Lessons Learned Outside the Bell Curve: The Story of Tricia Antonini, 20-Year Cancer Warrior
     It was a Saturday in summer of 1997 when Dr. Chris Brown, then 41, reported for on call duty at the Tom Baker Cancer Centre in Calgary. He picked up his patientsâ medical charts and commenced his rounds at the room of a new leukemia patient. As he strode into the room, he noticed a young woman who appeared to be in her early twenties, sitting on her hospital bed poring over a mess of books spread out before her, while her mother hovered nearby. The patient had diamond-blue eyes and apple cheeks that were swollen like those of âa chipmunk, due to extreme mucositis,â a condition that often affects chemotherapy patients and leaves them with swollen faces and excruciatingly sore oral tissue. In his naturally cheerful manner, Dr. Brown introduced himself to the patient saying, âHello, Iâm Dr. Brown, and Iâm on call for the weekend.â The young woman looked up at the doctor and regarded him with âlaser beams.â Without speaking, the young woman communicated so much in a single look; strength, intelligence, determination. Her name was Tricia Antonini and she would go on to demonstrate all of these qualities in spades over the next 20 years.
The young woman looked up at the doctor and regarded him with âlaser beams.â Without speaking, the young woman communicated so much in a single look; strength, intelligence, determination. Her name was Tricia Antonini and she would go on to demonstrate all of these qualities in spades over the next 20 years.Â
Triciaâs true story begins 23 years before that moment on May 21, 1974 at Pasqua Hospital in Regina, Saskatchewan. On that spring day, Lou and Marie Antonini gratefully welcomed their second child, a baby girl, whom they called Tricia Louise. Dad Lou Antonini, a burly man with a thick moustache, remembers the day they brought their daughter home, âThen, we had one of each. She filled our family.âÂ
Mom Marie Antonini, a pretty woman with dark hair and wide green eyes, says, growing up, Tricia was an easy-going child who was always busy with extra-curricular activities and who never subjected them to âthose scary teen years.â When asked if Triciaâs incredible strength ever revealed itself early on, Marie recalls a time when Tricia overcame, seemingly on her own, an instance of grade-school bullying. As a gifted child, Tricia excelled in school and often put her hand up in class which sometimes led to her being teased and ostracized by her classmates. Marie remembers, ââŠone of the teachers spoke to me at an interview and said, âI donât know how she comes to schoolâ, and I didnât know what she was talking about⊠[Tricia] wasnât really sharing with us, so we didnât realize how bad things were, but you know she just stuck through that year and then kind of went on⊠I almost think it even strengthened her.â
ââŠone of the teachers spoke to me at an interview and said, âI donât know how she comes to schoolâ, and I didnât know what she was talking about⊠[Tricia] wasnât really sharing with us, so we didnât realize how bad things were...â Â
When she reached high school, Tricia began to shine. She had moved on from her mean girl experience and found a group of good friends. Among those friends was Tasha Westerman whom she met in grade 10 and whom she remains best friends with to this day.Â
Tricia participated in a number of activities from school council to band to swimming and demonstrated talent in art and music. In addition to playing the flute, French horn, and jazz piano, Tricia loved to create art and was regularly called upon to hand-draw many of the schoolâs event posters. Best friend Tasha Westerman remembers how Tricia was in high school, âShe was always really social, always willing to help out when others needed it. She would stay after school to help with events, organizing or fundraising or anything.â
High school also gave big brother Brandon Antonini, now 46 and a father of 11-year-old twin boys, new reasons to look out for his pretty, younger sister. âI found out she went on a date with one of my friends⊠There was nothing good about it, it wasnât allowed and was quickly snuffed out!â Always her âprotectorâ since childhood, Brandon would later prove just how much that title meant to him when he would become the donor for not one but two of Triciaâs unheard of three stem cell transplants. When asked about his childhood with Tricia, Brandon warmly recalls one summer in the early 1980s when they watched National Lampoonâs Summer Vacation with Chevy Chase close to two hundred times and the way Tricia always supported him throughout his athletic endeavours as a competitive swimmer.
Upon graduating from high school (and much to her art teacherâs dismay), Tricia chose to pursue a career in accounting at the University of Regina and then began working for PwC through an accounting fellowship in 1995. Upon completing her degree, Tricia moved to Calgary to continue working for PwC Calgary in January of 1997.Â
There, while still in her first year as a chartered accountant articling student, Tricia signed up to play in the firmâs annual golf tournament.
Though she managed to play all 18 holes, Tricia collapsed at the end of the tournament and was rushed to Red Deer Hospital where she awoke feeling embarrassed. Thinking perhaps she had had too much to drink, mortification quickly turned to panic when she was told by doctors she had leukemia and was transferred by ambulance to the Tom Baker Cancer Centre.
