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The Value of Fighting For Answers
In late August 2014, Gary Maxwell began experiencing shortness of breath while splitting wood at his home in Pennsylvania. It wasn’t out of the ordinary for Gary to split wood in his backyard, but this time, he couldn’t seem to catch a full breath no matter what.
He then made an appointment with his long-time family doctor to see what was wrong. Gary was diagnosed with bronchitis and prescribed antibiotics. After completing one round of antibiotics, his symptoms persisted.
So did Gary.
He returned to the doctor and was prescribed a second round of antibiotics. Still no change. Gary’s doctor – unsure of what could be causing his symptoms – then advised him to go to the local hospital’s emergency room to get X-rays.
After the X-rays, doctors recommended he return to the hospital to undergo an emergency thoracentesis, which is a common procedure used to remove fluid buildup in the lining of the lungs, also known as pleural effusions and a primary symptom of pleural mesothelioma. The surgeon sent a sample of Gary’s fluid buildup to a lab, and the results came back atypical.
Ten days after the emergency thoracentesis, Gary’s shortness of breath worsened significantly. In search of the answers they had been wanting for weeks, he and his wife, Donna, returned to the hospital for a second thoracentesis. Doctors did not originally plan to perform a biopsy on Gary’s lung.
But his wife demanded it.
The biopsy results came back on a Friday afternoon. The hospital called Gary to let him know the results were in, and they wanted to schedule an appointment for the following week to discuss the results.
Gary refused to wait that long and demanded they see him that same day.
When the hospital did not oblige, Gary and Donna showed up at the hospital’s medical record department and demanded to see his report. He would not take no for an answer. He says he deserved to know and recalls thinking it was emotionally cruel to make him wait a weekend and days into the week to find out his biopsy results.
When he was finally given his biopsy results, he read the words that would change his life.
Snapshot of Gary Maxwell's Mesothelioma Survival
Chemotherapy; Pleurectomy with decortication
Starting the Fight
At the time, he wasn’t exactly sure what mesothelioma was, but he did know the word “malignant” was not a good sign. He showed Donna the results, and she immediately broke down in tears. Gary remained calm and almost found a sense of relief that he now had the answer to his health issues.
“Now we know what we’re dealing with,” he thought. “Let’s take care of this and get it out of me.”
Gary was determined throughout his mesothelioma journey, carrying with him motivational catchphrases such as “All is not lost.” “Fear is a liar.” “Don’t give up. You can’t give up.” All he wanted was to get rid of this disease growing inside of him. He didn’t care about anything else. He says the stage of mesothelioma didn’t even matter to him. The only thing that mattered was the fact that he had been diagnosed with mesothelioma, and he needed to get it out if he wanted a fighting chance at living.
He compares the cancer to a fall in the woods and getting a big stick in your arm.
“You don’t just leave it there,” Gary said. “You take it out because it’d feel a lot better if you just got it out.”
After the second thoracentesis, he went home, and his symptoms disappeared. Had doctors not performed a biopsy that day, he may not have been diagnosed when he was, and his mesothelioma could have progressed past the point of treatment. Thankfully, Donna was his biggest advocate, and Gary was diagnosed in the early stages of mesothelioma, which made him a candidate for beneficial treatments.
Gary absolutely believes Donna saved his life. “My wife is my hero,” he said. “She stood up for me when I was too scared to speak for myself.”
Gary’s Exposure to Asbestos: U.S. Coast Guard
Gary served in the United States Coast Guard from 1971-1975, during the last four years of the Vietnam War. During his service, he had no idea about the risks of asbestos, but he did know it was all over his ship.
All the pipes on the ship were wrapped with asbestos, which is an insulant and can prevent heat damage to pipes and other ship parts. The electrical wiring had asbestos cloth coating. The fire suits and fire hoses were insulated with asbestos. Even the bedding, mattresses and pillows were made with asbestos.
