Memoirs

Three Things 

I usually ask a question to my patients. "Tell me three things that bothered you most in the last few weeks." I had the most hilarious responses yesterday - pointing to his wife and two adult daughters, Mr. Taylor said, "That’s one, two and three."

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Matter-of-Fact

Dr. Cooper was matter-of-fact about his prognosis when he visited me today. Eighty two and suffering from a new metastatic biliary cancer diagnosis, he had been significantly more short of breath for the last two weeks. "How much longer do I have?” he asked.

Awaiting my answer with baited breath, his wife let a tear roll over a cheek, and tried her best to hide it from the doctor. I replied, "From the way it looks, we may be looking at a few months."

He quietly took in that answer and replied, "Can I go to Florida?"

"Yes, of course. I'll make that happen."

And we moved to more important matters - how I can make him feel better during these last days or weeks.

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Psalms 116

He came with his wife and children. He was 74-years old. He had the wrinkles of a life lived in hard experiences. But now, he sat in my room listening to my explanation of what I plan to do to take care of his pancreatic cancer.

After I finished, I proceeded to ask him my usual question - "what questions do you have for me?"

He looked at me with teary eyes and replied, "Can I pray for you doctor?"

That question surprised me - pleasantly. He then proceeded to hold my hands and prayed for me. He first thanked God for helping me take care of sick patients, and for my life. In his prayer, he didn't ask for long life or painless days. He just asked God to bless me.

I asked him what he prays for himself, and he replied, "Psalms 116".

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Your God

It was time for me to see Peg after her scans. I had just given her three months of intense chemotherapy as a last ditch attempt to get rid of some cancer in her liver. If this doesn't work, I don't have many options.

"Your scans look great. Cancer has responded well to the treatment. I have been praying for you. I'm glad God has answered our prayers".

"I'm glad. Your God is my God".

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Fab

I lost one more friend. Fab, started out as my patient in March 2013. He was diagnosed in the prime of his health - just because he did a CBC for work purpose. We traveled together in this journey. There was a time when Indu and I took him to a burger place in Shadyside, as he was getting his chemotherapy. He was desperate to see the night lights and eat a burger. None of the nurses or the staff knew about it - till this day, it was our little secret. We were the most unlikely friends - a huge white guy and a tiny brown guy. He had such a generous heart, always the 'gentle giant'. He was loved by everyone. His leukemia was in remission, when one day he called me in November 2015 to tell me he relapsed, in fact, as soon as he heard the news from his medical team in Pittsburgh. We spoke for an hour and decided on further plans. I would get fax of his lab test results in Kentucky. He wanted me to be informed of his entire treatment course. But things did not go as well as we hoped - his leukemia cells never went away with more chemotherapy. As I was traveling to India in March, we texted each other and discussed plans. I told him not to give up - I said I wanted a cancer campaigner for my cancer center in India. He replied, "I will be there in a heartbeat for you, Aju." Recently, we spoke from Seattle where he was away for a novel CAR-T cell therapy - the treatment had not done its job. And, he was worried - rightfully so. He asked me whether he should go for the rough and risky treatment or just let the disease take its course. He decided to go down fighting. He died last night - three years after his initial diagnosis.

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Yea

A month and half ago, I saw her last. I had been giving her chemotherapy for breast cancer. She had disease in brain, bone, liver and lungs. She was weak, but was working actively until January 2016 when I asked her to stop being generous. She was the director of a nursing facility that took care of Alzheimer’s patients. I once asked her why she was working despite her own sickness. She replied, "I want to train others in what I am doing, so this is carried on." Such was her spirit of life. She was an active practicing Christian, who really enjoyed living, and life. She and her husband of 34 years saw me in April - she was visibly quite weak, and forgetful; quite unlike her. Until the previous visit, we were going full course, and she was doing well. I told her that I am stopping chemotherapy. To my surprise, she replied - "Yea" - with her both hands going up in triumph. Hearing her response, I remember laughing out aloud. Her husband was also quite relieved that I was stopping her chemotherapy. 

I will remember her generosity and courage in the face of complete adversity. She loved smoothies!

