I suppose the best way to start this piece is by typing the words “I am okay.”
Clear cell Renal Cell Carcinoma (ccRCC)
In early April, I learned via MyChart that the mass that was removed from my right kidney was clear cell Renal Cell Carcinoma (ccRCC). It took about two more weeks for my doctor to contact me (due to a minor clerical error), and two days before my 50th birthday, I received the welcome news that my prognosis is very good. In fact, it is so good that no further treatment is recommended at this time. I just need to get scans every six months for a few years and then every so often for the rest of my life. It’s a best-case scenario at this point. The cancer was not found anywhere else in my body, including my vena cava, surrounding tissue, and my bones from head to toe. The doc did tell me there is a chance it may come back, and that’s why they will check for it regularly, with the plan being to intervene as quickly as possible if it is found again.
Right here, I should say that my original intent was to try and chronicle my experiences from start to finish after the mass was first discovered. I have been writing for most of my life for one reason or another, sometimes as a paid gig and other times for my own recreation and enjoyment. But things quickly became overwhelming and instead of being therapeutic, writing about what I was experiencing was overwhelming and something that I just couldn’t bear. I needed to get to better times before I could appropriately thoughtfully express myself. Those times are here now.
The Da Vinci surgery system.
So, I am very grateful for so much – from the family and friends who supported me through the worst of my anxiety and uncertainty to the Da Vinci robot system that the urologist-oncologist used to extract the mass and my kidney. I am perhaps most thankful to my primary doctor, who took my concerns seriously. In fact, I went in to see him in early March thinking that I had a hernia, thinking I had reopened a previous incision from the gallbladder surgery I had 20 years ago. But I was also having back pain and side pain and, while he conceded that a hernia was possible, he was alarmed at the level and extent of the pain I was experiencing. So I guess I am especially grateful that he took my pain seriously and didn’t just wave it off. Within a few days, I had my first CT scan and following the revelations from that, things moved even more quickly. In less than three weeks’ time, I found myself in a hospital bed recovering from a radical right nephrectomy. I’m fortunate at how quickly things worked out for me, as I know it doesn’t work nearly as well for many people, even in the United States. Maybe especially in the United States.
The four stages of kidney cancer
It’s hard not to ruminate a little on some missed opportunities over the last four to five years, though. I started seeing a hematologist around five years before all this started because my blood platelets were abnormally high. As my platelets climbed from year to year, I expressed more than once that I was concerned because I had read this was a possible indication of cancer. Every time I brought this up, she just waved me off and said that I was young and in relatively good health and she’d tell me how her father had high platelets. The plan was to put me on meds once my platelets hit 750k, but when I hit that level, she decided to wait. On the day of my surgery, my platelets hit 1 million, A week after, they dropped to 900k and a few weeks later, they were at 864k. Just about everyone thinks there’s a correlation – except for my hematologist, who still maintains that my high platelets are due to a genetic mutation (CALR). The last time I saw her, she seemed genuinely surprised – stunned really – that I apparently had cancer the whole time I have been seeing her. She is a medical oncologist.
I also recall that in the early days of the pandemic, I received some test results in the mail that indicated my kidney function was problematic. I remember driving to an early morning doctor’s appointment at my former primary doctor’s office and listening to news reports on the radio about how everything was closing down. It sounded like the end of the world. Once I was there, I talked with a doc who was standing in for my regular physician. He reviewed the results with me and again, he basically weighed them off. His explanation was that the results were from an early morning fasting test and that I was probably dehydrated. He might have been right, it’s still apparent in hindsight that there was definitely something wrong with one of my kidneys. It seems like another missed opportunity, all told.
One of my biggest lessons from all this is that I need to be a better advocate for myself. Had I pushed a little harder here or there, it’s entirely possible that the cancer would have been found earlier and maybe I wouldn’t have lost an entire kidney. Maybe I could have kept almost all of the right kidney if things had gone differently in the very beginning. Maybe I could have avoided all of the terror and anxiety I went through when a softball-sized mass had overrun an entire organ. But the biggest lesson by far has been to be grateful for what I have at this point in my life. Most importantly: I am alive, and, once more, I am okay.
“
The Orange File” is an irregular series of blog posts through which I will chronicle some of my experiences dealing with a potentially serious kidney issue.
