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?

Finding A Way and the Blog Hop

Once again it is time for Nancy’s 2021 Summer Blogging Challenge . This is a wonderful opportunity to learn about one another, discover new blogs, and share more about my own writing process. My approach to Nancy’s questions is much lighter than last year. You’ll see what I mean.

Who are you?

Somedays I don’t know. I see a familiar stranger in the mirror. Who I feel I am seems to change often. My appearance doesn’t seem stable. We are so much more than our appearance. Who I am isn’t based on what I do (or did). It was easy to tie my identity to my career as a teacher, but what remains now that I’ve been retired for five years?

Am I a writer? Amateur photographer? Professional patient? International mystery spy? Oops . . . it’s in your best interest to forget that last one.

Quite simply, I’m me.  

 

This is how I remember myself in better days.

I love pajamas. I make really good brownies. I hate cleaning. I am not fond of chipmunks or ground squirrels (a lot like a chipmunk but bigger with different markings).

Lately, I’ve thought of myself as a depressed optimist.

I spent my career teaching and am lucky I got to do what I loved for so long. Second graders will always hold a special place in my heart.

I’ve always been a reader and a writer. I love relaxing with a good book. I bounce between a couple of writing ideas at a time. I write a blog on living with cancer while living well that you are reading now! Diagnosed with metastatic breast cancer in 2012, I’ve blogged weekly about my thoughts and experiences for the last three years.

A lot of my time is spent focused on my health. 2021 has been harder for me than 2020. Every month I’ve had something that’s presented a problem for me. Hair falling out. A hospital stay. Repeated surgeries. Failed treatments. I am someone who tries hard and is hard on myself when something doesn’t work out. It seems the rest of the world slowly reemerged from the lockdown of COVID and embraced the year more positively than I have.

What’s been your biggest blogging roadblock this year and did you come up with a way to get around it?

I haven’t felt blocked in terms of content and ideas. Material usually presents itself. I’m not sure if that will continue.

A bigger roadblock is exposure. I want to reach more people, but I haven’t garnered as many followers as I hoped I would. I feel established, but I don’t do a lot of promoting.

No, I haven’t found a way to get around it and maybe it isn’t necessary. Being able to share and have people read what I write is a privilege for me. I’ve tried to toot my horn with a Facebook page catered to my blog and cancer content. You can follow that here. What I’ve found is when people don’t have a personal connection from their own experience or through a loved one, it’s too heavy. Photos of puppies and kittens get more attention.

So, basically, I need to figure out how to use puppies and kittens to attract followers.

What’s something you accomplished with your blog this year that you’re proud of?

Spelling.

Try fam-trastuzumab-deruxtecan. It’s both hard to say and spell. The brand name Enhertu is much shorter. Nailing some of these drug names is an accomplishment. How about a cancer spelling bee?

On a more serious note, I’ve continued to publish consistently. I’ve included narratives to share my experiences as a patient. I’ve written more poetry to express myself. Letting some vulnerability show up through my words has been another revealing step for me.

More readers are responding to my mid-week posts where I share a thought-provoking quote. I’ve honestly thought about phasing this out at the end of the year. I felt it hasn’t been very successful at times. I am reassessing what to do with my Wednesday Words posts.

Here is a sample from Wednesday Words. Do I keep sharing these pearls of wisdom?

What are a couple of your best blogging tips?

Blogging gratuities are never expected but always appreciated. I have PayPal and Venmo.

Am I kidding?

Send me some money and find out.

Or you can follow my blog. Those are the only choices.

As a writer, my biggest tip is to write what you want. It’s more authentic that way. Sincere writing circles me back to that first question about who I am. Some of my favorite pieces haven’t racked up the views or comments I had hoped they would, whereas a post on writing and stories is still surprisingly well read. You never know how something will go over which is why it’s important the writer likes it. When my heart shows up through my words, I believe I make a stronger connection with readers.

