Stem Cells, SPECT Scans, and ZZ Top??

Four weeks have passed since we arrived in India, and only six days remain. It’s about this time that our minds transition from feeling desperate to go home to wishing we could stay. Last time we were here, we were reasonably sure we would be coming back for another round of treatments. This time we’re not so sure. Financially, another trip could push us over the edge. To survive with Lyme, treat it at home, and come for stem cells twice we have emptied our savings, closed out old 401K accounts and borrowed tens of thousands from our current one, used up all the equity on our home (which, like most homes in America, is now so upside-down it will take years to recover), had to ask for help from you, our family and friends, and racked up enormous balances on several credit cards. Another trip could break us. So as we come to the end of our journey here, I find myself looking at my current surroundings as though I may never look upon them again. And it makes me sad. I know I’ve said it before, but as dirty, noisy, smelly, frustrating and crazy-making India is, it is also shockingly beautiful and, ultimately, humbling. Coming to this country of extremes is an opportunity to discover who you really are, what is really important to you, and how you plan to react to the real challenges life throws your way. I would love to think that we’ll return someday. Maybe for stem cells. Maybe not.
Maybe we won’t need to.

Sept: Before ESC's/ Nov: After 2 Months of ESC's/ Jun: NOW!

On Monday, we received some good news. No. 1’s SPECT scan results came back, and the measure of improvement is SPECT…wait for it…acular! In talking with Dr. Geeta Shroff, the prognosis is excellent and hope is high.  For those who don’t know, the dark patches are bad, showing limited oxygen to the brain.  So the lighter the image is, the better.  We compared last year’s two scans (one in September before stem cells and one in November after two months of ESC injections and procedures) to last week’s, and the difference is shocking. Nearly all the areas of his brain, starving for oxygen for so long, have been opened wide and are once again receiving life-giving blood. Neurons, axons, and all kinds of tissues are being renewed and rebuilt by Dr. Geeta’s stem cells, which will continue to divide and differentiate for the next nine months to a year. On top of that, though he will likely have more ups-and-downs, today No. 1 is feeling better. He woke up this morning feeling more rested after a good night’s sleep filled with less chaotic dreams. The fog has lifted a bit, and his ever-present headache is gone. Like the whole of India, waiting for the monsoons to bring life back to the land and its people, we have waited for hope to return, and, finally, finally, it has. Like the monsoons, the relief of his symptoms may last only a few hours. If we’re lucky, perhaps a few days. But however long it lasts- after looking at the pictures of his brain- he knows that relief will return. And one day soon, it’s gonna stick.

ZZ Top in Concert, New Delhi, India

Monday night we joined our friends on the patio for our usual evening party and shared the great news. Everyone was overjoyed for us, wondering aloud at the massive changes and hoping that their results would be as successful. Showing those who were still in the first stages of treatment, we assured them that this stuff really does work, to be patient, hang in there, stay positive and have faith. Someone brought out a laptop and speakers, and we blasted music into the hot, wet Indian air. Next thing we knew, Ral, one of our favorite Australians was tying a white, cottony bag around his face to give himself a downy beard. A pair of sunglasses, a branch that nobody was using and another, darker bag as a hat finished the look, and the Nu Tech patients, caregivers, employees, and half the neighborhood were treated to a concert by ZZ Top!

Groupies & Roadies

The girls in the group became instant groupies, and, Brett, another favorite Aussie was roadie for a night. I don’t think I’ve laughed so hard in… well, I really don’t know how long. The combination of ecstatic joy for my husband and myself and the love I feel for the people that surround me here lifted my soul into the heavens to dance. I almost couldn’t sleep that night, as my heart was set to burst, so I lay awake and whispered my prayers to the darkness with a smile spread from ear to ear. It is the same prayer I’ve held close to my heart for so long. I prayed that my husband and I might see health, so that we can bring health back to the world. I prayed for our Nu Tech family, and our family and friends at home. I prayed for peace and wisdom and children. I prayed for you, readers, and I prayed for India.

All you need is love.

I prayed that one day we’d be back, not for more treatments, but as healthy individuals, come to show our future children where our lives and theirs truly began.

Holy Stem Cells, Batman!

Indian Window Repair Service

Ah… Gautam Nagar.  For the last two days we’ve been over at Nu Tech’s secondary location while No. 1 received his second procedure this month, in which the doctors inserted a spinal catheter in order to administer large doses of stem cells over the course of 36 hours.  Staying at Gautam (or Gotham, as the patients and caregivers call it because of the older, less appealing neighborhood it resides in) is always an adventure in attempting to sleep and keeping your mind busy.  Without our friends from the other hospital and the Internet connection we so heavily rely upon, we fill our time by reading, writing, playing computer and card games and trying to stay cool.  Not an easy task when your ‘VIP’ room is missing an entire windowpane, the sauna-like breeze competing against the lumbering air-conditioner.

Duct tape fixes EVERYTHING!

