Seizure Disorder – My Rules for Daily Life

First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)

Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.

Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.

To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them?  Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.

Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.

Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…

Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.

A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.

Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.

Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)

Note: if you’ve not yet seen or read The Princess Bride, do so immediately.

The Eyes Have It

I had my ‘annual’ eye exam yesterday. I say ‘annual’ because this is my first annual exam (I had one last year in September as well) in many, many years. Clearly my tumor wasn’t affecting my vision last year because my doctor declared my eyes healthy and remarked on how well I was doing fending off the inevitable post-40 need for reading glasses. A month later I was in the hospital having a craniotomy to remove a 3.5 cm malignant tumor.

I got glasses when I was in the 2nd grade. I remember going to the optometrist, having an exam, and being excited to pick out new glasses. I apparently wanted to be like my big brother SO much that I picked out glasses just like his – plastic, aviator style (i.e. hideous). Bless my mom for letting me pick the ones I wanted. It made the process so much more fun and it was a sure-fire way to get me to wear them. Plastic, aviator style glasses were not the most flattering look for a 7-year-old girl, but I loved them, just like I loved my big brother.

Getting glasses in the 70’s and 80’s meant some interesting looks – not only aviator frames, but GIANT round/squarish frames with curved bows that filled half of my face. I was stylin’ at the time, but I’ve hidden the pictures and will not share them with you – don’t even ask. Ok…I’ll think about it.  I got contacts when I was 16 and only had glasses as a back up. I don’t remember any of them because I wore them as little as possible.

Eventually, my eyes started to get irritated by contacts and I couldn’t wear them anymore.  Faced with a life with glasses again, I ended up getting Lasik (laser eye surgery). I remember waking up the day after surgery and seeing perfectly. I hadn’t woken up and seen clearly without glasses in 24 years at that point. It was pretty amazing.

Yesterday at my eye appointment, I was told my vision is starting to deteriorate a little more – because I’m 44, not because I have brain cancer. Not bad enough to do anything about it unless I’m feeling severe eye strain – which I’m not (yet).

So, here’s why I bring up my eyeballs…during the discussion with my optometrist, he explained that I’d likely need to do something within the next few years to help me see better. My options when that time comes are to get glasses (again) or go back in for Lasik. I sat there as he explained my future options and thought to myself, “In a ‘few’ years, I may not be alive to worry about it.” These are the thoughts that those of us with brain cancer have even on our most positive days, reminders of our mortality pop into our heads without warning. They’re fleeting and we’ll quickly go back to living our lives filled with hope and positive energy, but it’s another example of that damn beast hanging over us, watching…waiting.

When the time comes and my vision shows my age, I’ll be thrilled to wear glasses. I’d be happy wear those hideous (but totally cool in the 80’s) glasses of my youth. I’d even be willing to add in braces, headgear and acne. I’ll do it with pride, because I’ll be alive.

Notice the ratio of glasses to face area and the feeble attempt at Farrah feathers. Very 80's.

Notice the ratio of glasses to face area and the feeble attempt at Farrah feathers. Very 80’s.

You Are What You Eat

<Soapbox Alert>

I eat. Every day. Sometimes I eat more, sometimes I eat less. Sometimes I eat only because I know I have to. I usually enjoy eating. I usually enjoy cooking. I’m a pretty good cook, in fact – or so I’m told.

I’m vegan. That means I don’t eat anything that comes from an animal. I’ve been vegan for a long time – since I was 22. My family is vegan – my husband and my children. My mom is an occasional vegan. My brother-in-law is vegan. I have many vegan and vegetarian friends. The truth is that sometimes there’s some animal product in our food (which sounds really gross when I put it that way.) Occasionally, we get some egg in a baked good. Caseine can be tricky to avoid. They hide ingredients derived from animals by calling them something unrecognizable. We eat honey – we don’t believe in bee oppression. But we only eat one kind of honey unless we can’t avoid it. Heitkam’s Honey makes all other honey seem like high fructose corn syrup. Craig didn’t pay me to say that, it’s just the truth. You can find Craig and his honey at the San Jose Flea Market every weekend.

Cancer can be a very effective diet (as in weight loss) plan. I don’t have the kind of cancer that eats away at my body. I didn’t spend my 6 week non-spa treatment vomiting. I did start eating way less (except when I was on steroids). I stopped drinking alcohol (except for an occasional glass of wine). I have small snacks between my small meals. I do a better job of drinking water throughout the day. I read labels and I eat lots of fresh fruits and veggies. I’ve lost weight – enough to need new clothes. While I wasn’t overweight, it was weight I probably needed to lose, so now I’m where I really should have been before. I’m trying hard not to lose more. Even so, I would not recommend cancer as a way to lose weight. Ever. It’s extreme and unnecessary.

While I’d highly recommend the vegan diet, it takes work and practice and diligence. It’s the one my doctors were happy to hear I already practiced. It’s the one my kids’ pediatrician puts her overweight patients on to get them back on a healthy track. You can read story after story about people who have lost a lot of weight when they went vegan. But it’s not really about the meat or the cheese or the eggs. It’s about eating healthier. It’s about moderation. It’s about being informed. It’s about knowing about the food you put in your body and your family’s bodies each day. There is proof of a link between diet and health – if not cancer. It doesn’t seem like rocket science when you really think about it. What you eat determines whether you have the nutrients your body needs to grow and thrive and function as intended.

