Sunday, October 13, 2013

Pinktober from a Metastatic Point of View

Today is October 13th, which, as you know, is officially National Breast Cancer Metastatic Awareness Day. What do we Metsters (people with metastatic breast cancer) want you Healthsters (people without metastatic breast cancer) to know about our disease?

First, know that it really is an official day!  There is a formal Senate Resolution declaring it as such, full of "whereas and resolved" and all that legalistic jazz (which would be a great name for a band, by the way).

Where did this resolution come from and who decided on the date?  Why did they choose October 13th, which seems so random,  rather than, say,  October 27th,  which happens to be the birthday of one of my kids?  Actually, I guess I'm glad it's not the 27th as I'd hate to have to choose which day to celebrate.

"I'm sorry honey, but we are going to have to put your birthday off this year - it's NBCMAD, and I have plans to par-TAY.   Dad and I are going to the club to listen to Legalistic Jazz."

I don't know the answer to how this day came into being or why women with early stage cancer get a whole month and a special color and everything, and we, the Chosen Ones,  only get one day.  I do kind of get why the month of October was selected, with the scent of awareness in the air, but it seems kind of forced, don't you think?  I mean, October has been the pink month for decades and October 13th has been Metastatic Awareness Day since only 2009 (the year I was diagnosed with cancer, now that I think about it). Quite the discrepancy.

I'm sure, before Congress was brought in to do the very important work of making this day official, the conversation went something like this,

"Hey, what do you think of including the people who are actually going to die of breast cancer in our Pinktober celebration?"

 "Won't that be too depressing?  Dying chicks don't sell a lot of product."

 "Well, they aren't around for that long."

"How about if we just give them one day?"

Personally,  I would have selected a better month, like April, which is full of hope and promise rather than October, which is full of death and decay.  And October the 13th?  Why?   Did a Friday the 13th roll around, and somebody across the street from the Komen offices (because we know the actual Komen people don't care about metsters) decide to get ready for Halloween and while they were searching eBay for the perfect costume  - one with amputated body parts and glowing bones - suddenly make the death/cancer connection and think, hey! It's Friday the 13th!  This would be the perfect date to let people know about Advanced Breast Cancer?

One wonders why they didn't just choose Halloween, with its built-in focus on death.  I mean, really, is there a better day out there to represent us metsters?  None of us get out of this metastatic cancer thing alive, and honestly, if you saw my mid-section, you would know I need no costume, with the winding scars from numerous surgeries, the puckering muscles, the weird reconstruction, bones sticking out everywhere, topped with grey, scarecrow hair.  I'm the perfect representative for a Halloween Metastatic Awareness Day.

But then, I guess if it fell on an already established holiday, we metsters would not get our rightful attention.

Which, as it happens, we don't, anywhere in the world of breast cancer, from support groups to charitable endeavors.

And, I guess, this begins what we want you to know about Metastatic Cancer:

We are the Ugly Stepchildren of Cancer
While early stage girls are dressing in pink outfits, putting their hair up and going to parties where they get crowned "Survivors," those of us with metastatic disease (aka the Losers)  are left inside, sweeping the stone floors while gulping our Dilaudid, knowing the only Prince who will rescue us is the Prince of Darkness.

We have such different concerns than the early-stagers that it might as well be another disease. Early stage women are nervous about: mastectomies, how their reconstructions will look, missing work, what chemo/radiation will be like, and the biggie, will cancer come back  - all of that is valid, and I was nervous about it all too -  but it has zero to do with those of us who have had a metastatic relapse.

We are, frankly,  beyond those concerns.  What your breasts look like when you are hoping to live to see your child's next birthday - not on the radar.  When you are on your 8th chemo, you know what it's like. We aren't afraid that cancer will metastasize, we are afraid we won't know the right time to call hospice.   We are concerned with death planning, disability and insurance, how our children will grieve and how we can help them ahead of time. Some of us are hoping to find somebody for our husbands to remarry - I mean, she has to be nice to our kids and very sweet, but not too cute, if you know what I mean.

We wonder:  do we write letters or make videos for the kids or will that upset them?  How much funeral planning do we do and how much do we let our families do?  Will treatment cost too much and leave them destitute?   Will I know when to give up?  How much pain am I supposed to take before I ask for more meds, and if I take too much now will it render it ineffective during end days when I really need it? Should I buy that perfect Christmas present in August, knowing I might not be there to give it away?

We cancel all our magazine subscriptions, we write our passwords and hide them away for our husbands, we throw away that childhood diary we don't want anybody to read, we go through our treasures and mark them with what they are and who they should go to and why.  We slowly give things away so our family doesn't have too much junk to go through, and we never, ever, take advantage of out-of-season sales.  Why buy summer outfits, even at a deep discount, when it is October?  There is a strong likelihood we won't be there to wear it in July.

We are mourning our lives while living them, existing in the shadow between life and death, all the while wondering how long until the final chemo stops working.

Our experience is different than that of an early stage woman, and you may not be aware that there are very few support groups across the country for those with end-stage cancer - believe it or not,  there is no help for us in facing our own deaths.   Early Stage women have a support group in every city in the country; they have navigators and special camisoles and brochures to guide their way, and books! Hundreds of books about early stage cancer.

Metastatic women?  Almost nothing.  I believe there are fewer than ten support groups for advanced cancer listed in the US.   Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying "you will frighten the early stage women."  There are very few books for metastatic women as compared to the hundreds for early stage.   Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections.  Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now.  There seems to be little available for our emotional needs.

