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Five hundred twenty five thousand six hundred minutes

"Five hundred twenty five thousand six hundred minutes,
Five hundred twenty five thousand moments so dear.
Five hundred twenty five thousand six hundred minutes,
How do you measure, measure a year?

In daylights, in sunsets,
In midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In five hundred twenty five thousand six hundred minutes,
How do you measure, a year in the life?"

Tuesday afternoon, November nineteenth, 2013. I found out that the biopsy results came back positive for invasive ductal carcinoma breast cancer.

A year ago today.

I went from being completely pinkwashed (as my twitter handle VictoryOverBC proves) to having arrangements to pay for my funeral expenses underway. 

I'm also further from death now than I was a year ago, with the tumors either quite tiny or gone altogether. There's still microscopic metastatic sites that don't show on scans, have been battered into submission by chemo, and are being suffocated by hormonal therapy.

I retired, I finished a novel, I had my best month ever with NaNo, I've made new friends, and lost some of them. I've helped people, I've moved to a new house, I've gotten married. I've discovered I like potato salad when it's made with sweet potatoes, I've met an oncologist I'm glad to have on my side in this.

I'm re-evaluating my language when it comes to cancer. I grew up, as so many do, thinking of cancer in terms of battle language. I grew up on Tour of Duty and Platoon and Aliens, I'm a fan of the military group in Fullmetal Alchemist, it was as natural as breathing to adopt the battle allegories as my own in the beginning.

But I'm starting to understand how busted that language is, the way so many aspects of our language are busted in terms of women's rights and rape culture and racism. Just because it's how things were always said or done is not a valid reason to continue them.

I'm not sure what language I want to adopt to replace the war mentality. Because on one hand, it is a fight. But when you have metastatic breast cancer, by that terminology, you're fighting a losing battle, or winning a Pyrrhic victory, with NED coming with CHF and neuropathy. And many times you don't even get NED.

It's a fight, and it is a battle. If that language is busted, I'm not in a place where I can divorce that from my life in cancerland yet. But I can see that dying is not losing the battle. Living each day is winning. Each day that I have won since my cancer diagnosis is a victory.

Each minute is a victory.

I have five hundred twenty five thousand six hundred victories against breast cancer under my belt, and I intend on getting far more than that. I don't lose. I don't quit. Dying isn't losing the battle. There has to be another bridge here, for the metastatic crowd. It's not a win-lose dichotomy. Like how gender is not as binary as male-female, victory isn't either. 

The system is busted. The language is busted. And neither embracing nor avoiding the battle language is quite the answer. But when you're used to looking at either black or white, it's hard to pick out the shade of gray that falls between. I'm trying to see it, and I'm trying to describe it, and not quite managing it.

I'm fighting for my life, and every day, I win. When I go, I still win, because it will still be on my terms. The only way I could "lose" is if something else happened, like an automobile accident. That's not on my terms. I can't fight that. If I can fight, I win. Victory is measured in light. In love. Not in the calendar location of a funeral.

"In five hundred twenty-five thousand
Six hundred minutes,
How do you figure
A last year on earth?

Figure in love.
Figure in love.
Figure in love.
Measure in love."

I did it.

I don't exactly know how, but I did it. I have done better in this year's NaNoWriMo than ever before. I mean, look at this:

 

I don't know how I pulled that one off. I really don't. I just know I sat down and started writing, and boom. Story exploded all over me.

I accidentally the whole thing in 5 days. I'm not done yet, though. I'm maybe - maybe - at the story's halfway point, and this is the first of three. 

My carrot dangling in front of me isn't just visions of an agent and a publisher (although I will admit that would be nice) but nursing school. Since my diagnosis, I have been so scattered, so fatigued, so unable to focus and finish anything that I can't risk an application because if I do get in and burn out, it would crush me. But, if I can stay focused to finish, not just one novel but three, not just the rough drafts but a polished finished version, then I can pull myself together enough to be serious about nursing.

In the meantime, I'm going to sit here and stare at myself and try to figure out how I averaged 10k a day, and I'll share a little bit of the raw material I produced during this time

======================================

     The sunrays coming through the trees increased in angle as the day wore on, and although William was tired, there seemed to be a degree of tension in the group that worried at his nerves. Suddenly his horse shied, tossing its head back and almost clipping him in the mouth, and a shrill, jabbering shriek came from somewhere to the east.

While William was trying to make certain his horse didn't bolt out from under him, Baeron and Jo were already nocking arrows, aiming in the direction of the shriek. The woods were as still as death, then he heard the noise again.

"What was that?" he heard Anna ask, her voice low.

"That was a bzoar," Roth replied. "That's how they communicate with their tribe."

"They're a ways off," Baeron said, though he didn't lower his arrow.

"They're not on the hunt right now. They sound different when they do. But be cautious, and keep a keen eye out for any movement in the woods. Don't be afraid to point out anything that looks suspicious," Roth said. "Try to make as little noise as possible."

The string of horses began to move again, although William noticed flecks of white, foamy sweat forming on his horse's shoulders and neck. It snorted, tossing its head more, the small pointed ears swiveling and always in motion. Baeron and Jo relaxed their bowstrings and lowered their aim slightly, but kept their arrows nocked.

The strain of the hard trail and the threat of bzoars wore everyone's nerves thin, but there was no arguing among the group as they all remained silent. The road was too steep and the horses too tired for them to move any faster than they did, and William watched the encroaching spread of evening from the east with a wary eye. He heard the bzoar's jabbering cries off and on throughout the afternoon, though it was hard to tell if they were any closer or not.

