Piece by piece: People with cancer create a compelling portrait of hope
“You can’t beat an old dog,” says Roger Thorne, a retired farmer, about his cancer. Or, rather, cancers. In 1980, Roger went to the doctor with symptoms of his recurring diverticulitis. He left with a much more serious diagnosis: chronic lymphocytic leukaemia (CLL). “I was very worried about it,” he explains,
In other words, this type of chronic blood cancer is not a death sentence.
This has proven to be true. Even with leukaemia, Roger, the eldest of eleven children, has outlived five of his brothers and a sister.
Roger requires no medication for his CLL and goes regularly to the doctor for monitoring, generally on a yearly basis, although more when the illness flares up. “It can just be there, and if you’re under stress, like when I had my heart valve replacement, that’s when the blood count goes haywire.”
During a routine check-up about eight years ago, Roger’s doctor discovered prostate cancer. Since he lives in a rural area of southern Ontario in Canada, he was sent to a treatment centre about three hours away for six weeks. There, he underwent hormone therapy and 34 radiation treatments while becoming part of a community of cancer patients, with whom he is still in contact. “In fact, I talked to a lady just a couple of weeks ago. She’s doing fine. She’s a breast cancer survivor.”
He was monitored for prostate-specific antigen (PSA) twice a year for the next five years by doctors who travelled monthly to the area. His prostate cancer is now in remission.
“Stress is one of the biggest issues, I believe, in any sickness […] I decided I wasn’t going to worry and live my life and if it was cut short, then it was cut short. I wasn’t going to go around and cry about it.”
Roger survived major heart surgery and prostate cancer and is living with leukaemia. He says he feels very fortunate: “I’ve done pretty well. I’ll be 82 in three weeks, and I think I’ll be around for a couple more.
Linda Vogel was diagnosed with ER+ breast cancer 22 years ago. For the better part of two decades, she blamed herself that it had not been detected earlier.
She’d been having regular mammograms in her 40s and early 50s. At one point, she was told to return six months later. There was miscommunication somewhere along the line; Linda hadn’t understood that meant the doctors might have spotted something. Life intervened and it was two years before she went for the next mammogram. By then, it was Stage IIIB breast cancer. “Cancer strikes you out of the blue. I didn’t have time for it. I was a mother, wife, had a career,” she explains.
Linda was given a 30% chance of surviving beyond five years. “I was self-deprecating, self-critical, felt it was my fault. I’d been negligent.” She was ashamed of her naivety in thinking it only ran in families. It led to dark times, and Linda suffered periods of major depression. When she had to wait for test results, for example, she would stay in bed for days, convinced the cancer had spread.
It was a confusing time. With 15 lymph nodes testing positive and a possible mass on her liver, all indications pointed to a negative outcome. After a year of the most aggressive treatments available—a bone marrow transplant with high-dose chemotherapy after six months of standard chemo, and all that followed by radiation—Linda still lived in fear of metastasis. The mass, however, turned out not be a tumour. “And yet,” Linda remembers,
Joining a support group with a “wonderful” facilitator who taught her techniques for dealing with anxiety helped give Linda a new perspective. Breast cancer is the result of a host of factors, most of which you can do nothing about. Survival was often the “luck of the draw.” Linda realised self-blame put her at risk of squandering whatever time she had left, so she chose to be grateful to be alive. “It’s a good thing I did that, because I would have wasted 22 years.”
Connecting with other patients and being there for each other took much of the fear out of cancer, even when it meant “helping women take that last journey,” which was “an honour” for Linda. She is still actively participating in her support group, which she describes as more of a “sisterhood.” Her presence offers hope to the other patients, especially those with severe diagnoses. She is living proof that you can come back from even the most advanced cases. “I feel I am giving back in a way, making a contribution.”
Now in her 70s, vivacious Linda enjoys every minute. She started piano lessons five years ago. She goes three times a week to exercise classes, belongs to two book clubs and is busy with her friends and two grown daughters. “I can say there’s life after cancer. And I stopped blaming myself for not getting that mammogram. It is healthier to look forward to the future instead of agonising about the past.”
