A Bird and Cancer

There once was a bird named Resilience. 

She loved to greet each new sunrise with a song and watch the setting skies turn into a cacophony of painted impressionism as stars pierced through a canvas sewn by fireflies. 

When the ground beneath her feet seemed unsteady and foreign, Resilience knew the only option before her was to learn how to fly. The warmth of the sun kissed sky would sweep her up over every cumulus cloud - weightless with reckless abandon. It’s only at such heights she could see this was a gift that came in the form of a vista. Would she have ever had the courage to fly if it had not been for sinking sand? 

When the skies bore an unforgiving cry, Resilience closed her eyes and hoped the rolling soft waves beneath would catch her - cradling her like a softspun lullaby sung from the turning tides of seas below. Or, if the waves did not hold, she’d surely learn how to swim. If the skies had not fallen out of favor would she have ever dared to taste the saltiness of the sea?  

 

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In early July, while gratefully recovering at the University of Minnesota from compounding liver complications, it was discovered that I have Pancreatic Cancer. 

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There once was a bird named Resilience. She loved to sing and would dare find there was always something good to sing about. But lately, those songs have seemingly found a chorus of cries. A few tears shed for herself, but most set as an uncontrollable spillway for the abundant love in her life that stares back at her. Each tear representative of the heartache, pain, and loss she continues to cause by the content of her composition. 

As life has taught me over these thirty-seven years, I was where I needed to be when I needed to be during all of this. If it had not been for the sudden onset of Liver and Bile Duct complications, my diligent and caring research team at Sanford along with my attentive, unwavering teams at University of Minnesota, this latest diagnosis would have never been caught at such a stage. For each of them I am grateful beyond words and know I owe my life to them. A familiar yet humbling place to rest amidst a harsh unwanted reality.

I had wished for the harshness of such a reality to find its numb place within my resilient spirit as I tried to hold back tears while coordinating a new world of referrals, oncologist/ GI appointments, PET scans, labs, chemo schedules all while trying to find the words to tell the people I love. There are only a few times in my life that I have known such hard tears: saying goodbye to Mark when we moved apart during Covid, saying the final goodbye to our first dogs, and facing the harsh unfair realities of CF ten years ago. It’s a cataclysmic schism that tears your soul in two and leaves every cell of your being laden with a restless ache that never seems to recover. You can mend the halves back together but it will never be the same.

After a meeting between all the brilliant, caring, and tenacious minds that represent my CF team and Pancreatic Oncology Team at the University of Minnesota and the Oncology team at Sanford in Sioux Falls, the best case plan was composed and a date was set to start this new journey. All in hopes it would be timed to leave me feeling my best for preparations and performances for our Breathe Bravely Backyard Bash.

Well, sometimes life happens. Instead of starting chemo I would test positive for Covid and our best laid plans would be delayed. Finally, on Monday, August 5th I received my first round of Folfirinox - a hard-hitting chemotherapy combination used to treat Pancreatic Cancer. If this body proves its stability and strength, my second round of chemo will begin again on Monday, August 19 until Wednesday, August 21.

The plan: 12 treatments in 6 months. Or, one round every two weeks. This consists of three different drugs: fluorouracil, irinotecan hydrochloride, and oxaliplatin. Two of them are administered at the Oncology Infusion Center within a several hours and one of them is sent home via continuous IV Pump (an old friend with whom I am very familiar sleeping). Good thing I’m married to my favorite infusion nurse. ***Just kidding, OCC & Oncology nurses, I love all of you!

I know what you’re all wondering. “Ashley, what’s the prognosis?”

My dear friends, if CF has taught me anything over the last three decades it is that we take life breath by breath alongside a hefty shot of hope. We do the best we can with what we are given, however that is given. I wish I weren’t writing this post. I wish more than anything I wasn’t the source of tears in the eyes of my love, my friends, my family. But, there will always be unchangeable circumstances that come with unfair expectations. We take this latest journey one treatment, one scan, and one day at a time - doing our best to be grateful for every ounce of every moment that is gifted. 

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I used to think that “resilient” meant turning towards the fight and having the strength and stamina to endure all it had to give - collecting lessons, scraped knees, and survival skills along the way like badges I’d need my mom to sew onto my Girl Scout Junior sash.

