Nine-and-a-half weeks

​Driving home on July 1, 2020, at 9:30 p.m. after an evening medical appointment (which had been delayed a full day from my usual morning slot due to unforeseen equipment problems), the sun had set recently, replaced in the darkening sky by a waxing gibbous moon. The temperature had cooled about a dozen degrees from the daytime high in the low 90s.

​Traffic light, the two-mile drive along the surface streets from the clinic to I-75 was gratifying. The car windows down; sunroof open; Real Jazz on SiriusXM — “On Green Dolphin Street” to be followed by “A Love Supreme” — flowed from the speakers; amateur fireworks exploded silently in the distant sky before raining down glittery embers that vanished quickly from sight.

It was, for me, an extraordinary moment of pleasure of a different kind and the start of an entirely new journey.

I had just completed day eight of week two of proton beam radiation for prostate cancer.

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​No one wants to be told they have cancer. It is scary, and the distressing news changes you physically and psychologically. You immediately start the countdown to the end of your life, rightly or wrongly.

I was just 47, with a wife and 14-year-old son, when I was originally diagnosed in February. It came less than a month after my mother was diagnosed with Stage 4 pancreatic cancer that would end her life by that Spring. I worked out regularly and had taken up running in my late 30s after having been a moderate smoker as a single twenty-something-year-old. Following a positive biopsy that showed the presence the cancerous cells in the prostate, I had come to learn far more than I ever wanted to about the disease — including the long-term survivability, the pros and cons of the different treatment options and its impact on male sexual performance.

Prostate cancer is cancer that occurs in the prostate, a small walnut-shaped gland in males that produces the seminal fluid that nourishes and transports sperm. The gland sits below the bladder and in front of the rectum in men. The prostate adds fluid to semen, and its muscles help push semen through a male’s urethra when he orgasms.

It is one of the most common types of cancer. Many prostate cancers grow slowly and are confined to the prostate gland, where they may not cause serious harm. Some types may need minimal or even no treatment. Early detection — when the cancer cells are still localized or confined to the prostate gland — offers the best chance for successful treatment.

Left untreated, however, the abnormal cells can grow to invade nearby tissue. They may even break away and spread to nearby organs, such as the bladder, or travel through the bloodstream or lymphatic system to a man’s bones or other organs. Once prostate cancer has spread, it may still respond to treatment and may be controlled, but it's unlikely to be cured.

Black men are 70 percent more likely to develop prostate cancer in their lifetime and twice as likely to die from it than white men, according to medical professionals and research literature. We also tend to get prostate cancer at a younger age. I have several family members and friends who have been treated for prostate cancer in recent years.

“There is evidence suggesting that this is partly related to inherited genetic factors,” says medical oncologist Andrew Laccetti with Memorial Sloan Kettering Cancer Center. “There may be differences in tumor biology that cause this cancer in Black men to progress faster or be harder to treat, but we need to investigate this possibility further to learn more.”

Additional factors include a history of mistreatment in the healthcare system that may contribute to mistrust among Black men and the lack of regular screening. Whatever the reason, delayed or no action at all can increase the likelihood of significant progression in the disease before the onset of symptoms. The disease killed my paternal grandfather about 40 years earlier after the cancer had spread before detection. (One of the proposed treatments for my grandfather at the time was a double orchiectomy, i.e., the surgical removal of his testicles or castration.)

My prostate cancer was detected early, thanks to annual screenings my primary-care physician insisted on. After feeling a small lump during a routine digital rectal exam (DRE), my doctor referred me to a urologist who then ordered a biopsy. The procedure — a particularly unpleasant and agonizing experience, which included days bloody piss post-biopsy — confirmed my fears of having the disease. It was later determined the prostate cancer was of a low-grade variety. (More praise for early detection!) So rather than rush into some type of aggressive treatment, my urologist recommended “active surveillance.” In place of surgery or radiation, the active surveillance (sometimes referred to as “watchful waiting”) would entail having a DRE and blood work every six months to measure the Prostate-Specific Antigen (PSA) in the prostate. PSA is a protein produced by normal, as well as malignant, cells of the prostate gland. A high or climbing PSA number can indicate the presence of cancer cells.

The less aggressive course of action was a welcomed relief, physically and psychologically. I had become acutely aware of the potential impact to my sex life after some treatments, including nerve damage that could prevent the ability to get or sustain an erection, no longer being able to ejaculate semen and incontinence. A prostatectomy — surgical removal of the prostate — also could invite complications, like a urinary tract infection that former U.S. Department of Defense Secretary Lloyd Austin experienced a week after his surgery.

