Absorbing Bumps on the Road

Today March 31st. was the begenning of the end of the radiation and chemo. Four more days left. I had my radiation treament today. Since Dr. Garces was busy the resident saw me. There has been quite an increase in 'thrush infection' (in the mouth) with inflammation which has made eating & drinking that much more difficult leading to wt. loss & drop in bloodpressure. I felt much better after I received two litres of fluids.

Counting down is kind of fun, almost feels like things are coming closer, like a mirage & then moving away at the last moment.

(Sachi has left this blog at this point and fallen asleep, so I will continue).

Our weekend was a Khatta-Meetha (sweet & sour) experience. The sweet part was the time we spent visiting with our families; Khatta was watching Sachi get so tired and dehydrated that we had to cut our planned activities short. He went to bed looking extremely exhausted and for the first time scared me somewhat. Having supportive families around made the crisis only a bump in the road rather than a road block. Next day we all met again, closer than before and more determined to keep holding hands through difficult times. Everyone left on Sunday and we spent a quiet rest of the day. Thanks to Veerji & Gurjeet, Mama, Ashok & Ayush and Suraj & Torrey for their company and for caring enough to come so far to see us.

Sachi, inspite of what he has written, still looks quite sick. Maybe he will get some more fluids tomorrow. In this sixth week of treatment things are painful and difficult. The medication and dehydration are making him drowsy. He falls asleep in the middle of conversation. Tomorrow we see Dr. Garces and discuss the need (or not) for the feeding tube. We will also find out how often and when we need to come back for further check-ups. The first appointment in the morning is at 8:00 AM so I better go to bed too. Till next time then,

Good night. . . . . . . . . Ambi

Weekend visitors

Five weeks over. One more to go. It is Friday and the world is winding down for a weekend. It is a good time for families to get together. Suraj is driving over from Lincoln with his friend Torrey to spend Saturday and Sunday with us. Ravi has a track meet and Jyoti & Jeff have work so they could not come. Suraj is on spring break and has decided to check up on us. He has been taking care of the house during our absence and doing everything that comes with the territory. We are so proud of the way he has shouldered this responsibility and handled being home alone (with Mithu - our Mackaw). We can hardly wait to see him tonight. Father and son have so much sports news to catch up with. Suraj is a walking encyclopedia of information and is blessed with incredible memory for anything that moves-sports , cars, planes & yes ultra fast video games. He likes to analyse strengths and weaknesses of different football and basketball teams and predict winners and loosers. His predictions are uncannily accurate and Sachi likes to chat with Suraj and brush up on his sports IQ.

This weekend we have some other family members coming over too. My cousin from New Jersey, Veerji (means elder brother) and his wife Gurjeet, are coming over to cheer us up. Veerji and I grew up together as kids in Simla, a beautiful city tucked away in the folds of the Himalya mountains. I was five when dad got transferred to Nagpur and we moved away for a while. I could not understand why Veerji was not coming with us. That is when I was told that he was my cousin and had to stay back with his parents. Ofcourse Veerji and I have ignored that small fact and have always been close like brother sister. With the passing away of my brother Kuku, Veerji and Gurjeet's coming means that much more to me.

Sachi's cousin Mama is coming over from Seattle with her son and her husband (Ashok) whom we will meet for the first time. Mama's mother is Sachi's Bandana mousi (mother's youngest sister & even younger than Sachi !). Ashok is in medical IT for Mayo clinic. We are looking forward to spending the weekend with them and getting to know Ashok and their young son.

Sachi is doing very well considering how sick he had gotten a few days back. The IV fluids have done wonders. Water is truly the 'elixier of life'. It has brought much needed relief from fatigue and dizziness. This has enabled Sachi to again walk back and forth easily from hotel to clinic and also pose for photographs in front of the numerous art works scattered all over the Mayo Clinic. The half boiled eggs and liquid supplements are maintaining the weight and we are keeping our fingers crossed regarding the Peg tube. The inside of his mouth is raw and gives him a lot of grief. For this he takes pain medication, adjusting the dose every few days. We will be meeting with Dr. Garces on Tuesday who will do the weekly evaluation and give us the final word on whether the feeding tube is needed or not.

