Updated: Oct 13, 2020
Jean* died twice. The first time, it was dramatic and loud. A nurse had walked into her room and found her unresponsive. She announced a code blue and the emergency team was by her side in seconds. They pricked and prodded her. An IV here, an NG tube there and then clear — the defibrillator pads were placed on her chest shocking her back to life. The team was in a tug of war with death and on that day — they won. The second time, it was less dramatic. She was still in a hospital bed but this time she was but a shell of who she had been. There were tubes running to and from machines into and out of her body. Her breathing was laboured despite the oxygen mask that covered her face. She lay there propped up in bed; her will eroded by this disease. This time there was no tug of war. When the grim reaper came, she didn’t fight. No one did. There was no drama. Only silence. The second time — they lost.
There really isn’t a way to explain how a person you have seen everyday of your life just isn’t there anymore. It’s as if someone just hit delete and they are gone! I don’t know what was more painful. Losing my wife or losing the mother to my two children. I still remember the day I met her. I was new at the office where she worked and we became instant friends. I soon discovered she was everyone’s favourite person. She was very intelligent and organised at her work. Jean was easy to love, a go — getter and fighter who had a heart for people. Few things in life moved her.
So when she was diagnosed with Non — Hodgkins Lymphoma a second time, she put on her full armour and got ready for war. The first time she was diagnosed was a few years before we met. It presented as relentless abdominal pain that was continuously mistaken for stomach ulcers. She was constantly in the ER on treatment for ‘ulcers’ until one day when she became severely ill at the office and was rushed to the hospital. A scan done then showed she had an abdominal mass. She underwent surgical excision of the mass and histology later revealed it was Non — Hodgkins Lymphoma. Chemotherapy followed and after completion she went into remission. Then we met.
It was a whirlwind romance and we were in the eye of it. Two years later, our son was born; the first having been conceived from a previous relationship she had. I loved them both; as much as I loved her. Only good things could come from such a wonderful soul. So there we were. A contented family of four. Until the grip of death came by and changed our even number to an odd one.
It started with abdominal pain. The recurrence. And it’s as if she had forgotten about her previous experience because she was told it was stomach ulcers — again. She visited several clinicians with little change until she took matters in her own hands and had a CT scan done. And there it was. Like it had never left her body. A monstrous abdominal tumour. Taunting. Daring.
It was the aggressive kind. This tumour. So we were advised to go to India for a Bone marrow transplant. India was a whole new ballgame. They had tests for everything. I had never met such a coordinated team of professionals. They would leave no stone unturned and not only focused on her illness but her general well being as well. They would come into our room and explain everything they were doing with such clarity and simplicity. They would patiently answer our questions instilling alot of confidence in us. The plan while there, was for her to start chemotherapy as they prepared her for the transplant.
Everything was going well until a few mornings later when she woke up in great spirits and asked for her I— pad to update her social media accounts. We had our usual banter then I left her briefly to go into town to withdraw some money for the hospital bill. It was while I was away that she had a cardiac arrest and died the first time. It was like she was taking us through a drill. A scenario that no one saw coming. On my way back, the cab driver broke every imaginable traffic rule to get me back to the hospital. Apparently one of the doctors at the hospital had called him and told him Jean was not ok. He didn’t tell me, he just drove. Rather he flew.
I got there when the remnants of activity were subsiding. All I could see were the crumbs of resuscitation as one of the doctors led me to the ICU while explaining what had happened. “Her heart just stopped. We are not sure why but we managed to get her back.” He said. “But she was so stable when I left. How did she just change condition?” “We don’t know. Let’s hope she picks up.”
And she did. Jean1 — Death 0.
In one and a half weeks, her eyes were open and she was stable enough to be transferred back to the ward. But the doctor felt she was too weak to continue with chemo let alone surgery. They called me aside and asked me to take her back home. “We would rather she goes back home in this state rather than in a casket. She can’t withstand any form of treatment right now. If she gets better or stronger, you can come back.” I hung my head in disappointment. What was I going to tell her?
“Are they also giving up on me too?” She asked after I explained the situation — minus a few details. I left out the part where they insinuated that the thread of her life would soon be cut. She asked me so many questions which I skirted around like you would badly arranged furniture in a room. But she trusted me and agreed to come back home. I remember at the airport she looked so frail. A light wind would have blown her to oblivion. They had discharged us with a bag full of drugs. She seemed to have more chemicals in her body than her actual body.
When we got home, Jean insisted on climbing up the four flights of stairs to our apartment. ‘That didn’t take long,’ I thought. She was back to her dogged self. Refusing to be an invalid too long. And that is what she did. She would get up by sheer determination and would talk down to her cancer like a disobedient dog. If it was possible to shake off disease by one’s will power then Jean would have done it. She got up, she walked, she paced about even when it looked like her legs had had it and in a month she was back to work.
Seeing her back at work, startled everyone. If Jean could do it with the devil on her back, who were you? So she would work and carried on with her appointments and chemo cycles like a boss. She would embrace pain and burn it as fuel to keep her going. She did so well until her oncologist recommended a return trip to India. The doctors there were aghast! None of them thought she would make it that far.
