Friday, September 18, 2015

Second Follow-Up part 2: Good News

Read Part 1 here.
Tuesday morning we got up bright and early to hopefully attend Mass at the National Shrine, which the website listed as happening at 7:30AM.  Unfortunately, when we got there, all of the entrances were blocked off.  We guessed it had something to do with Pope Francis' impending visit, but I can't say for sure.  The website says the shrine is open 365 days, so...hmmm.

We headed over to NIH to grab a coffee from Au Bon Pain (it may be French, but I think the letters p-a-i-n should be stricken from all signage at a hospital).  We sat in the open dining area on the ground floor, waiting for my CT images to be copied to CD.

We got our hands on the disk at 11:00 a.m. and headed to the Business Center to investigate.  The radiologist's report, which had been so encouraging last time, gave no new information this time.  My impression of it was, "Patient has a bunch of lung nodules.  Other organs OK."  The report contained no mention of the clinical trial at all.

Patrick loaded the images onto the computer and began measuring lung tumors while I compared his findings to the previous scan's data.  We had hoped that this time we might have trouble finding some of the smaller tumors because they had disappeared, but no.  They were all still there.

Some tumors, especially in the right lung, measured smaller this time.  Tumors in the left lung were a little harder to pin down, but it looked like there had been some shrinkage there, too.  RECIST criteria, which is what the researchers adhere to, dictate that the measurement is to be taken along the tumor's longest axis.

I was expecting to see big changes, like the ones we saw during the first follow-up, and so I was not sure what to make of the data we were gleaning.  I was glad that it was almost time to meet my doctor so that I could get his take on the situation.  To be honest, I went into the clinic feeling like a kicked puppy.

A nurse took my vitals, and weight, and showed us to an exam room.  Upon the doc's arrival, he brought us out to the hallway, to a giant computer monitor.  He pulled up three sets of images, one from March (prior to treatment), one from August (first follow-up) and the set from the previous day.  He showed us how the target tumors (four of the seven tumors are considered "targets" for the purposes of the study) were measured.  He confirmed that the tumors had decreased in size since the prior scans.

Back in the room, it wasn't sinking in.  My concern was that the rate of decrease had apparently slowed down.  It seemed like a bad sign.  The doc said that "everyone in this whole department is happy about these scans, except for, apparently you..."  He said that the tumors are at 25% reduction.  We talked about the difference between the first set of scans and this one.   Ever-so-slowly I was able to agree that what he was telling me was good news.

An attending physician joined us later, and happened to notice the plotting of data points related to the tumors' sizes that Patrick and I have done.  I explained my tumor-naming convention (which I admit is a little "out there").  At that point my doc commented on the "Nerd Level" in the room.  hahaha... When the attending physician asked, "Just what kind of engineers are you?"  My doctor piped up, "Circus. They are circus engineers."

Good one, Doc.

Later, The Guy (principle investigator) visited us in the exam room.  He said things like, "We could not have expected results any better than what we've seen."  He was smiling. A lot.


They want more scans in a month.  I'll be there.

Second Follow-Up part 1: Monday Testing

On Monday, Patrick and I drove once again to the National Institutes of Health (NIH) in Bethesda.  This time, we arrived more than an hour early and discovered that appointment times for the phlebotomy department are more like suggestions.  I checked in over an hour early, was given a plastic ID bracelet, and a deli-style ticket.  I was told to watch the wall-mounted monitor for my number to come up, which it did just a few minutes later.

I was ushered to "cubicle number one" where an older man kept repeating to himself and any passers-by (and there were many passers-by) that he had "Celine Dion" in his chair.  Confused workers would peek around the corner to see what the guy was talking about, only to find non-celebrity me sitting in the chair.  Extreme eye-rolling (mine) ensued. The fibbing phlebotomist filled twelve tubes with my non-celebrity blood, then sent me off for a urine sample while he affixed printed labels to all of the samples.  "Good-bye Miss Celine Dion," he sang as I dashed out of his cubicle.

My next appointment, a CT scan, was scheduled for a couple of hours later, but we had had such great luck with getting into phlebotomy early, that we decided to try it again with the scanning department.  We had the opposite of luck with them, and so we found ourselves with a couple of hours to wait.

Me:  Bummer.  Now what should we do?

Patrick:  Let's go say, "Hi," to < someone  on 3NW >

Me:  OK

Off we went to the third floor.  To my great surprise, my favorite nurse was there, off-duty.  We squealed like teenagers (or maybe it was just me, ha) at our reunion.  Three of the doctors who took care of me during the treatment were also there, so it was Big Fun for me to see them all again.

Next, a trip to the lab where Science lives. The Lab Guru gave us a fabulous tour of the various work-areas, even showing us the freezer where my very own T-cells are suspended in chilly, darkened, frozen-ness.  Of course, I waved and greeted them with, "Hi guys!"  The Lab Guru was very generous with his time, and thorough in his explanations, and always willing to answer our (many!) questions.  Amazing things happen in that place!

