The Invisible Life of Addie LaRue

Plot Summary

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.

Legacies

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.

Invisibility

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.

5 Lessons About Vulnerability and Cancer

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:

Lean in.

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?

Morphing

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.

I’m invisible

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

After 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

With cancer

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

Firing uncontrollably

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 Piece of Fruit

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.

Cancer Olympics

The 2020 Summer Olympics finally have arrived a year late in 2021. Tokyo, Japan is the backdrop to host the best of the best in competition. The Tokyo Olympics will be the biggest ever consisting of 339 events and 41 different sports. The four new sports added this year are skateboarding, surfing, karate, and sport climbing.

My sister and I shared a mostly unused skateboard growing up. Our driveway was level but too steep for our blood. I’ve never surfed. I took karate for about a year to feel more confident living abroad. I had no idea what sport climbing entailed. It looks like rock wall climbing, where speed, bouldering, and lead are scored.

Bouldering is a fun word.

What did you do today? I bouldered. I went bouldering. Fun, right?

I posed the question to my sister about which Olympic sport she would do if she were competing. She chose shotput because all you had to do was turn around and throw a weight as far as you could. I chose to compete in a horse equestrian competition. I don’t know how to ride a horse, but it seemed like the physical work rested with the horse and any finesse and skill rested with the rider. Of course, there is much more involved with both sports. Neither of us is overly athletic. I am at best a beginner in the many active things I try.

I’ve enjoyed tennis throughout life. If I get to imagine my expertise in an Olympic sport, tennis would suit me very well. Badminton was a sport I was always good at. I have a lot of fun memories with badminton.

I segued these thoughts into pondering about cancer. If there were a Cancer Olympics, what would it entail?

We have our sprints where we want to get through something as quickly as possible. Maybe it’s a bout with nausea. Maybe it’s intense muscle, joint, or bone pain. Or scans we repeat every few months. It’s safe to say we want to push through cancery things as quickly as possible and get back to living our lives.

Hurdles are high and constant. Scheduling and rescheduling hurdles. Insurance obstacles. Pharmacy barriers in our path. Lab numbers that must be met to qualify for a race. Cancer in general has many hurdles. They are endless if you have a metastatic diagnosis.

Cancer havers run marathons to keep going. Long hauls are measured in time and difficulty. Stamina is an important part of fitness. On the last night of a recent Door County vacation, my sister told me I had stamina. It was a huge compliment. And I believe it to have been true on our trip. I knew I’d have to be prepared to be on the go all day. I conserved energy where and when I could. I ignored how badly neuropathy was aggravating my feet. I plastered on the smile and didn’t complain. I surprised myself how well I did on the trip.

We do gymnastics balancing on a cancer beam as we gracefully walk, leap, and flip along. How do we do it? It looks effortless. We don’t look sick at all! We’re fine, just fine.

Other sports like weightlifting and boxing lend themselves well to cancer Olympics. Remember just because we carry something well doesn’t make it easy. Getting knocked down and always getting back up one more time is exhausting, especially when you don’t know what’s next. Stamina comes into play again.

Research is a team sport like volleyball, basketball, or relay races. I’d like research to work more in tandem with one another when possible. I feel some trials could be carried out across the country and apply to a wider section of people, hence making results and outcomes even stronger. Let’s work together as a team.

Well, I wondered what others thought about the idea of a Cancer Olympics. I asked for input on Twitter and received more answers than I had hoped for. Some cancer havers responded seriously, some added humor, some touched on similar themes and other replies stood out on their own. I’ve made attribution to individuals unless they asked for anonymity.

Question: In what “sport” do you deserve a gold medal?

Treatment and Side Effects

Janice (@JaniceTNBCmets) Gold medal in mTNBC treatment response and duration, although I can’t take credit for it, no skill involved other than enduring toxic chemotherapy & radiation burns. All credit goes to science & pure luck!

Lori (@lori_burwell) Planes, trains, and automobiles. Most transportation ridden to get clinical trial treatment for 2 yrs between my home and NYC.

Anonymous comment: IV pole dancing.

Jill (@missjillo) Waiting. Waiting for results. For tests. For surgeries. For checkups. For appointments. For everything.

Melissa (@rissiekins) Taken over 5000 pills since diagnosis!!

