October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

October 29: Dumb Stuff People Say to People With Metastatic Breast Cancer

Today, I thought I'd share one of my favorite videos. It's a collection of dumb and broken shit people have said to people with Metastatic Breast Cancer. You might recognize some of them from the Bingo game card featured on October 8th. Some are just pinkwashed ignorance, while others are jaw-droppingly callous.

One of them that irks me the most is the implication that if we have metastatic breast cancer, then we must not have been taking good care of ourselves. We must not have been exercising enough, eating the right foods, drinking the right beverages, doing the right thing.

Have you heard yet about the Bald Ballerina?

At age 23, Maggie Kudirka, a dancer at Joffrey Ballet School, was diagnosed in June of 2014 with breast cancer. But not just breast cancer. She was diagnosed right out the gate with Metastatic Breast Cancer. And she is a ballerina, and has been since the age of four.

In case you're not fully aware of how much physical training and work goes into being a ballerina, this Under Armour advert highlights what a grueling sport it is. Look at the shape she's in. That's normal for a ballerina. If someone so young and so fit could get metastatic breast cancer, what does that say about the rest of us? It's not our fault.

We might still have our hair. We might "look fine". We might even be able to continue working. But that doesn't make what we have any less serious. We have Stage IV Metastatic Breast Cancer. There is no cure. There is no point where we are "finished" with treatment if we want to continue to live a bit longer. This is as serious as it gets. We might seem fine but we will never BE fine. This is our new reality.

And no, you can't have my flat-screen TV when I die. What is wrong with you?

October 27: Guest Blogger Knot Telling

Guest blogger Knot Telling is sharing with us another perspective of someone else living with metastatic breast cancer. You can follow her journey at her blog, Telling Knots.

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Capital Punishment and Pink Rocks


Condemned prisoners in Japan are not told the date of their execution until the morning of the day itself. According to many experts, this is a contravention of the International Covenant on Civil and Human Rights. The parts of the Covenant that concern us here are Article 7 (“No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”) and Article 10 (“All persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person”). In other words, not telling condemned prisoners when they will be executed until a few hours prior to their death is considered to be inhuman and an affront to human dignity. Torture.

I had an immediate visceral reaction when I first read a 2007 BBC News report about the Japanese system of capital punishment, and I have never forgotten it. Living with MBC is not unlike living under sentence of death and not knowing how long you have until the sentence is carried out. The stress can be a kind of psychological torture.

There are many kinds of physical torture. It’s been reported that regimes such as the Nazis in the 1930s and 40s, the gulag in the Soviet Union and North Korea today used forced meaningless labor as torture, tasks like carrying heavy rocks from one place to another and back again. Sometimes the stress of living with MBC feels like carrying around a load of rocks.

Yes. I sometimes feel as though an arbitrary authority is forcing me to carry large rocks from one place to another. Sometimes my load is reduced and I can breathe more easily, relax my muscles, sleep through the night. At other times, I have the sense that more rocks are being added to my burden.

Save the tatas!
A rock.

Early detection of breast cancer saves lives!
Another rock.

Breast cancer can now be cured!
Another.

If you have a positive attitude you won’t die of cancer!
And another.

Buy this pink teapot/garbage can/mouse pad for breast cancer awareness!
Yet another.

Every October my burden gets so much heavier. Listen:

*Breast cancer is not about breasts. It is a horrible disease that kills both men and women. It is not about saving sex appeal; it’s about saving lives.

*Early detection of breast cancer can mean the treatment is not as difficult, but it is no guarantee that it won’t recur. In fact, about 30% of everyone who has breast cancer—regardless of the stage at diagnosis—will have a recurrence and metastasis.

*There is no cure for breast cancer. None. There is treatment that can lead to remission or an NED (no evidence of disease) condition, but there is no cure. No one knows who will be in that 30%  and who will not. For the unlucky 30% there is no cure. We will have breast cancer until we die, probably of breast cancer and its complications.

*There is no scientific research that shows any relationship between mood or attitude and recovery from cancer. At this point, there is no way to predict with any degree of scientific certainty who will live and who will die. Some cheerful, positive people die. Some miserable, complaining, angry people recover. Some people who have variable moods live and some die. Mood and attitude do not correlate with, let alone influence, recovery.

*Pink merchandise has become a common marketing ploy, especially in October. Much, if not most, of the pink “breast cancer awareness” merchandise that is sold profit manufacturers and vendors and no one else. If you like pink, go ahead and buy it, but if you want to contribute to the fight against breast cancer be under no illusions. Unless you have verified that a reasonable portion of profits goes to a reputable foundation or charity, make your donation directly.

The pink rocks that are added to my burden are just as heavy as the others.

Even if I didn’t have those extra rocks to carry around, the stress of this indefinitely postponed yet certain death sentence is psychological torture. I am in my eleventh year of it, and I am tired.

I am tired of pain and I am tired of the narcotics that treat it. I am tired of having a permanently compromised immune system. I am tired of massive fatigue.

At the same time, I want to live every day that remains to me. It is the frustration at not being able to do that the way I’d prefer that makes me tired and angry. Nevertheless, I have taken steps to have the best quality of life I can. I have made arrangements for people to come and help me with the tasks I can no longer do (housework, garden work, errands in town). I enrolled in a distance learning course. I stopped exams and treatment, other than comfort measures like pain management.

In other words, I found the little power that is left to me in the face of the arbitrary “authority” (fate? genetics? environment?) that condemned me and sentenced me to the forced labor of carrying rocks until the unknown date of my death. I draw on that power as much as I can—some days more, some days less—in order to live as well as I can until MBC causes my death.