But I’m beginning to believe Resilience wouldn’t fly into the storm. She’d turn, stretch out her wings and let the force of the storm’s raging winds and battering tides be her strength - carrying her across the landscapes of this beautiful life. 

Love to you all.

Invisible - the silent truth of CF

It is a surreal time to be living with CF. To say there are a multitude of emotions I feel within a given day would be an understatement. Maybe it is the grateful vantage point I get to hold because of the dedicated work of Breathe Bravely - immersed in a community as vast as the night sky yet connected by a prescribed constellation called CF. Much of our lives have been held within a hope, a wish, that our live’s storied truth might be changeable. That our course might be charted along a different set of stars other than the one set within our genetic code. 

And for many of us that course has changed, evolved, and transformed beyond the perceived limits set by unchangeable circumstances. After all, I am writing this very message because of a hope, a wish, and most of all, a commitment to action by a greater community to never give up. Over the years there’s been much to celebrate. Advancements, breakthroughs, and a tenacious spirit that has given more todays to so many of us. But by sheer definition a celebration fails to hold such value without knowing the weight of loss, heartache, and hopelessness. 

How does a person make sense of all of these emotions within themselves, let alone try and make sense out of it for a greater community? After all, I believe I can speak as a person living with CF that we simply want to be the good news, to be the living hope so that we might universally live in the unchained euphoric ethos of celebration - a place where no individual, no family, no community might know the exhaustive devastation that can come from cystic fibrosis. 

While there are so many variables when it comes to CF, there’s a single absolute that I’ve come to know alongside this disease. It’s that alongside progress, advancements and milestones it becomes more difficult to tell the encompassing story of CF. From a single diagnosis comes 90,000 different stories, circumstances, and evolving truths. Disease, diagnosis, genetic mutations, manifestation of disease, accessibility, support systems, and sometimes simple luck are what manifest our realities. The unknowns are our only constant. 

LIVING MY TRUTH

I spent many decades in my life running from CF and keeping any signs of it hidden the best that I could. I knew this disease only as something that brought immense pain and heartache. And then ten years ago on April 1st, 2014 because of the increasing unavoidable realities of this disease paired with unrelenting voices of support I opened up my life and began to share my truth. Little did I know that in doing so such truth would bring about some of the greatest meaning. Over these last ten years alone, CF has played quite the role within my life. If I allow myself to reflect long enough on the time dedicated to this aspect of my story there’s an unavoidable and overwhelming sense of sadness. A quiet reality that can be measured in months of IV antibiotics, hospital stays, test tubes of blood, airway clearance treatments, hemoptysis (coughing up blood), medical debt, tears, pills, antibiotic resistant “bugs”, and altered plans. Despite these unchangeable circumstances there has been so much beauty. While I’d trade the pain this disease has caused the people I love in a heartbeat, for myself I wouldn’t change a moment if it meant never knowing the depth of love and abundance of good this life has to give. And within this last decade there have been moments of realized hope. Moments worthy of unparalleled celebration, gratitude, and unbelievable awe. 

I also recognize how difficult it is to witness a life lived with CF and how much strength and endurance it takes as someone breathing beside us. That is not lost on me. I see how desperately the people who love us want us to know a life of peace, healing, and freedom. It’s one thing to endure unchangeable circumstances but it’s another to see how it affects the people you love. At times, I feel that’s the worst part of it all. It can feel suffocating with the amount of hope one feels they need to hold in order to somehow protect the people close to them. “Chronic” and “progressive” are words that have accompanied my life for well over three decades, but just because they’re familiar doesn’t mean they’re understood. I’ve found at times it’s just easiest to hide behind silence and a smile. 

WAITING ON A MIRACLE

As many of you know, on October 21, 2019 a quintessential drug called “Trikafta” was approved for the most widely common mutation of CF. Individuals had to have a single Fdel508 mutation to qualify for eligibility. 90% of individuals with CF have at least one copy of this mutation. I, gratefully, fell within the cohort of individuals who have a single copy of Fdel508. I remember that day so vividly. The phone calls and uncontainable feelings of joy. To tell people that you love that their hope has been realized is unlike anything else. To tell them that the tomorrows deserved by so many are not only a dream but a true possibility. It is unimaginable. It was a beautiful moment filled with so much opportunity and charted a course of possibility within all of science. One that has changed so many lives. 

Have I witnessed such a drug transform the lives of friends, students, and community members? Yes. Is it a beautiful gift to see hope realized and people you love within a community become who and what they never thought possible? It’s hard to find the words that adequately convey the impact of such advancement. There may be 90,000 different CF stories but one thing is true amidst them all - we all hope for a future world without CF, not simply one where it is “invisible”. 

I gratefully had the opportunity to begin taking Trikafta January of 2020. I tempered my excitement and expectations alongside a quiet pleading hope set behind a smile - a hope that my own experience with Trikafta would be what my loved ones needed it to be. Maybe, just maybe, unchangeable circumstances and trepidation for the future could be transformed into a tapestry of tomorrows where the moon feels within reach. Or, at least be a hope-filled reminder of progress, evolution, and possibility. To simply never give up hope. 

THE ART OF SILENT CHANGE

Did such a drug change the course of my life? Absolutely. Has it written pages within my story that I thought were impossible? That is undeniable.
To be present for your own life. To wake without drowning. To actually feel an embrace from a loved one for the joy it gives rather than one that is rooted in worry. The kind I’ve known for so long in which you can feel fingertips desperate and silently pleading - holding on to dear life.
To meet the eyes of a friend and not worry your gaze will give you away. To have CF truly “look” invisible to the naked eye. I, too, almost let myself believe it. After all, I’ve had decades of practice doing so. And life did change, for a while. For a while the wake of CF had calmed. I had hoped such tumultuous tides would forever be a memory. It's amazing how today everything can be so familiar yet different. Whether it’s because of time, experience, endurance, or a drug… in many ways I have changed and this journey with CF will continue to change.

Over the last four years it’s been easy to slide back into a place of silence when it comes to sharing my life about CF. After all, during such a time we all needed something to believe in. We needed those glimmers of hope and stories of redemptive truth. For many of us during that time, hope is merely all we had. I realize just how much of a privilege that is. 

To be honest, I have found silence to be a place of comfort rather than fielding the weight of disappointment. A disappointment and loss that I feel like I am responsible for, as ridiculous as I know that sounds. And maybe silence is easier than trying to find the right words to describe the changes I've endured. Will people think I'm crazy? That I want to be sick? What if I am crazy and I'm really just fine? I don't want CF to be my life again. My mind is a noisy place no matter the stoicism of silence. Recent conversations with loved ones have led me to realize that this comfortable place of silence is actually doing no one any good. While my story is different, my story is also connected to so many other people I love within this community. Their story is my story, and mine theirs. Silence doesn’t promote progress, nor does it protect the people I love. Invisibility can simply be a false sense of realized hope. 

A BIT OF TRUTH

So, here’s my truth. Over the course of the last six months many realities I knew prior to Trikafta have returned: large episodes of hemoptysis that have required embolizations, weeks in the hospital at the University of Minnesota, months of IV antibiotics, mind numbing side effects, treatment upon treatment upon treatment, insurance headaches, never ending medical bills, and many altered plans. And, it’s pretty clear that this will continue to be my reality. The truth is that I still have CF. That no matter the stability and moments of “quiet”I have been afforded over the years thanks to CFTR modulators (Trikafta, Vanzacaftor, etc) and other medical advancements, this body is still riddled with the unforgiving circumstance called “cystic fibrosis”, and it always will be. So, why do I share this now? To be honest, I’d much rather live within the comfort of silence, and avoid being the reason for any pity, worry, or disappointment. Because my life is beautiful, it’s abundant, and there have been changes that have made me better. I share this with you because silence doesn’t save anyone.  Silence doesn't change my own truth; the facts. While the sky may look different when you look up during different times of the year, the stars themselves are always present. CF continues to be a devastating reality within the lives of so many of us. Within the lives of my closest friends. My community. Your community. It’s anything but invisible to those who daily feel its presence hidden within an unspoken hope weighted within every breath. Whether it’s because of age, disease damage, accessibility and eligibility, and our mere genetic makeup, CF continues to demand our exhausted attention and unwavering strength - all while holding onto hope.

THE CONVERSATION

I ask you to keep fighting alongside us - for us. The conversation isn’t over nor is CF something of the “past”. Whether it’s a renewed commitment to the cause or merely being a part of sharing its diverse story, I ask you to join me in fighting for possibility.

