July 10, 2014

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.


  1. Thank you for your inspiration on dealing with your husband's health issue. We are going through something similar. My husband is going through testing to diagnose what could be a very serious mental health problem that will not just affect him, but us as well. And I'm in the process of trying to find the help I need to deal with this too. It's inspiring to hear other women support their spouses, know how to help/care/treat them, raise a family, and be strong.

    1. Sometimes you have no choice. You can believe the best, or you can not. And I know that's not helpful. You can't simply choose to believe something or not. And when you don't, the only answer I know is therapy. There is never a bad time for therapy.

      You and your family are in my thoughts. <3

  2. You have brought me to some love tears. I am so happy. I am so relieved and I just love you. xo

  3. I'm sure everything is going to be fine!! Thank you for such a heartwarming story!!

  4. Thanks for sharing! You are so very strong. I'm a firm believer in miracles and the power of prayer in conjunction with positive thinking. Sounds like you are too. Much love and light to you and your precious family!

  5. I had to scroll down to the bottom to see how it turned out and then go back up and read- I was so worried for you. Sending you so much love and prayers that everything does stay just fine. xo



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