Heya! Happy Friday! I’m celebrating the weekend by watching the snow fall, practicing my set for a couple concerts across thestate next week (see you in Moorhead, MN?) and catching a rodeo in town on Saturday night. I heard there is going to be a trick rider and Rosie is PUMPED. (Because, according to her announcement at her pre-school graduation, that is her career aspiration.)
Recently I had the chance to sit down and talk to the brilliant and resilient Jackie M. Stebbins. I met her at a women’s writing event and in the short time we had together we could just tell we were cut from the same cloth. Jackie is a former accomplished attorney who operated her own law firm until her life was sidetracked by autoimmune encephalitis. Autoimmune encephalitis is a rare and can be fatal brain illness that is caused by a person’s immune system mistakenly attacking healthy brain cells. Jackie is now a writer and motivational speaker. She uses her high energy personality, positive attitude, and story to spread awareness about autoimmune encephalitis and to share her inspirational resilience.
Throughout my life as a writer and performer I am consistently reminded of the importance of sharing our stories, not just of hope and success, but of struggle. Jackie is honest about both and is using her struggle to help others feel seen and heard.
It’s hard for me to listen back to hear myself talk on these programs. But with Jackie, I was given space to really open up about how health struggles affect every aspect of your life, and the lives of those around you. She gave me that space and does so with others as well. I am proud of this conversation about music, motherhood, cancer and pushing through. Thank you Jackie. We could have talked for hours.
Listen to the podcast here or on Spotify, Apple podcasts or wherever you get your podcasts
Three summers ago, when my daughters were four and two, we brought them to the shores of Lake Sakakawea to take a boat ride and get an ice cream cone at the marina. I was only a couple months or so post-surgery to remove the tumor that had been blocking a large part of my airway, the one that sliced me right down the middle and left me with three scars where the tubes went and one big one that, for a while, and at that time when it was fresh, resembled a zipper, nice and straight starting at my clavicle and running all the way down my sternum.
I like to think now, from far away, it makes me look like I have the cleavage God never gifted me, but I digress…
Anyway, at that time I wanted to do anything and everything that got me out of the house and distracted from the pain of healing up and the worry and fear that would cling to the back of my throat if I laid too still or it got too quiet. Not that it was ever quiet those days with two daughters young and healthy and growing in the summer sun, a blessing that would keep me out of my head and into their latest art project or wild thing they were attempting to catch. So that hot day we all put on our swimming suits under our shorts and summer dresses and headed out to do what normal families do when they don’t have a mom recovering from major surgery and are spared, at least for now, the black cloud of cancer or loss, as if any breathing adult is walking around completely free from burdens. As if being a human isn’t knowing what could happen, what inevitably is going to happen, and mowing the lawn or ordering the cocktail or training for the race despite it or because of it, depending on the day. Depending on the outlook.
The girls swam and made sandcastles and swatted away the horseflies and we probably ate the sandwiches my husband made or maybe we made the decision to just grab a cheeseburger at the marina restaurant, what we all wanted to do in the first place. Truth is, I don’t remember the exact details of the day. I don’t remember what my daughters’ swimsuits looked like or even the little nuances we swore we’d never forget, like all the words two-year-old Rosie mis-pronounced or the soft pudge of their toddler cheeks under my smooches, but I do remember I couldn’t lift them then, so they would hold my hand and ask me when. And I do remember they would want to see that scar, to face it, to know about it, even when it was fresh and scabbed and weird and new. And they were young, and I was their mom and while I only had a few years of this parenting thing under my hat, I understood quickly that if I wasn’t scared, then they weren’t scared and so I wore that swimming suit and put on the sunscreen and lived in the world with my big new scar and that was it. This was a part of us now.
I have a point to make here and I get to it more quickly when I tell this story on stagewhen it’s my mission to argue that our failures and imperfections, our bumps and bruises and struggles aren’t for hiding, but for acknowledging, and here’s why. From across the yard of that marina, while I was standing up by the picnic tables to help situate my daughters, a man waved at me and yelled “Hey!” I looked up thinking that I knew him, but I didn’t know him, and so I just yelled “hey” back because we’re friendly here. And then he pointed to his chest and loudly asked (because he was across the yard) “Heart surgery!?”
