Some people make New Year’s resolutions. My husband, Darrell, and I choose a word of the year instead. Right now, it’s “Story.” You see, we thought we were writing one story, but since Darrell was diagnosed with glioblastoma (GBM), that story has changed. At first, I mourned the loss of that story, but now I’ve realized that although our lives are different, we are still writing our story.
The week our story changed, we’d gone to our cabin in the mountains. Darrell had trouble speaking; we thought he was stressed from overwork. When his speech didn’t improve, I convinced him we should drive down the mountain to the emergency room. He wanted to go home first and check his email! I realized later that he wasn’t just being stubborn. His judgment was impaired.
At first, the doctors thought it was a stroke because shortly after arriving at the hospital, Darrell’s mouth developed a droop. But tests indicated a brain mass. I can still hear the neurologist’s words: “Common things are common.” He told us that the mass could be something less problematic, but most likely it was glioblastoma, the most prevalent and aggressive form of brain cancer. Only surgery could confirm the likely diagnosis.
That first night in the ICU, holding Darrell’s hand, I knew. “Common things are common.” Darrell had all the symptoms that many people with glioblastoma hold in common. I let that reality sink in.
That night, I felt that I carried the weight of the pending diagnosis. Darrell slept. None of our loved ones knew. In my mind, I erased our retirement years together. I erased us sitting side by side and applauding our son as he graduated from medical school. I erased watching Darrell place the doctoral hood on our other son’s shoulders at his Ph.D. commencement. I erased us spoiling grandchildren together. I had nothing with which to replace these images. I had no new story, only blackness. That night was the end of our first life, the life we call “Life 1.0.”
Darrell’s surgery went well. The oncologist told us to investigate an FDA-approved treatment for GBM called Optune.
Although Darrell’s speech was immediately improved by surgery, the screening revealed new holes in his ability to produce language. When the therapist asked Darrell to name as many animals as he could, he replied, “Dragon!” Done. When asked to draw the face of a clock showing 2:10, Darrell said, “I got nothing!” We laughed. Life 2.0 is about choice: Laugh or cry. In Life 2.0, we chose laughter.
For the next several months, we threw ourselves into daily radiation treatment and chemotherapy. Because our oncologist introduced Optune® even before surgery, Darrell had plenty of time to consider it as part of his treatment. Although we were a team, I knew the decision had to be Darrell’s. Darrell is a private person who wears neutral colors and doesn’t like attention. Choosing a highly visible treatment like Optune was not an easy decision. At the time, studies suggested that Optune might buy Darrell enough time to attend our son’s medical school graduation. That became the deciding factor for Darrell. As soon as he was able, Darrell began Optune with the chemotherapy temozolomide, also known as TMZ.
Wearing something on his head that drew attention to him made Darrell uncomfortable at first, but he got over it. He didn’t mind shaving his head at all. I took on the role of caregiver—having something I could actively do to help Darrell makes me feel better. I learned how to shave his head and how to affix the arrays. I’ve become the tech support troubleshooter, too, with the help of our Device Support Specialist from Novocure. I change the arrays and manage supplies with the nCompass™ support program. Oh, and I always carry extra batteries. It’s all about controlling the things you can, right?!
Darrell has experienced some side effects due to Optune. He sometimes gets skin irritations on his scalp under the arrays. I’ve become skillful at cutting the arrays and shifting them just a bit to allow the sore spots to heal.
Even though I’m technically his caregiver, Darrell takes care of me, too, daily. He awakens me with a fresh cup of coffee in the morning. When I work, he packs my lunch and includes a note that says, as it has for 30 years, "I love you."
He’s also the most compliant patient you can imagine. Forget the suggested minimal 75 percent compliance (about 18 hours a day). He’s 98 percent. He takes his Optune off only when he showers. Optune has just become a part of our lives. We love to hike and go out to dinner, and we’ve found that the Optune backpack is lightweight and goes anywhere. We live in Southern California, and if it gets hot outside, the gel affixing the arrays can start to come off and set off the alarm. If this happens, we have to stop and get in the shade. Once we’re back home, I may have to change the arrays. In the summer, we tend to take our walks early in the morning or walk indoors at the mall.
My husband is my hero. He has approached every aspect of his disease with courage and with humor. GBM and the life that follows it—Life 2.0—have taught us so much. Our story—the real story—is the one we write with the choices we make. Our story is not what happens to us in life, but the meaning we choose to make of it.
We continue to find the happy parts of every day. As Darrell’s primary caregiver, I have to take care of my own health and feed my soul. It’s important to do those things that are just for me. In Life 2.0, Darrell and I live life greedily. We see the world with new eyes, eyes that sense the incredible, intense beauty of the ocean and the trees at the park. This Christmas, we had two Christmas trees, two holiday card designs, and two Christmas dates. Now we never kiss just once. We kiss three times. We don’t know what will happen tomorrow, but we know it will not be the end of the story. It will be what we make of it. We will keep writing our story. I hope you will, too.