Joe Baker
Boiling Springs, Pa.
Copyright December 2020
Preamble
So here it is.
Diagnosis
I found out late last September that I have prostate cancer. I can’t say I was entirely surprised. The prolonged process of diagnosis included two PSA tests, an MRI, and finally a biopsy, and took three months. By the time my urologist sat me down and told me, I sort of knew what was coming.
Also mitigating the shock was the malady’s ubiquity in old farts (I’m 64). More than 10% of men contract it, and most of the afflicted are in their 60’s, 70’s or older. It is the second most common malignancy in modern males, just behind skin cancer. The underlying causes are not well understood, nor is its tendency to be more common and virulent in the African American community.
Prostate cancer is also a solid example of evolution in a head on collision with the wonders of 20th and 21st century public health successes. It was likely very rare before the last century, because we simply didn’t live that long.
If it is caught early and confined to the prostate, survival rates are high. My cousin was diagnosed nearly 30 years ago, and when he passed a couple years back, it was not from prostate cancer. If it is caught later and has metastasized into the bone marrow and elsewhere, the chances of surviving five years or more are much diminished. An old colleague and friend of mine got a late diagnosis a couple years ago, and he died this summer. My case, thankfully, seems to be early stage, but like life itself there is always some degree of uncertainty.
This new reality leaves me pensive. When I was in my 20’s and 30’s I had a real terror of mortality, so much so that I would have grim nightmares and terrors from time-to-time. Also, like many young men, I regularly engaged in high-risk behaviors of a shockingly wide variety, and numerous friends and relatives have wondered at my survival. Now, at 64, I no longer dread the void. Don’t get me wrong here: I’m not anxious to die anytime soon, I’m just not terrified. My own close brushes, and the painful loss of so many people so dear to me have granted me a degree of acceptance that I’m happy to have and count as a blessing. Curiously, with this acceptance has come the gradual diminution of the madcap lunacy that characterized much of my youth. Fear did not cause this, aspiration did. I’m too fucking busy. There is still so much to do and see and say, and my time is limited under the best circumstances. Why shorten it further? The remaining days, including even the very worst days, are all gifts, and I know it.
Consultation
I have the great good fortune to be attended by a number of physicians and medical professionals who are all in the same mid-to-late 30’s cohort. They are old enough and well-trained enough to be competent, not old enough to be embittered or indifferent, and by dumb luck managed to escape a variety of rigorous medical programs without having their personalities excised. Basic decency and a sense of humor are an important part of health care. Among these folks is my urologist, Andrew.
After breaking the bad news to me, we discussed treatment.
“Your Gleason Scores are almost all 6’s, which is great, but one is a 7. For patients with scores of 6 or less, we normally just monitor the disease and don’t treat. For scores of 8 or higher, there is often surgical removal of the prostate, which can be a nasty and bloody affair. In cases like this, a middle course of treatment with targeted radiation is a good choice. If I were in your shoes, that’s what I’d elect to do.”
“OK, so what’s involved in the radiation treatment?”
Andrew went on to detail the expected sequence. This begins with an injection of a powerful drug that greatly suppresses the body’s testosterone levels for a six-month period. It turns out that prostate cancer, like some breast cancers, is dependent on hormones. With the loss of testosterone, the cancer will go into remission.
“In fact, I could make your cancer go into permanent remission tomorrow. All I would have to do is remove your testicles!”
“I rather like my testicles. If you touch me, I’ll kill you.”
“Calm down! Purely hypothetical…”
The injection itself has side effects. The most obvious are a decrease in libido, some general malaise, and the occasional hot flash (Andrew termed it “man-o-pause”). Four weeks after the injection, I would have what are termed “gold seeds” implanted in my prostate. These are rice grain size pellets of gold that serve as targets for the radiation, precisely framing the tumor in three dimensions and allowing for the administration of radiation with astonishing accuracy. Two weeks later, daily treatments of radiation would begin, and would continue each weekday for 28 days. Following the treatment, I would need to be monitored for any recurrence for the rest of my life, but the treatment has been around for a long time and has a well-established and highly successful track record.
This seemed like a no-brainer, but the decision was complicated by a couple of considerations. The timing of things would require that the radiation treatments would coincide with the winter holidays and would certainly cast a pall on what are supposed to be celebratory occasions. They would also take place in the throes of the worst pandemic in a century. Contracting COVID while being treated with radiation would certainly not be pleasant and might be fatal. Given the gravity of the potential consequences inherent in a postponement, I made my decision on the spot. I gave my assent to the treatment and I put my trust in the professional caregivers who would supervise it.
