A father’s Final Fight With Stage IV Duodenal Adenocarcinoma from a daughter’s Eyes.
“One month… May be less. Hmm…. Less than a month. I think you should take him home. Let him be amongst his familiar surroundings and people he loves. That’s the best you can do for him now… Really… We are sorry, it’s too late.” Duodenal Adenocarcinoma…Stage IV.
The death clock had begun to tick to the sound of beeping monitors… We took the elevator, the journey to the 3rd floor seemed never ending… shaky steps took us to the Men’s AC Ward… Bed No 448 was staring at us. We had decided… the truth will be hidden… The truth will not set him free.
It all begun in the Autumn of 2015. The much awaited family get-together of my Delhiite cousin tying the knot with her childhood buddy. After a tug of war between choosing the flight or the train, we opted for the latter, as he was complaining about the back aches, now he could lie comfortably through the entire journey…from Kolkata to Delhi. We boarded coach A1 on 7th August, the signal was green… we were moving…
But… We missed the red signal
Of late he had been aloof… Aloof from all that he loved to do best – the daily bazaar (visit to the marketplace), reading the daily newspaper, novels, watching his favorite news channel.
Worldly affairs did not mean much to him, neither did family affairs. At gatherings he was there… yet not there.
He was unwilling to call up friends and relatives for a chat.
He had been writing… Writing names even at the middle of the night- Signs similar to Dementia associated with age.
A back pain had been a bother for some time now… A slow lingering back pain, which could be overlooked for ailments associated with old age.
A constant feeling of constipation haunted him on most days- The family physician had advised a tonic to reduce that.
Irregular and at times uncontrolled bowel movements – similar to indigestion, especially after a heavy- rich meal.
Loss of appetite… A rush to complete meals… Treating them like a task that needs to be accomplished fast. Throwing up after most meals.
The bloated stomach – Mistaken for fat accumulation due to a sedentary lifestyle.
Laziness, unwillingness to walk even a km.
A constant urge to lie down and stare into the oblivion.
Could it be Duodenal Adenocarcinoma*?
Signs and Symptoms
- Uncontrolled bowel movements
- Acidity and indigestion
- Loss of appetite
- Back pain
- Unnatural bloating of the stomach
- Nausea and vomiting
*In most cases note- duodenal cancer does not show any symptoms till the last stage when the tumors or ulcers become large enough to block the entry of food into the intestine.
The Last Journey
I had read this somewhere – “Life is too short, time is fast, no replay, rewind so enjoy every moment as it comes.”
Glad we made that last trip- It was a family wedding. For the man who loved his family, especially his brothers and sisters, it was a treat. The family flew in from all around the world. Happy were we… Unknowing that these moments would convert ti cherished memories soon. The wedding went off well. Typical Delhi style- with a lot of Indian Punjabi dancing, DJ and drinks! He was there through it all. Awake and enjoying the merriment till the wee hours.
Soon it was time to go home… Time to set foot on the last journey.
The journey back was not as smooth- He was restless now- restless to be back home – Within a span of a week he was unable to eat any solid food. The degeneration was rapid. For someone who loved food – this was sure a big setback. Frustrating. Determined now, that once we reach, a check-up with the doctor would top the to-do list.
On Board the Sinking Titanic
An appointment with the general physician was fixed – In the midst of it all, apart from the inability to eat, he was quite hail and hearty. He had begun to live on curd rice, soups and coconut water. Something was wrong.
“Next Please!” He walked into the doctor’s chamber. “Hello! Kemon achen?”(How are you ?) In Bengal (India) – that’s the first thing you say when you meet someone! Bhalo achi! Thank You. (I am well, Thank You) Said he. Lie! Lie! Lie! Strong minded people never admit that they are sick even when they are.
The of late symptoms were explained to him. “Hmmmm… shuye porun please!” (Lie down please)- After examining his stomach which had bloated up since the last few months, followed a never ending silence. Then he said… “The stomach is bothering me – this bloating – not good!” Bloating!??!! And we were thinking he was putting on weight just lying around and doing nothing!! “Yes … there is water accumulation!” What the *****! Hmmmm… More silence… Get him admitted – we need to do some tests!
Suddenly I felt we were on the Titanic that had just crashed into the big Iceberg.
He was soon admitted – a series of tests followed. He hated the hospital – Always did. Forget the hospital, he even hated normal check-ups. – We all prayed.
3 Endoscopies, Colonoscopy, Blood Tests, the list was endless – The tests were painful. The endoscope passes through the mouth and oesophagus into the stomach. The camera gives us pictures of any irregularities within.
The results were not good- the endoscopy had detected some kind of growth. Are you his daughter? Sign the consent form. “We want to do a CT Scan and a Biopsy!” Said the medical assistant.
