Lauren Ghazal was in a state of shock after she received a stage 2 Hodgkin lymphoma diagnosis two years ago. “I couldn’t process anything that was happening,” says the now 28-year-old. “I focused on doing what was needed to get through treatment.” Cancer treatments were rough, but Ghazal was even less prepared for what came after treatment ended. “I no longer had frequent visits with my oncologist. Friends and family checked on me less and less. And there I was, bald and extremely fatigued from chemotherapy,” Ghazal says. “I’m told to go and live my life again. And that’s when I fell apart.”

Up to 20% of cancer survivors experience significant anxiety, depression and/or post-traumatic stress sometime during the 10 years after receiving a cancer diagnosis. Nearly twice as many deal with fear of recurrence and distress brought on by post-treatment side-effects, altered body image, social isolation and financial struggles. “People want you to bounce back to your precancer self because they’re truly happy that you’re finished with treatments and free from disease,” Ghazal says. But she unexpectedly found herself facing an onslaught of new diseases, ones that threatened her mental well-being. “I was diagnosed with severe anxiety and depression,” she says. 

A family nurse practitioner, Ghazal learned she had cancer while pursuing a doctorate in nursing research at the New York University Rory Myers College of Nursing. Inspired by her life experience, she now studies cancer survivorship issues in adolescents and young adults with the goal of improving their overall quality of life.

Back To 'Normal' After Treatment For Cancer

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being. “Post-treatment is the time when well-intentioned family and friends assume their loved one is ‘back to normal.’ But it’s also the first time a cancer survivor has the time and energy to process their experience,” says Lucia Fanjul, a licensed master social worker at CancerCare, a national nonprofit organization that provides free professional support services to people affected by cancer. “For survivors, this is often a period of intense sadness, anger, instability and anxiety. The urgency of the diagnosis and active treatment has passed, but the emotional turmoil remains.”

Studies show that cancer survivors are more than twice as likely to have debilitating mental health problems and 

worse overall quality of life than people who never get the disease. And the incidence of mental health problems is six times higher in survivors who have other chronic illnesses, such as heart disease or diabetes. In general, cancer survivors who are young, less educated or earn lower incomes struggle the most.

Baltimore resident Katie Petralia was diagnosed with anxiety and post-traumatic stress disorder (PTSD) after completing treatment for stage 2 non-Hodgkin lymphoma three years ago at age 23. “My anxiety level skyrockets every time I meet new people who don’t know my cancer story,” she says. “I’m nervous to bring it up because I don’t know how people will react. It’s like I’m hiding some big secret.” Petralia is also still coming to terms with another unexpected blow: Cancer treatments may have affected her chance to bear children. “I had to start chemotherapy immediately because masses pushing on my throat made it hard to breathe. There wasn’t time to look into fertility preservation,” she says. “Even though I’m not at a point in my life where I’m ready to start a family, it’s been emotionally difficult to come to terms with what may or may not be possible for me in the future.”

Doris Cardwell of Spearfish, South Dakota, struggles with a different, all-consuming worry: whether her three daughters will also develop breast cancer. Cardwell, a contributor to CURE®, a sister publication of Heal®, learned of her stage 3b inflammatory breast cancer in 2007 when she was 38. While there doesn’t seem to be a genetic link to this type of breast cancer, Cardwell wrestles with guilt. “My daughters are in a high-risk category because of my health history,” she says. “At a very young age, they’ve already had to face life-altering decisions. I worry about them getting breast cancer, as well as my cancer coming back.”

While undergoing treatment at Cone Health Cancer Center at Alamance Regional in Burlington, North Carolina, Cardwell helped start a survivorship program. She’s now an ambassador for the National Coalition for Cancer Survivorship (NCCS). After more than 10 years in remission, Cardwell says she doesn’t think she’ll ever put cancer completely behind her. “People offer encouragement and say, ‘You’ll be fine,’ when I have a scan coming up,” she says. “But only someone who has experienced cancer understands how quickly life can change. You never again assume that everything will be fine.”