“No!” I replied, understanding in a few beats, what he was asking. “Tumor!” I yelled back, suddenly and weirdly feeling a little proud that a stranger noticed and acknowledged the very thing that had been running and disrupting my life for months and months.
“Oh, heart surgery here!” he yelled back, pointing again to his chest before giving me a wave and getting back to living a life he was given thanks to that scar under his shirt.
Once, right after my surgery and before this stranger and I nonchalantly hollered at each other about the most terrifying time in our lives, I had a woman ask me why I didn’t hide my scar. She said her husband had one too, but she buttons his shirts up to the top for him if he forgets. She’s embarrassed? Maybe. Or maybe it just reminds her how scared she can be.
I told her I wear it for all the people who would have given anything to wear this scar if it meant they had one more day here with their kids, or in their garden or on their boat fishing the rocky shores and stopping in the marina to grab a bucket of minnows and a candy bar. It never occurred to me to hide it, but her question made me wonder why, really. The exchange with the stranger on the edge of that lake that had me proudly declaring the imperfection to him and my daughters and anyone withing yelling range, solidified the reason—if you allow yourself to be truly seen, scars and all, others see themselves in you. I argue the act brings with it more hope and acceptance and love than anything else we can do for one another, and that can make all the difference in the healing part.
And also, sometimes, those imperfections can make you look like you have cleavage, at least maybe, from far away…if you squint…
To those of you who are suffering with chronic pain and showing up to your life, day in and day out as best as you can, today I want to say “I see you.”
For the past year or so, before the scope and sternum surgery that removed the tumor from my airway and declared me cancer free, and for the months since, I have been dealing with chronic headaches and nerve pain that is always there, sometimes putting me flat on my back and other times relenting just enough to allow me to do something other than think about the pain. I’ve been doctoring, researching, trying medications and treatments, changing my diet, justifying it as a repercussion of the trauma my body endured and crying in frustration because I want my life back to the way it was before.
Today I feel like I’m finding a light at the end of the tunnel, help through physical therapy and check-ins at Mayo Clinic, and I’m feeling hopeful. Hopeful enough to realize that maybe it’s time to share it here. Because people on the street, or at the grocery store, and, of course, in my circle of family and close friends, they ask me how I’m feeling. And, in the spirit of being honest, I’ve made a promise to myself after what I’ve been through, to not beg off on that question. In the spirit that my story, even if it’s not pretty right now, might help someone else.
And so, I tell them: I’m still recovering. I’m hopeful I’ll get to the other side of this.
But man, when you’re in the middle of it, in the middle of work that needs to go on, in the middle of motherhood and trying to be a good partner instead of a sick partner, in the middle of wearing out the optimism, putting off big plans not to mention the laundry, and worst of all, shushing my children when I should be dancing with them in the kitchen, it’s hard.
Because it turns out that the level of their voices, their enthusiasm, temper, frustrations or needs don’t quiet down because we aren’t feeling well. In fact, I think, these children might amp up just to see if we’re still the momma or daddy they know us to be. Turns out we still want to/need to be a parent even when it physically hurts to raise our voice or comb their hair. And the house seems small when we so desperately need a rest, especially when they find us at the moment we’ve finally fallen asleep, or snuck away for a shower. They want to climb in the bed or get help with doll clothes or need a drink or to tell us how her sister wronged her. And we listen while our body aches or works so hard to heal it feels like we’re drowning…
And so this is another lesson I’m learning in compassion during the past year or so of getting rid of cancer and trying to heal up a body that is screaming at me. Because I’ve been smiling and carrying on as best as I can despite it, it occurred to me that there are people around me doing the same thing day in and day out, working and raising kids, taking care of aging parents and businesses, serving on boards, continuing to show up while coping with physical pain or mental illness that tries its hardest to break them down. And when you ask them how they are, they will say, “Oh, just fine, thank you.”