Back to the Imaging for my first scan.  I had to drink 800 ml of contrast (iohexol), then change into disposable scrubs.  To my delight, there was no delay this time; as soon as I exited the changing area, my name was called.  Soon after that I was sporting an I.V. in my left arm.  The scan was uneventful, and when I finished, the tech brought me to a door at the back of the room that led to my next destination:  MRI.  The tech thought it might be possible that I'd get in ahead of schedule.
Earlier in the day I was informed that my appointment time would be moved up two hours--hurray!  Now I appeared before the MRI receptionist with I.V. already placed, and donning the requisite scrubs, and asked if there was any chance they could take me early.  "There is a chance," she said, "depending on how scanner number six goes."

I sat down in the waiting area and texted Patrick my whereabouts.  He left then, to check into the hotel.  We expected this scan to take almost two hours since I was scheduled for scans of both the brain and the abdomen.  (Every-other visit the MRI scan will include images of the brain, otherwise, it's just the abdomen.)

I wasn't able to get in early but it was much better than my experience last time, when they were behind schedule.  The tech greeted me, and relieved me of my security badge, and my locker key.  I passed the "spin test" and he informed me that the scan would take, "about an hour".

Me:  About an hour?  Really?!  Last time it was close to two hours.
Him:  Yeah, well.  We're not messing around.  It'll be hour.
Me:  Woo!  That is good news.  I am starving.
Him:  Oh, you could've had something light.
Me:  I what?!  ...the paperwork said to fast for four hours.  Which fell during the time of my CT scan, for which I also had to fast for four hours.  Fasting makes me crabby!
Him:  Yeah, well.  Sometimes a full stomach can block some of the anatomy they're trying to see.  Also, some people get sick from the contrast and we were having to clean up some awfully big messes in here.
Me:  I see.  OK.  Well.  That's gross.

Onto the moveable bed-thingy I went.  The tech took my glasses, gave me some earplugs, and strapped what he called "coils" over me.  These coils are housed inside a piece of rigid plastic that (sort of) conforms to the shape of the body--each housing is curved, at any rate.  The contraption is about the size of a pillow case, but sort of grid-like, with "rungs", and open areas.  These were connected to the table by long Velcro straps.  One was strapped over my chest, and another across my abdomen.  He connected a long tube to the I.V. in my arm, placed headphones on me, and lowered a cage (another set of coils, I'm guessing) over my face.  He gave me a squeeze ball which I could use to request that the test be stopped "for any reason".  Finally, he did something no other MRI tech had ever done.  He flipped down a little mirror from somewhere over my head inside the machine, which allowed me to see a part of the wall behind me.  For some reason, the idea of the TARDIS entered my brain then, but even with my expanded field of vision, I could not describe the MRI machine as "bigger on the inside".

The test concluded in something like 80 minutes.  This meant that I could find food sooner than I expected!  I quickly texted Patrick that I was finished, and changed out of the scrubs and into my own clothes.

The building was mostly silent, as almost all of the workers had gone home long beforehand.  It was about 8:00 PM.  I wandered around, looking for the main entrance (I am so bad about navigating!!!) and finally found the revolving door where I waited for my dear husband to arrive.
We found a steakhouse and then settled into our hotel.  The next day we'd find out what--if anything--had happened to the tumors in my lungs.
part 2 here

Thursday, September 3, 2015

Clinical Trial Resources

Today marks exactly two years since the very bad day I heard the gastroenterologist frantically utter the horrible words, "It is most-likely cancer."

My husband, who accompanied me to the appointment, relayed later that the statement was the doctor's second attempt to break through my anesthesia-induced mental fuzziness. That may explain why I perceived his delivery as "frantic." I have no memory of what the doctor's initial words to me had been, or my response. Patrick reports that my first comment was, "That's not good news."

Master of Understatement, that's me!

The first year after diagnosis was spent mostly trying to not let chemotherapy kill me. I had an excellent medical oncologist, who was both thorough and compassionate, but I hated everything about chemotherapy.

The second year after diagnosis was spent discovering that chemotherapy hadn't cured me, and probably couldn't cure me. After that, I relentlessly pursued acceptance into a particular immunotherapy trial at NIH. Thankfully, I completed the treatment, and my first follow-up showed great promise. [First follow-up post here.]

As grueling as the trial sometimes was, it was fulfilling in a way that I can't completely describe. I felt that I was part of something bigger than myself; that my participation had merit, even though it was largely self-serving.

I'll be heading back to NIH soon for my second follow-up, hoping for success, and thanking God in advance, per Bl. Solanus Casey.

I feel lucky to have been given the chance to participate in the TIL trial, and I hope that my experience will help others who are facing a terminal diagnosis to consider participating in a clinical trial sooner rather than later. A patient's  health and youth will be two of their most important assets when enduring the rigors of a clinical trial. Many people think of clinical trials as the last possible resort, but it doesn't have to be that way.

Some resources, if you'd like to start investigating clinical trials:
COLONTOWN is a "virtual neighborhood" of pages related to colorectal cancer. Resources for care givers are included as well. I spend a lot of time there, answering questions and talking about clinical trials. NBC Nightly News did a feature story recently that may be found here. To register to join this online support community, go to You can find me in The CLINIC, which is where the newest trials are discussed.

FAQ about the TIL trial at NIH: Surgery Branch FAQ

Trial database for all cancers:

Colorectal cancer (CRC) clinical trials here:  Trial Finder

My friend Tom Marsilje's blog: Adventures In Living Terminally Optimistic