Draining the swamp

I waddled my way through a quick perusal of all 300 plus abstracts on CLL from the ASH conference, and by the end, each one was starting to look to me like a Jackson Pollock.

New meaning to the term: abstract.

Time to stop.

CBC and IVIG tomorrow.

I will scan the material on ITP and transplants, digest it and hopefully use it all to build some sensible plans to get me out of this mess.

Forget the alligators, let's drain the swamp

What follows is my handwringing over my next move.

For those with CLL or ITP or transplants or anything similar, you might want to dive in.

For those who have other fights to fight, but not these one. you might want to skim the surface, as the twists and turns assume a knowledge of, or at least an interest in the arcane and creepy crevices probed by the hematologists.

I am slowly moving into these murky vermin filled waters, but I have no choice. Don't worry. With awareness and some luck, I will emerge with all my fingers and a happy healthy mix of blood cells in my veins.

For some time, I have avoided confronting my options or as my dyslexic fingers would say potions, but the time is approaching to come face to face with my future.

To be proactive, rather than reactive necessitates anticipation of the sound of the other shoe dropping, even if I want to plug my ears or turn up the stereo.

Despite the great recent news about my platelets, sooner or later, I will need more treatment.

Likely sooner.

Likely steroids.

And when I start them, I will be on them for months because of the necessarily slow and gentle taper.

So why not skip that toxic and admittedly interim step, and jump right away to an even more toxic, but definite step.

Why not? Because it pushes the sea change decision up. Steroid will buy me time, not a bad thing, and I may have no choice if the IVIG loses its gusto while I am busy cogitating and lining up my ducks.

The argument against prednisone works like this:

Forget the alligators, let's drain the swamp.

Forget my ITP, as Dr. Hamblin counsels, let's treat my CLL, the underlying cause of the dysfunctional autoimmunity gobbling up my platelets.

That evil clone already may be sneaking back. It's gone from being invisible to showing up uninvited as enlarging nodes and a measurable but still tiny percent of my marrow.

The first question should be: Do I really need to hit the CLL or can I just knock back the ITP independently? In other words, do I really need to drain the swamp, or can I shoot enough gators to scare the rest into a long retreat?

I deeply respect Dr. Hamblin, but there is an argument made by Dr. Kipps and others to fight one battle at a time, in other words, control the platelets, then worry about the leukemia. Put off the more toxic treatments as long as possible. Make sense.

Friends have done that with great success, but their CLL was in deep remission.

My past story is muddied by the fact that my last durable successful anti ITP therapy, namely Cyclosporin A and Rituximab also had a profound anti-leukemic effect, so it is impossible to say what was the magic: the immunosuppression or the cancer suppression of the drug combo.

It is additionally confusing to ponder that my ITP is back with such a low disease burden (2.8% of the bone marrow), but that can happen in CLL. Last time my bone marrow was packed with 90% CLL when the ITP hit, and stayed gone even when the cancer clone had climbed back from 3% to 25% of the marrow prior to transplant. Go figure.

Maybe a repeat bone marrow biopsy (BMB) would help guide therapy. It's been more than three months since the last one. If my biopsy shows stable disease, or by a miracle, regression, (why not, I am vegan after all) that would certainly give pause to any aggressive cancer directed therapies. If it shows clear growth, then my choices become clearer. CLL tends to be a charging fullback. It doesn't often stop unless it tackled and pulled down to its knees. There are exceptions, but counting on it losing steam on its own or better yet being a wrong way runner, is an eternal source of hope and the direction of all prayers, but it is hardly a guaranteed winning strategy. True, the transplant may have significantly slowed its speed, but a BMB will tell me that too.

There are disadvantages to having Dr. Forman do my BMB, as the results between the labs at UCSD and City of Hope (CoH) are not strictly comparable, but if the results are that fuzzy, that suggests little change over the 4 months or more that will have elapsed between procedures. That will be good news.

There are significant advantages to letting Dr. F. have the next jab at my ilium.

My next transplant will likely be at (CoH). The decision to pull that tidal trigger is Dr. Forman's. The more confidence he has in the data to make the decision, and the more immediate the results are, the easier it will be for him to make the call. The impact of seeing my results in a fax from Kipps will be less impactful then having them show up on his computer screen at work. Believe me, I know from my own experience, there is more ownership of the tests I order on my patients than those ordered by outside docs.

I have to think of these things.

Are any of you still with me?

This is all a prelude to deciding the next BIG step.

I will continue this tomorrow.

It helps me enormously to do this dance in public. Thank you for watching.

Comments are welcome.

Highs and Lows

Here is the ditty I posted on Facebook when I got my platelet good news 3 days ago.

Sung to the tune of 76 Trombones

209,000 platelets lead the big parade,

With 1.1 lymphocytes next on the team,

They were followed by rows that were filled by the finest neutrophils,

The cream of every healthy blood stream.

Guess you can tell my IVIG is working and my platelets are back to normal-Wahoo

I have talked before about not getting too high or too low with this vomit comet of a disease, but hey, when I am weightless. why not celebrate, but because I know there may be a crash in the future.

Is it possible to have the highs without the lows?

The Federal Reserve couldn't do it. They rob the future to pay for the present.

Buddha couldn't do it. He snapped off the top and bottom of our existence.

Sartre couldn't do it. L'enfer, c'est les autres.

G-d couldn't do it. A wrathful G-d makes you pay for your good times. A merciful G-d is more compassionate and is always there to lend a hand, but she doesn't promise a smooth trafficless freeway,but pretty much guarantees a bumpy county road filled with potholes.

I think I will meditate on this.

10 pages of abstracts down, 22 more to go on Thanksgiving

I have begun to review the CLL abstracts out of ASH, the big scientific conference on all things bloody.

Last year I attended in San Francisco, and this year it is in the Big Easy, and I am sorely tempted to go again.

It is very busy, very crowded, very expensive, and really not a great place to get into any deep conversations.

It is however a great place to renew contacts, shake hands, and learn the very latest on CLL and transplant.

Also great place for H1N1 and a lousy place for a vegan. Too many fragrant temptations. There is a poh'boy sandwich with my name on it for sure in the French Quarter.

It is a great place to get overwhelmed in fact.

Instead I chose to get overwhelmed at home.

So much reading and cogitating. OUCH!

The abstracts are all available online at http://ash.confex.com/ash/2009/webprogram/start.html

I am through downloading and skimming the ones of interest in the first 10 pages or 100 papers. I have about 22 pages or 220 abstracts more to get through.

Then I do the same thing for transplants.

And then ITP (low platelets).

I am thankful for this resource.

I am thankful I can understand much of the scientific writing, that would have been beyond me a few years ago.

I am thankful that I can put many of the articles into perspective and not be bowled over by the the authors' sugary conclusions. I need a good BS detector to sort through some of the data.

I am thankful for the great majority of researchers who are out there trying in such wildly different ways to find an answer, to find a cure.

I am thankful for all the volunteers who agreed to enter these trials, sadly sometimes at the cost of their lives. They are my heros.

I am thankful to be here, and well enough to be looking at my options.

But honestly, for a few thousand dollars more, it would be way more fun to be going to ASH.

209,000

6 days after IVIG my platelets are back to normal.

Maybe I will go hang gliding tomorrow to celebrate this reprieve.

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.

Family Picture 1 Month Prior to Transplant

This was the gang together for my daughter, Heather's graduation from Columbia law school.

It is rare to catch all the Koffmans in one photo. And none of us with bunny ears or goofy faces.

That trip to New York City was my last air flight for quite a while. My transplant happened about a month after this photo. In retrospect, my cancer was on a fast march then, but was halted in its track by the drastic procedure.

Now it is almost a year and a half later, and I have recovered well enough to make two trips back to Manhattan from SoCal in 9 days, but am sick enough to worry about when and how I will fair with a second transplant.

And I am on edge about the trip and my speech.

