I’m up early today (before 5:00 a.m.) … couldn’t sleep … but overall, I’m feeling rested. I’ve pretty much kept my scheduled cleared and I’m simply being who God made me to be.
There are a myriad of words that can be used to describe me, just as there are for you. However, the most prominent words that seem to come to mind right now is the fact that I’m actively living and dying at the same time. I am very acutely aware that in spite of the heroic efforts to extend my life, I am going to die of a disease that kills more than 40,000 people each year in the United States alone.
I will, in all likelihood, die of this disease long before an expected lifespan. As hard as these words are to you … I am not going to "beat" this.
Why? Why are people still dying? We’ve had decades of pink ribbons pimped out to us with the extremely positive mantra of "Early detection saves lives!" It’s more accurate to say that "Early detection saves some lives." Too many of those with "early detection" have their cancer return years later, only to kill them in a very short period of time.
There’s a big word in cancer land that hasn’t been mentioned much over the last 50 years. That word is METASTATIC. Met-a-sta-tic. This means the cancer has spread beyond where it started and has spread to distant locations. Cancerous cells take over healthy cells and the organ dies. People die of lung failure, liver failure, brain failure and other failures.
How does a cancer spread? Why does a cancer spread? Why are metastatic cancer cells so much more difficult to kill off than primary cancer cells? What makes a metastatic cancer cell become active again years after a primary diagnosis?
I’m a simple woman with simple questions. I’m not a scientist.
However, I’m the one being impacted over where funding goes for cancer research.
Today is the day where the Cancer Moonshot Initiative is coming together. I know, I know … many of you are skeptical (including me) that this will make a difference of any kind … but you know what? WE HAVE TO TRY! While it’s too late for me … I’m going to die before this initiative gets off the ground … it’s not too late for my children.
Here’s the deal. We cannot keep the research dollars in the "prevention/early detection/treat/cure" bucket. That’s not working. We MUST have change and YOU can be a part of this change.
Due to social media and more, the metastatic cancer community is using their collective breaths and stories to emphasize the need for research for the type of cancer that kills … metastatic disease. And I’m talking about ALL cancers, not just the one that impacts my life.
People always ask what they can do to help. You can help by following this suggestions for today.
There are many cross-cancer metastatic specific items that could be transformative for metastatic cancer patients, regardless of their tumor type.
In order to have a unified voice, a bunch of us have bulleted out several issues that can help metastatic patients across most cancers. We are asking that you help us spread the word in social media and beyond to encourage people to do two things.
STEPS TO TAKE TO PARTICIPATE IN THE CANCER MOONSHOT.
1) Copy and paste the items below as a research idea in the ‘Tumor Evolution and Progression’ bucket in this link:
To do this:
a) Register at: https://cancerresearchideas.cancer.gov/a/register
b) Copy the bullets, click on this link:
https://cancerresearchideas.cancer.gov
c) Click on the ‘Tumor Evolution and Progression’ field,
d) Click on submit an idea
e) Add a title of your choosing
f) Add a summary of your choosing, but feel free to use: The ideas presented in this research idea are aimed better understanding and treating metastatic cancer across all types of cancer.
g) Add information to ‘what is the research problem’. Add what you’d like or copy and paste: The vast majority of cancer patients die from metastatic disease. There is a dearth of funding that focuses on met research, as well as general information that could be systematically collected in order to help our understanding of metastasis
h) Copy the bullets below into the ‘your proposed solution’
BULLET POINTS:
1) Add date of metastatic diagnosis to the designated medical record set whether original diagnosis, recurrence, or progression.
2) Implement broad changes to improve clinical trial accrual and outcomes: Better access to trials, release of preclinical data that might inform patients, timely results. More access to trial drugs through compassionate care.
3) Increase metastatic specific funding and more collaboration in research through the NCI
i) Add what you’d like to ‘How would your solution make a difference, or use: The ideas proposed here will help generate the data and knowledge that are needed in order to drive better therapies for people with metastatic cancer.
j) Press submit
This isn’t necessarily is short little exercise … you’ll need your thinking cap for about 20 minutes. You are welcome to look at my submission and copy it word for word, if you’d like. https://cancerresearchideas.cancer.gov/a/ideas/author/campaign-filter/byids/campaigns/17570
But, please. DO SOMETHING.
We lament the violence in this world and wring our hands and post temporary profiles and shout that we need change. People have been screaming at Congress (in the US) about the need for change.
But when it comes to cancer, it seems people don’t scream anymore. They simply shrug and say, "I’m not a scientist, so there’s not much I can do" and move on.
This is your chance! Don’t just move on! Since the time I’ve been diagnosed with this disease 4.5 years ago, 180,000 people have died of metastatic breast cancer alone in the United States alone. Metastatic cancers of all kinds? The number is 2,250,000!!!!!
WHERE IS THE OUTRAGE?
It’s now 6:00 a.m. Four people have died this past hour due to metastatic breast cancer. I’m going to shower and drive an hour to receive another dose of whole brain radiation. During that hour drive there and the hour drive back, another eight people will die. I’m going to live today. I just don’t know how many days I have left. Please, be a part of history and be a part of change. Help direct more research into metastatic disease.
Our team is comprised of Bob and Linda Carey, our advisors and volunteers. Without them, changing lives one smile at a time would never be possible!
