Sunday, June 30, 2013

Day 61 - A Perfect Day!

We were whisked away in an SUV by Ajay, their driver.  He drove very well in the Sunday traffic.  We arrived at the Singh's home around 12:30.  Karan and Hema live with his parents in a beautiful home that they built 10 years ago in Gurgaon.

His mom, Monica, did the interior design and it was beautiful!  She currently works with textiles; various cottons and silks.  She has exhibitions twice a year where she sells her wares.  She advised me to get back to work as soon as I can.  Good advice.

His dad, Daljit, made a tasty homemade drink: ginger, lime, sugar, club soda and a few mint leaves.  It was quite refreshing.

They have the sweetest beagle.  Very cuddly and mellow.  He would fall asleep and then run in his dreams; so cute to watch his legs in motion.

A cute puppa!
We talked the entire afternoon. We told Ryan stories, dog stories and some travel stories.  Robbin showed them some pictures from his tablet of his guitars, one of my quilts, our family and the guitar barn.

Karan played his guitar and sang and then brought out a ukulele and was joined by his dad on the harmonica!  It was wonderful to hear.  So joyous.

Karan playing and singing
Daljit and Karan playing harmonica and uke
Hema served a delicious meal: chicken, potatoes, a yummy bean dish, cauliflower, cucumber and tomato.  Oh and roti!  Yes, I cheated.  They took extra care to make sure my food was cut to size.

AND THEN.... homemade chocolate ice cream made by Karan. Wow!!  I had 2 helpings.  Now I've had a lot of chocolate ice cream in my 55 years as it's the only flavor I really enjoy. And I've had it in the US, Belgium, France, Germany, Scotland and Switzerland, but Karan's was perfect - exquisite.  I wolfed it down!

Can you tell how much I like this ice cream?
We had such a nice time; very relaxing and enjoyable.

As if the above wasn't enough, before we left, Monica offered me a choice of scarves. I chose a multi colored, raw silk one with green, golden yellow, burnt orange, splashes of raspberry and gold trim. Priceless!

Monica and Daljit

A perfect end to a perfect day!


Saturday, June 29, 2013

Day 60 - Christmas for Ahba

Today was Saturday and after lunch we all went to "Asian Roots Day Spa." Robbin got a haircut and then went to the park across the street to read.

Ahba and I got haircuts, manicures and pedicures.  What fun!!  Ahba told us she has escorted many patients to this spa over the years and no one ever treated her to anything.  AND, this was her first professional haircut, EVER!  

She enjoyed being pampered and I enjoyed watching her.  When they were done with her hair it looked absolutely beautiful! Nails too.

She said "Thank you, Today is my Christmas." and smiled widely.

What can be better than that?

When we got back to NuTech, the women all noticed and she happily told them.

Thought for Today
Treat someone you care about to something special; it will feel so good.


First pedicure too.

Beautiful Ahba!

Friday, June 28, 2013

Day 59 - A Non-technical Overview!

This is a non medical, non technical update.

Everyone in India is so nice.  I meet new people all the time and they are all so friendly!

The staff at the hospital are all very caring and happy to help me.  And they help Robbin too.

I have seen very small improvements in certain muscles.  When I'm home I'm not sure if anyone will notice any difference.

This therapy will take 2-3 years to work, so I will need to come to India several times a year.  The trips will be shorter than this one.

The food is not great here, but it's hospital food.  They eat a lot of chicken drumsticks here.  Sometimes we order from a local restaurant and they deliver it.

Overall, I am happy here.  I work hard at my physical therapy to make my muscles stronger.  I will need to continue this at home.

Robbin is happy when he works on guitars here!

Ahba, my caregiver, is very loving & kind; always helpful.

Tonight's movie: Oz, the Great and Powerful with James Franco.  Fun!

Thursday, June 27, 2013

Day 58 -


Today was uneventful, except that lunch came at 1:30 which meant I missed my afternoon Physio.  Bummer.  I complained and "it won't happen again."

This was my last day of Tindazole IV until next Wednesday; I'm glad.

