Today’s blog comes from the Vice President of Metavivor and Director of Finances. Patrick Quinn is the husband of Lisa Cooper Quinn, a stage IV metastatic patient with the BRACA mutation. Together with Kelli Davis they head up the largest national fund raiser for metastatic breast cancer, the North West Arkansas Metsquerade.
Barbara Bigelow, Editor
A story of a spouse, father, caregiver, and advocate by Patrick Quinn
In 2015, my wife, Lisa, and I had just experienced an amazing summer of vacations with our two children, Cooper age 6 and Karis age 3. We traveled to Clearwater Beach in Florida and stayed in a condo overlooking the pristine waters of the Gulf of Mexico. We followed that trip with one to Minneapolis, MN where we were able to see my oldest nephew, Brandon, get married. Other than a tumble down a flight of stairs and a trip to an emergency room for Karis, the trip was spectacular. Lisa and I ended the summer vacations with a trip to an all- inclusive resort in Cancun, where we enjoyed lazy rivers and queen-sized outdoor beds to lounge around on all day. It was amazing!
Not long after we returned from Mexico, Lisa was diagnosed with breast cancer. I cried with her and our friend Whitney as the doctor told her she had breast cancer. I cried when the results came back from the genetic testing that said she is BRCA2 positive. Since Lisa is BRCA2 positive, it means our children have a 50 percent chance of also carrying the gene mutation. The mutation increases the chances of breast, ovarian, prostate, pancreatic, and skin cancers in an individual’s lifetime. I cried after we found out her breast cancer had spread to her bones and she was now a stage 4 metastatic patient. Nothing was fun any longer. It was difficult to get through the days.
Lisa cried more than I did though. Understandably so, she was a total mess. I feared for her sanity as she barely kept it together. When I am around Lisa, I won’t cry; otherwise she will lose it. I found that out after we received the results for the genetic testing. She saw me crying in the shower and started yelling, “Patrick, Patrick.” She was desperate for me to keep my sanity so she could keep hers. She needed my help in her hour of greatest need and I did what I could. As much as I wanted to, I couldn’t make her diagnosis go away, but I could help her face it and learn to live with our new reality.
Very few of the doctors talked about how bad stage 4 metastatic breast cancer was when she got diagnosed. They didn’t talk about how the median survival after a diagnosis is 36 months. One doctor sluffed the question of what her prognosis would be and simply said, “you won’t live to be a hundred.” She was only 36 at the time and she just wanted to know if she would live to see our children grow up.
Right before one of her many surgeries, Lisa’s fellow classmate from Springdale High School, an anesthesiologist, told her there isn’t a lot of research into treatments for stage 4 breast cancer patients. Looking back on what she said was a pivotal moment for me. The fact that a doctor had told us there wasn’t a lot of research encouraged me to start looking into where research dollars were going. I found out that very little funding was going to stage 4 metastatic cancers in general and specifically, less than five percent for the disease that was killing my beautiful wife.
At the same time as Lisa was diagnosed, there was a rising social media movement by women and men with stage 4 breast cancer who were screaming to be heard. Stage IV patients had found a megaphone with social media to spread the injustices of how research dollars were being spent. Lisa would spend hours on Facebook, initially reading what others were saying and eventually educating others on the lack of research and what it means to be a metastatic patient.
Several months after her diagnosis, Lisa mentioned to me that there was a person on Facebook who lived near us and had talked about doing a fundraiser for research. I encouraged Lisa to reach out and we eventually set a dinner date with Kelli Parker (Davis now) at Theos, an American themed restaurant in Rogers. It was nice for us to meet someone else who understood what we were going through. We discussed stage IV metastatic breast cancer, an organization called Metavivor, and her idea of a fundraiser gala called a “Metsquerade.” Both Lisa and I loved the idea and we agreed we could help implement it to become a reality. We walked away from our dinner date with a different focus from our original one. Our new focus became raising money for research and focusing our energies on advocating instead of the diagnosis.
