This morning I had the echocardiogram to clear my heart for chemo. It was supposed to take 15 minutes, no big deal, routine thing, like an ultrasound. After about 45 minutes of taking pictures, pushing me this way & that on the table, the tech says "I'll be right back". Thats never a good thing! He came back & said he thought he had found a small hole in the top of my heart, told me it probably wasn't a big deal, just they were going to have to give me an "agitated saline" IV & take more pictures. So much for my "no needle" day. Anyway, that took another hour & he wouldn't tell me a thing about whether the hole is big or small. Nice way to start the day.
Before that I met with Emilia's guidance counselor at school who was wonderful. I mean the lady has a black lab named Don who comes to school with her every day - she has to be a good person right! We talked about EB & looking out for her thru this process. She asked me a question I wasn't prepared for - what am I going to do about wigs? I thought, really, wigs are not on my mind. I'm planning to be bald & beautiful & anybody who doesn't like that, guess what, look the other way! Then I realized I may have to have a wig for the kids sake. We shall see.
So after those 2 things I went to work for a few hours before resuming my now almost full time job of being a medical patient. Saw Dr Holt - I like her more each time I see her. She said we need to leave the drain in until they are ready to start radiation. But she did have them remove the sutures so thats a step in the right direction! The drain is such a pain - it pokes me & it hurts when it pulls too far. But alas it is there for a reason...
After that I saw Dr Johnson, the radiation oncologist. He is the least impressive of all the physicians I've seen so far, but then I realized that radiation oncology is a kissing cousin to radiology & we all know how I feel about those guys so I probably didn't let him start from a fair position. He was 30 minutes late taking me back & it was a good hour after my appointment time before I saw him. And then I only saw him for about 15 minutes. He said its too soon to start radiation - wants to do it sometime between 4 & 8 weeks post-op and he wants to wait for the breast biopsy to finalize his treatment plan. So I will see him again next week. I can hardly wait. Not.
In other medical news, I am scheduled to have labs & see Dr Keedy at noon on Tuesday & to start my first infusion at 1.30 Tuesday; of course that is all pending the biopsy results which we will have Friday late or more likely Monday. Thats tomorrow at 8. Hopefully its relatively painless & I can go to work following the procedure.
Photo therapy is hard for me tonight. I'm in a shitty mood. My clothes are too tight, my leg aches, I'm tired, I'm irritated at how much time all this takes, and frankly I'm terrified of Tuesday.
So I chose a few pictures that I can't help but smile when I look at!
|Emilia & I at Disney World in 2005|
|Eriana Early 2007|
|Eriana August 2007|
|A BIG fish EB caught in Naples Harbor; |
she fell off the boat in the process!