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Arun Sharma: Caregiver of an Adenocarcinoma Patient

Adenocarcinoma Diagnosis

Her left eye had started becoming smaller. We thought it would be some minor eye infection and ignored it for a year or so since there was no damage to the vision. But when we consulted a doctor, he suspected it to be Adenocarcinoma, a rare type of cancer. When we heard that it could be cancer, suddenly, the world slipped from beneath our feet.

On 3rd December, we got the Biopsy done, and incidentally, it was our 17th marriage anniversary. Many friends and relatives were calling us to wish us on our anniversary, but we were in such a situation that we couldn't enjoy our day.

After the biopsy, we got another test done, and we got to know that it was Adenocarcinoma and that she was already at stage 4 of the cancer. No one in our family had suffered from cancer, and therefore it came as a huge shock for us.

We follow Buddhist philosophy, and after the diagnosis, we tried to keep our life force at the apex so that even if people come to see us in a crying state, they would go back seeing our positivity. And when we broke the news of the diagnosis to our family members, they were initially very emotional, but actually gained strength from us.

Adenocarcinoma Treatment

Doctors were not very optimistic about the whole thing since it was already stage 4 Adenocarcinoma, and since it was so close to the brain. They explained that Adenocarcinoma was a very rare type of cancer; not even featured in the top 16 cancers in India. The doctors told that the only way was to do Chemotherapy and try to shrink the tumour, and if they succeeded in that, then they could go for Surgery to remove it. Generally, for any cancer connected to the head, the protocol is to do Surgery first, but in her case, the tumour was so close to the eye that if they had done the surgery, she could have lost her eyesight.

After her first Chemotherapy session, her condition deteriorated like anything. She went into a septic shock. She had a multiple organ failure, her kidneys and lungs collapsed, she had a heart attack, she was put on the ventilator, and her heart pumping capacity came down to 15. The doctor told me that there are very few chances of her surviving through it.

The whole thing that happened from the first Chemotherapy to the septic shock was very rapid. We were not prepared for these kinds of things. She was very young, she had a very strong immune system, and before cancer, she had never gone to a hospital for any illness. So the doctors were very confident that she will be able to take the chemotherapy, and thus they never expected her to go into septic shock after the first Chemotherapy.

We found it hard to deal with the obstacles in succession. First it was the rare type of cancer in Adenocarcinoma, and then the septic shock. When the doctor gave me the news that she may not be able to survive, my friend insisted that I get one last look at my wife while she was still alive. But it was tough for me to look at her with all the cannulas, pipes, drips, and her whole face bloated. But somehow, I gathered my courage and stood in front of her. I remembered that she used to chant the 'Nam Myoho Renge Kyo', a chant in Buddhism every day for 8-10 hours before getting admitted. So I did this chant there, but it was tough for me as the words were not coming out of my mouth. At the end of the third chant, suddenly, her hand came out of the thin blanket, and she gave me a thumbs-up. She was unconscious, but this was a miraculous thing that had happened. That small gesture gave us renewed hope. So when we came back home, we chanted throughout the night. My friends and family joined me, and we all kept on chanting for 48 hours at a stretch. On the third day, she showed signs of improvement as her heart pumping capacity went up to 40%. Slowly, her heart, lungs and kidneys revived, and within two weeks, she came out of the hospital. She was very lucky to come out of the septic shock alive, as only 2% of people survive it.

She came home, but it was not the end of our worries, as within three days, she started having unbearable Pain in her hip joints. No amounts of Pain killers were able to reduce her pain, and she was restricted to her bed. We couldn't fathom why the hip joint was paining because the cancer was somewhere in between her eyes. With very great difficulty, we managed to take her to the hospital, and the doctors found out that her left hip joint had got permanently damaged because of the septic shock. The cartilage, which acts as a natural greasing agent between the joints, had disappeared. When cartilage disappears, the two bones start rubbing each other, which causes unbearable Pain. The field of medical science has not developed to the stage where they can inject cartilage into the body, and the only cure was to replace her hip joint. But the operation could not be done until she was completely cured of cancer.

