Faceless Blog

Whew, almost forgot where this blog was, it’s been so long since I’ve updated.  Honestly, I can say there are three main reasons for that.  1)  We got a PS3.  2)  We got PS3 games.  3)  For a long time, I was stuck in a holding pattern.  Only now, roughly four months after getting out of in-patient therapy at Passavant hospital, is the blister that I developed at the end of my time there healed up well enough to permit me to start my out-patient physical therapy.  

That’s right, folks, on Wednesday, July 6th, I will begin my out-patient physical therapy…one of the last phases of my rehab until I am completely back on my feet!!  I could not be more excited about this, especially since my physical therapist will be Casey, who was my PT guy back when I was just dealing with the wheelchair.  (Do I have a surprise for him!)  

I’m also going to have something very cool to report within a week or two.  There is a gift waiting for me at home from someone very special, and I can’t wait to share its story with you all.  For now, though, just hang in there.

I will be posting regularly with details of how PT is going, now that things are starting back up again, so thank you to all the folks that hung in there, or are coming back after a while (like me).  Later!

The “Dear 16 year old me” video that’s been going around reminded me of an old note I wrote on Facebook a while back.  It still rings true to me, so I thought I’d repost it here.  So, here you go!

An open letter to the individual who would have ended up with cancer,


Dir Sir or Madam,

I’ve said since this whole ordeal started that, “if this had to happen, I’m glad it happened to me, and not someone who wouldn’t be able to handle it.” Well, while there are days when it’s more difficult than others to believe that, I stand by that statement. And though I do stand by it, I wanted to write this letter to you to make sure that I haven’t gone through this for nothing.

Are you young? (You probably are, as my type of cancer typically only affects children or infants). Get out there, pick a sport that you love and play it. Don’t spend your summer days cooped up in the basement. DO something. I’m not even going to tell you what, that takes the fun out of it…but pick something you like, and do it…often! Go to an amusement park, visit the zoo, go see the paintings in the Museum of Art. Swim in the ocean, walk in the sand. Try and do something new every weekend, just to broaden your horizons and find new and different things that you like.

Are you older? Take a road trip to somewhere you’ve never been before. Go camping and catch your own dinner in a nearby stream. Be active in your community. Plan a three day weekend getaway to some nearby tourist attraction that you’ve never taken the time to check out. Try to get out and see at least one “Wonder of the World.” (be it one of the Wonders of the Modern World, Ancient World, Natural World, etc.) Throw a bonfire party with as many friends as possible…roast hot dogs if available. Thank a nurse. Shake a doctor’s hand. Live. Live hard and live long.

Of course, these are only suggestions. The real trick is to take the spirit of this letter, and make your own life out of it. Every day that I feel trapped in this chair, every time I’m stuck in the house or feel the loss of my independence…I think of you, out there, making the most out of the life that you have, and it helps.

I’m sure I’ll never know who you are. That’s ok, I don’t need to. Just promise me that you’ll do your best, and that will do. 

Sincerely,
Jeff (aka Facelesscog)

Saturday at PAX East started with working the lines some more for the Cookie Brigade!  (I really tried to get as much time in as possible, and I think, by the end, Becca and I really had it down to a science.  Next year, the only thing we can do better is better cookie diversity and scheduling.)  After an hour or so of working the lines, it was time for the Make-A-Strip panel.

As with the Q&A panels, microphones are set up on the left and right side of the theater to allow fans to ask questions of the guys while Mike is drawing the comic.  As always, there was a combination of interesting questions, funny remarks and odd requests.  Like last year, there were a lot of people who were at PAX for the first time and, as always, they got a lot of cheers from the crowd.  Once again, it demonstrated so nicely the community of PAX (the best example of that to come tomorrow).   

I’d also like to take a moment to comment on my phone.  This is the first year that I’ve had a smartphone, and thus the first time I’ve had a smartphone at PAX.  So, having experienced both sides of the debate, I can honestly say that my phone (a Droid X) definitely improved my PAX experience.  Being able to constantly update and check Twitter (to announce where we’d be distributing cookies or keep up with friends) from using one of the PAX East apps available in the Marketplace, it just made all the difference.

Speaking of seeing things from two sides, I also met a girl on Saturday that reminds me of that topic.  (sorry, I don’t remember her name)  Her leg was in a temporary brace/cast, and a guy was pushing her in a wheelchair.  She had a medical badge on, of course.  When I saw this, it immediately occurred to me that, while she got to experience PAX this year behind the medical badge, next year would be entirely different.  After being able to get into every panel first, and being let on to the vendor floor an hour early, she’ll be stuck with the rest of PAX, waiting in some pretty intense lines.  Honestly, that medical badge is one of the few perks of the whole “no leg” thing.