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Will to Live

What motivates a stage IV cancer patient with extensive metastatic disease to live and not to die? Why is she fighting and hanging on to dear life? 

Margie is a patient of mine. She is in her early 50's and has three daughters. She has extensive disease and is recently wheelchair bound. Always a fighter, she recently asked me a question - "how long will I live?"  

She had worked full time until recently and had been able to walk with a cane. But few weeks ago she became wheelchair bound. 

Her question allowed me to breach a few sensitive topics with her - goals of care and dying. I asked, "what are your goals in life?” 

"I want to live to see my children grow, raise them up, see them marry and have children". 

"What if you are never going to be able to walk?"

"That's Ok, as long as I can see them."

We then talked about dying and how it will come about. I told her she will not be in a state of cognition where she can decide on issues of life support. I asked for guidance. She had it all planned - she doesn't want to be on the life support machine unless I think it is for a brief while. She has two friends who will step in for her should she require assistance to make a decision. 

We ended the visit in perfect communication. I understood her goals in life, and knew her decision not to prolong life on machines. 

She smiled and said, "I trust you, doctor. You have to fight for me."

Trust - the entire doctor-patient relationship lives on the weight of that word, even after either of them breathes the final breath. 

Finally, she shared me the photo of hers that appeared in a newspaper. She was able to watch her daughter win the championship. What motivates my patients to live in spite of enormous health challenges? Moments like these.

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Tale of 82-year olds

This is the story of two 80-year old women who I saw in clinic yesterday.

The first one, Joanne, she came in a wheelchair, accompanied by her daughter. She barely talks. She has severe dementia.

The second was Sherry - she came walking. The book in her hands - "How to save money". She was worried about everything.

The first is not aware of the fact that she is dying. The second is not enjoying the fact that she is living. 

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Faith during end-of-life

I had a difficult conversation with a patient and his wife today. He is facing a terminal diagnosis, essentially a hopeless state. And then I realized he is a Christian. Our conversation suddenly became much easier, because out of nowhere, a glimmer of hope overcame his last days - one of spending eternity with Jesus Christ.

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Cancer Clinical Trials

"In 2014, 1487 brave and selfless individuals agreed to participate in interventional cancer clinical trials through our institution. Together with their physicians, they were convinced that participation in a trial represented the best possible care for their personal situation and were willing to allow all of us to learn something new along the way to help those who will follow in their footsteps. They are truly at the center of our “village” of volunteers, helping us to move ever closer to a world without cancer. All of us owe them our profound gratitude."

These men and women are the true trailblazers and heroes of medicine. I hope more and more of our own patients in India get access to ethically conducted, high impact scientific research. Thanks to the novel immunotherapies, a vast proportion of these 1487 patients responded better than expected to the experimental agents. Although they took a risk, it was probably worth it. One more smile from a loved one, one more vacation trip, a grandchild, an anniversary, etc. That's what it may have given them.

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Touch

Being an oncologist is a special and unique God given opportunity. Of all the types of specialties that I have seen up close, an oncologist has the most special bond with a patient - one that can only happen in the face of the absolute adversity that is death. Often I am left with no answers to the numerous questions about the disease and the future. Any 'guess'timates are guesses anyway. And, I don't have a crystal ball too. In times like this, an oncologist has to use his best tool out of the whole armamentarium of medicine - the Touch.

A touch between two individuals from two different places, situations and life's circumstances, a touch between someone who has a whole life ahead and another who has the uncertainties that the last breath brings forth. As Dr. Sikov mentioned recently, to some exaggeration, in no field can one touch another person and get away with it, but as a doctor. I don't need to ask, be embarrassed or apologize for the touch. In fact, I usually step it up a notch further - I hug.

In that hug, I experience the joy of knowing another person in a most intimate way, by being his sounding board, a comforter, guide and friend. But, in equal measure, that hug adds value to my life just as it brings value to his dying. 

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Words I Never Want to Hear

Missy came to my clinic with her grown-up daughters. She had early-stage breast cancer. “I don’t want chemo”, she said. Soon enough, the two daughters jumped in and started coaxing their mother to do the treatments. I had to break the back-and-forth, and offered my estimates of risks and benefits of chemotherapy. I told them to go home and think through the various options and let me know in a week what they wish to do. On their way out, I emphasized that I’d respect whatever decisions she may take.

