Snowboarder vs. Awesome Friends

I've only been back to work a few days.  It's been awesome.

First, my co-workers picked a theme.  Amputee pink flamingos.  There were 100 of these amputee flamingos scattered across my building.  I still haven't found all of them.

Crocheted snow hat, check.  Custom t-shirt with my nickname from coworkers, check.  Yes, this is my tough face.  I constantly look like this.

The back of the shirt continued with the amputee flamingo theme.  Pretty rock solid, except he's clearly wearing a ski boot.

This afternoon I was presented with with this amazing trophy.  Yes.  That is bark from the tree I hit.  A friend of mine captured it from a ski trip to Breckenridge in 2011.  There's a button on the side that, when pressed, plays this song from Karate Kid.

Last Wednesday I had the chance to meet another amputee at OPC, Chris.  It was an arranged date by our prosthetists, Megan and Elliot.  I've been exhausting them with too many questions.

Chris is a personal trainer.  In 2010, a few months after my accident, he was struck by a drunk driver head on while on a dirt bike in his neighborhood.

The doctors were able to salvage his right lower leg with this giant bar.

I honestly have no idea how this femur healed.  Seriously, look at this!  This is from his left leg, which was amputated below the knee.  Chris didn't have a choice.  He was in a medically induced coma because of how bad the injury was, so his wife made the decision for him.

Remember, Chris is a personal trainer.  Can you imagine how tough of a decision this must have been?

Two things.  One.  When Chris woke up, he said he'd run again.  Two.  When doctors told him he had a 50% chance of his femur healing, he said not to worry, it would.

That attitude is inspirational.

See Chris run for the first time on a cheetah leg outside OPC.

See Chris box jump three feet.

See Chris dominate the kettlebell.  Without a leg.  Instant source of inspiration.  He continues to personally train people with two perfectly good legs.  I suspect they are not allowed to quit any exercise.  Check out Chris's 2016 Paralympics website, he could use your help!

I go into OPC tomorrow morning for another test socket process.  My stump has shrunk some more in my new test socket, so I imagine we'll consider a smaller liner and another casting tomorrow.  I'll try to get some video walking in the parking lot with the new fit.

Dr. Attinger emailed me today.  The operation pictures will be here this weekend!

Sorry for the long cliffhangers on the last two parts in the Sixteen Things Series.  I'm off work tomorrow and Wednesday, so I'll have some time to finish those up.

Adversity, Women's Deodorant, a Stumpdate, and I Will Hunt You Down

No Handlebars

About a month ago, I had one of my two legs removed below the knee.  It was my right leg.  An important leg.  I used it to smash homeruns during my short but storied kickball career.  The amputation was easy, but these are things you already know.

When I woke up from surgery on June 14th, I was told I'd walk by August 1st.  I grabbed that milestone with sixteen days to spare.  But I didn't just grab it.

I no-handlebarred it.

Growing up on the streets as a kid, that was a crowning achievement.  And you had to make it obvious no hands were touching your Huffy.  This move — or even better, the no-handlebars/no-look combo — relinquished control, impressed friends, but increased the risk of a crash.

Perhaps the kind of crash that ends with a faceplant into your parent's sweet 1991 Buick Regal Sedan.

Taking my first steps a month after cutting my leg off without using the handlebars is an achievement.  I recognize this.  And yet I walked out of Orthotic Prosthetic Center frustrated, angry, and sad.

I was in a glass case of emotion.

My stump was sore.  But my emotions were even more sore.  It was frustrating to not understand why I felt bad when I knew I should have felt awesome.  I told Brooke later that night I envisioned running immediately.  But that was not my problem.

The problem was I had let go of the handlebars and I had stopped looking ahead.  It was the dreaded no-handlebars/no-look combo.  I crashed.  My amputation had been too easy.  And now, finally, it was hard.  It was painful.  I have a recovery in front of me.

Here's a brief excerpt I edited out from the sweet montage I put up last week.  This was my first attempt to remove the socket from my freshly trimmed leg.  In this clip Megan, my main certified prosthetist and orthotist, explains to me for the first time how the socket works and how to get out of it.  As you can see, it was a challenge for my massive biceps and triceps to remove.

