October 29th Update

Hi there...

So, haven't put an update on here for a bit... sorry Jeri :) Most of you would agree, we can't all be as on-the-ball as Jeri! She's just AMAZING!

Friday's fallen apart plan...

Some of you had heard that I might be going through a treatment on Friday called "Plasmapheresis"... well that ended up being a no-go. In theory it would have served to clean the bilirubin from my blood giving me temporary relief. (cuz, yeah, the itching just about makes me loose my mind at times...) Of course not a fix anyway, since the underlying problem is very much still present. But apparently I would have had to undergo a minor surgerical procedure to place the catheter needed for admininstering the treatment, and since my liver is under stress, my platelets are getting "beat up", therefore I am not clotting like a normal person. (No Tony, that doesn't mean there's now sure proof that your sister is not a normal person :)) so it was going to be too dangerous due to risk of bleeding. I do appreciate them thinking that through! I'd rather be forced to be tough than to do something rash. So they switched my medications up a bit, and the 4 specialists that had gotten their heads together on the decision concurred that the best bet would be for me to just come in so that they could better tend to me there intravenously; yeah, a.k.a. drug you up! An invitation I am not going to jump at! So, I've just been toughing it out... had a nice week-end regardless. Mom and Dad are back from their trip, so they spent the day w/ us which was nice since Joe had an all day event in Portland.

Vitamin D!

I am SO extremely thankful for the beautiful sunshine we've been having :) ..and yes, I do try to get out and soak up as much as I can of the lovely vitamin D every chance I get. Joe has taken me down to the beach a few times and I jog or walk out in it every day. oh yeah, and keep in mind there's always a story behind the story... so if you ever come along unexpectably to find a half-naked rather yellow girl layin on a bench in the fall.... just cut her some slack, okay? She likely has a legitamate reason...(ok, so my scenario was pants and sleeves rolled up, midriff exposed... not too terribly indecent!)

New Supplement

So the latest addition to the regime, some of you have not only heard, but helped tremendously to support, is this product called "Ambrotose". Out of all of the suggestions and success stories from so many caring folks, this is one I have been the most impressed with. Not to mention it is something I knew years ago that I should be on. Some of you are concerned, and I don't blame you, so I am going to try again my best to explain in a simplified nut-shell what the jest of it is:

Here's my feeble attempt at explanation....

Of the 200 monosaccharides that occur naturally in plants, fewer than ten are predominintly used by the body for healthy function. These sugar molecules constitute an "alphabet" of "letters" that can be combined in uncountable ways to form "words" the body uses to communicate information required for healthy function. Glycoproteins are molecules that are combinations of sugar and protein; glycolipids are combinations of sugar and fat. The general term for these combinations beomolecules is glycoconjugates. Glycoconjugates on cell surfaces and in the blood are responsible for cellular recognition processes that enable the body to perform the many complicted functions required for health. Glycoconjugates on the surface of one cell bind to receptors on another cell, which allows the cells to communicate with one another. This is called cell-to-cell communication. Glyconutrients also constitue important parts of glycoprotein molecules in the blood (rather than attached to cells). So amongst other benefits, particularly in my case this product will likely:

• Enhance immune system function.


• Encourage proper communication amongst cells as in self vs. non-self. (Since my PSC is an autoimmune disorder, this straightening out of what to attack is a very good thing)


• Inhibit growth and/or tumor cell metastasis in certain types of cancer.


• Inhibition of cancer growth by glyconutritional sugars, such as mannonse, appears to be partially related to immune system activation of natural killer cells, a type of white blood cell that destroys cancer cells.


• Glyconutritional sugars appear to inhibit tumor cell metastasis by preventing the attachment of tumor cells to normal cells by competing for glyconutritional sugar binding sites on the cell surfaces.

Sorry Leslie and others who understand it better if I completely botched that definition!

I've had numerous first-hand stories shared w/ me of people who have faught cancer using this product. Two things not to worry about- One- Completely safe! NO amount of this stuff would kill any lab rats! Therefore it can't be given a FDA lethal-whatever-it's-called rating and called a "drug", instead it's a "nutritional supplement". TWO- Don't worry, my plan is not to just throw all my eggs in this basket, and hope like heck it works. Some of the great stories come from people who have used only these alternative treatments alone, but more frequently, I believe, are those who used this product to boost their immunity to a level that enabled them to tolerate the chemo and radiation so much better and ultimately emerge victorious! Now THAT's the plan! The victorious part :)

On that note, I'm off now to VM to have the apt w/ 2 experts of the Photodynamic Therapy... let's see what they've got! I'll let y'all know.......

LOVE YOU,

Tracey

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