No mention of cell phones as the possible cause
On the first day I learned my husband had brain cancer, I slipped off my sandals and crawled into his hospital bed next to him.
We'd been on the neuro unit for three nights already and I was tired of the hard cushions on the couch that the hospital generously referred to as a "bed" for visitors. Plus, lying next to him, I thought, might help me feel more like myself — like ourselves — on the most disorienting day of our marriage.
The morning brought the visit we were expecting from Grady's neurosurgeon, who had drilled a hole in his skull and carved off a slice of his brain for testing just a few days earlier. The lab report was finally in and the surgeon came to confirm what we suspected — Grady has an aggressive brain tumor that would need a lot more treatment and would change our lives forever.
That visit was followed by a parade of doctors, family members and the well-meaning but ill-timed art therapist who wanted to know if we'd like to create a collage about our feelings.
I started crying not long after she walked in the room and she took that as a no.
Now the late afternoon sun was dipping over the Orlando skyline visible from the 11th story window from the hospital bed. Grady was finally taking a nap.
I laid there, bewildered by the worst to-do list I've ever had to make:
1. Find another hospital to give us a second opinion. Maybe this wasn't cancer after all. (I was still in the shock and disbelief phase.)
2. Make a thousand phone calls to family and friends we wanted to make sure heard the news directly from us.
3. Tell our children that their dad has cancer. We had been counseled and persuaded that honesty with the kids would lay the best foundation for our family to cope. It was the right decision for us. But now Grady and I had to follow through.
4. Make myself an appointment about my ear. It hurt. What I thought had been sinus pressure from an off-and-on head cold was coming back again. Grady has brain cancer and now I have an ear infection, I thought. Just my luck.
I didn't say anything to Grady about item No. 4. Or to our family or friends. My little problem could wait. We had much bigger problems – like how to get Grady out of the hospital and back into something that resembled our lives.
It wasn't until more than a week later that I mentioned my nagging ear. We left the neurosurgeon's office from a quick appointment where a nurse removed the 45 staples from Grady's scalp left there after the brain biopsy.
Then we stopped for a late breakfast on Park Avenue in Winter Park. It happened to be spring break so the schools were closed and our kids were with us. Waffles and a walk around Central Park was my attempt at adding a little fun to our day.
Only I was not very much fun.
The din of the restaurant seemed to magnify a high-pitched hiss in my right ear, which more and more felt like it was filled with water. The hearing in that ear was muffled. Sometimes, for no apparent reason, I would get dizzy.
I couldn't stand it anymore. Even though Grady had just had brain surgery and didn't need even one more thing to worry about, I confessed these symptoms that I had kept to myself.
I couldn't precisely say how long the feeling had been there. It seemed like I had lived with a few symptoms off and on for a while, maybe even a couple of years, and convinced myself it was nothing. Now I couldn't get my mind off of it.
Probably just picked up a bug after spending so much time in the hospital, I reasoned. Or maybe these weird symptoms were another consequence of the stress and fatigue that came with navigating this new life with a cancer diagnosis.
Grady suggested I call an ear, nose and throat doctor just to be sure. So there in the park, as the kids rolled around on the grass and threw all the coins from my wallet into the fountain, I looked up specialists on my phone and started making calls.
Nobody had any openings anytime soon.
More bad luck.
The diagnosis
It would take four months and multiple trips to the doctor to get to the bottom of my ear mystery.
The answer was not sinus pressure. Or an ear infection. It wasn't stress from my overwhelming fear over potentially losing my husband and my kids losing their father – though that could have played a role magnifying my symptoms.
There, plain as day on the computer screen in the ENT's office, was an MRI of my brain taken the week before. A small mass extended ever so slightly into my internal auditory canal.
I had a brain tumor.
My husband was diagnosed in March of 2018 with anaplastic astrocytoma, a high-grade malignant brain tumor. And now, in the middle of July, as he was on his fourth week of daily radiation and chemotherapy, I was also being diagnosed with a brain tumor -- though a very different type.
I remember the doctor handing me a tissue. I remember the disbelief on Grady's face.