Luckily, we remembered Duct Tape this trip, and I managed to construct a pretty decent cover for the window.  We both slept easier knowing we were unlikely to wake up under a cloud of feasting mosquitoes, geckos playing across my bed sheets, or any number of other critters who might see a large hole with a light behind it as an open invitation for a party.  Through the same set of windows, the noisy chatter and shouts of tiny children at play, all in various states of dress and relative poverty, float cheerfully in and keep us company until late into the night.

Staying in our room at Gautam is like living inside a giant pastel Easter egg.  Three walls are painted a cheerful, sunny yellow, the fourth a pale lavender, while bright turquoise curtains with a bold circle pattern clash garishly when viewed in line with the pink- and purple-flowered sheets.  The sterile whites and ugly greens and yellows of hospitals at home have no place here.  Indians love color, something that seems to be sorely lacking in the West.  On our way home from our last trip, we had a short layover in Chicago, and I was immediately aware of the lack of color.  People hustled through the airport in black or gray or brown, and I mourned the lack of enthusiasm most people seemed to feel for getting dressed and showing off their brightest and best.  Elsewhere in the room, on the back wall, a small clock reads 2:36, day and night, never moving forward or back, a battery replacement long forgotten.

  

Laid out for bandage removal.

To the right of the clock, a scene from some European cliff-side town hangs in a frame over the hospital bed, where only people entering the room- and with a chance of escape- can see it, instead of those who must lie still for hours on end.  To the left, there is evidence of another painting, escaped or removed- a dirty outline the only remaining traces of a frame that once was.  A white plastic garden chair, a long wooden bench with black vinyl padding, an upholstered fold-out floor mat for me, a small metal table, a wall of cupboards that hide our little fridge and hold up the small Philips television, and a small white door labeled ‘TOILET’ round out the rest of our space.  Adequate and clean, if not exactly comfortable.  Interesting, if not exactly beautiful.  Like camping in a trailer in the ghetto.  But we’re not here for the five-star accommodations, anyway.  We’re here to get better.  And this hidden, tired, Easter egg of a room just happens to be where that happens.

Wrapping the antibiotic IV port.

Just like at the other hospital, doctors, nurses, the hospital manager, and the ward boys come and go to attend to our needs and No. 1’s treatments.  You can nearly always tell who is on the other side of the door by the knock- tentative or assertive- and whether the visitor waits for the call to enter or simply opens the door and steps in.  Either way, a visit for any reason helps the time speed along a little faster, and we appreciate the distraction from watching the minutes pass by until we are discharged back to our home base at Green Park, where a pair of good friends waited to say goodbye.  To us.  To Nu Tech.  To India.

They will are headed to their real home in the States to heal and so that others can take their place at Nu Tech, in the room across the hall from ours.  Meanwhile, someone else is headed to Gotham to take our place, for a few hours or a few days, to receive a large dose of stem cells, lay still for hours on end, and hope for a Cure.  Or the Easter Bunny.  Or Batman.  Or all of the above.

One last shot with Ray and Nancy.

Return to India

Art installation above Indian Customs

The heat.  The noise.  The food.  The smells.  The sea of dark eyes, peering from a thousand dark and beautiful faces.  All of it came rushing back the moment we stepped off the plane.  We are back in India, six months after returning home from No. 1’s first round of stem cell treatments, and it feels as though we never left.  Come to think of it, it’s possible there’s a part of us that never did.  Or ever will, since there is so much that we have come to love about this unintended home away from home.

When we left here in November, we returned to California filled with hope and millions of tiny, baby cells coursing through my husband’s body.  We saw a few little improvements in his ability to sleep, eat, and get through the day.  But he was, admittedly, a little disappointed to not see the vast improvements he was told he might expect.  We waited and watched as the magical six-week mark we’d heard about came and went without much change.  The holidays came and went, too.  And, while everyone continued to tell him how much better he looked, he just didn’t feel it.  Like waves on the sand, small improvements would edge their way into No. 1’s awareness and then recede as quickly as they arrived, leaving him frustrated and depressed that all we’d been through to get halfway around the world had been for naught.

Taking a break at home with the kit.

While we waited for the healing to come, we rested, we meditated, we walked the beach, and we prayed.  Next thing we knew it was April.  No. 1 had a few good days in a row, and I could see a flicker of hope in his face that hadn’t been there in a very long time.  His depression receded.  He had more energy.  He was suddenly helping me around the house more, and he even told the guys at work that he saw himself heading out soon to join them again on the basketball court at lunch.  On the way to the doctor on a Friday morning, he announced with a smile, “I feel like I might be getting better.  I’ve been feeling pretty decent.  Not normal, but definitely better.  I think I’m finally on the right track.”  I could have leapt out the sunroof and ran the rest of the way to our appointment, I was so happy.  And it was then that we decided to return to India.  The tiny cells in his body had finally taken hold, it seemed, and we didn’t need any tests to confirm he was healing.  He could feel it!

