gave me skills.
You learn when you’re dealing with people like that. This has happened to me too. You don’t take it personally anymore. You see it but that’s their problem. That’s who they are. While they’re busy lobbing their grenades at you, it’s their stuff.
I feel like that was a lot of maturity for me in my 20s to be able to say, “That’s unfortunate.” This is what she’s like.
You personalize it, which is amazing. I was noticing that in the book.
I did do a point. When he was sick, it’s like, “Nobody messes with my baby,” or you’re lifting the car off the child. It’s not acceptable. His stepdad, the husband of the mom, is equal. I remember there was one time when he sneezed into his hands and we were all in the ICU. It was 1 of the 2 times that Grayson was in the ICU. It was my mom on one side, me, Victoria, the mother-in-law and then the stepdad on the other side. I handed her the hand sanitizer and the mom handed it to the husband. He hit it out of her hand and it flew across the room. He’s like, “I’m not going to do that.”
I’m like, “We’re sitting in the freaking ICU. You need to sanitize your hands.” This is a big dude, physically tall. I was like, “That’s my world in that bed. You can either play by my rules or leave.” Even as I said it, I was like, “You’re so ballsy.” He asked the nurse and the nurse was like, “You can.” It’s one of those things that you have levels of strength, gusto and resilience that you don’t even know are there until they have to happen.
Widowhood and your experiences with Grayson, what would you say bottom line? How did they change your life and craft you into who you are?
Just learning grace. No pun intended, the grace with Grayson. One of the biggest things that’s a hard pill to swallow is that we live in such a society of as much as self-care is promoted more but we want to do and take care of everything ourselves. When he died, it was like, “It’s time to take care of myself.” Not that I hadn’t been because I was going to concerts every now and then, doing things or friends coming to bring me tea, take me out of the hospital for half an hour or whatever that was.
After he died, I’m at home and so sad. I’m drinking and dating too much. I’m still going to church and reading my devotionals but the cord has come out of the wall and you’re like, “Why isn’t the TV on?” “Plug the cord back in, take care of yourself.” I was living in this widow fog but because I had had the real love, I knew I was going to be okay.
My key things were knowing I don’t know how but there was a light switch that at some point within the first couple of months, I decided I have to choose positivity. My older brother that came to help when Grayson first got sick said very early on, within the first couple of days, said, “You can choose to be bitter or better.” I have a chapter called Bitter Betty. I wasn’t always better.
I love what your brother said to you. You can choose to be bitter or better. That’s the bottom line for so many people. We all have a choice.
The Leukemia & Lymphoma Society has a training program called Team In Training, where you pick an event. There are athletes but you can start from scratch. I started from scratch. I walked in the cold from January until June and then in the heat, practicing one night a week and then Wednesday nights and Saturday mornings. I walked and trained while I raised money for blood cancer alongside people that had lost others. No one that I was with had lost a spouse but they had lost others. They listened and were there.
I did a half marathon in Minneapolis in June of 2012 while he was in remission and then in June of 2014 in San Diego, a year after he died. That support and amazingness have carried me through. Why I’m bringing this up is I was trying to fundraise money the second time after he died and I was so focused on, “Why are you not giving me money? I don’t want you to know what it’s like to be me so I need your money.” They have cutting-edge research and treatment protocols that are used for other forms of cancer.
Every three minutes, someone is diagnosed with blood cancer. It’s the number one childhood form of cancer. It’s terrible. Every nine minutes, I believe, someone dies of blood cancer. Grayson ultimately beat cancer. He had a bone marrow transplant. He had stem cells from umbilical cords but the chemo, radiation and all those things ripped up his organs. I had to take him off life support two days after I turned 31 on April 21st, 2013.
There were people that supported me then and even still. There are two women. One of them is 59. One of them is 61. They were a friend and a coach from Team In Training through the Leukemia & Lymphoma Society. They live a couple of miles from me. We walk in the winter and summer. They’re the best of friends. They’re amazing women. I probably wouldn’t be hanging out with people that are a couple of decades older than me but I’ve lost a lot of people. It was extremely painful to lose different people and have relationships change but there are so many beautiful things that come out of that.
LLS was able to give us a small amount of funding. He had an online support group for young adults with blood cancer. We went to one that was in person. He was able to feel part of a community, people and these things. They’re incredible. Over a ten-week period, past spring 2021 from March to May with a few friends behind me, we raised $51,000 for research for LLS, which means I had to get $50,000.
I balled my eyes out during the virtual final gala because I reached that $50,000 mark and I get a grant in his name that I put towards a specific kind of lymphoma. I know someone that has that is not well-researched. He did extra bone marrow biopsies and spinal taps. He donated his body to the University of Minnesota and I’m helping his legacy live on. It’s so cool but I was so bitter. It’s several years later and even when I’m raising funds that spring, I’m like, “You posted a picture of the $800 bouncy house you got your kid for the summer. I know you can give me $20.”
You still have these bitter type of thoughts. Everyone’s got their something but I do feel like there are some people that go through life that are smooth sailing. Good for them. For those of us, I’m like, “I don’t want. If your kid ends up getting cancer, I want an organ.” There’s always going to be a little bit of bitterness there. On the day of the event, it was ten weeks. It was insane. I can’t explain the fatigue that I had.
What a trauma. Did you take him off life support?
How old were you when you went through this?
I was 31. I was fatigued by this fundraising campaign messaging 3,000 people, all these businesses and all these things trying to get money. It was the day of the event and you’d think I’d be so happy and relieved. I cried for an hour and a half in pure red, hot anger that cancer steals people and he died, even though I’m happy and in a good place.
It triggers you. It brings you back.
I have this ginormous, nasty bruise. I went and gave platelets for the first time because this is very prominent about grief and rebirth. I’m happily married. We have this beautiful child and my stepdaughter. I love my job. I’m in a great place. I go give platelets. I’m hooked up to those machines in either arm and it hits me. I’m in this room. If you’ve never given platelets, they’re so needed. There’s a shortage. It’s awful. Many people donate blood but platelets are very needed. One transfusion of platelets, which takes about 2.5 hours, can save 3 lives. A mom needs it after having a baby, typically.
This is important information for people reading.
Cancer patients need them every day, almost sometimes. Bone marrow transplant patients like my husband need them all the time. I’m hooked up to this machine with my arms out. I start watching my Netflix. They have me hooked up and it hits me, “This is what he went through. I’m 1/100th.” All the time, I had to leave him at the hospital and go home or go to work and do all these things. I held it together but then as soon as I got home, I wailed. I cried for him and the children I know that are gone through leukemia and lymphoma. They had three years of it starting when they were nine. Their mom died from blood cancer.
I have a friend that I met that I was trying to find people to help with my book. She took care of her husband for two and a half years and then she got the same kind of leukemia. He then dies four months later. It’s like, “Why did these things happen?” What we can do is educate. I’ve chosen to take this horrific experience and say, “I went through this and the key takeaway is to get yourself the emotional support and surround yourself with positivity.” We have so many things at our fingertips. I had times when I took time off social media.
It’s important to not compare yourself. For me, it was the girl from high school. “She’s having her fourth baby.” I’m like, “My husband’s dead. I don’t have a uterus, a job and a boyfriend.” It’s all these things we expose ourselves to. I see a movie and I’m like, “That looks good.” I read the synopsis, whether it’s on Hulu, Netflix or Amazon Prime and I’m like, “Nope. It talks about illness and cancer. Don’t do it, Rachel.” With the music, movies, TV shows, people and all of it, choose the more positive stuff, especially when you’re going through the hard stuff. Asking for help is so hard. I had a hard time with it because I was Wonder Woman and then he died. It was like, “There’s no Clark Kent to come save Lois Lane.”
That was a good lesson that you needed to learn. I went through the same thing. I had to suddenly have people. I had three big surgeries after what happened to me and let people help me. When you’ve been a very independent person and everyone relied on you, that’s a big transition in your life.
It’s one of those things where it’s beautiful when you realize you can use your experience to help other people. You felt so alone in it and you’re going to use this knowledge to help other people not feel alone. It’s awesome.
I can imagine why you love your work because you’re so compassionate and empathetic to people when they are seeking help. You have this extra layer of understanding. Rachel, you state that even though bad things happen, life does get better, which we’re talking about. What is your message about the importance of healing that you would like to share with our audience?
