My last post was in December 2021 and there hasn’t been a single post here since then. I had been posting on random events from my life during my journey with Multiple Myeloma. For some reason I began to feel that my journey till now should be available in one place and not spread out in multiple posts in this blog. That I should writing a book.
It has been 11 years since i was diagnosed with Multiple Myeloma.I had this strong wish that I should share my experiences and learnings with others in the form of a book.
Since my childhood , I would admire authors and was always fascinated about writing a book.
However, I had no clue as to how I should go ahead. I did read up on Publishing houses and the lengthy process involved in getting a book published.
Went to the Hospital, along with Hubby, for a Health check up last week. The package included Cardiac tests like ECG, 2D-Echo and Treadmill Test (TMT), Ultrasound scan of the Abdomen, Lipid profile, Bone Mass Density , Thyroid , Hepatitis B and C , Chem 20 etc.
After giving blood samples , we went for the Cardiac tests. ECG was taken and 2D-Echo was also done. I was not interested in doing the TMT because I was sure that I will fail the test. I am not a fan of any kind of exercise . Am too lazy to do any form of exercise and always find some excuse to skip doing any exercise. Whenever there is a need to walk real fast ,I feel some pain in the center of my chest. I always had this feeling that I have a weak heart, a heart that is unable to pump fast and hence I have this pain.
While I was getting up after the 2D-echo was completed , the technician tells me to go for the TMT. I looked at her and asked ‘should I go?’. She must have thought I am crazy. She nodded, I said Ok and walked out .
I had earlier read that TMT is recommended only after an ECG and 2D Echo are done to guage the condition of the heart. So, when the Technician recommended to go for the TMT without telling me about any hesitation or precaution , I assumed that things are normal. I came out and told hubby that I will do the TMT.
I went inside the TMT room and the Technician there quickly attached several probes all over my chest . These wires were connected to a flat rectangular device that was tightly strapped around my upper waist. Several wires from this device were connected to a Monitor next to the Tread Mill. A BP checking apparatus was strapped on my upper arm.
The Technician asked me if I have any pain in the knees. I shook my head and she then told me that the test will last approximately 8 minutes. 3 minutes at a slow speed, the next 3 minutes at a higher speed and the TreadMill would be slightly inclined and the last 2 minutes the speed would be further increased and further inclined. She also told me to tell her if I experienced any pain.
I start walking and felt quite comfortable for 6 minutes. I was ready for the last two minutes and was getting prepared to tell her to stop if required. I stopped looking at the time on the monitor and continued to walk. I did not experience any pain and I completed the 2 minutes too. The Treadmill was stopped abruptly and I was told to sit down on the chair next to the TreadMill. I did not like the way the TreadMill was stopped suddenly.I had always read that it is not correct to abruptly stop running or jogging and one has to gradually reduce the speed and then stop.
The moment I sat down I noticed that my heart was racing. Felt as though it would burst or it may stop. All the probes were still connected and the Technician was watching the monitor. I was scared and was angry with myself for going ahead with the test. What if I had a Heart attack now. Funny thing was that I didn’t feel my heart beating this fast while doing the last 2 minutes. It was only when I sat down, that the beating could be felt.
I was sitting and telling my heart to slow down …please slow down …. please be good and calm down …. I started taking long breaths hoping the heart will slow down quickly . Oh My God those three minutes of my heart racing was a scary experience.
Finally took a long breath and was able to smile. All the while I was telling the Technician that I had never exercised this hard.
I successfully completed the test and all the parameters were normal. Yayyy , I did it !! 🙂
So glad I don’t have to worry about my Heart any more. But I need to get back to my walking routine which I had stopped.
My conclusion : One can go ahead with the Treadmill Test without any hesitation as the Technician would know whether the person should go ahead or not. But it is advisable to have a Cardiologist around during the process.
Had read that there is an alternative method to stimulate the heart by injecting a medication, The patient would be in a resting state while the heart beat would increase and the parameters would then be monitored. This method is used for those who are unable to walk on the Treadmill for various reasons.
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 dietitian 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.
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 !!
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.
There are a lot of people all over the world who are able to manage and control chronic illnesses with Meditation. Blood Pressure, Diabetes, Stress, Anxiety , Depression and Cancer too can be ‘managed’ well by including meditation as a part of your daily routine.
My curiosity about meditation and yoga began about 15 yrs ago.
I wanted to learn to meditate but didn’t know what it was all about.