How do you handle negative feedback or comments?

Everyone loves what I write. Wink, wink. I have received comments offering different perspectives from time to time, but nothing I would call overtly negative. I confess I wouldn’t like negative feedback, but I think it’s best to think of it as constructive criticism and turn it into a learning opportunity. Growth can come from these discussions. Or I can delete them and grow that way.

Share a link to a favorite post you’ve written recently that you want more people to read.

One is such a lonely number. Two is better. Three’s company.

I often return to Love Letter to My Future Self when I need a feel good boost.

Cancer Haiku shares big ideas about cancer in a few words.

A Day of Surgery gives a glimpse into the more medical side of my life.

Thank you, Nancy, for your summer blogging challenge. It’s an awesome opportunity to discover new blogs and share mine. I also love reading my fellow bloggers’ responses to your questions. I hope many others will check them out at Nancy’s Point. Click on the link below to access other blogs in the hop.

Enjoy these dwindling days of summer weather.

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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.

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.

B Positive

B Positive is a CBS sit-com about a therapist who needs a kidney donor and is looking for a match. He can’t find one within his family to match his B-positive blood type. A woman he once knew offers him one of hers and is a match. The series gives a glimpse into the life of someone waiting for a transplant while still portraying someone living a normal and crazy life. The show brings visibility to hard things through humor.

Could a similar comedy work with metastatic breast cancer as the sometimes background/sometimes foreground subject matter? I’ve learned things about transplants that I didn’t know before I started watching B Positive. It’s been an educational tool like I imagine a breast cancer “comedy” being. Comedy isn’t the right word because there’s nothing funny about any cancer. I don’t know what the right words would be.

A serious comedy?

I know I’ve had my moments where I’ve come home from an oncology appointment with some doubt that it was me in the exam room. Once I asked an oncologist to look harder at one of my nipples. Honestly, who does that? A closer look was taken. All was fine. Another time I had an enlightening conversation about discomfort “down there,” my vagina, and vaginal dryness. I assured him I didn’t want him to check it out. He thought for a moment and shot back about how estrogen deprived I was. Suddenly, it all made perfect sense. We moved back to discussing the upper half of my body. I daresay these visits are comedy gold packed with meaningful content.

Uncomfortable humor is always hilarious to people not experiencing it.

What other meaningful content could be balanced with comedy? Here are a few ideas:

• Diagnosis

• Hope

• Fear

•  Pinkwashing

• October (We Are Aware) Awareness Month

• Identity

• Comments

• Clinical Trials

• Research

• Chemotherapy

• Hair

• Side Effects

• Battling, Fighting, Losing the Battle/Fight

• Scanxiety

• Life

• Success

• Family and Friend Issues

• Loss

• Day-to-Day Life

• Working and Treatment

• Relationships

• Positivity

• Early and Late Stage Perspectives

• Kale

Death of course would need to be addressed. I don’t think death is funny so I’m not including it in the list to balance with comedy.

I don’t know how any of this would work.

I don’t know if it could work.

Viewers could get a glimpse into MBC. Would it be hard? Yes. Would it be done correctly? I have no idea. It bothers me enough now when commercials for medication intended for thrivers are shown and no one is wearing a bandana or having any difficulty at all. Other characters on TV or in books don’t meet my expectations either. They either die such a painful death that another character is affected more, or they are portrayed as achieving goals that are pretty unreasonable.

What would this amazing show be called? Comments about breasts that are off the cuff or meant to be cute, funny, or sexy are instead incredibly offensive. Breasts and boobs should be removed from the title. Nor should the title be scary. It is a comedy even if it contains serious subject matter. One of my friends calls herself Meta Martha. A title like this would be short, sweet, and to the point. I’m already using it as a working title. Or perhaps just Mets. It could be mistaken as a sports show and pull in more male viewers.

