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.