Optune® Ambassador Program - Patient Story - Ashley M.J.

Optune® Ambassador Program - Patient Story - Ashley M.J.

September 27, 2019

Written by Optune® Ambassador Ashley M.J.

Hello everyone, my name is Ashley. If I had to describe myself in one word, it would be “grateful”. I love my faith. I love my family. I love my life. I intend to do everything possibly to keep it that way. I’d like to take this opportunity to thank Novocure for making it possible for me to share my story with you today.

Though I live in Texas now, I was raised in a traditional Southern home in L.A.–that’s lower Alabama, as the locals call it. My parents chose for Mom to be at home full-time raising my two sisters and me while Dad ran his shrimp boats. We were not a wealthy family, but my sisters and I never knew–our parents and grandparents doted on us so much!

I’ve always been a very active person. Heavier subjects bored me in school–I was one of the kids in drama club and band! I was and have continued to be involved in my church and Rotary club. Any time I had the opportunity to be a part of a community or team, I would take it.

Speaking of teams, I am a huge football fan. My favorite college team is the Crimson Tide–Roll Tide Roll! If it’s Alabama or the Dallas Cowboys playing, don’t you dare get between me and the TV! Much of the time, I don’t pay a lot of attention to what the referees are saying, but I enjoy it. I don’t have to know the rules of football to have fun. I just enjoy it. I’ve learned that with enough determination, you can choose to enjoy just about anything.

After high school, I raised four perfectly imperfect children–primarily as a single parent–and that was challenging. But I do my best to face difficulties with grace and determination. Far from perfect myself, I know how to take a difficult and painful situation and change it for the better. In the classic book Pollyanna, it’s called the “Glad Game”. I made sure my kids knew how to play it, too. It’s hard to believe they’re all grown up now.

Just a few winters ago, I was at a stoplight in my Chevy pickup and another driver ran a red light and hit me. My dad had given me that truck years before, and I’d named it Precious–I name things sometimes. In that accident, Precious saved my life, but I sustained a concussion from the impact.

The initial MRI/DTI indicated only that injury and nothing else, but a later MRI showed a tumor. That was a tough conversation; my physician assistant and I both cried while she told me. We sat knee to knee in a dimly lit exam room. She said, “Ashley, I’ve never had to say this to a patient before. But there was a radiologist watching your MRI. There’s something there. It could be cancer.”

After that, I didn’t really have enough time to process everything. I was immediately placed in a cocoon of safety at the hospital. After imaging, I was admitted. I felt insulated and protected. I underwent surgery, truly never fearing what the biopsy might reveal or what the outcome might be. The tough part came when I had to call my kids and my parents to tell them, and that was hard.

I was told very gently at my post-op that the tumor wasn’t benign. I appreciated that. How could you look at someone with 30 staples in her head and say, “It’s malignant, and we didn’t get all of it during the operation,” and not feel awful about it? I was diagnosed with grade 4 brain cancer–glioblastoma, or GBM. I started radiation and chemo.

I prayed a lot throughout the whole period. A lot. I was 54 years old by that point, which I knew was something to celebrate. I kept thinking how wonderful it would be if I got another 54. Then something interesting showed up in the news; the Chicago Cubs had won the pennant for the first time in 108 years, which, if you’re counting, is 54 times two. That reminded me to hold on to hope because crazy things really do happen sometimes! I may not get another 54 years–very few people live to be 108, but I thought that was pretty neat!

The surgeons were unable to remove the whole tumor. I began radiation and temozolomide (TMZ) but my radiation oncologist also decided to tell me about Optune, a wearable, portable FDA-approved treatment for GBM in adult patients. Before beginning treatment, we talked about the potential benefits and side effects. But I trust my medical team. I was ready to try it!

Shaving my head was quite the experience. My hair has always been one of my vanities; it was thick, blond, and below my shoulders. I really liked my hair, but I knew shaving it was something I had to do in order to use Optune. nCompass™ support at Novocure provided an electric shaver, and a friend of mine who is a hairstylist took care of it for me. It’s gone–on array change days, my bald head is very apparent. On the bright side, showers are much quicker now. See? I’m playing the “Glad Game!”

Learning to use Optune was an adjustment for me in every way. For a while, I was on TMZ and Optune at the same time, but during a later MRI, imaging found three new spots on my brain. My doctor decided that for me, the TMZ wasn’t doing its job. We moved to other treatments and continued with Oputne, which I had already come to appreciate.

Remember when I told you I name things? I named this Optune Hope. She goes everywhere with me. I wear special hats to protect her from rain and the Texas sun when I’m out, and someone is always available to change her arrays for me. All of my kids are grown now, but two of them have chosen to live with me, and they are a huge help. I even have a carabiner rigged by the toilet, so I can hang her there when nature calls. If I’m in a public restroom, I drape the cord over the back of my neck and hold her out and away from me. These aren’t difficult adjustments to make, but they sometimes take consideration and planning.

I no longer drive and have tapered off some of my community involvement. The loss of independence I’ve experienced because of my condition can be frustrating. I’ve always been a giver and extremely self-sufficient, so it’s been a challenge for me to ask for and accept help from others. But I am grateful to be alive and have the opportunity to spend more time with those I love.

I am selective with my activities, choosing to engage in things that make a difference to others and bring me joy. With my doctor’s permission, I remain active in my church and Rotary club and view city council meetings live via online streaming. I’ve lived in the same house for almost three decades, so I have a strong network of truly good people who get me where I need to go and bring me positive energy.

I am continuing to learn how to practice self-care. In my quest to improve my overall health, I work with a dietitian to make healthier food choices. One room in my home is now devoted to yoga and free weights, which I do with the okay from my doctor. I would be remiss if I stated any of this is easy, but I don’t mind the effort!

The team at Novocure has been uplifting and positive throughout my treatment. My nCompass™ Device Support Specialist (DSS) visits me monthly to check in with me, and my nCompass™ care coordinator calls regularly to help me reorder supplies if I need them.

It is important that people use Optune as much as possible, and the percentage of time they spend doing this is referred to as their monthly usage. My doctor mentioned that Optune is recommended to be used at least 75 percent of the time, which translates to 18 hours a day, including time spent sleeping. My DSS tracks my monthly usage reports. As far as side effects, I did have some skin irritation, which I managed with help from my doctor. On array change days, I dry brush my scalp and apply coconut oil to keep the area moisturized, being sure to thoroughly wash it off and dry my scalp before replacing the arrays.

Sometimes people ask me what I’m wearing on my head, and I just explain to them that it’s a treatment for brain cancer. I don’t mind talking about it. I’ve had folks ask me if it’s a cool cap–I don’t even know what that is. I explained to my four-year-old grandson that I’ve got a boo-boo on my head, and this could help.

My life with GBM is very different, but it’s very good. I choose to enjoy it. I fill my life with good things and positivity. When I was discharged from the hospital after my operation, a physician assistant told me, “You’re not gonna break, Ashley! Live your life!” More recently, another specialist said to me regarding my treatment plan, “We’re not outta bullets.” I just loved that. It seems that since my diagnosis, others around me are playing the “Glad Game”, too.

I love my faith. I love my family. I love my life. I intend to do everything possible to keep it that way.

Thank you.