B Positive is a title that carries two meanings. There is the reference to the main character Drew’s blood type of B+ that he needs to match for a successful kidney transplant. The other meaning is to be positive with whatever life throws at you. I’m on board with positivity (usually). Positivity is a feel good energy. Positive people attract like-minded individuals with similar energy. I feel better when I am positive. I am often described as positive. All good.

And yet, it takes more than “being positive” to “beat” metastatic breast cancer. Someone I hadn’t seen in years told me of someone she knew who had Stage IV cancer and now didn’t have it anymore. She was treated at Carbone as I am and had chosen western medicine to treat the cancer. Skeptical, I asked for her to share a bit more about this woman’s story. Positivity was the instant answer. Positivity cured her. It certainly could have helped, however, it isn’t measurable. It is better than negativity. I figured there was more to this story but didn’t ask. I changed the subject. Later, this friend also shared her daughter (whom I taught) cried when she heard I got sick years ago. She asked about my support network and offered help with meals, driving, or whatever. Both were unexpected comments that touched me. Empathy and kindness may need to replace the be positive slogan.

Hospitals promote programs and research while treating cancer. Reputable foundations and charities don’t get the exposure they deserve. News stories are often missing important information. Celebrity deaths bring temporary attention. Celebrity survivors don’t help much. They beat it after all. All of these combined haven’t brought information and a sense of urgency to people who aren’t affected personally. If you haven’t been personally affected, the cause isn’t as urgent.

TV shows have nationwide exposure and massive audiences.

Metastatic breast cancer needs that kind of exposure.

Maybe I need to write a pilot.

Martha, what do you think?

Liar, Liar, Pants on Fire

I was an honest person until diagnosed with cancer. It was my private business. Business that would become public when I needed to take off time from teaching. People would know when they’d see me going about life wearing a wrap on my head when bald. I chose to keep my Stage IV de novo diagnosis quiet for years as it was my choice. Only a few close friends knew, and my mother and sister, along with to whomever they may have blabbed. Why? I wanted to work and be assessed like everyone else. I didn’t want to appear limited. I didn’t need others taking up the slack for me. I certainly didn’t need pity, whispers, or in-my-face questions. One dear friend suggested I would have had even more support and seen more truly good people in my life if I shared from the start. She is probably right.

I chose to lie.

I’ve had lots of practice over the years. I lie easily and I’m a good liar. I’ve done it when I don’t want to talk about cancer and myself. Chances are I’ve lied to you at some point. If you’re nosey and intrusive, I’m not sorry. If you’re my friend, I am sorry. The truth is painful for me and I need to decide what I want to share about myself and when.

I can honestly tell you I will do it again.

I’ve held some medication back when hospitalized a few years ago because I knew they (nurses because of hospital rules) were going to take it away from me. I needed it. In the end, I didn’t take it and understood why it was important not to, but I did lie and even schemed to keep some of it. Truth be told, I believe they lied to me about being able to have access to it when I needed it. If it was to be denied, then I would be denied.

I haven’t been forthcoming (I lied) about the severity of side effects to my oncologists. This isn’t that uncommon. If a drug is working, having the dose reduced or switching to something else isn’t an option that I feel I can risk. I’ve learned where the line is of tolerable pain and too much pain and try not to use language that indicates the latter. Now, this isn’t particularly helpful because side effects need to be documented so patients are believed when they report them.

I am trying to reform.

This next tidbit has been a secret only a few have known until now. There were restrictions where patients were allowed to be when I spent time in the hospital a few months ago. Cancer patients had to stay in the cancer area, which was made even smaller due to the wing where patients were most compromised due to transfusions. To get my 30 minutes of walking in per day involved a lot of repetitive back and forth that rather annoyed me and made me feel stupid. I (somewhat) jokingly texted with a friend that I was thinking of hopping on the elevator I located and giving myself a wider territory. A conversational orderly told me the elevators could take me anywhere in the hospital when I asked. I thanked him. Perhaps I’d even escape, yet this was the coldest weekend in Wisconsin all winter. I wouldn’t get far. I opted against it because it really wasn’t in my best interest to put myself in unsterile areas.

