Thank You!

It’s hard to be an advocate. But it can be done. We can imagine an advocate as someone who travels around the country representing an organization or group of people with a cause. We can imagine an advocate as someone who supports children/families in a court setting when they need a little extra support. We can imagine an advocate who volunteers their time for a cause they feel passionately about. But, you can be an advocate simply by being there, supporting someone you care about, learning more than the surface details and telling people about what an organization is there for, walking in an awareness driven 5K, or making a donation to a non-profit of your choice.

Advocacy comes in various forms and each of you can be an advocate with as little or as much time as you wish or have to spend.

With that in mind, I’d like to send out a heart-felt Thank You! to all of you who donated, sent messages of encouragement and support, re-posted messages, helped us raise donations, told friends about the National Brain Tumor Association, and took the time to walk with us this last Saturday in the second annual Silicon Valley 5k.

Team EveryDayLeft Right Left had at least 34 walkers (I’m sure I’m missing someone in my count) and 2 dogs with us. We had family and friends who traveled across the state, across the bay and flew in from out-of-state for a special visit. There are so many more who weren’t able to join us in the walk, but were there in spirit. The support and love we receive every day as we go through this journey always amazes me and I can’t express how grateful we are to have such caring friends and family around us. Your support warms our hearts and fills us with hope.

Our team was the top fundraiser (again) and your donations will go to help develop programs to support families, raise awareness, and contribute to research for new treatments and hopefully a cure.

When I walked (and talked) last year, I hoped I would be alive to attend again this year. Well, I’m still here and look forward to attending next year!

With all of our hearts, we thank you!

Team EveryDayLeft Right Left walking for hope.

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Life With a Chronic Illness

I saw this video and felt I needed to share it. Morgan articulates what its like to live with a chronic illness in a way that illustrates the struggle, the loss, the prejudice, the heartbreak, the fear, and the hope of it all.

Morgan Grindstaff’s “What is Cystic Fibrosis?”

While Morgan is living with Cystic Fibrosis and not a brain tumor, his words resonate. We’re all hoping to survive.

Warning: there is some language that the more sensitive of you may find offensive.

Unchaperoned Meals

When I was young, my dad traveled on business trips regularly. My mom traveled less frequently, usually to Las Vegas to play some Black Jack or chat with the counterfeit characters lingering on the street corners about what they plan to do with their lives when they decide to climb out of their costumes in the dangerous heat. Ok, not really, but it’s a funny image thinking of my mom counseling strangers in Elmo-ish costumes. None the less, my mom DID travel…just not to Las Vegas. And everyone knows we played our Black Jack games at home.

These brief experiences with single parenting correlated with some culinary adventures.

When my dad was gone, tuna casserole was invariably made, complete with the potato chip topping. My dad HATED tuna casserole (or ‘hot dish’ if you prefer), so it was our opportunity to partake in this traditional midwestern delicacy.

When my mom was gone, we ventured into Spam and beans – previously only a camping cuisine. My dad and I quickly determined that Spam and beans tastes MUCH better 3 days or more into a backpacking trip and should be reserved only for those occasions.

When my husband travels, I venture boldly into child oriented meals. ‘Chick’n’ nuggets, macaroni & ‘cheese’, ‘vegan pigs’ in a blanket, plain noodles with margarine, grilled cheese sandwiches…you get the idea. We’ll also take the super lazy route of having cereal for dinner – enticingly called ‘Breakfast for Dinner! Yay!’ Last night, my children decided to make our evening meal. We had toaster waffles and ‘sausage.’ These meals aren’t particularly healthy, but I’m certain we’ll recover. We survived the tuna casserole and the Spam and beans after all.

What are your favorite culinary adventures when you are left unchaperoned?

Attack Of The Killer Cells!

It’s a little like the Body Snatchers. We look a lot like we used to, but something is off. We have begun fighting our own bodies. We are being attacked by killer cells! Some of those killer cells are defeated, some are just put into hibernation temporarily and they return again and again. Sometimes we win, sometimes we lose, but the fight goes on.

What helps with this fight is funding research, treatment options, and advocacy. The National Brain Tumor Society is one of those organizations that helps us with that fight. They are working hard every day to get us beyond ‘extended survival rates’ to ‘a cure’.

