Living With CLL (Chronic Lymphocytic Leukemia): My Personal Clinical Trial News and Travails from the James and My Take on IV versus Oral Therapies.

"Brushstrokes in Flight" by Roy Lichtenstein at CMH airport

If you want to skim through my long miserable travel story, and just get to the lab results and my reflections on all these goings-on, my feelings won’t be hurt.

Monday, May 25, 2015, I got out of bed around 5 AM after only 4 hours sleep in order to catch my early flight to Columbus via Dallas (DFW), so that I might arrive in Ohio (CMH) in time to spend some hours with a good friend over dinner.

All went well at the airport (breezed through security in 5 minutes) and with my first flight.

Little did I know that I would be spending time with news friends, my fellow travelers sitting on the tarmac for 3 hours the first time, and more than two hours the second time.

And I must have looked mighty strange during much of that hurrying up and waiting. Having somehow lost my N95 mask after the first flight, I wore the cloth eye mask that I had in my bag over my nose instead of using it for its true purpose of blocking out the light to allow sleep.

Torture by a million blows: 

First, after boarding the plane and a minute away from take off, comes the first 15 minute delay at the gate due to the rain that’s coming but not there yet, then another 30 minutes delay, and then more and more, then finally we are pushed out the gate as the ground crew are back in action now that the rain threat has passed, but when we get to our runway there are no longer any flight corridors to the north, so we wait and wait and wait again, then make the decision to make the long taxi to the other side of the airport for a take off on the still open longer southern route to our destination (FACT: DFW is bigger than the entire state of Rhode Island), only to wait again…. until we become too low on fuel to make it to Ohio, so back to the gate, where just before  things are looking as if we finally might get airborne, we next learn that our flight crew has just passed the “legal limit” of how long they can be at the controls, so we need a new pilot and first officer. More delays at deceptively optimistic 15-minute increments, until the final cancellation is not really announced, more just realized and we all march off the plane.

I am one of the lucky ones who left the long, long line at the unlucky gate and walked to the next open gate (a flight to NYC as I recall) where the helpful agent helped me grab one of the few remaining seats on the next flight out, originally scheduled for a departure about three and half hours after the first one.

I was OK with all this until the almost identical story started repeating itself on my second flight, right down to losing our crew as we were within minutes of departure.

Now I was starting to get panicky.

I was stuck at DFW. It was after 10PM and we had no crew. As a result of having no one in the cockpit, we, of course, had no air conditioning. No one could turn it on.

There weren’t even any flights available the next day that would get me to the clinic in time for an afternoon appointment. And I have my important IVIG infusion scheduled back in sunny California the day after. And the day after that, I’ll be off to Orlando, and the day after that, Chicago for ASCO. My dominoes were tightly lined up.

No clinical trial appointment at OSU would mean no more magic pills.

I was completely out of my ibrutinib, having stretched this clinic appointment to the maximum at 13 weeks. AND I had just read the ASCO abstract about increased relapses when we miss more than a week of pills. More on this critical subject later.

It got me thinking.

This cancer-controlled life is such a fragile construct and there are so many ways it can blow up. Let’s face it: Those of us with CLL that need treatment, especially in a clinical trial, especially in a clinical trial across the country, are high-maintenance and high-risk for something messing up.

Of course my dinner was canceled. And any food plans. No 7/24 vegan catering in Columbus.

But amazingly American Airlines did find a fresh first officer and about 45 minutes later, a new captain for my second flight.

That plane ride to Columbus ultimately left a little more than 8 hours later than planned and instead of arriving at 6:45 PM, I got in well after 2 AM. All the car rental stalls were closed. Got into bed at my friends’ house (without waking anyone up) around 3:15 AM and was up again at 6:45 AM for an 8 AM clinical appointment.

All of this with a lingering cold! And with less total sleep times in two days than total time on the tarmac.

But it all worked out.

And there were some unexpected surprises:

In Dallas, I was introduced to a wonderful 91-year-old women aviator, flight instructor and former WASP. At the request of her friends who discovered that we were on the same flight, I helped shepherd her through the same confusing mess that so many of were enduring. She was charming and full of great stories and she walked faster than I did.

