I didn’t expect to be here to write this column. When I say “here,” I don’t mean OMRF or Oklahoma. I mean here, as in, on this earth.
You see, I’ve been diagnosed with cancer. Twice.
The first time was no big deal. I know it sounds like I’m being a tough guy, but that’s not the case. I’m just being honest.
As a physician and someone who’s spent decades of my life researching cancer, I like to think I have a pretty good handle on the disease. So, when my doctor told me in 2011 that I had prostate cancer, I didn’t freak out. I knew it was completely curable.
Prostate cancer is a very common form of the disease—even more so if you have a family history, which I do. My dad was diagnosed two decades ago and received treatment. He’s still alive today at the age of 97.
Of course, no one chooses to get cancer. Still, among all the possible forms of the disease, prostate cancer would be at the top of my list. Yes, you have to be treated. But the outcome is almost always positive. More than 90 percent of cases are completely cured.
I didn’t tell anyone at work about my diagnosis. I barely spoke about it to anyone else, either. My wife, Susan, was puzzled by this, but I thought it best not to cause worry where it wasn’t warranted.
For me, this approach made perfect sense. I’d processed the risk—minimal, I thought—and just moved on to picking a treatment. After talking to my doctor and mulling over my options, I opted for radiation.
The procedure I picked is called brachytherapy. A urologist and radiation oncologist implant radioactive “seeds” in your prostate. The idea is that over time, the radiation generated by the seeds wipes out your cancer.
It was an outpatient procedure, and I was under anesthesia for an hour or two. By that afternoon, I was up and walking around. In the ensuing weeks, I didn’t experience any complications. Months passed, and my PSA level (a measure of prostate health; the lower, the better) dropped basically to zero.
I thought I was cured. So, I went back to the business of living my life. I got check-ups occasionally, and everything seemed fine. After a few years, it was pretty much as if none of this had ever happened.
That all changed in the summer of 2017.
If nothing else, my experience with cancer has shown me what a roller coaster this disease is. Up one moment, down the next. A jarring turn here, a rapid acceleration there. You think the ride’s over, and right then, it hits you with a stomach-churning drop. The only thing you know is that you never know what’s coming around the next bend.
During a business trip, I noticed that lymph nodes in my groin were swollen. When I returned home, I made an appointment with my urologist. He measured my PSA level, and I was relieved to learn it was still zero. When he did a CT scan, the only things it showed were those inflamed lymph nodes, along with a slightly enlarged one in my chest. Everything else was fine.
Lymph nodes serve as a sentinel system for the body. They filter out “bad” cells; when they’re swollen, they’re telling you that something in your body isn’t right. Usually, it requires more detective work to discover the exact nature of the underlying problem.
With my history of cancer, I immediately suspected some sort of recurrence. Specifically, I worried the prostate cancer had come back, only this time I worried it had metastasized—spread—to my colon. The very thought filled me with dread, and with shame.
I’d studied colon cancer in the lab. I knew how important it was to get regular colonoscopies after turning 50. I’d had one, but I was overdue for another. I grew obsessed with the possibility that I’d waited too long.
I guess there’s a reason folks say that doctors make the worst sort of patients.
Still, when I had a colonoscopy, the results came back as normal. No cancer.
I then visited an oncologist, fully prepared for her to tell me I had metastatic prostate cancer (even though this would have been unusual given my low PSA). Much to my surprise, she didn’t. Instead, she told me that a biopsy of my lymph nodes had revealed a cancer that looked like a form of the disease known as squamous cell carcinoma.
A few weeks later, further testing revealed the origin of the cancer. It stemmed from a tumor growing in my urinary tract, just outside the bladder.
The site of the tumor wasn’t surprising: It was precisely where the radiation seeds had been most concentrated. That radiation had killed the prostate cancer. But, presumably, it had caused other cells to mutate—and induced this new variant.
What was so curious was the nature of this new cancer. It did not look at all like a typical male urological cancer. Instead, it had the characteristics of tumors that start elsewhere.
The cancer was anaplastic, which meant it was rapidly dividing and “jumbly.” The cells were multiplying quickly, and they’d lost resemblance to normal, healthy cells. This was bad news.
When doctors sent a sample of the tumor out for genetic analysis, they found many mutations. These are changes in the DNA makeup of the cells. In cancer, the greater the number of mutations, the harder the disease can be to treat.