Back pain? Oh, it’s probably just muscular. Or maybe it’s stress-related. These were the thoughts that went through Jeff Julian’s mind in the middle of 2014. As a swimming coach at Rose Bowl Aquatics and the University of Southern California, he knew that aches and pains sometimes come with life as a high-performing athlete.
But the pain got worse. In January 2015, after watching Jeff sit visibly uncomfortable through a restaurant dinner, his wife Kristine convinced him to see a doctor. At the hospital, an x-ray revealed a lump in Jeff’s lung. A needle biopsy followed and three days after his first doctor visit, Jeff received the diagnosis: lung cancer.
“Life became a process of trying to figure out what was really going on,” Jeff recalls. “I had a brain scan and a full-body PET scan. The brain scan was clear but the PET scan didn’t bring good news.”
Not only did Jeff have non-small cell lung cancer, he had stage IV disease with cancer identified in more than 25 places in his body. The doctors told him he had about six months to a year left to live.
Although Jeff considers himself an introvert, he decided to go public with his diagnosis. After breaking the news to his son Trenton, he announced his cancer on Facebook. He believes this is the right path for cancer patients to take. “You never know where support will come from,” Jeff says.
One of the biggest challenges was finding doctors who would consider options beyond the standard of care – in Jeff’s case, chemotherapy. Doctors looked at Jeff and saw a man with a death sentence over his head. Despite their resistance, Jeff had his genomic profile done and armed with those results, was able to join a clinical trial involving treatment with two immunotherapy drugs.
Throughout his treatment, Kristine served as coach, advisor and main caregiver, ensuring he ate well and got enough rest. Team Jeff also included his sister Jaimi.
The first week of the clinical trial was tough. The cancer seemed to be battling against the drugs, with all Jeff’s painful symptoms intensifying. But then, things changed. The night sweats disappeared. He had less pain. With each passing week, he felt better.
The 12-week scan showed why – his measurable cancer had been cut in half. As the trial progressed, the good news kept coming. Jeff’s cancer diminished by more than 90%.
“I went from someone who had cancer all over his body to someone who has three little nodules in his lungs that might not even be cancer, just calcifications,” Jeff says.
Jeff’s focus has shifted from fighting disease to enjoying life. Like everyone else, his life has the usual ups and downs, but whenever they happen he thinks about what a privilege it is simply to be alive and feeling well.
“To everyone with cancer, I want to tell you, don’t give up hope,” Jeff says. “Hope is never a bad thing. Hope is our ally, our friend, and the belief that something better can come tomorrow.”
While taking a financial exam, Jason Mendelsohn rested his head on his hand to think. The 44-year-old felt a strange lump on his neck. When he called the ear, nose and throat doctor, the response was that it was probably nothing and, since he doesn’t smoke or drink excessively, he wouldn’t need to make an appointment for a couple of weeks. Jason answered, “I’ll be there Monday.” Jason had never felt stronger in his life, and he had no other symptoms, but that’s who he is—a “guy who goes to the doctor.”
It was a good thing he didn’t wait. After a ten-day antibiotic cycle with no improvements to the mass on his neck, further testing was necessary. “Thursday I had a CT scan, Friday a needle biopsy. Monday I found out I had stage IV squamous cell carcinoma.” The father of three was shaken with disbelief: “All of a sudden I go from being a guy working 50–70 hours a week and at every single kids’ event, fully involved, to having a radical tonsillectomy, neck dissection, seven weeks of chemo, radiation and a feeding tube.”
The cancer was caused by a high-risk strain of human papillomavirus (HPV), the world’s most common sexually transmitted infection (STI). The immune system is usually able to fight the virus off, but sometimes, as in Jason’s case, a high-risk strain lingers and, after 10–30 asymptomatic years, the persistent infection turns into cancer.
Because HPV is responsible for 99% of all cervical cancers, however, many people associate its dangers only with women. Jason has made it his mission to challenge this misconception. Men can also develop cancers from HPV.