I should say here that my trust was anchored in a life-long belief in the veracity and power of scientific inquiry. I am trained as a scientist, and I understand how it works. I grew up in a country where science was respected. Science put us on the moon, conquered polio, harnessed the atom, reconstructed our genetic and evolutionary history, mapped the earth and the visible universe, put the power of massive computers and satellite technology into a device that fits in my pants pocket, and generally made the unknown knowable. The scientific method is simply a way of methodical and data-driven problem solving. While it advances in fits and starts with plenty of failed ideas, ethical lapses, and incorrect assumptions, it works and is the best paradigm we have for understanding our world. I put my trust in verifiable and careful research and in the dedication and rigor of the professionals who conduct it and use the results for good. I like my odds.
Treatment
As anyone with prostate problems will tell you, there is really only one way to access the affected organ. Treatment involves a variety of usually kind and decent people who apologetically put their hands and sometimes instruments up your backside. The more invasive of these procedures mercifully take place under anesthesia. As I woke up in the recovery room after the implantation of the gold seeds, Dr. Andrew looked in on me.
“How are you feeling?”
“I’m coming around. How did the implantation go?”
“I would characterize it as a slam dunk. I even hung on the rim for a bit!”
Despite my grogginess and the surgical mask that covered my lower face, I was able to give him a glare baleful enough to cause him to scuttle giggling out of the recovery room.
A week later my care was transferred to a radiation oncologist and his nursing and radiation technology staff. The good doctor is much more formal than Andrew, probably a product of the deeply technical nature of his specialty and its frequently dire nature, but we bonded over those technical issues. He asked me if I had any questions about my course of treatment.
“Yes. I was wondering if the radiation is to be administered…how shall I say this…internally or externally?”
“Ahh! An excellent question! It shows you have given this some thought!”
Indeed, I had.
The good news was external administration is the normal practice. The good doctor’s commitment to care and healing were obvious, and he seemed to be happy to have a patient interested in diving into the technical weeds with him.
The initial consultations took me through the nuts and bolts of the treatment, its efficacy, and its side effects. The radiation is guided by a number of rigid metrics that must be utterly precise and those first visits involved preparations meant to guide a tiny beam of radiation to a target measured in millimeters. After all, this is the same atomic radiation emitted by the Hiroshima bomb and the Chernobyl reactor, and carries the same destructive potential. As Dr Oppenheimer knew, it is nothing to fool with.
To that end, I was asked to appear at the clinic in loose clothing and a pair of shoes I could wear for every treatment. I was whisked back to a CAT-scanner and laid prone on a table. A mold was made of my legs and shod feet. This would lock my legs firmly and precisely in place throughout the course of treatment. Simultaneously the scanner made an image of my prostate that would guide the radiation. To ensure that the alignment remained consistent, a series of three bullseyes were marked on my skin with a Sharpie. To someone who has spent a career carefully labeling uncountable field bags of artifacts and samples with these same indelible ink pens, it certainly seemed that the spirits of those whose possessions I have dug up over the years had now exacted a deeply ironic and witty revenge.
Prior to the first treatment I was told how to prepare and what to expect. Each treatment would take less than 15 minutes or so. A successful treatment involved appearing with empty bowels and as full a bladder as possible. The full bladder would ensure that the upper bowel was pushed out of harm’s way as the radiation was administered. It would also ensure that I was pretty uncomfortable during each treatment. Even with these preparations, there would likely be some mild to moderate side effects, all of them below the belt. Frankly, they didn’t sound too bad, and they definitely sounded better than metastatic cancer. On Tuesday, December the 1st, the radiation treatments began.
Daily treatment begins at home by pre-charging the bladder with copious and timed draughts of coffee and water. Since my treatment coincided with the massive spike of coronavirus in the late fall and early winter of 2020 and 2021, each arrival at the oncology clinic began by passing through a gauntlet of two sets of COVID questions, a digital thermometer, and the issuance of a disposable mask to replace my cloth version. I would then be whisked through the waiting room and sent instantly back to radiology.
The radiation apparatus looks like something out of Star Wars. There is a table that feeds the prone patient into a massive whirling white array of machinery that looks a bit like a dragon’s mouth. The machine includes both imaging hardware and a radiation emitter. The table can be moved in 3 dimensions in millimetric increments. Treatment for the prostate involves lying flat on your back, with your legs locked in the mold and your pants hiked down as the table draws you into the maw of the machine. There is not even a trail of breadcrumbs back to your dignity, but the radiologists are kind, decent and professional people, and that helps. The CAT scanner ensures your bladder is full and allows for the finetuning of the table to its precise optimal location. As the beam of radiation is activated, there is a high-pitched whirring noise as the machine rotates around your nether regions. In short order the whole procedure is over, and you can rush to the bathroom to pee, then drive home.
