Math, English, and Cancer

During the summer of COVID-19, I commented on a riddle posted by a friend on Facebook. I answered correctly and reposted it as part of the deal. Things got crazy after that with the many answers I received. Psychology papers could be written on behaviors from analyzing the way people responded. I found these reactions more fascinating than the answers people gave.

Here’s the what I posted:

Why did I participate? I rarely partake in social media challenges and group activities that involve my committing to share with others. I try to stick with content that involves me directly or issues that are important to me. So, why this one? It was fun. I read the problem carefully and figured out the tricky parts and was pretty sure my answer was right. I like being right as much as the next person. It was also something to do that I hadn’t done before. I have found myself bored at times during the pandemic. That’s my story and I’m sticking to it.

I am not here to fault those who were incorrect. Notice I’m not sharing the answer as it’s not important. I am not going to respond to guesses left as replies. You can check Facebook if you need to know the answer. My focus is on human nature. I am not a psychologist. My only qualifications in offering my opinions are as someone who has observed a lot of people informally as we all have.

These opinions are mine:

Q: Why did some comment once, accept they were incorrect, and move on?

A: They thought about it and then forgot about it. They just weren’t into it. They had other interests.

Q: Why did some answer multiple times?

A: They were into it and couldn’t let it go until they knew the answer or died trying. Both resilience and insanity cover these folks. Naturally, anyone who both reads my blog and answered several times has categorized their behavior as determined and resilient.

Q: Why did some comment privately and not post their answer to be seen by others?

A: Privacy is a treasured commodity these days. Some people are more private and don’t like posting publicly.

Q: Why did some who were correct write their answer in the form of a question whereas so many who were wrong committed to their answer decisively?

A: Perhaps these folks were humble and modest. Perhaps they saw the long list of incorrect answers and felt a wave of insecurity. What struck me as curious was not one of the wrong answers had a question mark after it. It was only a few of the correct ones that answered using a question mark.

Q: Why did some bring in other people who critiqued the language of the question when their initial answer was incorrect?

A: Tone is hard to detect sometimes in writing, especially in texts or quickly written comments. I couldn’t tell for sure if one person was insulted or not that her response and reasoning were deemed incorrect. Her fellow supporter backed her up and I thought they were planning to take it to whatever higher court they could find. I discovered she was even having conversations about it on her own timeline. I hope this means that she is passionate about puzzles. She would have made a good lawyer. Maybe a detective.

My opinion is some people made the question far too hard and introduced variables that didn’t exist. There were no lions hunting that day. Everything happened in linear time and in the same general setting. But hey, it is 2020, and I suppose a parallel universe exists for riddles. One friend I taught with asked me when I was going to share the right answer. I wasn’t planning on it per how I interpreted the directions. Only those who got the right answer would know so they could have the honor of posting. I decided to go ahead and post it simply because I felt bad repeatedly telling a couple people they were wrong. A bolt of lightning wasn’t going to strike me for going against the rules. It wasn’t a big deal. One childhood friend commented afterward that there had been family debates and involvement from neighbors. I guess that means I’m not the only one who has experienced some periods of boredom with life as we know it these days.

Again, I find it all fascinating. Rarely have I posted anything with as much interest and interaction. Posts about cancer haven’t received the same attention and level of response. Honestly, that frustrates me because this riddle doesn’t matter one bit. Cancer sure matters but too many keep scrolling past those posts because they aren’t “fun” posts.

Math is concrete. Even if there are equations with imaginary numbers and unknowns, answers are still derived. I love math. I no longer have the quadratic formula memorized, but it was used regularly in younger days. As a teacher, I loved teaching that there were multiple ways to arrive at the same answer. We learn to do a long math problem methodically and break it down into parts. We go back and find our mistake if something doesn’t add up.

English and words can be up for more interpretation. There can be ambiguity. Some words have subtle differences. As readers, some of us are more apt to read something quickly and miss needed information. The thing is we often don’t know we missed something and we don’t go back and reread. I miss information. I missed information in a novel my book club read that was provided in the first chapter. Hence, I was sure this big event was going to happen in every chapter that the author let readers know was going to happen toward the end of the book. I didn’t catch it.

