Thursday, July 29, 2010

Savor Mystery

This is all shamelessly stolen from Prevention online.

I usually dismiss it as a terribly researched and sensationalist rag, but this whole article on happiness is quite sweet. I recommend it.

"In a culture obsessed with the power of information, the fact that most of us are a little unnerved by uncertainty is hardly surprising.

Yet research suggests that a dash of mystery can make positive experiences last longer. In one study, University of Virginia psychologist Timothy Wilson, PhD, and colleagues found that students who were given a $1 coin with little explanation reported feeling happier a few minutes later than those who were given either the same amount of money by a known source or no money at all. Wilson argues that those who didn't fully comprehend the reason for the gift spent more time mulling it over, extending their pleasure. "Once we've done the cognitive work to understand something, we kind of wrap it up in a little package and store it away and move on to other things," he explains."

One of the blessing of living with CLL and ITP, clandestine killers that I try to keep locked away in my medicine cabinet, is that you never know for sure what tomorrow will bring.

I got the full article from King Abdulaziz Medical City, Riyadh, Saudi Arabia that I mentioned in the last post and deep in the text I discovered that the 3 patient in the study with ITP who like me also had CLL all responded to rituximab, two with complete responses, and 1 with an enduring response > 1 yr.

Nice surprise when I read the details. I can already feel my brain tying the white bow around that tiny factoid, including the directions for use and looking for the enclosed 20 year get your life back guarantee, as I move forward.

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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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Monday, July 26, 2010

Forget the platelets, it's all about the music in Austin

Here's a little sample of Junior Brown for those unfamiliar with this one of a kind artist.
As I said, I saw him with friends at the Cactus Cafe in Austin where he did this song, but the solo was much longer, and the hat seemed much bigger.

Got his autograph after the show on this cool poster they gave everyone who attended.

Hard to remember any worries when you hear music like this.

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Friday, July 23, 2010

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.

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Wednesday, July 21, 2010

Posting less

The Nine Muses
I have been posting less.

This does not mean that trouble is afoot and I am waiting for the tide to turn before I can sanitized the news to safely share it.

There are three common reasons these pages go blank for days.

The first is that nothing worth reporting is happening.

Boring is good when you have cancer, very very good, but boring is also boring. Today my platelets were a wonderful 325,000, slightly higher than it was 2 weeks ago, and the first time since last May that I have gone without a weekly visit to the infusion center. Things are clearly going well.

The second reason is that at times I don't feel much like writing. The muses don't show up. This is most often because I am out of kilter, lost in direction, distracted, overwhelmed, or over tired.

The third is that I am busy writing and editing stuff with due dates.

With the the blog, I have no due dates, but that does not mean I have no responsibilities.

There is much happening when nothing is happening, much to learn when time slows down, when I have no news, good or bad, and no desire to write. It is a time to be most aware.

Thus this is precisely the time I must reconnect. As my favorite novelist, Tom Robbbins says about his writing style, I show up whether the muses do or not.

So expect me to get back to a more robust reporting.

Expect more soon on BP (not the oil company, but blood pressure), on the bats of Austin, the muses, and the considerable risks and downside of "looking good" and being inspirational.

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Saturday, July 10, 2010

Divide and Conquer

Alan Sullivan wrote this poem. It echoes and clarifies whispers you've heard on these pages.

Like me he had CLL. Like me he was diagnosed in 2005. Like me he was 11q del.

He died yesterday.

We never met, but the wise and compassionate CLL pioneer, Dr. Terry Hamblin shared his story on his blog.

Alan's blog is called Fresh Bilge.

I am again thankful to someone I have never met. Maybe we need to redefine what it means to meet in the days of the internet.

Thank you Alan. Rest in peace.

Divide and Conquer

The cells divide. The cells that will not die
divide too well and so they multiply.
They kill the host to keep themselves alive.

The blood goes bad. In vain physicians try
to purge the veins with drugs the cells defy.
The cells divide. The cells that will not die

mutate anew. The hardy few survive.
The few recruit the many teeming by.
They kill the host to keep themselves alive.

They colonize the nodes from neck to thigh.
The tumors grow, and scanners never lie.
The cells divide. The cells that will not die

stifle the very organs where they thrive.
Blind, stupid things—their purpose gone awry—
they kill the host to keep themselves alive.

Exploding through the flesh, they multiply,
but immortality eludes them. Why?
The cells divide. The cells that will not die
kill the host to keep themselves alive.

There is more news. Better news.

