A Different Kind of Writing

a.k.a. I'm still here. :-)

I was diagnosed with breast cancer in March 2014 and completed active treatment (surgery/chemo/radiation) in December. Initially I detailed my experience in a friends-only blog on Prosebox and then began a new blog on Cancer Survivors Network. I'm also most active on What Next (which, like CSN, is sponsored by the American Cancer Society) and Breast Cancer Social Media (#BCSM on Twitter).

Diagnosis meant immersion. Suddenly I was in another country (called Cancerland by some). I was and still am learning a new language, new rituals and customs, even new holidays. I had joined a tribe that no one wants to join.

I also became my own research subject in an experiment with an N of one. My side effects logs fill a three-ring binder. I ran observations and number-crunched my results. Compiling my first side effects report for my oncologist proved the highlight of my first week of chemo, keeping me engaged when my body and brain could do little else.

At no time did I feel depressed; that surprised me, too. Instead I went in swinging, though from the outside I may have simply looked exhausted. Physically, I often was. Psychologically, I was fully engaged, facing down the disease with an epic music soundtrack that played in my head through earbuds or from memory.

I did not write fiction. I did not write poetry. Meditating with Sharpies and then with digital art gave me the outlet I needed along with blogging my experience.


(Drawn on the day of my diagnosis.)


(Drawn using Art Rage after I had completed four infusion cycles of chemotherapy drugs Adriamycin and Cytoxan and before I began twelve cycles of Taxol.)

My reading as well turned away from fiction and focused instead on cancer blogs and research. My body was under attack, and in the interest of long-term beneficial outcomes I was subjecting it to poisons and no small degree of risk.

With the exception of passively watching TV shows on my computer I had no desire to escape into invented story lines or characters. I invested my mental and physical energies in grappling with my adversary and then used art/meditation to replenish my strength, especially since my caregiving did not stop for cancer.


(Uses a self-portrait (taken on July 7, 2014), my shot of the Full Pink Moon from April 6, 2012 (taken on the same night as this shot), and my shot of a Tree Nymph taken at the Florida Museum of Natural History and Butterfly Rainforest in Gainesville on May 2, 2011.)

I also exercised and ate healthy foods throughout, which I believe helped me through treatment. I did some physical activity even on my toughest chemo days.

As we begin 2015 I am on pills for at least five and likely ten years to thwart recurrence. In addition to continuing my aerobic activity I have returned to planks and strength training, especially because osteoporosis is one possible side effect of the pills.

I celebrate the little things -- my slowly returning hair, my switch from extra soft back to soft toothbrush, my quick healing from radiation's burns and blisters. Mild vertigo from chemo persists; I still need to be a bit cautious when getting out of bed. But, all told, I have come pretty well through what I continue to call a perilous adventure.

May the New Year be kinder to us all.

To read the details: CSN blog main page

Index to entries in 2014:
Pre-Diagnosis: February 2014 ("Well, This is Different" and "Day 1 Post-Biopsy")
March 2014: Diagnosis and Preparation for Consult ("It's Clobberin' Time!" and "Preparations")
March 2014: Consult and Preparation for Surgery ("'Twas the Night Before Consult" and "T Minus 3 Days to Surgery")
March and April 2014: Surgery and Preparation for Chemo ("Day After Surgery" and "The Next Phase")
April and May 2014: Preparation for Chemo ("Preparations" and "Stuff Just Got Real")
Early May 2014: More Prep for Chemo ("The Fine Art of Negotiation" and "Errand Day")
Early May 2014: Chemo Prep and Getting My Port ("T Minus 4 Days to Chemo" and "Port of Call")
Early May 2014: Chemo Begins ("Chemo, Day One" and "Well, Duh")
Mid-May 2014: Chemo Side Effects ("Somnolescence" and "Almost at Baseline -- For Now")
Attitude
Countdown
Make It Rain
Chemo Warriors
June
Yes, We Have Too Many Bananas (number-crunching kvetch edition)
Countdown to Third Infusion
Trends and Mysteries
Sleuthing
July
Milestones
Goodbye, A/C. Hello, T!
Celebrating the Supermoon
Fable
August
Fierce
Chemo Countdown Begins!
Nine to Go!
Watching the Bloodwork
September
Genetics
Pumping Iron/Genetics, Part 2
Pumping Iron, Part 2/Ruminations
Masked Marvel
Whew!
October
Sleepytime
Shufflin' Off With Buffalo/An Adventurous Week
The Next Phase
Morning Person
Milestones
November
Three Weeks Down
Four Weeks Down
Five Weeks Down/Eight Treatments to Go!
Home Stretch
December
Rite of Passage
Body and Mind
Healing
Gifts

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Recent Work

My digital collage "Sunset Flight" is in the Second Annual Caregiving Art Show, up through September 15, 2012. The art show benefits Caregiving.com and its CareGifters Program, which provides small grants to caregivers in need.

