Kidney infection, infusion #65, CT scans, and NED

In early September, I started feeling lethargic. My appetite declined and I was not sleeping well. I was getting chills, wrapping up in blankets even though it was 80 degrees or warmer. I thought that I might have had a heat stroke from a long motorcycle ride on Thursday Sept. 5, so on Friday I rested, sipped water, and didn’t do much. On Saturday Sept 7 I was feeling a bit better, so after no eating for more than 24 hours I decided to refill my tank at Five Guys. Ominously, I could not finish my burger or even get halfway through my fries. I stared at the uneaten food on the table, never previously having seen such an awful sight. I knew than that my condition was serious, perhaps even terminal.  On Sunday I went into InstaCare, where my temperature was 103.7, my pulse was uneven, and there was blood in my urine. While I was waiting for the doctor’s assessment, I started researching on PubMed the symptoms of kidney cancer, as well as reports of renewed urothelial cancer in neobladders (uncommon, happening in less than 3% of patients). Eventually, the ER doctor came out and said that I probably had a kidney infection and that I should start taking an antibiotic while she ran a culture on my urine. I asked her to also test my urine for urothelial cancer, and she said she had no idea how to order that. The next morning I went down to Huntsman Cancer Center and left a urine sample with them with instructions to do a detailed cytology. Over the next few days I learned that my urine was positive for an e-coli infection in my kidneys, and negative for urothelial cancer. The Cipro has succeeded in knocking down the infection, and a couple of days ago I proved to myself that I had fully recovered by downing my entire Five Guys order.

The days are getting shorter and the leaves are changing. Last weekend the mountains got their first snowfall. The ski areas are scheduled to open in about 60 days. I had hoped that I would be able to get the foundation of my house set before the ground freezes, but that looks unlikely now. The issue with the fire marshall apparently has been resolved after I provided my builder with the laws and regulations that showed he was wrong, but we’re still waiting for the building permit to issue. Plus, the cost estimates to build the house have been much higher than expected. The trades have inflated their prices by up to 25% this year because there is such demand and skilled labor is in short supply. Material prices have been padded due to uncertainty about trade tariffs. I am resigned to the fact that I won’t be able to break ground until spring.

This morning I had another CT scan, followed by labs and Opdivo infusion no. 65. Everything was routine: I drank the barium smoothies on schedule, the tech easily accessed my vein, and I was run through the whole CT enchilada – neck, chest, abdomen and pelvis. Following the tech’s advice to flush the radioactive isotopes out of my system quickly, I went to McDonalds and drank 4 liters of Diet Coke along with a sausage and egg McMuffin or two. I returned for my labs and visit with Lindsay, the nurse practitioner who was covering for Dr. Maughan this morning. She seemed nonplussed by my recent kidney infection and didn’t think that there was any connection between that and my ongoing treatments for metastatic bladder cancer.

My CT scans showed no new metastatic growth in my neck, chest, or abdomen. The cluster of nodes in my neck that were the target of the radiation in June have shrunk a bit, from 13x11 mm to 11x6 mm. Nothing lit up in the scans, so there is "no evidence of pathologic lymphadenopathy."  NED (no evidence of disease) is a good place to be. It's been a year and a half since I've had such a clean scan. I hope there will be many more.

As I sat in the infusion chair and had the nivolumab pushed into my vein, I looked around at so many other patients who were getting chemotherapy or immunotherapy. Many seemed apprehensive, accompanied by family members who were uncertain how to act. I thought back to those times I was in that position – my first GemCis chemo in 2012; my dose dense MVAC chemo in 2013; and the first few infusions of nivolumab in early 2015 -- and am glad that they are in the past. I feel fortunate that I can see my infusions as routine: an ongoing prophylaxis against a chronic disease. As the events earlier this month reminded me, I am always one event away from being confronted with renewed metastatic growth that plunges me into uncertain treatment options with a low likelihood of success. But I don’t live my life worrying about such eventualities. I live each day as best I can, grateful to God when I lay down to sleep, grateful when I awake.

For there is much to be grateful for. This coming week I will officiate the wedding of my daughter Kirsten, and her fiance Jason – a rare honor and opportunity. I have been closely studying great examples of wedding officiants, including Peter Cook and Rowan Atkinson, and diligently preparing for a once in a lifetime opportunity.