Cancer Perspectives

Years back, I had a student I will call Paul. Paul greeted me cheerfully every morning and most days made me smile easily. He was a chatterbox, an average student, and enjoyed being at school. He was there for the social aspects and needed redirection to work independently, but he’d always tell me learning was very important. He struck me as a happy child because he could find the bright side in just about anything.

At some point during that school year, Paul lost his enthusiasm. School wasn’t where he wanted to be. He was unusually quiet and wouldn’t open up. There had been a few more behavior issues surfacing. It was a puzzle until the morning I logged on to my school email and found an angry email from his mother letting me know Paul had been hit in the face during class. She included the principal in the email as well, citing concerns her son was being bullied at school both in class and on the playground.

Had Paul been hit in the face in class? Sadly, yes. I was there when it happened and already had it processed and worked through with both boys. Enter a boy I’ll call Ali. Ali had poor impulse control, and like Paul, could be easily distracted. Now, it doesn’t take long for mutual distractors to connect with one another in whatever ways they will. What was interesting in this situation was that Paul had positioned himself right behind Ali during a cooperative class activity. He was holding one of Ali’s arms behind his back and wouldn’t let go. Paul also left that part out of his story when he reported the story to his mother.

So, Ali slugged him.

Paul let go.

Every player had a different perspective of these events. Paul’s mom was seeing a pattern that worried her and she was advocating for her son. She knew if she threw the word bullied into the conversation that it would have considerable traction. It always does whether it is an accurate description of events or not. I wonder what she would have thought if I suggested Paul actually had bullied Ali because of repetitive issues between the boys. I didn’t ask. No need to stir that pot.

The principal had more of a three-tiered perspective: support for the child, positive communication with the parent, and supporting how I responded to what happened in the classroom. He knew of the other incidents that involved playground events and some reoccurring students.

Ali’s perspective was reactive. He often didn’t think before he did something. I imagine he was thinking something along the lines of, “Why is Paul grabbing me? It’s my turn in the game. Let go!” Pow. Problem solved.

Paul had a couple points of view. He knew what would get a response from home, and he genuinely was not feeling accepted by peers. He wanted friendships, but ironically had unsuccessful interactions which achieved the exact opposite of what he intended. He felt picked on. I never really learned what happened on the playground, but I’m sure it factored into his feelings. In his mind, all these things together made him feel bullied.

My teacher perspective was one where I was just baffled by Paul’s motivation to grab Ali’s arm like he did in the first place. I was equally baffled with Ali. Who just hauls off and hits someone? I guess someone who feels like they are being restrained for no reason.

Reality is often intangible. Each of us has our own reality as we perceive it, each through our own lens. The same event affects people differently.

The same is true with cancer. Cancer affects people differently. There is no right. Each person perceives cancer from their own viewpoint. Those who are back to whatever normal is after an early stage cancer diagnosis and treatment see cancer very differently from those with metastatic cancer. Some with metastatic cancer call themselves survivors, thrivers, metsers, cancer havers, lifers, or warriors. It comes down to the individual. Caregivers, family, oncologists, and nurses all offer their own unique perspectives. Media in my opinion gets it wrong more than they get it right because their goals for a story don’t often match mine. Breast Cancer Awareness Month and the repetitive emphasis on pink and awareness rather than research and action is a perfect example.

How others with Stage IV cancer view those of us who have survived longer than the 2-3 year median is another area of differing perspectives. I read something recently where someone felt that those who shared longer survival times were being cruel to those who weren’t likely to experience more years. I’ll hit nine years in a few months. I see those who share longer survival as symbols of hope. I look to those who have 11, 15, and over 20 years living with metastatic disease.

It’s all a crapshoot. It all sucks. I recognize it may be difficult to read news when you may not be doing well. Sometimes it’s rough to read news of stable scans or NEAD when mine are not. It can be hard for me to share news when things are going well because I know others don’t have those results. I usually don’t share much news publicly. And yet, I don’t see sharing such news as being cruel. Good news is always good news.

One viewpoint I have a tough time accepting is the natural or alternative approaches to treating cancer. Modern medicine is always going to be my frontline plan. I do believe in complementary therapies to support my health. There was someone early on in my diagnosis who reminded me more than once that I chose the chemo route to treat cancer. Did she think I didn’t know? What exactly was her point? I was well aware that I chose science over crazy. I may eat my kale and turmeric, but I’m of the opinion I need treatments with more medical substance. I’m here because of them.

