Teach Your Children Well

Saw CS&N last night. They did some covers like Ruby Tuesday (the Stones tune) and Uncle Tom's Band (the Dead tune) that seem to take those songs to the place there were mean to be, but never quite reached when originally recorded. Something new and something old in each tune creating a sweet comfort of recognition and at the same time pushing the music and you with it to a fresh place. Steve Stills can no longer carry a melody (he growls instead which worked well on the rocking encore: For What It's Worth (There's something happening here, What it is ain't exactly clear...), but he can sure play a screaming guitar. Nash and Crosby traced out searing harmonies, especially on Genevieve. Unadulterated transcendent magic.

Much fun, but I am exhausted today.

Thank you Robert and Wanda for thinking of me.

San Francisco

I had a fantabulous time in the city by the bay.

First the sleep disorders lecture and the interactive workshop couldn't have gone better. One of the diagnostic signs of a poor night's sleep is waking up in a fog. In SANFRAN it just means you are well oriented on most mornings. If you didn't wake up in a fog, you might be in the wrong bed.

It was two fun and informative CME activities, both with great audiences, lots of laughs and learning. I love to teach, and joke.

Because of the timing of my work, I was "forced" to spend two nights in town, and I used every minute of it.

Patty and I were amazed by a Cityguide walking tour of Nob Hill, home to the wealthy Nabobs like Huntington and Stanford and birthplace of the cable car and the first singing by Tony Bennett in the Venetian Room of " I left my heart ...." You know the rest. We saw all the sights.

And the food: Mystical old school vegan food at Ananda Fuara with videos of mediation master, Sri Chinmoy, then a raw organic Bolivian restaurant and cultural center, next the spacey but very sincere raw food haven Cafe Gratitude, and finally a family run organic Japanese restaurant with many vegan choice in a very seedy part of town. I love San Francisco. It is one of the few places in the world I don't feel weird because of how I choose to eat.

Where little cable cars climb half way to the stars

I am off to San Francisco to give a lecture and workshop on Sleep/Wake disorders.

Hope my audience doesn't doze off.

I am so busy preparing for the topic, I have had no time to focus on my CLL and ITP.

The quick trip is also a chance to eat some great raw vegan food and do some walking. Maybe catch up with some dear friends.

Half my bag is my meds. Ouch! The other half is my fancy clothes for the presentations. Double ouch! I hate getting dressed up.

Platelets are rock solid, Yea Yea Yea

The second time around with my IVIG, my platelets didn't budge between day 7 and 14, staying at a very healthy 220,000. After my first dose, by this time they had fallen 70,000.

I think it's the Beatles watch. It was running slow when I developed my ITP, and since replacing the battery, my platelets have improved.

Not that I am going to stop my IVIG. The Fab Four help those who help themselves. I get by with a little help from my friends.

Seriously, magical mystery thinking is a potent adjunct to modern medicine.

The Rabbi's Shofar and the Dog

Click on: The Rabbi's Shofar and the Dog

(pretty great isn't it)

To my friends struggling with life's battles, may this new year bring you victory, or if that is not possible, a deep and meaningful detente with the enemies within and without.

To the researchers looking for a cure in the workings of our cells gone bad, may the light go on this year and stay on through all the validations, and may the move from the bench to the clinic be easy, swift, and cheap.

To the families of those with loved ones up to their eyebrows with the travails of illness, may you find the strength and support to keep on the relentless and under-recognized fight you fight.

To our political leaders, may they remember the unforgiving reality and the often unintended consequences of whatever changes they may make to healthcare for those of us living on the knife's edge. May they remember who they work for and who pays their salaries.

To all my friends, those I have met, and those I will never meet, may it be a year of peace and joy and prosperity and some good deep belly laughs.

I do get by with a little help from my friends. We all do. Thank you everyone for your support. Especially my family and most especially my wife.

Finally, please find it in your heart to forgive me and others for both our shortcomings and overreaching. I have had my share.

We are all in this together. I am here to help. G-d bless.

Happy and Sleepy

We received a call from our daughter and son-in-law in Paris late last night, regaling us with stories of trips to U boat bunkers with 8 foot thick cement roof in northern France, and fabulous meals by the campfire with mussels and crusty bread. They told us how my best friend's daughter is so closing to making him a grandpa, they pushed her gravid form on a razor scooter to a Parisian restaurant as walking induced contractions.

When I had finished responding to the "urgent" emails, it was 2 AM, and though I set the alarm for 5:30 to drive to San Diego for an optional but interesting medical conference on sleep disorders, I decided, it was better to walk the walk , or in this case, sleep the sleep, than listen to the talk on sleep.

