The In Between : Learning How to Live

There’s a phrase that’s often used in the English language to portray how easily something returns to one’s coordination and consciousness. “Like riding a bike” is used to elicit an ease about returning to an activity - something the body and mind should remember how to do if only we dare climb back on the proverbial bike. There’s a level of trust we must inhabit within ourselves that our body will indeed remember how to balance, brake, and glide. I think back to my middle school self and my purple bike that saw so many miles of my little hometown. Sun-kissed afternoon skies and dewy mornings met the sound of my shifting gears.

 
I remember flying down the street towards the quaint city park - a perfect slope which made the wind whip my unkempt ponytail as I sat back balancing without using any hands. This was obviously done with no helmet -
I mean this was the 90s. Time seemed to stand still. 

I am no stranger to time and its grip on my life. For decades I have heard the ticking of a time bomb as living with a progressive terminal disease like cystic fibrosis comes with its own soundtrack to life. One that accompanies every breath. Over the years I’ve become accustomed to its rhythm and might I dare even say that I feel a comfort in its familiar steadfastness - one that reverberates through my entire being. While the medical advancements in treating CF over the decades may have hushed the persistent grip of reality, it has never been able to silence my truth and its relationship to this progressive disease.

But, with medical advancements in the form of CFTR modulators (Trikafta, Alyftrek) over the last five years it has allowed me to breathe a bit easier. For a while, it gave me a stability that inspired a belief that I just might be given time. I felt like I could momentarily let go of the handlebars and simply glide for a moment - feeling weightless and carefree. I dreamed of a future I dared never entertain. I dreamed of not only seeing things, but living things. Things I’d pushed from my heart and mind while silently grieving a life I’d never be given the chance to live. I’d embrace the present moment while believing in a future I never thought possible. 

Then came the diagnosis of Pancreatic cancer. A reality that I could have never imagined. Not now. Not ever. I could have never prepared myself for such a truth. And just like that I was living a life I did not recognize. 

CF, however, a strange and familiar comfort during such a time of uncertainty. I understood CF, its progression, and how it manifests itself in my body. I was wrong to think that CF might lie dormant as I fought cancer and endured harsh rounds of chemo, debilitating exhaustion, and ultimately a whipple procedure. I look back over the last ten months and it’s hard to believe that it’s my life. Nothing, yet everything has changed. I have changed. 

CF did not lie dormant. Instead, it was emboldened by the depletion of my immune system and silently embedded itself into my demise - stealing the very oxygen I trusted to sustain me through this season of my life. While I have been able to get away from needing Sylvia (my O2 concentrator) when I am just sitting or being low-key, I still need her when doing any exerting activities like bike riding. It’s been a learning curve to get my body and mind to work together - pacing myself and not doing everything at top speed.

I look back at the last ten months and am grateful to be on the other side of it all. But, I can feel time slipping through my fingers. I feel its unforgiving grip around my throat as I feel a sense of suffocation. I feel a familiar, yet unwelcomed, “tick, tick, tick” coursing through my body - its strong pulse causing my heart to race and my breathing to shallow. I feel unsteady and untrusting.

I know the statistics of CF. I know the statistics of Pancreatic Cancer. Neither of them are generous with time and force you to live life in the in between. For most of my life the guidelines for CF care included check ups every three months. I have learned to overcome the anxieties associated with these frequent check-ins and not despise my body when it seemingly is failing me. Instead, I’ve done my best to embrace the space in between these visits and simply do my best to live. But in recent months CF appointments have become monthly visits as we clean up the mess left by months of chemo, surgery, and antibiotic resistant exacerbations. I’m so very grateful for a dedicated team who is willing to fight alongside me, no matter the challenges this body presents. 

So much of cancer still feels foreign to me. While the whipple procedure was as successful as it could be, my stomach churns when I think about the next scan. The future has become elusive again and I fear to dream beyond the in between. Moving forward, scans and oncology appointments will take place every three months. Something I should be used to, right? This should be simply “like riding a bike”, no? Then why do these knots in my stomach leave me breathless and gripping to the hypothetical handlebars of life? 

