February 1st, 2013


[links] Link salad has the staples

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!

The Drink Tank talks about me, cancer and fandom — Thank you, Chris.

RNA Fragments May Yield Rapid, Accurate Cancer Diagnosis A new method to noninvasively diagnose cancer and monitor its progression could eliminate the need for painful and sometimes life-threatening biopsies. (Thanks to Barb M.)

Chemotherapy Can Inadvertently Encourage Cancer Growth — This may be what has happened to me. (Via @dratz.)

Meyer the Mormon — Sherwood Smith with an interesting bit about Twilight</em>, as well as a link to a much longer article.

Men who help with housework get less sex — This story seems both counterintuitive, and filled with dodgy assumptions.

Disco Scallops Know How to Boogie Even if They Aren’t Scallops — (Via Daily Idioms, Annotated.)

How owls swivel their heads

The Old Bus: 1937Old school bus. Williams County, North Dakota. Wow...

How Drought on Mississippi River Impacts YouThe drought-plagued Mississippi is holding up barge traffic, sending global ripples.

Will Deep-sea Mining Yield an Underwater Gold Rush?Some environmentalists say the lure of precious minerals threatens ocean life and local cultures.

Fire and Ice: The Frozen Aftermath of a Chicago Warehouse Fire — Wow. (Via Lisa Costello.)

What Gun Owners Really Want I’ve owned six guns. I’ve drawn them on bad guys. I want to be understood.Firearms exist to manage situations where rationality has failed, so thinking rationally about them can be hard.

Milan court convicts 3 Americans in CIA kidnapping — Good. Apparently the American justice system is never going to hold anyone accountable for the high crimes and misdemeanors of the Bush administration. It's nice to know the rule of law applies somewhere.

Chuck Hagel Mauled in Bizarro World of US Senate — Yep. This.

QotD?: Ever had 32 staples pulled from your belly?

Writing time yesterday: 0.0 hours (still in post-operative recovery)
Hours slept: 9.0 hours (solid)
Body movement: 0.0 hours (still in post-operative recovery)
Weight: 224.6
Number of FEMA troops on my block protecting women from violence: 0
Currently reading: Equal Rites by Terry Pratchett


[cancer] What do you say to someone like me?

Yesterday's post on the hour and manner of my death drew a substantial number of comments on both sides of my blog [ jlake.com | LiveJournal ] as well as on Facebook, many of them very touching. Thank you, everyone. It's an interesting (and sobering) reminder of the journey I'm on, which I've made a deliberate choice to share quite openly.

To that end, I still mean to compose a post on the surgery experience itself. That will come. After I see my medical oncologist on Monday, I'll have something today Tuesday or Wednesday. I don't expect answers from them so much as more questions. Cancer really is a disease of statistics and post facto analysis, and is not amenable to accurate forecasting on a case-by-case basis. In other words, expect more existential confusion on my part.

Several folks asked me what they could say or do, how to talk about this process. My first and most important answer is that this is very idiosyncratic. Everyone in a position similar to mine probably has a different way of thinking of this, of wanting to be approached. Many people are intensely private about illness for a whole host of reasons. Many people seek comfort in religious faith or spiritual practice. Some people just surrender to the process. Some fight to the bitter end.

As for me, I have to say, there's not much anyone can say that's substantive. Expressions of support, whether in the form of good wishes, keeping a candle lit, prayers or whatever, are always appreciated. But mostly, I am fine with an acknowledgment that this situation is lousy. "That sucks, man," sits well with me because it's the simple truth. I really don't need to be treated any differently, I'm still me, regardless of the circumstances. Sometimes a very reduced me, depending where precisely where medicine and my brain are intersecting, but still me.

If you're close enough to me in real or virtual life to offer some specific help, that's good, too. My immediate, local circle of friends and family (a/k/a the Tribe) are very engaged with logistical and moral support on an in-person basis. Other, more geographically distant, friends offer other kinds of support, from running the Acts of Whimsy fundraiser, to acting as my science advisors, to creating art and artifacts that delight my heart, to just sending me bells and funny cards and cool hats and coproliths in the mail.

But mostly I appreciate knowing that my words, my testimony of cancer and its discontents, reach people. It's not that I feel like I'm shouting in the dark, as I am in fact very aware of my audience. It's just that feedback helps.

That being said, I have a funny reaction to some things people say to me. This is entirely my issue, not the fault of the speakers/commentors, but I'm pretty allergic to being told I'm a hero, or that I'm brave. By my own lights, I'm doing what has to be done. I didn't choose this life, I don't want this life, but being a cancer patient is what I am. So I do what I must. To my way of the thinking, there's nothing heroic about my life. Heroism, bravery — those require choices and sacrifice. I don't really have choices any more, and what I have given up has been seized from me by this disease rather than freely offered by me as a sacrifice.

At the same time, much as I believe the story belongs to the reader, I recognize that my experience belongs to everyone else who witnesses it. I have chosen to be public about my illness. What that means is up to each and every one of you reading. So it's not fair of me to cringe from statements about bravery or inspiration if that's what you see in me. It is only for me to acknowledge and thank.

In sum, say what you will. We are all mirrors of one another's souls. What you see in me is what you need to see in me, just as what I see in you is what I need to see in you. I'm not a delicate flower to wilt at the wrong words. I'm just a man, fighting for his life, and narrating that struggle, whether to the bitter end or to a satisfying deus ex machina that might yet lift me free of this tumor-riddled valley of the shadow of death.

My words are my offering, nothing more. Make of all this what you will.


[personalcancer] In other news...

I got identity scammed twice in the last twenty-four hours.

The first was a suspicious debit card transaction on my checking account which showed up yesterday. A very small, even numbered amount, from a business I patronized regularly, after I had not been in for about two weeks. I called them and they had no idea what it was about. I called my credit union, where we decided the whole was just odd enough to be worth cancelling my debit card under the theory that someone was a running a test transaction. The resulted in a visit to credit union branch yesterday evening, after which Lisa Costello and I had a rather nice dinner at Portofino, as it was just down the block from the branch.

The second was this morning, when I sleepily clicked on a link in a Twitter DM and was asked for my Twitter password. As some Web sites somewhat routinely require me to re-log in, I didn't think about this until the password failed, and I looked at the URL. It was 'iftwitter' etc., but otherwise used Twitter's design scheme, etc. Luckily for me, I was inputting the wrong password. Unluckily for me, that password is valid at certain other places. I've been on the Internet since the early 1990s. I know better. Sigh.

Meanwhile, yesterday I got the staples taken out of my belly. They were starting to hurt more than the incision, and their puncture wounds were becoming inflamed. Having thirty-two staples removed is like being jabbed in the belly with a hypodermic needle thirty-two times, with bonus points for the ones my skin had started to overgrow. Still, I feel a lot better.

Collapse )

Photos © 2013, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.