Young and Sick: Fighting Kidney Cancer

A personal account of what it's like to be diagnosed and treated for the disease

This is what I've learned, having cancer. It's best to go ahead and get it out there.

Forget being subtle. Forget being polite. The easiest thing to do is just to say, "I have cancer," just as if you were saying, "Yeah, I have red hair, no big deal." And by easiest thing to do I of course mean the one that makes you the least likely to cry.

So here it is. I'm 34. I have cancer. The same kind of cancer that killed my dad.

***

When I was 15, my 46-year-old father went to the doctor because he couldn't stop coughing. He thought he had a new allergy, he said. What he had, it turned out, was Stage IV kidney cancer, which had spread from one of his kidneys to his lymph nodes to his gallbladder to his lungs. This was shortly before Thanksgiving in 1992. My father died on Veteran's Day one year later.

I had started to smoke the summer before my dad got sick—I was 15 and terribly awkward and thought cigarettes would be an excellent way to meet boys. (They are, it turns out.) I knew it was idiotic, I knew it wasn't healthy, but I loved the way cigarettes always gave me something to do. I never developed a heavy addiction, but I could never give them up, either, especially in social situations. Standing nervously at a party becomes much less uncomfortable if you ask someone if you can borrow a cigarette. Boom—instant conversation.

So 18 years later, I am 33 and still stupidly bumming cigarettes on occasion, mostly after a couple of drinks. But when I wake up one morning with a pain in my side in March, it never occurs to me that it is tied to my dad, or my smoking. I had been out the night before, and I had mixed gin and Scotch, and I am so hungover I think I might die, and I am sure something is wrong with my liver.

After the pain doesn't go away for several days, I go to the University of Tennessee Medical Center emergency room. They do blood work and a urinalysis and an ultrasound and a CT scan. They say my liver looks fine, my pancreas looks fine. They say I don't have a kidney stone. They think it might be my gallbladder. They refer me to a specialist, a gastroenterologist.

The GI runs more tests. I have a nuclear imaging scan of my gallbladder. It's working just fine, he says. I have an endoscopy, in which a tiny camera looks at my stomach and intestines. There are no ulcers, no signs of anything wrong. "Are you going through a stressful time right now?" my doctor asks.

I am stressed out, of course—I have a new job in a city I've been in for less than six months, and I'm in a bad relationship. But I also know the pain isn't all in my head. It hurts when I drink water first thing in the morning, for one. That can't be stress.

Still, I'm so sick of hospital appointments and tests that I temporarily give up on finding a solution to the pain. The days go by. I turn 34. The pain no longer seems so sudden. I get used to it. Some days it's still so bad I have to stay in bed for a few hours, but most of the time it's just there, a small pain in my side, a new part of me.

In September I finally get an appointment with my new primary-care physician, Dr. Amy Forsee. I have a routine checkup, and then she asks if there's anything else. "Well, there is this pain in my side," I say.

I tell her the whole story. Because she's affiliated with UT Medical Center, she can pull up all the tests on her computer. She looks at the ultrasound, the one that was taken at 2 a.m. in the emergency room. "Hmmm," she says. "There's a cyst on your kidney. I can't imagine it's what's causing your pain, but given your family history, I want to take a closer look." She orders another CT scan, this time with contrast. "I'm sure it's nothing," she says. "I just want to rule everything out."

The scan, it turns out, does not rule anything out.

This is the moment everything changes, sitting in Dr. Forsee's office weeks later, as she tells me that I don't have a cyst on my kidney, that I have what looks like it could be a tumor but I'll need to see a urologist to confirm it, that it could still be nothing, it could be benign, but there's a chance that I have kidney cancer, just like my dad.

I had a nightgown as a little girl that said "Daddy's Little Princess." My little sister had a matching one that said "Mommy's Little Angel." They were just nightgowns, I know, but they were also true. I was his little princess. I always said if my parents got divorced, I would live with my dad, because I was the most like him. I had my mom's dark eyes and my mom's tan skin and my mom's thick hair, but I had my dad's everything else. And now I have his cancer.

I don't officially know I have his cancer, of course. That takes another three weeks. But deep inside me I know. I know whatever is inside me is not benign.

***

Kidney cancer is not a sexy cancer. It only added its own awareness month this year—previously it just had a day, March 8, and even that was a shared event with World Kidney Day. No one really famous has died from kidney cancer, just minor celebrities like Lee Remick. The closest thing to a celebrity spokesperson the Kidney Cancer Association seems to have is Denise Richards, whose mother died from the disease.

