I’ve been at this cancer thing for quite a while now. These are the objects that tie me to cancer and treatment without question.
My port tells the story of ease and comfort for treatments. It’s used to get blood draws for labs. Premeds and any injections take this route into my body. Chemotherapies, infusions, and whatever else my body needs go in through the port. Mine has been a companion for years and started to not work. A protein flap builds up over it and prevents a blood return. Fluids still go in but a blood return is needed for it to be labeled fully functional and meet criteria for being used for treatment. Alteplase is injected and left in for an hour to eat through the block and get a blood return. In the meantime, patients raise their arms, arch their backs, turn their heads, and contort in all sorts of uncomfortable and comical positions with hopes one of these positions will position the port into a position that allows for blood return.
Last winter, my port had finally had enough and leaked. It took a couple of months to conclude this, and then a couple of tries to get one that worked effectively. All works perfectly now and I am back to a story of ease and comfort. Some still prefer a line placed in the arm and removed after every visit. They have good veins. Perhaps treatments are spread far enough apart for them. Maybe they only have a 6 month course of treatment and know they will be done at some point in the future. Not me. I’m in it for the long haul and my port is in it with me.
The waiting room tells a story of waiting. It also tells a story of worry and anxiety. Schedules get thrown off and I wait a little longer. I look around at who else waits. Not many come alone. Most have a spouse or a support person. They all have their own stories and objects that help tell them. In the waiting room, we are all in the same place waiting to go somewhere slightly different. It’s like the gate area at an airport. Some may be boarding a plane of early diagnosis. Some just flew in for a yearly check and they’ll shortly return to the rest of their lives. Then there are the frequent flyers like me who come often. It doesn’t matter how often I come, the waiting is the same. To read more about the stories of waiting rooms, click here.
Office Visit Room:
Stories of the exam room are mixed. There’s more waiting in this room. With my first oncologist, there was more calm and predictability to visits. He addressed all my concerns, comforted me when needed, and always did an exam. He taught me tons. My current oncologist works in a larger setting – a center within a hospital – and there have been times I’ve felt like I’m on a treatment assembly line. She is an expert, dedicated, and friendly. I work a lot harder to be heard and get what I need, but I do it. Since I’ve been struggling lately, she has shown more empathy. I never know exactly what I’m going to get when I’m in the room for an office visit. It’s unpredictable. I never know for sure what I’m going to get as my office room. The room itself is sterile and pretty much like all the others, devoid of personality.
The powerful and hazardous liquid in those bags tells the story of treatment. It’s the reason I’m there. Cancer. I have prayed holding the bag before infusion started. I don’t do that anymore since the nurses dress up in protective gear to hang the bag and get it dripping. I’ve sent Reiki energy to the bag during treatment. I’ve felt depressed, angry, and out of my mind while there. I’ve felt empowered because something was being done to kill cancer cells.
The treatment room is another area of mixed feelings and different stories. It has been a story of smooth sailing in the past. I’ve enjoyed visiting with nurses. It has even been, dare I say, relaxing. It felt like a natural part of the landscape. I felt I belonged. When I switched treatment centers, the story was revised. It became a story of mild to moderate discomfort. I struggled to belong. The nurses were a bit short with me if they spoke at all. I counted the seconds until I could leave and return to a world where I was more comfortable and felt like a real person. This story has been revised again over time. It feels like home. The nurses know me and we have conversations. I receive comfort while I’m there. I take naps.
Due to scheduling, I’m usually the first one in the chair in the morning. I wonder who will be using the chair after me and what cancer story they would tell. Would they cold cap? The cooling machine is in the bottom left of the photo. How are they feeling?
The MRI and PET machines tells stories of regression, stability, or progression. I’ve been fortunate to have a few scans show regression. Results now tend to be more often progression. Scans also tell the stories of claustrophobia and scanxiety. I realized during my last MRI that the claustrophobia has all but disappeared. It’s about time after nine years. You get used to things after so many years. The scanxiety was almost gone, too. Results from the MRI were already read and released by the time I got home. I prefer it this way so I have time for feelings and plan my questions. I may be upset with the results, but I don’t have to wait for them. It takes a lot off my mind.
