So I figured it's time to update this. Unfortunately, this isn't going to be the most positive update I've provided.
First, Monday was the 3 year anniversary of my wife's passing. Like all the milestone dates (birthday's, anniversaries, etc.) it was a very emotional day.
My son is doing okay. He now has an insulin pump and a continuous glucose monitor for his diabetes (type 1). He still needs to do a better job of managing it. He was having a lot of low sugars, including one where he passed at at work and was taken to the ER by ambulance. That incident scared him. As a result of that, his Cardiologist pressed him hard to consider the placement of an implantable cardioverter defibrillator. One of the first signs of low blood sugar is a rapid heart beat, but the beta blocker he is on for his LQTS mutes that symptom. She wanted the ICD so he could come off the beta blocker. That surgery is scheduled for August 14th.
I had a follow up doctors appointment with my oncologist on Friday. He said the most recent CT scan of the chest showed a new 5mm spot in the lung that wasn't there on the CT scan in November and PET scan done in February. Both the oncologist and radiologist that read the scan feel it's the Renal Cell Carcinoma metastasizing in the lung (one of the location kidney spreads to along with the thyroid and liver). The spot is to small for a biopsy, but based upon the size and grade of my tumor (Stage 3 Grade 3 with infiltration in the the IVC) re-occurance was very likely.
I have the option of starting treatment now, or waiting. The treatment consists of a combination drug therapy of a chemo pill (Inlyta) twice a day and immunotherapy infusions (Keytruda) every three weeks. After talking to my wife's cousin who is a doctor, I decided to start the treatment sooner rather than later. I'll probably start the treatment in early August to work around my son's surgery and a scheduled vacation him and I are taking August 18-23 (driving trip to Washington, Pittsburgh, Cincinnati, Chicago, Cleveland and Baltimore for baseball games).
Other than the fact that I have, most likely, metastatic renal cell carcinoma growing in my lung, I feel pretty good physically. Emotionally I'm kind of a wreck, but I'll weather the storm because I have no choice.