CR Day 107: 16th Opdivo infusion; goodbye Xarelto

As usual, the day before my scheduled infusion, I went to the local Labcorp office for a blood draw. Theoretically, having the draw the day before should ensure that my lab work is in place so the Hopkins pharmacy can custom-make my dosage of nivolumab, which otherwise takes at least three hours to compound. Yesterday, however, the Labcorp tech failed to draw enough blood to do the CBC work. This meant that Hopkins had to do my blood work and I got to wait.

Dr. Hahn and I discussed whether I could discontinue Xarelto. It's been exactly a year since my pulmonary embolisms were serendipitously discovered at NIH when I was being evaluated for a clinical trial. There has been no evidence of further PE's in my last eight CT scans. My body is not currently burdened by any metastatic cancer, thereby decreasing the risk for PE recurrence. Dr. Hahn was comfortable with my stopping Xarelto, saying that the risks of DVT or PE were much lower. Plus, I'll be having regular CT scans for at least the next two years through the clinical trial, so the risk of having an undetected recurrence is virtually nil.

Three hours later, my drug was released and I had my sixteenth infusion. I get my infusions sitting next to patients getting chemotherapy, and as I looked at the bald heads and gaunt frames, it seemed like a lifetime ago that I was one of those patients. In fact, it was only two years ago that I was suffering through ddMVAC. I hope that immunotherapy will replace chemotherapy, that the success rate will rise, the side effects will diminish, and more lives will be spared.

At least once a week, I review recent questions regarding bladder cancer at www.inspire.com and post responses. I focus on metastatic disease, where I have the most personal knowledge. I also have engaged in a number of one-on-one discussions with patients or their caregivers, and will on occasion point people to my prior blog entries where I have addressed the topic of their question. I also have been told by a number of patients that they have investigated and enrolled in immunotherapy clinical trials after reading of my good fortune. I'm grateful that others have been helped through my chronicles. When I started this blog, I had no idea what it would turn into. And I have no idea how long it will go.

Thirty six years ago, Dan Fogelberg released an album entitled Phoenix. The last song on the flip side of the record was titled, Along The Road. Recently I've thought about those lyrics in light of my journey with bladder cancer:

Joy at the start, fear in the journey
Joy in the coming home
A part of the heart gets lost in the learning
Somewhere along the road

Along the road your path may wander
A pilgrim's faith may fail
Absence makes the heart grow stronger
Darkness obscures the trail

Cursing the quest, courting disaster
Measureless nights forebode
Moments of rest, glimpses of laughter
Are treasured along the road

Along the road your steps may stumble
Your thoughts may start to stray
But through it all a heart held humble
Levels and lights your way

Dan Fogelberg died of metastatic prostate cancer in 2007, at age 56.

As for me, I can't say that my journey with bladder cancer started with joy, and certainly there has been fear along the way. But I have found many unexpected joys, and look forward to many more moments of rest and glimpses of laughter somewhere along the road.