Objects have stories. I can look around my house and am able to retell the stories of buying certain pieces of furniture, why a few decorative items are important to me, and recall stories of a few professional objects that remain. As a storyteller, I love collecting and sharing stories. Okay, not as much the cancer stories, but they need telling too.
Imagine that you were a young woman living some three hundred years ago in France. You had your whole life in front of you when you learned you had to marry a widower with children for the good of the community. You didn’t know this man, nor did you want to marry him. You prayed fervently to the favored gods who answered in the daylight, but you never got a response. All you wanted was more time. Time to discover life. Time to fall in love. Time to explore. The night of the wedding arrives, and you run away into the woods to escape. The dark of night and the trees conceal you.
It’s there that you pray to the gods who answer after dark.
The devil appears and makes a deal with you. Your soul for as much time as you want until you are tired of living. Then he gets your soul.
Addie accepts the deal.
This is the plot of The Invisible Life of Addie LaRue by V. E. Schwab.
Addie discovers she has plenty of time. Time isn’t her problem. People remember her only for the present moment. If she pays for something and the seller turns his back, she is a stranger and accused of stealing. Portraits can’t be painted of her; photos show a blurred face. No one can know her; no one can love her. One night stands are the best she can have because her gentlemen friends have no idea who she is when they wake up next to her in the morning.
Addie is unable to leave a lasting legacy and she cannot have her image captured.
Interesting concept for a book. I found it original and philosophically engaging. The ending surprised me. I confess I didn’t care for the ending. In my opinion, Addie’s confidence in herself is flawed. The devil character is also flawed, but these flaws are necessary for the book to end where and how the author intended.
In real life, we all want to leave some positive mark in the world, just like Addie. Each of us needs to know our life mattered.
This is especially true for those of us living with metastatic breast cancer.
A personal legacy is more than money or property passed on to others. How a person is remembered is also based on their words, actions, and how they lived while alive. I want to be remembered as someone who was kind and giving, who enjoyed life and tried to both live fully and do some good. Hopefully, I’ll be thought of favorably. I’ve said before that I try to lead by example. May those examples be positive. I’d love for hearts to smile when a memory passes their way or something I have left behind is used.
What else is my personal legacy?
Over two decades of my official life as a teacher is how I believe I’ve made the biggest difference. A lot of children passed through my life and were a true gift to me in countless ways. Some parents have let me know that I’m the one who excited their child about writing or books. Others have let me know I really took the time to get to know and understand their child. I hope I imparted a love for learning, asking questions, and to think carefully to solve a problem. Every morning my class would hear me greet them, “Good morning my most wonderful students.” I would nickname every class the class of awesomeness. I personally emphasized kindness as part of the unofficial curriculum because our world needs more empathy.
Those are the things I hope I’ve done through teaching.
I’ve lived with cancer tried to do it with grace and strength and now with more authenticity. I have not just sat down waiting for the worst. At times, I haven’t accepted everything that accompanies cancer. I’ve tried to teach here, too. People see how I’m living. Sometimes they see it’s hard. There are also those who see what they want to see.
Fundraising for more research at UW Carbone was a big accomplishment for me. It was an accomplishment for cancer research, too. A lot of people helped make it happen. Awareness was raised that was connected to action. I take pride in what I did. I am honored that I pulled some new people into the fold so they could learn and become part of something bigger.
Of course, there will be monetary, property, and other assets left behind. My plan is for there to be enough money to continue the small scholarship I give to a graduating high school senior who plans to major in education for many years. There are a few other charitable contributions planned, along with meaningful keepsake items that I consider legacy worthy.
My writing is another part of my legacy. I’ve printed out each post so there is a hard copy. I hope they are preserved. It’s an impressive stack if I must say so. Other than the writing itself are the ideas I’ve written. Some have been very cancer driven pieces where I’ve written about my life with cancer. I’ve written about cancer issues I’ve experienced and how my perceptions have evolved. In a lot of my posts, I’ve worn my feelings on my sleeve.