We decided that Metavivor would be the recipient of our gala because they were led by patients who understood the importance of research and 100% of general donations and fundraising went to research for the already metastasized patient. We knew that there were some organizations who put money toward stage 4 research, but only a portion was going toward the goal of “making metastatic breast cancer a chronic manageable disease with a good quality of life instead of a terminal one” (Metavivor.org). We didn’t know the ins and outs of Metavivor, but we knew we had to do whatever was necessary to help them succeed. The general public wanted to see us succeed as well, and the support we received was astounding.
Within three months of Lisa’s diagnosis, we decided to put on our first Metsquerade and Lisa’s mindset changed from one of complete despair to one of making a difference for both herself and others with the same diagnosis. Her focus became speaking to groups and individuals about the lack of research, her diagnosis, and what we could do to change the dialogue of a stage 4 diagnosis. We talked with whoever would listen and found ourselves in situations we would never have imagined prior to her diagnosis. We went to a political fundraiser with the intention of speaking directly to our governor and other representatives. Even though our ideologies differed, cancer doesn’t discriminate, and everyone was open to our story. Since her diagnosis, she has spoken in front of schools, to large and small businesses, and to any individual who will listen. She was asked to be the keynote speaker at Springdale High School’s graduation commencement in 2018, only the second woman in the state of Arkansas to be given that honor.
While Lisa and Kelli were talking to everyone they knew, I reached out to the network of people I had done business with since 2006 in my real estate career and asked for their support. I started with my office, Coldwell Banker Harris McHaney & Faucette, and Pat Harris immediately signed up as a gold sponsor and has supported us since. People could see the passion we had about the importance of fundraising for research. I remember going into a venue to reserve a room for the event the first year. I signed a contract for $20,000 with my credit card on file. Jordan, who was the event manager, asked me if Metavivor would be paying for the event. I told him we would only get reimbursed if we made enough money to keep our fundraising expenses low, and that was the risk we were willing to take. He told me later that he never had an event put on by someone who was willing to risk their own money to make it succeed. We ended up raising over $130,000 the first year, so we didn’t have to come “out of pocket” for the event costs, but we would have if it hadn’t succeeded.
During the same time, we were putting together our first event, another individual had been asked to come aboard as the President of Metavivor, Beth Fairchild. She had been diagnosed with stage 4 metastatic breast cancer to every bone in her body. She had used Metavivor’s slogan, “Don’t Ignore Stage IV” in a post and it had trended on social media. In 2015, the board led by CJ Corneliussen-James, one of four original founders of Metavivor, thought it would be beneficial to bring someone on who had been recently diagnosed, was young, and who could help lead the social media movement. I saw Beth, Lisa, Kelli, and many other advocates fight to be heard on social media. If you followed their social media posts, they were constantly educating others, getting into “Facebook Fights,” and advocating for what needed to be done. Sometimes the posts got ugly, dirty, and mean. People would tell stage 4 patients to die. The behavior of some of those who are not affected by the disease was disgusting.
Many advocates have died fighting for their right to be heard and to change the dialogue of what it means to be a metastatic breast cancer patient. They were selfless and fought for something bigger than themselves, though. They were fighting for their children, their friends, and family members in the future who may get diagnosed with a stage 4 cancer. They were fighting to make a difference in their lives, to be remembered when their time was up, and to be loved by their family, friends, and anyone who would listen.
The past five years have been somewhat of a blur as a caregiver/husband, an advocate, and a father. We have continued the annual Metsquerade, developed an online fundraiser called the Metaribbon Challenge, and started several other local fundraisers including Runway IV Research, A Grand Night of Giving, and Karis’s Lemonade Stand. Karis’s Lemonade Stand is special because it was picked up by ABC’s “World News Tonight” and featured our daughter Karis, at six years old, selling lemonade for research. The Metsquerade team would spend hours figuring out what would be the best way to raise as much money as possible for research. Since 2015, the Northwest Arkansas Metsquerade team has netted (after event costs) over $1,200,000 for research from all the fundraisers we started. More importantly, the money from all of the fundraisers has funded over eight grants researching treatment for the already metastasized patient. The organizing team initially started as Lisa Quinn, Kelli Davis, and myself, but we have since added an amazing volunteer organizer, Krystina Pepper, who has gone above and beyond to help fund research. We also went from having no committee to one with twelve, dedicated individuals willing to help in whatever way they can to raise money and awareness for research.
