by Amy B. Scher
I am not sure what to do with my first empty moments here, worried that if I stop for too long to think, I will be afraid. I feel like I should be freaking out, but I am somehow okay. I feel like being somewhere new gives me something new. Refreshed optimism, perhaps. Or maybe it will ultimately be only a distraction from the inevitable—that I can’t be cured.
The wailing from the dogs outside begins to grow louder and then retreats. I finally dig my crumpled pajamas from my suitcase and huddle in the bathroom to change, not confident that my room is totally private from the outside world. The morning is soon approaching, and if this bed feels as uncomfortable to sleep in as it is to sit on, it might come much too soon.
Unpacking my medications, I quickly cover the night table next to my bed. I can only fit on it some of what I need to tend to my high-maintenance body. I have various kinds of oral antibiotics that I take for the Lyme disease. I have a whole set of medications for the coinfections—additional infections from ticks that often come along with Lyme disease. I have good-bacteria probiotic pills to try to cancel out damage from the antibiotics, and supplements that help my liver detox. I have gallbladder pills to prevent gallstones—a side effect of one of the drugs. I have antacids to offset the gallbladder medication and a special drink to help flush my kidneys. I have horse-pill-sized vitamins for when I can’t eat. I have needles, syringes, and vials of antibiotic powder that need to be mixed with lidocaine for my injectables. All of this, to try to stay ahead of the Lyme disease and its symptoms, is a process reminiscent of the Whac-A-Mole game of my youth. As soon as I smack down one pop-up monster infection, virus, set of symptoms, or endangered organ, another appears out of nowhere. This is my life, a constant monster-smacking mess—so confusing and exhausting that I have spreadsheets to help me keep track of symptoms, dates, and intensity so I can accurately relay everything to my doctors. I think it’s pretty clear that the monsters have the upper hand.
As I sit on the bed in a cross-legged position and ten thousand miles away from home, with everything at stake, the feeling I had when I made the decision to come here returns to me. I need India. I still feel this truth in my bones. But all the reasons I think I need India will turn out not to be any kind of truth at all. India, with all its guts and glory, will take me, overtake me, undertake me, and painstakingly spit me out. It turns out that India will also love me, care for me, and cradle me in ways so magnificent it will be worth every mile.
2
Holy Cow
WEEK ONE
“Wait till you go out there, baby,” my dad says, out of breath, eyes full of sheer amazement.
My parents have just walked the two blocks from their hotel right off the busy main drag, and into the safety of the hospital lobby. Daylight has brought not only them to me, but the blank page of the first day in my new world.
“Oh boy!” my mom follows cheerfully. “I’m shvitzing from crossing that main road! It’s nuts!” Despite it being the Indian winter now, an average of about fifty degrees Fahrenheit, she is indeed sweating. In one sentence, my mom has brought New York to India.
The hospital is located in Green Park, sometimes referred to as the lungs of Delhi, because it is near one of the largest green areas in the city. But I see nothing green here. While Green Park was described to me as a posh area of the city, it so far feels more like an area of LA that tourists are warned to stay away from. There is trash every single place I look. Instead of there being bins, garbage is piled up on the curbs—except there isn’t even really a curb. From my own wide gaze out the giant glass windows, which reach from top to bottom at the front of the building, I can see why Mom and Dad are so discombobulated. It’s a perfect view into total disarray. A cow is stopped in the middle of the road and halting traffic; people are stuck in the three-wheeled taxis known as tuk-tuks waiting for the cow to move; families of four are stacked on motorcycles whizzing by the tuk-tuks; groups of men use brooms to sweep up tornadoes of dirt caused by the motorcycles; and a monkey in a dress is running in the center divider alarmed by it all. Yes, a monkey. In a dress. We’re definitely not in La La land anymore.