Well-intentioned family and friends aren’t the only ones who assume all is well. After treatments, cancer survivors often find themselves thrust back into the care of primary care physicians who may not fully grasp cancer’s lingering effects on both the body and psyche. Cardwell temporarily relocated her family to North Carolina while getting treatment. Now that she’s living in South Dakota, finding a doctor who understands issues such as the cardiotoxic effects of chemotherapy on the heart has been a struggle. “One doctor told me my concerns were unfounded. I felt like I was being labeled a difficult patient,” she says.

Dr. Thomas J. Smith, a medical oncologist and palliative care specialist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, understands Cardwell’s concerns, but he says primary care physicians are challenged to keep up with the latest findings on all types of diseases from heart disease, diabetes, hypertension and, yes, cancer. “Ideally, a patient would take a survivorship care plan prepared by their oncologist or cancer center and hand that to their primary doctor to get the ball rolling on proper follow-up care,” says Smith, who also recommends asking the front desk to schedule a longer appointment so a patient doesn’t feel rushed.

Anxiety, depression and PTSD are the most well-known mental health problems associated with cancer. But doctors are seeing an uptick in cancer survivors who feel demoralized and apathetic. “These are true clinical diagnoses,” Smith says. “You’re tired of being tired. You’re tired of feeling hopeless, sick and helpless. Yet you feel like there’s nothing you can do about any of it, so why try.”

Smith knows this feeling intimately. In 2016, he had surgery for prostate cancer. The cancer came back and spread. Treatment intended to save his life caused lung damage that keeps him from enjoying a lifelong passion: running. At one point, he felt so low that he checked into a psychiatric unit to keep from harming himself. “The continual uncertainty of what life holds takes a toll,” he says. 

“You’re always wondering: Will the cancer come back, what will that feel like, can I make it through more treatments, how will it affect my loved ones? And, of course, am I going to die sooner than I hoped?” Recently, Smith recognized that he and the cancer survivors he treats experience PTSD triggers almost daily. “It can become a constant struggle to have a few hours where you don’t think about cancer,” he says.

Dealing with cancer is a life-altering, traumatic experience. “A cancer survivor needs time to process what has happened to them and to understand how the experience changed them,” Fanjul says. A mental health counselor can give survivors the tools to work through emotions. Antidepressants or anti-anxiety medications can help, if needed. What someone shouldn’t do is hide their emotions or feel shame, says Sarah Johnson of Boston. In 2017, Johnson, then 28, put on a 

brave face as she received treatment for papillary thyroid cancer. 

“You hear that thyroid cancer is a ‘good cancer to have.’ It’s highly treatable and curable. So that’s the message I conveyed to everyone: It’s cancer, but it’s no big deal,” she says. A year after surgery and radioactive iodine treatment, Johnson found herself swept up in a tidal wave of emotions. “It was like, ‘Oh my God, that was horrible! That was a big deal, and I’m not OK!’” says Johnson, who discovered that it’s harder to ask loved ones for support later on after having been emotionally detached during treatment.

Help comes in different forms. For Smith, an online support group provided a lifeline. “I had some unusual medication side effects that even my doctors didn’t understand or acknowledge, and then I found a discussion online dedicated to the topic,” he says. “I felt less alone and less crazy.” Meditating also helps him be less reactive to situations out of his control. “If I start to get panicky about an upcoming test, I find a space for that worry in my brain and park it there.” Smith uses Calm, a meditation app, and he also recommends some form of structured exercises such as walking, yoga or tai chi. “There’s undeniable proof that these activities benefit a cancer survivor’s physical and mental health,” he says.

Petralia found comfort in a four-legged friend. Earlier this year, she adopted an emotional support animal. “When my anxiety goes up, petting my cat Stevie calms me down,” Petralia says. Studies show that having a pet lowers stress, anxiety and depression and eases loneliness. If you live in a place that doesn’t allow pets, an official letter from a licensed mental health counselor allows you to have an emotional support animal regardless of the no-pet policy and without paying extra fees. And because emotional support animals don’t need special training like service animals do, you can find a good fit through your local animal shelter.

While undergoing treatment, Ghazal participated in an eight-week creative writing class sponsored by Lacuna Loft, a nonprofit organization that supports young adult cancer survivors and caregivers. She continues to put pen to paper, capturing her feelings in a journal. “I still see
a therapist, and when I’m anxious, I journal and talk to my friends,” she says. “At first, I felt defeated that I had just finished this rigorous cancer treatment, yet I couldn’t control the emotional fallout. My therapist helped me learn not to be ashamed to talk about the mental health effects of my diagnosis with others.”

Cardwell also finds it therapeutic to talk about her feelings — to family and friends, co-workers, her therapist and others. Her 

 and her NCCS ambassadorship are two ways she lets other cancer survivors know that it’s OK to feel all of the emotions. “I want others to know that they’re not alone, they’re not crazy and normal isn’t really a thing once you’ve had cancer,” she says. Cardwell is doing her part to educate people without cancer, too. “I’m no longer bashful about explaining how cancer affected me in the past and continues to affect me today,” she says. “I remind myself that people have no idea what it’s like inside my heart, body or head post-cancer. They can only know if I tell them. Over the years, I’ve learned that it takes more strength to get help than to hold it all in. If you don’t get it out, it will swallow you.”

For more news on cancer updates, research and education, don’t forget to

Articles

Feature

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being.

Navigating the Psychosocial Effects That Can Outlast Cancer And Its Treatment

Uncertainty still fills the air as the COVID-19 pandemic enters its third surge. 

Will there be another round of the virus this winter? Or have the months of staying home, social distancing and mask-wearing pushed us to an almost new normal where we can safely dine indoors, get back to the office, gather inside places of worship and throw parties with family and friends?

Cancer survivors already know what it’s like to live a new normal. They’ve done that since diagnosis. To them, social distancing isn’t an unfamiliar burden. It’s what they have always done to keep themselves safe and healthy.

But being that many are immunocompromised from treatment and the disease itself, survivors likely need to take even stronger precautions while navigating a world where COVID-19 is present.

This fall, offices began to reopen, leaving employees unsettled, especially survivors and caregivers. Within these pages, Triage Cancer, a national nonprofit organization that provides education on the practical and legal issues that may affect people diagnosed with cancer, lays out laws created to protect individuals heading back to work. Be prepared, ask questions and know your rights.

Our cover story digs deeper into the psychosocial and physical lasting effects of cancer, from anxiety and depression to infertility and guilt, which some survivors feel for potentially passing the disease onto their children. Five survivors walk us through their lives post-cancer and share how they’re dealing with a survivor state of mind.

A childhood cancer survivor fulfills a lifelong dream to inspire others through the new book “Beyond Remission: Words of Advice for Thriving.” Melody Lomboy-Lowe and her niece spent two years interviewing and photographing survivors from across the country, then editing it to create something to inspire hope in those who need it most. After receiving an acute lymphoblastic leukemia diagnosis at age 6, Lomboy-Lowe spent years in and out of treatment followed by scans into her adult life. But through it all she has managed to see the beauty in life by focusing on the motto “Don’t waste time.”

Also inside: opioid use in survivors, how COVID-19 affected breast cancer survivors and easy-to-make sweet and savory meals.

We hope you find both practical information and everyday inspiration, and, as always, thank you for reading.

From the Chairman

As some workplaces begin to head back to the office, it's important for patients with cancer and cancer survivors to understand the laws that protect them during the COVID-19 pandemic. 

Cancer and COVID-19: Learn the Laws That Protect You in the Workplace

After months of working from home or not working at all, employees across the United States are being asked to return to the workplace for the first time since the country essentially shut down because of COVID-19. People who have cancer or who are a caregiver to a patient with cancer may question what options they have.

Employers are required under federal law to make sure workplaces are safe. State and local rules, such as social distancing, spacing of work stations, requiring masks, taking employee temperatures and asking employees to self-report illnesses, may also be in place. Some employers may have additional policies.

However, these precautions may still leave employees concerned. Before figuring out which laws apply, each individual must consider their needs.

