To Be An Untamed Cheetah

Glennon Doyle thinks about life differently from the mainstream population. I think I understand one or two basic ideas about life. Then I read her book Untamed, and she turned them upside down. 

Recent books I’ve read have been a topic of posts lately. This book reminded me that being untamed, even a little untamed, is the way we are supposed to be all along. The chapters are often short segments of storytelling where she makes her point through metaphor. Her style speaks to me as I often use narrative and metaphors to craft my writing. She gently encourages and inspires as she writes, sharing her story and thoughts with readers. There is a lot that resonated with me in Untamed.

One of those ideas is how we become adults and take our chosen place in society. It’s a chosen place we’ve dreamed of, worked hard for, and understand what our role is to be. Glennon draws a parallel between this life and a cheetah at a zoo who has been trained and tamed to mimic a dog rather than act like the cheetah it is.

She defines being tamed as meaning you have made yourself fit. We have been conditioned by the people and life around us. We have learned how we are supposed to act and feel rather than be act like our cheetah selves.

I took my place as a teacher and understood that I was seen as a teacher outside of the classroom as well as in it. Not being wild and crazy, I fit the persona well. Nurturing, well-liked, respected, and all the other positive qualities you would want to assign to a teacher. Underneath all that, there was also an expectation that you would not openly challenge authority too much. It contradicted teaching children to question and think critically. I didn’t challenge anything too much until I was diagnosed with metastatic cancer. It became clearer over time that I didn’t need to (and couldn’t) make myself fit. I do believe age and growing older also causes changes in our confidence and how we see life. I was able to behave more like a cheetah.

Women behave more like cheetahs as we age. Society wants to call us cougars. That label portrays women only one way. No, not sorry – we’re cheetahs. Get out of the way.

Women especially have been tamed to fulfill certain norms that are outdated and antiquated. We take care of others first. We may not reach high enough. We accept put downs from one another. About a month ago I listened quietly as women commented on young women who would never marry or have children because of metastatic cancer. Well, I’m no spring chicken, but there I was with no hubby and no children. The comment wasn’t meant to be hurtful or even apply to me, but that tamed part of me silently took it in rather than roaring. I’m tamed.

She goes even farther with a personal story to emphasize how unhealthy it is deny yourself permission to live how you want. Glennon described the time when she had neurological Lyme disease and was sick for two years. She couldn’t function and spent the majority of those two years in bed or swallowing pills. She felt better when she visited a friend living in Florida and it was then she understood she needed to stay there. Not only did she need to stay there, she wanted to stay there because she always had loved the beach.

We shouldn’t need a brush with death to learn how to live.

We always should honor our true selves.

In many ways, living with metastatic breast cancer has given me that permission to live more truthfully. I won’t say it’s allowed me to live as I want because I don’t want to live with all the suffering and uncertainty that accompanies cancer. I wake when I’m rested most mornings rather than rolling out in the dark to an alarm that sounds way too early. I don’t put in extra hours at a job I love just to feel like I’m barely keeping up. I don’t put myself last. Instead, I have time for me. I can take chances to do things that before cancer I would never have dared. When it comes down to it – no one cares and no one stops me.

We all need to live how we want.

Glennon Doyle wants us to shake things up a bit. Maybe a lot. She writes a lot about learning to be brave and become true to yourself. Our purpose is to live authentically and fully.

Here are a few ways I’ve seen myself becoming untamed:

• I’m an active and vocal participant in my medical care.

• I say NO more often.

• I have control over my own show and I like it. I can get a lot done when I can envision a goal and fully pursue it.

• I ask a lot more questions.

• I express my opinions more often.

I haven’t been to a zoo in a few years. The closest zoo to me doesn’t have a cheetah exhibit. Of course, all the animals are confined. They are there so humans can see wild animals. None of them behave as they should. They are tamed in the Glennon Doyle sense of the word.

Cheetahs are symbols of patience and intensity. As a spirit animal, they remind us to prioritize and set goals. I want to let my inner cheetah run wild. I want to move stealthily and quietly to get what I want.

Ah, to be a cheetah is to live more untamed. I will be more unleashed, uncaged, and even more wonderful than I already am.

Love Letter to My Future Self

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

I was proactive.

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

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

Dearest Kristie,

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

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

Life is good.

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

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

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

You look outstanding!

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

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

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

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

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

Much love,

Kristie xxx

A favorite photo from spring

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

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

Always.

Largeness

The Book

I highly recommend The Book of Longings by Sue Monk Kidd. It is a fictitious novel set in biblical times about Ana, the wife of Jesus. She is the main character; Jesus is secondary. It does contain historical content, but it isn’t preachy. It focuses on Ana and women’s power, or lack thereof, during this time. I chose it for book club and our discussion was layered and went much longer than our usual time.

Largeness is one of the book’s themes. The reader sees this in the opening pages when Ana reads a prayer she wrote inside her incantation bowl:

 “Bless the largeness inside me, no matter how I fear it. . . . When I am dust, sing these words over my bones: she was a voice.”