We don't fit in with our "pink sisters."  Our concerns are very different, yet we are expected to be just like them, after all, it's breast cancer.   Alone, we are left to deal with real issues of life and death.

You Can't Tell by Looking
There are a wide range of women with metastatic disease. Some have a low volume of bone mets and are still doing easier hormonal treatments.  They work, they look healthy, and you might never know they have advanced cancer.  They might look normal, but I assure you, they don't feel normal, and it only takes one scan to put them in a different category of functionality.  One where I am now - a person who is doing well but is somewhat disabled (which is still hard for me to imagine).  I have done seven different chemos and had many abdominal surgeries and had a life-threatening illness from which I'm not sure I'll ever recover entirely.   I can't work although I'd love to.  I am in pain, sometimes quite a bit,  and I have to limit myself, but if you saw me in line at Spirit Halloween buying a Grim Reaper costume, you might think I look a bit thin (and be super jealous, of course) but you wouldn't assume I was buying a costume of my twin.

Then there are women who are really struggling - they are on oxygen or in wheelchairs.   No matter how much cancer shows physically, all of us are dealing with end-stage cancer, and conditions can change quickly.  I've seen women in wheelchairs live four years, sometimes get up and walk again.  I've also seen women die 3 months post-skydiving trip.  You can't tell. This disease can turn on a dime.  If you know somebody with whom you need to make peace, do it now rather than later.  Later may not come, even if your friend looks fine.

Chemo Is Not Harder if You are Bald
Oddly enough, people think that if you are on chemo you will be bald.  Not all chemos make you lose your hair.  The chemos that they give for early stage breast cancer as a preventative treatment do cause hair loss but most of the ones for advanced cancer do not.  Know this:  how hard a chemo is on you has nothing to do with your follicular status.   I have felt a lot worse on chemos that left me with a full, lush head of hair than on chemos that left me looking like Crazy Britney.   If you hear we are doing chemo, you should pity us and bring us presents, even if our hair is shoulder length.  Actually, you should pity us more, because we have to do chemo AND shave our legs.   Assume nothing by what's on the head.

Treatment Never Ends
We want you to be aware that when you have Metastatic Breast Cancer, treatment never ends.  People often say to us, "Oh, how long are you going to do chemo? like the answer will be four or six rounds as it is with early stage.  The answer is we don't know.  We will do it until our cancer cells morph and mutate and learn to not die in its presence,  and then we'll switch to another drug.  I have done 7 chemos.  I have had half my liver cut out.  I have had microwave ablation and then gamma knife radiation.  I have done 3 targeted therapies.  As soon as one thing stops working, I start something else.  Cancer wants to live, it evolves like a cockroach in the face of a pesticide -  it learns to survive.  Eventually, there will be nothing left and that is when, I hope, I will be strong enough to call hospice.   So don't ask a metster how long they will be on treatment, or when they'll be done.  The answer is "never."  They will never be done. When they stop, they die.

Awareness is Not for Us
Awareness has never helped a single cancer patient, metastatic or not, but it is especially annoying for those of us who are losing the "battle" with cancer.  If you see the word awareness in a charity description, on packaging or on a flyer somewhere it's code for "we use our money in ways that won't help anybody who is actually sick or dying."

We want you to know that we need your money donated to charities that focus on RESEARCH.  Say that with me boys and girls:  R.E.S.E.A.R.C.H.  Here is some awareness for you - only about 5% of all monies donated to breast cancer charities end up helping metastatic women.

And, of course, you are aware that only metastatic women die of cancer, right?

Put those things together and you realize nobody is trying to save us.

We selfishly want charitable money to go to smart scientists in labs who can come up with a way to stop those cancer cells from dividing.   The good news is if they can figure that out, they can save early stage women too. They can save women who do not have cancer.  But they need money.

In the meantime, we are also okay with money going towards scholarships for our kids (most of us with end-stage cancer have had to give up our jobs) or direct patient services (such as rides, food, housecleaning and repairs, help with copays, a place to stay for our families if we have surgeries in other cities, etc).  My husband and I both worked and set ourselves up in such a way so we could live on his salary - all of mine was going to fund my son's college education.   And,I had to quit my job, thanks to cancer. Not to brag, but despite it all, my son has a 4.68 GPA in a difficult program and participates in many extracurriculars (which my husband has to drive him to).   A scholarship acknowledging how hard this experience must have been for him and how successful he's been in spite of it would be nice, but there are surprisingly few.

Pink Ribbon Tattoos?
Maybe I'm alone, but I find pink ribbon tattoos very puzzling. Granted, not all women hate the pink ribbon, not even all metastatic women (although all I know). Jewelry is one thing.  But some women tattoo the pink ribbon right on themselves, which confuses me.   I wonder - what if the woman was metastatic, if she understood that she would die of this cancer - would she still want that symbol on her permanently?  What if she wasn't metastatic and then down the road, became so, like 20% of women do?

If one lovely spring morning you were walking down the street, and roaring up behind you came a Peterbilt truck which slammed into you, squishing you flat as a bug, leaving your family behind, your children motherless, your husband without a wife, your workplace without their employee - and if you somehow caught a glimpse of this future - would you go out and tattoo a big Peterbilt logo on your ankle?  Or if, say, it squished your husband, would you memorialize him by inking a truck on you?

Maybe some would.  Hey, it takes all kinds.  But that's what a pink ribbon tattoo looks like to me, a metastatic women.  It's a symbol of the disease that's going to kill me.  And, it doesn't deserve a place of honor on my skin, where I have to look at it every day.  Not that you could see it what with all the wrinkles and scars and such, but you know what I mean.

