Gosh, I can't believe I haven't been online here since October 17! So sorry - there is much going on in my world. My oncologist and surgeon here felt I needed the PTC procedure immediately, as I was extremely jaundiced, itchy and full of, well, bile that wasn't going where it needed to go. I did that procedure here at Baylor in Dallas 10/14. It went well. I spent 2 nights instead of one in the hospital because I had nausea (so we thought). I was sent home on Wednesday, 10/16 and that's about where I stopped posting. I couldn't keep anything down and by Friday, I was back at Baylor in acute shape with severe dehydration. We spent the weekend getting me hydrated and then lost a day or so when the young internist assigned to me just kept treating me like I had nausea and not looking elsewhere. Finally, my husband said, well, what does Dr. Goldstein say (my surgeon - although he didn't actually do the PTC)? Long pause.... who is Dr. Goldstein? Um, head of Liver Transplant and big dog at Baylor. Well, once Goldstein got involved, things happened and they figured out that I had two blockages preventing anything from going in or coming out my digestsive tract. One was a plump lymph node (although no sign of cancer cells in it) and the other was where the tumor was wrapping itself around my duodenum (?SP?) and basically choking it off. Before I knew that, I was worried the PTC was going to kill me, I felt so bad (it actually turned out to have gone so well, they took the external drains out way early).
So, I was back in Baylor for 9 days and I had a procedure called a gastrojejunostomy (gastro J), which is, in essence, part of what they do in a gastric bypass surgery. They rerouted and attached my stomach to avoid the blockages, which couldn't be removed. So, I missed 2 weeks in the hospital and home recovering. While they were doing that, they went ahead and put in my chemo port and a feeding tube to use as a back up in case I had trouble recovering from that surgery or from the upcoming chemo.
I'm learning a lot (not that it was stuff I wanted to know) and I've lost all sense of modesty at this point.
I go back to the surgeon Thursday to check his work, but I think I'm healing well.
In the meantime, Dr. Chapman at Wash U did review all my scans, reports, etc. and was in full agreement with the folks at Baylor that my tumor is not, at this point, resectable. He was in agreement with chemo course we have planned. And, in the best news of all, my insurance only billed me $9 for his consult. Best money ever spent. Thank you to all who recommended him. Once we see if this is shrinking, I plan to have him take a look again. I want it to shrink enough to be removed, but placement is another sticky issue - mine is wrapped tightly around both sides of the biliary tree. It hasn't spread, but it's just in the worst possible location.
I go to chemo class this afternoon, whatever that is. I am supposed to start chemo Friday, but am still waiting on approval from Blue Cross. Really? I just spent 12 days hospitalized, had every alphabet test known to man and they drag their feet on approving chemo?????
So, all in all, I'm hanging in there right now. I lost about 15 lbs over October and it was weight I did not have to lose. So, I'm moving slow and in very baggy pants. My husband has been an amazing caregiver. I am trying not to overwhelm him with being needy, but I don't always succeed.
I was told by several medical friends in high places that they felt I was in a better place at Baylor than MDA for this particular cancer because of Baylor's top liver transplant program. And, it's 8 blocks from my house. I am very happy with my oncologist, he's kind, but no nonsense and isn't going to blow smoke up my skirt needlessly. He's anal retentive and I like that in a guy whose job requires it. All my primary care doctors (and my surgeon) said he was the best and the surgeon said he brought his own brother down from Tennessee to have him treated by Dr. McCollum.
Anyway, that's my rest of October/into November. I went back to work yesterday for the first time. I'm working from home today and tomorrow.
Hope you are all hanging in there,