Those diagnosed with any form of cancer immediately are thrust into a world known as “the new normal.”
It is anything but normal.
“The new abnormal” would be a better name.
Normal will never happen again for me. My reality of attempting some form of normal for the last seven years doesn’t mean life is normal for me. It means I’ve learned how to exist in crazy. Maybe I should refer to present-day life as my old crazy because I’ve existed this way for so long. The new normal phrase has always rubbed me the wrong way because normal was ripped away and replaced with nothing of the sort.
Is calling what I do the new normal supposed to somehow make me feel normal? It doesn’t. Instead, it makes me feel like I can’t even do the new normal normally. Is it meant to make me or others feel better? It doesn’t make me feel better. I’m not sure if it makes others feel better. It potentially minimalizes what I do in the eyes of others. It invalidates my struggles in what really is abnormal because of the language that this is the norm.
The new abnormal is a topsy-turvy world of back and forth. It’s a world of opposites. I have felt wonderful and miserable.
I’ve gained and lost weight even though my level of exercise has remained about the same.
I’ve had my share of down days plagued with fatigue and others with more steroid induced energy than I know what to do with.
I’ve had no appetite and other times where I’ve eaten everything in sight.
Diarrhea. Constipation. One word sentences here are fine.
The medical world is a potpourri of repeating abnormalities. There are more one word or near one word sentences coming.
Labs. Office visits. Treatments. Side effects. Repeat.
Scans. Anxiety. Regrouping. Repeat.
I call insurance companies and billing departments far more often than is necessary. I rarely did when my life was supposedly normal.
I’ve gotten to feel at home with nausea. Ondansetron works well for me when it hits.
I’ve gotten to feel at home with many other drugs and supplements. I know what works for me and what doesn’t. I know my body well. I think I have finally broken through and convinced my team NOT to give me one particular drug used during MRIs that causes a worsening reaction. Every office visit begins with a review of my long list of medications.
How is any of that normal whether it’s the new routine or not?
In between all of this complete abnormalness are all the attempts to squeeze in any normal moments that are possible. ME time. I exercise and plan activities I enjoy that will keep me moving. Time with family and friends fill in normal moments. Football season has started. Go Badgers! Special occasions are sprinkled into my schedule when possible. There still is meaningful work that matters to me. Whereas my schedule had always been fairly rigid, I love the flexibility I now have. Being able to focus on purposeful work has been one part of my new abnormal that feels pretty close to my old normal.
The only constants are change and the need to live in the moment. Cancer has taught me lessons in change repeatedly. I am more present. It’s why I like #NotTodayCancer so well because I can be pretty definite about certain things as I go through my day.
The new normal is not the right term for how I live. Life is abnormal. Calling my life permanently abnormal is the best fit.
The role of a teacher is important and valuable. A teacher’s influence is still seen years later. Students return to say hello, to thank you, to hug you, and to say they made it. It’s the best kind of recognition a teacher can receive. I enjoy seeing former students. The oldest students I taught must be around thirty-five or thirty-six years old by now. For the record, I’ve taught around 543 students. Admittedly, those numbers make me feel old, but it’s a good old because I loved teaching. Working with children brought me immense joy and sometimes it drove me crazy. There were good days and hard days as are inevitable when over twenty children were put together on a daily basis.
I remember one student of mine who had very troubling years getting through elementary school. He was violent and destructive. He scared children. He scared adults if I’m being honest. Staff eventually learned some of his trigger words and actions that foreshadowed he was close to losing whatever control he had of himself. One such signal was if he suddenly started clucking like a chicken. He was a teacher to us in that way. We all wondered if he would make it through middle and high school. He did. He returned with other graduating seniors several years ago to visit. We talked and he struck me as happy and excited about his future. He had plans to attend a community college and learn a trade. He told another teacher that he was better now. Elementary school held a positive place in his heart even though it was excruciating for him. He wouldn’t have returned if we hadn’t mattered.
Curriculum is significant, but HOW teachers teach it and the connections we make while doing so are even more important. I always thought my two largest roles as a teacher were to help my students become critical thinkers and to teach them to be kind to one another. Knowing how to think and be kind will positively impact the world more than knowing a lot about numbers, science, or words (all of which are amazingly awesome on their own).
I am finally getting to how all of this connects to storms. Life has storms. We need to know how to think and be kind when one of life’s storms comes our way. Storms are teachers.
Poems also are powerful teachers. Writers create images that stick with people for different reasons. Mark Nepo is a poet and spiritual advisor who has taught poetry and spirituality for over thirty years. He has written fourteen books and has a wide following. He also is a cancer survivor. His poem titled Behind the Thunder weaves together ideas of learning to be strong without losing yourself. I believe its point is that an event can change you but that you don’t give yourself over to it. At its core, the poem is about resilience.
Behind the Thunder
~ Written by Mark Nepo
I keep looking for one more teacher,
only to find that fish learn from water
and birds learn from the sky.
If you want to learn about the sea,
it helps to be at sea.
If you want to learn about compassion,
it helps to be in love.
If you want to learn about healing,
it helps to know of suffering.
The strong live in the storm
without worshipping the storm.
Cancer is one bleeping kind of a storm.
And no, I can’t use the word I’d like to use after a poem written by Mark Nepo.
It wouldn’t be right.
What a storm it is. It has drenched me. I have lived with this storm. Like a fish that has learned from water, and like birds that have learned from the sky, I have learned from the storm. I have suffered, but I feel I have also learned a little about healing. This is what the storm as a teacher has taught me:
It’s better to exist in the storm from a place of healing rather than a place of suffering.
The storm has made me stronger than I knew I could be.
The storm hasn’t broken me. It won’t. It can’t destroy my soul.
Cancer has been a rather cruel and unrelenting teacher, but effective. Maybe it intended to turn me bitter and negative, but it failed. Through it, I have learned about joy, kindness, peace, and gratitude.
Just because I live in a storm doesn’t mean I’m a human lightning rod. I will protect myself seeking shelter and sanctuary in whatever way I can.
