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.

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!

October 18: Conversations With Cancer

Bringing in another question from Facebook today.

I've been on a kick watching House lately, and something Wilson said in an episode really sort of struck me and made me wonder. Paraphrasing here, "Once they find out you've been diagnosed with cancer, EVERY conversation is about cancer." what about reclaiming parts of a normal life? What's been easy to go back to, what's been hard to go back to? - Laura

 I think this is one of the points that divide Stage IV from early-stage cancer. With early-stage cancer, you have a chance at moving into a point of your life where cancer is a thing of the past. For Stage IV, it's always going to be there, and there's never going to be a point in your life that's "after the cancer". That makes it harder to keep the cancer from taking over your life and becoming the focus of every waking moment.

For me, getting back into writing has been hard. I was participating in 2013's NaNoWriMo when we found out, and I was ahead of the projected word count at the time. However, once the news came in, all creative energy was zapped out by the stress. I've done a little bit of creative writing here and there, but not like I used to. My writing energy has been going toward nonfiction, these blog posts and my memoir. Cancer has taken over my writing.

I do have plenty of conversations that don't have cancer as a focus, but it's still there in my mind, an underlying note. It's like any major lifestyle change. In the early days it's a Big Thing that can be overwhelming to think about, but as time goes on, it fades into the background where it's always present but not always noticed.

I focus so much of my energy on cancer because I've found passion in Stage IV Advocacy. The more I learn, the more I realize that there aren't enough voices crying out in the wilderness, we still lack the attention we need to bring in the funding to get the necessary research. It takes energy to maintain passion though, and I don't know how much longer I'll have the energy I need to do this. So I'm focused on getting as much done as I can before I have to take a rest.

I miss my old life. Sometimes I want to go back to the days when I was busily typing away and making word count, before my world turned upside down. I'd like to be able to live a beautiful life of denial sometime, and maybe then I can go back to writing fiction. I can't escape reality right now because my best chance at surviving my reality is advocacy and raising funding for Metastatic research that might benefit me down the line.

Yes, I admit that part of my motivation is entirely selfish. I don't think anyone with metastatic disease is fighting for awareness and research funding simply for other people. If we don't live long enough to see a viable treatment come our way, so be it, and our fellow metsters who survive us might still benefit. But it would be nice to see some results from our hard work, you know? We'd all like to live. There's nothing wrong in that.

My life changed so dramatically, I went from working to not working in order to keep the health insurance I'm on, and then I went from constant treatment to once a month injections. It was difficult to get back into a normal pace for life and find the energy to do things and accomplish things and interact with people for a while. After I finished chemo, I spent well over a month doing little but binging on Hulu and staring off into space. In some ways, my cancer has helped me find a focus to get back into life again by fighting for awareness, and sparked passion in me again.

So I guess that quote holds some truth. Once you have cancer, every conversation is about cancer. It's exhausting though, and I look forward to running some of the heat off this passion so I can take a vacation from cancer.

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.

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

Getting closer to the big day

My tooth extraction yesterday went smoothly. The Tramadol I'm already on, coupled with Tylenol, is doing its job of keeping the post-op pain at bay. It's making me nod off quite a bit though. I normally only take Tramadol before bed to stave off arthritis pain in my lower back. I know it is arthritis and not bone mets because the arthritis was confirmed and diagnosed with X-rays a couple of years prior to the breast cancer diagnosis, and it hasn't changed or moved. The Tramadol also helps with joint pain brought on by the Femara.

It is now exactly 15 days before the wedding. The itinerary for the wedding day has been written up, a fine piece of time management by my wedding planner, Tina. She's following up on a few more things for me, and Jen needs to finish setting the reception music with the DJ, Scott. The cake, the catering, the flowers, the decorations, all that's finalized and will be ready to go. I'm super-grateful to all these people who are volunteering their time, energy, and resources to make this a special day.

The Best Maid, Sara, has put together gift bags for the wedding party. It was her idea. She suggested something, I brought up something else, and it snowballed into a project she's enjoyed doing. She's a rockstar. She's also putting together an in-case-of-anything emergency bag with the Matron of Honor, my BFF, Rebecca. Rebecca is also in charge with making any necessary phone calls on the wedding day and helping me transport people to and from the reception.

METAvivor Ribbon Charm

Sara made beaded necklaces with the Metavivor ribbon attached as a charm, and my bridesmaid, Micchi, made matching earrings to go with the necklaces. These are just some of the goodies included in the wedding party gift bags.

Speaking of gift bags, my mother is having fun planning and putting together snack lunch bags for everyone who'll be riding on the Jone-Z Party Bus from the reception hall parking lot, to the chapel, and back again, since there'll be a layover around lunchtime at the hair salon where the party's getting hair and makeup done. These bags will include a variety of treats, ranging from healthy (and low-carb) options to indulgent, and include a bottle of water and wet wipes for cleanup. She's also bringing up some local soda water from Texas, fifteen bottles in a cooler, for people who want something other than water to drink.

