A Caregiver's Perspective

In sickness and in health

Husband and wife continue to battle advanced prostate cancer together

So much for the honeymoon period.

A mother of two young daughters, Debb Harelik met her husband, Leibel, through online dating—right after he was diagnosed with prostate cancer. That’s not so bad, she thought. She’s a nurse, after all, and knew enough about the disease to know the success rate. Leibel proposed not long after they began dating, but as the relationship progressed, so did the cancer.

 

“After going with him to the doctors, I started to realize it was a little more serious than I had thought,” she said.

Since his diagnosis in 2002, there have been biopsies, robotic surgery, hormone therapy, immunotherapy, radiation—all attempting to keep metastatic cancer at bay.

“People would say, ‘Why would you marry someone with cancer when you know they’re going to die so soon?’” Debb said. “And I thought, ‘Who’s to say I’m not going to step off a curb and get hit by a bus?’ Then they would say, ‘Well, what are you teaching your children?’ And I said, ‘I’m teaching my children how to love, and that it doesn’t really matter how long it is.’ And it’s turned out to be much longer than I ever thought possible.”

Even while defying the odds, Debb has served as the primary caregiver for her husband, enduring pessimistic doctors, failed treatments, horrendous side effects and an emotional roller coaster. And just as they began their newlywed life, Leibel was facing the physical and emotional trauma of erectile dysfunction and an annihilated libido.

“In the very beginning, it was a really big hardship emotionally and physically for both of us,” she said. “I think as a wife, it’s very difficult to recognize that even though I know that my husband desires me as woman, it’s difficult to realize that. Even though he may have that thought process like, ‘Wow, she’s really pretty,’ there’s absolutely no motivation in that direction. He kept trying to explain that to me. I was daft and never really got it.”

In fact, it was a couple of years before she finally understood: Sex just wasn’t going to be a part of her life with a man with metastatic, castration-resistant prostate cancer being given massive doses of female hormones. Debb said the change in her husband was dramatic.

“It’s like there’s no desire,” she said. “I think he feels like a failure as a man because he can’t do ‘manly’ things. Men aren’t all about sex, but that’s important. And that’s gone.”

While her nursing background has sometimes made things harder for her (“You know a whole lot but you don’t know enough”), Debb said her profession was also her coping mechanism.

“Nurses have this habit of putting on this really cold shoulder because you have to push things far away. It’s really unfortunate, but I’ve done the same thing with my husband. If something is scary, I turn clinical. It’s preservation for me as a woman; if I detach for just a bit, it’s easier for me to focus on what I’m doing and be able to assist him.”

Other times – the “bad days” – called for a more intimate approach, she said.

“Sometimes we just dance in the house—a little slow dance, a little moment.”

The demands on her time and energy didn’t stop with Leibel.

“I felt like I was being pulled in all different directions,” she said. “I had just met a man I was falling in love with who was becoming a stepfather. He wanted my attention; my children needed my attention. There was not enough of me to go around. I know I didn’t give enough to everybody; I sure didn’t give enough to myself. And if I have any piece of information that’s the most important it’s that the caregiver really needs to take a little time for themselves—without feeling guilty.”

Help for herself was often hard to come by, as others didn’t seem to grasp the gravity of Leibel’s condition. Without “typical” visible signs of cancer, his disease was often dismissed.

“Friends and family don’t get it,” she said. “I’m not saying prostate cancer is worse than other cancers, but most other cancers don’t involve hormones. I think the hardest thing about prostate cancer is that they don’t look bad. You can’t tell that something’s different. You don’t know that their brain has totally changed because the amount of hormones they’re on.”

For those rare moments she’s able to get away, Debb’s one escape is to the pool, where she cherishes the time to herself.

“That’s my one quiet place.”

Together, the two have leaned on each other over the years, advocating for prostate cancer research at both the state and federal level, even teaching others the power of laughter through the Association for Applied and Therapeutic Humor and becoming certified laughter leaders through the World Laughter Tour. It’s a technique that’s definitely worked for them.

“We had to develop our intimacy more mentally and more through playfulness: laughter, joking around, just being goofballs,” she said. “We find our moment and still find our laughter.”

For now, Leibel continues to defy the odds – Debb calls him a “walking miracle”– and his wife stays hopeful.

“We cope the very best way we can.”

Click here to read Leibel's story.

 

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