One Down, Only 51 To Go

The first treatment at MDAnderson is in the books.

All you prayer warriors came through this week.  We asked for prayers that things would go smooth and the side affects would be minimal.  Well, God answered.

Our “missions” to get to and from the airport with the Ground Angels went seamlessly.  Our first driver, Dick was very experienced and told us only one other driver had more than his 1600+ missions.  He is the retired Dean of Admissions (Emeritus) from Rice University.  He had another pickup at the same time.  She was a young mother of two from Florida with advanced breast cancer.  She had been coming to MDA since 2019 and she jumped in the front seat and they started asking each other about their families and medical condition.  They had developed a true bond over the last 3 years of missions. This was truly more than just a ride.

The next day was my treatment day.  We left the hotel at 7:30 in the morning and got back at 8:00 at night!

We had a few missteps that contributed to that long day and we learned the ropes from some of the other patients who have been coming for a long time.  The day started with a super efficient blood/urine draw.  Then we were able to get something to eat at the cafeteria.  The next appointment was for an EKG, also ruthlessly efficient.

The last step before the infusion was a consultation/examination with Dr. Arvind Dasari, the principle director of the clinical trial.  He was confident, pleasant and gave us plenty of time to ask questions.  We went through my previous CT scan and talked about what the trial hopes to accomplish.  At some point, I mentioned the words “rare cancers” since that is what this trial is targeting.  He told us this, “We don’t have rare cancers here at MDAnderson!”  That line will stick with me the rest of my life.  Have you ever had a doctor with enough confidence to make his patient at ease?  It told me they are not afraid of any cancer.  He also told me that when I am being treated during this trial I will not be seen by anyone that is not specialized with Mesothelioma.  It confirms our belief that God has us at the right place.

We had about :30 minutes until 1:00 pm, our scheduled infusion time.  He suggested we go right now to get in the queue.  Here’s where the unexpected delays began.  What we didn’t know is that even though we were “accepted” into the trial it was not final until that meeting with Dr. Dasari.  So, we sat in the waiting room for at least an hour before I finally asked what the hold up was.  People had been coming in going to their treatment and leaving.  She said, “we are waiting on the final signatures from the doctor.”  When they weren’t there after the second hour I texted Heather, the Research Nurse for the trial (she does all the arrangements and has been a tremendous support to us).  A few minutes later the receptionist told us the final approval was there.  I stood up like I was ready for my infusion and she said, not yet.  I’ll shorten the story by saying we sat there for another 2 hours.  What we didn’t know is that once it is approved only then are the ingredients compiled specifically for my height, weight, age, etc…. So, now we know that all the experienced people check in and then go eat lunch, take a nap, whatever and the desk sends them a text when their cocktail is ready.  Live and learn.  Pretty hard to complain when these folks are helping you kill cancer!

The infusion was a private room where Diane could join me.  It began with another EKG and then a one hour drip.  After that, it was a one hour observation and then another EKG.  The nurses were absolutely amazing and efficient,  

We are now back home in Phoenix and I am happy to report that I have had zero side affects in the last three days.  Praise God!  Thank you for your consistent prayers.

One more tidbit that we found out on Tuesday.  Heather told us that I am the first patient to receive this new Immunotherapy medicine under the clinical trial!  I hope this clinical trial helps a lot of people in the coming years.  

These are the healing gardens directly across from the main entrance at MDA

Diane is fond of telling folks, it’s hard to feel sorry for yourself at MDA.  Everyone you meet has a dramatic battle going on.  We got in the elevator at our hotel and there was a Grandma and her two year old, adorable granddaughter holding her stuffed toy.  We exchanged some pleasantries and the Grandma told us they were going to the hospital to see her parents and her 5 month old sister who is awaiting a liver transplant.

Another observation of mine is the communication provided throughout the hospital.  There are many nice sitting areas as you traverse the many floors and hallways.  At most of them is a television screen broadcasting information about MDA.  The information is interspersed with stories of success.  Most of them go something like this:  “My doctor told me there was nothing more he could do for me but I refused that diagnosis.  So, I came to MDAnderson 21 years ago!”  I plan for that to be my story too!

I think I need a butterfly tattoo!