All butterflies except for the one at lower right (photographed here) are taken from my Florida Museum of Natural History and Butterfly Rainforest photoset. The statue comes from this photograph. I photographed the sunset here.

My photography also appears in two CareGifters series books: Comedy:



and Forgiveness, including the cover image:



Proceeds from the sale of the CareGifters books benefit the CareGifters Program. Ebooks are just $5.

The longest poem I've written to date (a glosa cycle of 300+ lines) has come out in The Fifth Di... 14(3):



You can read "Last Rites" here.

My poem "Attack of the Giant Spiders" appears in Eye To The Telescope #5 (LGBTQ Speculative Poetry, edited by Stephen M. Wilson). Poems "When Zombies Go Steady" and "The Bot's Dilemma, Upon the Death of Earth" appear in ETTT #4 (Speculative Poetry in Form, edited by Lester Smith).



"The Last Dragon Slayer," which originally appeared in Mythic Delirium #24, was a 2012 Rhysling Award nominee, appearing in this year's anthology.



Two of my poems appear in Exploring the Cosmos: minimalist science poetry. Both were originally posted on my blog: "Partial Solar Eclipse" and "Grand Raiment."



Exploring the Cosmos is a trifold sampler provided by the Science Fiction Poetry Association. You can download a .pdf of this and more samplers here.

Elissa Malcohn's Deviations and Other JourneysPromote Your Page Too Vol. 1, Deviations: Covenant (2nd Ed.), Vol. 2, Deviations: Appetite, Vol. 3, Deviations: Destiny, Vol. 4, Deviations: Bloodlines, Vol. 5, Deviations: TelZodo, Vol. 6 and conclusion: Deviations: Second Covenant.Free downloads at the Deviations website (click here for alternate link), Smashwords, and Manybooks. Proud participant, Operation E-Book Drop (provides free e-books to personnel serving overseas. Logo from the imagination and graphic artistry of K.A. M'Lady & P.M. Dittman); Books For Soldiers (ships books and more to deployed military members of the U.S. armed forces); and Shadow Forest Authors (a fellowship of authors and supporters for charity, with a focus on literacy). This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

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On January 18, 2012

Several sites (including reddit, Wikipedia, Mozilla, Failblog and the rest of the Cheezburger Network, and BoingBoing) are blacking out tomorrow. I will be off social media.

Here's why:

SOPA blockout countdown clock (with link to "Stop SOPA, The Essentials Summary And Bill Text" via @YourAnonNews and video "A call to action for webmasters around the world"

"The day the internet fought back: Anonymous, SOPA & the Battle for Free Speech" (some language NSFW)

"SOPA Blackout Set For January 18th: Here’s All The Info" (WebProNews)

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(Link to) Year-End Writin' Round-Up

Click here for the full 2011 retrospective!

Elissa Malcohn's Deviations and Other JourneysPromote Your Page Too Vol. 1, Deviations: Covenant (2nd Ed.), Vol. 2, Deviations: Appetite, Vol. 3, Deviations: Destiny, Vol. 4, Deviations: Bloodlines, Vol. 5, Deviations: TelZodo, Vol. 6 and conclusion: Deviations: Second Covenant.Free downloads at the Deviations website (click here for alternate link), Smashwords, and Manybooks. Proud participant, Operation E-Book Drop (provides free e-books to personnel serving overseas. Logo from the imagination and graphic artistry of K.A. M'Lady & P.M. Dittman); Books For Soldiers (ships books and more to deployed military members of the U.S. armed forces); and Shadow Forest Authors (a fellowship of authors and supporters for charity, with a focus on literacy). This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

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NaNo Update: The Next Phase

I've been validated!

After a roughly 26-hour writing marathon at the end of a fevered-pace weekend (with a 2,900-word count average over the past six days) , I have crossed the NaNoWriMo finish line. Word count by their validator: 50,255 words. According to my Word program, the total is 51,649, a 1,394-word discrepancy. I'll bet it's the footnotes.

I have a lot of footnotes.

According to my Word program, I had crossed the NaNo finish line about 5-1/2 hours earlier than the site's reckoning. What with NaNo's pace, the draft is already very rough, and that roughness doesn't compare with what I had slapped together in those last hours.

My NaNo is effectively over, but my work is far from done. How far?

