‘I’m not going to cry about this’

Zunaira Khalid (left) and her partner Ebony Bates in their basement apartment in Khalid's parents' house in Chantilly, Va. The couple says they're lucky most of the medical expenses from the June cancer surgery that claimed Khalid's leg were covered by insurance but only a small percentage will be covered for the prosthetic leg Khalid needs. (Washington Blade photo by Joey DiGuglielmo)

Zunaira Khalid benefit

Thursday at Policy

6:30 to 10 p.m.

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Things were going pretty well for Zunaira Khalid and Ebony Bates in December. They’d had rough spots large and small throughout their nine-year relationship such as years of separation while Bates went to college in her native Pennsylvania, some occasional minor clashes that are inevitable in cross-cultural romances and all the usual pings and pangs that come and go as young people figure out what they want and don’t want from life.

But by the end of last year Khalid, a 35-year-old aspiring doctor and native Pakistani Muslim who’s been in the U.S. since age 12, and Bates, a 29-year-old Washington, Pa., native, realized their lives were beginning to jell. In October Bates landed what she calls her “dream job” with a government agency. She declines to say which because she says it’s not terribly gay friendly.

And after years of dabbling in various fields, Khalid, who’d drifted after finishing medical school questioning if she really wanted to be a doctor, decided medicine was her calling and she was in the uphill battle of getting back into the rigors of a residency program. Since 2005, the couple has lived in the basement of Khalid’s parents’ sprawling Chantilly, Va., home.

The two had been without health insurance for years. Bates was in school most of the ’00s doing undergrad and graduate work and Khalid had been unemployed for years studying to pass an exam to get back into medicine. The two had met in 2001 working together at Dulles Airport.

By December, Bates had coverage through her job. It took some arm twisting, but she convinced Khalid they needed to buy her some too, just in case. They found a decent plan for a little more than $100 per month through Aetna Health Insurance, an extraordinarily fortuitous decision on Bates’ part that saved the couple from financial ruin when Khalid got sick in February with an aggressive form of cancer that resulted in her leg having to be amputated in June.

“We were to the point where we’d been committed for several years,” Khalid says. “It’s almost impossible to have any sort of relationship recognition in Virginia, so that was never really discussed, but after D.C. passed marriage in December and then Ebony got a job she was like, ‘Look, we have a little money now, let’s get you a health plan. I didn’t think it was big deal. I don’t really get the flu or anything acute very often. I was like, ‘I’m fine, I don’t need it,’ but she was really adamant.”

To Khalid, she and Bates both burdened with considerable student loan debt, it seemed like one more expense. But she acquiesced and had an exam in December and got a clean bill of health.

The first signs of the cancer came innocuously in February. Khalid noticed her jeans felt tight around her left leg and took a bit of effort to get on. When it persisted, she had it looked at and was diagnosed with a pulled muscle. Just give it time to heal on its own, doctors told her. When it didn’t, she returned and an ultrasound found a cyst growing behind her knee. A biopsy revealed the mass was an aggressive sarcoma that was spreading fast. The situation quickly grew dire. It had grown from the size of a golf ball when an initial ultrasound was done to the size of a baseball a month later when an MRI was performed on Feb. 27.

Doctors told Khalid and Bates they were going to do everything they could to save her life and save her leg. It quickly became clear how potentially serious the diagnosis was.

“I remember when they said they were going to try to save her life first but we can’t guarantee that, that was really jarring for me,” Bates says. “Here they were talking about the possibility of death and if we were lucky she would make it through. It was just a lot of bad news at once.”

Bates, under pressure at her new job and in a probationary period where she knew she had to perform at her best, decided she needed to come out to her boss and explain the situation in case the stress started showing up in her performance. She was only able to miss a few days of work throughout Khalid’s illness, a point that irks the couple who marvel at the provisions that would be available if they were a married, opposite-sex couple.

But the couple opted to focus on the positive — most glaringly that Bates had the foresight to insist on an insurance plan for Khalid.

The first treatment step was two debilitating rounds of chemo, which destroyed Khalid’s immune system and put her in the hospital at Washington Hospital Center in D.C.’s Pleasant Plains neighborhood for weeks at a time. The chemo took such a toll — Khalid’s doctor told her he’d never seen anybody react so aversely to it — that a third round would have been too much for her body to handle. It was also unsuccessful at shrinking the mass to a degree doctors felt was acceptable.

There were essentially three problems with the growth — it had grown around a nerve meaning removing the mass would likely have resulted in Khalid having no control of her leg. Secondly it was so close to the bone, operating would be difficult and would have required, thirdly, a new route for blood supply to the leg, another iffy proposition considering the mass’s location. Amputation became the only safe option.

“I just realized very quickly that was the best decision I could make,” Khalid says. “I’d kind of prepared myself for it emotionally when they first told me it was a possibility. That first weekend, Eb had to be in Pennsylvania for work and I decided to go with her. It was the best thing. She was busy with work stuff but I just shopped, hung out at the hotel and really had time to make my peace with it.”

Bates soldiered on at work and says a strong relationship with Khalid’s parents — she says they treat her as if she, too, were their daughter — helped tremendously.

“Anytime I thought about how hard it was to juggle this with work, I just realized how much easier I had it compared to what she was going through,” Bates says.

Khalid is doing well now. She gets around on a pair of crutches cushioned with zebra-patterned covers. She was up and walking with a walker the day after her surgery. And she can still drive since she only needs to use her right leg.

The pain, though, has been excruciating at times. Muscle in her leg was essentially “wrapped” around hollow bone resulting in cookie-cutter like pressure from the bone’s edges. Khalid also experiences “phantom” pain where it feels as if her leg is still there, causing both pain and itching sensations.

“Basically the nerves have been cut but up here,” she says, pointing to her head, “it thinks everything is normal. So the nerves are freaking out and they don’t know what happened.”

She’s also stumbled several times as she attempts to get around.

The couple’s biggest challenge now is affording a massively expensive prosthetic leg for Khalid. The Aetna plan they chose has been great at kicking in thousands of dollars toward her chemo and surgery expenses but comes up far short on the cost of the prosthesis. The couple says it will cover only about $2,000 of the estimated $40,000 to $45,000 cost.

Friends are rallying. D.C. lesbian event promoter Ebone Bell has set up a website seeking contributions. Another lesbian friend, Darcy O’Callaghan, is planning an event Thursday at Policy for the couple. Donations are being accepted here.

Khalid says she’s keeping the stiff upper lip she’s maintained all along.

“I just decided up front I’m not going to cry about this,” she says. “I refuse to cry and give into this. If I have cried, it hasn’t been because of this stupid cancer, but because I’ve been touched by the things people have done for me.”