A biopsy confirmed this suspicion a few days later and she began her first chemotherapy session. Before beginning treatment, however, she was adamant that she wanted to write her final exam to become a chartered accountant. Cancer or no cancer, Tricia had plans. Â
Together with her doctor it was decided Tricia would cancel her registration in an exam prep course but still write the qualifying exam, in a separate room away from the other students to mitigate risk of infection given her immune-suppressed state. Dad Lou Antonini recalls this trying time and his daughterâs determination to continue with her plans despite the life-threatening diagnosis, âI remember when she was first diagnosed, sitting on the floor, so sick from chemo, still studying [for her exams.]â Some months later Tricia received her first stem cell transplant (her brother Brandon was the donor) and a year later she wrote her final accounting exam (a process that takes 4 days and 4 hours of exam writing per day) and passed.
In December 2002, when Tricia was 28, she threw a Toast to Life party to celebrate 5 years of cancer freedom. She welcomed her friends, family, and doctors, and thanked everyone for their support. She also encouraged them all to âengage the momentâ and âtoast lifeâ every day.
Three weeks later, Tricia felt tired and her lips looked pale. The leukemia had returned.Â
As Tricia underwent chemotherapy for the second time, her doctors considered whether a non-related stem cell donor might improve her chances of remission. A match was found. The donor was a man from Germany. Two years later, she would find out his name was Oliver.
Once Tricia was in remission again, she travelled to Europe for the first time and met Oliver in his small town outside Bavaria, Germany. She returned to work and continued volunteering with First Connections, a support program through the Leukemia and Lymphoma Society of Canada, as a peer counsellor for newly diagnosed leukemia and lymphoma patients. She resumed her duties as Board of Trustees member for the Alberta chapter of the Leukemia and Lymphoma Society of Canada which she helped found earlier in 2002. Â
Friend and fellow peer counsellor and Provincial Advisory Council (PAC) Cancer member Lorelee Marin remembers how dedicated Tricia was to improving the lives of Albertans facing cancer, âTricia always shared her perspective in a beautiful and compassionate way, she was always focused on the "patient-first" approach to care and [on offering] solutionsâŠâ
âTricia always shared her perspective in a beautiful and compassionate way, she was always focused on the "patient-first" approach to care and [on offering] solutionsâŠâ
It was 2004 and life was good, but it was about to get even better. Triciaâs employer made her an offer she couldnât refuse: relocation to Manhattan for three years to work on an international project with PwCâs global head office. Tricia didnât hesitate for a New York minute. She embraced the opportunity and fearlessly hopped on a plane to New York City in the summer of 2005.
Once there Tricia leaned into her career and, in her free time, pursued her dream of acting. She walked the cityâs endless street blocks and found something to be amazed by on every corner. She met people from different parts of the world and grew her circle of international friends. She sat in restaurants where tables were jammed too close together and she fell in love with the pad thai where the restaurant employees recognized her by her weekly order. Tricia was in the zone.
About a year after moving to New York, she was preparing to leave for a weekend in the Hamptons when she got a fever. Another leukemia relapse. Triciaâs relapse was diagnosed on July 17, 2006 at the Memorial Sloan Kettering Cancer Centre in New York, but opted to return home to Calgary for treatment so that she could be near family. She flew home with her mom on July 19, 2006 and drove directly to the Tom Baker Cancer Centre where she met with her doctors. The following is an excerpt from Lou Antoniniâs journal about his experience with Triciaâs second relapse:
The doctors then told us that a third bone marrow transplant would not work⊠and that there were two courses of action to take: One, enjoy the balance of time she had left by extending it as long as possible with transfusions of blood products. (This way she would not go through the hell that chemo creates, and [live] a few months, in relative comfort. [Two], hit it hard with two sessions of chemo and then, if that got her to remission, go into a third 'maintenance' phase that would be continuous and could extend her life to a few years instead of a few months, again in relative comfort. The problem with the second choice was that she could go through the first two phases of chemo and all the torture and still not be in remission.
Tricia was not ready to give up and chose to fight again.
And fight she would.
On July 30, 2006, just 10 days into her first session of chemo and with next to no infection-fighting white blood cells, an innocuous black mark appeared at her central line incision.Â
Her blood pressure began to drop and she was quickly admitted to intensive care. In just one hour the black mark had bloomed and was identified as necrotizing fasciitis or, as it is better known, flesh-eating disease. Hospital staff prepared Tricia for emergency surgery which was needed to scrape away the deadly bacteria before it had any more chance to spread. After surgery Lou Antonini went to see his daughter and broke into tears at the sight of her:
When Tricia returned from surgery she was on life support with both breathing and feeding tubes in her throat, a catheter in, and a wound the size of my hand that extended from just below her Adamâs apple down about 5 inches and 8 inches across. Everything had been removed including her front neck muscles and it was at least an inch deep. I remember after seeing it for the first time I cried on and off for about three hours.
