The Path to Normalcy

Hello again,

It's been an incredibly hectic few months. Which leads me to something I feel is important to discuss that I'm sure isn't all too foreign, at least on some level, to many:

I tend to get overwhelmed somewhat easily, especially with the more mundane aspects of life—work, school, bills, insurance, socializing, what have you—and especially when they're all happening simultaneously. For years, I felt ill-equipped, like a failure, for not being able to deal with the realities of independent living. This was a near-constant thought I repeated like the world's worst mantra.

Yet, when it comes to traumatic events in my life—surgery, car accidents, cancer scares, joint collapses, etc.—I cope far better than most. After ten years of dealing with grim prognoses and continual setbacks, what most people would consider horrific experiences are my normal. The reason? I was diagnosed with  leukemia a little over ten years ago, just as I was about to graduate high school, and so instead of learning and adjusting with my peers to adulthood, I struggled just to stay alive and, once I'd come out the other side, to recover. The natural path of leaving the nest and learning to navigate the real world wasn't mine to walk. Instead, I found myself on a more winding path to a reasonably normal life, slowly picking up the skills necessary to do so.

While I added to my repertoire of life skills, I contended with numerous surgeries and other setbacks that served as an ever-growing ball and chain that slowed my progress to a crawl. And the depression and anxiety and PTSD from my battle with cancer and the cure were as broken glass along that path, pain and suffering that reinforced the belief it was far easier to stay put than continue on to endure further cuts, slowly bleeding my resolve. Each additional mundanity increased the incline of the path—growing ever steeper, ever more daunting.

The combination of these factors is sometimes enough for me to shed some of my less urgent tasks to pour my effort into those that are necessary—to ease the angle of the path and thus the energy required for forward progression. Over the last couple years I've become better at juggling multiple responsibilities, but it has not been easy, and I've had to do it almost entirely on my own.

I know I'm not alone in this predicament. Many young adult cancer survivors have similar issues, as do people with depression, anxiety, and other mental illnesses. That's why it's so important to find ways of tailoring support to those who struggle, because as it sits today, the resources can be improved. It begins with our attitude toward how we offer support and what we think adequate to get these people back on their feet. Unfortunately, the problem doesn't just go away when someone is "cured," there are lingering after-effects that can be just as damaging and difficult to overcome as the original diagnosis.

The issue is a pervasive one, and only when we work to find the best treatments not just for those currently suffering their maladies, but for those recovering as well, can we ease their path back to normalcy.

~Andrew

The Good, the Bad, and Pluto

Over the last few weeks I've been thrust into the battle between my desire to move forward and my trauma trying to hold me back in a familiar place, rather than go out into the world and risk more hurt and difficulty. Even if I want to side with moving forward, it's hard to overstate the power of the trauma-induced fear in paralyzing me. It's one of those ugly truths about the whole experience of cancer, that cancer doesn't end with a pat on the back and an "Atta boy" when you get the beautiful news of remission. It stays with you, sometimes for the rest of your life. Whether it's an amputation or the scars of surgery or needing assistance or waking up screaming or crying when a memory is triggered, the experience tends to stick with you like a needy koala toddler to its mother. The last year has been especially rough, with the paralysis nearly choking the rest of my will to move forward to death. But, with a lot of work and both the desire and the need to push through the anxiety, I'm finally beginning to make headway in a couple areas. I'm hesitant about being overly optimistic, but I'm starting to think this might be the first few steps in the direction I have been wanting to go in for years now, it's just been that life is content to throw a googolplex detours my way.

