Ellen Byron

The Tumor That Changed My Life

Social media promotion, which all authors have to do these days, means we spend a lot of time sharing about our lives as well as our books . But this is something I haven’t talked about in years.

When I was twenty-five, I had a cramp that refused to go away. I thought it was a bladder infection. It turned out to be a tumor so large it was actually pressing on my bladder. I found this out on a Friday. By Monday I was in the hospital being prepped for surgery.

You need to know where my life was at the time. I was not in a good place at all. I was sleeping on people’s couches in Manhattan when I wasn’t retreating to my parents’ house in Westchester County. I had no social life and crappy part-time jobs, one of which was handing out cigarette samples on Second Avenue while wearing a Styrofoam straw hat. Technically I was pursuing an acting career, but in reality I was paralyzed and hiding.

My tumor was what’s classified as a hemangiopericytoma. These are so rare that every time I tell gynecologist I had one, their eyes light up as if my tumor was the carcinogenic equivalent of meeting a Beatle. As one doctor said a bit enviously, “You can go your entire career without ever seeing one of those.” My gynecologist at the time suspected the tumor was attached to my uterus. He told me they might have to do a hysterectomy, but wouldn’t know for sure until he “got in there.” Secretly, he told my parents there was a 95% chance they’d have to do the procedure. Was the tumor benign? Malignant? No one knew.

My parents felt totally helpless. I, on the other hand, had never felt more in control of my life. I planned all the things I’d do if faced with infertility or worse, a death sentence. I’d travel through Europe. Study acting in London. Have fascinating affairs. I’d be Mimi in La Bohème, except a suburban half-Jewish, half-Italian version.

After my operation, I came to in a hospital room on the Obstetrics floor, a terrible place to be if you’ve had a non-elective hysterectomy. Luckily, I hadn’t. It turned out my tumor was attached to other tissue and just parked on top of my uterus, so I was moved to the general surgery floor. The verdict on the potential of my tumor was incomplete, and specimens were sent all over the country to determine its status. But for whatever reason, I knew I’d be okay. It was just a weird freak of my genetic nature. You’d think that would have made me euphoric. Instead, I became deeply depressed.

In trying to figure out why I was so depressed, I  had to face an unpleasant realization: I was so stuck in my life that I was looking to a potential health disaster for motivation. Once the crisis was over and everything returned to normal – or in my case, stasis – I crashed emotionally. It was a painful insight into my worst self. And yet…

My old apartment on Columbus Avenue between 83rd and 84th streets, courtesy of my cousin Felicia Telsey, who still lives there.

A year later, I had my own apartment. I wrote a play that got produced and published, putting me on the path to a writing career. I barely ever went to Mom and Dad’s because I had an active social life in the city. It took months to get the final verdict on the tumor –it was benign – but that was old news by then. Although as anyone who’s been through a similar health crisis knows, you’re not really out of the woods until you hit the five-year mark. Until then, every pain or illness is “Oh s–t, it’s back.”

I know now that I also had a bad case of PTSD. But what really stays with me is the moment I hit bottom and realized I was looking for a death sentence to grant me a life. That’s when I crawled to a phone at my aunt’s apartment where I was crashing at the time, called a therapist, and sobbed, “Help me.”

Recently I was complaining to a friend about how other people’s Facebook posts often make me feel less-than. I’ve never been to Paris, so I get a pang whenever people post snapshots from the Eiffel Tower. If either my husband or I even remember our anniversary, we consider it a win, so I think “what’s wrong with us?” whenever I see people gushing about their soul mate spouses. Everyone’s lives just look so perfect and happy. My friend finally said, “El, remember that Facebook is where people post their best selves.”

I’ve thought about the concept of “best self” a lot lately. I’ve had plenty of ups and downs in my life since that tumor. Plen-tee. But I have a family and friends that I love. A career as a writer in the entertainment industry. And tomorrow marks the release of A Cajun Christmas Killing, the third book in my Cajun Country Mystery series.

truck (4)

None of this would have happened if at twenty-five I hadn’t faced a very hard truth about myself.

That moment when I lay on the floor of my aunt’s apartment in a fetal position, overwhelmed with depression and self-judgment, taught me a lesson that changed my life – sometimes it takes acknowledging and confronting your worst self to help you find your best self.

Readers, have you had a life-changing moment?