1. The #SciFund Challenge runs through December 15, and I will continue to cover it in realtime. The #SciFund story -- part of what attracted me to this project is because #SciFund is a story -- is more than the event itself. It's more than a fabulous community of scientists who have bonded with each other -- and with non-scientists -- around the globe, in a way that transforms everyone involved (including me!).

The event has added a new layer to already-existing discussions concerning crowdfunding in general, science funding in general (both within the US and internationally), open access to research, and the state of science, period. And I'm just touching on the main points.

I am personally fascinated -- awed, frankly -- by the interplay of layers I'm seeing. By the way in which the human interest stories of individuals are getting folded into something very, very big that is happening across monetary, academic, technical, and political landscapes. And by the way those relatively tiny but powerful human interest stories are affecting those massive landscapes. It has literally taken my breath away.

That's the kind of material that is part of my ongoing process of discovery. The scope of my project has shifted from what I had first envisioned, much the way in which the dorsal fin shifts on the male spinner dolphins that Matthew Leslie is studying, where it's hypothesized that one edge of the fin grows while the other edge stops growing. When I had started this writing, I had expected to grow one "edge" of the story, but another "edge" has been growing instead, with #SciFund remaining the central focus.

2. I am also dealing with the laws of physics (or at least the laws of coffee-saturated biology). My breaking the 50,000-word barrier doesn't mean that I am up to date in assembling the data I've been collecting. My draft narrative currently runs through November 23. That means I've got five days of #SciFund-related events that I haven't even touched yet, beyond grabbing info off the Web. Before my six-day frenzy I had been running a good ten days behind. And I know I'm missing a lot that's out there, including conceptually. When the #SciFund experiment ends its crowdfunding phase on Dec. 15, I will still likely have days worth of data to process. And that's just for the realtime narrative part.

3. I have concentrated on Archie-writing rather than Michael-writing. Put another way, I have concentrated on the realtime narrative material rather than on material devoted solely to the projects themselves. Those project narratives are important to the draft, but they can be done later because the material there is relatively static. The realtime narrative is dynamic, meaning that it can get away from me if I don't keep up with it.

That still leaves me with a lot to write. However, it's material that will wait for me.

4. Good old-fashioned editing. My draft is slapdash. It's like an underpainting, with basic shapes and colors and the relationships established between forms and angles. It's missing a lot of nuance. It likely contains unnecessary repetitions and some gaping holes. And the narrative itself is choppy, with edges that need smoothing, and bridges that I need to build between sections.

All that said, watching this amazing event unfold has been and continues to be a privilege. (Want to be a Science Santa? Here's a taste!)

Meanwhile, I've had my five-hour nap following my writing marathon. I've lived the "NaNo lifestyle": holed up at home, not getting dressed, eating out of cans, and watching with increasing alarm the level in my one remaining coffee bag decrease. I have not yet seen the movie The Road to Perdition, but I had found Thomas Newman's gorgeous score, which had fueled my last-push marathon after I had spent Sunday night listening to Hearts of Space.

There are errands in my near future. And a shower. Not in that order.

And then -- back to the story.



Elissa Malcohn's Deviations and Other JourneysPromote Your Page Too Vol. 1, Deviations: Covenant (2nd Ed.), Vol. 2, Deviations: Appetite, Vol. 3, Deviations: Destiny, Vol. 4, Deviations: Bloodlines, Vol. 5, Deviations: TelZodo, Vol. 6 and conclusion: Deviations: Second Covenant.Free downloads at the Deviations website (click here for alternate link), Smashwords, and Manybooks. Proud participant, Operation E-Book Drop (provides free e-books to personnel serving overseas. Logo from the imagination and graphic artistry of K.A. M'Lady & P.M. Dittman); Books For Soldiers (ships books and more to deployed military members of the U.S. armed forces); and Shadow Forest Authors (a fellowship of authors and supporters for charity, with a focus on literacy). This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

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NaNo Update: Science Santa!

My NaNoWriMo word count reached 39,260 as Thanksgiving ticked over into Black Friday. Almost up to par.

And my Rocket Hub dashboard shows that I've funded four #SciFund projects, but there are more. The discrepancy has to do with my credit card company putting a freeze on my account because, well, they weren't used to seeing me click on the same kind of button that many times. So far as I know, that end of it has been resolved. Once the rest follows, I'll resume my holiday shopping!

Really, go check out the projects. If you want to inspire someone's scientific curiosity, here's your chance to touch base with researchers working on the front lines, doing innovative stuff. And as much as I love the companies from which I've bought things like our little Astroscan telescope, or the gyroscope I photographed for my chapbook of science poems, those things are mass-produced, ready-made products.