Inside the lobby, there is loud buzzing and chattering that you’d expect from any busy medical clinic. Patients are checking in and out at the reception desk, sharing their latest improvements with each other and squealing with excitement. Locals pour in from surrounding neighborhoods. Dr. Shroff treats many of the children for free—some with physical challenges, others with autism and neurological issues. The only patients who are living at the hospital during their treatments are foreigners, like me, who have traveled from other countries—Dubai, Australia, England, New Zealand, and America. Although I did hear that a patient from Florida flew here in his own jet and is staying at the decadent five-star Taj Palace Hotel.
Nutech Mediworld in Green Park is Dr. Shroff’s second hospital and opened only this year. Dr. Shroff began her career as an infertility specialist at her original location, in Gautam Nagar, another area of South Delhi that is about ten minutes away. But when she developed her stem cell technology and started treating local patients, word spread and demand grew. To accommodate the onslaught of new international patients, she opened this second hospital, in a newer, more desirable building and location.
I am one of the most able-bodied people at this hospital. The majority of patients have spinal cord injuries and are confined to wheelchairs. I almost feel guilty that I can walk with no assistance, albeit some rocky maneuvering.
Before I can process too much of what I’m seeing, I spot the infamous Dr. Shroff. She is strolling our way in flowing, gauzy clothes, beaming with serenity, in no rush to reach our stuck-together family. She’s a mix of saint and rock star—Mother Teresa and Mick Jagger rolled into one. She spells BOSS. Dr. Shroff’s very presence demands attention, which she seems completely unaware of. She’s turning from side to side, observing peripherally. Her smooth black bob-cut hair is bouncing as she glides in pointed-toe shoes adorned with multicolored beads and sequins. She looks like she’s walking down a runway. I’ve been waiting to meet her for so many months, but suddenly I can’t adjust to the reality of it before she reaches us. She is one of the most controversial doctors in the world: to some, a miracle worker, and to others, a peddler of snake oil. She is the last doctor on earth who I believe can help me.
With each new possible treatment or doctor, I’ve wrestled not only with conflicting opinions but also with my inner voice. I am scared to use my intuition, because I usually can’t hear it telling me anything at all, and when I have, it’s often been wrong; but I’m equally scared to make random guesses. Choosing to travel here could easily turn out to be my worst decision ever. There are too many reasons to count as to why this might end up being true. But I’ll start with this: I am the first Lyme disease patient ever to be treated at this clinic. When I told my Lyme disease specialist at home that I was going to do this, he bit his lip and said, totally straight-faced, “I hope it doesn’t kill you.”
Doctors in America who specialize in Lyme disease couldn’t cure me, and here I am hoping a doctor who has never treated someone with this disease can. I feel the failure of this plan drop in my stomach and smash into pieces.
“Hello,” Dr. Shroff says quickly, approaching with a smile. “Please come.” Many people here, including some of the hospital staff, don’t speak English. Dr. Shroff’s is near perfect. She motions down the hall toward her office, and we all follow. We take our seats; I immediately sink deep into the chair cushion and feel it cradle me. Sitting down with Dr. Shroff is only a moment in time, but it weighs a million pounds. If I have led myself to the wrong place, a dangerous place, then there is really nothing left I can trust anymore. This time is different than all that has come before with doctors and treatments galore. There is more at stake—hope, finances, and, dare I say, my ego. I have agreed to blog about my trip on a health-care website that I’ve occasionally written for. This will make any potential win—or fail—a public spectacle. The
pressure of it all suddenly feels insurmountable.
Dad is slightly reclined in his chair. Against his stomach, he is holding a Hindi newspaper that he can’t read. He has an insatiable curiosity. He loves people. He loves life. He is epically jolly. Except for when he’s not.
When I was ten years old, my mom’s dad—my poppy—was dying, and my parents said: “We are going to the hospital to say good-bye now.” We piled into our dark blue oversize van with two rotating captain’s chair seats, which my siblings and I fought over incessantly, and we set off for the good-bye. The navy velvet interior of the van made it feel like the funeral had already started, and I think it had, because Poppy was gone in a matter of days after that. It was not too long after Poppy died that my dad got sick. Or maybe depressed. No one ever really figured it out. He was so fatigued that he slept for days. He began to have episodes where he cried loudly and inconsolably out of the blue. None of it made any sense. He would be perfectly fine, the best dad in the world, telling his jokes, being my pillar of comfort—and then in a flash, his eyes would glaze over and he’d have to go to bed. Sometimes after only a few hours, and sometimes after long, sad weeks, he would spontaneously return to pure joy—a buoy in hopeless, rough seas—and he was back.