The daily repose on the treatment bed requires you to be absolutely motionless, despite significant urinary urgency. It is also attended by piped-in music, which being the holiday season, was usually a variety of old chestnuts like Elvis (Blue Christmas), Bing (White Christmas), Nat (Merry Christmas to You), and so on. One especially surreal morning broke with the seasonal theme to include Pink Floyd’s “Comfortably Numb”. For those of you who are unfamiliar with it, it’s an electric guitar and synthesizer anthem with lyrics evoking the involuntary administration of powerful psychoactive drugs to a terrified, shrieking and restrained patient.
Perhaps surreal is not strong enough, but it’ll have to do.
Side Effects
In the midst of my treatment, a dear old friend checked in by phone from LA. Mike is a real live wire who goes way back with me. When I broke the news, there ensued a discussion about the details, including how I was feeling. I copped to the intestinal discomfort I was enduring, and then he got a little more personal.
“So what about you-know-what?”
“Well to be honest, if somebody walked in here with a pistol, put it to my head, and told me I had to perform or else…”
“You’d be toast! They’d have to call the fuckin priest! Last rites motherfucker!!”
And so on…The hysterical laughter felt really good. The reality is pretty tough.
My digestive tract is irritated and inflamed by radiation, with the expected results. Viagra jokes aside, your sexuality is a central component of who you are, and the treatment’s side effects can leave you feeling like someone else, someone much duller and sadder, is inhabiting your body. In the late stages of the 28 days of treatment, life is distilled to just holding on: eyes on the prize.
But there are also unlooked-for side effects for which I am grateful.
My daily visits to the clinic, like the rest of my life in this pandemic, are as isolating as possible. I am kept out of the large waiting room near the entrance and whisked back to a smaller waiting area in radiology. I’m rarely in this area more than a few minutes before being treated. Even so, I am not alone. Each morning I see the others, 6 feet away, masked like me. We acknowledge each other with a nod, a hello, small talk. In all of our eyes, which is all any of us show to the world, anxious anticipation is visible. In some there is weariness or pain. In others, terror or resignation. The diagnoses, specific treatments, and the progress of both treatment and disease dictate the nature of our expressions. We are in a strange way, of a tribe. My mother and her sister, Italian immigrants, would have called us gli afflitti di Dio, God’s own afflicted. As such, tradition held we were blessed with a status of knowledge and understanding that brought us nearer to the Almighty. Maybe there’s some truth to that.
I live in the white, Appalachian heartland. My roots on my father’s side go centuries deep into rural Pennsylvania, and I like it here, but in the last few years I have seen more of the bad in this place than the good. I have come to detest the meanness, the casual bigotry, the selfishness and jingoism, the appeal to violence, the disrespect for education and scholarship, the devaluation of the environment, the ignorance of history, the mindblowing gullibility and willingness to succumb to utterly ridiculous conspiracy theories and obvious lies: the things that led inexorably to the events of January 6th. My anger has eaten away at me. I need to put it down.
Anger leads inevitably to hatred, and hatred requires that you view the source of your anger as less than yourself. A look into the eyes of the other folks in the oncology center is convincing evidence that we are the same. The ICU at our little regional hospital is now full of folks who saw COVID as a hoax and saw wearing a mask and taking precautions as an assault on their liberty. I remain disgusted by that kind of thinking, but I simply can’t hate them. They are suffering and, in some cases, they are dying. They too are God’s own. So are their terrified and bereaved families.
Things have to change. We must all understand that people who are different from us are our equals. The path to that understanding leads through dialogue, listening, and forbearance. It requires recognition of our common frailty, imperfection, and mortality. It requires endless patience. It mostly requires kindness. This path leads away from hatred, to a place of quiet and of grace.
I have learned that journey does not begin with other people, but with me. I learned that from my illness, from the other patients, from the kind and heroic technicians and nurses and doctors who care for all of us without judgement. This understanding is priceless. I am humbled in the face of it.
Redemption
Shortly after my diagnosis, I was sitting on my back porch having a socially distant conversation with a dear old friend. He’s had some prostate problems too, and he has an appointment coming up with his urologist. When I asked if anyone else in his family had prostate cancer, he mentioned his father.
His dad was a Scottish immigrant, who lived to be 90-something before passing a couple years ago. Sometime after his 90th, he had taken his father for a physical, and then met with the doctor.
“I must tell you your father has a greatly enlarged prostate and a high score on his PSA test. It’s probably cancerous.”
“I see. What’s to be done?”
“Well given his age and other infirmities, we probably won’t treat it. I just thought you should know.”
“OK. Well, I’ll be sure to update his Tinder profile then.”