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 19: Discovery

Another question from Facebook.

How was it found? - Cathy

 Not by a mammogram, I can tell you that. I first found it when I was on my way back to my car from a funeral, with my arms crossed over my chest against the cold. There was a spot on my breast that started aching, and when I put my hand over it, I thought I felt a lump. But it was hard at the moment to be sure of what I felt with the density of the tissue and the body reacting to the cold.

I couldn't find it again later, so I forgot about it. I noticed it again when my breast started itching, and I realized there was a small lump inside that felt painful and itchy. That was exactly the case when I had a cyst in my late teens, in almost the exact same location on my other breast, so I didn't think anything of it at first.

It seemed to come and go along with my hormonal cycle, sometimes disappearing altogether as far as I could tell during certain points. While I still had health coverage for a bit of time during this period, the lump was not always present. Taking into account the pain, the itching, and the come-and-go nature of the lump, it seemed far more likely that it was benign. Keep in mind too that I was several years shy of 40 at this point.

By the time it was more persistent, I no longer had medical coverage, and couldn't afford a trip to the doctor, let alone any tests they might want to run. So it remained a cyst in my mind, and I just had to wait for it do like the other one did, rupture and drain on its own. I finally found a medical provider who I could afford while I was on worker's comp due to an injured wrist, and went in to have it drained.

That's when I found out that with a detectable lump, I qualified for the state's Every Woman Matters program, even though I wasn't yet 40. I had looked over the website time and again in the past and there was nothing to indicate to me that it would cover the cost of the biopsy and follow-up if I had a lump even if I was under 40. That would have been a game-changer, for me.

I didn't have a mammogram until the age of 39, after the cancer was already diagnosed, and even then, the mammogram on my right breast was so inconclusive due to the density of the breast tissue that they had to resort to an ultrasound to verify that there were no lumps present. That same day, I had a PET scan. A follow-up biopsy to my liver a few days later confirmed what the PET scan indicated. It had already metastasized.

October 17: How I Reacted to My Diagnosis

On my Facebook, I opened myself up to questions for entry fodder for this month. Here's one of them.

What was it like when you first heard your Metastatic diagnosis. How did you cope? First thoughts? First days? First month? Now? -Beth

 When I first heard the words Stage IV, it wasn't entirely a surprise, but for the wrong reasons. My primary mass was 6 centimeters in size, and I thought that size was related to stage. It can relate to stage sometimes, but not always. I assumed because the mass was big, that meant it would be Stage IV. I didn't fully understand what that meant.

I thought I was still able to be cured. I thought I'd be fine, that I just had to power through harsher treatment, more chemo, more surgery than an earlier-stage patient might. You could say that I coped with denial. I wasn't dying. That couldn't be true. I would be just fine, just you wait and see.

I argued with my oncologist. I told him to mark my words, I'd be cancer-free, I was strong enough to beat this. Bless him, he didn't argue back. He knew I'd come around sooner or later, and that it wasn't the time or place to push the issue.

I walked a very fine between calm and screaming despair, like walking a tightrope. I put on the bravest front I could muster in an effort to convince myself that I would be okay. Whenever my thoughts started to run wild on me, I brought them back under control by reciting the Litany Against Fear from Frank Herbert's Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

Jen and I at the salon when we got our heads shaved together.

 I fully and wholeheartedly believed, thanks to the pinkwashing, that I just had to be strong enough, brave enough, tough enough to fight this and beat this thing, and I would be fine.

Coming to the realization that wasn't the case was harder.

I was still convinced I'd be fine a month later, but I was starting to think of it more as a simple, chronic, and wholly manageable disease I'd just be on medications for for the rest of my life. I was starting to achieve some inner zen though, around the time my hair started falling out and I went in to have my head shaved.

Coming to terms with my own mortality, I wrote about that back in the early days of this blog.

I've come to realize that this is essentially a chronic illness. There is no cure. I will have cancer for the rest of my life and while I want that rest of my life to be a long, long time, I'm aware that it might not be, despite everything I do.

That's kinda fucking terrifying to realize.

I've been adapting to this understanding in bits and pieces. I've skirted around and cast indirect glances, like watching a Medusa through the reflection of a shield, by coming up with a soundtrack for my funeral, and I've looked it straight on without really thinking about it and wrote my own obit. I had to ease into the acceptance of this possibility the way you ease into a too-cold pool, or a too-warm hot tub. Inch by cringing inch.

But like the pool or hot tub, once you're submerged, it no longer feels as bad as it did going in. Sometimes it's even a comfortable feeling.

I think the imagery of Medusa and the shield is the best way to describe what it was like for me to face my own mortality. I couldn't look it directly on, or I'd turn to stone. I had to look at an indirect reflection to be able to face it. Once I was able to face it, I slowly became accustomed to it.  As I became accustomed to it, it lost its power to turn me into stone. Now, I can look at it straight on and say "I'm terminal" without a rush of panic or stammering excuses.

I'm doing fine now, better than fine, actually. According to my oncologist, I'm doing great. I do attribute some of that to my ability to achieve that calm zen I felt during my time in chemotherapy, staying calm and chill and upbeat. Positive thinking won't cure my cancer but it did make the side effects less horrible overall.

Your Singing Mammogram

Last night, I hopped onto Twitter just to check what was going on over there since Facebook was quiet and was boring me, and I caught a tweet made by Lori, the president of METAvivor.

