Imerman Angels: Free Cancer Support Wherever You Are

By on October 23rd, 2014 Categories: The Breast Cancer Journey

The pain was sudden and excruciating. Jonny Imerman, 26, doubled over and dropped his pool cue. He managed to leave the Ann Arbor, Michigan bar that Saturday night in 2001 and get to an emergency room, where he was diagnosed as having an infection in his left testicle. This would soon turn out to be an incorrect diagnosis.

Imerman worked in commercial real estate and was going to school for his MBA at night, but his life was about to change. After seeing a specialist, Imerman learned that he had an aggressive testicular cancer known as choriocarcinoma. Doctors removed his left testicle and discovered that the cancer had spread to his abdomen, almost reaching the lung.

He soon began chemotherapy treatments in 3-week cycles: Blenoxane (chemical name: bleomycin), Vepesid (chemical name: etoposide), and Platinol (chemical name: cisplatin) infusions for 8 hours a day, 5 days a week, followed by two more once-a-week treatments. He experienced side effects such as skin rashes, mouth and throat sores, cystic acne, hair loss, extreme fatigue, neuropathy, partial hearing loss, and a blood clot around the chemo port in his arm. He gained 40 pounds. Low blood counts caused delays, and chemotherapy lasted a total of 5 months.

After treatment ended, Imerman slowly returned to being social and going to the gym, but he struggled to regain his former energy levels. “There were days I’d just cry because 3–4 months after the cancer, I’d go to the gym and be so tired. I’d always worked out before the diagnosis. At about 6 months it finally started to come back. It took almost 2 years before I was back lifting weights and playing basketball.”

By the time Imerman was 28, a year and a half after his original diagnosis, a follow-up CT scan found four tumors next to his spine. Doctors removed them through an 11-inch incision. During his recovery, he was surrounded by family and friends, but he noticed other patients dealing with cancer alone in their hospital rooms. So he started visiting them. He asked them about the type of cancer they had, what kinds of side effects they experienced, and they shared their mutual fears and concerns. Realizing that patients needed to talk with someone in their age range who’d been through their diagnosis, he wrote down survivor friends’ names and numbers to start a database that would later become the mainstay of his nonprofit organization, Imerman Angels, a free matching service for anyone seeking cancer support. Through Imerman Angels, people diagnosed with cancer can be matched with a “Mentor Angel” — a volunteer who’s the same age, same gender, and who’s had the same diagnosis. Likewise, caregivers can be matched with caregiver mentors — people who’ve cared for someone of the same age, gender, and diagnosis as the person requesting a mentor.

Today, Imerman is 39 and cancer-free. Since 2006, he’s been running Imerman Angels from its Chicago office with an active Medical Advisory Board and Board of Directors. Funding is largely from donations as well as Team Imerman Angels events with the Chicago Marathon.

Matches have been made worldwide, often using Skype to connect. “We matched someone in London with someone in Vancouver, for instance. On that person’s first day of chemo, she had her laptop and her Mentor Angel was right there with her on Skype from across the ocean, talking her through it.”

Since its inception, Imerman Angels has made 10,000 patient and caregiver matches. There are currently 6,000 Mentor Angels in 65 countries, including Angels in every U.S. state. Two thousand of these matches have been breast cancer patients. Today, there are 1,165 active breast cancer Mentor Angels.

One of them is Susan F., the woman behind the Uppity Cancer Patient blog. Susan, who lives in Washington, D.C., was diagnosed with stage IV HER2-positive breast cancer in January 2012. “It was stage IV upon first diagnosis. I had an, ‘Oh crap, I’m gonna die’ moment. Within 10 minutes of diagnosis I found the Discussion Boards on Breastcancer.org.” She started a regimen of 5 months of weekly Taxol and Herceptin. “It was horrible,” she says. “The steroids keep you up all night sometimes, so I was on the Discussion Boards a lot, and it’s great because you get responses so quickly! I also found www.Sharsheret.org, and they’ve been great. I’m sort of like a beta tester for breast cancer support,” she laughs. “I decided to reach out to everyone I could.”

Within 2 months of diagnosis, Susan found Imerman Angels online and was matched with an Angel — Nancy, another stage IV woman a few states away. They’ve talked on the phone every week ever since. “I’d contacted a lot of other organizations; I just needed to keep myself going in terms of hope. I needed to talk to people who were going through the same thing and were still living with a decent quality of life. With some other matching services, you’d have a one-time contact. With Imerman Angels, it’s kind of like Big Brothers Big Sisters. I needed that more lasting support. So for me, it gave me hope and support and someone who’s been willing to be there with me as I’m going through this.” She and Nancy would talk frequently as Susan was going through chemo. “And now when I go in for scans, I tell her about it, and when she goes, she tells me. We eventually met in person and went to see a Broadway show in New York — it turned out we had the same taste in plays! It was a lot of fun; we saw Cabaret.”

Now, Susan serves as a volunteer Mentor Angel herself. “I’ve talked to two people so far. My goal when I first talk to them is to reassure them that there are people who are still living with stage IV breast cancer and that you just have to push for good medical care, and pray. I encourage people to be assertive in their medical care.”

Imerman Angels encourages Mentor Angels to provide support, but they make clear that for medical advice, patients should always speak to their physicians. As part of the mentor screening process, Mentor Angels sign a contract stating they will not give medical advice to patients. Screening for potential mentors also includes a comprehensive online questionnaire and phone interviews with Imerman staff, as well as a mentor manual created by physicians, nurses, and social workers on their Medical Advisory Board.

