Let’s Get Back On The Horse

That has never be more true in our family.

People frequently ask me how my sister, Melissa is doing.  Well, thank you for asking.  She is literally “back on the horse!”  

My Superstar sister has navigated her Off Script experience in life changing ways.  Her near death episode put Garn Walker Stables on a brief hold while Garn and Melissa cautiously nursed Melissa back to good health.  They work so hard together to show their client’s horses around the country.  

Melissa was very diligent at following her doctor’s post surgery recovery instructions.  All the while planning to return to her world-class riding form.  Once the doctor cleared her for driving cars and riding horses she had very little time to prep and train for their recent show.

Here’s all you need to know:

June 30th: She went from this.  Yes, that is the actual drill they used to relieve the pressure on her brain!

August 30th: To this!  The Jubilee Morgan Regionals Championships in Springfield IL.

There’s even better news.  The Good News of the Gospel. Melissa has a unique new perspective.  She appreciates life in a new way.  She knows she is still with us because God loves her and she now shares her story of survival.  There is more work for her to do on this planet.  She even sends me Jesus memes! 

Joel’s  Update: 

Rachel’s husband Joel is also gaining strength following his “Off Script” accident earlier this year.  He and Rachel are working hard to adjust to their new normal.  They’ve been working on the house and making the best of their situation.  Joel is very anxious to get back to work and he’s planning on pursuing a new trade.  He is a very talented, creative young man.  He loves designing and creating projects so he has enrolled in a Computer Aided Design (CAD) course to begin in the new year.  His body is healing well and he will likely “get back on his horse”, the pedicab, as soon as he is able.   

Our Amazing Medical Journey:

Recently, I received an unexpected letter from Tango Therapeutics, the maker of TNG-462, which is the working name of my clinical trial drug.

Here is a copy of the letter:

My doctor thought this was an unusual request from a sponsoring drug company, considering the privacy issues with clinical trials.  However, he said I was welcome to respond if I desired.  So, here is my response to Tango:

To The Employees of Tango Therapeutics:

I am fortunate to be on the clinical trial for TNG-462.  I want you to know how the important work you do developing medicines is affecting this patient’s life.  First, a little background for you:

My wife and I are retired snowbirds.  Our primary residence is in Alaska and we winter in Arizona.  I began to have intestinal problems in 2021 and was finally diagnosed with Peritoneal Mesothelioma 4 months later in 2022.  This cancer is rare enough that most doctors have never seen a Mesothelioma patient.  Initially, I went through the standard treatments for Mesothelioma; including three rounds of chemotherapy and HIPEC surgery.  Both had only limited success. For that reason we reached out to MDAnderson in Houston for clinical trials.  I had much better success with the first two trials I participated in at MDA however, both trials eventually failed.  

In true MDA fashion they always have a backup plan.  In the middle of my second trial I saw a new doctor during one of my treatments and after looking through my chart he suggested I pre-screen for a few other trials.  At that time, things were going well and I joked that they wanted me to cheat on my girlfriend!  But I thank God for that insight.  Because when that trial began to fail a few months later, I was offered a chance to participate in TNG-462.

I have been having amazing results with this new medicine that your team is developing. I began the trial in late January 2024.  I am truly humbled by the ease of treatment with this Targeted Therapy.  In the first 4 months my tumors have reduced by 51% in size!  I have had no outward side effects.  I may have an occasional blood indicator out of range but in general my bloodwork is exceptional.  I am also fortunate to not experience any real cancer symptoms.  I  have no fatigue, pain, or appetite issues.  In addition, I am still playing high level Senior Softball and we regularly play competitive pickleball.  For the most part we are leading normal lives.  

My wife and I are lifted daily by our faith in God.  It’s been said that when one door closes God opens another door.  For us, He found Tango.  

A pet peeve of mine is when I discuss my cancer with someone and they have the audacity to tell me their conspiracy theory, that the medical industry has a cure for cancer but won’t reveal it because they want to continue to make money through excessive treatment.  If they’ve been through what we’ve experienced they would never think that again.  We pray regularly for the doctors, researchers, clinicians, and yes, the developers of the cutting edge medicines that are extending lives and improving patient’s quality of life.  Being in a clinical trial offers us an insight into the dedication and drive displayed by the medical team hoping to one day cure all cancers.

Cancer treatments have come a long way in just 20 years.  A Mesothelioma diagnosis used to come attached with an 18-24 months life expectancy.  Today, thanks to companies like Tango Therapeutics, many cancer patients are having long remissions. I plan to be one of those patients and I would love to attend the Nobel Peace Prize ceremony when there is a cure for Cancer!

We tell everyone, “we are living with cancer.”  

A heartfelt thank you to all the employees of Tango Therapeutics.  We are grateful for your efforts.

Cycle 8, Day 1

On my most recent treatment at MDAnderson Dr, Yap had not yet arrived when the nurse called me in for vitals.  I made a comment that he sure keeps a nice schedule and my nurse, in an effort to tell me how revered he is in the department, revealed, “around here we call him ‘the Taylor Swift of oncology”.  I laughed and asked, “can I use that line?”   She said, “sure.”

My usual treatments go something like this: We are called in for vitals, then escorted to an available room to wait.  While I am looking at my phone I’m receiving a series of texts from the blood lab as my results are available.  Then begins a number of visits from nurses and a Physician’s Assistant who each go over the bloodwork, any issues I need to report, and every other visit we review the results of the CT scan from the day before.  

So, when Dr. Yap finally entered the room this last visit the first thing he said was, “there’s our Superstar!”  I responded, “well, if it isn’t the Taylor Swift of oncology!”  

We love when he has good news.  He showed us a matrix of changes from scan to scan and revealed that one of the measurable tumors was now at 81% reduction since January.  He was full of good news.  He also said the trial has completed Phase 1 and is moving to Phase 2.  Phase 1 used a limited number of participants to determine the dosage a human should take.  Phase 2 will now begin recruiting for more participants around the world to a total of 149.  

Trusting the Medical Community 

I understand there is much consternation about the medical industry these days.  Much of the problem revolves around politics, insurance companies, pharmaceutical companies, and really, the fact that the industry is a business.  I don’t have any concrete solutions, but I do have experience as a patient.  My treatment revolves around very caring, selfless hospital staff, nurses, doctors, pharmacists, radiologists, and yes, the pharmaceutical side of things.  

Even though the critical cry is, “follow the money” the reality is doctors are real people with real commitment to finding cures and saving lives.  They are regular people with a sense of humor, compassion and respect.  They also bring a wide range of personalities to your situation. Remember, doctors take an oath to do no harm.  Not unlike the members of our military who take an oath to protect our nation.  

I frequently talk about how MDAnderson doctors look at your treatment unlike any other doctor I’ve experienced.  And, when you have “bad news” they seem to know just the right words to say.  Here’s an example:  Our friend Carol was interested in a second opinion regarding the direction her treatment for breast cancer was headed.  With the blessing of her current doctor she made an appointment with MDAnderson to find out if there were any advanced therapies that she should consider.  After several days of evaluating her treatment to date, she was ready for her second opinion.  The doctors at MDA told her, “Carol, you are a healthy person, living with cancer.”  What a relief for her to know that she is in good hands with her current doctors and she is being treated the same way MDAnderson would treat her.

To me that doesn’t sound like a money hungry element of the Medical industry.  That is truth and compassion.

Then you will know the truth and the truth will set you free.

Romans 8:32

Thank you again for following this blog and praying for our journey.  I am a healthy person, living with cancer!