Kids make it a home.

We had a quiet few days and then the kids came home. Suddenly there was a reason to cook, put on all the lights and gather together in the family room. The sounds, the smells, the sight of boys horsing around and Jyoti bossing over them all spelled HOME. After dinner we all settled down on the sofas for a while. Jyoti immediately fell asleep, then Ravi decided to do his laundry and sit in the hot tub inbetween loads and Suraj went in the big room complaining he did not like the show we were watching. So Jeff, Sachi and I sat for a long time chatting intermittently, but mostly in comfortable silence watching some basketball game. Earlier, Ravi had offered to help with Sachi's tube feed and after initial instruction managed it expertly. Now they are all gone except Suraj who is sleeping on the sofa with the blanket over his head.

Sachi is taking the tube feeds four times now instead of having to divide the cans six times. Our goal is three times a day so it matches regular eating times. Today he was able to stay awake for nine hours at a stretch. This is a first. I am not sure if this is improvement or excitement over the kids coming home. On the outside people probably think Sachi is the disciplinarian; He is actually a softy when it comes to the kids. In their own ways they all know how to wrap him around their fingers. These days since he is at home he is thinking a lot about their needs. He has started talking about 'when I get my strength back' so I think in his mind he has already gotten better.

Due to rain I have not been able to do any gardening but the plants are growing anyway. The peonies have many buds and the roses are putting out leaves on tender branches. The trees are light green and look pretty against deep green grass. Before the verdant growth of summer, this spring scene looks delicate and wistful. Sachi and I enjoy this from the window of our family room. Come summer we hope to take short (graduating to long) walks in the neighborhood. Right now our exercise is watch movies on TV. Yesterday we saw the indian movie, Jab We Met. It was quite good.

We specially enjoyed the comments this last time. They contained a lot of thought provoking ideas. We would like to come back to them and discuss them in the near future. Right now, however, it is time for Sachi's medicines and tube feed. So please keep the one way discourse going untill we can join you.

always thankful. . . . . Ambi.

Happiness is an attitude

In this result oriented world it is easy to get caught in the current and start looking for definable markers of success.

I was returning from yet another shopping spree today to bring home necessary sundries and found a flare of white&pink flowers where I expected none. On close inspection it turned out to be the new peach tree (remember the twig!) that had burst into bloom. I dragged reluctant Suraj, who could not be convinced that this was an occasion of immense proportions, and clicked a picture for all of you.

Coming inside I found another sight equalling the blooms outside. Sachi was sitting at the dinette table, sorting out part of the mail that has collected over the past two months while we were at the Mayo clinic. It cheered me immensely to see him sitting so straight, going through his papers, like he has always done . He has started paying attention to the world around him in between his tube feeds and long naps. He likes to slice an apple and offer it as a snack to Suraj when Suraj comes home from work. We usually take a short walk daily outside the house in our yard. It is not long enough to start a heart to heart conversation but is potent enough to energise both of us with the promise of future.

Having seen life at slower pace we are reluctant to speed it up; yet markers that take us closer to it are seductive and very satisfying. We are grateful to have the luxury of this tension between our two opposing desires. It almost slipped out of our hands.

We will be going back to Mayo clinic for Sachi's first check-up on May ninteenth. It is strange but I am looking forward to it. We saw Minnesota in peak winter, now we will get to see its beauty in summer colors.

It is always a pleasure to open the blog and read your messages.

Each one unique; worth many reads.

In your debt. . . .Ambi.

The Lion Outside His Den

Nature is slowly waking up here. The trees are laden with leaf buds, flowers have started their show and the sun lingers a little bit longer everyday. Normally at this time Sachi would be inside the walls of the hospital practising the art and science of modern medicine and would miss out the magic of our garden; Leaving the house before sunrise and hardly ever coming home before twilight. This year, however, having imbibed the benefits of cyber medicine we are trying our hand at another kind of healing now.

Sunday afternoon we strolled out in our backyard. Sachi checked out the the fruit trees, the daffodils, forsythia in full bloom (top left) and then sat basking in the late evening sun by the side of our 'not-yet-open' pool. Within a month the pool will be full of Suraj, Ravi and their friends. It is quite a scene complete with lemonade, watermelon and skimpily dressed kids. Sachi and I have come a long way in our journey from India to America. The first summer in USA I used to keep all the curtains of our condominium closed to save Jyoti from the corrupting influence of women and girls in swimming attire on their way to the club pool. Now the boys bring those girls home to our pool.

The middle picture above is Paul helping me plant the roses. The right one is the newly planted apple tree (twigs according to Suraj). It should bloom and bear a few fruits this year. When we came in from our meandering Sachi sat on the sofa, surprised at the exhaustion. A long nap followed. Later we watched 'The Pretty Woman' on TV. Last time we saw it, Ravi was not yet a year old and Suraj was just learning about race cars. We miss finding those matchbox cars all over the house in the most unlikliest of places. I do not know how we would have weathered this storm without our kids to ground us. On the flip side of this, we are acutely cognisant of the secure and happy childhood that gave us confidence in our adult lives, a quality we cashed in big time during this crisis. Thankyou Baba, Bou, Biji and Papa Ji.

We are really enjoying the free time afforded us to smell the roses.

Happy Spring. . . . . . Ambi

Swimming Is a Way Of Keeping From Drowning

When times were (and are) hard I remembered these lines of Guru Gobind Singh Ji

Oh Shiva! grant me this wish

From good deeds I may never scare
Limb by limb may be torn apart
Abandon battlefield I may never dare

This race however is Sachi's and Sachi's alone. We can at best only guess the road he is travelling. When race horses are training they are made to run with another horse to provide a challenge. I am trying to be that horse instead of letting the cancer take that place. You all are too. Looking at Sachi I think we are succeeding.

Sweet Babi, thank you for asking though.

This picture is of the daffodils growing behind an evergreen bush by the side of our house. Every year I forget that they grow there. When I do see them I am always shocked that I have overlooked them. Such bright color, such perseverance despite neglect, and such effusive joy. Seema, your comment reminded me to go out and look for them. This year they are for you.

The Daffodils

by W. Wordsworth

I wandered lonely as a cloud

That floats on high over vales and hills,

When all at once I saw a crowd,

A host of golden Daffodils;

Beside the lake, beneath the trees,

Fluttering and dancing in the breeze.

. . . . . . .
Continuous as the stars that shine

And twinkle on the milky way,

They stretched in never ending line

Along the margin of the bay.

Ten thousand saw I at a glance,

Tossing their heads in sprightly dance.

. . . . . . .

The waves beside them danced; but they

Outdid the sparkling waves in glee.

A poet could not but be gay,

In such a jocund company.

I gazed - and gazed- but little thought

What wealth the show to me had brought.

. . . . . . .
For oft, when on my couch I lie

In vacant or in pensive mood,

They flash upon that inward eye

Which is the bliss of solitude;

And then my heart with pleasure fills

And dances with the daffodils.

(Thankyou Mr. Mehta, my ninth grade English teacher)

. . . . . .

I have never seen a sea of Daffodils like Wordsworth; The field of yellow mustard flowers that grows in my village matches this description though. Baba Ji (my dad's elder brother) and I stood in that field once and recited this poem. He lives with those flowers now.

Sachi is sleeping on the family room sofa. It is noon right now. We spent the morning watching 'The Painted Veil' for the second time. I wonder what is the meaning of the title (why painted)? If you have not seen this movie add it to your list of 'must see'. Sachi has gained one pound. Slow but steady we are getting there. Ravi is at his track meet in Iowa (neighboring state), Suraj is with Jeff's family watching the Husker's spring game and Jyoti is working. Sachi and I plan on a quiet cozy day.

Our love and regard to all of you.

