This Was Not My Best Day

Wednesday I had a terrible sick day. I had 16 diarrhea trips to the bathroom, 7 of those were before 9 AM. I thought I might have food poisoning or something. How would I ever know if I had something like that or if I am just having a bad day? Who knows?
All I could do was sleep and shit all day. It got so bad that I called Cindy at work and asked her to come home. I think that has happened only 1 other time in the last several years.
I could not eat, nor did I have the energy to get to the kitchen to get food if I was hungry. All day I had just a boost shake, and about 10 pieces of pineapple.
Finally I got up the courage to check my temperature at about 6 PM. It was 102. Normally a half a degree is all it takes to really screw me up, and make me weak and dizzy to the point of losing motor skills. So a 102 is about hallucination time.
So not withstanding all that I was of course primed to hear the result of my blood test that would decide if I got into the drug study or not.
So the moment we have all been waiting for….
I scored a 1.3 on INR again. No change. Novartis says I cannot be tested again and has eliminated me from the study. That’s right after 8 months of waiting I am out cold. The dream is over. I guess now it is back to MUSC and some other type of treatment. Novartis would not make any kind of exception or concession to let us try again in a month despite the CT scan or anything. They have simply shut the door and told me to screw off.
So 8 months of waiting 4 trips to Duke, 1000’s of dollars in personal costs to try to get in the study all for nothing. Not only that, but now I have been letting the disease run unchecked all this time, because no other treatment could be used as it would conflict with the study.
As you can imagine I am not in the best of spirits over this.
I am still sick today. Temperature is down to 100.5 but that completely incapacitates me. I have not really dealt with the news myself yet. I have to get healthy first, and then I can get mad and depressed and so on. So I have kind of pushed it down for now, but I knew that all of you would be going nuts to know the results.
The emails started this morning. “Did you get the results yet?” Yes, but I don’t want to talk about it. So here it is. I am not ready to face the reality of the news yet.