On September 27 I, my family, and many of our friends will be walking in the Silicon Valley Brain Tumor Walk. I invite you to join the team (EveryDayLeft Right Left – get it? Cuz it’s marching?) if you’re local, and donate to the team if you’re on this planet. Help us spread the word and do our part to raise awareness and offer some hope to those fighting brain tumors that someone is working toward a cure.

If you donate and would like to do it in honor of a loved one or friend, add it to the notes and we’ll carry signs on your behalf. We do this not only for ourselves but all of the other people in the world who have been impacted by brain tumors.

If you’d like to join the team, register and set a fundraising goal for yourself (or set your goal at whatever donation you make yourself.)

Team EveryDayLeft Right Left

Thank you!

 

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.

Ice Buckets for Sale

Ice buckets. Ice buckets everywhere.

I know the wildly popular Ice Bucket Challenge has raised a lot of money and some great awareness for the ALS Association. ALS is a disease involving the motor neurons in the brain and spinal cord. It is devastating in it’s ability to slowly take away a person’s ability to control their body until they ultimately die.

The Ice Bucket Challenge is sweeping the nation (if not beyond), causing multitudes to pour freezing water over their heads and then challenge others to do the same all in the name of ALS. Hopefully all of these people have gotten out their checkbooks once their shirts were dry and made a donation. While it’s mildly entertaining to watch your friends and favorite celebrities dump ice over their heads, eventually it ‘jumps the shark.’ The message about ALS and how horrible it is, not only to the person afflicted but to their families, begins to get lost in the freezing merriment and giggling. How closely are people REALLY paying attention to the disease this gimmick is trying to draw attention to? Eventually, they start talking about who looks good in a wet t-shirt instead of the reality of ALS.

ALS is definitely worthy of the donations it’s received during this phenomenon. It’s raised something around $23M and certainly some awareness, which is amazing. A bucket of ice over your head has very little, if any, relationship with ALS, but it worked. Despite the overwhelming success, it’s frustrating that people need a gimmick of any kind to make a donation to a worthy cause.

While we don’t aim to raise $23M, we are trying to do our part here in the Silicon Valley to raise funds, increase awareness, and get a little fresh air for those of us living with and fighting brain tumors and cancers. Join our team to walk on September 27 or make a donation to team EveryDayLeft Right Left to help us reach our own impressive fundraising total for the National Brain Tumor Society. Last year we raised nearly $23K and it would be amazing if we could get even close to that amount this year. No ice buckets required, but you can still challenge 3 others (and so on) to make a donation and/or join the team.

Oh, and if you have any incredible ideas for instant-viral-fundraising, let me know. No association to brain cancer necessary.

Want To Help?

Rant warning

We live in an age where women (and a few men) are famous just because they’re rich; where the ‘media’ follows them around just to get that one great photo; where ‘reality shows’ outnumber anything creative; where our sense of self-worth is based on our bank accounts or our ‘physical beauty'; where apathy outweighs empathy.

Why is it that ‘pop musicians’ get more attention for their bad decisions and are made millionaires because they perform songs written by other people? Why do media companies spend fortunes creating tv shows that follow families that have contributed little to better society or follow celebrity newlyweds as they navigate through their private relationships? Our priorities seem to have gotten jumbled along the way. Kindness and generosity seem to have waned. Our politicians seem to be working for the lobbyists rather than the people who elected them – afraid to make the hard decisions because it might risk their ability to be re-elected. Our obsession with celebrities has become more important than community engagement. Toddlers and Tiaras is a thing. Westboro ‘church’ selfishly pickets a family’s grief at a funeral for their loved one?! No one would consider that christian, it’s just plain hate.

Those people who are fighting for the less fortunate, for accountability of our largest corporations (Monsanto, for instance), for social programs that provide job training, safe havens for at-risk youth or victims of domestic violence, outreach programs to support the mentally ill or the aging populations seem to be fighting an unending uphill battle. Our schools are more focused on standardized testing than teaching life skills, problem solving abilities, recognizing individual interests and abilities. They remove enrichment programs like art and music which help provide the only experience and appreciation for the arts that some children will receive. Recess and physical education are being cut or dramatically reduced for the sake of classroom time when most children need to exercise and move their bodies to prepare their minds for learning and develop healthy habits.