There seems to be cancer everywhere around me. Maybe it’s like when you learn about a new car and then all of a sudden you see that car EVERYWHERE…you probably saw it before, you’re just looking for them now. BUT, ask yourself – what effect does genetically modified produce, factory farmed meat (full of hormones and antibiotics), produce full of pesticides or highly processed ‘food’ have on your body.

My diet couldn’t have prevented my kind of cancer, but it could prevent other kinds. So, climbing on to my soapbox, I’d suggest:  Eat more whole foods, less processed. Eat more green, less beige. Eat more fruit, less sugar. Cut out the soda, buy a re-usable water bottle and keep it filled and at your side. Don’t feel like you have to clean your plates when you eat out – some American portions could feed an entire family. Learn about where your food comes from. Understand what Organic and GMO really mean. Learn about food additives like artificial food coloring. Read labels and ask yourself if you want to eat that thing you can’t pronounce. Ask yourself why some chemicals, additives, and GMO are banned in other countries and not in the US.

I’m not saying you should be vegan, it’s not for everyone. But maybe read, learn, and make even small changes. I know it’s not easy to change the way you eat, but it can be done and it just may save your life or the life of someone you love.

Some resources I’d recommend:

100 Days of Real Food

Food, Inc.

The Non-GMO Project

The Vegetarian Resource Group

Dr. Weil

Dr. Sears

(Climbing down off of my soapbox. Happy eating!)

It’s Not a Tumah. Oh Wait…Yes It Is.

I’ve mentioned that I had no obvious symptoms before that first seizure. But, there it was, a 3.5-4cm tumor in my left frontal lobe – pushing from one side of my brain into the other side. I have an aggressive form of brain cancer – so they guess that my tumor grew in less than a year. They don’t know what causes these tumors, but you can find all kinds of theories. And it’s only natural to wonder. It’s not something any of us should spend a huge (or even medium) amount of time on, because it’s already happened. If someone has built a time machine, THEN we should dig a little deeper. The only benefit of the digging and wondering (and it should probably be done by scientists, not me) is that if we know the cause, we can help others avoid this experience.

Here are some of the theories of cause that I’ve found.

1. PVC exposure. I DID make a marble maze for my son using PVC last summer…but it’s unlikely that cutting one 4 ft piece of PVC pipe into smaller sections would trigger brain cancer. I think they mean PROLONGED exposure. Not likely, then.

2. Tumor Progression. GBM 4 (Glioblastoma Multiforme) can start off as a lower grade tumor. Did I have a lower grade tumor first? And if I did, how long did I have it? Were there signs? What would have happened if there were and we got to it before all this serious business began? We’ll never know and it does no good to guess.  Ok, fine.

3. Virus. Some viruses have been loosely connected to Glioblastomas. Cytomegalovirus and SV40 – these are monkey viruses found in humans as well. I should say right now that I have NEVER owned nor fraternized with a monkey. Cytomegalovirus, from what I can tell from the big words used to describe it, is associated with chicken pox and mono. Both of which I had when I was little. It’s true. Both of them. The virus can remain latent and infects 50-80% of people in the US – I read that on the internet, so it must be true.  There may be some truth to this one, but if there’s a link, why is a GBM 4 so rare.  Hmmm….

4. Alcohol consumption. I do enjoy (or used to) the occasional cocktail and am, by marriage, obligated to know a little something about wine. I would hardly say that my alcohol consumption was excessive or a significant risk factor. If it IS a risk factor then I know any number of people who should be having brain scans right now. I don’t buy this one.

5. Ionizing radiation (x-rays, essentially). I started getting x-rays when I was about 11. I have scoliosis and it was just below the % of curvature where they would have put me in a brace. I don’t remember how regular these were, but I know I’ve had LOTS of x-rays over the years. Was this the cause?  In reality, probably not. But I always wondered why the techs went behind a protective wall if x-rays were so safe. Remember that radiation therapy also has a risk of triggering brain tumors – how’s that for irony?

6.  Diet. Well, I’m vegan (22 years) and I had already made a very conscious effort to cut out most of the processed food in my diet – which isn’t easy, by the way. I changed other aspects of  my diet about 2 years ago (maybe longer) to try and control my psoriasis (yeah, I got that too). I cut out nightshades (tomatoes, eggplant, peppers) and some other things – it worked really well for a while. But then it didn’t – such is psoriasis. Those things I stopped eating, interestingly enough are anti-angiogenic. Hmm…could that be it – have I inadvertently fed cancer cells lying in wait in my brain? Could I be doing ‘vegan’ wrong? Should I switch to a Raw diet? Do I need to be juicing? While any of these may be true, we just don’t know. Continuing to look at my diet can’t hurt.  There are a lot of great ideas and information out there about the relationship between diet and cancer. Some suggest diet INSTEAD of chemo. I don’t think I should risk that experimentation, but I’m certainly willing to add diet changes into the mix.

The lessons here are that we still don’t know a whole lot about cancer and the internet (Wikipedia, specifically) is largely an unreliable source of information, even if they use big words and sound convincing. We can spend a lot of time trying to guess or we can take a leap of faith and try some things JUST in case they might help – I’m talking about diet, of course. I’d say that it also helps to stay positive (except for the occasional bad day); surround yourself with people who build your hope with love, prayer, healing energy – they all help; believe that you’ll be legendary in your survival; and avoid the statistics you can find online since we all know that we can’t believe everything we read on the internet.