Up to speed...

Hi everybody! Okay, so first of all, I have to thank all of you so very much for your support and prayers and love. I can't even tell you how powerful and uplifting it is. I know you are all concerned, would like to be kept up to speed, and it can be hard to reach me... so this way you'll be able to at least stay updated, and I'll do my best to stay in touch.

To start at the "beginning" of all this; about 4 years ago, I was diagnosed w/ a rare liver disease - Primary Sclerosing Cholangitis, or PSC, which is connected to the ulcerative colitis that I had my colon removed for in 2002. A whopping 5% of UC patients develop PSC - lucky me! PSC causes the progressive inflammation, scarring and narrowing of the bile ducts in the liver. Generally speaking, someone w/ PSC will progressively need more and more ERCP's (a endoscopic procedure used to dialate the strictures via baloon cathetar or stinting) until eventually needing a liver transplant. I underwent ERCP's in both 2004 and 2006.

So, one month ago my family noticed the whites of my eyes looking a bit yellow, which I knew to be indicative of PSC rearing it's ugly head. Blocked ducts means the bile backs up and bilirubin is returned into the blood stream resulting in jaundice. Of course in babies, jaundice is generally just their little liver not quite ready to hit the ground running and a bit of light therapy... they're good to go! But when there is such an extreme cause of the jaundice as in PSC, not so easy :( I was told that you're considered "juandice" if your bili level is above a 3, at that time, mine was a 7. UW medical center did an ERCP on the 1st of Oct, found the bile ducts to be so severely narrowed that they were unable to accomplish much. The jaundice and pain were worsening, bili now at 14, so a friend referred us to world-renowned Dr. Kozerik at Virginia Mason who is supposed to be the best ERCP guy in the nation. I had high hopes that he could get something done in there... he did ERCP on the 8th w/ much the same result. His 0.025 inch wire was not quite tiny enough to ease up into my ducts! Good grief right? So he placed a stint in the common bile duct (bigger one below the biliary tree), in hopes that would help.

So I was told he was going to hook me up with his best hepatologist who would be coming to talk to me the next day. I knew the procedure hadn't gone well, so was preparing myself to hear that my disease had progressed much more rapidly than typical, and that I am already in need of trasplant. Well.... if only that had been the case! To back up a wee bit, the night before the ERCP, my admitting doc had ordered a CT scan which unbeknowns to me at the time, had revealed "something concerning", this mass on my liver. So when the hepatologist, Dr. Kowdly came to my room the next day, the news was that yes, I am in great need of a liver transplant, but that they had discovered this mass; if biopsy came back as just some scar tissue, or area of cirrhosis, or something we would proceed w/ trasplant asap. However... biopsy revealed it to be not only cancerous, but cholangiocarcinoma, meaning it is specifically a cancer of the bile ducts. Unfortunately, this is caused by the PSC, therefore it will be very difficult to get on a transplant list at all, since my disease presents a significant chance for reccurence in the new liver. Only 2 centers in the nation would even consider touching such a case; the Mayo Clinic and "Nebraska".

So, in a nutshell, here's where we're at: The tumor is not contained within the ducts as "nice" little cholangiocarcinomas should be, but rather grew out into my liver. Surgical removal is not an option, because it is encompassing my portal vein. They can't treat me with traditional chemo and radiation since my bili levels are so high (was 26 on the 16th), way too toxic. Had 3rd ERCP last week to remove the stint that had been placed, (wondered if it was further complicating) but didn't help either. Potentially it is the actual tumor that is our biggest contributor to the rising bili levels, so what we are going to try first is something called "Photodynamic Therapy" (PDT) in which they treat the tumor directly via fiberoptic cable. Not originally considered a viable option, since this little bugger didn't stay inside the duct where he could have been a nicely contained target... but hey! This way they're gonna have to try it, and my plan is that it will work! :)

Looking a little farther out, the goal is to shrink this thing enough to be clear of the portal vein and then surgically remove what's left, or shrink it enough to make a better case for the Mayo clinic to accept me for transplant. Dr. Kowdly has not given up on that possibility. Oh yeah, just one more kicker - I was told by my oncologist, Dr. Pinder, that this type of tumor can never be completely done away with by treatment. So I'm pretty determined to remove what's left one way or another!

So, there you have it there you be! I am going in for more bloodwork tomorrow and based on the bili levels, the doc will potentially administer a type of dialysis to clean my blood giving me at least temporary releaf from the jaundice. Maybe that way I won't have to scratch off ALL my skin! EXTREMELY itchy, oh yeah, and yellow :) Not a fix, since the underlying problem is still there, but will likely help until we can move forward w/ the other treatment. Apt w/ Kozeric and the PDT specialist is on the 29th...

In the mean time, I am doing what I can on my end to try to kick the jaundice. Dr. has me taking tons of this stuff called Cholestyromine which is supposed to bind w/ the bilirubin and get it out. Some things that are typically good for the liver are not for me right now, such as tumeric and dandilion root, because their benefit for a normal liver is to stimulate bile production - yeah, we don't want that right now! But I do take Milk Thistle and eat lots of beets, those two are supposed to provide liver support I can use right now. And there are some things that may specifically help jaundice - tomatoes, coconut water, lemon in my water... excercise is supposed to be helpful, and does make me feel better. Doc encouraged me to keep that up anyway - says the fact that I've been excercising up to this point is the only reason he can figure for me not being stuck in bed. So I either jog 2 miles or do Tae Kwon Do class every day, and eat lots of fresh fruits and veggies, whole grains... as much good wholesome food as I can.

I think that just about brings you up to speed, and now I'll just make a new post whenever there's progress or news. Again, love you all tremendously, thank you for everything, it means SO much; makes me happy, which is good, cuz -

"A happy heart is good medicine and a cheerful mind works healing" :) Proverbs 17:22

Bye for now,

Tracey