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 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.

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

Chemo Chronicles: Into the final round

Grabbed before morning ablutions four days after the last Double Whammy, our bathroom mirror autoportrait reflects a significant diminishing and lightening of our once modest hirsute adornment.

6 April 2013, Panasonic DMZ-ZS19, ISO 400, 14.2 mm, 1/13 sec, f5.1

6 April 2013, Panasonic DMZ-ZS19, ISO 400, 14.2 mm, 1/13 sec, f5.1

Chemo Chronicles: The last Double Whammy

Tuesday marked our fourth and final Double Whammy session, that nauseating one-two punch of two drugs the Kaiser docs hope will prevent a recurrence of that nasty and highly aggressive micropapillary carcinoma that claimed our bladder. [We lost our prostate at the same time to an adenoma that hadn't, unlike the carcinoma, metastasized to a lymph node.]

The cisplatin that constitutes the heavier of the two compounds went in without a fuss, but the IV in the back of our right hand wouldn’t tolerate the gemcitabine hydrochloride that’s the other half of the one-two punch and the sole drug in our final two upcoming weekly chemo sessions.

Simply put, the gemcitabine fostered an instant and excruciating pain as soon as the infusion began. It felt, quite simply, as though someone was trying to drive a spike into the back of our hand.

It had taken four sticks and two nurses to finally plant the first IV, and now a third nurse installed a second needle in the underside of the forearm, and the drug went in without a hitch.

The delays and the need for an ultrasound of our right leg to look for blood clots [none found] brought the day at the hospital to seven hours, but a steadfast friend stayed with us throughout.

We were back at Kaiser today for another infusion, this one of magnesium to restore levels brought down by the chemo. We’ll be back again tomorrow, though just to have a couple of liters of salt waltder flushed through our veins.

Meanwhile, here are some shots we grabbed yesterday as we waited for our ride.

Overcast skies set the tempo for the day. . .

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 4.3 mm, 1/500 sec, f4

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 4.3 mm, 1/500 sec, f4

The morning light added an eerie cast to the leaves. . .

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 10.3 mm, 1/80 sec, f4.7

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 10.3 mm, 1/80 sec, f4.7

And imparted a peculair cast to the moss clinging to its trunk. . .

2 April 2013, Panasonic DMZ-ZS19, ISO 320, 20.6 mm, 1/80 sec, f5.3

2 April 2013, Panasonic DMZ-ZS19, ISO 320, 20.6 mm, 1/80 sec, f5.3

Finally, a bit of street stratigraphy. . .

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 4.8 mm, 1/250 sec, f3.4

2 April 2013, Panasonic DMZ-ZS19, ISO 100, 4.8 mm, 1/250 sec, f3.4

Headline of the day: Hey, man, that’s my bag!

Apropos of today’s Chemo Chronicles post, a headline from a story from the London Mail that makes a reality of a friendly crack made to us by our elder daughter about our own much less glamorous urostomy bag :

Victoria’s OTHER Secret: Designer creates world’s first lingerie colostomy bags as they often put partners off

H/T to Jay Sheckley.

Chemo Chronicles: Heading into the final round

Once upon a time, back when we’d finally got out little blog fired up and running, we posted anywhere from five to twenty-two items a day, seven days a week.

Then, five months ago, we discovered some blood and pus in our pee, then a couple of trips to the doctor’s office and a hospitalization later, we were without both bladder [to a very aggressive and relatively rare micropapillary carcinoma] and prostate [thanks to an early stage adenoma].

We also gained something, a new, small circular extrusion of moist pink tissue a few inches to the right of the ol’ bellybutton.

The extrusion, called a stoma, is the end of a section of gut hacked out during surgery and moved to a new location to serve as living plumbing to convey the output of our kidneys into a self-adhesive ostomy bag, an external plastic replacement bladder, complete with its own drain valve.

Unlike the real bladder, the bag-on-a-bod has no nerves to remind us when it’s full. That, in turn, can lead to accidents, as when the pressure of contents exerts sufficient hydraulic pressure to breach the seal twixt bod and bag. [Perhaps it’s just karma from all those leaks we so assiduously cultivate in our journalistic incarnation].