I remained under active surveillance for eight years — from February 2012 until March 2020 — when it was determined the cancer had progressed to the point of requiring treatment. However, after years of relative stability in my PSA and unremarkable DREs, something changed. A sustained increase in the PSA (which had risen slowly but steadily in the two or three most recent tests by early 2020) and another biopsy confirmed the disease progression. The cancer was still confined to the gland, thankfully, but subsequent genetic tests revealed it to be a more aggressive, high-risk strain.

I was again faced with the weighty decision on treatment options -- prostatectomy or radiation therapy. There had been some technological advancements in radiation therapy in the eight years since my original diagnosis. Upon consultation with my radiation oncologist, independent research and conversations with my supportive wife, I opted for the more advanced proton beam radiation, a form of external beam radiation therapy. It is a highly targeted and painless treatment that destroys cancer cells in the prostate while reducing radiation exposure to the bladder, rectum and other gastrointestinal organs. Studies suggested fewer side effects with proton therapy compared to traditional radiation, which exposes healthy tissues and organs to a wider field of unnecessary radiation. And surgery was off the table for me.

My proton therapy regimen — which would last for 46 days — included androgen deprivation therapy (ADT). Weeks before my radiation began, I had received the first dose of what would be three painful ADT injections in the abdomen over 18 months, administered at six-month intervals. Because I had been diagnosed with high-risk localized prostate cancer, ADT is an important treatment, my radiation oncologist counseled. The hormone suppresses the androgens that stimulate the growth of prostate cancer cells, providing for more effective radiation treatment. 

The reasoning seemed solid for this patient. What I did not fully appreciate was the effect low- to zero-testosterone would have on an active, physically fit man like me.

The main androgens in the male body are dihydrotestosterone (DHT) and testosterone, essential ingredients for the male libido and sex drive. With little to no DHT and testosterone circulating, there would be no sexual eruption.

I have never felt more alive than when in the passionate hold of physical intimacy. Moreover, my pilot light was an eternal flame, ever ready to fire up my desire for sexual gratification. In the early days of my marriage, my wife and I routinely stole away for a little afternoon delight, taking full advantage of the fact our offices were just minutes away from home. Even after crossing the half-century mark in age, when, as a young man I was sure my libido would have cooled by then, the flame continued to burn as intense and bright as ever.

Our intimacy is connection. It was a form of disconnection, too, from all that bothered or worried me, if only for those treasured moments. A salve for wounds. A fix for all that was broken.

Where would I find such blissful detachment now?

I recall vividly the instance everything changed. After a short-lived period — a couple of weeks — of heightened libido following the first ADT injection, my pilot light was finally snuffed out. So abruptly, in fact, I could not even pretend. It was gone — snap! -- just like that. I had been chemically castrated essentially. The heat of passion replaced by daily hot flashes — a side-effect of ADT — that left my face and torso drenched in sweat.

Fortunately, I managed to continue my regular morning workouts over the succeeding weeks of treatment, even as my strength and energy flagged somewhat. And then one day during a treadmill run, I caught a glimpse of my reflection in the mirror. What I saw unnerved me — a short, sluggish and unattractive man with diminished muscle tone in his legs and arms, and a slightly protruding belly pressed against a sweaty t-shirt.

Already, I had become increasingly nagged by second thoughts of whether radiation was the best option, given the daily commitment Monday through Friday, among other reasons. I was averse to undergoing a prostatectomy, particularly at a time when the COVID-19 pandemic was raging and so much was still unknown about the virus’ transmission and its spread in the hospitals. The prospect of significant sexual dysfunction, catheter and other potential side effects also worried me considerably. Proton beam radiation would spare me the severe side effects, I hoped. However, I learned that while that may be true, there were sexual side-effects, nonetheless.

Of course, I’m not as fast as before. I can no longer touch the rim on the basketball court. My hair is undeniably grey. My career prospects have largely plateaued, as I am long past the day of being considered the rising young Black guy with talent and potential. Yet despite all that I maintained a certain sexual prowess with my wife. Now, this “old man’s disease” left me feeling like an aging prizefighter, trying desperately to recapture the power, speed and finesse of my younger days. My reflection that morning was visual proof that time had caught up with me, delivering a sobering reminder of my own mortality.

Prostate cancer treatment cannot be discussed adequately without addressing its effect on male sexuality and performance. Although Black men indisputably face a higher risk of getting and dying from prostate cancer sooner than non-Black men, the psychological impact may be even greater for those of us whose virility and “BBC,” according to popular culture, is the stuff of myth and caricature. Nonetheless, the disease and its treatment delivered a kind of next-level vulnerability, the sort of which American men of a certain age of all races have been taught since boyhood to suppress.

I almost stopped running that morning to spare myself more despair. Looking back, I am glad that I did not. I got stronger as I ran on. Not trying to hide anything, my grey hair that once looked tired, beaten and matted became a source of pride. I had, in fact, accepted some time ago that it was my truth. And I resolved right then: I am more than the two-dimensional man in the mirror. 

