Category Archives: Cancer, our experience thereof

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:

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.

Chemo Chronicles: Last session today [maybe]

We’re scheduled for the final of our twelve chemo sessions today, with a last dose of gemcitabine hydrochloride to begin this morning at 10:30.

We’ve been nauseous the last couple of days, in part because we’re also taking two powerful antibiotics to combat a nasty subcutaneous cyst that’s sprouted up in our right forearm.

The drug’s we’re taking for that are sulfamethoxazl and cefadroxil, and when the doctor told us they could cause diarrhea, pour response was “That’s not a bug; it’s a feature.” [Seems the cisplatin has been binding up our bowels. . .]

UPDATE: Five hours on the IV and we’re done!!!!

Chemo Chronicles: Double Whammy woes

We had the last of our Double Whammy sessions 2 April, combining our last massive dose of cisplatin with the first of our three remaining doses of gemcitabine hydrochloride. The noxious brew is designed to prevent the spread of the aggressive but rare micropapillary carcinoma that cost us our bladder [we lost the prostate too, but to a much less noxious and well-contained adenoma].

Last week’s session was the last off four Double Whammy treatments, each one worse than its predecessor.

Prior to the last session, we’d been able to contain the nausea that invariably follows a cisplatin dose, though constipation caused by the drug and the anti-nausea meds had forced an emergency room trip after the first session. We found a combination of cannabis cookies and atavan managed to keep us eating. Right up until last weekend, when we couldn’t keep anything down, including medicine [or even the saliva we swallowed]. That resulted in three days of misery, including two in which we literally kept neither food nor fluid down.

Ancdf so another trip to the emergency room Monday night, where we received anti-nausea medicine, two liters of salt water, and a hefty dose of magnesium. One friend took us to the hospital and a second friend stayed with us throughout, and we felt much better by the time we got home.

We were back for our gemcitabine-only session Tuesday afternoon, and so far so good.

The saddest part of the ordeal was the fact that we were unable to play good host for elder daughter Jackie, when came up from LA with spouse Krys to spend the weekend. Jackie’s due to birth a daughter in July, just about the same time we’re due to have recovered from the chemo.

Also appearing for a brief visit was younger daughter Sammi [corrected, see Comments]. Here’s a snap we grabbed . We apologize for the quality, but we weren’t in top photographic form:

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

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