{"id":26925,"date":"2019-10-08T15:16:15","date_gmt":"2019-10-08T21:16:15","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=26925"},"modified":"2023-11-20T15:24:33","modified_gmt":"2023-11-20T22:24:33","slug":"living-with-lynch-syndrome","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/living-with-lynch-syndrome\/","title":{"rendered":"Choosing positivity as a “pre-vivor”"},"content":{"rendered":"
<\/div>
\"This
Matthew, Jade and Alex Mathisen. Photo by UCHealth.<\/figcaption><\/figure>\n

Alex Mathisen had lilies at her wedding in August 2012. Bright orange ones.<\/p>\n

\u201cMy dad often bought my mum lilies, which is why I think I love them so much,\u201d said Mathisen. \u201cGrowing 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.\u201d<\/p>\n

There\u2019s something about flowers \u2013 their beauty and color and simplicity.<\/p>\n

\u201cWe would often take fresh-cut flowers to friends when going for a visit. It\u2019s amazing how flowers can make you smile, usually because they invoke good memories,\u201d said Mathisen.<\/p>\n

Good memories, like weddings. As the owner of Soul Spark Events<\/a>, Mathisen works with engaged couples to bring their wedding day vision to life.<\/p>\n

\u201cFlowers help create the setting. They\u2019re so dynamic and diverse,\u201d she said. \u201cWildflowers say casual and more free, whereas roses are more traditional and sunflowers add color and an element of fun.\u201d<\/p>\n

Mathisen works closely with local florists to ensure various components of the wedding \u2013 the alter, centerpieces, even the cake \u2013 connect with floral elements. But after the \u201cI dos\u201d are said, the cake is cut and the dance floor clears, what happens to the flowers?<\/p>\n

\"Flowers
From wedding flowers to patient flowers. Photo courtesy of Alex Mathisen.<\/figcaption><\/figure>\n

\u201cMost couples don\u2019t 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,\u201d said Mathisen. \u201cIt\u2019s almost an automatic, \u2018Yes, we\u2019d love to do that.\u2019 And I love to do it, too.\u201d<\/p>\n

A petal falls too soon<\/strong><\/h3>\n

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.<\/p>\n

\"Elaine
Elaine Pallut, 28, holds baby Alex in this photo from 1978. Photo courtesy of Alex Mathisen.<\/figcaption><\/figure>\n

\u201cMy mother was a lover of languages and all things cultural \u2013 she loved classical music, opera, art galleries, ballet. She and my father shared all these interests,\u201d said Mathisen. \u201cI remember afternoons spent baking and doing arts and crafts together. And we traveled as a family often.\u201d<\/p>\n

But in 1988 at the age of 37, and with so much to still teach and show her girls about the world, Mathisen\u2019s mother passed away from uterine cancer.<\/p>\n

\u201cWhen you\u2019re 11 and lose your mum, it\u2019s incredibly difficult,\u201d said Mathisen.<\/p>\n

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.<\/p>\n

\u201cMy mum was really sick for a couple of years,\u201d said Mathisen. \u201cShe went in every three weeks for chemotherapy, and lost her hair. The cancer metastasized and it was terrible. There were times when she couldn\u2019t get out of bed. Somehow we were able to all go on holiday together in August (of 1988), and then she passed in September.\u201d<\/p>\n

Blossoming into the world<\/strong><\/h3>\n
\"Matthew,
Matthew, Alex and Jade Mathisen at the top of Hahn’s Peak. Photo courtesy of Alex Mathisen.<\/figcaption><\/figure>\n

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.<\/p>\n

\u201cI\u2019m a planner, definitely very logistical,\u201d she said. \u201cMy father used to love planning and hosting parties. We had a Bastille Day<\/a> party every year at our house, with fireworks and friends everywhere. I think I get it from him.\u201d<\/p>\n

Mathisen moved to Steamboat Springs permanently in 2009. Taking a page from her parents\u2019 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.<\/p>\n

\u201cJade has my mother\u2019s curly, wavy hair,\u201d said Mathisen. \u201cAnd she\u2019s very independent \u2013 something she and I both inherited from my mother.\u201d<\/p>\n

Knowing the family tree<\/strong><\/h3>\n

In early 2018, Mathisen visited UCHealth Gloria Gossard Breast Care Center<\/a> for a screening mammogram.<\/p>\n

