Bumps, Divots, and The Wasting

We paid a visit to the most excellent Dr. Dodd today for my 6 month post-surgery check up. It’s really been 7 months, but it served the same purpose.

He agrees that my MRI looked great. As if hearing it from the neuro-oncologist wasn’t enough, it’s nice to know that 2 brilliant brain specialists agree. It was a pretty unremarkable visit since I’m doing so well at the moment and my primary care is oncology related, but it’s nice to see the man who saved my life and my brain function and tell him ‘Thank You’ once again. With any luck, I won’t ever have to see him (or any other neuro-surgeon) again.

We discussed the bumps and divots along my scar and the ‘dent’ in my left temple. These things don’t really concern me, I’m just curious to know what’s going on. They’ve become more obvious in recent months – perhaps as I’ve lost more weight. It’s funny that the first assumption made by the resident was that I was worried about how I looked and she immediately started offering cosmetic surgery options. I’m not entirely unconscious of my looks, but these things are SO minor compared to what some people go through after brain surgery. I’m proud of my brain battle scars and have hair that covers it all up if needed. But I was seriously just curious to know what was going on under my skin.

The bumps are caused by the titanium plates they screwed into my skull to cover the initial holes they drilled to get the saw in to cut a piece of my skull out to get to my brain and tumor (grammar police, I ask for a pass on that one please). Those plates look like throwing stars and apparently may be purple or pink. They do NOT give me super powers or set off metal detectors. The resident didn’t know why they come in pretty colors since no one can see them when it’s all said and done. My guess is that they help to make it easy for surgeons/nurses to identify different sized plates in the operating room.

The divots are caused by the gaps in my skull that remain after they replace that piece they removed. These are fairly small gaps so before you ask (you know who you are) NO, I do NOT have new Fontanelles.

The dent was identified as ‘the wasting.’ Now, I don’t know about you, but that conjures up an image of the effects of extreme illness on a body. I’ve lost a fair amount of weight, but I don’t think anyone would say I look like I’m wasting away. BUT, anyway, the dent is caused because the facial muscles that connect my skull to my jaw had to be cut during surgery. They reconnect it all as best they can, but some of those muscles essentially atrophy – i.e. waste away. Some patients have more ‘wasting’ than others. Apparently there are no exercises to rebuild these muscles – once lost, they shall never be returned to their former Arnold Schwarzenegger-like appearance. So, my hairstyle has to suffice to provide any necessary camouflage if desired.

So now you know.

Here are some flattering pictures that will perhaps make this post more interesting.

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This is me making a duck face for the camera before I had my stitches taken out. The ‘wasting’ isn’t showing yet because I’m still swollen from surgery.  

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You can see the ‘wasting’ in this photo…and perhaps even how little I actually care about it.

Numbskull and The Scar

More side effects:

Numbskull:  One of the strangest side effects of brain surgery has been having a numb scalp. An itchy numb scalp. When they shave your hair off and cut into your scalp to get to your skull, nerves are severed. Muscles in your scalp are severed.  Where that incision is made will change which muscles are cut, obviously. With a frontal lobe tumor, it required a 6 inch incision just behind my hairline. As a result, some muscles that I use to chew were impacted. This didn’t mean I couldn’t chew, but it felt like I’d also had some serious dental work done. Aside from the jaw pain, the rest of my scalp was numb…but itchy.  How does something that you can’t really feel itch so badly?  I have no idea.  Now, 5 months later, most of the feeling in my scalp is returning. While it’s improved, I still have some pain in my jaw. These are minor side effects of my experience and almost not worth mentioning — except that they’re noticeable to me every day.  As an aside, having a numb scalp can also be a side effect of Multiple Sclerosis which is another perplexing and unpredictable disease that needs research funding.   You can learn more and help support a good friend of ours who’s also experiencing a numb skull – just click here.
The Scar: As I mentioned, my scar is about 6 inches from just above my left ear to the top of my head – right behind my hairline. They shaved just enough hair off and when it all grows back, you should barely be able to see that scar. I had sutures, some people get staples. I think the surgeon chose sutures because they cause less scarring and because he’s kind and didn’t want me to have a scar that would terrify my children and their friends.  Maybe not, but I like to think that’s the case.
After a craniotomy, you also get strange bumps around the site where they’ve removed and replaced your skull after noodling around in your brain. These are generally small and unremarkable and will be hidden under my hair (assuming it does all grow back), but I have one bump that will never be covered by my hair. People probably won’t even notice it unless I point it out to someone…at which point it will become enormous in their minds and they won’t be able to stop staring at it, ever.  I also have a ‘line’ right above my left temple.  Essentially, the shape of my face has changed a little and my skull has a ridge or my temple has become a little more concave, like I’ve had part of my brain removed or something. I’ve lost weight through this process, and I think it’s made that change in my bone structure become more pronounced.  It’s like having well-defined cheek bones only it’s higher (as in nowhere near my cheekbone) and only on one side and it doesn’t make me more likely to become a super model.  I’ve just started to brave the world outside without hiding under a hat – my daughter reminds me to not tuck my hair behind my ear or wear my sunglasses on top of my head because it pulls my hair back. She tells me it looks ‘freaky.’  I tell her it’s a battle wound that I should wear proudly, just like my belly button (which was totally changed by my pregnancy with her).  It means I’m a survivor.

 

Cephalalgia? Who knew?

Headaches – I’ve had migraines ever since I hit puberty – hormones are a necessary, but unpleasant part of life. I’ve had headaches because I clench my teeth from stress. I’ve had headaches because I spent 14 years staring at a computer screen all day and eventually most nights. I’ve had headaches because of my allergies clogged up my sinuses. Headaches were a regular thing – some minor, some not. I’m no stranger to a headache. Did I have more leading up to my Brain Surprise? I honestly can’t say. BUT, I’ve had some doozies since.

For those of you unfamiliar with a craniotomy – it involves shaving some hair off (did I mention that my neurosurgeon was kind? He – or rather, one of his steady handed residents – shaved only what he needed to and what my other hair would largely cover post surgery.) They remove part of your skull to get in there to do what they need to do. They reattach that piece of skull with magic. Ok, it’s not magic, but that sounds way more exciting than wires and screws or whatever they actually used – some things deserve to be a mystery. They stitch you back up. Turns out – this hurts. Oh, and the part where they’ve cut part of your brain out? That hurts too.

About a week after surgery, I had a migraine. Of course, at the time we didn’t know that’s what was causing my head to feel like it would explode. I’d just had brain surgery and was on some delicious opiates. We called the doctor and he told us to increase the Percocet – to manage the ‘post-surgery headache’ I was experiencing. It got worse. So off we went to the Emergency Room. If you’ve just had brain surgery and the pain medicine isn’t working, they insist on ruling out a brain bleed, brain swelling, stroke – requiring lots of expensive tests and hours in the VERY bright, VERY loud ER.  When you’ve suffered from migraines most of your life, you feel really silly when the ER doctor and the neurosurgeons say – after hours in the ER and after a CT scan and after blood tests – ‘it’s a migraine.’ At that point, it becomes quite obvious. What we didn’t know was that opiates exacerbate a migraine. We were putting gasoline on a fire. The good thing about it being a migraine is the fact that a simple shot in the belly takes the pain away in under 5 minutes – like magic!

The next big one was during my 6 week chemorad (chemo+radiation). Going through radiation causes your brain to swell. When you consider for a moment what radiation is, this perhaps seems obvious. They asked me weekly ‘have you had any headaches?’ Every week I said, ‘no, not anything serious.’ This time we KNEW headaches from radiation were a possibility. So, why was it a surprise when I got a headache and it started to get serious? I have no idea. Another phone call to the doctor. He put me on steroids to control the swelling and the headache went away. Luckily I was able to taper off quickly as my brain shrunk back down to normal size.

I haven’t had anything more than a minor headache since.

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.