@_BetsyKate Most beanies, hats, scarves and wigs. (I only ever wear the beanies though!)

Sonya (@sonyagoins1) Gold medal in dancing through breast cancer treatments (chemo, double mastectomy, radiation and ongoing chemo). I’m going on a year and still making moves.

Vicky (@VickyStanton09) Gold in steroid induced insomnia over here.

@ThebigCteacher Changing my PICC line dressing with just one hand. They say practise makes perfect, I’ve had plenty of practise!

@brembles Number of failed port sticks. The day before I was released from my stem cell transplant, three different nurses tried and failed to access my port 8 TIMES. I was already incredibly squeamish about the whole process.

Alexander (@AlexanderVancel) 9 months with a partial bowel obstruction, which required a PEG tube the entire time. I couldn’t eat food, I survived on liquid IV nutrition. Yes, it hurt. A lot.

(@thesaltiestcow) Radiation induced cancer 30 years after radiotherapy for teenage bone cancer. Late effects!

Olivia (@lamLIVJames) Gold medal in chemo brain! I have an official diagnosis of Major Cognitive Impairment from multiple sources (chemo, chemical-induced menopause, anesthetic, hormone blockers, and trauma related to multiple medical errors during treatment. I’m permanently disabled (from age 46).

Noel (@AdvocateRoma) Changing careers twice to stay off disability and remain employed when neuropathy and lymphedema prevent me from continuing successfully in my original field.

Multiple Golds

Kristie (@kkbadger1) My gold medal would be earned in port surgeries. I had FIVE between February and April of 2021 to take out and replace a port. Two more if I include the original surgeries in 2012. I’ve had 12 lines of treatment.

Flori (@CANsurvive) Best Her2+ Breast Cancer-grower. 25 years and still growing new crops with no GMOs. Most body parts relocated to “breasts” (5!). Longest Infusion times for Herceptin: 6hrs 24min. Most Annoying Patient. World Class user of the word FUCK while having Brain MRI.

Silke (@Silke4senate) Recovering my stamina: knocked by lesion pressing on sciatic nerve. Recovered. Knocked by Ibrance. Recovered. Knocked by Piqray. Recovered. Knocked by Xeloda heart attack. Recovered. Knocked out by meniscus surgery. Still recovering. Knocked by bone pain. Hoping to recover.

Ilene (@ilenealizah) Longest plastered on smile, Number of words typed into a text message to explain my condition to a “Normie”, Most losses of family members since diagnosis (same might go for friends), Best economic finagling to get copays and healthcare paid for.

Liz (@lizard817) Not sure I belong on this list just 2.5 yrs MBC. Still on ibrance 125 level. Maybe the number of cancer fractures – all over, all ribs etc… The oncologist 1st PETScan read didn’t use medical terms -“all your bones are mashed, crushed” -teased him about his lack of medical terms.

Linda (@HLindaMahler) I’d be happy for an Olympic medal for “Living with MBC while also sole caregiver of my husband who has Alzheimer’s.” Almost no one asks how I’m doing because his decline is more obvious and I look “fine.”

Gerda (@LoboGerda) I win for recurrences, ya bunch of losers!!!

Big Mama (@BigMama22941275) I don’t need a medal, I’m already a champion. I have won my battles so far, with a huge one ahead. I will not lay down my sword . . . I have a battle to win, even if it’s with my own life . . . I will win.

Patty (@Pattybeatslungc) Perservance, Hope, Faith, Joy

Cancer Centers, Advocacy, Doctors, Scans, and More

@CannotReality I deserve a gold medal for being able to schedule appointments with my oncologist, hematologist, and lab all on the same day. Two of which are in different towns.

Dee (@womenofteal) A medal in reading gyn cancer research journal articles and clinical trial protocols.

@ThanksCancer I deserve a gold in cancer overthinking!

Jessica (@jessicaestes) My 9 year old can sit completely still as a needle comes at her – both her arm for labs and her chest for chemo through the port.

Amber (@tinybuddhamom) Sparring with Doctors.

Nancy (@Nancy_Deol) I would gold medal in constant cancer news reading (Feedly) and hyper vigilance. Or maybe hyper vigilance covers it all.

Chris (@gotthegistofit) Timing my breathing/holding my breath for MRI scans. I’ve got it down to split second perfection.