I clicked on the link to see the video, and my jaw dropped. I'm deaf, I couldn't even follow what was being said, and even taking that into account, what I saw was so mind-numbingly offensive that all I could do was make incoherently profane sounds and anatomically-impossible suggestions for the people who thought it up. For your viewing "pleasure", it's below:

And of course, this comes on the heels of me bitching about the sexualization of breast cancer. I've been getting bits and snips of this travesty from other people, trying to formulate a post of my own about this. I seriously can't even with this video. Every line I learn, my brain hops back into incoherent rage mode. But this is what friends are for. Lori made an excellent post of her own, #AllKindsOfWrong, and Sara, the best maid in our wedding party, put together a line-by-line of what's wrong with this video.

Ooooh, wow. Where do I begin? First off, that was the longest, most annoying minute of my life so far today.

Right from the start, it annoys me. The nonsense-syllable intro? "Boobs, ba-boobs, ba-boobs, ta-ta tas, boobs..." Oh, -please-.

"Dudes and babies love 'em,/It's fun to squeeze and hug 'em..." Yes, thank you. Thank you for reducing my worth to a pair of breasts, on legs. Because the rest of me is not huggable at all--just my breasts. Thank you for reminding me that they have two purposes: For Being Groped, and For Feeding Sprogs. Because it's -certainly- not enough to just let them be 'a body part'.

I could be mishearing this one; it's a bit mushy: "Big cups or double-Ds, E and, we love 'em Gs..." Yes, because mammoth boobs are the ONLY ONES THAT MATTER, duh. Anything smaller than a D-cup? Apparently, you do not matter. (Note: the line is actually B-Cups, but the comment still stands. A-Cups are ignored, and oddly, C-Cups are only implied. The less common DD, E, and Gs are sung about because massive boobs.)

"They jiggle in loose tees/And extra-perky in the breeze!" I don't even. Again with the implication that breasts serve no other purpose than to please men, and we are -obligated-, as women, to entertain them with our breasts.

"Depending on the rack,/They sometimes hurt your back." I don't know. I just found this line, sung by a bunch of guys, who will never have to deal with that sort of issue, to be incredibly condescending. Almost along the lines of the "It's all in your head!" sympathy they give when women suffer from PMS: "How could you possibly SUFFER from something as awesome as BREASTS?! You must be imagining it."

Then there's this nonsense mumbled stuff about the pleasure of removing your bra after a long day. Whatever, dudes. It comes off as them chuckling and head-patting...oh, those women and their brassieres...more lady-sorcery we do not understand! BRAS. HOW DO THEY WORK.

"It's important and we're begging you, please.../Take care of those boobies!" If the sentiment was, 'Regular breast exams are a critical component of your preventive care regimen', then, okay. I can accept that. But the entire feel--no, I take that back--TAINT of this video gives the undercurrent of, 'If you get breast cancer, you'll have to get a mastectomy, and THEN what will we ogle and squeeze?! YOU OWE US, LADIES.' And maybe I'm just reading too much into this. But to me, the video -oozes- light-hearted "tee hee, look at us, we're so cute!" There is no 'serious reminder of health issues'. And it comes off as 'it's not THAT serious', too.

"And please don't forget to share this reminder to check your pair." Most women I know would be offended by this, why on earth would I share it?

Ugh. I feel dirty now.

 Another thought I had, after stepping away from that morass of everything tacky and tasteless: it ONLY concerns women who have not been diagnosed with breast cancer.

Maybe that's the whole point, and maybe I'm missing that point, and maybe it's just that, a year ago, I wouldn't have even given it a second thought. But, knowing you, and being here with you as you go through the treatment and the stress and the heartache of dealing with breast cancer? It kind of -cheapens- what you're going through. Turns it into a song-and-dance number, makes it sound like this funny, cool thing ladies should do. Oh, and if you get breast cancer? You horrible harridan, you DID NOT TAKE CARE OF YOUR BOOBIES. HOW. COULD. YOU. WE EVEN SANG AND DANCED ABOUT IT!

To me, Prevention, Treatment and Management should be bosom buddies (no pun intended). One should not be given the spotlight, while the others are overshadowed, because prevention is the fun one! It's the pretty one that isn't sick yet! What's the point of prevention, if no effort is made toward exploring treatment options and efforts to improve the quality of life for people (yes, men and women both) who suffer from breast cancer?

AND THAT'S ANOTHER THING I just thought of. This whole video COMPLETELY excludes the men, completely. It doesn't cover the fact that they're at risk, too, and makes early detection seem like Womany Sorcery Stuff, No Boys Allowed. And that's a crying shame, because what do these poor men do, when they find themselves adrift in a sea of pink, with no lifebuoys left out for them?

Susan G. Komen, you disgust me, in ways I never thought you could.

I couldn't have said it better myself. And in case an example is needed to prove that one doesn't have to resort to offensive, condescending, ninnyhammer claptrap to promote awareness, here's the video from METAvivor.

October 15: The Problem of Pink Goalposts

A year ago today, Business Insider released an article highlighting some rather questionable business practices.

For the last few years, throughout the month of October, football fans have grown accustomed to seeing pink everywhere, and merchandise advertised to go toward breast cancer research can be purchased.

After running the numbers for the cuts taken by the NFL itself, by the retailers, manufacturers, and the American Cancer Society administration, article author Cork Gaines arrives at a shockingly low number for what actually goes toward research. 8.01%.