"I almost died."
I love the TV show Parenthood, and one of the main characters just went through breast cancer last season. Already her hair is longer than mine is and last time I was completely bald was 3 years ago - ah the magic of Hollywood.  Anyway, Christina is doing what I suggest people do who have had cancer - live life fully, take advantage of this one chance you have, fully embrace it, don't look back.  So, she is running for mayor of her town.  You go, Christina!  Where's the ballot, I should be allowed to vote in TV town.   At one point in the show though, she was having an emotional moment with her husband, who is not as fond of her idea of being mayor as she is.  She started blubbering about her cancer and she said, "I almost died." and he agreed with her, "Yes, you did.  You did almost die."

And I'm sitting here thinking, "she did?"  When did she almost die?  Did I miss something?   She was Stage II, she did chemo, she had a lumpectomy, her doctor said throughout she'd do well, and now she's fine. Sure, it could come back, it can always come back....but it probably won't.  So, how did she almost die?  I never thought I was near death when I had early stage cancer, so what happened to her?  Was it off camera?  Did she have c-diff and go septic and her blood pressure crash and she was minutes away from death?  Why didn't they show that then?

TV People:  Having early stage cancer is not synonymous with "almost dying."

That statement is like the women I mentioned above who protested us metsters having space to talk alone about our specific concerns,  whose excuse is, "I'm not Stage IV yet" as if that puts them on the same level. They may have a 20% chance of becoming Stage IV, and I'm the last person to say it can never happen. But if they are still fine, if the odds are still good - why live with that "yet" hanging above a head like the sword of Damocles?

If you tend to do that, you can leave it off, you know, and just say, "I'm not Stage IV." Do that and give yourself that gift.

Speaking as a person who actually has a fatal form of the disease, who will die from it, it makes me ineffably sad hear the "almost diers." It's like every time you get out of your car after driving home from the freeway and saying, "Whew, I almost died."  Sure, you could have gotten into a crash that killed you, because you are in a thousand pound vehicle on a fast road with goodness knows who else - but you are still here.  Don't take that away from yourself.

Having early stage cancer makes you think of your mortality; you may be fearful that it will metastasize, but fear and worry is not the same as living it.  Christina, you didn't almost die.   You had a disease and were treated for it.  You were never close to dying.  Your friend there, the one who is Stage IV and is still going to chemo, the one who is still getting infusions and whom you say hi to each time you go in for your three month checkups?  The one who encouraged you to run for mayor?   SHE is dying, not you.

Thank goodness.

You might wonder why we need a Metastatic Awareness Day.  And, the truth is, we wouldn't if we didn't have the pinkness of the rest of the month bearing down on us.   However, years of ribbons and fun runs and soup cans and pink vacuum cleaners, and  inspiring phrases such as "save the tatas" or "save second base" or people who proclaim their near death experience when they were not near death have trivialized metastatic breast cancer to the point that one of the most common phrases people say to us when diagnosed is, "Well, at least nobody dies of breast cancer anymore."   And, that is even after we tell them we have mets.

So today, on MAD, I think you should know:

Metastatic cancer is not curable.  People die of it.  And I am going to be one of them.








57 comments:

  1. Hmmm, maybe I bring a different perspective. My mom died six years ago from mets. I sit here and write this comment just four months out of treatment for my own cancer. My own breast cancer at 32. I live every single day of my life waiting for the ball to drop out from under me again. I am Bcra negative, so you really can't even go on that. So while you may want to lump all of us early stagers together in a pink celebration, we do not all fit that mold.
    I am sorry that you have mets Ann, I am sorry that my mom died from mets, and that my 33 year old friend with two small children is filled with mets. It isn't fair, and regardless of how bad or far spread our cancer is, it sucks for all of us.

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    1. I agree, Wendy. I, too, am an "early stager" (that's a new term to me). I lost my dad and my stepson to cancer. The other shoe dropped for both of them. Cancer isn't fair and all of us, no matter the stage, should work together for research and the end of this disease. Cancer sucks!

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    2. Go you, Wendy. You spoke exactly what I was thinking. In one fail swoop here, all women who are not Stage IV are lumped into the "Got It Easy" category. Some of those non-Stage-IVers are grieving over the fact they'll never be able to save up for their child's college because their fertility has been taken away from them before they had the chance to conceive or even find a husband. That's certainly no picnic in the park.

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    3. Wait, what? Are you saying that being infertile is as hard as actually dying from cancer? Really?

      Really?

      I think you three are misunderstanding me. I never said being early stage was "got it easy." If you read my blog, you will see two years of posts I wrote as an early stager, and many since and nowhere do I say anything about cancer being easy Dear God. What I said - on *metastatic awareness* day, I might add - was that those of us who have mets have different concerns than early stage ladies do.

      And, we do.

      Sorry, but dying trumps infertility and therefore, not being able to save for college, no matter how you shake it out.

      Saying it's on the same playing field just shows how very much awareness we metastatic women need. You have no idea the difficulty inherent in watching your life slip away and seeing the sorrow in your families eyes as you spend days unable to get up, or hospitalized, and I hope that you never, ever do.

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    4. To many women who are handed their infertility on a breast cancer pink platter, it seems no less like dying than what you are feeling now. To them. Everyone deals with the cards they've been given & each breast cancer deck deals a bad hand. Your hand seems worse because you are the one holding it. An "early stager" sees her hand as a bad one as well. You have the benefit of hindsight to know how bad a hand can really get. She does not.

