Living with Cancer and Living Unwell

Living with cancer and living well is the theme of this blog. Somewhere along the way I’ve gone from living well, to thinking I’m living well, to realizing I am living unwell. When did this happen? How exactly did I get here? It sucks. Can I get back to living well or is this it?

Quality of life (QOL) has been a phrase I’ve always hated. To me it means treatment is done and it’s an attempt at empathy to say the focus is now on comfort. I know QOL can show up from day one of treatment, however, some of my preconceptions are carved in stone. I am a fan of comfort, but also would like to stay on an effective treatment. Besides, I want both. It needn’t be one or the other.

Enhertu was a relentlessly vicious treatment without an ounce of comfort. Nausea followed me everywhere. Either I couldn’t eat when I wanted or wasn’t hungry. Weight dropped off effortlessly. Most of the time I felt a heavy, flattening fatigue. I slept a lot. Why not, it lessened the nausea a degree.

Here is a plug from my fictitious sponsor Ensure. Ensure is delicious, especially the vanilla. And it gives me some needed nutrition. It comes with an immunity boost, too. I love it!

Other lowlights include a two-month hiatus from taking a walk outside. I finally did my 2 mile loop. I was about ten minutes from home when I realized how hard it was and how much energy I was exerting. I need to build up my stamina. I’ve only done it once or twice since then.

A friend has visited me twice where our visits basically amounted to me lying on the couch like a lazy bulldog while she sat in a chair. I couldn’t even sit up.

Most days my makeup consists of eyebrows and eyeliner on days I want to spruce up. Makeup has always been rather minimal for me. Eyebrows make a huge difference. Lipstick isn’t needed because if I go anywhere, I wear a mask.

These scenarios are examples of my not living well with cancer.

At home I’m largely okay. It’s my safe haven. I can eat and rest when I need. Recently, I traveled to Florida. My plane ride was remarkably normal. Once I met up with friends, I found keeping up with them hard. I couldn’t always eat when I needed to but gradually began to do this to fit my body rather than the late hour. I had to say NO once or twice to activities. I still took my afternoon siestas when possible. The emotional toll of the trip and side effects were almost harder than the physical.

What to do now that I’m home?

I rest when I need to rest.

I nap without apology.

I eat what I can and what tastes good to me.

I cancel plans if too tired.

I know who supports me.

Now, I’m on yet another treatment. I hope it’s kinder to my body and more effective. I’d love to get back to living well.

A History of the Number 13

Superstitious people avoid the number 13.

Floors in tall buildings skip from 12 to 14. People don’t like sitting in the 13th row on airplanes. Friday the 13th is considered an unlucky day. There were 13 people at The Last Supper and many still refuse to have 13 people gathered around a table. I ruled out a home while house hunting because the number 13 appeared in the address. My dad also died on a Friday the 13th. It could have been any day, it just happened to fall on that date. It’s weird that I’m able to rationalize the date he died on but can’t with a house address. Maybe I’m a little superstitious.

Hold on 13 seconds. Let’s take a closer look at the number.

America began with 13 colonies. There were 13 stars on the first flags. Those are not bad things. The number 13 is a beautiful prime number mathematically speaking.

Countries that have a strong western influence believe 13 to be unlucky (like the U.S.). Some countries believe 13 is a lucky number. Italy is one country that considers 13 highly lucky because it’s connected to St. Anthony, the patron saint of finding things. India also considers 13 to be lucky. Whatever you do on the 13th lunar day is meant to give you positive results.

There used to be 13 months on our calendar instead of 12. Back in Pagan times, this related to the 13 moon cycles we have every year. The moon is considered to have powerful feminine energy. It corresponds to menstrual cycles that last 29 days. Women cycle the way the moon does. The number 13 represents a continual cycle of rebirth and death. There is fertility and creation. The moon’s energy is the biggest correlation I found to exalting a woman’s spiritual energy and power.

So far none of this is bad or unlucky.

So how did 13 become unlucky?

Men of yore were the problem. Booooooo men of yore.

When Christianity became popular, civilization became ruled by the patriarchy. They made some big changes affecting women. The goddess Freya (goddess of love, her name closely associated with Friday) was labeled a witch. Ridiculous. Friday the 13th became known as the day when 12 witches met with the Devil. Absolute rubbish. Add that up and you get 13.

