The Lesson of the Milkweed

Crunchy leaves cover a hard ground. A gray sky creates a contrast against the bare branches. The air is chilly. Autumn is a season that doesn’t scream softness. Softness is there. I have been surprised to discover it in unlikely places this fall. Sometimes it’s harder for me to find, but it’s still there, waiting for me to find it.

October needs softness because Breast Cancer Awareness Month bombards me with hard. Awareness is hard. Pink is hard. People who appear to celebrate the month make it hard. And then there’s me because I can make it hard on myself.

I go for a hike when I can to exercise and relax. It sounds like a contradiction, but exercise in nature achieves both for me. Pheasant Branch Conservancy is one of my favorite places to walk and a source of joy. I ventured there last week and stopped in several places to open up milkweed pods. They are remarkably soft. An older gentleman with a shock of white hair noticed what I was doing and wandered over. He joined me in releasing milkweed seeds into the breeze. There we stood, watching the wind carry them away. He laughed and that was one of the best parts. He told me about milkweed bugs. Then he drifted away, kind of like a milkweed seed himself. I did the same in another direction.

Opening milkweed pods is a beautiful example of finding softness this month. A rough outer exterior protects silky soft seeds that float away in the wind. Opening them as a child and watching them dance and fly was pure joy. It made me feel like I was encouraging their quest to find a new home and witnessing it happen. It still does.

This year, October 13th is Metastatic Breast Cancer Awareness DAY. It’s a prime example of some hardness for me. Yes, a whole day is set aside in breast cancer awareness month for the only kind of cancer that kills. It’s also Yorkshire Pudding Day. Here are two facts on this special awareness day:

  • 116 women and men a year die every day from MBC.
  • There are around 155,000 people living with MBC in the U.S.

 

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Milkweed seeds at Pheasant Branch Conservancy

 

I need more milkweed seeds. Lots of them.

Sitting in front of my fireplace on the first few evenings when it’s cold enough is another time when softness settles around me. There is softness in the glow and I feel wrapped in warmth. Those first fires of fall are extra special because it sets a toasty tone for fall.

Here are a few other favorites:

Savoring hot tea, coffee, and hot chocolate again.

Hanging around my house in my plaid flannel pajamas.

Snuggling under warm blankets with a good book.

Immersing myself on a trail in the woods while surrounded by trees that have exploded in color.

These actions are a vital part of self-care and letting myself know I am important. They are all external examples even though I have a part of them.

Self-care is super soft. I need to look for soft places within myself, too. Softness must be internal. I can find soft places within when I slow down and enjoy the moment. Rushing isn’t worth much. Other ways I can practice self-care are by showing myself empathy and understanding, forgiving myself when I make mistakes, and allowing space for my feelings. Negative self-talk is hardness; compassionate self-talk is softness. Self-care is love.

Cancer causes hardness because no one comes out completely unscathed. It’s exhausting. Some hardness is on the outside, some on the inside. You carry outer and inner scars. Cancer visibly ages a person. A person develops a thicker skin and smiles when insensitive comments are made. Many experiences and conversations are difficult to endure and process. You emerge from treatments feeling battered, fatigued, and having experienced traumatic physical and/or emotional changes. If you’re metastatic, tolerating toxicity is ongoing. None of these are soft images.

There is so much talk about being strong and fighting or battling. Strength is a double-edged sword. I am strong. I work on physical and emotional strength. The hero Odysseus was a recurring reference in high school among my friends because he was rough, tough, hard to bluff, and used to hardships. I’ve channeled Odysseus’s strength regularly over the time I’ve been living with cancer to move through hardship after hardship. The strength you call upon each day to make it your best is empowering strength. Your strength is weakened when it’s exerted in battling and fighting cancer, or people and attitudes that go against you. I need to focus on the strength that empowers me and not waste it in battle mode. My strength goes toward empowerment and living.

Fall is a wonderful opportunity to let things go. Trees let go of their leaves with ease. Fall can be a time to let go of hard things. Letting go is hard because changes usually are difficult for me. Still, my life will be easier if I only let go of one hard thing. Letting go of many could bring more happiness to my life. What will it be?

Consider responding:

  • What can you let go of this fall?
  • Where do you find softness in nature?

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?

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.

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.