And just like that they are gone....

She looked around the room and said something like "next year one of us won't be here. I think it's going to be me".  Mandi said that. And just like that a year later she is gone.

Mandi Hudson died April 11, 2017

I will not talk about my own fear of recurrence I will only discuss what it has been like losing friends at a rapid rate. When I was diagnosed I honestly thought everyone lived that you didn't die from this disease (thanks pink bullshit for that lie). Then I met Lisa Adams via twitter and Annie Goodman and Seporah Raizer and my eyes were opened. I learned that not only cancer can come back but it comes back and attacks and kills. Yes I know I have many friends living through this stage 4 diagnosis 9 years out, 6 years and even 14 years out but what about those who die in a blink. Mandi was at the beach just a few days ago now she is gone just like that.

Seporah Raizer died April 12, 2015

Two years ago  MetUp crew decided to stage a die in at LBBC at the exact time I got a call from Mara, Seporah's sister telling me that she was dead. Ironic that she was one of the 113 that died that day as her friends were making a strong statement-actually it's so much more than a statement it is reality. This is something I feel society is turning their back to. 113 people dying daily is an epidemic, it is a crisis, it needs attention ASAP not “making advances” . How does 41,070 men and women dying this year not make headlines??

Jodie Lanchantin died October 27, 2016

Last year I went to LBBC mostly for Seporah because I wanted to honor her by continuing to be her voice.  I went to the Die In and even spoke about just that. About how I may not be stage 4 but I am mad, sad and demanding more for my friends who are. Our brilliant friend Mandi was there as was my sassy friend Jodie. Honestly, we had a blast! Laughing until we hurt and making memories for life. Good thing because they are both gone now. Mandi’s words haunt me for this year’s conference to the point I am not sure I can go.

When will it stop? When will we stop being from dying? I just don't understand why people keep dying. Where is the fucking cure we are all racing for? I know there has been advances in treatment but frankly, that's horse shit. If you were Jodie's mom or son or husband wouldn't you demand more? If you were Mandi's husband wouldn't you expect these advances to save her life? Let me explain that some of these fabulous people are not dying in a hospital bed, sometimes they are at the beach one day and gone the next. They are out with their children and have a heart attack. They are doing what they love and a blog clot takes over. When they die it does not say "metastatic cancer" it will say heart failure, liver failure, organ failure, blog clot. So how do they count? How is their death even measured? Sometimes I feel like people don't care unless it happens to them, I want that not to be true but I wonder.

Today I sit and cry at the death of a friend again. It does not get easier ever it gets worse. I want more for them for their families and for all my stage 4 friends living with this illness and dying for a cure. Do you want real numbers from someone living with this? Go read Stick it to Stage 4  and let Susan explain what a day is like.  I actually can't count on my hands how many people I know that  have died in the last two weeks, don't you find that ridiculous and heart breaking all at once?!?  I do. No tiara today nothing but a girl who had cancer and is trying to understand why she is  watching her friends die.

Photo credit The Molly Project

Beyond the Pink

What has changed this month in Breast Cancer Awareness month?

Lisa Frost, diagnosed in 2011 with Stage 3C lobular breast cancer, never had a lump.

Has it changed? I am not sure. I still see all kinds of crazy pink products out there that don’t make any sense and don’t seem to have any clear information connected to actual donations or charities. Just the other night my daughter’s cheer team had their “theme night”. They all dressed up in pink attire. I had a talk with her afterwards about what it actually meant and sadly it meant nothing. There was no education, no fundraising, no talks of breast cancer at all. It was “just fun and pink.” Everyone knows that October is breast cancer awareness month and everyone knows that it is associated with the color pink, but unfortunately a lot of the time it doesn’t have any significant meaning.

On a positive note, the announcement by VP Joe Biden on the Cancer Moonshot, coincidentally or not, gave this month’s awareness a boost I believe. At least in the breast cancer community. They are working on speeding up the federal drug approval process and making it easier for patients to take part in clinical trials. Metavivor, the non-profit organization that gives 100% of their donations to metastatic breast cancer research ‘commits to funding $1 million in metastasis research grants in 2017 and double that in 2018.’ That is great news for the metastatic community considering only 7% of all research goes to metastatic cancer (all cancers). It was actually nice that this news came out this month. It also came out right after the metastatic community made their march on the nation’s Capitol for more funding as well. So all in all this was probably a better October than most of them. Hopefully it is a trend and not just a one-time thing.

AnnMarie, diagnosed in 2012 with Stage 1 breast cancer after finding a lump herself.

Lisa, I agree with you about the pink. I loved pink before I realized what a marketing scheme it is. I see pink everywhere yet it is going to nothing. At the same time, I think it would be great to use this to discuss what some serious issues are. So many of us are suffering from post-mastectomy pain, lymphedema, post-traumatic stress syndrome and anxiety about our cancer coming back that it is time to discuss this part. Breast cancer is not tied in a pretty pink bow; it has some hard reality issues for so many. (Even divorce and bankruptcy but we never talk about that.) You mostly see “survivors” smiling and embracing this part of their life when the truth is far from that.

On the other hand, when Met Up organized the rally to capitol hill there seemed to be a shift. Not just Joe Biden and the Moonshot but more real talk about our Stage 4 friends. It took Mira Sorvino with Champagne Joy marching the steps of congress for a newspaper to pick it up. While I was thrilled and excited that the Washington Post picked up the story and posted it, it drove me crazy that it took a celebrity to make a headline. What about all my friends who have died why didn’t they make the news? Why doesn’t my friend who is dying get a story without celebrity status? Nonetheless, progress is progress and now that we have their attention where do we go from here?

