How Far to Heaven?

“If you're going through hell, keep going” 

~Winston Churchill

After a sleepless night, accompanied by my mother and twin sister, I drove down to Batra Hospital, New Delhi for my first chemotherapy on 11^th April 2006.    My surgeon had warned me long back that surgery was not even one tenth of cancer treatment.  The worst was yet to come in the form of chemotherapy.  When I reached the hospital, I saw my physician (Dr Dinesh Pendharkar) chatting and laughing away to glory with his colleagues.  My chemo was just another chemo for them and I just another patient.  It took me a minute to come to terms with their sense of humor at that hour.  I realized later why oncologists crack so many jokes and talk so much with their patients.  It keeps them distracted from the troubled and painful faces surrounding them, the anxious eyes looking up at the doctors in search of hope and sympathy.  Dr Pendharkar’s team knew me well and welcomed me with a smile.  I too smiled back, completely forgetting the cause of my presence in the hospital.   I was directed towards Day Care Unit, while my sister Nita went to get the medicines.  An old lady walked in confidently towards the bed next to mine.  Feroza was alone in the hospital.  Her son came in only for some time.  I was shocked at her comfort level shown though she was all alone.  She placed her bag full of food and drinks on the table and said, “I always lie on this bed for my chemo.”  I was too nervous even to say hello.  Her hands moved with the swiftness of a routine job.  She was friendly with the nurses and knew them by their first names, she enquired about their welfare with a touch of care in her voice.  The nasty cancer cells had nestled in different pockets of her body compelling her to become a ‘regular customer’ of the hospital.  She was brave enough to talk of her complications and recurrence without shedding a tear or a quiver in her voice.  I was speechless.  I sat listening to her story digesting only half of what I heard.  She instructed me on what to eat, what precautions to take, enlightening me on DO’s and DON’Ts during the long period of chemotherapy.  This lady taught me the essence of life in a very short time – to be cheerful, positive and strong no matter what comes your way.  Throughout her own chemo she was busy chatting on her cell phone, snoring and taking care of us every now and then.  When drugs began flowing down my veins, I could feel instant heaviness on my forehead, twitching in my stomach and fatigue.  But every time I turned around, the sight of Feroza, smile on her face and her caring words revived me with strength and courage.  I was assured in my heart that I would be able to cope up too.  Little did I know then what physical and mental torture lay ahead of me in the hours and days to follow!

When it was time for us to leave, Feroza was still taking chemo as casually as in the morning.  She gave her telephone number asking us not to hesitate in calling her if we needed any help.   On our way back from the hospital I was too exhausted to talk, though I tried my best to remain normal.  The summer sun shone bright.  My sister thought a drink of coconut water would protect us from the raging heat.  I too looked forward to quenching my thirst.  But the moment I took a sip, I knew I was going to be sick.  I closed my eyes wanting to reach home as soon as possible.  Many people came to visit me that evening.  I didn’t have the energy to move around but having someone to talk to was great.  I didn’t want to be alone in the room.  We all thought I would be spared of nausea that is so much a part of chemotherapy.  But by dinner time I was proved wrong.  One bite of food sent me rushing to the toilet to puke out the red drugs that had been injected into me during chemo.  I could neither touch food nor have a sip of water.  Everyone at home became nervous.  My sister called the doctor a couple of times, informing him of my state every hour.  I had fever by night.  Feroza too acted as SOS for she gave advice and tips that no doctor could ever give us.  Nausea and vomiting persisted for two days.  I could barely walk, couldn’t bear the smell of even the best eateries, just wanted to rest all day long, while at night I could hardly sleep.  Once the effect of chemo drugs on my body reduced, I became well and felt good enough to go for walks, do anything for that matter.  Similar pattern prevailed after each cycle of chemo. 

