I had the CT Scan done on Tuesday, Sept 28, blood work on Friday Oct 1 and met with
Dr Rooney on Tuesday Oct 5. The wait in between was long and stressful. I felt lousy physically and emotionally a wreck. Because I am not a Dr and I have nothing to do to occupy my time I spent most of it thinking all the possible negative things.
So, the outcome.
I do not have four tumors. That is a gross misunderstanding of information that I have been carrying for 6 months now. There is one in my lung and it has gotten smaller and that is just about all we discussed about that tumor. There is a second tumor/mass that is in behind the intestines, in front of the spine and below the pancreas. This is the ONE that I referred to as in my stomach. Jim referred to it as in my back. I believe it is in my abdomen. I will confirm next visit. But the fact of the matter is it is only one tumor.
The brain tumor brought the best news. The tumor presents itself in a specific manner on the CT Scan. When the tumor is gone it leaves behind scar tissue which also presents itself in a specific manner on the CT Scan. And, they are exactly the same. So the Dr's take the scan and my physical appearance, cognitive skills and determine if what they are seeing is the tumor or scar tissue. In my case Dr Rooney feels confident it is scar tissue. There has never been a problem with my cognitive skills and believe it or not the fact that I am bowling is a huge factor in the determination.
So, now that I have more information and less stress, I believe part of why I've felt lousy for the past month or so is because the medicine stopped working. I called to let the Dr know my stomach pain returned a week after my markers went up and now it's been over three weeks without a treatment. We've had to increase the pain med dosage to help with that. I will start a new treatment plan next week. Three weeks with one treatment each week, one week off then three weeks with one treatment each week, one week off. The blood work will actually determine how long this goes on for. I am hoping the new medicine works, it was really nice not having any pain.
Another two weeks and I will be off the steroids which is good. I asked the Dr about foods and drink, what should I avoid etc. I specifically asked about caffeine/coffee and he said 'If you like it drink it. As far as I am concerned it is one of the four major food groups'!! Guess we know where he stands on coffee.
That's it for now.
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Woohoo, sounds like you have the tumors on the brain now. Keep posting Mom and Donald
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