A week later, they were back in my clinic. This time, she was quite clear in her mind that she wanted to do the chemotherapy. I would see her every time she came for chemotherapy. She was quite happy with the course. One day, three months into her treatment, I got a call from the ICU. Missy was admitted with heart failure and was quite sick. As soon as I reached the hospital, I went to see her in the ICU.

She was surrounded by her family. Upon seeing me, she smiled through the clutter of the wires and tubes around her face and coherently breathed a few words to me.

“You killed me.”

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I am not heard

I knew that Wilma had suffered from depression from her younger days. Now, as a 62 year old woman with grown-up children and a loving husband, she had nothing to be sad about. She started seeing me during the summer for treating her early-stage breast cancer. Over time, I noticed that she was getting more depressed. Every time she came to see me, she would ask me to give her a new anti-depressant medication. She refused my offer of finding her a psychiatrist. It’s either me treating her depression or nothing at all.

After I put her on a medication, she came back to see me. “That didn’t help”, she said. And she went on to say how much her life has been impacted by depression. She would lie down in her bed and sob uncontrollably for no particular reasons. “I don’t think you can help me. No one can help me. I’m not heard. My husband loves me dearly, but he minimizes my worries. My children do the same. No one listens to me”.

Once again, I offered her a consultation with a psychiatrist or a psychologist or at least a counselor’s services – it was promptly refused. I was lost for words, and I admitted my inadequacy to help her. “I don’t know what to do with you, Wilma.”

Suddenly, I had an idea – why not sent her to her church pastor. “Can you talk to your pastor”? Upon hearing that, she started laughing uncontrollably. I was confused. “Why are you laughing? I don’t understand it”.

“I’m laughing because my pastor is my husband himself”.

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Shell-shock

He was a United States Navy veteran of the World War II. He served in the Pacific when he was 17 years old. Still looking every bit a veteran, he said, “I don’t believe in this thing called PTSD”. He was referring to the Post Traumatic Stress Disorder that affected warriors who have seen the dreadful horrors of battle. He went on to explain his thoughts. “I had a cousin who was in the Normandy landing. He was one of only 25 people who survived the Battle of Bastogne in 1944. He survived five near-death experiences with gun shots to come back from the terrors of WWII. I still remember when he came back, if a lad went and touched his shoulder from behind, he would immediately raise his arms to ward off an attack.” He went on to speak from his pristine recollection of a tale he must have narrated hundreds of times.

“We used to call it shell-shock. There were really very few people who were shell-shocked. And, it took five near-death experiences through the Battle of Bastogne to get shell-shocked”.

Quite lucidly, he taught me what being shell-shocked means. I left the room wondering if I am shell-shocked from fighting cancer in the rough battlefield.

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Prunes

Barb is 86 years old. She loves Dr. Oz, a medical doctor who hosts a very popular talk show. “Why do you like him?” I asked her. “Don’t you know that everything he says is backed by advertisement revenue?”

“Oh I love him, although my daughter thinks he is full of prunes.”

I came out of the room wondering what it means and I turned to the expert – Dr. Google. According to Dr. G, ‘full of prunes’ means peppy, energetic, and lively.’ But my staff told me that’s not what she meant, and I dug further into Dr. G’s expertise.

According to old people-talk, ‘full of prunes’ means full of stuff that comes out when you take a lot of prunes. I burst out laughing. Barb’s daughter was a cent percent correct. Dr. Oz is full of prunes – not the former definition, but the latter older version of the phrase.

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Foreign

They came to see me, but it seemed as though they were anxious about something. My nurse asked them what it was that made them seem jittery while they awaited my turn to visit with them. One of them mustered the courage to ask my nurse. “Is he foreign?” Seeing my nurse’s perplexed look, they ventured to explain their question. “Well, we are worried whether we will be able to understand him”.

Upon hearing their concern, and knowing that they were a fun loving people, I decided to play a simple joke on them. I went into the room, and just spoke a few words in Malayalam, my own language. And, I saw their jaws dropped in disbelief. That was my icebreaker for them. It worked just fine.

