Day 1 EPOCH - Hurry up and wait

 We used the first part of the day to pack an embarrassing amount of stuff "to make me comfortable." When we arrived at 2:45pm for the agreed upon time, there was no bed in my room. No big deal. They all seemed embarrassed. Really - no big deal. People in and out as Andy and I hung around. Mason came with beautiful flowers but was chastised - they are a danger to those whose immune systems are compromised. (But mine is not at this point.) They were nice and let them stay awhile but he took them to his car. 

It is 8:30pm and I am still not hooked up to chemo. There have been lots of problems getting my port accessed...blah blah blah. 

My son asked an interesting question I should address. Why the urgency in the last couple days. 

I was on the clinical trial drugs that seemed to help me with the rashes (I still have them but the itch is manageable), the swollen lymph nodes (although I still look weird), and the need to take Prednisone to manage the swelling hands, joints, etc... If we don't jump in to chemo now, while those drugs are leaving my body, I will have to start taking other things to manage these issues. 

Also, it is just time. My body is showing me - I don't have the discipline it takes to do the alternative route. The disease is advancing. I'm stage 4 with lots of symptoms and growth. I can't wait for it to take over a vital organ or organs. 

So I am here, trying to be "in neutral" so I don't get impatient and submissive to the authorities (they just gave me 120mg Prednisone at 7:30 at night. So much for any sleep tonight. 

I have lots to comfort and keep me warm here. Thoughtful gifts that mean the world to me....






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