Tuesday, June 2, 2015
Sent: Dec 17, 2014, at 7:44 PM
I so wish I had better news to share, but pathology revealed that the nodules in my lungs are metastasized colon cancer. [My oncologist] read the report to us this afternoon.
As you can imagine, it wasn't easy news to hear. I'm thankful that we know for sure what we're dealing with, and that there are promising treatments out there. Please pray that God will make the best path really obvious. I'm a little overwhelmed at the moment.
I'll keep you posted...guess it's still too soon to retire the blast-o-grams.
I'm so thankful for you!
I had declined my oncologist's offer of more chemotherapy. I wasn't ready to face cycle after cycle of treatments that made me feel so terribly sick. Statistics on its efficacy for cases like mine did little to convince me of its benefit. I told my oncologist, "I want to try immunotherapy." I had read about another woman's successful treatment, and knew that that is what I wanted to try.
Two days after learning that I was dealing with metastatic disease, I was on the phone with a research nurse at the National Cancer Institute, part of the National Institutes of Health (NIH) in Bethesda, Maryland. It was my forty-ninth birthday, and I was filled with hope.
After our phone call, the nurse at NIH emailed a long list of items that I would need to provide, including: all pathology reports, a CD with the latest two CT/PET/MRI scans, surgeon's notes, chemotherapy records, radiology records, and more. I started making calls to various doctors' offices. Emails flew back and forth. All of the providers needed a signed consent form before they could proceed, so a pattern of sign, scan, and return via email repeated itself over and over. I think it helped that Christmas was only a week away. Clinics and medical offices seemed less-busy than usual. All of my requests were handled quickly and efficiently, with the exception of one. NIH required "biologicals", in this case, slides containing minute samples of the original tumor.
It took nearly a month of miscommunication between three institutions and myself before the tumor slides appeared in the mail room at NIH. The day they arrived there, the research nurse sent them to the lab for analysis. Unfortunately, nearly three weeks later, the results of their tests showed that I was not a candidate for three of the four trials that were presented to me as possible options.
The fourth potential trial (what we refer to as "the TIL trial") required a fresh, resectable tumor. That is, a tumor of sufficient size, located such that removing it would not cause undo harm. Surgery would take place at the NIH in Bethesda, MD. I was notified early in January that one of the doctors had reviewed my September CT and PET scans and reported that "[I] would potentially have a lung lesion that would be resectable for the [fourth] trial." I was excited to get the ball rolling.
My joy at the potential for joining this trial was short-lived, however. Upon further investigation, it became clear that the tumor that the NIH physician wanted to harvest had already been removed during my recent lung surgery. This doctor deemed the remaining tumors "too small" for their purposes--and just like that--I was no longer under consideration for the trial. The research nurse broke the news to me over the phone.
Nurse: Unfortunately, the tumor they wanted is gone. None of the others are being considered.
Me: But there's an almost identical tumor in the other lung.
NIH: The doctor says that it doesn't meet criteria.
Me: But...but...it's practically the same size...nearly a mirror-image!
NIH: What we can do is revisit your case after your next CT. I'm sure the nodes will probably grow by then.
Me: But...but...[internal sobbing] OK, thank you.
I hung up the phone. Lord, what now?
I dug out the disk for September's CT scan, the same scan that the researches had scrutinized and found lacking. I located Casamina, the node they would have used, and measured it. Next, I found the node I had hoped would be their second choice, Jorge, and measured it. The difference between a useable tumor and one that was too small was two millimeters. Two millimeters. I could barely comprehend the fact that my inclusion in the trial was halted by a difference of only two millimeters!
In the dark of night and the quiet of our bedroom, I recounted the whole miserable turn of events to my long-suffering husband. Silent pondering ensued as I lay on my back staring up into the blackness of the room. "What I need," I said aloud, "is faith." Hearing myself say the word "faith" triggered a memory.
Faith the size of a mustard seed could move mountains†. NIH certainly seemed like a mountain in need of moving, to me. Two millimeters was a tiny thing to cause such distress. Surely, if I was meant to be included in the trial, I would be. Then I had a thought that made me smile:
From end to end, a mustard seed itself measures about two millimeters. Hope was restored. The next morning I made an appointment for a new CT scan. I would send it to NIH as soon as it was available.
† Matthew 17:20