Day five - too weak to type (or talk)

Well, the fourth night into the fifth day has been rough. Heather is actually sleeping right now, so I thought I would update her blog for her. Things were seeming pretty easy for her after the first few doses, she was convinced she was going to sail through with minimal side effects. 

Well, it was the preverbal calm before the storm. The reactions seem to get worse with every dose. Sometimes she just itches, as you have read, but lately, she gets to the point where she feels the urge and incredible need to jump completely out of her skin.  Thank goodness smart people invented not only drugs that make people feel horrible, but also drugs that can combat the evil feelings. She has been getting various combinations of Demerol, Ativan, benedryl, clonazepam, and others. I'm not sure exactly what she last got, but it seems to be working great because she is still snoozing away!!  

She has remained on schedule with the IL-2.  She had her 12th dose at 10:00 this AM with only two to go!  She is set on getting all 14 doses despite the fact that all the doctors and all the nurses have told her that very few people actually get all 14. Doses get skipped for various reasons. BP too low, HR too high, fluid in the lungs and many times simply because the patient is just too miserable and needs a break. Not our Heather. I think she would drag herself to the pharmacy and mix the drug herself if they told her she was going to have to miss a dose :) and right now she barely has the energy to lift her head off the pillow when she is awake. 

The good news is once she stops the drug, there are no lasting side effects. She should be feeling back to normal by the end of the week. Then.... she gets to come back down on the second of November and do it all over again. Whooohooo what a treat :( 

But then she is done for a while. We wait about 5 weeks after the second round is done and then go in for another PET scan and find out if it worked or not. 

Thank you so much for all of the love and support. I have always known we have been surrounded by good people, but something like this happens and our amazing friends and family amaze me more and more every day.

Kelly