All of this is preamble to our last Double Whammy session.

During the surgery, the doctor also grabbed 20 lymph nodes adjacent to the bladder. Nineteen were pristine, but the twentieth was colonized by the very nasty little micropapillary cancer. Both the surgeon and the oncologist said that without chemo, the odds of metastasis were at least fifty percent — dropping to twenty percent with chemo.

Because it’s relatively rare, there’s no set chemotherapy regimen. The one we opted for consists of an initial Double Whammy session, with intravenous doses of both cisplatin and gemcitabine hydrochloride.

Then, a week later, comes the first of two weekly gemcitabine-only sessions.

Then comes a week off, followed by another three identical sessions. Then come two more repetitions of the cycle, for a total of twelve chemo sessions over a total of sixteen weeks.

It’s the initial Double Whammy session that hits hardest. Friends were present for our first two Double Whammys, but we did the last one alone. In addition to a one-liter cisplatin bag and a smaller gemcitabine bag, the session also includes at least a liter-and-a-half of saline.

Which brings us back to that other bag. . .

In our first two sessions, the presence of friends kept us awake — and thus conscious of the bag. But the last session, we were alone, since the friend who’d planned to accompany us had come down with a virus. Viruses, we learned, aren’t encouraged in chemo clinics.

So we did the session alone, falling asleep somewhere around the second hour of the five-hour treatment.

We awoke feeling pleasant warm in our southern exposure. No, wait. Damply warm.

We had just wet our pants for the first time since second grade.

It all went downhill from there.

Chemo’s been a drag. Each successive round has been more enervating, though we’ve been eased somewhat by our own doctor-approved cannabis-augmented anti-nausea regime, and by a blood transfusion and the addition this last cycle of two or three days of one-to-three-hour IV hydration infusion after each of the chemo sessions. We also seem to have a handle on the cisplatin-induced constipation that landed us in the emergency room nine days after our first Double Whammy.

But the sheer exhaustion has been overwhelming. And what’s worse, it’s hit hardest at our ability to write.

Hence the infrequent postings compared to our pre-surgical days.

There’s one round left and it starts Tuesday with the last Double Whammy, followed by two last rounds with gemcitabine. Plus hours in the clinic reclining chairs on days following to keep the fluids up.

And, for the occasional upchuck, we keep the plastic I Can’t Believe It’s Not Butter tub on the bed beside us. [And if we use it, you really won’t believe it’s butter.]

While them chemo ends 16 April, we hear that the energy won’t come back for a couple of months more — perhaps fully by July, around the time a granddaughter is due.

Photos from a shopping expedition

We skipped another two-liter infusion session today because younger daughter Samantha was dropping by, a form of therapy much to be preferred. [We have infusion sessions already set for Thursday and Friday.]

During the afternoon, she accompanied us to the door of our local cannabis club, where we stocked up on Rhino Pellets, low-dose cannabis cookies which seem to keep the nausea away for six to eight hours. And without the constipating effects of other anti-nausea meds.

So we stocked up on cookies and other goodies, and as we were about to walk out the door, Sammi shot us.

13 March 2013, iPhone 4S, ISO 50, 4.28 mm, 1/20 sec, f2.4

13 March 2013, iPhone 4S, ISO 50, 4.28 mm, 1/20 sec, f2.4

Back home, she had us hold up another purchase, a four-dose bottle.

13 March 2013, iPhone 4S, ISO 500, 4.28 mm, 1/15 sec, f2.4

13 March 2013, iPhone 4S, ISO 500, 4.28 mm, 1/15 sec, f2.4

Chemo Chronicles: It’s been a really bumpy ride

It’s been a week since our last post, all because of our third Double Whammy session 5 March was followed by a radical drop in our blood hemoglobin levels, leaving us feeling, well, utterly devastated and incapable of focusing our thoughts to the degree required by coherent writing.

