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Himmat and Khushi: A love story

2023; Medknow; Volume: 6; Issue: 3 Linguagem: Inglês

10.4103/crst.crst_141_23

2590-3233

Vandana Mahajan,

Childhood Cancer Survivors' Quality of Life

Khushi* was waiting outside the outpatient department (OPD) while her husband, Himmat,* was deep in discussion with the oncologists. I, too, was a part of that discussion. Khushi's symptoms had taken a turn for the worse. The treatment was no longer working. The disease had spread to her pancreas, and she was in severe pain. The discussion centered around providing supportive care to Khushi. The advice given to Himmat was to stop all active cancer treatment and focus on relieving her symptoms. Himmat was in agreement with this plan. While the discussion was going on, I stepped out to meet Khushi. She was sitting in the waiting area. On seeing me, her face lit up. She extended her arm to me. I held her hand. "Ma'am, will you please tell the doctor to treat this new infection in my pancreas? It's causing a lot of pain," she said to me. I assured her that I would convey her message. We had a small conversation and she kept holding onto my hand. I took her leave and gently pulled my hand out of her grip. She held it even tighter as if she did not want to let go. "Will the pain go away, ma'am?" she asked me again. I told her that the team would do their best. And then I returned to the OPD. That was my last meeting with her and I shall never forget it. It was 2019. Khushi and Himmat were on cloud nine as they were expecting their first child. Khushi had almost completed her second trimester when she experienced a change in her voice quality. She was given a course of antibiotics but when, after a week, there was no improvement, an ultrasound of the neck was advised. Following the sonography, the couple was not told anything, but Khushi was advised to undergo further scans. Since she was heavily pregnant, a computed tomography (CT) scan would be dangerous, so instead a magnetic resonance imaging (MRI) was ordered. The report showed enlarged nodules all over her body—in the lungs, abdomen, spine, neck, and pelvis. Khushi was advised to undergo a biopsy. A sample was collected from a nodule in her neck. The couple was in a state of shock. They had never imagined that something like this could happen to them. When the histopathology report arrived, their world turned upside down. Khushi had metastatic stage IV non-small-cell lung cancer (NSCLC). Himmat confessed to me that what was supposed to be the happiest time of their life, awaiting the birth of their child, was now clouded with sadness. The family decided to withhold this information from Khushi. She was not told about the cancer. She still thought that she had an infection. After taking multiple opinions that confirmed the original diagnosis, the family now had to decide on the treatment. The first few oncologists they met told Himmat that Khushi may have less than a year to live. One oncologist suggested chemotherapy, even though Khushi was heavily pregnant. He also advised Khushi to undergo an abortion. Himmat, as a husband, was heartbroken, but as the primary caregiver, he also had to make all the decisions for Khushi. He then chose to take another medical opinion from one of the biggest cancer centers in the country. Though the diagnosis remained the same, a molecular panel testing, next-generation sequencing (NGS), was suggested. Khushi did not have a lot of symptoms, other than the change in her voice. The advantage was that while they were waiting for the test results to become available, Khushi would enter the seventh month of pregnancy, and if absolutely necessary, the child could be delivered. The family chose this option. Khushi's tumor tested positive for a ROS1 mutation.[1] A fluorescence in situ hybridization (FISH) test was also done to confirm the ROS1 mutation, which too was positive. Himmat was overjoyed as now his wife could be started on an oral tyrosine kinase inhibitor, crizotinib, with minimal side effects. And Khushi could now have a better quality of life. The day the report arrived, Khushi was admitted to a hospital where she underwent a Cesarean section to deliver the child. She was in the seventh month of pregnancy. Himmat and Khushi were blessed with a beautiful daughter. The baby was moved into the neonatal intensive care unit (NICU), and just hours after the delivery, Khushi took the first dose of crizotinib! Himmat shared that the hardest part for Khushi was that she was not allowed to breastfeed her baby because she was taking crizotinib. Five days later, the family returned home. I asked Himmat, "Did Khushi say anything? How was she emotionally? Did she question you about the infection?" "Khushi never asked anything and no one in the family told her about the disease. She believed she had an infection that could be cured," said Himmat. After 3 months of crizotinib, Khushi underwent a positron emission tomography-computed tomography (PET-CT). The results were very encouraging. Some lesions had reduced in size and a few had completely vanished. Within 15 days of taking crizotinib, Khushi's voice had also become normal. The PET-CT scan showed a lesion in her throat that had been pressing the vocal cords resulting in the altered voice quality! Khushi took on the role of a new mom and was busy taking care of the baby and Himmat resumed work. Khushi became quiet, self-conscious, and uncomfortable as she had gained a lot of weight because of crizotinib. Every 3 months, the PET scan was repeated. In September 2020, she underwent an MRI of the brain, which showed the presence of multiple tumors. The disease had now metastasized to the brain. The PET scan also revealed that the disease burden had increased in most parts of her body including the lungs. Khushi was now advised to change from crizotinib to lorlatinib. Lorlatinib had fewer side effects, and Khushi adapted comfortably to the new medication. A repeat MRI of the brain in December revealed disease progression. In January 2021, Khushi underwent 10 fractions of whole-brain radiation therapy. By now, Khushi was beginning to have an inkling that she did not have an infection but had cancer. When she asked Himmat about it, Himmat told her that there were non-cancerous lesions in the brain that were treatable and Khushi believed him. Khushi had long and lustrous tresses which she was very proud of. Unfortunately, because of whole-brain radiation, she lost all her hair. This came