Life and Death

My personal lab results can wait. The science can wait.

What can't wait is the rendering of my, our collective pain on this page.

Three crushing notices of death in the last week. 

We all lost Ravi Shankar who was still teaching and making music days before he passed at 92. We celebrate his life and remember his music and at least for me, those heady days in the late 60s and early 70s when he first touched my life. The scene was a concert at the faded regality of the Outremont Theater, in Outremont of course, an ethnically diverse neighborhood of Montreal, where I lived when in medical school. The very high audience applauded loudly for the tuning up. Mr Shankar commented that he hoped they would enjoy the music as much. And then we were transported by the foreign tonality and rhythms of his raga to new places, places of peace and beauty. And the applause was stronger. We had been taught to listen with new ears.

I am sure his friends and family wanted more time with the master, but he had traveled further than most and 92 years is not a life cut short.

Not so with Randy Shirley, a CLL warrior, cut down in his prime, killed in his battle to lead himself and others to a place of disease control. A husband, father, friend, and confidant to many others with CLL, Randy's fight ended suddenly after only three short years from time of diagnosis. It wasn't supposed to happen like this. The trial of biological therapy was supposed to be kinder and gentler. Doesn't that mean that you aren't supposed to die?  While we have no information, no connections, no data, no causes or effects, but the one thing I know for certain is that life offers no such guarantees. No Kaplan -Meir Curve is 100%. You pay your money and take your chances. And don't expect the rules to be fair. What's fair about a brave and generous soul being so alive one day and gone the next?

But the absences of guarantees and fairness doesn't begin to touch the abyss of meaningless terror for the 20 children and the 7 adults of Newtown, Connecticut. 20 children, 20 little children, gone for no reason. The horror is unimaginable for their families. There are no answers, nothing that will ever calm my soul or ease the burden of living in such a tortured world or explain away the craziness. Others may fine solace in their faith and I bless them for that, and join in their prayers, but for me personally, that never has unlocked any doors of salvation. I wish it did.

My answers, such as they are, have to do with living.

For me, one of the living, one touched from a distant by these deaths, I will push forward with greater urgency, using my sometimes empty words and my too often tentative grasps of the science and my too occasional prescient maneuvers to try to heal myself and the world.

I will not surrender to the sorrow or be bullied by the terror. I will not say no to the risks. Instead, I will continue to take the necessary chances. I will not stop pushing the limits. Instead I will demand better answers.

I will remember to savor every moment as if it might be my last. 

Some old Hassidic wisdom will help: "Life is a very narrow bridge. The important thing is not to be afraid." Rebbe Nachman of Bratslav.

Let me finish with some east/west music, a raga, to soothe my (our?) ragged souls.

We are all in this together. Especially when it hurts.

Randy Shirley: Another CLL Warrior Passes

I had hope to post the good news on GS-1101 from ASH 2012, but life and death have a way of intervening. I will get back to my sharing of the science tomorrow, but my blog has always also been about the journey, the wins and the losses. And sometimes I need to share the bad news too. Sometimes I need to mourn the loss of a friend. Randy Shirley, a fellow CLL battler, passed away yesterday at the age of 55.

Randy Shirley

From my friend Nancy O'Brien Simpson:

Randy Shirley has my kind of leukemia which is currently considered incurable. He was diagnosed October of 2009. Married to his best friend, Debbie, for 33 years with three daughters. He was an awesome poster on my FB leukemia support group. So happy, and brave, and cool! He was young and relatively healthy when he volunteered for a clinical trial (ABT-199). He unexpectedly passed away this morning. Devastating news. The volunteers in the clinical trials pave the way for the rest of us. Sometimes with their very lives. RIP Randy Shirley and thank you. Your presence will be missed so very much.

From me:

I was blindsided by the sudden death of this brave and good man. So sad to lose another CLL warrior. Rest in peace, Randy. The memory of your hope and generosity is a blessing to all of us who were lucky enough to know you. My deepest condolences to his family and friends.

From my friend, Pat Kennedy:

The CLL community has lost a great warrior. Like everyone else I was blindsided by this news. Randy was participating in a clinical trial and had just posted yesterday about how well he was doing. His motto, which you know if you knew Randy, was "Never,Ever Give Up!" and he never did, right to the end. RIP Randy!

From another person in the same trial:

I am not sure you are aware yet but Randy Shirley has passed away.  I just met him and his wife on Monday when I was in Seattle for my monthly blood draw at SCCA.  He said he felt better than he had in years. He was on 300 mg of the drug at the time.  Tuesday AM he began taking 1200 mg of ABT-199.  Sometime on Wednesday he passed away.  I contacted the clinical trial coordinator and they are completely shocked and do not have any information that they are releasing at this point.  So no details.  I am stunned with this news but I know you and Randy have been in contact and he spoke to me Monday about how helpful you had been to him.  Thought you would want to know.  I am lost for words.

Randy and I were in regular contact. He was so upbeat about his trial and his disease. It is way too premature to draw any conclusion about the cause of his death or its possible relationship to the trial drug ABT-199. We know nothing about what led to his unexpected demise. Believe me that in these tragic cases, there will be careful probing into what happened and what can be learned. Believe me that nothing will be swept under the carpet. Trials don't work like that. If there is an issue, it will be outed. The safety profile has been excellent for many others and I would still recommend this drug.

But first I need to mourn the loss of another friend.