You haven’t heard from me for 12 weeks, and I am very glad to be back at the helm of WMG. But so much has happened since the last blog I wrote was published, I don’t quite know where to begin.
On that date—March 25, 2019—I spent the morning working from home on the Kristine Grayson website before checking in as an outpatient at the local hospital for a scheduled MRI.
But first, let me explain how we got to the MRI in the first place.
For what I now know is about two years, my health was in decline. I didn’t start to really notice until last fall when I began having problems communicating. I would be speaking and all of a sudden, I would stop being able to make words. Not for long. Just a minute or two. Still, it freaked me out. But it would pass, and like lots of other busy, successful women past 40, I brushed it off as just a sign that I was getting older. I had people counting on me in my personal, professional, and civic lives, and I wasn’t going to let a few bumps in the road slow me down. Just like I hadn’t let the joint issues and fatigue I’d been experiencing for at least a year slow me down.
Then, just as 2018 was drawing to a close, the weirdest thing happened. I was in a restaurant with my husband, mom, and stepfather, and my right hand suddenly went numb. The numbness slowly spread up my arm in an eight-inch block until it crossed my back and hit my spine and then it was gone. I’ve never felt anything like it, and it scared the hell out of me. But still, I brushed it off as another issue with my spine or tendons like so many issues I’ve had before. You do that when you’re a chronic pain sufferer, as I have been since the age of 16. You just suck it up and continue on.
And so I did. Until the next time it happened. Similar, but different. At this point, I realized I should go see my primary care physician to at least discuss what was going on and get an actual medical opinion. My fear was multiple sclerosis. It runs in my family.
It took a while to get the appointment, but by the time I did, I was ready. I’d been Googling symptoms (not recommended if you don’t know what you’re doing…you’ll be convinced you’re dying no matter what it is), and I had a list of things I couldn’t explain dating back about two years. That list might have saved my life.
My doctor used that list to fight with my insurance company to get the MRI approved. She suspected a brain tumor. I had ruled that out in my research because I wasn’t having seizures. At least not the kind I’d heard about, like grand mal seizures. But while she checked for a whole host of other possibilities, she wasn’t willing to drop the MRI. And my list helped her win that battle.
Thank goodness she did. (I would have paid for it out-of-pocket if they had, but it would have taken longer to schedule…time it turns out I didn’t have.)
So, on the Monday of Spring Break, I went in for my MRI. I asked my husband to drive me, which is weird because I am very independent and usually handle all of this stuff on my own. And there’s no reason you can’t drive after an MRI. Plus, the hospital is less than five miles from my house. But ask him I did. He must have sensed something, too, because he waited in the parking lot for me to text him that the test was over.
They did the test. It didn’t take as long as I thought it would. And when the tech pulled me out of the machine, he asked me one question before my world tilted on its axis: How are you feeling? Fine, I said.
Then, he told me that the doctor had been reading my scans in real time and had asked the tech to walk me straight to the ER to be admitted. I didn’t even have a chance to change out of the scrubs they had me wear for the test. I stopped only long enough to text my husband. This is the message he received: “Being admitted to ER. Please come.”
He was there almost instantly. I can only imagine what that text did to him.
Upon being admitted to the ER, I got the news from an ER doc I’ve known for a long time (it’s a small town): I had a very large tumor (4.8 cm by 4.5 cm) on the left side of my brain. They suspected benign meningioma, but I would need to be transferred to a hospital in the Valley. I would need to have a craniotomy within days to remove the tumor. The size made it very serious. And when they did the neuro exam in the ER, I realized for the first time how much I had been ignoring. The doctor asked me to hop on one foot—and I couldn’t remember how to do that.
I was transferred to the ICU to await a bed at OHSU (my preferred hospital as it has a dedicated brain center and renowned neurology department). Thankfully, it was also in-network.
On Tuesday, I was admitted to OHSU in Portland. Once there, I found out that the scariest symptoms I’d been having were actually partial (focal) seizures—the very thing I thought I wasn’t having, which made me rule out brain tumor. The weird numbness thing: a partial (meaning only affecting one area of the brain…you are very aware of what’s happening to you) seizure called a Jacksonian march seizure. The speech issues were another type of seizure. I was started on anticonvulsants immediately.