However, the radiation therapy would continue for another six weeks. So, too, would the daily challenge of trying to maintain a full bladder, as required while I underwent radiation, without pissing on myself. Laying on the treatment table for prolonged periods — beginning with 45 minutes at outset before gradually tapering off to 30, 20, 15, 10 and 5 minutes in the weeks to follow — with an explosive urge to pee sometimes felt like too much to bear. The earliest weeks were, at times, torture, as I struggled to get my daily pre-treatment water intake right. Moreover, timing was crucial to allow my bladder to fill without it becoming unbearable before the treatment session concluded. The slightest interruption could upset my carefully orchestrated hydration regimen.

After being informed during a different appointment of another delay in my scheduled treatment due to a network issue with the proton beam projector, the dam broke. Realizing I would need to piss and then drink more water before my session began, I could no longer contain the pent-up frustration I had begun to feel about the entire medical ordeal. So, I snapped a “What!?” at an otherwise compassionate proton beam radiologist who had the nerve to ask an innocent question of me, as I busied myself with some meaningless distraction on my iPhone. Her alleged offense was having the audacity to disturb me while I sulked in a corner of the waiting room when, in actuality, it was merely her attempt to offer a few words of empathy, some comfort, for the annoying setback. (I never got the opportunity to apologize. She had retreated behind the double doors to the treatment area, leaving me alone in the waiting room.)

A month after completing nine-and-a-half weeks of proton beam therapy, I expected a quick return to sexual normalcy but that would not be the case. My libido was still dormant, and our intimacy uncomfortable as a result of the radiation. In the ensuring weeks and months, I feared that I had moved away from being merely disinterested in sexual intercourse to feeling borderline repulsed by the thought of it. My mood felt increasingly like surrender. In the absence of the urge for physical intimacy, I became lost and fearful of embarrassment.

Years ago, as a pre-adolescent, I remember sneaking a peek at one of my older brother’s Playboy magazines and snickering at a comic that showed a naked woman and man seated on a bed. The woman, looking down at the man’s concealed crotch, asks:

“How do you expect to make beautiful music with an organ like that?”

How different that joke felt now nearly a half-century later. Erectile dysfunction snuffed out the laughter. Even when I felt a flicker of desire, I worried it would fade quickly, as it had on previous occasions. Other times, my energy level was gone by the end of the day. I just want to go to sleep. The experience was a foreign invasion into a space where I once felt confident, protected and fortified.

Depression took hold. I longed for my old self. The current me, at the time, experienced no joy, no pleasure. Worse, I wondered if and when the thrill would ever return, even as the side effects of chemical castration, i.e., ADT, began to subside months later.

Unbeknownst to me at the time, the answer to my vexing concerns had already begun to reveal itself.

Music changes over the ages. The question is not whether it is better or worse than before. Instead, it is whether the music continues at all, making creative use of the instruments available at one’s disposal.

One afternoon in mid-July following a treatment session, I switched to Watercolors on SiriusXM for the drive home. I rarely tune into the smooth jazz station, preferring Real Jazz instead. In addition to classic jazz’s rich history, I enjoy its vitality, improvisation and the complexity of the mostly acoustic ensembles that create the sound. But, on this day, I needed a break and something different, enough heavy lifting for now. I had been irritable throughout the procedure and chalked it up to the dog days of treatment. I was only half-way through treatment and the thought of another four weeks weighed on me. At the same time, wishing for its conclusion meant wishing for the end of summer. That meant speeding up my life when the time should not be wasted. Perhaps, I figured, a different vibe of some smooth jazz would ease my anxiety. On this day, I heard the beautiful, melodic voice and lyrics of Ashleigh Smith as she, accompanied by Chantae Cann, sang “In the Rain." The song provided a reminder of how sometimes “you gotta make your own sunshine in the rain.”

Sometimes you've gotta laugh instead of cry
Smile if you can't find a reason why
You've gotta dance to ease the pain
Know that it won't always be this way
When your life turns your world around
And you can't seem to find your up from down
You gotta make your own sunshine
In the rain

A period of self-pleasure, indeed, during those treasured minutes of the song. For the charming lilt of Ashleigh’s voice was unburdening, not unlike my wife’s sustained tenderness from the first diagnosis years earlier through disease progression and multiple procedures to eventual and complete remission. (It’s been five years this August.) In hindsight, the music signaled that perhaps the physical labor I endured over those past several weeks — and in the weeks yet to come — was slowly giving birth to a new me.

Spirits lifted, I was transported in that moment back to that evening drive just weeks earlier when I witnessed from afar the fireworks’ glitter falling quietly and gently toward the ground. Right then, as before, I never felt more alive; blissfully detached.
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