November 1 Update

Well hello again,



Alot of you know that I had an appointment on Wednesday... been meaning to get the outcome of that up here: This was an appointment at VM with Dr. Kozeric, (expert ERCP guy) and Dr. Schembre (expert photodynamic therapy - PDT guy).



Photodynamic Therapy (PDT) consists of a combination of a photoactive drug (a drug that is activated by light) and a specific light ray that is directed by a fiberoptic probe.

Monday at 10:00 I go in for the infusion of "Photofrin". Cancer cells take up Photofrin more readily than normal cells do, but all tissue takes up Photofrin. For this reason my skin and eyes will be sensitive to direct sunlight until the drug is cleared from the body. 4-6 weeks! Oh well, a little bundled up me will still be getting out every day to go jogging and get fresh air. For once I'm glad it's not summertime!

I know I've already gone over the fact that the mass is not contained within the duct, so it makes it a more difficult target. Well, also, the light does not penetrate through more that a 1 cm thickness and with the mass being not only 4 cm, but positioned all in and around this major junction of my ducts, makes any degree of success in actually treating or shrinking the mass, well... not the intent.

What they ARE hoping to accomplish is based on the idea that yes, the PSC has already left my ducts in a bad way, but that right now, this bilirubin keeps rising (over 30 on Wednesday) mostly because of the mass pressing in all around this junction of the biliary tree causing them to further shut down.

So on Wednesday, (tentatively scheduled for 11:00) we go in (via ERCP again) to administer the light therapy directly to the cancer cells and abnormal tissues, try to administer enough of an assualt on their little hayday to achieve some degree of dilatation of the ducts in the area amongst the mass, creating an amount of release and drainage of bile in that area. Now of course, all of my bile ducts are severely damaged, not just these, so they can't guarantee sufficient drainage will occur. But, hey, it's something!

I always try to keep the info on here informative, but upbeat to some degree... which is how I try to keep my attitude for that matter... but I don't ever want to beat around the bush or sugar coat anything for you guys... that's just not right. So, that being said, I know you guys can put two and two together and see that if the tumor is what's causing the rising jaundice, and the jaundice is the reason we can't treat it... then we've got a situation on our hands. the Dr. had made the comment at one point that if we can't get it to respond, the prognosis is apx 2-3 months. Well, this is still not even a method for treating or shrinking the dang thing, but can potentially open up options for doing so... but in a nut shell, from the conventional medicine standpoint... this is it! Wednesdays procedure is in essence a 'Hail Mary" as Joe and his football mind calls it. Doesn't mean that I'm gonna just hold my breath and consider this thing a do or die, its just that it's degree of success is quite important.

For those of you who were wanting me to ask (such amazing friends you all are :)), the Mayo clinic and the University of Nebraska and the one more that I can't remember, have a very solid protocol that does not permit a patient in my situation to even be considered for transplant until they have undergone intensive chemotherapy for a minimum of 6 months, and the cancer is well under control. Yes, that is even if the patient has their own "live donar". These are the only 3 centers in the nation that do these transplants at all. Apparently about 1% in my situation actually get accepted. I can be that 1%!! Hey, got pregnant with Isaak on birth control!! The other piece of unappreciated news was that this thing is never going to be shrunk enough to allow surgical removal... way to involved with that major portal vein.

So, not to be the big dreary, negative thing.. relaying all this to you guys, but like I said, I don't want to hide stuff either. I am following this system at home that involves alot of juicing in addiction to my 3 meals, (did I say a LOT of juicing?) a very wholesome diet, and supplements to booste by immune system. I continue to excercise every day and my family is helping me to smile and laugh as much as possible!! I even dressed up as Hannah Montanas side kick Lola for the TKD Halloween party:) That produced a few laughs! Well anyway, my nickname is "sunshine" not moon, (right dad) so I will keep my chin up if you guys will continue to love and support and pray for me the way you have been, and we'll BEAT THIS THING!!!

I can do all things through Christ who strengthens me. Philippians 4:13