Wednesday, July 2, 2008

It's time to go home, so how did it go?

I've been here a week now, so how did it go. Surely I cannot tell all about it in one post. I'll just tell about how anxious I am to be going home today. NOT because of anything bad, but just because I am tired of being away from home. It has been GREAT being around the people that I have grown to love so much on the 3rd floor of St. Francis Hospital - Bartlett. I wish I could put every picture I have up here I would, but it would take up so much space, and there are some I did not get a picture of, so some would be left out, and that would not be fair, and, and, and, well you see how it would go. Fair is only fair. Each one up here is just supurb, and that is no exaggeration. I could give out Torch of Excellence Award cards for everyone up here; they are all so awsome.

It started in Admit/Holding - No, it began shortly after coming in the door. There was Evelyn from Admissions who gave me a warm greeting, and then several others that Jim and I both knew who stopped to speak to us. Time passed, though, and unfortunately, they informed us they could not find my orders, so we waited while the doctor's office faxed over yet another time, copies of my orders. As Jim, Jimbo, and I continued to wait, : : : groan : : : who should appear but none other than Jane Garret. We chit-chatted for a while. I was truly exhausted, Jane made sure I had a hospital bed in my room in Holding. Aaaah, to get out of Oscar, and to lay my body down. Thank you Jane.

They were all so -is the word nice?- in trying to access my port. Getting in and being able to flush it seemed to be no problem. It was being able to draw blood that gave them the problem. I mean a BIG problem. They stuck and restuck, and oh, restuck me! And guess who had their camera at ready!! Yep! I got the picture of BLOOD RETURN!! One handed!

Treatment. You know I was experimenting with the mestinon before I came in, and was going to broach Dr. Saeed about reducing it, or cutting it, or *something* or other with it by the time I was coming out of here. I started talking to each person who came in, and each would say "You have to see Dr. Saeed about that," and okay, that was fine, but Dr. Saeed never came by until after the weekend, so I had to wait and wait for him. Grrr.

I guess the wait was good, though, because he got to see what going totally without it was like for me for almost a week, and he had a good solid look at what it would be like to cut way back on it. Good news! Not only did he see what I *thought* I saw, but he also mapped out a plan for the road ahead in cutting back toward remission. Contained within was the word - shhhh now, very carefully say prednisone! Yep, he said starting to cut back on the prednisone after all this time. Oh, could anything ever be so wonderful! I know it's not right away, but it at least is being considered now.

Jim's cancer is gone. The chart to my remission or control or whatever name you want to put to it is in sharper focus. Sounds great for us!

If things go as we think they are going to, the next treatment will not be here, but in Jonesboro at the infusion center. I've told Jim and Dr. Saeed that I do not want to change. No choice. But sometimes change is good.

We'll see.

More on this past week later. I hope I can get it posted before I forget it all. It really has been a good week. I think I even found some new! future in the blog world, too.

We'll see.

I'm getting this posted before the sun goes down. Hey! I'm getting it posted before lunch time. Two entries are getting posted before lunch time. If I try I might get better than squeezing my posting in late at night in the middle of the night.

Striving for a world without Myasthenia Gravis

No comments: