Ellen Byron

After a Medical Crisis: What They Don’t Tell You.

I’ve had three medical May Days in my life. (I’m not counting an emergency C-Section because the preeclampsia that necessitated it had been rearing its ugly head for weeks.)

When I was twenty-five, a cramp that wouldn’t go away turned out to be a rare tumor. (You can read about that particular adventure here.) Five years ago, a routine angioplasty revealed 70% percent blockage in my widow maker artery and suddenly I was the not-so-proud owner of a stent.

And then there’s my recent hospital stint.

Sunday, April 9th was our twenty-ninth anniversary. Jer and I semi-celebrated by drinking cheap champagne and watching Succession. I’d had what felt like a muscle pull in my lower right abdomen for a day or two, which I humble-braggingly credited to an over-zealous round of sit-ups. I didn’t think much of it. I even went to dance class that morning.

But as the night progressed, so did the pain until it became so severe my husband rushed me to the hospital. As a general rule, I hate painkillers. I refused to take them even after my C-Section. But that night, I begged for morphine. Begged for it.

I spent the night in the ER. The next morning, a nurse appeared in my room and announced in a cheery voice that I was free to go. ER had been unable to diagnose what was causing my acute, blinding discomfort, so they recommended I see my primary physician. Still in the worst pain of my life, I stared at her in shock. I insisted on seeing a specialist. She told me the old way to see a non-ER doctor was to admit myself the hospital.  I immediately did so.

These were my views for the next five days…

Such a LaLaLand hospital view

The gastro-intestinal team was convinced they knew what was wrong with me but even though appendicitis had been ruled out, a CT scan had picked up a small gallstone, so Surgery refused to clear me. For two days I wasn’t even allowed to swallow water as they did more tests with the assumption they’d be removing my gall bladder. They booked the procedure for noon on Thursday.

Noon on Thursday came and went as I swabbed my mouth with a mini sponge for moisture and they waited for the results of the final test. The test results were negative, surgery was off, and GI took the lead on my case.

My first meal when I was finally allowed to swallow. I’ve never been so glad to see Jell-o in my life.

I finally left the hospital early Friday evening with my gall bladder intact and a diagnosis of Ileus, an intestinal and colon dysfunction. Now, I’m in no way denigrating the care I got. The hospital was great, the healthcare providers all top notch. Still, I’ve never been happier to bid a place goodbye.

On Saturday, I felt euphoric as my daughter drove us to San Diego, where I was in good enough shape to do a signing at Mysterious Galaxy. We spent the night with cousins we hadn’t seen since prior to the pandemic. I even had a doctor-approved glass of red wine.

The gorgeous hillside behind my cousins’ stunning home.

Sunday, I woke up after only three hours sleep gasping for air.

Remember how I mentioned my stent May Day? And how shortness of breath was my only symptom? I’d also been diagnosed with mild asthma, so my panicked, sleep-deprived brain bounced back and forth as I tried to figure out whether I was suffering from asthma or another blocked artery.

 And then I remembered what they don’t tell you when you have a cataclysmic health event.

  1. You’ll have post-medical crisis PTSD. A medical trauma doesn’t just take a toll on your body, it takes a toll on your mind. Post-tumor, even though I was physically fine, I bottomed out emotionally. When I got my stent and learned I’d been 30% away from death’s door, I got super depressed. I’m still working through the emotional roller-coaster engendered by my recent hospital stay.
  2. You may never know what caused your condition. After my tumor was removed, I peppered the doctors with so many questions about what may have caused it that one of them finally threw up his hands and said, “We’ll probably never know, so stop asking and move on with your life.” When I got my stent, I was a veteran of low-fat eating and exercising more than I ever had in my life – dancing 5-6 times a week. I have no idea what caused my Ileus. But I’ve made adjustments after each illness to address potential underlying issues and am doing the same now.
  3. It ain’t over when it’s “over.” After they removed my weird tumor, it was five years before I could relax and not assume every small twinge in my body was the tumor’s return. I’ve already shared about how I’m on constant high alert for another artery blockage. And the fear that my recent illness might be a precursor to something worse will be lodged in the back of my mind until I undergo additional tests. Plus, the GI nurse-practitioner told me there’s a strong chance my condition could reoccur.