A day after the session, whilst undergoing a new regimen of IV fluid replacement [two liters for each of three consecutive four-hour daily sessions] tests revealed the blood crisis, and on the following day, last Friday, two pints of red blood cells were added to the fluids.

We felt better for a day. But just a day. That old cisplatin, the heaviest gun in our chemo regimen, knocks us on our ass every time, with impacts greater after each successive round.

By yesterday, when it came time for our gemcitabine-only chemo session, the hemoglobin was still well above the red line minimum, while new anti-nausea medications were added to the regime, along with more bowel-stimulating meds to counteract the effects of the anti-nausea drugs and two-and-a-half liters of more saline solution to keep the fluids up, another anti-constipation measure.

Oh, and just for the record, the constipation increases the nausea. . .

So that’s the way it rolls here in ChemoLand, where first surgery [removing bladder and prostate], then chemical assault, have been deployed against that aggressive ["high grade" in oncology-speak] and relatively rare micropapillary carcinoma discovered last October after a bit of blood appeared amongst the urine in the toilet bowl,

The irony, of course, is that we didn’t experience the slightest pain until we were catheterized for the first look inside the bladder, where the camera spotted an ominous form and a remote-controlled blade sliced off the hunk of growth that would firm the worst.

Then came the surgery, five hours or so, including the temporary emplacement of another catheter, with the pain partly abated by a Fentanyl spinal bloc that spared us much of the pain.

We were sent home with a whole raft of Percocets after a short but disastrous nursing home stay. We took none, having discovered that our level of pain tolerance, previously low, had risen considerably.

But then, just as we were finally recovering from the surgery, came the chemo. . .all because that nasty little cancer had escaped to one of the twenty lymph nodes taken during the surgery.

Dispelling a rumor

We’re somewhat bemused by the words we hear a lot these days, wherein people say they’re confident I’ll beat this thing because we’re so strong.

Other words we’ve heard are “courageous” and “brave.”

Our initial response was self-deprecating, the sort of thing expected of someone raised in a Calvinist household in a small Kansas farm town on the very first year of the Baby Boom.

We came to see that we are, in a peculiar way, strong. “You’re a pig-headed little Dutchman,” Dad used to say in frustration. So if strength equates to stubbornness, that’s probably true. But it’s also not a matter of choice. Nor is it always pleasant for those nearest and dearest [as when we walked away in anger from Sacramento Bee after they killed stories about political corruption in California, leaving our then-spouse and new mother of two to play wage-earner.]

Sure, we fought for the stories because we felt they were important enough for the public to know. But mostly we fought because we had no other choice. It was, quite simply, in our nature to do nothing else but fight, consequences be damned.

But courage and bravery — really?

We’re thought about the labels as they apply to our current, carcinomous episode, and we reject them.

To our mind, courage and bravery imply an element of volition, a choice. But more that that, they describe actions taken on behalf of others. Actions embodying the very thing Ayn Rand so vehemently despised, altruism.

Heroes, to us, are those who risk all on behalf of others. Our battle with cancer is strictly personal, waged on our own behalf. We just that pig-headed little Dutchman a few years on. There’s no volition involved. It’s just what we do.

A reporter who covered the White House back when Lyndon Johnson ruled the roost once told me that First Spouse Lady Bird Johnson once told him “Politicians should be born foundlings and die bachelors.” Perhaps that’s true of heroes as well.

Chemo Chronicles: It’s Double Whammy III

The view from our front porch at this morning at 7:41 as we set our for the third of our four dread Double Whammy chemotherapy sessions [of which we’ll hopefully have more tomorrow, depending on how bad we’re hit.

5 March 2013, Panasonic DMZ-ZS19, ISO 250, 4.3 mm, 1/60 sec, f3.3

5 March 2013, Panasonic DMZ-ZS19, ISO 250, 4.3 mm, 1/60 sec, f3.3

Chemo Chronicles: We’re halfway through it

The one singular feature of our course of chemotherapy is mental fatigue.

