Category Archives: Cancer, our experience thereof

Chemotherapy drug leads to loss of hearing

We’ve never done things in half measures.

Just ask any of our three ex-wives.

So when it came to cancer, we didn’t have just one variety. No, we had two [previously].

In addition to the prostate adenoma that’s almost inevitable for the aging male, I also had a much more pernicious Stage IV “high grade metastatic micropapillary urothelial carcinoma” of the bladder, which had pierced through the muscle begun infiltrating into the lymphatic system, the fast track to metastasis in other organs.

The prognosis wasn’t good. Even with surgery and chemo, sources we consulted at the time listed survival odds after five years at about one in five, although numbers I found today raised that overall number to 58 percent.

After I lost our bladder and prostate to the surgeon’s knife on the morning of 20 November 2012, then started a four-month-long regime of chemotherapy on 8 January 2013.

Chemo was, in short, miserable. There was the nausea, and to counter it, drugs that caused constipation so bad that two emergency room trip were required. We were spared further visits after our oncologist, since retired, provided authorization for medical marijuana.

But after all the initial agony, we discovered problems we hadn’t be warned about beforehand, resulting from the damage done to our nervous system by the same poisons that had killed off the cancer cells.

One form of damage was well known, neuropathy.

We discovered it when our feet would never fully “wake up,” but instead remained constantly atingle.

That might sound like a minor problem, but consider that constant and delicate feedback from the nerves in your feet is what, along with signals from your inner ear, allows you to keep balance when standing, walking, climbing. . .you get the idea.

And speaking of ears.

What we also discovered was that we’d lost about a third of our hearing, a loss compounded by sometimes shrieking levels of tinnitus, otherwise known as ringing in the ears.

When we mentioned it to our oncologist we got a dismissive response, and a suggestion that it was simply a product of being tired.

Three years later it’s no better.

We can’t watch television or DVDs without subtitles, and conversations are often intolerable because we miss half or more of the words unless the speaker is possessed of a speaking range that fits within the narrow range of frequencies to survive the damage.

But the hardest part was the dismissive attitude of our physicians.

Confirmation comes at least [What was that you said?]

Well, now we have hard evidence, involving cisplatin, the most painful of the drugs in our chemo regimen.

And whilst the patients involved in the study were treated for a different breed of answer than those afflicting us, the key result unquestionably applies.

From the University of Indiana:

Many testicular cancer survivors experience hearing loss after cisplatin-based chemotherapy, according to researchers at Indiana University.

The researchers, led by Lois B. Travis, M.D., Sc.D., the Lawrence H. Einhorn Professor of Cancer Research at the IU School of Medicine and a researcher at the Indiana University Melvin and Bren  Simon Cancer Center, studied for the first time the cumulative effects of cisplatin-based chemotherapy on hearing levels in testicular cancer survivors through comprehensive audiometry measurements. They found that increasing doses of cisplatin were associated with increased hearing loss at most of the tested frequencies, involving 4, 6, 8, 10, and 12 kHz.

The research was published online June 27 in the Journal of Clinical Oncology.

“In addition to hearing loss, about 40 percent of patients also experienced tinnitus (ringing-in-the-ears), which was significantly correlated with reduced hearing,” Dr. Travis, also director of the cancer center’s Survivorship Research Program, said.

Although this study was conducted in patients with testicular cancer, the authors point out that the general conclusions are likely applicable to patients with other types of adult-onset cancers that are commonly treated with cisplatin. They indicate that it will be important to follow patients given cisplatin-based chemotherapy long-term to better understand the extent to which the natural aging process may further add to hearing deficits, as it does in the general population.

“The results show the importance of comprehensive hearing assessments, preferably, both before and after treatments,” Dr. Travis said. “Our findings suggest that health care providers should, at a minimum, annually query patients who have received cisplatin-based chemotherapy about their hearing status, consulting with audiologists as indicated. Patients should also be urged to avoid noise exposure, drugs having adverse effects on hearing, and other factors that may further damage hearing.”

