Shutterbug's Blog

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


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Post BMT struggles / care (Bone Marrow Transplant) for Multiple Myeloma

This is loong mail 🙂

In all these years i have never been sensitive to what my body was saying. But now it has become a way of life for me . To listen to it and care for it.
Prior to my Bone Marrow Transplant (before 2011), I always ignored all the signals that my body was sending.
I would suffer from frequent bouts of coughs and colds. I took antibiotics and moved on. I also suffered from frequent asthma attacks. I used inhalers and moved on. I always felt weak and weary. I was always anaemic .I grew weaker and weaker till one day I collapsed and was detected with Multiple Myeloma.

Post my Bone Marrow transplant in Jan 2012, my life did a U Turn.
In the last few years I have become very sensitive to the signals that my body sends. In fact a lot of my time now is spent in planning and taking care of the needs of my body.
I have to make note of the foods I eat . I have to avoid sweets/sugar. I avoid fried foods.I need to balance protein, carbohydrates ,fats, vitamins and minerals.
I also have to ensure that I don’t take a lot of potassium rich foods as the kidneys cannot handle. No bananas , coconut water etc .
I can eat only small portions of food as i feel full very soon.
Due to this I often feel hungry and thirsty every one to two hours and hence should always ensure that there is something to drink or eat where ever I go or during meetings at work. I eat/drink something before i go to a meeting 🙂 I have to pack a lof of stuff that would last me through out the day. I carry a big bag with breakfast, lunch, raw veggies, fruits, snacks to work.

I am also sensitive to any pain in my bones. MM affects bones. Higher number of plasma cells (the cause of my disease) cause pain in the bones. The pain is quite different from any other pain and feels as though the bones are being stretched.
I have to avoid dusty areas and if at all I unknowingly inhaled any dust i know immediately and pull out my inhaler. I also have a nebulizer at home if things get worse.. I use a face mask or keep my nose covered when i visit malls or other public places. I mostly avoid such places.
At times my eyes start itching or become reddish and there is a burning sensation and I have to make a visit to the ophthalmologist and get some eye drops. Almost every summer i end up having mild conjunctivitis.
At times I feel my nose is blocked and i have to switch on the ‘steam inhaler’ at home.

I am sensitive to any changes in my toes especially the area around and below the toenails. I started to experience swelling around the big toe nails after using Thalix for 2.5 yrs. I made several rounds to the dermatologist before she concluded this was a side effect of Thalix. I am currently on Lenalidomide since 8 months and so far so good.
I was having intermittent pain in my abdomen ,in the ribs and in the area below the ribs. The pain subsided after taking Vitamin D supplements. I need to watch out for any further symptoms.
I was suffering from back pain and i am feeling better after taking Vitamin D supplements.
I have to check my uric acid levels,creatinine, Vit D.,B12 and take necessary supplements. I was advised to reduce intake of veggies like beans , cauliflower , peas and spinach to keep my Uric acid levels low.
I have to watch my appetite and observe if there is any nausea. If so i pop a pill first thing in the morning.
Have to be careful not to eat outside food and if I do, I have to watch if my stomach is doing well in the next few days ..if there is an issue I run to the doc .
Have to make sure I am drinking a lot of water everyday. I have a password which is ‘drinkmorewater’ 😉
Have to ensure that i replenish the stock of my supplements regularly.I get my allopathy medications from a local pharmacy..some Ayurvedic supplements I get from a store which is a few km away. I order some Ayurvedic supplements  online.I get one Ayurvedic supplement from Mumbai and another one from Bangalore. Have to make the payments and inform them so that they can courier.
Have to ensure I take all the different medications at various times during the day.
2 times each day I ensure I take long breaths for 10 mins.
I meditate for 10 to 15 mins every day. I should do this more often.
I am sensitive to colder temperatures be it home office or elsewhere. I always have a sweater at work  in my drawer and in my car. Too cold temperatures and i will catch a cold.

I have to avoid staying in the hot sun as per my doctors advice. My skin is very sensitive and i cannot bear heat nor cold.
My hands and feet are 50% numb due to Lenalidomide and so  have to be very careful when I hold stuff or while walking or climbing getting down the stairs. Items have fallen off my hand and slippers can easily fall off my feet as they often do.

Looking back I feel this is how one has to actually live their life. One has to be very cautious and sensitive to the body’s requirements and should listen to and take immediate action on any symptom that appears abnormal and keeps recurring. Depending the current condition of the body one has to be very selfish and take utmost care .

Treat your body like a temple ( a holy place) and treat it with great respect and love. Give it the highest priority. Nourish it. Pamper it. Invest your time and money to care of it. The ROI is priceless. Health is truly the greatest wealth. 


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Stir fry with Baby corn, Bell peppers, Asparagus

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Wanted to have bowl of stir fried veggies. I opened the refrigerator and found Baby corn, Red and yellow Bell peppers and Asparagus. Chopped them up and tossed them for 2 minutes in a pan with a few simple ingredients and enjoyed them thoroughly.

Takes 5 min only.

Ingredients required to prepare one bowl of the veggies :

Baby corn : 6-7 pieces

Red Bell pepper : Half of a bell pepper cut into bite sized pieces

Yellow Bell peppers : Half of a bell pepper cut into bite sized pieces

Asparagus : 10 sprigs cut into bite sized pieces.

Lemon juice : one tsp

Salt : to taste

Garlic : 6 garlic pods roughly chopped

Olive oil : 2 tsp

Black pepper : powdered pepper 1/4 tsp

Preparation – 

Add oil in a pan, on medium heat,  and then add the chopped garlic.

Stir for 10 secs.

Add all the chopped veggies and increase the heat to medium high .

Keep stirring and add all the ingredients except lemon juice.

Let cook for 2 minutes on medium high and continue to stir once in a while.

Remove from flame and serve in a bowl.

Add lemon juice on the top and serve.

Instant and yummy stir fried veggies is ready !


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Result of taking Vitamin D supplements

I have successfully taken the 12 weeks dosage of Vita D advised by my physician after i went for a Vitamin D test. It was a self referral.Feeling much much better now. In fact within 3 weeks i was feeling comfortable and was also able to attend the 25th Reunion celebrations of my college and participated in all the events 🙂 . So glad i was able to make it.

Before i started Vitamin D , I was also having intermittent pain on the right side of the abdomen. My physician said we will do an Ultra sound scan if the pain persists after a month . The pain has subsided after taking the supplements.

I also had pain below the ribs after one month ie 4 weeks of Vitamin D tablets. When i mentioned the same to my Oncologist he had said that the pain could go away with the Vitamin D and that the ribs will take more time to heal. He was right and i don’t feel any pain now . I wasn’t able to sit all day at work and always wanted to lie down and go home early from work but now i am quite comfortable.

My Physician had advised me to continue to take one Vitamin D tablet every 3 months after completion of the 12 weeks.

Those little yellow chew-able tabs don’t seem to have any side effects too. I didn’t notice any.

I haven’t yet done a test to check the current value of Vitamin D in my body.

My suggestion to all is to do a Vitamin D test once in a year and based on the result, meet a physician and take their advise.

I hope to spend some time in the sun from now on 🙂 . Everyone must and should spend some time in the sun everyday.

However i do suffer from bouts of muscle cramps and toe spasms these days.The fingers on my feet get twisted often. Got to check why this occurs.

Here is a pic of a flower on my balcony which got drenched in the recent rain.

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Test for Vitamin D deficiency – Self referral

While I was celebrating the results of my latest reports (M Spike : not seen and Plasma cells < 1%) , I was beginning to suffer with back pain in the last one month. Having a sedentary job is making it worse. I am unable to sit nor stand for a long time.

I leave home at 7.30 am for work and reach home by 5.30 in the evening.

All the while ie for the last 3.5 yrs , since my diagnosis , I have been taking Calcium supplements and currently my counts are perfect. I was beginning to wonder why I am experiencing the pain .  Higher count of plasma cells definitely cause pain in the limbs and in the spinal cord but i know this is not the reason for my pain now.

I was anyway due for a regular checkup and 4 days back I went to the lab to give blood samples for CBP, LFT and RFT when the thought of Vitamin D test came up all of a sudden. I got this test included and it was a ‘self referral’. All the reading about Vitamin D in the past triggered this idea. I would be showing this report too to my physician in case the result was abnormal.