Shock after Shock

It was wave after wave of shocking news that came our way. On one side, she was battling cancer, and on the other, she was going through 24 hours of continuous Pain on her hip. The doctors added to our Pain when they informed that they couldn't do anymore Chemotherapy sessions as her body was not able to stand the first Chemotherapy.

With Chemotherapy also being ruled out as an option, all that was left was to try radiation. But the doctor told us that radiation was not of much use, but it was the only line of treatment remaining that her body could withstand in the present condition. In that period, I realized the limitations of allopathic medicines and started exploring alternative therapies. We went to Dharamshala, and from 16th February onwards, we started Ayurvedic medicines along with the radiation.

My Daily schedule

I had the responsibility of taking care of my wife and my two kids. Almost every morning, I used to go to doctors to get some sort of medications as she used to have multiple problems simultaneously. After this, I went to my office and attended some Buddhist practices after office hours. Then I came back home where I had my wife and my young children who both needed looking after. I used to give massages to her because she was in so much Pain. Then late at night, I would read more about the disease and alternate therapies. This was my schedule of managing everything.

That was a traumatic experience for kids

I had two small kids, and it was an extremely traumatic experience for them to see their mother crying and hovering around with Pain. She had lost all her hair due to the Chemotherapy and her whole face darkened because of the radiation. Seeing their mother like this affected the kids so much that my son refused to go to school, and my daughter was barely passing in her exams. Due to all this, I was forced to take the decision of putting my kids in boarding school as they were going through so much. I knew that it wouldn't be easy for them in any way initially, but I was hoping and praying that they gradually get used to it. I somehow made my wife understand, and in hindsight, it was one of the best decisions that I took during that time.

By this time, she was totally bedridden, losing much of her weight, and becoming bald and frail. She couldn't even look at herself in the mirror. Because of all the radiation, her saliva had become very thick, and she was finding it very hard to swallow her food or to spit out the saliva. Those were some of the toughest days of our lives.

Can't see her in pain, so I had to take the risk

In June, when I showed a 3D scan to the doctors, they found a patch in her lungs and told me that Adenocarcinoma had spread to her lungs. They added that she didn't have more than three months left. I never told this to anyone and kept assuring her that everything would be alright.

When the doctors told me she would not survive beyond three months, I decided that she shouldn't spend all her remaining days in Pain. I had consulted an Orthopedician who told me that getting the hip bone cut will help to relieve her of the Pain as it was due to the rubbing together of the bones. They told me that it would not be an easy Surgery since she was already very weak, but I decided to go through with it anyway and got the Surgery done.

The unbelievable news

By March, her Radiation therapy got over, and the doctors concluded that no more treatment procedures were remaining in allopathic medicine. So only the alternative treatment was going on at that time. On 17th November 2016, we went for a check-up and got her PET scan done. When we showed it to the doctor, he checked all the reports and told us the unbelievable news; the Adenocarcinoma had disappeared. Even the doctors had no idea how it had happened. We came back home jubilant, and even though she was bedridden since the hip joint was not there, she started putting on weight and became visibly better. It was altogether a very joyous time for us.

From 2016 November till 2017, we kept having PET scans on regular intervals, and all the reports were coming clear. There was no cancer. The doctors had told us that if she went one whole year without the cancer relapsing, they could get her hip replacement Surgery done. We were patiently waiting to get the Surgery done and to get her back on her feet.

She always encouraged others

I still remember, in the first few months in 2016, when she was in so much pain, she still used to be so full of life. Our friends and family who used to wonder how to face her or talk to her were surprised after the visit at how inspired and charged up she was. Not once did she complain of the Pain or why she had to go through all this and took everything that came her way in her own stride.

In Buddhism, there is a very important philosophy that we should not only become happy for ourselves but should always help others become happy too. So when she became cancer-free, she started giving back to the society by meeting other cancer patients. Even in the stage when she had her hip bone cut, she would have met at least 25-30 people who were suffering from cancer and gave them the hope and determination to fight the disease.

Cancer Came Back

Everything was going perfectly alright when the results of the PET scan taken in January 2018 came back with bad news. The cancer was back, and within 10-15 days, she started having unbearable Pain in her hip joints and legs. We were taking PET scans at regular intervals of six months as advised by the doctors, but the cancer had already reached her bones by then. All the doctors I consulted gave the same reply that nothing much could be done.