My friend with his aggressive hard to kill 17p del CLL, Robert, in the filtered air and negative pressure of a transplant room at City of Hope (such memories), after an terrifying wait, is finally starting to engraft, the process of becoming another when the one we are is not enough to affect a cure. G-d speed in your metamorphosis, Robert.

Alan's poem tells the cold truth, but not the only truth. Robert, and thousands of others, myself among them I hope, give testimony to other happier endings to the poem and the story.

We are truly all in this together.

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Thursday, July 8, 2010

Flying: Hang Gliding in Sylmar

Stepping or actually running off a cliff, trusting a few yards of nylon above you, the winds, the laws of aerodynamics, and the experience of my laconic instructor, Fred Ballard, and suddenly, with apologies to John Lennon, imagine ---- below me only sky. A jog of faith.

At first we lost altitude, then catching a thermal (think the raucous bubbles in a pot of boiling water) and we are 400-500 feet higher than the 3500 feet mountain top where we started.

There is nothing more immediate. No window to peer through. It is nothing like being on a commercial airline The difference is like that between a bike and limo. Nothing intervenes between you and the air.

There are no moving parts to a hang glider. So pure. So simple. You are strapped in horizontally Superman style, with a harness and carabiner that have a rock climbing heritage. You move by shifting your weight. Swing your hips to the left, and the weight shifts to the left, and the wing on the left dips and you turn to the left. You better swivel your hips back to the midline or you will be circling in the sky, getting nowhere. I tried to change directions using a head fake, but despite what some might think, there is not enough fat there to budge the glider.

The two minute video was shot from a wing mounted camera. I am the pilot closest to you.

All in all we flew for about 13 minutes and landed 2.2 miles from where we started. There is some stomach jostling so I was glad I took meclizine for air sickness. There are no shock absorbers on a glider and no seat belt to fasten. Truthfully, it was a pretty tame flight

Mostly it was amazing. We landed within a foot of the orange cone that was our mark. Rolled to a stop on wheels avoiding the usual knee jarring giant first step back on the solid earth at the hang glider landing field in Sylmar below Kagel mountain in the San Fernando range from where I had just flown. It takes 45 minutes to drive there and only ten to fly back. Patty and Ben were there to greet me. They saw me all the way with binoculars.

I am truly blessed.

People ask if I was afraid. When you run, attached to a big kite, off a mountain top by the fourth or fifth step you are feather touching mother earth, then there is no turning back as you reach for the sky. It happens too fast to be afraid. It is too beautiful, too now, too intense, too immediate to have any fear.

Life lessons?

This was not on any bucket list. This was something I always wanted to do. So when the platelets were good enough, and I could afford the cost, It was just a matter of doing the research and finding the best place with the most experience of landing everyone safely

Get the right people. I chose Windsports. They chose Fred Ballard, (from the Sylmar Hang Gliding Association bio "as an instructor, "Fat Fred" has introduced countless hang gliding "wannabes" to life over Kagel. And his nick name has nothing to do with his weight. Just ask him, he'll tell you.") Get the right equipment. Make your decision. Commit fully. Look straight ahead at your goal, not at your feet, trust yourself first and then those who are guiding you and before you know it, you will be in for the ride of your life.

Sounds like my approach to CLL.

To life.


Monday, July 5, 2010

Something Completely Different

Fred Couples representing the PGA at a tournament with all the caddies in Hab sweaters

Hockey and Golf. A marriage made in heaven.

Heard on the fairways that day.

"I'll need my trusty old wooden stick with the deep-mid curve with a closed angle and a lie of 6 please for a nice quick wrist shot to the green, caddy."

He shoots. He scores.


Saturday, July 3, 2010

Charity is an obligation

My religion teaches that charity is an obligation, a spiritual act.

I was a minor facilitator in a couple of wonderful charity stories.

Thanks to all you who used my blog and many other sites like it to vote for BE THE MATCH, I am happy to announce:

Jimmie Johnson wins $100,000 Pepsi Refresh grant to benefit Be The Match!

Thanks to you, we won! You votes counted! Jimmie Johnson won the $100,000 Pepsi Refresh grant to fund Be The Match Transplant Grants for Kids! Thanks to all who took time to vote and spread the word. This win for Jimmie is also a win for the kids!

The other story touches closer to home. I just discovered that a fundraiser in Leeds, England lead by Rabbi Daniel Levy and supported by the generosity of his congregants, set up the fund three years ago that found my donor.