Buckle up beacause we’re going back even further to Biblical Times all the way to ancient Israel and the Old Testament. This is a time when women had more power and were revered. Women were active in community life except in the priesthood. Women freely engaged in commerce and real estate. Impressive. Specifically, Miriam (sister of Moses) led the women of Israel in worship. Deborah was a judge and a prophetess as well as a wife and mother. Highly impressive. Abigail is mentioned because she managed a political conflict between King David and her husband. Intelligent wives were considered gifts from God. Wow and wow.

My how times changes in the New Testament. Somewhere men seized the opportunity to suppress women. Women’s lives didn’t extend beyond the family. Women were largely illiterate. Men and women were not seen together. Women did not go out in public often and needed to be accompanied by an enslaved member of the household. Jesus seemed to the exception to this rule. He shared his teachings to anyone who would listen. There are stories of Mary and Martha, Mary Magdalene, and the woman at the well. Still, this was not the norm.

If I am wrong with any of this, enlighten me, please. Biblical study is not a strength.

It is believed that some women in the Middle Ages were scribes.

Men simply did not like women having power. Some still don’t. Look at the inequalities of representation in politics, women in other leadership positions, and in pay. Then there are the labels of being assertive versus being a bitch. Many girls are denied an education in certain countries.

Friday the 13th, or an ordinary 13th in the month, is a perfect day to reflect on who you are, your purpose, and your power. Focus on the powerful feminine within and let it flow out to the universe. Let that creativity and power shine.

There is one day allotted to metastatic breast cancer during October. That sucks. It’s October 13th. How I wish all the awareness would level up and address the urgency of research for MBC. If Metastatic Breast Cancer Day has to be on the 13th, it’s more than okay with me. I acknowledge that men get breast cancer and metastatic breast cancer, but here is my message to women. We women can embrace the power the number 13 holds and do our best to change the world.

There is a chance 13 may become a favorite number of mine. Incidentally, I just began my 13th drug. Lucky 13 it is!

The Invisible Life of Addie LaRue

Plot Summary

Imagine that you were a young woman living some three hundred years ago in France. You had your whole life in front of you when you learned you had to marry a widower with children for the good of the community. You didn’t know this man, nor did you want to marry him. You prayed fervently to the favored gods who answered in the daylight, but you never got a response. All you wanted was more time. Time to discover life. Time to fall in love. Time to explore. The night of the wedding arrives, and you run away into the woods to escape. The dark of night and the trees conceal you.

It’s there that you pray to the gods who answer after dark.

The devil appears and makes a deal with you. Your soul for as much time as you want until you are tired of living. Then he gets your soul.

Addie accepts the deal.

This is the plot of The Invisible Life of Addie LaRue by V. E. Schwab.

Addie discovers she has plenty of time. Time isn’t her problem. People remember her only for the present moment. If she pays for something and the seller turns his back, she is a stranger and accused of stealing. Portraits can’t be painted of her; photos show a blurred face. No one can know her; no one can love her. One night stands are the best she can have because her gentlemen friends have no idea who she is when they wake up next to her in the morning.

Addie is unable to leave a lasting legacy and she cannot have her image captured.

Interesting concept for a book. I found it original and philosophically engaging. The ending surprised me. I confess I didn’t care for the ending. In my opinion, Addie’s confidence in herself is flawed. The devil character is also flawed, but these flaws are necessary for the book to end where and how the author intended.

Legacies

In real life, we all want to leave some positive mark in the world, just like Addie. Each of us needs to know our life mattered.

This is especially true for those of us living with metastatic breast cancer.

A personal legacy is more than money or property passed on to others. How a person is remembered is also based on their words, actions, and how they lived while alive. I want to be remembered as someone who was kind and giving, who enjoyed life and tried to both live fully and do some good. Hopefully, I’ll be thought of favorably. I’ve said before that I try to lead by example. May those examples be positive. I’d love for hearts to smile when a memory passes their way or something I have left behind is used.

What else is my personal legacy?

Over two decades of my official life as a teacher is how I believe I’ve made the biggest difference. A lot of children passed through my life and were a true gift to me in countless ways. Some parents have let me know that I’m the one who excited their child about writing or books. Others have let me know I really took the time to get to know and understand their child. I hope I imparted a love for learning, asking questions, and to think carefully to solve a problem. Every morning my class would hear me greet them, “Good morning my most wonderful students.” I would nickname every class the class of awesomeness. I personally emphasized kindness as part of the unofficial curriculum because our world needs more empathy.

Those are the things I hope I’ve done through teaching.

