Faye Rapoport DesPres

So, I had brain surgery

There, I’ve said it — right in the title of this blog post. On December 8 of last year, I had brain surgery to remove a tumor called a meningioma from the sheath that surrounds the brain and separates it from the skull. I had the surgery at Brigham and Women’s Hospital in Boston, where I worked with a top surgeon who also teaches at Harvard Medical School.

I found out about the meningioma in August of last year. It was an incidental finding on an MRI ordered for a totally different reason; a neurologist I follow up with annually about headaches I experienced eight years ago noticed that the reflexes didn’t seem right in my left foot. Not wanting to scare me, she didn’t mention the reflexes. She just suggested an MRI as a follow-up to the one I’d had eight years before, even though the headaches had disappeared. Had the neurologist asked about my foot, I would have told her that I had plantar fascia surgery in 2014 (which explains the change in the reflexes), and she never would have ordered the MRI. The universe works in mysterious ways.

The first indication that something was wrong came when the neurologist’s office called to say they wanted to repeat the MRI with contrast. It’s never good news when they want to repeat a medical test, so I got scared. All the receptionist could tell me, however, was that the doctor “didn’t seem overly concerned.” With only that to go on, I had to return to the MRI facility, have the test again with contrast, and notice the carefully composed expression on the tech’s face when she said, “I hope everything works out,” instead of the usual “Have a great day.”

Several days later the neurologist called with the news. I had a tumor, a meningioma. I was terrified. No one wants to learn that they have a tumor in their head. The neurologist tried to calm me down by telling me that the tumor was relatively small, that meningiomas are almost always slow growing and benign, and that it had probably been there for years. She didn’t think anything needed to be done except a repeat MRI in 3-6 months to gauge its rate of growth, and she assured me that if a neurosurgeon decided that the tumor should be removed, it was in a spot that was easily accessible for surgery. No one could guarantee it was a meningioma until it was removed, but she was quite sure that was what I had.

I wasn’t comforted by her positive attitude. By a cruel trick of life and history, my mother-in-law had been diagnosed with a meningioma in 2007. If you’ve read my book, Message From a Blue Jay, you know about her journey, as I described elements of it in some of the essays/chapters. She was diagnosed with a meningioma and told she’d go on with her life, just as I was. But when a neurosurgeon went in to remove her tumor, he didn’t find a meningioma. He found a glioblastoma multiforme, one of the deadliest forms of brain cancer — the same cancer Ted Kennedy would be diagnosed with a few years later. My mother-in-law passed away twenty-two months after she was told they’d  made a mistake.

For three weeks I lived with a deep-seeded, soul-shaking fear. Thankfully, a close friend of my parents is a retired neurosurgeon in New York. He agreed to look at my scans and reports, and to take them to a top neuroradiologist there. After reviewing my case, they agreed that what I had was almost certainly a meningioma. Then they went one step further…they asked me to get my hands on the MRI I’d had for headaches eight years before. Knowing if the tumor was there at that time would help them determine how fast it might be growing.

The place where I’d had the eight-year-old MRI had closed down, but I tracked down my records in the possession of the company that had bought the old company out. I sent the images to New York, and then waited for our friend to return from a vacation with his wife. Those were some of the hardest weeks of my life…knowing I had a tumor in my head, not knowing how long it had been there, not knowing how fast it was growing, and not being sure it was benign.

Finally, our friend returned from his vacation. My eight-year-old records were waiting in his mailbox, and he took them, again, to his top radiologist. Sure enough, they spotted the meningioma. It had been completely missed by whoever interpreted the images at the time. Over the eight years since, it had grown from 1 cm to 2 cm, meaning it had likely grown slowly and was, as they’d predicted, almost certainly benign.

