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


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What to expect during and after a BMT (Bone Marrow Transplant) or Stem Cell Transplant

I get to talk/chat with caregivers/patients with Multiple Myeloma . Each one of them has a different set of queries.

One such patient, who was advised to go for a BMT by my Oncologist , was preparing to get admitted to the hospital and called me a few days ago.

I  first met him when he was just diagnosed and wanted to know about my condition in general.He was not ready to go for the BMT then. My Oncologist had suggested he speak to me and gave him my phone number.

The second time , he called me and he was more specific and wanted to know what to expect during the BMT ,while he is in the sterile ward .During the BMT process the patient is in a sterile and isolated room for approximately 15 days. This is a must as the patients immunity would be at the lowest and hence prone to infections.

He was worried whether there would be unbearable pains in the body, severe burning sensation in the stomach , whether he would be able to walk and other details.

This post is specifically to provide details as to what actually happens during the two weeks in the sterile room and precautions to be taken after the patient is discharged.

After the Stem cells of the patient are harvested from the patient (for an autologous transplant), the patient is moved to the sterile room. A high dose of chemo is administered to the patient via the ‘Chemo port’. All parameters are monitored every morning, which includes blood tests. For a few days the patient feels very normal and is given normal food. Around 4th day they start experiencing tingling sensations in the legs. The feet feel heavy , numb and restless. These are the symptoms of ‘Neuropathy’ (The fine nerve endings in body are affected, a side effect of chemo ). The mouth begins to feel dry and there is a mild sore feeling in the mouth. The patient is unable to eat spicy food. The digestive system gets affected as the lining in the esophagus  ,stomach and intestines become sore due to the chemo dose. Medications are given to soothe the digestive system.

During the first week , the patient’s blood counts go on  reducing , the WBC count becomes zero. Meanwhile the patient is given platelets and blood transfusions as the body is not yet in a position to generate its own cells. The patients own harvested stem cells ( our very own fresh and healthy new babies ) are given back to the patient via the port. These cells reach the Bone marrow and divide to form all the various other blood cells like Red blood cells, White Blood cells,  Platelets , Neutrophills etc .

During this period the patient is unable to eat any solid food. Food is given in the form of Fluids. A dietician visits almost every day and based on the patients condition/feedback the diet is changed.

Around the 7th or 8th day the patient’s own WBC count begins to increase. This is an indication that the Stem cells have started doing their job.By the end of the second week , the counts of all other blood cells like platelets, RBC , Neutrophils etc increase and reach almost normal levels.

The patient will begin to experience loose watery stools, nausea and vomiting.

Not to worry much.Go with the flow :))

There were times when I would be frustrated and irritated with the nurses for no fault of theirs. When they took longer time to retrieve by blood samples or did not attend to me immediately when I give a buzz etc . At one point the Air Conditioning was faulty and I created a big scene and informed that I wanted to meet the Hospital Admin staff. But they kept calm and handled me well :))

Patient feels weak and may not be able to move around the room without the help of a nurse.

It is advised to get out of the bed and walk around the room as often as possible with the help of nursing staff.

At the end of two weeks , once all counts get back to normal the patient would be able to walk on their own without any help.

A day starts with blood samples being drawn. The patient is given a bath ,dried , moisturizing cream is applied to the body and dressed. Allow the nursing staff to do whatever they would like to do. Just hand over your body to them and cooperate.They treat you like a baby. Enjoy the pampering :))

Breakfast is served . Time for medication. All medications are given through the chemo port. Lunch is served. One can watch TV. The cleaning staff do their job. Time for a visit by the doctors . Depending on the patients condition, several doctors will visit and at times they might disturb your precious sleep :).  A dietician does a followup. Watch more TV. The patient may puke a few times and visits the washroom a few times 🙂 Watch all your favourite programs and channels during these days .

I would watch Travel shows, Discovery channel , National Geographic, Cookery shows on various channels ,Bhakti channels , NDTV Goodtimes. I was least interested in knowing what was happening around the world wrt current news. There will be short naps now and then. My Oncologist said that I could use my smartphone/tablet/laptop but I had no interest in being in touch with anyone. Most of the time an IV bottle is connected and hence difficult to move.