I’ve lived with cancer tried to do it with grace and strength and now with more authenticity. I have not just sat down waiting for the worst. At times, I haven’t accepted everything that accompanies cancer. I’ve tried to teach here, too. People see how I’m living. Sometimes they see it’s hard. There are also those who see what they want to see.

Fundraising for more research at UW Carbone was a big accomplishment for me. It was an accomplishment for cancer research, too. A lot of people helped make it happen. Awareness was raised that was connected to action. I take pride in what I did. I am honored that I pulled some new people into the fold so they could learn and become part of something bigger.

Of course, there will be monetary, property, and other assets left behind. My plan is for there to be enough money to continue the small scholarship I give to a graduating high school senior who plans to major in education for many years. There are a few other charitable contributions planned, along with meaningful keepsake items that I consider legacy worthy.

My writing is another part of my legacy. I’ve printed out each post so there is a hard copy. I hope they are preserved. It’s an impressive stack if I must say so. Other than the writing itself are the ideas I’ve written. Some have been very cancer driven pieces where I’ve written about my life with cancer. I’ve written about cancer issues I’ve experienced and how my perceptions have evolved. In a lot of my posts, I’ve worn my feelings on my sleeve. 

Intangible things are also part of my legacy. We can never really know the effect we have on others. Our attitudes and outlook on life has invisible ripples to others.

Invisibility

And then there are the times I’ve felt invisible like Addie LaRue. Times when I’ve felt not seen or heard. Moments where I feel forgotten. I often feel inconsequential. How can I possibly contribute to society? I’m sick, right? The losses I’ve experienced take away my visibility (career, friendships, health, failed treatments, loss of mobility, loss of favorite activities). Each loss adds a layer of invisibility.

But I am not Addie LaRue.

I am Kristie Konsoer.

I have made contributions to society. I have good family and friends and enjoy time with them. I am not invisible. I am seen.

5 Lessons About Vulnerability and Cancer

Vulnerability is scary. It exposes emotions and opens up our souls to possible hurt and rejection. Hurt and rejection sting.

What then, is the point of being vulnerable?

It can lead to comfort and acceptance. Other people have felt what I feel. Others have thought maybe it was just them until I shared. Or vice versa. It involves trust, empathy, and meaningful connections to others.

A lot of vulnerability comes with a cancer diagnosis. There are many exposed emotions such as worry, fear, sadness, anger, stress, anxiety, and guilt. Layer these with physical symptoms like nausea, diarrhea, constipation, headache, fatigue, bone and muscle pain, and other side effects. Combine these altogether and you get the instability and loss of control that make vulnerability what it is.

No one wants to wake up in the morning and strive to make themselves as vulnerable as possible in every situation throughout the day. Most of our day to day activities fall within our comfort zones. People tend to thrive and feel happy when they feel safe and secure. This holds true to learning, performance in the workplace, and personal relationships.

Yet it’s in those personal relationships where we need to let others in. Not everyone, but those few who offer that trust, empathy, and connection that lovingly support the vulnerable. It’s a two-way street and we can let those in who are vulnerable with us.

What does Brené Brown have to say about vulnerability?

“We can exercise the vulnerability muscle that allows us to soften and stay open rather than attack and defend. This means getting comfortable with vulnerability.”

Brené Brown

“The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it is our most accurate measure of courage.” 

Brené Brown

How can this be applied to my life? I have five main take-aways:

Lean in.

One of my friends says to lean in. She and others are there to support me. They will sit with me in my pain as I will with theirs. I have had more than enough time to get vulnerable with cancer, although I can’t say I will ever be comfortable with it. I can discuss it somewhat more openly and know what my feelings mean.

Leaning in requires openness and a degree of courage. The outcome of doing so is usually unknown. Life has no guarantees. Unfortunately, some may not receive the authenticity and vulnerability we offer when we lean in. We try again, perhaps a little more carefully, but still courageously.

Illness makes us vulnerable.

Illness unleashes the uncertainty, risk, and emotional exposure that are at the heart of vulnerability. There have been so many ups and downs with metastatic breast cancer. Countless face offs with fear. Innumerable times of sadness, loneliness, and disappointment.

I have turned from a confident woman into someone much more insecure. There is hesitancy in attending social events because of anxiety about looking like a sick person. Sometimes I don’t even want to walk out to my mailbox and be seen. Walls are so much easier to leave up in contrast to feeling exposed.

When I don’t feel well, my defenses are down. Hurt, self-protection, and privacy are why I have defenses. Defenses like lying to questions about how I’m doing. Defenses like withdrawing from others so I don’t have to talk about cancer and me. Defenses like curling up in my safe haven at home.