Tricia was kept on life support and in the five days following surgery developed two cold viruses as well as pneumonia. With no immune system to even fight a cold sore Triciaâs condition was grim.Â
Doctors advised the family to prepare for the likelihood that Tricia would not survive her stay in intensive care. The doctor added that even if she did survive, they would not be able to continue with chemotherapy which would leave her only a few months to live, at best.Â
Devastated, Lou and Marie Antonini sought the opinion of Triciaâs first oncologist. Triciaâs doctor agreed with the original prognosis but noted that Triciaâs white blood cell count had risen unexpectedly overnight. Cautiously, the doctor told the distressed couple that there may be a glimmer of hope if Triciaâs white blood cell count continued to rise.
Over the next two weeks, Tricia remained in the ICU with her neck exposed. Her parents took alternating shifts and together stayed at her bedside 24 hours a day, seven days a week.
As days went by Triciaâs white blood cell count eked gradually upwards. On August 11, 2006 her breathing tube was removed. The next day she was discharged from ICU and sent back to Unit 57 at the Tom Baker Cancer Centre.Â
Things were starting to look up. A biopsy was done to determine the state of Triciaâs leukemia and whether she could resume chemotherapy. When the biopsy came back, the results revealed that Triciaâs leukemia was in remission!
Despite only 10 days of chemotherapy, the plan had worked. Tricia and her family were ecstatic and breathed an enormous sigh of relief that she was stabilizing. Â A couple of months later, after extensive physiotherapy, multiple complications, a skin graft, and removal of her feeding tube, Tricia was discharged.
After Triciaâs harrowing experience in the ICU, she and her parents packed their bags for Maui.
According to Tricia, when they arrived to the island she could barely walk on her own, âI had to use a wheelchair to make our connection, so my mobility was still in a state of recovery... When we went down to the beach, I had to get help. By the end of it I was snorkeling by myself, and I could get up by getting onto all fours. I got so much stronger in that period of time. We were like, How can we get back here? Itâs an energy of different sorts, and itâs healing.â
One year following the familyâs trip to Maui, Tricia was approved for a clinical trial thanks to the combined effort of Dr. Brown and the team of doctors in Calgary and Dr. James Young, attending physician, Bone Marrow Transplant Service, Division of Hematologic Oncology, Memorial Sloan Kettering Cancer Centre in New York. A year later, on June 12, 2008, Tricia received her third stem cell transplant (a claim only a handful of people around the world can make.) Once again, her protector Brandon Antonini was the donor.
The next six years would be filled with the blissfully ordinary events of everyday life: birthdays and baby showers; drinks with friends and dinners with family; weddings and funerals. There would be highs and lows (or peaks and valleys as Tricia and Tasha came to refer to them): returning to New York to visit with friends, helping Tasha through her own cancer diagnoses, making Avenue Magazineâs list of Top 40 Under 40, saying goodbye to her Grandmas Mary and Amanda, returning to Maui with her family, and saying goodbye to her friend Ryan, Tashaâs first husband, to brain cancer.
In 2011 Tricia joined Alberta Health Servicesâ Patient Advisory Council â Cancer (PAC â Cancer) and used her remarkable communication skills, business acumen, and first-hand experience as a cancer patient to improve cancer care for Albertans across the province. Lorelee Marin, fellow PAC â Cancer member, remembers the way âTricia showed us all how we [could] make a difference.â
And though Tricia knew she was living outside the bell curve and that every day was a gift, she was completely unprepared for what she was about to learn. The following is an excerpt from Triciaâs blog published November 2, 2014:
I haven't posted for well over a year - because life has been good and busy and no major health developments to report. Â I even just a month ago was in NYC speaking at the Sloan Kettering Cancer Centre's transplant celebration, reporting that 6 years and 3 months later, no sign of leukemia. Â Was transferred into the "long-term patient" clinic at the Bone Marrow Clinic in July. Â Leukemia seems to be quiet right now.
Unfortunately a couple days ago, I found out I have a new challenge to deal with - Breast Cancer. Â Yep. WTF. Â Exactly. Â My first mammogram at age 40 prompted an ultrasound and then biopsy last Monday and Thursday afternoon I went to the Bone Marrow Clinic and got results - invasive ductal carcinoma. Â Just about lost my breath and my mind at that moment. Â Totally believed the scleroderma (skin thickening GVHD from transplant #3), scar tissue from 4 central lines in my chest over 17 years and oh yeah, scar tissue from the surgery and skin graft I have in my neck and chest following flesh-eating disease was showing up in the ultrasound as unusual. Â But probably the most convincing argument that this would NOT be cancer, was that I already did that. Â 3 times.
