Hello ye intrepid readers. I feel the need to blog again because there have been some new developments. I have been doing well on the Erubulin (Sponge Bob) and my markers have been going down so by all indices, it looked like it was working. Well, it has been working, just not well enough on my liver. Sunday the 17th I began itching like a dog hosting a flea carnival. Very intense on my palms and the soles of my feet. I am surprised I have any skin left. Then itching all over. Then the tell-tale and dreaded orange pee. So on Monday I went in for some hydration and while it made me feel better, it did not alleviate any symptoms. Gradually I started to getting more and more yellow. Not a good sign. On Thursday the 21st I went in for treatment and my bilirubin was high, a 7! When I tanked last Jan-Feb, I was at 8. So not good, but the thought was the Erubulin would kick my liver back in to shape like it did before. Well, it didn't. I went in Monday the 25th to get a blood test to check my counts (which were lovely by the way) and they didn't like how much more yellow I was which started the day I like to refer to as Cluster F*** Monday. Hurry up and wait was the motto of the day. I felt horrible already with my lack of bile drainage and waiting was interminable. They also said no eating or drinking because we're going to have to something procedurally and you can't have anything in your tummy. So an already nauseous person denied food. That was pleasant.
Cluster F*** Monday, or CFM, started with waiting for my blood test to be processed. You would think "Stat Read" means do this super fast or I'll fire your lame ass, but it doesn't. It means do it minutely faster than you'd run any other blood test but we all get to run around and say "Stat" now and that's fun. Finally got the results of that and my bili was at 12! A new all time record for me! So they decided I probably needed a stent to open my bile duct and we'd confirm that with an ultrasound. This is around noon by now. The ultrasound will be at 2 with a 1:30 check in. So, more waiting.
I get the ultrasound and they had said stay there and the doc will do the procedure right away. Well no, he sends me back to the Cancer Center. Turns out he doesn't want to do the procedure and wants a GI doc involved. Dr Radiologist thinks I need a different procedure that would require admittance to the hospital. So my docs were all working on that. They found a GI, a "super smart" one by their description, and he's not so sure. He wants another test. An MRI. So that get's scheduled for 4:15. The results of that will tell us if I can do the stent or if I have to be admitted for the in-patient procedure. Either way, word on the street has it that this is a serious and semi emergency situation and maybe they'll send me through the ER since it's getting late. Okay fine. You really sure I can't just go home and start this over tomorrow I plead? I've been here since 10am and it's now 4 with no food or drink?? No, this is serious and you must stay so we can fix you. Ok fine. My MRI runs late (no surprise) and I get out of it around 5:20 or so. It's another "Stat Read" and we know what that means. Now where do I go? Back to the Cancer Center. It's locked up tight as a drum and we are all banging on windows. Was I approaching tears? No. Was I approaching major destruction of property? Yes. I could put that nice rock through this window.......ok time to leave. Back to Radiology. There a nice lady helped us and I got the on-call GI doc who said if I didn't have a fever I was ok to go home and everything else would be sorted out the next day. So home we went.
Super Smart GI calls me at home later that evening and he was very nice. We can do the outpatient stent (yay!) but it looks like part of a tumor is blocking the duct (boo!!!). I had the stent put in on Tuesday and a lovely procedure it was. *Note the heavy sarcasm. It was actually pretty miserable and lots of pain after. I am better today thank goodness. But Percoset was my friend there for a few days. I'll have to do it again in 4-6 weeks as I have a plastic stent right now that will deteriorate and I need a metal one put in. The metal one is a special order, they don't keep them in stock. And did I mention Super Smart GI is like 12 years old? I didn't meet him til the day of the procedure and I'm not sure he's shaving yet, but he seems confident and capable.
So today was a chemo day. Dr Onc says the Erubulin is working on my other systems, but not on my liver which is not good news. The liver seems to have worsened so we started a new chemo drug today, Taxol. I will get it weekly every 3 weeks, then a week off and we'll see how I do. No scans for awhile since we just got the MRI and it showed more gunk in my liver. So it sucks that Sponge Bob did not do the trick for my liver. Today my bili is down to 4! Should be below one but we are headed in the right direction and that's a big drop! It helps to have your bile drain, I guess mine was completely plugged, nothing coming out til they put the stent in. As we go through drugs. it gets scarier and scarier when they don't work but I have to just focus on the day, not the long-term picture. Something will work. And I do feel much better today and less yellow :)
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