Sunday, February 28, 2016

Traveling Blues related to CLL (chronic lymphocytic leukemia)

Stairs to the beach at Torrey Pines State Nature Reserve

February may be an extra day longer this year, but that still doesn't justify my travel schedule.

I was in Charlotte, Tampa, and Atlanta this month to speak to patients and caregivers about the importance of a CLL support group. The meetings were successful beyond our highest expectations, and if the cards and the support line up, and I expect they will, we soon will be starting CLL specific support and education groups on the east coast with strong  local enthusiasm and support.

When I am on the plane, I wear my N95 mask and using prodigious amounts of hand sanitizer to preserve my health.

I was in cold and snowy Columbus at Ohio State for my CLL clinical trial (more on that in a later post). It is not easy to leave warm and sunny Socal for the snow.

I was in Dallas for just a few hours at the airport to meet others to discuss the changing nature of medical education for family doctors.

And I drove to San Diego twice. The first time was for a wonderful meeting with a fellow CLL patient who is doing important and worthy work to educate and counsel those fighting a major illness or dealign with a serious life event (much more on that later too).

The second trip (that gave us time to hike at the beautiful Torrey Pines State Nature Reserve on the way down) was to attend the two day international CLL Research Consortium (CRC) meeting with folks such as Drs. Kanti Rai and Bill Wierda and Neil Kay and Tom Kipps and John Gribben and Matt Davids and Mike Choi and Cathy Wu and Jeff Jones and Januario Castro and Jennifer Brown and Carlo Croce and Nick Chiorazzi and Philip Thompson and Jackie Barrientos and many many others. What a privilege to be there and to hear their ideas on new research directions and to be able to insert a patient's perspective.

Many of the trips saw me flying across the country for only a few hours before scurrying home.

All this time in planes and cars is crazy and unhealthy and expensive and inconvenient, and very very tiring, but I do it because when there are these opportunities to make an impact or learn something or forge a new alliance, if I can go, I will try to be there.

March sees me in Denver and Dallas, back to San Diego again to see Dr. Kipps, and a quick trip to the beach.

I will be speaking at the LLS Blood Cancer Conference in Anaheim on March 19. This is a great conference for patients and caregivers. Tanya Siddiqi from the City of Hope will be talking about CLL. Those who heard her at our City of Hope CLL Patient Forum in December know what a great  speaker she is and how deeply she understands CLL. Try to attend if you are in the area.

The CLL Society will again have a table there so please say hello. Last year's LLS Blood Cancer meeting was our "coming out party", and this year we get to brag about all that we have accomplished in our first year and our plans for 2106 as a non-profit.

Yes, it has been and will continue to be crazy with seven trips out of town in the month (and one I didn't include on January 27), but today, I have nothing except for some phone calls that I must do on my schedule.

I plan to enjoy my down time listening to the Beatles and some be-bop and then going for a long walk.
Sunset at Torrey Pines on our way to San Diego

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Anonymous Neville Daley said...

I was diagnosed with CLL at the age of 55. In May I shall turn 66. In my first year after diagnosis, I changed my lifestyle dramatically to "beat" CCL that was going to end my life prematurely. My mass fell from 80kg to 70 kg in 3 months! People started questioning my health. I now eat sensibly but still enjoy my cider. Apart from slight swelling of glands in an armpit and on one side of my neck I have suffered no side affects in almost 11 years. My Lord Jesus has performed a miracle.

February 29, 2016 at 11:55 PM  
Blogger juanjuergens said...

Nice to read your article! I am looking forward to sharing your adventures and experiences.
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April 1, 2017 at 4:46 AM  

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