If you’d like and are in the Sioux Falls area, The Cystic Fibrosis Foundation’s Great Strides is taking place Saturday, June 8 at Riverdale Park. Or, simply give a donation to the Cystic Fibrosis Foundation in honor of hope. While, yes,  our ultimate goal is to find a cure for cystic fibrosis, there are thousands of people living with CF holding out hope for medical advancements that can combat the continuing damage of this progressive disease. We walk not only in pursuit of a cure, the research and formulation of new antibiotics, phage therapies, and gene editing, but also for the hope that fuels the possibility of more tomorrows. Tomorrows for EVERY unique person and EVERY unique STORY in EVERY CIRCUMSTANCE.

Join Team Ashley or donate to CFF

https://fightcf.cff.org/site/TR/GreatStrides/80_Minnesota_Minneapolis?px=1821624&pg=personal&fr_id=10485

Love to you all.

Lucia & Life Expectancy

Thirty-seven candles. It can cast quite the radiant glow. One might even say that with each additional candle it gives us the opportunity to see what lies further before us while lighting the path from which we came. Each additional candle inspires an unmatched joy within the eyes of those who are most grateful for such a day. 

December skies & Lucia Lullabies 

December knows a darkness unlike any other. But beneath the crisp clear dark skies of the winter solstice lies a silent hope. A hope that is born from the smallest spark and has the power to pull the senses to safety in a sea of disorienting darkness. It’s that flicker of light we hold onto during the darkest days of this season - guiding our steps and giving comfort to our restless searching souls.

My newest arm artwork- Saint Lucia

On December 13th, just a day before my birthday, the celebration of Sankta Lucia is observed around the world with large celebrations taking place across the Scandinavian countries, more namely the one that is closest to my heart, Sweden. Various stories and traditions surround the mythical figure of Lucia but themes of light and service are at the core of each. In Sweden specifically, Lucia is a symbol of light amongst the dark days of winter. A Festival of Light, St. Lucia is a celebration of the light to come and of light returning to the world amidst winter’s darkness.

And within that very light a hope we endlessly seek.

Lucia, adorned with evergreen upon her head, balances a crown of candles all aglow. She sings a familiar song that echoes through the hearts of her humanity. Bravely, she moves forward into the darkness, one step in front of the other, her arms outstretched embracing the world around her, she bears a light that illuminates a hope set against a season just waiting to see the spark that ignites a new day. Watch and hear the procession here: https://www.youtube.com/watch?v=9LAhw7dqkuc

LIfe-Expectancy

To be completely honest with you, this birthday has been one that has lived within my mind since before I can remember. For many of us in the cystic fibrosis community the number thirty-seven was one we grew up hearing frequently. That number represented progress, potential, and proven hope. It was a light in a world darkened by a disease called CF. During my teenage years and up until just a few years ago the median life expectancy for someone born with CF was thirty-seven years old. “Median Life Expectancy” is a vast and complex web of “what ifs”, luck, and limitations that are not meant to define any individual. Instead, it’s data driven hope made possible through the pursuits of those who forbid to give up on our community. But when much of your life has been set alongside a ticking timeline of life-expectancy, one can’t help but view each added candle with a bit of urgency and anxiety. 

Beginning around the age of sixteen,  whenever December 14th would arrive on the calendar, two conflicting thoughts would permeate my consciousness:

1) I made it! (These three words would become “WE made it”. Afterall, I wouldn’t and couldn’t be celebrating such a day without so many of you). My heart is overwhelmed with gratitude and a depth of love I never thought possible. 

2).” 37”. I’d quickly do the math subtracting the new age from that number - leaving a part of my heart with a heaviness that I had tried all year to forget. A heaviness I’d do my best to hide from the rest of the world.

And then a spark of hope was realized in the form of luck and timing. In 2019, the drug called, “Trikafta”, a genetic modulator would dare to rewrite so many stories and make the improbable burn bright with possibility. For a mere moment I let go of 37. I let go of a narrative that suffocated the embers of envisioning a future beyond this decade. For a while it seemed as if CF was a stable, but silent role in my life. One that let me live parts of a life I had only imagined. A life that wasn’t written in breathlessness but forged by abundant will. A life every person deserves.

Thirty-Seven

Post Embolization

So, it seems a bit surreal that I should wake up in a hospital bed on my 37th birthday - port accessed, IVs administered, and awaiting an embolization (a procedure used to stop and prevent the lungs from hemoptysis, or bleeding of the lungs). This year’s “Happy Birthday” was set amongst the various irregular beeps and pitches of IV pumps, vital signs, and ID scanners and its time kept in rhythm to the repetitive shuffle of shoes and the proverbial song of blood draws and port placements sung to  “1, 2, 3 poke”. It’s amazing how the familiarity of this life comes back, even if it’s one you’ve tried to extinguish from your memory. To be honest, I’ve silently felt this stability slipping away from me for some time now. It’s been hard for me to want to believe it. This body feels so unfamiliar, so foreign, and I’ve wanted to live in the familiar place of denial I knew for so many years. The place that I thought let me “live”.

As a 37-year-old I write this post from a hospital room on the 7th floor overlooking the Mississippi River at the University of MN. I  feel a deeper gratitude and love than I thought I’d ever know. As I look out my window at the world, I am reminded that we all seek the same light. We hold our breath as the days grow shorter, colder, and more unforgiving. We hold onto hope - waiting for the days to grow in illuminating grace when we can say “we have made it.” 

On this 37th birthday did I awake to the same two thoughts? Without fail.

We cannot know the power of a single flame without knowing darkness. We cannot feel the joy and warmth it brings without feeling the encompassing desolation of life's proverbial winter. We cannot truly know the realization of hope without daring to embrace the truth within ourselves. That truth illuminated by the light that lives within. That very light lets each of us bravely live within each breath no matter the number of candles that light the way. I only have one request - please make sure to place the candles on top of my head in a crown of evergreen so that my arms may be free to embrace the greatest gift my life has ever known - each of you. Love to you all.

PS - Thank you everyone for the meaningful birthday wishes. They mean so very much. Also, good news! I just got the "ok" and am headed home today to Mark and the hounds.

A Trial of Change

The greatest tragedy in life is not born from the absence of living but from living a life enslaved to distraction. We exist within a restlessness that endlessly is seeking answers to questions we don't have the words to say. That restlessness slowly numbs the senses and we begin to simply exist while the ache within our soul seemingly grows more and more each day. We feel it, but simply press on chaotically in search of the answers and purpose we seek which in hope may calm our mind, heart, and spirit. That it may expose the belonging we seek within ourselves - a contented vulnerability in which our truth might enliven every sense - making us feel most alive. 

But distraction can so often look like living. Its chaos can consume us and its busyness exhaustingly and falsely invigorating. It becomes something we can quantify, measure, and paint as purpose. 

But in a single moment it all can change. Something finally catches our eye in which makes us look up and suddenly see the world differently. The world seems to stop for a brief moment. For the first time in a long we feel the air drenches our lungs and fills us with life. We simply breathe and at that moment we know that's enough. That we step out of the chaos. We feel an unexplainable change - a peace washing over us and through us. Our senses awaken. A vulnerability exposed. Our truth set within us and before us by the change that surrounds us. 

That change is in the air and literally all around us. No matter where we look signs are silently alive - waiting for us to pay witness and give reproach. It's up to each of us to take the lessons composed in such change and allow ourselves the freedom to be transformed in unexpected ways.

28 days ago I began a journey at Yale New Haven Health cleared to enroll in the Cystic Fibrosis BacterioPhage Study at Yale [CYPHY] Feel free to read my last entry to find out more about the study. I have walked the streets of New Haven more times than I can begin to count, I have strolled the stone walkways of Yale's campus and bathed in the streams of sunlight that warmly pour through the centuries old towers of stone - painting an ever changing masterpiece alongside the breathtaking architecture.  I also had the great gift of seeing parts of Cape Cod with a dear friend as well as Mark making a trip out East and together exploring the Catskills area of New York and making memories with friends in New Jersey. The beauty of such grace and memories is not lost on me.

In the last year and a half I minimally left the safety of our home's walls, seemingly locked away within a privileged tower. Or, as many of you know I have called it my "Polly Pocket" House - everything I could ever need under that little roof. Enough room for me and the dogs, and Mark when he moved back in with us  - deciding together that his endless absence to keep me safe wasn't worth the unknowns of time we seemingly were wasting living apart. So, as I walk these streets multiple times a day I can't help but take in the splendor, freedom, and awe of living outside such towers. And most of all, the gratitude that fills every cell of my being for the opportunity to meet and be around so many wonderful people. 