They're neat and all that, but they're not personal.

Every thank-you written on a postcard -- from places like St. Petersburg (in Russia, not Florida!) or South Africa or French Polynesia or Tel-Aviv -- or on a Gingko leaf (as Goethe used to do, when writing to his close friends) -- is unique. Every sample of data -- an autographed copy of a notebook page or handwritten mathematics from the research or handwritten field notes -- is a small piece in a grand adventure.

Want a paperweight or jewelry made from a cast-off crayfish claw? How about an alligator foot mold? Or a personalized Roman skull card? How about a bottle of wine that you can't get in any liquor store? Or a T-shirt print in high-res, living color of two algae in flagrante delicto? (Look at this picture; it's gorgeous. If you didn't know ahead of time, would you know what it was? Need a good guessing game for the holidays?) How about a unique DNA sequence from an animal being studied in the field? How about having a specimen named after you?

How about unique, woodturned art made by the scientist? Or a replica of models used in flow tank studies? How about stationery made from elephant poo? Or an acknowledgement in a presentation? Or a personalized kit for doing your own experiment? (Acknowledgements, copies of the research, and special access to progress reports are shared by several projects. Several high-end gifts include personal presentations and field tours.)

Holiday stress wearing you out? There's a virtual rainforest experience for that.

The swag is great in and of itself and there's something for every budget (I haven't covered all the projects here, not even close), but that's just one layer of the magic.

Back in December 2006, I had volunteered at a paleontological dig here in Florida, called the Tapir Challenge. Part 4 of my 4-part report is here, with a photo of the sea urchin spine I'd found. It had nothing to do with what we were looking for, but I was told that the quarry where we worked was full of them.

Then I was told I could take it home with me. And then I was told that it was probably 30 to 40 million years old. I was holding it in the palm of my hand. (Never mind that I had burned much older fossil fuels to get to the dig site. That was different.)

If someone my age gets all goose-pimply from that, imagine what a kid would feel. Now imagine a kid holding a souvenir from fresh, spanking, brand new science in the making, from a researcher who's breaking new ground.

But what about scientific inquiries that come to dead ends, as many do?

I could bust open a mess of incandescent light bulbs and pull out a filament like the one that had finally worked for Edison. I think of all the incandescent light bulbs in the world, especially prior to the changeover to fluorescents.

But what about the filament designs that didn't work? How common are those light bulbs now? Moreover, those filaments had been Edison's teachers. So had his early inventions, including his vote-recording machine, a disaster for being too far ahead of its time. When he lost the faith of his investors and his own funding was in peril, those failures had driven him on.

That makes them magic, too. Regardless of an experiment's outcome, it advances knowledge. That makes it pioneering work.

Speaking of thank-you letters from scientists...



Oh, wait -- Edison was a success by then. How about this one?



It reads, "Your favor of the 19th was duly received. The megaphone is not yet completed and I am quite unable to say when it will be as at present I am busily engaged on the electric light."

Who knew?

Who knows?

Want a taste of what Edison's passion and dogged determination felt like in the face of unknowns and uncertainties?

Here's your chance.

Elissa Malcohn's Deviations and Other JourneysPromote Your Page Too Vol. 1, Deviations: Covenant (2nd Ed.), Vol. 2, Deviations: Appetite, Vol. 3, Deviations: Destiny, Vol. 4, Deviations: Bloodlines, Vol. 5, Deviations: TelZodo, Vol. 6 and conclusion: Deviations: Second Covenant.Free downloads at the Deviations website (click here for alternate link), Smashwords, and Manybooks. Proud participant, Operation E-Book Drop (provides free e-books to personnel serving overseas. Logo from the imagination and graphic artistry of K.A. M'Lady & P.M. Dittman); Books For Soldiers (ships books and more to deployed military members of the U.S. armed forces); and Shadow Forest Authors (a fellowship of authors and supporters for charity, with a focus on literacy). This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

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NaNo Update: The Best of Both Worlds

Heading out of Day 21 of both NaNoWriMo and the #SciFund Challenge, my word count stands at a rather pretty 33,399. I had dropped behind the desired NaNo pace during my days of modem slowdown-death.

I'm still behind par. My daily word count currently averages 1,590 rather than the 1,667 intended to produce a 50,000-word opus by month's end.

I'm not worried. First, because meeting the 50,000-word goal by the end of November 30 is the NaNo thing to do, but it's not crucial. Second, while some other writers may be celebrating their post-NaNo collapse on December 1, I'll still be going strong. I'll still be on the #SciFund timetable, which goes through December 15.

