Juanita’s Story: Love is how you stay alive

Juanita’s Story: Love is how you stay alive

Pineapple upside-down cakes. Choir practice. The crack of a baseball bat. Deviled egg sandwiches. Nature walks. Heartfelt talks.

When everything else falls away - when we push the chaos and triviality into the background -  it is the simplicity of life that emerges. It’s the little things. The affection of a favourite pet, the satisfaction from a hard day’s work, the joy of piling the kids into the car for a drive-in movie.

This is especially true for brain tumour patient Juanita van Ton Martel. You see, these memories are Juanita’s memories, her reflections on a life well-lived and deeply loved.

We’ve come to believe a survivor is someone who fights, battles, never gives up. But when it comes to a malignant brain tumour, a true survivor is someone who knows, says Juanita, that “Love is how you stay alive long after you are gone.”

Yes, Juanita has ‘fought.’ She has soldiered through endless tests, blood samples and drug trials. She has endured a litany of symptoms too long to list – vision loss, weight change, memory loss, depression, seizures and pain. Now, after nearly 20 years of living with her tumour, Juanita could write a book – or several – on the subject. While her disease has undeniably limited her quality of life, it is Juanita’s memories, perspective and attitude that give her hope for the future landscape of brain tumour treatment and prevention in Canada.

But now, Juanita is planning her funeral.

“It’s not a morbid thing,” she says. “You love those people and know yourself better than anyone, so it should be you planning it. Think of it as the trip of a lifetime - you’re leaving and everyone will be there to see you off.” A stickler for detail, Juanita has thought of everything:  the music, who will sing, the flowers, the casket, even the pastor. “I left nothing out. I don’t want those decisions to be left for my family to have to deal with. To me, it’s a responsible thing to do.” 

You can tell a lot about someone by how they sign their e-mails and notes. “Love and squishes xoxo” is Juanita’s trademark sign-off. She’s guided by the belief that “no one exists alone, we must live or die, and it’s so much better to have others remember or know you because of the love you gave.”

When she looks ahead to Christmas and wonders if she will be here to celebrate it, Juanita thinks about special moments and heartbreaking memories. Alberta ranchers with a close, loving brood of six kids, Juanita and her husband made sure Christmas was a special time for family celebration and community kindness.

Juanita’s family enjoyed the company of many others at their table. They made it a habit to invite a family or person that had no family to be with at holiday time. Even the children invited people they knew that had no place to go.

“I loved being a mom and everything that meant,” she reflects. “I don’t ever recall wanting them to go back to school in the summer, or needing a break, no matter how many kids were there. Sometimes there were as many as 11 for the summer! I just threw another potato in the pot.”

But Christmas also triggers memories of 1996, the year her serious health issues began, when friends who had visited at Christmas couldn’t understand how she could forget every detail of their holiday together. “Christmas came and I looked through the photos of the holidays but had no memories of them. We had company from out of town and I had no recollection of them being there. For me, it was as if somebody had told me I had been to Africa the day before, which seemed ridiculous. Yet they had photos of me being in Africa as proof that I had been.” 

Experiencing dizzy spells, vision issues and confusion, Juanita thought she was crazy. “I didn't speak of it to anyone for fear they would think I was crazy too.”

In March 1997, Juanita says her symptoms escalated. “My husband and I had been in town running errands after lunch and I hadn’t been feeling well. My husband told me the aisle he was going to and I told him the aisle he could find me shopping in. Once there, however, I felt very unwell in my solar plexus, with sharp shooting lights in my head. I had never felt these things before and thought some fresh air may help me. I went quickly to pay for my purchases and that’s all I remembered.”

Unable to find her in the store, Juanita’s husband found her in the vehicle, half-in half-out, straddling the bench seat. Her clothing was disheveled and she was mumbling and incoherent. That’s when her brain tumour journey began – a journey that brought her sadness, loneliness and pain but also the motivation and strength to persevere and push her boundaries as much as possible.

Juanita’s marriage could not survive this medical ordeal, and she knew she needed to survive financially and support her children. Incredibly, she enrolled in massage therapy school, working until midnight on her schoolwork in spite of her painful and frustrating symptoms. 

“I continued seeing the neuro-psychologist to go through my symptoms and help me get a better understanding of them,” Juanita recalls. “I advised him, that while in my college reading, I would have to read one paragraph over and over before I would actually get an understanding of it. It was so frustrating for me and took up so much extra time. He was so upset that I was in college and wanted me to quit immediately, but I just couldn't. My teachers didn't know about my disabilities and I wasn't about to tell them. I didn't want any special favours.”

Juanita graduated, against all odds. And, as her disease has progressed, she keeps on ‘graduating’ in a sense, moving to what she describes as “my new normal, where I adjust to whatever I have lost and then move forward again.”

Nearly 20 years after her first symptoms, Juanita has learned to live with a disease she has little control over, by focusing on what she CAN control in her life. She opted out of brain surgery as recently as 2012, knowing in her case it presents more complications and side-effects than benefits. Her most recent diagnosis is Anaplastic Ependymoma with High Grade Glioma Cells. Its position on the Anterior Horn of the Left Temporal Lobe is extremely rare for a tumour typically located in the spine. Doctors also diagnosed an additional complicating tumour in Juanita’s sinuses. 

“I decided to give myself two weeks to make my decision if I was going to have surgery, radiation, and chemo. I spoke to no one during this time - no children, no doctors, no one that would influence my choice in any way. After two weeks I decided I wanted nothing. No treatment. Some people think I’ve given up, but I know I’m following my own path.” 

While it’s easy to get caught up in the sadness of Juanita’s story, hers IS a story of hope. Hope is about moving forward when everything seems hopeless. Juanita doesn’t google her disease, and she sets the timer for 15 minutes when she feels angry or needs to vent. “We made a decision not to let this disease ruin our lives. It has pulled us apart at times, but isn't it better to talk about it rather than to run away from it and hide? For those who love me unconditionally, they have the utmost patience with me and understand the evil of the disease and are able to understand and divide the two. We are even able to laugh at the silly things that cancer does to me. It’s just life. I want them to have some happy memories long after I’m gone.”  

Perhaps the best story that sums up Juanita’s perspective is a story shared by her close friend. Recently, Juanita had a biopsy and she was told by her doctor that she had only two months to live. Shortly afterwards, they were standing in her garden together, admiring Juanita’s new lilac bush. Juanita commented that she didn’t know the colour of its blooms, but looked forward to finding out in the Spring. 

“He realized at that moment that I was not listening to what the doctors were telling me about being dead by Christmas, but that I was already looking forward to Spring. I fully expected to be alive to see my flowers bloom.” 

Grateful for her caregiver and the help she has received from loved ones as well as support organizations, Juanita hopes future brain tumour patients will receive the support they so desperately need. “The best way to cope with this illness is to be surrounded by those you love and by advocates and caregivers so you can gather strength and know you’re not alone.”

We thank you for sharing your story, Juanita. Love and squishes, xoxo. 

Update: We are deeply saddened by the news that Juanita passed away on June 21, 2016 but happy that she got to see her flowers bloom.

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Story posted: October 2015


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