***This blog post was written by Dena Battle.
My husband Chris was on a gurney in the hallway when I got to the emergency room at our local hospital. Balking on drinking the contrast. Sometimes a doctor or a nurse would drop by. They’d ask him if his pain was managed. He more or less nodded. The pain was in his abdomen. On the right side. Had to be appendicitis.
But, the CT didn’t show appendicitis. “It’s not your appendix.” said Dr. Brown.
Dr. Brown was as plain and non-descript as his name. Balding. If you asked me now how old he was, I couldn’t narrow it down to a decade. He was nice, even friendly. But, he didn’t mince words when he told us the results.
“You have a large mass on your kidney. We believe it’s renal cell carcinoma.”
He said some other things too, but I only remember hearing “carcinoma.” Because “carcinoma” sounds like cancer. Like something you get from smoking or being doused with agent orange. Carcinogen has been burned into our brains with anti-smoking campaigns for long enough – I knew that carcinoma was bad like a pack of cigarettes.
“We’re going to get you into a room and get you comfortable. Then we’ll get an x-ray, do a brain scan. I’ll talk to the surgeon – we need to get that kidney out.”
We didn’t ask questions, we just nodded in agreement. The next few days were a blur.
Chris had been home from the hospital recovering from surgery for about a week when he called me at work. “I need a fax number – the doctor has my pathology report.”
What happened next was what I would call a panic attack. One of my friends though is always quick to point out that he thinks it’s probably a normal reaction to a spouse being diagnosed with cancer. I started to sweat profusely and my speech was sort of garbled.
“You want to fax it here? I don’t know if I really have a fax. Who uses faxes anymore?” My heart was pounding out of my chest. I had been worried about what the pathology report would say and now I was going to have it, delivered to me, alone at my office.
“Dena? I really need the fax number.”
Not aware that I was melting into my chair, Chris was becoming slightly impatient – not angry, but sort of frustrated at my inability to give him a number. I finally relented.
I was on the floor beneath my desk when Chris called me to discuss the results.
The pathology report wasn’t good. I had tried to avoid reading what I could about Chris’s cancer, but I’m a researcher by nature and I knew enough to know that it was bad. The tumor was big – 11 cm. The designation for a stage 2 tumor is 7 cm. Chris’s was almost double.
The Fuhrman grade tells you how aggressive the cancer is. On a scale of 1 to 4, 1 is the least aggressive and 4 is the most aggressive. Chris’s tumor was a grade 3 out of 4.
Chris was methodical. Analyzing each detail. I was a babbling mess. He talked through the results, I cried.
“This isn’t great – it’s grade 3. I really was hoping it was grade 1.” Like he’d gotten a B+ instead of an A on an exam.
“I’m sure that if it was really bad, the doctor would have called us, right?” But, I knew in my heart that it wasn’t right. I knew that our doctor wasn’t the expert we needed. I wanted so badly for everything he said to be true.
“You’re cured!” Those were his words after the surgery. He was so confident. “I got it all!”
Over the next few weeks, we processed differently. Chris poured through medical journals, looking at survival algorithms, studying necrosis and hemorrhaging of tumor tissue.
I cried. I went through our refrigerator and threw away everything that had been bought before cancer. I cried some more.
After a few weeks of this, Chris sat down with me and showed me a chart he had made. “We’re smart people, Dena. We both have good research skills. I’ve divided up areas that each of us will focus on.” And he had. There were two columns – his and mine. I was assigned treatment analysis, he was going to research lifestyle changes.
The day before Easter, I sat down at the computer to begin my research. After a few searches, I found a group called SmartPatients. Suddenly, I was “meeting” patients from all over the world who were dealing with kidney cancer.
Everyone said the same thing: “A chest x-ray isn’t sufficient, you need a CT scan – with contrast. You need a different doctor. You need an oncologist, preferably a specialist in kidney cancer.” They also said things like this: “You will survive. You’re strong. Chris will fight. We will help you.”
The doctor who had performed Chris’s surgery was recommending that Chris come back for an x-ray in six months. He didn’t want to do any other testing and he was mostly focused on Chris’s remaining kidney.
Four doctors later, we finally found an oncologist who would perform a CT scan with contrast. The results showed that Chris had metastatic disease in both lungs.
My heart dropped when I heard the words. The numbness that I’d felt at the original diagnosis crept back in. But, then the doctor said something else, “We need to get you set up on chemotherapy.”
That numbness faded and anger seared behind my eyes. This was our fourth doctor – the one who finally had given us the scan that we needed. And one thing I knew for certain was that kidney cancer did not respond to chemotherapy. Armed with new information, I was no longer a frightened caregiver, one that would simply nod at a doctor’s suggestions.
I didn’t even look at Chris. I just said, “No. I don’t think so. This cancer doesn’t respond to chemotherapy.”
We left the office in the same way we had left the offices of the doctors who only wanted to do an x-ray. We just walked out, washing our hands of bad advice. My eyes were red and swollen and I had a headache. But, I wasn’t panicked and I didn’t crawl under my desk this time.
That day, I told Chris a theory that I had – kidney cancer is just common enough that every doctor thinks he knows how to treat it and just rare enough that only a specialist does. That day we began a quest for a doctor and a place that would fight this battle with us – not for us. That’s the search that led us to Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
Chris Battle ultimately lost his fight with kidney cancer. However, his wife Dena maintains the blog they founded together and still advocates for other kidney cancer patients. For more on their journey go to: http://kidneycancerchronicles.com/
Our Journey to the Johns Hopkins Kimmel Cancer Center,