Going public to make the issue known, though, has sometimes left him vulnerable. When he first set up his website and fundraising activities, a friend of his wife of 22 years asked:
With a chuckle, Jason explains, “She wasn’t being mean—it’s just that I’d be publicly admitting I had an STI. But three out of four adults will get HPV. Why should I be embarrassed?”
As with all cancers, early detection is key. Sadly, when there’s a stigma attached to how you got that cancer, some men may fear testing. He counsels: “Having contracted the virus is not a sign of bad character and doesn’t mean a man cheated on his wife. It’s not only risky sexual behaviour that leads to infection.”
When he was first diagnosed, Jason hadn’t known that men could get cancer from HPV and he couldn’t imagine what to expect from treatment. He also had trouble finding any information on his illness.
Jason learned that a client of his had had tongue cancer six years earlier. She was the only one who understood his particular physical and emotional pain: “Every day she would text me and say ‘only three more weeks…’ Being reminded it was temporary was what got me through.” As soon as he was healthy again, Jason discovered he wanted to be that person for others.
“Jason called me from his office,” remarks Julie Beckhoff, a caregiver who reached out to him for advice. “He was working but he gave up time for me during his day.” Julie had been flying back and forth out of state to care for her friend Jay during his oral cancer treatment. She continues: “Speaking to Jason and knowing he had gone through this experience and come out on the other side made me think, ‘If Jason could do this, Jay can do this. We can do this.’”
Jason serves on the Executive Board of the Head and Neck Cancer Alliance, raising awareness of prevention, screening and treatment options. Despite scientific advancements, the renowned doctors and researchers Jason was working with kept giving him the same message: “The patients feel alone.” He had felt that way, too, and Jason realised that being able to support people on a grander scale is “the one piece that’s missing” in oral cancer care.
Jason has begun building an international patient–survivor–caregiver network to comfort patients through weeks of third-degree throat burns, severe dehydration and constant choking. His goal is that this network of volunteers will help patients worldwide with knowledge, kindness and encouragement.
For the moment, however, he provides inspiration and information for up to 20 patients a month on his own. When asked how he has time to help so many strangers, Jason shrugs modestly: “If anyone wants to talk to me, I give them my phone number and email address. If they text me, I text them back.”
Like many women, Bobbi Johnson counts the day her daughter was born in 2013 as one of the happiest of her life – even though the birth was complicated and ultimately required an emergency caesarean delivery (c-section).
That happiness, however, swiftly turned to shock and disbelief. Due to the complications of the birth, Bobbi underwent a brain scan; the technologist accidentally included Bobbi’s lungs in the scan. Doctors saw a spot on her lung and ordered a biopsy. Just days after giving birth to Katherine Grace, Bobbi received the shattering diagnosis: Stage IIIb Non-Small Cell Lung Cancer (NSCLC) adenocarcinoma.
“I had no symptoms,” Bobbi recalls. “I felt healthy as an ox. I’d never smoked. Nobody in my family smoked. And right up until the delivery, I’d had a great pregnancy.”
Over the next several months, Bobbi combined new motherhood with gruelling cancer treatments, including radiation therapy, aggressive chemotherapy followed by surgery and another round of chemotherapy. The rough ride through cancer treatment paid off, however, with 18 months of remission.
But in the summer of 2015, the cancer came back, spreading to Bobbi’s other lung, her brain and a kidney. With conventional treatment options narrowing, Bobbi turned to genomic sequencing for a clearer picture of her cancer’s mutations. She learned her high levels of PD-L1 made her eligible for an immunotherapy trial.
“These new treatments gave me a good run, but by 2017, the cancer was spreading again,” Bobbi says. Further testing revealed she had a rare mutation known as EGFR exon 20 insertion. At a lung cancer summit, Bobbi found out about a clinical trial for this mutation combining immunotherapy and targeted therapy. She was accepted into the trial and has been on its regimen for almost 10 months.
“So far, so good,” she says. “I’ve experienced the tremendous value of genomic testing and identifying biomarkers as early as possible.”
She also values the support she has received from her family and friends throughout. She thanks them for their help with caring for her daughter and for just “keeping my head above water.”
But Bobbi is fighting more than her disease. She’s also fighting the all too common stigma about lung cancer, that it’s a smokers’ problem and results from poor lifestyle choices.
“More than half of new lung cancer patients are people who’ve never smoked,” she notes. “I think this stigma is a main reason why lung cancer research is woefully underfunded, despite being the leading cancer killer. That’s why I decided to go public.
Bobbi adds: “I also want to tell other people on this path, don’t let cancer devour your spirit. Keep a positive attitude. Connect with people both in person and on social media. Your diagnosis is not your prognosis.”
Shortly before his fifth birthday, Fabio Keller was diagnosed with acute lymphoblastic leukaemia (ALL). Now 14 years old—a healthy eighth-grader, competitive swimmer, avid skier and piano player— he hardly remembers the time spent in the children’s hospital. With a chuckle, Fabio’s dad reminds him of zipping up and down the hospital hallway on a red toy car, yanking an infusion stand behind him.
“I remember that I had a lot of blisters in my mouth from the chemo and ‘had’ to eat a lot of ice cream,” he smiles. “I didn’t find it that bad. I was just in the hospital because I was sick . . . I didn’t like it when I needed an infusion—that was the worst part for me—but while I was sick, I was never scared.”
His leukaemia, however, hit the rest of the family pretty hard. His parents remember much more clearly the agonising side effects of chemotherapy, the bloating and discomfort from cortisone, the fact that their son was occasionally given morphine for pain. They remember having to keep him indoors because of the swine flu outbreak of 2008 and how long it took him to physically catch up with the other kids after he was in remission. When Fabio was first diagnosed, his big sister had just started school and was old enough to understand the severity of leukaemia. At one point, she refused to visit Fabio in the hospital; it was too hard for her to see him like that.
What gave Fabio’s parents the strength to get over the initial shock and heartbreak of the diagnosis was how “Kids just accept how it is. They live in the moment.” Fabio’s younger sister treated him no differently, either playing or arguing with him during an infusion. Fabio’s parents reminisced:
His father further underscored that it’s only with a “positive attitude and bravery and the ability to look forward that getting through it is even possible.”
So while Fabio rarely thinks about being in and out of the hospital for two and a half years of treatment, his father still volunteers with the Kinderkrebshilfe Schweiz (an affiliate of Childhood Cancer International), firmly believing: “We can help other people when we openly talk about it.”
Fabio doesn’t mind discussing his leukaemia, it’s just that it’s not really on his radar. Sometimes kids at swimming will notice the scar above his ribs from the chest port (port-a-cath) and ask him about it, and he explains, matter-of-factly, “It was just cancer.”
In 2015, a persistent cough led singer Naomi Berkowitz to her primary care physician. After a chest x-ray showed a shadow on her lung, Naomi’s doctor referred her to a pulmonologist. Although a biopsy was ordered, the treatment team hesitated because the area in question was dangerously close to Naomi’s heart.
After the usual protocol of bronchoscopy and Positron Emission Tomography (PET)/Computed Tomography (CT) scans, the doctor advised Naomi that the test results were – as feared – inconclusive. But a section of her upper left lung appeared to have collapsed and would need surgical intervention.
Before the procedure, the surgeon shocked Naomi to her core when he told her that surgery would attempt to “remove as much of the malignancy as we can.”
“And that’s how I learned I had cancer,” Naomi says. With the surgeon’s brief announcement, Naomi’s world shifted into another dimension. Despite the risk posed by the location of her cancer, she went ahead with the biopsy and immunohistochemistry (IHC) testing. The diagnosis? Stage IIIB Non-small cell lung cancer (NSCLC).
Naomi didn’t keep the news to herself.
“I told the whole world,” she recalls. “I guess you could say that I didn’t have a filter. I felt like I was going around saying, hi, my name’s Naomi and I just found out I have lung cancer.”
Like many cancer patients, Naomi went online to educate herself about her disease. The prognosis was sobering – at 18 months after treatment the survival rates were only 15%. And that wasn’t the only bleak news – studies reported that only 1% of patients with mediastinal involvement survived 18 months or longer.
Steeling herself against the statistics, Naomi was convinced that although a rough road lay ahead, she would be able tough it out.
Naomi surprised her doctors by responding remarkably well to fairly aggressive treatment of surgery, concurrent radiation and chemotherapy, and one additional dose of chemotherapy. She completed treatment in late 2016.
Fighting cancer took its toll with one disheartening side effect – a frozen vocal cord that ended her singing career. Today her song is her story of courage and hope that she shares freely with the world. And Naomi has channeled her fight against cancer into a zeal for living life to the fullest and in the healthiest way possible. She changed to a macrobiotic diet, began to exercise regularly and explored ways of embracing both conventional and holistic approaches to health and healing.
Naomi also learned important lessons about living for the moment and cherishing the friends and family who rallied around her.
“It’s been an eye-opening experience,” she says. “There were people I thought would be right there with me who stayed away. But there were also so many people who stepped up with no hesitation. Overall, the universe has been very supportive.”
She adds: “In some ways, my life is richer now. I’ve opened myself to every opportunity to heal and I believe that’s why I’m still here today!”
It wasn't luck that found Yvonne Ulrich's tumour. She did.
After losing a close friend to breast cancer, Yvonne became proactive. She decided to undergo genetic counselling to assess her risk, especially since there had been several cases of breast cancer in her family. Even though the risk ratio was determined to be low, she returned to her gynaecologist twice a year for a checkup and breast examination. When a lump was discovered and diagnosed, it was still at an early stage.
Yvonne works at Roche in a leadership role, and has been on both sides of cancer. Her vigilance in taking charge of her health, however, was as a woman, not a scientist. Catching cancer early, when cells have just begun to divide, drastically improves patient outcomes. That’s why she would like to get the message out that every woman can play an active role in early detection.
Yvonne broke the news to her family following the “one-hour conversation that changed [her] life.” She knew her two boys (13 and 10 years) would be afraid, and she worried they would focus primarily on the devastation that breast cancer can cause. After all, they had lost Yvonne’s friend, too. Because she wanted them to learn to be optimistic and that disease was part of life, Yvonne suggested they be open about her diagnosis with friends at school and football. Other children were sure to reveal their own mothers’ breast cancer—healthy women her sons knew personally who showed no signs of having been seriously ill. “They heard more and more of these stories with positive treatment outcomes. It’s not always horrible, and this provided a new perspective of hope.” In addition to early detection, Yvonne also believes patients can steer their health by supporting their bodies’ immune system and strengthening the mind.
“Our cells get out of control through a trigger of great fear and want to become indestructible. We can get our cells back into balance with drugs, treatments and other interventions such as exercise, nutrition, mindfulness training and a positive attitude.” She concludes: “It’s a whole package.”
While individuals can influence recovery through early detection and balanced living, Yvonne also stresses the importance of sharing and exchanging knowledge with the wider community. Yvonne integrates being a Roche employee and a cancer patient through her passion for raising awareness within the company. “We have scientifically educated breast cancer patients at Roche who could have an important role in our personalised medicine research,” she points out. By unlocking the collective knowledge and potential within its own walls, Roche might soon be able to answer questions about why some patients heal and others don’t, and how the body is able to cure itself.
Overcoming breast cancer encouraged Yvonne to rethink what living means: “I have a dog since then. I make other decisions. Anything I’ve ever wanted to do—I do it.” She adds that “I feel better than ever in my life. It was a gift in terms of taking better care of myself and setting boundaries, but also—I’m much more relaxed about many things.” She is sharing her story because it means spreading hope. This hope will help others heal. But Yvonne has another reason to talk about her experience. It is only by gathering all the knowledge we have about cancer that a cure can be found.