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Pageviews by Countries Entry Pageviews United States 765 India 59 France 35 Switzerland 16 South Korea 13 Germany 8 Canada 6 Russia 5

This is a look at the blog viewership, by week.

Karen, I know you are in France, but who else?  Is Mimi there?

Am I interesting to those in Russia, Canada & South Korea?  I know there is Lyme in Canada.

I wish the blog comments worked better.

Day 31 - Overwhelming Exhaution

I had a very good night's sleep and woke up feeling rested.  I was given 2 stem cell injections before breakfast - one in each upper arm.

It was only 84 degrees at 9:30am, so Robbin went out for 3 hrs - came back and drank water.  He is always good about taking water with him now.  He had a bit of a headache, so he took some new meds.

I went to PT where I walked without my walker, but Varun was very close behind.  It's not that I can't walk, but I'm scared of falling down, having fell 5-6 times.  Frank - now I regret not coming to your dojo to learn how to fall properly!!

After PT, I had a 15 min break and then OT.  I almost feel asleep in OT!! Overwhelming exhaustion set in.

Back in my room, I did some emails and then slept briefly until lunch arrived.  

After lunch (chicken legs again!) I was told the doctor would change my PICC bandage today in the Operating Theatre. I am going there tomorrow for a procedure, so the manager in me objected. I tried to explain that it was a wasted effort all around.  Three sisters coming to get me on the gurney - bla, bla, bla.  The sister called and rescheduled.

The head of housekeeping/meals, Bani, stopped by.  I had told last night's doctor that I was hungry, so Bani will now provide me with an extra 1/2 portion for lunch & dinner. She offered me a whole extra portion, but that would be too much.  She is pretty with very long hair.

I had my 3 hr vitamin IV and listened to music while dozing on & off.

The chef stopped by. First time!  He asked if I liked the food.  I said "Yes, but the chicken is sometimes tough."  Figured he didnt know. He said he'll order a better cut of meat. Wow!  We shall see.

Dinner, more emails, TV and blogging.

xo

Day - 30 Short & Sweet

Quick post as I'm pooped.  This week Varun has increased some of my PT sets and weights.  Now 2 sets and 50% more weight on left leg; I tried the right leg and I did it, but it was too much.

I asked Varun to re-measure my muscles today, but there was no change.  I was disappointed, but I bounced back already.

Had trouble falling asleep last night, so an early bedtime for me.

Robbin felt well today and went out for a short time.  On Saturday, we may go to a mall to find more gluten free items.

Today I was very hungry - they say that's a good sign.  I'll take it!

Robbin's retort

Dear Deb,

I can't believe you'd write all the mushy stuff for all to see.

Yes, our first conversation was about who was going to hang my coat. I did interview in two groups and I choose to work with you because I thought you were a cool 40 something year old -- in my naive world, only older women grayed.  But I was smart enough to keep that thought to myself.

We both have done myers-briggs tests.  We don't share any letters.  I do like quiet time and you do do like to be social (introvert/extrovert).  I think things out, you talk them out.  This is definitely a case of opposites attracting.  I must say that I made the exact right choice with you because I'm much more than I'd have been without you.  I've done so much more and met so many more people.  On big things we've got the same inclinations.

Imagine if you were more like me?  We'd never go out, never invite people in.  We'd go to work and come home and listen to the radio and read.  I'm sure I wouldn't be in India right now, wouldn't have a wonderful farm, wouldn't have lived in NJ and worked for Roche, the list goes on and on.

You keep getting mushy on me saying I'm doing a good job taking care of you.  It just isn't that true.  For the basics, yes, but we actually had to hire out to enlarge Team Deb. The lyme has not diminished your capacity for ideas, just the number of hands that can carry them out.  You're still Deb in there.  So our lack of common Myers-Briggs numbers gets in the way - I like to finish one job and then do the next, quietly without too much discussing.  That's what makes me a good picker-upper.  So basically, I still can't keep up with you.

I am also the carrier of hope.  I'm sure you're getting better.  I was sure you were going to get better.  I'm your biggest supporter and fan.  Being here in India, it is all the more easy to know that.  Everybody here fully expects you to get better.  My phrase has always been that when you get better, you're going to cook for me morning, noon and night for a year.  You can get up and make me breakfast and go back to bed.  I'm sure coming out the other side of Lyme, it will be no big deal.  I'm also pretty sure that eventually the night before you'll put out a bowl and a box of cereal and say, there's breakfast.

