Update 08

The Disappearing Rat
After days and days of endless guessing, boarding up walls and strategizing, I am pleased to announce that the terrorist rat invading my space has finally been caught. Thankfully for myself and those who have to watch me emotionally overreact to almost everything, it was captured with a humane cage in where it proved that all people and animals have at least one thing in common: we can’t resist a good piece of cheese. Since then, the hospital has been sealed up at the critter’s entry and I haven’t heard a scratch, a squeak or a squeal in three days. I finally resumed sleeping in my room at night and no longer feel like an exiled husband who said something stupid to his wife (again) and is forced to take up residency in the guest room.

New Year’s Eve
New Year’s Eve was humbling, homesick and fun all at the same time. In an attempt to make the night feel somewhat different than all our other nights, the patients and families gathered together down in the lobby. My Jewish parents, who couldn’t bear the thought of anyone being less than satisfied for dinner on a holiday, ventured out into the city and picked up pizza, pasta and salad. The Big Chill, a restaurant serving American-ish food (nothing is really “American” here), was the perfect choice. The hit however, was not the hoards of food that we polished off, but the delectable dessert that came after. We learned quickly that when you can’t have the comforts of home, cheesecake is a good substitute. Sixteen of us sat full and happy after the grub sharing stories from around the world. A mother from London proudly re-enacted how her two-year-old spoke a complete sentence over the phone that day. A retired police officer from New Jersey gave us tips on how to get out of a speeding ticket (first rule -- always admit you did it and apologize). There are patients from Pakistan, Singapore, Australia and the list goes on. We told jokes, made toasts and each went back to our room long before midnight. The ball in Time Square wouldn’t drop for us until the next day at 10:30 a.m. In that, was a little piece of luxury as there was no pressure to stay awake....and we didn’t miss a thing! I was up at midnight and long after, thanks to the celebrating city. If this hospital were an office building, my room would be the boss’s suite -- corner of the building, two walls of windows and a view of all the action. It was a sea of fireworks in the sky, but the smog was so thick, I couldn’t make out anything except the brightly lit temple down the street. Dogs howled, people screamed and from my prime spot, I welcomed 2008 (and blew kisses goodbye to an at-times horrendously difficult 2007).

Temple I can see from my window

It seemed just as the new year arrived, so did the chill in the air. Chavi told me that yesterday was the coldest it’s been here in six years. It still doesn’t come close to beating out the east coast or anything close, but the change is especially apparent at night when we are reminded by drafts leaking into the rooms, how differently the buildings here are sealed (or not sealed). As much as they try to accommodate people from all cultures and classes, India is flat out and no exceptions, not for wussies.

Changes and progress
Aside from the bummer of my IV antibiotics that make me feel as if I’m dragging around an entire extra person on my back, I feel change happening. My pain is less overall and I’ve been able to decrease my pain medication ever so slightly (by a half a pill per day). I’ve also been able to decrease my sleeping medication and even with that, am slumbering more soundly. Chavi came and measured my muscles today and excitedly announced that my thighs have gotten bigger. Now, this (as you can imagine) is a woman’s worst nightmare. However, I know I haven’t gained a pound, so it has to be my muscle. Oh yeah, and I’m assuming they know enough to differentiate what’s growing. She asks me if I can tell I’ve firmed up, and before I decide it’s supposed to be a compliment, I say, “Yes, I have” almost in defense. If someone tells you your thighs have plumped up, you aren’t about to deny they are tighter too (you know, especially if suggested). But in all fairness, she is right. I’m feeling stronger, more toned and less wobbly each day (with the exception of every five days when I have to take an anti-malaria pill which makes me dizzy). If big thighs are a side effect, bring ‘em on.

About every 10th day, I receive high doses of stem cells via IV drip for two days consecutively. A saline bottle with baby stem cells hangs by my bed. It takes about 20 minutes to infuse. I just got my second set that was delivered like an unexpected gift on New Year’s Eve. Just like last time, the large concentration of cells circulating through my body in a short period of time, stimulated my immune and nervous systems. Within two hours, I had a feverish feeling and more severe than normal body aches. Every inch of me felt like it was throwing a fit. When I used to receive immune globulin intravenously (given to immune deficient patients), the same exact thing would happen. My neurologist was always excited as this meant the treatment was working. In these cases, no change is worse than some change, even if it doesn't seem positive. So, I try to act happy as I roll around in my bed suppressing the moaning and groaning person I feel like inside. If the saying, “Pain is a gift” is true, I keep telling myself I am rich! The doctors here confirm that what I’m feeling is my sleepy immune system being kick-started and my ornery nervous system being corrected. The intramuscular stem cell shots often cause twitching in whatever leg or arm they administer it in and I sit and watch in awe. After years of shots and IVs, I know it’s not just a simple reaction from being stuck with a needle there. It’s something working and is way more entertaining than any one of the 600 (no, I’m not joking) TV channels this hospital offers.

It seems there is always something to be astounded by here, even if just a little thing. Watching the other patient's journeys is moving. Although some haven’t seen as much progress as they’d hoped for, from an outsider’s view, it looks like a whole different picture. When you are not emotionally invested, you can sometimes see the tiny improvements they can't. I did an insane amount of research before I settled confidently on this treatment and I knew what might be reasonable to expect (or not expect). It always interests me to see people in any given treatment who expect a miracle. This embryonic stem cell treatment may be a miracle in many ways (like the discovery and application), but it is definitely not a spontaneous one. Although many people see improvement righ away, it’s still science -- slow growing cells that need time, patience and love to develop. There are some people here who clearly get that. Unfortunately, there are some that do not. They want results, instantly…and ones they can see. If something doesn’t happen each day where they can prove progress, they look upset and discouraged. Sometimes I want to shake them (don’t worry, I don’t) and ask them what they would say to a pregnant woman who insists every day that her doctor do an ultrasound to monitor her growing baby. I’m sure they would tell her that change can’t be measured that way. It is not only unrealistic, but the changes that were there would most likely be visually undetectable from one day to the next. I wish that people could see their own situation objectively. But, I also wish for Sushi and that never happens for me, so I’ll go back to practicing patience and let those people deal with their own problems. I always joke that I finally know how parents feel when their kids choose negative friends. A couple people here have on more than one occassion made me resentfully think, “I don’t want my stem cells around your stem cells.” There are plenty of positive patients and family members to gravitate toward and since misery loves company, everyone seems to have a friend.

Yesterday, a man here that’s been unable to move his legs for over a decade was up using a walker and calipers for the first time. Another who hasn’t had function for nine years moved both his legs while lying on the bed in physio. I wasn’t there at the time, but I heard from bragging (and deservingly so) wives and fellow hospital mates that everyone was overwhelmed with excitement. The paralysis patients often gain back some motor function before sensory function -- meaning they can move their limbs before they can physically feel themselves doing it. So, even they are in disbelief when they watch themselves in a mirror or on video doing what modern medicine deems impossible.

Challenges
Even as I try to type this after dark, there is not a second that goes by where it is quiet. For someone like me who could blissfully sit in silence all day, this has posed quite a challenge. I feel like I am being swarmed by bees buzzing in my ear, but my hands are tied together and there is nothing I can do to stop them. In addition to having impeccable hearing, I’ve been very sound sensitive the last few years (another not so fun symptom of Lyme Disease). My ears register everything at what feels like a billion decibels. As I try to cope, I find new ways of drowning out noise, although the only way to do it is by making alternate noise. I’ve found if I want to create the illusion of less horn-honking festivities outside my window, I have to put a DVD in my computer, set it to a certain volume and then put on my iPod one notch below that. I’m getting quite good at a battery charging schedule for all the electronics I have to keep revved up just to maintain my sanity. And even then, it’s taking a whole lot of work.

Out and about
On a warm late afternoon a few days ago, me, some of my buddies on wheels (in wheelchairs) and one of the wives and caregivers, headed to a nearby village. One of the patients who regularly rolls there wanted to show the newbies around. On the way, we stopped at Deer Park, which is home to spotted deer, squirrels, birds, rabbits and other wildlife. The group outing brought lots of stares from locals, especially children. Hauz Khas village is so rough looking that it appears it’s about to be swallowed by the earth; but the boutiques that line it look like they belong in Beverly Hills. At the end of the village are dome shaped buildings, which are the tombs of minor Muslim royalty from the 14th to the 16th centuries. Hauz Khas is also home to the tomb of Firoz Shah Tughluq, who ruled Delhi in the 14th century. Beyond that is a river that provides scenery making you feel like you’ve been magically escorted from Delhi, to northern California. The walk there and back was long, but I made it the whole way and even helped push a wheelchair for part of it. The ambitious photographer in me couldn’t have been more thrilled with the delights of greenery in a city seemingly made of dust.

Road trip to the village

And we thought we worked hard!

Selling veggies from his horse cart

Some tombs at the end of the village

Who would have thought this was in the city?

Last night, after being stuck in the hospital for two days because of the body aches induced by my new cells, my mom and I decided to go for a walk. In the nearby market, we spotted a beauty salon called Madonna. The blue toenail polish that is my trademark (which I’ve faithfully managed to keep up even in my worst times) was not looking representative of its purpose. I use it as a reminder that even on my bad days when my head hangs down, there is always something strong and beautiful to see. When we walk into the salon (and like everywhere we go), we are greeted by every person in the place being fixated on us. They stare with no consequence. If you stare back, they don’t flinch. No one cares and I am no less amazed with this as time goes on. I have figured out just to smile -- which gives them extra pleasure and more to stare at.

When you spend all the money you have on medical care, it’s easy to feel guilty when you do anything extra. But, after lots of time feeling this out, I’ve realized that doing a little something extra every once in awhile is more therapeutic than any medication or treatment. As I sit down, I remind myself of this and a quiet man starts what looks like work he takes very seriously. He shakes his head in disappointment as he studies my heels. I want to say something like “I promise they are nice when I’m home.” When he starts to use a pumice stone to remove the dead skin, his facial expressions are indicative of sawing through sheet metal. The dramatics here are unbelievable. Sometimes I look around to make sure I’m not on reality TV because I feel like I’m smack dab in the middle of a theatrical performance. By the time we leave, $20 and two manicures and pedicures later, we are rejuvenated by some pampering and time away from the confines of hospital walls. Walking up the main drag after dark gave us a change of pace -- and a few laughs when we realize the most pathetic looking Christmas tree ever was just erected in front of the coffee shop -- after the holiday. Nothing shocks me anymore. I was happy to see that the double arches of McDonald’s finally recovered from the fire that closed its doors and broke my heart. I’m back in the McVeggie sandwich business and “lovin’ it.”

Little girls like to get pretty too

Saddest looking Christmas tree ever seen

While finishing this blog, I realize it’s almost time for dinner and my nightly antibiotic infusion. As of this morning, we’ve officially used every possible vein in my hands for the small tube they insert to give me the medicine (each one lasts about two days). So today, the sisters (nurses) were busy hunting down good veins as they examined my feet. I’m hoping to get lucky with timing and talk to my doctor at home in the next day or two to see if he thinks I should stay on the medication despite this problem. If he says no, I’ll be totally relieved. And if not, I’ll make sure to find the bright side as always. I think my glittery blue perfectly painted toes bring me luck. Maybe matching blue veins wouldn’t be as bad as they sound.

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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