The ship he was on was supposed to be built as a 317-foot ship, but due to the steel demand at the time of construction, it was cut down to 255 feet. Despite the change in ship size, the Coast Guard still opted to install a 5-inch gun on the front of the ship, originally intended for the larger ship.
Whenever they had gun drills, they were told to stay off the bulkheads and keep their mouths slightly open. The force of the seismic shock from the firing of the gun was so strong that if they didn’t follow procedures, there was a risk of spine injury or shattering their teeth. When the gun was fired, clouds of asbestos dust formed.
Although the coast guardsmen were following safety protocol by leaving their mouths open slightly, an open mouth can lead to inhaling and swallowing loose asbestos fibers floating in the clouds of dust.
Pursuing VA Benefits
When he was diagnosed with mesothelioma, he learned there were benefits available from the U.S. Department of Veterans Affairs (VA) for veterans with mesothelioma and applied. He worked with Mesothelioma Guide’s Veterans Advocate, Carl Jewett, and says he doesn’t know what he would have done without him.
Carl helped Gary in many ways other than just helping him with his VA claim.
“We would sit on the phone for 30 to 45 minutes, just talking about things and letting him know how I feel,” Gary said. “The one thing he has helped me with and told me I shouldn’t feel guilty about is post-traumatic stress. It’s very real. I have night terrors about my surgery. Everything went well, but, of course, your mind has a different direction to go. It’s very real, and it’s normal.”
It was determined that the majority of his exposure to asbestos occurred while he was serving in the Coast Guard. Despite the confirmation of exposure, his VA claim was denied three times.
But remember, Gary is persistent and never takes no for an answer. With Carl’s help, they were going to succeed.
“If it’s something you believe in, do it,” he said. “Don’t let anybody tell you no.”
Gary persevered and eventually received a 100% disability rating and full compensation from the VA for two years. After two years, his compensation was reduced significantly. Unfortunately, Gary is still fighting with the VA to continue receiving benefits.
Gary’s Mesothelioma Treatment
Doctors recommended Gary begin chemotherapy while they searched for a mesothelioma surgeon to treat him. He and his wife toured a few facilities looking for the best place to receive treatment, and they were put off by the environment of some of the infusion units, feeling they were cold and unwelcoming.
When they finally found a place for treatment – which happened to be the same hospital where he had his two thoracentesis procedures – the aura and bedside manner was a significant deciding factor. Gary heard people laughing and enjoying themselves, which led him to ask a nurse where the infusion unit was.
“We’re in the infusion unit,” the nurse replied, shocking Gary because everyone in the unit was talking across their rooms, watching TV, and enjoying each other’s company. The cold and unwelcoming feeling he felt at other facilities was not how he felt here.
“The nurses at that place weren’t nurses,” Gary said. “They were angels.”
Gary began chemotherapy on December 22, 2014, approximately one month following his diagnosis. His chemotherapy treatment consisted of 8-hour infusions of hydration, cisplatin and pemetrexed (Alimta), which are both platinum chemotherapy drugs, on Monday and Tuesday. Wednesday and Thursday were three hours of hydration in addition to a Granix shot (a treatment to help prevent the duration of low white blood cells caused by cancer and chemotherapy), and Friday he was only given a Granix shot.
He did four rounds of chemotherapy, with one round every three weeks, and says he never got “sick,” thanks to his pre-chemotherapy drugs, but did feel tired. On Saturdays, he typically felt sluggish. On Sundays, he had little energy for any activity. By Monday, though, he was feeling better and usually back to his normal self by Tuesday.
Gary’s chemotherapy treatment was not without hiccups along the way.
After he finished his first round of chemotherapy, doctors had to insert a mediport into his chest, which is an implanted port that allows infusions to flow directly into a large vein in the chest because the veins in his arms couldn’t handle the infusions. A couple of days after the mediport was inserted, he developed a blood clot and was prescribed blood thinners.
During the fourth round of chemotherapy, he began to feel a burning sensation in his chest, and his chest was swelling. Suddenly, he began bleeding from his nose.