The result was alarming. My score is 5 ng/mL where as it should be anywhere between 20 ng/mL to 30 ng/mL.
Met my physician couple of days back.I also had pain on the right side below the abdomen. After a physical examination and checking my CBP,RFT,LFT and Vit D reports , my physician concluded that the pain could be because of Vitamin D deficiency as there was no inflammation of the liver. She said we can plan an ultrasound if the pain persists.. She prescribed a 60k IU  tab , one per week for 12 weeks and 1 tab every 3 months later on. She also recommended 2 cups of milk per day and also fish twice a week.

The best way to increase Vit D in the body naturally, is to expose the skin to the sun rays during sunrise or sunset for at least 15 minutes. Unfortunatey , at home, we don’t get to see the sunrise or sunset as other buildings and trees block the view. Vitamin D is manufactured by our skin and helps in calcium being absorbed in the body. Low calcium levels cause pain in the skeletal system.

I used to spend about 10-15 mins in the sun everyday, as soon as I reached office , around 8 am, before the rest of the staff arrived.
We get plenty of sunshine at the workplace. I would listen to ‘Aditya hridayam’ during this period. I stopped following this ritual for the last 5 months. The reason being increased severity of Neuropathy due to Lenolidamide . My Oncologist had put me on Lenolidamide since Dec 2014. I was unable to bear the heat of the sun and started avoiding and slowly forgot about it.

Its been 2 days since I popped in my first Vit D chewable tablet. I already feel better  😉 or am I imagining.

Here are some reasons why Vit D deficiency has become an epidemic 

http://www.vitamindwiki.com/Many+reasons+why+vitamin+D+deficiency+has+become+epidemic

Research has proved that Vitamin D is essential to prevent most cancers , osteoporosis , heart diseases and diabetes.

Symptoms and diseases of Vit D deficiency : (image courtesy http://glutathionepathway.com/)

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The solution is quite simple (image source http://www.health-fitness.com.au/vitamin-d/)

vitamin-d-food-sources

The simplest way is to expose the skin to Sun rays for 15 mins everyday. The time
required varies and depends on the time of the day , intensity of the sun , the season , the amount of skin that is exposed , the colour of the skin etc

Here is a wonderful article on these aspects and much more.

http://articles.mercola.com/sites/articles/archive/2009/10/29/how-much-sunshine-does-it-take-to-make-enough-vitamin-d-perhaps-more-than-you-think.aspx


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3D Printing – A revolution in manufacturing

I am working in the IT department of a Manufacturing company for the last 24 years. Having signed up for various Newsletters on latest developments in Information Technology , I had been coming across articles on 3D printing in the newsletters that I receive via mail.
I had come across 3D printing for the first time almost 2 years ago but in the last few months I got more and more interested in a 3D printer. All the while I assumed that these are available only in the developed countries.

But recently when I searched online for Vendors/resellers in India dealing with 3D printers I was surprised to see a couple of vendors in Hyderabad too. I was thrilled.

I wanted to share the information with my colleagues. The opportunity came in the form of a meeting conducted by the Head of our Department wherein we were all encouraged to express our ideas/queries/apprehensions etc.

I immediately put forth the idea as to whether a 3D Printer can help us in manufacturing some parts of our products. Currently all the products in our company are manufactured by machining.

None in the room were aware of a 3D printer and I was told to explore and come up with further details.

I was very excited and called up a vendor in Hyderabad and asked if they can do a Demo for us. They readily accepted and we arranged the Demo. The Vendor had brought a few small objects for the Demo and we were examined them like little kids 🙂

All the participants enjoyed watching the live Demo of a Desktop 3D Printer while it ‘printed’ a comb.

It is a beautiful technology were a 3D object is printed layer by layer using materials such as plastic, metal , ceramic etc. 3D drawings created using various 3D softwares can be converted to .stl files and given as input to the 3D printer software which is used for the final

The applications of 3D printing are numerous as complex parts can be very easily printed compared to the traditional methods.

Several parts of a BOEING aeroplane are being manufactured using 3D printers by GE.

The printers are being used in the medical field too. A lot of research is being carried out to print organs.

Houses are being built using 3D printing technology within hours.

A simple wrench was printed on the International space station (ISS) .

Simplifies store keeping and enables remote printing as and when required.

The advantage of the technology is obvious.

My boss has been encouraging me to go ahead and do a project and i am currently on the job 🙂 .


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Feeling inspired by a ‘Yoddha’.

