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This is a guest post by Joel Stern, who was diagnosed with stage IV renal cell carcinoma in 2020.


It’s been a year since I wrote about my journey with Stage IV renal cell carcinoma where I tried (emphasis on “tried”) to convince all of you (as well as me) that despite my dire diagnosis with this disease, I was surprisingly content.

When I decided to inflict pain on all of you and request that you read my tome, I didn’t think I’d be here a year later.  I wasn’t certain I’d make it past Christmas of 2021. But here I am a year later and who knows, maybe I’ll be here years from now and achieve my goal of hitting 100. As I said before, I’m the same as you. Our deaths are inevitable, but no one knows when it is our time. Like you, I’m hopeful I have many years left to enjoy everything life has to offer me.

As I sit down and document my second year to give you something to take with your nightime Ambien, I am trying to come up with a catchy title for my year in review and the only thing that comes to mind is: “I have Stage IV Renal Cell Carcinoma and I’m Surprisingly Content (And This Time I Really Mean It)”. Okay, slam the lack of originality of the title but please don’t slay the author.

So why the scintillating title? Because I not only write to inspire others with this and other serious diseases with no cure, but to push myself to keep a positive attitude. And the more I repeat that I’m content (OCD if you prefer), the more I put myself in a corner where I better be content or I’m a hypocrite to my family, friends and sleep seeking audience. (I know, all the psychiatrists out there are going to have fun with me on this one but go ahead.)

And you know what, ever since I documented my first year with this disease and as I now write about my second year, I am content. I am purposeful. I am hopeful. I am optimistic. I am also intellectually honest (maybe aspirational on this one), and I am a strong Warrior battling the cancer demons with an incredible network of family and friends behind me. Of course, I have those few moments where I bathe in self-pity and fears of dying tomorrow, but they don’t overwhelm me or define me, nor do they take away from my overall self-contentment. That’s progress, folks!

THE SECOND YEAR

The Bucket List

One of the best things I did at the end of my first year with this journey is create a “bucket list.” I found that by documenting my “wish list” of fun things to do, I became more inspired and set on doing them. For me, dreaming of each item on that list provided me with joy during the anticipatory stage leading up to the event, provided me with loads of fun and enjoyment during the event, and cemented memories for me and others after the event which continue to last to this day.  Bucket lists are not just for those of us who have cancer, the healthy should create similar lists so they ensure they are accomplishing what they want both big and small.

My Family – My Reason to Fight

My wife Donna and I continue to enjoy retirement and find that we spend more quality time with each other than ever before. I am blessed to have three daughters who live within ten minutes away from our home. I spend so much quality time with my two grandsons: Aidan and Oliver. Later this month, we will be welcoming Lucas to our family – Brittany and Ben’s first child.  I have spent so much time with the best family I could ever hope for and just loving my two grandchildren every time I see them. I never thought helping to raise my grandchildren would give me the same thrill as raising my daughters, but it does, and I now have more time to be with them. I treasure every moment with Donna, Brittany, Amanda, Taylor, Ben, Jason, Aidan, Oliver and now Lucas. I also spent time with my dad and his wife Nora this past year and treasure those moments. I hope to see my brother Eric and his family in 2023. This is my reason to live. This is why I fight. Nothing on my bucket list means more to me than being with family. They are my legacy.

I spent time with friends and loved ones including my very good friends Sarah and Des from Michigan who made a visit to Chicago with their kids and visited my family this Spring. I hope to visit my Michigan friends in November and see a Michigan football game.

Sports, Anyone?

I am a sports fanatic and I participated in several sports activities this past year starting with the Super Bowl in February. I had never been to a Super Bowl and wanted to go. At the time, my good friend David and I got tickets months earlier, I had dreams of my beloved Browns getting into the Super Bowl. Well, I was close (not really) – the Cincinnati Bengals (that other Ohio team) played against the LA Rams. The four days in LA was so much fun.  All I wanted to see was a game that went into the last minute and that’s exactly what happened. And I bet on the Rams a month before the big game to win the Super Bowl and then the day before I took Cincy with four and a half points. If you are a better, you know that I won on both bets so that was the ice cream on the cake. We also went to the NFL experience where I successfully threw a 35-yard football into the net. I have that on videotape for you doubters. We had such a great time that we are planning on going to the NCAA College Football Championship game in January in Los Angeles. Thank you, David for planning a yearly sports spectator event each year that doesn’t include the “other” football sport. While I know you are having fun, I also know you are doing this for me.

