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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Herbal tea for prevention of Cold , Cough , Asthma

Here is the recipe for preparing Herbal Tea for preventing Cold , Cough and Asthma. The Tea can be taken every day.

Check out my previous post on how one can prevent/manage Cold , Cough and Asthma without having to take Antibiotics.

Cough , Cold , Allergy , Asthma : Ayurveda for Prevention and Treatment

Recipe for Herbal Tea

Ingredients:

  • Turmeric powder – 1/4 tsp , Raw turmeric root can also be used (1/2 inch piece)
  • Cinnamon – one inch piece or 1/4tsp cinnamon powder
  • Cloves – 4
  • Peppercorns – 10 or use 2-3 pinches of pepper powder
  • Coriander seeds – 1/2tsp or Corainder powder 1/4tsp
  • Cumin seeds – 1/4 tsp (optional)
  • Basil leaves (Tulsi)- 10 leaves
  • Ginger – one inch piece
  • Salt – one pinch
  • One glass of water

Not to worry if one or two of the above ingredients are not available at any point of time. Go ahead with whatever you have on hand.

Procedure:

Crush the ginger and raw Turmeric .

Add all the ingredients to the water and boil for 5-10 mins.

 

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Drink this tea on an empty stomach.

During Summer , reduce the quantity of Pepper and Ginger as these increase the body heat.


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Cough , Cold , Allergy , Asthma : Ayurveda for Prevention and Treatment

I am one of those  who are highly allergic to all kinds of dust and frequently end up with a Sore Throat followed by Bronchitis. A visit to the Doc , followed by Antibiotics and Nebulization … a ritual that was inevitable. 

I was able to successfully get over a recent episode with Ayurvedic Medication and no Antibiotics. I am extremely happy that I can now manage my problem without Antibiotics. Thanks to Dr Nithin, Ayurveda.

However, I still did not get an answer as to why only some people are affected by dust and pollution. Millions of people around us are unaffected and continue to live/work in highly polluted environments. How are they managing ?

Here is a beautiful article that explains  how and why a person ends up with Cough/Cold/Asthma. Understanding ‘Cockroach Theory’ will help in understanding how the Immune System works in our body .

https://www.practo.com/healthfeed/ayurveda-treatment-for-allergies-asthma-29041/post

This article is written by Dr Nithin ,Ayurveda .

I had to read this article a few times before I fully understood the how and why and what has to be done to prevent an occurrence of Sore Throat and Asthma.

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Here is a summary of what I learnt from that article –

Cockroach Theory : A panic reaction to a situation , whereas the solution is to respond in a calm and composed manner. An example : Customers in a restaurant get panicky and react clumsily on seeing a cockroach whereas the waiter , on whom the cockroach finally lands , stays still , is able to catch hold of the cockroach and throws it out.

The above theory will help us understand how the Immune cells in some bodies overreact instead of responding , when rogue viruses/bacteria enter our body. This overreaction results in excessive production of mucus which clogs the respiratory system. The body then tries to expel this mucus by coughing resulting in a Sore throat. The reason for this kind of reaction by the body is ‘Aggravated Pitta’ .

‘Pitta’ has to be reduced by the following methods (from the article):

  • Recipes like sesame seeds boiled in milk or pumpkin pulp roasted in homemade ghee or almond porridge, halwa etc can be taken.
  • Liberal use of turmeric either in milk or dal to be encouraged as Turmeric reduces inflammation and also breaks rigid bonds of thick mucus which can be expelled easily.
  • All asthmatic and allergic rhinitis patients should take herbal tea of ginger, black pepper, Tulsi leaves, clove, and coriander seeds.  
  • They should eat less of wheat and rice and should consume more of millet like Jwari or Bajri .
  • Once in a week all asthmatic should take Kulthi (Horse gram) dal.
  • Patients of allergic rashes can try having mixed powder of black pepper- 1 or 2 pills + ginger 1/4th teaspoon and candy sugar one teaspoon, once or twice a day.  
  • All of them should strictly avoid all kinds of fast or junk food, pickle, sauces, milkshakes .
  • They should not consume curd, non vegetarian food, heavy , fried food  at night time.
  • All asthma, allergic rhinitis and urticaria patients should religiously do pranayam, as deep breathing will reduce hyper activity and will relax smooth muscles of the air ways, thereby reducing spasms in the air ways and reduction in the episodes of Asthma. Plus deep breathing also helps in reducing inflammation in blood vessels thereby reducing allergic rashes. 

 

My Plan of Action :

I have started consuming Herbal Tea (ingredients mentioned above) . Will write a post on how I prepare this Herbal Tea.

I just bought Horse gram and looking for recipes on the Internet.

I have to further reduce intake of rice. I rarely consume wheat.

I include Turmeric in the Herbal Tea.