Perhaps the most important thing, to me at least, has been the work I've been doing on my book. I mentioned before that I was waiting for my editor to get my memoir back to me, and only a few days later, she did. Her report and her notes on the manuscript itself were absolutely astonishing and very touching and meaningful for me in so many different ways. Personally, I believe that her kind words and belief in my story and my ability (the terror of wondering if her notes would come back as a mighty hand to swat down the pathetic insect that laughingly thought it could write kept me from opening her notes right away, but even before the end of the first paragraph I felt relief in a way that I don't think I've felt since...probably 2012, when I was the closest I've ever been to reaching that semi-normal life I've been craving) have been key in lighting a fire under me not just in working on the fourth and newest draft of my book, but also in other areas of my life. Getting a bit of confidence in one area seems to have been contagious, and it might be the first contagious thing I've been happy to catch. There's still a lot of work to be done. I'm a third of the way through her edits (plus edits of my own that I'm making after hearing her general thoughts on the book and what areas to focus on more or reduce) and hoping to finish within the next few weeks. After that, assuming the length is more reasonable than it is now (Currently I'm 20,000 words over the maximum "limit" for a memoir. Although there obviously isn't a real limit, the usual length for one ranges between 60,000 and 120,000 words), it's onto the marketing and networking. I've got a lot of trepidation about that, but the more success I have with the book and in life, the better I think I'll be at tackling these sort of problems. I believe victories in life help to give me confidence, especially when they've been so rare and tainted with bitter irony or followed up with crippling defeat. For now, that's not going to be much on my mind, I choose to focus on getting the edits done first. One thing at a time.

The other big thing I've been working on and have begun to find some success in is being more social. When I get overwhelmed I tend to shut down and shut away to decrease the amount of stimulation and unknown variables that my brain says will only make things worse. Even if I don't want to, the anxiety of having to face other living entities becomes a daunting challenge that my mind refuses to attempt. I've been wrestling with the comforts of reclusiveness for the last few months. It's comfortable for me, in much the same way I actually preferred being in the hospital after my ordeals with Graft vs. Host and the side effects of the bone marrow transplant. I hated the hospital, much as I hated reclusiveness, but there was a kind of serenity and comfort in them, they were predictable, and so there wasn't anything to be worried about. No real surprises, just maintaining a basic existence was about all I wanted to deal with. Simple things, things I could enjoy or that would pull me from reality and plop me into my head where the world couldn't get to me, that's what I wanted, even as I protested against it. It's been hard to drag my unwilling brain back into some sort of social mode, but I'm doing my best to force myself to contact people and hang out with them. I know that once I am spending time with friends, I enjoy myself tremendously, but in the days and hours and minutes leading up to that encounter, I feel the panic and the desire to call it off get stronger and stronger. Grappling with that is exhausting, but it's worth it when I finally get to see friends and I can forget about it for a time. The more I socialize, the less my brain protests, so it's been getting a bit easier lately, but I'm still wary and making sure I stay on top of the reclusive me so it can't surprise me and shut me back away again. I really do want to be part of the world, especially since the world has space and gravitational waves and Pluto.

Hope your year has started of well so far,
Ciao

PS: I'm starting a new writing blog, Make a Write Here (I know, I know, deal with it. I'll feature pieces and excerpts from various stories and non-fiction, discussions regarding aspects of writing, and updates on current writing projects. It's online at the moment, but I have yet to post any content besides the first generic "Hi, this is my blog" post. It's also not full formatted, but I'll probably get around to it before the universe ends (maybe).

Guess not...

Ethereal

You know the brain is a weird thing? (See above) One minute it's fully comprehending something, and the next that something is completely out of reach and inaccessible. That's how it's felt with this upcoming surgery. I've known about it for a couple months, hell I half-begged the doctor to do it, but it hasn't felt real to me in all that time since then. Ethereal, that's a good word for it. It's like some vague threat that nobody really takes seriously, yet is still very real. Tomorrow that threat is realized, because that's when I'm going in to get my left shoulder replaced. I did have a very short period of realization during my hospital pre-op last week, which resulted in a half-second panic attack, a single smothered sob, and then total composure and the connection to the surgery flitted back off into the ether.