All this activity and the prospect of a lot of people is triggering Jen's anxiety disorder, so Sara and I, along with Jen's "sister", Kim, are plotting ways to keep the attention off her and keeping her from getting overstimulated and having a meltdown.  My own anxiety disorder is far more mild and tends to present itself when I don't have a lot going on to occupy my attention.

As far as the plans for Pinktober go, I've got almost all the days filled. I'm holding off on writing any more posts to see what my guest bloggers will produce, along with an interview from someone at Metavivor.  I think I have the hang of this queued posts thing figured out, and I'm looking forward to seeing these going live. I think it will be a good month for everyone reading. I'll have a new tag, Pinktober, for all the posts for the month.

Dental Woes and Whatnot

When I was four, I contracted bacterial meningitis. To save my life, I was given some powerful antibiotics that worked, but at the cost of destroying my enamel. This resulted in yellowing teeth and getting cavities and abscesses at the drop of a hat. Not to put too fine a point on it, my teeth look like a meth user's, so my mother and I have been looking into dental implants. I've been appointment-hopping, getting consults, and it turns out I currently have an abscessed molar that needs to be taken care of before I can even begin thinking about consults for implants. Fortunately, it doesn't hurt, probably because there's nothing opposite of it to aggravate it. The molar on the top got abscessed a while before my cancer diagnosis, and that's when I got a few fun facts about me confirmed.

1) My veins are shite. It took seven tries to get an IV working, and all the other attempts resulted in my veins blowing out. As a result, I spent the next couple weeks looking like I'd been battered.

2) Locals do absolutely nothing for me. After they tried - and failed - to get an IV line going for IV sedation, they switched to locals to see if anything would work. I've not had good experience with getting locals to work, and this time was no exception. The first one did work, for all of 10 minutes. The second one just made my face numb, and had the fun perk of worsening the toothache pain to the top of the pain scale. (This crisis was ultimately resolved by admitting me into the hospital and someone there was finally able to get an IV going on me, and I was put under general anesthesia for the extraction)

This means any major dental work done on me has to be done by a place that 1) does adult IV sedation and 2) accepts Medicaid. There's a grand total of one place that fits that bill, the University of Nebraska Medical Center in Omaha. I have an appointment for a tooth extraction on the 12th of September, a few weeks before the wedding. And Jen has to drive me home since they're doing IV sedation, and she loathes driving in Omaha, especially in unfamiliar areas. This is going to be exciting.

Also, this is a teaching hospital. I think that's why the medical team was so ridculously excited to learn that I had a medical port to use instead of getting an IV in my arm. I'm sure a lot of that is because it's easier, but I'm not so sure there wasn't an element of "SHINY TECHNOLOGY!" going on there too. Most people coming in for dental work aren't going to have that.

I'm just glad that this tooth hasn't started hurting and even more that it didn't start hurting during chemo, which is hard on the teeth too. It would have been harder to get dental work done while undergoing chemo. There are false teeth of near-denture quality that can be used to give a cosmetic appearance of having nice teeth at a fraction of the cost of dentures, so I'm going to try that out for the wedding pics. You can't eat with them on, and I'm not sure how comfortable they'd be overall, but I've seen good reviews. There's a reason I smile with my mouth closed in pictures. I laugh too much to be able to remember to keep my mouth closed, which is why my mom's helping me get implants, or if I'm not a good candidate, proper dentures. It would be nice to be done with this tooth business.

In the meantime, I have other things in the works. YSC will be featuring me in an article they're going to publish on October 13, the National Breast Cancer Awareness Day. I'll post a link to it when it goes live. I'm also being interviewed by the local newspaper for an article about Wish Upon a Wedding. The journalist doing the story wants to be able to publish it on the Sunday of the wedding, September 28. I'll post a link to that article as well.

Another metster who has a blog of her own is going to be running guest articles for the month of October, and I've submitted an entry of my own to Telling Knots. I plan to try to post every day in the month of October with information about metastatic breast cancer to fight against the pinkwashing of Pinktober. I'm also using a breeding sim site I'm active on (Wajas) as a way to spread awareness. I have two customs with the Metavivor ribbon colors that I've bred for pups that I'll be selling for game-site currency in October, with a big sales post promoting them and featuring information and links about metastatic breast cancer. To help drum up more awareness, people can buy a pup for only 40k, which is stupidly cheap in site currency, to represent the 40,000 people who die each year from metastatic breast cancer if they post in the thread sharing something that they learned about MBC, forcing them to read the information provided, and also if they pledge to spread MBC awareness to counter the pinkwashing.

One of the pups I bred for myself, fairly identical to how her parents look.

