April 30th

Sunday at the hospital: A quiet day is a happy day

Bina Mousi continues to improve miraculously.  Anupam and Kukki went to the hospital early in the morning to relieve Ritu from the night duty. Shalini and I alongside Binu and Shekhar got there around 10am
Bina complained that she could not sleep at night at all due to the noises and people coming to check up this or that. We all had to remind ourselves and her that being aware of the surroundings ( even it is a complaint) is a sign of being human and being alert.  She continues to look better by the minute. Most of the apparatus is gone ( except for the IV stuff), she is communicating and for the first time in last week, she checked up on her What's App groups and commented on things.
The doctor came at 11 pm, last night(  In India, even the specialists check up on their patients at all times) She is happy with the progress and wants to continue this line of Chemo for a while. She ordered some more tests for the biopsy ( something called the FISH test) to determine the plan for treatment.
 Remaining issue is the pains in the right leg and the hip, the back and all over the body. The pain is unbearable sometimes and we are trying to figure out if it is from Chemo or from the fact that bones are full of cancer. If you have suggestions for pain relief please send me an email.
I stayed the afternoon with Bina. We talked and reassured each other that she will spend a long time in USA as soon as she gets better. I made her sleep and in doing that I slept for two hours :) Both of us needed that.
Today is Sunday and that means lots of visitors. The hospital looked more like a party place than a place for the sick. Visitors were dressed up, noisy and mostly happy looking people. A big change for the looks of worried, sad immediate relatives of the weekdays.  I am not sure if I like this change but it is what it is.  This is more culturally required and acceptable here to visit a friend or a relative in the hospital...
A ate the gourmet hospital lunch. The food here is good and considering the fact that it was only $2.00 it was really good. I am hoping it is clean enough not to cause issues tonight .
Traffic was horrible on the way back from  the hospitals ( around 7pm) . Everyone was out for the weekend.
Anupam ,Shalini and I went for a walk on the beach ( around 8pm). It was crowded with families picnicking in the dark, people playing in the warm water, vendors selling all sorts of Chat as well as little toys for the kids. Sweet smell of roasted corn (Bhutta) was mixed with ocean smell and gentle warm breeze was refreshing after spending all day at the hospital. The Juhu beach is lined with five star hotels and as we walked we heard the western and Bollywood dance music blaring out from the hotels where rich were partying and dancing and poor were lined up on the beach listening...
Back home, dinner was waiting. Once again Neha and Renu and served home cooked Indian food as well as pasta and garlic toast.
Today was a nice quiet day which ended with a wonderful meal and a great news that Bina's chest x-ray looks clear , meaning no more fluid filling the lungs. I do not know what it means long term, but for today I take it as a blessing and sleep with gratitude towards all of you in India, in USA and in UK....good night

Using the cell phone after a long time....

 Visitors at the hospital....

 Shalini and Rhea in deep conversation at the visitor lobby..

 Rhea and Bina Dadi...

 Food Vendors at Juhu Beach

 Vendor roasting Bhutta...

Gratitude beyond words : Miracle continues

April 29th Mumbai Kukki/Renu's flat

Anupam and Shalini arrived at 3 am.
After a flesh wonderful breakfast, we piled up in the minivan and made ourselves comfortable outside ICU..all nine of us.
Bina was sleeping and the guard was grumbling but after a while he took pity of us and he let Anupam in. Bina Mousi got very alert after seeing him. ( In Urdu there is a Gazal basically saying ," She looks at the brightness on my face that is brought on by her visit and thinks that I am feeling better ( from my sickness) but the brightness is the happiness of seeing her). The translation does not sound as nice but I hope you get the message. She saw the pictures Anupam brought and talked about Theresa and Atticus.
Shalini went in. Bina talked about her marriage, about Matt and about how sorry she is that she missed the wedding. She told Shalini that she wants to come and visit all her friends and stay in her home.
We celebrated by binging on chocolates that Anupam brought.

Miracle continues, the CO2 level is normal, Chemo is working and all other symptoms are getting better. Bina called me in to continue her complains about the ICU and how she just wanted to go to her room. After much negotiations with the doctor, she is in this amazing room on 8th floor. The room has three large couches ( in addition to  patient's bed) , view of the water and gardens, private bathroom and is quiet. Oh and has a nice TV for watching serials...