Platelets were good yesterday: 224,000. That is only half the rise as compared to my first IVIG, but it is still a very healthy and safe level. I can always find a way to worry or not.

A friend is debuting his new romance novel at a book fair with Dean Koonz and other big writer, so we are heading off to congratulate him and get an autographed first edition.

Overall, I have a good feeling that things are going to work out. Lots of great possibilities.

Platelets, Kites and Gout

Took our big new space shuttle shaped kite out on the beach for some powerful tugging by the gusty winds, not just on the kite strings, but our mood, upward and open. Mary Poppins was right.

The tangled strings forced us to quit, but we dallied long enough untwisting our twine to catch a Georgia O'Keefe sunset (did she ever paint a sunset?).

As the world turns, the sun drops behind the horizon and the clouds put on a show of pink and orange to melt the coldest heart.

Tomorrow I get my blood count rechecked to see if my platelets were boosted up and stayed up by the IVIG a week ago.

I also asked the hematologist to look at the blood smear for Howell- Jolly bodies. Quite a silly name. Today, everything is automated, and it is quite rare for a doctor to actually peer at a patent's blood. If these purple DNA remnants appear in what showed be a boringly pink hued misnamed red blood cell, they suggest my spleen may have grown back, contributing to my ITP. With a functional spleen, they would never survive a quick trip around the blood stream. The presence of these funny sounding creatures does not definitely prove that no little splenule has seen an opening to take over the clean up process when the mother organ was bagged and removed through a laparoscope a few years ago, but it is suggestive that splenic regeneration is not the cause of my platelets' tumble.

Tomorrow I will be giving a lecture on the rise and fall of uric acid which is the sine qua non of gout. Too high is bad, but too fast a fall may make a painful situation worse.

Ups and downs. The world is full of them. Better learn to live with them, because although you can moderate some, you can can't control them all.

I am trying to listen to my own advice, and feeling pretty good these days.

Do I get points for trying? Surfing USA

Home from Doheny, and Surfline said local conditions were fair. Why wait? Platelets were OK on Friday, the water is warm for SoCal, about 69 F, and the beach is 10 minutes away.

Fair they said. Unfair I would say, 1 to 2 feet, choppy, blown out, so bad in fact no other surfers were in the water, but I took my 9'6'' old school dinged up single fin Gordon and Smith out of the garage, cleaned off the dog hair and old wax, used the new soft roof rack I had bought for the purpose, drove to 34th St. in Newport Beach, forgot to bring a towel, waxed up my board, and went into the water.

I fell off the board on the few small waves that I caught as I struggled to my knees, let alone my feet, but hey I was back in the water on my board. I didn't break or twist or bruise anything or anyone.

Gnarly.

The Beach and Beyond

I took time out from idyllic camping at Doheny State Beach right on the sand to attend the CLL support group.

It was not easy to leave the no worries, life is simple, mindset of the beach to drive up Pacific Coast Highway to visit my friend Joe and the rest of the CLL gang.

I even brought Joe salt (Himalayan) and fresh bread (from my favorite organic vegan bakery, Avanti Cafe) to bless his new home: Bread... that this house may never know hunger. Salt... that life may always have flavor. You can add a broom to sweep the troubles away, but enough already.

The meeting was as always, solid and authentic, well worth the travel, but sadly only 3 of us were able to make it. Maybe it was because it was hard after the holiday weekend. I guess it is good that we are all so busy with more than our CLL, still I miss the rest of the gang. This is important stuff. The support group is crucial for my well being and for helping me to clarify to my decisions. It is also a chance for all of us to, (pardon my Californian 60's speak): Share

Meanwhile back at the campsite.

The beach was cooled by onshore breezes to a perfect toasty warm, but the waves were flat, so no Surfing USA, just swimming and bogie boarding in the shore break. And of course staring at the dancing flames in the campfire, and reading and vegging out. One advantage to being a raw foodie is no cooking pots to clean.

I remain confident that I have excellent options and no emergent dangers, and so look forward to many more chances to surf. No bucket list for me. Not for a long time.

It is never too late to save a life

Orange County News - Local Leukemia Patients Struggle with the Shortage of Asian Bone Marrow Donors...

From: Orange County Weekly | August 28, 2009

Matthew Nguyen’s battle with leukemia highlights the critical shortage of Asians registered as bone-marrow donors Read more at Orange County Weekly »

Minorities have a particularly difficult time finding a donor. Please consider getting on the list. You will feel great.