Technically, these elevators were just outside where I was allowed to be.

However, the B6 stairwell was well within the oncology section of the hospital. I had walked by it probably a hundred times when it occurred to me this would be a perfect place to walk. I probably wouldn’t see anyone. It wasn’t a main stairwell. I could climb stairs up and down without holding onto the rail. At this point, I had been unhooked from the IV machine for a couple of hours each day and I was free. I’d keep my mask on because I wasn’t throwing all caution to the wind. So, I walked along the hospital corridor like I was minding my own business. I checked ahead of me and behind to make sure there were no personnel or any patients around.

Into the stairwell I darted.

It was wonderful. Up and down I went to my heart’s content. When I felt satisfied that I had done some good repetitive climbing, I instinctively stood inside the stairwell listening for noises like footsteps or voices. My behavior alarmed me only slightly with the realization I had some makings of a criminal inside me.

I’d do it again.

In fact, I did the next day.

Was this lying or cheating? I would argue I stayed within my area. By entering into the stairwell that was in my area, I was merely extending my designated space.

I also have some makings of a lawyer. I’d credit my years as a teacher where many a student impressed me and taught me how to break rules later in life. It was pretty easy get confessions and disprove their stories. They always left clues. I’m careful I cover my tracks.

Yes, cancer has turned me into a liar. As I mentioned, I’ve done it for self-preservation. The lies are part of the invisible wall I sometimes need around me to keep myself emotionally safe. I also learned other things over time. I’ve discovered that no one really cares what I do. No one is watching that closely. I could get away with an awful lot if I had a devious nature.

The question isn’t who is going to let me; it’s who is going to stop me.

Ayn Rand

I operate from this quote often because I’m sick of things being ripped from me because of cancer. If I have a plan and can present myself well, permission is secondary. I can think of one example where I was told I couldn’t pursue a fundraiser I had planned. Not accepting this as the final answer, I tweaked the plan and reworded a few things so it could move forward.

Ayn Rand’s quote has given me courage to move like I know what I’m doing even when I don’t. (Living with cancer presents this opportunity often.) My college roommate came up for a visit a few years ago and we wanted to visit our former dorm. It was closed for summer and being used to host those staying for conferences. Why couldn’t we appear to be someone who belonged? We needed to walk in like we belonged there and knew where we were heading, while avoiding eye contact with anyone at the front desk. Doors and elevators were locked but we were able to talk our way in by pleading our case to an empathetic custodian.

And again, when it comes right down to it, no one cares what I do. I don’t draw attention. If I’m under the radar and get my way, I still get my way. If a lie has saved me from tears or a conversation I don’t want to have, so be it. To my credit, I haven’t told any huge whoppers.

I’m not under oath to tell the whole truth and nothing but the truth.

I’m not even on trial.

And that’s the truth.

So help me God.

More Vortex Lessons

The Airport Vortex is where the energy affected me the strongest on my recent trip to Sedona.

Everything started off as planned. I was thrilled that the hike sloped downward and the steps weren’t too difficult. I felt waves of gratitude that I wouldn’t have to climb up them. This was a loop route. Long, but a loop.

One of the rules established from day one of hiking was that breaks were good. We took breaks often to recover and press on. One of these breaks was at a spot overlooking Sedona and the rocks as far as the eye could see. I noticed it looked like people sat above us on a rock formation to our right. I wondered if that could be the vortex and strolled over to read some signage before the climb. I didn’t see anything about the vortex.

Whoosh!

I was hit by sudden dizziness. Out of the blue. It only lasted for a moment, yet it shook my confidence. Was this the energy effect again? Why did I seem to experience these unsettling feelings rather than the euphoric tingling and wellness others had described? Hmmph. Seemed typical for me. I sat down at the overlook and nonchalantly got out my Gatorade.

Karil was ready to move on. We’ve been friends since 4th grade. I was not quite recovered and had to tell her I felt momentarily dizzy. I wondered if it was energetic. We chatted a bit with other hikers and learned the summit to the vortex was where we thought it might be. I was sure I could make it.

Off we went.

It was a short, steep climb. Ropes were secured to the sides to define a safe route. They came in handy to hold as you climbed. The last twenty feet or so consisted of one of those one way fairly narrow ascents. I announced I was lying down when I got to the top.

And so I did.

There I stayed. Opening my heart to the energy. Recharging my soul.

I recited my affirmations and prayed. My heart rate lowered 25-30 points. It felt good. No big whoosh of energy. I felt perfectly healthy on the summit. Fully alive.

Alas, all good things must come to an end. We decided we were ready to head back to the car which meant we had to climb up those rock steps I earlier had been so erroneously grateful to not have to climb up. Two breaks were taken quickly. Because of me. On the second one, I desperately looked for someplace to sit. I felt nauseous. I was on the edge of spontaneously sobbing. Energy worked viciously through me. Out with the bad, in with the good.

Backtrack to earlier in the week. Karil had shared a decision she may make where she was worried how she might be affected by someone’s reaction.

Backtrack farther. My fitness coach has often asked me a simple question when things get too hard for me. She asks, “So what?” So what if I can’t run like I want? So what if I can’t lift as much as I have before? So what if I’m not exactly where I want to be? The question all comes down to the narrative I tell myself (I’ve failed. I’m not good enough. I’m a wimp.) versus what it really means (I’m dealing with effects from cancer treatments. It isn’t a defining event. I can do many other things.).

I gave Karil a “So what?” scenario for her situation earlier in the week. It stayed on her mind.

She chose this moment to throw the question back to me.

So what if I couldn’t make it back to the car?

I could go back down to the bottom of the trail where there were a couple of prized parking spots off the road. She’d finish the climb and pick me up on her way down the road.

Ugh. I wanted to make it up the trail. It’s what I planned to do. Goals are to be met. Nothing else is acceptable. I’m a wimp if I can’t do it. That’s the narrative that ran through my mind. What did it really mean? Nothing. Completing the path up was not mandatory. I had another choice.

I told her I would take her offer.

Down I went. In minutes I was sitting in the shade depleting all my fluids I brought with me. Hydrating was a major priority on this vacation. I couldn’t get enough to drink for the rest of the day.

Part of me still wanted to make it back to the car. As close to losing it as I was, I recognized this was a teaching opportunity where I could lead by example. The teacher in me continues to live. It was also an excellent opportunity for me to practice what I preach.

Obviously, I need to be more careful what I preach.

Some people apparently listen.

For about two hours after this, my left eye burned, and my left nostril couldn’t stop dripping. My left side just felt watery. I took two recovery naps that afternoon. And I kept hydrating. Then all was well again. It was a strange reaction that I can’t attribute to anything. Oddly, it was my right side that felt a pulling a few days earlier on the Boynton Canyon hike.

Lessons from the Airport Vortex affirmed the following:

  1. I’m not in as good as shape as I wanted, but I still showed up. I will always do my best to show up.
  2. Although I didn’t take a poll at the vortex, the chances are pretty darn good I was the only one climbing that day with active cancer. That isn’t a small feat. It takes determination, a strong stubborn disposition, and stupidity. Forget that last thing. I’m proud of what I accomplish.
  3. The narrative I tell myself and what is really true is a work in progress for me.
  4. Energy doesn’t have to be understood to have an effect.
  5. I am infinitesimally small compared to the vast grandeur around me, but I am connected to that grandeur. We all are.

