December 5 - Goin in today... one more final procedure (for a while at least)

Hi everyone,

So, I'm gonna have to make this quick, but I know I've not been on here again for awhile, so a quick update:

I'm going in today- check in at 11:20. CT scan and then I get to get rid of these tubes!!! Yay! What they are actually doing is internalizing them completely this time, last time they were just "capped", but I have still had these 2 tubes coming out of my stomach, so not only do I have to flush and re-dress them multiple times a day, but they certainly don't allow my stomach to just heal up and feel better! But the really cool thing too is that they are going to replace them with permanent flexible metal stents. (yes, that will be me over there with grandpa and his pacemaker trying to get through airport security :) ), which means at least those few little ducts will be kept open and functional. Good deal, right? ...and I like the whole permanent thing, cuz not having another procedure to "look forward to" for having them removed doesn't hurt my feelings one bit! (There are still 2 others in place in there that will have to be removed in a couple of months.)

Oh, real quick, I did have an appointment with the oncologist on Monday: basically, we all (the team of 5 doctors and Joe and I) concur that all of the steps we've made so far have been very good, and it is HUGELY beneficial that the jaundice has been tremendously minimized (that itching was becoming near unbearable) ... and the labs we did on Monday did show the bilirubin level as coming down to 20 (was 30 before the tubes were placed)... so that's great. But in a nutshell, and in the spirit of being completely honest with y'all (like I've always said, no point in sugar-coating anything), Dr. Pinder (oncologist) is still unable to treat my cancer until the bilirubin level comes down to normal or at least very, very close - which is about a 3. The odds of that happening, when it is the mass itself which is most likely the largest contributor to the high bilirubin levels in the first place, are very, very unlikely. We feel so blessed to have very wonderful, caring doctors, but this poor lady was just about in tears as she talked to Joe and I about the options. It's very clear that they really feel that it is just a matter of time for me, and they will do all they can to simply extend that time.

Now, that having all been said, you all know me to not be one to sit back and accept conventional medicine as the only approach, and of course you all know how strongly I believe in a God who helps those who help themselves, and who has been guiding us all along and completely has me in his hands. So, I am going to first of all, be very thankful that there is no chance of chemotherapy messing up our holiday season! I am going to focus on having a wonderful December with my amazing family and friends, and I am going to start on some of the alternative treatments that we have chosen to try. (I can go into that more later, but a safe, natural protocol involving ozonating my water to flood my body with oxygen since cancer cells die in a highly oxygenated environment, and a couple of other things... I promise I'll explain more after I get home, have to leave soon...) But my plans for December include lots healthy foods, healthy fresh air, healthy mind frame... lots of fun, thankfulness, happiness, and focusing on the blessings I have so many of.

So, I better get off of here, need to head down there. I am going to try to insist again on coming home today, so hopefully that will work again and I will be home tonight.... will come back on here again over the week-end and let you know how it went.

Oh!!! One more thing! I am free to be in the sun again!! Photofrin is all out of my body, and I can go outside and get fresh air and sunshine again, which has been nothing short of wonderful! After the appointment on Monday, we just wandered around Pike Place and the waterfront without all of my eskimo attire and there was even some sun that day, and it felt SO good :)

"talk" to you all again soon.

Lots of Love,

Tracey

November 20 - Here I am!

Good thing I never had a burning desire to become a journalist... staying on "top of the story" is apparently not a talent of mine. So sorry to have kept everyone in the dark for this past week.