\u201cI was asked for my family history, and it took me ages to fill out,\u201d she recalled. \u201cWhen it\u2019s your story, you live with it and don\u2019t think it\u2019s that unusual. Doesn\u2019t everyone have that much cancer in their family? It\u2019s what we grew up with, so I didn\u2019t think anything of it.\u201d<\/p>\n

\n

Five things to know about your family\u2019s health history<\/strong><\/h3>\n

They say knowledge is power, and with regard to one\u2019s health, it certainly can be.<\/p>\n

\u201cKnowing your family\u2019s health history is really important,\u201d said Frannie Johnson, breast nurse navigator at UCHealth Gloria Gossard Breast Care Center. \u201cFor 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\u2019s important to know these details as it can influence the care plan providers develop and how they approach different symptoms.\u201d<\/p>\n

Here are five things to know to help better understand your family\u2019s health history.<\/p>\n

    \n
  1. Types of cancer (s)<\/li>\n
  2. Age at diagnosis<\/li>\n
  3. Lineage\n
      \n
    1. Maternal or paternal side of the family<\/li>\n<\/ol>\n<\/li>\n
    2. Ethnicity\n
        \n
      1. Some ethnicities, such as those with Ashkenazi Jewish ancestry, are at greater risk for certain cancers.<\/li>\n<\/ol>\n<\/li>\n
      2. Results of any previous cancer-related genetic testing<\/div><\/li>\n<\/ol>\n

        \u201cKnowing a patient\u2019s health history can change care recommendations and treatment,\u201d said Frannie Johnson, breast nurse navigator. \u201cIt\u2019s important to know your family\u2019s history, as in Alex\u2019s case, with the prevalence of a number of cancers including uterine cancer, it put our radars up.\u201d<\/p>\n

        Upon recommendation, Mathisen met with a genetic counselor at UCHealth Jan Bishop Cancer Center<\/a>.<\/p>\n

        \u201cBased on my family history and without even doing a test, she thought Lynch syndrome<\/a> could be a factor,\u201d said Mathisen. \u201cOne simple blood test. That\u2019s all it took for a 47-gene panel to be completed that would test for all types of cancers.\u201d<\/p>\n

        Mathisen was home alone on December 21 when the call came. She had tested positive for a pathogenic mutation of the MSH2 gene<\/a>, one of four DNA mismatch repair (MMR) genes<\/a>. Lynch syndrome<\/a> increases the risk of developing a slew of cancers by age 70 \u2013 colon, endometrial\/uterine, ovarian, stomach, hepatobiliary, urinary tract, small bowel, brain\/central nervous system, sebaceous skin and pancreatic \u2013 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.<\/p>\n

        \u201cI burst into tears. Until you hear the words come out of someone else\u2019s mouth about your risk of developing cancer, you can deny it,\u201d said Mathisen. \u201cI couldn\u2019t any more. On one hand, devastation. On the other, maybe this is why Mum had died so young.\u201d<\/p>\n

        Two options<\/strong><\/h3>\n

        Mathisen presented herself with two options \u2013 drown in sorrow or take control.<\/p>\n

        \u201cI\u2019d always been worried about uterine cancer. When you have someone close to you die of cancer, you\u2019re convinced you\u2019re going to get that type of cancer, too,\u201d said Mathisen. \u201cAnd I might have. Instead, I chose to take the power of knowledge into my own hands.\u201d<\/p>\n

        On Jan. 17, Mathisen had a uterine ultrasound and a uterine biopsy to ensure cancer hadn\u2019t started to develop; thankfully, it hadn\u2019t. The next day, she had a colonoscopy and upper endoscopy at UCHealth Yampa Valley Medical Center<\/a> with Dr. Mark McCaulley. On Jan. 24, she had an elective total hysterectomy with Dr. Diane Petersen<\/a>, an obstetrician\/gynecologist with UCHealth Women\u2019s Care Clinic in Steamboat Springs<\/a>.<\/p>\n

        \u201cWe had already decided we were a one child family, so Matthew and I didn\u2019t have to have that difficult conversation,\u201d said Mathisen. \u201cI already had a relationship with Dr. Petersen as she had delivered Jade. The procedure went well, and my recovery was great.\u201d<\/p>\n