This went on for hours.  Not so inspiring.  So these clips were cut from the montage.  It's the same reason I haven't updated the blog since last week.  I don't write unless I've come through the other side of the problem with a reason to have a positive attitude, some unique insight, or suppository jokes.

The reality of the situation was I lost sight of just how big of a decision this was.  I knew it was big.  I knew it was final.  But I hadn't been on the other side until now.  Now I was swimming in the consequences.  I have a leg that shrinks faster than the test sockets can be made.  It's frustrating.  And every amputee goes through this.  I've fortunately got an awesome team and network of amputees to talk to about this process.

Earlier today, I met with Elliot and Megan to make a new, smaller test socket.  Because my leg shrank one centimeter in circumference in the last few days, we switched to a smaller liner and recast my leg for a new test socket.  Elliot expects the stump to shrink even further in the next few weeks.

Tomorrow I return for another test drive.  I have high hopes.  As this process improves, my confidence grows.  As my confidence grows, I pay more attention to LivingSocial emails.

In the meantime, I've had to "sock up" to make my now large test socket comfortable to wear.

That's every sock Megan hooked me up with last week just to prevent the bottom of my stump from bearing too much weight in my socket.

Static electricity and sweat.

The stump is doing well.  The picture above was taken the day after first-walk day, so you can see some of the bruising that's since dissipated.  It's still sore, but most of that pain is caused by the large socket banging against my tibia.  The soreness I have now will be resolved with a tighter fit tomorrow.

The liner is very comfortable.  I've started wearing women's deodorant on the stump and leg to prevent sweating.

Apparently this is one of only a few products that actually help prevent liner sweating.  It works like a champ.  And I finally smell light and fresh.  Finally.

Earlier this evening I had dinner with some good friends I hadn't seen in years.  My friend Luke mentioned he had heard that a stand-up comic is using this blog in his routine.  Specifically, he's taken the second paragraph from The Story page and converted it into a joke.

He's stealing my laughs!

I did stand-up in college.  Briefly.  Like, maybe five times.  I had one great show.  Bombed the rest.  It's always been a dream of mine to do stand-up, or at least do something funny.  It's the leading cause of my obnoxiousness (I try out material on people non-stop to see what sticks).

In fact, I had a friend tell me that I probably got this amputation so I could make penis jokes.  That is 5% accurate.

Those laughs are mine.  I'd like them returned.  I now have a new mission to discover this stand-up comedian.

Finally, I have not forgotten about the Sixteen Things Series.  A video is coming soon that continues that series.  Soon!

One Step Back to Snowboarding

Walking Day Approaches

Brooke right after Elliot said I am walking this week.

Megan, a CPO, explains something to me that I knew I'd forget.  I forgot.  Too excited.

My negative casting of my residual limb. 

Here's what it looks like inside.

Just making sure there weren't any Skittles in the mold.  There were not.

Here's how the mold was created.

No blog post is complete without a gross video or picture. Today was such a uniquely awesome day that I had to put the pictures and videos first. This morning, Dr. Attinger quickly removed my sutures and cleared me for take-off.  He said if I had a leg today I'd be walking today.  With respect to the pictures from the surgery, he hasn't had any down time to get them ready for me.  He asked that I pester him through his home email address to get copies. Easy, I dominate at that. After the sutures were out and we were cleared to work with Elliot, we headed over to Orthotic Prosthetic Center to squeeze into his schedule to see him.  He had asked us to try coming earlier during our last visit.  After looking at the limb, I asked Elliot about the immediate timeframe.  How soon will I be able to walk?  I was under the impression it could take up to a week or so to make my new temporary leg. Wednesday. It blew both Brooke and me away.  Words cannot describe how excited we are about this week.  My walk day all depends on when my foot arrives in the mail.  We're scheduled to see Elliot again Wednesday morning assuming the foot's sitting in a UPS box that day. What an awesome week this has been for both Brooke, who just passed her Family Nurse Practitioner Boards, and this guy. I also wanted to say thank you to everyone for the donations so far for the Super H 5k in September!  I was also blown away by your generosity.  The last few days has been a rush, and it looks like it isn't going to stop, but I will make sure to write each and every one of you individually a personal thank you.  Because you rock.  If you live in the DC area, expect an email from me shortly asking you to join the team, because, let's face it, you have no excuse.