I avoid junk food and don’t consume curd/non-veg at night.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ayur

 

 

 


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Metabolic Profile C – Test/Reports

It’s been three years since I started consulting Dr Nithin, Ayurveda and began taking Ayurvedic Medication for Multiple Myeloma.

He recently advised me to get a test named ‘Metabolic Profile C’ done.

This was the first time I was hearing about this test. 

Checked on the Internet and learnt that it is a package of 137 tests. Here is a link.

https://www.icliniq.com/en_IN/lab-tests-at-home/metabolic/metabolic-profile-c/PROJ1009076

I glanced through the information and guessed/concluded that it is a comprehensive test to check the levels of all the various Minerals and Vitamins in the body.

This test is offered only at Thyrocare diagnostic centers in India.

At the lab , three fasting blood samples were collected and it took 2 days for the reports to be ready. I was surprised to see the bunch of printouts . The Report had 24 pages in all 🙂

Started turning the pages one by one to find status of parameters like Magnesium, copper, Iron, Zinc, Vitamin K , Vitamin A , lipid profile, Glucose , B Vitamins , Vitamin D etc etc .

Almost all the parameters were in the Normal range except for B12 and Total Cholesterol which were just a wee bit more than the normal range. ESR was high as usual.

Sent the scanned copies of the reports by mail to Dr Nithin .  He said that almost all the parameters are normal. 

He also said there is no trace of any cancer. Yayyy !!!

But what are the parameters in this test that help in detecting Cancer ??!

When I checked the above link once again , I also learnt that the test reveals the levels of Amino acids in the body. There are around 20 Amino acids in all . The levels of Amino acids indicates the Metabolism in the body. It is the Mitochondria inside the cells which produce several of these Amino acids . The Protein in our diet is broken down into Amino acids in the gut . Mitochondria is one of the important Organelles inside the Cell and it is the Powerhouse of the cell. Only healthy Mitochondria can produce sufficient Amino acids to maintain a Healthy body. Amino acids are required for each and every function in the body.

Unhealthy Mitochondria are unable to produce sufficient quantities of Amino acids and also release lots of metabolic waste which is the initial stage of Cancer. 

Is there a way to  improve the function of Mitochondria ?

Yes, by Exercise, Intermittent Fasting , exposure to the Sun , reducing consumption of Sugar etc.

Here is what Dr Nithin has to say about the ‘Metabolic Profile test’ , in his own words –

Metabolomics is the latest in understanding the process of Cancer.

Metabolic profile is for detecting the defect in Metabolism by Mitochondria, a powerhouse of the cell , which becomes dysfunctional and causes fermentation on glucose instead of oxidation, causes release of lots of metabolic waste , which is the most initial step in cancer.

If these levels are normal , it indicates good functioning of Mitochondria. Which can be further inferred that Cancer process is being stopped or arrested. “

That was a revelation !!

As per my report , all the Amino acids are within the normal range.

My B12 level is a wee bit on the higher side. I was taking one capsule of Methylcobalamin (a form of B12) every day. Was advised to stop for 6 months.

I will be continuing to take Curcumin, Ashwagandha etc.

 

 

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Celebrated the good news by going to a restaurant and ordered Molten Chocolate cake 🙂 . I usually  avoid eating cakes as the main ingredient is all purpose flour (Maida) .

 

 


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Resistance to Antibiotics and Ayurveda to my rescue.

I had been resistant to Antibiotics much before I was diagnosed with Multiple Myeloma in 2011. My frequent bouts of sore throat would not go away in spite of using Antibiotics prescribed by the ENT Doctor. He would often tell me to meet him and give feedback after using Antibiotics. At times there would be an improvement and at times I would not get any relief. When there was no relief he would give me another set of medications which I would promptly gulp down . The pain and symptoms were so bad that I would not think twice about what I was gulping.

I was diagnosed with MM in Oct 2011, underwent a Stem Cell Transplant in Jan 2012.

I continued getting these attacks and as usual I was taking Antibiotics. These attacks are always triggered due to any kind of dust. I reduced my visits to Malls, Supermarkets , clothes stores, theaters, exhibitions and other public places . But dust finds its way into my body some way or the other 😦 . There is no way I can completely isolate myself from all kinds of dust. Another trigger for an attack is eating/drinking cold foods like ice cream or any cold drink which I stopped having anyway.

Had another attack recently and this time I consulted my Ayurvedic Doctor about my condition and whether I should take this new set of Allopathic medication. He said that I should not be taking Antibiotics as they affect the Bone Marrow and that the new set of medications were Steroids which are an absolute No-No.

