Soft Tissue Sarcoma Diagnosis
I was feeling perfectly alright and didn't have any symptoms at the time of my diagnosis; my diagnosis happened by chance. I am from Jaipur, and I had done my graduation from MNIT. On the occasion of 25 years of our pass- out, we had a silver jubilee celebration at my college. I had shifted to Japan, but every three months, I came to India and had my Ultrasound and blood reports done since I had a slightly fatty liver and was a hypertension patient too.
My brother-in-law has a diagnostic center in Jaipur. So, in December 2016, after the celebration at college, I went to him and got my tests done. The test results were good, and I went back to Japan. Later, in February, I again went to India, this time regarding my son's college admission. He wanted to get his tests done, so we all took the tests along with him. We were expecting that my brother-in-law will tell us something about my son's food allergy, but he asked me how my health was. I told him I was alright, which I was. He said that the test results were not good, so we had to see what exactly it was. He continued that sometimes this could happen due to technical issues in the lab, so let's have all the tests repeated the next day to confirm.
I went to the lab and got all my tests done, but the reports were the same again. The ESR, which was supposed to be 15, was 120. The Blood Test reports also were not good, so he asked me to go for a sonography as he had some doubt whether it could be TB or some other infection in the body, due to which my WBC and ESR were so high.
I went for sonography in his lab, but nothing came out of it. The doctor was confused about why it was so, and then my brother-in-law told him to do the sonography from the backside. The doctor suspected some black spots, so he referred me for a CT scan immediately.
While doing the CT scan, the technician might have realized something, and he asked me to lie down on my stomach so that they could do some more tests. It was an FNAC test, and the results were supposed to come the next day.
I had a business meeting in Mumbai, so I went to Mumbai and came back in one day. I called my brother-in-law and asked how the reports were. He told me that "it might be TB, so let me consult my doctor friends, and I will get back to you. Two days later, he took us to an oncologist. There, he revealed that there was something wrong. In the meantime, we got the tests done again in a cancer hospital. All the reports showed a tumor, and it was made clear that I had Retro De-differentiated Lipo Sarcoma, a very rare type of soft tissue sarcoma.
It was shocking as to how and why it happened to me, but when we talked to the doctor, himself a Lung Cancer survivor, he told me a very positive thought, which struck my mind, "The Doctors do the diagnosis, but it is you and your God who decides the prognosis.
When we returned home, we were in total shock, and I was questioning myself with questions like "why me? and "Why have I been chosen for this? But these thoughts stayed in my mind only for 2-3 hours. Then I started thinking positive thoughts like, till now, God has given me all the rare and good things, so this soft tissue sarcoma would also be one among the rare ones. I told my wife the same thing, and her reply made me laugh, "In this case, I don't want a rare thing; I just want our life to be completely normal. The only thing we were thinking was to be strong and move forward.
I was diagnosed just two days before Holi. There was a Holi celebration in our society, and thoughts like "Is this my last Holi? were creeping up into my mind. But then I went out and celebrated Holi with everyone. After coming back to my room, I made up my mind that the end could not be so soon and that too losing to a disease. This thought was continuous in my mind, along with the thought that I had to do many things before I left this world. So, I shifted my mind completely towards the treatment and was hell-bent on getting positive results.
I have lived in Japan for 25 years now. In Japan, because of the atomic bomb attacks, there are so many cancer patients. Cancer comes in the common vocabulary here and is not a taboo like in India. Everyone thinks that there are treatments for it, and we will get cured of it, just like any other disease. In fact, there are many cancer survivors in Japan who have survived for a very long time.
Soft Tissue Sarcoma Treatment
I wanted to start my treatment in Japan, so I came back to Japan with my son. We went and met the doctor there. In India, the doctors said that even though it was a rare type of cancer, it was in soft tissue and not in any organ, so they could do the surgical process and take out the soft tissues, and then everything would be alright. But when we consulted the doctor in Japan, he saw the reports and said that the tumor is 20cm and in the third stage. He said that the tumor has to be taken out, and the left kidney was also engulfed, so we had to take out the kidney too. It was too big a shock for us, but we tried to stay calm.
After two weeks, I went for an MRI and asked the doctor how the reports were looking now, but he said it's the same as before. The doctor asked me to consult an orthopedic oncologist. So my I went along with a friend to an orthopedic oncologist who told us, "We have to take out your femoral nerve, and added that we would keep a gastro oncologist in the operation theatre in standby so that while doing the surgery, if we find any impacts of cancer on your small intestine, then we can take out some parts of your small intestine too.