All of you, our dear family and the whole 'extended family' of friends from far and near, have generously shared of your self and your time and made our ordeal easier. For this we are eternally grateful.

"When life serves you lemons

Make lemonade"

Thankyou for sharing the lemonade with us.

Ambi

Almost there

This is the atrium-like lobby of the Mayo clinic. The two pictures were taken couple of weeks back. It is full of light and has stunning views of the tall buildings around it. We spent a lot of time on its tenth floor today. Yesterday Sachi developed fever, looked quite sick, seemed disoriented few times and slept a lot. When awake he was restless and paced the room. So today we asked to see his doctor who evaluated him and found him quite dehydrated. Sachi was asked to use the wheelchair (low blood pressure) and go for some IV fluids. Later he got his radiation but the chemo has been postponed until tomorrow. The doctor also discussed the possibility of peg tube (feeding tube) since Sachi is continueing to lose weight. They will watch him for 2-3 days and then make the decision.

After the IV fluids Sachi perked up and has been trying to boss over me again (good luck). He is quite lucid today and resting comfortably. Sometime back he even ironed two of his shirts. We had plans to spend the afternoon with Sarbani (close friend from Lincoln) who is visiting her son in nearby Minneapolis. Sarbani: Hope we can see you on Thursday on your way home.

I have started a new painting (third one). I paint when Sachi is resting. These days there is more time than before. Ravi seems to have had a really nice birthday. Jeff and Jyoti took Suraj, Ravi and two friends to The Cheesecake Factory for dinner. Then the boys went for a movie and Jyoti went to the hospital for her night shift. Thankyou all for the birthday good wishes.

I am so glad that Sachi looks better today. Thank goodness for small blessings.

Ambi

Happy Birthday Ravi

Nineteen years ago the baby of our family was born (March 24th,1989). He came seven weeks early and has been speeding through life ever since. He is a live wire and keeps us on our toes. He has outgrown the days of broken windows and holes in the walls but is still trying to remember (most of the time) the size and herculean strength he has grown into when he gives us hugs or maybe just nudges us to pass us by. Starting from getting A+ in recess and asking the librarian in first grade to get books without words he is now a freshman in Nebraska Wesleyan, gets As and Bs in academics and plays football for his college. He will also do track this spring. In summer he wants to attend a medical camp in Omaha and maybe do a junior internship as a reporter for a Chicago newspaper. The top picture is of Ravi on his eighteenth birthday in front of his birthday present. In the background is dad's truck. The bottom picture is of Ravi at eight months, standing balanced against the Poplar trees, in the palm of his Papaji (grandfather)'s hand.

Dear Ravi, we loved you on sight and you will warm our hearts always. We wish you happiness and love in life. May you always like the person you are, focusing on becoming a man of value rather than a man of success, which matters more at the end of the day. God be with you always.

LOVE, mom and baba.

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We left Lincoln at 2:00 in the afternoon and reached our hotel in Rochester around 8:30 PM. Sachi has the Radiation appointment at 10:30 AM tomorrow morning. He is experiencing quite a bit of pain, all expected in the fourth week, rough nevertheless. He is continueing to loose weight. Liquid diet is turning out to be inadequate in supplying all the calories. All this and the pain medications are making him a little unstable on his feet. We are not letting him drive anymore and slowly he is accepting this pending recovery; hopefully it would be for a few weeks only.

Write to us about what is going on in your lives. We sometimes get lonely and the blog always cheers us up. Till next time,

Ambi

Home Again

Its Friday of week four and we have come home again. When we started from Rochester it was cloudy, windy, snowing and frigid 21*F. We entered Nebraska under sunny skies and 56*F. This must be the good life state. This picture was taken in the setting rays of the sun, soon after we arrived. The first thing I noticed in the house was how big our kitchen looked compared to the kitchen in the hotel. I wanted to start cooking right away but it was friday and Mahapatra family's movie night. Jyoti, Sachi and I saw 'Miss Pettigrew Lives for a Day' and Suraj and Ravi saw 'Drillbit Taylor'. Both of these were at The Grand so technically we were together. Jeff was busy watching the basketball games with friends in Omaha and will be coming tomorrow. We ate dinner at Amigos and then I went grocery shopping (fridge was empty); the kids and Sachi watched Conan O'Brian.