Speaking of sports, I saw my Browns destroy the Bears with my best Cleveland friend Jim, went to a few minor league baseball games (Chicago Cubs) and even went to Fenway Park in Boston with Donna and our good friends Sharron and George. Earlier this year, I went to the Miami Tennis Open with my friend Nelson, who still has visions of beating me in tennis, but that will never ever happen, Nelson, despite your pipedreams to the contrary.

I also wanted to get back to playing tennis like I played before my disease, and more often than two hours a month. Well, I have been playing one to two times a week and my game is almost at the level before my cancer. It gives me such joy to play with my friends (especially my Sunday morning gang at Northbrook Tennis Club) and while in a lot of pain during and after I play, it’s worth it. I have also played more golf this summer than ever before but still shoot closer to my IQ than par golf. I was kind of hoping my cancer would affect my golf swing….in a positive way. No such luck.   I played golf in a cancer charity event hosted by one of my fellow warriors Carie in Grand Rapids Michigan with some friends.  We didn’t win but we did fudge the score a bit so we would finish in the middle of the pack. Probably no coincidence that the fudging occurred promptly after reading Commander in Cheat by Rick Reilly. Donna and I bought a Peloton treadmill last Christmas and I love it. Not breaking any records in speed walking but am getting the exercise I need to continue fighting the disease.

Finally, I play in a fantasy football league with my sons in law Jason and Ben. I have already won the tournament once (yes, I am bragging) and was all set to win the league again in 2021 until Baker Mayfield threw an interception on the last play of the Pittsburgh game which subtracted three points from my score, and I lost by a point. If Baker had just tripped over his feet and fell, I would have won. And now you know why Baker was traded to Carolina. Enjoy him! (And no, I am not getting into Browns’ quarterback discussion today.)

Vacations – Experiences are better than objects

Donna and I have taken a few trips to Florida with and without family and I went to the Miami Open with my friend Nelson – remember, he’s the one who is envious of my tennis prowess. I also went to Naples to play golf for three days with my good friends Mark and Chicago Jim.  Donna and I did a repeat of our Alaskan cruise we took three years ago, and it was as good as the first time despite having to not only dodge glaciers but COVID and now Monkey Pox – what the heck?  The good news is we avoided all three; the bad news is we both tested positive for COVID the week we got home. On the Alaska trip, we went on my first seaplane, went canoeing close to glaciers, enjoyed nature at its best and even had a glamour shot of us that somehow Donna liked, and it’s framed in our house (probably the most improbable event that occurred these past twelve months). Donna thought we were going to relax and take it easy this time around, but we didn’t – and we had so much fun.  Donna even won Bingo this time. (Note last time we went, she called out Bingo in front of 300 people and, she didn’t have it.)   We also went to Boston with our friends George and Sharron and bathed in lobster and cannoli and made a trip to Salem where we visited Samantha Stevens (who figured?).   The entire family is going to Marco Island next month, and we have a Disney trip planned in 2023. Don’t tell Donna but I have already booked another cruise next October.  Thank you, Bucket List!

Concerts, Movies, and Books

Donna and I saw the Eagles play in Chicago (fantastic) and Genesis (so so) and am seeing Springsteen in Cleveland in April 2023 with Cleveland Jim. Jim and I saw Springsteen the first time in 1974 so this is a long overdue reunion.

Donna and I see a movie once a week – typically Tuesday at 1:00pm which has become a retirement ritual. We also binge watch way too many television shows.  I am also a voracious reader and have read some interesting books this past year both fiction and non-fiction. Reading is a great time sucker when you are up at 2:00am every night. For my sanity, I try to limit myself to no more than an hour of news a day, but I fail miserably.