Met Mani , a Yoddha (‘Yoddha’ means ‘a warrior’ , in this case , a warrior fighting against Cancer ) on a whatsapp group comprising of ‘Yoddhas’ . This group was created by Mr Rahul the founder of yoddhas.com.
I was sharing my good news with other Yoddhas and mentioned that I am yet to start consuming Curcumin when i saw a message from a person named Mani (name changed) who said that I can get Curcumin from an ayurvedic doctor in Mumbai.
She gave me Dr Nitin’s emailid and phone number.
But before I talked to Dr Nitin I wanted to talk to Mani and know more about her condition.
Called her and heard the voice of a very strong and bold woman who lives in Delhi.
Her story is very inspiring and I was spellbound listening to all that she went through in the last 15yrs.

Mani had an Autologous stem cell Transplant in 2001 and a partial Allogenic stem cell transplant in 2003 (Bone marrow from a donor ,her brother). She had to undergo several minor surgeries because she had lesions in various parts of the body. She later came across Dr Nipun and started using the ayurvedic medication prescribed by him.
Her condition started improving and for the last few years she hasn’t been taking any medication.
I was stunned and simultaneously excited listening to her success story.
Mani said I should talk to Dr Nitin and can also refer her name when i speak to him.
I sent a mail to Dr Nitin mentioning my condition and also listed out my concoction of self medication inspired by Margaret.
I received a prompt reply from him , suggesting I add ‘Punarnava’ to my list and also wanted me to give him feedback after a month.
Thanks Rahul , for creating the group ‘Yoddhas’

I have ordered Curcumin from BIOVEA.com and eagerly waiting for the parcel 🙂


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Drive to Shabad via Moinabad

Mom, Sis, BIL ,niece and I went on a long drive to Shabad from Kukatpally via ORR.
We took the right at APPA junction on the ORR and drove towards Moinabad . Took left turn there.
We wanted to check out  agricultural land in the area between Moinabad and Shabad.
We came across beautiful fields with flowers.Didn’t expect to see any vegetation at all as it is peak summer here in India.

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We also passed by several polyhouses.
We stopped at a vegetable field and were thrilled to see cucumbers, beans, ladiesfingers etc.

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On seeing us the caretaker approaced us and agreed to sell some produce to us.

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Dumped some veggies in the car dikki.

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Everyone enjoyed eating the cucumbers at the field.
The temps were too high.

Also came across peacocks roaming in the vast open grounds.

After the veggies break  , we drove to Shabad . Checked out a few more bits of land around Shabad we drove towards Chevella and then back towards ORR.

Came across many more polyhouses on the way back but it was getting dark and we planned to visit them some other time.


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8 Indian spices that prevent cancer – Must read

http://timesofindia.indiatimes.com/life-style/health-fitness/home-remedies/8-Indian-spices-that-prevent-cancer/articleshow/14863731.cms?from=mdr

Another good article on the same topic.
Highly recommend that everyone include one or two of the above every day in sufficient quantities so as to keep a check on those rogue cells.
Indians use these spices in almost all the preparations but in very low quantities and hence we continue to be susceptible to various lifestyle diseases. Though the percentage of people getting affected is much less compared to other countries.

No wonder Indian food is getting popular worldwide.


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Raw Mango juice – Aam Panna

A yummy summer drink prepared using raw mango is very popular in the North of India.

It has a cooling effect on the body.

Ingredients :

Raw Mango pieces – 1 cup

Sugar/honey as per taste

Water – 2 cups

Procedure :

Peel the mango and roughly chop the pulp.

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Put the mango pieces in a bowl and add water to drown the pieces.

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Let the mango pieces cook till they turn mushy.

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Allow the pieces to cool down. Use a blender or a mixer grinder to puree the pieces.

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If the mango contains a lot of fiber you can use a strainer to remove the fiber.This concentrated mixture can be cooled and stored in the refrigerator for a few days. As and when you wish to make a drink , take a few teaspoons of the concentrate , add sufficient water, sugar/honey to make a sweet n sour yummy drink that quenches your thirst in summer. Garnish with Mint leaves.

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The following ingredients can also be added as per your taste :

1.Roasted and powdered cumin seeds .

2.Black pepper powder

3.A pinch of salt

4.Mint leaves can be also be blended along with the mango pieces

Add one or more of the above as per your preference.

I prefer the plain drink.