(Yes, this appears elsewhere, but the message about HPV is too damn important, and many of yous peoples wouldn’t hear it unless I posted it here. The struggle with the right over something as trivial as the HPV vaccine give us a glimpse at the hell that they would invite upon us and future generations- slavery to fear and disease.)
On Wednesday, August 16th, I was diagnosed with Squamous Cell Carcinoma on the left anterior 1/3 of my tongue. The cancer progression was T1N0M0 (Tumor less than 2mm, no lymph node involvement, no metastatis), which gave me about an 80% 5 year survival rate (the best category I could hope for with Oral Cancer). Fortunately, I had no risk factors. I never smoked, dipped, drank frequently to excess, had neither HPV or EBV. There was no metastasis to other areas. That afternoon after surgery on my tongue, I entered a new world. I resolved to fight and win. I resolved to need no speech therapy. I would use this as an opportunity, as fuel to my fire. There is important work left to be done, and, damnit, I have hands to help. I have an adorable little daughter who needs to build her first robot before the age of 5.
Within three days, full recovery looked likely, as my speech recovered about 100%. At the end of a week, I had nearly completely healed, I could speak and eat with little difficulty. I was proud of showing off my tongue, and still am. Five percent was removed, and as of a week, there is hardly a scar, just a mild asymmetry. At my first follow-up, the doctor was simply amazed at how fast I recovered. But there was a small problem. The oncologist didn’t like how close my surgeon cut. There would have to be more surgery. Radiation therapy wasn’t out of the question. I had to see a radiologist.
PET and CT scans followed. I had to spend an hour in the tube, utterly still, full of radioactive sugar. The results showed no metastases. The radiologist suggested that my survival could be improved with the removal of the lymph nodes in my neck in a process called selective neck dissection. She recommended that radiation for someone my age (27) would be unacceptable. It would greatly increase my chance of other types of cancer later on, kill my nerves, and would destroy my sense of taste and smell forever. I would have better survival with a surgery called a supraomohyoid neck dissection. Plus, with surgery I’d get a nifty facial scar to show off! The stomach cramping from the radioactive sucrose and hydrocodone withdrawl dampened my spirits somewhat over the next week (don’t ask me how Fatty McDitto could survive the constipation of OxyContin).
However, as of Wednesday the 13th, things looked a bit more grim. My ENT specialist didn’t want to make eye contact. He seemed very worried. I needed to have more of my tongue removed. The margins were definately too close, and there will be more cutting on my tongue. This time, there would be significant risk to my nerves, including my lingual nerve. More cancerous tissue would mean a T2 tumor, and my survival chance decreases. Further, I would need that supraomohyoid neck dissection to remove the top four lymph nodes in my neck. These surgeries were made all the more acutely painful because I ignored my wife’s advice for over a month before I relented to see a doctor about the lesion on my tongue. My Stage Grouping could go from I to II. That’s a 5-year survival rate of 50%, because I’m pig-headed.
Invasive cancers like SCC have a high recurrance, and recovery from recurrance is rare. In my tongue resection, I may go mute. I may have high morbidity from future radiation treatment if necessary. But I planned to keep fighting like I had been. I planned to retain 100% use of my tongue, and live to a ripe old age of “beyond 30.”
On Tuesday, I went in for my surgery. After an hour of preparation, I was strapped to the operating table, freezing, and naked but for the paper gown. Sure, the nurses were nice, but I was an hour or two away from some of the most important news of my life. Would I be able to talk? Would I retain my sense of taste? Would my nodes be enlarged, and indicitave of metastasis? Would there be more cancer cells in my tongue resection?
Today, I’m at home, doped up on Vicodin, with a nice 9-inch scar on my neck, and minus 4 lymph nodes and a few more centimeters of my tongue. Today, as the scars from the flesh-hooks heal, there is only good news. The oncologist saw nothing in my tongue resection or lymph nodes to cause concern. He will check more thourougly over the next week, taking the frozen sections a thing shave at a time and examining them for any sign of cancerous cells. And beyond a bit of stiffness, I seem to have retained my full speech capability, again.