Americans with Disabilities Act (ADA) and Reasonable Accommodations

: If someone’s goal is to continue working, they should check if there are reasonable accommodations available under the ADA or state fair employment law. For example, a change in a person’s workspace, such as telecommuting from home or working from a different location, is a potential reasonable accommodation. Other examples include access to protective equipment or changes in job responsibilities.

: If a person has any paid time off (sick or vacation time), they may consider using that benefit. But it’s crucial to remember this time off is not usually job-protected.

Emergency Paid Sick Leave Act (EPSLA) through the Families First Coronavirus Response Act (FFCRA): 

EPSLA provides two weeks of paid sick leave for employees who are unable to work or telework if:

A doctor advises the employee to self-quarantine.

The employee has COVID-19 symptoms and is waiting for a diagnosis.

The employee is caring for an individual under quarantine or medical self-quarantine.

The employee is caring for a child whose school or place of child care is closed or unavailable due to COVID-19.

The Department of Labor has clarified that individuals who have been advised to self-quarantine because they have been exposed to COVID-19, or are particularly vulnerable to COVID-19 and quarantining themselves based upon that advice, are prevented from working (or teleworking). Under the act, paid sick leave does not apply to individuals who decide to self-quarantine for an illness without medical advice, even if they have COVID-19 symptoms.

Emergency Family & Medical Leave Expansion Act (EFMLEA) through the FFCRA. 

If someone is unable to work or telework because they have a minor child whose school or place of child care has closed because of COVID-19, they may be eligible for up to 12 weeks of job-protected leave (10 weeks are paid leave).

Family & Medical Leave Act (FMLA) & ADA: 

FMLA provides eligible employees with time off for their own serious medical condition or as a caregiver of a spouse, parent or child. However, the individual’s medical condition must prevent them from being able to work. It is not enough to say that they fear getting COVID-19. An individual’s health care team can help them document any side effects from treatment, including a compromised immune system, and explain why these side effects keep them from being able to work. If someone does not qualify for FMLA leave, they may be able to take time off work as a reasonable accommodation, if eligible under the ADA or state fair employment law.

If an employer has let an individual go for not returning to work, they may qualify for unemployment. 

Unemployment benefits and rules are different in each state, although the federal government has expanded benefits due to COVID-19.

Are you entitled to reasonable accommodations?

No. Under the ADA, caregivers are not entitled to reasonable accommodations. However, they may still ask their employer for accommodations.

Can you qualify for the new paid sick leave (EPSLA)?

Maybe, if you are caring for a minor child whose school or child care facility is closed. Also, you may qualify if you are caring for an individual who is self-quarantining because a health care provider has advised that individual to quarantine because they may have COVID-19 or the individual is particularly vulnerable to COVID-19 and providing that care prevents them from working or teleworking.

Can you qualify for the new paid family leave (EFMLEA)?

Maybe, if you are caring for a minor child whose school or child care facility is closed, and other caregivers are not available.

Maybe, if you are eligible for FMLA leave as a caregiver of a seriously ill child, parent or spouse.

Can you qualify for unemployment if your employer lets you go for not returning to work?

It is unclear if caregivers concerned about exposing a family member to COVID-19 who leave their jobs or do not return to work would be eligible for unemployment benefits. State unemployment agencies have been looking at these situations on an individual basis.

At the time of publishing, this was the most accurate information regarding COVID-19 and laws protecting patients with cancer and caregivers.

Advocacy

Businesses are reopening offices, leaving unanswered questions for employees who have cancer or take care of someone who does.

What You Need to Know About Returning to Work During the COVID-19 Pandemic

Holding governmental office comes with its fair share of surprises, but Larry Hogan was in for the shock of his life when he received an advanced lymphoma diagnosis in 2015, shortly after being elected governor of Maryland.

“We had just battled riots in Baltimore. I just finished our trade missions. And then five months of being on the job, I thought, ‘Is this really how it’s all going to end?’” Hogan said in an interview with 

But the governor pushed on with his treatments — which involved a regimen referred to as CHOP: cyclophosphamide, doxorubicin hydrochloride (hydroxydaunorubicin), vincristine sulfate (Oncovin) and prednisone — and his gubernatorial duties. Then, three years later, a second diagnosis, a less severe skin cancer.

