Fires, Tigers, and Trees

One way I have thought about my life has been to picture myself walking along a well-worn path that I know well. I know where various landmarks are, benches, scenic overlooks, my favorite trees, and where the path leads. While walking, I discover a blazing fire in front of me that blocks my way. I can see through the fire to where I want to be, but I can’t get there. There also is a saber tooth tiger off to the side, growling and gnashing its teeth. Looks fierce as saber tooth tigers do. I can’t get past the fire or the tiger.

I have come to see the fire as medical obstacles I encounter that I seem to regularly be up against (tests, side effects, policies that are in place for no patient centered good reason, etc.). Seemingly forever changing government restrictions placed on me surrounding disability are the saber tooth tiger. Let’s throw a downed tree across the path for good measure because sometimes (always) other events develop if only to keep me on my toes.

After countless times running right up against these and being burned, scratched, and blocked, I am tired of using my essential energy in attempts to break through to the other side of these obstacles to live what I saw as the life I was supposed to have. My life is different from that vision. After repeated attempts, I’ve noticed a path far, far off to the side that I didn’t notice at first. Where did it come from? Had it always been there?

Although I don’t know where it exactly leads, it may very well be

a . . . .

perfectly . . .

good . . .

path.

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Hmmmm. No fire. No tigers. No downed trees. I may walk happily and go the distance on this path. Perhaps it is even a better path. Now that’s a surprising thought. The best decision for me is to walk over to it and make it my own. And so I have.

Where my attention goes is where my energy flows. I want to focus on more affirming thoughts and words about my health, my relationships, and my future. My energy goes to walking on this path.

Creating a personal mission statement helps form a vision of where I see myself heading in the next five years.

A personal vision or mission statement combines purpose with your own set of abilities, strengths, and talents. My new mission needs to incorporate good health, some kind of teaching component, and my values. It’s a challenge to narrow it down to one sentence, but keeping it simple strips it down to what’s most important. Here’s my sentence: I must be healthy so I can teach through example and live my values joyfully, sharing my gifts with people to make a positive difference.

Where do you see yourself five years from now?

To create your own personal mission statement, you need to explore your core values. Answer the following questions to provide a framework for developing a mission statement of your own:

  • What are my top three core values?
  • Whose work or profession do I admire?
  • If I could afford to work without pay, what would I do?
  • What are my natural talents?
  • What did I love to do as a child?

Sometimes what comes to mind first isn’t always the right answer. As a child, I loved to climb the big locust tree in the front yard. There was adventure and a little risk. If I climbed high enough and stood on precariously thin branches, I could see Lake Mendota in the distance. Yet, I never considered becoming a professional tree climber. Thank goodness! Being in nature is something I still enjoy. I would happily spend time hiking wooded trails and wouldn’t need to be paid so much as a dime to do so. I also loved going to school and then playing school when I got home. Teaching fit. It included core values and encompassed natural talents. I became a teacher.

My path is different from what I thought it would be. What each of us can do is to walk whatever our path is with courage, dignity, and grace. I believe there is a lot of choice in terms of how we walk. Look for a beautiful path where there aren’t too many obstacles in your way. If there are, it may be time to find another path.

Buttober: All Research Dollars Are Not Equal

Breast Cancer Awareness Month is in October. Fundraisers abound whether they are runs, walks, auctions, or other special events. All females of a certain age are reminded to do breast self-exams. Almost every day there is a news story featuring a survivor. I am grateful for the awareness and any funds that go toward finding a cure.

Welcome to BUTTOBER.

Yet, there is a “but” in all this, or more appropriately a butt.

My feelings about breast cancer awareness month have become mixed. The efforts in fundraising and raising awareness are impressive. How funds are appropriated toward research is a kick in the keister for anyone wanting more dollars to go toward MBC treatments. Whenever I donate to the cancer research center of my choice, I click on the drop down window indicating I want the money to be spent on breast cancer research. I thought it was shared evenly with breast cancer research going on for all stages. I thought wrong. 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. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early stage lives.

Our lives matter a lot.

