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We arrived back in Dallas late last night. It was so good to be back in our home. There were a few more speed bumps and developments along the way.
My parents drove down to accompany us this weekend and to drive back with us. My mother ended up spending Sunday night in a hospital herself, as she fainted and cut her lip and they wanted to hold her overnight for observation. We were relieved to hear that there were no obvious signs of major problems and that she was cleared and will follow up with her doctors in Dallas. We were also glad they could join us the last few days, even with the added craziness!
We had figured yesterday's (Tuesday's) appointment with the colon surgeon, Dr. Rodriguez, would be uneventful - sort of a getting to know each other as there will be surgery down the line. The appointment was at 10 and we figured we'd be on the road by lunchtime. Can you believe we would think like that?
A moment into the discussion with him (at around 2:00), he said he would like to do a procedure to help me but "unfortunately" I was already taking chemo. He cannot do it now that I have already begun and that puts me at great risk of a "nightmare" situation.
"Unfortunately!?!?" Do these guys even talk to each other? I didn't come up with this plan - one of his own colleagues put me on chemo! I'll be honest with you. I wanted to pick up the snazzy LCD flat panel monitor with the high res image of my liver and begin hitting everyone in the room, hopefully striking as many livers and colons as possible. However, I felt this might reduce my chances of getting the "best" care, so I refrained. I said something like, "Well did Dr. Ziong talk with you about this before putting me on chemo?" His reply was "Don't use aggressive language. There's no need to cry over spilt milk." Christine and I swallowed our indignation about the unbelievable lack of communication and administrative organization in this department because we realized there was no need at this point to discuss this with the surgeon. Our priority was to hear him out about what to do now that I am "unfortunately" on chemo.
Dr. Rodriguez is very concerned about the possibility of obstruction of my digestion at the tumor site. If I were to need emergency surgery at my current blood count levels (mostly liver enzymes and RBC), plus the additional blood count problems that chemo will likely cause, then the situation would be, in his words, "a nightmare". He called such a surgery "very dangerous" and as having "high risk of very serious complications." Also, such a surgery could be enough of an emergency that it might have to be performed by an on-call surgeon at a local Dallas emergency room, rather than by Dr. Rodriguez in Houston. We do not want to have our hand forced like that.
So what he wants to do is go in and investigate exactly how obstructed it is now and possibly (hopefully) put in a stent or use a laser somehow to ensure that I will not get obstructed until after the chemo when we want to do surgery at the most strategic time for my treatment. This is not surgery - they can do it all through instruments up my you-know-where while I'm out. The main risk is perforation, because they try to navigate the scope through the tumor to the other side and then put in a stent. Needless to say, bleeding would not be good for me right now.
Dr. Rodriguez wanted me to postpone chemo for a couple weeks before doing another round of chemo. Then he spoke with Dr. Xiong. The two of them together decided that the delay was not desirable, as the risk of holding off chemo was greater than the risk of problems from this procedure. They scheduled this scope/stent procedure for July 29. In the end, I'll only be delaying the chemo schedule five days. (currently, the key drug is taken on a 21 day cycle twice a day orally for 14 days, followed by a 7 day rest).
The five day delay is in part because Dr. Rodriguez wanted to schedule this with who he considers to be the best, most agressive, MD who performs such procedures at MDACC. We were very pleased to hear that he was available on the 29th, which is why we will be doing it then.
In the end, we are glad to be home. And I do feel that even with the astonishing insensitvitiy of doctors, and the truly unbelievable administrative confusion, which caused many delays and unnecessary pain, I am indeed in the hands of some of the most skillful cancer specialists in the world. They found things I'm not sure would have been found and they are doing creative things (like this stent) that were never mentioned in Dallas.
Between now and the 28th, when we head to Houston again for the scope procedure and next round of chemo, I intend to live my life as fully as before. We all live under the shadow of counted days on earth. Everything is trival in light of the fact that we live such short lives. The only meaning I found in living before diagnosis is really the same meaning I find now - to work and to live "as if working unto the Lord." I have no where else to go.
Posted by Greg at July 09, 2003 03:16 PM | Comments (10)