For us this is a relief. Everyone knows it is not over yet but is thankful and relaxed. Bina is smiling, even laughing and talking. Kids are amazing. I raced cars with three year old Ansh, who knows all the States of India ( and I do not) , saw amazing painting done by Anaya, discussed Math and Physics with Rhea ( 11th grader), walked on the beach with Anupam and Shalini and had a wonderful home cooked meal with the family...life seems almost "normal". Bina is still in the hospital and still has cancer but it feels like this episode has brought us all closer. We will face what ever life has to bring,: with compassion, gratitude and the knowledge that you are there to hold us and help us get through it.  Good night....

 Shalini and Ansh ( who knows all about cars and States of India)

 View from the room

 In the room, on the way home, room with the view....

What is a miracle? Mirecle is something that does not happen routinely

 April 28:

Lilavati Hospital, Mumbai:

I landed the Mumbai airport hoping for the best ( i.e. she is still alive) but prepared for the worst.   Whats App informed me that she was still there in ICU. The news of anyone being in ICU never felt so good.
I came to India after three years and  Mumbai airport has transformed into a modern facility. My grey hair along with calm OLD look got me ahead of long lines of Hajis so fast that Amit had to gobble up his breakfast at Starbucks and find me at the arrival terminal. He told me that Bina Mousi was in ICU and stable. Roads in Mumbai never looked so clean, quiet and beautiful.
At home at 5 am, the tea and biscuits were ready, Renu and Kukki were waiting and my brother Kukki was waiting. We took the Rickshaw ( open air taxi) to get to the hospital and in in ICU using smuggled passes and some charm of old gray hair and " just came from USA Mantra".
Bina greeted me with a smile and went on to complain about everyone. How she hated where she was, how "they" got her in all this trouble, " how it was all noisy and dark" and 'how no one was telling her anything". A very long list of complains never sounded so sweet. I never thought I will be delighted and tear up with joy listening to all the complains.

When I came out to tell the family about the "complains" everyone seems relieved and happy. After what they went through, this was a relief.  Bina was in coma due to CO2 poising ( lungs not functioning) when I started my 22 hour journey home. They had to make hard and quick decisions about , " no ventilator" and a dose of "Chemo" where the doctor informed them that the patient may die due to her physical condition.  Once the chemo was given, the heart decided to start giving up on her. She got through artificial revival and here she was 12 hours later complaining about the conditions in ICU.

When I told the doctor about the complains, she smiled and said , " this is a good sign" and added who likes ICU?  She is right.  SO, first day was very gratifying. Your good wishes , her karma, families good luck, brave decisions. doctor's skills and risk taking or above all family's trust on each other, unity and being there...of just a miracle, what ever it was we were extremely grateful to take it.

So, there were nine of us, sitting out side the ICU hoping that the guard let us in , one by one just for few minutes. I will try to point out the differences in the Indian and American systems in later post but at this point, just want to say how tired and thankful I am about the family and friends in India and in USA and how lucky we are that she is continuously improving. She was not not out of the woods , the CO2 level is still high but she is not in COMA and is talking off and on.

 Dinner after all day at the hospital...

 Outside ICU ...waiting...

 Roof garden outside ICU

Waiting outside ICU..relieved and cautiously happy

Trip to India to see Bina Mousi

 Flying to India within four hours of notice to see Bina Mousi

I am somewhere between Mumbai and Istanbul on Turkish Airline’

Star Trek is on full volume ( First contact, opens with Captain Picard simulated into Borg). I find it is healthier to watch comfort movie than eat comfort food, for me, that will be sweets and carbs.

In the groundless, ever changing and unpredictable life, only thing that is constant is the change and unpredictability. But, in last five days, I have also learned that the only human response to that is unconditional love and quiet reassuring presence in the loved ones lives. Knowing that no matter what life brings we are hugged and we are supported is the key to peaceful life.

Last Saturday, we had a booth for our non profit SUKHAM ( PALLIUM) where we are attempting to help increase awareness for healthy aging and dying, I received the unexpected call from my brother Kukki ( NO doubt sobbing on the other end) he told me that Bina (our sister) has Cancer that is spread to, spine, bones, lungs and breast. There was no warning. None. Just a back pain and a MRI. My shock  was instantly reduced by the love and hug by Jerina and Mukund.

It has been a roller coaster journey in last five days. Technology: Medical and internet has helped with the consultations, connections, guidance and plan but what has been most helpful for me and family involved is the non stop love and support .  Theresa, Anupam, Shalini, Matt, Smita, Pam, Fern, Xiaoyun, Anke, Jyoti, Renu, Emre, doctors at Stanford, Arun from UK and so many of you who have been a quiet supportive presence and will carry us through this

I am not sure if and when and in what condition I will see my sister. In five days, she has gone from a healthy loving person to a comatose patient in an ICU in Mumbai. In my moments of grief and agony, I am constantly reminding myself of  the love I got from family and friends who dropped everything to make sure I get on the earliest flight. Bomi booked, rebooked and rerebooked the tickets ten times in two days ( every time Bina’s condition changed) . Theresa got me ready at a moments notice and encouraged Anupam (leaving an eight week old infant) to go and be with Bina and family. Shalini dropping everything to be with me and family in India. Emre, Xiaoyun and Theresa’s mom to step in fill the gaps, Sushma and Gayatri and all of the Sukham group ready to help with whatever is needed.

I do not remember any moment of my life when Bina was not there. She has been a stable, quiet and reassuring presence for last 70 years. Growing up, we ran around, we played on the streets, we climbed the trees, ran in wild in parks and wilderness. She was always there, she was with us, perhaps the voice of wisdom and the quiet guidance so we do not get into serious trouble.

In college and in school, we always looked up to her. We played with her friends, we followed them around and without realizing we all grew up. She became the best eye surgeon there was and yet she was always the quiet beautiful sister and a daughter first. She was there for me when I got married against my parents wishes, she was the last person I saw before I boarded the plane to come to this unknown land. I always knew she would be there for me. 

We raised our families. She raised two smart, loving sons. There was no Internet then and we did not talk much or visited much.  But, when I was pregnant and I needed help, she left her little boys with my mom to help me. She came and took over my home, our hearts and my kids for six months. She was Smita’s ( three year old) best buddy and Anupam was her little “Pilloo” She made special food for Smita, special pillows for Anupam and took over all the cooking. It is then, she became a mother from being a sister…a mother who is also a friend and a soul mate, I can share anything with her and she understands.

We live on two opposite parts of the world, busy in our challenges, fulfilling our own destinies but she is  there for me  the instant I need something. As soon as she heard I had cancer she dropped everything and came to take care of me. Once again she took over hearts and the cancer became a big long party for six months. I never knew caner could be so beautiful…I wish I can do the same for her, it brings tears to my eyes that it may be too late to make her smile and make cancer fun… and just show her how much she means to me and my kids.

With technology, we have been more in touch. Any time there is medical problem, out first instinct is, “ ask Bina Moiusi”.  Her wisdom goes  beyond the medicine and just her words, “ Do not worry just take some B12” or use eye drops or I will come do not worry” are reassuring to make the anxiety of potential illness go away

. I hope she sees us ( I will be there in few hours and Anupam and Shalini in a day)  and she realizes how much she is loved and how much she has affected our lives and  so many people’s lives. Shalini pointed out, “ Bina Mousi has more friends in USA than any of us do and she has not even lived here for more than six months at a time.

Her love is quiet, there is no ego, no fan fare  …just a loving quiet presences, a very calm voice and excellent food.

This is the human condition at its best. We crave security, stability and permanence in the world where nothing is permanent, nothing is for sure and secure. Only thing that brings the sense of peace and joy is the knowledge that we will be there for each other, we will hold the space for each other and we will fill in the blanks quietly without any fanfare.

What I have learned from  this experience (not over yet)  is that the curse of being human is to accept the groundlessness, the unpredictability and the constant change.  Fear of pain, death and sickness is always there but we can use it to convert into love, trust and a constant stable force for each other…. that’s the only way to be human and be peaceful .

Time to prepare for landing. Love and gratitude beyond words can express.