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 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 20: Obituaries, a MBC reality

In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.

One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.

I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.

This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary.  Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.

Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."

I want the obit printed in three newspapers.  The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.

I want memorial donations in my name to go to any of these beneficiaries:
 http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/


This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.

If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.

October 17: How I Reacted to My Diagnosis

On my Facebook, I opened myself up to questions for entry fodder for this month. Here's one of them.

What was it like when you first heard your Metastatic diagnosis. How did you cope? First thoughts? First days? First month? Now? -Beth

 When I first heard the words Stage IV, it wasn't entirely a surprise, but for the wrong reasons. My primary mass was 6 centimeters in size, and I thought that size was related to stage. It can relate to stage sometimes, but not always. I assumed because the mass was big, that meant it would be Stage IV. I didn't fully understand what that meant.

I thought I was still able to be cured. I thought I'd be fine, that I just had to power through harsher treatment, more chemo, more surgery than an earlier-stage patient might. You could say that I coped with denial. I wasn't dying. That couldn't be true. I would be just fine, just you wait and see.

I argued with my oncologist. I told him to mark my words, I'd be cancer-free, I was strong enough to beat this. Bless him, he didn't argue back. He knew I'd come around sooner or later, and that it wasn't the time or place to push the issue.

I walked a very fine between calm and screaming despair, like walking a tightrope. I put on the bravest front I could muster in an effort to convince myself that I would be okay. Whenever my thoughts started to run wild on me, I brought them back under control by reciting the Litany Against Fear from Frank Herbert's Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

Jen and I at the salon when we got our heads shaved together.

 I fully and wholeheartedly believed, thanks to the pinkwashing, that I just had to be strong enough, brave enough, tough enough to fight this and beat this thing, and I would be fine.

Coming to the realization that wasn't the case was harder.

I was still convinced I'd be fine a month later, but I was starting to think of it more as a simple, chronic, and wholly manageable disease I'd just be on medications for for the rest of my life. I was starting to achieve some inner zen though, around the time my hair started falling out and I went in to have my head shaved.

Coming to terms with my own mortality, I wrote about that back in the early days of this blog.

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

That's kinda fucking terrifying to realize.

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

But like the pool or hot tub, once you're submerged, it no longer feels as bad as it did going in. Sometimes it's even a comfortable feeling.

I think the imagery of Medusa and the shield is the best way to describe what it was like for me to face my own mortality. I couldn't look it directly on, or I'd turn to stone. I had to look at an indirect reflection to be able to face it. Once I was able to face it, I slowly became accustomed to it.  As I became accustomed to it, it lost its power to turn me into stone. Now, I can look at it straight on and say "I'm terminal" without a rush of panic or stammering excuses.

I'm doing fine now, better than fine, actually. According to my oncologist, I'm doing great. I do attribute some of that to my ability to achieve that calm zen I felt during my time in chemotherapy, staying calm and chill and upbeat. Positive thinking won't cure my cancer but it did make the side effects less horrible overall.

October 13: Metastasis is an Ugly Word

It's October 13th. Today is National Metastatic Breast Cancer Awareness Day. We get one whole day out of the entire pink month of October. One day. And that's a day people try to co-opt for bogus Facebook games that do nothing to spread awareness or raise funding for metastatic disease.

Today is the entire sum of this month's worth of blog entries, so instead of soapboxing on any issues I've covered, or will be covering in the coming days, I'm doing something special.

I'm sharing an excerpt from my memoir, Metastasis is an Ugly Word, when I first learn that the so-called cyst I thought I had was actually cancer, back in the days when I was still blinded by the pinkwashing of the disease.

*******

When I went to the Family Health Services clinic to have the cyst drained, the doctor examined it, and refused to proceed. She said it felt too solid, and if it was a cyst, it would be a more involved task to drain it than she was equipped to handle. She gave me a referral to a surgeon, which terrified me.

