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 22: Interview with METAvivor's Lori Marx-Rubiner

I interviewed METAvivor president Lori Marx-Rubiner via email. These are her replies.

When were you first diagnosed with Breast Cancer?

Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.

When were you diagnosed with Metastatic Breast Cancer?

Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.

What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.

How did you first learn about METAvivor?

NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.

When did you get involved working with METAvivor?

CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.

How much progress do you think has been made for metastatic breast cancer research?

One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

That you die from it.

I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.

What was the hardest treatment you've been through to date? The easiest?

Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)

Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!

Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.



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Thank you, Lori, so very much for taking the time to answer these questions.

Lori can be found at her blog, Regrounding, and on Twitter.

Watch her interview on Lifetime's The Balancing Act.

October 21: Interview with METAvivor's Kelly Boyd Lange

I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.

When were you first diagnosed with Breast Cancer?

I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).

When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Starting Herceptin, 2007

My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those  axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.

Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.

How did you first learn about METAvivor?

METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!

When did you get involved working with METAvivor?

I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.

How much progress do you think has been made for metastatic breast cancer research?

Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

After 2 Herceptin treatments

It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.

What was the hardest treatment you've been through to date? The easiest?

The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!



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Thank you so much, Kelly, for taking the time for this interview.

Kelly can be found on Twitter, along with METAvivor. 

Watch her interview on Lifetime's The Balancing Act.

October 16: Ways To Help

So your friend or loved one has been diagnosed with Metastatic Breast Cancer. What can you do to help?

1) Don't tell them to be brave. Chances are, they're putting on a braver face than you can imagine because they don't want to worry you. Actually, go read (or re-read) the four-part entry on what not to say (Oct 8-11, 2014)

2) Ask what you can do to help... and follow through. If they answer and it's in your abilities, you made the offer. Nothing stinks more than being offered help, and having that help disappear when specifics come up.

3) Offer to do housework. Especially if they're undergoing radiation or chemotherapy, they might want to be able to clean the kitchen or do laundry, but lack the energy.

4) Make up casseroles that freeze and reheat well. First, be sure to account for their personal tastes and any weird taste glitches that treatment has brought up. For the last few rounds of my chemotherapy, I could not stand the taste of meat, especially chicken and seafood.

5) Find out if there's any supply they're going through quickly, and pick up some extra and surprises them. I went through boxes of tissue rapidly while on chemo due to increased sinus drainage and nosebleeds. I also started going through bottles of RealLemon juice, added to my water, since I could no longer stand the taste of plain water. I also snacked on dried, sweetened ginger candy to keep the nausea at bay.

6) Offer to drive them to and from chemotherapy and radiation appointments. If they need a ride or have been driving themselves, offer to help share the burden so they can rest on the way home. Plus, the company during infusion can be nice to have.

7) If they have a caretaker, ask the caretaker what you can do to help them. Sometimes the best way to help a cancer patient is to help the people already helping them.

8) Let them talk to you about what they're feeling. If they're having a bad day, let them vent without panicking that they're giving up. Avoid giving them empty platitudes, just give them an ear to listen and a shoulder to cry on.

9) Spend time with them. If they're currently in active treatment, they might not be up for going out and doing very much. Coming over and watching a movie with them and just spending time with them can be priceless, especially with how little time we might have left.

10) Offer to accompany them to doctor appointments and take notes. It's hard to listen and remember everything that's said, especially with chemobrain being a thing. It's difficult to pay attention and take notes while interacting with the doctor, and having an impartial pair of ears listening can be a real boon.

For even more ideas, check out 44 Ways to Make the Day of Someone With Cancer by Elana Miller MD.

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 13: Metastasis is an Ugly Word

It's October 13th. Today is National Metastatic Breast Cancer Awareness Day. We get one whole day out of the entire pink month of October. One day. And that's a day people try to co-opt for bogus Facebook games that do nothing to spread awareness or raise funding for metastatic disease.

Today is the entire sum of this month's worth of blog entries, so instead of soapboxing on any issues I've covered, or will be covering in the coming days, I'm doing something special.

I'm sharing an excerpt from my memoir, Metastasis is an Ugly Word, when I first learn that the so-called cyst I thought I had was actually cancer, back in the days when I was still blinded by the pinkwashing of the disease.

