Thursday, February 23, 2012

Lost Again

I am a bit lost these days.

I am in the trial, this trial that I pushed so hard to nab a precious slot and cajoled the insurance to cover an expensive out of state option.

Done deal.

Over the last few years when sadly it became all so clear that my transplant was not going to be my way out of the cancer dance, we have been waiting for just such a third chance, waiting for just such a trial. We have been saving up and preparing as best we could to manage all the out of pocket expenses and emotional stresses of flying back and forth and staying warm and dry in a city with a hard winter and sticking with my raw vegan organic diet outside the comfortable crunchiness of California.

I have read and scanned thousands of CLL articles and spoken with hundreds of fellow patients and scores of clinicians and researchers waiting for a new pathway out. In this case it is a pathway that is at once novel however you deconstruct it, be it molecular or therapeutic or modal.

Molecular: It is small molecule, small enough to get through the gut and into the cell unscathed, so you can take it in pill form. No infusions. It's not really even chemo. It doesn't kill, but blocks proliferation. Birth control for cancer.

Therapeutic: It's therapeutic response rate is near an amazing 90% in difficult to treat relapsed populations. And the longer you stay on it, the better the respond rate. Toxicities are low too.

Modal: It doesn't wipe out the cancer or even knock it back to undetectable levels, at least not at first. It may not even get you into remission. It just slows it down, it reaches a compromise with the nasty clone, so we all get along and live in harmony hopefully for a long long time

Is this a sea change in the molecular, therapeutic and modal approach to CLL? I am one of the "subjects" that should help answer those questions. I am betting yes and putting my body and my money where my mouth and pen is.

I got what I wanted. More than I could have dreamed of less than year ago when Dr. Furman when presented the preliminary data from his first in human trial of this new medicine, PCI-32765.

So why am I so lost?

Lack of clear purpose? A schedule full of so many permutations and combinations that my math and logic skills fail me? A domino effect that this decision effects that decision that effects the next and so and so on? Decision fatigue with so many mundane and critical choices shuffling around in my tired head for attention?

Maybe it is because my flight and lodging plans are less clear now than a week ago, but that's because of exciting new possible options?

Maybe it's the realization that I have lived with the fantasy for so long and now I am opening my body and soul to the reality that I am going forward? I am really doing this. The surrender of all that is possible in every moment to hard fact of the done decision.

I am not wavering. I am not panicked or depressed or even anxious.

I am just a little lost.

I will simply live here with this disorientation because I know it will be just fine. It is not that I am expecting some divine intervention or even an inspired secular EUREKA moment. Unlike one of my hero's Dr. Terry Hamblin, I am not one to "trust in G-d and think laterally". At least not the trust G-d part

Rather I know it will be fine because this "lostness" is ephemeral. It's real but of no consequence and is made of nothing. It is only a learning opportunity, not a place to hang out. I need to examine it and then it evaporates on its own.

It will definitely be gone by the time I touch down in Columbus in my winter coat with my wife by my side and my green tea and juicer in my baggage.

It will probably be gone much sooner.

This writing speeds the process. I am feeling less lost already.

No worries. Struggles, yes, worries, no.

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Anonymous Marilyn said...

I find that after I push hard toward a specific goal, driving toward it, and I arrive there, a feeling similar to what you describe descends. I think it has something to do with the amount of adrenalin needed for the push. At some point it has to retreat to normal levels again and I think it affects us in the way you describe. Just a theory.

February 24, 2012 at 5:17 AM  
Anonymous Cathie said...

I hope you know how many of us are pulling for you as you enter this trial. We have benefitted so much from your honest sharing, not just of facts about this disease and treatments but of how it feels to make these decisions

February 25, 2012 at 8:53 AM  
Anonymous Anonymous said...

It could be I feel your pain. We expend so much energy researching our options, lining up the logistics, worrying worrying about choices and and their outcomes and then suddenly we're there. It's still, there's no adrenaline powered activity .. and there's a little pill. That's it .. just a little pill.

Not quite there yet myself, still in the adrenaline swirl, but I can only imagine after the hoops you have jumped through.

All the best to you, Brian.

(And I just read Marilyn's post and she is saying just about the same thing. LOL .. great minds, Marilyn.)


February 25, 2012 at 4:27 PM  
Anonymous Anonymous said...

Still with you, Brian. Keep on with "no worries," you will definitely be thought of well in the land down under, where I am.

February 25, 2012 at 8:23 PM  
Anonymous Anonymous said...

I know you have strong faith, maybe now is the time to put trust in your faith........

February 26, 2012 at 8:59 AM  

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