Three weeks post-surgery to remove a tumor that was affecting the only remaining sight she had in her left eye, Zakiya Butler said she was scared going in to surgery, but happy to be alive after the sight-saving surgery.
“I don’t have sight in my right eye. If I lose sight in my left eye, I would be blind. That’s scary,” said Butler, 41. “You think about simple things like work and making money to support your family … watching your kids grow.”
Butler said she can’t imagine a world in which she can’t see these things happening, and that she doesn’t want to live that existence.
The mom of two had successful surgery earlier this month 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 had for the most part removed. The tumor that had regrown was affecting vision in the only eye that she had sight because it was touching her optic nerve. Her doctors told her doing nothing was not an option and that if she did nothing, her sight would get worse.
“The surgery was a success in that the doctor was able to remove the portion of the tumor touching the optic nerve,” said Butler. “Though he wanted to get more of it out, the rest of the tumor is too intertwined with important vessels, arteries, etc., and he preferred not to.”
Butler’s case is currently before the Tumor Board of the University of Miami Hospital to decide if they should move forward with radiation treatment. She has been told there will be many side effects to taking radiation treatment, including the risk of loss of sight in her only remaining sighted eye.
“They didn’t want to do the radiation right away, swelling with radiation further impacts nerves and probably be loss of sight. The surgery created space between the tumor and the nerve, which makes for a better prognosis, but there’s still a chance the optic nerve would be damaged,” said Butler.
If she opts for radiation, the course of treatment is daily for a month. The goal being to stunt the future growth of the tumor.
The alternative is to continue to monitor the tumor as they have been doing.
“Healing has been remarkable and I am simply happy to be alive,” said the mother of two.
The surgery to have a portion of the tumor removed was her second. Butler believes the second surgery was more important than her first surgery.
It was on July 11, 2017, that Butler 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 is that the tumor was grade one, and the most benign, non-cancerous 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, for further treatment. 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 this year.
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 was affecting her vision.
In speaking with her doctors, they have 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.
As she prepares for possible radiation treatment, Butler feels good that she has no medical bills, especially as she’s not able to work and does not have an income.
Coupled with insurance, Butler, knowing that she faced mounting medical bills, took to crowdfunding via GoFundMe to assist with raising funds to help in defraying the cost of her vision-saving operation as well as other recuperation costs.
The mother of two boys raised $14,535 via GoFundMe.
As she faces radiation treatment, she has spoken with her insurance company, who has given her two options – do treatment in the United States at 100 percent coverage, but she has to pay for her own accommodations; or have the treatment at home with her doctors coordinating with local doctors with insurance covering 80 percent. Butler will be responsible for 20 percent of the bill.
She also hosted a steak-out to supplement funds to defray her bills as she fought for her life.
“My fight in life is driven by my desire to raise my sons [Solomon, nine, and Zion, two] and contribute to all that is good in this world,” said Butler.
It also made her realize that she had not known how much it would affect her boys whose wonderful fathers were there for them in her absence.
“I thought they would be OK, especially my two-year-old. I thought he wouldn’t notice I was gone.”
They noticed she was gone. Her youngest doesn’t leave her side. And her oldest, while he puts on a brave front, told her how much he missed her and is free with his hugs and kisses.
“Mentally, it was super tough, not just for me, but my loved ones. Going into surgery, a part of me thought that if I passed away that my boys would be OK. I’ve come to realize it’s kind of important that I be here. They need me to be here.”
As she tries to make up her mind on radiation treatment, Butler said she refuses to think about the future. She said she only thinks about now and that she’s happy to be here.
After her 2017 surgery, she said she was really bad, but that the surgery was more traumatic because they had to touch her brain. The second time around, she said she knew what to expect.
“Sight is impacted. It took almost three months to recover the first time – now I know, so I’m not freaking out as much. Mentally, I’m in a better place.
“I have my loved ones, of course, but I’m still thinking what if the radiation happens, paying for that, and what if I lose my sight. Financially, I’m taking it one day at a time. But I am happy for the support I have had from friends, family, loved ones, and beautiful strangers that have supported me. I’m trying not to worry thinking about the reality of things.”
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 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. She has other issues that she said she has had corrected over the years.
Despite her challenges, Butler told The Nassau Guardian that she gives thanks and praise to God.
“My life has been better because I’ve been motivated to do better because of what I’ve been faced with,” she said.
Her boys, she said, also serve as motivation for her. She has also come to the realization that she has a purpose to help others and is exploring plans to pursue a business around the concept of catering to helping people dealing with medical experiences. A sweet escape, of sorts.
“From my personal experiences, to those of loved ones, I have learned that life is a series of highs and lows. For many, the tough times seem so unbearable that they can’t imagine ever getting through them, much less to better times. The concept behind the sweet escape is to offer individuals the opportunity to ‘escape’ life, via seminars, therapy, travel, etc., with the goal of dealing with and overcoming obstacles they are facing. The physical, emotional, mental and spiritual journey through life’s difficulties is less arduous when support is present. My desire is to help others fight battles that seem insurmountable and to do so in the best way possible. This last experience with brain surgery and recovery has shown me how important it is to have a village of support and to get away from life for a bit in order to fully appreciate living.”
Butler said she wants to build a network that helps people to do just that.