Prachi Kulkarni cancer survivor
Kulkarni said that she tested positive for the BRCA1 gene, which puts her at an increased risk of developing breast cancer and ovarian cancer. Image Credit: Supplied

Dubai: When 36-year-old Indian expatriate Prachi Kulkarni found out that she would need lymph node surgery under her arm, as part of her ongoing cancer treatment, she wanted to make sure that her muscles are able to rebuild the right way after the operation.

Her solution? To do the Macarena.

“You need to exercise after the surgery to get back the range of motion. If you remember the steps for the Macarena, they have all the movements that make you move your arms and shoulders,” Kulkarni said.

Throughout the two years that she has undergone cancer treatment, her mindset towards her health condition has been similar – no-nonsense, positive, and sprinkled with a healthy dose of humour.

After studying in a culinary school in Goa, Kulkarni came to Dubai in 2007, to work in the hospitality industry. The sous chef spoke about how her passion for running marathons helped her a great deal in staying focused on regaining her health.

Picking a passion

In June 2019, out of the blue, Kulkarni decided to register herself for a trek in India. Even though she was not a fitness enthusiast, she did meet the basic requirement to register – applicants needed to be able to run 5km in 30 minutes. She was able to prove her numbers through her fitness watch’s records.

And while Kulkarni was able to successfully complete the trek, when she reached the peak at 13,000 feet, she could really feel the lack of fitness and stamina.

“I had years of no training or exercise … that is when I realised that I am not going to see myself like this again, I am not going to be this weak again in my life. I wanted to do the trek again, but with less pain,” Kulkarni said.

That is how she discovered her passion for running. In the next two years, she ended up running seven half marathons in India and Dubai, as well as a full marathon. In October 2019, as she was working towards participating in her second full marathon – the Boston virtual marathon – she injured her knee.

“I had been training for eight months. Ten days before the marathon, I tripped while running and injured my knee. Since I had three days of leave, I decided to go for a general medical check-up, too,” she said.

In the shower, a day before her general check-up, Kulkarni felt a lump in her left breast, the size of a tennis ball. A biopsy showed that the lump was benign. However, after the lump was surgically removed and sent for further testing, the results showed that it was cancer – Stage 2.

“I was directed to another oncologist and a month after that I started my chemotherapy,” she said.

Because she was in her early 30s, she was also asked to take a BRCA gene test, which showed that she was BRCA1 positive.

What is the BRCA gene test?
The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes (mutations) in either one of the two breast cancer susceptibility genes — BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2).
People who inherit mutations in these genes are at an increased risk of developing breast cancer and ovarian cancer compared with the general population.
Source: Mayo Clinic

She was advised to have a bilateral mastectomy, and Kulkarni said that she did not hesitate in going ahead with her surgery. Her only focus was to make sure that she lives a healthy life and reduces her chances of getting cancer again.

“I decided I am never going to have cancer again. Even though I still have a chest wall, the cancer has less mass to grow,” Kulkarni said.

“The funny thing was that the doctor spoke to me before the procedure and asked ‘Are you sure you want to get the mastectomy? You might change your mind’ and my answer was clear: ‘No doctor, I don’t have to wear a sports bra now’,” she added.

This attitude also helped her take some other critical decisions related to her health. As she had tested positive for the BRCA1 gene, she had an increased risk of developing ovarian cancer, too. To reduce the risk of getting cancer again, she has also had her ovaries, fallopian tubes, and some of her lymph nodes removed. She is also undergoing hormone therapy, as lowering estrogen levels can also help prevent cancer from recurring.

While having her ovaries removed was a difficult decision, Kulkarni said: “I love myself more than I want to have a child. I can barely take care of my own self, and as this is a genetic mutation, it would also put the child at risk.”

A long-distance hurdle race

At the start of her treatment, in 2019, Kulkarni said that she wanted to continue working in the kitchen throughout the treatment. However, the effects of the chemotherapy were rough.

“I probably underestimated what it would do to me,” Kulkarni said.

On Day 7 of her treatment, right before a Christmas brunch – which is a big day at work – Kulkarni woke up to a severe case of hemorrhoids, which made it impossible for her to get out of bed.

She was also, soon, unable to speak, because of mouth ulcers.

When she was going about her daily tasks like doing groceries or visiting the doctor, she would have a note ready on her phone – ‘Sorry, I have mouth ulcers’.

“I did not speak or eat for 12 days, I would type out what I had to say to the doctor,” Kulkarni said.

She said she was lucky to get a lot of support from her boss, which made it easier to continue working. Despite the warnings given by well-meaning acquaintances, Kulkarni made sure she did not quit work.

“It is a standing job, and I must walk a lot. Radiation made my body so hot that I could not go in front of the grill, cooking was quite tough for me because of hot flashes.

“A lot of people had told me that you will not be able to work again because they had parents or elders who had gone through breast cancer. But I’m different, I’m more determined to prove them wrong. When I resumed work, sometimes I would even do a 12-hour shift,” Kulkarni said.

