Music or at least the blues after a CLL (chronic lymphocytic leukemia) diagnosis

Friends,

We are doing something entirely different- a feel good musical story of triumph after diagnosis and treatment.

This week in the Living Well with CLL/Taking Charge section of our website, we’ve posted an article highlighting a Canadian CLL patient living in Nova Scotia, Derek Caine, (aka Little Derek) who despite his diagnosis, expanded his world to include music and composition. You can read more about his story and listen to his musical endeavors here.

There are some great learning opportunities coming up:

NEW – May 19th WEBCAST at 1:00 PM EDT: Hosted by the Leukemia and Lymphoma Society, this 90 minute webcast on CLL will cover the latest information on CLL. Dr. Susan O’Brien from University of California, Irvine is the speaker and she will do a super job. Find out more information and register here.

May 14th at 9:30 AM in New York City, NY: Living Well With CLL is an educational conference in Manhattan hosted by Patient Power. You can find out more information and register here.There is no charge to attend.

May 21st at 7:30 AM in Needham, MA: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options will be hosted by the Lymphoma Research Foundation. You can find out more information and register here. There is no charge to attend.

June 16th at 6 PM in Salt Lake City, UT: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here.There is no charge to attend.

In early June, I am off to EHA and honored to be speaking in front off the European hematology community, sharing the stage with Drs. Jeff Jones and Paulo Ghia and Stefan Stilgenbauer on the topic: The evolution of CLL management – is it time to re-evaluate our approach? I am bringing our small crew and will report the latest news.

In the meantime….

Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org
http://bkoffman.blogspot.com

Feeling Better

1901 Life Magazine Cover

I slept well past noon today- one of many things that I am thankful for, and even took a long post meal nap, and except for a sore, slightly pink, and swollen upper arm where I got the vaccine, I am feeling much better. Still tired and a bit achy, but clearly on the mend.

I assume that yesterday's high white count and low blood pressure were an exaggerated response to the PREVNAR 13.

Or perhaps I was about to get sick and the IVIG infusion aborted the pathogen's attack.

I will never know, but I am grateful for feeling much better.

Our Thanksgiving vegan feast with family was lovely. I was righteously teased by my wife and my boys for some of my idiosyncrasies, we listened to Klezmer music, lit the menorah, and ate latkes with vegan sore cream and homemade apple sauce,  homemade stuffing with  homemade vegan gravy, salad, broccoli, stuffed baked pumpkins, seiten with onions,  homemade pumpkin pies, and Ben brought his homemade amazing stuffed baked apples served with coconut milk "ice- creme".  Sent the boys home with tons of leftovers.

An amazing feast, rightly designed to overwhelm with its abundance this one time a year.

Many of us have much to be thankful for, but until we create the best opportunities for all of us with CLL in particular and cancer in general, until every one of us, has had what I have had, the best chance for a long and meaningful life post diagnosis, our work is not done.

Happy Thanksgiving, my friends.

The Next Best Thing: The Fab Four

The FAB FOUR

I saw the real Fab Four in 1966 at Maple Leaf Garden in Toronto, a place built for hockey, not music.

I say saw because all I heard was the screams of the teenage girls behind and in front and beside me standing on their chairs and yelling at the top of their lungs from the instant the boys walked on stage until the ran off, after a very short set. I can't recall one song that they played.

It was memorable moment of Beatlemania and earns me bragging rights to this day, but from an esthetic perspective, it was a debacle.

I remember that Bobby Hebb (of Sunny fame) and the Cyrkle (Red Rubber Ball) opened the show. They were both very good.

The late Frank Zappa of the Mothers of Invention famously said that if music was a competitive sport, then perhaps it would have arenas built specifically for it. We are still waiting for that day, Frank.

The Fab Four, probably the very best Beatles tribute band with the eerily identical Ed Sullivan impersonator introducing the lads from Liverpool, was a much less historic, but more pleasing evening. The band played everything live, had a wonderful Liverpool banter going, nailed the nuances of the originals' stage presences, and when I closed my eyes, I was hearing the Beatles, live.

It was total fun and we danced two feet from the stage. We were too busy remembering the 60s to do much filming so check out the FAB's website if enjoy these teases. Better, yet catch them live.