Yet kidney cancer is the sixth most prevalent cancer nationally (eighth in Tennessee). It is the 10th most common cause of cancer death in men. The American Cancer Society estimates that in 2012 there will be 64,770 new cases of kidney cancer, from which about 13,570 people will die. But you never hear about it.

Here's how uncool kidney cancer is—when my dad was diagnosed, he told people he had lung cancer. Crazy, right? Of course, he could never bring himself to admit he was dying, either. Me, I'm not dying. I'm statistically likely to be just fine.

Of course, statistically, I never should have gotten kidney cancer. "I am the one percent," I e-mailed a friend last fall after my diagnosis. According to the National Cancer Institute, Americans have a 1.19 percent chance of getting kidney cancer in their lifetimes. White women, age 35, who have never had cancer before have a .012 percent chance of getting kidney cancer. That's 1 percent of 1 percent. Those were my chances.

Still, kidney cancer rates have doubled between 1975 and 2008. And according to the KCA, while kidney cancer normally affects men over 55, more young people are being diagnosed. But there's no easy way to test for kidney cancer, no recommended preventative treatment, so the disease stays silent.

***

I find out I have cancer on Monday, Oct. 24. I am in the office of Dr. Frederick Klein at University Urology at UT Medical Center. It is nothing like I imagined. I am told I have cancer by a fresh-faced resident, not Dr. Klein. It is in a patient room, not in the actual doctor's office, the way it always is in Hollywood movies. I am sitting on an uncomfortable chair. There is a maroon and hunter-green wallpaper border.

I can't remember what he actually says, but it's something along the lines of, "You're going to need surgery to remove your tumor and there's a small chance it could be benign but we won't know until we take it out and the surgery is laparoscopic and you'll have four or five incisions here and here and here and you'll recover pretty quickly, as long as nothing goes wrong."

I do remember he tells me I have a complicated arterial structure going into my kidney, and he seems kind of excited, like I have the first kidney with a complicated arterial structure he has seen outside of a textbook.

He asks, "Have you seen your tumor?" I say that I haven't. He takes me outside the room, out into the hallway, where he pulls up my CT scan on a computer. "It's here," he says, pointing to a small dark lump. It looks like a tumor. It looks like a fingernail. It looks like a kidney bean. "It's 11 millimeters by nine millimeters," he says. "See?"

I can't unsee it. I wish I could. "Can you go get my mom?" I ask.

My mom comes down the hall from the waiting room, where she has been reading.

"I have cancer," I tell her. She hugs me.

"I knew it," she says, and hugs me again.

"I know. I knew something was wrong," I tell her.

"Wait, what?" She pulls back, her face filled with shock. It dawns on me that she misunderstood me.

"Oh my god," she says. She starts crying. It dawns on me that no one should ever be in the position of telling your mother that you have cancer.

Later Dr. Klein will come in and explain some things, and my mom will calm down, and even later, secure in the knowledge I'm probably not going to die, we will spend a lot of money on dinner at Chez Liberty. But for now there are just tears.

***

The most common symptom of kidney cancer is blood in one's urine, but it's a symptom neither my dad nor I ever had. My bloodwork was normal, in March and in September. My father's bloodwork was normal just a month before he was diagnosed—and he had Stage IV cancer. The problem with kidney cancer is that there are often no signs until the cancer has spread.

The good news about kidney cancer—and one of the reasons for its statistical increase—is that it is now being caught earlier more often, generally by pure chance and sophisticated digital imaging. Take Andrew Kozsan. Two years ago, at age 44, the West Knoxville resident had a pain in his side that he thought might be related to yard work. But he wasn't sure, so he scheduled a visit with a urologist. A CT scan showed a tumor on his kidney—on the opposite side of where he was having the pain. Kozsan had surgery to remove the tumor, and now he's fine.

"I guess like most people, I was kind of stunned, unsure of what to do, but I immediately went into a mode of, okay, what do I need to do to beat this?" Kozsan says. "I don't think the being stunned part was more than about 10 minutes, and I realized, you know what, I can take this on two ways. One, I can feel sorry for myself, or two, I can attack it. And I chose to attack it with a positive attitude."

