I suppose that a lot of people, at some point, have to take, or stay on steroids for awhile; and I bet that everyone has their own story on when they are able to come off. Woop-tee-do, what the body tells you is happening, is happening, plus some. A lot of what I was feeling the first week, the Dr.’s called it right; these guys know their stuff, and I ‘m glad they do, and call it out.
Let’s drop back a little bit, and I’ll recap what was happening as I was on Dexamethasone and Famotidine, (these are the steroids, with a sedetive to help them along!), along with the anti-seizure med Keppra. Like your speeding along, you never sleep, always hyper, and constantly eating. Probably 4000-5000 cal. per day, and I still lost 9 lbs! Can you believe that? You just keep going, with a lot of naps! And the thing is, you feel great; you are always in a great mood, (which is a good thing), and you come up with some great ideas. Now in my situation, I couldn’t have water, still can’t, because my sodium was so low, which also led into the seizure, along with exhaustion, inflamation on my brain after the radiation, and no meds. AAAhhhh, did I follow the program?? For what happened, not so much; I think we’ll go a different route in the future. My surgeon, Dr. Yang, was jumping up and down, (almost!) that none of this was tumor related, this was all inflamation on the brain, which is common 4-8 weeks after radiation stops, and will stay in that condition up to a year. That’s why I’ll stay on the anti-seizure meds, (keppra), for at least a year, or more; you do what you have to do. Because of all the Gatorade that was going down for the electrolytes, let’s just say that 4-5 little pee breaks was happening during the night, which didn’t really matter, since I was up anyway!
So then you start reducing your dosage each week, and so the week that your FINALLY off, that sleep schedule couldn’t be more confusing. You try to keep up with what you were doing, but then you feel SO tired. You are still hungry, though, so that was good. Your muscles, for me it my legs, feel so foreign, you just have to trust that what you’re doing, is correct, because you can’t feel everything. Now, this is just for about 3-4 days, and then you’re just tired. One thing I’ve noticed, I lost a lot of muscle. Probably much of that weight loss, (9 lbs) was muscle. You just have to keep going on the workouts, suck up our ego, and start from square one. That first week, one set of whatever I was doing, tired me out. Second week, add another set, third week, add another if I can. You just do what you can, and do the best you can. I don’t even think about a few months ago, which could have been a great time in my “physical” time frame. Why try to go there? Maybe we get there, maybe we don’t; really who cares, as long as we’re safe as we go along, and we give it all that we have. What else can we do? As we’ve said before, life changes, a lot, and it is kind of exciting to get over, and/or back to where we were. Again, what else can we do??
Now my taste buds are coming back. They were so out of wack; if someone offered a meal or nice wine, I can have it, but why? I didn’t really have those buds poppin’, so let’s just stay with my simple diet. It worked, so let’s stay it. Now we have taste!! LOVE IT !! Another thing starting happening; as you start “coming down” you lose a little bit of that enthusiasm that you had; and you really must keep that in back of your mind, because of everything else going on, you CAN’T let yourself get drawn into that thing of getting a little depressed. I was told that that might happen; so I was expecting it. You have to ride it out, that’s only for another 5-6 days, but you have to stay up, and do something that relaxes you, or something that you really enjoy. It makes a huge difference. Know it’s coming, but you can ride it out!
Friends are a big part of this. I get together with friends, and their conversation/help really helps how things go with me. It just means a lot. By the way, I tell them I’ll go ahead a play poker, even though I’m coming down, and I take their money! That, my friends, will keep me in a good mood!! In all honesty, we had a good time, and I did come out a few bucks ahead, we just had a good time, so again, friends really help the situation. As I’ve said before, and you’re saying AGAIN, but yes I am saying it, I am a lucky guy with the people in my life; and by the way, I’m SURE that you’ll hear that a few times more. Just know this, you guys, we all go through things, some you might call shit, but it’s not. It’s really not. Had it not been for this seizure, I wouldn’t have this opportunity that I have, to have a public voice, like UCLA wants me to have. This is what I have really wanted to do, and now I’m doing I what to do; now that is what I call ” the shit”!! Cool stuff, and I really am happy with all of this; and you all will be the audience. By the way, I’m going on the air, on April 9, with a lot of my story, about , well, I guess everything. I’ll put all of the info up next week. Time to have fun! All of us. Let’s put it out there; if you have trained with me, you know I make you smile, or grimace, doesn’t matter, does it…..