The storm has not made me ugly. I am more beautiful than ever. Living in this stupid storm has taught me how to finally embrace and recognize my beauty.
There are some who will never understand how I think or feel about this storm. It’s okay. I don’t understand myself a lot of the time anyway.
Others live in similar storms. We can support one another and learn together.
There will be more storms.
I am resilient.
Thunder can’t hurt me.
It’s the lightning that’s the problem.
I’m still learning.
What lessons have you learned from living in a storm?
Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Writing is a way to self-reflect, express my beliefs, and share my voice with others. Tara Parker-Pope wrote an article in The New York Times titled Writing Your Way to Happiness. One path to happiness is through writing a personal story.
The goal is to create an “optimistic cycle that reinforces itself.” She explains that although our inner voice is choosing the words as we write, we can go back and edit our story. For example, I may choose to write a story about a session with my trainer, or planting morning glory seeds, or being kept awake by a thunderstorm. Rewriting it can bring about behavioral changes, improve happiness, and lead to better health.
Bringing about behavioral changes, improving happiness, and working toward better health are all important to me as someone trying to live well with cancer. I’ve written quite a bit about the progress I’ve made with my trainer. Through the rewriting process, I discovered how negative self-talk hinders me in my training sessions and then I made some changes. Maybe I’ll write a story about morning glories and understand why they make me so happy. Writing about sleepless nights during bad weather may motivate me to sleep in my basement where I can’t hear anything which in turn makes me feel a lot better the next day.
Stories lead us to better understand ourselves.
For anyone interested in journaling specifically about health, consider the following prompts:
What changes do I want to make in my behavior? Why do I want these changes? What is it I am hoping to gain? What is my plan? How can I take the first step?
What things make me happy from the inside out?
What small goals do I have that can lead to better health?
Or write a story about morning glories or something you think is entirely irrelevant to your health. After it’s written, you can look for possible connections that you didn’t see at first.
Timothy Wilson has researched writing as a way to change core narratives successfully and calls the process “story-editing.” His background is in social psychology and focuses on self-knowledge and behavior. I recommend one of his books, Redirect: Changing the Stories We Live By, for further reading if interested. He sees writing as a pathway to bring about change. A writer writes for about twenty minutes a night for three to four nights, and each night goes back to edit the narrative. The outcome is that a more honest narrative is written through reflection on consecutive nights.
It’s an enlightening process.
Try it out: Think of a recent situation where you felt some anger.
Anger is a wonderful feeling to use for this exercise because you have automatic conflict.
On the first night, just write a very brief account to get the bare bones of the event written. It’s nothing fancy. Focus on your feelings another night and how to convey those through descriptions or specific actions. Add dialogue another night. Or just see where the writing takes you each night. You really don’t need a plan if you don’t want one. Just write.
Sometimes I wind up with an entirely different piece of writing than when I started.
I see writing your way to happiness as much more of a “revisioning” of a core narrative than editing, especially where endings are concerned. Revising involves bigger changes. Some parts stay, some go. Ideas are expanded. You try things out and see if they work. In Wilson’s book, one of his exercises is called “The Best Possible Selves.” He asks a writer to imagine his or her life twenty years from now and write about how everything has gone as well as it possibly could. Details about how the events of things happened are to be included, as well as meaning, hope, and purpose. Again, writing for twenty minutes a night for three to four nights is part of the directions. It gives your subconscious time to ruminate and work through whatever needs more thought so you can make more progress the following night. I think this is the same reason you are asked to write in the evening.
The part about including details about how future events happened is important. Being specific helps you form a picture in your mind of what you want. It makes a picture with words. Adding meaning, hope, and purpose also makes your vision super clear. Clarity in meaning and purpose makes what you want more probable.
I can tell you in my version I am completely healthy, retired, and enjoying every day doing the things I love. Writing sets a powerful intention more than thoughts or spoken words. It involves being really clear on what you want and organizing your words in the best possible way to express your specific intentions. I found that reading what I wrote out loud to someone after I completed the exercise also very revealing because my soul really responded to the core beliefs that I hold the dearest about my future as I put it all out there to the universe. Writing your way to happiness is one positive affirmation after another.
Writing something down tells your brain that your ideas, thoughts, and goals are important.
Writing engages us with our thoughts and helps us process emotions. It makes those thoughts concrete. It prepares those thoughts for becoming actions. Writing really serves as a blueprint or map for all that unchartered emotional and mental territory. Regular journal writing about feelings or uncomfortable events can help lower anxiety and help a person sleep better.
In the world of living well with cancer, I have both read and written. I am still learning how to write what I know and believe about cancer.
This is how I break down words about cancer:
Medical journals/scientific articles on cancer findings/advancements. I’ve avoided reading many of these articles and journals as they aren’t written for patients. Once it was suggested I read one per month, but I found them confusing. Or upsetting. Or not applicable.
Test results also can be confusing (or upsetting, or have unclear applications), however, these are much more important to understand because they affect the patient intimately.
A personal health journal to document the factual side of a cancer diagnosis. Surgeries, treatments, radiation, medications, side effects, tests, appointments, and schedules fall into this category.
Diaries/journal writing from survivors, thrivers, lifers, however a person best identifies. There are narratives filled with tips. Some write about living with cancer. Some write about beating cancer. Some write about dying from cancer.
Fictional stories where characters have cancer. They read differently than biographical accounts but contain many of the same sentiments of life and/or death. Some hit the mark – others do not.
Advocacy writing that argues for better research and treatments for later stage cancer patients. In my opinion, the world needs more of this kind of writing. People focus on the wrong drivers of “awareness” or accuse women and men of being “negative” if they write about the hard, scary, and ugly parts of cancer. Change will come through advocacy. Current widespread attitudes need to be challenged.
