The Anachronistic Idealist

A beautiful 8 year old with relapsed-refractory leukemia was gleaming with happiness and joy. All she wanted to do was play. Princess’s (a nickname) mother was at the bedside, listening to a group prayer session, praying to God to help in this difficult time. She looked miserable as we had just explained that despite all our therapeutic attempts, Princess’s disease had come back with a vengeance. Sometimes I forget the reality that my patients go through when they look well, and the need to balance giving joy in the midst of a grim reality.

I often think back to a Dr. Who special, where he tells a mother who “lost” her husband (won’t spoil it for you), who is hesitant to celebrate a holiday,

“Because every time you see them happy you remember how sad they’re going to be. And it breaks your heart. Because what’s the point in them being happy now if they’re going to be sad later. The answer is, of course, because they are going to be sad later.”

Distraction play (yes I know thats technically not a valid term for an 8 year old, but it fits) worked well as playing with her helped her distract herself from the mouth ulcers and pain she had developed. I am grateful for the opportunity to help her in change in her pain medications.

Today I met a long term survivor patient whose name was slightly odd. His name was bolorai rai . ( name changed for privacy)

In Hindi bolo means tell, and it is very odd to have a name that starts with bolo so I inquired with the father how this came about.

the father name was Rai.

When they first came to the hospital, the father was in a very distraught state. At the counter where patients files are made, there is often a rush and patient families who are already emotionally reeling from the diagnosis of cancer are often not in a fully cognizant state of mind.

“Nam Bolo!” ( what is the name?)

Huh?

“Arree Patient ka nam bolo!” (Come in tell the name of the patient)

“Ahh….. Ahhh…”

“Bol!”

“.. bolo Rai Rai.”

His actual name is Nikhil 😂

Rain brings life to this city. It washes away the filth on the streets as rivulets of water uncover the hidden beauty of Mumbai.

It is an apt example of this city. The atmosphere may not be clean, but the attitude of people here for the most part is non judge mental and free minded. The joy that drizzles bring is evident on people’s faces and in their cadence as they stumble on a cloudburst.

One of the few sanskrit quotes that has meaning for me.

Satyam Bruyat (Tell the truth)
Priyam Bruyat (Tell the truth pleasantly)
Na Bruyat Satyam Apriyam (Don’t tell a truth that is unpleasant)
Priyam ca nanrutam bruyat (Don’t tell untruth even if it is pleasant)
Esha Dharmah Sanatanah (This is the path of sanatana dharma)

This doesn’t translate to one should not speak the truth if it is unpleasant, but rather say it in a way that does not cause harm to the person because of your use of words.

Today’s story is a an example of that.

A patient comes barging into the OPD today (not uncommon). Though it has been many months since I have seen this patient, the grandfather starts talking with pressured speech and begins to sob. As I thumb through the chart, it becomes obvious that since my last encounter, my colleagues have appropriately palliated this young sweet boy due to progression of disease on treatment in a case with a poor prognosis. On inquiring what has happened, the distraught grandfather replies that he had just come from our dietician team and that he was told never to come back, and that his file was “closed” (means no further treatment to be given). Though source of the stress was likely less related to the dietician team and more related to the recent palliation of his active playful child, it was likely that a terse conversation took place between the patient family and our ancillary support team, as often the directive mode of communication is used while talking with patients here. It is not intentional, but not excusable as the last thing a palliated patient wants to hear is “don’t come here anymore.” Even if it is true that we cannot offer anything, we should not withdraw our emotional support in their time of need.

As a team, we are all guilty of this, but losing our humanity in the pressure to get work done will slowly drain the compassion and respect that all people, regardless of class, deserve.

This is a shout out to those who do the jobs that no one else will do, and they do it with heart.

Excel sheets are a bane to every clinician, and thus they avoid it and words like data entry, cross tabulation, data fidelity, etc. like the plague. However, one cannot escape data. The unfortunate reality, is that many decisions we make in life are made based off previous data (decisions we have made, etc.) and a little bit of data fidelity goes a long way.

In a hospital, life and death decisions are made off GOOD quality data. This is the key word, as often the data is entered by people who are overworked and the quality can be questionable. Many assumptions are made even while entering data which is unfortunate as it affects the whole machine. Here are 2 small stories, one with a good example of why we need to thank the people who do this job with passion and another with an example of what happens when you put someone who is overworked and underpaid on the job.

Story 1: Excel with heart
Cancer treatment has made great strides and now that we have more survivors, we are learning about all the side-effects our medicines have caused. To study that however, one has to do the dreaded data entry and cross checking to make sure we are accurately documenting side effects. It is a very tiring and cumbersome process.
One girl that I work closely with as a trainee has been essential for many successful projects, expressed an interest to learn statistics. As always, this has to be taken with a grain of salt as to learn stats takes a lot of patience. At the time, we had an interest in long term survivor cardiotoxicity. It was a relatively simple project, but did require her to go over 400 patients data briefly. However she surprised me when she not only did her own literature search, identified other variables of interest, and cross checked the whole database! Her statement was a testament to her interest.

