Week One Wonders

I rise today with my throat burning from the morning’s pollution, which has seeped in through my windows. I feel like if I were a smoker, I would have had to smoke a pack in an hour to get this intense of a dry burn. It smells like a fire has started under my bed. Even though I know it hasn't, I get up to investigate anyway. I open the hall doorway and it seems I am visibly safe. I have an urge to hold my breath, but I realize quickly, I have to take one eventually. Yesterday's Sunday brought unusually clean air (but only by Delhi standards). Maybe Monday is mad and making up for it. It turns out that it's just getting cooler outside and the people living in tents on my street are burning wood and trash to stay warm. I hereby vow to my friends and family in Southern California that I will never complain of Los Angeles air pollution again. As visions of L.A. run through my head, I start to question if in the big scheme of things, that really should even be considered pollution. I decide the word should be reserved for more severe conditions. Ones like this.

Despite the minor inconvenience of worrying if I’ll breathe freely all day when I often have a hard time anyway, I’m glad Monday is here. Yesterday was emotionally trying. Just being here can be a tear-fest with all that is going on. I will readily admit it doesn’t take much for me to cry some days. Dr. Geeta Shroff had a band downstairs to play for the patients. As everyone sat around listening and singing, I realized the true power of what is going on here. Music can do that – bring out the deepest sadness, hope and triumph.

The band played a mix with the English songs tugging at everyone’s homesick heartstrings. The Indian tunes remind us that we really have traveled so long and hard on faith. “You’re Beautiful” by James Blunt was dedicated to the patients, while my dad and another patient’s daughter ran around performing an entertaining vocal addition to the song for the rest of us. Dr. Geeta Shroff was so impressed that she requested an encore at the end where she first joked into the microphone, “No more making stem cells. Now I can sing.” But then said, “This is for my patients, who are all so beautiful.” Dr. Geeta Shroff sat with us, and held one patient’s hand, as he was having a particularly hard day. He has ALS, a degenerative disease that is terminal. His wife and two young children stood by his wheelchair as he cried. The family has moved to India from Australia and enrolled their children in a British school. Being here and receiving stem cells is the only way he is staying alive and functioning. From what I understand, he had a course of treatment some time ago where he became stable, but when he stopped, he was unable to maintain. I suppose they figured that a life at “home” is worth nothing, if he cannot live. They are the epitome of the concept of family.

Today is my one-week anniversary in India, although my test stem cell dose wasn’t administered until the following day. Tomorrow, the first of my baby stem cells will be seven days old. It’s hard to believe after all the build-up, wondering, packing and planning, that I am really here. Talking to Dr. Ashish yesterday in the lobby, I am more reassured I am in the right place. I was worried about going to a place where they don't know much about Lyme, but I feel secure here. I sent him the information for my doctor at home so he can touch base with him. It's the first thing I noticed about physicians here....it seems they have no ego. If they don't know, they want to learn. When I point it out to them, they don't understand why I'm surprised. If only we all lived that way, the world would be a better place.

My balance is continuing to improve. The other day, my parents and I went to dinner at the Taj Mahal Hotel for a treat we naively call in family code, “real food." The hotel left nothing to be desired, with marble floors, doormen dressed like royalty, and bathrooms that smelled of fresh flowers and fancy soaps. As I washed my hands in this third world country, with the luxury of a first-class restroom, I realize that although I am a traveling soul -- I am still a princess at heart. Over the past several years, I have traveled well and been spoiled with the best of the best. From my Western perspective, India often has the feeling of camping -- inside. I wash fruit by using a baby wipe as a sponge and then rinsing it off with bottled water. Since the shower has no basin, only a drain on the tile floor, I wear flip flops in the bathroom where it's always wet and slippery. I boil water in an electric hot pot and eat the healthy version of cup o soup. Dinner at the hotel gave me a tiny escape from that world. It was just enough for me to relax and regroup. I got to eat a salad that crunched (oh my), and the most delicious prawns ever, flown in from Bombay. From our table, we could see the pool and lawn chairs, which reminded me of Vegas. The front entrance of the Taj hotel has a beautiful set of fancy carpeted stairs. I went up and down as many times as I could, making my mom watch to confirm that I wasn’t tripping or swaying (veering to the left is my signature move). I felt like I was five years old again, excited and proud while trying to coax her away from what she was doing to watch a theatrical performance my friend and I had dreamed up after a “NO more T.V.” rule. Sometimes it’s hard for me to tell if I am feeling the truth so it was nice to have her see. I’m still in disbelief of my almost consistent balance while walking. I want to hum Johnny Cash's "Walk the Line" every time I put one foot in front of the other. If only my legs could hold me longer, I would be a stair stepping fool.

At a time in the month when I am usually glued to my painkillers (because of my hormones and how Lyme Disease roars among those hormones), I realize I have forgotten them several times. They sit in their bottle by my bed but I have reached for them far less than usual. During this time of month, I can be taking four a day and still, horrific stabbing pain floods my entire body. Sunday, one did the trick. I hesitantly kept checking in with my body, as if to say, “Are you sure you’re ok?”

Since I wasn't in too much pain, I seized the day by getting out of the hospital a little bit. I am reminded of all the life around me. Cows graze freely and monkeys can be seen playing or observing the chaos on the streets. The other day we spotted a Muslim group parading their goats with sparkly collars down a busy street. Some designated parking lots here are just for horse parking. Animals are revered. McDonald’s does not serve beef. Pedestrians take their lives in their hands when crossing the street, but the country near stops for a cow.

Man walking cow, or cow walking man?

Cows taking a stroll

Chilin' monkey

A trip to the Dilly Haat market yesterday fed the colorful sights and sounds of India to my body and soul -- the spirit is literally everywhere. It is one of my favorite things about being here. The market was brimming with Eastern handmade crafts, sold from little booths that remind me of a rainbow tinted flea market at home. Huge statues of Hindu Gods and Goddesses were lavish, and stood proudly throughout the market. Ganesha, God of Success, is a staple God (sorry for the ultra American description), with figurines and paraphernalia abound. There is no shortage of the elephant headed God anywhere. I have a little soapstone figurine on my windowsill in my room. One sits in the lobby decorated in flowers and surrounded by twinkling Christmas lights. Another is over by the desk. With the success I have seen in so many patients, it is fitting.

Reclining Ganesha

Hindu Goddess statue

Woman vendor at market

Booth at market selling ceramics

Handmade paper flowers

Today starts a new day of more tests, physical therapy and whatever else it should choose to bring. Just hours after my McVeggie dream sandwich the other night, my neighbor told me McDonald’s burned to the ground in a kitchen fire. So, the hunt for food is on again. But, with the pollution as bad as it is, it might be a day to stay inside.

I’m hoping my balance remains impressive, my pain tolerable, and that soon, I can rule all of the neurology balance tricks doctors use to tell how sick you are. True balance is to be had with your eyes closed, arms out in front of you….and then lifting one leg at a time. I’m not even going to try that yet. Maybe at the two-week mark I’ll see what happens when I close my eyes for a blink. For now, it’s too much to ask of tiny cells. I know they are doing their work and it will take time for me to see full effects. Plus, let’s face it -- performance anxiety is just plain evil. I want them to know their mama plays fair, so I think I’ll give ‘em a little more time to practice.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog