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?

Our Bodies

I am often whining (with reason) about how my body feels. Fatigue. Bone and joint pain. Nausea. Blah. My latest protocol wipes me out for about two weeks with a layer of yuck.

Tests reflect what cancer is doing inside my body.

But my body is remarkable. So is yours.

25 million new cells are produced every second in your body.

There are between 60,000 to 100,000 miles of blood vessels in your body.

Your brain uses 20% of your oxygen and blood supply.

Around 60% of your body is made of water.

Your nose can detect about 1 trillion smells. Personally, I feel this must be smells combined worldwide. My nose knows it can’t smell all those smells.

Hair grows about 6 inches per year. Less if you receive chemotherapy. I seem behind in catching up.

A heart beats more than 3 billion times in an average lifespan.

Your eyes can take in more information than the largest telescope known to man.

The liver supports more than 500 processes in the body. It metabolizes proteins, fats, and carbohydrates. Our liver also activates enzymes and stores vitamins and minerals. It removes toxins from the body’s blood supply.

The average person takes 23,000 breaths a day.

About 70% of your immune system is located in your gut. Getting enough sleep, exercising regularly, and reducing stress can all support the gut microbiome and help a person feel healthier.

People tend to be taller in the morning than in the evening because of cartilage compressing the body during the day.

The average kidney is as big as a cellphone and weighs 4-6 ounces. This really isn’t that remarkable. I find it a super interesting fact.

How fast can a human run?  Unbelievably about 28 mph, a record set by Usain Bolt. Average speed is about 8 mph for a man and 6.5 mph for a woman. I am much slower.

Many cancer havers think our bodies suck because of the cancer and all the side effects that come with it and treatment. It’s an accurate description.

However, not only does my body do all these things, but it does them while living with metastatic cancer. For over nine years, it somehow has continued to function. It has functioned incredibly well at times.

Doesn’t that make it even MORE amazing?

I think of the cancer that lives there and doesn’t belong. My body keeps doing what it needs to do.

I think of the poison that has circulated throughout my body in the form of chemotherapy. I’ve kept functioning.

I think of the shingles, fungal pneumonia, blood infections, low white cell counts, and all the other health problems that have been thrown at me and taken me down a notch or two. Somehow, my body rallied thanks to good medicine, divine intervention, and a huge dose of luck. A couple of these situations could have taken another direction, but I am still here.

At some point, immunotherapy may be one more amazing thing that our bodies can harness.

We all come in different shapes and sizes. I don’t know how humans who have smoked heavily for most of their lives survive. The lives of drug addicts are another mystery to me. People who are morbidly obese or have an eating disorder manage to stay alive. Not everyone in these situations does. They are not healthy. And yet, there is hope for them, just as there is hope for me and others with metastatic cancers.

I am not happy with my body a lot of the time. I rely on it and I’m disappointed when it lets me down. Social plans change because I lack energy. I pass days inside not able to do much of anything. I don’t know how sloths do it. Rather than listing every ailment I suffer, suffice it to be enough to say I just feel sick a lot of the time. Tears let loose when I feel both sick and alone.

And yet I have to cling to my belief my body is amazing.

Walt Whitman wrote in The Body Electric about what he admired in many bodies. He was ahead of his time in his ideas of equality in the human form. He turned physical anatomy into poetry. He revered all bodies. Bodies of different genders and races were interconnected. The body was interconnected with the soul.

I don’t know what Whitman would have thought about cancer and its effects on the body. My guess is he would still find the inner destruction eerily beautiful. Maybe not. It’s a tough idea to embrace and I don’t think I can. He would not find it healthy. Not a body to celebrate. He would still connect it to the soul and person’s spirit.

He would still find the body sacred for all it does.

Why Hair Loss is a Loss

Here I am writing about hair loss . . . again.

I wish I didn’t feel the need. The people I want to reach with this post won’t find it, have an interest in it, or read it. These, however, are the people who have motivated me to write it. Try, try again as the old adage goes.

Hair loss is grieved every single time it happens. It doesn’t matter if it’s happened before. You don’t grieve a loved one or a pet only once. Hair is not human or a beloved pet, but it is a part of you and your identity that is gone.