We walked out of the doctor's office and got into our car. We sat in silence.
Finally, I think I said something along the lines of "Are you kidding me?" but with an expletive.
We’re talking about a 1 in 10 million kind of thing. You are definitely more likely to get struck by lightning than to have that scenario.
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My neurosurgeon, Dr. Mel Field, later said we are the only husband and wife duo he knows about with primary brain tumors, or tumors that start in the brain, at the same time. Every doctor we asked said the same thing.
Brain tumors are rare but diverse, with more than 100 types. The rate of malignant or cancerous tumors, such as Grady's, is 7.12 per 100,000, according to the Central Brain Tumor Registry of the United States. The rate for benign tumors like mine is higher at 15.91 per 100,000.
What are the chances that both of us would be diagnosed with brain tumors in the same year?
"We're talking about a 1 in 10 million kind of thing," said Field, the surgical director for neuro-oncology at AdventHealth Orlando. "You are definitely more likely to get struck by lightning than to have that scenario."
We should have played the lottery that week.
Instead we felt like we had won the world's crummiest prize. Bad luck times two.
From our parked car, I thought of Dr. Maryam Rahman, Grady's neurosurgeon at UF Health in Gainesville. She had given me her cell phone for emergencies. It never occurred to me that I would be the emergency.
"This is Beth, Grady's wife," I texted. "I typically wouldn't contact you by text, but something has come up and I was wondering if you might have time to talk today? Everything is fine with Grady."
I guess it was the reporter in me. I went straight to an expert.
I read from the radiologist's report on my MRI.
The tumor was described as a meningioma, a typically benign growth on the outer lining of the brain known as the meninges. The little sucker sat behind my ear in my skull base.
Rahman could hear the panic in my voice and tried to offer some reassurance.
"I think your prognosis is probably excellent," she said. "But I need to see your images."
Rahman's words brought a lot of comfort. But I wanted a second source.
After a stop at FedEx to overnight a copy of my MRI disk to Rahman, I made my next call.
Dr. Sherif Makar is Grady's neuro-oncologist at AdventHealth Orlando. He's smart. He's a straight shooter. And he's the kind of compassionate doctor who forms a real connection with his patients.
Makar agreed to see me the next day.
The waiting room at the neuro-oncology clinic was familiar – the friendly faces at the front desk, the television tuned to HGTV, a basket of saltines and graham crackers. I had been there with Grady many times. But now I was filling out the pages of new-patient paperwork about myself.
Makar assured me there were "curative" treatment options for this kind of tumor. He said there was a risk that I could continue to lose hearing in my right ear as a result of the surgery I would need.
I said I didn't care. I told him I just wanted to live so I could be with my family.
Makar said he thought my lack of concern about my hearing was influenced by what Grady and I had been through with his diagnosis.
The conversations about high-grade glioma tumors -- the kind people have heard of because of John McCain, Ted Kennedy or Beau Biden are very different. The treatments, usually surgery followed by radiation and chemotherapy, are much harder. The statistics related to patient survival are much harder. Everything is harder.
Makar and the hospital social worker assigned to brain tumor patients said they would make it their job to care about my hearing and the other potential side effects, such as nerve damage that could leave my face numb or paralyzed.
I left his office feeling relieved about my ear problem. I finally knew it wasn't just a problem in mind, but an actual problem in my head. And I knew it could be treated.
I began to feel more than just relief. I felt grateful.
Long odds
Scientists don't know what causes brain tumors. But none of the doctors we've spoken to think the tumors Grady and I have are connected.
We grew up 1,400 miles apart on opposite ends of the Eastern Seaboard – me in Florida and him in Maine. Neither of us was exposed to medical radiation as a child, the primary known cause of adult brain tumors. We've lived together 14 years with those years split just about evenly between two houses.
A search of medical literature turned up three cases going back to the late 1970s of husbands and wives diagnosed with glioma brain tumors around the same time. Scientists couldn't find a definitive link in any of those cases. But they also questioned the likelihood of such occurrences (in the order of 1 in 185 million) without some yet unknown factor at play.