And so today, while I’m feeling good and hopeful, feeling like I have a plan and that I can see the other side, I just want to tell you that you are strong and brave and doing good. I pray you get well if you can, and if you can’t, you find relief from the pain and a peace to the chaos.
And while I’m here, thank you a million times to the partners, family and friends who are fully and completely here for us, to pick up when and where we can’t.
Here’s to one day at a time and a better tomorrow.
Those of you who have been following along here know that this spring I was diagnosed with a cancerous tumor that laid a good portion of real estate down in my airway, nearly blocking both of my lungs entirely.
Five months, two surgeries and a big ‘ol scar later, here I am, cancer free and able look back on this as a blip. Hopefully it stays a blip…
And there were many things I learned during this process, of course, but what has been the most interesting outcome has been people asking me how I stayed strong and kept hope during the uncertainty and pain, as if holding the scar meant I held some sort of secret.
Because don’t we all need some hope about now? Don’t we all just want someone to tell us it’s all going to be ok?
The truth, of course, is that I haven’t always stayed optimistic. I didn’t always hold hope up. I had plenty of moments of completely losing it, going to the darkest possible outcome in the middle of the night, or when the sun was shining, or when my kids wouldn’t stop whining in the car for fruit snacks I didn’t pack…
I had my moments.
I still do.
I’m still terrified sometimes.
But not as terrified as I am grateful.
When I was first diagnosed with the tumor in Bismarck, my husband and I sat down with my doctor to take a look at it and make plans for Mayo Clinic. I remember telling them, “I can’t believe I recorded an entire album with this thing!”
And then my usually stoic husband chimed in–“Maybe you should rename it ‘Tumor Tunes.’” My doctor about choked on his mask and we all started laughing.
And I didn’t know then how bad it was going to get, or what the next six months were going to look like, but after I let my thoughts wander, I find that I somehow always default back to the place where everything is ok. Because being terrified doesn’t work for me if the end goal is that I want to go on living.
It doesn’t mean that I’m naïve, or unaware of precautions or process or the worst of it, but I’m pretty good at convincing myself that I will, we will, get to the other side, whatever that side looks like.
Having that mindset then frees up some space for things like laughing. Because even in a personal crisis, the world keeps on turning and I didn’t want to miss it.
But am I saying optimism is hope? In some cases, yes. But being raised out here in the rough country of western North Dakota, I’ve watched enough calves brought inside from winter storms, witnessed Mother Nature change the best laid plans and have been bucked off of enough to be able to confidently call bull on that ‘ol phrase “Get back up on that horse again.”
Yeah, sometimes getting back up is the only way to get through. But other times resiliency means knowing when to put that horse out to pasture before he kills you.
Knowing when to quit can often be the bravest thing we can do.
But you don’t have to be brave to be tough. Sometimes in order to see what we’re capable of, we have to be scared out of our minds. What turns us from afraid to resilient is what we do about it.
I wish I could ask my immigrant great grandfather Severin about how he felt coming across a million miles of ocean from Norway to lay claim on a property he’d never laid eyes on. Or what it was like riding his bicycle 80 miles cross-country to his homestead. Think he was scared as a teenager on that ocean, wondering if he’d ever see his homeland again? Think he was scared raising 12 children on this unforgiving landscape.
Think he was scared walking through a herd of cattle that a group of cowboys ran across his farmstead and sorting out the ones they had stolen from him, one by one?
And if I could ask my great grandparents what made them keep fighting through the fear and tough times, I bet they would say what my grandparents would say, what my parents would say and what I would say now to my daughters now…
If it’s worth fighting for, it will give you a fight. And if that fight looks like sailing the ocean or walking miles alone, then you do it, even when you’re scared as hell.
But sometimes the fight looks like asking for help, and, you wouldn’t guess it, but that might be the hardest part of all of it. But then, when you come up for air, screaming and kicking and ready to live again, you will know exactly how to pass it on.
My husband and I celebrated our wedding anniversary in my surgeon’s office on the fourth floor of Mayo Clinic, almost 700 miles from the oak tree on the ranch in western North Dakota where we were married 14 years ago when I was on the edge of turning 23. We vowed for better or for worse, in sickness and in health, as if we really knew what that meant at all.