      The acronym MAD about sums it up, I think. You have every right to be angry and this post & your replies give evidence of that. But I wouldn't turn your anger on your breast cancer sisters, no matter their stage or yours. Being bitter at them for getting a whole month of pink isn't going to get anybody anywhere. As women we're all on the same playing field of life and we're here to support one another. Not play the game of "My cancer is worse than your cancer." "NO, MY cancer is worse than YOUR cancer." "No it's not, mine's worse and my doctor says it is, so there!"

      " I don't know the answer to how this day came into being or why women with early stage cancer get a whole month and a special color and everything, and we, the Chosen Ones, only get one day."

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    5. Cancer that is going to result in death, no matter what, IS worse than cancer that will not. Death is as final as it gets.

      Thank you for this piece, Ann, it's very powerful.

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    6. A powerful and moving piece, Ann. And these responses remind me of why some of the cancer forums I am on have a separate area for those of us who are stage 4. Any cancer is terrible, but living with the reality of a death than you CANNOT escape, not a death when you're 80, but a death in the relatively near future, is a completely different experience. Just as non-cancer folk can't understand us cancer folk very well, those with early stage cancers don't always understand those of us how have late stage cancer. And frankly, I think it's pretty inappropriate and find it truly lacking in empathy for these people to be commenting here as they did.

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    7. Ann, I've been following your thoughtful and wise blog for some time but have never commented before. I now feel compelled to do so. As someone who has never had cancer (my mother and grandmother both had bc but thankfully survived it), I am appalled by some of the responses to your post. How someone could equate infertility with certain death is beyond me. People who think like that clearly lack empathy. I fell sorry for them too, but for a different reason than they suspect.

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  2. Hi Ann
    Thanks for calling attention to this day ahd the very real need for it.

    Unfortunately, I believe all of those who worked to get the first proclamation have since died.

    I believe the date was chosen because it coincided with a metastatic event planned on that day in October 2007 in New York City, which is where MBCN was founded.

    Per the MBCN.org website:
    A committee member, Amy, suggested we come out of hiding during "pink ribbon month" and she contacted Mayor Bloomberg's office to request a proclamation declaring October 13 (the day of a metastatic program sponsored by MBCN, YSC and NYU Hospital) to be Metastatic Breast Cancer Awareness Day in New York City.

    We let our members know and in almost no time at all, Living Beyond Breast Cancer got a proclamation from the mayor in Philadelphia, PA, and Ruth Gesmer Silverman in Buffalo Grove, IL and Meg Fels in Princeton, NJ. followed suit, resulting in similar proclamations for their cities.

    http://mbcn.org/about-us/category/history-of-mbcn/

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    1. Thanks so much for giving me the facts. I really had no idea and it is good to know how this all came about *hugs* to you.

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  3. Ann,

    Thank you for this excellent, informative post. I don't know what it's like to live with mets, but I am so painfully aware of what mets does to people. I took care of a friend who ultimately died of mets. I saw her suffering.

    I miss her everyday. Thank you for always telling your truth.

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    1. I sometimes think I would like my end days filmed but certainly could not ask my family to do such an intrusive and ugly thing. Even Farrah Fawcett tried and we last saw her a few days before the end in a very short scene - it was just too hard for everybody. I just keep thinking it might give somebody some insight and stop this argument once and for all, and make the finality of death real for people. Clearly, words are not enough.

      But then, I know better. I think there is a special kind of insensitivity or inability to see anybody's experience but their own in people, and nothing can penetrate that.

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  4. Bravo Ann, one of your best ever! You always make me me laugh, cry, then laugh again and cry again. And reread and repeat. I never thought of myself as even close to dying or skirting death with Stage II, but I'm glad to know the chances of METS, rather than the misleading 5 year survival rate. It ain't pretty but the more we share it, the more funding for Metastatic, which is hard to spell, pronounce and for some people, talk about. XO. I appreciate this post, it was real and riveting

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    1. Hugs to you Valerie, and thank you. Let's hope your Stage II stays that way forever and you hit five, ten, fifteen, twenty and then fifty. That would make you pretty old, but isn't that wonderful? :)

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  5. Thanks for telling it like it is, Ann.

    ~Kate, of Kate Has Cancer

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  6. Oh Ann, sending you lovelovelove. Good for you for speaking your mind. People can be so strange and insensitive. My husband was diagnosed at Stage IV lung/bone cancer and a lot of friends just didn't seem to "get it". That was 2 years ago. He entered Hospice care last month, as he now has brain cancer. Hospice has helped him SO much with his pain. Anyway, I just want to let you know how much I care about you and that I am so very sorry that you are on this cancer journey too.

    Big love, Deb

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    1. Deb, I'm terribly sorry about your husband. I hope that he isn't suffering and his final days are peaceful, and you can also find some peace within this tragedy.

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  7. Ann, your talent for educating us, making us laugh, making us cry, and making us angry all at the same time is just one more reason it's ridiculously unfair that you are dying from this disease. I'm with Val-at Stage II, dying never even crossed my mind. But I sure as hell didn't know anything about the women who die from this breast cancer which bears little resemblance to the disease I "fought." Thank you for breaking this down for the rest of us so we can join in the fight for R.E.S.E.A.R.C.H. (see, I was paying attention...) XOXOXO

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  8. I have been diagnosed with regional metastasis of a triple negative breast cancer.... same DNA so really, it went into hiding while I deluded myself that my stage II was cured. I am now stage III and fortunate for the time being that I started chemo at the time I stopped being able to take a full breath..... cancer sucks no matter who has it and while I do not subscribe anymore to purchasing pink, have a nauseating aversion to the cancer clinic I now must be a member of for the rest of my life..... I live life on my own terms and blog my adventures like most of you do because if it helps one person.... it is helping. Thanks for this blog.... it is very sobering and a lesson for all women who are diagnosed.

