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We are all the architects of our own situation many times in life. If it was going to be an easy, cookie cutter trip through it all, we would never learn anything. Life is a journey... Not a guided tour. I can't count the number of bad decisions that I have made in my life, both moral and lifestyle. Now an old fart, I am starting to finally get some of it, but likely most the big picture will likely elude me until the end. You start out as a raw block of stone, and life chips away at you, finally revealing who you are. Were it not for those blows to chip away bits an pieces, what is inside would never be revealed. But while I am a big proponent of learning from mistakes... some never seem to... I am not a big proponent of beating yourself up for choices that you made in the past. It is an exercise in futility, assuming that you learned something and aren't going to do the same thing again. All that is left to us is to learn and move forward. Anything else, unless it is the sharing of that knowledge with others so they don't step in the same holes, is a waste of thought and effort.

There will always be people that think that we got into this because of our own bad decision making. Some of us did to deny that negates the ability to learn from it. But how does that change things today now that the damage is done? In no way that is productive.

Good judgement comes from experience, you are not born with it. Experience comes from bad judgement. It is just part of the path. As to David's comment about his ability to grasp things, I can only say that our knowledge, his,mine, and everyone else's, is evolving. We re all trying to get our minds around new ideas all the time if we really care about our journey, let alone helping others through theirs. David cares or he wouldn't be here. But lack of knowledge of something hardly means that you came from the shallow end of the gene pool. There is a big difference between ignorance and stupidity. I can't count how ignorant I feel everything I am at a cancer conference with the really bright. But I try to absorb as much as possible. We all need to be better tomorrow than we are today. What others think of us and our situation maters not, and those that don't get it don't merit the argument.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Ray as with any etiology, it takes time for things to reach a critical mass where it actually becomes epidemic, a phrase Gillison often uses when talking about HPV. It is a matter of social behaviors combining with a transferable agent (a virus in this case) and mathematical issues that allow a single person to take something and give it to another, who gives it to three more, who give it to 9 more, who give it to 20 more, who give it to a hundred more, until it because so common place that someone pays attention. Some have speculated that the free love era of the 60-70's accelerated something that would have happened anyway over a longer period of time, and we are just born into a slice of that time line. Be thankful you were not born into a time of black plague.... life could always be worse it seems.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I find it interesting how many people will ask "What do they say caused it?", as if our treatment teams were focused on the causation, not fixing the damage and controlling the spread.

The anti-smoking/drinking folks want to hear that as a cause, the Vegans (that would be the vegetabletarianism people, not the aliens from afar) want to hear it was red meat, the Chastity people want to hear it was HPV, and the land-line wired telephone people want to hear it was cell phones, the Goths want to hear it was sunlight, and so on.

S**t happens, be it genetic codes, oral irritations or something unidentified as of yet -- Like AIDS, there may have been some subtle shift in HPV, coupled with the wrong genetic coding, that is causing the spread.

Better minds than mine are working to find answers as to cause, but that may or may not be useful -- How are we going to fix genetic code defects? Will Microsoft be involved in the update process?

Remember, it wasn't all that long ago that we all believed that stomach ulcers were caused by stress and diet, not a virus!



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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I couldn't agree more. That will be a whole different kind of "code warrior" than those at Microsoft that figures this out.... Couldn't agree with you more about all the different perspectives. The only one that matters is yours. By the by, it was a bacteria not a virus in stomach ulcers -Helicobacter pylori, but the comment is still valid.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I stand corrected -- Bacteria it is!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Sep 2006
Posts: 8,311
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People are not limited to pointing the finger at tobacco users. When the article http://www.sptimes.com/2007/04/17/Floridian/Clues_to_the_cancer.shtml
appeared in the St Petersburg Times about my HPV connection some of the reader's responses were negative towards what they thought were my personal habits including one that said I deserved what I got.

Pete,

I was told 2 years ago that HPV can lay dormant for decades before causing trouble. That thinking may have changed in that time but I haven't heard if it did.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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People's cruelty to others seems to know no bounds. When these things happen I used to lash out, these days I hope for poetic justice instead, probably and equally maladjusted response to it all.

An individual's ability to think and behave like this often stems from two previous mental set ups. One involves a sense of moral or even physical superiority to the objective person. This is seen in racism and and other situations where people find their lot in life superior, I am white you are black (you can substitute tons of variables here that have allowed genocides to occurs for centuries including the ethnic cleansing of "the Indian heathens" from North America), I am a Christian you are not, which has been at the center of untold conflicts like the Crusades. In the worst cases it requires the antagonist to dehumanize others to allow extreme abhorrent behavior, the killing fields of Cambodia, the holocaust.... you are less than human so what I do matters not. While these are all extreme examples, they are all based in believing that someone else is less. Some people cannot live with others who look, think, or behave differently then themselves. Ironically the person with this belief is the one who is less.

It is still believed that there is a dormancy period for HPV like with many other viruses such as HSV1 and 2. But that has not been scientifically proven. This will require finding it in its non active state somewhere like the HSV residing on the ganglion of our nerves when it is not active.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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This was also how much of the straight world, including the President, responded to the gay community in the early days of the AIDS epidemic.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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