A Promise Kept

February 1st, 2008 at 08:34am Amanda Boxtel 18

January 27 – January 31, 2008

Four months at home of hard work and intense physical therapy with Tami, Gabrielle, Dale, and Zander; a weekly yoga session with Emily Hightower; and a weekly massage with CP; walking regularly in my leg braces and parallel bars; and cycling on my electrical stimulation bicycle three times a week has ALL PAID OFF!!!!!  I am pleased to report that Chavi (my adorable physical therapist in India), Dr. Shroff, Dr. Ashish Verma, and Mum are absolutely thrilled with my progress.  Having been gone for four months, they clearly see my strength and improvements.  It has been tough to monitor my own progress at home.   My trunk mobility and lower abdominal strength is remarkable. 

·         I can rotate my pelvis while on all fours;

·         I am able to lift up a hand balancing on two knees and one hand with ease and without falling over (originally I had difficulty simply balancing on all fours, let alone crawling forwards and backwards);

·         I am stronger when I lift up to a kneeling position on my knees, balancing with my therapist/partner and maintaining a straight posture with my hips forward;

·         I am able to slightly kick my leg (knee down to foot) away from the mattress when sitting on the edge (something I could never do before—quads and hamstrings);

·         from a sitting position in the wheelchair I can lift my legs one at a time and place one foot forward in front of the other, which is evidence of increased power in my leg muscles;

·         and Mum is amazed at my ability to place my legs on the bed one by one on my own without lifting them with my hands. 

Upon leaving India last August, I made a promise to Chavi that I would return stronger than when I left.  I kept that promise and Chavi is impressed.  While the stem cells continue to grow, I have rewarded their growth feeding them with the necessary conscious mental positivity and physical stimulation in exercise. 

I firmly believe that mental consciousness influences stem cell expression.  Dr. Laurance Johnston forwarded me a note after he recently finished reading the six volume metaphysical/spiritual classic “Life and Teachings of the Masters of the Far East” by Baird Spalding.  In lectures given in the 1935-37 period, Spalding stated the following, which seems very relevant to HESC transplantation.

Page 78 Volume 6:  

“As the cell divides and creates a new cell, our thought is implanted upon it.”

“In the first cell, all is perfect. That cell was first known as the Christ cell.  It is always just as young as ever it was. It never takes on old age. It is the primal spark of life. When we implant in it our thoughts of limitation or old age, or any condition outside of perfection, the body responds. Cells born from the first cell take on its image. Originally it is the image and likeness of God. It is perfect in every way. But it becomes the form we carry in our minds.”

“…if we carry the image of perfection always, what will it do for these cells? It will build perfection.”

Page 92:  

“The moment a cell divides itself from the parent cell, and the instant before it divides itself, it takes on the exact image of the parent. As it goes out, it comes under the influence of this imperfection that we think for ourselves. What happens? We see the vibrations of the cell lowered, and in some instances when it attaches itself to the organ where it belongs, it is a dead thing…The very thought influence of imperfection influences that cell until it dies. The vibrations go so low that the dynamic influence flows out.”

I have managed to maintain this positivity regardless of my immense challenges these past few days.  Last Sunday I had my backpack stolen with all of my most important documents including US passport, wallet (credit cards), cash, driver’s license etc.  The backpack also carried my Vocare electrical stimulation device I use to urinate.  Although my bladder is becoming stronger I still use the device to empty fully and to check the residuals left in my bladder.  This negates the use of catheters, and thus exposing me to possible infection.  So, the device is gone!  What is my lesson in all of th is?  I MUST learn to fully pee on my own—which I am, on most occasions.  My bladder is getting stronger.  All of my belongings/documents can be replaced.  My lesson is to surrender, let go of all of my attachments, and know that I already have what I need—the love from my mother, my friends, this beautiful community here in India, food for my belly, a roof over my head, and a warm comfortable bed to sleep in at night.  I have so much more than the lonely soul on the roadside across the street who has nothing but the shirt on his back.  A new credit card arrived via FedEx today, and a new electrical stimulation device will arrive by Monday.  A new passport is being processed at th e US Embassy…so all is well.