When we arrived at CMH, she asked if I might help drive her home as we discovered she lived close to my friends’ home north of Columbus, so after some fumbling with the GPS in her new KIA parked in an offsite lot, I drove to my destination and she continued the less than 2 miles to her home.

At the clinic early the next morning, Dr. Byrd checked out my head cold and declared it was a head cold. No chest rattles or swollen nodes. No treatment.

My blood count was basically normal- borderline anemia, but all else was good including normal platelets. Blood chemistry was normal too, except for the usual low protein. That’s what happens when we don’t make immunoglobulins, so no surprise there

But I always seem to manage to find some cause for worry. My ALC (absolute lymphocyte count) was a very normal 2.48 but that is double what it has been over the last few years. It usually lingers around 1 or less. 

Why the jump up?

Could it be from my cold? You bet, but I still will be happier when I see that it is not the start of a trend.

(HAPPY UPDATE: ALC was 1.2 the next day back at my local infusion center at St. Jude Medical Center in Fullerton)

My small number of myelocytes probably also signifies nothing. You are not supposed to see any myelocytes in the peripheral blood

My LDH was just a tiny high too. 207 and normal tops out at 190. There are a million causes for that blip. Most are innocuous, but it can herald cancer resurgence when it climbs and climbs and climbs. Again it makes me more vigilant, but I know and I counsel others that the trend is your friend and will tell the tale, not one isolated and trivially elevated level.

Putting it all together (and more critical lab is pending) it probably doesn’t amount to a hill of beans, but I have been spoiled by a few years of mostly boring results.

One last sweet encounter to share:

As most of you know (probably to the point of annoyance at this point), I am vegan and eating on the road is always my personal challenge. Despite the heartening finds of lentil and kale/quinoa salads at DFW on Monday, unless I took some bold action, it looked like my food fare on the way home from breakfast until 10 PM when back in my own kitchen would be only the raw organic nuts, green teas, and the vegan cookies that usually accompany me in my carry-on bag for such contingencies.

CMH might have a fabulous Lichtenstein sculpture, but it is lacking in vegan cuisine. My connection in Phoenix is too tight to grab a snack even if there was an option.

So I sleepily waited at the James Cancer clinic after my appointment was done until the lovely Portia’s Café opened its doors at 11 AM, and then treated myself to a cab drive to to this Clintonville haven of delicious organic vegan and raw food. After a naturally sweet vegetal loose green tea, the tasty fortifying raw broccoli soup, a deeply satisfying gluten free raw hummus and sprout wrap and a to-die-for vegan chocolate “cheesecake”, my batteries were recharged. I wasn’t hungry any more.

The same cabby picked me.

Here’s the cool part of day two:

Magid, the cab driver, was born and grew up in Fez, Morocco and is a geography student. We talked and talked (some in English, some in French, none in Arabic) about his wonderful unique corner of the world that I have been lucky enough to visit twice. His wife has just joined him from Maroc.

He insisted on cooking me a vegetable tagine next time I am in town and I think I will take him up on the offer.

So despite all the delays and near panic and my dangerous lack of sleep (I wrote this on the first leg of my plane trip home), my travel adventure was full of some magical encounters, an on-time clinic visit and good news from Dr. Byrd.

I am flying home with 13 weeks of ibrutinib, and for my wife (SSSHHH!), two pounds of Tim Horton’s whole bean coffee and one squished apple fritter, treats for her that are woefully unavailable in southern California.

On a different note, please check out the CLL Society website today for the first of my monologues on therapy, this time on oral versus IV drugs. It’s a more nuanced decision than I thought when I first started researching the material for the post. The direct link is here and I would appreciate your feedback on this new format and content.

I think this is all working out.

My blog is reverting back to my personal story and where I postulate and pontificate however I want, sharing the good and bad.

The CLL Society website is evolving to be more about the facts and research news, their unpacking and contextualization in our effort to make them useful and accessible.

It is more effort to keep both going, but I believe they are both important in their own way.

What do think? Please let me know.

PS. We were sideswiped on our way out of the airport. Thankfully no one was hurt, but the rear and both door panels on the passenger side are going to need work. OY!