Thoughts on potential employment

As a follow up to my Existential Conflict self-pity extravaganza, I was giving some thought to any and all job prospects.

Jobs that would be completely out of the question:
Driver – Truck, Taxi, School Bus, Delivery….you get the idea. While I’m completely capable of driving and have been approved by the respectable government organization which makes such decisions, I’m doubtful that any business would hire me to drive.

Strobe light tester – flashy lights and seizures have a long history of incompatibility

Surgeon – I’m not skilled for this role in any way, shape, or form

Mathematishian – I can’t even spell it right…clearly I’m not qualified for complex number problem solving. Also, I like words WAY more than numbers. Which is ironic since I spelled mathmatishian wrong…again.

Rave DJ – 1. Loud, repetitive techno music 2. Afore mentioned strobe lights 3. My aversion to rooms full of young adults under the influence of mind-altering drugs with various forms of glow sticks and pacifiers.

My non-negotiable requirements for any job I might consider:
Nap time – Liberal policies on crawling into a comfy corner or business-provided cot to have a little shut eye when my body tells me its time to take a little break with my eyes closed

Flexible schedule – Not a boiler plate policy allowing me to work at home (though that would also be required as well), but a level of flexibility that would allow me to pick up my kids after school, take days off when the kids are off of school (including summers), attend my regular doctor appointments, and unlimited random days where the Nap Time clause is insufficient for my needs. My hours will need to be strictly limited to 9am to 12pm only.

Fragrance free workspace – Perfume and ‘fragrances for men’ are offensive to the nose, as are artificial smells like cinnamon candles, air fresheners, or unreasonably scented hair and beauty products. All fragrances must be pleasing and approved by ME.

Vegan, protein rich snacks – Blood sugar balancing nutrition, vegan and delicious, must be readily available to prevent states of hangriness. No one wants to see me when I’m hangry, it’s not pretty.

Dog friendly workplace – My dog has separation anxiety and needs to be with his people or he cries. No one wants to be responsible for making my dog cry.

After giving it more thought, maybe I don’t really want a traditional job. I realize that not HAVING to work is a luxury and I am very grateful for that. Being a stay-at-home parent is something that not everyone can (or wants to) do. It can be hard, but rewarding work. I have the opportunity to volunteer in the school library, accompany my son’s class on field trips, and go grocery shopping in relative solitude.

While occasional feelings of guilt and insecurity for not being a rare Super Survivor may pass through my mind, I realize that my life is pretty awesome (aside from the cancer part). Self pity posts are hereby over. We shall now return to our regular programming.

Childhood Anxiety

My son’s reading light has developed a ‘twitch’. It behaves like a strobe light when you first turn it on. Eventually, after some effort, it behaves like a reading light should. While in strobe light mode, I cover it up with my hand – sensitivity to the flickering on my part. Last night, he asked me to not cover it up because he liked it when it flickered (this is the kid who wanted to put the Instant Party Machine on his Christmas list when we got yet another catalog in the mail.) I explained that the light hurt my eyes when it flickered and I wouldn’t remove my hand. He asked why so I explained that for some people, that strobe light activity is hard on their brains and can sometimes trigger a seizure and I wasn’t taking any chances. Keep in mind, my kids have seen 2 of my seizures and have to walk home from school because of them. After we finished our book and were snuggling before he fell asleep, he asked if he was going to have a seizure. I explained that he wouldn’t likely have seizures in his lifetime. I went into a little more detail about why I do and what we’re doing to avoid another. He was confused why I had a seizure BEFORE I had brain surgery – but finally understood after I explained a little more detail. He had an ‘OH, now I understand’ moment and went to sleep peacefully.

As an aside – my desire to put the 7 person tricycle from that same catalog on MY Christmas list was nixed. I thought this was unfair and tried to make the argument that surely we could find 7 people to ride it with us. No luck. Clearly it was a matter of where to store it rather than the $20,000 price tag.

Back to the anxiety… This morning, I woke up and had no voice (thank you lingering cold.) I woke my children up with whispers. My daughter was unfazed. My son, remembering the expressive aphasia preceding the grand mal phase of my seizures, was not quite as unfazed.  He asked if I was ok at least 4 times. I explained in a whisper that I was fine and had just lost my voice, but it would likely come back later in the day. Unconvinced, he kept a close eye on me while we went through our morning routine. Once he saw that the routine hadn’t changed and I still had enough awareness of the time – 5 minutes to get glasses and shoes on, so move it! – he finally relaxed.

While most of the time, our kids handle the new me and all that comes with it calmly and bravely, every once in a while the anxiety comes through. It’s a reminder to us that we need to check in from time to time and remind them that all is ok and they can always ask questions if they’re worried about something…anything. I don’t think this is necessarily unique to our family, so remember to tell your children you love them and look for the signs that maybe, just maybe they need to talk about their worries.

Wishes For My Daughter

My daughter turned 10 years old this week. It feels like a big milestone, she’s more independent, more mature, more attitude-prone.

I’d really like to be around for the next decade, or two, or three of her life to see her reach those milestones every child (because they’re always YOUR child) reaches on their journey in the world. I’d like to be there for the moments that she smiles bigger than ever, her heart bursting with joy.  I’d like to be there for the moments when she needs a mother more than anything – to tell me her fears, secrets, dreams, and wishes – just to hold her hand or hug her or encourage her to carry on because ‘this too, shall pass.’ I’d trade anything to just be there. With any luck, I will be.

