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.

 

 

 

 

The Benefits Of A Brain Tumor

First, let me assure you that I’ve not gone crazy. But I was talking to a few people about acquaintances who have had their primary cancer spread to other parts of their bodies (including their brains) and I started thinking about the finer qualities of having a primary brain tumor. Here are my top ten benefits of a brain tumor:

1. A primary brain tumor doesn’t spread. It only attacks the brain. It may come back time and time again, but it won’t move  to your lungs, liver, bones, etc… Other cancers may develop outside your brain, but it won’t be because of your brain tumor.

2. The chemotherapy for a primary brain tumor comes in the form of a pill. This means that there are no daily trips for hours of infusion therapy. You still feel like a truck has hit you, but you don’t need to leave the comfort of your own toilet AND you won’t lose your hair! Thank goodness for the blood-brain barrier, right?

3. Radiation treatment however, WILL cause you to lose your hair – giving you multiple opportunities to explain and make up wacky stories about the strange baldness in random places on your head. For instance, ‘My cat has a fondness for hair.’

4. With radiation treatment, you will receive a free mask. You can use it for your latest Super Hero costume!

5. Fear of needles? Hah! Not any more. You’ll now watch with interest as they struggle to find a vein that will cooperate. You’ll barely flinch as the dig around with that needle to find a clear path to your blood. You’ll be given an honorary certificate in phlebotomy.

6. You can use your craniotomy scar to freak the hell out of people. For instance, apply some fake blood before you head to the grocery store and act like you don’t notice. When someone asks if you’re ok, you can look straight into their eyes and say, ‘Yes, of course. Why do you ask?’

7. You can leverage people’s general lack of knowledge about brain tumors and shock them with the facts, watching them trying to process the immensity of the problem and desperately search for the ‘right’ thing to say. Tell them that THEY can do something to help by spreading the word and donate to National Brain Tumor Society.

8. You can live in constant suspense, like Clarice in Silence of the Lambs. Will she survive? Will someone come to save her, just in time? Will she put lotion on her skin? A monster is lurking and can strike at any moment. Fun!

9. Multiple experiences in an MRI machine will act like immersion therapy and cure you of any claustrophobia you may have had prior to getting a brain tumor. You’ll also develop incredible self-discipline, learning to keep your eyes closed for extended periods, fighting the urge to open them, just for a peek. You’ll also learn to make itches disappear right before your closed eyes!

10. You can point out to people the irony that radiation treatment for your brain tumor MAY cause brain tumors. Then laugh hysterically.

See? Having a brain tumor isn’t ALL that bad. However, I’d still dissuade you from getting one.

There really aren’t any benefits, but sometimes you need to laugh and appreciate the ridiculousness of the experience.

 

My Brain Lives To Fight Another Day!

It was MRI day today. The Radiology center I went to was new (to me.) It was like a spa – all shiny and new, with Japanese style sliding doors.

See? Fancy spa-like doors.

See? Fancy spa-like doors.

Other than that it was just like any other radiology center – no facials or mani/pedis. I had to ‘train’ a new (to me) nurse how to locate my teeny, tiny veins and reiterate a few times that it would require a pediatric needle – why do they never listen? It’s not my first time at the rodeo. Luckily she listened AND I successfully dissuaded her from sticking me in my forearm or hand.

IMG_5626

Some nurses believe the more hot packs, the better

Leading up to today’s string of appointments, I was anxious – as all brain cancer patients are when we know an MRI is coming up. I slept a little poorly. I was distracted. I tried to stifle my anxiety because if it was bad news there was nothing we could do about it, we’d have to just deal with it if afterward. My husband and I didn’t need to discuss our mutual anxiety. We knew it was there and talking about it would only make it worse. He occupied himself with an insanely busy work load. I occupied myself with a project to make costumes and props for a school play. I don’t do things half-assed, so it was a great distraction. It exercised my creative juices, which is always a good thing.

As an example of the anxiety, I devised this crazy idea while waiting for my follow up appointment with my NO. But first, I know there are people out there who have to wait for a day or more to hear the results from their doctor – I don’t know how you can stand that wait. I know I’m lucky to only have to wait an hour to hear results, I’m sorry that anyone else would have to wait any longer than that.

