Breast cancer survivor stories are everywhere (fortunately!), and they are worth telling because they are both inspirational and motivational:
She survived. Maybe I can!
A mammogram detected her cancer. I’m making an appointment right now!
But there is another “survivor” worth celebrating as well. The patient’s partner.
The patient must deal with a whole lot more than cancer. Each and every step along the way – diagnosis, decision-making, treatment and aftermath – can be overwhelming. Just the logistics of adding “fight cancer” to an already crazy to-do list would stymie a four-star general. Who can you rely on? The partner.
Many patients report gratitude for their “village,” the friends and family, even people they barely know, who come out of the woodwork to lend a hand. But who is the police chief of that village? The partner.
Stephanie Fowler and Irving Levin
Stephanie Fowler admits that she was not one for regular checkups. She and her husband, Irving Levin, did a lot of traveling. And it just wasn’t her thing. But last December, fresh from a trip to Africa, she did have an appointment with a new provider. And he found a lump in her breast. The adventure, she says, proceeded from there.
“I always knew in my heart that I had it coming. My mother had two different breast cancers. I’d had false alarms. So I was upset, of course, but resigned. ‘Hello, Cancer. I’ve been expecting you.’ ” Stephanie is a thorough researcher by nature, and she knew what she had to do. “I charged ahead.”
Her husband charged right with her. “I was amazed at the speed at which we fell down the rabbit hole,” Irving remembers. “How fast this new reality set in about what Stephanie had, what the treatments would be like and what the prospects were going forward … it was dizzying for both of us. We found out she had cancer in early January. She had her first chemo a month later. In that interval, the amount of research that we did and the amount of information that we took in was astounding. It was like drinking from a fire hose.”
“Stephanie’s mother says that I’m good at looming. I was just there. I was the second set of ears and eyes. She’d read something, I’d read something and we’d compare notes. My thinking always was ‘How is Stephanie feeling about this?’ ”
Stephanie is now about halfway through her treatment. She has had her surgery and a pCR (a test showing there is no residual evidence of cancer.) She reports for a chemo infusion every three weeks. It is, ironically, the worst time for her and the best time for Irving.
“Once I had my surgery, which went well, I think he thought ‘She’s all better! Now we can do everything again!’ But I wasn’t better. I still have the aftereffects of surgery, and I keep getting new side effects with the chemo. Then you feel worse because you’re not happy and thrilled and everybody expects you to be.”
“That’s absolutely true,” Irving agrees. “I felt immense relief because I knew she’d beaten the disease. I underestimated the time it would take her to recover and do again what we’d done before. It didn’t take me long to realize that I was all wet about all that.
“It really makes me appreciate that time is the real currency here,” he adds. “You want to fill it up with things that are meaningful. What are your priorities with this new understanding of how precious time is? What do you really want to do?”
They plan to resume their travels when Stephanie actually is recovered, but perhaps not in the same way. “Maybe,” Irving says, “we’ll spend time in easier places.”
Advice from Stephanie and Irving
1. Learn as much as you can. 2. Ask directly what it is the patient needs. Do you want me to go to appointments? Are you happy with the way things
are? 3. If you’re not lucky enough to have a partner, take advantage of the myriad programs that will provide a partner to help you.
Irving had an advantage compared to many others in the same position: he does not, he says, have to “punch a time clock.”
Stephanie, though, says it was hard for Irving. “He’s a pleaser and a problem solver, and this is one he can’t solve. A great frustration.” He agrees.
When Julie and Will Roth showed up at the admissions desk for a mastectomy, the check-in nurse looked at Julie and asked, “Mrs. Roth, do you know why you’re here?”
“Yes,” Julie replied. “I’m here to support my husband. He’s the one having the mastectomy.”
Will went to a dermatologist in 2006 for a little spot on his nose (benign!), and when the doctor asked if he had any other spots to show her, he remembered a little something on his chest. What followed were tests and biopsies, lots of them, all inconclusive. Something was there, but the doctors had no idea what it was. Finally they decided it had to be removed, whatever it was. They performed a mastectomy, which is when they discovered it was invasive breast cancer.
“The doctor was shocked that it was cancer,” Julie remembers. Would cancer have been on the list of suspected diagnoses had the patient been a woman? After all, fewer than 2% of breast cancer cases are men. Julie and Will don’t know for sure, but they cite anecdotes and examples, some slight but some disconcerting, that point to some alarming gender bias in the care of breast cancer in men.
Will’s doctors did jump right on the cancer once they figured out what it was. Julie and Will, like Stephanie and Irving, remember everything happening very fast.
“I went on autopilot,” Julie says. “They whipped him into that first surgery, and he came home that day with tubes coming out of his chest. They said, ‘You have to take care of him.’ All I could say was, ‘Here we go!’ ”
There was a little snag in Julie’s plans to be the caregiver, however. She’d had a hysterectomy just a few weeks earlier. She couldn’t lift anything. She couldn’t drive. She needed a lot of help from friends and family. Still, she was there for him.
“Julie was fearless dealing with the personal, physical things I was going through,” marvels Will. “It made a world of difference to me that she was there.”
It was different and difficult being a woman caregiver in a culture that expects that role to be filled by a man.
In an interesting twist that is amusing, finally, eight years later, Will’s type of cancer meant his treatment plan was tamoxifen pills for five years. The drug inhibits the body’s estrogen, and the side effects are much, much different from those associated with chemo. He went, for all intents and purposes, into menopause. Night sweats. Mood swings. Hot flashes. Just like Julie was going through post-hysterectomy. His was worse. Today Will is a breast cancer activist with a website and a blog at WillRoth.com. He writes and speaks to promote early detection, and he spoke about the BRCA gene mutation at the symposium “Your Jewish Genes and Cancer” last April at the Mittleman Jewish Community Center. He is an advocate for gender-neutral treatment of cancer patients and is partnering with Breast Cancer Brothers to produce a PSA to be aired nationally this fall. He and Julie leave soon for Australia, invited by YapStuff, an organization that addresses breast cancer gender free, to speak to Parliament and health officials. And he is, at press time, the #7 Fundraiser for Race for the Cure Portland.
“I want him to be #1,” Julie declares, “as justification for all the gender bias he’s had to deal with.”
Advice From Julie and Will
1. Get advice. Ask questions. Do research. Your spouse will be in shock and may not know who to ask, what to ask. You can do that.
2. Everybody gets burned out. Ask for help. You’re going to need it.
3. Mothers tell me they are worried about their daughters. I say, “Worry about your sons, too. Everybody has breast tissue.”
Liz Rabiner Lippoff is a medical marketing consultant and freelance writer. LizInk.biz