This article was first published in the Inspiring People series of People Pakistan Magazine in their September 2020 issue.
I don’t know where to begin. I don’t know how it began. Such a long journey filled with all kinds of emotions to be penned down in mere words. I shall try. 2008 began as a good year for me. Married to my soulmate, Fahad, and working at Aaj TV Karachi, as Manager of the Entertainment Department, life seemed as good as could be. Long hours and tedious schedules kept me busy.
By June that year, I felt that I was gaining weight for no apparent reason. I wasn’t eating much so I had a blood test done and everything seemed fine. I didn’t think much about it and started borrowing baggy, loose-fitting clothes from my mother.
It was while visiting the US in December, that I felt severe pain in my stomach and had to be taken to the closest medical facility, which was Shady Grove Hospital in Rockville, Maryland. They immediately had me airlifted in a helicopter to John’s Hopkins’ Hospital in Baltimore, Maryland as my condition was beyond their expertise. My best friend Azka,drove down from Connecticut to be with me in that helicopter ride. She has been my rock throughout my life. In the helicopter ride, the emergency medical technician kept talking to me in a soothing tone, all the while informing me of what was going on.
My parents and husband were back in Pakistan. They,along with my brother, Rehan who was in London,were informed that I had only OR hours to live. I cannot imagine the trauma that one phone call must have caused all of them.
I distinctly remember slipping in and out of consciousness, while being wheeled in on a stretcher. A team of doctors received me at John’s Hopkins’ Medical Center, all working on a public holiday. It was December 25th, 2008, Christmas morning. A senior doctor said to me, “Young lady, you are going in for chemotherapy as you have the lowest blood count we have ever seen.” I understood the word ‘Chemotherapy’ in my groggy state. I asked, “Why?” She said, “Because you have AML.” I asked, “What is that?” She replied,’Acute Myeloid Leukemia’. I managed to –register that fact and said, “Shukar Alhamdullillah. Ya Allah, youh ave given me this trial and you will fix it.”
When I was signing patient forms for treatment, they asked me whether I would want to donate my blood for research. I thought for a second and it hit me that someone must have given their blood for clinical trials in order for me to receive the best medication.If I give my blood today, maybe it will be beneficial for someone else like me tomorrow. I gave my consent.Thus, began my chemotherapy treatment for blood cancer. My father’s cousin was by my side throughout with Surah-e-Rehman recitation from YouTube on her laptop.
Ami and Abu reached me in March 2009, after three months, during which time, I had lost all my weight,appetite, taste buds and all my hair, even my eyelashes. When my hair started falling due to the high dose chemotherapy, I asked them myself to shave it all off. I accepted everything which was happening to me with gratitude. That’s it. In times of extreme pain, I would say, “Shukar Alhamdullillah.” Not once did the question of “Why me?” ever pop up in my head. Never.
I was simply waiting for my husband. I was living for him. I wanted to make him proud of me. Nothing else mattered.His photograph, his voice on the phone became the strength and motivation for me to keep going on even in times of extreme weakness. The last thing I wanted was for him to be sad, and my condition had done just that. Sometimes, I would be awake but so weak that I wasn’t able to even open my eyes. I would be sitting with my eyes closed but wide awake inside. Ami and Abu were devastated to see me like this, scrawny and hairless. It broke my dad’s heart. Mum started cooking for me, something she had never done before as she had been working all her life. But food was a luxury I could not enjoy then.Eating and digesting food was nearly impossible, hence, liquid intake through IV only. Chemotherapy makes you throw up constantly, with or without food.The lack of taste doesn’t help either.
I wanted to go to California and get treatment there as Los Angeles is where I had studied and longed to be. Maryland was cold and a stranger to me. I just wanted some sort of familiar comfort around me. The doctors at Johns Hopkins Hospital asked me to stay but without patient consent, they could not carry out any treatment, so they had to give in to my wishes. I requested them to pump enough blood in me through a transfusion, in order to fly out.. Abu flew back to Pakistan and Ami and I took a flight to Los Angeles.
