October 20: Obituaries, a MBC reality

In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.

One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.

I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.

This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary.  Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.

Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."

I want the obit printed in three newspapers.  The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.

I want memorial donations in my name to go to any of these beneficiaries:
 http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/


This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.

If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.

October 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

----

And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

October 2: The Difference

What is the difference between earlier-stage breast cancer and Stage IV?

The biggest difference is the prognosis. Once breast cancer becomes Stage IV, it is considered treatable, although not curable. There is no cure for cancer that has spread beyond the breast tissue. There is no chance of being able to declare themselves cancer-free, or cured, or have an end to treatment.

People in stages 0-III can reach a point of being cancer-free, and if they maintain that long enough, they can cease treatment and resume their previous life with just the occasional scan to remind them of the cancer.

People with Stage IV breast cancer do not have the option of stopping treatment and still surviving. We can and do cease treatment, but only when it is no longer effective, and the side effects diminish the quality of life to the point it is no longer worth it. When we stop treatment, it's usually when we enter hospice.

This is a rest-of-your-life thing, and the average rate of survival for Stage IV breast cancer is only three years. There are people who live ten, even twenty years past their diagnosis, and people who have only a few short months to come to terms with reality, but the average is three years. The number of survivors past the three year mark starts to drop the further away you get.

The difference is, the diagnosis is terminal. It's incurable. There is no 'end' to the treatment or the disease. Cancer is your new reality, for the rest of your life. You do everything you can to prolong it, but the chances are, it won't be anywhere near long enough.

The pink ribbon doesn't fit Stage IV. There are no survivors. There are only the fighters, and the fallen, taken from this world far too soon by the beast. We cannot "beat" this. We can think positive as much as we want, and while it can certainly improve the quality of life, it doesn't actually impact on the final outcome.

We are not survivors.

In the battle against breast cancer, we have received mortal wounds.

The difference is the words Hope and Cure are meaningless to us. And the worst part is, thirty percent of the people who believe in those words are going to find out the hard way just how false and hollow those words ring.

October 1: What Is Metastatic Breast Cancer?

What is Metastatic Breast Cancer?

Metastatic Breast Cancer is known by a small variety of names. Sometimes shortened to MBC, it is also known as Stage IV (4), or Advanced Breast Cancer.  But what is it, exactly? What does it mean?

invasive breast cancer with metastasis

When someone develops cancer, at any given stage, there is the risk of cancer cells breaking off and traveling through the circulatory and lymphatic systems and seeding new tumors called micrometastases. Although too small to be detected in any scans, this small foothold paves the way for developing metastatic disease. Chemotherapy is often effective in combating micrometastases, although it is not a guaranteed success.

Because the cancer cells that travel to metastatic sites still have characteristics of breast cancer and respond to breast cancer treatments, the disease is still called breast cancer even when it spreads to other parts of the body.  So, it’s not a brain cancer when breast cancer spreads to the brain; it is a brain metastasis from breast cancer.

There are four areas of the body where breast cancer is most likely to metastasize, although it is certainly not limited to these: Brain, Bones, Lung, and Liver. It can show up in just one location, or in several. There can be numerous tumors at the site, and there can also be smaller occurrences that are too tiny to show up in scans.

When breast cancer is detected and diagnosed, it is staged by identifying factors, whether or not it has shown signs of spreading, whether or not the lymph nodes and surrounding tissue is affected, and so forth. It starts at Stage 0, and ends at Stage IV. However, it's entirely possible to go from Stage 0 to Stage IV, as the tests performed might not pick up the presence of micrometastases. If there is cancer, there is a risk of metastasis, period.

Many women blame themselves for developing metastatic disease, thinking there should have been something they did, or didn't do that caused it to develop. However, that's not true. Research has shown that when it comes to metastasis, the concept of "early detection" doesn't apply. So all the funding that goes into early detection programs and mammogram screenings actually does nothing to lower the risk of developing metastatic disease.

Women do not die from cancer contained to the breast tissue alone. Women die when it spreads beyond the breast to vital organs. Thirty percent of all breast cancer patients who catch theirs at an earlier stage go on to develop metastasis. An additional ten percent are already metastatic at the time of diagnosis.

Stage IV, MBC, Advanced Breast Cancer, or in the UK, Secondary Breast Cancer, whatever the name it goes by, it's the form of Breast Cancer that kills 40,000 people in the USA annually, and that is a number that has not changed one iota despite the increased awareness of breast cancer. Early Detection isn't stopping metastasis. Mammograms aren't saving lives.

Pinktober is no longer even confined to October. Pink merchandise and Fun Awareness Programs happen throughout the year. It's taken over. Pinktober has become metastatic, without any metastatic awareness.

On Mammograms and Early Detection

Lori Marx-Rubiner, the President of METAvivor Research and Support, recently published an open letter to Amy Robach on her blog.