Ana was privileged to be a woman who was educated and knew how to read and write. When her marriage was arranged to an older man whom she didn’t love, she was told all her scrolls would be destroyed and she wouldn’t be allowed to write once married. She hid most of her scrolls, leaving lesser ones to be destroyed. I loved her daring spirit. Ana spoke back to men and even argued with them. Against all laws and expectations, Ana took papyrus from someone who betrayed Herod Antipas (also an enemy of hers) and she declared it a parting gift bestowed on her for her departure. The others called it stealing. She caused trouble often. Her intelligence and the fact that she was always underestimated saved her often.

Many attempts were made to silence Ana because she was a woman in a time where women had no power. She lived with great passion during a time, place, and culture where females were silenced. Jesus recognized that Ana was an equal. He didn’t try to silence her.

Way to go, Jesus.

Ana and Jesus separated about halfway through the book while still being married and devoted to the other. Jesus planned to focus on his calling and ministry. Ana needed to flee to Egypt because her actions made it unsafe for her to stay in Galilee. When they were alone together on the morning Ana departed, Jesus looked deep inside her and said, “I bless the largeness in you, Ana.”

She responded, “And I bless yours.” 

This is a simple but remarkable exchange between the two characters. If you’re reading in a hurry, you’re likely to miss it. Where it seems natural for Jesus to recognize the largeness in Ana and know that she has to go boldly to Egypt, Ana’s reply is stunning. Her largeness, her voice, to offer a blessing back to Jesus as an equal, speaks to her confidence and how she sees herself in the world.

Ana’s largeness takes hold in powerful ways in Egypt where her intelligence, abilities, and courage emerge even more. Her largeness and voice shine the most in this part. I fear I have already given away too much, so I will stop and urge you to read the book on your own.

My Own Largeness

The Book of Longings returns to the idea of the largeness within people. Questions in one of the reading guides include: How do you conceive of your own largeness? What inhibits it? Do you agree with Yaltha (another strong woman character) that passion to bring forth largeness is more important than the largeness itself?

First of all, yes, I agree that a person needs passion in today’s world to bring forth their largeness. Finding one’s authentic voice and using it is how I define largeness. Being heard and being a voice challenge each of us. Whether we teach, write, create, solve, research, parent, or something else, there are a lot of voices out there. As a teacher, presenting reading objectives involved daily passion and larger than life moments where backing up ideas about characters with evidence was the most important thing at that moment in time. When I switched hats to writing teacher, including details, actions, and dialogue became the large idea I made ten times bigger to be effective. Number sense and understanding the beautifully logical world of math was a passion with math. Passion and largeness overlap together.

Thinking about my largeness as a teacher holds some contradictions. There was some stifling by school policy and things like class size, standards, curriculum, assessing children, and evaluation of teachers. There were only so many minutes in a day but the expectation that everything got done was constant. I also look back and see my classroom as a home of learning and fun. I had thousands of books. Read aloud was my favorite time of day where we could just relax. Each child brought something special and made our collective whole magical. There was an intangible largeness that I brought there every day. Beliefs about learning and learners, the relationships with children, and what I transformed the classroom into each day are large ideas in action. Small accomplishments became large. Work, perseverance, revising, continuing to use your voice, teaching and learning with purpose, knowing your why, and having fun all contribute to the largeness I remember teaching.

Those teaching days are gone. Where does largeness live for me now? Over the last few years I’ve really come to not care what others think and I might as well do what I want and what I feel needs doing. I don’t have to explain as much to others. There were rules and expectations that I was to observe as an educator and in my family. I’m far from revolutionary or extreme, but I am much more of a badass now that there is freedom from regulations I don’t have to follow. I can ask a school board member what exactly he means by “restoring order” in the classroom because his perception of order may be different from one that has a little disorder but lots of learning happening. I can be as blunt as I need to be when at an office visit or treatment because what’s happening affects my body. Largeness now leaves less rules for me follow.

Rules can prevent largeness.

Cancer Connection

Where is my largeness in the cancer world? In my own way, I use my voice to make a difference for others, to bring awareness, and a bit of light to the world. It’s small, but I still reach people. I blog, I have fundraised, and I’m a patient advocate where I receive cancer treatment. I use social media to continue to grow my largeness. I feel larger with the friends I have made in that world. We share our largeness and our voices for a common cause.

How has cancer tried to silence me? Even though I have largeness, I often still feel invisible with metastatic breast cancer. The multiple ads on TV show thrivers who look amazingly healthy. I’m paler than usual and have lost my glow. I look and feel old. I know MBC isn’t always visible on the outside. But I also know there are a lot of ways we are hidden from the public eye. I’m starting to mull over an idea for October largeness where those with MBC post brave photos where we clearly are not at our finest as part of a reality campaign to raise money for research for metastatic breast cancer. Stage IV always needs more. It may not be pretty, but it would be loud and LARGE.

Maybe I should get a billboard. That sure would be loud and large.

For myself, as I read thoughts from those living with cancer, there often is a common thread from some that they better get out and do something worthy (large) while they have the chance. I have stepped boldly into new roles with my writing efforts, sharing my photography, and through fundraising and patient advocacy. I’m always working to improve my fitness. I’ll continue those and whatever else presents itself along the way. Like Ana, we all want to have been a voice and be heard long after we’re gone. For me, I think my words, my writing, have the best likelihood of my voice being heard and staying large.

