Shutterbug's Blog

Living with Multiple Myeloma in Hyderabad , India . Random musings .


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To Reveal or not to Reveal

Having been diagnosed with MM in Oct 2011 and come a long way ,  a thought often arises in my mind as to whether I should reveal/discuss my condition with whom I spend a considerable amount of time.

A lot of people around me , at work , friends and relatives already know to some extent. They may not know exactly what I have been through. However my observation is that no one ever asks me any direct questions. Many of them come to know through various channels but prefer not to talk about it. 

Either they dread talking about this topic or they feel they shouldn’t cross a certain limit as health is supposed be a private matter or they don’t start the topic because I don’t encourage such a discussion or people are engrossed with their own stuff.

Whatever be the reason , I am quite comfortable with the way things are happening around me….ignorance is bliss 🙂

I myself have been through similar situations in the past , much before I was diagnosed, when I came across people who were diagnosed with Cancer and I would be terrified to even look at them. So , here I am , having survived Multiple Myeloma and writing from the other side :).

hmmm , what goes around comes around !!  

When someone asks me how I am doing , I give a big smile and tell them ‘I am doing well, thank you’. There are a few confidantes at work, with whom I share information about my tests, my medications etc . I also update my Boss who has a lot of interest in matters related to health / Alternative treatments and gives me some advise too.

There are a few online friends from school and college with whom I feel happy to share the status of my health.

Apart from my parents, brother and sister I do not discuss with any others in the extended family. Of course , hubby is a constant support 🙂

There are times when I feel tempted to share the link to my Blog with everyone at work, extended family and with all my classmates  from school and college. I guess I am not yet ready to openly declare…maybe some other time. I can already sense that a few are staying away from me and it is ok. 

I shouldn’t be thinking too much about who knows and who doesn’t and concentrate more on enjoying the present moment. 

The best part of this blog is I can let out all my feelings and share my MM journey and other random events in my life.

So glad I am finally stable. 

A few readers (MM patients/caregivers) of my Blog get in touch with me and I am more than willing to listen and encourage them. Gives me immense happiness to know that I have made a difference to them. I hope to get more opportunities to do my bit to humanity.

 

Life seems much more meaningful now.

 


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Update on my Bone Marrow Biopsy – M Band not seen !! 23 June 2018

It is one year since I got a Bone Marrow test done.

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I was diagnosed with MM in Oct 2011 and underwent Stem Cell Transplant in Jan 2012. Since then I have been doing the  Bone Marrow Test every six months. In June last year ie June 2017 ,  my Oncologist told me to come back for the test after a year !!. Once a patient crosses five years after a Stem Cell Transplant , the Bone Marrow Test is done once a year. That was the second best thing that happened to me. The best thing to have happened was in Feb 2016 when my Oncologist said I could stop taking Chemo Medications 🙂 .

I have been taking Ayurvedic medications since more than three years and the results are good.

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The Bone marrow sample was taken last week. Reports usually take around 5-6 days . I had been a little nervous while I was waiting for the Reports , though I was confident that all will be fine.

While I was in touch with the Hospital to check if the BMA Reports were ready , I was surprised to see a whatsapp message from my Oncologist after 5 days.

He sent me the Report via whatsapp !! There was no comment from him.

I opened the pdf document and quickly scanned for the words ” M Band ” or ” M Spike”, while my heart was racing. I did find the words ” M Band not seen ” .

Yayyy !!

There was a BIG smile on my face and I immediately called Dr Suresh.

He said ‘Everything is OK’ .

I said ‘Thank You Doctor , when can I meet you’.

He said ” what for ?”

I said ‘I would like to meet you’ 🙂

I then shared the Report via whatsapp with Dr Nitin , Ayurveda . He immediately called me.

He was very happy with what the Reports said.

Met Dr Suresh this morning .

He said ‘we don’t need to do the Bone Marrow Test from now on’. 

That is the greatest thing anyone like me would love to hear 🙂

I blurted ‘What Doctor, how can we stop?!!’

He said ‘just do the Electrophoresis test once every six months. As long as there is no M Band , there is no need to do a Bone Marrow Test’

I was happy with that advise.

Wow , no more piercing of my Sternum. 🙂

He then asked me if I had any other problems.

I asked him if Neuropathy is permanent and was happy to hear that it is reversible and no where it is written that it is permanent.

Sounds good but there has not been any improvement in my condition in all these years.

To alleviate my Neuropathy he recommended Pregabalin instead of Renerve which was advised by a Physician. Renerve does help but my B12 levels are exceeding the limits which not good either. Will try the Pregabalin tablets.

He then told me there are four new drugs for managing MM , with lesser side effects , one of them being Neuropathy. He also said that Bortizomib , the drug that I used , causes Neuropathy. This is good news . 

Its more than three years since I started taking Ayurvedic Medication from Dr Nitin and almost two and half years since I stopped taking Chemo medications. Dr Nitin now wants to reduce my curcumin dosage . However I don’t wish to hurry and plan to reduce gradually.

I also sent my report to Dr Gayatri, who was diagnosed with MM way back in 2002 . She has been a guiding and inspirational force for me since last three years. She had introduced Dr Nitin , Ayurveda to me. She hasn’t been taking Allopathy nor Ayurvedic medications since last several years and is doing well.

When I asked her how she Manages , she tells me that regular Pranayama , Yoga and Meditation do help in healing.

Felt so good talking to the Brave lady who oozes a lot of Energy. She is a God send.

Dr Nitin too had reiterated that Exercise, Pranayama, Yoga and Meditation can correct DNA problems. He insisted that I should be consistent with these practices.

Right now my highest priority is Pranayama, Yoga and Meditation along with Ayurvedic medication , proper diet and regular fasting.

Time to celebrate !!


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Bone Marrow Biopsy (after a year) – 14 June 2018

Been a year since I had the Bone Marrow Test.

I took the test once every six months since 2012. However, last year in June ,my Oncologist Dr Suresh said I can meet him after a year. This test is done once every six months during the first five years after a Stem Cell Transplant and from then on it is done once a year as per the protocol. My Oncologist , being an Optimist and a Crusader told me last year that I am ‘Technically Cured’. Sounds wonderful isn’t it !!? 🙂

I have been using Curcumin , Ashwagandha and other herbal medicines since last three years. I get these Medications from Dr Nitin, Ayurveda . Since last two years , on the advise of Dr Suresh , I stopped taking chemo tablets.

The past year has been quite smooth ,  except for the Sore throat infection a couple of times. My Vitamin D levels were low and I am taking supplements to improve the levels.

The day has finally arrived.

After the Bone Marrow Aspiration procedure was completed , my Oncologist asked me if I was comfortable. Yes, he does the bone Marrow aspiration. I said , I am comfortable and he smiled and said I am his only patient who doesn’t crib or complain :). He must be kidding. He is definitely the best , he completes the process in a jiffy. It is all over in a couple of minutes , all through he would be chatting . I can’t imagine anyone else doing the procedure .

Blood samples were taken for the following tests : Immuno globulin , Electrophoresis , Bone Marrow aspiration, Chem 20.

Will have to wait for a week before the Reports are out.

Till then I plan to watch a few movies on Amazon Prime 🙂

 

as you wish

 

Take Care !!

 

 


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World Environment Day – 5 June 2018 : How to Reduce the usage of ‘Single use Plastic’ and more

What better way to celebrate World Environment Day , than by following/sharing some very useful tips about reducing the use of stuff that is choking life on our dear planet. Yes , its the PLASTIC !!

I have subscribed to a Travel Blogger who has posted an excellent compilation on ways and means to reduce Single Use Plastic and lots of other tips.

https://the-shooting-star.com/2018/06/03/world-environment-day-single-use-plastic-india/

These tips can be followed while travelling and in our day to day life too.

 


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My Blog Name : Devil or Angel

If you wanted to know why I choose this crazy sounding name for my Blog , read on….Choosing the name of a Blog is tough.

A question crops up in my mind very often. Am I an Angel or a Devil or somewhere in between. There are folks who think I am a nice person and there are those who know my darker side and may not think good about me. I also appear very stern/rigid to a lot of people :). Hence , I often introspect and this question is the foremost one that frequently pops up in my head. I ask myself what is it that I am doing right and what is it about me that is not right . At times I am devilish , at times I am like a child and there are situations where I go by instinct , good and bad . And so , when I planned on starting a blog and had to decide on a name , this is what popped up immediately. I said to myself , why not !!? I felt that the Blog name should reflect my core personality and feelings.

The purpose of this Blog is to share my experiences while I battle Multiple Myeloma . I have always felt that my innate nature is responsible for my present condition. That I had not prioritised , I was not assertive, taken wrong decisions , was impulsive etc etc. So , that is how the name of my blog emerged.

Devil or Angel

This name reminds me to introspect more often . All of us think we are doing the best , that we are always right. But each one has to put themselves in the others shoes and understand why someone behaves in a particular way and observe how we are reacting . We also have to understand how our behavior is affecting others behavior towards us..

It is highly recommended that we list the Devilish stuff that we are made up of and also the good Angelic stuff .

I have a list of my own wrong stuff which I am aware and I have successfully eliminated most of it.

I am also aware of the nicer part of me.

This name keeps a check on me 🙂

As I continue to ponder on the nature of the mind , the conscious part , the subconscious part and the pure Consciousness , the cobwebs slowly get cleared. It is a highly liberating experience when we Let Go and realize that all of us were born innocent and got transformed due to various external factors. However , we have to put efforts to unload all the unnecessary baggage, called EGO, that we carry around and put all efforts to give back to humanity and nature so as to make the world a better place.

Not to forget that we are here for a purpose and at the end of the day we have to find that purpose for which we are brought into this world.

I hope to be less Devilish and more Angelic . It is a Work-in-Progress 🙂

 

 

 

 


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Nature Therapy : Random road trip around Himayatsagar lake , Hyderabad

I love looking at various places all over the world on Google Maps. I enjoy going through the photographs that people post there. Gives a vicarious pleasure 🙂

Each time I look at Hyderabad , my home town , on Google Maps , the two prominent lakes namely Osmansagar and Himayatsagar always attract me.

Very often I zoom into the areas around these lakes and imagine driving around these places. Thankfully , construction activities are not permitted in the catchment areas of these two lakes . I see lots of Farms/Resorts around the lakes and the place looks beautiful from up above :)) . I always wanted to go there some day. That someday finally arrived . Went on Sunday .Mom too wanted to go for a long drive with the kids just before she gets her eye operated for cataract . Mom and I have this craze for exploring/visiting open farms and fields . Went there yesterday along with my Mom, niece and nephew . The area adjacent to the lake obviously has sufficient ground water and the whole area is cool , nice and green even during peak Summer which we are now experiencing.

Here are a few pics from the drive.

Spotted an Ibis, a black bird with a long curved beak.

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These women were cutting Spinach and tying them into bunches which will be sold in the markets.

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Got freshly picked Bhendi’s and Bottle Gourds from one of the owners.

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Car Dikki 🙂

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The kids had fun playing with the cool water flowing from a Borewell pipe.

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Another farm had Chukka koora, also called Khatta Palak in Hindi.

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The owner gave us some Chukka koora.

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My Nephew was excited to see Chicken and Eggs in this Poultry farm. He came back screaming “I saw eggs !! ” 🙂

We should have picked up a few dozens of Eggs too 😉

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We saw a few buffaloes which were being milked . Wanted to ask if they would sell some milk but we didn’t have any container either. Our Driver suggested we use the water bottles. We were on the fag end of our trip so we quickly gulped the leftover water and filled two bottles with fresh milk 🙂 .

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We took the road less traveled. Lots of Narrow paths leading to these fields. Would have been risky if it was  the rainy season. We did see a lot of fruit bearing trees Came across lots of farms with Mango, Lemon , Jack-fruit and Sapota/Cheeku trees.

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Thanks to Google Maps and GPS , I was able to easily guide our driver around these narrow paths . Came back home with some fresh goodies and a great experience.

Lot more areas to be explored around these lakes. Will go back for more :).

 


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Picture story from a recent visit to our Village – Apr 2018

Here are a few Pics from my recent visit to our Village near Nellore.

Free Range hens with their little ones . This is one of the most common sights as soon as you leave a city or town. The moment you see them near you , you would be tempted to rush and catch hold of one of those little ones but would fail miserably 🙂

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Another common sight is the Dry Hay Stack. Once the harvest season is completed , all the Hay is collected and shaped into this form . It is then tied with a rope, made out the hay, to protect the hay stack from the wind. Cows and Buffaloes munch on this Hay when there is no grass during Summers.

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Time to go home after grazing and playing in the fields , the whole day.

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This woman has brought her wares , fresh green leafy veggies and Raw Mangoes . She has come all the way from the neighboring village where these are grown. She carries her stuff in a cloth and an Aluminium vessel. People in the villages get to eat fresh veggies which are harvested in the morning or on the previous day. The veggies that we get in the cities , that are on the shelves of the supermarkets and sold by other friendly neighborhood vegetable vendors are from the cold storage’s and would have been lying there for days / weeks / months.

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Mango Chutney is being made in the traditional way, using a Stone Mortar and Wooden Pestle . The taste of chutneys is doubled when prepared in this way rather than in a Mixer Grinder. Good exercise for the body too as one has to sit on the floor .

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Rice balls (Rice powder + Jaggery water + Ghee ) steamed in a clay pot.

 

Time for the ducks to go home after eating/playing in the adjacent fields.

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Looking forward to my next visit 🙂