Looks like I left you guys hangin' on the 11th; so here's what's been keepin' me busy since then:

12th- Procedure with IR (Interventional Radiology) and PDT (Photodynamic Therapy)

So, remember Dr. Schembre, the PDT guy? One week prior, he had administered PDT through tubes placed by Dr. Kozerek via ERCP (the down my throat thing). Well on the 12th, was a similar dual procedure with Dr. Schembre and Dr. Hauptmann of IR. First was the placement of two "PTBD" (percutaneous transhepatic biliary drainage) tubes. For those of you who like to really read up on stuff and know the details, I googled PTBD, and this site had a fairly simple but accurate explanation of this procedure and how fitting it is for me right now: http://www.hksir.org.hk/document/PatInfLeaflet/Eng/pdf/PTBD.pdf

But basically there were two little incisions made in my side and my upper abdomen through which they placed tubes directly into my bile ducts. This in and of itself was fantastic to be able to achieve; like I mentioned in my last post, this hadn't been an option previously, because there had been no ducts dilated enough to safely get in to. But it also created a second opportunity for Schembre's "firing squad"! So this time, rather than go in through the ERCP tubes, he went in through these PTBD tubes and did some more cancer-killing, laser-shooting action - YES!

13th- They said they felt like they were really able to make some progress in there. In fact, they decided to go right in again the very next day, reposition the tubes slightly so that they'd run right through the tumor and Schembre could do more therapy that way... wanted to take advantage of the dose of photofrin that I had gotten the previous week before it gets out of my system. The opportunity for more progress is in place, and I still have active Photofrin in my body, lets take it! I sure do appreciate him making the most of that 1 dose rather than drag our feet and end up having to go another round of Photofrin, because this dodging the sun thing isn't easy- even here in WA! I would have thought I could go out on cloudy overcast days without covering all up, but apparently no, the rays still get through, so Joe has me decked out like a little Eskimo everywhere we go :)

So, now we've had 2 more good shots at the little cancer buggers with the light therapy, and we have these 2 drains aggressively getting rid of some very unwanted bile, and we have a very beat-up, drugged-up girl! Anesthesia, followed by more anesthesia, followed by narcotics cuz ouch! this progress stuff isn't pain-free! So I'm still very much in the hospital, but very much wanting to get home... and as I'm starting to really lean on the docs to get 'em to approve my departure for the next day, they tell me that my blood count is quite low, that with my platelets down I am really becoming very anemic, and they would strongly urge me to allow a blood transfusion :(

So, after thoroughly discussing the matter, we decide to go forward with that at a full-speed ahead rate, cuz I was pretty determined to get home the next day! So we did all of the blood-draw, matching stuff right away, ordered my recommended 2 units, and had the first one going through the night.

14th - Got the second unit of blood, and managed to get out of there by the skin of my teeth!

15-16 - Ah, the week-end... this is when I should have been blogging! But... I was spending aLOT of time either sleeping, flushing tubes, sleeping, redressing incisions, sleeping, or trying to stay awake! Those dang narcotics man, I don't like 'em one bit, happy to be now re-emerging from their loopy effect!

17th - Check in with Dr. Schembre... draw labs...

18th - Checked in VM at 9:30. First I had another CT scan done, then went right into procedure with IR where switched out my tubes for new ones. They can gradually bump you up one size at a time so that you have the maximum drainage. But they also internalized them - yay! From the time of their placement on the 12th, I had had exterior drains; meaning each tube had a bag for collecting all of this disgusting bile. But now they have "capped" them, so the drainage from the tubes just get routed back in with the body's natural disposal methods (in other words, urine), and I just have two very short tubes (a few inches) with capped ends externally. They will leave those in place for a couple of weeks or so, at which point they can remove them completely, replace them with stents, or whatever we decide is best at that point...

So, that's it! I think that brings everyone up to date. Good stuff right?! We don't have proof yet, won't know exact results immediately. For example, the bili levels are hanging out about the same, but see, they've stopped going up, so that's huge! They say the bilirubin really lags behind.. but I can tell the itching is better, and the yellowing :) So I firmly believe we made some progress in the right direction, and though I'm sorry it made me fall off the wagon as far as keeping my blog up-to-date, I'm sure you guys are all glad I had that little flurry of procedures!

Love you and thank you again to all of you for your continued support, and prayers, and messages, and warmth, and love, and..... you guys are the BEST!

