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.