Those two weeks were probably the happiest two weeks we’ve had together in the last five years.  It was a landmark two weeks.  But it didn’t last.  He woke up one morning during the third week feeling just as hung-over and swimmy as before, returning him to the waking nightmare that is Lyme.  My heart ached to help, to make his days easier, if not tolerable, and his nights a little more comfortable.  Mostly, I felt helpless.  I could only make his nightmare less intense, and even then, only by a little.  But if you know anything about healing with Lyme (or been following our story), you know that Lyme is a carousel ride: up and down, and round and round. Just because you feel yourself dipping down, doesn’t mean you’ll stay there, and our resolve to see this through hadn’t gone anywhere.

View from our window.

Landing in India was like stepping into a warm bath, both literally and figuratively.  Our friend, OP, was waiting for us at the airport, as before.  Hugs were exchanged, and we stepped out together in the dark and steamy 100°F, a typical temperature for Indian nights in the summer, while we waited at the curb for our cab.  More hugs were waiting for us when we arrived at Nu Tech Hospital, where the beautiful nurses seemed as excited to see us as were to see them.  Exhausted from twenty-four hours of travel, we collapsed in our room (just across the hall from our old digs on the second-floor) and slept until the ever-present horns of the cars outside could no longer be ignored.

Hanging out at Nu Tech.

We’ve been here now a little over two weeks, and though there have been a few changes since we left, the routine is so much the same that the feeling we never left persists.  Dr. Ashish and Dr. Prince have moved on to other adventures.  And the food continues to be adjusted, sometimes for the better and other times… well, not so much.  (We really need to start taking pictures.  Think strange lasagna, layered with ground mutton and raw peppers and then smothered in ketchup instead of tomato sauce or cannelloni stuffed with wilted iceberg lettuce instead of spinach… uhhh, what???)  We are still wakened by the sounds in the streets that indicate that the whole of India is beginning its day.  Mornings are filled with the smiles of the men who bring our breakfast and the nurses who take such fantastic care of my husband and myself.  Rita, (without whom the hospital never seems to run quite right) is a nearly constant figure throughout our day, taking our food orders, keeping our little fridge stocked, and ensuring our room, sheets, and towels are always clean and comfortable.  No. 1 continues to head to the basement for physical therapy in the morning and afternoon with time for a short rest between.  And whenever we are ready to head out and brave the intense heat, humidity, and traffic, Jyoti is there at the front desk, coordinating everyone and everything, answering our million and one questions, and fulfilling every request that is within her power to grant.  As always, Dr. Geeta Shroff rules over it all with a tender smile and a firm grasp on the symptoms and treatments of all those under her care.

Party on the patio.

Everyday we feel fortunate to be here, to be among so many amazing people- those who work here and those who have worked so hard to gethere.  Every night, when we gather with our friends (both new and old) downstairs, our heads fill with stories of how they got here, how they’ve been, and what they’re hoping to get out of this round of treatments.  We commiserate over the expense of getting sick, frustration with our governments that seem not to want to help, and how likely (or unlikely) it is that we’ll be able to return for another round.  Occasionally we share complaints about the heat, a lack of sleep, or the loss of privacy and quiet.  But mostly we share our wonder at a place that is so different from home, and in doing so, we create a home that’s all our own.  Our doors, our ears, our arms, and our hearts will remain open to one another long after we’ve returned to our countries of origin.  Our lives, ever connected by a common experience, will remain ever changed by the love we each share for one another.

Home again… I think.

“Did we really go to India?  For two months?”  It’s five days since we’ve been home, and I still catch myself asking No. 1 the same questions several times a day.  Our trip already feels like a long, beautiful dream, and I often catch myself trying to pull the details of the time we spent there from my fuzzy, sleepy brain.  Still feeling like my head’s wrapped up in a soft wooly blanket from the jet lag, I spend most of my time in a daze not knowing what to do with myself.  Even as I write these words my brain is whining at me.  Tired doesn’t even begin, which is weird because I don’t remember being this tired when we got to India, but then that may be because we were too busy being sent out for tests and trying to find our way around for either of us to notice.  The start of our trip, while we were still learning to navigate our way around Delhi, seems like the first days of high school did when we were able to look back as seniors- a million years ago.

 

Tiny and beautiful.

I miss it already: the sounds of our neighbors greeting the nurses first thing in the morning, the smell of incense burning and peanuts roasting on the street vendors’ carts, the constant harsh-sounding chatter of a language we couldn’t understand surrounding us, the vibrant colors and sparkle of the fabrics that wrapped loosely around nearly every woman from eight months to eighty years old that walked past us, dinners spent in the hospital lobby with our friends, late-night walks to the Mother Dairy cart for an ice cream cone, flowers and fruit stands on every corner, random temples and shrines in the most unlikely places, hopping in a dilapidated tuk-tuk for a dollar or two whenever we wanted to get across town, the daily festivals, and a thousand other details that made up our experiences in a country I will not soon forget.  Both No. 1 and I feel that India changed us in ways we never expected, and we’ve returned home with a new sense of appreciation for, well, everything.  Long, hot showers, quiet mornings, hot dinners, clean air, clean and softened clothes, sleeping together in our own comfy bed, family, friends, and our two little fuzzbutts top the list.  But, then, when you’ve watched whole families bedding down on a street corner in the middle of a busy intersection for lack of anywhere else to go, it gets a little easier to appreciate even the smallest of comforts so many of us take for granted.