Simply put, the one-two punch of cisplatin and gemcitabine hydrochloride deployed again the metatstatic and highly aggressive micropapillary carcinoma that’s cost us our bladder [and the prostate as well, along with its own breed of slower-growing adenoma] leaves with the our giddy-up-go got up and gone.

Our hemoglobin levels have been declining, which is typical for the Double Whammy regime we’re following, and may require blood transfusions down the line.

We’re also getting two days of IV hydration following our next two [final two] Double Whammy sessions, each followed by two gemcitabine-only sessions.

The regime is experimental in the sense that the rareness of the micropaillary breed is such that there’s no standard treatment. Both our surgeon and our oncologist say that the chemo can cut our chance of another malignant siege from fifty percent to twenty percent.

Sometimes we find ourself wondering if the misery is worth the effort, but we persevere. Besides, we’ve got a a grandchild, currently known as Shrimpy, due in July and a daughter hoping for a grampa who’ll indulge said Shrimpy — a role that seems to come naturally to us [infants and cats seem to find us okay].

With family and friends to cherish and that damn sense of obligation we can’t seem to shake, we’ll hang on, miserable though we may be.

The worst may be yet to come [including the possibility of transfusions if steadily declining hemoglobin levels pass a numerical Rubicon], but we’ve been learning how to handle the worst of it.

That damn problem with writing

One significant impact of the chemo has been that inability to bring ourselves into heretofore normal writing mode, and that peculiar frisson accompanying the exposition of insights in coherent and meaningful patterns and insights drawn from experiences dictated in part by curiosity and compulsion to understand the embodied encounter with the grist of a life as it evolves under a unique constellation of forces and environments.

When we’re up to par, we live to write and we write to live.

Journalism’s been our way of exploring the world and asking the questions we’re impelled to ask on behalf of anyone who’s curious to understand forces at play in the world around them.

With a passion to understand and a bone-deep sense of obligation, journalism was just the ticket. Talk about your professional student — and getting paid for it, too!

All of which is to say that stringing together words is at the core of our identity.

But as the chemo strikes at our basic energy level, we find we have little problem with reading [which comes easier than screen-watching] or with conversation [which, when done right, is itself energizing], when it comes to writing out thoughts, we’ve been stumped.

Hence the light blog postings, and the end of those comprehensive EuroWatch and GreeceWatch reports.

Cannabis seems to help, abating both the nausea and allowing a greater-than-chemo-typical ability to sling words.

One thing I never would’ve imagined back in the 1960’s: My first legal cannabis purchase came with a senior discount. . .

Chemo Chronicles: And that’s the way it is

First, a message seeming tailored just for esnl — and anyone else undergoing cisplatin chemotherapy:

We had our second Double Whammy session with the peculiarly nasty cisplatin and the less nasty gemcitabine last Tuesday [5 February], and it was a helluva lot worse than our first, with the worst side effects starting a day sooner and ending two days later than our first session.

We back for the first of two gemcitabine-only sessions yesterday [12 February], where we learned that cisplatin’s side effects tend to worsen with each new round.

Marty Robbins seems to be singing about our experience in a song we’ve loved since we first heard it in a trailer in Alamosa, Colorado, so many decades ago:

When the worst of its upon us, another Country song comes to mind.

From Hank Williams and The Drifting Cowboys:

But when the funk lifts, we’re reminded of another Country classic, from Bob Wills & The Texas Playboys:

We’ve got two more cisplatin and gemcitabine Double Whammy sessions coming up, and five more gemcitabine-only sessions.

After that, it’s periodic checkups for any recurrence of that nasty and very aggressive micropapillary carcinoma that cost us our bladder and spread to at least one lymph node. Our other cancer, adenoma of the prostate, hadn’t metastcized, and was resolved with the organ’s removal at the smae time the bladder went.

But what the hell. Let’s close on an upbeat tune, another Bob Wills classic recorded in 1936:

You can find all our previous chemo posts here.

Chemo Chronicles: Today in a nutshell

Today, the bar ate us Dude. The ol’ Double Whammy at work.