In other words, more bad news.
My urologist shared all this with me on the Friday before July 4. Susan and I had accepted an invitation to go to a wedding that weekend, and I figured we couldn’t back out. Of course, I didn’t want to tell anybody there. Instead, I just kept it bottled up inside me. By the end of the weekend, I was a wreck.
We’d been planning to take our granddaughter to the beach after the wedding, but I told Susan that I just couldn’t do it. The thought of fireworks and picnics just didn’t jibe with my reality any more. She agreed. We cancelled our plans for the next week and made new ones—at a cancer center.
The cancer I’d developed was so rare that doctors couldn’t really compare my case to others. Still, one thing was abundantly clear: My circumstances were dire. Despite what you may have seen on TV or the movies, doctors don’t tell patients that they have a certain amount of time left to live. But I, more than most, could read between the lines of what they were saying.
I looked at my calendar for the rest of the year. Every holiday or meaningful event on there, I realized, might well be my last. It was a bitter pill to swallow.
I put together a bucket list. It was pretty short. I wanted to see my family: the kids, grandkids, my father, my brother. And I wanted to live until Christmas.
In cancer, there’s a certain sense of betrayal.
Your own cells have literally turned against you. It’s as if there’s an alien creature inside of you.
This idea of something “other” lurking within your body is terrifying. It’s also, I believe, what’s given birth to all the war metaphors that surround cancer. You have to do battle with cancer. Keep fighting. Never, ever give up.
But, for as long as I’ve studied cancer, I’ve disliked that language. Cancer is a disease. Like many other diseases, it can respond to certain treatments. The trick is to find the right one. And to be lucky enough to have a responsive form of cancer.
If your cancer doesn’t respond—or stops responding—there’s a point where continuing to seek out new therapies is fruitless. With certain forms of treatment, it can also be punishing.
In patients, I’d seen many forms of courage. One of the most poignant was the courage to stop treatment. To recognize that the best path was to move on to palliative care. To try to make the most of the time they had left.
This is how I wanted to handle my disease. I knew I wasn’t yet at that point. But I probably wasn’t that far away, either.
The tumor was deep in my urethra. As it grew, it caused me increasing pain and discomfort. When my physicians performed a PET scan, they saw that the tumor wasn’t alone; my midsection lit up with metastases like a jack o’ lantern. The scan also showed that the cancer had spread to my chest and lungs.
The best hope was not to try to dig out all the individual tumors. They were cropping up so fast that surgery would be no more effective than shoveling during a blizzard. Instead, my doctors recommended an aggressive course of chemotherapy.
Chemotherapy is a blunt instrument; it floods the body with toxic chemicals to kill the cancer cells. Still, like most poisons, those toxins harm more than their targets, wreaking havoc throughout the body. In particular, they destroy fast-growing cells. This is good when those cells are cancerous. But it’s not so good when they’re blood cells, which you must regenerate constantly to stay healthy and alive.
When doctors administer chemotherapy, they walk a fine line. Not enough chemo, and the cancer can kill the patient. Too much, and the chemo can devastate the body.
I had a few days to prepare for treatment. Doctors tested my hearing, as one of the potential side effects would be hearing loss. They also surgically implanted a port in my chest, which would allow for the most efficient I.V. delivery of the various medications I would receive. They urged me to clear my calendar and focus all of my energy on the 12-week regimen that was about to begin.
Up until that point, other than a small circle of family and friends, I’d kept my condition to myself. But with the long treatment road that awaited me, that would have to change.
I gathered key members of OMRF’s leadership team and explained my situation. I didn’t share every detail; who wants to hear about the agonizing night I spent in the ER because my primary tumor had blocked my ability to urinate? Still, I didn’t mince words. I explained my diagnosis. I told them the long odds I faced.
I don’t know how this will turn out, I said. And I have no idea the toll it’s going to take on me. So, I need you guys to continue precisely what you’re doing. Administrative staff, keep the foundation running in tip-top form. Scientists, keep pushing your research forward.
I sent emails about my cancer to all OMRF employees, board members and a broad group of friends. I wanted to be open. Most people aren’t accustomed to dealing with someone facing a life-threatening illness. They feel awkward around that person, in part because they don’t know what, exactly, they’re supposed to know about his or her condition. By laying the facts on the table, I hoped to eliminate that barrier.
