Archive for Cancer
I slept six hours last night, woke up rested at 4 am, went for a brisk half hour walk, saw a shooting star, came home and weighed in at 239.6.
None of those things would have been true before I got sick.
First and foremost, lasirenadolce. I literally owe her my life, given how touch-and-go that first night was going to the ER. She then stood by me through the worst experiences of my life, every step of the way.
Right with her were other friends, including karindira and kenscholes. My family, all of them, my aunts who flew in, my parents who waited by my bed, lillypond, the Niece, Mother of the Child, and most importantly, the_child.
My doctors and nurses and all the people at OHSU. My entire online and professional communities (that’s you guys), with a special shoutout to neutronjockey and all his co-conspirators for the tribute anthology, which I will always treasure. The Fireside writers group. casacorona and Tor Books. John Scalzi and Audible.com.
The list is endless, and I could never fill it completely.
Thanks to you guys, each and every one of you, I slept six hours last night, woke up rested at 4 am, went for a brisk half hour walk, saw a shooting star, came home and weighed in at 239.6. Best of all, I’m still here.
By and large, I am much better these days. The antibiotic course has been effective, within the context of the usual unpleasantnesses. The surgical seam is nicely healed, though I feel it when I am very tired. I haven’t been aware of the internal seam in a while.
Still, I stop and think about this often. Sometimes for a moment, sometimes for quite a while. And today I realized cancer has given me a number of gifts.
I am far more in touch with my body these days than ever before. (You! In the back! Quit snickering! This is a family blog.) My comprehension of the immediate and longer term consequences of things like dietary choices, activity choices, resting time and so forth is much stronger than before. My recent cholesterol workup was the best I’ve ever had. I weigh less than I have since I left college.
I am much more thoughtful about how I spend my time. I’m a lot more ruthless in declining events, opportunities, even people. This feels selfish to me, but it also feels like much better self-care.
I am much more careful with how I spend my energy. I take more breaks, more downtime, am not trying to paint my schedule wall-to-wall.
Even better, I’m pretty sure I’ve got enough of a handle on those issues not to go back to my old defaults. At the least, I’m going to work at it.
I wouldn’t wish my path to these gifts on anyone, but they’re clearly things I needed to hear and understand. Cancer brought me to my knees and bent to my ear and whispered to me that I should be mindful of what I spent my life on. And so I am trying to be.
Sometimes you come back from an edge you didn’t know you were standing on. I finished novella “In the Forests of the Night” almost a week ago. That’s the first major piece of new fiction I’ve written since the cancer diagnosis. It was difficult to write for reasons which aren’t clear to me yet, but not onerously so.
I sent the story to the first readers and to the editor. I’ve heard back from various quarters that is works well. It wasn’t until I heard back that I realized I’d been holding my figurative breath — waiting to see if I’d Lost It to my disease.
This is utterly non-rational, and I didn’t know I’d been doing it, but I felt like I’d passed a very important gateway. Fred did not live inside my tumor, or my sigmoid colon. He lives inside my head. Which I’ve always known, but the brain-spoon has been stirring so much lately.
I’m so relieved that I think I’ll go write something else!
Back from the doctor, dipping into the blogosphere for a moment before I return to work. Basically, we did some post-op baselining on glucose and lipids (which represent my most significant non-cancer health risks based on family history.) Glucose level was decently below the pre-diabetic threshold. Cholesterol was the best result I’ve had in eight years with this clinic. Also, my morning dry weight was back below 250 this morning.
I think I’m kicking everything’s ass. Now to work on stabilizing weight and not getting silly with diet, once the lower GI problem clears. I may never play the violin again, but it looks like I’m going to live a long time yet.
In no particular order:
On the second flight yesterday, I went back to the sudoku. I worked it slowly and carefully, and managed the basic and intermediate puzzles with only a few correctable errors. The advanced puzzle still defeated me. As goulo has pointed out to me, that could be an issue of practice as much as an issue of cognitive capacity.
Coconut flakes, soy yogurt and fresh fruit have been procured for breakfast and snacks. It’s a weird combination to be eating, and so far the soy yogurt tastes like hell to me. I will be seeking out fresh vegetables and white meat at lunch and dinner to balance this out.
Additional minor medical TMI under cut for reader mercy: (more…)
On boarding the plane, I tugged out the inflight magazine. Normally I can kick airline sudoku puzzles sidewise in a couple of minutes. I’m not a speed champ, but those things are very accessible to me. I haven’t touched one since the surgery, not even at home.
Nothing. Nada. Zip. I blew the “Easy” puzzle pretty quickly, to the degree I couldn’t untangle it. (I have long worked them in pen, without any of the little “hint notes” you’re supposed to use … pre-op, I could keep all the logic and conditionals going in my head without difficulty and only mark the definitive answers.) It felt like something I knew I was supposed to be able to do — I explained the rules to my seatmate, in fact. But actually doing it? No dice.
So I flipped to the crossword, and managed to rail through that like butter on a stove top. That part of my brain is working well. Which helped keep me from getting depressed about the sudoku, thankfully. And given what I do for a living, it’s just as well the lexical processors are firing on all tubes.
