Post by Guest Writer, Angelia Huntley
Angelia Huntley received a Journalism Degree from the University of Nebraska – Lincoln. She’s been published in The Daily Nebraskan newspaper and has written short stories. She is currently working on a full length fictional novel. When not cheering on her Chicago Cubs, playing with her dogs (Roxie and Snickers), or as she says on her Facebook page “trying to save the world one recyclable at a time,” she is traveling the country exploring new restaurants with her spousal equivalent, Gene.
For almost three years Brenda Clifford’s dad, Fred Clifford, had gone to his doctor with complaints about the glands in his neck being swollen. The doctors continued to tell him and his family that nothing was wrong. Brenda said they kept telling us, “It’s just ingrown whiskers, don’t worry about it.”
Yet, after three years they knew something was not right. In 1991, the family decided to get a second opinion. That doctor, Dr. A, took a blood test. Cancer. A scary word that strikes fear into the heart of anyone. But, was there a silver lining?
According to Brenda, the doctor told the family, “If you had to get cancer. This is the best type to get. You will never die from this cancer, you will die from complications.”
At age 55, Fred Clifford was diagnosed with Chronic Lymphocytic Leukemia, or CLL. While no one wants to hear the word cancer, they were relieved to finally know what was happening with their father.
“We’ve been trying to figure this out for three years.” Brenda said. Fred was sent to another doctor. Brenda said this doctor, Dr. M, looked at her dad, almost puzzled. He informed the family that most oncologists don’t send him people that are going to live. He explained that his patients were usually on their last leg. Fred told the doctor that he was already three years behind and they had to catch up.
Like most people who are diagnosed with cancer, Brenda’s dad was treated with chemotherapy, or chemo. According to Chemotherapy.com, “Chemotherapy is a type of treatment that includes a medication or combination of medications to treat cancer. The goal of chemo is to stop or slow the growth of cancer cells.” The website also explained that there are different
ways to receive chemo. It can be given by injection, just under the skin or directly into the muscle; topically, in the form of a cream containing the medication that is rubbed into the skin; intravenously, or orally. Fred was given an oral medication for his chemotherapy. He never lost his hair and he really never suffered from any terrible side effects. In fact, her father always went to his chemo treatments by himself and would return to work the same day.
“Dad only had to get chemo about every three years. We were cruising along thinking everything was great,” Brenda recalled.
In 2006, Fred’s doctor retired. Fred continued treatment with the doctor that had bought his old doctor’s practice. This new doctor, Dr. K, began adding what he called a booster to her father‘s chemo treatments. This was a “chemo cocktail” of Rituxan and Fludara. He explained that it had been effective with other CLL patients.
“We never even asked a question, which was stupid on our part,” Brenda said.
The family just assumed the doctor knew best and just followed doctor’s orders. Fred continued to take his chemo and never miss a day of work. He continued to go to his appointments by himself and then go straight back to work on the farm.
Brenda said it wasn’t long until her father began to experience some strange symptoms. One day, on the way home, her father hit their mailbox. A mailbox he had driven past day after day, for years. They did not think it was a big deal. Just a bad day, they all thought. Then he was writing a check and could not sign his name.
“It was just scary. To see a grown man like that disintegrate…to the point where he couldn’t put his pants on, he couldn’t feed himself, nothing.”
After an appointment with a neurologist, it was discovered parts of Fred’s brain had died. The human body has many built-in defense mechanisms. Our skin is our largest organ and also our largest external defense. But we also have internal defenses, such as the mucus in our nose or the little hairs in our lungs called cilia.
The brain has its own defense. According to the website humanillnesses.com, the brain is equipped with a “Brain-blood barrier, a specialized ’filter’ that surrounds the brain and spinal cord and acts as a physical barrier to keep out proteins, toxins, and most microbes, while letting in glucose, the source of the brain’s nutrients.”
Fred had a virus in his kidneys called the John Cunningham virus, also known as the JC virus. It is actually a very common virus in the U.S. According to healthline.com, between 70 to 90 percent of the world’s population has the virus. Most people will never know they have it or suffer any effects from the virus. The problem arises when the body’s immune system is compromised.
According to healthline.com, “The JC virus can be activated when a person’s immune system is compromised because of disease or immunosuppressive medication. The virus can be carried into the brain, (via the blood stream, through the brain-blood barrier) where it infects the white matter of the brain and attacks the cells responsible for making myelin, the protective coating that covers and protects nerve cells. This infection is called progressive multifocal leukoencephalopathy or PML.”
Fred was the first patient in Indiana to be diagnosed with PML. It seemed that there was not a doctor in Indiana knew how to deal with it. They tried doctors in Indianapolis, Evansville, Goshen, all over the state. No one knew anything about the virus or how to help. Being the first person to be diagnosed with PML in Indiana, everyone was at a loss. They told him he had six weeks to live.
“We didn’t like that answer,” Brenda stated.
Brenda’s family began to research on their own.
“You’ve got to be your own advocate. It’s a must. The problem is, that most people, when they hear they have cancer, you don’t hear anything else. And you take somebody that’s a loved one with you, and they don’t hear anything else.”
It is a normal human emotional reaction. When you hear the word Cancer, you don’t hear anything else. Brenda explains that you may pick up on a few things, like a few directions, or a few suggestions, but mostly, your brain shuts down. She suggests that you should always take a third party with you. The person should be emotionally involved, but be able to absorb the information and think through the process, perhaps even take notes for the patient and the family.
Since no one in Indiana could help the family, Brenda’s sister, Teresa, turned to the internet to find the best doctor to deal with PML. Teresa found Dr. David Clifford (no relation) at Washington University in St. Louis.
