Local Relay’s ‘Caregiver of the Year’ honors wife’s memory

By Katie Mauer
For The Patriot

Pictured, from left, are Raina, Dan, Carlene, Aidan and Neva Johnston. Dan Johnston is the 2017 Waconia Relay for Life Honorary Caregiver. (Submitted photo)

What used to be ‘we’ is now ‘he.’

Dan Johnston is the ‘he’ who supports the Johnston family. He provides counsel to his teenage daughters and 10-year old son. He thoughtfully plans the family vacations. He is the one who honors his wife Carlene’s memory by being the best version of ‘he’ because the ‘we’ is no longer.

Dan Johnston will be the 2017 Honorary Caregiver at Relay for Life of Waconia.

Dan and Carlene began dating in September of 2000. Two months later, they were planning their wedding. You see, they were always meant to be ‘we.’ Together they have Raina (15), Neva (14) and Aidan (10) – three children who embody the best of both Dan and Carlene.

In early 2012, Carlene was diagnosed with breast cancer. Initially, doctors didn’t assign it a stage – it was barely in her lymph nodes, they had caught it early, and her prognosis was good. After a double mastectomy and genetic testing, however, the bad news was delivered: Carlene had a BRCA2 mutation, and suddenly her prognosis was not so good. Within a year of her initial diagnosis her cancer had returned, much more aggressively than the first time. And so it began: Traveling and searching and experimenting with all sorts of treatments that would stop the cancer.

In early November 2016, almost five years after her diagnosis, Carlene and Dan learned that she had advanced ascites –indicating that her liver was in the final stages of failure. There was nothing left to do; Carlene had only weeks to live. On November 17, 2016, Carlene went to heaven.

That day, Dan wrote these words to share with friends and family: “What is fair is not always what is right and good. We all know we were born and that we will die. If we believe in the providence of God, and we are walking rightly, who is to question when it is one’s time to move to a new life. Don’t feel sorry for us or feel that some disaster has occurred. We continue to mourn quietly and slowly. No fear. No anger.”
Being a caregiver to his wife was, to his surprise, easy.
“When you’re helping someone you love, it is not a burden,” Dan said.

Dan savors the memories of the two of them together, living on a shoestring budget, because of the cancer.

He learned that the most important thing to be was, simply, present. Present to listen, present to love and present to acknowledge Carlene’s emotions. Who was he to tell her not to be afraid when she said she was scared? Who was he to tell her that things would be ok when he knew that they would not?

Instead, Dan listened to Carlene, he cried with her as she cried, and together they planned for his future without her by his side.

Close friends provided tremendous support to the Johnston family. Support also came from several local pastors and from organizations that support families of cancer patients. Little Pink Houses of Hope hosted the entire family, including Carlene, at Lake Tahoe where they could spend time with other families impacted by breast cancer. Dan still stays in touch with some of them, as they all move forward in their various stages of the cancer journey.

Dan and the kids have taken some cathartic trips in the months since Carlene passed away – a trip to San Francisco to visit many of Carlene’s favorite places, a trip to Disneyworld because Carlene wanted Aidan to see Harry Potter World, and a trip to Lutsen where Dan and Carlene honeymooned years ago. It was this last trip where Dan felt like he was able to turn a corner, to say goodbye to his wife, to face the world as a ‘he’ instead of a ‘we.’

Dan’s youngest daughter, Neva, put together a video of her mom’s best moments, set to the song ‘When I’m Gone.’ In the song, Joey Feeks sings, “You’ll wonder why the earth still moves, you’ll wonder how you’ll carry on, but you’ll be ok on that first day when I am gone.”

And they are OK. Dan honors Carlene in all that he does. He loves and protects his kids, he keeps the house running, and he continues to heal and move forward. Life in the Johnston household continues; it’s just minus one now. Dan says, “I know I can do all of this on my own, but having her beside me, doing it together, made it all so much more vibrant and fun. We all move on, but it’s hard, because I don’t want people to forget her.”

As the honorary caregiver, Dan will share his story at Relay for Life of Waconia on Friday, Aug. 18, at the Carver County Fairgrounds. The event, now in its eighth year, provides an opportunity for the community to come together to remember loved ones lost, honor survivors of all cancers, and raise money to help the American Cancer Society make a global impact on cancer. Gates open at 4 p.m.