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.