The Barbet's Lullaby
The Barbet's Lullaby
"My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics."
"Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated."
-- Stephen J. Gould, The Median Isn't the Message
It is now five months since I stepped out of Bombay. Almost to the day. I can't remember the last time I was in one place for so long. One can count and recount almost every visit outside of the home that was not to a hospital. If the monotony has been insufferable, the breaks have been more so. I'm not sure which I prefer, to hide in the daily routines or to run from the unforeseen experiences. I have come to trust the stability of things. Like the constant, unchanging view of the rain tree outside my window. And, the unpredictable but daily, metronomic call of the coppersmith barbet, that became my diurnal lullaby.
Shortly after my twenty sixth birthday, I got diagnosed with cancer. Hodgkin's lymphoma to be precise. The diagnosis happened just days before I was to start my Masters' dissertation fieldwork. Everything was in place - equipment had been procured, permits from the Forest Department were in hand, grant money had been transferred to my account, and I had successfully defended my thesis proposal ... I had spent the last year and half getting ready for this moment. I had wonderful advisors who were encouraging and just as excited as I was about the project. I even had anti-Rabies vaccination shots and an anti-Tetanus vaccine, just to be on the safe side. I was definitely not prepared for cancer. I remember thinking, "This cannot be happening to me!"
On retrospection, all the indications were there. I had been feeling inordinately tired, would feel feverish frequently, and was falling sick more often than usual, for about a year before the diagnosis. I would feel lethargic and found it difficult to do things I would normally breeze through. I found trivial things to be exhausting - like climbing stairs or jogging or even walking. I would fall asleep early at night but still find it difficult to wake up in the morning. I would get through each day with copious cups of black coffee. At seven cups a day at one point, I tried kicking caffeine and even thought that the tiredness was a withdrawal symptom. I eventually decided it was because of hectic travel on my part and left it at that.
I also happened to discover a lump in my neck which should have set the alarm bells tolling, but did not. I thought it was simply an inflamed lymph node due to some infection, since I had a severe bout of a mysterious viral infection around the time I discovered it. I have never come across a person in their twenties with cancer and there was no family history of cancer. Besides, I was too busy enjoying life for the thought to cross my mind. It just didn't seem possible.
After a wonderful holiday in the Himalayan foothills, just before leaving for my field site, my spouse had to be taken to the hospital, having collapsed at the airport with back pain. It was then that I decided to get the painless lump checked, for what it's worth. This was at the IIT Bombay hospital. I remember taking care of my spouse, and additionally driving myself to the meet the doctors, for scans and blood tests, and to buy medicines. All this while feeling extremely tired, sleepy and unwell. I was put on antibiotics and was warned that an excisional biopsy may be needed if there was no response to the antibiotics. The doctors were not ready to divulge much information on what the lump could mean.
This was just before the Diwali holidays. I had planned to visit my family in Chennai, stop at Bangalore to meet my advisors and collect some equipment, and return to Mumbai, before driving down to my field site in Kutch. I was in Chennai when I realized the lump was not responding to the antibiotics. I decided to get a second opinion from the family doctor, who assured me that it was 'nothing to worry about', and scared my mom with some melodrama. This resulted in dividing me and my family on the subject of the biopsy, and lead to a huge argument just before I left for Bangalore. That train journey turned out to be a sleepless one for me. For better or for worse, I decided the lump had to be either TB or some tumor. Benign or malignant, only the biopsy could tell.
I decided to go ahead with the biopsy at the IIT Bombay hospital - my rationale was that, if it turned out to be 'nothing to worry about', then I could proceed with life unhindered. If not, and if the lump was something to worry about, what if something happened to me when I am in Kutch, alone and far from civilization, and where medical facilities were non-existent or hard to reach? This 'what if' saved my life.
I distinctly remember seeing the pathology report after the excisional biopsy. Hodgkin's Lymphoma. It had the diagnosis in bold font and unparsable medicalese following that. Terms that I would come to know very well over the next few months but had no clue about then. The days following the surgery (my first ever) were slightly difficult, but nothing in comparison to the ensuing months. I don't deal well with uncertainty and was on tenterhooks until the day of collecting the biopsy report. I shed some tears right after getting the report but a few minutes later I was calm and composed. It felt surreal but I felt like things were under control.