In yoga, the thriver pose makes yourself large. How fitting. Your arms are stretched out to the side and lifted above your head to the sky. You literally make yourself as large as you can and feel your power while you breathe. It is good to take up more space.

I will take up as much space as I can. I will use my voice.

Write What You Know

To write what you know is one of the biggest nuggets of writing advice that comes from authors. It doesn’t matter if the writer is published or unpublished, well-known or obscure, or a beginner or someone highly established. Writing what you know allows the writer to draw upon personal events where details can appear more naturally and make the writing feel more authentic. This advice applies to so much more than just events. We feel a wide spectrum of emotions ranging from euphoric to gut wrenching as we live through these events. Writers know emotions and must write those emotions. I believe this is why we get hooked with a story we feel has nothing to do with our lives. It isn’t the mob lifestyle or unspeakable events from Nazi Germany during WWII that pulls readers into a story. We identify with characters who feel what we feel.

As a teacher teaching second graders, this often meant I read lots of informative pieces on playing with pets, narratives of a summer trip where a flight was as exciting as the destination, and realistic fiction stories about camping, sports, or school. Most kids have fairly similar experiences coming from the same geographic area and being so young. The joy of writing, experiencing success, and becoming more independent writers were always wide-ranging goals in any piece. I wanted kids to write what they knew. Writing about what they didn’t know was a blank page.

It’s the same with me.

As a reader, I look to sources who are experts. Mitch Albom. Sue Monk Kidd. Brené Brown. I go back to favorite authors as well as whomever I’m reading at the moment to reread passages and examine what made them effective. I read like a writer. I love words and storytelling. Even when reading fiction, I understand authors research their topics to make stories credible and realistic. Many factors make writing come alive.

I ask myself, as a writer, what do I know?

Cancer

Unfortunately, I know too much.

My mother had uterine cancer that was successfully removed through surgery. It gave me an early example that disease would always be caught early and without much inconvenience. I recall a couple of years later telling friends she had been diagnosed with breast cancer and that it was going to be harder but that she’d be okay. It was harder. Mom had a partial mastectomy followed by chemotherapy and radiation. I became an expert on her health and breast cancer knowledge. Information was power and I wanted to understand all of it. All was good for years. Golden years.

And then it wasn’t. She wasn’t.

Looking back, I’m not sure if she cared for all my pearls of wisdom that I’d learned. I likely was annoying. It’s very different when the shoe is on the other foot and you have been diagnosed rather than a family member. I want my information but have a bit of an inner attitude when someone who isn’t an authority drops false information at my feet.

My metastatic breast cancer diagnosis came about a month or two later on the heels of hers.

There is a lot I could write about from my experiences with cancer with my mom and from my own. I haven’t mined memories of it with my mom because of the pain. I don’t feel as much pain with my own. I’ve found it to be cathartic and a home to give voice to the pain and whatever other truths need speaking.

Others write from a very factual perspective of their experience. Expert background experience support their writing. They write from legal, medical, patient experience, and personal experience perspectives. Others share raw emotions and reactions to what’s happening in their lives through poems and deeply personal reflections. I tend to write about cancer from the lens of what happens to me and my thoughts about it. Factual information gets sprinkled here and there as it impacts my chosen subject or theme. We’re all invited to sit a while with these perspectives and stories of shared experiences.

Write what you know. I know cancer.

Feelings

Emotions were mentioned at the top of the piece. We all experience universal feelings. Fear. Despair. Loneliness. Humor. Love. Hope. Spirit. A small event of forgetting music at a piano recital can pack some huge emotions of not feeling supported, being humiliated, and hearing your parents lie to you about your achievement. It’s still a tough memory for me. This story can be more powerful than a story that retells a death in the family that is void of emotions. Emotions and feelings spill over in writing because the goal is for someone else to understand and connect with what was written. When I think of a common quality that’s at the core of favorite books, or dare I say even things I write, is the desire to be understood. We crave that as writers and readers.

Feelings are our emotional truths.

Stories of good times on Grandma’s farm help me preserve memories that I want to remember. Her home is a strong example of how emotions create the writing. I took a photo of her farm from out in the field one winter. My grandma, dad, and mom were all warm inside visiting after our Sunday meal. I wrote about how the people I loved were in the photo even though I couldn’t see them as part of an assignment in college. Later, I wrote a poem about it. Years later, this house is in disarray. Raccoons have taken over and hauntingly walk on keys of the damaged piano in the night. A cousin’s son and his wife moved onto the property into the more modern home across the drive when they married. They see the old house as dilapidated and scary (I do too) but more of my emotions are grounded in Sunday visits, time with Grandma, and playing with the farm cats. I sent my cousin’s son a copy of the poem so he could see the abandoned house as a home for a few brief moments.

Write what you know. I know my feelings.

