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."

October 7: My Own Milestones

Yesterday, I spoke of Milestones, from the point of view of a mother, which many women are. Not all women are, though. I'm one of them. I have no children and have never desired a child. I live my life with the thought that I would rather regret not having children than regret having one. If I ever found myself feeling like that had left a gaping emptiness in my life, I could become a Big Sister, I could foster, I could do many things to make a difference to the children who were already in existence.

But I don't have the normal milestones that most women in my position are facing. I don't have children to see off to school. I enjoy seeing my friends' children grow and experience new things with each passing year, but they're not my milestones to observe. If I don't make it to see my best friend's youngest start high school, that won't be what's going through my mind as the time comes.

Today, I have a post with a lighter tone. My milestones are pop culture. They are things I enjoy and I fully intend to be around long enough to experience them. They are the targets I aim for.

One of the first on the list is Thor 3. Rumored to be released in the year 2018, it's bringing back Tom Hiddleston as Loki, and we find out what exactly was going on at the end of Thor 2: The Dark World. I've been a Marvel fangirl for years, since the old, old days of the Outside The Lines mailing list and the CFAN website run by the late Kielle. The MCU is entertaining and enthralling, and I want to be able to make it to Thor 3, or even Avengers 3.

But that's still not too far off. It's only four more years, after all. I want more than that. I want to live to a ripe old age and thrive, keeping this beast at bay for years to come. I need another milestone. I have two for the year 2025, 11 years from now.

The first of the two is a really big if. Mars One. Not if I live that long, but rather, if the project doesn't tank, if the project timeline goes as planned, if there aren't any unexpected delays, then we'll be seeing the landing of the first humans on Mars. I want to see this for myself. When I was little, Atari was state of the art, and phones came from Ma Bell and in fleshy beige or avocado green, and had the little rotary dial. In forty years, we've come from that to a feasible, workable plan to put human beings on another planet. We've been to the moon, but no further than that. To see a different sky, to stand on a different planet, there are people selected for this right now, and set to begin training for this mission next year.

The second of the two is far more local. On July 4th, 2025, the world's largest time capsule will be opened, and it's located in Seward, Nebraska. I lived there for a few years, and it's only a 30 minute drive away. Attending it should be interesting, provided the crowd doesn't make me want to scream and go somewhere far away from that many people. If it does, I'm sure there'll be a display up somewhere with the items recovered, and I can just go to that.

That's all I've got for now, but I'm sure more milestones will crop up as time goes on. I'm really hoping that the Mars One project stays solid and on its projected timeline. That's just amazing and brilliant.

October 6: Milestones

Mothers often think about seeing their child's "firsts" - First day of first grade, prom, graduation, wedding. For many, these are contemplated with the outlook that it's a given they'll be there.

Many young women with metastatic disease are mothers. For them, these milestones come with an extra prayer. They'd like to live long enough to see them. To see their young child start their first day of first grade, starting high school, going to a prom, off to college, getting married. For many of them, the reality is that they won't be able to live to see these things.

The ones they do experience, they're all the more precious for it.

What would it be like to have to live your life knowing that you probably won't survive long enough to see your little child start high school, let alone graduate or go to college? Knowing that this beast will rob you of these experiences, these milestones?

That's what it's like to live with Metastatic Breast Cancer. Even if you're stable now, each holiday, each birthday, it might be the last.

I recall one woman in a Facebook group for metastatic breast cancer. She went on a camping holiday with her husband and children to build memories for them over Mother's Day weekend, and during this time, she posts to the group with reports of feeling worse, with her eyes turning yellow. A week later, we learned that we lost her. That's how quickly things can change.

Each moment is precious, borrowed against the threat of the beast. We live knowing full well that we're dying.

It's not romantic. It's not Hollywood. It's not something beautiful and poignant and touching. It's rough and it's painful and it's unfair.

We are living on borrowed time, and there's too many milestones to live. Too many that are being robbed from us for lack of treatment. Effective treatment that can keep this beast at bay longer. Cancer is a living thing, it grows, and it adapts. Treatments which worked for years can suddenly become no longer effective, and there is progression. In the end, there is always progression. And there's not enough research for more treatments, more options when we run out of what's currently at hand. We turn to clinical trials and pray we don't get a placebo, pray that it works, in an effort to make it to the next milestone.

That's the reality of metastatic breast cancer.

Wedding Photos

Wish Upon a Wedding has released some of the official pictures from Marla Austin Photography today. I want to share a few of them with all of you.

Tis Me! And I love my wig.

The love of my life.

From L to R: Rebecca F., me, Shari (officiant), Jen, Sara L.

First kiss!

From James Avery Jewelers. In Hebrew it reads "Where you go I will go from the Book of Ruth

Jen's bouquet has green carnations, mine has pink. Mine was also in METAvivor colors.

Wedding: A Recap

As I write this, I'm snacking on dipped pretzels provided by Rocky Mountain Chocolate Factory as wedding favors. They're good.

It's Monday night. well, technically, Tuesday morning. Twenty-four hours ago, I was collapsed exhausted in a very comfortable bed at the Hampton Inn, recovering from a day which, for me, began at four in the morning. I've been waking up at that time for the last week and a half to take my antibiotic, which has me accustomed to the routine. It was only two hours before the alarm would go off and I couldn't fall back asleep, so I decided the hell with it and got up.

