Life is what happens to us while we are making other plans…

THE COINCIDENTAL DIAGNOSIS

It was the year 2009. I had not been feeling well for few months. Fatigue and unexplained  diarrhea troubled me. One  day as I was applying moisturizer on my neck I discovered a big hard lump sitting little above my collar bone. A  FNAC was performed, the results of which said I needed an excision biopsy for further investigation.

WHEN I LOST MY VOICE

We walked into R&R  hospital ( my husband is an Army Officer) and the Onco-surgeon said that I had to be operated immediately. During the  surgery my vocal cords were accidentally touched because of which  my voice turned  hoarse. I was advised complete voice rest. My voice sounded more like a croak of a toad. I CROAKED! I suffered  permanent residual  damage to my vocal cords. In simple word, just like a body gets tired, my voice gets tired if I talk for too long. I can’t raise my voice as the pitch of my voice is limited. If I speak loudly my vocal cords hurt and my voice becomes hoarse. In the lighter vein my voice control is in an auto cut mode.

THE DIAGNOSIS THAT CHANGED MY LIFE FOREVER:

The  biopsy of the left thyroid gland confirmed the malignancy. I was diagnosed  with a rare form if thyroid cancer –  follicular carcinoma with Hurthle cell changes and  hashimoto’s thyroiditis. In simple words  “ I  HAD CANCER”. The tumor had broken the wall of the thyroid gland and the fear was that it may have spread. A second  surgery was planned. I remember  calling the Oncosurgeon. I croaked  “Doc, I am ready to go under the knife again. The damn tumor is malignant”. He was a little taken aback. No patient had ever called him this way. His response was “oh! You are brave Vandana“. I managed a weak laugh and told him this is who I am- a fighter to the core (I am a defence officers daughter and married to a defence officer. The likes of us do not give up easily).

WHEN I DIED:

5 days later I underwent a complete thyroidectomy.  Unfortunately during the process of surgery my right parathyroids got accidentally damaged. (During my first surgery, the left parathyroids were  purposefully removed.) Today I live without the parathyroids. There are very few documented cases of  complete parathyroidectomy- as my  Endocrinologist says, only 1% cases like mine are known in the world.

Post the second surgery I was discharged and was told to return after a  month for cancer treatment. So much had happened post the cancer diagnosis and still nothing made sense. I was like a zombie going through so much without any idea of what lay ahead. My voice was hoarse, I couldn’t speak and I had a large stitched up  wound on my neck .  It was 2 days post the surgery,  I was sitting in the washroom when my feet  became numb and I felt strange uncomfortable tingling sensation on my nose ,on my cheeks and on the  lips. When I stood up I felt my legs were made of lead.. My entire body began to stiffen up. We called the surgical oncologist; He sounded concerned  asked us to rush to the hospital. The hospital was nearly 90 minutes away from home. I remember as I got into the car, my mother  handed me a tetra pack of juice, I reached out to  hold it but I couldn’t close my  fingers on it.  As we were  driving  towards the hospital my body felt like a dead log. At that moment I remembered what my father always told me –“recite the Gayatri Mantra. It has immense power.It will always keep you safe”. I started reciting it but my tongue stiffened, my jaw dropped, my mouth remained wide-open I couldn’t close it, I couldn’t blink my eyes..

For a lay  person it is what happens to a human body on death – Rigor Mortis! I was watching myself die. I started slipping into unconsciousness. I don’t remember what happened next, all I remember is telling  my husband that I don’t think I will make it. (all this while  my young daughter was  seeing me  slip towards death. When I think of it now, I choke on my tears. No child should ever have to see what my daughter saw. This is a very painful memory for me) . A quick decision to take me to the nearest hospital was made. We were at  a traffic junction. Had we crossed the traffic junction I would have died as that stretch of road there were no hospitals for miles. I lost consciousness and when opened my eyes I was in the  emergency of a hospital with an  iv line attached to my arm. The doctor on call said had I reached  fraction of a second later, it would have been dead. I had suffered  a cardiac arrest and flat lined. I was lucky to be revived in the nick of time. I wasn’t ready to die. I wasn’t going to let my daughter be without her mother.. no way was I ready to embrace death.

DEALING WITH A LIFE THREATENING RARE CONDITION:

I learnt that my body no  longer produced any calcium by itself. Calcium is the fuel for all muscles and heart is also a muscle. At that moment the immense complexity and the gravity of the situation unfolded. My body was totally dependent on external calcium to stay alive.  After being infused with calcium I  rushed to the hospital where I was operated.

On reaching the hospital. the symptoms reappeared. The tingling was back and the numbness of the muscles started. I was rushed into the ward and  I was put on multiple drips. I was admitted in the hospital for 4 days with round the clock calcium being administered to me through an IV. My hands became sore, the veins of my hands became tender, turned blue and were swollen. Soon locating veins became difficult . But I never complained.

FINDING HUMOR IN A DIFFICULT SITUATION:

When I went in for an endocrinologist consult he said – “did you take pictures of your self when you were dying. What Happened to you is so rare and hardly any documented cases are known. I laughed ‘croakingly’ and said “ no pictures doc, I was busy trying to stay alive”

TO LIVE I Had TO POP IN 18 PILLS A DAY:

I was put on a heavy dose of calcium . The doctors told me if I missed my calcium tablets for more than a day I would die the next day. Hence started another parallel ‘life threatening’ problem along with carcinoma treatment.

CANCER TREATMENT:

The treatment for thyroid carcinoma is called “Radio active iodine ablation’.

Post my surgery the in thyroxine replacement was not  started as I had to undergo I-131 scan. My body was starved of thyroxine. Because of which the  TSH gradually increased( Hypothyroidism). That was not the only struggle. I was also strictly told to stay of white salt as it contains Iodine. A very high TSH and no external iodine in the body was the  only way to get a correct I-131 scan. For the next  30 days, whatever I ate was without salt. I couldn’t eat any outside food,  no packaged food and no food from any restaurant. Home food was made without salt. I was barely coming to terms with what happened to my body, when the rising TSH values made my faculties  very slow. My body became sluggish, mind became dull and I couldn’t even eat half a chappati. I slept all through the day. After a month my TSH levels were at 150. I so vividly remember the doctor muttering to himself “ wow 150, it is so toxic that her heart can stop anytime”

NIGHTMARE:

If what had happened wasn’t horrific what followed was a nightmare!  I had to swallow a capsule, the contents of which were radioactive;  my body became radioactive. This made me  harmful to all living things. I had to stay away from everyone, use a different washroom and even my clothes were washed separately. The  plate and the cutlery used by me could not be washed with other utensils. For two days I stayed in another room at home and on the third day came back to for an I-131 scan.

I was ushered into a room which was freezing. There for the first time I saw an I-131 machine which used to scan patients to  pick up any traces of thyroid cancer. The scan detected some uptake and I was scheduled  to undergo ablation.

WHEN I WAS RADIOACTIVE AND IN ISOLATION:

This treatment is used to ablate (destroy) any thyroid tissue not removed by surgery or to treat some types of thyroid cancer that have spread to lymph nodes and other parts of the body. I went into a room and was told to sit down. Lying in front of me was a glass jar tightly sealed with a small pipe attached to it. There was a doctor standing there. He Asked me to drink that liquid through the pipe. Strict instructions were given to me to not let a single  drop fallout and the pipe should not touch any place but my mouth. I had been informed that I  needed a very strong dose of radioactive iodine. I finished drinking the radioactive iodine and I left the pipe out the stone platform accidentally as I was confused and a scared. The doctor scolded me saying  that I had contaminated the platform by keeping the pipe on it. I was overwhelmed and I was in tears as I was unable to  understand what  was happening to me.

THE WORST PHASE OF TREATMENT:

Next I was admitted  into what was called a makeshift isolation room (R & R did not have an isolation room). It was a store room which has been converted into an isolation room because I had become hazardous – I was like the radioactive leak at the Chernobyl nuclear power plant. My body was so radioactive that I was a danger to anything living. I was told that for the next three days I had to stay in that room and  use the washroom outside. No one  could meet me and I was not allowed to step out of that room. All communications were to be made through a phone which was kept in that room. My meals were left  outside the door, a knock would indicate that the meal has been kept there. No one could share the washroom that I was using.  All my clothes were dumped in a bag not be mixed with any other clothes. They had to be washed separately. For the next three days my husband would come to meet me once in a day and  we would see each other from across the door. I was inside and he would be outside. That was the only human contact I was allowed. My young daughter who had not stayed without me for even a day couldn’t meet me. All this hurt – emotionally and on day third day I broke down. I cried myself to sleep. It was all a nightmare, still so fresh in my mind. On the fourth day the radiation levels were checked using a machine .  I was discharged but with strict instructions that I was to live in a separate room for the next 2-3 days. Follow up with the doctor after 4 days ushered in the reality that now I was a cancer patient. The intent of the treatment was  curative but the reality was that for the rest of my life I would need  follow ups to check for any cancer recurrence.

