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Note: This was written a year ago. The throat and prostate cancers are currently in remission and I have had time to enjoy the new stents in my right coronary artery. In the last few years I’ve been sonicated, dissected, radiated, biopsied, chemically castrated, spiked with positron emitters, poisoned with platinum, and stented. Yes boys and girls, what a delightful time it has been.
It doesn’t take long in one’s treatment regimen to see that a large industry consisting of diverse technologies has grown around cancer. As one is lead through the maze of corridors and treatment plans, it becomes apparent that the treatment centers are backed by some serious industrial might. As I walk into the cancer center my blood pressure is taken by an automated device, a digital scale takes my weight, and a small device with a light source in it takes my blood oxygen. The staff unlocks the terminal with a fingerprint reader and enters the data into my patient file. The doctor and a dapper young resident soon arrive and consult the terminal. Blood tests are short turnaround and performed on site. The onco-doc and the resident look at the results and divine some kind of conclusion from the numbers.
In nuclear medicine, a local 18F provider produces F18-labeled drugs for daily delivery to the rad labs in small leaden containers. Shortly before delivery a radiochemist quickly isolates the 18F (KF?) and prepares the 18F-glucose that the patient will receive as an injectable from a shielded syringe.
After a bit of resting time to allow the radio-sugar to circulate, the radioactive patient is placed on a motor-driven table that slides into an integrated CT-PET scanner for a bit of tomographic wizardry. A 3D x-ray map of the body is reconstructed from the CT beam data. As soon as the x-ray data is captured, the adjoining PET scanner is switched on and the patient is moved into the sensing zone of the device where gamma rays emissions reveal their location in three dimensions. After the data is collected, it is superimposed on the X-ray CT image to show anatomical locations that indicate an excess accumulation of the glucose. Cancer cells, being immortal and capable of mobility, can reproduce at a higher rate that normal cells. This leads to increased glucose uptake and, accordingly, a greater concentration of radiolabeled deoxyglucose in the cancer cells. A greater concentration of 18F-labeled glucose betrays the location of concentrated cells as they light up in the gamma spectrum.
The pharmaceuticals for chemotherapy are often quite toxic so the nurse who administers the drug is required to don PPE for preparation and administration of the dose. Specialized furniture is provided for the comfort of the patient and family. In the infusion suite of UC Hospital patients lie on recliners within a walled space with a view of the outdoors. Many patients watch familiar television programs as poison drips slowly into their veins. Some patients get sick relatively soon and succumb to fits of vomiting. Others are so strung out from the treatments that they lay there impassively. Worried family and friends strive to manage their own fears while trying to be attentive and positive.
Everywhere in the hospital disposable implements are used. The amount of sterile consumables used by a busy hospital is substantial. Sterile wrappers, clam shell packaging, syringes, IV bags, gauze, tubing, etc. I doubt that the shadows of medical and nursing students ever darken an autoclave anymore.
The breadth of technology and applied science in a hospital is staggering. Microprocessors monitor a wide variety of sensors that then produce digitalized output to either a dedicated screen display or to a nursing station.
The whole system at the hospital is devised to use every available minute of the physicians time. Receptionists verify the patient’s identity and assure the computer that the insurance information is in place. Patients are lined up for entry to the examination rooms.
At a university hospital, physician/professors on duty may have students and residents in tow to observe the great variety of disease states covering a wide range of illnesses. In a recent visit to my head and neck onco-doc, the three polite medical students took turns noodling the scope in my throat to get a thorough look-see. I had all I could do avoid laughing while the students took turns carefully manipulating the slender optical fiber device as it twisted about up through my nasal spaces and emerged below the uvula. The monitor displayed in sharp definition the glistening pinkish tissues in the treatment zone. As before treatment the primary tumor was not visible to the eye.