William glanced over his shoulder, and saw Tyzel had a battle axe ready in his hand, although it rested in a casual manner against his leg. He twisted back around in the saddle, and started to recite the spells he had been learning before the trip, practicing at drawing forth the energy. He stopped before the spell completed, and allowed the built-up energy to bleed off. He was told that it was similar to lifting heavy things to get physically stronger, and the exercise kept his mind off his nerves and on something he could use for defense.

The woods grew darker as evening arrived, and William anxiously waited for signs of a settlement up ahead so they could take shelter. Another jabbering shriek broke the quiet, and gooseflesh raised on his arms. That voice had been definitely closer.

While he looked around for signs of either danger or sanctuary, Baeron moved his arms enough for William to notice that Anna seemed to be wiping at her face a great deal. He caught himself before he could say her name, wanting her to look back at him, to see if she was crying, and say something to make her stop and feel better if she was. Instead, he tried to will her to look back, staring hard at the back of her head.

Anna did not seem to notice, but Baeron did, and looked behind him at William for a moment. Then Roth turned around a slight bit in his saddle, and looked at Anna briefly before putting his attention back on the woods. William bit back a noise of frustration at the apparent awareness of Anna's distress, and no one seemed to do anything to stop it.

He was so focused on Anna that the next shriek made him jump, almost causing his horse to bolt. There was another shriek, closer, the sound seeming to echo off the dark trees, and then further away, there was a howl that made his blood turn to slush.

William could feel his horse trembling underneath him, from either fatigue or fear but likely both. The white foam of sweat lathered on its neck seemed to glow in the dark when he wasn't looking at it, and faded away to obscurity when he tried to focus. Then the horse seemed to perk up and find a new burst of energy, and they all broke into a slow trot. The ground was not as steep as it had been, although it was still far from level.

Move quickly. Roth's voice in his mind startled him, he'd forgotten about the dragon's telepathy. Then he saw thin slats of dim light coming from shuttered windows. The buildings were smaller than he expected, after the last village, and while there were a number of dragon-sized buildings, he saw just as many, if not more, sized down for an elf.

Roth dismounted and everyone else followed suit, and Jo's horse reared a bit when another howl echoed through the woods. William staggered on shaky legs, leaning against his horse's sweaty shoulder for balance. The only noise was the shuffling of feet and the agitated snorting from the scared horses. Someone grabbed his arm, and William stumbled a bit as Tayani pulled him over to Anna, and then escorted the two of them to a doorway. She tried the latch then knocked hard, and William watched the others hurry to get the horses into a building across the road.

The door next to him opened, and a green-eyed older man eyed them suspiciously. "Get in," he said, looking past them to the others. "How many in your party?"

"Eight more," Tayani said. "Have you room?"

"Barely," the old man said as they passed. He kept the door open and watched, and William looked around, realizing they were in the tavern room of an inn. Several others were present, somber and grim-faced, watching in silent curiosity.

Just a bit of writing

Something was going on. Tyzel had barged in without knocking and located everyone before dragging a chair over to the door and settling in. But he insisted nothing was wrong, that Roth merely wanted him to pull some guard duty. William wasn't buying it. Not completely. James and Anna were in agreement, which did nothing for the latter's nerves.

"Tyzel, what is happening out there?" William asked for the umpteenth time.

The dragon shot him a dry look. "Isn't the definition of insanity doing the same thing over and expecting a different result?"

William sighed. "But I know you're hiding something. We all know you are. For the last time, what's going on?"

"I somehow doubt that's actually the last time," Tyzel said, watching him. "All I know is, Roth told me to get in here and watch you three. If there's something going on, he'll take care of it. So there's nothing to worry about. Therefore, nothing is wrong."

Posted via Blogaway

Resources for NaNoWriMo

This is a collection of writing tools and resources I've used this year for NaNoWriMo

Scrivener: http://literatureandlatte.com/

Zim Wiki: http://zim-wiki.org/

Map Creator Tutorial: http://calthyechild.deviantart.com/art/Fantasy-Map-TutorialxResources-258559867

Chaotic Shiny Generators: http://chaoticshiny.com/

Fantasy Name Generators: http://fantasynamegenerators.com/

Animal Groups: http://www.thealmightyguru.com/Pointless/AnimalGroups.html

Twitter: https://twitter.com/VictoryOverBC/status/529768543412568064

Doll Divine: http://www.dolldivine.com/hobbit-and-lotr-dress-up-game.php

SFWA Fantasy Worldbuilding Questions: http://www.sfwa.org/2009/08/fantasy-worldbuilding-questions/



Happy worldbuilding!

A Brief Introduction of Characters

Today, I'm posting a series of images, brief blurb cards for a hand-picked selection of characters, mostly main characters, but a few have important supporting roles. All character images were created using Azalea's Lord of the Rings Scene Maker from Doll Divine.

William was jolted awake by the carriage coming to an abrupt stop. He could hear nervous snorting and restless hooves, and the coachman's steadying voice. Beside him, Anna's fingers sought out his hand, gripping it tightly, and with eyes long-adjusted to the dim light, he could just barely make out James moving off the bench to retrieve the weapons stored below. Steel glinted dully in the meager light. A clatter of hooves came quickly up the road beside him, and William's fingers itched to draw back the leather flap and look outside.

"Stay here," he heard Roth tell the coachman. "We're not alone in these woods."

"Aye, sir."