Celebrities sharing their “I never let cancer get the best of me” stories. How courageous . . . and . . . inspiring? I think it’s just ducky if they never experienced one moment of fear, doubt, or anger. If you can’t tell, I don’t believe them. I would be more impressed if they used their platform in the public eye (that is much more far-reaching than mine) to put a mark on metastatic breast cancer that can’t be ignored or dismissed. It makes me sad. I feel like they don’t understand. Maybe they can wear pink and that will make it all better.
Private writing reflecting on some of the questions above or your own.
A few write blogs. 😉
Am I missing any?
Writing forces a person to process a pesky thought that has been floating about unrecognized or undefined. Once on paper (or the computer), it lets you see what you were thinking or feeling. If it isn’t quite right, you revise until your inner voice has spoken.
I end this post how I began it: Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Two years ago, I saw an osprey on a warm summer day. It landed squarely on a small tree right in front of a window in my family room. There couldn’t have been more than six feet between us. It should not have been there at all because these birds like water areas filled with fish. A small pond is located a stone’s throw from my home, but I have never seen anyone fish there. Yet, there on a very obvious branch perched an osprey for me to see it. It got my attention. Right away, I knew it wasn’t a red-tailed hawk or a peregrine falcon. I had no clue what it was, but it edged closer to my window for me to observe for around twenty beautiful seconds. We stared at one another. Moments later it spread its wings and flew away. I grabbed my bird book and took to the internet to find out what I saw and what the sighting meant.
I learned ospreys submerge their entire head underwater when preying on fish. They symbolize that you can be very much out of your comfort zone (or usual environment) . . . and survive. These birds teach us to take risks, not be frightened to take risks, even if opportunities seem out of reach. Although all birds are messengers, ospreys bring awareness that an important message is on its way.
They remind us:
YOU are ready.
YOU are skilled.
YOU are fearless.
The rest is up to us.
Like the osprey, I have been very much out of my comfort zone and survived.
I have survived many things. I have survived chickenpox, many flu viruses, and other illnesses. I have survived bullying. I have survived airports and air travel. I have survived chemo and a myriad of other treatments and side effects. I have survived tornado warnings and personal emotional storms. I have survived the pain and grief that follows the passing of loved ones. I have survived many challenging students in the classroom, and they have also survived me. Surviving cancer is just one thing I’m living with and doing my best to survive. I am so many things, as we all are. Being a survivor is just one part of me. I’ve changed, but I call myself a survivor because I am still here.
Taking risks is part of living a fulfilling life. Some look at risks as adventures. Some thrive on danger. Some choices in life don’t seem to be choices, but rather the only choice you could make at any given time. I felt like this when choosing my first round of chemotherapy. I felt it again each time I needed to move on to another treatment regiment. It seemed I didn’t have much choice because the alternative was an outcome that wouldn’t work well for me. I feel like the past seven years have been an exercise in risk. Each treatment is a risk.
I’m risking my life in order to stay alive.
It’s hard. I get tired. And yet, I know I’m worth the risks I take. I want to be healthy and happy.
There is something missing. I’m so focused on staying well that I don’t have much time for anything else. The risks of sky diving or strolling by my lonesome through prime lion habitat don’t appeal to me. Developing a gambling addiction also isn’t the kind of risk I want.
On the one hand, I’m torn between not wanting to do anything, go anywhere, or see anyone who may put my health at risk. Parents who choose not to vaccinate their children for flu or preventable diseases could have life-threatening consequences for me. I must be over cautious. I can’t afford to take much risk in regards to my health. I am always going to base health decisions on scenarios with the lowest risk aligned with the greatest outcomes. Nothing is a sure thing. It all carries risk.
We all take risks in hopes of gaining a desired result.
But there’s the other hand. I don’t want to pass up chances to go out and have fun! I don’t want to put self-imposed limits on myself because I am unsure what I’m capable of achieving. I want to live with passion and purpose, to continue to learn and to lead, to change and to grow for the better.
There is some element of calculated risk in every choice we make. Some have bigger impacts than others. There are people who interpret risk as an opportunity, and others who see it as an assured failure. These are not the same people.
Taking risks has benefits. The most obvious, of course, is being rewarded with your goal. People who take risks are said to be more adaptable and they try more new things. They do not see failure as failure. Failure is an opportunity. They learn from these opportunities and bounce back more quickly compared to those who view unsuccessful risks as failures.
Risk-taking involves moving past fear in pursuit of what you want.
Fear prevents you from taking chances. Fear keeps you stuck. Life continues to happen if you choose to stay stuck – that’s still a choice. Taking a risk involves ignoring possible judgments from others. It may mean standing on your own, pushing past self-imposed boundaries, and doing something outside of your comfort zone. I don’t think it’s so much of a “no pain, no gain” philosophy. It’s more of an “if you always go with the flow, you never grow” mentality.
How might someone incorporate a little more risk into his or her life?
Pick a few from the list or come up with your own:
Explore a new town.
Ask for what you need.
Sign up for a ropes course.
Give someone new a chance.
Take a class to develop an interest.
Order something different at your usual restaurant.
Write or talk about emotions you find hard to process.
Ask more questions at your next medical appointment.
Respectfully disagree if you are misrepresented on an issue.
Share an honest opinion in a place where your view may not popular.
Make an appointment with a therapist if you know you need extra support.
Risk being rejected, turned down, the possibility of failure, or hearing NO.
There’s always sky diving if that’s really something you need to do.
Sometimes the biggest risk we take is not taking one.
Back to the osprey.
My head is submerged most of the time as I keep exposing my body to ongoing treatment. I’m definitely out of my comfort zone. The outcome has surprised me. It is one more thing I have come to accept. The big risk with treatment is it may stop working. That risk is worth it to stay healthy. I’ve learned I can take these risks even when they frighten me down to my bones.
The opportunities I have to be healthy are not out of reach.