There are those with cancer who may want to talk about how things are going and medical results in great detail. Some people are an open book. A patient (total stranger) in the treatment waiting area once told me all about his medical treatment plan and then proceeded to stand up and almost take off his t-shirt to show me his burns from radiation. I hadn’t asked, couldn’t stop him, and got myself an eyeful of awful. He was all about sharing. To each their own.

Over the years of living with metastatic breast cancer, it has been especially challenging not to let negative comments from family members and well-meaning friends fester away and gnaw at me. Some people at times are just awkward with me. How could the same person ask repeatedly if I missed teaching? Maybe it was dementia or just awkwardness on their part. My “prognosis” used to be brought up often by another. A friend or two has become distant. Look, I’m living and out in the world accomplishing things I wouldn’t be if I were working full time. It strikes me as really uncaring that others try to stick me in a place they think I am or remind me of what a textbook has to say about me. Occasionally, someone “reminds” me that I have cancer. I’m not going to forget. It’s with me every day.

The Blind Men and the Elephant is an Indian fable about six blind men who encountered an elephant but did not know what an elephant was. They saw it by feeling it with their hands. Each felt a different part of it. One thought the elephant was like a pillar by feeling its strong leg. Another disagreed and thought the elephant was like a rope because he had touched its tail. The third, who had touched the elephant’s trunk, insisted an elephant was more like a thick branch of a tree. The man who had felt the elephant’s ear thought an elephant was like a big hand fan. The fifth blind man thought an elephant was like a big wall from touching its belly, and the last, who had touched the elephant’s tusk, said an elephant was like a solid pipe. All of the men insisted he was right and they loudly argued.

Along came the king who didn’t like all the noise. He told the blind men they all had different experiences but were all right. After the men understood the true nature of an elephant, the arguments ended, and the elephant transported the men away.

We are so like the blind men when we let only our experiences form our perspectives. And of course, how could it be any other way? What is important to keep in mind with the parable and with life is that people approach situations from different perspectives based on different versions of reality. Cancer is a pretty big whopping elephant and gets perceived in countless ways.

I may not agree with how everyone chooses to share or specific ideas about cancer. I know not everyone agrees with all of my thoughts. That’s okay. I believe we still can support one another and can learn from each other. There is room for all of us at the table to share our experiences.

And I won’t slug anyone if we disagree.

What I Did Last Summer

Spring was lost.

Summer was lost.

Uneventful days passed.

Life inched by like a snail going nowhere.

COVID has consumed six months now.

Six months gone.

Mostly alone.

Gone forever.

And yet I look at the good.

I can’t help it.

Good is always around.

Also forever.

One place I found it was in flowers.

Repetitive days of solitude

And safeness

Drew me to nature.

My camera my paintbrush.

Flowers my canvas.

So many patterns and colors

From 6 inches away.

Wonder

Beauty

Life

Joy

Summer was not lost after all.

A world covered in flowers is not only beautiful but a reassuring constant.

These thoughts formed as I thought about what I did over summer. There were a couple momentous events that I celebrated because birthdays and related plans still happen in pandemics. Most days were quiet. There was a lot of sameness and not much to shout about. I viewed medical appointments as chances to socialize a bit. My trips to the grocery store twice a month held high excitement.

My photos visually reflect what I did last summer whether I puttered about my back yard, paused to take a photo while walking in the neighborhood, or found myself in a favorite nature setting.

Patterns and colors in flowers captivated me this summer.
Everything about this makes me feel happy. The bright vibrant color. The layered petals. The petals slowly unfurling and still emerging from the center. It is a world in itself.
Floating flower art feels very zen.
Blues and purples are a soothing combination.
These colors remind me of a sunset. I marveled at several of these and found all were slightly different, just like every sunset.
This succulent reminded me of glazed pottery. I’m pretty sure it follows a Fibonacci sequence.
Bee balm attracts so much life. Watching its visitors has brought many happy moments to my summer.
Every flower has a story. I am one flower sharing mine.

Tracks and Visions

Winter does not have to be a cold dormant time. Winter can be a time where you see your “tracks” more easily in the sense you can see where you have been. You can also have a vision for where you’re heading.

