the_child

But still with the spoons… Some days I wipe out early and sleep long. As happened yesterday. It’s tied to how much I’ve done that day, and fairly specifically to how much driving I’ve done. For example, yesterday I had lunch with a friend on the southwest end of Portland (far from Nuevo Rancho Lake), then yesterday evening I drove the_child up to northeast part of town (also reasonably far from Nuevo Rancho Lake) for a long, late session with her eighth grade project mentor. By the time I got home around 7:45 I was staggeringly tired, and I was lights out at 8:15.

I’m not sure if the driving is the specific factor that exhausts me, or if it is just a proxy for my overall level of activity. Days when I stay home and lay low, I can stay up til 10:00 or so, sleep six or seven hours, and be fine. This is pretty close to my ordinary behavior when I am at baseline health. Days when I am out and about look a lot more like yesterday, with noticeable fatigue, early bedtimes and hard sleep.

And of course, because I feel fine, I rarely remember to take this fatigue into account. It’s not like while I was on chemo, when every spoon spent was painfully obvious. (For more on spoons, see here: [ jlake.com | LiveJournal ].) So I barrel through the days as if I’m healthy, then have a wipe out lottery in the evenings.

Still, a vast improvement. Still, annoying.

And on an unrelated note, last night I dreamt I was at a big potluck picnic with, among other people, daviddlevine. At one point I approached a cold case someone had set up filled with desserts. (It suspiciously resembled the dessert case at the Sellwood location of Papa Haydn’s.) Except that one of the items on display was a sort of box made of head cheese with pickled jalapeno inclusions among the organ meats. Small items of patisserie were in various compartments of the head cheese box. I could not even begin to imagine the point of that presentation, and was fairly grossed out about it.

Ah, my dreaming mind, such a lovely landscape it is.

I wanted “If you can read this, I have cancer again.” on the back of my head, where it would be covered up as my hair grew in once more. That way, the tattoo will be a marker if I have to do a third round of chemotherapy and lose my hair again. Otherwise it will be a crypto-tattoo, hidden by the hair that is a marker of my health and a signal of my self-image.

I’d been being a wimp about the pain, but in talking to my therapist a few days ago, I realized it was important to me to flip the bird to cancer in a big way. Instead I cheated, apply some EMLA to my scalp (topical anesthetic cream) and popping a Lorazepam to mellow me out. Also, at the last minute, I added one of each of my wrist symbols to the tattoo — the zodiacal sign for cancer, symbolizing my surgeries; and the biohazard glyph, symbolizing my chemotherapies.

mlerules and her friend E— took me in, as with a Lorazepam on board I wasn’t fit to drive, and besides which, I needed someone to do photo documentation. Here’s how it all went down….

Saran wrap to protect the EMLA on my scalp

The art for the tattoo — Note the symbols matching those on my wrist

Eric S. Quale at work on me

A closer shot of the same thing

Me showing off the finished product, note the tattoos on my left wrist

A close up view of the finished product

As usual, more at the Flickr set.

Photos © 2012, Joseph E. Lake, Jr. and Emily Siskin

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

the_child

Thankfully, this is Sunday and I am not heavily committed. Some work time on Sunspin, several errands, some homework time with the_child, but it’s all reasonably flexible.

Still, I’m wondering why. I finally got my sleep time dialed down to something within shouting distance of normal for me. I assume this is one of those ‘bubbles’, like I get after surgery, where for a day or so I revert to an earlier, weaker state. Grr. Wants our momentum, we does, preciousss.

mlerules

I am still debating whether to get the tattoo on the back of my skull. I don’t have any philosophical objection to what I’ve been considering, I’m just trying to decide how big a pain wimp I am. You’d think after all the surgeries, I’d be accustomed to this.

Anyway, some photos…

The Sea Tramp Tattoo shop its own self.

Me filling out the “I’m not drunk” release form.

Tattoo artist Eric Quale gearing up.

Me getting the ink.

The new ink, specifically the rightmost biohazard and zodiacal cancer icons.

