Thursday, December 8, 2011

Lack of Choices Are Often Unacceptable

A very good Facebook friend, recently posted the following status update:
"Count your blessings. We have a family friend diagnosed with jaw cancer. To prolong her life, they will need to remove her jaw, teeth and lymph glands. She will no longer be able to eat, drink or speak. She's choosing not to remove any of it. She's choosing quality over time. Life is better for all of us more than we think sometimes. Maybe take a moment and say a prayer for her."
...This is such sad news to me, and she will definitely be in my prayers.

Hate to get into any sort of stereotype of gender issue here, but it is only to admit a personal flaw:  Men so often have such a "bad habit" of wanting to "fix" a problem and/or quickly find a solution; versus, just listen to, and sympathize with, those who are simply explaining a situation. And I am one of the worst it seems at interjecting, "creative" thinking, and extensive research or personal insights into the mix.

More recently, but perhaps still not often enough, I have chosen to refrain from as many direct interjections as possible; and instead, continue to use my own personal blog (of often unpublished entries,) as a constructive outlet for my own points, counter points or typical insights.

In relation to my friends, "family friend's" condition; it immediately reminded me of a TV interview I just recently saw with Roger Ebert; whom had been battling with jaw cancer since 2002, until it's eventual removal. Personally, it made me so sad and frustrated to think how far our technology & science must progress for adequate treatment of those of us faced with such afflictions. It could so easily happen to any one of us; yet it seems it often takes the attention of a high-profile celebrity to help garner better research, support and funding.

Despite the fact, high-tech, Prosthetic Jaw Replacement procedures have been attempted since the 1960's (http://goo.gl/ky0UY), most are still considered extremely "experimental". You would think there would be numerous viable options by now. :-( I often think to myself, "we could send a man to the moon in the 1960's, but we can't ...(place frustration here)!" Half a century sure does seems like an awfully long time for medical science to take to advance something so prevalent and crucial to those patients faced with these challenges.

Some of the most hightech methods for prosthesis development and replacement, utilize "Rapid Prototyping"; which is also an advancing product design technology I have followed since it's more significant advancements in the late 80's. (http://goo.gl/LMYee) More specifically, such technology is often referred to as "STL, laser sintering"; and have become very common techniques for general product design and testing. But again, applications for advanced medical techniques involving STL are still very rare procedures (http://goo.gl/08Gkn); and would therefor require very proactive patient research or somewhat unconventional, forward thinking, advanced medical staffs in order to be administered or performed. And Despite many theories and techniques for prosthesis Jaw replacement being as old as 1938, it is still challenging to uncover the leading techniques and research centers offering solutions based on these most progressive techniques.  But I'll discuss more about why individual research of such topics is often a challenge toward the last half of this entry.

To see some of the most progressive applications of new, state-of-the-art, brilliant techniques now being applied to today's medicine you must look towards the field of "Regenerative Medicine" and how it is being applied towards organ replacement, suing "printing" technologies: http://www.ted.com/talks/anthony_atala_printing_a_human_kidney.html

I will certainly be praying for my friend's friend; in addition to her Doctors continued research and referral to the most knowledgeable U.S. specialist and technology available in this crucial area of medical science. There is little doubt, given the choices she has likely been offered thus far, that her current decision is the same most of us would choose as well.  And in so many cases of so much of the research and results which surface pertaining to U.S. based treatments, you will often see footnotes and disclaimers explaining "this is only in the early stages or development, actual testing and treatments are at least 5 years off."  Such disclaimers not only often feel like a restaurants hostess standard, I should have a table in 20 minutes (or on the busy weekend, 45 minutes) but it also cause for searching for what stages countries outside of the U.S. bureaucracy are up to. (http://translate.google.com/)

The biggest challenge in our information age is getting to the right information at the right time!  In fact this has become such an issue that folks are working daily to solve our "information overload" challenges with what has become a whole new ares of computational science and algorithmic theory and study in and of itself. PhD thesis are sighted regularly now through their published papers, eluding to a day when we might be able to actually makes since of all the information we now luxuriously have at out finger tips. http://web.mit.edu/newsoffice/2011/large-data-sets-algorithm-1216.html

There's certainly no shame in the fact that matching a persons need or a Doctors past education with the knowledge and expertise needed for our own, current and personal challenges or circumstances is an on going struggle for all of us.  The hope the Internet and our ever growing connectivity does offer, is that with a little bit of work, connecting these dots can sometimes happen in a very timely manor.  However, I would also argue, for most people, few internet searches prove to be as powerful as those serendipitous referrals and encouragements made perhaps in passing between two individuals in the midst of what might have started out as simple small talk.  Or perhaps even a hybrid of technology and chit chat available to us these days, via an unsuspecting Facebook status update. :-)

=== Skip ahead
I have however experienced my own testimony of how crucial patient research has become; following my own recent medical scare (in March of 2009) and being immediately admitted by my general physician to Baylor hospitals "state-of-the-art" cardiovascular unit in Dallas Texas for multiple blood clots in my right leg following my return from high-altitude snow shoeing and skiing. The only option made available to me following the centers extensive and state-of-the-art visualization of the veins and arteries within my right leg, was to go on blood thinners and lay on my back for 7-9 days as they helped control and perhaps dissolve the culprits.


