Hiking and Healing in Sedona

Sedona is a place of wonder and striking beauty. I took my first vacation in almost two years there at the beginning of summer. My intentions were to hike and experience the vortex healing that has made the area famous.

The Sedona vortexes are described as swirling centers of energy where the earth seems more alive with energy. Juniper trees grow with twisting trunks as a result of said energy. These vortexes are believed by many to support healing and cleanse negative energies from the body. People go there for mediation, self-reflection, and of course – healing.

Some just enjoy the hikes. There reportedly are around 135 different hikes one can take. I did four; two will be shared here.

Hike #1: Boynton Canyon

I walk and hike at home but found myself thinking my first “easy” Sedona hike as pretty darn hard. Most of it was manageable until the path began to climb upward toward the red rocks of Boynton Canyon. The step-ups were high, comparable to two or three steps on a staircase. The rocks themselves were uneven. My eyes were constantly scanning for an easier path. I used my hands on the rocks to help steady myself as I climbed. I sat on my butt a few times to boost myself up. My balance was alarming. I swayed when standing still. My knees were wobblier than a broken wheel on a bicycle. As I hiked, I oddly felt a strong pull to my right. A quick way down was to my right. Could this be the vortex? Elevation? Just poor balance on my part?

I called my hike done when I made my usual grunts of groans of exasperation. These are one of my signs that I need to stop doing what I’m doing. My friend finished climbing to where we decided we’d stop to meditate. I perched upon a giant rock and drank some water. I quickly switched to my Gatorade for something stronger. It usually perks me up and it did its job. After a brief rest, I too finished the climb.

I found another rock for a good rest. I looked out over the canyon and then to my right where the rocks tried to touch the sky. After a bit, I closed my eyes. Focused on my breath. Waited for something. Guidance. A sense of that universal energy. Nothing happened. I chose to focus on words that struck me as significant in that moment – balance and healing. Over and over, my mind slowly repeated these words. Something happened. My heart felt a slow warmth taking over inside. I felt a smile spread across my face and just basked in the feeling. Connection to something bigger than myself is an extraordinary feeling.

The return route was easier even though I still lowered myself down a few of those big steps on my butt.

Hike #2: Oak Creek

Oak Creek was the next day’s hike. It is mainly flat (yay) and shaded (double yay). The creek burbles along the base of Cathedral Rock. Cathedral rock has a portion that is described as a near vertical climb. We agreed we didn’t need this experience. The vortex was supposedly strongest at the end of the trail.

The sound of the creek refreshed me. Never would I have guessed Arizona could remind me of home. I felt like I was walking in parts of Pheasant Branch. The water was deeper here and flowed faster. After a good walk, we each settled into our own areas to meditate. It was deeply peaceful, but I didn’t experience any sense of a strong energy.

This trail required we retrace our steps to get back to our starting point. Halfway back, I began to experience a sharp pain on my right side where my liver is located. Hello cancer. Or hello energy? Somewhere I had read that you might feel discomfort of old injuries as healing worked. The pain vanished in a couple of minutes.

Then there was the snake. A beautiful nonvenomous snake stretched its full length (4 feet or so) as it crossed in front of us. If I see snakes back home in Pheasant Branch, they are small little things that you could easily step on before seeing them. Not this snake. I could have wrapped it around my waist and tied it like a belt. I was cautiously mesmerized by this friend. I learned snakes are symbols of transformation and healing. There’s a snake curled around a rod often seen in medical settings. It is associated with Asklepios, known as the ancient mythical god of medicine.

Was it a coincidence that I felt pain on this hike?

Was it a coincidence that shortly thereafter I saw a snake?

Was it healing?

I don’t believe in coincidences.

Time will tell. Time won’t tell if healing is attributed to the energy of the vortexes, my current cancer drug, or both.

Do I feel healed?

Yes. I felt GOOD in Sedona! Remarkably and unbelievably well. Many factors contribute to healing. I feel healed. And I’m going to hold tightly to that feeling.

Always.

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.

Phase of Treatment: Angry

Prepare to read a brief rant.

Every day there is something that pisses me off. One day it was fishing from a friend whether there was anything I wanted to share with her. No. The next day, it was my office visit that needed to be documented before I start a new treatment which is also a trial. It was mainly okay. There was a little burning when one of the phlebotomists stabbed me for labs. I had to drive back to the hospital for the drug drop off to pick up my new meds. They weren’t going to arrive in the mail that day as planned. I didn’t want to wait yet another day to start. I’m close so it’s convenient.

Yet, there are quite a few days I’d like to throttle someone. There are days I struggle.

I also hopped onto MyChart to see what had been decided on changing some nausea meds since my beloved ondansetron may conflict with my new treatment. I clicked on the tab to read my visit notes. There was a new word next to the heading that reads Phase of Treatment – Palliative.

WHAT?

I looked back at other visit notes and the treatment name was actually listed. The time before this the words “deciding what’s next” was written.

Palliative makes me angry. I know it is supportive care for a patient at any stage of illness. It is not end of life care even though many people use the two interchangeably. Hospice is end of life care and can include palliative care.

BUT WHAT THE HECK?

First of all, this change was never discussed with me. Since I am the patient and I matter, having a conversation about a change in terminology would have been appropriate, maybe even required. I could have opposed it from the start. Secondly, there is nothing palliative that I am being offered at my cancer center. Nothing. I have been in charge of all of my supportive care myself. This has included massage, acupuncture, sauna, working with a fitness coach, therapy, Reiki, spiritual work, supplements, and other supportive care. Even the cold capping had been my responsibility. I paid for it. I brought the cap and my supplies. They operated the machine.

If anything, I have felt at times unsupported with recent developments.

I think ANGRY would be the current best descriptor to go next to phase of treatment.

I replied through MyChart to my NP with whom I had my visit.

I asked in writing it be removed.

This is part of my medical record and it’s false. I am receiving treatment. They haven’t provided anything palliative. I don’t want someone unfamiliar to read it and make assumptions about where I am in my experience that could cause them not to offer me something or cause me not to qualify for something down the road. If it isn’t removed, a call to Patient Services may be warranted.

Let me be clear that there is nothing wrong with the term palliative. It can provide a lot of needed support and services. My beef is I am in charge of my own care and fully independent. My cancer center does not get to assign this term to me, particularly when they haven’t provided any related support and services.

So what happened?

I received a call this morning from my NP. We talked about a new nausea med I would try. Then we got around to the whole palliative issue. There is a new template in place for notes. One of the changes are boxes that are checked to describe the phase of treatment. Here are the choices:

Adjuvant

Neoadjuvant

Observational surveillance  (when no other treatment is available or chosen)

Palliative

Other

I explained all my reasons I wrote about above and spoke my mind. She explained the choices of boxes. Palliative means “active treatment for metastatic disease” in their world. This differs massively from the supportive care definition. She said others reviewing my records from different treatment facilities would know what it meant and it wouldn’t exclude me from a trial or other treatment down the road. I don’t think either of us can know that for sure.

I said I’d be more comfortable with “other,” but it isn’t being changed. I will hold off on Patient Services because in the grand scheme of things this may be a small deal rather than a big deal. Being identified as “other” may raise more red flags. I believe I won’t be the only one asking why their treatment is being labeled as palliative. Perhaps a box specific for MBC is needed.

I have my answer. My brief rant is done.

What does palliative mean to you?

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.

Cold Capping Update #2

Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.

Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.

Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.

This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.

Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.

So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.

One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.

I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.

I just keep losing and I don’t know how this is my life.

I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.

I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.

Maybe, maybe, maybe.

People would sooner have regular colonoscopies.

There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.

At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.

That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.

We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.