By that time, her Pain started increasing exponentially and spread to different parts of her body. The Pain became continuous, and she needed painkillers 24/7. Even then, sometimes, when the painkillers took 1-2 hours to start working, she used to hover like anything. But even during those days, she always met whoever that came to visit her with a smiling face.

From February 2018, her condition kept on worsening, and the doctors told me that there was nothing more that they could do. I remember in the last week of November 2018, she developed a huge breathing problem. That's when we took her to the hospital, and doctors told us that cancer has spread all over in her body, including the lungs, which was why she had difficulty in breathing.

She started writing a diary in ICU

When she was in the ICU, she started writing a diary through all the Pain. I've never come across any person who has gone through so much and still wrote the things that she did, so courageously. In that, she had written, "So when I go and meet God, can I ask him why you called me so early?

She was very attached to our kids and used to ponder over what would happen to them. So she used to question God and would write the answers from what God has told her. She wanted to encourage the kids and wanted them to look beyond the immediate problems into the vast life and opportunities ahead. She even wrote a beautiful poem for our kids:-

As you fly to soar into the vast blue sky

Do not worry my child just fly

Many a times the weather may be rough,

And you feel carrying on is tough, do take rest for a while,

Do not worry my child just fly

The journey is long, many would join,

Seek God's wisdom to pick good and not bad coin,

Do not worry my child just fly

As you make friends and final happiness anew,

Always remember your roots cause they are the one who nourished you,

Do not worry my child just fly

Ma would cry and Papa would advise,

Just bless them cause they think nothing but the best for you in life,

Do not worry my child just fly

Your wings may be small now and you haven't proved a thing,

Do not be afraid, fly you will cause Ma and Pa are the wind beneath your wings,

Do not worry my child just fly

Stop you will not, never would you give up,

These stormy winds will only become the power to claim your own sun,

Do not worry my child just fly

As you fly to soar into the vast blue sky

Do not worry my child just fly.

She wrote everything in her diary, and I think she saw it coming, and on 11th December 2018, she left for her heavenly abode.

She was a courageous lady

From the 1st December 2015 till 11th December 2018, we endured through some of the worst points of our life. Everyone used to say that only she can bear that Pain since no one could face these things with a smiling face. Even when she was bedridden, she was so fond of getting up, doing work, and giving gifts to people. She used to go above and beyond to help people, despite her hip condition, and whoever she met got inspired by seeing her strength.

Difficulties are bound to happen when you are born as a human being, but how you face them is what defines you as a person. She was a very courageous lady, she could have died during the septic shock, but her strong will extended her life to 2 more years, where she encouraged and inspired a lot more lives. We felt that maybe it was better that she passed on as that brought an end to all her sufferings. The kids also realized this and were able to process her death in a much better way than I imagined.

Kids became responsible

After her death, I noticed that my kids became more responsible with their lives. The entire trauma had brought us very close as a family. When my wife passed away, my daughter was in 10th standard with her boards just two months away. She was an ardent badminton player and had the opportunity to play Nationals. While I was very confused about what to do, my wife desired that she should play in the Nationals, and I decided to let her go. She played the Nationals and came back with just two weeks remaining for the board exams, but studied hard and scored well in the exams. I had taken an extended leave at that time and taught her a subject that was too difficult for her, but she ended up scoring 98 marks in that subject becoming the school topper too. Even in the most traumatic time, she not only played in a National level badminton tournament, but also scored 94% in her 10th board exams.

We believe in eternity

Even though we know that she is not physically with us, she is with us in every thought and memory. We know that she is watching over our every step. My bond with my kids became stronger than ever, and now I'm both a mother and father to them. I know they will find their destiny, and that the Pain my wife suffered will not go in vain.

Parting Message

Our life is not in our hands. You are not born by choice, and neither do you die by choice. It's useless to think about the past just as it is useless to worry about the future. The only thing that is in our hands is today, and so we should try to make the best of it. Have faith in God, and everything will be alright in the end.