Still, it had grown, and there was no way of knowing if it had grown rapidly and then stopped, or grown very slowly over the entire eight years, or had started growing rapidly in recent months. When meningiomas grow, they push on the brain because the hard skull is in the other direction. Depending on where they’re located and what part of the brain they’re pushing on, they can cause a wide range of symptoms. In some cases they can become involved in veins or grow into areas of the brain that make them difficult to remove. Sometimes they grow so slowly that they never cause symptoms — and occasionally, they even stop growing. As a result, some people choose to simply “watch and wait” and to have regular MRIs in the hope that they will be one of the few lucky ones who never have to have surgery. But those are considered the more unusual exceptions. Most meningiomas grow and eventually need to be removed. If they can’t be removed, there are radiation options that can slow their growth or stop it — although meningiomas can start growing again after a period of no growth.

I decided to consult with a neurosurgeon at Brigham and Women’s Hospital. He told me that I could certainly “watch and wait,” but he believed that in about three years I would begin having symptoms ranging from headaches to coordination problems. He didn’t push me at all to have the surgery…he was very prepared to do regular MRIs and to see how I’d do. I, however, was not. I knew that there were advantages to having the surgery sooner rather than later — I’m still relatively young, the tumor was still small, and it was not yet involved with a vein that was just a little too close to the site for comfort. The tumor had grown — it was almost certainly going to grow more. Scared as I was — and I was scared — I decided to have the surgery.

One of the toughest parts of my decision was the timing. I had committed to teaching two classes at Lasell College in the fall, including a Memoir and Personal Essay class that I was designing myself. I also had committed to mentor one senior through a directed study in Creative Nonfiction Writing, and another through a senior capstone project in Fiction Writing. I didn’t want to let the people who were counting on me down, and the doctors told me that I could wait four months to have the surgery without risking my health.

I scheduled the surgery for Dec. 8, which would mean I’d miss just one class session at the end of the semester. I’d then have six weeks to recover before the beginning of the winter/spring semester at the end of January. If everything went absolutely right, six weeks would be the time required to recover to a point where I could return to work. Still, some people take months to recover from a craniotomy, which was the procedure I’d be having. It’s not a pleasant procedure to describe, so I won’t go into it here. Suffice it to say, it’s scary. They have to open up your head and remove the tumor and then close your head back up again. A lot of things can go wrong, and even when everything goes right, your recovery can take longer than expected. One thing that almost always occurs is that you feel very, very tired for an extended period of time after the procedure.

For four months I lived with the knowledge that I needed brain surgery and couldn’t be sure what would happen. I didn’t tell many people what I was going through. I didn’t want to draw a lot of attention to my situation. I didn’t want people to worry, or to look at me with pity or fear. I needed to act normally in front of my friends and my students, and I was worried I wouldn’t be able to if I thought — or talked — too much about what was going on. I taught, I lived, I lay awake at night, and I waited. I read a book called Prepare for Surgery, Heal Faster by Peggy Huddleston and faithfully did the relaxation/positive visualization exercise on the accompanying CD to help ease my anxiety.

As for my writing? During those four months I was able to write just one 533-word piece.

On December 8 at 5:30 a.m. I walked into Brigham and Women’s Hospital in Boston carrying a small bag packed with basic necessities, and I put my life in the hands of my surgeon. The last thing I remember is getting into a bed in the pre-op area and hoping they would give me something quickly to help me relax. About eight hours later I woke up in the neurosurgery ICU with four IVs and a PICC line in my arms and feet and a 6-inch-long incision straight down the back of my head. I was alive. I was awake. And within minutes my husband leaned over the bed and gave me the news that my mother-in-law never had a chance to receive: it was a meningioma, they got it all, and it was benign.

There’s more to the story, but that’s enough for today. Almost three months later I am largely recovered (I’m still more tired than usual) and back at Lasell teaching classes. I will have a follow-up MRI soon to be sure everything is healing well, and I’ll have to be followed with MRIs for the rest of my life to be sure there is no recurrence. They think the chance of recurrence is small in my case and that there is plenty of reason to hope I will not have to deal with this again.

