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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

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

 

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

Saving and spending…

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

featherphoto © Jeff Kopito

Just the details…

From Shinto by Jorge Luis Borges:

When misfortune confounds us
in an instant we are saved
by the humblest actions
of memory or attention:
the taste of fruit, the taste of water,
that face returned to us in dream,
the first jasmine flowers of November,
the infinite yearning of the compass,
a book we thought forever lost,
the pulsing of a hexameter…

When I was well into recovery, my oncologist had asked me how things were going. I broke into a litany of complaints about my job, the economy, car trouble, the heat, and on and on. He stood back a bit, smiled, and said “When you don’t have your health, you have one problem. When you do have your health, you have many problems.”

When faced with the diagnosis of cancer, your vision becomes exceedingly narrow.  Your world shrinks into treatment times, side effects, medications, frustration and worry about recovery. But there is a point when you move from a highly distracted point of view to something a bit more focused. And that’s when you begin to discover the smaller things you’re surrounded with always taken for granted.

The taste of sweet or salt, to read a book, to enjoy the company and comfort of devoted family and friends becomes highly prized and sought after. The revelation for me came one morning, about two months into recovery at home after everyone had left for work one morning. Watching the morning news, I saw some footage of a line of red lights on the expressway, creeping their way towards the bridge. I could sense the frustration of the drivers as they sat in their cars in their rush to work, the radio tuned to the traffic reports, the steam from the cup of coffee in the holder rising over their drumming fingers on the console. Yet, those were the very things that I wanted at that moment – to trade places with them, to listen to the radio, to sit quietly in the car on the way to an appointment, to enjoy that cup of coffee. To have an ordinary day.

There is no doubt that the very roots of our existence are shaken with a cancer diagnosis. If there’s any lesson to be learned it’s that our time here is finite. That the things that are enjoyed are ephemeral. Maybe that’s why I picked up a camera again nearly 40 years after putting it down. To be able to capture that essence of a moment, that smallest detail that catches my eye. Because, after all, it’s really those small details that are most important, that make us most human.

The saying goes “don’t sweat the small stuff”. But do pay attention.

pink whitepink white
photo © Jeff Kopito

[h/t to David Kanigan for the lead into the poem…]

CT vs. MRI…

Over at CancerCompass, I sat in on  a recent discussion of unwanted radiation exposure from X-rays and CAT scans. The topic was, of course, how many scans have you had since treatment ended, how soon after treatment ended, and what types of scans did you have. As for me, I had my first scan about 3 months after ending radiation therapy and was told that often some false positives might show up due to inflammation. It wasn’t the case immediately although I had a few scares about 2 years down the road.

The discussion also raised some questions about what types of scans are used and why and exactly what are the benefits and the risks. With a bit of research, I found an easily understood side-by-side chart of CT Scan vs. MRI, what the comparative radiation exposure was, what they’re used for, and what they detail.

There are also several other comparisons to jump to including CT  vs. PET, MRI vs. X-ray, etc.

And then there’s still the interpretation…

Worth a view…never mind the addies…the net is really just one huge marketplace…

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som_rnhrd_2_624x544 Dr. Oliver and Mr. Pierce examining patients
painting by William Hoare, 1761
From the collection of the Royal National Hospital for Rheumatic Diseases