"That Cancer Guy"

I've had an interesting week. (Side note: the white space that used to be here was bothering my editorial side, so I added this note to compensate for that and make me feel a little better.)

There's been lots of forward progress in terms of both Nick and I's book. Nick and mine? Mine and Nick's? My and Nick's? None of those sound right when I say them out loud. Weird. It's probably a poor way to structure the sentence, but I'm too lazy to do that. Because, you know, writing all this extra stuff out here is less work than fixing a few words. Oh well. Nick and I have met three times this week. On Monday we got together, discussed some aspects of Nick's memoir, then went to a meeting of the San Diego Writers/Editors Guild. Great idea on Nick's part, just utter genius. We'll get to that thought. On Wednesday we went over the non-writing aspects of our book: how much of our budget we want to spend on x, y, z, what makes sense to focus on first, what we need to look for in an editor, in a graphic artist, etc. Today we're meeting up to work on the actual writing and editing process. I think with everything that's happened this week, both Nick and I feel like we're on solid ground a little more. We have a very tangible sense of forward progress and confidence that this is an achievable goal (whereas prior to this both of us were in a bit of a quagmire, albeit for different reasons), and are more and more excited about getting our books published in the near-ish future.

The San Diego Writers/Editors Guild was such a fun experience for both of us. Although almost everyone in the room was at least twice our age, neither of us felt acutely uncomfortable. In fact, it was refreshing to be around them, because so many of them were in fact writers and had been published. The speaker for the night was, appropriately, a woman who talked about how to write the memoir of your life (although it was more geared toward an older crowd, us pups gleaned some useful information from the lecture/talk/thingy-ma-jig. We managed to make several new contacts, passing out business cards and collecting them from some of the people in the meeting. It gave us a good taste of what we might expect from similar events and are almost certainly going to try to make the next meeting at the end of July. Who knows, maybe we'll even join! Baby steps though, baby steps.

There were several amusing anecdotes gained throughout the night, but three of them really stuck out to me. Here we go:

1. That's NORMAL?!: Near the beginning of the talk, a woman sitting directly in front of us raised a hand as the speaker spoke about drafts and forming a story. "Excuse me," she said politely. "Before I even write a single word, I spin the idea around several different times in my head and make sure to look at it from several angles until it's perfect. Then I'll do about 25 drafts." Nick and I exchanged a glance, this lady was intense. The speaker nodded and told the woman that having so many drafts was, and I quote "completely normal." The glance we shared mutated into a mask of horror. If we did 25 drafts of our book, we'd both die of old age before we got even halfway through that many drafts at the rate we're doing it. I whispered to Nick that I think we should probably not do 25 drafts. He agreed quite readily.
2. I Just Sit Down and Write: Toward the end of the talk, an older gentleman by the name of Bill raised his hand. The speaker was discussing how to get around writer's blocks and that it sometimes requires lots of planning and outlining first when Bill interjected. "I don't bother with all that. I just sit down and write for six hours a day, seven days a week. Then I publish it." I wanted to applaud the man, because I've got little use for outlines, they never really fit that well with how the story ends up. I almost stood up and raised my fist with a cry of "Right on!", but quickly realized that maybe a meeting full of 60-90 year-old white people from San Diego was not the ideal place to pull a move associated with the Black Panthers. Perhaps one of the better uses of my barely touched mental filter I've had in my whole life.
3. That Cancer Guy: When the meeting began, Nick and I introduced ourselves and told the group about ourselves. Nick talked about his ultrarunning, and I talked about my experiences writing and a very brief synopsis of my condition (I almost went ahead and bet that I had more joint replacements than the whole room put together, but I suspect I wouldn't have won that bet, though it would certainly be close. I've had nine, so if a third of the room had one joint replaced, I wouldn't have won. But if I'd gone head-to-head against any one of them, I think I'd have an easy shot at winning). After the meeting, when Nick and I went around talking to people and introducing ourselves, I met a man selling a book he'd put together featuring the letters of a private in the Union Army during the Civil War. He signed my book and a couple other men came over and we started chatting. One of them brought up running and asked me how I could do such crazy races. I corrected him and directed his question to Nick. The guy said he thought I was the "running guy" because I had sneakers on and Nick was wearing these pseudo-cowboy boots. I told him that Nick was the running guy, not me. "Which guy are you?" the man who'd signed his book asked. Explaining I'd been the one with cancer, he frowned for a moment and then realization dawned on him. "Oh you're that cancer guy!" I imagined myself as a door to door salesman asking if people wanted to buy cancer (it was as weird in my head as I'm sure it is in yours). As we were leaving, Nick said to me: "You know that's probably what everyone will know you for if our books get big, right?" Another image popped into my head, people on the street passing by and recognizing me with a quick "Oh hey! You're that cancer guy!" I suppose that's me, I'm just that kinda (cancer) guy.

