Living with cancer and living well is the theme of this blog. Somewhere along the way I’ve gone from living well, to thinking I’m living well, to realizing I am living unwell. When did this happen? How exactly did I get here? It sucks. Can I get back to living well or is this it?
Quality of life (QOL) has been a phrase I’ve always hated. To me it means treatment is done and it’s an attempt at empathy to say the focus is now on comfort. I know QOL can show up from day one of treatment, however, some of my preconceptions are carved in stone. I am a fan of comfort, but also would like to stay on an effective treatment. Besides, I want both. It needn’t be one or the other.
Enhertu was a relentlessly vicious treatment without an ounce of comfort. Nausea followed me everywhere. Either I couldn’t eat when I wanted or wasn’t hungry. Weight dropped off effortlessly. Most of the time I felt a heavy, flattening fatigue. I slept a lot. Why not, it lessened the nausea a degree.
Here is a plug from my fictitious sponsor Ensure. Ensure is delicious, especially the vanilla. And it gives me some needed nutrition. It comes with an immunity boost, too. I love it!
Other lowlights include a two-month hiatus from taking a walk outside. I finally did my 2 mile loop. I was about ten minutes from home when I realized how hard it was and how much energy I was exerting. I need to build up my stamina. I’ve only done it once or twice since then.
A friend has visited me twice where our visits basically amounted to me lying on the couch like a lazy bulldog while she sat in a chair. I couldn’t even sit up.
Most days my makeup consists of eyebrows and eyeliner on days I want to spruce up. Makeup has always been rather minimal for me. Eyebrows make a huge difference. Lipstick isn’t needed because if I go anywhere, I wear a mask.
These scenarios are examples of my not living well with cancer.
At home I’m largely okay. It’s my safe haven. I can eat and rest when I need. Recently, I traveled to Florida. My plane ride was remarkably normal. Once I met up with friends, I found keeping up with them hard. I couldn’t always eat when I needed to but gradually began to do this to fit my body rather than the late hour. I had to say NO once or twice to activities. I still took my afternoon siestas when possible. The emotional toll of the trip and side effects were almost harder than the physical.
What to do now that I’m home?
I rest when I need to rest.
I nap without apology.
I eat what I can and what tastes good to me.
I cancel plans if too tired.
I know who supports me.
Now, I’m on yet another treatment. I hope it’s kinder to my body and more effective. I’d love to get back to living well.
Superstitious people avoid the number 13.
Floors in tall buildings skip from 12 to 14. People don’t like sitting in the 13th row on airplanes. Friday the 13th is considered an unlucky day. There were 13 people at The Last Supper and many still refuse to have 13 people gathered around a table. I ruled out a home while house hunting because the number 13 appeared in the address. My dad also died on a Friday the 13th. It could have been any day, it just happened to fall on that date. It’s weird that I’m able to rationalize the date he died on but can’t with a house address. Maybe I’m a little superstitious.
Hold on 13 seconds. Let’s take a closer look at the number.
America began with 13 colonies. There were 13 stars on the first flags. Those are not bad things. The number 13 is a beautiful prime number mathematically speaking.
Countries that have a strong western influence believe 13 to be unlucky (like the U.S.). Some countries believe 13 is a lucky number. Italy is one country that considers 13 highly lucky because it’s connected to St. Anthony, the patron saint of finding things. India also considers 13 to be lucky. Whatever you do on the 13th lunar day is meant to give you positive results.
There used to be 13 months on our calendar instead of 12. Back in Pagan times, this related to the 13 moon cycles we have every year. The moon is considered to have powerful feminine energy. It corresponds to menstrual cycles that last 29 days. Women cycle the way the moon does. The number 13 represents a continual cycle of rebirth and death. There is fertility and creation. The moon’s energy is the biggest correlation I found to exalting a woman’s spiritual energy and power.
So far none of this is bad or unlucky.
So how did 13 become unlucky?
Men of yore were the problem. Booooooo men of yore.
When Christianity became popular, civilization became ruled by the patriarchy. They made some big changes affecting women. The goddess Freya (goddess of love, her name closely associated with Friday) was labeled a witch. Ridiculous. Friday the 13th became known as the day when 12 witches met with the Devil. Absolute rubbish. Add that up and you get 13.
Buckle up beacause we’re going back even further to Biblical Times all the way to ancient Israel and the Old Testament. This is a time when women had more power and were revered. Women were active in community life except in the priesthood. Women freely engaged in commerce and real estate. Impressive. Specifically, Miriam (sister of Moses) led the women of Israel in worship. Deborah was a judge and a prophetess as well as a wife and mother. Highly impressive. Abigail is mentioned because she managed a political conflict between King David and her husband. Intelligent wives were considered gifts from God. Wow and wow.
My how times changes in the New Testament. Somewhere men seized the opportunity to suppress women. Women’s lives didn’t extend beyond the family. Women were largely illiterate. Men and women were not seen together. Women did not go out in public often and needed to be accompanied by an enslaved member of the household. Jesus seemed to the exception to this rule. He shared his teachings to anyone who would listen. There are stories of Mary and Martha, Mary Magdalene, and the woman at the well. Still, this was not the norm.
If I am wrong with any of this, enlighten me, please. Biblical study is not a strength.
It is believed that some women in the Middle Ages were scribes.
Men simply did not like women having power. Some still don’t. Look at the inequalities of representation in politics, women in other leadership positions, and in pay. Then there are the labels of being assertive versus being a bitch. Many girls are denied an education in certain countries.
Friday the 13th, or an ordinary 13th in the month, is a perfect day to reflect on who you are, your purpose, and your power. Focus on the powerful feminine within and let it flow out to the universe. Let that creativity and power shine.