Once more, Tricia was facing cancer. Her course of treatment for her breast cancer involved a bilateral mastectomy and chemotherapy. It was the doctorsâ belief the cancer had not metastasized.
Once again life marched on and Tricia marched along with it. She went back to New York in October of 2015 for Memorial Sloan Ketteringâs 20th Annual Transplant Survivor Celebration, an event close to Triciaâs heart. In January of this past year, the Antonini family made their annual pilgrimage to Maui, home of Tommy Bahamas, one of Triciaâs favourite restaurants, and the site of her incredible, 2007, post-ICU recovery.
This past April Tricia began to experience headaches and went to the emergency room to get checked out. She was told she had five tumours in her brain. Two days later Tricia posted an update on her blog about the most recent development in her health. At the end of her update she shared a piece of writing that she had written in conjunction with a painting she had made entitled The Black which Tricia painted to convey the pain and suffering associated with loss. Below is an excerpt of Triciaâs The Black:
The Black by Tricia Antonini
While I would agree with people who say that I am a positive person, and that my ability to stay positive has helped me overcome many challenges, I feel the need to articulate the depth of moments where it is impossible to be positive, or where I have felt simply too tired to live⊠I used to believe, or possibly hope, that life was overall fair⊠I donât believe this to be true anymore.  I think shining the spotlight on the darkest moments, understanding, in detail, how we managed to get to the edge of the water we almost drowned in, how we didnât bleed to death, how our heart managed to heal after being torn to pieces, makes us more capable of surviving the next hit.  No matter how many times we are hit.  And focusing on how black the black is makes the white extraordinarily more vibrant.
Ironically, Tricia wrote The Black three weeks before learning about her metastatic tumors.
Tricia, now 43, is currently in Calgary receiving palliative care for metastatic brain cancer. She maintains that while her breast cancer diagnosis felt âlike someone came [up] behind me and smacked me in the headâ and that learning about the metastatic brain tumours felt too foreign and too surreal to seem possible, she says she is not consumed by the questions that haunt so many cancer patients.
âI have had moments where I would say, Well, why is this happening? ⊠Why me? Why not someone else? Because Iâve been doing everything I should be doing when you get told you have cancer. Iâve been volunteering, Iâve been giving back, Iâve been helping to raise funds, Iâve been a mentor for people, Iâve stepped back from my life and changed what Iâm doing at work⊠Iâve been really listening, and Iâve been making the changes that you should make. And having the perspective that you should haveâŠâ But then Tricia realizes, â⊠thereâs really smart people working on Why? ⊠And theyâve been working on it for decades, and if they havenât figured it out, Iâm not going to figure it out today. And I have no energy, anyway! So why would I waste it on a question that is impossible to answer?â
Tricia continues our conversation by discussing the importance of research, the narrowness of âThe Cureâ, and her own personal thoughts on cancer:
ââŠpeople say, Well, thereâs so much money that goes into research and they still havenât found âThe Cure.ââ For one thing, weâre talking about thousands of diseases, not one disease. Itâs grouped [under] this big name called cancer, but it is such a misnomer because they are so different, all of them⊠the focus shouldnât be about funding âThe Cureâ (and if we donât find the cure, weâve failed), it should be about funding more moments, creating more moments for people. I mean for me right now, they say [my cancer] is terminal, but you could give me more moments. My friend Ryan who passed away, Tashaâs late husband, he survived for about 15 months longer than they expected [thanks to a clinical trial] before he passed away. The moments that he had in those 15 months, unbelievable! âŠthat âmore momentsâ idea is so true and it extends beyond cancer. Whatever we need to do to have more moments, particularly more potent moments [is] a big deal. To have more moments when the prognosis shows youâre not going to have any more? Thatâs still miraculous. Itâs just as miraculous as a cure.â
When asked about how the passage of time feels now that she knows itâs dwindling, Tricia attests that âlife is not about a timeline, itâs about potency.â
She believes that people are âcanvasses walking aroundâ and for every moment that we engage fully with the world and allow ourselves to truly be seen, we exchange a bit of paint with one another. Tricia believes that you can either go through life a âblank canvasâ or become a âJackson Pollockâ. Â Time, Tricia says, is irrelevant. Moments are what matter. Potent moments. And lots of them.
Last week on November 22, 2017 at the Tom Baker Cancer Centre, surrounded by her friends, family and medical care team, Tricia awarded fellow philanthropist Elaine Moses with the inaugural Tricia Antonini Award for her contributions to creating a positive and hopeful environment for patients undergoing treatment on Unit 57, Foothills Medical Centre (FMC) and the Blood and Marrow Transplant (BMT) Clinic in Calgary, Alberta.
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