Just Fine

Three days before he asked me to marry him

I tell people M was diagnosed with cancer sixteen hours after we got engaged.

That's not really true. It was sixteen hours after we got engaged that he had the seizure that brought him to the ER, and from there to the CT scans, and from there to the MRI, and from there to the surgery that diagnosed him with brain cancer. The whole process from seizure to diagnosis took almost exactly five days. But from the moment I got the call that he'd had a seizure, part of me knew.

I'd been watching his symptoms develop slowly for the better part of a year. They were things you'd almost never notice. Things even his doctor, doing a neurological exam, didn't find in any way significant. But they were significant to him, in ways even he didn't really catch.

Eight months before the seizure: "I keep tweaking my left ankle when I run at night. I never used to do that. Isn't that weird?"
Six months before the seizure: "I used to play this song better, but the pick just won't stay in my fingers. Maybe I forgot how to play the guitar?"
Three months before the seizure: "I don't remember being so bad at base running! My left leg just won't quite do what I tell it to. I must really be out of practice."
And then, when I'd finally persuaded him to ask a doctor about it: "He thinks I probably just have a pinched nerve or something. I'll stretch more, and it'll be fine."

That was about two months before the seizure.

July is a big month for us. On July 4th, we got engaged. It was the one day we truly got to celebrated being engaged, even though it happened late in the evening.

On July 5th, M had his seizure. And we stopped celebrating being engaged and started going into emotional lockdown. Alternating denial and fear and a lot of figuring out how to fit both sets of our parents, who had never met, into our home so they could stay for the surgery.

And on July 10th, seven years ago today, the surgery. The endless awful hours of it, and then learning that M had stage four astrocytoma, an aggressive glioma that would likely take his life within two years.

It's much more comfortable to remember the other anniversaries.

May 23rd is a good one.

Yesterday, M had another MRI. As you may recall from a month ago, his last MRI wasn't exactly ideal. Instead of waiting our usual six months for a repeat, the doctor asked him back in eight weeks.

And if your math skills are functional, you'll note I said that he had another MRI yesterday. So what happened, right? Why did he have one in four weeks instead of eight?

Seizures. Seizures like he hasn't had in five years. An MRI that showed something and then seizures. Plural.

So his doctor wanted him back sooner, in case whatever that something was had started growing at an alarming pace. Or in case the last set of images had missed something. Or in case of any number of things, because after five years of having no seizures beyond the occasional micro focal seizure, that's alarming.

Here's the thing about seizures- everybody has what's called a "threshold." There's a point when the different things that can cause seizures- heat, medication, pressure, infection, blood sugar. fatigue- do. For everyone. People who get them regularly simply have a different balance of pressures already affecting their brains. And there are medications to manage them.

So yesterday we went back to the hospital to spend six hours getting MRIs and talking to the doctor.

And I'd like to say a very special couple of words to M's neurologist, who I love, and respect, and like personally as a human being.

WHAT THE HELL IS WRONG WITH YOU???? Seriously- you sent in two med students to do the most in-depth neurological exam he's had in SIX YEARS while we sit around reading everything and anything into it? Were you getting a new baseline? Were you trying to teach them how brain tumors manifest? Were they supposed to be learning how to keep a straight face when they might be looking for signs of brain cancer?

M looked at the fourth year med student, who administered the rigorous tests while the first year student studied her. And I studied the first year student. What the hell does she know? What is going on? What the fuck is going on????

And then, finally, our beloved neurooncologist returned.

M's new scans were identical to the last. They were, to use the same word we've been hearing for six years, stable.

Bald from chemo and radiation, but totally handsome that way

You see, when M was diagnosed with an inoperable stage four brain cancer, we did everything the medical team knew how to do. And more. We did everything. And what they told us then was this:

This kind of brain cancer is never cured. You'll never be in remission. You'll never be all better. The best we can hope for is that nothing changes.

Because he could live a perfectly normal life with the symptoms he had. Because if there's a stable tumor in his brain, it's not actively hurting him. It's not growing. It's not killing him. It's not doing anything. It is stable.

But then, miracle of miracles, his scans weren't really stable. Instead, they got better. His neurooncologies, not the one he has now, but his first, beamed with joy and pride and accomplishment every time he saw a scan.

They weren't stable, they were improving. When you looked scan to scan, you couldn't see a difference. But when you looked over the course of years, they were better. M's tumors were continuing to die, or shrink, or do something that made them less visible on MRIs. And that was unprecedented. It was spectacular. It was beyond all hope.

Which brings us to now.

Now, for the last several scans, things had appeared identical. No change from scan to scan. But, as of last month, there is something. A tiny, minuscule shift that when viewed over years instead of months, shows those vague areas that used to be solid white in the MRIs becoming a little bit cloudier again.

So what the hell does that mean?

