Miss you… dearly!

“Did you miss me?” my friend would ask as we meet in college after summer holidays. “Oh yes! None to eat my head. Did you?” I would reply. “Well, I already asked that question,” she’d say and walk away leaving me feeling stupid each time.

Would she ever miss me dearly? 

The answer came much later.

Her third chemo session was done. We were given to understand that with every session, one gets better at handling them. What we didn’t expect were new hurdles to encounter with each session. 

She is generally fine on day 2 just after the chemo. I was just lazing through the morning of October 29, 2021, when I saw the message that Kannada actor Puneet Rajkumar was at Vikram Hospital. After working full time in mainstream media, I had just completed a year in independent journalism. I did turn down a full-time offer keeping in mind my friend’s health, and was happy dabbling with freelance assignments as and when. 

“Can you step in to cover Puneet Rajkumar’s health crisis for India Today?” the assignment head of the channel asked me. The story is breaking and I must admit I was carried away. 

“It’s your work. I know you love this. Go ahead, but be safe. I will be okay,” my friend said. I quickly got ready. I was swamped with phone lives. The Quint wanted me to pitch in for the website too. “Don’t forget the rain jacket. Also the water bottle. Why don’t you carry some protein bars?” she was reeling out instructions aplenty. “Will you rest? I will handle it,” I said, quite irritated. “Oh! Don’t forget the laptop,” she continued. Well, she wouldn’t stop. And I must say I had almost forgotten the laptop. What would I do without her?

I planted a safety kiss on her forehead and scooted straight to the actor’s residence. By then, dear Puneeth Rajkumar had breathed his last. 

I was reporting on ground. Fans were thronging the streets. It was raining and my phone’s battery was dying. I was mindful of my mask and sanitiser. My mind was wary of my friend’s condition. I took the help of the security personnel’s outpost at one of the minister’s residences where I was charging my phone desperately trying to keep a tab on her health while I was busy with lives. 

Yes, I was present at the stadium where the late actor’s mortal remains were placed for public viewing. I was also present at the funeral site. I hadn’t slept through two full days. I had scripted a mood piece for The Quint, which was much appreciated. I had done a few lives in Hindi too for Aaj Tak. I was asked to speak to fans, who were also singing songs from Puneeth Rajkumar movies. I had climbed the compound of a minister’s house to capture visuals. There were so many priceless moments that I would have constantly messaged and shared with my friend. This time, I missed that. I kept typing out messages and deleting them knowing my friend was far too unwell to even pick up the phone and read my message. I missed her through every minute of my reportage. 

On the day when the actor was laid to rest and I was heading back home to finally catch up with some sleep, she called me. “I watched your live. It was exciting to watch you on TV after a long time,” she said. I was overwhelmed. She immediately added, “What a crowd! I hope you were safe.” That’s so typical of her. She is always paranoid about my safety. And she fails to realise that I am extra vigilant knowing that I am her carer. That annoys me. 

I stayed home that entire week, tested myself for COVID, before heading to her place for her next chemo. The long gap was hard for she was in pain every day. And I was helpless. Did I make a mistake taking up this assignment? She video called me during that week and said, “Don’t be away for so long. I miss you. Don’t take up such assignments if it requires you to be away for this long. I need you here.” 

I promised her that I wouldn’t. A sharp pang of regret swept through me. I was back with her holding her hand. As she saw me, I noticed that laden tear drop through the side of her cheeks. I cried along with her till she asked me, “So, what’s the inside story? The actor died due to heavy workout? That’s what my gym friends were discussing in the group.”

Countdown to pain

“What is bothering you? I won’t know unless you tell me,” my friend probed, her face reflecting both anger and concern. “Nothing at all. Let’s hurry,” I said with an air of dismissal. We had a lot of things to get done as I had only one weekend to help her out in Singapore. She was getting set to begin a new chapter of her life there. “I know what it is,” she said, almost immediately realising I was battling severe stomach cramps. She gave me a painkiller and said, “I’m so sorry about the timing. I hate to see you in pain.” She paid through her nose to ensure we travelled by cab everywhere so I remain in comfort. 