On to my crazy idea…I convinced myself that IF my doctor came in the exam room BEFORE the nurse and the clinical coordinator for my vaccine trial, it would be bad news. IF the nurse came in first, it’s all good. While you laugh at me, there is some logic to this idea. I can’t continue in the trial if my tumor comes back, so what’s the point of all the neuro tests and trial questionnaires if its back? So, here’s what happened…the nurse (who is awesome) came in and after our pleasantries said, ‘First thing, I haven’t seen the results.’ Ok, hole number one in my theory. She completed the standard set of neuro tests and then went to tell my doctor I was ready – this happens every time…nothing new at this point. But THEN, the nurse, clinical coordinators AND my doctor all come in at once – this NEVER happens. OH CRAP! Here it comes! It’s back! The other shoe is about to fall…and so on. All thoughts passing through my head in a single second. And the second hole in my theory. Ultimately, it was just a signal that his schedule was light and he wasn’t with another patient delivering devastating news.

My tumor has NOT come back. No changes from my last MRI 12 weeks ago. So much for that crazy idea, which just goes to show that crazy ideas can sometimes just be crazy.

I aced the trial questionnaire and resisted my urge to mess with the new clinical coordinator by asking the questions and answering them before she could begin. Next time…next time…

I always forget about how exhausting MRI day is – even when its good news. The anxiety you’ve carried around all week is HEAVY. You’re powering through and then it’s done and you realize just how heavy it is and that you need a long, long nap immediately.

There is some bad news, however, but I don’t want you to panic. Its pretty serious and I may need some time to get through this transition. It seems to be then end of clementine/mandarin season. I know…I know…it’s ok to cry. They’ll be back next year. Until then, we’ll have to move on to cherries, plums and peaches.  We’ll miss you tiny oranges.

 

 

 

 

 

My Mom Is Love

I am so lucky to have a mom like my Mom. My children are incredibly lucky to have a Nana like their Nana. My husband is thankful and lucky to have a mother-in-law like his mother-in-law.

I have so many memories of my Mom, but on this Mother’s Day, I’ll share a some of my favorites. I’ll leave out the ones that would embarrass my brother. (You’re welcome Jon.)

1. My mom was always trying new things. Candle making, brining freshly picked olives, macrame, cooking school, spending a summer cooking in a Scottish castle, starting a cookie business. Some of them stuck and some didn’t, but she was always game to venture out to try new things.

2. She lugged me around to the various activities that I wanted to explore when I was young – swim lessons, tennis, ballet, gymnastics, piano lessons, more dance lessons. She supported my enthusiasm for each activity and didn’t get mad (at least not in front of me) when I decided to move on to another. In my defense, having a ballet teacher tell you that she knows your posture is correct because you’ll be able to hold a pencil between your butt cheeks can turn you off ballet in an instant and she agreed it was odd enough to quit.

3. My mom knew EVERYTHING. She had a sixth sense about where I was, what I was doing, and had no qualms about magically finding a phone number of some stranger’s house (where I wasn’t supposed to be) and calling to say she was on her way to pick me up. My mom had a way of scaring the crap out of me by letting me know NOTHING was going to slip by her. Somehow that made me feel loved and safe – even if I didn’t admit it at the time. I can only hope that I can scare the crap out of my own daughter.

4. She encouraged me to continue doing things I loved doing, even when some b#%#h of a teacher told me I was a terrible writer and would never, ever be a good writer (or something equally horrible to crush a kid’s soul and dreams.) It took me awhile to get over that serious blow to my confidence, but my mom never gave up encouraging me and telling me that she had confidence in my skills. And look at me now Mrs. Merrill! Ppssshht (or however you spell a raspberry sound)!!

5. My mom survived my teenage years when I was nearly impossible to live with. She let me know that no matter how horrible I could be, she was still going to love me (even if it was REALLY hard.) The drama and angst of my teenage years were probably awful and I’m sure my daughter will put me through the same sort of torture. Even through that torture, she did continue to love me.

6. My mom has always been there when I’ve needed her – driving 6-7 hours to be there for happy and devastating moments. She was there to take care of me when I had nasal surgery to correct my deviated septum – recognizing the signs of a bad reaction to Valium when I pointed out there were tiny men dancing on my nose and then listening to me swear loudly as they pulled 6 ft of gauze out of each nostril.  She was there when I had my tonsillectomy – learning along with me that foods you’d NEVER think were acidic are acidic and agreeing that baby food was nasty. She was there when my daughter was born – immediately loving her unconditionally as she does all of her grandchildren. She was there when I lost my second daughter and quite possibly saved her twin brother in the process, experiencing devastation and tentative relief in rapid cycles. She arrived in the nick of time before my son was born and went out to buy preemie clothes when he was 2 pounds smaller than expected. She was there when I was diagnosed with brain cancer, taking care of my children, my husband and me as I recovered from surgery, went through weeks of daily trips to Stanford for radiation treatments, and suffered through chemo. All of this happening during a kitchen remodel – proving her status as a saint.