For what seemed to be an eternity, it was quiet and still, save for the nervous snuffling of the horses, and the creak of the trees and carriage. Then from out to their left came a garbled scream that made the hair on the back of William's neck prickle. There was the ringing sound of steel striking steel, and low voices he couldn't quite understand. Brilliant light flashed around the edges of the window coverings as a spell was cast, followed immediately by the sound of wood shattering and the screaming groan of a trunk buckling, toppling through the branches of its neighbors, and the grating sound of bark on bark as it never quite hit the ground. The carriage lurched as the horses shied, and it felt as though the coachman was barely able to rein them in. He heard a terrified whinny coming from behind from the horse tied up behind the carriage, and the ring of its hooves striking the wooden walls as it reared.

Anna let go of his hand and he realized too late her intention, as she did what they all wanted to do, and peek out beyond the covering to see what was unfolding, to give an image to the frightful noises they heard.

"Anna, stop!" he hissed, moving up beside her. But he couldn't make her lower the curtain, for he too was intent on looking outside. James looked out the other one, and they watched as Roth, still on horseback and expertly handling the mount and a wicked looking sword, faced off with three men. Only one was on a horse, two were on foot and William couldn't tell if that was by design or if they had been unseated at an earlier point.

"The man on horseback is a mage," James whispered. "I've seen him before."

One of the men on foot lunged at Roth, slashing out with a jagged, curved blade that Roth parried while backing the horse away from it. That had the intended effect of forcing him away from the carriage, and the other man on foot bolted for it. As he grasped the handle, his eyes met William's, and a dark grin crept over the man's face.

Then Roth shouted, an arcane word in a guttural language he didn't know, and the man convulsed, frothy blood appearing from his mouth as he collapsed.

"So it is you," the mage said. "What manner of treasure lies within that carriage, I wonder."

"Back away, Mileil," Roth ordered. "You now know it is I, so you must know what I am capable of doing."

"So do you, Ashlor. And you can only do so much without sending the horses into a stampede of terror, which would jeopardize what's in there." He smiled. "I have no such concerns, however." He held up his hand, and a red glow quickly formed with a rushing noise of wind.

James swore and dove at them, although William wasn't certain how he hoped to protect them from the incoming fireball as it enveloped the carriage. He felt the hot rush of air, then nothing. The roaring flames suddenly dissipated, and the carriage lurched. He heard Roth shout a command he didn't catch, and then they were flying down the road, away from the fight.

And so begins November

Blogger is on West Coast time. When a post would be published at midnight, in reality, it was already 2 in the morning where I was.

It's 2am in Nebraska. Right now, I'm probably getting home. From midnight onward, I was writing at the Perkins on O Street, kicking off November.

It's National Novel Writing Month, or as it's more commonly known as, NaNoWriMo. The goal is to write a novel, 50k words or more, in 30 days. It's an exercise in turning off the inner editor, to hang up the hang-ups over whether or not that's the right word, obsessively editing what was written and pacing back and forth over the same ground without making any real progress toward the end. The editing, the polishing and proofing and ruthless cutting, that comes after the meat of the novel is produced. NaNoWriMo produces the meat. If you choose to cut it into something marketable, it's up to you.

NaNoWriMo has produced novels which, after polishing and cutting, went on to be published. NaNoWriMo has spawned ideas from the monthly projects, a tangent thread to follow, which in turn produces a novel fit for publication.

It's not a formula that works for everyone. Some people flounder instead of fly in the unbound freedom of it all. Not every novel, even if cut and polished, will be fit for publication. Very few novels actually face the wrath of an editing pen. It's a month of nonsense, a lesson in powering through writer's blocks, training in a habit of writing a little bit every single day.

All you need to stay on the goal is 1667 words a day. That will put you at 50,000 words by November 30th.

There's a novel idea I've been wanting to do for a while. The core elements, the basic plot. But I hadn't found quite the right setting, the perfect stage to make the characters shine. In 2013, I think I might have solved that problem.

In November 2013, I also received my breast cancer diagnosis. I was ahead of the projected word count, I was turning out easily 2,000 to 3,000 words a day. But the diagnosis derailed me. Hard.

I did some more writing in the spring, but not very much. I'd lost the motivation for fiction writing. My energy went instead into this blog, into a memoir which is still far from being where I can give it a final period.

I knew November would come around again. They changed the rules, a work in progress was now allowed as a novel entry, provided we started counting the word count at zero on November first, and only factored in the words we wrote through the month of November.

I'm picking the novel back up. It only has 30,000 words to it. A little more than that, actually, but not by much. I want to find my creative drive again. I want to get this story told, about the daughter of a necromancer, the science-minded son of a mage, a shadow dragon and his family.

If I can do this, if I can finish this novel without falling behind the curve (some allowance will be made over Thanksgiving as we're hosting it this year) then I will allow myself something else: the attempt to get into nursing school. If I can't keep up the energy and drive to stay ahead of the daily word count, to finish this novel, then I can't keep up with the demands of nursing school. If I want to go, I'll get this done.

So take a break from a month-long parade of anti-pink, and expect updates to be more sparse this month. What does come across this blog will very likely pertain to writing woes.

And in case you're a fellow NaNo'er, my pen name on the boards is Zanne Chaos.

October 31: And Elsewhere on the Web

My story ran in other blogs as well this year.

First, there was Young Survival Coalition, which ran my story on their social media sites on October 13th, which is Metastatic Breast Cancer Awareness Day.

Metastatic From the Start, featured on METAvivor's blog

I was featured on Telling Knots, in a two-part entry: Part I and Part II


* * *

There were a number of good blog entries elsewhere on the web this month too.