We left shortly before 8:30 to stop to get a newspaper which had an article about us in it, and some drinks for the trip, then picked up a friend on the way out of town. We went to the Hampton Inn for early check-in, meeting the wedding planner, and got our first glimpse of where we'd spend the night. We were then given the jewelry donated by Rhylan Lang. One necklace was a pendant, the other was a strand of three. They went beautifully with our dresses. The pendant matched the gemwork on my dress's bodice, and the three-strand one matched the drape of Jen's gown.

Then we went to the reception hall and got a preview of that, and boarded the party bus for Council Bluffs. At the EQ School of Hair Design, the bridesmaids all got dressed while the instructor, Margi, herself a two-time breast cancer survivor, helped me with my wig and styled in the veil and tiara. Christine from Blush Makeup Artistry painted up my face. I was airbrushed, such a weird sensation, and I wore false eyelashes for the first time.

Christine, myself, and Margi

The bridesmaids all had their hair and makeup done after, while the rest of the party bus riders relaxed in the salon with snack sacks my mother put together and brought to the salon for everyone.

The wedding party plus Kim at the salon

After that was done, we all boarded the bus again and headed to Willow Creek Glass Chapel. We got lost once and had to turn around, and it was well off the beaten path on gravel roads which kicked up a ton of dust. Because some windows were open due to the warm temperatures, everyone at the back of the bus got covered in dust.

Jen and I got changed into our gowns after we got there, and donned the jewelry and posed for pictures. While standing around and trying to walk in them, my pumps rubbed the sides of my feet raw so I ended up abandoning them for the actual ceremony, especially since I had to go up and down several steps without a railing, which isn't easy for me to do.

Aside from the shoes, the ceremony went beautifully. Once we were done and out, we boarded the bus again for a much longer trip, without any stops this time, for the reception hall.

From L to R: Caity, Micchi, Rebecca F., me, Jen, Sara, Amanda, Rebecca H.

 Dinner was excellent and for the first time in my life I had a potato salad I liked. Sweet potato salad. Then we cut the cake.

After the cake came the first dance. The song we picked dropped the F-bomb a few times, but it was so perfectly us we had to use it. Here's To Us by Halestorm.

We danced the Time Warp, we were given a bottle of homemade mead from a friend, everything went perfectly. There were a few minor bumps here and there, we were devoured by mosquitoes during the photo shoots, and I have not been that physically active in a long time and I felt like a giant bruise by the end of the night, but it was beautiful and perfect and we loved it.

Cake was chocolate, the cupcakes were raspberry

Wedding Day!

This is scheduled to be posted automatically during the time of the wedding. I want to thank everyone for making this day possible.

First, thanks goes to Wish Upon A Wedding, because without them, none of this would be happening.

To Cindy Lange-Kubick of the Lincoln Journal-Star, for running a feature in today's paper to highlight Wish Upon A Wedding and the awesome people who made everything happen.

To Tina Schneckloth, my wedding planner from Kimera Wedding & Events, for all of her hard work getting everything coordinated and on board with this event. She's the reason everything is going so smoothly. And an extra thanks to Jen from Cherry On Top Events for helping Tina set everything up today and your assistance in seeing that it all runs like clockwork.

To the Willow Creek Glass Chapel and the Millard Plaza Ballroom for hosting the Ceremony and Reception, respectively.

To Shari from I Choose You Ceremonies for officiating the wedding, and writing up a beautiful ceremony for this special day.

To Andrea Erickson, for lending your powerful voice to a performance of Shania Twain's "From This Moment On" during the processional.

By Marla Austin Photography

To Scott from A Joyful Rose DJ Service for providing the music throughout the wedding and the reception, and having even a few obscure songs we wanted.

To Marla Austin from Marla Austin Photography for the beautiful pictures taken for the engagement and the wedding itself.

To Cali from A Sound Impression for the wonderful engagement video and the videography of the wedding and reception.

To Blush Makeup Artistry and the EQ School of Hair Design for doing the entire wedding party's makeup and hair, and working with my wig so I can wear my veil.

To Rhylan Lang for the stunning bridal jewelry gifted to the two of us to help make the day even more special (and sparkly!)

To Corum's Flowers and Gifts and Country Elegance for the flowers and decorations for the chapel and reception hall.

To the KROC Center Catering for a delicious meal, and to The Cake Gallery for a gorgeous wedding cake. A tasty note to a wonderful day from the both of them.

To M&M Advertising for the beautiful invitations, to Rocky Mountain Chocolate Factory for the wedding favors, and to Memories For Life for the guestbook.

To Jone-Z Party Bus for the transportation to and from the chapel, and finally to the Hampton Inn and Suites for providing a room for Jen and I after the reception so we might have a chance to unwind in private. (We have 3 out of town guests currently staying with us over the week around the wedding)

It's an incredible day and it wouldn't be what it is without the contributions and help from each and every one of you. Thank you from the bottom of our hearts for this, and may the coverage send paying customers your way. That's the gift I have in return for everyone's amazing generosity.