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

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

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

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

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

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

Finally, a bit of street stratigraphy. . .

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

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

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

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

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

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.

>snip<

“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.]

Chemo Chronicles: The end of Round One

We started chemo three weeks ago because the nasty little cancer that cost us our bladder [and prostate] back in November has spread to the lymph system, colonizing one of the twenty nodes they took along with the rest of our innards.

Our surgeon and our oncologist both give us good odds with the chemo, with only a one in five chance of a malignant resurgence with the chemo, compared to even odds or worse without it.

The regime consists of three weekly sessions, followed by one week off. Then retreat three more times.

The first session is the killer, a mix of two drugs. There’s an initial dose of gemcitabine hydrochloride followed with hefty infusion of cisplatin. It’s the latter drug that carries the punch in the form of three days of a deep-seated nausea, requiring another one-two chemical treatment. [For more, see this earlier post.]

The next two sessions are gemcitabine hydrochloride-only, and the worst side effect seems to be the burning session in the vein near the injection site.

As noted in our last post, the cisplatin seems to have triggered a nine-day siege of constipation, ending with a trip to the emergency room.

Our final gemcitabine hydrochloride session Tuesday went by almost without a hitch, and we’re not feeling any nausea the day after, so we may be in for a realtively pleasant two-week break before the next double whammy.

When we say “almost,” we mean some worrisome results from our last blood and urine tests led the oncologist to halve the dose of chemo.

Our platelet count was less two-thirds of the therapeutic minimum [64 versus 100, with a normal range of 140-400], and our urine showed elevated numbers for hemoglobin, protein, urobilinogen, and leucocyte esterase. But it’s the platelet count they want to see up before another double whammy.

We’re just glad we’ve got a two-week break.

Stay tuned.

Chemo Chronicles: Misery loves not company

Forget that old cliche. Misery doesn’t love company. Misery prefers to pull the covers over its head and lay, trembling, in the dark.

The last couple of weeks have taught us that.

Funny how failing to register a few words can lead to undreamt-of consequences. But that’s what happened.

During a pre-chemo class at Kaiser, the nurse-instructor mentioned that one of the potential consequences of throwing toxic chemicals at cancer inside your body is constipation. Therefore, she said, we needed to take a nightly sip of laxative.

Well, guess whose ears failed to make proper registration?

You can guess what happened [or didn’t, really] between 10 January —the second day after our first chemo session [the hefty one/two cisplatin/gemcitabine hydrochloride regimen that constitutes four of our twelve scheduled sessions] — and Friday night [19 January] in the Kaiser Oakland emergency room.

We called the medical advice line over the weekend of the 12th/13th after the constipation became painful and disabling, to be told to take an over-the-counter laxative brand, suppository to start, pills after. No results. And during our second chemo session [gemcitabine hydrochloride only] on the 15th, we told an oncologist that we were in considerable pain [also evident by grimaces and groans], only to be told to take another OTC laxative at night. No luck.

We spent a total of nine days abed because the pain of sitting was too intense and walking any distance was simply impossible.

The crisis came Friday, when we called our regular internist’s office, and were told to go to the ER post haste.

We did.

Friday night, in a five-hour ER session, the cork came out of the bottle. The contents have been coming ever since.

Tuesday’s our third chemo session [gemcitabine hydrochloride only], followed by one week off, then the whole cycle starts again with the double whammy and two more gemcitabine hydrochloride only sessions. There are four cycles altogether.

One thing we’ve learned to date is that chemotherapy is a case where you want as many people involved as possible.

The problem is, that’s not what you feel like doing when your thinking is clouded by constant pain and the kind of mental fugue that accompanies severe constipation.

Fortunately, some friends are organizing a telephone brigade to make sure I get a daily morning check-in call, which should help provide the kind of spur to action that was missing in our recent ordeal.

My internist [GP in Boomer-speak] is a key player I’m glad to see involved. He ordered a blood test that show some alarming numbers that weren’t revealed in any of the tests ordered by the oncologist, who is focused on electrolytes.

The numbers pertain to kidney function, and they don’t look good.

Stay tuned.

Meanwhile, to get an idea of just how potent these chemicals are, tale a look at this link sent me my reader Luce Kanon.

The Chemo Chronicles: Nausea and all that

Preface: What follows is a rambling post, composed over three days for reasons that will soon become apparent.

There’s a certain irony in the course of events since I discovered blood in my urine last September: None of the pain and other sundry inconveniences since the diagnosis were produced by the cancer itself.

The blood in the urine brought no physical discomfort, only anxiety. The diagnosis followed catheter surgery, which is no picnic once the anesthesia wears off, and you’re uncomfortably reminded of it every time you pee.

The hope was that the cancer was contained. If so, no radical surgery, just further catheter exams every few months for a couple of years.

But the initial surgery merely delivered the bad news: The cancer was big and and the bladder had to go, and with it, the prostate [which turned out to have a bit of cancer of another sort, as the post-op biopsy revealed].