The drive home seems to be getting shorter and easier. Sachi slept through most of it. When he did wake up it was to lodge a complaint against me for not letting him drive. He has lost about 18 lbs. and is getting tired easily; his spirit remains strong though and he finds strength to join us in most activities. His blood tests are still coming out good and the Dr. is impressed with him. When I came back from India and saw him waiting for me at the airport he looked thinner and younger than when I left him. By now he is mainly on liquid diet. He likes half boiled eggs without salt so they don't burn his mouth. He takes Boost and other supplements when we have our meals. Medicines for pain and nausea are working fairly well. We are gratefull that his symptoms are bearable till now. I admire his quiet acceptance of cancer and every thing it has brought on him and love him more than ever before.

My trip to India was short and sad. I saw more tears in my family's eyes than ever before. At the funeral my brother's two sons tied the ceremonial white turban symbolising the shift of family responsibility on their heads now. This is an old sikh tradition and looked tragic and beautiful on my young nephews. My sister-in-law (their mother) sitting next to them will be taking care of the family for a long time until the kids become independant. No turban for her but I know she will shoulder the responsibility well. My brother Kuku will be missed. Now it is just my sister and me. Bablee is there and will feel the brunt of loneliness. My mother and father are inconsolable and second guessing as to what else they could have done to avoid this tragedy. I am thankful to all the family that gathered from far and near to share their burden. Thanks to all of you too for wishing us well.

Sachi and I will head back to Rochester on Sunday. Jyoti, Jeff, Suraj and Ravi will celebrate Easter with Jeff's family. Thank you Norma and Jim. Today is Holi (the festival of colors). In Lincoln we celebrate it in July.

Happy Holi and Easter to everyone...........Ambi.

Quick response to medical student Naren.

Naren's numerous Qs, concerns, conflicts, some confusion, and with the "medical halo" took me spinning back 45years down a similar path .Answers came rather slow due to my exceedingly busy extracurricular activities in wide range of areas (which I have not recommended to anyone since). Then my very reputable Gem of a father physician insited on setting examples for learning rather than formal teaching principles- which added to some more delay.

A very early dictum in medicine- we strive to provide comfort to ALL, relief to some(if medicines are effective), & true cure to very few (even cutout tomors can regrow). So comfort is the main focus here. Gently greeting patients, holding their hands in a friendly grip, listening with interest &looking into their eyes with care & compassion can put even a hostile patient at ease ; comfort more than half accomplished. Believe me this doesn't take more than a couple of minutes out of our "busy schedule".

Medical Ethics allows us the previlege (not birth right) to take care of ailing humanbeings setting in the process very dmanding high standards which also is a great previlege. As humanbeings everyone has significant intermingling of psycho-social-economic factors which makes assessment more difficult. Ethics allows us to use such information only for helping in patient care and never to snap back at patient with insulting or demeaning manner, no matter if they come from prison, nursinghome or mental retardation center. We are absolutely NOT allowed to be critical or judgemental about unrelated factors & most importantly patient him/herself.

Assuming that all people are created equal, MD degree should not impose any sense of "superiority" over patients. When they are in office or hospital their wellbeing is totally our responsibility & needs to be delivered with grace ,respect & compassion. Before leaving they should have a fair idea where else the other health issues need to be addressed. There is a need to develop a graceful way to thank the patient. Remember in the whole process we didn't do them any favors; rather their coming in helped put food in our plates! The bottomline of all these is simple- just treat every patient as you or your family would like to be treated.