Why are they called ‘Random acts of kindness’ rather than kindness just being a normal part of how we treat others in our communities?

Why aren’t we funding research to develop new treatment options to extend lives or cure diseases? Is it there that much apathy? Is it because it’s not important when it doesn’t impact you personally? Is it because these diseases kill so ‘few’ people that it’s not worth the money? Is it because it’s not profitable? Why are we and our families less important than the Kardashians or Honey Boo Boo?

This is the society that we live in. I think we can do better, how about you? Do you want to help improve our world? Helping others is a powerful, empowering, rewarding experience. So do something, anything to allow yourself that experience.

Pick a cause. Become an active participate. Become an advocate for change. Donate, fundraise to support an organization’s efforts. Talk about it, write about it, raise awareness. Volunteer your time. There are so many ways to help. Don’t make excuses for not participating in some way, any way.

Some options that are close to my heart (not a complete list):

National Brain Tumor Society

The Humane Society

Humane Farming Association

Sierra Club

National Psoriasis Foundation

National MS Society

 

Do something. Help. Give. Act.

Things I’m learning (While They’re) at Camp

Our children have left the building. They are spending a week at sleep away camp. Their first time. Our first time. Everyone was a little nervous, but at the same time looking forward to the week. The kids because they knew they were in for a fun-filled week. Us because we could play movies with bad language and explosions at whatever volume we wanted, starting said movies before 9pm. I occasionally worry about something happening with my brain while they’re gone, but then I force the thought out of my head, knowing full well that the chances are very low…but there’s still a chance.

So, while they’re gone, I’ve been learning a few things…

If your child insists on buying some Almond Dream Bites right before she leaves for a week of camp…don’t. Just don’t do it. Those little bites of deliciousness will disappear right before your eyes…into your mouth and down to your tummy.

If your children will be gone for a week at camp, get all of your chores done on the first couple days so you can play to your heart’s content afterward. You’ll feel a sense of accomplishment rather than feeling guilty and overwhelmed at the end of the week for not taking the opportunity to get it all done. And don’t try to get it all done, you deserve a little fun.

A date night involves going out, talking, reconnecting with your spouse, enjoying each other’s company. It does not mean sitting on the couch watching a movie with bad language and explosions before falling asleep 3/4 of the way through. That’s sad and points to old age, not a week off without children. For goodness sake, fall asleep in a movie theater or in the middle of a performance. If it’s not a date night feel free to change into your comfy clothes and pick a movie while you eat dinner on that couch, normally a forbidden activity.

For all of you women who think you’re wearing the right bra size and yet you curse its incessant poking and squeezing, get thee to Nordstrom immediately. Ask for a bra fitting and brace yourself for amazement. If you’ve already done so, good on ya’.  It’s totally worth the trip to hell…I mean…the mall. Your husband will be happy too since bra sizes are random and your new size may make you sound much more buxom – which, for some reason matters to some men. You don’t have to tell him that it’s all about comfort.

Have you recently gotten a book you’ve been anxiously awaiting, perhaps for months, years even? Has this book prompted you to make strange comments like, ‘I hope I live long enough to see this published and read it.” (After thinking about all of the other more important things you think about when someone tells you you’ve got brain cancer, of course.) I’d suggest putting off reading this book…you will get absolutely NOTHING done the rest of the week. Or…if you’re ready to commit, pick it up and read it cover to cover, only putting it down to shower (optional) or have a cat nap (not optional.) Once you’re done, know that there’s a book 9 coming out and set a goal of living until THAT one comes out 4 years from now. Then start the series over again.

The dog will still want a walk every day, completely oblivious to your limitless schedule. Even he must be enjoying a quiet household, right?

You will still think of your day and your to-do list in terms of when the kids will get out of school. Today, for instance, is an early release day and I must be ready to pick them up by 1:30. Then it will dawn on you that your time is not restricted by the school day. You’ll sit for a minute as you come to terms with this temporary freedom before you carry on with your afternoon’s activities.