But we never know what’s coming, do we? We’ve sure learned that lesson in these 14 years, watching our plans try their hardest to fly out the window while we hang on for dear life. Turns out, even when you think you might never come up for air, there’s always the surface, the other side of the hard things. We just have to wait for it.
And so we treated our latest visit to Rochester as if we already knew the news. Eight weeks out of a sternotomy to remove a cancerous tumor attached to my airway, I was feeling a bit more like myself, a bit more like laughing, a bit lighter from the weight of pain easing. After dropping the kids with the in-laws we took to the road like we were going on vacation. Because why not? We were together. We were OK. We were driving along Interstate and highway surrounded by sunflower fields reaching toward the sky and corn taller than two of us stacked up.
We spent the five days between doctors and tests eating as much as we could and finding shelter from the rain and sun under Minnesota trees and patio umbrellas. Once, as we were indulging in a 2 p.m. cocktail and late lunch, the woman a table over stood up to tell us that we really know how to live. We didn’t know if it was the calamari, the drinks or the loud laughter, but we decided it was the best compliment we could have received.
To know how to live.
I’ll tell you now that the doctor, on our 14th wedding anniversary, told us I am going to be OK. He said he couldn’t have done a better job repairing my airway. And that the cancer? Well, he got it all.
Life will now look like a big scar down the middle of my chest and a CT scan every six months for the foreseeable future to make sure the cancer stays gone, moving it to the back of my mind, instead of the center of our worries.
And for that we are the lucky ones.
Fourteen years ago I carried sunflowers in my bouquet as I walked down the “aisle” in that cow pasture, toward the man who would become my husband that day. Little did I know that it takes so much more than a wedding to make a marriage. Little did I know that the only thing you can really count on is that things go wrong.
And then, right again.
As we headed west out of Rochester and toward the rolling buttes of home, I imagined those fields of sunflowers waving us on into a new year, a new season, spectators with encouraging smiles, reminding me of the love and support we’ve received from our family, friends and community during these past several months.\
Reminding me that life is just a series of triumphs, roadblocks, joy and heartache. But my favorite times have always been the millions and billions of heartbeats in between.
I had an interview this morning with a local news station about my health this week. It’s still weird to be talking as a cancer patient, especially when I thought I would be using this time to perform and promote on behalf of the new album. But as we all know, plans change, you’re not promised tomorrow and I’m nothing if I’m not resilient. I’m happy to share my story if it inspires someone to fight for their health and for the life that they want.
Water park visits, youth rodeos, T-ball games, street festivals and fairs, performing music almost every week in a different community, a state fair visit, backyard gatherings with friends and camping trips and work on the ranch, work on the house, work on planning community events…
That’s what summer looked like last year, and the year before, and the year before… a calendar full, the weekends penciled-in, not enough time to get to the lazing around part, the slow parts, the parts we stay home, bring Dad lunch in the hayfield and fight boredom with a homemade slip-‘n-slide — the summers I remember as a kid growing up on a ranch in the middle of nowhere.
Those summers looked more like mowing, barn painting, bareback horse rides to pick Juneberries, running through the lawn sprinklers with my best friend, bike rides, the county fair and an occasional trip to the outdoor pool.
Yesterday I made the girls homemade bubbles, the same way my grandma used to make them for us, and just like my daughters, we would go dancing across the lawn in the heat of the day with a string of sparkling orbs trailing behind us.
Watching them brought me back to that little brown house next to the barnyard and eating Schwan’s push-up pops on the front steps.
I haven’t spent so many summer days (or any days) consecutively at home at the ranch since then, it seems. But with COVID canceling every singing and speaking job for months and a cancer diagnosis derailing and bypassing every other plan we made for ranch, business and housework, here I am shuffling around the house and yard, tossing feed to the animals and placing my lawn chair next to the sprinkler as the kids run, squeal and jump through this unexpected summer, seemingly (and thank goodness) no worse for the wear.
