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Not at all good.
Sep. 7th, 2015 01:26 pmSince getting out of the hospital, things have not gotten much better for me.
First, I had to cancel the trip to Burning Man, which made me feel like a failure. Not rational, but after everything I've been through I've earned some irrational moments.
I've been fighting a case of oral thrush for a few weeks. This means that along with feeling like my mouth is filled with slime or shag carpeting, I can't tastes anything. Seriously, the other night we did one of the sealed packs of taco meat that was supposed to be for me on Playa. I mixed this with Salsa Brava. Seasoned beef, sharp cheddar cheese, and a hot sauce combo that should have had me seeing Aztec deities.
It tasted like paste. At best I got a sight tingling sensation, but no flavor. This with a Scoville Heat Unit rating of 600,000. That's 120 times hotter than a jalapeño pepper. Needless to say this is making eating very hard. I'm doing a lot of soup, since I can drink that.
I'm on my second round of antifungal meds for this. We may need to go nuclear, beacuse I need to eat!
Also weighing on us is the PET scan I did last week.They ordered this for one reason: to see if I'm growing tumors anywhere. If they find an active cancer, it's game over. My body can't take chemotherapy again. So we're hoping for the best here.
But it's getting harder and harder to hold on to my optimism. I feel disabled like I never have before. I feel like I'm a shell. I hate what I've become. I'm terrified of what the future holds. Being scared is becoming my normal. I'm really good for about three hours a day of any activity, then I'm done. I can't see that getting better.
So now we're just waiting for results. And more tests. If the news is bad, we're immediately starting a kickstarter to get me to Istanbul. Because that is my bucket list.
First, I had to cancel the trip to Burning Man, which made me feel like a failure. Not rational, but after everything I've been through I've earned some irrational moments.
I've been fighting a case of oral thrush for a few weeks. This means that along with feeling like my mouth is filled with slime or shag carpeting, I can't tastes anything. Seriously, the other night we did one of the sealed packs of taco meat that was supposed to be for me on Playa. I mixed this with Salsa Brava. Seasoned beef, sharp cheddar cheese, and a hot sauce combo that should have had me seeing Aztec deities.
It tasted like paste. At best I got a sight tingling sensation, but no flavor. This with a Scoville Heat Unit rating of 600,000. That's 120 times hotter than a jalapeño pepper. Needless to say this is making eating very hard. I'm doing a lot of soup, since I can drink that.
I'm on my second round of antifungal meds for this. We may need to go nuclear, beacuse I need to eat!
Also weighing on us is the PET scan I did last week.They ordered this for one reason: to see if I'm growing tumors anywhere. If they find an active cancer, it's game over. My body can't take chemotherapy again. So we're hoping for the best here.
But it's getting harder and harder to hold on to my optimism. I feel disabled like I never have before. I feel like I'm a shell. I hate what I've become. I'm terrified of what the future holds. Being scared is becoming my normal. I'm really good for about three hours a day of any activity, then I'm done. I can't see that getting better.
So now we're just waiting for results. And more tests. If the news is bad, we're immediately starting a kickstarter to get me to Istanbul. Because that is my bucket list.