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When I went to the Family Health Services clinic to have the cyst drained, the doctor examined it, and refused to proceed. She said it felt too solid, and if it was a cyst, it would be a more involved task to drain it than she was equipped to handle. She gave me a referral to a surgeon, which terrified me.

Not because I was worried that it might be cancer, but because I was worried about how I was going to afford that. I was thirty-nine years old, still more than six months away from qualifying for Every Woman Matters. Then she told me that wasn't true. I had an actual lump, it didn't matter how old I was. I qualified for that reason.

I was flabbergasted. I told her I'd never heard that, I'd looked into the program before, that I'd never received the impression it was accessible to me before the age of forty, lump or no lump.

"I know," she told me.

That made me angry. But what was done was done. I was there, and I would be able to see a surgeon to get a biopsy, and I would be covered under the program. No use in looking back and being angry about what might have been. Just another appointment to work into my mostly-free schedule.

I just let Karen, my Human Resources contact at work, know I'd not be coming in that day, as I was still on light duty per worker's comp because of my wrist. Most of my time at work was spent doing nothing but sitting with a certain resident who needed a one-on-one caretaker pretty much around the clock. Although I wasn't medically cleared to physically assist him if he needed to go to the bathroom, I could free up the other CNAs to work the floor and stay with him and make certain he didn't try to stand on his own.

By now, it was November 12th, and once more I'd waded through a world where everything was flooded with pink ribbons everywhere. If you didn't have Awareness about the Pink And Beatable Disease Of Women, you lived under a rock in the middle of nowhere. But I was still too young to worry about breast cancer. Besides, there was no history of it in my family to my knowledge at the time. GI tract cancers were a different story, but I had no symptoms for one of those either, and aside from an injured wrist, I was strong and healthy.

The day for my appointment came, and I went to the surgeon's office at Bryan West Hospital. When she did the biopsy, the tissue proved to be solid, not a cyst. Either the surgeon was a remarkably good actress, or she too wasn't terribly concerned about the possibility of cancer. After all, eighty percent of breast lumps are benign, especially for women in their thirties into their forties. Still, the biopsy sample was on its way to pathology, and the office would contact us once they had the results.

A week went by, and every day while sitting with the resident at work, I would pull out my phone and check the patient portal website I was given at the surgeon's office and look for results. The more I checked the site, and the longer it went by without an answer, the more anxiety I felt. It chewed on me enough that several coworkers and residents noticed my increasing agitation, and asked me what was wrong. To the residents, I simply said I was just thinking about something at home, and to my coworkers, I admitted the truth. I had a biopsy on a breast lump.

Saying it made it real, saying it brought in dark and scary feelings of panic. What if was cancer? What would I do? How could I afford it? It couldn't be cancer, we couldn't afford it, I'd die from not being able to afford the treatments, didn't that happen all the time? Why wouldn't they just post the result, why was it taking so long? I was going to load the page, and any minute now, it was going to tell me what the results were, and they would be benign and I'd laugh at myself for being so paranoid. Just another possible serious medical issue that turns out to be nothing at all.

I was already on Ativan for occasional anxiety attacks, and I took more of it now. I couldn't sleep. I was a bundle of nerves inside and working overtime to keep the nerves concealed. At night, I distracted myself with reading Watership Down for the umpteenth time, while in the back of my mind wondering if this might be the last time I'd ever get to read the book. No, that was silly. It wasn't cancer.  It was going to be fine.

I was sure there would be results posted on Friday, but there was nothing. The weekend rolled by in silence, and I was even more certain there would be something on Monday. Again, nothing. On Tuesday, a full week after the appointment, Jen called the office. My stomach twisted into horrible knots while I tried to make out what was going on just from her end of the conversation.

I couldn't stand it any longer.

"Is it cancer?" I whispered, twisting my fingers around each other.

She nodded.

My world dropped out underneath me and a cold wave of terror flushed every nerve. I started to panic and she shushed me, still trying to listen to what the doctor was saying on the other end.

November 19, 2013, I entered the New Normal.

The New Normal was a world that had cancer.

It's Cancer. Cancer. Cancer.

I was sure it was some horrible dream. I was in full-blown panic, our roommate came to see what was wrong. I was hysterical. The tests had to be wrong. No, it wasn't cancer. It was supposed to be something easily removed. It wasn't cancer. I couldn't have cancer. Cancer meant I was dying, no no no no this wasn't happening!