It could mean any number of things. It could be that scar tissue is starting to develop around the dead tumor. It could mean that yes, the tumor's not dead, and it's starting to recover from being irradiated and poisoned. It could mean nothing at all.

Because at this rate of change? Everything is still stable. Just in case, we're getting scans every three months instead of every six. That's something we can definitely live with.

M and M on the beach to watch our 6th 4th of July fireworks since getting engaged

And the seizures?

Turns out the medication M takes to balance the side effects from his anti-seizure meds... lower your seizure threshold. Other things that lower your seizure threshold? Stress. Lack of sleep. Anxiety.

Three things he's had in spades since last month, when his doctor saw something and we started wondering if maybe it was the sort of something we've tried not to think about for seven years.

So he's going off that medication that might have contributed to seizures, raising his dose of anti-seizure meds, and focusing on getting some decent sleep. Which is a much easier thing to do now that we know he's still stable.

And as I continued running through scenarios in my head of what we would do if M needed brain surgery in another couple years, or when it would likely be, or what it means that the area is still changing, albeit at a ridiculously slow pace, it hit me.

This? This is the opposite of how we survived.

The way we got through brain cancer when it hit us was pure and simple- confidence. We never doubted. Yes, the medicine was essential. Yes, without the arsenic trial this would have been a different story. But what kept us going through all that? Confidence.

We never hesitated. I told M what I told everything else. "You're going to beat this. You're going to be just fine. You're going to kick it's ass, and then it will be history."

I still believe that. I need to stop preparing for alternative scenarios. There are no alternative scenarios.

So what if, medically, nobody can say that M is "cured?" So what if his "stability" is no longer the unprecedented improvement of years past?

He's fine, and it's time to stop worrying. Time for me to stop worrying, and time for everyone else to stop as well. The worry hurts. It brings doubts. And with doubts come excuses.

The only thing changing from here on out is that M needs to make his health a higher priority. He needs to make the time to get to the gym, he needs to eat better, he needs to treat his body like it's the miraculous POA it is.

M's stable, and that's all we really need to know.

The whole fam-damily

I'm going to keep my eyes open for those other signs. For new symptoms he might not register but that I never miss. I'm going to keep logging events in the binder because that's important to do, and I'm going to keep asking questions when we see his neurooncologist.

Who gives a fuck if you're "never cured" when you have stage four astrocytoma? Who the fuck knows anyway?

M's as cured as it gets.

So no more worrying. No more doubting. No more stress.

When the anxiety comes creeping back, I'm going to tell it what I've always told it, and then leave it behind.

He's just fine.

Epic Family Fun at Raging Waves Waterpark #WelcomeToSummer

The SuperMommy Family at Raging Waves Waterpark

This is a sponsored post! Raging Waves gave me a free pass to take my family, it's true, but all of the opinions/ (and the majority of the photographs) are my own.

The weekend before Independence Day, my family were graciously invited to spend a perfect July day at Raging Waves Waterpark, in Yorkville, IL.

It's about a forty five minute drive from Chicago proper, which is a long way to go for brunch, but completely reasonable for an all day excursion to one of the best sets of waterslides I've ever laid eyes on.

I'm not just saying that- I've seen a lot of waterslides. We've done the Wisconsin Dells on many occasions, and growing up in Michigan I made many day trips to Sandusky, OH to gets soaked at Cedar Point. And let me tell you, when it comes to waterslides, Raging Waves has them beat.

That said, I only got to watch for the most part. Going to a waterpark is a very different kind of adventure when you've got three kids under five in tow. You don't have the luxury of climbing up half a dozen flights of stairs, because there are three small people either too short or too distracted to handle the wait. So for the most part, the family stuck closer to the ground.

Our first stop was Kookaburra Kreek- the lazy river. This one was delightful- a full quarter mile of peaceful floating, with excellent views of the rest of the park. What's more, Raging Waves has higher water safety standards than most places when it comes to their lazy river. There was always a lifeguard in sight during our float down the river, which was a good thing because I worried that, where I was floating in my tube, if RH somehow slipped from my grip and went into the water, I might have trouble getting to her. But the life guards all around saw us, and I could tell they were keeping a vigilant eye on everyone as we drifted downstream. So from the cool comfort of Kookaburra Kreek, we planned our next steps. Our next step was the Kangaroo Falls- a kid's play area.

This place was AMAZING. at first glance, I was a little worried. My two four year olds freak out when their faces get wet, and they have height related anxieties, and general little-kids-who-don't-spend-much-time-playing-with-random-other-children nerves. But they were FEARLESS! They both ran right up the stairs to the biggest slides, and slid back down again. It was unbelievably adorable and so nice that they felt comfortable and confident enough to go it alone, without an adult.

I was totally comfortable letting them go it alone too, because the Kangaroo Falls structure is almost completely surrounded by fencing. They'd have to work at it to get lost, and I felt safe paying almost no attention to them as I stayed close to the littlest little.