This is kinda what it looks like...
only worse

The surgery is taking place at 7:15...in the morning. Which means I need to be at the hospital at 5:30 am, which means I have to be awake at approximately 4 am. I'm debating not even bothering to go to sleep, because that's about when I go to bed anyway. The surgery itself will be a total shoulder replacement, sawing off the ball joint and replacing it with an artificial head and fixing a plastic cup to the socket area so the fake head has a snug place to sit. The x-rays showed that the shoulder configuration essentially reversed itself, with the head collapsing around the socket...it looked weird. The x-ray tech complimented me on my train wreck of a shoulder. Someday I'll talk about how much I enjoy x-ray techs and their odd, somewhat morbid sense of humor that totally jives with me. But that's a post for another time, space, space-time, and quantum. Maybe some strings and branes for added effect. Look, I had to throw in science somewhere...

The reason you haven't heard from me in the last two weeks is because of all the work I've been doing trying to get ready for the surgery. There are a lot of loose ends to tie up (no I don't work for the Mafia...usually) and things to get put in place so I don't have to worry about anything other than my recovery for the next few weeks. School, paperwork, government stuff, medical things, life, friends, stress, all that needs to be taken care of prior to a surgery. Even if these surgery is completely ethereal to me, the full ramifications just out of reach to my conscious mind, I'm still under an inordinate amount of stress. I've been increasingly anxious without having a concrete reason (even knowing full well a lot of it comes from an unconscious worry about the surgery, I can't connect it on a logical or conscious level), so it's lowered my ability to focus and be able to do things, which requires me to prioritize what needs to be done and neglect certain others. Most of that has come at the cost of my social life and writing, two things that took a major hit in the last month when I semi-dropped off the face of the Earth. I figured that's something that I can pick back up after I'm doing better, whereas making sure my grades remain unaffected and finishing up paperwork on time seemed to be a more pressing issue.

This is the voice in my head for those who remember

I have taken some solace in knowing that this shoulder isn't as bad as the right one (which was replaced in June) and that I'm familiar with the workings of this one. The second joint always seems to be easier than the first one I've found (as evidenced by having both hips and knees replaced separately), so that does alleviate a little of the stress. It's still there, it always is. As blasé as I've been about the surgery and reassuring to everyone that it will be fine, there's always that little voice going "Yea but what if it isn't?" It's a hard voice to ignore. It convinced me I was going to die last year when I had my left knee replaced, although clearly it was wrong. That doesn't mean I can shut it off, but I have been slowly turning down the volume to its rambling statements of doom and hellfire.

I suppose it will be another couple weeks before any meaningful posts come out of this blog again. There might be a quick "I'm fine" post when I feel up to typing, or maybe something written by someone else with a quick explanation of how everything went. Otherwise, I'll be laid up and unable to use one arm and on enough painkillers to make a whale very, very happy. I'll try to get something out at a reasonable time.

Until then,
Andrew Bundy

Chaotic Preparation

Hi blog,

Surprise!

Surprise surprise. No really, surprise. Surprise because although I reported that I was waiting for surgery with the anticipation that it would be near the end of July for the time being. Well, I ended up seeing a new doctor to try and get some more opinions about the surgery, being the big thing that it is, and I ended up really liking both his plan for surgery (he wants to do a total shoulder replacement because it's more reliable and predictable and is better at managing pain, as opposed to the partial replacement the first doctor wanted) and also his attitude altogether. I got a call from his office the next day (this was two Wednesdays ago, twelve days) offering me some surgery dates. The first was on June 24th, already exciting by my standards because it was a full month ahead of the other doctor's planned surgery. Then she told me they had an opening for June 10th. I hesitated only because of how shocked I was that they had a date available so soon, then I swooped in on it, an almost irrational fear settling in that if I waited a second longer, somebody would snatch it out of my grasp.

So...I'm having surgery tomorrow. Surprise.

