Follow-Up #20

Hello again!

I'm back with another report of NED--no evaluable disease. Huzzah!

On clinic rotation this time I met with Dr. Yang, who was the first-ever attending physician that I met at NIH. It was Dr. Yang who screened me for the TIL trial back in 2015. I often recollect his parting words of that day, "Mrs. Ryan, the stars really seem to be aligned for you." He was referring to the slow-growth of the tumors thus far, the fact that I had declined more chemotherapy after the first line failed, and that I had found the TIL trial at all.

At that time, I did not consider that my path to NIH was "aligned" in any way (they rejected me twice after all), but Dr. Yang's use of the word "stars" that day did make me remember the miracle of Our Lady of Guadalupe (the stars on her cloak match the constellations as they were when she appeared to Juan Diego). It was a comfort to me.

This clinic visit was a happy one! Though Dr. Yang wore a surgical mask* his smile was evident nonetheless. He decided that my next scans should happen in two years' time rather than annually. "After that," he said, "we'll discuss whether any more scans are necessary."

Imagine that!

Today marks the 8th anniversary of being declared NED. This is the day, eight years ago, that I woke up with one fewer lung lobes and zero cancerous tumors. I shall toast with a celebratory G&T this evening!

*NIH still requires masks in all "patient areas." Mask stations were in place at all reception areas, and we were expected to change to a fresh mask each time we entered a different patient area.

Follow-Up #15

Follow-up #15 happened at the end of February.
Still NED!

Earlier this month was the anniversary of the first-ever time I was clinically recognized to have "No Evaluable Disease". Three years ago, a thoracic surgeon at NIH removed the only remaining living cancer from my body. I remember waking up in the ICU disoriented, weak, and heavily-drugged, but more-importantly, cancer-free.

Cancer-free! I remain so today. To God be the glory, now and forever. Lord, never let me forget what good was done to me. I reiterate my deepest thanks to every person who worked on my case at the National Institutes of Health--what an outstanding facility--and to those who still follow up with me. I pray that many more lives will be saved by the work of those dedicated to solving cancer's mysteries.

To celebrate the anniversary, my former immunotherapy fellow--though separated by miles--and I each raised a glass "to NED." I toasted every NIH doctor and nurse that I could remember, starting with him. My glass emptied before I could name them all (even with small sips, haha).

New this week: Dr. Yang requested some blood. They now know how to build (for other patients) the particular HLA that successfully attacked the cancer that was threatening my life. Now they want to study the other five HLAs in my blood to see if any of them also recognize cancer mutations, particularly G12D. If so, they'll sequence those genes in order to add another "recipe" to their cancer-killing agents catalog. "We want to build a library of sorts," he said. To that end, a local phlebotomist drew some blood and then FedEx transported it to the NIH in Bethesda, Maryland. Go, Science!

I didn't want to post a picture of blood (gahh!), so here you go instead.

Three Year Celebratory cocktail

Follow-Up #13

My scans were all clear--no trace of cancer anywhere. Yes! Thank God.

Just for fun, I asked the attending when it would be OK to use the word, "cure." He laughed and asked if I had any other questions. ha ha

This visit, I was asked for my consent for NIH to do further research on my cells. They'll use cells that they already have for this, plus blood from the routine draws they do at each visit. I was relieved to know that apheresis was not required!

The attending physician explained that the scientists will be attempting to turn back the genetic clock on my cells, to see whether they can revert them to their earlier stem-cell "selves." I can't even imagine how this could happen, but according to my doctor, another researcher (outside of NIH) has already had some success with this. Exciting stuff!

Of course I gave my consent. I signed the papers, and my husband signed also, as a witness. It was an honor to do so. To God be the glory, now and forever!

Grateful

Welcome to the 100th post.
Today is the Feast Day of Our Lady of Guadalupe! I have a special devotion to Mary under that title. The words she spoke to Juan Diego in 1531 gave me courage in 2014, when I learned that chemo had failed me. "Do not fear this sickness...," she said to Juan, referring to his uncle. I believe those words are meant for all of us.