Throughout his journey, Hogan met some amazing patients. His interactions with them, as well as his own experiences with the disease, inspired him to write his book “Still Standing: Surviving Cancer, Riots, a Global Pandemic, and the Toxic Politics that Divide America.”

Heal®: Can you walk us through your cancer journey from the beginning?

: I had just been elected governor of Maryland. I’d only been governor for five months. I was on our first trade mission to Korea, China and Japan, and we had been really busy going through a yearlong campaign, our first legislative session, (and I) had been working day and night.

I had no idea I was really sick, but I started to have some aches and pains on this trip. I started to feel a little rundown, but I thought I was OK. But (then) I noticed a lump in my throat, and I said, I better check this out. And so I went to the doctor as soon as we got back, and the first primary care physician sent me to another doctor, (who) sent me to another doctor, and I ended up having three doctors. After doing a bunch of CAT scans, (the doctors) walk into the room together. ... they said, “We have some bad news to share with you, Governor. You have very advanced and aggressive cancer. We found about 50 some tumors from your neck to your groin, and we’re going to set you up with a specialist oncologist.”

I was stunned (because) my first doctor said (he) didn’t think it was anything to worry about, (that) it’s probably just a benign cyst of some kind of fluid in my lymph node and my neck. Then I heard this shocking news and it set off a whole series of things. This was Father’s Day weekend, Friday of Father’s Day weekend.

My very first thought was not really about being afraid of what was going to happen to me, but I think it’s probably what so many other cancer patients go through: my first thought was of my family. How am I going to tell my wife? My three daughters were coming to visit for Father’s Day weekend, I was going to break that news to them.

And then my dad, who was coming over for Father’s Day weekend, and it doesn’t matter how old you get, you know, I was still his little boy. And he took it almost tougher than anybody. But it was a group hug, a little tears, and I thought everybody was going to be OK. And then, you know, I had to break the news to my staff, who work so hard and were just getting started on our administration. And break it to the six million people of Maryland, who put their faith and trust in me to help run the state. I was trying to be as open and honest and transparent as I could possibly be with all the people of the state. They went through and shared the whole cancer battle with me.

What was it like going through aggressive treatment while also serving as governor?

I had to tell the people in Maryland. They were going to say, “Hey, where’s the governor?” (when) I was going to be tied up going to these treatments. So I had to be open and honest. And so right after I told my family, I had to do a biopsy surgery, and they were removing a lymph node from under my arm and I was under full anesthesia. And then they gave me some pain pills afterward, and they said, you just have to go home and rest and don’t make any big decisions. And I said, I have a press conference this afternoon. The doctor said, “No way, you can’t have a press conference. You’re not going to (answer the public’s questions), are you?” And I said, “Yeah, I think they’re going ask me a lot of questions.”

But I went out there. Maybe it was truth serum. I was very relaxed, but I told the people exactly what was going to 

happen in that I had to start aggressive chemotherapy, and I was doing a thing called CHOP, which is a concoction of five different types of drugs administered for four straight days, 24 hours a day in the hospital. Then I would take 10 days out of the hospital to come home, recuperate and rebuild my white blood cells and then go back in again and then again. And this took place over a five-month period and then I did another year of kind of maintenance chemo. But I worked through the whole thing, like so many people who try to continue with their life and sometimes have to go to work even though they’re in a lot of pain and they’re not feeling well.

It was a struggle, but I met so many other patients who were going through much more difficult challenges than I was. (Treatment) becomes cumulative... the first one wasn’t so bad. And then the next one didn’t feel that great. And the third one, all of my beautiful hair fell out in the shower. And then by the end, it was pretty debilitating. 

I was in a lot of pain, and you know, it takes a real toll on your body. But you actually get beyond that. And it was a tough regimen to go through. But, thank God, we had incredible doctors and nurses. And the technology, the drugs that we have today, the improvements (being made) in cancer research are saving a lot of lives.