I spent Wednesday getting my affairs in order, just in case. Thursday, I underwent an angiogram to see if they could preempt significant blood loss during the craniotomy (they couldn’t, as it turns out).
Friday, March 29, the neurosurgeon cut open my skull and removed the tumor. On Monday, April 1, they sent me home to continue the long recovery process.
I have so much more to say about that, but not now. This is already longer than the longest blog I’d written to date.
But I will say this much more: one of the biggest challenges I’ve faced in my recovery is regaining the use of my right hand (which I couldn’t move or feel at all after the surgery). Because of the brain trauma, I was on head injury protocol for the first six weeks of recovery. My screen time was very limited. I couldn’t watch TV for weeks. Even reading was hard. I couldn’t handle noise or movement or even talking on the phone.
I still have months of recovery ahead of me, but I’m at least 80 percent back now. I’m typing this blog at close to my pre-tumor speed, so that tells you something about the progress I’ve made toward regaining that right hand function. I’m walking more than I have in two years. My brain is still not where it once was, but that was expected to be the slowest of all to recover.
I still can’t drive. I had two seizures after my surgery that required an increase of my anticonvulsants. I will be on those for at least one more month and perhaps for the rest of my life. We don’t know yet.
And my tumor wasn’t benign, but it wasn’t cancer either, thankfully. It was atypical, a form of WHO Grade II meningioma called clear cell, which is more common in people my age but is very rare overall, and much more aggressive than other types, so it has a much higher chance of regrowing, even with a gross total resection, as I had. So, I will have two more MRIs this year and at least one per year for the rest of my life. I might need to have another craniotomy in the future. I might need to have radiation at that point as well. Or it might never recur. I’m going to focus my energy on the latter.
So, I’m back in the saddle again. And I’m so very glad to be here.
I didn’t stop working completely during my recovery, of course, because I’m me (and yes, I was working from my hospital bed in the days leading up to the surgery). But while the amazing WMG staff was taking on the yeoman’s task of doing my job on top of theirs, I helped where I could.
My most significant contribution was to the Grayson novels and omnibuses we had scheduled for release before I abruptly left for my tour in tumorville. I had already set the design template for the new Grayson look, so I was able to continue working on those covers during my recovery. It was very helpful for my mental state to feel like I could still contribute something. And while I believed I had found the art for the newest Grayson novel, Hidden Charm, I felt like I should read at least some of the book to make sure.
Before I knew it, I had read the whole thing. And reading was still hard. So, if I read it that fast post-brain surgery, you will understand how incredibly good it is.
Here’s the synopsis:
When a Charming Prince named Sonny rescues Rapunzel from her tower prison, she rides off with him and gets on with her life—her real life in the Greater World. They set up a home in Los Angeles, and she begins to discover the strength of her magic.
But when Sonny disappears, Rapunzel needs help finding him.
Enter Henry, the Frog Prince, who works the front desk of the Archetype Place. Only Henry can help Rapunzel find her husband because of the vast power it took to conquer Sonny. But Henry wants nothing to do with Rapunzel or her problem. He fights enough of his own.
A typically fun Grayson romp through the world of magic and love.
Hidden Charm is available for preorder now, and it officially releases Tuesday, June 18. Click here for more details.
Also releasing on June 18, as Gwyneth mentioned in this blog last week, is the fourth omnibus of the Grayson novels, this one containing Wickedly Charming, Charming Blue, and Hidden Charm. That’s the way to go if you like ebooks and want to read (or reread) the other two novels that came before this latest one. Click here for more details.
Finally, I want to thank everyone for their patience and support during this trying time. We’re a small staff with big jobs, so when one of us goes down, it’s a big impact. And I received so many cards and emails at home while I was recovering wishing me well that what I mostly felt during my recovery, and still feel today, is grateful. I am a very lucky woman, and I’m thankful that my story, too, had a happy ending.
Allyson Longueira is publisher of WMG Publishing. She is an award-winning writer, editor and designer, working mother, and brain tumor survivor.