If you would have told me last year this is where we’d be, no one would have believed it. But I see now in so many ways that I was yearning for it. Not the cancer part. Not the terrifying, life-threatening, business-ending pandemic part. No. Not that.
But a chance to take it down a notch, to step back and remember why we live here. Why we built this family on this piece of land and what it really means to exist here.
And I’m going to preface this by saying we are the lucky ones here. We are still working. We have land in which to social distance while we raise animals to help feed the nation. We have family close and we take care of one another. We are not on the front lines. We are keeping healthy, so far, and it’s because of that perhaps that I have the luxury of looking for lessons here.
But each day that passes in my recovery as a cancer patient (and a rancher, and a musician, an event planner and a mom and a daughter and a wife) in the time of COVID — each day that keeps us watching the news, arguing and discussing, staying close to home and riding the ponies and taking long walks to the grain bins — I’m looking and listening for how it’s speaking to me, how it’s changing me and my family, how it might affect our communities, our country and our world.
Because the greatest tragedy of it all, to me, would be that all this suffering, uncertainty, loss and worry at this moment in history and in my personal trials, would be in vain.
And that could send me into a panic, because there’s so much that needs to change…
But then I watch my girls run across the yard, bare feet, wild hair and bubbles flying against a blue sky, and I think — even if all we learn from this is how to sit still long enough to make homemade bubbles and eat push-up pops on the front porch, and turn the backyard sprinkler on in the heat and take good and better care — maybe, on the other side of this, we could be on our way to being OK…
Thank you all for the outpouring of support, well wishes, love and prayers as we take the next step to get this cancer out of me. I talked to the thoractic surgeon at Mayo on Friday and it sounds like they will open me up at my sternum to get the best look at the remaining tumor. The goal is to remove all of it by cutting my tracheal tract and putting it back together. They will have a big team of doctors there to make sure they can handle any surprises and will be able to tell right away if they were able to get it all. If they can’t, I will be given the time I need to heal up and then we will proceed with radiation. This type of tumor responds well to radiation (and not well to chemo).
I feel confident in the plan, nervous, and ready to get it behind me. I’m expecting the surgery to be scheduled in June sometime, but we haven’t made those plans yet.
We have received such an outpouring of love from people far and wide and we feel your prayers and thoughts lifting us up and we are so grateful.
When my girls walk out the door to play outside, and the sun is shining, and the wind is calm, as they run toward the playground or up the road to the big rocks, they say, “It’s a beautiful day!” Or, “It’s a perfect day for a walk,” or “It’s a good day to ride our bikes.”
And there are plenty of things that I say and do that I don’t want my kids to repeat (because I am a mother, but I’m far from perfect,) but I beam when I hear them have this sort of gratitude for a sunny day.
Because they’re so young, it gives me a bit of hope that the declaration and recognition of the good and beautiful things that they see and feel might become a sort of instinct that will serve them well when life is less than fair, less than perfect or unexpected in the worst ways.
Since the removal of the tumor that was blocking my tracheal tract this month, and the unexpected diagnosis that it is “cancerous,” I’ve been thinking about what has notoriously pushed me through the difficult times in the past. And I’ve been thinking about gratitude and how it serves me.
But first, I want to share that I’ve been having a hard time saying that I have cancer because I don’t feel like the amount of suffering I am going to endure here warrants that loaded and scary word. Because I’ve seen cancer take its difficult toll on the people I know and love and I’ve seen sickness ravage their bodies and take the light from their eyes.
I don’t know this for certain, but from what I understand, my life with this diagnosis will be short-lived. And because of that, something in me wants to save that word for the warriors who’ve had to fight harder. And the ones that we lost to it.
I realize now the “it could be worse” mantra is one I go to when I’m staring down a fear or suffering with grief or worry. I would say it during our infertility struggle and pregnancy losses, and I would say it when my dad was sick and dying in the hospital bed. He survived. We all survived it. It could be worse. We are the lucky ones.
To recognize others’ suffering beyond our own, I think, is a useful tool. But then, sometimes, so is walking to the top of a hill and crying out “Why?!” In my life, I’ve done both.
