In February, after mailing a CD with my latest lung images, and eagerly awaiting news that I would be reconsidered for a clinical trial, I received a message from the research nurse at NIH. They had reconsidered, but the answer was "No." The news was shared over the phone:
Nurse: I have your chart, and the doctor wrote a note. I want to read it to you. It says,
"No suitable sites for resection. Largest one on the left would require
an open thoracotomy, possible lobectomy. She should either look for
other options, or rescan and re-evaluate in 6 to 8 weeks."
Me: What? How can that be? There's a node on the left. What size are they looking for?
Nurse: Between one and one-and-a-half centimeters across.
Me: I have one--it's in almost the exact location of the first one they were considering--it's almost a mirror-image.
Nurse: I'm sorry. I can scan your chart into our database and send it to the gastro department. They might have something for you.
Me: Is there a report? Can you send me the report?
Nurse: There's no report, it's just a sticky note on the outside of your chart.
Me: A sticky note?! Will you email me the exact words? This doesn't make any sense. I need to see it in writing.
was stunned. What would it take to get into this trial? I met all of their criteria, but they weren't acknowledging it. I was crushed. "Seek
other options?!" I had no other options--this was my option! It was
my chance at the closest thing to a cure outside of a miracle that I
knew of, and the door got slammed in my face again. I was devastated. I called Patrick at work and sobbed, "They said 'no'." I was utterly shocked to hear myself say the words out loud.
"I'm coming home," he stated. Despite my protestations that he needn't leave work, his mind was made up. "I'll be there as soon as I can."
I hung up the phone and cried. But then I remembered that priest. He had promised to pray that I would get into the trial. If my prayers weren't being answered, maybe his were...I turned to my left, and gazed at the Divine Mercy image hanging on my bedroom wall. If ever there was a time when complete trust was needed, this was it. I repeated the words associated with that image, "Jesus, I trust in You."
Between the time when I hung up
the phone with Patrick and the moment he walked into the house, I had dried
my tears, squared my shoulders, and decided that I wasn't going to accept a refusal without a better explanation from NIH. I didn't know which doctor had written the note, or anything about the processes in place for evaluating trial candidates, but I had to try something.
I grabbed my copy of the latest scan and loaded the CD onto my
computer. I quickly found an image of the node that I thought would qualify me for the trial. Using the viewing software's measuring tools, I displayed the node's height and width on the computer monitor, then captured a screen shot. I composed an email to the nurse requesting that she ask the attending physician to look at the image attached to the email.
"Maybe," I reasoned, "they just stopped looking after rejecting the largest tumor (Jose). I'm sure that Jorge (a different tumor) will make them change their mind." Instead of a crumpled, crying mess, Patrick came home to find his wife in warrior-mode.
Within just a few minutes of sending my request for another review, the nurse wrote back to assure me that she
would forward the email to [the attending physician that I requested]. A few hours later she emailed again to let me know that the doctor had submitted my case to the thoracic team for review.
I sincerely thanked the nurse for her help, hung up the phone, and fist-pumped the air. "Hallelujah!", I cried. Even if
the answer came back "no" a third time, at least I would have the peace of mind of knowing that I had done everything within my power to get into that trial.