Robbin looked long and hard for a straight edge and found it online and the man actually delivered it!  He needed it to straighten a guitar neck.  Then he looked for some mineral spirits to clean the guitar, he searched high and low and on the web; no luck.  Then he emailed Karan, part time luthier, who sent him to a cigarette/cigar shop.  Bingo.

Speaking of Karan, he and his wife Hema invited us over to their home on Sunday afternoon for some home cooking!!  Wahoo, I'm salivating already! And Karan's parents will be there.  So excited.  

(Hema, if you're reading this, I'll eat anything!  And I'd love to watch you cook, if possible.)

And Saturday, much needed haircuts for all.

Tonight, Jackie Chan and Scandal.

Thought for the day:

"If you get, give.
 If you learn, teach."  - Maya Angelou





Wednesday, June 26, 2013

Day 57 - Wake Up!

Last night I felt like I had a fever, but when they took my temperature under my armpit it only registered 97.9.  I was fatigued (like a ton of bricks), some aches and my eyes hurt (which always accompanies a fever in 'my' body).  They gave me some Motrin/Tylenol combination and that helped.  In the night I broke out in a mild sweat.  So, a fever with no supporting temperature data?!

This morning, my temperature was 96.5, so I had a bit of something.  I'm taking it as a good sign - my immune system is waking up.  Dr. Geeta agrees!  Happy.

Rough 2 days, definitely herxing from this combo of antibiotics.  Muscle weakness, fatigue, OM's and Naga's not as clear.  And this is from the girl who never recognized a herx!

For my Lyme friends, I'm on:
Tindazole IV - 3 days on, 5 days off.  400ml
Minocycline - 30 days on, 7 days off.  100 mg am & pm
Taxim IV - 5 days on, 2 days off. 1 gram am & pm

Vitamin C - 10 ml twice weekly

Today they started me on the Vitamin C IV today. 

So besides my morning PT, a procedure injection near my tail bone (weird) and another procedure for my gut, I've been on IV's most of the day.  And with each new IV, they do a test dose.

Dinner was lamb keema which we enjoyed.

Scandal & A Person of Interest.

xo



Monday, June 24, 2013

Day 55 - Antibiotics Back On

Today, they started me back on antibiotics.  Geeta stopped by and I requested IV antibiotics, as much as possible, to avoid my gut. 

For my Lyme friends, I'm taking IV Taxim O (Cefixime). This is comparable to Claforan (Cefotaxime).  Both are 3rd generation Cephalosporins.  No Rocephin given my existing gall stones.  They are seeing if they can get me Tindazole IV.  Hope so.  I'm also on Minocycline pills as it crosses the blood brain barrier.

I had stem cells in my arms, cheeks, neck, hands and via IV.   Routine now.

Robbin went to the ENT doctor and he took a huge piece of wax out of his left ear - baseball size, he claims.  They also gave him antibiotics.  He's on the mend!

TV - Aliens in the Attic, Scandal (my guilty pleasure)!
Thought for the day:

If you are ill, visualize yourself doing something you can no longer do.  I go swimming often, sometimes in Churchill Lake and sometimes in Aruba with MaryBeth.

Sunday, June 23, 2013

Day 54 - Slow Sunday

Nothing much happened today.  Slept 'til 10:00; nice.

Two IM stem cell injections one in each arm.  I should look like 'The Rock' already, but I don't.

Watched some movies, but none worth mentioning.  Played lots of WWFs.  Love it!  Walked the halls for some exercise.

Robbin has an earache and took a nice nap.  He'll see an ENT doctor tomorrow.

Dinner was skimpy so we ordered some take-out (after we ate our dinner) and it was delicious!  Tandoori Chicken, Mutton Seekh Kabob & Crispy Chilli Potatoes. I'm stuffed.  

Thoughts for the day:

Think positive, happy thoughts.
Love yourself.
Get more than enough sleep.

