Misty Watercolor Memories

Ah, the frontal lobe…memory, emotion, speech.  Let’s take a look at memory for a minute.

Everyone forgets things every day. Ever walk into a room and forget why you went in there?  Gone to the grocery store and realized the moment you got home that you forgot the one thing you really needed to buy? Forgot a birthday of a loved one? Forgot to pick your child up from practice? You know what I mean. Everyone forgets. Our lives are over-busy, over-scheduled and over-stimulated.

While I was recovering from surgery – idle time is not good for me – I was going back through the previous year and wondering…was that an unreasonable amount of forgetting? What about that? Now, that wasn’t normal forgetting, was it? I was looking hard and finding all kinds of examples of where my brain may not have been functioning ‘normally.’ Many people have told me when I’ve mentioned these examples that they experience the same kind of forgetful moments.  So, were they signs or was I just a regular ol’ over-worked, over-tired, over-stimulated human being?  I really don’t know.

Then, I have days that I straight up don’t remember. I have days or moments that I feel like I’ve forgotten, but then I get a prompt from my husband and I remember, mostly. I have moments that if I think hard enough about the context around the moment, I MAY remember. Then there are those strange, unnecessary memories that I pull out of my head without hesitation – like our phone number from 10 years ago or a name of an actor from some random show I watched twice in the ’80s.

The most unsettling, as you might imagine, are the days I don’t remember at all. The days in the hospital before surgery. Most of the days following surgery. Some moments during chemorad. The days after my second seizure. Having absolutely no memory of those days, having to be told what happened, what I said, what the doctors said is very strange and frustrating.  Luckily, I didn’t do or say anything during those times that I’d be embarrassed about – so it’s not really like drinking WAY too much and blacking out. I don’t like feeling out of control, which is why I’d never make a good drug user.  These days that I have no memory of are terrifying to me (and frankly to my husband and kids), but they’ve luckily been few. I’ve had people who love me there who can later remind me that it was all ok and I didn’t dance on the tables in my underpants trying to sing some MC Hammer.

The anti-seizure drug (Keppra), when my dosage was increased, made my memory worse. It’s a common side effect (not an uncommon one, like possible brain tumors from radiation treatment…for brain tumors.) I think it got better as I acclimated to the dosage. But, I find that sometimes my internal thoughts veer off from the words coming out of my mouth. Most of the time, I catch it and get back on course after explaining what I really meant to say (like when I told my husband that my sister-in-law really said TORNADO warning, not TOMATO warning), but sometimes I don’t. I used to be able to make lists in my head and remember them more than 5 minutes later. I’ve always been a list maker (and yes, I’ve sometimes written down ‘take shower’ just to have the satisfaction of crossing it off), but now I have to write it down immediately or I’ll forget. Even the simple things – do laundry, fill bird feeders, clean up that huge pile of papers sitting in the middle of the floor that you have to step over to get out the door (ok, maybe not that one). I used to be able to multi-task, now I can’t do more than one thing at a time if one of those tasks requires any level of concentration. I have to write things down to remember them most of the time. I’ll sometimes get an email or voicemail from a friend or family member and if I can’t respond immediately, I’ll forget to write/call back for days until I happen to stumble across it again (my apologies folks, but don’t take it as a sign that I’m ignoring you, I’ve just forgotten temporarily.) That’s not so bad in the grand scheme of things that could have happened to my memory. And I’m learning that maybe my expectations for myself are sometimes a little too high and looking for those examples of imperfect memory is probably a waste of my precious time.

Brain Surprise

On Oct. 7, 2012, I had a seizure – at a pumpkin patch – with my family and a friend and about 300 strangers. One minute I was watching our kids eat snow cones and the next minute I was waking up in an ambulance, confused. I was taken to the emergency room, where they stuck me with needles and ran tests – including a CT scan. I was told I had a tumor in my brain and was being transferred to Stanford Hospital immediately. More tests and scans and visits from various specialists and residents and medical students and nurses. Surgery was scheduled for October 10. It was all a blur – my husband tells me that we watched movies while we were waiting for Wednesday to come around.  I don’t remember. Memories are hard to make after a seizure and with a big mass in your brain. Surgery went remarkably well – I was lucky enough to have a brilliant surgeon with a startlingly good bedside manner. He believed he got 99.9% of the tumor, but couldn’t say 100% because it wasn’t encapsulated. We knew at that point it was cancer, we just didn’t know how bad. I had more tests, more scans, more below average hospital food – and went home on October 12. I was tired and my memory was sketchy, but I was feeling pretty good under the circumstances.