Due to the blood clot in his chest, Gary couldn’t be put under anesthesia to remove the mediport. The surgeon had to urgently remove the mediport in his office at the hospital while Gary was still awake. He later learned the mediport was leaking chemotherapy drugs under his skin, which still causes some pain today.
Through it all, though, Gary kept fighting.
He finished his last round of chemotherapy on March 17, 2015, and began to recover and prepare for major surgery to remove the disease he read on his chart: malignant mesothelioma.
Undergoing Mesothelioma Surgery
Gary connected with Dr. Joseph Friedberg, who – at the time – was a thoracic surgeon and mesothelioma specialist at the University of Maryland at Baltimore. He has now moved to Fox Chase Cancer Center at Temple University in Philadelphia. Gary recalls meeting Dr. Friedberg for the first time “was like meeting with an old friend you hadn’t seen in a while.” The comfort clicked instantly with Gary, who remembers feeling so comfortable with Dr. Friedberg that he felt at ease about the road ahead, specifically the success of his surgery and the recovery.
It was determined that the best treatment – post-chemotherapy – for Gary would be a pleural mesothelioma surgery called pleurectomy with decortication. This mesothelioma surgery removes the thin lining of the lungs – called the pleura or pleural lining, which is where pleural mesothelioma tumors form. It’s in this lining where fluid builds up and causes shortness of breath, which was Gary’s initial symptom.
Another benefit of this surgery is it does not involve removing the affected lung. Many experts believe this operation gives patients a better quality of life and an easier recovery.
A month prior to his surgery, Gary got his affairs in order — living wills, DNRs, wills and the executors. He remembers thinking of his wife and stepsons, “I thought that if I didn’t make it through the surgery, for some odd reason, I didn’t want my wife or my two step-sons to be burdened with taking care of everything.”
Although Gary was focused on beating mesothelioma and staying optimistic, he also had to face the harsh reality and possibility of a different outcome.
On April 16, 2015, Dr. Friedberg performed Gary’s pleurectomy with decortication surgery. During the surgery, the medical team had to remove one of Gary’s left ribs to access his left lung, collapse his left lung in order to remove the pleural lining, remove the left lung’s pleural lining, and reinflate the left lung.
After the surgery, Dr. Friedberg came in to talk to Gary and Donna. When asked how it went, Dr. Friedberg said, “It’s as good as it gets.” Puzzled, she and Gary looked at each other, wondering what that could possibly mean, but they realized he was exactly right.
It was, in fact, as good as it gets. This phrase would live on in Gary’s mind, even to this day, and play a major hand in Gary’s shift in his outlook on life.
He spent 11 days in the Shock Trauma Unit following his surgery. He said there was around-the-clock care and so many people checking in on him.
“It’s like an ICU on steroids,” he described. “It wasn’t a pleasant experience, but it was a memorable one.”
After he was released from the hospital, he and his wife were driving home along the harbor in Baltimore, which is the only way out of the city. They saw an old Coast Guard ship, which happened to be the sister ship of Gary’s Coast Guard ship he served on and eventually led to his mesothelioma diagnosis.
For the first two years after his surgery, he and Donna made the drive to Baltimore every three months for Gary’s follow-up scans. After that first time seeing the ship, Gary never looked in its direction again.
Why? He doesn’t want to be reminded anymore than he already is of his cancer – or how he got it – because he is reminded of his mesothelioma every morning when he wakes up.
Residual Effects of Gary’s Chemotherapy and Surgery
Gary still experiences numbness on the left side of his body, and it’s very painful to touch. He also has short-term memory loss and severe numbness in his feet and hands that feels like stabbing pains. He gets odd, painful cramps, causing his feet to contort in weird ways. He uses plastic cups at home to avoid the possibility of dropping a glass when his hands cramp or go numb.
He underwent an electromyography (EMG) test to evaluate his muscle response to a nerve simulation and detect neuromuscular abnormalities. The EMG revealed Gary had severe polyperipheral neuropathy, which is damage to multiple nerves located outside of the brain and spinal cord, such as hands, feet and other body parts. Polyperipheral neuropathy is a side effect of chemotherapy.
