Zakiya Butler has finally begun her much-needed radiation treatment, which she needs to stunt future growth of a tumor that she has been battling since 2017. But the five days per week over six weeks treatment also comes at a cost of $52,000 per session. By Butler's calculation, that works out to a bill of over $1.5 million for 30 treatment sessions.
"I was blown away when I realized how much my bill was! Thank God for insurance and kind and generous people who have made this treatment possible for me," said Butler.
With insurance, Butler is responsible for $500 per proton session plus 20 percent of any additional services.
Butler is just happy to know that her treatments have begun. She received a call from the doctor a few weeks ago urging her to begin treatment after she had expressed to him that her sight was "glossy, like a fog, or light gray curtain over my eyes."
She also said she was seeing a red glow, and that the doctor was not happy.
"He is concerned for my sight," said Butler who is currently in Florida, and in week two of her six-week course of radiation treatment. She will have to be in the United States for 10 weeks.
During treatment with a customized mask over her face, Butler lies on a bed to which she is attached, and a laser beam which is over her is shot into her head for 15 to 20 minutes daily from a cyclotron, which she said has been named Julia.
"The procedure is painless and comfortable - if you don't mind a mask over your face for 15-20 minutes.
[It is also] quiet, though the bed does move and spin so the laser can maneuver and avoid nerves and healthy tissue. The goal is to avoid any long-term side effects as well [and] sight and memory loss."Butler said there are no immediate side effects from the treatment, other than a little lethargy she felt after the first two sessions.
"I feel wonderful and hopeful," she said.
Proton therapy is a type of radiation treatment that uses high-powered energy to treat cancer and some noncancerous tumors.
When she got to the hospital the first day, Butler was told she had to pay her total copay of $15,00 upfront, which she had not been advised of prior. She told them she wasn't in a position to do so. But that her radiation team told her to do the scheduled MRI as it would be hard to get a new appointment, and that they would deal with everything else after.
"By the time my MRI was done, the simulation for the proton therapy had been rescheduled for the next day and I had received an email stating that upper management had given the go-ahead for me to pay per session, which is $500. [Outside what the insurance is covering, I have to pay $500 per proton session plus 20 percent of any additional services like the MRI which I had to pay $800 for."
She also has to pay living expenses while in Florida and cover her expenses at home.
Butler has been battling the tumor since 2017.
Six years ago, Butler sought treatment for a horrible headache; she was referred to a doctor in Miami, Florida. On July 11, 2017, she learned she had an eight-centimeter meningioma growing on the left side of her cranial cavity, rooted behind her left eye.
Although not technically a brain tumor, meningioma is included in the category because it may compress or squeeze the adjacent brain, nerves and vessels.
Butler's tumor was compressing both the brain itself and essential nerves, notably those connected to her left eye.
The "silver lining of the storm cloud" of news for Butler was that the tumor was grade one, and the most benign, noncancerous type of tumor.
Meningioma is also the most common type of tumor that forms in the head.
She traveled on July 12, 2017 for a consultation with the doctor. Fate had it that she lost consciousness on the morning of July 13 the day she was supposed to meet with the doctor, and had to be rushed to the hospital. The doctor had to perform emergency surgery. They removed a significant portion of the tumor but when they got to the root, Butler started to bleed; they cut the surgery short, leaving a piece of the tumor.
Most meningiomas grow very slowly, often over many years, without causing symptoms. Butler's doctors have told her that her tumor has probably been growing since her teenage years, before it was discovered.
Since that surgery, she has had annual monitoring of the remnants of the tumor. It had remained stable with no growth, until earlier in 2022.
When she did her annual MRI, Butler learned that the tumor had doubled in size since 2021. Though nowhere near the size it was in 2017, in its miniature state, it touched delicate nerves, notably the optic nerve behind her left eye, and affected her vision.
Signs and symptoms of meningioma typically begin gradually and may be very subtle at first, according to mayoclinic.org. Depending on where in the brain or, rarely, spine, the tumor is situated, signs and symptoms may include: changes in vision, such as seeing double or blurriness; headaches, especially those that are worse in the morning; hearing loss or ringing in the ears; memory loss; loss of smell; seizures; weakness in your arms or legs; and language difficulty.
It also isn't clear what causes a meningioma. Doctors know that something alters some cells in the meninges to make them multiply out of control, leading to a meningioma tumor.
Risk factors for a meningioma include radiation treatment (radiation therapy that involves radiation to the head may increase the risk of a meningioma), female hormones (meningiomas are more common in women, leading doctors to believe that female hormones may play a role), an inherited nervous system disorder (the rare disorder neurofibromatosis 2 increases the risk of meningioma growth), and obesity (a high body mass index is an established risk factor for many types of cancers, and a higher prevalence of meningiomas among obese people has been observed in several large studies; but the relationship between obesity and meningiomas is not clear).
Butler had successful surgery in 2022 to remove a portion of the meningioma - a tumor that arises from the meninges - the membranes that surround the brain and spinal cord that she had growing on the left side of her cranial cavity, and that was affecting vision in the only eye in which she has sight. Doctors weighed whether she should have radiation treatment. Three months post-surgery, Butler's medical team recommended radiation treatment to stunt the tumor's growth.
What was left of the tumor is touching Butler's pituitary gland, which in turn affected her hormone levels. She has extra testosterone in her system, which has resulted in facial hair growth. Her speech and her memory were also affected and she sometimes has trouble remembering words.
Given the "delicate" area where the remainder of the tumor is located, Butler's doctors recommended proton therapy.
As she continues to battle her medical challenges, Butler said the "journey" has been difficult all around. She hopes the radiation treatment which she is now undergoing will be the end of what she said has been a difficult journey, medically.
Recognizing that she was financially unable to do it on her own, a GoFundMe account was created in August 2022 to assist Butler with her medical expenses. Butler can also be contacted at zakiya.butler@gmail.com.
"After being independent for most of my life, I need help," she previously told The Nassau Guardian.
Butler also took a self-help approach to raising funds by hosting events to raise funds.
Facing medical challenges is nothing new to Butler. She has even described her life as "weird" and a lifetime of issues.
Butler was born with a pigment deficiency which she said almost looks like she had burns. The retina of her right eye detached, mysteriously when she was about seven years old and she had to undergo surgery to have it reattached. Two to three years later, her retina detached again. She said the ophthalmologist told her family not to redo surgery because she was young. Her retina did not reattach and she lost sight in the right eye. She wears a prosthesis.
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