I never had the faintest idea that I’d be on this side of the fence almost half a decade later, telling her, “I’m leaving immediately. I’ll be there. I can’t see you in pain.”

She was groaning in pain. “I don’t know how to explain it. It’s like severe spasms that come in intervals and last for at least 30 minutes,” she said, moaning again. Did you know that moaning, groaning and sighing in pain helps one psychologically in dealing with agony? You end up Googling everything when there are characters like Tilotama dominating the house. 

I suggested she use a heating pad. That has helped me with stomach cramps every month. The warmth can help ease the suffering temporarily. While I helped monitor the temperature, her parents were pressing her hands and legs. How do you divert her attention from the pain? I began by telling her stories. 

As her sister went back to the US, I shuttled between my home and hers, more hers than mine. I always hated saying bye to my friend. Her eyes would well up as I get into the cab. Every cab driver would drive me home frustrated by the fact that I’m letting my tears literally sink the backseat of the car. And when I leave my home the following week, my dad’s tearful bye would haunt me for the rest of the journey. I was always torn between emotions.

Now, focus: her stomach pain. The doctor suggested a blood test the very next day. Her count had dropped. Chemotherapy can lead to lowering of blood count. When the WBC count crashes, every infection in the body escalates. “It’s important to keep her infections in check, starting with her Fistula,” said the doctor.

She had a separate room, bathroom, cup, plate, water bottle, etc. We were paranoid. We said no to visitors even at the risk of letting well-wishers think that we were brushing aside their good wishes. We dunked ourselves in sanitizers every now and then. The stomach pain was managed with the tablet Buscogast, three times a day for three days.

Never underestimate the power of Tilotama!

The next chemo cycle went by with her stomach pain refusing to bow down to Buscogast. Just when I was back home getting ready to attend a small family function, I received that distress call. “Baby I called the doctor. This pain is excruciating. Ultracet and Buscogast are useless when it comes to these spasms. He has asked me to take an injection to bump up my blood count. It’s called Filgrastim - GCSF. Can you help arrange this?” she asked, whimpering in pain. Needless to say what my answer was.

I’m so glad I’m a journalist. Sourcing contacts - one of the main JDs of a journo - came in handy. I called the PR of a reputed hospital and asked her to arrange this injection. I also asked her to help me out with a nurse, who could come home to administer the injection. She put me on to a person, who runs a healthcare facility near my friend’s home. He was a man of few words. I requested him to send someone to the hospital, collect the GCSF and rush to my friend’s home. All this while I was getting into the car to head to the venue. When you love your family, you end up pleasing all the members, irrespective of your plight.

I was on repeat mode. Call the man from the healthcare facility - call the hospital - call my friend - repeat. One thing I was always good at was coordination… until that day.  The universe was conspiring against me. The man at the healthcare facility claimed the hospital wouldn’t provide the injection without a prescription. I had to request my friend, who was writhing in pain, to check with the doctor for a prescription. I sent it to the PR, and requested the man at the healthcare facility to send his representative again to the hospital. It took me six whole hours by the time the man at the healthcare facility called and said, “I can arrange the GCSF injection through a known source. I can procure it in 10 minutes. It will save you all this trouble with respect to procuring the prescription and coordinating.” I heaved a big sigh of relief. “Anything for that injection please,” I almost cried.

He is such a blessing. He arranged the injection, and sent a wonderful nurse home, who was gentle with my friend. I didn’t know whether to remain angry with God for giving my friend so much pain or thank him for helping me procure that injection despite all those Herculean challenges. I realised I was at the function. I got up and danced. Danced away my sorrow and secretly thanked God.

Reel thriller to real horror

“Tell me when this scene is over, okay!” my friend would whisper while watching thrillers like Anaconda or horror flicks like Anabelle. I’d urge her not to close her eyes and impatiently say, “It’s just a movie for God’s sake!” Her ego wouldn’t let her admit that this intimidating figure is actually frightened of ghosts and ghostly creatures. “Why can’t we just watch ‘feel good’ movies?” she’d say, rolling her eyes. And I’d conveniently ignore her.