Not focusing

I am enjoying not focusing on my CLL and ITP. In a plain and quiet mood.

There really is no urgency. There is no tragic misstep that can't be undone, no abyss to stare into (and no abyss staring back), no reason to not take my time, and carefully consider what if anything to do.

After the shock of the unwelcome return of falling platelets, I am realizing that I am in no imminent danger. I just need to come up with a sensible plan before I am in trouble. That might be as sudden as a stroke, or may be a generation off. Likely there will be tell tale signs that will help predict how soon to make my move. I can be patient and gather more data points over time. I can wait.

That is plan for now. Enjoy the autumn, stay vigilant and then reassess. Much to look forward to.

Of course this all might all change tomorrow.

Not waiting for the other shoe to drop

Because maybe it has.

In the last week, we have managed:

A broken water pipe, so all the water to the house was turned off for hours. Miraculously, it was fixed on a holiday weekend.

Several short unannounced blackouts and brownouts that our electric company only admitted to after they were over.

An overheating, funny sounding gas cooktop. Patty still cooks some meals for herself. For me, being raw, needing to disconnect the cooktop is a non-event.

Two broken sprinkler heads (not a crowd pleaser to see the geysers of water running down the street in the midst of a drought). Warren, my wonderful Kiwi neighbor, and I did in almost 2 hours of sweat and miscalculation what my gardner could have done in 10 minutes, but we fixed it. Wonderful sense of achievement and completion. Cost was less than $3.00, if you don't include the hourly wages of a MD and CEO. And the laundry bill from our mud splattering.

All but the cooktop are resolved. And we even figured a way so that 2 of the burner are safely functional.

These things are nothing. Cancer gives you great perspective.

Going to fly a kite (bought a funky second hand kite on my way home from Torah study and services) .

Feeling much better about living in an unknowable world. Actually feeing just fine with it. The mist is not lifting, but I am OK with it.

Lost

Nothing is clicking into place. I feel like I have been placed in the middle of an opaque Russian novel, and I need to rewrite the plot lines of a dozen characters before they all are lost to their own conceits of being forced to wear gray overcoats and live short lives of despair.

I think I see the ghost of an answer raising out of the mist like King Hamlet, and then it is gone.

Like the anguished dark prince of Denmark, I want to scream: Speak to me.

But it is fades without a word. I am still lost in the mist.

What to do? What to do?

There is no one with the answer. Or rather they all have answers: conflicting and contrary and incompatible with each other. No Moses with the tablets.

Is a carefully constructed plan full of nuanced what ifs and Boolean logic my path to some clarity? Can I use my mind to wrestle a solution out of this knot?

Or am I squinting too hard into the fog hoping to catch a glimpse of the far off promised land of a cure?

Maybe the better approach is emptying of the ego and an openness to a fresh idea out of nowhere (know-where). Something completely different.

I need and fortunately have more time.

I will bide awhile. I will let it all soak in.

I am not despairing. I am just completely lost.

Platelets were staying up, but I wasn't

At UCSD, my platelets have stayed up at a salubrious 231,000 a full 10 days after my low dose IViG. That is more very good news.

The other good news is that my FISH studies show that I have a normal male karyotype. My wife will vouch for that. No old familiar 11q del and no clonal evolution were found, though it might well be sampling error.

The recent bad news is that my previously clean as surgeon's sterile knife bone marrow is now 2.8% filled with CLL, and my nodes are growing, albeit very slowly. Bad to the bone, as my "game worn" CLL Patient Advocate states.

Adding it up, it means I have some time to make my big decisions about treatment. How long I have before I am forced into action is like guessing the time it takes to drive anywhere in LA. You can never really be sure. You are almost guaranteed to arrive too soon or too late.

Dr. Kipps was running behind (no surprise there. he works in patients like me all the time), so I missed my chance to hang-glide. He thinks he saved me an orthopedic consult and he might be right with my wobbly knees. As a result, my platelets may be floating in the normal range, but my crocs are still stuck on the ground. No time to jump off a cliff at the glider port .

Maybe next time. If I haven't started therapy.

I promised I would post soon on my reset plan, and my data collection is nearly done, but head is still murky trying to wrap around all these changes.

By the way, our time away at the Rancho Bernardo Inn was wonderful. They treated us like valued guests though we had snagged the cheap seats. It was a great chance to stop and sit and do next to nothing.

I could never understand my parents going on vacations to sit on the beach, and just veg out. Now, now, 4 plus years into a tough fight with CLL/ITP and 2 years short of 60, I am finally getting the attraction of having no attractions or distractions.

Very helpful to clear the brain.