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.

Lost

Nothing is clicking into place. I feel like I have been placed in the middle of an opaque Russian novel, and I need to rewrite the plot lines of a dozen characters before they all are lost to their own conceits of being forced to wear gray overcoats and live short lives of despair.

I think I see the ghost of an answer raising out of the mist like King Hamlet, and then it is gone.

Like the anguished dark prince of Denmark, I want to scream: Speak to me.

But it is fades without a word. I am still lost in the mist.

What to do? What to do?

There is no one with the answer. Or rather they all have answers: conflicting and contrary and incompatible with each other. No Moses with the tablets.

Is a carefully constructed plan full of nuanced what ifs and Boolean logic my path to some clarity? Can I use my mind to wrestle a solution out of this knot?

Or am I squinting too hard into the fog hoping to catch a glimpse of the far off promised land of a cure?

Maybe the better approach is emptying of the ego and an openness to a fresh idea out of nowhere (know-where). Something completely different.

I need and fortunately have more time.

I will bide awhile. I will let it all soak in.

I am not despairing. I am just completely lost.