It’s Time to Give Back

My passion for diversity, equity and inclusion continues.  I spoke at an Empowered Women’s Conference that my friend Susan organized. At that conference, I told the audience that when I got my diagnosis, for the first time in my life, I felt disempowered and while I will never compare that to the disempowerment that women, minorities, and the LGBTQ plus community has been dealing with forever, some of the steps I took to become more empowered are relevant to the daily battles they face. It was an interesting comparison, but I hope helpful to the audience.    I have given several Diversity, Equity, and Inclusion presentations and help review scholarship applications that both BSP Law and NAMWOLF have created in my name. (It’s humbling having scholarships named after you when you are still alive to enjoy. Just a bit harder to get my big head through the door.)  I mentor several younger attorneys (primarily diverse attorneys) to help them achieve their career and life goals and offer my old man’s guidance to anyone who listens.

With respect to kidney cancer, I was invited to join the Kidney Cancer Association’s Finance Committee as a volunteer advisor. And thanks to many of you, I won the KCA’s $79K challenge raising more than $24K to help with clinical trials. (Yes, I am that competitive that I had to win that challenge even if the prize was a huge bright orange suitcase that will remain in our basement forever.) I hosted a Stage IV RCC Warrior dinner in Chicago with over 56 patients and caregivers where we celebrated our lives versus commiserate about our disease. It was so successful that others are planning similar events around the country in 2023. I also am mentoring patients and caregivers trying to get them to find contentment despite this disease. I have been published and interviewed several times; I am co-emceeing a Kidney Cancer Symposium in November that the Judy Nicholson Kidney Cancer Association is holding in Atlanta. I am on a team working for the federal government to review kidney cancer grant applications and am getting more involved with other kidney cancer organizations.

Warrior Dinner in Chicago

I remain a very active participant on my favorite private Face Book site – Patients (Warriors) Living with Stage IV RCC and every Friday I write a Thankful Friday post trying to inspire others to keep fighting this disease and find joy in life.  This site remains an incredible place for over 2000 Warriors (including caregivers) to share with, learn from and comfort each other. They are my family who I respect and love, even though I will never meet most of them.

I continue to focus on my legacy and want my family and friends to be proud of the way I am facing these challenges. This is my new norm, and I am embracing it.

Medical Update

On the medical side, the year has mostly been good. The pain is constant but manageable. Same for the side effects from immunotherapy. Fatigue and hip pain are my major complaints. Scans have been stable until very recently when tests show that my kidney tumor is growing. However, the bone cancer seems under control, which is great. I always said that when anything changes, I will get a second opinion so when my fantastic oncology team at Northwestern recommended a change in treatment, I decided to see one of the best of the best at University of Texas, Southwest. He is an RCC specialist who has written prolifically on immunotherapy and other treatments. Working with my primary doctor and other specialists, we have agreed to stay the course with the current immunotherapy but get the kidney tumor removed. I am scheduled for a nephrectomy on September 22 and look forward to getting the tumor evicted from my body. September 22 will forever be known in my household as Eviction Day!  Next scans are November 1st to see where we are at with my kidney cancer and then the three-month cycle continues. This is truly a roller coaster with ups and downs so both must be managed, and expectations aligned. Also, I must be my own best advocate and challenge, probe, question, and question again my medical team to ensure I am comfortable with the choices being made because in the end, it is my body and my choice. I control!

LESSONS LEARNED (UPDATED)

In my original journey, I wrote about the lessons I learned. I won’t repeat them but will emphasize that they all hold true. They have been my “north star” as I navigate myself around this disease. They are not only relevant for me, but I would suggest relevant for others, including the healthy.  But it has been a year later, so there are a few additional things I have learned.

  • Our Lives Are Enriched By Giving

I often quote Mahatma Gandhi on so many subjects including giving back. He said: “The best way to find yourself is to lose yourself in the service of others.” Another person I quote is Winston Churchill who said: “We make a living by what we get. We make a life by what we give.”  In the past year, I have focused on giving back since I have received so much during my life.  It has made my life more fulfilling than ever and as Churchill stated, it has made my life.