So, I wonder . . .  is cancer more like math or English?

There are some absolutes like with math. Math is used in formulating treatment drugs and prescribing the needed amount. Tumors are measured in terms of millimeters and centimeters. Statistics are applied to the probability of very early stage cancers not returning after treatment. Drugs for metastatic cancers come with an average number of months without disease progression. Studies and trials contain graphs upon graphs of data. There is math involved with my oncologists, nurses, and the pharmacists that I know nothing about. There are a lot of numbers in cancer. Mathematical oncology applies computational models to help understand cancer development, growth, and reaction to treatment. I do not pretend to understand but seriously question if it may be used to prevent a patient from trying a treatment because the math doesn’t support it. It would be the worse case scenario of someone being reduced to a number and not a person with other important factors influencing a treatment decision.

Cancer can also be like the English language (or any language). Anyone who has had cancer or lives with cancer has a unique story to tell. My story is different from yours. There may be similarities, but we’re each our own storyteller using our own lexicons to share our stories. Our myriad stories convey hope, sadness, love, fear, joy, and anger. We speak and write of the factual details of cancer. Whether spoken or written, our words express anxieties that come with scans and office visits. Stories are emotional. Life is quite a story.

A cancer story isn’t understood by everyone. I understand not everyone understands what the word metastatic means. Reporters should if they are covering a story concerning it. They need to know it can’t be cured. Nurses need to know. There are different interpretations on what chronic means when referring to cancer. Just to be clear, Stage IV cancer isn’t chronic. Chronic means you have a manageable disease where you can still reach a normal life expectancy. We aren’t there yet. I want it to be chronic as much as anyone. Is it correct to refer to someone who is metastatic as a survivor, thriver, lifer, or another term? It gets complicated because individuals prefer what they prefer. Words can push buttons. Words that push mine are journey, cancerversary, and words describing cancer as a battle. For example, people don’t lose their battle. Saying that implies they are losers because they died. Utterly wrong. They died and it’s awful.

Then there’s the human nature element. Some of us may be more vocal whereas others want to comment privately. Some got it figured out on the first try and some kept trying over and over and over again. There are those who will advocate assertively until the right person shares their interpretation of data. Some of us will keep trying. If one solution doesn’t work, we will keep hammering away at it. We all have different ways of approaching a cancer experience just as there were different ways to approach a number story. We are all different. We are alike in wanting an answer.

Unfortunately, cancer is still a riddle. One that needs a definite answer.

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. 🎶

Morning Yoga

I want to stay as healthy as possible so I can do the things I want. It’s been harder lately as I’ve experienced some side effects in my feet and hands that make moving not fun. I believe they will improve. I believe I have some control. Who knows if I do or not, but I like to believe I do.

Belief is powerful.

We become what we believe. Beliefs become our words and actions. Keep in mind I don’t believe I brought on a cancer diagnosis by my thoughts or actions. No blaming myself. Belief is part of my personal treatment wheelhouse. I believe I can maintain my health. Staying active is the action to match that belief.

My oncologist told me not to alter what I was doing as a means of preventing some of these uncomfortable and at time painful side effects. I’m not sure she fully understands how intense I am. I don’t look super athletic. I’m not. Yet, I push. I sweat. I make decisions I question once I’m well past the point of no return. I woke up the morning after my first cycle of Doxil and felt so good I walked four miles in the heat. I wake up extra early on the days of my treatments so I can get a good workout done before I go and spend the bulk of my day at the hospital. I exercise even on my down days. I choose easier work, but I still choose something. She repeated her advice not to limit my activities the day I went in for my second cycle.

With her guidance in mind, I’m still keeping up my activities, but I’ve taken it a little easier for several days after treatment and integrated more yoga into my routine. The chemo care sheet says not to create extra friction on hands and feet for up to a week after each treatment. I see yoga as a way to work on core strength and flexibility while also quieting my mind. Yoga can grow my inner strength in addition to my outer strength.

Usually, I don’t stick with it very long. I feel tired after thirty minutes and not incredibly successful. I would improve if I practiced poses more as part of my practice.

I never did yoga outdoors until one glorious morning. I didn’t think I’d like it. I felt too self-conscious. Heat and bugs would bother me. But I went for it and loved it.