Stumpdate #NSFT

This will be a quick update.  The stump's continuing its domination of healing.  Early tomorrow morning we see Dr. Attinger to get the sutures out, hopefully get our approval to work with Elliot, and really really hopefully, get my hands on those operation pictures.

This post is definitely Not Safe For Troy (#NSFT).

I'm planning a video edition of Part 3 of The Sixteen Things.  It's taken some time to come up with ideas for it, but hopefully I can pull it together quickly.

We're excited about tomorrow!  I'll update you all on Twitter as soon as we find out how things are going tomorrow.

Amputee Support Group and "Super H"

I'm enjoying these introductory picture teasers.  Runners?

Last night I attended my first amputee support group and this morning, because of that meeting, Brooke and I have put a team together for a 5k race on September 22nd.

I don't even have a leg yet!  Here's how it happened.

Rebecca Dean, from Dr. Attinger's Center for Wound Healing, is the group's organizer.  She just returned from the Amputee Coalition of America's National Conference in Florida with fresh enthusiasm and ideas to expand the group beyond a monthly meeting in a hospital.

Before the meeting she asked if I would speak to the group about my story, why I decided to get an amputation, the blog and ultimately how Brooke and I have tried our best to make snowboarding into a tree a positive and humorous experience.

It was an easy sell.  Of course I was in!

I enjoyed the opportunity to meet with everyone individually after speaking to the group — amputees, nurses from Dr. Attinger's office, new and old amputees, and even Dr. Steinberg and some of his med students (who were either required to attend, seeking extra credit, or were hunting for the free food).  Dr. Steinberg is an Associate Professor of Plastic Surgery at Georgetown and Co-Director of the Center for Wound Healing.

I was blown away by how diverse the group was and realized every single person in that room had dealt with an insane amount of adversity.  I'm talking about the "you had better be sitting down for this" type of adversity.

I tried to speak with as many people as I could one-on-one.  But there was one couple that Rebecca introduced us to, Joe and Jenny, that I've continued to think about since last night.  Like me, it was their first time to attend the support group.  I can't remember how long we spoke to one another.  I was enthralled with their story.  Joe's had thirteen surgeries to salvage his left heel.  It was destroyed in a work accident two years ago.  He's in pain.  All day.  Every day.  Do you remember me telling you how happy I was to be taking 600 mg of Gabapentin (Neurontin)?  He takes 2100 mg a day, along with morphine.  Joe can't walk.  He rocks out in a wheelchair.

The good news?  He's a Redskins fan.

Joe doesn't have an amputation yet.  He's only considering it.  And you could tell an amputation was a more frightening prospect for Joe to consider than continued years of surgeries, hospital stays, and life in a wheelchair.

It's that classic Hard Decision many of us have had to face.

Joe, Jenny, Brooke and I hung out well after everyone else had left and kept sharing our experiences with one another.  We exchanged information so we could stay in touch.  As a couple, it's tough to go through recoveries like this.  It's even harder to do it alone!

Harry "Super H" Freedman

I also had a chance to meet Harry Freedman, also known as Super H.  He's an above-knee amputee and sees Elliot at Orthotic Prosthetic Center as well.  In fact, Harry mentioned he'd heard about me during one of his visits at OPC.  

In 2004, at the age of 54, an 18-ton front loader backed over Harry's leg.  Up until the accident, Harry was extremely active — biking, running, and swimming.  According to this Washington Post article, in response to his accident, his awesome friends and family "raised $40,000 to defray the cost of prosthetic cycling and running legs by organizing a five-kilometer race, dubbed the Super H in honor of Freedman's Superman-like recovery."

The race is called the Super H 5k Run Walk & Wheel.  Proceeds from donations to teams go to the Washington chapter of BlazeSports, an organization that runs free sports leagues for adults and children with disabilities.

