‘I was going to be fine, I thought. Until I wasn’t’: Surviving breast cancer – and life after

It was a hot Thursday afternoon in June when my phone rang at work. It was an unfamiliar number. After perfunctory greetings, the voice at the other end said, “The results of your biopsy are back. I’m sorry to tell you, you have breast cancer.” Being the overachiever I’m told I am, I had not one, but two types of breast cancer – invasive and DCIS, which is present in the milk duct. Everything else the voice said just faded out.

After speaking to the disembodied voice, everything was a blur – oscillating between fast and slow.

Cancer is a crushing diagnosis and everyone deals with it differently.

Slowly, as I began to replay that phone conversation in the privacy of my own home, the weight of what I’d heard became unbearable, even as I shared it with my family. The irony of my situation didn’t escape me, because when I was a lab scientist I had collaborated on breast cancer-related research. I realised I was slipping into my lab scientist mode – it was usually what I did when confronted with difficult situations. I decided to view the future as a complicated experiment with some variables within my control, others dependent on my doctors.

The first step in my treatment was surgery – I had a lumpectomy, where the tumour is excised with some buffer of surrounding normal tissue. Pathologists examine the excised tissue microscopically and if the extent of normal tissue is insufficient, patients need a repeat surgery. Unfortunately, I needed that second surgery to get “clean margins”. Time stopped for me when I learned this disheartening news. The pathology report also revealed I had a less common, fast-growing “Her2 positive” cancer. Was this the reason that my mammogram from only six months earlier was apparently normal? It was the recent pain around my sternum that had prompted me to request additional evaluation.

About this time Connecticut was on a hurricane watch. Hurricane Irene was on our doorstep and while meteorologists were making dire predictions about the weather, I was scheduled to see an oncologist. In preparation I devoured whatever literature I could find – my science hat was firmly on.

For my first visit, I sat in a cold grey room in an oversized hospital gown, reviewing my questions, trying to keep it together. It was getting harder as the days went by. Waiting in a hospital gown is never a pleasant experience. Waiting in a hospital gown for an introductory meeting with an oncologist is orders of magnitude worse. After introductions, we reviewed my case and treatment plan. There would be 17 cycles of chemotherapy, three weeks apart and as he continued to speak, I quickly did the math: 17 times three, that’s 51 weeks of my life controlled by cancer. He said I would need to have a surgically placed port in my chest below my collar bone. It would be the route through which my chemotherapy would be injected, getting to my heart efficiently, enabling a rapid distribution of the drugs through my body.

He said I’d lose all my hair. This was the least of my concerns. In fact, I had said this to all my friends who had asked how I felt about potential hair loss when I entered this road. He said I’d have to get a regular shot to boost my immune system which would be impaired after each chemo cycle. The shot would help me to keep up as much of a pre-diagnosis social routine as I could manage. He said I might experience nausea and prescribed an anti-emetic. I told him I wanted the strongest one available, and based on my research, what he was prescribing was not strong enough. But he was confident and I deferred to his experience.

I’ve lost count of the number of appointments I had to make to get baseline MRI and CT images of my brain and the rest of my body, before starting chemotherapy. Port surgically placed, it was now almost August and hurricane Irene was still churning in the ocean and had not yet hit the Connecticut shoreline. The weather was calm when we arrived for my first round of chemo. The nurses were kind and generously talked me through my fear of needles – even a port needs to be accessed (the medical term for being poked). It was overwhelming to be hooked up with all those tubes and to have to ring a bell each time I needed to be escorted to the bathroom – the medications tend to throw off your balance. When we got home from the chemo, it was close to 5 pm and it felt like it had been a regular but extremely exhausting workday, except I’d been knocked out in a chemo chair, hooked to an IV, and a little off-balance.

If this was going to be what chemo was, I was going to be fine, I thought.

Until I wasn’t.

The next day I was on my bathroom floor, vomiting, crying and writhing in pain. I was furious. The damn antiemetic had not worked despite the oncologist’s confidence. After what seemed like an eternity of vomiting, I got into bed from an exhaustion I had never known in all my 50 years on this planet.

As dramatically as I had been vomiting on my bathroom floor, hurricane Irene came soon after.

Violently.

A significant part of the shoreline lost electricity.

At that strange twilight-y time of day, with no electricity in the house, we decided to watch a DVD on my laptop until the battery died. I fell asleep that night thinking that other than my nausea and Irene, things had been going well for me and I was hopeful for the coming days. Particularly because when I’d wake up the next day it would be September, and I love September, and people are generally in good spirits in September. Maybe it’s the beautiful fall foliage that does it. You could say I fell asleep with the clichéd song in my heart.

The next morning on September 1, I woke up a completely different person. None of that song in my heart stuff. I woke up with bunches of hair on my pillow. I touched my hair and more hair came out in my hands. I was shocked. I wept so hard it surprised me. Because I had been clear that losing my hair had been the least of my concerns. And yet here I was, crying uncontrollably. I couldn’t bear the thought of waking up each morning with bunches of my hair on my pillow, so I needed it all off. But with downed power lines thanks to Irene, it was impossible to find an open salon.

After dialing what seemed like endless numbers, I got through to one salon. The woman said she couldn’t take anyone because she had no electricity at her salon. I pleaded and said I need my hair off today, because this morning I lost bunches of it thanks to chemo.

She told me to come over right away.

