Meet Carol - Senior Manager, Operations & Customer Solutions
Bristol-Myers Squibb Canada
Cancer is a scary word, possibly the scariest in the modern lexicon. No one wants to hear it, believe it, know about it and certainly not be diagnosed with it. Everyone still thinks it’s a death sentence, but in reality, stats show that close to 70 per cent survive five years after being diagnosed. Then there are the other 30 per cent.
About 11 years ago, Carol watched her uncle, a big hulk of a man, shrivel away, mind and body, from non-Hodgkin’s lymphoma. It’s actually fairly treatable when diagnosed early, which he was. The nail in his coffin, quite literally, was that the hospital forgot to convey the test results to his physician. Carol still remembers the hollow eyes of the skeleton he had become staring out at everyone blankly as he left the world. At the time, she didn’t think it had marked her to the extent that it did.
“Carol works for those who aren't quite as lucky as her.”
Fast forward to January 2010, when Carol took her mother to the ER. Carol’s mother had been behaving strangely for a little while, mixing up words, walking crookedly, bumping into walls, forgetting to eat... they all thought she had a stroke. In retrospect, she would have been grateful for a stroke. Carol’s mother, the healthiest person she knew, the woman who walked everywhere (if it were less than 5kms, she couldn’t understand the value of driving to her destination), the woman who didn’t let anything that wasn’t a super-food pass her lips, the woman, who at 70 years old was caring for Alzheimer’s patients, had an 8 cm mass in the centre of her brain.
At first doctors said it could be benign, although not likely. It wasn’t. Then they said it could be lymphoma – treatable – or a glioblastoma multiforme (GBM), which was not treatable. It was a GBM. They gave her three months MAXIMUM to live. Neither Carol nor her mother have ever been known to give up on anything without a fight. And fight they did.
Round one, Carol thought, was to get her mom into a clinical trial. On February 10th, 2010, her mom started treatments. Radiation every day for six weeks where they strapped her head down to a metal table with a mask that would scare Hannibal Lecter. There were multiple rounds of an oral chemo drug. And then there was a study drug that was infused into her every couple of weeks. Doctors warned their family that the protocol would be tough on her physically and that she might be too old and frail. Carol thought, “They don’t know who they’re dealing with.”
The first few weeks were a real struggle for Carol and her family. Her mother needed care 24/7. She suffered some side effects from the medications, and her personality was still altered by the tumour pressing on many parts of her brain. Her mother was downright belligerent at times. But, still, Carol could tell that she was getting better.
On March 1st, Carol saw her mother come back to her. When they went to pick her up after work to take her to radiation, she was dressed, coherent and focused. The family arrived at the hospital and headed to the bank of elevators, which their mother had to take. Carol noticed her mother look at everyone like they were completely nuts. Carol’s mom headed straight for the stairs, as she would have always done in the past, and walked down them easily with no help from anyone.
She continued to improve every single day. In April she had her first MRI since her diagnosis. The family was sure the tumour had shrunk, but to what degree? Carol emailed her neurosurgeon, who she considers a gift from God, asking him if he had happened to see her mother’s scans. He replied to her email very quickly. “Tumour has shrunk – a lot. It is very impressive.” These were the sweetest words Carol had ever read. The tumour had shrunk to less than 1 cm in diameter.
Carol raced to her mother’s home to share the news with her and the rest of the immediate family. Carol, being Carol, was sobbing like a fool. Her mother looked at her and smiled with a mix of victory and humility. Her mother said, “I think I would like to take my car out for a drive.” She had not driven in months. It was her first step back to independence.
The 10 months following had its challenges. Side effects, appointments, tests, more tests, and the fear of the next MRI results. But they were also some of the best times Carol’s family ever had. They were closer and stronger and more united than ever. They celebrated every event, never knowing if it was the last time they would be able to do so. For Carol, she promised herself that she would make her mother laugh every single day that she was still alive. She kept her promise. Laughter is a great medicine.
Unfortunately, in March 2011, Carol’s mother had a stroke. Doctors said that the arteries in her brain had been damaged by the radiation treatments, causing the stroke. She could no longer participate in the study. It wasn’t long before the tumour came raging back with a vengeance. They lost her on July 13th, 2011 at 3:25PM, 18 months after being diagnosed. And that’s all she has to say about that.
Carol’s experience with the Big C didn’t end there.
Over 20 years ago, she had to see a dermatologist to treat a rash on her leg that she had gotten while scuba diving in Barbados. While treating Carol, the doctor noticed that she was “very moley” and wanted to see her once a year. She didn’t understand the implications at that time, but she went dutifully. Eventually, the doctor wanted to see her every nine months. Over the years, the doctor had removed 15 or so moles from Carol’s body, with no issues. Carol was smart enough to wear sunscreen when she was outside for prolonged periods of time and to stay out of the sun during peak hours. But there was no question that Carol chose sun over shade. She loved the warmth and the beautiful brown colour her skin would turn. She actually took great pride in her ability to tan so well! Her mother used to say, “You could get a tan in the northern wind.”
In April 2013, Carol went for her usual check up. Her amazing doctor removed a mole from her thigh, and she went off to Florida a few days later. A few weeks after she got back, Carol’s doctor called to tell her the mole had been abnormal. That was the word she used, abnormal. She said that Carol had to have the skin around it removed to make sure they got all the abnormal cells. She didn’t think anything of it. The dermatologist sent Carol’s file to a doctor at the Jewish General, whose office called to book my appointment. When she arrived, she realized she was going to Dermo-Oncology. Carol through to herself, “WHAT?”
She sat in the surgeon’s exam room and took out the pathology report from the file on the door. This is when Carol’s world crumbled around her. It read “mainly in-situ with a minute focus of melanomatic cells, stage 1A.” A skin re-excision was done a month later. Three inches long, 25 stitches. Carol was told that she had a five to seven per cent chance of a second “abnormal” mole in her lifetime. Her dermatologist started to check Carol every six months.
In February of 2014, another mole, another pathology report, same diagnosis and another re-excision. It was on Carol’s left knee this time. This one was 4 inches long with 32 stitches. Now her doctor checks her every four months.
Carol leads a very different life now. She looks for vacation destinations where the weather isn’t very nice, or what Carol used to consider nice. She has sunscreen in her purse, in her car, at her desk, everywhere. Carol wears hats and clothing with SPF in them whenever she goes out for a walk. Sunglasses are a must for her, too. Carol no longer attends outdoor events unless there is a tent or umbrella available. She lives with the anxiety of what will come of her next mole check-up.
As difficult as the last few years have been for Carol, she knows, without question or doubt, how lucky she is. Lucky to have been diagnosed at the earliest possible moment. Working at BMS, working so closely with the Opdivo, Yervoy and Patient Support teams, Carol truly understands the benefits of early detection. She also knows that the clinical trial her mother participated in gave her family an unforgettable year of memories that she wouldn’t trade for anything, except, of course, to have her still with her.
Carol works for those who aren’t quite as lucky as her.