This is what I hear when I start telling my friends and family that I am sick. They tell me that I can beat it, that I need to stay positive. I think about my dad, who stayed so positive and was so determined to beat his cancer to his last breath that he never said goodbye to anyone. I don't know if I am much like him, after all.

***

A week and a half later, I meet Dr. Wesley White. My mom is with me. "I feel better than I did last week," she says as we are waiting.

"How did you feel last week?" I ask.

"Devastated," she says, rocking back and forth in her chair. "It just floored me. I just had a real hard time believing it."

It is difficult to go through this with my mom, but I cannot imagine going through it without her.

Dr. White finally walks in the room. "What did Dr. Klein tell you about this thing in your kidney?" he asks. "Did he show you your films?" I say that he did.

"So basically in your right kidney in the lower part there's a little solid mass in your kidney," Dr. White says. "The solid masses in your kidney that take up ID dye have about an 85 percent chance of being cancerous."

Dr. White is the surgeon who will cut out my tumor, using the help of little tiny robot hands, so that I will only have five smallish scars on my abdomen, so that I will only lose part of my kidney. The procedure is called a laparoscopic partial nephrectomy. I like the clinical sound of the term. It sounds much less frightening than "losing part of one's kidney."

Dr. White, I will later learn, is the same age as me. I am glad I do not learn this until after my surgery. I can't help but thinking of him later as the man who saves my life, even though it's really Dr. Forsee who catches the cancer. But it's Dr. White who makes the incisions that I'll carry with me for the rest of my life. It's Dr. White I will see every six months the next several years for a CT scan.

But today, here, Dr. White explains the surgery. He draws me a picture. He explains the 1 percent chance that something can go wrong—excessive bleeding, blood clots, permanent kidney damage. There's a risk I could lose my whole kidney. There's a risk, as with any surgery, that I could die.

***

I know that I am lucky. I know that I am lucky to have the cancer that I have. I don't need chemotherapy, I don't need radiation. I just have to have one major surgery that will leave me with five smallish scars across my torso. I'll probably never flaunt a bikini again, but that's hardly a tragedy.

I know that I am lucky because I have seen worse. Not just my dad, but my friend Laith Keilany, who was diagnosed with non-Hodgkin's lymphoma six years ago. I meet Laith for dinner at Sitar in November to compare cancer stories.

Laith was 30 when he found a lump under his arm that turned out to be cancer. He had a tumor on his lung the size of a grapefruit. He had a year of chemo, but the cancer kept growing. He couldn't find a match for a bone marrow donor. Running out of options, Laith opted to become the third adult ever to go through a cord blood stem cell transplant at Vanderbilt, which required more chemo and full-body radiation and has left him with years of side effects, including two hip replacement surgeries. Compared to Laith, my cancer is a walk in the park.

Months after my surgery, Laith and I will talk again.

"There's still that paranoia of it coming back, or getting something, but you just try not to let that get in the way of living again," Laith says. He has been cancer-free for five years. "You gotta fight to be as positive as you can. That's really the main thing. And it's hard. It's not easy. It will take your life away in so many different ways, and it's hard to gain it back. But it's doable. I don't consider myself a very unusually strong person in any way, but somehow I made it through."

If Laith can stay positive, maybe I can too.

***

On Nov. 20, I have surgery, but it is not the surgery I am supposed to have. The previous day I had fallen down my basement stairs while cleaning my house in the middle of the afternoon and broken both the bones in my right leg and another bone in my ankle. I end up with two plates and 12 pins in my ankle.

I am not having a very good run of luck, I decide.

Dr. White comes in to see me in the hospital. He tells me my surgery needs to be postponed, that I can't have surgery twice within two weeks, even as young and otherwise healthy as I am. At first I am annoyed, but as the days go by on crutches, I can't imagine how I will get by with a broken leg and abdominal incisions. I am not supposed to laugh after my kidney surgery—how on earth will I hop?

My surgery is rescheduled for Dec. 19. I get increasingly nervous as the days inch down, obsessing over the possibility that something could go wrong.

That day before my surgery I limp to a friend's Christmas brunch. I can't eat anything—clear liquids only for 24 hours—but I have a glass of champagne, even though I know I probably shouldn't. It is my last day with an intact kidney. It is my last day with a belly free of scars. It is the last day I am whole, and I need to celebrate that.

The next morning I check into UT Hospital. I take off my clothes. I take off the sapphire ring my father gave me for sixth-grade graduation, the ring that I am never without. I put on a giant purple paper hospital gown. I wait.