At times I would request the nurses to stay with me and we would chat and watch TV together.There were 6 nurses in shifts and we would share our stories. I frequently wanted my feet to be massaged and the nurses would gladly do it.

The skin colour becomes darker by a few shades due to the chemo. This is when we realize that being alive is more important than the colour of the skin or the appearance :))

There was a huuuge window in my room on the 3rd floor which overlooked the entrance to the hospital. The window covered  3/4th of the wall. I would watch people go by and wonder why the world is so complex when all that matters is to be alive. Being alive itself is a reason for celebration and happiness , and everything else is a bonus :)) .

You are permitted to talk to your near and dear ones on the phone. They may be allowed to visit once or twice.

On one of the days I was allowed to  see them through a small window in the nursing station once my counts began to increase.

My family would be waiting outside the Main door of the isolated ward most of the time during the day . They would be busy arranging blood donors from family , friends and colleagues and eagerly look forward to listen to what the doctors had to say on my progress.

Every day they would see my plate of food arriving and going back without being eaten. I would feel like eating different stuff but when it was brought I was unable to take even a few bites . There is no saliva in the mouth and it becomes very difficult to chew/swallow.

I would be worried that I was unable to eat. How would my cells multiple if I dont eat ??!!

But they do , so don’t worry about it :)) . Relax 🙂

There are no pains because of the Chemo nor any other burning sensation in any part of the body.

When you are ready to be moved out the sterile ward , you can actually walk out on your own but do sit down in the wheelchair and enjoy the ride to a normal ward . It is a great feeling to be finally out in the world  :).

You will be in the normal ward for a couple of days. These few days seem like ages :)). Every hour seems like eternity. Finally it is time to go home … the sweetest place on earth 🙂

The next one month is going to be difficult when it comes to eating food. The nausea and vomiting continues . You will be given medication to reduce nausea. Continue to take fluids and protein supplements prescribed by the dietician. Ensure you meet the dietician before you are discharged.

Have patience ..a lot of patience is expected from the patient as well as the caregivers.

you-have-come-this-far-dont-give-up-now-patience-quote

The patient feels very weak . The bones are very tender and some effort is required to even turn your body on the bed. But that’s okay . Things will improve . Do a few exercises while lying on the bed. A physiotherapist will guide you during your stay in the hospital.

Take all your medications without fail. Feel free to talk to your doctor as and when you experience any problem or have a doubt.

Drink lots of water.

Do not venture out of your house for a couple of months. Since the patients immunity is low they will be susceptible to infections. Need not worry even if there are any infections. Just go ahead and get the medications. Stomach , throat , eye , respiratory , skin infections are some of the common issues that one might face.

Have patience . This too shall pass !!

this too shall pass

In a few weeks you would want to eat all kinds of stuff , but go slow as the digestive system is not yet strong .

In a few months you will be back to normal and you can go back to doing whatever you were doing.

This is also the right time to look up for information on alternative therapies on the Internet. Do you own research and you will definitely find a way to stay healthy and beat the BIG C forever.

Best Wishes !!


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Hope is Real ! World Cancer Day , 4 Feb 2016

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Rewind back to Oct 2011.

I enter this building in Apollo Hospital , Hyderabad,India for an injection.
On the building I see ‘Apollo Cancer Hospital’
At the entrance to the lobby there are banners of healthy and beautiful smiling people , a young girl with long hair and an older man saying ‘Hope is Real’.They must be Cancer patients who seem to be leading happy normal lives now . How can Hope be Real ? , what does that mean.. it is the chemo and radiation that helps people to prolong the life, i think to myself and move in.