Diarrhea Dash and Related Races

Rafael (@rafaelmarquez) 15 yard waddle to the bathroom with zero leaks.

Donalyn (@cpddmack) Likely lots of contenders for medal in the pertuzumab dash (with chemo induced anemia – an extra special feat!) and the neratinib dash.

Hilary (@sbl365) Sphincter gold medalist right here.

@MalignantM Fastest time to the toilet.

Family Gold and Other Relationships

Kelly (@stage4kelly) Gold medal in eye rolling at all the people who tell me I’ll beat cancer. Gold medal in making cancer muggles uncomfortable with my chirpy “not dead yet!” answer to “how are you” (with sad eye head tilt).

@FollowHeidi Parenting toddlers and working full time while going through chemo. Also; pregnant at the same time.

Addie (@AddieDvorak) Watch and Wait gold medalist son over here.

Amy (@AmyDemilt) Gold in making everyone else feel better. Saying “I’m fine” and that makes them feel good. Gold for family that doesn’t talk about anything important, especially illness.

Tabby (@tabbypotter) Winner of pretending it’s all ok when most my family on both sides pretends it doesn’t exist.

Chris (@ChrisinMass) My brother’s profanity . . . he would be for sure a gold medalist.

Faking It

Michael (@bodagetta) Pretending I’m ok when I’m really not.

@LBSamuelsson I might be the “I’m fine” gold medalist.

Tracey (@GrinterTracey) Uncurling my fist, instead of putting it in someone’s face, when they say “but you look really well.”

Elizabeth (@ElizCLT) Managing strangers’ feelings.

There is so much involved in Cancer Olympics. Kristina (@kristinabaum) commented she kind of wished there was a Survivor Olympics. She lists on her profile she is a distance runner and a triathlete. Best wishes to Kristina in her competitions. I get the feeling she could kick ass in any competition she enters. I wish I had that athleticism. (This is a good time to picture me trying to clear a hurdle.) I can’t speak for Kristina, but my feeling was she wanted the opportunity to prove that a person can come back stronger or just as strong as before diagnosis and completed treatment.

I get it.

But there are too many survivors, too many who have died, and too many who are living with metastatic cancer. We ALL deserve gold if we have heard those chilling words, “You have cancer.” We could fill Ft. Knox. Fund a cure. Not have a Cancer Olympics.

Terri (@6state) had a similar comment about affirming what her body could achieve after cancer. Rowing is her sport where she’d medal as she did it in college. She wrote she now rows at the gym to maintain her health after 6 surgeries, chemo, and radiation. I love that she acknowledged how I often feel when I exercise or have to prove to myself I can do something. She wrote rowing “gives me affirmation after that assault, my body didn’t betray me.” Terri does not have metastatic disease. I unfortunately do. In the metastatic world, my body betrays me a lot, and yet I’m lucky I still have it.

Robin McGee (@TCOrobin) has written an award winning book titled The Cancer Olympics. I may have to check it out. The cover features a photo of those continuous hurdles. Tony Collier (@ethansgrumps) blogs about living with prostate cancer. He replied his gold medal would be in perseverance. Thanks to both Robin and Tony for sharing their related work.

Endurance and stamina come through in all the responses. Somehow, we keep getting through unimaginable things where all our training is in the moment with new situations. I am grateful to everyone who shared their thoughts and part of their cancer experience. I am touched by your honesty and still laugh at those touches of humor.

Thank you.

We are all gold medal winners.

Anchor Moments

Anchors offer security, safety, and control. They keep a boat from floating aimlessly and becoming lost. It’s like a bookmark is to books. Or glue holding a craft together. All these hold something in place.

An anchor chart supports learning in the classroom. It is meant to serve as a reference and move students towards success. In my teaching practice, I had some reading and writing anchor charts that would come out for specific units, whereas others might live in classroom year-round as a permanent anchor. I have been retired for five years now. I no longer have any of my large size anchor charts that I made. Here are some of a friend and former colleague. You can check out more of her work at The Interactive Teacher.

I’ve thought about anchors lately as I continue to go through treatment for metastatic breast cancer. No, I have not made one for cancer. I’m tempted. It would lend itself well to words, visuals, webs, and charts, but I don’t know what point it would serve. I see all of it in my mind; I don’t need an anchor chart.

This is a chart on conversation starters I used. It’s from the Lucy Calkins’ Reading Units of Study.

I could see an anchor chart on conversation stoppers. Here are some examples:

• I’m not going to _________. (discuss that with you, go out for dinner, jeopardize my health)

• Thank you for asking. I don’t feel like talking about it.

• That’s none of your business. Let’s talk about something else.

• I need to ___________ right now. (rest, sit down, catch my breath, nap, hydrate, eat, be alone)

• No. (Covers a wide range of responses.)

• Blank stare. (Also covers a wide range of responses.)

Perhaps a chart of potential treatments or trials I haven’t had yet and pertinent details could be useful. Very useful. The illusion of organization amongst my chaotic cancer life would be welcome. But I don’t want to stare at it 24/7.

Anchor moments were birthed from what I know about anchor charts. These anchor moments would serve as a reference to move me back to hope when I’m feeling depressed, disappointed, or frustrated about how I’m feeling or bad news. A person doesn’t need to have cancer or an illness to benefit from anchor moments. We all have favorite times we remember when we felt happy. In a nutshell, anchor moments equal favorite moments.

Here are a few of my anchor moments:

• Christmas morning as a child with my family

• Rare times when it was just Gram and me

• Bedtime songs that Dad would sing nightly

• Snuggling with my childhood dog

• Standing atop Arthur’s Seat the first time I climbed it and overlooking Edinburgh

• Memories from reading and writing workshop

• Walking in my favorite part of the arboretum no matter the season

• Waking up slowly in that time between sleep and awake feeling well rested

• Laying my head on my pillow at night and counting the day’s blessings

• Lots of Door County vacations with Mom

• Sitting in a lavender field

• Favorite photos of flowers like pink zinnia, champagne rose

• Feeling accomplished running a 5K and reaching my fundraising goal

• Sledding on a beautiful winter day as a 50 year old

• Sedona moments looking up at the red rocks or enjoying Oak Creek

• Making my sister laugh

• Special times with friends

• Enjoying ice cream or a super good chocolate chip cookie

• Time pondering life’s important questions like: What is the best dessert?

My anchor moments take me away, if only briefly. I need to live in the present. There are plenty horrid memories that creep into my now. I can allow myself to bring up happier times. Favorite times remind me of what helps me feel good. They connect me to somewhere safe, happy, and hopeful. Some moments are anchored to my time before cancer. Some are when I have cancer. Cancer is my reality, so I need to identify favorite moments that exist now, too.

Our memories are based on our experiences. I want to have as many fulfilling experiences as I can. These experiences don’t have to be monumental. Sometimes the smaller events carry a bigger meaning than huge ones. My list above goes on and on. I can bring up the anchor moment I need to fit wherever I find myself struggling.

This past weekend I spent time up north in a beautiful area called Door County. It’s located on Wisconsin’s penninsula where Green Bay and Lake Michigan surround it. Most of the towns along the water have marinas filled with speedboats, simple fishing boats, sailboats, and some small yacht vessels. Being on the water is big up there. Looking at the boats anchored on the water reminded me a lot about life. We dock when we need to come ashore. We drop anchor when we want to stop and savor the moment. We sail on when we are ready.

Sailboats anchored off the town Fish Creek.

I’d love to hear what you consider anchor moments.

Off Roading

When I went off roading in Sedona, I went for a rugged adventure. I wanted to experience something new I hadn’t done before. It was an opportunity to see things that I would be unable to see on my own. I had no idea that there would be a cancer connection.

Off roading and cancer were two things that were simply too far apart to be connected.

I didn’t think about cancer at all on my Pink Jeep Tour. Bouncing around as the jeep hit every bump and rock possible while taking in all the scenery was all I could manage. Distractions from metastatic breast cancer are rare for me. The connections between the two hit me after I returned home.

Off roading is quite a metaphor for cancer.

Both take you off the main road you found yourself on that was a smooth and comfortable ride.  Suddenly, the smooth paved road has disappeared. The navigation system doesn’t work. No signs mark the way to tell you where you are. It is unknown territory. To maneuver on this terrain takes skill. The big difference is off roading is fun and cancer is not.

Some refer to cancer as a bump in the road. This may be a fitting description for early stage cancer where treatment is successful and cancer doesn’t return. Metastatic cancer is an unpaved road made of mainly rocks that cause THOUSANDS of bumps. They appear as soon as the road changes from asphalt to dirt and rocks. One jolt is met with another, and then another, followed by countless more. They come rapidly like bullets out of a gun.

