Tuesday, August 24, 2010

D Day Minus 179 (September 11, 2009): Every Cloud has a Silver Lining

“The CT Scan reveals a tumor within the root of the mesentery, which is unchanged in size, measuring 5.7 cm in largest dimension. There is, however, progression in the mesenteric lymph nodes, with an example increasing in size from 1.2 cm to 2.8 cm. Additionally, there is another node increasing in size from 1.8 cm to 2.6 cm, as well as increase in size of a portacaval lymph node.” Dr. P said it like we should fully comprehend what he meant. How could we? He sounded like the teacher in Charlie Brown, “wah, wah, wah, wah, wah.” And looked like one of the aliens on your old tee shirt. You know -- from your middle school shirt rotation. Remember, it had the pictures of nine aliens labeled so you’d now if they were happy, glad, sad, mad or what have you.  But, they all looked the same -- and showed no emotion. That used to make me laugh because it epitomized your dry humor. But, it wasn’t funny now.

I wanted to ask you, but forgot, do you think detached is an emotion? Because, that is the label I’d put under Dr. P’s picture. It’s how all the doctors look when the chemo isn’t working. Don’t you think?

“So did the chemo work?” You asked with more patience than I could've mustered.

Dr. P shook his head “No.”

I gripped the zebra pen, I brought for good luck so tight, my knuckes were white. I turned to the dog-eared page of my "question notebook" that held my running list of questions. And scribbled down some more.

Dr. P had you lie down flat on the blue naugahyde examination table. Then he poked your belly, felt under your armpits, checked your incision, and did some other checks that warranated privacy and dignity -- so I left the room.  And stood in the hallway. And wondered who's lives are changing behind the doors of the other examination rooms.  Because you and I know lives are changed behind those doors.  Lives are detached or reattached based on some stupid scan and diagnosis.   

“What’s next?” You asked fastening up a faded blue gown. I couldn’t help but think it looked the same as the one you were wearing last April when we were told the cancer was gone. Then I assumed my place in the corner -- pen and paper at the ready.

“You have the BRAF gene. We tested for the gene when they removed the cancer last February.”

“What does that mean?” You asked. I scribble ‘BRAF???’ on my notebook because I didn’t know to spell it.

“There’s a Phase I Clinical trial. It has been getting good preliminary results. Researchers think that if they stop the BRAF gene then they can stop the cancer from growing. The trial drug inhibits the BRAF gene.” Dr. P smiled, just a little. “They just opened up the trial here. I think you are a good candidate. But you’ll be seeing another doctor in Phase I Clinical Trials. I’ll contact him today if you are interested.”

I scribbled more questions down. I pressed down on the pen so hard it left impressions ten pages deep. I squeezed my brain to wrap my head around the thought of Clinical Trials. Not, really but I tried. The minute I heard Clinical Trials, I thought lab rats, red tape, the end of the road, awful tests, and mad scientists. And maybe hope – with a little h.

“What about the TIL Trial and surgery?” You asked, because you knew Dad would grill both of us on it.

“The cancer is in a place where surgery would make it worse. If a tumor develops that we could harvest, maybe some place easier to get to, then TIL might be an option.” Dr. P. said, shoulders relaxing. I noticed your shoulders were relaxing too. Mine, on the other hand, were still up around my ears. That is when Dr. P. gave me an opening for questions and I started firing and my “public” Rainman came out along with my notebook of questions.

“Can we see the Phase I Doctor today? What about insurance? What if this doesn’t work? How much time would we need to spend in Houston? Can Greg still work? What is the treatment like? What do the pharmaceutical companies pay for? Why can’t we come back to you as our doctor? What about insurance? How long until we know? If its growing, why doesn’t Greg feel worse? Is it going to make it worse? What if we did nothing?”

I didn’t ask about alternative therapies, because I was too afraid. But I did think about it. You did too.

Dr. P said we had to wait until next week to learn any answers. Except one. He wouldn't be our primary doctor if you got accepted on the trail.

We only wanted one thing. Hope with a capital H! Could having a defective gene give it to us?  We hoped so and spread the word.  You did when you broke the news to Katie and your posse at Wegmans.  I did when I dealt with Dad's inquistion, Morgan's sadness, and Aunt Janiene's chihuahuasness.

You know without hope, you don't have nothing. 


  1. I can't wait! My turn is coming up and we got some big Hope with a big H. BIZ

  2. I know. There are so many possibilities. Forever and ever BIZ.