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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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 🙂


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7th year after my Stem Cell Transplant for Multiple Myeloma

The last six years have been the longest years in my life. Extremely grateful for being given a second chance to tread our lovely blue planet .

Been living each day with gratitude and lots of hope. Doing my best to share my experience with Alternative treatment via this blog. Have been able to manage my condition (Multiple Myeloma) successfully. It’s been 2 years since I stopped Chemo. So far so good. Was able to help and guide other patients with MM who came across my blog and got in touch with me . Gives me immense happiness.

Learnt a lot about the importance of diet , fasting etc for preventing and treating Cancer. Most importantly , I have experienced the Miraculous healing properties of Curcumin , for managing my condition. Curcumin has powerful healing properties which can treat several diseases.

Nothing else in this world is more important than being alive. Everything else is a bonus 🙂 . Yes, it does sound like I am selfish 🙂 . Take utmost care of your health and love yourself a lot. Be healthy so you don’t have to trouble your near and dear ones if you fall sick.

I am so thankful to my Doctors , family , friends , colleagues and other well wishers who have been supporting me throughout.

happy


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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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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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Use of Turmeric / Curcumin in Indian Customs and Traditions , Health and Healing , Beauty treatments

Turmeric Vs Curcumin :

Turmeric is a root/rhizome, a golden-colored spice that belongs to the ginger family . Widely used in India for different purposes. The words Turmeric and Curcumin are usually used interchangeably but Curcumin is an extract from Turmeric root, which gives the yellow color to the spice and has several healing properties. Different methods are used to extract Curcumin from Turmeric. Turmeric contains various ”curcuminoids” and Curcumin is one of them. Curcumin is a whole Pharmacy in itself and is used to treat several health conditions. Extensive research is being carried out on Curcumin in the western world for its healing properties..

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This spice has always been revered in India since thousands of years. But ,it is very unfortunate that the healing properties are unknown to majority of the current generation and the knowledge is slowly getting lost. Hopefully the research that is being carried out in the western world will bring to light the potency of Turmeric and thereby heal the world.

Here is an attempt to describe how Turmeric has been in use since centuries in Indian Customs and traditions.

Hindu Customs and Traditions :

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A few drops of water is added to Turmeric powder which is then shaped into a small solid cone . During Hindu festivals this form is worshiped as ”Lord Ganesha” , the remover of all obstacles. It is a fact that none of us  wish to face any obstacles in whatever activity we do/take up. This is a method of reinforcing our will power and also to invoke the blessings of the almighty.

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During Fridays, festivals and other auspicious events, Turmeric paste is applied on the threshold of the main entry door of the house and all other doors that lead outside the house. This ensures that insects and ants do not enter the house. Now a days this is done away with by using paints. Beautiful designs of flowers and leaves are drawn using colourful paints.

A married woman gives Turmeric root/powder along with ‘kumkum’ to other married women  (neighbors, relatives , friends etc), during festivals after inviting them into their homes. This is done as a blessing and good wishes for the long life of the woman and her husband .

Turmeric during weddings :

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Wedding preparations start with the making of Turmeric powder at home. An auspicious day and time is chosen for the event. A few women (relatives, friends neighbors) gather and use a mortar and thistle to crush the dry Turmeric root and symbolically prepare Turmeric powder.

A lot of Turmeric powder is used during Hindu weddings. There are a minimum of  5 rituals, spread over a few days , which require the use of Turmeric powder.

Haldi Ceremony is a very important part of a Hindu wedding. The bride and groom are smeared with a paste made by mixing Turmeric powder , sandalwood paste and rose-water, in their respective homes , couple of days before the wedding. Relatives friends and neighbors gather and make it a fun event.The Bride and Groom get a beautiful glow on their skin 🙂 . . This is repeated three times on three consecutive days. A natural beauty treatment instead of going to a beauty parlour or a Spa.

The bride and groom wear clothes that have been dipped in water that is mixed with turmeric powder . The cloth then gets dyed with a light yellow color.

Turmeric powder is mixed with rice which is then called ‘Akshintalu / Akshatalu ‘. These Akshintalu are used during puja and also used to bless others by sprinkling a little on top of the head of the one taking blessings who bows down and touches the elders feet.

In South Indian weddings , this rice is taken with cupped  hands by the bride and groom and  is poured on top of each others head during the wedding ceremony.

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A long thread is smeared with Turmeric paste and a Turmeric root is tied at the center of this thread. During the wedding ceremony the groom ties this thread around the neck of the bride with three knots.

 

 

Health and Healing :

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An Indian kitchen is incomplete without Turmeric powder in its spice box. Almost all Indian recipes contain Turmeric powder.Thus ensuring that turmeric is taken everyday in our diet. Turmeric also enhances the color of the dish. The anti bacterial properties of turmeric prevents food from decaying quickly.

 

Turmeric powder is Mixed in milk and consumed in order to treat coughs and colds.

Turmeric is supposed to be good for the Liver and digestion.

Turmeric is applied to bruises as it is an antiseptic.

Small balls are made with wet Turmeric powder. A few of these are consumed in order to reduce menstrual cramps .

Turmeric is a blood thinner and reduces cholesterol. Helps in controlling Blood Pressure.

It is anti-inflammatory. Inflammation is the major reason for most of the chronic diseases including Diabetes , Cardiovascular diseases , Arthritis , Cancer etc.

Curcumin induces apoptosis in tumours . It induces cell death in cancerous cells thereby stopping the multiplication of these cells.  A lot of research is being carried out and there is sufficient proof that this property of Curcumin can treat almost all types of Cancers.

Beauty Treatments :

Many South Indian women apply turmeric paste to their feet every Friday and during festivals and other religious events. Being an antiseptic it protects the feet from infections and cracked feet.

Turmeric paste mixed with other items like milk, chickpea flour etc is applied as a face mask to get rid of acne, pimples and other skin problems . It is also an excellent exfoliant and gives a glow to the skin.

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No wonder Turmeric has always been given a lot of importance in Hindu customs, traditions and rituals since a long time and is treated with piety and respect.

It is highly recommended that everyone include more Turmeric in their diet. It is also advised to prepare your own Turmeric powder instead of using the store-bought powder which is usually adulterated.

I have been using Curcumin every day since Jan 2014 , to fight Multiple Myeloma. Currently not using any other drug. Hope to manage my condition as long as I can.

~Yad Bhaavam Tad Bhavathi  : You become what you think ~