Epic vacations don’t come along often. The location, the scenery, and the hiking made this vacation unlike any other I’ve taken. It may sound like it was a lot of physical exertion. I would call it an active vacation. Nature is where I feel happy. It was in the 90s most afternoons. We hiked early in the morning. It still got warm, but Arizona’s dry heat feels cooler than Wisconsin’s humidity. Experiencing all of this with metastatic breast cancer makes it all the more special for me. Life is good.

Love Letter to My Future Self

A writing prompt is often given to write about what you would tell your younger self. I think the idea is an older and wiser person could reflect on the insecurities that never came to fruition. Maybe it’s an opportunity to focus on all the positives that have come to pass. As we age, we learn about what matters in life, where we find joy, and experience a stumble or two we’d like to avoid if given the chance. We don’t get to go back in time for do-overs. My younger self would feel doomed if I told her she wound up with metastatic breast cancer at 41. Wouldn’t she have the opportunity to change it? She sure tried. She/ we/ I had diagnostic mammograms for years in our 30s due to my mother’s breast cancer. It wasn’t enough. Cancer was missed. I know when I think this happened. I was dismissed and told not to worry when I was sweating profusely. Major sweat blobs. I think my lymph nodes were blocked, but I’m not a doctor. Iffy mammograms were followed up by ultrasound and I was always given an all clear. I can’t go back. Telling my younger self to be proactive wouldn’t help.

I was proactive.

Looking back at what could have been “if only” doesn’t provide comfort. The past is unchangeable. I think all of us feel a certain invincible quality when younger and that bad things can’t touch us until we are much older. Quite simply, it’s unbelievable. Our lives stretch out indefinitely in front of us when we are in our twenties and even our thirties. Our lives are finally just beginning.

So instead, how about standing where you are now and advising your future self? Now there’s an interesting prompt. It creates an opportunity where you can pause and dream about goals. I find myself looking back and forward. There are some logistic factors that don’t jive well. My future self would already know what happened in present time. Well, the metastatic breast cancer is out of the bag. I am wiser, know what matters to me now, and what brings me joy. For a few moments, I set my modesty aside as I think about my future. Here is what would I like to say to the me ten years in the future.

Dearest Kristie,

How did you make it to your 60s? I’m not sure, but know intention is something you carried with yourself day by day and projected into the future. Hope and sheer belief are part of it. Somehow you kept going.

You’ve been through a lot over ten years, but you’ve come out better for it.

Life is good.

As you know, you’re still awesome. People appreciate your perspective and wisdom. You are still a trusted ear where others share their private thoughts. Your sense of humor still makes many smile and laugh.

I’m proud of you. You never gave up belief that you could go into long term remission. You continued to give back to Carbone Cancer Center. They listen to you, sort of. You’ve supported their research. You’ve spoken publicly at various functions. I am glad you are working for others in hope they have the same outcome as you. You are a driving force.

I know you’ve worked hard. You’ve had hundreds of treatments and endured even more side effects. You’ve submitted to so many tests and scans so you would have information to plan what’s next. You’ve swallowed supplements and medications that have improved how you feel.  You rejected norms, medians, and negativity from Day 1. You’ve embraced exercise, therapy, affirmations, and surrounded yourself with those who are supportive. You’ve even tried a few crazy things. You’ve worked on having fun and staying hopeful. You made plans. You worked hard.

You look outstanding!

Seriously girl, how do you do it? Cancer ages a person and it did on the inside. Lots of physical things happened on the inside that made you an old lady. And there was a good year during the COVID pandemic where your hair and outward appearance took some punches from tough chemo. Oh, how you loved your yoga pants! You still can’t decide if you’re more gorgeous with white shimmery hair or the more youthful brownish red from the magic bottle. Keep up the good work. You are beautiful.

You still help others. You have found a way to connect with children again and share the love of learning and thinking. Besides being happy and healthy with a few people that love you, it’s really all you ever needed. Hold on to it tightly.

Keep holding on to belief and hope. Never abandon these. They will always serve you well.