There’s more, after the jump. . . Continue reading

Study proves arthritis a major factor in suicides

What’s the number one risk for suicide for adult males?

Childhood sexual abuse?

Domestic violence?

Drug or alcohol addiction?


Anxiety disorders?


There’s one condition that poses a greater risk than all those human tragedies, a risk greater even than that posed by a current chronic pain condition.

And that risk is one with which we’re on intimate terms: Arthritis, a condition which has afflicted us for four decades.

From the University of Toronto via EurekaAlert:

One in every 26 men with arthritis have attempted suicide compared to one in 50 men without arthritis. Women with arthritis also had a higher prevalence of lifetime suicide attempts than women without arthritis (5.3% vs 3.2%), according to a recent study from the University of Toronto.

The study found that those with arthritis still had 46% higher odds of suicide attempts than those without arthritis even when adjustments were made for important factors such as age, income, chronic pain, and a history of mental health disorders.

“When we focused on adults with arthritis, we found that those who had experienced chronic parental domestic violence or sexual abuse during their childhood, had more than three times the odds of suicide attempts compared to adults with arthritis who had not experienced these childhood adversities. The magnitude of these associations with suicide attempts was comparable to that associated with depression, the most well-known risk factor for suicide attempts,” said lead author Esme Fuller-Thomson, Sandra Rotman Endowed Chair at University of Toronto’s Factor-Inwentash Faculty of Social Work & Institute for Life Course & Aging.

“Other factors associated with suicide attempts among those with arthritis include a history of drug or alcohol dependence and/or anxiety disorders,” reported co-author Natasha Ramzan, a recent MSW graduate of the University of Toronto. “In addition, those with arthritis who were younger, poorer and less educated also had higher odds of suicide attempts.”

The paper was published online this week in the journal Rheumatology International [$39.95 to read just the one artcile, thanks to those philanthropic folks at Springer — esnl]. Investigators examined factors associated with ever having attempted suicide in a nationally representative sample of 4,885 Canadians with arthritis and 16,859 adults without arthritis. The data was drawn from the 2012 Canadian Community Health Survey-Mental Health.

Co-author and doctoral student, Stephanie Baird, cautions that “due to the cross-sectional nature of this survey we cannot establish causality. We do not know when the arthritis began nor when the suicide attempts occurred. It is possible that other factors that were not available in the survey may confound the relationship. For example, childhood poverty, has been strongly linked to both the development of arthritis and suicide risk.”

Researcher’s note that the findings need to be confirmed by others using prospective data before any public health recommendations can be made. However, if confirmed, they may have significant clinical implications for professionals working with those with arthritis, particularly with patients who have experienced childhood adversities, and a history of mental illness and substance abuse.

Our our arthritic condition is the rheumatoid variety [RA in medical shorthand], an autoimmune addiction rather than osteoarthritis, kind of inflammation causes by the the wear-and-tear of life.

Since we can’t access the study, we don’t know whether the authors differentiated between the varieties of arthritis, with RA requiring, in addition to anti-inflammatories and painkillers powerful, immunosuppressant medications — including some used in cancer chemotherapy and known to adversely affect cognitive functions [previously].

Chemo brain: Another drug is implicated

Chemo brain. . .two little words for something so profound.

But before we get to the latest medical finding about chemo’s cerebral ravages, some personal context.

Going through chemotherapy following surgery for an aggressive bladder cancer [plus more malignancy in the ol’ prostate] was a frightening experience on a body now equipped with bag on the belly to catch the urine from a section clipped from the small intestine voiding through an abdominal opening.

You lay therein a reclining chair, sometimes for the better part of a morning or afternoon, as a toxic chemical stew trickled into a burning vein.

The same chemicals toxic to the cancer also proved toxic to nerve cells, both in feet benumbed and tingling from neuropathy and in ears increasingly deafened and simultaneously clangorous with tinnitus.

