A Cultured Life…

…stumbling through life with two beautiful daughters – often tripping, sometimes running!!

Day 174, d60 ***Updated***

Nothing has changed my last post. In a few hours Swati will have the Endoscopy performed. I cannot bring myself to say “I am sick of this”, “I am so tired”. Where will Swati go then? And what must she be going through? Last night was the worst – in a while☹ the cough gave no respite and I don’t know how much sleep she got.

This procedure will look for all of the below-

1- Candidiasis

2- Ulceritis

3- Esophagitis

4- Gastritis – erosive gastritis, not ulcers yet but if left untreated could become.

5- GVH – microscopic, wbc, diagnostic

Woke her up at 630 so could drink an Ensure (light breakfast before 7 am) and then gave her some Gatorade at 1030 (within the 11am deadline)

Will update in a few hours.

******Update 10/5******

Exhausted to update yesterday but here are some early notes – visual findings from the scope are good. No issues. Now we wait for the pathology reports of the samples taken, which will be at the end of the week. Swati and I are at the ATC for the regular Tuesday visit with Dr Shpall. Which means we will be here for a good part of the day. Last night continued in the same fashion- coughing and nausea. Need to find a solution, so she can eat!!

Leave a comment »

Day 123, T9

a relatively quiet weekend

I think the heightened stress has somewhat subsided. Swati had a good (?!) day yesterday. On and off had a fever of 98.3 and thereabouts. She was able to manage the day. The doctors are not worried about the fever because it is not spiking high. Definitely an infection. She is on broad spectrum antibiotics and her blood cultures show no infection. We pray that this continues.

Today, Swati and Aditi planned to play their Switch with friends. Not sure if that took place. We have had updates regarding her meals and the nurses.

This morning Srinivas and I took a walk – one that he does everyday but my first. Stopped for coffee, smoothie and avocado toast at a cafe called Fellini in Rice Village. It felt good to get out. These days half my head is at the hospital ALL the time. The other half is on whatever it is that I am doing. A little bit unnerving, like watching from afar.

What are we watching today?

I am hooked on “100 foot wave” on HBO. Some years ago I read an article on surfing the largest waves in Navaré, Portugal. This episodic show is about people who have surfed these waves. The documentary captures their triumphs and travails. Something about this show has me smitten. 🙂

Thanks for reading!

1 Comment »

Day 114, T 0

……and we are here, at the day, today

****Update 4:20**** Bag 2 is complete! The rest is a waiting game. 💙😍😇

****339 pm**** and the second bag has started!!!!

****Update 330 pm**** waiting for second cords!!

****Update 1:39 pm*****

And the first bag is done!!
Bright red cord blood is infused

****Update 1:12 pm*****

Swati is receiving the cords!!
We sang “Happy Birthday” and watched it flow into her line 🥰😇🧡

****Update 12:20 pm

Benadryl on

****Update 11:21pm****

12:45 the cords will arrive on the floor. The first bag is (?) 100 mls and should be done in 20 mins, max 30 including set up and flush.

Ordered lunch 10 mins ago- soup crackers cottage cheese. Hope she gets a little bit in prior

Swati’s cell counts at 0- Yaay!
Exactly where we need to be going into transplant. This also means she is tired. Wiped out tired 😓😣

I am asking her to visualize what her blood and marrow looks like – empty, hungry. So when the cords arrive she can visualize them as food for her marrow, nourishing her body with sustenance and giving them space to establish.

Interesting fact- Swati is getting two separate cords from two different donors. Experience says that one cord will establish itself over the other and what we will see is the synergies between the two cords which await with the engraftment 😇🧬

Evidence that divinity and science can co-exist. At least, I don’t need any more proof.

****Update 9:47am cst****

Shannon our nurse just updated that it could be noon. They are working on logistics and administrative paperwork. 😇😇

8:20 am

Swati and I went off to the ultrasound department at 7 this morning. Her line looks good. The veins look good. No collapsed valve. Or clots. Thank you god 😇

I will update this post.

3 Comments »

Day 106, T -8 #2

The ATG part of the treatment was uneventful – Thank you God!