Experiences

Small experiences can have big impacts. I remember winning a cake at a cake walk when I was about six and it was the first thing I ever won. It was a carrot cake with nuts. I was allergic and unable to eat it, but I had won something and felt special. Memories playing at the playground across the street fill many childhood memories. Camping in Girl Scouts. Family vacations. Being bullied. Never knowing if you really fit in. I remember holding my dad’s hand in the ICU and watching it shake trying to find mine after one of his heart surgeries. I have entertaining experiences throwing dinner parties, both fun and disastrous. News of a good scan. Not so good news. There are arguments and celebrations. Little events make a life. Although short, this brief list weaves together experiences with emotions. Most are waiting to be written.

Hope isn’t an experience as much as it is a belief. This belief has been a driving force in some of my experiences and many of my thoughts. Links are provided if you’d like to go back and read past posts. Hope is what I know.

Hope, Belief, and a Monthly Planner

Doom Dibbling or Hope Harvesting

Write what you know. I know my experiences.

Teaching

I know a few things about teaching after twenty-three years in the classroom. Best practices in curriculum and child development have come and gone. Co-workers and students have provided so many stories that you can’t make up. Classic one liners that still make me laugh. One year each child reminded me of a different breed of dog. I loved that class. One year there was a child who had some obvious unidentified emotional issues but who could work quite successfully under his desk. I loved that child as challenging as he was. Another year there was another child who inched her way closer and closer to the door and thought she was hiding. She was a character. I remember mistakes I’ve made like working with glitter as part of projects. I could write about lockdown drills. There is endless material. I can remember where I stood when I learned my dad had died. I know where I was when I got the call that my mom had taken a turn and the end was near. I can bring up the moment where a friend told me she was pregnant. The day I shared with my students I had cancer and couldn’t be with them is still fresh. So many nonteaching things happen within the walls of a school. The things we’d hear if those walls could talk.

I was happy teaching. At times I was frustrated. I felt successful, secure, and safe. Teaching was home.

Write what you know. I know teaching.

I’m not the only one who knows these things.

What do you know?

Cancer Haiku

Haiku is a form of Japanese poetry that usually is about nature themes. It’s written in three lines of five, seven, and five syllables. I find it a beautiful way to create images and stir feelings. Writing it has made me a stronger writer because I must be concise with a finite set of syllables. I often find myself walking around thinking in syllables. I have broadened the scope of my themes when I write haiku to take on personal experiences as I live with metastatic cancer. I offer glimpses into my heart with a bit of that imagery and feeling I’m hoping comes across in seventeen syllables. The more I write, I better I get. I hope you connect with them in your own way.

I answered the phone

the voice said you have cancer

and everything changed

but you look just fine

you can’t be metastatic

you do not act sick

tears on my pillow

tears and sobs in the shower

tears behind a smile

chemo in my veins

chasing after cancer cells

killing good and bad

you’ve stolen my hair

my eyes have a lifeless look

I’m pale, weak, and scared

scars on the outside

reflect little of being

scarred and scared inside

we can land on Mars

and urgently make vaccines

we can’t cure cancer

who is this person

who stares back in the mirror

she looks familiar

the dreaded scanner

I lie inside motionless

hoping for good news

nervous in a gown

waiting for fate to unfold

in the next minutes

we need more research

and more effective treatments

to save those we love

cancer spread elsewhere

is known as metastatic

and cannot be cured

wicked cancer cells

how did this happen to me

how is this my life

cancer side effects

suck everything out quickly

that helps us feel well

sleepless once again

I lie awake unable

to dream something else

positive thinking

balances hope and science

when you have cancer

spring turns to summer

my next season is unknown

I live in the now

petals on a rose

lovely and soft and alive

how long will you stay

bad thoughts creep inside

my heart about when and how

that I push away

dying is rebirth

to where our souls remember

and feel love and light

The “I” in Patient

We all know there is no I in TEAM.

But there is an I in PATIENT.

I am an integral part of my care team.

I am the reason for my team.

I am the team member who is affected by decisions.

I care the most about those decisions.

I understand my health well.

I know how I feel.

I track my side effects.

I notice minute changes in my body and how I feel.

I take charge of my health.

I don’t accept no easily.

I believe in science and in myself.

I should not be discounted.

I won’t stay in my lane.

I participate in my care (which is my lane by the way).

I advocate for my needs.

I ask questions.

I don’t just have cancer.

I have feelings.

I use my voice.

I get tired from having to push so darn hard to be seen and heard. My biggest annoyance lately has been feeling like my voice doesn’t matter because I am the patient. There have been a couple of recent instances where I’ve literally had to say something along the lines that I could be consulted and believed. I had helpful and needed information. It’s hard for me not to let anger filter through some responses. Information I bring to a conversation isn’t validated until it can be cross-checked with my oncologist or my record. Some information isn’t entirely correct in my record. It needed to be written a certain way as it was the lesser of two evils. I understand facts are not up to interpretation, but not all of them are black and white. Facts have circumstances. Specifically, facts can change in terms of what I was given in initial scans versus what I need currently.

It took me about 5 phone calls over 3 days to get my last set of scans scheduled. I’ll try to be concise. I had heard nothing after a week. I found that unacceptable and began going through the proper channels so I could get them on the calendar. A recent conference call with a scheduIer in imaging and scheduler from my oncologist’s office upset me. I began to lose it after about twenty minutes of the run around and some misinformation in the initial orders (a case of botched facts). I’ve paraphrased two especially bothersome exchanges.

