Personal Perspective: Vietnam Vet Fights Myelodysplastic Syndromes To Spend More Time Outside
Published: May 20, 2010 9:19 am
Bob Macfarlane, currently 65 years old, has never been afraid of a good fight.
Whether from his time fighting in the Vietnam War or teaching students the fundamentals of computer science and mathematics over 40 years as an adjunct professor at numerous Florida universities, Macfarlane is a man who is not afraid to confront tough situations. This includes his diagnosis with myelodysplastic syndromes (MDS).
It was May 2001 when Macfarlane’s private doctor first told him there might be something wrong. After running a few tests, the doctor told Macfarlane his blood cells were irregular.
“My red blood cells were the wrong size and the wrong shape,” Macfarlane told The MDS Beacon. Macfarlane’s doctor told him, “I suspect you either have leukemia or MDS,” to which Macfarlane said, “Leukemia doesn’t sound good,” but his doctor said, “It’s better than MDS because they can treat it.”
However, Macfarlane’s oncologist could not make a definitive diagnosis without a bone marrow biopsy, a procedure Macfarlane was skeptical about from the beginning.
Macfarlane recalled saying to his doctor, “Let me get this right: you want to hurt me to satisfy your curiosity?” He declined, deciding to put it off as long as possible. For Macfarlane, that meant four years.
Although he noticed he was becoming more tired, Macfarlane said what really alerted him to the fact that something might be seriously wrong was not a doctor’s visit. Instead, it was when the blood bank would no longer accept his blood. He was told his blood was too anemic.
“That’s not possible,” Macfarlane said. “There’s nothing red and dead that I don’t want to eat.”
Macfarlane has been donating blood since returning from Vietnam, calling himself a “multi-gallon blood donor.” If the blood bank was rejecting his blood, he decided something must really be wrong.
By 2005, his general fatigue had increased enough that ignoring the disease was no longer an option. He finally relented to the biopsy, which confirmed that Macfarlane’s disease was indeed MDS.
Macfarlane took the diagnosis as a challenge.
“My doctor told me I had two to three years to live,” Macfarlane said. “I’m going to prove that he’s a liar.”
With the prospect of fighting MDS looming, Macfarlane decided to move his life and career outdoors. Roughly a year after his diagnosis with MDS, Macfarlane told the university where he was teaching that he was not coming back. He opened a lawn maintenance company instead.
The decision resulted from Macfarlane’s love for the outdoors. “If I had my life to live over again, I would have studied biological sciences instead of mathematics and computer science, and I would have been a game warden because I want to be outdoors,” he said.
Although he enjoyed his lawn maintenance company, his MDS made overseeing the new business nearly impossible. “It’s a bad move when you have MDS. If you’re short of breath, [lawn care] is sort of the wrong business to be in,” Macfarlane admitted.
Luckily, Macfarlane’s younger son came back from Bible College, where he was studying to be a minister, and offered to run the business. Macfarlane did not hesitate. “I said, ‘That’s fine son, I want to go hunting,’ and that’s all I’ve done for the last three years. I was in the woods.”
Macfarlane has also been focusing his energy on his efforts to attain disability benefits for his MDS from the Veteran’s Administration (VA).
Macfarlane volunteered for duty in the Vietnam War in 1965 and served for 13 months as a sergeant for the United States Air Force security service. Macfarlane believes that his MDS was caused by his service in Vietnam and his exposure to the chemical Agent Orange.
Following his diagnosis, he learned while doing research into MDS that there might be a link between Agent Orange exposure and MDS. For MacFarlane, such a correlation is serious, since his exposure to the chemical while in Vietnam was high.
“The marines used Agent Orange all the time to beat back the bush. I was exposed pretty much all the time I was there. When the planes would fly over and spray it on you, you just sort of wiped it off,” Macfarlane said.
When Macfarlane approached the VA with his private oncologist’s diagnosis, the first thing he wanted to know was why his MDS had not been diagnosed sooner. He had been undergoing blood work for four years for his diabetes, but his VA doctor had never mentioned MDS.
Now, Macfarlane is working to obtain VA benefits in a system he calls “arbitrary and very, very random.”
The Board of Veteran Appeals ruled that Macfarlane’s MDS was caused by exposure to Agent Orange during his time in Vietnam. However, Macfarlane’s regional VA office in St. Petersburg, which decides the level of disability to award, ruled that Macfarlane’s disease is only a difficult form of anemia and, therefore, denied him disability.
For Macfarlane, the goal is to get MDS classified as a presumptive disease. Currently, the VA lists a number of diseases as presumptively caused by Agent Orange exposure that automatically entitle a veteran to benefits. However, MDS is not on the list.
However, AMVETS, a partner of the VA, maintains the VA does work to grant benefits to all qualified veterans, but the problem is that in most cases, veterans may not meet the requirements.
“If a veteran meets the requirements, [the VA] grants service connection,” said Denny Boller, a spokesperson for AMVETS. “It’s just that, unfortunately, the current law does not allow the VA to [automatically] grant MDS as service-connected at this time.”
Additionally, illnesses such as MDS occur naturally in a certain percentage of the population, even for those who were not exposed to herbicides like Agent Orange, and this makes the process of determining the cause more complicated, said a media spokesperson for the VA.
Nevertheless, Macfarlane says he will not stop seeking benefits, even in the face of news from his doctor that his MDS shows signs of progressing to chronic myelomonocytic leukemia.
“My hope and my prayer in all of this is not for me to get disability, but for the VA to finally say that this is a presumptive illness from exposure to Agent Orange in Vietnam,” Macfarlane said, “so that those who have come before me and those who come after me will not have to jump through these hoops to get to where I am, at this point.”
Macfarlane is working to appeal his latest denial of disability benefits from the undersecretary of veteran’s benefits in Washington, D.C. Although Macfarlane is frustrated, he remains committed to the fight.
According to Macfarlane, veterans with MDS or any other disease need to remember above all else: tenacity.
“Don’t be afraid who you write to or what you say to them,” Macfarlane advised. “I had bad advice from someone a long time ago who said you have to learn to be nice, and I said ‘No way am I going to be nice about this.’ Go get a private oncologist who is willing to take your side. If you find one who’s unwilling to take your side, go find another one.”
His advice to MDS patients in general is largely the same: Trust your doctor’s advice and stay healthy. Then you have a better chance of fighting this disease.
When asked about his future plans, Macfarlane said, “I’m going to be crazy, I’m going to be happy, and I’m going to hunt. He has applications in to hunt moose in Maine and elk in Kentucky. Macfarlane said that he hopes when MDS finally takes him, he’ll be at the top of a deer stand hunting. He also spends time with his grandson, Judah Ezekiel, whom he lovingly calls Boo Boo. Macfarlane added that in the end, “I am going to live until the day I die,” just like everybody else.
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