The side effects of taking out the femoral nerve were that out of the three joints I have (hip, knee and ankle joint), any one or two or all three could get immobilized, and I would have to walk with a stick throughout my life. That much was pretty sure, and this was, again, too much for us to digest.
When we came out of the doctor's office, he invited us to his house as his wife was also a cancer survivor. So I went to his house along with my wife and son. His wife runs a beauty clinic. We met his wife, who was 55 years old but was energetic, happy, and glowing. We got motivated after talking to her. She told us that she had uterine cancer, and had undergone Surgery three times and took 36 Chemotherapy cycles. She told me to get inspired by her present situation and that just like her, I will also be okay soon. These words gave us immense strength.
We went home and thought that as the cancer was very aggressive, we should take a second opinion. It's very challenging to go to a big hospital in Japan, but we got the reference to a very good hospital through our friends and that too directly with the director. That was, again, a grace of God. We always felt that God held our hand and guided us throughout our tough times.
That hospital was specially for sarcoma patients, so we thought that we were in better hands. The doctor saw the reports and said that "The procedure is the same as the previous doctors told you, and our opinion is also that you go for it with them.
We replied that there was a slight issue regarding the operation date, which was scheduled for a much later date. We asked whether they could give us an early date to get the operation done in their experts' hands.
They checked and confirmed my Surgery for 26th July. I continued going to my office till the 20th since I believed that we should try to follow the routine as much as we could. Then, just two days before my operation, I got admitted to the hospital. The doctor again explained everything to me. I have thalassemia trait, so my hemoglobin level never goes more than 10. Because of the tumor, my HB level went down to 6, so the doctors told us that we would do the blood transfusion first, and when the HB level goes up, we will proceed with the Surgery.
When I went to the operation theatre and lay on the operating table, the first thing I heard was "OHM" I initially thought that I might have heard it since I was praying to God, but then I heard it again, and I started moving my head in search of the source. The anesthetist came and introduced himself with OM and Namaste. I was surprised how a Japanese doctor could speak in Hindi, but then we talked, and I got to know that he is a Yoga practitioner and has also visited India.
And just that little bit of familiarity put me at ease and made me comfortable for my Surgery.
The Surgery went on for around 7 hours. I had a blood loss of 2 liters, and the cut was 27cm. I got my kidney and femoral nerve removed. I was then taken to the recovery room, where the doctor asked me to move my legs, knees, and ankles. Surprisingly, I was able to move everything, and she was surprised at that. My recovery was fast, and I was happy like a child that I had recovered.
Soft Tissue Sarcoma: Unexpected Relapse
I had my regular check-up on 1st February, and the doctors said that everything was fine. But the next day, I got a call from the doctor saying that we are suspecting something. They advised me to get a PET scan done on 8th February, which was incidentally our wedding anniversary.
We went to the hospital on 8th February and got the scan done. While we were waiting for the appointment, we were getting calls from India and Japan wishing us. But we didn't let anyone know that we were in the hospital.
We made our food at home, and before the appointment, we had it at a nearby restaurant. It was drizzling too, so it felt like a picnic. While on the one hand, there was tension; on the other hand, we were enjoying a picnic. I believe in two things,"Life is short; eat the dessert first, and "You do what you can do, and God will do what you cannot do. I've always tried to live my life based on these beliefs.
When we met the doctor, they revealed that a reoccurrence had happened in three places; near the small intestine, diaphragm, and L1. But it was adjacent and small tumors. The news of the relapse was a bigger shock than the first one. We were confused about how it could happen again when my Surgery went well, and I was leading a healthy life. But then I thought that I came out a winner the first time, so I can do it again. "No matter what, we should always have a positive attitude.
The doctors said that they would try six Chemotherapy cycles first. After three Chemotherapy sessions, I had my CT scan done, and we got to know that the drug was not effective in my case, as the size of the tumor was increasing. So, the doctors asked for some time to decide whether to go with a different type of Chemotherapy or radiation or operation. Later, they decided to go with radiation. So, I underwent 30 cycles of radiation. The good thing was that after radiation, the size of tumors got reduced, and cancer activity got decreased.
Changes in Lifestyle
We started thinking about reducing the effects of Chemotherapy and radiation, so we decided to focus more on the nutrition part.
We were eating healthy food for so many years. So initially, when I got diagnosed, it came as a big shock. I was taking Organic food and was eating everything in moderation. But I was taking sugar because nobody told us that you could not take sugar. It was like when taking the quality food, you can have some sugar along with it, and that's what we learned at the first stage. But when it relapsed, it was a bigger shock because we were living an even healthier lifestyle.
After reoccurrence, I thought that there was something that we were lacking. My wife had been following onco nutrition for a long time, so she messaged him on Facebook. We got his consultation, and he told us that we were already following a good lifestyle. But we asked for a proper nutrition plan from him.
We followed his program, and he set my lifestyle in a good pattern. What we were doing irregularly, we started doing regularly. I went sugar-free, gluten-free, and dairy-free. For the after-effects of chemotherapy, We were given a Detoxification diet. My wife had to prepare the food three times a day and send them photos for evaluation. I was much healthier because of proper nutrition, and all the chemo and radiation side effects were almost zero.
I believe that even though a lot of details are available on Google, information changes nothing; inspiration does. Inspiration comes from a mentor, and thus if we don't have a mentor, just following the information might not help us since every individual has a different body, metabolism, and reaction to everything. So never be afraid to seek advice and try to find a professional. The benefits will definitely follow.
We won the second battle with the guidance of onco nutrition.
Being More Mindful to Prevent the Third Relapse
My radiation got finished in July 2018. After that, we thought that since this has happened twice even after following the proper diet, we should now look for other alternative treatments that could completely and permanently remove cancer from my body.
One of my friend's wife had renal cancer. She used to be in a terrible condition, with the initial treatment not working on her. She could not even walk without aid. Her husband took her to a Urine Therapy Centre in Anand Kunj. He suggested that center because those therapies worked for his wife, and she has been cancer-free for 5-6 years.
We went there and saw that it was a more holistic learning center. We stayed there for ten days. I did fasting for nine days and also tried urine therapy. I reduced 7-8 kilos weight in just ten days. I learned more about discipline, the importance of yoga, intermittent fasting, Pranayama and the effects of meditation on our body. They taught everything in a theoretical and practical way. They told us to avoid the five whites, i.e.
- White salt
- White sugar
- White bread (wheat/maida)
- White rice
- Dairy products
They also taught us how to balance the five elements of nature in your body and how to feel your body. I also learned the Emotional Freedom Technique (EFT) there.
Soft Tissue Sarcoma: Third Relapse
I was following the techniques I learned in Anand Kunj. I went to India in January and planned to come to Anand Kunj every six months to rejuvenate myself. But in July, when I had my CT scan, I got to know that the soft tissue sarcoma had metastasized to my lungs.
I have some of my school friends in the US who are oncologists, so I talked to them, and they said that I should go for chemo first, but one of them said that if it could be removed, I should first go for an operation. I went for the second opinion again, and the doctor said that "We would do an operation first, and after that, you will never have any breathing problem. You would be free to go high altitude or sky diving as you wished. His words boosted our confidence.
Before one month of my operation, one of my friends introduced me to his friend who was researching about the effects of Intermittent fasting on cancer. I got in touch with him, and he asked about my journey. He said that I had been doing quite well, but I had to retrace my steps and see what I missed in order to reach my goal. He advised me that before the operation, I should start Intermittent fasting for 18 hours and that I should start immediately. It was hard for me, but I managed to do that. It had a very positive effect on my body, my immunity got boosted, and I was ready for my operation. I also did three days of liquid fasting under his guidance before the Surgery. One of my wife's friends did Pranic Healing for me, and it gave me a lot of positivity heading into the Surgery.
I went to the operation theatre with a very positive mindset. I had 3 inches cut on my left side, and the operation was completed in 2-3 hours. Recovery was also speedy, and within a week, I came back home.
My Learnings from Cancer
I am a learner from the beginning, and I have told my kids that "You don't die when your heart stops beating; you die when you stop learning. That is what my mantra is, and I have always tried to learn more about holistic healing and other approaches.
During this journey and before that, too, I think what helped me was reading a lot of inspirational books by authors like Louise Hay. I also did the art of living course in 2007, which was the beginning of my spiritual journey. After that, in Jaipur, there is a school named Sehaj Marg, which is now famous for the name of heart-fullness, where I learned a lot of things. I learned gratitude and constant remembrance. I feel both these go hand in hand. Gratitude is towards some superior force, in the form of God or whatever you believe in, and remembrance is the state of gratitude you are always in, constantly remembering him. So, if we follow these two things in life, then most of our problems get automatically solved.
I learned meditation too. In between my cancer journey, I did a course with Sidh Samadhi Yoga (SSY) and learned lots of things there that show how we are responsible for many things in our life. I also did the Isha Foundation Course.
I have been following a whole integrated approach, and I believe that all the things that happened to me were due to the grace of God because if you don't have his blessings on you, then you won't seek or work on that path or you won't even know about that path!