“I want to understand what I am looking at and make sure the data is accurate.”
” I love Excel.”

To understand why this is important, 95% of any work is to make sure the data is in good shape and 5% is to actually do the analysis. Most people I have met in life, are not willing to do the first part and only want a quick, sloppy answer to make a quick publication. But here was a person willing to go the extra step and may not even be first author on a publication but did the job because she loved it. These are people who deserve to be taught and hopefully I will be up to the mark.

Story 2: Overworked, tired and now I have to do what?!
Doctors are often overworked and have little time for themselves. In addition to that, at large academic institutions, a large amount of pressure is generated to do research, publish as a first author, and do all the scut work of the bosses. In India, its a different culture as many residents will actually prepare their attending’s presentations, book chapters, etc.
This is a story of an overworked resident with an attending who could care less about her data.

As always, I am most popular when it is time to submit abstracts. And its always the last week before submission. (Side note: I was guilty of this also)

“Sir can I sit with you today?”
” Siirrrrrr please help me, I don’t know what my attending wants ”
” Sir, what is a univariate and multivariate analysis.”

And attendings

” I know that this is significant, if you just divide it like this and this” (thats not how statistics are meant to be)
More on attendings and statistics later.

Back to the story:
There is this dataset with patients who expired unfortunately from seizures in our hospital. As with many things, the data was collected after a significant amount of events happened to help us better define WHAT was it that caused such significant mortality.
And as always it was 2 overworked and significantly stressed out (p value <0.05) residents who collected this data at the wee hours of the night. One resident had almost no exposure to excel let alone statistics and when it came to abstract submission, she HAND CALCULATED the demographic data (I have a picture of this for proof).
Her attending, as like many, didn't concentrate on each individual data points with her but rather said in a very blase manner, "Do this, this and this."
As an aside, attendings here are also overworked in different administrative tasks and clinical work, so equally overloaded.

3 days before submission, she came for the data analysis part. This is a little bit of griping, but cleaning up an excel sheet for data analysis, though not difficult, is time consuming and ANNOYING. And as with most retrospective data from residents, there is only one thing we can say after analysis. "This data is suggestive of this, but more data is needed collected in a PROSPECTIVE manner."

The data cleaning, analysis and graph generation done, I get a little peace after finishing 2 other projects.
At Friday 10 PM, (abstract submission midnight) my consciousness makes the hands send a text to this girl. "Everything over?"

A frantic phone call comes, "Sirrrrrrrrrrrrr, please help me. No one has looked at my abstract and I cannot reach my attending. I don't know if what I have written is ok."
The abstract comes like a septic patient ready to konk off. After resuscitation, intubation, and pressor support, the abstract is sent back for submission.
Abstract life saved.

To this day, there is no blame or anger, just laughter. I will forever remember "SIRRRRRRRR" (its like a Masai baby ululating).

“We think of marriage as a choice. Whether we want to get married or not. Many have expectations of what they want from their partner, whereas some do not have that luxury, as the prospect of actually getting married is difficult to conceive.” Today are 2 stories of such dilemmas.

Story 1: Obstacles only make me stronger.
A 32 year old lady with a history of a brain tumor came to my clinic today. She was treated successfully and has been cancer free for almost 20 years. As part of the long term survivor clinic follow-up, we often ask about their education, job, and marital status. She was happy to inform me that she had successfully completed a Bachelors degree in communication, and was working in a government post. When asked regarding marriage, she replied she was not married. To give better context to the next sentences, I must confess that I often don’t make eye contact with patients while I am filling out forms (This is why I HATE forms as I miss more important things than demographic info). My next question “Do you want to get married?” was met with silence and after a while I looked up and saw tears glistening in her eyes.

“Because of my cancer diagnosis, it is difficult to get married. No one will marry me.”

In front of me is a beautiful 32 year old women, with no major signs of cancer treatment that anyone can make out, just a small forehead scar. How bigoted a society are we? We all think that because we are cancer free means that we are not damaged in some way.

“Who would’t marry you, you are so beautiful” I replied (Being from a different culture, this is not considered flirting with someone but a genuine compliment). She smiled replying “Its not an issue, as I have found more purpose in life through my work and taking care of my family.”

What a deep statement. Here I am, a single person who sometimes worries about companionship as I get older and here is my contemporary who has channeled that worry into something more productive. We are always told to live in the moment, and here was someone actually living this ideal.

(Source: patient’s sister)
Story 2:
At 8 years of age, ________ was diagnosed with a rare brain tumor which is very difficult to treat. Though she initially received surgery and radiation, the tumor started coming back every few years requiring multiple interventions including redo surgeries and local radiation therapy. As it was a slow growing tumor, she often went through a couple years before requiring treatment, but as you can imagine, each visit was a source of trepidation and anxiety for her parents and family. At the age of 24, she expressed a desire to get married. Her family, a very quiet yet resilient bunch, started the process of looking for a partner for her. In Indian society, a past history of cancer is a major hurdle in the journey to find a suitable partner in life. Oftentimes, as was in this case, society in its all mighty righteousness, decreed that this was not only morally wrong but a great injustice to the family of the groom, and that they should not pursue this course. However, being the stalwart family that they are, they persevered and ended up with a man who looked beyond the social stigma associated with this diagnosis and found a beautiful woman with whom he wanted to spend his life with.