One thing we haven’t taken for granted, however, over the last five years is health.  Before Lyme invaded my husband’s body, I don’t think either one of us much considered what it would be like not to have health.  But once he lost it, getting that health back quickly became our main- if not our only- objective.  It’s been a long slow haul trying to find a way for my husband and I to get back to our vibrant selves, and our trip to India was a big step toward our ultimate goal, not to mention a giant leap of faith.  And while we’re not 100% of the way there yet, we can feel it getting closer every day.

Not unexpectedly, since our return, everyone wants an update.  “Are you any better?” we hear over and over.  And though it’s still very early in the game, I’d like to think that the small changes we’re seeing are enough for us to shout out a resounding, “YES!”  Though he still has a long way to go before he can be declared well, better sleep (though jet lag has thrown this improvement for a bit of a loop), greater appetite, and small blocks of time each day (or every other) in which the fog lifts a bit are all signs that the twice daily injections, IV’s, and physical therapy he received for two months are beginning to work their magic.

Before and After SPECT scans

More dramatic and visual proof, however, that No. 1 is on the mend came just a few days before we left Nu Tech in the form of a follow-up SPECT scan.  A brain scan that would normally cost us $5000 in the US was a mere $270 in India.  So we got two.  The first was performed the day after we arrived in New Delhi and showed us what we pretty much already knew.  No. 1’s brain was riddled with dark orange, purple, and blue splotches, indicating all the areas where the Lyme bacteria were cutting off blood flow, and therefore oxygen.  It became glaringly clear after seeing the first set of images why the poor guy has felt hungover and depressed the last five years.  His brain has been literally starving for air.  Lyme bacteria hate oxygen and have done everything they could to protect themselves, nestling ever deeper and cozier into his soft brain tissue.  But, eight-and-a-half weeks and millions of stem cells later the second scan showed a much different picture.  Throughout his body, the stem cells have done their work and will continue to do so for another six to nine months as they continue to seek out the damaged areas and grow and divide, making their repairs.  His second scan shows that his brain now looks much more vibrant, with many of the dark spots having disappeared completely, and displays an overall improved brightness.  All this added brightness indicates that blood flow is returning to normal and bringing with it the oxygen that his brain so desperately needs.  After the follow-up scan the doctors at Nu Tech sat down with No. 1 and congratulated him.  The new pictures showed a ‘normal’ brain (though I don’t know that I would go THAT far ), and it wouldn’t be long, they assured him, before he begins to feel the changes that we now had proof were happening inside his head.

We are both extremely excited, to say the least, but the need to be patient remains.  The damage to my husband’s body was not done overnight, and it would be unfair to expect the repairs to be done any faster.  Bones do not knit in a day and neither do brains.  In six to nine months time we will know more fully how much the new cells have affected his healing and will then be able to decide if we need to return to Nu Tech for a four-week follow-up dose of additional stem cells.  But, until then, we wait, we remain grateful for all we have and all we experienced during our adventure, and we keep close the friendships, the hope, and the perspective that we gained in traveling halfway around the world.

There are so many details, so many additional stories of places we went and things we saw while in Delhi, that I hope to be able to share with you.  But I think right now it’s time for me to see if I can get a little more oxygen to my brain and try to adjust to this crazy 13½-hour time change with a very much-needed nap.

 

lYEZVIV$VxlV

Ten More Days in Delhi

Sand painting created in the lobby at Nu Tech for Diwali.

Just ten more days.  That’s all that’s left.  When we started out on our grand journey to India, sixty-three days seemed like forever.  The very first night here felt like walking into the Twilight Zone, and we can both remember wondering what it was exactly we had gotten ourselves into.  Now, having become accustomed to so many things that at first seemed foreign and strange, there is a certain sadness we both are experiencing at the thought of leaving.  Nu Tech has become a second home, and though there are some things we won’t miss at all (particularly water that can’t decide if it will be hot or cold, unfortunate fish dinners, the constant noise, and smoky, dusty air), there are many more that we will miss terribly.

A nearby temple dressed up for Diwali.

