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!

What Happened to Tuesday?

So much of my stay this time is a blur. I've been mostly in my room, with two trips to x-ray (morning, and night). I'm visited by nurses throughout the day. They deliver pain meds, post-TIL treatment meds, and they take vital signs every eight hours. There is very little sleep.

With the chest tube, sleeping happened in spurts. I always woke myself when I'd try to change positions. It hurt a lot when I would move in my sleep.

Breathing was another adventure. I managed to pull 2250 ml on the spirometer (volume of air I can inhale). This was a record for me!

Last night, the thoracic surgeon clamped the chest tube closed. This meant the suction box thingy would no longer be helping me (It was pulling air from the space outside the lung, should any be leaking...pretty sure). By clamping the tube shut, the doc rendered it ineffectual. He would be able to tell by how I responded, over the course of 24 hours, whether it was safe to remove the tube itself. Even though the hose was clamped, I was still attached to the box. I eventually named it, "Beelzebub." It went everywhere I went.

More x-rays last night, and this morning. Then! Then! The thoracic doc decided that I would be O.K. to exist minus the chest tube. He pushed down (hard) around the insertion site while the fellow ripped the tube out. She was not quick at this, I am sad to say. It probably felt quick to her, but to me...notsomuch! It was not exactly painful but the longer a procedure takes, the more likely I am to get nauseous. You'd think I'd get used to this stuff, but apparently not.

I was encouraged to walk as much as possible, and to ask for pain meds. They will no longer keep me on a schedule for those (hurray!) My husband and I took a chilly walk around the hospital wing, and then I decided it was time to put on my own clothes!^†

Tomorrow, I'll have what I hope is the final x-ray during this stay. If it's good, they'll send me home! We have an eight-hour drive ahead of us, but hopefully I'll be able to tolerate it O.K.

† I have since learned that, according to the Patient Handbook, patients are expected to wear their street clothes as much as possible while inpatient. oops.

Queen of X-Rays and of Pain

I am four days post lung surgery.  The chest tube is still doing its thing.  Sort of.  Seems that some air is not making its way to the tube, but instead leaking into other tissues.  I am "spongy", they say.  Who knew that was a thing?  Not me.  The thoracic surgeon says this is not a big deal, so I will believe him.

I've had quite a few x-rays since surgery...par for the course, I'm told.  I've had two per day for the past few days. I'm becoming a familiar face to the techs.

During grand rounds this morning, I asked the Lab Guru for "the scoop," so he stayed after the others had left and told us all about what's happened in the lab so far, and what will happen next. I got to see photos of the two tumors that were in my lung!  ick! ick! ick!

When I saw "Junipero" (who-KNEE-pair-oh), my first reaction was, "So there's the bastard!" My second thought was, "Wow...how many patients have this opportunity? This is amazing."  Shortly after that, the ick-factor kicked in and my brain shut off.  ha.

Each tumor will be tested in ways that I can't even imagine. It is the first time they've had both a necrotic tumor and a live tumor to study from the same post-TIL patient.

During our conversation, I believe that I solidified my standing of "weirdest patient ever", by accidentally letting the very dear Lab Guru in on the naming convention I have been using all along.  I usually hesitate to reveal this to the medical types, but it just came tumbling out.  "José is dead!  Woo Hoo!"  That little outburst led him to ask, "What's the other one called?"  Yeah, so.

Stop staring at me.

Backing up to yesterday:
It was a horrible, awful day. I woke at 6 AM in excruciating pain. The chest tube was causing back spasms, the insertion wound felt stabby, my shoulder throbbed, and I could not inhale except for what seemed a woefully inadequate amount. I cried. I sat up in my bed and cried and cried...no sobbing though--that takes too much air. All I could do was wipe away--over and over--the unstoppable stream of tears that slid down my face.

Misery.