What an awesome event!  So to officially kick-off my life as an amputee, this morning Brooke and I signed up for the race.  If you'd like to join our team, you can sign up to race with us here.  Or if you can't walk, wheel, or run the race, but you'd like to contribute to the cause, please feel free to make a small contribution!

I know I don't have a leg yet.  But there's a dude that crutches the entire Super H 5k every year!  And Harry said the course is not easy.

I hope I get to meet this guy!

I have no idea how well I'll be able to walk by September, but I was inspired by the support group and all of the stories I heard — including Joe's and Super H's unique stories.  So I had to take the plunge!

Not to be disrespectful to the Super H 5k shirt, but the Snowboarder vs. Tree team is totally going to have our own awesome and custom racewear.

Snowboarder vs. Medical Science Paywalls

Medicine Art

Before my accident, medicine appeared to be part science, part chance.  Science led to a medical procedure with some chance of success.  This chance depended on a number of risks and was measured as a percentage — a number.  

Since the accident, I've learned medicine is also part art.  You'll probably hear this word when things go wrong.  We heard it when we discovered an infection and found out later that year the ankle enjoyed staying broken.

When most doctors tell you medicine is an art, they're actually talking about that chance of success — that number.  The statistical chance to medicine.  There are a number of factors, forces outside of their control, that decide where the chips fall in your recovery.  It's their way of saying medicine is not an exact science.

Unfortunately, the phrase, "art of medicine," is misused like this frequently.  There are no external factors in the art of medicine.  When a surgeon leverages his unique intuition and experience to deviate, react, and invent in service of a patient's best interest — that's art.  In the operating room, the surgeon is an artist.  He's picking Hansa Yellow Medium over Yellow Oxide (please find a new surgeon if he spends his time painting you yellow).

Medicine is an art.  Each surgeon has unique intuition and experience.  No two artists are the same.  The art of medicine is why you get a second opinion.  In fact, as a patient, it's your distinct privilege.  But as with all privileges, this one comes with some baggage: responsibility.  

Your biggest responsibility as a patient is to be informed.

Paywalls

Unfortunately, it is scary-difficult to be an informed patient.  I've been a patient and a writer for this blog for over three years.  Both duties require that I spend much of my time on Google and Google Scholar.  But those resources only go so far.  Most of modern medical science sits behind a paywall.  

Alex Mayyasi, a writer for the Priceonomics.com blog, wrote this great piece on science paywalls in May.  He highlights the enormous costs of obtaining access to scientific knowledge and also calls out the egregious profit margins publishers like Elsevier make — in the neighborhood of 36% — on scientific research they didn't even fund.  It's nuts.

For a few years, while my wife was in nurse practitioner school, I had an insider behind the paywall.  I had access.  Her university paid hefty annual fees to these publishers so that students like her could have access to the information.  I used Google to find interesting abstracts and asked her to download the full-text versions.  I'd use that information to do the research and keep you informed on the latest developments in ankle arthritis medical science.  Now that she's out of school, I'm an outsider again.  Like most of the American public.  There is a significant paywall between us and the medical science we need to be informed patients.  And it's not going away anytime soon.

Let me give you an awesome example.

Dr. Attinger and his residents published an article this year on his unique below-knee amputation technique.  The title of the article, a mouthful, is, "Below-Knee Amputation with Vascularized Fibular Graft and Headless Compression Screw."  It was published in the Plastic and Reconstructive Surgery Journal, owned by Lippincott Williams & Wilkins (a publisher like Elsevier).

A full-text version of this article is not freely available on the Internet.  It sits behind a paywall.  You'll only find the abstracts and tiny thumbnails of the pictures in your Google searching.  If I want to get a legitimate digital copy of the paper, I could pay $873 a year for access to the journal.  If I'm not willing to shell out a grand a year (which if it isn't obvious, I'm not), I could download a PDF of the paper from the journal's website for only $62.54.  There's no way I'm paying that much money for a digital copy of a paper that is only five pages long.  

I need a chalkboard to diagram how this works.

However, there might be a way around the paywall.  Fasten your seatbelts.  It's going to be a convoluted ride.

