'Slowly learning to get comfortable in my own skin': My lymphoma story

At 22, the author was diagnosed with Mycosis Fungoides, an extremely rare cancer where the T Cells in her body developed abnormalities and attacked the skin.

Published: 03rd July 2019 06:16 AM  |   Last Updated: 03rd July 2019 02:55 PM   |  A+A-

Journalist Parvathi Benu (Photo | Rakesh Kumar, EPS)

Journalist Parvathi Benu (Photo | Rakesh Kumar, EPS)

Express News Service

CHENNAI: Inside my head, I’ve already written and published a book titled '50 Shades of Brown'. It isn’t a spoof to '50 Shades of Grey', with a protagonist named Gordon Brown. Instead, the book is about me, my skin and the lymphoma that lives in me. The book also has chapters on body shaming, self-loathing, validation, breaking down and fear.

I’ll tell you about all that, but first, let me begin by telling you a little about myself. I am Parvathi Benu, a 24-year-old journalist. I hail from Kerala and had a major part of my growing up in the Middle East. I studied in various Indian states and finally landed in Chennai three years back. Apart from all this, I suffer from Mycosis Fungoides, a kind of Cutaneous T Cell Lymphoma. It is an extremely rare cancer that begins where white blood cells, called T cells, develop abnormalities that make them attack the skin. Usually, these cells help your body’s germ-fighting immune system. So, let’s just say that the T cells in my body not only quit doing their job, but also planned a conspiracy against me. 

Too bad, their conspiracy wasn’t too discrete. The signs were (not too subtly) visible on my skin. It began as white patches on my thighs. Within no time, it also spread to my arms and my back. At one point, I even had a few white patches on my face. The most prominent patch is a big scaly one on my right arm. I’ve had it for 10 years now.

People often looked at it with disgust or curiosity. As time passed, I started wearing only long-sleeved tops. I didn’t want anyone to notice these patches. This took a toll on my self-confidence. I constantly sought validation. I was scared of being judged. All these years, I visited a number of doctors, who not only failed to diagnose the cause of these patches, but also passed a lot of mean comments. One of them even went to the extent of saying that I will most certainly die alone. I was 16 then.

Cut to 2017. I made a friend at work, who was genuinely concerned about my skin. By then, I’d accepted my fate and thought of living with these patches. But she was adamant that I visit a particular doctor. After much persuasion, I visited the doctor, who asked me to get a biopsy and an Immunohistochemistry done. 

The results came back a few days later and I couldn’t understand a word written on it. The next appointment with my dermatologist was a week from then and I couldn’t contain my curiosity. So, a friend who accompanied me to the doctor, clicked a photograph of the result and sent it to his sister, who is a doctor. That evening, I got a call from that friend. With tremble, fear and occasional sighs, he broke the news to me. I have cancer.

I cried for hours. I could see myself die as a skinny bald figure. I recalled everything that I’d heard about chemotherapy. I also ended up googling about my cancer type and a random result said that patients can live a maximum of 10 years with Mycosis Fungoides in their body. I was heartbroken. At that moment, I wanted to live. All of a sudden, I realised how kind life had been to me. 

But again, I was stupid to believe a source that wasn’t credible. I was continuously assured by my dermatologist and oncologist that I was not going to die. I was diagnosed at an early stage and cancer hadn’t grown strong enough to kill me. Thankfully, I had to undergo Ultra Violet therapy and not chemo. Here, I have to go inside a cubicle filled with tube lights that emit UV rays and let them fall on my body. In between, my body stopped responding to UVA rays and I had to shift to UVB therapy. 

I hid my illness from most people I had know for a very long time because I was scared of being judged. I did not want their fake sympathies. This excluded a few friends, colleagues and family though. They stood by me. I also met a lot of wonderful people during this span. I was constantly tired during therapy and sad about being alone in my battle. There was a lot of stress. Thankfully, my editor was supportive and he helped me manage work along with therapy. I do not know if I’d have continued working if I were in a different workplace. My mother kept encouraging me by telling me that she was proud of the strong girl that she raised. 

Two years down the line, the results are phenomenal. My skin’s clearer, yet a few patches remain. The latest biopsy says that lymphoma is in remission. In these two years, I made sure to eat a healthy heavy breakfast. I try my best to not skip a meal. I also exercise quite regularly. There sure are bad days, but I tell myself that this too shall pass. I’m slowly learning to embrace my body and get comfortable in my own skin. Maybe opening up about this is a step towards healing the mental scars that cancer caused. 

Mycosis Fungoides, a kind of Cutaneous  T Cell Lymphom, is an extremely rare cancer that begins when white blood cells, called T cells, develop abnormalities that make them attack the skin. 

(The author is a journalist with this newspaper)

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