When I reached out last May to the team at Yale to learn more about the CYPHY Trial and see if there was even a slight possibility that I might qualify, little could I have ever known that the hope I was silently seeking would be given and shown to me in the most unexpected ways and of places. I am going home to South Dakota tomorrow after 28 days here  - changed beyond measure. A change that might be unrecognizable to most but one that lives and breathes within me. Being gifted this opportunity to be a part of this study, to simply be here, has changed me in more ways than I could ever possibly begin to put into words. I'm leaving with a peace I thought wasn't possible, a quiet hope so much greater than imagined, and a gratitude rooted in a belonging that will only ever be found beneath the bluest skies my eyes were freed to see. The world is changing all around me. Over the last four weeks I've watched the leaves turn. As I sit writing this, leaves begin to silently and unassumingly fall from the trees beside me - landing atop my head and atop my keyboard. Students, faculty, and others undoubtedly like myself walk with blind determination - distracted by the stress and self assumed expectations assigned by the world around. 

But, I see them. The people, the leaves, and the color of the sky. I can't tell you how many times I've clutched my chest and held back tears because everything just seemed so beautiful - the silent details of a world I'm grateful to be a part of is simply so remarkable. Within each falling leaf, in every stone beneath my feet, and in the chiseled details of soaring arches I'm reminded that the present is where we see the beauty, it's where we find our truth. It's in the present moment our souls are freed to find change - the change we have been unknowingly seeking. The change we need to truly live. 

For seven days straight I inhaled the study drug/placebo - charting any symptoms I felt or disclose anything that had changed. Following that first seven days I have been having weekly appointments with the research team reviewing any changes, my overall experience, doing PFTs, Lab draws, and giving them some "goods" from my lungs. Over the next five months I will return to Yale for a few quick appointments just to check in. Following that time we will learn which group I was a part of - the placebo or the phage. 

Has this month away being a part of this study been worth it? I don't know how to answer that because how do you quantify something that has been truly priceless? I cannot possibly find the adequate words to convey the depth of my gratitude towards the care team at Yale.  The opportunity to witness their passionate brilliance, be on the receiving end of their genuine and warm care, and be infused with their hope-filled determination will forever leave me changed wherever the days ahead may lead. CF will always be a part of my story. It will always be a part of my past, my future, and most of all, a part of my present. It is not my tragedy. It is my truth. One in which has been a catalyst for finding peace within my present. A truth that will forever allow me to see the peace-filled beauty in every breath - renewed by a gratitude that can only come from grace like that in which I've been shown over this last month and throughout my life. A grace born from trials of change.

For more information about Phage therapy and the CYPHY study I highly recommend this conference session which is led by the lead research scientist (Dr. Chan) and lead research investigator (Dr. Koff) that I have had the privilege to work with over the course of this last month. https://www.youtube.com/watch?v=MNMK_Scl6so...

If you'd like contact information to inquire about participation in the study let me know and I'd be happy to share.

To read the previous blog entries visit www.breathebravely.blogspot.com

The Past Meets Progress

I dare to say the entirety of our lives boils down to a motivation to find the answer to one simple question: what are we seeking? Each season, each step, each decision is composed within the air of a question and motivated by an unspeakable yearning to find a balance, a harmony. A place in which the person in who we are is embraced by a silent steadied faith in who we are becoming and that in which progress has left a memory imprinted within our cells. 

How do we find such a place? Will we know when we have found it or is it merely a state of mind? One in which harmony is found only within the act of seeking in and of itself? 

Every which way my feet take me on Yale's campus this mere idea of what we seek to find lies within life's balance bounces back at me from the over 200+ year old stone buildings set amongst a rhythm rooted in progress. I find myself feeling strangely at home as I walk the stone paths set between spires - a strength not only holding up a history but laying a foundation and stability for the restless to safely seek. One in which allows the past to be married with progress, allowing a peace to inspire a clarity which holds the living hope of the present.