That means if you spent $100USD on Pink NFL merchandise, only eight dollars and one cent would go to research. Fifty dollars goes to the retailers themselves. Manufacturers take thirty seven dollars and fifty cents. That right there totals up to eighty seven dollars and fifty cents out of your $100 purchase. And of the remaining amount, still less than ten percent goes to breast cancer research. The way it's set up isn't to get research funding, it's a marketing ploy.

It should also be noted that the most common place for pink NFL merchandise to be sold is through the league's online store, individual teams and at the stadiums. Therefore, the NFL or the individual teams act as the retailer in this case and therefore receive a portion of the 50 percent that goes toward the "retailer."

By putting the spotlight on the pink ribbon, the NFL is boosting its corporate image and gaining female fans, as well as lining their own pockets.

If you want to buy the pink NFL merchandise for the sake of having it, then by all means go ahead. But don't delude yourself into thinking you're contributing to breast cancer research. If you truly wish to make a difference, look at the product you might buy, look at the price tag attached, and donate that amount to METAvivor's campaign, #GiveItUp4Mets. 100% of your money will go toward metastatic breast cancer research.

Which is worth it, another t-shirt, or hope for 155,000 Americans who are living with metastatic breast cancer? And isn't your money worth more than 8 percent?

October 14: Save Second Base (Or: The Tits Are What Matters)

Save the Ta-tas! Save Second Base! Save the jiggly things on a woman's chest that we like to call by cutesy names.

What about saving the women?

This is not going to be a fun post. I'm going to soapbox on another issue that's worthy of an entire blog unto itself: rape culture.

What exactly is rape culture? And yes, before you might protest, it does exist. (Trigger warning for that last link for examples in media) What makes rape culture possible is the cultural norm of objectifying women and turning sex into a punchline.

Why is breast cancer the most marketable illness around? I mean, for fuck's sake, we have pink fracking drill bits (courtesy of SGK, of course. Who else?) Yes, breast cancer kills 40,000 women and men per year in the USA alone, but metastatic disease is hardly touched upon throughout the month of October, much less year-round. The pink ribbon is a cash cow. Why?

Yes, men get breast cancer too, but it's still rare compared to the number of women who get it. Why is the NFL merchandising pink ribbons? (Tune in tomorrow for that fiasco)

Breast cancer is the only disease that affects a publicly acceptable part of a woman's sexual presentation. They're called cutesy names, there's an entire restaurant chain devoted to them (I'm looking at you, Hooters) and the point of it all is to objectify women.

I've heard breast cancer self-exams being joked about as 'groping'. I've heard of it being used as an excuse to grope. "Don't mind me, I'm just checking you for breast cancer!" Grope a tit, save a life. (Never mind the fact that self-exams don't actually save anyone's life; if you've been reading this blog this month, you've learned by now that one out of every three women who find theirs early go on to develop metastatic disease.)

"Save Second Base". Who thought that one up? It turns a deadly disease into a fun punchline.  "Save the Tatas!" Why are we focused on them? What about saving the women? And what about the men who are afflicted with this disease? Their breasts are not considered second base, nor called tatas or coconuts or hooters or any other cutesy tee-hee names.

The reason behind all of this is rape culture. It makes it okay to turn women into sexual objects, which in turn makes breast cancer a fun game all about the tatas. Rape culture makes it okay to sexualize breast cancer.

And that is why it is so marketable. Sex sells, remember? It's no longer about the women. It's all about the tits.

It's the reason an image of a sexy young woman with presumably perky, whole breasts wearing black sexy lingerie made the rounds on Facebook trying to co-opt National Metastatic Breast Cancer Awareness Day (October 13) as No Bra Day. What does going without a bra have to do with breast cancer? Many women who've had mastectomies (as well as those who've undergone reconstruction) can no longer wear bras, at least not "normal" ones. Who does going without bras serve? The patriarchy, objectifying women.

Heterosexual males benefit from it. Not the women with breast cancer. While whole and perky women are jiggling free under their shirts, women who have had mastectomies, with scarred, lumpy, or completely missing breasts, are reminded that society values their breasts more than the person. Many of these women already have self-image issues stemming from the procedures. It is not a "free boob job". A mastectomy and reconstruction involves several surgeries, drains, and a lot of pain as well as a risk for infections and complications. And the reconstructed breasts are still scarred, easily causing pain if bumped or prodded, with little or no sensation that pleasurable to the women. But society expects women to have two bouncy tits or they're not a "real woman". Fortunately, more and more are choosing not to reconstruct, instead going Breast Free.

What a radical thought. But it doesn't have to be that way. Society ties so much of our identity as women to our breasts that the concept of opting out of additional painful surgeries seems groundbreaking and radical and brave. The patriarchy expects women to look like women, even if the reconstructed breast lacks the ability to cause pleasure. It's not about the women. It's about the men.

Yes, I'm aware that some women choose reconstruction for their own personal satisfaction. Had I undergone a mastectomy, I probably would have chosen reconstruction myself. It's not about women choosing to reconstruct, it's about how they're expected to, and going flat is seen as daring and brave. It's not, they're making a choice that's right for them, just as those who choose to reconstruct are making the choice that's right for them as well. Society expects us to have two perky tits, and that pressures a lot of women into undergoing the pain and stress of reconstruction when they might otherwise choose to go without it.

It's an ugly post on an ugly topic. Women are expected to be bright and happy For the Cure robots of Hope and if there's anything we don't like about it, we're expected to shut up and be thankful anyway. Sound familiar? Lay back and take it. Close your eyes and think of England. Catcalls on the street? Stop being so sensitive, it's a compliment, learn to take it like one. All this attention should be accepted with a smile.