Think Before You Pink

Pushing Up Daisies

Let's Stop 'Dumbing Down' Breast Cancer Awareness Campaigns

When TODAY Said I Was 'Not Bald Enough' 

Why some women with breast cancer dread October

Attack of the Pinktober Sharks

A Day in the Life of a Stage IV Metastatic Breast Cancer Patient

Project Metastatic Breast Cancer

The Problem with National Breast Cancer Awareness Month  

Journeying Beyond Breast Cancer - the MBC Edition

Living with Stage 4: The breast cancer no one understands


Having breast cancer means being ‘aware’ every day, not just in October 

October 31: A Day Of Thanks

Thank you for spending October with me. As the Breast Cancer Awareness Month comes to a close, so does this run of Pinktober postings of Metastatic Advocacy. I am still an Advocate, and I will still post about Metastatic issues, but this month was a special project. As October ends and we're about to enter November, which holds the American holiday of Thanksgiving, I'd like to give thanks to certain people.

Thank you, to my readers, who are helping me make this blog into something that inspires and motivates me.

Thank you to my parents. Dad and Mom, I wouldn't be where I am without your love and support, both emotional and financial. Thank you for everything you've selflessly done for me. I love you.

Jennifer & Susanne.
Photo taken by Marla Austin Photography

Thank you to Jen, the love of my life. You are brilliant and amazing, and a bright source of joy to me. I count myself blessed every day that I have your love. Thank you for always standing by me, for supporting me, for taking care of me when I need it. You are my darling, my everything, my forever, and my wife. I love you now and always.

Thank you to Dr. Steven Dunder, my oncologist. You have shown me the patience of Job when I was still blinded from all the pinkwashing and in denial about my diagnosis, and you have proven to be good to your word, fighting this disease alongside me with as much passion and determination as I am. It was chance that I ended up with you for my oncologist, but a very lucky chance. You're a solid partner in this battle and I'm grateful for everything you've done.

Thank you to the nurses and staff at the Southeast Nebraska Cancer Center. You all actually succeeded in making me feel at home and welcome, in a cancer center of all places, with being recognized and called by name when I approach the reception desk, to the phlebotomists and their patience with my sometimes-stubborn port, to the radiology techs who give me my CT scans and plenty of sympathy when the contrast injection makes me sick, to the nurses in the exam area and in infusion who are always ready to answer questions and talk a little bit about life in general, seeing each and every one of us as a human being, and not just a patient. Thank you for all that you do.

Thank you to the "midlevel providers" at SNCC. You guys are top-level providers in my opinion. The care and treatment you give us is above and beyond excellent. Thank you for taking care of me.

Thank you to Bronson Riley, for being such a wonderful Genetic Counselor. You have patience and passion and a remarkable ability to explain genetics to the rest of us. Thank you for walking me through the process of getting tested for the BRCA mutation.

Thank you to Catherine Verplank, my oncology nurse navigator. You are a pleasure to work with and are always just an email away if I need you. Thank you for all that you do.

Thank you to my friends, old and dear, who have stood by me as the news of my diagnosis broke, and offered all the support you could. Thank you for being there, and for still being here as my friend. Thank you for crying with me, for laughing with me, for helping me come up with enough posts to fill this month, and for being just generally awesome.

Thank you to my new friends, my sisters and brothers united against this horrible beast, for giving me a safe space to vent and an understanding ear to listen, letting me know I'm not alone in feeling the way I do. Thank you for your support and encouragement, and for the inspiration you give me.

October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

October 29: Dumb Stuff People Say to People With Metastatic Breast Cancer

Today, I thought I'd share one of my favorite videos. It's a collection of dumb and broken shit people have said to people with Metastatic Breast Cancer. You might recognize some of them from the Bingo game card featured on October 8th. Some are just pinkwashed ignorance, while others are jaw-droppingly callous.

One of them that irks me the most is the implication that if we have metastatic breast cancer, then we must not have been taking good care of ourselves. We must not have been exercising enough, eating the right foods, drinking the right beverages, doing the right thing.

Have you heard yet about the Bald Ballerina?

At age 23, Maggie Kudirka, a dancer at Joffrey Ballet School, was diagnosed in June of 2014 with breast cancer. But not just breast cancer. She was diagnosed right out the gate with Metastatic Breast Cancer. And she is a ballerina, and has been since the age of four.

In case you're not fully aware of how much physical training and work goes into being a ballerina, this Under Armour advert highlights what a grueling sport it is. Look at the shape she's in. That's normal for a ballerina. If someone so young and so fit could get metastatic breast cancer, what does that say about the rest of us? It's not our fault.

We might still have our hair. We might "look fine". We might even be able to continue working. But that doesn't make what we have any less serious. We have Stage IV Metastatic Breast Cancer. There is no cure. There is no point where we are "finished" with treatment if we want to continue to live a bit longer. This is as serious as it gets. We might seem fine but we will never BE fine. This is our new reality.

And no, you can't have my flat-screen TV when I die. What is wrong with you?

October 28: Guest Blogger Rachel Boullion Wickman

Guest Blogger Rachel Boullion Wickman is sharing with us the perspective of a young mother living with metastatic breast cancer.

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Being Cancer Mom (she’s like Super Mom, but on the couch)

When I was 32 years old, I became pregnant for the first time. I have always wanted to have kids, but seeing as how I was getting “old” and had been through a divorce a year or so earlier, thought it may never happen. Then I met my husband Chris in 2007, and immediately got pregnant with my son Riley. I was overjoyed! Never did I think I could love someone so much as I did that little munchkin. My joy at being a mother made me long for another child, so when Riley was 9 months old, in January of 2009, I became pregnant again. Things were a little more complicated this time around. I had gestational diabetes, so my go to drug of choice, chocolate, was off limits. I was super tired. I was achy. I attributed all these things to being pregnant again so soon after having a baby, plus the added stress of a 1 year old running around the house.