Intangible things are also part of my legacy. We can never really know the effect we have on others. Our attitudes and outlook on life has invisible ripples to others.
And then there are the times I’ve felt invisible like Addie LaRue. Times when I’ve felt not seen or heard. Moments where I feel forgotten. I often feel inconsequential. How can I possibly contribute to society? I’m sick, right? The losses I’ve experienced take away my visibility (career, friendships, health, failed treatments, loss of mobility, loss of favorite activities). Each loss adds a layer of invisibility.
But I am not Addie LaRue.
I am Kristie Konsoer.
I have made contributions to society. I have good family and friends and enjoy time with them. I am not invisible. I am seen.
Vulnerability is scary. It exposes emotions and opens up our souls to possible hurt and rejection. Hurt and rejection sting.
What then, is the point of being vulnerable?
It can lead to comfort and acceptance. Other people have felt what I feel. Others have thought maybe it was just them until I shared. Or vice versa. It involves trust, empathy, and meaningful connections to others.
A lot of vulnerability comes with a cancer diagnosis. There are many exposed emotions such as worry, fear, sadness, anger, stress, anxiety, and guilt. Layer these with physical symptoms like nausea, diarrhea, constipation, headache, fatigue, bone and muscle pain, and other side effects. Combine these altogether and you get the instability and loss of control that make vulnerability what it is.
No one wants to wake up in the morning and strive to make themselves as vulnerable as possible in every situation throughout the day. Most of our day to day activities fall within our comfort zones. People tend to thrive and feel happy when they feel safe and secure. This holds true to learning, performance in the workplace, and personal relationships.
Yet it’s in those personal relationships where we need to let others in. Not everyone, but those few who offer that trust, empathy, and connection that lovingly support the vulnerable. It’s a two-way street and we can let those in who are vulnerable with us.
What does Brené Brown have to say about vulnerability?
“We can exercise the vulnerability muscle that allows us to soften and stay open rather than attack and defend. This means getting comfortable with vulnerability.”Brené Brown
“The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it is our most accurate measure of courage.”Brené Brown
How can this be applied to my life? I have five main take-aways:
One of my friends says to lean in. She and others are there to support me. They will sit with me in my pain as I will with theirs. I have had more than enough time to get vulnerable with cancer, although I can’t say I will ever be comfortable with it. I can discuss it somewhat more openly and know what my feelings mean.
Leaning in requires openness and a degree of courage. The outcome of doing so is usually unknown. Life has no guarantees. Unfortunately, some may not receive the authenticity and vulnerability we offer when we lean in. We try again, perhaps a little more carefully, but still courageously.
Illness makes us vulnerable.
Illness unleashes the uncertainty, risk, and emotional exposure that are at the heart of vulnerability. There have been so many ups and downs with metastatic breast cancer. Countless face offs with fear. Innumerable times of sadness, loneliness, and disappointment.
I have turned from a confident woman into someone much more insecure. There is hesitancy in attending social events because of anxiety about looking like a sick person. Sometimes I don’t even want to walk out to my mailbox and be seen. Walls are so much easier to leave up in contrast to feeling exposed.
When I don’t feel well, my defenses are down. Hurt, self-protection, and privacy are why I have defenses. Defenses like lying to questions about how I’m doing. Defenses like withdrawing from others so I don’t have to talk about cancer and me. Defenses like curling up in my safe haven at home.
What I call the Fatigue Factor impacts my vulnerability. Some days when fatigue prevents me from even smiling because I have no energy. Fatigue, any side effect from treatment, makes me vulnerable, but I don’t think in a good way. I can’t do much to reject unwanted gestures, nor could I accept wanted ones.
I need to trust more.
Cancer has caused distrust of my body, myself, others, and medicine.
I am not alone.
