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.