January 31st, 2013

a-links

[links] Link salad knows there will be peace when it is done

The Acts of Whimsy cancer fundraiser is still live. It has made goal, but additional support is always welcome, especially given my new complications. Please check it out if you have not done so yet.

The Lakeside Kickstarter has expanded its stretch goals to include documenting the science around my genomic testing by traveling to the testing lab and interviewing the scientists there. They'v also posted a new trailer for the movie, which is very striking. So give a little to support SCIENCE!

An Act of Whimsy video from @ eustaciavye77 — She sings a silly SJ Tucker song.

Lorem Ipsum Transition FundraiserOur doors will close forever. Eviction day is coming. The story doesn't have to end this way. Here's what you can do right now to save the bookstore.

A review of Dark Faith: Invocations which includes a special focus on my story, "The Cancer Catechism" — I'm not often moved by reviews of my own work, but this one… Wow.

GIVEAWAY: Win a Complete Set of Jay Lake’s “GREEN” Trilogy! — My friends at SF Signal celebrate the release of KalimpuraPowell's | BN ].

Carry on My Wayward Son (Trombone Quartet) — My teen years suddenly seem so different.

The material that's like an octopusWhen pressure is applied all around them most materials shrink. But materials exhibiting a rare property known as negative linear compressibility (NLC) are different. (Via Daily Idioms, Annotated.)

Tapeworm eggs found in fossilized poop — Man, I want a coprolith to go with my trilobites!

Carrots for Doctors — A New York Times piece on medical incentives that touches on but then sidesteps the real issue in healthcare costs: profit-taking throughout our healthcare finance system. Countries with single-payer systems take less profit and pay lower costs, a double win.

Climate change may be hitting migratory species harder than we thoughtCurrent methods don't consider the whole picture when calculating risk. Actually, it's just Al Gore out hunting them to help keep the hoax going. Ask any Republican, they'll tell you those liberal "facts" and "data" about climate change can't possibly be true.

Idaho gun-nut lawmakers freak out over man with gun in state Capitol (irony alert) — But guns make us safer! Just ask the 80 people killed every day by them!

1 dead in Phoenix office shooting; shooter at large — See how much safer those people are because of widespread private gun ownership. The NRA and the GOP, still protecting the Second Amendment rights of angry, impulsive people everywhere to kill at a whim, as should always be in the case in a just, safe and moral society.

Gabby Giffords made me cry. America? And you? — Roger Ebert on gun control.

Moral Perversity In David Mamet — Andrew Sullivan on David Mamet's recent bizarre and counterfactual piece on gun violence. I read the Mamet piece when it came out, and couldn't even begin to frame a response to its ghastly amoral stance.

African-American Travel and Jim Crow Segregation — I've heard of the Green Book before. A sobering reminder of white privilege and racism.

Can Republicans “Disengage” from Obama?Because many Republicans and conservatives assumed the worst about what would follow Obama’s re-election (this was the “Obama unleashed” idea), they are going to be more inclined to try “winning a series of confrontations with the president” rather than less. The other problem is that many Republicans are likely to continue reacting to Obama’s re-election as they did to Clinton’s, which was a combination of disbelief that he had won and an increased obsession with “getting” him by way of investigations and scandals.

QotD?: Do you cry no more?




1/31/2013
Writing time yesterday: 0.0 hours (still in post-operative recovery)
Hours slept: 8.0 hours (solid)
Body movement: 0.0 hours (still in post-operative recovery)
Weight: 224.4
Number of FEMA troops on my block protecting women from violence: 0
Currently reading: Equal Rites by Terry Pratchett

cancer-skull_tattoo

[cancer] Field notes from Cancerland, further observations

Taking Umbrage

A couple of days ago, I linked to the Alternate History of My Cancer video that Waterloo Productions did with me while I was recently in the hospital. I am aware this has offended some people, especially those who have lost loved ones to cancer. Still, if I can't make fun of cancer, who can? I'm losing myself to cancer, my life has been eroding around me for years. If I couldn't laugh at it, I'd already be dead. Everyone has different lines of taste, propriety and offense-taking, but I'm not going to apologize for making light of that which has already stolen half a decade of my life and is highly likely to steal what's left, permanently. This isn't a time for decorum, this is a time for spitting in cancer's eye.

Publishing

I'm starting to have conversations with publishers along the lines of, "If you die before this finishes production, how do you want us to…" Cheery as heck, but not beside the point. Chances are fair that I'll spend most of the rest of my life in treatment, which seriously impairs my ability to write. Likewise, I received a convention GoH invitation this week to which I can't respond positively, because I cannot confirm future availability with any confidence. Even if I get through this by some hook or crook, my publishing career is decidedly winding down. I'll wind it back up again, should circumstances permit, but this depresses me. Another thing cancer has stolen from me.

Life Insurance and Long Term Disability

It turns out that I can draw down from my death benefits associated with my life insurance policies. Early disbursement would allow me a lot of flexibility in settling my debts and arranging end-of-life care expenses, as well as funeral costs and so forth. Unfortunately, thanks to the magnificence of our tax laws, the same funds which are tax-free if paid to my beneficiaries are taxable income if paid to me in advance of my death. Which makes drawing down from the policies financially ridiculous. I'm now investigating whether my credit union will accept life insurance policies as collateral on a personal loan, should such become necessary.