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    1. I'm so sorry about your relapse. Let's just hope that your Stage III doesn't progress. I have a good friend, only 26, who was IIIc. She was diagnosed same as me and is still cancer-free. Yes, she does have regular treatment but she's doing good and I hope both of you - and everybody like you - continue to do so.

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  9. Um...you could get hit by a bus. Just saying. :-)

    Ann, you are helping so many people.

    God Bless atheists like you!

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  10. my own PCP told me when I was first diagnosed that "no one dies of bc anymore" WOW and R U KIDDING ME - this is from a doctor. I lost a good friend 2 years prior to this horrible disease and knew damn well what the reality was. I just recently had someone tell me that we can "cure" bc now, and then in the next sentence tell me about someone she knew who was just diagnosed with mets -huh? they must have not used the magic cure on her then. People want to live in their pink bubbles - I

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    1. I think that is a doctor I'd switch away from.

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    2. I *think* what your doctor meant to say was that "no one dies of cancer in the breast. It's when it moves out in to the body that it kills." That's what my onc told me.

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    3. That makes sense. Sometimes doctors don't perfect what they say. It's hard to imagine any oncologist saying that folks don't die of cancer. :)

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  11. Ann. I am so sorry. So very very sorry. Be angry, you have every right. But then, as I know you will, you will get up tomorrow and find the funny in things. You will find people that share your beliefs, and laugh with you. Maybe you already have , or you will, find those metastatic people, who will bring you new perspective. I believe with active dying comes wisdom, but we always have more to learn. I hope that your anger is fleeting, and you find peace today. Sending you love.

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    1. Sorry this came across as angry, I really didn't mean it to be. I'm not angry for the most part. Just sad.

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  12. Loved every word of this!
    For the past several days, I have been posting on my Facebook short blurbs about mets and appropriate pictures to get people's attention. And it's partly in self-defense. Must be working. I haven't been sent any more pictures of those mammo-grahams (graham crackers with filling that looks like breasts) since I started posting all my "serious" stuff.
    I'm with you on those ribbon tattoos. Who want's a permanent reminder etched into her skin? Maybe they didn't get one of those "lovely" radiation tattoos though, and are jealous. The only pink ribbon I wear is a necklace made by an elderly Native American who was being treated at the same radiation clinic. One day he gave me a pink and white beaded necklace with a pink ribbon made of silver. He said he had made it for me to remind me that many people were praying for me and God was with me. I hope his treatments were successful and he is enjoying his grandchildren.
    Yes, I was one of those who thought I was about to die at the beginning of treatment. But in my defense, I had a very fast moving stage 3 inflammatory breast cancer. You should have seen how fast they were moving to start my chemo. It was enough to scare anybody. And in just a few weeks my breast had gone from the faint rash I had originally seen to being swollen, painful, and being covered with the peau de orange IBC rash. The ones who had a little bitty lump who talk about almost dying are indeed annoying.
    I have heard a rationale that if they can prevent or better treat early stage cancer, that they will prevent more mets from occurring. Nice thought, except what about those of us living with it now? And what about those who have already been treated for early stage with current treatments who are destined to develop it 5, 10, 20 years from now?
    I am trying to live with more gratitude and less why me. Right now, I have bone mets and am on hormonal treatments. I realize that in the mets world, that makes me one of the "lucky" ones for now. But I also realize, that just like when it was discovered in my spine, things can change in a heartbeat. In many ways I am reinventing my life, but it must be a life more aware of how fragile life truly is. That each day is a gift, not a promise. And I am finding my desire to enjoy life while I can is very much at odds with certain family members' desires to overprotect me.
    I'm with you about how we are left out of so much of the pink stuff. Many people seem under the impression that mets is a thing of the past. Some people are just plain uncomfortable with us. After explaining my illness to the new HR person at my former employer (still trying to get disability - but that's another story), she cheerily told me as I left, "just think positive and you can beat this." ERRRR!!!!!
    There is a local support group here in my little town. I am uncomfortable. They have teas and cooking classes and fashion shows and laughing yoga (don't ask). Instead, I drive 45 minutes each month to a support group that includes both early stage and mets. Last meeting, we had a lymphedema expert.
    I don't know how long or hard the road ahead is. I want to live. Only one of my kids is married. I want to be at the others' weddings. I have one precious grandbaby. I want to see him grow up. I want him to remember me. I want to see his future siblings or cousins - my yet to be born grandchildren. I have music to play. Stories to write. I want the things I used to take for granted that there would be time for.
    About that funeral planning. My family can plan whatever they want to except, I am picking the music!
    Elizabeth J.

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    1. I can't tell you how many times I've heard "think positive and you can beat this." That's where the awareness is lacking - nobody thinks it's a fatal disease anymore.

      Those rad tats are yucky, so dark. But at least now I have one! :)

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  13. Thank you for this post. I didn't think you sounded angry at all. I'm actually quite shocked that some of the earlier responses were so negative. It's like someone who has been given several years in prison saying they know exactly what it is like to be on death row... um no, you don't. The 'end' of your time looks quite different - one - you walk out of that horrible situation, forever changed... but walking out, living life, free. The other - never free, the end is death, when isn't certain but the why is determined already.

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  14. A terrific column, Ann, but I have to disagree only on one point: You are NOT an ugly stepchild. You are one of the most beautiful people I know and it's your experience, compassion and humor that makes you such.