I started planning for the days to come. Primary and crucial to this was knowing about the disease. I had already interacted with a number of doctors, and decided that they (the global community of doctors, great and small) may be qualified medical practioners, but I knew my body best, definitely better than they ever could. I started scouring journals and the internet for information on Hodgkin's lymphoma. This was to be characteristically true throughout my treatment. Some doctors would tell me blatantly to not read up, but that was not an option for me. The oncologists are not all-knowing, and I did not always have access to someone who could answer my questions. The internet was my only stable friend. I have to agree with Gould on this one, "Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all."
The next step was to identify where I wanted to be treated. After some discussions and taking various factors into consideration, I decided to go with the Tata Memorial Hospital (TMH), here in Bombay. There were pros and cons to this. TMH is a city in itself, but a well-oiled machine too. I like two aspects in particular. (1) Things work almost algorithmically when there. (2) It was paper-less, had a wonderful smart-card system, and my medical records were online. It would be utter mayhem if not, considering the crowds.
The first few visits were lessons in humility. To meet the oncologist assigned to you (or someone from zir team) for ten minutes or less would take a whole day's wait. Moreover, the adult hematology department is right next door to the pediatric oncology department. I would invariably feel less sorry for myself when watching babies with tubes through their nostrils or bandaged body parts. At least initially. As the treatment progressed, I became increasingly self-absorbed or in too much pain to care about anything/anybody else. The doctors I interacted with were amazing individuals and I was lucky to get the treatment I did.
After meeting my oncologist for the first time, I had to get the cancer 'staged'. A PET scan indicated that mine was a stage 2, since multiple lymph nodes (and/or organs) were affected on the same side of the diaphragm (above it, in my case). Even though I had shown some symptoms such as sweating at night (commonly called "night sweats") and fever, there was no weight loss. Also, considering my age and general health, the oncologists decided it was stage 2A. My treatment regimen was to involve eight sessions (a session every two weeks) of ABVD as chemotherapy and this was to be followed by 14 fractions (this was determined later) of radiation therapy, with another PET scan to determine how I have responded to the treatment.
My first chemotherapy session was on December 1st, 2013. This was hardly ten days after receiving my biopsy results, two weeks since my surgery, and a month since I started antibiotics. In a month, my life had turned upside down. In the interim, I calmly went about setting things in order - primarily, getting the house spotless, clean, and comfortable, knowing fully well that I would be stuck here for the next few months.
I've had a range of side-effects due to the chemotherapy. The oncologists had warned me about some of the short-term ones (such as the nausea, hair loss and risk of infection) and had chosen to not do so about certain others (such as the intense pain, thrombophlebitis, fatigue and depression). I did read up a lot and knew some of the expected side-effects (a drop in neutrophil counts and why that might be dangerous) while trying to read up on the fly about some issues I was having (such as the mysterious pigmentation patch on the arm, the pain, the tingling in fingers, the burning sensation, watery or dry eyes, constipation, pause in menstruation and so on). Some of the effects were easy to handle and some were not.
I would sometimes wonder if the reactions were imagined or psychological. I decided they were all too real. It may be difficult to understand how tired or lethargic I was, and one would have to take my word for it. But mostly the side effects had visible manifestations - burnt veins in hands, test reports, clumps of hair all over the house ...
You will have to take my word other things too - how my tastes changed. What was sans salt one day was too salty the next. My tolerance for spicy food plummeted. If I could not stand cheese after one session, I craved it after the next. I could not stand water or any fluids for a few weeks, but survived on fluids and baby food the next. I found it difficult to chew and bite food, and preferred something I could swallow on most days, but enjoyed something crispy or crunchy every so often. What I liked one day, could not stand the sight of on another. One week in particular, I survived purely on mashed potato twice a day and nothing else. Flavored yoghurt, sweets, and sorbets were my only solace from the burning sensation. Gatorade, coconut water and some juices provided tremendous relief frequently - once I was able to stomach fluids.
After my second chemo, my hair started coming away in clumps, and when people had to wade through the sea of hair at home, I decided enough was enough. It was the mother of all bad hair days! We had to wait for my blood test results before going ahead with tonsuring me, since my neutrophil counts were dangerously low and a cut while shaving would have guaranteed infection. Thankfully, they had picked up, and we went ahead with the plan. It may sound silly now, but I was worried I may end up looking like Gollum from the Lord of the Rings. I was truly petrified at the thought and felt relieved after getting it tonsured. I was quite self-conscious the first few days but it made life easier. I prefer wearing a bandana or scarf when going out these days, along with a Buff head wrap that a friend recommended and some cousins gifted. As it turned out, the hair loss was one of the least painful of side-effects.
