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 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

----

And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

October 8: Things Not to Say - Part 1

Someone on a Metastatic Breast Cancer support group on Facebook created a game for Metsters. A Bingo card, with comments that often are spoken by well-meaning, if ignorant people. Over the next few days, I'm going to be tackling some of those comments, and I'm going to be blunt about it. But I also want to say that once upon a time, I thought this way too. This is the problem of pinkwashing, it creates a false reality around cancer and shields us from the harsh facts about Metastasis. So when we are confronted with it, all we have is a false reality to draw on for something to say. This isn't to shame, but rather to educate. I apologise in advance if some of my frustration becomes evident.


"You are so brave."

Uh, thanks, but not really. I'm facing this scary thing because I have no choice but to do so if I want to keep living. I'm not brave, I'm just trying to survive and live my life. I'm not in this situation because of any choice I made. I'm just doing what you're doing, trying to live. Telling Knots compared living with MBC to being on standby for a flight. While it's true we all have to go sometime, that's comparable to everyone having to board the plane sooner or later. The difference is, people with MBC are in the airport, with tickets in hand, on standby for when a seat opens up. We don't want to be called, we don't want that seat to open up, but we're ready for it. That's not bravery.


"You look great!"

Please. I'm in a wrinkled T-shirt and faded jeans, without a stitch of make-up on and I'm bald. I don't even have eyelashes and eyebrows. I look like hell, and I know it. Telling me I look great? I can hear the unspoken words. "For a cancer patient". After all, I'm up and around and going on with life, rather than wasting away hooked up to tubes and wires. I don't look great though. I look worn out and washed out and as tired as I feel. Instead of a false compliment when we're worn down to the bone by the cancer, why not simply tell us how good it is to see us? Isn't that what you really mean?


"Stay Strong!"

As opposed to what? Giving up? I guess there's some merit to that, but do you know how exhausting it is to stay strong all the time? We have to, though. This is why it's so important that people with metastatic disease have their own unique safe space with others facing the same problem in which they can vent. We can hardly tell our family and friends how tired we are of fighting this, how sick the side effects are making us feel, how scared we are. We have to stay strong and put on a brave face to keep the people around us from falling apart, or worse yet, walking away. Almost every day I see a post from a fellow metster whose spouse has left them, whose children won't talk to them, whose friends are becoming absent. Stage IV is a slow death, and if we're lucky, we get a long time where we're not actually dying. But the fear is still there. We are hushed at breast cancer support groups because hearing our stories scare the earlier-stage survivors. No one wants to talk about metastatic breast cancer. So of course we have to stay strong. Society doesn't give us a choice.


"You'll be fine."

I fully admit to being guilty of this one. I said it about myself. In fact, when I'd be telling people I had Stage IV Breast Cancer, that's what I'd tell them, "But don't worry, I'll be just fine." I was blinded by pink, and didn't fully grasp the scope and depth of my metastatic diagnosis. I'm doing fine, but I'm not fine. I have a terminal stage of cancer. It's currently stable, meaning it's not currently killing me, but that doesn't change the fact it's never going to go away. I will never be exactly "fine", because when we say "You'll be fine", we really mean "You'll be cured". And that's not going to be the case.

 ***
Part Two
Part Three
Part Four

October 6: Milestones

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

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

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

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

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

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

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

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

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

That's the reality of metastatic breast cancer.

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.

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)