My Cancer Journey Part II: A Grim Battle

Words I never thought that I would have to say or to think about…

I immigrated to Canada in May 2018 to settle down. My life was going in the exact direction I had dreamt of up until this moment – to travel the world, have kids and build my future in this beautiful country. My world flipped upside down, in one swift motion. I was diagnosed with stage IV Cancer, specifically, T-cell Lymphoma. At that time, I did not know what my doctor was talking about. I asked her again what she meant. She answered that it’s a type of blood cancer and not to worry because it is curable. After listening to that, everything paused for a few moments, and everyone was silent. My mom was next to me. I held her hand tightly as if I was about to lose everything. She hugged me in silence while trying to keep it all together. I just nodded my head, and I said, “yeah, okay, thanks for the results”. She kept going on about how and when we can start the treatment, but my mind could barely register one word. I was numb. It took them three months to diagnose my cancer. I didn’t understand much of the information at that time, as I was trying to wrap my head around the enormity of what had befallen me. At last, I burst in tears of helplessness.

I had just received the most horrifying, heart-wrenching news. The mind screamed in disbelief and denial – “How could this happen to me?”. The doctor said, “I want you to stay here and not plan to go to India. We want to start your first chemotherapy treatment tomorrow. You will get better treatment here.” The pathology team would do the final report of my bone marrow biopsy. We were still waiting to hear back from my oncologist about my full diagnostic report on the Hemophagocytic Lymph Histiocytosis(HLH).

AUGUST 28, 2019: THE D-DAY!

I was officially diagnosed with stage IV cancer (subcutaneous panniculitis-like t-cell Non-Hodgkin’s lymphoma) with HLH (Autoimmune disease). It’s an aggressive type of cancer and rare diagnosis with only 150 cases reported worldwide.

I was transferred to the Hematology Department on August 29th for my first chemotherapy treatment. I was not sure what was happening around me. I was confused. Everything was happening so fast, and I had a thousand questions. Chemo? Radiation? Surgery? Infertility? This doctor or that doctor? Cancer was a condition I could not control, but the way I fight it is up to me. I had to get a PICC Line Insertion done to get started in my right arm for my chemotherapy treatment. A PICC Line Insertion is a long, thin tube inserted through a vein in your arm and passed through to the larger veins near your heart. It stays with you until the end of the treatment. 

I used to cry when I was alone in the hospital. I was scared. I didn’t want to leave the world like this. Life is vital to me. I had lots of plans for the future. Despite my momentary weaknesses, I knew I couldn’t afford to lose faith or hope. I had to fight and beat cancer. I kept encouraging everyone around me and telling them that it was okay, and I’m going to be OK! I realized my family’s hearts were breaking for me, and I felt helpless. Probably not at that moment, but I knew that this would be a long road ahead. I would undergo things that I could never imagine, and I will need all the love and courage I can get from my family and my friends.

“CANCER DOESN’T HIT YOU ALONE, IT HITS YOUR FAMILY TOO“

A wave of emotions, what next……

Telling people was the most challenging thing for me. I had to share this news with my family and friends, as they were worried. I was not ready to share this news socially. Luckily, my husband tried reaching out to my close friends and my colleagues. My mom reached out to my family in India. My dad was in India and my family back home was hesitant about telling him this news. My Dad is my everything and I’m precious to him. My mom didn’t want to share this news with him over the phone and asked my Grandparents and Uncle to sit and tell him the news. He could not stop himself from crying and then dropped everything and came to see me before my second round of chemotherapy.

29th August, 2019: Rendezvous With Chemotherapy

On the first day of chemo, I was nervous and anxious. The day the oncologist walked in my room, pulled up a chair and told me about my cancer and its complications and how aggressive will be my treatment. I still have his sheet explaining how rare this cancer is and their is very less work up on this type of cancer. I was on stage IV lymphoma, so my chemo was a high dose. I was planned to get CHOEP treatment. Round one of red devil chemo. To get ready for PICC Line Insertion, I had to get it done in my right arm for my chemotherapy treatment to get started. The whole day went by in a blur and yet it was painfully long. I had a million of things running through my head and I wasn’t sure how to process any of it.