All this week there has been a spirit of celebration around the entire city.  Strings of lights seem to double in number every day while everyone prepares for Diwali- think of it as a kind of Christmas for the Hindus- buying gifts and running here and there to prepare for feasting families that will come together for the grand holiday.  Fireworks have been going off outside our window for days now, and we are told not to expect to sleep Friday night, as it is unlikely the fireworks will stop until very late in the morning on the eve of the actual holiday.  Even now, the ward boys in the hospital are up on the roof tossing hundreds of tiny twinklers across our window so that even the patients and employees of Nu Tech will be able to join in and enjoy the festivities.  Later, we will go downstairs for a creative project that Jyoti, our wonderful hospital coordinator, has arranged for us.  She and the doctors (and even strangers) are always happy to include us in the latest festival or wedding celebration and teach us about the beauty of the Indian culture that surrounds us everywhere.

Just a few weeks ago in fact we heard music late at night.  Running downstairs in our pj’s, we hoped to stand on the sidelines and get permission to photograph the groom’s family and friends while they danced and prayed at a tiny temple that sits (literally) in the garbage dump across the street.  When a few of the men beckoned No. 1 closer, he thought they were encouraging the tourist to get a better angle.  But next thing we knew both of us had been dragged into the center of the frenzied dance circle.

Pulled into an Indian wedding in our pj's.

The men and women circling us showed us how to dance with our fingers pointed up at the night sky, perhaps to lead their prayers and joy in the right direction- toward heaven- and we laughed and laughed as we did so.  After a few minutes, the party was ready to move on and began to parade back out of the dump, but not before many members, including the groom, came to shake our hands and thank us for joining them.  It was the first time in a long time I had seen No. 1 smile and laugh so readily, and by the time we walked back to the hospital I knew I had seen the beginning of more joy to come.  I went to bed that night anticipating that joy like a three-year-old waiting for Santa on Christmas Eve.

Since then, and especially since the 3-day procedure at Gautam that he wrote about so beautifully, No. 1 has continued to improve, and his smile is returning.  For the last five years I have asked him every single day how he is feeling, and almost every single day his answer has been the same.  Not well.  Dizzy, foggy, headachy, tired and sad. He couldn’t see a way out and would sometimes despair that maybe this would never end.  And every single day I have taken his head in my hands, kissed it, run my fingers through his hair and reminded him of how completely wrong he was, hoping I was right.  Never have I and never will I be able to accept or imagine that there is not a healthy future for the both of us, though sometimes I have wondered if I was kidding even myself.  Would I eventually have to submit our lives to a host of tiny bacteria?  Would I ever have to stop hoping- in order to save sanity- that somewhere there was someone or something that could fix this?  I resisted presenting these questions to the universe because they are questions no one wants the wrong answers to.  And if you are out there and have asked these questions about your own health or the health of someone you know I can tell you now that, if you have the will to keep looking, keep trying, the answer is absolutely not.  You don’t have to give up.  In fact, you can’t.  None of us can, whether we’re fighting disease, poverty, inequality, the government, or even ourselves.  Giving up hope is the only sure way to lose.

Living at Nu Tech, and really just visiting India, has instilled this mindset in me more than ever.  It took a lot of fighting in order for us to get to this place.  Much of the last five years seems like a series of bad dreams.  But it will end.  Hopefully sooner than later.  But there are others here who are only just beginning and have a long, long way to go.  There are patients here battling ALS, brain injuries, stroke, Autism, Cerebral Palsy, or trying to rebuild completely severed spinal cords.

One of many patients at Nu Tech with ALS.

They will get better here, most of them, and they will see enough improvement that it is likely they will be back- if this isn’t already their third, fourth, fifth, or sixth trip here- and at least there is somewhere in the world where they have been given the opportunity to try.  On the days I go down to the basement with No.1, I always find myself looking around and wondering where these people would be if they had just allowed themselves to live with disease and pain. The looks of concentration and determination answer clearly that they wouldn’t be anywhere else.  Life without hope that there is a brighter future ahead for them is out of the question.  It is unlikely that most of the people who surround us here will ever give up on their passions.  Right now, most of that passion seems to be aimed at getting healthy.  But once they’ve achieved that?  Well, God help the person who tries to get in the way of whatever they decide to do next.  These people could take over the world, and believe me when I say the world would be a better place for it.  I will miss our new friends most of all.  Those who have left before us we miss already.  But I know that some of our new friendships will last for years to come and that the passion they will continue to fight with will remain an inspiration to me forever.

Diwali lights at the elite Select Citywalk Mall

Someday in the near future, my husband will remember health and stay there.  His hope is returning, and with it a belief that he has the power to make a larger impact on the world also grows.  We both feel that our work on this planet is just begun.  Seeing the enormous divide between the street-dwelling gypsy children and mothers and the extremely wealthy elite in Delhi can make the US seem like Avalon.  But, as we all know, home is less than heaven.  People are suffering in our own hometown; hope dwindles among the poor, the sick, and the homeless, and there is little need for it.

Two little cuties on the 'poor' side of town.

With all the care, joy, love, and education we have gained from strangers in a foreign land, it seems even more selfish to come home and keep all of those same things that are so easy to share for ourselves.  So, while we are still counting the things we will miss having or seeing or experiencing when we leave India, we are also looking forward to the things we have to give and share and teach and show when we return.  In just ten more days.

