Hello from St. Louis.  I am sure Tammy feels like this is her second home.  She has spent almost every Sunday and Monday here for the last six or eight weeks.  Everything has been going well for the most part.  She did have a pretty major reaction to the drug on her second go round, but after talking with Doctors here and at home she decided that she would try it again.  They gave her the drug slower and added some extra premeds and it worked.

Morgan, Tucker and Tammy flew here on Friday night so Tammy could be here for her CT scan on Saturday morning. Then they had some play time. They went to the zoo and the arch.I dropped them off at the airport on Friday night in Wichita and then drove to Lawrence to spend Saturday with Tanner for Dads day for his fraternity.  We had a good day Saturday and then I drove on to St. Louis to be with Tammy for our first results of the trial.  Like normal we were pretty nervous so the distractions definitely helped.

As a side note, I am sitting here in the lobby with the kids and an older gentleman just rang the bell.  You get to ring the bell when you are cancer free.  There is always a lot of clapping and cheering.  Miracles do happen!

So what did we find out today?  The trial is working,  Many of the smaller nodules have shrunk and the larger ones are stable.  Good news!  Chalk one up for the home team!

Tammy is finishing up her treatment now and then we will hop in the car for a short six-hour drive home.  Its back to the daily grind of work and school for another two weeks until we get to come back.

One final thought.  In this time of anger and turmoil in this country, I need you all to remember something very important.  If you smile at someone they will more than likely smile back at you.  You have more in common with the person you disagree with than what separates you.  I made my choice.  Today, I think I will just smile!

Thank you for all of the support and prayers.

October eleventh marked the five year anniversary for Tammy’s original diagnosis.  I don’t have  words for what these years have been like or what they have meant to us, so I thought I would just show it in pictures.  I don’t have any answers to how to live life.  All I know is that we have tried to “live” through it.  We tried to never let cancer stop us from living the life that we wanted.  Sometimes it is really tough, but just because somethings are hard sometimes doesn’t mean that you should stop doing them.  Because they are hard we appreciate them so much more.

Tammy was Thirty-nine when she was diagnosed.  I was thirty-eight.  Tanner and Kylee were both thirteen.  Morgan was eleven and Tucker was five.  We have all grown so much.

Its been an interesting day here in St. Louis.  It started pretty early and was pretty uneventful.  Tammy’s fist infusion went off without a hitch and she is feeling pretty good.  For me it was a long day of sitting in a nice plastic chair with lots of time to think about things.

Today was a beginning for us.  It’s interesting that one of my memories on Facebook for a year ago was, “Chicago, The Saga Continues.”  If you haven’t read it’s a good one.  We just so happened to be  a little bit north and west of here in Hannibal on our way back from Chicago.  It’s interesting how some things in our lives work out and some of them don’t.  It will be a quick trip.  Tammy has to give blood tomorrow and take vital signs about one-thirty and then we will get on the road back home.

As we were sitting her all day I saw a post from one of my friends who lost her husband last year.  The anniversary is tomorrow.  She is having all of the same feelings she did a year ago.  It breaks my heart.  She is lost in trying to find who she is in this new beginning, hurting from the past, and trying to live in the present.  My heart goes out to you my friend and you will be in my thoughts and prayers.

Wednesday another good friend is going in for surgery.  She is such a fighter.  My hope is that if you read this that Wednesday morning you might look towards Houston and send a whole bunch of positive energy her way.  Let Wednesday be a new beginning for her.  Let it be a day that the pain stops and she can feel good.  I would love to see a map of the world with all of the energy passing around it.  Our thoughts and prayers are so powerful.

Today I did a lot of thinking about the title of this.  All of us, everyday, are in some kind of beginning and some kind of ending.  We are looking through our past and hoping for the future.  Most of our lives we are somewhere in between the start and the finish of things.  Sometimes the beginnings are exciting and the endings are sad.  Sometimes it is just the opposite, we find out that because it was so hard in the beginning the ending is so much sweeter.  I don’t know what the answer is to living a good life.  I don’t try to plan my life anymore.  All I know is that some days I am going to kick life around.  Some days it will be a draw, and some days life is going to kick me up one side and down the other.  Every day I try to put myself into someone else’s life.  Especially when  I am getting knocked down, because I need to remember that no matter how bad I think my life is going, there is someone out there that is looking and me and saying how lucky I am.  I don’t have a monopoly on hard times.  I do have a monopoly on how hard I am willing to look at my own life and decide that I am still very blessed.  Our blessings really are not measured by our bank accounts or the cars we drive.  It is living a simple life  measured by the love we share with others and the number of people we can call friends.  If all of you are any measure then I am truly blessed,

Let tomorrow be your new beginning, by remembering the past, keeping hope in your future, and knowing that there is always an ending.  Most important, live in the present with love on your shoulder and friendship in your heart.  Thanks to all of you for your unending love and support.  

There seems to be a whole lot I can not do for you right now.  I can’t make it all better.  I can’t stand in front of your fear.  I can’t take the weariness from you.  I can’t carry your sorrow.  I can’t always be there to catch all of your tears, but I can give you flowers.

For the last twenty years I never was much of a flower guy.  It was just money I didn’t think I should spend.  They just wither and eventually get tossed.  Just another way of throwing money away.  Sorry, that was the rational me.  I have now come to realize that being rational in an emotional world may be best for some.  I now realize that it is not the best for me.  I now know that there is something far deeper than just something to look at.

The stem is the foundation of us.  The sturdy skeleton that holds us up.  It brings us nourishment and lets us grow.  It holds us up when the wind wants to knock us down, and when times get really tough it lets us bend without breaking.

The leaves gather the light around us.  They nourish our souls.

The flower is our beauty.  It is what everyone sees, but that doesn’t really matter to us.  It is the beauty that we see in each other that is the most important.  It is the vibrance of our lives and the softness or our hearts.  It is our souls molded together into something beautiful, something exquisite just for us.

I give you flowers every week not because it is the most rational thing to do.  I give you flowers because I know that when they show up you know that I am thinking about you.  You know that I love you and that no matter what happens or what we are going through you are the most important thing to me.  I can’t give you a lot of things that you need right now, but I can give you flowers and I love you.

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!!!