Category: Uncategorized

Words are society’s most powerful way of framing the issues of our time.  For thousands of years, philosophers have discussed how language affects perception.  The words we use, shape our filter around an issue; yet, in the age of people first language and politically correct speech, there remain many blind spots where we continue to utilize labels that feed into outdated and inaccurate perceptions. Living in an era of medical and technological breakthrough, we must often embrace new labels in order for our thoughts to grow and change with the times.

Individuals living with cancer are one of the groups that have been held back by old labels.  Currently, it is acceptable to call anyone impacted by cancer a “cancer patient”, or “cancer survivor.”  Why have these labels been allowed to identify 500,000 individuals living with cancer in America? We do not label someone with diabetes a “diabetes patient.”  People first language teaches us that a person is more important than a disability/disease. So why do we continue to allow cancer to be more important than the individuals it effects and use our speech to determine that a disease can define a person’s identity?  

To gather perspective on these labels let us look at their origins.  From the 1940’s until the 1980’s there were very few, if any, effective treatments for those with a cancer diagnosis.  The term ‘cacner patient’ was an accurate descriptive in that time. There were few cancer survivors. A person with a cancer diagnosis was without choice except to submit oneself to the guidance of a doctor.  Little to no information was available and therefore anyone with a diagnosis of cancer could be correctly labeled a “cancer patient” because many of these patients would not experience life after cancer. In the 1980’s, with the rise of technology, came effective imaging and screening for cancer.  For the first time, the death rate of cancer patients began to decline and a scientist spoke for the first time of “cancer survivors.”  The new term caught on because there was a new hope for cancer patients, the hope of survival.

Neither of these terms accurately describe a person impacted by cancer today.  By definition ‘patient’ is an individual who submits his/herself or is acted upon by a physician. Though this may have been accurate 20 years ago, it no longer is an accurate description of cancer treatment.  Presently, within hours or days of receiving the news of a diagnosis of cancer, one is given treatment choices and are urged to make significant treatment decisions, immediately.  I have personally known multiple individuals who were given the choice of which treatment to receive first: chemo or surgery. The implications of such a decision are significant, yet as a newly diagnosed patient, such a choice is often decided by when it would be convenient to be sick for 3-6 months.  In the moments after diagnosis, most of us have no idea what type of questions to ask to help make such choices, and usually, no one is there to help guide us. Furthermore, studies show that for the newly diagnosed, the fear that fills the mind minimizes decision-making skills and limits one’s ability to process information around such stressful decisions.  

But this is just a one example of how those impacted by cancer design their own treatment choices.  Once an individual is diagnosed with cancer and moves beyond the initial shock, s/he will soon learn of a plethora of treatment paths available. By talking with other individuals impacted by cancer or researching treatment plans from physicians around the world, an individual impacted by cancer can soon become empowered with a variety of treatment paths available today.  Cancer treatment is a dynamic process, a two-way discussion, and there is no expectation of quiet submission.  

Next, let us look at the term ‘cancer survivor’ and it’s implications for a person impacted by cancer today.  Until a cure/vaccine is the typical treatment for every individual impacted by cancer, there is a large population of people who question the label ‘cancer survivor.’  Today, many cancer treatments simply postpone cancer’s impact on lives.  In some situations, treatments themselves may kill the current threat of cancer in a body but will, in fact, create cancer over the following 10-15 years.  Other treatments may simply push cancer back, to a level where it can no longer be detected, only to be found at a later date.  Today’s label of ‘cancer survivor’ is misleading and inaccurate.  Those impacted by cancer long for the day when every individual who receives a cancer treatment will be called a ‘true survivor,’ not simply living for a 5-year benchmark but living long and full lives without fear of cancer’s return.

We are living in an era different than those that created the labels of ‘cancer patient’ and ‘cancer survivor.’  Today there is a whisper of a cure. Every individual impacted by cancer sits on the edge of their seat thinking, “The next big breakthrough could save my life, and so I will combine knowledge and wisdom and push myself so that I may be standing when that breakthrough comes for me.”  It is a new era for the community impacted by cancer and it is time for a new identifying term.

In this age of breakthrough, much attention is placed on fundraising and on the large research entities’ race to glory.  In the excitement, though, we have forgotten that for every medical breakthrough during these last twenty years, there have been thousands of engaged patients who chose to participate in clinical trials, risking their lives for a cure.  In this breakthrough era, those affected by cancer continue to die from treatments. In fact, they must. Someone must provide the data. Someone must be resolute enough to present his/herself to try what has not been tried before. Physicians and researchers cannot change treatment norms without participants in their studies.  Individuals affected by cancer must risk his/her life every day in pursuit of a breakthrough, in pursuit of a cure.

