Sunday, August 28, 2011

A whiter shade of pale...

I've had a great weekend with Brent and friends. The weather remains really dry here, but quite beautiful.

I have continued to feel well despite bouts of itching, which are fairly manageable with Benadryl. The vitiligo (absence of pigment in the skin) has increased rather dramatically. I even fancy that the itching seems to occur most in the areas that then suddenly develop increased vitiligo...but that may not be an absolute. At any rate, it is no longer a question of its presence at all. It will be interesting to see what Dr. Weber has to say about it when I see him on Sept 9. I will be repeating all my scans on Sept 2, so I will keep everyone posted with the results as soon as I know them.

There is an interesting webinar on anti-PD1. It really explains the entire mechanism in a very understandable way. The speaker also addresses the work that Dr. Weber is doing.

If you are interested, go to:

Click on the anti-PD1 webinar. You will be asked for your name and email address in order to watch but that is all.

If you do watch....two points from the question and answer session I can clarify. Dr. Weber did not choose patients with specific HLA typing due to what he is testing with anti-PD1, but because of the concomitant use of the vaccines, which makes that typing necessary or the vaccines won't possibly work. Also, at least some of the patients in Weber's trial ARE treatment naive, at least having had only radiation and surgical procedures, like myself, but no other chemical agents.

..and so it was that later, as the miller told his tale, that her face at first just ghostly, turned a whiter shade of pale....(B never gets my musical allusions!!!!!)
May you skip a light fandango!!!! - c

Thursday, August 25, 2011

Life is just a party, Baby!!!! least in August! What a wonderful whirlwind!

First, there was the annual Peds Care Picnic/"act like crazy people singing and dancing" afternoon, thanks to Doctors Riesco and Michaels as well as Jenn H, Tammy L and Jay! Thanks to my crazy Jennay for playing and acting a fool with me. It was a lot of fun to be with all of you that day!!!!! I am so lucky to work with some of the best people I know!!!

In keeping with that sentiment....Rosie and I had been thinking of throwing a little lunch for all my great supporters at the office. We were finally able to do it once she got home from her summer session at Georgia Tech. She and I had a great time getting the supplies and fixings. We took down a ham and turkey with sandwich things and she made TWO delicious cakes for everyone to sample. It was our small way of saying thanks for all the support and warm thoughts and prayers that have been sent our way during the past year and then some!!! You have all meant so much to me and my family. Sandwiches will never pay it back, but we wanted you to know!

Then, with Rosie still providing the inspiration, and most of the work!!!!!!...we had ANOTHER party. SO LOVELY! Fred-o was back home on break by then and together they put together a delicious menu of chicken poached in wine and tarragon, blanched asparagus in a vinaigrette, pasta salad, and desert of ice cream and brownies with all kinds of toppers. Not to mention the before meal snacks of humus, crudites, olives, chips and Bent's special mojitos!! THEN....they were the greatest hosts to the best guests ever!!!! Keeping everything going and everyone served! Thanks, lebchukens!! All my special supporters were able to attend! It was great to get to visit and laugh and for all my dear peeps to meet the other dear peeps that each had heard such great things about. Thanks to all of you for all you do, daily, and for sharing that special evening with me.

I was able to visit with the kids for the next couple of weeks. Dinners are always so much more delicious and fun when we are all together!!! They were busy bees doing all sorts of chores for us...inside and out. They were probably ready to get back to school to get a break!! And so they are...both returned to their schools...getting busy with their fall classes. I am so proud of both of them! Thanks, guys!!!

And now....23 years!! Yep, me and Bent...tomorrow. As he says...."Now, that's PRIME!!!!"

Enjoy the party - c