The industrial cancer business is vast, staffed by highly educated people, data driven and supported by a web of supply chain industries. The extent of the integration of data management is apparent as soon as you check in. Before the appointment is granted your identity and insurance status are verified by the accounting system and copayment is taken. An assistant guides you into a room where digital equipment takes your vital signs and the results are loaded into your patient record on the spot. You wander into another room and the nurse records the purpose of the visit and takes note of your vital signs and history. Soon the doc ambles in, logs into the data system and reviews the information. The appointment begins in earnest.
Those of us in our late 50’s have lived long enough to witness the gradual takeover of electronic and data technology in every aspect of our lives. In the early 1960’s, most of our lives were entirely analog. Television, radio, film, music, automobiles, and general business activities were largely conducted with technology that was fundamentally analog in nature. That is, energy was manipulated or work done via frequency or intensity modulation of electrical properties or by machinery powered by distant turbines. Devices driven by binary math and Boolean logic were around obviously but were only just beginning to enter the consciousness of common folk.
The point is that computer technology has, over a short interval, applied novel decision making or influences on the most intimate elements of our individual existence: The conduct of our wellbeing and how we process the never-ending stream of bewildering sensory input into our consciousness. Applied to the present discussion, health care providers and patients today face a torrent of data in the form of images and measurements that must be wrought into some kind of picture that people can comprehend and use to make plans. Inevitably there are data that, while accurate, are irrelevant to a given issue. And inevitably there are still questions that cannot be answered honestly owing to a fundamental lack of understanding.
For the patient there is a bewildering stream of science-based information and not so sciency information. There is a tendency in people to pay attention to optimistic product testimonials by other afflicted individuals. Magazines and cable television telegraph anecdotal sales pitches at people desperately seeking relief and even a cure. Many people feel the allure of anti-establishment messages promoting dietary plans. There is much talk of anti-oxidant, cleansing and herbal approaches to the treatment of disease states. The fact is, substances which might very well have cancer-preventative properties may be quite useless in the treatment of cancer.
In the past I have written posts on the adventure of having two stage 4 cancers and the journey down the rabbit hole one takes as treatment goes forward. Three years ago I had surgery, radiation and cis-platin for throat cancer. Three years later my throat or oropharyngeal cancer is undetectable. Of course, this is good news. What remains of the experience are the lasting effects of intense radiation exposure in and around the target volume. I developed the normal array of after effects: stunted salivary glands resulting in chronic dry-mouth; periodontal disease and the loss of a few teeth; a substantial loss and distortion of the sense of taste; inadequate thyroid function requiring medication; difficulty in swallowing dry foods; radiation scarring on the neck; and lymphedema where 33 lymph nodes were removed from my neck. I’ve adapted and manage quite nicely to plod down the timeline much as before.
My situation with the stage 4 prostate cancer (Gleason 8) is stable. One of the treatments for prostate cancer is chemical castration. Since testosterone has the effect of accelerating the growth and spread of prostate cancer cells, the commercial drug Lupron is used to down regulate the production of testosterone. Loss of body hair and muscle mass as well as the onset of hot flashes were some of the highlights of my experience. A substantial nulling out of the sex drive happens as well. Effectively I spent about two years as a eunuch.
It’s been nearly a year since the Lupron injections have stopped. I’m getting a more strength and some body hair is returning. I’ll leave it at that. The radiation treatment was intense in the target zone, but largely without significant discomfort overall. The tricky part of external radiation treatment of the prostate is it’s proximity to the bladder and the bowel. Fortunately, modern IMRT equipment is capable of modulating the x-ray beam intensity as well as shaping the beam with a multileaf tungsten collimator as it rotates around the patient.
After 11 months since the last Lupron shot, my PSA has increased only slightly from being non-detectable. The return of testosterone after having it shut down for 2 years is a weird experience for a fella. But weirdness is normal in the world of cancer treatment.
Now we’ll pivot to a different topic.
A delicate parting thought for friends and family of those with cancer. Invariably a well intentioned friend or family member will say that their thoughts and prayers are with you or that a prayer group is holding you in the light. Another expression of sympathy might be that there is a reason for everything and that God has a plan for all of us, and as the story goes, our lives have purpose after all. Such sincere well wishes are expressed with the best of intentions, but for myself and other non-theistic people it rings hollow and offers little consolation. A prolonged and agonizing illness is part of some plan? Seriously? If a person set forth such a plan we would rightly consider this foul individual a psychopath worthy of punishment.