    I sit here in awe of you and your candor.

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  15. I think that people get caught up in their own dramas sometimes. I had cancer too, and I think that there is a period following treatment where you stumble around and try to regain your footing. It is scary. Are you done with cancer? Are you NOT done with it? My cancer was (as explained to me) the sort of cancer that has a tendency to travel in the body, making recurrence more likely. They played Pomp and Circumstance on my last day of treatment and sent me out the door with a certificate. I spent a lot of time awake in the night, trying to wrap my head around it. Didn't help that I had two more false alarms. It felt like a big deal at the time. I'm now five years past the original diagnosis, and I'm much more matter of fact about things. I think, Ann, had I read this 3 or 4 years ago, I would have felt your words much differently. Struggling with my own fears, I would have felt that your words were dismissive of my fears and my struggles. Your words would have made me feel ridiculous and over dramatic. But as I said, a great deal of the fear is simply gone. Today I read your words and see the truth of them. My own struggle is past at least for the moment. Your own struggle will never be past again. You have a right to feel cheated and betrayed and frustrated and sad and even angry, if you get right down to it. Nowadays, I read your words and I think "There but for the grace of God..." I am ashamed to write that, but Anne, it is the truth. Cancer is a thief. I hope that everyone here can accept the fact that you are a powerful writer. You are a woman going through what most of us fear most. There is no cause to attack each other for saying what we feel.

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    1. I always write things with the understanding that I have 500 other posts here, so if somebody takes a post as if it were an individual article it always surprises me. It is a blog, not a newspaper piece and people should, if they read something on a blog, hunt around to see where the person actually stands on a subject. Of course, knowing the way the internet works I know this could be somebody's landing page and this is what they see: they won''t understand the full story. But I can't explain myself every post either. :)

      I am hopeful those read my entire blog, or even a some of it, know I have always supported early stage women and would never consider anybody "over-dramatic" for their fears and feelings. I *was* early for almost 2 years and wrote it all here.

      And, Debby, don't be ashamed of being grateful you are in your position. I want you there - every metster wants you there. None of us ever wants a person to become metastatic and all of us wish it would stop with us. I know we are all happy you are grateful that it has not progressed, as you hould be. Never feel bad - you SHOULD be happy this disease seems to be over and you are in the winning percentage. I hope and am sure your health will continue and creates a very long and very happy life.

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  16. You are spot on with this blog. Thank you for posting it. I do not see anger....I see reality in your words.
    I often see early stagers get defensive over what we MBC people post. We have been early stage....we understand what it is like to be there. They have NOT been stage 4. They can NOT understand.....and hopefully never will.
    Thank you for expressing your thoughts that are so true for so many of us.
    Would love to post this column for all to read.....but from reading the comments, I see that even when reading about our reality... others will still not get it.

    (one correction.... ballOt, not ballEt)... I got a little confused when I first read that sentence.)

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    1. ARG!!! Me and typos....I'll correct it. Thank you!!!

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  17. As an "early stager" I appreciate both the post and the dialogue that follows. One thought that came to my mind: sometimes it can be hard to generalize. I, for example, truly did have the experience of "almost dying" - but it was not from worrying about what the cancer might eventually do to me. It was because an artery opened up after my double mastectomy and I nearly bled to death, internally, before emergency surgery fixed the problem. Phew! I am still here - but it was traumatizing.

    That said, I recognize that NO "almost dying" experience, however traumatizing, can EVER be similar to having metastatic breast cancer.

    Thanks for speaking out, Ann.

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  18. Ann,
    I feel that "Anonymous" is patronizing towards you, I cannot believe you are still having dialogue with this person! Anonymous is trying to discount your feelings and it is a crazy thing for someone to say that anger is not going to get us anywhere "But I wouldn't turn your anger on your breast cancer sisters, no matter their stage or yours. Being bitter at them for getting a whole month of pink isn't going to get anybody anywhere." Oh, but it has! There is a newly formed MBC Alliance with 15 non profit org's now willing to step up to the plate and speak the truth! Since it's announcement on Friday, Komen and Dr. Love Research posted blogs and on the fb pages and I am not shocked at the reactions of several early stagers saying things like "Oh, how insensitive" or "This fact just ruined my day" I believe the ugly head of ignorance is rearing it's pink head and the lack of acceptance that has always been a hush hush ordeal "don't let the dying person walk with us", "don't campaign for stage IV-too depressing" and all these decades of throwing us under the "bus" is now spewing it's disdain against the newly formed alliance because it speaks volumes about what the truth really is-so anyone less than "terminal" needs to get their heads out of the clouds and get with the program-stop separating and dividing us as this has been going on for too damn long! As I posted on another chat board, I will also post my statement here- " I will tell all of you early stagers like I told them on the Komen announcement, get use to hearing the truth! 30% of BC metastasize's to stage IV, now you can sit here and cry about the titles being insensitive or that you want to stick your head in the sand, but when your cancer team tells you that your cancer has advanced, you will learn very quickly that there are no support groups for you, limited treatment options to explore and your quality and quantity of life diminishes expotientally and you have to tell your children that you can't plan their birthday party because mommy is bedridden and soon will be in Heaven or wherever-get my drift! So put yourself in these shoes for just one minute-wouldn't you want stronger and more robust research efforts going towards metastatic breast cancer research and programs specifically for this minority group? I am stage IV, and I am tired of being ignored and so are over 150k women and men living with MBC and 40k dying each year in which this number of deaths have not changed in over 2 decades! Please support stage IV as this could be you typing this message one day instead of me!" And if anyone cannot procreate-ADOPT! There are many orphaned children in the world that need loving families! At least you have that option-a metster cannot even get in line for that as our terminal cancer condition disqualifies us! I do not wish to start an argument on Ann's blog, she has enough to deal with-I just wanted to say my truth and move on to all the other ignorant people out there on the internet that need a wake up call! For more info on the alliance www.mbcalliance.org

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    1. So very well stated, Theresa.

