For the last few years, I’ve been taking care of my self pretty well: I eat healthy, exercise regularly, and try to get enough sleep, despite both my night owl/early-morning-writer habits. I do these things in no small part because I feel they contribute to my health, but also decrease my chances of getting cancer. Both of my parents have had brushes with cancer. Something that a friend is going through this week has made me think a little bit more about my parent’s experience, and I realized I didn’t know, I didn’t really know what they went through. So I decided to ask them.

I reached out to them cautiously, almost timidly: I had no idea how either of them would react to their son probing a delicate subject like battling cancer, or even having a close call with it, for writing he intended to share publicly (full disclosure: both of my parents had complete access to all drafts of this piece, and also retained full “veto power” in case they changed their minds).  My friends and family know that I live my life transparently. It’s not a huge philosophical choice, it’s just how I feel. Yes, there are things that I tell only very few people, but in general, I haven’t really gained anything by keeping secrets. But I wasn’t prepared for how open and eager they were to share their challenges, their fears, and their courage.

My dad, Jim Schneider, didn’t have any symptoms before he was diagnosed with prostate cancer in April of 1990. It was his friend, the artist Bob Hooten, who tried to persuade him to go in to the doctor. Bob had prostate cancer, and brought it up in conversation with my father one day. My dad was 48 at the time, and was considered a relatively young, but still possible candidate to have this type of cancer. Although only 1 in 10,000 under age 40 will be diagnosed with prostate cancer, the rate shoots up to 1 in 39 for ages 40 to 59, and 1 in 14 for ages 60 to 69. And because I have a direct relative who has had it, my odds are twice that of my father. In any case, Bob persisted, and then enrolled my mother, who was particularly insistent.

My father relented and went in to the doctor. They conducted two types of tests: a physical examination, and then a blood test. Back then results were slow in coming, and my father had to wait two whole weeks for the outcome! He remembers having no apprehension whatsoever during those two weeks, since he had no symptoms, and got the expected call to come in to the office for the results.

His doctor, Dr. G***, entered the room. My dad remembers comparing him to Doogie Howser, since he looked to Jim like he was 18. He ruffled some papers on his clipboard, and then announced without preamble, “Well, it looks like you have the Big C.” Almost immediately a nurse interrupted, and told the doctor there was an emergency down the hall. He exited the room without even excusing himself, and left my dad there, shellshocked with the news, and the flip way it was delivered. My dad doesn’t use 4-letter words often, but “Oh shit, I have cancer” was his mantra for the minutes after the doctor’s proclamation, minutes that must have felt like hours.

After a few minutes the doctor came back in and went over treatment options. Jim could have chosen radiation, which back then was more risky and less precise than modern radiation therapy…it also had the side effect of rendering the cancer inoperable surgically if it returned. My father chose surgery instead, which the doctor supported. Dr. G*** insisted he had a 90% chance of full recovery with the surgery, reassured him that he had done multiple operations of this type, and that my dad didn’t have anything to worry about.

Dr. G*** was wrong, and ended up cutting a vital nerve during surgery, which led to lifelong consequences for my father. In addition to this, the doctor went on vacation after the surgery, neglecting to monitor the catheter my father had, and turning a two-day catheterization into a week-and-a-half long painful ordeal for Jim.

I saw red when my dad told me this. I didn’t know much of this before, and though it seems he handled it with his typical good humor and grace, I feel like I would have had a much different reaction than him.

The rest of his recovery was as expected, but the surgery was the beginning of an eventful and painful slope for my family. Within a year, I would graduate and move out (and tell my family I was gay), my brother and my grandmother would pass away, and my parents would divorce. It was then that my father started feeling like he was not in control of his own life, and found faith in God. His current attitude, that “there are always worse things that could happen to you”, is one of absolute gratitude for what he does have.

My father has had no reappearance of the cancer, although in the last few months his PSA (Prostate-Specific Antigen) tests have come back with very slightly elevated results, but still well below an alarming threshold. He is optimistic. So am I.

My mom, Maria Chavez-Rocco, was 37 when she finally found the source of her chronic fatigue. For 8 whole years she had been battling low energy levels, and had gone to doctors at least twice a year to try to find the source. One doctor even told her, “Maybe you need to start leaving the bed unmade in the morning and relax a little bit”, as a solution to her weariness. My mother knew something was wrong; she listened to her body and knew there was an external source for her fatigue. This 8-year-search for answers led to an eventual skepticism of doctors.