Six Weeks

(Guest blog by Greg Compton, aka No.1)

All taped up with the catheter in my spine.

Yesterday I returned from my first ‘three-day procedure.’  They pretty much call anything other than the usual twice-daily subcutaneous or IV injections ‘procedures’ here.  So far I have had three: The caudal procedure in which stem cells were injected into my tailbone, a deep-spinal-muscle procedure in which they were injected in my neck on either side of my spine, and now the three-day procedure.

It is called the three-day because it is administered at a different facility than the one we normally stay at, and, although we are only gone a little over 48 hours, those hours span Wednesday, Thursday, and Friday.  In this procedure, a catheter was inserted into my spine so that stem cells could have direct access to the spinal column and therefore better access to my brain, from whence all my problems ‘stem’ (ha!).

The last couple of weeks have been pretty rough.  I have avoided posting or even reading Facebook because, well, I have this thing about not posting the negative stuff.  I have been told to stay positive, think positive, be positive, do positive, and in so doing I will stimulate the stem cells in a positive way – you know, the whole mind-body connection thing.  So I do my damndest to keep a positive attitude, even when I feel like all hope is lost, and yes, those times do come.  So posting that I have fallen again into a deep hole just does NOT work.  True, I think I have seen improvements, but it has been awhile since I had those first “good few hours,” which, from a healthy person’s standpoint, would still be considered pretty yucky.  Still, it was something that I could pin hopes to, but also a place to fall from.

Melissa walking along the front of the Gautam Nagar facility.

Melissa, my true reason for living, for fighting, for staying the course, is so good at reaching into those black holes and somehow pulling me out, and it kills me to see how much she hurts when I am there.  Dr. Ashish, who administers all the procedures here, warned me that this would happen.  “One step forward, two steps back,” he told me.  “You will re-experience some of your symptoms, and that can be difficult.  It will be confusing, and it is normal to feel doubtful at times.”   So far his words have been prophetic, but also infinitely helpful as I find that I am better able to drag myself out of that hole or even avoid it altogether when I feel the sneaky depression spiral coming on.  Still working on the pure faith thing.

Gautam Nagar lobby (Gotham)

And so, on Wednesday morning, we set off to Gautam Nagar, the neighborhood in which the other Nu Tech hospital stands.  Some of the patients here have nicknamed this place “Gotham” because, well, it kinda feels like that there.  I have been feeling especially bad the last week or so, with a crescendo last Friday, when I felt like I had the flu minus the chills and fever.  I saw this as a good thing…a Herxheimer or what is known as a healing crisis, right along with the usual inflamed and sore lymph node that has been one of my on-again/off-again Lyme symptoms.  Still, it is disheartening to feel so bad when I have worked so hard to get here to feel better.  The days that followed, leading up to this Wednesday, I felt so bad I really doubted I would be able to have a tube put in my spine, but I had no fever, normal blood and urine tests, and normal BP.  So I was fine according to the tests, I just didn’t feel it (welcome to the world of Lyme), and into the cab I went, headachy-swimmy brain and all.  When we got there the first thing they did was put an IV port in my hand and prick my arm with a test dose of the IV antibiotic they were going to give me throughout our stay.  This involved a stingy injection under the skin to see if any allergic reaction would occur.  The skin tested normal but within a few minutes itchy hives broke out on my abdomen, my throat and ears started to itch, and I broke out into a cold sweat.  The good times were apparently rolling now!   No big deal after all (good thing I got a test dose) and they changed to a different antibiotic which worked fine.  A few minutes later I was in the OR, and Dr. Ashish was explaining what would happen next.  After that I was rolled over on my side, and in went the local anesthetic (just a small pinch) about the mid-lower back over my spine.  I could feel him working as he installed the catheter, and shortly he was asking me if I felt anything.  “Any pressure or sensations?” he would ask.  “No, nothing,” I would respond.  This went on for a few minutes more until finally I could answer “yes.”  Indeed, I could feel a pulling pressure in my lower gut and some uncomfortable pressure in my lower back.  “Excellent!” he proclaimed.  He had apparently found the spot.  I must say I was somewhat proud of myself at this moment, for I had not one ounce of trepidation before or during this procedure (OK – I was a little concerned over the allergic reaction thing, but hey!), and the heart monitor which steadily beeped away and never increased as my spine was probed proved it.  If there is one thing I have gained from this experience it is confidence, and I am thankful for that.  Before I knew it the procedure was over and I was rolled onto my back for my first catheter infusion into my spine.  Again, “Any sensations, maybe down your legs or chest?”  “Yep – I can feel it in my lower back and gut….and oh yeah, a little down my leg now!” I was quickly able to say.  Four syringes full of stem cells went in, and by the time he was done, it felt like someone was stepping on my back and gut…not the worst pain ever, but uncomfortable.

Lifting me up onto the bricks.