Jean went back to India and had the bone marrow transplant. She came back to continue her chemo locally but serial scans showed that the mass was still there. Still, she refused to lose. She carried on with her hospital visits even when it was clear the disease was leeching on her. When she became too weak, her doctor recommended admission which she declined at first — saying she felt better; stronger when at home with her family but she was too weak. So she got admitted.
It was during this admission that the cancer — after eating up her flesh began to ravage her spirit. I could now see, we were beginning to lose her. She looked like she was throwing punches in the air because her opponent had multiplied and was — everywhere. She was in perpetual pain and the light in her eyes began to dim. It was the beginning of the end. On that day even when her friends visited her, I could sense she was struggling. She looked like she wanted to crawl out of her body. “She needs to rest,” I kept telling the visitors. “She looks tired. She needs to relax.” I said this in a loop. In my mind I was asking people to leave so she could sleep but in my subconscious I was telling her it was ok. To get out of the ring.
On a calm January morning as I prepared our younger son for the day, I got a call from her aunt. “Where are you?” “I am preparing the baby then I come over.” “Hurry.” And she hung up. While on the way I got a call from a different person — her friend. “Where have you reached?” “I am almost there.” I knew something was wrong.
When I got to the hospital, I could find neither her aunt nor the friend so I marched straight to her room. When I passed the nursing station, they looked at me and I looked back but no one said anything; so I marched on oblivious that I was being followed.
I walked into her room and there she was. Lying flat on her bed for the first time in a long time. The hissing sound of oxygen I had gotten used to was gone. I glanced at the wall to look for the cylinder that used to bubble with gas and it was off. I saw the machines that were usually connected to her by a maze of wires; they were off. I looked at the curtains, the windows, the ceiling — anywhere else but at the body that lay covered by a white sheet on that bed.
When my eyes couldn’t rotate any longer, they rested on her body. I walked towards her and with trembling hands pulled back the sheet. Her pink skin had already started to look pale. I wanted to talk to her before all her colour was gone. I wanted to tell her hurriedly, desperately that it was ok. Instead I said a prayer and covered her. My heart did not break into a million pieces. It did not shatter. I did not cry. At least not at that point.
There is no written set of rules for grieving. But there might as well be because everyone seems to expect you to grieve a certain way. Some people felt I was too calm. Others thought I was in shock. Everyone who came kept waiting for me to crumble. To crash. They didn’t know that when their journey of grief was beginning, mine may have well been ending. I had grieved this loss for so long. When this disease had started to erode her spirit, I grieved. I grieved when our little boy would ask for his mother and I didn’t know what to say. In my grief and uncertainty I would ink my pain on paper and it gave me peace. I had come to accept that you can’t unring a bell.
The days have since stopped rolling into each other. Now I can tell the morning from the night. The bad days were outweighed by the good but the tide has turned. There are days I laugh and I am astonished my face can still make those shapes. I am glad I met Jean and for the time she was in my life I was happy. When she was in the ring, she fought with all she had. Now she is at rest.
Scars are tattoos with better stories.
As Narrated to me by *Jean’s husband
Lymphoma is a cancer of the lymphatic system.
When people have lymphoma, their white blood cells become abnormal and grow out of control.
Often, the abnormal cells collect in small, bean-shaped organs called lymph nodes causing them to swell.
There are different types of lymphoma. Some types grow very slowly. Other types grow much faster. Sometimes, people start out with a slow-growing type of lymphoma that later becomes fast-growing.
Symptoms: The first sign of lymphoma is usually one or more large, swollen lymph nodes. These swollen lymph nodes can be felt under the skin, and are usually not painful. They are often in the neck, groin, armpit, or stomach. Lymph nodes deeper in the body can also become swollen and cause symptoms. For example, swollen lymph nodes around the lungs can cause a cough or trouble breathing.
Other symptoms of lymphoma include: ●Fever ●Weight loss ●Night sweats that soak your clothes All of these symptoms can also be caused by conditions that are not lymphoma. ( So don’t go to the hospital with a fever and say, “I think I have lymphoma.”
Tests include: ●Lymph node biopsy — A doctor will remove all or part of the swollen lymph node and look at cells from the lymph node under a microscope to see if cancer is present. ●Bone marrow biopsy — A doctor will take a small sample of bone marrow and look at the sample under a microscope to see if it has cancer. ●Other biopsy — A doctor might remove a small sample of other abnormal tissues in the body. These samples are also checked under a microscope for cancer. ●CT scan, PET scan, or other imaging tests — These tests create pictures of the inside of your body and can show abnormal growths.
Treatment: ●Chemotherapy — These are medicines that kill cancer cells or stop them from growing. ●Immunotherapy — These are medicines that kill cancer cells by recognizing the cancer cells. ●Radiation therapy — Radiation kills cancer cells. ●Bone marrow transplant (also called “stem cell transplant”) — This treatment replaces cells in the bone marrow that are killed by chemotherapy or radiation.
After treatment — you will be checked every so often to see if the lymphoma comes back. Regular follow up will include talking with your doctor and having exams. Sometimes, your doctor will also do blood tests and imaging tests. Plus, you should watch for the symptoms listed above, because having those symptoms could mean the cancer has come back.
If the lymphoma comes back, you might have more chemotherapy, immunotherapy, radiation, or a bone marrow transplant.