Shutterbug's Blog

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


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Status update on my MM : 23 Jan 2018

Been a while since I updated my status wrt MM.

Got the CBP , LFT and RFT tests done a couple of days ago.

All renal parameters are fine. Potassium , Glucose , TLC are also within normal ranges.

ESR : 51 ( This is expected , 0-20 is the normal range)

Hb : 10.6 (was 11 in November 2017 )

Globulin Serum : 4.0 (increased from 3.8 in November, normal values are between 1.8 and 3.6 )

This is a cause of concern.

Spoke to my Ayurvedic Doctor who felt there is nothing to be worried about. However I am not comfortable and asked him if I can increase the dosage to 3 capsules three times a day. He actually wants to reduce my dosage if possible. But I am not yet comfortable reducing the dosage right now.

I have been observing a little dip in my energy levels and was also feeling cranky during the last one month.

I had been taking 3 caps of Curcumin for almost 2 and half years since May 2015. All was well during this period and hence a few months back I was put on Turmeric. But the tests in November 2017 revealed that Globulin Serum increased to 3.8 . I was back on Curcumin 500mg 2 Capsules three times a day in December 2017. With the latest reports I feel the dosage of Curcumin has to be further increased .

Glad he agreed and I am back to my original dosage of 3 capsules of Curcumin 500mg three times a day. I will continue to take Ashwagandha , Tinospora Cordifolia , Satavari along with Curcumin . I am hopefull that my counts will jump back to normal very soon.

I shared the reports of my results with a confidante at work. She knows a lot about me and my style of working and feels that I have been exerting myself at work and it is better that I slow down a bit 🙂 . Will do something about this .

In my next set of tests after a month I will be including tests for Vit D , B12 , Uric acid and Calcium levels.

That’s all for now.

Time to take loong deeep breaths and relax :))


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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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Change in Complexion of the skin due to Chemotherapy 

A young woman from Kerala, India , came across my blog a few months ago. Her Mom is taking Chemotherapy along with Ayurvedic Medication , for Multiple Myeloma. I had received a private message from her and we exchanged information over the phone.

A few days ago she messaged me on whatsapp and asked if my complexion had changed because of taking Ayurvedic medication. We had discussed about my Ayurvedic Medication too during our previous chats.

I then told her that the change is not because of Ayurvedic Medication but due to Chemo.

Here is my own experience :

After my Bone Marrow Transplant for Multiple Myeloma  in Jan 2012, I came home and looked at myself in a full length mirror. I just couldn’t believe what I saw . I was horrified. I almost felt ashamed of my appearance. I lost 10 kgs weight and my skin was much darker. I was definitely glad and excited to be back home , alive 🙂 . None of my family members including my little nieces and nephews , uttered a word about my appearance :). I still wonder why they didn’t . Poor things would not have even recognized me. I was bald , wearing a scarf , with a dark complexion and had lost a lot of weight. 

There was a small mirror in my room at the hospital but somehow I didn’t notice that the skin was turning darker day by day. I was in the hospital for 20 days and the other side effects overpowered this effect on my skin 🙂 . 

During the next visit to my Oncologist I asked about my complexion too, among many other queries. I was told that I should not be surprised if my nails start turning black very soon. He told me that my skin is reacting to UV light and I can try and avoid being in places with lot of light. Whereas I wanted to get some Vitamin D by exposing  my skin to the Sun . This was more important to me for strengthening my bones. The complexion thing was a very minor issue among the other issues that I was experiencing just after the BMT.  I just wanted to be alive.

Over a few months the complexion lightened just a bit . The whole nail did not grow to  a dark shade but I had one or two stripes of a dark shade on the nails . The nails slowly got back to normalcy but I can still see a pale grey stripe on a couple of nails even now.

It was only after I stopped all Chemo and started Ayurvedic Medication that my complexion slowly got lighter. I stopped Chemo in Feb 2016 . I guess I am 50% back to my original complexion now.

I really don’t know if everyone who takes Chemo for Multiple Myeloma has this side effect.