After that I was wheeled back to our room where I was to lay flat on my back with the foot of the bed jacked up with bricks under two of its wheels for four hours so the stem cells would drain toward my head.  Once again, as with the caudal procedure, where the same upside down laying was necessary, my lower gut began to ache incessantly as gas built up but could not escape.  During the caudal I made it 3 hrs 45 min before the pain became too great, and I rolled over on my side, doubled over.

Two hours on my belly- fourth round of ESC's at Gautam Nagar.

This time I only made it 2-½ hours and spent the rest of the tilted-up 4 hours on my side in a fetal position which relieved the pain to a tolerable level. And so it went, four infusions later that evening, again morning and evening the next day, and one more time the third morning (a double dose this time).  The saving grace was that each time after the first tilted-yoga-laying (except for the last) I was on either of my sides or flat on my belly – MUCH easier.

 

Dr. Ashish asks how I am doing each and every time he comes to push in the clear liquid magic.  The morning after the catheter went in his eyes lit up and widened as though he just witnessed a miracle with an equally amazed sounding “excellent” when I told him I was feeling much better than I had been the last week or two.  This was especially remarkable considering I may as well have been sleeping on a bed of nails for how much sleep I got that night…and that’s saying something for me!  Ordinarily such a crappy night’s sleep would have left me feeling beyond terrible and tossed me right back down that deep dark hole.  During that evening’s infusion Dr. Ashish again asked how I was doing with an emphasis on the emotional.  When I told him, “still up and down – still doubtful at times,” he reminded me again that this is normal, that “everyone [in your situation] goes through depression and doubt.  Yes – health will come soon, but there will be ups and downs.  You have to keep moving on, and don’t be afraid to keep living.”  Well, it went something like that, and again he was pleased to hear that I was doing better at taking such messages to heart.  After my last infusion on Friday the sisters (nurses) removed the catheter and we finally left for the main hospital after lunch.  The good news (I can see your smile now Dr. Ashish) was that upon leaving I can at least say I was feeling better than when I arrived on Wednesday!

They have told me here over and over again (as have numerous patients) that “after six weeks it is like a light switch, and then it will be up, up, up, and up!”  So now, on the eve of my six week mark, I am sitting here contemplating hope, healing, and faith, and I am again thinking of the sign I received just before we left for India.  Did you know God sends e-mail?  OK – it was actually my dad who sent it, but its meaning was not lost.  Just a couple of days before leaving for India I was laying on the couch, questioning again if I had made the right decision – doubtful, fearful, scared shitless with tears streaming down, wondering if even stem cells could save me from this foggy-spacey hell.  And so it was that I asked God, the universe, the One, all consciousness, or whatever you want  to call it for some sign that this was not just the right thing to do, but the thing that would ultimately be the road that would lead me back to health.  An hour later I was at my computer checking my e-mail and there was a message from my dad with a link to an article about stem cells, which he was forwarding from a family friend who thought I might be interested in reading it.  I clicked the innocuous looking link and as soon as the article appeared I stared at the screen in amazement and the tears once again began to well up.  The title of that article?  Stem Cells: Keep the Faith.

Rhythmic India

Today is Friday, and I am sitting in our room in India, waiting for No. 1 to return from one of the ‘procedures’ that he will receive while he is being treated at Nu Tech.  Today’s is called a Deep Spinal Muscle procedure, or DSM, and is a relatively simple injection into the muscles in the back of his neck.

 

Lying back for awhile.

 

Forty million stem cells will then (hopefully) travel into his brain, where they have the most work to do, and continue their job of breaking down and repairing the areas that have been damaged by the Lyme bacteria that have been living there the last five years.  Other patients have been through it and have assured us that it’s really no big deal pain-wise, and that the anticipation of the event is worse than the event itself.  Afterward, he will be brought back to the room and required to lie still for an hour.  He’ll have one more round of ‘physio’ this afternoon, and then he’ll be free to rest or take a walk or join me for yoga or whatever it is he wants.

Aside from the DSM, today is just another typical day here.  In fact, the schedule is so regular that some of the patients and their caregivers began joking that they feel they are living a live version of the movie Groundhog Day, as each weekday (especially by Wednesday or Thursday) begins to blend into the one that preceded it, and we all start to lose track.  And it’s true.  Without arranging to get out of the hospital to sight-see (which the staff is more than happy to help you do), the only events that might help one to keep score is whether or not yoga will be held in the basement that afternoon.

 

Hurray for the ice cream man!!

 

And even then, you may just end up opening your laptop to check because (at least for me) time in India has such a unique way of both stretching out and speeding up at the same time, making hours feel like only moments in time and whole days feel like several.  Remember when you were a kid standing in the middle of your summer vacation, and you felt like you’d been off for a while, but there were still several weeks of swimming and sleepovers and cookouts to go?  It’s kinda like that.  Only not.  I don’t know.  You may have to come and experience it for yourself to know what I mean.

