Devika Tinsarran: A source of inspiration

IT WAS a beautiful Sunday morning; just perfect for lunch outdoors. As we three (Devika, mom and me) settled into our seats on the terrace of the restaurant, I was struck by how beautiful Devika looked with her face-framing ebony hair now growing back quite thickly on her once bald head.“You look great with short hair,” I remarked to her. She gave a little chuckle. “Thanks. It’s just great to have hair again.”
I remembered Devika having long, luxuriously, curly hair. I ran my fingers through my own newly-cut hair, trying to imagine what it must feel like to be bald.
With confirmation from Mt. Sinai Hospital that I am a carrier of the BRCA1 gene, along with all my necessary medical evaluations (CT scans, biopsy, ultrasound, blood work), there was no getting away from chemotherapy — eight rounds to be exact — and some radiation sessions; just how many would be determined later.

Sitting opposite me that Sunday morning in December was a woman who had just completed the exact treatment I was now facing.

OFFICIALLY DIAGNOSED
Devika Tinsarran was officially diagnosed in April 2015. In 2014, before her diagnosis, she had done the fine-needle biopsy which had assured her that it was just a giant fibroadenoma. However, during this time, she would complain about excruciating pain in her breast, tiredness, vomiting and weight loss. This led her to having a lumpectomy done to remove what should have been a fibroadenoma, but much like mine, it turned out to be a malignant tumour.

As we started to dig into our grub, Devika shared her emotional experience of finding out she had cancer for the first time. “What did you do? Did you know what stage then?” Mom and I rattled questions off to her.

With a smile on her face, she said, “When I was told I had breast cancer, I became numb. I looked at my ‘doc’ as he continued to speak, and I just heard myself stop him.

“I said, ‘Stop! Whatever you’re about to say right now wouldn’t make any sense to me! Give me a couple of days, and I’ll come back and we can go on from there.’”

I could relate to her reaction. Devika continued, “I didn’t want to do ‘chemo’, but I decided to, after a lot of consideration and my ‘doc’ telling me that my cancer was extremely aggressive, and that within a year’s time it will all be too late.”

GENETICALLY PREDISPOSED
Because of our age and health statistics, it is very likely Devika and I have both been genetically predisposed to cancer.

“What was the chemotherapy like? Where did you do it?” I asked, as I chomped down on the stir-fried pak choy on the plate in front of me.

“My ‘doc’ had recommended GPHC. I was skeptical at first, but once I got there and met everyone in the Oncology Unit, I felt comfortable, and decided to go ahead with treatment,” Devika responded.

I didn’t like the idea of GPHC for any sort of treatment. It wasn’t the lack of good medical practitioners that concerned me; it was the lack of care from the nurses who worked there.

I shared my experience with Devika. “I visited the GPHC, trying to enquire how to join the ‘chemo’ clinic just last week, and I came home frustrated by the rude nurses I met at the various surgical, diabetic and general clinics,” I said.

“No one knew where to direct me, and I felt as though I was disturbing the nurses from something. I did not feel comfortable.”

Devika explained to me that the Oncology Unit of the GPHC was located in its own building behind the Accident and Emergency area.

“Ohhhhhh!” my mom and I both chimed in. No nurse I had spoken to in my brief visit to the GPHC had told me anything close to that. Aside from the medical posters donated by USAID and other organisations, there is no signage or floor plan on the walls, explaining where all the clinics and departments can be located.

Devika sang the praises of the nurses in the Oncology Unit. “I don’t know about the other nursing staff, but the ones in ‘chemo’ with me were wonderful; they’re like family to me now.”
She assured me that her treatment at the GPHC was comfortable, and recommended that I do it there. “And it’s free,” she added.

‘CHEMO’
Chemotherapy can cost as much as $150,000 to $200,000 per cycle at private institutions. I was reminded that services like free healthcare are one of the reasons why we pay taxes, and we should take advantage of them once we are in a position to do so.

We continued to touch on many side effects of chemotherapy. Devika explained that each round, or cycle, would be administered intravenously, and the procedure lasts up to three hours each time.

There was a break of 21 days between each cycle, for the patient to be able to build their white blood cells up, and to maintain a healthy immune system through vitamin and food intake.

Devika told us a bit about the different ‘chemo’ drugs, and how they affected her.

“I did eight rounds: I did four AC and four Paclitaxel. AC made me so sick I was vomiting every time I ate or drank anything. I was so tired all the time. Lost my hair after the very first round!”

My mom and I exchanged significant looks. I touched my hair again. I had cut my once almost waist-length hair earlier that week; I felt it would be easier to cut my hair off slowly, in my own time, rather than have it fall while it was still so long. I felt it would be less traumatic.

Devika continued: “It was emotional to see my hair fall; I had long, beautiful, curly hair! I knew it was going to fall, so I started to cut it off, bit by bit.
Then one morning I woke up and I took off my sleeping cap, and the entire front of my head was bald! The hair was all in the cap! It was then I decided I didn’t want to see that every day. But what was the real touchy part was that moment I decided to have my brother shave it all off! I cried for the first time when I saw myself with no hair.

“Paclitaxel made every bone in my body ache; I couldn’t walk on my own for days; my husband had to be my arms and legs.”

Devika, while sharing her story with us, continued to have a smile on her face, no matter how painful the memory was. And this, in essence, is part of what has made Devika such a fighter: her positivity, perseverance and strength.

We spoke briefly about radiation, which she describes as “tiring”, and not being able to shower for a month during radiation, as well as the severe burns and scarring she experienced after.

Her story inspired me that day to be brave and make the hard decisions I needed to if I wanted to enjoy a healthy and long life. Speaking to someone who had survived what seemed like such an ordeal and still be in good spirits was very promising to me.

Before leaving the restaurant, I asked her how she was able to get through it all. I felt overwhelmed just imagining her struggle.
I could feel the powerful energy of her words as she responded. “I realised that life can be taken from us, just like that…I live now, every day, trying to help as many people that will let me help them fight this disease.

“I wake up every day thankful for all I have: wonderful husband who has been my absolute rock through my battle; caring family and friends; and my faith in God, which helped me through it.

“I forgive easily now, and I don’t let anything bother me…. I eat healthy, I exercise, and laugh as much as possible.”

Devika has just had her clinical three-month check-up, and is doing great.

Next Week: My first round of chemotherapy