Ambi

"The music in my heart I bore

Long after it was heard no more"

Wordsworth in Solitary Reaper

These flowers and balloons will wither and perish but not the warm wishes and blessings that came with them. Thankyou all. Yesterday was a wonderful day in Lincoln - sunny, clear blue and balmy warm. The kind of day that makes it easy to believe everything will be OK. When kids were little they would run out with their arms outstretched and face lifted to receive the sun and the breeze. I have dozens of pictures, taken over the years, of the three of them picking tulips and lilacs; Suraj and Ravi chasing soap bubbles that Jyoti playfully sent their way. The children are grown now but the feeling is still infectious. Suraj (who happened to be home) and I drove to the Earl May nursery and brought home fruit trees and a few flowers to plant. We called Paul and Andre', Russian muscle men who help us with gardening, and planted two cherry trees, two apple trees and a peach tree. I kept popping inside the house to check up on Sachi and keep him abreast of the activity outside. He initially took a long nap but then I saw him peeking out from behind the windows. Andre', with closed eyes, put a Russian spell on the trees when we first set them in the hole. When asked what were the words of the spell he burst out laughing and said, "Grow tree grow!". By evening our exuberance drew Sachi out. With hands behind his back he chatted with Andre' about the garden. Due to the weight loss his high cheek bones and bony shoulders make him look a lot like Bou (Sachi's mother). The Bhuyan trait is hard to suppress.

This picture was taken last month in one of the Mayo clinic hallways. Sachi is checking out Andy Warhol's (original) print making skills. This corridor led from the radiation center to the food-court. We loved walking through it. Sachi is improving at the proverbial turtle's pace but it is slowly adding up. In sleep his face looks relaxed instead of tense with pain. Awake he is slowly taking over parts of the tube feed functions. Yesterday as I was leaving for grocery shopping he walked out to warn me of some gardening tools that he thought might be lying behind my car. Then as I was backing out of the garage he waved me out with a smile. With a smile! Did you hear that. With a smile. While driving to Hy Vee I let out a sigh of relief that I did not know I was holding all these days. I always knew he would get better. Now I know for sure.

This I wanted to share with you. Thank you. . . . . . Ambi.

Homage to New Technology

Sachi loves to check the blog. Your messages get read within a few hours of your sending them. This new age ingenious invention that our grandparents would have found unbeleivable and our kids find indispensable has proved to many of us (the sandwich generation) a marvel. This blog has shrunk our world to a cozy size and hurled us into a new dimension that we can cross instantly with a few finger taps. With this tool in hand world peace suddenly seems possible (I wonder if telephone once raised these same hopes?)

You can see I have too much time on my hands. Jyoti & Jeff left today and Suraj & Ravi are at college. Baisakhi was a family affair made very special by all the food, flowers, prasad and good wishes sent our way. Sachi was a quiet participant but the central focus. All the good will must have helped because today for the first time he skipped one dose of pain medication and another time chose extra strength Tylenol instead of Hydrocodone. He still spends most of the time sleeping. While here Jyoti did the same using the excuse: "I'm keeping Baba company". She was in her mayka (parents home as opposed to in-laws home) after all.

Sachi now sleeps a little bit more comfortably than before and wakes up less often. His tube feeds are going fine and he is tolerating the formula OK. Many times I am busy with the tube feeds and cannot pick up the phone; other times I switch it off so Sachi can sleep undisturbed. We are sorry about this and hope this will not last too long. Many of you want to know when you can come and visit us. We are so looking forward to seeing all of you and hope in 2-3 weeks Sachi's schedule will be more predictable and he will be upto these visits. Untill then this blog is our social lifeline. Some of our family from India and USA plan to come and see us this summer. This thought keeps us looking into the future. We can see the light at the end of the tunnel.

Thankyou for staying with us all this way. . . . . Ambi.

Thinking Spring

We are slowly settling down to a routine. After the relatively fast pace of treatment days we have now entered the waiting phase. The house is quiet, the kids are busy with their schedules and Sachi and I spend our time together, slowly picking up our life where we left off. Most of the day revolves around Sachi's medicines and tube feeds (six times a day). He walks around with a blanket, not being able to shrug off the cold. He has lost a lot of weight (35 lbs.) and has not yet started the trend up. The doctor says it will be two more weeks and then the recovery will speed up. For now Sachi walks (paces) inside the house as exercise. I cook a little bit and am trying to go through the piles of mail collected in the past two months. But mostly we sleep and watch TV.