No heat and no bugs made my yoga time feel more refreshing.

I love that I still have new things at this point in my life.

I’ve been rising early on Sunday mornings, even earlier than on weekdays. On this particular day, the forecast was to reach the upper 80s. Hot weather is not my cup of tea. I wanted to get my workout done before it got too hot and definitely while my patio space was still in the shade.

Thoughts of the back yard I created wandered through my mind as I practiced. I admired my red bee balm knowing I was responsible for planting it. A hummingbird visited while I was out. I see them often enough due to the flowers in my garden. I always take it as a good sign when I see them. Cardinals, mourning doves, chickadees, and robins filled the air with their singing. Dew glistened in multicolored glints off the green grass. The outdoor air felt good on my skin. My senses took in my environment.

Other than myself, there were no people and no people sounds. I was alone in this piece of paradise for a few moments. I felt total oneness with my surroundings. I noticed close to a dozen different shades of green.

There was an insane level of power and peace at the same time.

I held poses much longer than I usually do in my wellness area in my basement. My commitment was to do what felt good and not commit to a set time. I did everything I wanted and practiced a little over an hour.

It was a time I could consciously focus on my breath.

Breathe in. Breathe out.

Cloud watching was included as some breath work. Lying flat on my back and staring upward was a good rest from some hip extension work. I love watching the sky. Cirrus clouds brushed the sky. I looked for animals as shapes drifted by slowly. Somewhere in my childhood was likely the last time I took the time to see the sky from this perspective. I’m looking forward to doing it again.

When I finished, I walked in the grass barefoot. It was more needed sensory work. I am someone who has always liked something on my feet. I’ve never been a barefoot kind of gal. The dew kissed grass was too much for my toes to resist. I walked slowly and each step became part of a reflective meditation.

Maybe I used my hands and feet more than I should have. Shoulding is a horrible business. I was told I could operate business as usual. So far, my feet seem to be faring better than my hands. My palms look shiny and waxy. They are a bit red in between my fingers and have peeled very minimally. I did them in a couple weeks ago wringing out water from towels when my air conditioner broke and my furnace leaked. I cleaned it up because that’s what needed to happen. In addition to the cost of a new air conditioner, it cost me my hands. Every crease where there are joints on my fingers are red, stiff, inflamed, and painful. I’ve been using a ton of lotion on my soles and palms. Days of not adding extra stress to them have helped more than anything. It took about ten days for my hands to heal so they don’t hurt. The joints still feel leathery, look different, and flare up after treatment or when I overdo it. I will continue to practice good self-care.

Until next time – Namaste.

Two Years Blogging

My second year blogging is in the books. I’ve explored expressing myself a bit more through personal narratives and even poetry. I’ve covered a variety of topics. I hope I have made connections with readers as I’ve shared what goes through my mind and in my life as someone living with metastatic breast cancer.

There’s no need to have cancer in your life to read it and get something out of it. Not everything I write about is specific to the cancer experience. Themes of fear, trust, and identity apply to all of us. Memories of joy or moments that teach an important life lesson reside within all of us. However, it’s often when I appear to veer off the cancer path with my writing that I come back to say something about the cancer experience. Maybe I’m only speaking to me. Joy is important for anyone with metastatic cancer. Memories can be bittersweet, hopefully mostly sweet. Life lessons help us embrace the now. Some of these lessons are difficult to embrace. Maybe they help us understand our now one lesson at a time.

I am always interested in growing my audience. Please share my blog with anyone with whom you think may benefit from it. I also want to take a moment today to thank you for reading and sharing your comments. I love reading them and you are always welcome to leave a comment at the bottom of these posts. Today, I’m interested in if you’ve had a favorite post over the last year. I have many favorites, but know I am biased.

Recently, I received a few compliments on my blog’s title, Finding A Way. It conjures up many thoughts in my mind. If at first you don’t succeed, try, try again. If there’s a will, there’s a way. Look at a challenge from multiple perspectives. Approach something in a new way. Venture outside of your comfort zone. Find a way to get it done.

Find a way.

There have been some remarkable things I have attempted while living with metastatic breast cancer. I figured out how to keep teaching for four years after my diagnosis. I’ve discovered new ways to enjoy exercise. I’ve developed hacks for when things are hard. I’ve found a way. Maybe it isn’t always the best way or the easiest way, but it is a way.

The phrase “finding a way” is defined as having an opportunity, or an intention, to arrive at a specific outcome. That definition fits the vision I continue to have as a mantra in my life. My blog’s title got me thinking about other expressions that are essentially synonyms for it. It turns out there are dozens of substitutions. Some fit better than others. Some were noted as more common in the UK. Some are positive. Quite a few have negative connotations and that surprised me. Apparently, finding a way can be by hook or crook. Wordhippo.com is my source. See what you think.

Synonyms are listed in no particular order but tend to follow the order from Wordhippo. I understand if you skim them since there are many.

Getting, contriving, arranging, engineering a way, managing, succeeding in, organizing, working it, fixing it, compassing, coordinating, designing, maneuvering, swinging, swinging it, setting, orchestrating, making arrangements for, fixing, fixing up, setting up, pulling strings, pulling wires, sorting out, seeing to, finagling, framing, negotiating, machinating, manipulating, finessing, masterminding, elaborating, developing, executing, shifting, angling, cogitating, achieving, projecting, jockeying, hitting upon, carrying out, playing games, effecting, wrangling, passing, plotting, scheming, devising, conspiring, intriguing, conniving, colluding, planning, hatching, cooking up, operating, being in cahoots, collaborating, hatching a plot, concocting, faking, fabricating, rigging, forming a conspiracy, laying plans, shamming, abetting, exploiting, manufacturing, promoting, getting in bed with, coming up with, controlling, falsifying, simulating, feigning, conducting, handling, bringing about, pulling off, conceiving, constructing, staging, scamming, doctoring, tricking, wheeling and dealing, and conning.

The list goes on, but I think I’ve listed plenty.

One word that didn’t appear that struck me as strange:

Believe.

Finding A Way is about believing. Pure and simple. Unwavering. Unconditionally.

Shall I change the name of my blog to embody ideas of conniving, plotting, or scheming? Nah, it’s better to stick with ideals like succeeding, achieving, and developing. I will keep the title as is. It works. Onward to a third year of finding a way. You know what’s coming . . .

Always.

Side Effect Smorgasbord

Side effects from cancer treatments often feel like they are heaped onto an overflowing plate from a smorgasbord at the cancer cafe. Every treatment comes with a long list of possible effects with the caveats that most people don’t experience all the effects and they range in severity. That’s true enough. I’ve experienced many of them over time due to the reality of being on multiple treatments. The list below is not complete. Side effects I’ve had the displeasure of having include:

  • Nausea and vomiting
  • Hair loss
  • Fatigue
  • Neuropathy
  • Insomnia
  • Mood changes
  • Higher risk of infection (low white blood cell counts)
  • Anemia (low red blood cell counts)
  • Easy bruising and slower healing
  • UTIs
  • Chemo Brain
  • Appetite changes
  • Weight changes
  • Diarrhea
  • Constipation
  • Hand foot syndrome
  • Dry skin
  • Dryness of mucous membranes
  • Chemo induced menopause

An entire separate buffet needs to be set out to adequately serve all the undesirable dishes that accompany chemo induced menopause. Sexual side effects are a big part of menopause. Entering it as a chemo induced experience brings some unique spices and flavors to the smorgasbord. Fortunately, there are ways to address these effects so women are more comfortable and happier.

Emotional side effects like anxiety, depression, grief, and identity questions may not directly be caused by a cancer drug, but they certainly can develop or become magnified from diagnosis, throughout treatment, after treatment, or carry into what’s next. Trauma also can develop from a myriad of cancer moments. These are available at the smorgasbord and it’s all you can eat. 

Addressing mental health side effects are just as important as addressing physical side effects. No, a person doesn’t have to suck it up or get over it. Positivity is not a cure all. I may not feel like gutting myself emotionally and exposing all my pain as a casual conversation. Someone may look just fine on the outside and be struggling within.