Cross-country skiing lets me see what is both physically behind and ahead of me. It has been more challenging to do the last couple of years more due to climate change than anything health oriented. There hasn’t been enough snow. If there was enough snow, then the Wisconsin temperatures were too frigid to endure outdoor recreational winter fun. My schedule factors into plans as well. A lot has to align for me to make skiing happen. Finally, one of those aligned days happened. Even though the snow wasn’t perfect, there was what I hoped would be just enough to make it possible. Who knew when another opportunity would come along? I gathered my gear and made the short drive to the arboretum and ventured out.

My intentions on this day were to enjoy being outside getting fresh air and see how I did on skis. I went slower than a turtle and never got the gliding motion going that I love feeling on skis. Had a turtle come along, it would have easily beaten me. I managed to stay upright the entire time and that thrilled me, especially since there were wobbly moments where I momentarily lost my balance and quickly caught myself. I noticed these times were when I looked up or turned my head to the side to see something. Well, I decided not to make those movements and just stay super focused on my careful and deliberate movements forward.

It was as I reversed the route and was heading back to my starting point that I realized I had a wonderful opportunity to work on balance in action. Very slowly, I began to work on turning my head from left to right while continuing to ski forward. Then I would intentionally move my head up to look at the treetops and back down so my eyes were straight ahead. I did it over and over again and built up my confidence while I worked on making my balance better.

Being out there also made me think a lot about life balance. My body needs to move and my spirit needs to have moments in nature in order for me to feel well. I am in a very fortunate position where I don’t need to work around a work schedule. I have created new work and purpose for myself. I am now in control of where and how I want to direct that meaningful work. My life is more balanced than it used to be.

Last week I got out skiing again. I am still astonishingly slow and was passed by an older gentleman. Somehow he passed me twice. Slow and steady worked well for me. I stayed out for over an hour which was twice as long as I planned due to a decision I made to go a little farther which turned out to be much farther. I had plenty of time to think about how my tracks showed me where I’ve been and the vision I have for where I want to go.

A few of my thoughts included:

Looking back to see where I’ve been has its merits. I see my accomplishments. I can linger over happy memories. I also see if anyone is trying to pass me for a third time! However, the direction I want to go is forward so I need to focus on the path ahead of me and notice where it branches out.

I realized I looked down at my feet an awful lot to ensure I wasn’t hitting an icy patch. It seemed like I needed my gaze downward to keep my bearings. I can be just as safe looking up and looking forward, if not safer. There’s more to see. There is trust involved. I plan to continue looking forward.

One of the reasons I like cross-country skiing is because I don’t have to go down hills. I enjoyed downhill skiing in younger days. Not sure how that would work for me now. Cross-country skiing can still have hilly segments. I purposely choose flat routes. There inevitably are stretches where the trail slopes downward ever so slightly so that you take a break and coast. I usually fight these sections and actively attempt to slow myself down so that I don’t lose my balance and fall. It’s more work to fight these changes than to coast. This time I gave myself over to coasting. Less work felt good. I was safe and had nothing to fear. I plan to work smarter, not harder. Coasting may enable me to pick up speed and give me more energy.

Changing my route allows me to explore a new path. I thought I knew how I was changing my route but I miscalculated the distance. Life is exactly like this. There are miscalculations. None of us really knows how long we’ll stay on our current path before it changes. I love seeing paths turn ahead of me. It adds a little mystery to my walk, hike, or whatever. The path is revealed slowly as I move along.

I am about to mark my eighth year living with metastatic breast cancer. I can reflect on these years by comparing them to time on a ski trail. There have been paths where I’ve been wobbly. I’ve been sprawled out flat on my back hoping someone would happen by to help me up when I couldn’t get myself situated to do it on my own. I figured it out eventually. I’ve never liked relying on someone else to fix things for me that I should be able to manage on my own. Some paths have been straight, flat, and easy to navigate. It was easier to coast in younger days. There have been twists and turns I didn’t see coming. I didn’t know where I was going but it was clear I’d be on a specific route longer than I had planned and I had to keep moving forward. Sometimes I could backtrack and retrace my route. Sometimes I hoped I was closer to finishing and turning back would make things longer and harder. I can’t go back and retrace my steps with cancer. My hope is that the bit around the next turn I can’t see is a beautiful part of the trail that works well for me.

