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I made an unexpected visit to the UVA Emergency Room yesterday.  I thought I was having another seizure.

I’d woken up feeling horrible – like I was going to pass out.  My muscles were twitching.  I felt spacey and very tired.  Scariest of all, I had pressure and twitching on my craniotomy scar, and my face looked a bit puffier (I didn’t think that was possible – but it was).  We were afraid it might be a brain bleed.

Marshall called my oncologist’s office and she suggested I take an ambulance to the emergency room.  So Marshall called 911 and soon two nice men came to take me away.  Mom and Dad took Hannah to school (Hannah was an absolute rock), and Marshall followed the ambulance to the hospital.  He and I planned to rendezvous in the emergency room.   (I know, very romantic.)

In the ambulance, it was very similar to the night I was first diagnosed with brain cancer.  I was weak and shaky, afraid I was having another seizure.  If I was seizing, did that mean that my brain tumor was growing back and pressing on my brain again?

At the emergency room, they got me in quick and did blood work and a CT scan.

Thank goodness, it was not a brain bleed.  In fact, the CT scan showed that all was well inside my tired head – no bleeding, no edema, and nothing growing back!  That was a huge, huge relief.

Then we waited around for awhile.

The doctors and nurses were great and very thorough.  My blood work looked good, but after more testing they discovered I had an infection.  Normally, this wouldn’t be a big deal.  But because I’d begun weaning off my steroids in the past week, it was.  Getting off the steroids has been hard for me, so I’d been sent to an endocrinologist for help.  Happily, the emergency room doctors took the added step of talking to my endocrinologist.  Go UVA!

Apparently, when  person is weaning off steroids, their cortisol hormone levels are lower than usual. This makes their body less able to deal with stress.  (Cortisol is the “fight or flight” hormone – your body normally ramps up its production to help you respond to stress, whether that stress is in the form of an important meeting, a saber tooth tiger running after you, or illness.)  When you are taking oral steroids and you develop an infection, you need to increase your oral steroid dosage in order to help your body be able to deal with that added stress.  Well, I didn’t know I had an infection, so I hadn’t increased mine.  In fact, I’d decreased them per doctor’s orders since we were trying to wean me off the oral steroids completely.

So the infection was a double whammy for me – I was sick without knowing it, AND I didn’t have enough cortisol for my body to respond properly.  The increased stress and my body’s inability to deal with it brought on the seizure-like symptoms I was experiencing.

So at the end of the day, this is really, really good news!  In fact, it’s lots of good news:

I don’t have a brain bleed.  In fact, my brain looks pretty great – no regrowth of the tumor, no edema, no nothing (except, well, brain)!  The CT scan also served as a preview of my first follow up functional MRI, which is schedule for May 11th – so some of the “scanxiety” I may have otherwise had is no longer an issue.  Hooray!

The doctor didn’t think I had a real seizure – my discharge papers diplomatically called what I had “weakness.”  This is awesome, because it doesn’t reset the “seizure clock” which prevents me from driving for six months since my last seizure.  Since my last official seizure was in January, if all goes well I will still be able to drive again in July!  Double hooray!

Thank goodness, the doctors discovered an infection we otherwise wouldn’t have known I had.  It’s possible that this infection has been contributing to my lethargy of late.  Now that we’re addressing it, maybe I won’t be so tired!  Triple hooray!

And finally, the doctor told me that many people who have had brain surgeries have seizures afterwards.  So seizures may be something I just need to learn more about and learn to deal with in the future.  The whole idea of having a seizure – and especially blacking out as a result – has been scary to me up to this point. Who wants to pass out?  But maybe as I learn more about it, the prospect of passing out with a seizure won’t frighten me so much.  People have seizures every day and live through them.

If they can, so can I.  Quadruple hooray!

After about five hours in the ER, I got to go home.

I am very, very grateful for how everything turned out.  The doctors put me on some antibiotics, upped my steroids (I can start weaning off them again later, when I’m over the infection), and sent me home.  I am pretty amazed at how thorough they were, and how they took the time to loop in my endocrinologist’s office.

I am also amazed at how quickly things can take a turn for the worse…or a turn for the better.

Twenty-Four hours before this trip to the emergency room, I had the best day I’d had in a week.  I thought for sure I was getting better.  Then whammo – I am in the emergency room literally fearing for my life.  And then just as quickly, the doctors discover it’s just a little infection, complicated by the medication I happen to be on.