In 2017, I was nominated to the board of Metavivor where I still serve as the Second Vice President and Director of Fundraising. I accepted the nomination and told them, “I will do whatever is necessary to help.” During our board meetings, I have worked alongside many amazing advocates. Unfortunately, several of my fellow board members have passed away. Pam King was the vice-president of Metavivor when I first joined the board. I remember driving the Metavivor RV, a mobile vehicle sponsored by one of our pharmaceutical supporters for our Sea to Sea Campaign, to meet up with her in Santa Fe, New Mexico. She helped coordinate a fundraiser with the International Rally Car Association to be part of their US race and drive across the western part of the United States in an antique car and the Metavivor RV would follow along the route. Pam had a stroke along the Texas route and wasn’t doing well when I saw her. She could barely speak and was in a wheelchair. Although, she went to the hospital, she insisted on finishing the rally and raising money for Metavivor. Pam was incredibly articulate, and she was also Metavivor’s correspondent with the National Institute of Health and had been instrumental in starting the Stage IV Stampede. I remember bending down to give her a hug and she looked me in the eyes and told me as best she could to keep on advocating no matter what. She passed away several days later. I will never forget her words of encouragement to push forward.
In fact, every patient and advocate I come in contact with has impacted me in some way. Veronica Velazquez was a young mother with a three-year-old child. She participated in our Metaribbon Challenge the first year we started it and raised quite a bit of money for Metavivor. At that years Metsquerade, we had a pair of DIFF sunglasses. I had no clue what DIFF sunglasses were, as I’m not very fashionable, but apparently a lot of people like them. We would always post our silent auction items and Veronica commented on the post that she wished she had a pair. Someone else won them that year, so she didn’t get them. The next year I reached out to DIFF and asked for a donation for all the Metaribbon Challengers who raised over a certain amount. My goal was to get her those DIFF sunglasses. DIFF sponsored the Metaribbon Challenge in 2019 and we received about 30 pair of sunglasses, but Veronica passed away before we could send her a pair. It broke my heart that a young mother was taken way too soon.
As a father with a spouse who has metastatic breast cancer, I try to never neglect the children. Cooper was six and Karis was three when Lisa was diagnosed. I remember when Karis was little watching “Frozen” one of the many times we would watch it together. She would dance along to the movie and in her toddler voice sing, “Here I stamp.” Cooper and I would look at each other, laugh, and I’d just wink at him to let him know it was ok that she said sang the words incorrectly. I still chuckle about this day and am happy I got to spend the time with her and Cooper making memories. If work allows me, I try and pick the children up after school and play with them as much as possible, even to this day.
One day Karis was sitting on my lap. I think she was about four or maybe five. She looked at me and said, “Daddy, I hope I never have cancer like mommy.” I didn’t really know what to say, so I responded, “I hope so, too.” My heart aches to think what would happen if either one of our children have the gene mutation or get cancer. Whenever I feel worn out and down, I remember that I can make a difference by doing what I’m doing now so I can help them in the future should they get this terrible disease. We can’t get the kids tested for the BRCA2 gene mutation until they are 18, and we don’t discuss the gene mutation with them, though they hear us talking about breast cancer.
As a caregiver I am there to help Lisa live the best life she can. Even though she found her voice as an advocate and co-chair to the largest national fundraiser for metastatic breast cancer, she still has times of fear, frustration, and panic. I knew when I married her that she was an emotional person, and that has not changed. As a caregiver, you become hardened to the inconsistencies of what life will throw at you. You become hardened seeing the person you love break down crying because they won’t get to see their children grow up. You become hardened knowing you won’t get to sit on the porch drinking iced tea and watching grandchildren play. You learn to enjoy the small things with the person you love. In the end, cancer steals your long-term dreams with someone. But it doesn’t get to steal the love you feel and the memories you make today.