It’s so important to know that things are going to happen on your time. I remember I had people and one of them was the friend that I had to cut out who said, “You should decide to be happy.” Even my brother was like, “You should pick a date.” I was dating someone new. He is like, “You should decide to be happy.” It doesn’t work that way. He even went to the extent of, “If my wife died, I’d be all right.” They have three small children at the time and I told her. She’s like, “That’s nice to know.” No, he wouldn’t. They’ve been together for many years.
It’s one of those things where you only know it’s right for you. Also, I am going to say, you have the time to wallow and grieve but you need to be actively grieving. You need to be working on yourself. It’s fine if you have some denial for a while but to be a healthy person, you do have to let people in and ask for support. You need to know that you’re not alone in it.
You have the time to wallow and grieve but you need to be actively grieving. You need to be working on yourself. It's fine if you have some denial for a while but to be a healthy person, you do have to let people in and ask for support. Click To Tweet
There’s someone that I know that her husband died a few months before mine. God loves her. I feel like that’s the Southern saying, “Bless her heart.” It’s nice out. She wants to go outside. Years later, I feel like she’s so stuck. She’ll do a Facebook post of the two of them together. Granted, she was with him for 25 years and I was with Grayson for 11.5. She’ll say, “I can’t wait until I get to see him again.” Almost like, “I’m counting the days.”
She’s stuck in her swamp of suffering in a way.
I’m thinking, “You’re 58. You can find another person. Even if you don’t, there’s so much joy to life.” She’s a mom and a grandma. We want to see our loved ones again but there’s too much to live for. Whether it’s the person in the checkout line, at the doctor’s office, at the DMV or wherever you are, there’s somebody that’s going to need you at some point. Probably a stranger to say, “I’m so sorry. I’ve been there.”
You say that to them and you mean it because it’s incredible, the fact that I was able to be with him as he died. There are so many freak accidents. People come back from war. I’m starting to reach out to veteran organizations and things because that’s such a population where it’s awful. Whether there’s PTSD and people take their lives afterward or die during the war. We all have different ways of how death affects us but we all have to deal with it. To an extent, we have to suck it up.
It’s not fair and pretty. People used to put it all on the line and pan for gold in the Yukon days in Alaska. They didn’t have their Anarex and nice jackets. They had their little blazers and going up there by March. I might see them. I might not. We’re going through the same things. We’re getting gold nuggets. We don’t even know what we’re getting. It doesn’t make it fairer, better or easier but more than likely the awful ugly stuff you’re going through is going to help yourself and other people later.
It blows my mind that I went from this widow that I call lick at the bottom of the barrel to having super low self-worth and self-esteem. They’re like, “This guy wasn’t liking me.” I had been a happy working wife on a board, a local aging board and doing all these things to like, “Did he text me?” I’m trying to have all these jobs. It’s like, “No, take control of who you are.” I give myself so much grace in that experience of knowing those were my widow years. I was in a fog going through those things.
You kept healing and moving forward in your way. You’re talking to your person. I love the chapter when things started working out for you after you went through all those struggles.
It was one of those things where I kept believing things were going to be okay. God had a plan. I wanted the blueprints. I was not allowed to see them. It’s important to give yourself space and time. It might take 6 months, 1 year or 3 years but know that it does get better. There are so many people like Irene or me that want to help you and say, “We did it and we’re okay.” It is ugly. Some days are ugly. Some days are beautiful. In my book, I’m gritty and real. One day, I almost feel like, “Today is wonderful. I went to the mall,” but I feel like that’s how cheery I was. The next day, I’m like, “I can’t stop crying.” That’s what it is.
The grief is like that.
It’s a rollercoaster. Once that bar locks you down and you go up the tracks, like it or not, ride the rollercoaster and submit to it. I’m several years out and I know you’re way more than me, Irene but I don’t often look at pictures of him. It’s not because I can’t but it’s because it’s weird for my head to try to format that and say, “I do remember you.”
It’s hard because it makes me almost feel guilty like I should remember more but it’s my health moving forward and moving through the motions. When it’s his birthday, our anniversary or different things, I’ll do a post on social media, “This would’ve been our seventh wedding anniversary.” It’s important to honor those things but it’s important to honor that I’ve succeeded. I’m making it and doing all those things. I talk about in the book how to revamp birthdays, anniversaries and holidays.