There is one day allotted to metastatic breast cancer during October. That sucks. It’s October 13th. How I wish all the awareness would level up and address the urgency of research for MBC. If Metastatic Breast Cancer Day has to be on the 13th, it’s more than okay with me. I acknowledge that men get breast cancer and metastatic breast cancer, but here is my message to women. We women can embrace the power the number 13 holds and do our best to change the world.
There is a chance 13 may become a favorite number of mine. Incidentally, I just began my 13th drug. Lucky 13 it is!
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?
“We delight in the beauty of the butterfly but rarely admit the changes it has gone through to achieve that beauty.”Maya Angelou
Butterflies hold a magic that may only be felt by those lucky enough to spend a few fleeting moments with them. They are silent teachers.
They also are flying insects. So are flies, mosquitoes, and wasps. Ick. Unlike those insects, butterflies appeal to our sense of what is beautiful. They dance and float in the air. These delicate creatures visit us briefly and rarely let us get close before fluttering away. They have a purpose that goes beyond being beautiful. Butterflies are efficient pollinators of flowers and eat many weedy plants.
We associate butterflies with sunshine and flowers. They are an integral part of summer. Butterflies represent new beginnings and change. Their metamorphosis from caterpillar to butterfly is the reason why. I find them incredibly hopeful creatures, in part due to their transformation.
I feel warm and happy when I happen across one. They have always held a sense of fascination and awe for me. I happened across a book in my early years of teaching where the setting was an imagined world of wonder. A lone Whangdoodle ruled over this kingdom where he was still believed in. Golden rivers sang musical notes when flowing. Boats were fueled by laughter. Flowers smelled like freshly baked bread. And butterflies were over-sized and referred to as flutterbyes. Calling butterflies flutterbyes has stuck with me.
The monarch is by far my favorite butterfly. I always considered its impressive migration each fall to Mexico a major accomplishment. I assumed this incorrectly for years. The same butterfly that sets out is not the one that arrives. It’s likely the fourth generation that reaches the destination. That’s like our accomplishing something our great-grandparent started to give perspective. Each butterfly only lives 2 to 6 weeks. So short to represent a full life.
Another new fact for me is that butterflies can’t see their wings.
Caterpillars have never held the same awe for me that monarchs hold. Get this – I didn’t even know what a monarch caterpillar looked like. I incorrectly assumed they were the fuzzy wuzzies I typically see crawling along the ground. They in fact have black, yellow, and white alternating stripes.
A caterpillar transforms into a monarch and becomes entirely another creature. It only takes a week or a few days more for the butterfly to emerge from its chrysalis. Humans take up to 40 weeks. We need all those weeks and still are born unable to survive on our own.
We all have had transformations in our lives. Think of all the physical changes that happen to our bodies throughout life. Think of all the developmental changes. Education and life experiences transform how we think about topics. Travel changes a person. Any time we learn something new can bring about change. We change when we set off on own as adults. Careers have changed. We’ve packed up our belongings and set up life in a new area or state. Some of us married. Divorced. Gave birth to children. Lost children. Good events in life can transform us just as hardships, grief, and loss can.
All this brings me to cancer.
Metastatic cancer has brought innumerable transformations to my life. The initial stage IV diagnosis changed the trajectory of my life. Treatments that coursed through my body changed how I felt, how I looked on the outside, and changed the cells on the inside. Good and bad cells were killed. These treatments altered how I was seen and how I saw myself. I became an instant warrior. Or some simply viewed me as sick.
Cancer definitely changed how I saw myself. It’s tough to put into words because I’m pretty sure I’ve seen myself in countless ways. I’ve seen myself as both strong and sick, extraordinary and not even rising to meet common. I’ve grown through what I’ve gone through, as we all do. I would have grown in other ways if I did not have cancer.
Changes in my appearance have been dependent on treatment side effects. They wiped out my hair causing me to shine with my smooth bald head, fashionable wraps, and wigs. Morphing from one look to another was physically easy, emotionally trying. Steroids encouraged my appetite and a hefty weight gain at first. I lost it and looked incredible, you could say healthy. I felt a bit like a floating and dancing butterfly. My weight inched mostly upward with changes in treatment. I became one big butterfly.
My mom’s death from metastatic breast cancer brought too many changes. The person who had always been there was gone forever. I experienced firsthand how daily devastating transformations ate away at how she looked, her abilities, and her life. There were cruel changes daily, even moment to moment as she worsened in bed at the care facility where she spent her final days. How does a person watch that and not change from witnessing that process? It’s not like someone makes a heartfelt speech, closes their eyes, and you see their soul disconnect from their physical form and happily drift upward. Her transition was not beautiful. Then again, I don’t know what happened after her last breath.
Some of the transformations I’ve experienced can be clumped together. The loss of my job, qualifying for disability, being forced onto social security disability, and finally Medicare took a thriving, contributing member of society and turned her into someone who doesn’t bring in much in terms of disability income. My sense of worth has been chipped away at bit by bit.
The list of changes brought about from cancer goes on and on. There have been changes in relationships in both friendships and family. A treasured few are true flowers in my garden of life. Others have turned to dust and blown away in the wind.
Going through a metamorphosis from caterpillar to butterfly has its brighter side. I have emerged a new creature each time I’ve become a butterfly. I’ve experienced a rebirth. New friends have come into my life. Old interests have been given new life like writing and photography. I spend more time in nature.
Medically, I know a lot more about cancer than before cancer. I understand quite a bit of medical speak and ask lots of questions. I trust my team, and I am part of my team, and I won’t just go along as a blind patient. I see being informed about my health as a positive.
There is a proverb that is especially fitting to finish my thoughts.
~ Just when the caterpillar thought the world was over, it became a butterfly.
We humans will repeat this cycle, oscillating between caterpillar and butterfly until we emerge one final time as eternal butterflies.