Terri Stong kissing her baby boy

Finnegan’s Gift

Updated

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Duke Cancer Institute clinical social worker Terri Stong started smoking four years ago during an extremely stressful period of her life. Tobacco cessation treatment at Duke and a reminder of what she has to live for turned her around.

Oncology clinical social workers help patients and families cope with the emotional and practical concerns that accompany the diagnosis and treatment of cancer. Terri Stong, MSW, LCSW, ACSW, is one of them. Stong, 43, helps patients find financial assistance grants, work out transportation issues, access discounted lodging, locate food pantries, and join support groups. She makes home healthcare and hospice referrals and helps with advanced directives and end-of-life planning. For those patients who come alone to their appointments, she’ll come and sit with them and help them understand all the information being thrown at them, if they need her.

She is their rock in cancer’s stormy sea. But it wasn’t so long ago that it was Stong who needed a lifeline….

Terri Stong smiling at her baby boy
PRECIOUS MOMENT: Oncology clinical social worker Terri Stong, MSW, LCSW, ACSW, and her son Finnegan, Finn or Finny for short, during the limited time they had together.

His, Mine & Ours

“In 2014, I had baby boy, Finnegan. And he was born very sick. He went undiagnosed for a very long time, eight months,” said Stong, who worked in the general medicine and cardiac units of a hospital in Michigan at the time. “I was taking him to work to be seen about every two days.”

When she moved him to another hospital, Finnegan was almost immediately diagnosed with two very rare, very severe airway disorders — tracheobronchomalacia and a laryngeal cleft — and he underwent multiple surgeries.

“He started to suffer anoxic brain injuries from lack of oxygen. I really just watched my little boy, slowly over time just deteriorate and deteriorate and deteriorate. He eventually ended up with a trache (tracheostomy tube) and a feeding tube,” said Stong.

There came a point that Stong decided she couldn’t let him suffer from the life-limiting illnesses any longer and she asked for palliative care support. This wasn’t the quality of life she wanted for her child.

For a month she learned how to independently care for him, including how to do CPR and how to change his trache. Then she brought Finnegan, now 19 months old, and his ventilator, which he would need for sleeping, home for good. For two months at home he struggled to breathe every day and was always sleeping. Because he needed 24-7 care, she and her partner hired a private duty nurse so they could sleep and tend to their three other young children.

Stong and her partner made the heart-wrenching decision to move him from palliative care at home into hospice on February 8, 2016. He died a week later, age 21 months.

The emotional fabric of the couple’s blended family — already frayed from more than a year of intense stress caring for and worrying about Finnegan — began to unravel. The love-of-Stong’s life started drinking excessively and totaled the family car.

Stong, who was no longer working, began smoking, first one, then two cigarettes, then a half a pack that “easily escalated into an entire pack.”

“When I wanted to take a break, I would go outside and smoke,” said Stong. “It was the only time that I felt like I was actually breathing. Smoking was a way to take a timeout from crying or pacing or cursing at God or whatever else I was doing. And I would just chuckle over the irony. What a morbid thing, to have watched my son struggle just to take a breath, and yet, here I was destroying my own body and my lungs.”

Sakinah Omar, a obacco treatment specialist, smiling
Sakinah Omar, LCSW, is a master's level tobacco treatment specialist who received training through the Duke-UNC Tobacco Treatment Specialist Training Program.

Wits’ End

Stong and her partner would split up by the end of 2016, the year they lost their son. He would take his daughter, who Stong had grown close to, and move to Canada. Now facing a triple loss — first Finnegan, then her partner, then her step-daughter — Stong decided to pull up stakes with her two daughters, aged 10 and 12, and move to North Carolina for a fresh start with a new job at UNC Hospital in Chapel Hill. It wasn’t a good fit and, in June 2018, she accepted the position of oncology clinical social worker at Duke Cancer Center Durham.

Shortly thereafter, in August 2018, she committed to quitting smoking.

“I thought, ‘I cannot be working in this cancer center and be a smoker. I mean that’s an oxymoron,’” Stong recalled, knowing that smoking raises one’s risk for nearly all cancers.

So she walked down the hall from her office to the Duke Employee Occupational Health & Wellness offices, and began treatment with fellow clinical social worker, Sakinah Omar, LCSW, a master's level tobacco treatment specialist who received training through the Duke-UNC Tobacco Treatment Specialist Training Program, a collaborative effort of Quit at Duke (the Duke Smoking Cessation Program housed within Duke Cancer Institute), the University of North Carolina Tobacco Treatment Program, and the North Carolina Division of Public Health, to train healthcare and public sector professionals in tobacco cessation.

At Duke, tobacco treatment specialists work under the auspices of Employee Occupational Health & Wellness/LIVE FOR LIFE (for Duke employees), Student Health (for Duke students) and Quit at Duke (for Duke patients). Quit at Duke operates across 11 Duke Health sites in the Research Triangle area and has also opened affiliate programs at WakeMed in Raleigh and at Augusta Health in Virginia’s Shenandoah Valley. The program is run through a team-based approach in which medical clinicians work together with behavioral providers to help smokers quit smoking.

