Ammonia

A long time has passed since my last post, so I want to bring you up to date on my treatments and my condition.  I continue to receive infusions on the same 3-week cycle with the clinical trial at Emory Winship Cancer Institute.  Scans and MRIs have been stable so we know that the drugs are working and the cancer is not spreading.  I am still experiencing some side effects – fatigue, dry mouth, mouth sores, digestive problems, lack of balance, and some forgetfulness and confusion.

A few weeks ago the confusion intensified rather suddenly, so much that Cheryl and the family were alarmed.  We could not see that anything had changed that could have caused this to happen. Our family doctor ordered a lot of blood work and tests to be done, but nothing showed up to solve the mystery. 

A retired physician friend who has been following the results of these tests suggested that an elevated level of ammonia in the blood could cause confusion and disorientation.  So – another blood test and an ultrasound of my liver, and finally we had an answer.  Medication was prescribed and I started drinking this very unpleasant thick sweet syrup on Friday night two weeks ago.

The following Tuesday, August 12, we went to Emory in Atlanta for my scheduled infusion. My bloodwork showed that the level of ammonia had risen since the previous test, and they decided to admit me to the hospital. The infusion was cancelled for that day.

 By Friday I had been examined and evaluated by numerous physicians, scanned and x-rayed and poked every few hours for more blood to be tested.  They ruled out a lot of things, adjusted some of my medication, prescribed new medication, and reduced the ammonia in my blood to within the normal range.  I was discharged late Friday evening. I am feeling better and my mind is much clearer.

Along with my medications I will continue taking that awful syrup until my ammonia level is stable in the normal range. We will follow up with our Gastroenterologist here in Rome next week.

The plan is to continue the infusions as scheduled, so we will go back to Emory on September 3 for treatment #12.

We are paying special attention to my swallowing abilities as I am easily choked on many different kinds of food. I certainly don’t want to be fed through a stomach peg, but it looks like part of my future.

During this period of silence from me, many of you guys continued to pray for me. I felt the energy of those prayers, and I am grateful that those prayers were lifted to our Heavenly Father.

I promise to be more regular with these epistles as my health allows.