Archive for February, 2013

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Hey all!

Patience finally won out!  During the last four months, the gap between chemo (the bad guy) and prosthetic (the good guy) slowly widened until yesterday when the good guy finally won! We brought home our new pride and joy yesterday with my new leg!  It’s heavier than I anticipated.  It’s also going to require more work from me than I anticipated.  The first steps yesterday were difficult but manageable.  Learning to walk again is going to require more time than I believed and also some serious thought about my socket, stance and gait, words that would not have entered my vernacular prior to the cancer detour.  I’ve been told that, as an amputee, the first year to 18 months is the worst with the prosthetic, with a love-hate relationship developing over time.  I’ve already experienced a small portion of that with the first few steps. Maybe I held too high expectations, but the leg does NOT fit like a glove and strangely, I was not walking normally in 20 minutes.  Huh?  After about 15 minutes of walking back and forth, aided by parallel bars, a pressure (and pain!) point had developed and intensified on my residual limb and I was ready to, wait for it…take it off!?  Really?  Luckily, our prosthetist informed us that that was normal; that it would take time for Short Round to adjust to his new home.  I knew this in my mind, but of course was hoping for an unusually optimistic outcome in my subconscious.  Fortunately, the discomfort is nowhere near the level of phantom pains; that memory is enough to get me through future somewhat painful therapy sessions.

Regardless of the minimal frustrations, owning the actual, physical device represents so much more than just another “step” in this cancer journey.  Most of you realize how long we’ve been waiting to take possession of it and the many obstacles that have continually pushed this day further down our calendar. Most of these were unknown and unpredictable: hospital stays for small, silly symptoms that slowly crept into our existence, waiting on the actual wound on Short Round to heal (a process delayed by the diminishing effects of chemo on my immune system), and of course the recent insurance issues.  Bringing the leg home was more than just a part of the journey; it was a major milestone, a piece of technology that stands for undaunted optimism against the backdrop of the cancer horrors we’ve so far endured.  I realize it’s not an idol (is it too much that I have it stored in a three-lock, retinal scan safe that releases a boulder on anyone but me who opens it?)  It’s simply a tool for my family and me to realize a bit more normality.  But every time I look at it, now taking up well-deserved space in our home, I see a future – one that is more hopeful than the previous one; one that grants me a long awaited sense of control.  The excuses for not walking are no longer outside of my sphere of influence.  Now it’s up to me and my capabilities.  I will make the daily decisions of how much to practice and learn walking again based on level of discomfort, fatigue and just whether I want to or not!  The robotic leg sitting next to me right now is just that, physically next to me, touchable, and no longer abstract.
I’ve previously mentioned the level of technology embedded in the leg which is is astounding (I mean really? It’s got Bluetooth to remotely program it!)  I admire and respect the incredible amount of research and development that Ottobock undertook to produce it.  I also cannot ever appreciate enough part of what has driven the prosthetic industry, especially in the last decade – the hundreds (maybe thousands?) of military amputees from Iraq and Afghanistan looking for a better way to own a new limb.  Ottobock and similar companies had decided that the current level of prosthetic technology was not enough and pushed the envelope to develop products such as mine which help amputees move a little quicker, sit-down a little easier and participate in what were previously more difficult activities.  Because of the sacrifices of these veterans and the dedication of the prosthetic companies, folks like me, new to the amputee world, will not have to endure many of the problems associated with older technology.  This is my humble thanks to all of those before me.
Please enjoy the pics and videos of the first few steps.  Jenn unselfishly had to work in a small room with limited phone memory to get them!  The other guy is my prosthetist, Eric.  Yesterday had quite an impact on us and today I can look at my leg, and make a decision on whether to use it.  I think I will.
Up and about!Which is the real one?
Getting Adjusted  Getting Adjusted