People express these sentiments when presented with an existential conflict- it is when the need to connect their belief system with
reality the observable world is confronted with the paradox of the divine sanctioning of pain, suffering and untimely death. The need is met by the supposition that there must be divine purpose rather than the unthinkable alternative of the illness happening in the stark emptiness of a godless universe. If such a universe existed, what possible purpose could there be in existence? Well, yada yada. I’ll take this topic up in a later post.
Here is an alternative for your non-believing friends and family. Consider renewing and expressing gratitude for their love and friendship. Confess what the person means to you and commiserate with their condition. Let your emotions flow. Hold their hand. A bit of listening goes a long way too. Mirth is always welcome- the regaling of past exploits, funny stories or people, jokes or the sharing of what experiences you have in common. A light heart and cheerful smile is always welcome in sickness and in health.
Last week I finished 38 x-ray treatments on the Varian Linear Accelerator with IMRT for my prostate cancer. This device uses a variable leaf collimator for continuous dose adjustment as the beam rotates around the patient. Each treatment is preceded by a CT scan with a built in CT scanner mechanism on the accelerator. This is performed for purposes of alignment of the target area to the beam which rotates about a fixed axis, coincident with the center of the target.
Along with the 76 Gy of x-ray therapy is hormone ablation with Lupron. The standard treatment for advanced prostate cancer, Gleason 8 in my case, is hormone ablation and radiation therapy to the prostate.
Initially, the trick to impeding the growth of the cancer is to suppress testosterone which is needed for reproduction of the cancer cells. The pituitary controls the signaling for testosterone secretion from the testes. The adrenal glands secrete a small amount of testosterone as well. Lupron suppresses the signaling by the pituitary gland. This is effective for a period of time, perhaps as long as 24 to 36 months.
Eventually the cancer becomes resistant to this approach and enters the so-called refractory or castration resistant stage. In response to the lower testosterone titer in circulation the cancer cells produce more testosterone receptors, called AR for Androgen Receptor. The number of AR’s multiply by 3x to 5x, increasing the sensitivity of the cells to what little testosterone (or dihydrotestosterone) there may be in circulation.
Blocking the androgen receptors is an approach to treating castration resistant cancer, but it does have limitations. This will be explored in a later post.
An observation from a patient’s perspective. Insurance will generally not pay for off-label or experimental therapy. So unless the patient is self-insured, the treatment profile will follow the board approved protocols for a given diagnosis. This isn’t a bad thing, but often a medication or other treatment will show effectiveness in other applications. While the doc has some discretion here, the insurance company may not approve payment. And, they may decline to pay months down the timeline when their internal review staff have had a look at it. They make their profits by declining services, not offering to pay for it.
Initially I had hoped for the possibility of participation in a treatment study if this disease went south, as it is likely to do. What I was told is that because I have had 2 cancers, throat and prostate, I am almost certainly disqualified from participation. This was disappointing but I understand the reason for it. Even so, I am barred from a Hail Mary pass down the road.
So, what now? Well, it is watchful waiting. While PSA numbers are given less importance in checkups for ordinary patients owing to the history of overtreatment, for a post-treatment Gleason 8 patient like myself, the PSA number is a direct indicator of disease progression. Once the disease becomes castration resistant, I suppose that some kind of AR therapy is next. The docs have been evasive when asked. Apparently there are several paths available. But I suspect they would rather the patient focus on the present and not the damaged bridge miles ahead of the train. We’re all headed for that bridge, it’s just that some are further up the tracks.
Five months past treatment for throat cancer I will set aside The Squamous Chronicles and instead post The Adenocarcinoma Chronicles. Having won the advanced prostate cancer lottery as well, my current adventures involve treatment below the beltline. Here are my impressions of the experience to date.
