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.

I did it

Heard a lecture that I sort of understood on Derrida and his deconstruction of the binding of Isaac

That was more difficult than jumping off a mountain early in the day and soaring nearly 4000 feet in the air while I hung in a pose like superman, in my harness attached to the glider with just the air below and the fantastic kite above. WOW.

Leonardo would be so jealous.

Amazingly wonderful day.

More later with pictures and hopefully the amazing video of the flying Brian

Now if I could only understand Derrida.

New to CLL?

Here is a nice intro to CLL for newbies with a human interest angle from Curetoday.com. It is deeper than most introductions, but still accessible for those who are blessed to not need to be steeped in the nuance of the complex disease.

All of the doctors interviewed for the piece are tops and here's hoping that one of them leads the charge for a cure. Real soon!

Obviously based on my history, I am not in complete agreement on the last ditch role they see for transplant, though I am less sanguine about its place due to its evil dark side, graft versus host. I have seen too many good souls taken down that path without returning.

I am the 11q del that is mentioned for its propensity to have short remissions. No fun.

BTW, I am at the infusion center and I just received my CBC results. Platelets are a wonderful 274,000 today so it looks like the cyclosporin and rituximab is continuing to work its magic though not continuing to the lofty supernormal counts I had prior to my transplant. This hints at a weaker response than last time when the numbers were just up and up, but it way too soon to see a trend. It also suggests because of the 60,000 drop from last week that the IVIG I received two weeks ago may still be helping. If that is the case, I would expect a small jump when I check the count again next week before my next rituximab infusion.

If the numbers continues to fall, then I will need a Plan C and I will need it fast.

274,000 also means I can go hang gliding tomorrow. My only worries are the usual concerns whenever you jump off a mountain: not getting airborne with the resultant crash, midair collisions with other fliers, and hitting something you shouldn't when landing, but not the additional ones of bleeding and bruising from any minor jolt or twist that comes with low platelets. This is my chance.

As the great scholar, Hillel said: If not now, when?

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.