Maybe I could get mushy, but it would be totally uncomfortable.  Let my actions speak louder than my words.  I'll always be there for you.

Love,
RC

Day 29 - A procedure where the sun don't shine!

I was told last week that to help my malabsorption problem I would be given stem cells via my rectum. It was in the back of mind since then, as I'm sure you can imagine.  Well, so there is no more suspense - it was a piece of cake.  Phew!

While I was in morning physio & OT, Geeta stopped by with a crew, but I missed her.  ;-(

My procedure was scheduled for 1:00, but they were late.  As we waited, we had a visit from Lola from Texas.  She arrived a few days ago with her husband who is being treated for Parkinsons.  She had been here 4-5 times with her daughter, now 40, who is a quadriplegic.  I told her she looked 40!  She said it was her dye job.  Lola is a retired Early Development college professor.  She grew up in Ohio.  Her husband, Eddie, still works and will retire next year. They are only here for 2 weeks as that's all the time he could get off from work.  They will be back in February. When they were here with their daughter, Eddie was having issues. Geeta sent him for a thorough work up and diagnosed him. Since they were only here for 2 weeks at that time and 1 week was spent doing tests, he was treated for only one week.  In time he noticed positive changes, so they are back.

Lola told us about some local sites in New Dehli. It was a very nice visit.

Another Lyme patient arrived from the US but we haven't met them yet.  Not sure where they are from, but on Sunday they left at 4:30 am to visit the Taj Mahal which is 4 hours away! 

OK, back to me, me, me. The crew didn't come for me until 2:15.  It was done in the Operating Theatre so I was lifted onto the gurney in my gown and flowing pants.  I was wheeled onto the hot elevator - I believe the sun shines down on it and there's no A/C in that elevator.  

First, they explained the procedure to me - clean the area, insert the catheter, inject the stem cells and flush the catheter with saline, so we don't waste any precious stem cells.  A sister washed the area (10 secs), inserted the catheter (5 secs), injected the stem cells (5 secs) and flushed the area (5 secs).  Oh and yes they removed the catheter!  So it was very quick and painless.

After I was back in the room, I needed to lay flat for 10 mins.  I fell asleep for about an hour.

After I awoke, Ahba reorganized the wooden cabinet, at my direction, to make more room.

Tonight I am watching a very young Jackie Chan in a comedy.  It's funny.

Robbin was under the weather today with a headache and nausea. They gave him a pill but it didn't work.  Then another pill mid afternoon and then we went to see a new doctor who was in for a few hours, named Manoj.  I said "I have a friend by that name at work!"  Manoj put hard pressure on Robbin's neck with his fingers to restrict the blood flow for a bit. Robbin said now his neck hurt!  This continued and Robbin thought he felt better, but when he got back to the room, he did not.  

He was reading for most of the day.  Tonight, the headache has subsided.  :-)

We are in India for 1 month!

Day 28 - The Arrow was dead on.

On March 17, 1981, a man walked into Bankers Trust Company at 280 Park Ave in NYC for an interview. Two interviews, in fact; one on the 6th floor and the other on the 8th (my floor). He had sandy brown hair and wore a camel colored wool coat, with deep pockets as I would learn in the coming year. He carried an old fashioned valise, borrowed as I would later discover.

I was immediately attracted to this innocent with a reddish brown beard.

With a smile, he said he was here for an interview.  I got up and offered to take his coat to hang it in the closet. He smiled, declined politely asking where he could hang his own coat.  Even at that young age of 23, I had to have my own way and we had a brief tug of war. At least I think we did, because just then - Cupid shot his arrow.

It would be a Monday when this man asked what I had done over the weekend.  Wanting to seem very available, I told him "Nothing."  A few minutes later, my future maid of honor walked in saying "I was calling you all weekend, where were you?"  Busted.  Did he hear her? I did not know as he was deep in thought, typing on a CRT.

On a Friday night sometime around the beginning of 1982, a midnight bowling event was being held in the Bronx.  Several BTCo friends were going.  The day before, this man offered for me to stay over (on the pullout sofa) for convenience.  I said "no thank you."  The next day, I showed up with an overnight bag as I had changed my mind. I did not know then, but this man went home at lunchtime to clean. It was not possible in that short amount of time.

When I went to his 3rd floor apartment on 53rd & 8th, I met his college roommate, our future best man. His future wife lived there too.  Soon after I arrived, I began washing dishes as every dish was out (with dried food attached).  It was a tiny "row" kitchen with a wide counter that opened to the living room.  We both cleaned and it was done in no time.  Teamwork, a good trait.