I'm happy about it because it means a lot of good things: I'll be able to heal over the course of the summer so it won't interfere with my schooling, my brothers will be around to help out so it's not just my parents (although a shoulder surgery allows me a great deal more autonomy than any of my lower joint replacements, since I'll be able to get up and walk around and the only limitation is my use of only one arm), and I won't have to deal with the exponentially worsening pain in my right shoulder (the left is also getting worse, but not as quickly) for two months while I wait on endless days to pass before I can fix the problem. However, there is one very big bad side effect: I've had very little time to prepare mentally for the surgery. Normally I have at least a month when I get something replaced, and even that can prove to be not enough time to fully prepare myself for the stresses I'll face. There's a great deal more anxiety going through my head than I remember with the other surgeries, a lot of barely contained panic and worry about this and that and those and these. I doubt I'll sleep much tonight, which is fine, I'll have a two-and-a-half hour nap around 11:15am tomorrow courtesy of an anesthesiologist and his drugs. I know most of my worries are unfounded, but without much time to convince myself of that, I'm having a difficult time setting aside the constrictor-like anxiety crushing my chest. Once I get into the hospital, it usually alleviates some, but I'm concerned that without enough prep time, I'll still be incredibly nervous beforehand. We'll have to see.

But surgery isn't the only thing going on. A couple days ago was my 7-year diagnosversary, seven years to the day when I was diagnosed with acute myeloid leukemia and propelled at incomprehensible speeds down this path that is now my life. I'm always worried about relapsing on that day, and with good reason. That day, more than any other, brings back flashes of the last seven years and throws them in my face for me to watch, totally subdued and unable to stop it from happening. I simply endure the agonizing memories and remind myself that I beat it, it's in the past, and I won't let some phantom assailant assault me with brutal imagery until I give in and gulp down several handfuls of pills until the pain stops and I drift into that addled narcotic haze for a few hours to escape it all for a bit. I didn't relapse, same as the last four years. It's never easy, almost as soon as midnight came around and it was June 7th I felt an overwhelming sadness smash into me and for the next several hours left me with an unused sob in my throat. I managed to distract myself for most of the day with television and video games, mindless things that dragged my attention away from the date and into a world outside of ours. Whatever it takes to work, that's my opinion. Whatever it takes to avoid using drugs or falling into despair and misery, I'm all for it. Just so long as it's not hurting anyone, it's not to be scoffed at. We must do what we have to in order to keep our lives as pleasant as possible. I'm okay with whatever methods work for me, it's better than the alternative of not having them.

I went up to San Francisco (most of the time was spent in the suburbs, but listing a bunch of towns won't really help) to see my best friend and his fiance and their dog. I only spent a couple days up there because I was concerned about how my health would fare, but it ended up all right and I had a wonderful time seeing all of them (as well as around 40 other assorted reptiles, mammals, and arachnids). We wound up going to a shiba picnic with all sorts of small, adorable mini-husky looking dogs (I'll probably get in trouble with the shiba inu community for the comparison, but that's what they remind me of) for several hours. I also got some sourdough bread in the shape of a turtle, because hell yea!

That's about it for now, a quick update after an extended silence caused by the insanity of the last couple weeks. It's mostly been chaotic preparation for the surgery and sorting out all the little details that need sorting out, I've been frazzled and busy and forgetful due to stress, but I will try to do a much better job at updating on how my surgery went when I get a chance. I'm going to be doing a total shoulder replacement of my right shoulder (see link for surgical details). The surgery last two-and-a-half hours (see above for me mentioning it before) and I'll only be in the hospital for a day or two if everything goes to plan. After a little over a year I'll be 100% recovered (I'm probably at 40% capacity now anyways, so I can wait), although after four months I'll have my left shoulder replaced (when my right shoulder is around 70% recovered). I'll be able to use my right arm a little bit, but it'll be in a sling so typing and doing anything with that arm will be difficult, though I'm not entirely sure just how difficult yet. We'll see. Yea that's about it on the info dump section.

Anyways, I hope the humans reading this have a lovely day, and blog, I apologize for the neglect, but you should probably get semi-used to it for the next month or so, maybe longer depending on the healing. I'll still try to write something, just don't expect long paragraphs and a small novella.

Ciao for now