I'm not going to be thrown under the bus, or swept under the rug, and forgotten about in the wave of Pink, Hope, and Cure this October. I'm gonna make some noise.

Wish Upon A Wedding

Wish Upon a Wedding, as I mentioned a while back in my last post, has granted Jen and I our wedding wish.

Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.

Susanne & Jennifer : A Love Story

Many thanks to Marla Austin Photography and A Sound Impression for their hard work!

Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.

Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.

The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.

We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.

In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.

What's been up lately

On May 13th, I had my last chemo infusion for the time being.  I'm on Zoladex and Femara. There's no evidence of a tumor in my breast, and the liver tumor is 0.2cm in size.

I'm having post-chemo blues, as I've mentioned in another post. I don't feel like I should be having blues because I'm getting married.

I was accepted by Wish Upon A Wedding. Sept. 28, Jen and I will get married. Probably in Omaha.

I want to write a long post gushing about this but right now there's not too many details set in stone. We meet with the wedding planner on the 11th. I'll probably have something to gush about after that. Right now I'm still in the in-between doldrums and binging on Grey's Anatomy on Hulu.

Progress Report 3/4/14

"I'm melting! I'm melting! Oh, what a world, what a world! Who would have thought a good little girl like you could destroy my beautiful wickedness?"

If my tumor could talk, that's what it'd be saying.

My onc's progress report from last week is finally on my patient portal website, and I went from mass of 6cm and a significant swelling and thickness in my left armpit at diagnosis at the start of my DD Taxol Dec 10th, to this report on the 4th before my infusion that day:

"L breast was 6cm firm mass at 12-1 o'clock position this is now less defined ~ 2-3cm w/ overlying redness firmness extends into L axilla. L axilla mass now~ not present"

I have another CT Scan coming up at the end of the month to get a better picture and to also check up on my liver mets. (More of their demonberry juice, yum). The overlying redness is residual from when it exploded in a hissyfit after my first infusion and ruptured through the skin in two places. It's healed over now finally.

I'm also amused because in the psychiatry portion of the progress report, he describes me as "alert and oriented times three." I know what it means, but it just sounds amusing, like it goes hand in hand with his teasing me on how bubbly and on the ball I am at my appointments.

A friend commented to me about the Wizard of Oz reference on IRC:
Friend: ...now I'm almost disappointed that your tumor didn't have its own flying monkeys.
Me: That's what the mets is! "Fly! Fly, my pretties!" and off it went to my liver where it started making like it was the scarecrow, but in a surprising fanfiction plot twist, the monkeys got their asses kicked.

Laurel and Hardy from Acme Shipping Company

Yesterday, we went to the house to take some more things over - like video game consoles - since it's supposed to be rainy today. We get there, and there are two big boxes by our front door. One was tall and skinny, and I'll call it Laurel. The other was short and fat, and that's Hardy.

Laurel was maybe four feet tall and for feet wide, but only about six inches deep. Hardy was three feet deep, and three feet tall, while being four feet long. The markings on the box indicate that it might be the bed my parents ordered off Amazon for their room in the new house.

Thing is, they ordered a queen, and there's nothing queen-sized about either boxes. Not to mention the bed was supposed to be delivered Saturday the 15, not Monday the 10th. But damn, they were heavy. We somehow managed to struggle them in the front door, where I promptly attacked them with box cutters to find out what in sam hill was going on.

Laurel was a queen sized box spring, compressed and folded in half. Hardy was the mattress itself, folded and rolled up like a cinnamon roll without the icing.

This is where the Acme Shipping company comes in. Itty bitty (in comparison) boxes, get them open and the product out, and boom, it explodes into full-size. Straight out of Looney Tunes.

The box spring, unfolded and expanded, is very normal and queen-sized and sturdy. The mattress held no creases that one might expect from a mattress being folded and squished, and was rather comfortable when I collapsed on it after we finished fighting with everything.

WHO SHIPS A BED IN LITTLE BOXES? Acme and apparently Amazon. Or maybe Amazon has been Acme all along. WHO KNOWS. I never would have been able to get it inside without Jen's help, and I'm just as glad that it came yesterday and not today. Not only is it supposed to rain today, but I have chemo today. And did I mention them's were some heavy fuckers? Have you ever lifted a queen sized mattress? Have you tried lifting one that was devoid of air and compressed denser than a black hole? I can say I have.

It rolled into the bedroom nicely though, before I took off the tape and overwrap paper. The box spring was bubble-wrapped.

Well, between the bubble wrap and overwrap, that solves my problem of what I'm going to use to wrap my big, good lamp in for the move, I guess. The boxes, unfortunately, could not be salvaged and repurposed for the move. I had to cut them up too much just to get stuff out, and they were already starting to show signs of extreme wear and were filthy to boot.

Why are UPS boxes almost always covered with a layer of dusty grime? Nasty.

