First the biggest most
important news:
My oldest daughter gave
birth this weekend to our second beautiful granddaughter. Mother and baby are
doing great (if you don't consider the sleep deprivation), and I am flying to Alameda to meet the newest member of our happy
growing family. I can’t wait to hold her and smell her and kiss her.
Sydney Lilah
It is being alive for moments
such as this that remind me why I fought so hard to travel across the country a
year ago leaving the California sunshine for an Ohio winter, uprooting my wife
and myself for months, and risking a new unproven therapy to knock back my CLL
and ITP. But my calculated gamble has been an unmitigated success, offering me
chances to see so much more than I could have dreamed possible. And no sight
will be sweeter than my new grandchild.
Now that baby has safely
arrived after a very quick and natural labor and delivery, my schedule is a
little more solid.
This frantic spurt of
travel started at the end of April with my trip to Columbus, Ohio for my treatment. I
stayed a few extra days due to scheduled CT scans, an opportunity to tour of the new hospital and Dr.
Byrd’s wonderful lab (the highlight was meeting the bright and enthusiastic
PHDs, MDs, and other lab staff), meals with Dr. Byrd and other friends, new and
old, and an amazing Mark Rothko exhibit at the Columbus art museum.
Rothko
When back home, I had time
to catch a hockey game (Go Kings Go)
where the Kings beat St Louis in the Stanley Cup playoffs, before driving up to
the Bay area to help my then expectant daughter and son-in-law with the
toddler. That didn’t stop me from flying to Vancouver, Canada for a few
wonderful days of a west coast all boys high school reunion (UTS or University
of Toronto Schools) that included kayaking in Deep Cove, a gondola ride to the snow and the
grizzly bears at the top of Grouse Mountain, and poignant memories.
Deep Cove, British Columbia
Now I am writing this post
from a plane leaving Orlando where I attended a two day primary care medical
conference.
Once back in the bay area,
I will be driving back to Orange County for a day or two, then onto San Diego
for one day for more learning.
Before the next week is
over, and after spending time at the office, getting trained on a new EHR
(electronic health record) module, and visiting the infusion lab for my life
saving IVIG and a routine check-up with my local CLL doc, Dr. Sharma, I will be
leaving for five nights in Chicago to cover ASCO with
Andrew Schorr and Patient Power. So far Drs. Byrd and Wierda are aboard for interviews and several other
familiar faces are very likely. I will also be interviewing experts on other
hematological malignancies and on some solid tumors for
Patient Power.
Only two days after ASCO,
things get real crazy. I will be driving up to Santa Clara to lecture with Dr.
Steven Coutre out of Stanford on anemia and MDS (myelodysplastic syndrome), a too common complication of CLL and its treatment. From
there, just hours after I finish, I drive to SFO to fly to Stockholm for only three
days to share my experience with ibrutinib from a patient’s perspective just
before the EHA meeting (European Hematology Association), then rush back to
the bay area the day before I leave for Chicago to see my younger daughter, just back from her delayed honeymoon in Spain and Morocco.
After another brief visit
with my daughter, son-in-law and the grandkids in Alameda, the drive to SoCal
gets me home in time for more doctors’ visits, clinic hours, a local CLL
support group, seeing my son Ben off to Stonehenge for the summer solstice with
the Druids, all followed by a two days car trip to La Jolla for more medical
education conference, this time on heart failure organized by UCSD.
A week earlier, my son, Will
is flying to Israel for 10 days, and I hope to arrange a meeting up with my bone
marrow donor.
The next weekend I am in Baltimore for more med. ed., and the extra bonus of
catching the Max Weber exhibit at the Baltimore Museum of Art.
This is the last year of
my CME cycles in Canada and the USA, and I must squeeze in a lot of hours to meet my requirements. Now
I have to overload my credits to catch up
before the end of June. Poor planning and other priorities lead to this crisscrossing of the country.
July 3, I have been ask to lead a CLL
support group for UCSD on their campus in San Diego.
In between, I have
scheduling and planning teleconferences and the Stanley Cup Playoffs.
No more travel is
scheduled for July until I need to be back in Columbus, Ohio again in the third week, and I
am so looking forward to not leaving home for a few weeks.
This frenetic pace is not
sustainable or healthy. I nap often at the hotels and on the planes. I wear an
N95 mask and gobs of hand sanitizer. I treat myself to the best vegan meals I
can find on the road ( which is not saying much) and I always try to see more of the town that I am
visiting than the hotel lobby. In Orlando, I hiked though a lush swamp with
catfish and egrets and Spanish moss that was just minutes from the silly shopping malls and alligator miniature golf courses near my hotel. No amusement parks for this traveler.
Shingle Trail, Orlando
Then I took a long nap.
I bring my comfort foods
(organic raw nuts and fine Japanese green tea), meet old friends, do work that
I love, and have a rare opportunity to make a small but meaningful difference
in the world.
This schedule was an
extraordinary confluence of opportunities and my inability to say no to spread the word about how cancer treatment is changing. I admit
there is desperation to all this journeying, but I know my time is limited and
I want every moment to matter.
If I was more at peace,
perhaps I could sense the gravity and power found in standing still, like a
mountain, like a master, but I am still a breezy soul.
Labels: Clinical Trial NCT01217749, CME, Flying, Granddaughter, ibrutinib, Medical Education, travel
5 Comments:
Mazel tov on your grand daughter; she looks very dolly.
Your travel schedule is, in one word, nuts!!
Go carefully and enjoy, no use suggesting that you cut back.
love from cold London
Susan
Congratulations Grandpa. She is beautiful.
But now I must go take a nap, because I am exhausted just ready your post and all that you have coming up. Including the Stanley Cup Playoffs........At least one of our teams may make it.
Blessings today and always,
Judy
congratulations on your 2nd granddaughter. She is a beauty!
--Janet Morrison
Hi Brian
Congratulations on becoming a second time grandfather. Looks like a lovely baby. so happy for you and Patty.
Mary and Arno
Congrats Dr. Brian on your new granddaughter.She is Beautful!Enjoy your travels and try to rest some to.I think it is Fantastic..you feel up to doing all you do.ou are being used by God in a great and mighty way.
God Bless,
Deb Light
www.cllcfriends.com
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