Though India is still yet to come to grips with the reality that pediatric cancer survivors are growing and that they also are human beings with emotions, I am optimistic that like in the West, this attitude will change for the better.

The image of India in the outside world is an oxymoron of beautiful unkemptness. 2 stories come to mind, each with a different lesson.

Story 1:  True hospitality

My aunty and uncle here in Mumbai randomly met a 58 year old lady from France who was touring India with 3 huge bags and was strapped for cash. Their friends from France called them to help her with travel plans. As a foreign tourist, she had very unrealistic expectations of how to safely travel in India. Out of concern for her safety, they arranged people for her to stay with in Chennai, Cochin and made her stay with them in Mumbai. When asked why, they replied “Someone has to take care of her.”

Story 2:  Toilet habits tell alot about a person

As an American born person of Indian roots, cleanliness is often an issue when living in India. As most Indians born outside of India, I often chalk up the cleanliness up to socio-economic status, but today I was proven wrong. In our co-ed hostel, we have both female and male doctors from India and other countries. One of the foreign lady doctors from Myanmar today  lamented how dirty the ladies bathrooms had become after some of our new female doctors had joined. Though Myanmar is a markedly lower income country compared to India, it is interesting to note that their toilet habits are much more sanitary than the pinnacle of our society.

Living in Mumbai over the past year has impressed upon me that introducing yourself is NOT part of Indian culture, and that if someone ignores you it is not being rude in their mind. But exceptions must be made for guests to India, otherwise they  develop the a misunderstanding of how beautiful this country is. The new residents who have joined over 1 month ago have not even said hi to this foreign doctor who has come from another country to train with us. And this is the pinnacle of our society.

This country truly has both sides of the coin, and I fear that most of the indifference that has developed is in our current generation. Its not purposeful, but it is part of a a slow decline in the fabric of our society. Imagine, this foreigner will now go back to Myanmar and have only a negative opinion of this stunning country due to a lack of empathy. As an American and an Indian , I want people to love both of my countries through me.

Those who see the suffering at their most intimate moments, often forget about the emotional vulnerability of the patient at the time of their visit in their rush to finish the day’s work. A tender smile, a knowing glance, and a gentle touch go a long way to alleviate the enormous weight each patient carries. Though we may not be able to change the outcome of the physical condition, everyone has the ability to take some of the burden another carries.

Story 1 – A beautiful soul

I saw a beautiful girl, a 14 year old girl with metastatic osteosarcoma (cancer of the bone), who had been palliated recently. Though its a busy clinic, I try to spend more time with our palliative patients as they often have a lot of hidden worries and take time to discuss what they are really feeling. As she walked in with 3 legs (2 crutches and 1 intact leg), my heart was overwhelmed with grief as she narrated the story of her recent relapse. In the 15 minutes I got to spend with her and her mother, she cried, her mother cried and I cried inside.  Frustration often causes physicians to become thick skinned, as we want to help but we are limited in what we can do. A knowing silence, a gentle touch and tears were the only medicine I could offer her. I will never forget the bandana she wore to cover her head, the tear brimmed eyes, and the acceptance of something no child should have to bear.

Story 2 – A Mistake

In my rush to finish clinic and get out, I was rapidly seeing patients and issuing commands like I was an army commander and the parents were my soldiers.

(In Hindi)

“Get this medicine”

“Please listen to me instead of talking”

“SISTER (nurse) check this patients vitals”

As this was going on new patient’s family member came  in next. In my haste and without looking at him, I uttered “******  has metastatic disease and his chance of cure is very low” After a small period of silence, I looked up and saw tears welling in his eyes. Though its common to discuss in this way, I realized that this family member was too young to be the father. “Where is your father?” I asked impatiently. As he explained that their father had died when they were young,  his mother was at home with her infant, and this 15 year old boy was the only care-taker for ******,  a mental frame-shift took place and I realized what a grave mistake I had made for this boy. What a mental burden to place on a boy. The look on his face, when all hope is lost, is something I hope to never do again in the future.

We all seek some purpose in life. Whether that is through our career, personal relationships, or other passions, we strive to continually improve ourselves. The moment we stop is when life stops.

This blog tries to capture the small story of this person’s life and his interactions with other’s lives, with thoughts in a  third person perspective and real life stories in first person.  It is mainly a way for this person to ground himself in reality and fuel his passion.

A word of caution, most of these stories will be patient related, due to the nature of his career. He would like to cherish these memories and someday remind himself of these intense moments of his life.

Patients stories are kept fully anonymous and this blog is private for my sanity.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton