When Surgery is Good News

Hey readers,

So we're going to be going with a relatively short post this day. I suppose it's a good thing, not having that much to report and update you on. Mostly it'll be focused on news with my ankle.

After getting an MRI and some x-rays, I finally managed to get in to see my new ankle specialist. I went through the whole routine of filling out paperwork and running out of room where it says "List all surgeries with approximate dates" and having various nurses and doctors saying "Wow, aren't you a bit young for all this?" and "I'm sorry you had to go through all that." It's funny to see trained medical professionals act with the same stunned uncertainty that I see when "normal" people find out about my medical past and can't figure out how to express their pity and/or sympathy properly. But I did like the doctor, he listened to my opinions (I can't work with doctors that assume I know nothing and won't factor in my suggestions or treat me like an ignorant child), showed me what he saw in the MRIs and x-rays, and freely admitted that this was an extreme case and, rather than go forward assuming he knew best, wanted to get the opinions of some other doctors to see what they thought. I always like that, because I've had more than my fair share of arrogant doctors who think they know best and then turn out to be totally wrong.

The bone spurs are visible just to
the left of the screws

There is some separation of the bones that
is usually associated with older people

Now let's get into the specifics about the ankle. The x-rays and MRIs showed that there are some bone spurs on the inside portion of my left ankle, no real news there. However, he also spotted a stress fracture on the medial malleolus (lower tip of the tibia), which is right above where most of the pain has been located. It might be possible that at least some of the pain comes from this stress fracture. These are all pretty sedate problems for me, things can will either heal on their own or require basic surgery (which I'll discuss shortly) to fix.

The black areas surrounded by white
are where the AVN is most noticeable
(A dove-shaped area above and a
bridge-shaped area directly below that)

However, the MRIs showed a much more serious potential problem in the future. Back in 2010 I had ankle allografts on both ankles (basically removing part of my ankle and replacing it with donor bone) that helped with the damaged portions of my bones caused by AVN (a degenerative bone disease I got as a result of my cancer treatment's treatment, my not so little souvenir I picked up when I had to survive the cure). These donor bones were healthy and over the last few years they've looked very good on x-ray, everyone's been impressed by them. But looking at the MRIs of the ankle, the specialist saw that the AVN was now starting to affect the fresh, healthy bone. The AVN is very pronounced in the lower "knob" of the tibia and also in part of the talus (the part that had been replaced five years ago). Although it probably isn't causing my pain now, since AVN usually only hurts when it reaches the surface of the bone, which it hasn't done yet in the aforementioned areas, it will require additional surgery at some point. It could be years or decades from now, or it could be months, it's hard to say. Basically it'll happen when the pain comes back because of the AVN or if the structure collapses like it did back in 2009, which is what prompted the surgery in the first place.


Fortunately, the AVN is not an immediate problem, but it is something to keep an eye on. The more immediately problem (bone spurs) are a lot easier to fix. My doctor would prefer to be on the cautious side and err toward a minimalistic approach to healing, which I can totally get behind. The plan is to do arthroscopic surgery, which uses a small camera and instruments to see and clean out the damaged areas of the ankle, and then see if that helps sideline the pain for a little bit. Compared to the huge joint replacement surgeries I'm so familiar with, this is far less intrusive and debilitating. After the surgery, the specialist wants to see me every 6-12 months to get images of my ankle so we can check on its progress and catch any further damage early on, before it has a chance to morph into something major. Until the surgery, I've been given orthotics and a brace to help take some of the weight off of my ankle and alleviate the pain as much as possible. And I'll be back to using my cane to take weight off of my ankle. (The doctor felt bad for me, since I would "stick" (terrible pun) out, but told me I could use it to whack people. I think that's the moment I realized how much I liked this guy. Beating people with canes always makes me think of the man who tried to assassinate Andrew Jackson and the 67-year-old president wailed on the guy with his cane). All in all, it feels like this is something that can be taken care of easily and I'll be able to move past it with relative ease. I don't have a date yet for the surgery, but I'm supposed to get a call from the doctor's surgery scheduler to get that sorted out.

Until then, I'm going to keep chugging along and staying productive.
Ciao

Coming soon:
Keep an eye out for the next blog post, which will throw some hard truths and harsh spotlights on an issue that underlies everything in my life, and in the lives of millions and millions of other cancer patients and survivors.

PS: I don't think this was nearly as short as I thought it would be. Sorry for accidentally lying to you.

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