Part 2 of In My Own Words: ‘The cancer has spread to my brain’

Second of two parts

Suddenly paralyzed, Christine Stewart was taken by an ambulance to Naples Community Hospital. The diagnosis: a broken spine and metastatic lung cancer. Only 36, and with two small children, she was horrified to learn that the disease had a survival rate of 2 percent.

Radiation restored her ability to move and, in a body brace, she went to see Dr. George Simon at H. Lee Moffitt in Tampa, where she pushed for the most aggressive treatment possible.

Meanwhile, a long-distance friendship became much more when Mark Mrkus, whom she had met at a work seminar, moved from Texas to Naples after the diagnosis.

August 2004

Dr. Brian Walker sat across from me, reading from Dr. George Simon’s treatment plan. “Four cycles of Cisplatin and Gemzar, definitive radiation, follow-up with second-line chemotherapy, Taxotere. Maintenance program of daily pill, Iressa.”

A new targeted therapy, Iressa would attack only the cancer, rather than all fast-growing cells like conventional chemotherapy. “It’s good,” he said. “Though I think that the people who do the best get eight cycles of chemo.”

“Then I’ll do eight cycles.”

(Practical Truism: Stack every situation toward success. Do what has yielded the best results in the past.)

My Cisplatin-Gemzar treatment was given in three-week cycles. The first week, it was Cisplatin and Gemzar both five hours with an IV drip. The following week, just Gemzar — two hours. And the third week, only blood work, to see how the chemo was affecting my red and white blood cell counts. It took six months for the eight cycles, but it was not nearly as bad as I expected.

“New anti-nausea drugs,” one of the chemo nurses explained. “It’s so much better than it used to be.” Still, for about a week following the Cisplatin, I felt vaguely nauseated, and I needed to sleep a great deal more than I ever had before.

My chemo and radiation would take a solid year to complete. I had only just begun.

(Practical Truism: Don’t be discouraged if the achievement of a goal will take time; the passage of time is the one certain thing there is.)

October 2004

“Your bones are healing surprisingly well.” Radiation oncologist Dr. Debra Freeman showed me computer images of the now-familiar holes in my spine beginning to fill in with white. “This one’s filling in, too, and we haven’t even radiated it yet. That’s a good indication that the chemo’s working.”

We grinned at each other, delighted.

Meanwhile, my Practical Truisms book was complete, and I printed copies for friends and family. Now, at least I knew that my children would know these things that I wanted them to know, even if I wasn’t there to tell them.

January 2005

I was onto the next step: definitive radiation. “The first radiation we gave you was for symptom relief,” Dr. Freeman explained. “Every body part has a certain maximum amount of radiation it can take, that’s definitive.”

“How does radiation kill cancer?” I asked.

“It damages the DNA. The cancer doesn’t actually die until it tries to divide, and it can’t. Radiation kills healthy cells, too, but they have genetic instructions to be there. Normal cells fix the damage by growing back, but the cancer doesn’t grow back, because it isn’t supposed to be there.”

I looked at the floral scene on the ceiling, with its red laser light peeking out from among the leaves.

“Damn right it isn’t.”

March 2005

The second chemo, Taxotere, was easy to take compared to Cisplatin. Easy on the stomach, that is, but much tougher on the hair. I had hardly lost any hair during the first chemo regimen.

“Why are you wearing a wig?” my children asked. They didn’t know I had cancer, only that I had broken my back. I just couldn’t tell them, but now my hair was really falling out and I was going to have to.

“Shave it off,” I said. Mark pulled out the electric razor.

“This is a very hard look to carry off.” I was sitting on the bed, looking myself in the mirror. Mark put his arm around me.

“Mom?” Eric opened my bedroom door. He saw me and gasped. His hands covered his mouth in horror and he backed slowly away, down the hall. Mark and I looked at each other and laughed.

“Eric!” I went after my son.

“I have cancer,” I told my kids. “Have you heard of that?” They nodded.

“My teacher had cancer,” Eric said.

“My friend’s mom has cancer.” Katie said. It affects so many people, I thought. I never realized how many.

“Well, cancer can kill a person, but my treatment is going very well.”

There. That was true. I waited for the question I knew would come next, the words I had been dreading: Are you going to die?

“Mom?” Katie began.

“Yes.”

“Can we have pizza rolls for dinner?”

April 2005

Nearly a year since diagnosis, I no longer had to wear the brace unless I was hurting. “Why does it still hurt, though? Why do I still need painkillers?” I asked Dr. Paul Dernbach, a neurosurgeon.

“With the alignment your spine now has, you’ll probably always need them,” he responded. I hadn’t thought of this possibility. I could have been paralyzed, I thought.

(Practical Truism: Remind yourself to be grateful for what you have, so that you don’t become resentful for what you’ve lost.)

May 2005

The annual trip to Aruba marked one year since diagnosis, and the completion of my treatment. All that remained was the daily pill. While I had been undergoing treatment, a new drug, Tarceva, had become FDA approved. It too was a targeted therapy, once-daily pill, and it was supposed to be more effective than Iressa. If any stray cancer cells did exist, hopefully it would take care of them.

I began Tarceva while I was in Aruba. By the time I returned home, my face was tight and red splotches had appeared on my face and neck.

“The worse the rash, the better it works,” Dr. Walker said. I set to work trying different things to make my skin look and feel better until at last I found a system that worked well.

(Practical Truism: Don’t expect your first attempt to work. Rather, try your idea, observe the results, then modify and repeat. Each attempt is not a failure — it is data that will lead you closer to the best possible solution.)

