What I Read in October

Warning: Reading further may cause you to be uncomfortable. It’s kind of the point.

I have read a lot over the past month.

I have read posts and tweets from mothers who want more time with their precious children.

I have read from mothers who have said good-bye to children who endured cancer for the majority of their all too short lives.

Husbands have carried on important work in memory of what their wives started.

Brave men and women have laid it all out there, revealing their souls and bodies in photographs and words.

Anger, pain, rage, doubt, despair, fear, suffering, grief, compassion, sympathy, empathy, humor, support, hope, inspiration, courage, strength, and love have all been represented. Feelings have been brutally raw and honest.

I have sobbed uncontrollably. I have grieved for their losses and relived so many of my own.

If only survivors or survivor supporters read these impassioned stories, not much will change in advancing research that will save lives.

More people must be reached.

More people need to be outraged.

More people need to feel uncomfortable.

Ignorance is not bliss in this case. Ignorance is more senseless death. Feeling discomfort means you care and that you may push for something better.

Push.

I believe we all have a responsibility to speak out and keep speaking out. Shout from the rooftops.

Shout.

I ask you to consider how you can best influence change and then do it. Small shifts in the right direction are still shifts for positive change.

More effective treatments are needed. They were needed years ago. Who gets them should not be decided by insurance companies, pharmaceutical companies, politicians, or based upon who can afford them. Having access to drugs and surgeries is very personal – not some business for profit. We need something better for our mothers, fathers, children, friends, and all those we love. We need more for ourselves.

I refer you to Sweat Pants & Coffee for a post on 5 Charities that are making a real impact for breast cancer patients to add to you list for possible donations. My new favorite is still the More For Stage IV Fund.

The first breast cancer awareness event in the U.S. was just one week back in October of 1985. Thirty-three years ago. The number of deaths from metastatic breast cancers has not gone down since 1995 and has remained pretty much the same at 41,000 a year (113 a day). How can that be?

Hold the presses . . . I know why. It’s because 30% of breast cancers become metastatic (in addition to the 6-10% that already are at diagnosis) and only 4-7% of research funding is allocated toward secondary cancer research (also known as MBC). Eleven months from now it will start all over again. The awareness. The pink crap. I am over it. I want a celebration for the month when a cure is discovered. Every month is an awareness month for something. The thing is, if you have cancer, a different disease, or a chronic condition, every day is a day of awareness.

One of the key ideas I taught my second graders every year was that reading was thinking. I revisited this idea countless times during the year because I wanted it to stick like super glue. Reading gives us the opportunity to think, to act, and to change the world. This month my reading choices were not chosen for enjoyment. I read to gather information and then pulled it all together. One conclusion that emerged from synthesizing all this information was that the voices of those affected by metastatic cancer of any kind have grown louder and louder. What we have to say may be hard to say and possibly difficult to hear and to read, but we won’t be quiet.

From the bottom of my heart, thank you so much for reading.

I’ll be more positive in November.

The Choices We Make

“It is our choices that show us what we truly are, far more than our abilities.”  ~ J.K. Rowling

It’s been years since I’ve read a Harry Potter novel. Oh, how I loved them! J.K. Rowling created a fantasy world so real. The lasting relationships she developed through her characters based on trust and truth still set examples today for relationships I seek. The themes she wrote about through fiction resonate as powerful truths.

J.K. Rowling has fallen off the Forbes Billionaire list due to charitable giving. It’s a clear choice that reflects her beliefs and core values.

I’ve thought a lot about the choices I’ve made and how those choices have shown me what/who I truly am. I make many choices. Some surely have been mistakes. My culinary fiasco of brownies with spinach puree did not work. What was I thinking? Fortunately, I’ve made health related choices that have gone better for me.

I choose to exercise daily.

I choose to be positive.

I choose to surround myself with people who focus on joy.

I choose to focus on self-care.

I choose to see myself as healthy.

I choose to live with a Stage V mindset focused on unrelenting wellness.

Read more about Stage V in an earlier post if you missed it or need a refresher.

These choices have shown me that I am responsible for my reactions and decisions. We all always have a choice in terms of how we react whether those choices are based on health, comments or the behaviors of others, or whatever unexpected twists and turns life takes. We all have our stuff. We get to choose how we walk with that stuff. We each need to be intentional with the choices we make.

My choices have taught me how to live more fully and to focus on what I feel is important. The person I truly am is a person who is still a learner, discovering new truths about myself, and doing my best each day to be healthy and live with joy. I also have perfected making dark chocolate brownies straight from Betty Crocker. If brownies somehow define what I am, I cannot argue.

So be it.

Please comment: What choices have you made that really make a difference in your life?

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.

Charlie’s Angels and Empowerment

Today I digress a bit from the usual topic of living with cancer and living well. I’m aiming for something more on the lighter side. As a child, I loved watching Charlie’s Angels on TV. I must have been about seven to ten years old. I thought Sabrina, Kelly, and Kris were all independent and gutsy.

Reruns were on over summer. It is also four decades later and I look back on the series with a slightly different lens. Here are some things I noticed:

  • The opening sequence begins, “Once upon a time, there were three little girls who went to the police academy.” Apparently the notion of women in a police academy needed to be likened to that of a fairy tale. Back in the 1970s, it also apparently was just fine to refer to women as “little girls.”
  • The little girls were given “very hazardous duties” (crossing guard, telephone operator, etc.) and Charlie was able to take them away from these. Did Magnum P.I. need to be rescued from hazardous duties? He did not. He was smack dab in the middle of danger several times an episode.
  • Charlie always had scantily clad female company in his office, no matter if his companion was playing backgammon or doing his accounting. I have never done either of these activities in my swimwear. Maybe that’s one of my problems.
  • Sabrina, Kelly, and Kris wore very stylish clothing and heels that didn’t easily lend themselves to chasing the bad guys or physical confrontations. They often seemed unprepared for that possibility. They almost always managed to get themselves into scrapes because they went places alone. This was done on repeated episodes. It must have been a formula that worked for the writers that gave good ratings. Unfortunately, it also perpetuated a stereotype.
  • Episode topics usually dealt with crimes where there was some sort of attack on women where the woman was helpless. There was always a reminder of male dominance in a show meant to showcase independent females. The series did progress to smarter storylines in later years, but by then the series seemed to be on its way out.
  • Bosley was a perfectly nice man. He was not seemingly all that fit, he spoke with a bit of a lisp, and never once was shown in a speedo. Neither was Magnum to my recollection, but Magnum had short shorts that he simply had to wear because he lived in Hawaii.

How is any of this empowering? Sabrina seemed the smartest and quickest on her feet. She really acted as the glue in almost every episode. I guess empowerment at the time meant a show that provided images of independent women working in nontraditional roles. It portrayed women working together for a common cause where women supported one another. It also showed that women didn’t have to sacrifice their femininity to be successful. All good points.

I define empowered women today as women who are shown as intelligent, independent, and physically and emotionally strong. These are women who are competent and able to stand on their own to accomplish goals and see opportunities as growth when tougher choices are needed. They live what they believe and tell the truth. Charlie’s Angels paved the way for what continues to be an evolution for women’s empowerment. Empowerment involves dimension. We all have dimension with our interests, achievements, passions, and even our flaws. Flaws make us unique and add a lot of dimension. None of us are fallen or broken. We’re just growing our wings. Then we fly.

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.