Third, because for me it's not a question of word count. It's a question of processing all the data that comes in. I'm still catching up on that end.

And fourth, because I'm not really the author here.

You heard me.

I'm the assembler.

When I talk about "the best of both worlds," I don't refer to NaNo and #SciFund. I refer to two of my creative activities: writing and mixed-media art, specifically collage and assemblage.

Back in the early "aughts" -- roughly 2000 through 2003 -- I wasn't writing, at least not for submission. I was working steady multiple shifts and my brain was too fried for worldbuilding. I saved my creative sanity by picking up odd things -- shells, broken crockery, dropped pigeon feathers, pieces of broken mirror off the sidewalk -- and fiddling with them, to make them juxtapose with each other in interesting ways.

Put another way, I was playing. Like this:



This piece, "Totem," is made from a folding closet door that measured 1x7 feet. The door had been left on the curb for trash and had a hole seemingly kicked into it. I turned the door upside-down and transformed the hole into a bird's nest, housing three paper pulp baby birds in a combination of white pigeon fluff and shed cat fur. Mama bird is a pulp sculpture stuck with adult pigeon feathers. The mirror pieces in the sun/moon combination came from the curb as well.

The rest is sculpted pulp made from more than a ream's worth of discarded office paper that I mixed with gesso and then painted. I had built thick "branches" up from the wood, whacking them with a plastic knife to create the rough texture of bark. (I took this photo before my "good camera" days. It's lacking in detail and doesn't show the piece's true three-dimensionality.)

A friend and neighbor had told me that whenever she visited the cafe where this piece was on exhibit, her toddler son went over to the sculpture and kissed the lizard. (Best compliment for my artwork I've ever gotten.) I subsequently made him his own lizard and then gave "Totem" to his mother before Mary and I moved to Florida -- whose high heat and humidity discourages this kind of sculpting. Pulped paper mixed with gesso is heaven on earth for mold.

So, what does this have to do with my NaNo project and with having the best of both worlds?

One, I'm writing, which is something I'm passionate about. And two, I'm doing the writing equivalent of collecting interesting things and putting them together in what I hope are interesting ways.

In a way, it's like what Aditya Rao is doing with his Chlamydomonas cilia. Each cilium -- think of it as a microscopic hair -- has more than three thousand genetic puzzle pieces. Rao is studying how two very important pieces fit together.

In his puzzle, the pieces have to fit just right or nasty diseases can occur.

In my puzzle -- some of whose pieces come from his project -- I get to make up where the pieces go. I get to play with their shapes a little bit, the way I've done with my mixed-media art. In my puzzle, the pieces are ready-made, but the puzzle itself isn't. Because I'm the one making the puzzle.

In my mixed-media days, I took regular walks to Dorchester Bay in Boston and combed the beach for puzzle pieces like broken ceramic and glass worn smooth by the sea. Or I patrolled my neighborhood the night before trash day. Honestly, Dorchester had awesome trash.

These days, I turn my computer on and comb the Web for #SciFund puzzle pieces. I collect a bunch of them, just as I had filled my tote bag with a bunch of stuff from the beach or from the curb back in Dorchester.

And then I cull. What fits? What doesn't fit? What two pieces need a verbal bridge to connect them? What do I set aside for later? What new development gets a little line inserted earlier in the draft as a bit of foreshadowing? What gets left behind as redundant-redundant? What do I use to shift from one tone to another? What do I earmark as "needs more data?" What do I highlight, to see if any follow-up occurs?

Much of what I do is not actual writing. It's moving the pieces around. The writing part comes in shaping and connecting, and in the occasional commentary, when I feel the need to put in my own two shekels.

Seen in another way, this project is like putting together a found poem. Except that it's a found book. And the book is still being written. Not by me, but by dozens of people.

I'm just the one combing the beach.

Elissa Malcohn's Deviations and Other JourneysPromote Your Page Too Vol. 1, Deviations: Covenant (2nd Ed.), Vol. 2, Deviations: Appetite, Vol. 3, Deviations: Destiny, Vol. 4, Deviations: Bloodlines, Vol. 5, Deviations: TelZodo, Vol. 6 and conclusion: Deviations: Second Covenant.Free downloads at the Deviations website (click here for alternate link), Smashwords, and Manybooks. Proud participant, Operation E-Book Drop (provides free e-books to personnel serving overseas. Logo from the imagination and graphic artistry of K.A. M'Lady & P.M. Dittman); Books For Soldiers (ships books and more to deployed military members of the U.S. armed forces); and Shadow Forest Authors (a fellowship of authors and supporters for charity, with a focus on literacy). This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

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