What do I do now ??! , I was very sick …I had a very irritating wet cough , a runny nose , had fever that went up to 102 deg and my bronchitis was also severe. I continued the nebulisation with Levolin and Budecort. I was afraid I would end up with Pneumonia. Meanwhile my Ayurvedic Doctor recommended that I do a Sinus X-ray, Chest x-ray, LDH Serum and Urine Culture . Had to wait for two days before all the reports were out. Was glad that all the reports were negative :).

Meanwhile he recommended a herbal tablet for the runny nose and ‘Kantakari Lehyam’ for my Bronchitis. This Lehyam is like a paste ..a sweet , pungent paste similar to Chyawanprash. My symptoms slowly reduced. A lot of patience was required as each painful hour went by very slowly. Took 5 days off from work . Felt like a dead person during those days and finally when I was ready to go to work I felt as if I was reborn and like a bird that just got out of a cage 🙂 .

So glad I was able to escape from using Antibiotics and Steroids, for the first time in my life.

Meanwhile my Ayurvedic Doctor also sent a ‘Mishran’,  which I am supposed to take with Warm water.

The meaning of the word Mishran is ‘a mix’ , a mix of several herbs in a powdered form, for improving immunity.

Am almost normal now but continuing the new Ayurvedic medications along with Curcumin, Ashwagandha , Satavari etc.

I am envious of people who are able to dig into ice creams and soft drinks and are able to withstand any kind of pollution/dusty environments.

Looking forward to a day when I can move around without fear of another attack. A day when I can eat an ice-cream and have a cold drink 🙂 … hmmm , I know I am asking for too much 🙂 .


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My new possessions : Traditional Indian cookware

Time to display a few cute things from my kitchen…..my new Possessions….I find them cute and beautiful … these are the Traditional Indian Cookware that I have been collecting since a year .

After a lot of googling on the Internet as to why to use Traditional cookware , where to buy, what to look for and how to use them , I finally decided to buy some stuff and experiment. I bought a few online . I purchased one from a local Organic Market and also bought another one from a local potter too. The micro nutrients from the materials used in making these cookware, make the food tasty and these nutrients are also required for a healthy body. Food gets cooked faster in these cookware.

Here they are:

My Cast Iron cuties :

Appa Chatti This is the cutest one. Quite heavy .

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This one is actually used for making Appams but I cook everything except Appams in this :). I use it to cook a small quantity of veggies for making chutneys (roti pachchadi). It also comes in very handy for preparing Tadka . I stir fry some soaked beans/lentils for a quick evening snack. I sometimes use it for making a small quantity of Aloo fry , Okra fry brinjal fry  etc as the size is small.

Dosa Pan Love the pan . It now has a smooth finish just like a non-stick pan. Requires very less oil for making dosas. Dosas cook quite fast and are tasty too compared to those cooked in a non stick pan.

Skillet This one is also equally heavy  .

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Am yet to start using this one. I see myself preparing curries , vegetable fries and maybe chicken fry too. This is being seasoned right now.

All of these are very heavy and have to be handled like lil babies, so as not to drop them on the floor or on your feet 🙂 . Cast iron products are brittle and can break if dropped on hard surfaces and in turn break your floor too and also the bones in your feet :). Got to be very careful.

Clayware :

Clay Pot : I have been cooking almost everyday in this pot, on a gas stove top.

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Usually , in rural India , these pots are used for cooking using firewood as fuel. After reading several reviews about using them on a Gas stove top , I went ahead and bought this one at an Organic Farmers market in the City. Very useful for cooking Dals ,Sambhar and Pulusu. 

Kadai : Once I started using the Clay pot and got the confidence I started eyeing one potter by the road side, close to my place of work. This woman had a variety of clay utensils. Water Jugs , Curd pots, Pots for curries in different sizes,  a flat thick  pan with holes for making Phulkas , kadais . I bought this Kadai.

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A kadai is much deeper than the Appa chatti . I have been cooking all varieties of  vegetable fries using this.

This type of Clayware is very light in weight and have to be handled carefully. They will break into pieces if dropped on a hard floor.

Stoneware: 

Kal chatti : 

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This is my latest possession. In the process of seasoning.

I have started bragging about my possessions and experiments with recipes to my family , friends and colleagues.

Cooking using Non-stickware , Ceramic ware,  Stainless Steel or Aluminium is no big deal. But when it comes to using traditional cookware one should first appreciate the benefits of cooking in these types of cookware and fall in love with them 🙂 . Next step is to learn how to season these types of cookware . Once the pots and pans are seasoned ,you are ready to start cooking . This is not the end of the story 🙂 . One should also know how to clean and store them so they last long and are ready for the next recipe. The only downside is that these have to be handled carefully.

I bought the appa chatti , the skillet and Kal chatti  online from villagefair.com and peacockcolours.com .

Go ahead and revive the traditional way of cooking. Eat tasty food and also stay healthy.

Happy cooking !!