Wednesday, July 28, 2010

More Music and a great Montreal bagel

A last minute on an impulse hour long drive up the coast to Hermosa Beach, a few doors from the famous Lighthouse, 60's mecca for west coast jazz, Patty and I were transported away by catching our friend, Luther Hughes and the Coltrane, that is the Cannonball/Coltrane Project. Stepping in to hear the jazz go down. Patty had the scallops at Sangria, I had the bread (nothing vegan on the menu), but the music was the sound of heaven on earth.

On the way home, we rushed into the Montreal style Redondo Beach Cafe a few mile down the road just as it was to close to order a St Viateur bagel- no butter or creme cheese of course- but a taste of heaven nonetheless.

Small pleasures. Squeezing joy from every moment.

Now back to work.

Disturbing article out of Saudi Arabia suggesting very shortened responses of ITP to rituximab in those like me with splenectomy.

I just saw the abstract when I got home, so I have ordered the article, but I need to start making plans. Plan C. I need to catch up on my CLL reading.

Spoke with my donor today. He was enjoying a beach day with his family on the Mediterranean in Israel. We chatted. He is a very good man. I am very lucky, as I may need his help again. But we didn't talk much about that. We talked about the beach and travel.

I want to live in denial. I don't want to face decisions again. I am tired of being prepared. Sick of always thinking ahead.

But that is nowhere, and I have too many places to be. And too much hunger for life. I have too many good friends and too much left to do.

So I will dig in again and come up with a contingent plan. But not tonight.

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2 Comments:

Blogger debbiedoesraw aka grass fed momma said...

Hi Brian
I love that you are getting all the joy out of life and loving your remission. I feel that way most of the time and I know you have gone through quite a lot more than I have.. but I have my down days still.. worrying that I will die before my daughter gets out of high school etc..
I really wish for all good news for you.. but in the meantime squeeze away at the good times!
xo deb

July 29, 2010 at 10:35 PM  
Anonymous Anonymous said...

Ah, how we all want to live in denial. Like you, I want nothing more than this crappy disease to just go away. Forever. I am sick of it, tired of it, and I just want to go back to, well, normalcy.

And yet, that isn't possible. And today I helped a man newly diagnosed with Waldenstrom's macroglobulinemia. I gave him some websites, such as acor.org, that helped me get a handle on my disease. I also encouraged him to get a second opinion, if he can wait a few weeks, before starting treatment. I told him, for better or worse, that a consultation with an expert is always worth the time, trouble, and expense.

August 8, 2010 at 5:53 PM  

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