They had done their research this time. They tried to read everything the doctor had written about PML. This time they knew what questions to ask. Teresa gave the doctor a call. She explained the situation to him. She told the doctor that her dad was diagnosed with PML, and no one could help them because they don’t know what to do, their doctors had never treated a patient with PML. She simply asked, “Can we come there and see you?”
The doctor told the family that he mostly worked with AIDS patients in Africa, and that usually by the time you know you have PML, it’s too late. He also told them that he had cured two people with medications. He said one had since died and the other was in a vegetative state. That was the best he could offer.
The family felt they needed to take the chance. They had to rent a medical van because Fred could no longer sit up. Brenda said Dr. Clifford told the family that he gave his other patients two Remeron pills a day and he would give her father four. She said that Fred had been given six weeks to live, so what did he have to lose?
The medication stopped the progress of the PML, and within weeks her father began to improve. The first sign, he could hold a spoon again. At the age of 70, Fred had to do rehabilitation to learn how to walk and do other everyday things.
In the meantime, Brenda says no oncologist in Ft. Wayne would accept her father as a patient. They did not know or understand PML or how to address it in conjunction with the cancer treatment. They eventually found Dr. John Byrd of the Ohio State University James Cancer Center as well as a clinical trial for CLL patients. Initially, the medication on the first clinical trial treatments worked for close to 9 months, but then was no longer effective. This is not unusual. Fred was placed in a second clinical trial with a different medication. It worked for about a year and a half. He is currently participating in his fifth trial and medication. IT has worked well for the past five years.
Brenda said there were many and numerous hoops they had to jump through and mountains of paperwork and questions to answer. In order to qualify for the trial, Fred had to go through Chemo, once again, and prove it was not working. The medication he takes for the cancer is considered the second treatment. She said the pill is an inhibitor rather than chemo. According to the website www.cancer.gov, an inhibitor is a drug or another substance that can “block the growth and spread of cancer by interfering with specific molecules that are involved in the growth, progression, and spread of cancer.” Brenda further explained that the pills were not initially created for the treatment of cancer, so it consequently sat on the shelf for 10 years. Brenda said the doctors have claimed, of 900 people in trial for Ibrutinib, not one in the trial has rejected it.
Brenda and her family love the Ohio State staff and facility. They are very appreciative of the clinical trial that has been so successful for their father.
“The people over there don’t care what you have. They’re gonna find something that works. And they’re gonna try and try and try until they do.“
Brenda wants people that are diagnosed with cancer to know that if a doctor tells you they can just make you comfortable, you have to find someone else and find somewhere else to be seen. Teresa added that you have to keep trying. You have to find someone who is willing to listen and fight for you or your loved one.
There were a lot of questions the family did not ask, things they did not know to ask about. For example, during the trials, the insurance paid for their lodging.
“We didn’t stay in a five star hotel. But you stayed in some place that was safe and was good.”
They also paid for partial travel, like mileage. They discovered it because the nurse asked them if they were turning in their miles.
“We didn’t even know to ask. One of the nurses said something, we had no idea. It’s just amazing how hard of a job it is to find all the answers. We didn’t know what questions to ask. We didn’t know to ask about, you know, can somebody help us pay for this?”
Treatment and medication can be obscenely expensive. Just for one treatment that her dad has to go through to boost his immune system, it takes 3-4 hours and it costs $17,000.
“Who could do that? Nobody.”
Ohio State pays for it as part of the trial. Some pills that he takes costs $95 a pill, and he takes six a day.
“With dad, we decided that were gonna live every day, but we also need to know what’s gonna happen in the future. It‘s everyday having to look at the big picture. You really don’t want to. You know, because the big picture‘s scary.”
“Trying to live your life like you don’t have cancer, and then live your life like you have cancer and then, you know, looking into the future trying to find answers to questions you don’t even know are out there yet, it’s a full time job, it really is.”
Brenda wants people to learn from her and her family’s experiences. She wants people to ask questions. She wants people to know that you have more options and you have to find them. Be your own advocate. A lot of people just follow doctor’s orders, no questions asked.
“Suppose you don’t.” “Personally, anymore, if I would go to the doctor and they would say, ‘Brenda, you have X, and this is what we are gonna do for it,’ I would say, ‘OK, but what else? What else is there? What else can we do? Where’s the specialty for this at? And can I go there?’” There may not be specialists in your area, but there are a lot of specialty hospitals and clinical trials out there that people may not know about. She emphasizes that they are under used because people just don’t know about them and, or, think they cannot afford it.
“I don’t think most people know that you have options. Just because your doctor tells you (that) you have to do this, doesn’t mean you have to do it. You’re always allowed to ask questions. Which most people don’t.”
She said you cannot trust that your doctor has looked at every option. There is not enough time in the day.
“Don’t just take somebody’s word for it. You need to cover all your options. And, a lot of people don’t realize you have options.”
She also suggests you should have someone take notes. And ask a lot of questions. Ask more than once, what else can you do.
“It’s discouraging to think that our healthcare system doesn’t say ‘you have this disease, here’s the best place to go. And here’s the experts. Here‘s the list of people that are gonna be your best allies.’ Because you have to find them on your own.”
She admits that it takes a lot of work and it is a lot of stress on your family. She also points out that there is a big difference between going to a teaching facility where they are trying to cure or find a cure for something instead of just simply keeping you alive. She states, that when the doctors are just trying to keep you alive, they are just keeping you comfortable. There is no goal beyond that.
She adds, “Dad was supposed to be dead. Now he can drive.”
The doctor told him he had six weeks to live and the family could not accept that. They simply took matters into their own hands.
“We Googled it, and called (the doctor) up. And our dad is still alive.”