From today, when we are in the room with Swati, we have to be gowned in full PPE. Swati is postitive for the Enterococcus, a bacteria found in the GI tract. For most people with regular immune systems, it does not cause any harm. Since Swati’s immune system is down, the bacteria are having a field day and not responsive to Vancomycin. Hence the term Vancomycin-resistant Enterococcus (VRE)

This is an added challenge – the caregiver has to wear the PPE gown at all times while in the room. While leaving the room, the gown will be disposed off in the trash inside the room. I will put on a fresh one when I enter the room. Same for any visitor.

Swati on the other hand, needs to wear the PE when she leaves the room for a walk.

Quite uneasy about this turn of events. Recalibrating the many moves….

Tomorrow we begin the Chemotherapy regimen, specially tailored for her after last weeks test dose. We start infusion and IV lines at 3am.

Leave a comment »

Spring forward!!

Once again I wearily toss the covers away from my face and peer at the digital green numbers. 3.30 AM stares back at me. the next instant, I sat up, my brain registering 4.40 AM and i have never been happier for Daylight Savings Time (DST)

One less hour spent willing my brain and body to sleep, while I resist the urge to walk over to the kitchen and take my prescription pain medicine. The prescription does say ‘As Needed’ to side-step any thought provoking yes/no decision clauses.

Out of nowhere, I began experiencing a shoulder pain and in four months went from a twinge to all out dysfunction.  Back to my favorite Ortho who said it could be Adhesive Capsulitis. An inflammation of the sac covering the ball and socket joint of the shoulder. The kicker – Spontaneously!

I needn’t have have hit my shoulder, yanked hard on something, twisted my shoulder – to get this. Then again, I could have done any of these and I just don’t remember.

As much as I hate to admit, the human body does show the ravages of time. Of course, ever since the MS diagnosis, my understanding of body and health is turned on its head. I remember reading somewhere that the body loses 30,000- 40000 skin cells ever minute. All other body parts are also going through this shedding process, at different speeds, even as I type!! I am wondering about other unseen parts on a similar trajectory.

Mentally peering telescopically inwards, my mind is distracted from the pain meds. After one week on the opioid-group of meds, my taste buds are shot, my insides are on a 24-hour rollercoaster, and the exit pathways have shut down.

I am grateful for the one-hour early dawn and the humdrum routine which awaits.

Today, I will do a Risk-Reward analysis of a 6-hour sleep with the aforementioned side effects (in addition to all the conditions in scary literature which accompanies the medication) OR a two hour sleep cycle with perhaps more time to write😊

 

 

Leave a comment »

A pack of Jim-Jam and I

The packet on my desk...

The packet on my desk…

It did not occur to me that a mere packet of jam cookies could evoke such strong emotions.

It was the first trip to the grocery store since returning after dropping my second (and last!) child at school. A routine shopping trip, fighting jetlag and trying hard to get back into the groove and trying even harder to NOT think of a home without the kids – living with you!!

It was odd to walk into the cereal aisle and not reach out for the largest box of chocos that I could lay my hands on. At supersonic speed my brain was reliving the innumerable time when I had combed this aisle for every variation of chocos possible – Stars and Planets, Choco Duets, Chocolate Chocos and so on. As a mom on their Facebook page said, “My shopping cart always had a Chocos!!” And I was proud of it!

This time, the shelves were stocked to the ceiling with boxes of Chocos and I did not reach out for them. I had half a box sitting in my shelf and no one to eat it! I briefly crossed paths with the thought that I did not have to buy this sugared cereal till the next summer visit by the student. I chalked that up to one more sign that I am an empty nester.

Pushing my cart filled with kitchen staples such as whole grains, I came across jams and spreads. This is another section I dearly love. I have spent many anxious minutes debating over the pros and cons of a 200gm Nutella (bonus – the glass jar can be used as a handy drinking vessel) and the 400 gm Nutella (in my opinion too big and too lacks nutritive value in large doses) The same decision paralysis would apply to the beloved Kissan Mixed fruit jam (a staple from my childhood as well!), the de riguer of the simple Peanut Butter Jelly sandwich.

These I walked past as well, that list of signs growing in my head.

The next aisle to evoke some serious thought was the shampoos and conditioners. We went from a home of three women, with varying hair lengths to one with a close cropped style. This meant that the existing supply of S and C would service innumerable pea sized drops. Feminine hygiene products did not feel much love either – One quick pick up and was off to the cash registers.