For most average people (Naren is an exception in this line) following such guidelines in a consistent manner the whole lifetime is not easy. In a conscious effort one needs to develop unselfishness, love, tolerance & humility (means: you donot think less of yourself but less about yourself). These are the fundamental principles of spirituality, & accomplished thru prayer & meditation more for others than for ourselves & leaving the outcome of every effort in HIS/HERhands.

Naren- In addition, several quotes, cliches &sayings also shed more light. Try not to be a man of success but of value; be the change you want to see in this world; to accomplish anything one needs to be humble like dirt; courage is not absence of fear but walking thru it; it takes more courage to tolerate pain than inflicting; self esteem comes from doing esteemable acts. We should
also be well aware that age old recognized characters of- ego, pride, arrogance, anger, resentment, tempertantrums etc are reflections of our fear & insecurities and not of strength. As we gradually replace these with spiritual principles, we steadily change from restless, irritable & dicontent personality towards peace, serenity & happiness.

Let's complete with the prayer:
God grant me the serenity to accept the things I cannot change(outside world),
The courage to change the things I can(my inside),
And the wisdom to know the difference.

Goodbye untill later- Love you all.

Quick response to medical student Naren.

Making moments count

Hello to everyone from Jeff and Jyoti!

It was at this time last week, as Jeff and I were impatiently counting the days until we would be with mom and baba, that we heard about Kuku Mamu's death. Unfortunately, Jeff never got the chance to meet him, and all he knows of him are the photos on our walls and my childhood memories of riding on his scooter and being spoiled with desserts. Kuku Mamu always surrounded me with undivided attention and love, and the only child in me remembers wondering why he needed to get married when he had me. :) In every photo I have ever seen of him, he looks like an Indian James Dean, but I knew him as the Mamu who with his endless affection, made me feel like the only 6 year old girl in all of India.

My family has dealt with baba's illness with strength and courage we didn't even know we had, and I know we will get through this next hurdle. I can only imagine how emotionally draining this has been on mom and baba, but I know that mom being in India right now is worth the temporary distance between her and baba. My Auja seems to have had a very hectic week with a badminton tournament and will be unable to visit baba due to a fever. We are all a little nervous about him being alone until mom returns Thursday morning, but as usual baba exaggerated our fears by offering to rent a crib for himself for the next couple of days. We wish!

We all had a great weekend despite mom leaving on Saturday, Friday night we feasted on food made by mom and our dear family friend Carmini Aunty. Saturday evening was spent at the now infamous Canadian Honker, which truly has delicious food, but mostly sounds hilarious when spoken with an Indian accent. Baba and Ravi and Torrey had a busy couple of days catching up on even more shopping and movies. We are counting down the days of this week and are ready to welcome mom and baba home on Friday.

Enjoy the photos of our weekend and of Kuku Mamu and family. Love to everyone and thanks again from the bottom of our hearts for your support.

HELLO AGAIN !

The internet at the hotel was down these few days , & we have been missing you all. Feels nice to be together again.

First of all thanks to Kelly for his beautiful song " the wasted years"- brings back memories of many mixed emotions, a few good & many not so good. By now though ,we have learnt not to dwell in the past & at the same time never to shut the door on it ( not to forget where we came from).

One annonymous prayer says-" I asked God for all the things so that I can enjoy life, & God gave me life that I can enjoy life. I didn't get anything I asked for but everything I hoped for. Almost despite myself I am the most blessed person".

In the last few days there have been two deaths in the family. Ambi's younger brother succumbed to septicemia & my younger brother's father inlaw to pneumonia. Very tragic incidents & heart breaking indeed; but somehow lives are still moving along as predestined & preplanned by HIM. Ambi is currently in India for a few days midst her dear grieving parents & all other relatives, in the process of comforting & supporting eachother.

Before Ambi left we had a hectic weekend with Jeff, Jyoti,Suraj, Ravi, their friend Torrey & my niece Seema from Boston, along with Vivek & my brother from India who were already here. Eating out in the famous Canadian Honker Restaurant & a movie on saturday. Ravi & Torrey will stay untill tuesday. My uncle & aunt from Kalamazoo will be here tues-friday. I think I am getting way more attention than I am used to!