As usual, more at the Flickr set.

Photos © 2012 Emily Siskin, reproduced with permission.

mlerules

In general, at the moment I feel pretty healthy. I’m not quite back to baseline, but I’m very close. That’s with me only about five and half weeks out of the FOLFIRI chemo series. This is a sharp contrast to the months of recovery time from the 2010 FOLFOX chemo series. I still struggle a little bit with fatigue and sleep issues, and my lower GI is even more eccentric than usual, but that’s about it. Given that my next CT scan is in two and half weeks, I’m just enjoying what I have right now, and hoping not to be plunged back into the medical mixmaster right away.

After the ink, and probably lunch out, I’ll be hanging with the_child this afternoon. Late in the day, I may go visit a friend who just got sprung from the hospital, if they’re up to company. And there will be some Sunspin revisions at some point. That’s what’s going on.

You can imagine my profound relief. It doesn’t really matter if this story is good or not — well of course it does, of course, but not in this context. It matters that I wrote and finished it. I started last Monday, and seven days later on Sunday I was done. With two days off along the way.

I produced it, start to finish, at a respectable rate of output, and I like it.

This is me, back on the horse, and the horse continues.

The manuscript is out to first readers now. I’ll have to find some time to revise sometime in the next few weeks. But tomorrow, or possibly Tuesday, I’m on to Sunspin revisions. (As it happens, the_child has a basketball game tomorrow, which is why I may have to wait til Tuesday to get going.)

This is who I am. A writer, writing. Damn, am I glad to be back.

People tell me I look good bald. I’ll accept that, but it’s not my preferred look. I liked my waist length blonde hair. It was a terrific way for me to express my moods, flirt, be sensual, be casual, whatever. I liked the way it looked and the message it sent.

Because, see, bald is the wrong cultural messaging for me. I’m not a biker, I’m not a skinhead, I’m not a hipster. I’m a guy who is happy to show off his non-receding hairline and lack of male pattern baldness. I’m a guy who likes having his hair stroked and played with. Hard to do that with no hair.

And I was very much reminded of this as I traveled yesterday. I mean, these days I look like a plastic Jesus left on the dashboard to melt. I’m still thinner-than-looks-right in the face from the chemo weight loss. I have a wispy white beard that would embarrass a corpse, because all the blonde and brown and gray fell out, but the white stuck around. And I am bowling ball bald still. I can’t smile and do the hair flip. I suspect I just look creepy when I try.

I want my hair back.

(This whiny-ass rant brought to you by a day of travel and self-reflection.)

scarlettina

I don’t find this one real hard to pick apart, and if it wasn’t so amusing (to me, at least), it would be rather creepy. Well, I suppose the dream is creepy regardless of whether I find it amusing. It’s not hard to see my anxieties about cancer and my medical experiences in this. And notion of being sent back to the hospital with no way to communicate, for a long period of time. Not unlike being in surgical recovery, for example. Luckily, both Shanna and scarlettina are dear friends in real life, and I don’t have to actually worry about them being medical malefactors or otherwise bedeviling my existence.

In other news, my writing mind seems to be waking up. I hope to be back on fiction next week, writing a requested novelette before diving back into Sunspin. If it doesn’t happen right away, I’m okay with that, but the ice is definitely breaking. This will be me, restored to my identity.

If you don’t mind a follow-up question to your post – it seems like you’ve identified a new definition of “win” in regards to your cancer? Can you talk a bit more about how you came to that new definition (if so) and how, if at all, that changes your emotional experience?

Well, my doctors and I are still aiming for a full cure, but the odds of that keep falling. My own emotional and personal convictions have shifted entirely to the negative as I’ve discussed again recently [ jlake.com | LiveJournal ]. I don’t expect to live to be old. I’ll be surprised to live to be 50 at this point. Medical science hasn’t given up on curing me, but in effect, I have.