Human Embryonic Stem Cell Procedures

In the two months of my first treatment last summer I had a total of five procedures along with six days of intense physical therapy and walking with leg braces.  This time around for my second treatment, Dr. Shroff and Dr. Ashish Verma are condensing all five stem cell procedures into one month.  The procedures include:

1)    Caudal Procedure (toward the tailbone area) – injection of two syringe-fulls of HESCs into the cauda equina area near the coccyx

2)    Deep Spinal Muscle Procedure – two injections of HESCs into the muscles on either side of my spinal cord at the site of injury

3)    Thoracic/Lumbar Puncture – injection of two syringes of HESCs below or above the injury site directly into the spinal cord

4)    Three-day Procedure – catheter inserted into the outer sheath of the spinal cord with tubing that is taped to the back and a portal that hangs over the shoulder.  HESCs are injected into the portal to saturate the outer spinal area over the course of three days.

5)    Two-day Procedure – same as three-day but only for two days.

No physical therapy is allowed during procedures.  Each procedure affects the body in different ways.

Both the Caudal Procedure and the deep spinal muscle procedure went without a hitch.  I noticed that my strength improved and Chavi increased my therapy repetitions to fifteen counts instead of ten.  After therapy, I practice walking in parallel bars.  My leg braces have been a challenge because my right foot has a tendency to supinate inwards.  Gabrielle, bless her heart, FedExed my leg braces back to India so they could make some critical adjustments.  I was hoping to try some different braces, but I will instead locate a good prosthetist in the United States to mold new braces that will fit correctly and put me in correct alignment.  All-in-all, I am showing improvement and the HESCs are working!

Thank God for Chanel No. 5

On Monday, January 28^th I had a very traumatic spinal procedure.  The procedure was a Thoracic puncture directly into the spinal cord.  Last year in my first treatment I had this procedure done below my level of injury in the lumbar region.  This time, the procedure was conducted above my injury at approximately the T-4/5 area.  My goodness, I don’t want to EVER have this procedure again—I feel like I’ve literally been to hell and back.

In the operating theater I was asked to sit up on the operating table with my chin tucked into my chest.  I curved my back in the fetal position sitting up.  I was asked to keep very still.  Dr. Ashish swabbed my back clean instructing me not to have a shower for a couple of days.  He then anaesthetized the area and inserted a very fine needle into the spinal cord.  He proceeded to inject the human embryonic stem cells.  I felt immediate burning and warmth all over my back and down to my lumbar region.  Electrical tingles filtered to my toes.  After a brief while, Dr. Ashish asked me to lie down on my back, he tilted the operating table up and down, right and left.  I felt a huge gush of tingles on my inner left thigh.  Deep pressure filled my ears and sinus passages and I felt like I was submerged beneath fifty feet of water.  My legs felt heavy and stiff.  The blue theater angels then carted me away to what I deem to be “my” room…201.  Not long after a humungous headache throbbed in my temples.  The headache became a migraine and soon after my vomiting began.  I vomited for a straight 25 hours.  If I couldn’t bring anything up, I still dry heaved.  Clutching a silver kidney dish, I retched until my insides ached.  Finally I ate half a pear upon strict instructions from Dr. Sherma, a beautiful young doctor who said he wasn’t leaving until I got better.  I kept the pear and a half a cup of tea down…and the vomiting ceased…yet the headache persisted.  The nurse was kind enough to give me an injection into my right thigh (the one where I can’t feel) to help with the headache.  Each time I threw up, my body sweated profusely and then I shivered for ten minutes.  I was a putrid, sweaty, sticky mess and my arm pits stunk like an Indian in a luggage store in 117 degree heat at the height of summer in Delhi.  Mum whippe d out the Chanel No. 5 and splashed my wrists and neck. 

“Thank God for Chanel No. 5”, she smirked. “It goes really well with the Detol Antiseptic Soap I used to wash my bum in the shower this morning!”