Hair loss angers me. Every time it happens, I feel the hurt more deeply. Old wounds open. Physical wounds take longer to heal when cancer treatment causes compromised immune systems. Right now, I have a mosquito bite that’s taking its sweet time disappearing. I think it’s as equally true for the emotional wounds we experience. This includes wounds caused by hair loss. They take their sweet time, too.

Enhertu has caused this a dismal fourth time for me. It has thinned enough to see my scalp in places. It isn’t a total loss, but it is more than enough. More than enough to feel the anger inside. I still have hair, but my appearance has changed. I don’t look like myself. I look like an old man. I can just barely make the cut and not wear a wig. I’m not sure if I’d be more comfortable wearing one or not.

As I sit again with this loss, old feelings and new realizations have surfaced.

Old Feelings

Hair loss is utterly unfair.

Unfair sounds like I’m whining. So much in life is unfair. Everything in cancer is unfair. Let me share a little about how I feel this time. I went through something similar in January. It was winter. I wore hats outside and I didn’t socialize indoors. No one really knew what I looked like except for at my oncology appointments. Hair filled in by springtime. New hair is soft like a cloud made of down feathers. Somehow it provided hope in my life. It showed progress. It needed shaping but that wasn’t to be. Along with a switch to a different treatment, that softness began filling my comb each morning almost three weeks to the day of starting a new treatment.

And it just kept coming. Every morning there was more. It showed up on my clothes. Hair covered pillows. I’d find it in my food or in my mouth. It was everywhere except the one place I expected it to be. I was reminded every moment of the day what was happening. To be clear, I don’t need the reminders. I know I have metastatic cancer.

Hair loss is uncomfortable.

Many don’t understand that a person’s scalp hurts when hair falls out. How could they if they haven’t experienced it first-hand? My scalp itches like crazy. I am not supposed to use products to make it feel better because it may aggravate the follicles and cause hair to fall out. Yes, I’m still trying to follow the rules of scalp cooling even though I wonder if there is a point.

I have no control over it.

Loss of control angers me a lot. Losing hair visually mirrors the lack of control with treatments, efficacy, and side effects. I’m still doing PAXMAN scalp cooling as it is to spur faster regrowth even with loss (thinning, shedding). The cap fits me well. I manage the cold. As I said, I follow all the rules. I’ve made a giant effort to hold on to my hair.

And I can’t control it.

I can’t control cancer.

Hair loss is minimized by most.

“It’s just hair.”

“It will grow back.”

“You have some really nice wigs.”

“You have a nicely shaped head.”

“I don’t know why it’s bothering you so this time.”

Again, these comments come from people who don’t understand what it is like to lose hair.

I DON’T KNOW IF I’LL EVER HAVE IT BACK IN A WAY I FIND BEAUTIFUL AGAIN.

Please think about that the next time you feel like cheering me up with a helpful opinion.

It may never grow back and fill in if I am on some hair stealing treatment forever. But I have some really nice wigs. That makes everything better, right? The intent hopefully is to make me feel better. The opposite happens. I feel minimized.

It’s also possible these comments are meant to make the other person feel better. My hair loss is hard for other people apparently.

“I’m so sorry you are going through this again.” That’s what a person can say.

Identity issues accompany hair loss.

I don’t feel WHOLE without my hair. It isn’t about vanity. Something is missing. And it’s obvious. I understand I am more than my hair. Hair is part of a person’s style. You get to choose whether it’s long or short, colored or natural, worn up or down, accessorized or not, or even shaved. Chemo induced hair loss takes away those choices.

My confidence is shot. I don’t even want to go out to my mailbox because I don’t want to be seen, let alone have a conversation with my neighbors about how I’m doing. I recently declined a party invitation that I probably shouldn’t have gone to anyway because I didn’t feel pretty. I am not filling up my largeness and feel so small. The hair thinning has almost stopped. It’s super short with a few thin patches here and there. The damage is done. The anger remains.