Here is a snippet from the early Beatles:

Not bad, eh?

Here is a memory from the colorful post Sgt. Pepper 60's. Enjoy:



We had a splendid time. Thanks to my young friend Alec of the Anglomaniacs for turning me on to this special experience. Alec and I met because of the Beatles watch that I always wear for good luck and high platelets (See JBMA or Journal of the Beatle Medical Association 1960-1970 by Drs. John, Paul, George and Ringo on the Positive Effects of Wearing Beatle Paraphernalia on Various Blood Indices).

Who says that those who can remember the 60s weren't really there? Not true.

Leonard Cohen: Like any dealer, he was watching for the card that is so high and wild he'll never need to deal another.

Leonard Cohen, Isle of Wight 1970

Stranger Song

More nuggets that inform my life came out of this plaintive song and from that whole first album than it is healthy to admit. I still remember the small apartment in Montreal where I first heard his music with a bunch of other angsty teenagers.

A sample of the sound bites that constantly rattle in my brain from that one song:

Reaching for the sky just to surrender.

Please understand I never had a secret chart, to get me to the heart of this or any other matter.

You hate to watch another tired man lay down his hand like he was giving up the holy game of poker. 

And of course, I am still to this day:

...watching for the card that is so high and wild (I'll) never need to deal another.

The card that is so high and wild I'll never need to deal another.

Does it really exist?  I am still watching. And waiting.

Watching and waiting in CLL has a whole other meaning.  It is a wait and see stance: how is the disease behaving, and then ignore it or respond to it depending on whether it is being nasty or nice. I am long past that pleasant interlude of plausible denial. All my chips are in the game now and I grabbed what I believe to be my best card on the table. In a trial. And even it's only advertising one more shelter I can live with that.

On the Isle of Wight, Leonard performed infront of 600,000 in the early morning of August 31, 1970 not long after the final live performance of Jimi Hendrix. Talk about a change of pace. Are you experienced?

And 43 years later, the self proclaimed grocer of despair is still delivering.

Sorry for another brief diversion but where would I be without music. Cohen's song are always humming in the back of my head, and this is one of the most persistent.

Back to work. Will be blogging again this weekend.

St Patrick's Day with The Fenians

The Grove in Orange County (the squeezebox player looks right at home in his kilt)

Orange County's own local Irish rock band, the Fenians. Such fun. Celtic Rock. A crowd that covered at least three generations Irish dancing and wearing silly green beads and shamrocks on their heads.

I took a much need break from writing a paper on thyroid disease to catch their show.

No Guinness or Irish coffee or green beer for me, but green tea to celebrate St. Patrick's Day. Does that count?

Cabbage, but no corn beef for this vegan.

I should have been working, but I can only stare at my computer screen so long.

Posts and video interviews on CLL will be more forthcoming here real soon when I finish what I must on thyroid, gout, anemia, and post trauma stress disorder. I won't even dare to share what wonderful tales of organ dysfunctions and disease states that I got off my to do do list last week.

Who said my life wasn't interesting?

Should be all finished soon. Until the next batch.

Here's a sense of what I enjoyed tonight instead of doing my homework or writing a post with gravitas.

"Won't you take her in your arms and tell her that you love her."

Won't ya?  I think you should.

Am I turning Irish? No, but I am married to a bonny lass with Irish blood and green eyes.

And I believe in being fully ecumenical when it come to celebrating holidays, especially the ones that are such fun and include live music.

Austin. Music and Platelets

Life is sweet and full of music.

On a whim, after a vegan meal, went to the famous Cactus Cafe in the Texas Union at the U of T in Austin, and was blown away by Junior Brown

I love Austin.

Last time I was here I was lucky enough to Willie Nelson.

This place is a musician's paradise

Platelets were higher on Wednesday than 2 weeks earlier. Still taking the immunosuppressive, blood pressure raising, son of a mold, cyclosporin, but my kidney function remains good and it is suppressing my wanton immune system's wish to wipe out my platelets.

Still getting IVIG and blood work, but that means I am only in the infusion center 2 x month instead of weekly as I have stopped the Rituximab.

I am in a deep remission, deep enough to visit Austin and hear some great music

Just how deep will be determined by a bone marrow biopsy in a a month or so.

I am loving it.