We were sinking… Neck deep now!
Test that may help detect Duodenal Adenocarcinoma
- CT scan with contrast dye to help identify affected areas
- Complete blood count (CBC)
Autumn… The Hush Before Winter
“O Autumn, laden with fruit, and stain’d
With the blood of the grape, pass not, but sit…”
To Autumn, William Blake
The Autumn breeze was blowing strong… It was that time of the year when you would be shopping for the much awaited Durga Puja (A festival that celebrates the homecoming of goddess Durga). It would soon be winter. Moreover we were eagerly expecting the new addition to the family next month.
It was the 1st of September, I had lost my ailing father-in-law 2 days back- another story altogether. He was still at the hospital. The doctor had asked us to meet at 11 am. I hate meetings.
Come in please. Never had my legs shaked so much! We walked in.
Sigh! More sighs! Silence! “I’m really sorry! It’s too late.” Crash! It seemed that the world had crashed at my feet. The last nail had been hammered. It was all over.
“Cancer in the stomach… Stage IV… We can’t do much.”
What!! No!! This was not happening to us. I was 8 months pregnant. The baby would be due soon. How much time do we have? Thoughts were crossing my mind like a thousand lightening crossing the skies before they thunder.
”It’s not over, I thought. I can take him to the US or the best Cancer Hospitals in the country.”
He went on. One month… (Long pause) May be less. Hmmm…. Less than a month … maybe a week! Can’t say… I think you should take him home. Let him be amongst his familiar surroundings and people he loves. That’s the best you can do for him at his age now… Really… We are sorry, it’s too late.”
“There has to be a way… Come on Doctor. You can help us. We can do anything. A surgery too, whatever it costs.” I repeated. Monitory troubles never come into your mind when it’s about saving your loved one.
“Let me explain” He said… “I can understand what’s going on your mind…. Your father is in the advanced stages of the rarest or rare cancers- It’s Duodenal Adenocarcinoma.” It took us some time to comprehend.
He went on… “Multiple ulcers have turned cancerous as the biopsy says. These ulcers have grown all around the stomach, not leaving the small intestine, large intestine, liver, pancreas and ofcourse the duodenum. The tumour at the mouth of the duodenum was growing – the growth was now an obstruction to all food going down the food pipe.” That explains why he threw up every time he ate lately. No food can enter his stomach. It will be only liquid diet now. Drips and Drops.
What is Duodenal Adenocarcinoma?
In Duodenal Adenocarcinoma tumours form in the duodenum – This part of the stomach aids in digestion combining bile and enzymes. The cancer leads to complete malfunction of the duodenum leading to food obstruction, throwing up bile and indigestion. The tumours obstruct the gastrointestinal tract.
Beware! This is one of the rarest of stomach cancers. Rare enough to confuse doctors on the right mode of treatment to increase longevity.
Stage I: The cancer may be present only in parts of the duodenum
Stage II: The cancer spreads to nearby tissues and lymph nodes
Stage III: The cancerous tumors have grown into organs in the digestive tract, including the stomach, ileum, jejunum and colon.
Stage IV: The cancer is now also present in abdominal cavity and in organs outside the digestive tract. Complete blockage of the duodenum may result.
So…. How long has this been growing? I asked, there were no symptoms. …He was quiet…”Since the last 3 months. This cancer flies! It flies like a thousand bees storming around the bee hive. The stomach was the bee hive. The cancer was feeding on it. It has spread like wild fire.
*”In most cases note- duodenal cancer does not show any symptoms till the last stage when the tumours or ulcers become large enough to block the entry of food into the intestine.”
Was your father a smoker? Yes! But he quit smoking years back.
Did he suffer from tuberculosis? Yes! But he was cured completely more than 40 years back! And Oh yes he had piles – haemorrhoids once due to his rich protein diet comprising of meat.
Does your family have a history of cancers? Yes! My grandmother, uncle, aunt…
Hmmm… Could be genetics.
Are You At Risk?
Some of the probable causes:
- A history of Tuberculosis
- Crohn’s disease
- Fat rich diet
- Inadequate intake of nutrients
Doctors across the world are still researching on this form of rare cancer. The results are yet to come. The disease is undetectable in most cases till Stage III or IV.
So what are the options?
He repeated – Take him home – no cure – Let him live his last days happily. He is 85 respect his age. Don’t make him suffer more. The treatment will be painful.
No! We were not giving in. We insisted… “Please give him a chance.”
Alright he said – “The options are 2:
“Surgery – We will remove the effected parts of the stomach. He will be on artificial feed all life. A feed tube will be attached to his mouth so that he gets the feeling that he is eating. The bile will collect in a bag attached to his body. The tubes will add nutrients (feeding tubes) and remove excess processed food that cannot pass through the blockage into the stomach.
