Long Distance Love

Monday, April 29, 2013 - 7:45am

What do you get a kid brother with brain cancer for his birthday? Especially when you live four hundred miles away?

This question, occasioned by my brother David's auspicious twenty-fifth birthday this year—one he's fought for fiercely over the last two years since his diagnosis, detailed here—brought me to Mary Lou Mattioli. A breast cancer survivor who was diagnosed in 2007 and also treated at Roswell Park, she contacted me through Facebook with her own remarkable story of gift-giving and long-distance love.

Mary Lou Mattioli lives in Tonawanda, New York; her three sisters live an hour's drive away, south of Buffalo. The sisters, who are in their sixties and seventies, all have busy lives and families; before her diagnosis, they saw each other just a few times a year, for Christmases and birthdays. When Mattioli learned, in 2007, that she had breast cancer, they found this distance prevented them from performing the typical tasks nearby loved ones can provide, like rides to treatments or home-cooked meals.

But Gloria, Kay and Janie, who had stuck by their little sister's side throughout their shared childhood in an orphanage, and later a foster home, still wanted to let her know that they were looking out for her. So after one of the dinners that followed her diagnosis, they marched her out to the parking lot and opened up the back of her sister's SUV.

Inside it was a giant basket, full of presents—one for each day of her upcoming chemotherapy treatments. “You can open one a day,” they told her. “And if it's a really bad day, you can open two.”

The first present, a small rainbow-catching trinket that threw colorful rays across her living room, was one of Mattioli's favorite gifts.

”It was two dollars, nothing special, and one day it fell off the window and broke,” she said. “[But] it was so soothing. I'd come home, and I'd be so tired, and I'd just sit on the couch and watch the rainbows.”

As Mattioli's treatments continued, so did the gift-giving.

"That first basket lasted thirty days, and then the doorbell rang, and there was my other sister, with another basket for the next thirty days,” she recalled. “And it kept expanding." Soon, other family members and friends started sending gifts to her sisters, who placed them in the baskets.

Eventually, her sisters' generosity inspired Mattioli to respond with thank-you emails for each day—emails that also included her feelings that day, treatment updates, and other bits of important information about her fight with cancer.

Among the many benefits this brought to their lives, the email chain had one practical, positive side effect for Mattioli: she got more sleep. Thanks to her proactive communication habits, her sisters no longer had to ring her up for constant updates.

Mattioli noted that had she been more familiar with the technological tools we take for granted today—Facebook, blogging platforms—she might have used that as another way to take charge of communicating about her illness, and suggested that patients in her position today do the same. (Below, we offer some resources for starting your own blog.)

“What about friends and family members of those with cancer?” I asked, still thinking of my brother and his upcoming birthday. “What should they—we—do to connect?”

When talking on the phone, Mattioli said, “keep it short and sweet,” being conscious of your loved one's energy level. “Long conversations where you're trying to get information out of people are not good,” she said. “If the person with cancer wants to talk, they will. But leave it in their court.”

If the opportunity to listen arises, take it: listening is a gift, in and of itself. ”It's important to have, not a disinterested third party, but a distant third party,” Mattioli says. Far-away friends and family members can often serve as valuable sounding boards, helping cancer patients and their caregivers to blow off steam and work through problems.

“What about gifts?” I pressed. “Anything that you'd particularly like to get as a cancer patient?”

The gifts that Mattioli remembers most vividly, she said, were ones that underscored the gift-givers' understanding of her struggles.  “My sister made a chemo bag, which I said she should patent,” Mattioli said. “I could carry my water in it, and snacks, and games that I could play when I went for my treatments.” Another sister made a journal with a book with several pages in it, labeled, 'The benefits of not having any hair.' Inside it, she listed things like, ‘You can just get up and leave the house and you don't have to wash your hair.’ These showed Mattioli that her sisters weren't afraid to engage with even the toughest aspects of her treatment.

However, not all gifts have to be serious. “Once I grabbed a present from my gift basket… and it was gummy boogers,” recalls Mattioli. “I was feeling absolutely horrible that day, but I cracked up. Turns out it was from my nephew, who was four years old.”

Other funny gifts Mattioli received during her treatment were a clown wig (a nod to her hair loss during chemotherapy), and a beeping watch her family had once hidden in her wedding bouquet as a practical joke. Then as now, she said, "It relieved us from being tear-jerky."

To Mattioli, even her sisters' silliest, smallest presents were priceless. “They didn't have to be extravagant,” she said. They just served as “a little reminder to say, 'somebody thought of you today.'”