SEPTEMBER 2019: A FIGHT FOR NOT JUST MY BODY BUT FOR MY SOUL

After my second chemotherapy treatment, I was told that this could be the week where in I might start feeling chemo’s side effects. Some of the side effects of chemo are losing your hair, feeling weak, fatigued, nauseated, insomnia, slight fever and night sweats. The only way to cope was to keep a positive mind-set, stay healthy, and have faith in God. Every day I decide to face this challenging time with strength, determination, and positivity. I am grateful for my incredible husband, family, and close friends who went above and beyond to support me during these dire times. My close friends from Calgary came to see me as soon as they heard the news and spend time with me. My child hood friend from Toronto booked her flight to visit me before my second round of chemotherapy. Thanks to my friends and family members in India, UK, Dubai, and the USA who texted me, face-timed me and always had me in their prayers and thoughts. This made me feel strong enough to fight this battle like a warrior. I was not alone in this fight to defeat cancer. 

I have seen good and bad days. Chemo is a bitch. It’s as bad as they say it is. The pain was indescribable. I was bedridden for months in the hospital due to pain, aching bones, nausea, high fever, no taste, mouth sores, tingling fingers, mood changes and chemo brain. Chemo brain decreases mental “sharpness,” which causes me to forget simple things. It’s a mixture of feelings that moves deep into your soul and will change your life physically and emotionally. I have to go for six chemotherapy treatments as per my regimen, having one session each month. I used to get rigors and fevers, so I had been in this routine to get blood tests before getting chemotherapy to see if I have an infection or a virus. I was in the hospital until my two chemotherapy treatments were complete.

OCTOBER 2019: GRIM REALITIES

The worst part for me was when I started losing my hair. My eyelashes and eyebrows were gone too. Losing your hair is horrifying. It’s a part of who you are, and losing it makes you feel naked, different, and ugly. The physical changes of having cancer have affected me mentally. My husband cut my hair and made it shorter, so I don’t feel as much pain in my head. My family and friends were there during this time and used to make me feel better every day. My friends from the UK and the USA came to see me in October after hearing about this news. Cancer does not define who I am. I’m incredibly grateful for my family, my life-partner, and close friends who have been with me at every step.

Cancer isn’t just about chemo, radiation, losing hair, or losing weight. It’s also about losing yourself, who you are, what you look like, your job and your life. For me, I was being overloaded with anxiety and anger.

“A CANCER DIAGNOSIS ISN’T THE END“

NOVEMBER 2019: THE HARROWING LIFE OF CANCER TREATMENT

I’ve had three chemotherapies so far and my body was showing some improvement but my blood counts were still low. I was still getting some fevers; I use to get my blood tests and blood cultures done on daily basis to rule out any infections or viruses. I had my PET scan scheduled for November 14th, 2019. After my fourth chemotherapy treatment my body showed minimal improvements. I still had signs of cancer cells in my body which were not responding to the treatment and were still progressing. Additionally, there were signs of HLH. 

During this whole journey, I have battled many hardships. I was anxious about what will happen next. Will I survive and win this battle? This messed up my head, but I had to stay positive to keep my strength.

After completing my six cycles of chemotherapy, I got a call from my oncologists for a visit. He said I have to go for six more cycles of salvage chemotherapy this time. To top it off, I was told that the best treatment option given my medical scenario would be a stem cell transplant once I hit after partial remission. I was told, my stem cell treatment would be in Calgary at Tom Baker Hospital. They will review my case and suggest options for my transplant and chemotherapy.

I was in the hospital on and off because of high fevers, low blood counts and infections. My chemo journey has been quite rough with many obstacles in the way. I had lost most of my muscle mass, I could barely walk. My hands were so shaky; I couldn’t pick up my phone. The list goes on. 