The good news: No more painful pees.

The bad news: No more pees. And until you can’t pee any more, you have no idea how much the satisfaction the simple eliminatory act brings.

After the radical surgery in late November, recovery was painful, but we were off the percocet two days after we left the hospital.

Adjusting to a urostemy proved a challenge, a section of intestine snipped out and used to drain urine from the ureters, which empty into the snipped-out gut, which then opens onto the belly to the right of the navel through a bright pink stoma, the small segment of intestine through which the urine drains out into a self-adhesive plastic bag.

Adapting to the bag made for a few uncomfortably wet nights until we mastered the art of affixing the bag [which includes keeping a square of belly shaved].

But that took only a couple of weeks.

Chemo, however, is something else.

During our first session Tuesday, we experienced some discomfort in the form of a slight burning sensation in the veins of our left arm, where the needle bled a flood of chemistry into our bodies to target fast-growing cells, of which the potential cancer tissue is only one form [skin and intestinal cells, the tissue of the mouth, and, of course, hair, to name a few].

By evening, we were tired and slightly groggy.

Wednesday morning, well before dawn, came shivers and hiccups, accompanied by a sense that our stomach might just toss up anything we threw down it.

We took our anti-nausea chemical cocktail mix of ondansetron and dexamethasone [AKA decadron, a steroid] and went back to sleep. By late afternoon, we felt well enough to grab a glass of porter and a pizza with friends.

We went to bed early, then woke up very early Wednesday, feeling like we’d been worked over by Mike Tyson the night before.

There’s nausea, and then there’s nausea. The kind that was grabbing at every shred of our predawn awareness was like none we’d ever felt before. It wasn’t the drank-too-much-the-night-before sort, the kind that leaves you feeling when you first stand up that you’re walking on the deck of a storm-tossed ship.

No, this was something else entirely, a feeling that our viscera had sustained repeated powerful blows. No dizziness, no immediate sense of the need to vomit. Just plain old misery.

We downed the pills, the first of two days of double doses prescribed on the days after we were infused with cisplatin, the more noxious of our two chemo compounds [more on the regimen here].

We read abed for two or three hours [John D. Macdonald, Carl Hiassen, and Raymond Chandler have been trusty companions during our little adventure with the Big C], then grabbed some more sleep.

We did manage to do a little blogging Thursday, but none Friday, which was about as bad viscerally. We spent most of the day in bed, relieved by a Transatlantic phone call and a visit from a friend, who brought much-needed groceries.

We were up early again today, and looked over the first part of this post, which had been banged out in dribs and drabs over the past two days and decided — what the hell — we’ll go with it.

One thing I’ve learned for certain: Cisplatin will never catch on as a drug of abuse.

First chemo, the nauseous day after

While we left Tuesday’s double whammy chemo session feeling merely a bit weak, it’s the second day that we’re starting to feel the effects from pumping hefty doses of a pair of toxic chemicals through our veins.

We feel, to quote an old cowboy friend from long ago, that we’ve “been rid hard and put away wet.”

It began with shivvers when we woke up at four, and they passed after we read for an hour or so. Then, when we awakened again three hours later, hiccups came as we lay abed contemplating the day. A half hour later came the nausea, mild but disorienting.

We’ve just popped the requisite pills, ondansetron [a seortonin antagonist] to combat the nausea and dexamethasone [AKA decadron, a steroid] to augment the anti-nausea effects of ondansetron and stimulate appetite. Oddly, one of dexamethasone’s side effects when not used in this combination is nausea.

We double up on the steroid tomorrow and Wednesday, then discontinue until four weeks from now when we have our second double whammy treatment. The drug isn’t used in connection with our next two weekly sessions, which consist only of gemcitabine hydrochloride.

We get a one week break, then start again with the same cycle, which we’ll undergo a total of four times.

The whole cancer experience, which began the September morning we saw blood in our urine and continued through two surgeries, a nightmare stay in a nursing home, and then the latest chemical adventure, has been truly humbling for one main reason: We have discovered that we are rich in the only thing in life that really matters friends.

I won’t name them without asking their permission, but I have been especially touched and deeply humbled by the constant support of my friends here in Berkeley. I was visited daily in the hospital after my surgery as well as in the nursing home by people I’d grown to respect during my days working at the Berkeley Daily Planet. A former newspaper colleague has been my chauffeur to surgeries and my chemo session.

Then there are my distant friends, including many colleagues from newspapers where I’ve worked, some still extant. And there is the old and fondly remembered lover. And, always, Moussequetaire in Paris, with calls and messages.

Family too has been a source of great solace. My ex and our two daughters came to Berkeley to clean house while I was in surgery, and I returned to a home spotless and furnished with both a new bed and a new sofa.

And then there are you, the readers, with your own notes of encouragement and offers of help. I am simply awed.

Whatever the outcome of our current ordeal, our life is much the richer for it, and for that we are deeply, deeply, grateful.