But for now all I can think is that I’m thankful to breathe better and thankful for a diagnosis and for good doctors and a supportive community and that it’s a beautiful day to watch my girls drink from the water hose and tear off their clothes to run naked in the sprinkler.
Thankful that, because the stars aligned just right to keep me safe, I can be here for that.
And I’m thankful that all through my childhood, the people who surrounded me pointed out their blessings as they saw them so that I could see them, too.
Even if it was as simple as melting snow on the hilltops, a ripe tomato from the garden, the back of a good horse, enough Juneberries to make a pie or just the sunshine on our shoulders on a perfect day to ride our bikes.
I wonder if they’ll remember this, when their dad was a jungle gym and they were so small and wild, hanging off his arms like monkey bars, standing on the tops of his bent legs and leaping off into a carpet sea of lava without fear.
In the movies, they would slow this part down, the part where I sat on the floor of our bedroom in my pajamas, watching my young family roughhouse and play.
In the movie, they would play a suggestive song and hone in on my children’s big, wide-open laughs, pieces of their blond hair loose from pigtails and floating in the sunbeam from the crack in the curtains, his strong hands tossing them safely while they squeal. And my smile, too. You would see it, grateful but apprehensive about the turn our story’s taken.
And anxious to get back to complaining about the constant state of stickiness on our countertops the way people do when things are going along just fine enough that you get to be genuinely annoyed by crumbs and laundry and the light fixture that flickers and muddy little boots tracking in on floors that never stay clean, instead of so damn grateful for it all.
But this isn’t a movie — we can’t slow any of it down. And my soundtrack is the voices in my head going down rabbit holes and back again, panicking and then reassuring myself the way I’ve done when faced with tough news about the delicate health of my family members. I know how to find faith there, to center myself. But I’m not sure how to be the one who needs prayers.
For six months, I’ve been having a hard time getting my breath. Was it a cold I couldn’t shake. Asthma? Stress? Was it the reason for the headaches I couldn’t tame with Advil or a nap?
Last week, I found out why. A tumor blocking 90% of my tracheal and bronchial tract. A slow-moving cancer that has likely been growing in my body and spreading to my airway for years, just waiting to make its presence known when it became life-threatening enough to send us rushing to Rochester, Minn., to meet with the experts at one of the best hospitals in the country.
And so that’s what we did. We wrung our hands and clenched our teeth and took deep breaths and called our family and met with the experts and got a plan. And then my husband and I, we sat for three days in a hotel room waiting for the next step, unable to go anywhere to distract ourselves in a world that is all but entirely shut down.
So he laid down and I laid on his chest and we pretended we were on vacation and it was raining. We ordered in food and watched terrible television and woke up early on Monday morning and headed to Mayo Clinic where I hugged him goodbye, the doctors removed the tumor from my airway and I woke up to deep breaths again. Feeling good. Feeling just fine. Headed home.
That part is over. The next step is going to be rougher, a surgery that we’ll learn more about in a few days, one that will have me in the hospital and away from my sticky counters and muddy floors for a while.
In my life as a writer, lessons seem to find me where I stand. Yesterday, my little sister wondered out loud why we need to keep being reminded, in these dramatic ways, to be grateful.
Is there something more I need to learn here? I don’t know yet. Do these things happen for a reason? Maybe.
But maybe they just happen and it’s up to us to do with them what we will. And there have been some divine interventions that have taken me out of the path of disaster on this journey so far, so I’m just going to work on the brave part.
I know I can be brave.
And I know I can be angry as well as grateful. Terrified and hopeful. Panicked and at peace. In my life, I’ve been all of those things at once already. I’ve had some good practice. But until now, I didn’t know the fear of not being able to be there for my children.
There’s no other option than the option of being OK, so I’m going to be OK.
Yes, in the movies, they would slow this all down, so maybe I can, a little bit, to be like my children — impervious to the worries of the world, dangling from jungle gym arms, too wild and held by too much love to fear the carpet sea of lava.
Meanwhile, back at the ranch... 