Posts tagged #metastatic breast cancer

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

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

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

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.

Cancer is offensive

If you find offense in this how can I possibly accept myself

If you find offense in this how can I possibly accept myself

I could start with I am sorry you are offended but fuck that! Sorry NOT sorry as the youth of today says. I had a picture flagged and removed from Facebook that should not have, it is within the guidelines. But someone found it offensive calling it nudity. It was a reconstructed breast which is FAKE with a prosthetic nipple FAKE again. I try to figure out who would report it and my first thought is someone who has never had cancer or any illness effect them so deeply. So let's start there shall we?

 

You know what is offensive? Being told you have a choice of having your breast amputated or a lumpectomy that may "deform your breast" that is exactly the words I heard. You have to choose one and which ever you do will change your body and mind for life and you have no choice but to pick one. No one explains how destroyed you will be over this in the end you just have to do it. Offended?? Having plastic tubes come out of you to release fluid from your body that is offensive, humiliating and inhuman. Naked at every appointment having every doctor and nurse look and feel your once private breasts, that is what nudity is now! The fact every woman I talk to spends at some point time crying in the shower because of how cancer destroyed their body as imperfect as it was, is totally offensive. 

I am the one that should be offended

I am the one that should be offended

 

I am offended that my "boob job" did not work and I had to have a 10 hour surgery to get some sort of breasts. Now I know now I did not have to have reconstruction but at the time I thought I would "offend" people without breasts and I did not have the courage to go flat. But that is a different blog post. I am offended that because I did not see these options on other woman I had no idea what  I could do. I am extremely offended that I had to have my nipples removed which I never knew would make me feel so blank. That my body is covered ins scars that remind me daily I had CANCER.

Offended that I am a rag doll now sewn together   

Offended that I am a rag doll now sewn together

 

Offensive is having your body radiated to make scars, cancer, pain all dissipate just a little but never terminate it completely. I am so offended that I lay naked on a table while a machine burns my skin, I lay there alone because it is too dangerous for others to be there with me. As they close the metal door I am scared and naked in all senses of the word.  Or the people that lose their hair because of chemo as they on the bathroom floor vomiting from the drugs being pumped in them. That is offensive!

Two days after surgery and radiation, this is offensive to me!

Two days after surgery and radiation, this is offensive to me!

 

Cancer offends us every time we have a scan and we wait anxiously for results that will change our life. I am offended because I know that the answer could mean death which scares me to my core or paranoia which makes me mildly embarrassed.  Cancer is offending me and my friends every time someone is DX metastatic or dies. Why isn't this the most offensive? I am extremely offended that society does not seem to want to acknowledge this and would rather paint a pink world for us to look at where everyone survives and gets a boob job. I am offended that they took my color pink and made it about cancer, a color is not a disease. 

Cancer killed this beautiful friend, that is where people should be offended. 

Cancer killed this beautiful friend, that is where people should be offended. 

I am so offended that people do not take the the time to understand that mastectomy pictures, nipple tattoo, nipple prosthetic on a fake breast are healing. When we see the image we see our self then we realize we are not alone.  In that image we are all the same. We see that we can get to the next step that the surgical glue goes away and somewhere in there we are still us, a new creation yet the same. Looking at these takes the scary out just a little helping us prepare for what we need to do next. 

I am saddened and offended that I now have fake nipple and breasts both with no feeling

I am saddened and offended that I now have fake nipple and breasts both with no feeling

 

If you had cancer and these offend you than couldn't you just move on? Just like we all handle cancer treatment different we need to respect how we heal from it. Maybe you are offended about the doctor dancing through her mastectomy did it occur to you to find out why she needed that? That person sobbing every day does she offend you? It is how she is healing because her personal life is a mess on top of cancer. That girl that wore 6 inch stilettos through her surgeries and treatments-that gave her the courage to stand tall during it and not let her family see her fall. And those images that you find offensive and consider them nudity.......they are helping people survive an incredibly debilitating disease. By calling them offensive you are saying that they are and only hurting them more. Was that your mission?  If we do not accept these images how can we accept ourselves and move pass what is happening to our bodies?