Imaging Scheduler: It says here you need a premed.

Me: No, I usually don’t take anything.

Imaging Scheduler: If the oncologist believes you need medication for the scan, they will order it.

Me: I don’t need anything because I don’t get the additional contrast dye. You might want to ask me as I’m the patient being kicked around. I know what I need. I won’t consent to take something that I don’t need.

The conversation kept deteriorating. I was close to tears and knew I was getting stuck with the short end of the stick. We all knew I needed accommodations and yet I felt I was being blamed because slots were full. I had been trying for days to make progress with getting these tests scheduled.

Oncology Scheduler: We can proceed with your next treatment only if you can get your scans before your oncology and treatment visit. Otherwise your treatment will need to be pushed to the next week.

Me: Well, that’s a real shitty deal for me, pardon my language. My treatment is a pretty big deal. I need it on time. I’m being treated like I’m not even human. Now, I can come in on two separate days so I can fit these requirements because several people have dropped the ball in getting the scans to happen.

My frustrations were understood.

Right.

We scheduled scans at inconvenient times on two separate days because I had little choice and needed to set definite dates and times. I would do what I had to do. Always do. Always will. The imaging scheduler was going to keep working and see if she could get them on the same date. I wasn’t going to hold my breath. I would place a call to the patient relations department and let them know that known scans needed to be scheduled as soon as possible after an oncology visit so the patient isn’t left burdened for no valid reason. They could do better. I also wanted to suggest beginning the scheduling process sooner for myself if I needed accommodations. You can bet I’ll be bringing this up sooner than is needed so the process is easier for me next time.

My phone rang the next morning. It was the imaging scheduler who had found a way to get my appointments to work with the accommodations I needed, at my preferred location, and on a date that didn’t interfere with my treatment. I scarcely believed it! I felt much better about the fit I pitched a day earlier. I thanked her repeatedly and let her know how much it meant to me to have her work so diligently on my behalf. She made my day and I told her I hoped she would treat herself to something enjoyable, whatever that might be.

Sometimes I feel very Jekyll and Hyde. I am really quite delightful when my buttons aren’t being pushed. I would rather work toward solutions amenably. Life is smoother for everyone that way. However, I can unleash my fury quickly when I’ve had enough. I had had enough. I feel like I’m like my own attack dog when this happens. I am all I have.

Then there are the times I feel like I’m not an agreeable patient. I wouldn’t describe myself as noncompliant, maybe some medical professionals would. Too bad. I ask questions and advocate for what I need. Cancer has taught me a lot.

I am a patient.

Listen to me.

Include me.

Value me.

More Thoughts on Identity

There are plenty of labels and titles used to assign and confuse our sense of identity. Male, female, husband, wife, widow, single, married, father, mother, childless, son, daughter, brother, sister, only child, and friend. Adjectives also serve this purpose. Beautiful, plain, ugly, happy, sad, funny, depressed, selfish, and giving. Jobs and careers do the same. Perceptions of illness and wellness are also part of the picture. I live with words like patient, survivor, thriver, lifer, metavivor, warrior, and numerous others.

Interests and beliefs both differentiate the narrow scope of labels and titles. Here true identity may lie if you are lucky enough to truly “Know Thyself.” Learning and teaching are two of my core beliefs and huge interest areas. I love reading, writing, and thinking. My interests branch out to other areas. I feel good when I exercise. Listening to Bon Jovi makes me feel just as good as John Denver folk songs. I am interested in nature photography and hiking outdoors. I love time with my friends and family. A good chocolate dessert or caramel is savored.

Identity must be a combination of all these things combined, each like a piece in a jigsaw puzzle. A puzzle really takes on many aspects of the self. Neither is complete without all the pieces. Woe to the puzzle doer to near the end of a puzzle and realize a piece is missing. You know what that piece is and how it will complete the picture, but it still isn’t the same. It’s almost complete, or as complete as it can be, but it just isn’t the same as irrefutably complete, done, and finished. It is very troubling when a person’s identity is missing a piece or two from the puzzle. It may seem obvious what piece is needed to go into the empty space, but everyone still wants to find it to finish the puzzle and make it whole before moving on to the next puzzle.

Maybe we even have a tough time seeing our true selves. It all gets very muddled. Someone else cannot tell you who you are. Identity, strength, and happiness are all inside jobs. It’s very challenging because so many outside factors influence who we are. Those labels, socioeconomic status, who we know, where we live, and even ancestry all are puzzle pieces.

It’s with friends that none of these other definers really matter. People do not say so and so is my friend because they were really good at self-care, took remarkable pictures, or could fix a flat tire. My friends are my friends because of a shared past and the similar interests and values we still share today and hopefully will share well into our futures. We laugh, we help one another, and we are just there to support one another. These are the qualities that transcend all the names, titles, adjectives, actions, and changes over time. Your true inner qualities always remain.

I can’t fix a flat. I hope that admission hasn’t cost me any friendships.

Back to the question, Who AM I? The AM changes over time. Just as the land changes over time, so do we. The Grand Canyon in its infancy was not a canyon at all but instead the great Colorado River flowing southward through Arizona. It is really an awesome feat in physiology how humans change from infants, to children, then young adults, and then through so many different stages of adulthood. And that’s only on the outside.

