“do i look like i’m dying?”

…reads the title to Cosmopolitan Magazine‘s recent article about Leslie Krom. It goes on to say “Leslie Krom, 28, has been given a tragic diagnosis. She probably won’t live past the age of 35. Her reaction? Live large–each second she has left.”

Writer Anna Davies captures Leslie’s story in a beautifully written article. But to hear it in Leslie’s own words as she stood onstage only yards away from where I sat at the American Cancer Society fundraiser last night, was indeed gut-wrenching. I don’t know if I’d have wept fewer tears were I not so in love with my own beautiful daughter, the keeper of my heart and soul.

At times I wanted to embarrass myself and stride boldly onto the stage to enfold Leslie into my arms to quiet the tears that interrupted her words now and again. Even now my eyes well up as I remember her confidence, halting at times because of the diseases that afflict her…cancer and epilepsy.

Leslie’s pleas were to “savor the moments” she and others like her, have yet to live. Her tears weren’t those of self-pity, although my mother’s heart broke when she recalled how middle-schoolers taunted her bald scalp and bloated body upon her return from battling cancer. Reliving the bad times seemed to energize her argument for ensuring that children with cancer be  afforded the opportunity to be loved as they are, and to thrive as best they can, looking forward to the wonderful times the rest of us take for granted.

A beauty, a red-head, well-spoken, always smiling, a sense of humor, a spokesperson for those unable to speak so eloquently, a child any mother could be proud of…I give you…Leslie Krom…as told to Anna Davies for Cosmopolitan Magazine.

   Recently, I was at happy hour with some friends when a cute guy walked up to me. “What does a pretty girl like you do with yourself?” he asked, clearly flirting. The bar was buzzing with young people burning off postwork energy. And while I looked like I belonged there, I knew I was different. I paused to think for a second, then responded, “Mostly, I take care of myself. It’s kind of a full-time job.”
   I’m sure he interpreted that as my being a high-maintenance diva with a trust fund and a calendar full of salon appointments–which couldn’t be further from the truth. What I meant was, I have cancer. It’s going to kill me very soon. And dealing with that is a full-time job.
  
 A Really Bad Hand
   A few years ago, everything in my life was clicking into place. Despite being diagnosed with lymphoma, a type of blood cancer, when I was 13, I’d been in remission for more than 10 years. I had a cool new job, a cute apartment in a trendy Seattle neighborhood, and weekends filled with yoga classes, volunteering, and hanging out with friends.
   When I was 25, my doctor had given me more bad news: I’d developed uncontrolled epilepsy. When I started having frequent seizures, I had to quit my job and move in with my mom. But within a year, doctors had come up with a combo of meds for me, and my seizures were becoming a bit more manageable. I convinced my mom that I could go back to living on my own.
   I thought my life was almost back on track, but I was in for a major shock: I had cancer again. This time, it was a rare type called multiple myeloma. And even though it was still in a very early stage and could remain that way for several years, my doctor said that once it began growing–and it would–it would kill me. Not in decades, but in years. Basically, I was going to die, most likely before I turned 35.
   I felt like I’d been hit by a sledge-hammer. Wasn’t it enough that I was a childhood cancer survivor? That I had epilepsy? How could life be so unfair? I don’t even remember how I got home, but when I did, I just curled up in bed and hibernated. I couldn’t come to terms with my new future. I wouldn’t get married. I wouldn’t have kids. Any chance of having a typical life was over.
   A Life Worth Living
   After two weeks of sleeping and crying, I finally told my mom. We’d been through so much together–she’s always been my main source of support–I felt guilty putting something this huge on her plate. But she jumped right into action, immediately urging me to focus on the good. It was hard to see that there was anything good about my life at first, but I started seeing a therapist, and little by little, I saw it. I have my mom. I have friends. And I’ve always had a backbone of steel.
   I needed that backbone when I broke the news to my friends. It’s really uncomfortable to sit there while peoploe cry and feel sorry for you. And while they all meant well, sometimes what came out of their mouths pissed me off. One friend held my hand and intensely said, “I know you’re dying, and I’ll be by your side every step of the way.” I yanked my hand away and snapped, “I’m not dying!” It’s not that I’m in denial–I know I have a terminal disease. But if I lived my life thinking about how I’m dying, it would be impossible to go on.
   I told my friends this: I want them to treat me like Leslie the girl who bungee jumps every chance she gets, not Leslie the girl who’s dying.
   For the next couple of years, I focused on having fun. I searched for the best sushi spots, went on girlie getaways, and smiled my way through a few online dates. But as the cancer progressed, it was time to make a huge decision about my treatment. A stem-cell transplant or radiation had better chances of fighting the disease. But I chose a low-dose round of oral chemo–the least invasive option, with the worst odds against my cancer.
   It was an easy choice for me. I didn’t want to spend my life feeling weak or in a hospital. I didn’t want to be away from the people I love. I chose quality of life over quantity. Some people felt I wasn’t fighting hard enough. But I say, there’s nothing to battle because I already know cancer will never win. Friendship and love are stronger than cancer. My memories are stronger than cancer. And my spirit is way stronger than cancer.
   I won’t say having cancer doesn’t suck. I often sleep for 23 hours straight, I have joint pain, and I have no idea what’s going on inside my own body. But I see an opportunity: I know when and how I’m going to die, so I’m not wasting time. I’m doing everything I’ve ever wanted to do–like going on all the rides at the Stratosphere in Vegas and diving with sea turtles off the coast of Mauinow. And I plan to keep flirting it up with hot guys at happy hour until it’s time for me to go.