The episodes remain a mystery with no cause for their baffling arrivals or unpredictable departures. Over the years, doctors tested every possible diagnosis, checking them off the list one by one: bipolar disorder, depression, PTSD, chronic fatigue. All the doctors agreed to disagree. There were many theories, but no one could give us a definitive answer. Our family does the best we can to bounce with the ups and downs. But here, seeing the light in his face, his eagerness for life emanating from his entire being, I still find myself wondering, as if it’s brand new, how it’s even possible for someone so high on life to hit extremes so low. I’ve learned to go with what’s here today, though, and today he is good. Mom is sitting beside him, looking his way excitedly, and waiting for Dr. Shroff to kick off our meeting—the best sport ever.
“Welcome,” Dr. Shroff starts, through her friendly, fluorescent-pink-lipsticked grin. She is in her late forties, beautiful in a striking way, with giant brown sparkly eyes. After a long, silent smile, she gets straight to business.
Dr. Shroff is a bundle of contradictions, both everything and nothing of what I expected. She is sweet and kind, but blunt and precise with her words.
“Everything we do must be documented,” she says, thumbing through my medical records.
In one of my many e-mail exchanges with Dr. Shroff, she explained that the Indian Health Council only allows her to treat patients labeled incurable or terminally ill. Her patent-pending stem cell treatment has not gone through the testing and government approval that would make it widely available. Because of this, it carries great risks. For now, only those who cannot be cured by any other means are accepted. Lyme disease, at this stage, and in my case, is considered incurable. I am a person who the government says can take the risk. They agree—I am screwed, and therefore, government-approved stem cell worthy.
Stem cells are a special type of undifferentiated cells, meaning they have the potential to develop into many different types of cells in the body—to make muscles, organs, and more. They could be considered the “wild card” of cells, as they are so versatile. They continue to divide inside the body, providing an internal repair system for damaged cells. I need these cells and am relieved to be incurable, because that’s the only way I can get them. A ridiculous oxymoron.
“There is no Lyme disease in India,” Dr. Shroff says, “but I did have one Indian patient who had it. He probably contracted it in the US.” I wonder how this patient with Lyme is doing, if he or she is even still alive, but I decide against digging further. “Let’s just see what happens with you,” she says nonchalantly. My chest tenses at the reminder that Dr. Shroff might not know what she is doing with me. Mom, Dad, and I made an agreement before we left home, that if something didn’t feel right when we got here, we’d leave. I wonder if either of them is going to stand up now.
“We will get our own baseline and then compare later,” she says. Dad chimes in and jokes, “You need proof for your critics, right?” She smirks and looks up. “Oh, the world is my critic.” Based on my research about her, this is accurate. The scientific community around the globe is scrutinizing her.
“Nobody believes what I’m doing is real,” Dr. Shroff says, leading the conversation toward the specifics of her unique technique. “Just because they don’t know how I am doing this, they think it cannot be done.”
First, Dr. Shroff explains that her cells are pure human embryonic stem cells, meaning that there are no animal products used in her process. This is an anomaly in the world of stem cell technology. “None of my patients have shown any adverse side effects because it is pure,” Dr. Shroff says. I both like this and am suspicious of it as well, because based on my past experience, the promise of no side effects sounds impossible. Next, Dr. Shroff claims she is creating her stem cell lines in a way that no other scientist has been able to replicate: she is using and reusing a single embryo to create enough stem cell lines to treat hundreds of patients. “I only use one embryo for all,” she states with confidence, her pointer finger proudly displayed. Her technology involves using an original donated embryo over and over in its current phase, never destroying anything at all. “This embryo was given by a generous woman, who after conceiving her two children via IVF wanted to help others,” she adds.