Unfortunately, I have added a new side effect to my list in the past month:

  • Mouth, tongue, and throat problems such as sores and pain with swallowing

Fun fact: a person can’t swallow and breathe at the same time. I have had three of these esophageal spasms, triggered by taking oral medications and supplements. I’ve described it as comparable to a swallow getting stuck but there is nothing causing an obstruction. It feels like I imagine a heart attack would because I can’t breathe. Scary isn’t a strong enough word. And it’s painful.

It’s a triple F moment for sure.

The same week as one of these spasms, I discovered I had mouth sores. They were on the inside lining of my mouth in both cheeks. Perhaps as far back as my throat. No wonder my mouth hurt! It explained my ongoing pain and difficulties eating and speaking in addition to swallowing. I called the triage line two days in a row. The previous day I called because my throat still hurt from the spasm episode and I discovered one whole pinky toe had turned into a flaming blister. The blister is a sign of hand foot syndrome. It turns out I need to keep rinsing my mouth throughout the day with warm salt water and keep my mouth as clean as possible. This easy at home solution worked quickly and the sores have resolved. Omneprozole is successfully preventing any more spasms.

Drugs are often prescribed to deal with side effects and they also have side effects of their own. It becomes a vicious cycle.

Serious side effects (more serious than those covered) like heart, liver, and kidney damage can also result from cancer treatments. The term side effect seems like it’s lacking when major organs can suffer permanent damage.

So . . . which side effect is the worst?

Whichever one is happening at the present moment.

Rarely are side effects ever on the side.

This smorgasbord sucks. I want to order off the menu and go straight to desserts. Ice cream sounds delightful.

Consider responding:

  • I know my list is not complete as there are side effects I’ve dodged. Please share others if you’re comfortable.
  • What side effects have you found challenging? What has worked well to manage them? Please add your comments so others may benefit.

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.

During, Now, and Next

I often read about someone’s cancer experience in terms of before and after cancer. I also often read that there is no after for those living with metastatic breast cancer because we will always be in treatment. Extreme outliers push what is possible. They keep living with cancer year after year. People living with metastatic disease need words that aren’t in terms of before or after.

I prefer during, now, and next.

A Brief Look at Before Cancer

Before cancer was a golden time of no worries. People lived with no physical limitations. They had job security and careers stretching out ahead of them. Dreams were plentiful and ranged from travel, starting families, professional accomplishments, and personal goals. Normal life expectancies were part of the plan. Life was busy with many friends. Five-year plans were achievable and plans were made for the future without doubting the future.

I felt as others did.

Life was good then. I knew it, but I didn’t realize how good I had it.

I didn’t know the meaning of a bad hair day.

I liked October.

Thoughts About After Cancer

For many, after cancer means getting back to normal, returning to work, growing hair, and putting cancer forever in the past. Survivors post side-by-side photos of their cancer days when they were bald next to photos of a year post treatment when they feel they are once and for all done with cancer where it no longer looks like they ever had cancer.

Life after cancer may mean changes in diet and exercise. Maybe there are new considerations for returning to work or career changes. Life may bring changes in income, changes in health insurance, and changes with how bodies look. There are some who reclaim their past and work to make their life after cancer as much like their before cancer life as possible. For some it means continued support groups, giving back to cancer organizations, and participating in other ways to make a difference in the cancer community.

October becomes a month to celebrate the wonderful and misleading world of awareness. A few reminisce about their cancer days almost as if they were remembering summer camp or a crazy story from high school. I figure it’s easy to reminisce when you are on the other side and treatment is done. There are plenty who see cancer far in their past and it doesn’t affect day-to-day life one bit.

Before cancer is only a memory. After cancer is in the present. After cancer is the future.

It’s a strong possibility I would feel the same if I were in their shoes, but I’m not. I don’t know what it’s like to be “cancer free” as they say. I think it’s the same as how someone without cancer doesn’t know what it’s like for someone with cancer. Those of us with cancer don’t even completely understand what it’s like for another person with cancer. We come close. We can identify and empathize with emotional and physical pain. I have been fortunate to connect with many who write exactly what I feel. I think of these people as my friends even though I haven’t met them.

After cancer means returning to normal or the so called new normal.  In my opinion there is no normal or new normal. I describe my life as a new abnormal and wrote about it in an earlier post you can read here.

