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.

Chemo: The Good, the Bad, and the Just Plain Weird

So I'm on a dose-dense treatment of Taxol. I've just finished 9 infusions, with 12 more left to go. It's working out pretty well for me so far. My primary tumor shrunk by 50% after just six, and I get another CT scan after I'm done with these next three infusions. Each round is three infusions, followed by a week off. I'm currently on my week off for round 3, and I start round 4 on Tuesday, March 4th.

The bad: Hair loss on my head, and I'm losing my eyebrows and eyelashes. I also have really dry sinuses, and keep getting bloody noses and blowing out clots and scabs. Disgusting. And there's the fatigue. The Fridays following my chemo Tuesdays are always my worst. I feel like a giant bruise and just want to curl up and sleep.

The good: no nausea or neuropathy to date. I did have one day where I felt queasy if I was up and moving around, after my 9th infusion, but that was the first. Hair loss does include my legs and underarms too, so I'm not having to shave anymore so I'm saving on razors (and shampoo). Also, I've stopped bleeding. Which means no cramping. So I don't have to deal with periods on top of this. That's very nice.

The weird: I eat so much! I'm always eating. I'm hungry. I can pack away food like never before. I crave it all, the protein, the carbs, and the sweet desserts. Tonight I had a  huge piece of Lasagna from Old Chicago, and I just decimated it. And I still somehow had room for the craving for dessert that kicked in when I was 3/4 the way through the meal. Frozen yogurt and fresh fruit.

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.

Daily Living

There. Now that today's bit of morbidness is out of the way, time for something lighter. Thriving is not obsessing over dying, after all. (It is, however, geeking out over tunes, a couple of those songs which didn't seem to rhyme were actually just the English translation of the Japanese lyrics. Yes, I want anime music at my visitation. I'm too much a nerd not to have that.)

My parents are in town for a short visit, and they are too damned generous. Our bed broke a while back - the frame got pulled out of alignment and the box spring fell off and snapped. I was going to order a new bed off Overstock when my tax refund came in, but it was on sale at an even lower price than what it already was. (500 for a rather nice Serta mattress and box spring set, on sale for 400, and with free delivery that includes the delivery carrying the mattress up the stairs, taking our old one out, and setting up the new one for us.) So Mom ordered it for us, as a gift. A new comfortable bed to replace our 14 year old mattress. Hooray!

We went out yesterday to Cheddar's for a nice lunch and then hung out at their hotel for a little bit and exchanged presents. I got my mom a lovely spirit wings pink ribbon shirt, and my dad a Tough Guys Wear Pink shirt. Today, they picked us up and we went to Red Robin for lunch, and then over to GNS Vapor for me and Mom to get ourselves some more ecig juice. I had them whip me up a custom blend - chocolate and strawberries. It's delicious! Mom bought a bottle of my go-to favorite, Chocolate Candy Cane, for herself, and a new tank.

Then we hung out in the hotel a bit more today, and tomorrow I'm picking up Dad and we're going into Seward to get insurance for my car from a local company, switching away from Allstate. Suhr and Lichty are good, I've been told, and the rate they're quoting me is even better than what I'm paying Allstate right now, so that'll save me some money.

Dad gave me some more money, bless him, and I'm going to use some of that to apply to the Bryan School of Nursing. Wish me luck!

Songs for Funeral and Visitation

So actually my choices suck :D Never mind this post.

These are songs I'd like to have played at the funeral itself, and as a background songtrack at the visitation. The songs are in the best order for the funeral, but for the visitation soundtrack, I'm not sure on how they ought to be arranged, I'm going more by lyrical content and not sound. If the visitation window is longer than the length of the songs, plus the four for the funeral, then that's what looping things is for. Listing each song, with a short excerpt of lyrics.

Funeral: 

These Are the Days of Our Lives, Queen

Those were the days of our lives
The bad things in life were so few
Those days are all gone now but one thing is true
When I look and I find I still love you

When the Crowds are Gone, Savatage

So I plot and I plan, Hope and I scheme
To the lure of a night, Filled with unfinished dreams
I'm holding on tight, To a world gone astray
As they charge me for years, I can no longer pay

City of Hope, Stevie Nicks

The years don't really matter. It's just a matter of time.
Ooh, it's just a quality Of a few precious hours.
And the charmed one, No matter how bad it is,
Well, I've already lost One guiding light.

High Hopes, Pink Floyd

Beyond the horizon of the place we lived when we were young,
In a world of magnets and miracles,
Our thoughts strayed constantly and without boundary,
The ringing of the division bell had begun.

Visitation: 

Amazing Grace, The Maverick Choir (no lyrical excerpt - everyone knows this song, this particular cover, however, is upbeat and joyful.)