Not because I was worried that it might be cancer, but because I was worried about how I was going to afford that. I was thirty-nine years old, still more than six months away from qualifying for Every Woman Matters. Then she told me that wasn't true. I had an actual lump, it didn't matter how old I was. I qualified for that reason.

I was flabbergasted. I told her I'd never heard that, I'd looked into the program before, that I'd never received the impression it was accessible to me before the age of forty, lump or no lump.

"I know," she told me.

That made me angry. But what was done was done. I was there, and I would be able to see a surgeon to get a biopsy, and I would be covered under the program. No use in looking back and being angry about what might have been. Just another appointment to work into my mostly-free schedule.

I just let Karen, my Human Resources contact at work, know I'd not be coming in that day, as I was still on light duty per worker's comp because of my wrist. Most of my time at work was spent doing nothing but sitting with a certain resident who needed a one-on-one caretaker pretty much around the clock. Although I wasn't medically cleared to physically assist him if he needed to go to the bathroom, I could free up the other CNAs to work the floor and stay with him and make certain he didn't try to stand on his own.

By now, it was November 12th, and once more I'd waded through a world where everything was flooded with pink ribbons everywhere. If you didn't have Awareness about the Pink And Beatable Disease Of Women, you lived under a rock in the middle of nowhere. But I was still too young to worry about breast cancer. Besides, there was no history of it in my family to my knowledge at the time. GI tract cancers were a different story, but I had no symptoms for one of those either, and aside from an injured wrist, I was strong and healthy.

The day for my appointment came, and I went to the surgeon's office at Bryan West Hospital. When she did the biopsy, the tissue proved to be solid, not a cyst. Either the surgeon was a remarkably good actress, or she too wasn't terribly concerned about the possibility of cancer. After all, eighty percent of breast lumps are benign, especially for women in their thirties into their forties. Still, the biopsy sample was on its way to pathology, and the office would contact us once they had the results.

A week went by, and every day while sitting with the resident at work, I would pull out my phone and check the patient portal website I was given at the surgeon's office and look for results. The more I checked the site, and the longer it went by without an answer, the more anxiety I felt. It chewed on me enough that several coworkers and residents noticed my increasing agitation, and asked me what was wrong. To the residents, I simply said I was just thinking about something at home, and to my coworkers, I admitted the truth. I had a biopsy on a breast lump.

Saying it made it real, saying it brought in dark and scary feelings of panic. What if was cancer? What would I do? How could I afford it? It couldn't be cancer, we couldn't afford it, I'd die from not being able to afford the treatments, didn't that happen all the time? Why wouldn't they just post the result, why was it taking so long? I was going to load the page, and any minute now, it was going to tell me what the results were, and they would be benign and I'd laugh at myself for being so paranoid. Just another possible serious medical issue that turns out to be nothing at all.

I was already on Ativan for occasional anxiety attacks, and I took more of it now. I couldn't sleep. I was a bundle of nerves inside and working overtime to keep the nerves concealed. At night, I distracted myself with reading Watership Down for the umpteenth time, while in the back of my mind wondering if this might be the last time I'd ever get to read the book. No, that was silly. It wasn't cancer.  It was going to be fine.

I was sure there would be results posted on Friday, but there was nothing. The weekend rolled by in silence, and I was even more certain there would be something on Monday. Again, nothing. On Tuesday, a full week after the appointment, Jen called the office. My stomach twisted into horrible knots while I tried to make out what was going on just from her end of the conversation.

I couldn't stand it any longer.

"Is it cancer?" I whispered, twisting my fingers around each other.

She nodded.

My world dropped out underneath me and a cold wave of terror flushed every nerve. I started to panic and she shushed me, still trying to listen to what the doctor was saying on the other end.

November 19, 2013, I entered the New Normal.

The New Normal was a world that had cancer.

It's Cancer. Cancer. Cancer.

I was sure it was some horrible dream. I was in full-blown panic, our roommate came to see what was wrong. I was hysterical. The tests had to be wrong. No, it wasn't cancer. It was supposed to be something easily removed. It wasn't cancer. I couldn't have cancer. Cancer meant I was dying, no no no no this wasn't happening!