Emboldened by Mattioli's words and inspired by her sisters' example, I finally felt ready to rise to the occasion of my brother's birthday, even if I had to celebrate him from afar. I realized that I, too, had the ability to help collect gifts from other far-flung loved ones, as Mattioli's sisters did, and to help them understand his unique needs. So I put together an email with a long and quirky wish list—everything from nausea-fighting ginger tea to spare socks—and sent it out to my own loved ones, with a heartfelt email updating them on everything he's faced since his 2011 diagnosis and inviting them to celebrate his birthday with me.

To my amazement, pathos-filled responses—and packages—poured in from every corner of the country. For example, my friend Karen, a chemical engineer, mixed him a custom “power potion” from essential oils to energize him during his treatment. My friend Jessie sent a pair of silly glasses. And Heather dropped off the aforementioned socks.

As for me? I got an incredible gift of my own for my brother's birthday: when his most recent radiation cycle wrapped up, he decided to buy a bus ticket and come to visit me, four hundred miles away. We had dinner, played games, saw a concert together, and talked about what the next few years would hold for us both. We also realized that even though gifts and e-mails can certainly serve as stand-ins for our true feelings, there really is no substitute for quality time.

So, since then, we've set up regular Skype sessions on Fridays, times when we settle down with a cup of tea together and talk about what's on our minds—whether it's about big topics like cancer, or the silly little stories we've always shared to make each other laugh. It's indescribably wonderful to see Dave's face, hear his voice, and know that he's okay for now, even though I can't always be there to protect him.

It's also wonderful to see how gracefully Dave's responding to all this long-distance lovin' in his life. As it happens, last time we talked, he was working through a stack of thank-you cards.

RESOURCES

KEEPING FAMILIES INFORMED

CaringBridge

This website offers cancer patients and caregivers a blog-like platform for updating family members and friends about the latest news, as well as tools for making, sharing, and delegating caregiving tasks online.

Google Drive

If you don't already have a Gmail account, now's the time to create one. Not only does it offer options for shared calendars (great for keeping busy family members organized), it also provides access to Google Drive. As the name suggests, Drive functions like an online shared hard drive, allowing users who may be miles apart to work off the same spreadsheet or Word document—which can come in handy for sharing and tracking information about appointments, finances or to-do items.

Tumblr

New to blogging? Forget about Wordpress. Tumblr is a far simpler blogging interface that anyone can learn to use. Use it to post updates and photos, link to articles of interest, and keep loved ones informed.

SENDING LOVE FROM AFAR

WellBaskets

This online gift basket company specializes in baskets laden with healthy foods to help patients heal. For example, their chemotherapy basket contains ginger candies to combat nausea, licorice to fend off anemia, and dried cherries for pain relief, among other thoughtful items.

The Pampered Patient

Founded by a caregiver, The Pampered Patient has resources for finding cancer-specific products and gifts and building customized care packages, as well as a helpful list of “intangible gift ideas” (linked above) for those who are looking for alternatives to the traditional gift basket.

Choose Hope

This Houston-based company donates a portion of the proceeds from their cancer-centric baskets for general research. One is even customized for caregivers, whose needs are all too often overlooked.

You and Who

For patients in the 18-34 set (read: people who might not be thrilled by another stuffed animal), You and Who, a Buffalo-based company, might be a cooler choice for a pick-me-up. Each of their t-shirts features a striking, colorful graphic designed by a different artist, and they donate a t-shirt for every shirt purchased. Several graphics focus on forward momentum, the future, or metamorphosis (like the butterfly shirt linked above), making them inspirational choices for anyone who's trying to keep up the good fight.

ROSWELL PARK RESOURCES

Roswell Park CarePages

On CarePages.com, patients can create custom websites to help stay connected with loved ones during a healthcare challenge by providing updates, sharing photos, receiving messages back and even connecting with others going through similar situations.   

Ryan Rose Weaver is a writer and teacher living in New York. Her younger brother, David, was diagnosed with an anaplastic astrocytoma in February 2011. He is currently being treated at Roswell Park Cancer Institute.

Read other posts by Ryan:

Our First Brain Tumor: Early Lessons Learned (September 2012) 
Adjusting to the New Normal (November 2012)
Back to Work: Coping With Cancer in the Workplace (January 2013)
Traveling With Cancer (January 2013)
What Should Siblings Do in the Face of Cancer? (February 2013)
Juggling Cancer and Classwork (March 2013)