Chemo Chronicles: Round Two begins

Today marked the start of the second of our four four-session rounds of chemotherapy designed to head off the spread of a very aggressive “high grade” micropapillary carcinoma spawned in our bladder and escaped to one of the twenty lift nodes they took along with the bladder and prostate.

Because the cancer is relatively rare, there’s no body of comparative studies on the impact of various chemo regimes on our particular little serial killer, so we opted for the one picked by all but one of the Kaiser oncologists who met to discuss our case [the dissenter argued for no treatment, and because of the lack of documentation].

An optional treatment discussed but not selected was a chemo regime that would’ve left us feeling miserable after every session, as opposed to the regime we agreed on, which confines the real misery to the wake of the first of three weekly IV sessions, followed by a one-week break, with the whole cycle repeated four times.

Today [Tuesday] was the five-hour epic initial session, and featured a whole pharmacopeia: Oral doses of a pair of anti-nausea drugs dexamethasone [a steroid] and ondansetron [anti-nausea], plus IV doses of fosaprepitant [anti-barfing] and the two heavy-hitting chemo drugs, gemcitabine and cisplatin. Preceding the chemo IV bags [the CISplatin comes in a full liter bag] were other saline-only bags to keep the system hydrated during the chemical assault.

In our initial experience of the Dread Double Whammy, the real misery didn’t come Wednesday [when we took two steroid and two ondansetron tablets] but on Thursday and Friday, when we doubled up — as prescribed — on the steroids.

There was one problem.

We were listening but not hearing during a pre-therapy class a nurse told us we should routinely take milk of magnesia after IV sessions because chemo constipates [and, we later learned, ondansetron is a another culprit]. We neglected her advice, and nine days of misery followed [including our second dose of chemo, the first of two two-hour gembatacine-only sessions], and ended only thanks to a cork-popping trip to the emergency room.

With all those ominous Round One misery memories looming, we were deeply grateful that a dear friend drove us to the Double Whammy opening Round two, stayed with us for the whole five hours, then drove us home — just as another friend had sat with us during our first session.

Perhaps surprisingly, the long sessions yielded rich conversations, punctuated by smiles, chuckles, and the occasional laughter. They were life-enhancing, affirming what’s best in our often-miserable species.

We can’t begin to express how deeply we’ve been touched by the expressions of friendship and compassion we’ve received since our diagnosis first came down. Our two daughters, their mother and her spouse, and our son all helped prepare our apartment whilst we lay in a hospital or nursing home bed, and dear friends we’ve met during our years in Berkeley [ten as of this coming July] have kept our spirits up by their companionship, calls, and emails. Then there are the old friends who stay in touch, and our Parisian muse, Moussequetaire.

We’re simply awed that we’ve blessed with riches we never even knew we possessed.

So as we write, we ponder the days ahead. We know, from last week’s visit to our oncologist, that it’s likely that we won’t get our usual energy back until July, the third month after the end of the fourth and final cycle.

But, he says, we’re doing better than most folks, so maybe June?

Who knows, right?

All we can say for sure right now is that we’re deeply grateful.

Chemo Chronicles: Status, and another drug

We made a trip to see our oncologist this week, and the word back is good.

Indeed, we’re told, we’re handling the chemotherapy better than the average patient. And while we received only half the scheduled dose at last week’s single-dose session because of some worrisome blood test results, that’s par for the course in this new and relatively experimental form of treatment.

Oh, and the hair is starting to go, as we discovered during a Monday brushing after noticing some silver threads amongst the white cotton of our pillow case.

All of which means that we’re on for our second of four dreaded double-whammy sessions Tuesday, hopefully without the more painful consequences of the first go-round. We get a total of twelve chemo sessions spread out over four months, of which four are the five-hour double-whammy mix of a gemcitabine hydrochloride and cisplatin. The next two sessions consist only of gemcitabine. Then comes a one week break, and the cycle begins anew for a total of four times.

Meanwhile, we indulge very modestly in the medical cannabis we’re allowed. Following Tuesday’s cookie, tincture, and smoke experience, we confined ourselves only to the nocturnal tincture Wednesday, perhaps helping us get a good night’s sleep.

