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Unspoken: Cancer's Dehumanizing Late Effect

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I watched a 33-year-old man sobbing. He stared at me, tears pooling in his eyes until they streamed down his cheeks and he looked away. He buried his face in his hands, his charcoal suit jacket and wedding ring restricting the body convulsions and flow of the tears. I stood frozen watching him, unable to look away or console or forget what he had just told me.

G. asked me to join him for a beer following his professional organization meeting where I had been the guest speaker that evening. I share my story of surviving two childhood cancers anytime audiences will have me. I hope everyone regardless of your medical history can relate to my story, but G. really connected, and our bar tab accelerated.

"I know we've never met, but I feel closer to you than my best friends," G. said. "I got cancer in my left testicle when I was a teenager, around the same age as you when you had your first cancer. Several years later it returned in my other testicle. I've been cancer-free for a long time, now.

"I've never told anyone this besides my wife. I refused to discuss it. I know I'm a stranger to you and this must seem really weird. It's just something about your speech that touched me, and talking with you now I feel a powerful urge to tell you.

"Because of cancer treatment I can no longer get an erection."

***

Sometimes people share things with me because I had cancer.

During a rehab session, my physical therapist told me about the time he nearly burned his house down as a kid. He would set the large field behind his house alight just to watch the fire trucks, but one time he left something smoldering in the rubber trashcan in the back of his house, and it started burning. "Somehow we noticed the huge flame and managed to contain the fire," he said as I lost count of my leg lifts to strengthen my hip flexors. "It could've been really disastrous."

***

G. provided me with graphic and personal details, while teaching me. I sensed that he needed to share so I listened, and later researched what he shared on my own.

G.'s dysfunction was slow and progressive so he could not pinpoint when it began. The first time it registered was during a date with his now-wife, after they'd been seeing each other for a few months. He even detailed for me the precise moment his dysfunction registered, which I think haunts him: they had each had a couple glasses of wine at a bar with a live jazz band. She reached for his hand and their fingers locked. He knew he would get to share her bed that night.

An erection begins in the brain. Mental stimulation cause nerves in the brain to tell nerves in the penile blood vessels to relax so that blood can flow freely. He imagined undressing her, button by button; her soft skin, warm to the touch.

Once blood flows into the penis, high pressure traps it within both corpora cavernosa. This causes the penis to expand and sustain an erection. G. would turn off the lights and take her under the sheets. He would explore her with the senses other than sight.

Then he stopped imagining because he felt nothing.

***

At a book signing after my memoir released, an upbeat man and I talked about the Baltimore Orioles, our favorite baseball team. Opening Day was a couple months away. The perennially stinky Orioles would begin the season equal with the Red Sox and Yankees, a fact that brought us excitement and hope each year.

The fit man who looked too young for his silver hair picked up my book and read the back matter. "You've been through a lot," he started. "Besides watching Orioles games during the summer, I'm a general contractor. I've always been in construction; I don't know how to do anything else. I love physically creating beautiful things from nothing.

"Twenty years ago I fell off a beam and broke my back in two places. I was stuck immobile in a hospital bed for weeks. Thank God I was able to walk again after months of rehab. But I can't bend to pick things up. I wake up each morning so stiff I can barely breathe. I live off painkillers. The worst of it is that I can't ever do the actual work on-site. I miss the creation.

"I haven't talked about that in almost 20 years."

If I see him again then we will discuss something we wouldn't have been able to for almost 15 years. The Orioles are contending for the playoffs for the second straight year.

***

Nocturnal erections occur in healthy males of all ages. The average man has three to five per night. A lack of nocturnal erections suggests a physical instead of psychological problem. G. observed how many times he woke up with an erection. He placed a notepad next to his bed. He put the notepad away after a month with zero tallies.

G. saw a urologist who gave him samples of penis pills by the bagful. He hid one pill in his wallet in one of those small zip lock bag that many people associate with weed. Now when he was with his girlfriend all he imagined was swallowing the pill at least 45 minutes before he needed it and without her knowing.

Over time the number of pills in his zip lock bag grew to four, and now he imagined his heart stopping due to penis pills. He again saw a urologist who said the pills don't work for everyone, but one treatment does: an injection.

His first injection had to be in the urologist's presence. G. filled the syringe and cleaned his penis as instructed. Holding his penis along his left thigh, he looked at the urologist one last time for confirmation. "You really want me to stick this needle into my fucking dick?"

He inserted about halfway up and on the side, avoiding visible veins. The needle penetrated without much pain. G. pushed it the rest of the way and then injected the three-drug compound. He removed the needle as carefully as his shaking hand would allow, pressed an alcohol swab on the site, and then waited. "Give it a few minutes and then play with it," the urologist said. "You're going to be hard as a rock." G. honestly hadn't expected the penis doctor to be so funny.

G. waited, praying, imagining anything but penis. Without any mental or physical stimulation, he felt it expand. Then he barely touched it and it took off like an airplane. He put his pants back on, now bulging, before the doctor who cured him returned. "Jerk off as soon as you get home," the doctor instructed. "I'm not kidding."

G. got home before his girlfriend and followed the doctor's orders. He imagined ways to cure himself without her knowing -- hours and hours pondering -- but didn't think it was plausible. He was also tired of being sneaky and of the burden of constantly planning for when they have sex or making up excuses if his planning was inaccurate.

That night G. told her the truth. Without gross assistance he couldn't perform the function that defines a man, questions if he is a man, and questions the reason to live if he is not a man.

***

A wonderful family let me stay in their house when I was receiving outpatient chemotherapy because it was close to the hospital. I just had to abide by A.'s rules. After my surgery, I could only use a walker in the house even though I had graduated to crutches. I had to try eating even when I had no appetite. There were other rules.

After chemo one afternoon I was resting on my usual couch. A. asked me to turn off the TV for a minute. She stood in front and asked me not to interrupt. She explained that the house rules were all she could do to protect me, because she loved me.

A. said she had always been scared of doctors, hospitals and medicine. She was born with a heart condition, and her parents took her to see many doctors who placed her in rooms separate from her parents. Other children were dying around her and she was given a slim chance of surviving. All she could do was keep her mind busy, so she motioned letters in the air with her fingers.

A. couldn't control my cancer, her heart or her tears that afternoon, so she controlled whatever small things she could, still keeping her mind busy.

***

They say that sharing one's vulnerabilities begets a sense of closeness in others. For some like A., my illness alone was enough for her to share her biggest fears. For G., hearing my dual cancer tale led to his need to reciprocate with his secret. For some time now I have felt an obligation to share his "late effect," a broad term defined as health problems resulting from cancer treatment, which occur months or years later. It needs to be said.

Being around other cancer patients and survivors is rewarding for me. It refreshes the perspective I have earned, which unfortunately sometimes fades. I also benefit in a way that makes many people uncomfortable though they can't say why other than "it's wrong," and I agree with them: I gain a sense of well-being when I see or hear of late effects that I have avoided. Many of cancer treatment's late effects are unthinkable, but few have ever made me think, "Would I be able to handle it?"

A cancer sex counselor told G. that he is not alone and that there are many other ways to be intimate. G. said that was comforting. "My wife has to keep saying that it isn't me, but rather what was done to me. That's the only justification that keeps me from losing my identity," he said.

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