102,000

That is the platelet count today, 2 days after my latest low dose IVIG.

Celebratory news. Not quite a yahoo or whoopie or even a rah-rah, but still darn glad tidings.

It gives me some breathing room.

I am no longer in crisis mode, but all the decision points are still the same, just less urgent.

I am thankful for the respite and especially thankful for all the kind words and prayers.

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.

Crash Landing

My high flying days are behind me.

Today's lab report hit me like a midair collision.

My platelets have taken a nosedive to 38,000- About a drop of 200,000 in 13 days.

That is getting dangerously close to dangerous levels. Normal is >150,000. Dr. Kipps asked me three time if I had any nosebleeds or bruises.

Maybe it was a bad batch of IVIG. Dr Kipps thinks that's a possibility. I think it is his kind way to give me something to hope for.

Looks like I will be hitting the 'roids again soon. Looks like a shaved head and a N95 mask are coming soon to a blog near you.

Looks like a second transplant.

My platelets may have been decimated, but hey I am still going. Only slight growth of the palpable nodes. The rest of the blood count is good. Enough red cells and not too many white ones. The CLL isn't mounting a frontal assault, it has just turned my body against itself. It is trying to kill me with my own immune system.

Emergency IVIG tomorrow. Had to cancel a full load of patients at the last moment.

Recheck lab on Friday- then make my plans.

This stinks, but I am alive and motivated.

And I am so glad that I paused to soak in the wonder of the last week. I will never lose the imprint of that magic. That is a feeling, a joy, that will abide.

Meet the Man who saved my life

Still High

I am still floating from last Monday in Manhattan and the meeting with my kind and generous bone marrow donor.

I am still letting those emotions wash over me, sometimes in the foreground, sometimes on center stage in the theater of my remembering.

Soon I will need to fit the encounter into the rest of my life, make plans, move on.

But for now it still lives on top of a mountain, untouched my the mundane, casting its transcendent light in all directions.

For now I am still soaking it all up. And loving it.

Meeting my donor

I am just back from an incredible fundraising event in NYC for Ezer Mizion, the amazing international bone marrow marrow registry that found my donor. The are an incredible force for good, a wonderful non-profit.

I was the keynote speaker at the gathering.

Amazing amazing amazing. Emotionally wasted and physically exhausted from the fabulous time.

I MET MY DONOR- a young very conservative, very orthodox, very religious man of 23, newly wed, an Israeli rabbinic student, quiet and loving. A wonderful person who talked about how his world was changed by his life saving gift

Despite our near identical genetics, we don't very much look alike, although our coloring is similar, He is small boned, delicate, with a serious and caring demeanor. We both of course come from eastern European stock, but our family backgrounds are very different. We spent hours together talking at this gorgeous 7 story townhouse on the upper east side of Manhattan.

The 50 or so people there were all friendly and interesting and very generous.

Everyone said that my speech went very well. I was crying so it was hard for me to judge. My wife and daughter, Heather were also crying. All the men in the room were crying. Everyone was crying. Then they surprised me and brought out my donor, and I cried more and everyone cried way more. Lots of crying.

We raised a ton of money last night for Ezer Mizion. I wouldn't be exaggerating if I said that thousands of lives will be saved.

Meeting my donor wasn't like getting married or seeing your child for this time, but it was up there.

I am a very lucky man.

It was a very special day, full of love and healing.

More later. I need a shower and a nap.