First, I went to the National Center for Biotechnology Information (NCIB).  Again, I only saw the abstract, not a full-text version of the article.  But with this website, I have the option of ordering the article through a service called LoansomeDoc, sponsored by the National Library of Medicine.  This service allows users to obtain full-text versions of medical articles from participating libraries across the United States.

The signup process for LoansomeDoc is arduous.  To use this service, you must be sponsored by a university library that's willing to serve the general public if you do not already belong to it.  The only library listed for Washington, D.C. was the Howard University Health Sciences Library.  And I couldn't just automatically select this library and continue with my LoansomeDoc registration.  No.  I first had to contact an administrator at the Howard library to obtain an authorization code.  I left a message for the admin asking for my LoansomeDoc authorization code.  Twenty bucks says the guy has no idea what I'm talking about.  If and when I get the authorization code from Howard University, I can complete my LoansomeDoc registration and request the full-text article.

The article orders are not free.  Each library charges delivery and processing fees for LoansomeDoc article orders.  And that's only if they have access to the Plastic and Reconstructive Surgery Journal.  I have no idea if these fees will be close to the $62.54 the journal was going to charge me for the full-text version anyway.

It's not just a paywall that stands in our way.  There's another wall between us and the information caused by the convoluted process to obtain the information we need as patients.  I'm totally expecting this process to fail.  I wasn't even going to try to use this workaround until I wrote this post.  

It's an unfortunate situation.  And while I wish concepts like open science could work, the incentives just aren't there.  If you make the journals free, the costs get shifted down to the researchers.  When's the last time you saw an affluent doctoral student?

Chris's Ankle Explosion

I started writing this blog post after talking to a couple we met through the blog.  Chris fell 27 feet in a rock climbing accident and destroyed her ankle.  I mean destroyed it.  She's been writing about her recovery on her blog since the accident.  Two years later, her tibia at the articular surface of the joint still has not healed.  Now she's at a crossroad in her recovery.  Does she get a replacement or start the difficult process of considering amputation?

We've been talking back and forth over the last couple of days about our situations.  It's a unique struggle.  The most important thing we can do is stay informed.  That lets us weigh the risks, document the tradeoffs, and ultimately make the right decision that's in line with our goals.

But as Alex shows in his article, scientific paywalls stand in our way as patients.  When facing the decision of a lifetime, such as amputation, without this information, we're less empowered and lay at the mercy of our doctor's opinion — of his unique art and experience.  And I'm not saying that's necessarily a bad thing, you just have to hope his artistic style aligns with your goals.

In spite of these roadblocks, do your best to be informed on the science of your disease (not the Dr. Oz shows).  Recognize that any one specific scientific article does not represent a proven and viable medical option.  Exercise your patient privilege to get second opinions.  But don't, for one second, think you know more than your doctor.

The Sixteen Things, Part Two

Angry Birds and Amputations.  Give me a second, it'll make sense.

It's been a week since the first post in this series.  The idea was, now that I've cut my leg off, come up with things I miss, I love, I hate, and things I cannot wait to do with my new life.  Part two is all about what's awesome with this amputation.  

We're now sitting at three weeks since the operation.  And guys, seriously?  This is still too easy.  And before we dive into the five things I'm loving, I wanted to understand why this amputation seems so easy.  Because I am telling you that an amputation below the knee and the first level of Angry Birds are equally challenging.  Actually, if I recall, it took multiple bird slings before I got to the next level.  

So that means I am wrong!  Angry Birds, level one, is more difficult than an amputation.

Also, as a side note, just throwing this out there, this guy made a video on how to beat level one of Angry Birds.  It's a whole production, too.  It isn't just a five second video of a guy saying, "slingshot the bird."

Why have the last three weeks seemed easy?  It all comes from the last three and half years of surgeries, recoveries, setbacks, and pain.  It was some of the hardest stuff my wife and I have had to endure.  And it culminated in one of the easiest decisions I've ever made in my life.  

Anyone that goes through this experience will be emotionally prepared for an amputation.  Salvage makes no sense when you have pain and no function.  And after a moment of clarity, as I wrote in the first part of this series, I improved my diet and found out what a gym was.  That hard work better prepared me to handle the physical demands today of working out with only one leg.