There was even a highlight of the tour that was called the staircase of no return where the jeep lurched and jerked down a slope made of rocks that resembled a staircase. Those of us with metastatic disease travel these bumps. We passed the point of no return when we were diagnosed.

The guide described the tour being like a roller coaster. A roller coaster fits my life, too. Up, down, upside down, lightning speed, and filled with twists and turns. Metastatic cancer is like a runaway rollercoaster in the mountains filled with precarious dangers like cliffs, avalanches, and a vicious wild animal or two. You can’t get off it. The topsy-turvy ride is over if you do.

He went on to share with the group how he was trained. It appeared like he was driving with no plan over the course of our 3-hour tour. However, part of his training was to make sure the tires hit exact markers to keep everyone safe. I’ve connected this to precision medicine and targeted treatments. His comments have also made me think about how my decisions matter. Like those tire tracks, I have to make sure I hit things at exactly the right angles at the right moment. And I have no control. I can’t control what my oncologist will say, or test results, or research. I’m trying to drive my own off-road vehicle without training. I’m self-taught and feel I have a certain level of expertise, but man, I wish I knew how to be a better driver on this bumpy road.

The tour was remarkable in the unparalleled beauty it revealed and what it taught me about life that has nothing to do with cancer. Maybe it does.

I was reminded what it felt like to feel free.

To celebrate life.

To continue to find meaning.

I rediscovered how important it is to know my worth. I am worth a lot. Confidence was gained every day I hiked. I began my vacation being unsure about my steps and gradually I found myself more decisive on where I placed my foot. I made very tiny leaps from one rock to another. Reminders to live in the moment and live fully are welcome.

I want to share one final thought on the agave plant. It has nothing to do with tequila. The agave has a life span of 20-25 years and it blooms only once in its life. It sprouts a tall stalk over 6 feet that resembles an asparagus stalk when it is near the end of its life. This can grow 3 to 8 inches a day when it gets ready to bloom. The blossoms are yellow and then they turn red. They bloom and the plant is said to be most beautiful at the end of its life. I find that deeply sad. The rest of our group seemed to find it oddly beautiful. I refuse to draw parallels to human life, to my life. It doesn’t make sense to me that something that has taken so long to shine only lasts a few days.

And yet I can’t help it. Since I look for meaning in things, I wonder what I am meant to know from the agave. A lot of goodness, joy, and success has come my way over the past couple of years. I’ve always been a late bloomer. Is this it?

No, I am not an agave plant. I’ve bloomed more than once.

Beauty blooms and thrives in inhospitable conditions. It can sprout up from cracks in rocks, tolerate insufferable heat, and grow without rain. I can relate. I stay alive even with cancer. I shall continue to bloom like a rare rose, a wildflower, or even a desert cactus.

The off roading adventure was beyond bumpy. It was also healing. I saw scenery I would have no other way of seeing. I discovered an uncrowded spot to watch the sunset that was easily accessible. It was healing by going and getting away from my life here. Sadly, the vortexes did not have the healing power I hoped. Maybe I’m a fool for hoping they would. Stranger things have happened. Inexplicable natural phenomenon rests solidly in that category. So many cancer things don’t make sense to me anyway.

I’ll take every bit of hope I can get on this bumpy road.

Messages From Dad

I miss both of my parents every day. My dad died 25 years ago; my mom has been gone 8 years. Twenty-five years is a long time. I was able to make 17 more years of memories with my mom. Memories with my dad haven’t faded so much as they are farther back. More effort is required to revisit them.

I have hit the age where more people in my age group have lost a parent. We share our hurt. I also know people who have both parents still living and they don’t see or talk to them very often. I don’t wish them ill will. I’m thrilled they are still alive. It’s wonderful these friends and acquaintances don’t know the searing pain of losing a parent. They don’t live with grief that runs deep and long. But still, I feel it’s unfair that I’ve lost both. My parents were older. They developed health problems. They died. We all know life isn’t fair.

A while back, I was wishing for something from my dad. My mom pops up often in dreams and waking memories. I don’t get a lot of that from my dad. Time passed factors into it. I put it out there that I wanted to hear from him. In dreams, or signs, or messages, or something. Anything. I miss him a great deal. I don’t think it’s said enough how much adults still need parental love.

