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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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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.