Sure, some would still feel uncomfortable around me. I mean, how do you make small talk about last night’s game with a guy who might not even be around come playoff time?
Plus, deep down—no matter how irrational we know it to be—there’s a superstitious, frightened part of each of us. We’re scared of catching what that person has. You look at me, and you’re confronting your own mortality. You think, that could be me.
My treatment began on a Monday. I spent the morning getting pumped full of medications to prepare me for chemotherapy. There were steroids to prevent inflammation. Antihistamines to guard against any sort of allergic reaction. An extremely potent anti-nausea drug. Lots of fluids to ensure my kidneys were protected. Then drugs to drain excess fluids.
Even though I’m a physician, I didn’t ask my doctor a lot of questions about my treatment regimen. That was by design. I didn’t want to obsess over every little detail, I told myself. But if I’m being honest, there was a simpler explanation: I was scared.
A little after noon, I received my first chemo infusion. That took about an hour and a half to drip into my body. Following a brief interlude for more fluids, I got a second chemotherapy drug. Somewhere along the line, I received another dose of anti-nausea medication.
All told, I spent about eight hours in the infusion suite, watching as I.V. bags slowly drained their contents into me. When one emptied, a nurse came and switched it for another. Here and there, I’d drift off, drowsy from the antihistamines. But, happily—and surprisingly—I did not feel nauseated.
At around 4:30, my last I.V. bag emptied. I was ready to go home.
Just one more thing, my doctor said. She handed me a small backpack with a clear, rubber tube snaking out. She hooked the tube to the port in my chest. This was oncology’s version of a to-go order. Inside was a pump that would push a third form of chemotherapy into me while I ate dinner with Susan, relaxed with a book and, finally, slept.
It was a long, exhausting day.
The rest of the week followed a similar path: I.V. medications at the doctor’s office during the day, then pumped in through the backpack at night. On Friday, after I received a final injection of a drug to boost my white-blood-cell count, I let out a deep breath. I’d finished my first round of chemo.
Other than the port in my chest, which was a little weird, I didn’t feel any different than normal. I had energy. No queasiness.
That continued for the next two weeks, during which I recovered from my treatment. Each day, I took a handful of pills. When my hair started to fall out, I decided to cut to the chase. I shaved it all off.
I would undergo three more rounds of chemotherapy like this: a week of treatment followed by two weeks of recovery. When my doctor examined me at the mid-point of this process, she voiced cautious optimism. The once-swollen lymph nodes in my groin had shrunk.
That’s a good sign, she said.
Still, we wouldn’t know anything concrete until I had a full-body scan. For that, we’d wait until the end of the 12-week regimen. By that time, there’d be a clear picture of whether the drugs were working. Or not.
A dear friend of mine has lived with lymphoma for many years. So, he’s no stranger to the periodic scans that cancer patients undergo.
It is, he says, like having someone lead you into a prison yard and hand you a cigarette. Then you’re blindfolded and lined up against a wall. You stand there, just waiting for the bullet. But, instead, a voice says, “Not today.”
At least I hoped that’s what the voice would say.
The urinary pain and discomfort had vanished, and the swelling in my midsection seemed to have disappeared as well. Other than occasionally being caught off guard by a reflection in a mirror of a guy who looked like Mr. Clean, I could almost forget I had cancer.
Because there were also times when I’d be overcome by intense sensations of dread. There wouldn’t be any particular trigger I could identify. It happened at the most unpredictable moments.
I’d be having a routine conversation with someone, and—bam!—I’d be seized with a crushing sense that something terrible was about to happen. My heart thrummed. I could feel rivulets of sweat forming on my body. Breathe, I’d say to myself. Just breathe.
As the date of the scan neared, the frequency of these episodes picked up. It’s not fair, I’d hear my inner voice say. Sometimes, it screamed, Why me?!
But, intellectually, I knew cancer was never fair. I mean, who deserves this disease?
You do your best to control the odds. But you don’t get a free pass just because you don’t smoke. Or because you exercise and eat well. Or even because you’ve devoted a big chunk of your career to trying to understand and find new treatments for cancer.
The nurse found the vein in my arm and inserted the I.V. needle. Moments later, a solution of glucose—sugar—laced with a radioactive isotope began to flow into my body.