7. When I became vegan and married a vegan and then we decided to raise our children vegan, she made every effort to learn how to cook vegan meals for us. She doesn’t have to, but she does. She willingly cooks 2 meals when we visit, even during holidays. While I help cook some of those meals, she happily makes us feel comfortable, accommodating and respecting our dietary choices.

There are so many memories of my mom, I couldn’t possibly name them all here. She is amazing and I have learned so much from her about how to be a good mother to my own children. Thank you Mom for all of the sacrifices, love, and support you’ve given me through good times and bad. I couldn’t have had a better mother to lead the way in life.

Happy Mother’s Day today and every day.

mommebaby mommeteen

momlucia   momciame

Alone Time

I know that some people get energized from being social and having a full schedule of interesting (and sometimes mundane) things to do. My husband is often in this category. He gets home from a long day at work and wants to visit with neighbors, play with the kids, go to shows or events. He is an exuberant and enthusiastic extrovert.

I however, am an introvert (opposites attract?) and have a brain injury. Introverts re-energize by getting lost in their own thoughts, having quiet time, reading a book, mostly things that don’t require talking to someone else. This means that the alone time I need to re-energize is no longer optional, it’s mandatory. I get overstimulated with a full schedule and socializing, even with the people I love most. This overstimulation means that I shut down – I can’t hear conversations, I can’t focus, I get exhausted, and I have to say, ‘it’s time to go’ with little warning. This is exacerbated if I didn’t sleep well the night before – tiredness leads to tiredness or something like that.

Luckily, the people who know me and have been there through the last 18 months know that what I’ve described here is immensely better than it was in the early months. Then, I had to wear earplugs everywhere, visits were limited to very short periods of time, I excused myself from the room without warning, loud noise (including music, and my definition of loud was just above a whisper) was intolerable and it wasn’t unusual for me to nap twice a day. My family quickly learned the signs that I was being overstimulated and gracefully, generously helped me enter my cocoon of solitude.

For people who don’t know me or my ‘situation’, I can only imagine what they’re thinking. I don’t look like I’m sick, so when I find it difficult to have a normal conversation, I’m aloof or a bitch. When I get to the end of my tolerance for noise and stimulation and I look at my husband, giving the signal that it’s time for a speedy departure, I’m ungrateful or a bitch. When I no longer attend concerts or events with my husband, because my low tolerance would completely ruin his experience – we’re clearly drifting apart or I’m a bitch. When I need to excuse myself from the room abruptly to get a moment of quiet so I can go on, I’m just a bitch.

I have good days and bad, just like anyone else. My bad days will find me entering into my Hobbit hole for a nice long nap. I don’t want to talk to anyone. I de-prioritize everything on my to-do list. I read a book. I have another nap.

My good days – when I’ve gotten enough sleep the night before, I can spend an entire day taking kids to San Francisco. I can clean the house from top to somewhere in the middle. I can garden with focused intent on ‘growing things we can eat, dammit’. I can run errands at a super hero pace. I am overjoyed at being able to speak without hesitation, finding every word needed. I make valiant attempts to fix our dryer that won’t start. I cross things off my list at a steady pace and feel no need to add ‘shower’, ‘eat’, ‘get dressed’ to the list, just so I can cross them off. Good days rule! And then I go take a nap and have some alone time.

Post brain cancer diagnosis/treatment, I’ve had to relearn and adjust my understanding of my limitations. I understand that my body and brain can only handle so much. I sometimes feel guilt for needing to retreat into solitude, but I understand that it’s needed. I have a brain injury and a seizure disorder and the overstimulation is exhausting. I want to do it all, but I know I can’t. I want to fill each and every day with seeing friends, volunteering, writing, playing non-stop with my kids, or escaping into nature. But I can’t do it all. Perhaps its cliché, but I have to take care of myself so I can take care of others. I have to take care of myself so that I can continue the fight energetically.

I see people who are so busy that they’re taking or making calls while completing their everyday activities – dropping kids off at school, walking the dog, grocery shopping and my least favorite – while they’re on the toilet. But EVERYONE needs alone/quiet time to just breathe, appreciate what you have, smell the flowers in bloom, feel the warmth of the sun, do something for yourself. Even my very social husband needs his alone time – playing drums, exercising, or walking the dog. Maybe the amount he needs is smaller, but he still gets re-energized by doing something for himself.

I write this post more as an acknowledgement of my needs, giving myself permission to escape into solitude without guilt.

But take time for yourself every once in a while to appreciate all of the amazing things you do, enjoy something you love, and nurture your soul before you go back to the daily grind.

 

My Absence Explained

Some people have been asking why I’ve not written any posts recently, so I thought I’d give you a quick picture into my recent activities. It’s not particularly exciting I’m afraid. I was being a mom, with just a smattering of Brain Cancer.