We went back for a follow-up and the first shoe was dropped. Lab tests had come back, confirming that 3+ cm mass in my brain was cancer: aGBM 4. The worst kind of brain tumor.  Aggressive and persistent – meaning it’s not a question of IF it will come back, it’s WHEN. The words I’ll never forget were spoken: We now know how you’re going to die, we just don’t know when. To all of my doctors’ credit, no one shared the grim statistics for people with a GBM 4. They told me that my age, the fact that I was symptom free (in retrospect, there may have been SOME symptoms, but it’s funny what you find when you start looking), the near 100% resection of the tumor, the Giant Cell variety, my overall health…essentially, I had a lot going for me. BUT, it was still time to put my affairs in order, spend time with my family, take that trip, etc.

In June of 2012, after 14 years, I started a year-long leave of absence from work to spend time with my kids (5 and 9), nurture my relationships and my soul (cook, knit, sew, garden), and recharge before I went back to the grindstone. I spent the summer doing just that and it was awesome.  The kids started school and I signed up to be room mom for my son’s kindergarten class. I had 4 months of stay-at-home-mom bliss before my brain surprise.

I have brain cancer. I’m a realist. I’m a planner. I’m a worrier (a what-if thinker, if you will). So…I’ve cried. I’ve panicked. I’ve spent some days not wanting to get out of bed. I’ve bought journals for my children so I can tell them things I might not be around to tell them later. I’ve appreciated my husband even more than I did before – for his ability to be my advocate, ask the questions I was too dazed to ask, to hold my hand, to keep visitors at bay when I couldn’t face anyone, for being my strength all while he was just as terrified as me. I’ve started to put my affairs in order – lawyers and all.

Since I have young children, I’ve also tried to maintain some semblance of normal. “I’m still mom” kind of stuff. The kids still have chores, they still have to follow the family rules, they still have lessons and practice. They still have play dates and birthday parties. They still get to be kids even if their mom has cancer. My mom and dad, my friends, their teachers, their friends have helped to make that happen. Especially during the six weeks of intense treatment and kitchen remodel – but that’s another story.

I am also an optimist – I know it’s a contradiction, but I’m complicated. Many people who have 3+cm GBM 4 tumors discovered in their brains are FAR worse off than me – they don’t live next to a world-class medical center with brilliant neurosurgeons (with excellent bedside manners) and top-notch neurooncologists; they have to FIGHT to get to one and then TRAVEL FAR for treatments; they don’t have family and friends who can and will drop everything to help; they have inoperable tumors, major side effects pre or post surgery; they don’t tolerate treatment or worse, the treatments create new health issues; their doctors tell them from the start what the grim statistics are – taking away whatever hope they would have been able to muster.

So here’s my optimism coming out: When I had my seizure, there was a nurse close by who knew what to do. My friend was there to take my kids and keep them calm and safe and allow my husband to be by my side. The emergency room doctor at the local hospital didn’t give me any medication that would have made my situation worse (it’s happened) AND she didn’t just send me home – she managed to get me transferred to Stanford and placed under the care of a brilliant neurosurgeon (did I mention his bedside manner?). I didn’t have to fight for or think about what treatment course to take for the mass in my brain – it was decided and done before I had time to think about it. I handled the surgery well and went home 2 days later. I recovered well and had minimal side effects from the surgery. I was already on leave from work, so I didn’t have to deal with taking a leave or worry about who would manage my job.  My family and friends are awesome. Of all the myriad of things that could have gone wrong – think: driving when I seized, further injury when I fell, inoperable tumor, unsuccessful surgery or side effects (they told me I’d swell and bruise severely – I didn’t), and so on….none of it happened.

I have brain cancer, and yet I feel very lucky. I am balancing that fine line between my realism and my optimism. Failure is not an option, but let’s prepare for the worst, just in case. I try to live without worrying about when the other shoe will drop, but it’s always there…looming.

This blog is about how I struggle to find that balance while I continue treatment to fight the beast in my brain and live my life as a mother, wife, friend and citizen of the world. It’s about how I spend every day left in my life – however long that is.