As a woman who once held firmly and proudly to her independence, Zakiya Butler said her battle with a brain tumor and having to rely on others in her fight has been "humbling" - this as she made a gut-wrenching update to her crowdfunding page imploring for assistance with at least another $17,000 to ensure that she can continue to receive needed proton therapy treatment to save eyesight in the only eye in which she has sight.
The money breaks down to $10,000 to cover her remaining 15 treatments, $2,000 for housing while in the United States (US) where she had to remain for 10 weeks while receiving treatment, and $5,000 for life expenses.
"I recognize that I need help," said Butler. "As a woman who once held firmly and proudly to my independence, this experience has been humbling.
"I am learning, though, that we are here to aid each other. Loved ones and beautiful strangers, I am calling on you - know that I'm here trying to figure stuff out, too, and not just sitting back waiting to be rescued. I am a fighter, and so motivated to do so, knowing that I am strengthened by Christ."
Because she can't work at the moment, Butler is not earning the revenue she is accustomed to, but her gym remains operational and she has to pay the trainer that is filling in for her.
In an effort to raise funds, she has also tried to lease and sell her home, to no avail, to date.
"I am trying on my side to raise finances and generate income, in general, not only for my medical expenses, but also the usual life expenses. We often don't recognize that life goes on, even when there are things out of our control happening."
Fourteen treatments in, and a course of steroids, Butler said she has seen improvement in her eyesight which she called "remarkable".
"There was like a cloud, so my vision seems clearer."
She said she has also seen improved peripheral vision.
"Seeing anything right or left was cut off, but now it's widened, so my peripheral vision has widened."
Her doctors are setting up an examination to test her vision field.
Butler said the treatments have been going well with no side effects other than lethargy after her initial two treatments.
It was in May that Butler began the much-needed treatment to stunt future growth of a tumor that she has been battling since 2017. The five days per week over six weeks treatment 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.
With insurance, Butler is responsible for $500 per proton session plus 20 percent of any additional services.
Prior to beginning treatment, she said she described sight in her eye as "glossy, like a fog, or light gray curtain over my eyes". She also said she was seeing a red glow.
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.
"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."
Proton therapy is a type of radiation treatment that uses high-powered energy to treat cancer and some noncancerous tumors.
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. 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.
A GoFundMe account was created in August 2022 to assist Butler with her medical expenses. She has raised $22,480 of her $30,000 goal. Butler can also be contacted at zakiya.butler@gmail.com.
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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