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