as a rude shock to her. It lowered her morale a lot. But Himmat loved his Khushi a lot. Not wanting to see her so upset, he began searching the internet for a good place to buy a wig for her. The first wig they bought was not very comfortable for Khushi. Himmat and his mother assured Khushi that come what may, they would find her the best quality wig. Himmat started enquiring again and this time he took Khushi to a wigmaker who made wigs for the movie stars. Khushi got a new wig, just as she liked and was very happy wearing it. Himmat shared with me that the wig was very expensive but all that mattered to him was his wife's happiness and he did not hesitate even once before buying her the wig. Such was his love for his Khushi. The next two scans were encouraging. The lesions had shrunk in size, and a few had even disappeared. But by November 2021, things took a turn for the worse. Khushi started having falls, and she was unable to balance her body—the connection of the brain to her body parts appeared to have been affected. If she sat down, she could not get up, and she could not move her arms to eat. She was rushed to the hospital where an MRI revealed brain swelling (edema). She was admitted and put on dexamethasone. Within four days, the edema reduced, and she returned home. But a month later, the same symptoms recurred. This time she lost bladder control as well. Khushi was gradually losing control over her body. There were times when she needed help to even turn her face from one side to the other. She experienced mood swings and bursts of anger which the family found very difficult to deal with. Her husband and the rest of the family were heartbroken to see their fun-loving, vivacious Khushi in such a state. There were recurrent episodes of edema of the brain for which dexamethasone had to be given every time. In January 2022, Khushi was put on monthly bevacizumab injections. She had to be hospitalized again in March 2022. It was during this time that I first met the couple. I was asked by the medical oncology consultant to speak to them about her worsening condition and the very poor prognosis. I met them in the room where Khushi was admitted. I asked Khushi how she felt. "Nothing much, I just have some pain in my head and I don't like being in the hospital," she shared with me. It was during our conversation that I discovered that Khushi was an artist. She made beautiful paintings. I asked her if I could see some of her work, and she very enthusiastically agreed. Himmat showed me pictures of the paintings Khushi had made, which he had saved on his mobile. I was impressed and in awe of her amazing talent. I also found out that painting was her coping mechanism when she felt low. Her energy lit up the tiny ward she was in. Himmat and I then walked out and had a conversation. He knew everything, including the fact that Khushi was living on borrowed time. I asked him what he wanted. With tears in his eyes, he responded that he wanted quality of life over quantity for his dear Khushi. He was very sure that he did not want to increase her life span by inflicting more trauma on her body. Such was his love! By May 2022, the disease burden increased significantly and the cancer had metastasized all over her body. Now, she was advised intravenous chemotherapy as the final line of treatment. After only one cycle of chemotherapy, Khushi's body gave in. She could not stand up after that. She was in severe pain and deteriorated rapidly. Himmat was in regular touch with me over phone calls. We had spoken about letting her die peacefully and not opting for a nasogastric tube/percutaneous endoscopic gastrostomy or putting her on any kind of intravenous fluids. During one of the visits, a palliative home care team told Khushi that she may not have too long to live. In the words of Himmat, "That day she cried a lot. Though she had no expression on her face, tears flowed down her cheeks. She looked at our daughter and wept." On June 29, 2022, around 11:30 pm, I got a message from Himmat that Khushi had died. A new star was added to the sky above. A star that is happy and glowing. It's called the "star of Khushi." From a caregiver's perspective, Himmat shared the following things with me: He knew of the poor prognosis from day one but could not speak to anyone about it. He would lay in bed, think about it and cry silently. From the day of diagnosis, he started taking lots of pictures of Khushi with their daughter. He knew Khushi had limited time to live. These pictures are priceless treasures for him and their daughter. There was collusion—Himmat had not disclosed right till the end that Khushi had stage IV cancer and was dying.[2,3] Himmat shared with me, "I regret this sometimes. I wish I had told her, then we could have discussed what she would have wanted. I will never know now what her wishes were and what she would have liked." From the perspective of a palliative care counselor, I would like to add that if counseling support had been provided sooner, the counselor could have counseled them better about how and why it was important to break the collusion.[3] Then Himmat would not have to live with regret. The burden of a caregiver is not recognized.[4,5] He received counseling support much later in their journey. It is very important for caregivers to get this support early on. His brother made many sacrifices to support them. Himmat's family was his backbone. He says he was lucky to get the right guidance from the treating team. Khushi died peacefully. "Endings matter, not just for the person but, perhaps even more, for the ones left behind."—Atul Gawande, Being Mortal *Names have been changed for privacy reasons. ABOUT THE PATIENT Khushi was a simple, fun-loving girl. She loved traveling with her husband, Himmat. She was also a very talented painter. In spite of struggling with the disease, she never complained about why so much was happening to her. She was a wonderful mother who would have enjoyed seeing her daughter grow. She was a loving wife, a doting daughter and daughter-in-law. ABOUT THE AUTHOR Ms. Vandana Mahajan is a Palliative Care and Cancer Counselor. She is associated with the Mumbai-based non-government organization, Cope with cancer-Madat Trust. She works as a volunteer counselor in the thoracic disease management group at the Tata Memorial Hospital and also provides cancer counseling across India via online platforms. She is a cancer survivor too! E-mail: [email protected] Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.