So “winning” for me has stopped meaning a return to full health. That would be double bonus lottery winning, to return to health. “Winning” for me now is living long enough to do the things that are important to me. What those things are will move and change over time, as I continue to live. When I fall ill, especially whenever it is a terminal event as I believe it will be sooner or later, those things will contract along with my life, until my last ambition and final victory will be a graceful farewell.

I came to this definition as a result of my loss of optimism, my loss of my sense of the future. I’m not depressed by this realization. It’s just a fact of my existence. I’d be delighted to be proven wrong, but I don’t expect it. So, acknowledging my own sense of reality, I redefined winning.

Does it change my emotional experience? As I said, I don’t think my existing cancer-related depression has been exacerbated by my attitude. I think it does render me more melancholy than I might otherwise be, but that seems natural. As my therapist has said, I walk every day with death on my shoulder. Looking at death, I try to make my goals and ambitions achievable even within his shadow. It’s the ultimate form of living within the moment.

That’s my new definition of winning.

For 2012, if I can stay out of the oncology unit, I plan to write the other 400,000 words of Sunspin, revise the first two volumes for submittal and publication, and write several requested novellas and short stories. […] Even if I do go back into cancer treatment, experience shows I can still be reasonably productive. If I metastasize yet again, I still plan to write another 100,000 words of Sunspin, as well as revise the first two volumes and write the requested short fiction.

That’s pretty much it in a nutshell. If my health permits, I’ll finish the first draft of the entire Sunspin cycle. By way of official news regarding that project, my agent and I have redivided it from three books to four for reasons of length. The titles now are:

Calamity of So Long a Life
Their Currents Turn Awry
The Whips and Scorns of Time
Be All Our Sins Remembered

Their Currents Turn Awry is the new title, and is now book two between the previously announced titles Calamity of So Long a Life and The Whips and Scorns of Time.

Also in Sunspin news, Subterranean Online will this year be publishing my novella “The Weight of History, the Lightness of the Future”, which is essentially chapter zero of Calamity of So Long a Life. So if you’re interested in this project, watch for that.

My more detailed 2012 plan for writing is as follows:

That will put revisions and submittal for The Whips and Scorns of Time and Be All Our Sins Remembered in early 2013, and then I’ll be done with the cycle and free to move on to other projects.

The huge open question is whether I go back into treatment this year. The gap between conclusion of my last chemotherapy sequence and the detection of the next metastasis was nine months. If I can squeeze out a year, all of the above will happen. Even if the worst happens and we find a new metastasis in February, at my next scan, I’ll still get the work through March done for certain, and probably manage the work planned through June, though it may take me several months longer to reach those goals, if I have to take time off for surgery or whatever. So at a minimum, I’ll get Calamity of So Long a Life out and Their Currents Turn Awry written and revised, even if illness forces me to push drafting The Whips and Scorns of Time and Be All Our Sins Remembered into 2013.

In a larger sense, I figure these days I’m about one to two years from dying at any given point depending on my next diagnosis. More swiftly, of course, of the cancer comes back in an inoperable location or otherwise excessively troublesome. So when I look down the road, at other projects such as Original Destiny, Manifest Sin, it’s with a less confident eye than I used to have. I figure my long-term goals beyond Sunspin aren’t so much goals as hopes. Here are the benchmarks, things I’m looking forward to living to see if I can manage it.

December, 2012 —	The Hobbit part one released
December, 2013 —	The Hobbit part two released
June, 2016 —	the_child graduates from high school

If I make it alive and in some form of health to June, 2016, I will have won. That much time grants me my daughter’s entrance into adulthood, and lets me see her start her own life. That much time grants me as many as five or six more books, at a minimum four more even if I spend much of the intervening years in treatment. And it lets me go back to Peter Jackson’s Middle Earth twice more.

And, well, if I don’t make it that far, I’ll spend as much time as I can with the_child and write as many books as I can.

Thinking about it in those terms both focuses and trivializes my 2012 goals. Perhaps you can see how my thinking is bent as time passes. But this is the life I’m leading, and I’ll do the best I can.