But chemo also damages the hipocampus, part of the brain critical in memory formation [among other things], leading to the taxing effort needed to impress and recall events of daily life. . .in other words, chemo brain.

For fifteen years before the cancer diagnosis, surgery, and chemo, we had taken a mild weekly dose of another cancer chemo drug to keep in check a disease that tuned our immune system into an inflammatory machine consuming the cartilage between the joints of hands, wrists, and elbows.

Methotrexate was the major component of a five-drug cocktail drug we consumed, losing it from the mix a few years ago.

When it came time for the post-surgery chemo regime, the cancer panel at Kaiser considered the biopsy and our general medical profile and settled on two possible chemo regimes. Because the principal drug in one of the alternatives was methotrexate, I figured that since the cancer developed when methotrexate was present, the drug might conceivably have led to selection of cell lines more resistant to the drug. Our oncologist allowed as he could say for certain that I was wrong.

And that brings us to a new chemo brain finding, one in which methotrexate is both a blessing and a culprit.

From St. Jude Children’s Research Hospital:

Research from St. Jude Children’s Research Hospital suggests that pediatric leukemia patients exposed to higher concentrations of the chemotherapy drug methotrexate are more likely to struggle with mental flexibility, organization and related skills as long-term survivors. The findings appear online in an early release article in the Journal of Clinical Oncology [subscription required].

Investigators also reported that brain imaging showed that higher blood levels of methotrexate during treatment for acute lymphoblastic leukemia (ALL) were associated with anatomical and functional changes in regions of the brain involved with mental flexibility, planning, reasoning and other skills related to executive functioning. Brain imaging documented several changes, including increased activity in the frontal lobe region. The finding suggests survivors’ brains may be working harder to compensate for impaired cognitive functioning.

“With five-year survival rates for pediatric ALL approaching 95 percent, researchers are focused on better understanding and reducing the neurotoxicity patients still experience during and sometimes long after treatment,” said first and corresponding author Kevin Krull, Ph.D., a member of the St. Jude Department of Epidemiology and Cancer Control. “It remains a relatively common problem even in the contemporary treatment era of chemotherapy only.

“This study is the first to show a clear dose-response effect between methotrexate concentrations in the blood during treatment and executive functioning in survivors. This information is essential for designing effective intervention to address the risk,” he said.

There’s more, after the jump. . . Continue reading

When captions go bad: Television’s sad reality

As we’ve noted before, one of the consequences of the chemotherapy that followed the removal of a malignant bladder and prostate was damage to the nervous system, one of those things not sufficiently emphasized before the chemo.

We can understand why: Oncologists and surgeons are eager to save their patients, and an emphasis on the negative impacts of chemo might deter some patients from undertaking therapies that, all things  considered, still allow their patients to experience long and fruitful post-therapy lives.

That said, one of the most vexing outcomes of our own treatment was a significant loss of hearing.

Some loss of hearing is inevitable by the time you reach the latter half of your seventh decade, even more so when you’ve done a fair amount of target shooting in your youth, listened to a lot of loud Rock and Classical music, indulged in a couple of decades of cigarette smoking, and swallowed a variety of anti-inflammatory drugs to treat chronic rheumatoid arthritis.

But before the chemo, all we needed to make out the dialog of network television and DVDs was a slight increase in volume.

But the chemo changed all that.

Elder daughter said “Well, dad, just turn on the captions.”

And so we did.

And then we discovered something remarkable.

While DVD captions were generally accurate and clearly displayed, for both television programs and films on cable and broadcast television, captions were generally incomplete, often misspelled, and frequently inaccurate.

All too often, the result is large gaps in dialogue, often rendering scenes all but incomprehensible.

We have to wonder why.

Given that scripted shows are, by definition, scripted, why don’t networks simply use the scripts, which are always produced by computers these days, to simply feed in the dialogue, rather than use real-time transcription services?