However given his age… 85 years…lets rule out surgery.”
Dangers post surgery
It may so happen that we cut him open and find that we can’t do much. The spread may multiply in this case and chances of survival post-surgery minimum.
Stenting is the best option- We will insert a stent to carry food into the stomach bypassing the tumours.
“The choice is yours… but I suggest…”
“It’s ok Doctor”… I said. “We will get back to you.”
It was all over. The Titanic was going to sink. The Captain had given up steering the course.
Duodenal Adenocarcinoma Treatment
Surgery – Removal of affected organs, tumours etc. followed by Chemotherapy and Radiation Treatment. A ‘Whipple’ procedure may be used in surgery.
Stenting – A stent – tiny tube would be passed into the stomach enabling entry of food.
The Light At The End Of The Tunnel
The next few days were spent in utilizing contacts we had across the best Cancer Hospitals in town. We froze on the best. We decided to shift him the very next day.
He was happy…excited … He thought he was going home.
The most difficult part of cancer is letting the patient know about the disease. At stage IV we felt its best to keep it hidden. The truth would kill him. We felt, he should be happy for as long as he lives. The most difficult part had been breaking the news to my mother.
We explained that further tests were required and we were taking him to a better hospital. All arrangements were made. The admission process was smooth. Hope was flickering like light at the end of a tunnel.
The Last Battle
He was at the best Cancer Hospital in the country.
More tests followed. By now he was guessing that something was horribly wrong. Relatives from across the country dropped in. He was suddenly enjoying all the attention.
The doctors had decided… They would attempt the stenting
It took an hour. The stenting was done. 24 hours would decide if the stenting worked.
A day passed. We had failed. The stent had failed to settle. The ulcers had grown to the length of preventing even a tiny stenting tube to pass through.
The light at the end of the tunnel was no longer visible. The Last Journey to darkness had begun.
Those Final Days…
When Doctors at the country’s top most Cancer Hospital tells you “Take the patient home. The case is closed. There are possible survivors waiting for a bed. You are wasting your time here…”
Then… there is not much you can do.
The sound of the sirens on the ambulance was never more painful. My head was throbbing and so was the heart. The journey home was the longest ever.
We organized for Home Care. The AC was set up in his room. Of late he was feeling hot. Liked it when we compressed his stomach with an ice bag or wiped his face with a wet tissue.
Home care involved 24 hour nurses, a drip stand, wheelchair, bed support – All these would be his companion till the end.
He was happy! Sometimes I thought the doctors were right. He would be happy at home.
The last 10 days
The drips went on. The channels on his hand were changed occasionally, when he scratched them in frustration. Soups and water was the only home cooked food. I could see him getting frail. Rashes had developed around the mouth.
19th September 2015
I dropped in to see him before I left for work. He had covered himself. “Baba (Dad) take the bed sheet off your head please!” I switched off the AC, guessing he was feeling cold. Bye! See you soon! He waved a goodbye with a smile.
It was Saturday, I was home early. After a long week I wanted to spend the next few days with him, planning further treatment options, and taking steps to increase his longevity.
It was 6 pm. He was shaking and shivering. It was a fit! We were caught unaware. A hot oil massage followed to lower the shivering on his foot and hands. He was restless. He wasn’t listening. He wasn’t responding. We called in the family doctor… No pulse! No pulse! Admit him!
The sound of sirens filled the air again!
This was not happening! This was just a bad nightmare! Well no! It was a living nightmare! Things were moving at break neck speed. They put him in the ICU. The pulse was back but he was sinking. They put him on the ventilator. Septicaemia had set in. He was on ventilation all night. No response. He looked like he was in coma. He suffered a multiple organ failure from Septicaemia caused by Stage IV Duodenal Adenocarcinoma.
“Please let him rest…”Said the doctor on night duty. He looked at complete peace with a faint smile on his face.
We went back home. ICU does not allow outsiders for more than 5 mins. There are rules.
20th September 2015
The sound of chirping birds had filled the fresh morning air with vibrancy. Grey clouds had gathered in the horizon. The sun had just woken up from its slumber, gearing up for a long day ahead…The phone rang.
The sleepless night had come to an end… I could hear my sister whispering in my ear… “Get ready… He left us. The car is here. We need to go to the hospital.”
(This is the story of the last days of my father’s life who died of Cancer at the age of 85. He was diagnosed with Stage IV Duodenal Adenocarcinoma- a rare form of stomach cancer. He lived for exactly a month post diagnosis and treatment. The story will help understand symptoms associated with this rare cancer and how early diagnosis and alertness towards symptoms may prevent the disease from spreading. The kind of treatment available, the tests involved and the temporary solutions that can bring relief to the ailing body.)