New Realizations

Hair loss anger transfers to other losses of mine, and anger I still have about them. My mother suffered as she got worse and worse before she died from metastatic breast cancer. That feeling of helplessness and lack of control is overwhelming. Even though retiring early was best for my health, losing something that I had put over twenty years of energy into felt like a death. I confidently can say I was good at what I did. I touched lives positively and that has vanished. Some friendships have vanished too. I suppose I have changed. There are some mundane topics I simply don’t care about. It hurts to be ignored. Relationships change. I still feel cut off and isolated, forgotten.

Of course, there is anger for all the deaths caused by metastatic cancer and lack of more effective treatments. Over 40,000 men and women in the U.S. will die this year from MBC.

So, it isn’t just hair.

It’s the pain from the loss of my mother.

It’s the loss of my career.

It’s deep grief over the loss of my health.

It’s all of the things in the cancer world that I have no control over.

Hurt, frustration, fear, and sadness all bubble over into anger because cancer deserves to be called out for all it’s done. For me, it’s called out through hair loss.

It’s visual grief for all these other anger sources that have nothing tangible for me to direct the anger toward. My wounds take a long time to heal, if they heal at all.

Time does not heal all wounds.

Hair growth doesn’t either.

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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Three Years Blogging

Another year blogging has come full circle. Number three.

What does it mean?

I had consistency throughout this continued time of COVID. Routines kept me a little saner. Publishing weekly marked time. I stayed productive.

Sharing my experience has been more valuable to me. I’ve touched on topics that I didn’t feel comfortable with a year ago. More cancery things have happened over the past year which aren’t fantastic developments. I’ve written about some of them.

I am more vulnerable than I used to be. Walls have their purposes in terms of safety and protection. I also need people who are supportive and empathetic. Sharing has risks. Am I oversharing? Will my breaking heart be acknowledged or scoffed at? Information can’t be unshared once it’s shared. Not everyone is going to understand me. I won’t understand everyone either. We do our best. Vulnerability can offer safety and protection when you are with your people.

I remember when I first started blogging. I was unsure how my blog would evolve. There was a general direction, but nothing concrete. Slowly, I became more deliberate with ideas and plotting out topics I wanted to cover. Now, I don’t have much of an outline for the coming year as I have had for others. It’s scary for me not to have a plan. I have a handful of drafts waiting for the right moment. I am much more aware of my experiences and wonder in the moment if I need to write about it and coax out something larger. Hopefully, the universe will continue to give me ideas.

I understand cancer is not fun to read about. Many people avoid it because metastatic life is just too depressing. Sickness, loss, sadness, anger, death. Try living with it. Humor is one of my strengths. If I can twist something awful into something that has elements of awfully funny, it helps me cope. I can’t wallow in depression all the time. Hope is another one of my strengths. Weaving humor and hope into my writing works for me because they both are part of my reality as I keep living with metastatic breast cancer.

What are my goals?

Three goals come to mind:

  1. Share more personal experiences and reflections.
  2. Reach more people and educate about MBC. More knowledge can ultimately support more fundraising and more research.
  3. Share my truth.

Have you missed these posts?

It’s in these annual posts where I usually provide links to posts I’ve found meaningful in one way or another from the past year. It’s a little shameless self promotion. Some contain medical updates. I love using metaphors and symbolism to convey ideas. I’ve been somewhat more daring in using humor in my writing. I don’t know whether anyone else finds my attempts as amusing as I do.

If you missed any of these, or would like to reread them again, please click on the provided links. Feel free to share!

Cancer and Treatment Fatigue

The Wishing Tree

Cancer and Unsuitable Clothing

Yoga Pants and Fleece

Cancer Port Problems and Infections

Cancer Hospital Stay

Fearless Girl

Treatment Day Lessons

A Day of Surgery

Cancer and Faith

Cancer Haiku

More Vortex Lessons

Liar, Liar, Pants on Fire

Here are my questions for you:

What topics would you like to read more about in Year 4?

If you use WordPress, what theme do you use for your template and why?

How long have you been blogging? Do you mark a blogging anniversary? How?

Keep finding a way.

Always.

Scanxiety Revisited

There are words universal in meaning in the cancer world. It doesn’t matter if they are spoken by an oncologist or patient. When one person uses them, the other understands. Cancer, treatment, mastectomy, radiation, labs, and scans are all very broad terms, yet they all have a shared understanding between people.