Yet when and where have we ever celebrated their courage?  On a t-shirt? On a hat? With a color? As a young adult living with stage four breast cancer, I must say I have never felt more alone than in the month of October when stores turn suddenly pink.  There is no celebration of me. There is no mention of individuals impacted by cancer. There is no face attached to the sales. There is only one marketing ploy after another that feels completely disconnected from the people it says ‘pink’ represents.  

So how, as a society, do we recognize the courage and sacrifice of hundreds of thousands of individuals living among us with cancer? While they wait for a cure, those impacted by cancer offer up their lives in pursuit of a medical breakthrough. It is their strength that overcomes the odds to reveal what is possible. Those impacted by cancer are the driving force of medical change. They are the breakthrough. So instead of labeling them as ‘patient’ or ‘survivor’, it is time to acknowledge their place in finding the solution to cancer. Progress cannot occur without them.

I am not an unengaged patient. I am reading the research. I am designing my own treatment plan. I am changing the statistics. I am living longer. I am not yet a ‘true survivor,’ but I am a partner in breakthrough.  

 

This is the anniversary of my cancer diagnosis, my second cancerversary.  In honor of this moment, I want to serve others by taking time to reflect on where I am emotionally and physically, and what I have learned this year.  I hope my reflection is relevant to those who are learning to embrace survivorship and helps those newly diagnosed to not feel alone.  I hope these thoughts will help us face what is ahead, with greater strength.  

I spent this year learning to function within my new limitations.  The things I have not done since chemo, well those pathways in my mind are gone. Even if I did them 1000 times before cancer.  So whenever I meet someone new,  try to solve a problem, or remember a book a once read, I am stopped.  Words evaporate and my brain is blank.  The archives of my mind run like a slow computer.   

I spent this year adjusting to scars.  I am covered with scars. Scars that itch, and then bleed when I scratch.  Scars that span from one side of me to the other.  Scars that send shocks of pain, while retaining no other sensation.

I spent this year learning to limit the stress in my life. 

I spent this year learning to manage my emotions.  I cry under any pressure at all.

I spent this year learning how to empathize.  I feel other’s suffering.  Especially others with cancer. I hear of a mom with breast cancer and I am brought to tears, though I have never met her.  I don’t want anyone to walk this road.

I spent this year wondering who I should be.  I, like most every survivor I have ever spoken to, struggle with the idea that now that there is hair on my head, I should feel normal.  I don’t. I have only begun to heal.  My life is raw.  Like the skin on my body, I seem to be paper thin. Too thin to withstand the abrasions life brings my way.  

I spent this year with a cancer filter.  Every new pain in my body creates a flashing alarm in my mind, alerting me to the fact that perhaps there is new cancer growing.  Every mistake I make, sets off a chain reaction of fear that the chemo damage will never heal, I will never recover.  Walking into a doctor’s office is an ominous experience.  The smell of the building, the view of the magazines on the table, or the taste of the water fountain creates a blaring warning that something bad is coming or may be already present.  These alarms do not resonate like polite cricket-like clocks but rather blare deafening alerts that I must manually reset within me before I am able to respond to the receptionist or answer a doctor’s question.  I spent the year training my body and mind not sink into that type of fear. 

This is where I am, an honest look at me and my my struggles.  Though I cannot escape these experiences, I have set my heart on something different. Walking in this season has created a heightened sense of life and many transcendent moments, because of the presence of fear.

I would argue that there are two types of fear, good fear and bad.  Secondly, the best way to fight bad fear is to replace it with the good.

As I minimize my natural fear, the kind that sets off alarms in my mind and stops me from moving forward in life, I am able to make space for good fears which come from taking risks, walking in hope, and stepping out in faith. 

Let’s take a look at good fear.  We remember with great detail, a first date.  Why do we remember it so well?  Fear.  We are scared of rejection, scared of making mistakes, scared our breath smells bad, just plain scared.  Yet when all is said and done, fear makes the moment better. It gives us awareness of every detail. It locks moments into our memories with accuracy.  It heightens our emotions. In essence, fear provides the capacity for us to feel emotion in a big way.  In the right time, fear is a gift.

This same kind of good fear exists in sports, roller coasters, and adventures of every kind.  We pay a lot of money to experience fear.  We go to a scary movie, ride a roller coaster, climb up the side of a mountain, and paddle down a river because fear for a moment is exhilarating.  

Fear, makes us feel alive.  It drives out every other thought, focusing the mind, bringing joy and a sense of accomplishment.  We love this type of fear and so we go in search of another ride, another river, another moment to hold onto.  

Unfortunately, these experiences are fleeting.  We cannot truly achieve lasting peace or joy through back-to-back moments that expose us to good fear.  Eventually the ride won’t feel scary and the river will be tame.  

In our day to day life, we can experience fear by embracing risk.  Risk means embracing something that has no guarantees and looking at the situation through a filter of hope.  

When we head out on the adventure, with no guarantees of what we will find, risk is there.  Therefore, on our adventure every experience is heightened.  Every memory locked in for a lifetime.  

Why do we leave our house if there is risk? Because of hope.  

Hope is needed when taking risks. We set our minds above the problems that could arise.  We hope for a beautiful day, despite the forecast, as we set out on a hike into the wilderness. We put our mind, our thoughts, and our faith in what is not readily evident. We embrace hope and put that hope into action through faith.  

Unlike fear, these emotions are a choice. Unlike fear, the heightened sense of life that comes from hope and faith lasts for more than a fleeting instant.  As long as we can hold onto our hope, clarity and peace remain.  

Life with cancer does not on its own provide a fear that is good but it does create ample opportunity for hope and faith to thrive.  In fact, in many ways, a diagnosis of cancer leaves a person with two choices.  To live in involuntary fear, or to choose hope and the act of walking out that hope through faith.  

This year I learned to hope in the strength of my body, in cures, in the kindness of people.  I placed hope in love’s ability to rise above.  I placed hope in my ability to release all that I was and find something new, perhaps something better.  I hope for these things. I have not found them and so I choose to walk toward them everyday in faith.  This risk, this faith, has raised my eyes above all that I currently am.  It has given me sense of calm in the the storm.  This hope has heightened my awareness of life.  Like the experience of fear, living in a state of hopefulness and faith creates abundance in the mundane.  

My year of hope has also gifted me an opportunity for clarity. Clarity is a common experience among cancer survivors, though we may not readily call it ‘clarity’. Many of us have a sudden awareness of priorities, and how our lives align or don’t align with those priorities.  We actually experience joy when partnering with what we find valuable. Conversely we carry an increased burden in the tasks that pull us from those things. We live with a sense of urgency. Do not waste the moment. 

I would argue, this common experience is the result of hope in our lives.  We are walking riskily, investing our hopes in things that we find valuable but cannot guarantee. We are experiencing faith, by choosing to adjust our lives to our hopes; by moving closer to our ideals everyday.

Cancer gives us the ability to experience life like never before. Though it may not be the roller coaster ride we would have chosen, we are in fact on the ride of our lives.   Though I see myself grow tired and emotionally weak, it is what I cannot see that keeps me strong.  My eyes are set on all that I can imagine and hope for and I intend to keep walking in faith until these too are seen.  

The best stories contain both impeccable moments as well as moments of complete disaster. First there must be a hook, something that draws you in and makes you want to stick around to see what is to come. Then the disaster hits only for redemption to rise up in a glorious finale. This is the kind of story I have been given. We love to love a love story, particularly the beginning and the end. The initial excitement that draws two people together is intoxicating. Then life flits by until we see the amazing beauty of an elderly couple holding onto one another while letting life itself slip away. 

Those are the bookends of the best love stories, but what occurs between the bookends is more significant. Love cannot be proven authentic until it fills years that turn into decades. 

I am blessed and honored by a love that if written, would capture the heart of all who see it. 

First, the hook: two adults, in their young twenties, from opposite ends of rural America. One day, the girl is stopped in her tracks by love at first sight. Like every great couple, despite the power of the initial moment, there is struggle. A realignment must occur and at one point the couple isn’t sure whether or not such a significant alignment could or should occur. In a flurry of emotion, one day they push through the past and are in an instant bound together with a singular purpose. 

As soon as they are married, the wife is injured in a car wreck that nearly takes her life. The couple must rise through the fear and trauma to heal and bond and learn that love and marriage is more than simple choices. 

They travel the world simply for the purpose of coming home smarter and well fed. They leave family and friends for the sake of adventure, more than once. They create three beauties as reminders that action is an integral part of loving. They see dreams come true. They endured severe sickness. They see the best in each other and become better because of how they are seen. 

They serve one another to the point of exhaustion. They see the wonders of the Earth. They live in trust, peace, and love. And no matter what has occurred in the day, they hold one another in the night.

This is what happens between the bookends of a love story. These moments hold the substance. A beginning and end are meaningless without hundreds of thousands of choices in between. 

A relationship with God is structured the same way, your final day is not as significant as everyday before. In relationship with God, the treasure of life is not found in the bookends but in the unraveling story that is formed. Each day, each moment, can be filled to overflowing with the love and provision of God, despite circumstances of heartache and struggle. This is the key to truly amazing love. 

Thank you, My Love, the gift of my life. I am eternally grateful for all that you are to me. Happy Valentine’s, dear. 

I am not the first person to cry out in the darkness. To not see an enemy, but yet be overwhelmed by the desire for one who will remember me. 

I do not remember myself, and cannot resolve the issues inside. 

When I try to recall, I cannot identify what is missing, I simply do not recognize my reflection. 

I was a wife, mother, teacher, friend but weren’t there other pieces? And these pieces, weren’t they good? Didn’t I love and live above reproach? I simply can’t recall. 

It is interesting that the body isn’t simply made up of pieces that can be removed and returned. It is also a whole. Any part removed, for any amount of time, leaves an ache, a need. The whole must be redefined in its absence, for there is no whole without each and every piece. And is it the same with life?

I have felt the whole of who I am, or who I will be. I have seen shadows of it in dreams and whispers of it in song. Still, I must wait for the pieces to be revealed. In order to experience this “who I will be,” old versions of myself must be washed away. 

Washed, such a passive word: scrubbed, scoured, and scraped away is more accurate. 

If we must use the word “washed” then this washing is the kind that occurs when the tide has pulled you under. Tumbling with the sand and shell, washing, the water taking hold and not letting go. Washing by thrashing, until your mind finds itself incapable of escape. It is by this means that I have been washed. 

Grasping for air, listening for the light, hoping for freedom, desperate to be released. For there is nothing in turmoil but to hope. So I hope that when I break through the wall of washing water I may rise to find myself full of life giving breath. 

This hope lifts my eyes. My strength reaches upward. Hope yearns toward the breakthrough. 

Then the moment comes. It happens, the turmoil subsides and, rising, I find my feet, firm and ready. 

Finding their path they move away from the abrading wash. Walking quickens because the old burdens were pulled away in receding water. Who I was, has fallen behind. To turn back or search for it in the depths, is not a choice. 

Hope raised me from the water. Now, on dry land, hope stirs my eyes to search for a new path, a new piece and renewal inside this freedom. 

As I consider my birthday, another year behind me another year before me, I think about the unpredictability of life. This coming year, I am not sure of who I should be or what I should expect. Cancer survivors say it is a common mental struggle that gets better as time ticks forward. But here I sit, today, and I realize my doctors have never declared me “cancer free” or even stated that I am in remission. There is no clear line to distinguish that yesterday I was fighting, today I have overcome. My conversations with doctors leave me feeling that cancer is inside of me hiding, silently waiting. So a sense of insecurity hangs over me. 
When I stop and consider life, this sense of insecurity should not come as a surprise. In college a friend died of an aneurysm. Another childhood friend was told from birth that he would not live past 18, yet lives productively into his 30’s. Another friend died in his 20’s in a car crash, only to find his body had unknowingly been eaten by cancer. On and on I could reflect on unexpected tragedies and physical triumphs that I have witnessed. Experience shows me that our bodies are not reliable, the medical community is still learning, and without any security in our future, we all move forward. Some people move forward because they have faith in a doctor saying “you are cancer free.” Some people place their hopes in diet and exercise. 

The only response that makes sense to me is placing my faith in my God. Since I was a child, I accepted that only my God knew the path of my life. It was for me to understand one step at a time. It was His job to reveal and create the foothold that would carry me forward. Truly, forward motion is the goal. I have never wrestled with the “why”. My heart remains steadfast on the job that is mine: to step forward on the path that is revealed. 

This year taught me that pain is a great motivator. Difficult times push you to reach out to family, neighbors and even society. Pain creates a platform of interconnectedness. As I reached out in need, I was able to observe the web of love that had been built throughout my life. A web that seemed invisible in certain moments of life, but as tears dripped onto the web, it began to glisten and the most beautiful accomplishment of my life was revealed. 

Once observed, this web of love has become motivating. No matter where my path turns or climbs, whether my journey lasts five years or forty, it is this web of love that hangs before me, glistening in the light of my life. I want to see its strands grow and reach to the farthest corners of my view, including as many others in my interconnected masterpiece. 

No matter what I choose to do in the coming year, how I spend my time, or where I invest my talents, all that will truly matter is how well I have loved. This revelation, learned through pain, will carry me forward.