Embryonic stem cells are a very controversial subject on their own, but add an Indian female doctor who says she’s doing something in a way that other scientists can’t figure out, and you have a firestorm.
When the average person thinks about embryonic stem cells, their brain may conjure up scary images of aborted fetuses, political protests, and religious arguments. But this is nowhere close to the reality of it. An embryo at the early stage during which stem cells are extracted is scientifically known as a blastocyst, which is only a few cells. The blastocyst is approximately 0.1 to 0.2 millimeters, the size of the period at the end of this sentence. Yes, that sentence you just read.
Unused embryos are discarded every day in fertility clinics. Britain’s Human Fertilisation and Embryology Authority (HFEA), which has recorded IVF processes since 1991, estimates 1.7 million embryos have been discarded thus far.
Scientists around the world warn that the biggest risk associated with embryonic stem cells is teratomas—noncancerous tumors made up of tissues such as hair, teeth, muscle, and bone. I have to ask her about this, even though I’ve read online that she says this is not a risk with her patients. Still, I do it fearfully, petrified of her response. If I don’t like the answer (I mean, teeth and bones?!), will I leave? I am trying to be responsible by being smart and assertive, but the truth is that I don’t think anything she would say could change my mind right now. Okay, except maybe teeth and bones!
“I’ve read that because of how you process the stem cells, there is no risk of teratoma tumors, right?” I squish my face in hope. “I keep reading warnings about them and I just want to—”
She jumps in quickly. “This risk is not so with my cells. These scientists are using mice for testing. They cannot know what happens in a human. How can they?” I don’t know and don’t answer. “By mixing embryonic stem cells with the genetics of a mouse, they are doing something unnatural. This is setting off the wrong reaction. The same would happen if we put mouse cells into our human bodies.” She reminds us that her stem cells are a purely human product, which is being transplanted into humans—and therefore, the body accepts it. Our conversation about mice and experiments feels ironic, because I seem like the real lab rat right now. But her explanation makes logical sense, so I let it go.
Next we talk about exactly how the stem cells might help me. The idea behind the treatment is two-part. By strengthening my immune system, Dr. Shroff predicts my body will finally be able to fight some of whatever infection I stil
l have left, on its own. Up until now, my immune system has been so degenerated that it’s all been up to the various medications. The new stem cells will also help to reverse the years of damage done to my body from the Lyme disease: damaged nerves, tissues, organs, and more. But this is all theoretical, based on what we know stem cells can do. We don’t know what they actually will do. I am reminded of the words from my Lyme specialist now: “I hope it doesn’t kill you.” Dr. Shroff explains that the stem cells will keep developing, and working, for up to five years. So she says that even if I don’t see immediate improvement, there is still hope to look forward to. I am not sure how to interpret this—should I feel freed of some pressure to show immediate improvement, or worried that she is relieving herself of some responsibility? “There are no guarantees,” she says, and then moves on swiftly.
“Okay then. You will need tests so I get my own baseline. I do understand you’ve been tested thoroughly at home, but we’ll do them again. We’ll get those scheduled in the next days.” Dr. Shroff shows me a list of about fifteen tests, among them a spinal MRI, various blood tests including some special immune-function ones my doctor at home does, a “Doppler” (a.k.a. ultrasound) of my legs, a mammogram, and the list goes on. For the $30,000 I wired to her for the treatment—which, by the way, was the most frightening banking experience of my life—I get room and board at the hospital and all treatment included. Tests are extra. But I am comforted to find out that all the tests will amount to just $1,000. At home, an MRI alone is $2,500. I cannot believe the difference. While these costs may seem astronomical to those who aren’t stuck in the loop of the medical system, to me, they are a bargain. Even the $30,000 is a deal if it works. Each year, my family has struggled to pay the gargantuan price tag associated with Lyme disease treatment, which is often not covered by health insurance. If this is the last year we have to do that, I’ve just hit the jackpot.
