Chemo Chronicles: With a bonus chart, too


We begin with this chart, created with data from the 1998 Johns Hopkins Precursors Study and reprinted from Montclair Socioblog, where it was posted as part of an item headlined “How Do Physicians and Non-Physicians Want to Die?” from Lisa Wade, professor of sociology at Occidental College:

BLOG CHemo chronicles

First, note that of doctors surveyed 15 years ago about what they’d do if “on the cusp of death and already living a low-quality of life,” about 85 percent would’ve said no to chemo, while gobbling down pain pills. And the same for many of the other heroic treatments regularly featured in big- and small-screen drama.

Wade turns for clues to USC professor and family medicine doctor Ken Murray, writing:

First, few non-physicians actually understand how terrible undergoing these interventions can be.  He discusses ventilation.  When a patient is put on a breathing machine, he explains, their own breathing rhythm will clash with the forced rhythm of the machine, creating the feeling that they can’t breath.  So they will uncontrollably fight the machine.  The only way to keep someone on a ventilator is to paralyze them. Literally.  They are fully conscious, but cannot move or communicate.  This is the kind of torture, Murray suggests, that we wouldn’t impose on a terrorist.  But that’s what it means to be put on a ventilator.

A second reason why physicians and non-physicians may offer such different answers has to do with the perceived effectiveness of these interventions.  Murray cites a study of medical dramas from the 1990s (E.R., Chicago Hope, etc.) that showed that 75% of the time, when CPR was initiated, it worked.  It’d be reasonable for the TV watching public to think that CPR brought people back from death to healthy lives a majority of the time.

In fact, CPR doesn’t work 75% of the time.  It works 8% of the time.  That’s the percentage of people who are subjected to CPR and are revived and live at least one month.  And those 8% don’t necessarily go back to healthy lives: 3% have good outcomes, 3% return but are in a near-vegetative state, and the other 2% are somewhere in between.  With those kinds of odds, you can see why physicians, who don’t have to rely on medical dramas for their information, might say “no.”

Now before we were diagnosed with a particularly nasty form of bladder cancer, along with a more mundane prostate cancer, our quality of life hadn’t changed appreciably, and the only reason we’d gone to the doctor was puss and occasional blood in the urine, without any physical discomfort.

Within weeks we were bladderless and prostate-free, and getting used to the presence of an often-leaky bag self-adhered to the edge of the small circle of pink, puckering intestine that now served as a conduit for the elimination of urine.

Then, just as we’d gotten used to the care and treatment of the ostomy bag and curbed the frequent leakages that were just so damn inconvenient, we started chemo.

So it’s quite accurate to say that it was the chemo itself which brought about that approach to “the cusp of death” along with “a low-quality of life.”

A friend who’s a biology prof noted that the chemo brought us onto the edge of life, and spending most of our days bed-bound and wracked by fatigue, adrift upon waves of nausea. The prescribed drugs that brought the nausea under control brought constipation — once for nine days — ended only by an ER enema. It was cannabis that made life tolerable, keeping the nausea under control without the misery of frozen bowels.

We’re two-and-a-half months off chemo now, and the nausea’s long gone and energy’s coming back. What’s left of our hair has, after the debilitating and depilitating chemo, turned white, and we find new lines on our face, chemically etched.

Oh, and we’ve lost a fair amount of our hearing, and we’ve sustained about a fifty percent loss in feeling on the soles of our feet — which feel instead the tingling numbness that you notice when you start to recover feeling in limbs “fallen asleep.”

Call if [semi] deaf and numb.

You confront your mortality when you’re on chemo, sitting hooked to IVs in comfortable reclining chairs in small pleasantly sun-lit wards staffed by compassionate nurses in the company of a half-dozen other fellow travelers on a pharmacological excursion to the margins of life itself.

Confronting mortality as an unemployed journalist subsisting [barely] on Social Security in a ravaged economy makes for something of an adventure.

We’re told the chemo meant the difference between fifty/fifty and one-in-five odds of a metastasis of that nasty micropapillary cancer that gobbled up a bladder and at least one lymph node. To catch any recurrence at an early stage, regular CT scans and chest Xrays — using carcinogenic radiation — are to be regular features of our existence.

What then if some future imaging session catches a sign of spread, then confirmation by biopsy? Would we do it again?

We don’t know.

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4 responses to “Chemo Chronicles: With a bonus chart, too

  1. I know you have suffered dreadfully, and no-one should have to go through that. Nobody!

    For you – if you can find a way – would be to look forward and on the bright side.
    You are still writing, and thinking! So Great!

    While it is important that you write out your experience for you and for others to learn from, – going back on that journey again and remembering must be painful

    If you are able – find some exercise. Anything you can do – and that will help mood and pain and regulate appetite. A Yoga Class. Swimming, walking and spa, sauna, steam, jacuzzi baths if you enjoy that – some people don’t.

    I am glad cannabis helped and took away the nausea. Perhaps some of the syptoms will go away with time or with a little exercise to relieve the anxiety.

    Time to live again, Small steps each day! Seize the Day! & Be & Stay well!

  2. What patients consider “good quality of life” seems to differ from what the doctors consider. To most it is just common sense that a drug that makes you throw up, and lose your hair, and wrecks your immune system is not improving your quality of life. Chemotherapy can give you life-threatening mouth sores. People can slough the entire lining of the intestines! One longer-term effect is particularly tragic: people who’ve had chemotherapy no longer respond to nutritional or immunologically-based approaches to their cancers. And since chemotherapy doesn’t cure 96% to 98% of all cancers anyway…People who take chemotherapy have sadly lost their chance of finding another sort of cure.

  3. I am not sure about Lincoln’s post above where he said “People who take chemotherapy have sadly lost their chance of finding another sort of cure.”

    This seems to be a no hope statement which I hope is untrue.

    Back it up with statistics and medical data – and if there is none – then perhaps the statement has no basis and that there is hope after chemotherapy after all.

  4. My mother was diagnosed with liver cancer supposedly last Friday
    by today she passed away in hospital. It was too late in her life for the hospital doctors to try anything apparently.

    She had been in hospital two or three times in the last year but they didn’t find any liver cancer then. I am not sure why?

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