And then, in her candid moment she exclaimed, “Manda, after this procedure I expect nothing less than the Can Can…and I’ll watch you do it on the webcam on Skype from home.”

Now that’s a lot to live up to…but if Mum wants the Can Can, I’ll do it. 

I say, “Thank God for MUM!”  Mum has been a pure Godsend.  When I’m sick, I want nobody else but my Mum.  She soothes my brow with her cool hand, comforts me, and is calming.  I love my Mum and I’m really thankful that she is here.  (Mum’s are also great when purses are snatched and you’re left stranded without a cent to call your own.)  Thank you Mum for your patience, perseverance, and unconditional love. 

Two days later, I still have a headache, but I’m strong enough to write as I sit propped up on three pillows in bed.  I had a light physical therapy session with Chavi–legs only!  Any exercise in the sitting position caused tremendous dizziness and made my headache worse.  While this procedure is the roughest on the body, it usually produces the most improvement in patients.  In my light therapy session today, Chavi noticed that I was stronger as I performed one exercise lying on my right hip, with my left leg bent.  I was able to assist her lifting my inner thigh and left knee upwards for the fir st time.  Wow.  Chavi was impressed.  Improvement already!

Dr. Ashish expects it to take seven days to fully recover from this procedure, which will be just enough time for me to begin the next procedure.  I can’t help but think—I volunteered for this pain…but as the saying goes, “No pain, no gain!”  I am keeping the big picture in mind.  I shall walk into this hospital one day!

As I type this little/long communiqué—yes, I know, it’s long overdue…Mum has gone shopping with Val.  Val is here with Lorraine who has ALS and is also receiving her second HESC treatment.  Lorraine looks fabulous—I mean, she actually looks younger.  Remember, HESCs are an anti-aging remedy too.  Lorraine has stopped drooling, her face is more alert, she is walking with perky steps and retains her great sense of humor.  Mum, Lorraine and Val are all similar ages, so the girls get on well and their room is warmer than ours. 

Mum and Val entertained themselves with a little shopping experience purchasing shoes and clothing this afternoon.  Delhi is always under construction and sidewalks don’t exist, except in the more posh parts of town.  On one particular sidewalk, which was literally a foot wide, the two negotiated a deep rocky trench.  Having both made a purchase from a store they were rewarded with a gift in the shape of a small square white box. 

“What do you think ’s in this box?” asked Mum.

“It’s probably a condom.”

“That’d be really useful for us.”

Val exclaimed, “We could put it on our noses so we don’t have to breathe in the Delhi dust.”  And the two laughed hilariously.

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First two weeks, January 11 - January 26, 2008

Saturday, January 26, 2008 – Republic Day in India (and Australia Day too!)

Today the Australian headlines read:  Beer, Barbies and Babes.  Aussie, Aussie, Aussie…Oi, Oi, Oi…  I don’t think the Indian’s have such a chant for their holiday (or I haven’t yet heard it).  Every noise seems to be drowned out by constant horn honking abuzz with traffic zooming by and an aircraft roaring overhead.  Silence doesn’t exist in Delhi.  Now that I am a tiny bit more seasoned to the racket and frenetic pace of this absurd city, I’ve learned that peace must come from within.  I see it in every person on the street.  That calm equanimity and air of happiness emanates from the gaze of a homeless woman sitting on the curb; to the security guard in front of the hospital; to the auto rickshaw driver quietly sitting in seven lanes of smog-filled traffic.  In the four months I have been gone from this city, nothing has changed.  Delhi will always be chaotic, yet life flows here.  I am dumbfounded by this paradoxical dance…hysteria entwined with serenity. 

If a chant exists to celebrate Republic Day in India, it’s most likely permeated with “Om” in a rhythm that is more Godly and spiritual that resonates with the soul. 