The fourth week of therapy is about to start in afew hours. Eating has become slightly more difficult, therefore trying to concentrate more on supplements to avoid too much wt. loss. Everything else is coming along pretty good.

The hour is getting kind of late enough to signoff now. Will retire after some simple prayers. Ofcourse those who have read my brother Babi's comments can't the miss the fact how well he has dressed up those simple words into beautiful phrases with a gentle stroke- makes me say WOW! Thanks to you again.

Lots of love to all of you- good night to USA & good day to India & Bangkok.

Meet The Marathon Man

This is Vivek with his family. He has been a marathon man with unlimited energy, ever ready to help everyone (what a rare quality in a young man). He has driven Bhai back and forth from chicago to Mayo three times in three weeks! is being the perfect host during Bhai's visit to America and is also keeping us entertained, all at the same time. He is a gem and we love spending time with him. The above picture was taken by Sachi at Naren (Vivek's older brother)'s wedding in December. Vivek is on the left; to the right are his mom (Vicky), Naren and his dad Babi (Sachi's youngest brother). Babi and Vicky... You have done a wonderful job raising your boys.

Sachi had his 12th. Radiation and 3rd. Chemo today. He seems to be less tired as compared to yesterday. The new pain medication (Oxycontin) prescribed by Dr. Garces (not Dr.Grace) yesterday is working out good. Sachi is experimenting with different things to find relief. He has just discovered that the cough drops 'Cepacol' numb the mouth enough to make swallowing easier. He plans to use them just before eating. The new suggestion about the popsicles sounds like it would work. We will go to HY VEE (yes they have HY VEE in Minnesota) and bring a few flavors. Thanks Nick. His best meal of the day is breakfast, then it becomes progressively harder for him to eat. He has been able to avoid the feeding tube till now and that is wonderful.

AMBI.

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From Sachi

The ongoing blog postings continue to comfort us, enriching our lives with varieties of beautiful concepts from so many beautiful minds. What has been overwhelming to me are frequent, personally directed compliments, with carefully selected adjectives (some outside my vocabulary) which, though are acts of kindness, can shoot my ego thru the roof (unless I am careful). I am sure this is coming from my discussions of certain spiritual principles which might have overspilled a little. I am a novice in this field (living on borrowed ideas & lessons) , trying to learn thru reading, hearing, listening, discussing and practicing in daily life as much as possible. The key word here is TRYING. That is all I can do & leave the outcome in His/Her hands. I have not accomplished anything nor reached any destination, which is not the goal anyway. We have been taught: it's the journey not the destination that helps growth & progress in the right direction. That's all I am trying to do. If it seems more than that, it indicates I am only talking the talk and need to walk the walk (into action) more often. And of course there is the huge effect of perception (life is 90% perception 10% facts), that explains the wide differences in interpretation of a given event. One more very important concept: Beauty is in the eyes of the beholder (smell of flowers will make some look for something beautiful, and some others look for a funeral !). That means, when one gives compliments, it reflects the goodness of that person, not so much of the one getting it. So, all of you out there pat yourself on the back for expressing your goodness which is uplifting for everyone who reads them.

For all these ongoing wonderful interactions-- our heartfelt thanks go out to Janelle again, in addition to what Babi wrote a few days ago.

Best wishes & love to all of you, keep in touch.

WEEK THREE

Meet Sachi's Bhai (older brother) and Apa. Bhai is visiting us from India. He is staying in Chicago with Vivek (youngest brother's son) and comes over with Vivek for weekends. This week they are here for the whole week and we are so glad to have them. Sachi has a close knit family and it means a lot to us and to the other brothers and sisters to have Bhai with us during this challenging time. Many many thanks to Apa for holding the fort at home while Bhai visits us. This picture was taken by Sachi in December at (Babi's older son) Naren's wedding. Happy times like that will come back again.

