Not quite a cure

I decided to go for it. I agreed to be infused with Rituxan, an antibody therapeutic approved for use in B cell lymphoma. But that’s not what I needed it for. Since the age of three, my own immune system had been destroying my platelets. Platelets are little fragments of cells that help your blood clot. My immune system has been very effective at destroying them, making sure that I only have about 10 – 20 thousand per microliter of blood instead of the usual 150 to 400 thousand. What has this meant for me? Well, I bruise easy. When I get a cold, I get bloodblisters in the soft tissue of my mouth.  In the unlikely event of head injury, my increased bleeding time could make the difference between death and life. I’m still trying to decide whether to forgive my conservative doctor who wouldn’t sign the form I needed to play soccer in high school. All in all, not the worst of chronic diseases by any means. But now, I had a chance of getting rid of it once and for all.

Interesting that the new therapy I decided to use was of a type I study for a living. Rituxan is a monoclonal antibody. Antibodies, because of their ability to bind specifically to a target, were hailed as the “silver bullet” for diseases like cancer and autoimmunity. It’s turned out to be more complicated than that. A lot more complicated.

Which brings me to my decision and its aftermath. Because I could continue on my excellent health insurance after being laid off from my previous employer, I could “pay” for the 4 – $10,000 infusions of Rituxan. My hematologists office diligently convinced my carrier that using Rituxan to treat my ITP was justified by sending them a pile of research papers describing results of this “off label” use. I had read many of these myself. In fact, I was probably one of the best informed patients who ever made the decision to take Rituxan. Interesting how even with all that study, knowledge and insight, it’s still another story when you think about taking one of these therapies yourself.

So did it work? In a word “No”. In fact, my platelet count dropped from the high teens to single digits, panicking my doctors. On top of this, my wisdom tooth, which my dentist had been asking me to extract for years, was suddenly acting up. Great timing. It would have been great timing if I was one of the 50% of people who have responded to Rituxan with an near normal platelet count for 1 – 6 years. As it is, I am now being hit with steroids to inhibit my immune system and IV Ig, a mixture of antibodies designed to saturate the system that mediates the distruction of my platelets.

Surprise, even these therapies that have worked in the past for me, are not showing the sustained (1 – 3 weeks) that they used to. It now looks like, after a course of treatment (another $25,000 worth), I can buy myself only a few days of high platelets. Just enough time to get my tooth pulled and a root canal for the one next to it.

As I review this crazy process. The cost. The time. I wonder about the healthcare system and how primitive some of our tools are for dealing with chronic disease (or any disease). It was a decent bet to try Rituxan, but I feel like I’ve become a prime example of the increasing imbalance between the costs and benefits of our healthcare system. Although I trust my doctor had my best interests foremost in mind, I can’t help but wonder about a system that makes it so incredibly lucrative for an oncology practice to sell patients expensive drugs like Rituxan.

A postscript to my story is that a CAT scan, done long after my Rituxan, steroid and IV Ig treatment, suggests I may have some residual spleen tissue that may have been missed or may have grown back after my spleen was removed 37 years ago. Removing the spleen cures ITP in 80% of cases, but it didn’t in my case. Maybe because some of it was missed back then. And maybe the CAT scan should have been done before all the other treatments. Removing this tiny amount of tissue, which could still be the primary site where my platelets are “filtered” out of my blood, could be the real cure I’m looking for. And just in time to get a tooth pulled.