“Out of the mouths of babes.” Could we who have lived longer said it any better? Savor the moment…

…for each one adds up to…a life lived…fully…

………hugmamma.

Advertisements

breast cancer, “reaching out”

A disease that has touched so many people, both victims and loved ones alike, breast cancer is like a magnet for human kindness. Family, friends, colleagues, women from all walks of life, have come face to face with an “enemy” that alters the world they knew, both those who survive and those who eventually succumb. And all who share their world are debilitated as well. So it is no wonder that these loved ones should lend their support in whatever way possible.

The Susan G. Komen Foundation is possibly the largest, most visible vehicle  affording everyone an opportunity to donate to the fight against breast cancer. On our Mediterranean cruise this summer, I had occasion to witness Holland America Line’s efforts on behalf of the Foundation. Begun in 2007, every one of the Line’s cruises, 500 in all, conducts a 5K deck walk for all interested passengers. The entrance fee of $15 includes a t-shirt and a wrist band, both sporting the Susan G. Komen logo,  as well as an invitation to a Pink Lemonade Party after the event. The proceeds are donated to the cause. Although recurring tendonitis in my ankle kept me from the walk, I made the donation and along with other bystanders, cheered on the walkers. It was a festive, and worthwhile, occasion. Congrats to Holland America Lines, a corporation that cares. Many others have also joined the fight. Kudos to all of them!

My English friend recently learned that a beloved friend of hers since their younger years in the UK, discovered she had breast cancer. In her late 60’s or early 70’s, it was a shock. Three weeks after learning of it, surgery was done, and she is now preparing for chemotherapy. My friend, an avid knitter, quickly made a “prayer shawl,” and mailed it to Catherine, who is now never without it.

Not as large as an afghan, the shawl falls below the waist, wrapping about the shoulders. I can imagine the comfort it’s giving both friends, who feel connected by a tangible form of their mutual love for one another. I’ve asked my friend to teach my daughter and I how to replicate the shawl so that we might donate them to women in need of our comfort, and prayers. I was unable to pick up the intricacies of the craft when I attempted to learn before, but maybe this time my daughter will “get it” and help me. If all else fails, I might have to purchase the yarn and have my friend’s nimble fingers work their magic. Wish me luck!

A Wall Street Journal article, “How Hope Travels With a Wig,” mentions the saga of a “traveling” wig. Its most recent trip was to the home of 40-year-old Alicia Gaudio. A couple of weeks ago, the Mt. Kisco, N.Y attorney learned she had breast cancer. She had a mastectomy this past week, and will soon be undergoing chemotherapy. Considered a talisman for cancer survivors who have worn the wig over the course of the last 4 years, Ms. Gaudio, her husband and 2 young children, are hoping she will be returned to good health, like the women who have worn it before her.

“The gift–a stylish brown wig…will be delivered by Nicole Rowe, who wore it after she lost her own hair during breast-cancer treatment last year. ‘We call this the healing wig,’ Ms. Rowe, an optician, plans to tell Ms. Gaudio.” The owner of the wig, Vanessa Pacella, a psychotherapist in Wellington, Florida, paid $5,000 for it after she was diagnosed with the disease.  ” ‘When you wear this wig and look in the mirror, you see yourself as a healthy person…There’s a lot to be said for positive energy.’ ” Others who have worn the wig were all friends of Ms. Pacella’s, themselves cancer survivors.

Researchers have found that human beings through thousands of years of civilization, have assigned “mystical possibilities in amulets and talismans,” especially in times of crises.  ” ‘It’s not voodoo,’ says Barbara Stoberock, a researcher at the University of Cologne in Germany. ‘It can be explained. If you have a lucky charm, and believe it helps you, there’s a psychological mechanism. It lifts your beliefs in your own capabilities, and gives you a boost.'”

Jeffrey Zaslow, who wrote the article, explains that the wig can serve as a compass for the women who wear it, giving them a sense of direction when they feel lost. Knowing that others who have worn it and survived, can give those still in the trenches, their bearings once again. For those who have gone before, the wig has offered “a shared strength, and a path back to health.”

Before the wig is delivered to Ms. Gaudio by Ms. Rowe, she will have it washed and blow-dried at a local salon. She will also relay the message that the 3 previous wearers are well. Ms. Rowe will also share the following anecdote.

Last winter, after Ms. Rowe went through chemotherapy, she promised her 3-year-old son, Alex, that her hair would return when the leaves were back on the trees. The first time Alex saw her in the wig, he got excited. He ran to the window, and even though it was still winter, he shouted, ‘Mommy, I can see the leaves coming back on the trees!’

Ms. Rowe explains that the “wig’s magic reaches beyond those who’ve worn it…It helped her little boy imagine the possibilities of spring.” Through the magic of “reaching out,” Holland America Lines through its 5K deck walks, my girlfriend through her “prayer shawl,” and wearers of the “healing wig” through their shared strength, and so many others like them, continue to ensure that, “hope springs eternal.” 

for my sister, as she recovers, huge hugs…hugmamma.