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Hey Everyone
I do apologize for the delay in posting.  I have been waiting for some good news on the prosthetic front and kept putting off writing…etc., (I know, excuses are like {insert favorite euphemism here}, everybody has one.  We did get some good news though. First though, I’d like to again thank everyone for the continued reading of and posting on the blog. As always, it’s very encouraging knowing folks are involved.
As I’ve written previously, visits to the prosthetist have been a source of excitement and progress.  Unfortunately, they have also been just a slight source of anxiety because of some delays with insurance related issues and whether they would approve the more technologically advanced prosthetic.  So, we were thrilled when we went to the our prosthetic appointment yesterday and found out that we received full approval and we have no more hold ups!  The leg is almost ready.  I have an appointment on the 26th for the final fitting (have to wait until after chemo next week) and will be able to bring it home (sounds like a newborn.)  So prepare more leg jokes if you have them! I’m very excited.  It’s really the first concrete date we’ve had with the prosthetic since we started all this.  I’m ready to learn how to walk (fall) again!
I’m going to vent a little now.  We were introduced to a new side effect during this last round of chemo – mouth sores.  I had read about them, but like most life events, nothing really can compare to the  actual experience.  And like MRIs, I wish these on no one!  If you have ever had a mouth ulcer, just imagine five or six at one time.  And, because of the low blood count, they don’t quickly heal and stick around for a few days.  Mine rapidly became prominent throughout an afternoon and were quite painful.  My tongue and cheeks ganged up on my teeth to became mortal enemies. Anytime one of the sores was within tooth vicinity, pain was the result.  I quickly realized just how much unconscious movement a mouth is responsible for.  In order to experience the least amount of pain, I had to keep my mouth about halfway open and forming words or phrases was out of the question!  Without getting too graphic, I never realized how much the tongue and cheek are involved with 1) basic mouth maintenance (subconsciously keeping the mouth clean, which means tooth and sore consistently get cozy (ouch!), and 2) of course, eating, which…well was just not happening.  I had a milkshake for breakfast and mentally steeled myself for pretty much the same for the next few days.  Jenn picked up some Ensure for me and I begrudgingly watched “Diners, Drive-Ins and Dives”, mouth halfway open.  Jenn wanted to call the doctor to see if there was anything they could do to help, but I was against it.  My mind believed it was just something cancer patients had to endure.  Luckily, Jenn insisted.  So I reluctantly agreed and sent my oncologist an email, just knowing that I was going to be laughing stock of her office that day.  I was expecting the answer “just lay around with your mouth half open until your blood count increases and they’ll heal.”  I was surprised when we received a prescription for something called “Magic Mouthwash,” a concoction (apparently there is more than one mixture) of Benadryl, Maalox, and Lidocaine.  Jenn picked it up for me, and I used it that night before dinner, not believing in the magic.  Needless to say, and as usual, I was wrong.  It worked like a charm!  It first graciously numbed my entire mouth, tongue and lips.  I initially thought that it was going to affect my taste.  But after waiting 15-20 minutes, the dosage wore enough to allow the taste to come through.  Eating slowly, not feeling the sores, really was magic.  I believe.  I truly believe.  It wasn’t DDD, but that night’s dinner came close.
And of course, Jenn’s insistence that we at least ask the question to my doctor led to the solution.  Throughout this experience, I have been reluctant to communicate my side effects to the doctor.  I’m sure there is a psychological explanation, but I have this belief that enduring the side effects is a part of the experience and contacting the doctor about small symptoms is a burden.  I am generally a positive person the downside being that I tend to mentally downplay issues and minimize symptoms until, in my mind, they are not caused by my cancer and I don’t need to contact anyone about them.  I am extremely lucky that I am married to Jenn. Her persistence has overcome my stubbornness to act on symptoms more often than not and she will not allow any of them to go unaddressed.  She knows me too well; well enough to know that I will procrastinate (probably because of denial on some level; that and possibility of ending up back in the hospital) if I need to email the doctor for a new symptom.  Jenn will quickly take over and get a proper email written, and usually easily solve the problem.  I’m happy to say that this is one of the lessons I’m taking from this – to become more aware (more mindful!) of my own symptoms and to not ignore them or diminish the severity of them.  With cancer, or, in general just well being, it is too important.  A little embarrassment with the doctor is well worth the possible early detection of something serious.
Chemo week coming up this week – Tuesday through Thursday then scans 3 weeks later.  Thanks again everyone for reading!  Talk to you soon!

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