Seizureversary

November 26, 2023, is our seizureversary — the one-year anniversary of Clint’s grand mal seizure. One minute we were minding our own business, watching The Sopranos, and the next we were heading to Seton in an ambulance. A week-long hospital stay and a biopsy later, we got the diagnosis: glioblastoma.

It felt like we were suddenly plucked from our everyday life and dropped into territory that was completely foreign and very terrifying. We didn’t just have to learn how to navigate our way forward on an unfamiliar road, we had to figure out where the road actually was and how to get to it. (Sometimes it even felt like we had to build the road.) We had to learn an entirely new language, figure out which doctors and medical experts to trust, which doctor’s recommendation to follow, what information was reliable…. The list of new things to learn and scary things to figure out seemed endless. And because glioblastoma is an aggressive tumor, we had to do all of it while not losing a second of time. It’s been a year.

We ultimately put together a medical team that we felt really good about and tapped into key resources provided by extraordinary nonprofits like the National Brain Tumor Society. We feel so lucky to have access to a long list of phenomenal health care professionals, and we’re incredibly grateful that Clint has great health insurance.

Clint has done remarkably well with all the therapies, treatments, and procedures. It seems like anything anyone throws at him he takes in stride and handles with his customary good cheer. He hasn’t really had any symptoms or side effects to speak of (knocking hard on wood over here), and we feel so, so lucky in that regard.

We also feel so fortunate to have gotten Clint enrolled in the CAR T cell trial! The medical trial team is composed of some of the smartest and most dedicated humans we’ve ever met. They work really, really hard every single day (and often into the night) to help people like us. God bless each and every one of them.

There’s a little coping strategy I employ when I’m feeling anxious or overwhelmed. I ask myself, “How would this day be different if Clint didn’t have this diagnosis?” Often, the answer is, other than having doctor appointments, it wouldn’t really be much different. He works, coaches basketball, and works out. We catch up with friends and family. True, managing our calendar takes a little more planning these days— especially during times when Clint isn’t driving. And I read more medical stuff and cook a lot more (and a lot more healthy) than I used to. But we also do a bunch of stuff we’ve always done, like travel, watch TV, read, listen to podcasts and see the grandkids (!). And, most importantly, we laugh a lot. Laughing has always been our super glue.

This road we’re now on has come with some surprises. We never, ever would have predicted that we would willingly visit Duke University, and that we would genuinely like the people we met there. (Although the Tar Heels will always be #1 in Clint’s heart — tied with the Longhorns, of course.) We never imagined that Clint would be almost vegetarian — and damn near vegan. We never thought Clint would completely eliminate sugar from his diet and not complain one single time. (Pour out a little Blizzard for him the next time you’re at Dairy Queen.) And I sure as heck never imagined that I would not partake of any adult libations for an entire year — and without even being pregnant! But if Clint can cheerfully forgo his favorite junk foods, I can give up wine and margaritas in solidarity. Love makes you do crazy things. Finally, we never imagined we would be the meditation and/or support group type. (Shout out to the NBTS third Sunday support group!) It’s hard to put into words how much these things mean to us. I guess people really can grow and change later in life.

We have so many amazing family members and friends — some of whom I gained from Clint and others he gained from me. I am so grateful to all of them for lifting us up during this past year. They’ve been there for us when we needed them; and they’ve been understanding when we needed privacy to process what we’re going through. They gave us grace when we overlooked a text or email or weren’t able to make it to something that we had hoped to attend. They fed and snuggled with our cats when we were in the hospital. They cooked us dinner, made us soup, and brought us JuiceLand. They kept me company when I needed a distraction. They walked with us — even driving to our house to walk around the neighborhood when we couldn’t make it to the trail. They sent us sweet cards and thoughtful, morale-boosting gifts. They checked in with us. Many came to visit from out of town — and for some, that meant traveling across the country. Their messages of love and support make us feel so close to them. We really couldn’t do it without them.

I looked through my phone to find the last photo I took of Clint before his seizure, and the first one I took after it. Those are the two photos I posted. While scrolling through the photos from this past year, I noticed how many photos like the “before” one I’ve taken in the after times. (So many shots of Dulce snuggled up with Clint!) These photos confirm what I’ve been feeling: In a year that has been radically different than any of the years before, much of our everyday life is somehow still the same. If there’s anything this past year has driven home, it’s how much we love our everyday life.

In the initial aftermath of Clint’s diagnosis, I needed privacy to process what was happening. I needed time to research (and cry) and think (and cry) and figure out a plan. We needed time together as a couple to try to make sense of our new reality. I largely stepped away from social media while I worked through all of this.

Thanks to everyone for understanding that, adjusting along with us, and continuing to be there for us. Heading into year two of life with a GBM diagnosis, I feel like I’ve regained my footing to a large extent. We’ve got this — and that’s largely because we’ve got this community.

TAGGED WITH: glioblastoma, #GBMDay

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.