I know there are readers who are thinking I’m delusional in writing about my life ten years from now. Researchers can’t put their finger on why some survive for decades with metastatic cancer. What if it’s pure denial? What if it’s the delusion and the denial that got me here? Denial has its merits. I’ll do me.

You are loved by many, including yourself. You’ve tried to return that love to others.

Much love,

Kristie xxx

A favorite photo from spring

This is very similar to another writing activity where the writer sits down, envisions the future, and writes about life ten or twenty years from now envisioning it as well as it possibly can go. There are connections to taking an active role in your life rather than a passive one, setting goals and planning, and daring to dream. I completed this activity about five years ago. It is filled with some very concrete ideas. Retiring with a full retirement package came true much earlier than planned. I was on medical leave, so the writing was on the wall. Writing was mentioned, blogging was not. I’m now well into my third year blogging.

I hope you make the time to write yourself a letter and tuck it away for a decade or so. Time flies. Don’t wait. Happy writing.

Always.

Cancer and Exercise

The American Cancer Society recommends at least 150 minutes of moderately intense activity each week for adults. This is equal to a brisk walk of about 3 miles per hour. More vigorous activity where you raise your heartbeat and sweat for 75 minutes each week can be swapped for the 150 minutes. Spreading these minutes throughout the week is preferred over cramming them into one day or activity.

Exercise won’t prevent cancer, but it can lower risk. It’s shocking how many sources still falsely claim exercise prevents cancer.

With that being said, exercise can improve overall survival for those going through treatment and for those with metastatic cancer. I have heard this from my doctors, nurses, and so many articles I’ve read. Overall survival is still a murky, unspecified amount of time. I do believe exercise has been a factor in my survival with metastatic cancer.

Exercising while receiving treatment for cancer is encouraged, always with the caveat to do what you are able. Run it by your doctor (pun intended) if you’re starting something new. Walking, lifting weights, running, yoga, swimming, etc. all reap similar benefits of maintaining healthy weight, improving heart and lung fitness, increasing muscle strength and endurance, and managing stress. Boosting immune functioning, energy, and improving sleep are additional benefits of exercise. The benefits go on and on.

Maintaining a healthy weight is a problem for me. I’ve maintained my slightly above average weight for 2-3 years. I blame it on treatment drugs and steroids. Ice cream has always been in the background. It’s hard to blame something you love. Whether my weight is considered healthy or not, I’ve maintained it in addition to maintaining an exercise and movement schedule.

I exercise even on days when I feel poorly because I believe it can affect my overall survival. I don’t have a choice. Sometimes it even makes whatever is bothering me (mood, fatigue, aches) go away. I upgraded my Fitbit to a higher version and now need to contend with something called zone minutes rather than just total active minutes. These zone minutes are the equivalent of the 150 minutes of moderately intense activity. Whereas I had no trouble reaching my active minutes, it was a wakeup call that I needed to do more to meet cardio targets. Now I’m getting those minutes and more thanks to work with my weights and walking.

Personally, I have many reasons why I exercise.

• I know I’m healthier when I exercise.

• I can see myself making progress and getting stronger.

• Regular exercise, especially cardio, boosts my immune system. When I encounter bumps like an infection or minor procedures, I think I recover faster if I’m making an effort to care for my body. If this is only psychological, it still works for me (much in the same way I see dark chocolate as a health food).

• From a treatment perspective, exercise and moving helps me do better with treatment and side effects.

• Exercise also keeps me alive. Again, I think it makes a difference. Staying alive is a HUGE benefit to me.

I know it takes me longer to achieve physical goals and longer to recover once I have. I exercise so I have a chance at keeping up if I’m with others.

• Exercise relieves stress and provides more energy.

• Exercise makes me feel more like me.

• I exercise for me and I do it for those I love.

