“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.

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living to die…

Not a topic for which I was prepared, but one which came up at the fundraiser hubby and I attended last night for the American Cancer Society.

I almost didn’t go since my back has been bothering me for sometime now, and had gotten worse in recent days. I tend to overdo when I encounter spurts of energy and wellness.

Reorganizing my house after our recent remodel, crouching over plants and weeds for 3 days during a spate of warm, sunny weather, hosting a coffee for friends and neighbors as a meet and greet for the designer and contractor who’d helped refashion my master bed/bath, and preparing an entree to be served at our community center‘s weekend meal for those in need…has me realizing that I am indeed…getting older. No more packing it all in with nary a concern for tomorrow.

My body is definitely trying to tell me something. “Hey! Slow down! Let’s save some for another day. In fact, let’s preserve for tomorrow. No need to shorten our life by cramming everything into a nano-second. Take a break, wontcha???”

And so I did, take a break.

English: Gossamer Albatross II as presented at...

English: Gossamer Albatross II as presented at Seattle’s Museum of Flight WHERE: Museum of Flight, Seattle, WA, USA WHEN: Sometime between May 2 and May 9, 2004 WHO TOOK IT: GURoadrunner WHAT CAMERA: circa-2000 Vivitar digital camera Released into the public domain, but if you want to credit me by name drop me a message at w:User_talk:Guroadrunner. Attribution/credit not required. (Photo credit: Wikipedia)

The fundraiser took place at “The Flight Museum,” slightly south of Seattle. It was amazing  to be seated at tables situated directly beneath massive, vintage airplanes. Hanging overhead were the real McCoys. I felt like a child, staring with mouth open as I looked up into the “sky.” And the “sky” wasn’t that far above us.

The evening proceeded as expected. Preliminary speeches were made by the power couple hosting the event and the doctor who helped co-chair. Meanwhile the food was being served, and the live auction quickly got underway. Of course hubby and I can’t be counted upon as big-spenders at such events. Dropping thousands for a suite at a football, soccer or baseball game is not our style, nor is having a local celebrity cook a meal for us and 6 other people in our own home something we entertain seriously. Our home is cozy…not spacious by any stretch of the imagination.

We did raise our paddles to fund a child with cancer going to summer camp. And we threw in a few more bucks here and there to grow a contribution for some worthy project. We had missed the silent auction which preceded the sit-down portion of the evening. So we saved ourselves a few dollars there.

English: Photograph of The Beatles as they arr...

English: Photograph of The Beatles as they arrive in New York City in 1964 Français : Photographie de The Beatles, lors de leur arrivée à New York City en 1964 Italiano: Fotografia dei Beatles al loro arrivo a New York City nel 1964 (Photo credit: Wikipedia)

The evening ended with dancing. Sounds from our past emanated from the lobby above as the Creame Tangerine played their instruments and sang their hearts out. Our table of my husband’s coworkers and their wives, all friends of ours, wend our way up the stairs to partake of the merriment.

Soon we were jiggling and wiggling to the beat. Even the boss and his wife, Stein and Linda, were flayling around the dance floor, singing the lyrics of songs we’d not heard for so long…the Beatles, Neil Diamond, and others whose names I couldn’t even recall. But Stein could. Every so often he’d lean my way and shout above the din the name of some well-known singer. Mercy! I thought. No wonder he’s the CEO and President. He knows everything!

While all the elements were there for a smashing good time, the highlight of the evening was a young lady who spoke. Leslie Krom lives…while dying…of cancer. My next posting honors her story…

…as only she can tell it…

………hugmamma.