In the afternoon, we went to the Females on Female Characters panel, partially because Becca wanted to see it and partially because Kathleen from Loading Ready Run was going to be on the panel.  It turned out to be a very intelligent and entirely too short discussion on the state of female characters across all the game genres, as well as the kind of female character that’s really needed right now.  All in all, we really enjoyed the panel and I was glad to be able to shake Kathleen’s hand afterwards.  Lisa Foiles, who was supposed to be on the panel, was strangely absent.  It’s a shame, I was hoping to meet her.

We finally got to have a real, sit-down dinner with a pretty big table of friends at the weird little lobby-restaurant in the Westin.  As always, I got to have some wonderful conversation with my friends, as well as laughing until I hurt.  What I didn’t count on was a surprise sneak attack.  It was my own fault, really.  Since I’ve gone through chemo, I’ve tried to limit my red meat intake.  It just doesn’t agree with me that much any more.  Well, I must have been feeling overconfident, or I got swept up in the PAX experience or something…because I ordered the TNT Burger.  It was a big, thick, red-meat burger with buffalo sauce and blue cheese.  Although mine seemed to come without the blue cheese (and we had no time to send it back and wait for a new one), what it did contain was a GIANT BEEF PATTY.  So…while it tasted great, (really, it did) it ultimately wrecked me.  More on that later.

After dinner, it was finally time for the Loading Ready Run panel.  I was anxiously waiting to see which LRR crew members had made the trip from the Moonbase (their headquarters, near Vancouver, Canada) this year.  Last year, for the first PAX East, nearly all of them had made the trip.  This year, money must have been a bigger issue.  We got to the panel to find out that Graham, Kathleen and Paul were the only ones who had been able to make the trip.  Fortunately, even these three are funny enough that it was still an excellent panel…or, it would have been an excellent panel, if my stomach hadn’t chosen this moment to start doing back-flips.  After several trips to the restroom, I made the call that I was done, and had to return to the room for the night.  

Sadly, that was how my Saturday night ended.  I took some stomach medicine and feel asleep on my side on the bed.  Oh well, at least it was the right bed.  So, I entirely missed the Loading Ready Run screening, complete with live commentary from the three present LRRites, which I was really looking forward to…but there’s always next year.  Steph (who was sharing our room) and Andrew also went to a nearby concert that night and had themselves a wonderful time…but if you want to read about that, read their blogs!  :)

If you’ve been following these updates, you are familiar with the problem I’ve been having with my right knee.  If you haven’t, in summary, it’s severely arthritic and has been causing me some pretty intense pain when I put any kind of weight on it.  My therapists, hoping to find some other source of the pain, called Bjorn (my prosthetic mechanic) to take a look at the right socket and leg this afternoon.  Well, here’s the awesome news:  turns out, there was a problem…and he fixed it! 

When my knee first went wonky, it must have made the leg swell a bit.  When it swelled up, it no longer fit all the way in to the prosthetic, causing some pretty intense pain when I tried to put weight on it.  Bjorn removed the white plastic liner from the leg, then put it back on my leg.  I stood back up and the difference was like night and day!  I was able to put nearly ALL of my weigh on to the right leg, and let go of the walker to stand and balance, neither of which were possible for the past few days!

Since the adjustments were made at the end of the day, after walking all day on my leg the wrong way, my knee was still pretty sore.  Also, while this will help (a LOT), my knee is still arthritic, so there will always be some issues.  It seems; however, that this will now be, at the very least, manageable.  (unlike the pain I’ve been experiencing for the past few days)  And with this one small adjustment, my optimism meter, which had been dipping slightly, is filled back up to max.  :)

Well, it’s official.  PT has actually started!  Today was my first full day of actual therapy, both PT and OT.  (Physical therapy and occupational therapy)  It’s now about 10:00 in the evening.  Becca’s gone for the evening and I’m getting ready to hit the sack for tomorrow.  Before I do, let me give you a quick run-down of how things went today.

The morning started with OT-ADL.  (that’s Activities and Daily Living)  This basically boils down to helping get you set to be on your own for all your daily personal activities.  (grooming, dressing, etc)  Fortunately, I’ve had a long time to adapt, so I don’t really need any help or training in this area, and this part went very smoothly.  In the coming weeks, I’ve been told, focus will shift to handling the same daily activities…but while wearing my legs.  THAT, I will need to practice.