Each chemo was to be given at a gap of three weeks, reason being that due to the strong action of chemo drugs white blood cell (WBC) count reduces in the body.  It   can be redeemed only by proper nutrition within a week to ten days.  Perhaps nausea and vomiting are caused due to the retaliation of cancer cells towards chemo drugs.  The next cycle of chemo can be given only if the WBC count lies within the right range.  Hence CBC test is compulsory before each chemo.  Blood could be given only from my non-operated arm i.e. right arm.  If by any chance the blood counts remained low then I would have to wait longer and go for blood test again after two three days.  Hence I decided to eat well, have lots of fruits, ice-creams and chocolates (as per doctor’s instructions), without bothering about putting on weight.  Going to the pathology lab for blood test became a nightmare.  I would try to find excuses believing I was fit enough to go for chemo even without a blood test.  But there was no way out, as doctors wouldn’t entertain me without prior CBC test.  Fortunately I didn’t face any such issues and never had to postpone my chemo. 

The veins on my right hand had turned black and the whole arm hurt due to endless pricks on it.  By the end of 4^th chemo my arm was dark, thin and ugly.  All the nurses knew me by then.  I hated to wait in the pathology lab, every time I went there I would be in a hurry to get out of there.  The irony was that my left hand above the elbow hurt all the time because of the removal of nodes from the armpit (24 nodes had been removed).  So the movement of left arm was restricted, I had to do regular exercise to keep it in shape.  While the right arm hurt much because there was no place left for injections.   I would try to keep my hands raised mostly during the day.  The only way of getting relief from the pain was by moving my left arm or rotating both hands vertically.   Though I faced those hard times with a broad smile, truth is that it was not easy to pass those seven long months of chemotherapy.

Chemotherapy drugs have a vital role to play i.e. to kill cancer cells, which is not so easy.  It is a known fact that if a single cell remains alive in any part of the body, it can multiply into millions more in no time.  Hence these drugs need to be stronger than the abnormal cells.  It is no big deal that normal good cells in the body cannot withstand these drugs and get killed in the process too. With each chemo my physical appearance deteriorated from bad to worse with only one positive tag – the unexpected rise of hemoglobin.  I attributed it to regular intake of iron tablets, fruits and vegetables.  Initially I was made to believe that I would have to take 6 cycles of chemo, but by the end of 4^th doze my physician ‘cheated me’ saying I had to take 8  cycles.  My mind simply refused to register the fact that he was doing all this for my sake.  I was the one to be benefitted out of the treatment none else.  I was given 8 cycles of chemotherapy– 5 of one type i.e. CEF and 3 of the other type.  After the last three cycles of chemo I did not get any vomiting or nausea, but had to take a subcutaneous injection soon after the chemo, to keep my WBC high.  Getting injections on my right arm was dreadful, not only for me but also for the nurses, who could not find a vein easily to take blood.  I always entered and left the pathology smiling but every time I would try to find some excuse for not going there, wishing there was some way of avoiding the blood tests or the other injections.  The year of treatment, 2006-07, remains embedded as a bad dream in my life.  But even today I have high regards for all the doctors of Batra Hospital, New Delhi, who took such good care of me, especially Dr D. Pendharkar, for planning the course of treatment wisely. 

Chemotherapy has its own side effects and it did not spare me either.   Soon after 2^nd cycle of chemo my hair started falling, so one day I got my hair chopped off.  The hairdresser was not sure if he had heard right or not, he was hesitant to remove all my hair.  Even I got scared when I looked into the mirror in front of me and shut my eyes.  At home kids started writing on my bald head.  I tried to cover my hair with a scarf, but couldn’t go on for long as I felt terribly hot, moreover the scarf would slip off every now and then.  Slowly I got used to my baldness and didn’t mind it too much either.  At many places people even took me for a foreigner due to my new look.  It was only a couple of months after my treatment that I came to know how horrible I had looked bald headed.  Once my husband’s niece had come to see me and I received her at the entrance.  She seemed shocked but didn’t say anything then.  Later she told me, “Mami, when you had opened the door I thought some old man was at the door.  Then I realized it was you.”   No one at home made me feel conscious about my looks without hair.  We would take it lightly, like the party incident.  We were getting late for a party.  My sister’s friend called up asking when we would reach.  I told my sister, “Tell your friend Rita is taking too long to comb her hair” and we all had a good laugh at it.  With this note I would like to emphasize that hair loss is not such a big side effect of chemotherapy, it is not harmful in any ways and should not become a cause for worry.  Hair grows back again after the treatment is over. 