Another banned drug treatment shows promise

This time, it’s another banned drug from the Sixties, psilocybin, and it’s being used not to treat terminal cancer itself but to alleviate patient anxiety.

Here’s one woman’s experience, via the New York University Psilocybin Cancer Anxiety Study:

From New York University vias Newswise:

Improvements in the diagnosis and treatment of cancers in recent years have led to a marked increase in patients’ physical survival rates. While doctors can treat the physical disease, what is not well understood is how best to address the psychological needs of patients with cancer.

In addition to the physical pain associated with cancer, many patients also experience psychologically harmful symptoms of anxiety, depression, anger, and denial. Social isolation, in addition to hopelessness, helplessness and loss of independence, has also been associated with significant psychological suffering in patients coping with advanced-stage cancer.

A recently published book chapter “Use of the Classic Hallucinogen Psilocybin for Treatment of Existential Distress Associated with Cancer,” reviews the potential of a novel psychoactive drug, psilocybin, in alleviating the psychological and spiritual distress that often accompanies a life-threatening cancer diagnosis.

The chapter, published in Psychological Aspects of Cancer: A Guide to Emotional and Psychological Consequences of Cancer, Their Causes, and Their Management, was co-written by Anthony P. Bossis, PhD, Clinical Assistant Professor of Psychiatry and Oral and Maxillofacial Pathology, Radiology, and Medicine at the New York University College of Dentistry (NYUCD) and Langone Medical Center.

The hallucinogen treatment model with psilocybin has been shown to induce a mystical or spiritual experience and is a unique therapeutic approach to reduce the anxiety of terminal cancer patients.

“Mystical or peak consciousness states in cancer patients have been Continue reading

Chemo Chronicles: From fug to fugue

Despite the nausea, constipation, and other sundry physical effects of the cancer chemotherapy we’re undergoing, we’d have to say the worst impact has been the creeping mental miasma.

Regular esnl readers have no doubt detected the results in the decline of frequency and depth of our posts, initially the result of the simple shock that comes from learning your body has turned on itself, followed by the physical shock of two surgeries.

Besides the loss of a cancerous bladder and prostate, we also find ourselves with a new means of draining our kidneys, thanks to the removal of a section of intestine and its reshaping into a conduct to carry urine from our surgically truncated uterers into a puckering pink urine-dripping extrusion [stoma] to the right of our navel.

There was pain after both surgeries [the first via catheter, the second by a large incision now commemorated in in a scar running betwixt navel to pubis, we stopped taking painkillers two days after leaving the hospital, leaving us an unwanted surplus of Percocets.

While the process of getting used to wearing what’s colorfully called an “urostomy bag” proved something of a trial, we managed to adapt to the stoma-drip-catching self-adhesive bags with the minimum of extra trips to the laundry.

But the biopsy showed the cancer, a rather rare micropapillary breed, had spread to at least one lymph node, and hence the four-month chemo regime, starting with our first double hit 8 January.

Of our three monthly sessions, the first is the real shit-kicker, a double dose of chemical cocktails administered over five hours. The nausea began on the second day, and lingered two more days, kept in relative check by another two-part chemical cocktail. Nine days of constipation began on the second day after the session, adding a whole new level of discomfort and ended only by a trip to the emergency room.

What still lingered was a peculiar sort of mental lethargy, a lingering mentational malady which allowed us to read a dozen hours a day but without the fuel to synthesize my responses into writing. Hence the decline in frequency of posting.

Our progeny and several friends had been urging us to get a medical marijuana letter, so we finally did, overcoming our natural inclination to add our name to yet another list.

So we became a member of a local medical marijuana club, and have now procured our first-ever California-legal weed. The only previous legal drugs we’d experienced had been our first dose of LSD in 1966, swallowed the night before it became illegal in Nevada, and hashish we bought at an Amsterdam coffee house in 2006 on the same trip where we bought a batch of just-plucked Psilocybin mushrooms procured from one of those now-closed Smart Shops legally offering both ’shrooms and live peyote cacti.