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A favorite trail in a favorite place

Ralph Waldo Emerson said it best – “What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.”

My past and future, those tracks and visions, are influenced by my inner voice. What I see is dictated by how I interpret what I see and experience. My tracks, vision, and inner voice are all tied together into one intricately woven path leading forward. Onward!

Top Character Strengths

“Our ability to handle life’s challenges is a measure of our strength of character.” ~ Les Brown

Life is challenging. Some folks seem to have more challenges than others, but we all have challenges. A lot has been thrown at me thus far that I’d rather not have dealt with at all. I’d like to think I have continued to grow for the better through challenging times. Chalk it up to an inherent teacher trait that I always need to learn something from situations, regardless of whether the situations are good or bad. I’ve become more hopeful, determined, and resilient over the past several years. I am grateful for these gifts and the opportunities I have had to use these strengths. These are amazing traits, but I am not sure I would have chosen them as main character strengths before my cancer diagnosis.

I would have put kindness, positivity, and a good sense of humor at the top of my list.

Being kind is what I try to show the world and what I expect from others. Our world needs more kindness. I can find a positive perspective in just about anything. Even if something sucks for me, I recognize it as truth and allow myself to be there for a while. My sense of humor has brought a smile to my face when I’ve needed it.

Not everyone gets my jokes.

How we see ourselves, how others see us, and how we truly are may all be the same or different. It’s natural to see ourselves how we want to be seen. Circumstances factor into how we are seen by others. I believe we are a mix of so many traits that are fluid and dependent on what is needed. My virtuous side may shine in the public eye, but I may need to channel my stealth if I were to plan the next great diamond heist. Luckily, I have more of an attraction to pearls. My theme here today is on character strengths rather than weaknesses, so I’m determined to stay on topic and not focus on unflattering qualities. I have those like we all do.

I stumbled across research on character strengths while doing some reading about happiness. A company that researches character strengths referred people to their website for anyone interested in identifying their top character strengths. The idea is to know your strengths so you can use them effectively. It takes about fifteen minutes to rate yourself on how much you fit various descriptions. Directions include responding to how you feel you are and not how you want to be, although I’m sure there is personal bias involved. How could there not be?

According to their research, they assert that people who use their strengths are 18 times more likely to be flourishing and happier than those who don’t know or use their strengths. Flourishing! I wanted to find out what they deemed my strengths and see if I agreed since I want to flourish as much as possible.

According to results, my top three character strengths are perspective, spirituality, and humor.

Perspective

The ability to see the bigger picture and what is best for a situation was my top strength. I can see the big picture but am also detailed oriented. Some describe this as seeing the forest and the trees. I think being able to think mindfully about situations has helped me consider the advantages and disadvantages of a situation. Having made my share of mistakes and learning from them also has developed a sense of knowing that comes with looking at different viewpoints. Having different ways of looking at the world helps make sense of it.

Seeing alternate points of view is important. I can apply this to my own life in a way where I listen carefully and weigh all possible sides. It’s harder to do when there are heavy health decisions to be made. The best options moving forward may involve hard parts but still be in my best interests. How will treatment options and side effects affect my quality of life? What are the chances of success? Am I a good match for a proposed treatment? Why is it being suggested for me? I make a lot of pro and con lists. I weigh some factors more than others. I look at the facts I have. I consider my feelings. I ask the people I trust for input and their valued perspective.

Careful listening is needed to understand and value perspectives different from yours. Doing research so I can make informed decisions is important to me. Asking questions fits here too. I won’t discount intuition because even after all the research has been gathered and all the questions have been asked, there is a feeling about what the right choice is for me.

Spirituality

Spirituality was my second highest strength. It reflects a sense of meaning and purpose in the universe. It’s a search for the sacred whether that’s secular or nonsecular.

I was surprised this strength ranked so highly. I used to identify very strongly with spiritual ideology and concepts around faith. It’s been shaken. I don’t believe having cancer has shaken it as much as the rigidity of the religion that I’m a member. I question more and I believe questioning is good. I am not going to narrow the sphere of spirituality to religion. Spirit to me has become a much larger force and a person’s chosen religion or choice not to be religious doesn’t determine a person’s faith, spirit, or worth. There is no one way for everyone to be spiritual. We each find our own way.