Tonight, we’ll celebrate Australia Day with some Aussie friends foregoing the traditional Barbie for a still-somewhat-westernized-dinner of lamb minus cumin, coriander and turmeric, ending with a promised apple pie and ice-cream for dessert.  Yes, very Aussie, which my belly is hungry for after two weeks of curry.  Mmmmm.  I must say, with fingers crossed in fear of jinxing myself, that my clothes are stain-free of saffron and bright yellow curry.  Alex Shaw has invited us to dinner with her hubbie, David, and their two kids, Laura and Jack.  David has very aggressive and debilitating ALS yet he is putting up a stellar fight.  The family opted to sell their home in Australia and move to India to receive Human Embryonic Stem Cell therapy from Dr. Shroff.  It seems to be the only treatment that is keeping David alive infusing his life and his family with hope. 

January 26 celebrates India’s establishment as a Republic in 1950.  Mahatma Ghandi, India’s greatest advocate for a nonviolent passage to Independence from Britain, called the people to work toward independence on this day in 1930.  The celebration lasts for three days.  While Delhi never comes to a standstill, many of the streets are closed; a terrorist alert is imposed upon the city; a parade showing off India’s military tanks, missiles, camels, and elephants is broadcast on National television; and Dr. Geeta’s patients don’t have physical therapy!   Chavi was granted a day to sleep in.  Dur ing our PT session yesterday she mentioned that she had purposely requested her Mummy not to wake her this morning so she could rest in delicious heaven—a rarity for my blessed physical therapist who works diligently six days a week.  When I woke at 7:53 this morning, I prayed Chavi was sleeping sweetly and soundly.  One consolation for today:  I still get my daily IM (intramuscular) injections of stem cells, regardless of the holiday.  Later this week January 30th marks Martyr’s Day.  On this day in 1948 Gandhi was assassinated by a Hindu fanatic in New Delhi.  So, it’s a celebratory week and holy time for prayers and songs for our Indian friends.

I find it hard to believe that I am already two weeks into my month-long treatment.  I haven’t been in a mental space to write, taking my time to process many thoughts, and visit with friends from around the globe. 

This is our first day of rest.  Mum finished one book and is on to a James Patterson thriller titled: The Quickie.  I can always count on Mum bringing along a few James Patterson novels to pass the time away.  She especially loves his books because he sets the scene in four pages, making the rest of the read a page-turner.

Mum’s been here almost a week.  Tami Cassetty, my beautiful new friend and physical therapist from home, spent the first week transitioning me into Delhi and hospital life.  Tami was as awesome a friend I could ask for.  She really stepped up to the plate and had to drag me from my britches out of Basalt the day we departed in a full-on blizzard.  January 11^th was disastrous weather wise.  In fear of a cancelled flight out of Aspen, I scrambled to leave some five hours early as Gabrielle frantically stuffed the last items of clothing into my suitcase, and drove off with my sweet Tucker in the back seat.  (Thank you Gab).  Tami then drove us to DIA, braving horizontal snowstorms, icy conditions, and cross winds on I-70.  Even more courageous was Tami’s mom, who drove almost seven hours home to Carbondale that evening after dropping us off at the International terminal.  Our journey had just begun.  Twenty hours in cattle class was torturous on my already-spent body (United never granted my upgrade, which is a whole other story in itself).  My wheelchair hadn’t been tagged properly and was lost for almost an hour and half in Frankfurt, and to make matters worse, I realized my favorite silver watch had dropped off my wrist as I sped through the streets of Delhi to our hotel.  For a mere 600 Rupees my wr ist is now garlanded in a lovely Indian Sonata with a blue dial to keep track of time (it’s quite boring really).