Reminding myself of what they don’t tell you also reminds me not to be a prisoner of my maladies. I’m home. I feel much better. And I have exciting events to look forward to in the coming months, including the adoption of a new furry friend.

Like the iconic song from Follies goes, I’m still here. And boy, am I grateful for that. And a huge thank you to the gods and goddesses of health crises for timing this last one to conveniently fall right between Left Coast Crime and Malice Domestic!

Readers, has a medical situation taught you any life lessons?

51 thoughts on “After a Medical Crisis: What They Don’t Tell You.”

  1. Thank goodness you’re feeling better, Ellen! My bout with undiagnosed depression taught me the importance of being willing to talk about how I’m feeling with my family. Friends and family want to help when they can. Have a great time at Malice!

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  2. Oh, Big hugs, El! Yes, Since I turned 30 just a “few” years ago, my body took on a mind of its own. Weird pain syndromes swooped in to take a permanent residence, etc. Then I started with the amputations. First a mini snip- then larger- wait, now you want my leg?! Thankfully, I still own that last one. The bottom line is we can spend our time “what iffing” the situation, we can let it overtake us, or we can power through with the help of our loved ones. Not every day will be a good one, but it’s all worth it. Your tribe won’t let you fail. ❤

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  3. So happy you are getting stronger. Take care of you.

    Outside of 3 childbirths, I got nothing.
    But dealing with my hubbs and daddy’s medical issues are enough for me! I am learning that I am not being given anything I truly can’t handle, even though I scream I can’t handle this!
    I have learned that I care so much about others over myself, that many friends are calling me a current day Florence Nightingale

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  4. Ellen, thank you for your honesty about some things people don’t talk about that much. The emotional toll of any major health crisis lasts a long time. I’m just so glad to hear that you’re feeling better and have so many great things to look forward to!

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  5. Ellen, thank you for writing so honestly about something people don’t talk about that often. The emotional effects of a major health scare are not always acknowledged. I’m just glad to hear that you’re doing better and have so many wonderful things to look forward to!

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  7. Too much for one person! I love that you can make it to Malice! I predict you will still look great! You always do. My old body is breaking down right out there where you can see it. Arthritis, mostly, which is no mystery. Write on! Conference on!

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  8. First off, thank goodness you’re better, Ellen!

    My best friend, a woman I’ve known since I was 12, recently was diagnosed with a brain tumor. They were able to remove it, thank God, but her quest to know “what caused it and how do it keep it from coming back?” reminds me of yours. She is convinced medicine is against finding the “root” of th disease and only wants to treat the tumor – the symptom. She isn’t quite ready to embrace the fact that medicine may never have her answer – and they know it.

    I am quite convinced – let’s call it 90% – that my recent brush with breast cancer was caused by taking a medication for my MS that had a “rare, but serious side effect” of, you guessed it, my exact form of cancer. Of course none of my doctors can be sure of that, but it’s just too coincidental. (Especially when you throw it the fact that a) I have no genetic markers associated with cancer and b) my form of cancer was so much different than my mother’s). My neurologist already immediately stopped that MS treatment, so clearly she’s of the “we can’t be sure, but we aren’t gonna keep doing that” school of thought as well.

    I’m not letting my recent diagnosis radically change my life. But one thing’s for sure: I will never hear the phrase “rare, but serious, side effects may include” the same way again.

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        1. So glad things went well, Liz–but of course also sorry you had to go through such an ordeal. Looking forward to seeing you at Malice–and you *are* a very strong person. Brava!

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  9. Life lesson? After they removed the benign tumor from inside my spine I learned not to take walking for granted anymore. And the whole “not knowing” thing? When I was pregnant with my first kid I constantly asked my doctor impossible questions. Finally he said, “If you were made out of glass I could answer that.” And with the tumor they kinda shrugged and said, “pretty common, we think it’s hormonal because it happens mostly to middle-aged women.” Oh. Well, okay then!

