"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

Return of the Recluse

I'm so tempted to put Episode VI: Return of the Recluse...

Man, where to start...

First, I would like to explain my nearly half a year absence. After I had my left shoulder replaced, things quickly went downhill. Physically I was doing well (we'll get back to that later), but mentally something had happened that I could not fully explain. All I knew was that I was feeling disconnected, anxious, depressed, and extremely unhappy with life in general. Then in January, I hit rock bottom. I began to have nightmares, sleep paralysis, and suffered from extreme paranoia that made me jump at every little sound or even something as simple as an object in my peripheral vision that I couldn't immediately identify. I felt like I was going insane, that I'd finally suffered that long-term nervous breakdown that I knew would be coming for me at some point. I've had some breakdowns before, but none lasting this long. I was in this state of agitation for over a month and knew that I couldn't live life like that. So I sought out help and my therapist recommended that I try doing some mindfulness meditation (we'll get to that later, part 2). Shortly after I began the mindfulness, I started to feel better, also buoyed by an anti-depressant that I've been on and off since I was 8. It took me a while to figure out what was going on, but I figured out that it was my PTSD that was causing me to freak out and turn into a quivering shadow of myself for several months. My best guess is that this was all brought on because I no longer had any surgeries to worry about (or look forward to, if I'm being honest the thought of surgery has been more comforting than distressing, because I know what to expect) in the near future and my path was, for the first time, open for me to do as I pleased without having to worry about a very possible disruption from Murphy to derail my plans. However, I still have that fear of the future, moving forward is scary. Change is scary. I'm so familiar with what I have right now, even if I'm not satisfied with it, that to change and move on with my life and put the past behind me...it's terrifying to me. So that is where my life is now, at the precipice of an uncertain drop into the future. Behind me: solid ground, the past. Down there: black uncertainty, the future. So much of me is screaming not to take that leap, but I know I need to if I am ever to make all of my suffering and the suffering I've caused to those who care about me worth something. Now in my life comes the hard part...moving out of the label of survivor to thriver.

I suppose I should also discuss how my physical health has been, because that's important too. After the left shoulder was replaced, I began to use my right shoulder a great deal more (obviously) and as a result both shoulders are doing exceptionally well. I didn't have much doubt that the left shoulder would be anything but fine, and I was right. The left shoulder progressed even faster than the right, and now they are about the same, with much better ranges of motion and a lot less pain than I was having since the surgeries. Although the shoulders are doing well, my knees have been real asshats. I've been dealing with more general pain in both knees (the right one is worse), as well as random spurts of flaring and sharp pain that crops up at random times. I'm calling my knee specialist in the next couple days to see if I can get an appointment and find out what's going on. At the same time as the mental breakdown, I starting having a severe migraine storm (hurrigraine, as I have not-so-affectionately called them) where I have bad headaches on a daily basis and bad migraines a few times a week. I'm on a new medication for that now, hopefully it will calm that down shortly.

I don't really think I need to add too much more to what's going on mentally for me. Besides the depression, PTSD, nightmares, sleep paralysis, high anxiety, fear of the future, and completely shutting myself away and becoming hyper-reclusive, there's not much going on. Most of that I'd already discussed, and I am happy to say that a lot of the paranoia and nightmares have almost completely gone away. I'm no longer waking up screaming every night or nearly pissing myself if a box is left in the hallway and I see it out of the corner of my eye. So that's good. The depression and PTSD and anxiety are all still there, but I've been going to a Cognitive therapy group that has given me a few tools and insights in the three weeks I've been attending it. Mixed with the mindfulness mentioned above and it has been very helpful in getting me off my back and into a sitting position, with the goal of getting back on my feet closer to being within my reach than it was since my first shoulder surgery. (I identify that first surgery as the genesis of this breakdown, with the second one being the thing that helped break me completely)

Sadly, I haven't been doing much writing, but that's really not terribly surprising considering I've been totally drained of energy for the last five months or so. Depression does that to you. It's one of the hardest things for me to overcome at the moment, because it's still there, festering like an infected wound that I can't quite reach to clean it out properly. And the anxiety of trying to move forward in my life doesn't really help out too much either. But I am doing my best to fight against it, even if it often feels like a losing battle, because I know I can get through this just like I have everything else. I just need to push through and pull myself out of this deep dark hole I've dug for myself.

I think the only person I've seen with any real regularity is Nick. He and I are continuing to work on our books and are both in the editing phase (which means different things for him and I, but that's all just semantics). I'm around 1/3 of the way through my second draft of my memoir Life Has No Title, and Nick and I continue to make good progress when we meet up at least once a week. I would like to start doing some editing outside of those sessions, I know I should, but it's really tough. I think it's so tough because the Cognitive therapy lasts for almost five hours (half an hour drive both ways with over three hours of therapy) and I am completely exhausted mentally, emotionally, and physically by the time I get home and all I want to do is lie down and read or watch TV or anything besides push myself harder with going through the pages of a book that were excruciating to write. However, as I get better, I anticipate an uptick in my production and I have currently set the goal of being finished with the second draft by July 1, 2015. We'll see how it goes.