I really thought we were pass this but apparently not. My 15 year old son does not like when I post the images because well he is 15 and is worried that someone may hurt my feelings. But he respects them and knows they help a lot of people. My 13 year old is proud that we all have the courage to post them because he sees strength. Neither see sex or nudity or are offended. I leave you with this if two  teenage boys can respect and see the truth in them why can't others? 

Laughing is not offensive but sitting there with tubes, amputated breasts and the fear they did not get all the cancer is by far offensive   

Laughing is not offensive but sitting there with tubes, amputated breasts and the fear they did not get all the cancer is by far offensive

 

 

 

 

It's a Cancer Thing You Wouldn't Understand

I pulled a hangnail last week my finger and hand swelled. It's a cancer thing you wouldn't understand.

I cried when my online friends Jill and Carollynn died and there was nothing I could do. It's a cancer thing you wouldn't understand.

I hate looking at myself in the mirror between the scars and chest I do not recognise me I can not look.  It's a cancer thing you wouldn't understand.

My body has changed so much I hardly can wrap my head around this rapid change nor do I want to. It's a cancer thing you wouldn't understand.

I have scans and blood work coming up and it makes me crazy with worry. It's a cancer thing you wouldn't understand.

I do not sleep at all even with medication. It's a cancer thing you wouldn't understand.

I am pissed off that everyday about 128 die from metastatic disease and the world just sits and watches. It's a cancer thing you wouldn't understand.

I can not fly or exercise without wearing a sleeve otherwise my arm swells. It's a cancer thing you wouldn't understand.

Sex?? BLAHAHAHAAHAH what was that again? It's a cancer thing you wouldn't understand.

My veins are shot getting blood drawn is painful. It's a cancer thing you wouldn't understand.

Lymphedema in one arm cording in another. It's a cancer thing you wouldn't understand.

My family worries about me so much I am sick of hurting them this way. It's a cancer thing you wouldn't understand.

I feel guilty I am alive. It's a cancer thing you wouldn't understand.

I forget what I was going to say. It's a cancer thing you wouldn't understand.

I am sick of hearing "because of your history we have to rule out cancer". It's a cancer thing you wouldn't understand.

My boys have  cancer on their medical history and it makes me sick. It's a cancer thing you wouldn't understand.

I have more doctors than I ever thought possible. It's a cancer thing you wouldn't understand.

PSTD is real and I have it! It's a cancer thing you wouldn't understand.

I have pain yet numbness in all my surgery sites daily yet you can not see my pain. It's a cancer thing you wouldn't understand.

I am scared of what radiation, scans and injections have done to my body. It's a cancer thing you wouldn't understand.

I feel like I am 90. It's a cancer thing you wouldn't understand.

 

 

Maybe you are reading this and you do understand because you had cancer. I am sure you can add many more to my little list. But if you are reading this with no cancer in your life first great I am so happy for you. Second, wake the fuck up! Cancer is not tied in a neat package, cancer does not end, cancer can kill. This is not about whether you can handle the truth or that you do not know how to deal with all this. It is about you understanding that this does not end with a simple surgery or with chemo or radiation. Surviving is an overrated term, we are living through this DX. Some are dying with it. It is time to bring these topics to the front page and stop hiding behind ads of cancer prevention bull shit. We are preventing shit we need to make ourselves strong machines so that we can attack our DX the best way possible.

Understand just because you have "moved on" from cancer the person dealing with it has not. Respect them for their sometimes unseen pain.  This is not a boob job do not make this sexy because sexy is not relevant. Respect the fear of recurrence do not tell us it can not come back, we know different. Honor our friends who have died do not tell us they lost their battle, they did not lose anything. Know that we are scared and have every right to be, stop telling us it will be ok. I know this is hard for some but say nothing just a hug. Keep your hands off my tiara I will smack you. Do something bigger than baked ziti. Rides, babysitting, laugh with me or donate to research not walks. We can make a change if we just put our voices together to be louder and stronger for all to hear. 

