Well here we are about forty-five days after my last post.  I would love to say that things have been moving along smoothly, but they really haven’t.  We were hoping to transition Tammy into a clinical trial very quickly, but with MD Anderson not having anything in-house we got a great big dose of the clinical trial lifestyle that if you are not a part of it, I would not recommend it.  I now understand the frustration that many of our friends with cancer go through on a daily basis.  We have been pretty lucky up to this point and everything was done in Salina or in Houston.  No records had to be sent and everything was in place.

I think part of the problem is we are used to excellent health care.  We are so fortunate in this country.  If something is wrong we go to the doctor and they fix it.  In our case we are at the very edge of what can be fixed.  Some how we have jumped out of standard medicine and into exploratory medicine.  I’ve mentioned before that most answers for my questions begin with “well,” and end with “I don’t really know.”  Well, now the answers still begin with “well,” and end with “I don’t know but lets give it a try.”  We have made so many leaps in cancer research but the experts still do not know much about it.  Most of the doctors we see are not experts in cancer.  They are experts in cancer treatment.  They know what works and what doesn’t.  That’s about it.  It’s not their fault.  That’s just the way it is, we simply do not know.

Last time we talked we were going to try to get Tammy into a trial in Memphis.  It looked like a really good fit.  Memphis is about the same distance as Houston.  Lets do it.  We made all of the calls and got things going, but in the screening process something in Tammy history or cancer kicked her out.  Strike one.

Next on the list was a trial in Dallas.  It looked very promising.  I made all of the phone calls and had records sent and was screened.  Get a call back.  Tammy is an excellent candidate, but you do know this is a randomized double-blind study.  Ahhhhhh.  Placebos are in effect and you have a fifty-fifty chance of not getting anything.  So you’re telling me that we could spend all of this time and money for two months and have the possibility of not getting anything.  Yep.  We decided this was not going to work for us.  It was to big of risk.  Strike two.

Side note-  I have the feeling in exploratory medicine that the patient is second to pure science.  I get it, they must have the science to get the drug approved by the FDA.  So shame on the goons at the FDA.  I’m pretty sure that there are probably ten thousand people with colon cancer that are not on that particular drug.  Pick a hundred and use them for your baseline.  It’s not pure but who cares.  In my non perfect brain its’s pretty simple.  Something works or it doesn’t.  You don’t have to jack around with people’s lives to prove it.

So on to Omaha.  Not the best trial that we found but it’s something.  Nope sorry its suspended.  Strike three.

So that brings us to St. Louis.  After many phone calls and lengthy discussions about the last five years of our life we finally have an appointment for this coming Monday.  She will hopefully do all of the preliminary testing Monday afternoon and finish up on Tuesday.  Hopefully, she will start the trial the following week.  We are not exactly sure what the drug actually is.  It is in the immunotherapy area and she will have to be in St. Louis every two weeks for an infusion.  Hopefully we will find out more next week.

We are excited to get something going and I’m pretty sure I was getting to be very impatient on the phone talking to people.  These last couple of weeks Tammy and I have even been more scatter brained than usual.  Some of you have been on the end of our craziness and I am sorry for that.  I wish I had some great wisdom to give you on this  post but I will just leave you with this.  Sometimes you just have to tie your hand down as tight as you can.  Dig in your spurs and hold on for the ride of you life.

Thank you for all of your support.  We love you all!!!