I am humbled and honestly a bit overwhelmed by the attention that is coming my way because of the recent article in the NEJM. Other outlets have picked up the story, and it has been a little crazy for the past couple of days.

I am thrilled for the scientists and other medical staff whose work has been recognized in this public way. My greatest hope is that they will continue to see more and more successes in immunotherapy. The men and women who worked on my case are much more deserving of the kindness and attention that I am now receiving--I was just trying to stay alive, as any one of us would do. The authors of the NEJM article--and many others who were not named--have my ongoing and deep respect. In truth they had it long before the results of my case were known to anyone--even them.

I am so grateful to everyone who prayed for me, and especially those who shared the story with others and asked them to pray, too. In the Christmas letter that I wrote in 2014, just after learning that my case was considered terminal, I wrote:

I joyfully anticipate the day when we'll all "be amazed and glorifying God", saying together, just as the evangelist recounted, “We have never seen anything like this.”  Mark 2:12

Our Lady of Guadalupe, pray for us.

Follow-up #9

My scans were good! The radiology report included the word, "unremarkable" a total of five times. That is a record number of times for me.

When a radiologist deems an organ "unremarkable" it means that no evidence of injury or disease is seen on the scan. It is one of those DoctorSpeak words that mean something completely different to the uninitiated.

Question: Who wants to be "unremarkable"

Answer: Cancer patients

Overshadowing this visit, sadly, was news that my friend and fellow cancer patient, D., had passed away suddenly. We had made plans to meet at NIH this week. Our visits overlapped, just as they had last winter. We were in contact weekly--often daily--for over a year. It didn't make sense. She was supposed to be visiting NIH for harvest surgery and scans...

Incomprehensible.

Consistent with the roller-coaster theme of this visit (the highs were as extreme as the lows) The Guy met with me at my clinic appointment. He confirmed that the New England Journal of Medicine will be publishing my case. He also told me that I am "an historic figure in medicine".

Incomprehensible.

Also this trip, I said good-bye to my dear Lab Guru. He has exhausted every extension that The Guy could arrange. I am confident that he will continue to do great things in his very own lab, just as he did during his time at NIH. I look forward to the opportunity to visit his new digs one day (and hopefully not for the purpose of apheresis).

Finally, a story of hope. Tonight, a friend on 3NW at NIH awaits her TIL with sheer joy (and maybe some fatigue after the conditioning chemo). It will happen soon! I pray she sees success. I believe that she will!

Follow-Up #8

We are home from another follow-up at NIH. It was all good news! The clinic meeting, for the first time, was boring. My scans showed nothing new, and nothing growing. I won't be scanned again for four months. Woo! I can live (literally, ha!) with boring follow-ups.

A highlight of this visit:  I got to meet a fellow patient who became a fast friend. I have high hopes for her, for great success with this trial. She's as curious (maybe moreso!) as I am about all things TIL, and our visit slipped away too quickly. We will meet again!

News:  The Lab Guru has submitted an article about my case to a journal. I hope to have more news on that later.

Another highlight: Visiting with my Top 3. Two docs, and a nurse. So happy they were all available!

If you're interested in enrolling in the TIL trial, the link is here.
A recent post on how cell therapy works is here.

Under "Highlights" on the right side bar, you'll find a link labeled "Key Posts" which can serve as a short-cut to navigating the blog for particular steps in my cancer Riot.

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 into...me (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!

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!

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

From ICU to Regular Room and NED!

After surgery, I spent some time in the ICU, a place I had never been before.  It reminds me of a refrigerator, in a way.  It was chilly, and there were a lot of stainless steel surfaces... My memories are a bit jumbled, so I'm not sure if these events happened in the order I've recorded them here.