All tobacco treatment specialists affiliated with Duke offer robust, evidence-based, individualized treatments (all available via telehealth), including prescription medications, behavioral interventions and counseling, to support people in their efforts to stop using tobacco (cigarettes, e-cigarettes, cigars, pipes, and chewing tobacco).

Per the Centers for Disease Control and Prevention, smoking is the leading cause of preventable death in the U.S. The same is true in North Carolina. Cigarette smoking is responsible for more than 480,000 deaths per year in the country, including more than 41,000 deaths from secondhand smoke exposure.

  • Smokers have a higher risk for lung cancer, lung diseases, and chronic obstructive pulmonary disease (COPD), which includes emphysema and chronic bronchitis, than non-smokers.
  • Cigarette smoking is a risk factor for nearly every cancer in the body, including cancer in the mouth, throat, esophagus, stomach, colon, rectum, liver, pancreas, larynx, trachea, bronchus, kidney, bladder, cervix, and blood (in acute myeloid leukemia).
  • Cigarette smoking also increases the risk for diabetes, tuberculosis, certain eye diseases, and problems of the immune system, including rheumatoid arthritis.
  • Smokers are also at increased risk for heart disease and stroke. Cigarette smokers are two to four times more likely than non-smokers to get heart disease (20% of smoking deaths) and cigarette smoking doubles a person's risk for stroke.

There are two categories of tried-and-tested tobacco cessation pharmaco-therapies on the market:

  • Nicotine replacement products that supply just enough nicotine to help reduce smoking withdrawal symptoms with none of the toxic chemicals emitted by a lit cigarette (nicotine chewing gum, the nicotine patch, and by prescription only, a nicotine inhaler or nose spray)
  • Non-nicotine drug options, including varenicline (trade name: Chantix or Champix), which decreases the desire for nicotine, and bupropion (trade name: Wellbutrin), approved as both an anti-depressant and as a smoking cessation aid that’s been shown to alter mood transmitters in the brain linked to addiction.

Stong tried varenicline, but it had made her cry all the time, so she couldn’t continue it. When she switched from cigarettes to Nicorette chewing gum, she was “popping it into her mouth like candy” — over and above the recommended dose.

James Davis, MD in white doctor coat
James Davis, MD, was hired to launch the Duke’s first tobacco cessation treatment program in 2015. He had run a similar program for nearly a decade in Wisconsin. With more smokers in North Carolina — the state is in the tobacco belt — than in Wisconsin, Davis said his work here in tobacco cessation “is a great place to be for what I do.”

She briefly considered joining Mindfulness Training for Smokers, a seven-week group behavioral intervention now provided via Zoom. The intervention is run by trained Quit at Duke therapists and was developed by James Davis, MD, medical director and founder of Quit at Duke. Davis explained that  this type of intervention “has a very high success rate for those who stick with it,” but Stong was the type to shy away from groups, preferring one-on-one interaction instead.

Everyone responds differently to the various interventions available. Davis said that the patients who receive treatment through Quit at Duke, have often “tried everything and are at their wits’ end.”  

The tipping point for many is their doctor telling them they’re developing heart disease or lung disease or that they have cancer. Included in this, patients have to be tobacco-free in order to undergo cancer surgery.

“The truth is that it can be incredibly difficult to quit smoking,” said Davis. “When I was in residency, smoking cessation was taught as something relatively simple – we were taught to make sure our patients knew smoking was bad for them, help them set a quit date, get them on a nicotine patch, and provide some follow up. We called it ‘patch and a pep talk.’ It was something we could do in about 10 minutes. Smoking cessation has gotten more complex since then. The smokers that we see now, on average, have been on multiple smoking -cessation medications, and have tried to quit an average of seven times. They have all been through ‘patch and a pep talk’ a multiple times.”

Primary care providers or oncologists often don't have the time, or the expertise, to delve into a patient's tobacco use, really understand what's driving their addiction, and create a program for successful cessation, explained Davis, hence the emergence of smoking cessation programs.

“At Duke, we now have clinicians and behavioral health providers who have tobacco treatment expertise. They can move the ball down the field with these hard-to-treat smokers. It's what we do for a living,” said Davis.

Terri Stong and two daughters smiling outdoors
SUNNY DAYS AHEAD: Terri Stong, MSW, LCSW, ACSW, and her daughters, this summer in Cary, North Carolina. Stong completed tobacco cessation treatment in August.

Her Last Cigarette

When the anniversary of Stong’s son’s death came up in February 2018, she had a setback. She started smoking again for nearly another year — sometimes a whole pack a day and sometimes just a couple of cigarettes with her morning coffee and/or her evening wine. And she kept chewing the Nicorette gum.

In January 2020, determined to make another attempt at breaking her smoking habit, she scaled back to one cigarette per day. Progress.

Stong had been in the homes of dying cancer patients with a history of smoking. She had seen firsthand what tobacco use could do to the body. But it was the COVID-19 pandemic, which hit the U.S. hard in mid-March of this year that ultimately drove Stong to quit smoking for good. She panicked.