Another challenge for Kulkarni was the impact the treatment had on her taste buds.

“My sense of taste had already changed. I don’t get the exact taste of food - mishti doi (sweet caramel yoghurt desert made in Bengal, India) tasted spicy to me. Luckily, as I am at the level of a manager, I would ask a colleague to taste test,” Kulkarni said.

But her own diet, Kulkarni said, was extremely restricted. From completely switching to cold-pressed oils for cooking and millet flatbread and brown rice for carbs, to removing all traces of sugar in her diet, Kulkarni was determined to get her health back on track.

“At work, I brought my own food. I would not eat anything without knowing what was in it. While I had lost my sense of taste, I could still get the true taste of mangoes. All throughout my treatment, I could eat and taste mangoes,” she said.

Salmon was another respite, as she could still feel its taste. Everything else, Kulkarni said, was eaten like medicine.

Limping ahead

Even though she had immediately cut her hair, not wanting strands strewn across her apartment from the side-effects of chemotherapy, very soon even the 1cm long hair started to fall off. Two weeks later, she was completely bald. A low blood count also meant that she had to rush to the emergency several times, because of the side-effects of the treatment. Her skin, too, was extremely dry.

“Your nails separate out from the skin and eventually you have to cut them. They fall out on their own, anyway. I would often limp, as my feet would bleed because of the excessively dry skin. My toes and heals got infected and my hemorrhoids had not healed. Nothing heals when you are on chemo,” she said.

Despite the challenges, Kulkarni refused to give up on running.

“I would bandage my feet and go for a walk – five kilometres every day,” Kulkarni said.

Even when she was nursing a Covid-19 infection, Kulkarni continued to keep her body active, by walking and doing Zumba.

She remembers how her husband would watch her walk around their one-bedroom apartment and cover a distance of two kilometres. Once she had recovered from the infection, she returned to a much more strenuous workout. Running around her building block or going to the gym.

But just the drive to stay fit was not enough, she would often feel the strain of the exercise on her system and made sure she always had a friend around when she was exercising, to step in if she passed out. Her husband, who is also a fitness enthusiast, helped Kulkarni dig in to her sporting spirit to power through the challenges.

“Because it was a tough time for us, my husband and I decided that we would assume that a 16-session chemotherapy treatment was a 16-mile race. So, when we had three sessions left, we would say ‘okay, just three miles to go’. Even in a marathon you feel dead when you are at that stage, but you want to finish it,” Kulkarni said.

She successfully completed her chemotherapy marathon in May last year. Her will to power through the health challenge has kept her going strong.

“Today, I am glad I did not rethink my career choice, as I am back to working in the kitchen. I have been training for kickboxing, an activity that I resumed after my treatment. I have been running during most of my cancer treatment and I competed a 17-kilometre run while on radiation treatment,” she said.

She went for a Positron Emission Tomography and Computed Tomography (PET-CT) scan three months after the completion of her treatment. The scan is used in cancer treatment and is a way to help find some types of cancer and learn about which stage the cancer is in. The results for Kulkarni showed that she is in remission.

Using art for catharsis

A source of comfort for Kulkarni, during the challenging two years of treatment, was her art. Journaling her experiences through sketches, she shared her cancer journey with her online followers.

Using art has helped her translate difficult concepts and experiences to people. From explaining what a hot flash feels like, to genetic mutation or even her daily medicine box, the art helped her disconnect and focus on drawing.

“Most of us do not know what the disease is about. I draw and paint my day in the journal to speak out about the disease and its side effects,” Kulkarni said.

Today, she is helping other cancer patients use art to vent their feelings and journal their day to maintain a healthy mind, having recently conducted an art workshop at the Al Jalila foundation.

The last mile

Another way for Kulkarni to lift her spirits was through dance. Right before her last chemotherapy session, she celebrated by dancing to a Hindi dance number from the 1990s, along with the nurse who had helped her throughout the treatment.

“One of the last half marathons I ran was in 2020, and when I finished it, I had actually received two medals - one for me and the other for a frontline worker. When I had gotten that medal, I didn’t know when I would use it. But on that day, when I was dancing with the nurse, I knew I had to give it to her.”

The chemotherapy was followed by radiation sessions – 25 in all. On September 16 last year, she successfully completed her last radiation session, too.

“During the session, they ask you to hold your breath for around a minute. As a runner, I can hold my breath for 90 seconds but I remember how I was unable to hold my breath during the last session, as my eyes kept tearing up. It was finally over. The nurse and I shamelessly cried at the reception after it was over. After she was done crying, she let me dance again ….”

Kulkarni said that having beaten caner, she now wants to live life by applying the lessons she has learnt.

“I will continue to speak and share my story and spread awareness about cancer through my drawings and illustrations because we know so little about the disease. Fitness training for cancer patients is one of my aims for specialisation because I can understand what happens to the body during and after the treatment,” she said.

While life may still throw challenges at her, Kulkarni said that she isn’t too worried about it. Another lesson she has learnt along the way – there is always a solution.