Long Ago

It’s hard for me to remember my before cancer days. It feels like another lifetime. I have grieved those days as I would a person. Grief resurfaces with some memories of the past. My eyes water lately when looking at old photos. Who was that person that used to be me? It was someone with dreams that have been shattered.

Even photos from childhood cause some sadness.

Teaching was a huge part of my adult life. I am so far away from those days now that it’s hard to remember elements that were driving forces. So many faces have changed where I taught.

Even some memories of my mom, dad, and grandma have drifted almost too far away. I hate that and I miss them.

What was it like to have boundless energy? What was it like to see my future?

I can’t remember.

The world of before is out of reach.

During, Now, and Next

Good words I use to mark time are during, now, and next.

During is like an umbrella held over now and next. It’s all the time from diagnosis onward. It includes a lot of enduring cancer related life like scans, labs, other tests, office visits, treatments, and waiting. Too much time is filled with enduring cancer when treatment days, side effects, and large chunks of time filled with anxieties or sadness take hold. Instead of after cancer I have an undefined during.

During cancer isn’t all bad. I still taught for four years during cancer. Many are able to keep working. I still live independently. I am still active. I still take vacations (just not presently). Many do all these things, too. Many retire and tell others they finally get to do whatever they want because there is no schedule to keep or boss in charge. I don’t do whatever I want because my health can get in the way, but I try. Living well while living with cancer is possible.

During cancer is a time where nothing ever lasts. I’ve lived in this time labeled during so long that I feel like my life before cancer was lived by an entirely different person.

At my core I still have the same values and main personality traits. Cancer has exaggerated some of them. I have more anxieties and more sensitivities. I am quick to cry. Heck, I’ve cried writing this post. I am more intense and more driven which I possibly could attribute to aging and becoming more confident. I put more emphasis on hope and kindness. I can still crack a joke in the midst of personal misery.

Now is an excellent word. Living in the now enables me to focus on the present moment. I appreciate my wildflowers. I listen to the rumble of thunder. I walk barefoot in the grass. I drink refreshing pink lemonade. Now is where I find joy, hope, and positivity. I work hard not to let anything crush my sense of now. I try to enjoy each day. There is always something. Waking up to greet a new day and gratefully closing my eyes to dream at night are bookends for every day.

Now is the present. Savoring the moment when moments are good stretch out my enjoyment. I savor my breakfast. I savor walks in nature when I’m surrounded by trees and see the sun shining though the leaves. I savor gentle breezes on my skin. I savor laughing and feeling loved. None of these moments can be bottled. They can be replicated as often as possible. Many moments living in the now make up a day. It’s where I live when days are good. Those days add up. I am very lucky for the now I have carved out and the now where I live. Now is all I really have. It’s all any of us truly have.

Living my life involves multiple treatment plans. The word next comes into play when I switch to the next treatment. It also applies to my next cycle of whatever current drug I’m receiving. My treatment visits number into the hundreds. Life is filled with more worries and anxieties. I worry I’ll never again have hair when I’m without it. I worry I’ll soon lose it when I have it. It’s one of my big current worries.

Next is my future. I think about next week or next month. I think about my next piece of writing. I think about what I want to work on next with my trainer and my next physical goal. I have goals for next year. I cautiously make plans knowing they may change. I make them with the intention they will happen. I even think long term because that is energy I want the universe to have. I envision a positive and healthy future because I’m not willing to give up dreaming of my future. It may not be the future I planned before cancer, but it is mine now.

I apologize if this all sounds a bit disjointed. These markers in time are fluid and won’t hold still. Referring to words as nouns that usually function as other parts of speech may not come across in the way I hope they do. Living during metastatic breast cancer means living in an ongoing state of flux. I need sets of words to help mark different spots in the spaces where I live. During, now, and next are working well for me.

Summer Challenge 2020

According to the ancient Greeks and Romans, the dog days of summer occurred in late July when Sirius rose just before the sun. The days were referred to as the hottest days of the year. They have arrived where I live with heat indices in the triple digits. Taking a break from the heat and participating in a summer blog hop challenge through Nancy’s Point is a welcomed break from temperatures I don’t tolerate well. A huge thank you goes out to Nancy for organizing this opportunity for bloggers to connect and giving everyone getting a chance to discover new blogs.