It wasn't that I didn't think breast cancer was easily treatable, that there wasn't a cure. As far as I knew, that was the case. But the money! Where would we get the money for the treatment that would save me? That is why I panicked. How were we going to afford this? I was going to die from a treatable disease, just like so many other Americans who couldn't afford health care. What were we going to do?

The surgeon said it was Invasive Ductal Carcinoma. It was the most common kind of breast cancer, easily treated. Easily treated. I'd be fine. Jen talked me down out of the panic attack, I was going to see an oncologist at the Southeast Nebraska Cancer Center on the 22nd, it was all still covered under Every Woman Matters, it was going to be fine.

I remembered the insurance I purchased in July of that year, and the cancer coverage, thinking of my resident who'd passed from colon cancer, thinking of my grandmother who passed from pancreatic cancer, not thinking at all of a cancer that no one in my family I was directly related to by blood had experienced. Or at least, that is what I knew at this point. I'd either never known or I had forgotten that my great-grandmother on my mother's father's side had breast cancer when she was younger.

I got on the computer and went to Facebook, looking to see if Angela, a friend of mine who does the schedules at work was online. She was. I asked if she was at the facility and when I got a confirmation that she was, I asked her to stay there. I needed to come in and it was big.

I grabbed the paperwork, planning to talk to HR about what I needed to do to get that insurance, and went to work. I didn't think about cancer, I focused on driving that mile and ran inside.

I told Angela, and the first thing she did was hug me, then grab my wrist and drag me to the office next to hers, the HR office. That's when I found out Karen herself was seven years out from a breast cancer diagnosis. I was with people who understood the panic I was desperately fighting and the relief of being understood, of being with people who had dealt with it and were okay, I broke down crying as the worst of the fear died down.

Karen said she'd come with me to the oncology appointment on Friday. Angela made certain I understood that I was not to worry about money. Declare bankruptcy if needs be, but the important thing was to focus on fighting. Not on worrying about what it was going to cost. Money wouldn't replace my life.

I had an appointment upcoming the following week to do surgery on my wrist, since it was healing too slowly for our liking. I was still on light duty, and the next few days of work were spent mostly getting told I was going to be fine, and talking with the former director of nursing, who had stage IV breast cancer. It was going to be fine.

I was going to be fine.

I could beat this thing. It was curable. It was just a bump in the road, I'd be fine, this would be cured, I would be cancer-free and back on track with the job I loved.

It was still terrifying though. But I knew that my outlook had some input on my chances for survival, regardless of the disease. People who give up in defeat do worse overall than those who keep a positive nature. I worked with that every day, I saw it in action, I knew this. So I knew I couldn't let fear and anxiety win.

I behaved in the manner I wanted to feel. I projected the kind of positive outlook I wanted to have. I acted far more confident than I felt, and I refused to allow the fear a foothold. Every time I started to panic, I would stop and recite the Litany Against Fear from Frank Herbert's Dune until I calmed down. As time went by, I found myself having to recite it less frequently.

"Make believe you're brave, and the trick will take you far." That line from the Rodgers and Hammerstein musical The King and I was true.

I could do this thing.

October 2: The Difference

What is the difference between earlier-stage breast cancer and Stage IV?

The biggest difference is the prognosis. Once breast cancer becomes Stage IV, it is considered treatable, although not curable. There is no cure for cancer that has spread beyond the breast tissue. There is no chance of being able to declare themselves cancer-free, or cured, or have an end to treatment.

People in stages 0-III can reach a point of being cancer-free, and if they maintain that long enough, they can cease treatment and resume their previous life with just the occasional scan to remind them of the cancer.

People with Stage IV breast cancer do not have the option of stopping treatment and still surviving. We can and do cease treatment, but only when it is no longer effective, and the side effects diminish the quality of life to the point it is no longer worth it. When we stop treatment, it's usually when we enter hospice.