On Monday, September 13 I was cleared to begin the CYstic Fibrosis BacterioPHage Study at Yale [CYPHY]. I began talks with the clinical study team at Yale back in May in regards to this possible opportunity and eligibility. I have now been in New Haven a full week and will be here in total for 30 days. I am grateful beyond words for this life changing opportunity, whatever may come of it.

What is Bacteriophage? Bacteriophage is the utilization of viruses to combat bacteria. So, in this specific study a specific Bacteriophage is matched to a specific pseudomonas aeruginosa strain in hopes to combat the colonization, sputum load, and virulance of the bacteria. For individuals like myself who have come up against the issues of antibiotic resistance alongside a host of risky side effects, this possible avenue for treatment is rooted in a hope for tomorrow. For more time. To not only find the harmony but sustain it for a time. The team at Yale is astounding and most remarkable. But, most of all, they are passionate and genuine about their commitment not only to the progress of combating CF, but their investment into the person behind the pathology. For more information about the study and phage visit: CYPHY and About Phage - CFF. The amazing thing about Phage therapy is that these advancements won't only benefit individuals within the CF community but every person combating surmounting antibiotic resistance and so much more.

The CYPHY study is a double blind study which means I could be given a placebo or the phage therapy. We do not know which I am given. The treatment comes in the form of nebulization once a day - something that is already a staple in my life several times a day. This addition takes place for seven days straight. The clinic monitors any changes alongside PFTs, labs, and symptom reports. Following those seven days I will be seen weekly. After a couple of months, the study will be unblinded and we will know whether I received the phage or placebo. Again, whatever the days ahead bring I am rooted in a gratitude that is immeasurable. 

What does this experience represent to me? As I sit here next to one of the oldest buildings on Yale's campus, writing about a therapy that is older than the use of antibiotics (over 100 years old) l am met with an unusual contentment woven within a progressive hope. I can't help but feel a harmony set within every breath as the past meets progress giving me the gift of the present. As I complete my third official day taking part in the study I can't help but want to hold onto this feeling of peace, progress, and renewed hope. This present will become my past at some point and it will forever have impacted me for the better - whatever that may look like. For a moment at least the restless chaos within me that is ever seeking an assurance of tomorrow is at peace. It's still seeking but it's also embraced by a steadfast history that surrounds me. If those buildings can tower above the earth so mightily with immoveable strength, so can I. The balance between is what allows me to stand tall. To stand for and with my friends and community living with CF. May the progress that is yet to come be one that leaves my dear community enlivened with hope by the mere journey of seeking. And it's in the seeking we are given hope.

Great love to you all. 

Please feel free to reach out to me if you are interested in more information about the study or my experience. Or, for more information please contact Claire, the research coordinator for Yale, at claire.cochrane@yale.edu 

Also, please join us on Tuesday, September 21st for "Sing it for CF : A Marathon of Song" - twelve hours of giving voice to CF. Tune into the  Breathe Bravely Facebook page to hear the amazing voices of singers from the sINgSPIRE program and other amazing artists in our CF community. It's going to me an amazing day.

Hope in New Haven

A few years ago on an unsuspecting late summer evening at the farm with Mark, I walked along the side of the grove as I often would do while he was busy working - walking beside a living history that had seen and withstood more seasons than I could merely ever dream to know. One foot set in front of the other, I followed an unsuspecting path left by the tires of a tractor. A path pressed into the earth and laid before me - leading me in a direction in which would uncover one of the most meaningful and beautiful experiences in my life. It continues to serve as a reminder that the most simple of moments, those moments of mere chance, can hold the greatest unsuspecting lessons and be the most priceless of gifts. 

As I walked through the grove that evening hundreds of Monarch butterflies flew around me, beside me, and amongst the branches. The Monarchs were migrating south for the winter - a sight I had only heard about but had never experienced. Growing up, seeing a single Monarch was always something so incredibly special. It always felt like a gift to see one. There seemed to be some sort of magic in each sighting - even if just for a fleeting moment. Their wings drenched in such unmistakable and unsuspecting beauty in which is silent and never seen unless your attention is held within that single moment - pulled from the alluring chaos of a blurred and busied life. 

I felt breathless as the world seemed to stop for a brief moment as my eyes met the beauty of hundreds of Monarchs that day. I felt embraced by their weightlessness and my soul lifted with each powerful movement of their wings. It was one of the most magical moments. One in which I think of often. 