Physicians, or more specifically in this context, oncologists, are ethically constrained to apply agreed upon treatments for the indications presented by the patient. I have gotten no “off-label” kind of advice up to now. In my case, my PSA was 39 and the biopsy readings from the pathologist were assigned Gleason 9. Well, sonofabitch. That was a fine kettle of fish. Looks like my watchful waiting was long in the waiting and too light in the watchfulness.
The standard treatment regimen in my case is hormone ablation and radiation. For hormone ablation I have had Degarelix and Lupron. For radiation I have begun IMRT (Intensity Modulated Radiation Therapy) with a dose of 76 Gy to the targeted tissue mass. I asked about scatter dose to the testes just because of the obvious proximity. The Rad Onc looked it up and said it was 1 Gy. I then pointed out that I’ve had a goodly bit of radiation in the last year and was there anyone who keeps a running total on the cumulative dose? As expected, the answer was “no” followed quickly by the standard rationale that the disease was far more dangerous than the radiation. I’d say the same thing I suppose.
Things that my docs are reluctant to offer are opinions on how this whole disease plays out. There seem to be several elements to this reticence. First, predicting the future is difficult, especially with a stochastic phenomenon like cancer radiotherapy. Second, there are good reasons for the doc to not focus on gloomy topics like life expectancy, especially if the survival stats are not the best. Most people at some point spontaneously think of cancer as a death sentence. At present I view it as a chronic condition that will play out stepwise in terms of a convergent treatment and remission series that eventually ends with refractory and widespread disease. Seems pretty obvious. It is the time-scale that I am uncertain of.
I am writing about this because my treatment regimen seems relatively ordinary to this point given the status of the condition. Perhaps there are some fellows who have yet to climb on this train who are uncertain of where it goes. This is my journey and I’ll pass along my notes.
Now 14 treatments into radiation. With the help of medical textbooks ordered from Amazon, I have slowly been learning more about the disease and the treatment. During my weekly consult with the Rad-Onc I asked the question- “What was the T number from the pathologists notes?” He replied it was T3c N1. The N1 means there is a node involved so it’s Stage 4 cancer. No one actually came out and said this to me so I had to ask. It is one thing to suspect it and another to hear it. Hard to say if this knowledge is in some way empowering.
If you knew me personally, you’d know that as a reductionist my profile can be reduced to that of a liberal atheist scientist with marginally good manners. I broke the shackles of magical thinking in high school after reading a few books by Bertrand Russell and Carl Sagan. Though I have not been the same since, I have come to sympathize a bit with Quakers and their predilection for peace.
My religious upbringing was quite ordinary for a young Iowegian lad in the 1960’s. Confirmation in the Lutheran Church (Missouri Synod) in 8th grade followed by a short stint as a reluctant acolyte. The church seemed firmly footed in bedrock as an institution and adept at indoctrinating the young. In catechism studies I tried to understand the authoritarian system that is outlined by Martin Luther and the strange collection of narratives that make up the King James Bible.
There were abstractions that didn’t make sense then and are still a mystery to me today. The concept of the Holy Trinity always seemed suspiciously anthropomorphic. Then there is the crucifixion as a kind of “ghostly sorting mechanism” for salvation. It stands out against the backdrop of natural phenomena like physics and biology- mechanistic systems which seem to suffice for everything else. Finally, there is God’s seemingly endless requirement for worship and admiration which has always struck me as a vanity unnecessary for a supreme being. The whole scheme reeks of iron-age anthropology.
I remember the day it happened. I was praying for something or other. Trying to have a little spiritual time with the Big Guy. It finally dawned on me that I was talking to myself and in doing so, wishing for some particular outcome to happen. All those years. Praying and wishing were indistinguishable. I’ll admit, I was never one to volunteer a lot of praise to God. Heaping praise on a deity seemed patronizing and wholly unnecessary. Surely if God could elicit wrath, then he’d certainly pick up on being flattered.
Well, in the end, so what? Another tedious atheist commits apostasy. Like most people in US culture, my moral basis was built on what has been described as Judeo-Christian morals or ethics. It’s hard to avoid. But just as the earth does not rest on a foundation, I am not limited to sensibilities derived only by the sons of Abraham in a far earlier age. My culture and my brain tell me that theft, murder, and the other spiritual crimes (sins) are bad for the common good. That respect for others has a pleasurable and sensible aspect that threats of eternal damnation do not improve on.
The reductionist in me can’t resist the following assertion. Deistic religion reduces to cosmology. In the end, a religion offers a theory of the universe. It is a kind of physics that defines relationships between the prime mover and his (?) bipedal subjects imbued with mystical sensitivities. It claims to define the outcome of the disposition of a soul, whatever that may be. I don’t even believe in the existence of the mind, much less a soul. As a form of physics, religion lacks means by which theories can be tested. Quantitation of a spiritual element is an idea that has yet to see practice. It seems to lack predictive capability to estimate an outcome that can be validated. It is definitely not a science. It is not about matter or energy. It is about how to conduct ones life against a backdrop of divine authority and within a box of behaviors.
But our brains seem to be constructed in a manner such that religious/spiritual notions are nearly irresistible. Billions of people have claimed to feel its draw and testify to its merits. The projection of anthropomorphic imagery in myth is common in diverse cultures. The Abrahamic religions congealed from cultures that were apparently unaware of the concept of zero. Where heaven is death with a plus sign, hell is death with a negative sign. To an atheist death is just zero. It has no sign or magnitude. It is unconsciousness and devoid of the awareness of pain or pleasure. Zero sensory processing. It is neither exaltation nor agony. Just zero. Entropy prevails. Such an outlook is hardly appealing enough to gather followers. It is grim and without hope of graduation to eternal bliss. The take home lesson is to live in the moment, not the future.
Who am I to argue with millennia of religious thought? I don’t know. All I can say is that even as a cancer patient, I remain refractory to the pull of religious and mystical thinking. So it was and so it is.
Divinity students! Relax. I’m no threat to your faith. My conclusions on this life of ours offers no ceremony and precious little fellowship. I can say that I’ve had an eye-full of the clockwork of this universe. Adherence to evangelical doctrines could not have provided the amazing insights. And for that I have no regrets.
Update: I sit and write at a desk piled with pdf printouts of patents, journal articles, a Phi-Tec 1 handbook, and a great heap of process safety data and reports. I help coworkers find and study patents for their R&D due diligence. The bigger task is running a thermo lab for determining the thermokinetic safety of bulk chemical processing. These two topics, patents and thermodynamics, would induce instant unconsciousness for most folks. An acute boredom-stroke followed by involuntary somnolence and collapse to the floor. Oddly enough, I rather dig these topics- especially the thermodynamics. A single fellow covering these two widely differing topics is entirely a(n) historical artifact, unlikely ever to be repeated.
Several months following throat cancer treatment, my energy and curiosity are back although I still cannot eat solid food due to impaired salivary glands and taste buds. The head-and-neck-onco-doc says it’ll take 1.5 to 2 years for the spitter to come back online. It is like serving a sentence in the Nestle warehouse living on Boost. I enjoy food vicariously watching the Food Network. This is what the term “food porn” means- watching others enjoy a sensory and emotional experience with food.
The year 2014 will see me spending more time with the urology oncologist. At the last appointment he promised to help keep me on the top side of the grass as long as possible. I have to hold him to it.
It’s been 16 days since radiation ended. My throat (oropharanx) seems better though the internal blistering has not totally subsided. Fatigue and boredom grind the soul like a rock in my shoe. I’ve collected new books on poetry and science but to no avail. Concentration remains elusive.
Eating is tedious. The g-tube pump is slow and I am not tolerating the nutrient fluid (i.e., “food”) all that well. Food tastes awful and swallowing is problematic.
