Monday, September 24, 2012

I am a lab rat

It's official. I am enrolled and one week into my clinical trial drug. I am a lab rat. So far, I have not experienced any side-effects from HKI-272 (Neratinib) pills that prevent me from doing my daily grind. I get tired easily when I move around too fast, and when I go up a flight of stairs, I get out of breath quickly. Perhaps it’s the extra weight I am carrying – which is causing me more stress than anything else. I had one episode of diarrhea (gross, huh) and Imodium fixed that after one dose. And I still should not drive until I get a good ‘swelling has reduced around your brain tumors’ report.

I go back to John’s Hopkins on October 15 for blood work and cognitive testing. The docs also give me written and oral tests to check my memory, emotional state and speed of responses to questions, and they check my motor skills to see if my brain is changing in any way. I get my next MRI and CT scans in early November, so I will not know what is really going on inside of me until then. I am always in an eight week cycle of waiting-for-results mode.  

Have I mentioned lately how much I am sick of this disease? I hate it. I really do. I am sick of the 10-12 pills I take every day. I am sick of waking up at 3, 4, 5 am every night. I am sick of my face looking like Ursula in the little mermaid. Seriously, my neck actually wiggles like a turkey and my face looks like a moon pie. I can’t even fit into most of my clothes because my torso is so bloated.

Yet, I am trying to keep it together. I am trying to cut back on carbs and sweets and salt. I am trying to find semblance of control in this stupid mess where I can’t see, feel or know if anything is working.

As usual, I don’t like to end a post on a negative note. Chris and the kids, my family and co-workers continue to be awesome supporters. Erin and Grace are doing well in college and Jake likes his ‘only child’ status at home. Weekends in the valley with Austin and Taylor and Chris are a sweet relief from the chaos of the DC area. There are many blessings in my life. And I appreciate each and every one.

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