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.

Sneaky Tumor

Breaking News!
The Lab Guru shared some stunning information about the non-responding, sneaky tumor that was surgically removed three months ago. After analyzing it, he now knows how that tumor progressed in spite of TIL therapy! His work was published in the NEJM (see link below).

It may be helpful to understand how immunotherapy did work to kill many tumors.
Disclaimer 1: I am neither a doctor nor a scientist.
Disclaimer 2: What follows is my understanding of the details of my own case.

Many Thanks to the brilliant doctors and scientists at the NIH who answered loads of questions at virtually every visit (and between times, too!) with patience and competence.

What worked:
Six tumors in my lungs are now dead, dead, all the way dead. (Update 6 years later: my scans show no remnant of any tumor.) They were killed by my immune system! Killer T-cells infiltrated the tumors to seek and destroy cells that harbored the baddest bad guy. This was possible in part because I inherited a hero HLA allele. It makes a particular protein molecule that worked in concert with killer T-cells to eliminate almost every tumor. HLA has the ability to mark cells that are "broken." Its job is to grab stuff from inside cells, bind it, and then present that stuff outside, on the cell surface.

More on the good guys, later! The villain in my case is a mutation to a gene called KRAS (KAY rass). Pieces (called "peptides") of mutated KRAS proteins are the stuff that my HLA binded with to mark my tumor cells for destruction. KRAS is vital to our cells, but mutations in this gene can lead to cancer.

Killer T-cells can't peer inside a cancer cell (or any other kind) to see what's going on there, but the HLA lives there. If a cell becomes deranged, as happens in cancer, HLA will grab its evidence (the mutated peptide) that something is way wrong, and thrust it outside the cell while still holding it in its grasp. This is the only way that a killer T-cell can sense its target; it must be bound to an HLA molecule on the surface of a cell.

Hundreds of types of HLA alleles exist, but each person inherits only a few. Each type creates a molecule that has a unique binding surface. Think of molecule-sized Lego bricks--if the peptide can snap together with the HLA molecule, the two form a complex. When this happens, the peptide gets swiftly escorted to the surface, and the courier (HLA) announces to the world outside the cell, "Look what I found!"

Unlike Lego bricks, not all peptides will fit with an HLA molecule. But, happily, it was found that for the mutation that I had, and the HLA type that I inherited, the two did fit together and HLA was able to bind the criminal and set it up for possible detection (and execution!) by my immune system.

Another layer of complexity:
Note the use of the term "possible detection" above. Just because the tumor cell, thanks to HLA, had the ability to present the mutation to my immune system, it was no guarantee that my immune system could recognize that mutation. Killer T-cells are the immune system's soldiers, but they are highly specific in what they "see." Most types, it seems, are blind and deaf to cancer cells, even when HLA is doing its best to let the T-cells know there is a problem. Why?

Each T-cell type is capable of recognizing only one particular antigen (bad guy), which is often referred to as its "target." T-cells sense their target with receptors (TCRs). These receptors are the embodiment of programmed randomness. Our bone marrow churns out millions of T-cells in our lifetimes, each equipped with unique TCRs that are constructed (as far as we know) at random in order to comprise a host of potential future armies against an equally stunning array of potential onslaughts. Each TCR is highly specific to its target and to no other. Because TCRs are so hyper-focused, we need lots and lots of varieties of them if we are to remain safe from the constant threat of incalculable numbers of viruses, bacteria, and even cancer cells. Lucky for me (understatement!) my body produces a few different types of  T-cells whose target is the baddest bad guy (KRAS G12D), and I inherited an HLA type (C*08:02) that has the ability to show that bad guy to the killer T-cell.  

When the killer T-cell connects with its target, the HLA-bound mutant peptide, it sends a signal to the tumor cell to self-destruct! Also, when a T-cell finds its target, it replicates itself and can go on to find and kill more tumor cells. Thanks to the Lab Guru's expertise, he was able to expand 30 million of my mutation-specific T-cells to 148 billion. These are the cells that comprised my TIL therapy. These are the cells that killed six known tumors in my lungs. Perhaps even more astounding: These are the cells that are still circulating in my system, keeping the KRAS G12D mutation from causing any more tumors for (I pray) the rest of my life.