What would an incredible “Breast Cancer Awareness Month” be?

AM- You know I am a little devil right? So my thought is to use the pink crap to talk! Just like you did with your daughter we all should be educating people on what the money is and is NOT doing. We can use that pink to talk about PTSD and get those living through it real help with resources that care. How about highlighting local non for profits that may not be researching but really helping their community with co-pays, gas to appointments, mortgage payments and more. And most importantly how about stopping the deaths. That is the research we need, stop those with stage 4 from dying. When we do that we could research how their cancer spread, what is working and maybe find a cure by making metastatic cancer a chronic illness.

I am not stage 4, I was an early stager. But the reality is that 30% of those diagnosed with breast cancer become metastatic. I cannot ignore that 30% because that could be me but more importantly it is my friends.

Lisa- I actually think that is a great idea. There are many needs where breast cancer is concerned. Without a doubt metastatic patients need more. The only breast cancer that kills, it goes without saying that they need more research, but there are other needs with breast cancer as well. There are all stages that have financial strains, survivors living with horrible side effects from chemotherapy, radiation, and surgery. There are women/men with young children and families that need child care, meal preparation, housekeeping, etc. Not everyone has a great support system. The list of needs can be long starting from diagnosis to treatment and afterwards. We may not always be able to get funding for research, but we might get local organizations and non-profits to donate or offer services to patients.

Together Lisa and AnnMarie give their thoughts on the future

I think that the one thing we can do right away, something that will plant seeds for the future of breast cancer awareness, is to talk to our children. I have 4 girls and you have 4 boys. We have started in our own homes talking about the realities of breast cancer and all that we have learned from our own experiences. Even though we do not carry the “known genes” for breast cancer that doesn’t mean our children are not at risk. We don’t know what genes will eventually be identified in the years to come. With my boys, I want them aware and educated on their chances of getting breast cancer. I want them to feel comfortable talking to their doctors. Regardless of the genetic factor there is always important awareness. I talk to my daughters about checking for lumps and early mammograms, but also that cancer is not always a lump and cancer is not always detected on mammograms. This information is so important to know. In the last several years I know that both of us have been teaching our children what the “Pink” really means. They need to know how important it is to take their health into their owns hands and be their own advocates for themselves and their future families. Not all doctors ask the right questions. Our children will have to ask them.

Knowledge is power when it comes to our health.

Stupid Dumb Breast cancer of the metastatic kind

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. 

#giveitup4mets

I get that everyone is always asking for money. Hell, I have a fund raiser every month. I get it. I also know that there is a large elephant in the room. Guess what- I am not a researcher ( I know you are shocked, but I am not). I know absolutely nothing about how to write a grant, what genes to focus on, or where to even begin. I do know, however, that 30% of those with breast cancer will develop metastatic cancer, meaning it will spread to other parts of their body. Sometimes fast, sometimes slow, either way taking their life in some form. These lives are those of women and even a few men that I have become very close with.  Isn't that number too high for you? 

Yes, donating money is always a big deal. Who do I give to? How much can I afford? What will my money actually do?  METavivor is a non-profit that is dedicated to those with Stage 4 breast cancer. "METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research." According to the METavivor page ,"every fourteen minutes someone dies from breast cancer." What they are doing is making a difference and you can, too. What can you give up from your life to support the research?  

Can you "give it up"?

Here is the deal. Video tape yourself giving up a little something- a coffee, a lunch (couldn't you bring it to work one day?), a drink at the bar that you don't need, that shirt that was on sale at Target.  These are things you could do without for a day, right? What we need is more cancer research! If you can't give up something, how about some time? Write a note of encouragement, or sit down and inform yourself of the facts. Metastatic cancer hasn't had a decrease in the numbers in forty years. Why is this acceptable? You don't need to mow the lawn this week (my husband thought of this), dinner at that swanky restaurant is not a need... but research is.

The Otis family decided to give you some ideas on how to make this a family adventure! We gave something up, and in the process my kids got a better understanding about metastatic cancer. They make me proud.

What can you give up? Post it on Stupid Dumb Breast Cancer FaceBook , the METavivor Faceboook or email me and DONATE on METavivor page. Let them know SDBC sent you.

Step by step

1. #giveitup- what will you give up? A candy bar, coffee, a night out? Every dollar counts.

2. Have fun making a video and get your family and friends involved. Let them know you are "giving it up" for metastatic breast cancer. Make sure you ask a friend to give it up, too!

3. Post that video with the # metavivor #sdbc #giveitup4mets on all those socieal media places. Let your voice be heard!

4. Now this one is important: DONATE to METavivor. Every single dollar makes a difference. Together all our dollars can be the research and the voice that those with stage 4 need.

***disclaimer Mimi got her coffee, no cupcakes were ever eaten (the case wasn't even full so we were not  tempted), Tom LOVES washing the car so that was rough, Sam does NOT have a British accent, Ben will be riding the big wheel to High School and Anthony really isn't getting a new back pack.

Rebecca #giveitup4mets GO SU!!!

Sadie #giveitup4mets desserts who needs them we need research!

Missy #giveitup4mets video loves coffee  but mets research is more important