Gina Nolan, a high school teacher who lives outside of Chicago, was diagnosed with triple-negative breast cancer in 2010. She underwent bilateral mastectomy, reconstruction, and 4 months of chemotherapy. “I was sitting in the waiting room for a CAT scan,” Nolan says, “and a man told me I should hook up with Imerman Angels. So I filled out the application on a Friday, and by Monday afternoon, they had a match for me.”

Her Mentor Angel, Mary, lives near Milwaukee, WI and is also a triple-negative survivor. “There is nothing like talking to a person who has gone through it. I would call her with questions during chemo. I was teaching high school and knew I would lose my hair, but still being active and doing things. My mom was my caregiver and she spent the summer and fall with me, and she was worried about me going to a Cubs game. Mary, my Angel, said, ‘You need to live your life, but take precautions; use hand sanitizer.’ It was really good to get that reassurance and to not think I was taking an unwise risk.”

Nolan talked with Mary once a week, especially during chemotherapy. “She’d call and check on me, and we kept in touch beyond the chemo. Since we’re 2 hours apart, we finally met at Christmas break for breakfast. Her son was going through cancer at the same time so it was an amazing show of strength with her, dealing with all this.”

Nolan says, “As much as I trusted my doctors, I felt like they’d only say so much, probably more from the emotional standpoint — the ups and downs I’d be facing. Doctors could talk about physical side effects, but a Mentor Angel could talk about how it affects your life socially.”

Later, she signed up to become a mentor. “The first time I went to a mentor meetup, it was a long way to drive, and I thought, ‘Should I go?’ But I left the meetup so invigorated, because everyone I met was a cancer survivor or a caregiver, and I felt like even though I had a great support system with family and friends, now as a survivor, it was amazing to talk with people and see how their lives had gone on with that connection. There were people who’d had all types of cancer, and there is nothing like having people around who get it. Whether it’s the fear, the doubt, the pain in your side — ‘Oh, maybe I ate something that upset me. No, oh my God, it’s the cancer coming back.’ Just people who’ve gone through those same fears.”

In 2009, LaNae Ramos, from the Quad Cities area of Iowa, was 40 and a mother of three when she was on her way to getting a nursing degree after 5 years of hard work. Three days shy of finishing her training, she was diagnosed with stage IIB breast cancer. She underwent a mastectomy and 6 months of aggressive chemotherapy. Her husband, George, is a police officer. “The hardest thing I had to accept was that I’m so used to being called to do things, and as officers, we take control. They want us to assume control of a situation that is out of control. That’s what we do. And then this happened, and I was lost. It was as though the world was spinning around me, out of control, and I’m in the middle and I can’t move.”

He continues, “And there was one night, I just recall lying on the floor with my daughter because she couldn’t sleep with her mom. I got in a sleeping bag on the floor next to her. Curled up in fetal position, I was thinking, ‘What do I do? I have to be everything for everybody. I’ve got to do something.’ And I just remembered Gilda’s Club. We’d gotten support by going there.”

Ramos says, “They brought Jonny in one day. He talked about Imerman Angels and mentoring, and I thought, ‘This is awesome. If I’d known, I’d have called them and talked with a man who’d been through this.’ When he was talking, I thought, ‘I can help someone else to not have to have those sometimes crappy, lonely days and weeks — maybe this is not for naught.’”

That weekend, he went online and signed up to become a mentor. Although LaNae’s treatment was over, she was still going for follow-up visits. “We were gravitating towards not necessarily needing support but going in the other direction — helping. There are so many other people out there who have already walked their walk, gone through it, faced their obstacles, and they’re on the other side. If I could’ve seen a person already on the other side, that would have helped me get through it a little bit easier. For me to be able to pay it forward — I don’t want any husband to have to feel what I felt. Helpless, lost, but to know, ‘Hey, I can make this call; there are others who’ve been through it.’ A cancer diagnosis for one person is a cancer diagnosis for the entire family and household.”

Ramos now mentors other men whose partners have breast cancer. He says, “Sometimes it’s only a couple of phone calls or emails and they’re good. And I’ll periodically call back or email to see how things are going. Usually it’s to help them get over a hurdle, like an upcoming surgical procedure, or just after one. And then they can go on. And if something else comes up, I’m there,” he says. “I just let them talk until they get it out of their system, and I try not to interrupt them, and then we talk some more. If I’ve helped them get through that day and have some kind of peace and hope, maybe that’s what they needed that day — it makes me feel good because I remember how I felt. I wanted someone to give me hope and there was no one.”

Ramos says, “I made my wife a promise — that she’d never go through this alone. I was going to be there. And so, it’s not been easy, but that’s what I think our vows are for! Take the high road now. Being a police officer for 28 years, I think it’s just kind of helping me to be more sympathetic to people.”

Two years ago, Jonny Imerman, along with the Imerman Angels team, was nominated to be a CNN Hero. He’s a vegan, he abstains from alcohol, and he exercises more than he did before diagnosis. “I feel well, and I meditate every morning and night. I say a prayer of gratitude — for the food, clothing, roof over my head, health insurance, mental clarity, family, friends, my girlfriend. I walk out of my house, and I don’t forget how great my life is.”

How has starting Imerman Angels changed him? “Each person has stories. I just love every single story. In the thousands of people we’ve helped, there’s magic in the match — but it’s also in the power that grows every single day.”

To sign up and receive a Mentor Angel — or to become one — visit www.imermanangels.org. If you’ve been matched with a Mentor Angel or if you’re a Mentor Angel yourself, share your stories with us below!

Claire Nixon, Editorial Director — Claire directs a team of writers, researchers, content managers, and physicians through the creation of high-integrity web content. She brings 20 years of experience in health communications and journalism to the Breastcancer.org team, as well as the lens of the patient – she was treated for breast cancer in 1998 and again in 2012. In her off-time, Claire enjoys creative writing, independent films, meditation, and the ocean.

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