But now I know where I plan to take this fight after defeating my cancer- to anyone who slowed down the adoption of the HPV vaccine. Why? Here are some facts for you:
The American Cancer Society estimates about 30,990 new cases (20,180 in men and 10,810 in women) of oral cavity and oropharyngeal cancer will be diagnosed in the United States in 2006. An estimated 7,430 people (5,050 men and 2,380 women) will die of these cancers in 2006. (http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_are_the_key_statistics_for_oral_cavity_and
_oropharyngeal_cancer_60.asp)
Oral sex can lead to oral tumours. That is the conclusion of researchers who have proved what has long been suspected, that the human papilloma virus can cause oral cancers. (http://www.newscientist.com/article.ns?id=dn4712)
It will cause over 8,000 deaths, killing roughly 1 person per hour, 24 hours per day. Of those 30,000 newly diagnosed individuals, only half will be alive in 5 years. This is a number which has not significantly improved in decades. The death rate for oral cancer is higher than that of cervical cancer, Hodgkins disease, cancer of the brain, liver, testes, kidney, or skin cancer (malignant melanoma). (http://www.oralcancerfoundation.org/facts/index.htm)
It is also possible that those in this younger age group [under 40] have a causal link which is viral based, since the amount of time they have been exposed to other known causative agents such as tobacco is short. The human papilloma virus, particularly versions 16 and 18, has now been shown to be sexually transmitted between partners, and is implicated in the increasing incidence of young non-smoking oral cancer patients. This is the same virus that is the causative agent in more than 90% of all cervical cancers. (http://www.oralcancerfoundation.org/facts/index.htm)
From what we know, 30% of oral cancers show evidence of HPV or EBV (Epstein-Barr Virus). However, most people successfully fight off HPV infections, leaving little evidence of prior infection. Before recently, there has been no great effort to track antigens in oral cancer patients. There are at least two studies underway to determine if certain HPV strains contain the oncogenes for oral cancer, just like cervical cancer.
Consider this for a moment. Oral cancer affects men twice as often as women. At any given time, about 30% of us have some form of HPV. If it turns out that HPV does contain the oncogenes for oral cancer, and we can link it as the primary mutagen for malignant transformation, what does that say about the various “pro-family” campaigns in favor of torturing women? Guess what guys, it’s not just women, and the disease isn’t solely sexually-transmitted (unless you can count kissing as a “sexual act”). In fact, the strains thought to contribute to oral cancer are not the same as for cervical cancer, and the vaccine would not protect against them.
Consider this also. I have lived most of my life in North Carolina, tobacco capital of the universe. Until the age of about 18, most restaurants didn’t even have a non-smoking section. All of my friends smoke. My father smoked (until the day he drove me home from the hospital and I yanked the cigarette from his mouth and began punching him). My mother used to smoke. My wife smoked until she met me. At one point in time, I was probably the only person I knew who didn’t smoke. I was 14 at that point in time. Believe it or not, liberals are still blamed for destroying the tobacco industry. Liberals are viewed as meddling with man’s God-given right to kill oneself slowly and painfully. Funny. Tobacco can and does destroy the lives of those who do not make the choice to use it.
Cancers like this, according to my oncologist, USUALLY take 20-40 years from a first mutation to develop into a tumor like I had. I’m 27. More than likely whatever mutation started in my childhood. It could have started as late as a couple of years ago, which to many of you, is still childhood. In my case, we will most likely never know why I presented an SSC tumor.
But no matter the cause, I know know intimately the pain and fear any cancer can cause. My newly-issued liberal anger is burning hot enough to push global warming ahead 3 years from the stupidity of people like the Family Research Council, Tom Coburn, and numberous other assorted Luddite asshats who pushed to have the vaccine rejected by the FDA. The time wasted in vaccinating children against HPV has cost … mubmle*math*mumble*May 2005 successful trials*9,710 cases over the last year*mumble*napkin-scribble*74% 5-year*70% from types 16 & 18*where’sthataddingmachine …1,768 women their lives in a very, very brutal fashion. How many man-hours have we wasted in murdering these women? This number doesn’t count the women who will be denied the vaccine from parents unwilling to administer the vaccine (best efficacy in girls 9-11, and polls show only 80% of parents willing to give vaccine) because of “family”-based advice.
As of August 16th, I now number my days in how long I’ve survived. As of August 16th, I’ve been drafted into a army. My war will be waged against those would deny life, liberty, and peace of mind for the sake of power and control. I may have a year. I may have a decade. I may have a century. However long I have, I will fight loudly, visciously, righteously against those who torture, whether it be from denying women a cure for cancer, scaring children with sexuality, or drowning brown people in secret prisons.
So, I guess the Republicans were right, we are at war, and you are either with them or against them. But the enemy of my enemy is not my friend. I reject religious extremism and barbarism in all it’s forms, muslim, christian, or corporatist.
So, I’m asking you to help me. Let me know who I can corner to get my message out. Give me ideas on how I can let people know. Should I go back to posting diaries on here? Should I see if I can worm my way onto the local news? Are there any groups I should be aware of that would accept my help, and not just a 50-dollar tax-deductable donation, thank you for pledging?