Sanoviv Medical Institute is situated on the Baja Peninsula in Rosarito, Mexico. It’s built on a cliff looking out at the Pacific Ocean. Every day seems sunny. A lulling symphony of rolling and crashing waves repeats itself over and over. It’s a small hospital that specializes in functional medicine and both integrative and alternative treatments. Many guests visit for a health retreat. A smaller group of guests are patients with more serious health conditions. Research there focuses on how immunity can be supported at the cellular level in fighting disease and optimizing one’s best health. The physical, mind, and spirit are all important components of a healthy individual.
I left Wisconsin for Sanoviv almost as soon as my school year ended in 2016. My goals included strengthening my immunity, detoxing my body, and learning more successful ways to deal with stress. I was open to hearing what they recommended in terms of treating cancer. My oncologist at home was curious and doubted anything would interfere with my current protocol. I wouldn’t be missing any treatments at home by going. Neuropathy had taken a toll on my poor feet. I was also suffering from painful hand-foot syndrome. Of particular interest to me were the options for treating disease from a cellular level after disease had already happened. I signed up for a three-week cancer support program. If nothing else, I was off to Mexico in an idyllic setting and getting away from my life at home. It was even better if my health improved.
There are many moments from that trip etched away both in my memories and in a book that exists in a forever state of revision. I met people from as far away as Nigeria, Australia, and China, and as close to home as Chicago. My days were scheduled from 6 AM to about 7 PM. Some of it was not pleasant, but many parts of it were filled with beauty, purpose, and deep lessons. What I want to share briefly are my memories of the pelicans.
Pelicans flew along the coastline daily. I had never held any affection for these birds. I thought them big, ugly, and dirty looking. If a bird could be fishy, pelicans were fishy as well. My opinion transformed at Sanoviv watching these strong and graceful birds. I admired how they would pass by in single file while floating on an air current. It was like each bird was connected to another with an invisible string. They reminded me of bikers drafting behind a lead bike so as to block the wind and use less energy, an idea which bikers got from birds no less. At other times the pelicans arranged themselves in groups of four like in fighter jet formation. Wings tucked in for increased speed, yet they still managed to stay in unison with each other. These birds had an unspoken quiet beauty no matter how I saw them.
I had a very special pelican sighting on my last full day. I was sitting up in a special care area receiving IVs, looking out at the ocean in a bit of a daze, lost in thought. Far out on the hazy horizon, I saw a somewhat shapeless form. I wondered if they were pelicans, but they were too far away. Whatever it was resembled the v-shaped way a child draws birds flying in pictures. As the shapeless form drew closer, it moved off to the left and changed shaped, now reminding me more of a swarm of bees. From where I sat, I temporarily lost sight of the changing shape and figured that was the end of it.
But it was not. The shape was a small group of about four or five pelicans who were just hugging the coastline. Soon enough, they came back into view and flew by my window in a single file in one long, continuous silent flow. It was as if the pelicans were saying goodbye and purposely saluting me with their waving wings. It was a beautiful and peaceful moment that I will never forget.
Here is one of those perfect times where everything fits together magically. In the animal spirit world, pelicans symbolize regeneration and resourcefulness. I was at Sanoviv to heal and re-energize. The pelican population had dwindled in the past but presently has bounced back. Pelicans also represent resilience and determination. My spirit is filled with this same resilience and determination. My mindset is of one determined path just like the single line of the pelicans’ flight. A greater force was absolutely at work in bringing pelicans to me day after day after day. Signs are always there. I don’t believe it’s all a coincidence.
I didn’t get all the answers I wanted at Sanoviv. I arrived home feeling healthier than I had in a long time. My energy was better, my cholesterol was lower, and I felt happy. New scans were scheduled at home. These showed that returning to a more traditional form of chemotherapy was in my best interests. I would have had the same results if my scans had been scheduled before I went to Mexico. It’s interesting that one of the things I’m currently receiving today is what they suggested as my best option almost three years ago. The drug was not being used in the U.S. in exactly the same capacity as in Mexico, so I got a big fat NO from my oncologist at home. It was an FDA thing. Now it’s FDA approved.
I quickly made decisions and turned my life upside-down once more. Nothing was how I wanted it. Very little seemed the same. Life looks very different to me now. I have been resourceful, resilient, and determined, just like the pelican. Where everything isn’t perfect, I am still here. I am finding a way.
Lessons of resourcefulness, resilience, and determination are important for all of us. We all have stories where life hasn’t turned out as we planned. Many events are outside our control. We almost always think we have more control over events than we actually do. How we respond when life becomes hard is important. There is always a choice to respond positively or negatively. We all have opportunities to adapt, regroup, and come back to either try again or go in a new direction. We rest and give it another go, approaching challenges from new angles and perspectives. We all have more grit, strength, and determination than we think we do.
We are an awful lot like pelicans.
Many times we glide with grace.
Other times we need to be in fighter jet formation.
When have you needed to depend on resourcefulness, resilience, and determination?
Did the Impressionist Movement only give us artistic masterpieces and inspire other artists for years to come? Please note I use the word “only” loosely. My answer would be an emphatic NO. These artists also gave and continue to give us hope.
Vincent van Gogh may not initially stand out as a hopeful figure. He struggled with both his mental and physical health. His most famous paintings will always be his main contribution to the world. Starry Night is one of my favorites.
Today’s post combines my love for inspiring quotes with blogging. Lately, I’ve come across several quotes from Van Gogh that have blown me away. I do not know in what context he said them or really if they were significant to him at all. I tend to believe they were significant to him based upon their content and some of his paintings. These are some of his words that have inspired me.
“Be clearly aware of the stars and infinity on high. Then life seems almost enchanted after all.” ~ Vincent van Gogh
Life is enchanted. It’s easy to get wrapped up in its day-to-day minutia. There’s a repeating cycle of laundry, groceries, cleaning, yard work, and for me, medical appointments. The time I spend trying to live well with cancer feels so far away from noticing moments of infinity on high. There is always something health related even if it’s a little something. Daily medications are a good example. I see my port bumping out from my chest every day. My wig. These all are routine things but constant reminders of how my life is different. Making time to recognize and take in infinity is a must because it provides balance and perspective to life in my medical world.