I went on a field trip with my son’s class to a very cool place at the University of California Santa Cruz. It’s called the Life Lab and they learned about leaves, held chickens and warm eggs, and explored to find different kind of roots. It was pretty awesome and they had a great time. Because it was a pre-defined agenda for first graders, it was a little frustrating for me because I was finding things off of that agenda and I couldn’t use my discoveries as teachable moments. I found bugs, cool remains of some plant – you know, like when it’s just a skeleton left behind, an incredible view of the ocean, a bird’s nest and a few other things. I couldn’t interrupt the UCSC student’s planned schedule of discovery. So many missed moments – but maybe that’s just the previous educator in me.  I’ll have to take my kids back some day and explore more freely.

Other than that we’ve gone swimming, cleaned rooms, sorted Lego collections, walked the dog, supervised and supported a science project, hung out with friends and our awesome neighbors, volunteered in the school library, planned part of a summer trip, and other lovely, daily life activities. I’ve had a great time playing with the younger siblings of the girls in our school’s Girls on the Run team during practice. I attempted to fix a broken dryer – unsuccessfully – making us Wilders without clean underpants. I fixed a broken car – though to be honest, it wasn’t very hard – I pushed the connector to the negative thingie on the battery back down after it popped up. I went to a fundraising event for the Valley Medical Center Foundation where my brother-in-law is the Executive Director. He knows EVERYONE – it’s amazing to see him work a room and explain the value of the VMC to our community. My husband was a ‘celebrity bartender’ at the event. It was a great success and if you like wine, you should go to Facebook and like his page Wilder on Wine. He’s funny, knowledgable, likes affordable wines, and is incredibly handsome. And yes, this is a shameless promotion.

On the Brain Cancer front, I’ve had another round of vaccine shots. I was invited to be a part of 2 panels for Clinical Trial Awareness Week at Stanford. It’s interesting to see how different each trial is in terms of what’s being targeted, how is the drug supposed to work, how it’s administered, etc. For example, one panelist talked about spending 12 hours receiving infusions (with some breaks). Some people have to drive great distances to get their treatments. It takes me 20 minutes to get to Stanford and I spend about an hour and a half at the Center for Translational Medicine and then I’m on my way home to dig an ice pack out of the freezer. Again, I’ve been pretty lucky.

So now you know. I’m healthy, busy, and enjoying my between days. Now I’m off to start digging in the garden.

Routine Disruption

Everyone gets into routines – processes that you do often enough that you don’t think about it when you’re going through the motions. Imagine your morning routine – shower (shampoo, soap, rinse, dry), deodorant, brush hair, etc…  You probably go through that routine without much thought. Occasionally, you forget to check if your shoes match or to pack your underwear to wear after a morning post-work out shower.

If you have children, getting ready for school is probably another routine. Such a routine is only modified by a sleepy, grumpy child who is unsatisfied with their clothing or breakfast options.

One of my routines involves taking medication twice a day to ensure I don’t have seizures. My alarms – mine, my husband’s, and my daughter’s verbal reminders – go off at regular times in the morning and night so that I don’t forget to take these essential medicines. If I have a seizure, I can’t drive for at least 3 months, I end up in the hospital, and if my seizure is not brought under control I could get (further) brain injury or worst case, die.

99% of the time, this routine goes off as planned. IF there’s a lot going on at the designated times (usually non-routine activities), even with all of the alarms, I can forget. My alarm goes off and I get up to take my meds and I get distracted between the family room and the kitchen (where my drugs are stored). I’ll stop to do any variety of things on that short journey from one room to the next and then carry on with another variety of things – sometimes ironically trying to remember . Forgetting the one critical thing I got up to do. My short-term memory issues create some risk with my high level of distractibility. 99% of the time, there’s someone around to remind me. Every once in a while that’s not the case, and I have to ask someone with a better short-term memory to recall whether they saw me swallow my pills.

Occasionally I have to leave the house before the morning drug ingesting hour and alarms. This is where the routine of the drugs takes over. I carefully dispense my handful of drugs to take with me. Then I grab my bottle of water and swallow them…early. The downside of a regular routine. While I still manage to get my drugs morning and night, they’re sometimes a little off in timing. The important thing is that they’re working and I feel pretty great.

But it continues to be a learning process. While the alarm system works very well, sometimes a fail safe is a good idea. This is where pill containers come in handy. I never thought that at 45 years old I’d be looking for the perfect pill container to organize my daily drug regiment. I’m looking for a pill container with a full week of am and pm compartments. There are so many choices, I’ll probably get distracted and walk to another aisle to find some shampoo.

And so the battle to live life with brain cancer continues.