After a fun evening of bowling in the dark with friends, we took a taxi back to this man's Manhattan apartment. On the way, I rested my head on this man's shoulder.  What did he think?  To this day, I never asked.

On my next visit to this man's apartment, it was spotless.  I was surprised and impressed. This man cooked a wonderful dish of Chicken Kiev.  Cooking, another good trait.

On April 20, 1985, sitting in a limo with smoked windows, I spied on this man in his blue suit as he walked across the street; smiling as he met his friends in front of the church.  He was happy and I knew then that this was right.

Years later, I am to learn about this man.

This man is a bit of a loner. This man needs space. This man needs time in the morning to fully wake.  These things are not found in India.  This man misses the farm; the spaciousness of our home; his guitar barn; the view of the lake and woods.  This man forfeits all this, for me.

Sometimes when I cry at night it is because my heart is overwhelmed with the love this man has for me. He thinks I cry because of something he has said.  This is sometimes true, but more often from his true love for me.

Now, he knows.

Day 27 - A day of many tests and chaos, India style!

I awoke to a sister knocking at 8:20 to do my IV antibiotic due to the PICC procedure.  It took about 20-25 mins.  At 9:00 I am expecting a technician from the outside to draw blood.  I need to dress, etc as a taxi is expected at 9:15.  No breakfast or water as I will have a CT scan of my stomach area.  Not a PET as I said yesterday.

9:15 we are in the lobby.  No taxi, we wait.  And wait. And wait.  Geeta's mom arrives in a ambulance instead of a taxi, so this is offered.  The front seat is very high for me.  Robbin picks me up but does not hear the warnings of those around to watch my head. Bang and subsequent tears, but we are on our way. 

We get there and the driver parks about a foot away from higher ground. I try but cannot as the ambulance is high. I ask him to park closer so I can step down. Ahba translates and the driver turns the car around and puts me on a slope that I cannot maneuver.  They get me a step that is now on a slope and with trepidation I get down. Phew!  I am wheeled into my appt about an hr late. 

I wait as Robbin registers me.  Once done we wait another 1/2 hr until a technician comes out with a bottle of fluid for me to drink. 3 glasses in 15 mins, then another glass in 30 mins and another after 30 more mins.  I am disappointed and hungry as I drink.

After the last glass, I ask Ahba to tell them I am ready.  Unfortunately, there are a few ahead of me, so we wait... and wait.

It is now 12:30 and I need to be back at NuTech by 1:00 for my 2nd of four blood draws today. Ahba tells them and we wait.

Finally, it's time!  Hooray.  I enter the room and I'm asked to drink another glass of liquid, ugh.  I am helped to lay down.

They put a tourniquet on my wrist in an attempt to insert something but they did not.  They wanted me to raise my hands over my head but I could not. They proceeded to set the table in motion so that I would be in the CT unit.  The tourniquet had a metal piece on it so I yelled and they stopped. My hands and arms were under a blanket so I had to maneuver with frustration. I think they thought I was in pain from the tourniquet but I was afraid of the metal.  The test proceeded and took 5 mins.  They injected a medicine into my vein 1/2 through, leaving a butterfly unit in me.  I asked why they did not take it out. "In 10 mins" I was told.

Out in the lobby we decide to go to a small cafe next door as Ahba brought yogurt from NuTech for me. And I am hungry as its 1:00.

Back in the lobby we wait for someone to remove the butterfly.  They come, remove it and we depart by taxi.  It is now ~1:15.  We get back to NuTech at 1:30. We missed the technician.

We arrive and the sisters want me in the injection room for stem cells. Ahba listens & I remind her of my very full bladder!  We go to the room. Then I ate lunch and then went down to the injection room as Robbin lay sleeping.  Poor guy was up all night with Dehli Belly again.  And he had a headache from no food.

We slept on & off as Ahba read.

The rest of the day was uneventful - thank God! :-)

xo

Day 26 - Sunday Snoozing

Today is Sunday and even though I still had the catheter in, I awoke (at 11:00) with zero discomfort.  Yeah!  I had 3 top-offs of baby stem cells today via the catheter. Each time I had to lay flat for 30 mins afterwards. The infusion tires me so I slept on & off.

Another lazy Sunday watching TV and listening to iPod (Bela Fleck, Joan Armatrading, Leon Russell, Cat Stevens, Jim Croce, and more).

Sisters hung out a bit, Esther is especially bright & outgoing.  Marriage material for some lucky man.  Robbin & I both enjoy her perkiness and humor.  All the sisters are always on my side.  Robbin needs some 'brother power.'

They took the catheter out at 7 pm our time. As it was being pulled out I had that same pain in my left leg; definitely a nerve. I had to lay flat, yet again, for 15 mins.  Too bad as dinner had just been served!

Tomorrow morning I will get a PET scan of my stomach area to help determine the cause of my malabsorption issue.  Such things as 'not enough protein' are being discussed. On Friday I had some blood work: total serum protein, CRP (maybe?) & one other. My days at Roche supporting the systems in the clinical pathology lab are long ago!

Tomorrow at 8:30 am someone from the outside will come to take my blood for some other tests.  

I'll keep you posted!

Day 25 - More About Ahba

Ahba has so little, but she has so much.  

Ahba lives in a 1 room apartment (bath outside) with her 2 sons. Amid is 19 and Nanu is 15.  She pays 3500-4000 rupees for rent and often does not get water.  Her one room is small, about 8 ft by 8 ft, by her description.  There is a table for homework and eating. She has no fridge or stove.  When I asked her if she had a fridge she replied "after my son's school, I will buy things  - don't worry, I am happy." She pays 5000 rupees a month to send Amid to Cisco networking school.  He has completed 2 years, one more to go.  She found out today that Nanu was first in his class regarding a 10th grade standardized test.  She was beaming with pride as she told us!  She is a true mother, everything for her sons.  Education is extremely important to Ahba. 

Ahba is an excellent caregiver. She is very caring and loving.  In the shower I told her "Ahba, you scrub me like I am dirty!"  We both laughed.

She really cares about me.  I know this for sure as when we went to give her money (weekly salary), she asked "For what?"  For working!  She is so wrapped up in me that she forgets that she is working.  She only wants me to get well.  I tried several times to send her home early on Friday as Nanu had a 102 degree fever.  She was worried about him but would not leave.

Ahba has worked at NuTech for 7 1/2 years, as needed.  If they don't call her, she does not work. She told me I am different from other patients that she's cared for.  I do not know how but she says I have a good heart.  She does too.  It takes one to know one, right?

Ahba has a strong faith from her upbringing with Mother Teresa. When she talks about God she says "My Jesus" (emphasis on "My"), eyes beaming, a smile on her face - hugging herself.  She travels 40 mins by bus with her sons to go to church on Sundays.  She absolutely loves being there.  It is not an obligation as it is for some.  During the day when I rest, Ahba reads a paperback entitled "Bible Promises For You."  A former patient bought it for her. I asked her once if she sleeps during the 2 hr bus ride home.  She says "No, I pray."  

Ahba has so little, but she has so much.

Day 24 - Friday Procedure, a rough day

I had a different procedure on Friday. It was the 3 day catheter one, but this time the catheter is higher up my spine.  The spine MRI showed 2 disc problems so I think this is one of those locations as Geeta had mentioned she would inject stem cells there; I will ask. I'm not sure the discomfort is worth it.

The procedure started with the anesthesia injection which caused some pain. After a 3-4 min wait, he began and I felt pressure.  When the doctor was putting in the catheter I felt discomfort in my left leg. I think it is near a nerve. He said "You know, I'm going in blind." Yes, I knew and did not want to be reminded!  "Please don't tell me how thick or how deep it is" I thought to myself.

After that, it was time for my PICC line.  I've had 2 before.  In Morristown Memorial Hospital (NJ) they strap my arm to a wooden or steel board.  Here, a sister held my arm in place - squeezing hard so the doctor could find my vein. 

In the US, there is a TV monitor overhead so the doctor can see when they are close to the heart. No such thing here.

In the US, both PICC lines were put in above my elbow on the inside of my arm.  Here, it is about an inch below my elbow. 

In the US, the end of the PICC, the part that sticks out is a small 1 inch unit that one can screw things on to.  

Here, that unit is a larger and more complicated one.  Picture below for my Lyme friends. This is honestly the only thing where I think US is better.  Or maybe it's just what I'm use to.  US - 1. India - 50. Go India!!

The PICC took about 20 mins tops, maybe less. The dr told me what was happening step by step; same as the catheter procedure.

Back in the room via gurney, I was lifted safely 'by sheet' to my bed. Anesthesia wore off and discomfort set in, majorly.