Is kind of weird how you can think you’re totally safe, and then not be.  Or think you are totally in for it, and then be okay.  I will try to remember this lesson if I ever have to be driven to the hospital in an ambulance again.

One last lesson I learned…

I learned another valuable lesson that I am embarrassed to admit, but will (we’re all friends here, right?).  I went into the emergency room yesterday scared and sick for sure, but deep down, I also thought that I had a trump card in my pocket: I was a cancer patient.  And not just any cancer patient, I was a brain cancer patient – and one who had just recently had surgery.  I had it bad, folks – so move out of my way, and put me at the top of the triage list because I am really sick here!  

Well, maybe not.  Yes, I’m a brain cancer patient, and yes, a possible brain bleed is scary.  True, I’ve got it bad in some ways.  But in some ways not.  Fortunately for me, I had a curtained room in a bigger room that I shared with several other patients.  The curtains gave us some privacy, but also allowed virtually all conversations to be heard by everyone there.  There was an 80 year old woman there who was suffering from a long bout with pneumonia.  She could hardly breathe.  When I heard her cough, I could only imagine how scared she was.  There was another woman who was in a lot of pain, and who may have also been a prisoner.  Not an easy situation either.  Another man “coded” in the next room – the doctors had to use paddles on him to try to bring him back to life. I don’t know whether or not they succeeded.

I guess there’s no place like an emergency room to remind you that everyone has challenges that they have to face and figure out how to go through.  Although it may be tempting at times, I don’t think it’s possible to compare my own suffering to anyone else’s.  Suffering is an individual thing, so comparisons are rarely helpful (or accurate).  Yesterday’s visit to the emergency room was a good opportunity for me to remember that everyone experiences suffering in life.  And mine isn’t the worst that is out there, by far.


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16 Comments on "Brain Tumors, Seizures, and Me – Oh My!"

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Michael Bush
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You rock, Fran. But you know that. I am glad this space helps you. It helps me too, particularly with perspective. You and your family remain in my thoughts and prayers. Here’s wishing you continued quadruple hurrahs.

Jan Ferrance
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Fran, I heard of your experiences awhile back from a friend who has been praying for you. I decided I needed to find out more about this amazing women with this tremendous strength, faith and outlook on life. I came to your website and was blown away by what I read, and still reading. You are one amazing women. Your openness and honesty has been strengths to more people than you will ever know. I saw you and listened to you talk at Curisillo 2weeks ago and was filled with such awe and strength that my words could not convey.… Read more »
Cristina
Guest

Fran! What a scare!!! Thank God it was only a false alarm!

Pat Laurenz
Guest

So glad that all worked out ok. Keep the faith baby! And I know you have that covered. Continue to keep you t the top of my daily prayer list. Love and hugs

Linda
Guest

I was sad when I read the Cursillo posting yesterday about you heading to the ED with a seizure. Thank God of your outcome yesterday! Your words are so beautiful about other’s pain and suffering. Something we all need to hear. God bless you and continued prayers for a complete recovery. And yes, UVA Med Center rocks!

Peggy Hopkins
Guest

Thinking of you every day, dear Fran. I would never pretend to know what you are going through, but having spent so much time in the hospital with GBS, I understand the emotional roller coaster of fear, relief, joy, guilt, anger, sadness, pride, and every other emotion that goes with a serious illness. You are giving so many people such hope. You are demystifying something that is seldom if ever talked about – all with self deprecating wit and humor. You are so loved and supported by people all over the world.

Mary Ann Marinchick
Guest

So glad everything is a quadruple hooray!! Keep healing and know that we’re praying for you and cheering you on!
Mary Ann & Bob

Chuck McCurdy
Guest

Quadruple hooray indeed. Marshall told me maybe ten days ago that you were giving a talk at Cursilio. I saw that as a good sign. But brains in stress get so tired so easily. Sleep more though all of us in the Soup Kitchen can’t wait to have you with us again. Happy Mother’s Day. Chuck McCurdy

Claire duFief Greer
Guest

Wow Fran. I have a TON of first hand seizure experience – all since Christmas Day – a mutual friend from SMA helped me a great deal as well- would love to talk with you when you are able! Prayers and continued Good healing and a newfound joy to this Mother’s Day. Xoxo Claire
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