It wasn't that I didn't think breast cancer was easily treatable, that there wasn't a cure. As far as I knew, that was the case. But the money! Where would we get the money for the treatment that would save me? That is why I panicked. How were we going to afford this? I was going to die from a treatable disease, just like so many other Americans who couldn't afford health care. What were we going to do?

The surgeon said it was Invasive Ductal Carcinoma. It was the most common kind of breast cancer, easily treated. Easily treated. I'd be fine. Jen talked me down out of the panic attack, I was going to see an oncologist at the Southeast Nebraska Cancer Center on the 22nd, it was all still covered under Every Woman Matters, it was going to be fine.

I remembered the insurance I purchased in July of that year, and the cancer coverage, thinking of my resident who'd passed from colon cancer, thinking of my grandmother who passed from pancreatic cancer, not thinking at all of a cancer that no one in my family I was directly related to by blood had experienced. Or at least, that is what I knew at this point. I'd either never known or I had forgotten that my great-grandmother on my mother's father's side had breast cancer when she was younger.

I got on the computer and went to Facebook, looking to see if Angela, a friend of mine who does the schedules at work was online. She was. I asked if she was at the facility and when I got a confirmation that she was, I asked her to stay there. I needed to come in and it was big.

I grabbed the paperwork, planning to talk to HR about what I needed to do to get that insurance, and went to work. I didn't think about cancer, I focused on driving that mile and ran inside.

I told Angela, and the first thing she did was hug me, then grab my wrist and drag me to the office next to hers, the HR office. That's when I found out Karen herself was seven years out from a breast cancer diagnosis. I was with people who understood the panic I was desperately fighting and the relief of being understood, of being with people who had dealt with it and were okay, I broke down crying as the worst of the fear died down.

Karen said she'd come with me to the oncology appointment on Friday. Angela made certain I understood that I was not to worry about money. Declare bankruptcy if needs be, but the important thing was to focus on fighting. Not on worrying about what it was going to cost. Money wouldn't replace my life.

I had an appointment upcoming the following week to do surgery on my wrist, since it was healing too slowly for our liking. I was still on light duty, and the next few days of work were spent mostly getting told I was going to be fine, and talking with the former director of nursing, who had stage IV breast cancer. It was going to be fine.

I was going to be fine.

I could beat this thing. It was curable. It was just a bump in the road, I'd be fine, this would be cured, I would be cancer-free and back on track with the job I loved.

It was still terrifying though. But I knew that my outlook had some input on my chances for survival, regardless of the disease. People who give up in defeat do worse overall than those who keep a positive nature. I worked with that every day, I saw it in action, I knew this. So I knew I couldn't let fear and anxiety win.

I behaved in the manner I wanted to feel. I projected the kind of positive outlook I wanted to have. I acted far more confident than I felt, and I refused to allow the fear a foothold. Every time I started to panic, I would stop and recite the Litany Against Fear from Frank Herbert's Dune until I calmed down. As time went by, I found myself having to recite it less frequently.

"Make believe you're brave, and the trick will take you far." That line from the Rodgers and Hammerstein musical The King and I was true.

I could do this thing.

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 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.

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Part Two
Part Three
Part Four

October 5: What Is Breast Cancer?

Breast Cancer is a huge umbrella that covers so many different types and variations, all of which can impact treatment and prognosis.

Ductal Carcinoma accounts for 80% of the breast cancers out there. It can be Invasive, or "in situ", when it hasn't left its area or origin to invade the surrounding tissue. This is the type that forms the classic lump, although depending on the density of the breast tissue, it's not always easy to find.

Inflammatory Breast Cancer

Lobular Carcinoma is the second most common type of breast cancer. Like Ductal, it can be either invasive or in situ. It does not always form a firm lump, and it can be elusive in mammogram screenings.

Inflammatory Breast Cancer does not form a lump at all, but has thickening and painful redness of the breast tissue. It can frequently be misdiagnosed as mastitis. It is usually advanced to stage III or IV by the time it's properly diagnosed. It is one of the more aggressive forms of breast cancer.

Paget's Disease of the Nipple is a rare form of breast cancer, accounting for just 1% of all breast cancer cases. It begins in the ducts and spreads to the skin of the nipple and areola. It presents with symptoms which can include crusted, scaly, red, or oozing skin of the affected area, as well burning or itching. 

This is just a short list, there's several more forms of breast cancer out there, although they are rare, accounting for 1-2% of the diagnosed cases.

On top of the different types of breast cancer, they can have different characterizations as well. They can be hormone receptor positive, growth factor receptor positive, hormone receptor negative, and so forth. A woman can be Triple Positive (ER/PR+ Her2+), Triple Negative (ER/PR- Her2-) or a mixture (ER/PR+ Her2-) These impact the various treatments available and how effective they might be. Triple Negative is one of the harder forms of breast cancer to treat because it has the least amount of available treatments which are successful.

There's also staging, which is another variable to account for in each unique case of breast cancer. Factors which impact on the staging include: the size of the tumor within the breast, the number of lymph nodes affected, and signs indicating whether or not the breast cancer cancer has invaded other organs within the body.

Stage 0 - There's slight differences between DCIS and LCIS in this stage. Ductal carcinoma in situ (DCIS) is a non-invasive cancer where abnormal cells have been found in the lining of the breast milk duct. In Stage 0 breast cancer, the atypical cells have not spread outside of the ducts or lobules into the surrounding breast tissue.  Lobular carcinoma in situ (LCIS) at Stage 0 generally is not considered cancer. Although it has carcinoma in the name, it really describes a growth of abnormal but non-invasive cells forming in the lobules.

Stage 1 - In this stage, cancer is evident, but it is contained to only the area where the first abnormal cells began to develop. The breast cancer has been detected in the early stages and can be very effectively treated. It is divided up into Stage 1A and Stage 1B. With 1B, there is cancer evidence in the lymph nodes.

Stage 2 - Like Stage 1, it's divided up between 2A and 2B. With 2A, no actual tumor is associated with the cancerous cells, or the tumor is less than 2 centimeters and less than four auxillary lymph nodes have cancer cells present, or the tumor is between 2 and 5 centimeters and has not yet spread to the lymph nodes. With 2B, the tumor is between the 2 and 5 centimeters and has spread to less than four axillary lymph nodes, or the tumor is larger than five centimeters, but has not spread to any axillary lymph nodes.

Stage 3 - The cancer has spread beyond the point of origin and into surrounding tissue and lymph nodes, but has not yet appeared anywhere else in the body. Sometimes the term 'advanced breast cancer' is used to include Stage 3. It is divided into three groups: Stage 3A, 3B, and 3C. The difference is determined by the size of the tumor and whether cancer has spread to the lymph nodes and surrounding tissue.

Stage 4 - This means that the breast cancer cells have spread to other areas of the body, such as the brain, bones, lung and liver. It is at this point considered incurable, and the goal of treatment is to extend life as long as possible. You can have Stage 4 Breast Cancer and not be actively dying, living with it more like a chronic condition, although it's considered a terminal progression.

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.

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.

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.

We need to make some noise

Early-stage breast cancer and metastatic breast cancer are two different beasts. Treatment and information between the two can vary greatly. The American Cancer Society has a pamphlet for breast cancer, just one. And it only relates to early-stage.

When I was in for my mammogram - my first one, after I already had BC under the age of 40 - there was only information about early stage, early detection. It's hard to find anything about metastatic breast cancer anywhere unless the site is about metastatic breast cancer to start.

When general cancer sites do have something that mentions metastatic breast cancer, it's usually very bare-bones. Not a whole lot of detail, compared to early stage.

Metastatic breast cancer gets ignored in research and funding, and that's the stage that kills people.

40% of people with breast cancer are metastatic. That number is too damn high.

10% of them were metastatic from the time of diagnosis, like me.

30% of them were treated for early stage breast cancer, usually quite aggressively to boot. Mastectomy,  radiation, chemotherapy, hormone drugs. And they still develop metastasis.

Hiding from the metastatic beast won't make it go away. Pretending it's not an issue won't keep people safe. We need to make noise, like the people with AIDS back in the '80s who were fighting to get research for treatment and maybe a cure. I don't know how to do that, though. If I did, I'd be doing it.

All I know how to do is write. So I have this blog, and I'm working on a book, a memoir, to try to get the word out. If anyone has any more ideas, please feel free to share them.

We've got to be the squeaky wheel if we want the grease.

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.