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

My 7th Birthday

Hi blog,

Apologies for the gap. I've been trying to get a handle on everything and it's been frustrating and draining to say the least. The closer the surgery gets the more things seem to pop up to deal with. I'm definitely going to be looking forward to a nice, relaxing, pain-filled break after I get my shoulder replaced in exactly two weeks, let me tell you.

I was going to put a picture of a knee with AVN, but then I
decided this was a much better option. Don't you think?

Well, I suppose you're waiting to hear about the knee. I am too, I only just had the MRI on Saturday so I won't be learning anything from that for another few days probably. However, two days before that I went in to see my knee specialist (the first guy I saw was my general practitioner, who also does sports medicine) and the x-rays looked about normal, same as before. But then he pulled up a knee MRI I had done back in May (I didn't even remember having it) and he showed me the inside of my knee. It wasn't pretty. The majority of the interior was made up of necrosed (dead) bone. To be fair, this isn't exactly news to me. I've known that there was a lot of necrosis for a while, because of my Avascular necrosis (a degenerative bone disease caused by steroids. See here for details), but as long as the dead stuff stays inside the bone and doesn't penetrate to the surface, it's not going to cause any pain. Well, there was a tiny tentacle of necrotic (just using all sorts of variations of the word today aren't I?) bone snaking down through a big patch of it and had just barely breached the surface. There was only a tiny spot exposed, and my specialist thinks that might be what's causing the knee pain.
Theory: Because the pain only really shows up when I bend my knee at certain angles, that small dead spot is rubbing against something at that certain angle and causing the pain. When I get this newest MRI back I'll learn two things. A) Whether or not the little spot has grown any, 2) What can be done about it, assuming something needs to be done about it. Obviously there's a lot of speculation here, and that in itself is driving me up the wall. As accepting as I am about the shoulder surgery, the possibility that I might need another replacement (if the necrosis is spreading in the knee and the pain continues to get worse, my specialist might recommend surgery again) after that has done nothing to improve my mood. Frankly, I'm pissed. Murphy, always Murphy.

But that's neither here or there now so I'm trying not to think about it too much (and not doing a very good job). The book editing has been coming along, not great or fast, but it is progressing at least. Unfortunately there are more pressing things to do than editing my memoir. I'm not happy about it, because this memoir is literally the most important thing to me, but what can you do?

Let's talk about something pleasant. I feel this whole post has had a somewhat sour tinge to it. But now for something uplifting and cheerful! (Kinda) Two days ago I had my 7-year rebirthday (and I think I'm having a regular one in a few days too). In some ways, I am seven years old. This me, right now, is only seven years old. It's when I got my bone marrow transplant from marrow harvested from my brother Chad's hip bone (the needles look like something out of the Spanish Inquisition).  October 12, 2007 is when I got my new life, a new chance.

Excerpt from Life Has No Title:

When you receive an infusion of bone marrow, the staff up at City of Hope calls it your “birthday,” the day where you’re given new life and, in a sense, reborn. October 12, 2007 is my oncological birthday. The doctor for the day, Dr. Pawlowska (spelled right the very first time!), came in with a nurse carrying a bag of what I at first believed was blood. I had known that my mom was organizing people to donate blood for after I had my bone marrow transplant, and thought that before I could receive it I would need to bolster my cell counts, but I was mistaken. Instead, the ruddy-colored viscous liquid was the bone marrow! This piqued my interest a great deal, insofar as someone who is hopped up on a staggering amount of dilaudid can do anything to a great deal. I had been paying as much attention as possible, learning what I could about this and that, gaining as much knowledge as a second-year med school student in the process. If I had the energy to focus, I would listen in on conversations and pick up some odd terminology or medical explanation for whatever god-forsaken side effect I had picked up that day.

“How are you today good sir?” Dr. Pawlowska asked in her thick-accented way. It was the same question every time she saw me in the morning. “How are you today good sir?”

Most days I would respond with, “Okay I guess.” Or “Not too great.” I was a master of understatement. But today, I gathered up a smile and told her, “Excited. That’s the bone marrow?”

“It is. We’ll just hook this up and you’ll be good to go.”

“Wait…how does it get into my bones then?” I asked suspiciously. As far as I could tell, there were no nanobots lurking in the substance ready to transport the bone marrow from my bloodstream into the centers of my bones, where they would thrive and drive out the remnants of my treasonous cells.

Dr. Pawlowska offered up a tentative smile. “To be honest, we’re not entirely sure. I could tell you all about the different theories and everything, but nothing has been proven definitively. They sort of magically find their way into the bones.”

Magic. One of the last words you want to hear when a doctor is explaining such an important medical procedure to you. “Magic,” I repeated slowly, not entirely sure if I had misheard her in my drug-induced haze.

“Magic,” she reaffirmed.

We looked at each other for a long moment, then I shrugged and lay back in my bed, too exhausted to argue and knowing that the good doctor knew what she was doing, even if she wasn’t sure about the exact nature of the procedure. “Good enough for me. Let’s get started.”

So there you go. Chad saved my life. I wouldn't be here if he hadn't donated his marrow. The poor kid got stabbed by a thousand saw-toothed needles, woke up so groggy he couldn't figure out how to properly use a straw and had a sore hip for several days. I have him to thank for this second chance and the ability to continue to live and enjoy life, all the things I love: writing, space, science, friends, family, space. I'll never be able to repay that, but at least I can pester him with interesting space facts the next time I see him.