AC went on the fritz, so I was moved to a nearby room to rest while Robbin cleared the counter so they could douse the A/C with good old fashion water.  A big mess ensued followed by cleaning staff.  I came back to the room.

I skipped the part somewhere where I cried because I couldn't bend my left arm due to painful PICC bandaging.  And I cry when I can get my point across and I can't get my point across when I'm crying.  A vicious cycle to be sure.  Poor Robbin, poor Ahba, poor sisters. 

Robbin patiently fed me dinner.  Later the bandages were removed and replaced so arm bending was optimal.  Phew! 

I asked for something to help me sleep.  Melatonin was given.

ZZZzzzz....

Day 23 - More About PT

As you know I have two 30 min PT sessions (10:00 and 1:30). It is always a race to be on time, I'm slow. Yes, "The Deb" who did everything fast for her entire life, is now a slow talker, eater, walker, etc.  It took a major crippling to slow me down!  Sad, but true.

Varun stretches my legs, ankles, toes, etc in many different directions, while I am passive.  We usually chat about things; each curious about the other.  We talk about music, sports, work, family and more.  He will marry in October.  He is 29.

After stretches, he has me bend my ankles up and down while I am on my back. Then leg lifts, up & down 10 times. Then legs out to the sides for 10. Ok, most things are 10, some 12.  Then he holds one leg at a time, up at the foot & knee and I go back & forth. Then he places a grip under my knee and I go up & down. Then with both legs bent at the knee, I lift my bottom.  Then we switch to arms. I bend each wrist with some resistance on Varun's part. Then he grasps one hand and I twist back & forth.  My right hand is very weak, so he adds no resistance.  Then an assortment of arm bends and pulls both out & up. About 5 different combinations.

Then with both knees bent he presses them from side to side as I move my head in the opposite direction.  Now he helps me to sit up.  I move my head back and forward; then side to side sometimes holding a ball.  Then we hold hands as he guides my arms front and back.

Varun has increased my PT load a tiny bit this weak, adding more resistance and new exercises for stomach (because I asked) and back. Also some additional legs movements.

All the while, a young boy, Faizon, wails as his physio therapists try to help him. His mom is right there singing to him and holding him close.  It pains me to hear him, because he is so young.  He has cerebral palsy.  Geeta has a decent track record with CP so the family is hopeful. Faizon's grandma is there daily and sometimes her son, Faizon's dad.  The grandma and I chat daily as I wait for 15 minutes for OT to start.  She is very warm &friendly.  Ahba translates if my speech is unclear.

Afternoon PT is more active. Leg lifts with a machine and a 1 lb weight.  I grasp a pulley with 2 hands as I try to pull each arm up in turn.  Then over to bars on the wall where I balance on each leg as I lift the other one. Also each leg to the side for 10.  Knee bends too - all while holding on.  Then up some shallow steps with hand rails and back down. Finally, I walk around the room with my trusted walker and then sit and chat with grandma for 15 mins.

I recently switched the am and pm routine as I am tired in the afternoon. Varun's is accommodating.

More tomorrow.

Day 22 - short post

I didn't want to skip a post, but not too much new and I'm poop, no nap today.  Tough life, huh?

Robbin's migraine is much better but he is still groggy from the meds they gave him last night.  Did I mention they have yoga here? He goes on M, W & F for an hour.  So far, private lessons.

Today, when they put the blood pressure cuff on, it didn't hurt.  I maybe getting some muscle there, I hope.  They do my bp 3 times a day and I always felt pain.

So what does any mom do when they have nothing new to say - why talk about their kid, of course!  I really should say - man - as Ryan is 24. (Jav, remember lifting him on your arm over 20 years ago?)

Ryan flew out to San Francisco late last week to begin a summer internship at Google! He is sworn to secrecy, but we do know he's in Mountain View.  He is living with a friend from college in the mission section of SF.  He says his friend is very welcoming and his place is really nice!  Google has vans and that is how he gets to work.

Everyone here remains accomplished, helpful and caring.  The NuTech manager Jyoti stops by every single day to check on things with us.  I always love her clothing! Beautiful colors.

Ahba gave me 2 hand and arm massages today, OT doctor's orders.

Watching "The Incredibles" on TV - it's funny.

Joe, heard you are going to Branchburg, tell us about it. So so happy for you!  And John, congrats on TCRC, I saw it on LinkedIn!  IM-NCD still rocks!!!!!!!!!