2/5/21 A better View From Here

Sometimes the storm brings the unexpected. Sometimes it just brings rain. Other times the clouds gather and the wind blows, yet the storm never comes, just a gentle breeze and the soothing sound of raindrops on a tin roof. Last night was like that.

Few things soothe like raindrops on a metal roof. The drone of the drumming on the roof furnishes a percussive rhythm that lulls us to a warm sleep that restores us down to our core. In the morning sun, the things that seemed so hopeless in the dead of an earlier stormy night seem to have faded with the darkness. Phantoms so vivid in the night reveal themselves to have been less than we imagined. We suffered with a self-inflicted fear that, while having tenacious roots, are roots that are anchored in only the thinnest of soils.

I didn’t sleep at all on Tuesday night, nary a wink. I didn’t sleep much better on Wednesday. Last night was different. At first it seemed like sleep would evade me again, but I collapsed into a still, dreamless slumber. It only lasted four hours, but it was a good four hours. I have all kinds of problems with sleep, none of which are related to CLL other than the realization that stress over the CLL can certainly contribute to impeding. Those things just fell away in a fit of exhaustion.

Wrestling phantoms, which in essence are not really phantoms since they have a concrete basis, is exhausting. While concrete, the phantoms have an abstract life that we furnish them at great cost to ourselves. This happens to everyone eventually, over one issue or another: our jobs, our career, the families that we are raising, wars and rumors of wars, famine, pestilence, plagues, locusts, and our health. There is plenty of fertile ground for the phantoms to take root, now nourished by us as if we were spreading fertilizer on newly planted ground.

CLL treatments have come a long way since I was treated in 2009. I was treated with the then novel combination of Fludarabine/Cyclophosphamide/Rituximan, the first chemotherapy/immunotherapy for CLL. FCR, while extremely effective for me, has fallen out of favor except for those with a certain subset of genetic markers, some of which advise against FCR because of its proclivity to cause the CLL to morph into something worse. So, even though the CLL furnished me a five year Minimal Residual Disease Negative status (complete remission), I cannot take it again. The risks would be too great, particularly since I have a marker called Unmutated IgVH, a gene that most people with CLL present in a mutated state. The mutated IgHV gene is a good thing, if anything about CLL can be called good. Those with the mutated variety have more favorable outcomes to treatment and a longer overall survival rate. I wasn’t that lucky, being consigned to the minority of us with CLL.


Now there are so many different biological agents used to treat CLL that didn’t exist ten years ago: ibrutinib, acalabrutinib, obinutuzumab, venetoclax, and a few more artificial antibodies our own bodies might produce were they able. They all target only the cancer cells that display certain characteristics that differ from our normal B-lymphocytes, a type of white blood cell gone as bad as Marlon Brando’s character in The Wild One. These biologic agents target different proteins and enzymes that exist only on the surface of the cancerous cells, such as CD20, CD38, and BTK, These don’t exist on healthy cells, so the biologics ignore them, targeting only the marked cells, thus giving us effective treatments without nearly as much ancillary damage as chemotherapy, though they are not without serious risks. There is also the possibility in the future for an allogeneic stem cell transplant, where our own immune system gone wrong is replaced with the immune system of a bone marrow donor, or even CARs-T therapy where genetic material from our own body is reprogrammed to target the cancer cells, thus furnishing us with a real antibody to specifically fight the cancer. So much promise we have now.

The sun is rising as I finish this. It is rising on a cool morning, thick and dripping with the rain that washed it last night as I slept all wrapped up in my feather bed. I slept well and rose early.

That is how it is supposed to be.

Hemopsapien and I will work out the details of how I will be treated on Wednesday. There are many obstacles to hurdle, but we’ll hurdle each as it presents itself, focusing on the immediate part. It’s too much to focus on the whole.

I will be undeterred. So will Hemosapien.

We are veterans.

Ephesians 6:12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

What are YOU wrestling with? Today, I’ve abandoned wrestling with myself.

©2021 Mississisppi Chris Sharp

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