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.

No
Evaluable
Disease

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.

COURSE IN HOSPITAL
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.
.
.
.
CLINICAL DIAGNOSIS:
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.

LIFE IS GOOD!

Will They Let Me Go?

Some drama during what did turn out to be, thankfully, my last night inpatient at NIH had me wondering. The "night thoracic fellow" came in to assess my recovery sometime after 8:00PM. The thinking had been that one more x-ray, the following morning, would be my ticket out of there. Sadly, I seemed to be too puffed up, literally, for it to go that easily.

The thoracic fellow pushed various places around my left chest and side. I could feel the sponginess. After what I thought was quite a lot of him comparing, listening to, and pushing on me, he phoned the thoracic surgeon, "the boss," as he referred to him, to find out what the next step should be.

"The boss" ordered another x-ray for that evening. Off we went. Upon our return, the night nurse offered pain meds, and took vitals. New tonight, and because of the sponginess, she told me that I'd be sleeping "with oxygen." I got to choose between humidified, or non-humidified (humidified, please). She flagged my room as "Do Not Disturb" after she left, and I fell asleep quickly. In the morning, I could tell that the puffiness was worse than it had been the night before. I was at x-ray at 7:00 AM. The tech there recognized me after so many visits, and filled out the sign-in sheet for me.

Shortly after returning to my room, the "daytime thoracic fellow" was there, assessing. She mentioned that they might have to "put in a little chest tube." This was not what I wanted to hear at all. My own fellow came in later, and did his assessment. He advised me to walk around the unit until morning rounds started. This I did, making circuit after circuit. I got light-headed at one point and crashed into my husband's shoulder, unable to move enough air. I thought, "This is it!  They're not going to let me go."

We didn't bother starting to pack up the room. We waited for the doctors to do their rounds. First to round was the immunotherapy team. It was a smallish flock this day, but it did include the principle investigator (The Guy!) The decision about whether I would stay or go was entirely up to the thoracic team. The attending said that the morning's x-ray looked "about the same" as the one from the night before. I didn't know if that was good news or bad news.

A few minutes later, the thoracic surgeon came in with his flock (of one), plus my fellow, to talk to me about how the morning walking went, how I was feeling, and how spongy he felt that I was. After listening to my lungs, and considering for a while, he told me that he was sending me home! Woo Hoo! I am to have a follow-up x-ray at my local hospital in a week, and to mail the disk to NIH.

We were strongly encouraged to include lots of stops during the drive home. The doc suggested that I get out and "do a few laps" every couple of hours. "Walking is the best thing you can do for yourself," he said, and so we did. We stopped five times on our 500+ mile trip.


It's good to be home!