RH had only turned two a whopping ten days before our Raging Waves adventure, and although that kid LOVES the water, she's not a fan of being surprised by it. One trip halfway up the stairs, and the giant bucket of water slowly filling up at the top tipped. We were both doused, and RH lost her cool completely.

Lucky for us, down the stairs there were plenty of other watery distractions. She played with a bubbling fountain for about half an hour while her sisters did laps up and down the slides.

And keep in mind- this is just Kangaroo Falls!

Once everyone was completely soaked, just the slightest bit sunburnt, and starting to lose interest in staying in sight of each other, we headed over to one of the lunch spots we'd seen on our lazy river ride.

I can't believe how big they are!

Now, we are a tricky crowd to feed. First there's the fact that four out of our party of six (we have a loaner teenager for the summer) are vegetarians. Then there's that two of the three vegetarian children are picky eaters, and the third is fairly lactose intolerant. And last of all, our loaner teen. That kid doesn't eat ANYTHING. Over a whole summer and now another month, I've learned the things she'll eat and I can count them off without running out of fingers. SHE DOESN'T LIKE NUTELLA FOR GOD'S SAKE!

But I digress.

It took some doing. There was much confusion in the snack shack, and many hangry words were shared between my children. But when it was done, everybody ate, and EVERYBODY was happy. That said, if you also have picky kids with dietary issues, you may want to bring your own food. There is a no-outside-food policy, but the owners made it clear they're happy to make exceptions for kids who need it. Next time, I may bring a sack of apple slices and grapes and rice cakes, just to smooth things over.

As for me? I truly enjoyed my grilled veggie wrap. It's part and parcel of being a vegetarian- you assume when you get a "fast food" type meal that a) it's not going to be very good, and b) it's going to take forever because they never actually have to make them. My grilled veggie wrap took a long time, but that was because they were actually grilling veggies to order. As you can imagine, the resulting sandwich was fabulous.

And M's burger was most certainly to his liking.

Sadly, the moment we placed our order, we realized the high dive show was starting. We ate, now watching the clock, determined not to miss the next one.

At Raging Waves, there are high dive shows throughout the day. They're a whole production- a story about pirates and pineapples and whatnot, with an old fashioned display of spectacular diving. You can see the performers climbing up the mast to the high dive from nearly everywhere in the park- it's that high! The whole thing is pretty sensational.

After lunch, the kids wanted to down Kookaburra Kreek again. And from the lazy river, we heard the announcement of the next (and last) high dive show of the day. The kids decided they'd rather head to Koala Kove- the wading pool adjacent to Kangaroo Falls. As we walked to Kangaroo Falls, we stopped to watch riders going down the Boomerang. The girls were FASCINATED, and definitely wanted to go. The only problem was, they were too short to go it alone, and while M and I could have taken them, M was a little busy being a place for a completely pooped RH to rest.

So on to Koala Kove it was.

Remarkably, the big girls were more frightened of the slides at Koala Kove. Unlike at Kangaroo Falls, the waterslides simply dumped them into the pool, and that made them nervous. So M took the kids back to Kangaroo Falls again and I stayed at Koala Kove with RH.

I don't know if I've ever seen a happier kid in my life. She kept bouncing and bouncing in the water, squealing with laughter and screaming, as she jumped again and again," TO OUTER SPACE!!!!"

With a gaggle of rapidly fading four year olds and a manically exhausted toddler, we decided to call it a day an hour before closing time.

Every day since, it's the same routine over breakfast.

"Can we go to Raging Waves today?"

"Can we go to the waterpark now?"

"WATERPARK! WATERPARK! WATERSLIDE! PRETTY PREEZE!"

And while I keep saying, "Not today, kids," the good news is WE CAN! And so can you! There are always tickets on sale, particularly for a weekday trip. You can save a bundle when you get them at Costco (which means when we go to Costco the kids see the picture of the waterslide and start screaming, "RAGING WAVES! CAN WE GO????"), and there are regular events that let parents or kids in for free or reduced prices. On Father's Day, dads got in free. And since they weren't open yet on Mother's Day (they're a Memorial Day to Labor Day operation), they're hosting a Mother's Appreciation day next month to let moms in for free too.

We will DEFINITELY be back. No doubt. And if you're in the Chicago region (or the NW Indiana region- let's be realistic, where I live on the south side is barely Illinois), or southern Wisconsin, or even the near Minnesota area, it's worth the trip. If you're spending the day, I highly recommend renting one of the cabanas- they're tents with refrigerators, and shaded chairs and tables. You can reserve them in advance, and use them as a home base if you're with a crowd. That is most certainly in our plans.

There's so much we didn't get to do. We still haven't been to the wave pool, which looks epic. We still haven't explored the labyrinth of enormous slides to our satisfaction, and we STILL haven't seen that whole high dive show!!! You can bet we'll be back.