But he goes on to say, “I’m here to talk about it. If this is what I’m left with, then it’s not so bad after all.”
His sleep has also been affected. Gary has to sleep on his right side because of the pain from his surgery, which was on the left side of his chest. For a long time post-surgery, Gary wasn’t getting quality sleep very often because he was so uncomfortable in bed, and he would wake up five or six times a night from the pain and discomfort he was left with after surgery.
He went through a sleep study at the VA, and they found his oxygen saturation rate would often drop to 75%, which is dangerously low. He had 55 events per hour where he stopped breathing. Now, he sleeps with a CPAP, and his quality of sleep is much better.
Scar and Pain Interfere with Family Quality Time
His stepsons frequently visited Gary during his mesothelioma journey. His grandson often tagged along, too, and Gary recalls the first time he saw them after his surgery. He had his shirt off because it was more comfortable, and Gary’s grandson wouldn’t let him hold him because “Grampy had a snake on his back,” which was his 12-inch scar from surgery. He put his shirt back on and walked with him hand in hand instead.
Thanks to surgery, Gary can’t lift anything more than 25 pounds because it’s too painful.
As his family grows and more grandchildren are born that he is unable to pick up as they grow older, he is reminded of his mesothelioma. But that is a small price to pay for beating one of the most aggressive and deadliest cancers known to man.
“At least I’m here to see them,” Gary said, “and they’re here to see me.”
A positive side effect of Gary’s surgery was a change in his outlook on life.
Gary Enters Complete Remission
Dr. Friedberg told Gary he was in “complete remission,” meaning there were no signs of his cancer on his scans. When asked how hearing those words felt, Gary remembers feeling guardedly optimistic, saying “I don’t know if that’s a good enough answer.”
It’s an understandable feeling. A mesothelioma diagnosis takes a toll on the patient and their loved ones. Experiencing the ups and downs that come with mesothelioma can naturally cause one to be cautious with their hope.
Gary’s optimism came from being told he was cancer-free. His guardedness came from not knowing if he’d always be that way, but in the end, he was most definitely glad to hear the news.
Gary returns to the hospital, where he received chemotherapy, for routine follow-up scans every three months and always stops by the infusion unit to show the nurses his perfect scans. They were his angels, after all.
One of the nurses who he’s developed a good relationship with even said she would have been upset if he didn’t continue this tradition, evidence that they truly care about their patients and enjoy celebrating their survival milestones.
Gary also keeps in contact with Dr. Friedberg, as they have regular Zoom meetings to go over his scans and catch up. He still describes any meeting with Dr. Friedberg as catching up with an old friend.
After almost two years in remission, Gary had to schedule his 24-month follow-up CT scan. He describes the nervousness and anticipation he felt leading up to his appointment as mentally cruel, especially as he recalls the post-surgery prognosis doctors gave him: 12-21 months.
However, days before Gary’s follow-up scan, his wife, Donna, wanted to buy him new sneakers because he was in need of a new pair. Without hesitation, he asked her to hold off on the sneakers until after he got the results from his scan. Donna didn’t understand why he would ask her to wait. He needed new shoes.
Gary told Donna he wanted her to wait in case his scan results were bad — in case his mesothelioma had returned. Gary didn’t believe he would live long enough to wear the new sneakers his wife wanted to buy him.
The good news is — Gary’s scan was clear, and he could continue to live his life, focusing on the positive. But, this is just one example of the many emotional rollercoasters Gary and his wife have been riding for the last 8 years.
He still makes his best effort to live and appreciate every day like he’s dying, and enjoy everything and everybody like it’s a different and new experience because it is!
Gary considers himself “pretty damn fortunate,” and says “Remember, the cup is half-full, not half-empty. Be optimistic. You have to fight for yourself, tell your caregivers that you love them, and thank them many times for getting you through this.”