So, what does a typical day here look like?  Well, in the morning, it’s always busy.  We adjusted really well to the time change and wake up almost without fail at around 7:45.  Between eight and eight-thirty breakfast arrives (always two poached, boiled, or scrambled eggs for each of us or a simple omelet).  We eat, and before nine one of the ‘sisters’ (read: nurses) comes to give No. 1 his first injection (or occasionally an IV drip).  Maybe we have time to Skype with a parent or two, and then No. 1 heads down to the basement for physical therapy by ten.

 

No. 1 at 'Physio'

 

While No.1 is in physio, I am either down with him, taking pictures, or cleaning up our tiny 10’X12’ space (folding up my bed, washing dishes or a small load of laundry, ordering our meals from Rita- one of the many warm and smiling faces at the hospital), receiving packages, returning emails, and updating facebook.  I have to work quickly because, by the time No. 1 gets back, Rita and the ward boys are also waiting to wash our floors, empty the trash, change the sheets, and clean the bathroom.  (They are always so efficient and quick, I’m beginning to wish I could take one of them home with me!)  Anyway, after morning ‘physio’, No. 1 comes back upstairs for a short rest, another quick Skype session, or a visit from one of the doctors, and before we know it, lunch is here.  All of our meals are brought to our room.  Lunch is always Indian food, which we have come to look forward to it despite having only tried it once before coming to this country.  Even for hospital food, it is really, really good.  And after a few weeks now, we even have favorite dishes that we are always excited to see on that day’s menu.  Our faves so far?  Butter chicken, chicken in yogurt, dry curry chicken are a few (Seeing a theme here? There is a lot of chicken served here.  No beef, but we have found that we like the lamb and mutton here, too. It’s not gamy at all like it can be at home.).  Immediately after lunch, it’s time for ‘physio’ again, and so it’s back to the basement for a half-hour.  But after that, and until No. 1’s evening stem cell shot, we are free to make the day our own.

 

Tomb of Iltutmish

 

On most days, as with most of the patients who are here, we play the afternoons by ear.  Stem cells will take their energy from No. 1 first, and sometimes that means that he’s wiped out and needs to rest.  This is normal and expected, and so, when he feels like resting, that’s what we do.  Some days, however, like yesterday, we try to get out, whether that means taking a walk to Green Park Market that’s just a block away or renting a cab to the mall or one of the nearby tourist sites.

 

History in Motion: Dancers at Qutab Minar

 

Though a tuk-tuk is far cheaper, ‘cheap’ here is a relative term.  For ten American dollars, we can rent an air-conditioned cab to wait for us wherever we go for up to four hours.  We have found a wonderful driver at the Taxi Hut (literally a dilapidated kiosk where the boss waits for customers and the drivers wait outside on cots under a makeshift overhang for the boss to put them to work) named Gyan who told us he is from Nepal and is bound and determined to take us to Agra to see the Taj.  We told him that won’t be for a few weeks, but with a bright smile on his face and a very excited demeanor, he tried to convey to us that it didn’t matter as long as we didn’t use anyone else.

 

Qutab Minar among the ruins.

 

Yesterday afternoon we had him take us to the Qutab Minar complex where we marveled at the ruins for hours.  We took a gazillion pictures of the tombs, mosques, towers, and local dance performers, and though the air quality was bad, our moods were very, very good.

Afterward, Gyan mumbled some kind of question about whether we wanted to see something else, and without asking for clarification we agreed and soon found ourselves being ushered into a basement shop in a narrow alley that carried the most beautiful silk and cashmere rugs (from Kashmir, no less) and other handcrafted items.  They showed us how the rugs were made on an old wood loom, sat us on a white leather (or was it pleather?) sofa, and served us a delicate and aromatic tea they sold on site in a beautiful China tea set.  All the while, they rolled out carpet after carpet, working (very well, I might add) on the hard sell.  Had we known what a deal they were offering, we might just have bought one.  But as we hadn’t done much price comparing and had no idea what a rug should cost us in India we bought a few other items (an elephant sculpture made of camel bone, a purple- and red-striped pashmina shawl, and a walnut box made in an unusual hut-like shape) and skedaddled outta there.  We probably will go back, though.  They had so many beautiful things, and we think we got a good deal on what we did buy.  There are a hundred other markets to see before we leave, though, so we’ll have to wait and see.

 

Nu Tech @ Night

 

The end of the day is always the same.  Dinner is brought to our room.  No. 1’s second injection is administered around the same time. We spend a couple hours reading, writing, Skyping, or hanging out downstairs with our new friends on the patio, and before too long, it is time for bed.  By ten or eleven o’clock we are snuggling down under the blankets- No.1 in his hospital bed and me on my foldable chair/bed on the floor- and quickly falling asleep.  Outside, the noises on the street finally start to settle, and the dogs take up where the cars left off, creating a wholly different form of traffic that is all their own.

Tomorrow will be much the same as the day before it.  But the rhythm here is becoming a part of us, we like it, and we’re finding health, hope, and happiness inside India’s steady beat.