“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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16 thoughts on ““do i look like i’m dying?”

    • Hugs for such a thoughtful comment.

      Moments such as these make me think about life and death…and what I do with all the time between. Something we only seem to do in older age, when time is on the wane.

      In this case a young person is forced to face the truth…and does it with a firm resolve to live joyfully until the end.

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      • Hi Hugmamma,

        I Googled my name tonight and read the beautiful piece you wrote about me. Thank for your kindness and compassion. My mom was indeed at the American Cancer Society Hope Gala. She asked to sit in the back because she knew she’d break down.

        My health is steady at this time which I am over the moon about! I hope you or any of your blog readers will write me leslie.s.krom@gmail,com I also have a blog http://www.lesliekrom.blogspot.com. I am in the early stages of writing a book. Even though writing was never something I cared for, I can’t stop!

        Blessings to you and yours,
        Leslie Krom

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        • Your comment made my day! When I write about someone it’s never with the thought that I’ll hear from them. Hearing from you reaffirms my faith in the good that the Internet can do.

          I’m delighted to hear that you’re health is stable and that you’re delighted with that. Folks like you who have extraordinary lives inspire those of us who are inclined to take our ordinary lives for granted. You teach us that each moment is precious and should be cherished…and lived to the max.

          You are wise to write a book. You’ve so much to teach all who are willing…and waiting…for a voice that shines like a candle in the dark. I will write another post bringing my readers up to date on your status.

          I’ve found writing cathartic and healing. Writing our stories down brings perspective to our lives. Hopefully the good upstages the not-so-good. I thank God every night for giving me life, and for the people I love and who love me. At the same time I pray for everyone. We’re all trying to do the best we can with our particular set of circumstances. I believe folks are inherently good. Life is challenging. Some of us can keep positive no matter the obstacles, while others succumb and their lives spiral downwards.

          You, dear Leslie, are a gift from God. Your life draws us closer to Him. I see only His goodness in you. You have turned all negativity into light and love.

          You are His instrument…write your book!

          hugs and much aloha…i will visit your blog and recommend it to all… 😆

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  1. I think what upsets me slightly about stories like this (besides the obvious fact that someone is ill) is that these “live life to the fullest” scenarios often seem to involve spending lots of money – spending lots of money when there are probably big hospital bills and maybe not full time work. I love that she might get to do things like visit Vegas, but I question how much harder it might be for some people whose parents can’t financially support things like this. They need to find a quieter way to live life to the fullest, while recognizes even more limitations than “just” the illness.

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    • Thanks for speaking your mind. Obviously you have your doubts about how people deal with a death sentence.

      I share another person’s story, especially when it highlights how good my own life is by comparison. Beyond that, I cannot judge with what the individual is dealing. I can only access what I see and hear; not their inner turmoil.

      People who don’t know me very well only see what they see, and hear what they hear. They don’t know my daily grind, my struggles. They don’t know of my coping mechanisms. They may not be the same as their own. As long as no one is harmed, what crime is there?

      We all deal with our own realities in our own ways, based upon what we bring to the table in terms of life experiences, resources, support, personalities and so on. How I cope can be totally foreign to someonelse, and vice versa. I don’t judge other people…I hope other people don’t judge me. I try not to live according to the expectation of others. Been there; done that. At 63, I’ve finally learned to live my own life…my way. I no longer ache for the approval of others, or denigrate myself because I don’t do things others feel is best for me. Who are they to know what’s best for me? I certainly don’t know what’s best for them.

      Better we all accept each other as we are. Leslie Krom is going about her life…her way.

      i wish the same for you…and that no one faults you for it… 😉

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  2. Reading this hit home for me. My father has been battling multiple myeloma and sadly there is no cure. I will keep leslie in my prayers and hope to make contact with her.

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    • God bless you. How long has your dad had multiple myeloma? How has he dealt with it? How have you…and others in your family?

      i too will pray for your father…that he finds what joy he can…in all the moments he continues to share with loved ones… 😉

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      • Glad you enjoyed the story about my Mom, hugmamma. She overcame cancer, bypass surgery for her heart, and many other things. She was still working at age 78 when she went in for another operation. That one she didn’t survive. I do think she lived life fully and did her best to see her family had a good life as well as her love and support. She died at 79, one day after her birthday.

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  3. Stories like this make my troubles seem like ants walking from Chicago to New York. Every time I’m with my grandbaby I think of living and loving in the now…every time I hear my favorite music, eat my favorite dishes and talk with friends. Endings always break my heart, so I try not to think of them. I will deal with them when they come. Thank you — and Leslie.

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    • I think Leslie wise to start working on her own happy ending while she can. Being in control means she can excise those things that are meaningless…and prioritize all that bring her joy…like her mom, friends, fun times in Vegas…and hot guys!

      i’m hoping i can emulate leslie when my time comes…truly… 😉

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    • I’m sure you would have cried silent tears as I did if you’d heard Leslie speak in person. Her words, brave demeanor, and tears would’ve moved the hardest of hearts. I’m certain contributions increased after she spoke. hugs for the comment…means a lot! 😉

      Like

hugs for sharing some brief thoughts...and keeping them positive

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