Alex Mathisen had lilies at her wedding in August 2012. Bright orange ones.
“My dad often bought my mum lilies, which is why I think I love them so much,” said Mathisen. “Growing up in London, he would pick them up from a train station stand on Fridays. She loved freesias, too. And her mum loved yellow roses.”
There’s something about flowers – their beauty and color and simplicity.
“We would often take fresh-cut flowers to friends when going for a visit. It’s amazing how flowers can make you smile, usually because they invoke good memories,” said Mathisen.
Good memories, like weddings. As the owner of Soul Spark Events, Mathisen works with engaged couples to bring their wedding day vision to life.
“Flowers help create the setting. They’re so dynamic and diverse,” she said. “Wildflowers say casual and more free, whereas roses are more traditional and sunflowers add color and an element of fun.”
Mathisen works closely with local florists to ensure various components of the wedding – the alter, centerpieces, even the cake – connect with floral elements. But after the “I dos” are said, the cake is cut and the dance floor clears, what happens to the flowers?
“Most couples don’t want to take home all the arrangements, so I ask them if I can take them to the cancer center for the patients to enjoy,” said Mathisen. “It’s almost an automatic, ‘Yes, we’d love to do that.’ And I love to do it, too.”
A petal falls too soon
As if a page from a love story, a woman from New York meets a man from Paris while in London. Elaine Ciruzzi and Bernard Pallut fell in love, got married and had children, identical twin daughters Alexandra (Alex) and Thea, and a younger daughter, Laura.
“My mother was a lover of languages and all things cultural – she loved classical music, opera, art galleries, ballet. She and my father shared all these interests,” said Mathisen. “I remember afternoons spent baking and doing arts and crafts together. And we traveled as a family often.”
But in 1988 at the age of 37, and with so much to still teach and show her girls about the world, Mathisen’s mother passed away from uterine cancer.
“When you’re 11 and lose your mum, it’s incredibly difficult,” said Mathisen.
Extended family members had passed of cancer, but Elaine was the first to have uterine cancer. She was diagnosed a few years before she passed.
“My mum was really sick for a couple of years,” said Mathisen. “She went in every three weeks for chemotherapy, and lost her hair. The cancer metastasized and it was terrible. There were times when she couldn’t get out of bed. Somehow we were able to all go on holiday together in August (of 1988), and then she passed in September.”
Blossoming into the world
After graduating college, Mathisen spent a decade traveling back and forth between Europe and the United States, working as a travel guide for a number of years all over the country and across the world.
“I’m a planner, definitely very logistical,” she said. “My father used to love planning and hosting parties. We had a Bastille Day party every year at our house, with fireworks and friends everywhere. I think I get it from him.”
Mathisen moved to Steamboat Springs permanently in 2009. Taking a page from her parents’ love story, she met and fell in love with firefighter Matthew Mathisen. Their family was made complete with the arrival of their daughter, Jade, now 7.
“Jade has my mother’s curly, wavy hair,” said Mathisen. “And she’s very independent – something she and I both inherited from my mother.”
Knowing the family tree
In early 2018, Mathisen visited UCHealth Gloria Gossard Breast Care Center for a screening mammogram.
“I was asked for my family history, and it took me ages to fill out,” she recalled. “When it’s your story, you live with it and don’t think it’s that unusual. Doesn’t everyone have that much cancer in their family? It’s what we grew up with, so I didn’t think anything of it.”
Five things to know about your family’s health history
They say knowledge is power, and with regard to one’s health, it certainly can be.
“Knowing your family’s health history is really important,” said Frannie Johnson, breast nurse navigator at UCHealth Gloria Gossard Breast Care Center. “For example, you may know your grandma went away for a little bit because she was sick, but may not know why she was sick. It’s important to know these details as it can influence the care plan providers develop and how they approach different symptoms.”
Here are five things to know to help better understand your family’s health history.
- Types of cancer (s)
- Age at diagnosis
- Maternal or paternal side of the family
- Some ethnicities, such as those with Ashkenazi Jewish ancestry, are at greater risk for certain cancers.
- Results of any previous cancer-related genetic testing
“Knowing a patient’s health history can change care recommendations and treatment,” said Frannie Johnson, breast nurse navigator. “It’s important to know your family’s history, as in Alex’s case, with the prevalence of a number of cancers including uterine cancer, it put our radars up.”
Upon recommendation, Mathisen met with a genetic counselor at UCHealth Jan Bishop Cancer Center.
