A Finished Memoir and Double Digits

Eight months. It feels longer, shorter. My focus hasn't been on time, it's been on productivity. On staying sane. Staying on task. And there's been a lot going on. But really, the big, most important news, is this: After six drafts, four major surgeries, three and a half years, one nervous breakdown, much consternation, (and a partridge in a pear tree)... I finished my memoir!
Surviving the Cure: Cancer was Easy,* Living is Hard.

*relatively speaking

That's right. I have done about as much as I can with this thing. It has been written, edited, and formatted to the point continuing to work on it is nitpicking the minutia—borderline OCD. All that remains is to work on the cover, publishing, and marketing, and then that's that. I'll have a book, published (seriously), and one of the most daunting, stressful, hated, agonizing, rewarding projects in my entire life will be no more.

What then?

Well, the marketing will be a continuous process. I'm working with Nick on these things, seeing as he has a better grasp on what to do than me. But I've been researching a lot lately and have found some strategies that might help, so we shall see how that goes.

Of course, this blog wouldn't be about me if something wasn't wrong with my body. So, without further ado, I present...my tenth joint replacement!

That's right, I will soon be into the double digits with replaced joints! That's only two away from tying the world record (which is kinda BS, because although the winners had twelve joints replaced, several were knuckles. I mean, seriously?). My right knee has been harrying me for a while now, and so a retaliatory strike is required in the form of a total knee replacement sometime in the next few months. The left knee will probably also need fixing soon, and replaced joints don't last forever, so I'm highly confident the world record will be mine at some point! I probably shouldn't be too pleased to get it, but if I have to deal with this crap anyway, why not get something out of it?

Before I sign off, I did have a couple quick closing comments.

• I am currently cover-less. If anyone knows, or is, somebody who does graphic design and might be interested in designing a cover for a memoir, I would love to hear from you or the person you know to discuss pricing and ideas.
• Since this is a self-published book (for now), if you or anyone you know might have connections to people/companies/non-profits who would be interested in a book about the difficulties survivors face in life after cancer, or interested in helping to spotlight the rarely discussed aspect of survivorship, I would be pleased to accept any help in this area. 
• I believe my book has the potential to help bring this very important issue into the public eye so cancer patients and survivors can receive help not just in preventative care, cancer treatments, and diagnostic tools, but in the battle to pick up the pieces once their cancer is in remission.

And with that, I bid thee farewell, until the next post. (Which hopefully isn't months and months from now. I'm working on that.)

Ciao
~Andrew

In a Sea of Chaos, Find the Lighthouse

I never would have guessed the title of this post would be so appropriate when it floated up from the depths of my brain to present itself, but we'll get to that later. (For clarification's sake, this was written after the rest of the post.)

I guess we'll start with the biggest piece of news. I'm almost at the end of the fourth draft of my memoir. Only things left after that is a read through to try to catch spelling and grammar mistakes and selecting sections for eradication to get the work count down further. If it goes according to plan, the fifth draft should be the last one. (For more updates on this and other projects, keep your eyes out for new posts on my writing blog: Make a Write Here) I thought I would be more excited, and maybe I will once draft four is done and dusted. But at the moment it's more of an anxiety trigger, probably because next I'll be moving from the thing I know, writing, to the things I dread, marketing and networking (both of which involve interacting with humans...egad!). I've marked out several avenues of approach, but that hasn't taken care of the Titanic in my stomach. I'm hoping that, as with other things that make me apprehensive, once I get to it I'll be fine. Now I just have to convince my brain that will be the case. Good luck, me.

Maybe that's not the biggest piece of news. Maybe having joint specialists tell me that the increased pain in my knees and ankles over the last couple months isn't going anywhere is bigger. Maybe seeing one of the top AVN (avascular necrosis, which is the bone disease I have that has caused many of my joints to collapse) specialists and having him tell me that there isn't really anything I can do to try to fix my crumbling bones other than replace them is bigger. Those are what dominate my thoughts as of late. That the only real solution is more joint replacements down the line when the pain becomes intolerable. The singular light in this pall of darkness is that the pain is manageable for the time being. But how much longer does that last? A year? Five years? Ten years? Ten months? Five weeks? Tomorrow? It's literally anyone's guess. It'll happen when it happens. I've started doing low-impact exercises to strengthen the joints and my body in the hopes it staves off surgery a bit longer. If not that, then at least the exercises should grant me a bit more muscular strength and support to draw from during the recovery process, which might make recovery progress more quickly. So that's good, right?

In my last post I talked about pushing harder to be social and how it was getting easier. In this post, we talk about backsliding. I've become increasingly reclusive over the last few weeks, and am only now starting to fight it again. It's another case of sticking to what I'm used to, even if what I'm used to isn't really all that great, like, say, surgery. There's comfort in familiarity, simplicity in what's already been established. It's such a constant theme in my life that I should probably think about shoving it into a book title or write essays about it. "The Siren Song of Familiarity." "Comfort in Stagnation." "Doctored Bundy, or How I Learned to Love Surgery." But moving away from that and back to listing off reasons for craving reclusivity (which sounds a lot less clunky than "reclusiveness," and I love words that whisper like liquid silk into my brain), I know my reluctance to engage in human contact is in part to do with the conditions of my joints, which has been become an increasing stressor lately as pain ratchets up and options diminish. I don't want to talk about it, because then I have to think about it, and when I think about it all it does is remind me of where I am and what sort of future appears imminent. I dunno, maybe I'm just trying to find excuses, reasons to explain and justify my lack of effort.