Cut to present.

I’d read that side effects of chemotherapy could result in diarrhea or constipation. In my friend’s case, it was the latter. She was generally prone to suffering from difficult bowel movement. Tilotama was adept at spotting one’s weakness and exploiting the opportunity.

“It’s painful and it’s irritating,” my friend said; her frown exaggerating the frustration. Swollen lumps in her rectum made it difficult for her to sit or walk. Could it be hemorrhoids? Her sister ordered tissues from the US, made specifically to tackle hemorrhoids. Her eyes welled up as she swallowed the pain while getting up from the chair after lunch. My mind raced helter skelter to figure out a way to ease this suffering.

Another round of MRI was imminent. “How long will I have to lie down? Tilotama wouldn’t let my sacrum remain in peace baby,” my friend expressed her worry. From pillows to painkillers - how much can we plan, when Tilotama was ten times smarter than JK Rowling’s Voldemort? It wasn’t just hemorrhoids. My friend was literally biting back the angry comments of Tilotama’s friend - Fistula.

“She has developed this infection - Fistula. We should be careful to keep that in control. I do not want to pause her chemo to accommodate a surgery for the Fistula,” the doctor said. The only way to tame this infection is Sitz Bath. And if that doesn’t suffice, just pop a strong  painkiller. For the uninitiated, sitz bath refers to soaking the affected area in a tub full of warm water.

“See baby, I’m almost doing a full squat,” she’d say. A rare quality about her is that she finds cheer even in chagrin. I feigned a Jim Carrey laugh, while I felt a knife carving out my insides. 

One whole week of full squats before we realized online stores have a host of products to make our lives easy. Sitz bath tubs in several colours and sizes to suit your lavatory and it’s like you are sitting on a chair. The region that is exposed to the warm water in the sitz tub could turn sore. And it did.

“How many times did I do my sitz bath? 4 or 5?” my friend wondered, while writing it down in her diary. Her target was 5 every day. The one who handled numbers while designing presentations for Apple and Google, was here thinking numbers to keep her Fistula pain at bay.

My friend and I had a name for Tilotama’s partner too. “Despite this sitz bath, Godzilla is very angry today,” she’d say. And when I spotted her awake in the middle of the night, “Shhhhh! Godzilla is fast asleep,” she’d say, wondering whether to turn to the side or not. 

I usually would sleep on my stomach with one leg stretched and the other propped up like I’m ready to do a ‘Kung Fu’. I started feeling guilty because I’d see her sleeping straight with her legs folded like a frog and her midriff lifted gently with a pillow so that Godzilla remained undisturbed.

Tilotama and Godzilla joined hands to make her life a real horror.

Knocked out cold

“You better wear my jacket. I won’t let you go home without it. It’s cold!” my friend chided as I propped myself up gingerly over my Scooty. I was all set to go home after the dance programme and I refused to wear her brand new jacket for I knew how much she loved it. Well, she had her way and I rode along looking awkward wearing that denim jacket over my Mangalgiri sari with bright gold ‘zari’. But, she was right. I was cold, thank God for the jacket. 

I remembered this incident while reading a book on chemotherapy, which brought my attention to cooling caps. The docs had mentioned that the medicines would be strong enough to destroy not just the rapidly growing cancer cells, but even the cells of hair follicles and nail cuticles.

These are more like helmets that are placed in freezing temperatures for a while and then wrapped around the patient’s head, while the chemo meds are on. The blood carrying the meds may not reach certain parts of the body that are frozen. This is the theory behind protecting chemo patients from losing hair. Similarly, having ice chips inside one’s mouth can prevent a chemo patient from having mouth ulcers, which is one of the key side effects.

You can’t miss her in a crowd; her ‘messy’ hair stood up while she stood out. Some in her office even called her as the one with the lion’s mane. “I have always been proud of my hair, my asset! Will I lose my eyebrows too?” my friend asked. 

Her sister and I researched for two days and we laid our hands on those cooling caps, each costing over Rs 30,000 through Hairline - hair and skin clinic in Bengaluru. Despite knowing that it has a 50% chance of being useless, we wanted to pin our hopes on the other 50%.