This hurts women, and it hurts men too. This is why male-oriented cancers don't get enough attention. This is why other cancers and diseases don't get the same amount of coverage as breast cancer. They're not perky, bouncy, fun sex objects. They can't be marketed in a lighthearted manner. Not the way we do with breast cancer.

That's the end result of it. Breast cancer has become a punchline, the deaths of 40,000 Americans annually pinkwashed over with marketing campaigns which do nothing but line pockets. It's a big business, and sex sells.

I'm not proposing we find ways to sexualize testicular or prostate cancer, but instead, how about we stop using it to sell breast cancer? It's not a cute disease of tee-hee body parts to be called by nudge-wink nicknames. It's killing people. Men and women alike. And we are no closer to a cure than we were decades ago.

Forget about the damn tatas. Save the people instead.

October 12: Don't Play Games With Me

I ranted about this last month, but here it is again. You know the games I'm talking about. The inboxer messages that implore you to forward them to all the women on your friendslist, post something obscure as their status, and somehow, all of that promotes Breast Cancer Awareness.

Breast cancer is not a rite of passage in the voyage of womanhood. It is not a status game to play. Posting obscure things or sentences of off-color humor do nothing to promote awareness of breast cancer in general, let alone metastatic breast cancer.

Taking selfies without make-up does not support people with breast cancer. Going braless is not a thing to do to show solidarity. There's been efforts to turn October 13 into braless day to show support for breast cancer.

News Flash. October 13 is already spoken for. It's the National Metastatic Breast Cancer Awareness Day. Yes, this is a real thing, that a group of women from the Metastatic Breast Cancer Network lobbied hard to get. The stage that accounts for 40,000 deaths in the USA each year gets one whole day, a sort of a backhanded acknowledgement, throughout the entire pink month.

And some people feel it's the perfect day to promote playing games.

Now, if you've played the games, don't feel guilty. What's done is done, and while you didn't spread awareness, you didn't actively harm anyone either. But the next time they come your way, don't participate. Instead, post a fact about Breast Cancer, like how 155,000 Americans are living with Metastatic Breast Cancer right now, or how only 2% of the funding raised for breast cancer goes to research for MBC.

But respect and honor our day. Forty percent of the people with breast cancer are metastatic.  Thirty were treated for earlier stage cancer, and ten percent were already metastatic at the time of diagnosis. We get 2% of the funding. We deserve more than just that, more than just that one day we have to honor the fallen. But it's what we have, allow us that much.

When the games come your way, take it as an opportunity to educate. Only then will they help spread awareness.

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 10: What Not to Say - Part 3

Welcome to day three of What Not to Say to a person with Metastatic Breast Cancer. As I've said, this is not to guilt anyone who's said these things with good intentions, but to educate. Even I was saying them to myself back when I still had the pink blinders on.

"Why can't they just do surgery?"

It seems to boggle people when they find out I've not had a mastectomy and am not planning to do so. Wouldn't cutting the cancer out get rid of the cancer? Not in the case of Stage IV. The cancer is already spreading through the circulatory and lymphatic systems, and just because it doesn't show up anywhere else only means that it's not big enough there yet to detect. Cutting out bits and parts of the body as the cancer rears its head wouldn't actually accomplish anything in curing the cancer or getting it under control, but instead put the body through unnecessary additional strain and raise the risks of infection or organ failure. There are studies that indicate removing the primary mass can actually help trigger the growth of additional metastasis, and overall does nothing to improve the chances of survival.


"How can it be breast cancer if it's in your liver/lungs/bone/brain/etc?"

This is what Stage IV is. The breast cancer cells break away from the main tumor and are dispersed through the body, looking for somewhere else to take root. The four most common sites for breast cancer metastasis are the brain, the bones, the lungs, and the liver. It is not limited to those four places, but those are by far the most common, and it's likewise not unusual to have metastasis in more than one location. Prognosis can depend on where the cancer takes root; bone metastasis is thought to be the easiest to bring to a stable state for a longer stretch of time, but it comes with it the side effect of weakened bones and an increased risk for fractures and joint replacement surgeries.

***
Part One
Part Two
Part Four

October 9: Things Not to Say - Part 2

Welcome to the second post out of four installments of things not to say to someone with metastatic disease. As I said yesterday, I understand many of these comments are spoken with only the best of intentions, and it's not my goal to shame anyone for saying them. I admitted to saying one of them myself yesterday. It's what's busted with all the pinkwashing.

"Have you tried this special food?"

 I'm not even a year away from my diagnosis, and I'm pretty sure I've already heard it all. Hemp oil cures cancer. Superfoods cure cancer. I just have to eat this or take those pills and I'll be okay. Seriously, I wish it were that easy. There is no particular food or natural ingredient or medication that will cure cancer. I have no doubt that eating thee foods help supplement and support the body during and after treatment and give us an extra boost of nourishment, but a cure? Far from it.


"You need to make your body hostile to cancer by following a special diet."

There's a current theory floating around that cancer thrives in an acidic (low pH) environment, and in order to beat cancer, you need an alkaline (high pH) environment. It's based on lab studies, and while they are not inaccurate, the findings only apply to cells in an isolated lab setting. Altering the body's cells to be less acidic is virtually impossible to accomplish. Furthermore, home-testing kits which measure the pH balance in urine output do not reliably relay information on the body's pH levels. Excess acid or base is excreted and the body maintains its pH balance. If there were actually a known diet that worked, there would be a paper or five published by the likes of MD Anderson or Sloan-Kettering. Finding a treatment like that would be quite the feather in any doctor's cap.