What I call the Fatigue Factor impacts my vulnerability. Some days when fatigue prevents me from even smiling because I have no energy. Fatigue, any side effect from treatment, makes me vulnerable, but I don’t think in a good way. I can’t do much to reject unwanted gestures, nor could I accept wanted ones.

I need to trust more.

Cancer has caused distrust of my body, myself, others, and medicine.

I am not alone.

Yet, my body is holding on. Trusting myself is a work in process. There are people in my life whom I can trust. I can think through information and my emotions in an analytical way. I gain insight when I write about my feelings, often ending up in a different place than I thought I’d be. Talking through things is incredibly helpful. I was feeling particularly low one day and messaged a friend. We chatted. When I spoke the words I was feeling aloud, I realized I was over reacting. What I worried about was in fact a very small deal. Another day, I stopped at a friend’s house for an outdoor visit and had a breakthrough on why I didn’t feel more anger about no longer teaching. Gratitude is my over-powering feeling about no longer teaching, a little sadness, but not really anger. It’s certainly in my best interest to trust medicine that has stood up to scientific tests and rigor.

I joined a support group when initially diagnosed. It was not a group for stage IV breast cancer. The director at Gilda’s Club told me they were a group of little old ladies that ran around everywhere together. I was 41 years young. Age doesn’t define friendship, but I didn’t think I’d fit. The group met during the day and I was still teaching. I joined a general breast cancer support group and didn’t share I was metastatic. I didn’t feel I clicked with this group either. Women monopolized the time with issues that didn’t seem relevant. Eventually, I stopped going.

I am part of a healing circle now that meets on Zoom. Our small group of six all have metastatic breast cancer. Here are women who have become friends. We have a bond and connection that is tight because we have been vulnerable with one another. What we share with one another has been one my biggest teachers that I am not alone.

I can be vulnerable and still hold boundaries.

Being vulnerable does not mean all boundaries are tossed out the window. Everything isn’t to be shared with everyone. Everything isn’t even to be share with a select few. I have realized that opening myself up more has allowed myself to be stepped upon with an understanding that it is okay because of what the other person needs. Old wounds.

No is a great word to hold boundaries. I don’t need to explain.

Another boundary that rests with me is the decision on what gets shared and with whom.

I can put limits on how vulnerable I make myself. If something is too painful for me to speak aloud, that is okay.

Boundaries make being open with uncertainty safer.

There is space in vulnerability for many feelings.

Let’s look back at the definition of vulnerability: uncertainty, risk, and emotional exposure. Space can be held for whatever the softness opens us up to experience. We can feel grief, growth, hope, and even happiness. I feel them all.

I am willing to show up and be seen.

Who’s with me?

Morphing

I’m a little wren

Nesting in the pine

And singing to be heard

Loudly and sure

Because I have a song to share.

I’m a white rose

Opening in the garden

With petals etched in pink

At the edges

Because my time is now.

I’m a cloud

Floating across the sky

And ever changing

Shape and form

Because that’s what clouds do.

I’m a book

Scrawling with thousands of words

Filled with originality

One you can’t put down

Because it is unexpected.

I’m invisible

Yearning to be seen

Screaming to be heard

Ignored by so many

Because I am incurable.

I’m a candle

Lighting the dark

And giving hope

Wherever it’s needed

Because candles illuminate life.

I’m a butterfly

Fluttering in the breeze

Lighting on flower

After flower

Because I make the world beautiful.

I’m a song

Humming my melody

With a driving rhythm

And I listen to the spaces between the notes

Because they are important to the song.

I’m the sky

Seeing everything below

No matter how I look

Sun or rain, day or night

Because I am always there.

I’m a bee

Working to keep the

Entire world from collapse

With little thanks or understanding

Because I sometimes sting.

I’m a unicorn

Staying as safe as I can

And as real as can be

While I travel with others like me

Because unicorns do exist.

I am a human

With cancer

Wishing to morph

Into someone without cancer

Because I want to be healthy again.

These are the things I am

As I morph from one to another

But I also feel like a puddle of tears

Or a bundle of nerves

Firing uncontrollably

As demon cancer cells

Multiply inside a body trying to stay alive. 

How am I feeling?

I feel misunderstood

And sometimes voiceless

Silenced by a need to conceal

And wear a disguise of a smile.

Look into my eyes.

My eyes don’t lie.

Eyes are windows

Into our souls.

My soul either is a light

Or it is an empty hole of longing.

I want us all to be lights.

What do you see?

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.