T-cell lymphoma (TCL)
In May 2018, I moved to Edmonton from India with my husband hoping for a new career, a new life, and to start a family. Things were all right at first. Everything was going smoothly; I was living my normal life, but life had different plans.
In May 2019, I began experiencing high fevers with no other symptoms. Weeks passed, and I found myself in the emergency room numerous times. I was told that it was just a normal viral fever and took Tylenol to relieve it.
Weeks passed, but the fever persisted. I visited my general practitioner again and even the emergency room, but there were no answers. I don’t have a count of how many times I went to the emergency room, waited for seven to eight hours, and always got the same answer: “It’s just a fever. You don’t have any other symptoms, so just take Tylenol.” I was on Tylenol every two hours, back-to-back for three months.
I was admitted to the hospital. There, I was treated as a subject to extensive scans, biopsies, X-rays, bloodwork, and even a laparoscopy. I underwent numerous biopsies and surgeries and was seen by various specialists and doctors for two and a half months at the University of Alberta Hospital, but still there were no answers.
I felt like a research patient where every doctor was coming to see me, and no one had any answers.
After three months of being in the hospital, with swelling due to IV fluids, along with continuous fevers, fainting, and ulcers, I gave up. Unable to find any answers in Edmonton, my husband contacted doctors in India who suggested that I should come back to India so that they could examine me in person, and we could get answers.
At the same time, the doctors at the U of A Hospital wanted to do one last biopsy after the endless number of biopsies already done within those three months. It was a skin biopsy, and I was promised that it would be the last one. Exhausted and discouraged, I was reluctant at first. I had so many scars on my body and had gone through so many scans and bloodwork for the past three months, still, my husband said that I should give it a try, and so I did.
After almost three months in the hospital, on August 28, 2019, I was diagnosed with stage 4 subcutaneous panniculitis-like T-cell lymphoma (SPTCL). My diagnosis was complicated by hemophagocytic lymphohistiocytosis (HLH), an autoimmune disease. This form of cancer is very rare with only 150 cases reported worldwide.
I didn’t know anyone with cancer, nor did I have a family history of cancer. Hearing that you have cancer changes your life and the lives of those who care about you. When you’re faced with the greatest obstacle and the only choice is to live, you take a breath and focus. Cancer was a condition I could not control, but the way I reacted was up to me. It was so difficult to take everything in at that time when my doctor said the “C word.” Nobody wants to hear that.
The doctors were rushing me into aggressive treatment right away because my cancer was at an advanced stage, and my health condition was getting worse every day. My husband wanted a few hours to discuss it and take some time to process it. For the past several months, they’d had no answers, and now they learned it was cancer.
I received my first chemotherapy session at the U of A Hospital on August 29, 2019, and the oncologist explained to me the type of cancer that I had and the treatment plan. I had a very rare type of cancer, and they weren’t able to diagnose it until now because the symptoms for it are still insufficient. After the first two of six chemotherapy sessions, I was finally discharged from the hospital.
Chemotherapy itself wasn’t easy, but I was relieved to be finally home again after four months. For the remainder of my chemotherapy sessions, I went to the Cross Cancer Institute. The treatment was somewhat successful but not completely. They suggested that I should undergo a stem cell transplant which would allow me to live a little longer; the alternative was to continue with chemotherapy until my body can take it.
In December 2019, I met with a fertility specialist and was told that my fertility was also compromised, and I was told that I had gone into early menopause. I wonder sometimes that if I had been diagnosed earlier and had been told about potential complications with my fertility, I may have gotten my eggs frozen. I also met with my team for the stem cell transplant at the Tom Baker Cancer Centre in Calgary. The plan was that I would receive aggressive chemotherapy every week in January and February 2020 to put my cancer into partial remission so that my body would be ready for the transplant. Whether I would survive or not, I just wanted to pass over this process that was happening, my thoughts at that moment.
In January 2020, I lost my right eye vision due to CMV retinitis. I felt disappointed that no one took me seriously at that time even though I tried reaching out to my team and went to the emergency room.
The stem cell transplant took place in April 2020 during the height of the COVID-19 pandemic. As a result, I was isolated for 32 days with a strict, no-visitor policy. The stem cell transplant was unbelievably tough for me without having my family around for support. But with my younger brother being my 100% donor match, it was ultimately successful. Being in the hospital by myself, I wondered whether I would get out alive or not. I was just fighting for my life every single day.
Fortunately, the stem cell transplant was successful. However, it wasn’t easy due to the amount of stress and changes to my mental health and physical appearance. This whole experience has given me a new perspective.
My amazing husband and family got me through those tough times. It’s been a long journey to get here. At some points, I felt like this day would never come. But here I am, getting better every day and living my life. I accepted that this is my new normal, and I’m trying to live each day. I was lucky to get a second chance at life.
It’s been three and a half years since my cancer diagnosis, and it will be three years in April 2023 for my stem cell transplant. I am currently NED (no evidence of cancer) but do go for my follow-ups (three months for bloodwork) and PET scans every year.
Every story is different, and every journey is different, but if we have that strong willpower to live and survive this, we will do it. I know it’s difficult, but we have to. I feel happy if I'm at least able to help others and bring change to those dealing with cancer in our social community.