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Be practical

I spent at least five minutes of my time in clinic explaining the various adverse effects of chemotherapy to Mr. Webster. He had metastatic colon cancer, which is an incurable disease. He patiently listened to my monologue about risk for allergic reactions, anaphylaxis, and even secondary cancer and death, with a gentle but lackadaisical smile on his face. Once I took a breather from the consent discussion, he gestured that he had something to say.

“Doc, you do what you have to do. I’m fully aware that this cancer will kill me if the medicine doesn’t”.

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Sister love

“What kind of cancer do I have, and how many more months have I got?” Our clinic visit started rather abruptly. She seemed to be a feisty woman, I thought. Martha was 66 years old, and had a cherubic smile.  She kept deflecting everything with a rather untimely joke. I started wondering if this was denial, but that was not the case. She was speaking with great confidence, clarity and courage.  

“I don’t want chemotherapy. Let me go.” After hearing all that I had to say, she said those words. Suddenly, all of that courage just dissipated away as she started sobbing. “I don’t want my sissy to know. I don’t know how she’ll handle this news”.

I asked her if she could bring her sister with her for the next clinic visit.

“Bring my sister? She is 6 years older than me and lives a thousand miles away. She is a tiny, cute old lady. When we were growing up, all of us would get a spanking from our mum if we ever made her cry”.

I listened silently.

“I don’t want to make her cry”, she said as she continued to wipe away her tears. 

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Cars

Often patients surprise me with their questions. This gentleman with cancer of the intestine had only one question for me – “what kind of cars do you own doc?”

I replied to him, “a Toyota and a Honda, both second-hand”.

He smiled an affirmative, self-congratulatory smile and said, “I’d have guessed it. You fit my profile on someone who’d buy that, and that too a cheaper one.”

Apparently, he was someone who was so fascinated with vehicles that he has at least a dozen of them – cars, corvettes, Harley Davidson bikes and pick-up trucks. His wife mentioned that he spends an entire day, through the week, working on his vehicles. This hobby started from his time spent shadowing his dad who had a similar passion.

Before walking out of my clinic with the follow-up plans in his hands, he turned back and added, “you are a down-to-earth guy”.

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Hysterical

She was my most anxious patient ever. An unfortunate woman of 55 years, she already had two cancers, and now had a third one. We had spent countless hours discussing the various options available, and the prognosis. Our first visit after she was diagnosed with the third cancer was shrouded in tension. As soon as I met her, I gently leaned towards and reassured her that she is not going to die quickly, and that I would take care of her cancer. Before even I could finish that sentence, she jumped to her knees on to me, gripped me with a bear hug and started sobbing on my shoulders. It went on for a few minutes. All I could do was to tap her gently on her back and console her. That was all it took for her to release her pent up tears.

But today’s visit was different. She was alone. Her anxious, but loving husband hadn’t joined her. She confided in me quietly. “Doctor Mathew, I’m worried about my husband. I can manage the stress. But I don’t think he can. He is making me eat all sorts of supplements hoping that it will cure me. He is hysterical.”

“What if you decline those alternative supplements?” I asked her.

“He would kill himself. I wouldn’t do that.”

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Empathy

They had wanted to see me as a family – the mother, who is in her 50s, the father who also happens to be a physician himself, and three daughters in their early 20s. Bella was fighting cancer of the gall bladder that had advanced into the liver, and she had gone through every single bit of therapies available, both established and experimental. I had a fair bit of expectation even before I walked into the room that the most I can offer is palliation of her symptoms.  But the problem was that I had just taken on a huge panel of patients when a colleague relocated to another city. And, she was one of them. It is always challenging for the patient and for her doctor when you have to initiate the care towards the end-of-life. I have to jump into tough conversations without having established a rapport or trust with the patient. But, this time, I was in for a surprise. She disarmed me with her first few words.

“I feel bad for you. You are put in such a difficult position with my care”, Bella said as her loving family distressingly watched.

