Almost two weeks since my last post

It has been almost two weeks since I last had a word to say about my status.

Those who follow me on FaceBook know I have squeezed out a short comment or two, most of which have nothing to do with CLL. I don't tweet too often though.

I could tell you how busy I have been, I could share all the other writing and editing I have been doing, I could detail my painful deconstruction of all my CLL files in what in the end was a vain attempt to impose some order on the paperwork from hell, and I could kvetch about how tired I have been.

None of that would get at the real reason for my missing in action status.

Truth is I was not just up to writing. Bloggers block.

Here's the headlines to catch you up on my latest lab and adventures.

My platelets last week were 131,000. The B2M, a tumor marker is creeping up at glacier pace, and the rest of the lab is pretty much normal. Not bad, but not the usual happy bounce to normal by that time. Hard to know how to react, what to write. It is certainly more than OK, but I was expecting and hoping for better. Next IVig and with it a stat CBC is in 2 days. I will also have a flow cytometry to search for traces of cancer in my peripheral blood. These tests could predict my future, but honestly nothing is predictably predictable.

My four day attendance at a functional medicine conference on cancer in Carlsbad that reopened my eyes to some forgotten possibilities, the speech I gave at a very successful and very emotionally demanding fund raiser for the good people of Be The Match, and Purdue professor, Dr. Kim's reference to my blog in regards to social networking for those with medical needs at a conference in faraway Italy, all deserve significant comment and reflection. Not to mention the tragic loss of the Montreal Canadiens to Philly in the Stanley Cup playoffs.

I will get there. I will do that. But not tonight. This is enough for tonight.

Waiting Again

Waiting to see Dr. Forman.

The next logical step to shut down the ITP and get my platelets to a safe range to prevent bleeding is to add steroids, a lot of steroids, about 80 mg of prednisone (1 mg/k/d) for about 14-30 days then a slow treacherous taper.

Good chance it will work, keep me out of the reach of the gators, but it sure doesn't drain the swamp. And it comes at a pretty high cost.

And like any magic bullet, the first taste is free, but the second is pricey, and the third, well the third may cost me more than I can ever repay, and quitting may be tougher than dodging those gators.

And that is only the first relatively simple standard way of shutting down the ITP, not to put to fine a point on it, stopping the hemorrhaging before it begins.

That is just a bridge, actually more like a leaky pontoon, over troubled waters.

The real fun begins on the other side of the Rio Grande when I have to face THE BIG DECIDE.

Transplant or heavy duty therapy?

More on that quandary later. Today my head aches noodling the possibilities. The multifarious permutations and combinations makes simultaneous chess matches against a dozen grand masters feel like a tic-tac-toe match against a first grader with a learning problem.

In the end, it will be my call. Or the CLL will decide for me.

I have a week or two to decide. That'll work.

I hope.

Tomorrow's platelet count will determine how fast I have to move and how high I must jump.

I am confident, and ready to enter the arena again, but I didn't know it would be the circus high wire, without a net.

Being on a tightrope is living; everything else is waiting. - Karl Wallenda

Yea, right.

Staying low

Platelets were 28,000 this morning.

Below the theoretical danger line of 30,000.

But unless I plan to skydive or go a few rounds in the ring, I should be safe.

2 days from now will be the next moment of truth. See what the IVIG did in one last effort to throw a protective coat around my sticky bloodstoppers.

The level then will determine the next move, but I still got moves.

Hey, I still got moves.

Sounds like Mic Jagger.