Monday, October 8, 2012


I am revisiting an old theme on worry and decision making. Maybe it is the recent death of my dear dear friend that evokes my need to again look inward. Old themes for me, but I needed a refresher course in mindfulness.

When we have cancer in general and CLL in particular, it is easy to imagine that any minor issue represents the tip of an iceberg that is going to sink our ship.

At least it is easy for me.

I can worry that my clogged ear could be due to a salivary or lymphoid tumor compressing my right auditory canal. Odds are way against it, I am not  really too concerned, but still my ENT wants me to have a MRI and it is scheduled tomorrow.

Could my pain in my calf on the elliptical trainer be from a sore muscle or is the first warning of a blood clot? Worrying minds want to know.

Is my occasional cough a well recognized side effect of my blood pressure medication, or is it telling me to get a chest x-ray to rule out something more sinister?

Is my rash dry skin or an early infection? What does this or that pain mean?

I suspect that I am not alone in these mind games. Don't we all let our fears gallop ahead of us?

It is so easy to catastrophize when we have cancer.

Mark Twain is quoted as saying:

"I have suffered a great many catastrophes in my life, most of which never happened."

Still we are admonished to stay vigilant, so cultivating the place of awareness without the worry is the goal.

Aware and calm. That is the sweet spot.

Some tricks to getting there include recognizing that most bad things progress, so anything with ups and downs is likely not the grim reaper sending ahead a search party.

With the critical exception of infections in those of us who are immune compromised, most bad things are bad from the get go and waiting a bit of time does not often change the final outcome. A delayed diagnosis is almost never fatal mistake.

So I do my best to acknowledge and then gently dismiss most of my worries and only check things out when they hang on and on or they get really annoying. And I remained detached. As best I can.

Another place that we must cut ourselves some slack and show ourselves some compassion is the worrying we do about our choices. In CLL, we are blessed to have some time to ponder and consider our decisions. But that extra time can give us a chance to over analyze and agonize.

This doctor or that cancer center?

This supplement or that diet?

CT scan or no CT scan?

FISH or cut bate?

Watch and wait or treat early?

FCR or BR or a clinical trial?

Transplant or CAR-T?

Is it safe to travel to Kenya or China or next door, eat sushi or drink grapefruit juice, visit the sniffly grandkids or a friend in hospital?

These questions big and small never stop, but the second guessing should.

None of us nail it every time. CLL is a slippery disease and it is constantly morphing. Even the big name gurus famously can't agree on much.

So let us forgive ourselves when we make what might seem at least in the short term to be a wrong move, and simply learn from it and move forward.

Congratulate ourselves on the good choices. We are still here, aren't we? We still have choices, don't we. The real trouble begins when we run out of options.

So the uncertainty is a good thing. The only things that are completely ordered are dead or divine, and although I believe we all carry a spark of the holy inside us, we are all fallible and faulty. Heck, we have cancer, the poster boy for chaotic dysfunction at the cellular level.

Still we are bumbling our way forward, groping for answers. The path ahead actually looks wider and brighter with more options coming online at an increasing pace. New therapies such as ibrutinib (PCI-32765) or GS1101(CAL 101) or CAR-T or new MABS open more possibilities and even more decisions.  This is all good,

We need to share our experiences, good and bad with each other because we can't do it alone.

After all, we are all in this together.

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Anonymous Barbara said...

Brian i have been following your posts for years. I just lost my 46 yr. old brother to cll, his absence is heart wrenching.

He was one of the first on PCI-32765.

You captured the roller coaster ride so well, thank you for sharing once again at a profoundly difficult time for all of us.

May yours – and mine – be so long as to see the day when we can live our lives without cancer.

October 9, 2012 at 4:51 AM  
Anonymous Misty Weitzel said...

After spending half a day reading such discouraging and still perplexing works like "Abeloff's Clinical Oncology, 4th ed." it is from your words that I draw the most hope and where I will end the research part of my day! Thanks for being a source of inspiration for the new members of the club (none wants to join).

October 10, 2012 at 2:28 PM  
Anonymous Anonymous said...

And you do encourage me, too! Alison.

October 11, 2012 at 9:38 PM  

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