Wednesday, October 3, 2012
Overwhelmed
So the MRI went poorly. The doctor visits were incrementally better. The results were mixed and I'm in a haze. There are decisions to be made everywhere. Analysis paralysis.
I'm still sticking with my original plan. Get more information & then decide. I'm waiting my test results from FoundationOne. I'm seeing a doctor in Columbus and I'm seeing a doctor at Sloan-Kettering. I also think my MRI was botched which lead to the mixed results. So I'm getting another MRI on the 16th so we can accurately tell what's going on.
In the meantime, I'm still taking these guys:
I always think about how expensive these little guys are. The sorafenib (Nexavar) is $80 per pill. Most days I take 3 pills for a whopping total of $240 a day in medication. Some days I take 4 for $320 a day in pills. One day I dropped a pill on a public bathroom floor. Don't judge me. I picked it up, wiped it off and took it anyway. There is NO WAY I'm throwing it away. I took the whole bottle to work one day and freaked out leaving it anywhere. It's $9,600 worth of pills. The cleaning person stole a $1.25 bottle of Dr Pepper off my desk. If they knew I was stashing thousands of dollars of pills, they would be gone in a second.
Keep me in your thoughts and prayers as we try to get this mess straightened out with the tests and next steps. I'm driving myself crazy.
(also if the picture doesn't show up - I'm too worn out to care)
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What is the Nexavar for? What drugs are you taking that you believe is helping shrink the tumor in some areas? I had two grapefruit sized desmoid tumors removed from my left hip and butt muscles. I was in so much pain before, I had some relief but am starting to feel the sciatic pain again. The only option they gave me was radiation which I'm 32 years old just married in June and would like to have kids so for now I opted out of that one. I am interested in any drugs that may help shrink it, what are you side effects? How did you MRI yesterday go?
ReplyDeleteHi. My name is Diannah, and I live in Oregon. I came across your blog today while engaged in some of my usual nonsensical research (I don't suffer from desmoid tumors or anything similar but was curious what they are). Your writing is so honest and evocative, and I am certain it has tremendous value for those who suffer from chronic illnesses that come to dominate lives. The unasked-for wisdom that you've gained and shared over the past several years is a genuine gift to others. My sincere hopes for an end to your struggle.
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