I recently got a new bike. It’s an e-bike, actually. I’ve only wiped out once and only managed to get my Oxygen tubing caught in the pedals a single time. I feel unsteady on it and unsure of myself. Where is that 12-year-old girl who could ride without a care and seemed to balance the whole world on the seat of a bike? She feels like a girl I can only wish to remember, let alone be. Brave, unyielding, bold, and carefree. 

So how do I live? How do I find a little bit of that twelve-year-old girl who didn’t understand or worry about time? A girl who wouldn’t realize until decades later that she was living for those moments of freedom set upon simple pavement. A girl whose time was written beneath a set of wheels - taking her places she never thought possible. 

So I live in the in between. Month to month. Appointment to appointment. Day to day. Moment to moment. Breath to breath. The ride that is my life may look a bit different and its path unpaved, yet it is beautiful and wild. This life will be what I make of it no matter the time because if there’s one truth I have come to know over the years is there will never be enough time. Never. 

For now I will climb back on my bike and simply embrace the journey that is the in-between. Love to you all.

Living "Sisu"

There’s nowhere to hide when you’re the one you’re trying to hide from. 

I know myself well enough to know that when my health isn’t what I want it to be, I retreat, go quiet, hide. But it’s impossible to hide from oneself when there are constant reminders around you and within you of the reality that is. Whether it’s tripping over oxygen tubing that is snaked around the house, my nasal cannula being clotheslined off my face due to getting stuck on a dog, or the deafening hum of the oxygen concentrator that now resides in our kitchen - the perfect spot that lets me reach from one side of the house to the other with my 50ft tubing. I can’t hide from that which is within me. That which is of me. To put it plainly, my truth is no longer invisible and by that I am humbled.

“Sisu” is more than a simple Finnish word. It’s a way of living that is difficult to translate into our common English vernacular. The etymology of its root comes from a word that means  “inner” or “inside”. It’s seemingly invisible to the naked eye. “Sisu” cannot be defined but must be lived. It is born of a humble inner truth and a courage to be.

Cystic Fibrosis is often known for its invisibility to the naked eye. To be completely honest, it is what has helped me mentally survive this progressive disease over the years. To feign normalcy and hide in plain sight. It’s also been a way in which I feel I’m winning the game. But, we all know CF is playing the long game and my odds at winning aren’t great. 

What causes pancreatic cancer to be one of the most deadly cancers is due to its invisibility - cloaked in indiscriminate symptoms and left unchecked to entrench itself into the livelihood of its host until it seemingly and silently has taken on a life of its own. Even when drastic life saving measures are implemented like undergoing a “whipple”, it’s not “if” but “when” it should return. I cannot outrun or hide from this storied truth no matter how badly I’d like to protect those I love from its reality. 

The closest translation we have in the English language to the word “sisu” is “inner strength” or “guts”. And, let me tell you, my guts are freshly diced and reconfigured. So, I must have extra sisu? Right? Or, wait, they removed a bunch of organs so maybe I’ve figuratively lost some guts as well. Invisible or not, seen or unseen, silent or verbose -  there are realities in which we cannot change. The landscapes of our lives are always transforming. We are transforming. It is our very lives that are courageously speaking and from that we cannot hide.

Do you hear and feel my life speaking? I hope so, even amidst moments where I'd rather hide myself from the world. To truly live takes great courage. My life in its completion will not be defined by words that were spoken but defined by the actions, “the guts”, my "sisu", that reflect the beauty each of you has graciously poured into this one great life. And for that I am humbled with deepest gratitude and inspired beyond measure to live this truth.

With all that I am thank you to each and every one of you that came out this past Friday night. Thank you to our dear friends who put together an unforgettable night rooted in such gracious love. You make this life absolutely priceless. There simply are no words that match the meaning of such a night and celebration. Mark and I are humbled beyond words. Your outpouring of love and generosity is present in every breath of this journey. We couldn’t do this without you.

Love to you all.

Reflected in the Hard Truth

As I look around this hospital room there are reminders of a life I wish weren’t a reality. Lining the wall are my suitcases which have rolled across these cold vinyl tiled hospital floors more than any exotic locations. There’s a sweet vase of flowers a dear friend delivered. The tiny blooms a much needed reminder of the simple beauties still alive and thriving in my world. A collection of water glasses litters my little side table. My therapy VEST, IV pole, Oxygen tank, and call button all within reach. The sum of my life can be seen in the reflection cast back at me from my room’s bay windows.

The radius of my life doesn’t span too far these days. This body? One I don’t recognize nor feel home in. But, it’s mine and it’s currently the only one I’ve got supporting me. It’s a disconcerting devastation when the person in your mind does not match the person in the mirror. Who is that girl? I think she’s supposed to be me, but this life is so unrecognizable in so many ways. One thing is familiar, however, the sting of its truth.

Three weeks ago, on January 16th I underwent a major surgery to remove my cancerous pancreatic tumor called a “Whipple”. This invasive ten-hour surgery removed the cancerous part of my pancreas, bile duct, first part of the small intestine, gallbladder, and several dozen lymph nodes. Thanks to my incredible surgeon, Dr. Ankeny, the surgery was deemed a complete success. But the surgery itself was only part of the challenge on this body. Recovery was going to be long and arduous. It was bound to test my stamina, patience, and persistence. It was bound to test the tenacity of my inner hope. 

I lay my head back in the shower and fold my arms across my stomach to brace my 10+ inch incision as Mark washes my dirty hospital hair. I can’t hold back the tears any longer as he gently washes the suds from my shedding locks. I see myself reflected in his eyes and I am overcome with so many emotions: sorrow, disbelief, gratitude, and a deep visceral love. What did I ever do to deserve this person who seemingly loves me no matter what? No matter the truth of who I am. No matter the circumstance. During my hospital stay post surgery, Mark never left my side. He was my shield and my protector. He also was the voice of reason to my maybe more than stubborn mind. If I would so much as flinch he was there to grab my hand and help me to my feet. He dried my tears and picked out my clothes. He encouraged me while being honest. 

Two weeks after surgery I was discharged to continue recovery at home. Home sweet home. Our home. My happy place. I felt ready to go home knowing Mark would be with me every breath of the way. As happy as I was to go home, I also knew it was going to be so hard.

Home was indeed hard, but wonderful. My breathing seemingly continued to get worse as I couldn’t walk across the room without becoming severely short of breath even on constant Oxygen. I wouldn’t be home two days before the trepidation in Mark’s voice and worry in his eyes told me we needed to go back to the hospital. So, those familiar suitcases were repacked and the 4+ hour trip was made to the ER at UofM where I’d sit for 76 hours before being able to get a bed on my usual 7B floor. (I was well looked after in the ER as I waited for a bed) Again, Mark never left my side nor ever made me feel like a burden or inconvenience. The first night in the ER he forbid to get a hotel room for himself knowing I was unsettled in the ED. I’d so much as flinch and he was right next to me asking what I needed or where I needed to go. When providers would come in and I’d be at a loss for words, he’d speak up and speak truth to compassion - giving an honest, and I mean honest, recount reflected in how I was truly doing. It wasn’t well. Me and my world suddenly feeling so small and obsolete. I didn’t recognize this person nor this life. It wasn’t until I looked beside me that I could remember who I was. It’s in Mark’s love I could recognize any part of myself or this life.

After being on IV antibiotics for 8+ weeks, we were at a loss as to why my lungs continued to fail me. In those eight weeks I became in need of wearing supplemental Oxygen. First, just for exertion as my O2 saturation would fall into the 70s. Now, I am needing it all the time. It doesn’t matter how much my mind tries to will my saturations to be normal, this body seems emboldened by its liberties and stealing my sense of autonomy. This body is not my own, nor do I want to recognize this life as such.

The ER was filled with a multitude of usual tests, questions, and outcomes. But the latest CT scan found an abscess in my lung. At least there was an explanation for the immense pain, feeling as if I was starving for air, and the exhaustion. This cavernous pocket embedded within my lung could be due to months of immunosuppression thanks to chemo, cystic fibrosis and the ever-present bacteria that call my lungs home, fungus, or a new bug that found its way into my lungs that was hitting them hard. It doesn’t matter how or what, it only matters if we can stop it from growing and get the infection under control. After another week of IV therapies we were hoping to see the abscess shrink in size. Sadly it instead grew, leaving us all at a loss with what direction to take next. 