I contacted the major gift officer at the cancer center where I choose to donate. She agreed the percentage was low for donation allocation to MBC research. I was unable to get a definite percentage pinned down in our conversations. Projects were referred to relating to metastatic outliers, circulating tumor cells, cancer biology, and clinical trials. Even with these various projects, it seems a percentage in the single digits would be realistic with information available on what is being done in other research settings.

I find that unacceptable.

Here are names of specific funds and foundations where dollars go specifically to metastatic breast cancer research:

The More for Stage IV Research Fund is a separate breast cancer fund where 100% of money donated goes specifically toward metastatic breast cancer research at the UW- Madison Carbone Cancer Center. You can’t get to this through the official Carbone Cancer website; you must first go to the “One Woman Many Lakes” site.

Click HERE to learn more about the More for Stage IV Research Fund where donations go to the Carbone Cancer Center.

METAvivor funds metastatic breast cancer awareness, research, and support. Information provided on their site says 100% of all donations go to MBC specific research grants.

Click HERE to find out more about METAvivor.

I admit I had trouble tracking down others. I kept hitting a snag where metastasis was mentioned in a search, but then I couldn’t find anything specific at the site. When I did, I got the feeling only a small portion of what was donated went for later stage research since it wasn’t emphasized more heavily. Then I realized the brick wall I kept running into was precisely the problem – there simply wasn’t enough research being done for MBC and that was why I couldn’t find resources to share! I would be happy to be wrong here as it would mean more of this type of research is commonplace. Breast cancer that is contained to the breast and stopped there doesn’t kill people. Its spread to other areas, however, does, and it would stand to reason that this is where the majority of time, resources, and research should be spent . . . BUTT it is not.

Big time Buttober.

Please call ahead wherever you choose to make a donation and inquire exactly where your money is going if it is unclear to you.

How else can you advocate for more research for MBC?

  • Know where your money is going when donating to cancer research. All research dollars are not equal.
  • Call the major gift officer in charge of fundraising where you want to donate and find out what percentage of donations go toward research in finding new medicines and treatments for metastatic cancer. This person should be able to put you in contact with the right person who can answer more specific questions on research if needed. Let them know you want more done to move advanced stage cancer research forward.
  • Let others know what you learn. Use social media, write op-ed pieces, and suggest a news story.
  • Demand more from your local, state, and national politicians. Health care means health care for everyone! I am for prevention. I am for curing early cancer. I am all in for supporting research to find cures for all of it, regardless of its stage.
  • This idea may be more fun. The #KissThis4MBC campaign takes place through October on Twitter. Everyone who shares a selfie or boomerang using the hashtag #KissThis4MBC will have $15 donated to @metavivor and @MBCNbuzz by the group @Novartis (up to $200K). Check them out, as well as my pic at @kkbadger1. Say cheese!

Demanding that more research dollars be spent on treatments for advanced cancer is just as important as money spent on prevention. Transforming attitudes to focus on living with unrelenting wellness is part of the needed change.

Find a way.

Hard Days

Today I share a story of a recent hard day. It was treatment day, or as I call it, the day I receive my special wellness juice. I cried there, only a few minutes, which I almost never do, because I had been without my hair for two years. It wasn’t supposed to be this way. I was to receive wellness juice for six months and then gradually return back to the life I knew. Six months turned into a year, and then a year became two years and counting. I am glad I have my wig. I consciously chose not to do the head wraps I had done back in 2012 because I wanted to go out and about my business without everyone knowing my personal business. A wig helped me feel normal, and it was only going to be short-term, six months.

Well, sometimes it gets me down. It got me really down on this particular day. I told my nurse, Amanda, that I was feeling a lot of anger over it lately and was just so tired of not having enough hair and experiencing such minimal growth (if any) from what I did have. There are a lot of things that aren’t fair about having cancer that are more important than the hair thing, but the hair thing is still important. On this day, it was the hair thing that affected my emotions in a big way.

I also read a stupid magazine article in the waiting room about how special skull caps (often referred to as penguin caps) were preserving hair for patients so they didn’t experience hair loss. I thought hard about this when I started down this road again. Statistically, you still lost up to 50% of your hair. It worked better on people with thick hair. My hair was fine, and I already had lost a lot of it prior to starting my current treatments due to oral medications with hair loss side effects. The article didn’t make me feel good and didn’t have any of the data that it only sort of worked. Why would it? It wanted to promote a product, even if that meant it was (in my opinion) also promoting false hope.

