Mahanth is Editor of usindiamonitor

New to this story? For context you can find Chapter 1 here and Chapter 2 here.

We should start with some good news. The many long infusions of Romidepsin into my veins that started in April are doing a good job of beating down the lymphoma that riddles the body, and reducing the pain, skin damage and itching that come with my variant of lymphoma. I could not be happier about that. Thank goodness for this progress. The bad news is the strong side effects. These have honestly been the worst part of the journey so far, the biggest challenge to overcome. Side effects have defined what has made this into a worthy battle. Powering through the side effects are pretty much the whole game for now.

One particular side effect stands out unexpectedly as the worst by far. And as part of my healing process, I will chronicle this specific complication here, in hopes that writing about it will help me deal with it better. It’s not the nausea, vomiting, fatigue, weakness, cramps, or diarrhea that might pop up unexpectedly and at inopportune times that have fazed me the most. One morning at work I threw up all over my office, no time to make it the short distance to the bathroom. Fortunately I was alone at the time. I shut the door, cleaned up, and life goes on. I’ve come to find these symptoms to be unpleasant but manageable, with the liberal use of modern medications. I have powered through the resulting brain fog to carry on with living an independent life, if more limited than I’d prefer. If I had been told to prepare for this symptom in advance, it would have seemed like a piece of cake to the pre-April 2023 version of me determined to solve all problems using an iron mindset. How wrong I would have been.

It’s the way my sense of taste has been dramatically altered that has by far become the most frustrating aspect of my existence. This came as a surprise way out of left field. I am not joking, and wish I was. Perhaps it’s made worse by the disproportionate love of food and cooking that animated my life pre-lymphoma, which have been somewhat ruined. I am aware this does not apply to everyone, as some folks I know eat just in order to fill the belly and move on to other things, and I have been reduced to this myself. The new state of affairs has made the simple act of eating food a constant nightmare and source of anxiety. My appetite itself is okay, but I now spend a great deal of time preparing myself mentally to eat the next meal, often forcing myself unwillingly to put food in my mouth, always having to push through with this unending source of foreboding and anxiety on my back. Just like when I broke my arm in 2017, it’s impossible to understand how much you take your limbs functioning normally for granted in daily life- or the sense of taste provided by our nose and tongue for granted until their function has been cruelly altered. This all feels so random to me even months later.

Degradation of flavor is not an unusual side effect, though some don’t experience it at all, some cases are mild, and others have it bad like I do. Meanwhile others will experience worse side effects than I have in other areas. Every person’s body chemistry is different. It has made me deeply appreciate the sense of taste like never before, and feel great sadness for those who have lost it for various reasons.

Early on after my infusions of Romidepsin started, I made for myself a big pot of my very favorite dish since childhood, native to the South Canara region of India, a fusion with Western culture’s most universal staple, called bread upma. This is a simple, quick and fragrant brunch affair involving cubes of bread tossed in a hot pan with butter, coconut oil, mustard seeds, urid dal, grated coconut, fresh green chilies, dried red chilis, curry leaves, asfoetida, water, and sugar. Those of you without connection to South Canara will never have come across it. I learned how to cook one of the many variants of this dish by watching my mother make it while growing up. Of course, I believe my recipe is the best in the world too. Like the hundreds of previous times I had ever made bread upma, at least once every two weeks since my college days in 1999, my mouth was watering in anticipation while the fragrances wafted through my kitchen. I could make it perfectly balancing the ingredient ratios and timing in my sleep. Tragically, when I sat down to eat it, it tasted like vomit. I nipped at it again and again to make sure. Almost in tears, I threw the whole fresh pot of food in the trash bin in disgust and anger- and your correspondent is a person who never, ever used to waste food before all this happened. I haven’t dared to try bread upma since April, and something has been missing in my life.

As I discovered, the taste of certain common staples and favorites became unbearable. A significant amount of experimentation ensued to research what I could and couldn’t tolerate- for in my new reality, toleration was the very best I could hope for with any cooked food under the sun. Doctors, nutritionists, and the Internet encouraged relentless experimentation. Breads, pastas, tomatoes and tomato derivatives like canned tomatoes, pasta sauce, pizza sauce, or ketchup became inedible. Meat could taste downright rancid. For example, I got a Shake Shack burger, the one I consider the King among all burgers, and had to throw up as the patty tasted like horse manure. Nutrela, a delicious soy based Indian product I always keep stocked in my pantry, became inedible. I ordered macaroni and cheese at a restaurant, which looked rich, scrumptious and melty, and nearly gagged and held back puke after being jolted out of my chair at the table, for it tasted like pure unadulterated vomit. On a trip to Chicago with my parents to attend a lymphoma conference, after days of anticipation I excitedly walked a number of blocks to carry out a hot deep dish pie from Lou Malnatti’s, among my favorite Chicago pizza chains- the store smelled heavenly- but back at our hotel room I could not eat more than a slice without gagging due to the thick tomato sauce I always used to love tasting offensive. It was not among my better birthday celebrations. On vacation in San Francisco I sought out a legendary 100-year old restaurant for their Italian-American invention of cioppino– and was forced to waste the pricey dish after a few unhappy bites.

I got a scoop of my favorite ice cream at the legendary Madison eatery Chocolate Shoppe- and only finished because I had to power through it. What fresh Hell was this, that I had to power through a scoop of luscious ice cream usually bursting with flavor for most human beings from chocolate, caramel and nuts, expertly prepared in the Dairy State?

While my mother was staying over she would make items that in a previous life would have made me drool like a dog- including the unique, buttery South Indian delicacy, prawn ghee roast. Folks in America: this rich entree is unlike anything you’ve tried in an Indian restaurant.

On that occasion the smell alone of it being prepared, wafting through my house, nearly ruined my whole evening- as would many other familiar cooking smells such as the frying of onions, garlic, or Indian spices which used to be what I lived for. On and on this horror show of twisted smell and flavor went. Being with other people who could not believe how bad my struggles were during meals became a constant source of frustration for me and for them, most of all my parents who put effort in to make things that were healthy. This made me feel bad and not want my mother to cook for me at all anymore for everyone’s sake. Additionally the joy and desire for me to cook with my altered taste buds are pretty much gone in a cruel twist. You can witness my insane love of cooking- and perhaps insanity- in this old blog post from my NYC days. Now I finally understood for the first time, the concept of many people I know finding cooking to be a chore, rather than a pleasure.

Fortunately, I found some foods to be tolerable even if they did not taste exactly the same as before, many of them healthy. Fresh fruit like bananas, orange, pineapple, pears, and mango are tolerable. Rice and rice derivatives are tolerable. Potato salad, and ingredients like mustard and mayonnaise were edible. Some fresh vegetables, like cucumbers and carrots, were fine. Others like eggplant tasted just wrong. Eggs, nuts, seafood, and protein shakes are okay, if not perfect, so I am able to woof down some protein. This is a blessing. Bacon, yogurt and lentils, thank the lord, taste exactly the same as before and these can enhance my protein intake.

Despite it all, any cooked food item feels like a crap shoot, not like the fun kind in a casino. It is not always so simple as to be able to say that some foods work and some don’t. The first time I ordered the coconut milk based tom kha gai soup from a local Thai joint, it tasted fine, a small victory that excited me. I made it for myself another time, and it tasted fine. The next time I got the same thing a few weeks later from the same Thai restaurant, which looked and smelled exactly the same, I was unable to eat even a second bite as it tasted spoiled, though I knew it was not. How capricious can a side effect be!

I’m engaged in a food war, playing out daily. Alarmingly, I have not looked forward to eating a thing since April. I have learned to power through, to hold my nose and eat if necessary, but not feeling like eating has been grating. It’s a foreign concept that still does not compute in my brain. It has been my most difficult challenge of all in this long dance with cancer. I know, it should be among the least of my worries right now.

Like everything about this journey, I am determined to turn this experience into a positive. I have learned to cope, and I know this side effect has made me much tougher than I was a few months ago. I know that many people who are old and sick go through the struggle of eating every day due to medications or health conditions, and I witnessed my grandparents in India suffer through this too toward the end. Well, if it happens again to me hopefully I will have been through it once already and will be better prepared for next time. And good lord, when my sense of taste is finally returned back to me in between, I have promised to relish and appreciate food like never before in my life. I plan to worship food at every meal in better days.

There is a light at the end of the tunnel. If all goes well with my tests and progress, I will transition off of Romidepsin in October and start a new treatment of oral medications, where the chances of side effects being so bad are at least lower. It should return many hours a week back to me if we move past infusions. The joy of food should return. But I am prepared for whatever October brings.

And I shall end this self-indulgent sob story, which I hope did not bore you to death, on a positive and uplifting note. Perhaps even a triumphant one. My previous chapters focused on the keen intent to turn my diagnosis into a blessing one day soon. And here’s one way I have recently decided to manifest that, and to win at this game of life. When my taste is completely restored back to normal, which is hard for me to imagine at this moment, and I am one day totally cured of lymphoma, I have promised myself to pursue my on-again, off-again dream to open a new restaurant, no matter how difficult, with everything I’ve got. It will be a vegetarian restaurant, in line with my moral proclivities, but every last morsel will be so damn good that customers dining at my establishment won’t even miss animal flesh while at my table. You can bet that bread upma will be on the menu, bizarre as it will seem to many of my diners the first time, before they get addicted. And if that lofty dream becoming reality is the ultimate result of all this pain, then all of this mighty struggle will have been worth it in the final reckoning.