Ms. Robach spoke of the need for mammograms and aggressive treatment in order to beat breast cancer, and how breast cancer makes one stronger. Ms. Marx-Rubiner had an excellent response to this media myth, as well as highlighting some of the realities of metastatic breast cancer.

An open letter to Good Morning America News Anchor and breast cancer “survivor,” Ms. Amy Robach

Below are some key points that I found especially relevant.

I’m not saying mammography is bad, and as you say, it’s what we have. But let’s be thoughtful about it. We know that “catching it early” doesn’t necessarily make for a good prognosis. Many scientists believe that some cancers will spread and others will not, no matter how long they are in the breast. Many scientists also believe that if you are going to metastasize it is likely to have happened before initial treatment begins.

Let’s take, for example, DCIS. You can’t catch cancer any early than this “Stage 0″ diagnosis, where cells have yet to even leave the milk duct where they developed. While I can’t prove it, the trend I am personally seeing is that women diagnosed with DCIS are seeking aggressive amputations of their breasts and even ovaries to avoid the possibility of future disease. It is a fact that Stage 0 patients can and do metastasize – and it’s likely some do so before their DCIS is detectable. The same is true of women who have hereditary markers for cancer (BRCA1 and BRCA2 positive) – and these women have no discernible disease; rather they have a higher risk of disease.

And she also included a list of what we know about MBC, or rather, how little we do know.

We don’t know how many are diagnosed because unless one is diagnosed at Stage IV, we are already in the cancer registries and don’t get updated recorded again.

We don’t know how many of us are living with MBC for the same reason

We do know that about 30% of breast cancer patients will eventually metastasize. We know they will come from every single stage, including Stage 0, and we know that it can literally take decades from initial treatment before MBC shows up.

We do know that approximately 40,000 Americans will die from MBC this year, and that number hasn’t meaningfully changed in over a decade.

We also know what will save our lives: research.

We do NOT know why, when MBC accounts for 30% of patients and 100% of breast cancer deaths, our funding hovers below 5% of all breast cancer research funding.

Tired of "Hope" and "Cure"

Posted originally on the Young Survival Coalition Metastatic Disease forum 16 July 2014 - 08:54 PM

 

I hate being in the breast cancer club, but generally speaking, I like breast cancer sites. I like reading news on research, I like connecting with others who might be going through the same thing.

I know I'm a tiny part of the population (10%) that was diagnosed as metastatic as the initial diagnosis, and that only 30% of the rest of the breast cancer patients go on to be metastatic, and even adding up those two it's still less than half...

I'm tired of seeing so little about metastatic disease. I've ranted about this before elsewhere, but it bothers me. There's no cure for stage IV. The hope we have is hoping to live long enough to get a few more milestones under our belt, which is pretty much an "also ran" quality of prize as far as prizes go. So many websites focus on "cure", and "survivor stories" and I admit to being frustrated and annoyed with women who tell their stories as if getting a stage I or II diagnosis was the Worst Thing Ever. I know I should be ashamed of myself since for them, I'm sure it was, and it's not like they might not become one of the 30% but... it's still frustrating.

So much goes into early awareness, how about awareness for Stage IV? Breast cancer isn't what kills you, it's metastatic breast cancer. If all the cutesy slogans claim to be about saving lives, why isn't there more talk about mets?

I have ALWAYS had a personal issue with being ignored. It pisses me off like little else can. And I'm feeling ignored and the worst part of it is, it's not just me being ignored, It's the 40,000 of us - women and men both - who die each year in the US from metastatic breast cancer. Early Detection awareness doesn't do anything anymore. Everybody's aware of it. Such a paltry amount of the fundraising results go to mets research. Don't we deserve at least 30% I can make a case for 40%. In reality, we get Two Fucking Percent. Two.

I don't have much a point to this post. I'm angry and frustrated and ranting and feeling ignored, and it's making me feel spiteful and bitter toward those with earlier stage cancers. I want to scream "Don't tell me you have it hard! You don't know hard until you're stage IV!" which isn't fair, and I know this.

But at the same time, I'm handling my diagnosis far better than a lot of my mets sisters, and most of those got the kick in the gut with their diagnosis being a recurrence after they thought they beat that cancer bitch. I can't say I'd be handling this nearly as well if I were in their shoes. But I am handling it well. I'm the one who's consoling everybody, I'm the one who was fighting to keep everyone's spirits up, to keep them from getting too depressed or worried. I'm the one who was making the jokes and keeping things light and breezy and easy, I'm the one. And I'm the one who has to face that I might or might not have a few more years here and I have to give up my career goals and so much because of cancer.

If I'm handling it this well, and I'm getting frustrated by the lack of a voice, lack of awareness and acknowledgement of stage IV, frustrated by "I have Stage II breast cancer and it's so terrifying!" I wonder how other women with mets who've got it worse off than I do feel.

I'm sorry if I offended anyone and I do know it's not right for me to judge the circumstances of others, but it's just how I feel sometimes.