This is a rest-of-your-life thing, and the average rate of survival for Stage IV breast cancer is only three years. There are people who live ten, even twenty years past their diagnosis, and people who have only a few short months to come to terms with reality, but the average is three years. The number of survivors past the three year mark starts to drop the further away you get.

The difference is, the diagnosis is terminal. It's incurable. There is no 'end' to the treatment or the disease. Cancer is your new reality, for the rest of your life. You do everything you can to prolong it, but the chances are, it won't be anywhere near long enough.

The pink ribbon doesn't fit Stage IV. There are no survivors. There are only the fighters, and the fallen, taken from this world far too soon by the beast. We cannot "beat" this. We can think positive as much as we want, and while it can certainly improve the quality of life, it doesn't actually impact on the final outcome.

We are not survivors.

In the battle against breast cancer, we have received mortal wounds.

The difference is the words Hope and Cure are meaningless to us. And the worst part is, thirty percent of the people who believe in those words are going to find out the hard way just how false and hollow those words ring.

"I'm getting very tired of this cancer of yours"

(Originally posted in the Young Survival Coalition Metastatic forum 18 July, 2014)

So that's making the rounds on Facebook. It's a very important concept, as my partner suffers from mental illness (and most of us with cancer have developed depression or anxiety) and mental illnesses are just as real and difficult as visible physical ailments.

But the top one had me thinking. That's something I've seen others with mets complain about hearing, how friends and families get tired of dealing with the never-ending reality of cancer, especially when we're in a place of stability. We have fatigue, physical issues, aches and pains that come from cancer, and we might be surviving for years with this.

My mother in law doesn't think I'm dying, just because I'm stable at the moment and I'm in relatively good health otherwise. I'm not actively dying, but only because I'm in treatment. I'm still stage 4. People get tired of the New Normal of stage 4 cancer, and start complaining about this little cancer problem of ours, like we can't be surviving with it, like a chronic condition. It's like the only acceptable options for cancer are 1) getting cured or 2) actively dying.

I can't go back to work, if I do, I lose my medicaid coverage which is paying for the scans and drugs that are keeping me monitored and stable. This is not going to end. The only way I'm getting off Zoladex and Femara is when they stop working. Not if. When.

I woke up today and about an hour later I had to stop and think because for a few scary moments, I was so sure I had brain mets. I dreamt that the scans showed brain mets. It wasn't a nightmare, I didn't wake up screaming or crying, It just faded out in a normal sleep cycle like a normal, natural thing and it was so easily incorporated into this new normal that I had to stop and actively remember that it never happened. And even after that, there was still the lingering "I have brain mets now" feeling. I don't have any symptoms to suggest it, it was just something in a dream, but that's the kind of normal my life is.

I have The Cancer. I will never stop having The Cancer. Even if I get NED, I will have The Cancer. It just means it's not actively killing me at the moment. It's never going to go away. And my life has become something where I can dream I have new mets and it just feels so normal and easily absorbed into my life that it doesn't strike me as odd.

We're tired of this cancer of ours too. We don't want it to be our reality. So a hearty fuck you to the families and friends who tell us that they're getting very tired of this cancer of ours.

Mets sucks. We're not necessarily actively dying, but we'll never be cured either. We don't always look sick, even if we feel sick. It becomes a chronic, invisible illness that's killing us slowly and it feels like we fade out more and more with every year we survive. We're often not welcome in cancer support groups, asked to not share our diagnosis lest we "discourage people".

This is the purgatory of breast cancer, the in-between that falls through the cracks. I want to do more, I want to make people realize where their donations really go, get people to realize that mets research needs more funding. I want us to be more visible, to have a louder voice, and I look around at the women who are already doing that, donation groups like METAvivor which are channeling funding to mets research, and see that we're still getting ignored. How much more will it take, when will people start to listen, how will we become visible?

