Moms, Dads, & Diagosis

I have not nor will I ever have the chance to be a mom.

Of a human child that is. I realize I proudly own every sweatshirt, hat, and keychain that says, “proud dog mom” on it. In that case, I’ve been a new mom six times and loved every furry four-legged addition to our house. I also am grateful for Mark’s willingness to embrace the chaos of such a furry family and make it our own. *For clarity and to temper your thoughts that I am the crazy dog lady, we have only ever had four at once. I realize that last sentence didn’t help my case. For what it’s worth, the Ballou-Bonnema Dood Ranch is currently full. 

Now, we have friends who have so graciously embraced us as parts of their families and there’s no greater love than the love I feel for their littles. Or, not so littles as with every breath it seems ten years pass. Time and milestones I never thought I’d witness.  It’s one of life’s greatest gifts - to watch those you love become parents. It also is one of the hardest. Not because I still imagine what Mark and my life would have been like had we experienced having a baby placed in our arms for the first time, but because I see how difficult it is to be a parent. It’s the most important and most difficult job there truly is. It’s always been my greatest hope that our friends who are parents know they are not alone in this journey. That they are seen and loved for who they are and we love their littles because of them. 

I feel a lump form in my throat as I imagine my best friends holding their children for the first time. A moment I can only imagine. One that nonetheless causes tears born from grateful beauty to fill my eyes. In that very moment I imagine the world stands still because their world is right before them - filled with a realized hope and endless possibility. 

The hardest people to tell that I had cancer? 

My parents. 

No parent wants to hear that their child has cancer, but sharing this news with my parents seemed to represent so much more. It represented a devastation paired with unrelenting realities that I can only begin to imagine as a parent. 

My parents are no strangers to pain and loss when it comes to their children. Most of my childhood was spent watching them bear witness to the unrelenting realities of having not one, but two children with CF. How do you give your children the world when it seems the only world they will ever know dares to be stolen? I think about my parents holding my brother and I for the first time and my heart hurts for them and how such a moment of peace, possibility, and potential would be shattered. 

Twenty-six years ago this week my parents lost their first child to cystic fibrosis. There had been many moments during his brief seventeen years which were thought to be his last only to have his tenacity, vigor, and strength pull him out of the clutches of death for a bit more time. It makes my stomach churn thinking about what my parents endured every time this happened. Not only watching your child be a slave to a merciless disease but to watch them fight for every breath repeatedly has to be helplessly devastating to the heart and mind. Whether a protective mechanism or one of mere coping, I have trouble remembering much of my childhood. I do, however, remember the faces of my parents as we gathered next to my brother for his final goodbye. Nate, with labored breath, was the calm to CF’s tormenting storm. But the pain woven within the creases of my parents' faces, that’s unforgettable. I still see them today and I still see Nate's face as he did his best to console their pain.

Much of who I am today is because of bearing witness to such pain. I do my best to shield anyone I love from such hurt, but most of all my parents. I cannot begin to fathom losing one child let alone knowing the likelihood of losing another to the same disease. But, then came a morsel of hope - one in the form of three tiny pills that seemingly lifted the heaviness of death from every breath. (Please feel free to read my blog entries about the life-changing drug “Trikafta”.) There was a hope, whether naive or not,  that my parents could be freed of knowing such devastation again at the hands of CF. For now, it seemed as if we had time. That I didn’t need to be that silent burden bearing down upon the hearts and minds of my parents. 

In that too familiar of a hospital room reeling amidst the unfathomable news of cancer, I couldn’t help but think of my parents and how I could possibly tell them. All I could think about was how unfair it all seemed to be. How brutal and unimaginable for them.

They were my last phone call and one I couldn’t do alone. I couldn’t keep the tears from flowing as I told them in broken words between uncontrollable sobs that their daughter had pancreatic cancer. Mark, gripping my hand, would interject in strength and poise as I seemingly tried to grapple with the pain I was unintentionally unloading onto my parents yet again. The only words that I could say was, "I'm sorry." I imagine in the 1980s what the words and diagnosis of “CF” felt like in the lives of my parents. It was deadly in many ways, to say the least. Like a bomb exploding amidst that perfect idealized family everyone is conditioned to dream of and strive to unconsciously emulate. 

That morsel of hope we’d known for the last few years? I just dropped a bomb on it. Again. I can’t help but imagine them holding me for the first time and dreaming of all of life’s grand possibilities. My reality is one a parent should never have to know, let alone dream for their child as they hold them within the hope of their arms for the very first time. 

I can’t change the reality of CF or cancer but I can promise that they will not suffer at the cost of my truth. I have been blessed with two sets of parents plus my wonderful in-laws. I hope they all know that the tenacity, strength, and gratitude I dare move through this journey with is one born from each of them and their love. That regardless of circumstances I could not do this journey without the person they’ve shaped me to be. And should my journey end sooner than we all hope, I hope that I leave them feeling most proud to have had me as their daughter. 

Hug your babies, the furry kind or human. Love to you all.

*Round 6 of chemo complete. 6 more to go. 