Tumors are a collection of cells that have lost at least one important capacity that normal cells have--the ability to die. As tumors change over time, mutations accumulate. Tumors can evolve in ways that give them an advantage over the immune system. That is exactly what happened in the case of the one tumor that progressed even after TIL therapy. That tumor's cells developed an advantage that allowed them to escape detection.

What the Lab Guru discovered about the recalcitrant tumor is that it was missing one copy--healthy cells have a pair--of Chromosome 6. Chromosome 6 is where the HLA genes live! Since one copy of the chromosome was still present, it must mean that the hero HLA allele resided on the copy of the chromosome that went missing from the progressing tumor's cells. The other chromosome of the pair was a different allele; one that doesn't recognize the mutation, and so the sneaky tumor left it alone.

The Sneaky Tumor's Game:
Any tumor cell that was absent the hero HLA was essentially cloaked from my immune system. The killer T-cells could no longer sense their target (even though it was still present) because the hero HLA--the thing with the ability to display the bad guy--was gone! Any cells that were missing that particular Chromosome 6 (either the one from Mom, or the one from Dad) now had an advantage that would help them survive. When they multiplied, those new cancer cells, too, were missing a copy of Chromosome 6. Killer T-cells wouldn't kill those cells, because without the HLA complex to shout, "Look here!" the T-cells passed on by as if those tumor cells were normal, healthy cells.

I can only echo the Psalmist who wrote:

I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well.
Psalm 139:14 NASB

The End, A Surgeon's Knife:
Similar to the way cancer didn't eliminate just the gene that threatened it but the entire chromosome the gene resided on, my surgeon didn't just excise the sneaky tumor--he removed the entire lung lobe it resided in. It was a medical necessity to remove the entire lobe, but also something more: Poetic Justice.

Links to media:
Read the Lab Guru's article for the NEJM
Three newspaper reporters interviewed me for articles:
New York Times
Wall Street Journal
Philadelphia Inquirer
Joan Lunden interviewed The Guy and me for the Today Show.
Sneak peak for that story on FaceBook here.
Tom Marsilje's blog about my case.

Milestone

Last Friday was the anniversary of "Cell Day". I sent my husband out for a Pepperidge Farm Chocolate Cake just like the one they gave me on the day of the transfusion.

On Sunday we packed up the kids and headed for Frankenmuth, where I was registered to participate in a 5K Walk. That evening, I raised a glass to toast my esteemed immunotherapy fellow, who soon would be turning over my case to someone else. I chose a drink that he likes best. (This was less of a sacrifice than I was expecting!)

We watched fireworks with our kids, and some dear friends. Our youngest was enthralled by the spectacular explosions and declared his appreciation (loudly) after almost every round. As the smoke from the finale cleared, he announced in the darkness of the night that it had been "the best day of (his) life".

The 5K took place the following morning. I was nervous! It seemed to me that all of my health problems began after I ran a 5K in 2011.

Maybe 5K races are bad luck!

My oldest daughter and my husband accompanied me. They kept me to a challenging-enough pace for me, but one slow enough for them to chat effortlessly with each other. Neuropathy in my feet (from stupid FOLFOX) caused some pain, and my lungs...well, they did OK. I wasn't breathing like I felt I needed (wanted) to, but I was breathing adequately, apparently. I could not chat! My lungs would let me walk, or talk, but not both. We walked at about 3.5 mi/h and I finished in 51 minutes.

In movies sometimes a dramatic moment is depicted as happening in slow-motion. That is what happened to me at the finish line. In slow-motion, I saw my foot hit the mark, and it felt like a literal weight had lifted. I could almost hear the woosh as it flew off my shoulders. I've never experienced anything like it before.

When I crossed over the finish line, it felt like a new beginning.

Remembering

Tonight, which is Father's Day in the U.S., we attended the graduation party of the son of dear friends. Last year, also on Father's Day, we attended a graduation party hosted by other dear friends. The difference is that after last year's party, Patrick and I headed straight to the airport. I would be inpatient at NIH starting that night for what would be a nearly month-long stay.