    Watching you go through this was stressful for ME, Ellen! Can’t imagine how it was for you. But I’m glad you’re over the immediate crisis and we can enjoy Malice!

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    1. Becky, I remember your own ordeal. God, that was scary. And thanks to you and the Chicks for being with me on that thread. With Jer out of the country and poor Eliza doing the best she could but dealing with a job and her own May Days, I really needed the support you all provided. xo

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      1. Talking about my surgery—before, during (well, you know), and after was really important to me, too. It helped me process everything, vent, worry, laugh … all the little things we do to cope with the unknown and unforeseen.

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  10. Thank goodness you insisted on staying at the hospital and that you’re feeling better now. Such important “what they don’t tell you” observations. I’ve been cancer-free for 13 years now but still get the occasional, “oh no, it’s come back” fears. Here’s hoping that’s your last “medical May Day” ever!

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  11. Yes, SO glad you insisted on being admitted to the hospital, El! Great that the New York gal took control and wouldn’t take no for an answer.

    I had a bit of a wake-up call last month when, during my work-out at the gym my head started to feel funny–I couldn’t think straight and felt super ditzy. Robin took me to the ER, where they discovered my blood pressure was at a whopping 210. I was rushed to a STAT room where they hooked me up to an IV and then did every test known to mankind–MRI, CT scan, EKG, blood tests, you name it… Everything was completely normal, and once my blood pressure came down, they released me and said I could go back to my normal life. I’m pretty sure it was the result of dehydration, and ever since then I’ve been really good about drinking more water. Scary. But a good lesson.

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  12. Wow, El,on both counts. Wow on the roller coaster ordeal, and wow on your courage and amazing handling of things. Thanks for being vulnerable and informative in this post.

    I haven’t had any major medical issues so far (besides my own very premie birth). But I’ve definitely had to adjust and process stuff happening to parentals: my mom’s sudden stage 4 cancer diagnosis, my FIL’s out-of-the-blue heart attack, and my dad’s getting ambulanced from central CA to SoCal and eventually getting a much-needed heart transplant. It all reminds me to be grateful for every moment we have in our lives and with our loved ones.

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  13. Glad you’re feeling better. Yeah, it takes a while to adjust after something like that. Especially in the middle of the night. In the middle of the night, everything is the worst thing ever.

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  14. Aw, El–I am so sorry. The mental/emotional aspects of such a horrible experience are truly as important as the physical ones. I hope time helps fade your scary memories and erase every one of them as much as possible STAT. And I also hope seeing good friends at Malice will help, and of course there is that furry twinkle in your eyes TK. I am on Amtrak right now, and if there were any wood around me to knock on, I would–but I am thankful for my health and wish everyone smooth and speedy healing on all fronts.

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  15. Ellen, I can’t believe you got out of the hospital and went straight for a 3-hour or longer drive to San Diego. You’re made of steel! The only time I’ve had an emotional reaction to a hospital stay was after my second knee surgery. For really good reasons, my husband couldn’t be with me. Still, the second day I got “droopy.” My sweet nurse came in and asked how I was doing and I told her I was feeling low. She said, “Oh, that happens all the time on the second day. What you need is a hug.” And she hugged me! It was chicken soup for the soul.

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  16. I am so glad that you are okay Ellen! I’ve had my share of health crises, including heart surgery, cancer, an ectopic pregnancy, and traumatic gallbladder removal. I have learned to pay close attention to my body and trust my instinct when something just doesn’t feel right. And I have learned how fortunate I am that I have always had fantastic family support to help me through each physical challenge. It made the mental and emotional recovery easier, although you are right that this is a little talked about aspect of recovery from a health crisis. Enjoy Malice Domestic and take it easy, the world needs your humor and positive attitude Ellen.