Sachi is beginning to feel the effects of Chemo and Radiation. His throat and mouth are sore and painful. He is increasingly preferring to have meal supplements in the form of shakes. He wants everyone to know that they come in many flavours and are not so bad. I think they need to come up with mango flavor too, to satisfy their Indian customers. Sachi has lost some weight again and we plan to consult with the charming Dr. Garces for any suggestions and help. Today the Radiation treatment is at 1:30 so we are sitting and enjoying the morning from our bed. Hillary (my candidate) and Obama (Sachi's candidate) are trying to win us over from the TV.

Lincoln was wonderful. We filled in a lot of 'together' time in the short break. Sachi I think over did it in keeping up with us but recovered fast. We were lucky to meet some dear friends too. Sachi was able to consult his dentist (who is a close friend of many years) for suggestions to sooth the inflamed oral mucosa. Thanks Chris. Our drive yesterday was both relaxing and uneventful. I guess we are getting used to coming over here. Leaving the kids was the hard part. The kids of course are grown and are doing fine. Jyoti and Jeff are playing mom and dad for us. We are so proud of them for rising to the occasion and continuing the task of living while we are busy here with Sachi's treatment. We are looking forward to seeing them and Seema (younger sister's daughter) in five days.

Love to all who are joining us in this journey......Ambi.

Baba's home!! Baba's home!!! Mom too.

In true Mahapatra form, within two hours of mom and baba coming back to Lincoln, we were in line at the movie theater. Shortly after, we were loaded with four popcorns, three slushes, a diet coke, and an order of nachos. Just another Friday family night!

We all tried not to get our hopes up too much that mom and baba would come home this weekend, in case baba wasn't feeling well, but he has returned looking just as well as when he left two weeks ago. There has been occasional nausea and appetite loss, but so far pretty manageable with medication. The way they came home with handfuls of shopping bags, it was easy to see what they have been doing with their time when baba is feeling good. Mom and baba are the only people I know who can fit interior design and fashion into their chemo and radiation treatments!

Their visit will be short, since they have to be back for week three of his treatments on Monday. But it has already been a great time and it felt just like home as soon as they walked in the door. Mom has already made a batch of khichri and everyone has devoured the welcome home chocolate chip cookie we bought for baba. We know the weekend will go by fast, but next Friday Jeff and I & Suraj and Ravi will be in Rochester and will be together again soon.

Thanks again to everyone for their support and prayers, they have been a gift not only to baba but to all of us as well. Keep in touch,

Jyoti, Jeff, Suraj and Ravi

Week Number Two

Day six of radiation. It is early night and Sachi is taking a nap. We started the day with an appointment in a social worker's office. She asked a lot of Qs. and determined we are doing OK and do not need her services at this point. Her Qs. did make us aware that we are supposed to be meeting with an endocrinologist to get the thyroid checked. Our dear friend Anup reminded us too. Thanks Anup. The Radiation was at ten in the morning after which we came to the room. At 12:45 we met with a Physiatrist who determined that Sachi needs to meet with a Physical Therapist (for strengthening the left shoulder muscles and massaging the surgical site). The days are filling up with these engagements.

We went to a Grill for late lunch. I had lobster tail skewers and Sachi ordered a prime-rib pannini. Dessert was vanilla flavoured creme' brulee. All this sounds so good except Sachi had no appetite. He ate a little bit and brought the rest to the room in a box. He has been in bed since then. He woke up for a short while and sat on the sofa. I was cooking broccolli for him (in oil with salt). He could not tolerate the smell and went back to bed. He says this is not nausea but having gone through pregnancies that made me sick, I know this is exactly what it is. The doctors have given him medicine for these times but he does not want to take it yet. I am hoping he will get up and have a bite to eat.

Vivek and Bhai have reached Chicago and will be back in a week. Yesterday we all went to see the new movie 'Jodha and Akbar'. It may not be historically accurate but it was a feast for our eyes. The acting, direction and music are quite good. We all thoroughly enjoyed it. I am glad we had such a good weekend.

Both of us will be checkin in for your comments. Thanks again to all of you who write back and those of you who read it regularly to check up on us. Keep us posted with things happening in your life. Till next time.

Ambi