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Archive for the ‘Lives’ Category

The presence of hope…

We don’t often approach grief in our discussion of cancer and very rarely do we talk about loss. But the possibility is sometimes lurking there in the doorway.

Amanda Bennett brings to TED her own story of love, diagnosis, pursuit of recovery, and the act of letting go. in this video, she does admit to the reality that “the best doctor in the world has never succeeded in making anyone immortal.”

But she also adds that “the overwhelming presence of hope isn’t denial – it’s part of our DNA as humans.  And it’s time our healthcare system started accounting for the power of that hope.”

A lovely story told:

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A random walk…

It comes down to this: we cannot find truly ethical guidance in a nature shaped by evolution. Natural selection is random—random as to the mutations that produce variation, random as to the accidents of circumstance that make one variant adaptive and another fatal.

The very brief quote above is from a very long essay by Thomas de Zengotita on the Ethics and the Limits of Evolutionary Psychology. But it started a process of thought that went to my alter ego as a cancer survivor as well as an occasional counselor. A question that always comes up, either for physicians or on forums, is “what are my chances?”. The intent of the question is obvious – the hidden word is “survival”.

The answer can only be given as a statistic. But the truth is that the answerable question is “what are the chances?”. The physician can’t truly answer you as to what your particular chances are. That question is unanswerable. The science is that the human body is made up of anywhere between ten to 100 trillion cells made of billions of bits of genes. What if, after all of the research, clinical trials, and bioscience exploration, after all of the surgeries and chemos and radiation treatments, it turns out that cancer is nothing more than a random act of nature?

There is no horror in this. Only that stamping a statistic on your chart is an exercise in biological futility. To ask that question – what chance do I have – is offering the opportunity to have your hope taken away from you. That’s something that should never happen if only because there isn’t a single physician or researcher that can ever answer that question.

As random an act as cancer might be, so it can be with cure. Never ever deny yourself that bit of opportunity.

zola seen at Altamira
gallery and gifts
Islip, NY

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Near misses…

gladwell– excerpted from David & Goliath, by Malcom Gladwell

To put the above in the proper context, Gladwell was relating the experiences and the background of a researcher dealing with childhood leukemia cases. At the time, there was very little relief available – but the researcher had an idea that had consequences both miraculous as well as discouraging. It was in that defeat, this physician faced his greatest fears and emotion. But because of earlier trauma that he had in his own life, and the hardening that had occurred, he was able to get past that emotion towards cure.

The remote misses and near misses are connected back to that in the work done surrounding the effects of the bombing on London in WWII. The remote misses are the ones who were aware of the attacks, “the people who listen to the sirens, watch the enemy bombers overhead…hear the thunder of the exploding bombs…But the bomb hits down the street or the next block over.”

The near misses “feel the blast, see the destruction, are horrified by the carnage, perhaps they are wounded, but they are deeply impressed.”

It’s almost too easy to relate this to cancer. I’ve always said that cancer is both an emotional as well as a physical disease. Although the healthcare industry is finally recognizing the trauma of both diagnosis and treatment, patients, survivors, and their caregivers live within it. We’re observers or we’re engaged. We’re either remote or near misses.

But do we as patients and survivors become hardened by the experience? For one, I think it takes years to assimilate what happened and how we survived it. But to me, it’s both a hardening and a softening. Speaking for myself, I’ve become more sensitive to what happens around me. More sensitive to experience, to images, to quite literally relive my own cancer experience each time I sit with a patient and  listen to their own story of frustration, anger, fear, and trauma both virtual and physical.  The hardening is to be able to listen and to respond with my own words and images, to provide a depth of experience that arises out of my own trauma and face it again.

I think it’s a bit of a zen approach – light doesn’t exist without dark, cold doesn’t exist without heat. Hard doesn’t exist without soft. We need both to understand, to provide counsel to ourselves and to each other.