I have often seen patients express empathy for the family members, a dearly beloved spouse or caring children. That was the first moment I heard a dying patient express empathy for the physician amidst her own suffering. I was getting schooled in the highest expression of empathy by a woman who was living her last few weeks.

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Young

Rob was a 62 year old with cancer of the large intestine. Fortunately, he did not have stage IV disease. However, he needed chemotherapy to reduce his risk for disease relapse. He was accompanied that day by a young teen girl. I made a mistake that we are taught in medical school never to make. Never assume the relationship between the patient and his bystander – always ask.

“You brought your grandkid along?” I asked.

“She’s my youngest child”, he replied.

“Oh. I am sorry. How old are you, if I may ask?”

“18”, she replied with a confident smile.

“Doc, I’m so happy I had her when I was older. She stays with me and takes care of me now.”

She’s young, but precious.

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New

I had just stepped into my office when the phone rang. Unfortunately, it went into my voicemail just before I could pick it up. On the other side of the receiver, I could hear the weak voice of a woman. “Hi, this is Beth, Tom Donahue’s wife. He has pancreatic cancer and is getting chemotherapy under your care. Can you please call me when you have a moment? I would like to talk to you.”

I called her right back. Beth picked up the phone and upon hearing that it was me, she started sobbing. “Dr. Mathew, I have never seen him cry. I’m not used to this new Tom. He’s so different now.”

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No strangers

A good doctor will aim to know the person, not just the patient. Sometimes a random comment from a family member may help more than direct conversations with the patient. It was one such day. I heard a comment about Ronald that lingered on in my mind for a long time, and helped me understand him as a person.

“Doc, he has never met a stranger in his life”.

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Loneliness

She was a sweet patient of mine. Always cheerful, and always appreciative of whatever I did. But today, I had to step in to the room to break the bad news. Her cancer had progressed. She had one of the most aggressive malignancies that usually results in death of over 95% of people within 3 years. She knew what she was  staring at. But certainly, she didn't know it was coming so fast at her. 

She was alone in the room like several of my patients who come to the doctor visits all by themselves. With tearful eyes, she accepted the bad news. "Dr. Mathew, cancer is a lonely sickness." 

I was struck by what she told me. I must have treated thousands of persons suffering from cancer. No one has described the disease in such words. Her voice resounded in my ears for an entire week. Indeed, cancer is a lonely sickness. At the end of the day, the patient is all alone as they struggle to ward off bad thoughts and harrowing symptoms. Although I always tell my patients that I am there by their side to walk with them in their suffering, I recognize that they are actually walking a lonely walk. 

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House-broken

Two elderly women past their 80's came to see me in clinic. One of them was my former partners patient. She just wanted me to check her again. There was actually no reason for her to come to see an oncologist this far out from her original cancer. Nevertheless, they brought great joy to me. Both of them were best friends. They have been together since primary school and live nearby too. Both left their spouses at home and decided to make this fun ride to an oncologists clinic on a dull Monday. I suspected that they had other plans for the afternoon - like maybe a nice meal together, and some shopping at the mall. 

Casually, I asked my patient if she was able to do her house chores. "I have house-broken my husband. He does it all", she replied with a glee in her eyes and voice. "She has not managed to house-break her husband yet", she pointed at her friend, to the other parties' embarrassment. Even after they walked out of my clinic room, I could hear their laughter as they taunted and teased each other. 

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Not now

Mildew, an 82 year old woman, and her son were waiting for almost an hour in my clinic as I was quite busy with discussing treatment plan with another patient who needed my time and presence. I walked into the room and promptly apologized for my delay. They didn’t seem to mind it though. I noticed that Mildred was looking quite fine. If I had seen her outside of my clinic, I would not have guessed that she was just diagnosed with pancreatic cancer. She did not have any symptoms at that time. A randomly done CT scan showed a large mass in the tail of pancreas, a long slender organ deep inside the abdomen. It is a diagnosis that comes with very poor prognosis. I discussed all of the treatment options with her. I mentioned that not doing active treatment in the form of chemotherapy, surgery or radiation is also an acceptable option for her.