In July, 2 months before I was due, I found a lump in my breast. Not terribly big, but it was there. I showed my OB/GYN, who examined it manually and declared that it seemed triangular and it was probably a blocked milk duct. She advised me to put hot compresses on it, which I promptly forgot to do. Two months later, my little man Eli was born. I was super stoked, but super exhausted, and had a fairly rampant case of postpartum depression to boot. So when I went for my 6 week checkup after having him, never once did I even think to mention that the lump was still there. And never once did they ask about it.

Fast forward another year (!) to my annual checkup... the lump is still there. The alarmed look on my OB/GYN’s face did nothing to alleviate my anxiety about it. It’s now been a year and a half since the lump presented itself, and it’s begun to grow and cave in my nipple area a bit. They sent me for a mammogram and ultrasound, then a biopsy and PET scan. All showed cancer... EVERYWHERE. My skeleton was riddled with tumors. I was devastated. My thoughts immediately went to my boys, who were 1 and 2 at the time. Would they know their mother at all? Would they remember my laugh, my sense of humor, my fits of anger? Would Chris remarry and the boys think that this “new” mom was their mother, the one who carried them lovingly in her belly for 9 months singing to them? I just couldn’t let that happen. I couldn’t.

Having had the BRCA genetic test done, I found out that I do indeed carry the BRCA 2 mutation. So now not only do I have myself to worry about, but my family as well. In my mind, I just kept thinking, “what have I done?” I decided then to have my breasts and ovaries removed to give myself a fighting chance. I had 16 rounds of chemo to stave off the monster. When I realized that my hair was falling out, we had a head shaving party and let my boys cut my hair off so it seemed like a fun time rather than a scary one.

Stock image. Photo credit www.candygibbs.com

They loved it! To this day they ask if they can do it again (hopefully not, but realistically it’s probable).

We just try to live one day at a time as a family, and take things as they come.

How does this affect the boys you might ask? Well, they’ve never known anything different. They’ve grown up knowing that Mommy goes to the doctor a lot, and sometimes has to have stuff done like surgeries to help the doctors fix her. They know I take my meds every day. They don’t really know what cancer is, per se, but I’ve explained to Riley when he asks that Mom has something inside her that’s messed up, but that it isn’t something he can catch, and we can still hug and give sugars all the time. I’ve learned to appreciate little things that most people take for granted... the first day of Kindergarten, first lost tooth, first “girlfriend”. I’m hoping to see a first date, first dance, weddings, and grandkids, but know realistically that it isn’t likely. As my boys grow up, I try to make life memorable. I am relieved that I’ve lived as long as I have, so I know they’ll have some memory of me now (they’re currently 5 and 6).

 It’s difficult sometimes knowing that I can’t do all the things “normal” moms can do. I can’t run in the yard with them for more than a minute or two without being completely exhausted. I suffer from serious fatigue, so much so that my patience is nil, and I’m known to yell at any given time, completely hurting their feelings. I hate that this is the life they’re living, and hate that they now have to worry if they have daughters that they too will get this shitty disease.

Please let there be a cure soon so this legacy I’ve imposed on them ends.

October 27: Guest Blogger Knot Telling

Guest blogger Knot Telling is sharing with us another perspective of someone else living with metastatic breast cancer. You can follow her journey at her blog, Telling Knots.

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Capital Punishment and Pink Rocks


Condemned prisoners in Japan are not told the date of their execution until the morning of the day itself. According to many experts, this is a contravention of the International Covenant on Civil and Human Rights. The parts of the Covenant that concern us here are Article 7 (“No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”) and Article 10 (“All persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person”). In other words, not telling condemned prisoners when they will be executed until a few hours prior to their death is considered to be inhuman and an affront to human dignity. Torture.

I had an immediate visceral reaction when I first read a 2007 BBC News report about the Japanese system of capital punishment, and I have never forgotten it. Living with MBC is not unlike living under sentence of death and not knowing how long you have until the sentence is carried out. The stress can be a kind of psychological torture.

There are many kinds of physical torture. It’s been reported that regimes such as the Nazis in the 1930s and 40s, the gulag in the Soviet Union and North Korea today used forced meaningless labor as torture, tasks like carrying heavy rocks from one place to another and back again. Sometimes the stress of living with MBC feels like carrying around a load of rocks.

Yes. I sometimes feel as though an arbitrary authority is forcing me to carry large rocks from one place to another. Sometimes my load is reduced and I can breathe more easily, relax my muscles, sleep through the night. At other times, I have the sense that more rocks are being added to my burden.

Save the tatas!
A rock.

Early detection of breast cancer saves lives!
Another rock.

Breast cancer can now be cured!
Another.

If you have a positive attitude you won’t die of cancer!
And another.

Buy this pink teapot/garbage can/mouse pad for breast cancer awareness!
Yet another.

Every October my burden gets so much heavier. Listen:

*Breast cancer is not about breasts. It is a horrible disease that kills both men and women. It is not about saving sex appeal; it’s about saving lives.

*Early detection of breast cancer can mean the treatment is not as difficult, but it is no guarantee that it won’t recur. In fact, about 30% of everyone who has breast cancer—regardless of the stage at diagnosis—will have a recurrence and metastasis.

*There is no cure for breast cancer. None. There is treatment that can lead to remission or an NED (no evidence of disease) condition, but there is no cure. No one knows who will be in that 30%  and who will not. For the unlucky 30% there is no cure. We will have breast cancer until we die, probably of breast cancer and its complications.