After my growth factor injections, for severe neutropenia, I would be ravenous. But for most part, I would not have much of an appetite. I had not heard of neutropenia until I had to deal with it. I have picked up a great deal of medicalese since being diagnosed, whether I like it or not. Another lesson was to listen to my body closely and trust my decisions.
I have been moderately neutropenic through the treatment but severely so twice in this time, which is considered dangerously low, and had febrile neutropenia (showed signs of an infection) once. This was after my fifth chemo session and I had to be rushed to the emergency room for a mild fever (from an ear infection) for intravenous treatment with antibiotics. Basically, the neutrophils, which comprise about 70% of the WBC, are so few that my body cannot fight even a tiny infection without external interference.
I don't think being dagnosed with cancer was life-changing for me. No, that came later. During and after my fifth chemo session to be precise. Something snapped then that I have not be able to extricate myself from. I was fairly cheerful and optimistic right until then - I didn't mind my new bald look after the hair fall, I was not bogged down with the nausea and vomiting, took the pain in my stride, and was trudging along fairly well considering the circumstances, until then. I even had a sense of humor. Once one is broken emotionally, recovery becomes so much harder.
Something happened that changed me as a person after that fifth session. I don't know what. I started dreading each hospital visit. I started dreading being poked even for a blood test. I have been jabbed so many times for blood tests, IV, injections, vaccines, and even the chemo itself, in life, that I was a veteran who never flinched. Until then. I started crying at each blood test. I had anticipatory vomiting before most subsequent hospital visits, especially if there was to be a chemo session. Seemingly innocuous things, like the red color and characteristic (from the drugs) smell of my urine, bothered me no end. I started dreading the chemo. I started hating the treatment. I no longer wanted it. It was too hard on me. The pain was becoming unbearable. I was unable to use my hands with the pain. I was dreading the pain and nausea. And the burning sensation. And that my counts may drop. And that I could get an infection. And that I will be poked again - for blood tests, for antibiotics, for the PET and CT scans, for the growth factor injections, for the chemo. And this time, since the doctors agreed that my peripheral veins were so damaged and my arms in such pain, they were going for my jugular! The EJV cannulation was done at the ICU by a gentle doctor who was sympathetic and friendly. I dreaded it nonetheless.
I started hating the hospital, the interminable waits, the rude nurses. I started hating that a loved one was sometimes inconsiderate or unsympathetic. I started feeling that I was not a priority, that I did not matter. I started hating that everyone else was leading a normal life, doing what they love, having fun, happy, when I was in a world of pain, wallowing in my own misery. I even contemplated 'going off the grid', a classic case of being affected by the antisocial network. I know it is not reasonable, but that is how I felt.
In addition, I have hardly stepped out of the house, barring eating out a few times (with the doctor's permission, making sure the cutlery was sterile, and the food fully cooked), a movie screening on campus, and occasional shopping (avoiding crowds). It felt like every instance of leaving the house was to go to the hospital. For someone who likes being footloose, travelling, and eating out, being cooped up at home for extended periods of time is not fun. I have had visitors and look forward to visits, generally - unless it was a particularly bad day. I like talking to friends and many have called to check, or sent letters, or emails, or even gifts. I would look forward to my mom's visits and appreciate having my dad, sister, aunt, grandma, in-laws, and others care for me. That they took turns helped break the monotony I had fallen into. However, being dependent on someone else to go out or for food or other simple things I didn't have to worry about earlier was hard as well.
To add to all this, I was devastated with the timing. I had finally found exactly what I wanted to do in life, and was doing well at it. Cancer hit me just before leaving for the field for my thesis fieldwork, after all the arrangements were in place. I was on a roll and this speedbreaker threw me off my rocker. I had my life chalked out - I had my plans for the next two years, next five years ... Best laid plans went down the drain. Or that is how things would seem at times.
I was unable to focus on anything. Even reading was hard. I would try to sleep as much as I could, since being asleep helped mask the pain, nausea and general discomfort. I would watch TV or just lie in bed gazing out of the window. Or occasionally paint, go for a short walk, or practise the piano, if I felt upto it. A cousin thoughtfully picked up art supplies for me and gifted them on her first visit post the diagnosis, in addition to swinging by for some art therapy every so often. The first few weeks were quite productive, especially on the arts front, but stopped after a while.
The doctors mentioned some side effects, I read up on some. Nobody can predict the side-effects I was going to have after chemotherapy - I could have just one, I could have all of them, I could have some combination, I could have none, I could have new ones that no one expected. I had some combination of expected side effects and some unexpected ones that even stumped the doctors - like the patch on the hand, or a severe reaction to the chemo unlike anything they have seen so far. This was simply on the short term spectrum.
