Team Kennett

Novartis Clinical Trial Protocol 11-007:  Phase I, Multicenter, open-label dose escalation study of LDK378, administered orally in adult patients with tumors characterized by genetic abnormalities in anaplastic lymphoma kinase (ALK)

Cycle 1, Day 1 (March 28)

5:00 AM:  “It’s wake up time” as Joe would say.  I don’t really do 5 AM, but it wasn’t very hard waking up this morning.

6:17 AM:  Departed the Hampton Inn in Central Philadelphia.  I did manage to grab a cup of coffee and cold pastry in the lobby while waiting on our car.  The pastry was so gross I pitched it in the trash after one bite.  It’s really just as well, because Chip can’t eat, and I always try not to eat in front of him on days like this.

6:53 AM:  Arrived at Fox Chase Cancer Center

7:15 AM:  Vitals recorded, 1st blood draw of the day and urine sample collected.  Chip finished reading Francona:  The Red Sox Years that Calabro sent him while we waited on his labs to return while I got caught up on e-mails and texts.

9:00 AM:  Visit from the oncologist’s nurse who is managing our trial.  She walked us through our upcoming schedule, so of course the “scheduler” in me had my FDP out trying to figure out who can fly up or down when to stay with Joe and Crosby.  We have to be here the next three weeks in a row and three out of five weeks in May.  I see many fun Wednesday night dates in our future!

9:15 AM:  EKG and 2nd blood draw

9:26 AM:  Chip swallowed his first dose of five LDK capsules.  Yeah!!  I’m starving though.  Being a supportive wife isn’t always easy.

10:26 AM:  3rd blood draw

10:43 AM:  Chip just fell asleep so I scarfed down a cup of warm yogurt I swiped off the Hampton Inn breakfast buffet and stashed away in my purse.

11:26 AM:  4th blood draw.  Now Chip can finally eat.  Yeah!!

11:52 AM:  Nasty ass lunch in the cafeteria and quick call to Mom and Dad to check on the kids.  One might think you would be able to find healthy, nourishing food in a hospital of all places, but it’s exactly the opposite.  The caf’s offerings included hamburgers, hot dogs, pizzas, onion rings, etc., but not the delicious ones you find at a ballpark.  It was nasty 1 1/2″ thick crust cafeteria-style pizza.  If you are going to cheat, you at least want it to be with delicious and quality badness.  Maybe that will become my mission in life–to promote nutrient-rich entrees and install juice bars in hospitals and cancer centers so their food can compliment the healing powers of the medicine.

1:05 PM:  Back to our curtained room in the clinical trial unit.  Chip is really cold and tired but feeling fine otherwise.

1:26 PM:  Blood pressure and temperature check, 2nd EKG and 5th blood draw

2:14 PM:  Chip is getting cranky.  I told him he better be nice to me if he wanted a ride back to the hotel tonight.  Usually I would flash him to boost his morale, but it was SO cold in there.  The flashing will just have to wait.

2:43 PM:  Reading the March issue of Harper’s Bazaar while Chip watches The Fugitive.  Just ate a peanut butter and jelly Lara bar.  It was pretty gross, but I just tried to focus on the fact the wrapper promised to “lift my vitality and provide energy with every bite.”  Nom, nom.

3:01 PM:

Me.  “It’s really boring watching you get treated for cancer.”
Chip.  “Thanks.”

3:15 PM:

Chip.  “What are you doing over there?”
Me.  “Nothing.  Killing time.”
Chip.  “Don’t you get snippy with me.”
Me.  “I will get snippy!  My butt is going numb from sitting in this chair while you are over there in a recliner!”
Chip.  “I’ll trade you a recliner for cancer.  Well, actually, I wouldn’t give you cancer.”
Me.  “Thanks.”

3:26 PM:  Blood pressure check and 6th blood draw

4:02 PM:

Chip.  “You are sucking the fun out of this room.  Will you please just go for a walk?”
Me.  “No, that would be the cancer.  I AM fun.”
Chip.  “Good point.”
Me.  “I am full of good points.  Will you please turn the tv down?  I would hate to get kicked out of here.”
Chip.  “Now that would be some shit, wouldn’t it?”

4:26 PM:  One more hour to go.  We are absolutely delirious at this point, but we can do it.

5:00 PM:  Finished my magazine and now ready for spring.  Structured blouses in, jackets out.  This is not good for me.  Pajama-wide or skinny pants in.  Check.  Can rock both of these.  Geometric prints, arts & crafts, textured fabrics and neon snake skin.  Check, check.  Ruffles in.  Can do.  Also learned my haircut is in style so glad to have that going for me.  Also banged out a few thank you notes for baby gifts to Crosby.

5:26 PM:  Final EKG and blood draw of the day.  PTL!!  We made it.  Let’s blow this pop stand.

Me.  “Good work today.  We make having cancer fun.”
Chip.  “Well, I don’t know I’d go that far, but I see what you are trying to get at.”

6:15 PM:  Returned to hotel

6:45 PM:  Chip was feeling well, not coughing much, had an appetite, wasn’t experiencing any nausea, and we both wanted to move and get some fresh air after being cooped up inside of our curtained room all day long, so we decided to walk the 1 1/4 miles to dinner.

7:20 PM:  Celebratory sushi and sake at Fat Salmon

9:00 PM:  Walked back to hotel and grabbed a few Philly pretzels out of the lobby to take home with us, and it’s soon to be lights out.

It’s been a long but good, good day for us.  We are just as happy as can be tonight that we are finally fighting back again.  The stronger the cancer gets, Team Kennett just manages to get even stronger.

We report back to FCCC at 9:00 AM tomorrow.  They will check all of Chip’s vitals, repeat the EKG, draw blood, administer his second dose of LDK and send us home until this time next week.