Then I read an actual book; Pavane by Keith Roberts. Or most of it, at any rate. This is the first new piece of long form print I’ve tackled since before the surgery. (I’ve been working on The Alchemy of Stone, but I was already into it before I got sick.) And that part of my brain is working as well, thank Ghu.
So the puzzle pieces continue to return to the table. But it’s still very weird, and discouraging, to simply not be able to do something at which I ordinarily consider myself adept.
One thing I haven’t talked much about here is the emotional journey cancer has put me on. Partially that’s because I don’t yet understand it myself, and partially because I didn’t want to go fishing for the classic online group hug. Don’t get me wrong — all the incredible support I’ve received from LJ and online community has been invaluable to me. But I wanted to say something meaningful if I was going to say anything at all.
The night of May 7th, two days before my surgery, a number of friends and family gathered in a back room at DeNicola’s for a celebratory meal. It felt like my wake, though I think I maintained pretty well. The night of May 8th, having been on Fleet all day and as result finding myself achingly empty, my family again gathered at my house to keep me company. It felt like my funeral, and I maintained quite poorly.
Simply put, I did not expect to wake up from the surgery.
This was not a logical conclusion based on medical information, it was an emotional reaction to the whole situation. By then we had a pretty good idea the cancer was likely to be early stage, and the effects limited. I had absolute confidence in my colo-rectal surgeon. I had immense amounts of information, courtesy of an entire network of friends and family who are research geeks, most especially lasirenadolce. I knew the outcomes and the risks, I’d been through a lengthy informed consent process.
I still believed I was going to die.
I lied to everyone, including myself, about how terrified I was. I don’t suppose anyone was fooled, least of all me, but I lied and lied and lied in an attempt to alchemically transform my bravado into real bravery. The next morning, leaving the surgery prep unit with the anesthesiologist and his assistant, the fear caught up with me. I’d been cracking wise during the admission process, but I sobbed uncontrollably as the gurney wheeled through the halls of OHSU. I was possessed with a black, raging fear tinged with the grief of never again seeing my daughter, my parents, anyone I loved.
Waking up that afternoon was one of the most surprising things that has ever happened to me.
That a surgical cure had apparently been effected was almost beside the point. I lived. My body had more lines in it than a power station, I was miserably uncomfortable, a million things were wrong, but I lived.
Since then I’ve spent an enormous amount of time in my head. Much of it was drug-addled, but in a lateral way, not in the sense of being utterly stoned and trying to fly off the roof. Still, looking within is not a normal occupation of mine. One reason I generally move so fast through life is it keeps me ahead of the wavefront of self-doubt. My nigh pathologic extroversion was turned in on itself.
At the same time, only now am I starting not to feel crazy. The mental lacunae, the stuttering memory, the vile temper — I have hated the world and everyone in it since the surgery, most of all myself — I have sufficient external perspective to recognize these things as artefacts of the illness, the surgery, the anesthesia, and the post-operative medications. Still I’ve had to struggle through them, being some other person of very limited physical and mental energy. Querelous, unhappy, barely capable.
It’s a hell of a thing to face when you live your life on fast forward, as I do.
This stuff is very hard to talk about. Even the cancer itself is difficult enough, that disease being such a swear word. The slide into emotional instability, depression, cognitive dysfunction and memory loss is deeply embarrassing, and very difficult to live with.
I still don’t know what that time will come to mean for me, but it has put me in a very different frame of mind about my life choices, about my writing career, about the speed at which I live. However the cards fall in the end, it will be a very different game.
All is growth, all is grist, but that can be very hard to perceive from inside the clouds of unknowing. Only now am I beginning to glimpse the light.
After a fairly miserable weekend, sleep-wise, last night was probably my best night’s sleep since going off intensive post-operative medication. Ie, my best night of normal sleep since April. It was also the first night since April I’ve been able to sleep on my side in my more-or-less normal sleeping posture.
Coincidence? I think not.
I also have discovered that staying off fried foods, white flour, heavy starches, beef and excessive dairy considerably eases my affaires de colon. This is not the least bit surprising, but I’m in the position now where my appetite and cravings are in a serious mismatch with what my body will actually handle, thus requiring some active mental effort to manage this issue. I’m also eating considerably less food volume than my pre-op norms, so my weight has slid down a bit.
So after a day of careful eating yesterday and night of sleeping on my side, I feel ready to fight tigers. By damn, I can see normal from here.
Had lunch with kenscholes today. He gave me a package. In it were two copies of an anthology entitled Jay Lake: Intelligently Redesigned. I eventually wiped the tears of joy and laughter from my eyes, only to find myself overwhelmed.
neutronjockey, you have a lot to answer for. You and a bunch of other folks. You guys are the greatest.
I’ll give more details later, when I have more time. For now…wow…
With much relief, I have found out this morning that my genetic test results were clean, and I do not have Lynch Syndrome (HNPCC).
Life goes on now, with much rejoicing.
TMI below the fold…