"No tears! No tears!" my friend had said as we left the party. She waved her hands in front of her eyes to keep them away. I did the same. We hugged and I almost made it out of there without crying. Then another friend joined us and I crumpled into a teary mess. We hugged as we cried. They promised me their prayers as I left the building.

My friend's husband called to me just as I reached the parking lot. "Come back! I didn't get to say good-bye!" I did, and cried some more. He promised to send me excruciatingly bad puns every day that I was away (and he did!). I told him that I loved his wife, and he said, "I do too!" and we laughed.

I got into the car then, and stared out the window, still crying. I have never felt so torn as I did that day, leaving my family and friends. Not only was I leaving the kids; I was also taking their Dad away. I felt tremendous guilt over that until I tried seeing the situation from his perspective. In his mind, being with me for as long as he could manage it was his duty, especially since the kids would have adult care-givers. "I have to take care of you," are the words he repeated so often, and always in a way that communicated, "I want to take care of you." He is a gift.

I thought about the risk involved in the clinical trial. I knew beyond a shadow of a doubt that this was my best option, but it made me sad to think that "coming back" might not be a part of this equation. I accepted the uncertainty, but I had to push thoughts of who I was leaving behind out of my mind and try to focus on what lie ahead.

A few days prior, Patrick and I had met with a lawyer to finally get a will in place. This was something we had planned on doing right after our wedding, but never did. As the years went by, one or the other of us would mention something like, "We should really make a will..." but that's as far as it went--just a suggestion. This time was different. This time the gravity of my health urgently demanded that we take action. Surprisingly, none of those preparations made me feel sad; instead I had a sense of well-being.

Driving away from that party though--that was hard.

By the time we arrived at the NIH that evening, it was pretty late. I met the night nurse, who smiled a lot and made sure every single thing was in order. She asked a bunch of questions, explained some of the mortifying practices I'd have to endure, and assured me that I would be well-cared for. Patrick left for the night. I tried to settle in. I had a big room facing the courtyard. I would have no roommate, unlike my previous visit. This was by design. Sharing a room could lead to sharing germs, and that is too big a risk for a neutropenic patient (which is what I'd be once the chemo did its thing).

It was Sunday, and the on-call immunotherapy fellow that night was the one who'd been assigned to my case from the beginning. I found this doctor to be a man of few words, but I was very happy to see a familiar face. I wished him a "Happy Father's Day", and asked how long he would remain on the service. I knew that the fellows were about to rotate out. He assured me that he'd be there on Cell Day. "What's the new guy like?" I wanted to know. He told me his name and instantly brightened. "You'll like him. He's a good guy." I knew that this was the extent of the information I'd be getting from him on that topic. I was uneasy with the knowledge that the one doctor that I was familiar with would be leaving so soon after I arrived. We discussed upcoming events briefly then said good-night.

Then--just as tonight--it was well past midnight by the time I got to bed. I was excited about finally being there, and almost couldn't believe that it was really happening. Monday morning would start early with scans and other procedures. I was on a carefully planned protocol now. I prayed that every step of the way would go as well as it possibly could.

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!

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!

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

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.

Exiled

Greetings from my hospital room at NIH.  I've been placed (temporarily, I hope) at the lymphoma wing, due to lack of available beds on the immunotherapy ward.

It's lonely over here.

Today, I am scheduled for surgery.  I met the thoracic surgeon yesterday, and we discussed the very real possibility that he will remove the entire lower left lobe of my lung.  Regardless of  how much he ends up taking, I'm guaranteed to wake up with a chest tube.  I am sort of dreading that (not the waking up part, haha).

I'm "in my head" this visit, and not adequately equipped to articulate my thoughts.  I am relying on the knowledge and belief that Grace is given in time and measure according to my need of it.  I am working on re-framing this episode as one of restoring health, rather than focusing on what needs to happen to get there.

I had a visit from the Lab Guru on my first night here.  That was a most-welcome surprise.  He told me that he found four different T cell receptors (TCRs) in my blood that all react to KRAS G12D.  I had heard previously that it was three types, which was pretty stunning.  Four seems even better.  He explained how the fourth one is "very particular" about what it recognizes, and I just sat there listening in utter wonder at how cleverly our immune systems were designed.  He also said that the cells are persisting at a relatively high level, even seven months out, which he thinks is a good sign.  That was the good news.

