Wednesday, May 18, 2016

Follow-Up #7

No real news this time, for once!  It's been ten months since I received TIL therapy.  I was back at the hospital for follow-up number seven last week.

First thing on Monday, as usual, I went directly to phlebotomy for a blood draw (only six vials this time).  Later in the day, I had a CT scan.

On Tuesday, I had apheresis. To my immense relief (understatement!) the procedure turned out to be the shorter one. Even better, my research fellow spent some time with me, talking about his work in the lab. The conversation helped to get my mind off of the blood circulating out of and back (gack) and I was very thankful for that.

When the requisite amount of white cells had been collected, my husband and I bolted over to Medical Records to pick up the disk of CT images from the previous day's scan.  I set up the laptop at one of the teensy tables in the atrium.  I was taken aback at how different the scan looks now that I have one fewer lung lobes! I wasn't able to study the images for very long; it was almost time to go to "OP3", where my follow-up would happen.

Even though I expected to hear good news, I had dreaded this appointment for weeks.  It was the last one I would have with my current immunotherapy fellow. It makes me sad to think of someone else as my doctor, but I'm happy that he had (what I hope was!) an interesting and fulfilling year on the service. I consider myself most fortunate to have been in his care over the past year, and I am confident that his future patients will feel the same way.

We stepped into the hallway to review the scans, and I stood there thinking how bizarre they look now.  My right lung lobes have sneaked their way over to where the now-missing left lower lobe had been. My heart is literally in a new place! "Mother Nature will not tolerate empty space," is what I was told. It's so strange-looking to me. Regarding cancer, my fellow saw nothing of concern.  Thank God!

The next morning I met with the thoracic surgeon for follow-up.  He wanted to see how the incisions were healing, first thing.  Little did I know that he would find something that needed attention.  He said that my body was "spitting out a couple of stitches" (gack! again!), and so he removed them.  Actually, his assistant removed them but Ow! OW! QUIT IT!!! After that unpleasantness, he had only good things to tell me, so we left the NIH on a high note.

My follow-ups will get stretched out from now on. I'll go back quarterly for a time, and after that, even less-frequently if all continues to go well.  I am praying that it will!

Sunday, May 1, 2016

The Girl Who Lived (apologies to J.K. Rowling)

I am now three weeks out from surgery to remove a progressing tumor and its necrotic neighbor. TIL therapy killed six other tumors, but one remained that did not fully respond to the cell therapy. Instead, it was surgically removed via lung lobectomy.

This inpatient stay lasted one week. On the day I was discharged from the hospital, I asked my doctor to "say the words." He understood exactly what I meant. He obliged by saying the happiest phrase there is for me right now:  "No Evaluable Disease." Hearing those words--from him, especially--filled me with a joy I can't begin to describe.


It is almost incredible to me. Not very many months earlier other doctors--several of them--described my diagnosis as terminal. Yet, a couple of days ago, a written discharge summary arrived via USPS from the NIH which told a better story. As I slowly read the report, my mind absorbed every word, recalling each scene as I had experienced it. My cancer riot was all there--years of uncertainty, painful treatments, and now success--distilled into a few short paragraphs on a couple of sheets of ordinary paper. It was written by the doctor who, to my great benefit,  had seen me through the rigors of the clinical trial, on-going follow-ups, and this most-recent lobectomy. It is this doctor's voice that I hear when I read the report.

Ms. Ryan is a 50 year-old female with a history of colon cancer who after undergoing standard therapy, self-referred to the Surgery Branch of the National Cancer Institute
She received 148 billion cells
(she underwent) a left lower lobe resection.

Colon cancer metastatic to the lungs, now without evaluable disease.

I read it over and over. I marvel at all that has happened to me:  surgeries, chemotherapy, radiation, and countless needles, transfusions and bone-crushingly painful neupogen injections...the nausea, the fatigue, the waiting--waiting for acceptance onto the trial (2 no's before a yes), waiting to know whether my cells would grow, waiting to know whether they would work... All of it leading up to this one amazing report; this one phenomenal result: Restored Health. No evaluable disease. I cry tears of joy and relief, but then a wave of sorrow hits me as I think of friends who passed away in this same space of time.

I thank God for this life. Always. Always. I thank God for the men and women at the NIH, and for all of the people who prayed for me.

What's Next:
I am scheduled to undergo apheresis again early in May, to facilitate another TIL treatment (one that I may never need).  I had hoped for begged for the shorter apheresis procedure, but no. It will be the longer one, where they circulate my blood volume five times. They say they need more dendritic cells. They also need more "feeders." Bleargh!

"Feeders?!" The word conjurs unpleasant thoughts. I am too squeamish. Instead, I will dwell on the phrase, "No evaluable disease."

I am dreading the 5-1/2 hour apheresis procedure but I will try not to complain.