Thoughts, words, actions, core beliefs, and values all converge together in the I AM. I AM giving. I AM a reader, writer, and thinker. I AM a storyteller. I AM someone who enjoys the outdoors. I AM someone who enjoys the indoors, too. I AM someone who likes to laugh.

I AM loved.

I AM me.

I wrote an I AM poem back in 2012 and posted it back in May, Ideas definitely revolve around identity. You can read it here.

Living as someone with metastatic breast cancer is only one way I continue to define myself, but I don’t want that to be the first thing that people notice about me. An illness shouldn’t define anyone. Others can’t define you in terms of an illness. Unfortunately, illness seems to be the domino poised to cause others to fall.

Figuring out who I am as I navigate identity amidst medical treatments and side effects seems like a never-ending onion where a new layer is continually being peeled back and makes me cry. What doesn’t change is that I am always whole. What if instead of an onion being peeled, I was a tree that kept adding ring after ring with each passing year that told my story? I see a strong mighty oak firmly rooted in the earth that is solid and has witnessed much. Older but wiser. Unflappable. Still there. Bigger. Changes are inevitable, but I choose to see myself as whole and complete with whatever changes that life brings my identity.

There is a Quaker wisdom to “Let your life speak.” It means to let your highest truths and values guide your choices. Who I am lies in my truths and choices that begin as thoughts and materialize as actions. Love, joy, kindness, and making a difference is who I am, and who I will always be. My life will continue to speak.

Cancer – A Master Thief

The Wizard of Oz is my favorite movie of all time. Dorothy believes the world that is somewhere over the rainbow is such a happy place where all is perfect and well. There are no worries or fears. Troubles melt like lemon drops. The song says so. Everyone’s dreams come true and undoubtedly you are who you see yourself as being. Back on solid ground, life is not the same. Birds fly over the rainbow and we long for the ability to fly. The song says that, too. Dorothy discovers that over the rainbow isn’t all she thought it would be, but she learns a lot while she is there.

Oz certainly isn’t Kansas anymore. All isn’t perfect there any more than it is in our realities. Once someone hears the word cancer, Kansas and anywhere else has changed forever. The twister destroys and maims like cancer. It doesn’t care who you are and doesn’t explain why one home is left unscathed and another is completely gone. Oddly enough though, it’s the twister that is the impetus for change and transformation. It took her to the beginning of the yellow brick road. It made it possible for Dorothy to discover her truth and strength.

The tornado is a defining moment where everything changes.

Cancer is a defining moment.

While Dorothy is in Oz, she learns that she was whole and loved in Kansas. I can identify with Dorothy. I think we all can.

Feeling whole is harder when life presents so many lessons in loss.

The grass is always greener. What I have now that I think sucks will look good next to something that sucks even more later.

Traits of loyalty and determination have been attributed to Dorothy. These are two very fine qualities. She was loyal to her friends and they were to her. She was determined to find her way home in a strange land.

Dorothy returns home as we all do.

The movie is filled with aspects of identity spread across all the characters. Dorothy’s friends in Oz believe they lack qualities that all along they have. The Scarecrow has a brain and has both intelligence and common sense. The Tin Man is caring and compassionate. The Cowardly Lion has courage and might. We are smart and resourceful. We love living and those around us. It is okay to be scared, but each of us does not know the depths of our own inner strength. We have all these positive traits.

It would be far too easy to label The Wicked Witch of the West as fear, or evil, or cancer. She sure is scary and selfish. She is green, the color of envy. As a child, I would cower and hide behind a large upholstered chair as I watched her each year when the movie was aired on TV.

The witch terrified me to my bones. Those. Monkeys. Freaked. Me. Out.

Switch to Elphaba in Wicked and I absolutely love her. She rises and conquers. She is just as green, but now it is beautiful and healing. Her greenness defines her. She has serious challenges. In the end things work out for her (just as they do for Dorothy in the 1939 movie). How I think about the witch depends on the version of the story. It’s a perspective thing.

The business of cancer really screws with identity.

I knew exactly who I was before 2012. I was a successful and established teacher working in a district I loved at a school I loved. I was a devoted daughter and good friend who found joy in helping. I was in the process of becoming an adoptive parent. Joy, joy, joy to me.

Cancer turned all that upside down. I retired. My parents are deceased. No one calls me daughter now. Plans to adopt came to a halt. My life has changed dramatically. I can’t get back the way it used to be. The list of those who help me is longer than those I can help.

Cancer steals identity.

 It steals hair and creates an unrecognizable stranger in the mirror. I used to be unrecognizable to others, too. I could stand right next to someone I knew who hadn’t seen me in a while, and they wouldn’t know me. I was a stranger with straight brown short hair that framed my face. It suited me. Looked natural. Worked out well if I didn’t want to see someone, but I usually did. Usually. When I took off my wig, I became another version of myself that was unrecognizable. Little hair remained, mostly grayish, not enough to be accepted as a cute style that I’d have on purpose. The little I had eventually disappeared. The lack of eyelashes and eyebrows compounded the look. Cancer stole outside and inner identities.