Sugar feeds cancer cells!

This theory took root because of the way PET scans work.  Positron emission tomography (PET) scans use a small amount of radioactive tracer, typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy, such as cancer cells, absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true. There's a reason you have to sit very still while the tracer disperses through your body. Any kind of activity will result in higher energy use. All cells use glucose, all cells need glucose. Cancer cells are typically dividing at a faster rate than most of the surrounding cells (which is why chemotherapy works) but cutting all forms of sugar out of your diet is not going to stop the cancer cells from growing and multiplying.

***
Part One
Part Three
Part Four

October 8: Things Not to Say - Part 1

Someone on a Metastatic Breast Cancer support group on Facebook created a game for Metsters. A Bingo card, with comments that often are spoken by well-meaning, if ignorant people. Over the next few days, I'm going to be tackling some of those comments, and I'm going to be blunt about it. But I also want to say that once upon a time, I thought this way too. This is the problem of pinkwashing, it creates a false reality around cancer and shields us from the harsh facts about Metastasis. So when we are confronted with it, all we have is a false reality to draw on for something to say. This isn't to shame, but rather to educate. I apologise in advance if some of my frustration becomes evident.


"You are so brave."

Uh, thanks, but not really. I'm facing this scary thing because I have no choice but to do so if I want to keep living. I'm not brave, I'm just trying to survive and live my life. I'm not in this situation because of any choice I made. I'm just doing what you're doing, trying to live. Telling Knots compared living with MBC to being on standby for a flight. While it's true we all have to go sometime, that's comparable to everyone having to board the plane sooner or later. The difference is, people with MBC are in the airport, with tickets in hand, on standby for when a seat opens up. We don't want to be called, we don't want that seat to open up, but we're ready for it. That's not bravery.


"You look great!"

Please. I'm in a wrinkled T-shirt and faded jeans, without a stitch of make-up on and I'm bald. I don't even have eyelashes and eyebrows. I look like hell, and I know it. Telling me I look great? I can hear the unspoken words. "For a cancer patient". After all, I'm up and around and going on with life, rather than wasting away hooked up to tubes and wires. I don't look great though. I look worn out and washed out and as tired as I feel. Instead of a false compliment when we're worn down to the bone by the cancer, why not simply tell us how good it is to see us? Isn't that what you really mean?


"Stay Strong!"

As opposed to what? Giving up? I guess there's some merit to that, but do you know how exhausting it is to stay strong all the time? We have to, though. This is why it's so important that people with metastatic disease have their own unique safe space with others facing the same problem in which they can vent. We can hardly tell our family and friends how tired we are of fighting this, how sick the side effects are making us feel, how scared we are. We have to stay strong and put on a brave face to keep the people around us from falling apart, or worse yet, walking away. Almost every day I see a post from a fellow metster whose spouse has left them, whose children won't talk to them, whose friends are becoming absent. Stage IV is a slow death, and if we're lucky, we get a long time where we're not actually dying. But the fear is still there. We are hushed at breast cancer support groups because hearing our stories scare the earlier-stage survivors. No one wants to talk about metastatic breast cancer. So of course we have to stay strong. Society doesn't give us a choice.


"You'll be fine."

I fully admit to being guilty of this one. I said it about myself. In fact, when I'd be telling people I had Stage IV Breast Cancer, that's what I'd tell them, "But don't worry, I'll be just fine." I was blinded by pink, and didn't fully grasp the scope and depth of my metastatic diagnosis. I'm doing fine, but I'm not fine. I have a terminal stage of cancer. It's currently stable, meaning it's not currently killing me, but that doesn't change the fact it's never going to go away. I will never be exactly "fine", because when we say "You'll be fine", we really mean "You'll be cured". And that's not going to be the case.

 ***
Part Two
Part Three
Part Four

October 6: Milestones

Mothers often think about seeing their child's "firsts" - First day of first grade, prom, graduation, wedding. For many, these are contemplated with the outlook that it's a given they'll be there.

Many young women with metastatic disease are mothers. For them, these milestones come with an extra prayer. They'd like to live long enough to see them. To see their young child start their first day of first grade, starting high school, going to a prom, off to college, getting married. For many of them, the reality is that they won't be able to live to see these things.

The ones they do experience, they're all the more precious for it.

What would it be like to have to live your life knowing that you probably won't survive long enough to see your little child start high school, let alone graduate or go to college? Knowing that this beast will rob you of these experiences, these milestones?

That's what it's like to live with Metastatic Breast Cancer. Even if you're stable now, each holiday, each birthday, it might be the last.

I recall one woman in a Facebook group for metastatic breast cancer. She went on a camping holiday with her husband and children to build memories for them over Mother's Day weekend, and during this time, she posts to the group with reports of feeling worse, with her eyes turning yellow. A week later, we learned that we lost her. That's how quickly things can change.

Each moment is precious, borrowed against the threat of the beast. We live knowing full well that we're dying.

It's not romantic. It's not Hollywood. It's not something beautiful and poignant and touching. It's rough and it's painful and it's unfair.

We are living on borrowed time, and there's too many milestones to live. Too many that are being robbed from us for lack of treatment. Effective treatment that can keep this beast at bay longer. Cancer is a living thing, it grows, and it adapts. Treatments which worked for years can suddenly become no longer effective, and there is progression. In the end, there is always progression. And there's not enough research for more treatments, more options when we run out of what's currently at hand. We turn to clinical trials and pray we don't get a placebo, pray that it works, in an effort to make it to the next milestone.