Another part of the hardness that day was the realization that the silver hair that was growing along my hairline was creeping down my neck and likely was visible from behind me if one looked closely, at the right angle, or in the right light. Again, I try really hard to pull off some semblance of normal and I just don’t need hair choosing to crop up in places where it’s unwanted. I didn’t know how to get rid of it on my own because my eyes and arms would have to detach from my body to see and do what was needed to take care of it. Then I just started feeling really alone and sorry for myself. I could let it be, whack away at it in some fashion where it was sure to look worse after I finished, or I could get it taken care of properly.

On my way home, I saw a William Jon Salon that I’ve passed many times. It was humbling. No, I didn’t have an appointment, but I had been a customer years back for this and that. Now, I was going through chemotherapy (this is where I started to talk-cry) . . . and I had this hair on my neck that . . . needed to go . . . and I wondered if someone could just help me . . . and touch it up. Sniffle, sniffle. Pull myself together. Asking for help in an establishment where this fell under their business shouldn’t be so hard. But it was really, really hard. I felt unattractive and exposed.

Of course they could help. They would love to. Don’t worry. It was very easy. No, there would be no charge. It took less than two minutes. Polly and Jennifer were both very compassionate. I can come back. I most certainly will when my hair reaches a stage where it may be presentable and decides to grow. It’s unpredictable when being on wellness juice is part of my long-term plan. I will dream of going back where I can feel confident with my own hair. I may even get beautiful streaks of blue highlights to match my eyes. Whoa, I better settle down!

I wish there were a secret to getting through hard days. Maybe they just need to be gotten through and put in the past. If I knew how to make them not hard, I would and then they wouldn’t be hard days. I think that’s probably what happens anyways. I figure something out and then move forward where I run into something new that catches me off guard and becomes the next hard thing. I do the best I can and I try to learn from it so the next hard day can be met with a little more grace and dignity.

There have been many days harder than, ahem, my “bad hair” day, but this is the story I’m comfortable sharing. The good news is my track record is excellent for getting through these hard days. Another day there will be something else to deal with, but hopefully I can deal with it swiftly, and it will be a better day. A good day.

Please share how you get through hard days if you feel comfortable.

 

Stand Tall Like You Mean It and Other Definitions of Strength

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BEING STRONG is one of my repetitive themes. I think about it, talk about it, and write about it.

I do it.

I used to think of being strong in purely the literal sense – muscular, powerful, and indestructible. Rarely, if ever, do I achieve this type of strength. In time, my definition broadened to a mental strength able to withstand hardships and adversity. Both of those definitions still hold true for me, but strength takes on a personal definition when you define it as an integral part of yourself as a cancer survivor. What does it mean to be strong as someone living with cancer?

Physical Strength

Being physically strong helps build your own private army inside to combat disease. A strong body makes it harder for disease to take hold. A strong body usually means a strong immune system. And it feels good! Build strength and stamina as you are able. Walking, cardio, and weight training all build stamina and strength. Pick an activity you enjoy. Physical strength does so much more than build muscle. Being physically strong also boosts your confidence and will.

Stand Tall and Mean It

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Posture is great and exerts your confidence. I was surprised to discover I grew an inch in the past year. The reverse is more what I’d expect. I attribute the miracle inch to working out more, stretching my spine, and not carrying myself slightly hunched over with the fear of what might happen next. I’ve learned a lot about how to stand tall physically and emotionally. Right now, I want to emphasize the more figurative meaning. Be more than okay with the choices you make. You get to decide. You are in control. There are many days it feels like you aren’t in control, but you are so much more than a bad day or days. Trust yourself to make the choices that are right for you. No one else has to understand it. Stand tall and mean it. I find myself regularly surprised at how good I feel when I think of myself as ten feet tall on the inside. RISE UP!

