My 4-Year Stage 4 “Cancerversary”

This is a guest post by Joel Stern, stage 4 kidney cancer, member of the KCA’s Board of Directors.

Saturday November 16, 2024 was a huge day for me. I celebrated my 4th year “cancerversary” with Stage 4 clear cell renal cell carcinoma (RCC). Many celebrate this anniversary. Some consider it a “dark” day they would rather ignore. I choose to celebrate for more reasons than even I can enumerate in a post. But I will try! (Did anyone really doubt that?!)

First, with my disease, the percentage of living five years or more is not great despite recent medical advances. I have a year to go to beat those odds, but when first diagnosed, I wasn’t certain I’d make it to the end of the year. Friends and family created a video for me including famous athletes and actors urging me to fight on. I’m certain, in their mind, I wouldn’t be here watching it today, but I did. And, I admit I cried. (Yes, real men do cry!)

Second, I’ve learned a lot about me through this journey. I’m stronger than I thought. I no longer have a phobia about my demise nor does Stage 4 RCC consume me. I take nothing for granted. I appreciate all the friendships I have had for years, and the many new friendships I’ve made. I have made amends with those I had petty disagreements with. I am less hyper and more patient than before (at least in my humble opinion). I wake up every morning thanking God I’m here.

Third, I have found quality of life for most of my four years, despite having three bouts of progression, three separate radiation treatments, one CT RF ablation, cement poured into my pelvis, and my kidney removed. I appreciate I am more fortunate than many who are dealing with much worse. Stage 4 RCC is ugly. Most of us live three months to three months waiting for our next scans. Scanxiety is real and affects not only us, but our loved ones. All of us suffering from this disease are and will remain heroes to me.

While I have found quality of life, I’ve also endured weeks when it was hard to acknowledge quality of life due to either physical pain, progression, too many pain meds, or sadness/depression. I will always live with chronic pain from damage to my Iliac and my bones. I’ve learned that you don’t measure “quality of life” in short bursts of time. You measure it over months and if fortunate, you will find it.

I do suffer from “survivor’s guilt.” I wonder why so many beautiful souls have passed and I’m still here. When I see a young person die of this disease, the toll it takes is real but pales in comparison to what families go through. When I see others suffer much more than I have, it hurts. I admit I wonder why, but I can’t let the guilt consume me. Nor am I jealous when someone finds out they have No Evidence Of Disease or has durable remission for years. They inspire me. They give me and hopefully all of us hope. They did it – why can’t we! Sharing positivity not only among those of us with RCC but with friends and family is important.

Fourth, I have been given the opportunity to give back these past four years. RCC advocacy takes up a lot of my time, but I love it and hope it is making a difference. These activities are cathartic for me and necessary for me to have a “purpose.” When I retired from the legal profession, I feared becoming “irrelevant.” With this disease, I have found a way to stay relevant and not disappear into the horizon. It’s another chapter in my life that I hope is not only long, but productive.

Fifth, I have made lasting memories these past years. I haven’t wasted a day when feeling good. I continue to play tennis (not as good as before), I play golf (as bad as I played before), I’ve vacationed with Donna, family, and friends. I’ve experienced my first Super Bowl, NCCA Final Football championship, and NCCA Final Four basketball. And, I plan on attending Wimbledon for the first time in 2025.

Finally, and most importantly, I am enjoying my family that now includes my three grandsons: Aidan (6), Ollie (3) and Lucas (2). I have two married daughters (Brittany and Amanda) who make me proud every day. I have two great sons-in law and who knows, maybe a third in a year or two. Donna and I have spent a lot of time together. I feel extremely fortunate to have Team Stern in my corner that not only includes my beautiful family, but my friends, and my RCC Community, who mean the world to me.

Stage 4 is not a death sentence. No one knows when it’s our time. Patients are living longer, medical advances are happening every day, RCC expertise among our medical groups is improving, and communities like this are helping educate our group and providing comfort, compassion, kindness and useful information. We refuse to be a number. We ask “why not me” versus “what if?” We fight hard every day. We get hit and knocked down, but we get back up and win the next round. We are all pretty darn amazing!

There is no magic recipe for success in battling our disease. It takes a great medical team, an excellent support network, an understanding that “knowledge is power,” faith, if that’s your thing, positive energy, and a little bit of luck. Additionally, it takes a positive attitude and most importantly HOPE.

November 16th is a great day for me.