A Place in the Circle, Rich Follett

Oh, my friends, oh, my loved ones, I must leave you.
My time has run like water through a sieve.
Gentle souls, do not let my passing grieve you.
Better far to rejoice that I have lived.

I Will, Sowelu

If it's the overflowing tears, it's okay that they don't stop now
Light should be shining into the finale of the sadness
Time that passes by unhesitatingly and unhurriedly
I won't forget the pain that changes into kindness

Lost Heaven, L'Arc~en~Ciel

We’ll say goodbye, lost Heaven.
How we longed for Heaven.
We’re letting go of something we never had.
Time goes so fast, Heaven is lost.

I'll Meet You There, Whiteheart

Now we must say good-bye,
And find our road ahead.
Destiny leads us to a better place,
And I'll meet you there someday.

My Last Step Beyond, Edenbridge

The guardian angels they're calling my name
An astral dream in the sky?
They're dancing at the carnival of souls
They dance into the light into eternal light

Seasons of Love, RENT

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand journeys to plan
Five hundred twenty-five thousand six hundred minutes
How do you measure the life of a woman or a man?

I Grieve, Peter Gabriel

I grieve for you. You leave me.
So hard to move on, Still loving what's gone,
They say life carries on, Carries on, and on, and on.

Thanatopsis

These are the excerpts of Thanatopsis I'd like read at my funeral, someday far into the future. I've always loved this poem. I honestly prefer Emily Dickinson's views on death, but none of her poems have quite the right feel to be read. They're powerful, but a bit too raw and blunt. This has the right tone and the right level of comfort.

Thanatopsis - by William Cullen Bryant

The following are the desired excerpts. Full poem can be found at the link above.

Yet not to thine eternal resting-place  
Shalt thou retire alone, nor couldst thou wish  
Couch more magnificent. Thou shalt lie down  
With patriarchs of the infant world—with kings,  
The powerful of the earth—the wise, the good,  
Fair forms, and hoary seers of ages past,  
All in one mighty sepulchre.   The hills  
Rock-ribbed and ancient as the sun,—the vales  
Stretching in pensive quietness between;  
The venerable woods—rivers that move  
In majesty, and the complaining brooks  
That make the meadows green; and, poured round all,  
Old Ocean’s gray and melancholy waste,—  
Are but the solemn decorations all  
Of the great tomb of man. The golden sun,  
The planets, all the infinite host of heaven,  
Are shining on the sad abodes of death,  
Through the still lapse of ages. All that tread  
The globe are but a handful to the tribes  
That slumber in its bosom.—Take the wings  
Of morning, pierce the Barcan wilderness,  
Or lose thyself in the continuous woods  
Where rolls the Oregon, and hears no sound,  
Save his own dashings—yet the dead are there:  
And millions in those solitudes, since first  
The flight of years began, have laid them down  
In their last sleep—the dead reign there alone.

 So live, that when thy summons comes to join 
The innumerable caravan, which moves 
To that mysterious realm, where each shall take 
His chamber in the silent halls of death, 
Thou go not, like the quarry-slave at night, 
Scourged to his dungeon, but, sustained and soothed 
By an unfaltering trust, approach thy grave, 
Like one who wraps the drapery of his couch 
About him, and lies down to pleasant dreams.

I know that funerals are for the living, not the dead. The funeral should by rights be what loved ones left behind want, not what the dead want. But damnit, it'll be my last party, and I want people to attend and see my touch, my personality, my presence in everything. I'll be there in spirit - quite literally.

Dance Within the Flame

So. Metathriving. Why the cutesy wordplay off Metaviving, which is a cutesy wordplay in itself?

Well, for starters, I'm a writer, and I like me some cutesy wordplay, darnit.

Secondly, I've never quite liked the word surviving. If this were something with a beginning and an end, like a really bad bout of the flu, that would be one thing. But this is a new normal, my new life in Cancerland.

I'm not going to stand outside the fire just because I got relocated to a new normal.

Standing outside the fire.
Standing outside the fire.
Life is not tried, it is merely survived
If you're standing outside the fire.

Merely survived. I don't intend to merely survive this. Going through the motions of living to make it from one day to the next. Maybe some days that'll all I'll be capable of doing, and that's fine. But on the days I can do more, I intend to be more. Continue with my dreams, my goals, with living life. Not just surviving it, but thriving in it.

We call them strong,
Those who can face this world alone,
Who seem to get by on their own,
Those who will never take the fall.

We call them weak,
Who are unable to resist
The slightest chance love might exist,
And for that forsake it all.

They're so hell-bent on giving, walking a wire,
Convinced it's not living if you stand outside the fire!