I bought books on Meditation. All the books mentioned a wonderful experience and wrote about a lot of steps and discipline that are required to reach that blissful state. I got discouraged reading all this. I even feared it , thinking I would die during meditation , especially after reading about yogis who pass on during meditation . This is called ‘Samadhi’
I continued reading up on the Internet .
I came across various methods to meditate. Some of them are ..
Staring at an object a little away from you. A flower or a candle should do.
Sitting with closed eyes and trying to concentrate on the gap between two consecutive thoughts.
Focusing on various parts of the body starting from top to the bottom while relaxing those parts of the body.
Gently focusing on the point between the eyebrows with closed eyes.
Chanting a mantra etc
I later came across various spiritual organizations that taught meditation. But, I was not ready to accept any Guru.
I continued reading and one day came across ‘Chakra meditation’.
This particular method appealed to me. I read about it several times and one day decided to try it out.I had read enough of theory and was confident and ready for some practicals :))
The experience I had was indescribable. I couldn’t discuss my experience with anyone.
During the process of meditation all the chatter in my mind had stopped. Breathing was very slow and steady. I was not able to feel my body, only a part of the face, the throat, and the breath. It was as if the body had disappeared and expanded into a balloon , this balloon had a diameter of a few meters. There was a lot of energy in this balloon.It was a peaceful state and all was still , as though time was frozen.
This was my first experience. There was no way of knowing if all those who meditate have the same/similar/better experience.The experience was good and I was happy that I was able to ”meditate” without a Guru :))
Soon all was forgotten.
One day , a few years later , I learned that a course was being held by a spiritual organization , close to where I lived. I joined the course hoping to know more about meditation. They didn’t teach any meditation but I learned Pranayama and other rhythmic breathing techniques which are supposed to improve our health and clarity in the mind.
Later on, I also did the Meditation course conducted by the same organisation. The experience was just ok . I was unable to sit for long periods with my spine erect during all those different kinds of meditation sessions. It was painful 🙂
Once in a while, I would practice Pranayama followed by Meditation. Each time my experience was different.
I have now begun to meditate regularly. So glad that I had learnt to meditate .
Advantages of Meditation :Thoughts too create havoc in the body. Meditation helps in calming the mind which in turn helps the body to relax and heal.
Clarity in the mind.
A reduction in unnecessary thoughts which drain your energy.
One feels calm and peaceful within.
Better management of chronic illnesses.
Feel more energetic.
Deep Rest. It is said that 15 mins of deep meditation is equivalent to 4 hrs of deep sleep.
Improves the immune system.
Reduction in Anxiety.
…and many more
I too had a lot of doubts about meditation dulling the mind. But NO , it helps you to be more efficient as all the clutter is out of your system and you feel more energetic.
Here is an easy method to make a beginning :
Sit in sukhasana (cross legged) on a mat on the floor.The spine should be erect.You can also sit on a chair or lean on a wall. You can use pillows/cushions to ensure your spine and head are upright.Place your open palms facing upward on your lap/knees .
Gently close your eyes.
Gently try to focus your eyes at the center of your eyebrows. Do not apply any pressure while doing this.
Start observing your breath going deep inside your lungs and also observe the air going out through your nose.
Continue to observe your breath.
If your mind wanders , try to gently push the thought away and bring back your focus to your breath. You can even arrive at a solution to whatever that is bothering you and gently push the thought away.
Continue to bring back your focus to your breath.
Sit in this position for as long as you can.You can also set a timer for 15 mins. It is okay if you are unable to sit for 15 minutes initially. Do this for as long as you can.
Slowly open your eyes while cupping them with your hands.
Initially the process seems irritating as you are unable to focus on your breath and the mind continues to wander. Regular practice will definitely help in focusing and thereby to reach a state of thoughtlessness and the benefits should follow.
The practice can be done anytime during the day. Ensure your stomach is not full , should be almost empty. The best time to meditate is before having breakfast , lunch or dinner.
Where can one learn to Meditate ?
There are several organizations that conduct regular meditation courses all over the world. You can earn from more than one and choose the one that you are more comfortable with.Take your time to accept the process. There’s no hurry.
A lot of CDs and YouTube videos are available which can help you make a beginning. Once you learn the technique you no longer need any external aid and you will be able to meditate anywhere.
Your experiences are unique to you. We need not compare with others experiences. Just go ahead and enjoy the feeling.
Practicing any art form makes the mind stay calm. These are wonderful methods to calm your mind. Any hobby is good too.
I am enjoying writing these posts and it is definitely helping my mind to stay calm.
Benefits of Meditation have been proven scientifically.