Lots to say

Hi everyone- I feel like there is lots to say- but I am kind of out of energy to discuss it. Just a little tired today. Yesterday I had my 4th in what is going to turn out to be 5 exchanges. As you might remember, I was hoping to only have one. I have been able to stay pretty up most of the time, but I am kind of drained today. Hey, it happens to the best of us.

We had a little trouble getting to my veins yesterday- that is the first time I have ever had that happen, so I consider myself pretty darn lucky. I think it is fantastic that we haven't ever had an issue before. It makes me feel blessed that I don't have to have a central line to have this done whenever I need it.

There are two nurses down at St. Elizabeth's who take care of my pheresis treatments- it is a very specialized field, and they are wonderful women. Danata was running the exchange yesterday, and she didn't hesitate a second to call for someone else to run a different kind of line so we could complete the exchange. If they hadn't gotten it on the last stick, I would have ended up going home and coming back for another treatment on another day. It is a testiment to how good she is that she called someone who works more often with the other lines, rather than just to keep fishing. I am grateful to have both her and Janice taking care of me on a regular basis.
The big thing is that I am feeling much better and that I will be having one more exchange, problably on Saturday morning.

We have to wait to make sure my arms are up for the fifth treatment- my blood levels are bouncing right back, but my arms are pretty bruised and we don't want me to get down there and then not be able to do the treatment. I also have a cold, so we it isn't a good idea to go ahead if I am not feeling up to it. If I have a fever the 5th is off- until I am better. I am following all the instructions, not lifting anything at all and icing- and now heating my arms to help "plump them up". The hardest thing about it, other than the discomfort, is trying to tell little Thomas (who isn't even 2 yet) that I can't pick him up. When he asks, I just sit down on the floor with him and give lots of hugs. He is a real snuggler, so he seems pretty content with that most of the time.

Katherine has been fantastic through all of this. She just seems to think it is totally normal for me to be spending all this time away from them in hospitals. I was thrilled out of my mind yesterday when she asked if I was going in to the hospital and I said yes. She asked if Nannie and GrandDad would be babysitting, and when I said yes, she said, "yippee!!!" It made my heart soar. It is really great that she is adjusting so well. I am proud beyond words of Katherine, Thomas, my parents and Jason for all their constant love and support over the past 2 weeks. (not to mention the past 12 years and most especially the last 3) Everyone in the family, our neighbors and friends have been beyond supportive, and I do feel the good thoughts and prayers everyone is sending. Thank you all so much. And a special thanks to cousin Margo for keeping me laughing.

It surprises me that after all these years, I can still be learning new things about the disease and about the treatments. Yesterday I was happy to hear that the reason I see so many different types of doctors down in Boston is that once Dr. Gorson orders the pheresis, I am then pretty much controlled by the hemotology/oncology unit. Makes sense, but I never thought about why I was being managed by anyone other than Dr. Gorson. Dr. Parameswaran has primarily been managing my day to day treatments, and she has been great, too. She has such a calming demeanor- and she even laughs at my jokes. Not to mention she TOTALLY knows what she is talking about. Wonderful combination. St. E's is a teaching hospital, so lots of docs come and go, but they are almost all really great. And if they aren't, heck, I am on steroids, so I just tell them that I am not thrilled with the care I am being given at the moment. This disease is too hard, and the drugs do so many crazy things to you to keep your mouth shut, I guess.

I was going to try to post some pictures of this last treatment, but I just couldn't bring myself to do it... I just don't look like myself, and I am pretty sure if I did post the one with me and Danata that she would never ever forgive me. We both look drugged. ha. The other pictures of me- my ego won't let me post. I will find some better ones to share with you all!

Thank you all again for your unending support and good thoughts.