What was it like having a second cancer diagnosis thrown your way so soon after the first?

Well, it wasn’t nearly as serious. I don’t want to diminish the importance of people going to the dermatologist, skin cancers can be scary. I did have maybe 

30 some stitches that hopefully aren’t too visible. I caught it pretty early. ... It was not nearly as scary as the diagnosis I got with the tumors all over my body with the aggressive cancer of the immune system.

Just the word “cancer,” hearing it again so quickly after that was not something I wanted to hear. But it was much easier to go through. I didn’t look so good. I looked like I’d gotten in a fight or I was a hockey player, and I had to be on television and going to press conferences with scars all over my face for a while. But that was a much easier cancer to go through. I’ll tell you what, I also use that to message to people about the importance of sunscreen and doing regular skin checks. Don’t make the same mistakes I made, of being out in the sun and being unprotected.

You’ve written a book where you talk about courageous people you met while you were fighting cancer. Can you share some insight into those folks and their journeys?

I couldn’t stand lying in bed the whole time (I was in the hospital), but I was attached to this pole with the chemo bags 24 hours a day and it has wheels on it. So I just did laps around the hospital. And I would get to meet all these folks. I first met a woman named Shelly who was from West Baltimore, and she had lost her hair....We started doing laps together, and we were joking bald is beautiful. And she was telling me her experiences, what she was going through.

Then I met a young man named Jimmy who had Down syndrome, and he was fighting leukemia. And he just had the most incredible positive spirit and energy of anybody I’ve ever met, and I 

started to do things when I was out of the hospital with groups of (children with cancer). I went down and visited kids in the pediatric oncology ward and met their families.

I met this one young man, Andrew, (when) we took some kids out to a ballgame. And this young little 5-year- old kid came up to me with his mom.

We introduced them to some football players, and they got autographs for the kids (who) were battling cancer. And this young man comes up to me and he says, “Governor, I heard you have cancer, and you’re going through chemotherapy,” which he had been going through for a couple of years already. And he says to me, “My mommy helped me write a list for you.” And so he goes through this list he gives me and there are 10 things on the list. It’s like, “Make sure they give you the num num cream before they give you the pokey. You know, find a hugging person ... mine is my mommy. You might not like the doctors at first, but they’re there to help you.” (His mother) wrote it all, but he was telling her the things to tell the governor.

So we became pen pals and I helped him celebrate when he rang the bell and was cancer-free. He was there at my press conference, (and he) came up and hugged me when I was cancer-free. There are many of these stories, (including of) Jimmy, (the young man) with Down syndrome. I have a Governor’s Courage Award that I present at Special Olympics every year to an athlete. I picked the first one for this young man, Jimmy Myrick Jr. Unfortunately, he died of his battle with cancer, and I spoke at his funeral. I had named (the award) the Jimmy Myrick Jr. Governor’s Courage Award, and I got to present it to him right before he left the hospital. And he was so excited. But sadly, when he went home, he caught an infection and died shortly after that, so there are some really sad stories about people we lost along the way. But (there also are) some really exciting, happy stories, you know, success stories. And I’m still in touch with some of the families, and I’ve met some incredible people.

Speaking Out

Doctors told Maryland Governor Larry Hogan to go home and rest after undergoing cancer surgery. But he had other plans: sharing his health issues.

Heal^® Fall 2020

Navigating the Psychosocial Effects That Can Outlast Cancer And Its Treatment

Cancer and COVID-19: Learn the Laws That Protect You in the Workplace

What You Need to Know About Returning to Work During the COVID-19 Pandemic

From Chemotherapy to Constituents: Maryland Governor Faces Cancer, Politics

Latest News

Heal® Fall 2020

Navigating the Psychosocial Effects That Can Outlast Cancer And Its Treatment

Cancer and COVID-19: Learn the Laws That Protect You in the Workplace

What You Need to Know About Returning to Work During the COVID-19 Pandemic

From Chemotherapy to Constituents: Maryland Governor Faces Cancer, Politics

Latest News

Heal^® Fall 2020