I'd like to think that it's the lack of mets funding that's been hurting Komen so badly the past few years and while it certainly plays a part, the big blow is the withdrawal of funding to Planned Parenthood for screening low-income women for breast cancer. It still goes back to "early detection" when women younger than the "accepted" age for breast cancer develop the beast. It still goes back to "early detection" when that really doesn't do jack for stopping anyone from developing mets. It's all about early detection and the "cure" which doesn't exist for ANYONE.

It makes me feel like I'm faking it. I get a shot once a month, take a pill once a day, my hair's growing back, I just suffer from hot flashes and that's it. I have cancer. But I'm beating it back and it's not harming me at the moment. I'm not cured, I don't have a "five year milestone" after which I'll be able to move on from cancerland. But I'm not "sick", and I'm not really doing anything either. I'm not faking it, but the Breast Cancer Awareness movement makes me feel like I am.

I'm sorry for this tl;dr full of feels that ramble all over the place. I don't want us to be invisible anymore.

And a few months ago, a store clerk, upon asking what kind of cancer I had (my partner and I were wearing shirts that said fuck cancer) and learning that it was breast cancer... her reaction was "oh, good" and a smile of relief. This is why mets gets ignored. There's no smile of relief for us.

Deep Thinky Thoughts™

I know I haven't updated this in a while. I'll work on a post to bring things up to date later. Later. Not right now. I have too much in my head right now to focus on that. A friend on the book of faces posted a link about the need for doctors to be willing to recommend palliative and hospice care for terminal patients, and it hit off a panic button in me.

This past month has seen a lot of losses among the metastatic ladies in the online community, and although I didn't know any of them particularly well, it's still a bit of a shaker. The average lifespan for someone diagnosed with metastatic breast cancer is three years. There's plenty of women who live longer than that, but a lot of women who die far sooner than that.

I only have the one spot on my liver. Just one. And I haven't worked my way through any treatments yet, save for one: Taxol. That's just one scratched off a long list of the things available to me as an ER/PR+ Her2- breast cancer patient. And my tumors responded quite nicely to the chemotherapy. I'm starting in with Zoladex at the end of the month in hopes that it will help keep the tumors stable for a good long while.

It still scares me sometimes to think that I'll be on hospice care someday. I don't intend to stop fighting until I've run through everything the medical world has to offer me. I can't stop. I won't give up, I won't call it quits, not while there's still a chance something might work, not while there's still treatments I haven't tried yet. I'm not giving up.

A part of me is afraid my care team will give up on me, though, and reading articles that encourage doctors to think about offering hospice care instead of treatment makes me panic. My onc has promised me he'll fight with me on this, and I have no reason to doubt him, but I'm still scared of being told "We think that hospice would be better for you than X or Y treatment."

That's just the beginning of the end and while I accept that there's no cure for Stage IV, I'm not willing to accept the end is anywhere but a long way away from here.

This isn't fair. This isn't fair. Fuck cancer. Fuck this. It's not fair. I have people who need me. I can't give up and I won't give up and hospice is giving up and I can't do that. Let me live. I accept that this disease will kill me, but I'm not ready to go. It's just the one spot, I have a lot of treatments available to me, I'm not going to be in the lower end or middle of the statistics. I can't be.

Fuck cancer.

Songs for Funeral and Visitation

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

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

Funeral: 

These Are the Days of Our Lives, Queen

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

When the Crowds are Gone, Savatage

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

City of Hope, Stevie Nicks

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

High Hopes, Pink Floyd

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

Visitation: 

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

A Place in the Circle, Rich Follett

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

I Will, Sowelu

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

Lost Heaven, L'Arc~en~Ciel

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

I'll Meet You There, Whiteheart

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

My Last Step Beyond, Edenbridge

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

Seasons of Love, RENT

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

I Grieve, Peter Gabriel

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

Thanatopsis

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

Thanatopsis - by William Cullen Bryant

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

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

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

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

In the truths that she learned

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

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

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

So much pinkwashing.

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

That's kinda fucking terrifying to realize.

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

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

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

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

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

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

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

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

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


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