How can I use spirituality as a strength living with cancer? I know I am more than this body where I currently reside. My views on the afterlife have evolved. I have pondered a great deal about the meaning of life that influence my choices and give me peace. There is some sort of transcendence at work that allows me to connect to something greater. I have a peace journal. I meditate. I pray. I engage in discussions about faith with close friends. I feel a connection to the universe when I’m in nature.

I can still talk to my parents and feel their presence. I talk to God daily. I let myself be quiet and I listen to the stillness.

Humor

I’ve always found situations amusing. Sometimes not at the time, but I could laugh at them later. It seems I can make other people laugh even if it’s not my intention. I will choose a comedy over a drama. Children and their natural shenanigans are gold mines for humor. Stephen Colbert and his writers craft a masterpiece nightly with his monologue that has made the past couple of years more bearable. I have become a fan of good political satire. I love being around people who can make me laugh. It’s a quality I look for in strong relationships.

How can I further use my sense of humor as I live with cancer? It’s very useful in dealing with stressful situations. Cancer is stressful. Seeing the lighter side in a situation reduces stress. A person living with metastatic breast cancer faces a lot of adversity ranging from medical obstacles, social relationships, and navigating through it all off road because it is a wilderness. A good sense of humor has the potential for transforming something negative into something positive because of a shift in perspective. My former oncologist and I had such a good chuckle over a theory a radiologist gave about why I had severe muscle cramping to the point of hospitalization. His theory was I wasn’t moving around enough in the MRI tube. It is just absurd! There isn’t ROOM to move around in there and you need to stay motionless for the imaging to be accurate. The radiologist knows a person can’t move around in there. I shared the story with my oncologist and he said, “What are you supposed to do – jog around in there?” The stupidity behind this utterly false theory is astounding, but the image of jogging in an MRI tube cracks me up every time. Being in good humor doesn’t necessarily mean you are laughing all the time. It’s more of an outlook you carry with you.

How a person handles life’s challenges certainly is an indicator of their character. I will strive to handle mine with a perspective that affords me meaning, a sense of humor, kindness, positivity, and a dash of grace if I can get it.

 

Consider responding:

What do you feel are your top character strengths?

How do you apply your strengths so you flourish and make the most of them?

Click here (viacharacter.org) if you have an interest in completing the survey for yourself to learn about your top character strengths. It’s free to take and get results. I am not affiliated with them in any manner.

Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Reclaiming October

Breast Cancer Awareness Month is almost here. An inundation of pink will accompany promises that a cure is just around the corner and that change is imminent. Everywhere you go, there will likely be some campaign to raise awareness with the belief that a contribution to the cause will go to research that will find a cure. It all will be so happy and upbeat because pink is pretty. Some will reminisce and post photos of life going through treatment and compare before and after photos. The media will highlight survivor stories.

Fine.

Really.

I am not trying to take away from someone else’s survival. There is room for everyone. I am trying to shift the focus and include a greater focus on metastatic breast cancer.

I know I am beautiful but I don’t post before and after photos because I still wear my wig. There will never be after photos for me because I will always be in treatment. I do hope to ditch the wig. I don’t think there is a lot that’s pretty about what I go through month-to-month, or even week-to-week. October is a tough month. It’s hard like a brick wall.

But I’m a wrecking ball.

Here I come.

I am gearing up for one hell of an October.

I’m taking the month back and making it about metastatic breast cancer. It’s a golden opportunity to put MBC in the spotlight.

I am renaming it Metastatic Breast Cancer Action Month.

#ActionMBC

Throughout October (and beyond), I will be taking action directed toward change. I will tweet, post, blog, and talk about the facts of MBC in attempts to create visibility and push for more attention, funds, and research to be directed toward this group of the breast cancer population. I’ll write letters and talk to anyone who will listen.

It’s vital I reach people who know little about this world. Many do think awareness is the way to end cancer. I disagree. Giving people accurate information about metastatic breast cancer is part of recruiting support for needed change. Facts on MBC will become tweets and posts. A few unsolicited opinions may be inserted. I’ll also display them on public bulletin boards and maybe even plaster them on bathroom stall doors to provide some meaningful literature in all of the finest restrooms I frequent. Yes, I did just write that. A person might as well spend a couple of minutes learning while occupied with bathroom business.

