Shutterbug's Blog

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


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The Mask

mask cartoon

Nothing shady about the title 🙂 . Nothing to hide 🙂

Am sure I reminded you of ‘The Mask’ and Jim Carrey 🙂

This post is all about how the ‘Mask’ has become one of the most important accessories  during the last 9 months.

My ‘Mask’ is now a constant companion from the moment I step out of the house.

Having struggled with frequent Sore throat problems and dust allergies followed by Antibiotics all these years, I wanted to check if  a Mask would help me stay away from these issues. I invariably end up with a Sore throat if I inhale any kind of dust .

Before I went ahead and bought a mask, I did some research on the internet on the varieties of masks that are available.

Long ago I had read about how an N95 mask can protect the wearer from viruses .

I also learnt the difference between a Respirator and a Surgical Mask.

A Respirator protects the wearer from the environment. Learnt that the N95 Mask is a Respirator.

A Surgical Mask protects the Environment from the wearer of the Mask, so that the wearer of the mask doesn’t transfer any unwanted viruses/bacteria to others.

Bought one N95 Mask that appeared simple , lightweight and comfortable to wear and not too expensive , on Amazon. There are several varieties that one can easily buy online.

Unfortunately I was unable to wear this beyond 5 minutes. Felt suffocated and it was too tight on my face.

simple respirator

The above image is a simple N95 Respirator that I tried.

With the bad experience of wearing an N95 mask , I wanted to try the surgical Mask . If a Surgical Mask can stop letting viruses go out while we breathe/talk then obviously it can stop viruses from getting in too 🙂 . With this conclusion I bought a few normal surgical masks. These are very light and so comfortable to wear. Hardly any suffocation. I liked wearing these even if it meant that I appeared like hospital staff who forgot to remove the mask after leaving the Hospital 🙂

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I now keep a bunch of these in the car seat back pocket.

I began using these when visiting public places like Supermarkets, farmers markets, Malls and Movie theatres . Initially I did feel a little awkward and tried covering my Masked face with my Dupatta/chunni.

A Dupatta/Chunni is like a long scarf worn over the shoulders.

Very soon I felt the Dupatta was restricting my head/facial movements. Stopped using the Dupatta and felt relieved and free. It is not my problem if people are uncomfortable looking at my masked face 🙂 🙂

There are times when I travel through dusty roads and in spite of sitting in a car I felt I should be using a Mask . All the vehicular pollution was making me depressed. I was sure that some of the polluted air was entering the car too. I didn’t want to take any risk of being exposed to any kind of dust.

Very soon I was wearing the Mask everyday on my way to work and back home even while seated in the car :).

I soon started noticing the benefits of wearing a Mask. I haven’t experienced a Sore Throat and Bronchitis issues ever since. It’s been 8 months since I started using a Mask.

I always carry a few Masks in my handbag too. These are disposable Masks which I discard every 2-3 days. Initially I was buying Masks in 10s from the local Pharmacy. Very soon I bought a big box of Disposable ones online and now I don’t have to worry about running out of them. They are very affordable and effective.

I wish more and more people begin using these Masks thereby protecting themselves and also  not transmitting viruses to the environment and those around us.

A lot of men and women in all the cities in India are using Handkerchiefs , Dupattas/ Chunnis to protect themselves from pollution. I sincerely wish that those to see me will be inspired to use these disposable masks  🙂


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My Kitchen Garden

Rains are finally here and I am excited to do some serious gardening. I do not have a lot of space for plants ,but I hope to make maximum use of the available space and will be using containers too. I will also be using home made compost and pesticides. Basically trying to grow the organic way 🙂 .

I got a few Chilli saplings from an Organic Store that I visit often. I was surprised to see a few chilli saplings sprouting on their own in my little patch. A few dried/ripe chillies from my chilli plants in the previous season must have got into the soil and were hiding there till the right moment 🙂

Removed the whole Mint patch that I had and planted fresh stems from a bunch of Mint that I got from the store. The previous patch was getting sparse and started drying up. I harvested the leaves several times during Summer.

My Malabar Spinach is growing well. I grew them from the seeds of a lone plant that I had. I have already harvested the leaves twice and is ready for harvesting again.

I successfully made my first batch of Organic Compost during the recent summer months. I have started using this compost for my plants. Feeling good .

Thankfully my plants are not infected with any pests as of now.

I also put a few pieces of ginger and Turmeric in the soil. Got to wait and see how well they do.

I am also experimenting with Coriander cuttings. Replanted a few root cuttings from a coriander bunch that I got from the store. Growing coriander from seeds is a long and slow process. Hope this trick works though I am not confident it will work. Will probably sow the seeds directly in a couple of days.

I sowed seeds of Bitter gourd , Ridge gourd , Snake gourd and cluster beans . I see that a few seeds of cluster beans have sprouted , the rest haven’t . Don’t really know the reason. Either the seeds are not good or I watered a lot. Will continue to sow them again and again until I succeed.

Also sowed a few seeds of Khatta palak (Hindi) or Chukka Koora (Telugu) .