It also sometimes feels like everyone is so focused on their own lives that moments where we interact with one another in meaningful ways are fleeting. Stores are understaffed. Customer service has all but disappeared in some businesses. Friends are in a rush. I treasure time with them. Social media, texts, and emojis replace conversations. Living life through social media is not very enchanting. I live in this world, too. Emojis are quick, effective, and sometimes highly amusing.
Looking up at the stars reminds me how big the universe is and that all my big problems are really small. People don’t make time to gaze at the stars and wonder anymore. Unless you live in the countryside far away from man-made light, getting to see a true starry night where shooting stars are common and a person can witness infinity on high is hard. City stars are not the same as country stars. I remember a geography course for graduate credit I took in Ecuador around the year 2000. It was in the jungles off of the Napo River where darkness closed in all around me where I saw the best starscape of my life. Utter darkness met me in every direction except upwards. Stars bedazzled the dark above. I only took them in for a few minutes because we were encouraged not to stay outside very long in the blackness for our own protection. Large cats stalked unseen and unheard in the night. Yet, for a few sacred moments, I saw the heavens like never before. It stays with me as a singular moment I’ll remember forever.
“I confess I do not know why, but looking at the stars always makes me dream.” ~ Vincent van Gogh
Dreams give us hope. We wish upon stars. Stars awe us. Songs are sung wondering what they are made of and comparing them to diamonds. My dad sang Twinkle Twinkle Little Star nightly to me. Starshine has always mesmerized me. If light from stars can travel trillions of miles to reach us, then can’t we also believe our dreams may come true? Can I wish to live? Can I wish to be completely healthy again? So often when we dream while sleeping, we don’t remember what we dreamt when we wake up. We can control what we dream when looking at stars and dream of what makes us happy.
Did Van Gogh say these statements before or after he painted his masterpiece? I don’t know. It doesn’t matter to me. It is more than enough that he said them because it makes me look at my favorite painting of his with more wonder and awe. I work hard to wonder and awe about life as much as possible as someone with metastatic breast cancer.
“If you hear a voice within you say you cannot paint, then by all means paint and that voice will be silenced.” ~ Vincent van Gogh
Am I a painter? No. I am confident there would be voices other than an inner voice confirming it. Even so, I do believe in doing the thing I think I can’t do. I do plenty of new things (new hikes, bike paths, foods, small risks). I do plenty of hard things (conflict, scans, side effects, funerals). I think Van Gogh was thinking about all the opportunities we don’t pursue because we convince ourselves we can’t for any number of reasons. The negative inner voice is quelled when I take a NO and turn it into a YES. Maybe this quote of his is telling me is I should give painting more of a try. I’m up for finger painting. The swirls of color would feel so Van Gogh.
“Close friends are truly life’s treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone.” ~ Vincent van Gogh
And . . .
“I wish they would take me as I am.” ~ Vincent van Gogh
Friends take us as we are. Those who don’t are not friends or worth the trouble. My need to belong has always caused me anxiety. There are still times when I feel left out. Like Vincent, I wish everyone would take me as I am. I wish I could be okay with it when some don’t. The people who don’t aren’t worth my time. I’m reminded I only need to belong to myself.
“I think that I still have it in my heart someday to paint a bookshop with the front yellow and pink in the evening…like a light in the midst of the darkness.” ~ Vincent van Gogh
Why a bookshop? He could have said a flower shop, a café, a market, a boutique, or any number of storefronts could be yellow and pink in the evening. Van Gogh also spoke of light. Reading is light. It gives joy, knowledge, and self-awareness. Reading can be a source of hope. Light is hope. Once again, I return to ideas of stars being the light in the midst of darkness. Books are like stars.Books shine light in the midst of darkness.
“Many people seem to think it foolish, even superstitious, to believe that the world could still change for the better. And it is true that in winter it is sometimes so bitingly cold that one is tempted to say, ‘What do I care if there is a summer; its warmth is no help to me now.’ Yes, evil often seems to surpass good. But then, in spite of us, and without our permission, there comes, at last, an end to the bitter frosts. One morning the wind turns, and there is a thaw. And so I must still have hope.” ~ Vincent van Gogh
Call me foolish for I am one of those people who believes that the world can still change for the better. There is more goodness in the world than badness. There will always be more heroes than villains.
Springs and summers follow the coldest winters. Having said that, spring sure took its sweet time this year.
I must have hope. I must maintain hope that treatments are discovered in time to save me, to save everyone with cancer. I believe in targeted therapies that are matched to patients who have a strong likelihood of responding well to those treatments. More research is needed to develop more of these. Research equals hope. Hope is my driving force and motivation in advocating for more research directed to treatments for advanced stage cancers. I do my best to stay strong and healthy which feeds my hope. I do what I can to financially support research for metastatic breast cancer. I still have hope.
Van Gogh has said he wanted his work to express “sincere human feeling.” He succeeded many times over and over again. Hope is a kind of feeling that warms, intensifies, and empowers. How he captured this quality in his art so that it still evokes such an emotional response over a hundred years later is a mystery to me. He had an extraordinary gift as an artist. His art and words continue to give hope.
Sixty is the new forty. Eighty is the new sixty. Cocktails infused with mushrooms are said to be all the rage. Small weekend trips may replace bigger vacations. I’ve heard iTunes is out. Everywhere I turn, I seem to hear about a new trend or way of thinking.
Here is one of my own: Exercise is the new sugar.
This may not be new knowledge for many, but it is for me. I have said before that I have sweet teeth instead of just one sweet tooth. I will always love sugar. I am trying to love it less these days. I would love it if I could crave exercise like I crave desserts. It works for a while and then my love affair with sugar returns. All I can do is to keep trying. This week I felt more successful in eliminating some of the refined sugar in my world.
Every day is an opportunity for a fresh start.
Exercise feeds us better than sugar for many reasons.