I had to visit the fertility clinic to see if the doctor can freeze my eggs or if there was any chance of me getting pregnant. Still, the answer was no as I have already gone through heavy doses of chemotherapy. I lost my fertility and was thrown into menopause. The news devastated me. I had always wanted to have my own family. I can’t express what I have gone through after listening to this news. The doctor suggested a few other alternatives once I’m cancer-free or in full remission. I decided I would adopt a child once all of this is over.

December 2019: BACK HOME FOR CRISTMAS

A brief return to happy times – I was back home for Christmas! I couldn’t be happier to be at home with my family, however short lived. Before long, received another call from my oncologist about my previous PET scan report. He recommended thyroid biopsy to rule out the possibility of primary thyroid carcinoma. Ugh, not again! Why now, when I was just starting to feel a little better. Life wasn’t going to let me be. The anxiety of waiting for the results takes an unimaginable mental toll on your and your loved ones. Thankfully, the results came negative. 

Worst days were yet to come…..

January 2020: PARTIAL VISION LOSS

There is nothing with me, which can go smoothly in my life. I started getting some blurry vision in my right eye. After reaching out to my oncologist, he said it’s the side effects of the chemo medications I have been taking i.e. dexamethasone. It should go away with time. One evening, I was watching TV and suddenly I could only see partially through my right eye. We went to an Emergency Room that night. The next morning I had an appointment with my ophthalmologist. My doctor told me, my retina is heavily damaged and he was unsure if it will ever come back because I got CMV Virus in my right eye. Due to low immunity, I can catch any infection or viruses very easily. They tried giving some injections in my right eye, had a couple of eye surgeries and a biopsy to check if the lymphoma has progressed to my right eye. Thankfully, there were no signs of lymphoma in my right eye which was a relief. But since the retina of my right eye has taken on significant damage because of CMV virus the vision loss is permanent.

Maybe after my stem cell treatment, once my blood counts are better than before, they will do one more surgery to remove the silicon oil they put in the back of my eye and see if I can get some little peripheral vision back. Fingers crossed, I hope and pray that I can at least get partial vision back in my right eye. 

February 2020: A TINY RAY OF HOPE

I have been getting six rounds of GEMCis as my chemotherapy treatment every two weeks. It’s on going, until I am on partial remission and ready for my next phase which is stem cell treatment (Bone marrow transplant). It was supposed to happen in March-end 2020.

In the 7 months, I have…

• Had a countless number of physical examination, blood tests, X-rays, ultrasounds, Nuclear Medicine Scan, MRI’s, CT’s, and PET Scans.
• I was in ICU for 24 hours for my surgery
• Three surgeries, seven biopsy’s, blood and platelet transfusions, days of emergency night visits due to high fever and pain, 30 Grastofil Injections (To fight infections), six Ganciclovir Injections (into my right eye)
• Lost vision of my right eye due to CMV 
• Lost my fertility and thrown into menopause
• Underwent 12 rounds of high dose chemotherapy

My second Pet Scan was due on 13’th March 20, I started having Scanxiety !!!!

Cancer isn’t all that inspirational stuff that you see on TV or in movies. It’s a trauma. You look at yourself in the mirror and at the old photos and you don’t even recognize yourself anymore. Your body isn’t your own any more and you have no idea what’s going inside it. So be kind to yourself. I can go on and on about how devastating cancer diagnosis has been for me but what stand out the most is how I have continued to face my fears repeatedly.

Despite all that happened, I have accepted this as a moving point in my life which has made me much stronger for life ahead but I think it’s safe to say I am kicking cancer’s butt! 

To the best parents that never fail to support me, I can’t imagine what they might have gone through to see their daughter to face something like this. I am thankful for them and my husband everyday. I am strong because of my family and their continuous support. I am grateful to my husband (who is my companion/best friend/ rock), my brother, my close friends and prayer warriors.

The stem cell date has been delayed until further notice because of the COVID-19 pandemic.