You Are Strong Enough

No matter what situation you find yourself in, you are strong enough. I love the pep talks I give myself. It’s really important you know how you feel about how you plan to live because you will have many opportunities to speak your intentions. Not everyone will support these. Too bad for them. Some may even insist you can’t do something. You certainly are stronger than someone else’s opinion of your inner strength. You are stronger than you know. Think of all the unknowns, challenges, and disappointments you’ve gotten through in life. Don’t doubt that you are strong enough to handle what comes your way. You are amazingly strong.

Tears As Strength

I have always been a crier. It has taken years for me to grow into my tears and understand they are a strength and not a weakness. I am comfortable with my feelings. I am vulnerable enough to let them come. And I have an ugly cry, just saying. Crying it out releases emotions that need to be sent away. Everyone is different. Some of us are more sensitive than others. Crying works really, really well for me. LET TEARS BE PART OF YOUR STRONG STORM.

What does being strong mean to you? Being a strong cancer survivor means I can define strength however it works for me. I can push myself a little harder and farther physically. I can tell negativity to take a hike. I can be tough enough to take breaks and rest. I can have a good cry when needed. However I choose to define strength, I know I am more than strong enough. We all are.

Stage V and Kardashian Power

IMG_1077 close up copyThe Kardashian family is highly successful. Whether you approve or disapprove of their choices is not the point in today’s post. What is relevant is how they have been able to achieve the level of success they have experienced and harnessing it to change perceptions about cancer.

There are many causes for their success. The Kardashian brand is highly visible in the public eye. They have strong financial backing. The family’s influence is far-reaching, almost anything Kardashian turns into gold, and each family member knows how to work the Kardashian brand through the use of social media. Each family member has celebrity power.

My brand is Stage V – a cancer stage focused on unrelenting wellness.

I do not accept that Stage IV is the end of the line. Therefore, I’ve created a space where I live in alignment with my own expectations, ignoring what I’ve heard in terms of medical statistics. Stage V is a way to think outside the medical box, shattering it, and creates a mindset toward surviving and thriving. This brand, product, however it would be labeled in the business world if it were to be thought of as something to sell, needs to become more visible to the masses. Using social media is a good way to increase visibility to the public eye.

I do not have the same type of assets like those possessed by the Kardashians, nor am I a celebrity. I am okay with this because I am introverted and treasure my privacy. Yet, I understand that in order for what I am branding, individuals with a Stage IV cancer diagnosis need to re-envision their life as a Stage V lifestyle where living in a world of wellness is the focus. Stage V needs to be branded like a Kardashian perfume. It needs to have Kim-Kanye visibility on social media, and it needs to be talked about and recognized as a real and viable concept. Survivors who ooze Stage V qualities are the best recognition to give it credibility and success. Exposure and increased visibility will mean Stage V becomes more than a powerful brand; Stage V becomes a way of living as intended.

I have heard two news stories about Stage IV cancer over summer that used the back-to-back sentences: “She has Stage IV breast cancer. She’s dying.” It was maddening because the story was about a woman swimming Madison lakes to raise awareness about metastatic breast cancer. She looked every bit as strong and as alive as a person could be. The part about her dying just didn’t seem accurate, nor did I think it was necessary to the story. I contacted the news station and found out this was how the woman featured described herself. I disagree with her description, but I wholeheartedly support and applaud her efforts. I choose to see her as Stage V.

How can you talk about Stage V in ways that promote its visibility positively?

Education is the first step in bringing about change. More survivors are speaking up and being such educators. If you are a reader with cancer and you are ready to make a difference by altering perceptions one by one, use the following as scripts to guide conversations in shifting others to a Stage V mindset.

  • Explain what Stage V means. Keep it simple but be very clear that you are living in a space of wellness. You have moved beyond the medical classification of your health and are living fully. You don’t accept discussing your health in unhealthy or disparaging terms.
  • Possible script – “Thanks for caring. I am living each day in a mindset of wellness. Yes, things have changed, but I don’t see myself as sick.”
  • Possible script – “I don’t feel sick. I feel well. I am taking such good care of myself that I will be even healthier in the future.”
  • Live and lead by example. Normal is as normal does. Wellness is as wellness does.
  • If others cannot accept your mindset as being one of unrelenting wellness, then politely tell them they can step aside and get out of your way. You do not deserve to be categorized and put in a box. If you are not going to block your own path, others will not be allowed to either.

