Hello I'm Thomas Mahinulani Novikoff
I was born on Friday March 13th 1981.
On May 16th 2009 I was diagnosed with a Extrahepatic Biliary Stricture. That's about the best explanation I can give you up to this point. Here's a picture of it.
The Y-shaped black part in the upper middle is my extremely dilated bile duct.
On May 10th I noticed I was turning yellow, there were other symptoms that just seemed to a function of my diet and dehydration. But the turning yellow thing was the deal breaker, and on the 15th I was lugging my butt into a hospital emergency room to get someone to figure this out. The next day after a urine test, 5 blood tests, an ultrasound, and a CT scan I was having a tube shoved down my throat getting my plumbing unclogged with an Endoscopic Retrograde Cholangiopancreatography (ERCP). The end result was the picture below.
The tube is the only thing keeping me alive. Otherwise the bile backs up (and bile is toxic stuff), and systematically poisons/destroys the liver. Over time cirrhosis ensues, the liver begins to fail, and that's all she wrote... Thank goodness for modern medicine. Since then I've had the tube replaced 3 times due to occlusion. This results in cholangitis, which for me causes a splitting headache, a fever, chills, and more bile back up.
I've basically been able to resume a normal life...basically. I've been on antibiotics for over 4 months to prevent the cholangitis (the liver is your waste management center so it deposits all the bacteria to get it out, and if it can't go out the conventional way, it's stuck). I take a bile acid called Ursodiol with every meal to help with digestion, liver function, and stent clogging prevention (doesn't do the latter all that well). Otherwise I can still do this...
On November 5th, 2009 I had a pancreaticoduodenectomy for what turned out to be Stage III Cholangiocarcinoma, I resumed riding the trainer less than 2 weeks later, because I hate walking. Though I no longer have a fully functioning normal digestive system I went back to work less than a month after the surgery, and resumed riding about the same time.
2010 has been 6 months of Chemotherapy (Gemcitibine-Cisplatin cocktail 2 times every three weeks) then Radiation all of August at Stanford to save me the driving hassle. Now I'm done with that crap. I did it all by myself (except the actual IV and IMRT manipulation), driving to all but maybe 3 out of 40 treatments (my Aunty Charlotte wanted to go a few times). I rode 100-200 miles a week, and raced 15 times this year during my treatments...though I plain sucked.... just wanted to pretend everything was status quo. I also never missed a single day of work due to the treatments. Fatigue? That's an excuse. Nausea? Sure...but I just sucked it up. Anemia? Annoying but manageable...except when trying to race Professional Cyclists. I never made excuses, never asked for handouts, never wanted to be treated differently, and never let it get to me.
Thankfully...to be continued