#469 It Is Not Enough

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It's Mets Monday and today's featured blog is from a woman I met through METAvivor, Lori Marx-Rubiner.  She hit the nail on the head describing how we are drowning while everyone talks about prevention, awareness, etc. etc. etc.

On a similar vein, I will be swimming June 28th and trust me, you will hear all about it beforehand; but this is a bit of a preview on how you can become an advocate and make a difference in our lives.  Have I peaked your interest?  I hope so because we plan on making a huge splash shaking up the cancer organizations and the government with their big bucks being our target.

Roaring, ranting and raving--that's us so stay tuned for more updates here and on my Facebook page, One Woman Many Lakes.

Right now, though, click on Lori's blog for a fascinating and enlightening read--Summertime and MBC by Lori Marx-Rubiner.  Just realized that this link will take her to her blog but not specifically to the one I am referencing.  Here is her entire blog.

Summertime and MBC by Lori Marx-Rubiner

It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

Of course, I’m not serious. Except that it is the very model we use in cancer research funding. Those who are dying are left to figure things out on their own while the resources (read: funding) are, to continue my metaphor, directed to “prevention” whether primary prevention or prevention of recurrence, the lion’s share of the resources are for those on the deck, and in the case of early stage disease, those who are standing upright in the shallow end.

Prevention, if it can be accomplished, or risk reduction (much better langue IMHO), are without question noble pursuits. (We should keep teaching our kids how to swim!) I don’t know a single breast cancer patient who wants anyone else to go through what we have experienced. This research is critical – and I support it! But when people are dying, is prevention the first thing we should think of?

Let me remind you:

Percent of breast cancer deaths caused by metastatic disease:           nearly 100%

Percent of breast cancer funding focused on metastatic disease:                    3-7%

We have an opportunity to rethink this. Just as we as activists and rabble-rousers have  taught the world a lot about breast cancer “awareness” and pinkwashing, we can, we must work to focus attention on the profound disparities in the distribution of research funds.

The federal government’s Cancer Moonshot is beginning to gather momentum – we’ve seen the White House Task Force and NCI’s Blue Ribbon panel who will guide these efforts. You can learn more here. Personally, I am cautiously optimistic that this effort can make a meaningful difference. If it brings together creative thinkers, helps break down silos, encourages collaboration and provides funding, a lot can be done. To be successful, however, the work must be strategic and focused.

The question remains where the effort’s primary foci will be established. I would argue that the lives that are in immediate need of saving be given appropriate attention! One small step in that direction, if you haven’t already, is to sign the petition urging the White House to set metastatice research as a Cancer Moonshot priority.

It’s the moment to speak up, we have a window of opportunity that will close soon. We must keep this agenda in focus, urge our leaders to focus on what their decisions mean in the lives of real people.

So many of us living with MBC are tired of being told we don’t matter! We aren’t counted, our disease isn’t funded. We are, as I’ve said before, thrown under the proverbial bus – where a number of #FearlessFriends try to help. But when your life is literally on the line, it’s remarkably hard to deal with this additional burden amid treatments and debilitating side effects, scans and scanxiety, the need for self-care, and to spends time doing the things you love with the ones you love – knowing that new and worse treatments are to come – for those of us who are lucky.

So sign the petition. Talk about the disparities in research. Tell the story of your life. Contact your elected officials. Urge your organizations to put it on the agenda. Blog about it. Put it on Facebook. Educate wherever you can.

People need to hear from us right now – this is a moment in time that can make a difference!

What will you do to save lives?

Oh!  And don't forget to donate at Every dollar counts!

Thanks for reading #469 of 7777.