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  17. El, I’m so glad that you’re okay and hope that this week puts joy in your heart. I totally understand about the health trauma aftermath…it’s very hard not to worry. But when I get spiraling, I try to remind myself, as my surgeon said, that we all have to live with uncertainty and the best we can do is focus on the present day. Easier said than done, I know.

    To all who have shared–big hugs. xoxo

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  18. Wow, you authors have really gone through a lot, and you all seem stronger for your experiences. Kudos to you and keep all of your wonderful books coming for all of us to read. I have been in the hospital four times since my birth. None of them have been like all of yours though. The first was actually a clinic at age 5 to have my tonsils out after they were radiated at ag 2. The second was in 6th grade after discovering a blood clot in my leg while playing (that one could have killed me in two weeks the doctor said). The third was to have all 4 wisdom teeth out as they were impacted while I was getting ready to go to college, and Daddy’s insurance would not pay unless I stayed in the hospital overnight. The fourth was when I ended up getting bacillary dysentery when I was in my late 20s. That was the longest stay and then recuperation at home (way over ten days). I guess I was too young or too naive in all of those instances to understand what could have happened. But since dealing with my parents’ medical issues and there were many and getting older, I have gotten more concerned also about my health. One of the hardest things was when Hubby Dearest went to have his hip replaced and they had you sign the do not resuscitate paperwork. That brought it all home and took a lot to get over. Luckily, he was fine. But now I do worry over any little thing and pray a lot more than I used to. God bless all of you and keep you well and safe in the future.

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  19. Ellen, we were terrified while you were in the hospital and the doctors were struggling to diagnose you. So glad you’re feeling better! Have a blast at Malice — but be sure to rest a bit, and stay hydrated.

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  21. I went ER with severe abdominal pain, shortness of breath. The ER doctor eliminated heart attack & severe indigestion. My symptoms started after an extremely spicy Chinese meal. I felt like my abdomen was expanding. I kept thinking about Alien! Finally his diagnosis was constipation and sent me home with an enema kit. No way. My son drove back to the ER & I got admitted. Turned out to be a blockage in intestines caused by undiagnosed diverticulosis. First of 5 colon surgeries over almost 2 years. About 5 years later I thought it was back. The tests showed a mass in my abdomen. I went into surgery expecting colon but it turned out to be cyst on an ovary. The size of a volleyball. Imagine my surprise when I woke & my sister told me that I had a hysterectomy. She said that when the surgical nurse came out to tell my son & sister, my sister said well I’m sure that she’s not planning more kids. So instead of only removing ovary, I had a complete hysterectomy.

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  22. I had my hearing tested in 2007 to find that I had significant hearing loss in my right ear. Easily explained, I cheerfully replied, that was the ear that was turned to the jets when driving jetways at the airport and they didn’t give us earplugs. “Well, I’m ordering a CAT scan because it could be a brain tumor.”

    Needless to say, it was not. But I had a very terrifying couple of weeks while waiting to get it done and then waiting for the results.

    And every time I get a headache I think well, that might be a brain tumor. If I was a character on a soap, it would be.

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  23. Ellen, I am so sorry for this most recent medical trauma (I didn’t know about the others–oh my gosh!!!) AND so very happy that you are okay and on the road to recovery. These things stick with us long after the get well cards come off the shelf. Sending many hugs and lots of love. ❤️

    PS please forgive the delay. I couldn’t get WordPress to work on my phone –ack!

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  24. May 1st is the 30th anniversary of waking up blind in my right eye. By May 1st of the following year, I had been hospitalized 5 times with exacerbations affecting my speech, balance, walking ability, ability to hold objects, and memory; moving into my Mom’s house with my young family because I needed help. I was diagnosed with multiple sclerosis. It took 3 years to move back out; after speech, physical and occupational therapy. It changed the course if ny life and shaped the person that I am today.

    I also had to have a cardiac pacemaker installed a few years back. They don’t prepare you and there’s no way to explain the sorrow and unexpected crying that you do as you get used to the mechanical assist to your existence, and how much more deeply you appreciate the simplest things as you recover.

    I am grateful for the life lessons and growth that disability has given me.

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