Your book is wonderful for all that.
Thank you. You have to figure out, “I’m going to put on my bigger girl or boy pants.” I’m going to say, “They’re not here and this sucks. It is not fair but I’m here and I have to do something about it.” Some of them might be great holidays. Some of them might not but it doesn’t matter. What matters is that you’re trying and doing an effort. You will surprise yourself with the layers of strength that you have. You will be quite pleasantly surprised at what life brings you.
With all of this, everyone wants to buy your book, Wife, Widow, Now What?: How I Navigated the Cancer World and How You Can, Too. Where can they find your book? How can people connect with you, Rachel?
I initially wrote it for cancer. It’s my version of Eat Pray Love. When life throws you a grenade, you go from A to Z and back up to A. It’s a good read for anybody. It’s important if you’re like, “My neighbor might be going through something. I don’t know how to support them. Their sister-in-law is sick and they don’t know what to do.” Give them the book. You can find it. It’s exclusively on Amazon. I have a Wife, Widow Now What? website.
You can find Wife, Widow, Now What? on Instagram and Facebook. Ask me questions or whatever you like. I have different articles I write with different perspectives that I’ve written for blogs and things for different organizations on ways to look at your grief, ways to think about your grief and ways to equip yourself with the skills, tools and things like that. I have all those posts as well.
Of all people in this universe, Miss Rachel, what is your tip for finding joy in life?
There are two greatest gifts that we have. One of them is the human connection. I have alarms that go off on my phone. Sometimes I don’t adhere to all of them right away. It might be snoozed or it might be the next time. It does a week later but I have alarms set to check in with people. The human connection is important. It’s free. It doesn’t cost us anything. You can send someone a text like, “I’m thinking about you.”
One of my biggest supporters and amazing friends was close friends with my husband, the one that deemed me a unicorn. I sent her a text and it was one where I sent ILY or I love you. She wrote back, “LOL”. I’m like, “She felt a little bit of love randomly.” She’s taking care of her three kids. Somebody needs that. If you know someone’s going through a hard time, shoot them a text, let them know and go get them groceries.
That brings you joy when you do that.
It does. The things that I wasn’t good at asking weren’t good at doing. All these things, I discuss in there, like how to help yourself and other people. The greatest thing that brings me joy is laughter. I am watching Cheers for the nth time. Cliff Clavin, Carla, Sam Malone and Norm Peterson bring me so much joy. It’s so amazing that we have access to these things. It’s funny to explain it to my child. When I was little, if you missed it, you missed it. It didn’t come on again. Be able to belly laugh and have something on, even in the background.
I love a good song, Sir Duke or Superstition by Stevie Wonder or Born to Run by Bruce. I don’t do this enough but being out in nature gives me a lot of joy. There are so many things we can do that are freeing. It’s wonderful because of the laughter, connecting with someone, being out in nature and exposing yourself to positivity. There’s no other way to put it but they make you feel alive.
When you’ve been through what we’ve been through, so much illness and death, you think about how the sun revolves around the moon and how it’s slow, all the orbits of everything. It takes us time to craft that. We’re revolving but we can revolve and pick the positive things that we want along the way. When you do that, life is more joyful.
I want to tell everyone that your book is so helpful and wise. It gives its readers a raw and honest firsthand account of the impact a serious illness and catastrophic event can have on a person, while also informing how these challenges can successfully be navigated. I especially love and respect how you journey through all your daunting challenges toward love and rebirth by continually choosing to strive for happiness and fulfillment with positivity and gratitude. That’s one of the most wonderful messages that comes from your book.
I want to thank you from my heart for this compelling and touching interview that’s likely going to inspire many others. Here’s a reminder, everyone. Make sure to follow us and like us on social at @IreneSWeinberg on Instagram, Facebook, Twitter and YouTube. As I like to say, to be continued. Many blessings. Bye for now.
- Rachel Engstrom’s book: Wife, Widow, Now What?: How I Navigated the Cancer World and How You Can, Too
- Rachel Engstrom’s Website
- 7 Cups of Tea
- Team In Training
- Elizabeth Gilbert’s Eat Pray Love referenced in this episode
- Connect with Rachel Engstrom on Instagram and Facebook