Yet, my body is holding on. Trusting myself is a work in process. There are people in my life whom I can trust. I can think through information and my emotions in an analytical way. I gain insight when I write about my feelings, often ending up in a different place than I thought I’d be. Talking through things is incredibly helpful. I was feeling particularly low one day and messaged a friend. We chatted. When I spoke the words I was feeling aloud, I realized I was over reacting. What I worried about was in fact a very small deal. Another day, I stopped at a friend’s house for an outdoor visit and had a breakthrough on why I didn’t feel more anger about no longer teaching. Gratitude is my over-powering feeling about no longer teaching, a little sadness, but not really anger. It’s certainly in my best interest to trust medicine that has stood up to scientific tests and rigor.
I joined a support group when initially diagnosed. It was not a group for stage IV breast cancer. The director at Gilda’s Club told me they were a group of little old ladies that ran around everywhere together. I was 41 years young. Age doesn’t define friendship, but I didn’t think I’d fit. The group met during the day and I was still teaching. I joined a general breast cancer support group and didn’t share I was metastatic. I didn’t feel I clicked with this group either. Women monopolized the time with issues that didn’t seem relevant. Eventually, I stopped going.
I am part of a healing circle now that meets on Zoom. Our small group of six all have metastatic breast cancer. Here are women who have become friends. We have a bond and connection that is tight because we have been vulnerable with one another. What we share with one another has been one my biggest teachers that I am not alone.
I can be vulnerable and still hold boundaries.
Being vulnerable does not mean all boundaries are tossed out the window. Everything isn’t to be shared with everyone. Everything isn’t even to be share with a select few. I have realized that opening myself up more has allowed myself to be stepped upon with an understanding that it is okay because of what the other person needs. Old wounds.
No is a great word to hold boundaries. I don’t need to explain.
Another boundary that rests with me is the decision on what gets shared and with whom.
I can put limits on how vulnerable I make myself. If something is too painful for me to speak aloud, that is okay.
Boundaries make being open with uncertainty safer.
There is space in vulnerability for many feelings.
Let’s look back at the definition of vulnerability: uncertainty, risk, and emotional exposure. Space can be held for whatever the softness opens us up to experience. We can feel grief, growth, hope, and even happiness. I feel them all.
I am willing to show up and be seen.
Who’s with me?
I’m a little wren
Nesting in the pine
And singing to be heard
Loudly and sure
Because I have a song to share.
I’m a white rose
Opening in the garden
With petals etched in pink
At the edges
Because my time is now.
I’m a cloud
Floating across the sky
And ever changing
Shape and form
Because that’s what clouds do.
I’m a book
Scrawling with thousands of words
Filled with originality
One you can’t put down
Because it is unexpected.
Yearning to be seen
Screaming to be heard
Ignored by so many
Because I am incurable.
I’m a candle
Lighting the dark
And giving hope
Wherever it’s needed
Because candles illuminate life.
I’m a butterfly
Fluttering in the breeze
Lighting on flower
Because I make the world beautiful.
I’m a song
Humming my melody
With a driving rhythm
And I listen to the spaces between the notes
Because they are important to the song.
I’m the sky
Seeing everything below
No matter how I look
Sun or rain, day or night
Because I am always there.
I’m a bee
Working to keep the
Entire world from collapse
With little thanks or understanding
Because I sometimes sting.
I’m a unicorn
Staying as safe as I can
And as real as can be
While I travel with others like me
Because unicorns do exist.
I am a human
Wishing to morph
Into someone without cancer
Because I want to be healthy again.
These are the things I am
As I morph from one to another
But I also feel like a puddle of tears
Or a bundle of nerves
As demon cancer cells
Multiply inside a body trying to stay alive.
How am I feeling?
I feel misunderstood
And sometimes voiceless
Silenced by a need to conceal
And wear a disguise of a smile.
Look into my eyes.
My eyes don’t lie.
Eyes are windows
Into our souls.
My soul either is a light
Or it is an empty hole of longing.
I want us all to be lights.
What do you see?
A couple moved in next door to my mom’s house years after my dad died. They were older and wanted a ranch home to live in as they aged. Carolyn had mobility issues. Dave helped her transform a fairly barren backyard into beautiful areas of raised flower beds. Dave would occasionally snow blow part of my mom’s sidewalk. They looked out for her and were kind people. It’s great when neighbors can look out for each other. My city is known as the Good Neighbor City. Most of the time we wear it well.