It amazes me how people don’t know some of the things I thought they would. They may even work in the healthcare industry and still be somewhat uninformed about the effects of metastatic breast cancer. They may be survivors and completely oblivious about the chances of recurrence. I don’t understand everything there is to understand about cancer. It’s my opinion the general public doesn’t have accurate information on secondary cancer and I would like to reach this audience.

Preaching to the choir doesn’t do much. Providing information to people who don’t even sing has the potential for change.

I want to provide information this month that:

  • Metastatic breast cancer is with those of us who have it for the rest of our lives. We will still have it after October.
  • No one has done anything to get cancer. It affects people of all ages, races, sizes, education levels, languages, and incomes.
  • People who have gone five years being free from cancer after treatment ends can still have a recurrence and develop metastatic cancer.
  • Metastatic cancer kills people.
  • 10% of patients already are Stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • It’s projected that 116 people per day will die from metastatic breast cancer in the U.S. in 2019. Five of those who die each day will be men.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits.
  • People who have any type of cancer, or have had cancer, or are labeled as having a pre-existing condition, deserve health coverage from insurance companies. Affordable health insurance is a basic human right.
  • Awareness and prevention programs have done nothing to lower the number of deaths from MBC.
  • We need more research, more treatment options, and more effective treatments for metastatic breast cancer.

We need more attention from others outside of the metastatic breast cancer community. I often feel like we are shouting from the rooftops from only our own village. It takes more than a village. It’s going to take all the villages.

I regularly hear that we need more research devoted to metastatic breast cancer. It’s often my own voice I hear saying it. I’m not just talking the talk, but now I’m walking the walk. A few months back I created a fundraiser through the UW Carbone Cancer Center where I receive treatment.

Click here to access my fundraising page. My plan is to devote a separate post about my goals for this at the end of the month. I encourage you to make a small donation and feel nifty with me. You’ll see what I mean after viewing my page. Don’t delay. Don’t put it on your “To Do” list. Once it’s done, it is a proud part of your “Ta-Dah” list. I am grateful for your support.

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Click here to watch a video about UW Carbone.

I am committed to raising money for research.

I am committed to making my voice heard.

I am committed to doing more.

I have plans to speak at several places in the community. My story will be displayed in a couple of businesses in October. I’m busy networking to keep the momentum going after October and for the better part of 2020. All this takes me quite firmly out of my comfort zone. My health often causes me discomfort anyway, so I might as well find ways to show it I am still the boss of me. I can wrestle and rumble with it and make it uncomfortable with me.

 

Please consider responding:

  • Please chime in with other MBC needs that I haven’t mentioned.
  • How can you use your platform and advocate for change this month?

Kayaking as Peace and Healing

Sharing your story is one way to heal. Shared stories create healing both for the storyteller and reader. I wrote about my first kayaking experience in 2013 after I returned home from spending time at a breast cancer recovery retreat on Madeline Island. Madeline Island is one of the Apostle Islands in Lake Superior.

It was a cold and rainy day in July that many would want to forget. It became a story I wanted to share because of the healing properties of being on the water. The experience taught me I could do anything and be stronger because of the experience.

I was delighted when I discovered the piece had been passed on to a regional magazine and published. Well, mostly delighted. I would have appreciated it even more had the intermediary party involved told me it was in print.

At any rate, it was shared, and it may have contributed in some small way to someone else’s healing that read it. I hope by sharing this personal narrative again that it may be helpful to someone.

Kayaking: A Metaphor for Peace and Healing

Breast cancer survivors don’t understand the word no. We’ve heard it too many times. The cold gray sky said to stay inside. A steady mist fell. It definitely was not the warm, sunny, end of July day everyone expected while at our breast cancer recovery retreat. It was, however, our kayaking day on Lake Superior. The weather would not stop us – instead it would make us stronger. Everyone agreed to go. Each of us had faced, or still faced in my case, cancer and screamed NO at it with all our might. A little rain would not interfere with our plans.

Kayaking was a structured activity and part of our learning at the retreat. To be part of nature. To do something physical. To do something spiritual. To listen to the water and to listen to ourselves. Kayaking encompassed all these and more.