*There is no scientific research that shows any relationship between mood or attitude and recovery from cancer. At this point, there is no way to predict with any degree of scientific certainty who will live and who will die. Some cheerful, positive people die. Some miserable, complaining, angry people recover. Some people who have variable moods live and some die. Mood and attitude do not correlate with, let alone influence, recovery.

*Pink merchandise has become a common marketing ploy, especially in October. Much, if not most, of the pink “breast cancer awareness” merchandise that is sold profit manufacturers and vendors and no one else. If you like pink, go ahead and buy it, but if you want to contribute to the fight against breast cancer be under no illusions. Unless you have verified that a reasonable portion of profits goes to a reputable foundation or charity, make your donation directly.

The pink rocks that are added to my burden are just as heavy as the others.

Even if I didn’t have those extra rocks to carry around, the stress of this indefinitely postponed yet certain death sentence is psychological torture. I am in my eleventh year of it, and I am tired.

I am tired of pain and I am tired of the narcotics that treat it. I am tired of having a permanently compromised immune system. I am tired of massive fatigue.

At the same time, I want to live every day that remains to me. It is the frustration at not being able to do that the way I’d prefer that makes me tired and angry. Nevertheless, I have taken steps to have the best quality of life I can. I have made arrangements for people to come and help me with the tasks I can no longer do (housework, garden work, errands in town). I enrolled in a distance learning course. I stopped exams and treatment, other than comfort measures like pain management.

In other words, I found the little power that is left to me in the face of the arbitrary “authority” (fate? genetics? environment?) that condemned me and sentenced me to the forced labor of carrying rocks until the unknown date of my death. I draw on that power as much as I can—some days more, some days less—in order to live as well as I can until MBC causes my death.

October 26: Guest Blogger Jennifer Eisenbart

A journalist for a newspaper in Wisconsin, Jennifer Eisenbart became active in spreading metastatic breast cancer awareness after it had an impact on her own life. Note: This column was originally printed by Southern Lakes Newspapers Oct. 2, 2014. It is reprinted with the permission of SLN, and should not be reprinted further without permission.

Additional note: Zanne is the nickname I go by with my friends. It's short for Susanne, using the Americanized spelling instead of the German spelling.

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      To me, breast cancer isn’t about statistics, or stages, about survival rates, or about October and the readiness of pink-ribbon items.

      For me, breast cancer is about names.

      Judy and Sharon – two friends who helped me through some of the toughest times of my life. Both died of metastatic breast cancer; one this year, the other more than 12 years ago.

      Then there’s my friend Zanne, who I met writing fan fiction and who just got married this past weekend. Earlier this year, she was diagnosed with stage IV breast cancer.

      As she constantly reminds me, in her case at stage IV, there is no cure. She’s fighting the cancer with everything she has, and there’s a good chance she will be around for a long time.

      But there’s also the inevitable fact that the cancer cannot be eradicated, and that sooner or later, it will probably take her life. And the real kick in the pants? It won’t be the breast cancer that kills her then – not technically. It will be cancer that will have spread to her lungs, her lymph nodes, her brain, or even her bone marrow.

      Cancer goes where it can to escape and survive.

      I get behind and support breast cancer awareness in October – and the goals of finding a cure and stopping this disease from taking the lives of people I know. I remain optimistic that, perhaps in my lifetime, we will find a way to take breast cancer from the scary, incomprehensible secret to just another disease.

      In the meantime, though, I want to spread the word about stage IV breast cancer – aka, metastatic breast cancer. According to Metavivor, a site dedicated to women suffering from stage IV breast cancer, here are the facts:

      • Metastatic breast cancer receives approximately 2 percent of the funds raised for research.

      • While only 6 to 10 percent of patients are diagnosed with stage IV breast cancer, 30 percent will eventually progress to stage IV.

      • The primary focus of breast cancer research is prevention and early detection. That does nothing for the women diagnosed with stage IV – either in the beginning or later.

      Metavivor is working hard to address that discrepancy. The organization says it believes that if 30 percent of the women with breast cancer are stage IV, then 30 percent of the funds that are raised should go to stage IV research.

      It’s not a bad thought. Breast cancer in and of itself is a devastating disease. To free yourself of the disease and to have it reoccur – which means it has automatically progressed to stage IV – or to be diagnosed in that stage makes it worse. To know that so little effort is being put into stage IV research is infuriating.

      I know what my friend Judy went through the final days of her life. I know, because I was there. I watched as she struggled to breathe, finally being put on a bi-pap machine and being placed on numerous drugs to stabilize her condition.

      Those drugs were discontinued, the oxygen switched to a nasal cannula the morning she died. The reason was because there was no hope. The cancer had invaded her bones – destroyed her bone marrow. The reason she had so much trouble breathing was because her body wasn’t producing the red blood cells she so desperately needed.

      Would Judy’s end have been any different with more research – with more funds put toward stopping cancer that has reached stage IV? I don’t know. Breast cancer isn’t alone in its stage IV challenge. Any form of cancer that reaches that point is difficult, if not impossible, to cure.

      But increasing survival rates? Extending survival time? Eventually figuring out how to get rid of Stage IV cancer or keep it from reaching that stage? I think those are laudable goals. And I hope, for everyone who has reached that point, that cancer research can take that step.

October 25: Guest Blogger Micchi

A dear friend of mine, Micchi's life has been touched by metastatic breast cancer several times over. I asked them to share their thoughts and experiences. This is what they wrote.

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When my best friend was diagnosed with breast cancer, it was a kick to the gut but a manageable one. Yes, we were all blinded by the pinkwashing, and convinced that she would beat this and be cancer-free before we really knew what was happening.