Will also sow Fenugreek/Methi seeds in a day or two . These seeds sprout real fast.

Watching a seed sprout,  the first leaves , the budding , the flowering , the fruits/veggies growing bigger and finally the harvesting , all the activity makes me more energetic . I feel like I am absorbing Energy from nature. I look forward to the next morning to see how they are growing. There is an underlying hope when you are into Gardening . No wonder my Doctor told me to do some Gardening way back in 2012 🙂 . 

That’s it for now. Will post pics of how these babies are doing , in a few weeks.

 


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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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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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Recalling Memories of Dec 2011

memories

It has been 6 years since I underwent Stem Cell Transplant for Multiple Myeloma. It was in Dec 2011 when I was ushered into an isolated , sterilised , spic and span room where I would spend 15 days all alone.

A room where I would be reborn 🙂 , where my healthy Stem cells would be put back into my bloodstream which in turn would produce fresh and pure blood cells.

I spent Christmas (2011) and the New year(2012) in this room . I had the company of Doctors , Nurses and housekeeping staff who were like family and I would look forward to meet them and chat with them.

Felt too weak to sit by the huge glass window which overlooked the front porch of the building . I had to take the help of a nurse to take a short walk around the room.

Spent my waking hours watching my favorite shows on TV. I kept switching between Cooking , Travel and Religious channels .

Each morning my blood samples were taken and I eagerly looked forward to the reports which would arrive in a couple of hours . The counts of various blood cells would reveal how well my Stem cells were functioning.

A lot of yummy food would be served but it was difficult for me to swallow as my digestive system went on a strike 🙂

I patiently waited for each day to pass. My doctor promised me that he will send me home for Sankranti (a Hindu harvest festival which is celebrated around Mid of January every year ).

Since then , each year around December/Jan , I become nostalgic .

I made a lot of resolutions during those days 🙂 , all that I would do and not do. I have been quite successful with most of the do’s and don’ts 🙂

Feeling very blessed and grateful as another memorable year is passing.

 

 

 


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Road trip from Hyderabad to Kavali

Time for my yearly sojourn to Granny’s village near Kavali. From 23 Dec 2017 to 27 Dec 2017.

Drove from Hyderabad to Kavali via Nalgonda-Narsaraopet-Chilakaluripet-Ongole.

 

hyd to kavali

Started at 7am and planned to have breakfast at Village Aharam , an organic restaurant which is around 20km after exiting the ORR. We saw huge crowds  and so decided to go to NGrill resto which is 50km from the ORR. This was equally crowded and had to wait for a table.

This stretch is a busy one , with lots of people driving between Hyderabad and Vijayawada and prefer to have breakfast in one of these places.

Stopped for lunch after crossing Narasaraopet . Found a kachcha road on the left and parked under a tree.

A pleasant drive with all the greenery and great weather. This time of the year is beautiful for travelling by road. Excellent roads especially the stretch from Chilakaluripet to Kavali which is part of the National Quadrilateral. It is an 8 lane express highway  , maintained beautifully and is as good as any interstate highway in the USA and other developed countries. Thanks to our erstwhile Prime Minister Mr Atal Bihari Vajpayee , we are able to drive on such roads in India.

We drove through a variety of fields . It is the season for various crops like Chilli , Cotton , Tobacco and Paddy during this time of the year.

Reached Kavali by 4pm. A non-stop drive would take 7 hours.

Life in a village is like life on another planet . They have their own set of joys and challenges.

Here are a few sights along the drive :

A Marigold field.

The Krishna river near Miryalaguda. The left bank of the river is in Telangana and the right bank is in Andhra Pradesh.

There is a Restaurant above this Toll gate.

Following pics are from our village :

 

Paddy fields.

Spent a few days in our village which is 5km from the Bay of Bengal. The population in the village is around 500 . Each time I visit , I  see a few developments in the village . One of the road leading to the village is being widened as a small harbour is being developed around this part of the ocean . Lots of Autos in the village now . The erstwhile Bus has been stopped due to increase in the number of Autos. A water tanker supplies water to every house in the village for washing/cleaning  purposes. There are no water supply yet, though pipelines have been laid. Filtered drinking water is also supplied in 20 liter plastic drums from a water treatment plant for a decent price. The underground water in this area is salty and not fit for drinking. There is just one well on the outskirts of the village which has sweet water. One of them in the village has bought a Car and an Air Conditioner. The first signs of urbanisation in the village 🙂 Sign of prosperity .

Recently TTD has started construction of a Rama temple in the village.

IMG-20171004-WA0015Smartphones are being used to check weather conditions , levels of water in the surrounding lakes as the irrigiation is through canals . They also check information about government schemes.

Enjoyed fresh unpolluted air and fresh food. Started back on the 5th day at 9am and reached Hyderabad at 5pm. Had our packed lunch under a huge tamarind tree . Had Tea at Vivera restaurant near Narketpally. One can buy some fresh veggies too at this place.

Back to the hustle bustle of the city…as we enter the Financial district in Hyderabad …

Till my next visit…..