Scanxiety isn’t one of those words. Patients who get scans know this word well. I used it with a treatment nurse back a few months ago and it was unfamiliar to her. I didn’t make too much of it but I began to wonder if this was a term medical professionals didn’t use. Why would they? They are not the ones having scans. But if they don’t understand the word, they also don’t understand how many of us feel.

Scans came up too soon in my life again and I needed my port accessed. My phlebotomist shared with me that she had recently learned about scanxiety. She understood what it meant and how it could affect people. I was pleased someone who was not a patient got it.

I don’t know how many oncologists and treatment nurses are familiar with the term. I’ll do some informal surveys. If there is understanding and empathy around scanxiety, we are more human. We have feelings and emotions. We are not rogue cells, just patients, or subjects.

My scan team has always gotten it. I get the bigger MRI scanner. There’s a washcloth gently covering my eyes so I can’t see how crammed into that tiny space I am. Lavender oil is sprayed on gauze and placed on my chest so it can waft up. Music of my choice is played. It is just like a spa.

Not. But they try.

Scanxiety happened on my very first MRI oh so long ago. A massive dose of claustrophobia was more accurate. The techs could barely get me in the machine. I would have pushed back but my arms were strapped down. The immobility aspect also impacts my claustrophobic feelings. After that, lorazepam became my sometime friend, along with the other provisions with lavender and eye coverings.

Imagining the scanner as a protective cocoon works some of the time. I am safe. For a stretch of time, I am shielded from the rest of the world. It’s a cozy world just for me and no one else. I really don’t have to do anything but lie there and occasionally hold my breath. Do I feel like a butterfly after emerging from my cocoon? No. Maybe I’m one while in the MRI and then turn back into me when I’m rolled out.

Jumping to present day scans, I haven’t felt the scanxiety on the last few. On the last two, I was extremely hopeful for good results. Hope and excitement replaced anxiety. Those scans showed progression. I feel a numbness now about scans. There isn’t worry but there isn’t hope either.

Numbness has its benefits because I’m not feeling. These blasted machines are one more aspect of cancer life that has become routine like office visits and treatments. Yet, it isn’t natural for us not to feel. Being alive means we feel.

One reason why I’ve had scanxiety is due to reactions from the gadolinium based contrast dye that is used in the MRI scans to detect tumors and growth, or regression. Eovist is used for my abdomen MRIs and I’ve never had any problems with it. Multi Hance was used twice for bony pelvis MRIs. It was fine at first. I experienced worsening leg pain and muscular issues about four days afterward both times. I was hospitalized the second time with intense pain. Multi Hance contrast was the only correlation.

A radiologist came in to talk to me at one of my last scans because my story is so atypical. A third contrast agent could be used called Dotarem. The Multi Hance would be preferred for what the scan was looking at today, but they didn’t want to use it. Good news as I wasn’t going to let them use it. Eovist didn’t show these organs well so it wouldn’t do much good to use it. Dotarem was another choice, but I hadn’t had it before and no one knew how I’d react. Scanxiety momentarily returned. Another radiologist was consulted and they recommended Dotarem. I was willing to give it a go. It took 45 minutes for all of this to be decided, but I was pleased that I had a team of people working on this so I stay safe.

I had some leg pain in both legs a couple of days after that wasn’t there before. It could be muscle related, bone pain, or scan related. Eventually, it went away. I would be hesitant to receive Dotarem again.

Revisiting my scanxiety has shown me that people can view the same object very differently. I see the scanner all too emotionally even though I know it’s yielding needed information. I believe my oncologist and radiologist see it as an inanimate object incapable of arousing emotion. It’s a sterile machine in a controlled environment. Therefore the person being placed inside (shoved, crammed, stuffed) is sterile and controlled as well. Results don’t have emotion. Facts are facts and any feelings are nonexistent or unattached.

All this brings me to wonder what causes oncologists anxiety. I would love to find out. Understanding one another better would support better communication. Better communication leads to better patient care.

And if someday patients are offered a massage after a scan to relax and truly make the experience like a spa, I would support that added to my care.

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.