During this episode, the surgical fellow walked in. She assessed my situation, checked my suction box thingy, and offered some sincere words of condolence. I hate crying, and I especially hate crying while being watched...watched by a stranger. It was humiliating. So there I was, in pain and humiliated. Not a great way to start the day. The doctor left, formulating a plan as she went, I'm sure. Shortly thereafter, meds arrived and things eventually got better. I don't tolerate narcotics well, but a type and dose was found that works without turning my brain to mush. Thank goodness.

According to the thoracic surgeon, as of this morning I still may have an air leak. He's going to try clamping off the chest tube this evening to see how I do. In the morning I'll get another x-ray, and he will maybe remove the tube.

Today, my job is to walk around as much as possible, and to use the incentive spirometer ten times each hour. Patrick is being helpfully (?) anal about this, and has set a timer on his iPhone to remind me when it's time to use the thing again. Six minutes go by quicker than I thought...it's a lot of work.

I cannot breathe as deeply as I'd like to, yet. I walk slower than I'd like, but when I speed up, I can't pull in enough air to keep me going. I get light-headed and have to stop. I need to figure out the best pace.

I see the Wandering Priest everywhere I go. I accused him of following me, today. "I follow all my patients," was his reply. I wonder if he bi-locates?  ha ha

Preparing

I'm gearing up for follow-up #6.  Scans have been scheduled, flights booked, child-minders confirmed, and fingers crossed.

This quote was emailed by a dear friend.  It sums up pretty much my whole life:
Lord, help me not to take myself too seriously but to laugh readily at myself. Even my worst troubles have a ridiculous side.
from The Joyful Spirit of Padre Pio

St. Pio and I go way back.  His exhortation to "Pray and Don't Worry" is etched on my heart.

I'll update in a couple of weeks.  Thank you for your prayers!

Follow-Up #5 RESULTS

Earlier this week, by RECIST criteria, the target tumors in my lungs measured 46% smaller than they were pre-treatment. This puts me officially in the "partial responder" camp.  wooHOO!

I captured one image from the CT scan to post here, so you could get an idea of how "Target 3" is changing.  The white areas inside the blue oval are cancerous tissue--a nodule right next to my heart.  The darker areas within the tumor show that it is becoming less dense! (The white blob above the text in the image is a cross-section of a normal blood vessel.)

One tumor (not shown) still looks pretty gnarly on the CT, but it is in an area clouded by scar tissue, so it's difficult to determine what is what at that location.  All of the rest of the tumors seem to be breaking up, becoming hollow, or shrinking. No new tumors were seen, and my CEA level remained at 1.1 (same as in November).

Excitement!  Relief!  Gratitude!  HOPE!

Happy New Year

Yesterday we took down our Christmas tree.  I was dreading that event, not only because it involves a lot of mess, but because having a fresh, fragrant tree decorated in memories and multi-colored lights smack-dab in the center of our home is, to me, one of life's most glorious peculiarities.

I am happy that Christmas 2015 left a wake of joy behind--not at all like 2014.

On the very last day of 2014, I met with a Big Deal physician at a branch of a university hospital here in Michigan to get a second-opinion on my case, and to find out if that institution offered any clinical trials that might help me.

It was a frustrating visit. The doc seemed to contradict himself. He said that I was "extremely healthy", but also that I was suffering from "a disease for which there are no known therapies." He agreed that the National Institutes of Health would be "the best place" for me, but tempered that with, "The chances of getting into a trial there are about 2%."

Thanks for nothing, doc. One thing I've noticed--and this doc is not the only one who did this--is that once they realize my case is "terminal", I become invisible to them. Instead of talking to me, they talk about me. No longer are we making eye contact, though I try. Usually, the physician will turn toward my husband and start speaking to him. Maybe it's a coping mechanism. Maybe they aren't aware that they're doing it. I notice. I am not dead yet. Look me in the eye and you'll see...

I tried not to let this guy's comments and manner affect me. I'd rather hope for the best than expect the worst. Where there is life, there is hope!

At the end of this month, I'll be back at NIH for follow-up #5. Last visit, I met criteria for Partial Response, pending a confirmation scan.  Follow-up #5 will include that confirmation scan. Suspense takes on a new sort of gravity when it's your own story being written! I will let you know what the docs discover.