I think that's about it for now. I will likely go into more detail about the Cognitive therapy and Mindfulness and maybe even my mental health in other posts, but the fact that I'm even writing this is a good sign. It means I am trying to come out of my self-imposed exile and wish to stop being reclusive and attempt to be social again. It's hard, really hard. It's comfortable to be disconnected from everyone, but I know it needs to be done. I have a message that needs to get out and I can't do that sitting in my car driving between doctors and staying at home and picking away at random projects. This is what I need.

Welcome back to my blog, let's hope I can be consistent with the posts like I was before. Fingers (and everything else that's flexible enough) crossed.

Three Weeks of Updates (Left Shoulder Surgery Recovery)

Hi blog,

Finally time for the update! Since I'm still having a bit of a hard time typing, I'm going to give you updates as I've been giving them to friends of mine since the surgery.

10/28
The surgery went really well. It took half as long as the right shoulder did last time. I had a nerve block so I'm not in any pain and hopefully I'll be able to go home in the morning! Typing is a bit of an annoyance cause I've only got one arm, the left arm is immobilized by my uber sling and I can't really feel anything in that arm anyways. I don't need painkillers that much because the nerve block means I don't feel anything. All in all, things are looking great and I'm guessing recovery is going to come along nicely!

11/1
I got home yesterday, I had to stay in the hospital a couple extra days because the pain got really bad and I couldn't leave until it was better controlled. The nurses and doctors didn't really help much with the pain because they didn't listen when I told them I have a very high tolerance for pain medication, so I kept getting doses for normal people, which did very little to actually control my pain. I got through it though and got out of the hospital. It's manageable now so I'm resting at home and able to do a little bit already. The doctor says everything looks really promising so far. It might even heal better and faster than the right shoulder, so it's all going well so far. 

11/4
I've started doing at home PT which is going well. The range of motion is decent and it actually doesn't hurt too much to do the exercises as long as I keep it calmish. The therapist I'm seeing says that it's definitely better than the right one was at this stage and was impressed at how much better it was. I'm seeing the therapist again tomorrow so we'll see how it goes. Other than that I've just been taking it easy to ensure I don't push myself too much and worsen my recovery. I'm trying not to let the boredom of being safe with my health annoy me too much. I'd been having some fevers and shaking on and off at night, but it's gone down and hasn't happened in a couple days.

11/5

I saw the doctor for my one week post-op appointment and they took the bandage off my surgery site before I saw him. It's looking very clean and hardly at all swollen. There's a thin scar but it doesn't look red or angry, which was a nice surprise. The bandage was left off so now it's completely uncovered, which burns a little to the touch but is otherwise fine. I had some x-rays done and the doctor says it's looking good so far. He also checked my range of motion and was pleased, even said that he fully expects the left one to heal up faster and better than the right one. All in all, the doctor thinks everything is coming along nicely and I'll be seeing him again in six weeks.

11/13
The nurse who comes to the house says the scar is looking really good, no infection or anything. PT is still going well, I started doing shoulder shrugs and my arm is getting better range of motion, although it's definitely painful. Part of that pain is coming from the lack of painkillers, the person who wrote the original prescription did it differently than I'd been taking it so I've been forced to ration my painkillers in order to have any at all, waiting to get more all week but tomorrow I'll get new ones. It's been difficult and has caused more pain, but I didn't really have an option. I tried calling the woman who prescribed them but she never called me back so I just rationed them and dealt with the extra pain. This sort of thing isn't too uncommon, problems with medication or hospitals or health stuff in general always seem to follow me around, you just deal with it best you can. An increase in my pain for a week I can deal with, I've held out this long, I can wait another day. Still, would have been nice if this hadn't happened at all. 

11/16
Got my painkillers so everything is good now. PT still going well, added in a couple more exercises. The pain has increased a little bit and I'm not sure why. I've had a couple nights in a row where I've woken up repeatedly with sharp pain assaulting my shoulder, I think it might be the way my arm is positioned so I'm going to try to change it a little and see if that helps (note: it did, although I only slept 3 hours last night I didn't wake up due to pain). I'm starting to get back into school and normal stuff instead of just sitting around and relaxing and making sure I don't overdo things. I'm still not back to my normal routine, that will take a while since I'm supposed to wear the sling for another three weeks at least, but I can at least start to catch up on stuff that I missed and work on keeping my grades intact as best I can. 

And that sums up the last three weeks of my recovery. I will do my best to keep regular updates from here on out, although I will be very busy with school because I have two classes to catch up on. I will do my upmost to keep you and all the readers apprised of my health and any updates as they come up.