Yes, I'm that cancer guy.

We'll do some brief updates and then I'll let you get on with your day (or whatever you'll be doing after you read this far):

• For the last two months I'd been working on what was originally a short story. It ended up being three times longer than the longest short story I've ever written (Exhibit, which is one of the short stories in my book of short stories). The exact same thing happened when I was writing the second draft of Road to Refuge. It expanded more than TEN TIMES in length, very odd. So I guess this new story, whose title still eludes me because none of the ones I come up with really click with me, is actually a novella. Rough draft done, very pleased with it. This is the first major project I've finished (sort of) since I wrote the rough draft of my memoir. Yay.
• I was attacked by some sort of demonic superbug. I had several itchy bites on my lower legs on Monday, and by Tuesday morning they'd turned into massive sores almost ten times bigger (sounds familiar)! They're finally starting to get better now, but I swear I briefly thought I had leprosy.
• I survived the diagnosversary (see previous post). I hated it, definitely not one of the good years. But I did make it through, so that has to count for something.
• I'm back in physical therapy to try to strengthen my legs and specifically my knees so I can attempt to avoid having surgery in September. Fingers, toes, eyes, arms, and legs crossed.

That should do it for today. Have a good weekend everybody! Even if you're reading this on Monday, have a good weekend, whichever weekend is coming up soonest for you. There, that should take care of anybody reading this in the future. You're welcome.

Ciao now brown cow

Rollercoaster (Featuring Claire)

If you want to look at it from a glass half full perspective, then this recent reclusiveness was a lot shorter than the last one. A month and a half versus five months? That's better. If you want to look at it from a glass half empty perspective...then keep it to yourself. Or myself, since I'm the one struggling NOT to look at the glass as half empty.

Speaking of struggling...

These last few weeks have been extremely difficult for me. At times I've felt like I was on the verge of losing control like I had in January, although I am happy to report that this week has been substantially better than the last two or three. I'd actually started writing this post over a week ago and the saved draft I had was wildly different from what I'm feeling now. I think it really sums up just how much of a roller coaster this year has been for me.

There are two big events that I can cite for my increased anxiety and reclusivity (I need to get this word in the dictionary, I don't care what anyone else thinks). Firstly, I've run into another major hurdle with my health: knees. For those who don't know, I've actually replaced parts of my knees before, back in 2012 (right) and 2013 (left). When most people think of joint replacement, they think of the total joint replacements that involve fitting an artificial device where the puny organic joint used to be. But for me, the doctor and I decided that we would approach it from a different route: allograft. Essentially an allograft can be explained as a bone replacement. It appears to have a better lifespan than the artificial joints and, being younger than most recipients of new joints, it made more sense to do an allograft so I would not need to undergo surgery again for a longer period than I would have if I'd scored myself a total knee replacement. However, the allograft didn't replace the whole joint, just the most damaged parts (although the doctor did say that the allografts were looking really good, the best part of the knee actually). There is still a large amount of AVN (degeneration and dead bone) in my knees, and over the last few months I've noticed an uptick in the amount of pain experienced in both joints. I saw the doctor about a month ago and he couldn't exactly pin down what was wrong, but he basically said that there wouldn't be any major fix for the pain except to just scrap the whole knee and put in a shiny new artificial one. Needless to say, I was extremely displeased with this news. I'd just finished up getting both my shoulders replaced (both total joint replacements) and thought I was in the clear for at least another 5-10 years (when the artificial joints put in 5 years ago might need to be replaced again). Several months of no physical problems left me cautiously optimistic, because I'd pretty much replaced everything I could replace, but I can't remember anytime in the last 8 years when there hadn't been some major complication at least one or two times a year, so I felt overdue for something. So when the doctor said "Probably have to replace the whole thing," I was both shocked and unsurprised.

I took a couple weeks to decide whether I wanted to replace them or not, after all, the pain isn't debilitating yet. But what really drove me to say yes was the fact that he wouldn't have any surgery openings until the end of September. I didn't trust Murphy to play nice (I suspect my life is guided by Murphy's Law, as discussed in the blog post A Murphaic Victory). Rather than wait until the pain became debilitating and unbearable (assuming it ever did), I didn't want to wait until the pain got that bad to schedule the surgery and then be forced to wait several months in agony while I waited to get fixed. By scheduling it now, I have a safeguard in place in case they DO get worse, and if they don't I can always cancel. It all sounds solid, but for some reason that no matter how hard I try to explain, nobody really seems to be able to fully grasp (which is understandable, seeing how my situation borders on being unique) why making that call and scheduling the surgery was so difficult and painful for me. It feels like giving up. And at a time where I'm just starting to come back into the world and maybe even look forward to what the future has in store for me, it all comes (potentially) crashing back down to Earth and the same cycle of replacements and surgeries and setbacks all rushes back into place. Stuck. Scheduling the surgery makes me stuck. I won't pretend very many people will understand why the two-minute phone call undid two months of exhausting mental work at Cognitive Behavioral Therapy (CBT), but I'll leave it out there in case someone does manage to figure it out.
Summary (in case none of the above makes sense): My knees, which had already been partially replaced, are now beginning to hurt again. The doctor told me the only real solution would be to completely replace them, so I scheduled a surgery for the end of September as a safeguard for if the pain gets worse. It's stressed me out a lot.

The proof is somewhere in there

Now that the small essay you may or may not have just finished reading is over, I can move onto the second big reason for my increased anxiety and depression: diagnosversary. Sunday marks the eighth year of my leukemia diagnosis. Some years it hasn't been too bad, others it's been the worst day of the year. With my mental state the way it is, inherently unstable and only just starting to recover, perhaps it's more than a little underst
andable that I am what the kids call "freaking scared." The anticipation is definitely one of the worst parts (and I'm sure I've mentioned how much waiting is the worst part of anything medical), but coupled with my very recent recovery and scheduling the surgery, I've become exceedingly anxious about the day. Thinking or talking about it makes me anxious, I just caught myself holding my breath for the last minute and noticed all my muscles were tight and my body felt jittery and flighty. Perhaps why I am so nervous is because of how anxious I am NOW, not even on the actual day. The day is a symbol of a life thrown off the rails. It brings up memories that I've so deeply suppressed that I didn't even know they were there. Maybe the reason it's so bad is because I fixate on it and work myself up into a tizzy in the days leading up to it. In my last day of CBT, I discussed my anxiety and somebody pointed out that the day only means something because I make it mean something. Sunday is just Sunday after all. I think I've known that for a while, but trying to tell myself things that could be helpful for me...well let's just say I tend to discount much of the positive self-talk I attempt. It's a lot easier for me to accept something coming from someone else. I'm really going to try my best to remind myself that it is a day just like any other, that the only power it has over me is the power I give it. Easier said than done obviously, but it's certainly a new approach that warrants a try. I could also reframe it in a positive light: I'm alive. Sure, that day may have pushed me into a life nobody would ever ask for, but I made it through and survived it all. I guess the proof will be in the pudding, although why anybody would bury proof in a pudding is utterly beyond me.

The Old Guard with Mr. Swan

Quick life tidbit: I went to a send-off for my high school drama teacher Mr. Swan last night. I thought there would be tons of alumni there, but it turned out to also be the awards ceremony for the kids at the high school (most of whom are ten years younger than I am. Nothing makes you feel older than being in a room with kids nearly half your age). When I got there, I only saw children and immediately wondered if I had the wrong night. Nick came in a few minutes later, also being a theater geek from back in the day, and for nearly half an hour we thought we were the oldest people in the room. Luckily, there was a group of our peers from back in the day sitting at a table on the other side of the room. Only a few of us "old people" showed up, but we had a raucous good time reminiscing about drama and looking at old pictures of ourselves in plays. It was an emotional night for just about everyone there, but it was really good to see some of the old thespian buddies and to catch up afterward over a beer and talk about all sorts of things (ranging from Chinese words never to say in America to expensive toys to amusing stories from our lives). There is going to be another get together, this time with a lot more of the Old Guard (which is very literal for me, because in both Shakespeare plays I performed in, I played guards) at a restaurant later this month. I'm pretty excited to see a lot of the people I expected to see at the send-off last night.

This last week has been better for me. I think a lot of that has to do with me being extremely busy running around San Diego (not literally, I save that for Nick) to doctor appointments and whatsuch. I've also been a lot more social and have been doing my best to talk to and hang out with several friends of the last week or so. I also forced myself into writing more. I've been reluctant and anxious about finishing a long short story that I am enamored with. I didn't know why I was anxious about sitting down to work on it every time I went to write, but last night I figured it out. When I'm done with this story, I have no excuse or distraction to keep me from getting back to editing my memoir, Life Has No Title. Currently, I'm stopped at the very worst time in my life. This section was not only the most difficult to live through, but also the most difficult to write. At a time where I'm worried about memories being triggered by the diagnosversary, perhaps it's not hard to imagine why I would be finding any way (whether conscious or not) to prevent myself from going back to work on the project that literally takes my most painful memories and shoves them in my face for me to reread and edit. But...I know I have to do it. I've got lots of wonderful feedback from my neighbor (the first professional feedback I've ever gotten to this extent, which was nerve-racking in and of itself) so I will be able to go back into the book with a lot better sense of how to edit it. But holy damn am I really not looking forward to this. I need to force myself to do it though because this is extremely important and I need to face my fears. Not just face them, but overcome them. It'll be cathartic. I hope.

Ciao for now

PS: By the next post I hope to have some pretty exciting news regarding the memoir. Appendages crossed!

PPS: Claire says hi