Exercise and Cognitive Benefits
Exercise can give you the same effects that sugar does in terms of a quick energy boost, only with exercise the effects are long-lasting and healthy. For example, exercise improves cognitive functioning. A person’s focus is sharper due to boosted energy caused by higher endorphin levels. Exercise also improves memory. Sugar does the opposite by increasing glucose levels that slow cognitive functioning. Have you ever noticed that your brain works better after exercise and the opposite is true with too much sugar?
Exercise and Endorphin Levels
There’s more about to say about those endorphin levels. Exercise increases endorphin levels. I’ve heard that your body craves exercise and movement. When your body moves a lot, it releases chemicals like endorphins, dopamine, and serotonin as a reward for your efforts. The result is you feel fantastic and have loads of energy. Sugar makes you feel good for a few moments but has addictive qualities that keep you craving it without any positive rewards. It’s a vicious cycle of falling levels of blood sugar that you need to literally keep feeding more sugar because your body feels lousy if it doesn’t get its sugar fix. In the long run (or even just a solid walk), exercise will make a person feel happier.
Exercise Combats Depression and Anxiety
Reduced depression and anxiety is another benefit of regular exercise. Both high-intensity aerobic exercise and low-intensity exercise like yoga have been found to reduce depression and anxiety.
Sugar also affects mood, but much differently than exercise. It has been correlated to higher levels of tension, depression, and anxiety. Personally, it’s so much easier to reach for cookies when I’m upset or sad than to go for a walk or work out. The cookie is instant gratification. I feel comforted for a few minutes. Working out takes longer for feeling better to kick in, but I feel like I’ve accomplished something good for myself when I’m done and feel more positive.
Exercise Lowers Disease Risk
Exercise decreases the risk of heart disease, diabetes, obesity, and certain types of cancers. It increases your chances of living longer. Of course it does! Sugar is associated with higher risks of health problems and diseases. There are many studies proving or denying sugar’s role in cancer formation or sugar fueling cancer. One seemingly reputable study seems to disprove another that seems as equally reputable. I’m not going to change anyone’s mind on what you already believe. I will, however, provide links to two sources where I often find research I tend to trust. Check out these articles at WebMD and the Mayo Clinic on sugar and cancer.
Is there a link? My opinion is a firm maybe. For me, I believe I’d be healthier if I consumed less sugar.
So Many Benefits
Exercise does a body good. It increases energy levels. Exercise is good for muscle and bones. Weight lifting is especially good for muscles and bones. It’s a must do as people age and lose muscle mass. As early as age 30, a person can lose 5% of muscle mass every ten years. Muscle atrophy happens fast for cancer patients because of decreased levels or lack of physical activity. It takes time to rebuild lost muscle mass.
Exercise can help with weight loss. Maintaining a healthy body weight is important at any age. Unfortunately, metabolism slows as a person ages, and regular exercise helps in those efforts to keep movement and activity a priority. Someone with cancer doesn’t need to do much to gain or lose weight. I’ve both put on weight and lost weight while maintaining the same exercise routine throughout many different cancer treatments. It’s been very frustrating to gain weight when I continued to work out, but I had the peace of mind that I was doing what I could to stay strong whatever number stared up at me from the bathroom scale. Exercise will change the way your body looks on the outside and the inside. Illness is harder to take hold in a healthy inner environment.
Sugar is good for making fat, fat, fat. Your liver makes and stores glucose depending on your body needs. Excess sugars that don’t get converted become fat. Too much refined sugar and high fructose corn syrup can attribute to liver disease. High fructose corn syrup is an unnatural sweetener made from cornstarch and found as the main ingredient in many sweet treats and foods. Foods high in sugar attribute to weight gain. That’s nothing new. I find that if I take the time the read the ingredient label listed on some of the sweets I crave before eating them that I get disgusted and can walk away. It’s a good hack.
Here is where I am: If sixty truly is the new forty, my chronological age suggests I should feel like I’m thirty. Newsflash – I don’t. I feel much older than I actually am due to what my body has endured. Cocktails with mushrooms are out for me because I cut out alcohol years before diagnosis. Alcohol ages a person. I also was just getting the hang of iTunes. I hope I can figure out whatever is next. I like the idea of weekend trips. I’m all in for those.
Exercise needs to be my new sugar.
Someone please remind me I believe this the next time I start to go a little crazy and feed my sugar cravings.
Empathy: the ability to understand and share feelings with another.
I recently read a blog written by an older woman who had a cancer scare that she had to deal with on her own. Her husband had passed away from cancer and she had had enough of it in her life. Her feelings are understandable. Two mammograms directed her to an ultrasound. The ultrasound triggered a biopsy. Her timeline read very much like mine did. One test after another was given with heightened urgency. Everything was fast tracked for this woman because the doctors were worried about the outcome of tests. She didn’t know how she would do cancer alone. Thankfully, this woman did not have breast cancer. Of course, I am glad it turned out this way for her.
She said her experience gave her empathy for people who are alone.
I’m sure this fellow writer is a lovely woman. Supporting someone through illness is hard. Losing him/her to that illness is excruciating. I do not diminish her pain because I know it’s real. I can empathize with her because I have lost people in my life. Cancer takes too much.
I am confused though why empathy needs to be directed toward people who are alone. Is aloneness somehow lesser than togetherness? Do my experiences when I spend time with friends, family, or a group of people give me empathy for people with partners? They do not. I may at times feel a little thankful to be back home and away from some of the stimulation and unwelcomed opinions, but I do not have empathy for people in a relationship. It sounds absurd when the shoe is on the other foot.