Cancer is a master thief.

I felt the real me disappeared into the past. I didn’t know if I’d ever see her again. I missed her. She has reemerged and I look more like the me I know and love.

But how long will she stay?

Identity isn’t solely based on the way I look. Cancer has messed with my inner self, too. Cancer may be a master thief, but I am the master of my I AM. That’s where I’ll pick up next time. Until then.

“Over The Rainbow”

Somewhere over the rainbow, way up high.
There’s a land that I heard of once in a lullaby.
Somewhere over the rainbow, skies are blue.
And the dreams that you dare to dream really do come true.

Someday I’ll wish upon a star
And wake up where the clouds are far behind me.
Where troubles melt like lemon drops away above the chimney tops,
That’s where you’ll find me.

Somewhere over the rainbow, bluebirds fly.
Birds fly over the rainbow;
Why, then, oh why can’t I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can’t I?

I sincerely hope you were humming if not singing. 🎶

Scalp Cooling and Cancer

Using a cold cap marks another first for me.

It’s my third time facing a treatment that has a strong (almost certain) chance of hair loss listed as a side effect. Total hair loss was a sure thing the first time I needed chemo. I went to the salon and had my head shaved. I had a wig but didn’t plan on wearing it. It didn’t look like me, feel like me, and it felt uncomfortable. I felt I retained my identity in a head wrap.

Cold caps at this time were being used in Germany but not in the U.S.

The second time where I was likely to experience hair loss was when new treatment followed oral capecitabine where my hair had already thinned considerably. My next line of treatment was likely to cause me to lose even more. This time around, I looked into cold caps. Some had been FDA approved and were being used in the U.S. I wanted to do it. The more I learned, the less of an option it became. Caps needed to be changed every twenty minutes. You needed someone to help change the caps. It needed to be worn before and after treatment – how long depended on the specific treatment you were receiving. I learned I would need to wear the cap a couple hours prior to and after treatment. I lived alone and I doubted I was going to find anyone who had full days to devote to cap changing. I also learned a person still lost up to half their hair. I didn’t have any more to lose since I already felt I had lost about half from my previous line of treatment. It was too much effort for something that maybe would sort of possibly work hopefully a little bit. I didn’t shave my head. I decided just to let hair fall out if it was going to. Most of it did with effects similar to if I had shaved it. I opted for a wig. I could avoid stares when out in public. It suited me. I felt like me. It was comfortable. I felt more normal and like myself.

I wigged for three years.

I finally had my hair back by last November. I love how it feels. It’s been a beautiful mess during the time quarantining during COVID. I found that ironic that I had all this lovely hair that no one ever saw and I couldn’t get done.

God sure has a sense of humor.

Then came the blow that I needed to change treatments and the best option would probably wipe out my hair for a third time. I didn’t want to see my hair go again. The emotions and tears attached to hair loss are intense. I decided to revisit the cold cap world and was somewhat relieved to learn there is now a machine at my treatment site provided by Paxman Scalp Cooling that a patient pays out of pocket to use. Please note my only connection to the company is as a customer using their product.

Everything is managed while you are on site receiving treatment. Nothing needs to happen at home. You are hooked up to this machine that pumps and keeps the cap cold. A nurse gets you ready, secures the cap, and runs the machine. You eventually take over and get ready on your own.

Why do I write I was only “somewhat” relieved? I still had to willingly freeze my head for a shot at keeping some hair and pay for the privilege of doing so. It still was probably going to thin, but I’d be starting with a full head of hair this time.

I would take a shot.

Cold caps or scalp cooling systems work when the scalp is cooled to reduce the amount of chemotherapy that reaches the hair follicles. The hope is hair may be less likely to fall out if less chemo gets there.

My head isn’t really frozen. The scalp is brought down from around 98.6°F to between 64°-72°F. It wasn’t an all over football Saturday in November kind of cold. It was more of an unnatural numbness of combined cold and heavy sensations that you could still feel. It does get better.

Time is broken down into four parts. There is a 30 minute pre cooling time to get your scalped cooled and ready to receive treatment. Doxil (doxorubicin liposomal) is what I’m getting and that takes 60 minutes to infuse. Then there is a 60 minute post cooling time period. Lastly, you thaw for about 15-20 minutes so hair isn’t ripped out of your head that is frozen to your inner cap when you remove it. It all adds up to just about 3 hours from start to finish.

I hope you agree it doesn’t suit me. I assure you it is not comfortable. I want to keep being the me that I see in the mirror. I’ve been told I look like a pilot or an astronaut of the past. And yes, I know my mask matches my eyes.

What is it like?

It’s rather hilarious the process is called scalp cooling. I think the word cooling is used for some type of psychological effect. The machine was turned on and there is a whoosh of cold filling the cap. Seconds tick by and it indeed gets intensely cold in an instant.

A person is forewarned that the first ten to twenty minutes are the worst. After that, the scalp is numbed enough so it doesn’t feel as cold. I want to be crystal clear on what I feel. Fear fills almost every fiber of my being as I fight through the first ten minutes of each session. I wonder if I can get through this torture I’ve willingly chosen. The feeling of desperation is almost more unbearable than the intense cold. I have fought back tears for the few minutes every time. My tolerance for pain and discomfort is quite high. Living with metastatic breast cancer does that. I can barely keep it together.