We mention this because we’re no strangers to cannabis, and we’ve done more than our share [1966-72] of psychedelics, with 2006 being our last experience of the latter.

We learned a lot about mind-altering drugs during our three-year service as scribe and block print carver for a Tantric Hindu artist and non-guru guru. The Tantrics and Shavites have developed a Prime Directive of cannabis use which we still follow: Never consume or ingest cannabis within three hours of eating. The reason is simple: Cannabis pulls blood into the brain, and when you consume while you’re digesting you create a conflict, with blood craved by the brain diverted to the digestive system, and leading to lethargy and sleepiness.

29 January 2013, Panasonic DMZ-ZS19, ISO 400, 12.5 mm, 1/50 sec, f5

29 January 2013, Panasonic DMZ-ZS19, ISO 400, 12.5 mm, 1/50 sec, f5

With a chemo-sensitized gut, we followed the rules today, and the result has been a distinct lifting of the mental lethargy, using the fruits of our visit to the Berkeley club a block from Casa esnl: A free Rhino Pellet [a cinnamon cookie made with cannabis-infused butter], an oral nocturnal cannabis and essential oil tincture [left], and a pinch of hash to brighten up our minor remnant of some seven-year-old Humboldt homegrown.

Our stomach is calm, our energy and mood increased to the point we tackled some serious house cleaning/organizing, and we’ve also done more posts than usual.

Intimations of other benefits

We also bear in mind that a growing body of research indicates that a non-psychoactive component of cannabis inhibits growth in cancer cells.

As San Francisco Chronicle reporter Victoria Colliver wrote last 18 September:

A growing body of early research shows a compound found in marijuana – one that does not produce the plant’s psychotropic high – seems to have the ability to “turn off” the activity of a gene responsible for metastasis in breast and other types of cancers.

Two scientists at San Francisco’s California Pacific Medical Center Research Institute first released data five years ago that showed how this compound – called cannabidiol – reduced the aggressiveness of human breast cancer cells in the lab.


“The preclinical trial data is very strong, and there’s no toxicity. There’s really a lot of research to move ahead with and to get people excited,” said Sean McAllister, who along with scientist Pierre Desprez, has been studying the active molecules in marijuana – called cannabinoids – as potent inhibitors of metastatic disease for the past decade.

Red the rest.

The National Cancer Institute website is less adulatory on its Cannabis and Cannabinoids web page, noting only this:

No clinical trials of Cannabis as a treatment for cancer in humans were identified in a PubMed search; however, a single small study of intratumoral injection of delta-9-THC in patients with recurrent glioblastoma multiforme reported potential antitumoral activity.

Donald Abrams, chief of oncology at UCSF physician said this to NBC News:

“If this plant were discovered in the Amazon today, scientists would be falling all over each other to be the first to bring it to market.”

And consider this, from the Science Updates blog of Cancer Research UK:

Through many detailed experiments, handily summarised in this recent article in the journal Nature Reviews Cancer, scientists have discovered that various cannabinoids (both natural and synthetic) have a wide range of effects in the lab, including:

  • Triggering cell death, through a mechanism called apoptosis
  • Stopping cells from dividing
  • Preventing new blood vessels from growing into tumours
  • Reducing the chances of cancer cells spreading through the body, by stopping cells from moving or invading neighbouring tissue
  • Speeding up the cell’s internal ‘waste disposal machine’ – a process known as autophagy – which can lead to cell death

All these effects are thought to be caused by cannabinoids locking onto the CB1 and CB2 cannabinoid receptors. It also looks like cannabinoids can exert effects on cancer cells that don’t involve cannabinoid receptors, although it isn’t yet clear exactly what’s going on there.

Read the rest.

And go here [PDF] for a 2010 metareview of medical studies, including Multiple Sclerosis, chronic pain, glaucoma, HIV/AIDS, nausea, brain cancer, and more.

And another wrapup’s here.

The bottom line: Since we’re engaged in fighting cancer, we’ll take all the help we can get.

[Oh, and as for psilocybin, see here and here.]