Epilepsy – We are Now Aware

I’ve joined a number of Facebook groups over the course of this year. You can track my year, and Mark’s health year, by them. In February, I joined one for people with a spouse with a chronic illness. In August, I joined one for people with cancer and their caregivers. Then another, for people with SNUC and their spouses. In October, I joined one for people with epilepsy and their loved ones. I have to say, with all the challenges people write about in all these groups, perhaps the group that expresses the greatest level of stress, anxiety, depression, fear, and hopelessness is the epilepsy group. So I’m sharing a post from there here, as a public service announcement to let yinz know that folks with seizures really, really struggle. They are often lonely and isolated. They’ve lost their jobs, their independence, and their sense of safety in their own bodies. November is epilepsy awareness month. Shout out to all those with seizures. You are fighting a hard battle. I hear you.

Galveston: Ocean, Seizures, and Family

It’s too early in the morning, or maybe too late at night. I’m awake, thinking of too many things. It’s been a good trip, with very little to show for it so far. In MD Anderson, Mark flew through a blur of appts with an ENT surgeon, oral oncologist, medical oncologist, and radiation oncologist. He was probed and tests: CT, PET, MRI, X-ray, nasal probe and blood work. We don’t have any results yet. The tumor board meets on Thursday night, and we’ll get a call after that. The docs will give us their prognosis and next steps for developing a treatment protocol. We’ll then have to decide if we uproot our lives and consider treatment at MD Anderson or some other major hospital, or stay put at home and get treatment there.

Mark’s appointments spanned two weeks, and so we took off on Friday night to head to Galveston. Mark was very tired. We stopped for lunch in the historic distric, went into a used bookstore, and then found our Airbnb, climbed the stairs to the second floor unit, and crashed for naps.

The next morning, Mark had another seizure. I keep my eye on him all the time, to the point of my own exhaustion, because I am afraid of so many things. He’ll be confused and disoriented. He’ll trip and fall. He’ll get lost. But I convinced myself to give myself a little break. Mark was asleep on the couch, and I propped open the door to the deck and sat outside in the sun to read. Within 10 minutes, I heard a crash. I ran in to find Mark flat on his back, unconscious on the hardwood floor. I grabbed my phone and called 911. “What’s your address, m’am?” the dispatcher calmly asked. “Can’t you trace my call from my phone?” I asked. I had no idea what the address of the house was, as I had just plugged it into GPS and followed the nice voice that led me here. “No, we can’t trace cell phones with that kind of accuracy.” Note to self. I had to leave Mark, run down the stairs and out to the sidewalk to look at the address on the house, and then run back upstairs.

That’s the third seizure in one week. These movie-scene kind of seizures are not my favorite. Accolades to the Galveston fire department and EMS, who got to us very quickly. I can report that the ER at University of Texas is more chill than our trauma hospital back home. Their neurologist said the CT scan looked okay, and added another med and sent us on our way. Mark slept most of the next day, and he was in a fairly confused state for a while. He doesn’t remember any of it. (I do. Again, not a fan.) He’s back to a more normal baseline now, thankfully.

Now we’re back in Houston at MD Anderson. Mark had one final appt today. It’s strange to be in the MD Anderson orbit. Everyone here has cancer, or is worried about someone who has cancer. It’s both a comfort somehow, and a little too much. We rode the hotel elevator four times yesterday, and each time a stranger made some small talk with a lot of (correct) assumptions. “When’s your call time tomorrow?” = I know one of you has cancer and you’re headed to the hospital tomorrow. Last Thursday night, we whooped it up (okay, they were really fun people) in the hotel bar with a couple from Louisiana who were back for an annual scan. The subtext to all conversations with everyone from Lyft drivers to hotel restaurant staff is I know you’re worried, I get it, I’ve been there, life is throwing a curve, let’s be kind to each other and try to make the best of today.

Speaking of making the best of today, my dear brother Scott and wife Karen and doggo Molly drove from Dallas to Galveston on Sunday to visit with us. A generous thing to do, as it’s 5 hours away and they were only with us for 24 hours. Even more generous in that Scott had emergency surgery on his leg on Friday morning after smooshing it in a motorcycle accident. (As they say, the motorcycle won.) Family. So great.

Will it be good to be home? Yes. Not restful week though. Mark has his gigantic 8 hour chemo day followed by two days of chemo at 3 hours each. Also being squeezed in there is a neuropsych appt. And of course, waiting to hear the MD Anderson news.

I’m going to make myself a cup of coffee.
Ever onward,

The South

Day 1 in Houston ends with a lovely time at the hotel bar with Cathy and Joe from Louisiana. Everyone here seems to be here for medical treatment, making it an odd club to be a part of. They are no exception. In between some wine and beer, we learned about gumbo and why Lafayette is the better place to go for Marti Gras and integration in the 60s and 70s and why Trump is their man. At some point, Joe snuck out for a cigar. We ended with a warm hug and Mark and I being added to their prayer list. Tomorrow, I think I will have the sausage gravy at the hospital cafeteria. Where, by the way, I saw a poster advertising their Bowel Management Class. The South. Here we are.

Not a fan of seizures

Home again home again jiggity-jig, Take 2: Mark had two tonic-clonic serious seizures this morning. I’ve never seen a grand mal seizure before. I can only describe it as it felt: like watching someone get electrocuted. One minute he was fine, the next minute he was on the kitchen floor, breathing in a strange and mechanical way, curled in the fetal position.

Next, the whole nine yards: freaked out wife, petrified kid, police, EMTs, hero-of-a-neighbor, sirens, weaving in and out of traffic on a high speed endless ambulance trip to the hospital. The ambulance driver telling me things would be okay, unconvincingly, as he cursed at drivers that were not getting out of his way, and as I listened to that strange mechanical breathing behind me.

We are back home now. Mark is asleep, drained from whatever his brain did today. CT scan looked okay, meaning there was nothing acute to treat. They added a second anti-seizure med to his long list of meds. Hopefully this adjustment will reduce the chance of more seizures. A long, long day that relative to the last couple months wasn’t technically that long. But so felt it.

Still headed for Houston Wednesday. The neurologist cleared him for travel. A wing and a prayer.