Sudhir Salian, 56, now living with multiple myeloma for 5 years, had a relapse in October 2021 and is now preparing for a stem cell transplant. Read how he strongly believes in the power of positive thinking, exercise and discipline to stay buoyant for tomorrow.
It was the summer of 2017. I had just turned 51. One morning when I stepped out for my usual run, I began feeling exceptionally tired and getting out of breath. I had to stop half way. I was wondering what it was. I had been travelling a lot to different countries, returning home at odd hours, sleeping irregularly. Maybe jetlag was hitting me. Though travelling was not something new to me and never an issue. Being the Director Export Sales head at a multinational, my job required me to travel extensively. But normally I would recover quickly from my international tours. I hated to skip my workout schedule. I run, swim, gym and play sports avidly. I have always been a fitness freak. Nothing stops me. Therefore, the breathlessness that morning caught me off guard.
हिंदी में पढ़ें: मैं अपने मल्टीप्ल मायलोमा के बारे में चिंतित नहीं हूं
Anyway that week a medical test was happening at the office. Being one of the senior members in my company, I enrolled for a complete body test. When the results came, I was quite taken aback. Many of my parameters were haywire. My haemoglobin level had dropped to 8. (Healthy range of haemoglobin for men is 13.2-16.6 grams per decilitre). That explained my breathlessness and why I had to abandon my run half-way. My creatinine was marginally high at 1.34 mg/dL (Normal level of creatinine is approximately 0.6 to 1.2). Couple of other parameters were not healthy. Even though I looked absolutely fit on the outside, my inside readings were all awry. I was quite shocked. I was advised to consult a doctor. I showed my reports to my GP. He said to stop gymming for a month.
Detected with multiple myeloma
But much before the month passed, my doctor called me one day and said: “Sudhir should we get a Serum protein electrophoresis (SPEP) test done to rule out the presence of abnormal proteins in the blood.” “I said sure doctor. Let’s do it. Unfortunately my SPEP results were not good either.
I was immediately recommended to Dr Abhay Bhave, haematologist-oncologist. That was my first entry into an oncology clinic. I had absolutely no idea what to expect. He saw my reports, and suggested a bone biopsy. He showed me the biopsy results, explained the condition and said I had multiple myeloma. That was the only point in my life which really shook me. I thought I was going to die tomorrow.
My family
When I broke the news to my family about my disease, they were shocked, but they quickly pulled themselves together and said: ‘We will fight it out together.’ We are four brothers and one sister. My Mom and Dad are no more, my wife passed away 3 years ago due to asthma. My only son is studying and working in Toronto. My family, friends, colleagues have rallied around me lending me positive support, encouragement and a helping hand which has played a pivotal role in my journey so far.
Also, my other worry about being detected with multiple myeloma is how will be the journey of life ahead, about my work and how I would manage it. I did not want my job to suffer at all. I have been with working with my firm for almost 15 years, surrounded by wonderful colleagues, extremely supportive bosses and a fabulous office. Being a workaholic, I feel ill at ease when I am not working.
Treatment
My treatment started immediately. I was put on targeted therapy combined with chemotherapy drugs. My main injections were Bortezomib and Dexamethasone. I must confess that they were not bothersome because they were subcutaneous, not intravenous. I had to be in the clinic for merely 30 minutes and it was done. So my office schedule was not disrupted majorly. In fact, 4 months after my detection of myeloma and start of treatment, I had to travel to Germany and Austria for about 2 weeks. I insisted with the doctor that it was crucial for me to travel. Fortunately, my blood report was good and he gave me the green signal to go. I took my injections with me, so I do not miss a schedule.
Positive mindset
I don’t dwell too much on my disease. It is not my temperament to brood. I read everything on multiple myeloma to keep abreast of news. But I have never suffered depression or anxiety. I have many things to do. My work, travel, cooking keeps me busy. I only think about the disease when I am in the clinic with the doctor, or I have to get an injection, or blood test. I look at my report, do a quick check analysis, and then I switch off totally. That works for me. That is my nature. I like to move forward and get on with life. That is a part of me. That attitude has helped me. I think I have been able to ward off many common side effects of my treatment like nausea, diarrhoea, fatigue, appetite changes because of my outlook and regulated life. I am quite a disciplinarian and seldom give in to indulgences.
Actually, because of my easy going temperament, I have always been giving pep talk and encouraging people both in office and among my friends. Recently, I mentored two people, one with multiple myeloma and another with lung cancer. I told them “No point fretting and thinking of the inevitable. What has to happen, will happen. I can’t advice you on your treatment, but I can give you moral support. You do your best, be positive. Nobody can help you emotionally and psychologically as much as you can help yourself.”
People tell me that they can’t believe I have multiple myeloma. My body language does not convey any illness. I don’t look as if I am suffering from a disease. I am so jovial and active. I travel. I still run. I took part in the Tata Marathon in January 2020. I go the gym regularly. I have started doing yoga. For one and a half years, I have doing yoga regularly every day. It has helped me remain calm.
Mental fitness
I clearly believe that your physical fitness builds mental strength. If you cannot get up and walk, then your mental health will also be affected. The mind starts playing games. Like for instance, yesterday I had 3 injections and today I had 3 injections, and I was feeling extremely lethargic. My body was aching. I felt I needed rest. But I went swimming. I did only 2 laps instead of 10, but getting into the water pacified me. You cannot be mentally fit, when your body is not supporting you. Physical health and emotional health are intimately intertwined in what's known as the mind-body connection.
Relapse
Till recently I was absolutely fine. I was travelling the globe. I was taking my targeted therapy with great discipline. Then I developed an infection in the stomach. Further investigations indicated that I had had a relapse after 3 years. Now that was quite a downer I admit. When this relapse happened I shifted to a newer drug called Carfilzomib. From October 2021, I have been on Carfilzomib. This I have to take intravenously which takes about an hour to administer. It is not as convenient as my earlier drug, Bortezomib, which took just 30 minutes.
Preparing for stem cell transplant
I have now been advised to go through a stem cell transplant (SCT), commonly called bone marrow transplant (BMT). It has been scheduled for the last week of May, 2022. One of the procedures prior to the transplant is monitoring my platelet count. I have already taken 14 injections. This is basically to boost your platelet count. I need about 2-3 million platelets. I am extremely confident that my system is robust for them to extract that much in one sitting.
My brother, sister and close friends will be there in the hospital with me during the transplant, my son flew in from Toronto for moral support. I know it is going to be a challenge for me. I will be cooped up in hospital for 15 or more days, when I am a complete outdoor person. It is going to be mentally difficult, but I am slowly getting ready to it. I am not going to dwell on the process, about loss of appetite, loss of hair, etc. I have read about it many times. Anyway I am going to experience it. Whether it is going to be good, bad or ugly, I have no choice. It is a small price to pay for the larger goal.
I am prepared with open arms for whatever comes tomorrow with a smile on my face.