“I was watching the images of these people on ventilators on TV and how they couldn't be with their family members while they were dying. It was triggering to me. I was like, ‘Oh my God, I'm watching my son all over again, except it's happening to hundreds of thousands of people.’ It was so hard for me to see it. I was emotionally all over the place,” shared Stong. “I couldn’t stand to watch other people suffering like that, in that way.”

“Something in my mind just completely shifted. I was just like, ‘I can't lose another child and I can't have my children lose a parent, they've lost enough already,’” Stong continued. “There was just no way that I could possibly pick up a cigarette. I just couldn't. I haven't. All I knew was that I had two beautiful girls (age 12 and 14) that needed their mother and that I had a life, not just to live for them and myself, but for my son Finnegan.” 

For a couple months Stong stayed on the Nicorette gum, then she quit that, too. It was making her sick.

Then, in June, her mother back in Michigan had a health emergency and was placed on a ventilator for 10 days in an active COVID-19 unit. (She didn’t have the coronavirus, she just needed the ventilator)

“I thought I was going to have to pull the plug on my mom; watching her on a ventilator triggered me again. I’d already watched my son like this,” shared Stong. “With the possibility of having to make this life-changing, life-ending decision, I felt like I was right back in that place again. It really could have been a trigger for me to smoke, but I didn't.”

From what tobacco treatment specialist Sakinah Omar, LCSW, has observed in Employee Health, people usually attempt to quit smoking for health reasons and/or to save money. Tobacco products are expensive. This year, she’s noticed other significant motivating factors in the mix as well, including Duke preparing to then becoming a Tobacco Free Campus as well as fears about what COVID-19 could do to their lungs if they caught it.

Lung disease — the point at which observable pathology has progressed to noticeable symptoms — has been linked to significant complications in the treatment of COVID-19. While the number one cause of lung disease is smoking, not all smokers have lung disease.

“We've already seen that when a person develops lung disease, they’re more vulnerable and have a higher incidence of moving on to those severe manifestations of COVID-19. We don't know yet if simply smoking by itself is a risk factor for a more severe form of the disease,” explained Davis. “Some patients who are nervous about lung disease or who have already developed a respiratory condition related to smoking, like COPD, asthma or chronic bronchitis, want to quit because they feel like they’ll be at greater risk if they get COVID-19.”

“Here is a piece of COVID-19 that we can do something about,” continued Davis. “If people are able to stop smoking and stop the progression of lung disease, then as time goes on, it becomes less likely that if they do contract COVID-19, they’ll develop these severe respiratory complications.”

But there’s a catch. Coronavirus has also triggered many smokers to suspend or delay smoking cessation treatment, Davis has observed.

Continuing to smoke has been a way to cope with the uncertain situation, a change in life-style, a change in work-style, the responsibilities of caring for young children at home instead of daycare and/or overseeing ‘virtual school’ at home, not to mention job loss and financial hardship.

“I’ve really seen both sides. “I've seen people who say, ‘Hey, I, I really need to quit smoking because of COVID-19 and I've counseled people who say, ‘I wanted to quit, but things are just too crazy right now. I need to wait a couple of months,’” said Davis. “It’s hard enough to quit smoking; even more so when times are stressful.”

The Other Side

Stong’s experience as a mother and patient advocate for her son, as a seasoned social worker who’s counseled heart disease patients and cancer patients, and as a smoker who’s battled personal crises and nicotine addiction, has greatly informed her personal and professional path forward.

She’s been at her wits’ end and come out of it on the other side in more ways than one.

“I've been there when somebody held my hand and got me into Ronald McDonald House at the very last minute, and I also know what it was like to feel angry, alone and isolated when someone wasn’t doing their job,” said Stong. “I feel like it's my responsibility to make sure that every single person that comes through the cancer center that needs me knows that they have me and that I'm not going anywhere. And I will stay with them and I will follow them until they tell me they don't want me to anymore.”

Omar continued to check in with Stong on a quarterly basis to see how she was doing with tobacco abstinence. Stong completed her treatment in August. Stong’s close-knit network of family medical therapists and social workers at the cancer center also have her back.

“I'm doing great,” said Stong. “I like to think that it's because I've got a little boy who's looking out for me. He shows me all the time that he’s around. I've started running, which keeps me motivated. You can't run if you're smoking a pack of cigarettes a day. You can't enjoy life if you’re unable to climb mountains and enjoy the beach because you can’t breathe. All my years of experience have led me right here. I need to stick around at Duke, so I can keep doing this for many more years. If I’m smoking, I can’t do that.”

While the Quit at Duke program is part of the Duke Supportive Care and Survivorship Center at Duke Cancer Institute, its tobacco treatment specialists serve any patient who uses tobacco across Duke Health. This includes 13 Duke Health sites in the Research Triangle area of North Carolina and one site in Virginia’s Shenandoah Valley, Duke Cancer Network member Augusta HealthFind a Quit at Duke Clinic Near You.

This page was reviewed on 11/18/2020