One of my routines before crawling into bed is to read for a few minutes. I settled one night into an oak rocker in my bedroom that I picked up at an estate sale. It’s solidly made and has a simple patterned upholstered seat and back. Soft lighting provided by a Tiffany like lamp with shades of blues and greens lit the corner of my bedroom. I rocked gently and read.

At one point, I turned my head to the left toward the table where the lamp sat.

And there he was.

.

.

.

Not as a ghost, hallucination, or in any human form. I saw his handwriting poking out from a small stack of treasures that has sat there between five to ten years.

It had been there every night. His handwriting jumped out this night when I needed a sign.

It was a 3 x 5 notecard that had completely browned over time. My father served in WWII. This could have fit in his wallet but I’m not sure it did because it wasn’t bent. If not in his wallet, it was likely in a desk drawer or the top drawer in the chest where a lot of papers and some jewelry were kept. I’m not sure where I discovered it. I felt it was important and I took it. Clearly, I also forgot about it, but here it was to remind me when I needed it. It was one of those moments mixed with smiles and a slow but steady flow of tears. He had copied a quote from Winston Churchill about wartime living on the notecard.

I pulled the notecard out with my thumb and index finger like one would in a magic trick where you picked any card from cards splayed in front of you like a fan. I read it slowly as if it were a riddle, for that was what it felt to me. The word defiance hit me stronger than the others. I don’t want to dwell in the battle imagery that many who live with cancer use and just as many find cringeworthy. But hey, there it was staring at me in the face. These words were about war, not cancer. Exceptions must be made. If anyone has applied them to cancer, it’s me.

Allow me to say I don’t feel I am in defeat. I feel beat up. I feel constantly up against some stupid cancer or noncancer thing. I feel like I can’t get through to the very people working to keep me alive. I feel exhausted and that I never can catch a break. I feel defiant though and unwilling to give an inch more to cancer.

As far as the other words are concerned, I’m always searching for resolution. Mainly, I search at my oncology appointments through time with my oncologist and all the tests and treatments I do. But I look for answers in so many places. I read articles. I follow leads on the internet. I make note of studies others are in that may be of some benefit to me. There are group chats. I talk to and message friends. Virtual conferences are attended such as the SABCS (San Antonio Breast Cancer Symposium) and LBBC (Living Beyond Breast Cancer). Occasionally, I’ll listen to a podcast. To be honest, it all overwhelms me. My days can’t be only about metastatic breast cancer.

Magnanimity and good will are always good guiding words. Generosity and compassion should never be overlooked. We need both in our world now more than ever.

I set the card back on the side table and shuffled through what else was in the small stack. There was a prayer book with a daily reflection I’d given my mom one year for her birthday. I found some of my dad’s business cards and his resumé. There is a grief journal I started after my mom died. The journal deserves a separate post of its own.

I also found the last birthday card I gave my dad along with more of those smiles and loving tears.

The middle section jumped out to me where it read he knew in his heart that I’d find a way. I realize I chose the card, but it was chosen based on who he was. I always knew my dad’s belief in me was present and constant whether whatever I did was big or small. I’m sure it’s why I chose this particular card. He knew I’d do well on tests. He thought it was great I played tennis. He supported all my band activities. He happily shuttled me back and forth from college to home on weekends. My dad knew I’d find a way. As evidenced on this card, even as a young adult the idea of finding a way was developing, perhaps just a seed of the oak tree pictured on the card. I would have to find my way a lot sooner without him.

A few weeks later he came to me again, this time in a dream. I was at my grandma’s farmhouse in the kitchen, milling around where the cookie jar was kept. Ah, that cookie jar. My grandma, mom, and dad were all in the dining room. Dad called for me to come into the living room. As I got closer to the adjoining doorway, everything went bright white and I couldn’t see. I knew my dad was going to hug me. I kept inching forward into the blinding light. Eventually, I shuffled into him and we hugged. I felt warm all over and felt a tight squeeze of his arms around me. I couldn’t see anything. Then I was jolted awake. I always wake up too soon. I am convinced it was a real hug from him. Make of that what you will.

I got my sign, my message, my something. I received several. Thanks, Dad.

You are there for me.

Always.