What would Kim Kardashian do? I don’t think she’d listen to criticism or let naysayers stand in her way. I believe she would speak her mind and get on with what she needed to do. Appropriate disclaimer inserted here: Of course, I don’t know Kim and have no idea what she would really do. Yet, the idea that you create and then live something better if you aren’t happy with the choices offered to you is exactly the same whether one thinks about Kardashian Power or Stage V Power. Again, I don’t really know what Kim would or would not do. The bigger question . . . What will you do?

 

Guilt and Release

I’ve been feeling a little guilty that I’m retired and not teaching.

Why couldn’t I find a way to go back?

The truth is I had found a way for four years after my initial diagnosis and treatment. I had found a way to keep my teaching job, full time, and also a way to stay on top of health matters and decisions. Things were a lot different then. Appointments were monthly. Medication was oral. Those were the days of aromatase inhibitors. Then came the year of oral chemo and I still found a way to continue teaching, but it was getting harder and harder. It took all my energy and side effects took their toll. I felt exhausted and needed to rest when I got home from work and appointments. It seemed all I did was manage elements of my health so I could teach. After two years existing this way, came the recommendation that more traditional chemotherapy was best for me. It would be too hard for me to care for the educational best interests of twenty some second graders while caring for myself. Thankfully, I even found a way to have my job held for me while I was on medical leave for two years, which was a little unusual as those things go. Last spring, I needed to make a decision about my career. Plans for a new school year were being made. Extending medical leave was no longer possible. Retirement was the best choice, so I retired super early, having not been able to find a way to teach kids and do what I have always loved.

Why?

I’ve always been able to find a way.

The only semblance of an answer I come up with is that I’m supposed to find my way in something different. I am still finding a way to stay healthy. Maybe I am to find a way to be a writer. I’d like to find ways to travel more. Perhaps I am to find a way in something I don’t even know yet.

I think that it’s really difficult to realize that something new is about to begin when something else ends that we don’t want to end. Looking forward is hard when we’re too busy looking back. And so it’s onward to finding whatever it is I’m supposed to find with each new day. I will keep searching.

Guilt surfaces as an emotion from time to time. It just can’t stick around too long. Lately, I’m thinking about guilt like catch and release fishing. I catch a whopper, a really large sturgeon sized catch of guilt worthy of its weight. Guilt is heavy. I realize I’ve caught it and I don’t want it. Not going to gut it, eat it, or mount it on my wall. No way. Guilt is not a prize. I must release that guilt and then get back to more enjoyable, positive, and meaningful pursuits. So I release it, reminding myself I fish for joy, kindness, and love.

Joy, kindness, and love are catches worth keeping.

Finding A Way

Diana Nyad is the first person ever to complete a swim from Cuba to Florida without a shark tank. Here are some of the numbers: she did it when she was 64 years old, it was a 103 mile long swim, it took her 53 hours, and she completed her swim on her fifth try on September 2, 2013.

Her mantra was persistent – Find a way.  She didn’t give up.

Finding a way is a constant theme in my life, too. I need to find ways to increase my strength and stamina. I need to find ways to stay motivated and never give up my belief that I am healthy. I need to find ways to lead and live by example. I need to find ways that reflect purpose and meaning in my life. I need to find ways to experience joy every day. I need to find ways to live my truth. I sure need a lot of things! Life is challenging for each of us. Finding a way is challenging for me because I am finding my way as someone living with cancer.

LIVING with cancer is an intentional part in finding my way as opposed to battling or fighting cancer. My energy is focused on living, and living well. Yes, there is grit involved. Sometimes it is hard. But the words are there just as they were for Diana Nyad – find a way, find a way, find a way. No matter what.

And so I have decided to write about finding a way, my way, and what that means to me in my efforts to be strong, to be hopeful, and to be well as I live with something that has pushed me more than anything I have ever known. I am pushing back. If you read something that helps you find your way, then so much the better.

Find a way, find a way, find a way.  Always.

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