Lake Superior is a place of story and spirit, along with the islands that make up the Apostle Islands. Our guide took us to a beautiful inlet on Madeline Island that eventually led out to the much larger lake. The tranquility was beautiful even on a rainy cold day. The inlet protected us from the strong wind and rocking waves. Each of us was about to write more of our own personal cancer story upon the Lake Superior water.

A steady stillness surrounds you when you’re in your kayak and on the water. The oar slices through the water silently and your kayak soundlessly skims across the top. You are submerged but not submerged – on the surface but not on the surface. A kayak puts you in the moment more than any other activity I can imagine.

There is a peaceful oneness with the water. The rhythm of paddling along with the inhaling and exhaling of all that fresh air creates a meditative state.

Kayaking changes perspective. You see everything from the middle, not from the shore. You are almost eye level with the water. You have control over where your kayak ventures to and at what pace. There is empowerment in a kayak.

Kayaking heals. Cancer, surgeries, treatments, and medications take a toll on bodies and spirits. Fear creeps in. It settles in and eats away at your hope. Yet, water has its own purification and renewal powers. Water replaces fear with hope and life.

Water trickled down from the oar I held and onto my legs. The mist coming down, sideways, from every direction cleansed spirits. Kayaking connected the healing aspects of physical, emotional, and spiritual together. Every stroke made me feel more powerful and farther away from cancer.

When there is a storm, kayakers are supposed to raft up . . . to come together and hold on to the ropes of all the kayaks and ride out the storm. You don’t try to paddle anywhere. You just stay together, all in a tight bunch. The point is to make the group look bigger for large boats to see you and to rescue you.

However, there’s another point, too. In life’s struggles, don’t you want to raft up so you can help one another through the storms? You do. The concrete becomes another part of the metaphor.

After about an hour, our group came together to assess our progress and make decisions. One kayak was filling up with water and in constant need of the hand pump. The mist had changed into rain. You could see by the wind moving it slantways. We headed back in silence to reflect on our experience.

Kayaking proved to me once again I could conquer my fears. Not just conquer, but excel, in this new experience. Every inch of me was soaked, yet I felt fantastic! I was stronger both inside and out.

Once out of the water I started to shiver. Yet, I knew this was not the toughest part of my retreat. The toughest part for me was earlier that morning as I took an emotional risk when I shared scary parts of my cancer story with my fellow retreatants. Emotional risks are scary.

I will paddle on in the warmth and sunshine.

I may paddle again in the cold and rain.

I can do anything.

And I will.

 

 

 

 

 

 

Committing to the Hat

One thing that drives me crazy lately is wearing a hat. It is winter and hat wearing weather. On the pro side, it keeps me toasty warm. I am a fan of toasty warm. On the con side, taking off the hat usually shifts my wig. It has to be done carefully. One hand has to glide up past my forehead and underneath said hat. It rests between the hat and my hair, anchoring it in place. It doesn’t always work. It has become one of many extra processes in my life. It makes me feel self-conscious. I am not a fan of self-conscious.

When I put on a hat, I have to really commit to the hat. You see, I may have it on for a while. Even if I get hot, I don’t feel like I can easily take it off without possibly drawing attention to myself. The reality is probably no one is looking at me. But there’s still the self-conscious thing.

Committing to the hat is just one more thing I have to do. It’s one of the behind the scene consequences of living with cancer. Others include my independent pharmacy of mostly supplements that I ingest several times a day that I believe help me, neupogen injections every weekend to boost white cell counts, feeling anxious about many social situations, not knowing how I’ll feel when I wake up, and juggling an ever-changing schedule of appointments and such.

Committing in general has been up in the air over the past several years. Everything is more uncertain. Maybe that’s why the hat is harder to wear.

Ironically, I need to commit to uncertainty.

A hat seems like such a small thing. But it’s a small thing over which I would rather exercise some control. Control is a big thing for a lot of people. Some try to control other people through a position where they do not know how to be a successful leader. We can’t control how others respond. Ineffective leaders are met with lack of respect and people who undermine them in order to do what is needed. People who seek to manipulate in relationships are still alone inside. Others try to control themselves through self-destructive acts. Yes, we are responsible for our choices. A decision to inflict hurt on yourself is not within your control or a choice. It is the polar opposite of self-love. I have come across a few people in my life who have struggled with self-love. I can’t control them. I can show up for them with love, friendship, and support.