“Based on my family history and without even doing a test, she thought Lynch syndrome could be a factor,” said Mathisen. “One simple blood test. That’s all it took for a 47-gene panel to be completed that would test for all types of cancers.”
Mathisen was home alone on December 21 when the call came. She had tested positive for a pathogenic mutation of the MSH2 gene, one of four DNA mismatch repair (MMR) genes. Lynch syndrome increases the risk of developing a slew of cancers by age 70 – colon, endometrial/uterine, ovarian, stomach, hepatobiliary, urinary tract, small bowel, brain/central nervous system, sebaceous skin and pancreatic – all of which comes with higher risk compared to the general population. For example, the lifetime risk for developing colon cancer among individuals with an MSH2 mutation is 52-82% compared to the general population risk of 5%. Early onset of symptoms can occur in a person in their 40s and 50s.
“I burst into tears. Until you hear the words come out of someone else’s mouth about your risk of developing cancer, you can deny it,” said Mathisen. “I couldn’t any more. On one hand, devastation. On the other, maybe this is why Mum had died so young.”
Mathisen presented herself with two options – drown in sorrow or take control.
“I’d always been worried about uterine cancer. When you have someone close to you die of cancer, you’re convinced you’re going to get that type of cancer, too,” said Mathisen. “And I might have. Instead, I chose to take the power of knowledge into my own hands.”
On Jan. 17, Mathisen had a uterine ultrasound and a uterine biopsy to ensure cancer hadn’t started to develop; thankfully, it hadn’t. The next day, she had a colonoscopy and upper endoscopy at UCHealth Yampa Valley Medical Center with Dr. Mark McCaulley. On Jan. 24, she had an elective total hysterectomy with Dr. Diane Petersen, an obstetrician/gynecologist with UCHealth Women’s Care Clinic in Steamboat Springs.
“We had already decided we were a one child family, so Matthew and I didn’t have to have that difficult conversation,” said Mathisen. “I already had a relationship with Dr. Petersen as she had delivered Jade. The procedure went well, and my recovery was great.”
Mathisen will continue to have annual colonoscopies and every other year, she’ll have an upper endoscopy to check for any suspected cancer growths. She will also have an annual visit to the dermatologist, as well as annual bloodwork and urine screenings. It’s also important for people with Lynch syndrome to consult with a doctor on any changes in their body, such as lumps, pains or overall bodily function.
“My mother didn’t watch me graduate or get married or have a baby,” said Mathisen. “I know I have a higher risk of cancers, so I’m going to do everything I can to be alive for my daughter as long as possible,” she said.
Tending her own garden
That includes a lifestyle that features a mostly plant-based diet and yoga. Mathisen shares her love of yoga with others during retreats through Soul Spark Journeys, where attendees are invited to unplug, replenish and rejuvenate themselves. She also teaches yoga at Jade’s school.
“I get to choose how I live every aspect of my life,” she said. “Family is really important to me, as are my friends. Any type of diagnosis can put things in perspective. I need to be present in each moment every day because that’s what Jade will remember.”
Family members have since gone through genetic testing. Being identical twins, sister Thea tested positive, while their younger sister, Laura, was negative.
“It’s a hard conversation to have with those you love,” said Mathisen. “But I wanted them to feel empowered to have the opportunity to take control of their health if they chose to do so.”
Flowers for patients
Following weekend weddings, and with permission from the newlyweds, leftover bouquets and centerpieces cover Mathisen’s kitchen table on Sundays waiting for their next recipients.
“Jade helps me almost every time,” said Mathisen. “She gets a spark in her eye as we create new arrangements for the patients to enjoy.”
On Monday mornings, Mathisen delivers the arrangements to UCHealth Jan Bishop Cancer Center – one at the front desk, some for the nurses’ stations, some in the infusion bays, and all for patients to see and enjoy.
“Each day of your life and how you live it counts,” said Mathisen. “Right now, I’m a ‘pre-vivor’ – I’m not a survivor as I haven’t had cancer, but it’s very possible I will at some point in my life. I’m choosing to give balance to every aspect of my life as a mother, wife and business owner. I’m choosing positivity.”
Connection is key
Mathisen says connecting with others diagnosed with Lynch syndrome has been extremely helpful. “Whether it’s a new piece of research or something my doctor told me that I think others may benefit from, we’re there for each other,” she said. Mathisen recommends Lynch Syndrome International as resource for additional information as well as Lynch Syndrome Support Group/LSI for those diagnosed with Lynch syndrome.