As you go to bed each night you will find yourself wondering if they’re doing ok, if they’re having fun, if they’re having a hard time falling asleep, or if someone has fed them a plateful of bacon? Even while you’re enjoying your childless week, you can’t wait for them to come home and tell you all about their first week at sleep away camp.

Now if you’ll excuse me, there are some Almond Dream Bites waiting to be eaten.

Correction: My most sincere apologies to the Hain Celestial Group for incorrectly identifying your delicious little balls of almond ice cream covered in a crunchy layer of chocolate as a Tofutti product. While Tofutti makes a number of delicious fake ice cream products, nothing really compares to your addictive Almond Dream Bites. They are in fact, dreamy.

Friend With a Brain Tumor?

Do you have a friend with a brain tumor? Do you have friends who have friends with a brain tumor? Do you have a family member, perhaps a distant cousin with a brain tumor? How about some random acquaintance at work, does he/she have a brain tumor? Does a close family member have a brain tumor? Do you have a brain tumor?

Every body knows someone who has or had cancer of some kind in other parts of their bodies – there are really too many out there. But chances are you know someone who’s experienced living with a brain tumor – primary or secondary. You may have known someone who died from brain cancer. Maybe you just heard about someone who was diagnosed with a brain tumor, but you really don’t understand what that means.

When you start to look around and listen to the rumblings, you and everyone around you has been touched by brain tumors/cancer in some way.

The 120 different types of brain tumors are indiscriminate of age, sex, ethnicity, race. There are no known causes. There is no known cure. There are rarely severe symptoms to prompt CAT scans or MRIs to identify that there’s a brain tumor growing. The first symptoms for most are a seizure, motor control issues or speech difficulties. Not all tumors are cancerous, but they all impact us since they’re in the control center of our bodies. Some tumors start off benign and then grow into a malignant tumor that tries to devour your brain. Regardless, treatment options are very limited.

In the 18 months since my own diagnosis with a brain tumor/cancer, I’ve learned of far too many acquaintances or acquaintances of acquaintances that have also been diagnosed with a brain tumor or cancer. Is it that the numbers are increasing or is it like that car phenomenon – when you ‘never’ see a car until you have a conversation with someone about said car and then you see them EVERYWHERE.

Hopefully, it’s not an increase in cases. It is disconcerting though when all of these other cases start appearing before your eyes once your own life has been touched by brain tumors/cancer. Those people fighting with their brains have always been there, we just haven’t noticed. It’s enough to make you feel a level of guilt for not knowing, for not doing more to support them and their families. Now that you understand what a brain tumor or brain cancer is capable of doing to you and your family, you feel guilt for not supporting people you never knew existed before you became a member of this horrible, elite society.

As is often the case when someone you know is first diagnosed with cancer, you don’t know what to do to help. You may not know how to start a conversation. You’re afraid to ask. You make so, so many assumptions about what’s happening. Or perhaps you ignore it altogether because it terrifies you.  When you see them and they don’t look sick, maybe you’re relieved that they’re ‘cured’ and don’t need to address their experience.

Having gone through the bad days, the REALLY bad days, and have been lucky enough to have many good days, I’d offer a few tips (from my perspective) on how to interact with someone diagnosed with brain cancer:

1. We will designate a family member who understands what’s happening to provide updates to those people who need to know. This person will NOT be the patient, their primary caretaker (in my case, my husband) since they are already over their heads with shock, research, information overload and serious decision-making. They’re dealing with fear, terror, worry, anger and healing. Please do not try to ‘go around’ this designated family member. Respect our privacy as we process how are lives have changed dramatically and figure out what to do next.

2. If you want to help, offer to have the kids over for play dates (not therapy, PLAY), drop off food – this is NOT the time to try that new recipe by the way, help take care of the animals left at home, make sure the garden stays alive, drop off movies or magazines… Notice these are all things that do NOT involve short or long visits. Everyone is overwhelmed and exhausted – having to ‘entertain’ will just make that worse (and don’t say you don’t expect to be entertained – when someone comes into your home, you naturally feel like you need to be a good host.)