My other cancer- prostate- is next on the firing line. I won the cancer lottery with an aggressive form that has spread to a lymph node but not to any bones according to the Tc bone scan. I am under hormone ablation therapy which slows down the spread for a few years anyway. We may start radiation in January. The docs won’t say anything about life expectancy. The urologist is disinclined to treat it surgically. At the UC hospital, they have a tumor board meeting every Tuesday where they discuss cases. It’s nice to know that multiple folks are looking at it.
A few observations for those facing irradiation of the throat.
- Don’t wait too long with your decision to get a gastric tube put in.
- Get started with a high calorie regimen early. By week 3 of 6, swallowing suddenly became very painful.
- Beware the constipating drugs. For me it has been the anti-nausea drugs and the narcotic pain killers. It is very easy to get behind the curve on this. Find a parallel bowel control regimen and stick with it.
- Some meds that promote bowel movement are too strong. For me it is Dulcolax.
- Mucositis is more than just a nuisance. Viscous mucus it produces will trigger gagging and vomiting. Pumping acidic vomit through a raw throat is exactly as fun as it sounds. Mucinex (aka guaifenesin) goes a long way towards keeping this in check. Out of about 20 nurses and docs I’ve had contact with, only one nurse seemed to know this trick.
- The so called magic mouthwash, Benedryl/Lidocaine/liquid antacid was too viscous for the mucositis.
- After 63 Gy of therapeutic x-rays and what I’ll estimate as ca 450 mGy from 35 CT x-rays, a surgical scar will be very sunburned if it was in the beam. It is important to keep it moisturized and covered. The pharmacy can compound an ointment composed of 2 % lidocaine in Aquaphore. This works very well.
It is important to let go of some of the independence and allow people to help you. The people around you want to help but feel unable to do anything substantial. Let them drive you around or bring food even if you can’t eat it. They’ll tell you about others they know who have had cancer and perhaps died of it. Even though it may not really be comforting to you, they are reaching out the best way they know how. You have to allow them this because they are under stress as well.
8/27/13. As of today, I have 3 more x-ray treatments culminating in a dose of 63 Gray to the throat. The pain has required narcotics pretty much continuously and the attendant constipative delights that go with that. Pills are difficult to swallow and the gag reflex is heightened. The final chemo was yesterday so I am done eating platinum.
I began hormone ablation treatment for an aggressive form of prostate cancer two weeks ago. While the throat cancer is substantially beatable, the prostate is a different story. Here is the deal fellas. While you can gauge with PSA numbers, it is the Gleason grading system that tells the tale. And to get that you must do a biopsy. In order of increasing severity, the Gleason score goes from 2 to 10. I pulled a 9.
Hormone ablation is delicate way of saying chemical castration. The spread of prostate cancer can be controlled somewhat for up to 2 years by shutting down testosterone production. This they do by injecting a synthetic peptide, Degarelix, into belly fat to control the dosing to the pituitary gland. Had my first hot flash a week ago. It was a eunuch sensation.
Interesting anecdote. My medical oncologist described an MD patient who had been using sunscreen on the radiated area of his throat. He soon experienced an increase in surface burning of the throat on continued x-radiation. Turns out he was using a sunscreen that had titanium dioxide that was scattering/absorbing radiation on the affected surface. He stopped and the accelerated damage ceased.
So, here I am wide awake trying to recall what the Ambien molecule looks like. I’ll probably have to look it up.
Later this morning is my 3rd chemo treatment of 6. Something is knocking me down. The x- radiation plainly has been doing what it does best- giving a 3-D sunburn. The throat is developing mucositis and Is crazy sore. Blistering should start soon.
I’m using magic mouthwash, comprised of lidocaine, benedryl, and Maalox. This pharmacy concoction has the snotty rheology of melted ice cream. The throat issue is definitely interfering with getting enough calories for body weight maintenance. Have lost ca 10 lbs to date. I’m gonna get a talkin’ to from the dietitian today.
Other than sore throat, the next unpleasant drug side effects are those from the anti-nausea meds. The anti-emetic meds prevent one from hurling through a sore throat. They are also very effective at constipation. So, one gets to know the offerings at Walgreens.