The years go by as they do. Carolyn became confined to a wheelchair. Dave grew older and showed signs of decline here and there. My sister and her partner started looking out for them. Now they would help with the snow as Dave had once done for my mom. Good neighbor spirit at its best.
The ambulance showed up next door on a Saturday night a couple of weeks ago. After a bit of a wait, a stretcher with Dave wearing an oxygen mask was brought out. He was loaded up and the ambulance took off. Carolyn was brought out, helped into a car, and it followed after the ambulance.
By the next day, cars were parked on the street outside their home. Cars usually show up at a house after someone has died with family gathering together and showing support. My sister walked over to find out what happened and to offer her help. Dave had died.
He choked on a piece of orange.
I’m still gutted. One moment a person is eating an orange on an ordinary day. The next moment it’s lodged in his throat. He can’t breathe. He can’t communicate. His wife can’t get to him and be of help. She watched in terror which is equally as gutting. He had been without oxygen too long and there was no brain activity. The decision was made to let him go and remove him from life support.
How sudden, unfair, and without reason.
Why? It’s another unanswerable question I’ve asked myself. Maybe it was his time. Maybe this avoided a long illness on the way or a devastating accident. Maybe these are things we just tell ourselves.
Dave’s death got me thinking about life and death. People often wonder if a quick death is better or a long one. My father died quickly of an aortic aneurysm after a second heart surgery. All sorts of medical issues were identified during that surgery. He had more surgery and a long road ahead of him. My family hadn’t faced a lot of death in the family. We were naïve and thought he’d get better. He thought this, too. It wasn’t meant to be. We were shocked not to have a goodbye.
My mom survived a little longer than a year after her metastatic breast cancer diagnosis. She languished more and more in an assisted living facility for her final couple of months. More of her was lost each day. She didn’t have any wise comments about death or the afterlife. Talking about these things didn’t ease her. I remember she gave me quite the sideways glance when I once mentioned she’d see Dad again. Her mother (who had passed) came to her a couple of times to visit. She told me about that when I would drive across town to visit her after school and spend dinner with her. I wanted to know what she had to say but my mom couldn’t piece the conversation together. Another time she told me Grandma had left without saying goodbye and my mom was very distraught. All I had was comfort and love to give her. I would just sit and feed spoonfuls of soft food to her or watch her sleep until my sister would join me when she finished work.
Is a long goodbye or short goodbye better? Perhaps no goodbye at all?
We get what we get.
I believe we get what we are supposed to get.
If you are a regular reader, you know I have metastatic breast cancer. I am lucky to be here.
I would absolutely die if I died choking on a piece of fruit.
Forgive the dark humor.
Change is hard for me. None of us know when we’ll breathe our last. Some of us have a better idea than others what might cause our eventual demise. I’ve been able to think about what is important to me. I focus on meaning. I stage photographs a certain way so they can hopefully capture a moment or my spirit. I believe gifts should have meaning but I’m more into experiences. I have more than enough things. And oh, is time precious. Goodbyes are hard for me, too. I still want to have them.
But not now.
Living with metastatic disease involves living as fully as possible in the moment. I do a deep dive into connection with others. I relish times of calm and laughter. My values are more aligned with my words and actions. Living fully is where I place my attention and intentions. I think many feel the same.
There was a parent of a former student I taught who died two days after she was diagnosed with metastatic breast cancer. No prior symptoms. She thought she had the flu. There was no time to process the shock let alone time for her family to say goodbye. This happened some years before I was diagnosed. It was unimaginable then and still is now.
Another death that was sudden, unfair, and without reason.
Maybe we don’t get what we’re supposed to get. No one should get only two days. The shock is still present. I’ve seen her children as adults. They turned out to be great young women. Great young women who lost their mother far too soon.
Why have I been blessed with nine years post diagnosis when she got two days? The survivor guilt weighs on me like a boulder crushing my chest. I work to free myself from it, to talk about it, to grieve when I can since I can’t do anything about preventing the loss anyway. It is out of all our hands.
Life is short.
Life is fragile.
Rest in peace, Dave.