PATIENT STORY—Leukemia, Dehradun

Tell us something about yourself and your family.

I am Tapas Biala and I am 32 years old. I run an adventure company and have been a professional mountaineer from a very young age. My family is based in Dehradun; both my parents are education professionals.

What were the first signs that made you suspect that something was wrong with you. What was your age then?

There were no major symptoms. I had persistent stomach issues such as nausea, a lack of appetite and acidity. There was a little bit of weakness and lethargy but we did not really notice it at the time. I was 27 when I got diagnosed.

 

Tell us about your journey through diagnosis and treatment. What were your feelings? Who helped you in this journey, especially in diagnosis and to reach the correct doctor/center for treatment? Were finances an issue? How was that managed?

The diagnosis was quite straightforward. My blood reports were chaotic. TLC’s which should be between 4000-10,000 were at 70,000, platelets which should have been at between 1,50,000 to 4, 50,000 were at 19,000. It was quite clear from the first test itself. Further investigation confirmed the diagnosis and the first bone marrow test revealed around 70% blasts/immature cells. Treatment had to start immediately and Chemotherapy started within 3 days of first diagnosis.

 

There were no immediate thoughts to be honest. Because my platelets were so low at that time that all we were occupied with was finding donors to bring my platelets to a non dangerous level. After that it was about bringing me back to Delhi to begin the treatment, so while we all did ponder over the usual questions like what just happened, why me etc, we were all just taking it a step at a time—getting blood counts to a safe level, figuring out the best place for treatment etc.

 

It also helps tremendously when you have a support system as strong as I did—family and friends and I never had the time to really think about what has just happened because I was always surrounded by so many friends and family and creating a happy and cheerful atmosphere all the time at the hospital. It almost felt like a reunion between so many friends. Friends coming along, catching up, laughing, joking bringing good food for everyone and because for the first few days we rarely had a negative moment that it sort of lifted my family up as well. So for the first few days I never fully reflected on the seriousness of the situation. Once the treatment started, restrictions on the number of visitors also started. That was when I did not have as many positive moments but by then I was in the middle of my battle—chemotherapy and its million complications that again we did not have to time to reflect on the mental side of my diagnosis.

 

This is an important advice in my opinion for anyone who gets diagnosed. Your world does come crashing down and everything changes. But finding reasons to stay happy will make it a little easier not just for you but also for your loved ones. I went on to even write about a few hypothetical benefits of being a cancer patient purely because joking about it and laughing through it made the struggle a little easier. 

We were recommended Medanta, Gurgaon at first because the head oncologist there came with a very good reputation. After the first Chemo the same people recommended Rajiv Gandhi Cancer Hospital in Rohini, Delhi for the Bone Marrow Transplant, because of the reputation they had when it came to Bone Marrow Transplants.

Yes, it was quite expensive. I had medical insurance of 5 lacs but that was nowhere near enough. I probably was among the more privileged people because our family had the kind of financial resources. So we did not have financial issues but it was a massive drain on our family’s savings. My father probably postponed his retirement because of my treatment.

 

Are there any support groups, communities, or relatives who have helped you through the journey? If so, please share their contribution and contact details.

Family and friends. My sister’s Reiki group in Mumbai.

Are there any other associated health problems that you have to deal with?

GVHD—Acute in the Liver, Chronic but mild in the eyes, liver and skin

 

 

What treatments did you try and which one helped you the most? Where and from whom did you take it? Are you still under treatment? If yes, what and where?

Chemo in Medanta, Gurgaon followed by Bone marrow transplant in Rajiv Gandhi Cancer Hospital, New Delhi. I need medication for my eyes (Dry Eyes caused by GVHD). Tests and check up every 6 months.

Have you made any lifestyle/dietary changes to manage the disease/disorder? If so, of what kind?

For 2-3 years post transplant, for fear of infection I was not allowed to eat out, even for home cooked food it had to be freshly cooked, nothing raw and only fruits with thick peels. This has become a matter of habit now.  I eat out very rarely and generally follow similar habits for eating.

I have tried to cut down on processed foods as much as possible from my diet. My lifestyle was active before this as well so no changes there.

 

How do you cope up with your illness? Do you wish to give any message/advice to patients like you?

There is no easy way to cope with it. It is a constant struggle and battle. But you have to fight it. Accept that you have to and that you are going to fight and come out of it. Laugh and fight and you will make it a little easier for you and your loved ones. It is a good time to enhance your knowledge in life in general. Pick up some online courses, do lots of reading, catch up with your friends. Consider this a little sabbatical from your usual busy routine that didn’t give you the time to do all this and in no time you will be right back to your busy old self.

Try to not get bogged down. This is easier said than done and I still have bad days that bog me down, but make a conscious effort to finding little reasons that make you happy. Look forward to the things that you are going to do once you recover.

 

Note to friends and family: It is important to simply be there. There is nothing more frustrating to a cancer patient that people giving him/her advice on how to cope with it. You have very little idea of what that person is going through and you will never be able to understand it. The best way to help them is to simply be there and be supportive rather than offering advice.

 

Do you have any long term goals?

Yes, I aim to climb Mt. Everest one day.

Are you open to some other patients contacting you through us?

Yes

 

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