My PET scan was scheduled for three days after I returned from my vacation. As long as it showed no new sites, it would be a good result. I had an appointment with Walker the following day.

“Bad news. The original sites are all gone, but there are new sites on your tailbone and two of your lymph nodes.”

I had one last hope. The PET results had not been glaring. Could it be a false positive? An MRI would provide visual confirmation one way or the other.

“Doctor Freeman has the results,” I told Mark. “2:30 appointment.”

An impromptu appointment with the always-busy Freeman was guaranteed to be a lengthy wait. I took one of the latex gloves from the counter and blew it up, securing the end with a rubber band from my purse. I tossed it to Mark and we hit it back and forth. We played with the glove for more than an hour. Finally, the door opened and the doctor entered. We sat down at once, immediately serious.

“The MRI confirmed the PET results.” I closed my eyes for a moment.

“That’s it then. I’m gonna die.”

One of the hardest things in the world is saying to your doctor, “I’m going to die,” and having them not disagree with you. I went to get my purse. The contents were sprawled on the counter from my earlier search for a rubber band. I grabbed a handful and tried to shove it in. It wouldn’t go. A tear slid down my cheek. I’m going to die. I tried to shove more things into my purse but still they wouldn’t go. I’m going to die. Frustrated, I shoved my purse. It flew down the counter, dragging everything with it. I heard it all crash as I walked out the door, tears streaming down my face.

I walked outside to my car, sobbing openly. But I couldn’t open the door; my keys were with my purse. I laid on my stomach in the grass, head cradled on my arms. No one was around, but I didn’t care who saw me. I was completely alone in the deepest, most profound grief I had ever felt. I had lost the battle I had fought all year, and my children would suffer for my failure.

After a while, Mark found me. He knelt beside me in the grass, my purse clutched awkwardly in his fist. Then, Dr. Freeman knelt down in the grass beside me, too.

“I talked to Doctor Walker,” she said. “Let’s see what the Tarceva does.”

June 2005

“The cancer has spread to my brain.” I was on the cell phone to my father. “They want me to radiate my brain. It has to be radiation because chemo can’t cross the blood-brain barrier.”

“Doesn’t it cause brain damage?” I had asked, after receiving this latest devastating piece of news. “Some minor side effects,” they said. But I went home and searched the Internet: balance problems, memory loss, cognitive impairment.

“I’m not doing it,” I told Mark. “I’d rather be dead. I’m a thinker. If my mind isn’t functioning right, then I’m not me.” This was the first time Mark and I disagreed. We decided to go out to Cancer Treatment Centers of America in Texas to get another opinion. One of the top cancer hospitals in the country, M.D. Anderson Cancer Center, refused to even see me unless I had my brain radiated first.

(Practical Truism: Gut feelings should not be ignored. If you’re not sure what to do, proceed slowly and carefully. In time, all things become clear.)

“It’s true that there is some damage to the brain when it is radiated,” the oncologist at CTCA said, “but radiation only causes damage to the cell when it divides. Cancer cells divide rapidly; brain cells, very slowly. That’s why radiation kills the cancer cells, but not the brain cells, for the most part.”

“I know you don’t want to radiate your brain. Who would?” Mark said. “But the cancer’s there, and it will damage your brain if you don’t do it.” The truth of this hit me like a ton of bricks.

“You’re right.” I dropped my head into my hands in dismay. “It’s controlled damage versus uncontrolled damage. I have to do it.”

Six weeks had passed. I left word at Dr. Freeman’s that I would do the radiation, following one more MRI of the brain. I stopped by her office after work the next day to see what the MRI report said. Freeman was as surprised as I was when she read the report.

“We’re not going to radiate my brain!” I exclaimed as soon as my mother picked up the phone. “The Tarceva is getting to the brain! Thank you, God!”

September 2005

“Do you want to get married?” I asked Mark as we prepared dinner. After my CTCA trip, I had studied nutrition, switched to organic and whole grain food, and added natural supplements, cancer visualization and meditation to my regimen.

“Aren’t we already married?” he asked, smiling.

“No, I mean for real.” He put his arms around me.

“I would love to marry you. For real.”

November 2005

We got married at sunset by the beach on Nov. 15. Katie was my flower-girl; Eric was the ring bearer.

“Where should I bury the ring?” he asked.

A week later, I had another PET scan done. I had been on Tarceva six months. My parents called me, looking to know the results.

“I don’t know anything yet.”

Finally, it was time to leave work and I hadn’t heard anything. I went out to my car. My cell phone beeped with a new message. I listened:

“The doctor just looked at your test results and he says you’re in a major remission. It’s a completely normal PET scan. Lucky you!”

A shock ran through me. Remission! I hadn’t expected that! I listened to the message again, then I called Mark.

“That’s (deleted) great!” he exclaimed.

Then I called everyone else.

January 2006

My daughter Katie, now 9 years old, came up to me with my book, “Practical Truisms” in her hand.

“Look how far I am!” She showed me her place halfway through.

“I’m so glad,” I told her with a hug. “I wrote it so you and Eric wouldn’t have to learn everything the hard way.”

“Thanks, Mom,” she said, and then she kissed me.

Epilogue

I don’t know if I’ll be cancer-free forever. Actually, no one does. But until I hear differently, I’m cured. I have work to do, to help and inspire people, just like I promised I would.

If you would like to contact me, or if you need help dealing with Tarceva skin, please visit me at www.PracticalTruisms.com. I am here to help.

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In My Own Words is an occasional feature in the Naples Daily News and the Bonita Daily News. Do you have an inspiring or interesting story? Tell us about it by e-mailing neapolitan@naplesnews.com. We may choose to share it with readers.