Given that using scripts would not only require less labor and provide much greater accuracy for hearing-impaired viewers, we think that’s a damn good question.

On recovering from cancer chemotherapy

Consider the following as a partial explanation for our long blogging silence. . .

Chemotherapy, I have learned, ain’t no picnic

Films, television dramas, and news features frequently deal with the sometimes-nasty immediate impact of poisoning the body in hopes that the toxins will be taken up by cancer cells, which typically multiply faster than the healthy cells of their host organs.

And, by and large, chemo has done a notable job of boosting the life expectancies of those afflicted with one of the host of ailments going by the common name of cancer.

We didn’t have just one form of cancer. No, we had two.

In addition to the prostate adenoma that’s almost inevitable for the aging male, I also had a much more pernicious Stage IV “high grade metastatic micropapillary urothelial carcinoma” of the bladder, which had pierced through the muscle begun infiltrating into the lymphatic system, the fast track to metastasis in other organs.

The prognosis wasn’t good. Even with surgery and chemo, sources we consulted at the time listed survival odds after five years at about one in five, although numbers I found today raised that overall number to 58 percent.

After I lost our bladder and prostate to the surgeon’s knife on the morning of 20 November 2012, then started a four-month-long regime of chemotherapy on 8 January.

Chemo was, in short, miserable. There was the nausea, and to counter it, drugs that caused constipation so bad that two emergency room trip were required. We were spared further visits after our oncologist, since retired, provided authorization for medical marijuana.

I lost about half my hair, and what was left turned white. We were pleasantly surprised when most of it grew back, with no more gray in it than before the chemo.

But there were other consequences, some more serious.

First, I lost a lot of feeling in my feet, a consequence of the neuropathy that comes when toxic chemicals used in chemo attack healthy tissue [nerves]. While daily doses of gabapentin have helped, we have to deal with a constant tingling sensation in the feet, as though they had “gone asleep” and were tingling as they slowly came awake. Without full sensation in the soles of the feet, balance is impaired.

Second, I lost about half our hearing range, and am now forced to rely on subtitles in the TV and DVDs we watch. Hearing aids are so expensive as to be out of the question. As a result, I haven’t been in a movie theater or a public in three years or so. A few folks speak within the range of frequencies remaining, but not many, so I am forced either to ask people to talk louder and repeat themselves, or simply hear nothing at all.

So scratch any possible jobs involving breaking news stories and public meetings
But what’s far worse is “chemo brain,” problems with another set of nerves, those in the brain so crucial to memory, both its formation and in its role in recalling past events [autobiographical as opposed to procedural memory]. Once dismissed as folk mythology, studies have proven that a significant number of chemotherapy patients sustain long-term damage to memory formation and recall, as well as a significant rise in lingering depression [though, let’s face it, getting cancer is depressing].

One could argue that memory loss is to be expected in a 69-year-old male, but the nature of the loss and the accompanying ennui and depression leave me convinced that chemo is the primary culprit.

One drug that does show promise for a post-chemo brain rewiring, but it’s currently illegal. The chemical in question is psilocybin, the primary active ingredient in shrooms, or magic mushrooms.

A study published by Britain’s Royal Society has show psilocybin to increase the density and range of inter-brain connections to an unprecedented degree. Sadly, we’ve no access to the compound, which the federal government classifies as more dangerous that crystal meth and on a par with heroin.

From the study, this graphic indicates the astounding power of the drug to create and strengthen connections, with connections in untreated brains shown on the left and post-psilocybin connections shown on the right:

BLOG Shroombrain

And now for something completely different

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

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

From the New Yorker:

Magic Mushrooms and the Healing Trip

Program notes:

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

Chart of the day: Cancer, plus added musings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wow, where to begin?

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

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

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

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

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

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

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

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

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

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

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

And now, that chart, which accompanied the article:

BLOG Cancer

Celebrity doc does cannabis turnaround

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

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

From CNN:

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.