I mentioned above that exercise helps me deal with bumps in the road better. A case in point involves issues I’ve had with my port. I had zero pain and didn’t take one Tylenol after it was replaced. The next morning, I got up early to do weights before my treatment. I started literally with just the motions and used lighter weights before feeling comfortable to do my normal routine. The day after that, I walked my 5K route. My surgeon said he wouldn’t tell people to alter any of their activities, so I proceeded as normally as I could. Exercise is part of my normal routine.

Walking is my favorite way to exercise. I don’t need a power workout every day. A brisk walk of 3 miles an hour done a few times a week surpasses 150 minutes a week. Breaking it down to 30 minutes a day for five days a week is another way to get your minutes. Some of the nitty gritty behind the health benefits of walking include better heart and lung fitness, stronger bones and improved balance, and increased muscle strength and endurance. Walking can also help manage conditions like high blood pressure, joint and muscle stiffness, and diabetes. No fancy equipment is needed, and it can be done almost anywhere. Just be sure to avoid cars, wild animals, and cliffs and such.

Weights are my second favorite way to exercise. I love meeting goals and seeing myself improve. I hate backing off when I’ve needed to readjust my goals and do less when my body isn’t up to lifting. Then I lose ground and feel frustrated because I have to work three times harder to regain half of what I once was able to do. The satisfaction is just as sweet when I reach a new (or new again) benchmark. Presses, deadlifts, squats, swings, rows, and halos give me lots of variety and opportunity for a love hate type of workout. I like that strength training increases my bone density and reduces the risk of fractures. I don’t mind the increased muscle mass either. Perhaps this is because it’s such a minimal change in my situation. I’m not known for my abs of steel . . . yet. I’m not sure what I’m known for.

Swimming may be a great choice if you’re looking for something that takes stress off your body and joints. It has many of the same benefits as walking in terms of cardiovascular and pulmonary health, maintaining a healthy weight, and building muscle strength and stamina. Walking is easy on a person’s joints, but swimming is even easier on joints because the water removes a lot of impact stress on your body. I have never been a strong swimmer and have lost any minimal ability I had other than floating. I thought it would be an easy way to work all my muscles and stay fit and was almost ready to sign up for lessons. Building endurance and cardiovascular fitness might even be fun and not feel like work that involves sweat and exhaustion. Then Covid-19 hit and my thoughts of swimming sank like a steel anchor.

Biking is another one of my favorite ways to exercise because it involves fitness with enjoying bike trails. I joke that it’s something I can do while technically sitting down, but I’ve realized I’m fairly serious about it. Sitting down has its merits. Like swimming, it’s easier on the joints and is good for building muscles. I don’t get to bike as often as I’d like because of the effort involved attaching the bike rack to my car, loading and unloading my bike, and making sure I still have energy to do some quality biking.

Yoga looks easier because it has some of those sitting down poses, or even lying down poses, but it’s deceiving. I’ve made this comment before. Maybe this is because I find strength, balance, and flexibility at the same time incredibly challenging. Yoga pushes me. Holding poses forces me to slow down and not try to lift more or be faster. Sometimes just being in the moment is work enough and that is the magic of yoga. Working on flexibility is good practice for me. God knows my life needs physical and emotional flexibility.

Being physically fit can make living with cancer a little easier. I’ve found information on exercise is out there for those going through treatment and post recovery. Exercise is addressed as making short term treatment easier and post treatment recovery smoother. It is touted as reducing risk for everyone, not a guarantee. I had trouble finding much on how exercise helps those of us living with metastatic cancer. It figures. The Stage IV population is frequently left out of topics that includes other cancer stages. I’ve made the decision to extend the exercise recommendations to me and those with Stage IV. Dealing with ongoing cancer is as important as short term treatment and recovery. We all need to be included. Lessening side effects, extending overall survival, and feeling good are all important. For everyone.

Always.

For further reading: My friend and fellow blogger Gogs Gagnon has written about the importance of exercise as part of his post prostate cancer survivorship plan. You can read about his thoughts and perspective here.