Two weeks have sped by keeping up with Delhi’s frenzied pace.  I have been more social here than at home.  Robert Margolin appeared with his friend Elizabeth soon after Tami and I arrived.  I met Rob at The Stem Cell Summit in Boston last September and challenged him that if his mind was curious and he wanted to see what was happening in Delhi with Human Embryonic Stem Cells, then why not visit?  Without hesitation, Rob jumped on a plane and ventured out of the United States for the first time in his life.  Elizabeth is an intelligent, gorgeous, fun medical student and both she and Rob were an absolute delight.  Rob has come to feel like a brother.  His knowledge on the world of stem cells is astounding and he became an immediate walking encyclopedia I could refer to when a question or thought popped into my mind.  Rob’s link to his website is http://www.stemcellresources.org/index.html which dispels a ton of credible information on stem cells including general resources, teaching tools, news and journals, and policies and ethics.  It was a privilege to have Robert visit, meet Dr. Geeta Shroff and Dr. Ashish Verma, and see what is deemed by many to be the holy grail of medicine alive and working in human patients.  One cannot deny that every patient in this hospital shows improvement and one cannot leave this place with a changed mindset having witnessed both science and resilience of the human spirit at play and in perfect unison.

I look forward to further collaborations with Robert in the United States.  He is a mover and shaker, and entrepreneurial at heart.  It is reassuring knowing that such a young, enthusiastic, knowledgeable, and sincere individual has visited Delhi.  The mere fact that he understands me, Dr. Shroff, and will be a cheerleader rather than a naysayer for this treatment means more to me than anything.  Thank you Rob for taking the time out of your busy life, and money from your own pocket, to witness the little miracles that are taking place daily with human embryonic stem cell therapy at Nutech Mediworld. 

The social calendar has been “chocablock” as the Aussie’s would say, or “full-to-the-brim”.  CP Kanipe (my beautiful massage therapist from Aspen) and her husband Steven paid a spontaneous visit while touring around India.   I am so grateful that they took the time out of their schedule to come to the hospital, meet Chavi, record my physical therapy on video, and share some quality Delhi time with Tami and me.  I could tell that after travelling for ten days they were fed up with haggling and India in general.  Delhi pushed them to their limits.  After Steven’s shoes were stolen on a train to Agra to see the Taj, they almost called it quits.  Thank God CP has big feet as Steven is wearing her tennis shoes for the remainder of their trip.  They spent just one full day in Delhi opting to fly back to the South where warm beaches, tepid water, and cleaner air awaited. 

Delhi’s smog is awful and is far worse in the winter months.  The air is thick with fumes, my eyes sting, and I can’t inhale a full breath.  When I travel by tuk tuk (auto rickshaw) I wrap a scarf around my face doused with droplets of eucalyptus oil.  At night homeless people huddle around open fires on sidewalks to keep warm and cook.  Thick smoke infiltrates the atmosphere mixed with exhaust fumes and a gray-brown haze envelopes the streets.  Trees are brown and dusty.  Dirt hangs in space.  Cloudy days keep the smog thick like soup and I find it almost unbearable.  When the nurses take my blood pressure three times a day, I am amazed that my oxygen saturation is generally 100% or 99%.  I keep thinking it’ll drop twenty points but living at high altitude has obviously served me well.

Tom Eldridge flew in from the UK to film a small documentary from the patient’s perspective.  He will continue to document my journey over the next two years, following other patients and my progress and recording my body awakening.  He has been a wonderful to work with.  His nature is gentle, easy going and not intimidating.  It’s as though the camera is invisible when Tom is filming and he has the most creative eye as if the camera lens becomes a part of him.  Tom has interest in sponsorship from Channel Five and BBC in the United Kingdom to help fund the film, which is really exciting.  He might even create a short 5-7 minute piece so I can show the community a slice of Delhi and my treatment here at Dr. Shroff’s hospital.

Having Tami, my faithful PT at home, visit Delhi with me was absolutely perfect.  Tami and Chavi met and swapped Amanda stories chatting about my progress.  Chavi was able to show her some new exercises and in turn, Tami was able to share some new ideas with Chavi.  Tami was a perfect travel buddy and caregiver.  I appreciated having her company so much.  Each morning she would call home to her husband, her Mom, and her two adorable kids.  I loved hearing her chat as a Mommy to her girls, Megan and Maeve.  She asked about their days and sent them hug s and kisses from afar.  It made me yearn to have a family of my own one day.  Tami is a beautiful Mommy and it shows in her children.  My favorite comment from Tami while she was in India was:  “Where’s the beef?”  This is how I will remember Tami in Delhi.

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