DIFFICULT DAYS:

It wasn’t the fear of the scan that would bring me down but before each scan the thyroid supplements had to be stopped for a month and for a month body had to be starved of salt (for 5 long years this ritual continued). Two days before every scan I had to eat a radioactive tracer capsule , be isolated for 2/3 days and followed by the I-131 scan. Post the scan my thyroid supplements would restart. It would take me 3 months after every scan to settle down. Two months  of settling and I would be preparing again for the next scan. It was a  torturous process.  I underwent regular follow ups with I-131 scans.

It wasn’t the fear of the scan that would bring me down but before each scan the thyroid supplements had to be stopped for a month and for a month body had to be starved of salt (for 5 long years this ritual continued). Two days before every scan I had to eat a radioactive tracer capsule , be isolated for 2/3 days and followed by the I-131 scan. Post the scan my thyroid supplements would restart. It would take me 3 months after every scan to settle down. Two months  of settling and I would be preparing again for the next scan. It was a  torturous process.  I underwent regular follow ups with I-131 scans.

BEING A CANCER PATIENT:

Today I fall in the category of a low risk cancer patient. No doctor will ever declare me as a cancer- free patient.

THIS IS THE HARSH REALITY OF A CANCER PATIENTS LIFE!

PACKAGE DEAL:

Surgery and treatment resulted in a lot of damage to my body.

  1. Today my body doesn’t produce any calcium . I take 12/14 tablets every day. IF I MISS THE CALCIUM TABLETS FOR A DAY, THE NEXT DAY I WILL  DIE ! I can control my life now  🙂
  2. I have been diagnosed with uncontrolled asthma. It’s a side effect of the treatment.
  3. Bone health is a reason for concern. I have suffered two fractures last 10 years . I have been cautioned not to take a fall.
  4. I have also undergone a complete hysterectomy.
  5. The digestion is managed through  external medication. I can’t afford to have diarrhoea as that causes a sudden drop in calcium and magnesium.
  6. There is residual damage to the vocal cords.
  7. I suffer from debilitating bone pains to relieve the pain I am on a  daily dose of  mild opioids.
  8. My muscles have tingling at will  . Sitting too long, standing too long causes the muscles to go numb. I am forever doing a tap dance. I have given up driving because my legs go numb.
  9. I have undergone countless blood tests, MRI’s, X-rays, CT scans  and also a lumbar puncture. This is a way of life for me. The amazing bit  in all this is that I am still alive!

(Foot note: This is one part of my journey. I have also been involved in a near fatal miscarriage, a horrible car accident and a couple of more such adventures,)

MY BELIEF:

My journey  sums up my belief that we die only once; if today I am not dead,  I am alive. So I live life to the fullest. My message to everyone is – don’t let the fear of death take away the joy of living from you. Life is a blessing, live it well.

PARTING MESSAGE:

“I always get to where I’m going by walking away from where I have been.” Winnie the Pooh.

I don’t live in the past, neither do I fear for the future. I know today is a gift that I have and I live my today well.  I have dedicated my life towards the cause of cancer. I have no bitterness towards cancer, Infact, I am grateful to it for giving me a life purpose, for guiding me towards my calling.

When  the going gets tough… The tough get going

When the going gets rough… The tough get rough….

Author By…
Ms Vandana Mahajan

Vandana Mahajan is a cancer survivor and a cancer coach associated with a Mumbai-based cancer non-governmental organization Copewithcancer – Madat Trust. She is trained in palliative and bereavement counselling with a post graduate diploma in integrative counselling. She is a volunteer counsellor at the Tata Memorial Hospital, Mumbai and also provides non medical cancer counselling to patients and caregivers across India and abroad via online platforms.