Op-Ed: I Have Stage 4 Renal Cell Carcinoma, and I’m Surprisingly Content

Op-Ed: I Have Stage 4 Renal Cell Carcinoma, and I’m Surprisingly Content

Chicago Health is committed to publishing a diversity of opinions. The opinions expressed in this op-ed article are the author’s own. This op-ed is part one of a two-part series.

I am addicted to playing tennis. I play with 18-year-old kids and adults 60 and above in USTA mixed leagues. However, as I get older, the five knee operations and Achilles tendon surgery are taking their toll. My back occasionally aches because I have stenosis, herniated disks, spondylolisthesis (don’t ask), and other “old fart” ailments that come with the territory of a 63-year-old man.

So, in September 2020, when I was barely making it through matches due to excruciating sciatica pain that started at my left hip and went down my entire left leg, I assumed it was just another pain that I needed to suck up. I started going to a chiropractor for the sciatica but saw very little improvement.

One day in November, when the pain was so severe that I couldn’t get out of the car without assistance, I went to my orthopedic surgeon. I was thinking he’d prescribe steroids or injections to help with the pain, along with physical therapy. The orthopedic surgeon ordered X-rays and an MRI. Pretty standard stuff, I thought, proud that I didn’t get claustrophobic during the MRI.

The following Monday, my orthopedic doctor called and, empty of emotion or empathy, said, “You have a very large lesion on your iliac bone, which is suspicious for cancer that has metastasized from somewhere.” Such a cold way to be told you have a terminal illness caused me to cry out for my wife, Donna, and wail for a bit (or was it hours?). The doctor suggested I contact an oncologist. His invoice came a few days later, and he was done with me. I haven’t heard from him since.

After crying buckets of tears, getting consoled by my wife, Donna, and giving the news to my three daughters, Brittany, Amanda, and Taylor, I began the process to find the right oncologist. My primary physician recommended someone who I saw the next day. Time was of the essence. I wanted to get the cancer out of my body immediately and be cured. I wanted my old life back.

Unfortunately, I wasn’t thrilled with the doctor or the hospital. Thankfully, Brittany, who is a pediatrician, got me an appointment to see the head of oncology at the northwest suburban hospital where she has privileges. I saw him a few days later, and he ordered several CT and MRI scans, blood tests, and a bone biopsy to ascertain the origin of the cancer.

In 2007, I successfully battled prostate cancer and was cured, so I assumed this cancer was somehow spreading from the long-gone prostate. But a few days later, my new best friend, my oncologist, informed me that I had stage 4 clear cell renal cell carcinoma that had metastasized to my bone in several places on my spine from my head to lower back. Renal cell carcinoma usually starts as a tumor growing in a kidney. On my right kidney, I had a small 4-centimeter cancerous tumor that was the culprit.

My oncologist also told me, in a calming way, that there was no cure for what I had, and the course of action is palliative. I had always thought of that word as the equivalent of hospice — in other words, I thought I was dying and only had months, weeks, perhaps just days to live.

Treatment is not a treat

The next week or so was a complete blur to me, but once the tests were completed, my oncologist suggested immunotherapy with the drugs Opdivo and Yervoy. I’d never heard of immunotherapy, but I came to understand that, unlike chemotherapy that kills both cancer cells and normal cells, immunotherapy engineers your existing immune system to attack cancer cells.

It’s a relatively new treatment, and it’s even newer for renal cell carcinoma. The treatment is systemic — i.e., treating all the cancer in my body versus surgery to the kidney and elsewhere.

One of the hardest things for me to understand was that, unlike my prostate, which I’d gotten out of my body in record time, doctors weren’t removing the cancerous kidney. I would have to learn to live with the cancer in my body, and with every pain in my back that felt like the cancer was calling out, “I’m going to get you.”

Every month, I get the immunotherapy treatment intravenously, spending half a day at the hospital’s cancer center. (They have got to find a better name. What about “the get-well center”?)

With chemotherapy, the survival rate for my type of cancer is less than 20% after five years, while immunotherapy is showing better results.