A comment about Barack Obama’s speech in Cairo

I am a proud Bengali-Malayali southasian who moved to the US in my infancy. I have spent a lifetime balancing two very different cultures. I have reveled in trying to mix the best of each. A pleasant 40-year surprise has been that, although sometimes veiled in cultural costume, the values and ideals at the core of each culture have gradually shown themselves to be nearly identical and surprisingly harmonious. Today’s address quietly suggests to me that we Americans now have a leader who has lived this process and has had such an epiphany.
As a proud and privileged US citizen, I have suffered for eight years as our previous president has repeatedly shown that he lacks even a rudimentary knowledge of, curiosity about or sensitivity to other cultures. It is this ignorance that was central in the wasting of the vast reservoir of goodwill we won so painfully on September 11th. It is still unclear to me whether George W. Bush or his neo-conservative advisers had any clue about the difference between a Sunni, Shia or Kurd when they decided to invade Iraq. The damage to our credibility as a nation, let alone as a leader of nations, has heretofore been self-evident and saddening. The events of today declare that a real change has come.
The address by Barack Obama has left me profoundly thankful we now have a president that is, as far as I can tell, diametrically opposite to his predecessor in his approach to the challenges of clashing cultures, religions and nations. He shows the characteristics of one who has had to balance sometimes seemingly contradictory cultural forces in his own personal life. This personal process of finding a synergistic balance will surely serve him well in his attempt to lead our country and the world to a better understanding of each other and thus to inspire a heartfelt drive to cooperate in meeting the oldest and most difficult of challenges.
I applaud his Solomon-like, even-handed initial approach to the Palestinian-Israeli impasse. I strongly believe this most difficult of diplomatic challenges will serve as the context for Barack Obama to prove to the Arab world that his actions will be consistent with his moving words. He will not bend to the domestic political pressure to rubber-stamp every Israeli trespass in the name of security. He will find a way to bring all components of Palestinian leadership to the negotiating table. In these and other actions, he will begin to win the trust of Arabs as well as other stakeholders in this process. Today’s speech was a first step in building this trust, an all-important prerequisite to a robust process of diplomacy, negotiation and eventual resolution.

Cleared for takeoff!

Please fasten your seatbelts and put your seatbacks and tray tables in their upright and locked positions…

What: will make this blog unique? For starters, by background as a Bengali Brahmin, imported to the states 10 months into my life. Brought up by a practical and pragmatic Malayali chemist and an ascetic, whimsical Bengali physicist. An upbringing in Upstate NY, college at UC Santa Cruz and Berkeley. A long stint in Amherst, Massachusetts to get a doctorate in Cell and Molecular Biology. Trips to India, Canada, Mexico, Germany, Switzerland, Japan. Nature is my church which I hike through, ride through, paddle through, run through and immerse myself in whenever possible. So we have East coast, West Coast, American, South Asian, Scientist, Naturalist, Traveler, Reader, and (now) Writer. Politics?… to be gradually gleaned from following these outbursts. I expect something pretty unique exists at the nexus of these influences (and the many others I left out). How excellent to find a new path to discover and share what it is??!!

Why: to use the act of writing to get my bearings and share my headings as I navigate towards my goals of knowledge, wisdom, understanding and exchange.

What: the airspace I like to travel is economics, sociology, psychology, biology and politics. I have never-ending ideas and impressions that need an outlet, some structure, to be shared, transformed  and rediscovered through exchange.

Who: my readers…  will always be thankful to those who take a few precious minutes to read this. I’ll strive to make it worthwhile, in some way inspiring, provide a bit of motivation to think, act and share your ideas, irritations, inspirations and wisdom.

So that’s enough of heading down the runway…  let’s get airborne!!

My first 4th of July

I don’t have a flag on my car. I am a citizen and patriotic, but no flag. It was suggested by well-wishers after September 11th that I put one on my car since I look “Arabic”. My father put one on his car “just in case”. I was disappointed…  very disappointed. Perhaps I should cut Dad some slack. After all, he answered the door to an FBI agent after someone called him in for having an accent while making reservations for a foliage tour by train. Probably a scared, disoriented “patriot” trying to do their share to keep this country safe. The flag sticker, however, was a jingoistic “no go” for me. So were the lapel pins. I don’t like jingoism. I think it is anti-patriotic. In an excess of blind love for one’s country, a person will lose sight of one of the most important  and sacred responsibilities of true democracy and citizenship: to constantly evaluate, assess, question and strive to improve our incredibly precious, but “imperfect union”. I don’t have a flag, but I vote. And I now will write. And I will strive to take on more responsibility as a citizen. Teach my son about what being American has meant to me. Find new ways to contribute to the timeless purposes and profound ideals of the United States of America. Ideals that were eloquently mapped out by its founders, but which have so often been compromised by the falsely perceived requirements of politics and war.

I call this my first 4th of July because I can’t remember a time when I have had so much faith in this country’s leadership and admiration for those who have sacrificed so much for it. It is with a truly reborn sense of citizenship and purpose I will celebrate on this 4th of July.

Now I just have to figure out if this sticker will leave a gooey mess on my car window?

KP

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