Chemo session is generally harrowing. The meds are toxins running through your system making you miserable as it is. And here was my friend enduring the freezing cap over her head and biting into those ice chips. “Ow!” she screamed, shivering like an Eskimo. We all turned immediately to help gently remove the ice chips that were stuck on her tongue. How could we be so careless to not let those chips thaw for a while. Her tongue was bleeding. As the doc said, she looked like a “war veteran”, both literally and figuratively. She felt like she was trapped in a crevice atop K2, just like in the film Vertical Limit. 

Despite enduring the avalanche-like trauma, she was worried about the rest. “Careful with the dry ice baby. Wear the bloody gloves,” she’d bellow, while watching me draw out another freezing helmet from the cooler to replace the one she was wearing. Every helmet would return to room temperature in a span of 45 minutes. We had 3 helmets that were used in rotation to last through those 6 hours of chemo.

My friend’s mother hails from the beautiful city of Palakkad, which borders the two states of Tamil Nadu and Kerala. She is a strong lady, who has overcome many challenges - arthritis to hip replacement surgeries to more. Having willed herself to get off the clutches of being bed-ridden, here she was ready to sacrifice her long tresses for the cause of cancer. She wanted to stand by her daughter, who was willing Tilotama to go into hiding. “Will you help put me on to the right person to donate my hair?” my friend’s mother asked me.

Incidentally, I came across a 27-year-old guy, who saw his best friend’s mother fighting cancer and set up a foundation to help with hair donation. He came home to help fulfil the wish of my friend’s mother. 

Unfortunately, for us, the cooling caps decided to play truant. “I’m losing hair. I don’t like this life. How could I get this?” my friend cried in distress. “Nothing seemed to be on our side. Not even the cooling caps,” I thought, aggrieved. Tilotama looked at me tauntingly, “Did your witness turn hostile my darling?” 

I simply felt butchered.

Disturbing identity

“Is it hurting?” my friend asked as she helped me up after my fall on the middle of the road. I was laughing at myself. And there, I saw her face change all of a sudden. “There’s blood. Oh! My God! Let’s get you to the hospital,” she exclaimed. “Calm down. I seem to have scraped my knee. It’s nothing,” I said. She was hyperventilating and I was as cool as ice. She remained so until I got a Tetanus injection and covered the tiny wound with a ‘larger than life’ band-aid. The doctor at the hospital was outraged and I was left embarrassed.

Years later, I found myself stationed outside the operation theatre. My friend was inside undergoing an excision biopsy of the supraclavicular lymph node. The doc decided to extract the entire node so that this surgery doesn’t end up being insufficient and inconclusive. “Will that still guarantee a successful biopsy?“ we asked. “Well, if not, we would excise the lymph node from her left axilla,” said the doc.

I stood there wondering how much blood she’d lose. I stood there wondering if she’d have been as calm as I if I had been inside instead. I stood there wondering, “Why her?”

I don’t remember sitting. I was pacing up and down until the doc came out to say that the pathologist has confirmed the presence of disease cells in the supraclavicular lymph node. This means another excision of the lymph node from her left axilla wouldn’t be required. I thanked the surgeon profusely. But wait! Did he say disease cells?

Tilotama’s identity was confirmed and reconfirmed with a second opinion - Classical Hodgkin Lymphoma (CHL). I was told this is the best among the worst in the cancerous world. How is that a consolation? 

“I kept thinking Tilotama would turn out to be some sort of a chronic infection like TB baby. How naive am I!” she said. I wanted to tell her I was wishing the same. I wanted to tell her this is nothing. I wanted to tell her this is much better than even TB. I just nodded and kissed her forehead. 

We had to get set for her chemotherapy scheduled every alternate Thursday for a duration of 6 months. “Will you be there for every chemo with me? I can’t do this without you by my side,” she said. Her frail voice still echoes in my mind. And each time it does, it wrings my heart thousand times over.

Her already weak veins were not being considered to administer 4 strong chemo medicines - ABVD. “We’ll insert a chemo port on the right chest so that it’s easier to administer the medicines - which will run through IV for at least 6 hours,” the doc explained. Another quick surgery to insert the chemo port now.

When I saw her at the recovery room, she was shuddering involuntarily. I was in dismay. I howled for the nurse, who quickly ran in to insert a tube under her blanket. I realised the tube was blowing in warm air. I saw her body relax. “Mmmm, I’m fine now,” she said, “I was cold!” I just didn’t know how to react. I wanted to hug her and cry my eyes out.

I read a book on chemo, just to be aware of what to look out for. The list is smaller if you were to observe what not to watch out for. ABVD is standard protocol. A stands for doxorubicin (Adriamycin), B – bleomycin, V – vinblastine and D – dacarbazine (DTIC). The doc tried to introduce Brentuximab instead of Bleomycin. 

My friend was suffering from stage 4. The doc said that CHL was lesser of the evils because the stages don’t play a crucial role here. She has a 70% chance of guaranteed cure. Brentux could add another 10%. It was mighty expensive to procure this medicine, but will we say no?

Lady Luck has always turned her back the moment she knows my friend is approaching. And if the lady sees me, she’d flee. So, Brentux was not available during her first chemo. She was on AVD. Her sister and I watched over her like a hawk. She had all the side effects - from nausea to mouth ulcers, and extreme fatigue.

“Oops! I’m sleepy,” she’d say while dragging herself to the bathroom. She’d sleep half way, leaning on my shoulder. And when I wake her up gently, she’d smile and say, “Ha ha! I slept off.” She was like a baby. 

I am never good with babies. But I vowed to take care of this baby for the rest of her chemo sessions. “One down baby, give me a high five!” I said, as we walked home the next day.

Finding Tilotama

 

“How can you people cry at the drop of a hat?” my friend would say when she saw tears roll down my cheeks while watching an emotional movie together. I would give it back, “No point talking to people born without tear glands.”

I can still picture that smug look on her face.

After 19 years, she proved to me that her tear glands are functional. Well, sometimes they overperform. “I don’t know why I’m crying. I just can’t help it,” she’d say. And my stomach is in knots each time she sheds tears.

We went through every day of September with visits to the hospital at Electronic City in Bengaluru. It seemed like a 9 to 5 job everyday. Our KRA was simple: Find out who Tilotama is?

Blood tests after blood tests followed by nerve conduction tests to check the lesion in her right sacrum. Anti-nuclear antibody tests to check if Tilotama could be an autoimmune disease. Then came another inconclusive biopsy of the lymph node in the retroperitoneal space. 

“I don’t want to get poked baby. Let this pain remain. I don’t want to find out. Let me just be, please,” she’d exclaim. I would just listen. My mind and heart hunted for the right words. The effort was always futile. I kept wondering if she thought I was dispassionate. She’d search for answers as she looked at me in the eye, and I remained stoic. I hate myself each time I think of it. Been an anchor and reporter all my life and I had no right anchor link to be the perfect anchor in her life.

She couldn’t move an inch after that biopsy that turned ineffective. As I helped her move from the recovery room to the claustrophobic changing room, she said, “Turn around, I’ll change.” Within a minute, she added, “Wait, I think I’m fainting.” The next minute, she was in my arms. I saw her eyes closing. I saw my world crashing down. I couldn’t reach my phone that was ensconced in the pocket of my skin tight jean. Lesson 1: Please wear loose-fitting clothes during emergencies.

I was sweating profusely. I was having a panic attack. “Stay calm. Let’s gather our thoughts together. What do we do next?” I told myself. I counted from 10 to 1. Breathe in, breathe out. I heaved her up straight, held her in one hand, spotted a chair in that room, that was almost the size of a trial room at Westside, pulled the chair closer, turned her around and made her sit; all the while screaming into her ears, “Wake up! you’re going to be fine.” 

“Are you awake?” 

I slapped her cheek gently.

“Wake up! It’s me. I’m right here.”

Silence.

I tapped her shoulders. 

“Look at me, will you?”

I begged her.

