No Surgeries? We Can Fix That

First, I want to thank those who participated in the poll to pick my cover. I have selected and finalized the design. So, without further ado...

I am very pleased with how it turned out. I feel it does an excellent job embodying my story and the truth of what life after cancer is really like.

My next post will talk more about the book, including its release date and an excerpt. Information regarding my book can be found here, or at the top of the page in the Memoir: Surviving the Cure section. 

Now, I want to share what has been going on the past few weeks with me.

A few weeks ago, I realized something astonishing. I didn't have a single surgery all of last year! That's right, 2016 is the first year I've gone without surgery since...well, I was diagnosed actually. That didn't sit well with me, so I'm having two surgeries—and possibly up to four—to make up for it. For sure, I know I have to replace my right knee (I did a partial replacement in 2012, but the damage in the original part of the bone causes a lot of pain). Also, I have a screw loose—but let's get back to surgery. I'll be having an arthroscopy on my right ankle to clear out arthritis and remove the screws from my 2010 ankle allograft (replacement). I also have to get my left knee replaced (same situation as right knee), and might have the rest of the screws removed from my left ankle (I had one removed in November 2015), but whether those take place this year or the next is still up in the air. But having both knees replaced will bring me up to 11 joints replaced—one off tying the world record! 

No, not THAT World Record!

Yesterday, I had my hips checked out. They've been hurting for the last few months. However, the doctor said they looked fine. I was glad to hear that, but then a little part of me whispered, "Yeah, but now you have to wait to replace them and get the record!" So...bummer? Somewhat conflicted, but definitely leaning toward being happy not to have to hack off my body parts.

On a different track, I've been engaging more in the cancer community, in particular the Leukemia and Lymphoma Society's online forum. Mostly, I give advice to people and discuss what life after cancer is really like, not what most people think. It's messy, there's usually numerous complications and problems (see world record attempt), and the amount of support is drastically reduced compared to when someone is actually going through cancer treatments. But that's why I'm writing my story, to educate the public on the reality of survivors. My goal is to help advocate for survivors to help get them the best quality of life possible. Fingers crossed. 

Until next time,

~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

A Joint Venture

Hi blog (he said sheepishly),

I'm sorry for neglecting you for the last couple weeks. To say things have been hectic would be putting it mildly. To say things have been stressful would severely underrepresent just how difficult it's been. A couple weeks ago I talked about my shoulder and my book, and really those two things have kind of taken over my life. Although to be fair, I don't really have much of a life to start with, having been busy trying to get this book done and going to school and not having a lot of time to spend with other people.  I miss other people, hopefully I can start hanging out again soon. It'll definitely be a lot easier to see my friends again once the rough draft is done and school is out for summer. But enough about that, I have some serious news to parse out. So let's get cracking, how's that sound blog?

Recap
Since my last post I've gone to see two other doctors. My general practitioner (who is a sports medicine doctor and does not specialize in any particular joint) told me he'd never seen a shoulder joint that degenerated in all his years of practice. This worried me for a bit until I realized he's not a shoulder specialist, so maybe it wouldn't be as bad as it appeared when I went to see the Sharp hospital doctor he recommended the following Monday (last Monday, a week ago).

Sharp Specialist
The Sharp specialist ordered a couple more x-rays so he could get an overhead view of my shoulder before I saw him last week. After a bit of a wait and a couple visits from his PA (physician assistant), the doctor came in and pulled up the x-rays. "I've never seen shoulders this degenerated before," he told my mom and I. Perfect, I thought bitterly to myself. It wasn't shaping up to be a good visit.

The doctor informed me that whereas the ball and socket joint normally forms a sort of ball and cup structure, my joints were so damaged that this structure had actually reversed to form a cup and ball. Due to this level of damage and because the bones were so worn away, he actually wasn't sure if he would be able to replace either shoulder at all. Normally the surgeon need a certain amount of bone in order for him to be able to do the replacement, but because of the severe degradation of the joints, the way it appeared from the x-rays, it would be next to impossible to do any of kind surgery. I can't say I was too pleased about that.

However, he did mention that (I don't know if "lucky" is the right word, because nothing about this feels lucky to me) there is a shoulder surgeon convention going on in San Diego in the middle of June, so the doctor would take my x-rays with him and "shop around" the images to see if anybody had any ideas. I didn't want to wait until June, that's two months from now (it's mid-late June). As helpful as it would be to have all those specialists taking a look, I'd rather get more information now.

Scripps Specialist
Before I saw the Sharp specialist, I'd already scheduled an appointment the following Monday with one of the top shoulder surgeons in California. I really wanted that third opinion to be a good one. Even more so after the less than pleasant visit the week before. It took nearly an hour to get to see him, but once he came in and started to look over my the x-rays and check my range of motion, he got right to work.

Again, as with the Sharp doctor, he told me just how bad my joints were and pointed out the structural reversal going on. He tossed around a few big words and drew some pictures on some paper and said most of the same things I'd heard exactly one week ago. However, the big different is that he didn't think it was unfixable. While the damage was extensive, there were ways of doing the surgery and getting the joints replaced.

The more damaged shoulder might be a candidate for a normal shoulder replacement, but the left one is shaped different and it would be extremely difficult to do a normal replacement with that. Instead, he talked about a surgery called a reverse shoulder replacement, which would, in effect, reverse the normal way the joint works, pivoting the head of the humerus (upper arm bone) around a shaped structure in place of the socket. The problem with doing this surgery is that it is a measure of last resort. Normally doctors like to use normal shoulder replacements first, and then use this when no other options is present. In fact, they don't really like doing this surgery on anyone under 70 because the joint wears out after 8-10 years and then it's iffy on what would be available to do next. The left one would almost certainly be a reverse, the right one too probably (although there's still a chance for a normal replacement).

In the end, he decided CT scans of both shoulders would give us more information to work with, which will allow for a more accurate assessment of what can be done for my shoulders. Those should be scheduled either today or tomorrow and then hopefully I'll get them done soon so I can get that information I so desperately need. The sooner I get the joints replaced, the easier it the surgeries will go. The longer I wait, the more degeneration occurs and the more pain I'm in, and the harder both the surgeries and life will be. I'd rather just get these done with, I don't like waiting. At least I shouldn't have to wait until June to get better answers, so there's that.

Next Time
I've been working a crazy amount on my book. Progress shall be updated. Stay tuned.

Your disintegrating master,
Andrew