Fahad finally got his visa in April, 2009. I went to the airport to receive him as my second round of chemotherapy had just finished. He was so happy to see me. His pain of waiting for so long was apparent in his eyes. I just wanted to take all his sorrows away. I was admitted to LAC-USC County Hospital. Fahad was by my side throughout the ordeal and was my biggest support and made me laugh with his sun walk. Yes, its the opposite of a moon walk! He treated me like a precious, delicate flower. I cannot thank him enough for his patience and kindness. He would personally dress my PICC line – its the tube from the arm to the heart – and would take care of everything for me. I couldn’t have asked for a better person in my life. So lucky and grateful for him.
I turned out to be a high risk patient so I was referred to The City of Hope Hospital in Duarte, California,which is about an hour away in the outskirts of LA.Many chemotherapies and radiation therapies later,my skin was black and I was unrecognisable but ready for my bone marrow transplant. Just like your DNA, your blood has a design known as the HLA.The preferred donor has to be a 9/10 match with the patient’s blood design. People usually do not find a matching donor for years. I thought that Pakistan would be the place to find a donor or South East Asia as ethnicity would count. I got to know that Pakistan does not have a Bone Marrow Registry. The best match is usually a sibling. My brother was sent a testing kit to London but he was a 55% match. Eventually, the National Bone Marrow registry found 19 donors for me. My second lease of life was on 9/9/2009, the day of my transplant. I call it my second birthday. Everyone sang Happy Birthday for a new life was beginning. Little did I know that this was just the beginning of another trial.
In October 2009, Fahad and I finally came home to some semblance of a normal life. Mum went back to Pakistan. Friends from all over the world called and prayed for me every single day. My dearest friend Faiza, Ali, my sweet heart Imran Abbas, Fahad’s Phuppi jaan, Daadi, Choti Dadi, and cousin Junaid, all called on a daily basis. My best friend, Azka called several times a day. So blessed to have her in my life.May God bless them all, Aameen
One day we went to the hospital for a regular checkup and were asked to be taken right away for some tests. I had Graft Versus Host disease. It is where the donor’s blood does not recognise the body and the body thinks of the blood as foreign and attacks it. If this war goes beyond a certain point, it can prove to be fatal. I was admitted to hospital once again. As my immune system was compromised and I couldn’t fight this war, steroids were pumped into my body, instead. Steroids are a double edged sword. They fought my war for me but by the time they were weaned off slowly, they ate up my bones.
I went home and after a month or so felt discomfort in my left femur. I couldn’t put weight on my left leg so back to the hospital we went. They recommended a bone decompression surgery where they drill cement into the femur to prevent it from collapsing.Slowly and steadily, after using walkers and crutches for months, I got slightly better but the cement didn’t hold. My femur collapsed. My father passed away on January 24, 2010. I couldn’t go as I wasn’t allowed to travel. Mum came for my surgery, which was a total hip replacement. Mum and Fahad were my caregivers throughout.
Mum left in May and my right knee collapsed in June. Fahad and I cried silent tears that evening. I had a knee replacement on June 15, 2011. My mum wanted to come but she wasn’t well so Fahad managed everything alone, day and night, my knight in shining armor. Mum got sick and I travelled to Karachi wheelchair bound. I spent a month with her. We celebrated her last birthday in December 2011. She was alright.
After I left, her health deteriorated again. She was lonely without my father. Fahad and I told her to move to LA with us. She was set to travel, and looking forward to coming to us with bags packed, and ticket booked, but was too weak. I took a flight down to bring her myself. I reached late in the night. She whispered that she loved me. The next morning, on March 11, 2012, she passed away looking into my eyes. That broke me and my left shoulder col-lapsed with the stress. I couldn’t lift my arm to comb my hair or even wash a plate. Slowly, with pool therapy,I regained enough strength in my shoulder to be able to do everyday tasks.
I decided not to be sad as my parents would have never wanted that for me. They will always be with me. Above all, Fahad is my guardian angel who is priceless and my MVP. God bless him, Aameen. Shukar Alhamdullillah.
I found out the name of my donor. He is German. Blood is blood. We are Facebook friends and twins now. My blood group changed from A-Negative to A-Positive. At the end of the day, aren’t we all simply the same? Just human beings. God is great and kind. If we give ourselves up to Him and have faith in only Him, He can make miracles happen.
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