I think I just realized why I haven't written a blog in a while: because there doesn't seem to be much to write about other than more bumps in the Unmerry-Go-Round called My Life. Because I'm feeling particularly morbid and exhausted with looking for what's good when all I can find is more dismal news. I really have no idea what to talk about. Do I try to paint a cheery picture over the bleak canvas? Or do I leave it bare, the naked truth for all to see? I want people to see the truth, but I don't want to discourage people and make them pity me. My life isn't miserable, but when I try to look for  events worth writing about, I can't seem to find anything positive. It's in those little moments, getting into a pun match with my family, watching funny TV with a friend, inventing a word or phrase that tickles me, listening to music in the car and not caring who watches me sing and play air instruments, reading about space and Pluto, those are the moments with seemingly little importance to life's progress, and yet give life the color and pleasantness that keeps me going when all I want to do is implode and hide. Finding pleasure in the small things is what keeps the crushing weight of the Colossus of Bad News from squashing every bit of life out of me. It's what kept me (relatively) sane in the hospital when all I had to look forward to was toxic sludge and vomiting and oxygen masks. It's a revelation every time I remember this obvious, simple, yet transformative bit of insight.

Pluto

I started off this post with a title, which I quickly removed because I had no idea why I wrote it. "In a Sea of Chaos, Find the Lighthouse." It just came up, completely without context or reason. Maybe it's a lot more appropriate a title than I gave it credit for initially.  It's certainly a hell of a lot more fitting than I could have known when my subconscious floated it up. Freud might have been onto something.

~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...

End of Absentia

Hello all,

I guess I'm back. I mean, I am back, but the question of whether I shall remain back has yet to be answered. I suppose we'll all find out together.

The good news is that the surgery discussed in the previous post (I will end up getting to the Coming Soon section, but not now) went very well. It turns out that, in addition to the bone spurs, one of the screws from my ankle allograft in 2010 was loose, so that was taken out during surgery as well (I told him that another doctor said it might be loose, "I've known for years that I've had screws loose, but this is the first I've heard about the one in my ankle"). That was early November. It's been healing up very well, the pain is down and the flare ups of pain have become much less frequent. I'd call that a success. It has been good enough that I did a lot of walking on our family vacation to Oahu this last week (by the way, we went to Oahu), although my ankles weren't particularly pleased and I did spend some time in a wheelchair because of how painful and swollen the ankles were getting (see right: wearing a tight ankle brace does not really mesh well with very swollen ankles/legs). I'm planning on sitting and icing my ankles for the next couple days, that way my ankles return to normal as soon as possible.

After the surgery, I started to feel like I was returning to the mental state that had plagued me at almost the exact same time a year ago. It felt like my mind was beginning to slip again, and fear of pushing myself too hard and taking on too much led me to pull away from the world and try to keep my stress and anxiety levels as low as I could to avoid having another total nervous break. I'm hoping that I'm more stable now, and that this three-month hiatus can be broken without too much worry that I'm overreaching. It really bothers me, I feel like more of an invalid than I ever did with the physical problems, having my definition of "overreaching" be talking to people, writing, and taking a couple classes to finish up community college (which also bothers the intellectual in me, but after two failed attempts at UC schools due to bone collapses, I just don't want to go through the hassle for a third time until I'm in a much better physical, mental, and emotional state). But I've learned over the years that I can't compare myself to anyone else, or, at least, I shouldn't compare myself to anyone else, which is nearly impossible I'd like to add. It's a hard lesson, harder still to live by, but I'm doing my damnedest to follow it and take care of myself to the best of my ability, even if it feels a lot like failing (I just need to ignore that, it's hard, but I'm trying).

Inspirational metaphor goes here

Despite all this, I've been able to take some measure of comfort and hope from my memoir (Life Has No Title). A few weeks after my surgery, I decided that I'd spent enough time trying to save money by chopping bits out and sent it off to the editor. Soon, I hope to have it back so I can take a look at the notes and start with the finishing touches to have the writing and editing portion of this project complete. Then I'll be able to turn my focus toward marketing and networking, which is something I'm a bit antsy about, but at least I have faith that the memoir can do a lot of good and it's my hope that knowledge will help get me through potential rough spots that might come up in the final stages of completion. It also helps a great deal that the editor has already somewhat eased the anxiety about how good my book actually is by being kind enough to let me know that she likes the voice and the content and thinks it could be helpful to others. The narrative tone was my biggest worry about the writing aspect of the book, so that's a bit of a load off my mind. I'm really looking forward to reading her notes and starting work again on this project. I've been doing some writing in the interim, although more dabbling than anything else.

I think that's a good-sized post for now. I'm getting weird vertigo while looking at the screen, so I'm thinking this is a good stoping point. Hope all y'all had a good (insert preferred winter-related holiday here) and will have great 2016s.

~Andrew