The bad news is that, since I do have a tumor that is now growing, my case can no longer be described as "Partial Response".  Instead, I've moved to the ultra-depressing category of "Progressive Disease".  It does not change the fact that six of seven tumors have responded (and continue to do so), however, so I need to "get over" the whole labeling thing.  I was never a fan of RECIST criteria, but it's the tool the oncology world uses, so I'm stuck with it.

Today I will have surgery.

I hear, outside my door, the sounds of the Medical Oncology ward waking up:  voices, wheeled carts bumping through the hallway, and doors opening and closing.

I hope that when I awake from surgery, I'll be greeted with the news that I won't be returning to this room, or this wing. My fellow assured me that "they" are doing what they can. He joked that it is "far too long a walk" for him to make in order to do his rounds. "Yeah, we've gotta get you back where you belong," he said.

I couldn't agree more.

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!

Visit #5 Silliness

The first blizzard of 2016 to hit the Washington D.C. area dumped 29.2" at the airport we hoped to fly into.  All flights were cancelled on the weekend leading up to my appointment (on Monday) at NIH.  Happily, by Monday morning the snow had stopped, and the airport had been plowed.  Our plane landed at BWI just a few minutes past its scheduled time.

We knew something was up when we reached the rental-car desk.  We were the only customers in sight.  "Maybe it's an early Monday thing," we thought to ourselves.  No.  It was a "snow" thing.  When we got onto the beltway, heading to the hospital, we had the entire highway almost all to ourselves.  This was a first!  Lanes were sometimes disappearing into snowbanks, but the areas that had been plowed were clear and dry.  "What's the problem?" we wondered.

We found out later that the problem is snow removal, or to be more accurate:  poorly managed snow removal.  I will spare you my ranting on this subject, except to say:  A little training could go a long way.

At phlebotomy, I took a number, as usual.  What was not usual is that the automated voice that alerts the next patient to come forward was announcing my number even as I was taking the ticket from the tech.  That's service!  When I confirmed what I was hearing by glancing up at the digital monitor attached high up on the wall, I was surprised to see the screen blank, except for one number.  Mine.  This never happens.  Usually the screen is filled with numbers; the waiting room full of people.  Not today.  Today, the hospital was a ghost-town.

Off I went to cubicle #1.  Guess who was waiting for me there?  It was the Celine Dion fan himself.  Of course it was.  I was ready for him this time, though.  I answered all of his questions in song.  haha, no I didn't.  That would be crazy.  I just spoke in French.  (I am lying.  I only know swear words in French.)

Later on, we decided to head over to the CT area to see if they would take me early.  I walked up to the desk.  The waiting area was almost empty.

Me:  Hi.  I'm a little early.  My appointment isn't for another 30 minutes.  I was wondering if you could take me early.

Tech [calling up my record on her monitor]:  OK.  Um.  See.  (furrowed brows) Your appointment has been cancelled.

Me:  Cancelled?!  Does it say why?

Sleen's Brain in a split-second:  OMG.  There is only one reason they would cancel my scan.  I'm pregnant!  Whaaaaat??!?!!!  omgiampregnant wait. no.  AAAAACK!  couldibepregnant?!?  What will Pat say?  What will the doctors say?  ohhhhhhhhhhhhhh.my.goodness.

Tech:  No, it doesn't say why.  They've rescheduled you for tomorrow.

Sleen's Brain:  OK...OK...OK.  I'm not pregnant then (virtual collapse onto the floor) But...tomorrow?!  This is a Big Deal scan.  The one that will confirm my response to the treatment!  If I don't get scanned until tomorrow, then there is no way I'll get the images before I meet the doctors in clinic and I'll have to hear the news first-hand from them.  I can't take that kind of suspense.  I will have to stalk my doctor and watch him as he reviews the scan.  He won't allow that.  I'm doomed!

Tech:  Well.  Ima going to get you in now, since you're here.  Have a seat.

I've never been so happy to drink contrast as I was just then.

It turns out that the rescheduling was due to the snow.  Snow.  Not pregnancy.  Just snow.  Way to give a cancer patient a heart-attack.

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.