There's No Place Like Home (Especially When You Can't Get There)

One thing that I neglected to mention in the last chapter was that trial drug injection #1 was not without incident, despite being administered at the #1 cancer treatment facility in the United States.  There was something that I would come to learn quickly, which is that the trial drug had to be formulated onsite by the “investigational pharmacy” because… well… it’s the only place that drug is being given and the short “half-life” in getting it into the patient.  Said another way, there is not enough time to formulate it offsite and get it into the patient before the effectiveness wanes and the drug becomes worthless. 

Even though injection #1 was the “baby” dose and my immune system’s response to it was largely uneventful, the pharmacy was not able to get it to me in time on that first injection day, which meant a day wasted laying in a hospital waiting for something… anything… to happen.  It also pushed out my timeline as far as when I was going to be able to check out of the hospital following the 72 hours of required observation.  The goal posts moved on me by one day, and in the wrong direction.  In hindsight, this was an ominous development that would come to characterize my entire clinical trial experience. 

What this all meant was that I would not be discharged on that first Thursday and would now barely be discharged in time to make a Friday morning consultation with my new doctor, who is also the “Principal Investigator” for the clinical trial.  This was arranged for less than one hour after discharge.  Exhausting.  What is ultimately meant is that we did not have time to get back home for the weekend.  This was the first of many disappointments in that regard.  

Thankfully, MD Anderson does have a very nice hotel onsite that is run by Marriott and is perfectly situated for accessing both sides of what I would call the treatment “campus” there.  That eased the burden (and unexpected expense, accompanied by unwinding all our travel arrangements home) but nonetheless, a nice hotel on the campus of a cancer treatment facility is not home.

There were other things I would come to learn during injection #2.  First, if you are honest about anything that happens to your body while on the trial drug, you get a free scan of some sort!  Stomach bothering you a bit?  Enjoy a complimentary abdominal CT scan, courtesy of the trial sponsor!  Report a minor headache and you might find yourself on the way to a brain MRI.  OK, I get it… gotta rule out that is the trial drug causing it.  

Second (and this happened), no over-the-counter drugs without permission from the trial sponsor.  A simple but persistent case of heartburn one evening left me waiting four hours to receive a Maalox tablet.  And don’t even get me started about the fact that I haven’t been able to have a glass of wine or anything interesting to drink for almost a month now.  Those that know me know that a glass (or two) of Napa Valley Cabernet is part of my prescription for a happy life.    

All of this said, at this point, I was still very grateful to be in a clinical trial, to still “have a shot,” and not be too much worse for wear than not being able to get back to my own bed and my little posse of dogs for the weekend.  But treatment #3 awaits…

Until next time,   

Steve