Elaine In India

Sometimes you don’t know what you’ve lost until it returns.

I was in the car, a new car not the normal old ambulance that was my usual ride to a Spect Scan here in India.  My mind wondered.  It could.  A feeling of curiosity got the better of me.  What had changed in my brain over the past year?  What did the stem cells do on their own?   I was feeling good and healthier than all the previous Spect scans combined but lyme is a roller-coaster ride.  Was there really a change, healing in my brain?

We had left behind the parts for the city I knew or recognized.  A hospital, Fort Hospital, some place new for this Spect scan. I still do not know why. However, that was not important at the time.  I had been waiting for this Spect scan for months now. Back home the insurance company, the one that paid for my first Spect scan no questions asked, was trying to weasel out of paying again.  They paid for one, a year into illness, and one would think they would have no problem paying for another, years later, to check for improvement.  Nope.  Instead, they insisted on a second opinion, at Stanford nonetheless.  A waste of my time, energy and it would definitely cost them more money.  My father is still telling them this in the appeal, out of principle and in hopes, it will help the next person.  After all, India was already in the works and a Spect scan here is the same quality as the US and much more affordable.

None of this matters now though as I focus on just breathing one breath at a time, clearing my mind, only happy healthy thoughts.  The man sang while putting in the I.V., smiling as he worked.  He took good care, a former military man from the state neighboring the sisters’.  It was a quiet room.  The lights were turned off and the tracer injected.  To my surprise, the lights stayed off and all was relatively quiet. 

The scan went smooth. I didn’t move.  Bang! The doors were thrown open, some jabbering in Hindi and the lights turned on but still I lay there.  Unsure whether the test was over, knowing from previous tests in India, to stay still until you are told otherwise.  A sharp voice, “get up now,” not loud just stern with intent. I moved off the table and waited.  The doctor said it wouldn’t be long.   Unlike back home, the test here was processed and read within an hour.  Next I saw the doctor, a smile of amazement across her face.  “Very good and almost normal just one spot left.”  We were handed the reports.  There was another lady there with two children.  “She too is being treated with Dr. Geeta Shroff’s stem cells,” said the doctor with a nod toward me.  The little boy pulled at his second I.V. as we talked.  Explaining to his mother, “give it time, the stem cells work, just give it time, and stay positive”.  We continued to talk as we walked out.  “Are you married?”  She said “Is she married?”  The lady then turned to my mom, such an Indian question to ask.  I always want to say I’m only 19, but to them that is not too young to think about.  We said our goodbyes and thank yous.  The ride back to the hospital was a crazy one.  Not even the sight of a bad crash slowed this driver. 

Back at the Nutech, Dr. Geeta greeted me so quickly there was no time to sign back in.  After a hug, she immediately spread the reports from all of my sect scans across her desk.  5 circle, 3 circle, 3 circle “but with change” she says as she circled the number of spots with decreased profusion found on each scan, 1 circle.  “Look at this, one minimal spot left.  Wow!”  Looking at the tests and the circles Dr. Geeta was drawing I could remember the feeling I had during each one.  A numb feeling the first two times just trying to get through yet another test. The third and forth scans I just tried my best to breath and be in a good place though still numb emotionally. Again trying to get through the test tentatively optimistic but still knowing the long road still lay ahead.  This time was different, with a clear brain it was much easier to be present and focused for the test.  I had regained a confidence not only in myself but also in that there has been a change, a good one, a big one.  “Get the doctor on the phone, I want to just check with her.  Just minimal” she said questioningly into the phone.  “Wow! She says there is something so she had to put it on the report but minimal and everything else looks normal.”  Remembering as Dr. Geeta told me this… I can read, I can write, I can remember, I can listen, I can talk, I can laugh and smile, I can articulate, comprehend, enjoy, and I CAN.  An improvement, my quiet confidence is back and building.  Still I believe I have a road ahead but I’m on the right one, a bright one.

Waiting I fell asleep. The combination of acupressure, done by my mom, and breathing did the trick. As relaxed as I was it was a nervous sleep. Questions… pictures… needles whirled in my head. It was a procedure day, my first of this trip and much had changed. A caudal procedure, the one that was scheduled this day, is low toward the tailbone area, an injection of two syringes of stem cells.

My body remembered the feeling of the previous caudal procedures I had had. My back remembered the spot and twitched. Between my second and third visits, feeling and sensation returned that I never knew I had lost. I mostly noticed in my hands and feet also my back was included. During my last visit, I was in constant pain, however now most days my pain was completely gone. I was unsure how or if any of these changes would affect the way my body would react to the procedures. My pain tolerance had always been high. Even though I had been through this procedure several times before, I’ll admit I was nervous and a bit scared. Caudals were the hardest on my body but I had a good feeling about this one.

On the table in the Green Park OT, the OT staff chatted to me. It was my first time in this OT, previously procedures were done at the other hospital. All the nurses were the same so I was comfortable as we joked. There is something to be said for knowing the people who are in the OT with you. Even if you are nervous or scared, it’s comforting to see familiar faces even if they are wielding needles. It was a few days before Diwali and everyone was excited for the festival of lights. Dr. Ashish was prepared with his list of questions. The caudal procedure targets the lower body and that was his plan. Dr. Ashish felt around my lower back and tailbone area. He picked a spot and cleaned the area. He was describing the festival and the different rituals. “Okay I’m doing the injection now,” he said. I held as still as I could telling my body not to react, as much as it wanted too. The feeling of pressure more than pain began to flood my lower back and moved down into my legs as the local anesthetic was injected. Not a comfortable feeling, as my lower back and legs went numb. My body was sending panic signals that I fought off. Dr. Ashish was back to our conversation about Diwali. “Did you get crackers?” He asked referring to the firecrackers that would soon overwhelm the city. “No… they are a little dangerous,” I replied, “I’ll leave that to the pyros at the hospital and the neighbor and the kiwi’s this year.” I said laughing. I had totally forgotten about being nervous or scared, although I could feel a pinch every time he touched my back for the injection. The one drawback of our conversation was I’m laying on my stomach on a table that’s bent in the middle so my back was curved. My head was lower than my feet so it feels like I’m falling off the table. Nurses are holding me at my feet and back so I can’t move. Dr. Ashish was making me laugh so I was moving a little bit when he says, “Okay another injection.” I haven’t quiet finished laughing when I feel another pinch. Good thing Dr. Ashish is used to patients moving on the table because I don’t like the idea of moving when there is a needle in me. Another pinch.

I felt something being put on my back then Dr. Ashish says “all done, good job.” I was taken back to my room. Bricks, two of them, were put under each foot of my bed to elevate my feet and I was left to lie on my back for the next 4 hours. To my surprise when I rose, my back was not as sore as I expected. I decided after my first procedure that any discomfort, pain, bruising, or soreness that came with it were well worth the improvements I got from the stem cells getting the direct route to the damaged areas. So the soreness and bruises I got every time after were welcome. However after removing the bandage this time neither my mom or I could find a bruise at the site there was barely a mark.

Something new happens right after each time I get a procedure. Little, big, or unexpected it doesn’t matter but it’s very welcome. Was it just a good procedure, had Dr. Ashish just found the right place or was my body really healed to the point it no longer over reacted? My next procedure is in a week, I’ll have to wait till then.