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  19. Ann ~ I was diagnosed in 2010 (Stage 1) and saw many of your posts on the bc forum. You were controversial even before you were Stage IV. :) I haven't always agreed with you, but you usually made me think. One of the MANY things I learned from my participation on the bc forum was that people have widely different reactions to early stage breast cancer, especially their own. From "it's no big deal- I'm going to do what I need to do and move on" to "Help me!! I'm hysterical because I have a BIRAD score of 4 and they want to do a biopsy". There also seems to be an equally wide variation as to how people deal with Stage IV. No one is "wrong" for how the choose to (or can't help the way) they deal with breast cancer. But how we treat those with bc, learn to understand what those with bc are going through - whether it be stage I or stage IV is infinitely helped by education and (dare I say it) awareness. But not the "pretty in pink" awareness. The cold hard facts awareness. Forums and people like you are doing that by writing this blog and getting real stories out there that aren't tied up in a pretty pink bow. I think the Komen campaign was needed when it first started. (i.e. women were ashamed and could barely say the words BREAST cancer out in public). And now the message needs to start shifting more towards the fact that people are still dying from the disease and more money needs to shift towards Stage IV treatments and a cure. Thank you for being so open and sharing your BC experience, Ann. And for bringing some honest awareness and a face to metastatic breast cancer.

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  20. Ann, Just to let readers know, SHARE has telephone support groups specifically for women with metastatic cancer: 866-891-2392.

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  21. Love this, and loved your last entry as well. That's all I can say. :)

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  22. Really this is a contest? Mine is worse than yours? I'm a stage IV survivor and I've learned the hard way that gaining support and awareness doesn't come from diminishing what other people are experiencing. And healing doesn't come from focusing on dying; it comes from focusing on living.

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  23. I really do not understand how your post could generate anger from someone who elects reading the post and then persists in arguing with you. Some of the topics you discuss involve subtle nuances of having Stage IV cancer and it is hard to capture subtlely with written words. Not all Stage IV cancer is created equal and I have enjoyed years of being NED which means that you and I do not have much overlap at the present time. I do privately fume with how insensitive people can be. Last week, I was at a wedding at the same table as a woman who had had stage 0 cancer (lumpectomy and one week of radiation). She started talking about how we were both survivors of cancer. I just really did not feel good about lumping our experiences together. I know it is subtle. Call me fussy, but I just didn't feel a commonality with her cancer experience. This is not to say that her being diagnosed with cancer was not traumatic. It is just that we really belong to two different clubs. She can go out and wave her pink ribbon while I cringe when I even see a pink ribbon.

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  24. Well-written, cynical, angry.

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  25. Reading some of the comments posed to Ann literally made me physically ill. There's nothing I can say that hasn't already been said but I will say this: What CLASS and TACT Ann has to deal with such insensitivity as well as she has.

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  26. Hi Ann,
    While I don't always agree with you, I do always admire your wit, candor and wonderful sense of humor. Thanks for sharing your point of view. Enjoy that special son's birthday later this month.

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  27. Hi Ann,
    A friend of mine who sent me your blog, and although neither of us have stage 4 breast cancer we two do have stage 4 metastatic lung cancer! What you write and feel is exactly what my friend and I feel with our situation. With our particular type of cancer there is also the stigma that is attached to it, like we are to blame for our fate, and that is not always the truth, ask Valerie Harper. I will bookmark your blog as I feel your voice could be mine and my friends. Thanks for your insight and humor around this constant life challenging situation we are in. By the way November is Lung Cancer Awareness month, our color is White but no special day for metastatics, as far as I know :)

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  28. Ann, I stumbled across your blog while in the process of being diagnosed with lung cancer. I found it so powerful that I read it from start to finish. You rock!! I have come to hate all things pink simply because they are mostly a marketing ploy.

    I have to agree with Margie L. about the stigma associated with lung cancer. Even during Lung Cancer Awareness month there seems to be a lot of blame placed on patients. It all centers around stopping smoking even though a large percentage of LC patients never smoked. There is not much support even from the ACS.

    As a Stage1 patient I am sure I do not fully understand what a stage 4 cancer patient endures. Lung cancer has a poor prognosis even with early detection, but I know that waiting for the other shoe to drop is not the same as having it already dropped. I once wrote that I feel like a fraud when I say I have lung cancer when I read the stories of Stage 4 patients. Our daily lives and expectations are so very different.

    I wish you all the best, Ann. I wish I believed in miracles because you deserve one.

    Sue

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    1. For Margie and you, I have stated in the past that I think you with lung cancer get a raw deal. Even a smoker doesn't deserve cancer. However, it is especially terrible for non-smokers because they are essentially being blamed for their own disease. Nobody seems to know that you can get lung cancer without ever having put a cigarette to your lips. And, people automatically assume you were at fault when they hear lung cancer. It happens some in the breast cancer world but NOTHING like what you gals go through and your education curve is a steep one. My best to you.

      We all deserve miracles.

