Category Archives: Cancer, our experience thereof

And now for something completely different

This time, it’s a story about cancer and ‘shrooms, those wonderful little mushrooms from which we derive psilocybin, a drug that opens the doors of perception with a gentleness and thoroughness radically different from the harsher effects of LSD [at least from our own considerable experience back in the Sixties, and a few times since].

And we’ve had our own battle with a very serious form of cancer [and one not quite so serious as well]. Sadly, we were devoid of access to the mushrooms where we fought out battles prostate and bladder cancers, and this video will make clear why we regret that lack of access.

From the New Yorker:

Magic Mushrooms and the Healing Trip

Program notes:

Eddie Marritz, a cinematographer and photographer in remission from small-cell carcinoma, was a participant in one of N.Y.U.’s Psilocybin Cancer Anxiety research studies. Marritz, and the researchers, take us through the experience.

Chart of the day: Cancer, plus added musings

Two stories from today’s London Telegraph caught our eye, mostly because they are of such imminent and eminent personal import.

They deal with something we’ve experienced firsthand, and in two forms: Cancer. Just over two years ago we lost bladder and prostate to the Big C, followed by a course of chemo that is still very much with us in the form of diminished hearing and loss of sensation in feet and, to a lesser extent, hands.

Dad had two types of cancer as well, starting with a tumor in a kidney in his early 60s that led to surgery. He survived that one, but it was the prostate that eventually got him, leading to death in his sleep under hospice care just weeks before his 91st birthday.

Mom was left fortunate, with a glioma diagnosed after she suffered an unaccountable collapse at home. They tried laser surgery, but the tumor was deep in her brain and dense with blood vessels. After a couple of laser zaps, the blood flood was so great they simply sewed her up.

Her last weeks were spent in a strange time slip. As one moment she was a child on a Nebraska farm, looking for her beloved cat, Jimmy Meadowmouse, then shifting abruptly to a child, eager for a trip to St. Louis, then again to her days as a school teacher in Bennington, Kansas.

It was a sad plight for a woman so intellectually vigorous and present-oriented.

Death, when it came for her, was truly a release.

For Dad, the first surgery was a life-saver, enabling him to live a vigorous life [he was still keeping house, going on long fishing trips, and mowing his yard before his last illness]. For Mom, surgery was a savage mutilation, shredding her dignity and leaving her bereft of the dignity that meant so much to her.

And for ourselves, surgery was a mixed blessing, removing the imminent threat of a virulently metastatic bladder cancer, but appreciably diminishing our hearing and sense of balance [a consequence of the neuropathy of the feet, which deprives us of some of the critical feedback need for delicate balance.

With that by way of preface, the first of those London Telegraph stories:

Cancer is the best way to die and we should stop trying to cure it, says doctor

  • Dr Richard Smith said cancer gave sufferers time to say goodbye and pain could be endured through ‘love, morphine, and whisky’

Cancer is the best way to die because it gives people the chance to come to terms with their own mortality, the former editor of the British Medical Journal has claimed.

Dr Richard Smith, an honorary professor at the University of Warwick, said that a protracted death allowed time to say goodbye to loved ones, listen to favourite pieces or music or poetry and leave final messages.

He claimed that any pain of dying could be made bearable through ‘love, morphine, and whisky.’

Writing in a blog for the BMJ, Dr Smith admitted that his view was ‘romantic’, but said charities should stop spending billions trying to find a cure for the disease because it was clearly the best option for an ageing population.

Wow, where to begin?

First, we’re all for that love-morphine-whisky triad, and anything else that helps get the dying through the night. But as for the notion of giving up the search for cures, hell no!

On that point, we’re solidly with the Dylan Thomas school of rage, rage, raging against the dying of the light.

We do have plenty to say about Big Pharma and profiteering from tragedy, but we passionately believe that the quest to relieve human misery represents all that’s best in us, while insatiable greed reflects the very worst.

Which brings us to the second Telegraph headline, and through it, to today’s Chart of the Day:

Most cancers are caused by bad luck not genes or lifestyle, say scientists

  • Scientists at John Hopkins University School of Medicine in the US found that the majority of cancers are not linked to environment or lifestyle

For years health experts have warned that tumours are driven by a bad diet, lack of exercise, or gene errors passed down from parents.

The government even set up its ‘100,000 Genomes Project’ to try and find the genetic causes of many rare diseases and cancers.

But now a study has shown that most cancers are primarily caused by bad luck rather than poor lifestyle choices or defective DNA.

Researchers found that two thirds of cancers are driven by random mistakes in cell division which are completely outside of our control.

They found that the more cells need to divide to stay healthy, the more likely cancer is to develop.

And now, that chart, which accompanied the article:

BLOG Cancer

Celebrity doc does cannabis turnaround

Following up on our previous post, here’s a stunning turnaround by television’s most famous celebrity doctor, Sanjay Gupta, on medical marijuana. Talking with CNN’s Piers Morgan, Gupta apologizes for his previous opposition.

We also learn that both Gupta and Morgan have smoked the stuff, with Gupta apparently experiencing the typical first-time user paranoia.

From CNN via Mox News:

But the Obama administration continues the war on medical pot, even though the Prez toked like blast furnace during his teen and college years with no apparent impairment to his ability to function in society.

His Justice Department is busy raiding cannabis clinics and seizing the buildings that house them, a practice first launched by his predecessor, a former alcoholic. But, heck, they’ve got to fill those increasingly privatized prisons to keep their donors happy and keep those cops armed with the latest gadgets, the creations of other contibutors.