This past weekend I was walking along that same storied row of trees and brush and happened upon the same phenomenon. I had missed the mass migration by a few days but there were still a dozen or more that stayed behind. Monarchs danced amidst a vibrant blue sky, not fighting against the prairie wind but instead allowing it to carry them higher. Their beautiful wings trusted to the air in which they couldn't see but could only merely feel. I still trust there's a bit of magic within those moments. That each Monarch must simply outstretch their wings and believe in the unseen. And that trust? It makes them soar. When they'd land I was taken aback by the way in which their wings would outstretch as if almost to an unheard rhythm. Lifting their wings to the heavens - their brilliance composing a chorus of hope that cannot be heard but only seen.

In a quick unfolding of events, on Wednesday morning I boarded a plane to New Haven, Connecticut. A few months ago in a spur of a moment decision I took a chance and sent an email inquiring about a study opportunity at Yale New Haven Health. I'm not sure what made me write that first email. No, wait. I do know. Hope, and a deep trust in which I cannot see but can feel within every breath. There are many unknowns to unfold in the following days, and ones in which I will share more about after next week. For now, I have gratefully spread my wings and am trusting that this opportunity will continue to unfold - rooted in a beauty that will forever leave me changed for the better - no matter where the path leads. 

More to come, dear friends. Great love to you all. 

34 : Living in the Wait

 

So much of life and beautiful time we waste by being distracted by the notion of waiting. We fail to realize that living and waiting are always present within each other. That waiting is not a suspension of time, but a fueling of hope. It’s often within the season of waiting we find the truest meaning of living. It’s within the waiting we find an unmatchable peace that can enliven our senses and inspire our spirit. It’s in the waiting that we have the opportunity to make every beautiful breath extraordinary. And if we are brave enough to look, it’s within that quieted season of waiting we find ourselves.

Thirty-Four

I realize that I’ve spent a great number of breaths over the last thirty-four years gripped in a perpetual season of waiting. Holding my breath and silently pleading with a life in which I was waiting to begin. Hoping that the circumstances of my truth would free me to not only live by hope but live within its realization. Waiting for answers to which I didn’t even know the questions, only a discontented restlessness within myself. For a long time, a restlessness that I thought could be drowned out by the chaos of the world around me as I felt time slipping through my fingers - desperate for hope to rescue me. I used the world’s chaos to distract me from living within the difficulty and unknowns of the present - projecting a contentment into an unguaranteed future. But as I look back upon the last thirty-four years of this gifted life, it’s in those lost moments of waiting that I can clearly see I found not only what it meant to truly live, but in fact, found myself. 

This birthday casts itself as a beacon of hope amidst such a seemingly shadowed season of waiting. For as long as I can remember I’d wish for more. More beautiful breaths, more years with those I love, and simply more time. While that wish will always be on my heart, it’s during this season of waiting that such a wish is overshadowed by a weight of gratitude. A gratitude born out of this quieted season of isolation. Have tears frequently stained my face over the last ten months? Does my heart deeply ache from missing my people? Yes, but this gratitude that consumes my heart today is born out of a stillness that can only be found from being alone amidst a season of waiting. It is a gratitude that silences the chaos and unearths what matters most - allowing that which truly fills me with life and gives meaning to every breath to illuminate a hope that perpetually fuels my life. A hope that frees me to live and love more deeply no matter the circumstance. 

Living within Hope

This season of waiting you feel you’re in right now? The one that you can’t wait to get out of? Put your hand on your chest. Close your eyes. Take a breath. You are filled with beautiful life. You're not being held back from living the life you want, but instead you're being encouraged to open your eyes to your life that is filled with authentic meaning no matter the circumstance. This season can be a gift in which you learn to live within the wait. Out of such a season we can learn that every breath not only can be but is extraordinary in its own way - a way in which challenges us to be truly present. Lastly, that restlessness you feel? It’s the hope that fuels your life and gives gratitude to every breath you’re given. 

It is my greatest hope that when I take my last breath that I will be able to look back on the entirety of my life and know that I was never lost within waiting. That instead my life was found lived within a hope veiled in an entire season of waiting which gave me the strength to dare to dream, to love, and embrace this life one beautifully gifted breath at a time. Love to you all.