But there is a bed, and it came in a box. For a brief bit of time yesterday, my life took a turn into Looney Tunes land.  I can now say I fully sympathize with Eddie Valiant. ~ Smile, darn ya, smile! You know this old world is a great world after all. Smile, darn ya, smile! And right away watch "Lady Luck" pay you a call. Things are never black as they are painted, time for you and joy to get acquainted. Make life worthwhile, come on and smile, darn ya, smile! ~

Busy!

Oh, man. Trying to pack and do chemo in the same week is exhausting. It's like this mountain of work, and I feel like I've only traveled a couple feet up, but damn, them's some hard feet. I did get some new things for the house (a socket adapter for the laundry room light bulb, a curtain rod for the bathroom, a box cutter, a couple ultra-absorbent dish mats, a new sheet/pillowcase set, some more water pitcher filters, dish soap, dishwasher soap, paper towels, plastic storage bins I can use for packing and later for storage, 9v batteries for the smoke detectors, and a new outlet surge protector for the bedroom since the one I have now is getting old and plugs are falling out.) and moved a few things from the apartment to there, mostly working on really fragile breakables that I don't want jostled around any more than absolutely necessary.

But that means numerous trips up and down 2 flights of stairs and that's steadily becoming more difficult. I can't be out of here fast enough at this rate.

I won't have to do the packing all by my lonesome - Mom's coming up from Texas to start helping on the 17th or thereabouts. I just have some stuff that I'd rather take care of myself before she gets here. And the place is so messy it's hard to know where to start with packing. I should clean up.

I need to get more things over there tomorrow, and I have all of next week to do that. But I can only do a little at a time, not the way I used to, so I won't be able to get as much done as I would have in the past, and that frustrates me. Especially because the biggest part slowing me down is navigating those stairs multiple times a day in the process. I am so done with those stairs. They weren't that much of a problem for me before chemo, even though I'd bitch and moan about them from time to time, but I could handle it. It's getting harder the more fatigued I become.

Jen's parents are giving us their old washer and dryer, along with their old fridge. So we'll have two fridges, one'll be kept in the garage for extra space so we can buy in bulk a bit easier. Not sure when we'll be getting those in, but that will also help, no more lugging loads of laundry up and down the stairs and trips to the laundromat.

Tomorrow, I suspect I'm going to feel even more like a giant, beat-up bruise than I normally do, and I'm still planning to try to make myself Do Things. We'll see how that goes.

*bell rings* Round Four!

I start Round 4 of Taxol today. I have 9 more infusions left to go counting the one I get today. (If I said 12 elsewhere, it's because I can't math). I'm going to push for surgery afterward, especially to have the tumor examined to make sure it's still ER/PR+ and Her2- before we begin hormonal therapy.

I'm also going to talk about NOT getting Tamofaxin, because I've read that it interacts poorly with Prozac, which I need to keep my brain from going loopy-depressed. I've battled chronic depression all my life.

Kohl's is still using the stupid Pink Elephant campaign despite now being fully aware they are co-opting METAvivor's campaign. We're still doing Occupy #TalkPink on twitter, and I'm trying to get some other #Talks off the ground, like #TalkMets, and #TalkBlue (for male BC) and #TalkIBC (for inflammatory breast cancer). It's slow, but it seems to be picking up.

Today's a busy day. I ended up with an extra Metastatic Navigator kit from YSC, and I'm meeting with my Nurse Navigator at the cancer center today to hand the extra one over to her to pass it on to someone else who could use it.

I also will probably find out if I'm getting a house. My parents are going in on renting a place with me, my partner, and our roommate so they have a place to stay with us when they visit instead of hotels and can help take care of things around the house if I need it. We found the absolutely most perfect place ever. Cross your fingers and say your prayers that we get this place. I will cry so hard if we don't. Please let something go right.

EDIT: WE GOT THE HOUSE!!!!!!!!!

I'm lucky my parents are finally in a financial place in their lives to do this, and I'm doubly lucky that they accept the fact their only child is gay, and accept my partner as their own daughter. My partner's parents are pretty supportive too, although my MiL is still pretty resistant to it most of the time. She bounces back and forth. My FiL is awesome. We're damned lucky.

My partner, Jen, is slowly coming to terms with this. It scares and depresses her, and she's taking it harder overall than I am. I haven't shared this blog with her yet because I don't feel she's ready. It took me a while to get to a place where I felt ready to discuss my own mortality.

I love her dearly. She's my light and my always. We've been together seven years this January, and still going strong. The early years were the hardest, before we got a clear diagnosis for her own health problems and got her on medication which stabilized it. Her health problems fall under the medical end of psychological, along with severe anxiety disorder, so it doesn't help her in getting to where she can handle my diagnosis easily. She's getting there though, and I'm so proud of her. I'm so in love with her. I'm so lucky to have her in my life.

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.

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!

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.