We learned pretty quickly that that was likely not an option, when the staging and the reveal that the cancer had spread came down. This was a terminal diagnosis. It might be next year, it might be next decade, but eventually, this would be her downfall.

I was lucky. I'd been dealing with my mother's slow progression of illness for several years by this point. I already knew that, with a terminal illness, one bad day could turn into a month of bad days pretty easily. I'd learned that even if that cold was easily treated, one misstep could mean pneumonia and a hospital stay.

It's terrifying, and it's heartbreaking.

On top of that, for someone affected by metastatic breast cancer, pinkwashing has done no favors. Any time I talk about my friend, there's the quiet, worried "Oh, what kind of cancer does she have? Breast cancer? Oh, but they're made so many strides on breast cancer!"

...Yeah, no, not really.

Metastatic breast cancer patients face a unique hurdle: erasure. Their fight, their struggle, their pain is constantly erased by races for The Cure! and how beatable breast cancer is!

And that erasure needs to stop.

October 24: Guest Blogger Jennifer Kraus-Dahlgren - Part 2

See October 23rd for Part 1 of Jennifer's guest post on metastatic breast cancer, and what it's like as the partner and caretaker of someone living with MBC.

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I remember that she started receiving care packages very shortly after that. Friends and family of hers stepped up and sent her little things, a card, some money, ginger-based products to stave off the normal nausea that'd come with chemo. Little things to brighten her day. I was almost never sent anything. I was rarely even mentioned as being kept in thoughts, prayers, hopes. Everything was about her. And it should've been, as far as I was concerned. She was the one that was ill. She was the one that needed to fight. She was the one that was loved.

But I started to feel forgotten. I was the one that'd help her get to a trash can or the toilet in time when the nausea hit. I was going to be the one carrying things for her, doing shopping and laundry largely by myself as chemo progressed and she started losing her strength. I was the one that'd have to go through her belongings and decide what to let go of, as if I were letting go of parts of her. I was the one that was going to stand at that grave as the grieving widow.

I never begrudged her the attention. She needed it. She was the one that was ill. And she never forgot me. She held me every day. She reassured me every time she saw me crying that she would beat this, that she wasn't leaving me. But she was the only one. Nobody else even talked to me about it. No one asked how I was doing, if maybe I needed a hug, or a day out to get away from the appointments and the material things I'd have to sort through, the things that I looked at every day and thought who they should go to.

I was braced to be alone, and in so many ways, I was already alone.

My reality had changed, and I didn't want to live there anymore. I desperately wished I could close my eyes, wiggle my nose, and tap my heels together and everything would change back to how they were. Back to her being able to work, to a time when our excursions out of the apartment could be for something silly, before the doctor appointments and chemo took over. Suddenly, leaving the apartment meant leaving my little bubble of denial, it meant looking Death in the face and begging her not to take the woman I loved. Begging for her to be spared. For more time.

I keep hearing stories of people who leave their wives and girlfriends after a Stage IV diagnosis. Leaving when that woman needed them the most. In some ways, I can't blame them. It's terrifying, to watch someone you love slowly die. Being a caretaker can be one of the most thankless jobs in the world. The only one who really seems to get that is the patient herself. It hurts when the people around you ask your wife "how are you doing?" but don't even give a nod to your own pain. I can't say that I blame someone for walking out on that.

But I couldn't personally fathom it. I couldn't imagine Susanne having to go through those treatments alone, having to someday lie in a bed and pass away without the woman she loved holding her hand. I knew what it was like to be alone when you needed someone the most, I loved Susanne too much to be able to do that to her. To even let it cross my mind.

But being a caretaker is a thankless job. Nobody else seems to see how hard the caretaker has it. Nobody but those of us who have been there know what it's like to watch someone die. To watch their time slip away, knowing that there will never, ever be enough time left.

That was the reality I had stepped into with that phone call, late in November. It was a reality I hated. All the dreams we had, the ones we'd been able to continue to hang onto, even after our lives had already been irreversibly changed, they were gone. Time was working against us, suddenly. That black, ugly void where nothing makes sense and everything hurts yanked the rug out from under our feet. That was my new reality.

Just a month before had been Pinktober, with its messages of hope, of cures. Like so many other people, it'd fooled me into thinking that breast cancer was beatable, that it didn't kill people. They told us to hope. They told us to pray, they told us to feel bad when we didn't detect it early, as if it was the patient's fault that her cancer hadn't been diagnosed until too late.

Our dreams were gone. Her career, her chance at becoming a nurse, everything. It was all gone. All that was left for us was doctors and illnesses and an inevitable separation. Behind us, all those pasts, all those what ifs, shoulda coulda wouldas, they were gone. They were torn. They were vandalized and ripped and torn and taken from us and left behind as nothing but a future that we could no longer look for.

My reality had changed. And all I could think that it was my fault. If I'd only gotten her in earlier, if I'd only outstubborned her, maybe we could've caught it before it became Stage IV, could've beaten it. Could've had that hope. If I lost her, I had nobody to blame but myself. That if she died, it was my fault. Not getting her in early had been me giving her a death sentence.

One day, I will be looking up at the urn on my shelf and have to apologize because I'd failed her in the one thing I was supposed to do. One day, I'll be saying "I miss you, I love you, please come back." One day, my own life will be over, and I'll be left behind again.

But I try not to think of that day. It'll come, in the meantime, the best thing I can do is hold onto each and every precious second, to keep taking care of her, to keep loving her. That's all anyone can ever do. Hold on and love.

Hold on and love.

