Terminal -Stage IV is terminal. Sorry this is not going to be this pretty blog post about how early detection saves lives and mammograms are our salvation. I am not going to talk about celebrations and last chemos as great as they are. I am unfortunately going to talk about death because that is what stage IV or metastatic disease brings. We need to flip the cancer page that started on the early detection/mammo page, that was a great beginning but we need a new chapter. One that dives into a chapter that no one seems to want to discuss expect those who are dying or dead and those of us who are sick of losing our friends. Back in the day we didn't discuss self breast care and now we do, kudos let's move the fuck on people are dying as in dead.
108 die every day from this disease. Yes you can die from breast cancer. No you can not die from it in your breast it is when it metastasis to other parts like organs and bones . Here is a little fact just because your cancer is caught early does not mean your cancer can not spread later so it is important to know and understand this beast, right? Now do not stop reading cause you are all freaked out educate yourself people and advocate like you did for early detection. About 6% are DX metastatic right out the gate, imagine that? "Hi you have breast cancer and it is terminal. Have a great day". I do not want to hear that is a small percent cause if that was you it would not matter that number would seem like a million percent. About 30% of us who have had breast cancer will become metastatic-yes you read that right and it is messed up. Here is the most messed up part, 2% of ALL the bullshit fund raising goes to metastatic research. What was that? Yes 30% are DX with stage IV yet we give 2% to research the freaking disease that is KILLING them. I am not making this up. Check Metavivor 100% of their money goes to research. We have made little advances in 40 years. you can try to argue that but the fact that a good friend dies in February then another in April tells me we are not doing enough not even close. What is so fucked up is that we do not give into metastatic research because people die. Yes that is part of the reason. "They" want a great result when researching and when you are going to have death that is not so good but if we do not start somewhere ho are we going to get to greatness? My sons took Seporah's death just as hard as I did and Anthony said "Don't they want to save her"? So I think that should be the question, don't they want to save people? Point blank!
Here is my thought and trust I am not a scientist or a researcher. If we actually gave money to STOP people from dying and then researched why they developed it then maybe they can figure out how it spread. I am no rocket scientist but you can not research shit if people are dead! Here is another thing that frosts my balls- those with mets can not enter most trials because they are "too advanced". Well they would not be there if we would have been giving the funding to research the frigging disease! My beautiful sassy wise ass friend said when she was alive "research me I have stage IV cancer"- Seporah was right but now she is dead so we can not research her and understand why she became metastatic at 32. When my aunt became metastatic her daughters asked me "Amie (yes that is what my family calls me) what did we miss?" Nothing I told them. My aunt had BC 15 years ago and her bones ached from tamoxifen and arthritis and from being 75. So no one was thinking mets but why weren't they? They should have went right to that. But that is the nature of this beast, she was DX on a Friday and 2 weeks later dead. I sat in her funeral and wondered is this my destiny? My dad was next me and I think was thinking the same. See if we do not do something NOW it actually is, maybe not mine but my friends and to me that is mine. When will we stop ignoring those with metastatic cancer and start listening to them since they are the ones dying?
I do not have mets so I do not know all that comes with this disease but I do know that those with it need our voice. And I know we have to listen to theirs. This is not about dividing cancer because I had Stage I and you had DCIS and she had Triple neg and he had Lobular and she is metastatic this is about getting together to stop the deaths. We had an out break in the winter of the flu and people lost their shit, 26 children died from it which is gut wrenching. Yet every year more than 516,000 die from metastatic breast cancer and we keep slapping on some pink bull shit and saying it is early detection and saves lives. Does that makes sense? Not to me. And I fucking love pink, but for NOT breast cancer you dumb asses.
When Seporah died I did a few things-1. swore I would not say she lost her battle and I would punch people who did. It was not in a battle she was in life. She not lose anything she died because cancer took over her body. 2. I said I would use my big ass mouth and keep her blog "Cancer messed with the wrong bitch" going around because you never know who her words could help. 3. I would not stop telling people that cancer kills. That those with mets die, they deserve more than a head stone they need funding to stop the death otherwise we fail them. That cancer is never pretty no matter how cute you try to make it, that all those campaigns offend us and actually do more harm for the metastatic community. The negate and make cancer look easy and sexy two things cancer is not. Which in turn make it hard to raise the funding needed to research.
Does being metastatic mean a death sentence right away? I am not sure but I do know that we need to stop talking numbers, start showing research that is working and start seeing all the faces and hearing the stories of those LIVING with this disease. Ask them what they want to be done with their DX, after all it isn't all about me and my tiara.