Once we’d waited long enough for the radioactive sugar molecules to circulate throughout my tissues, I laid down on a sliding tray. For the better part of the next hour, that tray carried me, ever so slowly, through a doughnut-shaped hole into the belly of a massive machine known as a positron emission tomography (PET) scanner.
A PET scan detects cancerous tumors. It does so by measuring how cells deal with the sugar solution: Cancer cells retain it longer than normal ones. The radioactive particles linked to those sugars then create a visible map of that activity. The more spots light up, the more cancer.
As I lay motionless in the chilly room, I couldn’t feel the scanner searching my every nook and cranny. My veins seemed no different than when they didn’t have radioactive substances coursing through them.
Still, I knew that this moment was different.
Did life’s journey have another leg or two remaining? Or had I reached the end of my travels?
Of course, nothing inside me would be altered by what the scan showed. But everything about my world would be transformed when the doctor announced those results. It’s one thing to be dying. It’s quite another to know it.
I can recall few times in my life more stressful than awaiting those test results. And few moments of greater joy than when I received them.
You’re in remission, my doctor said. Complete remission.
I gulped, incredulous.
My primary tumor had shrunk remarkably. The PET scan also showed that the tumor was essentially dormant, so my doctors saw no need to remove it. In the other parts of my body where the cancer had previously spread, diseased cells were no longer detectable.
I was done with chemotherapy, at least for now. Instead, my physicians recommended follow-up treatment with a drug called Lynparza. It’s a therapy primarily used to treat ovarian cancer. However, genetic sequencing showed my cancer carried a mutation much more commonly found in ovarian tumors. So, my doctors hoped, a handful of these pills each day would keep my disease in check for the foreseeable future.
About a year has passed since that moment. Happily, my cancer has shown no signs of returning. Still, I don’t consider myself cured.
One day, I expect the disease to come back. I’ll feel a lump. A dull pain that doesn’t seem to go away. Or, perhaps, at one of those periodic PET scans I still undergo, they’ll tell me, “Well, Steve, the news isn’t so great this time.”
When that happens, I’ll try a new therapy. Chances are, it won’t be as effective as my previous treatments. It may not work at all.
At some reasonable point in the process, I’ll say uncle. I won’t throw any Hail Marys. Instead, I’ll savor the time I have left.
But I hope that day is a long, long way off.
In the meantime, I’ve enjoyed having hair again. And celebrating Christmas—plus New Year’s, my 70th birthday, Susan’s birthday and my granddaughter’s graduation. At this point, I’m deep into uncharted territory. I’m living days I never expected to see.
With each sunrise, my outlook has grown brighter. I’ve grown so bold as to start adding to the bucket list I put together when I was first diagnosed.
I’d like to float the Grand Canyon. See the Aurora Borealis. Clink a glass of bubbly with Susan on our 50th wedding anniversary in June.
That any of this is even possible is a tribute to medical research.
Each of the forms of therapy I’ve received came from laboratory discoveries like those that scientists at OMRF make every day. My doctors’ ability to tailor my treatments to my particular form of the disease was a direct result of breakthroughs in DNA sequencing in the last decade. The drug I’m now taking to keep my disease at bay reached the market just four years ago.
I’m alive today because of the changed landscape of cancer research and treatment. Indeed, I shudder to think whether I’d be here had my cancer developed even a few years earlier.
Although I’ve spent most of my adult life in the lab, these past 18 months have given me a fresh appreciation for research. They’ve driven home why it’s so important to keep searching out new approaches for treating disease. And they’ve instilled in me a profound gratitude for all those who show the foresight and generosity to support scientific investigations they know cannot benefit them—only, perhaps, those who come later.
Still, the most wonderful—yes, wonderful—part of having cancer has been the unexpected gifts it’s brought me.
When I shared news of my diagnosis, people showered me with messages of hope. They prayed for me. They showed me countless acts of kindness.
That compassion helped give me strength in grim moments. And now, every day, it reminds me to do the same for others.
In our home, Susan and I recently hung a photo of the two of us dancing. It was taken last fall. In it, I’m bald as a cue ball. And I couldn’t look happier.
That image perfectly captures my relationship with cancer. I know it’s a part of me. But I’m not going to let it stop me from living my life.