Tuesday, May 5, 2009

Chocolate Margarita

1 1/2 oz. tequila

1 oz. Godiva chocolate liquor

3/4 oz. cream

1 tbsp. chocolate syrup

2 oz. orange juice

Combine in a shaker and pour into a
margarita glass.


May 5

We met with Dr. Chiang this morning. He is just as nice as everyone has said he is. They each had a short appointment by themselves and then we all met together to go over the actual procedure. Since I didn't feel like Justin was going to need any defense (as in no doctor was going to question what was wrong with him) I didn't even go in to his appointment with him. Figured he was old enough to handle it on his own. I'm progressing!
I asked Dr. Chiang if I could get a photo of him and the kids together. After all, he's going to be the one putting an end to Cushing's for them. So here they are.

We went back to the room then because our appointment with the endocrinologist wasn't until late this afternoon. The kids sacked out. Jess, just for awhile.
This afternoon we met with the endo. Not quite what I was expecting. While he did eventually tell us he was just for after care (if needed) he seemed to doubt Justin's dx of Cushing's, questioned whether we were actually doing the right thing by having a BLA. Wondered if there wasn't meds available for them to take. I told him there wasn't anything that could be taken long term. He wanted to know if there might be in a few years. A few years?! Right, like I'm going to keep watching J&J suffer from Cushing's and get progressively worse. I don't think so. I thought that he truly doesn't understand Cushing's, especially cyclic. He was questioning their lows and normals. Thankfully he was nice about it, but I felt like we wasted time there. Not even sure that he has learned anything about Cushing's by studying the charts of all the patients that have come through his office in preparation for surgery with Dr. Chiang. Thankfully he doesn't have veto power!
We need to be up and at it early tomorrow. The taxi comes at 5 a.m. and Jess checks in at 5:30. While doing their pre op stuff over the phone today, I did ask if there was any chance of them being in the same room. The gal I was talking to said she would talk to admissions about that to make it easier. Hope that works out.
Tomorrow will be a long day with two surgeries to wait through.


MaryO said...

Best of luck tomorrow!

That endo! Sheesh! It's hard enough being so sick without waiting another couple years for some meds that may be developed, that may work, that may...

Good for you for standing your ground.

judycolby said...

Yeah, someone had actually PM'd me and said he sometimes questioned so I wasn't thrown too bad. But I didn't feel it was his place to question a dx when he seems to understand so little. I did ask him if he'd ever lived with anyone with Cushing's and told him if he had he wouldn't want them to wait. I couldn't of done that two years ago.
Mary, I thank you so much for everything. I totally credit you and Cushings-Help.com for getting us to this point. You're truly a lifesaver.

lovinlifer said...

Hi Judy,

I am Lisa A's sister "learning" from the cushings-help site... I always ask Lisa for an update on you and your children. Now, I have your blog from her. You are all in my prayers today for strength, calmness, comfort, and closure for this disease... I pray that you will have a day that seems to go quicker than the typical waiting room day...

I also read that you are in Milwaukee... what hospital are you at? I am about 6 hours north, but I have lived in Milwaukee and my doctors are actually still there as people up here don't get my situation... I do not have cushing's though... For some reason I had though you lived in Oklahoma... Maybe you do and you traveled??

Well, no need to reply to me... I just wanted you to know I am thinking of you.


Erin Kelley said...

what is up with endos and their wierd off hand statements? I deal with a fellow who -- at the pre op appointment stopped and asks "you arent pregnant are you? because I would hate to get to surgery and realize that these tests are all high because you are pregnant!" IN MY FILE were 9 pregnancy tests and the fact that my husband had a vasectomy... wow!!