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  29. It's not just stage IV women who die from breast cancer. There is even a more obscure group to which I belong, a group which really makes other people want to cover their ears and sing la-la-la to drown us out. It consists of patients who have been greatly harmed, or killed, from their treatments.
    Remember when you first had chemo, when you got the nasty red stuff in a huge syringe pushed into your arm? Your doctor or nurse may have given you a very soothing little speech at some point, saying that if your MUGA scan was fine, and you had no history of heart problems, that four AC chemo sessions shouldn't cause any heart damage,that the risk was low. Well I apparently hit the lottery, and am one of those oh so few people with heart damage. I couldn't celebrate the end of chemo since I was in the cardiac intensive care unit, with my husband at home taking care of our son.
    And what of other patients who are part of those stats that doctors like to gloss over? The ones who die from Tamoxifen, aromatase inhibitors, Cytotoxin, Herceptin, Neulasta, Neupogen, heart damage from radiation, and so on? No one is throwing us a party either, and people just do not want to hear about these supposedly life preserving treatments that can turn around and take you out.

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  30. I'm sorry that you have an end-stage form of heart disease. Did they give you a prognosis? Is there any chance they can do a heart transplant? I understand what it's like to know that you will miss all the milestones that your son has coming up - it's heartbreaking to know you won't be there.

    I think your story is important for people to know - while Adriamycin (Doxorubicin) is known to cause heart disease, especially in conjunction with herceptin, it is often glossed over because he side effect is rare. People should know about it though.

    Your description of how your doctor shared it differs from mine. I am fully informed, plus I get a print out of each of the chemos and drugs I'll be taking as well as the potential side effects, all of which are also explained to me. So I'm really sorry that you didn't experience that.

    For newbies, it's good to know that the package insert explains it all, which is online at each company that produces a drug. I highly recommend that everybody read these pieces of information before they take a drug. Those inserts (the medical ones, not the patient ones) are very helpful as they tell you the percentage of people who had any given side effect with each trial.

    Most of us get MUGAs or Echos every three months to check on heart function and that, I believe, is a requirement for taking the drug. I have had 16 or 17 of them at this stage. Unfortunately, there is no way of knowing who will respond poorly - and who would want a drug that has helped tens of thousands pulled because a small percentage had a negative outcome? I know that these drugs have kept me alive.

    Everybody should know that all drugs can cause negative side effects - including even supposedly harmless drugs, such as Tylenol, which can cause liver damage when taken in certain doses. Those side effects listed do happen to real people, as this anonymous poster has proved.

    The only answer is that a patient has to become informed of the negative consequences of taking any drug and do their own risk/benefit analysis. Nothing comes without risk.

    I'm terribly sorry that you got the wrong end of the stick. I do hope your remaining time with your family, however short, is full of love and light. *hugs*

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  31. And for all the sniping about your choice of words, I love how this conversation ended with a display of your compassion and kindness. I will say it again: You have a right to say what you feel, and there is no reason for anyone to take umbrage at how you feel.

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  32. Ann,
    I apologize for assuming the post was angry. I have followed your posts from the beginning. I have watched too much suffering from this disease to ever have written a patronizing comment. It was not meant that way.

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  33. Ann, your post has stayed with me and really made me think about how living with a fear of an outcome is so obviously radically different from living the outcome. What seems so obvious is in fact not to all of us. I am a stage-2er who has done my fair share of worrying. I am also a stage 2-er who lived at a hospital caring for a 23yr old sibling dying of cancer, and so I know the difference between my symptomless cancer and the horrors of her very symotomatic cancer. Yes, treatment is a hard go and makes people feel awful. But then people like me recuperate and as you have pointed out, we have the chance to move on. I also think it is important to highlight your point about how early stage and stage IV might as well be different diseases. From a biological perspective, they are. Just like cells have to go through changes to become cancerous (and we all agree pre-cancer is not cancer), so too do cancerous cells have to undergo changes to become metastatic. It IS a different disease, and these changes and processes remain mostly mysterious and why we do desperately need research on metastasis. Keep raging and cracking jokes - I for one am listening and laughing.

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  34. Don't take the ladies seriously who see their infertility and lack of saving for college and fear of developing mets as the same as going through it. They focus on their own losses because they fear becoming us.
    I posted something on another site about breast cancer awareness needing to include about permanent collateral damage from the treatments women with advanced cancers endure and was accused by one person of trying to compete (really?) and trying to divide breast cancer "sisters." Ironically, she unknowingly proved my point. She did not know and clearly did not want to know about the lifelong struggles of chemo neuropathy, lymphedema, radiation damage, etc.
    There are degrees of good and bad in everything. I have bone mets. I have been told that in treatments, in quality of life, in prognosis, at least at this point, I am better off than someone with liver or brain mets. To acknowledge that there are others worse off than myself does not diminish what I go through, but it does put it in perspective. A prognosis of a few years is better than months. A treatment with bone aching and hot flashes is more tolerable than one with constant throwing up. Infertility is certainly not as bad as death. To not admit these things would be selfish.
    We are called to "bear one another's burdens," not to seek to equalize them. All breast cancers, and breast cancer treatments, are not equal.

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  35. Ann, thank you for your words of wisdom. I did not have the same response as some of your other comments. I never thought you belittled those who were in the early stages of Cancer.
    My best friend is undergoing treatment now for breast CA and it has been an emotional and difficult journey, but she does it with grace and joy of living each day. She is going through these difficult months with the hope of a healthier future.
    I can't imagine your journey and the difficulty of living with two purposes: fighting to survive as long as possible and preparing for your death.
    I wish you peace and as many days as possible to spend with your family.
    Thank you for sharing your story.

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