For a long time only my family and a few close friends knew about this latest health battle. I debated within myself about whether to ever share the news publicly on my blog. I needed time to deal with my situation privately. But now that more time has passed, I’m finding it’s hard to feel honest, as a creative nonfiction writer, if I’m leaving out a big piece of the truth about my life. And I feel I should do my small part to raise awareness about meningioma, for which treatments are currently limited. Some strides are being made in clinical trials, but as of now surgery, which can be risky, offers the only “cure” (and for many, surgery isn’t an option). Singer Sheryl Crow has a meningioma. Actor Scott Baio’s wife has been diagnosed with one, too. A group called “Meningioma Mommas,” founded by meningioma survivor Liz Holzemer, wife of major league baseball pitcher Mark Holzemer and author of Curveball: When Life Throws You a Brain Tumor, offers information and online support groups for patients, and raises money to fund research towards better treatments and a cure.

I am deeply grateful for all of the support I’ve received from those who knew about my situation for the last seven months. I am also grateful to still be here, living, breathing, teaching, and getting back…slowly but surely…to my writing. My guess is that I’ll be writing about this in my creative work in some form or another, but for now…it’s just nice to be back.

 

 

 

 

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16 thoughts on “So, I had brain surgery

  1. Heather

    Thanks for sharing! Your story is compelling. I can’t imagine the terrifying wait you had to endure. Glad to know you are recovering and will be writing more and more.

  2. Linda Sienkiewicz

    It’s incredible to think how much of medicine is based on odds. I’m so glad the news is good, Faye! It must have been like living your life in some kind of weird suspension until the surgery. What a strange coincidence that your mother-in-law had the same meningioma, and I can only imagine what things were going through your poor husband’s head. Again, I’m so glad to know you’re all right.

    1. Faye1 Post author

      That is what it felt like, Linda. A surreal existence for a while. Thank you for your good wishes.

  3. Jim K

    Just read this on Orange Line train to work. I imagine there’s w feeling of both catharsis and relief in so fully and widely sharing. Thanks Faye!

  4. Angela

    Faye, I’m so sorry you have had to go through this and so glad you had a good outcome.
    Sending healing thoughts your way — Angela

  5. Lynn Holman

    Dear Faye – It wasn’t till I read your blog that I realized how incredibly difficult it is to describe the meningioma experience in a short, sweet and to the point way. Particularly with the experience of losing your mother-in-law, those four months mud have been terrifying! You are such an inspiration!

  6. Angela Barton

    Hello Faye.
    Thank you for sharing your story; I’m sure your post will be a great support to someone who is or knows of someone, going through the same thing. My husband, Paul, had a meningioma removed 15 years ago and apart from now taking anti-epilepsy medication, he’s well and active. I’m glad you took 6 weeks to rest afterwards because Paul went back after 2 weeks – crazy! He paid the price later.
    I wrote about this experience in my first novel and it helped me as a family member to deal with the trauma. I think it will be very therapeutic for you to write about your operation in a future story. I bet this blog has helped you in some way, too.
    Wishing you the very best and sending hugs across the ether to you.
    Love Angela Barton xx

    1. Faye

      Hi Ange,

      I had no idea your husband had been through that! I’m so glad he’s fine now. Yes, at first you can think you are fine, but I was warned about that and to take it easy. I hope the price he paid for going back too soon wasn’t too dear! I’m sure that was difficult to handle for you as well. Thank you for letting me know.

      Hugs across the pond,
      Faye xx

  7. Lyndie Callan

    Faye, thank you so much for sharing this. It is honest and forthright, and written in a way that both grabs the reader and feels straightforward — not overly dramatic and not at all self-pitying. Wow. So glad that’s behind you and that you’re moving in the right direction.

  8. Fred Lunjevich (@Floony7)

    What a courageous story. I had no idea what a meningioma was until someone close to me had one diagnosed earlier this year. Unfortunately, theirs is in a tighter spot and could cause bad nerve damage if it continues to grow (it’s a Petrous tumour). Since then, I’ve been googling to find out as much as I can. Your story is the first actual patient report I’ve seen so am grateful you wrote this.

    1. Faye1 Post author

      I’m so sorry that someone close to you has received this diagnosis. If that person is on Facebook, I strongly recommend joining the group/page Meningioma Mommas (which is for men as well as women). There are many supportive participants in the group, and people post a lot of helpful information. I’m glad my story was helpful to you.