Why am I so emotionally broiled for the short keynote address I am giving at the Ezer Mizion fundraiser on the upper east side? I speak regularly in front of hundreds of doctors on topics that are not particularly my specialty and walk away with rave reviews. I even did a comedy routine about leukemia and got some good laughs. This will be a friendly crowd of 50 or so.

I guess I really do know why. These are the people that found my donor. Without these people, without these people....... I don't even want to think about that.

I want to do my best by them. Not just because they are a great non profit organization, which they are, not just because they save lives, which they do, but because of the cold reality that I will need them again to come through for me.

Ezer Mizion Fundraiser

My wife and I will be flying back to frantic Manhattan again where I will give a keynote address, after only about a week at home in pleasant coastal southern California. I am blessed to live where people vacation.

This is no good for me. Fatigue hits me like a sucker punch in the 15th round. The lethargy is thickened by the stress of knowing there is much riding on my prose.

But back I go, because I have a chance to make a difference. A chance to share a shard of my story, and remind those untouched by leukemia or lymphoma, how a transplant can offer some their only path to safety. A chance to move them to help a stranger. like a stranger helped me.

On Monday I will be speak at an upscale fundraiser for Ezer Mizion, the good people who found my beloved donor and gave me only chance to live.

I will tell the truth - about how desperate I was until they helped me and about how desperately I still need them for another swing at the bat, a second transplant.

Don't you think I make a strange poster boy for bone marrow transplants?

But I know that when I arrive at the gathering, my tiredness, will melt like an icicle in a Cuban heat wave.

I will speak with passion and gusto. I will make a difference.

Platelets are rock solid, Yea Yea Yea (remastered)

You've heard the tune before. G-d willing you will be hearing it over and over again for a long time coming. Boring is good, change is bad when it comes to platelet count.

Platelets were a happy 223,000 yesterday. Two weeks ago the count was 226,000.

Can't say it enough. Flatline is good news when we are talking platelet counts.

Dr. Rai suggested I keep it simple, and so I will. He said and I am listening: Stay with the simple safe IVIG until it isn't doing the job.

In this situation concerning treatment, less is more. No need to add a more toxic chemical to the mix until my hand is forced.

The only change I am considering is stretching out the interval between infusions.

Chimera

My 2 grown daughters as unicorns and my son-in-law as the Knight in shining armor on Halloween

My offspring are garbed as mythical creatures. Impossible animals that could never and will never exist.

And yet that is exactly what I am reaching for, having felt the breath of a mythical beast in my blood, having sensed the sway and swagger of a new consciousness finding its way through my tissues, and then felt it slipped away, and with it my chance at an early cure.

I miss being that chimera, that magical and doable mix of two life forms or two lives in one, me and my donor. I know it can be done. I have been there.

I will be that chimera again.

No, I will not become a fire breathing monster, equal parts lion. snake and goat. I will become double formed, from two sources flowing in one stream, not in any allegorical sense, but in the flesh. Like Shylock, prick me and I bleed, but you better check my/his DNA. I will be a changed man, a double agent.

The second time it will stick. It will be no myth, but it could be mythic.

Talmudic Comments

After almost a year and a half of blogging, and nearly 100,000 page loads, I finally realized I could comment on your comments.

Duh!

There are some great commentaries on my last post and also my humble replies. Take a look, please. You will be rewarded. Just click on comment at the bottom of the post.

This is actually very Talmudic. As Rabbi Hillel, would say while standing on one leg in a very different context two thousand years ago: The rest is commentary. Now go study. Wouldn't it be great if I could set up a blog where the comments and references wrapped around the page in the fashion of the Babylonian rabbis? I am sure someone expert in HTML could make it happen, but I will spend my energy elsewhere.

Still if you want a personal response, please email at bkoffmanMD@gmail. com. That also is the only way I can get your contact info, as the blog does not capture emails. And you might want early notification of my book- still a work in progress, a labor of love and angst, and positive transformation- and that would be my only way to reach you.

But for now my simple goal is to make the comment section more lively and informative when the subject is appropriate, and occasionally even when it is just for fun.