 

Finally , it is important to be grateful that one is alive and nothing else matters . Work towards improving your Health , mentally and physically. Have patience and read success stories of  other patients , yes there are several of them all over the world. 

the secret

 

 

 

 


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A Success Story : A Fighter who Conquered Multiple Myeloma !!

Here is the success story of Dr Gayatri , who has beat Multiple Myeloma with grit and determination.She has been my mentor for almost two years and has inspired me and guided me to take on the fight with courage and hope.She counsels many patients and advises them about the hospitals and Doctors in the country for getting treatment for MM.

Hopefully , this story will inspire many more just the way she has inspired me.

This write-up is by Dr Gayatri herself.

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BOUQUET OF HOPE

(My fight against cancer, written in October2002)

There is a very special reason why I would like to share my story with all of you who would be reading this .The word Cancer still evokes a lot of fear and despair and people are still petrified of being identified with cancer. Even in today’s modern times, you will be surprised as to how ignorant most of us are about cancer. Most lay people associate cancer with death, a painful end. And it is for these and many others who would read this book that I as a cancer survivor would like to share my experience with.

In this era of modern medicine, there are so many who have bravely and courageously fought their personal battle with cancer and many have been successful at getting rid of it. There are those who continue to fight, never wanting to give up. Don’t you think their efforts need to be appreciated? Life is a wonderful gift to each one of us and many of us take it for granted. But when one is struck with a life threatening condition like cancer, every moment of life suddenly becomes so precious that you want to savour every moment spent with near and dear ones. There is a hidden strength in each one of us that may have not surfaced otherwise but when a calamity strikes, you will be surprised at your own display of courage and fortitude.

When I was first diagnosed as having cancer in November2001, I was surprised as to how little I as a doctor knew about my cancer. Being a paediatrician my medical school knowledge about cancer was limited and my husband and me had to do a lot of reading and Internet surfing to help us understand my cancer. Also I was fortunate that we had many friends who would bring us articles and any information they could gather about cancer. About few years ago, it was thought best not to let a cancer patient know much about his or her condition. But I feel, it is very important for each and every cancer patient to understand his cancer, the available modalities of treatment and try and avail the best that is available to you. If one decides to nothing is impossible. The idea is to never give up. 

So here, I share my experience with cancer. 

It all began in the autumn of 2001. There was no warning, for my life was to change forever.

I am a doctor by profession, married to an Air Force pilot for the last 12yrs. It was oct2001 and I was reflecting on the joys of life, thanking God for a loving husband and two beautiful daughters aged eight and six years. I had a career that I enjoyed. Life was good, quite fulfilling.  I was so much at peace with myself. Little did I know that a while from now my life was going to change in a major way.

In the month of dec 2002 I was diagnosed as a case of Multifocal plasmacytomas, a variant of multiple myeloma. Multiple myeloma is a cancer of plasma cells. In myeloma, a single defective plasma cell (myeloma cell) gives rise to the much larger number of myeloma cells which build up in the bone marrow .

Diagnoses was’nt easy, I had  a surgery for a lytic bone lesion(initially diagnosed as osteoclastoma) on my left leg (tibia) on 8thNov 2001 and biopsy reported it as “Non Hodgkins Lymphoma” at Base hospital Delhi. A sample sent to Tata Memorial reported the tumour as Plasmacytoma. Further investigations confirmed diagnoses as Multiple Plasmacytomas. Over a period of 5 months I received 6 cycles of chemotherapy. I was immobile because after surgery my leg bone had not healed ( Non United Fracture). I was still not in remission after chemotherapy and so I went through an autologous bone marrow transplant on the 3rd of sept 2002 at Army Hospital( R&R),N- Delhi. I was admitted for a total of 20days and kept in isolation in a BMT centre. This transplant according to my doctors was a chance to buy time for me to fight this cancer, which has no cure.  The key thing here is the marrow you get is your own so there is no problem of graft-versus-host disease. The experience of a transplant was very painful for me. I could’nt swallow, my throat hurt, I had no saliva and I was bone tired. I was nauseous and vomited every sip of water I tried to swallow. For about a week I  totally gave up trying to even swallow liquids. I felt lousy and had no strength to talk. I used to watch a little bit of TV  but used to tire easily. I felt I would never get out of that room. My husband kept telling me I was going to make it and kept encouraging me. My family, my parents and in-laws have been a source of immense strength to me, I could never have got through this ordeal without them.