Immunotherapy can cause side effects including severe fatigue, colitis, pneumonia, and hypothyroidism. In rare circumstances, it can cause death. (For your reading pleasure, go to the Opdivo/Yervoy websites for more scary details.)

I also had to deal with severe back pain from the iliac lesion. To alleviate the pain, I had three weeks of radiation to shrink the cancer. The radiation is painless, but I became very nauseous after a few days. Never fear, a Zofran pill each day made that go away.

However, the radiation did cause me even greater fatigue. Between that and the immunotherapy, I was confined to the couch like a corpse. I spent most of the day engrossed in self-pity, my anxiety and pain at an all-time high. I have always told my children that anxiety is worse than reality, but I wasn’t listening to my own advice.

The five emotional stages of cancer

The five stages of dealing with cancer are real, and there is no avoiding them.

Stage 1: When I received the first phone call giving me the dire news, I experienced complete shock and denial.

Stage 2: That shock quickly turned to anger. I was so angry this was happening to me, just as I’m about to retire and enjoy the next 40 years of life. Yes, you heard it correctly, I always planned to live to 100.

Stage 3: I then seamlessly moved into the bargaining stage. “God, give me 20 more years and I’ll be a better person,” I softly said at least 50 times a day. “At least give me 10 more years.” “How about at least five?”

Stage 4: Next, was the worst stage of cancer, which is sadness, and depression. I was certain I wasn’t going to see my grandson Aidan Joel turn 4. I would never see my Cleveland Browns compete for an NFL championship, and my most recent piece of Lou Malnati’s deep dish pizza might be my last. I was sad, depressed, didn’t want to do anything, and held frequent pity parties.

Stage 5: Sometime in March, I transitioned into the acceptance stage and accepted the challenge to be a warrior and fight this disease. I started getting optimistic that I had some good moments left in me.

Once I began to understand that stage 4 cancer just means the cancer has spread, and that stage 4 cancer isn’t necessarily a death sentence, people stopped treating me like I was a goner. We have a lot of control over how people look at us. If you think you are going to die, people will act as if you are going to die. If you are ready to accept the disease and fight like hell, you’ll likely find that you have several good moments ahead of you.

While I continue to be in the “let’s beat the shit out of this cancer” stage, I would be lying if I didn’t tell you that I still have anxiety, sadness, and moments of loneliness, but they don’t rule me now, and for that I am thankful.

Scanning the horizon

It’s now November 2021, and I am tolerating the treatments very well. My last two three-month scans have shown stability with no growth, which suggests the current treatment is succeeding.

My thyroid stopped working, but some studies suggest this indicates the treatments are effective and is a good sign. I developed severe fatigue from both the immunotherapy and the radiation, as well as a rash that caused temporary itching, which drove my wife crazy.

I have nowhere near the stamina I had before — exercise is draining, naps are the norm. And while I can play tennis again without too much pain, my game isn’t the same due to my lack of stamina. Nevertheless, my tennis partners put up with me, provided I continue to display my self-deprecating on-court tennis humor. I’m also jogging (or is it fast walking?) two to three miles on my treadmill every other day.

While I’d love to lose the 15 pounds that I gained throughout the Covid-19 pandemic, my medical team is thrilled that I haven’t — losing weight is typically not a good sign for people with cancer. I’m angry at the pants that are too small for me, and at my two-pack abs that are now 1.5-pack abs.

I feel very fortunate to have the right doctors and to be at the right hospital taking advantage of everything they have to offer me. My next set of scans is in the middle of November, which will be my one year “cancerversary.” Assuming they are stable, I’m going to celebrate with my family. Even if the results are not what we hope, I’ll still find some reason to be with my family. They have been my rock from day one, and we will find any reason to celebrate.

Joel Stern lives in Kildeer, Illinois, and has stage 4 renal cell carcinoma. He is retired but previously held several senior in-house legal positions and was most recently the CEO of the National Association of Minority and Women Owned Law Firms. This op-ed is part 1 of a two-part series. His next op-ed for Chicago Health focuses on lessons he’s learned through his cancer journey.