Sep 14, 2011 - 3:12 am
Such an incredible roller coaster. But at least it's good news this time.
When David first had a recurrence back in July, his insurance denied the treatment that his NO wanted to do, because the way the chemo was delivered---bypassing the blood brain barrier--is considered experimental. David's NO, Dr. Neuwelt, personally called the director of the insurance company but it didn't do any good. That denial is what led us to look for other options and ultimately led us to NIH and their clinical, which did not work. So when I contacted OHSU last week, they went back to their efforts with the insurance company.Now the insurance company approved that treatment. I CANNOT BELIEVE IT---after all of our tears and agony. But.....now we don't want it any more. NIH told us that it wasn't being done much any more and that there are some serious side effects, like brain swelling. I told OHSU that NIH had said that, and OHSU said that is not true. Can you believe it? The lack of agreement between experts regarding treatments etc is so hard. I keep telling myself that it's because they just do not know what the answers are.
OSHU looked at David's MRI and they don't think it looks that bad. They said that David is not "in crisis" and they want to wait a week to let the symptoms from the clinical trial treatment abate, and then do some more tests....a special MRI using iron, to see what the blood flow looks like....seeing what is tumor, what is scar tissue, what are blood vessels. They said that they are seeing many pictures in the MRI and it's really hard to see what is what and to really tell what is going on. They do feel that David's tumor did not grow maybe as much as NIH thought. So that's all good news. It just really messed us up about the clinical being approved after the HELL we went through when we were first denied. We had called the newspapers, the radio stations, the governor's office, national and state lobbyists, national and local advocates, the insurance company, and after all that, they still denied us. Now they reversed their decision. I just cannot figure it out.
I feel bad that Dr. N and his staff went to all that work to get approval, and now David doesn't want to do it. He would rather start with carboplatin with maybe etoposide, or Avastin. I sure do not want to do a treatment because we feel bad that the dr worked hard to get it....sheesh!!!
It's been an emotional few days. Dr. N is going out of town and we will try to get the special MRI done before he gets back. The earliest we can see him will be Wed.--a week from tomorrow. I hate procrastinating on treatments but Dr N assures me that it will be okay. In the meantime, David is feeling pretty good. He shot 18 holes of golf yesterday and plans on golfing tomorrow too. (We have out of state family visiting and they are avid golfers.) David is still in really good shape. He hasn't been having headaches. Just mild stomach aches and he's a little tired. His cognitive abilities all remain intact and his scores are all 100%. You would still never know that he's sick, except that he's pretty thin. I thank God that David is still doing so well. I hope and pray that he can stay that way for a long time. I'm afraid to plan anything like a camping trip etc for more than a week ahead of time. I am trying to take it one day at a time but I am so churned up emotionally. I know that it's all good news but I am just really feeling a lot of anxiety.
Sometimes I wonder if it really matters what treatment we do. I sometimes think---either it's going to come back, or it's not going to come back--regardless of what we do or don't do. But I'm afraid to base decisions on that theory. So hard to decide!!!!
Love and blessings to you all,