Saturday, June 22, 2013

Don't worry, the dog in these pictures is not dead, he's just really comfortable

A couple of days ago I walked in the afternoon.  Usually try to get out by 10, although 9 is better.  I manage to walk at least 3 miles a day even in the, oh so, hot weather.  It takes about 2 liters of water to do it.  Sometimes more.  Sometimes I go out in the night but it is the most crowded then and if it isn't crowded, it may not be safe, although I've not felt unsafe for one minute here.

The shops don't open until 11, but people are generally getting ready by sweeping, the aforementioned favorite pastime.  That afternoon the dogs were all rather sedentary.  There are dogs everywhere.  Usually lean and short haired and free as birds.  They walk around like they own the place.  Although usually alone, sometimes they walk in couples or trios, but always indifferent to people around them unless they see a treat coming their way.  One has dug himself a crater in the dirt under the bushes and sleeps there all the time - I think it is cooler.  It is really hot.  I mean really, really hot.

Anyway I'm walking in the street, the sidewalks are either nonexistent or have cars parked on them and there's this dog.  Sleeping half on the street half in the parking lane:
Later coming back, he must have gotten hot there so he moved here:





Both times he's out cold.  Sleeping soundly.  Like there are no cars going within a foot of his head, like nobody is beeping.  Like nobody is walking around him.  Taking a time out for a dog nap.

I've seen two long haired dogs so far and they had dreadlocks.  Really mangy looking mutts.  In the main, the dogs that look like they're doing well have the dingo look.  None too large, none too small. Darwin could do a case study.  A pretty happy, bright eyed bunch. 

Speaking of happy, I saw a 3 year old in a stroller pushed by his grandma and grandpa with a cookie in her hand.  She had a euphoric expression on her face and was looking at that cookie like it was the key to happiness.  Then again, how much better does it get when your grandparents love and spoil you, buy you a cookie before dinner, you are lounging in your moving easy chair and you know your grandparents will do whatever your 3 year old heart desires?  It doesn't get better than that.

Later I saw that some people got a brand new car and parked it right outside the entrance of the temple to get it blessed.  The temple guy (not sure of his title) had the hood open and was smearing something on the valve cover - anointing it with something pasty looking.  The whole family turned out in their good clothes, 3 generations by the look of it.  I guess that's where I went wrong with my '88 Dakota - it had it's spare stolen, broken into at the train station and had the starter switch broken by a thief who couldn't start it so he couldn't steal it.  For a while, it always stalled once after it warmed up and had a key broke in the door.  Thus I had a left door key, a right door key, a starter key, a key for the lock on the bicycle cable around the spare and one for the cap on the bed, all different keys.  If only I had known to go to an Indian neighborhood and start it off on a better footing.

For you contractors out there reading this, I watched a crew working raising floors on a tallish building.  Someone dropped loads of stone, sand and cement on the street - big piles of the stuff.  They had a mixer that raised a concrete buggy up the side of the building 6 stories and tipped it into a trough where I assume the other half of the crew put it where it belonged.  The crew I could see were structured like this:  2 sets of 4 guys, one set for gravel, one for sand:  one guy used a shovel that looks like a giant hoe to fill large, shallow wicker baskets and help them onto the heads of the other 3.  One guy has a bucket and adds cement and another guy is the mix master - he adds water and directs the sand and gravel and cement guys.  3 baskets each of gravel and sand, 2 buckets of cement and enough water made a load.  When it is ready, the last guy turns the mixer all the way back and it's load fills the buggy and it shoots up and dumps.  Everybody had a job and they managed to stay out of each other's way and had the buggy going every 3 or 4 minutes.  It was almost choreographed.  They were really working hard and it was 110 degrees out.  I imagine slackers were never hired back.  I was happy to watch.

I keep asking the sisters here at the hospitals if they wouldn't get some brothers (male nurses) in an effort to bring balance to their organization.  Here's a picture of 3 sisters, Abha, Deb's aide:
Deb is in bed and didn't want to be in the picture.  They all think out loud and liberally communicate with each other.  I try to stay out of the way and ignore the pandemonium until I hear "ROBBIN", probably not the first time I was called, which is my cue to look up and see what is going on, determine what only I can do and then do it.  Immediately the chaos returns and I go back to my newspaper, email or ebook, whatever I'm trying to bury myself in.  Which gives you the reason I try to get up, dressed, fed and out before they all converge on our room, if I'm lucky.