Similarly, how the chemo can affect me in the long term is anybody's guess. One of the medicines (Bleomycin) already affected my lungs, leading to a 13% reduction in lung function. This resulted in that particular drug being stopped and replaced with an oral chemo capsule (Etoposide).
I did read Stephen J. Gould's essay, The Median Isn't the Message, from his first cancer. As an ecologist, that helped a little on perspective. Although, I am not sure what that number (13%) means in terms of how it will affect my lifestyle and do not want to speculate, but decided to focus on the good news that it could get better. Similarly, I was warned that another drug (Adriamycin) may affect my heart. When, how, nobody can tell me.
Different people react differently to the treatment. Some folks just cruise through and even work throughout chemotherapy. Some people handle the pain with dignity and grace. I do not happen to be among those people. It also so happens that what I propose to do in life is far from a desk job. I now have start at the bottom to get fit since I can barely walk around the block without being utterly exhausted.
Standing on the threshold of my radiation therapy course (at Hiranandani Hospital), I have the same questions. There are a whole bunch of side effects, short and long term, which of them am I likely to experience? If my current luck lasts, I could experience all of them - from pain swallowing and eating, to heart disease, thyroid problems, secondary cancers (leukemia, breast cancer, lung cancer, non-Hodgkin's lymphoma), or a recurrence of Hodgkin's lymphoma. Unfortunately, the 'ignorance is bliss' route is not an option for me.
All I have are statistics to help me understand and more visits to the doctors. Some studies suggest that if I don't get leukemia due to my particular chemo or radiotherapy in 15 years, I probabilistically have the same chance as you do (1 , 2, 3, 4). Maybe I can heave a sigh of relief 15 years down the line. One study says, a woman under 30 years of age who has been treated for Hodgkin's lymphoma is 19 times more like to get breast cancer. Multiple others put me in the category of 'maximum risk' of breast cancer (5, 6, 7, 8). My oncologists don't disagree with the studies. They can't. My doctors (and some studies) say that there is a 10-20% chance of the lymphoma recurring in the next five years. That sounds quite high in this case, as opposed to a 10-20% discount when shopping which is abysmally low enough to warrant a haggle. But, if chemotherapy and radiotherapy are so harmful, why are they such popular treatment regimens for cancer? Because for early stage cancers (like my stage 2), the benefits of the treatment outweigh the risks and side-effects. Apparently. They delay death at any rate. Inordinate pain right now, for the gain of delaying a painful death.
I think I can deal with knowing I have only a year, three years, five years to live. I cannot deal with the uncertainty of disease and more cancer. The possibility of being hit once again right after I've picked up the pieces for this one seems too much to handle. I don't want to go through chemo again, and I doubt if radiation is going to be any more pleasant. The only positive for me is that medicine and technology could be better and treatment may be easier if this happens again. I can only hope that it won't be as painful next time around, if at all.
I am planning to return to NCBS as soon as I can. Some progress on the work front could help me a bit. As will a change of scene, having not left Bombay in months, and seeing other faces. Moreover, it is easy for me to fall into a schedule when there - eating and sleeping at regular times since I can just eat at the canteen or outside, formulating and sticking to a timetable. I may also plan a holiday or trip somewhere, which may help rejuvenate me. I think I deserve a holiday and some indulgences. Let's see.
Until then, I still have a view of the rain tree and the barbet's lullaby to keep me company.
If you or someone you know had similar experiences, agree or disagree with anything I have said here, or would like to reach out to me, feel free to send an email to
PS - I can offer only my gratitude to every single person who supported me, in ways big and small, in the last few months. Friends, family, colleagues, mentors, medicos ... you know who you are! You made the ordeal tolerable and brought enormous cheer at a time when everything was bleak. Mom, dad, and sis - I would not be who I am without you. I know you tried your best to take away the pain. I have no words to thank the one person who has been with me throughout the journey, through the good days and the bad ones, and frequently determining the moods my days would take, charting the roads the journey took me on. I wouldn't be here if not for you.
I have received a LOT of questions from different people, after each visit to the oncologist and otherwise, about the cancer, the side-effects I was/am having, what my plans are, why I'm behaving in a certain manner, why I'm experiencing certain things ... I found some links that I have listed below that may help answer those questions much better than I can.
(Some of the publications I looked at can be found in the References listed in this article)