During chemo mostly when I was well and healthy I would forget that I was undergoing a treatment unless someone spoke about it.  But I was constantly reminded of it by small sudden tragic incidents like once we had gone for dinner to a friend’s place.  I was perfectly fine and looking forward to enjoying a grand dinner, when all of a sudden I started puking, without any control over myself.  Nobody could guess why this happened as I had not touched any food till then.  Obviously I could not eat anything after that.  I take this opportunity to thank all my relatives and friends who tolerated me day after day for almost a year during my chemo, with my deadly looks, outbursts of frustration and sudden fits of nausea and puking.

The side effect of chemotherapy that bothered me for many years was getting ‘hot flashes’.  One moment I was cool and comfortable, the next moment I would feel terribly hot.  Even in winters I would feel so hot that I could not wear woolens even while I saw others shivering in cold.  I guess taking eight cycles of chemo is not a joke…the action of these drugs is reflected in the form of hot flashes.  They faded away with time and their frequency has decreased to a large extent now.  Sleeplessness was another side effect that bothered me a lot.  I used to be wide awake all night and feel sleepy during the day or early in the morning.  It would ruin the day and I could not concentrate in anything I wanted to do.

One of the finest parts of that period was my association with Donna Cushman of USA.  We got introduced through a common friend and started sharing our experiences online.  The best part about Donna was that she wrote lovely mails just before and after each chemo, keeping my dates in mind.  Her mails always distracted me from the roughness of chemo and brought a smile on my face.  She shared her own experience of going though chemo with me.  In short, she took good care of me during my tryst with this awful disease without having met me or knowing me personally.   Later on, when I got the opportunity to attend an International Conference of National Breast Cancer Coalition (NBCC) at Washington DC, I flew down to Florida to visit Bob and Donna.  They met me at the airport and we clicked instantly as if we had known each other since ages.  In fact I am fortunate to have good friends, who stood by me throughout my treatment.  Lalita and Negi always accompanied me to the hospital and went out of the way to keep me happy.

   

My wonderful friends Bob and Donna

With Donna at her p[ace in Florida


What is chemotherapy?

Chemotherapy or ‘chemical treatment’ has been used since the days of ancient Greeks.  Chemotherapy is a kind of treatment that uses drugs to attack cancer cells.  It is called a "systemic treatment" since the drug, entering through the blood stream, travels throughout the body and kills cancer cells at their sites.  Chemotherapy works by stopping or slowing the growth of cancer cells, which grow and divide quickly.  But it can also harm healthy cells that divide quickly, such as those that line your mouth and intestines or cause your hair to grow.  Damage to healthy cells may cause side effects.  Often, side effects get better or go away after chemotherapy is over.

What is chemotherapy used for?

Since cancer is a word used to describe many different diseases, there is no common treatment for all its different types.  Chemotherapy is used for a variety of purposes:

Ø  To cure a specific cancer – chemotherapy can be used for a complete cure.  Often it is given in combination with radiotherapy. 

Ø  To control tumor growth where cure is not possible - When a complete cure is not possible, as in the case of advanced cancers, chemotherapy helps to shrink the cancer and reduce the symptoms.  This helps to usher in better quality of life besides increasing the chances of survival.  This mode of therapy is known as palliative chemotherapy.

Ø  To shrink tumor before surgery or radiation therapy - Sometimes when a tumor is large, there occurs a need to reduce its size before surgery.  Chemotherapy is then employed to reduce the tumor size, and this is known as Primary Chemotherapy or Neo-Adjuvant Therapy.

Ø  To relieve symptoms such as pain

Ø  To destroy micro cancer cells that may be left behind after the known tumor has been removed by surgery.  This is called Adjuvant therapy.  It is given to prevent the recurrence of cancer.   

Chemotherapy may be given at home, in a clinic or in a hospital. The frequency of chemotherapy can be daily, weekly, monthly or an on-off schedule depending on the type of drug, the body's response and the type of cancer. The chemotherapy is decided on the basis of the type of cancer. The dosage is calculated on the basis of the patient's body weight and the drug's toxicity.  At present, more than 50 anticancer drugs have been discovered.  They are used in several ways:

• Mono-therapy or only one drug
• Combination chemotherapy or a group of drugs which work together
• Combined modality or chemotherapy along with other treatment such as surgery and radiotherapy

The drugs are delivered to the affected cells in the following forms:

• Oral (tablet form, by mouth)
• Intravenous or Intramuscular (injected by needle into a vein or muscle)
• Intrathecal chemotherapy (injected through a needle in the back)

Since chemotherapy also affects normal actively dividing cells such as those in the bone marrow, the gastrointestinal tract, the reproductive system and in the hair follicles, most patients experience some degree of side effects, which may include any or all of the following:

• Nausea and vomiting: This is a common side effect of chemotherapy. It can be controlled with anti-sickness drugs (anti-emetics).
• Fatigue: Chemotherapy affects different people in different ways. Some find they can lead fairly normal lives during treatment, but many find they become tired and have to take things more slowly. It is advisable to be careful not to over-strain one-self. Taking short naps may help.
• Hair loss: This is the least harmful side effect, yet can be the hardest to bear. The use of a cold compress around the scalp when taking chemotherapy helps stop hair loss to some extent.  Hair will grow back surprisingly quickly once treatment is over.
• Susceptibility to infections: When the drugs act on cancer cells, they also destroy normal cells including white blood cells, which fight infections. When white blood cells are in short supply, the body's immune system is weakened making one susceptible to infections. Any fever should be reported so that your doctor can prescribe antibiotics.
• Decrease in blood cell count: During chemotherapy, you may become anemic. Regular blood tests are done to ensure this does not happen. If necessary, blood transfusions are given.
• Mouth sores and ulcers: Some chemotherapy drugs cause sores and ulcers in the mouth. Regular use of a mouthwash is very important. 
• Lymphedema: It is a swelling caused by collection of lymph in the affected limb (leg or arm).  Though there is no cure of lymphedema, measures can be taken to keep it under control (for details refer to chapter IV).         

During chemo I tried to find my own way of dealing with the side effects especially nausea and vomiting.  After two cycles I realized that I could stay calm if I did not eat anything the first day.  So I would have a very light breakfast before leaving for the hospital and just lie in bed after returning back.  I would not even have water.  During the day I would simply rinse my mouth with water.  I had seen Feroza eating even during chemo, she had even advised me to keep eating as I would be very hungry, but I observed that I could not eat properly for two days after chemo.  That helped me get over vomiting to some extent.  Though by then I had started feeling some smell in everything related to the hospital – my file containing hospital card and other papers, my clothes and even my room – all smelled of chemo.  I could not stand that smell.  I would start puking every time I entered the hospital, even before chemo was given to me.  Here I would like to list some precautionary measures that one can take during chemo period:

§  Drinking plenty of water reduces the toxic effect of drugs; 

§  Fresh juices and soups help in good digestion and increase appetite;  

§  Have 5 fruits and 5 vegetables every day, though in small quantities, but avoid citrus fruits since they may cause acidity;

§  Fruits like papaya and apple help to keep bowel movements under control, pomegranate and banana increase hoemoglobin in blood, watermelon is good for hair growth because it contains folic acid;

§  Taking short naps during the day – sleeplessness is very common at nights during chemotherapy hence it is good to take rest during the day;

§  Regular walks, exercises, pranayama and yoga reduce stress and sleeplessness;

The darkest tunnel of my life was the period of chemotherapy (April to September 2006).  I had kept my mind occupied in different ways, so as not to go into depression.  Throughout chemo I used to write about each and everything I experienced.  Every evening I would see Jug Suraiya walking alone or with his wife Bunny.  One day when I was through with one article I requested him to come and read it.  Immediately, without any hesitation he came with me, read the article and appreciated it.  Eventually, with my last chemo, I was rewarded with publishing of my article ‘Coping with cancer’ in Times of India.  It filled me with instant pride and happiness.  It also gave me courage to write more.  Till day I have been writing to spread awareness of breast cancer.  Through this blog I wish to show my gratitude to Jug Suraiya for inculcating the spirit of writing in me.

“All roads lead to heaven!”  Perhaps they do.  I experienced it through those months when I went through hell, thinking there was no end.  But I did not stop, I kept going at my own pace.  I knew there was no escape.   At the end I learnt to live, enjoying small moments and forgetting the darkest patches.  I know now where heaven is.  Perhaps I am now capable of creating it wherever I am!

How far to heaven?  

Just open your eyes and look.  
You are in heaven. 

-  Sri Sri Ravi Shankar