63 thoughts on “The Tumor That Changed My Life”

  1. Ellen, I totally hear you on how Facebook can sometimes make you feel “less than.”

    It took me getting fired from a long-time job for me to realize that I was miserable and really needed to be doing something non-corporate. I still have a “day job,” but at least now it’s to fulfill very specific things: pay for high school tuition and pay the bills while I pursue writing.

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  3. Good post. I suffer from the “less-than” syndrome in spades and sometimes have to avoid social media for a bit while I remind myself of all the good things going on in my life. For me, my daughter’s death from cancer at 34, has made me take a hard look at how I want to be spending my time, because I might not have nearly as much as I’d planned. I’m so glad you were able to find help and point your life in another direction–one that gives us books! 🙂

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    1. Thanks, Mark. Something like that is a real wake-up call. I was a little scared about being so brutally honest, but I thought other people might take comfort in knowing they’re not alone when it comes to feeling less-than or stuck

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  5. Thanks for sharing, Ellen. I also had the not-fun experience of ending up in a maternity ward and (almost) having a hysterectomy when I was in my twenties. In my case it was endometriosis — and one in a long series of surgeries. But I never had (biological) children. So glad your tumor was a wake-up call, and not an end!

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    1. Thanks, Lea! Isn’t that awful? The woman in the bed next to me had been pregnant with twins when they diagnosed ovarian cancer. She lost everything except the two children she already had – and came to in the maternity ward. I’ll never forget that.

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      1. We don’t always choose when to be strong — right, Ellen? I did become a mom — I adopted my four daughters as a single parent. They were born in Thailand, Korea, Hong Kong and India, and came home when they were ages 8-10. I’m now the grandmother of eight.

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  6. LOVE this post. It’s so easy to look at what you’ve missed, rather than what you have. Kudos to you for taking charge of your life. I’ll check out your book. We lived in Baton Rouge for two years so the setting appeals to me.

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  7. Thanks for sharing, Ellen! I know what you mean about social media… I’m guilty of only sharing the positive life experiences and keeping negative things private. But we truly all experience negative, generally on a daily basis! My outlook on life changed when I was diagnosed with thyroid cancer 18 years ago. I had to endure 2 rounds of the radioactive iodine treatment (including being in isolation at home for a week) when it appeared the cancer was coming back. At that point I decided life was too short to waste being a “people pleaser” all the time and it was time to do what I wanted to do and not worry about what other people thought!

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    1. Good for you, Kim! And I have to say, I’ve found your Rett Syndromes fascinating and informative. That’s a journey you’re sharing that’s educating all of us. I honestly look forward to reading them every time you post, and learning more about the condition.

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  12. Ellen, what a wonderful story. And look where you are now!! Like everyone I know, I’ve been through many life changing events—becoming a widow, discovering I had Stage Four Lymphoma. I know I’ve evolved and I’ve —ahem —matured somewhat. But no one event changed me. The person I am today developed gradually. And still is—developing gradually.

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  13. At 22 I was raising two small boys on my own and trying to get a diagnosis on a mystery illness that was starving me to death. I had always been the fat clutz, now I was barely a 100 pound skeleton. FInally the doctor stopped blaming me (anorexia) and discovered it was Crohn’s disease. Following surgery they told me I was unlikely to survive much past 30 because, while they were seeing many cases nowadays there were no real effective treatments. Three day later I auditioned for a local theatre company’s play (one dream was to be on broadway). I got the part of Baby John in West Side Story because I am a female tenor and can pop my voice like a young boy’s voice changing. I also got a role in Fiddler on the roof as a villager and Bottle Dancer. Dream one achieved. Okay I settled for local semi pros instead of new york but I was in front of the footlights hearing the roar of the audience. I became a professional stagehand and worked many touring shows and concerts as they came through my area. I love the theatre. Here I am 25 years later my sons have grown and I have a granddaughter (dream two) I have two more sons in high School (surprise dream three since I was to have my tubes tied during that first surgery to avoid putting too much stress on my body), I drove Semi in order to travel the US (dream three). I have also been surviving neuropathy caused by one of those treatments that didn’t exist when I started this journey. and Breast Cancer (I was told it had a 95% chance of recurring in the first 5 years ten year ago). I no longer dance. I use a wheelchair because my neuropathy makes me fall and steroids left me with brittle bones. I need help to do some everyday things but others I stubbornly do myself. But I am here, I achieved dreams I didn’t know I could have and now I’m trying a new one, I am going to try to write a novel within 1 month in November. I wanted to be an English teacher but instead I’m going to try to become a novelist. Dream number four here we go!