Focusing On The Positive
He makes his best effort to maintain a positive outlook every day, and sometimes, he even tries to forget about his fight against mesothelioma. In an effort to avoid the subject, Gary doesn’t use the “c-word” (cancer). He doesn’t watch certain commercials on TV because he doesn’t want to be reminded of it. When people ask what he was sick from, he just says, “I was sick. I don’t use the ‘c-word.’”
The good news is in 2023 he had his 8.5-year CAT scan, and nothing has changed. Gary is still in complete remission, an extraordinary survival milestone for someone who had mesothelioma, and every month and year that passes allows for the optimism to grow.
“Now, life is wonderful,” he said. “It’s like somebody takes the blinders off of you, and you’re able to say, ‘Wow.’ Things stand out to you that you weren’t able to see before.”
Gary enjoys speaking with mesothelioma patients, survivors, their loved ones or caregivers to inspire them and show them there is light at the end of the tunnel, saying, “It’s a club you don’t want to be a part of, but all I’m doing is paying it forward.”
He has found a small community of other veterans with mesothelioma, and they talk on the phone often to catch up and share stories despite never meeting in person. He says you have to be there for them because everyone affected by mesothelioma gives up a lot.
“Fear is a liar. Don’t believe it,” he said. “It’s a worthless emotion. You’re afraid of something that may never happen. You have to be optimistic.”
The Power of His Wife’s Diary
Gary’s wife, Donna, was his primary caregiver and his number-one supporter. Because he knew she experienced his fight against mesothelioma with him, he knows how much she went through.
She drove over an hour each way to be with Gary while he was in the Shock Trauma Unit for 11 days after his surgery, and she took care of him during chemotherapy treatments and helped him recover from surgery.
Donna also kept a diary, from the moment he was diagnosed, of all doctor appointments, treatments and Gary’s daily living. She kept track of every detail throughout his journey.
Gary had the chance to read her diary after he was in remission. He went into his home office to read it alone and came out in tears. He said to Donna, “You went through all of this?”
He remembers feeling so bad that she had to watch him endure the pain and experience the devastation a mesothelioma diagnosis brings to a patient and their loved ones. But Donna felt bad for him because he was the one with mesothelioma, not her.
Through his wife’s diary, Gary was able to better understand her experience, and now he is a big advocate for caregivers.
“They’re the ones who watch it all,” he said. “They see everything.”
Gary believes all caregivers should keep a log of their experience to be able to look back at how far they’ve come and be grateful they’re still here. Things will move fast, and it will seem like a blur, but having the diary to look back on was helpful.
Don’t Be Afraid to Ask Questions
Gary also points out that it’s important to ask questions, and he is grateful his wife was there with him to get answers to their questions. Remember when they had to demand a biopsy? Or when they insisted on getting Gary’s biopsy results immediately instead of waiting a week? That was largely thanks to Gary for his persistence and Donna for being the best caregiver he could ask for.
“The medical professionals are medical professionals, but if it’s an answer you don’t like, ask why,” he said. “Be your own advocate. This changed our lives for the better.”
Negative Experiences Turned to Positive Perspective
Gary says it’s hard to remember what life was like before mesothelioma because everything changed the day he was diagnosed. But he can recall times – before he was diagnosed – when he was in a bad mood after a long day at work or was negative for another reason.
Now, he says he doesn’t have a bad mood. He doesn’t have bad days. It’s just not in his nature anymore. He enjoys the little things in life and is more laidback. He even wakes up in the morning and goes outside to thank God for another beautiful day regardless of the weather.
“Don’t sweat the small stuff,” he said. “I take the time to notice things, like the trees and the different hues of green. It could be raining, snowstorming, hailing, hot as anything or frigid cold. It’s still a wonderful day because you’re here.”
His wife, Donna, has always enjoyed going outside to watch and feed the birds. In the past, before his mesothelioma, Gary asked her why she would feed them because he imagined they would just make a mess all over the driveway and their cars. Now, he joins in, happily. “I’m at peace.”
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