October 23: Guest Blogger Jennifer Kraus-Dahlgren - Part 1

You, gentle readers, have met Jennifer before, as Jen in my previous entries. I asked my wife to pen a guest post on metastatic breast cancer, and what it's like to be the caretaker and partner of someone living with MBC.

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The Life of a Caretaker

By the cold and religious we were taken in hand,
Shown how to feel good and told to feel bad.
Tongue-tied and terrified we learned how to pray.
Now our feelings run deep and cold as the clay.
And strung out behind us, the banners and flags,
Of our possible pasts lie in tatters and rags.
-Pink Floyd

I remember the moment we received the news very clearly. I can't remember what the date was, not even what day of the week it was, beyond not a weekend. Susanne knows, but I don't. It was November, the stores already had Christmas decorations up and cards and gifts and music was playing. The season of giving. The season of brightness and light and for some, a holy season. A season of gifts.

I'd known, the first time I felt that lump in her breast, that it was cancer. Something deep inside me knew. She insisted it was a cyst, she'd had one exactly like it on the other side, and it'd burst and drained, just like she expected this one to. I knew better. But I let her prove me wrong. I dismissed my concerns as paranoia. I grew up in a family full of life-threatening and/or chronic illnesses, I was always ready to expect the worst when something was not right with someone I loved.

But she showed no other symptoms of cancer, and she was too young. So I let her confidence keep me floating along.

But I knew.

I finally got her to agree to go see the gynecologist I'd been seeing for my birth control for a basic evaluation. The place was mostly donation-run, so we could afford it. They referred her to a doctor here in town to have it biopsied, or drained, if it was a cyst, as Susanne thought. I sat there in the procedure room with Susanne and the doctor, looking away because I get squeamish about medical procedures, but I was there. I heard the doctor announce that it was solid, not a cyst.

The word cancer loomed in front of me. I knew. It was there for two years, and I knew every day and night of those two years. But there was the chance that it wasn't malignant, maybe just fibrosis, nothing to worry about, something that could be removed and life would go on as normal.

It was a few days before we heard the news. I think I had to call the doctor, instead of getting a call from her. I'd grown more and more nervous as we waited. That word kept whispering in my ear. Cancer. Cancer, it said.

Photo by Marla Austin Photography

Finally, we found out. It was cancer. Any shred of hope I'd had disappeared. It felt like I stopped breathing, like my heart stopped beating in my chest and my lungs couldn't take in air and I wanted to die. Susanne was worried, staring at me for the news. I told her. She panicked. She started crying. And all I could do was numbly listen to the doctor. She gave us a referral to an oncologist here in town. There'd be tests. Medicines. Possibly surgeries.

My reality had suddenly changed. And I hated it.

I grabbed onto one tiny thread of hope at that point. After all, everyone knows that breast cancer is beatable. There's hope. Hope For The Cure, Pinktober said. It was everywhere, everyone knew that it was beatable. As long as she hadn't advanced to mets, we could shrink and remove the tumor, and she'd be healthy again, even if she had to wear a padded bra to keep from looking lopsided because one breast was half-missing.

There were days of tests. She had a mammogram to make sure it wasn't in the other breast. A PET scan to look for any signs of mets. A surgery for her port for the chemo infusions, and a liver biopsy. There was something on the PET scan that we weren't sure what it was.

I knew. She didn't just have cancer. She had mets. It was Stage IV.

My soulmate, the woman who'd stood by me through so much, through my own illnesses, through family problems and money problems and any other problem life could possibly send my way. She was there with me.

I tried to hold my breath after we found out there was something on the liver. I tried to pretend that if I just held still enough, if we stood there and counted our heartbeats until the danger had passed, that it wouldn't come for us. That it wasn't mets. That it wasn't the deadly stage.

But that voice, that part of me that knew, I knew this, too. She was dying. I was going to be left behind. I was going to be staring at another grave, like too many times before in my life, and I'd be talking to the wind instead of her.

Her oncologist confirmed it. It was Stage IV. He stayed positive, didn't mention that the average lifespan after Stage IV diagnosis was three to five years. He pointed out how many women with Stage IV went on to live even decades after their diagnosis. Susanne held onto that. I tried. I'd never been able to see living without her, not until we were little old ladies, living in an assisted living home and wearing goofy t-shirts and being annoying to the other residents and people working there with our random outbursts of laughter over nerdy, silly things that everyone around us would wonder what the hell we were talking about.

Suddenly, I was facing the idea that I'd lose her before I even hit forty. That I'd be a widow before we even got to marry. Someone else was leaving me. I was being left alone again, and I honestly didn't know what I would do without her. I couldn't see a future anymore. It was gone. I'd lost my dreams and my life already due to a psychiatric illness that took me away from the possibility of work, of a career, of school, but I could deal with that, as long as I had Susanne.

Now, nothing was there. It was just me. Just me and an elderly cat with Stage I kidney failure. That's all that was left.

Every day, I cried. I panicked. I made plans for what to do when the inevitable happened. I started trying to figure out what of hers to give away, what to send to charity, what to keep. I started looking at her wanting to say "I'll miss you" instead of "I love you." I did my best to keep that thought to myself. I was her main support, I was the shoulder to cry on, I wasn't the person to be doing the crying.

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Tune in tomorrow to read the second part of Jen's powerful essay, The Life of a Caretaker.

October 22: Interview with METAvivor's Lori Marx-Rubiner

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

When were you first diagnosed with Breast Cancer?

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

When were you diagnosed with Metastatic Breast Cancer?

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

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

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

How did you first learn about METAvivor?

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

When did you get involved working with METAvivor?

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

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

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

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

That you die from it.

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

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

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

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

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

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

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



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

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

Watch her interview on Lifetime's The Balancing Act.