She finally got a referral to an endocrinologist, and that made all the difference. He did a thorough blood workup, that revealed levels of a certain protein, prolactin, were elevated ten times their normal levels. Needless to say, he was alarmed, and ordered an MRI. The MRI revealed a pituitary tumor.

My mom remembers reacting calmly to this news, crediting her dysfunctional family environment growing up for the level of denial she experienced at the bad news. “Everything’s fine” was the answer to all questions during her childhood.

Her self-awareness at this point in the interview awed me. I also was unaware until now that it was, specifically, a pituitary tumor. This struck me as a profound coincidence, since I have been inspired by MRI films of a patient with the same condition. This anonymous person’s victory against the same condition has generated a few pieces of my art, as detailed in this previous post.

The endocrinologist collaborated with a neurologist to perform a CAT scan, which revealed a concerning level of detail: had the tumor been even a couple of millimeters in another direction, it would have pressed upon her optic nerve and possibly blinded her for life.

They told her it was slow-growing, and that it was probably benign, as most pituitary tumors are, but there was also a very real possibility it was malignant. The language shifted after the neurologist got involved, and they started discussing oncologists and using the word “precancerous”. There was also a possibility that she would not survive the surgery. This was, as my mom recalled, laughing, her “Oh fuck” moment, to use another four-letter word. So my mom took her time, scheduled surgery for a full two months later, and set about preparing for the end of her life.

She remembers cleaning. A lot. She organized closets and drawers, not wanting anyone to find an unkempt house if she passed away. She had a newfound interest in religion and religious songs…the song “Just A Closer Walk With Thee” can still snap her back to that time in a heartbeat. She planned the playlist for her funeral, sitting in the living room and playing LP after LP, cassette after cassette of Jose Alfredo Jimenez’s prolific ranchera mariachi catalog. And last of all, right before the surgery, she had a “Going Away” party, where people came out of the woodwork of her life to pay their respects.

In the meantime, more symptoms manifested, including spontaneous lactation, which is a common occurrence among women who have these types of tumors.

Maria also remembered realizing that people were afraid to mention it, to talk about it. This frustrated her, since to her, “if you talk things out they seem less frightening.” She also recalled wanting people to even plainly say “If you die, I’m going to miss you,” to somehow be a validation of what she meant to people. But people still would avoid the subject.

In the pre-op room, she remembered shaking with fear for the first time in her life. She had just assumed that was a literary device, a nice turn of phrase that authors used. She knew what was about to happen, from the meeting she had with her doctor, her neurosurgeon, and the reconstructive surgeon assigned to her. “Pretend we’re holding your upper lip. Now pull it over your head. We’re basically taking your face off,” she remembers Dr. Hankenson saying. Her tumor was in the center of her brain, and at the time the typical surgery was to raise the skin of her face, break her nose, and go into the brain through the nasal cavity. Maria took a deep breath of the anesthesia, and went under.

About two days later she regained full consciousness. At the time one could smoke in hospitals (!), so she had someone carve a hole in the large bandage covering her massively bruised face so she could smoke. And shortly after she woke up, she was told the great news about the tumor: it was benign.

This experience shook her to the core, this brush with death. She credits the experience with the ease with which she has dealt with mortality and death on a very personal level. She was the Deputy Director for the New Mexico Association of People Living with AIDS from ’92 to ’93, and was with many people, many friends, as they died. She was also with her mother, and her husband Richard, at the moments of their passing. It led her to the epiphany that nothing matters more than family, and the powerful relationships you forge with people in your life. Not money. Not jobs. Just the people who you love, and who love you.

She has never had any complications from the surgery. However, on the very day that I am typing this, she went in for a biopsy on a patch of skin on her ear that concerned her and her doctor. She has had skin described as “precancerous” removed from her body in the distant past. We receive the results on the 24th of this month. But again, I am optimistic.

For my part, I’m healthy and take care of myself, but I’m also on the alert and always listening to what my body is telling me. I can’t imagine going through what either of my parents went through with half of the grace and courage they had. Their bravery, and the bravery that most cancer fighters seem to find within themselves, is inspirational. But I think the biggest lesson I took away was the four-letter word neither of them ever uttered out loud during the interviews, but was ever-present in the accounts they told. It wove itself into their stories beneath even their darkest times, and clearly was a touchstone for both of them.

That four-letter word was hope. And that is always the most powerful weapon in the arsenal, a more potent drug than anything in the multiple amber bottles that were in their medicine cabinets. There is no shame in optimism. There are no rules against anticipating a positive outcome. Hope is the ultimate renewable resource. Hope doesn’t care about the odds of recovery. Have hope.