It's a cancer thing you wouldn't understand, but you could!





I love PINK

The color you jack asses! Pink is a color that is all nothing more nothing less. It is not meant to cure shit or doing anything more than be a color that you either like or do not. Unfortunately breast cancer took the color and made it into a marketing game, a money making profit off our cancer. Yes, it did do not try to deny it. They took a simple color and made anything from pens to garbage cans to vibrators to KFC buckets. Then they took the pink shit and made it sexy cause breast cancer is so erotic. NOT!!  How does taking your bra off for breast cancer do anything for us who can not even wear one because it is too freaking painful!!!???

You take a month like "Pinktober" and you think great time to educate, tell stories, raise money for research and none of that happens. It is all pink ribbons and happy celebrations and selling a bunch of plastic crap. I know that is all the celebrations are fabulous and should not be ignored and not what I am suggesting. Here is a thought what about those awesome stories of those who were given 2 years to live and are going on 5 or how about the men who get breast cancer or maybe talk to someone who lost their job because of this freaking disease and listen to how they plan to get on their feet again! There is a whole culture that is being ignored just because they do not fit the pretty pink ribbon, I say we untie that and listen to their stories! Wouldn't be amazing if all cancers got together and entwined their stories, how powerful that would be?

I actually believe that we can use the pink ribbon to talk about all this but society has screwed it up so bad that we become too divided. We as a culture only want to see a smiling woman saying "I DID IT" I am cured she elludes while she is dressed in head to toe in my beautiful pink color. While the reality is that is probably has PTSD, scars she cries about, friends she has lost, fears that her cancer will come back (30% change it will FYI) and that she is changed because of cancer. The sexy ads are honestly for me the worse, it makes me so angry that I go crazy. That image puts a nasty pink vomit taste in many people's mouth, a sexy gorgeous women who clearly did not have breast cancer in a super sexy bra saying "do you do a self breast check". Take a minute and understand why that is so offensive. When you make this sexy or trivial in ads and promotions it makes the disease less serious in so many people's eyes therefore people can not heal the right way. We are struggling with the loss of our sexy and media is shoving breast cancer sex down our throats, what the fuck are they thinking?? AND research is not handled right as a result because they can not sell research as "sexy" or pretty pink ribbony crap, you dig?

Breast cancer is never not even for one single moment happy or pretty. It is scary as fuck, it scars you both physically and mentally for life. It takes your body and mutilates it so bad you your self esteem is altered so bad that affects even your desire for sex with the person who has loved and supported you through all this. Breast cancer takes your hormones and rips them out and demolishes you which in turn makes most so depressed they can not see straight. This all happens so fast you can not even put it to words until you are years out and by then your loved ones want you to "move on" yet you are still in doctor appointments, FOR LIFE. Explain how that can be tied in a perfect pink ribbon?

So, while I get that this month is supposed to raise awareness it is simply done wrong there is no denying it. If we could all find ways to get through this month and really open the chapters to NEW discussion what a month it would be. We all know about mammo, self breast checks right? But tell a dude about this maybe he does not know. Tell a story about someone with metastatic cancer and how she or he is LIVING through their DX. Talk about triple neg or inflammatory. Or maybe discuss one one the many points above and how you think we could change or help someone in the middle of this. The point is that the shit we are doing is not working right?! What are we racing for? I am so confused. But that is the next post trust me there is a story there. I am all for the sisterhood  the bonding is what we need to get through this and being proud of yourself. I am not for selling this disease to make a buck and there is a difference and there is harm if you do not watch it. I ask that before you buy anything think about it and maybe find another way to show support and love because most pink crap isn't cure shit right? Not everything goes to real research you have to know what you are buying. Unless it is a pink tiara then please do and send it my way!

 

Look I just want my freaking color back. I want to wear pink and not have someone say " oh do you support breast cancer?"

 

"Why Yes I donated two and so much more!"

 




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.