Markets, McDonald's and Mini Progress

Yesterday and today seem like a whirlwind of emotions--no single one staying long enough to adapt to. I think it is a combination of things piling on top of each other. This morning was the second in a row with no hot water. I called down to the front to tell them and somebody was sent up to my room. I quickly discover the water fixer guy must be multi-talented, as he is the same person who cleans my room, picks up my meal tray when I’m done, and comes to inspect my malfunctioning remote control. A smile is his substitute for communication, as he knows not a word of English. He gestures that he’s going to check the water in the bathroom, and comes out shaking his head no to confirm that the water is in fact, not hot. So unhelpful.

In addition to not being able to shower, my Internet was down for a whole night and a good part of the morning. I felt like every tweedle dee and dum in the building attempted to get me back online. They must have plugged in and unplugged my computer 40 times. Eventually, my entourage of tech people who knew nothing except where the plug was located, say they fixed it. I have a good feeling it was coincidental, but it works when I check so I’m happy.

All of this chaos was going on when Dr. Geeta Shroff came in my room, along with the morning shift doctor (who fills her in on every little detail she misses while away). She wanted to review yesterday’s tests with me, tell me a little bit about the next few days, and get me on video for record (of course, on a day where I am unable to shower and probably stained in dust from the city yesterday).

I already knew about the test findings, because when you get something done here, you find out the results on the spot. Before I left home, I had a barrage of tests done to get a baseline before treatment and make certain I was healthy enough to travel. When Dr. Geeta Shroff wants to repeat some of them, I argue gently, but then finally cave.

The first doctor who arrives to perform an ultrasound of my abdomen finds a kidney stone that somehow, the technician in the U.S. missed just weeks before. The second doctor comes later and in 30 seconds discovers why my previously dismissed heart palpitations are so prominent; a mitrovalve prolapse (sounds worse than it is, but that’s not the point). This too was overlooked on an ultrasound I had less than a week before I left. I am shocked (or am I really?) that with the new high-tech equipment at home, they miss things that are picked up here using portable machines that look like they’re from the 40s. The cardiologist doesn’t flinch. He explains that in India, doctors perform tests so they know what to look for when a patient describes their symptoms. Although ultrasound technicians go through training, it’s obviously not as extensive as a physician.

My blood tests had a few hiccups, but Dr. Geeta Shroff said they were mostly good. An MRI of my spine showed no lesions, but a bulging disc in my neck (no wonder it hurts). Physical therapy should help that. My B12 levels are low so they’ll start injections. Thyroid antibodies are indicative of an autoimmune thyroid condition, but she is convinced the stem cells will take care of it. She explains that soon they’ll be administering stem cells through IV. They slowly introduce them with shots, but the IV is a greater concentration (although I don’t know by how much) so I am very excited.

Just minutes after she leaves, an infectious disease doctor from another hospital comes to see me. He is the physician who was at my original consultation. He’s stern and looks like if he laughed at a joke, he might just crack right down the middle and fall into pieces on my floor. He analyzes my medicine and discusses some changes. I feel a rush of anxiety. How am I supposed to know if what he wants to do is ok? I soon realize I can’t know for sure. I'm going to e-mail my ultra smart Lyme doctor at home and see if I can get some insight from him. They are ego-less here and interested in what he thinks would be best.

Although there is very little Lyme Disease in India (only in those who have contracted it in the U.S. or other areas), every doctor at this hospital has educated themselves to an impressive extent about it. They are longing to learn, asking questions, reporting back to me with literature, and digging for answers in their spare time. They constantly come in to tell me new ideas. I am totally in awe. They are concerned with a few of my prescriptions--those that would be unsafe if I were pregnant. I am not supposed to be taking anything that might damage my baby stem cells. I am also advised against taking anything unless completely necessary. The rule of thumb is "don’t take anything unless the damage it would do by not taking it is worse than side effects."

By the time that doctor left, Dr. Ashish continues the parade by following with his entry. He is Dr. Geeta Shroff’s partner and the one who gave me my test dose. I like him so much. He is kind and intelligent. He loves to share information and is a great listener. He knows more about Lyme and its complications than I’d ever expect of someone who didn’t commit full time to it. When he left, it was down to physical therapy where Chavi really had me work today. I was on the verge of tears the whole time as I watched other patients struggle. One loses their balance as he tries to use a walker. A young girl who was shot in the neck can hardly move on her own, but pans the room with her eyes in case she’s missing something. A young guy on my floor uses every ounce of energy to keep his upper body rigid as he attempts to stand. A woman whose spinal cord was severed cries in frustration. My heart breaks and I have to remind myself that everyone is on their own journey--just as it was meant to be. Later, I meet and Indian man at the clinic with his mother. She is diabetic with multi-organ involvement. In just 7 days, she sees improvement in her insulin and in two weeks, she is dramatically better, regaining her eyesight. Her unrelated hearing loss resolves itself. He tells me their story with light in his eyes as he keeps repeating one word: mindboggling. I can't help but agree, and then some.

After physical therapy, I get my morning dose of stem cells and my mom and I head out to a market. The doctors are adamant I stay away from sugar, which means carbs. Sugar feeds the Lyme bacteria, and in a country all about preventative medicine, they stress the importance of diet for disease to the max. I’m supposed to be eating extra to help nourish my stem cells, yet I don’t like anything enough to really ever get full. I have a food emergency that needs immediate rescue attention. Meals here can often closely resemble cat food and I need a few things to keep in my room.

The market is one long street, bustling with energy, little stores and fruit stands. Stray dogs roam and children walk home from school. There is a McDonald’s we can’t resist. They have McVeggie sandwiches here that are delicious. We order it with fries to share and act like it’s the first time we’ve eaten in a year. It feels like it is.

I grab the tray full of food and we walk upstairs to sit when I realize I’m not holding onto the railing...and my food isn’t sliding off! Oh my...I am balancing without drifting to one side like I always do, and have for several years. I am hesitant to believe it is the stem cells but there is no medicine, balance exercises or anything else that has ever been able to control this. The lack of blood flow to my brain is the culprit. I’m elated when I reach the top of the stairs and my food is still safe. I wear a cardboard crown to celebrate, just like I used to when I was little (a fast food chain classic). If it lasts five minutes, I’ll be ecstatic.

After lunch, we shop till we drop (or at least I almost drop). We buy fresh roasted peanuts on the way back from a vendor who looks less than tolerant of his job. My mother is high on the fancy iced coffee drink she just bought for $1 U.S. that puts Starbuck’s to shame. She’s already talking about what market we’ll visit next.

Rest is an important concept here and seems completely overblown by American standards. When I ask the doctor if it’s fine that I go out (after I’ve already gone and come back a million times), he says, “Of course, once or twice a week would be fine.” I envisioned his sentence ending more like, “...in a day.” His version sounds like a jail sentence to me. I guess the markets will have to wait. McDonald’s McDelivery service (yes, it’s true!) will hail me as their best customer while I keep the veggie sandwiches coming.

Tonight I try again and the water is hot. Carpe Diem! I get in, wash my one-day-past-dirty hair and bask in the luxury. I’m always looking for a place to put my foot when I shave and with this odd set-up, the toilet is right there in the shower to be my pedestal. When I realize I actually kinda like this shoilet thing now, I scare even myself. I laugh at the absurdity. Despite the hardships, I’m getting quite comfortable here.

My emotions feel settled for now. Tomorrow is a new day full of new stem cells, new hope and food that I can identify. Could I ask for anything more??

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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