Minnesota (where Mayo clinic is) has been pounded by snow storms in the past week and has had white out conditions as far as visibility is concerned. Nebraska had some beautiful days but is now wet and cold again. The kids had taken out their shorts but are back in their sweatshirts. I have planted a few pots with Pansies and they are doing fine in the cold. It feels good to look out and see these happy flowers waving back at you. The grass in the yard took advantage of the few warm days and has turned green but rest of the world is still dormant, like us. We are all waiting for the spring. The calander declared it spring on March 21st. but nature has its own plan.

Tomorrow Jyoti and Jeff will come over for 2-3 days and we will celebrate Baisakhi (April 13) together. Baisakhi is New Year on the Hindu calender and also celebrated by sikhs as birth of Sikhism. It is therefore doubly important in our home. We will take out our orange or yellow colored clothes, read passages from our respective holy books and say thanks for wonderful harvest (in Punjab it is wheat harvest time). Then we will have dinner together. My parents will not celebrate this year in memory of my brother. They are in mourning and will skip all celebrations for a year. My heart is at home with them during this time.

Thankyou to all of you who read this blog and keep it relevant. It is our connection to the unasked support we do not know how to ask for. At times it has been a life saver; a warm blanket always. With lots of love and regards . . . . . . . Ambi.

'Happy Baisakhi to all'

HE IS HOME

Homecoming has been somewhat like a chapter out of Rabindranath Tagore's novels. I had visualised jubilant, triumphant, celebratory entry back into our familiar way of life. Pneumonia was not in the plot; neither was Saint Elizabeth. Sachi, however, gracefully accepted them and made the best of the script. Today at 4:30 PM he was discharged from the hospital and we drove home. He slept through the whole way. On arriving he walked through the kitchen and the family room for a few minutes and then changed into lungi and shirt. I waited on the sofa for a little CNN news but he headed for the bed. He has been sleeping since then. Two family friends came from Omaha to wish him well and brought some food. He missed them but I will relay the message when he wakes up.

Sachi has been rather groggy the whole day today. First we thought it must be a medicine he took in the morning but now I think it is just the weakness and the tiredness. I have to wake him up soon for the tube feed. He is happy to be in his own bed. The picture above was taken in the hotel in the waning light of the evening sun. I exaggerated the effect through photoshop. It reminds me of Vivekanand. I hope you like it as much as I like it.

Till next time . . . . . Ambi

A Long Journey

On Sat. we moved back to Lincoln. Sachi decided that he was done with Mayo Clinic and he wanted to be back where he belonged. He was still in the hospital, attached to IV machine, running temperature but he wanted to come to Lincoln. So we arranged for a plane to come pick him up. Anup and Kali (Sachi's partner) made the arrangements, flew in the plane from Lincoln to Rochester, picked him up from there and brought him to lincoln. When you have friends like these who needs angels.

Sachi went straight to Saint Elizabeth hospital in Lincoln. Anup is his primary physician there. The day of transfer was very tiring for Sachi. But today he looked good. He is tolerating the tube feeds very well. The IV fluids are keeping him hydrated. He is also getting mega doses of 2-3 antibiotics. These and the pain meds. are keeping him comfortable enough to receive visitors. He still has fever (not as high as before) and his blood work shows low white cell count so we all have to be very careful not to introduce him to any infection. Tomorrow he is scheduled for a bronchoscopy. They want to make sure that his Pneumonia is not due to any obstruction in the lungs.

The morning of Saturday Jeff, Suraj and Ravi showed up at the hotel to take us home. They were a God send because loading the cars with the knicknacks of our life in the hotel was a bigger job than I realised. While Jeff and Ravi packed and did the loading I took Sachi and Suraj to the airport where Anup and Kali were waiting for him. They made it to Lincoln in about one and half hour. Ravi and I took turns driving my SUV and Jeff drove his Pathfinder. We reached home six and a half hours later. I am still in the process of unpacking. Jyoti and Jeff are here and are staying over. It is wonderful to be back home but we will celebrate our homecoming the day Sachi comes home. In the meantime Sachi is happy to be in his familiar surroundings. He seems to know everyone in the hospital. It is so nice to see him in his element.

The picture at the top was taken in our hotel room on April first, the day before Sachi got so sick. We have a few more photos to share with you. I will miss the beautiful surroundings of the Mayo clinic but hopefully we took enough pictures to refresh our mind. Soon our own garden outside will burst into color and will rival the art work in Mayo clinic. We can hardly wait for spring. It has been a long winter in more ways than one this year. Maybe we will get to see many of you this summer. Just thinking of that makes it a happy day.

With many thanks . . . . . . Ambi.

A Quick Update

Sachi is still in the hospital. He has his Percutaneous Endoscopic Gastrostomy (PEG) tube in and he is doing OK. Using it is simple and intuitive (in other words I have learnt to give him the feeds with that). He still has the fever though. So it will be tomorrow morning, after the doctor's rounds, that we will know for sure whether we are going to Lincoln or not. Right now he is in the hospital lounge reading all the blogs he has missed these past days.

The ringing of the Bell went very well. I gave him a brown teddy bear as a symbol of your collective love for him. I have a photo to share with you but I need to be at home to be able to transfer it from the camera to the Blog. Hopefully it will not be too long now. I want to pack and be ready for the trip tomorrow in case the doctors do discharge him. Anup, our dear friend in Lincoln and a very good pulmanologist, will meet us at home and decide what care Sachi should get from then on. Good night and Good morning till next time.

Ambi

The Bell of Hope

Sachi gets to ring this bell tomorrow after his last radiation. This is a Mayo tradition. For six weeks we have sat and cheered others ring it, now it is Sachi's turn to take the applause. The journey from diagnosis to this Bell was uphill and fraught with dangers. It indeed is a moment to stop and savour life's tenaciousness and man's victory over 'nature gone wrong'. The war is not won yet but the battle is over. Now we just have to help Sachi recover from the ravages of what indeed is a miracle treatment.

Last night was the night of all nights. We came back from the clinic around five. Sachi looked quite sick and restless. He would niether lie down nor do anything meaningful. He made some comments that alarmed me. I decided he is too tired so I steared him towards a nap. When he fell asleep the weight of the whole day suddenly descended on me. He had spent the day in a fog and keeping him oriented and making to all the appointments had sapped my energy. Looking at him sleeping I took a sigh of relief amidst feeling of pending doom. I knew something was not right but could not pin point it. Then at ten thirty I decided to wake him up. When I touched him he was burning hot. Knowing that his white blood count was low I realised this spelled danger in capital letters. Taking him to the emergency dept. used up all of my patience and conniving, for he did not want to go. He kept on mumbling something about a car jack. To my knowledge Sachi has never used a car jack (a gadget to elevate car so one can work on it) nor I believe he would be able to recognise it among other tools, but yesterday he was the authority on it. I finally convinced him to accompany me to Macdonald's for a diet coke. When I drove up to the Emergency dept. he quitely got out of the car and sat in one of the wheelchairs. From then on the effecient machinery that is Mayo took over and I knew he was safe. They did many tests that all came back negative except chest X-Ray that showed he had right side, middle lobe pneumonia.

He was stabilised in the ER dept. and then transferred to oncology ward. He was given IV fluids, antibiotics, tylenol and pain medication. I left him about 4:30 AM- sleeping deeply. In the morning when I went back I found him suavely socialising with the nurses. He had taken control of his life again and I was glad to relinquish the lagaam. He is on the mend and looking good. The doctors in their wisdom have decided he should get the feeding tube afterall. They think that right now the effort of swallowing is too much for him and is causing aspiration leading to pneumonia.

Tomorrow, after his last radiation, Sachi will undergo a small surgery to get the peg tube. This portal will be used to provide nutrition and will stay in place for six weeks. By then Sachi should be able to eat and drink without any problem. We can go home Saturday or maybe Sunday.

The remainder of the journey is more like a marathan run that is going to last five years. I know we will all be there to see him cross the finish line. I specially want to thank all of you who wrote back yesterday. It meant a lot to me.

Dhaniavad (that is Thankyou in Hindi). . . . . .from the heart. Ambi.

An Auspicious Day (maybe)

Sachi dodged the bullet and did not need the feeding tube. He has, however, been advised to keep a close eye on his hydration status and go for IV fluids 2-3 times a week, even when we are in Lincoln. Once his swallowing becomes easier he will be able to maintain his fluid intake orally. This may take about three/four weeks. So we continue the regimen of daily radiation and once a week of chemo this last week of our stay here.

I have discovered that when dehydrated Sachi becomes crabby and easily annoyed. After IV fluids his demeaner dramatically changes to a loving, caring, good natured, easy to be with, contented husband. So I am sending a clarion call to all wives: when your hubby asks for a glass of water, give him the whole matka (Indian terracotta water container).

Thirty-four years ago, today, Sachi asked me to marry him (now that I think of it, I had just served him cold water from the surahi in my room). I guess the stars were lined just right for us that day. Few days later we wrote home and informed our families about our decision. The whirl wind that followed in our traditional families still creeps up in our conversations today. I will never forget the day Babi, just out of his teens, came to visit us. His wide eyed curiosity and easy acceptance instantly won me over. We got a day of getting to know each other when Sachi happened to be on call. During the day Babi lost a good hearted bet (I forget over what) and owed me an ice-cream treat. We decided to walk to the nearby shopping place for that. However, few minutes into our walk, Billoo, my mom's youngest brother and my self appointed guardian, spotted us and vroomed to a halt in front of us on his big motorbike. At six foot three inches tall, wearing leather boots, burgandy turban and upturned mustache he was a sight to behold. In an aggressive tone he asked me, "who is he"? I, just a year younger than him and winner of many childhood battles, would have waved him away with my hand like an annoyance, but looking at Babi standing petrified next to me I realised that Billoo would win this battle. So I grabbed Babi's hand and ran back into the hospital campus alerting the guard with, "don't let that maniac in!". I hate to think of what would have happened if Sachi had been with us. As it happened the two titans met properly at the wedding and grew to like each other indeed. Few days after Babi's visit Bou, Sachi's mother, sent me a beautiful red silk Oriya sari in reply to Sachi's letter to her about me. Things moved easily from that blessing on. Our families have been able to bridge the gap between two different religions, cultures and languages and form a bond that nourishes us till today. It was really a good day when I met Sachi.

---------------------------------------------

I wrote the above before going to bed late last night. Sachi wanted to add a few succinct lines of his own but not at that time. A whole night and a day is over and he is not feeling well. So I will finish with an update for now.

We spent the better part of the day in the Mayo clinic (just like yesterday). We met with Dr. Daniels (the resident) in the morning and he ordered more IV fluids. Sachi went in for his radiation then. At 11:30 we popped back in the hotel as Sachi wanted to have his two boiled eggs. He ate a little bit only and left the rest for later. We then went back to Mayo for some bloodwork. This showed Sachi's white blood cell count to be low (1.6). I am told that this is common during the treatment and they did not look worried. However, this prevented him from getting his last chemo. We have been told that this is nothing to worry about as five chemos are pretty adequate. The sixth one is put there as extra, in case one misses a week due to side effects. Sachi did get his one & a half of IV fluids. Usually he perks up after infusion but today this did not happen. He is quite weak and drowsy. We came home in a wheelchair. He has been mostly sleeping after that. I guess this is what they meant when they said that this treatment will be rougher than anything else you have gone through. Tomorrow Sachi has another appointment with Dr. Garces before the radiation. Then he has a scan (MRI) and an infusion scheduled. I am tired but cannot sleep. If you happen to read this today write me a few lines. I am not going to pick up the phone but it will be wonderful to read your message.

Ambi.