The good rabbi and his United Hebrew congregants have done it again. I wrote a short appeal based on my transplant story for last month's fundraiser, not knowing at the time how these folks in Leeds helped give me this second chance at life.

Below is the news coverage. In the next post I will include what I wrote.


THE Ezer Mizion Bone Marrow Registry has benefited to the tune of £50,000 from a United Hebrew Congregation community initiative.

A gala dinner held at the Queens Hotel, Leeds, attracted some 200 guests.

And two Ezer Mizion donor pools were established in the names of two Leeds women whose lives were devoted to helping others - Audrey Manning and Susan Black.

Rabbi Daniel Levy, chairman of the Ezer Mizion dinner committee, said Audrey and Susan were two outstanding Leeds women who appreciated people and had a great sense of community.

Their deep feeling of responsibility led them to dedicate themselves to others.

He said: "Audrey raised funds for the Ladies Aid Society which eventually amalgamated with the Leeds Jewish Welfare Board. She was a keen member of WIZO and a most active volunteer at Donisthorpe Hall.

"Susan raised funds for orphaned children under the care of Norwood and she was also a committed member of the Chevrah Kaddisha; she was renowned for her warm empathy and comforting of the bereaved."

Three years ago, the United Hebrew Congregation hosted the acclaimed Sacred Voices concert. The event established four donor pools for Ezer Mizion and raised in excess of £30,000.

"Through one of these pools, the Leeds Jewry Donor Pool, Yaakov Fabian, a 22-year-old yeshivah student in Israel, donated his stem cells to an unknown recipient," added Rabbi Levy.

"The next day Dr Brian Koffman in California received them and in November 2009 they had an emotional meeting in New York.

"I am sure that the Black and Manning families will derive some comfort in the fact that other lives will be saved in their loved ones' memories from the establishment of the Audrey Manning Donor Pool and the Susan Black Donor Pool."

The Ezer Mizion Bone Marrow Donor Registry, established in Israel in 1998, is the largest Jewish registry in the world. Because donors and recipients need to be genetically compatible, Jewish patients generally require Jewish stem cell donors.

Rabbi Levy said: "Tonight we hope that those who need a bone marrow registry are able to find an appropriate match. That is why we are here tonight, to celebrate life and to provide hope for the future."

He paid tribute to those who supported the dinner and had a word of praise for the organising committee, Susan Belford, Sarah Doerfler, Ian Freeman, Pam Glynn, Michael Goldstone, Adele Manning and Anne Pliener.

Rabbi Levy later told the Jewish Telegraph: "It was an inspirational evening, full of joy for the lives that have been saved, but also tinged with sadness for those who have sadly passed away.

"The response has been fantastic and I am most grateful to the Leeds community for their overwhelming generosity. We are full of admiration of Ezer Mizion's awesome work."

Other speakers were donor and IDF solider Shmuel Horowtiz and London Ezer Mizion director Simon Maurer.

Entertainment was provided by Canadian-born Israeli Chassidic rock and soul musician Menachem Herman.

Thanks to all you and thank to those good people in England.

California to Leeds to Jerusalem. We never know where our salvation lies.

It is a mitzvah, a commandment to give back.

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Thursday, July 1, 2010

Two Year Anniversary

Today I celebrated, not only the birthday of the country of my birth, Canada, but the second anniversary of my hematopoietic stem cell transplant.

I am grateful to be here and so well. Others were not so blessed.

I have managed to avoid much of the grave toxicity of treatments which have knocked back my CLL and my fearsome complication of low platelets with a minimum of side effects using my most "unorthodox" approach as described by Dr. Kipps.

Yet I get tired of all this dancing around to avoid heavy duty chemo and still keep the CLL/ITP at bay. My maneuvering has bought me almost 5 years But it hasn't been enough time to find the cure. Not even close. How about an orthodox therapy that will save my life and that of so many friends? The only option out there is still a transplant, and I am more and more realizing how lucky I am to have had such a benign if failed course after mine.

We are all tired of the waiting for the magic bullet, our own Gleevec, a relatively non-toxic very focused small molecule that revolutionized care for our cousin disease, CML. CML used to top the list of transplants. Not anymore since Gleevec.

We are all tired of dancing and are looking for a more healing partner than old school chemo.

Will it be CAL 101 or Revlimid or ABT? I doubt it, but they are strong moves in the right direction. I have hope.

In the meantime, what choice do we have? We dance on. After all it is my rebirthday and I am deeply thankful to be alive and writing this note.

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