Somehow the comment rubbed me the wrong way. It seemed more bothersome to me that she felt empathy for people who are alone than for people who have cancer. I just kept scratching my head. It felt like pity or that someone was feeling sorry for me. I don’t want someone’s sorrow. Her remarks made me feel like she was saying, “Thank goodness I didn’t have cancer and the double whammy of being by myself!” This is more of an inner reflection than what was likely intended. I guess being on my own is a bit of a touchy subject for me, mainly of how I feel society perceives it as something less. I feel like I’m regularly defending my status. Sometimes I feel forgotten. Having cancer and being on my own really isn’t so hard. For one thing, I am reliant on myself and can organize appointments, etc. in a way that works best for me. I don’t have to check with others when I need to change my plans. I know how I feel and I don’t need to try to convince or explain those feelings to someone else. Sometimes it’s hard. Sometimes I wish I had a little more help and didn’t have to figure everything out. And I do have help. I have plenty of support. I ask for what I need. I feel connected to so many and have nurtured meaningful relationships. Technically, yes, I am doing cancer on my own, but I’m also not. It’s complicated.
“Empathy is simply listening, holding space, withholding judgment, emotionally connecting and communicating that incredibly healing message of ‘You’re not alone.’” ~ Brené Brown
Enjoy a short clip from YouTube where Brené Brown explains more about empathy.
I am not sure I’ve done all those things in my reaction to what I read. This post itself has been difficult for me to write. I have felt angry and questioned those feelings. However, it is completely okay, in fact it is fine, more than fine, for me to feel anger. I feel misrepresented. I feel there are indirect implications that are at my expense while someone else is expressing gratitude. Gratitude is not gratitude if someone (or another group) is put down in order for another individual to feel grateful. Nor is it empathy.
Empathy means a lot to a person whether they have someone at their side or they are on their own. Empathy is a universal yearning we all need and we all have the capacity to give. You are putting yourself in someone else’s shoes. It still isn’t quite the same because at the end of the day you put your own shoes back on. Still . . . there are moments when you almost get it. The important part is that you try to get it. I have beloved friends who try to get it.
One of my goals with this blog is to change perspectives on cancer, particularly advanced stage cancer. When I read something that feels a little, “Oh, that poor person has cancer and is alone,” I don’t like anything in that sentence because that feeling of pity permeates whatever sentiment is trying to be conveyed.
It doesn’t feel good.
What feels good is being welcomed to a group. I’d rather hear a compliment about something amazing I accomplished instead of a question on whether I went with anyone while achieving it. It feels good to be appreciated for my other qualities. It feels good to be included in things. If I’m unable to do something, then I may need to pass, but I appreciate being included. I like it when people remember things about me and respect my thoughts and opinions. I like it a lot when I’m not constantly asked about my health and truly treated like one of the gang. A small bit of thoughtfulness goes a long ways. It is how I believe we all can treat one another respectfully and compassionately.
Empathy in action is a lifestyle choice.
It’s possible I’m confusing empathy with sympathy, but I don’t think I am. In fact, I think some other people are. I certainly don’t want anyone’s sympathy or sorrow. It belittles and demeans if directed at me because I’m living with cancer. I want an even playing field. Don’t give me something or take something from me because of my health. Don’t give me something or take something from me because I’m single. I didn’t ask for your sorrow or pity. I’ve asked for your encouragement, support, and friendship. These are the things I offer.
There is something else you can give me: caramel. If someone were to offer me a caramel, I would not say no. Really good caramels are an entirely different story. It just might be an edible form of empathy.
Empathy is feeling as sad for a friend as if the event were happening to you. It’s understanding your friend is in a lot of emotional or physical pain. Empathy is understanding a perspective that’s the polar opposite of yours. Parents and teachers demonstrate empathy every time they know that something that isn’t a big deal at all really is a huge deal to a child. You show empathy to me when you understand that I may cancel plans, not feel one hundred percent, and don’t ask me a laundry list of questions. It means a lot to me when you share something hard in your life rather than me always explaining my latest hurdle that I try to embellish with a little humor thrown in for good measure.
Empathy is not making comments along the lines of “It’s too bad you had to get cancer.” Yeah, I just don’t know what I was thinking when I was in the cancer store. It isn’t empathetic to tell someone what he/she feels. Neither is telling someone what he/she needs to do to fix what is deemed not right (health, job, loss, etc.). Empathy is not putting someone down or saying things could be worse or that he/she should feel grateful. The words “at least” aren’t used at all. Please don’t tell me to live life to the fullest because tomorrow I could get hit by a bus. What many people don’t understand is that I’m running from that stupid bus every day. These things seem obvious to me, but I’ve heard them all. Perhaps the intention isn’t to show empathy, but to show something far less kind. I can’t figure it out.
And empathy definitely is not knowing what it might be like to have cancer and be alone because you had a scare and everything turned out just fine. You put your own shoes back on and walked on.
Empathy is something we all need and we all have the ability to give. At best, we understand what it’s like to be scared, perhaps terrified about our health and our future. We understand all the “what ifs” that run wild in our thoughts. We understand that disease can be a very lonely place to live. We can relate to one another that our upsetting news, event, or circumstance may be completely different from another person’s struggle, but that they are the same in that they are unsettling, frightening, and possibly very lonely feelings. We understand people are doing the best they can with what they have. Empathy connects us to one another. Through empathy we can share with and support one another.
I can empathize with those feelings.
I am not alone.
You are not alone either.
Where have you seen empathy alive and well in your life?
How do you best handle situations when someone is not empathetic?
I was half listening to a show on TV many, many months back, and whatever I was watching touched on the importance of survivorship plans for cancer patients. I shifted my focus more intently to find out how these differed from what I thought of as a treatment plan. The specific TV segment ended before it began, and it never went into enough depth to even explain what a survivorship plan was other than a detailed medical plan for continued care and survival. To me, this translated that a survivorship plan was merely an extended treatment plan.
I took to the internet and survivorship plans did seem to have a very medical tilt to them. These plans looked great in that they contained all your pertinent information about your past treatments and planning for future care in one spot. They were very similar to my health journal that I take for medical office visits. For me, a drawback is they are narrow in scope where only the medical aspects of continued health are part of the plan. They are forms.
Survivorship can’t be condensed into a form.