As for the gravely ill who benefit so much from the ancient herb, fuck ‘em, right?

As a personal note we should add that cannabis was the only thing that kept our nausea to manageable levels during our recent cancer chemo regimen, and it’s the only thing that has kept our rheumatoid arthritis and the attendant symptoms within tolerable limits.

And, yes, we do enjoy the buzz.

BLOG 14 September Obama

Chemo Chronicles: The latest neuro news

One of the most frustrating side effects of chemo has been the loss of sensation in the bottom of the feet, an instance of the peripheral neuropathy often accompanying the heavy duty poisons used to burn out malignancies.

In addition to the neuropathy, we’ve also contracted a case of edma in the lower right leg, with the foot appended thereto sometimes swelling to the point our battered old sandal doesn’t fit.

So it was with interest we read this in a piece at science 2.0:

Some of the most disturbing findings of recent studies of cancer survivors is the apparent prevalence of chemotherapy-associated adverse neurological effects, including vascular complications, seizures, mood disorders, cognitive dysfunctions, and peripheral neuropathies.

In addition, chemotherapy triggers changes in ion channels on dorsal root ganglia and dorsal horn neurons that generate secondary changes resulting in neuropathic pains.

Although a number of protective agents have been developed, their effects are not quite  satisfactory. Chemotherapy drugs are also implicated in changes in hippocampal neurogenesis and plasticity.

Read the rest.

Our neuropathy isn’t the painful sort, beyond that peculiar tingling characteristic of that transitional phase when a limb fallen asleep is tingling back to life. But feeling in the soles is critical to balance, so we’re moving a bit more carefully and awkwardly of late.

The research shows one potential benefit of chemo beyond cancer treatment. Patients who’ve been chemoed for some forms of cancer have significantly lower rates of Alzheimer’s. Sadly, micropapillary carcinoma of the bladder and adenoma of the prostate weren’t on the list. On the other hand, no ancestors were afflicted with the devastating ailment.

But the CT scan and chest Xrays were clear, and so we’ll cruise along until we lie down for the next scam and thrust our chest against the plate of the Xray machine down the hall, undergoing burst of carcinogenic to see if any tumors have sprouted up since the last round.

We do harbor questions: Does chemo affect other parts of the brain than the hippocampus? And, if so, what are the effects?

The hippocampus itself plays a central role in long-term memory, which also raises questions about the reduced incidence of Alzheimer’s. We’ve noticed a somewhat diminished ability to concentrate, which is the main reason we’ve not done the longer posts we did prior to chemo.

Acutely aware of our mortality — being reminded of it every time we have to drain the rine from the bag adhered to our thorax — we stumble along.

Hamlet had the choices right: 2B or 2B. We’ve chosen the former, knowing full well the latter looms larger by the day.

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.

South Berkeley Street Seens: The pee-bagger

Back in the mid-1950s when esnl was a pre-teen in a small Kansas farm town, boys in search of some ready cash for a bottle of pop or a fourteen cent movie matinee ticket would prowl the roadways along pre-Interstate U.S. Highway 40 for pop bottles, each redeemable for two cents.

Fifteen minutes work might net you a quarter, enough for a Saturday matinee, a Coke, and a bag of popcorn.

But you quickly learned not to pick up some bottles. . .the ones with the yellow liquid inside.

On our way to a morning of what was promised to be the first of an ongoing series of CT scan appointments conducted to spot any spread of the nasty little cancer that cost us our bladder [another sort of cancer consigned the prostate to a similar excision, making our surgery last winter a two-fer].

All of which is to indicate that our mood was rather somber as we set out.

And when we walked to our car, here’s the scene from the driver’s seat, and evidence of a previously unsuspected [by us] use of plastic shopping bags:

12 June 2013, Panasonic DMZ-ZS19, ISO 160, 4.3 mm, 1/60 sec, f4.2

12 June 2013, Panasonic DMZ-ZS19, ISO 160, 4.3 mm, 1/60 sec, f4.2

The cat scan done, we returned to find the only vacant parking space near home was the very one we’d set out from eighty minutes earlier.

We received some good news later in the day from our urologist: “CT scan looks great.” Ditto for the chest Xray and blood tests we’d done yesterday.

Chemo Chronicles: It’s been a long, long ride

Our last chemo session was three weeks ago tomorrow, but we’re only now finally starting to come back from what was the final and roughest of our four courses of three-treatment regimes.

And the irony is, it’s only been in the last ten days or so that the hair has really been falling out, so much so that we’re essentially bald on top, whilst our moustache has lost about two-thirds of its volume, as you can see. . .

6 May 2013, Panasonic DMZ-ZS19, ISO 400, 4.3 mm, 1/40 sec, f3.3

6 May 2013, Panasonic DMZ-ZS19, ISO 400, 4.3 mm, 1/40 sec, f3.3

But, to borrow a phrase from a favorite film, The Dude abides.

Our of the last 12 days or so, we’ve only felt human on two days, but we finally have the anti-nausea regime down pat, and since the flow of toxic chemicals through our veins has ceased, we actually look forward to starting to recover some of our energy.

Hopefully we’ll get back to posting more regularly as well.

We learned something in our last oncologist visit visit: Most folks don’t finish their full chemo regimen. At some point, the body crashes under the assault and the treatments are stopped. We made it all the way through and the doc says that while me may feel like hell, we’re actually pretty strong. Nice to know, but it doesn’t really help when you’re wracked by the dry heaves, having thrown up everything, right down to the bile.

So bare as our cranium may be, we’re on the way back. Or so we’re told.

For previous entries in the saga, see here.