Here are my responses to her questions:

Who are you? Tell us whatever you want about you and your blog.

How do I answer succinctly? I am Kristie Konsoer and was born and raised in Wisconsin where I still live. Jump to 2012 when I was diagnosed with metastatic breast cancer. I retired from teaching second grade in 2016. Writing has been one of my lifelong interests. I started Finding A Way in the summer of 2018 because it tied together writing I was already doing with a way to communicate with others. I initially focused on living well while living with metastatic breast cancer. This still remains a main focus although there are times I dwell more on one than the other. I have written a lot about strength, hope, identity, feelings, thoughts about cancer, and my experiences. I share what’s on my mind. I also include a quote midweek on something that has inspired me or I feel is important to share.

What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?

I didn’t feel challenged with blogging during the beginning stages of the pandemic. I found blogging a reassuring constant. I struggled a bit more as the months dragged into summer. Sometimes feelings I have about cancer are awfully heavy and these added to feelings I have about my world becoming smaller and more isolated with no end for the pandemic in sight gets hard. I keep tackling this struggle and others day by day. Focusing on positive moments throughout my day helps a lot.

I have written before that cancer doesn’t wait for curves to flatten or quarantines to end in a post from May you can read here. Continuing to push for more funding for metastatic breast cancer research has been a challenge when there is also a needed focus on COVID research and treatments. I paused briefly in my life and with my writing. There was the feeling that others have also expressed that they were uncertain about sticking to usual topics during this time. I don’t know how to describe it other than I woke up one day and just snapped out of it because I had had enough of hearing some of my efforts to raise money for more research were on hold.

What is something you’ve accomplished with your blog that you’re most proud of?

I am very proud of the body of work that I’ve created over the past two years that reflects my experience. I’ve developed my voice. I’ve written about topics that have been important to me. I have hopefully helped others.

Share two of your best blogging tips.

  1. Stick to a schedule. Have a reserve of upcoming posts that you can move around or schedule in advance in case life gets too busy and you don’t have the time or energy to give to your blog.
  2. Write about what you know. Read other blogs but be authentic to your goals and vision. The cancer blogs I read aren’t the same. I like them because they all offer me something different.

What is one of your blogging goals this year?

I need to work on marketing my blog. I want to continue to build my audience while maintaining consistent readership.

When things get hard, what keeps you blogging, even if not regularly?

Sharing my blog is sharing a part of me. I always find meaning in it. It’s cathartic. Sometimes I wind up with something different than what I planned. I find that quite amazing when that happens because my heart takes over and gives me something I didn’t know I needed. Blogging grounds me.

What is a dream you have for your blog?

A dream is that its reach becomes wider. Perhaps someday it would lead to other writing opportunities.

Share a link to a favorite post you’ve written that you want more people to read.

It’s between a story that provides a metaphor for living with cancer and a post that highlights work being done at the Carbone Cancer Center where I receive treatment. Both reflect the scope of what can be read on Finding A Way. I’ve decided to include both.

Dodgeball 

Research Lab Tour

That’s it from me!  Thanks for reading. Hopefully, I’ve linked everything back correctly to Nancy and technology works as expected. Be sure to check out Nancy’s Point and the other bloggers participating in Nancy’s summer challenge. Click on the link at the bottom of the post to read more posts on the hop. Discovering new blogs is a perfect way to spend some time during the dog days of summer wherever you are.

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Trust Suckers and Trust Blowers

A person can be either a Trust Sucker or a Trust Blower.

A Trust Sucker functions exactly how you would expect. Trust is sucked right out of you over time. Maybe it’s through belittling, embarrassment, manipulation, non-shared values as to what is public vs. private information, or repeated poor judgment. It feels like air is being pumped out of your lungs and you are left gasping for breath. The sucker sucks because of what he or she needs, not because of what you are doing or not doing. My theory is trust suckers feel very alone and are unhappy with the success, independence, closeness, or whatever it is that someone else has that they do not.

