Tuesday, July 28, 2009

Update July 28th 2009

Yes, I know it's been a while. And, I know you all have eagerly anticipated my next update. Well, you can stop anticipating now :)

I went on the new medication, brand name Afinitor, about a week ago. So far, so good. The most noticeable thing I've felt is a major reduction in my appetite, which is not really a bad thing. I'm sort of fatigued, but that comes and goes. Sometimes I feel like I'm getting sick, but that goes away also. I do have some noticeable soreness on the roof of my mouth, which is to be expected. Other then that, it seems all is good.

I am working to get a Social Security attorney to deal with my ongoing battle with that agency, as well as straighten out the mess my insurance is in. I have faith that the people who are working on my behalf are going to take care of it, which takes a great deal off of my mind.

A short story to illustrate how messed up things are in our insurance system: I take various pain medications to deal with the ongoing pain of cancer. Treating pain with narcotics is a standard medical practice, and since I've been diagnosed I've rarely had a problem getting what I need, either from the pharmacy or my insurer. Since I switched to the Medicare Part D insurance things are not going so smoothly. They point black refuse to pay for my prescribed pain medication, saying it's not medically necessary. In a phone call today explaining the denial, they actually suggested I try Tylenol. I didn't even bother explaining that I've been on daily doses of pain medication for a year and a half and am physically addicted to it. If I go off of it, I get sick. My oncologist has told me he will have to put me in the hospital for a while so I can be medically supervised while going off the drugs. They obviously do not care about my life, or anyone else's for that matter. It is, in my opinion, criminal to act as they have acted.

If you think this can't happen to you, wait. If you think it can't happen to someone you love, wait. It will. We need health care reform now.

Wednesday, July 15, 2009

All Around Update July 15 2009

I went in to have CT scans done last Thursday. The results were not what I was hoping for. Apparently the tumor has grown and there are new spots on my liver. At this point, my oncologist is recommending a new treatment modality. He wants me to go on a new drug called RADD 001 which has been recently approved for kidney cancer but which also shows a lot of promise with the type of cancer I have. It's a very expensive drug and I have to apply for assistance from the company which makes it, Novartus. Right now I'm going through the paperwork and as soon as I know anything, I'll let you know.

I also went to Social Security with my father yesterday to try to get some answers regarding the ridiculous claim that I owe them $13,000. They were extremely unhelpful and I came away more confused then ever before. I now have to contact all my employers and get my payroll and HR records sent to Social Security. I have my father helping me which is good. The entire experience is so frustrating.

Thursday, July 9, 2009

CT Scans this morning 7/9/2009

Having CT scans done this AM at Cedars. Any info will be posted here as soon as I get it.