After that was out of the way, it was on to the morning physical therapy.  Today’s morning PT consisted mainly of exercises to strengthen my leg and core muscles.  I was on my back lifting my legs, bending my knees and clenching muscles that haven’t been clenched in quite a while until I was starting to really feel it, then the parallel bars finally opened up.  (PT is conducted in a large, gym room where many patients are being treated, so sometimes, there’s a wait for equipment.)  By the time I got over there and got my legs on, I only had time to stand and balance a little before my PT time was over.

My afternoon OT was very simple, but effective.  I was put on the hand-bike, which looks like the business end of a stationary bike that you operate with your hands.  My therapist had me back my chair up from the unit a little, so that I had to lean forward in order to peddle with my hands.  This way, the core muscles, as well as the arms, are worked.  I would peddle for five minutes on moderate resistance, then take a five minute break…then repeat two more times.  I also met Dr. Sing for the first time.  He’s the head honcho here, and the doctor that Hanger had nothing but good things to say about.  He is apparently renown for his work with amputee rehabilitation.  He agreed, as many have, that it’s perfectly reasonable to believe that I will walk out of here, and eventually with no assistance.

After a short break, it was time to head back to the gym for my afternoon PT.  This time, it was all parallel bars, all the time.  My legs were still waiting for me at the bars, so I put them on as soon as I got over to the bars, and began my exercises.  Among these were making a movement similar to the one you’d make if you were spinning a hula hoop…though drastically reduced in speed.  I also had a pretty grueling time with one in particular where I had to simultaneously shift my balance from one foot to the other while moving backward and forward…which I’m not explaining well enough to illustrate why it was so hard, I’m sure.  

Basically, today has clearly illustrated several points that we all already knew.

1. I’ve been in a wheelchair for a long time.
2. As such, there are certain muscles that need a lot of work.
3. The coming weeks are going to be hard…very hard.
4. The result is absolutely…without a doubt…going to be worth it.

Talk to you tomorrow, everybody.  Your emails mean a lot to me, and I’m sure they’ll mean even more as this goes on.  Thank you for your support!  I feel like we’re all going through this together!

A while back, I had made the promise that I was going to blog/document the whole process of getting my prosthetics, and getting back up on my feet.  Well, welcome to part one!

So, let me begin by describing the casting process!

First, the prosthetist puts a white stocking on the end of the leg.  On this, using a special pencil dipped in water, the prosthetist marks any areas that are incapable of properly supporting weight.  This includes, for the most part, areas where bones are close to the surface.  Once those areas are marked, the prosthetist dips long plaster cast strips in water and wraps them around the leg, forming a hard cast.  That cast is then slid off of the leg, with the markings from the stocking now transferred to the inside of the cast!

With the casting done, the prosthetist takes that cast back to…I’m not sure, his magical workshop?  Admittedly, I’m unclear on that part.  What I do know is that the prosthetist, rather than making an exact copy of the cast, shrinks it by around 5%.  Now, here’s the tricky part, and the reason for the markings…he only shrinks the parts that remain unmarked, which is to say, the areas which are capable of supporting weight.  This ensures that the socket fits snugly, and that the sensitive areas of the leg don’t get too much pressure applied to them.

Now, a week later, the “check sockets” have been made.  These are clear plastic versions of the final socket, made to test the fit.  They’re clear so that the prosthetist can see if the socket is too tight.  (like when you push your face against a window)  A silicone gel sleeve is slid over each leg, over which the socket is fitted.  In my case, the sockets have a one-way air valve in the back, which forces air out and doesn’t allow it back in.  Once the socket is in place, a second silicone sleeve is rolled into place covering the end of the socket and the bottom of the leg, forming an airtight seal and keeping the prosthetic firmly in place.  A metal pylon extends from the bottom of the socket and connects to the prosthetic’s foot.  In my case, both the socket and the foot will be carbon fiber, making the limb light and strong.  

The final step of this process is for the patient (me) to stand up and walk a few feet using a set of parallel bars.  This way, the prosthetics can be tested for comfort, balance, etc.  Mine, as it turned out, needed a slight adjustment on the pitch of the feet.  

That’s it!  The next step, after a quick week in the hospital for surgery to close a pressure wound, will be to have the legs delivered to me at physical therapy!

For those of you who missed it, pictures from the day can be found here.  Video can be found here.