Embryonic Stem Cell Journey: One Month Report Card

I know, I can’t believe it’s been a month. Actually, it’s been more but in true Indian style, I’m late in writing this. The pace of Delhi has sucked up all my timeliness, concern for accuracy and attempts at punctuality.

I’ve now successfully glided past the halfway point of my treatment and am sailing (well, sort of) through the second month. All the while, I sit wondering, “Where did the time go?” In all fairness, that's sometimes in between thinking "How many more days can I take in this polluted city so far from the sunshine of California and the arms of my favorite people?"

I finally spoke with my doctor Tuesday night about the much debated over brain scan. It seems until he sees the actual films, nothing is set in stone. But from what he could gather off the summary report, it’s probably as doctors here willfully tried to convince me: Not that bad. For some reason, when my own doctor says it, all my defenses are down and I gleefully accept the information.

Last April, my scan in California revealed decreased blood flow in one area of my brain. The test taken here, specified “mild” loss of blood flow in three places. So, why is that okay? Well, I know now that the hospital where it was done originally will usually only note on the report if the damage is at least “moderate.” Here, they report even “mild” findings. It’s possible the other two spots were there in April too, but since they were mild, they just weren’t noted. It seems totally lame to me, but hey, who am I to reinvent their wheel? To keep things simple, three mild spots are an improvement from one moderate one and two mild ones -- which we are assuming was the case before (although further investigation will confirm). It’s unclear if it was the hyperbaric oxygen treatment, heavy antibiotic therapy, stem cells in the past month -- or a combination that helped. Truthfully, it doesn't matter at this point.

I’ll get a repeat scan before I leave here and then we’ll have one more picture of my brain to stare at. It will be a before and after comparison from the same lab here in India, interpreted by the same physician. If there is any change, it will be clear (hallelujah). For now, I’m happy to announce this whole mess of a brain scan saga will be peacefully laid to rest until further notice (yes, I’m cheering too).

With my parents now back in the U.S., my sister-in-law (who will be here for another week) and I are left to carry the torch of making sure to ventura beyond the walls of the hospital daily. Their departure brought far less tears than anticipated, thanks to the semi last minute packing rush and some emotional self-control executed by each one of us.

Before they left, we had our “last supper” at a beautiful hotel that for once, satisfied my raging appetite. My family teased me as I devoured my own plate, and then finished everyone else’s dinner. I at times, still can’t keep up with the constant act of gathering food to keep myself full and content. Part of my mind wanders to wishing the wind would carry me home where everything is at my disposal. The other part of it is immensely glad it can't happen and hopeful my hunger pains will calm before I get back -- for fear of the damage I could do in a country where food is a culture; and available 24 hours a day.

My doctor asked me the other night when I spoke to him if I’d recommend this treatment so far. I’m sure inquiring minds at home want to know. At this point, it’s an unequivocal yes -- but I also recognize it’s too early to tell in many ways how this will play out. In just over a month, I’ve seen a decrease in both my haunting body aches and nerve pain, stability in my balance, and a slight sharpening of my fuzzy vision. My inconsistent thyroid tests are returning to normal and my disheartening allergy to all things dairy (and yummy) have settled beyond any expectation, even in my far off ice cream dreams. I irresponsibly devoured pizza and chocolate cake for a patient’s “going home” celebration recently with no consequences. I've started sneaking dairy in here and there without a peep from my usually unruly stomach. I can't wait to re-eat my birthday dessert when I get back -- with real frosting to make up for the substitute I tried so desperately to convince myself tasted "just as good." I'm now free to say, it couldn't hold a spoon up to Betty Crocker's.

I’m amazed that things could change this fast, but with the knowledge of how these stem cells should work, it makes perfect sense. When I got here in December, the staff asked what my main goal was. My greatest intent in going through embryonic stem cell treatments has always been to avoid the possible plague that entraps so many with chronic Lyme Disease -- the progression into something else (MS, ALS, and other neurodegenerative diseases). If I never got better after this, but never got worse, I would have gained more than many are lucky enough to have. If I improved, my wishes would have been surpassed. Chronic Lyme patients will often go into “remission” on antibiotic and other therapies, but keeping them there is a challenge that has not yet been mastered. I wanted to aim higher than that -- at a better life for myself and those who will sieze this opportunity after me. I am more confident than ever in my future of wellness now. But, as much as I am anchored into the feeling of stable health from today on, only time will harden my hopes and beliefs into the makings of reality.

A couple of things have gotten worse since I started my IV antibiotics here, but it doesn't alarm me because it’s not a first time occurrence. Welcome to my world of ups and downs and all arounds. I’m experiencing air hunger (gasping for breath) again and the palpitations that became near absent since before Christmas are back, although not as severe. I asked my Lyme doctor about it and he reminded me that hitting the Lyme Disease harder can often cause the co-infections (other infections the lovely little tick gave me when it bit) to flare. These two particular symptoms always seem to rear their ugly heads when my Babesia infection flares up. When I think back, I realize this was a problem last time I was on this same medication. I hate it with brutal passion. “Three steps forward, two back,” I remind myself. A clear vision of an arcade game I used to love dances in my head -- as soon as you beat down one pop-up monster, another appears out of nowhere. They are determined always to have the upper hand.

Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. The pop-up monsters are a speck in my peripheral vision -- never my focus, but not forgotten either. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to. Winning has nothing to do with strength in numbers and everything to do with strength of soul. The tug-o-war is over now. I’m determined to take home the prize, which is a healthy me. Sorry little monsters, but you’ll have to find a new place to play your games. My body has reached full capacity with my baby stem cells and there is simply no room for you any longer. Consider it a final eviction notice with no warning: Quickly exit or there will be bigger trouble ahead.

Good riddance and goodbye. Oh yeah, and don’t bother coming back. You weren’t invited in the first place.

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Some pictures, just for fun....

Largest Hindu temple in the world

Baby monkey on the side of the street

Monkey play

Mama monkey

Mother and baby outside of market

The great rack of bangles....and me behind it

Piles of clothes at Sorojoni market

Busy Sorojoni market

"Luck" for sale....

Hand-painted paper mache fish

Man parading through market in a camel outfit

My favorite yam vendor (not because of the man,
but because of the yams)

How many Indians does it take to fill a truck?

Waiter at TGIF's restaurant

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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