My first memory upon waking up after surgery is of a male nurse talking about "the pain". "She doesn't have that excruciating shoulder pain they always have.  That's a real blessing."  I wondered how he knew about my level of pain.  Maybe I had heard him wrong? Did he say, "scar"...I was confused. He could have said, "She doesn't have that huge scar that people sometimes do..." My left shoulder hurt, and it hurt a lot to breathe due to the chest tube that was (and still is) wedged into my side.  Someone took a chest x-ray while I sat up in the bed.  I only remember that it was a herculean effort to sit upright to facilitate the process.

Breathing hurt. The thoracic surgeon stopped at my bedside and said that the surgery had gone well. He had removed the entire lower left lobe of my lung. The lung was taken directly to the Lab Guru. Pathology would have to wait, because "those immunotherapy guys", as he called my doctors, were adamant that the specimen go to them first. I was beyond thankful to have the tumor gone. ...glad to be awake and alive.

The bed had a balloon-like mattress. I struggled to think. I hurt. I remember opening my eyes--and wishing I had my glasses. Some fuzzy, tall somebody was at the front of the room--a man, washing his hands. Was it a doctor? There was no lab coat. When he turned around I recognized that it was my fellow. Relief. Only then did I realize how scrunched up my face had become from the pain, because as recognition dawned, the tension eased away.

My doctor said something like, "Those meds really take a lot out of you..." to which I muttered, "It's temporary?" "Yes," he said, "It's temporary." I drifted off again.

The next thing I knew, the male nurse was explaining the controller for the PCA (patient-controlled analgesia).  I think it was delivering dilaudid.  I could push the button as often as once every ten minutes, he had said.  The machine would beep twice if it was dosing, or once if I had pushed the button too soon.

The sliding "refrigerator" doors opened again, and in walked an attending physician. This was the doctor who, along with my fellow, had cared for me while I underwent the protocol in July. I hadn't seen him in many months, and was a little alarmed at his presence now. Bedside manner had not been his strong suit, but he did have my respect for other reasons. I couldn't figure out why he would be visiting me. We stumbled through a brief exchange of some sort, then he very deliberately picked up the PCA and clicked the button. "Be sure you use that," he said as he returned the clicker to its former resting spot. Then he left without another word.

The ICU was sterile in appearance and in fact. It was very, very quiet. I had trouble thinking but didn't know whether it was from the pain or the pain meds.

I slept in a half-sitting position. I faced a wall clock, and I woke up almost every hour. Blood pressure measurements were being taken automatically, and the noise the machine made as it sprung into action woke me time and again. I checked the clock each time I woke to see that an hour had passed in what felt like only seconds to me. The clock might as well have been a toy; time had no meaning. I wasn't sure if it was day or night.

Later, a male nurse offered me a bath. I could imagine nothing more absurd at that moment. I wanted to snark, "Are you freaking kidding me right now?" but didn't. I only said in a surprisingly feeble voice, "No. I don't want that." There was no mention of it again. My ears were ringing, and my vision was jumpy. I decided to hit the PCA button less frequently. The nurse helped me get to a chair--this was his idea; not mine. I was content to stay in the bed, but I hobbled very gingerly to the recliner. I was given a welcome cup of ice chips, and later a lemon ice. I noticed that I had two I.V.s, and several new bruises and needle marks on my arms.

Next, they wanted me to have a "proper" x-ray.  This meant traveling to the radiology department.  I was connected to all manner of tubes and wires that seemed to be just everywhere. The nurse somehow got me into a wheelchair amidst the tangles of equipment, and we began the seemingly long journey to x-ray. I could barely stand, so they did the imaging with me sitting on a stool. Two views: side, and front. Then back to ICU.

I tried very hard to make the incentive spirometer move. I could only pull the bare minimum (250 ml) at first, incredibly slowly, and not without a great deal of pain. I kept at it. I knew there were some who were dubious about my refusal of an epidural, but I did not regret my choice. Had I consented to the epidural, they now said, recovery would go faster and with less pain. "It's too late now," I said. The idea of a catheter in my spine was too invasive, too dangerous, too nauseating to me. I remember being relieved that the anesthesiologist had not questioned my choice, but had instead said, "We have other options..."

Each time a new person entered the ICU, they'd tell me that I was going to be moved "to a regular floor" later that day. I'd ask, "Which floor? 3NW?" Always the reply came, "We don't know yet." I really, really did not want to go back to the lymphoma wing.

Then a nurse loaded me, with all of my tubes and wires, into a wheelchair.  As we slowly moved out of the ICU, and down the hall she triumphantly announced, "We're going to 3NW!"

"Hurrayyyyyyyyyyyyyy! That is The.Best.News!!!" I (feebly) fist-pumped the air, and thought that I couldn't be any happier. She wheeled me down a passage where my fellow and some others were eating lunch. The Lab Guru saw us first. He stood as my wheelchair approached, and broke into a huge grin. My fellow turned to see what had got the Guru's attention. "They're taking me 'home' to 3NW!" I babbled, "I'm so happy!" My fellow joked about sending me to a room in the basement instead. ha ha...

This was one of the best days of my life, on par with the days that I heard, "Will you marry me?", and "Meet your new baby." This is the day that my doctor had said would render me--for the first time, ever--NED, no evaluable disease. I was floating.

Scratch That

Needle biopsy will not be happening.  Instead, surgery is on the agenda for me.  Next week.

A thoracic surgeon is going to remove the recalcitrant tumor for the purpose of developing a new TIL treatment.  I don't have any details yet.  I'm saving my questions for when I'm back at NIH, and out of ear-shot of certain little people.

What I do know is that I've got some pre-surgical tests in store: EKG, echocardiogram, PET scan, and a lung function test.  I think, aside from cancer, that I am healthy otherwise, so these should not be a roadblock to surgery.

I'm very curious to know what the lab will find when they study this tumor!  Mostly though, I will be glad to know that it's no longer trying to kill me.

Stupid cancer.

Follow-Up #6: A Bump in the Road

I am now almost nine months out from "cell day", July 1, 2015.  This week, I met with the docs at NIH for my sixth follow-up.

While the results were mostly good, the one tumor that showed up "hot" on PET in October is now very obviously growing.  Of seven tumors scattered across my lungs, only this one seems to have not gotten the message that it's time to bounce!

Why did this one tumor not respond to therapy?  That's what we hope to discover.  My next visit to NIH will (we think) include a procedure by an interventionist radiologist.  Though a needle biopsy is theoretically the least invasive means to obtain a tissue sample, my last experience with an I.R. was less than pleasant. By a lot.  I have some mental hurdles to overcome before my return to the operating room.

Once the scientists have a sample of the rogue tumor, they'll test it for mutations.  If a couple of parameters are met concerning the properties of the tissue sample, a cell therapy may already be available for me.  I would undergo the preparatory seven days of chemo, like last time, and then have a different population of cells returned to me.  This population of cells was "Set B" from my prior lung wedge surgery.  "Set A" were the cells they ended up returning to me in July, but these other cells also reacted to the KRAS G12D mutation.  They could potentially be just the ticket for getting this final tumor to start shrinking away.

It is possible that the tumor does not have the two properties we're looking for.  In that case, we will have to discuss what the next steps should be.  Way-smart medical types are already contemplating all of this, and though I have some inkling of what could be next, I can't address that yet.

It was an emotionally draining day in the clinic (!), but it was encouraging, too.  It was far from the worst news I could've heard.  My over-arching thought is: There must be More to Learn from my case, and that is a pretty great thing.

Other results:  The rest of the tumors remain stable.  By RECIST, I'm still at 46% reduction from baseline.  No new tumors were seen.  TIL therapy is working, at least partially.  For that I am excited, and grateful, and ever-more hopeful that it will work for me a second time.

If you pray, please pray especially for the team of doctors and scientists connected to my case.  Pray for revelation to complement the determination they already possess.  Pray that they do their best work. Pray that I, and they will cooperate with Divine Grace for the outcome that God wills.

Whew.  That's a lot of prayers.  THANK YOU!

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!

Clinical Trial, Try 3

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.
...
I 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.