Tuesday, October 25, 2016
Quick update and an introduction to my new hero.....
First of all, for those of you that don't get the title of the blog as fast as Jenny and Bart did, this is the Seinfeld reference...
So a quick recap.........4 tumors total in my neck, with the largest being 15mm. I could feel all of them, and the biggest I could measure with a cool digital caliper that I bought from Lowes if I twisted my neck to a really odd angle. I could tell in the last 3 weeks that the biggest tumor was getting smaller, or at least felt like it. But in the last week it seems to have shrunk by about half of what it started.........like a frightened turtle!! (see how I tied the title in? I'll be teaching this important step in 4th grade writing soon) Now, this is not scientific, but it sure seems like it's at least 50% smaller. Great news and a HUGE praise!!!!!
I did go back to MD Anderson on Oct 12th, after the Oct 5th appointment was Aardvarked! (ties to previous blog post, this is more of an advanced, 5th grade writing step) The infusion went very smoothly, and I felt really good the week after. This week is a little rougher, as I'm not 100%, and the stomach issues have been getting worse. But going to Game 1 and Game 6 in Wrigley to watch the Cubs advance to the World Series helped!!! (Thanks cousin Chris!!!)
On to the hero part......... Texas Monthly has a cover story on Dr. Jim Allison, who is the chair and head of the Department of Immunology at MD Anderson. It is one of the most fascinating and interesting articles I've ever read. (and maybe the longest) Mindy said "this article was written to and for you!!!!!!!" It's about the research that has gone into developing and the science around the EXACT treatment I'm on!!!! For most the article would make your head spin, but it discusses every treatment I've been on, from interferon, Sylatron, radiation and now nivo/ipi. Dr. Allison developed ipi..........the wonder drug based on CTLA-4 molecules. The article points out that he is expected to get the Nobel Peace Prize soon, and I for one, can't think of a better person. His license plate on his Tesla is CTLA-4.......nerd alert maybe? But it's OK little buddy, get back in that lab and keep up the great work!!!!!!
I can't begin to thank everyone that has touched my life in the last few months......I'm humbled and blessed more than I can express.
Thursday, October 6, 2016
No, this isn't going to be a blog about the little guy above......but I need a code word for poop (I was going to say 'diarrhea', but I think that is one of the most hated words in the English language, along with 'moist' for some reason, but I digress)....so AARDVARK it is!
My alarm goes off Wednesday morning at 4:15 am for my trip/flight to Houston. I get to MD Anderson at 7:45 for blood work and head up to wait for Dr. Patel. Mindy shows up with her signature chocolate chip cookies, which are amazing, and we are called back within 30 minutes. A nurse comes in and asks a few questions, and then Dr. Patel's side kick comes in and asks a ton of questions and does an exam. Here is where the conversation takes a turn towards our odd friend pictured above. "How many aardvarks are you having a day?" "When was your last aardvark?" "Does your stomach cramp before your aardvarks?" "Is there a sense of urgency with your aardvarks?" You get the picture. A couple of those answers were yes, and here is where the problem arose.
Dr. Patel comes in and says "yeah, so you aren't doing your nivo/ipi treatment today, but thanks for the cookie!!!" Wait what???????? So I put on my 'sales' hat and say "Let me change the detailed description of my aardvarks, and convince you that I'm getting nivo/ipi in 2 hours." Dr Patel: "you can talk all you want, but you aren't getting nivo/ipi today.....and do you use a special margarine or something in these cookies, they are fantastic!!!" I talk and beg for 15 minutes and she and Mindy finally convince me to head back to Hobby Airport and fly back to Big D.
So here is the basic reason why I didn't get an infusion yesterday. In the clinical studies of nivo/ipi, they had a couple of people die........yeah, DEAD, because they ignored stomach issues that lead to intestines bursting and other nasty stuff like that. So they take any stomach issues very seriously, to the point where if you are having 5+ aardvarks a day, they may pull you off the study/drug all together. Nivo/ipi stay in your system for 60+ days, so no biggie to skip a week and see if we can take some "anti-aardvark" meds.
By the time I got back to the office I already had new appointments set for next Wednesday, and the nurse has called 3 times today to get aardvark reports. I can see it now.... Next on Fox News, we break from the hurricane coverage to give you a live update on Mike's aardvark!!!!!!
Thanks to everyone for the prayers, calls, texts and especially to Aunt Emmy and Uncle Bill who keep arranging flights to Houston, that is a huge answer to prayers!
Love to everyone! Next week possum talk!!!!!!!!