  • Spirituality

It’s never too late to find your spirituality. I continue to search for answers with respect to religion and while I continue to search, I feel much more spiritual and closer to God without any religion strongly behind that faith. It gives me peace and I’m guessing it gives many other peace.

  •  “Bucket Lists” Should Be Part of Everyone’s Life

There is some debate on creating a bucket list and does it suggest death is imminent. I propose to you that bucket lists should be a part of everyone’s life starting at adulthood. Why not make a list of things you want to do in your life, continuously update it, and check them off one by one? Putting it down on paper is a mental exercise that helps you focus on what is important to you and gives you enjoyment. As you get older and look back on your life as well as forward, you won’t be starting from scratch, and you will be experts on doing this.

  • Developing the Right Mindset Is a Tedious but Critical Exercise

In the title of this update, I wrote that I am content but this time I really mean it. That’s code for when I originally wrote I was content, there were times when I was very challenged on this front, but I knew that by calling out my contentment, I had to live up to it more. I put my cards down and it was time to play the hand I was dealt. This past year, I would say I have been content 80 percent of the time which I think is damn good and maybe even higher than I was pre-cancer. By constantly reminding myself of what is important and there are just things I can’t control, I am a lot happier with my plight.

   •  How to Deal with Those Anxious Moments

No matter how hard I try, there are times my anxiety levels are high especially before and after scans. I created a technique that has really helped me with this, and I now share with you. During anxious times, I allot myself 30 minutes a day (no more) to wallow in self-pity, think worst case scenarios, and fret about things I can’t control. After that thirty-minute period, I refuse to allow myself to go there anymore for the day. I typically do this at 3am in the morning and by 3:30 I’m ready to go. It works.

  • Yes, You Can Have Friends Who Have Different Political Views Than You Do

It’s been a challenging few years with all the political division we have in our country and around the world. I won’t use this platform to share my views, but I will tell you that I know now, more than ever, that there are incredibly genuine, kind, and good people who have views that are opposite to me on the political spectrum. I learned this when several of my Stage IV RCC Face Book community became my friends on Face Book. We never share political views on the cancer site, but we certainly do on the public site and boy do we disagree on some big issues of where this country is and where it should be going.  What I learned in the last year is the bond we have dealing with our cancer is stronger than any political differences we have, and I see that much clearer in the past year. I will continue to urge people on both sides of the spectrum to first seek to understand and then become solution oriented for all not just the group they represent.  We must be better. All of us.

THE FUTURE – CRYSTAL BALL GAZING

As I journey onto my third year with this disease, I remain hopeful for many more years, but I also know that as my medical condition changes and becomes more challenging, I have made the most out of my life the past two years. I continue to learn. I continue to grow. I continue to further develop as a human being, and hopefully, I continue to improve. I have cemented even further the great relationships and bonds I have with my family and friends, and I am content! While I have no crystal ball (except when it comes to betting on Super Bowls and hopefully Fantasy Football this year), don’t be surprised if you get an update from me a year from now because I have plenty of fun stuff on my list in 2023. In the interim, please be good to yourself and others, focus on what is important to you, develop and enhance your legacy, and love everything life has to offer you. Don’t let the little stuff bring you down. Life is so very precious and short, even for the healthy.

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3 thoughts on “I’m Still Surprisingly Content Despite Having Stage IV RCC (And this time I really mean it!)”

  1. I am confused. Is it just what’s published here or is it your Thankful Friday posts from the past 2 years collected in a book(s)? If so, how do I order them?

    1. Hi Nancy, I just saw this. This was a special blog on the KCA post. My Thankful Friday Posts are posted on the Stage IV RCC FB community I am on.

  2. Thank you for sharing your story. Good luck with your upcoming surgery and I hope for a speedy recovery. I would like to help check off an item on your bucket list – hopefully we can connect soon.

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