Tracey

Noember 10 - more progress

So! Get this! Not only was the procedure utilizing the PDT effective in opening up a couple of ducts, so much so that they were able to place a couple of stents there... good news right? And sure enough my labwork yesterday did show that teensy decline of bilirubin that we were looking for; 4 days post-op, level down from 30 to 28! Well all that is fine and great, but you do the math, I'm gonna be waiting awhile, right...

Well, yesterday I had a visit with Dr. Schembre and he ordered another CT scan. Well, here's what it revealed: Good news and bad news. Okay, so, big fan of getting the bad news out of the way first... So on that note: The cancer seems to have spread to these 2 lymph nodes that sit above and below my bellie button. Okay, yeah, that's just not cool, but WAIT! I firmly believe the good news is better than the bad. On scan were seen several aras of dialation (somewhat dialted ducts) in the left lobe that weren't there before. Now that they know those are there, and they give us something to work with, they are going in tomorrow "percutaneoualy" ... so through my side rather than ERCP (down the throat), directly to the tops of these partially dilated ducts, where they will do one of two things: Either place stents there as well, and now we have doubled our # of functioning ducts, or even more likey, they will be placing a drain with which we can much more aggressevely drain that unwanted bile out of there, and get on with the bigger fish we have to fry! What? Life without itching?? Is is true???

So, that's it, checking in tomorrow at 1:00, procedure at 2:00, and I should have more good news for you by Thursday.

(Hope this all makes sence through my drugged-up self :(

Love you,

Tracey


So tomorrow's even more hopeful!

November 7 - back home!

I'm back home and the procedure went well!

By utilizing the PDT (Photodynamic Therapy), they were able to dilate 2 of the ducts enough to place stents. Stents have to be removed within a month or so, but their purpose is to stretch out the tissues while they are in there, maximizing the odds that those 2 little ducts will stay open! So my thought is: WHOO HOO! Now this stuff can clear out, and in just a few days the jaundice will have decreased...whoah, slow down Tracey... Dr. said it takes more like weeks than days to see how much relief they'll provide... this jaundice thing just isn't reversed very quickly, but that's okay, a step in the right direction is a step in the right direction, so I'll take it! And he does have me coming back on Monday for more labs and another CT scan. That will have been 4 days post-procedure, so the bili levels should tell us something.

In the mean time, I'm fairly "out of order" so to speak :) Super sore! ERCP's have never left me with much pain to speak of, but when you go in there, administer some 3rd degree laser burns to your insides real quick - yikes! Dr. said I'd be quite sore, with malaise, flu-like syptoms for bout a week. But, I like to defy odds, so I'll try to shave a few days off of that, but we'll see...

That's all for now, gotta go lay down! Love you all and will keep you posted...

Tracey

November 4 (yes, that would be Obama Day)

Hey really quick-

Well, first of all thank you SOOOO much to all of you for all the uplifting comments and emails. You guys are amazing! It just gets me when one of the nurses will ask: "How is your support system? Because we have a social worker who's card I could get to you..." and I think how sad that for some they really do need to reach out to someone they don't even know to get the support they need. I feel OVERWHELMINGLY blessed by ALL of you! :)

Now the quick thing- I was just going to say that I had told some of you I'd let you know when the procedure ended up getting put tomorrow. Well, the heads-up is a little late, but it's at 10:00. They will be keeping me at least one night... so we'll see. Once they get you admitted, sometimes it's a bit tricky to get 'em to let you back out! Dont worry Madelyn, if I'm not back to tell the childrens story for church, then I'll have my Dad cover it, ok? I'll sure try to be there myself though. I know it won't take diggin' too deep right now to come up with something profound to relay to those great kids of ours... don't worry, I won't make you all cry :)

Should emerge from recovery bout... say 2-3 give or take. 'Course... I'm still a bit hazey at that point, but I will try to get a post up here tomorrow night to let y'all know how it went.

Well, since I can't eat anything past midnight tonight, I'd better go have a snack! :)

Love you all, thanks again, for EVERYTHING!!!

Tracey

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

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