Day 53 - Out & About

I had OT & PT for 30 mins each this morning; Saturday hours.  Then back to the room for a short while and they came early for my gut procedure and PICC dressing change.  Lifted up onto the gurney; I'm getting use to it.  It only took 25 minutes and that was door to door!


Lunch was yummy.  They call it Butter Chicken but it reminded me of Chicken Tikka Masala.  Afterwards, Robbin called the front desk for an air conditioned taxi for 1:30.  We had it for 4 hours.

We went to the mall.  Actually two malls (Ambiance & DLF Promanade) as they are attached.  Robbin bought a shirt and pants and I bought 2 tops - all from a store called Pantaloons.  It was so loud as they play music loudly.  And I can't really scream, Ahba had trouble understanding me and Robbin has a plugged ear.  What a threesome!

We also bought food; snacks really. Cheese galore for me (sheep feta & 2 varieties of goat cheese) and some dark chocolate light on the sugar - don't want to feed the Lyme!  Also some lemons & limes for my water. Ahba likes the feta and goat too.

Robbin bought gluten free animal crackers, a variety of potato chips & corn chips.  We are stocked!!

Tonight at 6:00 pm, I took a shower; an hour earlier than recommended due to my previous epidural procedure.

It was a fun day. :-)

Dinner was Chicken Biryani and Raita (but only a little as its cow's milk). Delicious!!

Some TV - more Jackie Chan plus "Unbreakable" with Bruce Willis.

Some WWF and off to bed soon.

xo

Friday, June 21, 2013

Day 52 - I know, I know, I know


Early on in our friendship, Ahba told me something to do one too many times.  It might have been to sit down slowly, which I had no control over.  I was a bit annoyed and said "I know, I know, I KNOW!"

Well, from that point on, whenever either one of us says "I know", we say it three times and laugh.

We are learning a few words in Hindi.  "Namaste" is a greeting.  I already knew that from meditating with Deepak Chopra.  Ok is "teka."  And that gets followed by an "ah, cha, cha."  Robbin knows much more.

                               ****************************

Today, I had 3 more "top-offs" of stem cells, a vitamin IV, 2 small antibiotic IVs, and stem cells via IV, IM, nasal & dribbled on my tongue.

About an hour after my final "top-off" the sisters removed my catheter; yippee!

I had a morning visit from 2 head doctors as I had written to Geeta last night that we hadn't met in a while and I was wondering when they would start the Lyme antibiotics again.  I've been off for almost 2 weeks as I had some oral thrush.  So we discussed which ones I wanted and I told them about Dr. Fein's recommendations from the US.

This impromptu meeting made me late for PT, but Varun had no one after me so it was OK.

Today, while on my back, I listened closely to Arlo Gutherie's "Alice's Restaurant" as if the story would somehow change.  I also relaxed to Joan Armatrading, Leon, Steely Dan, James Taylor and more.  

TV - a Jackie Chan repeat and ...... Scandal. 
xo 

Thursday, June 20, 2013

Day 51 - Thought it was Wednesday today

Guess I kind of missed a day!

Today, I felt better than I had after other catheter procedures; a welcome surprise!


Did my morning PT where Varun had me stand for about 5 minutes and then close my eyes for a few more.  I sway a bit, but not much.  He stands close, just in case.  Been doing this for about a week but I forgot to mention it.

In OT, Swati added some tongue exercises and 1 additional sound now that my OMs are clear.  I also now play with Playdough!  Pinching small bits off with my fingers.  


After that I went to the injection room and received 2 injections in each hand, one IV, one in the back of my neck and one in each cheek. But this time the doctor (Avinash) injected me in the sunken part of my cheeks to which I smiled and said "Botox!"  He laughed.  He gave very nice, painless injections.