A nurse comes in and draws my blood. The anesthesiologist comes in. Finally, it is time.

***

According to the most recent statistics from the state, approximately 75 people in Knox County get kidney cancer every year. That's the third-highest number in Tennessee, behind the more populous Shelby and Davidson counties. In 2010, 20 people died from cancer of the kidney or renal pelvis in Knox County, 7 percent of the state's total deaths from those cancers.

A lot of these patients, like Kozsan and me, end up in the office of Dr. White. He performs the overwhelming majority of the laparoscopic partial nephrectomies in the Knoxville area.

Dr. White tells me that in addition to the prevalence of CT scans, the second main reason for the cancer's statistical increase is the rapidly aging population of baby boomers, many of whom smoked in their youth. Smoking is one of the top two causes of kidney cancer. Genetics is the other.

Dr. White says it is unlikely that smoking caused my cancer at my young age. I am not so sure.

***

I wake up from the surgery in a lot of pain. It is more pain than I expected. I cannot sit up. I cannot roll over. I cannot get used to the catheter.

My hospital room is decorated with cheery arrangements in Christmastime colors, even though I asked my friends not to send flowers. I am glad they ignored my request. The flowers make the beige walls fade into the background.

I spend the next three days sleeping as much as possible, drugged on heavy doses of Percocet. I am supposed to be walking around the hospital, but I can't walk. My mother has procured a walker for me, since I can't handle crutches, but I can barely stand up to make it to the bathroom after the catheter is removed. Both she and a nurse have to help me.

The nurses come in every couple of hours. They check my IV, they check my vitals, they give me an enema. My bowels have been moved around during the surgery and it's important to get them working again, I am told.

My sister comes home for the holidays and sits in the hospital room with me. We don't bother turning on the television. I eat Jell-O for two days. I have never felt worse in my life.

Three months after my surgery I will be at a party with the resident on my case, Dr. Brent Hardin, who wakes me up at 6 a.m. each morning in the hospital to look at my incisions. At first he will not remember me, but once I mention my broken leg, he will know who I am.

We talk about my health and discuss the placement of my scars. He asks if I have seen the surgery. I say that I haven't. He appears shocked that I never thought to search for videos of laparoscopic partial nephrectomies. He pulls up one on his phone to show me. As I watch the video, I think that the robot arms look like sinister silver spiders, prodding and pulling the flesh of the kidney. I feel amazed that this is what happened to me.

***

A month after my surgery, I go in for a follow-up visit with Dr. White. He goes over the pathology report with me. My tumor was 1.2 centimeters. It was clear-cell renal carcinoma. It was between a grade 1 and 2. It was stage T1. There were cancerous cells plugging the blood vessels draining the tumor.

It is this last part that is the bad news. It means, according to statistics on the Internet, the chances of the cancer coming back double, from just over 2 percent to 5 percent. Those are still very good statistics.

Dr. White tells me not to read too much into it.

"Everyone would love to have that security blanket, to say you're a 100 percent cured, but we can't offer that guarantee," he says. "But I don't see this little aspect of the pathology report significantly impacting your overall survival. Okay?"

"Okay," I say.

"So focus on the good parts on the pathology report, not just the one tiny little negative part. This was not an aggressive tumor, so it's likely never to come back. But I can't give you that stamp saying that you're a 100 percent cured. Okay?"

"Okay," I say again, fighting back tears. I want to believe him.

***

Days go by. Life returns to normal. I go back to work. I walk the dog again. I keep waiting for the mundanity of existence to feel more heightened, more precious, but it doesn't, not really. Life is still life. Bills still need to be paid. The house still needs to be cleaned. I don't feel joy in my ability to still be alive to do those things. They are the same as they ever were—annoying things that must be done. I am both profoundly different for having had cancer and yet essentially unchanged. I am still me. Just with scars.

***

I have my last cigarette on Nov. 12, 2011, one day and 18 years after my father died. I think he would be proud.

***

SIDEBAR:

Signs and Symptoms Associated with Kidney Cancer:

• Blood in urine.

• Pain in the back just below the ribs.

• A mass that can be felt.

• Unexplained weight loss which can sometimes be rapid.

• Intermittent fevers or night sweats.

• Fatigue and lethargy.

• Fever that is not associated with a cold or the flu.

• Pain in other parts of the body if the cancer has spread.

—source: Kidney Cancer Association