"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
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.
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
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.
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
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.
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
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!
Labels: Chronic lymphocytic leukemia, Clinical Trial, CLL, CLL Society Inc., Delays, Head cold, ibrutinib, lab results, sleep, travel