Her salon was like a silhouette – the only light in the room came from a window on the far wall. It was a small unassuming place with three chairs. She welcomed me as soon as I walked in and took me to a chair. She could see I was shaken and looked me in the eye and said, “We’ll get through this. I’ve walked in your shoes seven years ago.”

And with that, she got her razor out and started shaving off what was left on my head.

Once again, I wept convulsively as I saw my hair falling around my feet. She had to stop periodically so that she wouldn’t accidentally nick me whilst I wept. When she was done, she refused to accept payment or a tip, and instead gave me a huge hug and said, “You’ll get through this.”

Somehow, this woman had given me some confidence with her quiet demeanor. It felt like she’d put her faith in me.

I left the salon and sat in my car and looked at myself in the mirror and realized that perhaps the only way I was going to handle the next 50 weeks of my life was by giving my all to this exquisitely sensitive experiment that had been forced on me, with my lab scientist hat on my now bald head.

Soon it was time for my next round of chemo and as I lay there hooked up to all the tubes, a woman walked into the infusion centre with her two teenaged children in tow. She looked bewildered as she was going to start her treatment the following week, and the first thing she said to me was, “Wow, you still have your eyebrows!” I told her that while they still existed, they were patchy and a tenth the size of what they were in July. She laughed and asked me many questions – she appreciated that I gave her honest answers. Because when I was in her shoes, I too wanted real answers, not dressed up ones.

Cancer treatment takes you down a daunting road, weaving its way in unexpected manners. Not all patients receiving equivalent treatment respond equivalently – some might lose hair, others might not; some might gain weight, others might lose weight. These are merely the external manifestations of the unspeakable turmoil each patient goes through. One thing I learnt over the course of my chemo cycles, is to forget about predicting what the next one is going to feel like – each time I thought I’d figured out how my body was going to respond, I was surprised. Each cycle had its own low points. For example, cycle one was replete with horrid heartburn and abysmal neutrophil counts and mouth sores; cycle two was horrible nausea with an extremely fragile esophagus, complete baldness, and excruciating bone pain and loss of taste; cycle three was worsening mouth sores and esophagus, horrible gas pains and bone pain, and horrible pooling of grossly sweet saliva; cycle four was continuing bone pain and the beginnings of peripheral neuropathy for my fingers; by cycle seven I’d lost many of my nails and those that I hadn’t, were profoundly fragile.

By the time I reached cycle eight, it was time to start radiation treatment. It was my lowest point – the shred of dignity that I held on to when being poked and prodded disappeared once I started my radiation treatment. Prior to treatment, tiny tattoos were placed to help the radiation technologist align the beam during treatment, limiting radiation to the heart and lungs.

The time of radiation exposure was short, but it was the most vulnerable I felt. I’d walk into a large room wearing the top half of a hospital gown over my trousers and would be greeted by the technologists who very kindly asked how I was feeling and how I’d handled the last radiation cycle — radiation treatment was every day for six weeks. My answer consistently was, “Exhausted!” I had no idea that a brief exposure to targeted radiation could wipe you out for the rest of the day.

They worked quickly and would have me lay down and ask me to take off the gown for the radiation. The entire process, from the moment of entering the radiation room to exiting it, took no more than 10-15 minutes – the proper alignment with the tattoos for reference is what took the longest; the actual period of radiation was only a couple of minutes. But every day, I dreaded entering that room so deeply, that the joy I felt on the last day was immeasurable and rang true when I struck the gong that patients ceremonially strike, signifying completion of that step in that part of the year-long treatment.

Listening to other cancer patients and survivors share their experiences, I have learnt that a cancer diagnosis and subsequent treatment can strengthen some relationships and destroy others and that fretting over lost relationships is exhausting. Often, time helps restore those relationships, and if it doesn’t, most cancer patients and survivors hold on to the memories of what made those relationships important in the first place. Because like a pre-chemo and pre-radiation ravaged body, there were better times.

Recently, during a conversation with patients and survivors, I was reminded of how challenging it can be to talk openly about cancer. Some felt discouraged from sharing their thoughts because they’re told to “get over it” now that treatment is done. People say all kinds of uninformed things when they’re uncomfortable.

If you haven’t had the lousy luck to get a cancer diagnosis, you don’t know what it does to your life. Seeing someone close to you go through treatment is hard, but it’s not the same. Even the most optimistic cancer survivor will have moments of feeling like the sword of Damocles is hanging over them. Those moments diminish but never disappear. So, let’s not tell someone to “get over it”.

What can a bystander do for a person diagnosed with cancer? Keep it simple. The well-intentioned non-medical suggestions on what to eat, how to exercise and what attitudes to have through cancer treatment are sometimes best kept to oneself until solicited. Through it all, the most important thing one can offer is kindness and presence. Sometimes just being there in silent support speaks louder than any well-meaning advice ever could.

Life after treatment is a “new normal”, more like an abnormal – a mix of vigilance, adjustment, and a whole new vocabulary. Despite low white cell counts and sparse hair, I’ve found new strengths – I'm a better cyclist, patient advocate, and science communicator. The weight of a cancer diagnosis is multiplied by inaccessible information. Many cancer patients, being non-scientists, are overwhelmed by what they hear in the doctor’s office, on the news or online. Consequently, patient advocacy and science communication guide my life more now than they did in the “before” days.

October is Breast Cancer Awareness Month.

Deepti Pradhan is a scientist and patient advocate, dedicated to taking scinece to non-scientists through her science cafe.