She’ll make new friends and lose old friends, discovering what true friendship means and how valuable friends are in life. She’ll have first crushes, first boyfriends and have her heart soar and then broken. She’ll love unabashedly and find someone to love her unabashedly back. She’ll have adventures and mis-adventures. She’ll make mistakes and learn from most of them. She’ll read a million books and get lost in every one, going back to her favorites when she needs an escape. She’ll create – words, art, music – whatever inspires her soul. She’ll care for others and hopefully let others care for her. She’ll discover who she is as a person in this world, hopefully always being true to herself and celebrating her uniqueness.

Sometimes we disagree. Sometimes she drives me to tears. Sometimes she reminds me too much of myself. Sometimes I feel like a competent parent and other times a total failure. But she’s beautiful and strong-willed and I love her so much my heart will burst. No one said it was easy – parenting is hard and messy and a series of trial and error, but it’s the greatest job in the world.

I wish that I could easily find the words to teach her the lessons I hope she’ll learn along the way to becoming the strong, confident, compassionate, and loving woman I know she’ll be. I feel a little fraudulent sharing ‘words of wisdom’ using the words of others, but sometimes others find the right words for the wishes and thoughts that are hiding in my heart. One day soon (a dangerous promise in the world of GBM), I’ll start that journal I bought for her and use my own words – hopefully I’ll have enough courage to find them.

There are so many lessons to teach a daughter in a lifetime, but here are some that come to mind as she enters her second decade:

You will always be beautiful, inside and out – believe that you are and know that beauty comes from within

Live in a way that if anyone speaks badly of you, no one would believe it

Treat everyone with kindness and respect, even those who are rude to you – not because they are nice, but because you are

Don’t change so people will like you, be yourself and right people will love the real you

Creativity takes courage – never stop being courageous

Expect nothing and appreciate everything

Nobody’s perfect, accept others for who they are, the imperfections make them more interesting

Think too much and you’ll create a problem that wasn’t even there in the first place

Close your eyes, clear your heart, and let it go

If ever there is tomorrow when we’re not together…there is something you must always remember. You are braver than you believe, stronger than you seem and smarter than you think, but the most important thing is even if we’re apart…I’ll always be with you.



What Do We Tell The Kids?

We have young kids – 6 and 9 (5 and 9 at the time of seizure, surgery, diagnosis, etc), so once we knew it was cancer and potentially bad, we debated long and hard about how much to tell the kids. There’s a fairly big gap in maturity between 5 and 9, so we had to think about what each child would be ready to hear and capable of understanding. Our kids are also very sensitive and worry – which seems a strange thing to say, but it’s true. Our son will leave the room if the music in a show (we’re talking PBS Kids or Disney here) changes and indicates suspense or emotion. He thinks Good Luck Charlie is scary. If you’ve never seen it, it’s not scary in the slightest. Our daughter has gotten less sensitive to peril in media as she’s gotten older, but she’s definitely a worrier. She’s a mini-me.

So, we were honest but limited on the details. They knew I had a tumor and was having brain surgery. They knew I was going to have to do treatment and we explained as best we could what chemo and radiation were. They witnessed my first seizure, so they received a brief lesson in seizures and what happens in the brain. Our neighbor found her children’s book on brains for them to look through. We explained as best as we could in terms they’d understand without over-sharing so that fear and worry prevent them being kids. We didn’t use the word ‘cancer’ outright because….well, what do YOU think of when you hear the word ‘cancer’? THAT’s why.

If you were in my situation, what would you tell your kids?  I don’t know when the tumor will come back, maybe it won’t.  If it comes back, maybe we can remove it or treat it.  Maybe it won’t create new, worse symptoms or long term side effects, but maybe it will.  Maybe I’ll be just another statistic in the world of a GBM4 patient, but maybe I’ll be legendary in my survival. But I’m not dying yet.  So, what would you tell your 5 and 9 year old? Would you tell them that this cancer is aggressive and commonly terminal, but we just don’t know when? Would you give them information that makes them so anxious that they start doing poorly in school, act out in fear and confusion, or spend their nights waking up from terrible dreams?

But on the other hand, you want to be honest and open. You want them to be informed – to hear it from you rather than someone else. You want them to be prepared.

We bought books and read them. We made sure the kids knew they could ask any question they wanted and we would do our best to answer. We answer the questions asked and don’t add to it a bunch of additional information they may not be ready to hear. That said, we sometimes sense there’s more anxiety about something and have to dig a little to get the 9 year old to talk. We have to respond carefully when the 5 year old says, ‘Mommy, you’re not going to die for a long, long time.’ We have to watch how much we talk about things around them. We don’t want to keep things secret, but when your daughter says she’s worried because she forgot where she put something she’d had in her hands moments before, you realize you’ve probably been talking a little too much about your memory issues. We don’t want to overprotect, but we don’t want to cause unnecessary anxiety either. So, we haven’t talked about death with them. We hope we won’t have to, we hope every day for legendary.

For me, I want to prepare my kids for the day I do go. I want to know that they can cook, do some laundry, do some cleaning. I want to know that they’ll be open about how they feel – even if it’s hard to share the hurt – with their Dad and friends. I want to know that they’ll look after each other and their Dad. I want to know that they’ll ask neighbors and friends for help if they need it. I want to know that they’ll be loved, cared for, and nurtured; allowed to experience life and make mistakes knowing someone will be there to catch them as they grow into the amazing adults I know they’ll be.

I know that’s not so different from what any other parent wants for their children. But I have to think about that future today. I have to balance the realism with the optimism to make sure we’re ready, just in case.