Friday, October 30, 2009

So Many Doctors - So Much Confusion!

Hi y'all,

I told you last week I had an appointment with the neurosurgeon this week who did my back surgery in May. The purpose was two-fold; first to follow up on the May surgery and secondly to get his opinion on what to do about the new lesion in T6. Remember last week the radiation oncologist suggested stereotactic radiation to T6 and wanted to act quickly.

First the follow up news - good things here! My X-rays showed no movement of the hardware and actually showed bone growing into and around the hardware. Turns out this is a really REALLY good thing because the jack (which holds the vertebrae apart) that he put in has been recalled!! My body parts are being recalled!! Turns out some of the jacks are settling and not maintaining the proper spacing. But because mine has not settled and has good bone growth around it, it does not have to be replaced. WHEW!! For about 30 seconds there in the office I was ready to either sue or kill someone.

Now his opinion on the new stuff. After studying my MRI and CT scans he poked around my back trying to isolate exactly where the pain is coming from. After checking me over he is not convinced it is coming from the T6 tumor. When he isolated the pain he taped a metal marker on my back (paper clips! my insurance company will probably get a bill for some hi-tech thingy) and sent me out for another X-ray. That showed the spot to be 2 or 3 vertebrae down from the T6. So now what? Get hi-tech focused radiation done to an area that we are not even sure is right? I don't think so! I asked him what his plan would be if I wanted him to operate, he said he would probably run rods almost the full length of my T-spine (the center part) and secure them at each vertebrae. (Remember I have tumors at almost every vertebrae in that area.) It seemed to me that this would limit my flexibility a lot but he said not really because most of our bending is done at the top (cervical) and bottom (lumbar) sections of our spine. We discussed my pain level and I told him that actually the last couple of weeks it has been pretty well controlled and I am not suffering a lot from it. After much more discussion with both him and my oncologist we decided that the most prudent course of action would be to wait to see what happens to my pain level since the whole point of any procedure would be to relieve my pain, we're not curing anything. I have more CT scans scheduled in about a month so the plan is to compare those to the ones from 30 days ago and see if there is any progression. I have very little available radiation left to work with so let's not waste it. Hopefully the pain stays under control and there will be no need for any more procedures for awhile. Let's say an extra prayer for that!

So let's move off the bones and into my stomach. I am still fighting the heavy duty diarrhea and stomach issues that started over a week ago. This week they asked for a stool sample to check for any bacteria or cultures. Today I found out those tests were all negative (which is good!) but I kind of knew that because the doc had started me on an antibiotic a few days ago and we saw no improvement at all. They usually work fast to fix those types of things. So now what? After talking with the oncologist today we decided to suspend my Nexavar, since that seems to be the only culprit left. It does NOT mean I will be off it forever, or even a long time, but I need to be off of it long enough to get rid of all remnants and let my body readjust to life without it. Many many times, it turns out, patients need to take a "vacation" from these types of meds. So if things go well I may be put on a revised schedule like on for 6 weeks, off for 1 (or something like that). I DEFINITELY do not want to go off the Nexavar but at this point I don't have much choice. I can't go on rushing to the bathroom 6-12 times a day. So I would appreciate any prayers to help me and my docs make the right decisions as we go forward.

Be Well - Be Blessed! Luv you all!

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