With the catheter I have 3 "top offs" of stem cells daily which are administered with a pump.  Takes about 10-15 mins with setup and then I need to lay on my back for 30 more.  Plus 2 IV bags of Augmentum daily because of the catheter.  

Oh and 2 IM injections in my upper arms at some point.

So given my schedule there was little time for much else!

TV - Brave (computer generated animation) and Scandal.  

Saturday we plan to go to the mall after my gut procedure.  I'm looking forward to it; I haven't been out in a while.

Cheers!

Wednesday, June 19, 2013

Day 50 - On my back

Had procedure with epidural at 12:45 and now have the catheter for 3 days.  It hurt on entry, which was unusual.  Also hit a nerve in my left leg-creepy.

Spent the afternoon on my back.  Lunch at 4:15.  An extra vitamin IV was ordered and given.  Then back on my back at 5:30. Ugh.

Not much else. xo

Tuesday, June 18, 2013

Day 49 - It's a tie!

I didn't want to speak too soon, but it's official - my right leg has caught up to my left leg and is now at 3 kgs too!  Baby steps, literally.


Today's stem cells involved 3 nasal sprays an hour apart. But it's not really a spray.  I tilt my head back and they squeeze a small container, but it just kind of dribbles out.  I then snort, so it goes to the right place.  Too much information?  Maybe.

Also, stem cells squirted on my tongue, IM in my arms and IV.  

                                            *******************

Abha's son, Nanu, has been trying for 2 weeks to be admitted to school.  His school ended at 10th grade, so he needs to go to another school to finish up 11 & 12.   You'd think this would be automatic, eh?  People with money makes donations so that their children can attend.  So Nanu was told "No" at several schools, even an hour away!  He would go daily to ask.  Yesterday, Ahba went to the school and got him in.  Moms rock!

Nanu will take 3 classes: English, Political Science & Math. He really wanted PolySci as he wants to change things in India.  He struggles with Math, but Ahba says he needs to study.  His classes start at 1:30, girls go to school in the morning.  We are all happy.

TV- Two & a Half Men, Scandal (on M-F). And there are commercials for Revenge starting in July (M-F).  They must have heard I was here!






Monday, June 17, 2013

Day 48 - It's a Numbers Game!

What on Earth is this blog post about?  Numbers...hmm?

During Robbin's 20 year career at Roche he was either in Clinical Development or supported them.  He had the privilege to work in Sam Given's organization for part of that time.  Friendships bloomed with many statisticians.  Over the years, I met Sam on occasion - the last time was at the Roche gym one early morning before work.

During the attacks of 911, Robbin was in California on business.  Robbin was actually on that same flight, 2 days earlier; Carlson Luck for sure.  When the meeting was over, Robbin called Sam for advice.  Sam set him straight and told him to 'stay put' and recommended "The W" in San Francisco (a very nice hotel)!  Roche discount, of course.

So... Number's game?  Sam?  NuTech?

Have you figured it out yet?

YES!  Sam is coming to NuTech for a week to work on the statistics for Geeta's clinical study reports.  He will arrive on July 1st.  Can't wait to see him!

Early on, Robbin mentioned to Jyoti, NuTech's Manager, that he had worked at SPSS, a prominent statistical company.  Jyoti was familiar with the name as they use SPSS here.  She mentioned it to Geeta who stopped by to discuss.  At first she thought Robbin was a statistician, but he quickly explained his software development background.

During the conversation, Robbin told her he new someone. He looked at me and said "Sam."  I shook my head and smiled wide.  She saw the glance.  Robbin introduced them by email and the rest you know.

Geeta announced today that the small PT room is off limits for several weeks as they are modifying it for Sam. 

"I love it when a plan comes together!"  Hannibal - "A Team"

                                          ***********

As for me, stem cells in my arms, hands, cheeks and neck.  I have a procedure on Wednesday for the 3 day catheter in my spine.

TV - a Lara Croft movie and another with Jackie Chan (love him), and then Scandal (new to India) ... Yahoo!

xo