At the beginning of treatment, I was given a piece of paper with blanks for me to fill in with all the particulars about diagnosis, surgeries, treatments, beginning and end dates, etc. It was a fine centralized place for information at a time when life suddenly was more overwhelming than ever, but rather limited for the long haul. It remained a good reference tool.
Some survivorship plans out there are better than others. One of the better ones I’ve found comes from the Minnesota Cancer Alliance, created by Karen Karls, a survivor from Grand Rapids, Minnesota. In addition to giving space for a historical documentation of dates and treatments, it provides great questions and things to think about for follow-up care. It looks like an awesome resource. The actual survivorship plan can be found here. Pick and choose what may work for your needs since it is lengthy.
I would add to this resource additional space or pages for any continued treatments needed if you are metastatic and have need for an ongoing list that can still be somewhat at a glance to provide an overall picture. It would have medicines, beginning/ending dates, side effects, results, and an area for why you switched or for additional notes. I use a spreadsheet to accomplish this for my needs.
I want a healing plan. In my mind, a healing plan combines the medical aspects of a survivorship plan (treatment plan) and the complementary pieces added to ongoing medical plans for complete care. A healing plan encompasses all of it. As a survivor, you are the executive in charge of connecting all the dots between your oncologist, primary care provider, naturopaths, acupuncturist, massage therapist, mental health provider, and any other therapies or services you seek for better health. This sounds like the job of a patient navigator, but the role of the patient navigator stays within an integrative health care network. He or she can put you in touch with approved services within a network. As soon as you want to seek something complementary outside of the system, you are on your own. Incidentally, they also haven’t been too keen on hearing how I think a patient navigator differs from a survivor navigator, probably because it opens up too many potential liability issues. It makes me mad the kinds of wrenches that get thrown in the way of someone’s best health.
A survivor navigator is hereby decreed a new position.
It is one of great worth for which you will receive no monetary pay. You are self-employed and get all the benefits from your new position. Maybe someday health care will see the wisdom of multiple services (even if they are outside the system) working in tandem with efficient communication and patient information sharing. Research should be doing A LOT more sharing of their discoveries and resources to find a cure. It only seems logical. What is crucial to remember as your own survivor navigator is that you must communicate important details of your healing plan to relevant parties. For example, your oncologist should know if you’re adding any new supplements to your health regiment because they may interact with treatments or other prescriptions.
They also may not. I have heard “we don’t have evidence for how these herbal supplements interact with drug x” a couple of times.
I try not to roll my eyes too loudly.
Translated, it means “there isn’t any evidence because big pharma will never sponsor such a study since it may be discovered something cheaper and more available works even better than drug x.”
I doubt there will ever be any such studies. I do not have medical training and am not making medical claims. The above are my own opinions which I openly share with my medical team. You need to do your research, have relevant conversations, and make the decision that you feel is best for you. I am not a doctor.
I do know some of the supplements I take, many of which have been suggested by my oncologist, have helped my body feel better and move more effectively.
Maybe it’s too pie in the sky to think that each patient can have a personal assistant to schedule every need the patient has and keep it all straight. Call me a dreamer. I’d love to have a person like that assigned to me, but it looks like I am that person and I’m already here doing the job. Right now it’s a seed idea that has the potential to grow into something real for others. Somehow this person has to have reach outside of a provider network to connect patients to complementary resources without taking on potential risks in so doing.
Health care is better when people work together.
In education, students with special education needs have what is known as an Individualized Education Plan, or IEP for short. Every learner has different needs. The goal is for targeted instruction to each individual student. In theory, all students have an IEP, most being informal and not legally binding like an official IEP. A student receives his/her best education when teachers work together as a team for a specific learning outcome. A healing plan is much like an IEP in that it’s individualized to the individual.
People are working together for a specific health outcome.
Think of it as a personal Individualized Health Plan, or IHP to stick with the acronym pattern.
I have a lot of people and strategies in my corner supporting my best health. So much is crammed into that corner that it’s spreading out and filling other spaces and other corners. For me, this is a good thing because of the many options it provides at my disposal. I have developed a strength as an advocate for my own health that continues to evolve. If I relied solely on the medical realm, I would have limited myself to a very narrow scope of what is available. Components like a naturopath, acupuncture, and energy work receive a very luke warm reception so I steer clear of those when having specific medical discussions. Fitness, nutrition, meditation, and science-backed inquiries get more attention. People accept and believe different things are effective. Your healing plan will be individualized and fluid, just like you. Mine sure has changed over time. Use your best judgment and you will develop one that feels right for you.
A brief note: My last few posts have focused more on the medical side of my life as a cancer patient. I’ve chosen my words deliberately and have tried to convey that I support my doctors, nurses, and everyone on my team that cares for me. I fully support them. I have not expressed myself well enough if I have fallen short in conveying that message. I have also chosen my words carefully to make my voice heard as a patient. Being an involved patient doesn’t mean I am against the medical profession. Sure, there are things I would like to see change. It’s a huge motivator as I write specific posts. The idea that doctors and patients work together is key to all of it. I strive to work with them and find the best way for that to happen. An individualized health plan is part of what can help everyone work together. Health care is better when everyone involved works together.
What do you feel are the most important parts of your individualized health plan?
In what ways have you advocated for yourself in terms of health or something else?
An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.
I’m feeling fired up today about many, many things related to health care.
Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.
A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.
Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
As a patient, you are entitled to privacy regarding your medical care and records.
You have the right to quality care and treatment consistent with available resources and standards of treatment.
You have a right to refuse treatment and be informed about the consequences of that decision.
You have the right to care and treatment in a safe environment.
Another big right is that you have the right to considerate and respectful care.
I want to add two additional patient rights.
One: The right to demand more research and more effective treatments for advance stage cancer.
It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.
I think this is a great way to create a direct line to the front line.
It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.
Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.
Two: The right to have more equality and power with pharmaceutical and drug companies.
I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.
I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.
Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk. The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.
Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.
Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.
Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.
It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.
A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.
How do you feel you are a part of your team for your health?
Are there any other rights you’d like to add to your personal list of patient rights?