I know I drop off the internet (unless you are on FaceBook or Twitter with me). Sometimes a blog post is just more than I can contemplate. Funny thing is, I am still composing them in my head at the same rate I always was.
I am in my fifth or sixth month of Pomalyst. I'd have to go back and look. I causes severe mental confusion and agitation. I know there are times Tommy and Frankie have to tell me to "Ma! Stop! You are upsetting me.". I take is every night for fourteen nights and then spend the rest of the month coming out of it. As usual I made all kinds of assumptions based on the first month. I only make myself crazy. Of course the symptoms cleared up quickly the first month, I was on the lowest dose possible and there was no build up in my system. So it takes longer each month to get back to normal. And they have have doubled my dose, which is still only half what the average patient takes. But Thalidomide and I have never been friends - Pomalyst is the latest generation of Thalidomide. Next was Thalomid, but that was before my adventure started. Then Revlimid and we all remember what fun I had with that in the summer and fall of 2010!
And now it's Pomalyst. Which is seventy times more powerful than Revlimid.....I was told by a very proud and happy Dr. Miller. Pardon me if I am not so enthused.
But it's working according to the wonderful Dr. Miller, so on we go!
I try to start on the 1st of the month and plan everything for the last week of the month. Sometimes life cooperates. For the fourteen days I stay with Tommy in Staunton. Which compared to Craigsville is fabulous. Seriously, there is a little trolley system that gets me around town. I am fairly independent, something that drove me crazy in Craigsville. I can walk to the library, several stores, the post office. And it's a college town and I like the vibe.
The other 23 hours I sleep. Haha! Just kidding, it's not that bad. But the other day, after being asleep seventeen hours, Tom felt the need to tap on the bedroom door and make sure I answered. That's why he's my favorite caregiver. No smothering there!
So what happens the other two weeks? Well in March I had dinner with my goddaughter Debbie, shopping with my friend Kathy, visited my mother and set up my new storage (I have stuff all over Massachusetts!) in a convenient area. Saw some other friends and had lots of laughs. Spent time with my son Frank.
And.....best of all......two days and one night with my grandson, Frankie, Jr. He is the most beautiful baby ever. I could have just sat there gazing at him. Of course, he is wild like his father, so there was no sitting. There was hide-n-seek and singing and dancing and playing with trucks and blocks until Grandma Di was almost conked out on the floor. But when he laughs, everything is worth it. He's learned to almost say "please". It comes out "peas" and when I hear it, there is nothing I wouldn't give him. But like I said he is his father's son and he can be imperious. I shouldn't laugh, it's gonna get us all in trouble later. I was cutting a banana and putting two small pieces at a time on his plate. His mother had mentioned that sometimes he stuffed too much in his mouth and made a gagging sound. Well, no, I wasn't going to deal with that. Anyway, at one point I didn't put the new pieces of banana on the plate fast enough and he tapped the plate with one finger like the royalty he knows he his. And I doubled over laughing. "Yes, Your Highness!"
So I fit in as many things as I could and scooted back to Staunton by 4pm on the 1st. You take Pomalyst at night, so I was ok.
My cousin is getting married in May and it is perfectly timed for me - May 30th! Ha! The best I will be all month.
I've learned not to pile too much into that time. I set two things that must be done during my "up time". Then things that if I get to them, I get to them. It's much less depressing than when I was trying to cram ten things into those few days.
But overall, life is good. I know I am better off than zillions of other people. I am grateful everyday.