After listening to my carefully worded opinion, she smiled. “My middle name is procrastination. I’d like to not do anything now. If I have any symptoms, we can talk about options at that time”, she said quite confidently. Her son, a middle-aged man, laughed on hearing that. He quickly said, “I never knew that when I was growing up. I wasn’t allowed to procrastinate anything at all”.

Since then, I started calling her Mildew Procrastination Thomas. And, she’d have a wholehearted laugh upon hearing her new name.

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70-80 years

Fred was 76 years old when he was diagnosed with a cancer in the biliary tract, an aggressive malignancy. He came with an entire entourage. I walked into the room and was quite surprised to see the elderly gentleman sitting quite self-assuredly. It seemed as though he was oblivious to the fact that he has only few months left. As soon as I sat down to talk to him, he told me, “Dr. Mathew, I have lived the years the Bible tells me a man will live, 70-80 years. I am happy and content. Will you help me be comfortable? Will you be my doctor till my last breath?” I just sat there astounded by what I just heard, and replied to him in the affirmative. “Yes”, I spoke reassuringly.

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Compassionate release

Philip Perta was brought to me from the state prison. He had two armed guards with him, and his legs were in chains. He was in end-stage of pancreatic cancer. His guards stood still as he spoke to me with complete conviction. As it stood, he was in prison now for several years and the rest of his family was in Florida. He just had one wish. He wanted to spend his last days with them. I fulfilled his wish, and signed a form to request for ‘compassionate release’ for the prisoner. With one swift stroke of my pen, I became his liberator. But truly, it was the disease that finally liberated him to his freedom.

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Live or Die Dying

My nurse once narrated an experience that struck her during her early years in oncology nursing. She was shadowing a much older and senior nurse around. One day, they encountered a patient who was quite depressed. The diagnosis of cancer and the awareness that death wasn’t too far away had created a sense of gloom and doom in him. As she was accessing the chemo infusion port, the senior nurse spoke to the patient a few words of wisdom. “You can either live while you are dying or die while you are dying.” It is easier said than done, although there is truth in those words.

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Not Just This 

Dana has been my patient for three years now. We have enjoyed a great friendship beyond just being a doctor. This last time when I saw her in clinic, she appeared very sad. I asked her what’s on her mind. I assumed it was the uncertainty of cancer. But she had other things in mind. 

“I’m not just fighting this. My husband was just arrested for a crime and he is now incarcerated. I want to keep our marriage together. We tried to plead before the judge to give an exception to prison or shorter sentence given my disease, which he declined citing the seriousness of the crime”. 

As she was narrating the nature of the crime involved, tears started dropping down from her eyes. She looked at me embarrassed. 

I was reminded that sometimes, cancer is the least of the problems that my patients face. 

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Live-r

Milli was in my clinic that day to discuss her scan results. She was on an effective therapy for her cancer and she was feeling just fine. There was no reason for her to be concerned about the results of the scans. But, it showed that the cancer had stopped responding to the treatment and had started growing in the liver. 

I explained to her that I must now start chemotherapy because liver is a vital organ and I have to contain the cancer quickly or else this will turn out to be life threatening. 

“I know Dr Mathew. That’s why it’s called the Liver. You can’t live without it”, she replied. 

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F.E.A.R

Charles’ brother-in-law, Todd, was a pleasant older gentleman. He always accompanied Charles during his visit with me on the days he had scans done. “Charles would come back home after the visit and say everything was fine. That’s why I have to come and hear it for myself”. He smiled and explained the reason why he came every three months with Charles. 

But this time, the scans showed that the cancer had stopped responding to treatment. Charles was disappointed. Todd put on his usual confident smile and reassured Charles and myself. “Don’t fear. It is False Evidence Appearing as Real. That’s what it is. F.E.A.R. Let’s go forward with no fear.”

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Questions

After explaining the treatment plan to Mr Michael and his wife in extensive detail, I proceeded the same manner as I do with every patient. I ask them, “so, what questions do you have?” I usually get a “none” or “we have a lot of questions”. 

This time, I was truly surprised by the response. “Why do you like your job?”, he asked. 

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Murderers

“I don’t like hospice consulted”. “Why?”, I asked. “Because, they are murderers.” After some hand holding, she finally agreed to consult hospice.