We have chosen a new treatment plan with the great hope that this takes care of this lung abscess. All we can do is simply trust and have patience, all while still recovering from the major surgery I had only three weeks ago. But, I get to go home this week. Home to a place I can find some semblance of myself and this life.

I can’t think about it all too long or I might lose myself to it. It can be difficult to look at the future when it’s one you’re not sure that you want to recognize. So instead, I look to the truth of now and simply what is. I look to those who stand beside me. To Mark who stands with me, and at times, for me. In my reflection I see glimpses of myself and the person I will forever be, regardless of what’s happening to me. I choose to see the love that embodies this life and the gift it still is. It may hurt to look forward but I forbid to look back. I look only to today with a hope for tomorrow. A place where there is no space for fear. Only space for grateful love reflected in the hard truth.

Love to you all.

The Search for Answers and Air

My steps find a familiar rhythm as I walk this familiar hallway. Its long corridor leading me away from the main hospital to a different building where the hallways become narrow, winding, and the tile on the floor makes me feel like I've gone back in time half a century. But this time I don't venture into the winding world of labs, office doors, class schedules, and what I can only glean are prestigious and notable faculty name plates. This time, instead of passing through an open threshold I come to a new set of closed doors. There's a sign posted that says access now requires a badge and entry is limited. A painful familiar feeling washes over me. It is like the air is being pulled from my body. My mind wishing to wander but held back by the physicalities of this body. A stinging reality - my world suddenly and seemingly smaller. 

Only a mere decade ago, before Covid and before the all-to-common reigning threat of public shootings I'd lose myself in the maze of hospital halls and tunnels across campus. My IV pole a lamp unto my feet and my hospital bands a passport to belonging. In those moments was a sense of freedom that CF couldn't touch. I'd move from decade to decade as I'd pass through halls of histories. I'd imagine what it would be like being a student at UofM and studying medicine from my own care team - impassioned by a purpose of simply helping people. In many ways, fighting for and dedicated to returning a freedom forgone by disease, illness and unchangeable circumstance. A world paved with vast possibilities.

A year ago while in-patient at the UofM, after being away for many years due to circumstances of insurance, I set out one evening with my IV pole to walk the familiar and comforting halls I'd come to know so well. I was soon stopped, however, as a once open entrance was now a set of closed double doors with key card readers. The doors had a small window in which I could see the walkway I once would follow. I remember a familiar sting of sadness. Shut out. My world made a bit smaller by closed doors and forbidden pathways. 

Since coming home from the hospital in mid December, I regrettably found myself getting worse instead of better. I was struggling with continued lung function decline, fluid retention, and dangerous oxygen saturations when I was active. The day after Christmas I was admitted through the ER at the University of Minnesota knowing that if things continued as they were I not only wouldn't be cleared for surgery to remove the cancerous tumor on my pancreas but I'd be facing the progressive realities of CF's wrath. 

The world isn't becoming smaller, just my place within it is. Shut out by my own body. So, here we sit with many unanswered questions and a goal of simply getting me to and through surgery. As we search for answers along with air, we are also racing against time. Upon completion of my decided final round of chemo there's an optimal window of time to undergo surgery. The body needs time to recover post chemo to be in the best shape for surgery, but we can't wait too long otherwise we risk losing any headway that was gained. 

So, on January 16th I will be undergoing a Whipple Procedure. This invasive surgery involves removing the head of the pancreas, the first part of the small intestine, bile duct, and gallbladder. To put it simply, much of my GI system will be removed and reconstructed in hopes to remove as much of the cancer as possible and give me the best possible outcome long term. My world is feeling a bit tunnel visioned and myopic right now - a collection of narrowed unfamiliar hallways and closed corridors left in the hands of hope and a team of providers for whom I am so grateful. Today, I will follow wherever these winding halls and passageways are willing to take me - making the most of any and all thresholds that I am free to cross.

Love to you all.