PS: Comet Siding Spring will be flying past Mars on October 19 at a distance of 89,000 miles (much closer than the moon is to Earth). It'll be awesome.

Your 7-year-old Master,
Andrew Bundy

A Murphaic Victory

Hello blog,

I know I neglected you all last week, but I was busy doing stuff and needed to rethink my direction with you. Still thinking, but I don't think it's fair that you should suffer because of my reassessment. So, until then, you shall continue to develop a use for one thing or another.

VICTORY! After a couple months of writing about all of 2008 (easily the worst year of my life) I am finally finished! I was extremely stressed the entire time and was nearly convinced that I would either relapse and ruin over four years of sobriety or end up in a mental institution. I am happy to report that neither of these occurred! Honestly, I'm kind of shocked. In fact, I was so shocked and happy that I actually wrote about the whole thing at the end of the chapter. Here's an excerpt from that:

Secondly, I’m telling you this because I…am…DONE! 2008. No more! I am free from the hellish quagmire of pain and misery that nearly killed me multiple times, that destroyed my body and put me through the whole new hell of recovery that you will read about through the rest of this book. If any part of my life was bound to totally undo me and send me to a mental institution with a very clean, snug jacket clasped around me, 2008 was it. But it hasn’t. I’ve come very close to relapsing (in a drug sense, you’ll read about that too in a bit), to crying and never stopping, to slamming my head against a wall until my brains resemble scrambled eggs, to curling up in a ball and never coming undone, to never speaking again, to losing my very essence to complete madness. I’ve been assaulted by memories rising out of the dark crypts where I buried them so long ago, I’ve yelled at myself both in my head and out loud, I’ve told myself to shut up, to stop writing, to give up and give in. But I DID NOT!

Whenever people tell me I’m strong and they could never go through what I’ve been through, I tell them the same thing: “I’m not really any stronger than you are. You really only have two choices. Be strong or die. Most people’s self-preservation instincts can pull them through some of the craziest stuff. I hope you never have to find out though. I hope you’re allowed to keep on believing that you could never make it through what I’ve made it through. I don’t want you to go through what I went through.” I wouldn’t wish it on anyone.

Still, I always diminish my strength because I believe that people are far stronger than they think. If you had asked me if I was strong enough to survive even half of what I’ve been through in the last seven years, I would have laughed and said “No way!” But I have. We underestimate ourselves. There is so much potential strength lurking in every single one of us. You, yes you, can almost certainly make it through what I did. I hope you never have to find out. But I believe in the power of the human mind and its astonishing ability to guide us through times of intense trouble. Sure, we have little hiccups along the way, like my panic attacks or nervous breakdowns, but those occurred after the main body of the danger. In the midst of it, you lose sight of almost everything except one: survival.

That being said, I’m a lot stronger than I would have guessed. When I started writing about my diagnosis, I told myself that if I made it through 2008 without relapsing or ending up in a mental hospital, I would be some kind of uber Superman. I’ve tried half a dozen times before and never made it into the year 2008, the year of hell. Honestly, I’m not entirely sure how I did it. Baby steps I guess. I didn’t look too far ahead, I just focused on one problem at a time. That’s what it takes sometimes. Baby steps.

Of course, my life seems to be watched over like a hawk by Murphy's law. Murphy doesn't like me very much. A couple weeks ago I started having shoulder pain shortly after getting a vaccine and having the nurse hit a nerve bundle. That pain dissipated, but I realized that a much deeper, sharper pain was emerging in my right shoulder. Then it became mirror (with a lesser intensity) on the left side. I have severe bone degeneration in my shoulders, have for years now. And although my range of motion is pathetic at best, pain has never really been an issue, so I haven't seen any reason to get them replaced. But now, I fear that might be my course of action. I saw my general practitioner today and got some x-rays. He looked at them and told me he hasn't seen any joint look that bad from degeneration ever. I told him I would probably make a good case study then. "It looks like it's melted," he told me. This is the image that popped up into my dismayed head:

Yes, my shoulder resembles a melting clock from Salvador Dali's "The Persistence of Memory." The socket is intact, but the head (the "ball" of the ball-and-socket joint) of the shoulder is just a total mess. There's bone spurs and collapse and cracks and fractures running through both shoulders. The right one looks only marginally better than the left. My doctor recommended we try a couple different type of shots, but if the pain persists, I'll have to get one or both of my shoulders replaced. Needless to say, I'm rather upset about this. About a year ago I had my left knee partially replaced (transplanted technically) and I very foolishly made the declaration that "this is probably going to be my last surgery for a while." Murphy must have heard me, because it's not even a year later and now my shoulders are going. The only good thing I can think of is that at least this will complete the set. Eight major joints and none of them mine. There's a lot of words going through my head now, and hardly any of them are printable.

A totally normal left shoulder x-ray

My left shoulder x-ray as of April 11, 2014. Where the arrow is pointing, you can just make out a
thin crescent shape going from the bottom left of the ball to the top middle of it. Everything inside
of that has collapsed. The digital picture looked about twice as bad as this one. There are also a number
of cracks in the bone that can be made out in addition to decreased bone density (more transparent)
compared to the normal x-ray seen above. 

Your relieved, concerned, and irritated master,
Andrew