Friday, March 30, 2012

PREVIVOR METAVIVOR SURVIVOR F*&%VIVOR

I am ending out the week with an adjusted version of something that I wrote in October.  It's part of my promise to be A Fearless Friend.  It's part of my commitment to make sure 40,000 lives are not buried beneath the pink ribbon.  It is the part of Pink Ribbons Inc that continues to creep into my thoughts at random times during the day.  It's because the three people whose lives I cherished most back in October when I picked up the cause have now died from breast cancer.  All three of them.  Within days, within hours of one another.

After the screening of the movie, there were girls who had questions about metastatic disease that I don't feel were properly addressed.  I will find out who they were.  One of them wore an MBCN T-shirt.  I will answer their questions.
Respectfully.  Properly.  Those of us who remain on the other side of that stage 4 line of demarcation owe it to those whose disease has crossed that line to BE their Fearless Friends.  To not be dismissive.  To listen.  This is how I felt on October 14th:

I take too much for granted.  Because I am an over informed font of (mostly) useless information, sometimes I am stunned.  Do you know that there is only one single day during the entire month of October, BREAST CANCER AWARENESS MONTH that is devoted strictly to raising awareness of Metastatic Breast Cancer? This was news to me.  Metastatic disease should be on the front burner.  Every day.  In every month.  Not a minute goes by, not ONE SINGLE MINUTE, that isn't tainted by a breast cancer death.  And this is worthy of one day shoved in the midst of Pink Madness?  I think not.

A show of hands?  We are all aware that cancer can spread outside of the area where it began?  Are we aware that a breast cancer patient whose disease has traveled outside the breast is still a BREAST CANCER patient?  If the cancer decides, for example, to attack the brain, it's NOT brain cancer.  It's breast cancer that has spread to the brain.  Likewise, if a patient with lung cancer has a similar spread to the brain, it's NOT brain cancer.  It's LUNG cancer that spread to the brain. 

Why is this important?  Quite simply, when cancer spreads, I generally hear things like, "First it was breast cancer, now she has lung cancer and bone cancer."  There was a tweet chat the other night and the topic was metastatic disease.  In the old days, we would simply say, "It spread."  Maybe we need to just get off the big words and go back to basics.  

While the pink banners are flying and the balloon arches are floating and the ribbons are pinned everywhere, MBC is pink, too.  It's the pink that is on the bottom of the pile.  It's buried.  These aren't the feel good stories.  These are the patients living in pain.  In fear.  And contrary to what some (ok ONE) have said, "THERE IS TOO MUCH PINK."

I'm sorry.  I don't like pink ribbons and I don't like Bald Barbies either.  Truthfully, I don't like Barbie at ALL as a representation of anything female.  How was a group of people able to get Mattel to produce this damn Bald Barbie and why can't we perform a similar uproar to get some corporation to symbolically burn the damn ribbon?  I'll tell you why. Breast cancer patients are expected to be the faces of hope.  The success stories.  Once the line is crossed, you are rapidly kicked out of The Club.    

And then, only in very hushed tones will most whisper to only their closest friends,
"I have never been so afraid of anything in my entire life. I don't want to die."**
These are words that were recently repeated to me because some (many?) MBC patients prefer to close out most of the outside world.

And, these are the words that were spoken by a few during that online chat on Monday night:

MBC is not a "type" of breast cancer. Coworker said "I never heard of MBC is it a rare disease?" It is incureable. Treatment is 4ever 

treatment is for the rest of our lives. I find it relentless and grueling. Many people ask me when treatment will be over?

One third of all breast cancer patients will become metastatic. Ignore us at your peril.****

I also want people to know that very little money is directed towards mets research and this has to change.

I've had people say when I say I've got metastatic breast cancer 'what does metastatic mean?' jaws drop when I explain

we learned this spring that only 3% of breast cancer research funds are for metastatic cancer research

... ultimately, people don't die of a tumor in a breast. We die after the cancer has spread,become metastatic - or from treatment.

It would really help if "The Media" would do justice to MBC. The stories need to be told well-not sappy or pinky...

Media likes stories w happy endings or that have possibilities. Possibs 4 mets = rare 


My energy, particularly after seeing Pink Ribbons Inc, is for my friend whose mets progressed at warp speed. She got the all clear.  The Stage 1, All Clear.  And a year later, It Spread.  After three months on meds to attempt to address what was happening in the bones, a rescan of the bones showed no change. Further testing showed mets in the lungs, liver and brain. In THREE months time, while on chemotherapy.  Every likely organ that breast cancer likes to go, it went.  Her words were those ** expressing her fear of dying.  Three months later, her fear was my heartbreak.  She was the first of the three who died.

The remark **** about ignoring at our peril?  Those words belong to Susan Niebur.  She was the last of the three who died.  She spoke the truth to the world using a graciousness I can only hope to achieve before I leave this planet.  

Surely one of those other lines is the somewhat toned down snark of Rachel Cheetham Moro.  She also died.  Rachel, who helped design The Toolkit for Breast Cancer Action.  Rachel, who would have been cheering and jeering if she were in that theater where she should have been.  Rachel, who should be here trading barbs with the twitter person who is SusanKomenGhost.

Billions of dollars and decades of research and we are no closer today than we were 25 years ago.  Unacceptable.  Those young women in the audience deserved a better answer.  They deserved to hear, "We are not going to tolerate the lack of funding for metastatic research.  We will fight KFC Pink Buckets.  We will fight perfumes containing carcinogens and most of all, we will fight for research funding that will help YOU."

On a related note:  METAvivor is presently moving into fourth place in the Pinkwell competition.  Are you voting?  Every day?  Up to three times-Twitter, Facebook and Email.  We have enough time to make it happen.  But we have to ACT.        

12 comments:

  1. I am sorry to be so uninformed, but I thought if the lab results from the sentinel node biopsy were clear then my wife was cancer free? Are you saying that's not the case. Thank you for your help your writing is to me.

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  2. I'm driving right now. Clean nodes is great news. Pls email me. Info from the doctors is best. The team knows best and every cancer is different. I will be happy to help you prepare a list of questions to discuss with the doctors to put your mind at ease. You are not misinformed. Breast cancer is more than one disease which is why it's important to ask the right questions.

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  3. Yes, Idelle. Agreed, wow. Something has to change.

    I'm sorry for the quick response to the first comment. I was in my car, typing from my phone (at every red light). I knew I wouldn't be home for hours. Now for a well thought out response for anonymous...... my email address is in the "contact me" box at the top of the page. anncicc @ gmail . com (no spaces).

    You are obviously a concerned husband trying to understand as much as you can. In my book, you are GREAT. Specific medical questions and treatment plans and biopsy results are best discussed with your wife's doctors. There are a number of "types" of breast cancer. It's not just one disease. Based upon your wife's specific diagnosis and treatment, the doctors can tell you the chance of recurrence. Yes, your wife is cancer free and with clear sentinel nodes, it sounds like she is in excellent shape.

    I just have a "thing" when certain words are used interchangeably. Cancer Free doesn't mean Cured. The longer she remains cancer free, the less likelihood of a recurrence. Her risk of recurrence can only be determined by the doctors. My own risk for recurrence based upon my circumstances is less than 10%. It could be less than 1%. I don't know the exact number. For me, that number doesn't matter. I know I did everything I could to treat the disease and I follow the guidelines to the best of my ability to keep the risk as low as possible. But there is no way to prevent breast cancer and there is no cure for breast cancer either.

    The three women I refer to in this post each had a different type of cancer. It certainly was not my intent to cause fear or confusion. Again, if you want to talk about questions you might ask specifically about your wife, please do email.

    Best to you and your wife,
    AnneMarie

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  4. AnneMarie - thank you for this article. It is greatly appreciated.

    I have metastatic breast cancer (MBC) and am President of METAvivor. I do not like to cause fear, but the only way we can bring about change is to be honest. And in all honesty, risk factors don't mean very much.

    In a recent survey, 19% of the MBC respondents had initially been diagnosed at stage 0 or stage I and had then metastasized. Early detection is no guarantee. In fact, people have metastasized from breast cancer cells that never even formed a tumor in the breast, but did form breast cancer tumors elsewhere in the body. And the vast majority of breast cancer patients have no family history. I want to leave everyone with two thoughts.

    FIRST: Thirty percent of breast cancer patients metastasize sooner or later. However, because everyone says it is so rare ... or can be avoided ... or that THEY are safe ... AND because the 30% figure is not well known ... these newly diagnosed MBC patients have a horrible burden. They must not only face the devastation of a terminal illness ... they believe they must have caused it ! They did not.

    SECOND: NOW is the time to fund research. Once you are diagnosed, the median survival is only 2-3 years. And the lifetime survival is close to ZERO. Research takes a very long time. People need to prepare NOW by helping transition MBC to a permanently survivable condition. Then, when they DO metastasize, their cancer can be controlled and they can live long, productive, enjoyable lives.

    CJ

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    1. CJ-

      Thank you for taking the time to share your thoughts here. It bothers me that NO ONE ever wants to discuss mets patients and yet, everyone is doing something in "memory of _____ who died" ..... WHY are we waiting? I don't want to memorialize ANYONE, I want to fight for them NOW.

      I agree with you.... research needs to save those whose disease has metastasized. Then, figure out how to prevent mets after initial diagnosis and ultimately, prevent the whole thing in the first place.

      It's heart wrenching to think about those who are dx'd with mets and then blame themselves as if they somehow could have stopped it.

      So much misinformation out there and that boggles my mind. AFTER all of this time???

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  5. Great post, AM. And great suggestion about voting for METAvivor with all your different social media accounts & emails. Hi, CJ!! xoxo

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    1. Definitely, Kathi. It takes all of one minute, to switch accounts and get three votes in each day! Not a big deal for us, but I'm sure CJ could do lots with the prize money.
      xoxo

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  6. May METAvivor win! I appreciate your bringing metastasis to the forefronts of our minds. We must never forget the Rachels of the world. XX

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    1. You bet, Jan. We need to keep this in the front of our minds.
      xoxoxo

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  7. This is a fantastic post. The ONLY people who die of breast cancer are those of us with metastatic breast cancer. And, no money flows to us.

    To anonymous - breast cancer is a tricky disease. I had clean nodes too. I did six rounds of chemo, and a year of herceptin. I finished my treatment and went on to live my life, vowing to never look back. Five months later, I discovered breast cancer was in my liver. You just never know. You can't live in fear but you have to be aware.

    I am on my fifth chemo now. I've had half my liver surgically removed. I'll be on chemo for the rest of my life. I am now going bald for the 2nd time. I am not pretty, I don't look good in pink and I am nobody's face of hope. That's why I'm ignored - why we all with MBC are ignored.

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    1. Ann,

      You are beautiful FOR STARTERS..... and yes, being ignored is a fact of life for MBC patients and it's horrible. This doesn't work for me. Too many of you mean so much to me and I know that my "Survivor Badge" can be stripped away in an instant. And, for what it's worth, there is so much wrong with the vocabulary of cancer, too. Words mislead. Awareness is key.

      I'm with you for the long haul, but I think, I HOPE, you already knew that...

      xoxox

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