I have a vivid memory of the urologist walking into the exam room, saying, “You have cancer!” This was a shock to my mind, body, and spirit, a gut punch. I also remember the first time when, as the officer of the deck, I took a nuclear submarine to periscope depth as an ensign in the U.S. Navy. How do these memories differ?
Submerging a Submarine
Taking a submarine to periscope depth is challenging and potentially dangerous. But I had been trained and deemed qualified to be the officer of the deck, which allowed me to bring this 350-foot ship to periscope depth and conduct some business. I was nervous, but confident. I gave the order, “Diving officer make your depth 68 feet.” This put in motion a series of events to ensure we could operate safely. I announced, “Raising number 2 periscope,” and started my safety search. There was a flurry of announcements and orders to follow. The periscope broke the surface, and I conducted a quick search in a 360-degree fashion to ensure there was no collision threat or any other threats. Everything was fine, and we conducted our business and returned to our operating depth.
Contrast this with being told I had cancer. I was not trained to receive this type of bad news. Before the biopsy, the doctor said I had a 25% chance of having cancer, but I focused on the 75% chance that it would be benign. As I said, this was the biggest gut punch of my life.
So, in August 2018, I got on my motorcycle to go to the doctor’s office to get my prostate biopsy results. I was in a good mood, expecting good news. My wife was away visiting her daughter in Hawaii. I was sitting in the exam room feeling calm and a little impatient; doctors are always running late. The door opened, and that’s when the urologist said, “I have good and bad news. You have cancer, but it was caught early.”
Stuck on the Word
At that moment, my world got dark and very lonely. The doctor kept talking, but I was stunned, in a daze. I heard what he was saying but did not process much; I was stuck on the word “cancer.” He set me up to have surgery.
I left the hospital and a feeling of profound loneliness washed over me. I got on my motorcycle and rode. I found my way to the ocean, which is the place where I find peace. I sat on a stone wall, feeling the ocean, and a deep fear was building in me.
A couple of years earlier, my primary care doctor noted that my prostate-specific antigen (PSA) was creeping up and referred me to a urologist. I met an excellent urologist, who ordered additional tests and said I was fine. The next year, my PSA was slightly more than 4 ng/mL, so my urologist said I had a 25% chance of having prostate cancer, “and we should do a biopsy.” What I internalized was not to worry; this was just another test. My wife and I were clear on this, which is why she was not with me to hear the biopsy results.
Calling My Wife
Now I had to muster the courage to call my wife, the most important person in my life, to tell her I had cancer, knowing that she had lost her first husband to cancer. I was overwhelmed with fear of burdening her with this news while she was thousands of miles away.
This was the hardest phone call I have ever made. I dialed while sitting on the rock wall by the ocean, trying to figure out how to tell her. The phone seemed to ring forever, and then my beautiful wife’s voice came alive with a pleasant greeting. I was devastated, but I had to tell her.
I am not sure what I told her, but it wasn’t long before we were both crying. I thought that I was a tough guy. I grew up on the streets of New York City, I am a retired naval officer, and I was afraid! Fear gripped my being, my soul, and I was lost about what to do. My wife and I agreed we would get through this, and I told her how much I loved her, then hung up.
I looked at the ocean, and felt cold and very dark. The heaviness of this new reality was like the waves crashing on my soul; it was clear that the waves were not going to stop.
Almost 5 years have gone by now. During that time, I studied my treatment options, including active surveillance, surgery, and radiation. It was a most confusing time. Every doctor pitched their specialty, and then said it was up to me.
Finally, I developed a process to evaluate the most relevant options, which for me were surgery, external beam radiation, or high-dose rate brachytherapy as monotherapy; I chose to evaluate each option based on the following categories: difficulty of the procedure, length and limitations of the recovery period, and the probable side effects.
For me, being laid up for weeks, or a treatment that lasted weeks, was not attractive. Also, the risk of incontinence and erectile dysfunction were not something I wanted to experience. So, the best choice for me was the high-dose rate brachytherapy, which involves placing temporary (instead of permanent) radiation seeds on the prostate, during several sessions.
I had 2 sessions of this type of brachytherapy 2 weeks apart, accompanied by a sore bottom and urinary burning for a few days. I also had urinary urgency for a few weeks, but all those symptoms passed quickly. I chose this treatment because of its effectiveness, convenience, and the great relationship I had with my radiation oncologist.
My PSA is monitored every 6 months, and has declined steadily, from 5.7 to 0.3 ng/mL in the last 3 readings, indicating no sign of cancer, which took nearly 3 years to reach.
I stay active in the prostate cancer support world, and continue to study prostate cancer. I find learning soothing. I am most grateful to my doctors, medical professionals, my wife, my family, and friends for all their support. It’s been 4.5 years since my treatment. Being a technically oriented guy, learning the medical aspects of my journey was not too difficult. But I was not prepared for the emotional roller coaster!
Emotion Driven by Fear
Emotions driven by fear may be the hardest to deal with, because fear is often irrational. By contrast, the first time I saw something threatening through a periscope, I could take action to mitigate the risk. With cancer, my fear at times was pure fright, which can stymie you. I knew very little about the disease, including what the prostate was.
At times, a profound loneliness overcame me. Sure, my loving wife and friends tried to support me, but when you wake up in the middle of the night and thoughts about cancer start spinning in your head, there appears to be no outlet for those thoughts and emotions.
The tools I used to put the pieces of my life together included mental, physical, and emotional/spiritual. I needed to know all I could about this disease and the available treatments. I dove into prostate cancer books, attended a conference for patients with prostate cancer, and joined support groups and online forums. I researched scholarly articles and read about prostate cancer clinical trials and statistics. One shocking realization was how much I didn’t know. Learning was a great help; it is a cognitive function that helps me balance the emotional side.
I also needed to pay attention to my body, my physical self. I have been active my entire life, and after my diagnosis, strenuous exercise helped me feel good—I was fighting back. I also made some adjustments to my diet.
Cycling and Quilting
One new thing was, I started cycling. A fellow prostate cancer warrior was an avid cycler and convinced me to join in a fundraiser for prostate cancer at a local hospital. I rode 65 miles to raise awareness and money for cancer research. I trained for months riding the hills of Connecticut. I took fellow prostate cancer warriors on the ride with me. These physical activities were great for my body and for my spirit.
My emotional or spiritual journey was the most critical shift from being a patient with cancer to a cancer thriver. I have discovered that writing and offering service to other patients is very therapeutic.
I also started making quilts on a 105-year-old Singer treadle sewing machine. I have made 15 quilts and sent them to friends I have met who have prostate cancer. I send a long note with each quilt, explaining its meaning for me as a cancer warrior, noting that “This quilt represents the entire support system patients with prostate cancer have during their journey.”
I try to post inspirational messages on prostate cancer social media sites, and I facilitate a weekly support group for prostate cancer warriors. This group is an emotional and spiritual uplift and includes about 30 guys and a few wives. We are able to share information, cry and laugh, and just be there for each other. And I reach out to guys throughout the week to see how they are, and I am pretty sure I get more than I give.