Richard Thoma

Tuesday, September 12th, 2023.  

3:40 CST

A day I will never forget.  I was in Houston for work, about 20 minutes away from my next meeting, when I got the call from my Primary Care Physician’s office asking if I was someplace safe.  I immediately knew I was not going to get great news.  I pulled over in a Starbucks parking lot and conferenced with my fiancée, Ashley, to hear the news that I had Pseudomyxoma Peritonei, a rare disease that my primary could barely articulate.  The conversation lasted about 20 minutes, but from the first minute onward I couldn’t process information.  You do not expect to be 29 years old and told you have stage IV cancer.  I immediately booked a flight back to Phoenix and headed straight to the airport.

Taking it back a few months, I never would have seen that call on September 12th coming.  Sure, I had a few symptoms.  I was bloated and fatigued, but I was also getting older.  I started noticing some of the bloat and fatigue around April but just chalked it up to lifestyle.  I entertained a lot for work, meaning steak dinners and late nights.  I was convinced if I cleaned up my diet a bit, my symptoms would resolve themselves.  After I cleaned up my diet and the symptoms would not resolve, I started working with my primary in July.  We started doing imaging and the ultrasound showed the presence of fluid in the abdomen, I rushed to get a CT that same day.  The CT is what ultimately confirmed our diagnosis. 

 

 

From September 12th onward, we pushed to overdrive.  My wonderful fiancé, now wife, Ashley took the bull by the horns and developed a strong path forward.  Ashley immediately got in touch with the Appendix Cancer PMP (ACPMP) Research Foundation and started discussing how to best approach this rare cancer.  The ACPMP team gave Ashley and me tremendous support, suggestions on specialists, and what the path forward looked like.

After consultation with the ACPMP and a local surgical oncologist, we decided to see Dr. Patrick Wagner at Allegheny Health Network in Pittsburgh.  We met with multiple specialists across the country, but Dr. Wagner stood out.  He was willing to be aggressive, and confident in his ability to help treat my cancer.  We were fortunately able to get in for surgery in Pittsburgh on October 26th.  

Nothing can effectively prepare someone for the CRS/HIPEC procedure.  By the time you read this, you’ve probably read a few pieces on CRS/HIPEC, but in reality, the only way to prepare is to experience the surgery.  My surgery lasted about 12 hours, and I left without my spleen, gallbladder, appendix, and portions of my stomach, colon, and rectum.  But fortunately, I left with no visible evidence of disease!  I started out as a 39/39 on the PCI scoring, so to remove it all was a tremendous accomplishment and a testament to the skill of Dr. Wagner and his team.

 

Recovery-wise, I am writing this about 8 weeks out from surgery.  The first four weeks were particularly challenging for me.  I was discharged from the hospital 8 days after surgery, but 2 days after discharge bounced back with an infection.  They found a hole in my stomach that was leaking fluid into the cavity my spleen formerly occupied.  I had to get a new g-tube and JP drain put in and left the hospital 9 days later on TPN (IV Nutrition).  As I write this, I am tapering off TPN and eating regular food, but I spent Thanksgiving on a liquid-only diet, which is a punishment I wouldn’t wish on my worst enemy.  At about the 6-week mark, I started feeling stronger.  I am not 100% by any stretch, but I can feel my energy bounce back.  I cannot say each day is better than the last, but each week is better than the week before.  Recovery in the moment felt so far away, but now it seems closer than ever.

I am not out of the woods just yet.  I will have to get regular CT scans for presumably the rest of my life, and statistically starting with a PCI score of 39 will end up with another CRS/HIPEC surgery in the future.  However, with a wonderful partner in Ashley and the knowledge of the Appendix Cancer PMP Research Foundation, I am confident I have a strong path forward towards a long, productive future.  

If anyone was recently diagnosed and would like to connect, please feel free to call or text at 262-305-7511