Insufficient funds forced Zakiya Butler to have to postpone much-needed radiation treatment which she needs to stunt future growth of a tumor she has been battling since 2017. But Butler said she could not have received better news to jumpstart the year after learning that the $55,000 co-pay she had been quoted for radiation treatment at a Florida medical facility was significantly reduced to $7,500.
Butler's doctors have recommended proton therapy, a type of radiation treatment that uses high-powered energy to treat cancer and some noncancerous tumors.
Butler, who had been scheduled to commence treatment on January 9, described it as "wonderful news". She said including transportation, accommodations and miscellaneous expenses, she only needs approximately $15,000 to cover the cost of her treatment.
"Even with airfare and accommodations for the 10 weeks I have to be abroad, my expenses are cut dramatically. This lighter financial burden definitely relieves some of the stress I've been fighting," said Butler.
Zakiya Butler, with her sons Solomon, 10, and Zion, 2, whom she hopes to have with her for a portion of the 10 weeks she will need to spend in the United States undergoing treatment. She said her absence for two weeks in 2022 proved to be taxing on her boys.
And the good news kept coming when Butler learned that the tumor growing on the left side of her cranial cavity, which is affecting vision in the only eye in which she still has sight, had "only grown a tiny bit", which meant her doctor was comfortable with her opting to push back needed radiation treatment to June, as Butler continues to raise the needed funds to cover her medical expenses.
Opting to push treatment to June, Butler said, will also allow for her children to travel with her for a portion of the 10 weeks that she will need to spend in the United States (US) undergoing treatment.
"My absence for two weeks last year for surgery was very taxing for my boys," she said.
Butler's radiation treatment is anticipated to take place over six weeks, with treatment five days per week for one hour a day. She will have to be in the US for 10 weeks.
Her optimism is boundless for where she is today.
"Physically, my sight and functionality have been improving," said Butler. "I am feeling hopeful and grateful to God and everyone that has assisted and encouraged me on this journey that started almost seven years ago. My prayer is that this season of battle will soon be over and I can claim the victory that has already been promised to me."
She had successful surgery in 2022 to remove a portion of a 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's left of the tumor is touching Butler's pituitary gland, which in turn has affected her hormone levels. She has extra testosterone in her system, which has resulted in facial hair growth. Her speech and her memory have also been affected. 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 her radiation treatment will be the end of what she said has been a difficult journey, medically.
She has insurance, which covers a portion of the procedure, but still needs to cover her co-pay.
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. Her goal was to raise $50,000 to assist with her medical expenses. With the downward adjustment by her medical team, Butler has adjusted her goal down and is now seeking to raise $25,000. To date, she has raised $18,600. The account remains active at https://gofund.me/1650608a. 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 a drive-in movie night. She also plans to host a souse out on Saturday, April 15, to raise funds. She hopes it will be the last fundraiser that she will need to assist with her medical bills.
She has also chopped off her processed hair and embraces her naturalness. She is also off her seizure medications which she said left her feeling lethargic and zombie-like. And eats a healthy diet, including fats great for brain health.
"With the help of my team and a strong spiritual regiment of prayer and Bible study, physical workouts and time with loved ones, I am doing my own self-help best to be 100 percent better," said Butler.
It was on July 11, 2017 that Butler first learned that 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.
Six years ago, Butler sought treatment for a horrible headache; she was referred to a doctor in Miami, Florida. 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, 2017, 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 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.
In speaking with her doctors, they determined her type of tumor is occurring with women, and that they think it's based on pregnancy. They also spoke to her about menopause, and that with menopause, the risk of it growing decreased.
Butler's tumor will have to be monitored through to menopause.
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).
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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