It’s unlikely the odds of what happened to Grady and me are quite that high. For starters, we have two different tumor types. And what I have, meningioma, is the most common type of brain tumor and more common in women than men.
None of the experts I talked with could say exactly what the chances are that we would both be diagnosed in the same year.
"Theoretically, the chance is not zero," Rahman said. "But it's exquisitely unusual."
She and other scientists say much more research is needed to determine whether any environmental factors might increase the risk of brain tumors. Research about cell phones, for example, hasn't shown a definitive link, but not all scientists are satisfied with the studies. It could take 20 to 30 more years for trends, if there are any, to emerge, Rahman said.
Overall, the rate of malignant brain tumors decreased slightly from 2008 to 2015. But malignant tumors increased slightly from 2000 to 2015 in children as well as in young adults up to age 39, according to the national registry. Some of the increase is, at least in part, the result of the greater availability of MRI machines, often used as a first step in diagnosis.
Patients and doctors are often frustrated by how long it takes for new treatments to emerge. The standard regimen of care for brain cancer, one of the most deadly cancers for children and adults, has not changed in more than 15 years.
Rahman, who in addition to her surgical practice runs a lab at UF that investigates immunotherapy for brain tumors, said she expects the next five years to bring a wave of new clinical trial results and research that could begin to help patients outside of the lab.
"That will really kind of change the landscape," she said.
Good luck or bad
Talk about research can be uplifting to cancer patients.
But it doesn't relieve the burden of living with the disease.
That task is often left to social workers, counselors and clergy, the people who can help patients adjust to a life that will never be the same as it was before the diagnosis and, sometimes, face their own deaths.
They are the ones who talk to crying mothers gripped with fear.
Mothers like me.
Fear and uncertainty are two of the hardest emotions that come with a difficult diagnosis — whether for yourself or a loved one. There can also be shame, even though the diagnosis is no one's fault, and anger, even though there's no one to be mad at.
Talking with a counselor helps me feel supported, which, in turn, helps me be a better support to my family.
We also turned to our pastor and talked about faith.
I learned that it's possible to feel grief and happiness on the same day, even at the same time.
Patients who choose to have better attitudes also have better physical outcomes. There was a clear consensus about that among the doctors I talked with.
For example, a social worker I met who understood the gravity of my diagnosis coupled with my husband's told me, "You're either the unluckiest person in the world or the luckiest."
It was up to me.
I was very unlucky, sure.
I had just turned 40, my husband was 42. Our children were 7 and 9. How unfair that our young family must confront not just one, but two difficult diagnoses within a few months.
Last year brought some rough days. That doesn't go away. Many hard days are ahead.
But today I have a very different list than I did at the start. Things to feel lucky about:
My tumor is benign and treatable. Last year, I underwent GammaKnife "radiosurgery," which isn't really surgery at all, but a precisely targeted beam of radiation to blast the tumor. I feel really good and my doctors tell me chances are good that I'll never have to deal with this again.
Grady recovered from multiple surgeries and blew through his regimen of radiation and the poison pills he had to swallow each night for 42 days in a row last summer. This summer we're going on vacation.
He continues to work full time and will be running (faster than me) this weekend in a race to raise money and awareness for brain cancer.
Our kids are doing great and are preoccupied with the things a 10-year-old and an 8-year-old typically are focused on, such as who is allowed in whose room and who gets to play the Nintendo Switch.
Grady and I are fortunate to have good jobs that gave us paid time off and an excellent health plan. We had access to some of the best doctors, who gave us their time and expertise. Many people don't have health insurance, which can quickly lead to financial ruin.
I've spent many years as a journalist, which left me pretty fearless about asking hard questions and able to distill lots of complicated information. Some people might be understandably intimidated by doctors or simply don't know which questions to ask.
We have family and friends who cooked us dinner and helped fold the laundry. Others might not have a spouse or extended family to lean on.
In many ways, we were a textbook case for exactly how the healthcare system should work. Many Americans are forced to crowd-source their way through medical emergencies. By comparison, Grady and I had it easy.
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