In the truths that she learned

In the truths that she learned,
In times that he cried,
In the bridges he burned,
Or the way that she died.*

I don't want to die. Not ever, actually. If I could be immortal, I'd do it. But that's not a possibility. I certainly have no intention of dying anytime soon. That wasn't always the case, but it is now.

When I first was diagnosed with cancer, I thought, I can beat this. Even when I was told I had stage IV mets, I believed it possible to be "cancer-free".

So much pinkwashing.

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

That's kinda fucking terrifying to realize.

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

But like the pool or hot tub, once you're submerged, it no longer feels as bad as it did going in. Sometimes it's even a comfortable feeling. I've decided I want portions of William Cullen Bryant's Thanatopsis read at my funeral, such as: Thou go not, like the quarry slave at night, scourged to his dungeon, but, sustained and soothed by an unfaltering trust, approach thy grave like one who wraps the drapery of his couch about him, and lies down to pleasant dreams.

But I still don't wanna die anytime soon. I'd get my butt rez'ed and kicked for bailing out on a lot of people. I don't want my butt kicked, kthx. I promised I'd stay here, and stay here I intend.

But I'm starting to... realize that I've started the last three paragraphs with 'but' and I really need to stop that shit.

I'm planning my funeral, I just intend for it to be horridly dated by the time comes to use it rolls around. (Although I still plan for Queen, Stevie Nicks, and Pink Floyd to play at my funeral, because man, they're classic. The classics never go outta style.)

It's scary, but it's also liberating. "I will face my fear. I will permit it to pass over me and through me. When it has gone past I will turn the inner eye to see its path.Where the fear has gone, there will be nothing. Only I will remain."**

I was suicidal for a long time. Now, I have no desire to ever die. I didn't beat back chronic depression and lock it in a little cage to let cancer kick my ass. I'm never going to stop fighting for every minute. Realizing that I could very easily, and very quickly die from this didn't sap my strength or courage or motivation. On the contrary, it fortified it. I know there's no end to this war now. All I can do is keep from being overrun. The longer I fight, the more of the enemy I'll kill, and the longer I'll be here.

"If I'm going down, then I'm going down good. I'm going down, then I'm going down clean, I'm going down, then I'm going the prettiest broken girl you've ever seen."***

Being told you're going to die takes away the desire for it. Embracing the facts of it takes away the fear of it. Taking away the fear of it means a fuller, stronger, richer life. A stronger life means a chance for five hundred twenty five thousand six hundred minutes more, and more.


(*Seasons of Love - RENT; **Litany Against Fear - Frank Herbert's DUNE; ***Let the Record Show - Emilie Autumn)

Hi, I'm Susanne, and I have Mets

But then, you probably already knew that. I should introduce myself, shouldn't I?

I'm 39 at the time of this writing, and at the time of my diagnosis. In exactly 2 months, I'll turn 40. I don't do anything halfway, do I? Right off the bat, mets. The m-word. I'm a permanent resident of Cancerland.

Right now, it's not bad. I might even get a shot at the coveted NED award. No Evidence of Disease. It's not quite the death sentence it used to be. Not always. Sometimes it is. Sometimes you sit in that room and you're told something out of Hollywood: "You have cancer. You have six months to live." But sometimes you even get told that and end up thumbing your nose at that prediction for years to come. Sometimes you live for years with mets. It can sometimes be managed, but it will always be there.

Metastatic breast cancer kills. There's no cute way to soften that up. The clock is ticking, but we've got a chance now for more minutes added to that clock than used to be thought possible.

Five hundred twenty five thousand six hundred minutes... times two... times three... times twenty. Times more.

I've got a damn good chance at that more. I know there's also a chance I'll lose. But win or lose, I'm fighting this tooth and nail every damned step of the way. I'm not going to stop fighting. Even if I should ever have to ultimately make a choice to discontinue treatment to preserve quality of life, I'm still going to fight for every single minute more that I can possibly win away from this enemy.

In the immortal words of Bugs Bunny, as you know... this means war.

I'm not going to stop fighting for a moment. I have too much to live for, too much to fight for. We all do, of course. But no one's going to lose me if I have anything to say about it.

I'm realistic, but I'm not defeated. Optimistic, but not deluded. I'm digging in deep for the fight of my life, quite literally. I know this is the war that never ends, it just goes on and on, my friends. There is no "cure". This war will not end in a grand finale battle of pink ribbons and quippy quotes.

(Well, no, it'll have plenty of quippy quotes, we're talking about me here. I quip like I breathe.)

I'm metastatic.

That's an ugly word.

War is an ugly word.

But it's a damned beautiful life.