The irony to this encouragement to me was the fact it was also explained that thee clots likely formed during my stagnant position I maintained on my return flight to Dallas in the days following my high-altitude adventure. So it sure seemed odd that a part of today's current methodology also involved asking a patient to just remain additionally stagnant for up to a weeks time. When I asked if it was more likely to development additional complications if I moved around, the answer was "no".


When I asked my attending physician, almost immediately after being admitted to a private room, if the reason I needed to remain here under supervision was due to the fact I was still in danger of the blood clot in my leg migrating, or perhaps my body forming new ones?  The answer was also "no, and no". She went on to explain, the regiment of Lovanox injections, now scheduled for daily administration, were therapeutically preventing any solid particles from potentially impacting my lungs or heart.

When asked if there was any reason, (given my own ability to administer the required injections,) that I should remain in the hospital?  I was told "no, not really."  Therefor, I said, "well then I wish to be checked out and allowed to go home immediately."


Given the fact I had only moments earlier been placed in a gown and taken up to my own private room, the doctor on duty within that floor of the hospital who was answering my questions, said, "we will see about letting you go in the morning." So after one night stay rather than 7-8, I was released. 

What really became crucial about this decision to leave and not even stay through the weekend, was my ability to return to work the following Monday. It was a brief visit with a co-worker that would forever change my perspective on medical science, research and treatment within our current system of U.S. medicine.


You see my coworker, felt my symptoms and my story sounded very much like what a neighbor of her's son had recently endured.  So much so, that the next day she brought over to my desk the name of a Doctor who practiced no more than 4 miles away form the very hospital I was admitted to days earlier.  However this doctor worked within a completely different medical network.  I had visited Baylor medical, this Doctor was on staff within the U.T. / Southwestern medical center.  A completed unrelated and apparently unconnected system, despite the fact they were only blocks from one another within my home town.


Within days I under went a very new medical procedure to proactively dissolved the blood clots present within my right leg.  You see clots won't go away quickly, if at all.  the body just often learns to adapt and work around the now useless veins.  And even when clots are effectively eliminated through long term use of drugs or by just waiting for the body to heal, they leave behind irreplaceable scar tissue and typically permanently damaged valves, which hinder circulation and cause swelling in extremities.


The point is the sooner the clot is removed the less damage is caused.  So much so is this timing, that the procedure I under went is only available to a patient of the clot is less than 4 weeks old.

=== End of personal testimony

None of this is to say that a cure for any of our ailments is always right around the corner, or is being kept from us unless we proactively ask.  It is however simply offering one testimony of how asking about alternative procedures, and taking a portion of my own care into my own hands, can at times improve your treatment, challenges, and possibly quality of life during your recovery or healing.

I do think that as I bring this entry to a close, I will circle it back around to the effort, opportunity and technology of pro-active, web based (re)searching.  You must keep in mind that current methods of searching for the information, contacts and research your situation might be improved by, is definitely a bit of an art.  And in many cases as you use your own "typical" or currently understood methods of searching for results, you are primarily serving to create a "predictability" which may limit your success.  Many current debates are under way as to the effect the current search giants of our world are having on eliminating or reducing our chances of oh so important serendipitous discovery, referral or passed on piece of valuable info.  You can read about these challenges in articles such as the following:
http://janderson99.hubpages.com/hub/Does-Google-have-the-Right-to-Tell-us-What-we-Want-How-to-get-Unpersonalised 

Or videos such as the TED speech help explain current the Filter Bubble of current "News Feed" and "Search Engine" curating each of our results, based on our own personal typical preferences. http://www.youtube.com/watch?v=mzZzf6PoyC4
My advice when searching for something imperatives to your well being, but perhaps foreign to your won expertise and knowledge base, is to change your typical method of operation.  In other words, switch Search engines!  If you normally use Google, go use Yahoo; if your normally use Bing go use Google.  You probably wont fair as well if you switch from Yahoo to Bing, since Yahoo now uses Bings algorithm to generate its results.  The goal here to avoid being isolated into, as the speech above puts it, "a web of one."

The real power in attempting these searches, is when the human mind connects the dots which no computer algorithm has yet master.  this may come in the obvious effort of translation (http://translate.google.com/) No search engines are positioned yet to search across multiple cultures or languages.  No search result no to deviate from an initial topic while for the moment creating a new search branch based on member of a research lab, or new funding, or a visit you made to the library, or a conversation you had with a coworker, friend or relative which taught you a new related term of science.  Reading an article with such hidden information will send a human down multiple path of research; however, a search engine has no such luxury of creativity and deductive reasoning.

When information can be life changing or perhaps life saving it must not only be taken seriously, but the search for such information must be approached creatively and with a new, as yet undefined, set of resourcefulness and determination.  One mustn't garner or create false hope, but one must also understand the limits of any one persons or one medical offices limited amount of current expertise and information on any one topic.  This is a world which offers new possibilities, the whole of the 7 Billion minds on this planet are now connected in an ever more productive manor. I don't want to instill false hope, I simple want to encourage others to attempt to exploit the planets minds and expertise a little more effectively, before accepting the limitation of one person, one organization or one city, state or countries worth of knowledge.

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