But then I acclimate and focus on other distractions to pass my time.

The cold didn’t bother me as much as the tightness and chin strap. The chin strap is the worst part and almost intolerable. The covering worn over the cap must be kept on tightly so that the inner cap stays snug on your scalp. This makes it hard to talk and eat because it’s that tight.

Wearing a mask added another layer to my discomfort.

Feeling a little sick added yet another layer. I was fighting it and waffled back in forth from the root cause of feeling light-headed and woozy. Was it the drug? Was it the cold cap?

Both? Or was it just all in my head?

After I was disconnected from the Paxman cooling machine, there is a thawing out period of around fifteen minutes before the cold cap is removed so your hair isn’t adhered to the cap when taken off. Getting the chin strap released helped a lot.

Nurses are special humans. No ifs, and, or buts about it. I wasn’t feeling so hot after my first session. My lovely nurse gave me a head start to go get the car. Meredith wheeled my carry-on suitcase outside to the drop off lane and waited for me there so I wouldn’t have to lug it all the way to ramp and up flights of stairs. I still had two bags to carry on my own. Scalp cooling requires me to bring much more to my sessions.

How’s the cap working?

I’ve told very few people I’m scalp cooling. I wanted to see what happened. Nor did I see the point of a grand announcement since I don’t go very many places thanks to the pandemic. My new treatment qualifies as one that causes immunosuppression. Even fewer people see me.

I have had two rounds of Doxil (doxorubicin liposomal) so far. Cycle two went more smoothly. I didn’t feel sickish from the drug or the capping experience. Time passed a little more quickly. I am expecting each time to feel easier. I know what to expect and how to manage it all.

Success rates vary with different treatments. Paxman considers the cap successful if you keep 50% or more of your hair. My bar is higher. I want minimal loss with no visible bald spots. I’ve seen many pictures of women with bald spots on their crowns. Seeing these discourages me. Time will tell. Shedding is expected. Lots of shedding apparently.

Shedding is normal. Normal shedding is normal. There is NOTHING normal about chemo. Absolutely nothing. The bald spots on someone’s crown and other places on the head are referred to as shedding. Shedding on chemo goes far beyond normal shedding. A person is bald. My definition differs from Paxman.

Maybe I’m splitting hairs.

When a snake loses its skin, new skin is there to take its place. It’s not even a close call. A snake doesn’t have some bare spots where new skin didn’t develop. Shedding crosses a line quickly with certain chemos and it becomes hair loss. Call it what it is.

I should be wearing a wig or wrap by now if I weren’t scalp cooling. It’s been 45 days since my first cycle with Doxil. My hair doesn’t feel the same or look the same. I can wash it only weekly. There are many cautions against styling it. I am to refrain from getting it colored or cut. I even need to be careful combing it. But I still have it. I will count every day I have it as a win. So far, I’ve experienced minimal hair loss (or ahem, shedding).

I am fed up with accepting hair loss in my life. I’m hoping this third time is the charm and I have found a way to keep it.

If not, you’ll see me sporting a variety of looks and you will know it isn’t working as well as I hoped.

A bit messy, but a realistic look for me. So far, I’m hairy happy with the results.

I AM

I feel like the last few weeks of my life have been incredibly full and jammed packed. Too much is happening all at the same time. It always happens that way, doesn’t it? I haven’t been able to write a new post for today. Instead, I’m posting a poem I wrote about two months after I was diagnosed in 2012. It still rings true for me. It’s still my voice, my heart, and who I am.

In the original version, the font gradually gets larger and larger as the poem continues. I can’t do that the way I want on WordPress.  If read aloud, my voice gets louder and louder in a slow crescendo. That doesn’t work in this format either. Just sayin’.

If I had to add anything new my writing, I would include that I am a badass.

         I AM

I am not cancer.

I am not my hair.

I am not chemo, surgery, or radiation.

I am not my breasts.

I am not a project.

I am not defeatable.

I am not stoppable.

 

I am AMAZING.

I am NURTURING.

I am SUPPORTIVE.

I am SMART.

I am CLEVER.

I am DETERMINED.

I am POWERFUL.

I am a WINNER.

I am BEAUTIFUL.

I am LOVELY.

I am SEXY.

I am FUNNY.  (Just not at the same time as being sexy. 🤪)

I am FAITHFUL.

I am SPIRITUAL.

I am THOUGHTFUL.

I am UNIQUE.

I am CREATIVE.

I am ORIGINAL.

I am WISE.

I am FUN.

I am SWEET.

I am POSITIVE.

I am UPBEAT.

I am a DAUGHTER.

I am a SISTER.

I am a FRIEND.

I am a TEACHER.

I am a LEARNER.

 

I AM TOUGH.

I AM STRONG.

I AM A FORCE.

I AM A SURVIVOR.

I AM JOY.

I AM LIGHT.

I AM PEACE.

I AM KIND.

I AM LOVED.

I AM GRATEFUL.

I AM BLESSED.

I AM IN LOVE WITH LIFE.