Treatments and cures are built on our backs, with our blood and tears. Is a little fucking awareness on breast cancer sites acknowledging the Stage IV people too much to ask?

Kohl's contacts Metavivor!

The power of social media (and the threat of lawyers) has come shining through. Kohl's called Metavivor, and the conversation was described as "amicable". They're expressing a willingness to listen.

Keep using the #TalkPink tag, and let them know what we want. We just want to be heard. 30% of funding should go to Metastatic Breast Cancer research for the 30% of us who develop it.

It's not just women - men get breast cancer too, and a disproportionate number of them develop metastatic disease due to the lack of awareness of male breast cancer.

Metastatic breast cancer is the form that kills 40,000 people - women and men alike - each year. Yet only 2% of research funding goes toward that.

Pinkwashing has created the mindset that with early detection, we're cured. 20% of the 30% were early detections, and yet the cancer cells still managed to slip under the radar and metastasize in the body. For 10% of us, early detection failed.

More and more younger women are developing metastatic disease, and for some of us, like me, it wasn't even diagnosed until it reached Stage IV mets. Pinkwashing has created an oversaturation of awareness and a loss of understanding of the risks and dangers. Breast cancer can be cured? It's not that easy nor that certain.

The Elephant in the Breast Cancer Room

Not so much an elephant anymore, because a lot of people are coming to realize just how hard Komen sucks. But not enough people realize that yet. It's still picking up steam.

First, they yoinked support from Planned Parenthood, which provides a full range of health care for women, including those below poverty level. Some PP clinics were even able to offer these services for free to women who couldn't otherwise afford them. These services included life-sparing early detection procedures for cancer.

They also have a history of suing anyone and anything they suspect might be infringing on their "copyright". They're not raising awareness for breast cancer and funding research. They're running a pinkwashing business and raking it in at the cost of lives.

Now, they're stealing someone else's campaign, and pinkwashing it into another cutesy movement, and throwing the lives of those who are dying under the bus in the process.

In 2012, METAvivor started The Elephant in the Pink Room campaign, to combat the pinkwashing and bring awareness and attention to the 30% of us with Metastatic Breast Cancer.

Now Komen has teamed up with Kohl's to bring us the Pink Elephant campaign. Because we apparently don't talk about Breast Cancer enough. Apparently we don't have enough Awareness. We need to Talk About Breast Cancer. And in the process, let's overlook those 30% of women while stealing their campaign because dying is, you know, just so depressing.

There's been other blog entries, a lot of them, about this travesty, and I cannot recommend strongly enough that you go read them.

Komen and Kohl's had a social network hashtag for this campaign: #TalkPink. The #bcsm on Twitter is doing their own Occupy Hashtag, dragging it into the metastasis mud and bringing awareness while keeping the spotlight on the douchebaggery of these two businesses.

Keep getting the word out. Boycott Kohl's until they drop the campaign. Defund Komen and run them out of town.

And support METAvivor, which has issued an awesome rebuttal letter to Kohl's over this incident.

Hi, I'm Susanne, and I have Mets

But then, you probably already knew that. I should introduce myself, shouldn't I?

I'm 39 at the time of this writing, and at the time of my diagnosis. In exactly 2 months, I'll turn 40. I don't do anything halfway, do I? Right off the bat, mets. The m-word. I'm a permanent resident of Cancerland.

Right now, it's not bad. I might even get a shot at the coveted NED award. No Evidence of Disease. It's not quite the death sentence it used to be. Not always. Sometimes it is. Sometimes you sit in that room and you're told something out of Hollywood: "You have cancer. You have six months to live." But sometimes you even get told that and end up thumbing your nose at that prediction for years to come. Sometimes you live for years with mets. It can sometimes be managed, but it will always be there.

Metastatic breast cancer kills. There's no cute way to soften that up. The clock is ticking, but we've got a chance now for more minutes added to that clock than used to be thought possible.

Five hundred twenty five thousand six hundred minutes... times two... times three... times twenty. Times more.

I've got a damn good chance at that more. I know there's also a chance I'll lose. But win or lose, I'm fighting this tooth and nail every damned step of the way. I'm not going to stop fighting. Even if I should ever have to ultimately make a choice to discontinue treatment to preserve quality of life, I'm still going to fight for every single minute more that I can possibly win away from this enemy.

In the immortal words of Bugs Bunny, as you know... this means war.

I'm not going to stop fighting for a moment. I have too much to live for, too much to fight for. We all do, of course. But no one's going to lose me if I have anything to say about it.

I'm realistic, but I'm not defeated. Optimistic, but not deluded. I'm digging in deep for the fight of my life, quite literally. I know this is the war that never ends, it just goes on and on, my friends. There is no "cure". This war will not end in a grand finale battle of pink ribbons and quippy quotes.

(Well, no, it'll have plenty of quippy quotes, we're talking about me here. I quip like I breathe.)

I'm metastatic.

That's an ugly word.

War is an ugly word.

But it's a damned beautiful life.