I'm also still puzzled at the fundamental cruel illogic of long term disability benefits. First of all, virtually every LTD benefit out there, including SSI, assumes that sick people can get by on less money than well people. They only pay a reduced percentage of your income. This is a ridiculous assumption, as experience as well as common sense clearly indicate that being sick is more expensive than being healthy. Even worse, as I've commented before, my primary LTD coverage, through my employer, explicitly deducts the value of any secondary LTD benefits, such as my much smaller self-paid plan and/or SSI benefits, from their benefit. Which appears to be perfectly legal and horridly unfair at the same time.

The system is very much stacked against sick people, and the terminally ill. The time, mental energy and organizational skills required to navigate all the nonsense is overwhelming, at a time of life when people are the least prepared to deal with that. I've come to realize this is a great moral failing in our society, one that we are largely blind to, and which we make excuses for when confronted. Meanwhile, sick people fall deeper into poverty and the miles-long tangle of paperwork imposed by compliance and fraud prevention, which are strongly prioritized over helping those in actual need.

Privilege

Once again I am also confronted with the exceptional amount of privilege (in the social justice sense of that term) with which I am blessed. That, and sheer luck. Sheer luck caused my cancer to present in a relatively early stage back in 2008 (for all the good that wound up doing me). Likewise luck found my lung metastasis in 2009 was found literally by accident. But the privilege…?

Having a job I can perform the essentials of even when rather ill is huge. If I had to work on my feet or face to face with customers, I would have been unemployed most of the past three years. Instead I enjoy remarkably flexible working conditions with a very supportive manager.

Having a high-end white collar job with good benefits, and smart people managing those benefits.

Knowing how to navigate complex administrative impediments because of my socioeconomic background and education and work experience.

Having a wide circle of friends and family so that I enjoy considerable support for lifestyle issues, caring issues, and administrative/paperwork issues.

Having a wide circle of friends and fans so when financial necessity finally caught up to me in the form of the extensive out-of-pocket costs for the genomic testing, funds could be raised through the generosity of hundreds of people.

The list goes on, but basically, without sheer luck and substantial privilege, I'd be destitute or more likely dead by now. Not because of the basic healthcare issues — after all, I've survived this long — but because of the drain on personal and financial resources discussed above. I simply couldn't have afforded to stay alive if I were doing this all on my own.

Longevity

Though I haven't personally seen the stats, I'm told I've outlived 92% of my cancer cohort. Certainly my disease progression has neared the end of the treatment flow charts. I probably shouldn't be alive even now, and as discouraging as things are, I'm not exactly at death's door at the moment. I don't know what this means to me, emotionally or logically, but it seems important to take note of. And to be thankful for.

cancer-hereafter_is_closed

[cancer] The hour and manner of my death

I've been thinking a lot since the surgery, as I've emerged from the post-operative fog and am working my way along the paths of pain. The new metastatic tumor sites uncovered during the surgery make things a lot more serious than they already were. And that is saying something. I have not given up seeking a cure — hence the genomic testing of my tumor — but it seems highly likely to me I will go terminal within the year, or at best, sometime in 2014. Even then, it will take time for me to die, possibly up to another year.

Just lately, I've been seeking some meaning in all this. Given that I'm a low church atheist1 and a strong rationalist, I'm perfectly aware that the universe doesn't carry meaning, per se. It just is. Meaning comes from the interactions we as thinking, ensouled2 human beings experience with one another and with the universe at large. Meaning is what we make of it, to be found where we assign it.

Death is the least surprising part of life, after all. The only certainty you can assign to the prospective life experience of a newborn child is that they will someday pass away. Everything else is a combination of luck, circumstance, training and experience. Yet we live largely in the pretense that death will not come to us personally. Many religious narratives are framed around mitigating the impact of death through reincarnation, an afterlife, or some other form of immortality of the essential self. Comfort for both the future decedent and the bereaved. We seek to reverse death in so many ways, to transform that most unsurprising of events into a surprise which can be safely deferred or ignored.

Obviously I do not know the precise hour and manner of my death. But I know it will likely come in the next year or so, and it will come due to organ failure and the related system breakdowns as my cancer advances. The bullet with my name on it has been inching towards me for almost five years. I can watch it spiral in the air as it lazes ever onward toward my as yet still beating heart.

This is the most frightening experience of my life.

But I don't want to die in pain and fear. I don't want those around me to live in pain and fear. Sorrow is inevitable at the passing of someone beloved, but I want my passing to mean more than months of dread and a final death watch.

I don't know how I will make that meaning take form, or even if I am wise and patient enough to do so. This isn't about glamorous soap opera diseases or Special Dying Person wisdom. I just want my love and friendship to be more powerful than the disease which continues to erode my body and perforate my soul.

If there is any joy or sense to be found in knowing the hour and manner of my death, I hope to find it.




1. When I say "low church atheist", I mean I'm not of that mindset that seeks to deconvert others or discredit religion. This in contrast to the "high church atheist", who advocates strongly against religion in all its forms. (Yes, I will have my little jokes.) My quarrels with persons of faith begin and end in the public square, where I firmly believe based on ample evidence that a rational secular humanism best protects the rights and freedoms of everyone, regardless of their faith. In the place of worship and in the home, believe what you will. As I've said before, I will defend to the death your right to your religion, and I will equally defend to the death my right to be free of the strictures of your religion.

2. Yes, I know I'm an atheist. When I say "ensouled", I mean that part of the human mind and experience sometimes described as mythos — the part of our minds that partakes of spiritual experiences and perceives the world through filters other than rational empiricism. This in contract to logos, the rational mind. I'd be a fool to deny that the spiritual dimension exists, especially as given that I'm a writer, I see how strongly story telling taps into those deep, deep wells. What I don't see is any reason to believe that the soul is anything but an emergent characteristic of the architecture of the human mind.