Half my mind was in denial that I have Cancer. I shut the other half and just went about doing what I am told to do. No one around me uses the word Cancer , not even my Doctor , I mean Haemotologist. No one in the whole building ever used the most dreaded word . Hubby, Dad, Sister, brother, none of the nursing staff, no one utters the word even by mistake.Just like in the movies 😀 . Mom is totally ignorant. She appears normal . Dad must have told her that everything is OK with me. My son was totally ignorant.
Half my mind believes that I am getting treated by a Haemotologist rather than an Oncologist.The word Haemotologist stuck in my head since the day, when of one of the doctors doing rounds , comes to my room and casually mentioned that my reports are being seen by a Haemotologist. I had voluntary got admitted to Apollo to get tests done for my abysmally low Hb count. I was in the hospital for a few days when all the tests were being carried out, including a bone marrow test.

On the third day of getting admitted, the Haemotologist meets me and explains how my plasma cells are misbehaving.That plasma cells become antibodies , but the antibodies in my case are not doing their job and on top of that they dont die after a certain period , where as they are supposed to die. He makes it appear as if it is a mild problem with my plasma cells which is being rectified by giving a few injections .
I assumed that my doctor who is a Haemotologist sits in this building for some other reason and he has nothing to do with Cancer.
After a few such injections spread over two months , my doctor suggests that i shave my hair before we do the Stem Cell Transplant. No questions asked.The Haemotogist explains the whole process of the Transplant and I am excited to go through it all.
We plan a visit to Tirumala and offer my hair . Everyone knows that Chemotherapy causes loss of hair . Since I had very long hair I was advised to get a cut , but I continued to move around in denial.
That this is not Cancer but a similar kind of problem that is treated in a similar way to cancer. I was sure that this is a disease related to the immune system.That my immunity is low because the antibodies are useless.

I never ever looked up the words Multiple Myeloma for almost 2 years after my Stem Cell Transplant .
I , who immediately opens Google to learn more about anything and everything instantly over the smart phone, never had the courage to type these two words. I was reading news, accessing Facebook, Gmail, was watching cookery and gardening videos on YouTube , even looking at house plans and interior decoration, everything on the Internet but never could type those two words.
I was damn scared and shivered at the thought that I may be having Cancer but why is no one uttering that word if I have Cancer.
My Stem Cell Transplant was done during Dec2011/Jan 2012. I took rest for 6 months and joined work .
I then insisted that we should build our house , the house that we were discussing about with an architect and also drew plans just before i was diagnosed. We successfully built our house and moved in. I wanted to complete this project come what may, even if i would live in the house just for a few months. There was some doubt in the corner in my head, that I have Cancer and may not live long. I , my soul , had to leave my body in my house , come what may . That was the strong will power that got me going.
It is one and half year since we moved to our own house in which we now live.
The moment we moved into our new home ,I felt relaxed .Now that the mission was accomplished I had the courage to type those two words on Google.
The search for a cure began . I wanted to live but I didn’t believe what the people in those videos were talking about. That they got cured by following this and that method.
DEC 2014:
Come Dec 2014 and my Oncologist , yes by then I knew for sure that I had Cancer, declares that there is a relapse.
I shudder and then when he says that we can plan for another Stem Cell Transplant after 3 months, I take a breath. It’s been 3 years in Dec 2014 , since I had my first Transplant. So I may get another 3 years after I go for a second one.
I am back home and start getting mentally prepared for a second transplant. Paralelly I start scouring the Internet for more stories on getting healed and the methods of getting cured.
I see a divine blessing in the former of one Mrs Margaret , who had a detailed blog , who had MM too , and how she has been dealing with the problem for more than 10 years using Naturally occurring products like Circumin.
I read most of her posts and started taking similar medicines made by one of the famous manufactures of Ayurvedic products in India.

It’s been a year since I started using Ayurvedic medications and there is no sign of the disease and no Transplant either.
It is 4 years since I was diagnosed with MM.

Under the denial , there was a strong wish and hope to live . The statement ‘Hope is Real’ now makes a lot of sense.
It is the hope of wanting to live , the hope that one can beat cancer , a hope in Alternative medicine , a belief in what was being said by the people in those videos who said that were getting cured, a hope in the Divine, a hope that there is a way out, a hope that continuous research in Allopathy will result in a cure , a hope shown by cancer fighters like Lisa Ray who are leading a glamorous lifestyle.

Yes HOPE IS REAL!!

I hope to tell more and more people like me to have Hope. Hope is THE cure !