“Please!”

She opened her eyes. “I think I blacked out,” she said with a faint smile. I wept in relief. I remembered the time when my mom (ages ago) had flashed a smile like this while in the ambulance, days before she passed away. 

I never knew what it was when people said their heart was in their mouth. Well, mine was out in front of me, smiling back at me. 

I never know till date how I found the strength to haul her out of that room with changed clothes. My relief was short-lived. 

Her sister and I literally carried her home. She was screaming in pain as she took every step inching closer to bed. As she sobbed, I felt a stab in my abdomen. I remained stoic again. Did she think I was heartless?

I called my parents (dad and my step mom, who is more than a mother to me). I broke down. I couldn’t stop. We, as a family, cried together. We spoke no words. Just cried. I didn’t sleep a wink that night. 

“Sleep baby, I’m fine now,” she said as she winced in pain again. Wished I could stab Tilotama in her gut and suck out her blood.

Entering the onco world

"You’ll never know my value even if I develop a tumour that leads me to death,” my friend would say in exasperation during our regular fights. And I was always quick to respond, “Promise me you’ll do that soon.” Our fight immediately faded with an outburst of laughter.

Least did I realise that the tumour would manifest itself as cancer very soon.

She has been the anchor in my life, a sounding board when I needed a vent, a devil’s advocate when I needed perspective, and an irritant when I needed distraction. 

It was in March, 2021, when she first complained of severe back pain. 

“You are gymming too much!” 

“Stop playing tennis!”

“Don’t sit on the computer!”

Blame game overpowered concrete solution. And she lost 3 months over physiotherapy and chiro, before she went to a spine surgeon. An MRI of the lumbar spine suggested nothing, with the needle of suspicion pointing to a problem with her sacroiliac (SI) joint. Her pain at the right SI joint gradually worsened, her walking speed drastically reduced, and her dependency on pain killers instantly increased. 

A sudden turn of events changed life upside down when a consultation with an orthopaedic, who suggested an MRI of the pelvis, introduced her and us to the world of oncology. Just as she was setting foot into her dream job at Google after months of struggle in Singapore while working for Apple. Least did this Googler expect a Googly of this sort. 

It was in August when she said, “The oncologist has asked me to do a PET Scan to see what’s wrong with me. The orthopaedic was suspicious of my bone marrow edema. I am scared baby.” My world shattered to smithereens. I was scared too. “This just can’t be true,” I kept telling myself. She’d call me at night and scream in pain, sometimes cry, and at other times wail in exertion. I patiently listened through it all, silently crying into my pillow, helpless. 

It was harrowing and this was just the beginning of it all.

“The PET scan report is out. I seemed to light up like a jellyfish. The doc wants me to do a biopsy of the left axilla. He says it could be lymphoma,” she said, adding that she has decided to do the biopsy the same afternoon. 

She takes time to get close and comfortable with people. I termed her anti-social when I first met her. She has changed since. I was pleasantly surprised when she said, “My friend Bernard was with me at the hospital this morning. He dropped me home.” However, she asked him not to accompany her for the biopsy. I told you she is anti-social!

Sometimes, the strongest and most daring of them all are the ones with unexpected fears. She suffers from trypanophobia. I wonder how she braved it all alone. We were never lucky in our lives. Nothing comes easy. Every milestone in our lives came after million struggles. This biopsy turned inconclusive. Her family wanted her back in India. She wanted to dive deep in her new job and role. And life wanted to make things more difficult for her.

She took the flight to India on August 29, resigned to fate… she needed help, she needed us… she was weak and feeble. I knew she didn’t want to leave Singapore. Luckily, her new team and boss at Google were supportive and decided to send her on a long medical leave. I was at the airport, bag and baggage, ready to stay with her and her family, until we, together, fix her.

She arrived on a wheelchair, unable to stand, walk or sit. To see her suffer on screen is so different from seeing her almost crippled in person. I felt every nerve in my body twitching as her joint throbbed with pain. 

Thus, started her journey in India with Tilotama, the name we gave to this disease, tentatively then assumed to be lymphoma.