Make no mistake about it, it’s the love and good humor of your friends and family that will carry you through things like this. I haven’t told a lot of folks about the diagnosis, but the small circle of people who know has drawn tightly around me. The support is usually quiet, a touch on the shoulder or a little hug, offers to run errands, simple endearments, but the affection is palpable. Distant family and friends call me all the time. One of my former field directors sends me a card at the end of each week of treatment. I am “checked on” daily and it holds me up.
I am deeply moved by this. Frankly, the only thing I’ve done to deserve it is to try not to be a prick. I don’t think the reason you treat people well should be an expectation of reward or support. Good is worth doing for its own sake. But there is no denying that the best guarantee of kindness from the people in your life is your own decency. Do not ever forget that.
Another source of succor has been attention paid to my own health. Since treatment began, I have missed no workouts. COVID has kept me out of the gym, but I have adapted, and I push my body for an hour or so six days a week. I have intentionally lost 15 pounds over the course of treatment. The great value of exercise and healthy eating is as much psychological as it is physical. A cancer diagnosis can rob you of agency, but some attention to the rest of your health can restore your sense of control. The feeling of pushing through a long hike or multiple sets of pushups, even when the treatment has left you tired and cranky, is empowering and exhilarating. My daily regimen has made me feel like I am punching something I can’t really control squarely in the mouth.
It’s worth noting here that constitutionally, I can be a little combative. This has not infrequently gotten me into trouble. You can ask anybody.
Finally, there is a sense of the spiritual that carries me along. As I am a confirmed heathen, this is tricky ground. The devout seek enlightenment and deliverance in Providence. That’s not for me. But I meditate, and I read. I become absorbed in the quiet mathematical beauty of guitar practice. I becalm myself in nature. My deliverance comes in the pre-dawn hoots of the Barred Owls now nesting and courting in a woodlot near one of the walking paths I frequent. I glimpse eternity in trout finning in the Letort or the Big Spring. I am struck silent and contemplative at the sight of a glorious winter sunset over fields and behind the South Mountain. Many of the thoughts expressed in this essay, and the warp and weft of its fabric, came to me while walking in the woods. I am humbled in the quiet grace of the wild, and I see my place therein.
And I am alright.
Ring them Bells
At the entrance to the radiology treatment room is a large brass bell. When you have your final treatment, you get to give it a vigorous shake and make a little celebratory noise. Next Monday will be my turn. Two of the radiologists that care for me reminded me of the upcoming ceremony just yesterday.
“You should be excited to graduate! We’ll fit you for your cap and gown!”
“Yeah! Of course, the gown is open in the back…”
When the epidemic ends and the clubs re-open, these two really should start a stand-up act.
After the bell ringing, and my usual quick trip to the rest room, there will be a final visit with the oncologist, and the handoff of my care back to the inimitable Dr. Andrew. I will walk out, get in my car, and drive away into the rest of my life. I won’t actually know how successful the treatment was until I get some test results back. I do already know that it has changed me, though I am still considering exactly how.
This has not been my first brush with mortality. I am always aware that no day is guaranteed. That hasn’t changed. But cancer is different. I’ve had many friends and family perish from it. Two of them stand out for me: my darling aunt decades ago, and my dear brother-in-law in 2019. I watched the gradual, insidious and painful decline that preceded their deaths. But I also saw their nobility, wisdom and patience in the face of it. They taught me something about the here and now, and about the beyond. Their sense of humor never failed, nor did their kindness. They spoke openly and they showered care on their families and friends as they themselves were cared for. They were certainly God’s own.
It turns out that knowing how to live, is also knowing how to die. Who knew?
I have no idea if this malady is what will get me, or if something else will. Like everyone fortunate enough to live beyond my middle years there is a black shadow over my shoulder, and I don’t yet know what it looks like or when it will touch me. But it doesn’t really matter. There are people in your life that need your affection, your experience, your understanding. There is always work for your hands. The kindness you impart and the living memory of it will be the measure of your significance in the great whirling and endless wonder of the universe.
The point of it all isn’t to look over your shoulder. It’s to look forward toward the horizon and all the light.
On the morning of January the 11th, 2021, I rang the bell.
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If you or someone you know have been affected by prostate cancer, you might find these resources helpful.
The Prostate Cancer Foundation https://www.pcf.org/
Prostate Cancer Advocacy Groups and Organizations https://prolaris.com/prostate-cancer-advocacy-groups/
Guide to Support Groups in Your Area https://www.ustoo.org/Support-Group-Near-You
This essay is dedicated to the doctors, nurses, and other healthcare professionals who are helping to keep me and many others on this side of the grass, to my family, friends, colleagues, former employees, and interns who love me, and to my fellow patients. You’re all in my heart forever.
