Chapter 7–At Duke, There Is Hope

I sat in the long, narrow waiting room with one of those magazines on my lap that you don’t really read.  You just turn pages, a sentence here, a paragraph there, until they call your name.  When the receptionist summoned me, I hurried  over and picked up the big beige envelope imprinted, “X-Ray Film  Do Not Bend.”

In the car, I held up the film sheets against the gray light of the day.  I knew what they were, black and white insights into Ron’s brain.  I could not understand what the images conveyed, but I could read the radiologist’s report.

I did not cry as I drove home.  I don’t usually cry when I am red-vision angry.  How stupid to require brain tumor patients to endure the “approved” radiation and chemotherapy treatment that most often fails,  and only after they have been weakened by the treatment, allow them to try something that might work.  Whose life is it, anyway?  Why doesn’t a patient have the right to say, “I’ll skip your treatment with its five percent survival rate after five years and go right to the experimental treatment, thank you very much?”

Ron and I held the MRI scans against the dining room windowpane to study.  We guessed that the irregular white outline was probably the tumor.  For six weeks, while he swallowed the Temodar pills that left him nauseated and lay on the table while they shot radiation into his left occipital and parietal lobes, the tumor had kept on growing.

I took Greta to the back yard for a bathroom break.  Then Ron and I sat down at the breakfast bar.

“We could just say the hell with it and book a cruise somewhere,” I said.

He shook his head.  “No, I want to go to Duke.”

We had learned about the  Preston Robert Tisch Brain Tumor Center at Duke University Medical Center  http://www.cancer.duke.edu/btc before Ron started the conventional treatment.   I contacted the center, and was told the deputy director, Dr. Henry S. Friedman, would call me back.

“Don’t be surprised if he calls you at 11 p.m.,” the receptionist said.  And I thought Ron was a workaholic!

Yes, Dr. Friedman said, if the conventional treatment failed, we could come to Duke.  Duke became our last-chance hope.  If Ron wanted to seize it, we would go, even if I had to carry him to North Carolina on my shoulders.

For the first time since she had come to live with us, we had to put Greta in a kennel.  There was no way she could understand that  we would be back soon.  All we could do was give her a last pat and let the kennel staff lead her away.  Then we joined the lemmings, heading south on I-95 around Washington, around Richmond, and then onto  less-traveled   I-85 to Durham.

As we walked from the parking area to the brain tumor center, there was a huge blue and white banner:  “At Duke . . .There Is Hope.”

In the preceding six weeks, we had dealt with doctors who asked within five minutes of meeting us whether we had contacted hospice, doctors who didn’t have time for our questions,  doctors who wanted to make sure we understood the hopelessness of our  situation, and one doctor who tried to schedule Ron for an MRI when he still had metal staples in his head from the surgery.  We could use a little hope.

No one at Duke promised a cure.  We knew better, and they knew we knew.  But they treated us as if there was something that could be done, something other than sit down and wait to die.

“We are seeing promising results with CPT-11 and Avastin,”  they said.  CPT-11 is a chemotherapy drug approved for use in colon cancer. http://www.chemocare.com/bio/cpt.asp Avastin is a drug that starves tumors of what they need to grow.  http://www.avastin.com/avastin/patient/#/gbm/avastin/

There was one bad moment.  The Duke staff did the Mini-Mental status test.  Ron knew where we were, what day it was, and he could name three objects, or probably a half-dozen if they asked.  But then the doctor asked, “What is 97 minus 4?”

Ron thought for a moment.  “79!” he said triumphantly.

He knew immediately by the doctor’s expression.  Why did they keep asking?  They knew what parts of his brain were affected by the tumor.  Did they think  arithmetic would come back between Mini-Mental tests?

Ron said yes to the CPT-11 and Avastin treatment.  When would they start?

“Tomorrow, if you can stay.”

There was nothing we could have done with our lives that was more important.  The following morning, we reported to a treatment area filled with patients who lay still, hooked to ivs that dripped chemicals into their veins.  There was no whine of incoming missiles or call for air support, but this was a combat zone.  It held too many soldiers.

After the treatment ended, we went north, around Richmond, skipped the Washington Beltway because it was 5 p.m. and arrived home too late to pick up Greta from the kennel.  I hurried to retrieve her the next morning.  In the building, she greeted me with an indifferent, “Oh, you’re back,” nod.  But once outside, she danced in the sunlight and ran back and forth in the back seat of the car.

Maybe she just wanted to be sure she really was going home again before she put too much energy into a joyful greeting.

 

 

 

 

 

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