Several items were being quickly being added to my list of signs. Please keep this list in mind as you get to the end of article, if you do!!

The unifying thread across this grocery store trip was the size of my purchases. I picked up a packet of Maggi where earlier I would have picked up two, even three. All flours and other staples were cut by half. Never mind that my bill at the end of it all was still four figures; in my mind, I had, sadly, not picked up the staples on my shopping list.

Back home and putting things away, the full import of my shopping trips-to-be, nay my new life, hit me and hit me hard. Like the proverbial straw which broke the camel’s back, all it took was a packet of Jim-Jams to allow the tears to pour out. I went item by item over my list of things – meant to keep me over the edge and that is exactly what happened

This specific packet had lain in the corner of my pantry unit, a forgotten vestige to time that has only recently passed by me. This Jim-Jam, “A crisp biscuit sandwich with thick Vanilla cream, topped with a dollop of Jam, kissed with sugar crystals,” is a receptacle of my momhood woven into kitchen and food memories. I cannot look at another one of these without thinking about my two dearly beloveds, cozying up with Jim-Jams a glass of milk for a midnight snack.

With this episode, I have banished my jet lag. I am in uncharted territory. I am now on a cautious look-out for other innocuous items which MAY have the potential to open the floodgates.

Oh the life of an empty-nester~~

Leave a comment »

mommy (or daddy!!) thoughts…..

Today started out as a weirdly difficult/sad/moody day for no particular reason. Read this piece on parenting by Charles Blow in the NYT http://www.nytimes.com/2013/11/07/opinion/blow-the-passion-of-parenting.html?hp&rref=opinion and promptly burst into tears at the office!! Just what i needed – a soul cleaning good cry. One line which stuck long after is “….parenting was a lot like giving a hug: It’s all about love and pressure and there is no one way to do it.”

I am in second college application phase of my life and am not quite ready to look in the eye at what’s next.  Thank god for #NABLOPOMO – I have found my outlet!!!

Leave a comment »

The Boston Marathon and my child

I have this huge stone in the pit of my stomach right now. All day I have been alternating between a hole in my stomach and a stone to fill it.
A moment of great joy, immense pride is now forever wrapped up in fear and grief and misgiving.
Aditi would have never been at the Boston Marathon 2013 medical tent if it was not for me.
I am the one who took to running first, in a family of avid sports watchers.
I have forever painted srinivas and Aditi and swati with the running infectiousness that only an insanely happy runner can.
I have tried to protect her from the real and imagined bad thoughts.
I have tried to protect her from now and future mistakes
How do I protect her from wanting to do something because it would make her mom happy?

This the reason she was at that medical tent- because it was her second time volunteering, because mom would be so proud once again, because for now this would be closest mom would get to the Marathon course.

How do I protect her??

Leave a comment »

What do Clementi & Ravi mean to me?

The guilty verdict of Dharun Ravi in the University of Rutgers Webcam spying case hit me hard.

  • University
  • Freshman
  • Dorm
  • Room mate
  • Facebook
  • Twitter
  • connected 24/7

Aditi my 18-year old freshman is all of this. But she is a 1ooo miles away from home and there is no end to the things I worry about. Letting my first baby to go to the US for undergrad studies was the hardest thing I have ever done. September 2011 – All of us flew down to the US to drop Aditi off at University. Many $$$, much advice and many tears later, she was in her new home and we were ready to go home to India. Our sage advice (both necessary and unwanted) revolved around the importance of regular eating habits, regular bed times, partying, some bit on boys and the ground rules for Skyping at designated times of the week.

According to published reports, Dharun Ravi, 18 set up a video camera in his dorm room and briefly filmed his gay room mate, Tyler Clementi, also 20,  in a tryst with a 30 year old man he met on an internet site. A few days later, Dharun set up the webcam for a second recording and proceeded to tweet about the ‘viewing party’. The second viewing never happened because Clementi found and turned off the camera. A few days later Clementi jumped off the George Washington bridge after posting to his FB account. At that very momet, Dharun posted an apology on Clementi’s wall.

All this in the first three weeks of school!!