Trust Blowers are the polar opposites of the suckers. Just as you feel emotionally spent after being with a sucker but may not realize exactly why, you feel differently after being in the company of a blower. Blowers send supportive, positive, and uplifting energy your way. Inhaling is easy. They truly want what is best for you. There is an overwhelming feeling of safety with blowers. They are easy to trust because you know a confidence will stay confidential.

I need to dwell with the blowers as someone living with metastatic breast cancer. It’s about not spending essential energy on people or situations that don’t serve my best health. It’s about taking care of myself and not trying to fix someone else. It’s about feeling loved and trusting myself. I don’t have the energy to waste on someone I can’t trust.

I am extremely cautious about whom I trust in my personal life. As I age, I’ve gotten better at reading people and being able to discern whether to trust a person or not. In general, I use the following as guidelines to help make decisions:

  1. Does the person share private information about others when it isn’t their place to share? Someone who talks a lot about others is likely blabbing about me.
  2. Does the person remember what I’ve shared or take an interest in my life? Or are this person’s actions usually self-serving? Why does it matter? Self-serving people will not care when they break a trust because they lack compassion and empathy. They will not think they did anything wrong and that you are the one making too big of deal of things.
  3. Is the person a giver or a taker? Givers have others’ interests at heart. Takers take and move on to the next opportunity.

Cancer has messed with my ability to trust. Before I was diagnosed, I trusted I would remain healthy and be able to work until a normal retirement age. I trusted annual mammograms and results from ultrasounds. When I went on leave, I trusted that the long-term disability company that my school district contracted with was looking out for my best interest. I now feel the goal of this company was to get me on social security disability income so they wouldn’t have to pay as much. I’ve trusted scan results and later received information that contradicted those facts. Facts aren’t up to interpretation.

There are days where I don’t even trust myself.

I’ve struggled trusting medical information. Sometimes I want to scream at the medical world just as I often did with education. There have been times where I’ve felt like a problem or a difficult patient, rather than a fellow human being. I only have minimum access to information posted regarding test results and I feel like information is being hidden from me when I ask for more. It’s my body and I have right to know. I didn’t lie in a scanner for two hours because it was fun. I do better with more information but it is a balance as too much overwhelms me. Then there have been times where I have felt I was not liked. It’s hard to entrust your care to someone when you feel that someone doesn’t care.

One recent instant surrounds a recent cancer medication I took. I had been told it was important to take it consistently in the morning at around the same time for best results. This is true for most medication. However, this apparently didn’t hold true on treatment days because it was more important to make sure labs were all good. It would be okay to take said drug in the afternoon on those days. I had to keep a patient diary to provide data for a study I was involved with on when I took it, what dose, and its side effects. I took the diary seriously. Months later I was told that no one cared when I took the med by the nurse who collected the data. Even while I stared at this person in disbelief, I told myself I would take it in the mornings even on treatment days if no one cared.

I cared.

I still have diaries that haven’t been collected because I am not on that drug any longer and I no longer have contact with this nurse. How important could this data be? What was entered in its place? Was anything entered? I also still have a one to two month supply of this drug that I was supposed to return when I moved off the study. I haven’t been asked to do so since this nurse hasn’t come knocking for it.

Guess who doesn’t care now?

I’m not going out of my way to return any of it. Chalk it up to medical protocols and schedules in the life of COVID. There are more important things our health professionals need to deal with other than my patient diary and unused pills. Yet, I can’t help but question developments in my patient experience when scenarios like this unfold over time. Details deemed important one day were discarded the next. The inconsistency still surprises me.

Trust matters in a patient doctor relationship. I try hard to trust my oncologist, other doctors, and nurses. I do most of the time. I am not the same patient I was at the start of my metastatic cancer diagnosis. I will speak up. I will ask questions. I will disagree. I will persist and ask again if a question goes unanswered. This may not be a matter of distrust as much as needing information so I understand.

I am part of the team.

I expect to walk together.

I won’t follow blindly.

Trust is built over time and is a strong foundation for solid relationships. I will always look for the blowers rather than the suckers in my life whether it’s personally or medically. Whenever there is uncertainty, and there is plenty of uncertainty, I want people I trust with me so we can walk together.