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  14. Ellen, my friend, your courage and candor are inspiring! So grateful you’re still here — and that things turned out so that Eliza is here, too!

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  15. Oh my goodness, Ellen, I’m teary. You are brave and amazing–so sorry you had to go through that, but you’re an inspiration. Look what you’ve accomplished!

    Hugs for your experience and cheers for your book birthday. ❤

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  17. Such a life-affirming, kick-ass post. I’ve had a couple of “wake up calls.” The day my dad was diagnosed with terminal stomach cancer. He was 42. I was 14. Right about then, I realized that life wasn’t fair. When he died, my mom didn’t even know how to sign a check. I vowed to be independent, even if I married (and I have been). And my mom reinvented herself, though it took a while…
    I was diagnosed with breast cancer 9 years ago. I can remember saying to the surgeon…that can’t be true. I don’t smoke. I drink in moderation. I’m a marathon runner and a triathlete, for God’s sake. I’ve been a VEGETARIAN since I was 18. Apparently none of that mattered. But I am a survivor.
    Oh… and the day I found out about the cancer, I went to the local diner and ordered bacon and eggs. I always missed bacon.

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    1. Judy, wow! Thank you so much for sharing that. I can’t imagine what your dad’s illness must have been like for you as a teenager. And then to go through breast cancer. You’re all too familiar with “Oh s–it it’s back” syndrome.

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  18. Hi Ellen, I’m glad everything turned out well for you. My moment was when I was having Horrendous Cramps and I wanted to die! They hurt that bad and every time I had a period I had to go to the ER because of the pain. Not fun! In 2015 I had a hysterectomy because I had Bad endometriosis. The surgery went really well and I’ve healed well. 3 months after the surgery I was diagnosed with Fibromyalgia and I hurt all the time in my hips and thighs. I’ve started Physical therapy to help with the pain and it is helping but I believe I still will have soreness all my life because of the Fibro. I still keep moving even if I am in pain because its good to move! P.S. I love your books! Best Wishes Mary

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  19. El, your post brought me to tears. I can’t imagine not having met you and become your friend–and of course we all know you are so talented that I also can’t fathom a world without your writing! Then I read the ordeals so many of you have been through and I literally polished off the Kleenex box. Thank you for the reminder to some of us to count our blessings and live each day to the fullest. xo

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  20. I believe it’s safe to say I’m older than many of you. Lisa, eventually we all have to cope with difficult issues. And somehow we do. And we go on.

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  23. Just saw this and really appreciate your struggle through that health crisis. I am in awe of you, Ellen, and your story. As for the less-than syndrome, I was writing plays and there was this playwright I didn’t now, who had a name that was so close to mine, but she was so much further ahead of me in the playwriting world! I was so glad that I could finally meet her and see what a cool person she is, and now wish you the best on your newest book. Best of everything to you and much success.

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  26. Your serious health problems put everything else in life into perspective. Your talent and creativity is wonderful. Wishing you great health, happiness and enjoyment.
    In 2012 I was diagnosed with breast cancer – chemo, radiation and recovery.
    A year later 2 thumb surgery.
    A year later right wrist surgery.
    A year later left wrist surgery.
    Now RA.
    Life is filled with trials and tribulations which we have to face and conquer.

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  27. Ellen, I read your story with tears in my eyes, very powerful! Our son told his dad last week in a text, he is 46 and we don’t see him often, but he said he had to get off of social media because everyone else had perfect lives, going on wonderful trips, and on and on. His dad texted back, remember it is Facebook and people lie. It made me so sad to think their are those people who suffer with issues, our son has tremendous low self esteem and he is a true introvert. So I can see with seeing a steady stream of highs, for him, can cause great lows. I wish you the very best Ellen (my grandmothers name was Ellen). Blessings to you and yours. I have your new book on my to be bought list❤️ Thanks for all you do for others in sharing this story.

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    1. Diana, thank you so much. I feel for your son. I have close family members who suffer from depression and it’s brutal. I’ve struggled with it myself off and on for years. Tell your son he’s not alone. A lot of have issues with the perfect lives myth encouraged by social media. I have to remind myself of this all the time!

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  28. Pingback: After a Medical Crisis: What They Don’t Tell You. – Chicks on the Case

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