Of the many pieces i have read, this one from the The New Yorker struck a nerve – there does not seem to be much hate or malice on either side. Just teenage stuff with tragic consequences.

As a mom, I try to imagine every moment that that both the boys went through. Tyler – Shy, just come out, testing his independence; Dharun – the brash, tech savvy, eager to score points with his peers. I try to leave the legalese to the experts.  What comes out is the mean-ness that only teenagers are capable of; that feeling of invincibility and the feeling that the internet is their oyster. I truly believe that youngsters today do and do not recognize the power of this explosive online world. ‘Kony 2012’ and ‘Tyler – Ravi’ are two extremes in this spectrum.

I know Aditi is an avid Facebooker, connected closely to her younger sister and friends she has had for much of her 18 years. I have gently pointed out the pitfalls of too much public showings and impression I want to think that she is fairly sensible about social media and friendships in general. What I was not prepared for was the realization that sensibility is not going to help in the explosive online world of personal branding which is viral and absolutely boundary-less.

­­­­I know that I have raised independent children. But nothing prepared me for these new fears that I need to confront. I am emailing Aditi articles, comments – anything that will give her bits and pieces of the jigsaw puzzle. I hope she will draw the correct thoughts from two lives irrevocably destroyed. I want her to recognize the dangers and the pitfalls of the world we live in today along with the ease and fun. But most of all, I hope she will know that her parents are there for her, always.

The hardest part of parenting is waiting – while work in progress.

Leave a comment »

What Rahul Dravid showed me about Swati…

On March 9, 2012, Rahul Dravid threw the entire cricketing world and a nation into a frenzy by announcing his retirement “from International cricket and domestic as well.”

There have been reams written about this man – his humility, his graciousness, his erudition, his technique. I am not qualified to write about his cricketing record, but Rahul Dravid has given me an insightful peep into my 15-year old daughter Swati.

Since moving back to India in 2004, my daughters Aditi and Swati have taken to sport, especially Cricket and Tennis in a big way. Every match, every series telecast on TV was devoured by the girls. It was all I could do to lay down the law that said we would only watch matches when India played; the rest would have to be followed on the news and the internet. It was in 2009 that I learnt of an old classmate who was now the editor of Cricinfo. During one of our conversations, I learnt that he was a good friend of Rahul Dravid and that Dravid was visiting his Bangalore office. I arranged for Swati to visit the Cricinfo offices and meet him. Speechless and spellbound, Swati had her picture taken with both Sambit and Rahul and said not more than two sentences during the time she was there.

At that time, I treated this incident as famous person sighting and figured it would just pass on. As time wore on I was pleasantly surprised when Swati began exhibiting an interest in writing. In the days since that meeting, I got to know that Swati was already a Sambit loyalist. Sambit and Rahul together was a whole different story.

In her reactions and affections for Rahul Dravid, I recognize her ability to see behind the glamour and the glitz. I see her recognize the flinty determination on his face and the stoicism that Rahul has displayed on the pitch in YouTube videos of his grand matches. I have read Rahul Dravid crafted his game with a phenomenal individual effort.  You could see this determination in his face; it was not just an effortless waving of the bat. I see this determination in the way Swati has addressed her Achilles Heel in Math and can’t help but wonder if somewhere, somehow, this is where her determination comes from.  As she soaks in the hundreds of articles she reads about Rahul Dravid, she recognizes the grandeur and the simplicity of a man who epitomizes a gentleman and contrasts him with people who now bear the mantle in Indian cricket.

As parents we are painfully aware that children are a Work-in –Progress. We wonder who they will be when they grow up and hope that they embody the best in you as well as the very best they can ever be. Swati is only 15 but her awareness of life through Cricket has been a remarkable journey for me and I feel as though I am watching from the sidelines. She has celebrated the losses of the Indian team and cried through their lows. I know that the recent England and Australian tours were somewhat of a watershed and portend huge changes for Indian cricket. I listen to her musings and sense that she has a far greater understanding of the game than I do.

Something tells me that we have raised a girl who bats a straight bat. My hope and prayer for her is that the qualities she has been reading about and perhaps writing in her blog are the ones that she will keep uppermost as she goes through life. Not just for herself but also for those that she chooses to keep in her orbit.

Leave a comment »