That's the reality of metastatic breast cancer.

October 4: Did You Know...

Did You Know...

...metastatic breast cancer is the leading killer of women aged 35 through 55? The recommended age for breast cancer screening is 40. This means that women are developing, being diagnosed with, and are dying from breast cancer long before the medical field says they need to be worrying about it.

They do recommend to start screening earlier if you're from a family with a high risk for breast cancer. But that's only a small percentage of them. What about the rest of us, who have no known history of breast cancer in the family? And yet we develop the disease before the age of 40?

I'd say that breast cancer screenings need to start earlier, except mammograms are not as accurate on younger women due to the density of the breast tissue. Not all forms of breast cancer result in a lump, and in younger women, oftentimes by the time the lump is able to be detected, it's already advanced.

We have a test for gene markers that can tell us if we're more or less likely to develop breast cancer. Angelina Jolie put this on the forefront of the news. The BRCA 1 and 2 gene mutation, if present, results in a far higher risk of developing breast and ovarian cancer.

There's a few problems with that, though. For one, the tests can be expensive, and if your insurance won't cover them, the price tag is high enough to keep most women from being able to afford them. There are different types of BRCA testing, ranging in cost from $475 to about $4,000. When you're already paying for cancer treatment and numerous doctor visits, it's hard to find that level of spare change.

Only 5% of breast cancers are due to the BRCA 1 or BRCA 2 gene mutation. That means 95% of the breast cancers out there were not caused by any known genetic factor. I will stress the word 'known'. There's a lot of research that still needs to be done to identify genetic factors for breast cancer, and to make these tests more accessible to the average woman.

My own test results came back negative. I have only one known relation with a history of breast cancer, my great-grandmother on my mother's father's side. I had no reason to start screening earlier, or to suspect that a lump, itchy and painful like a cyst I had before, was anything less than another cyst.

We don't know enough about breast cancer. We pour all these resources into early detection programs and mammogram screenings, and not enough into research for a cause, research for viable, working treatments that can lead to a Stage IV patient being declared No Evidence of Disease. Why are so many women get breast cancer at earlier ages without any warning? Why do we not know this yet? More funding needs to go to research, so more gene markers can be discovered.

With all the awareness, Breast Cancer is still the leading killer of women between the ages of thirty-five and fifty-five. That is unacceptable.

October 3: Too Young or Too Male?

This post doesn't explictly focus on metastatic disease, but instead highlights a disturbing reality of breast cancer. It's not just for women after menopause anymore.

With an increasing frequency, young women are being diagnosed with breast cancer. And in younger women, it's usually more aggressive, more likely to become advanced.

Girls who should be focused on prom and graduation from high school are getting diagnosed. Even tweens are getting diagnosed. While young women with breast cancer are still the minority compared to the older end of the spectrum, they exist. And it can occur at a shockingly young age.

Mammograms start at age 40 because they're not effective for screening for breast cancer in younger women. The breast tissue is too dense for a clear reading. By the time breast cancer is detected in young women (a lump for ductal carcinoma, a thickening of the tissue and/or lumps for lobular carcinoma, red irritated inflammation of the skin for inflammatory breast cancer) it is usually advanced. Lymph nodes swell and tests are run, and by that time it's already beginning to circulate through the body, increasing the risk of metastasis.

In my own case, I'd had cysts before which opened and drained on their own. When I felt the lump, it was painful and itchy at the time, and in the beginning, I couldn't always find it. It seemed to come and go around my menstrual cycle, and as I said, it hurt and itched. There were no other warning signs in the breast, no dimpling or changes besides the lump, and symptom-wise, it pointed to a cyst. I was under 40, and there was little concern even from medical professionals that it was anything more than a cyst. It was only when I finally went in to have it drained that a biopsy ended up being ordered and confirmed it was actually breast cancer. By that point, it was advanced and had spread to my liver.

If you have breast tissue, you can get breast cancer regardless of your age, or even your gender. Men are getting diagnosed with breast cancer too, and because it's so often promoted as a female disease, they don't realize it, and by the time they're diagnosed, they're often already at Stage III or IV.

The worst part is, because breast cancer is so often viewed as a woman's disease, men with breast cancer can face ridicule and mockery, shaming them into silence. Even if they suspect they have breast cancer, this shame can prevent them from seeking medical help until it's far too late. And there are not enough men who have been diagnosed in order for there to be a proper protocol for treating men.

Anyone remember the Secret antiperspirant commercials and their slogan? "Strong enough for a man, pH balanced for a woman"?  Men and women are different on so many levels, and the treatments for breast cancer that are effective on females don't always work as well on men. There is so little known that they lack decent treatment options.

The pink ribbon has done a great deal for spreading awareness, but unfortunately it has done so at the expense of far too many.

Men.

Children.

Metastatic disease.

The pink ribbon doesn't cover those, doesn't acknowledge it. We might make up a rarer percentage, but we are still a percentage that exists, and that needs to be known.

Blaming the victim

Right now, the media is abuzz with talk about all the celebrities who had their nude pictures hacked and posted on the internet. Well, they shouldn't have had them in the first place, people might argue. They shouldn't have put them in a secure storage system that wasn't hack-proof. It's their own fault.

Classic move of blaming the victim. Never mind that they thought that they were using a secure system. Never mind that blaming them for the hack is akin to blaming a homeowner for a burglary, even if they keep the curtains drawn, doors locked, and exterior lights on.

I'm not going to soapbox about rape culture (although it's tempting) but thinking about victim blaming makes me realize how pervasive it is, even with breast cancer.

You should have been avoiding X, Y, or Z. You should have been eating A, B, or C. You should have done this, you should have done that. Could'a, should'a, would'a.

It's still victim-blaming.

We didn't do anything to deserve getting breast cancer. Yes, we should all eat healthier, but that's not to blame for breast cancer. What we do or do not do is not the issue. We did not cause our disease.

Yes, I should have gone in when I found the lump. Even though when I tried to find it again later that night, I couldn't. Even though medical sites insist that breast cancer is rare under the age of 50. The more I read and the more I research, the more convinced I get that it was already too late.

The whole point of mammograms is to find breast cancer before they can be detected by touch. Usually when they get big enough to find by feel, they're already advanced. Maybe not yet stage IV, but invasive. Once it's invasive, there's always a risk of metastasis. And in younger women, it's frequently more aggressive.

When I had my mammogram, roughly two weeks after the biopsy results proved cancer, I was called back three different times for nine different scans on my right breast, and even then they needed to resort to an ultrasound to rule out any lumps. The tissue was too dense to get a good reading.

I have no known history of breast cancer in my family. There are times I wonder if some of them aren't worried about themselves, and in their own worry, harbor any unconscious resentment toward me for "introducing" breast cancer into the family line. I didn't do anything to cause my breast cancer. I'm not at fault. There is nothing I could have done to prevent it. And there is likely nothing I could have done to prevent it from metastasizing.

If you're reading this and you have breast cancer, take heed: It is not your fault. You did not cause this. You are not at fault for this disease. There is nothing you could have done to prevent it, so don't waste your energy looking behind you with all the might-have-beens. Look ahead, and keep your head held high. You are not to blame.

October Is Not A Time For Games

I like it on the table. I like it on the couch. I'm going to Germany for five months. Mine is blue! Mine is white! Mine has the pink ribbons! Blueberry! Pineapple! Avocado! Shh! Don't tell the men, it's just for the ladies! Post this as your status and show your support for breast cancer! Where do you keep your purse? What month is your birthday? What color is your bra? What's your relationship status?

Why do we even need a bra, ladies? Go without for a day to show support for breast cancer!

It's that time of the year again when stupid games dominate the Facebook landscape. They make no sense, and have no connection to breast cancer, they do nothing to actually raise awareness, let alone the far-more-needed funding. They exclude men, who can and do die from breast cancer.

The worst part is that some of these games are co-opting October 13 for their participation day. October 13 is the National Metastatic Breast Cancer Awareness Day, and these games aren't even relevant to any stage of breast cancer. How does going without a bra support the thousands of women who struggle with chemo and radiation and surgery and chemical menopause and metastasis? It doesn't.

It's Slactivism at its finest. Posting a random fruit as your status doesn't spread breast cancer awareness. Excluding men as part of your little inboxer games doesn't spread breast cancer awareness. Playing a game in secrecy certainly doesn't spread any sort of awareness. And it does nothing to help.

We have enough awareness of breast cancer itself. What we don't have is awareness of Metastatic Breast Cancer and what it really is. There's no cure. Breast cancer is not the "easy cancer". There is no cure. Thirty percent of women who detect theirs in an early stage go on to develop metastatic disease. An additional ten percent are metastatic from the time they're diagnosed.

When I was diagnosed, I thought it just meant I had to fight harder. It's just breast cancer, after all. Isn't that what we learn in October? Hope and a Cure? It's all about fighting, being a survivor, it's a beatable disease. I've had MBC for less than a year and I've lost count of how many women in groups I participate in have died from breast cancer. Not from treatment, not from something else, but from breast cancer that has metastasized beyond the breast. It goes to the bones. It goes to the brain. It goes to the lungs and liver, and those are just the most common four places.

One woman I knew, she welcomed me to a board when I'd joined, she was beautiful, inside and out. She was only thirty years old. She died several months ago from breast cancer. It's not a game. It's not a fruit. It's not a tee-hee status to keep the men guessing.  It's a beast, a monster, and it's very, very real.

We get less than five percent of the funding for research for metastatic breast cancer. The rest goes to early awareness programs, and of course, the ever-important CEO bankrolls. There's no profit in the dying, even though the entire sea of pink is built on the backs of the dead. There's no hope in metastatic breast cancer, and it's not profitable. There's no cure, but that's the secret they can't afford to let out. There's no cure for the early stage breast cancers either. Thirty percent go on to develop metastasis, no matter what.

They can't afford to let that become known. They're all about Hope and Cure, and where would they be if people found out that neither existed? That no one ever talks about the 40,000 deaths each year in the United States due to metastatic breast cancer, that it includes both men and women, and women under 40? What would people do if they knew that the death rate hasn't changed a bit, even with all the years of early detection programs? Nothing has really changed. Breast Cancer is still the killer it has always been, and all we can do is delay it for a while. There's no hope, and no cure. Not without funding for research. There's research out there that shows brilliant promise, but we need funding.

Metavivor.org and MBCN.org are two organizations that funnel donations to research specifically for metastatic breast cancer. 

The lives of women and men with breast cancer are not something for you to play a game with, we are not cutesy or naughty Facebook statuses, and we will not let you co-opt the one day of the entire pink month of October we have worked so very hard to get.

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.