Lynn's diagnosis happened fast. It started with a headache. It persisted for a month and when the doctors couldn’t figure out what was wrong, she was sent for an MRI. The radiologist said it looked like a brain tumor. We were sent to a big city hospital for a diagnosis. Before we got there, Lynn had a seizure. I knew then it was serious. It was my turn to step in and Lynn’s turn to need help.
When Lynn’s biopsy showed GBM, her neurosurgeon gave us one important piece of advice: Stay off of the Internet! Frankly, we had no time for research. We only had time to get a bigger boat. We just had to focus and get our act together. We didn’t have time to feel sorry for ourselves. We had doctor’s visits and instructions for chemo and radiation.
We didn’t take the time to get too down. We just kept moving forward. As long as we had a plan to follow, we could keep positive and focused on what we needed to do. It was my job to make sure that everyone was on board with our plan.
Just as Lynn had taken care of me so many times before, I was now taking care of her. I was making decisions 24/7 and doing whatever I could to allow Lynn to focus on getting the treatment she needed.
As our plan continued to evolve and change with her needs, Lynn’s doctor told us about Optune®. We learned how Optune worked and what it would entail. After that conversation, we knew Optune was the right decision for Lynn.
Time for change
Lynn's long red hair had to go. No time to mourn. We threw a “Make Lynn Bald Party” and invited her rabbi and her closest friends for wine and cheese. We had friends and family members calling in on video chat. It was hard for some to accept that Lynn would not be the same. But we assured them that we had a plan.
Our nCompass™ Device Support Specialist (DSS) came to our house with all the supplies and set everything up on the dining room table. She demonstrated how to place the arrays as she explained the process. I was super focused on what she was doing. I knew it would be my responsibility to place and change the arrays going forward.
I took a million notes. It seemed so overwhelming at first, but now it doesn’t. Once we got started, I wasn’t afraid or nervous. It was one of those things I had to do. Our DSS did a phenomenal job instructing us and gave me lots of hints on how to place the arrays correctly according to our placement map.
Sometimes I get frustrated because I want it to be perfect every time. Experience really helps. We kept a sense of humor about the whole thing, and we remained positive about Lynn’s treatment.
Other than help with array changes, Lynn doesn’t need much assistance. She manages carrying supplies, changing batteries, being efficient, and normalizing all parts of using Optune. I help sometimes, but it’s seldom necessary.
The bigger boat
When Lynn was diagnosed, we knew we needed a bigger boat, a larger community to help us get through this difficult diagnosis. This includes more empathetic friends, better doctors, and trusted specialists. All of Lynn’s doctors—her thyroid doctor, her allergy doctor, her GYN—are now connected and all talking to each other. Our team is twice as big as it was—and we trust every single member.
I am not just Lynn’s husband or caregiver; I am part of her treatment team. I go wherever she goes.
As an integral part of the treatment team, I have to take care of myself as well. That means staying healthy—it’s not my turn to be sick! I maintain a healthy diet and work out several times a week. We have the equipment we need right in our house so we can both stay in shape.
And I have to stay emotionally healthy, too. I’m a ridiculously positive person, so that helps. I believe that if you’re positive about all parts of your life, you can get through anything. I keep on track with my friends and activities. I belong to several networking groups. We help each other out in a variety of ways.
Our new normal
Over two years later, Lynn is still that fiery redhead—even without the red hair—and strong as a bull. She’s very independent. Her doctor gave her the okay to drive and exercise, so she drives to her physical therapy sessions. Every day, we walk 4,000 steps together.
We've adapted some of our activities. For example, we stopped camping out in a tent. Instead, we go out in an RV, which takes away any worry that we won't have access to power. We also do less water sports because you should not get the arrays wet, and we spend less time outdoors when it is really hot out. We just figure out each situation as we go.
We are satisfied living the life that our life has become. Accepting the way things are is the way for us to be happy. It’s not enough for Lynn to feel that way. I have to feel that way, too. This is our new normal and I can be happy with that.