3. Try not to start every interaction with ‘How are you?’ Because, really, you know. We’ve just received devastating news and have likely gone through brain surgery and are facing months on chemo and radiation. How would YOU feel? I understand that it’s a natural question and its well-intentioned. But if it’s asked too many times, it begins to feel like you should just make a recording and hit PLAY each time it’s asked.

4. Help take care of my caretaker – he’s scared out of his mind too. He’s trying to be my advocate, make huge decisions, keep it together emotionally, take care of our children, and be my body-guard – trying to keep people away while we process what’s happening as a couple. Once things calm down a little, take him out for a beer, LISTEN to him, go for a hike to look at a beautiful view, remind him to take care of himself, ask him if he needs anything (or better yet, make some suggestions on how you can help), let him cry without judgement or attempts to placate and remind him to shower and brush his teeth.

5. Remember that just because I have cancer, I’m still me. I have not regressed in age – don’t treat me as if I’m all of a sudden a child again. Condescension or offering theories on why I may have gotten cancer or suggesting things I might want to do in terms of treatment doesn’t help. At all. Not one little bit. Respect my decisions about treatment, period and treat me like the adult I am.

6. My cancer is not about you. If I don’t want to talk to you or see you, don’t take it personally. If I ask you to leave after a short visit (which all visits should be), don’t take it personally. Don’t tell me how devastated you are about my cancer. Don’t ask me about my cancer every time you see me – take my cues and ask me about every day things and tell me about your every day things.

7. Read about brain tumors/cancer. Understand the difference between them. Educate yourself and don’t assume that it’s a death sentence. Don’t tell me about all of those who’ve lost their battles, give me hope with the positive stories. However, when I’m doing well, don’t assume I’m ‘cured’. There is no cure for brain cancer. Even if I have no sign of a tumor at the moment, it will likely come back at some point. Help me fight to make sure it’s a long, long time from now. Don’t tell me it’s all going to be ok, because it is NOT ok. It will never be ok. Don’t pity me or others in similar circumstances. No one did this to us. Understand that I’m fighting, we’re fighting every day of our lives. Know that we’re all hoping that one day there WILL be a cure. Know that we’re all fighting the odds to try to live as long as we possibly can. Pray, send positive energy, and hope along with us.

8. Don’t be afraid that I’ll have a seizure at any moment. I’m taking medicine to control/prevent my seizure disorder. But ask what you should do if I happen to have one.

9. Brain tumor/cancer patients need the support of family and friends. But no one can really know what they’re going through better than another brain tumor/cancer patient. Ask that person you know, or the person you know who knows someone if they’d be willing to talk to that newly diagnosed individual. 99.9% of the time, we’ll say yes. We know what its like. We can offer a willing and patient ear, without judgement. We can explain what they might expect. We can refer them to resources that will help them learn more. We can discuss clinical trials and what to ask the doctors/coordinators. We can share what our own experience has been on trials. But most importantly, we can reassure them that they’re not alone.

Support groups aren’t for everyone. General support groups often don’t provide the support that brain tumor/cancer patients need. Specific brain tumor/cancer support groups will likely be better. Either way, know that some people will find a support group helpful, some will not.

10. Understand how my brain tumor/cancer has changed me, understand that even if my tumor is on hiatus, I still have a brain injury thanks to the neurosurgeon cutting out a piece of my brain. The impacts might be obvious or invisible. For me, I have short-term memory loss, I will stammer, I will forget common words or references – or use the wrong words. Have patience and don’t complete my sentences for me. Don’t make me feel bad if I tell you something for the third time this week. On occasion, I have slight balance issues. I can’t take anti-histamines, so pollen is more evil than usual, requiring me to stay inside some days. Once a month, I will walk around with an ice pack on my leg. I have not lost my mind or received a strange, repetitive injury. I’ve received my vaccine injections and am extremely itchy and ice helps.

11. Donate to the cause to support research. We’ll be walking every year to raise money for National Brain Tumor Society. Help us raise money and awareness. Walk with us to show your support and possibly get a free t-shirt for joining Team Every Day Left.

Brain tumors aren’t as uncommon as you think if you listen to the rumblings.