        Mathisen will continue to have annual colonoscopies and every other year, she\u2019ll 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\u2019s 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.<\/p>\n

        \u201cMy mother didn\u2019t watch me graduate or get married or have a baby,\u201d said Mathisen. \u201cI know I have a higher risk of cancers, so I\u2019m going to do everything I can to be alive for my daughter as long as possible,\u201d she said.<\/p>\n

        Tending her own garden<\/strong><\/h3>\n
        \"Alex
        Mathisen practices yoga in Xinalani, Mexico. Photo courtesy of Alex Mathisen.<\/figcaption><\/figure>\n

        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<\/a>, where attendees are invited to unplug, replenish and rejuvenate themselves. She also teaches yoga at Jade\u2019s school.<\/p>\n

        \u201cI get to choose how I live every aspect of my life,\u201d she said. \u201cFamily 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\u2019s what Jade will remember.\u201d<\/p>\n

        Family members have since gone through genetic testing. Being identical twins, sister Thea tested positive, while their younger sister, Laura, was negative.<\/p>\n

        \u201cIt\u2019s a hard conversation to have with those you love,\u201d said Mathisen. \u201cBut I wanted them to feel empowered to have the opportunity to take control of their health if they chose to do so.\u201d<\/p>\n

        \"Sisters
        L-R: Sisters Alex Mathisen, Thea Pallut and Laura Gallagher during a family reunion in Greece in 2017. Photo courtesy of Alex Mathisen.<\/figcaption><\/figure>\n

        Flowers for patients<\/strong><\/h3>\n

        Following weekend weddings, and with permission from the newlyweds, leftover bouquets and centerpieces cover Mathisen\u2019s kitchen table on Sundays waiting for their next recipients.<\/p>\n

        \u201cJade helps me almost every time,\u201d said Mathisen. \u201cShe gets a spark in her eye as we create new arrangements for the patients to enjoy.\u201d<\/p>\n

        \"Alex
        In what has become a Sunday tradition, Alex and Jade Mathisen arrange flowers into vases at their kitchen table. Photo by UCHealth.<\/figcaption><\/figure>\n

        On Monday mornings, Mathisen delivers the arrangements to UCHealth Jan Bishop Cancer Center \u2013 one at the front desk, some for the nurses\u2019 stations, some in the infusion bays, and all for patients to see and enjoy.<\/p>\n

        \u201cEach day of your life and how you live it counts,\u201d said Mathisen. \u201cRight now, I\u2019m a \u2018pre-vivor\u2019 \u2013 I\u2019m not a survivor as I haven\u2019t had cancer, but it\u2019s very possible I will at some point in my life. I\u2019m choosing to give balance to every aspect of my life as a mother, wife and business owner. I\u2019m choosing positivity.\u201d<\/p>\n

        \"Alex
        Following weekend weddings, Alex Mathisen delivers fresh flowers to patients at UCHealth Jan Bishop Cancer Center on Monday mornings. Photo by UCHealth.<\/figcaption><\/figure>\n
        \n

        Connection is key<\/strong><\/p>\n

        Mathisen says connecting with others diagnosed with Lynch syndrome has been extremely helpful. \u201cWhether it\u2019s a new piece of research or something my doctor told me that I think others may benefit from, we\u2019re there for each other,\u201d she said. Mathisen recommends Lynch Syndrome International as resource for additional information as well as Lynch Syndrome Support Group\/LSI<\/a> for those diagnosed with Lynch syndrome.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

        Alex Mathisen had lilies at her wedding in August 2012. Bright orange ones. \u201cMy dad often bought my mum lilies, which is why I think I love them so much,\u201d said Mathisen. \u201cGrowing up in London, he would pick them up from a train station stand on Fridays. She loved freesias, too. And her mum […]<\/p>\n","protected":false},"author":2146,"featured_media":26940,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[7],"tags":[28,2092,47,1046,2518],"class_list":["post-26925","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories","tag-cancer-care-oncology","tag-colon-cancer","tag-genetic-testing-and-counseling","tag-health-screening","tag-uchealth-yampa-valley-medical-center"],"acf":[],"yoast_head":"\nChoosing positivity as a "pre-vivor" - 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