No wonder it all seems so easy.  We need to make a video on how to beat the first level of an amputation.  We just need to remember there are more challenging levels to come.

But I am totally owning level one.

She loves me, she loves me not.

Five Things I'm Loving

The last three weeks have been some of the happiest moments I've had since my accident, and not all of it is drug induced.  If this recovery has a plateau or ceiling, I'm not seeing it.  I'm back in control of my life.  And I'm loving it.

Perfectly calm, dude.

1. Bye-Bye Stress

The great thing about sitting at home with all of my attention on healing has been a dramatic reduction of stress from my life.  I'm not working.  I'm not sitting in DC traffic with an average commute of 34.5 minutes (2nd highest in the United States behind New York).  I'm not worrying about anything except healing.  And though I have managed to develop some anxiety over it, I'm growing more comfortable with my healing progress every day.  I'm perfectly calm, dude.  And, of course, I have Brooke to thank for much of this.  She took family medical leave to be home with me every day since my surgery.

It's been nice to be without stress.  It's given me space to re-prioritize what's important to me in life.  One day we're all going to wake up and wonder where did the time go?  How'd it go by so fast?  Stress will do that to you.  It diverts your attention.  I'm glad I don't have it.

2. Copious Amounts of Sleeping

I don't have a bed time.  I don't set my alarm.  I sleep like a teenager.  Like it's my job.  I've been working out hard every day since I started physical therapy at home.  Those workouts and the massive trauma to my leg has slapped the sleep button in my brain.  And in spite of the phantom pain, I've put in some serious hours on the pillow.  It's allowed my body to repair what's left of my leg.  It's prepared me for walking possibly two weeks ahead of schedule.  In fact, after I finish writing this blog post, I'm going to sleep.  And it's going to be awesome.

3. Exercise Enthusiasm

I've never looked forward to a visit to the gym.  But recently I've started seeing the gains in my core, legs, and upper body.  I'm doing things I thought would destroy my lower back only a few months ago.  My back has never been stronger.  No more back pain.  I'm leaving the gym in an exhausted sweaty heap — a sign of a good workout.  With my physical therapist I've pushed my body into the best shape it's ever been in.

On one leg.

The enthusiasm I'm developing for working out is absolutely critical to the long term success of a below-knee amputation.  I have to stay lean for the rest of my life.  If I don't, the amputation will work against me.  It will become harder for me to bear my heavier body weight.  An amputation will become no better than a bad ankle.

And as a side benefit, the exercise reduces stress.

4. Thinking About What I Will Do

I cannot stop thinking about what I'm going to do once I've got a leg.  I think about walks with Brooke and Spunky.  I envision late night walks on the National Mall to see the monuments at night.  I wonder what it's like to walk more than a few blocks without dying of ankle pain.  I can't remember what it's like to stand at a bar and not worry about finding a seat ASAP.  I dream about sprinting to catch a metro train just as the bell rings to signal it's leaving.  I'm always thinking about what I can add to my list of things I cannot wait to do.  It's constantly growing.

When I'm not sleeping, I obsessively think about what I'll do with two good legs.

Kickball league, anyone?

5. No More Ankle Pain

I'm not in pain.  My ankle does not hurt.  I don't have an ankle.  I haven't crawled to the bathroom on all fours because my ankle hurt so bad from standing earlier in the day.  I haven't gone to bed icing my ankle.  I haven't gotten up the next day and feared the first few stiff steps of the day.  I couldn't tell you where my canes are.  I'm actually beginning to forget what it felt like.  The ankle pain.  I remember it was bad.  But I haven't felt it in almost a month.

One of the pain management doctors I consulted before my amputation told me I shouldn't get the amputation to treat pain.  Let's ignore the fact he was forgetting I also lacked function.  I'm starting to think he was wrong, at least in my case.  He tried to scare me with discussions of phantom pain.  And to a certain extent, that did scare me.  Phantom pain is definitely real.  And many amputees go on to experience pain from a previous traumatic injury that led to the amputation.

I didn't get the amputation to treat my pain.  I got it to get back function.  To get back my life.  It's just turning out that it may also have helped me with my pain.  And that's freaking awesome.