We got this.

On Monday, January 7th, Chip and I headed back to Johns Hopkins University for a check-up, where we learned the results of his MRI and PET/CT scan.  The Saturday before, Smitty and another friend from both home and Colby, Trevor MacDonald, flew in to visit, distract Chip and accompany us to our appointment.  Chip and I both love Smitty, and he is always welcome in our home, but boy, his flying back in for this big appointment was like deja vu.  It took us back to two months earlier when Smitty had flown in to be with us when we received Chip’s pathology results from Dr. D and prognosis and treatment options from a couple of oncologists.  For days leading up to this pivotal appointment, even though we were both optimistic and hopeful for positive results, we were also very emotional, nervous, on edge, overwhelmed, and flat out scared of what we might learn.

The fact that Chip had a horrible cough for three weeks prior didn’t really help things either.  We both do a pretty damn good job of remaining positive, but when you have Stage IV lung cancer and then develop a horrible cough, it plays with your mind.  If I have a cough, then I simply have a cough, but if Chip has one, it’s suddenly THE CANCER!  Every time he would cough, it was a constant reminder to him and just made me cringe.  Not being able to deal with the uncertainty any longer, Chip paid a visit to our beloved Dr. D.  Luckily, a chest x-ray revealed he just had a nasty ol’ cough, so we were relieved she was able to put our minds at ease a bit.

After a long weekend, the big day finally rolled around, and we all made the drive to Baltimore.  One of the first things we learned was Virginia Hospital Center had sent Dr. B a copy of the report written by their radiologist … but had failed to send the actual scans themselves. So the radiologists at JHU had nothing to read, and therefore couldn’t compare the second set of scans to the first, and Dr. B couldn’t tell us anything more than what she knew – which was things had improved.

Mistakes happen.  I get it.  I do, but we were so keyed up for this appointment and all we were really learning were things had improved??  Now don’t get me wrong, improved is a pretty awesome word.  Improved is much better than worsened or stabilized but seriously, had we improved a little bit or a lot?  On a scale of 1-10, where were we on the improvement scale?  Had we improved way more than anticipated or not so much?  Improved.  I wanted numbers.  I wanted to know that this particular tumor had shrunk from this to that.  I wanted specifics.  I wanted mother. fucking. details.

The appointment itself was … well, it was pretty underwhelming to say the least.

On our drive home, Chip called Dr. D to see if she, as our coordinating physician, had a copy of the scan results and could tell us anything more.  Well, God bless that woman, she did.  She asked if I was in the car, too, so Chip put her on speaker, Smitty pulled over on the side of the road, and Dr. D started telling us what we had so longed to hear:

The spot in Chip’s liver isn’t showing up at all, the tumors in his lymph nodes have stabilized, the tumors in his lungs have shrunk in size and the cells aren’t as active, the spots in his bones are simply showing up as a sclerosis–what one might see after a broken bone has healed, and the tumor in his eye had shown the least amount of progress but had still shrunk from 10 mm to 8 mm.  

She described the results as being incredibly awesome and the best we could have hoped for.  I hate to sell Smitty and Trevor out, but there wasn’t a dry eye in the car.  Dr. D reminded us cancer is a terrible disease, Chip’s diagnosis was horrible, and the drug he was taking was very new but this day was a VICTORY for Team Kennett and to go home and celebrate.  PTL!!  

But celebrate we did not.  We were both hugely relieved, but neither of us could find the joy in our victory that night.  To steal one from my Mom, Lady Linda, we were both just “physically and emotionally drained.”  I actually fell asleep on top of the bed like a kid who had just returned from a day spent at the Mid-South Fair, with my clothes still on and without having brushed my teeth or washed my face.  I still didn’t feel joy the next day.  Or the next.  I simply felt emotionless and drained.  Chip and I both kept asking each other why we weren’t any happier than we were.  It turns out we had both, unconsciously, built these protective walls around ourselves in case the results were bad.  We were not going to allow any negative news to fully penetrate or affect us, but likewise, the incredibly awesome news didn’t penetrate that wall either.

It has taken me awhile to be able to write about this, because I am a very deliberative person, and some may argue with me here, but I do actually think before I speak.  Chip and I have been on such an emotional roller coaster over the past ten weeks that I had to wait for this particular ride to slow down and come to an eventual stop before I could open up about it.  And ten weeks?  Holy shit, it’s been a long ten weeks.  SO much has happened in the last ten weeks that it’s still hard to take it all in.  Sometimes I just have to sit and be still with it, listen to myself, regroup, and then slowly begin to put one foot in front of the other again.  To remember how to just live in the moment.  To breathe the JOY of today in.  To be grateful for this very day.

Several days later, another of Chip’s friends from Colby, Nick Gaubinger, and his girlfriend flew in for the weekend.  That Saturday night, we went to Restaurant Eve in Old Town for a celebratory dinner in their tasting room.  Chip and I agreed he deserved one meal, void of any dietary restrictions, after incredibly awesome reports we hope to continue to receive every two months, so we treated ourselves to a seven-course dinner of the chef’s choosing accompanied with wine pairings.  What an amazing meal we had.

I was worried Chip might not be able to allow himself to relax and enjoy eating “normally” again–you know, enjoy eating a normal meal of foie gras and sweetbreads–but he did relax that night.  He even made us go to a dive bar on King Street afterwards for just one beer.  He was smiling and laughing just like old times.  Right before we left to go home, he gave me a big hug and whispered in my ear, “I don’t have cancer tonight.”  For a brief moment, I had my Chip back, and I felt joy, joy, joy, joy down in my heart.  Down in my heart to stay.

– Sheila