Falling Leaves & Letting Go

There’s a familiar sadness I feel as I stare out the window of this coffee shop and see colored leaves desperately clinging to their branches. They seem so delicate. So fragile. They represent a season of change.

While this body isn’t one I’d recommend, I am constantly in awe of all it is able to withstand. This body is strong. Sometimes it surprises me and I wonder if it’s something that is built, cultivated, or just born unto you. I don’t mean physically strong, but the strength it has to endure the brutality of disease, of treatment, of survival. I ask myself frequently how can the body be so strong yet the spirit at times feels so fragile? I don’t let myself linger there for long as I know that no answer will pacify my spirit’s remorse or change the circumstances of this season. 

Hues of golden amber and vibrant yellows seem to sparkle against the sun as the wind touches every leaf. Colors glimmer against nature’s robust breath. It’s as if mother nature has been waiting to exhale and for the first time we see her in Autumn’s radiant change. 

I know CF’s change. And while I can’t predict every move and unfair shift in my CF’s progression, I understand it. Whether I want to or not. CF and I have lived together for over thirty-seven years. We’ve come to live together despite change, despite disease progression. I might even say that CF has let me live -  allowing me to truly see and experience the beauty life has to offer. The gift that it truly is. (Also, shoutout to my incredible care teams and support systems who have also helped me live this beautiful life.)

But, cancer. It seems so different. It seems so heavy like a cloak of rain soaked leaves bound together and pulling me towards the chilly earth that lay beneath my numb feet. It still feels so foreign.

We have completed five rounds of chemo which means we have seven more to go. I hate to admit it, but they’re getting harder. Physically and mentally. Soul sucking exhaustion that makes my body feel so heavy and drained - a feeling I am used to merely pushing through but find cancer and chemo’s exhaustion almost impossible. Amidst all of these treatments and appointments locally, we’ve made several trips within a given week to see my Oncology and CF teams in Minneapolis as well as a visit to replace Penelope, my portacath of seven years that decided to fracture. 

But Autumn’s radiance doesn’t last. The glimmer fades and every few seconds that rustling wind takes captive one more leaf - whirling it about in unpredictable splendor as it finds its way to the ground. One more leaf has sung its final swan song. It could no longer withstand the wind’s clawing grip and the leaf was forced to let go from its branch. 

In my backyard it still looks like summer, but there are little signs everywhere that the season is amidst change. I see it when I leave the safety of my little home and venture out into the world. When I look out my front window. When I listen and hear the unmistakable rustling of weathered leaves amongst the trees. One that if you close your eyes can be mistaken for gentle and repetitive waves as the fragile leaves do all they can to hang on for a bit longer.

My life doesn’t feel like my own no matter how I try to hang onto it, nor do I feel like myself. Who am I amidst all of this? I feel just like a girl trying desperately to live this one wild and beautiful life while trying to balance the two sides of the scale called CF and Cancer. I cherish the sweet moments that make me feel like myself. The moments that the winds of CF or Cancer aren’t pulling at me from every direction as I do my best to stand strong in remembering who and what I am. That I am more than this.

There’s that sadness again. The kind that silently grips your insides and leaves a knot in your throat forbidding you to speak of it. It’s a loss you feel so deeply that no matter how many times the season is gifted to you it never gets easier. If anything, the pang of hurt becomes more palpable. Like a heartbeat. A heartbeat you see effect so many you love.

But maybe it isn’t that the leaves are fragile and delicate at all. Maybe they’re what’s strong. They’re what is brave. Maybe it isn’t the wind that rips them from their branches but that the leaves finally let go and simply trust - giving rest to a season of hope that when the sun’s radiance finds its first warmth once again so will new life unfurl. 

I am amazed at this body and how much she can endure. How far she can be pushed. I am not sure if that should make me proud or if it merely makes my heart heavy with sadness. I do my best to remain grateful to her as she has borne the brunt of so much. But she is strong. She is resilient. And she has been so good to me.

My latest scan showed no significant change in the tumor on my pancreas. With that said, this can be viewed as good news. It’s not growing, it has not spread, and we are still early in our treatment course. However, chemotherapy is doing a number on my lungs and my liver numbers. It’s all a delicate balance as we fight not only one disease but do our best to survive the other. Out of control liver numbers could put me in a position like I was this summer where I was unable to take the CFTR modulator that has extended my life and health by slowing my CF’s progression. This drug is metabolized in the liver and therefore can cause more undue stress on the organ putting it in jeopardy. While being off of this drug in June/ July my CF symptoms came flooding back and my lung function drastically dropped by 16% in just seven days. I was back to drowning within my own body and there was nothing I could do to stop it. Thankfully, after having the ERCP my liver numbers stabilized and I was able to begin taking Trikafta again and my numbers somewhat rebounded. Unchecked lungs also means the antibiotic resistant bugs that call my lungs home have the potential in my depleted immune system to wreak havoc.

The leaves tell me that it’s time - time to be present, time to let go and time to simply trust. They tell me that amidst this season of change there is still so much beauty to be had. That it takes bravery to embrace the unknown and simply trust the wind will guide you, hold you, and help you embrace whatever the next season may hold.  Love to you all.