The difficulty then is finding the right balance.

stone man stone man
roslyn ny
© Jeff Kopito

 

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Staging…

Amy Berman, a geriatric care expert and cancer patient, is interviewed about her diagnosis of Stage 4 inflammatory breast cancer:

Most people go to their clinician, and they wait to be told what to do. They don’t ask about what the potential benefits are, what the different options are, what it’s going to make them feel like now, what it will make them feel like later.

Not only just their diagnosis, their prognosis: What’s the likely course of the disease, and will anything that you’re doing change that? Nobody knows for sure. But I think it’s fair to say that these clinicians have a tremendous amount of experience and understanding what the likelihood is. There certainly is a lot of evidence to tell people what likely will happen. We consumers are entitled to that very basic information. We are part of the decision-making because we’re the ones who live with the consequences.

Cancer is an incredibly complex disease that involves both clinical and emotional components – and we’re very rarely helped with the latter. We do have patient support groups that step into this gap with their depth of experience and street knowledge. But when it comes to a finite diagnosis, or the grief stage that follows either in tandem or after, we have great difficulty confronting the issues with ourselves and with each other.

Communication, the component that we often complain is missing from the patient-physician relationship, sometimes fails us in this conversation. We are at once convinced of the greater mythology of cancer and its uncontrollable and unconquerable nature as well as our need to constantly seek second, third, or even fourth opinions while continuing to look for cure.

The interview brings some of these issues to the front especially those of pain management and support therapies in a first person account. It also discusses moving treatment from “curative” to “carative” where some of us will live with the disease rather than trying to eradicate it.

I truly have no idea what my decision would be if i was faced with a definitively poor prognosis. I tend towards the aggressive and would never want to be accused of “giving up” or “surrendering” to the disease. But that ‘s just language that fits neatly into the military mindset of doing battle. And cancer is just not that tidy.

Maybe its time we added that to the communication process as well.

hawthorne Artist in Plein Air  1910
by Charles Webster Hawthorne

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Saving and spending…

time copy– philosopher Lucius Annaeus Seneca in a letter to his friend

featherphoto © Jeff Kopito

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For t♥day…

It’s worth thinking about…

Married 30 years this past summer…goin’ for another 30…tweet!

[h/t to Paul Levy…]

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Pinked off…

I’ve written before that I don’t agree with turning cancer into a festival. I don’t participate in marches, walk-a-thons, parades or spin cycle events. I also believe that cancer shouldn’t be considered merchandise either. Although it’s empowering to identify cancer with a color like pink, I don’t believe it belongs on Cheerios cereal, Mike’s Hard Lemonade, Eureka vacuum cleaners, or perfume bottles. My own company was approached by a group that wanted us to help them merchandise pink potato chips.

The power of pink has its unintended consequences – the majority of attention and research dollars seems to go to breast cancer as if that is the only type of cancer we’re  struggling with. And maybe there’s a bit of gender politics in it – attacking the breast is attacking the female and the threatening associations that come with it. Breast cancer, quite literally, attacks motherhood itself.

I found it quite unusual when Komen attempted to cut off funding for breast screenings by Planned Parenthood since that literally threatened the breast that they were trying to protect. Most especially since cutting off  those funds would now cut off the opportunities for screenings for women who ordinarily wouldn’t be able to get them. And the decision to cut those funds was based on an “investigation” being conducted by a congressman from Florida.

Even if the investigation turned out to be just another act of political pandering, there is guilt assumed. Which brought the Komen foundation down that same slippery slope.

There is no denying the fundraising juggernaut that the Komen foundation is. They have created a brand that is so powerful, that people believe just by wearing the color pink they can cure cancer. But that powerful muscle has been dragged into an arena where the waters are far more polluted with politics and dogma than with science. The fallout from their decision, and their sudden reversal, isn’t over. What the final impact will be on their outreach, on the agencies they support, and even on their own organization is yet to be felt.

One thing is certain – the color pink will take on a different meaning.

Portrait from The Scar Project © David Jay

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