The hat is also about control– my need for control over something where I don’t have it. I’ve really not had much control since diagnosis.

Anyone have a hat for that?

Uncertainty and lack of control go together like chocolate and peanut butter.

Chocolate and peanut butter are better.

I’d love to pal around in a vintage hat of the 1920s, go back in time, and meet my grandma when she was younger. It would have to be a special time traveling hat. We’d be friends. I imagine meeting at what was known back in the day as Stevens Point Normal School where she went for teaching certification. I’d love to see her passion of one of our shared interests and how her youth and experiences shaped the years when I knew her.

I don’t care for the cancer hats, the kinds that are knitted or ordered through cancer magazines and online. This includes bandanas and scarves. They all are just so obvious. When I wore those years ago, I was fine with them, both physically and emotionally comfortable. It was too bad if others had a problem seeing me that way. Now, they are more of a reminder of loss. I am very aware of my losses and don’t need visual reminders. I am not some sort of public service announcement either. The cancer hat I wear is invisible, but it is part of that uncertainty and lack of control.

In fact, I still don’t know how to refer to myself. You think I would after nearly seven years. Am I a survivor? A thriver? The survivor label is used for someone who has been treated for cancer and thought to be cancer free. The thriver label is used to distinguish those who will never be thought of as survivors . . . yet. I’m not sure where this began. Perhaps it was well-intentioned. Perhaps it was designed out of need to give some of that sought after control back to people’s lives. However, there is even some discomfort within the cancer community itself with the term. As a result of that discomfort, sometimes thrivers are not included in discussions or are isolated into their own group because there is worry they will scare others, not have any similar needs in common with survivors, and be of no help. Abigail Johnston explains it better in her blog post Early Stagers vs. Metastatic Patients. Take a moment to read it!

Right now, I think I can wear both those hats. I’m surviving and thriving. Maybe I’m a driver (for change), a striver (for health), a troublemaking conniver (just because). I’m definitely feeling a Lin-Manuel vibe. At the same time, I really don’t like being labeled. Just let me be me.

And there it is . . . the reason I don’t know how to refer to myself.

Just let me be me.

Don’t call me anything. What bothers me is others who want to tell me what I am. Some are very firm about it. We’re all different. The survivor hat may not work for one person, but work really well for someone else.

If I could choose a hat, I would choose a sun hat. I can pull off a wide-brimmed sun hat and wear it well. I like that because with proper sunshades I can people watch (stare at people) and no one knows that’s what I’m doing (until now). Keeping cool in the hot sun is a priority, too. My fair complexion freckles and I burn easily. I must do what I can to remain youthful looking. Medications also require avoiding time in direct sun.

My favorite hat is a cream wool winter hat I used to wear with the brim flipped up. I guess it’s called a bucket hat (think Paddington Bear). I wore it during a golden time when all was well in my life. It looked cute on me. I had no problems committing to that hat. It was functional, attractive, and easy to wear. Stylistically, it was very simple and matched with many of my coats. My life was also much simpler when I wore it, but I’m sure I didn’t realize it because I didn’t know what I know now.

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Are there any positives to committing to the hat?

People who have let go of control seem to be happier. You can love and accept things as they are without a need to fix something. Surrendering control may present opportunities to relax. You may find you get what you need. Controlling less and doing less may give you more. Committing to the hat, committing to uncertainty, can help a person commit to more freedom. Spontaneity can take pressure off from a lot of choices. Do you want to know something? When I started this paragraph, I really didn’t think I was going to find a way to reframe this hat thing in a positive way. Anything is possible.

Committing to freedom, to relaxing, to ultimately receiving more of what I need all sound a lot better than wearing uncertainty day after day after day.

I know for everyone else wearing a hat doesn’t cause a second thought. It shouldn’t. Well, maybe it should cause pause for some folks because there are people who adorn some very questionable hat choices in my book. Remember though, it isn’t really about the hat. One last thing the hat is about is recognizing that there are things people do that aren’t visible on the surface. Everyone has these. Everyone has uncertainty. Everyone just wants to have the comfort of a hat that fits really well. My favorite cream hat calls.