Today 3 months after my transplant I am in remission and will have to go through another transplant,( mini allogenic transplant) very soon at CMCH Vellore, maybe in the next one month. This transplant will be my chance for a cure and I am going for it! It is so strange that there was a time when I was worried about how I would fair during one transplant and here I am going for another!

The last one year has been a real testing time for me and my family. I have been through  series of misdiagnosis and long period of immobility.  We have gone through so much. I say “we” because I believe, as much as I have suffered, my family has endured much more. It is true, love can endure all things, that marriage and commitment go beyond the good days of youth and good health. It is love alone which has helped me to understand that the vows of marriage, promising to stand by each other “in sickness, in health, in good times and in bad”, is for keeps. My sickness also showed me the spiritual path and I gathered a lot of strength and courage in meditation and in the readings of Sri Sri Paramahans  Yogananda. His teachings gave me an inner calmness and the belief that I was going to survive. Come what may, I was going to fight this cancer till the very end.  From the day that I knew I had cancer, a strange calm came over me. Of course I was very distressed in the beginning but not once have I ever questioned God as to why me?

I believe, God knew I could take this pain and I was brave enough to go through this ordeal, and also I had a very caring family, which is why he gave this to me. I have no complaints, if I was destined to suffer this pain then so be it! God knew I was strong and wanted to show great things through me. And I know He has many more great things in store for me, so I like to look positively at that.

( The following extract is a summary of the period post my allogenic BMT at CMC vellore in Jan 2003 , till 2010)

There have been setbacks after setback, relapses which never seemed to leave me. I had an allogenic transplant soon after my autologous, at CMC Vellore under one of the best doctors in the country. But I relapsed six mnths later and a DLI was done( donor lymphocyte infusion). Thereafter I developed acute GVHD and was followed few mnths later by chronic GVHD, in the form of scleroderma and hypothyroidism. Scleroderma was another testing time, that landed me with ILD(interstitial lung disease). Pranayam helped me along with Rajyoga, a healing meditation technique by the Brahmakumaris, to come out of the effects of scleroderma.It took three years to counter these effects, and in the midst of all this I also had osteomyelitis of left tibial lesion. I was advised above knee amputation but somehow I felt, my leg could be saved. So started another round of trips to TMH Mumbai and a series of surgeries after which the oncosurgeon told me he would do an amputation if i agreed. He gave me one last option of trying to get the bone united and clear it of osteomyelitis by using the illizarov technique.So Iwent for it and after two years of repeated surgeries for debridement I could save my leg, though with shortening. The period post my allogenic transplant till 2009, Oct , I used to walk with help of a walker.

After the DLI, I still did not go into remission and had a bad relapse in 2007. It was a near death experience for me then, but my trust in the Almighty saw  me through this phase too , leaving behind peripheral neuropathy as a reminder.  

My message to the many who will hopefully read this piece is, Cancer is something, which any of us can be afflicted with, but that is not the end of life. Today medical science is so advanced and a lot of research is on to find better modalities of treatment.

By strong will power we can overcome disease, but the will vibration must be stronger than the vibration of physical or mental disease. More severe the disease, more stronger should our will be to fight it. Remember, beyond every cloud there is a silver lining….I have finally reached mine….and so will you!

By              

Dr Gayatri Bhat  (MBBS, DCH)

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Dr Gayatri’s experience is one of the most complicated cases one could ever come across.

If she can then we all can.

Lets prove to the world that nothing can beat Will Power.

Thanks to her , I got the courage to chronicle my experiences too via this blog.

Thank you Ma’am .